# data[].attributes.headline
Neurodiversity in business (Research report, 2024)  

# data[].attributes.subject
Neurodiversity in business (Research report, 2024)  

# data[].attributes.attachment_link.title
NiB and University of Birkbeck, Research Report 2024 - Neurodiversity in Business

# data[].attributes.attachment_link.description
For the second consecutive year, we are proud to partner with Birkbeck, University of London, on the Neurodiversity in Business and Work 2024 report.

# data[].attributes.headline
Neurodiversity in the Workplace (Fujitsu & Autistica Dare).   

# data[].attributes.subject
Neurodiversity in the Workplace (Fujitsu & Autistica Dare).   

# data[].attributes.headline
Perspectives on employment for Autistic people (CRAE webinar, 2022) 

# data[].attributes.subject
Perspectives on employment for Autistic people (CRAE webinar, 2022) 

# data[].attributes.attachment_link.title
Perspectives on Employment for Autistic People - panel discussion 20/7/2022

# data[].attributes.headline
Opening Doors to Employment. Neurodiverse Voices, 2018.  

# data[].attributes.subject
Opening Doors to Employment. Neurodiverse Voices, 2018.  

# data[].attributes.headline
Matt Boyd, founder of Exceptional Individuals, discusses the untapped potential of neurodiversity in the workplace on the BBC One Show. 

# data[].attributes.subject
Matt Boyd, founder of Exceptional Individuals, discusses the untapped potential of neurodiversity in the workplace on the BBC One Show. 

# data[].attributes.attachment_link.title
Neurodiversity & Employment on BBC One (Matt Boyd, Exceptional Individuals)

# data[].attributes.headline
CIPD press release on harassment and discrimination experienced by neurodivergent employees

# data[].attributes.subject
CIPD press release on harassment and discrimination experienced by neurodivergent employees

# data[].attributes.attachment_link.title
CIPD | One in five neurodivergent employees have experienced harassment or discrimination at work because of their neurodivergence

# data[].attributes.attachment_link.description
Research from CIPD / Uptimize shows only half of neurodivergent employees feel their organisation has an open and supportive climate, where people can talk about neurodiversity

# data[].attributes.headline
Neuroinclusion at Work Report (CIPD, 2024)

# data[].attributes.subject
Neuroinclusion at Work Report (CIPD, 2024)

# data[].attributes.headline
'Barriers and Facilitators to Creativity for Neurodivergent and Neurotypical Individuals within Creative Workplaces' (Poster by Carolyn White et al., 2021)

# data[].attributes.subject
'Barriers and Facilitators to Creativity for Neurodivergent and Neurotypical Individuals within Creative Workplaces' (Poster by Carolyn White et al., 2021)

# data[].attributes.headline
Relational incongruence in neurodiverse workgroups: Practices for cultivating autistic employee authenticity and belonging (Natalie H Longmire et al., 2024)

# data[].attributes.subject
Relational incongruence in neurodiverse workgroups: Practices for cultivating autistic employee authenticity and belonging (Natalie H Longmire et al., 2024)

# data[].attributes.body
for cultivating autistic employee authenticity and belongin

# data[].attributes.headline
Designing for Strengths: Opportunities to Support Neurodiversity in the Workplace (Kaely Hall et al., 2024)

# data[].attributes.subject
Designing for Strengths: Opportunities to Support Neurodiversity in the Workplace (Kaely Hall et al., 2024)

# data[].attributes.headline
What is Autistic Burnout? A thematic Analysis of Posts on Two Online Platforms. (Jane Mantzalas et al., 2022)

# data[].attributes.subject
What is Autistic Burnout? A thematic Analysis of Posts on Two Online Platforms. (Jane Mantzalas et al., 2022)

# data[].attributes.attachment_link.title
What Is Autistic Burnout? A Thematic Analysis of Posts on Two Online Platforms

# data[].attributes.attachment_link.description
Compared with adults in the general population, autistic adults are more likely to experience poor mental health, which can contribute to increased suicidality. While the autistic community has long identified autistic burnout as a significant mental…

# data[].attributes.headline
“I’ve Absolutely Reached Rock Bottom and Have No Energy”: The Lived Experience of Unemployed and Underemployed Autistic Adults. (Laura J Smethurst et al., 2024)

# data[].attributes.subject
“I’ve Absolutely Reached Rock Bottom and Have No Energy”: The Lived Experience of Unemployed and Underemployed Autistic Adults. (Laura J Smethurst et al., 2024)

# data[].attributes.headline
Improving the workplace support for neurodivergent women managing their menstrual health: Neurodiversity and menstrual health at work. (K Sang et al.)

# data[].attributes.subject
Improving the workplace support for neurodivergent women managing their menstrual health: Neurodiversity and menstrual health at work. (K Sang et al.)

# data[].attributes.body
managing their menstrual health

# data[].attributes.attachment_link.title
Improving the workplace support for neurodivergent women managing their menstrual health: Neurodiversity and menstrual health at work

# data[].attributes.headline
Relational incongruence in neurodiverse workgroups: Practices for cultivating autistic employee authenticity and belonging. (Natalie H Longmire & Timothy J Vogus).  

# data[].attributes.subject
Relational incongruence in neurodiverse workgroups: Practices for cultivating autistic employee authenticity and belonging. (Natalie H Longmire & Timothy J Vogus).  

# data[].attributes.headline
Toward an understanding of occupational burnout among employees with autism – the Job Demands-Resources theory perspective. (Michal T Tomczak and Konrad Kulikowski).

# data[].attributes.subject
Toward an understanding of occupational burnout among employees with autism – the Job Demands-Resources theory perspective. (Michal T Tomczak and Konrad Kulikowski).

# data[].attributes.attachment_link.title
Toward an understanding of occupational burnout among employees with autism – the Job Demands-Resources theory perspective - Current Psychology

# data[].attributes.attachment_link.description
This article aims to gain insight into the phenomenon of occupational burnout among employees with autism based on the theoretical framework of the Job Demands-Resources theory and the literature on employees with autism in the workplace. Firstly, we argue that although the resources and demands of the neurotypical and neurodivergent employees might be different, the theoretical mechanism of occupational burnout formation remains similar among the neurotypical and neurodivergent employees, leading to the similar burnout experience. Next, we distinguish key demands that might drain neurodiverse employees’ energy, and spark burnout, and propose a set of resources that might foster their achievement of work goals and mitigate demanding working conditions. We emphasise that the nature of job demands/resources that may cause burnout is not universal but might depend on how employees evaluate them, thus neurotypical and neurodiverse workers who evaluate the same work characteristics differently might complement each other, increasing organisational diversity without losing productivity. Our conceptual elaboration contributes to the theory and practice of healthier workplaces by providing tools and inspiration to managers, policymakers, and all stakeholders interested in creating a diverse and productive workplace. Moreover, our work might spark a much needed debate on occupational burnout among employees with autism and encourage conducting further empirical studies.

# data[].attributes.headline
Leading with understanding: cultivating positive relationships between neurotypical leaders and neurodivergent employees. (Joanna Maria Szulc)

# data[].attributes.subject
Leading with understanding: cultivating positive relationships between neurotypical leaders and neurodivergent employees. (Joanna Maria Szulc)

# data[].attributes.attachment_link.title
Leading with understanding: cultivating positive relationships between neurotypical leaders and neurodivergent employees | Emerald Insight

# data[].attributes.attachment_link.description
Leading with understanding: cultivating positive relationships between neurotypical leaders and neurodivergent employees - Author: Joanna Maria Szulc

# data[].attributes.headline
Factors shaping the employment outcomes of neurodivergent and neurotypical people: Exploring the role of flexible and homeworking practices. (Layla J Branicki et al.)

# data[].attributes.subject
Factors shaping the employment outcomes of neurodivergent and neurotypical people: Exploring the role of flexible and homeworking practices. (Layla J Branicki et al.)

# data[].attributes.headline
Autism and neurodiversity in the workplace: A scoping review of key trends, employer roles, interventions and supports. (Benjamin Wen et al.)

# data[].attributes.subject
Autism and neurodiversity in the workplace: A scoping review of key trends, employer roles, interventions and supports. (Benjamin Wen et al.)

# data[].attributes.headline
Physical workplace adjustments to support neurodivergent workers: A systematic review (Clara Weber et al., 2022).

# data[].attributes.subject
Physical workplace adjustments to support neurodivergent workers: A systematic review (Clara Weber et al., 2022).

# data[].attributes.headline
‘‘Having All of Your Internal Resources Exhausted Beyond Measure and Being Left with No Clean-Up Crew’’ : Defining Autistic Burnout. (Dora Raymaker et al., 2020). 

# data[].attributes.subject
‘‘Having All of Your Internal Resources Exhausted Beyond Measure and Being Left with No Clean-Up Crew’’ : Defining Autistic Burnout. (Dora Raymaker et al., 2020). 

# data[].attributes.attachment_link.readable_text
Publishing with Mary Ann Liebert, Inc. delivers end-to-end benefits from the time of submission through to publication and beyond.

We welcome the opportunity to work with you and your institution. Find everything you need to get the most out of Liebert journals in your library and to keep your collection up-to-date.

Liebert Open Access incorporates our open access journals, as well as open access articles published in our subscription journals. All content published by Liebert Open Access is freely available online for everyone to discover, read, and share.

Take your brand to the next level with custom publishing programs from Mary Ann Liebert, Inc., publishers.

# data[].attributes.attachment_link.description
Publishing with Mary Ann Liebert, Inc. delivers end-to-end benefits from the time of submission through to publication and beyond. We welcome the opportunity to work with you and your institution. Find everything you need to get the most out of Liebert journals in your library and to keep your collection up-to-date.

# data[].attributes.headline
Autistic Perspectives on Employment: A Scoping Review (2024)

# data[].attributes.subject
Autistic Perspectives on Employment: A Scoping Review (2024)

# data[].attributes.attachment_link.readable_text
Abstract

Purpose

Inclusive recruitment and employment of autistic adults has garnered recent attention in research and policy. To address a need to better understand the experiences of autistic adults in relation to paid employment, we asked the literature, what are the experiences of autistic individuals (from their perspectives) in competitive employment?

Methods

A scoping review was conducted to summarize and consolidate the findings across research to date. A systematic search and screen of the literature resulted in 32 relevant studies.

Findings

Key study characteristics, participant demographics, and thematic findings are shared, along with considerations and recommendations for future research and practice. Six key themes were described by autistic participants across the 32 studies: (1) accessibility of employment, (2) workplace relationships and communication, (3) role alignment, (4) sensory needs and/or mental health, (5) colleagues' knowledge and beliefs about autism, and (6) family and community context.

Conclusion

It is anticipated that the results of this review will be beneficial for stakeholders engaging in discussions and decision-making across research and employment contexts.

Access this article

Price excludes VAT (USA)
Tax calculation will be finalised during checkout.

Instant access to the full article PDF.

References

1. López B, Keenan L. Barriers to employment in autism: future challenges to implementing the Adult Autism Strategy. Autism Research Network; 2021. p. 1-7. http://www.autismrpphub.org/sites/default/files/articles/employment_report.pdf. Accessed 11 June 2021.

2. Peters MD, Godfrey CM, McInerney P, Soares CB, Khalil H, Parker D. The Joanna Briggs Institute reviewers' manual 2015: methodology for JBI scoping reviews; 2015. http://joannabriggs.org/assets/docs/sumari/Reviewers-Manual_Methodology-for-JBI-Scoping-Reviews_2015_v2.pdf.

3. Pozner A, Hammond J. An evaluation of supported employment initiatives for disabled people. Equal Divers Inclusion. 1994;13(6-7):45.

Google Scholar

4. QSR International. NVivo qualitative data analysis software (Release 1.0); 2020.

5. Conte DA. The lived experiences of adults with Autism Spectrum Disorder in the workplace: a descriptive phenomenological study (Publication No. 28315895). Doctoral Dissertation, Northcentral University; 2021. ProQuest Dissertations Publishing.

6. Ortiz CS. Engaging untapped talent: supporting autistic employees in meaningful employment. (Publication No. 10973021). Doctoral Dissertation, Regent University; 2018. ProQuest Dissertations Publishing.

7. Berman, A. Making Work Work: improving employment outcomes for Autistic adults. (Publication No. 28965408). Doctoral dissertation, The George Washington University; 2022. ProQuest Dissertations Publishing.

8. Lorenz T, Frischling C, Cuadros R, Heinitz K. Autism and overcoming job barriers: comparing job-related barriers and possible solutions in and outside of autism-specific employment. PLoS ONE. 2016;11(1): e0146040.

Article Google Scholar

9. Scott M, Falkmer M, Girdler S, Falkmer T. Viewpoints on factors for successful employment for adults with autism spectrum disorder. PLoS ONE. 2015;10(10): e0139281.

10. Thompson WF. Employee perspectives: technology as an accommodation for employees with autism spectrum disorder (Publication No. 13409706). Doctoral Dissertation, New Jersey University; 2018. ProQuest Dissertations Publishing.

11. Lizotte MC. A phenomenological study of vocational experiences in adult college graduates with autism spectrum disorders. (Publication No. 10140157). Doctoral Dissertation, Michigan State University; 2016. ProQuest Dissertations Publishing.

12. Megrew LE. Neurodiversity and the organizational interview process: a phenomenological study of adult high-functioning Autists (Publication No. 27541600). Doctoral dissertation, Grand Canyon University; 2019. Proquest Dissertations Publishing.

13. Müller E, Schuler A, Burton BA, Yates GB. Meeting the vocational support needs of individuals with Asperger syndrome and other autism spectrum disabilities. J Vocat Rehabil. 2003;18(3):163-175.

Google Scholar

14. Rebholz CH. Life in the uncanny valley: Workplace issues for knowledge workers on the autism spectrum. (Publication No. 3680488). Doctoral Dissertation, Anitoch University Seattle; 2012. ProQuest Dissertations Publishing.

15. Austin RD, Pisano GP. Neurodiversity as a competitive advantage. Harv Bus Rev. 2017;95(3):96-103.

Google Scholar

16. Nicolaidis C, Raymaker DM, Ashkenazy E, McDonald KE, Dern S, Baggs AE, Kapp SK, Weiner M, Boisclair WC. "Respect the way I need to communicate with you": healthcare experiences of adults on the autism spectrum. Autism. 2015;19(7):824-831.

17. Marenus MW, Marzec M, Chen W. A scoping review of workplace culture of health measures. Am J Health Promot. 2023;26:08901171231179160.

Google Scholar

18. Martin S. Industrial organization in context. Oxford: Oxford University Press; 2010.

Google Scholar

19. Colella A, Bruyère SM. Implications and needed next steps. Neurodiversity in the workplace. London: Routledge; 2022. p. 316-328.

20. Singer J. Odd people in: the birth of community amongst people on the autistic spectrum: a personal exploration of a new social movement based on neurological diversity. Masters thesis. Sydney: University of Technology; 1998.

21. Austin RD. Hart Schaffner Marx: neurodiversity employment at a classic American suit maker. Ivey Business School Case 9B14C048; 2018.

Download references

Funding

The lead author on this project is a Canada Graduate Scholarship Award Holders (Grant Number: 767-2022-1558). While funding is not specifically allocated to this project from these scholarships, authors are obliged to share this funding source.

Author information

Authors and Affiliations

1. Faculty of Social Work, Wilfrid Laurier University, Waterloo, ON, Canada

Sarah Southey

2. The Redpath Centre, Toronto, Canada

Sarah Southey

3. School of Social Work, University of British Columbia, Vancouver, Canada

Rae Morris

4. Rae Morris Counselling Group, Vancouver, BC, Canada

Rae Morris

5. Faculty of Social Work, University of Calgary, Calgary, Canada

David Nicholas

6. Sudbury, Canada

Megan Pilatzke

Contributions

SS and RM wrote the main manuscript, figures and tables. DN and MP reviewed manuscript and made editing suggestions.

Corresponding author

Correspondence to Sarah Southey.

Ethics declarations

Competing interests

The authors have no relevant financial or non-financial interests to disclose.

Ethical Approval

This submission is a scoping review and in accordance with Wilfrid Laurier University Ethics Committee, it does not require ethical approval.

Additional information

Publisher's Note

Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.

Rights and permissions

Springer Nature or its licensor (e.g. a society or other partner) holds exclusive rights to this article under a publishing agreement with the author(s) or other rightsholder(s); author self-archiving of the accepted manuscript version of this article is solely governed by the terms of such publishing agreement and applicable law.
Reprints and permissions

About this article

Cite this article

Southey, S., Morris, R., Nicholas, D. et al. Autistic Perspectives on Employment: A Scoping Review. J Occup Rehabil (2024). https://doi.org/10.1007/s10926-023-10163-x
Download citation

Accepted:

Published:

DOI: https://doi.org/10.1007/s10926-023-10163-x

Share this article

Anyone you share the following link with will be able to read this content:

Get shareable link

Provided by the Springer Nature SharedIt content-sharing initiative

Keywords

# data[].attributes.attachment_link.title
Autistic Perspectives on Employment: A Scoping Review - Journal of Occupational Rehabilitation

# data[].attributes.attachment_link.description
Purpose Inclusive recruitment and employment of autistic adults has garnered recent attention in research and policy. To address a need to better understand the experiences of autistic adults in relation to paid employment, we asked the literature, what are the experiences of autistic individuals (from their perspectives) in competitive employment?

# data[].attributes.headline
Tensions on the spectrum: an inductive investigation of employee and manager experiences of autism.  

# data[].attributes.subject
Tensions on the spectrum: an inductive investigation of employee and manager experiences of autism.  

# data[].attributes.attachment_link.readable_text
Abstract

The increase in autistic individuals seeking employment has led to a growing need for management researchers to consider autism in the workplace. To date, little organizational research has examined this area and what research does exist relies on theories imported from either general psychology (e.g., stigma theory) or reflects a view of autism as a disability. We use the constant comparative method from grounded theory to explore three research questions and to provide researchers and practitioners with recommendations for how autism influences the workplace. Our data sources include (1) written responses from autistic individuals with an employment history and (2) written responses from individuals who have managed autistic individuals in the workplace. Across our two samples, we found largely complementary viewpoints with some of the main categories revolving around disclosure, communication issues or misunderstandings, and management support. Underlying these categories was a desire for equal treatment and an unfortunate ignorance of what autism is. The responses also led us to provide a framework that is organized around the tensions that autistic individuals feel in the workplace regarding disclosure. We conclude by situating our results in the existing literature and discussing the strategic integration of autistic individuals into the workforce.

Access this article

Price excludes VAT (USA)
Tax calculation will be finalised during checkout.

Instant access to the full article PDF.

Similar content being viewed by others

Article

Vanessa Tomas, Shauna Kingsnorth, ... Sally Lindsay

Simon M. Bury, Rebecca L. Flower, ... Darren Hedley

References

Center for Disease Control and Prevention. (2014 ). CDC media briefing on autism spectrum disorder. Retrieved from https://www.cdc.gov/media/releases/2014/t0327-autism-spectrum-disorder.html

Center for Disease Control and Prevention. (2016). Community Report on Autism.

Deloitte Access Economics (2011). The economic benefits of increasing employment for people with disability. Retrieved from: https://www.and.org.au/data/Conference/DAE_Report_8May.pdf

Follmer, K. B., Sabat, I. E., & Siuta, R. L. (2019). Disclosure of stigmatized identities at work: An interdisciplinary review and agenda for future research. Journal of Organizational Behavior.

Glaser, B. G. (1978). Theoretical sensitivity: Advances in the methodology of grounded theory. Mill Valley, CA: The Sociology Press.

Kogan, M. D., Vladutiu, C. J., Schieve, L. A., Ghandour, R. M., Blumberg, S. J., Zablotsky, B., & Lu, M. C. (2018). The prevalence of parent-reported autism spectrum disorder among US children. Pediatrics, 142(6), e20174161.

PubMed PubMed Central Google Scholar

Krumm, N., Turner, T. N., Baker, C., Vives, L., Mohajeri, K., Witherspoon, K., Raja, R., et al. (2015). [supplementary table 3]. Excess of rare, inherited truncating mutations in autism. Nature Genetics, 47(6), 582-588.

PubMed PubMed Central Google Scholar

Lorenz, T., Frischling, C., Cuadros, R., & Heinitz, K. (2016). Autism and overcoming job barriers: Comparing job-related barriers and possible solutions in and outside of autism-specific employment. PLoS One, 11(1), e0147040.

PubMed PubMed Central Google Scholar

McCarthy, J.M., Bauer, T.N., Truxillo, D.M., Anderson, N.R., Costa, A.C., & Ahmed, S.M. (2017). Applicant perspectives during selection: A review addressing "so what?," "what's new?," and "where to next?". Journal of Management, 43(6), 1693-1725.

Morath, E. (2019). America's hidden workforce returns; disabled workers join job market at highest level in years amid low unemployment and stricter rules for claiming benefits. Wall street journal. Retrieved from https://www.wsj.com/articles/americas-hidden-workforce-returns-11548478801

Sabat, I. E., Lindsey, A. P., King, E. B., Winslow, C., Jones, K. P., Membere, A., & Smith, N. A. (2019). Stigma expression outcomes and boundary conditions: A meta-analysis. Journal of Business and Psychology.

Download references

Author information

Authors and Affiliations

1. Department of Management and Marketing, College of Charleston, 66 George Street, Charleston, SC, 29424, USA

Christopher E. Whelpley

2. Department of Organizational Science, University of North Carolina at Charlotte, Charlotte, NC, USA

George C. Banks & Rosalyn Sandoval

3. Department of Communication Studies, University of North Carolina at Charlotte, Charlotte, NC, USA

Jaime E. Bochantin

Corresponding author

Correspondence to Christopher E. Whelpley.

Additional information

Publisher's Note

Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.

About this article

Cite this article

Whelpley, C.E., Banks, G.C., Bochantin, J.E. et al. Tensions on the spectrum: an inductive investigation of employee and manager experiences of autism. J Bus Psychol 36, 283-297 (2021). https://doi.org/10.1007/s10869-019-09676-1
Download citation

Share this article

Anyone you share the following link with will be able to read this content:

Get shareable link

Provided by the Springer Nature SharedIt content-sharing initiative

Keywords

# data[].attributes.attachment_link.title
Tensions on the spectrum: an inductive investigation of employee and manager experiences of autism - Journal of Business and Psychology

# data[].attributes.attachment_link.description
The increase in autistic individuals seeking employment has led to a growing need for management researchers to consider autism in the workplace. To date, little organizational research has examined this area and what research does exist relies on theories imported from either general psychology (e.g., stigma theory) or reflects a view of autism as a disability.

# data[].attributes.headline
Career progression for autistic people: A scoping review (Jade Davies et al., 2024)  

# data[].attributes.subject
Career progression for autistic people: A scoping review (Jade Davies et al., 2024)  

# data[].attributes.headline
Specialist autism mentoring at university - a framework for reframing  (Brian Irvine)

# data[].attributes.subject
Specialist autism mentoring at university - a framework for reframing  (Brian Irvine)

# data[].attributes.attachment_link.title
Specialist autism mentoring at university – a framework for reframing

# data[].attributes.attachment_link.description
Brian Irvine shares a framework for approaching Specialist (Autism) Mentoring in UK Higher Education.

# data[].attributes.headline
Autistic academics seek inclusivity to combat burnout (Spectrum News)

# data[].attributes.subject
Autistic academics seek inclusivity to combat burnout (Spectrum News)

# data[].attributes.attachment_link.title
Autistic academics seek inclusivity to combat burnout

# data[].attributes.attachment_link.description
Many autistic researchers say that academia could be the perfect place for them — but a number of obstacles stand in the way.

# data[].attributes.headline
Autism in academic settings: unleashing unique strengths with adjustments (THE)

# data[].attributes.subject
Autism in academic settings: unleashing unique strengths with adjustments (THE)

# data[].attributes.attachment_link.readable_text
Disheartening statistics emerged in 2022 when the Office for National Statistics' "Outcomes for Disabled People" research showed that only 22 per cent of the autistic population was in full or part-time employment .

Even minor changes can have a significant impact when it comes to reasonable adjustments. It's essential to remember, however, as training from the University of Kent states: "Once you have met one autistic person, you have met one autistic person."
If you would like advice and insight from academics and university staff delivered direct to your inbox each week, sign up for the THE Campus newsletter.

# data[].attributes.attachment_link.title
Autism in academic settings: unleashing unique strengths with adjustments

# data[].attributes.attachment_link.description
Practical accommodations that support autistic individuals in higher education and embrace the strengths they bring to the workforce, fostering inclusion and productivity

# data[].attributes.headline
Empowering autistic academics (Eloise A. Stark)  

# data[].attributes.subject
Empowering autistic academics (Eloise A. Stark)  

# data[].attributes.attachment_link.readable_text
Authors and Affiliations

1. Oxford Institute of Clinical Psychology Training and Research, Oxford Health NHS Foundation Trust, Isis Education Centre, Warneford Hospital, Oxford, UK

Eloise A. Stark

2. Centre for Eudaimonia and Human Flourishing, Linacre College, University of Oxford, Oxford, UK

Eloise A. Stark

Corresponding author

Correspondence to Eloise A. Stark.

# data[].attributes.attachment_link.title
Empowering autistic academics - Nature Human Behaviour

# data[].attributes.attachment_link.description
Nature Human Behaviour - Drawing on her personal experience as an autistic scientist-practitioner, Eloise Stark explores how we can empower neurodivergent populations in academia.

# data[].attributes.headline
Advice for autistic people considering a career in academia (Sandra C. Jones, 2023) 

# data[].attributes.subject
Advice for autistic people considering a career in academia (Sandra C. Jones, 2023) 

# data[].attributes.headline
Neurodiversity in Academia: The Autistic advantage in qualitative research (Helen Kara and Aimee Grant) 

# data[].attributes.subject
Neurodiversity in Academia: The Autistic advantage in qualitative research (Helen Kara and Aimee Grant) 

# data[].attributes.attachment_link.readable_text
Across society, higher education and research, neurodivergent people face barriers to working and achieving their aims. In this post, Helen Kara and Aimee Grant, draw on their experience to discuss how being Autistic has enhanced their approaches to qualitative social science and suggest how research environments can be improved to make them more inclusive of neurodivergence.
Autistic people are often viewed as defective, difficult and disruptive, which may have something to do with our employment rates being disproportionately low. Recent ONS figures show that Autistic people have the lowest employment rates of any Disabled people in England. However, the world is slowly waking up to the fact that with the appropriate support, Autistic people are an asset to the workplace, with some professional roles particularly suited to Autistic strengths. We argue that qualitative research is one of these professional contexts where Autistic people can flourish.

As two late-diagnosed Autistic women who are also qualitative research experts, we were well positioned to think through this topic. We took a strengths-based approach, using the Autistic Advantage, to emphasise the ways in which Autistic people can enhance the social structures around them. Strengths of Autistic people which are relevant for qualitative research include:

Hyperfocus and Autistic 'flow', which enable us to get a lot done in small periods of time - useful when timescales and budgets are tight (which they often are).

Attention to detail - useful when designing research, coding data, and managing budgets.

Creative thinking - always useful, but perhaps particularly when analysing data and identifying patterns, connections, and links.

Autistic empathy - which may be higher than that experienced by neurotypical people - useful in supporting colleagues, participants, and other stakeholders.

Loyalty - useful for employers and research teams in retaining organisational memory.

For these reasons, we argue that within qualitative research, there is an Autistic Advantage. However, the extent of this advantage depends on the work context. In July 2021 the UK Government published its national strategy for improving the lives of Autistic people, which has a chapter about supporting more Autistic people into employment. So far, so good, but it says little about how that can or should be done. We collected and studied literature on how to work effectively with Autistic people, and combined the key points with our own experience. This allowed us to develop practical advice on how to create employment conditions for the Autistic Advantage to flourish, based on the themes of supporting Autistic colleagues, managing Autistic staff, and policies and accessibility services:

Supporting Autistic colleagues

A phrase often repeated is that if you have met one Autistic person, you have met one Autistic person. This is shorthand for the heterogeneity in impairments and needs between Autistic people (and Disabled people more generally), and the need for individualised approaches.

That said, in general, we recommend that you use direct, unambiguous communication with Autistic colleagues. Many Autistic people will prefer that you supplement important verbal communication with written information. For example, before a meeting circulate an agenda and after a meeting circulate notes containing actions and salient points.

Managing Autistic staff

Before any 'problem' is identified, managers should ask about needs relating to communication and sensory issues, and satisfy those needs where possible. Managers should treat the each report of disabling symptoms and requests for adjustments seriously, even if they do not find those symptoms or requested adjustments to be typical based on their knowledge. Disabled people are not a homogeneous group and solutions to impairments are not 'one size fits all'. Disability related accommodations are also not a luxury. Even if it is something that might be 'nice to have' for neurotypical colleagues, it is likely to be truly necessary for an Autistic person to work at their best ability, and may well increase productivity in the long term.

Flexibility is also beneficial. What a Disabled person can do on one day, they may not be able to do on another day. We Disabled people are the experts on our own energy levels and fatigue. In the long run, a flexible approach to our workload is likely to increase productivity. If adjustments are removed or not working properly, Disabled people are likely to be less productive, to use more energy to compensate, or to be at risk of 'burnout'.

Policies and accessibility services
Acknowledgement: This blog post is based on an article published in Contemporary Social Science, the journal of the Academy of Social Sciences, who kindly waived the Open Access fee for our article. We wish to thank the anonymous reviewers who gave us kind and helpful input; if you are one of them, thank you! The editors John Connolly and Jacqueline Barnes, told us, "We were very pleased to publish your article as it helps to shine an important light into the experiences and challenges that face researchers."
If you are a manager of a Disabled person, it is usually your responsibility to advocate for the adjustments they require. Whilst doing this, be sensitive to data protection laws; never share details of any Disabilities without permission.

Managers may turn to organisational disability policies for support, but these may be rooted in ableism, and may not account for neurodivergence. Additionally, within universities, you may have experience of using Disability Services to support students, but these are generally not available to staff. Instead, Occupational Health services are often the first port of call, but staff are unlikely to be expert in neurodivergence. There are experts in neurodivergence who can provide bespoke workplace assessments. In the UK, Access to Work, part of the Department for Work and Pensions commission assessments and packages of support are available to those with a Disability (including being Autistic, Dyslexic and other forms of neurodivergence).

There is an appetite for change in higher education and for creating working environments that empowers neurodiversity beyond adjustments for individuals. Our article was published in November this year and we began tweeting about it the following day. We were not prepared for the astonishing level of interest it generated. Aimee's original tweet was well received, sparking a range of responses. There were also many other tweets, emails, and messages - every single one supportive. We hope our advice - contained in the article and in this blog - will help Autistic researchers, their colleagues and managers to work together in a mutually supportive environment. Furthermore, as two privileged senior researchers, we wanted to show the 'people behind the papers' to reassure other Disabled researchers that they are not alone, and to challenge myths that Autistic people do not make good employees.

There are still too many instances of ableism and discrimination in the employment experiences of Autistic people. It will take many years and significant societal and political change for the Autism-employment gap to be eliminated. Support for Disabled and other marginalised academics is often performative rather than substantive - as reflected, for example, in pay gaps and disability accommodations that are poorly implemented or not implemented at all. Overall, our message is: Autistic people can be a real asset to research teams, and we need accommodations to enable us to flourish. Although managers are responsible for accommodations in many research teams, colleagues can also help by using relevant parts of our advice.

# data[].attributes.attachment_link.title
Neurodiversity in Academia: The Autistic advantage in qualitative research

# data[].attributes.attachment_link.description
Across society, higher education and research, neurodivergent people face barriers to working and achieving their aims. In this post, Helen Kara and Aimee Grant , draw on their experience to discuss how being Autistic has enhanced their approaches to qualitative social science and suggest how research environments can be improved to make them more inclusive of neurodivergence.

# data[].attributes.headline
Autistic academics give their thoughts on university life (The Conversation, 2017)

# data[].attributes.subject
Autistic academics give their thoughts on university life (The Conversation, 2017)

# data[].attributes.attachment_link.readable_text
Where does autism figure when working in higher education? shutterstock

Around 3% of students in higher education are autistic and universities are working hard to listen, understand and meet their needs. But the fact that autistic students can become autistic academics appears to have gone unnoticed.

Autism research is still dominated by approaches which treat it as a "disorder" or a "deficit". Research funding prioritises this " basic science" over work which approaches autism as a " natural human variation" or just difference.

At the same time, though, autistic people and their allies are challenging attitudes and assumptions which stereotype, alienate and deny humanity.

My research aims to give a voice to academics who identify as autistic, Asperger's or on the autism spectrum. It focuses on autistic academics' experiences of research, teaching and being an employee in higher education. Men and women of all ages have already contributed - and they have expertise in fields as varied as sociology, genetics, mathematics and politics.

A voice for the people

Obviously my findings do not speak for every autistic person, because everyone is different, but most people who have taken part believe their autism has helped them in certain areas of their work. For instance, participants talked about how they feel their autism makes them good researchers, because of greater focus, closer attention to detail and, in some cases, an enhanced ability to systematise and see patterns.

On the other hand, social difficulties can inhibit attendance at academic conferences. Networking and collaborating with other researchers might also pose problems, again because of social difficulties.

Turning to teaching, a number of respondents highlighted their logical, organised approach and maintenance of focus. Several also felt that awareness of their own difficulties made them more responsive to students' own struggles. Attention to detail, precision and structure were emphasised again, and one respondent talked about how students appreciated an "undimmed enthusiasm for my subject".

But a substantial proportion also felt their autism had negative impacts on their teaching. These included concerns about eye contact, tone of voice and body language, and problems with confidence and anxiety. Once again, several mentioned the obstacles posed by social interaction with students and colleagues.

Loud and proud?

Employers are becoming increasingly aware of the fact that employing autistic people makes good business sense. But less than half of those who have taken part in this study have disclosed their autism to their employer - the university.

Many of those who have not disclosed expressed fears of stigma or discrimination. And some of those who have disclosed only did so because they felt the need to explain a particular event or behaviour - which suggests these people didn't disclose their autism willingly.

And this apparent reluctance to disclose may well be justified. As employees, some autistic academics have experienced bullying, harassment and direct discrimination.

One participant was also angry about the way some colleagues spoke about autistic students as a "nuisance". Many respondents talked of difficulties when interacting with colleagues, and of finding rules and structures hard to understand.

Equality in the workplace

My research has also highlighted the issue of working environments that cause problems for people with sensory hypersensitivities - such as open-plan offices.

A number of participants also said that they felt they would struggle to progress because they are uncomfortable with things like networking. One emphasised how difficult it can be to operate in an environment dependent on "unwritten agendas, power games and influencing people".

Research has shown how disabled people can be put at a disadvantage because employers want " organisational fit". And in much the same way, autistic people are "locked out" of careers because they are different.

Although autistic people might not describe themselves as disabled, the Equality Act can be used to argue for reasonable adjustments such as changes to the working environment or reviewing job descriptions and tasks - and some respondents had indeed requested such adjustments. Some of these requests were rejected, while other people encountered resistance - while people who had not disclosed their autism were of course not in a position to make such a request.

Ultimately, higher education needs to acknowledge that autistic academics have a lot to give - and with this needs to be an understanding that autistic academics might have different needs in the workplace. This will mean that steps can then be taken to create a higher education working environment which opposes stigma and discrimination - while also understanding and welcoming differences.

Ideally, this would include accommodating and adjusting for the needs of all employees as well as taking specific steps to ensure genuine autism equality in the workplace.
My work in this area is ongoing, and academics who identify as autistic or similar are still invited to complete the survey.

# data[].attributes.attachment_link.title
Autistic academics give their thoughts on university life

# data[].attributes.attachment_link.description
Around 3% of students in higher education are autistic and universities are working hard to listen, understand and meet their needs. But the fact that autistic students can become autistic academics appears to have gone unnoticed. Autism research is still dominated by approaches which treat it as a "disorder" or a "deficit".

# data[].attributes.headline
Autistics working in academia: what are the barriers and facilitators (Sandra C. Jones) 

# data[].attributes.subject
Autistics working in academia: what are the barriers and facilitators (Sandra C. Jones) 

# data[].attributes.headline
Compassionate pedagogy for neurodiversity in higher education: a conceptual analysis    

# data[].attributes.subject
Compassionate pedagogy for neurodiversity in higher education: a conceptual analysis    

# data[].attributes.attachment_link.readable_text
Abstract

The neurodiversity paradigm challenges pathologising accounts of neurodevelopmental differences, including autism, attention deficit disorder (ADHD), dyslexia, developmental language disorder (DLD) and others. From a neurodiversity perspective, these differences in the way people perceive, learn about and interact with the world are conceptualised as naturally occurring cognitive variation, akin to biodiversity in the natural environment, which may bring unique strengths and challenges for individuals. An implication of this approach is that interventions designed to create contexts in which neurodivergent people can thrive are needed, in addition to those that seek to ameliorate individual-level difficulties. In this conceptual review, we consider how higher education can offer a context in which cognitive diversity can be noticed, welcomed and accepted with warmth. In universities, neurodiversity is one dimension of difference within an increasingly diverse student population, which overlaps - but is not synonymous - with disability. We argue that improving experience and outcomes for neurodivergent students should be a priority for universities aiming to produce graduates equipped to tackle the complex problems of contemporary society. Drawing on the foundational principles of compassion-focused psychological therapies, we consider how compassion can be enacted within interpersonal interaction, curriculum design, and leadership culture in universities. We apply the insights of double empathy theory to the problem of overcoming barriers of difference in the classroom. Finally, we make recommendations for Universal Design for Learning (UDL) and strengths-based pedagogical approaches, which create a fit-for-purpose educational environment for the widest possible range of learners. This realignment with the neurodiversity paradigm offers an antidote to bolt-on provisions for students who differ from the neuro-normative, and might enable neurodivergent thinkers to flourish within and beyond higher education.

Keywords: neurodiversity, higher education, compassion, double empathy, Universal Design for Learning

1. Introduction

In recent years, widening access to higher education in the United Kingdom and globally has created a larger, more diverse student population ( Calderon, 2018; Higher Education Statistics Agency [HESA], 2022). Neurodiversity is a dimension of difference that has received relatively little attention in the higher education pedagogical literature, despite there being increasing numbers of neurodivergent students attending university internationally ( Pino and Mortari, 2014; Bakker et al., 2019). Neurodiversity can be understood as naturally occurring variation in the ways that humans perceive, experience and interact with the world, encompassing neurodevelopmental differences such as autism, attention deficit disorder (ADHD), dyslexia, developmental language disorder (DLD), dyscalculia, and developmental co-ordination disorder (DCD) (see Dwyer, 2022 for a discussion of more or less inclusive definitions of neurodiversity). Robust data on outcomes for neurodivergent students in higher education are not currently available; however, existing studies indicate that wellbeing and employment outcomes tend to be poorer in this population in comparison with their peers ( Anderson et al., 2017; Allen and Coney, 2019; Bayeh, 2022).

In this conceptual analysis, we draw on psychological understandings and applications of compassion to consider how universities can support neurodivergent thinkers to thrive. Cognitive diversity is essential in the search for solutions to the complex problems facing the world ( Sulik et al., 2021), and therefore universities must prioritise improved outcomes for neurodivergent students. We propose that this can be achieved by adopting compassionate pedagogies, including universal design for learning and strengths-based approaches ( Gibbs, 2017; Elsherif et al., 2022). Neurodivergent students, like all students, deserve fit-for-purpose learning experiences, and should not hold responsibility for educating their educators about their differences. The structures and policy context of higher education can act as a disincentive to personalised learning and teaching ( Waddington, 2017). Nonetheless, compassion-informed pedagogy, in which educators actively recognise the particular struggles that students face and seek to mitigate them, can be transformative for neurodivergent learners.

2. Neurodivergent students at university

Obtaining a clear picture of outcomes for neurodivergent students at university is complex, not least because many do not disclose their diagnosis, and others may not have a formal diagnosis when they commence their studies ( McLeod et al., 2019; Clouder et al., 2020). Evidence to date, which often relates specifically to autism, dyslexia and/or ADHD, suggests that academic attainment can be good, if students are well supported to complete their studies ( Richardson, 2009; Fabri and Andrews, 2016; Richardson, 2017). However, attrition rates are relatively high in this population, with poor mental health being just one of many contributing reasons ( Van Hees et al., 2015; Ghisi et al., 2016; Griffiths et al., 2019).

It is not difficult to imagine some of the contextual factors that underpin poor retention of neurodivergent students, some of which are discussed here. First, the 'hidden curriculum' at university - that is, the unwritten, and sometimes unintentional, institutional expectations of how students will behave, study, and interact, which are not explicitly taught - tends to exclude minoritised groups from reaching their potential ( Sulaimani and Gut, 2019). Second, neurodivergent students often come to university with a negative schema of education following their experiences at school ( Lithari, 2019; Mesa and Hamilton, 2022a, b). Experiences of non-accepting environments in earlier education can have long-lasting impacts, and can contribute to a negative sense of self, affected wellbeing and reduced quality of life for older students and adults ( Hong et al., 2016). Third, considering some of the specific challenges for neurodivergent students, the near total reliance on written forms of assessment in many degree programmes is a disproportionate barrier for dyslexic students ( Jacobs et al., 2022). ADHDers may find managing independent self-study and processing critical feedback particularly difficult (for an overview of rejection sensitivity in ADHD, see Bedrossian, 2021). For autistic students, achieving a sense of belonging in the university community may be a key challenge: social situations can be overwhelming but unavoidable, and socialising in different ways with peers can attract bullying or result in feelings of loneliness ( Bauminger et al., 2003; Gurbuz et al., 2019). Students often mask their differences, by suppressing natural neurodivergent responses and/or learning and imitating 'neurotypical behaviours' in an attempt to avoid negative responses from others. Masking difference can lead to exhaustion and burnout, disconnection from one's identity, and psychological distress ( Pearson and Rose, 2021).

We suggest that current educational contexts largely illustrate a conditional view of an acceptable student, i.e., a student is acceptable only when fitting to a neurotypical standard. Difference is often construed as negative, and only rarely understood as demonstrating novelty, originality or excellence in academia. For many neurodivergent students, experiences of personal confusion, navigation of multiple identities and labels through which to view themselves, and experiences of bullying and marginalisation, are all threats to holding a robust, compassionate view of the self within a university environment. Understandably, students often assume high personal responsibility for trying to make a success of their education. Many neurodivergent students describe having to act as self-advocates in order make others understand their difference, which can contribute to disenfranchisement from university communities ( Fabri and Andrews, 2016; Elias and White, 2018).

3. Contextual approaches to neurodiversity

Research into autism and other neurodevelopmental differences is undergoing a paradigm shift, away from medical models and towards neurodiversity approaches ( Dwyer, 2022; Pellicano and den Houting, 2022; for alternative perspectives and critiques of the neurodiversity paradigm, see Nelson, 2020; Singer et al., 2022). One key limitation of the medical paradigm in this field is its narrow focus on the individual as the unit of study, with the aim of identifying and ameliorating deficits. In contrast, research from a neurodiversity perspective foregrounds the person-in-context; impairment at the individual level is acknowledged where it exists, but harm associated with impairment is seen as a function of the interaction between the person and their environment ( Singer, 2017; Chapman, 2021). For instance, hyperactivity may be harmful for a child in a school with strict rules on sitting still in class, but harmless for that same child participating in an outdoor education class. It follows that interventions targeting the contexts in which neurodivergent people live, study and work are needed, in addition to existing interventions aimed at improving skills (or, more controversially, modifying behaviours) in individuals. Higher education is one such context, where structures, processes and pedagogies can be designed to be more inclusive for neurodivergent students and staff.

The social environment is central to any educational setting: learning depends on the interactions that take place between the student, their peers, academic and professional staff. Here the double empathy problem ( Milton, 2012) is pertinent. The double empathy problem refers to the reciprocal deficits in understanding that can occur between people who hold different norms and expectations of each other. Where communication preferences and sensory sensitivities vary across neurotypes, this problem can be particularly pervasive. A growing body of experimental research supports the premises of the double empathy problem; for example, neurotypical people are quick to form negative impressions of autistic people on the basis of scant information ( Sasson et al., 2017). Furthermore, certain types of communication, including information sharing, can be more successful within same-neurotype than cross-neurotype pairs ( Crompton et al., 2020). When people see the world from different perspectives, insight and compassion into each other's difference is more helpful than assuming that one experience is normative, while the other deviates from the norm.

In order to overcome double empathy barriers in the classroom, as educators we must reflect critically on our assumptions and practice. This could mean consciously avoiding the interpretation of students' behaviour from a default neuro-normative perspective. What could be the underlying reasons for a student keeping their eyes closed in class, or taking their seat at the last moment rather than queueing or conversing with peers? It could involve examining where our own knowledge of neurodiversity comes from and critically assessing the potentially stigmatising assumptions that we hold. Carefully considering the language that we use when discussing difference can be powerful in creating a more neurodiversity-inclusive learning environment. Avoiding the language of pathology (e.g., symptoms, comorbidities, high/low functioning) in favour of more neutral alternatives (e.g., characteristics, co-occurring considerations, individual abilities or support needs) is a simple modification that can have a meaningful impact on students' sense of place in the classroom, and in turn, how the education community of peers and staff make sense of difference ( Bottema-Beutel et al., 2021). There is good evidence, at least in the Anglophone world, that many autistic people prefer identity-first language (e.g., autistic student) over person-first language (e.g., student with autism), which can imply that the autism is separable from the person ( Kenny et al., 2015; Taboas et al., 2022; see Buijsman et al., 2022 for different terminology preferences in a Dutch sample). Analogous identity-first terminology for other neurodevelopmental differences is not yet clear or settled, but the language of neurodiversity is constantly evolving. Initiating open dialogue with neurodivergent students about their language preferences can help to mitigate the double empathy problem in the classroom.

Unfortunately, in order to access educational support at university via disability services, students often have to use the terminology of the medical model, emphasising their diagnosis and deficit and downplaying their strengths. Negotiating this dual reality is a current tension for many neurodivergent students, which signals the need for change towards universal design approaches. Implementing the insights of the neurodiversity paradigm in universities means going beyond simple adaptations or add-ons to current practice ( Petty et al., 2023). Currently the onus is too often on neurominority students to find a longer way around to meet neuro-normative expectations. To transform practice, learning and teaching must be designed for a neurodiverse student body, and learning contexts created in which neurodivergent students are seen, understood and enabled to thrive. Here, educators can harness the potential of compassionate pedagogy.

4. Learning from applications of compassion in other fields

Various definitions of compassion exist in the psychological and philosophical literatures. Most share two key components: (1) the propensity to notice suffering in oneself and others ( all others, regardless of minority status) without negative judgement and (2) the motivation to act to prevent or alleviate suffering ( Halifax, 2012; Gilbert, 2019). Nussbaum (2001) emphasises both its cognitive, evaluative nature and its teachability; we learn compassion through experience with diverse others (in real-world interactions and in simulated, fictional social worlds) and subsequent reflection on those experiences. In Nussbaum's conceptualisation, a prerequisite for compassionate responses to another's humanity is the acknowledgement of one's own human vulnerability.

Concepts of compassionate others, compassionate memories and compassionate spaces underpin many psychological therapeutic practices, notably within compassion-focused therapy ( Gilbert, 2007). For example, a client experiencing high anxiety and shame might be encouraged to explore early memories of these emotions, to notice where judgements and expectations from others caused a sense of threat, while working therapeutically to harness the soothing potential of compassion. This work might encompass memories from early education of being seen as 'naughty' or 'stupid.' Neurodivergent clients in particular may recall being told that they are not behaving like their peers, that they are not trying hard enough, or may have had their failings repeatedly highlighted by educators. Familiar stories are of not fitting in at school and not being 'good enough' as they are. Cumulative past experiences evoking feelings of threat and shame incentivise masking behaviour (e.g., suppressing stimming, forcing eye contact, copying others' behaviours) which is increasingly recognised as a driver of poor mental health in neurodivergent people ( Miller et al., 2021).

For a person to feel compassion for self and others, they need access to compassionate memories, i.e., memories of an interpersonal interaction with another who is warm, non-judgmental, sensitive to and tolerant of differences. They also need access to 'safe spaces,' places of welcome, belonging and enjoyment ( Lucre and Clapton, 2020). These are experienced and consequently become expected. Such memories may be difficult for neurodivergent individuals to bring to mind, given the dominant societal frameworks of deficit and exclusion ( Botha et al., 2020). Within psychological therapy there is an increasing focus on encouraging the individual to thrive with difference, without intending to treat or reduce the expressions of neurodiversity ( McVey et al., 2021); compassion-focused therapies are increasingly indicated for neurodivergent clients ( Robinson, 2018). This approach can serve as a useful model for education.

Important tenets of compassion in psychological therapy include warmth from the self to the self, and warmth from others ( Gilbert and Bailey, 2000). In contrast, an attack and counter-attack dynamic can be at play for neurodivergent students, whereby feeling misunderstood causes them to respond with annoyance or withdrawal from the education system. 'Winning,' or asserting their learning needs, for the more proactive students will not necessarily resolve the difficulties according to concepts of compassion, because warmth and support are missing. Furthermore, self-compassion requires a desire to grow, to look forward with hope for success and to build on positive attributes of the self. Neurodivergent students' self-belief and ambitions for employment post-graduation are often challenged by negative experiences of academic discrimination ( Cheriyan et al., 2021). Within schools and universities, where being neurodivergent often makes you a more 'troublesome' student, thriving is typically curtailed, with negative implications for future hopefulness. Implementing concepts from the foundational underpinnings of compassion-focused therapy ( Gilbert, 2007) in educational contexts holds promise, if institutions can establish a shared intention to include all students and recognise the mutual benefits that arise from doing so.

We can borrow practical recommendations from other sectors, which are revising their ways of working collaboratively with neurodivergent clients, to develop the quality of our interactions in higher education. Maddox et al. (2020) have drawn attention to the barriers and facilitators to therapeutic working that tend to be put in place by clinicians, care coordinators and service managers within healthcare settings. Their recommendations for clinicians working with autistic clients include: clearly explaining what clients can expect and what is expected of them; establishing mutual understanding of what is being spoken and what is being implied; providing structure for in-person sessions and independent tasks; and considering ways to limit time spent in crowded, brightly lit, or noisy spaces, such as waiting rooms. Considerations for different neurodivergent client groups include the use of planned breaks and switching between tasks to avoid prolonged attentional demand or too-challenging stretches of high-priority work ( Young, 2012). These good practice guidelines from healthcare can often be transferred to the classroom, allowing the unwritten curriculum to be minimised so that students can learn.

In healthcare contexts, compassionate interactions have been shown to calm, but not sedate patients. Adopting a compassionate approach does not make appointments longer and may reduce long-term patient costs, such as fewer onward referrals and better medication adherence ( Trzeciak et al., 2019). If we can adopt similar principles in education, we might expect students to be more relaxed and better engaged, to have less need for supplementary study skills or wellbeing support from universities, to reach closer-to-potential academic achievement and onwards employment. These intentions are currently speculative, awaiting more investment in research.

5. Conceptualising compassion in educational contexts

Educators have a unique opportunity to cultivate compassion within the learning environments that we create. (Note that we advocate for universal compassion, rather than compassion specifically for a minority.) However, the development of compassion and other 'intellectual virtues' receive limited recognition as legitimate learning goals in the current higher education climate ( Maxwell, 2017). Instead, utilitarian values of competition, choice, independence, value for money and individual achievement dominate in many countries ( Sauntson and Morrish, 2010). Waddington (2018, p. 87) argues that, in an era of marketisation, contemporary university cultures in the United Kingdom and elsewhere are often characterised by "subtle, but powerful, competition and striving for prestige and dominance ... [stifling] the conditions in which compassionate pedagogy can survive and flourish." Creating the conditions for a compassionate learning environment can therefore be highly challenging for educators charged with meeting an array of market-driven targets.

Notwithstanding this unconducive context in the sector, students, and especially those in minoritised groups, flourish in learning environments in which they feel that they belong and are valued. Similarly, educators are empowered to create compassionate learning environments where there is a compassionate leadership culture in universities ( Belak and Waddington, 2021). Studies within other organisational cultures have characterised compassionate leaders as: attending to and listening with interest; seeking to understand challenges; empathising; and acting to remove obstacles and obtain resources where they are needed ( West and Chowla, 2017). If these behaviours can be enacted by university leaders, a culture is established which values and supports compassionate pedagogies, to the benefit of students and staff.

Hao (2011, p. 92) characterises compassionate pedagogy as underpinned by "a commitment that allows educators to criticise institutional and classroom practices that ideologically place underserved students at disadvantaged positions, while at the same time be self-reflexive of their actions through compassion as a daily commitment." Social, pedagogical and physical aspects of the learning environment can place neurodivergent students at a disadvantage, which often goes unnoticed. A common theme in the educational experiences of these students is anxiety, triggered by uncertainty of what is required of them in the learning situation, interactions with others inside and outside of the classroom, fear of failure, managing time, perfectionism, and additional causes of stress and fatigue not shared by their peers (e.g., sensory stress), among many other factors ( Gurbuz et al., 2019; Clouder et al., 2020). It is important to note that anxiety is not a characteristic of neurodivergence per se, but rather a likely outcome of cumulative experiences, including marginalisation and stigma, through the lifespan. Additionally, employment struggles, financial hardship and co-occurring mental health conditions are vulnerability experiences that differ between neurodivergent and neurotypical peers ( Griffiths et al., 2019). When neurodivergence contributes to students feeling anxious in the classroom, learning potential and engagement is seriously curtailed. There are negative implications for attendance, joining in when present in the classroom, sharing activities with peers, and for all measures of academic attainment ( LeDoux, 1998; Jones et al., 2019).

Anxiety is in essence a response to threat. In educational contexts, threat can come from pedagogical and organisational practices that encourage students to dwell on their failings, to feel disappointed in themselves, and to doubt their futures (mirroring the threats to self-compassion as conceptualised in compassion-focused therapy; Gilbert et al., 2004). Conversely, education has the capacity to transform the lives of those who have experienced discrimination and oppression ( Freire, 2006). A learning environment where difference is accepted and where each student can contribute and find a sense of belonging can reduce threat, foster self-compassion, and elicit more compassionate responses from others. These experiences build banks of compassionate memories of the self in education.

6. What would compassionate pedagogy for neurodivergent students look like?

Implementing the principles of compassion in higher education settings is more complex than in the context of one-to-one therapy. Educators have to balance the needs and interests of multiple stakeholders; staff workloads are perennially high, and institutional structures and processes tend to be inflexible. Nonetheless, if the challenges posed by the neurodiversity paradigm can be framed as an opportunity to rethink and improve pedagogical practice, this is likely to be to the benefit of all students. In making the following recommendations, we draw on the expertise of neurodiverse, multi-stakeholder teams of students, colleagues and authors (e.g., Spaeth and Pearson, 2021; Dwyer et al., 2022; Elsherif et al., 2022; Farrant et al., 2022).

There is a clear role for university senior leadership teams in improving experience and outcomes for neurodivergent students. Including neurodiversity as a dimension of difference in equality, diversity and inclusion (EDI) reviews and initiatives is an important starting point ( Dwyer et al., 2022). Any campus-wide review, investment and enhancement activity should be driven by neurodivergent staff and students in collaboration with neurotypical allies. Since experiences of discrimination, stigma and bullying contribute to poor educational outcomes for neurodivergent students, investment in university-wide training in neurodiversity is warranted to the same extent as other campus-wide EDI training. Representation matters for student belonging and aspiration; human resource leaders can therefore ensure that hiring practices are neurodiversity-inclusive, and that neurodivergent staff in the university community are appropriately supported to fulfil their roles and progress to leadership positions. In planning for the development of campus estates, leaders can consider the sensory environment (e.g., adjustable lighting, seating selections, noise and heat levels, accessibility of quiet spaces to all members of the university community). Leaders in professional service roles can design student support services that are joined up, transparent to access and simple to navigate to reduce the self-advocacy burden on students. Providing services based on need, rather than disability diagnosis is recommended, and neurodiversity-affirming mental health support services are particularly important ( McVey et al., 2021; Chapman and Botha, 2022; Petty et al., 2023). Finally, investment in transition support programmes into and out of university can impact retention of, and graduate outcomes for, neurodivergent students ( Moriño and Biagiotti, 2022).

For academic staff working directly with students in the classroom, a compassion-informed approach requires that we notice distress (e.g., in relation to sensory stress or high anxiety), actively listen to neurodivergent students, are curious and empathic in our response (mindful of implicit biases and double empathy barriers), and work together with students to allow them to feel that they belong in, and can contribute to, the learning community. It is important that educators are alert to the possibility that neurodivergent students may be masking differences or difficulties, and provide alternative ways for them to communicate their needs to maximise their learning. Useful questions for educators to ask include: How much choice is there for students to demonstrate a range of skills and capabilities? How is this student learning about themselves in a way that is not deficit- or problem- focused? How is their experience in this class contributing to an accumulation of safe and positive memories of themselves in education?

In addition to noticing distress, compassionate educators notice strengths and can harness these to scaffold students' engagement and learning. For example, a student with strong attention to detail might be assigned a role of leading on the data analysis of a research project, monitoring adherence to checklists, protocols or assessment briefs, or finalising presentation materials in a group project. Building in flexibility to assessment schedules could, for example, allow a student with high social anxiety but strong information technology skills to demonstrate their learning in an animated video as an alternative choice to a live presentation in front of an audience. Diversification of assessment types through the course of a programme of study provides all students with opportunities to excel. While narrowly prescribed ways of working are still common in many jobs, increasingly employers are recognising the value of hiring neurodiverse teams and accommodating communication differences ( Krzeminska et al., 2019). Universities can do the same. Similarly, allowing for a variety of communication channels between staff and students (e.g., class discussion forums, direct messages or text-chat, in-person tutorials) accommodates communication differences and allows all students to feel part of a learning community. Students should be empowered to make personal choices about their studies that are enabled by the education infrastructure.

Designing learning to reduce anxiety would involve minimising ambiguity at all levels: ensuring materials are available in advance, utilising exemplars where appropriate, and responding empathetically to requests for clarification, as misunderstandings will almost certainly be a shared responsibility. Expectations of students would be made clear and fully explicit, for example by agreeing a class contract at the beginning of a course of study, which can be particularly helpful in reducing hidden curriculum barriers for neurodivergent students. Regularly highlighting the relevance of course content to learning outcomes (i.e., constructive alignment; Biggs, 1996) supports engagement and management of 'information overload.' As educators we can continuously reflect on the accessibility of our own communication, aiming for maximum clarity, concision and informativeness. Where non-literal language such as metaphor or sarcasm is used, are we providing alternative ways for students to access meaning? Are we allowing adequate time for students to process verbal instructions in the classroom, and/or supplementing with written instructions?

Important concepts of compassion include self-care, empathy and distress tolerance ( Gilbert, 2007). We can learn from research that has explored ways in which neurodivergent people have described their fit-for purpose, personal ways of coping with stress and distress ( Young, 2012; Bearss et al., 2016; Petty et al., 2022). To increase tolerance of distress, is a student able to modify sensory stimuli as the norm, for instance by wearing ear covers? If the physical classroom environment causes sensory stress, is there scope for students to complete tasks in a quieter environment and use online networking to check in through the class? Attendance at in-person classes is often lower in neurodivergent than other student groups for a variety of reasons; self-care might require a student to temporarily withdraw from interactions with other people. Hybrid or blended delivery could be effective in allowing students to continue to access their courses during such periods ( Singh et al., 2021). More important, perhaps, is to meet students where they are in terms of attendance and increase accessibility of classroom learning in consultation with them. This could include reducing attentional demands by presenting information in small chunks, building in regular breaks, finding opportunities for movement where possible, or modifying seating arrangements ( Honeybourne, 2018). These recommendations reflect personal accounts of coping with distress from neurodivergent people; their implementation may reduce disadvantages associated with being in a neurominority, while maintaining the ability to receive education.

7. Universal design for learning

Many of the recommendations in the preceding section align with the principles of Universal Design for Learning (UDL; Rose et al., 2006; CAST, 2018). Fundamentally, UDL is an antidote to bolt-on provisions for students 'with issues,' who are not always well served by overworked staff and systems ( Williams, 2019). Current support tends to operate on a 'disability services' model: assess and diagnose the student; individualise a learning support plan; add in adjustments to core teaching. This model is, perhaps unintentionally, underpinned by deficit thinking. Funding-specific support relies on diagnostic labels, necessitates onerous and lengthy processes, and places an onus on the student to advocate for accommodations. While seeking support for learning, a process which can take several months, a neurodivergent student is likely to experience a poor person-context fit at university, and may escalate from one source of support to the next while appropriate interventions are not available ( Lightner et al., 2012). It is important to note that, within these structural constraints, individualised support via disability services can be compassionate and neurodiversity-affirmative.

As an alternative to bolt-on accommodations, we propose UDL as a compassionate pedagogy. A UDL approach to curriculum design embeds flexibility and choice in order to make learning accessible to the widest possible range of students. Within this framework, information is represented in multiple modalities (e.g., verbal explanations, visual diagrams, written text); students are enabled to express their knowledge in alternative ways (e.g., opt to prepare a written report or an oral presentation); and student engagement is scaffolded (e.g., supporting self-regulation and persistence by giving students autonomy, varying challenge level, choice, and creating a safe learning environment) ( Boothe et al., 2018). The evidence base for the effectiveness of UDL for student outcomes is in its infancy. Existing research suggest that UDL is an effective methodology for improving the learning process for all; students undertaking UDL courses report higher satisfaction, greater engagement, and reduced barriers to learning ( Capp, 2017; Soek et al., 2018). Whether effects transfer to improved attainment and reduced attrition is still to be determined.

If curricula are proactively designed for - and in consultation with - diverse learners, it is possible to move away from the reliance on students disclosing their diagnosis and having to self-advocate for individualised support for learning. Such an approach enables universities to become more neurodiversity-inclusive, while reducing demands on over-stretched student support services.

8. Employability and post-university

Before concluding, it is worth considering one of the many impactful outputs of accessible and compassionate pedagogic practice; that is, a carry-forward of positive academic experiences in terms of student self-esteem, hopefulness and preparedness for the workplace ( Kuriyan et al., 2013; Cheriyan et al., 2021). These conditions occur when students find their place and their strengths in educational settings. Importantly, employers are starting to see the competitive advantage of a neurodiverse workforce and to consider ways to make workplaces more inclusive ( Kirby and Smith, 2021). Overlapping with the application of UDL in education, the following examples of recommended good practice are from accounts of successful employment of a neurodiverse workforce. Recommendations for employers include: offering flexible working hours where possible, considering choice of seating in the workplace, allocating tasks based on employee strengths, explicitly welcoming neurodiversity in the workforce through recruitment and hiring processes, and naming a contact person for consistency and clarity of communication ( Gordon and Fabiano, 2019; Maras et al., 2021; Remington et al., 2022).

Nonetheless, the current disappointing reality for the majority of neurodivergent students is to expect lower likelihood of graduating, accessing postgraduate education, finding appropriate employment that matches their skills and abilities, and enjoying stability in employment ( Scott et al., 2015; Gordon and Fabiano, 2019; Moriño and Biagiotti, 2022). Success in employment builds on an accumulation of positive past experiences, in education and previous employment. In this respect, 'employability' holds onto the coattails of educational practices. The techniques discussed through this paper provide ways in which educators can help neurodivergent students to transition their identity to the workplace, notably at a time of anxiety and when delving into a difficult-to-imagine future ( Vincent, 2019). There are ample opportunities to transfer learning of good practice from education through to employment.

9. Discussion and conclusion

Universities and other higher education institutions ought to be an ideal context for neurodivergent flourishing. Studying at post-secondary level allows for increased independence, autonomy and self-advocacy, for example through the opportunity to follow passions and subjects of focused interest; choice over how, when and where to do independent study; increased flexibility of routines; and opportunities to establish new peer groups around shared interests, all within a relatively safe space. On average, university settings likely exhibit greater tolerance of difference than other contexts, both preceding and following higher education. Universities can therefore play an important role in promoting lifelong wellbeing, holistic identity development and skill learning for neurodivergent students. Collectively, day-to-day experiences of interpersonal interactions that model sensitivity, tolerance and kindness, as opposed to misunderstanding and negative judgement, can be personally transformative and lead to improved employment outcomes.

However, we know that not all neurodivergent students thrive at university, and the barriers to thriving are complex. Many experience high anxiety about exposing their difference, within systems and processes that highlight deficit and put the onus on the student to obtain support. The hidden curriculum can disproportionately exclude neurodivergent students. High demands on language, literacy, numeracy, executive functioning and social interaction in university courses pose specific challenges for individuals, depending on their profile of strength and difficulty. Pedagogical practices that are not designed for cognitive diversity inhibit students from developing a sense of competence and belonging in the learning community. Some neurodivergent students may also require enhanced support to successfully negotiate the transition from home to university, extracurricular aspects of campus life, and the transition from post-secondary education to the workplace, but such support is not universally available. In combination, these barriers can prove overwhelming, with implications for attrition, wellbeing and graduate outcomes.

The neurodiversity paradigm moves the focus for change to contexts, in contrast to the historically dominant medical model assumption that interventions should target deficits in the individual. This shift is beginning to play out in therapeutic, healthcare and educational settings, but there is more work to do. The challenges of educating a neurodiverse student body (and embodying a neurodiverse staff team, through recruitment and mentoring) can be reframed as an opportunity to transform practice. Educators and educational leaders can proactively design courses and systems that are neurodiversity-affirming and neurodiversity-inclusive. At present, pockets of good practice in universities tend to occur serendipitously, rather than as a result of strategic planning. Considering neurodiversity as a dimension of EDI that overlaps with, but is not synonymous with, disability would be an important step towards making university communities more inclusive for their neurodivergent members.

In this article, we have argued that the concept of compassion, as applied in psychological therapies, offers a useful template for educators working with neurodiverse student populations. In practice, this could mean noticing students' distress in the classroom and acting to alleviate it, harnessing individual strengths to increase students' sense of competence, and implementing principles of UDL to increase flexibility in how students access course content and demonstrate their learning. These strategies can help neurodivergent students to build a positive schema of self-in-education, which can feed forward to post-university settings and reduce the harmful impetus to mask difference. Society benefits from cognitive diversity in myriad ways; we call on university leaders and educators to act to make higher education a more compassionate context for neurodiversity.

Author contributions

LH conceptualised and wrote the first draft of the manuscript. SP contributed to conceptualisation and wrote sections of the manuscript. Both authors contributed to manuscript revision, read, and approved the submitted version.

Conflict of interest

The authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest.

Publisher's note

All claims expressed in this article are solely those of the authors and do not necessarily represent those of their affiliated organizations, or those of the publisher, the editors and the reviewers. Any product that may be evaluated in this article, or claim that may be made by its manufacturer, is not guaranteed or endorsed by the publisher.

References

Allen M., Coney K. (2019). What happens next? 2019: a report on the first destinations of 2016/17 disabled graduates. The Associate of Graduate Careers Advisory Services. Available at: https://www.agcas.org.uk/Latest/launch-of-what-happens-next-2019

Buijsman R., Begeer S., Scheeren A. M. (2022). 'Autistic person' or 'person with autism'? Person-first language preference in Dutch adults with autism and parents. Autism:136236132211179. doi: 10.1177/13623613221117 [[PubMed] [PMC free article] [CrossRef] Google Scholar]

Calderon A. (2018). Massification of Higher Education Revisited. RMIT University. Available at: http://cdn02.pucp.education/academico/2018/08/23165810/na_mass_revis_230818.pdf

CAST (2018). UDL and the Learning Brain. Available at: https://www.cast.org/products-services/resources/2018/udl-learning-brain-neuroscience

Chapman R., Botha M. (2022). Neurodivergence-informed therapy. Dev. Med. Child Neurol. doi: 10.1111/dmcn.15384, PMID: [[PubMed] [CrossRef] Google Scholar]

Dwyer P., Mineo E., Mifsud K., Lindholm C., Gurba A., Waisman T. C. (2022). Building neurodiversity-inclusive postsecondary campuses: recommendations for leaders in higher education. Autism Adulthood. doi: 10.1089/aut.2021.0042 [[CrossRef] Google Scholar]

Elsherif M. M., Middleton S. L., Phan J. M., Azevedo F., Iley B., Grose-Hodge M., et al.. (2022). Bridging neurodiversity and open scholarship: how shared values can guide best practices for research integrity, social justice, and principled education. Preprint. doi: 10.31222/osf.io/k7a9p [[CrossRef] Google Scholar]

Farrant F., Owen E., Hunkins-Beckford F., Jacksa M. (2022). Celebrating neurodiversity in Higher Education. The Psychologist. Available at: https://www.bps.org.uk/psychologist/celebrating-neurodiversity-higher-education

Higher Education Statistics Agency [HESA] (2022). Higher Education Student Statistics: UK, 2020/21. Available at: https://www.hesa.ac.uk/news/25-01-2022/sb262-higher-education-student-statistics

Mesa S., Hamilton L. G. (2022b). School Transitions for Autistic People in Mainstream Settings: A Research Report. Available at: https://www.yorksj.ac.uk/media/content-assets/research/institute-for-social-justice/School-transitions-for-autistic-pupils-report.pdf

Petty S., Trickett A., Thompson K., Garbutt R., Saunders M. (2022). Revising our understanding of emotional distress for autistic adults: call for research. Curr. Psychol. doi: 10.1007/s12144-022-03254-0 [[CrossRef] Google Scholar]

Singer A., Lutz A., Escher J., Halladay A. (2022). A full semantic toolbox is essential for autism research and practice to thrive. Autism Res. doi: 10.1002/aur.2876, PMID: [[PubMed] [CrossRef] Google Scholar]

Singer J. (2017). Neurodiversity: The Birth of an Idea. Self-Published.

Spaeth E., Pearson A. (2021). A reflective analysis on neurodiversity and student wellbeing: conceptualising practical strategies for inclusive practice. PsyArXiv [Preprint]. doi: 10.31234/osf.io/dc3gw [[CrossRef] Google Scholar]

Williams M. (2019). Review of Support for Disabled Students in Higher Education in England. Institute for Employment Studies. Available at: https://www.officeforstudents.org.uk/media/a8152716-870b-47f2-8045-fc30e8e599e5/review-of-support-for-disabled-students-in-higher-education-in-england.pdf

Articles from Frontiers in Psychology are provided here courtesy of Frontiers Media SA

# data[].attributes.attachment_link.title
Compassionate pedagogy for neurodiversity in higher education: A conceptual analysis

# data[].attributes.attachment_link.description
The neurodiversity paradigm challenges pathologising accounts of neurodevelopmental differences, including autism, attention deficit disorder (ADHD), dyslexia, developmental language disorder (DLD) and others. From a neurodiversity perspective, these ...

# data[].attributes.headline
How can we enable neurodivergent academics to thrive? (LSE HE blog by Chloe Farahar) 

# data[].attributes.subject
How can we enable neurodivergent academics to thrive? (LSE HE blog by Chloe Farahar) 

# data[].attributes.attachment_link.readable_text
8 comments | 57 shares

Estimated reading time: 15 minutes

8 comments | 57 shares

Estimated reading time: 15 minutes

Chloe Farahar uses her own experience as an Autistic academic to explain how we (neurotypicals in HE) can be less ableist

For many Autistic people[i], to be Autistic means to experience a neurologically different development, where Autistic experience is a natural variation within the human species. (See the glossary of key terms.) An inside-out perspective of Autistic experience advocates for a balanced narrative about what it means to be Autistic, where Autistic people are a culture and community built on shared positive and negative experiences. These shared experiences that connect Autistic people comprise shared and similar experiences of the sensory world; which in turn, shape our shared Autistic functional and pragmatic language and communication which is at odds with non-Autistic people. In this way, we share a common experience in the way that we think, move, and socialise.

Sadly, our shared experiences also include the stereotyping, prejudice, and discrimination due to living in a society that views our difference in terms of pathology. This extends to the systemic ableism that exists in institutions, including academia - where ableism is the disadvantaging of disabled people by creating and maintaining systems that favour non-disabled people as the norm.

Autistics in academia

According to the Higher Education Statistics Agency, as of 2019-2020, I am one of the 175 academics in the UK who are Autistic out of a total of 223,525 academics[ii]. Given the conservative estimate that one in 100 people are Autistic, this higher education statistic feels grossly underestimated. So, why might this be?

The fear of discrimination leads many in academia to hide their concealable stigmatised identity and experiences. This means individuals do not seek reasonable adjustments, or simply are deprived of living an authentic life where they do not have to hide their natural Autistic tendencies to move and regulate via objects (e.g. fidget objects), repeat words and phrases that feel nice to say (Autistic echolalia), wear noise-cancelling headphones, avoid water cooler conversations, and so on.

Owning my weirdness

As an Autistic woman in academia, in recent years, I have come to write, train, and talk on the importance of Autistic identity, culture, community, and space for individual wellbeing - the need to "embrace your weird." This flies in the face of stigma, and certainly wholly contradicts the dominant medical narrative of autism spectrum disorder. Part of this weird ownership, this reclamation of our humanness, is demonstration of pride. Pride in one's Autistic culture and community in the face of extreme discrimination. In the UK, there are a number of Autistic Pride events celebrating who we are as a people and a culture within our own right. A large part of this movement for Autistic pride, of Autistic outedness, is claiming the accommodations and respect needed for our experiences of the world in systems that can disadvantage the disabled and the different.

Embracing my autistic identity as an academic

Disclosing a concealable identity is a choice that many do not take lightly. Although I cannot know empirically, I certainly have worried that my disclosure has lost me academic, project, collaboration, and work opportunities. And yet I am openly Autistic and use my lived experience to inform my teaching and training. I do not shy away from bringing myself to the classroom. I wear earplugs during noisy class discussions, stim[iii] with objects, turn lights off. I do not apologise when I struggle to form sentences or find the words I need. More importantly, in order to support other Autistic people to feel safe to disclose, I have to be openly Autistic, even if this threatens my career prospects.

My academia sense-making is a work-in-progress. I am carving out a space for myself to be able to work and research. I make my own roles. I build on my strengths and ask for accommodations for things I struggle with. I try not to take on more than I know I can manage: I explain I cannot do audio marking feedback due to losing the ability to speak on occasion. I do not put pressure on myself to publish and I compiled guidance for evidence-supported thesis viva adjustments.

My entrepreneurial character is not out of choice, but necessity: I do not interview well; application processes are exhausting, and to the detriment of all other areas of my life. Ultimately, I have learnt that until the world around me changes I must do things my way. If what I need does not exist, I create it for myself and others. I co-created a support programme for Autistic people because it was what I needed, but also to help others avoid the ableist culture of autism and to be humanised as Autistic people. This determination, my values, and skills have led me to focus on stigma-reduction for neurominorities; to develop an accessible educative platform for people - neurodivergent and neurotypical - to learn about Autistic experience ( Aucademy); and begin the arduous task of applying for research funding to demonstrate that our support programme improves Autistic wellbeing.

And while I cannot know if my disclosure has reduced my academic prospects, what I do know is, I am now sought out to work and collaborate on projects because I am Autistic; to offer my perspective on research projects; to be awarded grants to create neurodivergent training for staff to be able to better acknowledge, accommodate, and normalise truly neurodivergent inclusive practices; to deliver training to universities; and to share my perspective with the readers of this blog.

I acknowledge that I am in a privileged position as a white Autistic woman. There are Autistic men who cannot openly stim for fear of repercussions from those around them; Black Autistic people who cannot disclose or be openly Autistic for fear of violence; Autistic queer people who are overlooked in the literature on Autistic experience. Consequently, I call on you to amplify the voices (spoken and typed/alternate communication methods) of my fellow Autistic community members who are further marginalised by intersecting community memberships such as ethnicity, gender, and sexuality.

The future for neurodivergent academics

I think it is safe to say that what might be most important for the Autistic community (and other neurominorities) is that (societally) neurotypical people come to cognitively empathise with neurominorities. Ironically, too often, people who are not Autistic, or of a minority (disabled, neurological, or other minority), struggle to empathise with those who have different sensory, social, and emotional world experiences. Yet, it is empathetic perspective-taking of Autistic people by non-Autistic people that will greatly improve the situation for my community. See My Call to Action sidebar.

Insist on Autistic-developed, led, and delivered training - and pay those Autistic trainers: There is an ongoing practice of hosting "autism" training delivered by organisations and charities, paying non-Autistic trainers. This training typically falls short of the lived-experience narrative and practical recommendations for accommodating Autistic people in the workplace. There is a difference between learning about the theory of autism as a pathological concept and learning about neurodivergent experiences and practical recommendations as delivered by seasoned Autistic trainers.

Read up on the double empathy problem: Autistic people are not deficient in communication ability. When together, Autistic people manage to understand one another due to similar frames of reference and experience of the world. Communication difficulties arise during cross-neurotype interactions i.e., non-Autistic and Autistic. Quite simply we speak different languages. Autistic people already work incredibly hard to understand the language and experiences of non-Autistic people; we ask that you learn our language and culture so that we can meet one another on a more equitable footing.

Take advice from Autistic staff and trainers: Finally, and importantly, I challenge universities to develop Inclusive Teaching and Working Plans with their student support services, human resources, and most importantly, actually Autistic personnel and/or trainers. Putting into practice support for your valued disabled academics will lead to a less stressful working environment for us, and you will have enabled colleagues to become the role models students, with and without inclusive learning plans, need. What better way to learn how to make your institution inclusive of diversity than from the people teaching your students?

Endnotes

[i] Autistic people, not "people with autism spectrum disorder." Autistic is what I am, not something I have, in the same way that I am a white woman, not a "person with whiteness and femaleness."

[ii] Data sourced from the Higher Education Statistics Agency pages Who's working in HE?: Personal characteristics/HE academic staff by disability and academic employment function, Academic years 2014/15 to 2019/20. The university academic staff figure is based on all employment functions (teaching; research; teaching and research; etc.); terms of employment (fixed-term; open-ended; etc.); and modes of employment (part-time; full-time; etc.).

[iii] Stimming is the term Autistic people use to refer to self-stimulatory behaviour, which include means of (often repetitive) movement such as rocking, fingernail flicking, or tapping, and the repetition of words or phrases said out loud (echolalia) or internally (echolagia) (cf. Kapp et al., 2019).

Image: Meme by Chloe Farahar

____________________________________________________________________________________________

This post is opinion-based and does not reflect the views of the London School of Economics and Political Science or any of its constituent departments and divisions.

____________________________________________________________________________________________

Chloe Farahar

Chloe Farahar is an Autistic academic and consultant at the University of Kent. She is the co-founder of So, You're Autistic? and Aucademy, and the creator of Stigmaphrenia.

Posted In: Shifting Frames

# data[].attributes.attachment_link.title
How can we enable neurodivergent academics to thrive? | LSE Higher Education

# data[].attributes.attachment_link.description
8 comments | 57 shares Estimated reading time: 15 minutes 8 comments | 57 shares Estimated reading time: 15 minutes Chloe Farahar uses her own experience as an Autistic academic to explain how we (neurotypicals in HE) can be less ableist For many Autistic people[i], to be Autistic means to experience a neurologically different development, where Autistic experience is a natural variation within the human species.

# data[].attributes.headline
Celebrating Neurodiversity in Higher Education (BPS) 

# data[].attributes.subject
Celebrating Neurodiversity in Higher Education (BPS) 

# data[].attributes.attachment_link.readable_text
Understanding the prevalence of neurodivergence in higher education is far from a straightforward task. As Clouder et. al (2020) note, a reliance on self-disclosure, the tendency to be condition-specific, as well as definitional variations, means that accurate statistical data are difficult to come by. What we do know is that 1 in 7 people in the UK is neurodivergent and that student numbers are at their highest level ever - with over 2.5 million students currently enrolled on higher education courses. The number of neurodivergent students is, therefore, likely to be significant. Nonetheless, traditional perspectives on neurodivergence - as a deficit and barrier to education - continue to cast a long shadow on learning and working in higher education.

Drawing on our experience as academics and students, we offer practical suggestions for an inclusive, neurodiverse approach to learning and teaching that would positively transform higher education for students and lecturers alike.
Defining neurodiversity
Asasumasu uses neurodivergent as an umbrella term for a number of conditions, including autism spectrum disorder (ASD), attention deficit hyperactivity disorder (ADHD), cerebral palsy, Down syndrome, dyslexia, dyspraxia, dyscalculia, Tourette's syndrome, acquired brain injury, and mental health disorders. The term 'neurodiversity' was coined in the late 1990s by Sociologist, Judy Singer, with the overarching goal to herald a shift in society's perceptions of neurodivergence away from a deficit model and toward one in which neurodiversity is viewed as a difference in function, thereby levelling the playing field for everyone. 'Spiky profiles', for example, describe how individuals can be exceptionally high performing in some areas while struggling in others. The primary application of neurodiversity is in societal beliefs, educational accessibility, and the workplace.

Neurodiversity contrasts with the medical model, which often viewed neurodivergence as something to be classified and treated, and conditions as isolated rather than co-occurring - such as ASD and ADHD. Singer describes neurodiversity as a subset of biodiversity and emphasises that humankind is both enriched and reliant on neurodiversity. Growing evidence suggests the importance of moving toward a Biopsychosocial model that integrates psychological theory and neurodivergent perspectives. In a higher education setting, this would mean developing progressive interventions that support respectful engagement while addressing specific barriers and health difficulties that individuals may face.
Neurodivergence and Higher Education
Higher education has historically been a place reserved for the privileged, leading to multiple barriers to access for neurodivergent people ( Waisman and Simmons, 2018). Although in recent years increasing numbers of people have applied for, and successfully attained places at university, it nonetheless remains the case that pupils from the most advantaged areas are more than twice as likely to progress to higher education as those from the most disadvantaged areas. In addition, universities are spaces in which some individuals find it easier to demonstrate their full academic potential than others. This contributes to a narrow understanding of the relationship between neurodiversity, intelligence and achievement, which in turn reinforces the stigma towards neurodivergence which discourages disclosure amongst both students and staff.

Approaching neurodivergence as a weakness rather than a strength also contributes to neurodivergent people being considered incapable and given academically inappropriate education and opportunities. Moreover, this intersects with epistemic injustice (ableism, racism, classism), which also negatively impacts academic access awards, retention, progression and completion ( Bhakuni and Abimbola, 2021, Olivos, 2006). At the same time, and while a legal requirement, reasonable adjustments can be perceived as giving 'unfair advantages' rather than mitigating proven, pre-existing disadvantages.
Reconfiguring responses to neurodiversity through the lens of inclusivity
Humankind is enriched culturally, and cognitively and is physically dependent on neurodiversity. The inclusion of more diverse individuals in the education system is fundamental to our growth. The social model of disability acknowledges that it is, at least in part, environmentally determined and that failure to mitigate disability is a cause of disability. Applying this to higher education, rather than offering prescriptive adaptations for specific profiles, which are bound to demonstratable diagnoses, innovative and holistic approaches to accessibility are needed.

The pandemic has highlighted how the application of technology can be used to support inclusivity. Indeed, innovative and nuanced approaches to accessibility have positively correlated with academic and workplace success and reduced isolation. Valuing neurodiversity means drawing upon it directly, through experts-by-experience. There is a wealth of knowledge within the neurodivergent community, which should be involved in shaping the learning experience. Experts by experience can supply significant education and guidance both clinically and practically and can support both neurodivergent and neurotypical people to craft academic environments that better cater to diversity more equitably.
Creating a neurodivergent friendly university
Entering higher education can be stressful for neurotypical people, but for neurodiverse people, it can prove particularly challenging if there is little or no understanding of their needs. Moreover, concerns about disclosure and fear of stigma and labelling can result in a significant gap in terms of required support and what is provided. While the Equality Act 2010 requires that accommodations be made as soon as an institution becomes aware of an individual's disability, or can be reasonably expected to become aware of it, a system based on inclusive practices would allow members of staff and students to work in the environment that does not disadvantage them and provides a more positive base-line experience.

It is critical for organisations to become fully aware of the ways in which neurodiversity can present in students and academic staff in order to ensure that learning and workplaces are welcoming and inclusive environments for all. This will assist them in identifying and disseminating common difficulties and perspectives, as well as the many benefits that come with being neurodiverse.

The technological adaptations made to learning and teaching during the pandemic have accelerated changes that can be further developed to create an inclusive, neurodiverse approach that will positively transform higher education for students and lecturers alike.

Below we set out 15 practical steps that can be taken to achieve a neurodiverse friendly university.

Adoption of a relaxed pedagogical approach (Acton and Hujig) allowing for more breaks during teaching, the opportunity to stand up and walk around and being sympathetic to individual needs including that attendance may not be consistent but that this does not mean work is not being completed.

Understanding that some people learn better and are more comfortable if they have their eyes closed or undertake another activity (such as crocheting) as this keeps them in the moment and prevents them from zoning out, which can often happen to neurodivergent people.

The physical space of teaching should be neurodiverse aware in terms of lighting, sound and use of space.

Content and pace of teaching and university meetings should be mindful of the diversity of needs.

Sympathetic responses to requests for more information reduce anxiety and confusion.

Adoption of neurodiverse-appropriate language and stop using outdated terms such as low-high functioning.

Awareness that neurodivergent students may be entering higher education as mature students, having likely experienced multiple issues during their time in education and established other areas in life like family or work. This may add to the list of daily struggles a neurodivergent student faces.

Support and training to staff about what to do once a diagnosis has been shared.

Greater understanding that extensions to deadlines are reasonable adjustments for a disability.

Review of assessments to ensure that they are neurodivergent friendly or ensure that alternative assessments are available.

Materials should be prepared with the needs of neurodivergent people in mind in terms of background colour, reducing large blocks of text, the inclusion of key words.

Different formats of study including part-time or online programmes should be available.

Clarity in terms of assignment details, deadlines, and expectations. Ambiguity can be particularly problematic, so precision and further explanation is helpful. Allowing students to write their own assessment questions can help.

Exemplars are extremely helpful for neurodivergent people. Spoken and unspoken information can be conveyed more simply by showing an example of what is needed.

Individual support and/or a peer buddy to help students and staff navigate their studies/workplaces.

All gain, little pain
The overarching goal of creating neurodivergent friendly universities is to level the playing field, which needs a greater representation of diversity in higher education from both staff and students. The changing face of higher education in terms of increased participation and the hybrid teaching model opens up significant opportunities for inclusion. The current landscape shows a growing recognition of the significance of cultivating an inclusive culture in which neurodivergence is better understood and celebrated.

Neurodivergent people are more likely to access education as mature students and are likely to be balancing multiple responsibilities such as family, work, and home life, as well as feeling nervous about returning to an educational setting after a significant break. In addition, they may have previously experienced a difficult time in education, which has eroded confidence. It is critical to understand that a more level playing field requires a cultural shift and concrete interventions, not just reasonable adjustments in terms of software and extensions, despite the importance of these components. Such an environment needs to be created at the point of staff and student recruitment, and represent diversity, acceptance, and facilitate and encourage those who may lack confidence and have faced discrimination.

A greater representation of neurodiverse academics in the sector would be central to this cultural shift. Historically, the higher education environment for academic staff has presented several challenges, such as during the interview process, disclosure, and the implementation of reasonable adjustments. It is common practice to ask an employee what they need to perform their duties; however, it can be difficult for people to articulate what they need or know what can be put in place; a more balanced dialogue would be beneficial. Specific needs of neurodivergent employees in the workplace include social fatigue, autism burnout, and common co-occurring neurodivergent conditions. Autism, for example, affects social functioning, it is also essential to recognise that there may be specific barriers due to processing difficulties. While neurodiversity has a number of notable strengths, including creativity, a sense of social justice, hyperfocus, and innovation, there is an expectation in academia to perform in a competitive world, which has historically placed a premium on specific aspects such as networking and output in a high-pressure environment. It is important to rethink this model, prioritise the whole person, and recognise that what is needed in higher education is a supportive and nurturing culture.

Equality can be achieved through listening and responding, understanding the barriers and specific health considerations that people face as a result of their condition, celebrating strengths, and creating a safe and healthy work and study environment that allows everyone to grow and thrive.
Finola Farrant, Dean of the Faculty of Social Sciences at Arden University Emma Owen, Psychology Lecturer at Arden University Fawn Lavina Hunkins-Beckford and Marta Jacksa, Level 4 BSc Psychology students at Arden University References
Acton, K. and Huijg, D. (2020) Relaxed pedagogy: Relaxing teaching and learning in the university, Conference Paper for Building the Post Pandemic University.
Relaxed Pedagogy: Relaxing Teaching and Learning in the University - The post-pandemic university (postpandemicuniversity.net)
Bhakuni, H. and Abimbola, S. (2021) Epistemic injustice in academic global health. The Lancet Global Health, 9(10), e1465 - e1470. https://doi.org/10.1016/S2214-109X(21)00301-6

Clouder, L., Karakus, M., Cinotti, A., Ferreyra, M.V., Fierros, G.A. and Rojo, P. (2020) Neurodiversity in higher education: a narrative synthesis. Higher Education 80: 757-778.

Daley, S. G. and Rappolt-Schlichtmann, G. (2018) Stigma Consciousness Among Adolescents With Learning Disabilities: Considering Individual Experiences of Being Stereotyped. Learning Disability Quarterly, 41(4), 200-212. https://www.jstor.org/stable/26742907

Olivos, E. M. (2006). Racism and Deficit Thinking. Counterpoints. 290: 41-59. http://www.jstor.org/stable/42979662

Singer, J. (1998) Odd People In: The Birth of Community Amongst People on the "Autistic Spectrum": a personal exploration of a New Social Movement based on Neurological Diversity. A thesis presented to the faculty of Humanities and Social Sciences in partial fulfilment of the requirements for the degree of Bachelor of Arts Social Science (Honours), Faculty of Humanities and Social Science, University of Technology, Sydney, 1998.

Waisman, T., & Simmons, M. (2018). Autism Spectrum Disorder and the Implications For Higher Education: A Literature Review. The Journal of Educational Thought (JET) / Revue de La Pensée Éducative, 51(3), 317-338. https://www.jstor.org/stable/26873076

# data[].attributes.attachment_link.title
Celebrating neurodiversity in Higher Education | BPS

# data[].attributes.attachment_link.description
Understanding the prevalence of neurodivergence in higher education is far from a straightforward task. As Clouder et. al (2020) note, a reliance on self-disclosure, the tendency to be condition-specific, as well as definitional variations, means that accurate statistical data are difficult to come by.

# data[].attributes.headline
How to be more neuro-inclusive in the workplace: a guide for HR (everymind at work)

# data[].attributes.subject
How to be more neuro-inclusive in the workplace: a guide for HR (everymind at work)

# data[].attributes.headline
Welfare Pack to help ADHD in the workplace (ADHD UK)

# data[].attributes.subject
Welfare Pack to help ADHD in the workplace (ADHD UK)

# data[].attributes.attachment_link.readable_text
We have created a welfare pack to help people with ADHD in the workplace. It is designed to educate on what it means to have ADHD in the workplace, and to aid the conversation between an employer and an employee with ADHD, with the aim of increasing mutual understanding and to help identify helpful reasonable accommodations.

This deals with the very important issue of people's jobs and careers in the workplace, so we must issue a disclaimer that whilst every effort has been made with it, that it is used at your own risk.

The welfare pack is constructed of three sections :

An introduction to ADHD from the perspective of the employer. For the conversation to be impactful it is essential that the employer has a good understanding of ADHD.

A structured conversation. This aims to ensure a well-rounded, disability-focused conversation between the employer and the person with ADHD. Without structure we've found the conversation can often be too short and focused on "problems " rather than traits.

A list of ideas for workplace adjustments. Reasonable adjustments that have come out of our own research. We name it "Ideas" so as not to close off any adjustments that might come out of your meeting.

We welcome feedback on the program to continue to build and enhance it.

If you are using the pack and want support on it you can access free support through our drop in advice clinics we also offer individual private support for both employers and employees via our corporate support services.

If you've downloaded previously and are checking for updates the current pack is Version 220314.

# data[].attributes.attachment_link.title
ADHD and Work | Welfare Pack to help ADHD in the workplace

# data[].attributes.attachment_link.description
A welfare pack created to help people with ADHD in the workplace, designed to educate on what it means to have ADHD in the workplace, and to increase mutual understanding

# data[].attributes.headline
Is your organisation neuroinclusive?  (CIPD Podcast)

# data[].attributes.subject
Is your organisation neuroinclusive?  (CIPD Podcast)

# data[].attributes.attachment_link.title
CIPD | Is your organisation neuroinclusive?

# data[].attributes.attachment_link.description
It’s estimated that 1 in 5 people are neurodivergent in some way, amounting to a significant proportion of any workforce. While awareness of neurodiversity may have improved in recent years, how neuroinclusive is your organisation?

# data[].attributes.headline
The Silent Struggles of Workers with ADHD (BBC)  

# data[].attributes.subject
The Silent Struggles of Workers with ADHD (BBC)  

# data[].attributes.attachment_link.readable_text
When Christian got laid off in late 2022, he wasn't surprised. The 31-year-old, based in New York City, knew he'd fallen behind on his projects as a management consultant, and underperformed with essential job duties.

"I had a tough time grappling with the sorts of executive functioning that our world operates by, like being able to set up meetings, follow through with things, focus and be detail oriented," he says. His manager had pointed out these failings for months, which is why his termination was hardly shocking.

It's not that he consciously slacked at work, says Christian - his ADHD got in the way. Christian has been living with the diagnosis of attention-deficit hyperactivity disorder since he was 15. It helped put a name to why he struggles with certain tasks his peers often don't - the same things that ultimately got him sacked. And while his ADHD was mostly manageable through university, its effects ramped up when he got into the workforce. It's held him back ever since.

Global data from 2020 estimates the rate of adult ADHD at 2.58% (yet many people remain undiagnosed, especially in minority communities). This means millions experience hurdles like Christian's - and some don't even know why. But even for people who do have a label for their struggles, a diagnosis isn't necessarily a fix; many workers with ADHD experience challenges that can inhibit success. And whether they reveal their issues to managers or keep them private, the effects of ADHD follow them around in their careers, affecting their job security, career options, work relationships and even how they feel about themselves.

Yet as ADHD diagnoses tick up, so too has awareness - and this can help contextualise these workers' struggles for both colleagues and employers, and potentially illuminate new pathways for support.

Some workers with ADHD find it hard to get started, and differences like these can send them into a self-judgement spiral (Credit: Getty Images)

More than 'kids who fidget'
ADHD is not just about oft-stereotyped 'squirmy' kids and people who get distracted easily, says Texas-based Tracy Winter, an executive and leadership coach at Nerd Coach, who specialises in neurodiversity. Instead, ADHD is a complex neurodevelopmental disorder, which manifests in diverse symptoms and behaviours (though the word 'disorder' is controversial, points out Winter, who also has ADHD; she prefers to look at it as a "different kind of brain"). The ADHD brain isn't necessarily flighty, she explains - anatomically, it structurally looks different and functions differently.

People with ADHD each experience its effects diversely, says Henry Shelford, chairperson and co-founder of charity ADHD UK, and there's no way to know how it'll appear in someone's life. Some struggle with being on time, or keep a desk that looks like something exploded, for instance; others are neat as a pin and always punctual, yet can't stop themselves from interrupting in conversation. Some people, says Winter, only tend to do what they're interested in - "what lights up our brains" - which causes them to de-prioritise other urgent tasks.

Its effects in the workplace can be particularly acute, where norms around behaviour and processes can drive bosses to label ADHD employees lazy, disengaged or incapable. "ADHD traits can be really badly misinterpreted," says Shelford. "If I struggle with timeliness, you're going to think I don't care about my job. If I forget something, you might just conclude I'm dumb."

Beyond bosses' perceptions, often, these workplace struggles can make workers with ADHD judge themselves, too, causing damaging emotional impacts.

Rebecca Phillips Epstein, a television writer and essayist who was recently diagnosed with ADHD, struggled constantly in her early career to show up to meetings prepared and on time as well as hit deadlines. The issues only compounded as she climbed the career ladder. And while she could usually manage on the fly, she says she felt terrible constantly existing on the edge of failure.

"As I got older, the world got bigger... I started to slip, and I started to struggle," explains Epstein, now 37. Epstein felt she "should be able to do what everyone else can do", so she wound up "torturing" herself, balancing perfectionism with a feeling of being incapable of performing as expected.

Christian, too, has been down on himself, despite knowing he's neurodivergent (someone whose brain differences affect how their brain works). "There's a whole element of shame and guilt," he says. "[Your behaviours] start to close doors of opportunity, and then those doors are shut ... When I just forget or stall something until last minute, I start to go down the spiral. 'Why couldn't I do this? Why aren't I good enough? Why can't I do what this person could do?'"

This self-judgement is one of the problematic knock-on effects that can send people with ADHD into negative emotional states. "There can be an element of, like, 'why bother, when I'm not going to do it right? I'm just going to get [a] negative response', says Winter. This can trigger a common reaction of "rejection sensitivity dysphoria" , which she says "is a much deeper feeling of rejection at a critique" - one that can erode self-confidence and emotional wellbeing. And although rejection sensitivity is not unique to people with ADHD, it can be exacerbated in people with the condition.
The problem with 'masking'
Often, people with ADHD are uneasy about asking for help, because it means announcing their diagnosis.

The stigma of ADHD is still very present - it can be viewed as a condition for children, or something that isn't much of a challenge. "There are plenty of people still out there who don't believe in ADHD," says Winter. This can lead to scepticism of the idea that some people's brains function differently as a result.

Many workers instead engage in "masking" to compensate. "It's an idea of 'who do I need to present as to be accepted?' ... restraining oneself from a lot of natural impulses" just to fit in with colleagues, she says. Masking can be effective for a short period of time, but it is rarely sustainable and often depleting. "It's almost like minimising your own identity to conform with social norms ... It's uncomfortable, and it's exhausting, and if you do it enough, you can lose track of who is behind the mask."

Some workers with ADHD choose to keep their diagnoses and struggles secret for fear of judgement, which means they can't get the accommodations they need (Credit: Getty Images)

For workers who do come forward about their diagnoses, however, the conversation can be risky. In some situations, asking for accommodations - like fewer meetings or different working hours - may spur bosses and colleagues to view them as difficult to work with, or not cut out for the workflow of a team.

That's what Kim To found when she worked in finance in London in her early 20s - a position she thought of as a dream job. But, she says, "I was crying every single day." She was so tired from masking, she became overwhelmed.

To help her succeed, she asked her boss for bits of help - an assistive app for grammar and spelling, and the ability to work from home away from distractions. But her requests were met with corporate consternation. When she tried to work around her challenges by creating her own systems, spreadsheets and schedules that other colleagues didn't use, she says people would tell her that she was "just making excuses" for why she couldn't perform like everyone else, or needed special treatment.

Eventually, To stopped asking for accommodations, and tried to function like her colleagues. But this didn't work, either. "People would observe me and think 'oh, she's not really cut out for this industry', she says. "It wasn't so much the workflow. I was actually very good at the work and I liked the work. It was because I was constantly trying to conform." She ultimately had a breakdown, and left the world of finance. During the next five years, she began and quit several more jobs, always finding herself out of place. Although she didn't have an ADHD diagnosis at the time, she now realises her executive-function disorder was at the core of her struggles.

Even for high performers, some bosses may question the need to provide accommodations, says Winter: "If [managers] don't see where the challenges are, why would they do anything to address them?" But, in many cases, she says a worker's strong performance may come from masking to ultimately detrimental effects.
Forward steps
Workers with ADHD will almost always have challenges in the workplace, even if they are able to work with understanding and accommodating bosses, or get the assistive tools they request. But things may be looking up, at least in part.

As ADHD diagnoses have increased in the past decade, Sheldon says this knowledge has enabled more people to seek help from their employers. Some managers may also be more open due to rising awareness - in some cases, as some see diagnoses within their own families, says Winter.

Plus, the pursuit of a more accommodating workplace has had an unlikely hero: Covid-19. Prior to the pandemic, working flexibly was rare, and it was difficult for all employees to make the personal adjustments that could help them succeed. Now, far more people have autonomy over how and where they do their jobs. So, as work cultures begin to become more adaptable than they once were, managers are increasingly aware workers can thrive in untraditional work cultures - something that can be particularly helpful for people with ADHD.

Of course, educating employers and making workplaces more inclusive is important, too. Now 28, To has become a coach and speaker who works with both employees and corporations to bring awareness to the challenges and strengths of people with ADHD. She says neurodiversity training and workplace adjustments benefit everyone.

"People think accommodations need to cost a lot of money. A lot don't cost anything at all," she says. These adjustments can be software changes that help make screens more readable, providing quiet space where interruptions are limited or observing strict calendar or meeting boundaries to avoid unexpected disruption. To also believes employers need to stop thinking of these accommodations as favours for workers. "You're not giving someone an unfair advantage. You're just giving people choice. And giving people choice means better outcomes."

In the meantime, however, workers with ADHD may be on the back foot, especially if they're not in an environment with supportive management.

As for Christian, he's secured a new job. But he's fully aware he'll be up against the same challenges he experienced in his last role. "Ultimately, we live in a world where we're judged by the things that most neurotypical people have an easy time doing, but neurodivergent [people] have a much more challenging time doing," he says. "And that's going to be the case whether I'm in manufacturing, or coding or selling. It doesn't matter."
Christian's surname is being withheld for job-security concerns

# data[].attributes.attachment_link.title
The silent struggles of workers with ADHD

# data[].attributes.attachment_link.description
When Christian got laid off in late 2022, he wasn't surprised. The 31-year-old, based in New York City, knew he'd fallen behind on his projects as a management consultant, and underperformed with essential job duties.

# data[].attributes.headline
Recommendations for Employers Concerning the Management of Employees with ADHD (Barkley, 2013)

# data[].attributes.subject
Recommendations for Employers Concerning the Management of Employees with ADHD (Barkley, 2013)

# data[].attributes.headline
Stress and work-related mental illness among working adults with ADHD: a qualitative study (Oscarsson et al., 2022) 

# data[].attributes.subject
Stress and work-related mental illness among working adults with ADHD: a qualitative study (Oscarsson et al., 2022) 

# data[].attributes.attachment_link.readable_text
Show authors

BMC Psychiatry 22, Article number: 751 (2022) Cite this article

10k Accesses

3 Citations

13 Altmetric

Metrics

Abstract

Background

Though many adults with ADHD underperform professionally, are more stressed, and have more days of sickness absence compared to adults without ADHD, few studies have explored the experience of working as an adult with ADHD. This study explores the general experience of working with ADHD, including stress and work-related mental illness.

Methods

Semi-structured telephone interviews were conducted with 20 working adults with ADHD. Interview topics included how the ADHD diagnosis and/or symptoms of ADHD may have affected participants on the job, how work may have affected participants' well-being, and the need for support and accommodation. Qualitative content analysis was used to explore verbatim transcripts from the interviews.

Results

The analysis yielded three themes that describe some of the challenges of working with ADHD: Working and living with ADHD, Needs, and Special abilities, with a total of eight subcategories. Subcategories were Specific challenges; Relationships and cooperation; Negative consequences; Planning, prioritization, organization, and structure; Support, interventions, accommodations, and aids; Openness, understanding, and acceptance; Strategies; Strengths and qualities.

Conclusion

Further knowledge about the challenges of working with ADHD is needed in workplaces; where organizational support is lacking, much in terms of accommodations and aids is up to the employee, and the disclosure of diagnoses may be associated with great dilemma.

Peer Review reports

Background

Adults with attention deficit hyperactivity disorder (ADHD) may have particular difficulties balancing work, leisure, and family, and run a high risk of suffering from mental illness. ADHD is characterized by symptoms of inattention, hyperactivity, and impulsivity. It is one of the most common psychiatric disorders among children and adolescents, and for most patients, symptoms persist throughout adulthood, with associated negative outcomes on both individual and societal levels [ 6]. Worldwide estimated prevalence of adult ADHD varies between studies, depending on population, methods, and diagnostic criteria, but is estimated to be between two and five percent (e.g., [ 7, 8]).

Many adults with ADHD underperform academically and professionally, compared to their intellectual potential [ 9]. ADHD adults report significantly higher work impairment than controls regarding performance and effectiveness as well as attendance, teamwork, and interaction with supervisors [ 10]. According to Adamou et al. [ 11], while adults with ADHD may be highly motivated employees, ADHD-related difficulties will soon begin to adversely affect work performance. Some manage to compensate with administrative support or modifications to the working environment, others with well-chosen careers such as creative professions or elite sports, but symptoms of inattention, hyperactivity, and impulsivity are limiting in all but some workplaces. Many adults with ADHD have more difficulty than others managing time, organizing work, prioritizing tasks, following instructions, and regulating emotions. While some can hyperfocus on interesting tasks, this may increase the risk for workaholism.

The relationship between workaholism and ADHD has been demonstrated by Andreassen et al. [ 12], among others. In addition to the ability to hyperfocus, Andreassen et al. also suggest a compensation hypothesis where adults with ADHD may spend evenings and weekends working to perform on par with their colleagues or to work without distractions. Furthermore, Andreassen et al. suggest that the inattentive nature of ADHD may lead to procrastination and perfectionism, while the impulsive nature may cause individuals to take on more tasks than they can handle. This may be aggravated by hyperactivity, which, combined with difficulties relaxing, may lead to stress and occupational burnout.

The relationship between symptoms of ADHD and stress has been demonstrated by Combs et al. [ 13], among others. They found inattention, rather than hyperactivity, to be the most consistent predictor. Rogers et al. [ 14] demonstrated that adults with ADHD were more fatigued than controls, while Brattberg [ 15] showed a strong association between ADHD, burnout, and long-term sick leave. In a large population-based study of twins, Friedrichs et al. [ 16] found that symptoms of ADHD were associated with an increased risk for stressful life events, such as divorce, loss of a job, or financial loss. As previously mentioned, adults with ADHD also run a high risk of suffering from mental illness. Several studies have found that most adults with ADHD meet the criteria for at least one comorbid psychiatric diagnosis (e.g., [ 7, 17, 18].

Researchers studying the economic burden of adult ADHD point to increased costs for sick leave [ 19]. De Graaf et al. [ 20] found that workers with ADHD had an average of 8.4 excess sickness absence days per year, compared to otherwise similar respondents without ADHD. In a sibling comparison cost analysis, Daley et al. [ 21] found that adults with ADHD had an average of 34 sickness absence days per year, compared to an 8-day average among their siblings without ADHD. In a study on data from a large manufacturing firm, Kessler et al. [ 22] found that 20% of workers with ADHD had one or more sickness absence days in the past 30 days, compared to 10% of workers without ADHD.

In a study of ADHD outpatients aged 19 to 29 years, 38% received sickness absence recommendation, compared to 2.4% in the general population receiving that benefit [ 23]. All patients included in the study received specialized treatment for ADHD, yet many had a significantly impaired ability to work.

In one of the most comprehensive qualitative studies to date, Brod, Pohlman, et al. [ 28] conducted focus groups and interviews to study the general burden of illness for adults with ADHD. Work and career were important topics in all focus groups, with work requiring both coping skills and support. Among the identified obstacles at work were disorganization, inattention, and problems with authority.

Interviewing adults with ADHD between the ages of 21 and 38, Ek and Isaksson [ 29] found that work can be supportive, through structure and demands, if adapted to individual capacities. Participants appreciated rules and limits for what activities to perform at work, facilitating focus and realization. Participants also described how employment gave value to their lives and provided a social context. Similar results were found in a study by Goffer et al. [ 30]. In a sample of students, where many combined studies with working, participants described how work provided relatedness, a sense of belonging, and value beyond mere monetary compensation.

Studying experiences of young adults with ADHD and the role of context, Lasky et al. [ 31] report that for some, stressful and challenging work may alleviate symptoms, by forcing attention and keeping boredom at bay. Interviewing successful adults with ADHD specifically, Sedgwick et al. [ 32] identified several positive aspects of ADHD. While many aspects were relevant to people in general, a few were regarded as ADHD specific, including divergent thinking, hyper-focus, and nonconformist.

Interviewing a well-educated, high-income sample of older adults with ADHD, Brod, Schmitt, et al. [ 33] report that participants described accumulated negative ADHD effects on educational achievements, job performance, and subsequent financial status. Participants also described how the stress of ADHD exacerbated other stressors in their lives, with an aggregated negative effect on quality of life. Interviewing older adults with previously undiagnosed ADHD, Michielsen et al. [ 34] found participants to be hard workers, with some working too hard due to difficulties saying "no". Some specifically reported overstepping their physical boundaries, culminating in physical ailments due to stress.

Quantitative studies of occupational issues among adults with ADHD tell us much about the negative consequences of working with ADHD. While previous qualitative studies provide further insight into the experiences of working with ADHD, more research is needed on how adults with ADHD experience their working life. This includes specific occupational challenges, successful strategies for coping, and the relationship between work and mental health. This project aims to further study the general experience of working with ADHD, specifically explore stress and work-related mental illness among adults with ADHD, and identify needs in preventing these negative outcomes.

Methods

In-depth interviews with 20 adults with ADHD were conducted between May and July 2021.

Participants

Participants were recruited primarily in collaboration with a large Swedish ADHD patient interest group, Riksförbundet Attention. Information about the study was published on social media, together with a link to a website where interested individuals were invited to read more about the study. Terms and conditions were detailed on the website. Before recruitment, the study received ethics approval from the Swedish Ethical Review Authority (Diary number: 2021-01029). Participants were required to be 20-64 years old (Swedish definition of working age), have a diagnosis of ADHD, speak Swedish, work half-time or more, and have work experience equivalent to at least three years full-time. No compensation was awarded for participation. Provision of informed consent was required to submit a notice of interest, thus, written informed consent was obtained from all participants. With this notice, data were collected regarding age, gender, education level, occupational status, work experience, and ADHD diagnosis. Finally, participants submitted their email addresses. In a few days, 90 notices of interest were submitted, and the website was closed to new submissions. All participants were given a random identification code (e.g., 1a2b), and their contact information was stored separately from all other data. Thus, participation was pseudonymous.

Sampling

From the pool of notices of interests, 20 individuals were chosen purposefully and stratified to reach a heterogeneous sample concerning demographics. Half identified as women, half as men. Ages ranged from 23 to 60 years, education level ranged from high-school degrees to more than three years of university studies, and work experience ranged from 5 to 40 years. These individuals were contacted via email and invited to schedule an interview. If unavailable, or not responding, another individual of similar age and, if possible, the same gender was contacted. In total, 61 individuals were contacted before 20 interviews had been scheduled and conducted. Table 1 shows the characteristics of the final sample. As few men submitted notices of interest, the final sample was predominantly female.

Table 1 Participants' Characteristics

Data collection

Semi-structured interviews were conducted via telephone by authors M.O. and M.N. The interviews were recorded using digital audio recorders. All recordings were transcribed verbatim by the interviewers. Identifying information was substituted with generic analogs, e.g., "employer", "city", or "care provider".

An interview guide was used through all interviews (see Additional file 1). The guide was developed by the authors, based on previous research and topics relevant to the research aims. In the first part of the interview, topics included experiences of current and previous workplaces and jobs, how the ADHD diagnosis and/or symptoms of ADHD affected participants on the job, and experiences of support from colleagues, managers, family, friends, and professionals, including accommodations and resources in and around the workplace. In the second part of the interview, topics included how work may have affected participants' well-being, how the ADHD diagnosis and/or symptoms of ADHD may have influenced that relationship, and the current need for support and accommodation in and around the workplace. Finally, in preparation for an intended future study, participants were asked about their interest in, and attitudes toward, an internet-based psychological intervention targeting stress and work-related mental illness among professionals with ADHD.

Analysis

A conventional approach to qualitative content analysis was used to explore the content of the interviews [ 35]. The analysis was conducted by M.O. and M.N., under the supervision of A.R. Both M.O. and M.N. are licensed clinical psychologists, trained and experienced in the assessment and treatment of adult ADHD.

First, all transcripts were read to the letter. Quotes relevant to the research aims were highlighted and extracted, i.e., all quotes regarding work and explicit, implicit, or possible mental illness, including stress and potential stressors. Quotes regarding the intended future study were considered and included if the content also concerned the current research aims. The selection of quotes was continuously discussed between M.O. and M.N., with assistance from A.R. All quotes were then condensed into units of meaning, using the original wording of the participants. Throughout this process, some quotes were shortened, and some excluded, with respect to the research aims. Again, this included a continuous discussion between M.O. and M.N., with regular consultation of A.R. Finally, all units of meaning were coded inductively, as true as possible to the original wording of the participants.

Next, all codes from one interview were extracted, organized, and categorized by M.O. and M.N., individually. Similarities and differences in the results were discussed until consensus was reached. The final categories were compiled in a mind map, with their respective codes. Then, the remaining material was divided between M.O. and M.N. Codes from all interviews were separately extracted, organized, and categorized into mind maps. The result of each categorization was thoroughly reviewed in discussion between the coders until consensus was reached. Finally, the results from all interviews were reviewed collectively, to develop concluding themes. Categories from all interviews were gradually clustered, with close attention paid to maintaining internal homogeneity and external heterogeneity between the final themes [ 36].

Results

As presented in Fig. 1, the analysis yielded three themes that describe some of the challenges of working with ADHD: Working and living with ADHD, Needs, and Special abilities, with a total of eight subcategories.

Themes and Subcategories in Data

Working and living with ADHD

Topics related to working and living with ADHD, naturally, comprised large parts of the interviews. This includes experiences and consequences of working with symptoms of ADHD, before and after diagnosis, in different workplaces, in different stages of life, and the circumstances that may mitigate or aggravate existence.

Specific challenges

All participants described specific challenges related to working with ADHD, concerning symptoms and/or situations. Among the prominent symptoms were those commonly associated with ADHD, such as distractibility, forgetfulness, restlessness, impulsivity, and impatience. Also prominent were symptoms less typically associated with ADHD, such as emotional dysregulation. Many participants described a hypersensitivity to criticism and failure, and a general sensitivity to changes in mood and atmosphere in and around the workplace, negatively affecting work performance and psychological well-being:

The sample was heterogeneous regarding professions, and, as such, challenging situations varied between participants. Recurring, however, were monotone and repetitive tasks, which caused under-stimulation, boredom, and subsequent dejection. Another typical challenge were meetings. Problems with meetings included difficulties staying focused and keeping up with the discussion, trouble gathering one's thoughts while conversations derail, and stress building up as meetings go overtime:

Relationships and cooperation

A large majority of participants mentioned experiences of working alongside and together with other people, and how those encounters affected their experiences of working with ADHD. Prominent was the sense of other's, imagined or true, judgment of oneself. Some participants described coming across as lazy, ignorant, or incompetent, when dysexecutive. Others described repeatedly being perceived as too much or too straightforward. Many also recalled a history of faux pas in the workplace, as a result of tactlessness and indiscretion:

Negative consequences

Whether participants enjoyed their job, had a good relationship with colleagues, and felt support from management in their vocational aspirations, they all described indisputable negative consequences of ADHD, related to their work. These consequences included negative effects on family and recreation, loss of jobs, unemployment, and symptoms of mental illness. Most prominent among symptoms of mental illness were anxiety, stress, and exhaustion. Several participants described a working life marked by constant anxiety, with spikes in intensity related to work and life events:

A feeling of impending danger, unease, but you never know what for. It afflicts everything you're thinking about in that moment. (Participant D) It's not like you have anxiety for a moment and then you're good. It just lays there, like a tone, disturbing. (Participant E)

Regarding stress, many participants described a general sensitivity to stress and feelings of being easily overwhelmed. This was related to feelings of not doing good enough, not keeping up with tasks, and not staying on top of things. For many, this was mediated by symptoms of inattention, such as distractibility and forgetfulness. Some compensated by being exceedingly thorough or working overtime, further depleting their energy reserve. Several participants described being "weathered" by years of stressful work and repeated relapses of exhaustion.

Just as work affected their mental health, many participants also described how their mental health affected their work, positively and negatively:

Other aggravating circumstances

Many participants described circumstances outside work that aggravated the challenges of working with ADHD. Most pronounced were trials related to family and parenthood. Several participants mentioned having children with special needs of their own, and the challenges of working while accommodating them. Not knowing if your child will be able to get out of bed in the morning when you have an important meeting, managing appointments with pediatricians, and always being on-call if something happens at school, introduces another level of strain. A number of participants described the work-family balance as "unmanageable", fighting to uphold a low-arousal approach when returning home from work, battered.

Needs

In contrast to specific challenges, negative consequences, and aggravating circumstances, all participants shared thoughts about their current needs, as well as their experiences of successful and unsuccessful interventions, accommodations, and collegial/managerial support.

Planning, prioritization, organization, and structure

Many participants experienced great deficiencies in organization and structure at their workplaces, encumbering not only themselves and fellow coworkers with ADHD, but most, if not all, employees. Some described lacking job descriptions and not knowing what to do, leading to a loss of time and energy:

Participants with experiences of working with clear-cut job descriptions, explicit routines, and consistent implementation, on the other hand, recall thriving and outperforming colleagues. For some, the benefits of structure at work carried over to personal life:

Support, interventions, accommodations, and aids

Experiences of managerial support varied greatly between interviews. While many participants described supervisors and managers as being supportive, the responsibility for designing and implementing accommodations was often appointed the individual:

While the experiences of managerial support varied, many participants described supervisors and managers as important or crucial in their experience of working. Certain weight was given to the general attitude of superiors regarding support, and several participants described how a perceived lack of responsiveness could be considerably discouraging. Some participants had greater success working with colleagues to adjust routines and processes in the workplace. For example, some participants had agreements with team members regarding the distribution of tasks. Others found great support in colleagues with similar or other special needs of their own.

Although a small number of participants used assistive technology, such as visual timers and screen readers, very few had been in contact with an occupational therapist. Most participants, however, used mobile and computer applications to organize, plan, and prioritize their work, including intelligent to-do lists, reminders, calendars, and timers. In all cases, the selection and implementation of such applications were done by participants themselves, without professional assistance:

Regarding healthcare support, many participants described significant improvements in functioning at work following pharmacological treatment of ADHD symptoms. Experiences of other interventions in routine psychiatric care, however, were scarce, and generally disappointing. For example, some participants recalled experiencing a lack of knowledge among healthcare providers, beyond basic diagnostic criteria for ADHD. Several participants desired interventions catered to relatively functional adults, focused more on executive function rather than basic organization skills.

Openness, understanding, and acceptance

Many participants described how coming to terms with their ADHD-related deficits, often through diagnosis and subsequent (self-)education, enabled them to work constructively with their challenges at work. For some, it also facilitated self-compassion. Experiences of disclosing the diagnosis at work, however, varied. Some shared it confidentially with select colleagues, some only with their closest supervisor, and some spoke openly about it. Other participants were vocal about specific deficits, symptoms, and challenges, rather than disclosing their diagnosis:

Responses to disclosure also varied. Some participants experienced significant relief and improved relationships with coworkers. Others recall supervisors and managers not knowing how to deal with the information, and a general lack of understanding of the challenges of adult ADHD. Many participants described a dilemma surrounding disclosure. On the one hand, disclosure may facilitate accommodation, while raising awareness. On the other hand, a diagnosis should not be a prerequisite for accommodation, and the actual informational value of a diagnosis is limited. Several participants also feared discrimination or bias.

Special abilities

While there was a clear consensus among participants that advantages of ADHD symptoms or an ADHD diagnosis were slim to none, nearly all participants described acquired strategies, personal strengths, and unique qualities that significantly improved function and sometimes alleviated burden at work.

Strategies

Many participants employed formal analysis and rigorous problem solving to understand and deal with challenging situations and circumstances at work. Some described performing it on the spot when faced with a challenge, while others made notes of situations during the day to later analyze and try to remedy:

Together, the participants described a wealth of solutions to challenges at work. Beyond positive effects of the beforementioned analyses, efficient approaches included stimulus control, frequent breaks, and intentional gaps in the agenda. Many participants also mentioned successful preventive strategies, including engagement in exercise, outdoor life, and other valuable pastimes.

Strengths and qualities

Many participants described a certain creativity and quick-wittedness. This would be expressed in situations such as brainstorming meetings and problem solving, as well as in social settings. For some participants, these traits would go hand in hand with a perceived above-average ability to think outside the box and come up with effective solutions when colleagues and partners were stuck:

However, many participants described their wealth of ideas as both a blessing and a curse, as concurrent impulsivity could lead one to express ideas, including possibly controversial ones, in situations where one would be better off keeping quiet:

Some participants described a positive ability to hyperfocus, being able to direct all their attention to the task, activity, or client at hand, or being able to quickly assimilate crucial information on a topic. A few participants also described certain positive effects of hypersensitivity, such as being able to instantly pick up on changes in mood, attitude, or atmosphere in important meetings, and being able to better empathize with clients.

Discussion

This study explored self-reported ADHD-specific experiences of working with ADHD, including work-related stress and mental illness. Qualitative content analysis of transcripts from 20 interviews revealed three themes of common experiences. The results expand our knowledge on how ADHD adults experience their working life, including specific occupational challenges, experiences of previous interventions, current needs, special abilities, and strategies for coping.

Concerning the consequences of living and working with ADHD, several participants described careers characterized by persistent anxiety, stress, and relapses of exhaustion. As previously shown, the association between ADHD, stress, and mental illness, is well documented in quantitative studies. The results of the current study expand our understanding of this relationship, identifying feelings of being overwhelmed, not doing good enough, not keeping up with tasks, and not staying on top of things, as related to perceived stress and overload.

Regarding interventions, accommodations, and collegial support, many participants described negative effects of inadequate organization and structure at their workplaces, while some described thriving under better managerial circumstances. The importance of clarity in communication between managers and employees with ADHD has been emphasized by ADHD experts (e.g., [ 41]) and management scholars (e.g., [ 42]) alike. These results are also reminiscent of the support through demands and structure described by Ek and Isaksson [ 29]. The results of the current study further support the notion that managerial and organizational factors play a vital role in the well-being and prosperity of professionals with ADHD.

While many participants described a significant improvement in working ability after pharmacological treatment of ADHD symptoms, experiences of any further support in healthcare were few and unsatisfactory. While the effectiveness of medications for adult ADHD is well documented (e.g., [ 43]), national and international guidelines consistently advise multimodal and multidisciplinary treatment (e.g., [ 44, 45, 46, 47]). The results from this study indicate deficiencies in both the provision and the acceptability of non-pharmacological treatment for adult ADHD, among working adults. This includes occupational therapy, as very few participants in the current study had ever been in contact with an occupational therapist, despite consensus among ADHD experts regarding the importance of occupational therapists in ADHD interventions [ 48].

For many participants, circumstances outside work, including family and parental obligations, aggravated the challenges of working with ADHD. However, nearly all participants also described strategies, strengths, and qualities that improved function and alleviated burden. For many participants, formal analyses and problem solving, combined with creativity and quick-wittedness, was a recipe for progress at work. While planful problem solving is a challenge for some with ADHD, these results are in line with the adult-ADHD tendency to positively reappraise current situations and "continually assess, re-assess, compensate and adapt" ([ 49] p.814). The merit of creativity and quick-wittedness is also in line with the divergent thinking described by Sedgwick et al. [ 32].

In all qualitative research, researchers must take into consideration their pre-understanding, i.e., their knowledge of the subject and their familiarity with the context [ 36]. In this study, the authors responsible for conducting the interviews and analyzing data were clinical psychologists experienced in the assessment and treatment of adult ADHD, both having met many ADHD patients struggling with stress and work-related mental illness. Pre-understandings from this clinical work may imply a risk for over-interpretation and confirmation bias regarding the relationship between ADHD (symptoms) and work, and the relationship between work and mental illness. However, it may also guide the evaluation and linking of data, including the appraisal of the novelty and relevance of the findings [ 54]. In the current analysis, great care was also taken to use and stay true to the original wording of the participants in condensation and coding, i.e., not reading or looking for something between the lines.

The limitations of the current study include the recruitment and sampling process. In the information about the study, the aim of studying work-related stress and mental illness was explicit. It is possible that this framing attracted certain interest from adults with ADHD and a more extensive history of stress and work-related mental illness. While this was of interest in the study, perhaps the sample would have been more heterogeneous had the initial information been less specific. The sample did, however, have an appropriate range regarding age, work experience, education level, and profession.

Future studies may well consider ethnographic methods to further study the challenges of working with ADHD. For example, researchers may consider observing adults with ADHD in the working environment, to gain further knowledge of specific settings and situations that prove challenging. Future research could also focus on the managerial partners in organizations, e.g., experiences of supervising employees with ADHD and managing the challenges and consequences of ADHD in the workplace.

Conclusions

The results of the current study suggest further knowledge about the challenges of working with ADHD is needed in workplaces; where organizational support is lacking, much in terms of accommodations and aids is up to the employee, and the disclosure of diagnoses may be associated with great dilemma. The results of the current study may also inform other social partners, e.g., labor organizations and work environment authorities, and advise regulations, recommendations, and legislation. More knowledge is also needed in health care, where, other than medications, common interventions in routine psychiatric care seem to generally disappoint working adults with ADHD. While psychoeducational interventions on ADHD in general may be provided, participants in the current study asked for interventions catered to relatively high-functioning patients, and the specific challenges they may be facing.

Availability of data and materials

Data from the current study are not publicly available due to them containing information that could compromise research participant privacy. Participants neither consented to data being made available. However, data is archived for at least ten years in compliance with Stockholm University regulations. Requests for any data should be addressed to the corresponding author.

Abbreviations

ADHD:

Attention deficit hyperactivity disorder

References

Download references

Acknowledgements

The authors would like to thank Riksförbundet Attention for help in recruitment to the study.

Funding

This study was made possible through a generous grant from Region Stockholm (FoUI-941466). The funder had no role in the study design, data collection and analysis, decision to publish, or preparation of the manuscript. Open access funding provided by Stockholm University.

Author information

Authors and Affiliations

1. Department of Psychology, Stockholm University, 106 91, Stockholm, Sweden

Martin Oscarsson, Per Carlbring & Fredrik Jönsson

2. Department of Psychology, Uppsala University, Uppsala, Sweden

Martina Nelson & Alexander Rozental

3. Centre for Psychiatry Research, Department of Clinical Neuroscience, Karolinska Institutet, & Stockholm Health Care Services, Stockholm, Sweden

Alexander Rozental & Ylva Ginsberg

Contributions

M.O. and A.R. initiated the idea for the study. Funding was secured by M.O., A.R, Y.G., P.C., and F.J., with F.J. as the main applicant and principal investigator for the project. The purpose, research aims, and design were further conceptualized by M.N., Y.G., P.C., and F.J. Participants were recruited by M.O. and Y.G. Interviews and analysis were conducted by M.O. and M.N., under supervision by A.R. The manuscript was written by M.O. in consultation with M.N. Important revisions were suggested by A.R., Y.G. P.C., and F.J. The final manuscript was approved by all authors.

Authors' information

Not applicable.

Corresponding author

Correspondence to Martin Oscarsson.

Ethics declarations

Ethics approval and consent to participate

Before recruitment started, the study received ethics approval from the Swedish Ethical Review Authority (Diary number: 2021-01029). Provision of informed consent was required to submit a notice of interest of participation, thus, written informed consent was obtained from all participants. All methods were carried out in accordance with relevant guidelines and regulations.

Consent for publication

Not applicable.

Competing interests

In the past five years, Y.G. has participated in pharmacoepidemiological research on ADHD medication sponsored by Shire (a Takeda company) and received royalties from Studentlitteratur for a book concerning ADHD. M.N. receives royalties from Natur & Kultur for two books concerning ADHD. The remaining authors declare that they have no competing interests.

Additional information

Publisher's Note

Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.

Supplementary Information

Rights and permissions

Open Access This article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article's Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article's Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by/4.0/. The Creative Commons Public Domain Dedication waiver ( http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated in a credit line to the data.
Reprints and permissions

About this article

Cite this article

Oscarsson, M., Nelson, M., Rozental, A. et al. Stress and work-related mental illness among working adults with ADHD: a qualitative study. BMC Psychiatry 22, 751 (2022). https://doi.org/10.1186/s12888-022-04409-w
Download citation

Received:

Accepted:

Published:

DOI: https://doi.org/10.1186/s12888-022-04409-w

Keywords

# data[].attributes.attachment_link.title
Stress and work-related mental illness among working adults with ADHD: a qualitative study - BMC Psychiatry

# data[].attributes.attachment_link.description
Background Though many adults with ADHD underperform professionally, are more stressed, and have more days of sickness absence compared to adults without ADHD, few studies have explored the experience of working as an adult with ADHD. This study explores the general experience of working with ADHD, including stress and work-related mental illness.

# data[].attributes.headline
A systematic review of interventions to support adults with ADHD at work: Implications from the paucity of context-specific research for theory and practice.  

# data[].attributes.subject
A systematic review of interventions to support adults with ADHD at work: Implications from the paucity of context-specific research for theory and practice.  

# data[].attributes.attachment_link.readable_text
Front Psychol. 2022; 13: 893469.

Abstract

Attention Deficit Hyperactivity Disorder (ADHD) is estimated to affect 3.5% of the global workforce. Despite the high prevalence rate, little is known about how best to support adults with ADHD (ADHDers) at work. Relevant research is dispersed across different disciplines such as medicine, health studies and psychology. Therefore, it is important to synthesize interventions aimed at ADHDers to examine what learning can be gleaned for effective workplace support. We conducted a systematic review of relevant interventions framed by realist evaluation and the Context-Intervention-Mechanism-Outcome classification to identify key mechanisms of effectiveness for workplace interventions. We searched 10 databases including a range of journals from medical science to business management applying predetermined inclusion criteria and quality appraisal through a risk of bias assessment for quantitative and qualitative methods. We synthesized 143 studies with realist evaluation. Most studies evaluated the effectiveness of pharmacological interventions highlighting the dominance of the medical approach to supporting ADHDers. Key mechanisms of effectiveness were identified from psychosocial interventions including group therapy, involvement of people in the ADHDers network, and the importance of the client-patient relationship. Overall, there is limited research that examines the effectiveness of workplace interventions for ADHDers. Furthermore, much of the existing research evaluates pharmacological interventions which is difficult to transfer to the workplace context. It is recommended that future research and practice consider the key mechanisms identified in this review when designing interventions as well as barriers to accessing support such as disclosure and self-awareness.

Keywords: attention deficit hyperactivity disorder, ADHD, workplace, systematic review, interventions, treatment, work

Introduction

Attention deficit hyperactivity disorder (ADHD) is a multidimensional neurodevelopmental condition that has only recently been considered to impact the lifespan (Caye et al., 2016). In the UK, ADHD is formally diagnosed by a psychiatrist where marker symptoms are inattention and hyperactivity/impulsivity (Tatlow-Golden et al., 2016) in varied constellations. Other symptoms experienced are difficulties with emotional regulation and challenges with social interactions (Pitts et al., 2015; Corbisiero et al., 2017). The conceptualization of ADHD is debated and often pathologized in line with the core symptoms. However, recent conceptualisations consider ADHD to be part of neurodiversity and conceptualized through a biopsychosocial model shifting the focus to understanding difference (Doyle, 2020) rather than framing ADHD as a burden (Asherson et al., 2012). Regardless of conceptualization of ADHD, the range of symptoms associated with the condition impacts on all functional domains from personal life to the workplace; for a formal diagnosis these need to be present in more than one life domain (Davidson, 2008; American Psychiatric Association, 2013). The estimated 3.5% of the global workforce who are likely to have ADHD (de Graaf et al., 2008) are likely to report issues with work performance, difficulties in job retention, under- and unemployment, and negative work-related well-being (Küpper et al., 2012; Adamou et al., 2013; Painter et al., 2017). Therefore, it is imperative that adequate workplace support is in place to mitigate such likely negative outcomes (Adamou et al., 2013).

The National Institute for Health Care Excellence ( 2019) guidelines that clinicians apply when recommending how to manage ADHD state that medications (referred to in the present review as pharmacological interventions) are the first line of treatment once environmental modifications, through reasonable adjustments, have been implemented and reviewed. Non-pharmacological (also referred to as psychosocial) interventions are only recommended if the ADHDer does not want to use medication, has difficulty adhering to medication, or found it ineffective (National Institute for Health Care Excellence, 2019). Gaining and sustaining good work is imperative for well-being for everyone, including neurominority populations. However, little is known about what workplace environmental modifications are effective and whether pharmacological or psychosocial interventions are at all effective in workplace contexts to enhance work outcomes, including individual performance. Thus far, no comprehensive review of interventions for adult ADHD has focused on work-related studies or scrutinized the organizational/management literature (De Crescenzo et al., 2017; Fullen et al., 2020). Given habitual challenges experienced by ADHDers regarding effective functioning and thriving careers, such as concentration challenges being interpreted as a sign of underperformance, rather than supported through adjustments, it is important to revisit the existing literature to identify studies that examine relevant interventions to recognize any effective mechanisms transferable to a work context. Somewhat contrary to the broad NICE guidance, existing reviews have suggested psychosocial interventions as more effective than pharmacological when addressing functional outcomes such as quality of life or co-occurring challenges associated with ADHD such as anxiety or depression (Linderkamp and Lauth, 2011; Lopez et al., 2018), and thus may be more pertinent and appropriate in a work context.

Objectives

Using realist synthesis and evaluation, the present review aims to synthesize, (a) the respective types of support/ interventions available to adult ADHDers and (b) the evidence for their effectiveness in workplace contexts or on any work-relevant outcomes.

Review approach

As it was our aim to take a cross disciplinary review including organizational and management literature as well as complex interventions derived from clinical and health context, we took a realist evaluative approach (Pawson and Tilley, 1997). With foundations in programme theory (identifying the underlying theory about why an intervention is effective), realist evaluation emphasizes the importance of context where researchers are advised to focus on "what works for whom, in what circumstances, in what respects and over which duration" (p. 15) rather than surmising whether the type of intervention is effective or not (Pawson, 2013). Drawing on the premise that underlying theory provides the answers to why and how interventions work in some circumstances, but not in others (Astbury and Leeuw, 2010) we applied the CIMO-logic (Denyer et al., 2008). The context (C) is defined as the environment or human factors, the intervention (I) as specified in the research question, the mechanisms (M) created by the intervention as the key components for its efficacy, and the outcomes (O) ranging from performance to cost reduction (Denyer et al., 2008) also encompassing potential interactions between respective units of analysis (for an example see Doyle and McDowall, 2019) throughout the review process including the review question, data extraction, quality assessment, and interpretation of findings.

Methods

Expert panel, review process and review question

In line with best practice guidelines and prior research (Gough et al., 2012; Beauséjour et al., 2013), the current review incorporated an expert panel consultation ( N = 4) at multiple points in the review process (see Figure 1 ). The panel included practitioners working in employment support for ADHDers, an academic whose research focuses on support for ADHDers, and a psychoanalyst who works therapeutically with ADHDers. Two members of the expert panel disclosed that they had received a diagnosis of ADHD and hence took the dual role of potential 'service users' as recommended in reviews where the public may be impacted by the findings (Gough et al., 2012).

The experts were invited to answer nine review scoping questions including their views on definitions for ADHD, the most effective intervention for ADHDers is and comment on and if necessary suggest amends for the protocol review questions. Their responses were analyzed using content analysis to identify common themes as summarized in Table 1 (Krippendorff, 2004). Adult ADHD was conceptualized by the panel to encompass multiple domains and contexts which affect the life span. The panel stressed difficulties beyond the core symptoms such as working memory, self-regulation, and the high prevalence of co-occurrences. Strengths were also highlighted in some panel members' answers including enthusiasm, passion, and loyalty. Regarding the most effective intervention, psychoeducation and coaching were the most common response, emphasizing that these required delivery from a trained specialist working with ADHDers. The experts identified broad research gaps including interventions such as diet and exercise, managing specific behaviors and relationships, and the impact of diagnosis and stigma on the individual. Finally, workplace related research was identified as a priority for academia in the next 5 years given the paucity of primary evidence.

Table 1

Definition of adult ADHD

Effective interventions

Efficacy of psychological interventions

Research gaps

* Lifelong
* Working memory
* Concentration
* Strengths- enthusiasm, passion, loyalty, novelty.
* Invisible disability
* Self-regulation
* Affects multiple domains/ cross-contextual
* Co-morbid

* Coaching- the coach must be experienced with ADHD
* Technology
* Exercise
* Medication, initially rather than long-term and
* Psychoeducation
* Interventions involving the support network around the person
* Separate treatment for co-morbidities

* Coaching is effective in boosting work-related performance
* Group sessions

* Diet and exercise
* Managing hoarding and compulsive behaviors
* Improving awareness among public-body decision-makers and GPs
* ADHD presentation in females
* ADHD in relationships
* Workplace support
* Stigma and marginalization

* Targeted at organizational challenges- developing strategies in a job that matches interests

* Success narratives
* Impact of diagnosis on career success guidelines

Review questions

The panel agreed our review questions and scope; following some discussion we agreed to keep the focus broad and international notwithstanding differences in legislative frameworks which may impact on how any interventions are delivered. Guided by the CIMO framework, the final overarching review questions were: Which interventions, documented in the literature, aim to support adult ADHDers?

(a) In which contexts have any studies been conducted,

(b) How can we classify types of intervention,

(c) What are the mechanisms in the interventions, and

(d) What are the outcomes addressed?

Study design

Our inclusion criteria stipulated that participants in primary studies had to be over the age of 18 years and received a formal ADHD diagnosis using the DSM 3, 4, or 5 criteria in the treatment/intervention group prior or at the beginning of the intervention from a clinical practitioner. The intervention had to meet the following definition: "...activities, techniques, or strategies that target biological, behavioral, cognitive, emotional, interpersonal, social, or environmental factors with the aim of improving health functioning and well-being" (Institute of Medicine of the National Academies, 2015, p. 31).

Furthermore, the interventions had to be preventative or therapeutic and not be purely diagnostic or prognostic (Santos et al., 2007) including combinations of pharmacological and psychological treatments. Interventions based on altered brain stimulation were excluded because (1) they tend to have a diagnostic purpose, and (2) they are not currently recommended for supporting adult ADHD (Kooij et al., 2010; National Institute for Health Care Excellence, 2019). We excluded pilots, protocols, systematic reviews and meta-analyses because of our focus on specific primary interventions. The outcomes or findings from the study had to be measurable and defined as an "expected result" consistent with the PICO framework (Santos et al., 2007, p. 510). We excluded interventions that did not assess the "expected result" was excluded, for example, interventions solely assessing adverse effects of the drug treatments as well as studies solely assessing outcomes non-transferable to the workplace such as physiological changes. Qualitative primary studies were included where relevant as they are suited to eliciting process focused evidence ("how"). Finally, no date restriction was placed on the searches, studies could be published or unpublished but had to be written or translated into the English language.

Systematic review protocol

Our review protocol was registered with PROSPERO, an international register of prospective systematic reviews (registration number CRD42018092237).

Search strategy

We searched databases from a variety of disciplines, including organizational and management journals and those specific to ADHD as shown in Table 2 . Our search terms were agreed by dividing the research question into its individual elements with consultation from a specialist subject librarian and are shown in Table 3 (Petticrew and Roberts, 2006).

Table 2

Medical, science, psychology and business databases

ADHD specific journals

Academic search complete

ADHD Attention Deficit and Hyperactivity Disorders

Business source premier

Journal of Attention Disorders

Criminal justice abstracts with full text

Library, information science and technology abstracts

PsycARTICLES

PsycINFO

MEDLINE

ProQuest Business collection

Scopus

Web of science

Table 3

Element

Variations

Adult ADHD

Adult ADHD, Adult ADD, Adult Attention Deficit Hyperactivity Disorder, Adult Attention Deficit Disorder, adults with ADHD, adults with attention deficit hyperactivity disorder, adults with ADD, adults with attention deficit disorder

Interventions

Intervent*, treat*, manag*, program*, counsel*, coach*, therapy, trial, train*

Data extraction

We undertook an inductive open-coding approach during the data extraction (Oliver and Sutcliffe, 2012) including some predetermined categories such as study design and participant gender ratios. During extraction we identified additional categories including the intention-to-treat analysis (defined as a type of analysis that includes data from participants who have dropped out in the latter stages) and placebo-controlled interventions. We developed further criteria for extracting information about study quality including ratings according to whether primary studies had answered their research question (Jarde et al., 2012).

Results

Study selection and characteristics

EPPI Reviewer was used to manage the data and record the decision making (Thomas et al., 2020). The first step involved screening the study titles and removing any duplicates. The lead author screened the title and abstracts against the inclusion criteria. A member of the review team then screened 5% of the title and abstracts and any disagreements were discussed and resolved. Following a percentage agreement of 97%, Cohen's kappa was calculated across the two reviewers and they had a score of κ = 0.86 indicating strong agreement (McHugh, 2012). The full text versions were retrieved and screened accordingly. If the full texts were not available, the reviewer emailed the author to request a copy. Figure 2 displays the PRISMA figure of the screening and selection process (Page et al., 2021).

Findings

Our findings are presented in two parts. Part one provides a systematic map of the studies with their representative characteristics to give an overview of the interventions documented in the literature and the field in line with the aim of the review and the overarching review question. The second part contains a realist evaluative synthesis of the interventions discussing the contexts in which they have been studied, the mechanisms in the interventions, and the outcomes addressed.

Systematic mapping

We synthesized 143 articles. Each study is listed in Table 4 ( Supplementary material) with its representative (a) year of publication, (b) intervention type, (c) country, (d) total sample, (e) gender ratio, (f) design, and (g) length of follow-up in weeks. The studies were published from 1996 to 2021 as presented in Figure 3 . There are two peaks in publications that reflect prior systematic review findings and represent the contextual shifts in understanding and diagnosis of adult ADHD. In 2008, the National Institute of Clinical Excellence (NICE) guidelines were released which unlike previous versions, included methods to support adult ADHDers. The second and most significant peak in publications is after 2013 where the upgraded criteria for ADHDers was published in the Diagnostic Statistical Manual (DSM) version five (2013), which was the first time ADHD symptoms and experiences in adults were noted as part of the diagnostic criteria. Then a third peak occurred in 2019, when the NICE guidelines were updated to highlight the importance of environmental modifications and pharmacological intervention rather than previously combined pharmacological and psychosocial interventions.

A total of 22,132 participants were involved in the studies. The mean sample per study was 155. Studies had typically high levels of drop-out rates at follow up, ranging from 0 to 90% (Johnson et al., 2010). Follow-up length varied greatly, ranging from the same day to 4 years. The mean follow-up length was 16 weeks. Follow-up length was further classified into long-term and short-term with long term being 6 months or more (23% of studies) and short term <6 months (all other studies).

From the 143 studies, 60.8% were evaluating the efficacy of pharmacological interventions, 28.7% were classified as psychosocial interventions and the remaining 10.5% evaluated the efficacy of pharmacological combined with psychosocial interventions. We categorized study designs, similarly to a prior systematic review (Bower et al., 2001), into randomized control trials (RCT; k = 101), controlled before and after (CBA; includes control group; k = 14), and simple before and after (SBA; no control group; k = 28).

Realist synthesis

How can we classify types of intervention?

We classified interventions broadly into three groups depending on the underpinning theories and disciplines in which they were developed. The understanding that ADHD is a neurological imbalance in the brain is dominant in medical disciplines that argue the imbalance can be targeted by specific drugs and forms the first classification of pharmacological interventions (Durston, 2003). We based the second classification, psychosocial interventions, on theorisations that ADHD can be treated through psychological support (Young and Amarasinghe, 2010), and the final classification was entitled combination interventions which included studies where a multidisciplinary approach combining both pharmacological and psychosocial interventions is deemed most effective. Table 4 outlines our classifications and their representative underpinning theory and offers a breakdown of the sub-classifications of the interventions.

Most studies evaluated pharmacological interventions, assessing the efficacy of the three common drug treatments used to treat adult ADHD; Methylphenidate (MPH), Atomoxetine (ATX) and Lisdexamfetamine dimesylate (LDX) ( k = 87). Pharmacological interventions can be further categorized according to their drug type as stimulants or anti-depressants. Caye et al. ( 2018) explain that psychostimulants such as Methylphenidate and Amphetamines are the first line of treatment for ADHD because they are the most researched. Second line treatments involve Atomoxetine and anti-depressants that are often prescribed if psychostimulants are contraindicated or not tolerated or when co-occurrence is present, especially in cases of ADHD and Bipolar Disorder, any substance abuse or Tourette's Syndrome (Caye et al., 2018).

A wide range of psychosocial interventions provided the basis for over a quarter (29%) of the studies which we further classified according to the theories forming the basis of the therapies including cognitive behavioral therapy, mindfulness, attention/cognition training, skills training and/or coaching, and alternative therapies.

The remaining 15 studies combined pharmacological and psychosocial interventions. Most of these studies were stimulant treatment combined with cognitive behavioral therapy ( k = 9). Other psychosocial therapies combined with medication were mindfulness based cognitive therapy, group psychotherapy, and problem-focused therapy. One study advanced on the traditional two group comparison by comparing individual counseling to group psychotherapy in pharmacologically treated participants aiming to explore the most effective psychosocial treatment (Philipsen et al., 2007).

The group

We classified the interventions classified by mode of delivery. Of the 143 studies synthesized, 21 were delivered to a group or involved a combination of group and individual delivery. All 21 studies were classified as psychosocial or a combination of pharmacological and psychosocial. Of the 21 studies, 20 were classified as effective, 12 were conducted in European countries with 12 being conducted in universities, research centers or university hospitals. Group interventions are argued to be beneficial for sharing lived experiences, coping strategies, increasing feelings of belongingness and knowledge about ADHD (Bramham et al., 2009; Jackson et al., 2014; Fullen et al., 2020). Learning in a group also increases self-efficacy through higher levels of hope and motivation (Bramham et al., 2009; Tian et al., 2018). However, only six studies directly assessed outcomes relating to self-esteem or efficacy with one study additionally measuring social functioning. Therefore, it is difficult to compare the effectiveness of group vs. individual interventions because the theorized benefits are broad and not consistently measured.

Involvement of others

Group interventions tended to include individuals from the ADHDers support network as part of the intervention. Including significant others during the intervention is arguably effective and linked to psychoeducation whereby the ADHDer and their partners or family is empowered with knowledge about ADHD and how to better support it (Lukens and McFarlane, 2004). So far, research examining the efficacy of including family members in interventions for ADHD has focused on children and adolescents (Kaslow et al., 2012). Only five interventions in the present review involved someone in the delivery of the intervention that was not the clinician or individual with ADHD.

Of the five studies, four included the ADHDer's significant other or family member (Virta et al., 2008; Hirvikoski et al., 2011, 2017; LaLonde et al., 2013). The final study included a "support person" or "coach" for help with organizational tasks, and if the ADHDer did not have a support person from their own social network, an undergraduate student was allocated to them to adopt the support person role (Stevenson et al., 2002). All studies reported positive findings with improvements in outcomes beyond reducing symptoms like employment, maintaining relationships, organization skills, self-esteem, and knowledge about ADHD. In short, involving the support network around the ADHDer has marked effects on all outcomes emphasizing that an encouraging and supportive environment can increase the impact of an intervention.

In which contexts have the studies been conducted?

Contexts are defined as environmental factors that affect behavior change (Denyer et al., 2008). These contextual factors can be separated into four layers: the infrastructural system, the institutional setting, interpersonal relationships and the individual themselves (Pawson and Tilley, 1997). We mapped the 143 included studies onto the four areas with referrals being infrastructural system, location as an institutional setting, clinician-patient relationship as part of the interpersonal relationships and lastly, co-occurring at the individual layer.

Referrals and dropout

From the 143 studies 90 were outpatient referrals which means that the adults had received a diagnosis and were immediately referred by the psychiatrist for their first set of treatment at a specialist center or clinic (Kooij et al., 2010). Another method of recruitment was to advertise the intervention and remunerate participants with a formal diagnosis ( k = 6). These two methods of recruitment attract and include participants who are already aware that they may have ADHD or have recently been diagnosed. Pawson ( 2013) suggests that with medication it is difficult to pinpoint the exact moment in which the intervention began, which is particularly true with outpatient referrals as basic knowledge or understanding of ADHD may exist prior to the referral for treatment. As a result of going through the diagnostic process, some level of psychoeducation, researching and learning about ADHD, might have already happened prior to medical treatment. Consequently, it is unclear whether the intervention began at the point in which the ADHDer began to learn about ADHD or at the point medication is initiated. This level of self-awareness and knowledge is difficult to measure and is likely to differ greatly between individuals. With an increase in easily available information like self-help and guidance online, it is important to consider how potential misinformation or accurate information may influence how different interventions are perceived before interventions begin.

Dropout rates varied greatly across the studies. Adherence is a central part of assessing the efficacy of an intervention (Horwitz and Horwitz, 1993). In pharmacological studies, adherence is measured through self-report during follow up sessions recording whether the participant has taken the medication or not. In psychosocial interventions, it is typically assessed by attendance. A review of medical adherence in children and adult ADHDers found non-adherence rates that ranged from 13.2 to 64% but concluded that there is minimal research addressing reasons for non-adherence in adults (Adler and Nierenberg, 2015). Qualitative research has identified forgetfulness, a challenge for ADHDers, and lack of guidance from clinicians as potential barriers to medication treatment adherence (Matheson et al., 2013). Therefore, it important for future research and practice to consider adherence as an influential factor in the efficacy of pharmacological interventions and identify and remove any potential barriers.

Location

The most common settings for pharmacological studies were outpatient clinics or multi-center clinics in North America ( k = 47). The majority of participants had been referred to the clinic, received a formal diagnosis and then received a treatment. Assessing the effectiveness of pharmaceutical interventions across multiple clinics not only provides researchers and clinicians with information about the impact of the drug in multiple countries, but also provides an indication of the prevalence of ADHD across cultures (Polanczyk et al., 2007; Wang et al., 2017). Research centers and university settings ( k = 24) were more likely to study the effectiveness of psychosocial interventions, but unlike common critiques of a student sample and the lack of ecological validity, only two of these studies recruited student samples indicating good generalisability (Ward, 1993).

The clinician-patient relationship

Prior research has drawn attention to the significance of the patient and clinician relationship as well as healthcare outcomes (Kelley et al., 2014). As a potential mechanism, it is argued that the better the quality of the relationship, the quicker the recovery and the higher the rate of adherence (Thompson and Mccabe, 2012). The relationship between the clinician-patient is often layered and dynamic making it difficult to directly assess or compare between studies (Street et al., 2009). Key components of an effective relationship are similar in medical and educational settings with research suggesting the following: good management of emotion, high patient or coachee knowledge of their own condition, client/coachee centered approaches and good communication with shared understanding (Street et al., 2009; Jackson et al., 2014; Kelley et al., 2014; Lai and McDowall, 2014). Many of the 143 included studies relied on clinician ratings of symptoms and rarely included the patient. In addition, nearly all the studies had no means of measuring the impact of the clinician/patient relationship with two measuring patient experience directly. In context, as many of the studies were in outpatient clinics, the initial appointment for the treatment was most likely the first point of contact after receiving a diagnosis for a large proportion of the ADHDers, enhancing the importance of a positive and meaningful interaction. Although no measures or understandings were assessed in these studies. We therefore identify the clinician-patient relationship as potentially influential and recommend further investigation.

Co-occurrence

As a diagnosis, ADHD is rarely present without co-occurrences, clinicians suggest that co-occurrence with depression and anxiety is particularly prevalent due to the experiences of failure, lack of support, and challenges with regulating emotion (Jensen et al., 1997). In experimental study designs, co-occurrence is considered a confounding variable because it is difficult to isolate any beneficial effects of an intervention to a specific condition (Fortin et al., 2006). Consequently, most studies excluded co-occurrences as part of their criteria ( k = 135), whereas others deliberately addressed ADHD with co-occurrences like social anxiety disorder or substance use disorder ( k = 8). In contrast, there is an argument as to whether removing or excluding participants with co-occurring conditions lessens the external validity because they provide an unrealistic view of ADHD (Fortin et al., 2006).

What are the mechanisms in the interventions?

Mechanisms can be defined as the processes or underpinning methods in which the intervention operates in a specific context to produce a specific outcome that can be triggered in some contexts and not in others (Denyer et al., 2008; Dalkin et al., 2015). We understand mechanisms as the fundamental processes in which interventions are expected to be effective, relating them to the disciplines in which the interventions were developed and theorized, for example, brain chemistry, cognition, and psychoeducation (Denyer et al., 2008).

Brain chemistry

A large proportion of the studies were pharmacological in nature. From our realist synthesis and evidence-based medicine perspective, randomized controlled drug interventions are the gold standard because the mechanisms, contexts and outcomes have been explored years before the randomized control trial is carried out (Pawson, 2018). For interventions involving stimulants, the process prior to testing the stimulant in humans is extensive (Lipsky and Sharp, 2001). Therefore, the theories and mechanisms have been well-established prior to the intervention.

Cognition

Cognitive models of ADHD explain a deficit in the prefrontal cortex which is responsible for executive function (Willcutt et al., 2005). Both Barkley ( 1997) and Brown ( 2006), leading researchers in ADHD, have developed theoretical models that explain ADHD as a difficulty in managing executive function resulting in impulsive and inattentive behavior. These models have been the foundations behind interventions such as cognitive behavioral therapy (CBT), cognitive remediation, and working memory or attention training. CBT was developed to address anxiety and depression by altering thought processes and behavior to avoid the repetitive negative thinking and corresponding behavior (Beck and Beck, 2011). In a Cochrane review, CBT is argued to treat ADHD by tapping into the negative thinking which has been a result of the negative experiences associated with the core symptoms (Lopez et al., 2018). ADHD is also highly co-occurring with anxiety and depression supporting the use of CBT to target co-occurring symptoms. The techniques used in CBT often include psychoeducation followed by the acquisition of techniques to address the individual challenges the person experiences (Huppert, 2009). Goal setting is an integral part of CBT and is useful in assessing effectiveness (Beck and Beck, 2011). Of the 23 studies that assessed the efficacy of CBT alone or with medication, eight were long term and half included measures of depression and/or anxiety finding positive effects in all studies ( k = 11).

Mindfulness formed the intervention in seven of the studies and in many was combined with CBT (Bueno et al., 2015; Edel et al., 2017; Bachmann et al., 2018; Gu et al., 2018; Hoxhaj et al., 2018; Hepark et al., 2019; Nicastro et al., 2021). Similar to CBT, mindfulness aims to tap into cognition. However, CBT is focused on attention rather than other symptoms and aims to focus attention on the present, inner emotions and acceptance (Pirson, 2014). Most of these studies had positive effects on reducing symptoms, one found no difference in measures of memory (Bueno et al., 2015) and another found that mindfulness was effective for all participants, not just those with ADHD (Bachmann et al., 2018).

Psychoeducation

Psychoeducation aims to enhance a person's understanding of mental health by increasing the individual's knowledge and awareness of their condition and supporting them in sharing their experiences (Getachew et al., 2009). It also offers the opportunity for those supporting the individual such as family members, to help support ADHDers (Anderson et al., 1980). The idea is that self-awareness and knowledge is key in learning strategies to manage any condition or increase functioning rather than simply reduce the symptoms (Lotfi et al., 2010). In some areas, psychoeducation is argued to adopt a strengths-based approach (Lukens and McFarlane, 2004). Despite the strong evidence base as an intervention for affective disorders and preliminary evidence in interventions for children and adolescents with ADHD, there is limited research applying psychoeducation with ADHDers (Lukens and McFarlane, 2004; Dahl et al., 2020). Seven studies mentioned their use of psychoeducation typically combining it with another therapy or training (Wiggins et al., 1999; Hirvikoski et al., 2017; In de Braek et al., 2017; Bachmann et al., 2018; Hoxhaj et al., 2018; Gaur and Pallanti, 2020; Hartung et al., 2020). These studies indicated improvement in a range of outcomes including executive functioning, time management/organization skills, general functioning, and knowledge, as well as knowledge and coping in significant others. Therefore, we consider psychoeducation as a key mechanism that is worth incorporating in future design of interventions because of the variety of benefits for the ADHDer as well as significant others.

What outcomes have been addressed?

The outcomes assessed in each intervention varied greatly across the 143 studies. Initially, we classified the primary outcomes according to whether they involved a measurement of the core symptoms. Those outcomes beyond the core symptoms were further classified into what they assessed: behavior, cognition, physical/functioning, social, and person/emotion. We additionally discuss the outcomes in relation to short-term and long-term and qualitative methods.

Reducing core symptoms

Core outcome measures were defined as those assessing the three core symptoms of adult ADHD; impulsivity, inattention, and hyperactivity. Of the 143 studies, 108 assessed a reduction in core symptoms as their primary outcome. There are several validated measures for adult ADHD and in most of the studies a mixture of these measures was used pre and post intervention. The most popular being Conner's Adult ADHD Rating Scales (CAARS) ( k = 44) and the ADHD Rating Scale (ADHD-RS) ( k = 38). The authors of the ADHD-RS are prominent authors in the intervention studies and the CAARS was used to validate the measure. It is important to consider the authors as potential sources of bias because of their involvement in developing the measures.

Beyond the core symptoms

We categorized a range of outcomes beyond core symptoms further which are displayed with relevant examples in Table 5 alongside the number of studies involving these types of measures. The vast range in outcomes suggests the impact of ADHD to all aspects of life beyond the core symptoms, from social relationships to general self-esteem. Regarding effectiveness, primary outcomes related to cognition were associated with mixed or unclear results. Outcomes relating to social and emotion/person were assessed more often in psychosocial interventions with overall positive effects of the intervention. Aside from cognitive assessments of outcomes which typically involve using technology, and the Clinical Global Impression scale ( k = 41), which is purely based on the clinicians rating, many outcomes were assessed using self-report rating scales. In one study, a strength of ADHD, creativity, was measured and improved after the administration of a stimulant which is in line with the expert panel, that strengths are important to consider (Kahn, 2008). Evaluating outcomes associated with strengths supports the neurodiversity conceptualization of ADHD and challenges the pathological approach.

Long-term vs. short-term

We classified studies as short-term if the treatment to follow-up was under 6 months (k = 111) and long-term if they were 6 months or more (k = 32). Combination treatments were more likely to be long-term than short-term ( k = 6) indicating a longer follow-up. A total of 78% of pharmacological interventions were short-term with more than half of these (56%) lasting <12 weeks suggesting an immediacy to the expected effectiveness. In contrast, in psychosocial studies, therapeutic effect is assumed to be less immediate as they tend to address a wider range of symptoms and co-occurrences (Biederman et al., 2012). Long-term research into the impact of ADHD across the life span indicates that symptoms beyond the core symptoms such as functionality and anxiety become more prominent over time, yet current research does not reflect this because the majority of studies are short term and evaluating pharmacological interventions (Ingram et al., 1999).

Qualitative analysis

There were two studies that evaluated the effectiveness of interventions using qualitative methods (Nordby et al., 2021) with one using both qualitative and quantitative data to support their findings (Björk et al., 2020). Both studies interviewed participants about their experience of completing the interventions and extracted themes using thematic and content analysis. Their analyses support the key mechanisms identified for effective psychosocial interventions with one theme highlighting the importance of trusting relationships with the clinician delivering the intervention (Björk et al., 2020), and the other emphasizing the sense of belonging and shared experience in group interventions (Nordby et al., 2021).

The workplace

Our review aimed to include intervention studies that were specifically related to the workplace, carried out in workplace contexts, or involving workplace outcomes. Unfortunately, no studies were conducted in workplace contexts apart from two studies that were carried out in a simulated workplace environment (Wigal et al., 2010, p. 20). A total of four studies included workplace outcomes as one of their primary outcomes with a further 11 including a including work related outcomes as a secondary outcome.

The four studies that primarily assessed work-related outcomes were categorized as pharmacological or combined. The studies that assessed the efficacy of both pharmacological and psychosocial interventions combined had a positive impact on work outcomes improving functioning at work (Dittner et al., 2018) and maintaining employment (LaLonde et al., 2013). The pharmacological studies did not have a positive effect with there being no difference in work productivity (Adler et al., 2008) and no improvement in occupational status at follow up (Torgersen et al., 2014). Hence, the psychosocial aspect of the intervention might be a key mechanism having a direct impact on work outcomes.

We then manually searched each study to identify any outcomes relevant to the workplace but not explicitly measuring workplace performance or employment, 35 studies included measurements of outcomes that involved subscales assessing work-relevant outputs. We further grouped these instruments into two categories, those that assess general organization and time management and others that assess general life functioning, including a subscale measuring workplace functioning. General organization and time management scales were present in 13 studies and included scales like "ON-TOP" or "On Time Management Organization and Planning scale" and an adult adapted version of the Child Organisation Skills Measure (COSM). A total of eight studies used the same functioning measure entitled the Sheehan Disability Scale that requires participants to rate on a Likert scale how much they feel their disability impacts their work, family/home life and social/leisure activities. Other measures relating to life satisfaction and functioning use a similar form of including work as a domain that could be impacted. Most of the work-relevant measures lacked sufficient reliability or validity estimates or consisted of only one item which further limits the reliability of the study's findings and implications.

Assessment of risk of bias

After the full texts were extracted, we assessed them for risk of bias (Higgins and Green, 2011). We assessed quality using a checklist of 18 questions adapted from three existing quality assessment tools recommended in the Cochrane guidance to calculate a numeric score. We drew on The Newcastle-Ottawa scale (Wells et al., 1999), the Cochrane Collaboration's tool for assessing risk of bias (Higgins and Green, 2011), and the Qualitative Research Checklist from the Critical Appraisal Skills Programme (Tong et al., 2007) and mapped their criteria on the CIMO framework to reflect the purpose and interests of the present review, see Table 6 for domains and example items. We calculated a score for each study based on the checklist which we then compared to the scores in Table 7 as an overall assessment of bias.

Table 6

Domain

Example items

Total items

Table 7

Score /24

Risk of bias

Interpretation

We rated most studies (60%) as unclear regarding risk of bias, which raises some doubt about the results, due to the ambiguity and the lack of detail provided in the studies' methodology and findings (see Figure 4 ). Regarding any psychosocial studies, it was a challenge to comprehend the details of intervention the "skills training" interventions listed the skills they targeted but did not provide examples of how these skills were targeted. The lack of detail may be due to publication restrictions on word count, privacy (training designed for commercial implications), or little theoretical application which we note upfront as a limitation regarding the generalisability of the findings. We rated a total of 1% of the studies as high risk of bias and these tended to include poorer ratings across the categories. On the other hand, a large percentage of studies were rated at a low risk of bias in domains of performance (62%) and selection (75%) indicating a strength in research around blinding of the control and the intervention group. A further strength we identified was the appropriate recruitment strategy to encourage participation from individuals who are generalisable to the ADHD population compared to recruiting student samples which are often critiqued for their lack of ecological validity (Bello et al., 2014).

Discussion

Summary of main findings

Of 143 studies which documented interventions to support ADHDers a large proportion has been conducted in the clinical and medical fields on the efficacy of pharmacological interventions, subsequently influencing existing policy and guidelines. Our review did not locate relevant interventions in workplace contexts, designed specifically for workplaces, based on theory relevant to the workplace, and limited research measured outcomes specific to employment. This lack of evidence signposts a clear need for robust research investigating psychosocial interventions combined with or compared to pharmacological interventions. Therefore, it is evident from the existing synthesis to build an evidence base that is transferable to the workplace. Key mechanisms to further examine and include in future research are group interventions, inclusion of the support network around the ADHDer, the clinician-patient relationship, psychoeducation, and student/patient/coachee led interventions. Important considerations for future research and practice that are based on the review findings are listed in Table 8 .

Table 8

Important factors in interventions for ADHDers

Settings

Applicable to a range including: Medical/educational/ workplace

Mechanisms

Pharmacological Psychological

Brain chemistry
Cognition and psychoeducation

Outcomes

Core symptoms

Measured by the clinician, should include participant response and family/ workplace ratings

More specifically, our review findings highlighted that psychosocial interventions, especially training and coaching need to explicitly outline their methods, mechanisms, and theoretical grounding. Psychoeducation is a potential mechanism in interventions that greatly influences the efficacy and ultimately the self-awareness and understanding. Student/patient/coachee led interventions also seem to increase the effectiveness by encouraging autonomy of the challenges to address and outcomes relating to self-esteem and self-efficacy. In addition, interventions involving a significant other seem to be effective in supporting the person as a whole and increasing the knowledge of those in the individual's social network. In sum, these theoretical underpinnings can be used to guide further research.

Our review findings highlight the necessity for future intervention research aimed at supporting ADHDers to include a workplace component and assess primary work-relevant outcomes using reliable and valid scales. Intervention research should assess the efficacy of the intervention on a range of outcomes including the three core symptoms as well as skills-related outcomes and functioning in life and at work. In addition, studies should examine whether skills-based and cognitive behavioral therapies are applicable across contexts and demonstrate far transfer to the workplace. Based on the NICE guidelines, the first step in managing ADHD is to make modifications to the environment which is in line with the legal requirements for employers to make reasonable adjustments (changes to the environment) for employees with a disability. Future research and practice need to examine what adjustments and modifications are effective and revisit whether any mechanisms of existing psychosocial interventions can be applied to the workplace because this review identifies they are effective for work-relevant outcomes.

The expert panel identified disclosure of ADHD to be a significant barrier to accessing workplace support as well as access to coaching. Members of the panel highlighted the importance of psychoeducation and self-awareness of an ADHDers experiences in knowing which support is most effective for them, emphasizing a personalized approach. Therefore, structural barriers to accessing support for ADHDers should also be considered in future research and practice.

Limitations

A limitation of the review, and many others in management research, is that it did not include any gray literature despite efforts to ask the expert panel for recommendations (Rojon et al., 2021). Gray literature is important because it can reduce publication bias and influence the review synthesis (Gough et al., 2012). Hence, there may be existing work-related interventions in practice that are or are not documented in the gray literature and these could include effective mechanisms/designs that influence the review's practical recommendations. For example, the expert panel findings indicated that coaching is often used in practice yet only two studies evaluated its efficacy (Stevenson et al., 2003; Kubik, 2010). Given the typical primary settings, we also surmise that study participants were likely to exhibit symptoms which may have inhibited workplace performance and progression. In other words, we cannot preclude that the samples may have been less likely to comprise ADHDers for example in senior, managerial or professional roles.

Conclusions

From the 143 studies synthesized, none evaluated the efficacy of workplace interventions. Despite the lack of workplace specific intervention studies, the synthesis identifies effective mechanisms that could be applied to the workplace context such as group-based interventions and those which involve elements of psychoeducation, where the social support network around the ADHDer is included in the intervention. Interventions categorized as psychosocial were applicable to the workplace because they are likely to improve symptoms related to emotional regulation and social interactions that are important for work contexts. Workplace outcomes are often considered as secondary, and any skills-based interventions target general skills rather than specific work-relevant skills training. As a result, it is unclear whether the recommended support for ADHDers at work is evidence-based and accessible for practitioners who advise employees with ADHD and the employees themselves. There is a clear need to implement theory-driven, rigorously designed and context relevant interventions to facilitate the transfer of learning to the workplace. Furthermore, additional research is required regarding psychosocial interventions to overcome contemporary workplace challenges such as managing concurrent work tasks and navigating complex teams. Only once we address such important topics can we be confident that we have a rigorous evidence base to support ADHDers at work.

Data availability statement

The raw data supporting the conclusions of this article will be made available by the authors, without undue reservation.

Author contributions

KL, AM, and HT contributed to conception and design of the study. KL organized the expert panel, ran the searches, screened the studies, extracted the data, ran risk of bias assessment, and wrote the first draft of the manuscript. All authors contributed to manuscript revision, read, and approved the submitted version.

Funding

We acknowledge funding through the Birkbeck Wellcome Trust Institutional Strategic Support Fund, award 204770/Z/16/Z, which supported a 3 months period for the writing up and refinement of the current review.

Conflict of interest

The authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest.

Publisher's note

All claims expressed in this article are solely those of the authors and do not necessarily represent those of their affiliated organizations, or those of the publisher, the editors and the reviewers. Any product that may be evaluated in this article, or claim that may be made by its manufacturer, is not guaranteed or endorsed by the publisher.

Acknowledgments

The authors wish to thank the members of the expert panel for their knowledge and advice and Jessica Dark for assisting with the screening of articles. And finally, to members of the Centre for Neurodiversity Research at Work advisory board for their review of the final write up.

Footnotes

* References included in the systematic review are marked with an asterisk.

References

Biederman J., Petty C. R., Woodworth K. Y., Lomedico A., Hyder L. L., Faraone S. V. (2012). Adult outcome of attention-deficit/hyperactivity disorder: a controlled 16-year follow-up study. J. Clin. Psychiatry 941-950. 10.4088/JCP.11m07529 [[PubMed] [CrossRef] Google Scholar]

[*. Hartung C. M., Canu W. H., Serrano J. W., Vasko J. M., Stevens A. E., Abu-Ramadan T. M., et al.. (2020). A new organizational and study skills intervention for college students with ADHD. Cogn. Behav. Pract. 29, 411-424. 10.1016/j.cbpra.2020.09.005 [CrossRef] Google Scholar]

Higgins J., Green S. (Eds.). (2011). Cochrane Handbook for Systematic Reviews of Interventions Version 5.1.0 (5.1.0). The Cochrane Collaboration. Available online at: [www.handbook.cochrane.org (accessed November 23, 2021). Google Scholar]

Ingram S., Hechtman L., Morgenstern G. (1999). Outcome issues in ADHD: adolescent and adult long-term outcome. Mental Retardation Dev. Disabil. Res. Rev. 5, 243-250. [Google Scholar]

Institute of Medicine of the National Academies (2015). Committee on Developing Evidence-Based Standards for Psychosocial Interventions for Mental Disorders. [[PubMed] Google Scholar]

[*. Kahn D. (2008). Attention deficit hyperactivity disorder, creativity, and the effects of methylphenidate [Dissertation]. New York, NY: ProQuest LLC. Google Scholar]

Lai Y.-L., McDowall A. (2014). A systematic review of (SR) coaching psychology: focusing on the attributes of effective coaching psychologists. Int. Coach. Psychol. Rev. 9, 118-134. [Google Scholar]

[*. LaLonde M. M., Powers L., Solanto M. V. (2013). A 26-year-old male with distractibility, disorganization, and chronic unemployment. Psychiatr. Ann. 43, 15-19. 10.3928/00485713-20130109-04 [CrossRef] Google Scholar]

Lotfi F., Shafari P., Seifi M. (2010). Effectiveness of family psychoeducation (Atkinson and Coia Model) in general health of families coping with schizophrenia. J. Thought Behav. Clin. Psychol. 5, 65-78. [Google Scholar]

National Institute for Health Care Excellence (2019). Attention Deficit Hyperactivity Disorder: Diagnosis and Management [NICE Guideline NG87]. Available online at: https://www.nice.org.uk/guidance/ng87 (accessed October 27, 2021). [PubMed]

Oliver S., Sutcliffe K. (2012). "Describing and analysing studies," in An Introduction to Systematic Reviews, eds D. Gough, S. Oliver, and J. Thomas (London: SAGE Publications Ltd; ), 135-153. [Google Scholar]

Petticrew M., Roberts H. (2006). Systematic Reviews in the Social Sciences: A Practical Guide Malden. CEBMA.org.

Pirson M. (2014). "Mindfulness at work," in The Wiley Blackwell Handbook of Mindfulness, eds A. Le, C. T. Ngnoumen, and E. J. Langer (Chichester: Emerald Group Publishing Ltd; ), 458-470. [Google Scholar]

[*. Stevenson C. S., Stevenson R. J., Whitmont S. (2003). A self-directed psychosocial intervention with minimal therapist contacts for adults with attention deficit hyperactivity disorder. Clin. Psychol. Psychother. Int. J. Theory Pract. 10, 93-101. 10.1002/cpp.356 [CrossRef] Google Scholar]

[*. Wiggins D., Singh K., Getz H. G., Hutchins D. E. (1999). Effects of brief group intervention for adults with attention deficit/hyperactivity disorder. J. Mental Health Counsel. 21:82. Google Scholar]

Articles from Frontiers in Psychology are provided here courtesy of Frontiers Media SA

# data[].attributes.attachment_link.title
A systematic review of interventions to support adults with ADHD at work-Implications from the paucity of context-specific research for theory and practice

# data[].attributes.attachment_link.description
Attention Deficit Hyperactivity Disorder (ADHD) is estimated to affect 3.5% of the global workforce. Despite the high prevalence rate, little is known about how best to support adults with ADHD (ADHDers) at work. Relevant research is dispersed across ...

# data[].attributes.headline
The lived experiences of adults with attention-deficit/hyperactivity disorder: A rapid review of qualitative evidence (Ginapp et al., 2022)

# data[].attributes.subject
The lived experiences of adults with attention-deficit/hyperactivity disorder: A rapid review of qualitative evidence (Ginapp et al., 2022)

# data[].attributes.attachment_link.readable_text
Callie M. Ginapp, 1 , * Grace Macdonald-Gagnon, 2 Gustavo A. Angarita, 2 , 3 Krysten W. Bold, 2 and Marc N. Potenza 2 , 3 , 4 , 5 , 6 , 7

Abstract

Attention-deficit/hyperactivity disorder (ADHD) is a common condition that frequently persists into adulthood, although research and diagnostic criteria are focused on how the condition presents in children. We aimed to review qualitative research on lived experiences of adults with ADHD to characterize potential ADHD symptomatology in adulthood and provide perspectives on how needs might be better met. We searched three databases for qualitative studies on ADHD. Studies ( n = 35) in English that included data on the lived experiences of adults with ADHD were included. These studies covered experiences of receiving a diagnosis as an adult, symptomatology of adult ADHD, skills used to adapt to these symptoms, relationships between ADHD and substance use, patients' self-perceptions, and participants' experiences interacting with society. Many of the ADHD symptoms reported in these studies had overlap with other psychiatric conditions and may contribute to misdiagnosis and delays in diagnosis. Understanding symptomatology of ADHD in adults may inform future diagnostic criteria and guide interventions to improve quality of life.

Keywords: ADHD, qualitative research, lived experiences, adult, emotional dysregulation, attentional dysregulation

Introduction

Attention-deficit/hyperactivity disorder (ADHD) has an estimated prevalence of 7% among adults globally ( 1). ADHD has historically been considered a disorder of childhood; however, 40-50% of children with ADHD may meet criteria into adulthood ( 2). Diagnostic criteria for ADHD include symptoms of inattention, hyperactivity, and impulsiveness present since childhood ( 3). These criteria are largely based on presentations in children, although diagnostic criteria have changed over time to better but not completely encompass considerations of experiences of adults ( 3, 4).

Although adult ADHD is highly treatable with stimulant medication ( 5), adults with ADHD often have unmet needs. Substance use disorders (SUDs) are approximately 2.5-fold more prevalent among adults with versus without ADHD ( 6, 7). Adults with ADHD are particularly likely to be incarcerated, with 26% of people in prison having ADHD ( 8). As diagnosis of ADHD has increased considerably in recent decades ( 9), there are likely many adults with ADHD who were not originally diagnosed as children. In more recent years, ADHD is still frequently underdiagnosed or misdiagnosed as other psychiatric conditions such as mood or personality disorders ( 10). Even when patients are diagnosed with ADHD as children, many patients lose access to resources when transitioning from child to adult health services ( 11) which may contribute to less than half of people with ADHD adhering to stimulant medication ( 12).

Non-pharmacological interventions such as cognitive behavioral therapy (CBT) have shown promise with helping adults manage their ADHD symptoms, although such symptoms are not completely ameliorated by therapy ( 13- 15). A more thorough understanding of the symptoms adults with ADHD experience and the effects that these symptoms have on their lives may allow for more efficacious or targeted therapeutic interventions.

Qualitative research may provide insight into lived experiences, and findings from such studies may direct future research into potential symptoms and therapeutic interventions. The aim of this review is to describe the current qualitative literature on the lived experiences of adults with ADHD. This review may provide insight into the symptomatology of adult ADHD, identify areas where patient needs could be better met, and define gaps in understanding.

Methods

Search strategy

Using rapid review methodology ( 16), PubMed, PsychInfo, and Embase were searched on October 11th, 2021 with no date restrictions. The search terms included "ADHD" and related terms as well as "qualitative methods" present in the titles or abstracts. The full search ( Supplementary Appendix 1) was conducted with the help of a clinical librarian. The search yielded 417 articles which were uploaded to Endnote X9 where 111 duplicates were removed. The remaining 307 articles were uploaded to Covidence Systematic Review Management Software for screening, with one additional duplicate removed. The search also yielded a previous review on the lived experiences of adults with ADHD ( 17). The ten articles present in this review were also uploaded to Covidence where two duplicates were removed resulting in 314 unique articles.

Study selection

Studies reporting original peer-reviewed qualitative data on the lived experience of adults with ADHD, including mixed-methods studies, were eligible for inclusion. "Adult" was defined as being 18 years of age or older; studies that included adolescent and young adult participants were only included if results were reported separately by age. Studies that included some participants without ADHD were included if results were reported separately by diagnosis. Any studies with adult participants who were exclusively reflecting on their childhood experiences with ADHD were considered outside this study's scope, as were studies on family members, medical providers, or other groups commenting on adults with ADHD. Articles could be from any country, but needed to have been published in English. Individual case studies were not included due to concerns with generalizability.

Twenty percent of titles and abstracts were screened by two reviewers for meeting the inclusion criteria. Studies were not initially excluded based on participants' ages as many titles and abstracts did not specify age. One reviewer screened the remaining abstracts; a second reviewer screened all excluded abstracts. For full-text screening, ten articles were screened by both reviewers to ensure consistency. One reviewer screened the remaining articles; a second reviewer screened all excluded articles.

Quality appraisal

Quality appraisal was completed by one reviewer using the Joanna Briggs Institute critical appraisal checklist for qualitative research ( 18). Half of included studies did not state philosophical perspectives, two-thirds did not locate researchers culturally or theoretically, nearly one-third did not include specific information about ethics approval, and only two studies commented on reflexivity ( Supplementary Appendix 2). Given the varied quality appraisal results and the small body of literature, all studies were included regardless of methodological rigor.

Data extraction

Data extracted included general study characteristics and methodology, participant characteristics (sample size, demographics, and country of residence), study aims, and text excerpts of qualitative results. Study characteristics were entered into a Google Sheets document. PDFs of all studies were uploaded into NVivo 12, and results sections were coded using grounded theory ( 19). One reviewer extracted and coded data; a second reviewed extracted data for thematic consistency.

Results

Study characteristics

One-hundred-and-seventy-three articles were deemed relevant in title and abstract screening. Of these, 35 were included after the full-text review ( Figure 1 ). Articles were published between 2005 and 2021, and methodology mostly consisted of individual interviews (91%), with other studies utilizing focus groups (14%). Eight studies focused on young adults (18-35 years), and three were specific to older adults (>50 years). Two had exclusively male participants, and three had exclusively female participants. Nineteen were conducted in Europe, nine in North America, and three in Asia. No studies included participants from Africa, South America, or Oceania. In six studies, participants had current or prior SUDs, six studies focused on college students, four included participants diagnosed in adulthood, and two included highly educated/successful participants ( Table 1 ).

TABLE 1

Author

Aim

Country

Method

N

Age, years ¹

Sex/gender

Race/ethnicity

Kronenberg et al. ( 44)

Consequences of SUDs ² for everyday life

Netherlands

Interviews

11

43

73% male

-

Kronenberg et al. ( 30)

Process of recovery from SUDs ²

Netherlands

Interviews

9

36 (29-54)

89% male

-

Nehlin et al. ( 52)

Perception of substances in people with SUDs ²

Sweden

Interviews

14

29.6 (7.8), median 25.5

42% male

-

An overview of the identified themes is described in Figure 2 , and Table 2 provides a summary of main findings. Several of the themes overlap with each other, and such areas are identified in the main text.

Adult diagnosis

Assessment and diagnosis of adult ADHD were reported as laborious and included prior misdiagnoses ( 20- 22), lack of psychiatric resources ( 23), and physicians' stigma regarding adult ADHD ( 24). Participants were often diagnosed only after their children were diagnosed ( 23, 24). However, after receiving a diagnosis, relief was commonly reported initially. Adults noted that receiving a diagnosis helped explain previously seemingly inexplicable symptoms and feelings of being different, and allowed for participants to blame themselves less for perceived shortcomings ( 24- 31).

Identity changes were another reported finding after diagnosis, both positive and negative. Some participants reported experiencing existential questioning of their identities ( 25, 26); others reported feeling increased levels of self-awareness ( 26, 28). Some participants reported having initial doubts about the validity of their diagnoses ( 26, 28). Some reported experiencing emotional turmoil and concerns about the future ( 25, 26, 29). A commonly reported late step involved acceptance, both of themselves and their diagnoses, sometimes coupled with increased interest in researching ADHD ( 24, 25, 28, 29, 32). A ubiquitous finding was participant regret that they had not been diagnosed earlier, largely because of the many years they had gone without understanding their condition or receiving treatment ( 22, 24, 26- 30). In one study, participants who had been diagnosed as children had better emotional control and self-esteem ( 33). No studies reported participant regret about their ADHD diagnosis.

Discussion

This review characterizes the current literature on the lived experiences of adults with ADHD. This includes experiences of having been diagnosed as an adult, symptomatology of adult ADHD, skills used to adapt to ADHD symptoms, relationships between ADHD and substance use, individual perceptions of self and of having received ADHD diagnoses, and social experiences interacting in society.

Similar themes were noted in a previous review on lived experiences of adults with ADHD consisting of ten studies, three of which were included here ( 17). Such themes included participants feeling different from others, perceiving themselves as creative, and implementing coping skills. There were also other similar findings from a review of eleven studies on the experiences of adolescents with ADHD ( 55). Overlapping themes included participants feeling that ADHD symptomatology has some benefits, experiencing difficulties with societal expectations, emotions and interpersonal conflicts, struggling with identity and stigma, and having varying experiences with stimulants. The overlaps in findings from these two reviews suggest there are shared experiences between adolescents and adults with ADHD. Unique from previous reviews on lived experiences of people with ADHD are the present qualitative findings of experiences of having received diagnoses in adulthood, reflections on ADHD and substance use, occupational struggles, attention dysregulation, and emotional symptoms of ADHD.

The relationship between ADHD effects and poor occupational performance has been previously described. People with ADHD often struggle with unemployment and underemployment and functional impairment at work ( 56- 58). The findings of this review suggest that adults with ADHD may benefit from workplace accommodations and from decreased stigma around adult ADHD.

Findings suggest that people with ADHD often experience attention dysregulation as opposed to attention deficits, per se. This notion builds on previous clinical observations ( 59) and quantitative literature ( 60, 61) documenting that adults with ADHD may hyperfocus on tasks of interest. These findings suggest that inattention does not fully capture the attentional symptoms of the condition and suggest a possible need for updated diagnostic criteria.

Emotional dysregulation was described by many studies in this review, and there were no studies in which participants denied struggling with emotions. These findings provide support for a conceptual model of ADHD that presents emotional dysregulation as a core feature of ADHD, as opposed to models stating that emotional dysregulation is a subtype of ADHD or simply that the domains are correlated ( 62). Debates exist regarding whether or not specific clinical aspects of disorders constitute core or diagnostic features ( 63). The DSM-5 and ICD-11 have viewed differently the criteria for specific disorders, including with respect to engagement for emotional regulation or stress-reduction purposes [e.g., behavioral addictions like gambling and gaming disorders, and other behaviors relating to compulsive sexual engagement ( 3, 64, 65)]. Because emotional dysregulation is often overlooked as being associated with ADHD, patients experiencing such symptoms may be mistaken for having other conditions such as mood or personality disorders. Appreciating the emotional symptoms of ADHD may help psychiatrists, psychologists, and social workers more accurately diagnose ADHD in adults and decrease misdiagnosis.

The recurrent themes of difficulty naming and recognizing emotions found here suggest that ADHD may be associated with alexithymia. One study found that 22% of adults with ADHD were highly alexithymic but their mean scores on the rating scale for alexithymia were not significantly different from controls ( 66). Parenting style, attachment features, and ADHD symptoms have been found to predict emotional processing and alexithymia measures among adults with ADHD ( 67). More research is needed into the relationship between ADHD symptoms and alexithymia.

There was considerable heterogeneity in wishes regarding cures for ADHD (suggesting both perceived benefits and detriments) and stimulant use being association with SUDs. From a clinical perspective, both points will be important to understand better. With regard to the latter, ADHD and SUDs frequently co-occur; one meta-analysis found that 23% of people with SUDs met criteria for ADHD ( 68). Furthermore, youth with ADHD are seven-fold more likely than those without to experience/develop SUDs; however, early treatment with stimulants appeared to decrease this risk ( 69). Understanding better motivations for substance use in adults with ADHD as may be gleaned through considering lived experiences may help decrease ADHD/SUD co-occurrence and improve quality of life.

This review highlights gaps in the qualitative literature on adult ADHD. Nearly all included studies took place in Europe, North America or Asia; there is a dearth of qualitative research on ADHD in the Global South. Although most studies did not report race, those that did often had a majority of White participants. Racial/ethnic disparities in ADHD diagnosis may contribute to the relatively low diversity of study participants ( 9), and such disparities are further reason to expand research focused on non-White individuals with ADHD. Most studies focused on young or middle-aged adults and most participants were male; more research is needed on how ADHD may impact older adults and other gender identities. Although long considered to disproportionately affect male children at approximately 3:1 ( 70), ADHD in adults has been reported to have gender ratios of 1.5:1 ( 71). Among the adult psychiatric population, some studies have found no gender difference in prevalence or up to a 2.5:1 female predominance ( 72). This finding suggests that women often may not receive diagnoses until adulthood and there may be strong links with other psychopathologies in women. The lived experience of women with ADHD should be further examined; this insight may help to understand why women often go undiagnosed and experience other psychiatric concerns.

Future qualitative studies should explore how ADHD symptoms change over the lifespan as this was not addressed in any of the included studies. There were very few findings relating to how adults with ADHD conceptualize the condition and how their diagnosis interacts with their identities. Some studies reported on difficulties adults with ADHD have with accessing services; further exploration is needed into how the medical community can better meet the needs of this population. Findings from this review may be used to inform future ADHD screening tools. The Adult ADHD Self-Report Scale (ASRS) is a widely used screening tool that covers symptoms of inattention, impulsivity, and hyperactivity ( 73). This review suggests that symptoms may be more expansive than what is included in the ASRS and that questions on attentional dysregulation and hyperfocusing, emotional dysregulation, internal chaos, low self-esteem, and strained interpersonal relationships could be tested for validity for inclusion. The Conners' Adult ADHD Rating Scales (CAARS) includes questions on emotional lability and low self-esteem in addition to symptoms covered by the ASRS ( 74), although the scale has been found to have high false-positive and false-negative rates ( 75). Further studies are needed to develop screening tools that capture the lived experience of adults with ADHD while maintaining appropriate sensitivity and specificity. This review may also inform tailoring CBT and other therapeutic interventions for ADHD. For example, CBT may help develop skills for volitional hyperfocusing on productive tasks instead of feeling pulled away from daily activities.

This study has limitations. Being a rapid review, it was not an exhaustive search of the available literature and may have missed some relevant studies that would have been identified by a systematic search. The search strategy consisted of ADHD and qualitative research methods; studies that did not include "qualitative" in their titles or abstracts may not have been identified. This may explain why the previous review on the lived experiences of adults with ADHD ( 17) included studies not identified by this search. Although a formal quality appraisal was completed, all studies were included regardless of the quality assessment as to not further narrow the review. For example, studies were not excluded based on how they verified ADHD diagnosis as many studies did not specify if or how this was completed. Although restricting studies based on quality metrics may have made the present findings more robust, the amount of data that would have been excluded would have been considerable and may have resulted in omitting important findings. These variable quality metrics not only limit the findings of the present review, but also speak to limitations in the methodological rigor of qualitative research on adult ADHD.

Attention-deficit/hyperactivity disorder is a relatively common diagnosis among adults. Exploration of the lived experiences of adults with ADHD may illuminate the breadth of symptomatology of the condition and should be considered in the diagnostic criteria for adults. Understanding symptomatology of adults with ADHD and identifying areas of unmet need may help guide intervention development to improve the quality of life of adults with ADHD.

Author contributions

CG and MP contributed to the conception of the review. CG and GM-G performed the abstract and full text screening. CG performed the data synthesis and wrote the first draft of the manuscript. GM-G, GA, KB, and MP contributed to the revising and editing the manuscript. All authors read and approved the submitted version.

Acknowledgments

We would like to express gratitude to clinical librarian Courtney Brombosz for her assistance in developing the search strategy.

Funding

This work was supported by the Yale School of Medicine Office of Student Research One-Year Fellowship and the K12 DA000167 grant.

Conflict of interest

MP has consulted for and advised Opiant Pharmaceuticals, Idorsia Pharmaceuticals, BariaTek, AXA, Game Day Data, and the Addiction Policy Forum; has been involved in a patent application with Yale University and Novartis; has received research support from the Mohegan Sun Casino and Connecticut Council on Problem Gambling; has participated in surveys, mailings or telephone consultations related to drug addiction, impulse control disorders or other health topics; and has consulted for law offices and gambling entities on issues related to impulse control or addictive disorders. The remaining authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest.

Publisher's note

All claims expressed in this article are solely those of the authors and do not necessarily represent those of their affiliated organizations, or those of the publisher, the editors and the reviewers. Any product that may be evaluated in this article, or claim that may be made by its manufacturer, is not guaranteed or endorsed by the publisher.

References

3. American Psychiatric Association. [ Diagnostic and Statistical Manual of Mental Disorders: DSM-5. Arlington, VA: American Psychiatric Association; (2013). 10.1176/appi.books.9780890425596 [ CrossRef] Google Scholar]

4. Faraone SV, Asherson P, Banaschewski T, Biederman J, Buitelaar JK, Ramos-Quiroga JA, et al. Attention-deficit/hyperactivity disorder. [ Nat Rev Dis Prime. (2015) 1:15020. 10.1038/nrdp.2015.20 [ PubMed] [ CrossRef] Google Scholar]

5. Faraone SV, Banaschewski T, Coghill D, Zheng Y, Biederman J, Bellgrove MA, et al. The world federation of ADHD international consensus statement: 208 evidence-based conclusions about the disorder. [[ Neurosci Biobehav Rev. (2021) 128:789-818. PubMed] PMC free article] [ Google Scholar]

19. Strauss A, Corbin JM. [ Basics of Qualitative Research: Grounded Theory Procedures and Techniques. Thousand Oaks, CA: Sage Publications, Inc; (1990). 270 p. Google Scholar]

33. Brod MS, Perwien AR, Adler LA, Spencer TJ, Johnston JA. Conceptualization and assessment of quality of life for adults with attention- deficit/hyperactivity disorder. [ Prim Psychiatry. (2005) 12:58-64. Google Scholar]

59. Brown TE. [ Attention Deficit Disorder: The Unfocused Mind in Children and Adutls. New Haven, CT: Yale University Press Health & Wellness; (2005). Google Scholar]

64. World Health Organization. [ International Statistical Classification of Diseases and Related Health Problems. 11th ed. Geneva: World Health Organization; (2019). Google Scholar]

72. Gerhand S, Saville CWN. ADHD prevalence in the psychiatric population. [ Int J Psychiatry Clin Pract. (2021):1-13. [Epub ahead of print]. 10.1080/13651501.2021.1914663 [ PubMed] [ CrossRef] Google Scholar]

Articles from Frontiers in Psychiatry are provided here courtesy of Frontiers Media SA

# data[].attributes.attachment_link.title
The lived experiences of adults with attention-deficit/hyperactivity disorder: A rapid review of qualitative evidence

# data[].attributes.attachment_link.description
Attention-deficit/hyperactivity disorder (ADHD) is a common condition that frequently persists into adulthood, although research and diagnostic criteria are focused on how the condition presents in children. We aimed to review qualitative research on ...

# data[].attributes.headline
ADHD at the workplace: ADHD symptoms, diagnostic status, and work-related functioning (Fuermaier et al., 2021)

# data[].attributes.subject
ADHD at the workplace: ADHD symptoms, diagnostic status, and work-related functioning (Fuermaier et al., 2021)

# data[].attributes.headline
An Employer's Guide to ADHD in the Workplace (Scottish ADHD Coalition) 

# data[].attributes.subject
An Employer's Guide to ADHD in the Workplace (Scottish ADHD Coalition) 

# data[].attributes.headline
“Retirement is one hell of a change”: Autistic people’s experiences of retiring. Jade Davies, Rose Matthews, Anna Melissa Romualdez, Liz Pellicano & Anna Remington (Autism in Adulthood, 2024). Free to access pre-print below.  

# data[].attributes.subject
“Retirement is one hell of a change”: Autistic people’s experiences of retiring. Jade Davies, Rose Matthews, Anna Melissa Romualdez, Liz Pellicano & Anna Remington (Autism in Adulthood, 2024). Free to access pre-print below.  

# data[].attributes.attachment_link.readable_text
Abstract

Limited research has examined autistic people's experiences of aging. While the significance of retirement in the context of aging has been highlighted by autistic people themselves, there is a dearth of research in this regard, with only one study focusing on the retirement experiences of one autistic man. In this study, we spoke to 12 older autistic people who had retired in the last 10 years, or were planning to retire in the next five years, to generate some of the first insights regarding autistic people's retirement experiences. Experiences were diverse. Challenges in retirement planning and adjustment were reported by some, while others viewed retirement as a positive respite from challenging work environments. The availability of more leisure time was appreciated by some, while others encountered ongoing responsibilities and obstacles hindering desired activities. A common theme was the inadequate support available for autistic people during retirement. Concerns about the aging process, including concerns about health decline and the possibility of entering residential care, were also common. Future research should examine the suitability of residential care for older autistic adults, consider alternative autistic-led group living arrangements, and explore avenues for improved support during and after the retirement transition.

License

CC-By Attribution 4.0 International

# data[].attributes.attachment_link.title
"Retirement is one hell of a change": Autistic people's experiences of retiring

# data[].attributes.attachment_link.description
Limited research has examined autistic people's experiences of aging. While the significance of retirement in the context of aging has been highlighted by autistic people themselves, there is a dearth of research in this regard, with only one study focusing on the retirement experiences of one autistic man.

# data[].attributes.headline
Workplace Neurodiversity: An Exploratory Study (Marshall)    

# data[].attributes.subject
Workplace Neurodiversity: An Exploratory Study (Marshall)    

# data[].attributes.headline
Neurodiversity and Workplace Social Capital Effects on Employee Attitudes and Intentions (Edwards) 

# data[].attributes.subject
Neurodiversity and Workplace Social Capital Effects on Employee Attitudes and Intentions (Edwards) 

# data[].attributes.body
>37>3;9>2

1=

B;67F9:G54:2

# data[].attributes.attachment_link.readable_text
Degree

Doctor of Psychology (Psy.D.)

Abstract

Neurodivergent employees have higher turnover rates than their neurotypical peers, andmuch remains unknown about how to improve their workplace experience. The purpose of this quantitative study was to examine the relationships between neurodiversity and workplace social capital on job satisfaction and turnover intent. Social cognitive career theory (SCCT) informed the study design. Working adults (N = 1,243) in the United States recruited using convenience sampling and MTurk participated through an anonymous online survey. Data analysis was conducted using three-way ANOVA and mediation. Significant three-way interactions were found between gender, job classification, and likelihood of having attention deficit hyperactivity disorder (ADHD) on three separate dependent variables: workplace social capital, job satisfaction, and turnover intent. The relationships between neurodiversity symptomology and both job satisfaction and turnover intent were significantly mediated by workplace social capital. These findings add to the body of knowledge in understanding differences between individual workplace experiences relative to worker neurodiversity which can inform HR practice and workplace training and retention initiatives. This study may support social change by encouraging greater consideration of adult ADHD, neurodiversity and workplace social capital within diversity and inclusion (D&I) research and workplace initiatives.

Recommended Citation

Edwards, Alice, "Neurodiversity and Workplace Social Capital Effects on Employee Attitudes and Intentions" (2021). Walden Dissertations and Doctoral Studies. 9938.
https://scholarworks.waldenu.edu/dissertations/9938

# data[].attributes.attachment_link.title
Neurodiversity and Workplace Social Capital Effects on Employee Attitudes and Intentions

# data[].attributes.attachment_link.description
Neurodivergent employees have higher turnover rates than their neurotypical peers, andmuch remains unknown about how to improve their workplace experience. The purpose of this quantitative study was to examine the relationships between neurodiversity and workplace social capital on job satisfaction and turnover intent. Social cognitive career theory (SCCT) informed the study design.

# data[].attributes.headline
Neurodiversity at work: Demand, supply and a gap analysis (MacDowell, Doyle, and Kiseleva).  

# data[].attributes.subject
Neurodiversity at work: Demand, supply and a gap analysis (MacDowell, Doyle, and Kiseleva).  

# data[].attributes.headline
A Literature Review on High-functioning Autistic Employees (Loisin). [Note from Rose Matthews: I do not support the use the term 'high-functioning' but I have included this paper because it has some useful content] 

# data[].attributes.subject
A Literature Review on High-functioning Autistic Employees (Loisin). [Note from Rose Matthews: I do not support the use the term 'high-functioning' but I have included this paper because it has some useful content] 

# data[].attributes.attachment_link.title
View of A Literature Review on High-functioning Autistic Employees | DBS Applied Research and Theory Journal

# data[].attributes.headline
Physical workplace adjustments to support neurodivergent workers: A systematic review (Weber et al.)

# data[].attributes.subject
Physical workplace adjustments to support neurodivergent workers: A systematic review (Weber et al.)

# data[].attributes.headline
Autism at work: a biopsychosocial model and the impact on working adults (Nancy Doyle)  

# data[].attributes.subject
Autism at work: a biopsychosocial model and the impact on working adults (Nancy Doyle)  

# data[].attributes.attachment_link.readable_text
Neurodiversity at work

Neurodiversity has become a popular concept at work and is increasingly popular within the business press, following the promotion of targeted inclusion programs from famous companies such as SAP, Virgin and Microsoft 1 as well as the worldwide docuseries 'Employable Me'/The Employables'. 2 However, from an academic point of view, neurodiversity is not yet well captured, suffers from poor and conflicting definitions, confusing, overlapping symptomatology and little guidance on practical support at work. This introductory article provides an overview of the history of neurodiversity in order to contextualize a description of occupational presentation, which has wide reaching impact on the social determinants of health. Bringing together threads from disparate research fields including medicine, psychology, sociology, education, management science and vocational rehabilitation, a multi-disciplinary, biopsychosocial summary of the current picture is presented. A key issue for clinicians is understanding how to respond to the emerging dynamics when delivering everyday consultation and treatment for individuals. Practice guidance is provided, as well as advice on referring individuals to available workplace support. Avenues for future, multi-disciplinary research are recommended.

Defining neurodiversity

The term 'Neurodiversity' was originally developed by stakeholders influenced by the social model of disability. 3-5 It was based on 'Biodiversity', a term primarily devised for political ends: to advocate for conservation of all species, since a high level of biodiversity is considered desirable and necessary for a thriving ecosystem. Neurodiversity advocates adapted this principle to argue that society would benefit from recognizing and developing the strengths of autism or dyslexia (for example) instead of pathologizing their weaknesses. 6,7 Within the discipline of psychology, though, weaknesses have historically been the focus of research and practice. Analysis of cognitive strengths is only used to differentiate between general learning disabilities and specific-learning disabilities. A definition has emerged for psychologists and educators which positions neurodiversity 'within-individuals' as opposed to 'between-individuals'. 8 To elucidate: the psychological definition refers to the diversity within an individual's cognitive ability, wherein there are large, statistically-significant disparities between peaks and troughs of the profile (known as a 'spiky profile', see ). 8,9 A 'neurotypical' is thus someone whose cognitive scores fall within one or two standard deviations of each other, forming a relatively 'flat' profile, 8 be those scores average, above or below. Neurotypical is numerically distinct from those whose abilities and skills cross two or more standard deviations within the normal distribution.

is adapted from the British Psychological Society report on Psychology at Work, 10 page 44, and depicts scores from the Wechsler Adult Intelligence Scale, 11 which provides clear guidance on the level of difference between strengths and weaknesses that is typical or of clinical significance. Scores are used to support a diagnosis of dyslexia, Developmental Coordination Disorder (DCD, previously referred to as 'dyspraxia', see ) and Attention Deficit Hyperactivity Disorder (ADHD) 8,12,13 and to understand the cognitive ability of an employee following injury or illness. 14

Table 2

Condition

First records

Dominant 20th Century approaches

Since neuroscience paradigm

ADHD
Prevalence around 5% worldwide 54,113 but higher in USA. 114

1798, some patients are described with an inability to maintain concentration; also referenced in 1844 as 'Fidgety Phil' syndrome, 115 where no general disability can explain the difficulties related to an absence of 'moral control'. 116

Known as hyper-kinetic reaction of childhood 117 and
Attention Deficit Disorder (with and without hyperactivity). 118
Treatment with stimulants present from the 1940s, though not widely used initially as most behaviour attributed to poor parenting. 116

Deficits in dopaminergic/noradrenalinergic pathways 119 and combined executive functions 120 implicated. Still mainly treated through stimulant medication augmented with psycho-social support for parents, teachers and individuals. 113,121

Autism
Prevalence between <1 and 1.6% globally, affected by diagnostic criteria and access to services. 122

Re-interpretation of historical medical and legal reports indicate case studies of autism in popular discourse since 1700s, both a specific difference issue related to eye contact and social communication as well as a general learning disability in which no 'normal' day-to-day social functions are observed. 123

'Refrigerator Mother' hypothesis was proposed 124 and
Autism was considered a 'Schizophrenia of Childhood'. 125 Asperger's syndrome used to differentiate high from low functioning. 118,123
'Theory of Mind'-an observation-based theory inferring deficits in social imagination. 126
The notion of an 'Autistic Spectrum' with behavioural symptoms along a continuum. 127

Differences in connectivity of the brain, lower activity in pre-frontal cortex affecting executive functions 108,128 and higher activity in sensory cortex resulting in sensory over-responsivity; 'Intense World Theory'. 106,107
Latest advice from American Psychiatric Association 129 indicates one spectrum with different levels of IQ coexisting rather than determining separate sub-conditions.

DCD
Prevalence estimated up to 6%. 130

A physician named Collier is reported as providing the first report on 'congenital maladroitness' in the early 20th century 131 defined as difficulty with motor coordination despite normal levels of intelligence.

Dyspraxia, developmental apraxia absorbed into the pejoratively named 'Clumsy Child Syndrome' in the later 20th century, 132 however dyspraxia and developmental coordination disorder more widely used in diagnosis according to DSM criteria. 118

Consensus on terminology of Developmental Coordination Disorder (DCD) within DSM criteria. 129 Neurobiological observed differences include internal modelling and executive functions deficits, but likely point again towards a complex whole brain approach in which several specific pathways may be all or partially compromised. 130

Dyslexia up to 10% 45

Dyslexia described as 'word blindness' in medical journals from the late 1800s, referring to both acquired and developmental inability to read despite otherwise normal levels of intelligence. 133

Initially thought to be related to visual perception 134 but later in the 20th century this assumption was superseded by Phonological Deficit Theory and more specifically a deficit in the phonological component of working memory, part of the executive functions. 135,136 Several other competing neurocognitive theories are proposed 137 and there is a lack of a single, unifying theory. 138

Neuroimaging suggests that dyslexia is not caused by a single neurocognitive function but is instead a complex presentation with many potential causes, dependent on the interaction between individual neurocognitive capacity and the language that one speaks. 139

To refer to individuals, the terms 'neurodivergent' 'neurodifferent' and 'neurodiverse' are in current use both academically and for self-identification; this is a matter of stakeholder debate. 15-17 In recognition of the lack of consensus regarding which term is more appropriate, all may be referred to interchangeably, asking individuals how they prefer to identify. Spiky-profile conditions have historically been grouped under umbrella terms such as hidden impairments, specific-learning disabilities and neurodevelopmental disorders. Autistic autism researchers have critiqued the widespread use of deficit highlighting in nomenclature and advise a wide scale revision of language. 18 A new umbrella term is proposed herein for included conditions that is neutral and statistically accurate: 'neurominorities'.

Introduction: an emerging paradigm

Stakeholder activism

Judy Singer, the Australian sociologist, is widely credited with producing the first research-based publication of the term in 1999, following her thesis in which she synthesized her first-person experience in the middle of three generations of women 'somewhere' on the autistic spectrum, with critical disability studies. 19 In the decades since publication, the term and its philosophy of difference, not deficiency, has been appropriated for a wider range of conditions, diagnoses and identities and formed a grass roots movement. 17,20 This paper focuses on the main four neurominorities of ADHD, autism, DCD and dyslexia for ease of comparison, literature review and recommendation. It is acknowledged that this will overlook some conditions and complexities within the emerging paradigm, yet many of the principles can be applied in a wider context.

The Neurodiversity movement holds ambitions of equal rights for members, appreciation of the diversity of human cognition and political power to break down structures of exclusion. 6 Nowhere has this argument been more compelling to date than the innovative technology, finance and defence industries, where programs to deliberately hire neurominority employees are becoming more frequent as talent strategies, rather than social responsibility projects. 1,15,21-25 Neurominority employees may bring talents, yet, in line with the spiky profile, there may also be difficulties. Understanding the discourse is essential for understanding neurodiversity at work because it affects how we must fluidly move between medical and social models to support individuals and employers.

Ontological controversy

The disparity between the language and assumptions of psychological and medical 'experts' and the lived experience of 'stakeholders' has led to dissent and conflict both between and within these groups. 6,17,26 For example, some argue that autism is inherently disabling irrespective of context 27; some propose that differentiating between autistic people who are 'high' or 'low' functioning is fundamentally discriminatory, 28 whereas others propose their identity to be a superpower. 29 In practice, we will encounter individuals from all these polarized perspectives, some who feel strongly about their position, and will assert their right to be treated accordingly. However, we should not presume that those who do not self-advocate articulately to be without preference; agency in accessing professional services is compromised by layers of intersectional exclusion including race, gender, class and sexual orientation, as well as verbal skills themselves. In research, there are increasingly calls to include stakeholder voice ('nothing about us without us' 5) and to focus on matters of importance to those with lived experience, such as workplace adjustment interventions, outcomes and inclusion best practice, as opposed to diagnosis and deficits. 30-32 Educopsychological and psychiatric debates include comorbidity and the difficulty distinguishing between the conditions, 33-37 as well as controversy around the 'correct' approach for differential diagnosis, given that the main conditions are diagnoses of exclusion, in which there are no objective, clear measures of assessment. 38-40 A clear way forward for medical research and clinical practice is thus lacking, and it is important to understand the confusing influence of a disconnected discourse upon occupational health guidance. Employers may look to experts for advice and find the advice incongruous with the popular business narrative. Employees may be hired as part of a talent program yet present with stress and anxiety. Practitioners are thus advised to enquire with patients directly for feedback and to approach any treatment sensitively, balancing the influence of intervention protocol controversy: for example, Applied Behavioural Analysis is considered abusive and traumatic by many autistic people. 41

The biopsychosocial history of neurominorities

Psychological adoption

The umbrella term of neurodiversity began to replace 'Specific Learning Difficulties' for some educational psychologists in the late 2000s 20,42,43 and became common within occupational psychology in the 2010s. 13 In psychological literature, ADHD, autism, DCD and dyslexia are the conditions most frequently referred to under this banner, though others have also included mental health conditions such as depression and anxiety, 6,9,20 general learning disability 20 as well as Tourette Syndrome, dyscalculia, dysgraphia and acquired brain injury, 9 depending upon whether the within or between definition is applied. Distinction has been made between conditions that are applied and developmental, clinical and developmental, acquired and transient or acquired and chronic 9; depicts a taxonomy of neurominorities adapted and updated from the British Psychological Society's Psychology at Work report. 10 (Please refer to the full chapter for more details).

Table 1

Dyslexia, DCD, dyscalculia, dysgraphia

Tourette syndrome, autism and ADHD

Mental ill health

Neurological illness or brain injury

Applied, developmental neurominority

Clinical, developmental neurominority

Acquired neurominority (potentially transient)

Acquired neurominority

* Born with condition * Relates to applied, educational skills such as reading or motor control * Not considered a health condition

* Born with condition * Relates to behavioural skills such as communication and self-control * Considered a health condition (currently)

* Develops in response to a health condition such as anxiety or depression

* Could return to 'neurotypical' if health condition resolves

* Develops in response to a health condition

* Potentially resolves as injury heals or worsens as health deteriorates

The major themes within the medical history of the main developmental conditions are presented in the next section. Neurocognitive, psychosocial and legal commonalities are noted, within which occupational advice must be contextualized. A timeline of the various theories is depicted in . Note that all start with a pathologization of socially referenced behaviour or skill, followed by varying hypothetical causal nature/nurture theories. All include reference to 'Executive Functions' by the 21st century, defined as 'goal-oriented self-regulation-including planning, organisation, response inhibition and behavioural sequencing'. 44

An evolutionary critique of the psychomedical model

Given the extent of overlap between the conditions, the under-diagnosis of females who instead present with anxiety, depression or eating disorders, 45,46 and the estimated prevalence of each condition, a reasonable estimate of all neurominorities within the population is around 15-20%, i.e. a significant minority. Research supports a genetic component to most conditions 47 which, when considered with combined prevalence rates, suggests an evolutionary critique of the medical model: if neurodivergence is essentially disablement, why do we keep replicating the gene pool? The less extensive, yet persistent, body of work indicating specialist strengths within neurodiversity, 9,20,48-52 supports the hypothesis that the evolutionary purpose of divergence is 'specialist thinking skills' to balance 'generalist' thinking skills (as per the 'spiky profile'). The evolutionary perspective is congruent with the Neurodiversity movement and essential to understanding the occupational talent management perspective that is currently in vogue.

The psychomedical histories outlined in speak to the evolutionary critique for two reasons. Firstly, they demonstrate the consistency of the 'specific' rather than 'general' nature of impairment (the spiky profile) across all four conditions over time, irrespective of the changing nature of causal theories. The conditions are named and identified according to their most prominent deficits, which are themselves contextualized within our normative educational social history. Dyslexia is discovered around the same time as literacy becomes mainstream through education; ADHD becomes more prevalent with the increasing sedentary lifestyles from the industrial revolution; autism increases in line with modern frequency of social communication and sensory stimulation and DCD as our day-to-day need for motor control of complex tools and machinery becomes embedded. The evolutionary critique of neurodevelopmental disorders is that their perceived pathology is related to what we consider normal in modern times, as opposed to what is normal development within the human species. 3,7,53-55 Secondly of interest from the timeline in is the final column, wherein we see that, despite consistent observation of similar neurobiological differences, we lack a single unifying theory for any condition.

Towards a biopsychosocial model

Most humans are average in all functional skills and intellectual assessment, some excel at all, some struggle in all and some have a spiky profile, excelling/average/struggling. The spiky profile may well emerge as the definitive expression of neurominority, within which there are symptom clusters that we currently call autism, ADHD, dyslexia and DCD; some primary research supports this notion. 33,56 In the future, these may shift according to our educational and occupational norms such as social demands, sedentary lifestyles, literacy dependency and automation of gadgets. To elucidate, although there are clear biological markers for those with a spiky profile 33,55 which lead to observable, measurable psychological differences, there is nothing innately disabling about those differences when we consider a traditional, tribe-based community of humans. Within the biopsychosocial model of neurodiversity, understanding work-related intervention and treatment becomes more about adjusting the fit between the person and their environment 58 than about treating a disorder. Critical review of the extant biopsychosocial research supports the social model proposition that the individual is not disabled, but the environment is disabling.

The legal status of neurodiversity

Since the early 21st century, most nations have adopted disability legislation congruent with the United Nations Statute 59 on the rights of Persons with Disabilities. Such legislation refers to the need for organizations to make 'accommodations', to use US terminology, 60 referred to in the UK as 'adjustments', 61 such that individuals with disabilities can learn, work and be included in society. The term accommodation is adopted for the remainder of this paper to denote the general process of compromise and flexibility; adjustment is used to refer to the implementation of equipment, services or changes to requirement, though in practice the two are used interchangeably dependent on geographical location. Note that there is no compulsion for individuals to change to fit in, no mention of treatment for individuals. Legally compliant intervention is at the organizational level, including the requirement for businesses, services and educators to work towards 'Universal Design', in which there is flexibility of environment, communication and tools to accommodate the widest possible range of human experience. 62 Disability status is predicated not on diagnosis of condition, but on the assessment of functional impairment, the extent to which the individual is inhibited and excluded. One could have a diagnosis of diabetes, spinal injury, psychiatric disorder and be disabled or not, depending on the impact on 'normal day-to-day functioning' that persists over a minimum period, for example 12 months. 61 The context may or may not disable the individual ('disabled people') as opposed to the disability automatically assigned to the person by nature of their diagnosis (person with a disability). From a legal perspective then, any form of neurominority may qualify for protections requiring accommodation depending on what is currently normal and how that interacts with an individual's cluster of functional difficulties.

Neurodiversity should not be used as a synonym for disability, hence the adoption of the neurominority term herein. Many neurominority employees find themselves in need of disability accommodation at work. 63,64 Irrespective of legal protection, social and occupational exclusion are endemic for neurominorities. Studies vary in the percentages quoted, yet there is persistent evidence of disproportional representation within prison populations, 64-67 long-term unemployment 32,68-70 and failure to achieve career potential. 70,71 Exclusion rates point to an economic, social and moral imperative to improve outcome-based research, from which we can advise practitioners and individuals on which adjustments improve inclusion, within a biopsychosocial model.

Occupational considerations of neurodiversity

To summarize the context before moving to presentation and accommodation: an occupational narrative has developed around the 'diamond in the rough', 72 in which neurominority employees resemble thwarted geniuses, who would be able to succeed given the right support, environment or tools. The extent to which this narrative is plausible for individuals is not well captured by academic research, which is biased towards reductive neuropsychology in search of 'bits that are broken' 3,73 as opposed to more functional, contextual performance. A reductive, medical paradigm of research is incongruent with the legal status of neurominorities as protected conditions in most developed countries, to which organizations must adjust. Given this, in the following section, a neutral pragmatic summary of knowledge regarding individual-level symptoms and occupational difficulties is attempted. The effectiveness of adjustments and issues related to systematic inclusion at the organizational level is discussed.

Occupational symptomatology

At the functional level, there are similarities between neurominorities in terms of presentation. As alluded to in , executive functions are a common psychological complaint, resulting in difficulties with short-term and working memory, attention regulation, planning, prioritizing, organization and time management. Self-regulation of work performance is required in many modern employment contexts and therefore these issues present as the most disabling for individuals. 74 There is also commonality among strengths, many related to higher order cognitive functioning reliant on comprehension and creativity. 75 , adapted again from the British Psychological Society's 2017 report, 10 describes reported strengths and weaknesses associated with the four main neurominorities. The comparatively fewer references regarding strengths may reflect a research bias as opposed to an accurate representation of lived experience; it certainly is incongruent with the 'talent' narrative that is becoming dominant in workplaces.

Table 3

ADHD

Time management 140
Concentration, attention and self-regulation difficulties 141
Insomnia, depression, injury and absence 142
Maintaining employment 143
Difficulty with team work 144

Creative thinking 145
Visual-spatial reasoning ability 8
Hyper-focus, passion and courage 20

Autism

Time management 146
Concentration and coping with more than one task 147
Social and communication difficulties 148
Need for routine 148

Memory ability, and other 'specialist individual skills' including reading, drawing, music and computation 149
Innovative thinking and detail observation 20

DCD

Difficulties with driving, self-care, organization, communication and self-esteem 32,51
Processing speed and working memory 8
Persistence of motor difficulties in operating equipment 150

High verbal comprehension ability 8

Dyslexia

Literacy, memory, organization, communication and self-esteem 12,151
Memory, organizational skills, time management, stress management, literacy 74
Workplace participation in terms of mental functions and social interactions 63
Cognitive functioning and social self-esteem 152,153
Higher incidence of worklessness and incarceration 65,154

Entrepreneurialism 50
Creativity and cognitive control 153
Visual reasoning 154
Practical skills, visual-spatial skills and story-telling ability 155

Accommodations

The aim of occupational accommodations for neurominorities is to access the strengths of the spiky profile and palliate the struggles. The most frequently deployed adjustments 31,76-78 fall into the categories listed in . Note that additional time to complete work is not mentioned; this adjustment is common in education but not at work, because it is not reasonable to pay someone the same money to produce less work. In exams, the validity of extra time is because we are measuring long-term memory or analytic skill via the medium of literacy alone, when verbal, visual and/or spatial skills may be more relevant in the workplace (for example multiple choice quizzes to assess medical knowledge). When assessment methods are more matched to the eventual job performance (for example observation of physical examination skills using role play patients) extra time becomes less important. This principle applies across education, recruitment and employment but is poorly understood by lay people or those without an understanding of cognitive functions and the antecedent components of job performance.

Table 4

Work Environment flexibility

Reducing sensory distractions by allowing flexible hours;
use of private meeting rooms;
noise-cancelling headphones;
redesign of shared working space.

Schedule flexibility

Avoiding rush hour travel to prevent sensory overwhelm;
remote working to avoid sensory overwhelm, improve concentration and reduce social communication demands.

Supervisor or co-worker support

Additional feedback time with supervisor;
differences in instructions provided-more clarity or concreteness given.

Support from different stakeholders

Peer mentoring networks within the company;
allowing support activities via employee assistance, mental health, or family support throughout the working day;
allowing access to stakeholder groups and charities throughout the working day.

Executive functions coaching

Workplace coaching to focus on areas such as planning, prioritization, organizational skills using workplace coaching psychology.

Training

Adjustments to training provision including sending materials in advance or providing additional induction training.

Work-station adjustments

Use of dual screens to improve concentration, whiteboards and other aide memoires;
standing desks with wobble boards to improve access to movement through the day.

Assistive technology and tools

Speech-to-text, text-to-speech software to reduce demands on literacy, handwriting skills and improve concentration;
mind mapping software to support shift from overview to detailed thinking;
specialist spell checkers designed for dyslexia;
planning and memory software.

Literacy coaching

This will be targeted coaching based on the literacy requirements of the role rather than teaching basic skills, such as speed reading, making notes whilst reading, summarizing or structuring and planning written work.

Adjustment effectiveness

There are very few studies evaluating the effectiveness of adjustments in the workplace and this is an urgent research need. 79 Rice and Brooks 30 stated the following in the conclusion of their adult dyslexia interventions review (p. 12): 'good practice in this field rests almost entirely on professional judgment and common sense, rather than on evidence from evaluation studies'. Over-reliance on heuristical guidance must be addressed by the research communities, and requires collaboration within applied psychological sub-disciplines, occupational therapy, occupational medicine and human resources departments. The limited evidence that does exist broadly supports the implementation of adjustments 64,74,77,80,81 but, without sophistication, we are unable to speak to quality control, return on investment or predict which type will work for different individuals/roles. Intensive personalized employment support (IPS) such as that provided to autistic people with multiple needs and people with moderate mental health conditions have found that the benefits only outweigh the costs when wider community measures such as housing and health costs are factored in. 82-85 However, employment-based neurominority adjustments typically cost <£1200 per person, 86 which is cheaper than the cost of re-recruiting 87 and significantly cheaper than IPS. More broadly, cross-sectional research has indicated biases in cost perceptions of disability adjustment, with objective records of expenditure less than presumed. 88 Although an appropriate evidence-base builds, practitioners must be guided by individual presentation, compromise and collaboration with employers, bearing in mind the biopsychosocial model and the strongly held opinions of individuals. Professionals can support the ambitions of the Neurodiversity movement in the workplace but must also maintain a cautious approach to prognosis of workplace performance improvements and job retention until we have more longitudinal data.

Accessing adjustments

In the UK, the Access to Work program funded by the Department of Work and Pensions provides a free assessment to over 30 000 disabled people per annum, including ~6000 neurominority employees or those with mental health needs. 86 The program acts as triage and signposting, enabling individual employees to self-refer and acquire an assessment of workplace need, following which a report is produced recommending adjustment as per the types in . Access to Work is widely respected in the UK and valued by users 89 but there is a clear short fall in resourcing, considering the number of eligible individuals likely to be working in the UK. There are few programs of its kind internationally. The same role is more typically provided informally or privately by Occupational Health, Human Resources or Employee Assistance Programs from an organizational point of view, acting on behalf of the company rather than the individual. Professionals providing these services are less likely to possess the specialist skills in working with executive functions deficit, and are liable to misdiagnose/mistreat executive dysregulation as stress, anxiety or wilful lack of motivation, particularly with women, black people and ethnic minorities. 46,90,91-94 Clinicians are advised to check for specialist knowledge on referral rather than assume a mental health generalist will have required expertise. Adjustments tend to be provided as a compliance activity per individual, with few businesses looking systemically at Universal Design 62,95 for neurominorities as would be recommended in the United Nations Convention on disability. 59 Access to accommodations is thus predicated on individual disclosure, typically occurring following a conflict or episode of poor performance. Individuals are reluctant to voluntarily disclose in advance 79,96,97 as they fear discrimination (with some justification 98) and therefore the aims of the disability legislation programs worldwide are not yet having the intended effect on inclusion. 99-101

Implications of the neurodiversity phenomenon for medical practitioners

In this final section, the potential ways in which medical practice can embrace the developments of the Neurodiversity movement and support individuals within a biopsychosocial model are explored.

Reactional stress and hidden neurominority

Physicians are likely to be interacting with neurominority individuals who are in work, unemployed, incarcerated or requiring health care. Neurominorities can be misdiagnosed as mental health issues due to symptoms overlapping with bipolar disorder, anxiety, depression and/or eating disorder. 45,46,102 A presenting mental health need may be a direct consequence of unsupported neurominority; an individual who is frustrated, excluded and unable to reach potential will naturally feel anxious or depressed. We need to improve recognition of cognitive symptoms (as opposed to mood) in frontline medical and nursing services to ensure accurate signposting. There is a potential for a vicious cycle in which treatment for mood and stress will only mask an underlying cognitive deficit or difference leading to 'revolving door' patterns of health care access. Where possible, physicians should feel comfortable to ask about the possibility of a neurominority as an explanation for ongoing distress and underachievement and refer to a specialist psychiatrist or psychologist for confirmation. It must also be noted that those experiencing precarious employment and unemployment will be experiencing adverse impacts on health, stress and well-being more generally, 103 that those with neurominorities are more likely to be under-employed and that access to diagnosis is compromised by intersectional influences of race, gender, sexual orientation and socioeconomic background.

Following diagnosis

Once a condition or conditions have been identified, an individual may feel vindicated, and experience catharsis. Psychology practitioners report their clients' mental shift following correct diagnosis at the identity level and warn that, done badly, it can lead to disempowerment. 12 However, done well, understanding one's strengths and weaknesses can lead to breaking down barriers and removing self-reproach. A late diagnosis adult client reported 'now that I understand my dyspraxia and that I literally have less processing power than most people, I don't give myself such a hard time. I take things slowly, at my own pace, which reduces my anxiety and actually makes me do things more accurately'. Physicians can recommend approaching employers for accommodation advice, recommending Access to Work if in the UK and human resources departments globally. A benefit of increased, general Neurodiversity awareness has been capacity building within businesses to manage and respond to requests for adjustments. Although not every employer has an established process, and there are still incidences of discrimination, guidance from respected professional bodies in human resources is clear about legally-compliant activities and how to access them. 104,105

Accommodations in providing medical treatment

Differences in sensory perception have been reported as a hallmark of neurominority internal experience, 102-108 which may affect pain management, sleep patterns and increase routine-change difficulties during in-patient care. Pamphlets explaining treatment, obtaining consent, confirming after care may not be read or absorbed by those struggling with literacy or attention. Difficulties in independently maintaining organizational routines might affect self-management of medication protocols. Neurominority patients may therefore respond differently to treatment, with increased anxiety or confusion. A patient who appears unwilling to take responsibility for health care may be forgetful not defiant, even if they seem verbally competent, which could result in prejudicial treatment from clinicians. A significant risk is that a neurominority individual may experience a 'meltdown', defined as 'an intense response to overwhelming situations'. 109 For those with sensory sensitivity, overwhelm can be caused by pain, bright hospital lights, background noise, smells and continual changes in personnel. Someone experiencing a meltdown may scream, shout, swear and become physically aggressive to avoid being touched (as opposed to physically violent with intent to harm). Medical staff in all contexts need to be aware that any unnecessary physical contact or verbal persuasion in this circumstance may exacerbate distress rather than palliate and that an appropriate response is to provide calm, quiet decompression space wherever possible.

Treatment for mental ill health, insomnia and stress-related illness must be reviewed in terms of the reactive nature of distress in the context of continual sensory overload and/or exclusion. A common theme in discrimination for neurominorities is to be told to 'try harder' or 'yes, but we all feel like that sometimes', leading to self-doubt and increased exposure to harm. Validation of the biological nature of distress from clinicians can be liberating, but it does not follow that alleviating distress must always result from individual treatment. In this context, care must be taken to alleviate acute symptoms, but encourage long-term adaptation of the individual's environment, developing self-awareness and agency over home situations and work. Psychosocial support referral should accompany pharmacological treatment; a multi-disciplinary approach is recommended. At work for example, occupational physicians specifically can advocate for neurominority inclusion with employers, by liaising with human resources and occupational psychologists to systemically improve environmental compatibility in building, schedule and work-station design accommodating assistive technology, sensory overwhelm, the need to move and reducing social anxiety.

Research avenues

The dearth of research about the occupational implications of neurodiversity is less of a gap, and more of a 'blind spot'. 110 Medical research could support the development of evidence-based practice in employment by incorporating long-term outcomes into treatment and diagnostic studies. Including dependent variables such as formal education, salary, hours of employment, job satisfaction and career attainment will provide occupational psychologists with much-needed data on inclusion and adjustment effectiveness. Collaborations with multi-disciplinary occupational health teams are required to improve our understanding of what works, for whom and when. A Realist methodology 111 within a 'Pragmatic Paradigm' 112 can embrace the biopsychosocial model and enable us to provide better advice to individuals and employers. There is an opportunity to make a real difference to the lives of many and improve health outcomes through social inclusion using a neurodiversity focus.

Conclusions

From within an emerging paradigm, clinicians and researchers must appreciate the shift in discourse regarding neurodiversity from an active, vocal stakeholder group and embrace new avenues for study and practice that address practical concerns regarding education, training, work and inclusion. This article has provided an overview of the neurodiversity employment picture; namely high percentages of exclusion juxtaposed against a narrative of talent and hope. Understanding the importance of nomenclature, sensory sensitivity and the lasting psychological effects of intersectional social exclusion is key for physicians wanting to interact confidently and positively with neurominorities. The proposed biopsychosocial model allows us to provide therapeutic intervention (medical model) and recommend structural accommodation (legislative obligation) without pathologization (social model). In other words, we can deal pragmatically with the individuals who approach us and strive for the best outcomes, given their profile and environment. It is acknowledged that, by focusing on the main four developmental neurominorities to the exclusion of others, some nuance is unexplored, though the main principles herein can be applied more broadly. Summarized above are adjustments representing current best practice, though the need to assess and evaluate these beyond description and cross-sectional studies is highlighted. The neurodiversity phenomenon is coming of age and will begin to translate into public policy and education as well as employment. Medical and social scientists are uniquely placed to support an ambitious inclusion agenda through rigorous evaluative research partnerships.

# data[].attributes.attachment_link.title
Neurodiversity at work: a biopsychosocial model and the impact on working adults

# data[].attributes.attachment_link.description
Neurodiversity has become a popular concept at work and is increasingly popular within the business press, following the promotion of targeted inclusion programs from famous companies such as SAP, Virgin and Microsoft 1 as well as the worldwide docuseries 'Employable Me'/The Employables'.

# data[].attributes.headline
The Buckland Review of Autism Employment: Report and recommendations    

# data[].attributes.subject
The Buckland Review of Autism Employment: Report and recommendations    

# data[].attributes.attachment_link.title
The Buckland Review of Autism Employment: Report and recommendations

# data[].attributes.attachment_link.description
The Buckland Review of Autism Employment was launched in April 2023. This report contains the evidence the review team gathered and recommendations for action.

# data[].attributes.headline
Finding a niche: “It took a long time but he finally found a role” 

# data[].attributes.subject
Finding a niche: “It took a long time but he finally found a role” 

# data[].attributes.attachment_link.description
This website is using a security service to protect itself from online attacks. The action you just performed triggered the security solution. There are several actions that could trigger this block including submitting a certain word or phrase, a SQL command or malformed data.

# data[].attributes.headline
Intersectional stigma for autistic people at work 

# data[].attributes.subject
Intersectional stigma for autistic people at work 

# data[].attributes.attachment_link.readable_text
[Image is of a modern workspace with four people sitting in a meeting]

I was reading a post from an employer on LinkedIn today who was discussing the influx of job applications his company had received lately. Reading some of the quite ableist-seeming comments from his readers left me feeling a little sad. Then I stopped, remembered, and reflected on my own recruitment practices of days gone by...

As a leader and, later, HR Practitioner, I've done my fair share of recruitment. In the early days, I recall being a stickler for the "Rules" that I deemed important in order for a person to progress through the process. These included:

1. Were the application instructions followed to a T? No? They can't follow instructions, they're not for me.

2. Were there typos or poor grammar in the cover letter or CV? Yes? Gone - they have no attention to detail.

3. Did the CV evidence short periods of employment and employment gaps? Unreliable, I'm not interested.

4. In the interview - did they look me in the eyes? No? Untrustworthy.

And on it went. These are examples of the "known" list I had, it doesn't even take into account some of the subconscious bias that may have been involved!

As professionals, we're constantly learning. Looking at recruitment through the lens of Neurodiversity, we know so much more now, which allows us to do better.

Through this lens, not one of the examples outlined above would result in an instant "no". For instance:

1. Application instructions - were they accessible?

2. Typos & poor grammar - what is the role the person's applying for? Are top-notch spelling and grammar essential skills for this role? Evidence shows, for example, that those who are Dyslexic bring (among other things) entrepreneurial skills, innovation, and creativity. Are we dismissing the best in the talent pool for this role because we're worried about a spelling mistake or two?

3. A "spotty" work history: research shows, and anecdotally we know, that this can be a challenge for some of our neurodivergent colleagues. There are many reasons for this, one of them is due to organisational systems that are designed to meet the needs of Neurotypical employees only (which is a much smaller number than we realise!).

4. Holding people to certain body language standards can be "othering". For some people, eye contact is not a natural or easy thing - the conscious effort required to do this can result in difficulties focusing on and processing the conversation being held, while for others, it is physically painful to do.

It's fantastic to see those organisations that embrace truly inclusive recruitment practices and in so doing, access a much wider net of outstanding talent.

I'd love to hear how others are evolving their recruitment practices to remove those barriers to employment!

# data[].attributes.attachment_link.title
Inclusive Recruitment - when we know better, we do better.

# data[].attributes.attachment_link.description
Image is of a modern workspace with four people sitting in a meeting] I was reading a post from an employer on LinkedIn today who was discussing the influx of job applications his company had received lately. Reading some of the quite ableist-seeming comments from his readers left me feeling a little sad.

# data[].attributes.attachment_link.title
One of our 2030 Goals: Employment | Autistica

# data[].attributes.attachment_link.description
Find out more about our goal to see the employment rate for autistic people double by 2030

# data[].attributes.headline
The workplace masking experiences of autistic, non-autistic, neurodivergent and neurotypical adults in the UK

# data[].attributes.subject
The workplace masking experiences of autistic, non-autistic, neurodivergent and neurotypical adults in the UK

# data[].attributes.attachment_link.readable_text
Amber Pryke-Hobbes,

Jade Davies,

Brett Heasman,

Adam Livesey,

Amy Walker,

Elizabeth Pellicano,

Anna Remington

Subject Areas

For more information about PLOS Subject Areas, click here.

We want your feedback. Do these Subject Areas make sense for this article? Click the target next to the incorrect Subject Area and let us know. Thanks for your help!

Abstract

Masking entails hiding or concealing one's traits during social interactions. Research suggests that masking is particularly common for autistic people, though many non-autistic people also conceal aspects of their identity. Existing research has identified the key motivations and consequences of masking. No research to date, however, has considered how this might be affected by the social context in which masking is employed. This study compared the masking experiences of 285 autistic, 88 non-autistic neurodivergent and 99 neurotypical adults within a context in which masking is expected to be highly prevalent, namely the workplace. We used reflexive thematic analysis to explore the motivations, consequences, and contextual differences of workplace masking compared to other social contexts. Workplace masking was considered by participants in all three groups to be an adaptive response to a range of socially grounded workplace challenges and was usually employed as a strategy to safeguard against the threat of negative social and employment outcomes. Our non-autistic neurodivergent and autistic participants, however, reported experiencing unique pressures to mask, given the limited understanding of neurodiversity in workplaces and society more broadly. These findings have important implications for the wider masking literature and for workplace practice.

Citation: Pryke-Hobbes A, Davies J, Heasman B, Livesey A, Walker A, Pellicano E, et al. (2023) The workplace masking experiences of autistic, non-autistic neurodivergent and neurotypical adults in the UK. PLoS ONE 18(9): e0290001. https://doi.org/10.1371/journal.pone.0290001

Editor: Janet E. Rosenbaum, SUNY Downstate Health Sciences University, UNITED STATES

Received: April 1, 2022; Accepted: July 31, 2023; Published: September 6, 2023

Copyright: © 2023 Pryke-Hobbes et al. This is an open access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.

Data Availability: Data cannot be shared publicly as individuals who participated in the current research disclosed potentially identifying and sensitive information, including specific details about their job role, employer organization and colleagues. To avoid contravening any ethical restrictions the authors are willing to make parts of the non-sensitive, non-disclosive data available upon request from the authors who will work with the Institute of Education's Faculty Research Ethics Committee to provide an anonymized dataset. They can be contacted by email: ioe.researchethics@ucl.ac.uk. However, the authors have made a selection of anonymized qualitative data excerpts available in the Supporting Information of this submission ( S1 Table. Table of Quotes).

Funding: The present study was funded by an Autistica research grant (REF: 7263) to AR and BH ( https://www.autistica.org.uk/). Research at the UCL Centre for Research in Autism and Education is supported by Pears Foundation ( https://pearsfoundation.org.uk/). The funders had no role in study design, data collection and analysis, decision to publish, or preparation of the manuscript.

Competing interests: The authors have declared that no competing interests exist.

Introduction

The Office for National Statistics [ 1] estimates that only 52.1% of disabled 16-64-year-olds in the United Kingdom (UK) are in paid employment, compared to 81.3% of their non-disabled counterparts. For autistic adults, this statistic is even lower, with a mere 21.7% reportedly in paid employment, the lowest of all disability categories [ 1]. This disparity in employment rates reflects the ongoing unemployment crisis in the UK for autistic adults. Employment has demonstrable benefits on autistic adults' wellbeing, including an improved sense of purpose, quality of life, and physical health [ 2- 4]. Given the prevalence of mental health conditions in the autistic population [ 5], greater efforts must be made to address this employment gap.

Notwithstanding that both employers and autistic employees recognise the desirable qualities that many autistic individuals offer in the workplace, such as reliability, creativity, and integrity [ 6, 7], autistic adults continue to face a plethora of barriers in the search for paid employment [ 8- 11]. One such barrier identified in recent research [ 8] is the stigma associated with autism-a barrier that more than 80% of autistic participants reported as challenging to overcome. Stigma, as defined by Goffman [ 12], refers to the social discrediting of individual or group attributes, resulting in individuals feeling unaccepted and rejected. Extant research investigating such attitudes in the UK indicates that autism-related stigma remains highly prevalent. For example, in a study by Wood and Freeth [ 13] in which non-autistic students (n = 42) were asked to rate how positive or negative stereotypical autistic traits were on a 7-point Likert scale, 80% of presented traits were reported to be perceived negatively.

For autistic adults who secure employment, research suggests that the stigma associated with being autistic persists as an employee [ 14- 16]. As a result, once in employment, autistic employees are faced with the complex decision of whether to disclose their diagnosis to employers and colleagues. Indeed, many autistic employees are deterred from disclosing that they are autistic out of fear of being stigmatised by employers and colleagues [ 14, 16- 20]. Research by the National Autistic Society [ 15] indicates that this fear is not unfounded: more than half of autistic employees report being the recipient of workplace discrimination or bullying as a result of being autistic [ 15].

While disclosing one's autistic status has been associated with negative stigma-related outcomes [ 14- 16, 21], research from outside of the employment field indicates that this label may not solely account for the stigmatisation of autistic people [ 22- 24]. Specifically, studies have identified autistic people's social communication behaviours during social interactions as a key source of stigma [ 9, 22]. Initial research by Sasson and Morrison [ 24] found that first impressions of autistic adults, when rated by observers who were unaware of their diagnostic status, were less favourable than those of non-autistic adults, with observers perceiving autistic adults to be less approachable and more awkward than non-autistic adults. While non-autistic people's first impressions were less negative in conditions where autistic adults' autism diagnosis was disclosed [ 24], negative social evaluations of autistic adults appear to have adverse implications for future intentions, with non-autistic observers reporting that they would be less likely to initiate a conversation or pursue a friendship with an autistic adult [ 25]. Autistic employees' reports of their experience in the workplace mirror this sentiment, detailing that differences in communication styles can be a barrier to making friends at work [ 26, 27].

To avoid the negative social evaluations that stem from autism-related stigma, many autistic adults report employing arduous masking strategies [ 28- 30]. Masking, also referred to in the autism literature as camouflaging, can be defined as the conscious or unconscious suppression of natural responses, accompanied by the adoption of alternative responses, across domains such as social interaction, sensory experience, cognition, movement, and behaviour [ 31]. In line with the preferences of the autistic community [ 32], we use the term masking, rather than camouflaging, throughout this paper. Yet, masking is not a strategy employed exclusively by autistic people [ 33]. People's attempts to present themselves in ways that are acceptable to others, even to the detriment of their own well-being, have been acknowledged in sociology since at least the early post-war years [ 34]. Sociological research has also often connected these strategies to the deep structural injustices that blight the lives of a series of demographic groups. For example, attention has been paid to the practice of 'passing' in the African American population, especially during the period before civil rights, whereby individuals intentionally sought to convince others that they were of a different racial identity in order "to adopt specific roles or identities from which [they] would otherwise be barred by prevailing social standards" [ 35].

As with the case of racial injustice, the existing literature suggests that autistic masking is strongly motivated by the desire to avoid or compensate for autism-related stigma. Accordingly, a study involving 223 autistic adults found that self-reported masking behaviours were positively predicted by the degree to which participants perceived their autistic identity as stigmatised [ 36]. Participants' masking behaviours were also associated with using individualistic (dissociating from other autistic people) and collective strategies (positively 'redefining' autistic people compared to non-autistic people) to circumvent the stigma associated with being autistic [ 36]. The authors explain this relationship between stigma and masking through the lens of Social Identity Theory [ 37]. On this account, to avoid the stigma associated with the autistic identity, individuals endeavour to obtain membership in a higher-status out-group by adopting the behaviours and traits of that group. In the case of autistic masking, to be accepted within neurotypical social groups, autistic people adopt behaviours associated with a neurotypical identity and conceal behaviours associated with their autistic identity. However, autistic people may also engage in collective strategies, such as joining the autistic rights movements, in order to positively re-conceptualise the perception of autistic people (in-group) compared to the neurotypical population (out-group) [ 36]. Although such identity shifts can enable autistic people to 'fit in' [ 28] and increase social contact [ 29], masking often has deleterious effects on one's wellbeing [ 30, 38- 40]. Accordingly, autistic adults who regularly mask are at an increased risk of experiencing symptoms of depression, anxiety, and lifetime suicidality [ 28, 41].

To understand better the adverse health consequences sometimes associated with masking, we need to consider the contexts in which these strategies are employed. In the only study to our knowledge to have explored the correlational effects of masking across social contexts, Cage and Troxell-Whitman [ 28] found that masking-both consistently and frequently across different social contexts as well as in some social contexts but not in others-was associated with a greater likelihood of stress in autistic participants than masking infrequently. Given the cross-sectional nature of this study [ 28], however, eliciting people's subjective experiences of masking in particular contexts may reveal greater insights into the nuances in the relationship between masking and mental health. The current study therefore aims to examine the subjective experiences of masking within a context in which masking may be particularly salient-namely the workplace. Since existing research indicates that masking is particularly prevalent in formal social contexts, such as in the company of colleagues and employers, and significantly motivated by employment-based goals [ 28], we expect that an investigation of masking within this context is likely to reveal core experiences, motivations, and consequences associated with this behavioural strategy.

In the current study, we compared the first-hand workplace masking experiences of autistic, non-autistic neurodivergent and neurotypical adults, to (1) identify which experiences, if any, may be unique to a particular group and (2) establish how masking in the context of the workplace may differ from masking in other contexts. Neurodivergence refers to individuals with a different neurology to that of the general population [ 42]. Examples of neurodivergence include autism, dyslexia, dyspraxia, and attention deficit hyperactivity disorder [ 43, 44]. For the purpose of this study, the term (non-autistic neurodivergent) relates to individuals who reported a formal or self-diagnosis of a neurodivergent condition (excluding being autistic) or a mental health condition. The grouping of participants in this way is not intended to suggest that being autistic is, or should be, distinguished from other neurodivergent conditions; nor is it intended to suggest that neurodivergent people can be conceptualised as one homogenous group. Nonetheless, by grouping the sample in this way, we can explore similarities and differences between different groups' experiences of workplace masking. Moreover, despite ongoing discourse surrounding whether mental health conditions should be included under the umbrella of neurodiversity, we believe that the common stigmatisation of this group renders it appropriate to consider the experience of these conditions alongside other forms of neurodivergence [ 42, 44, 45].

Methods

This study forms part of a broader research initiative exploring employment experiences in the UK using a bespoke survey: the Diverse Minds Survey. The Diverse Minds Survey was open between February 2019 and October 2021 and invited participants to complete a series of optional questionnaires or 'modules' regarding different aspects of employment, including workplace masking. To take part, participants needed to be aged at least 18 years and have experience of employment, or job-seeking, in the UK. Participants were recruited through three channels: ( 1) a social media callout; ( 2) the Autistica research network-a network of autistic people in the UK interested in participating in autism research, and ( 3) organisations that registered their interest in understanding more about neurodiversity and employment. The call for recruitment invited adults (aged 18 years and above) to take part in a study exploring (1) neurodivergent experiences in the workplace; (2) how neurodivergent workplace experiences compare to those without any diagnosis, and (3) experiences of enabling employment practices for everyone (i.e., neurodivergent and neurotypical people).

Participants

A total of 581 participants navigated to the survey on workplace masking. Participants were classified into one of three groups based on their self-reported (clinical or self) diagnoses: (1) autistic ( n = 300); (2) non-autistic neurodivergent (i.e., those who reported a neurodevelopmental condition other than being autistic or a mental health condition) ( n = 109) and (3) neurotypical (i.e., those who reported no neurodevelopmental or mental health condition) ( n = 172). Participants were excluded from the analyses if they did not respond to any of the questions on workplace masking. In total, 9.0% of the autistic sample (n = 27), 26.6% of the non-autistic neurodivergent sample ( n = 29), and 65.1% of the neurotypical sample ( n = 112) were excluded. Of the excluded participants, 92 (54.8%) indicated the questions on workplace masking were not relevant to them. There were no significant differences between non-autistic neurodivergent participants who did complete the survey, and non-autistic neurodivergent participants who did not. Similarly, there were no significant differences between neurotypical participants who did complete the survey, and neurotypical participants who did not. Fisher's Exact Tests indicated autistic people who chose not to complete the questions on workplace masking were more likely to be male (p = .016), unemployed and looking for work (p = .013) and dissatisfied with their current employment status (p = .011).

The final sample comprised 411 participants: 272 autistic, 78 non-autistic neurodivergent, and 61 neurotypical adults (see Table 1). In recognition of the persistent challenges in accessing adult diagnostic services [ 46, 47] both clinically and self-identified autistic adults were included. The majority of the autistic participants ( n = 224, 82.4%) reported having a clinical diagnosis, with the remainder ( n = 48, 17.6%) self-identifying as autistic. There were few significant differences in the demographic information between clinically-diagnosed and self-diagnosed autistic participants. The exceptions to this pattern were that formally diagnosed participants were significantly more likely to report being from a white ethnic background (Fisher's Exact Test, p = .006), and a greater degree of satisfaction with their employment status (Fisher's Exact Test: p = .041), than self-diagnosed autistic participants. Given that group differences were limited, clinically diagnosed and self-identified autistic participants are considered together.

Just over half of autistic ( n = 163 of 272, 59.9%) and non-autistic neurodivergent ( n = 43 of 78, 55.1%) participants identified as women, while just under half of neurotypical participants ( n = 27 of 61, 44.3%) identified as women. Fisher's Exact Tests showed there were significantly more women in the autistic group than the neurotypical ( p < .001) and non-autistic neurodivergent ( p = .002) groups. Across the whole sample, there was a notable lack of ethnic/racial diversity. Specifically, 79.8% of autistic participants ( n = 217 of 272), 90.9% of non-autistic neurodivergent participants ( n = 70 of 78), and 86.9% of neurotypical participants ( n = 53 of 61) reported being of a white British ethnic background. The majority of autistic participants ( n = 234, 86.0%) reported a co-occurring condition, with anxiety ( n = 100 of 234, 42.7%), unique sensory processing ( n = 52 of 234, 22.2%) and ADHD ( n = 35 of 234, 15.0%) being the most common. The most common diagnoses within the non-autistic neurodivergent sample included anxiety ( n = 25 of 78, 32.1%), depression ( n = 19 of 78, 24.4%) and dyslexia ( n = 13 of 78, 16.7%).

Just over one third of autistic participants ( n = 102 of 272, 37.6%) were in full-time employment compared to most non-autistic neurodivergent ( n = 53 of 78, 67.9%) and neurotypical participants ( n = 49 of 61, 80.3%). Significantly more neurotypical participants were in full-time employment than both autistic ( p < .001) and non-autistic neurodivergent ( p < .001) participants. More non-autistic neurodivergent participants were in full-time employment than autistic participants ( p < .001). Neurotypical participants had a higher earning power than autistic ( p < .001) and non-autistic neurodivergent ( p < .001) participants, while non-autistic neurodivergent participants had a higher earning power than autistic participants ( p < .001).

When asked if they were satisfied with their employment status, less than half of the autistic participants reported they were ( n = 121 of 272, 44.5%), compared to more than half of the non-autistic neurodivergent participants ( n = 42 of 78, 53.8%) and the majority of the neurotypical participants ( n = 52 of 61, 85.2%). Significantly more participants in the neurotypical sample reported being satisfied with their employment status than in the autistic ( p < .001) and non-autistic neurodivergent ( p < .001) samples. See Table 1 for further group comparisons.

Materials

The current study used a bespoke questionnaire, presented as part of the Diverse Minds Survey, a UK-wide online survey exploring the employment experiences of autistic adults. The Diverse Minds survey was created as part of Discover Autism in Research and Employment, a collaborative project between the UCL Centre for Research in Autism and Education and the UK autism research charity, Autistica.

All participants completed a section at the beginning of the survey on their demographic and employment data. This section contained questions regarding the participants' gender identity, age category, ethnicity, and highest level of education as well as more employment specific questions (e.g., employment status, income, satisfaction with employment status, number of different employers). Participants were then presented with a number of survey modules on different topics in employment (e.g., see [ 18, 48, 49]). Participants in the present study completed the survey module on workplace masking experiences. This section of the survey opened by defining workplace masking as "a term that describes the strategies people use to fit in at their workplace" and provided examples of masking strategies. The definition of masking provided was deliberately narrow to ensure participants focussed on experiences of masking in the workplace, as opposed to masking in other contexts. Example masking strategies included references to individuals' management of their appearance, social interactions, and/or natural behaviours in a workplace setting. Participants were asked a number of (quantitative) questions related to workplace masking followed by a series of open questions probing for information regarding (1) perceived motivations for masking, or not masking, in the workplace; ( 2) perceived advantages and disadvantages of workplace masking; and ( 3) ways in which masking in the workplace may differ to masking in other contexts. The current paper focusses on the qualitative responses from the open questions only. See Supplementary Materials for full list of survey questions.

Procedure

Participants were provided with a link to the survey, hosted on Qualtrics. Here, participants provided informed consent and responded to a series of demographic and employment-related questions. Subsequently, participants were given the option to answer any of the seven modules of the survey that were relevant to them, one of which was on masking. The masking module took participants approximately 20 minutes to complete. Participants received no monetary or other compensation for their contribution to the research. Ethical approval for the study was granted by the UCL Institute of Education Ethics Committee (REC1149).

Data analysis

Open-text data were uploaded to NVivo [ 50] software and analysed within an essentialist framework (reporting participants subjective reality, meaning, and experience) using thematic analysis [ 51, 52]. We employed an inductive approach was employed whereby codes and subsequent themes were generated according to the content of the data. Data analysis was led by the first author who immersed themselves in the data by reading and re-reading the responses. Patterns from autistic participants were identified and data extracts were assigned initial codes. Codes were subsequently reviewed and organised into themes and sub-themes, with support from A.R. Two authors (A.P.H & J.D) independently coded the responses from non-autistic neurodivergent and neurotypical participants against the same coding framework, in order to identify similarities and differences in responses. A.P.H and J.D. met to discuss the fit of the coding framework for these data, resolve any discrepancies, and agree on the final set of codes and, subsequently, themes and sub-themes. A diverse group of non-autistic neurodivergent, autistic and non-autistic colleagues agreed on the final set of themes and sub-themes present across the dataset.

Findings

We identified eight themes from the qualitative data (see Fig 1). There was much overlap between the themes identified in the autistic, non-autistic neurodivergent and neurotypical datasets; the qualitative results are therefore presented together, below, and group differences are highlighted in the text with illustrative quotes. All quotes are accompanied by a participant ID indicating whether they are autistic (A), non-autistic neurodivergent (ND) or neurotypical (NT).

Theme 1: The value of openness

Theme 3: Avoiding discriminatory and prejudicial treatment

3.4 An insufficient understanding.

A lack of knowledge about neurodiversity amongst colleagues and managerial staff meant that autistic and non-autistic neurodivergent participants felt that masking was necessary to avoid "embarrassing conversations" (A-265) in the workplace. Indeed, masking was used by several participants as a strategy to avoid the burden of educating colleagues and employers about their neurodivergent experience:

I mask because I do not feel comfortable explaining my condition to people. The general perception of ADHD is that it is 'just' hyperactivity, and since this is not one of my main symptoms I find people can be dismissive or struggle to understand (ND-097).

As a result, many participants highlighted a need for colleagues and employers to learn more about neurodiversity, though an absence of open discussion in the workplace made that difficult: "I feel that my condition is known but never explicitly mentioned. This precludes any discussion of how it manifests and its impact on my daily life" (A-385). In addition, some autistic participants felt that while their organisation purported to support their autistic employees, this was often not translated into practice: "Despite working for an organisation that supports autistic people, I do not feel confident that they would understand" (A-330).

Theme 4: Better employment outcomes

Theme 8: A widespread phenomenon

Discussion

To our knowledge, this is the first study to examine the workplace masking experiences of autistic, non-autistic neurodivergent and neurotypical adults. Our findings suggest that masking strategies are employed widely within the workplace by both neurodivergent and neurotypical employees. As such, our findings challenge popular definitions of masking that frame it as a strategy employed exclusively by autistic individuals [ 28, 29, 53; though see 30]. Rather, we present findings that indicate masking might be more accurately defined as a common experience among many non-autistic neurodivergent, and to some extent, neurotypical individuals. Indeed, the comparative nature of this study allowed us to identify a range of qualitative similarities and nuances in the workplace masking experiences of the three groups. For example, there was overlap in participants' reasons for masking in the workplace, as well as their perceptions of the advantages and disadvantages of masking in this context. There were also, however, critical aspects of workplace masking that distinguished the experiences of our autistic and non-autistic neurodivergent participants from those of our neurotypical participants. For example, while autistic and non-autistic participants reported being motivated by many of the same goals as neurotypical participants, they also reported masking as a means by which to compensate for the lack of knowledge and awareness that others possessed about both being autistic but also about being neurodivergent more broadly. Moreover, when discussing masking itself, autistic and non-autistic neurodivergent participants reported unique challenges when attempting to suppress stimming behaviours and sensory sensitivities while at work. Next, we discuss our findings in relation to existing research and provide recommendations for how employers can support their employees who mask at work.

Our participants identified two key motivators for masking in the workplace. First, they highlighted the importance of social goals such as fitting in and making social connections with colleagues. While this finding could have been influenced by the given definition of masking (i.e., that it encompasses different strategies used to fit in), this finding is consistent with existing literature pertaining to the motivations for autistic and non-autistic masking (e.g., [ 28, 29, 33]). Importantly, autistic participants' use of masking strategies to form and sustain relationships with their colleagues also challenges conventional assumptions that autistic people do not desire social relationships (see, for example, [ 54, 55]). While participants in all groups expressed a desire to integrate successfully in the workplace, autistic and non-autistic neurodivergent participants reported unique concerns regarding the potential ostracism that they would face if they did not mask in the workplace. Indeed, both autistic and non-autistic neurodivergent participants expressed that an insufficient understanding of neurodiversity in the workplace further exacerbated the perceived pressure to mask in this context.

The second key motivator for workplace masking, common to all participant groups, was centred around a desire to gain and sustain fruitful and meaningful employment. In fact, our participants felt that masking was integral to successfully obtaining employment, fulfilling professional responsibilities, and developing professionally. Taken together, it can be considered that masking was employed as an adaptive response to a range of socially-grounded workplace challenges and was employed to safeguard against the threat of negative social and employment outcomes. This is in line with Goffman's notion of "passing for normal" [ 56], in which people use 'disidentifiers' or choose not to disclose 'discrediting information' about themselves in order to pass as another, more accepted identity. In the context of this study, participants reported hiding their autistic or non-autistic neurodivergent identity, or indeed traits that were perceived as less accepted, to pass as neurotypical, and thus afford more positive social interactions and successful employment outcomes such as gaining and sustaining employment, or 'climbing the ladder'.

Of course, individuals should not be expected to change who they are in order to succeed professionally-especially given the vast negative impacts masking can have on ones' mental and physical wellbeing [ 28, 30, 38- 41]. Instead, employers should endeavour to create an inclusive working culture in which employees feel confident to express their true selves, should they wish to. One way to develop such a culture may be through a programme of diversity and inclusion education which seeks to improve employees' understanding of both neurodiversity and workplace masking. Indeed, evidence suggests that improvements in knowledge are associated with lower levels of stigma and improvements in first impressions [ 24, 57- 59]. As such, training on neurodiversity, with a specific focus on workplace masking, could result in a more inclusive workplace culture in which individuals feel less pressure to mask at work. While such training is likely to be beneficial for all employees, preliminary research within the employment literature indicates that the delivery of neurodiversity training may be particularly effective when targeted at those in supervisory and managerial roles [ 60, 61]. Where possible, such training should also be co-produced with (autistic and non-autistic) neurodivergent individuals within the organisation, or with external neurodivergent collaborators, to ensure that they accurately represent the views and experiences of neurodivergent people and lead to meaningful change [ 62, 63]. Another, perhaps more cost-effective, method to distribute information organisation-wide may be to develop short, easy-to-read guides outlining the different reasons for which masking might be used (e.g., maintaining professionalism, building confidence in one's role, and/or avoiding stigma) and the possible consequences that masking may have for employees using these strategies. As the findings from both the current study and existing literature shed light on the potentially damaging effects of masking which include poorer mental health, increased stress and greater suicidal ideation [ 28, 39, 41], we hope that in educating organisations, both employers and colleagues will be better equipped adequately support those who mask at work. Future research should seek to evaluate the effectiveness of such materials.

As workplace masking was highly utilised in our sample, it is unsurprising that our participants highlighted a range of perceived advantages of masking in this context. Often, such advantages were grounded in the fact that masking enabled individuals to adhere to the social expectations and norms of the workplace. For many participants, these social expectations related to the specific context of the workplace. For example, some participants reflected that masking not only enabled them to appear professional in the company of colleagues, but also granted them with the confidence to better fulfil their roles. As a result of these workplace-specific factors, some participants did not report the need to mask in other social contexts. Yet, for other participants, the desire to conform with social expectations extended to contexts beyond that of the workplace, meaning they felt unable to unmask professionally or socially. Nonetheless, masking at work enabled participants to follow mainstream career paths and circumvent the stigma and discrimination to which they may otherwise be subject to.

Despite workplace masking being functionally adaptive, our findings also indicate that workplace masking can be associated with a range of negative consequences. For example, symptoms of extreme exhaustion, anxiety, and disconnection with one's identity were commonly reported as a consequence of workplace masking. While these findings are consistent with previous accounts of masking [ 29, 33], this study is the first to consider if the consequences of masking differ according to context. Indeed, the current results highlighted some phenomenological differences between participants' experience of workplace masking and masking in other contexts. For example, some participants reported that the professional standards expected of employees within the workplace allowed for masking strategies to be implemented with greater ease and confidence than was possible in social contexts. In contradiction such reflections, however, the current study also highlighted cases in which participants felt that the increased intensity and regularity of workplace masking, compared to masking in other contexts, resulted in more extreme exhaustion and faster burnout. In addition, a reduced feeling of control over the decision to mask in the workplace, compared to the decision to mask socially, was a common contextual distinction reported by participants. These critical contextual differences suggest that workplace masking may have more severe ramifications for individuals' mental health and wellbeing than masking in other contexts. While improvements in workplace culture may reduce the need to mask, it is unlikely that workplace masking can be entirely eliminated. As such, employers should seek to prioritise employees' mental health by providing adequate levels of mental health support within the workplace. This support could be offered in the form of employment benefits (e.g., access to occupational therapy, or private counselling), reasonable adjustments (e.g., by allowing employees to work from home where necessary) or by more internal means (e.g., distributing relevant mental health resources, via a company intranet page). Future work should seek to evaluate the support that is currently available for employees who mask at work.

Finally, our findings suggest that participants' ability to unmask in the workplace may, to some extent, be contingent on their diagnostic status. Indeed, participants who did not possess a formal diagnosis of a condition did not report experiencing the same freedom to unmask as participants with a formal diagnosis. Research with autistic adults supports this notion. For example, Lewis [ 64] reported that receiving a formal autism diagnosis during adulthood enabled participants to uncover previously hidden parts of themselves. Yet, requiring employees to possess a formal diagnosis to unmask in the workplace is problematic for several reasons. First, the process for obtaining some diagnoses (e.g., autism) can often be long, costly and fraught [ 44, 64]. As such, it may not be possible for all people to access a formal diagnosis. Second, freedom in this respect is contingent on disclosing one's diagnosis-something which many autistic and neurodivergent adults may not feel comfortable doing [ 18, 19]. Third, our results indicate that masking is not exclusively employed by individuals who are, or think they may be, neurodivergent or autistic. As such, organisations should endeavour to create a culture that embraces difference and supports employees regardless of their diagnostic status.

Limitations

There are several limitations to this study. First, it is important to note that our sample was self-selecting in nature. As such, it is possible that the participants in this study were those who were aware of their masking strategies and had an interest in sharing their experiences. Similarly, many, largely neurotypical participants, who indicated masking was not relevant to them, did not complete the survey. As such, we were unable to compare the experiences of individuals who do mask in the workplace with the experiences of those who do not. Of the neurotypical participants who were able to share their experiences of masking, we cannot be certain that their experiences reflect those of the wider neurotypical population, especially since our neurotypical respondents were likely to have prior awareness and knowledge about autism and/or neurodiversity owing to our recruitment strategy. In light of these sampling issues, future research comparing the masking experiences of different neurotypes should endeavour to recruit neurotypical participants with a range of knowledge about autism or neurodiversity.

Second, our sample is not likely to be demographically representative of the wider autistic, non-autistic neurodivergent or neurotypical populations. For example, given the nature of the data collection technique employed (an in-depth online survey), it is likely that some people with intellectual disability/ies were excluded, which means that we cannot speak to the workplace masking experiences of these individuals. In addition, there was an overrepresentation of individuals from a white British background across all groups. Given that research suggests that individuals from other minority ethnic groups experience unique pressures to mask aspects of their identity in the workplace [see, for example 64, 65], it is possible that our findings understate the workplace masking experiences of individuals from minority ethnic groups. As such, future research should seek to examine the workplace masking experiences of individuals from minority ethnic backgrounds to establish whether the findings from the current study are relevant for these groups. Similarly, asymmetries in the gender distribution between our autistic, non-autistic neurodivergent, and neurotypical groups raises potential concern regarding the validity of our cross-group comparisons. // Indeed, our autistic sample contained significantly more women than both our non-autistic neurodivergent and neurotypical participant samples. This is despite current estimates suggesting a 3:1 male to female ratio regarding autism diagnoses [ 66]. While the gender distribution pattern of autistic participants in the current study is not unusual for survey-based research (see for example [ 67, 68]), it is possible that the apparent differences in experiences of workplace masking across our groups were confounded by gender. Particularly, as previous research indicates that women tend to employ more masking behaviours than men [ 69- 72], comparisons including our autistic group may have been affected by the high proportion of women included in this sample. Regrettably, however, due to a lack of non-autistic neurodivergent and neurotypical participants who identified as non-binary in the current study, our sample was not sufficiently representative to run such gender comparisons.

Third, the definition of masking provided in the current survey may have limited the range of experiences shared by participants. Particularly, by specifying the purpose of masking to 'fit in' rather than as a broad set of behaviours suppressing one's natural responses, we may have failed to recruit participants for whom masking served a different function. Moreover, we did not ask our participants to define what workplace masking meant to them, which means we cannot be sure that the behaviours used to achieve the goals of workplace masking are comparable between different neurotypes. That said the commonalities in the experiences of workplace masking, especially in autistic and non-autistic neurodivergent participants, provide some confidence that their conceptualisation of workplace masking was similar. Nevertheless, future research should investigate the behavioural nuances in workplace masking between neurotypes to understand precisely how autistic and non-autistic neurodivergent people may be disproportiately affected.

Finally, we only examined the experiences of individuals with concealable stigmatised identities (including autism, other neurodevelopmental conditions and mental health conditions). As such, we cannot make any assumptions regarding the workplace masking experiences of individuals with visible differences (e.g., physical disabilities) based on our findings. While literature does suggest that individuals with visible differences engage in masking behaviours [ 73- 76], it is likely that these experiences differ somewhat to the experiences of individuals who are able to, to some extent, conceal their true identity. Future research may seek to compare the workplace masking experiences of individuals with concealable identities to those without concealable identities to establish whether their experiences differ.

Conclusion

This study identifies the contextual intricacies of masking in the workplace. While workplace masking was a common experience for autistic, non-autistic neurodivergent and neurotypical participants, masking in this context was not without its consequences. Indeed, many of our participants highlighted that workplace masking was a more frequent experience than masking in other contexts and was perceived to have more severe ramifications for their mental health. Our non-autistic neurodivergent and autistic participants reported experiencing unique pressure to mask, given the limited awareness of neurodiversity within workplaces and society more broadly. To improve experiences, we suggest that employers should endeavour to (1) foster an accepting working environment in which employees do not feel a pressure to conceal aspects of their identity using masking strategies, (2) provide frequent, comprehensive training on neurodiversity and masking, and (3) provide clear mental health support for all employees through means of occupational therapy, reasonable adjustments and/or internal mental health resources.

Acknowledgments

We would like to thank the participants for their invaluable contribution to this research. Research at CRAE is generously supported by Pears Foundation.

References

1. 12. Goffman E. Stigma: Notes on the management of spoiled identity. (3rd ed.). London: Penguin Books. 1990.

2. 37. Tajfel H., & Turner J. An integrative theory of intergroup conflict. In Hatch M. J.& Schultz M(Eds.), Organizational identity: A reader. Oxford: Oxford University Press. 2004.

3. 42. Chapman R. Defining neurodiversity for research and practice. In Neurodiversity studies 2020 Jun 2 (pp. 218-220). Routledge. https://doi.org/10.4324/9780429322297-21

# data[].attributes.attachment_link.title
The workplace masking experiences of autistic, non-autistic neurodivergent and neurotypical adults in the UK

# data[].attributes.attachment_link.description
Masking entails hiding or concealing one's traits during social interactions. Research suggests that masking is particularly common for autistic people, though many non-autistic people also conceal aspects of their identity. Existing research has identified the key motivations and consequences of masking.

# data[].attributes.headline
The foundations of Autistic flourishing 

# data[].attributes.subject
The foundations of Autistic flourishing 

# data[].attributes.attachment_link.title
The Foundations of Autistic Flourishing - Current Psychiatry Reports

# data[].attributes.attachment_link.description
Purpose of Review All people—including Autistic people—deserve to live flourishing lives. But what does a flourishing life look like for Autistic people? We suggest that the hidden biases, methodological errors, and key assumptions of autism science have obscured answers to this question. Here, we s…

# data[].attributes.headline
Autistic adults’ views and experiences of requesting and receiving workplace adjustments in the UK 

# data[].attributes.subject
Autistic adults’ views and experiences of requesting and receiving workplace adjustments in the UK 

# data[].attributes.attachment_link.readable_text
Jade Davies,

Brett Heasman,

Adam Livesey,

Amy Walker,

Elizabeth Pellicano,

Anna Remington

Subject Areas

For more information about PLOS Subject Areas, click here.

We want your feedback. Do these Subject Areas make sense for this article? Click the target next to the incorrect Subject Area and let us know. Thanks for your help!

Abstract

This article examines 181 autistic adults' views toward, and experiences of, requesting and receiving workplace adjustments in the UK. Using an online survey, we collected both qualitative and quantitative data relating to individuals' experiences. While the majority of participants perceived workplace adjustments to be important, many were not receiving them. Analysis of open-ended text responses highlighted specific challenges that autistic people face in requesting and receiving adjustments. Specifically, participants felt the onus fell on them to ( 1) identify their need for adjustments; ( 2) establish the specific adjustments that would be beneficial and ( 3) request adjustments from their employer. Yet, they reported struggling with this process. Participants also highlighted a range of social and organisational barriers to the successful implementation of workplace adjustments. Unsurprisingly, the lack of successfully implemented adjustments had far-reaching impacts on participants' wellbeing as well as the choices they made about their future employment. These findings highlight the need for employers to take a more active role in the identification and implementation of workplace adjustments, as well as a need for more understanding and inclusive working environments that truly allow autistic employees to thrive in the workplace.

Citation: Davies J, Heasman B, Livesey A, Walker A, Pellicano E, Remington A (2022) Autistic adults' views and experiences of requesting and receiving workplace adjustments in the UK. PLoS ONE 17(8): e0272420. https://doi.org/10.1371/journal.pone.0272420

Editor: Ewa Pisula, University of Warsaw, POLAND

Received: July 19, 2021; Accepted: July 20, 2022; Published: August 5, 2022

Copyright: © 2022 Davies et al. This is an open access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.

Data Availability: We did not gain consent from participants to share publicly any of the data they submitted in our survey. To avoid contravening any ethical restrictions we would instead be happy to make parts of the non-sensitive, non-disclosive data available upon request from the authors who will work with the Institute of Education's Faculty Research Ethics Committee to provide an anonymised dataset. They can be contacted by email: ioe.researchethics@ucl.ac.uk.

Funding: The present study was funded by an Autistica research grant (REF: 7263) to AR and BH ( https://www.autistica.org.uk/). Research at the UCL Centre for Research in Autism and Education is supported by Pears Foundation ( https://pearsfoundation.org.uk/). The funders had no role in study design, data collection and analysis, decision to publish, or preparation of the manuscript.

Competing interests: The authors have declared that no competing interests exist.

Introduction

Second, once adjustment needs have been identified, obtaining the desired modifications involves speaking up and negotiating with employers. The former involves employee voice: verbal or written communication in which an employee makes a choice about whether to speak up about their concerns [ 17]. Yet, speaking up about one's concerns involves a complex communication process [ 18]. For example, research with autistic employees suggests that many autistic people perceive diagnostic disclosure as a necessity in order to gain access to adjustments [ 19]. Yet, evidence from the broader disability literature suggests that diagnostic disclosure is contingent on the adoption of a disability identity [ 20]. This is problematic as the journey to developing a disability identity can be complex and lengthy [ 21], and may mean that those who do not have a strong autistic identity are discouraged from requesting the adjustments they require. Indeed, autistic employees often experience difficulties in social communication at work [ 22, 23] and, as such, even those with a strong autistic identity may find communicating their needs with their employers particularly challenging.

Furthermore, research on the factors associated with speaking up about safety concerns in organisational cultures suggests that the process is also contingent on a series of individual factors such as self-confidence and extraversion [ 24]. However, autistic people can be anecdotally shy, introverted and lacking in confidence [ 25, 26]. Indeed, autistic people have historically faced oppression [ 27] and, perhaps as a result, often experience internalised ableism-when disabled people internalise society's prejudices and act accordingly [ 28]. Consequently, autistic people may not possess the skills or confidence to approach an employer about their needs. This lack of confidence to approach employers about one's needs may be further exacerbated by additional group factors. For example, research suggests that the act of requesting adjustments can be perceived as confrontational by employers [ 29] and diagnostic disclosure can lead to autistic people being perceived as less helpful [ 30]. As such, autistic people may be reluctant to address their adjustment needs. Indeed, a recent systematic review examining autistic adults' experiences of requesting and receiving adjustments suggests that up to 50% of autistic employees do not request workplace adjustments [ 11]. This reluctance is not unfounded: research suggests that the process of negotiating workplace adjustments with employers can have dire consequences on employee wellbeing [ 31].

Third, when individuals are able to speak up about their needs, adjustments are not always successfully implemented. For example, a study examining the implementation of 'reasonable adjustments' across different disabilities in the UK found that 30% of requested adjustments were not implemented [ 32]. Similar figures are also seen in the US [ 33]. The literature on disability and workplace inclusion has suggested a range of potential social and organisational factors that contribute to the gap between adjustment requests and adjustment implementation. Suggested social factors include the characteristics of the individual requesting the adjustments and the impact of adjustments on others within the organisation [ 34, 35], while suggested organisational factors include the size of the organisation, workplace adjustment policies in place and the cost of the adjustment to the organisation [ 36- 38]. It is not known, however, whether (and how) these factors affect the implementation of workplace adjustments for autistic individuals specifically.

The current study, therefore, sought to establish the workplace adjustments autistic people require, and the barriers they face in requesting and receiving such adjustments. To address this aim, we gathered the first-hand perspectives of employees on the autistic spectrum using a short online survey. Listening directly to autistic adults themselves is crucial if research is to identify the factors that contribute to the successful implementation of adjustments. Indeed, research shows that when 'reasonable adjustments' are successfully and consistently implemented, outcomes are positive [ 42].

Methods

This study was part of a broader programme of research exploring autistic adults' employment experiences using the Diverse Minds Survey. The Diverse Minds Survey is an online survey that gathers information about neurodiversity and employment undertaken in the UK. The survey was developed in collaboration with autistic reviewers, as part of the Discover Autism Research and Employment (DARE) project, and was advertised through three main channels, including (1) Autistica's Discover Network for autistic people interested in taking part in research; (2) the research team's social media channels, and (3) invitations to organisations that had approached the project and expressed an interest in understanding more about neurodiversity and employment.

Participants

Participants in this study were autistic adults (over 18 years of age) based in the UK, with experience of employment. To be included in the present study, participants needed to (1) identify as autistic; (2) be currently, or previously, employed, and (3) have completed both the demographic survey and at least 50% of the module-specific survey on workplace adjustments within the Diverse Minds Survey.

When the data were extracted in March 2020, a total of 220 participants had navigated to the adjustments section of the Diverse Minds Survey, and were included in the final analyses. While the views and experiences of self-identified autistic employees are valid and important, few participants self-identified as autistic in our sample ( n = 12). Given that the legal right to 'reasonable adjustments' is often perceived to be associated with having a formal diagnosis, we expect the adjustment experiences of autistic individuals with a formal diagnosis, and those without, to be different. The small sample of self-identified autistic employees meant, however, that we were unable to make meaningful comparisons between the two groups and therefore chose to exclude self-identified participants. We will endeavour to explore the unique experiences of this group in future research, using a larger sample. An additional 27 cases were removed for not having reported any experiences of employment ( n = 12, 44.4%), not having completed the full demographics questionnaire ( n = 10, 37%), or not having completed at least half of the workplace adjustments module ( n = 5, 18.5%). The final sample comprised 181 participants. The sample was not representative of the wider autistic population. For example, the majority of the participants included reported being of a white ethnic background ( n = 153, 84.5%) and/or identified as female ( n = 108, 59.7%). All participants were aged between 18 and 75 years. The majority of participants were in full-time ( n = 69, 38.1%) or part-time ( n = 40, 22.1%) employment, or were self-employed ( n = 19, 10.5%). Table 1 reports full demographic information.

Materials

All participants that took part in the Diverse Minds Survey completed a general module providing demographic and employment information (e.g. employment status, number of previous employers, estimated income). Participants in this study also completed a module regarding their experiences of requesting and receiving workplace adjustments. The workplace adjustments module comprised closed-ended questions regarding (1) whether adjustments had been requested and/or implemented; (2) the type of adjustments requested; (3) participants' experience of discussing their adjustment needs, and (4) the perceived importance of workplace adjustments. Participants were also invited to answer open-ended questions about their personal experiences of adjustments, probing for what contributed to their success (or lack thereof) and what their perceptions were of the organisational decision-making process surrounding implementing workplace adjustments. See S1 File for a copy of the survey.

Procedure

Ethical approval was obtained through the Research Ethics Committee at UCL Institute of Education, Faculty of Education and Society (REC1149). All participants provided written consent to take part and the workplace adjustments questionnaire took approximately ten minutes to complete.

Quantitative data are presented descriptively ( n, %). Responses to the open-ended question "what examples have you experienced of successful or unsuccessful adjustments?" were analysed using qualitative content analysis [ 43]. JD independently coded the adjustments named in responses in alignment with those presented on the multiple choice question "what type of adjustments have you asked for?". JD then categorised these adjustments as either successful or unsuccessful, and generated a frequency table of responses. The remaining qualitative data were analysed using iterative categorisation [ 44] with a view to generate domain summary themes about autistic employees' experiences of workplace adjustments. BH conducted an initial analysis of the data, taking an inductive, open-coding approach (i.e., forming categories without a pre-existing coding framework) to segment the data. From the responses, it was clear that experiences extended beyond simply receiving adjustments, instead involving a more complex process around ( 1) identifying adjustment needs, ( 2) the implementation of adjustments and ( 3) the subsequent outcomes when adjustments are/are not successfully implemented. Accordingly, BH grouped the open codes together inductively to form three main categories, with relevant sub-categories, ensuring that every unit of data (i.e., every sentence about adjustment experiences) could be accounted for. JD also independently coded the responses according to the above categories and sub-categories, refining where necessary. All authors agreed on the final set of categories and sub-categories. Inter-rater reliability was high both at the category (k = 0.93) and subcategory (k = 0.81) levels.

Results

Quantitative results

Experiences of requesting and discussing adjustments with employers.

Despite the majority of participants perceiving workplace adjustments as extremely or very important ( n = 152, 83.9%), just over half ( n = 106, 58.6%) reported requesting them. Only a small minority of participants felt adjustments were not necessary for them ( n = 10, 5.5%). Encouragingly, of the 106 participants who had requested adjustments, 65 (61.3%) reported them being implemented. A sizeable number of other participants, however, had their adjustment requests either refused ( n = 27, 25.5%) or poorly implemented ( n = 14, 13.2%). Almost one-third of the participants ( n = 57, 31.5%) reported that they had not requested adjustments but felt that they would have been beneficial for them. A further five participants (2.8%) reported that they had not requested adjustments themselves but that their employer had suggested and successfully implemented workplace adjustments on their behalf. See Table 2 for a comprehensive breakdown of participants' experiences of requesting workplace adjustments.

Participants' experiences of discussing adjustments with employers were varied. Many participants felt able to discuss their needs either with a trusted colleague ( n = 69 of 151, 45.7%), with specific individuals they felt needed to know (e.g., Occupational Health) ( n = 4 of 151, 2.6%) or more freely within the whole organisation ( n = 26, 17.2%). Yet, almost one-third of the participants ( n = 47 of 151, 31.1%) reported feeling unable to discuss their adjustment needs. Five participants (of 151, 3.3%) reported trying to discuss their adjustment needs with an employer but receiving an unsatisfactory response, such as not being taken seriously or having the adjustments implemented incorrectly.

Types of adjustments requested.

The 106 participants that reported requesting adjustments also shared details regarding the types of workplace adjustments they requested (see Table 3). Of these participants, 78 (73.6%) reported requesting changes to the physical environment and equipment; 76 (71.7%) requested changes to their job role and supports, and 70 (66.0%) requested changes to social and cultural practices.

Of the 106 participants that indicated they had requested adjustments, 81 reported on their perceived success (see Table 4). The majority of those ( n = 54, 66.7%) reported on the success of adjustments to the physical environment. Over half ( n = 34, 63.0%) reported finding such adjustments successful, with access to new equipment and access to an allocated desk or office space being perceived as particularly successful. Forty-eight participants (59.3%) reported on the success of adjustments to their job role and accompanying supports. Of those, 41 participants (85.4%) reported finding such adjustments successful. Finally, 33 participants (40.7%) reported on the success of adjustments to social and cultural practice. The perceived success of these adjustments was mixed: 18 participants (54.5%) found them successful and 19 (57.6%) did not.

Diagnostic disclosure.

Although diagnostic disclosure was not the focus of this research, we also examined participants' experience of requesting and receiving workplace adjustments upon such disclosure. Of the 181 participants that took part in the current study, 160 (88.4%) responded to the Diverse Minds Survey module on diagnostic disclosure, with almost all ( n = 149 of 160, 93.1%) indicating that they had disclosed their diagnosis to at least one colleague. Of the 11 participants who chose not to disclose their diagnosis, only four (36.4%) had requested adjustments, with the remaining seven (63.6%) indicating that they had not requested adjustments but they might have been beneficial. Many of these participants ( n = 8, 72.7%) reported feeling unable to discuss adjustments with employers.

Qualitative results.

Data from the open-ended survey questions were organised into a series of subcategories that formed the basis of three main categories: ( 1) challenges in identifying adjustments; ( 2) perceived factors impacting the implementation of adjustments and ( 3) outcomes of poor implementation or refusal of adjustments. See Table 5 for a breakdown of each category.

Challenges in identifying adjustments.

Many participants reported challenges in identifying possible adjustments, which was perceived as a barrier to successful employment. Specifically, participants felt employers were unaware of employees' potential support needs, as well as the corresponding adjustments to address those needs: " No-one seems to actually understand sensory issues" (Participant 004; henceforth, P004). Participants felt this was a particular issue for autistic employees as: " the nature of a 'disability' being hidden allows for a person's challenges to be overlooked, leading to a lack of consideration [from employers] " (P056).

As a result of the perceived gaps in employer knowledge and understanding of workplace adjustments, autistic employees felt that " the onus was on me to identify what adjustments could be made" (P001). Yet, some participants reported difficulties in identifying their need for adjustments (" I haven't made many requests, because I didn't know I had a clinical reason for feeling uncomfortable"; P128) or the specific adjustments that may be particularly beneficial for them: " I find it difficult to pinpoint what adjustments or support I might need, and feel further guidance regarding this and what is available to help would be very helpful " (P151).

Perceived factors impacting the implementation of adjustments.

In cases where individuals were able to identify their support needs and appropriate corresponding adjustments, participants reported several barriers that they felt prevented adjustment requests from being successfully implemented. To begin, some participants did not feel comfortable disclosing their diagnosis, making it difficult to broach the subject of workplace adjustments: " I haven't disclosed so it's difficult to talk about asking for adjustments. I wish I could" (P112). Yet, even those that did feel able to communicate their need for adjustments faced challenges: "[my employers] were dismissive of my concerns and laughed when I was upset, saying it 'couldn't really be all that bad'. I felt they negated my experience and distress and invalidated and dehumanised me" (P154). Similarly, some participants reported facing stigma when asking for adjustments; for example, being " told I was trying to be a problem" (P117) and being " made to feel I am being really difficult " (P036).

Requesting and receiving reasonable adjustments were also perceived to be linked with employee identity and how individuals were perceived and valued by their employers and colleagues. For example, individual employee factors such as the perceived status of the employee (" could the person be replaced if adjustments cannot be met?"; P066) and the impact of the adjustments on others within the organisation (" will any changes have a detrimental impact on the other employees?") (P119) were commonly reported as impacting manager decision-making regarding adjustments.

Other, more external, factors were also perceived to influence the likelihood of adjustments being successfully implemented. For example, practical considerations were highly cited ( n = 90 of 121, 74.4%) and included resource factors such as cost, convenience and feasibility of adjustments: "[employers] own convenience and money" (P126). Participants also highlighted the impact of the individual receiving the request on the likelihood of adjustments being implemented: " It depends how knowledgeable, compassionate, bothered [management] are" (P002). Similarly, participants considered the social status of the organisation ("[employers consider] would doing the adjustments improve our image?"; P149) and their understanding of their legal obligations ("[employers consider] the law ... and potential discrimination claims "; P111) as important factors potentially impacting the implementation of adjustments.

Outcomes of poor implementation or refusal of adjustments.

Participants who successfully received workplace adjustments perceived them as beneficial: "[Before receiving adjustments], I would become irritated, overwhelmed and frustrated. The immediate moment ear defenders were offered, my productivity slowly improved" (P107). However, difficulties in successfully receiving workplace adjustments were not uncommon, with participants reporting they had to prove adjustments would be beneficial for their requests to be considered. For some participants, this involved seeking external guidance: " any adjustments were made several years after diagnosis and via evidence provided by an NHS Psychologist and Psychiatrist" (P080). Yet, regardless of whether they had been provided with this additional guidance, some participants reported that they were still refused their workplace adjustments or had their adjustments poorly implemented. Indeed, some participants noted that even if adjustments were implemented, they often had to continue to advocate to keep their adjustments ("[I was] given an allocated desk space but I had to fight for it back after it was taken away without warning"; P007), which was perceived to have major implications on employees mental health: " it wears away at me, corrodes my mind" (P143). In some cases, the lack of adjustments led to a termination of employment (" I have not had any unsuccessful adjustments provided, rather the refusal to accommodate my challenges altogether. This has either resulted in sick leave or quitting the job"; P056) and/or moving towards other, more sustainable forms of employment: " After years of losing jobs, I decided that the only way I can work is to be self-employed, I have never had a full time job where enough adjustments could be made to make the job sustainable for me" (P005). Other individuals reported being " managed out" (P001) of their employment or, in some cases, unfairly dismissed: " I asked if I could reduce my hours, work less people-facing and more admin based but was refused and ultimately fired for not being able to fulfil the role " (P103).

Discussion

Using a bespoke online questionnaire, we gathered the views and experiences of autistic adults requesting and receiving workplace adjustments. While the majority of participants in this study perceived workplace adjustments to be important, many reported not receiving them. Qualitative analyses highlighted the specific challenges that our participants faced when requesting and receiving adjustments. First, participants reported challenges in identifying both their need for adjustments and the specific adjustments that might best support them. Yet, even when they were able to identify their needs, many people reported facing additional barriers to the successful implementation of adjustments. These barriers included social barriers such as fear of disclosure, stigmatisation, the perceived status of the individual requesting adjustments and the impact of adjustments on others within the organisation. Other, more organisational, barriers to successful implementation included the availability of organisational resources, manager views and traits, and the social status of the organisation. Unsurprisingly, the lack of successfully implemented adjustments was perceived to have far-reaching impacts on the participants' wellbeing as well as the choices they made about their future employment. Here, we discuss how these findings relate to existing research and provide recommendations for future research and adjustment practices.

Participants in the current study felt that they would benefit from knowledgeable, understanding employers that could guide them through the process of requesting and receiving workplace adjustments. Unfortunately, this need for supportive employers was not often met, and employers were often perceived as unknowledgeable regarding workplace adjustments. As such, the onus fell on autistic individuals to ( 1) identify their need for adjustments, ( 2) specify appropriate adjustments and ( 3) make adjustment requests. This finding is in line with existing research from the US, suggesting that employees often have to "make the case" for their adjustments [ 13- 15]-something with which our participants clearly struggled, for several reasons. First, they were not always aware that they required adjustments. Second, those that were able to identify the need for adjustments were not always able to specify precisely which adjustments might be beneficial. This difficulty specifying adjustments coincides with research with individuals with visual impairments which found that employees are not always well-informed of their adjustment needs, the kinds of adjustments available and the process of requesting adjustments [ 15]. While these findings are not necessarily unique to autistic individuals, it is important to note that such barriers are likely to be exacerbated for autistic adults, who themselves often report experiencing additional communicative challenges [ 23]. Indeed, participants in this study reported specific challenges in making adjustment requests and many faced additional social barriers (e.g., stigmatisation) when they did request workplace adjustments.

In order to improve the experiences of autistic individuals requesting workplace adjustments, organisations should seek to promote a more inclusive workplace culture that embraces workplace adjustments. Based on our participants' responses, we suggest a two-pronged approach, involving (1) informing employers and (2) empowering employees. First, organisations should provide managers with training about the adjustments available within their organisation, and their benefits, as well as the protocol for implementing workplace adjustments. The provision of specific autism training to all non-autistic employees was also recommended by our participants, especially including autistic employees in the design and delivery of this training, and providing colleagues with relatable examples and information. Where possible, organisations should utilise materials that provide employees with relatable and memorable examples of autistic individuals' experiences and their potential need for adjustments (see, for example, [ 45]). Second, organisations should seek to empower employees to request workplace adjustments by providing them with clear guidance regarding the adjustments that are available, and how they can request them. This might include, for example, having a dedicated space on the company intranet containing examples of the adjustments available, and information regarding how employees can request adjustments. Similarly, organisations may seek to develop Disability Employee Resource Groups that can empower individuals to advocate for adjustments and ensure employees get equal access to workplace adjustments.

Many participants also noted challenges with the perceptions of others within their organisation. For example, autistic people often felt they were labelled as "troublesome" or "unreasonable" when they requested adjustments, with their employers not believing they had any genuine need for workplace adjustments. Yet, evidence suggests that individuals with physical disabilities do not face the same kind of stigma when requesting adjustments [ 46]. This may be a reflection of the fact that autism is a 'hidden disability' and as such is less likely to be picked up on, and understood, by employers [ 47]. As a result, many participants felt unable to request adjustments without disclosing a formal autism diagnosis. This finding is consistent with recent findings by Romualdez et al. [ 19], who found that disclosure was perceived as a necessity by autistic employees, as opposed to a choice (see also, [ 11]). However, the requirement to provide information about one's diagnosis in order to gain access to necessary workplace adjustments is problematic for several reasons. First, it excludes self-identifying autistic individuals from requesting, and thus receiving, the adjustments they need. Second, it creates a double-edged sword whereby autistic individuals are forced to make a choice between keeping their diagnosis private and gaining access to workplace adjustments. Disclosure may not be a goal for all autistic people and a truly inclusive workplace should not necessarily require individuals to disclose in order to receive the adjustments that they require. Instead, organisations should strive to be more active in their role of identifying, suggesting and providing workplace adjustments. One potentially less stigmatizing recommendation may be to provide all employees with information about the adjustments the organisation is willing and able to offer, as well as the tools and resources they need in order to make adjustment requests, regardless of their diagnosis or disability. Indeed, evidence from a recent study in China found that taking an identity-blind approach to workplace adjustments, that is providing all employees regardless of disability status equal access to workplace adjustments, had beneficial impacts for both disabled and non-disabled employees [ 48].

Finally, our findings outline a disparity between the number of individuals desiring, requesting and successfully receiving workplace adjustments. While more than 80% of our participants valued workplace adjustments, less than 60% reported requesting them, and more than one-third of those who had requested adjustments did not have them successfully implemented. This finding replicates those from other disability groups where approximately 30% of adjustment requests are not implemented [ 32, 33]. It is critical to understand why this implementation gap exists, in order to ensure that employees get access to the adjustments they need. This is particularly salient for autistic people, who face much higher unemployment rates than other disability groups [ 7]. Participants in this study provided insights into the factors they perceived to impact the implementation of adjustments, which largely mapped onto those that have been reported within the broader disability and workplace inclusion literature. These factors included organisational ones, such as the cost of adjustments to the organisation, and social ones such as the perceived status of the individual and the impact of adjustments on others (see for example, [ 34]). However, it is not yet clear whether any barriers identified, such as stigmatisation and manager traits, are unique to autistic individuals, or, more broadly, individuals with 'hidden' disabilities. Future research may seek to conduct a comprehensive review of the barriers and facilitators impacting the implementation of workplace adjustments, and identify any factors that are specific for autistic employees.

Limitations

This research is not without its limitations. First, it is important to note that this research was carried out prior to the outbreak of the coronavirus. As a direct result of the COVID-19 pandemic, employees across the globe have experienced changes in their working practices (e.g., more remote working, changes to working hours). As such, it is possible that experiences of requesting and receiving workplace adjustments have changed. For example, organisations may now be more receptive to implementing certain adjustments (e.g., flexible working) and some adjustments may have been enforced by Government, and thus not need requesting (e.g., remote working). Future research should seek to examine autistic employees' experiences of workplace adjustments in light of the COVID-19 pandemic.

Second, our sample may not be representative of the UK autistic population in two key ways. In regard to demographic representation, most of our participants were well-educated, female and reported being of white ethnic background and, as such, this research only represents a sub-group of the autistic population. The lack of cultural diversity is particularly noteworthy given that autistic people of colour may be multiply disadvantaged in the workplace, as minority ethnic groups often face additional workplace inequalities [ 49]. Future research should aim to address this imbalance by purposively recruiting autistic adults from more varied ethnic backgrounds; for example, by advertising in minority community groups. It is also noteworthy that participants were able to complete a comprehensive online survey which involved reflecting on their workplace experiences. As such, our sample may not represent the views and experiences of autistic people with an intellectual disability, or those who do not use traditional forms of communication. We also did not seek verification of our participants' autism diagnosis.

Regarding employment experience, almost three-quarters of our participants were in full-time, part-time or self-employment. While this is not consistent with estimates which suggest that as few as 22% to 32% of autistic adults are in paid employment [ 7, 50], this is likely due to the nature of the survey being based on employment experiences, thus discouraging those who are not employed from participating. Most of our sample also reported working within a medium-to-large organisation (i.e., organisations with 50+ employees). It is possible, however, that larger organisations have access to greater resources to devote to corporate social responsibility practices and policies and support the needs of their employees. Indeed, evidence suggests that larger organisations are more likely to implement workplace adjustments than smaller organisations [ 36]. It is therefore possible that our findings underestimate the experiences of autistic people who work in small organisations.

Finally, we were unable to recruit a large enough sample of self-identified autistic adults to include in the current research. Given the dearth of adult diagnostic services and lengthy waiting lists for those that do exist [ 51, 52], it is important to include the reflections of individuals that have not had access to a formal autism diagnosis in research. However, it is likely that these two groups, formally diagnosed and self-diagnosed autistic adults, have different experiences of requesting and receiving workplace adjustments as those that self-identify may not be afforded the same legal rights to adjustments as those with a formal diagnosis, or may not be able to provide evidence to their employers regarding the impact of their disability.

Given the limitations highlighted above, we make a number of suggestions for future research. First, it may be of interest to compare the adjustment experiences of non-autistic and autistic employees to establish which findings, if any, are unique to autistic people. Second, researchers may seek to examine the views and experiences of employers of autistic people and/or autistic people's colleagues, to triangulate the findings and thus gain a fuller understanding of the factors that impact the successful implementation of workplace adjustments for autistic people. Third, we suggest that future research should purposively seek the voices of self-identified autistic people to examine their specific adjustment experiences, and compare them with the experiences of autistic adults with a formal diagnosis (who do and do not disclose their diagnosis). Fourth, it will be important to examine the role of the size of the employment organisation in autistic people's experiences of requesting and receiving workplace adjustments.

Conclusion

Notwithstanding the limitations noted above, this study highlights the specific workplace adjustments that autistic people may be likely to request, the kinds of adjustments that they perceive as successful and unsuccessful, and the perceived barriers to their implementation. Importantly, we note that autistic individuals are often faced with the burden of identifying the need for adjustments, identifying the appropriate adjustments and finally requesting the adjustment from their employer. Employers must take a more proactive role in identifying, suggesting and implementing adjustments for their autistic employees, working in collaboration, as opposed to placing the burden solely on the employee. As part of such initiatives, organisations should move away from disclosure as a necessity and provide employees with the information, resources and tools they need to make informed decisions about adjustments, based on their individual needs as opposed to their diagnosis. Future research should review the barriers and facilitators to the successful implementation of workplace adjustments, and establish whether there are any factors unique to autistic employees.

Acknowledgments

We would like to thank all of the participants that contributed to this research.

# data[].attributes.attachment_link.title
Autistic adults' views and experiences of requesting and receiving workplace adjustments in the UK

# data[].attributes.attachment_link.description
This article examines 181 autistic adults' views toward, and experiences of, requesting and receiving workplace adjustments in the UK. Using an online survey, we collected both qualitative and quantitative data relating to individuals' experiences. While the majority of participants perceived workplace adjustments to be important, many were not receiving them.

# data[].attributes.headline
Autistic adults’ priorities for future autism employment research 

# data[].attributes.subject
Autistic adults’ priorities for future autism employment research 

# data[].attributes.attachment_link.readable_text
Publishing with Mary Ann Liebert, Inc. delivers end-to-end benefits from the time of submission through to publication and beyond.

We welcome the opportunity to work with you and your institution. Find everything you need to get the most out of Liebert journals in your library and to keep your collection up-to-date.

Liebert Open Access incorporates our open access journals, as well as open access articles published in our subscription journals. All content published by Liebert Open Access is freely available online for everyone to discover, read, and share.

Take your brand to the next level with custom publishing programs from Mary Ann Liebert, Inc., publishers.

# data[].attributes.attachment_link.description
Publishing with Mary Ann Liebert, Inc. delivers end-to-end benefits from the time of submission through to publication and beyond. We welcome the opportunity to work with you and your institution. Find everything you need to get the most out of Liebert journals in your library and to keep your collection up-to-date.

# data[].attributes.headline
Autism in the workplace an opportunity not a drawback 

# data[].attributes.subject
Autism in the workplace an opportunity not a drawback 

# data[].attributes.attachment_link.readable_text
Let's be frank: most of us find job interviews stressful. Being bombarded with questions by a stranger who holds your future career in his or her hands is a high-stakes situation that is unlikely to be pleasant. If you have been unemployed for any period of time, you will know from experience that the pressure to succeed mounts. "This could be make or break," you think to yourself, sweating anxiously in your scratchy shirt.

But imagine, for a moment, that you are also autistic. That you have trouble with social interaction, and that, while your friends and family might be understanding, strangers rarely are. On top of this, there's the pressure to answer questions honestly - but you're not sure how honest is too honest. Do you say that you got sacked from your last job because your social difficulties meant you weren't seen as a "team player"? Do you "come out" with your disability despite the fear that it might count against you? Everything from the brightness of the lights to the office background noise makes you feel completely overwhelmed. And then there's the fact that there are huge gaps on your CV that are difficult to explain without stating the truth, which is that workplaces are rarely geared towards people like you.

All this is highlighted by the National Autistic Society's new film, which shows an autistic man undergo a number of job interviews with managers who, mainly through ignorance, lack understanding and empathy about the challenges autistic people might face in a work environment. It's a stark and affecting piece of work that coincides with the launch of an NAS report into the autism employment gap. Just 16% of autistic adults are in full-time paid work, and only 32% are in some kind of paid work (obviously, some autistic people will be unable to work, but there are also many who would love to do so). The film raises some issues that go some way to explaining why this might be, while offering a much-needed reminder to employers that not everyone is cast from the same mould.

But it's not all negative. People on the spectrum may struggle with certain workplace activities and interactions, but increasing numbers of companies are recognising how recruiting "neurodivergently" - actively seeking out people whose brains could be said to be "wired" differently - can bring a whole range of skills and abilities to a workforce. GCHQ's neurodiversity programme is a prime example. Nurturing more than 300 neurodivergent employees, the programme recognises that people with autism, Asperger's, dyspraxia and dyslexia might have qualities that are deemed a strength rather than a condition. Such strengths might include anything from phenomenal logic and maths skills and a photographic memory to a "tunnel vision" approach to problem-solving, and many more talents in-between. While it's important not to get too preoccupied with what you might call Rain Man syndrome - the belief that all people with autism spectrum disorders (ASD) have some kind of savant quality; this is a stereotype that, as the sister of a severely autistic brother, I find intensely frustrating - it is heartening to see workplaces adopting a nuanced approach to autism.

One such workplace is the BBC. At the all-party parliamentary group on autism for the launch of the NAS report, I was introduced to Leena Haque and Sean Gilroy, both members of the finance team who are responsible for Project Cape (Creating a Positive Environment), which they set up in order to improve the support given to neurodivergent employees, as well as highlighting the skills and talents such individuals can bring to the table. Haque is on the spectrum, and when we meet in a crowded, noisy room in the House of Commons, with some of the busiest flock wallpaper, carpet and ceiling adornment I have ever seen, she is feeling unsurprisingly anxious. (Afterwards, I describe the choice of room to my mother as a "massive autism fail". My own brother would have lasted at most a couple of seconds in there, before completely freaking out. It just goes to show that even groups set up with the specific aim of making things more accessible to people with autism can get it wrong.)

Haque is highly qualified, with degrees from Durham University and the LSE, but because of her autism found it difficult to find employment. "It was hard to get into work and then to find the right level of support and understanding once in work," she says. "Line managers and colleagues may have heard of autism, but the level of understanding and empathy with what this actually means for me is often what was missing.

"This all changed when I joined the BBC and met my fellowship of superheroes, as I call them - the group of colleagues who have helped and supported me. The training scheme I joined had made appropriate allowances and adjustments to the recruitment process, although it was still challenging for me. The training scheme also provided additional support for me once I started and I was able to disclose my condition, but I could see there was room for improvement, particularly for people who had neurodivergent conditions.

"I suggested that the BBC could help people understand more about the issues facing neurodivergent people in employment, previously referred to as hidden disabilities - and with its support, Cape was born."

With support from Gilroy, her line manager, and Ian Haythornthwaite, the BBC's director of finance, Cape delivers the message that people with neurodivergent conditions are welcome at the BBC. "Our message is that individuals aren't weird, they are just part of a neurodiverse spectrum upon which we all sit," Haque says. Cape has the seal of approval from the director general, Tony Hall, and the deputy director general, Anne Bulford.

It means that the next generation of BBC employees with ASD will find themselves supported and championed. "We promote the skills and abilities of people with neurodivergent conditions, highlighting the strengths of differently wired brains which see and access a neurodiverse reality through a different lens," says Gilroy. Initiatives so far have included two point-of-view films that aim to convey the experiences of someone who is neurodivergent. The first highlights the challenges that people can face at work, while the second, more immersive offering looks at the same issues through 360VR (virtual reality).

Project Cape has also improved accessibility at BBC MediaCityUK Salford, and run workshops on unconscious bias set in the scenario of a zombie apocalypse. It is also doing things in the wider community, taking part in the Design Manchester festival to explore the idea of a neurodiverse-accessible journey through Manchester, and is hoping to offer similar suggestions to towns and cities across the UK.

It's inspiring to see a company such as the BBC taking such a creative and innovative approach to diversity. That's not to say that there isn't still a long way to go until society accepts and understands what it means to be autistic, dyslexic or dyspraxic to the point where people feel that they can talk about their conditions without fear of prejudice and discrimination. But as our economy becomes increasingly tech-orientated, the benefits of employing people who might excel in, say, processing, become apparent. Silicon Valley already employs a much higher than average number of people on the autistic spectrum, and this year Microsoft ran a conference on " neurodiversity in the hi-tech workforce" - with Steve Silberman, author of NeuroTribes, as keynote speaker - which was attended by delegates from companies such as Google and Apple.

The benefits of such enlightened thinking are clear. "Organisations should recognise that there are many ways people communicate and they should be more open to understanding this," says Gilroy. "If they get this right, it will open up recruitment processes and employment and they will be able to reap the reward of accessing an untapped market of creative and technical ability."

And often, Haque says, it doesn't take much to be more inclusive. "It is often simply about empowering an individual, so they can feel comfortable in sharing their feelings, as well as making sure you listen to what they need."
Topics

# data[].attributes.attachment_link.title
Autism in the workplace - an opportunity not a drawback

# data[].attributes.attachment_link.description
Let's be frank: most of us find job interviews stressful. Being bombarded with questions by a stranger who holds your future career in his or her hands is a high-stakes situation that is unlikely to be pleasant. If you have been unemployed for any period of time, you will know from experience that the pressure to succeed mounts.

# data[].attributes.headline
Masking my autism at work was exhausting 

# data[].attributes.subject
Masking my autism at work was exhausting 

# data[].attributes.attachment_link.title
‘Masking my autism at work was exhausting’: The program boosting employment for the neurodiverse

# data[].attributes.attachment_link.description
Autistic people are eight times more likely to be unemployed than average, but a work placement program run by La Trobe University aims to change that.

# data[].attributes.headline
Embracing diversity with a growth mindset 

# data[].attributes.subject
Embracing diversity with a growth mindset 

# data[].attributes.attachment_link.title
Embracing Diversity With a Growth Mindset

# data[].attributes.attachment_link.description
Getting along with others is about more than just having things in common.

# data[].attributes.headline
Employer guide for autistic adults in the workplace 

# data[].attributes.subject
Employer guide for autistic adults in the workplace 

# data[].attributes.attachment_link.description
This guide for employers explains how to support and empower autistic employees, including recruitment and inclusive culture

# data[].attributes.attachment_link.readable_text
Department of Psychiatry and Behavioral Sciences, University of Washington, Seattle, WA, United States

Seattle Children's Autism Center, Seattle, WA, United States

Department of Psychology, School of Behavioral and Brain Sciences, University of Texas at Dallas, Richardson, TX, United States

Autism Training Academy, Vancouver, BC, Canada

School of Social Work, Regional Research Institute for Human Services, Portland State University, Portland, OR, United States

Department of Medicine, Oregon Health & Science University, Portland, OR, United States

Department of Psychiatry, TEACCH Autism Program, University of North Carolina at Chapel Hill, Chapel Hill, NC, United States

Autistic people often have poor outcomes over the life course, including in health, education, employment, and community inclusion. Many professionals working with Autistic adults in research, clinical, and educational settings devote their careers to trying to improve such outcomes. However, we maintain that real progress cannot happen without a fundamental mindshift. The status quo for professionals is to view autism as an illness. Instead, the neurodiversity movement encourages us to value and embrace autism as an aspect of human diversity and asks us to view Autistic people as a marginalized group that experiences significant disparities. While some professionals may be adopting language and concepts from the neurodiversity movement, we argue that making this mindshift fundamentally changes our practice across research, clinical, and educational settings. In this perspective, we call on professionals to embrace this mindshift to reduce discrimination and stigma, halt the spread of harmful ideologies, and help Autistic adults live fulfilling lives.

1. Introduction

Autistic adults are a marginalized group of people that experiences discrimination and stigma ( 1, 2). Like other marginalized populations, these factors lead to poor outcomes in health, education, employment, quality of life, and community inclusion ( 3- 7). However, researchers, clinicians, and educators-as well as the general public-usually frame autism itself as the poor outcome rather than Autistic people as a disparity group ( 8, 9). Doing so can reinforce ableist views and result in even more discrimination, stigmatization, misrepresentation, dehumanization, abuse, harm, and traumatization ( 8, 10- 12). Viewing autism as an illness can additionally communicate that Autistic people are inferior to allistic [i.e., non-Autistic neurodivergent and neurotypical people; ( 13)], which may result in internalized ableism in Autistic people ( 1, 2, 6, 11, 12, 14).

For years, Autistic self-advocates have attempted to de-pathologize autism through the neurodiversity movement ( 14, 15), which applies the social model of disability to reframe autism as an aspect of human diversity. Neurodiversity is defined as "variation in neurocognitive functioning" [Hughes ( 16), 3 as cited by Kapp ( 15)], and neurodivergence includes autism, attention-deficit/hyperactivity disorder (ADHD), and learning disabilities, among others ( 15). Thus, neurodiversity defines a group of people comprised of different neurotypes. Neurodivergent is defined as "having a mind that functions in ways which diverge significantly from the dominant society standards of 'normal'" [Walker ( 17) as cited by Bertilsdotter Rosqvist et al. ( 18)] and thus refers to an individual. The neurodiversity movement "advocates for the rights of neurodivergent people, applying a framework or approach that values the full spectra of differences and rights such as inclusion and autonomy" [( 15), 2]. This model asks us to switch our frame from autism as a deficit or pathology ( 15, 19) to Autistic adults as a marginalized population that experiences discrimination. This perspective allows for the needs of all Autistic adults (i.e., across all levels of support need and intellectual ability) to be viewed without discrimination or judgment ( 15) and highlights that all Autistic adults have a right to accommodations, supports, equitable access to society, and a high quality of life. This does not mean that autism is not a disability-Autistic self-advocates commonly identify autism as a disability [(e.g., 20)]; this mindshift merely changes the way we view the needs of Autistic people from a medical model (where the individual is flawed and must be fixed) to a social one [where the setup of the environment determines whether a person struggles or succeeds; see Kapp ( 15)].

Professionals working with Autistic adults in research, clinical, and educational settings have a duty to make this mindshift to reduce discrimination and stigma, halt the spread of harmful ideologies, and acknowledge the trauma Autistic adults experience in academic and medical systems. Doing so fundamentally changes the way we conduct our work across research, clinical, and educational settings.

The purpose of this perspective is to describe the changes in our practice that result from embracing the paradigm of neurodiversity across research, clinical, and educational settings. We happily recognize the growing number of Autistic researchers, clinicians, and educators; and we primarily direct our recommendations toward allistic allies. In forming these recommendations, we bring professional experience in research (clinical and developmental psychology, public health, medicine, mental health services, systems science, implementation science, and community-based participatory research), clinical practice (clinical psychology and internal medicine), post-secondary education, and leadership. We also bring our personal lived experiences as Autistic, otherwise neurodivergent, or neurotypical people, family members, and activists.

2. Mindshift in action

2.1. Reframing goals

When we hold neurodiversity in mind, we are shifting our mental framework from fixing the Autistic person to helping them achieve a high quality of life. In research settings, this affects the questions we ask (e.g., "how can we remove systemic barriers for Autistic people?" instead of, "how can we change Autistic people to 'fit' into existing systems?"), the outcomes we measure (e.g., increased well-being instead of a reduction of autistic traits), and the grant funding sources we pursue (e.g., those that promote neurodiversity framing, include Autistic reviewers, support research conducted by Autistic scholars, and/or provide support for authentic Autistic engagement in the research). Within the clinic, this framework affects our case conceptualization [e.g., trauma-informed and strengths-based; ( 21, 22)], our treatment targets (e.g., driven by the client's wishes, focused on promoting well-being as defined by the client), and our approach with clients [e.g., focus on treating co-occurring conditions and increasing function as opposed to treating autism itself; ( 20)]. Utilizing a collaborative goal setting model, such as shared decision making ( 23), with Autistic clients and, if applicable, their caregivers, can help us achieve these objectives as clinicians. As educators, the neurodiversity paradigm affects our educational support targets (e.g., encouraging personal interest and inspiration for learning through student-centered engagement and expression) as well as our measures of student progress and program success (e.g., evaluating student growth in knowledge and understanding over time, evaluating student preparation for next-level courses and/or job readiness).

2.2. Viewing supports and accommodations as a human right

From a neurodiversity-affirming perspective, we view supports and accommodations as a human right. That is, each Autistic person needs their own unique and tailored supports to achieve their goals. In this way, as researchers, we are likely to frame our research questions around the barriers and facilitators that hinder or support a high quality of life, to examine the effect of supports and accommodations, and to understand how barriers can be reduced or eliminated. As clinicians, we view supports and accommodations as falling under the purview of the Americans with Disabilities Act ( 24) and work to identify and provide appropriate, tailored, and responsive supports and accommodations for the clients with whom we work ( 25). This might include providing advance preparations for an office visit ( 26); considering sensory needs and adjusting our setting appropriately [e.g., dimming lights or providing natural lighting, ensuring access to a quiet space ( 27)]; changing how we communicate with clients to prioritize their receptive or expressive communication needs; using strategies to help clients tolerate examinations and procedures; supporting clients' need for consistency or challenges with executive function; and considering the best way to incorporate caregivers while encouraging client-autonomy and shared-decision-making ( 25, 28). The AASPIRE Healthcare Toolkit includes tools and resources to help healthcare providers make individualized accommodations and may help improve client-provider communication and reduce barriers to care ( 28). Within an educational setting, this means facilitating access to appropriate supports and accommodations for students in our classrooms and laboratories as well as bolstering their own self-advocacy ( 29). Because the process of obtaining accommodations can serve as a barrier to access for many Autistic students ( 30, 31), it may also be helpful to incorporate principles from Universal Design for Learning [UDL; ( 32, 33)] to create a more equitable learning environment. Although more research is needed to clarify the efficacy, scope, and implementation of UDL ( 34, 35), helpful strategies might include providing course materials in multiple formats, including written captions and alt text for videos and images, supplementing in-person handouts with online pdf versions, allowing for alternative participation modalities, providing written feedback at regular points throughout the semester, and including links and information related to accessibility resources within the course syllabi ( 33, 36). In addition to these strategies, further empirical work evaluating the efficacy of inclusive teaching practices, such as those outlined through validation theory ( 37), community pedagogy ( 38), and inclusive pedagogy ( 39), may help to develop "best practices" for supporting neurodivergent students in the classroom. Across these settings, our willingness to offer support and accommodations ensures Autistic people can more readily access clinical services and education and meaningfully participate in research.

2.3. Valuing Autistic people's lived experience

Marginalizing a group, by definition, de-centers that group's sources of knowledge; specifically, those with power to legitimize knowledge use it to devalue and dismiss the lived experience of the marginalized group while continuously reinforcing their own power and knowledge ( 40, 41). To disrupt this mechanism, it is essential to center Autistic people's lived experience as not just legitimate but as the central or primary source of knowledge about autism.

Taking a neurodiversity frame means centering Autistic people's lived experiences by listening to them, seeking to understand them, valuing them, and-crucially-actively rejecting conflicting narratives from those who do not have the legitimacy of lived experience no matter how powerful. In research, this means asking Autistic people what they would like to have researched and how and, if need be, pivoting research agendas to those priorities. Some scaffolding to do this in research includes using emancipatory research approaches to assemble teams that meaningfully include Autistic scientists and Autistic community members, ensuring their voices are prioritized as they play an active role throughout the entire research process, and compensating them fairly for their contributions ( 42- 45). The practice of emancipatory participatory research further safeguards that the research is relevant to the Autistic community ( 9). Other scaffolding to do this work well and do it safely includes training researchers (including on how to work with diverse Autistic adults in trauma-informed and psychologically safe ways), providing adequate supports for Autistic co-researchers and collaborators, and securing sufficient funding ( 46). Further, valuing Autistic people's lived experience in research means providing the necessary accommodations to obtain direct report data from them, not from proxy reporters. We provide extensive resources for autism researchers who wish to use participatory approaches and create accessible study materials at www.aaspire.org/inclusion-toolkit.

Within clinical practice, we encourage providers to understand their client's whole and unique lived experiences, which requires humility, an awareness of intersectionality-that is, the unique experiences of those with multiple marginalized identities ( 47)-and a responsive style. A Rogerian person-centered approach may be helpful for promoting clinician authenticity, empathy, and positive regard ( 48). Within educational settings, valuing lived experiences includes training, hiring, and supporting Autistic educators, including Autistic co-facilitators and guest lecturers, involving Autistic people in curriculum development, and including written works by Autistic authors on course syllabi ( 49- 51). Educators may also implement student-centered teaching approaches, creating an accepting environment where students feel comfortable sharing their emotions and experiences ( 52, 53). By creating space for students to voice their individual needs and concerns, and providing positive feedback, educators can also help to build confidence in Autistic students who have previously faced invalidation ( 37).

2.4. Using neurodiversity affirming language

One aspect of this mindshift is reflected in the language we use to talk about autism. Historically, language pertaining to autism has been largely informed by the medical model, but recent literature points to the need for autism researchers to move away from harmful, ableist language, and instead, center Autistic people's needs, preferences, and lived experiences ( 13). Bottema-Beutel et al. ( 54) as well as Botha et al. ( 10) provide detailed descriptions on how this can be accomplished. To briefly summarize, Bottema-Beutel et al. ( 54) ask autism researchers to identify language that may be patronizing, deficit-based, or otherwise ableist and replace it with nonableist terminology (e.g., specifically describing a behavior is an alternative to the term "challenging behavior" or using "co-occurring" instead of "co-morbid"). We believe these recommendations can and must be applied to clinical and educational settings as well by using nonableist and nonstigmatizing terms in spoken and written materials (e.g., therapy handouts or worksheets, course lectures and materials). When conducting autism diagnostic evaluations in clinical settings, this may include describing a client's challenges rather than their "deficits" ( 21). To take this even further, a clinician may consider how communication challenges may have more to do with the dynamic interaction between clinician and client, rather than a "deficit" seated within the Autistic person ( 55). Across research, clinical, and educational contexts, identity-first language ("Autistic person" as opposed to person-first language, "person with autism") is aligned with the neurodiversity movement, and it is important to note that there are individual differences in preferences [(e.g., 56- 58)]. We recommend using each person's preferred terminology.

2.5. Working within fundamentally ableist systems

As individuals, shifting our mental frame away from a medicalized way of viewing autism toward a social justice model affects our work, but does not in and of itself remove us from the fundamentally ableist systems in which we work. There are opportunities, however, to push back against and innovate these systems. As researchers, we advocate for community-driven research that centers autistic lived experience, reflects community priorities, and authentically includes Autistic people as both co-researchers and as research participants; further, the commitment to centering autistic priorities means doing so every time, including ending lines of research the community repeatedly has noted as harmful or ethically problematic (e.g., studies with potential for eugenic consequences). As clinicians, although we may be tethered to the Diagnostic and Statistical Manual of Mental Disorders [DSM-5-TR; ( 59)] for diagnostic purposes, we limit the inclusion of discriminatory and stigmatizing language within assessment reports and provide our clients and their families with explanations as to why this language is used (e.g., insurance requirements). We also routinely identify and name ableism and openly discuss it with clients as we talk with them about their health, healthcare, or wellbeing. Even though the educational classification system is focused on deficits, as educators, we can work to ensure that services are delivered in a manner that affirms diversity and makes learning accessible to all students ( 39, 60). Additionally, we offer emotional support, validation, and advocacy when indicated for Autistic students who are navigating these ableist systems; we also design our own classes to be universally accessible and to promote a culture of access, such that we reduce the burden of self-advocacy for all our students.

We also advocate directly for systems-level change. Within research, this may consist of requiring the inclusion of Autistic people on research teams, in the peer-review process, or on funding boards ( 43); requiring stringent reporting of conflicts of interest ( 61); and providing Autistic community members opportunities to voice their concerns without fear of retaliation. For clinicians, we advocate for clinic and/or hospital polices that allow for neurodiversity-affirming practices and documentation. As educators, we support trainings led by Autistic faculty, staff, and students to identify and understand their needs as well as promote autism knowledge and acceptance ( 62- 64).

2.6. Leveraging greater systems change

Systems thinker Donella Meadows provides a framework for identifying and understanding leverage (i.e., places where a small change can create a large impact) within systems. The first level of leverage in the framework includes adjustments in numbers, buffers, and materials, such as increasing the number of Autistic scientists, clinicians, and educators, or increasing the capacity of research, clinical, or educational systems to support neurodiversity approaches. The next level of leverage changes the nature of relationships within a system (but not the system's structure itself), such as modifying how we use language on clinical reports or strengthening the connections between the Autistic community and the research community through participatory research models. These two levels of leverage, as outlined in the previous section, provide ways to push back against existing systems, and we are starting to see evidence of their success ( 65).

However, as we move into the future, it is both a challenge and an opportunity to consider how we can move beyond existing ableist systems and invoke the next two levels in the framework to remove sources of stigma all together. At the third level of the framework sits leverage that modifies the structure of the system-the flow of information through the system (including who can access it), the rules of the system, and the very way that the system is constructed ( 66). One place to look to for ideas in implementing interventions at this level of leverage is the Sins Invalid Disability Justice framework ( 67), which-contrasted with traditional disability rights that advocates inclusion within existing systems-encourages new structures to emerge from within Disability culture itself. Focusing on interdependence, intersectionality, and the inherent strengths, values, and resources of the community, Disability Justice provides a roadmap to creating inherently anti-ableist systems.

At the final level of Meadows' framework is leverage related to whole-system mindshifts. In order of least to greatest impact, they are, "3. [changing t]he goals of the system; 2. [changing t]he mindset or paradigm out of which the system-its goals, structures, rules, delays, parameters-arises; and 1. the power to transcend paradigms ( 66)." It is in this spirit that we encourage you to think about the potential for a neurodiversity mindshift. What happens when the goal is not normalization or even inclusion but celebration of Autistic bodyminds? What happens when our worldview inherently values neurodivergence? What happens when we have dismantled ableist systems of oppression to the point where Autistic people are no longer discriminated against at all?

3. Conclusion

In this perspective, we have shared practical considerations for the ways in which adopting the framework of neurodiversity shifts our work across research, clinical, and educational settings. Understanding that Autistic adults are a marginalized group of people that experiences discrimination and harmful outcomes drives us to shift our frame of mind from one based on a deficit model to one focused on centering the voices of Autistic people and providing appropriate supports and accommodations to help them thrive. Certainly, these recommendations are not a panacea, and there are many barriers to Autistic adults not addressed here. Nonetheless, we hope that you will consider how adopting the neurodiversity paradigm may help you to make immediate, tangible, and helpful changes to the way you conduct your research, interact with and support your clients, and engage and support students in their educational attainment.

Data availability statement

The original contributions presented in the study are included in the article/supplementary material, further inquiries can be directed to the corresponding author.

Author contributions

AM, DJ, DR, CN, and BM contributed to the conception of the manuscript. AM wrote the first draft of the manuscript. AM, DJ, TW, DR, and CN wrote sections of the manuscript. All authors contributed to the article and approved the submitted version.

Conflict of interest

The authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest.

Publisher's note

All claims expressed in this article are solely those of the authors and do not necessarily represent those of their affiliated organizations, or those of the publisher, the editors and the reviewers. Any product that may be evaluated in this article, or claim that may be made by its manufacturer, is not guaranteed or endorsed by the publisher.

Footnotes

References

16. Hughes, J. M. F. (2016). "Nothing about us without us: increasing neurodiversity in disability and social justice advocacy groups." Autistic Self Advocacy Network. Retrieved July 21, 2016.
Google Scholar

# data[].attributes.attachment_link.title
Mindshift in autism: a call to professionals in research, clinical, and educational settings

# data[].attributes.attachment_link.description
Autistic people often have poor outcomes over the life course, including in health, education, employment, and community inclusion. Many professionals working with Autistic adults in research, clinical, and educational settings devote their careers to trying to improve such outcomes. However, we mai…

# data[].attributes.headline
Learning from autistic teachers: lessons about change in an era of Covid 

# data[].attributes.subject
Learning from autistic teachers: lessons about change in an era of Covid 

# data[].attributes.headline
 Views and experiences of autistic teachers 

# data[].attributes.subject
 Views and experiences of autistic teachers 

# data[].attributes.headline
Neurodivergent talent and improving the work experience for all

# data[].attributes.subject
Neurodivergent talent and improving the work experience for all

# data[].attributes.attachment_link.readable_text
About a year ago, I had the pleasure of speaking with Rita Garwood, editor in chief of Monitor, about neurodiversity. The world, businesses and the workplace have changed quite a lot since then. So, what has happened in the realm of neurodiversity and new models of working, and how can businesses better include neurominorities? And, can including neurominorities create better workplaces for all? Both recent experience and research suggest it can. Learning to include those who have been traditionally excluded will help create more welcoming organizational systems for everyone.
The Neurodiversity Perspective
First, let's define some of the terms. The neurodiversity perspective is a reaction to the medical model that sees psychological characteristics associated with the autism spectrum, ADHD, dyslexia and other developmental differences as a pathology. In the late 1990s, Judy Singer and Harvey Blume independently coined the term "neurodiversity" to refer to population-wide differences in neurological functioning seen as a variation of the norm. They initially stressed the role of social and cultural factors in the experience of individuals on the autism spectrum; later, the same perspective was extended to other conditions. Individuals who identify as "differently wired" typically refer to themselves as "neurodivergent" but may also identify more specifically as autistic, dyslexic, dyspraxic, etc. Those who fall within the average range of functioning are referred to as "neurotypical."

In 2012, Nick Walker used the term "neurominority" to describe the experience of autistic and other neurodivergent individuals from the perspective of unequal social power. This perspective is aligned with the social model of disability, in which disablement results from the mismatch between individuals' needs and their environments.

For example, having an acute perception of sound or smell, which is characteristic of many on the autism spectrum, is not in itself a disability. In fact, the autistic characteristic of perceiving the world more intensely may result in unique and exceptional talents, such as superior memory and attention. Research demonstrates that, indeed, autistic people, on average, outperform non-autistic individuals on visual processing, search and integration tasks even if the information is presented very rapidly. This perceptual and integration ability is the reason autistic people are recruited for a special unit of Israel's army. Neurodivergent analysts are particularly effective at examining complex images delivered in real-time from military satellites to detect potential threats.

At the same time, the "disabling" associated with autism and sensory sensitivity often results from living in a world designed for the less sensitive majority, with the constant "sensory assault" of overpoweringly strong sounds, smells and other stimuli. Imagine if every conversation occurring within earshot - piped music, the sound of colleagues chewing gum, the sound of the office copier - had the intensity of a leaf blower. Anyone would become overwhelmed.

Dealing with an environment designed to fit the majority impacts both the overall life experience of neurominorities and their workplace experience, including access to employment. For example, small talk as a part of a job interview is required to enter nearly all jobs, including positions for which such small talk is not essential. This barrier prevents autistic job-seekers from entering jobs for which they are fully qualified. Similarly, in traditional workplaces, managerial preferences for in-person work and refusal to allow work-from-home setups often result in burnout and, likely, a job loss for neurodivergent employees.

To include and support neurominority talent, organizations need to expand the range of options for time, place and methods in which work can be done. As demonstrated by the lessons from the unfortunate and forced experiment of the COVID-19 pandemic, the resulting flexibility is likely to help all employees. However, we are only beginning to learn from these lessons.
Hybrid Work
In many ways, work-from-home and hybrid work models have been a welcomed change. For a long time, work-from-home was an accommodation that neurominority employees and people with a range of disabilities have asked for but were denied. During 2020 and 2021, working away from overstimulating crowds, uncomfortable offices and workplace bullies has been a major improvement for many neurodivergent professionals. Whether new forms of hybrid work will allow this temporary improvement to become a long-term solution may largely depend on the will of leaders in organizations to find the best way forward.

Implemented well, hybrid work carries a promise to provide opportunities for many different types of individuals, both those who can't wait to get back to social gatherings and those who are most fulfilled and productive working from home. It also promises expanded access and support for neurominority individuals. At the same time, there are many models of hybrid work, and selecting the win-win approach for organizational needs as well as various employee needs is a tremendous leadership challenge.
Which Hybrid?

There are a few ways to classify different hybrid work models, including:

People-split. Some individuals work on-site, while others work remotely.

Time-split. All individuals work some days on-site and other days remotely.

Remote-first. Remote work is a default, with face-to-face work as needed.

Office-first. In-person work is a default, with remote work as needed/allowed.

There are further intermediate types that make selecting the "best" model complicated. However, asking just a couple of questions can help with decision-making.

The first question leaders should ask is whether the nature of work will dictate the specific approach. However, most office operations can be successfully conducted under any of these approaches - and all have pluses and minuses. What should be the tie-breaker question when selecting the best approach? I suggest choosing the model or models that will help get the work done with minimal stress.

The "Great Resignation" is largely explained by burnout. Most employees feel the impact of heavy workloads and uncertainty. This is even more pronounced for neurodivergent employees. Making work sustainable for all requires minimizing the level of stress. This does not mean, however, that work does not need to be done.
Working with Our Strengths
One of the best ways to get work done with a minimal level of stress is by supporting employees in working with their strengths. That could mean selecting the place that maximizes productivity (work, home, a third place, or a specific mix), choosing times that work best with one's natural rhythm and focusing on tasks that are best aligned with employee abilities. Again, this is not just true for neurominority employees, but because of "spiky" ability profiles, working with strengths and with who we are via job-crafting is particularly important for neurodivergent employees with areas of particularly strong and/or below-average abilities.

Unfortunately, job crafting is often seen as an individual pursuit that may benefit some employees at the expense of others and result in essential tasks not getting done. This, however, is incorrect. Job crafting should always be aligned with both individual and organizational goals. Moreover, employees can job-craft not only as individuals but as teams, and in well-selected teams, individuals are likely to have complementary rather than competing strengths. When teams and leaders craft work to advance organizational purposes and inspire individuals, undesirable tasks get done, according to Ron Carucci and Jarrod Shappell.

Concerns may still remain that different workstyles will clash and workdays will be extended when employees chose when and where to work. But, this concern does not need to limit flexibility. However, we may need to work on changing some bad work habits. Unfortunately, we often use technology meant for asynchronous communication, such as e-mail or project management software, as if these were synchronous tools, resulting in interruption to our thinking time, which is likely to be particularly stressful for autistic employees. These maladaptive work habits can be unlearned, however, and reasonable expectations for asynchronous versus synchronous work will likely reduce stress for everyone.

Additional hybrid work practices that can support neurodivergent talent, as well as the majority of employees, involve:

No-meeting days or half-days for deep work

Limiting "on" or collaboration hours to about three hours in the middle of the day, with the rest left for flexible use

Ensuring there are multiple methods and channels of communication, such as Zoom with video, no video, chat, e-mail and in-person meetings, all moderated in ways that allow individuals with different communication styles to be heard equally

In the next few years, humanity will design the future of work. We have an opportunity to ensure this future is both productive and inclusive by creating systems that are flexible and work with a wide range of individual talents and strengths instead of against them.

# data[].attributes.attachment_link.title
Neurodivergent Talent and Improving the Work Experience for All

# data[].attributes.attachment_link.description
As where and how we work continue to evolve, it is important to consider all perspectives when choosing the right approach. Ludmila N. Praslova discusses different types of hybrid working models and explains how job-crafting to employee strengths can help ensure equal footing for neurodivergent talent.

# data[].attributes.attachment_link.readable_text
If you're an employer, learn more about inclusive interviews and more in this Guide.

If you have experience of autism, get involved in research, including our work on employment.

As a charity we rely on your support to fund our research, resources and campaigns.

# data[].attributes.attachment_link.title
We need to research and rethink how we hire | Autistica

# data[].attributes.attachment_link.description
We are the UK's leading autism research charity. Our vision to create breakthroughts that enable all autistic people to live happier, healthier, longer lives.

# data[].attributes.headline
Support priorities of autistic university students and career advisors 

# data[].attributes.subject
Support priorities of autistic university students and career advisors 

# data[].attributes.attachment_link.title
Support Priorities of Autistic University Students and Careers Advisors: Understanding Differences, Building on Strengths

# data[].attributes.attachment_link.description
Background: The number of autistic individuals attending university and entering the workforce is growing, but there is a persistent employment gap. Higher education careers services offer students help to secure employment post-graduation. This research sought to identify barriers to and facilitato…

# data[].attributes.headline
Career and job guidance counselling in autism 

# data[].attributes.subject
Career and job guidance counselling in autism 

# data[].attributes.headline
Influencing disabled people’s employment through responses to reasonable adjustments 

# data[].attributes.subject
Influencing disabled people’s employment through responses to reasonable adjustments 

# data[].attributes.headline
The strengths and abilities of autistic people in the workplace 

# data[].attributes.subject
The strengths and abilities of autistic people in the workplace 

# data[].attributes.attachment_link.readable_text
Abstract

Introduction:

At present, very few autistic people are employed, even though many want to be. It is important that their strengths are identified and valued to help them to find jobs that they enjoy, and that make good use of their skills. The aim of this study was to investigate what strengths autistic people have in the workplace, self-reported by autistic people themselves.

Methods:

In this study, autistic participants ( n  = 66) completed an online questionnaire that asked their views about employment-related strengths that they experienced. We analyzed these data using thematic analysis to identify commonalities across participants' experiences, and areas where they felt that they could perform better than their nonautistic colleagues.

Results:

The main strengths identified from these data revealed cognitive advantages such as superior creativity, focus, and memory; increased efficiency and personal qualities such as honesty and dedication; and the ability to offer a unique autism-specific perspective.

Conclusions:

Overall, this study suggests that autistic people have many employment-related strengths that should be recognized and valued by autistic people and employers alike. By understanding the strengths that could be associated with autism in the workplace, autistic people may be better able to identify their own strengths in the workplace (with the help of support workers, where necessary). The results should also encourage employers to make an effort to recruit and retain autistic employees, making appropriate adjustments to interview processes and working conditions, and seeking out training when needed.

Keywords: autism, employment, strengths

Community brief

Why was this study done?

At the moment, very few autistic people are employed, even though many want to be. One reason for this might be that nonautistic people focus on things that autistic people find difficult, and ignore things that autistic people can do well. To address this, it is important to make people more aware of strengths that autistic people have, and make sure that they are valued.

What was the purpose of this study?

We did this study to find out what strengths autistic people have in the workplace, as suggested by autistic people themselves.

What did the researchers do?

In this study, we asked autistic people to fill out an online questionnaire that asked their views about the strengths that they experienced at work. A total of 66 people completed the questionnaire. We read through everyone's answers, and put them into groups of similar responses. In that way, we could identify the areas where the autistic participants felt that they could perform better than their nonautistic colleagues.

What were the results of the study?

The participants in our study wrote about many areas of strength and skill at work. The main strengths that they mentioned were advantages related to ways of thinking (like being able to pay attention to tasks well), getting tasks done more efficiently, and personal qualities such as honesty and dedication. They also wrote about how being autistic meant that they could offer a unique view on situations at work.

What do these findings add to what was already known?

This was the first study to look at autistic people's experiences of skills in the workplace. Other studies have considered skills more generally, rather than focusing on employment-or have used other people's views about autistic skills, rather than autistic people's own views.

What are potential weaknesses in the study?

To take part in our study, people had to be able to fill out an online questionnaire. This can be difficult for people with intellectual impairment or other language/communication difficulties, which means that some autistic people might have been excluded from our research. More research should be done to understand the skills of people with a wider range of communication differences. Those who took part in our study were also different from the autistic population as a whole-for example, most were female and worked in education. This means that we should not presume that the strengths found in our study are shared by all autistic people.

How will these findings help autistic adults now or in the future?

We think that these results could be important to employers, those working with autistic people, and autistic people themselves. By understanding the strengths that could be associated with being autistic in the workplace, autistic people may be better able to identify their own strengths in the workplace. This may enable them to find a job that they enjoy and excel at. The results should also encourage employers to make an effort to give jobs to autistic people, making changes to interview processes and working conditions, and seeking out training when needed. Overall, this study suggests that autistic people have many employment-related strengths that should be recognized and valued by autistic people and employers alike.

Introduction

Arecent survey by the Office of National Statistics found that just 22% of autistic adults in the United Kingdom held any kind of paid job.1 This falls far short of the employment rate of 80% among nondisabled adults and 54% of all disabled adults.2 Given that 77% of unemployed autistic people report wanting to work,1 more needs to be done to support autistic adults into employment.

Early research into the strengths of autistic people focused on savant abilities, such as the ability to perform rapid mental mathematical calculations, or draw detailed scenes from memory.11 However, these savant skills are relatively rare12 and researchers have now begun to investigate what strengths might be relevant to a wider autistic population. For example, Mottron et al.13 found evidence to suggest that autistic people have an enhanced local processing ability compared with neurotypical (NT) people, meaning they are more likely to focus their attention on small details before processing the bigger picture (making them more efficient at certain tasks). Attwood14 identifies that autistic people are likely to be reliable, in possession of a sense of social justice and integrity, attentive to detail, original in problem solving, and honest. Russell et al.15 interviewed 24 autistic participants about strengths that they identified as being related to their autism. The most commonly reported traits were "the ability to hyperfocus, attention to detail, good memory, and creativity" as well as personal qualities such as "honesty, loyalty, and empathy for animals or for other autistic people" (p.30).

These strengths are likely to be extremely relevant in the workplace, and there is a growing body of anecdotal evidence to support this. In particular, there has been much discussion about how autistic traits may be of benefit to those in the technology industry,16 with companies such as Microsoft and Google actively recruiting autistic employees. Similarly, the European organization Auticon only hires autistic Information Technology (IT) consultants to perform work for businesses that they believe NT employees might find more challenging.

Despite this anecdotal evidence, at present there is little academic peer-reviewed research to support such claims. The most recent and most comprehensive research into this area comes from Scott et al.,17 who conducted a scoping review of 134 studies that discussed the factors impacting employment for autistic people, including strengths. Content analysis revealed strengths such as good attention to detail, a strong sense of morality, superior intellectual functions, and technical abilities. However, most of the data came from studies that analyzed the efficacy of employment interventions and was largely provided by employers. Given the importance of participatory and emancipatory research in disability studies,18 it is important for research to include the viewpoints of autistic people themselves.

Wong et al.19 go some way toward achieving this, conducting an autoethnographic study of strengths associated with autism in the workplace based on Wong et al.'s lived experiences as an autistic person. They identified a number of strengths including honesty, intense focus, fixation on details, and strengths in cognitive and visual thinking: all of which aided Wong et al.19 in their various careers. However, the findings (based on a single participant) are not necessarily generalizable to a wider autistic population. It will, therefore, be useful to consult with a larger number of autistic people to identify the extent to which such strengths are applicable to a wider autistic population.

As such, the aim of this study is to investigate the strengths of autistic people in the workplace, based on reports from autistic people themselves. Owing to the lack of existing literature on this topic, our study was exploratory in nature.

Methods

Participants

All participants were autistic adults (over 18 years). This included those with a formal diagnosis, those currently seeking a diagnosis, and those who self-diagnosed as autistic. People who self-diagnosed were also included because for those not diagnosed in childhood, seeking a professional diagnosis in adulthood can be difficult, expensive, and involve long waiting times, making it impractical or impossible for some.20 Participants were required to have experience of paid and/or unpaid employment, so that they could draw on their lived experiences.

We recruited participants online through the authors' personal social media pages, the University College London (UCL) Centre for Research in Autism and Education social media pages, and through online groups specifically for autistic people. Details of the study, along with a link to access the survey, were distributed as widely as possible through these channels.

Sample demographics

In total 82 people engaged with the questionnaire. Of these, 66 people completed at least 50% of the survey and were, therefore, included in the analyses (individual n values are given for each variable). Most respondents were clinically diagnosed (77.3%) and female ( n = 44, 66.7%) with similar number of male ( n = 10, 15.2%) and nonbinary ( n = 12, 18.2%) participants. The age of respondents ranged from 19 to 67 years, with a mean age of 40 years. The majority of participants were based in the United Kingdom ( n = 41, 62.1%) or in the United States ( n = 13, 19.7%) and were employed ( n = 47, 71.2%) at the time of completing the survey (see Table 1 for full demographic information).

Table 1.

Variable

Category

n

%

Most common current employment sectors a

Education

15

22.7

Most common previous employment sectors a

Education

19

28.8

With respect to areas of employment, the most common sector was education, though a large number of participants had previous employment experience in the retail sector (see Table 1 for full list of employment areas).

Measures

We used a bespoke questionnaire, designed specifically for this study. The questionnaire comprised two sections, and used a combination of Likert-style, multiple choice, and open-text questions.

Part 1 included demographic questions: for example, age, gender, diagnoses. Part 2 asked participants about their current area of employment. They were also presented with an open text box to describe the strengths they felt were associated with being autistic in their workplace (providing examples in their current role where they felt these traits had helped them to outperform their nonautistic colleagues). Participants could also opt to discuss their strengths in relation to previous job roles.

Before embarking on data collection, we sent the questionnaire to three people who met the inclusion criteria and who agreed to give feedback. As a result of this piloting, two questions were reworded, a minor spelling error was amended, and an error in the questionnaire flow was corrected (see Supplementary Data for full questionnaire details).

Procedure

We administered the questionnaire through the online survey platform Qualtrics21 and it took ∼15 minutes to complete. We received ethical approval for the project through the Department of Psychology and Human Development at UCL Institute of Education. Although there were minimal risks associated with this study, we adhered to the British Psychological Society Code of Human Research Ethics22 and guidelines for Internet-Mediated Research.23 All participants completed digital consent forms before taking part in the questionnaire.

Data analysis

We used the IBM SPSS statistics package24 to calculate descriptive statistics for the responses to the closed-ended questions in the survey.

To analyze the qualitative data (from open-ended questions), we used thematic analysis.25 We used a latent approach, which attempts to interpret the data beyond what has been written, to "theorize the significance of the patterns and their broader meanings and implications," 25(p.84) relating findings to previous literature.

The first author (R.C.) collated the responses and, from initial readings of the document, identified a number of initial categories and themes. The process of thematic analysis was initially deductive: R.C. began the coding with categories in mind, based on the areas of strength identified by previous research. We also took an inductive approach, however, where additional codes were generated that were driven by the data. R.C. coded the data to identify each subtheme, which were then organized into master themes. During the reviewing, defining, and naming process, the authors took steps to remain reflexive, to minimize the impact of authors' own experiences on the interpretations of the data. The varying neurotypes of the coders meant that we were able to check each other's interpretations to ensure that codes remained true to the content of the participants' responses. The authors subscribe to a neurodiversity framework and have prior involvement in autistic advocacy, employment initiatives for autistic people, and research on autistic strengths and abilities. Importantly, R.C. is autistic and led the coding, thereby bringing a lived-experience perspective to the process. The second author (A.R.) and a second nonautistic coder (who supported aspects of the analysis) independently identified themes from the data, and any minor discrepancies were resolved by discussion based on specific examples from the data. After peer review, a small number of themes were further refined/modified.

Results

We identified five themes (and associated subthemes) from the qualitative data (see Fig. 1 , and see Supplementary Table S1 for more example quotes for each theme and subtheme). All themes and subthemes were found in participant responses to the questions about current and past jobs, so themes are presented here together.

Theme 1: Cognitive advantages

Autistic participants reported a number of cognitive advantages. First, they spoke of excellent attention to detail: "Because of my very strong focus on small details I am able to provide a consistently high standard of work for my clients (sewing machinist)." One participant explained how, as a researcher, their attention to detail helped them outperform NT colleagues:

On this and previous jobs, I have repeatedly 'fired' (presumably) NT colleagues or students from these tasks (i.e., reallocating their time and help elsewhere!) because they just cannot do them at a usable level of accuracy and detail despite extensive training. I find the exacting detail and procedure to be very easy to understand; my colleagues obviously don't (researcher).

This excellent attention to detail allowed some participants to spot errors that others may have missed. One participant explained how this helped them to proofread more accurately than NT colleagues as they were good at "picking up errors that others miss, e.g., in a book editing, one half came out perfect, the other (which I didn't handle) full of errors" (former subeditor). Several participants noted that superior pattern recognition skills gave them a similar advantage: "[I can] see patterns in data to come up with better systems" (lecturer). Many of the participants in this study identified being able to work logically and systematically as a strength related to being autistic. One participant explained how they had an exceptional ability to systematically conduct literature reviews from a vast selection of library books: "This was one of the happiest two weeks of my life, I think. To be confronted with such a huge system of knowledge and to systematically characterise a part of it, in almost complete silence" (former research assistant). Many participants noted the ability to show a sustained and intense focus, often suggesting it helped them to outperform their NT colleagues who did not have this ability:

Hyperfocus often helps, once I've got interested in a topic or task. This works well for research, when I can happily read or think about a topic for hours, days...I definitely experience flow states when thinking like this more than my non-autistic colleagues (researcher/lecturer).

This increased attentional ability also led to increased reliability in the workplace: "I can maintain quality on repetitive tasks which need 100% concentration (e.g., grading) more than most of my colleagues" (Teacher). Participants also reported superior memory skills, which allowed them to retain a great deal of information.

In addition to more logical and systematic strengths, participants also reported creativity and innovation as strengths associated with their autism. Several participants worked in creative industries and noted that their autism made them more creative or able to come up with different and "quirky" designs. Strengths related to creativity and "thinking outside the box" were also commonly reported among those in caring professions: "[Autistic people] are famous for our ability to think outside the box. When it comes to solving conflicts this enables us to come up with often unconventional ideas ..." (childcare worker).

Theme 2: Efficiency

In addition, participants felt they performed tasks more efficiently than their NT colleagues: "I am very good at workflow efficiency and figuring out how to do new things rapidly" (former mechanic). Key to this efficiency were increased accuracy ["[I] spotted several typos on a webpage that colleagues had missed" (civil servant)], enhanced productivity [quicker or more productive at tasks on conveyor belt (manual laborer)] and excellent organizational skills: "In my lab, we need to do a lot of very complicated planning, organizing people, procedures equipment, schedules...I can do and keep track of most of this in my head, and my colleagues definitely cannot" (scientific researcher). Together, these allowed many of our participants to come up with more effective solutions than their NT colleagues: "[I am good at] getting things done more quickly than a drawn-out approach whereby something is 'answered' without being answered, and crops up again later, but worse" (administrative worker). Respondents also credited their ability to work independently.

Theme 3: Personal qualities

Many participants identified personal qualities, which they associated with their autism and felt were advantageous in the workplace. First, many reported being honest and having a strong sense of social justice and fairness. For example, participants noted:

In situations where something seriously wrong was happening, I was the one to speak up about it (former prison officer).

In many examples, the participants had noticed something that they believed was wrong and had spoken out where their NT colleagues had not. This led to various changes being implemented that improved outcomes for people they were working with.

One participant explained:

I have a strong sense of right and wrong, and if I am asked to cover up something untoward I refuse (police officer).

However, this participant (alongside several others) suggested that, although they perceived their honesty as a strength, their employers and/or colleagues (particularly those in senior management) did not always agree, which sometimes led to conflict. Nevertheless, many participants did feel that they had personal qualities related to their autism that benefitted them greatly in the workplace.

Participants also reported being extremely dedicated to their work, with a strong work ethic and genuine passion for their work. For example, one participant noted:

It is more important to me than to my neurotypical colleagues to ensure that all data is 100% transferred and accurate and that all processes and actions are documented thoroughly (university admin officer).

A number of participants alluded to the benefits of being less socially focused than their nonautistic colleagues and explained how this reduced social pressure allowed them to excel in the workplace. For example, some highlighted their enhanced objectivity: "I would say I am less susceptible to group think when being asked for an opinion about something" (policy development). For others, the reduced social emphasis led to greater efficiency: "Disinterest in small talk & general self-promotion leads to greater productivity" (administrator).

Participants also noted that being autistic gave them increased empathy when working with other autistic or disabled people, or others who were deemed somehow "different" compared with societal norms. Several participants in this study explained how they felt this benefitted them in their roles: "I tend to do very well with creating a safe space for people [who] for some reason are misfits" (learning support assistant, transcultural counsellor).

Theme 4: A unique perspective

Our participants remarked on the unique perspective that being autistic allowed them to take. For example, the ability to draw on personal experiences enabled them to help others in a similar situation. One participant, a teacher working with d/Deaf students, explained how being autistic helped them to engage with their students:

[I am good at] bridging the gap between Deaf and hearing communities-I understand both and can effectively mediate and adjust language use (Autistic and Deaf mindsets/cultures are both very literal) (special education teacher).

For this participant, their experience of being autistic helped them to adapt their teaching methods in a way that made sense to their students. These examples demonstrate how being able to reflect upon their own experiences as autistic people is useful in the workplace, particularly for those working in caring professions or education.

Several participants suggested that intense interests led to a desire to find out more about their area of work ["Because teaching is a special interest, I am always trying to learn about ways to improve my teaching" (teacher)] and meant that they had a superior knowledge base compared with their NT colleagues, particularly in niche or under-researched areas: "I write good, useful articles covering subjects no one else (maybe on the whole net) have written about" (former subeditor).

Similarly, some participants expressed a particular enjoyment or willingness to do jobs or perform tasks that NT employees may dislike. For example, one participant, a university lecturer, explained how they enjoyed the repetitive nature of teaching the same course every year: "Colleagues do not believe that I am v happy to still teach the first year intro course after 15 years doing it" (university lecturer).

Discussion

The results of this study demonstrate that, based on the lived experiences of autistic people, there are many employment-related strengths that can be attributed to being on the autistic spectrum. These centered on cognitive skills (e.g., attentional superiorities), personal qualities (e.g., honesty and dedication), and the unique perspective that being autistic offered (e.g., empathy for those with differences).

Many of the skills map onto the cognitive strengths of autistic people reported in previous literature. For example, excellent attention to detail,17 superior pattern recognition,14 and being logical and systematic26 have all been recognized as areas in which many autistic people excel. In this study, we have shown how these skills are reflected in the workplace. Furthermore, we found these advantages for participants employed not only in industries that have been traditionally associated with autistic employment (e.g., IT) but also across a wide range of sectors (creative industries, hospitality, etc.). Likewise, the personal qualities shared in this study have also been noted previously. Russell et al.15 and Wong et al.19 found that autistic people reported high levels of honesty outside and inside the workplace.

There were two areas of strength, however, that are inconsistent with much previous research. First, although many of our participants mentioned superior organizational skills, research has consistently suggested that autistic people often display deficits in executive functioning, which includes organizational abilities.14 It is possible, then, that a lower degree of impairment in executive functioning is a mediating factor in the difficulties autistic people face regarding finding and maintaining employment. It would be interesting for future research to assess to what extent impairments (or lack of) in executive functioning are related to the ability of autistic people to access work.

There was great consistency between our findings and those of Russell et al.15: all the skills described by their participants when reflected on daily life in general were also reflected by our participants when considering their workplace experiences. In addition, those who took part in our study remarked on the value of holding different preferences and viewpoints to their NT colleagues. For example, in the way this allowed them to successfully complete tasks that nonautistic employees were not able to, or did not wish to engage with. Although it would be unethical for employers to assume that their autistic employees would be willing to undertake tasks others dislike without asking them first, our findings highlight the importance for autistic people to have access to specific careers support to help them identify what kind of work they would enjoy while making good use of their strengths. This was echoed by a number of our participants who discussed the positive outcomes when working in an area linked to their intense interests. Wehman et al.31 describe a detailed assessment process for autistic people looking to find work, involving interviews, observations, and situational assessments whereby a support worker would observe the jobseeker while they tried out a number of different jobs in different workplaces. Once the person was employed in a suitable job, employment specialists would help them to develop strategies to cope with the workplace, such as creating a visual timetable and writing short scripts for common workplace interactions. It is interesting that 72.2% of jobs found were classed as "customized employment," whereby the employer created a job specification for an individual worker rather than fill an existing vacancy. Although exact figures are not given, they found that the majority of participants were able to retain their jobs for over a year. Similarly, some evidence for the value of special interests in the workplace (in terms of both providing comfort to the autistic employee and with respect to career success) was reported by a small group of employed autistic people in Switzerland.32

Limitations of the study

This report is the first study to examine strengths from the autistic perspective, specifically in relation to employment. We must acknowledge, however, the exploratory nature of our study and the limitations of our study.

First, we note the limitations of the participant group and, consequently, how far the findings can be generalized. Our study, by nature of collecting data through an online questionnaire, required a certain level of cognitive ability and may not, therefore, have been accessible to autistic people with intellectual disability (ID) or other language/communicative difficulties. Subsequent research should examine the views of autistic people with ID with regard to skills in the workplace. Our participant group was also predominantly female, despite rates of autism diagnoses remaining higher for men than for women. With respect to participant occupations, a large number worked in the education field. This may have been due to the networks we used to distribute our survey (as both authors are within the education field themselves) and might have resulted in this increased recruitment of female participants (women are over-represented in the teaching professions). This difference between the demographics of our participant group and the demographics of the wider autistic population should be taken into account when considering the generalizability of our findings. Despite this, the consistency of our findings with anecdotal accounts of strengths experienced by those in technology-based sectors (who were not well represented in this study) reinforces the validity of our results.37 It is possible, however, that the discrepancies between our study and previous studies (i.e., reports of superior executive function and empathy) may be gender specific.

We also welcomed participants from any global location as we felt that the workplace strengths experienced by autistic adults were important to highlight, irrespective of location. As such, although most participants were from the United Kingdom, a fifth were from the United States and a small minority were from other Western countries. Given that experiences may differ for those in different countries due to sociocultural factors related to both autism and employment, future studies should compare the experiences of autistic people across the world.

Furthermore, although the majority of our participants reported being clinically diagnosed as autistic, we chose to also include those who were self-diagnosed or in the process of seeking a clinical diagnosis. As already noted, we feel that this is important due to the barriers (cost, anxiety, and limited access to services) that many people experience when pursuing an autism diagnosis.38 We acknowledge, however, that the experiences of those with and without clinical diagnoses may be different.

Second, because our study focused on skills that had been experienced in the workplace, we required participants to have experience of employment. Our findings, therefore, do not take into account the experiences of autistic people who have never had a job, which may account for up to 40% of autistic individuals.2 It would, therefore, be valuable for similar research to be undertaken to ascertain what strengths might be relevant to autistic people without experience of employment and how these could be utilized to help people access work.

Third, this study was limited to consideration of positive aspects of being on the autistic spectrum, yet we know that many autistic differences can be both an advantage and a challenge-depending on the situation.15 As such, there is likely to be a complex interplay between a person's autism-related strengths and associated challenges. For example, several participants mentioned being able to perform repetitive manual tasks quickly and effectively, which might suggest they would be well suited to working in a factory. However, autistic people often experience sensitivity to sensory input such as noise, bright lights, and busy environments.39 A factory will inevitably involve many of these sensory challenges, making it difficult for an autistic person to utilize their strengths there. Future research should consider in more depth this nuanced impact of autistic traits within the workplace.

Lastly, our results are based on self-reported strengths and abilities rather than independent observations or assessments, and, therefore, reflect perceptions that are inevitably subjective. Our aim with this study, however, was to understand autistic people's own perceptions of their strengths in the workplace, rather than quantitatively measuring performance or reporting on what others may perceive about autistic employees.

Conclusion

Overall, our research suggest that employers would be wise to consider how they can support autistic employees to utilize their strengths in a workplace context: benefiting both the employers and their autistic employees. We hope that this study will also have a positive impact on autistic people who may, by reading these findings, be able to spot some of these strengths in themselves. Identifying their own strengths, with support where necessary, may help autistic people to make decisions about what employment might be right for them and to recognize the immense value that they can bring to the workplace. The findings may also help those working with autistic people as they prepare for employment, to help autistic people identify their own unique strengths that can be applied to the workplace.

Acknowledgments

The authors thank Andrew Cope for his contributions to the analysis and Sarah Cope and Laura Crane for their support during data collection, analysis, and initial write-up phases of the project.

Authorship Confirmation Statement

R.C. and A.R. contributed to the study concept and developed the survey questions. R.C. led participant recruitment, designed the online questionnaires, and extracted data. R.C. and A.R. conducted data analysis. R.C. and A.R. drafted the article. Both authors have reviewed and approved this article before submission. This article has been submitted solely to this journal and is not published, in press, or submitted elsewhere.

Author Disclosure Statement

No competing financial interests exist.

Funding Information

There was no funding specifically associated with this study. Study at the Centre for Research in Autism and Education (CRAE) is supported by Pears Foundation.

References

3. Ullman MT, Pullman MY. A compensatory role for declarative memory in neurodevelopmental disorders. Neurosci Biobehav Rev. 2015;51:205-222. 10.1016/j.neubiorev.2015.01.008. [[ PubMed] [ CrossRef] PMC free article] [ Google Scholar]

8. Johnson T, Joshi A. Disclosure on the autism spectrum: Understanding disclosure among employees on the autism spectrum. Ind Organ Psychol. 2014;7(2):278-281. [ Google Scholar]

9. Flower R, Dickens L, Hedley D. Barriers to employment for individuals with autism spectrum disorder: Perceptions of autistic and non-autistic job candidates during a simulated job interview. J Intellect Disabil Res. 2019;63(7):652. [ Google Scholar]

12. Treffert DA. The savant syndrome: An extraordinary condition. A synopsis: Past, present, future. [[ Philos Trans R Soc. 2009;364(1522):1351-1357. 10.1098/rstb.2008.0326. PubMed] [ CrossRef] PMC free article] [ Google Scholar]

30. Harrison JL, Brownlow CL, Ireland MJ, Piovesana AM. Empathy measurement in autistic and nonautistic adults: A COSMIN systematic literature review. Assessment. 2020. 10.1177/1073191120964564 (accessed July 26, 2021). [ PubMed] [ CrossRef]

31. Wehman P, Brooke V, Brooke AM, et al.. Employment for adults with autism spectrum disorders: A retrospective review of a customized employment approach. Res Dev Disabil. 2016;53-54:61-72. 10.1016/j.ridd.2016.01.015. [[ PubMed] [ CrossRef] Google Scholar]

38. Lewis LF. A mixed methods study of barriers to formal diagnosis of autism spectrum disorder in adults. J Autism Dev Disord. 2017;47:2410-2424. 10.1007/s10803-017-3168-3. [[ PubMed] [ CrossRef] Google Scholar]

39. American Psychiatric Association. Diagnostic and Statistical Manual of Mental Disorders: DSM-5. 2013. 10.1176/appi.books.9780890425596.dsm01. [ CrossRef]

Articles from Autism in Adulthood: Challenges and Management are provided here courtesy of Mary Ann Liebert, Inc.

# data[].attributes.attachment_link.title
The Strengths and Abilities of Autistic People in the Workplace

# data[].attributes.attachment_link.description
At present, very few autistic people are employed, even though many want to be. It is important that their strengths are identified and valued to help them to find jobs that they enjoy, and that make good use of their skills. The aim of this study was ...

# data[].attributes.headline
Workplace disclosure experiences of autistic people 

# data[].attributes.subject
Workplace disclosure experiences of autistic people 

# data[].attributes.attachment_link.title
“People Might Understand Me Better”: Diagnostic Disclosure Experiences of Autistic Individuals in the Workplace | Autism in Adulthood

# data[].attributes.attachment_link.description
Background: Autistic individuals face challenges in the workplace, particularly related to social communication. Diagnostic disclosure may mitigate these challenges, but it also exposes individuals to potential discrimination. This study aimed to share the diagnostic disclosure experiences of autist…

# data[].attributes.headline
Who, when, how to share (you’re autistic) 

# data[].attributes.subject
Who, when, how to share (you’re autistic) 

# data[].attributes.attachment_link.readable_text
Han, E., Scior, K., Umagami, K., Heath, E. L., Dufresne, S. R., & Crane, L. (2023, May 29). Who, When, How to Share: Pilot study of a new disclosure decision-making programme for autistic adults. https://doi.org/10.31219/osf.io/bztuq

Han, Emeline, et al. "Who, When, How to Share: Pilot Study of a New Disclosure Decision-making Programme for Autistic Adults." OSF Preprints, 29 May 2023. Web.

Han, Emeline, Katrina Scior, Kana Umagami, Eric L. Heath, Simone R. Dufresne, and Laura Crane. 2023. "Who, When, How to Share: Pilot Study of a New Disclosure Decision-making Programme for Autistic Adults." OSF Preprints. May 29. doi:10.31219/osf.io/bztuq.
Get more citations

# data[].attributes.attachment_link.title
Who, When, How to Share: Pilot study of a new disclosure decision-making programme for autistic adults

# data[].attributes.attachment_link.description
In this pilot study, we report on the feasibility, acceptability and preliminary impact of 'Who, When, How to Share', a new disclosure decision-making programme for autistic adults. We evaluated this programme using pre-post mixed methods surveys that included questions about participants' experiences of the programme and four psychosocial outcome measures.

# data[].attributes.attachment_link.readable_text
Bullying is one of the most persistent and costly workplace problems. It employee physical and mental health and results in the loss of productivity, as well as talent loss via turnover. And yet, bullying is hardly ever addressed.

While workplace bullying is highly problematic for all employees, it has particularly severe consequences for autistic individuals. Bullying of autistic people in the workplace is a problem that cost many their jobs and is likely contributing to the extremely high rates of unemployment (85% in the , 78% in the , and 60% in ). In this paper, I propose that bullying of autistic people is also a problem made particularly persistent due to its cyclical nature: autistic people are more likely to be bullied, and are also more strongly affected by bullying, both psychologically and physiologically. Sadly, autistic employees are also less likely to be believed while seeking a recourse, and less likely to receive empathy. This leads to further cycles of bullying.
Autistic people are more likely to be bullied
Starting in the childhood, autistic people are more likely to be bullied both at home and at school . This in the workplace. Compared to other employees, autistic individuals are more likely to be by bullies. In the UK, of the autistic employees report bullying, harassment, or other discrimination or unfair treatment at work.

Exceptionally high productivity of many autistic people, along with their strong focus on work, are often when presenting the business case for autism employment. After all, no other group of employees has been shown to be up to 140% more productive than their typical counterparts. However, there is a danger to this focus and productivity. " Get smarty pants " phenomenon, also known as bullying and victimization of top performers, is well documented in the workplace as well as at school. A key explanation is coworker envy and concern with unfavorable comparison. High performance and the resulting coworker envy are likely to contribute to of autistic performers. Moreover, autistic focus on work rather than socializing, while contributing to productivity, can also be perceived by coworkers as negative. Other "strikes" against autistic performers include blunt communication perceived as lack of agreeableness, and simply being different.

On the other end of performance distribution, low performers are also likely to experience bullying. If an autistic individual is poorly matched to the job or the job calls for skills associated with "lows" of one's " " profiles, the lower performance is also likely to cause bullying.

Bullying of high performers is likely to be . Typical tactics include withholding of information and resources, gossip, making false complaints to supervisors, sabotage, and backstabbing. Bullying of low performers is more likely to be overt and to involve yelling, threats, and other forms of direct hostility.
Autistic people are more strongly affected by bullying
While all workers suffer the negative effects of bullying, these effects are often particularly detrimental to autistic individuals. Autistic people are more likely to have chronic autonomic nervous system (ANS) hyperarousal - a chronic biological threat response. This makes autistic individuals more vulnerable to harmful physiological stress response to bullying and incivility, possibly resulting in physical illness or even cardiac events.

In addition, the history of bullying trauma typical of autistic individuals results in another vulnerability factor - gelotophobia , the conditioned fear of being laughed at and ridiculed. The term is derived from the Greek word ''gelos'' for laughter and ''phobia'' for fear. It is a type of anxiety related to an intense feeing of shame arising as a long-lasting result of prior bullying, ridicule, and mockery. Because ridicule and mockery are some of the most typical ways in which the world treats autistic people, high levels of gelotophobia are reported to occur at much higher rates in autistic (87.4) vs. non-autistic populations (22.6%). It is likely that the repeated experience of bullying creates the phobia of being mocked, which likely exacerbates social awkwardness in autistic people, leading to a cycle of torment and further increases in fear and anxiety.
Autistic people are less likely to be believed
Most workplaces in the US lack regulations against bullying, and despite generally stronger legislation, Canada and many European countries still anti-bullying recourse. In many cases, there is simply no recourse. And if there is any possibility of recourse, the burden of proof rests on the target on bullying - and autistic people are less likely to be believed.

Experimental research that autistic individuals are seen as more deceptive and of lesser character" than neurotypical individuals when telling the truth. These judgments relied on perceivers' impressions such as "he seemed nervous," or "body language seemed off" and the overall liking.
Autistic people are less like to receive empathy
Most decision-makers are allistic and are thus more likely to side with other allistics rather than with autistics. Research demonstrates that non-autistic individuals tend to lack empathy toward autistic people and display significant automatic of disliking after a very brief first impression, which persists into further interaction, and is accompanied by exclusionary behaviors. Thus, an allistic bully will likely have an advantage over an autistic target in the judgment of allistic decision-makers.

In sum, the cycle of bullying in the workplace is embedded in both organizational systems and in human biases. Therefore, it is unlikely to be broken without significant structural intervention. I will discuss several possible mechanisms that may help reduce bullying in the workplace in general and bullying of autistic employees specifically in the next installment.

# data[].attributes.attachment_link.title
Workplace bullying of autistic people: a Vicious cycle.

# data[].attributes.attachment_link.description
Bullying is one of the most persistent and costly workplace problems. It employee physical and mental health and results in the loss of productivity, as well as talent loss via turnover. And yet, bullying is hardly ever addressed. While workplace bullying is highly problematic for all employees, it has particularly severe consequences for autistic individuals.