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Ageism: What’s the Harm? Centre for Ageing Better. 

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Ageism: What’s the Harm? Centre for Ageing Better. 

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Ageism is discrimination against someone because of their age. Ageism is often dismissed as being harmless, but evidence shows that it causes significant damage to individuals, the economy and society.

There are three main types of ageism:

1. Institutional ageism, when ageism is embedded in laws, rules, social norms, policies and the practices of institutions

2. Interpersonal ageism occurs in the interactions between individuals

3. Self-directed ageism is when a person internalises ageism due to repeated exposure to ageist messages and, as a result, modifies their own thinking and behaviour

This report shows how ageism causes deep and lasting harm to people and society, directly and indirectly, exacerbating social divisions and inequalities and damaging our economy.

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Ageism is discrimination against someone because of their age. Ageism is often dismissed as being harmless, but evidence shows that it causes significant damage to individuals, the economy and society.

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A “gloriously ordinary life”: Spotlight on adult social care. Report of the Adult Social Care Committee. December 2022. 

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A “gloriously ordinary life”: Spotlight on adult social care. Report of the Adult Social Care Committee. December 2022. 

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“I Always Knew I Was Different”: Experiences of Receiving a Diagnosis of Autistic Spectrum Disorder in Adulthood - a Meta-Ethnographic Systematic Review. Hannah Gellini & Magda Marczak.

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“I Always Knew I Was Different”: Experiences of Receiving a Diagnosis of Autistic Spectrum Disorder in Adulthood - a Meta-Ethnographic Systematic Review. Hannah Gellini & Magda Marczak.

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Method

This systematic review was created under the guidance of the "Preferred Reporting Items for Systematic Reviews and Meta-analyses" (PRISMA 2020; Page et al., 2021). The PRISMA checklist was used to facilitate preparation, reporting and gauge completeness and transparency of the review (Page et al., 2021; Online Resource 1). This review was registered on the International Prospective Register of Systematic Reviews (PROSPERO) and a published protocol is available under the registration number CRD42021279148. Ethical approval was granted by Coventry University Ethics Committee.

Systematic Literature Search

Database Search

The systematic literature search was carried out in October 2021 for papers that explored the experience of receiving a diagnosis of autism in adulthood. Studies were identified using electronic databases: Medline, Embase, Web of Science and APA PsycInfo. Additional studies were found using Google Scholar and manual review of reference lists of extracted articles. A database auto-alert was also set up to gather any relevant articles which were published between the time of the search and the end of March 2022.

Search Strategy

A structured search strategy was created using relevant key words determined with the assistance of a specialist librarian. Table 1 presents an overview of the key search terms used. The search strategy followed Boolean logic when searching for key words. The Boolean operators "AND" and "OR" were used to construct a combination of keywords. The truncation * was used to retrieve different variations of search terms. The detailed search strategy used across the four databases for searches are presented in Online Resource 2.

Identification of Studies

Screening

After duplicates were removed, titles and abstracts were screened for relevance by the first and second author independently. Inter-rater reliability analysis using the Kappa statistic was performed, the overall Kappa coefficient was κ = 0.521, indicating moderate agreement (Viera & Garrett, 2005). In some instances, there was a disagreement over which articles to retain; however, following a discussion, there was complete agreement across all article titles and abstracts reviewed.

Eligibility

Following the initial screening of the title and abstract, the full-text remaining articles were screened for eligibility using specified inclusion and exclusion criteria (Table 2). The first and second author independently reviewed the full texts. Inter-rater reliability analysis was conducted, the overall Kappa coefficient was κ = 0.754, indicating substantial agreement (Viera & Garrett, 2005). There was disagreement over three articles; however, following discussion, there was complete agreement on all full-text articles.

Studies were only included if they used a qualitative design or a mixed-method design where the qualitative findings were reported separately. Only research exploring individuals' experiences of assessment and diagnostic process in adulthood were included. NICE guidance for diagnosing and managing autism considers adults to be individuals aged 18 and over (NICE, 2012). Consequently, studies were only included where participants received their diagnosis aged 18 or over given the process and experience of diagnosis in adulthood is likely to be experienced differently to children. Studies were only included if participants received a diagnosis of autism following assessment, as the experiences of adults who have undergone assessment and not received a diagnosis are likely to differ significantly. Samples were included if participants had a confirmed diagnosis using any classification system. Studies were excluded if the participants self-diagnosed their autism.

Only studies published in English were included to enable interpretation by the authors. Additionally, only articles published between 2008 and 2022 were included as the diagnosis of autism in adulthood is a relatively recent phenomenon. Furthermore, this ensured studies indicated in the scoping review conducted by Huang et al., ( 2020) were reviewed in addition to any further studies published since their final search in November 2018.

Data Extraction

The first and second author independently extracted the data from each paper to ensure accuracy. The following data points were extracted from each study: author, year, country, research aims, research design, sampling method, sample characteristics, method of data collection, method of data analysis and key findings.

Quality Assessment

To assess the quality of the studies identified, the Critical Appraisal and Skills Programme (CASP) checklist was used (CASP 2018). The CASP does not produce a quality score; however, in line with other researchers (Boeije et al., 2011; Lachal et al., 2017) a three-point scale was applied to each criterion (0 = criterion not met, 1 = criterion partially met, 2 = criterion fully met). The total score for each article was calculated by summing the scores such that articles could receive a total score between zero and 20. The articles were individually assessed against the CASP criteria by the first and second author independently and the mean CASP score was used for the final rating. Inter-rater reliability analysis was performed; the overall Kappa coefficient was κ = 0.749, indicating substantial agreement (Viera & Garrett, 2005).

Data Analysis

To reduce the impact of subjectivity and ensure the trustworthiness of the data, the second author was involved in all phases of the meta-ethnography. Both authors determined the research question, focus of the synthesis, conducted the literature search and made decisions on inclusion criteria and quality assessment. The first author completed the remaining phases independently; however, the second author coded a section of a transcript by extracting metaphors and themes. The authors then compared transcripts to consolidate the meaning of the codes used. The final phases of data analysis were regularly presented at research meetings to the second author to ensure adherence to the procedure.

Results

In total, 1637 articles were initially identified, of which 378 were duplicates, resulting in 1259 studies considered suitable for further screening. Following the screening of titles and abstracts, 1236 records were excluded. Full texts for the remaining 23 eligible articles were reviewed and a further 17 articles were excluded from the review at this stage. Additionally, studies were identified via other methods including Google Scholar, citation searching and database auto-alerts. A further 12 articles were identified and assessed for eligibility, of which 10 were duplicates, resulting in an additional two studies retained for inclusion. A further screening of studies who have cited Huang et al., ( 2020) paper and database auto-alerts was completed prior to publication which resulted in an additional study retained for inclusion. This resulted in nine articles being retained for quality assessment (QA) (Fig. 1).

PRISMA 2020 flow diagram for new systematic reviews which included searches of databases, registers and other sources. *Consider, if feasible to do so, reporting the number of records identified from each database or register searched (rather than the total number across all databases/registers). **If automation tools were used, indicate how many records were excluded by a human and how many were excluded by automation tools. From: page MJ, McKenzie JE, Bossuyt PM, Boutron I, Hoffmann TC, Mulrow CD, et al. The PRISMA 2020 statement: an updated guideline for reporting systematic reviews. BMJ 2021;372: n71. https://doi.org/10.1136/bmj.n71. For more information, visit: http://www.prisma-statement.org/

Study Design and Quality

Included studies were from the UK ( n = 6), USA ( n = 1), Australia ( n = 1) and South Africa ( n = 1). All studies employed a qualitative methodology except for Powell & Acker, ( 2016) who used a mixed-method approach. Across the studies, the sample size ranged from eight (Atherton et al., 2022) to 77 participants (Lewis, 2016). All studies used a mixed-gender sample except for Leedham et al., ( 2020) who only included females and Lupindo et al., ( 2022) who only included males. The mean age of participants ranged from 29.8 years (Atherton et al., 2022) to 60.38 years (Hickey et al., 2018) and the mean age at diagnosis ranged from 34.75 years (Lupindo et al., 2022) to 49.19 years (Lilley et al., 2021).

Studies used a number of different methods to collect data; semi-structured interview ( n = 5), free-associative narrative technique ( n = 1), open-ended text questions ( n = 1), an oral history approach ( n = 1) and an online open-ended survey ( n = 1). There was also a range of methods used to analyse the data including thematic analysis ( n = 5), interpretative phenomenological analysis ( n = 3) and Collaizzi's descriptive phenomenology method ( n = 1). Characteristics of the nine studies included in this review are presented in Table 3.

Based on their appraisal using the CASP tool, the studies included in the review were of good quality with all papers scoring between 80 and 95%. QA scores for individual papers are presented in Table 3. Lower-scoring papers often lacked sufficient detail with regard to the relationship between the researcher and participants and ethical issues. Not describing how researchers' subjectivity was managed, reduces the credibility of results. Only the papers by Lupindo et al., ( 2022) and Stagg & Belcher, ( 2019) provided a reflexive comment on their positionality. However, other papers did describe some reflexive techniques (Leedham et al., 2020; Lewis, 2016; Lilley et al., 2021; Punshon et al., 2009). Furthermore, all but one paper (Powell & Acker, 2016) evidenced that approval from an ethics committee was granted; however, the level of detail about ethical procedures varied across articles.

Other limitations highlighted from the CASP related to the data analysis process and the contribution of the study to existing knowledge. The studies by Leedham et al., ( 2020) and Lewis, ( 2016) did not include a second researcher as part of the analysis process, therefore, reducing the trustworthiness of the results. Furthermore, the suitability of the data analysis procedure may be questioned for the study by Stagg & Belcher, ( 2019) which used thematic analysis (TA) when interpretative phenomenological analysis (IPA) may have been more appropriate, therefore, limiting the conclusions drawn from the findings. IPA has a dual focus on the unique characteristics of individual participants making sense of their experience and patterning of meaning across participants whereas TA focuses solely on the patterning of meaning across participants. Therefore, IPA appears to align better with (1) the aim of the study to explore the lived experience of individuals receiving the diagnosis and (2) the free-associate narrative interview technique used which allows the interview to change dependent on the interviewee's experience.

Additionally, the paper by Powell & Acker, ( 2016) only included two qualitative questions and asked participants to describe their experiences in a few sentences. This reduced the quantity of qualitative information available, therefore limiting the extent to which its findings contribute to current understanding. Moreover, the samples used in the three studies were predominantly White, well-educated and middle-class (Atherton et al., 2022; Hickey et al., 2018; Lilley et al., 2021). No additional demographic data was provided in four studies (Leedham et al., 2020; Powell & Acker, 2016; Punshon et al., 2009; Stagg & Belcher, 2019). Cultural values have been recognised to shape beliefs about autism, behavioural expectations and experiences of stigma and discrimination (Grinker & Cho, 2013; Lilley et al., 2020; Norbury & Sparks, 2013). Therefore, it is possible the results are not transferable to other populations with different cultural and socioeconomic backgrounds.

Data Synthesis

Across the studies, two meta-themes were identified: feeling " like an alien" and the " not guilty" verdict. Meta-themes with respective subthemes are depicted in Table 4. The individual paper's contribution to the meta-themes and subthemes is shown in Table 5. Each meta-theme and respective subthemes are discussed in detail below. For further quotations evidencing each subtheme see Online Resource 3.

Feeling "Like an Alien"

This meta-theme conceptualises the experiences of difference shared by participants. Awareness of difference typically occurred in childhood and adolescence and continued into adulthood. Not all participants acknowledged their own difference; however, they were aware that others perceived them as different. Some participants viewed their differences positively, " we are one rung up on the evolutionary ladder" (Punshon et al., 2009, p.278), whereas others felt " mental", " wrong" or " defective" (Leedham et al., 2020, p.139) because of them. This awareness of difference, generally associated with a range of distressing emotions, was often what prompted individuals to seek a diagnosis (Jones et al., 2014). Three subthemes were identified: " Different-yes, special-yes, unique-yes, able-very much so, superior-yes, ... but defective-never!", " I just was a square peg in a round hole" and " I felt so lacking as a person".

"Different-Yes, Special-Yes, Unique-Yes, Able-Very Much so, Superior-Yes, ... but Defective-Never!"

This subtheme highlights the positive ways in which participants viewed themselves: " I knew I didn't think like others, but knew I was in many ways, superior to them" (Lewis, 2016, p.348). Academic success, creativity and curiosity were commonly reported as a source of positive difference: " a number described themselves as 'nerds' [able to] 'outthink' most of [their] peers at high school..., always curious to start with; [someone] who read seven science fiction books in one day" (Lilley et al., 2021, p.6). For some participants " the solitary pursuit of interests allowed for more immersion in particular activities and experiences of mastery and achievement" (Hickey et al., 2018, p.362). For others, being disconnected from people allowed for embracing the " richness of their interior lives" (Lilley et al., 2021, p.5), especially in childhood: " as a child I was in my own world-carefree, happy .... I was pretty much my own person" (Lilley et al., 2021, p.5).

"I Just Was a Square Peg in a Round Hole"

"I Felt so Lacking as a Person"

This subtheme explores the distressing emotions that were experienced as a result of participants feeling different from others and internalised beliefs that they were " wrong", " broken" or " bad" (Leedham et al., 2020, p.138). Many shared feelings of loneliness as a result of limited social networks despite efforts to socialise and develop friendships which were experienced as distressing: " the most excruciating loneliness ... inside just complete and utter turmoil" (Lilley et al., 2021, p.7). In the absence of any other framework to explain their difference many individuals blamed themselves and developed negative self-concepts:

The "Not Guilty" Verdict

This meta-theme illustrates the experience of receiving a diagnosis of autism in adulthood shared by participants. Gaining a diagnosis resulted in a complex mix of feelings, " relieved but a bit daunted and overwhelmed" (Powell & Acker, 2016, p.75), and significantly influenced their relationships with others. Three subthemes were identified: " One moment of him and his team ... saying yes, I'm insane or I'm not", "After years of feeling defective I finally had the answers" and "I belong somewhere with other people who are like me".

"One Moment of Him and His Team ... Saying, Yes, I'm Insane or I'm Not"

This subtheme highlights participants' experiences of mental health services and the diagnostic process. Participants often accessed a variety of different services and received numerous medical opinions. Many found their experiences were not understood by professionals therefore they initially received alternative diagnoses which did not explain their difficulties. Misdiagnoses often led to failed support and reinforced participants' feelings of being different:

Strengths such as academic ability or social skills and stereotyped views were commonly reported as barriers for recognition and identification of autism: " I speak neurotypical fluently. I don't look autistic. They'll say, 'Well, you went to a mainstream school, you got two degrees. You're in employment, in fact, successfully self-employed. Come on. Why waste time on you" (Atherton et al., 2022, p.8). For others, their family perceiving their behaviour as unique and not problematic led to not seeking professional support; " I don't think there was much concern about it ... my family's really fairly accepting" (Lupindo et al., 2022, p.9).

My daughter ... she didn't cope in the normal ... then somebody told us that her brother was diagnosed with Asperger's and that [therapist name] was leader in the field ... he called us back and he said ... he wants to see me next ... so then I waited for my session and then it was discovered (Lupindo et al., p.9).

"After Years of Feeling Defective, I Finally Had the Answers"

This subtheme explores participants' individual experiences post-diagnosis. Participants expressed feelings of relief as they were able to make sense of their experiences after many years of living without a diagnosis. Difficulties such as making and maintaining friendships or romantic relationships, academic and employment difficulties and mental health challenges could be understood in the context of the diagnosis: " after 50 years of not understanding the 'why' of myself, finding out I was an Aspie was a light in the darkness, best thing that happened to me" (Lewis, 2016, p.350). When the autism diagnosis replaced a previous diagnosis participants were particularly pleased: " not being labelled BPD or just stroppy by the Community Mental Health Team (CMHT) means a lot to me" (Powell & Acker, 2016, p.75). Despite the relief highlighted by participants, many felt " devastated" and saw the diagnosis as " another nail in the coffin" (Lewis, 2016, p.349). For some the process of re-evaluating their lives in the context of the diagnosis was painful and frustrating:

Some participants shared that they did not feel comfortable with their new autistic identity given the potential to be seen only through a negative lens: " I thought 'am I just anything other than these symptoms?' Um, that really upset me ... I sort of started doubting my ability to do my job" (Leedham et al., 2020, p.139). Others reported worries due to the lifelong nature of the diagnosis: " I am never going to be like one of these 'normal' people ... I thought 'I am stuck being like this now'". (Punshon et al., 2009, p.278) A period of grief following diagnosis was common among participants; this was associated with sadness at how their life may have been different had their needs been appropriately understood:

Feeling angry about being failed by professionals previously was commonly reported: " there's these glaring issues and you see how multiple times you were failed by various professionals that should have and could have seen issues" (Atherton et al., 2022, p.10). However, a minority expressed feeling pleased that they had not received their diagnosis in childhood as they felt it could have limited their ability to reach their full potential and it enabled them to find ways to adapt: " living without a diagnosis was a hard teacher, but a good one" (Lewis, 2016, p.350). Increased understanding of their difficulties helped them " to plan and prepare for situations, knowing how [they] may react, and how to avoid difficult situations ... so [they] can keep to places and activities [they are] comfortable with" (Stagg & Belcher, 2019, p.354). It also enabled individuals to attribute negative experiences to autism leading to increased compassion and self-acceptance: " having that knowledge was such a powerful thing because I could understand and forgive myself" (Lilley et al., 2021, p.8).

"I Belong Somewhere with Other People Who Are Like Me"

This subtheme explores participants' interpersonal experiences post-diagnosis. The diagnosis provided opportunities to meet others with autism which enabled them to share experiences, enhance their understanding of autism and feel accepted by others: " you're accepted. You don't have to sort of hide anything ... the people, some of them are on my wavelength" (Hickey et al., 2018, p.363). Participant's self-acceptance was largely influenced by how family and friends responded to their diagnosis:

Many participants found that their friends, family and work colleagues were more understanding of their difficulties; " ... it's more like they understand that OK, I have a diagnosis, and I have a disability. And that I'm not OK with work and stuff like that. So, I would say it's less stressful" (Atherton et al., 2022, p.9). However, the disclosure of diagnosis was also at times met with unhelpful reactions from others. Some significant others did not appreciate its magnitude:

Others, who held stereotyped or stigmatised views of autism or its genesis, either refuted any blame: " there is a distinct reaction from my dad ... that it can't possibly be his fault that one of his children doesn't work properly. Something he made doesn't work properly" (Punshon et al., 2009, p.279), or they felt relief they were not responsible for the participant's difficulties to date: " I think my mum ... you know, often she felt that she was getting the blame ... not just from psychiatrists but also from other people" (Punshon et al., 2009, p.279). Relationship changes were common post-diagnosis with some significant others being more supportive in light of new understanding of the experienced difficulties: " ... he'll [husband] now take the lead in situations where he knows I'm not comfortable, whereas before he just thought I was being awkward" (Leedham et al., 2020, p.141). However, other participants experienced a negative change in their relationships and chose to end them: " ... the implication ... I was automatically wrong because I had this Asperger's thing ... So that was unexpected, and I had to walk away" (Leedham et al., 2020, p.141). Finally, some reported others expected less of them or experienced discrimination, which fostered a sense of regret at seeking a diagnosis:

Discussion

This meta-ethnography extends the current literature by drawing attention to the experiences of receiving a diagnosis of autism in adulthood. The findings are consistent with Huang et al.'s ( 2020) scoping review; however, this review provides a more detailed exploration of the themes including the experience of difference pre-diagnosis, the diagnostic process and individual and interpersonal experiences post-diagnosis. The review also illustrates the impact of the delayed diagnosis on the individual's mental health, access to support, relationships and life opportunities. Furthermore, four of the eight studies reviewed focus on middle to late adulthood (Hickey et al., 2018; Leedham et al., 2020; Lilley et al., 2021; Stagg & Belcher, 2019) which is a particularly underserved group in autism research and practise (Happé & Charlton, 2012).

A diagnosis of autism enabled opportunities for shared experiences which were viewed positively. Previous research suggests interactions with other autistic adults are validating, fulfilling and normalising (Bargiela et al., 2016; Hickey et al., 2018; Tan, 2018). Consistent with previous research, adults described both supportive and unhelpful reactions from others post-diagnosis; the latter were commonly influenced by stereotyped or stigmatised views of autism (Crane et al., 2018).

Clinical Implications and Recommendations

Understanding the assumptions that lead to misdiagnoses or delayed diagnosis would be an important initiative. Participants frequently reported not feeling understood by professionals, therefore it is important that clinicians have a broad, comprehensive and up-to-date knowledge of autism for effective identification and support. Clinicians should receive training highlighting the different presentations of autism across the lifespan and considering other barriers to identification such as gender differences, cultural differences, high intelligence or masking. Furthermore, training should extend beyond an understanding of autism characteristics and focus on promoting respectful and effective therapeutic support (Nicolaidis et al., 2015); this would increase knowledge and reduce the stigma associated with autism (Gillespie-Lynch et al., 2015). NICE guidance suggests autism strategy groups should ensure the provision of multi-agency training (NICE, 2012).

Progression from feeling misunderstood to self-acceptance only occurred following diagnosis. This highlights the need for timely diagnosis to enable individuals to better understand their needs. Diagnostic processes for adults are poor in comparison to those for children and lack formal support services (Huang et al., 2020). Compared to services available for children, adult services receive very little funding, support and assistance (Camm-Crosbie et al., 2019). Ensuring equitable access to assessment and support services for adults is essential and is in line with the national strategy for autistic children, young people and adults: 2021 to 2026 on improving early identification, reducing waiting times and improving diagnostic pathways for adults (Department of Health and Social Care & Department for Education, 2021).

Considering the complex mental health needs of individuals receiving a diagnosis of autism in adulthood (Geurts & Jansen, 2012; Hofvander et al., 2009) and emotional responses post-diagnosis (Jones et al., 2014; Lewis, 2016), the lack of post-diagnostic support is a concern. Receiving a diagnosis is a complex and emotional life event which involves a reconceptualization of identity. Services should recognise adults will be coping with years of being misunderstood, excluded and criticised without understanding the cause. Access to mental health services is critical to support this process of reflection and adjustment as this is unlikely to be resolved within the assessment process. Diagnostic services often do not provide ongoing support (Crane et al., 2018; Evans et al., 2022); therefore, a collaborative multidisciplinary effort is required to develop support pathways post-diagnosis. Creating therapeutic services where individuals can be supported with disclosure, identity, masking, mental health difficulties and sensory challenges is crucial. It is important that services are tailored to the individual's needs, in particular to their autism, to prevent withdrawal from services (Crane et al., 2019; NICE, 2012).

Limitations

This meta-ethnography has some limitations. Reviewed studies reported experiences of individuals who received their diagnosis across different healthcare systems around the world. It is recognised that there are different assessment processes in these respective settings. Furthermore, whilst some autism traits appear similar across cultures, other traits are specific to particular cultures and must be accounted for during assessment (Carruthers et al., 2018).

It is acknowledged that papers not written in English were excluded from the current review introducing a language bias (Butler et al., 2016). Due to the time and cost implications of translation, this was unavoidable.

Future Research

Studies conducted in Western countries dominate research on the experiences of autism diagnosis in adulthood. Disparities in culture, awareness of autism and healthcare systems in different countries will have important implications for the prevalence of autism and experience of the diagnostic process. Further research in non-Western countries would allow for consideration of these factors and inform policy development.

To address the underrepresentation of marginalised groups, researchers should promote diversity, equity and cultural humility, and ensure their research addresses the specific needs and interests of these groups (Maye et al., 2021). In addition, researchers should aim to recruit large representative samples or samples in which marginalised groups are over-represented to replicate previously accepted findings and gain insight into health outcomes among these groups (Robertson et al., 2017; West et al., 2016). To achieve this, culturally competent researchers should collaborate with marginalised communities to identify and eliminate barriers to participation and co-produce research.

Given many individuals diagnosed with autism in adulthood are supported by their parents or partners, future research should explore the experiences of supporting their autistic child or partner to adapt to the diagnosis. A large body of research explores the experiences of parents of children who receive a diagnosis. Due to differences of parenting an adult and the longer time taken to receive the diagnosis, the impact is likely to be different. NICE guidance (2012) and the Think Autism strategy (Social Care, Local Government and Care Partnership Directorate, Department of Health, 2014) highlighted the impact on carers supporting individuals with a diagnosis of autism. This research could assist the development of appropriate therapeutic support for carers.

Conclusion

Broadening of diagnostic criteria and increased awareness of autism has resulted in a " lost generation" of individuals whose autism has remain undiagnosed until adulthood (Lai & Baron-Cohen, 2015, p.1013). Diagnosis can prompt a process of sense-making which can be disrupted by a lack of post-diagnostic support. Existing services for adults are limited and underfunded (Huang et al., 2020), with few evidence-based supports for autistic adults (NICE, 2012). This meta-ethnography provides further clarity on the experiences of adults prior to receiving their diagnosis, during the diagnostic process and post-diagnosis which can be used to inform the development of adult diagnostic and support services. The current understanding provides a starting point for enabling positive experiences across diagnostic services for adults. It also highlights the importance of healthcare systems being equipped for the needs of the "lost generation" as more adults seek an explanation for their differences.

Author information

Authors and Affiliations

1. Coventry University, Priory Street, Coventry, CV1 5FB, UK

Hannah Gellini & Magda Marczak

2. University of Warwick, University Road, Coventry, CV4 7AL, UK

Hannah Gellini

Contributions

The idea for the review was developed by Hannah Gellini and supported by Dr. Magda Marczak. Hannah Gellini performed the literature search and data analysis. Dr. Magda Marczak supported the screening, data extraction and quality assessment. The manuscript was written by Hannah Gellini and Dr. Magda Marczak commented on drafts of the manuscript. All authors read and approved the final manuscript.

Corresponding author

Correspondence to Hannah Gellini.

Ethics declarations

Ethical Approval

Ethical approval was granted by the Faculty of Health and Life Sciences Ethics Committee at Coventry University. The procedures used in this study adhere to the tenants of the Declaration of Helsinki.

Competing Interests

The authors declare no competing interests.

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Footnotes

Throughout this paper identity-first language (e.g., autistic person) is used as this is preferred by most autistic people and is associated with less stigma and discrimination (Botha et al., 2021; Bottema-Beutel et al., 2021). Furthermore, in line with guidance for autism researchers non-ableist language alternatives have been used in order to avoid potentially ableist terms such as special interests or autism symptoms (Bottema-Beutel et al., 2021).

Supplementary Information

Below is the link to the electronic supplementary material.

Supplementary file3 Online Resource 3 Further Examples of Direct Quotations from Original Papers to Illustrate Subthemes (DOCX 38 KB)

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Gellini, H., Marczak, M. "I Always Knew I Was Different": Experiences of Receiving a Diagnosis of Autistic Spectrum Disorder in Adulthood-a Meta-Ethnographic Systematic Review. Rev J Autism Dev Disord (2023). https://doi.org/10.1007/s40489-023-00356-8
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Keywords

Autism

Autistic spectrum disorder

Adult

Diagnosis

Experiences

Meta-ethnography

Review

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"I Always Knew I Was Different": Experiences of Receiving a Diagnosis of Autistic Spectrum Disorder in Adulthood-a Meta-Ethnographic Systematic Review - Review Journal of Autism and Developmental Disorders

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A broadening of diagnostic criteria and increased awareness of autism has led to a large number of individuals whose difficulties remained undetected until adulthood. This systematic review aimed to synthesise empirical evidence of the experience of individuals who received their diagnosis of autism in adulthood. Eight studies met the inclusion criteria.

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‘Outsider’ identities: the intertwining of gender, sexuality and autism. Square Peg Podcast with Kelly McCartney.

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‘Outsider’ identities: the intertwining of gender, sexuality and autism. Square Peg Podcast with Kelly McCartney.

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[89] S7, Ep9: 'Outsider' identities: the intertwining of gender, sexuality and autism

Topics in this episode: Alexithymia, autism at work, gender, relationships, self diagnosed, sensory issues, sexuality

Kelly McCartney is a music journalist from Rhode Island, USA. She is 52 and self-diagnosed as autistic in April of 2022.

She has turned a life-long special interest in music into an incredibly varied, 30-year career in almost every area of the music industry, including interning at Entertainment Tonight, working as personal assistant to various well known musicians, project managing independent artists, and hosting music podcasts and radio shows, including Record Bin Radio on Apple Music.

In 2018, she co-founded the Rainey Day Fund, which provides assistance to BIPOC, LGBTQ+, disabled and other marginalised artists who add to the rich fabric of roots music.

She is currently exploring a tangle of identities, being queer, genderqueer and autistic, and deep in discovery about which of her life-long quirks are actually autism.

In our conversation we talk about:

➡ Trying to untangle her overlapping identities

➡ The challenges of romantic relationships, confrontation and sensory overload

➡ Alexithymia

➡ How she's built her career out of her special interest, and adapted how she works to meet her autistic needs

Squarepeg is a podcast in which neurodivergent women, and trans and nonbinary people, explore navigating a neurotypical world and share their insights, challenges and successes.

I hope that these conversations will be inspiring and thought provoking, open you up to new ways of thinking about being neurodivergent, and help you feel more connected to a worldwide community of people with similar experiences.

I'm Amy Richards, and after being diagnosed autistic at the age of 37 I'm now on a mission to learn more about different perspectives and issues around being a neurodivergent adult in a world that feels like it doesn't quite fit.
EPISODE LINKS:
Kelly's radio show: http://apple.co/recordbinradio

Her website: https://www.kellymccartney.com

Instagram: https://www.instagram.com/kellymccartneyx/

Twitter: https://twitter.com/kellymccartneyx

Facebook: https://www.facebook.com/kellymccartneyx
If you'd like to connect or get in touch with Squarepeg, you can find me on:
Instagram: https://www.instagram.com/squarepeg.community/

Twitter: https://twitter.com/squarepegautism

Facebook: https://www.facebook.com/squarepegautism/

Or on my website: https://squarepeg.community/
THANK YOU TO MY PATRONS!
A HUGE thank you to my amazing patrons, who support my work on the podcast:

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If you're enjoying the Squarepeg podcast and would like to help me carry on making new episodes, you can become a member of the Squarepeg community on Patreon from £3 per month: https://www.patreon.com/squarepegpodcast

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[89] S7, Ep9: 'Outsider' identities: the intertwining of gender, sexuality and autism - SquarePeg

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Kelly McCartney is a music journalist from Rhode Island, USA. She is 52 and self-diagnosed as autistic in April of 2022. She has turned a life-long special interest in music into an incredibly varied, 30-year career in almost every area of the music industry, including interning at Entertainment Tonight, working as personal assistant to various [...]

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‘We are Proud Autistic Women’. Poem by Kristy Forbes, Autism & Neurodiversity Support Specialist, translated from English to Icelandic by Kristín Vilhjálmsdóttir and Þóra Leósdóttir. Subtitled in English.

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‘We are Proud Autistic Women’. Poem by Kristy Forbes, Autism & Neurodiversity Support Specialist, translated from English to Icelandic by Kristín Vilhjálmsdóttir and Þóra Leósdóttir. Subtitled in English.

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Poverty, Resource Distribution and the Autistic  Experience. Autistic Social Worker blog. 

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Poverty, Resource Distribution and the Autistic  Experience. Autistic Social Worker blog. 

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ASW

This piece is based on my observations locally, my professional experiences (in practice and academically) and across the social media context. I've been musing over this for a while. It is something that is both spoken and unspoken in differing ways. I am reflecting on the impact of poverty, access to resources and the Autistic lived experience.

It's alluded to in the media at the moment and in general conversation that cost of living is a topic of concern for most people for the first time in 20 years. It's a national issue and as such is described as a crisis. It seems it is now OK to talk about it, as it affects the majority. Yet some of us have lived with poverty far beyond our own lifetimes.

Poverty is not missing out on that second holiday abroad this year. Nor is it not being able to afford a new build home. Poverty is when you have no means to acquire what you need to live on a basic day-to-day basis without being at the expense of something else. The eat vs heat situation, for example,or the lack of provision for something essential for you to function. It is an accessibility issue. It is an inclusion issue. It is a life chances issue. It is a life-defining issue and it can be a life-ending issue.

You only have a choice if you have the resources to make that choice. Physically, socially, emotionally, and yes financially.

The Social Work Role

Poverty is oppressive. Poverty is oppression. This is because poverty is determined as a social construct. It is a message to you about your worth, your value and your status in the society you live in. It does not only mean the distribution of wealth but the distribution of resources.

We do know quite a bit about the impact and spread of poverty actually. We know that it negatively affects life chances on a long-term basis (e.g. Bywaters et al 2022). We also know that different identity groups experience poverty disproportionately. For example, families with one or more disabled members experience poverty at a higher rate (31%) compared to families where disability is not an identity (19%) in the UK (Francis-Devine 2022). We also know that the intersection of marginalised identities further impacts on the risk of experiencing poverty (Bywaters et al 2022).

Our role as social workers is to be explicit about poverty, its impact and how we can support within these experiences and enable people to move out of poverty (see BASW's Anti-Poverty Practice Guide ). It needs to be part of our language with families, our assessment of need and risk, and within our planning with those we work with. It needs to move from the back of our minds to the forefront of our actions.

I would like to focus on how unequal distribution of resources impacts Autistic people. To me, being Autistic and living autistically is experienced differently depending on what you have access to. It could be financial resources, but we also can experience social poverty where our access to social networks and support can be very, very different.

I have lost count of the number of times I have been asked if my family can help (they can't), or if there is "someone who can support with this" (whatever "this" happens to be). This is not a reality for some of us. It just doesn't exist. But the assumption doesn't go away, and it has led me to be excluded from access to various things including finances, equipment, and emotional support. The "why can't they ask family" question is a common one in social work practice too. We have a requirement to look to family first in terms of support, which is not a bad thing, but we need to just get rid of all the assumptions that tag along with it. Families sometimes just don't exist. Sometimes they are also struggling with their own need (mine has multiple generations of disability for example). And sometimes they are the locus of abuse and harm, even if you don't notice it.

More and more I see the suggestion to "just go private" for assessment or support from well-meaning parents (and at times, professionals). Again, an assumption that this is an option. Then a pushback suggests that maybe you are not prioritising your children if you "don't want to pay".

Excuse me? Hello, parent blame! Yes, you are wrapping it up in caring language, but that is exactly what you are doing. Because you sit in a privileged position where money or other forms of resources are available to you - and, more importantly, choice - you may argue you have also had to compromise or adjust. But you are still able to spend £100s, and still be alive.

So, for those of us where choice is hampered by finance, location, or multiple need, there is no choice. We wait for the service you argue is substandard. We wait, and wait, and wait. And all that time, our access to resources gets eaten away further as our emotional resources deplete. We are left behind.

My childhood opportunities were not great. I experienced abject poverty as a child. My mum was a 'professional'. She battled with knowing her children were not getting what they needed and what she could do within her means to get by. We had a maelstrom of mental health, disability, social exclusion, social expectation, bullying and in-work poverty that meant she was wading through mud to get through the day rather than ability to make larger choices around taking us out of school, giving up work, doing what's she really wanted to do for us and for her. I am in awe of her as she fought stigma, shame, and regret (and still does). She did her best but knows it could have been better for us.

That was over 30 years ago. Where is the change?

Buying noise cancelling headphones, weighted blankets, iPad, Grammarly, AAC, mobility aides that actually fit and work for you, travel insurance, and holidays. All these are items that are not free, are not freely available but we know can make a massive difference to everyday life and self-preservation. It is not an equal experience. If you grew up in a family that protected, nurtured, and understood you; if you had financial stability; if you had access to welcoming and inclusive clubs, education, and equipment to enable you to learn you will not be experiencing Autism in this socially constructed world, the same way as those who haven't.

This transfers into adulthood. The exhaustion of fighting and surviving to get to the other side of school. The fight to argue resources for independent living. The battle to be seen as worthy of education or being able to work in the job you want to and have lots to offer. Always pushing against the tide of stigma and discrimination. Fighting my own inner demons and internalised ableism of feeling good enough or needing to prove my worth. Wondering at times who I am doing all this for?

As I age, I find that what I have battled for (a career, a home of my own) has to be maintained but my needs are hampered by time and a battered body and mind that struggles with the pace of the everyday. But if I give up, I lose everything for me and my family. So, I have to keep going. I am stuck in being out of poverty but on a cliff edge of returning when my body gives up (and it will). I may have access to resources for now, but it is not a long-term reality.

You need resources to enter, to maintain, and to thrive in life as an Autistic person. Society accepts you more perhaps as someone useful to it. Your own self-worth is the cost. Can't work? Need support? Can't participate? Guess what, you are not worth the risk.

Communities, cultures, and systems are not always the safe spaces we assume when it comes to resources though. A lifetime of limited means and gatekeeping support leaves a whiff of survival of the fittest. We are so used to fighting that we don't notice it amongst ourselves. Acknowledging those who may require more support, for example, contradicts the narrative of strength in communities who have strived for so long to challenge and overcome oppression based on those dominant discourses. Racism and ableism for example are so intertwined, that we can't focus on one without the other. Yet we do. In social work and in the Autistic community, we are not immune. The social constructs of prejudice and discrimination exist within cultures and communities, and we must seek to dismantle them all. Intellectual and physical superiority only seeks to perpetuate the myths of race, capability, and patriarchy. We doff our caps to our masters of white supremacy who benefit from our "less than" status and perpetuate the perception of 'more' and 'less deserving' access to resources and wealth. The division seeks to perpetuate dominance and power. But not for us.

I've noticed especially over the last couple of years, a social media increase in voices and self-advocacy which is great. But I've also noticed an assumption that this is available to everyone (to do and to receive). I've noticed that the loudest voices are associated often with broader groups or organisations and, as such, have access to more means, space, and time than perhaps the individual who wants to be heard but is not carried forth by other louder voices. Or limited access to technical items that would make the task doable.

I love the advocates who recognise this and support each other. Who run alongside each other yet keep to their lanes. Who approach their own cultural learning with humility. My worry is that this doesn't always happen, and we are shifting, drifting towards power pockets in our community. Marginalisation within the marginalised. It's not even about disagreeing with the message. It's about who has the resources to command the available space. It is the dangerous assumption of meritocracy.

I notice the development of organisations who invite you in, but with a joining fee. And I'm curious. What will I get if I join? Opportunity? Prestige? Will what I have to say or offer mean more with a subscription? I sit conflicted as I totally agree with Autistic people being paid or financially supported for their labour in education, advocating and pushing the Neurodiversity paradigm to achieve equity. However, this feels different; corporate, monetised, and, arguably, exclusive and excluding.

I guess this is my note of caution as we strengthen our voice, as we garner our pool of community resources. Remember we are not living equally. So please, carry us with you and recognise the difference. Don't emulate oppression in the space you control. Whether you are an Autistic advocate or an ally to the community, don't forget to check where the resources lie, and what you may need to do to enable equity. Don't feed into the "poverty propaganda" (Shildrick, 2018, pg 23).

And social workers, this is where your profession steps up. That bus pass, that personal budget, that discussion around education, that observed minimisation of need due to stigma, that recognition of prejudice. What do they really mean to that person's everyday and future?

A sk the question.

Name the oppression.

Challenge the discrimination.

Be the resource.

BASW and CWIP. (2019). Anti-poverty Practice Guide for Social Work. Birmingham. British Association of Social Workers https://www.basw.co.uk/system/files/resources/Anti%20Poverty%20Guide%20A42.pdf (Accessed 20th June 2021)

Bywaters, P., Skinner, G., Cooper, A., Kennedy, E. and Malik, A. (2022) The Relationship Between Poverty and Child Abuse and Neglect: New Evidence. Nuffield. Available at: https://research.hud.ac.uk/media/assets/document/hhs/RelationshipBetweenPovertyChildAbuseandNeglect_Report.pdf (Accessed: 25 April 2022)

Francis-Devine, B.(2022) Poverty in the UK: Statistics, House of Commons Library. (Online). Available at: https://researchbriefings.files.parliament.uk/documents/SN07096/SN07096.pdf (Accessed: 30th July 2022)

Shildrick, T (2018) Poverty Propaganda: exploring the myths, Bristol, Policy Press

This piece is based on my observations locally, my professional experiences (in practice and academically) and across the social media context. I've been musing over this for a while. It is something that is both spoken and unspoken in differing ways. I am reflecting on the impact of poverty, access to resources and the Autistic lived experience.

It's alluded to in the media at the moment and in general conversation that cost of living is a topic of concern for most people for the first time in 20 years. It's a national issue and as such is described as a crisis. It seems it is now OK to talk about it, as it affects the majority. Yet some of us have lived with poverty far beyond our own lifetimes.

Poverty is not missing out on that second holiday abroad this year. Nor is it not being able to afford a new build home. Poverty is when you have no means to acquire what you need to live on a basic day-to-day basis without being at the expense of something else. The eat vs heat situation, for example,or the lack of provision for something essential for you to function. It is an accessibility issue. It is an inclusion issue. It is a life chances issue. It is a life-defining issue and it can be a life-ending issue.

You only have a choice if you have the resources to make that choice. Physically, socially, emotionally, and yes financially.

The Social Work Role

Poverty is oppressive. Poverty is oppression. This is because poverty is determined as a social construct. It is a message to you about your worth, your value and your status in the society you live in. It does not only mean the distribution of wealth but the distribution of resources.

We do know quite a bit about the impact and spread of poverty actually. We know that it negatively affects life chances on a long-term basis (e.g. Bywaters et al 2022). We also know that different identity groups experience poverty disproportionately. For example, families with one or more disabled members experience poverty at a higher rate (31%) compared to families where disability is not an identity (19%) in the UK (Francis-Devine 2022). We also know that the intersection of marginalised identities further impacts on the risk of experiencing poverty (Bywaters et al 2022).

Our role as social workers is to be explicit about poverty, its impact and how we can support within these experiences and enable people to move out of poverty (see BASW's Anti-Poverty Practice Guide ). It needs to be part of our language with families, our assessment of need and risk, and within our planning with those we work with. It needs to move from the back of our minds to the forefront of our actions.

I would like to focus on how unequal distribution of resources impacts Autistic people. To me, being Autistic and living autistically is experienced differently depending on what you have access to. It could be financial resources, but we also can experience social poverty where our access to social networks and support can be very, very different.

I have lost count of the number of times I have been asked if my family can help (they can't), or if there is "someone who can support with this" (whatever "this" happens to be). This is not a reality for some of us. It just doesn't exist. But the assumption doesn't go away, and it has led me to be excluded from access to various things including finances, equipment, and emotional support. The "why can't they ask family" question is a common one in social work practice too. We have a requirement to look to family first in terms of support, which is not a bad thing, but we need to just get rid of all the assumptions that tag along with it. Families sometimes just don't exist. Sometimes they are also struggling with their own need (mine has multiple generations of disability for example). And sometimes they are the locus of abuse and harm, even if you don't notice it.

More and more I see the suggestion to "just go private" for assessment or support from well-meaning parents (and at times, professionals). Again, an assumption that this is an option. Then a pushback suggests that maybe you are not prioritising your children if you "don't want to pay".

Excuse me? Hello, parent blame! Yes, you are wrapping it up in caring language, but that is exactly what you are doing. Because you sit in a privileged position where money or other forms of resources are available to you - and, more importantly, choice - you may argue you have also had to compromise or adjust. But you are still able to spend £100s, and still be alive.

So, for those of us where choice is hampered by finance, location, or multiple need, there is no choice. We wait for the service you argue is substandard. We wait, and wait, and wait. And all that time, our access to resources gets eaten away further as our emotional resources deplete. We are left behind.

My childhood opportunities were not great. I experienced abject poverty as a child. My mum was a 'professional'. She battled with knowing her children were not getting what they needed and what she could do within her means to get by. We had a maelstrom of mental health, disability, social exclusion, social expectation, bullying and in-work poverty that meant she was wading through mud to get through the day rather than ability to make larger choices around taking us out of school, giving up work, doing what's she really wanted to do for us and for her. I am in awe of her as she fought stigma, shame, and regret (and still does). She did her best but knows it could have been better for us.

That was over 30 years ago. Where is the change?

Buying noise cancelling headphones, weighted blankets, iPad, Grammarly, AAC, mobility aides that actually fit and work for you, travel insurance, and holidays. All these are items that are not free, are not freely available but we know can make a massive difference to everyday life and self-preservation. It is not an equal experience. If you grew up in a family that protected, nurtured, and understood you; if you had financial stability; if you had access to welcoming and inclusive clubs, education, and equipment to enable you to learn you will not be experiencing Autism in this socially constructed world, the same way as those who haven't.

This transfers into adulthood. The exhaustion of fighting and surviving to get to the other side of school. The fight to argue resources for independent living. The battle to be seen as worthy of education or being able to work in the job you want to and have lots to offer. Always pushing against the tide of stigma and discrimination. Fighting my own inner demons and internalised ableism of feeling good enough or needing to prove my worth. Wondering at times who I am doing all this for?

As I age, I find that what I have battled for (a career, a home of my own) has to be maintained but my needs are hampered by time and a battered body and mind that struggles with the pace of the everyday. But if I give up, I lose everything for me and my family. So, I have to keep going. I am stuck in being out of poverty but on a cliff edge of returning when my body gives up (and it will). I may have access to resources for now, but it is not a long-term reality.

You need resources to enter, to maintain, and to thrive in life as an Autistic person. Society accepts you more perhaps as someone useful to it. Your own self-worth is the cost. Can't work? Need support? Can't participate? Guess what, you are not worth the risk.

Communities, cultures, and systems are not always the safe spaces we assume when it comes to resources though. A lifetime of limited means and gatekeeping support leaves a whiff of survival of the fittest. We are so used to fighting that we don't notice it amongst ourselves. Acknowledging those who may require more support, for example, contradicts the narrative of strength in communities who have strived for so long to challenge and overcome oppression based on those dominant discourses. Racism and ableism for example are so intertwined, that we can't focus on one without the other. Yet we do. In social work and in the Autistic community, we are not immune. The social constructs of prejudice and discrimination exist within cultures and communities, and we must seek to dismantle them all. Intellectual and physical superiority only seeks to perpetuate the myths of race, capability, and patriarchy. We doff our caps to our masters of white supremacy who benefit from our "less than" status and perpetuate the perception of 'more' and 'less deserving' access to resources and wealth. The division seeks to perpetuate dominance and power. But not for us.

I've noticed especially over the last couple of years, a social media increase in voices and self-advocacy which is great. But I've also noticed an assumption that this is available to everyone (to do and to receive). I've noticed that the loudest voices are associated often with broader groups or organisations and, as such, have access to more means, space, and time than perhaps the individual who wants to be heard but is not carried forth by other louder voices. Or limited access to technical items that would make the task doable.

I love the advocates who recognise this and support each other. Who run alongside each other yet keep to their lanes. Who approach their own cultural learning with humility. My worry is that this doesn't always happen, and we are shifting, drifting towards power pockets in our community. Marginalisation within the marginalised. It's not even about disagreeing with the message. It's about who has the resources to command the available space. It is the dangerous assumption of meritocracy.

I notice the development of organisations who invite you in, but with a joining fee. And I'm curious. What will I get if I join? Opportunity? Prestige? Will what I have to say or offer mean more with a subscription? I sit conflicted as I totally agree with Autistic people being paid or financially supported for their labour in education, advocating and pushing the Neurodiversity paradigm to achieve equity. However, this feels different; corporate, monetised, and, arguably, exclusive and excluding.

I guess this is my note of caution as we strengthen our voice, as we garner our pool of community resources. Remember we are not living equally. So please, carry us with you and recognise the difference. Don't emulate oppression in the space you control. Whether you are an Autistic advocate or an ally to the community, don't forget to check where the resources lie, and what you may need to do to enable equity. Don't feed into the "poverty propaganda" (Shildrick, 2018, pg 23).

And social workers, this is where your profession steps up. That bus pass, that personal budget, that discussion around education, that observed minimisation of need due to stigma, that recognition of prejudice. What do they really mean to that person's everyday and future?

A sk the question.

Name the oppression.

Challenge the discrimination.

Be the resource.

BASW and CWIP. (2019). Anti-poverty Practice Guide for Social Work. Birmingham. British Association of Social Workers https://www.basw.co.uk/system/files/resources/Anti%20Poverty%20Guide%20A42.pdf (Accessed 20th June 2021)

Bywaters, P., Skinner, G., Cooper, A., Kennedy, E. and Malik, A. (2022) The Relationship Between Poverty and Child Abuse and Neglect: New Evidence. Nuffield. Available at: https://research.hud.ac.uk/media/assets/document/hhs/RelationshipBetweenPovertyChildAbuseandNeglect_Report.pdf (Accessed: 25 April 2022)

Francis-Devine, B.(2022) Poverty in the UK: Statistics, House of Commons Library. (Online). Available at: https://researchbriefings.files.parliament.uk/documents/SN07096/SN07096.pdf (Accessed: 30th July 2022)

Shildrick, T (2018) Poverty Propaganda: exploring the myths, Bristol, Policy Press

# data[].attributes.attachment_link.title
Poverty, Resource Distribution and the Autistic Experience

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Access all Areas? Not for Everyone. This piece is based on my observations locally, my professional experiences (in practice and academically) and across the social media context. I've been musing over this for a while. It is something that is both spoken and unspoken in differing ways.

# data[].attributes.headline
Barriers to healthcare and self reported adverse outcomes for autistic adults. Mary Doherty at al. 

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Barriers to healthcare and self reported adverse outcomes for autistic adults. Mary Doherty at al. 

# data[].attributes.body
https://bmjopen.bmj.com/content/12/2/e056904

# data[].attributes.attachment_link.title
Barriers to healthcare and self-reported adverse outcomes for autistic adults: a cross-sectional study

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Objectives Autistic people experience poor physical and mental health along with reduced life expectancy compared with non-autistic people. Our aim was to identify self-reported barriers to primary care access by autistic adults compared with non-autistic adults and to link these barriers to self-reported adverse health consequences.

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Article on ‘Seeing the Unseen - why are autistic women so often overlooked?’ (film available via Vimeo)

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Article on ‘Seeing the Unseen - why are autistic women so often overlooked?’ (film available via Vimeo)

# data[].attributes.attachment_link.readable_text
Seeing the Unseen directed by Bjarney Lúðvíksdóttir and Kristján Kristjánsson is a documentary exploring the role that autism plays in the lives of 17 Icelandic women, and asking why autistic women and girls have remained invisible in society for so long. It showed at Glasgow Film Festival 2020 and is available to rent now.

As any person living with disability will tell you, society penalises, torments and demonises what it perceives to be 'other' - and this narrative isn't new. For young women living with autism, it's the norm. This documentary demonstrates how the attitude from society leads to misdiagnosis of autism in girls - primarily as anxiety and depression. Because of this, most women don't receive the correct diagnosis and subsequent support until much later in life, when they are already isolating, relying on benefits and facing additional subsequent health issues.

Autism is most commonly diagnosed in, and associated with, men, but men present considerably different and much more visible behaviours. Women have gone unseen on the autism spectrum for so long because they are excellent at masking their natural behaviours - a performance which is confusing, isolating and exhausting. Many women in the film refer to 'burnout' as a regular experience for autistic women who are misdiagnosed. They are deemed atypical against autistic men.

This film seeks to reveal what has been unseen, misunderstood and mislabelled for so long.

The narrative of the film is powerfully delivered through the bookended reading of a Kristy Forbes poem, 'We Are Proud Autistic Women', performed by Kristín Vilhjálmsdóttir, which highlights the systemic injustices towards women who exhibit atypical behaviours or neurodivergence. Importantly, it celebrates the beauty in being an autistic woman. The myriad experiences and expressions of the women in this film easily demonstrate that we do not exist in binaries, rather we are on a spectrum. We have no fixed position on it - the whole breadth of it is normal for someone - 'we are more typical than typical people, usually.'

The unsettling truth this documentary reveals is that many women live in a world of incorrect labels which lead to a lack of support both at work, in relationships and in health-care. Diminishing mental health results from this, and anxiety increases. Many women spoke of feeling isolated, 'terribly alone'. As empathetic, self-aware and intelligent people, they often self-analyse to a crippling degree when trying to figure out why they never fit in, why they always 'felt odd' around neurotypical people. Over time, they shifted towards total isolation and many spoke of harming themselves, or being institutionalised. Many were targeted by men trying to seduce them online to gain entry to the country, and others lived in long-term abusive relationships.

The voices of the women in this film demand to be heard. Their experiences reveal where society is actively impacting their lives negatively, highlighting the desperate need for better awareness, understanding and resources. Autistic women typically focus on their interests; turning them into great strengths, and several women in the film had obtained more than one degree in their area of interest. They work extremely well in these areas, but it doesn't mean their lives are not without other challenges. One woman said 'I can write you a scientific paper in three hours no problem, it's as easy as drinking water, but I find it hard to shower'. The typical binaries of socially expected and accepted behaviours simply do not apply.

The women in this film highlight how early diagnosis, and support in social, working and health-care settings would improve their quality of life from a young age, without them needlessly burdening the social system, due to anxiety, stress and burnout. It's about protecting the generations to come.

The women shared how they felt understood and empowered following diagnosis. Both 'stable and instable' - in finally understanding why they are different, but also in realising the way society will perceive their difference. Finding other women with the same experiences was often the first time autistic women felt understood.

The film ends with the closing lines of the poem, 'We are deeply connected to something out of this world, a universal energy, the Earth, we do not entirely understand it. But it leads us. We are illuminated by the moon. Swayed by the oceans, unravelled by the elements, grounded by the Earth.' This captures the beauty and the vastness of the autistic experience, and it challenges the common perception that autistic people 'do not feel'.

I couldn't help but wonder, how many women, like myself, will feel as though they are finally making sense, finally feeling seen, as they watch this. I wonder too, how many medical professionals will have their perceptions and understanding of Autism shattered. Insight and understanding of ourselves is arguably the most valuable part of the dialogue around Autism, and it has too-long been neglected in the medical narrative. 'It's a human rights issue" the women in the film say.

"We've worn many labels of disorder... many times misdiagnosed. Or - we've pathologized all of these very normal characteristics of female Autism."

It's a testament to the power of community, of voice and expression, in finding out who we are. And from that, finding out who we can be.

Seeing the Unseen is available to rent via Vimeo for £6.31.

Follow:

Twitter: @unseenautism

The article is published as part of the Diverse Critics programme, delivered in partnership with Creative Scotland and The Skinny.

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Seeing the Unseen - why are autistic women so often overlooked? - Disability Arts Online

# data[].attributes.attachment_link.description
Seeing the Unseen directed by Bjarney Lúðvíksdóttir and Kristján Kristjánsson is a documentary exploring the role that autism plays in the lives of 17 Icelandic women, and asking why autistic women and girls have remained invisible in society for so long. It showed at Glasgow Film Festival 2020 and is available to rent now.

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Twitter #Thread things that made me realise I actually was autistic (at the age of 58)

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Twitter #Thread things that made me realise I actually was autistic (at the age of 58)

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#Thread

Things that made me realise I actually was autistic...

...when I got my autism diagnosis at the age of 58.

#ActuallyAutistic
#LateDiagnosis
#AllAutistics
1/

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#Thread

Things that made me realise I actually was autistic...

...when I got my autism diagnosis at the age of 58.

#ActuallyAutistic
#LateDiagnosis
#AllAutistics
1/

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#Thread

Things that made me realise I actually was autistic...

...when I got my autism diagnosis at the age of 58.#ActuallyAutistic#LateDiagnosis#AllAutistics
1/
— Autistic Rose (@NortherlyRose) January 21, 2021

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#Thread

Things that made me realise I actually was autistic...

...when I got my autism diagnosis at the age of 58.

#ActuallyAutistic
#LateDiagnosis
#AllAutistics
1/

# data[].attributes.attachment_link.metadata.attachment_props.original_text
#Thread

Things that made me realise I actually was autistic...

...when I got my autism diagnosis at the age of 58.

#ActuallyAutistic
#LateDiagnosis
#AllAutistics
1/

# data[].attributes.attachment_link.metadata.attachment_props.text
#Thread

Things that made me realise I actually was autistic...

...when I got my autism diagnosis at the age of 58.

#ActuallyAutistic
#LateDiagnosis
#AllAutistics
1/

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Twittter #thread on being autistic AND being a carer 

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Twittter #thread on being autistic AND being a carer 

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#Thread
Apart from parenting children we rarely discuss being #autistic AND being a #carer.
I have personal and professional experience, and I’m interested in why it’s under explored.
Search ‘autistic carer’ and it’s assumed we’re the one being cared for.
#AutismAcceptanceWeek
1/

# data[].attributes.wish_content.attachment_props.original_text
#Thread
Apart from parenting children we rarely discuss being #autistic AND being a #carer.
I have personal and professional experience, and I’m interested in why it’s under explored.
Search ‘autistic carer’ and it’s assumed we’re the one being cared for.
#AutismAcceptanceWeek
1/

# data[].attributes.attachment_link.embed_code
#Thread
Apart from parenting children we rarely discuss being #autistic AND being a #carer.
I have personal and professional experience, and I’m interested in why it’s under explored.
Search ‘autistic carer’ and it’s assumed we’re the one being cared for.#AutismAcceptanceWeek
1/
— Autistic Rose (@NortherlyRose) March 28, 2022

# data[].attributes.attachment_link.metadata.attachment_props_source.data.text
#Thread
Apart from parenting children we rarely discuss being #autistic AND being a #carer.
I have personal and professional experience, and I’m interested in why it’s under explored.
Search ‘autistic carer’ and it’s assumed we’re the one being cared for.
#AutismAcceptanceWeek
1/

# data[].attributes.attachment_link.metadata.attachment_props.original_text
#Thread
Apart from parenting children we rarely discuss being #autistic AND being a #carer.
I have personal and professional experience, and I’m interested in why it’s under explored.
Search ‘autistic carer’ and it’s assumed we’re the one being cared for.
#AutismAcceptanceWeek
1/

# data[].attributes.attachment_link.metadata.attachment_props.text
#Thread
Apart from parenting children we rarely discuss being #autistic AND being a #carer.
I have personal and professional experience, and I’m interested in why it’s under explored.
Search ‘autistic carer’ and it’s assumed we’re the one being cared for.
#AutismAcceptanceWeek
1/

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Inside Our Autistic Minds - Chris Packham 

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Inside Our Autistic Minds - Chris Packham 

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Chris Packham helps other autistic people reveal what's going on inside their minds.

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Autism as an adult: ‘On the many days I spend alone, I forget how to talk.          Susan Dunne. 

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Autism as an adult: ‘On the many days I spend alone, I forget how to talk.          Susan Dunne. 

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was diagnosed with an autism spectrum disorder in my 40s. Like many adults who've slipped through the diagnostic net due to being high-functioning, born too early, or simply female, I've spent a lifetime trying to figure out the lifelong social and sensory difficulties of autism. That none of us wake up cured at 18 still appears to mystify some professionals. That we might still benefit from some support, however late the diagnosis, does too.

Many of us have garnered a few other labels along the way: freak, geek and weirdo from the bullying fraternity; personality disorder, depressive and awkward sod from the mental health fraternity. Psychiatry had a different take on it: in autism I had a neurological learning difference which did not render me mad, bad or dangerous to know - always good to hear - and nor was I intellectually challenged. I was told I was "too high-functioning" to benefit from any autism services (not that there were any in the vicinity anyway) and that I must have worked it out by now. I was discharged with a letter wishing me well and a website address for the National Autistic Society (NAS).

In other words, it was a case of "work it out on your own". Nothing new there: I'm not alone in receiving a late diagnosis where post-diagnostic support is little more than a website address. Statutory guidance for the Autism Act 2009 recommends that health and care should work together to ensure those diagnosed are signposted to a social care needs assessment. The NAS describes progress on its implementation as "patchy and subject to regional variation". In reality, this often means the assessment is inappropriate, inadequate or, as in my case, non-existent.

The assumption that we must have worked it out by now if we're still walking, talking and have a pulse can hide a grim reality of difficult, isolated and unfulfilled lives. Over time I've learned the hard way how to present well in public but behind closed doors it's a different matter. I live in a house where the lights, fridge, cooker and washing machine have packed up one by one but I lack the skills to sort it out, and I'd rather live in darkness than have someone I don't know in my personal space. I may be a graduate with a high IQ but I struggle financially due to a lifetime of subsisting on a single, small part-time income. I lack close family or friends to support me and on the many days I spend alone I am liable to forget how to talk. Sometimes someone just giving me a reality check of the "have you eaten today?" kind would be useful.

Support might be useful for other reasons too. Late diagnosis may eventually bring closure and reconciliation, but not before a weeping and gnashing of teeth for which nothing prepares you. For nearly a year after diagnosis I wept and gnashed in equal measure, mainly fuelled by regret for what felt like a train wreck of a life. Here I was, all these years on, finding out why but still no one to point the way, welcome me into the club or tell me where to hang my coat. This autism business sucked.

Left to my own devices, I turned to the internet, where I discovered there were others out there trying to make sense of it all too - an online tribe for the tribeless, a diaspora of aliens in a neurotypical universe. For some, online communication is a lifeline. For others, like me, it was the only available option and, as someone not born in the digital age, not necessarily the preferred one.

But the internet was all I had and it has served me well. Slowly, that which had always been baffling and frustrating began to make some kind of sense. These days I understand my quirky behaviour, that not everyone prizes truth over tact and why my best friends have always had four legs. Over time I've come to accept autism for what it is: a lifelong neurological difference that comes with gifts and limitations. In the long-term, diagnosis has allowed me more self-forgiveness and self-understanding and I'm much happier because of it.

But some support in reaching that place would have been useful. So would occasionally being asked: "Do you need any help?"
Susan Dunne is the author of A Pony in the Bedroom, a memoir of life with undiagnosed autism. She is a postgraduate student in aspergers and autism at Sheffield Hallam University and a regular columnist for Autism Daily Newscast.

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Autism as an adult: 'On the many days I spend alone I forget how to talk'

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was diagnosed with an autism spectrum disorder in my 40s. Like many adults who've slipped through the diagnostic net due to being high-functioning, born too early, or simply female, I've spent a lifetime trying to figure out the lifelong social and sensory difficulties of autism.

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Characteristics of older autistic adults a systematic review of the literature. Venus W S Tse, Jiedi Lei et al.

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Characteristics of older autistic adults a systematic review of the literature. Venus W S Tse, Jiedi Lei et al.

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The Scholarly Neglect of Black Autistic Adults in Autism Research.             Kayla M Malone et al.

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The Scholarly Neglect of Black Autistic Adults in Autism Research.             Kayla M Malone et al.

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The Scholarly Neglect of Black Autistic Adults in Autism Research | Autism in Adulthood

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Black autistic individuals, regardless of age, have not been centered in autism research. Instead, they often exist on the margins—on the periphery of autism research. In fact, Black autistic adults are largely absent from the literature. Most participants in autism research are majority-white autis…

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Old age in Adults with ASD: Psychosocial Aspects - a Systematic Review.     Monika Parchomiuk

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Old age in Adults with ASD: Psychosocial Aspects - a Systematic Review.     Monika Parchomiuk

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Old Age in Adults with ASD: Psychosocial Aspects-a Systematic Review - Review Journal of Autism and Developmental Disorders

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The present article is a systematic review of literature, examining the extent to which there is interest in old age of people with autistic spectrum disorders (ASD) and the issues in this field that are analyzed. The focus was on psychosocial aspects of functioning. The conducted literature review, using databases, covered the years 2000-2019.

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Traumatic life experiences and post-traumatic stress symptoms in middle-aged and older adults with and without autistic traits. Gavin R Stewart et al.

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Traumatic life experiences and post-traumatic stress symptoms in middle-aged and older adults with and without autistic traits. Gavin R Stewart et al.

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NDTi - Ageing and Autism: A BIG conversation 

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NDTi - Ageing and Autism: A BIG conversation 

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We use cookies to improve your experience on our website. Click here to learn more and change your settings. Otherwise, we'll assume you're OK to continue.

I Understand

We have created this space for older autistic people to share their worries and their hopes about their lives in the hope of building a conversation around what it means to be growing old as an autistic person. We have asked a few of our autistic associates and contacts to write 'conversation starters' explaining what matters to them and the issues that need to be addressed to help older autistic people live happier lives. In some cases, they offer possible solutions.

Read a conversation starter

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Ageing and Autism: A BIG conversation - NDTi

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We have created this space for older autistic people to share their worries and their hopes about their lives in the hope of building a conversation around what it means to be growing old as an autistic person.

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"Older Adults with ASD: The Consequences of Aging." Insights from a series of special interest group meetings held at the International Society for Autism Research 2016-2017. Amanda Roestorf et al. 

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"Older Adults with ASD: The Consequences of Aging." Insights from a series of special interest group meetings held at the International Society for Autism Research 2016-2017. Amanda Roestorf et al. 

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Social camouflaging in autism: Is it time to lose the mask?  Will Mandy et al. 

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Social camouflaging in autism: Is it time to lose the mask?  Will Mandy et al. 

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Ageing and autism: A longitudinal follow-up study of mental health and quality of life in autistic adults.

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Ageing and autism: A longitudinal follow-up study of mental health and quality of life in autistic adults.

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Amanda Roestorf, Patricia Howlin and Dermot M Bowler

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Autism Research Group (ARG), Department of Psychology, City, University of London, London, United Kingdom

Department of Clinical Psychology, Institute of Psychiatry, Psychology and Neuroscience, King's College London, London, United Kingdom

Background: Poor mental health is known to adversely affect functional abilities, social isolation, and quality of life (QoL). It is, therefore, crucial to consider the long-term impacts of mental health conditions as autistic adults grow older.

Objectives: To explore, in a group of community-based autistic adults, the extent of: (i) autistic traits, co-occurring physical and mental health conditions; (ii) age-related differences in those conditions, and changes over time; and (iii) their impact on everyday living and QoL.

Method: About Sixty-eight autistic adults (aged 19-80 years) participated in the first study (T1); 49 participants from T1 took part in a follow-up at T2 (mean retest interval 2.4 years). Standardised self-report measures of autistic traits, mental health, and QoL were completed at both time points.

Results: Over two-thirds (71%) of autistic adult participants experienced at least one co-occurring condition, and over a third (37%) met the criteria for three or more co-occurring conditions. Mental and physical health difficulties were related to autistic traits and difficulties in everyday life and were consistent predictors of poor QoL at T1 and T2.

Conclusion: Mental health difficulties in autism persisted into older age and did not improve over time. These findings have important implications for mental health provision for autistic adults in older age.

Introduction

There is an increasing drive for support of older adults in the general population, related to cognitive change, well-being, social isolation, and physical healthcare (e.g., Wright et al., 2016; Kelly et al., 2017; Wu, 2020). Studies in gerontology provide insights into the selective challenges of ageing, and the strategies that enable older adults to maintain cognitive functions (e.g., Salthouse, 2004), social integration, and better quality of life (QoL; Hornby-Turner et al., 2017). There are various definitions of QoL and Subjective well-being (SWB) but both concepts encompass domains of physical, psychological, environmental, and social well-being. The World Health Organization (2002), in their report on Active Ageing suggests that 60 years of age should be a marker of "older" adulthood, but caution that:

"chronological age is not a precise marker for the changes that accompany ageing... [since] There are dramatic variations in health status, participation and levels of independence among older people of the same age"

Autism spectrum disorder (henceforth "autism") is a lifelong neurodevelopmental condition that is estimated to occur in at least 1% of the general population ( American Psychiatric Association, 2013; Lord et al., 2020). Autism is characterized by a specific yet diverse profile of characteristics that include differences in social communication and social interactions; a strong need for routine and sameness that includes differences in information processing and thinking, specific patterns of interests, and sensory sensitivities ( Lord et al., 2018). In turn, these differences can affect everyday functioning and autonomy, social relationships, mental health, and QoL ( Shattuck et al., 2011; Geurts and Vissers, 2012; Howlin et al., 2013; Fortuna et al., 2015; Lever and Geurts, 2016). In addition, recent evidence suggests that increased difficulties related to depression, sleep quality, and general psychological well-being are also determinants of poor QoL ( Lawson et al., 2020).

There has been relatively little systematic research into the impact of ageing among autistic adults, whether diagnosed in childhood or later life ( Mason et al., 2022; and see Magiati et al., 2014; Steinhausen et al., 2016, for systematic reviews). Information on the prevalence or persistence of mental health difficulties in older autistic adults is particularly limited; similarly, little is known about QoL changes in older age or the degree to which autism-related difficulties and mental health affect QoL (e.g., Howlin and Taylor, 2015; Roestorf and Bowler, 2016; Wise et al., 2017; Mason et al., 2018). However, there is evidence that autistic adults experience more physical and mental health difficulties than age-matched non-autistic peers ( Croen et al., 2015; Hirvikoski et al., 2016; Zerbo et al., 2019; but see Lever and Geurts, 2016), with approximately 70-80% of autistic individuals having co-occurring physical and/or mental health conditions (e.g., Bishop-Fitzpatrick and Rubenstein, 2019; Hand et al., 2020). These difficulties are exacerbated by the lack of access to appropriate services in adulthood and across the lifespan ( Parr, 2016; Wright et al., 2016; Robison, 2019). Some recent research suggests a generally poorer QoL in older autistic adults (e.g., Van Heijst and Geurts, 2015; Bishop-Fitzpatrick et al., 2016; Roestorf and Bowler, 2016; Mason et al., 2018; Yarar Zivrali et al., in press; and see Ayres et al., 2017 for a meta-analysis) although findings are inconsistent (see Chiang and Wineman, 2014 for a review). Factors related to social support, long-term relationships, engaging in meaningful employment, and lifestyle autonomy have been linked to positive mental health and improved QoL (e.g., Ratto and Mesibov, 2015; Van Heijst and Geurts, 2015; Lever and Geurts, 2016; Mason et al., 2018; Park et al., 2019). However, the cumulative effects of long-term, co-occurring, physical or psychiatric conditions on everyday functioning and QoL are largely unknown ( Howlin and Moss, 2012; Howlin et al., 2013; Kats et al., 2013). Similarly, little is known about the availability or effectiveness of health, care and social support services to accommodate the individual differences of older autistic adults who may need continued support related to autistic traits, mental/physical health difficulties, or daily living skills ( Mason et al., 2019; Charlton et al., 2021, 2022; Lord et al., 2021; Oakley et al., 2021). Thus, more longitudinal research is needed to evaluate the effects of long-term co-occurring conditions and their relation to QoL in older age ( Michael, 2016; Oakley et al., 2021). Stress and anxiety-related difficulties have substantial implications for the social functioning, cognitive abilities, and adaptive behaviours of autistic individuals ( Maisel et al., 2016; Wallace et al., 2016; South et al., 2017), and are further compounded by intolerance of uncertainty, and aversiveness to emotional experiences whilst simultaneously experiencing difficulties identifying and interpreting emotions (e.g., Maisel et al., 2016). Because of the complex associations between the clinical features of anxiety and autism, it remains important for clinicians to dissociate core autistic symptoms from mental health conditions and physical health, when considering the primary care and service needs of autistic people across the lifespan ( Roestorf et al., 2019; Oakley et al., 2021). A critical evaluation is needed of individualised long-term support needs, alongside physical and mental health as an autistic person grows older (e.g., Charlton et al., 2022).

The present study focuses primarily on depression and anxiety symptoms since these are the most common mental health conditions in autism (e.g., Maisel et al., 2016; Hollocks et al., 2019). The negative effects of depression are far-reaching in terms of cognitive, social and psychological functioning, reduced QoL, increased disability, and premature mortality ( McClintock et al., 2010; Khanna et al., 2014; Mason et al., 2019; Lawson et al., 2020), and these effects may be exacerbated in individuals with co-occurring intellectual disability and/or neurodevelopmental conditions including autism (e.g., Coppus, 2013; Ratto and Mesibov, 2015). Long-term mental health difficulties, such as depression, are associated with increased risk of neurocognitive disorders (i.e., dementia; Bauman, 2010), although whether this is increased for autistic individuals is unknown (e.g., Hategan et al., 2017).

Background to the present study

As part of a larger programme of work on ageing in autism, participants completed a wide range of assessments including measures of autism symptomatology, social and behavioural adaptive skills, mental health, quality of life, cognitive, language and memory, and a range of executive functions (see Roestorf and Bowler, 2016; Roestorf, 2018 and section "Measures" below). One part of the programme focused on age-related comparisons between autistic and non-autistic adults (see Roestorf and Bowler, 2016 and Roestorf, 2018); in the present paper, we describe findings from (i) a cross sectional comparison of younger and older autistic adults aged 19-80 years and (ii) a short-term longitudinal study of change over time. Our main aim was to identify any factors that might be related to adverse mental health ( Schwartz and Meyer, 2010) and reduced quality of life of autistic people ( McConachie et al., 2018; Mason et al., 2019; Lawson et al., 2020).

Study aims

Study 1 [First time-point (T1); cross-sectional]

At T1, the study set out to explore (i) the extent of autistic traits and co-occurring physical and mental health difficulties in autistic adults; (ii) age-related differences in these areas through comparisons between younger and older autistic adults; and (iii) how these factors are associated with daily living and QoL.

Study 2 [Second time-point (T2); follow-up]

At T2, we followed-up participants from the T1 study. In addition to replicating the aims of Study 1, the principal aim at T2 was (i) to evaluate the profile of potential age-related changes over time in younger and older autistic adults, related to autistic traits, co-occurring mental health conditions, and QoL. Regression analyses explored (ii) how these factors were associated with QoL over time.

Materials and methods

Ethics

Ethical approval was obtained from the City, University of London Psychology Department Research Ethics Committee PSYETH (UPTD) 13/14 28, for the research project titled: Age-Related Effects on Cognition and Quality of Life in Adults with Autism Spectrum Disorder, published as part of the programme of work submitted for the first author's PhD Thesis ( Roestorf, 2018).

Participants

Procedure for participant selection and recruitment

The study was advertised via the United Kingdom National Autistic Society website and online via the Twitter network of the first author. We aimed to recruit older adults and autistic women as these groups are greatly underrepresented in most autism research. Participants from the research databases at the Autism Research Group and online research recruitment portal at City, University of London were also invited to take part in the study. Informed consent was obtained from all participants prior to enrolment in the study and they were informed of their right to withdraw from the study at any time, without being disadvantaged. Participants were offered £25 as a gratuity for taking part in the research at each time point and received full reimbursement of travel expenses.

The relative lack of studies on ageing in autism means there is no consensus on the definition of 'older' age in this group. For the purpose of the present study, we included autistic adults across a wide age range, with 'older' adults being defined as those aged ≥50 years and 'younger' adults as those aged 18-49 years. Participants were assigned to 'younger' and 'older' age groups at T1 and remained assigned to those same groups at T2 follow-up.

To ensure that participants were able fully to understand all the task requirements English language proficiency was assessed using the Comprehensive Receptive and Expressive Vocabulary Test-Third Edition (CREVT-3; Wallace and Hammill, 2013). Two participants were excluded at this stage as they did not meet the standardised assessment criteria for English fluency (CREVT-3 overall language score > 70; population mean 100, SD 15; see Appendix 1 in Supplementary material).

Sample characteristics

Participants at T1 comprised 68 autistic adults aged 19-80 years (mean 44.1 years, SD 15.5 years), including 37 younger (mean 31.9 years, 10 female) and 31 older adults (mean 58.6 years; seven female). All participants had a formal diagnosis of autism, confirmed by a copy of clinical diagnostic reports obtained at enrolment. Age groups were matched on gender ratio (reported as male and female in this study, no participants identified as transgender or non-binary), years of formal education and general intellectual ability (IQ; measured by Wechsler Adult Intelligence Scales-Fourth Edition; WAIS-IV; Wechsler, 2008; see Table 1 for data, and see Appendix 1 in Supplementary material). Following the T1 study, participants were asked if they would be willing to take part in a subsequent follow-up study (T2).

A total of 49 individuals (72.1% of the T1 sample) agreed to take part at T2. Their ages ranged from 24 to 74 years (Mean 48.4 years), including 25 younger (mean 36.2 years; five female) and 24 older adults (mean 60.9 years; five female; for details see Table 2).

Reasons for non-participation at T2 ( n = 19, 28% of the T1 sample) were: chronic or terminal illness ( n = 7), or death ( n = 2); lost to follow-up, moved to different town, city or country ( n = 2); work commitments, personal difficulties, or family commitments ( n = 5); administrative reasons, or self-exclusion or withdrawal from the project for other reasons ( n  = 3).

Community involvement

Participant well-being was central to all stages of the research. During the study scoping and design, advice was sought from autistic peer researchers in co-creation discussion forums. Participants were consulted throughout the data collection about any adaptations they might require to the study procedures and materials, and every effort was made to incorporate adaptations to meet their individual needs. These adaptations included easy read formats for information about study aims and task instructions, changes to sensory stimuli in the research laboratory, e.g., noise reduction and soft lighting, and frequent breaks between tasks as needed. Every effort was made to ensure that these adaptations did not compromise the methodology or quality of the data.

Procedure

Difficulties related to autistic traits, mental health, and QoL were compared at two time-points: Study 1 focused on T1 cross-sectional comparisons between younger and older groups; Study 2 followed the same participants who took part in T1 and applied the same procedures regarding ethics, sample selection, materials, and assessment. The mean follow-up interval was 2.4 years. At each time point, the measures were conducted face to face in a single session.

Measures

Assessments of IQ, autistic traits, mental health (anxiety, depression), daily functional difficulties, and QoL were carried out at T1 (see Table 1) and repeated at T2 follow-up.

In addition to the measures described below, participants provided information on co-occurring physical and mental health conditions, difficulties related to everyday skills (e.g., self-care, household management, employment, and managing finances), social interaction difficulties, loneliness and isolation, sensory sensitivities, and stress responses experienced as meltdowns and/or shutdowns and related cognitive difficulties in everyday life. This information was captured through semi-structured questions, using the Passport to Individual Autism Support (PIAS), developed by the National Autistic Society (2012).

Intellectual ability profiles

The Wechsler Adult Intelligence Scales-Fourth Edition (WAIS-IV) was administered at T1 and T2 follow-up. The WAIS-IV is a widely used standardised measure to assess intellectual ability profiles in adults aged 16-90 years ( Wechsler, 2008). It comprises 10 core and five supplemental subtests, providing Index scores for Verbal Comprehension (VCI), Perceptual Reasoning (PRI), Working Memory (WMI) and Processing Speed (PSI), and a composite Full-Scale IQ (FSIQ) score.

Autistic traits

At T1, clinical reports confirmed autism diagnosis (see the section Sample Characteristics). Since those reports incorporated a variety of measures, the Autism Diagnostic Observation Schedule-2nd Edition (ADOS-2; Lord et al., 2012) and the Social Responsiveness Scale-2nd Edition (SRS-2; Constantino and Gruber, 2012) were administered to confirm diagnostic reports. The Module 4 (adult) ADOS assessment is reported to have sensitivity of 0.61 ( Bastiaansen et al., 2011; de Bildt et al., 2016); specificity is between 0.50 and 0.84 ( Maddox et al., 2017). The first author was trained in ADOS-2 administration to 0.89 reliability and overseen by a certified ADOS trainer. The ADOS-2 was administered to 50 participants (74%) who consented to complete this assessment. Over a third (37.2%) of assessments in this study were double-coded for inter-rater reliability which was maintained at 0.84 or above. We note that subsequent development of calibrated severity scores (CSS; Hus and Lord, 2014) are now more commonly used as more sensitive measures of autism symptom severity in adults. However, because the CSS algorithm was not available when the present study data were collected, the ADOS data reported here are according to the algorithm in Lord et al. (2012).

The SRS-2 is a self-rated measure of autism-related traits and difficulties based on the DSM-5 ( American Psychiatric Association, 2013) criteria for autism. It provides a Total score and separate domain index scores (T-scores; range 30 to >90, mean 50, SD 10) for Social Communication, Social Motivation, Restricted Interests and Repetitive Behaviours (RRBs), Social Awareness, and Social Cognitive functioning. Studies with autistic adults have reported sensitivity and specificity of 0.85 and 0.83, respectively ( Bölte, 2012). The SRS-2 was administered at T1 and T2 explore possible age-related changes over time.

Physical and mental health

Passport to individual autism support

The PIAS was designed by the National Autistic Society to assist autistic individuals who have difficulties advocating for themselves when accessing health and social care services. The resulting information (see Appendix 3 in Supplementary material; Figure 1) provides a summary of co-occurring conditions and other self-reported difficulties associated with autism, such as sensory sensitivities, limited motor function, and difficulties related to cognitive processing and social interactions ( National Autistic Society, 2012).

Figure 1. Self-reports of difficulties experienced by autistic adults, reported on the Passport to Individual Autism Support (PIAS, National Autistic Society, 2012).

Patient health questionnaire-9-item

The PHQ is a standardised assessment based on DSM-IV ( American Psychiatric Association, 1994) diagnostic classifications for psychiatric conditions. The PHQ is a self-rated questionnaire comprising core items designed to screen for depression and other conditions, including anxiety and panic syndrome, somatoform symptoms (e.g., pain and digestive problems), risk of eating disorders and alcohol abuse. A single item reflects everyday functional difficulties: "How difficult have these problems made it for you to do your work, take care of things at home, or get along with other people?" Scores determine clinical diagnostic thresholds for anxiety- and depression-related conditions, indicated by a minimum number of symptoms, yielding accuracy of 0.85, sensitivity of 0.75, and specificity of 0.90 ( Spitzer et al., 1999). Participants completed the PHQ at T1 and T2, based on symptoms experienced during the previous 4-week (major depression, panic/other anxiety syndromes); 2 weeks (other depressive syndrome); 3 months (eating disorders); or 6 months (alcohol abuse). Additionally, a single item question evaluated the degree of everyday difficulty experienced from any reported symptoms. Reliability in the present sample was excellent, with Cronbach's α 0.93 ( Spitzer et al., 1999).

Beck anxiety inventory-second edition

The BAI-II is a 21-item self-rated standardised measure that captures the physical symptoms associated with anxiety that cannot be explained by biological reasons (e.g., hypoglycaemia; peripheral neuropathy, or other non-anxiety factors). Item scores, rated on a scale from 0 ("not at all") to 3 ("severely"), provide a Total anxiety score (0-63) and clinical cut-offs indicating the severity of anxiety symptoms, yielding 0.92 reliability, and 0.75 test-retest reliability ( Beck and Steer, 1993). The BAI-II was administered at T1 and T2. In the present sample, reliability was good, with Cronbach's α 0.88 ( Beck and Steer, 1993).

Beck depression inventory-second edition

The BDI-II is a 21-item self-rated standardised measure, based on DSM-IV-TR ( American Psychiatric Association, 1994) diagnostic criteria, that is widely used to screen for depression and related physical and psychological symptoms, e.g., suicidal ideation, rumination, sleep disturbances, weight loss, and change in appetite in adolescents and adults. Item scores, rated on a scale from 0 ("not at all") to 3 ("severely") provide a Total depression score (0-63), and clinical cut-offs indicating the severity of depression symptoms, yielding 0.86 reliability and 0.90 test-retest reliability ( Beck et al., 1996). The BDI-II was administered at T1 and T2. In the present sample reliability was excellent, with Cronbach's α 0.94 ( Beck et al., 1996).

Quality of life and subjective well-being

At the time this study began, very few investigations had evaluated QoL in autism and even fewer had explored QoL in older autistic adults (e.g., Geurts and Vissers, 2012). Accordingly, two QoL measures were used (see below); these are designed to capture similar domains but use different methods of calculating outcome scores. Thus, a conversion formula (see International Well-being Group, 2013) was applied to the World Health Organisation Quality of Life-Short Form (WHOQOL-BREF) scores for Overall-QoL, Health-QoL, and degree of Support received, for comparable reporting in relation to the PWI-A scores. Both the WHOQOL-BREF and the PWI-A were administered at T1 and T2 to evaluate any (positive or negative) change in quality of life and well-being.

World health organisation quality of life-short form

The WHOQOL-BREF assesses the effects of physical and cognitive difficulties on everyday living and QoL. Items are self-rated on a Likert-type scale from 1 ("worst") to 5 ("best"). The measure provides a Total score and four domains outcome scores (all 0-100; mean 50), namely: Physical-QoL (e.g., activities of daily living, sleep, pain, and illness), Psychological-QoL (e.g., negative/positive feelings and memory/concentration), Social-QoL (e.g., relationships and social support), and Environmental-QoL (e.g., financial status, living arrangements, and access to and quality of social care). Three additional questions provide measures of Overall-QoL, Health-QoL, and degree of Support received from others. One of the benefits of the WHOQOL-BREF is that it asks about the individual's satisfaction with life-domains rather than being based on normative assumptions about what constitutes a "good" quality of life (e.g., having a range of friends). In the present sample, reliability was good, with Cronbach's α 0.85 ( Skevington et al., 2004).

Personal well-being index, adult

The PWI is a self-rated standardised measure of quality of life that focuses on subjective well-being (SWB) and global life satisfaction (GLS). It has good index reliability (Cronbach alpha 0.70-0.85; International Well-being Group, 2013), and 0.84 test-retest reliability ( Cummins and Law, 2005; Lau and Cummins, 2005). Seven core items evaluate "health," "standard of living," "relationships," "safety," "achievement," "future prospects," and "community," with scores averaged to provide a measure of SWB. Two optional questions evaluate GLS (item-1: "Thinking about your own life and personal circumstances, how satisfied are you with your life as a whole?") and Religion (item-8: "How satisfied are you with your spirituality or religion?"). Each item is rated from 0 to 10 (0 = "no satisfaction at all," 10 = "completely satisfied"). Because almost half the participants (42%, n = 29) did not answer the optional item about religion, data for this item were excluded from the overall analysis. In the present sample, reliability was good, with Cronbach's α 0.88 ( International Well-being Group, 2013).

Statistical analysis

T1 and T2 cross-sectional comparisons were carried out with t-tests between younger and older groups. Statistical significance (alpha, p < 0.05) and effect sizes ( d) are reported for between-group contrasts. A secondary analysis was carried out using Bonferroni corrections for multiple comparisons ( p < 0.001). At the time of this study, there was no precedence for evaluating analysis of change in autistic adults. The general ageing literature was consulted to inform the analytic approaches to the data reported here. In our study, analysis of change ( Table 3) was calculated using individual change scores for each participant, followed by a SD method of variance between T1 and T2 scores for each participant to establish a reliable change index (RCI; see Jacobson and Truax, 1991; Frerichs and Tuokko, 2005), using the formula: X2-X1/SD, where X2 represents the individual score at T2 (averaged for each Age Group) and X1 represents the individual score at T1 (averaged for each Age Group), and SD is the T1 standard deviation of the mean for each Age Group. The RCI scores +1 indicate change; scores >+1SD indicate improved change, whereas scores <−1 SD indicate deterioration ( Frerichs and Tuokko, 2005, p. 324). A detailed description of the method is provided in Supplementary material ( Appendix 4). Additionally, to check the above calculation outcomes, paired t-tests were run to confirm any group differences between T1 and T2 scores (see Table 3).

At T1 and T2, multivariate linear regression analyses were carried out to determine Overall-QoL and Health-QoL as outcome variables, using a stepwise regression method for autistic traits and mental and physical health conditions as independent variables. Stepwise backward regression analysis was used to assess which factors were predictors of Health and Overall QoL outcomes. This method was used since the data were exploratory and no prior theoretical basis for selecting particular variables as predictors over other variables. Furthermore, the stepwise backward method controls for suppression effects in analysing the relative contribution of each variable to the regression model. The following variables were significant predictors and were subsequently included in a second regression using the Enter method: age, processing speed, self-report autistic traits, self-report RRBs, anxiety, depression, Somatic complaints, and difficulties in daily living. At the time this study was conducted, this statistical approach was a recommended method (e.g., Howell, 2002) for the exploratory investigation in this study. Alternative approaches have subsequently been suggested (e.g., Smith, 2018), but these statistical guidelines were not available at the time the present study was conducted.

Missing data analysis

In the typical ageing literature, longitudinal studies of this nature report participant attrition between 10 and 32% depending on the age and gender of participants ( Young et al., 2006), the duration of the study and intervals between follow-up assessments ( Saiepour et al., 2019). In the present study, every effort was made to collect completed data sets for all participants. However, where background information or test data were not available (e.g., ADOS), these are reported as missing data [Little's MCAR test: χ ² (632) = 555.06, p = 0.99; see Appendix 2 in Supplementary material].

Study 1: T1 cross-sectional

Results of T1 study

Sample characteristics

Table 1 describes the sample characteristics at T1. Given the study design, younger ( n = 37) and older ( n = 31) groups differed significantly on chronological age. Groups did not differ on years of formal education, despite five older adults holding fewer. There were also no group differences in gender [ χ ²(1) = 0.005, p = 0.94], or any IQ scale scores (see Table 1).

Table 4 summarises autistic profile scores for younger and older adults. There were no age group differences in ADOS-2 or SRS-2 scores ( Table 4). As previously mentioned, all participants had existing clinical diagnoses of an autism spectrum condition. Although 12 participants (younger, n = 7; older, n = 5) did not meet the cut-off for ADOS-2 Total scores for 'Autism Spectrum' (≥7), they did meet or exceeded the cut-off for both index scores (Communication ≥2; Social Interaction ≥4). These findings are consistent with variable sensitivity and specificity of the ADOS for adults who also have co-occurring mental health conditions ( Maddox et al., 2017).

Physical and mental health

Figure 2 summarises the PIAS self-reported data related to everyday difficulties with social skills, mental and physical health indicated high rate of co-occurring conditions in younger and older adults. Overall, participants reported high rates of symptoms related to anxiety ( n = 50 [74%]) and depression ( n = 47 [69%]), and related difficulties in identifying and describing emotions (alexithymia, n = 28 [41%]; for further information see Appendix 3 in Supplementary material; Figure 1). Sleep disturbances (e.g., difficulty falling asleep; frequent waking) were common in more than half to two-thirds of adults ( n = 48 [71%]) as were sensory hypersensitivities ( n = 58 [85%]). Conditions related to sensory sensitivities (e.g., visual, auditory, touch, taste/texture, and olfactory, n = 27 [40%]) were reported more by younger than older adults, whilst only five adults (younger, n = 1; older, n = 4) reported hyposensitivity or sensory-seeking. Social difficulties and stresses were related to social conversation ( n = 26 [39%]), social anxiety ( n = 28 [42%]), and loneliness or social isolation ( n = 26 [39%]). Additionally, somatic conditions that presented greatest difficulties were related to neurophysiological symptoms (heart racing, n = 10 [14%]; shortness of breath, n = 14 [21%]); digestive problems (bowel, n = 14 [21%]; indigestion, n = 28 [41%]); and pain (stomach, n = 19 [28%]; back, n = 10 [14%]; and joints or limbs, n  = 28 [41%]).

Figure 2. (A) Self-reported mental health conditions. Error bars indicate 1 SE. (B) Self-reported sensory and sleep conditions. Error bars indicate 1 SE. (C) Self-reported social difficulties. Error bars indicate 1 SE.

Figure 3 summarises the percentage of adults who met the threshold for at least one co-occurring condition (measured by PHQ) and experienced everyday difficulties related to those conditions. Overall, at T1 59% of the younger ( n = 22) and 30% of older adults ( n = 9) met the criteria for at least one other condition. The number of co-occurring mental health conditions ranged from 0 to 4, with almost half (46%) of all autistic adults having multiple co-occurring conditions. Although there were no significant differences between younger and older adults on any mental health measures ( Table 5), 37% of younger ( n = 14) and 22% of older adults ( n = 7) met the criteria for three or more co-occurring mental health conditions. Both groups reported being on multiple pharmacological treatments for those conditions, which aligns with the self-report background data collected (using the PIAS; see Appendix 3 in Supplementary material).

The most common conditions reported by younger adults were Anxiety (27%; of which 16.2% other Anxiety syndromes; 10.8% Panic syndrome), Major Depressive syndrome (21.6%), Eating disorders (21.6%; of which 18.9% Binge Eating; 2.7% Bulimia Nervosa), Somatic disorders (16.2%, e.g., bodily pain), and Alcohol abuse (8.1%). For older adults, the most common conditions were Depression (15.6%; of which 12.5% Major Depressive syndrome; 3.1% other Depression syndrome), Binge Eating disorder (12.5%), Anxiety (9.4%; of which 6.3% other Anxiety syndromes; 3.1% Panic syndrome); Alcohol abuse (6.3%), and Somatic disorders (3.1%). Moreover, both groups reported difficulties in everyday functioning (e.g., doing housework, employment, and social relationships), as "somewhat" to "very difficult," related to these conditions.

Table 5 summarises the statistical analyses for T1 comparisons between younger and older adults, on the standardised assessments of mental health and quality of life. Although the standardised measures captured a lower rate of mental health concerns than those self-reported in background descriptive information (using the PIAS), these were nevertheless still predominant for the majority of adults, indicating at least "moderate anxiety" symptoms (as measured by BAI-II), and "mild mood disorder" to "borderline clinical depression" symptoms (as measured by BDI-II), which were also observed on the PHQ (reported in Table 5).

Quality of life and subjective well-being

As set out in Table 5, scores across SWB and QoL domains were, overall, poor for both younger and older adults, indicated by below-average scores (<50; scale 0-100) on the PWI and WHOQOL-BREF scales, respectively (see Roestorf and Bowler, 2016; Roestorf, 2018 for reports of significant lower QoL for autistic adults compared to non-autistic groups). Moreover, both groups reported low degree of Support received for their everyday needs. The most common indicators of low SWB were related to lack of Personal Relationships and feeling isolated from the Community; lack of Achievement; and concerns about Health and Future. Scores for these factors were also below normative population mean scores of 70-80 points (see Cummins et al., 2003; International Well-being Group, 2013). Standard of Living and feeling safe (Safety) were amongst the highest SWB indicators.

Predictors of quality of life at T1

Table 6 sets out the main predictors of QoL domains across all participants. Age was not consistently related to QoL [all r(44) < 0.17, all p > 0.25] as low QoL scores, across domains, were observed across the lifespan. The only exceptions to this were Overall QoL and Social QoL domains, for which older adults reported greater satisfaction. Overall, depression and anxiety symptoms (as measured by BDI-II and PHQ, and the BAI-II, respectively) were the strongest consistent predictors of Global Life Satisfaction and Subjective Well-being, and most QoL domains including Overall-QoL, Health-QoL, Physical-QoL, Psychological-QoL, and Environmental-QoL. However, these symptoms did not predict Social-QoL scores [ = 0.07; F(2,46) = 1.83, p  > 0.05].

Difficulties related to autistic traits (as measured by SRS-2 Total scores), predicted Subjective Well-Being, and to a much lesser extent Overall QoL, Global Life Satisfaction, Psychological-QoL, and Environmental-QoL.

By contrast, factors related to age, gender, and autistic traits (as measured by ADOS-2 and SRS-2 Communication and RRB scores) did not predict any QoL or SWB outcomes [all F(8,30) < 1.60, all p  > 0.05].

Discussion of T1 results

At T1, there were no age group differences in autistic traits ( Table 4) or mental health ( Table 5). Although older adults reported slightly better Social-QoL and Overall-QoL, in general QoL was low in both groups. Poor QoL was strongly linked to depression symptoms, anxiety, and autistic features, and was associated with difficulties in everyday functioning (e.g., autonomy, self-care, doing housework, holding employment, and maintaining social relationships; and cf. Park et al., 2019). The high rates of co-occurring physical and mental health conditions identified in the present study concur with many recent reports of everyday difficulties and poorer QoL in younger and older autistic adults (e.g., Khanna et al., 2014; Bishop-Fitzpatrick et al., 2016; Mason et al., 2018; Lawson et al., 2020). The findings replicate observations of recent studies that outline comparisons between older autistic and non-autistic adults (see Yarar Zivrali et al. (in press); and see Van Heijst and Geurts, 2015; Ayres et al., 2017 for reviews).

Study 2: T2 longitudinal follow-up

Results of T2 study

Sample characteristics

Table 2 summarises the characteristics T2 participants (25 younger and 24 older adults). The mean interval between T1 and T2 assessments was 2.4 years (range 1.2-3.8 years) and was not significantly different between age groups [ t(25) < 1.00, p > 0.05]. Comparisons of the profiles of participants who continued to the T2 follow-up with those who did not, revealed significantly greater T1 depression symptoms in the non-continuing group [ t(36) = 2.33, p = 0.03, d  = 0.78], but no other differences in T1-derived cognitive or health profiles.

Autistic traits profiles (as measured by the SRS-2; Constantino and Gruber, 2012) were re-assessed in younger and older participants. As at T1, there were no age-related group differences at T2.

Mental health

As indicated in Table 2, there were no significant Age Group differences in anxiety or depression symptoms (measured by the BAI-II and BDI-II, respectively). Nor were there any differences in PHQ-measured symptoms of somatic complaints (e.g., bodily pain), or eating disorders, or alcohol abuse. Once again, daily difficulties related to co-occurring conditions were rated by both groups as "somewhat" to "very difficult."

Quality of life and subjective well-being

Table 2 summarises the T2 QoL scores. As at T1, QoL at T2 was low across domains. The T2 data followed a similar pattern to T1 observations, with older adults once again reporting greater satisfaction in Subjective Well-being, Overall-QoL, and Social-QoL. However, in contrast to T1 data, older adults also reported greater Psychological-QoL than younger adults.

Analysis of change over time

Table 3 indicates the change in T1-T2 scores that were assessed by comparing individual scores for autistic traits, mental health (anxiety, depression), and QoL, following the procedure set out earlier (see section "Statistical analysis"). There were no significant differences between T1 and T2 scores on any mental health or QoL domain scores [all t(26) < 1.96, all p > 0.05]. Regarding autistic traits, only RRBs showed significant change presented as increased at T2 [ t(26) = 2.22, p < 0.04]. However, the analysis was not significant after applying Bonferroni corrections ( p < 0.001) for multiple analysis ( p = 0.16, η p ²  = 0.13).

Predictors of quality of life at T2

Table 7 summarises the main predictors of T2 QoL for all autistic adults. Once again, Age did not predict any QoL outcomes, across domains [all r(29) ≤ 0.17, all p ≥ 0.18], which followed the pattern observed at T1. However, Age at T2 was significantly correlated with Subjective well-being [ r(29) = 0.40, p = 0.015] and Global Life Satisfaction [all r(29) = 0.34, p = 0.036], which was explained by higher satisfaction in these domains reported by older autistic adults (see Table 2).

Autistic traits were significantly negatively correlated with all QoL domains, except for Health-QoL, (all r(29) ≥ 0.32, all p < 0.05). Given the marginal increase in autistic traits observed at T2, these were also explored in relation to QoL outcomes. RRBs, but not social communication or total scores (measured by SRS-2), were a significant predictor of Subjective Well-being ( = 0.14, F(1,27) = 4.43, p < 0.05), Physical-QoL ( = 0.2, F(1,27) = 4.35, p = 0.05), and Environmental-QoL ( = 0.14, F(1,28) = 4.62, p  < 0.05).

Difficulties related to anxiety, depression, and eating disorders were consistent predictors of Health-QoL [ = 0.60, F(3,22) = 11.16, p < 0.001], Physical-QoL [ = 0.65, F(3,22) = 13.34, p < 0.001; Table 7]. Whilst depression alone predicted Overall-QoL [ = 0.51, F(2,23) = 12.16, p < 0.001], and anxiety and difficulty in everyday living predicted Psychological-QoL [ = 0.50, F(2,23) = 11.42, p < 0.001]. Social-QoL, however was predicted by multiple factors including anxiety, depression, and autistic traits difficulties related to social communication, and difficulty with everyday living [ = 0.71, F(6,19) = 7.80, p = 0.005]. The significant predictors of respective QoL outcomes are presented in Table 7.

Discussion of T2 results

There were no overall changes in autistic traits over time (as measured by SRS-2). In relation to quality of life outcomes, although older autistic adults reported significantly elevated satisfaction, compared to younger adults, in domains of Subjective Well-being, Overall-QoL, Psychological-QoL, and Social-QoL, statistical comparisons between T1 and T2 outcomes showed no general improvement in QoL, over time. Similarly, there were no changes in mental health, again reflecting continuing difficulties in this group, and poor QoL across domains ( cf. also Mason et al., 2018; Lai et al., 2019). Furthermore, co-occurring depression symptoms at T2 were a consistent significant predictor of all QoL outcomes. Overall, these findings mirror the pattern of associations observed at T1 ( Table 6).

General discussion

In the present study, we set out to describe the patterns of autism traits and well-being in the context of ageing, by exploring age-related differences between younger and older autistic adults. We also explored changes that occurred over a short follow-up (approximately 2 years) period. This paper describes our findings related to general ability, autistic traits, mental and physical health, and several quality of life domains. The present findings concur with emerging literature that highlights how increased difficulties related to autistic traits and mental health (e.g., anxiety, depression; Lawson et al., 2020; Oakley et al., 2021; Mason et al., 2022) are strong predictors of poor quality of life in autistic adults. The results highlight specific areas of concern for autistic adults, as well as domains that may contribute toward a more positive QoL in older age.

Overall, existing data from cross-sectional and longitudinal studies suggest that the core features of autism remain relatively stable over time (e.g., Magiati et al., 2014; Gotham et al., 2015; Lever and Geurts, 2016; Steinhausen et al., 2016), including up to middle age ( Howlin et al., 2013). However, low well-being and poor QoL outcomes are frequently reported for autistic people, particularly in adulthood (e.g., Ayres et al., 2017; Mason et al., 2018; Lai et al., 2019; Lawson et al., 2020). Poor mental health is also known to have adverse effects on cognitive abilities, social isolation, and QoL (e.g., McClintock et al., 2010; and see Lai et al., 2019; Mason et al., 2019), whereas increased facilitation of social integration is linked to higher QoL and fewer anxiety and depression symptoms ( Lever and Geurts, 2016; McConachie et al., 2018; Mason et al., 2018) but this is not well understood in older autistic adults ( Mason et al., 2019). Therefore, accounting for individual differences is an important consideration for future autism ageing studies.

The pattern of findings in the present study broadly reflects the findings in previous studies. In our study, no age-related changes were observed for most outcome measures. Regarding autistic traits, social communication difficulties remained generally stable, although there was some increase in restricted interests and repetitive behaviours (RRBs) from T1 to T2.

Restricted Interests and Repetitive Behaviours were also a significant predictor of QoL outcomes related to Subjective Well-being, Global Life Satisfaction, and Environmental-QoL. The underlying causes of these associations are unknown but it may be that continuing difficulties associated with RRBs could adversely impact environmental autonomy, related to the home environment, access to and quality of health and social care, and participation in community activities or opportunities for leisure and recreation (e.g., Oakley et al., 2021; and see Park et al., 2019).

Similarly, age-neutral outcomes were observed across mental health and QoL domains, over time. Thus, whilst there were no further significant declines, overall, in these domains, nor were there any improvements. At T1, around two-thirds of participants reported co-occurring physical and mental health conditions which were associated with poorer QoL. Anxiety and depression were experienced by more than two-thirds of the autistic adults in the study and difficulties related to both of these conditions were significant predictors of poor QoL at T1 and T2. Mental health difficulties were also strongly associated with everyday difficulties (e.g., housework, employment, social relationships; and cf. Gotham et al., 2015; Mason et al., 2018; Park et al., 2019). Accordingly, the findings at both time points suggest that anxiety and depression have a widespread impact on many aspects of everyday life, including participation in social activities (see Park et al., 2019 for similar findings in and adolescent-young adult sample). In the present study, reliability across the mental health and quality of life measures used was good (>0.85) to excellent (0.94). These findings concur with previous reports of sustained difficulties related to mental health and QoL (see Roestorf and Bowler, 2016; Roestorf, 2018; Yarar Zivrali et al., in press, for cross-sectional comparisons with non-autistic groups; and see, e.g., Gotham et al., 2015; Van Heijst and Geurts, 2015; Lever and Geurts, 2016; McConachie et al., 2018).

Given that these difficulties still remained significant at T2, the findings raise important issues about the mental health and well-being needs of autistic adults in the context of ageing. However, the direction of any association is unknown and the underlying causes and exacerbating factors related to these difficulties need to be systematically explored in future research (see Lord et al., 2021 for current review and future-focused recommendations).

Study limitations and future directions

The main limitation of the present study relates to the generalisability of the findings to the wider autistic community. In common with most other research that directly includes autistic people (i.e., not via proxy reports), the data are based on relatively small volunteer groups of participants with average to above-average cognitive skills. The ADOS is not designed to account for age-related differences or trajectories over time and revised ADOS CSS algorithm ( Hus and Lord, 2014) were not available at the time. There is emerging literature to suggest the revised algorithm can provide a more robust evaluation of differences in symptom profiles and behavioural outcomes. However, there is still little evidence to support its use and sensitivity in the context of ageing and autism ( Morrier et al., 2017). Moreover, we do not know if the same associations would be found in participants with more severe autistic or psychiatric conditions, or by those less able to share their own experiences and difficulties, or engage social participation without individual supports (e.g., Charlton et al., 2022). Similarly, whether the pattern of results reported here would be mirrored in a more intellectually disabled sample, particularly in low-middle income countries where resources for post-diagnostic support and health care are more scarce is an open question (e.g., McCauley et al., 2020; Frankish and Horton, 2021).

The findings are also limited by a lack of detailed information on variables such as socioeconomic status. Whilst we did record years of education, measures of income, employment status, and residence were not systematically collected, and this further compromises the generalisability of these findings to autistic adults living in different circumstances. The inclusion of non-standardised measure of physical health status was primarily due to the lack of an autism-specific measure in this area, but again is a methodological concern that should be considered when interpreting these findings. Although the measures selected to assess mental health and well-being were based on the best available at the time, that had also been used in previous autism research, more autism-specific measures have since been developed, such as for assessing anxiety (e.g., Rodgers et al., 2020) and Quality of Life (e.g., ASQOL; McConachie et al., 2018 but see Williams and Gotham, 2021 for caution on interpreting the ASQoL composite score). The present study did not report the internal consistency of the standardised general population measures that were used with an autistic community sample. Therefore, caution should be exercised in interpreting the present study findings, subject to future replication. However, we note that more recent literature has validated the use of measures, such as the BDI-II ( Williams et al., 2021) and PHQ ( Arnold et al., 2020) with good construct validity and reliability, respectively, in autistic adult samples.

In the present study, only around two-thirds of participants at T1 went on to complete the T2 follow-up. This was primarily because of participant ill-health or death, life commitments, or withdrawal from the larger research programme. It is possible that the demands of ongoing research participation may have been too challenging for some adults with greater cognitive, functional or mental health difficulties, or that poorer health, or lower Socio-Economic Status may have affected the ability or means to take part in the follow-up study (e.g., Howlin et al., 2014; Van Heijst and Geurts, 2015).

A third limitation centres on gender. Like the majority of other autism studies, most of our participants were male. Although some recent studies on gender differences suggest that masking of autism-related symptoms by autistic females may underpin more pronounced mental health difficulties (e.g., Mandy, 2019). Fombonne (2020) highlights the poor methodological quality of much research in this area (and see Williams et al., 2021). Therefore, better representation of autistic women in the context of ageing research is needed.

A fourth limitation is the statistical analyses used in the present study. Given the present study is one of the few longitudinal studies of autistic adults, there was little precedent for the exploratory investigation of change in this study. Furthermore, there is still little consensus in the general ageing literature on the "right" reliability of change analysis, since change scores are influenced by the type of assessment, cognitive and mental "health" of participants at baseline compared to follow up, and the duration the of interval between test and retest, and the heterogeneity of the participant group ( Ivnik et al., 2000; Maassen, 2001; Frerichs and Tuokko, 2005). To evaluate the predictors of quality of life, stepwise regression was used based on a review of the literature available at the time of this study. Whilst alternative approaches have subsequently been suggested (e.g., Smith, 2018), these guidelines were not available at the time the present study was completed. Moreover, while the present study did not demonstrate significant age effects over time, the validation of "age-neutral" outcomes is required from replication studies. The findings should therefore be interpreted with caution and subject to replication in future studies using alternative statistical analyses.

A final limitation is the short time between the T1 and T2 assessments, which may have reduced the chances of detecting significant patterns of change. This coupled with the problems of attrition noted above, points to the need for greater attention to be paid to reducing attrition rates especially in the context of longer follow-up studies.

Strengths and contributions of the present study

The present findings provide new and important insights into health and well-being outcomes for autistic adults as they grow older. The majority of existing autism research relies on cross-sectional studies between autistic and non-autistic comparison groups ( Raz et al., 2005). However, it is only in longitudinal evaluations that true changes over time can be observed ( Salthouse, 2004).

In the present study, both cross-sectional and longitudinal methods were used to assess age related changes across a wide range of standardised and self-report measures of autistic traits, health and well-being. This comprehensive approach enabled us to identify and evaluate the factors that are associated with ageing and autism to a better understanding of well-being outcomes for autistic adults as they grow older.

Conclusion

To our knowledge, the present study is among the first to combine cross-sectional and longitudinal methodologies, across a breadth of measures, to assess mental health and quality of life in a community-based sample of younger and older autistic adults. The findings highlight the adverse effects of co-occurring physical and mental health conditions on everyday living and quality of life over time. Thus, the present research contributes to furthering our understanding of the specific challenges that may be associated with ageing and autism. However, more work is needed on larger, more representative cohorts, with sustained longitudinal follow-ups at multiple time points. Only through continued efforts can we understand the potential factors that may help or hinder transitions across the lifespan (Roestorf and Lambrechts, pre-print; https://osf.io/ygkw5/) and support autistic individuals to lead longer, healthier, and happier lives.

Data availability statement

The datasets presented in this article are not readily available because the raw data supporting the conclusions of this article are governed by General Data Protection Regulations (2008) in the EU and UK. Accordingly, no data, whether anonymised or identifiable, may be made shared without the express written consent of participants involved in this research. Requests to access the datasets should be directed to amanda.roestorf.2@city.ac.uk.

Ethics statement

The studies involving human participants were reviewed and approved by City, University of London Psychology Department Research Ethics Committee PSYETH(UPTD) 13/14 28. The patients/participants provided their written informed consent to participate in this study.

Author contributions

DB and PH were involved in obtaining research funding and providing supervision to AR during the programme of work, and reviewed and advised on the research protocol, analysis, and results and contributed to editing the manuscript. AR designed all studies and conducted all data collection, diagnostic assessment, and analysis and writing of the manuscript. All authors contributed to the article and approved the submitted version.

Funding

This research was supported by funding from the Medical Research Council UK in collaboration with the National Autistic Society for a 4-year CASE Industry Studentship (grant no. MR/K016911/10).

Acknowledgments

The authors wish to thank Carol Povey and the National Autistic Society for their collaboration and co-funded support of this work. Special thanks to Sebastian Gaigg for supporting reliability coding for the ADOS administration and mental health aspects of this work, and our sincere thanks to the participants who took part in each stage of this research.

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.

Supplementary material

The Supplementary materials for this article can be found online at: https://www.frontiersin.org/articles/10.3389/fpsyg.2022.741213/full#supplementary-material

Footnotes

References

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A masterclass is vulnerability

"If the first two episodes are anything to go by the rest of this podcast series is going to be incredible listening. I related to so much of what was shared in the first episode, way more than antici..."

By Therealksp on Jan. 18, 2023 via Apple Podcasts

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A masterclass is vulnerability "If the first two episodes are anything to go by the rest of this podcast series is going to be incredible listening. I related to so much of what was shared in the first episode, way more than antici..." By Therealksp on Jan.

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NHS England: Autistic people’s healthcare information strategy for England 

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NHS England: Autistic people’s healthcare information strategy for England 

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NHS England » Autistic people’s healthcare information strategy for England

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This document sets out an initial strategy for the development of information about the health of, and healthcare received by autistic people in England, from sources already collected or in the process of being established. Government has announced, in the National strategy for autistic children, y…

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Hide it, hack it, or hawk it.      Liz Bell 

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Hide it, hack it, or hawk it.      Liz Bell 

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The night I lost my freedom and got it back again.      Rose Matthews (pre print of journal article published in Autism in Adulthood)

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Autism and Operational Policing (Nick Chown, Dennis Debbaudt, Luke Beardon, Kleio Cossburn, Jack Scott)

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Autism and Operational Policing (Nick Chown, Dennis Debbaudt, Luke Beardon, Kleio Cossburn, Jack Scott)

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Autism, Adverse Events and Trauma - Lobregt-van Buuren E, Hoekert M, Sizoo B.

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Autism, Adverse Events and Trauma - Lobregt-van Buuren E, Hoekert M, Sizoo B.

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Chapter 3 in: Grabrucker AM, editor. Autism Spectrum Disorders [Internet]. Brisbane (AU): Exon Publications; 2021 Aug 20. doi: 10.36255/exonpublications.autismspectrumdisorders.2021.trauma

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Abstract

Clinical and scientific data show a higher risk of adverse events and trauma in people with an autism spectrum disorder (ASD). These experiences are, however, often undiagnosed and untreated in autism. Diagnosing trauma- and autism-related symptoms is complicated due to the overlap between these two. Several pitfalls and points of attention can be mentioned. This chapter highlights the importance of recognizing trauma-related symptoms at an early phase and start of trauma treatment. It also provides an overview of the current knowledge about the feasibility and effectiveness of treatment of trauma-related symptoms in people with ASD. Simultaneous training of self- and emotion regulation skills, taking into account autistic features, is recommended.

Keywords:

early recognition, emotion regulation, masking, post-traumatic stress disorder, trauma, underdiagnosis

INTRODUCTION

Adverse events, trauma and their consequences are frequently overlooked in people with autism spectrum disorders (ASD). At the same time, people with ASD are at increased risk of repeatedly experiencing such events ( 1), leading to underdiagnosis and undertreatment of trauma-related symptoms. Conversely, emergent co-morbid problems may mask autism-related symptoms. This chapter provides information about prevalence of exposure to adverse events, trauma, and post-traumatic stress disorder (PTSD), and discusses possible explanations for overlooking of adverse events and trauma in people with ASD. Throughout this chapter, the term 'trauma' will refer to the DSM-5 definition of trauma and requires "actual or threatened death, serious injury, or sexual violence" ( 2). The description of adverse events refers to experiences that can result in PTSD symptoms but does not meet the criteria for PTSD.

There is a growing body of research that pertains to the prevalence of exposure to adverse events and trauma in children with ASD, and the consequences in terms of physical and mental health ( 3, 4). For example, in a population-based study, it was found that children with ASD reported a significantly higher level of exposure to neighborhood violence, parental divorce, traumatic loss, poverty, mental illness and substance abuse in the family. These situational indicators of stress and trauma experienced by the family are called adverse childhood experiences (ACE) and the probability of reporting one or more of them was higher in children with ASD compared to children without ASD ( 3).

This difference is especially pronounced in lower income families ( 5). Also, adults with ASD are exposed to a significantly greater number of adverse events in comparison with individuals without ASD. This has been described as a vulnerability to negative life experiences, which is suggested to be an important factor in the development of co-morbid mental health conditions such as anxiety and depression symptoms ( 6). Common adverse events with a major impact are loss of study and work, and bullying ( 6, 7). In clinical practice, we see a chronic mismatch between the needs and possibilities of the person with autism, as well as difficulties facing up to the expectations of family and treatment providers. Individuals in whom autism is diagnosed at a later age are most at risk of these chronic mismatch ( 8).

Exposure to adverse events and trauma does not automatically result in PTSD and has been found to be associated with many other forms of psychopathology, with the strongest link to anxiety and depression ( 6, 9). Anxiety and mood symptoms were found in 50-70% of children and adults with ASD ( 10, 11, 12). One study showed that nearly 90% of youth with ASD and clinical-level mood symptoms reported at least one trauma, compared to 40% of those without mood symptoms ( 13). Adverse events partially explain the higher rates of anxiety and depression symptoms and lower life satisfaction in adults with ASD compared to non-autistic adults ( 6). Thus, in individuals with ASD there seems to be a strong association between exposure to adverse events and trauma and the presence of anxiety and depressive symptoms.

A proportion of people who experience trauma develops symptoms appropriate to post-traumatic stress disorder (PTSD). In children and adolescents with autism, PTSD appears to occur at a similar or higher rate compared to the general population ( 7). Adults with ASD are more than four times likely to be diagnosed with PTSD than adults without ASD ( 6). Thus, there are indications of a higher prevalence of exposure to traumatic events and post-traumatic stress disorder (PTSD) in children and adults with ASD. Children and adults with ASD and intellectual disabilities are especially at risk for exposure to adverse events and trauma ( 14).

Above-mentioned issues regarding trauma and ASD are illustrated using a case study that follows below.

CASE STUDY

Beline is a 25-year-old woman with autism. She has been seeing social workers since the age of 13 and has followed various (clinical) treatments aimed at mood and anxiety symptoms and eating problems. She was diagnosed with ASD only recently. She lives with her parents and brother and has had no further education or work after graduating from high school. She always felt excluded by other pupils at school. At the time of her admission to a specialized outpatient autism clinic when she was 25 years old, mood and anxiety symptoms were prominent. She also had a negative and empty self-image. In daily life, she experiences problems around daily activities, social contacts, and home situations.

AUTISM SPECTRUM DISORDER AND TRAUMA

Traditionally, autism has been associated with three cognitive styles: a limited theory of mind, weak central coherence, and executive functioning disorders. Recently, however, the enactive approach for autism, coined by Klin in 2003 ( 15), has shown to be helpful in understanding where difficulties originate from. The enactive approach has its origins in phenomenology and encourages one to view the world as the individual with autism experiences it ( 16). This requires exploring how someone makes sense of what goes on around him and how that subsequently directs his activities. Sense-making depends to a certain extent on innate qualities like sensory processing ( 17). For example, when the neurological threshold is low, sounds may be experienced as painful by individuals with autism, which influences the sense-making process. The way people with autism understand the world can therefore differ from the shared opinion, which may provoke negative feedback, conflict, or ridicule. This, in turn, will influence the way the person with autism regulates his activities in the environment, which will manifest in behavior. In other words, behavior as we see it originates from the phenomenological experience of the world, which may differ from that of persons without autism. This explains why events that would generally not be considered as traumatic may impact as such in people with autism.

Experiencing adverse events and trauma more frequently, combined with a genetic vulnerability when it comes to self-regulation and sense-making, make people with autism more susceptible to the psychosocial consequences of experiencing adverse events ( 18). Wood and Gadow ( 19) hypothesized that autism-related sensory hyperreactivity to everyday stimuli, social confusion, misunderstanding, and rejection by others might lead to baseline elevated anxiety levels, affecting resilience to cope with stressors. A possible consequence is a severe overload in (young) adults with autism and their family and friends. This can lead to a range of additional problems in the areas of attachment, identity, anxiety, and mood symptoms and subsequently a maladaptive way of regulating themselves through, for example, compulsive behavior, restrictive eating, socially isolating themselves and/or substance use.

UNDERDIAGNOSIS AND UNDERTREATMENT

As mentioned before, certain stressful events, such as bullying, do not meet the definition of trauma as described in the DSM-5. Patients reporting these experiences are not formally diagnosed with PTSD, and mostly trauma treatment is not provided. In addition, because of a different sense-making, negative events, which people without autism merely see as unpleasant, can be experienced as upsetting or even traumatic by people with autism. Conversely, disturbing or traumatic events experienced by people without autism may not be experienced as traumatic in people with autism ( 13). Also, people with autism do not always recognize when situations are unsafe, and they are less inclined to share their experiences spontaneously with others ( 20). These factors increase the risk of underdiagnosis and under-treatment of traumatic symptoms in people with ASD. This is compounded by a phenomenon called diagnostic overshadowing: symptoms attributed to autism may be stress reactions to traumatic or other adverse events. For example, hyperarousal (a symptom of PTSD) overlaps with autism-related sensory hyperreactivity. Feelings of detachment from others (a symptom of PTSD) partly overlap with deficits in social-emotional reciprocity associated with autism. An impaired ability to mentalize and recognize emotions is observed in both people with PTSD and in people with autism. In conclusion, trauma, adverse events, stressful events and trauma-related symptoms may be overlooked or overshadowed by autistic features or other psychopathology and therefore remain untreated. Conversely, autistic features may also long be overlooked or overshadowed by co-morbid problems such as trauma-related symptoms.

If the impact of traumatic events is recognized, however, there is still a risk of undertreatment due to insufficient availability of therapists who understand trauma and autism. If the impact of traumatic events is only recognized at an adult age, there are often serious additional problems in (young) adults. Because of this, trauma treatment becomes more difficult or is not seen as feasible, which leads to a vicious circle.

TREATMENT METHODS

Little is known about the feasibility and potential effectiveness of treatment of trauma in individuals with ASD and trauma-related symptoms. This may partly be caused by the problem of overlooking and overshadowing as mentioned above. Another impeding factor may be that people with ASD are often excluded from participating in research ( 21). This section gives an overview of what is known about treatment of trauma in autistic children and adults with and without intellectual disabilities.

Eye Movement Desensitization and Reprocessing (EMDR) therapy, Cognitive Behavioral Therapy (CBT) with a trauma focus, and Prolonged Exposure are strongly recommended for the treatment of adults with PTSD. Secondly, standard recommendations for the treatment of adults with PTSD are CBT without a trauma focus, guided internet-based CBT with a trauma focus, Narrative Exposure Therapy and Present-Centred Therapy. Emerging evidence comes from newer interventions such as Virtual Reality Therapy ( 22).

EMDR therapy is an individual therapy originally designed to alleviate the negative feelings associated with the traumatic memories ( 23). During EMDR sessions the patient attends to emotionally disturbing material in brief sequential doses while at the same time focusing on external stimuli. Distracting stimuli can vary from the most common used lateral eye movements to a variety of other stimuli including audio stimulation, hand tapping, and making calculations. Shapiro suggested that EMDR treatment facilitates the access to the traumatic memory network so that information processing is enhanced, while new associations are forged between the traumatic memory and more adaptive memories or information. The internal and external triggers are desensitized and thereby trauma related symptoms are alleviated ( 23).

Data on the application and effectiveness of trauma treatment in children and adults with autism are scarce. Preliminary findings from a few case reports suggest EMDR therapy for PTSD to be feasible and potentially effective for children and adults with ASD also in case of comorbid intellectual disabilities ( 24, 25). Controlled studies are lacking. Only one controlled study has been published that describes the feasibility and efficacy of EMDR for trauma-related symptoms in adults with autism ( 8). Results showed a significant reduction of symptoms of post-traumatic stress (measured with the Impact of Event Scale-Revised, IES: d=1.16, Figure 1), and a variety of other mental health problems among which severity of autistic features (measured with the Social Responsiveness Scale-Adult version, SRS-A: d=0.39, Figure 2). The positive results were maintained at follow-up. The results suggest EMDR therapy added to TAU (treatment as usual) to be a feasible and potentially effective treatment for individuals with ASD who suffer from the consequences of exposure to distressing events. It should be noted that the study was based on a small sample of participants (n=21).

The significant reduction of autistic features concerning social motivation and communication following EMDR therapy, and at follow-up, albeit with a small effect size, is remarkable. A possible explanation for this finding might be that the clinical manifestation of autistic symptoms decreases when individuals with ASD experience less trauma-related stress and psychological distress. Hence, it is conceivable that trauma-related symptoms are a moderator for the severity of ASD symptoms, such that exposure to trauma and other adverse events exacerbate autistic core features. Another possible explanation for the observed reduction of autistic features in the study is diagnostic overshadowing: symptoms of PTSD can be masked by symptoms of autism, therefore symptoms of PTSD, previously seen as features of ASD, might have declined as a result of EMDR therapy ( 8).

CBT with a Trauma Focus (CBT-T) includes all treatments aiming to alleviate trauma related symptoms by addressing and changing the thoughts, beliefs, and behavior. CBT-T includes doing homework, psycho education, and doing behavioral experiments such as exposure and working on stress management ( 22). For the treatment of children with PTSD it has shown to be important to involve the caregivers to strengthen caregiver-child relationships ( 22). Modified versions of CBT interventions may result in reduced trauma symptoms in people with ASD ( 26). Preliminary recommendations of adapting current trauma focused cognitive behavioral therapy for patients with ASD are provided ( 26). The most important adaptions are to limit assessment and interventions relying on verbal language and abstract reasoning. Reliance on the verbal report of a patient with ASD during exposure to a traumatic event may be challenging because of a different sense making. It is important to use multiple reporters (e.g., caregivers, parents). Providing concrete descriptions can be helpful and combining oral speech with visual representations. Furthermore, attention should be paid to generalizing new skills in different settings ( 26).

Prolonged Exposure is a type of CBT during which the patient with PTSD is helped to confront his traumatic memory by using a verbal narrative technique that involves detailed retelling of the traumatic experience that is then recorded and listened to on a repeated basis with the goal of habituation ( 22). This is combined with real life (in vivo) exposure to fear-evoking situations, also with the aim of habituation. It is recommended to make a step-by-step plan in a structural way. External rewards are essential when conducting in vivo exposure with people with ASD ( 26). It may be necessary to modify the rating scale to measure distress during exposure, e.g., by providing clear examples of different ratings along with personalized cues. The therapist may also rate the severity of the symptoms during the exposure ( 26).

Narrative Exposure Therapy (NET) is based on CBT. The therapist guides the patient in the development of a chronological, autobiographical narrative of his life including the most significant positive and negative events. Emotional processing is facilitated by using CBT techniques. Especially the difficult moments, such as traumatic events will be discussed in detail. The aim is to process overwhelming experiences and alleviate trauma related symptoms ( 22). There are, however, no research data available about NET in adults with autism.

Present-Centred Therapy, recommended as the second best in the treatment of PTSD symptoms, targets daily challenges related to trauma symptoms. It consists of psycho-education about PTSD symptoms and its effect on daily life, training effective strategies to deal with daily challenges and homework to practice new skills ( 22). No research data are available about Present-Centred Therapy in adults with autism. From clinical practice it is however known that identifying daily challenges and developing self- management skills are essential elements of the treatment of people with ASD.

CASE STUDY: TREATMENT COURSE

Beline's outpatient treatment started with psycho-educational therapy. Subsequently, the psychological treatment focused on emotion regulation, including affect-education, training in the use of a phased crisis plan, and reducing anxiety. During the treatment, the severity and complexity of her complaints became increasingly clear, and it became more difficult to include her surroundings in this. Never-mentioned negative experiences came up during the treatment sessions, such as bullying, sexual assault, and experiences of confinement during earlier admissions. A start was made with EMDR. Because of Beline's difficulty in putting her experiences into words, the therapist and Beline decided to visualize her experiences by making drawings of them. After the first EMDR sessions, the tension increased enormously. At that time, there were several changes and disappointments. Suicidality, which could not be accurately assessed, played a role in deciding that the EMDR treatment in an outpatient setting could not be continued. Admission to an enclosed ward of a general psychiatric clinic followed. Since then, it has not been possible to find a suitable treatment setting for Beline.

At the general psychiatric clinic, most of the team members did not have any experience with working with people with an ASD. Furthermore, the noisiness and unstructured daily rhythm at the clinic had a negative effect on Beline's status and her suicidal behavior increased. Not only Beline but also the nurses were overloaded which resulted in moving from clinic to clinic.

POINTS OF ATTENTION AND PITFALLS IN THE DIAGNOSIS AND TREATMENT OF TRAUMA IN AUTISM

Trauma history and associated trauma-related symptoms should be routinely questioned at the diagnostic stage in people with autism, considering their limitations in social communication. That what is not explicitly asked often remains undisclosed. A helpful instrument is the Diagnostic Interview Trauma and Stressors for individuals with mild intellectual impairment, (DITS-LVB [Dutch], ( 27) because of the concrete, visualized, and structured way in which potentially traumatic events and trauma-related symptoms are questioned.

Once severe impairments in self- and emotion regulation are present, like suicidal and self-harming behavior, it is crucial to train adaptive regulation skills systematically before and during trauma treatment. Dialectical Behavior Therapy offers a treatment philosophy for this purpose that is currently being scientifically investigated in adults with autism. An autonomy-promoting policy that is unconditionally supported by the patient, family, and care system is essential because of a risk of parallel processes, such as the repetition of overly exclusive relationships with the patient or the constant taking over of control. Therefore team-wide consensus about treatment policy is relevant. Without paying special attention to this, treatment lines and teams can fall apart.

CONCLUSION

Early recognition of traumatic experiences and early treatment of their consequences is very important. Particularly in the case of late recognition and treatment, training of self- and emotion regulation skills is crucial in addition to the treatment of trauma in a context that considers several aspects of autism. The different forms of treatment of trauma described in this chapter are needed to be further investigated in people with ASD. This can be helpful to improve our understanding of the factors that play a role in the treatment of choice.

Conflict of interest: The authors declare no potential conflicts of interest with respect to research, authorship, and/or publication of this manuscript.

Copyright and permission statement: The authors confirm that the materials included in this chapter do not violate copyright laws. Where relevant, appropriate permissions have been obtained from the original copyright holder(s), and all original sources have been appropriately acknowledged or referenced.

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Clinical and scientific data show a higher risk of adverse events and trauma in people with an autism spectrum disorder (ASD). These experiences are, however, often undiagnosed and untreated in autism. Diagnosing trauma- and autism-related symptoms is complicated due to the overlap between these two. Several pitfalls and points of attention can be mentioned.

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Being Autistic and Black - Clare Lawrence, Sheine Peart, Hadiza Abdulrahman

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Being Autistic and Black - Clare Lawrence, Sheine Peart, Hadiza Abdulrahman

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For a start, there isn't even agreement about terminology. Different people use 'Kanner's Autism', 'Asperger syndrome', 'Autism Spectrum Disorder', 'Aspie', and 'Autist'. The autistic community has indicated a preference for the term autistic people - so this is what this article uses. Similarly, some people use the term 'BAME' to refer to Black, Asian and Minority Ethnic communities.

As the recent controversial report of the Commission on Race and Ethnic Disparities indicates, this term is widely contested with some suggesting it is reductive and misleading as it implies that all people who are 'not White' can be categorised into one group. For the sake of this article, then, we will use the term Black in a political sense to recognise all groups who are through ethnicity, culture and heritage othered by dominant hegemonies and have chosen to form a common bond of identity.
So how do these two identities - being Black and being autistic - intersect? Well, that's complicated too.
Autism exists across all ethnicities, identities, backgrounds and cultures. According to the diagnostic criteria it refers to people who have 'difficulties in social communication and interaction' and 'restricted, repetitive patterns of behaviour, interests or activities', a sadly negative description. The British Medical Association suggests that over 700,000 people in the UK have been diagnosed as autistic. However, incidence of autism may be far higher due to both failure of identification and to the fact that some autistic people are increasingly viewing autism as an identity rather than a disorder that needs 'diagnosis'.

The true prevalence of autism therefore is unknown although it is estimated at the minimum to represent 1% of the global population. Until recently identification of autistic people within Black communities was lower than in White communities. The the exact reason for this was unclear although suggestions included lack of cultural responsivity, stigma, limited access to healthcare services, and/or poverty. The National Autistic Society's Make school Make Sense project in 2007 found inconsistent evidence about the prevalence of autism and that children with autism from Black communities experienced discrimination in relation to disability and ethnicity. It identified that services were not meeting people's cultural needs and that there was a lack of awareness of rights and relevant services in some communities.

More recent research suggests that there may now be less difference in the identified prevalence of autism between Black and White children although it also suggests that children from Black communities may be being identified as autistic later than their White counterparts.

Parents who took part in the National Autistic Society's project investigating the experience of autism within the Black community suggested that they felt that they 'face a raw deal as their needs are not understood in their cultural and religious context' and that they 'face more challenges than other communities when trying to access services and gain information'.

The first Autism Voice UK symposium in 2020 sought to investigate some of these issues and - importantly - to give people who are members of both the autistic and Black communities a greater voice. This symposium recognised that cultural, ethnic and religious sensitivities are important, and may be overlooked or not understood by professionals who are not part of the same community. Organisers identified a pressing need for more investigation, favouring research carried out by researchers with insider perspective. However, they also identified that few autistic academics are Black. Current research is having to lean - as with this article - on co-operation and intersectionality between members of the Black and the autistic research communities.

So, what can be done, practically and immediately, to improve the lives of Black autistic people and to support greater understanding across communities? Education, clearly, has an important role, and the need for improved support and understanding at school was a key finding in the NAS Perspectives report. Parents reported that their child's autistic behaviour was sometimes perceived as aggression or non-compliance, a finding that is distressingly echoed in statistics from the world beyond education. In their chapter Autism and operational policing, Chown and Beardon suggest that for Black people who are also autistic 'there is a risk of "double discrimination" when interacting with police officers' (p. 44). Clearly, although education of Black autistic children is hugely important, so is the education of the wider community about how autism may present in both children and adults who are Black.

Perhaps one of the most important ways to do this is for autistic Black people to have greater voice and greater visibility across cultures. The artwork for this article has been supplied by the artist Iqra Barbar, who identifies as an autistic Muslim woman of colour. Black actor Talia Grant, most famous for their role as the autistic character Brooke Hathaway in Hollyoaks, was the first openly autistic actor in a mainstream TV soap. Perhaps the most famous autistic artist of all, Stephen Wiltshire, is Black.

We all of us need to be aware that Black history intersects with autistic history, and that the autistic community is also the Black community. Greater appreciation of these simple facts can only be of benefit to us all.

Footnote:
We - the writers of this article - are aware that we are only scratching the surface of this complex subject. We have yet to fully consider the complex relationship that some Black communities have with disability issues, nor have we addressed the perceived readiness felt by some for medicine to pathologise Black communities for cultural behaviours. Specifically, we have yet to address the presentation of autism in Black girls.

We are hoping to recruit participants who identify as belonging to both the Black and the autistic communities for further research investigating some of these issues. If you are interested in taking part in this, please contact the writers using the contact details given. We hope to follow up this article with details of our findings and further considerations of this issue in the future.

# data[].attributes.attachment_link.description
For a start, there isn't even agreement about terminology. Different people use 'Kanner's Autism', 'Asperger syndrome', 'Autism Spectrum Disorder', 'Aspie', and 'Autist'. The autistic community has indicated a preference for the term autistic people - so this is what this article uses. Similarly, some people use the term 'BAME' to refer to Black, Asian and Minority Ethnic communities.

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National Autistic Society’s ‘Now I Know’ campaign on women’s and non binary people’s experiences of late autism diagnosis. 

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National Autistic Society’s ‘Now I Know’ campaign on women’s and non binary people’s experiences of late autism diagnosis. 

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Autistic women and non-binary people are everywhere. Many go through life without knowing they are autistic. In this campaign, we hear six of their stories, in their words.

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Autistic women and non-binary people are everywhere. Many go through life without knowing they are autistic. In this campaign, we hear six of their stories, in their words.

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‘Older Adults and Autism Spectrum Conditions’ an extract from Dr Wenn Lawson’s book.

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‘Older Adults and Autism Spectrum Conditions’ an extract from Dr Wenn Lawson’s book.

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“They Don't Know, Don't Show, or Don't Care”: Autism's White Privilege Problem - Morénike Giwa Onaiwu

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“They Don't Know, Don't Show, or Don't Care”: Autism's White Privilege Problem - Morénike Giwa Onaiwu

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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.

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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.

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Rebecca Charlton

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Rebecca Charlton, Senior Lecturer in Psychology at Goldsmiths, University of London, explores some of the challenges in researching ageing in autistic people and discusses what the research has found so far.

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The cognitive profile of middle-aged and older adults with high vs. low autistic traits

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The cognitive profile of middle-aged and older adults with high vs. low autistic traits

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Gavin R Stewart et al https://onlinelibrary.wiley.com/doi/10.1002/aur.2866

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Am I Autistic? Birmingham Open Media guide. 

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Am I Autistic? Birmingham Open Media guide. 

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We are living through a time of evolution in understanding about autism. Across the globe adults are finding out more about it and wondering, could this be me?
This booklet has been written to provide information, guidance, and reassurance before a diagnosis or self-identification of autism. Informal but informative, it offers key information and answers some of the many questions you may have.

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#Twitter thread on what it took for me to get my very late in life autism diagnosis. 

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#Twitter thread on what it took for me to get my very late in life autism diagnosis. 

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@NortherlyRose

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I'm in a remote place with patchy internet so this thread may get jumbled up when I post it. 
This is a personal reflection about what happened between first realising I might be autistic (at the age of 58, 3.5 yrs ago) and actually getting my autism assessment and diagnosis.
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I'm in a remote place with patchy internet so this thread may get jumbled up when I post it. 
This is a personal reflection about what happened between first realising I might be autistic (at the age of 58, 3.5 yrs ago) and actually getting my autism assessment and diagnosis.
1/

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I'm in a remote place with patchy internet so this thread may get jumbled up when I post it.
This is a personal reflection about what happened between first realising I might be autistic (at the age of 58, 3.5 yrs ago) and actually getting my autism assessment and diagnosis.
1/
— Autistic Rose (@NortherlyRose) August 4, 2022

# data[].attributes.attachment_link.metadata.attachment_props_source.data.text
I'm in a remote place with patchy internet so this thread may get jumbled up when I post it. 
This is a personal reflection about what happened between first realising I might be autistic (at the age of 58, 3.5 yrs ago) and actually getting my autism assessment and diagnosis.
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# data[].attributes.attachment_link.metadata.attachment_props.original_text
I'm in a remote place with patchy internet so this thread may get jumbled up when I post it. 
This is a personal reflection about what happened between first realising I might be autistic (at the age of 58, 3.5 yrs ago) and actually getting my autism assessment and diagnosis.
1/

# data[].attributes.attachment_link.metadata.attachment_props.text
I'm in a remote place with patchy internet so this thread may get jumbled up when I post it. 
This is a personal reflection about what happened between first realising I might be autistic (at the age of 58, 3.5 yrs ago) and actually getting my autism assessment and diagnosis.
1/

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What's it like being you? Growing old(er) with Autism Spectrum Conditions – A Scoping Study

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What's it like being you? Growing old(er) with Autism Spectrum Conditions – A Scoping Study

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Frauke Elichaoff

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Abstract

The aim of this scoping study was to understand which issues are of salience for the experiences of adults with Autism Spectrum Conditions (ASCs) as they grow older, in order to determine themes for a follow up study using in-depth interviews. Four adults (two female, two male) on the high-functioning end of the autism spectrum were interviewed with a purposely broad semi-structured interview schedule. The transcripts were analysed using Thematic Analysis to identify emerging themes. The themes identified are depression, effects of diagnosis, experiences with mental health professionals and therapists, the inverted relationship between educational level and career, the participant as autism expert, and communication/social interaction. The findings echo some existing research and present an insight into the lived experiences of older adults with autism. The themes identified in the scoping study will form the basis for further qualitative studies. Implications for further research are also discussed.

Keywords: Autism spectrum conditions, ASC,adults, aging, experiences

Introduction

The prevalence of Autism Spectrum Conditions (ASCs) in the UK is currently estimated at 1/100 (Baird et al., 2006). Prevalence in the 1960s, when Autism first began to be diagnosed in children, was estimated 0.5/1,000, showing a steep increase, but Brugha et al (2011) point out that the increase in diagnoses may be attributed to a widening of the diagnostic criteria, coupled with an increased awareness of the disorder by professionals and the public alike. This can lead to the assumption that not only is there a growing population of adults with a diagnosis of ASC, but also that there are an even greater number of adults living with ASC either without a formal diagnosis, with a misdiagnosis, or with no knowledge at all that they have an Autism Spectrum Condition.

The needs of, and services for children and adolescents with ASD have been the focus of much research, but it has been recognised that the same does not apply to adults, especially as they move towards middle and old age (Pellicano, Dinsmore, & Charman, 2014; Müller, Schuler, Burton, & Yates, 2003; Wright, Brooks, D'Astous, & Grandin, 2013). Not only is research on autism in old age necessary to identify support needs, researchers are also beginning to explore the lifespan trajectory of the disorder (Happé & Charlton, 2009). In recent years, autism related research has experienced a small but decisive shift towards a focus on older adults, and a number of leading academics in the field have highlighted the paucity of available research (Happé & Charlton, 2009; Wright et al., 2013). The UK's National Autistic Society (NAS) together with many leading autism researchers have declared an urgent need for research into the experiences and support needs of adults over the age of 50. Happé and Charlton (2012) produced a short review of research on autism in older adults, and identified three main areas for future research, one of which is Quality of Life in Old Age. Mukaetova-Ladinska, Perry, Baron, and Povey (2011) highlight the urgency to address and recognise the needs and experiences of older adults with autism.

In 2009, the Welsh government published a report of the circumstances and support needs of older people with autism, whilst in 2010, the National Adult Autism Strategy for England was published. This was the direct result of the 2009 Autism Act, legislation which was passed to secure the rights of adults with autism to access appropriate services. The authors of the Wales Report (Stuart-Hamilton et al., 2009) state specifically that there is a paucity of qualitative data available on the subjective experiences of older adults living with autism.

A systematic review of literature on Autism Spectrum Disorders and Aging conducted in 2013 (Wright, Brooks, D'Astous, & Grandin) shows that there is a growing body of research covering many aspects of aging with autism, including cognitive functioning and decline, services for adults with autism, and the prevalence of depression and anxiety in adults with ASCs. It also highlights the need for the development of adequate services to meet the needs of older adults with ASCs. Griffith, Totsika, Nash, and Hastings (2011) focus on the absence of accessible individualised services for adults with ASCs in the UK, citing the lack of knowledge within the system of health professionals as the main reason for inadequate support for adults with autism. Unemployment and underemployment is another issue identified by Wright, Brooks, D'Astous & Grandin (2013), with emphasis on the need to develop understanding and flexibility to accommodate individuals with ASCs within the workplace.

The existing research on older adults with autism imparts only a fragmented picture that rarely includes subjective accounts from individuals with autism themselves.

Milton (2014) reflects on knowledge production in studies on autism, highlighting the disparity in different models used to explore autism. Although there are a small number of 'insider' researchers, they are often ignored in spite of their expertise (Milton & Bracher, 2013). However, there is a growing body of research that aims to give a voice to individuals with autism, and to narrow the gap between the academic community and researchers with autism (Nicolaidis et al., 2011; Wright, Wright, Diener, & Eaton, 2014). The question how an accurate understanding of the experience of individuals with autism can be obtained, is the subject of a number of articles, especially in relation to the positionality of the researcher as 'insider'-'outsider' and how knowledge production shows disparate findings depending on which model of autism is favoured (Jones, Huws, & Beck, 2013; Milton, 2014).

A small number of qualitative studies aim to explore the lived experiences of children and adults with autism (Hurlbutt & Chalmers, 2002; Jones, Quigney, & Huws, 2003; Huws & Jones, 2008; Preece & Jordan, 2009; Jones, Zahl, & Huws, 2010). This current study forms part of an ongoing exploratory research into the lived experiences of older adults with autism in the UK.

Problem Statement

Autism (ASD) is a lifelong disorder, yet there is very little research on aging with ASD, and what the experiences and needs are for older adults.

Understanding how adults with ASD subjectively experience the process of aging and living with autism is crucial to the better comprehension of the lifespan trajectory of autism as well as being informative for other areas of research that investigate aspects such as needs for services or cognitive changes in ageing adults with autism.

Research Questions

What are the subjective lived experiences of older adults with autism spectrum conditions (ASCs) in the UK?

The central research question is purposively very broad, as analysis of the initial study will inform themes and questions for future interviews, which form part of a complex follow-on study.

In order for the themes to emerge freely from the participants accounts, the interview schedule for the scoping study focussed on three main areas: Current life situation, including diagnosis; growing older, and coping.

Purpose of the Study

The central aim of this investigation is to develop insight to the experience of being an older person with autism, and how aging affects the individual's experience of their autism. This research will complement and broaden the current fragmented picture of autism in older adults, as the little available research on this topic tends to focus either on cognitive aspects, or on policy-driven surveys to inform service providers. The central aim will be accomplished through a qualitative exploration of the lived experiences of older adults with autism.

Research Methods

Design

A qualitative approach was chosen as the most appropriate method to address the exploratory research question, and to gain an insight into the emotional landscape of adults with autism as they are growing older. Further pluralistic qualitative analysis will be used as a form of triangulation to give a holistic understanding of a little researched area (Frost et al, 2010).

Purposive sampling of a homogenous subset of the population of older adults with ASCs was appropriate to the research question, and the chosen analyses, which consists of two parts. The initial analysis, which is presented in this paper, is a Thematic Analysis (TA) (Braun & Clarke, 2006) in order to identify the main themes that are salient to the lived experiences of the sample, and to allow for a thorough description of the data set. Further analysis in the form of Interpretative Phenomenological Analysis (IPA) (Smith, Flowers, & Larkin, 2009) will be conducted as the next step, to gain an in-depth understanding of how individuals with autism perceive their own experience. However, Thematic Analysis was deemed an appropriate method to elicit the initial themes, as the aim was not to make assumptions on the nature of salient issues for older adults based on existing research findings with children and young adults.

Participants

Four participants were recruited within the UK for this scoping study. All participants are of white British ethnicity. Two are female, two male. Details of the study were advertised on online autism networks, and participants approached the researcher either through the initial advert or through snowballing.

All participants have been educated at degree level (or equivalent). All live independently, and none are currently employed full time. Three of the participants have been or are married, and have children.

The participants were aged 58-63. Due to the nature of the study, only individuals who are verbal and able to give informed consent were able to participate. Because further analysis will be conducted in the next step of the study using IPA (Interpretative Phenomenological Analysis), a homogenous sample was required and sampling was purposive. Homogeneity was provided in that all participants were middle aged, and had a diagnosis of Asperger Syndrome/Autism Spectrum Condition.

It is acknowledged that the participants present a particular subset within the population of aging adults with ASCs, especially in regard to the fact that all but one are involved in autism awareness campaigns and advocacy.

Data Collection

Prospective participants were sent information about the study and a consent form by email. In order to accommodate the needs of the participants, the interview location was determined by the participants' choice, three interviews were held at the participant's home, two on university premises. Every effort was made to make participants feel comfortable and to accommodate any sensory needs such as turning off fluorescent lighting. Permission was sought and obtained to audio record the interviews. At the beginning of the interview, participants were again given an information sheet and offered to ask any questions they may have. They signed the consent forms, and were given a copy for themselves.

A semi-structured interview schedule had been prepared covering three areas of investigation (Current life situation, including diagnosis; growing older, and coping). The aim was to let the participants shape the interview, and to not impose predetermined assumptions on what would be considered the salient themes, therefore questions were only asked if participants did not cover the three broad areas, or if more details were required.

The interviews ranged between 47 and 95 minutes in duration, and were subsequently transcribed verbatim for analysis. Furthermore, in order to increase credibility, the researcher made field notes and kept a reflexive journal throughout the interviewing as well as the analysis process.

An inductive thematic analysis (TA) was conducted on the transcribed interviews following Braun and Clarke's guide (2006), with the aim to provide a comprehensive descriptive report of the main themes. After familiarisation with the data through repeated readings of the transcripts, the author started generating codes line by line. After this phase, the codes were then re-read to focus on emerging themes, producing thematic maps to visualise the themes and their connections. Themes that were identified were then checked against the coding in order to confirm their fit.

Findings

The following themes were identified as representing the salient issues the participants talked about during their interviews: the effects of the diagnosis, depression, experiences with mental health professionals, the inverted relationship between educational level and lack of career, the participant as autism expert, and communication/social interactions.

Depression

All participants stated that at some points in their lives, often prior to their autism diagnosis, they had been diagnosed with depression and three out of the four participants had attempted suicide. Some felt that the depression was reactive in that it stemmed from the difficulties of the undiagnosed autism:

"The thing is that at the time I thought I was, well, I was depressed, I spent most of the time in tears to be honest, and now I know why."

Another participant makes a very similar statement:

"I had a lot of depressions, which I put down to the not understanding of the autism."

One participant felt that being treated for depression and anxiety didn't help because the underlying cause (autism) wasn't diagnosed:

"They say there was a history of depression or that there was anxiety. THAT's what I was treated for, but it never did any good. They seemed to just keep increasing things (medication) more and more, and it just, the world fell apart."

However, the depression is also described as being difficult to separate from the autism, especially when high levels of anxiety (social and otherwise) come into play.

"It was diagnosed as depression, I mean, I put forward a theory that the depression is a result of the anxiety and the team of doctors sort of accepted that and agreed."

Effects of the diagnosis

Most of the participants received their diagnosis within the last ten years. They spoke of the dramatic effect getting the diagnosis had on them. The path to getting a diagnosis was often a long and difficult one, in most cases preceded by diagnosis and treatment of depression and/or anxiety. The overarching response was that of "things falling into place" and of making sense of the past and present. However, for some there is also a sense of regret at not being diagnosed earlier in life:

"It wasn't a complete surprise, to be honest, I burst into tears and just said 'you're a bit late', because right from childhood things had been a bit of a disaster."

"Because it was really too late to do any good. Now I've realised there is a lot of it, and yes, it makes sense, also a lot of my childhood now makes sense. It's a pity that they couldn't have got something right then."

Others felt tremendous relief when they received the diagnosis:

"Yes, it felt wonderful, because it basically wiped out all the embarrassing memories, now I know why all those things have happened. [...] Now I know at least that it's not my moral character, it's not my basic character that's at fault."

"Oh look, it was just brilliant, it was just really helpful. [...] So the impact for me is that I felt that I now understood myself."

"It gave me a lot of explanations. I felt 'yes, a lot of it makes sense then'."

"You know, it hasn't been like a straightforward easy path, but it's just been very helpful to know."

Experiences with mental health professionals and therapists

Because of their histories of depression/anxiety, the participants had contact with a number of mental health professionals before, during and after their diagnosis. Overall, they report a lack of knowledge about and understanding of autism they encountered, and they feel that professionals in the mental health and therapeutic fields need to be educated in order to be helpful.

"My aim, my thing is, because I trained as an art psychotherapist, and because I consulted therapists, so I know that these people don't know about autism, it's not part of their training, and I know a lot of autistic people who have been let down by them, so my aim is to train people like that about autism."

"I met other autistic people, and it was just clear how people were being misdiagnosed left, right, and centre, and you know, people in the mental health field and in the therapy field need to know about it."

Another participant received her diagnosis because of an autism aware CBT therapist, but feels that psychoanalysis is not appropriate for individuals with autism, although the participant partly attributes this to the therapist not knowing about autism.

"I've been to Freudian therapy which is completely inappropriate. [...] I imagine that it would be very different if you went into the therapy with the autistic diagnosis and told the therapist that you are autistic, because in the absence of that, I really felt that she despised me, and the fact that you're not getting close, because you lie down and she's behind you, so you're not getting any feedback at all."

The participant as autism expert

The sample consisted of participants who are all educated to degree or postgraduate level, and who are highly knowledgeable about the subject of autism. Not only do they feel strongly about the need to educate mental health professionals and therapists, they want to be seen and heard as experts on autism, because of their insider perspective.

"Once I found I was on the spectrum, I started developing sessions about autism." "To me this is stuff I learned myself, so why wouldn't they (other adults with autism)

know this, but they don't , they get a diagnosis and if professionals don't tell them, they

don't know. It's really appalling, the diagnosis doesn't really help people, as it could, because they don't understand what it means."

Their expertise is important to them to educate and support peers, as well as the public and professionals.

"I was actually told, and these were the exact words, to research it, [...] so I did. Hence I'm now involved with local hospitals, the council and the NAS (National Autistic Society), I'm also governor of the (...) Mental Health Trust."

"I've had a couple of articles just published, and they just make a vast amount of difference, so that people actually think you're serious."

There is also a need to be listened to and autism advocacy is important to the participants. One participant talks

about the lack of support services:

"So every time it's one of the council meetings I stick my oar in, so until they change their way of doing things, they will keep getting moaned at."

Communication/social interactions

Issues with communication and social interactions seem to be pervasive throughout different areas of life for most participants. They affect their working life, as well as friendships, relationships and belonging to social groups such as church or peer groups.

"You're always getting things wrong, you speak at the wrong time, you know, when people are in conversation, or you can't, you're not following the conversation properly, or you're, you know what you want to say, but you don't express it the way you think you're expressing it."

"So you constantly need a reality check that your heart is in the right place, that you don't really mean to dismiss people, or be contemptuous, it's just something in my body language that comes out that way."

"I think that the whole sort of dating and you know, that thing is just much more difficult for people on the autism spectrum."

"There was something missing in the way I connected to people and I was constantly trying to find a way of fitting in."

Conclusion

These findings indicate that much further research is needed to address the issues raised by the participants' accounts. The theme of is one that is reflective of it being one area of impairment in Autism Spectrum Conditions, and for the participants it is one that remains pervasive throughout their lifespan. Communication issues seem to be based on a disconnect between what is perceived by the participants during interactions, and they are acutely aware that how they are perceived may differ from how they wished to communicate something. However, participants report that after having received the diagnosis, the understanding they gained about the condition helped them to become more aware of this disparity, and to share this information with others.

The fact that was a theme identified as being a running thread throughout the lives of the participants is supported by existing research that shows that depression is highly prevalent in adults with autism, and that lack of accurate diagnosis is an issue associated with this (Ghaziuddin, Ghazziuddin, & Greden, 2002). There is some suggestion that individuals with high- functioning autism are more likely to develop depression due to greater social awareness that may affect feelings of not fitting in, however, the authors do not discuss depression as a reactive disorder in greater detail. More research into the relationship between depression and autism is needed. Treating depression can only be successful when autism is diagnosed and treated alongside. However, treatment options for autism in adults are rare, along with the existing lack of appropriate services.

The existing depression is what led to many of the participants', a theme that was coloured by the negative experiences expressed by the participants, in particular the described ongoing lack of understanding of autism and how symptoms are expressed in adults. The participants represent only a small subset of the population of aging adults with autism, but their drive to educate mental health professionals, therapists and the public, is also driven by the lack of diagnoses for the majority of adults with autism. As one participant stated, the treatments for his depression and anxiety didn't work because the underlying and comorbid autism had not been diagnosed. Another participant stated how her depression improved greatly after getting an autism diagnosis, because it helped her make sense of her difficulties. The inability to obtain an accurate diagnosis of autism spectrum condition, or previous experiences of misdiagnoses are serious issues for older adults, who often feel that their life course could have been quite different, had they received their autism diagnosis earlier in life (Punshon, Skirrow, & Murphy, 2009). A retrospective chart study showed that the most common diagnoses prior to the autism diagnosis were anxiety, mood disorders and psychosis-related disorders (Guerts & Jansen, 2011). These findings highlight the necessity for better identification of autism in adults, and for professionals to receive the appropriate training that will enable them to identify the disorder.

Both themes of Depression and Experiences with mental health professionals and therapists ties in with the theme of the inverted relationship between the level of education and career. Depression interferes with the ability to work; and greater awareness of autism by mental health professionals, therapists, but also employers and colleagues, could mean greater success in achieving in the workplace for individuals with autism. Previous research had shown that the majority of adults with autism are either unemployed or underemployed in menial work (Gerhardt & Lanier, 2011; Taylor & Seltzer, 2011). However, high-functioning adults who were diagnosed late in life appear to have a higher educational level than others, and were more able to live independently (Levy & Perry, 2011). These findings are partly reflected in the sample of this current study, however, although all participants live independently, they reported many difficulties, and although education levels were high, these were not matched by successful working careers. However, they identified as communication and social interactions as a major obstacle to successful integration in the workplace, and these themes are echoed in the findings of Müller, Schuler, Burton and Yates (2003), who interviewed adults with autism about their vocational support needs.

The participant as partly relates to their wish to educate and inform, however it can also be seen as how the individual defines their (autistic) self. All confess a natural curiosity and love of learning, which led them to pursue the acquisition of knowledge not just about their autism, but also in terms of gaining qualifications in education. They represent knowledge about autism not just based on their 'insider' position, but by individual achievements such as acquiring expert knowledge to train others, or pursuing research within the field of adult autism. This of course is not generalizable or representative of the population of adults with autism, however, there are a growing number of research projects which include researchers on the autistic spectrum, and autism advocates who are vocal about their experiences and wish to share them with the wider public (Milton, & Bracher, 2013).

Effects of the diagnosis

In spite of all participants receiving their diagnosis relatively late in life, the effects overall have had a beneficial impact on their lives. Although most participants reported that the diagnosis did little to nothing in terms of access to services or benefits, the benefits were felt in making sense of the past, which in turn enabled them to find coping mechanisms for present. One participant's comment that they were relieved that their difficulties were not due to a faulty character is an echo of existing research, which found similar expressions of relief and being able to redefine their 'self' (Punshon, Skirrow, Murphy, 2009). Their experiences were also reflective of a study on the experience of diagnosis for young people with autism, which suggested that themes such as 'disclosure delay' and 'providing explanations' were equally salient to receiving the diagnosis at a young age (Huws & Jones, 2008).

Participants reported that in the majority of instances, support and benefits were based on diagnoses other than the autism, either mental health or physical disability. However, although they stated that an improvement in the availability of services was crucial, the overarching response to what they wished to see improvement in the most, was understanding of autism by those around them. One participant compared the situation to the slow and ongoing change in the public's perception and acceptance of homosexuality, with the hope that eventually a diagnosis of autism will lose the associated stigma.

The need to listen to how adults with autism experience living with the condition is important, as it impacts directly on identifying suitable services that accurately meet their needs. A qualitative study examining the experiences of parents of aging adults with autism identified themes that differed quite strongly from those that emerged during this current study (Griffith, Totsika, Nash, Roberts, Jones, & Hastings, 2012). For example, parents' experiences centred on the support they were providing, and their role of advocate. The adults in the current study did not mention parents much, or in the context of now having to care for them. However, a qualitative study exploring the support experiences of middle-aged adults with Asperger Syndrome identified themes that were similar to those identified in this current study, however, the authors warn that although research in this area is increasing, it is still limited, not reflecting the increasing demand for information (Griffith, Totsika, Nash, & Hastings, 2011).

The lack of available research on these identified themes, as well as other associated areas, is a serious issue for the growing population of older adults with autism spectrum conditions. This research adds to the understanding of the lived experiences of these adults, however, there are a number of limitations to this study. The sample for this scoping study is small, and presents a highly defined subset of the population of aging adults with autism in the UK. However, due to the nature of the study, it was not possible to interview adults that are non-verbal or have learning difficulties. The needs of adults on the lower end of the autism spectrum would be different and much more defined than those on the high-functioning end, and it is important to bear in mind that high-functioning cannot be equated with 'mild', a term most of the participants rejected. The aim of the study was to gain an understanding of the salient issues of growing older with autism from the perspective of the participants, rather than making assumption based on existing research into younger age groups. A number of findings have been reflected in related research, and it would be useful to further this research with a larger sample in order to see if findings can be generalised to the population of aging adults with autism (Müller, Schuler, & Yates, 2008). Because this phase was conceptualised as a scoping study, the findings of this study will form the basis for the second phase of interviews, which will aim to gain in depth understanding of some of the themes identified here. Although a qualitative study based on a small sample cannot be generalised, insights into the lived experiences of those with autism are valuable to translate research findings into gaining an understanding of the nature of how it is experienced. However, it is recognised that autism research needs to listen to the needs of those with the condition in terms of foci for research. Pellicano, Dinsmore and Charman (2014) state that research in biology, brain and cognition (related to autism) overshadows research into other area. They highlight the approach of involving stakeholders in research in order to identify priority areas for research, yet this approach has not often been adopted for autism research. In conclusion, this study adds to the growing number of qualitative studies that aim to explore the lived experiences of older adults with autism, and identifies areas of interest for further research. The themes that emerged during analysis reflect many of the findings of existing studies, and support the call for deeper involvement of autistic adults in the research process in order to accurately identify needs and develop appropriate support services.

Acknowledgements

The author(s) declare that there is no conflict of interest.

References

Milton, D. E. M., & Bracher, M. (2013). Autistics speak but are they heard? Medical Sociology online, 7(2), 61-69.

Müller, E., Schuler, A., Burton, B. A., & Yates, G. B. (2003). Meeting the vocational support needs of individuals with Asperger Syndrome and other autism spectrum disabilities. Journal of Vocational Rehabilitation, 18, 163-175.

Smith, J. A., Flowers, P., & Larkin, M. (2009). Interpretative phenomenological analysis: Theory, method and research. Sage.

Stuart-Hamilton, I., Griffith, G., Totsika, V., Nash, S., Hastings, R. P., Felce, D., & Kerr, M. (2009). The circumstances and support needs of older people with autism. Bangor University, Bangor, Final Report to the Welsh Assembly Government.

Copyright information

This work is licensed under a Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License.

About this article

# data[].attributes.attachment_link.keywords[]
the european journal of social & behavioural sciences

# data[].attributes.attachment_link.keywords[]
what's it like being you? growing old(er) with autism spectrum conditions – a scoping study

# data[].attributes.attachment_link.title
What's it like being you? Growing old(er) with Autism Spectrum Conditions - A Scoping Study

# data[].attributes.attachment_link.description
The aim of this scoping study was to understand which issues are of salience for the experiences of adults with Autism Spectrum Conditions (ASCs) as they grow older, in order to determine themes for a follow up study using in-depth interviews.

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Personal Identity After an Autism Diagnosis: Relationships With Self-Esteem, Mental Wellbeing, and Diagnostic Timing. Kirsten Corden, Rebecca Brewer and Eilidh Cage.

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Personal Identity After an Autism Diagnosis: Relationships With Self-Esteem, Mental Wellbeing, and Diagnostic Timing. Kirsten Corden, Rebecca Brewer and Eilidh Cage.

# data[].attributes.attachment_link.title
Personal Identity After an Autism Diagnosis: Relationships With Self-Esteem, Mental Wellbeing, and Diagnostic Timing

# data[].attributes.attachment_link.description
Adults are increasingly seeking autism diagnoses, although less is known about their experiences of diagnosis and personal identity (i.e., autism as part of “me”), and how this relates to self-esteem and wellbeing. One-hundred and fifty-one autistic adults completed an online survey including measur…

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Autism, ageing, and ageism.
@NortherlyRose

# data[].attributes.wish_content.attachment_props.text
#Thread
On #ageing from a personal #ActuallyAutistic perspective.
At nearly 62 I consider myself to be an ‘older person’, and quite ‘old’ objectively.
But although age is one of the ‘protected characteristics’, under UK equality legislation, I don’t feel very protected at all.
1/

# data[].attributes.wish_content.attachment_props.original_text
#Thread
On #ageing from a personal #ActuallyAutistic perspective.
At nearly 62 I consider myself to be an ‘older person’, and quite ‘old’ objectively.
But although age is one of the ‘protected characteristics’, under UK equality legislation, I don’t feel very protected at all.
1/

# data[].attributes.attachment_link.embed_code
#Thread
On #ageing from a personal #ActuallyAutistic perspective.
At nearly 62 I consider myself to be an ‘older person’, and quite ‘old’ objectively.
But although age is one of the ‘protected characteristics’, under UK equality legislation, I don’t feel very protected at all.
1/
— Autistic Rose (@NortherlyRose) December 4, 2021

# data[].attributes.attachment_link.metadata.attachment_props_source.data.text
#Thread
On #ageing from a personal #ActuallyAutistic perspective.
At nearly 62 I consider myself to be an ‘older person’, and quite ‘old’ objectively.
But although age is one of the ‘protected characteristics’, under UK equality legislation, I don’t feel very protected at all.
1/

# data[].attributes.attachment_link.metadata.attachment_props.original_text
#Thread
On #ageing from a personal #ActuallyAutistic perspective.
At nearly 62 I consider myself to be an ‘older person’, and quite ‘old’ objectively.
But although age is one of the ‘protected characteristics’, under UK equality legislation, I don’t feel very protected at all.
1/

# data[].attributes.attachment_link.metadata.attachment_props.text
#Thread
On #ageing from a personal #ActuallyAutistic perspective.
At nearly 62 I consider myself to be an ‘older person’, and quite ‘old’ objectively.
But although age is one of the ‘protected characteristics’, under UK equality legislation, I don’t feel very protected at all.
1/

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A #Twitter thread about positive autistic identity.

# data[].attributes.subject
A #Twitter thread about positive autistic identity.

# data[].attributes.body
@NortherlyRose

# data[].attributes.wish_content.attachment_props.text
A #thread about positive  #autistic #identity.
The work I’ve been doing since discovering I’m autistic at the age of 58 is all about learning to love my autistic self.
In a world where the #autism narrative is so negative, it’s not surprising this can be really challenging.
1/

# data[].attributes.wish_content.attachment_props.original_text
A #thread about positive  #autistic #identity.
The work I’ve been doing since discovering I’m autistic at the age of 58 is all about learning to love my autistic self.
In a world where the #autism narrative is so negative, it’s not surprising this can be really challenging.
1/

# data[].attributes.attachment_link.embed_code
A #thread about positive #autistic #identity.
The work I’ve been doing since discovering I’m autistic at the age of 58 is all about learning to love my autistic self.
In a world where the #autism narrative is so negative, it’s not surprising this can be really challenging.
1/
— Autistic Rose (@NortherlyRose) December 6, 2020

# data[].attributes.attachment_link.metadata.attachment_props_source.data.text
A #thread about positive  #autistic #identity.
The work I’ve been doing since discovering I’m autistic at the age of 58 is all about learning to love my autistic self.
In a world where the #autism narrative is so negative, it’s not surprising this can be really challenging.
1/

# data[].attributes.attachment_link.metadata.attachment_props.original_text
A #thread about positive  #autistic #identity.
The work I’ve been doing since discovering I’m autistic at the age of 58 is all about learning to love my autistic self.
In a world where the #autism narrative is so negative, it’s not surprising this can be really challenging.
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# data[].attributes.attachment_link.metadata.attachment_props.text
A #thread about positive  #autistic #identity.
The work I’ve been doing since discovering I’m autistic at the age of 58 is all about learning to love my autistic self.
In a world where the #autism narrative is so negative, it’s not surprising this can be really challenging.
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# data[].attributes.headline
Me and Melanie Sykes (#Twitter thread on late autism diagnosis) @NortherlyRose

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Me and Melanie Sykes (#Twitter thread on late autism diagnosis) @NortherlyRose

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#Thread
There’s been lots in the media about the discovery of autism later in life.
Since hearing @MsMelanieSykes talking about her autism assessment at the age of 51, I’ve been thinking quite a bit about this.
The @BBCWomansHour presenter asked Melanie how it had come about.
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# data[].attributes.wish_content.attachment_props.original_text
#Thread
There’s been lots in the media about the discovery of autism later in life.
Since hearing @MsMelanieSykes talking about her autism assessment at the age of 51, I’ve been thinking quite a bit about this.
The @BBCWomansHour presenter asked Melanie how it had come about.
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# data[].attributes.attachment_link.embed_code
#Thread
There’s been lots in the media about the discovery of autism later in life.
Since hearing @MsMelanieSykes talking about her autism assessment at the age of 51, I’ve been thinking quite a bit about this.
The @BBCWomansHour presenter asked Melanie how it had come about.
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— Autistic Rose (@NortherlyRose) November 24, 2021

# data[].attributes.attachment_link.metadata.attachment_props_source.data.text
#Thread
There’s been lots in the media about the discovery of autism later in life.
Since hearing @MsMelanieSykes talking about her autism assessment at the age of 51, I’ve been thinking quite a bit about this.
The @BBCWomansHour presenter asked Melanie how it had come about.
1/

# data[].attributes.attachment_link.metadata.attachment_props.original_text
#Thread
There’s been lots in the media about the discovery of autism later in life.
Since hearing @MsMelanieSykes talking about her autism assessment at the age of 51, I’ve been thinking quite a bit about this.
The @BBCWomansHour presenter asked Melanie how it had come about.
1/

# data[].attributes.attachment_link.metadata.attachment_props.text
#Thread
There’s been lots in the media about the discovery of autism later in life.
Since hearing @MsMelanieSykes talking about her autism assessment at the age of 51, I’ve been thinking quite a bit about this.
The @BBCWomansHour presenter asked Melanie how it had come about.
1/

# data[].attributes.headline
Centre for Ageing Better: ‘Ageism: What’s the harm?’ (report) 

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Centre for Ageing Better: ‘Ageism: What’s the harm?’ (report) 

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Why I’m proud to be autistic (a late recognised, older person’s perspective) @NortherlyRose

# data[].attributes.subject
Why I’m proud to be autistic (a late recognised, older person’s perspective) @NortherlyRose

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https://twitter.com/northerlyrose/status/1405749188697092100?s=46&t=NyoikGr4Wg-QgEpVVLDFew

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‘A way to be me’: Autobiographical reflections of autistic adults diagnosed in mid-to-late adulthood

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‘A way to be me’: Autobiographical reflections of autistic adults diagnosed in mid-to-late adulthood

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Rozanna Lilley et al

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‘I was exhausted trying to figure it out’: The experiences of females receiving an autism diagnosis in middle to late adulthood

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‘I was exhausted trying to figure it out’: The experiences of females receiving an autism diagnosis in middle to late adulthood

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Alexandra Leedham et al

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Journey to diagnosis for women with autism 

# data[].attributes.subject
Journey to diagnosis for women with autism 

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Dori Zener

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Autism research is ‘all about the blokes and the kids’: Autistic women breaking the silence on menopause

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Autism research is ‘all about the blokes and the kids’: Autistic women breaking the silence on menopause

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Rachel L Moseley, Tanya Druce, and Julie M Turner-Cobb

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‘When my autism broke’: A qualitative study spotlighting autistic voices on menopause.

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‘When my autism broke’: A qualitative study spotlighting autistic voices on menopause.

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Rachel L Moseley, Tanya Druce, and Julie M Turner-Cobb

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Autism. 2020 Aug; 24(6): 1423-1437.

Abstract

Autistic women often struggle with the onset of menstruation, a key transition point in the female reproductive lifespan. Presently, there is no research investigating how autistic people navigate the menopausal transition, and whether it poses additional challenges in addition to those already faced by neurotypical women. As a preliminary participatory study in this area, we conducted an online focus group with seven autistic individuals, aged 49-63 years (median = 64.5 years) and assigned female at birth, to explore the state of knowledge about the menopause in autism, difficulties the menopause might bring, support that might be needed, and what questions require scientific investigation. Thematic analysis of the discussion generated three themes: (a) lack of knowledge and understanding; (b) cracking the mask and adaptive functioning; and (c) finding support. Themes suggested a lack of professional knowledge, understanding and communication about menopause for autistic people, and an absence of support. Menopause was discussed as heightening pre-existing and generating new cognitive, social, emotional and sensory difficulties. This study illustrates the need for greater focus of attention towards how autistic people cope with the major life transition of menopause.

Lay abstract

Autistic girls are known to struggle with the onset of menstruation, reporting that during their period, sensory sensitivities are heightened, it becomes more difficult to think clearly and control their emotions and they struggle more with everyday life and self-care. Yet surprisingly, nothing is known about how autistic women handle the menopausal transition in midlife. In non-autistic women, the menopause brings many physical changes and challenging symptoms from hot flushes to feeling more anxious and depressed. Because autistic women are already vulnerable to suicide, poor physical and mental health, and because they may already struggle with planning, controlling their emotions and coping with change, the menopause may be an especially challenging time. Yet, not one single study exists on the menopause in autism, so we conducted an online discussion (focus group) with seven autistic women. They confirmed that very little is known about menopause in autistic people, very little support is available and that menopause might be especially difficult for autistic people. Autism-related difficulties (including sensory sensitivity, socializing with others and communicating needs) were reported to worsen during the menopause, often so dramatically that some participants suggested they found it impossible to continue to mask their struggles. Participants also reported having extreme meltdowns, experiencing anxiety and depression, and feeling suicidal. This study highlights how important it is that professionals pay attention to menopause in autism, and discusses future research directions.

Keywords: autistic people, autistic women, climacteric syndrome, knowledge, menopause, perimenopause, reproductive lifespan, sensory sensitivity, support

Autistic women are historically under-researched and their experiences under-represented. The lack of lifespan research specific to autistic women is striking, considering the particular health and mortality risks that are inherent to being biologically female ( Hoyt & Falconi, 2015). Many of these female-specific risks are associated with reproductive transition points: times where major reorganization of neuroendocrine systems gives rise to physiological and psychological changes, and where exposure to stress and other environmental factors has a heightened impact on health and well-being ( Ben-Shlomo et al., 2016; Halfon et al., 2014; Hoyt & Falconi, 2015; Viner et al., 2015). The first of these is female puberty, which is associated, among other changes, with a surge in anxious and depressive symptoms, increased baseline cortisol and heightened stress reactivity, and with increased prevalence of autoimmune diseases and cancer ( Hoyt & Falconi, 2015; Viner et al., 2015). Major shifts in the neuroendocrine system also occur when women enter perimenopause and the subsequent menopausal period,1 when rates of morbidity surge again ( Hoyt & Falconi, 2015). However, very little is known about how autistic people2 manage these endocrine changes associated with physical, cognitive and emotional symptoms. Furthermore, it is unknown whether such changes in the endocrine milieu of autistic people engender difficulties and risks that are the same or different to those observed in the neurotypical population.

Admirable efforts have been made to address concerns relating to issues of puberty, menarche and menstruation. Caregiver reports suggest that dysmenorrhoea (painful periods) and premenstrual dysphoria are common, and self-injury, repetitive behaviour and sensory sensitivity increase around menstruation ( Burke et al., 2010; Hamilton et al., 2011; Obaydi & Puri, 2008). Autistic individuals themselves corroborate experiencing a 'dramatic' worsening of their communicative abilities, emotion dysregulation and sensory sensitivities ( Steward et al., 2018). Minimally verbal autistic individuals may be dependent on their supporters recognizing signs of pain, distress and discomfort during or preceding menstruation ( Cummins et al., 2018).

The growth of research in this area is encouraging, but very little attention has been paid to major endocrine changes occurring later in life. Women in the Western world may begin to experience menopausal symptoms from approximately 40 years of age ( National Health Service, 2018; North American Menopause Society, 2019), signifying the oncoming end of their reproductive lifespan. Most have reached the menopause, the point at which periods have been absent for 12 months, between 50 and 53 years of age ( Palacios et al., 2010). Within the menopausal transition and after menopause, women can experience a host of symptoms, known as climacteric syndrome, which can last between 4 and 8 years. These are rooted in hormonal changes which affect multiple neurotransmitter systems, including serotonin, acetylcholine and gamma-aminobutyric acid (GABA). Cognitive repercussions are felt in reported difficulties with memory and executive functioning ( Karlamangla et al., 2017; Koebele & Bimonte-Nelson, 2017; Weber et al., 2014). Rates of depression, anxiety and suicidal feelings surge ( Pinkerton & Stovall, 2010; Soares & Maki, 2010; Usall et al., 2009), perhaps partly underpinned by the effects of the menopause on the hypothalamic-pituitary-adrenal (HPA) axis, which controls the stress response ( Gordon et al., 2016; Reed et al., 2016). Perimenopause and menopause are also associated with a raft of physiological symptoms and long-term health risks which, alongside the mood and cognitive changes, affect relationships, daily living, work performance and general well-being ( Newhart, 2013). Accordingly, many women fear the menopause ( Hoga et al., 2015) and these attitudes are important, as is the social environment. Resilience to menopausal symptoms is associated with strong social support, optimism, non-avoidant coping strategies and a lack of historical psychiatric illness ( Deeks, 2003; Duffy et al., 2013; Pérez-López et al., 2014), with studies also finding protective effects conferred by greater physical fitness and activity levels.

This literature pertains only to the experiences on non-autistic people - the voices of autistic people are nowhere to be heard. We suggest that menopausal changes and associated physical and psychological morbidity, if also relevant to autistic people, raise serious concerns when we consider that autistic people are already at greater risk of mental ill-health and suicidality ( Cassidy et al., 2018; Lai et al., 2019); experience life events as more stressful and have poorer coping and emotion regulation skills ( Hirvikoski & Blomqvist, 2015; Mazefsky & White, 2014); and tend to lack social support, which further reduces with age ( Happé & Charlton, 2012; Povey et al., 2011). Quite regards from the menopause, a wealth of literature has documented that autistic people already face significant difficulties with executive function, and that this affects mental health ( Wallace et al., 2016; Zimmerman et al., 2017). Furthermore, we query how menopausal changes might affect this group who, tending towards poorer physical health, diet and fitness, are already at elevated risk of morbidity and mortality ( Cashin et al., 2018; Hirvikoski et al., 2016). This is especially worrying when we consider that ironically, despite their poorer health, autistic people face major accessibility barriers to medical support ( Crane et al., 2019; Mason et al., 2019).

Despite this striking backdrop, we are unaware of a single study to date that has explored how autistic people cope with the menopausal transition. This paucity reflects the general lack of understanding around ageing in autism and highlights the vital need for research in this area ( Happé & Charlton, 2012; Michael, 2016; Roestorf & Bowler, 2016; Wright et al., 2019). What little work exists suggests that autistic people may exhibit a different and sometimes less extreme trajectory of cognitive ageing than that seen in non-autistic people ( Geurts & Vissers, 2012; Koch et al., 2015; Raznahan et al., 2010; Roestorf & Bowler, 2016). Alongside reduced social support, they also experience high rates of psychological distress, depression, anxiety and psychosocial difficulty as they get older ( Magiati et al., 2014; Mukaetova-Ladinska & Stuart-Hamilton, 2016; Patra, 2016; Stuart-Hamilton & Morgan, 2011; Uljarević et al., 2019). Since there is no documentation of menopausal experiences, it is possible that autistic people may show a less exaggerated change during the menopausal transition. Alternatively, it may be that as with menstruation, the challenges of menopause exacerbate autistic difficulties, and that autistic people are especially vulnerable to menopausal symptoms. Their vulnerability could likely be heightened by a general lack of appropriate psychoeducation around sexual and reproductive health ( Tullis & Zangrillo, 2013), and, in some, an inability to communicate confusion, discomfort, pain or distress associated with menopausal symptoms.

Through means of an online focus group with autistic participants, we aimed in this pilot investigation to explore how autistic individuals perceive the extant state of knowledge around menopause in autism; whether they believe the menopause might pose particular challenges for autistic people above non-autistic experiences; what kind of support might be needed; and, given the importance of participatory research ( Fletcher-Watson et al., 2018), what kind of questions should guide future research.

Method

Participants and recruitment

Following recommendations ( Bloor et al., 2012; Wilkerson et al., 2014), the online focus group was kept small. It included seven participants obtained using a purposive sampling approach, and two moderators to facilitate the group. Permission to advertise the study was sought from the moderators of two Facebook support groups run by and for autistic adults. The call for participants specified that participants should be self-diagnosed or formally diagnosed with autism, currently navigating the menopausal transition (experiencing perimenopausal or menopausal symptoms) or believe themselves to have been through the menopause. It was expected that midlife individuals who likely identified as female would respond, but there were no exclusion criteria regarding age range or gender identity. As a relatively 'young' diagnostic category which has undergone substantial nosological changes, a problematic bias exists in research: if ageing studies recruit only females with formal autism diagnoses, these individuals will likely be those who met criteria in the period where the diagnostic category excluded people with more subtle presentations and without intellectual disability (ID) - a time when female autism was scarcely recognized ( Happé & Charlton, 2012). An increasing number of autistic individuals, especially women, are diagnosed in adulthood ( Bargiela et al., 2016), but as this path is inaccessible for many, there is a growing trend of self-diagnosis or self-identifying as autistic ( Lewis, 2017). Given that many of the autistic people in this study would have been children in a time with restricted diagnostic criteria and/or little recognition of autism in girls, we accepted self-diagnosed and formally diagnosed individuals. We did however conduct two brief, well-validated screening tests (the Autism Spectrum Quotient (AQ-10) ( Allison et al., 2012) and Ritvo Autism Asperger Diagnostic Scale-14 (RAADS-14) ( Eriksson et al., 2013)) to partially corroborate diagnoses.

Relevant demographics of the sample are displayed in Table 1 , along with their scores on the screening questionnaires. Full data, including socioeconomic status, ethnicity and educational attainment, were not collected, but the average age of the sample was 54.8 years (median = 54.5 years). We were unable to acquire full information for one of the participants who was only present during the first 20 min of the discussion, but their partial data were included.

Table 1.

Participant number

Age

Gender identity

Nationality

Diagnostic status

Self-reported menopausal status during the study

AQ-10 score

RAADS-R score

As can be seen in Table 1 , both diagnosed and self-identifying participants scored highly on the AQ-10, the RAADS-14 or both (P2 did not complete either). The mean and median scores for autistic adults on the RAADS-14, in the original publication, were 30 (standard deviation ( SD): 8.6) and 32, respectively ( Eriksson et al., 2013), as compared to markedly lower scores in other clinical populations (e.g. attention deficit hyperactivity disorder (ADHD) participants having a mean score of 15.4, SD: 9.3). Autistic adults in the original investigation of the AQ-10 scored an average of 7.9 of 10 (standard deviation: 1.9) as compared to a normative score of 2.7 ( SD: 2) ( Allison et al., 2012); a cut-off score of 6 was identified as best balancing specificity and sensitivity, and scores of 6 and above have since been ratified as the point at which full assessment is advisable, at least for autistic men without ID ( Booth et al., 2013; Lundin et al., 2019). On the RAADS-14, three of the five participants who completed it scored above cut-off (P4 having experienced frustration with the inflexibility of the test). On the AQ-10, five of the six participants who completed it scored above cut-off. Scores below the cut-offs are not concerning, as the suitability of both measures for autistic women has been queried ( Lundin et al., 2019; Moseley et al., 2018; Murray et al., 2017, 2019).

The menopause is notoriously difficult to identify without invasive procedures, and even blood and hormone tests are highly fallible ( North American Menopause Society, 2019). In Britain, the menopause is normally identified through self-reported symptoms alone ( National Institute of Health and Care Excellence (NICE), 2015). With the understanding that the menopause has been reached when a woman has not experienced a period for 12 consecutive months ( North American Menopause Society, 2019; Palacios et al., 2010), all of our participants reported that they were post-menopausal.

Materials

A list of questions for the focus group discussion was devised by the three researchers following extensive discussion. The format was informed by recommendations for focus group research ( Bloor et al., 2012; Wilkerson et al., 2014), aforementioned experiences of the menopause in non-autistic and physically disabled women ( Kalpakjian et al., 2007), and the noticeable lack of information on the menopause in autism. The seven questions (see the Supplemental material) were used as a springboard for discussion. They covered current knowledge of the menopause and targets for research; whether the menopausal experience would be expected to differ for autistic people, and how; extant support and ideas for optimal support. A concluding, eighth question gave participants the opportunity to add any final comments.

Study design and procedure

In consideration of the sensitivity of the topic and the needs of a cohort who might struggle with face-to-face or telephone interaction, the focus group occurred online. In addition to convenience and cost, online focus groups boast several advantages for qualitative research ( Bouchard, 2016; Forrestal et al., 2018; Reisner et al., 2018; Wilkerson et al., 2014; Woodyatt et al., 2016). According to these authors, the anonymity of an online forum decreases social influence and facilitates disclosure around sensitive topics. Further benefits are that the setting better equalizes participants, as they can respond at the same time; the synchronous formats mimic real-time discussion; and very importantly, recruitment is not limited to the geographic area. As participants in online focus groups tend to respond more concisely and pointedly, data quality and the number of themes produced are not compromised ( Abrams et al., 2015; Schneider et al., 2002; Underhill & Olmsted, 2003; Woodyatt et al., 2016).

Although prior knowledge of the questions forfeits the spontaneity of responses ( Reisner et al., 2018), it was seen as highly appropriate to mitigate the anxiety and uncertainty for this cohort. As such, alongside instructions for logging into the chat room, participants were sent the focus group questions, as well as some safety requests (e.g. mindful use of language, anonymity and non-disclosure of the discussion to others).

A private chat room was set up on an online server ( www.chatzy.com), and participants were given an identity number with which to sign in at an agreed date and time. The researchers followed the recommended approach of establishing rapport over email exchange during the arrangement of the focus group, and starting the session with an informal, friendly introduction ( Wilkerson et al., 2014). They then proceeded to post the numbered questions one by one, allowing time for participants to think and respond.

Ethics

The study was approved by the Bournemouth University Research Ethics Committee. As described above, the design of the study aimed to facilitate convenience and comfort of participants, as well as ensuring confidentiality, anonymity and safety.

Data analysis

Thematic analysis lends itself to contextually attuned analysis of both manifest and latent content which may not be explicitly present in participants' actual words ( Vaismoradi et al., 2013). Two of the authors (R.L.M. and J.M.T.C.) independently followed the six-step analysis pipeline for inductive thematic analysis described by Braun and Clarke (2012). Having established familiarity with the data, codes were devised, revised and refined to label descriptive and abstract features or ideas in the data. Perceived links between and clustering of codes allowed for construction of themes and subthemes, ideas that 'capture something important about the data in relation to the research question' ( Braun and Clarke, 2012: 63), which were checked back against the data. To ensure the credibility and dependability of our interpretation ( Anney, 2014), the authors compared and discussed their own analyses and discussed discrepancies before proceeding with shared agreement to define the final themes and subthemes. Furthermore, they returned to the data 1 month after coding to code it again to note any changes in interpretation over this time.

Thematic analysis is an active process of construction influenced by the experience and interests of the researcher. Reflexive considerations of the authors may be seen in the Supplemental material.

Results

Our participants, recruited from online support groups, seemed quick to acclimatize to the online environment. The dynamic of the group was one of respect, support and concern. Participants checked on each others' comfort with proceedings, allowed each other time to post responses before continuing, apologized for potential misunderstandings and showed concern when one participant dropped out. The views expressed were largely unanimous, hence their inclusion in themes below. With responses expressed as a percentage of all utterances (312) in the 1.5-h discussion, participant 4 was most active (31%), followed by participant 6 (20.8%), participant 5 (15.1%), participant 1 (13.5%), participant 3 (9.6%), participant 7 (9%) and participant 2 (1%).

The three themes interpreted from the data, each with a number of subthemes, can be seen in Figure 1 . Quotations from participants are followed by their identifier number (e.g. participant (P) x) and the number of the question (Q) that preceded the response. Items categorized under each theme and subtheme can be seen in full in the Supplemental material.

Lack of knowledge and understanding

The dearth of knowledge and understanding of the menopause in autism emerged starkly both in response to a direct question ('Is much known about how autistic women experience the menopause?') and throughout the focus group. Three subthemes emerged within this theme:

Professional versus patient expertise

On the part of professionals, participants perceived 'lack of any clue . . . as to how best help . . . zero clue and zero interest' (P2, Q2). They recognized that the autism research field mainly focuses on infants, children and young people. This lack of information had markedly negative consequences for some of our participants, who had, on experiencing menopausal symptoms, been concerned about their mental health:

Not knowing you're autistic on the first place - and then suddenly experiencing unprecedented phenomena which don't correlate with 'regular' menopause, so you don't know if it's menopause or not. So you wonder whether you're going nuts, or have some disease, or what. (P4, Q2)

This lack of interest from professionals was juxtaposed by the proactive efforts of participants to educate themselves with independent study and attendance at autism conferences. Knowledge about the menopause was thus perceived to exist only in dispersed pockets of the autistic community, where individuals were independent seekers of knowledge who were, at times, fighting 'an uphill battle' (P4, Q5) to have their voices heard by professionals. Participants highlighted a need for future research to systematically compare the menopausal transition in autistic and non-autistic people. Furthermore, they highlighted the need for longitudinal research to study, in autistic people, the changes from pre-menopausal function and their effect on communication and relationships, sensory sensitivities, everyday function and mental health.

Barriers to progress

A number of factors were recognized as impediments to knowledge around menopause in autism. As a generic barrier, participants recognized that menopause tends to be perceived as somewhat distasteful and thus taboo. Furthermore, the likelihood of lacking a social networking might make it difficult for autistic people 'to establish what is perhaps normal for those entering menopause' (P2, Q2), and left our own participants alone with their experiences: 'you don't know what is "normal" only that it isn't "normal" to you, let alone anyone else' (P3, Q2). The characteristic difficulties that autistic people face in expressing their thoughts, emotions and experiences, including alexithymia and interoceptive awareness, were another barrier to information and communicating with doctors: 'At times I can remember not being able to identify or communicate any of what I was experiencing' (P7, Q7). The participants recognized that autistic people with ID and/or minimal spoken communication might suffer greatly from being unable to communicate their experience. Participants also suggested that undiagnosed and/or unrecognized autism might bar individuals from finding peer support, from finding relevant information and from communicating their experiences to others. A lack of diagnosis might also be a barrier to coping with the menopause; participants queried 'whether a diagnosis helps with self-awareness and therefore helps with coping with the big M' (P5, Q6). They implied that knowing themselves might have made them slightly kinder to themselves and aware of their limits. Recognizing autism would give individuals a frame of reference for understanding themselves and both general and menopause-related difficulties. Being able to understand the menopausal experience through the light of autism was apparently critical for some participants: 'I would probably have ended up out of work, mentally ill if I didn't find out I am autistic' (P4, Q7).

Cracking the mask and adaptive functioning

A major theme underpinning several streams of discussion was the effect of the menopause across daily life, cognitive and emotional functioning.

Menopause amplifies autistic presentation

Interestingly, those of our participants with formal autism diagnoses (P3, P4, P5, P6, P7) had been diagnosed in midlife, with two participants (P4 and P5) making reference to menopausal changes preceding their diagnosis. It appeared that the menopause exacerbated pre-existing issues and brought on new problems that led them to seek clinical assessment for autism or other difficulties. Introducing the term masking, participants noted that this had become much more difficult and previous effective coping skills were failing:

When I talk about that time, I say, 'My autism broke'. Before that, my autism was working fairly well for me, providing me with good job skills. (P4, Q2).

Sensory heightening and executive decline

The heightening of extent sensitivities and the emergence of new ones, such as to food, was a major topic for participants. Several participants noted that menopausal hot flushes might be especially difficult for autistic people with sensory sensitivity ('Those of us who are sensitive to heat and cold, with other sensory difficulties, will be doubly disadvantaged by the sudden hot flushes' (P2, Q2)), as would be the change in periods. As well as affecting communication, sensory difficulties were linked to mood. Several participants mentioned meltdowns in the context of sensory sensitivity:

During menopause I was on 3 meltdowns per week at times . . . My meltdowns were of the nature that people would call a 'basket case'. . . Would strip down to underwear sometimes during a meltdown at work. (P4, Q3)

At the same time, as sensory sensitivities increased, participants commented on a deterioration of executive function which affected work and studying and required further investigation. Previous struggles with inattention were heightened, one participant's comorbid ADHD reaching 'HECTIC' (P4, Q3) levels.

Negative emotions and stress reactivity

Participants reported an increase in anxiety and depression and the emergence of new mental health difficulties, such as panic attacks. The menopause brought on a lack of control over circumstances and emotions ('I really couldn't control my emotions-quite embarrassing sometimes' (P5, Q3)), which might be more extreme, labile, and which could emerge explosively in meltdowns:

Violence, self-injury, all these negative things which people associate with autism. Loss of speech at times - NOT selective mutism. Writhing and grimacing. Hitting head. Sitting in corner rocking. (P4, Q3)

With the decline in mental health associated with the menopause, several participants mentioned feeling suicidal:

I think that the extra stress all the above brings can result in feeling too tired and overwhelmed to carry on . . . It's like, your everyday life, just to appear 'normal' is bad enough, but when M [the menopause] happens, it all gets too much . . . I wonder if the low life expectancy for autistic women is linked to menopause because it all gets too much. (P6, Q4)

Midlife identity and life after menopause

The menopause appeared as one aspect of a midlife period already in flux. While enduring menopausal changes, autistic people might also navigate the reduction or reshaping of support networks ('Losing partners, kids moving out etc and menopause all at the same time . . . losing parents too' (P5, Q4)), changes to pre-existent chronic conditions and future health concerns. There was some suggestion that post-menopausal life might improve, though the extent of the improvement was mixed:

Being postmenopausal is grrrrrrrrrrrreat! (Except for not being able to achieve 25% of what I used to due to constant exhaustion and focus issues.). (P4, Q8)

Finding support

Our participants had experienced that support for changes related to the menopause was difficult to obtain. The discussion highlighted the gaps in present provision and the nature of the kind of support that might be suitable.

Two-way communication

This subtheme incorporated bidirectional communication between autistic people and their health practitioners. Autistic individuals might need support communicating their experience to clinicians, in line with the aforementioned communication, alexithymia and interoceptive difficulties. However, to optimize the kind of support that health providers can offer, participants emphasized that professionals should also hear their perspectives and experiences of autistic people as central to building a body of knowledge and support resources. Furthermore, participants highlighted the need for cross-disciplinary communication between professionals. They commented that doctors should be trained in systems medicine, and autism professionals schooled in biopsychosocial ap-proaches, highlighting the consequences of insufficient training ('if you don't understand a bit of biology, you are sooooo much less effective as a professional' (P4, Q7)). They also stressed that communication should be facilitated between autism researchers to resolve the silo situation among scientists, pointing out that 'the biomed guys and the psych guys don't seem to talk much' (P4, Q5).

Discussion

As a major transition point in the female reproductive lifespan, the menopause, with its physiological, cognitive and emotional changes, and elevated risk of physical and mental ill-health, poses substantial challenges for neurotypical women. The current analysis is the first of its kind to investigate the state of knowledge and the potential difficulties that autistic people might face during the menopause. We identified themes remarkably similar to those raised in one previous study around autistic perspectives on menstruation ( Steward et al., 2018). Our participants similarly suggested that the menopause might magnify and even generate new difficulties with sensory sensitivities, communication, emotion regulation and everyday living. Our participants also expressed difficulties 'identifying their own normal', given the lack of knowledge, interest and support from professionals. In important contrast, while efforts have been made to understand and help autistic people cope with menstruation, our focus group suggested that when seeking support for menopausal difficulties, their experience has been unreliable and challenged by a number of factors. While these initial findings are only sampled from a small group of autistic people, they suggest that empirical investigation of the menopausal transition is vital in building a knowledge base and much needed support in an ageing autistic population. The lack of professional expertise identified in our analysis, and eagerness for autism dogma to be challenged, also corroborates the importance of refocusing towards autistic involvement in order to drive progress in this area ( Fletcher-Watson et al., 2018).

In trying to understand how autistic people might experience the menopause, we noticed an element of duality in our analysis. Participants made reference to the exacerbation of autistic difficulties by the menopause, which 'cracked the mask' and amplified the visibility of their autism. Our participants, proactive seekers of information, may have been familiar with scientific interest in the camouflage skills of autistic adults, especially females ( Hull et al., 2017; Lai et al., 2016; Tierney et al., 2016), and with concerns around the cost of masking ( Cage & Troxell-Whitman, 2019; Cassidy et al., 2018). As extant masking and coping skills failed, two participants who were undiagnosed at the start of menopause explicitly linked their learning about their autism to the difficulty of this time. While the menopause appeared in some to heighten their autistic difficulties, the participants also recognized that self-identifying as autistic (regardless of a formal diagnosis) might be important for coping with the changes.

With reference to the heightening of autistic difficulties with the menopause, it is unfortunate that previous qualitative investigations with late-diagnosed autistic women (some aged 40 or above) do not explore the reasons that prompted their participants to seek diagnosis ( Bargiela et al., 2016; Jones et al., 2014; Kanfiszer et al., 2017; Leedham et al., 2019; Lewis, 2016a, 2016b; Milner et al., 2019). They do, however, reveal a multitude of emotions on receiving an autism diagnosis, including initial anxiety, anger or grief, but also vindication of their struggles, relief, even elation at finally understanding. Afterwards, many find it possible to connect with community, better manage sources of stress and reframe life events from a more self-compassionate perspective. Only one of our participants was diagnosed at the point of menopause, and the group discussion likewise suggested that unrecognized autism prevented some participants from finding peer support and information that could have helped, leaving them isolated without a frame of reference to understand their experience. The basic agency inherent in understanding oneself appeared to be fundamental for mental health ( Leedham et al., 2019). Although we did not ask our participants about their experiences of self-identifying/being diagnosed during the focus group, the data seemed to suggest that this self-knowledge was beneficial to being able to cope with the menopause and dispel concerns around mental health ('going nuts'). In some sense, in 'cracking the mask', menopause may help some people to a place of greater understanding and acceptance.

Our analysis also recognized the menopause as a time of immense change situated within a broader epoch, midlife, characterized by changing relationships and life circumstances. This instability would naturally be expected to pose greater challenges for autistic individuals ( Hirvikoski & Blomqvist, 2015; Mazefsky et al., 2013). Our participants spoke of 'losing their supports', making the need to investigate the menopause within the broader context of ageing ever more palpable.

That mental health issues and suicidal ideation seemed to be exacerbated is unsurprising, given the difficulties and overall instability during midlife. This is concerning given the already high rates of psychiatric illness and suicidality in the autistic population ( Cassidy et al., 2018; Lai et al., 2019). Our analysis suggests that there are unmet health needs for autistic people experiencing the menopause, though the data also reflected the diversity of individuals in different geographic locations and, even within the UK, under different local health services. Summary statements about autistic access to healthcare must contend with huge variation nationally and internationally. This aside, our participants' negative encounters with health professionals are consistent with literature purporting that autistic people have difficulty accessing healthcare ( Crane et al., 2019; Mason et al., 2019), and that health professionals feel that they lack training, knowledge and confidence in treating patients with potentially complex needs ( Morris et al., 2019). Some of the barriers we identified around seeking information and support for the menopause - isolation, difficulties with communication and expression, including alexithymia - are among those identified by recent reviews in autism ( Bradshaw et al., 2019; Mason et al., 2019). Some of the recommendations raised by these authors, such as the 'Know Your Normal' toolkit, might be highly appropriate when it comes to gynaecological health around menopause. So too would the recommendations of Steward et al. (2018) around supporting younger people through menstruation: making 'sciency' information accessible, outlining what to expect and giving practical advice, with incorporation of autistic perspectives in the development of such resources.

Limitations and future directions

Where validity and reliability are upheld in quantitative science, qualitative research strives for credibility, dependability, confirmability and transferability ( Anney, 2014; Schwandt et al., 2007). We have striven for a sound and rigorous analytic process by providing thick description for the purpose of replication and complying with recommendations to uphold the credibility and dependability of our interpretation ( Anney, 2014). Our aim, in this first, participatory form of research, was to inform future academic approaches to autistic stakeholders. We believe the insights from our group are of much importance in opening up this neglected area, but they cannot be generalized to all biologically female autistic people. Further research of a multifaceted, qualitative and quantitative nature is required to characterize the menopausal transition and the challenges it poses for this group.

As succinctly phrased by one of our participants, 'It's really important that any research has as its focus improving the lives of autistic women' (P1). Support and resources, however, have their roots in understanding, which is presently lacking in this entirely nascent field. Participants requested that research explore 'changes in physiology, hormones, communication, sensory issues, cognitive function, moods, suicide ideation or actual suicide' (P7). In-depth scrutiny of individual experiences would be important and could be achieved via interpretative phenomenological analysis (IPA). However, this question would also necessitate a quantitative battery of tests, in a longitudinal or cross-sectional approach, which might chart these differences between younger and older autistic women. Within such an approach, it would further be important to identify physical and psychological moderators of the menopausal experience, such as have been documented in non-autistic women ( Deeks, 2003; Duffy et al., 2013; Pérez-López et al., 2014). Another key question posed by participants involved identifying the differences between the menopausal experiences of autistic and non-autistic people.

Where some studies in non-autistic people have attempted to link menopausal symptoms (or their severity) to physiological indices of steroid hormones ( Bromberger et al., 2010; Freeman et al., 2006; Randolph et al., 2005; Woods et al., 2014), we made no attempt, here, to identify the hormonal status of our participants. This was beyond our aims in this pilot study, but the problematic implications of relying purely on symptom reporting are several. First, in non-autistic women, menopausal symptoms change across the transition period ( Koebele et al., 2017; Woods & Mitchell, 2016). If the same is true for autistic people, then comparison of menopausal groups (whether with younger autistic people or non-autistic people) may be obfuscated by individual differences in transition stage. In being unable to confirm whether symptoms are indeed associated with changing androgens, it is impossible to differentiate which symptoms or difficulties are related specifically to menopause and which are a function of ageing (its biological and psychosocial components) more generally - this is certainly true of qualitative studies such as this. We were cautious to avoid screening participants for well-known (non-autistic) menopausal symptoms. It is possible that differences in menopause symptom presentation (presently unknown to us) could introduce a sampling bias if autistic participants with non-normative symptoms are turned away, but without means of ascertaining whether participants really are entering the menopausal transition, this hinders tight experimental control over sampling. Problematically, steroid hormones require measurement through expensive and invasive means (e.g. as measured in urine, blood serum or plasma). For all this trouble, these methods still lack standardization, accuracy and precision ( Ceglarek et al., 2010; Rosner et al., 2013; Stanczyk & Clarke, 2014; Wang et al., 2016), so optimal means of studying menopause in autism require further thought and discussion. Some studies have linked menopausal symptoms and distress to cortisol, adrenaline and noradrenaline, associated with the HPA axis and the autonomic nervous system, respectively ( Gerber et al., 2017; Reed et al., 2016; Woods et al., 2014). Cortisol levels are robustly related with mental and physical health outcomes ( Adam et al., 2017), so this may also be a worthy physiological index to compare between groups and examine alongside symptom-reporting, given that (a) physical and mental health often decrease with menopause in the non-autistic population ( Hoyt & Falconi, 2015), and (b) autistic people are already vulnerable to increased morbidity and mortality ( Croen et al., 2015; Hirvikoski et al., 2016). Determining whether biologically female autistic people are more vulnerable to physical and mental illness at this time of life, and the biochemical mechanism of this vulnerability, would be an important research goal. The importance and impact of other factors on health and well-being, such as autistic-identity and awareness, access to healthcare and social support, would also pave the way towards understanding where interventions are needed.

Several methodological limitations must be borne in mind when interpreting our findings. By advertising on social media groups where autistic people socialized and supported one another, we introduced a selection bias where only those who were comfortable with online communication saw and responded to the advertisement. The advertisement may not have been visible to those with literacy problems, or who have difficulty typing or with technology. Though we attempted to advertise in a neutrally valanced way, the study may have been most salient to individuals who had experienced a particularly difficult menopause. Moreover, in being immersed in the online autism community, our participants were highly knowledgeable about autism, autism research, and were science-minded - the quintessential 'expert patients' ( Department of Health, 1999). Knowing autism from the inside gave them a valuable perspective in a preliminary imagining of where the menopause might raise difficulties for autistic people, but they may have been unlikely representatives of the autistic community as a whole. Autistic people who are minimally verbal with ID tend to be a forgotten group ( Tager-Flusberg et al., 2017) who were certainly not included in our sample. Although our participants were considerate of the extra difficulties this population might face with the menopause, the experiences of these groups require specific examination. It is also important to note that although all of our participants would be classified as post-menopausal on the basis of not menstruating for (at least) a 12-month period, there was a huge range in the length of time since participants experienced their last menstrual period. Participant 6, 49 years old, for instance, estimated that they had experienced menopausal symptoms 2 years ago when aged 47, but for participants 1, 3 and 7, a period of more than 10 years had passed since they experienced their last menstrual period. Other researchers have warned of the unreliability of retrospective reporting of menopausal symptoms ( Taffe & Dennerstein, 2000), and it is certainly possible that recall bias affected a large proportion of the participants in our study, who were recalling experiences from a more distant point in time.

The Internet is an excellent medium for reaching specialist or clinical groups, especially when they are geographically remote, and our approach likely suited the needs of our participants while allowing them to speak frankly in the safety of anonymity. The concern that participants in a fast-moving, chaotic chat room will keep their responses brief has not been supported in previous non-autistic studies ( Woodyatt et al., 2016), but online studies are characterized by greater perceived (and actual) distance between researcher and participant that can affect their rapport. Lacking non-verbal cues, researchers can struggle to monitor the emotional impact of the discussion on individual participants, and misunderstanding can occur ( Bouchard, 2016; Mann & Stewart, 2000; Reisner et al., 2018; Wilkerson et al., 2014), as was the case for one of our participants who dropped out. There was furthermore no opportunity to observe spontaneous responses to our questions. Future research would benefit from closer contact between researchers and participants that would allow for scrutiny of subtle social or emotional cues in our participants ( Markham, 2004). It might also reduce the problem that participants in group discussions such as this do not all contribute equally, as is clearly evident here. We did not want to put any of our participants 'on the spot', so we did not seek or demand contributions to each question. Working with people individually would reduce this problem, and forthcoming work from our group does attempt to represent the voices of our quieter participants by hearing their stories.

With the inclusion of individuals without formal autism diagnoses, we followed recent practice and convincing arguments from within the academic community ( Au-Yeung et al., 2019; Lewis, 2016a; Milner et al., 2019). As female autism has only recently been better understood by professionals and the public, there are likely many older women who have never been diagnosed, especially given the accessibility barriers in place ( Lewis, 2017) and the sex-bias in primary healthcare screening tools and 'gold standard' diagnostic measures ( Gould, 2017; Lundin et al., 2019; Moseley et al., 2018; Murray et al., 2017, 2019). Until our ability to identify female autism improves, it may be important for studies of ageing autistic people to include those who have self-identified. Despite their limitations, autism assessment tools (such as the Autism Diagnostic Observation Schedule (ADOS)) afford rich data. Until superior diagnostic tools are in common use for autistic girls and women, future research might therefore benefit from conducting extent assessments on self-identifying and diagnosed participants to assure as much homogeneity within autistic samples as possible, and to allow for relationships to be drawn between autistic features and menopausal changes.

Conclusion

Our focus group suggested that the menopausal transition may be a time of heightened vulnerability for autistic people. The lack of knowledge around the menopause in autism should, we suggest, be of high concern, particularly given the suggested increase in mental ill-health and suicidal thoughts. Furthermore, the potential exacerbation of social difficulties could thwart communication with health providers at a most vital time. Support needs of the ageing autistic population are currently unmet, and should be a vital goal for future research.

Supplemental Material

AUT901184_Supplemental_material - Supplemental material for 'When my autism broke': A qualitative study spotlighting autistic voices on menopause:
Supplemental material, AUT901184_Supplemental_material for 'When my autism broke': A qualitative study spotlighting autistic voices on menopause by Rachel L Moseley, Tanya Druce and Julie M Turner-Cobb in Autism

Acknowledgments

We would like to acknowledge, first and foremost, the generous and brave participants who gave us their time. We are immensely grateful for your efforts in helping us raise awareness of this area. We would furthermore like to thank our colleagues who assisted with questions about our analytic approach.

Notes

1.Menopause is not a singular event, but a gradual transition through decreasing fertility to complete termination of menses. Terminology differs across countries, but we comply with popular British usage ( National Institute of Health and Care Excellence (NICE), 2015), where a person has reached or passed through the menopause, or is post-menopausal, at the point of having 12 consecutive months free from periods. We refer to the symptomatic time before this point as (the) perimenopause, when reproductive hormones are dysregulated but the individual has not experienced 12 months free of periods. We refer to the menopausal transition or the menopause to describe the entirety of this reproductive transition point (perimenopause to being post-menopausal). We refer to menopausal symptoms to describe symptoms that can occur during the perimenopausal period and/or after menopause has been reached.

2.With the term 'women' or 'woman', we refer to those individuals whose biological sex was assigned as female at birth, disregarding the distinct aspect of gender identity. As it is common for autistic people to be gender non-conforming ( George & Stokes, 2017; Glidden et al., 2016; Strang et al., 2014; Van Der Miesen et al., 2016; van Schalkwyk et al., 2015), here and thereafter, we use the gender-neutral term 'people' so that we make no assumptions about whether these individuals identify as female, male, non-binary or other.

Footnotes

Declaration of conflicting interests: The author(s) declared no potential conflicts of interest with respect to the research, authorship and/or publication of this article.

Ethics: The study was approved by the Bournemouth University Research Ethics Committee. As described above, the design of the study aimed to facilitate convenience and comfort of participants, as well as ensuring confidentiality, anonymity and safety.

Funding: The author(s) disclosed receipt of the following financial support for the research, authorship and/or publication of this article: The work was supported by internal postgraduate research funds from Bournemouth University.

ORCID iD: Rachel L Moseley https://orcid.org/0000-0002-5985-6175

Supplemental material: Supplemental material for this article is available online.

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# data[].attributes.attachment_link.title
'When my autism broke': A qualitative study spotlighting autistic voices on menopause

# data[].attributes.attachment_link.description
Autism. 2020 Aug; 24(6): 1423-1437. Autistic women often struggle with the onset of menstruation, a key transition point in the female reproductive lifespan. Presently, there is no research investigating how autistic people navigate the menopausal transition, and whether it poses additional challenges in addition to those already faced by neurotypical women.

# data[].attributes.headline
"I'm Proud to be a Little Bit Different": The Effects of Autistic Individuals' Perceptions of Autism and Autism Social Identity on Their Collective Self-esteem

# data[].attributes.subject
"I'm Proud to be a Little Bit Different": The Effects of Autistic Individuals' Perceptions of Autism and Autism Social Identity on Their Collective Self-esteem

# data[].attributes.body
Rosalind Cooper, et al.

# data[].attributes.attachment_link.readable_text
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. 2021 Feb;51(2):704-714.

doi: 10.1007/s10803-020-04575-4.

Affiliations

¹ Department of Psychology, University of Bath, Claverton Down, Bath, BA2 7AY, UK.

² Department of Psychology, University of Bath, Claverton Down, Bath, BA2 7AY, UK. k.cooper@bath.ac.uk.

Free PMC article

Rosalind Cooper et al. J Autism Dev Disord.

Free PMC article

. 2021 Feb;51(2):704-714.

doi: 10.1007/s10803-020-04575-4.

Affiliations

¹ Department of Psychology, University of Bath, Claverton Down, Bath, BA2 7AY, UK.

² Department of Psychology, University of Bath, Claverton Down, Bath, BA2 7AY, UK. k.cooper@bath.ac.uk.

Abstract

This study aimed to identify the attributes that autistic people perceive as positively and negatively impacting on their identity and wellbeing. In Study 1, we recruited 140 autistic participants for an online survey. Participants completed autism social identification and collective self-esteem measures and listed attributes they associated with autism. In Study 2, we conducted focus groups with 15 autistic people to explore how positively they perceived the attributes of autism. Participants then discussed the autism attributes in relation to their own experiences and identity. We found a positive relationship between the number of positive attributes participants associated with autism, and their collective self-esteem, to the extent that they identified with other autistic people.

Keywords: Autism community; Autism spectrum disorders; Autism strengths; Self-esteem; Social identity.

Figures

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national center for biotechnology information

# data[].attributes.attachment_link.title
"I'm Proud to be a Little Bit Different": The Effects of Autistic Individuals' Perceptions of Autism and Autism Social Identity on Their Collective Self-esteem - PubMed

# data[].attributes.attachment_link.description
This study aimed to identify the attributes that autistic people perceive as positively and negatively impacting on their identity and wellbeing. In Study 1, we recruited 140 autistic participants for an online survey. Participants completed autism social identification and collective self-esteem me ...

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Autism Through the Ages: A Mixed Methods Approach to Understanding How Age and Age of Diagnosis Affect Quality of Life

# data[].attributes.subject
Autism Through the Ages: A Mixed Methods Approach to Understanding How Age and Age of Diagnosis Affect Quality of Life

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Gray Atherton et al

‘In Study 2 we explored the experiences of 8 autistic adults diagnosed as adults. We found that autistic adults had lower quality of life outcomes and higher autistic trait levels which related to age of diagnosis, and qualitative findings indicated that while adults were empowered by their new diagnosis, they still require specialized supports. Our findings are discussed, emphasizing future directions and implications for the current care system in place for autistic adults.’

https://link.springer.com/article/10.1007/s10803-021-05235-x

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Study 1 Methods

Participants

Four hundred and twenty people took part in this study recruited via Prolific (Oxford, UK). We recruited 210 TD individuals (118 females and 92 males; mean age = 34.13, SD = 13.45) and 210 individuals with Autism Spectrum Condition (ASC) (108 females and 102 males; mean age = 29.03, SD = 10.53). Participants were paid in line with UK minimum wage for time spent filling out the survey, which took on average 30 min. The ethics committee granted ethical approval for this study at Edge Hill University. Each participant gave consent to participate in this research.

Design, Materials & Procedure

First, participants reported whether they had a diagnosis of autism. If yes, they were then asked whether this diagnosis was given to them by a medical professional and at what age they received the diagnosis. The ability to provide this information is highly correlated with the actual existence of diagnosis (Daniels et al., 2012). It has been used in similar online studies of autistic adults to confirm diagnoses (Baron-Cohen et al., 2015). Next, participant demographic information was recorded, followed by several self-report questions measuring aspects of QoL.

Specifically, participants completed the UCLA Loneliness scale (UCLA-LS, Russell et al., 1980), a 20 item measure scored on a 4-point Likert scale measuring subjective feelings of loneliness and social isolation (i.e. 'I cannot tolerate being so alone', 'I feel left out'). followed by the Liebowitz Social Anxiety Scale (LSAS, Liebowitz, 1987), a 24 item measure in which participants rank their respective anxiety and avoidance of certain social behaviors (i.e. 'Telephoning in public'; 'Meeting strangers') on a 4-point Likert scale. The next measure was the Multidimensional Scale of Perceived Social Support (MSPSS, Zimet et al., 1988), a 12 item scale measured on a 7-point Likert that rates a person's relationships with family, friends and significant others (i.e. 'my family really tries to help me'; 'There is a special person who is around when I am in need'). Followed by the Satisfaction with Life Scale (SLS, Diener et al., 1985), a 5 item measure rated on a 7-point Likert, which asks people to rate their overall contentedness with their life (i.e. 'In most ways my life is close to my ideal').

Finally, participants completed the Autism Quotient (AQ) (Baron-Cohen et al., 2001) to measure autistic traits. In the AQ, participants reported their agreement with 50 statements indicating autistic traits (i.e., 'I prefer going to the library than a party') using a 4-point Likert scale. The entire Likert scale was used to form AQ scores rather than the Baron-Cohen et al. ( 2001) original dichotomous response method. Using this method of scoring increases possible max scores from 50 to 200. Likert scoring the AQ has been shown to more adequately retain the detail in responses, increase the variability in scores and increase the overall reliability and validity of the measure (Stevenson & Hart, 2017). Research on the AQ using the Likert scoring system suggests that the middle 50% of the reported mean scores range from 102.42 to 108.10 (Stevenson & Hart, 2017). The dichotomous scoring method was also used to identify and exclude anyone in the TD sample who possesses a clinical level of autistic traits (this is defined as anyone scoring above 31, Baron-Cohen et al., 2001). This was done to account for the possibility that someone with autism who was undiagnosed ended up in our TD group. Essentially the dichotomous score allowed us to identify anyone without a known autism diagnosis but who displayed traits at or above the clinical level in order to exclude them from the TD group. For all other results the total of the full continuous Likert scale was used which gives a score of 50-200.

Data Analysis

Four subjects were not included from the original 420 participants because they did not reach the end of the online questionnaire. Additionally, 17 individuals from the TD group who had dichotomous AQ scores in the clinical range were also excluded. The analyses reported here refer to the remaining 399 participants (191 = TD, 208 = ASC).

Following the standard scoring procedures, we calculated a (i) Loneliness score from the UCLA-LS, a (ii) Social Anxiety score and a (iii) Social Avoidance score from LSAS, a (iv) Social Support score from MSPSS, and a (v) Life Satisfaction score from SLS. Reliability analysis was conducted between these five scores to test the possibility of combining them into a single Quality of Life measure (QoL). First, the Loneliness, Social Anxiety and Social Avoidance scores were reversed by subtracting each participant's score from the maximum possible score. In this way, a higher score was associated with a higher quality of life on all measures; a higher score was associated with lower loneliness, social anxiety and avoidance, and higher social support and life satisfaction. The five measures were all highly intercorrelated (all r ss > .30 and p s < .0001), and Cronbach's alpha showed the five measures to reach acceptable reliability, α = 0.81.

This QoL score was calculated for each participant as follows; z scores were calculated for Social Support, Life Satisfaction and the reversed Loneliness, Social Anxiety and Social Avoidance. The five z scores were then averaged, and the result was the combined QoL score used in the following analyses. Participants scored between − 1.95 and 1.59, with a higher score indicating a higher quality of life. QoL highly correlated with the original five measures (all r ss > .72 and p s < .0001), and a Cronbach's alpha including the five measures and QoL reached acceptable reliability, α = 0.83. Analysis of the QoL composite score was consistent with analyzing the five scores separately, which can be found in the Supplementary Materials, along with further details for all measure checks.

Study 1 Results

Table 1 shows descriptive's for age, age of diagnosis, AQ and QoL divided between ASC and TD and by sex. All variables except QoL were abnormally distributed as indicated by the Kolmogorov Smirnov tests reported in Table 1. Non-parametric statistical tests were therefore used where available.

Descriptive statistics suggested that females (191 = TD, 208 = ASC) were diagnosed with autism later than males, which was confirmed with a Mann Whitney U test (U(N male = 101, N female = 107) = 7390.00, z = 4.58, p < .001). Inspection of Table 1 also suggested that women were more likely to be diagnosed with autism in adulthood (18+ years), while men were more likely to be diagnosed with autism in childhood (< 18 years). We tested this possibility by dividing both autistic males and females into groups based on whether they were diagnosed before or after 18 (Table 2). A Pearson's Chi-Square was then conducted to assess the association between sex and age of diagnosis. There was a significant association between sex and age of diagnosis ( χ 2(1) = 12.24, p  < .001); men were indeed more likely to be diagnosed with autism during childhood, while women were more likely to be diagnosed during adulthood.

We explored the effect of diagnosis and sex on AQ and QoL. A two-way ANOVA was conducted with diagnosis (ASC and TD) and sex (male and female) as a between-subjects factor (the F-test is robust to violations of normality in terms of Type I error Blanca et al., 2017; Schminder et al., 2010). As it is possible to see from the coefficients of the ANOVAs reported on Table 3, there was no significant main effect of sex on AQ, but there was a significant main effect of diagnosis on AQ. Post-hoc tests showed that AQ scores were significantly higher in the ASC group than in the TD group. There was also a significant interaction effect between diagnosis and sex on inspection of Fig. 1. Mann Whitney U tests reported in Table 3 indicated that females had higher AQ scores in the ASC group and lower AQ scores in the TD group compared to males. There was a significant main effect of diagnosis on QoL, and post-hoc tests showed that QoL scores were significantly lower in the ASC group than in the TD. However, there was no significant main effect of sex on QoL, and there was no significant interaction between diagnosis and sex on QoL.

AQ scores of participants divided between ASC and TD and by sex

In summary, ASC individuals had higher autistic traits and lower quality of life compared to TD individuals. Furthermore, autistic women had higher levels of autistic traits compared to autistic men, while the opposite trend was found among TD males and females. Finally, men and women did not have significantly different QoL scores.

Two-tailed Spearman's correlations were conducted to explore whether participants' age was related to AQ and QoL. Correlations were performed separately for those with a diagnosis of ASC and TDs to test whether older participants in both the ASC and TD groups reported a higher quality of life (see Table 3 for Spearman's coefficients and Fig. 2, panels A-D). In the TD group, there was a significant negative correlation between age and AQ and a significant positive correlation between age and QoL. In contrast, there was a significant positive correlation between age and AQ in the ASC group and no significant relationship between age and QoL. This suggested that while ageing was related to lower autistic traits and higher quality of life in typically developed people, ageing was related to higher autistic traits but not the quality of life for autistic people. Within the ASC group, two-tailed Spearman's correlations were also performed to explore whether the age of diagnosis was related to AQ and QoL (see Table 3 and Fig. 2, panels E and F). There was a significant positive correlation between diagnosis age and AQ and a significant negative correlation between diagnosis age and QoL. The findings suggested that, although the age of autistic people was not related to their quality of life, their diagnostic age was, with a later diagnosis associated with a poorer quality of life.

Scatter plots showing the relationship between age, AQ and QoL Scores in the TD Group (Top Panels) and in the ASC Group (Middle Panels), and the relationship between age of diagnosis, AQ and QoL scores in the ASC group (Bottom Panels). Panel A Relationship between age and AQ scores in the TD group. Panel B Relationship between age and QoL scores in the TD group. Panel C Relationship between age and AQ scores in the ASC group. Panel D Relationship between age and QoL scores in the ASC group. Panel E Relationship between age of diagnosis and AQ scores in the ASC group. Panel F Relationship between age of diagnosis and QoL scores in the ASC group

Study 1 Discussion

Study 1 suggested that autistic adults experience lower QoL than TDs, as has been found by other studies (McDonald, 2020; van Heijst & Geurts, 2015). However, in contrast to other research (van Heijst & Geurts, 2015), autistic adults in our study were found to have a different developmental trajectory than TDs regarding age and its relation to QoL outcomes. While van Heijst and Geurts ( 2015) found that older adults with and without ASC had similar quality of life patterns over the lifespan, our study suggests that autistic and TD adults follow different QoL trajectories.

While TD samples showed higher QoL scores and lower autistic traits commensurate with higher age, this pattern did not hold for autistic participants. Our autistic sample had higher AQ scores commensurate with age, calling into question whether autistic symptomology does indeed 'improve' over the lifespan. We hypothesized that the age of diagnosis played a critical role, and delays in receiving a diagnosis would have adverse effects on the social development of autistic adults across the lifespan. In line with our hypothesis, age of diagnosis was an essential factor for explaining QoL. Specifically, age of diagnosis correlated with increased social anxiety, social avoidance, and a lack of social support. Furthermore, the older their age, the higher their AQ score in our autistic sample, while the reverse was true for TDs. This finding calls into question whether those diagnosed later in life have subtler autistic symptoms, as elevated AQ scores in this subset of the sample suggest the opposite.

As predicted, the age of diagnosis was significantly related to QoL; adults diagnosed earlier in life had better QoL outcomes, while those diagnosed later had poorer outcomes. Thus, it appears that early identification and diagnosis of autism may be critical to the social success and mental health of autistic adults. This has been suggested by previous qualitative research in which adults following diagnosis express relief, improved social strategies, self-acceptance, and a formation of an autistic identity helped by connection to autistic peers (for a review, see (Huang et al., 2020).

Gender also played a critical role with regards to participant experiences. Similar to other studies, we found that males received a diagnosis of autism several years earlier than females (Krahn & Fenton, 2012), putting females at a greater risk of remaining undiagnosed and ineligible for clinical support (Dworzynski et al., 2012). While both males and females mask symptoms, females may engage in more compensatory masking (Wood-Downie et al., 2021), though other studies do not find an effect of gender (Livingston et al., 2020). Future work will want to investigate how gender affects missed diagnoses for women. Hull et al. ( 2020) note that there may be a specific female autistic phenotype that current diagnostic procedures are not tuned to recognizing, as they are based predominantly on male populations and symptom presentation. Autistic females may, for instance, have restricted interests that are not initially recognized as 'autistic' in that they are more conventional (such as interest in fictional characters or animals) (Grove et al., 2018).

It is clear from the pattern of results that autistic adults are continuing to face challenges across the lifespan compared to TDs, and that age of diagnosis plays a role in this disparity. Poorer outcomes for adults who were diagnosed later in life are in many ways a rebuke of the idea that those who are not identified early in life may be individuals with less severe symptoms. In our sample, people who were diagnosed later had higher self-reported traits and poorer outcomes. This instead suggests that autistic people late to receive a diagnosis may not necessarily be presenting differently, but that there may be structural inequalities that limit their ability to obtain an early diagnosis, such as culture, gender, ethnicity or socioeconomic status, all of which can contribute to a delayed diagnosis (Mazurek et al., 2019). Continuing to understand how an autism diagnosis can be missed, including implicit biases that lead to underdiagnosed groups, and how to improve access to diagnostic and therapeutic services, perhaps through the initial use of self-report measures like the AQ, would be an important area of continued work. In light of this, Study 2 is a qualitative study in which we interviewed eight autistic adults, all of whom were diagnosed later in life, to understand better the unique challenges those with a late diagnosis face.

Study 2 Methods

To further understand the lived experiences of autistic adults with a late diagnosis, we undertook a qualitative investigation. Using a semi-structured interview format, one researcher interviewed eight autistic adults (4 males, 4 females) about their late-stage diagnosis experiences. These eight participants were recruited from Study 1. Specifically, participants who received an diagnosis over the age of 18 were emailed asking if they would like to participate in an interview about their experiences receiving a diagnosis of autism in adulthood. All of those who agreed to be interviewed within the 2-week time frame of data collection were interviewed. Please see Table 4 for participant demographics. All interviews were conducted over the phone/online communication platforms and lasted on average 1 h. Our interview protocol can be found in supplementary materials. All interviewees were compensated £10. The ethics committee granted ethical approval for this study at Edge Hill University. Each participant gave consent to participate in this research and for their quotes to be used. Additionally each participant was invited to review and comment on qualitative analysis and exclude any quotes as part of a member check pre-publication.

Study 2 Results

When providing interview extracts, the following textual conventions are used:

Words omitted to shorten quote: ...

Explanatory information provided by authors: [text].

Theme 1-Barriers to a Diagnosis

As autism is a condition that must be present in childhood, it was of interest to understand more about the childhood experiences of autistic adults who are not diagnosed until later in life and understand why a diagnosis was missed in childhood. The most common reason participants believed they were not recipients of a diagnosis earlier in life was their high achievement. Almost every participant explicitly reported that their academic achievements and social successes were a barrier to receiving a diagnosis. As such, participants recounted that parents and professionals were unsure as to whether a diagnosis was indeed helpful or appropriate for a child they saw as successful in school.

My dad, he thought, what benefit would it bring? Because you ultimately weren't developing like you were handicapped, you weren't held back, you were actually excelling in school and whatnot. You were constantly bringing friends home and you were excelling. So what benefit would you say it is?

Many believed that when they were children there was a poor understanding of the autism spectrum, and it only included those with high functional needs. As a result, parents were concerned that having their child receive a diagnosis could discount their academic achievements and possibly put them at a disadvantage when furthering their education and professional development. Much of this was related to the fact that autistic people were understood to present in a certain way, and the participants had different presentations that made this autistic stereotype not relevant or a close match to the way they presented in everyday life. For instance, some female participants discussed being perceived as shy, which was perhaps more acceptable for females and hid their autistic characteristics. Another discussed how her female presentation of autism, which looked very different from her father's, served as a barrier to getting a diagnosis.

I remember for me personally, one of the things that took me so long to get an assessment was people would say to me, 'How do you have such a good understanding of autism when you're on the spectrum? It doesn't make sense because of this theory of mind, because you're not supposed to have empathy and understand other people's perspectives. How do you go about it? How can you possibly understand what it's like to have autism if you're saying you're autistic?' And I could never understand that myself.

This is a pertinent example of how strengths, such as academic ability and social skill, served as barriers for identification and treatment. It also highlights how commonly held stereotypes can directly impede identification.

For many, the lengthy process of receiving a diagnosis from a professional was a barrier in and of itself. Some expressed that multiple professionals assessed them over many months, which was emotionally draining:

For me, it was a psychological kind of torment because it was 25 years of feeling like an alien boiling down to one moment of him and his team or whoever he's working with, effectively saying, yes, I'm insane or I'm not. And I felt it was that constant pressure. And if they say no, there's actually no evidence to suggest it here, I almost fall back to square one ... it was psychologically draining just because it was so much boiling down to what, one day.

Some participants opted for a private service so that they would be able to eliminate the long wait lists, and because they knew that they presented in ways that contradicted certain autistic stereotypes:

I didn't want to waste time, you know, life's too short. Yeah, I'm getting old. I didn't want to waste time or hassle with the NHS because, you know, I've done a lot of living. I speak neurotypical fluently. I don't look autistic. They'll say 'Well, you went to a mainstream school, you got two degrees. You're in employment, in fact, successfully self employed. Come on. Why waste time on you.'

While participants understood that services were stretched, for most, the fact that they had to not only wait for a diagnosis but repeatedly undergo testing that they feared may contradict the understanding they had come to regarding their diagnosis, was itself a barrier with significant mental health costs. In many ways, this stemmed again from the misperceptions of autistic people that extended into adulthood and the idea that an autistic adult who had a certain level of success may not equally be autistic.

Theme 2-Negatives of a Non-diagnosis

While the participants described aspects of their childhood selves that were 'successful' and thus made their autistic traits less congruent with their outward-facing selves, they also described painful experiences that negatively affected their sense of self. While a few participants discussed the sensory challenges of the condition, for most, the social miscommunications were both the most indicative of autism in childhood and caused them the most issues throughout their lifespan. Many used the metaphor of feeling like an alien or foreigner, such as speaking a different language or feeling transplanted from a different world. As one participant explained, having to assimilate as an autistic person meant repressing one's native language. As she put it, 'I speak neurotypical because I live in neurotypical land ... I've lived in the neurotypical country for 60 years yet.' Feeling alien was a reflection of the fact that other people were constantly sending participants the message that they were odd, different and hard to understand. As one explained:

The biggest memories I have is starting in primary school and literally being on the playground and feeling like I was on an alien planet. I couldn't understand these children and I didn't understand how to interact with them, and everything they did was like a foreign language. And it was so hard. And nothing I did was ever right.

Sensitive to the adverse reactions they often received due to their socio-communicative differences, participants often camouflaged or masked their autistic traits. Camouflaging not only compounded anxiety that they were not normal, but it was exhausting. Many explicitly focused on the need to mask to be successful in what was considered the highest stake settings, professional settings or interacting with strangers.

Everyone I know, everyone acts more professional in front of important people than they traditionally would. I guess what I'm saying is, it's a whole different, whole other level ... I also think, well, when that camouflage happens so often to the point where you're not thinking about it, well, that is surely part of your personality as well. And in many ways, that is now my personality.

In this way, masking led to a fragmented sense of self. As one participant explained, 'I've always found a lot of contradictions in myself, I've never really been fully resolved. Masking is one of them, so I can be gregarious and yet not enjoy the process at the same time.' In this sense, living without a diagnosis did not provide the justification participants needed to explain their social experiences and how their differences made them no less of a person than anyone else. Instead, a missed diagnosis heightened their need to take on neurotypical characteristics as they had no other identity they could present to the outside world. For some, masking led to severe self-harm behaviours, addiction and mental health conditions, such as anxiety and depression. It led to decreased self-esteem for all participants as they found themselves pretending to be someone they were not.

Theme 3-Benefits of a Diagnosis

While participants struggled for years to understand why certain social situations were challenging, the ability to understand themselves as autistic for the first time as an adult after gaining a diagnosis was unanimously viewed as a life-changing, revelatory experience. Participants used several metaphors to describe how receiving a diagnosis changed their lives, illustrating how life without a diagnosis was a life without all the right pieces of the puzzle, the language, or the manual that a diagnosis now provided.

For me, it's not a label. It's a signpost. And it points to the help you need and how to look at things a different way and embrace that as a strength.

More than anything, a diagnosis was empowering as it demystified their social differences, providing a logical, scientific explanation for their experiences. Some discussed this in terms of neurology and an understanding that they are wired differently. Having the ability to learn about the condition and speak to other autistic people further enhanced their understanding of their status as 'autistic'. They were able to explore how they were similar to other autistic people rather than simply different from most people. Some of the power that came with a diagnosis was that it allowed for compassion, both for themselves and from other people:

It was a bit like if you don't have a diagnosis or something, it kind of feels like they're out to get to you. Instead of trying to be positive, they're like, 'Why aren't you doing this?' And now there's less of that. And it's more like they understand that OK, I have a diagnosis, and I have a disability. And that I'm not OK with work and stuff like that. So I would say it's less stressful.

One of the most significant forms of support that a diagnosis afforded for several participants was access to counselling. Many argued that counselling is essential for autistic people who journey to a diagnosis as adults. The benefits of counselling were two-pronged. For one, they were objective, which meant that participants were no longer relying on opinions of family or anecdotal information from people in the autistic community, which some felt marred their judgement in terms of understanding how the condition affected their life. As one participant put it, 'A professional who comes completely objectively and tells you, 'you have autism' has no agenda.' Second, speaking to a professional allowed them to be guided through their autistic journey rather than having to do this exploration entirely on their own. Almost all participants reiterated the need for more mental health supports for autistic people, specifically through counselling.

Theme 4-Two Sides to a Diagnosis

Taking on an autistic identity was not always easy or positive, particularly as participants had arrived at the point of seeking diagnosis through the somewhat painful process of recognising how they were different from others. While the diagnosis was often helpful, getting to the point that they needed the diagnosis, such as through increased sensory issues, meltdowns, and frank conversations with parents or partners about being 'atypical,' was not easy. For some, the process of having to recognize things in their past that were markers of autism were challenging. One participant described being diagnosed as:

Very hard, very, very hard because you have to go in there honest with the fact that your whole history, big parts of it were a lie ... And there's these glaring issues and you see how multiple times you were failed by various professionals that should have and could have seen issues and probably felt a little bit but didn't.

While understanding the self as autistic was often helpful, it did not mean that participants were completely comfortable with their new identity. Some were afraid that they would become complacent or make excuses for themselves due to a diagnosis. For some, this meant that in retrospect, they were pleased that they hadn't received a diagnosis earlier as they felt it would have limited their full potential. As one participant expressed, they believed that children who receive an early diagnosis may 'now not got the strength and experience to overcome issues because previously all the issues were taken away by everybody that thinks they're helping, but really are disabling them.'

Taking on an autistic identity also meant having to navigate disclosure, which almost all participants found stressful. This largely stemmed from an understanding that autism remains for many a misunderstood, often stigmatized condition. One participant voiced his hesitation in sharing his condition with others, remarking that 'You know, it's cruel world when you go for a job. I mean, I work for a housing charity and with the most liberal minded as it gets, but I'm still nervous about telling them.' Remarked another participant:

'We had a documentary on the on the television some years ago. It was about low functioning autists who aren't able to communicate and are very much disabled ... There's a whole percentage of the population who now believe that all autists are like that. So when I say somewhere that my daughter has autism, I don't even tell them about me, because my daughter is more obvious because she has a speech impediment.'

In many ways, these issues were a continuation of the same stereotypes that may have resulted in participants not receiving a diagnosis as children. For instance, participants discussed how autistic people experience discrimination during hiring processes and how there are limits to how accepted autistic people are in adult professional life. Many expressed the belief that while autism research has expanded and awareness may be heightened, actual acceptance is not. Stereotypes of autistic people as unempathetic and cold, or savant or 'low functioning,' or simply people who bring problems to the workplace, still pervade, and this itself made participants wary of disclosure. For two participants this fuelled a desire to change these perceptions. For most, some of those stereotypes led to dissonance and a further justification for masking.

Study 2 Discussion

The quantitative results of Study 1 indicated that as autistic adults aged they did not experience the gains in QoL as seen in neurotypicals. We investigated this further by assessing the role that age of diagnosis played in this QoL trajectory of autistic adults. In our sample, we found that those who received diagnoses later in life were experiencing more mental health challenges and reported higher levels of autistic traits. To further investigate what challenges autistic adults who received a diagnosis in adulthood faced and better understand their autism journey, we interviewed eight adults diagnosed with autism as adults who had participated in Study 1 about their experiences both living the majority of their lives without a diagnosis, and how receiving a diagnosis affected them. Their interviews uncovered four themes, all of which further enhanced our understanding of the quantitative findings.

Central to the interviews was the idea that prior to receiving a diagnosis, participants had a poor understanding of why they were different from others and that they had to hide these differences to gain acceptance and success. To keep up a façade of normalcy, avoid labels, and fulfil expectations, participants engaged in masking. Like similar research on masking in autism suggests (Hull et al., 2017), participants found the process exhausting, stressful and humiliating. Research on masking in autism suggests that it is incredibly harmful to mental health and is linked with increased depression (Cage et al., 2018) and even suicidality (Cassidy et al., 2018). Masking is also directly related to stigma. People who report more significant masking also report greater consciousness of autism stigma (Perry et al., 2021), illustrating the cyclical effect that stigma has on increasing a person's perceived need to mask and reinforcing the idea that natural behaviors should be hidden. Indeed, participants were all well aware of autism myths, including mindblindness, rudeness, savant abilities and having intellectual impairments which they cited as impacting upon their ability to disclose, and serving as a source of stress. Understanding timing of diagnosis and masking may be an important area of future research. It could be that individuals who have been diagnosed later in life engage in more masking, which contributes to being missed for an earlier diagnosis. This may help explain why QoL outcomes are lower in this subgroup of the population, and could lead to targeted interventions for individuals diagnosed later in life.

Davidson and Henderson ( 2010) discussed that, similar to coming out as a sexual minority, coming out as a neurological minority carries risk for the individual who may be faced with stigma. At the same time, coming out as a minority in any sense can be liberating for several reasons. It increases contact between the neurotypical and autistic world, which improves autism understanding and reduces stigma (Corrigan & Matthews, 2003). That is not to say that disclosure is something that should be taken lightly or something forced on an individual. As Davidson and Henderson ( 2010) highlighted, a great deal more research on how to disclose should be conducted, including the need to highlight strengths and provide explanatory information. In a recent review by Thompson-Hodgetts et al. ( 2020), it was found that disclosure carries risks that may lead to many autistic people to not disclose, including autism becoming a primary identity, and resulting in stigma and discrimination. Indeed, the review found that disclosure is often viewed as beneficial by researchers and professionals but is not considered quite so favourably by autistic people themselves. It shows the importance of giving a voice to autistic experiences to understand this complex process. Future work may want to investigate experiences of disclosure and timing of diagnosis and the effects of disclosure on masking. It may also want to examine the impact of autism-community based counselling to help newly-diagnosed adults navigate these complex issues (Crane et al., 2021).

General Discussion

In summary, we found in Study 1 that autistic adults, unlike neurotypicals, were not experiencing gains in QoL as they aged. Upon closer examination, we found that this was related to age of diagnosis, with those diagnosed as autistic later in life experiencing poorer QoL and higher autistic traits. We also found that gender played a role in this, with women receiving a later diagnosis and reporting higher autistic traits. In Study 2, we investigated how QoL and late diagnoses are experienced by adults diagnosed with autism in adulthood. While receiving a diagnosis was often a positive experience, the diagnostic process and the years lived without a diagnosis were not always easy. In particular, the interviews revealed a need to improve the process of receiving a diagnosis as an adult, including the availability of therapy during and after diagnostic testing, and more broadly, how masking and autistic stereotypes can damage a person's sense of self and impact disclosure.

It is important to note that our sample consisted of individuals who self-reported an autism diagnosis without formal testing that confirmed this to be the case. While research suggests that reporting the age of diagnosis and that it was by a medical professional are reliable indicators of a true diagnosis in a study on parents of children with autism (Daniels et al., 2012), this method would benefit from further validation in an adult sample.

Future research may also want to employ purposive sampling and directly compare QoL and AQ scores in adults who received a diagnosis at specific time points in the lifespan (i.e. in early childhood, late adolescence, middle adulthood etc.). In keeping with a lifespan developmental theoretical framework, identity is influenced differently at different time points of development (Topolewska-Siedzik & Cieciuch, 2019). It would be interesting to understand how people of different ages conceptualize their autistic identities at these other time points and how receiving a diagnosis versus pre-possessing a diagnosis at these ages influences outcomes. Indeed, it may be that there are aspects of receiving a diagnosis that are universal regardless of age. For instance, Mogensen and Mason ( 2015) interviewed autistic teenagers on how a diagnosis affected their sense of self, and the themes are strikingly similar to the themes found in Qualitative Study. This suggests that autistic individuals may benefit from services that allow them to explore issues relating to possessing a neurodiverse identity irrespective of age. It may also be helpful to understand how an understanding of autistic identity changes over time following a diagnosis.

Similarly to Mogensen and Mason ( 2015), our participants in Study 2 were recently diagnosed, and in a sense, still coming to terms with their autistic identity. Future studies would be of interest to understand how individuals assimilate an autistic identity as they go through life. This may be particularly important regarding tailoring support services for individuals at different time points following a diagnosis.

Another limitation is that our results in many ways represent a 'snapshot in time' as services for providing early identification and support for autistic children continuously improve. However, there remain inequalities in identification regarding gender, ethnicity and socioeconomic status (Mazurek et al., 2019). Future research will want to continue researching this topic with younger birth cohorts, who presumably will be diagnosed with autism at an earlier age and with an improved understanding of autistic symptomology. It may be that the future generation of autistic and TD adults will show similar age effects on QoL and AQ profiles considering this increased understanding of autism, earlier identification and better access to supports.

This research has revealed a number of issues with regards to late diagnosis in autistic adults, many of which require further study and recommendations to improve current services. First, our results from Study 1 do not suggest that those with a late diagnosis are in any less of a need of diagnosis than those diagnosed earlier. Indeed, adults diagnosed later in life reported higher AQ scores and lower QoL, indicating that they have not evaded diagnosis due to a less severe set of autistic symptoms or better adjustment. This trend is very much reflected in the qualitative data. Participants described childhoods where they experienced social difficulties in line with what we know affects autistic children diagnosed at an earlier age; they experienced increased rates of social exclusion, bullying, and mismatches in communication. Quantitative results suggest a better quality of life the earlier a person was diagnosed, and qualitative results suggest that despite academic and professional success, participants were painfully aware of how they struggled socially without knowing why, and this led in many instances to depression anxiety and even victimization.

As the interviews reveal, receiving a diagnosis is highly emotional. It involves a reconceptualization of who you are, how you explain yourself to other people, and how you rewrite your own story. Almost every participant talked about the importance of therapy and the difficulty in receiving treatment, with limited sessions and long waits for services. There needs to be perhaps a realization that adults receiving late diagnoses of autism will be dealing with the residuals of years of trauma, of years of being misunderstood, criticized and bullied without knowing why. As suggested by our interviews, receiving a diagnosis allows everything to finally 'make sense.' Still, this involved reflecting on a life without a diagnosis, and redefining who you are, tasks that require a great deal of emotional fortitude. Throughout this process, accessing mental health services is vital, as is more research investigating how to improve the QoL in adults who receive late diagnoses. Our qualitative data suggested several routes. One is the need for individual counselling, which many cited as helpful but limited. Another is the ability for autistic adults with late diagnoses to meet other autistic adults. Several participants discussed the ease of talking to other autistic people, who they believed understood them on a deeper level than they experience with many NTs. Thinking about how counselling services and support groups for newly diagnosed adults could be improved is an important area of future research.

Another area of continued research should be the adult autism diagnostic process's effect on mental health. Participants described stressful, arduous diagnostic procedures for adults. Many discussed choosing to pursue a private diagnosis, as a publicly funded avenue involved years of waiting. All participants discussed the required lengthy repeated testing and having to liaise with parents and partners about aspects of yourself that were hard to talk about, which often involved reflecting on personal struggles and reliving painful memories. Understanding more about the adult diagnostic process and how to make diagnoses and support services affordable, efficient and humane is essential. Current research suggests that diagnostic procedures for adults are poor across countries compared to those of children, which includes a lack of formal support services (Huang et al., 2020). A lengthy diagnostic process with little support along the way may be, in and of itself, a contributing factor to the poorer QoL for adults diagnosed later in life and should be investigated. More research should focus on how we can create a more expedient diagnostic procedure for adults, including self-assessment in the early stages of diagnosis, and assistance for mental health issues while waiting for a diagnosis.

Finally, both studies suggest that there are aspects of receiving a diagnosis early in life that is protective regarding mental health. One possibility suggested by Study 2 with regards to the benefits of a diagnosis is that those who are diagnosed later in life are primarily using their diagnoses as a tool to understand themselves, not to seek supports that would improve their QoL, specifically with respect to their autistic traits. For instance, children diagnosed with autism early in life qualify for specific accommodations and are eligible for services, in line with a shift towards educational inclusion (Farrell & Ainscow, 2002). This means that children diagnosed at an early age are receiving targeted supports early on that increasingly improve outcomes, which may in part explain higher QoL in those with early diagnoses (Flanagan et al., 2012; Granpeesheh et al., 2009; Itzchak & Zachor, 2011).

Creating similar opportunities for adults, including funding therapeutic services where individuals can be guided on disclosure, identity, masking, anxiety, and sensory issues, is critical. Compared to the services available to children with autism, autistic adults have very little available funding support and assistance (Camm-Crosbie et al., 2019). While the years lived without a diagnosis may continue to impact QoL, research such as this highlights that this is a portion of the autism population in current need of supports, though they are in many ways the least supported. Some preliminary research on autistic-led therapy for newly diagnosed adults suggests that this could be a helpful avenue to develop further, as participants reported increased understanding and knowledge when interacting with autistic peers (Crane et al., 2021). More research is needed on the efficacy and feasibility of these types of support groups and how to tailor general counselling practices to address the needs of newly diagnosed autistic adults.

As this research suggests, autistic adults receiving a diagnosis later in life are particularly vulnerable due to the cost of living for so long without a diagnosis. Creating supports for this specific portion of the autistic population is vital if they are to experience the same gains in QoL as they age in relation to their NT peers. As revealed in the interviews, there is hope in that receiving a diagnosis is empowering. It gives autistic adults a chance to reclaim portions of their history in which they were misunderstood. More work understanding how to use a strengths-based approach and an identity-formation framework in working with newly diagnosed autistic adults would be critical for future research.

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Authors and Affiliations

1. Department of Psychology, Edge Hill University, St Helens Rd, Liverpool, Ormskirk, L39 4QP, Lancashire, UK

Gray Atherton, Emma Edisbury & Liam Cross

2. Università Iuav di Venezia, 30135, Venice, VE, Italy

Andrea Piovesan

Contributions

All authors contributed to the study conception and design. Material preparation, data collection and analysis were performed by Gray Atherton, Emma Edisbury, Andrea Piovesan and Liam Cross. The first draft of the manuscript was written by Gray Atherton and all authors commented on previous versions of the manuscript. All authors read and approved the final manuscript.

Corresponding author

Correspondence to Gray Atherton.

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Atherton, G., Edisbury, E., Piovesan, A. et al. Autism Through the Ages: A Mixed Methods Approach to Understanding How Age and Age of Diagnosis Affect Quality of Life. J Autism Dev Disord 52, 3639-3654 (2022). https://doi.org/10.1007/s10803-021-05235-x
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Keywords

Autism

Adulthood

Mental health

Autism quotient

Quality of life

Mixed methods

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Autism Through the Ages: A Mixed Methods Approach to Understanding How Age and Age of Diagnosis Affect Quality of Life - Journal of Autism and Developmental Disorders

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A significant proportion of autistic adults today were not diagnosed until later in life, a group referred to as the 'lost generation,' which may affect mental health. In Study 1 we explored quality of life and autistic trait levels in 420 autistic and TD adults, and in Study 2 we explored the experiences of 8 autistic adults diagnosed as adults.

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Making it to older age against the odds (content notice suicide)

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Making it to older age against the odds (content notice suicide)

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Gemma Williams https://www.ndti.org.uk/resources/publication/making-it-to-older-age-against-the-odds

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Content warning: this conversation starter includes reference to a recent death by suicide.

If you need urgent support, you can contact SHOUT by texting 85258, or the Samaritans by phoning 116123 or emailing jo@samaritans.org. Both services are free of charge.

Over the past couple of years, while living through a pandemic, many people around the UK have had to contend with a growing sense of loneliness. Reduced opportunities for social contact, prolonged periods of isolation and long-term medical shielding have all contributed to a dramatic shift in the way we spend our time and interact with others.

For autistic individuals, loneliness is something that we were already up to four times more likely to experience than the non-autistic population. There's been a pervasive myth for some time now that autistic people don't seek out or desire social connections but that's not at all true: although many of us require and enjoy regular moments of solitude to self-regulate. In addition to factors like lower rates of employment than neurotypical peers and sensory barriers to being in the kinds of public spaces where social interactions take place, autistic people are also more likely to experience bullying, social exclusion and interpersonal victimisation. We also, in general, experience higher incidents of physical and mental health problems than non-autistic people which in turn often contribute to social isolation and feelings of loneliness.

While I was reading around the topic of loneliness for my PhD research, I came across the term ' ethical loneliness' (coined by Jill Stauffer), which seemed to describe something important. 'Ethical loneliness' relates to a feeling of alienation from the world: as a result of being abandoned by society. It's the feelings experienced when a person is dehumanised in some way - either by other individuals or wider political structures - and then ignored when they try to speak out about it or seek help. It reminded me of something an older autistic participant with additional learning disabilities in my loneliness study had said. He'd finally built up the courage to call the number for a local depression helpline one day. He kept calling, but nobody ever answered the phone...

One evening recently, just before Christmas, time stopped still as I heard the deeply sad news that an autistic person from my social circle had died by suicide. We'd actually met in our twenties through a shared interest - making music - before either of us knew we were autistic, and often found ourselves playing the same festivals or gig nights, or sat around the same impromptu Brighton beach bonfire sing-alongs on balmy summer nights. We were weird planets orbiting the same weird sun, and recognised in each other a kind of kinship. Our interests and ways of presenting in the world were different, but we both had the same intensity of passion about the things we loved, we both appeared a bit odd or eccentric to those around us in the ways we dressed or behaved, and both laughed a lot: finding glee in small and invisible things. Although I hadn't seen them for a few years after they moved away we'd kept in touch, sharing our experiences as late-diagnosed autistic people trying to make sense of ourselves in a sometimes confusing and unfriendly world. They were a neuro-sibling whose life mirrored my own in uncanny ways.

As an (autistic) autism researcher, while I was shocked by their passing, I wasn't really surprised. All autistic people are at a significantly increased risk of dying younger from almost every cause of death (but this risk is increased further for those with additional learning disabilities). For autistic adults without co-occurring learning disabilities, the leading cause of early death was found to be suicide in one large Swedish population study which discovered we are 8 times more likely to die from suicide than the non-autistic population. In my own circle, an extraordinarily high number of the autistic people I know have experienced suicidal thoughts at some point. Unmet support needs, a higher likelihood of mental health problems, the pressures of 'camouflaging' or 'masking' to fit in, burnout from sensory overwhelm, loneliness and social isolation: all of these things contribute to the increased risk of death by suicide among autistic folk. These figures are appalling in their own right, but they also contribute to a further problem: that we know so little about what it means to be autistic and to live into older age.

For many autistic people, reaching older age represents a feat of survival in a world that can often feel hostile. Our autistic elders are the ones who have made it. The fact that older autistic people then go on to become so invisible, and their needs so overlooked feels especially unforgiveable. For people of all neurotypes, older age often brings life changes that can mean social isolation and loneliness is a greater risk: let's not abandon them further. Let's listen to what they have to say...
About the author:
Gemma Williams is an autistic researcher, currently working as an Associate with the NDTi and on an ESRC Postdoctoral Fellowship in Social Policy at the University of Brighton.

Gemma's research interests include communication between autistic and non-autistic speakers, loneliness, social policy and autistic sensory perception.
Related resources or further reading
Hirvikoski, T., Mittendorfer-Rutz, E., Boman, M., Larsson, H., Lichtenstein, P. and Bölte, S. (2016) Premature mortality in autism spectrum disorder. The British Journal of Psychiatry, 208(3), pp.232-238.

Pearson, A., Rees, J. and Forster, S. (2020) "This was just how this friendship worked": Experiences of Interpersonal Victimisation in Autistic Adults. Autism in Adulthood.
Quadt, L., Williams, G. L., Mulcahy, J.S., Silva, M., Larsson, D., Arnold, A., Critchley, H. and Garfinkel, S. (2021) " I'm trying to reach out, I'm trying to find my people": Loneliness and loneliness distress in autistic adults. Stauffer, J. (2015). Ethical loneliness: The injustice of not being heard. Columbia University Press. Williams, G. L. (2020) From anonymous subject to engaged stakeholder: Enriching participant experience in autistic-language-use research. Research For All, 4 (2): 314-28

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Making it to older age against the odds - NDTi

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Content warning: this conversation starter includes reference to a recent death by suicide. If you need urgent support, you can contact SHOUT by texting 85258, or the Samaritans by phoning 116123 or emailing jo@samaritans.org. Both services are free of charge.

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Strategies for Research, Practice, and Policy for Autism in Later Life: A Report from a Think Tank on Aging and Autism (Stephen M Edelson et al)

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Strategies for Research, Practice, and Policy for Autism in Later Life: A Report from a Think Tank on Aging and Autism (Stephen M Edelson et al)

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Journal of Autism and Developmental Disorders

J Autism Dev Disord. 2021; 51(1): 382-390.

Abstract

Over the past decade, there has been a growing interest in adults on the autistic spectrum, and more recently, the challenges related to aging in this population. A two-day Think Tank meeting, focused on aging in autism, was convened amongst international leaders in the field of autism research and practice. This meeting included a series of presentations addressing the current status of aging research, followed by discussions regarding priorities going forward. Attendees shared their thoughts and concerns regarding community services, government policies, societal perspectives and physical and mental health. The goal of these discussions was to consider systematic approaches aimed at providing meaningful supports that can ensure a quality of life for seniors on the autism spectrum.

Keywords: Autism, Aging, Seniors, Think tank

Introduction

As people age, their physical health and cognitive abilities can be negatively impacted and, in some cases, deteriorate over time. The participants attending this meeting focused on how the aging process may affect numerous aspects of life for seniors on the autism spectrum. It is now recognized that many autistic individuals experience health and cognitive dysfunction beginning in childhood. Many of these same health and functional issues are often observed in the neurotypical population including the elderly. Some of these ongoing and emergent issues include immune and gastrointestinal disorders, reduction in bone density, sleep disorders, sensory sensitivities, weight management as well as challenges in executive and cognitive function.

The sponsors assembled participants from differing disciplines, all with relevant areas of study and expertise, and with varying clinical and research backgrounds. Given the growing identification of autistic seniors worldwide and increasing concern for their health and welfare, the goals of the meeting were to identify and address relevant clinical and research issues and to recommend best approaches to the study of age-related factors in autism.

Varied perspectives regarding preferred terminology used to describe autism were discussed at the beginning of the meeting. Two distinct perspectives included "person-first" language (e.g., "adult with autism") versus "identity-first" language (e.g., "autistic adult"). In deference to the wishes of the autistic participants attending the meeting, the group agreed to use either identity-first language or the more neutral phrase, "adults on the spectrum."

First described in 1943, autism is a complex, life-long condition involving different etiologies, clinical presentations, and developmental trajectories. Over the years, diagnostic and clinical assessment criteria have undergone multiple iterations and adaptations (Kanner 1943; Verhoeff 2013; Wolff 2004). Autistic individuals also share commonalities including challenges in communication, social reciprocity, and behavior. Such challenges have not sufficiently been assessed throughout the life span, and little is known about how the aging process interacts with these challenges nor how autistic adults navigate and/or cope or struggle with the aging process. Such challenges likely impact overall impact experience, well-being, autonomy, life skills, and much more. Further, many autistic individuals grapple with co-occurring medical and behavioral health conditions (Ghaziuddin et al. 2002; Schiff and Asato 2015; Underwood et al. 2019); thus, inviting further focused study on autism and aging.

Historically, the focus in the autism field has been on awareness, diagnosis, and interventions, especially for children on the spectrum. Although our understanding of autistic adolescents and adults is growing, relatively little is known about autistic mid- and later-life (Wright et al. 2013). In contrast, for the general population, the fields of gerontology and geriatrics have received substantial attention, with studies and initiatives underway that may shed insight onto the aging process from the biologic, neuroscience, social science, and health service prospective (Freitas et al. 2002). Similar efforts focused on individuals on the autism spectrum will likely provide insights into providing life-long support as well as offering guidance for public policy. To that end, there is a need to review what is currently known about aging in the general population and in the autism community in order to ascertain priorities in both research and clinical and practice.

Think-Tank Meeting/Consultation

The Think Tank meeting, held in October, 2017, was internationally sponsored by Autism Canada, the Pacific Autism Family Network, and the Autism Research Institute. Invitees included autistic adults, clinicians, service providers, researchers, and opinion leaders. The 27 participants hailed from five different countries including Canada, the United States, Australia, England and the Netherlands, the representatives from the latter two countries participating online. Although autistic individuals were present at the meeting, it was acknowledged that a greater representation of autistic individuals from the wider spectrum would have added a broader perspective on topics raised and discussed. However, every effort was made throughout the meeting to address the broad range of concerns and needs of the wider autistic community including those with severe challenges in communication and sensory sensitivities as well as those with significant medical and/or mental health issues.

The Think Tank had three objectives:

1. To bring together autistic individuals, researchers, clinicians and policy makers to identify individual and contextual factors facing the aging autistic population and their families;

2. To promote a multi-role and inter-professional approach to identifying the unmet physical, medical, social and service needs experienced by aging autistic individuals and their families;

3. To facilitate international networking and collaboration around common priorities and to advance research, knowledge, and solutions for issues related to aging in those on the autism spectrum.

Think Tank Deliberations

Discussants extensively conveyed their perspectives about issues and perspectives about aging and autism. However, they acknowledged the need to approach this area of research, practice and policy reflection and development in sharing understanding, orientation and language. Orienting sensitivities emerged from participant reflection such that it was determined that the advancement of practice and scholarship needs to respect emergent principles of: integration and inclusiveness, proactive terminology, a socio-ecological orientation, and a focus on abilities as opposed to disabilities. Each of these orienting sensitivities are outlined below.

Integration and Inclusiveness

It was agreed that an integrative and inclusive approach to establishing priorities involving health care, service and research agendas should include input from autistic individuals, their family members, the community, and the social-political environment. It was further determined that autistic adults should be included in formulating necessary support and interventions as well as establishing government, programmatic and policy initiatives. This perspective echoes the disability rights oriented 'mantra' espousing nothing about us without us and as such, is aligned with worldwide disability rights movements (e.g., Adoption of the Convention on the Rights of People with Disabilities [CRPD [ https://www.un.org/development/desa/disabilities/convention-on-the-rights-of-persons-with-disabilities.html, 2006]). In addition, it was determined that individuals across the entire autism spectrum and their family members should have an active role in the planning and implementation of research projects.

Socio-ecological Model

A socio-ecologic model or perspective conceptualizes autism in the context of multiple interacting factors that are viewed to be reflective of autism 'in real life' and more encompassing than its portrayal within a medical model. The socio-ecological model includes the person and relevant environments that interact over time, including across the life span. This model represents the need to consider aging and autism beyond the individual and includes aspects of interpersonal relationships, family, community, policy structures and the larger society and culture in which the individual resides. This conceptual model is informative for this inquiry, and has been presented in the literature as the lens used to frame the content and chapters included in the edited book and aging in autism entitled, Autism Spectrum Disorder in Mid and Later Life (Wright 2016).

Abilities as Opposed to Disabilities

It was agreed that autistic individuals should be viewed in the light of their strengths and abilities, whereas their challenges should be viewed as socially constructed and not a reflection of a personal deficiency or as an anomaly or a deviation from the 'norm'. In addition, for clarification, the term "autism community" should be used to refer to the inclusion of families and the extended community, whereas the term "autistic community" should be used to refer to the community of individuals on the spectrum.

Emergent Themes in Supporting Knowledge, Practice and Research in Aging and Autism

Three main themes were discussed: (1) understanding how individuals on the autism spectrum progress throughout their lives, and in particular, throughout their adult lives; (2) determining how best to provide lifelong support to autistic adults and seniors, and (3) developing effective means to assess their physical and mental health using appropriate research, clinical methodologies and validated outcome measures. Each of these key themes are briefly outlined below.

Understanding How Individuals on the Autism Spectrum Progress Throughout Their Lifetime

Several elemental considerations emerged in considering autism across the lifespan. These considerations consisted of (1) the heterogeneity of autism, (2) the scarcity and unique phenomenon of an autism diagnosis in adulthood, and (3) co-occurring medical conditions and mental health issues. Each are discussed below, as they relate to aging in autism.

Heterogeneity of the Autistic Population

It is acknowledged that there are varying underlying subtypes of autism. During early life, many symptoms and behaviors may be very similar and overlap, but differences may become more distinguishable and idiosyncratic over time. Because of these variabilities, autistic individuals may have different developmental and prognostic trajectories associated with variable patterns of strengths and abilities as well as challenges and vulnerabilities, any and all of which may evolve differentially over the life course. Both basic and applied research will be needed to identify, understand and differentiate these unique subtypes and processes, and to bridge the gap between biological mechanisms and clinical phenotypes and functionality.

Diagnosis in Mid- To Late-Life

It has been established that individuals with more challenges will likely be given a diagnosis of autism early in life in contrast to those with more subtle clinical/symptomatic differences (Zwaigenbaum et al. 2019). Although our knowledge of the prevalence of autism in adulthood is limited, a United Kingdom study by Brugha et al. ( 2009) estimated the prevalence to be ~ 1%. However, Spencer et al. ( 2011) noted the potential for underestimation since "individuals with less severe disorders often go undiagnosed" (p. 891). Some autistic persons may be misdiagnosed and given a psychiatric diagnosis (Luciano et al. 2014). Volkmar and Pauls ( 2003) have estimated that approximately 15% of individuals on the spectrum may obtain self-sufficiency in adulthood, with an additional 15-20% able to accomplish some level of self- sufficiency with some support. Those diagnosed later in life may have milder symptoms and higher levels of functionality (Jones et al. 2014). In addition, some individuals diagnosed later in life have learned to adapt to their physical and social challenges and hence, their diagnosis may be 'masked'. However, although undiagnosed, many of these individuals may still experience a range of autism-related and ancillary features (Griffith et al. 2012).

Unfortunately, there are as yet few validated and reliable assessments designed specifically to diagnose autism in adults (Wigham et al. 2019), and no diagnostic measures directed toward autistic seniors. Many adults and seniors on the autism spectrum have been and continue to be misdiagnosed and consequently are under-served (Au-Yeung et al. 2018). Misdiagnoses and under-diagnoses may be the result of healthcare systems in which providers are not sufficiently trained to recognize the communication, behavioral and sensory challenges as well as the medical needs and social/emotional needs faced by autistic adults. With the growing population of individuals in (and moving toward) these age-related categories, a validated assessment specifically directed to the accurate diagnosis of autistic seniors is increasingly needed in order to delineate daily and medical needs and to provide individuals access to needed and appropriate services.

Co-occurring Medical Conditions

In recent years, researchers have increasingly documented co-occurring medical conditions in autistic youth and adults, including allergies, gastrointestinal dysfunction, sensory-related sensitivities, urinary track disorders, pain and discomfort, dental concerns and insomnia (Davignon et al. 2018; Hohn et al. 2019). Medical conditions may also be associated with behaviors of concern, such as head banging due to migraine headaches or ear infections. Disruptive and aggressive behaviors can also be associated with pain, most especially in those who are non-verbal or hypo-verbal and who cannot express or physically indicate the presence and location of their discomfort (e.g., De Lissovoy 1962, Durand and Moskowitz 2016, Mahler 2017). Other behaviors such as eye poking has been reported to be associated with calcium deficiency (Coleman 1994). Further complicating the diagnosis of associated medical conditions is the fact that individuals may not present with symptoms typically recognized by health care providers or specialists, and may therefore be missed. More research is needed regarding the role of co-occurring medical conditions in autism, including their symptomatic presentations and behavioral manifestations, how these medical conditions and symptomatic features may change with age, and how they can be accurately identified and effectively treated. We also need to learn more about specific health conditions associated with aging, such as arthritis, cancer, hypertension, diabetes, obesity, stroke, and dementia; and how these conditions manifest in autistic individuals. In addition, we need to know how autistic individuals respond to standard therapies commonly used to treat these conditions and if different, what therapeutic approaches would prove most effective in this population.

Mental Health Issues

Research and proactive practice are needed to better understand and address co-occurring mental health conditions and issues (e.g., anxiety, depression, obsessive compulsive disorder (OCD), catatonia, cognitive and executive impairment), and their potential progression over the life course (Underwood et al. 2019; White and Franklin 2018). In addition, we need to understand how commonly prescribed medications, such as anti-depressants, anti-psychotics, and anti-anxiety medications, affect this population, It has been noted that some non-medical approaches may be helpful in treating some mental health issues, including cognitive-behavior therapy and mindfulness training, with some protocols being adapted to better meet the needs of autistic adults (Rodgers and Ofield 2018). Improved training of mental health professionals about how to adequately support autistic individuals should be a high priority as well as the need to significantly expand overall access to skilled mental health services within the health care system.

Several autistic participants at the 'Think Tank' meeting shared their personal experiences regarding the handling of traumatic events in their life. Attendees were poignantly reminded of the need to understand how autistic adults experience, process, and navigate these events in order to recommend ways to effectively manage and treat various forms of trauma (Haruvi-Lamdan et al. 2018), as well as nurture more receptive and supportive systems and communities.

Although these neuro/physiological and mental health issues comprise complex and multi-layered challenges for science and practice, greater understanding of the aging process in autism is needed in order to translate, and in some cases develop strategic interventions targeted program innovation, and efficient healthcare policies. It was noted that guidance for program and policy development should be made available in all countries in order to ensure worldwide capacity development, thereby seeking to redress resource and practice inequities that differentially limit care to autistic individuals in low to mid-income countries.

Considerations for Developing Optimal Means to Support Autistic Adults as They Move Through Adulthood and Into Old Age

Attendees advocated for the development and implementation of evidence-based and informed supports to prepare autistic adults for a positive transition into and through old age. They identified priority aims of greater awareness and understanding, education, and employment. Each of these aims are outlined below.

Increase Awareness and Understanding

It was postulated that better public awareness of adults and seniors on the autism spectrum will likely lead to improvement in communication, accommodations, and opportunities for autistic adults and seniors which, in turn, may optimize their quality of life. For example, in ensuring resources to navigate one's environment, greater consideration was advocated for an individual's style of social communication and sensory sensitivities. Besides the general public, those working directly or indirectly with autistic individuals should be made aware of the issues and challenges often faced by autistic seniors, and ways to proactively address these challenges. Among others, such groups include: (1) personnel working at residential and long-term care facilities, (2) healthcare and allied professionals, and (3) first responders (e.g., emergency services). It was particularly noted that greater awareness is needed about the variety of sensory sensitivities that exist among autistic individuals.

Education

Participants noted that postsecondary education in relation to employment opportunities can be viewed with both enthusiasm and concern. There remains a void in services and support for many autistic individuals following their transition from high school or college to employment (Anderson et al. 2018; Lambe et al. 2018). The capacity for learning, in general, does not end at 18 years of age (i.e., at the end of one's formal/traditional high school education). Publicly-funded postsecondary education and professional training are needed to support autistic adults in achieving employment and career goals, and to attain and retain meaningful positions in the workforce. While receiving a postsecondary education, some autistic individuals may need support to handle various pressures of schooling and campus life, such as social relationships, studying for exams, and writing reports (Anderson et al. 2018). Moreover, ancillary supports may be needed including accessible and affordable mental health services as well as assistance in navigating time, educational requirements and community living.

Employment

It was noted that for adults, a stable job provides opportunities for social interaction, financial security, and independence. Employment can lead to a positive sense of well-being and a lower risk of depression (Hedley et al. 2019). However, long-term employment can be difficult even for those with training and academic credentials (Taylor et al. 2015; Baldwin et al. 2014). Unfortunately, many employers today are unwilling or unable to make the necessary accommodations to provide the required support to address autistic individuals' unique needs. Moreover, because of the unnecessary ancillary social or sensory demands of a work environment and the lack of supports, many individuals on the spectrum remain unemployed, or are employed in jobs that are below their skill level and/or not personally rewarding (Taylor et al. 2015).

Positive attitudes and flexible business environments are needed to create more accessible and sustainable jobs. Public and private sectors need to nurture meaningful jobs for autistic individuals as well as enhance support and guidance for their career aspirations. Family and community partnerships can also play an important role in preparing individuals for employment and supporting steady and fulfilling jobs (Nicholas et al. 2018).

It is important to note that unemployment can lead to social isolation, personal struggle and financial strain, factors that can have a bearing on individual and family financial reserves and thus options for, and well-being in, senior years. Furthermore, unemployment, under-employment and/or insufficient community supports associated with employment may leave autistic adults at greater risk for depression and other mental health issues. Understanding the ongoing impact of these risk factors on the aging autistic individual warrants further study and proactive action for change.

To better understand and address key employment issues over time, there is need for longitudinal studies on employment and its impact over the lifespan, including into old age and in retirement. Such research should include methodologies and metrics to assess numerous parameters such as: (1) engagement, retention and susceptibility, (2) capacity building among employers and coworkers, (3) community involvement, and (4) the relationship of employment to what is important to the autistic adult, in the development of a desired career.

Community-Based Support

Meeting attendees recommended more community-based solutions and interventions to redress social isolation and promote inclusivity (Farley et al. 2018). In addition, attendees determined that there is need for more effective advocacy, with regard to supporting life course decisions and opportunities for both individuals on the spectrum and their care providers.

Rather than starting new programs focused on older autistic adults, it was thought that a place to start might be to begin to systematically examine existing programs in relevant sectors and communities, to consider how they might be adapted and expanded to meet the needs of autistic adults. It was recognized that there is a substantial knowledge base on the aging process in non-autistic individuals, which may inform or offer 'points of exploratory departure' when studying the aging process in autism. Research on gender difference and other social determinants may be important in attending to diverse care needs, including consideration of requisite options in care resources for elderly autistic adults.

Housing

There is a substantial need noted among participants to develop solutions and optimal options for community-based residential living (Mandell 2017). In general, long-term care programs for the non-autistic population is far from ideal, but similar programs for autistic individuals and others living with various neurodevelopmental conditions, likely are much more challenging. Caregivers employed by retirement homes and/or other long-term care facilities may be ill-prepared to accommodate the needs of the autistic population. Thus, specialized training programs are needed for staff in residential care facilities as well as the development of alternatives to facility-based care. Much can be learned from studying inclusive multi-generational and trans-generational housing alternatives, which are gradually becoming popular in the United States and various other world regions (Cohn and Passel 2018).

Opportunities for Sharing Personal Needs and Concerns

Personal concerns about aging and autism were shared by autistic adults who attended the meeting. The importance of attentively listening to autistic people 'deeply' and responsively was highlighted; this is always important but particularly critical as they approach and/or experience mid to later life. Attendees' concerns in approaching old age variably included: (1) maintaining an independent lifestyle, (2) self-identifying health issues prior to requiring medical intervention, (3) learning how to (and being able to) find appropriate support when needed, and (4) remembering to take medications. Those who experience anxiety and/or depression were concerned with how these challenges might change as they age.

Employed autistic adults identified apprehension about managing post-retirement life, and the associated loss of work-related colleagues and friends. For all autistic adults, concern was raised about the possibility of receiving less support from their relatives over time. In addition, autistic attendees stressed the need for their gender identity and sexuality to be acknowledged and respected throughout their life. And finally, they noted that people, in general, should be sensitive when talking about the individual's future lifestyle, and avoid raising troubling and potentially erroneous predictions. Accordingly, hope is important and not to be diminished or deposed. Individual resilience amidst challenge which is so often demonstrated by autistic people, should not be dismissed in overly-negative accounts or predictions. Proactively addressing real issues and risk is certainly recommended, but in a strengths and hopeful ethos.

Concern was raised that, in association with the aging processes and/or shifts therein (e.g., congregate senior housing), there could be less attention paid to individual rights about one's identity, values and preferences. Moreover, that there is substantial heterogeneity both in autism and the aging process in terms of the multi-directionality of life course trajectories. Considering and respecting human rights and preferences for aging and life values and the multidimensionality of "subjective" aging merit careful intersectional consideration relative to physical, psychological, and social domains.

Advancing Means to Effectively Assess the Physical and Mental Health of Autistic Adults, Using Appropriate Research Methodologies and Outcome Measures

Participants affirmed that substantial advancement is needed regarding adult-based autism research. However, they stressed that careful attention would need to be directed to the relevance and benefit of that research to the autistic community. Elemental considerations were identified including research recruitment, types of studies, and outcome measures, as briefly summarized below.

Recruitment

A major challenge in conducting research on aging in autism is the need for recruitment of a relatively large sample size of seniors on the spectrum. This is compounded by the realization that a sizable number of autistic adults are unidentified or misidentified relative to autism. In addition, some of these individuals may not wish to have a diagnosis of autism or may not be able to access (or affordably access) a diagnosis, given system capacity limits. Others may be living in diverse or precarious circumstances (e.g., homelessness, long-term care, incarceration) that may impede or preclude confirmation of a diagnosis. Concerted attention is needed by researchers, clinicians, health care providers, social workers, policy makers, etc. to better identify autistic individuals and to ensure needed support.

Some researchers have been successful in recruiting autistic individuals and their family members by relying on innovative, meaningful, and tailor-made approaches (Nicolaidis et al. 2019). Strategies have included offering various methods of communication, (e.g., online versus paper, visual versus oral), and allowing participants to choose the format that best works for the individual. In addition, data collection meetings and settings have been offered in sensory-friendly places that include accommodations for individual preferences and needs (Nicolaidis et al. 2019). Additional possible research recruitment mechanisms could include working collaboratively with support networks that have access to adults on the spectrum (Hass et al. 2016). Nicolaidis et al. ( 2019) have illustrated the use of participatory research methods which offer promise in ensuring engaged research approaches that remain close to the particular needs and priorities of autistic individuals.

Types of Studies

There was much discussion on the advantages of conducting a large-scale longitudinal study. Such a study could systematically track a large group of autistic individuals over many decades while evaluating numerous parameters on a regular basis, such as mental health, physical health, and quality of life. It was also mentioned that repeated self-reporting by autistic individuals and their care providers may be a promising way to track development, experiences and shifts in adulthood and later life.

Such a longitudinal study could also include obtaining biological samples and eventually brain tissue. This would likely provide detailed insight into how autism progresses over the life course and improve correlations between clinical phenotypes and neurobiological mechanisms. At this time, current research involving brain tissue has been impeded by the heterogeneity among the autism spectrum disorders as well as differing clinical or functional presentations and developmental trajectories. Furthermore, there has been a lack of detail regarding an individual's medical history, development, therapies, and educational backgrounds, thus limiting opportunities for reliable clinical and neurobiological correlations.

Unfortunately, longitudinal studies, in general, are difficult to sustain and are costly. This work, as well as the need to address research gaps relative to autism in adulthood, warrant further funding for robust and impactful studies to optimize knowledge gain. Furthermore, it will take a considerable amount of time to find answers to many pressing questions, such as optimally effective interventions. Cross-sectional research is a methodological option that allows comparison of individuals of different ages. However, since there are numerous trajectories, it would be challenging to objectively associate each cross-section to one another.

Outcome Measures

There was consensus among attendees that standardized and targeted metrics are needed to assess the unique symptoms of autistic adults, and to more effectively evaluate their levels of functioning. Accordingly, further metric development is needed. To that end, validated data measurement tools and methods which have been developed in the gerontology field may potentially be adaptable for autism. Given the proportionally small number of currently identified autistic adults over 50 years of age relative to younger cohorts, it was recommended that research groups worldwide combine their data to increase overall sample sizes and work collaboratively to optimize comparison controls with the aim of yielding statistically significant outcomes. The development of research collaborations will increase the likelihood of obtaining impactful population-based results in a relatively short period of time, yet attention to cultural variation across international sites may be an important methodologic and interpretive consideration.

Program Success Stories

Building on successes, discussants identified the importance of identifying evidence-informed and/or promising practices for older autistic adults. Identified examples of promising programs/incentives were outlined, as follows:

The Ontario (Canada) Working Group on Mental Health with ASD ( https://www.porticonetwork.ca/web/adult-asd) has developed strategic plans to increase awareness about mental health needs of autistic adults among physicians.

The Redpath Centre in Canada ( https://redpathcentre.ca/) provides various services for autistic individuals and other neurodevelopmental conditions throughout the lifespan. They also conduct research, educate stakeholders and advocate for system change.

The Star Raft model (USA) ( https://thestarraft.com/) is a tool that helps build and sustain family-friendly, person-centered support networks.

These examples demonstrate increased interventional work that is addressing the needs of autistic adults. However, it is acknowledged that substantial advancement in research, policy and service delivery is needed. Services and resources specific to autistic seniors must be developed as the population ages. Family members, professional agencies, and government departments must be prepared to provide the necessary guidance and funding to properly support these individuals.

Discussion

The Think Tank offered important priorities, considerations and cautions in the quest to advance understanding and quality of life for seniors with autism. In moving toward that end, cautions were strongly endorsed regarding core terminology, philosophical and practical understandings as well as theoretical underpinnings in practice, research and policy development. It was concluded that common practices in research, community services, policy, and societal discourses have variably and often insufficiently rendered autistic adults as central in commentary and planning about aspects pertaining to their own lives, including how autistic individuals are viewed and supported. In response, it was argued that 'engagement as central' needs to underpin adult and aging-based research in autism.

Key areas of further consideration in advancing research and clinical and community practice reflected the critical importance of listening to autistic individuals across the lifespan (not just during younger years), with particular attention on the heterogeneity of autism, co-occurring conditions and/or other salient issues, improved supports for aging autistic adults, and strategies to redress existing barriers to quality of life. Methodological advancement in building a strong aging autism research base has been emphatically advocated with particular attention needed in methods of recruitment, study design and data analysis. It is hoped that increased research in autism and aging will better support the autism community relative to supports and services specifically directed to autistic seniors. Applying current challenges, concerns and risks to seniors in congregate living facilities as a result of the COVID-19 pandemic warrant careful study about the unique risks and challenges faced by elderly and/or frail autistic persons in such settings and circumstances.

In addressing these substantial issues and opportunities for advancement, pioneers in this field are encouraged to collaborate in order to advance collective approaches, via visionary leadership and seeking increasing funding support from the scientific and policy communities. More expansive and sustainable collaborations are needed in the aim of finding solutions to the challenges faced by autistic seniors now and in the future. Such research and action must be linked to direct quality of life benefits via supporting optimal community-based services and resources for autistic people across the lifespan.

Conclusion

Key areas of practice and research development relative to autism and aging were informed by this Think Tank. Listening well, better understanding and proactively responding to aging autistic individuals relative to their experiences and needs emerged as a central to action and collective advancement. Appraising the impact of autism on aging (and vice versa) merit public investment as does supporting aging autistic people in their right for, and important pursuit of, lives of quality.

Acknowledgements

We acknowledge the support of Autism Canada, the Pacific Autism Family Network and the Autism Research Institute Thanks to Aging and Autism Round Table discussants for their input in this paper: David Amaral, Evdokia Anagnostou, Margaret B. Bauman, David Black, Sergio Cocchia, Stephen M. Edelson, Hilde Geurts, June Groden, Georges Huard, Caroline Jose, Wenn B. Lawson, Suzanne Lewis, Laurie Mawlam, Dawn McKenna, Rae Morris, Christina Nicolaidis, David Nicholas, Jeremy Parr, Lars Perner, Kevin P. Stoddart, Sue Vandevelde-Coke, David Wetherow, Faye Wetherow, Scott D. Wright, and Elizabeith (Beth) Zwick

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Strategies for Research, Practice, and Policy for Autism in Later Life: A Report from a Think Tank on Aging and Autism

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Over the past decade, there has been a growing interest in adults on the autistic spectrum, and more recently, the challenges related to aging in this population. A two-day Think Tank meeting, focused on aging in autism, was convened amongst international ...

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My autistic menopause (#Twitter thread) @NortherlyRose

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My #autistic #menopause with and without hormone treatment.
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I was horrified. 
It’s difficult to describe just how bad things were before I started using HRT patches.
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#Thread
My #autistic #menopause with and without hormone treatment.
It’s 12 days since my GP told me I had to stop using hormone treatment patches for the next four weeks.
I was horrified. 
It’s difficult to describe just how bad things were before I started using HRT patches.
1/

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#Thread
My #autistic #menopause with and without hormone treatment.
It’s 12 days since my GP told me I had to stop using hormone treatment patches for the next four weeks.
I was horrified.
It’s difficult to describe just how bad things were before I started using HRT patches.
1/
— Autistic Rose (@NortherlyRose) June 11, 2022

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#Thread
My #autistic #menopause with and without hormone treatment.
It’s 12 days since my GP told me I had to stop using hormone treatment patches for the next four weeks.
I was horrified. 
It’s difficult to describe just how bad things were before I started using HRT patches.
1/

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#Thread
My #autistic #menopause with and without hormone treatment.
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I was horrified. 
It’s difficult to describe just how bad things were before I started using HRT patches.
1/

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My #autistic #menopause with and without hormone treatment.
It’s 12 days since my GP told me I had to stop using hormone treatment patches for the next four weeks.
I was horrified. 
It’s difficult to describe just how bad things were before I started using HRT patches.
1/

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Autism Identity and the “Lost Generation”: Structural Validation of the Autism Spectrum Identity Scale and Comparison of Diagnosed and Self-Diagnosed Adults on the Autism Spectrum.             T.A.M. McDonald

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Autism Identity and the “Lost Generation”: Structural Validation of the Autism Spectrum Identity Scale and Comparison of Diagnosed and Self-Diagnosed Adults on the Autism Spectrum.             T.A.M. McDonald

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Recent research has suggested that some individuals, such as women, older individuals, and people with higher intelligence, may not be given the diagnosis of autism even when they should receive one. These individuals, called the “lost generation,” might also not receive treatments or services that they would be qualified for if they had an autism diagnosis.

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Autism and Ageing Well (Autism Network Scotland YouTube video) 

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Living with autism without knowing: receiving a diagnosis in later life

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Autism in Later Life: What Is Known and What Is Needed?

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Autism in Later Life: What Is Known and What Is Needed?

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Marisse Sonido et al

Overall, there is a notable lack of studies that focus on older autistic adults and on ageing-relevant topics, with a particular absence of the autistic voice in the research. Resultantly, there remains a gap in our knowledge regarding the specific circumstances and needs of autistic adults in older age. In moving forward, it will be important to fill this gap with inclusive research to guide the most relevant and effective work that improves outcomes for this population.

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Autism Spectrum (A Richdale and L Lawson, Section Editors)

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Abstract

Purpose of Review

Autism is a lifelong neurodevelopmental condition characterised by differences in social interaction and communication across multiple contexts, as well as restricted, repetitive patterns of behaviour or interests. As all adults age, they face an appreciable decline in health and functioning. For autistic adults, the challenges are twofold: they may face autism-specific effects of ageing as well as other non-specific, age-related effects experienced by the general population. This report summarises the available literature regarding older autistic adults over the age of 50, from 2010 to mid-2019.

Recent Findings

Emerging evidence suggests that older autistic adults experience complex physical and mental health comorbidities. Studies that have included older adults report challenges such as underemployment, a lack of appropriate healthcare, and concerns for caring relationships as the adult ages. However, these studies have tended to be skewed towards younger and middle-aged adults.

Summary

Overall, there is a notable lack of studies that focus on older autistic adults and on ageing-relevant topics, with a particular absence of the autistic voice in the research. Resultantly, there remains a gap in our knowledge regarding the specific circumstances and needs of autistic adults in older age. In moving forward, it will be important to fill this gap with inclusive research to guide the most relevant and effective work that improves outcomes for this population.

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References

Papers of particular interest, published recently, have been highlighted as: * Of importance ** Of major importance

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Funding

This work was supported by the Cooperative Research Centre for Living with Autism (Autism CRC), established and supported under the Australian Government's Cooperative Research Centres Program.

Author information

Authors and Affiliations

1. Department of Developmental Disability Neuropsychiatry (3DN), UNSW, Sydney, New South Wales, Australia

Marisse Sonido, Samuel Arnold & Julianne Higgins

2. Cooperative Research Centre for Living with Autism (Autism CRC), Brisbane, Queensland, Australia

Marisse Sonido, Samuel Arnold & Julianne Higgins

3. Kirby Institute, UNSW, Sydney, New South Wales, Australia

Ye In Jane Hwang

Corresponding author

Correspondence to Samuel Arnold.

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Conflict of Interest

Samuel Arnold reports grants from Autism CRC during the conduct of the study. Julianne Higgins reports grants from Autism CRC during the conduct of the study. Marisse Sonido and Ye In Hwang declare no conflicts of interest relevant to this manuscript.

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This article does not contain any studies with human or animal subjects performed by any of the authors.

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Sonido, M., Arnold, S., Higgins, J. et al. Autism in Later Life: What Is Known and What Is Needed?. Curr Dev Disord Rep 7, 69-77 (2020). https://doi.org/10.1007/s40474-020-00192-z
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Keywords

Autism

Ageing

Diagnosis

Outcomes

Functioning

Health services

Aged care

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# data[].attributes.attachment_link.title
Autism in Later Life: What Is Known and What Is Needed? - Current Developmental Disorders Reports

# data[].attributes.attachment_link.description
Purpose of Review Autism is a lifelong neurodevelopmental condition characterised by differences in social interaction and communication across multiple contexts, as well as restricted, repetitive patterns of behaviour or interests. As all adults age, they face an appreciable decline in health and functioning.

# data[].attributes.body
Ann Memmott

# data[].attributes.attachment_link.readable_text
In a world taught to think of autistic people as male children & adolescents, allegedly destined for a lifetime as costly burdens on parents and society, we have arguably lost sight of the majority of autistic people. Recent research shows how many autistic adults are likely to be older, undiagnosed, undiscovered, and almost entirely unexplored in research. What wisdom and contributions do we miss from our older autistic population?

A new paper by Mason and team (2022) shows that almost no research has been done on older autistic individuals. Although some 33,000 research papers focus on children, fewer than 175 are about older autistic people.

The Royal College of Psychiatrists in their 2020 report on autistic lives write that, "It is recognised now that most autistic people are adult, do not have an intellectual disability and are likely to be undiagnosed". Almost everything we think we know about autism may be based on very incomplete information, it seems.

So, what do we mean when we say that autistic people are some lifelong burden? How can we know what autistic lives are like, what we contribute to society, or what our needs are, when almost no research has been done on older autistic people?

I'm not keen on a 'deficit model' of autism. There is good research showing how awful it is to self esteem and quality of life, to live as a long list of 'deficits'. (Botha, Dibb & Frost, 2020) Especially when the newer research points so strongly to autistic social skills being different rather than deficient, and to autistic strengths aplenty.

I work amongst many hundreds of autistic specialists, academics, teachers, supermarket workers, factory workers, accountants, solicitors, surveyors, nurses, doctors, lawyers, librarians, mechanics, managers, artists, actors, poets, writers...the lists are endless. So many only received a diagnosis or an affirmation of being autistic in their adult years. I also work amongst many hundreds of autistic people who are retired, who are parents, who are grandparents, who are volunteers for charity, community and faith projects. Often, they are combining several of these roles.

Yes, like me, they may have spent early life without a good command of spoken language.
Yes, like me, they may have areas that need support, in everyday life - a support structure that takes into account varying health, tiredness and all the other factors that affect every human being.

Yes, there are some whose current support needs are high, and who deserve that vital quality of care, & the autonomy, enabling of communication and provision of caring teams so that they can truly thrive. Every one of them is a person of full worth.

But, goodness me, how did we ever allow publication of materials suggesting autism is solely a burden on society for life, at some great cost of a £million a child or some such thing?

How did we erase older autistic people from diagnosis, from research, from society's comprehension?

How did we forget all that the older autistic population often bring to society, whether it is honesty, integrity, passionate social justice-seeking, friendship and companionship, or specific skills, deep caring & creativity?

How did we force tens of thousands of older autistic people into hiding, in workplaces, in communities, terrified that any disclosure of diagnosis or identity will mean removal from their post?

How did we create a narrative around autism that was so far distant from reality that so many tens of thousands go without realising they are autistic, decade after decade?

The 'deficit narrative' forces each and every one of us to live only as an incompetent semi-human, powerless and voiceless in society. At best, perhaps, as a walking zoo-exhibit or an example of things-to-be-fixed.

I wish for a world where we move away from the 'deficit narratives' that bring so many to their knees, forcing older autistic people to live as 'asylum inmates' and as alleged 'burdens'. I would like us to be able to consider the endless numbers in our population who have given a lifetime of love, caring, creativity or service to our world and our communities, unacknowledged, unrewarded. There are so many older autistic individuals whose deep expertise, honesty and integrity have served our Professions for decades, and those who are in every way a blessing to us as neighbours, friends and family members.

In autistic societies, we often refer to our older autistic members as Autistic Elders. We look to them for wisdom. We search them out to learn of our history, so often entirely erased other than as a passing mention in a list of acclaimed academics who contributed to the deficit narrative. We seek them out for many of our greatest contributions to academia, to art and poetry, music, literature and faith. We go to them for courage, in bleak times. For hope, when life seems too tough. For caring, when living in a world that too often only cares for us if we can demonstrate sufficient brokenness.

After all, it is in love & community, in belonging & thriving, that we find ourselves whole and fulfilled. That's a future worth striving for, and our older autistic people are a vital part of it.
About the author:
Ann Memmott is an autistic autism adviser & Associate to NDTi. In her fourth year of Post Graduate academic studies, Ann undertakes national and international advisory & training work for a wide variety of clients, including the NHS. Ann is a carer, and as an older autistic person, passionate about giving voice to older autistic individuals of all kinds.

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Autistic Elders: Wisdom and Society - NDTi

# data[].attributes.attachment_link.description
In a world taught to think of autistic people as male children & adolescents, allegedly destined for a lifetime as costly burdens on parents and society, we have arguably lost sight of the majority of autistic people. Recent research shows how many autistic adults are likely to be older, undiagnosed, undiscovered, and almost entirely unexplored in research.

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Older Age Autism Research: A Rapidly Growing Field, but Still a Long Way to Go

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Older Age Autism Research: A Rapidly Growing Field, but Still a Long Way to Go

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David Mason et al.
‘Our review estimates that only 0.4% of autism-related publications over the past decade are about older autistic people. We identify 2012 as a turning point since when the number of studies has markedly increased year-on-year. Encouragingly, the percentage increase in autism research over the past decade is greater for older age research (392% rise) than childhood/early life (196%), adolescence (253%), or adulthood research (264%).’

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Autism, masking and ageing. A personal view.

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Autism, masking and ageing. A personal view.

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Sonia Boué

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A longitudinal study on cognitive aging in autism.  C. Torenvliet, A.P. Groenman, T.A. Radhoe, J.A. Agelink van Rentergem, W.J. Van der Putten, H.M. Geurts. 

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A longitudinal study on cognitive aging in autism.  C. Torenvliet, A.P. Groenman, T.A. Radhoe, J.A. Agelink van Rentergem, W.J. Van der Putten, H.M. Geurts. 

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Based on the current findings, age-related changes in cognition seem similar in autistic- and non-autistic individuals. As this is the first large-scale longitudinal study on cognitive aging in autism, these findings contribute unique knowledge to the autism literature. However, careful interpretation of the current conclusions is essential, and more longitudinal research is key to understand cognitive decline in older autistic adults precisely, and more generally throughout the autistic population. https://www.sciencedirect.com/science/article/pii/S0165178123000161

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Self-harm and Suicidality Experiences of Middle-Age and Older Adults With vs. Without High Autistic Traits

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Self-harm and Suicidality Experiences of Middle-Age and Older Adults With vs. Without High Autistic Traits

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Research taking a dimensional, trait-wise approach to autism is becoming increasingly common as this increases statistical power by including a large number of individuals with high levels of autistic characteristics who nonetheless fall below the diagnostic threshold (or who lack a formal diagnosis). This approach may be particularly useful for exploring autism-related issues in under-studied and under-diagnosed groups, such as older adults (Mason et al., 2022). As support needs often change with age, knowledge about the experiences of self-harm and suicidality in middle-aged and older adults on the autism spectrum could give indications about the support needs for this large and growing population (Stuart-Hamilton et al., 2010). https://link.springer.com/article/10.1007/s10803-022-05595-y

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NASE-949 Free Free Download! Description
s Ageing with autism: a guide for clinicians and health professional
This ebook is an at-a-glance guide to some of the main issues faced by older people with autism, and how you can best support those in your care. It looks at the range of topics including the effects of ageing; the challenges of assessing ageing-related conditions in adults with autism; communicating with people on the spectrum; and managing appointments, check-ups and emergency admissions to hospital. The book is aimed at professionals such as GPs, nurses and hospital staff who do not support adults with autism every day, but may come into regular contact with them.

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Ageing with autism: a guide for clinicians and health professionals This ebook is an at-a-glance guide to some of the main issues faced by older people with autism, and how you can best support those in your care. It looks at the range of topics incl

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Autism: a different way of processing the world

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Autism: a different way of processing the world

# data[].attributes.body
Francesca Happé, Professor of Cognitive Neuroscience at King’s College London, examines how we can better understand autism.
(Includes a brief discussion of autism and ageing.)
https://www.joinexpeditions.com/exps/307?utm_source=t.co&utm_campaign=FrancescaHappé

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EXPeditions - Meet the world's best minds

# data[].attributes.attachment_link.title
Autism: a different way of processing the world

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Francesca Happé, Professor of Cognitive Neuroscience at King's College London, examines how we can better understand autism.

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https://m.youtube.com/watch?v=eoiEZ3g5MlI

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Autism and Aspergers in Older Autistic Adults (60+ Years Old) | Patrons Choice

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Autism, ageing and anxiety (#Twitter thread) @NortherlyRose 

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Autism, ageing and anxiety (#Twitter thread) @NortherlyRose 

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What therapy has taught me (#Twitter thread) @NortherlyRose

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What therapy has taught me (#Twitter thread) @NortherlyRose

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https://twitter.com/northerlyrose/status/1547842307180744705?s=46&t=Q0daEe9hkRBtiLkHRTsfhg

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Presentation for @AutismPractice #ProfConf23 

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‘Last but not least: Later life experiences of autistic people. Rose Matthews                     

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‘Last but not least: Later life experiences of autistic people. Rose Matthews                     

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Why do we know so little about older autistic people, why does it matter, and what can we do about it?

The relative invisibility of older autistic people is apparent in daily life, autism research, and autistic communities.

In a society focused on youth and fitness people are reluctant to consider age-related issues such as disability, death and dying. They are also unaware of the potential joys, satisfactions and compensations of ageing.

This presentation explores autistic ageing in relation to peri/menopause, relationships, and the end of life, using lived experience, research, and autistic accounts to give glimpses of uncharted territory.
Rose Matthews
rosematthewsresearch@gmail.com