# data[].attributes.headline
Site autihub : veille recherche scientifique par les personnes autistes et autres outils

# data[].attributes.subject
Site autihub : veille recherche scientifique par les personnes autistes et autres outils

# data[].attributes.attachment_link.description
AutiHub rassemble des projets citoyens et ouverts consacrés à la participation et à la représentation des personnes autistes dans la production des savoir…

# data[].attributes.headline
Les obstacles à l'accès aux soins et un « triple problème d'empathie » peuvent entraîner des conséquences néfastes pour les adultes autistes : une étude qualitative

# data[].attributes.subject
Les obstacles à l'accès aux soins et un « triple problème d'empathie » peuvent entraîner des conséquences néfastes pour les adultes autistes : une étude qualitative

# data[].attributes.attachment_link.readable_text
Introduction

Autistic people experience and interact with the world differently compared to non-autistic people. Autism is associated with a wide variety of lifelong communication, behaviour and sensory differences ( Royal College of Psychiatrists, 2020). While most clinical research has traditionally focused on autistic children, the majority of autistic people are in fact adults ( Royal College of Psychiatrists, 2020). Despite being key gatekeepers to formal diagnosis, and although there is increasing identification of autistic adults in general, doctors are known to underestimate the amount of autistic people within their patient population ( Zerbo et al., 2015). Due to prevailing stereotypes and a historical tradition of deficit-focused approaches to screening and diagnosis, the majority of autistic adults are indeed likely to be undiagnosed, particularly those without co-occurring intellectual disability ( Brugha et al., 2011). Such stereotypes may be perpetuated through an epistemic injustice, whereby autistic people may not be seen as credible sources of information in the evolving understanding of autism in medical contexts. Epistemic injustice can be defined as 'harms that relate specifically to our status as epistemic agents, whereby our status as knowers, interpreters, and providers of information, is unduly diminished or stifled in a way that undermines the agent's agency and dignity' ( Chapman & Carel, 2022). Centring autistic voices within the evolving research discourse around autistic healthcare may, therefore, be key to producing an ethically sound evidence base that advances social justice and health equity for autistic people ( Kidd et al., 2023).

Realising that you are autistic during adulthood can be a life-affirming experience, following years of conformity to societal expectations and feelings of unvalidated difference ( Stagg, 2019). Achieving this realisation (with or without formal diagnosis) can allow one to begin processing decades of internalised ableism and to flourish as their true self ( Nguyen et al., 2020). Living in a non-autistic world can be highly stressful for autistic people, particularly prior to discovering one's own autistic identity ( Lilley et al., 2022). The impact of chronic stress on wellbeing and mental health is clear. Minority stress theory explains how negative life experiences - such as prejudice, rejection or having to hide one's true identity or mask, for example - can feed into poor mental and physical health, through the cumulative impact of chronic and acute stressors ( Botha & Frost, 2020; Lick et al., 2013). Autistic people are often subject to traumatic experiences and discrimination within current socio-political and environmental expectations/settings ( Griffiths et al., 2019). Such experiences undoubtedly take their toll on wellbeing. In keeping with minority stress theory, autistic people also live with poorer physical and mental health, more co-occurring conditions and on average die younger than non-autistic people ( Doherty et al., 2022; Hirvikoski et al., 2016; Royal College of Psychiatrists, 2020; Wallen et al., 2018). The United Kingdom 2021 National Autism Strategy acknowledged the 16-year mean life expectancy reduction for autistic people ( HM Government, 2021) demonstrated by Hirvikoski et al ( Hirvikoski et al., 2016). Despite this, autistic adults report a litany of barriers to having their healthcare needs met, starting right from the point of initial access ( Doherty et al., 2022). We are more likely to need to use emergency room services, more likely to be admitted when using them and more likely to die during these admissions than non-autistic people ( Vohra et al., 2016). In line with the UK National Health Service's (NHS) constitutional core value that 'Everyone Counts' ( Department of Health and Social Care, 2021), the UK Government has committed to closing the life expectancy gap, to ensure autistic people 'lead full, and happy lives' ( HM Government, 2021). Central to this ambition is tackling the health inequities experienced by autistic people ( HM Government, 2021). This may be achieved through improved understanding by health and care professionals, and through improving other contributory factors, previously reported, such as late presentation of serious illness or under-acknowledged clinical signs by professionals ( Doherty et al., 2021; Haydon et al., 2021).

Multiple studies have described the barriers to healthcare for autistic people ( Mason et al., 2019; Vogan et al., 2017). A recent study of our own also found similar access barriers, and more importantly, correlations with self-reported adverse health outcomes ( Doherty et al., 2022). In this cohort, 80% of autistic respondents reported difficulty accessing a General Practitioner (GP) when required and, most worryingly, over one third of autistic respondents reported not seeking medical help for 'potentially serious or life-threatening' conditions ( Doherty et al., 2022). Several qualitative studies have explored experiences of accessing healthcare from the perspectives of autistic people, their carers or supporters and clinicians ( Calleja et al., 2022; Dern & Sappok, 2016; Mason et al., 2021; Nicolaidis et al., 2015). Factors impacting healthcare access are described at system-level, provider-level and individual-level, which mirror issues faced by autistic people when accessing other services such as education ( Anderson et al., 2018). However, the impact of autistic accounts of healthcare access have yet to result in widespread service improvements. Efforts to improve healthcare access for autistic people require a deep understanding of the factors leading to and the consequences of inaccessible healthcare from the perspective of autistic people. Meaningful understanding of these links from an autistic perspective is, however, lacking in the current literature. Therein lies the importance of this study.

Within this article, we analyse and report the qualitative findings from an international, cross-sectional survey. Our quantitative findings have already been published elsewhere ( Doherty et al., 2022). Our primary aim here was to explore the experiences of autistic adults in relation to healthcare access barriers and self-reported adverse outcomes. As a secondary aim, we hoped to scrutinise the available data for potential deeper meaning, drawing on our insider status, to better understand how healthcare experiences may lead to adverse outcomes for autistic people. No prior studies have focussed on understanding the meaning attributed to experiencing access barriers, nor the ways in which such barriers may be linked to adverse health consequences.

Methods

Participants and data collection

This study is based on pre-existing, previously unanalysed data. This article reports data relating to autistic adult respondents. Both formal diagnosis and self-identity were acceptable. Data were collected using online surveys that explored barriers to primary healthcare and adverse health outcomes for autistic people. The main focus was on experiences of General Practice and with GPs. The final survey itself, including detail on its construction and piloting, is published elsewhere as a quantitative study ( Doherty et al., 2022). This survey recruited participants via social media and an autistic charity website (AsIAm) using a convenience sampling approach ( Doherty et al., 2022). Within this article, we analyse and report the qualitative responses from both the pilot and main surveys. The qualitative options did not change between these two phases of the project, and thus we chose to combine them. Our data were gathered in 2018 and 2019. Table 1 outlines questions with the option for free-form responses, and the number of such responses received.

Table 1. Questions receiving qualitative responses included for analysis.

Survey question

Number of qualitative responses

GP: General Practitioner.

Data analysis

Data were analysed by SCKS and MD over two phases. First, using reflexive thematic analysis, following the approach of Braun and Clarke (2006). SCKS and MD immersed themselves in the data. This was achieved through reading and re-reading. Initial coding was undertaken by a single researcher (SCKS). This was done using the Microsoft Word comments feature. This was verified by MD. SCKS and MD then came together to jointly search for, review and define themes. This was an iterative process, which concluded when both researchers agreed on the final, constructed analysis.

Following this thematic analysis, SCKS and MD stepped beyond this to construct a model that sought to explain the potential links between healthcare experiences and adverse outcomes for autistic people. This approach was grounded in their own insider status as autistic people, as medical doctors, and through having conducted the initial thematic analysis. This was an iterative process where the resulting model was increasingly detailed and refined over numerous versions until both were happy that this reflected their subjective interpretations of the data in the context of their own insider positioning. This innovative process embraced subjectivity and embodied a co-constitutional approach to the generation of this new knowledge ( Flood, 2010). In short, our own experiences were used to provide deeper insight into the reported data, in the search for hidden meaning, embracing a relativist ontology. Similarly, this approached epistemological assumptions from a social constructionist perspective ( Andrews, 2012). Social constructionism proposes that collective human knowledge is created through social interaction ( Harris, 2006). This embraces the subjective nature of individual experiences, beliefs and practices, embedded in our own constructed knowledge ( Shaw, 2021). Taking this stance allowed us to consider both chronology and possible underlying causation more deeply, resulting in the graphical representation of a model.

Ethical approval

This study was approved by the SJH/TUH Research Ethics Committee at Tallaght University Hospital.

Insider positioning/community involvement

This study benefits from an insider approach. Our research team includes autistic individuals from a variety of disciplines. Most of us are medical doctors. This insider perspective was vital to the design and undertaking of this study. As Chown et al. explain, 'it is both epistemologically, as well as ethically, problematic if the autistic voice is not heard in relation to social scientific research seeking to further develop knowledge of autism' ( Chown et al., 2017). There is an epistemological lacuna with autism research that fails to reflect the lived experience of autistic individuals with their insider knowledge. Milton and Bracher stress that equal participation of autistic people will enhance research through increasing its epistemological integrity ( Milton & Bracher, 2013). Autistic academics are increasingly involved in autism research, but most autism research is still undertaken by non-autistic academics. The stigma still attached to autism means that many autistic researchers do not disclose for fear of damage to their careers. For autistic academics to contribute, and to be seen to contribute, to autism research they must be enabled to disclose that they are autistic. All members of this project team are autistic. With the researchers and survey respondents all being autistic, this is a rare example of a fully autistic project.

Results

One thousand two hundred and forty eight autistic adults responded to the surveys. The majority lived in the United Kingdom ( n = 571), followed by the United States ( n = 226) and Ireland ( n = 206). Two hundred and thirteen identified as male, 806 as female and 223 as non-binary. Free comments provided 57,668 words of qualitative data for analysis. Our constructed themes are outlined in Table 2. An overarching meta-theme was also identified - a sense of epistemic injustice. This intangible permeated all other themes. Furthermore, it was particularly integral to our subsequent model. As such, it will be reported at the end of our results.

Table 2. Themes.

Themes

Subthemes

Early barriers

Predictability; environmental challenges; sensory challenges; interoceptive differences.

Communication mismatch

Communication differences; masking; non-manipulation

Doubt - in oneself and from doctors

Self-doubt; the unknown unknown; doctor-patient relationships.

Helplessness and fear

Learned helplessness; fearing repercussions.

Healthcare avoidance and adverse health outcomes

Healthcare avoidance; adverse outcomes; barriers have consequences.

Theme 1: early barriers

Our respondents experienced a wide variety of early barriers to accessing healthcare. In the first instance, some respondents experienced specific challenges interpreting their internal bodily sensations to be able to decide if medical attention was needed. In particular, differences in pain thresholds/interpretation were frequently reported.

Once certain that an appointment was needed, many outlined challenges with contacting healthcare services to make one. Foremost, significant challenges were experienced with making phone calls.

Once an appointment was booked, respondents outlined the additional struggles with attending, including a lack of predictability, not knowing what to expect and sensory overstimulation. For example, some reported the significant barrier of needing to use public transportation to get to their doctor.

These barriers extended into the waiting room environment, which was particularly triggering for many.

Theme 2: communication mismatch

Differences in communication - including both styles and form - were experienced as pervasive issues throughout various aspects of healthcare. Some reported mishaps, anxiety and mistreatment in relation to communication with receptionists.

I struggle with idioms. I was once told to sit tight for a referral letter and said where do you want me to sit, here or in the waiting room. Thing is I had expected the letter to be written after the appointment I was just thrown by the language. Then I felt ashamed like I had appeared demanding.

Receptionist brusque/confusing.

Rude receptionists that don't understand neurodiversity and treat me like garbage.

I've been bullied, abused, gaslit, and mistreated by . . . receptionists at the surgery.

Many also experienced misunderstandings when communicating with doctors and other healthcare staff.

Respondents, therefore, tried to mask their autism, to appear non-autistic, in the hope that they might be taken more seriously.

Eye contact with the doctor stresses me out a lot, but I fear they won't believe me if I'm not making eye contact.

Respondents also acknowledged that autistic people did not know how to confidently manipulate the medical system to meet their needs in the way that non-autistic people might. In some cases, this was directly influenced by the aforementioned communication differences.

To get [an appointment] in 1-7 days you have to . . . charm the receptionist.

In others, this was a more explicit observation.

It feels like trying to balance between 'damaged enough to need help', and 'undamaged enough to be considered reliable'.

Overall, there was also an awareness that being a healthcare professional themselves and understanding the medical settings and language from an insider perspective did not improve these communication mismatches.

[I] often don't know why I'm being so badly misinterpreted and/or misunderstood. After all I'm a nurse.

Theme 3: doubt - in oneself and from doctors

Respondents reported a sense of self-doubt and pre-empted guilt when considering accessing healthcare.

These worries were reinforced by feelings of a lack of understanding about the possible implications of different symptoms.

I ended up with peritonitis from a ruptured appendix because I did not recognise appendicitis symptoms as serious enough to justify making an appointment.

These worries could be overcome through having a positive relationship with their doctor.

A sympathetic and understanding GP means I feel less anxiety at appointments means I will be willing to go to the doctors when needed and means I attend regular screening check-ups.

More respondents, however, experienced more negative relationships with their doctors, which fed into the healthcare barriers experienced.

These negative relationships led to perceived questioning of their credibility as people (an epistemic injustice) and fostered a sense of frustration at their health concerns not being believed. This was felt to be due to being autistic.

This led to concerns of repeated diagnostic overshadowing, where physical health concerns were attributed to their autism or an assumed state of anxiety.

Theme 4: helplessness and fear

Reaching out for help to find none available, compounded by the aforementioned experiences of doubt, left respondents despondent.

The hardest thing about going to the doctor is making the big step of making yourself vulnerable in order to ask for help but often finding help does not come.

Such experiences promoted a sense of helplessness, whereby respondents had learned that the medical system could not, or would not, be able to support their needs.

In some cases, this was compounded by a deep-seated fear of repercussions, should they attempt to seek help from healthcare providers.

Theme 5: healthcare avoidance and adverse health outcomes

Prior negative experiences dissuaded respondents from future contact with healthcare providers.

I feel so disrespected by healthcare professionals that I'd rather suffer at home than set myself up for ridicule.

In some cases, this led to a complete inability to access healthcare.

In some cases, respondents associated this total lack of access with future consequences.

I'm gonna die one day because I didn't go to the doctor because it was so bloody frightening.

More broadly, respondents experienced a vast array of serious and potentially life-threatening medical outcomes. Here, the stark medical consequences speak for themselves without abstracting to our own interpretive narrative.

Due to my difficulty describing my pain and symptoms it led to an undiagnosed . . . tumour nearly crushing my internal organs from its sheer size and needed emergency surgery which removed a melon sized tumor and an ovary.

Heart attack . . . preferred to sit out the chest pain even though it was agonisingly very painful and might have meant death - despite having a known heart condition and previous heart attack . . . the visit to my doctor would be too much more anxiety than could cope with.

I had ovarian torsion and a ruptured ovarian cyst and was in agony and was not believed by ambulance service

I have rheumatoid disease. I saw a Dr. at my college clinic shortly after onset of symptoms but was treated like she didn't believe me . . . [It] has left me with irreversible joint damage.

I got hit by a car and didn't go to the doctor.

I had an ectopic pregnancy and the fallopian tube burst. I was afraid of going to the doctor . . . When I finally went I got transferred to the ER for emergency surgery and they called my next of kin to say I might not come out of the surgery.

I have aortic stenosis and have recently had chest pains. I am afraid . . . afraid to schedule the appt . . . I haven't seen a cardiologist in years.

Some acknowledged the role of healthcare barriers in leading to these outcomes.

It was life threatening and nearly killed me because I was too ill and too disabled to access doctors

How experiences may lead to barriers - an explanatory model (Figure 1)

Figure 1. Our proposed model for explaining the reported barriers to accessing healthcare for autistic adults.

Predictability and routine are important for autistic people. However, seeking healthcare proves to be a highly unpredictable social task. It is necessary to battle busy, chaotic environments, filled with overwhelming sensory overstimulation. This may be compounded by similar environments enroute to the venue - public transport, for example.

Autistic people are known to experience interoceptive differences ( Shaw et al., 2022). For example, many of our respondents reported pain awareness that differed to that which might be expected in non-autistic people - ' because I have a high pain threshold I didn't notice something was wrong until my appendix had ruptured at least 24 hours beforehand'. These differences, in combination with the lack of predictability and the environmental/sensory challenges presented by medical settings, can create a greater communication mismatch between autistic people and doctors. Our respondents reported feeling the need to mask their autism to lessen this mismatch. However, it is well documented that masking is associated with poor mental health outcomes in autistic people ( Mandy, 2019). The interplay of the communication mismatch and actively focusing attention on masking can be highly stressful. Autistic people tend to interpret rules and instructions literally ( Vicente & Falkum, 2023) and may be unaware of the ways in which others might be able to manipulate the healthcare system to access appropriate care. Autistic people attempting to access healthcare may therefore be competing for scarce resources such as appointments with non-autistic people who have an advantage. This was reflected by our respondents. The nature of the doctor-patient relationship therefore becomes key in guiding the outcome of consultations. A positive relationship seemed to lead to increased satisfaction and perceived improved outcomes. A negative doctor-patient relationship, however, resulted in feelings of not being taken seriously and experiences of diagnostic overshadowing - ' they thought my stimming was proof I was " anxious" and all my complaints were psychosomatic'. Over time, this led to learned helpless states, where respondents had developed feelings that the healthcare system was not able to offer them any support. Combining this learned helplessness with fears of repercussions from medical contact seemed to lead to healthcare avoidance - ' I feel so disrespected by healthcare professionals that I'd rather suffer at home than set myself up for ridicule'. Finally, this healthcare avoidance seemed to feed directly into the serious, adverse health outcomes reported by our respondents. As outlined in Figure 1, various stages also seemed to feed directly into healthcare avoidance and/or serious consequences.

Meta-theme: a sense of epistemic injustice

Permeating our entire thematic analysis, and underlying the entire process seen in Figure 1, was a sense of epistemic injustice. In this context, it became clear the respondents felt reduced to a single-dimensional label of autism, and therefore their own thoughts, intelligence and self-awareness were subconsciously considered less valuable or less credible by doctors - ' GPs treat me like a stupid child & assume I don't understand what is being said to me because they know I have autism (I have a PhD!) '.

Discussion

Our findings give voice to the healthcare experiences of autistic people. Following analysis, their stories outline a journey through which healthcare access barriers may lead to adverse health outcomes for autistic people ( Figure 1). The barriers identified were broadly in line with previous studies and centred around patient-provider communication challenges and sensory issues. Adverse outcomes, while self-reported, were in many cases very clearly medically serious - thus demonstrating a plausible association between the subjective difficulties accessing healthcare and the objective healthcare outcomes and premature mortality experienced by autistic people.

A triple empathy problem

Communication and empathic understanding with and from respondents' doctors seemed to play an important role in guiding the self-reported outcomes in our study. A 'key' aspect of psychological models of human social interaction is that people have an innate ability, and/or develop the ability, to understand the mental states of others. This is called theory of mind ( Carlson et al., 2013). The literature on autism is replete with scholars arguing that autistic people have difficulty understanding other minds. There are even examples of scholars who consider that autistic people are unable to empathise at all ( Barnbaum, 2008). Milton argued that the only difficulty autistic people have with empathy and communication is when interacting with non-autistic people and that non-autistic people experience similar difficulty interacting with autistic people ( Milton, 2012). He called this the double empathy problem (also known as cross-neurological theory of mind). Autistic people often develop a greater understanding of non-autistic social interaction than vice versa ( Milton, 2012, 2017). This is because autistic people have no choice but to develop such an understanding to survive in a non-autistic world, whereas non-autistic people do not need to understand autistics. Several studies have produced evidence in support of double empathy/cross-neurological theory of mind ( Crompton et al., 2020; Heasman & Gillespie, 2019; Mitchell et al., 2021).

During our analysis, it became clear that there was a perceived mismatch in communication, understanding, agendas and empathy between respondents and their doctors, which appeared more complicated than, and not fully explained by, the double empathy problem. Many of our respondents referred to matters that demonstrated bi-directional difficulties between themselves and their doctors - some of which we explored within Theme 2 ('communication mismatch'). Autistic people are potentially less likely to infer the meaning of unspoken messages from non-autistic doctors. For example, concern on the part of doctors may often be conveyed non-verbally, so this message may be missed or misinterpreted as nonchalance or even contempt. However, this two-way mismatch did not feel fully representative of the social phenomenon we were witnessing within our data. As such, in relation to healthcare access for autistic adults, we propose that a triple empathy problem was at play.

Considering healthcare delivery more widely, it is common for bi-directional communication difficulties to exist between doctors and patients. It is well known that mismatched communication, understanding and agendas within medical consultations, alongside poor doctor-patient relationships, form barriers to clinical care for all patients, whether autistic or not - leading to reduced standards of care and worse clinical outcomes in the short term ( Hinchey & Jackson, 2011; Mamede et al., 2017; Zhang et al., 2020). This likely stems from the fact that medicine has its own culture, language and practices. Those working within medicine are trained in and spend years experientially learning to join and embody this culture, which would naturally be alien to those external to it. For example, the primary role of a GP is often to rule out serious causes for symptoms, and then to explore common ones ( Foot et al., 2010). Similarly, from an insider perspective on medicine, it is all too common for symptoms to go unexplained beyond this, even following investigation from specialist services. From a non-medical perspective, however, the concept of medically unexplained symptoms, or the lack of explanation, can be highly distressing ( Kirmayer et al., 2004). This can foster tension between GPs and patients in such contexts, be they autistic or not.

The cumulative toll of these cultural and agenda differences, which occur between all patients and their doctors, concurrent to the double empathy problem, seemed to have a particularly strong impact on healthcare experiences and perceived outcomes for our autistic respondents. When autistic respondents described interactions with non-autistic healthcare providers (undoubtedly the majority), this dynamic took on a three-dimensional quality. Therein lies our triple empathy problem ( Figure 2). Patients struggle to see their doctor's perspective, and doctors can also struggle to see their patients' perspectives. For example, when doctors are patients themselves, they experience healthcare with their own medical knowledge. The difficulty is seeing the perspective of a patient without any medical knowledge. Similarly, autistic people struggle to see non-autistic people's perspectives and vice versa. So, it proves even harder for autistic patients to see their (non-autistic) doctor's perspective, and even harder for (non-autistic) doctors to see autistic patients' perspectives. This extension of, and addition to, the double empathy problem is further supported by our finding that respondents with healthcare backgrounds did not report better experiences within healthcare access.

Figure 2. The triple empathy problem.

This triple empathy problem may also be at play when autistic people interact with other professions and services, such as education, social care or the justice system. Future studies might interrogate this dynamic to explore whether autistic people are exposed to systemic disadvantage within other sectors.

Healthcare access and adjustments

While minority stress theory can be used to provide a social explanation for the poorer health experienced by autistic people ( Botha & Frost, 2020), and thus the excess mortality experienced ( Hirvikoski et al., 2016), preventive solutions will require substantial shifts in societal and cultural practices. In the interim, access to healthcare for autistic people is a key consideration both at system-wide and individual practice level. It is imperative that changes be made in medical practice to facilitate good care. Figure 1 highlights some potential areas (the areas in blue, for example) where we might target interventions/changes to improve healthcare access experiences and outcomes for autistic people.

We have used insights gained during this project to develop a simple, memorable framework to enable clinicians to meet the needs of autistic people in healthcare settings. 'Autistic SPACE: a novel framework for meeting the needs of autistic people in healthcare settings' ( Doherty et al., 2023) outlines in detail our suggested accommodations which clinicians can easily adopt for autistic patients in all healthcare settings including general practice. The infographic reproduced here ( Figure 3) incorporates the most common aspects of autistic needs in an easily memorable manner. The acronym 'SPACE' stands for Sensory needs, Predictability, Acceptance, Communication and Empathy - and three further domains of autistic experience where the 'SPACE' principles applied are represented by physical space, processing space and emotional space ( Doherty et al., 2023).

Any practical adjustments must also be accompanied by education of healthcare professionals about the specific needs of autistic patients, the excess morbidity and mortality associated with not meeting these needs and the ways in which the practice changes can benefit autistic patients. This could be done during training, during continued professional development and as practices change their systems to accommodate these needs.

Further, and of equal importance, systems changes and the reasons they have been implemented should be publicised to all patients so that they know what is available and will be encouraged to initiate any needed contact with healthcare resources. In addition, the recruitment of autistic physicians and healthcare professionals could ultimately help to overcome the triple empathy problem that we have described, through the intuitive understanding that comes from their dual insider positioning within the autistic population and within the healthcare system. While many barriers to medical training have been reported by medical students ( Shaw, Doherty, & Anderson, 2023), autistic doctors do indeed report a wide variety of strengths that they bring to their clinical work ( McCowan et al., 2022) - including one study finding that 73% of autistic doctors felt that being autistic was helpful in their clinical work ( Shaw, Fossi, et al., 2023).

Strengths and limitations

As with any study, there are a variety of strengths and limitations to our approach that are important to consider. The findings we report here are qualitative in nature. These results are not assessed for generalisability. However, our philosophical and methodological underpinnings do not seek or claim generalisability. Instead, our findings provide insight into the world of autistic adults trying to access healthcare, advancing knowledge and giving voice to their emotional stories - an epistemological advantage in itself ( Anderson, 2006). It is worth acknowledging here that this study does not include the perspectives of healthcare staff, so only sheds light on one side of these stories. Future studies might benefit from considering the experiences of healthcare staff in relation to treating autistic patients.

Our study also benefits from an insider approach. We are all autistic adults ourselves. Furthermore, six of us are also medical doctors. These insider perspectives helped to provide important insights into the study design and the interpretation of our findings.

It is also important to consider our data collection method as both a potential strength and limitation. Due to its asynchronous, online nature, it is likely that the online survey approach is a more accessible data collection tool for autistic participants. This is an important strength. The resulting very large number of participants also allowed us to identify clear trends in the experiences and stories reported on a larger scale. However, it also leads to the loss of the individual voices and narrow situational context that a smaller sample size provides.

Conclusion

Autistic people report barriers to accessing healthcare. This may well influence our reduced life expectancy and higher rates of co-occurring conditions. Here, our results have given voice to the stories of autistic adults in trying to access healthcare. We have used this exploratory data to build a model, which may offer some insight into the relationship between barriers to access and poor outcomes. While this model is grounded in qualitative data, it opens the avenue to further research in the future - for example, through quantitative study testing such associations. Also grounded in our findings, we have built upon the double empathy problem, suggesting a triple empathy problem may be at play in relation to communication between autistic people and non-autistic doctors in medical settings. This may benefit from the inclusion of more autistic doctors in the medical workforce. This is another area in need of further study. Following our findings, we have also made recommendations for best practice when providing healthcare services for autistic people, such as general practice, and have highlighted the need for autism training in medical curricula.

Acknowledgments

First and foremost, the authors would like to thank those who participated in this study for opening up about their experiences. The authors are also thankful to Prof Louise Gallagher, Elaine McGoldrick and Karen Leneh Buckle for their assistance during this project. In addition, the authors would like to acknowledge the input from the wider autistic community during the development of the survey, including assistance from members of Autistic Doctors International. We are also grateful to participants of Autscape 2022 for discussions on the 'Triple Empathy' concept.

Declaration of conflicting interests

The author(s) declared the following potential conflicts of interest with respect to the research, authorship, and/or publication of this article: SCKS, MJ, NC and MD are all collaborating on research projects at London South Bank University aimed at improving autistic healthcare, funded by the John and Lorna Wing Foundation and NHS England (London region). SCKS, LC, MJ and MD are also all part of the leadership team of Autistic Doctors International.

Funding

The author(s) received no financial support for the research, authorship, and/or publication of this article.

ORCID iDs

Cite

Metrics and citations

View Options

If you have access to journal content via a personal subscription, university, library, employer or society, select from the options below:

Sage Journals profile

NAS members can access this journal content using society membership credentials.

NAS members can access this journal content using society membership credentials.

Alternatively, view purchase options below:

Purchase access

Read with DeepDyve

# data[].attributes.attachment_link.title
Barriers to healthcare and a 'triple empathy problem' may lead to adverse outcomes for autistic adults: A qualitative study - Sebastian CK Shaw, Laura Carravallah, Mona Johnson, Jane O'Sullivan, Nicholas Chown, Stuart Neilson, Mary Doherty, 2024

# data[].attributes.attachment_link.description
Autistic people experience more co-occurring health conditions and, on average, die younger than non-autistic people. Despite growing awareness of health inequities, autistic people still report ba...

# data[].attributes.headline
« Cela m’a montré de quoi je suis capable » : Une exploration des expériences de burn out chez les femmes autistes et les mères

# data[].attributes.subject
« Cela m’a montré de quoi je suis capable » : Une exploration des expériences de burn out chez les femmes autistes et les mères

# data[].attributes.attachment_link.readable_text
Abstract

Background:

Research has highlighted a relationship between autistic motherhood and autistic burnout, although autistic mothers' experiences of autistic burnout have not been explored in depth.

Method:

To address this research gap, we used a participatory approach and a qualitative methodology with the aim of understanding: (1) how autistic mothers experience autistic burnout in relation to their parenting role and (2) what support they need to prevent and recover from this. We recruited 13 autistic mothers via social media to participate in an online semi-structured interview. We analyzed these interviews using inductive reflexive thematic analysis.

Results:

We developed four main themes. Theme 1, "Depletion," focuses on the contributory factors to autistic burnout. Theme 2, "You have to just get up and keep going," demonstrates how autistic mothers continued to care for and maintain their relationships with their children while experiencing autistic burnout. Theme 3, "New realizations," reveals how autistic burnout impacted autistic mothers' self-understanding and self-awareness. Theme 4, "We need support too," discusses the availability and accessibility of support for autistic mothers and their subsequent experiences of this. Findings highlight that autistic mothers' difficulties associated with their autistic burnout are compounded by a lack of autism acceptance and understanding from others, although they felt that burnout did not impact their parenting capacity.

Conclusions:

We provide several recommendations to improve outcomes for autistic mothers, including a need for increased autistic-led training for professionals, and for the development of formal, autistic-led peer support services and community groups.

Community Brief

Why is this an important issue?

Autistic mothers experience a lot of pressures (e.g., social demands), which can be very stressful and might lead to autistic burnout (extreme exhaustion experienced by autistic people that can make it hard for them to think and act). So far, we know very little about the experience of burnout in autistic motherhood. Knowing more could help us put better support in place.

What was the purpose of this study?

We aimed to explore the experience of autistic burnout in motherhood.

What did the researchers do?

We interviewed 13 autistic mothers about their experiences of burnout. Our questions included things such as "how did you first realize you were experiencing autistic burnout?" We used an inductive, reflexive thematic analysis. This is a form of qualitative analysis where researchers look at what people have said and develop common themes (or patterns) across participants.

What were the results of the study?

We developed four main themes. In theme 1, "Depletion," we focused on the things that led to autistic burnout, such as feeling responsible for too many things at home. In theme 2, "You have to just get up and keep going," we explored how autistic mothers continue to care for their children during autistic burnout. In theme 3, "New realizations," we looked at how autistic burnout impacted autistic mothers' self-understanding and self-awareness. In theme 4, "We need support too," we explored where mothers went for support, whether it was helpful, and what would make support better in the future.

What do these findings add to what was already known?

Our findings show how the demands of motherhood might lead to autistic burnout among autistic mothers. We found that some things involved in maternal burnout (e.g., having a lot of things to remember) are the same as in non-autistic mothers, but some aspects of autistic maternal burnout are different (e.g., our mothers reported feeling closer to their children as a result, not more distant).

What are potential weaknesses in the study?

We only interviewed a small number of people. While this is not an issue in qualitative research, it does mean that more research is needed to see whether our findings apply to a larger, more representative group. We did not explore the experiences of parents who do not identify as mothers, and there are likely some unique aspects to these different experiences worth investigating.

How will these findings help autistic adults now or in the future?

Our findings further the understanding of the unique features of autistic burnout and contribute toward a growing evidence base that emphasizes the need for well-resourced autistic community support networks. These networks provide insider understanding and emotional support but are often reliant upon exhausted community members. We suggest that better support would include both professional aid (from well-trained professionals with a solid knowledge of autistic burnout) and community knowledge to ensure more sustainable and effective support for autistic people.

Get full access to this article

View all access and purchase options for this article.

Data availability statement

Data for this project are not openly available.

Authorship Confirmation Statement

A.F. and A.P. designed this study. A.F. collected and analyzed the data, with feedback from D.M. and A.P. A.F. wrote the first draft of the article. A.P. and D.M. provided feedback and edited the article. The article has been submitted solely to Autism in Adulthood.

References

12. Sanchez P. "Against the norm" mothering: A reflexive thematic analysis of autistic motherhood. 2023; 10.18744/LSBU.95443

38. Braun V, Clarke V. One size fits all? What counts as quality practice in (reflexive) thematic analysis? Qual Res Psychol. 2020; 1-25.

41. Hays S. The Cultural Contradictions of Motherhood. Yale University Press; 1996.

Supplemental Material

Please find the following supplemental material available below.

For Open Access articles published under a Creative Commons License, all supplemental material carries the same license as the article it is associated with.

For non-Open Access articles published, all supplemental material carries a non-exclusive license, and permission requests for re-use of supplemental material or any part of supplemental material shall be sent directly to the copyright owner as specified in the copyright notice associated with the article.

sj-docx-1-aua-10.1089_aut.2024.0282 - Supplemental material for "It Has Shown Me How Much I Am Capable Of": An Exploration of Autistic Burnout Experiences in Motherhood

Supplemental material, sj-docx-1-aua-10.1089_aut.2024.0282 for "It Has Shown Me How Much I Am Capable Of": An Exploration of Autistic Burnout Experiences in Motherhood by

Cite

Cite

If you have citation software installed, you can download citation data to the citation manager of your choice

Information, rights and permissions

Information

Published In

Article first published online: November 28, 2024

Issue published: August 1, 2026

Keywords

1. autistic burnout

2. motherhood

3. parenting

4. mental health

Rights and permissions

Request permissions for this article.

Data availability statement

Article versions

You are viewing the most recent version of this article. To download and view previous versions, see below:

November 28, 2024 - online first

Authors

Affiliations

School of Psychology, University of Sunderland, Sunderland, United Kingdom.

School of Psychology, University of Sunderland, Sunderland, United Kingdom.

Centre for Neurodiversity and Development, Department of Psychology, Durham University, Durham, United Kingdom.

Notes

Amy Pearson, PhD, Department of Psychology, Centre for Neurodiversity and Development, Durham University, Durham DL13HE, United Kingdom, [email protected]

Metrics and citations

Metrics

Total views and downloads: 107
*Usage tracking began in December 2016 or upon migration to Sage Journals, whichever is later. Prior usage data was not transferred.

Receive email alerts when this publication is cited

Web of Science: 0

Crossref: 4

View Options

If you have access to journal content via a personal subscription, university, library, employer or society, select from the options below:

Sage Journals profile

I am signed in as:
View my profile Sign out
I can access personal subscriptions, purchases, paired institutional access and free tools such as favourite journals, email alerts and saved searches.

Alternatively, view purchase options below:

Purchase access

Read with DeepDyve

# data[].attributes.attachment_link.title
"It Has Shown Me How Much I Am Capable Of": An Exploration of Autistic Burnout Experiences in Motherhood - Ashton Ferguson, David Martin, Amy Pearson, 2026

# data[].attributes.attachment_link.description
Background: Research has highlighted a relationship between autistic motherhood and autistic burnout, although autistic mothers' experiences of autistic burnout have not been explored in depth.Meth...

# data[].attributes.headline
Avoir toutes ses ressources internes épuisées au-delà de toute mesure 

# data[].attributes.subject
Avoir toutes ses ressources internes épuisées au-delà de toute mesure 

# data[].attributes.attachment_link.title
“Having All of Your Internal Resources Exhausted Beyond Measure and Being Left with No Clean-Up Crew”: Defining Autistic Burnout - PubMed

# data[].attributes.attachment_link.description
Why was this study done?: Autistic burnout is talked about a lot by autistic people but has not been formally addressed by researchers. It is an important issue for the autistic community because it is described as leading to distress; loss of work, school, health, and quality of life; and ev …

# data[].attributes.headline
Prévalence de la victimisation chez les personnes autistes : revue systématique et méta-analyse

# data[].attributes.subject
Prévalence de la victimisation chez les personnes autistes : revue systématique et méta-analyse

# data[].attributes.attachment_link.title
Prevalence of Victimisation in Autistic Individuals: A Systematic Review and Meta-Analysis - Grace Trundle, Katy A. Jones, Danielle Ropar, Vincent Egan, 2023

# data[].attributes.attachment_link.description
Autistic individuals are at an increased risk of experiencing victimisation. Previous reviews have focussed specific types of victimisation. Thus, a clearer pic…

# data[].attributes.headline
Feral feminisms Autisme A/Genres, A/Sexualités et A/Socialités (angl)

# data[].attributes.subject
Feral feminisms Autisme A/Genres, A/Sexualités et A/Socialités (angl)

# data[].attributes.attachment_link.title
feral feminisms » Autistic A/Genders, A/Sexualities, and A/Socialities

# data[].attributes.attachment_link.description
© 2026 Feral Feminisms Publishing Toronto, Canada ISSN 2292-146X

# data[].attributes.headline
Présence sans appartenance : une analyse conceptuelle de la solitude dans l'autisme

# data[].attributes.subject
Présence sans appartenance : une analyse conceptuelle de la solitude dans l'autisme

# data[].attributes.attachment_link.title
Presence without Belonging: A Conceptual Analysis of Loneliness in Autism

# data[].attributes.attachment_link.description
Loneliness is widely reported among autistic adults and is associated with adverse mental health outcomes. However, loneliness in autism is often framed as a consequence of social isolation, reduced social motivation, or individual social difficulty. This paper argues that these framings—while consistent with general loneliness models—overlook a central feature of autistic loneliness: it frequently occurs amid ongoing social participation. Drawing on belonging theory, neurodiversity scholarship, epistemic justice, minority stress, and broader loneliness frameworks, this conceptual analysis introduces the Presence Without Belonging (PWB) framework. PWB distinguishes social presence from belonging and identifies three conditions required for belonging: recognition (being understood and taken seriously as a social subject), access (participation without extraordinary communicative, sensory, or temporal effort), and sustainability (participation that can be maintained over time without disproportionate cumulative cost). When one or more conditions is absent, participation may persist without belonging, producing loneliness despite contact. By reframing loneliness as a relational and structural outcome rather than an individual deficit, this analysis provides a foundation for more precise measurement, more accurate clinical formulation, and more responsible approaches to inclusion.

# data[].attributes.headline
Définir l’épanouissement autistique : explorer les expériences vécues à travers le prisme de la neurodivergence

# data[].attributes.subject
Définir l’épanouissement autistique : explorer les expériences vécues à travers le prisme de la neurodivergence

# data[].attributes.attachment_link.title
Defining Autistic Flourishing: Exploring Lived Experiences through a Neurodivergent Lens - Åsa Hedlund, Therese Lindström, Sven Bölte, Melissa H. Black, Tatja Hirvikoski, Kajsa Isakson, Danielle Unéus, Cecilia Ingard, Jonas Wik, Hanna Bertilsdotter Rosqvist, 2026

# data[].attributes.attachment_link.description
Background: Autism has historically been conceptualized in ways that exclude the possibility of flourishing or a “good life.” However, shifts in our understandi…

# data[].attributes.attachment_link.title
L’autisme invisible n’existe pas, mais ce n’est pas ce que vous pensez - Le blog de Petite Loutre

# data[].attributes.attachment_link.description
retour sur la polémique du surdiagnostic d’autisme et du masking L’autisme invisible n’existe pas, mais ce n’est pas ce que vous pensez

# data[].attributes.attachment_link.title
Autisme : les désillusions du diagnostic tardif, ou le deuil d’une société accueillante - Le blog de Petite Loutre

# data[].attributes.attachment_link.description
Pour les adultes autistes, le diagnostic officiel est souvent vécu comme un espoir de réparation. Et si cette promesse relevait en partie du mythe ? Retour sur les désillusions qui suivent le diagnostic tardif.

# data[].attributes.attachment_link.readable_text
Longtemps absent des publications scientifiques, le burnout autistique est aujourd'hui de plus en plus étudié. Même s'il ne constitue pas un diagnostic médical, il est reconnu comme une expérience largement partagée par de nombreuses personnes autistes, et fait l'objet d'un intérêt croissant.
Comment le définir ? En quoi se distingue-t-il d'une dépression, d'un burnout professionnel ou d'un shutdown ? Quels sont ses symptômes et comment favoriser le rétablissement ? On fait le point !

Infographie

Les informations essentielles à retenir sur le burnout autistique. Explications détaillées dans la suite de l'article.

Attention : les créations présentes sur ce site sont soumises au droit d'auteur. L'utilisation pour votre usage personnel est autorisé, mais aucune modification sans autorisation préalable de l'auteure n'est permise. Pour toute autre utilisation que personnelle, me contacter. Merci, en règle générale, de respecter le travail d'autrui.

Définition

Le burn out autistique résulte d'un stress chronique et d'un décalage entre les attentes et les capacités, sans soutien adéquat. Il se caractérise par un épuisement général et prolongé (plus de trois mois), une perte de fonctions et une tolérance réduite aux stimuli.

Contrairement au burnout professionnel, qui bénéficie d'une reconnaissance dans les risques psychosociaux, le burnout autistique n'est pas un diagnostic médical officiel. Il n'apparaît ni dans la CIM de l'OMS, ni dans le DSM. Il n'existe pas de critère diagnostique permettant à un professionnel de santé de poser un diagnostic de burnout autistique. C'est l'expérience rapportée des personnes autistes qui permet d'en définir les symptômes les plus courants.

Facteurs de risque

Les facteurs de risque sont l'ensemble des éléments qui augmentent les chances de rencontrer un problème de santé. Certains sont modifiables - on peut agir dessus - d'autres non.

Dans le burn out autistique, la plupart des facteurs de risque sont modifiables, mais avec plus ou moins de facilité, car ils dépendent plus de l'environnement de la personne que de son comportement : proches, conditions de logement ou de travail, gestion du quotidien, charge mentale...

Masking social

Attentes excessives

Manque de reconnaissance des besoins

Manque d'aménagements

Manque de soutien

Possibilités de repos trop limitées

Changement majeur, perte de repères

Troubles du sommeil, stress prolongé

Cumul de problématiques

Parentalité complexe

Signes d'alerte

Le burnout autistique est régulièrement décrit comme un phénomène d'arrivée brutale : un jour, la personne n'arrive plus à fonctionner. Contrairement aux représentations, cet effondrement est précédé de signaux d'alerte, trop souvent interprétés comme des difficultés ponctuelles à surmonter, par l'entourage comme par la personne elle-même.

Parfois, les conditions de vie ne permettent que très peu d'adapter l'environnement ou les charges qui pèsent sur la personne, en particulier dans les situations de parentalité (encore plus solo), de précarité et/ou d'appartenance à un groupe social minorisé.

Augmentation sensible de la fatigue cognitive,

Augmentation des hypersensibilités,

Augmentation des stéréotypies

Augmentation des temps de récupération, en fréquence et en durée,

Multiplication des shutdown et/ou meltdown.

Ces signes indiquent que l'équilibre entre les contraintes imposées et les ressources disponibles est en train de se rompre. Dans l'idéal, c'est le moment où il faudrait mettre en place des adaptations pour se protéger de toute aggravation.

Le burnout autistique ne se manifeste pas de la même manière chez toutes les personnes. Son intensité et ses conséquences varient en fonction de plusieurs facteurs, comme le niveau de soutien ou les contraintes de l'environnement. Ces manifestations sont les plus fréquemment rapportées par les personnes concernées.

Epuisement total et durable (3 mois ou plus),

perte de capacités cognitives,

perte ou régression de compétences acquises,

difficultés accrues à gérer les tâches du quotidien,

intolérance aux stimuli sensoriels,

difficultés de communication,

brouillard cérébral, mutisme, apathie,

retrait social significatif,

besoin de récupération prolongé, voire inefficacité des temps de récupération.

Les fonctions exécutives sont particulièrement impactées. Le burnout autistique s'inscrit dans la durée. Les personnes concernées décrivent un état qui persiste plusieurs mois, voire plusieurs années. Certaines rapportent une évolution fluctuante, alternant des périodes d'amélioration et de rechute, sans retrouver leur niveau de fonctionnement antérieur.

En l'absence de critères diagnostiques consensuels, il est difficile de déterminer ce qui relève d'un burnout autistique. Les recherches s'accordent majoritairement sur une durée minimale d'environ trois mois. Elles montrent que le rétablissement est variable d'une personne à l'autre, en termes de durée et de qualité de récupération. Certaines personnes retrouvent progressivement leur niveau de fonctionnement initial, d'autres conservent durablement des limitations, ou doivent adapter leur mode de vie pour prévenir toute rechute.

Facteurs de protection

Les facteurs de protection sont, à l'inverse des facteurs de risque, l'ensemble des éléments qui diminuent les chances de rencontrer un problème de santé. Dans le burn out autistique, le respect personnalisé des besoins est un élément majeur.

Acceptation

Prise en compte effective et adaptée des besoins

Aide et soutien concrets

Environnement adapté

Investissement dans les Intérêts Spécifiques

Repos réparateur régulier

Appartenance et ressources communautaires

Se rétablir du burn out autistique

IL N'EXISTE PAS DE METHODE MIRACLE POUR SE RETABLIR*.
À ce jour, il n'existe pas de traitement médical ou de thérapie spécifique au burnout autistique. La stratégie est d' agir sur les facteurs qui ont conduit à l'épuisement. Elle se décline donc différemment pour chaque personne.

*Fuyez celles et ceux qui essayent de vendre des programmes ou des méthodes magiques, vous n'avez pas besoin d'être arnaqué·es en plus du reste.

Réduire la surcharge

Diminuer autant que possible les sources de surcharge. Selon les situations et les possibilités, on peut envisager :

arrêt de travail

aménagements conséquents

réduction (voire arrêt ponctuel) des sollicitations sociales

allègement des contraintes du quotidien

attention portée aux particularités sensorielles

...

Sans limitation de durée, qui serait source de pression à retrouver un fonctionnement normal ou à minimiser son état.

Être soi-même (et autiste)

Réduire les efforts de compensation délétères :

diminution du masking

stimming

temps consacré aux intérêts spécifiques

...

L'objectif est de sortir de la logique où l'adaptation sociale se fait systématiquement au détriment de la santé.

Obtenir et accepter le soutien

Lorsqu'il est possible, le soutien des proches est un facteur important du rétablissement. Les personnes concernées rapportent des expériences positives :

compréhension de l'entourage

soutien concret (tâches quotidiennes...)

réassurance

Rejoindre un espace communautaire en ligne est aussi bénéfique. Certaines personnes ne peuvent avoir accès à soutiens, pour d'autres, le plus difficile est d'accepter - d'avoir des besoins plus importants, ou que des proches leurs consacrent de l'énergie ou du temps.

Un accompagnement psychologique peut être envisagé, s'il vise à soutenir la personne plutôt qu'à l'inciter à retrouver au plus vite son fonctionnement antérieur (viser de préférence un·e pro qui connait l'autisme).

Comprendre la variabilité

Le rétablissement est rarement linéaire. Beaucoup de personnes décrivent une évolution faite d'améliorations, de rechutes et de périodes de stagnation. Cette variabilité ne signifie pas que la récupération est impossible. Même si c'est particulièrement difficile à vivre, le comprendre aide à garder l'espoir d'un mieux être.

Ne pas revenir en arrière

Il est légitime d'espérer récupérer ses capacités de fonctionnement, mais les mettre au service des mêmes exigences et du même rythme de vie expose à un risque de rechute.

Le burnout invite à repenser l'équilibre entre les contraintes du quotidien et les ressources dont on dispose. Cela peut impliquer de modifier certaines habitudes, de revoir ses priorités. Ces choix parfois difficiles sont une condition nécessaire pour construire un mode de vie plus soutenable à long terme.

Petit pense bête des choses qui nous font du bien :

Attention : les créations présentes sur ce site sont soumises au droit d'auteur. L'utilisation pour votre usage personnel est autorisé, mais aucune modification sans autorisation préalable de l'auteure n'est permise. Pour toute autre utilisation que personnelle, me contacter. Merci, en règle générale, de respecter le travail d'autrui.

Différentiel du BOA

Le diagnostic différentiel consiste à déterminer quel trouble explique le mieux les symptômes observés, lorsque plusieurs problématiques de santé présentent des manifestations proches.

Dépression

Le burnout autistique n'est pas une dépression, même si certains symptômes sont partagés (fatigue intense, difficultés de concentration, retrait social). Ils ne répondent pas aux mêmes mécanismes et n'impliquent pas les mêmes besoins.

L'une des différences les plus marquante est le rapport aux activités plaisantes. Dans une dépression, la personne perd l'intérêt ou le plaisir qu'elle éprouvait pour ses loisirs, ses passions ou ses relations. Dans le burnout autistique, cet intérêt est conservé. Ce qui fait défaut n'est pas l'envie, mais les ressources nécessaires : l'énergie physique, les capacités cognitives ou la tolérance aux stimulations ne permettent plus de s'investir dans des activités désirées.

Le retrait social est une différence importante. Dans la dépression, l'isolement est considéré comme un symptôme à limiter progressivement, les approches thérapeutiques encourageant une reprise des interactions. À l'inverse, dans le burnout autistique, la réduction des sollicitations sociales est un besoin légitime et indispensable au rétablissement, même s'il est difficile à vivre.

Lorsqu'un burnout autistique est interprété comme une dépression, les recommandations peuvent aller à l'encontre des besoins, comme encourager à multiplier les sorties, les activités ou les interactions sociales. Confondre ces deux situations risque de retarder l'identification du burnout autistique et de prolonger ou aggraver l'épuisement.

Attention, un burn out autistique peut amener une dépression, encore plus si

il est mal identifié, confondu avec une autre problématique

il n'est pas pris en charge, ou pas pris au sérieux

le rétablissement est long

la personne concernée n'a pas accès au soutien nécessaire.

Les risques liés à la dépression (altération de l'état de santé générale, automutilations, idéation suicidaires...) s'ajoutent alors aux risques inhérents au burn out autistique.

Burn out " classique "

Le burnout autistique partage certains points communs avec d'autres formes de burnout. Qu'il soit professionnel, parental, militant ou lié au rôle d'aidant, le mécanisme est similaire : un déséquilibre durable entre les ressources d'une personne et les contraintes auxquelles elle est confrontée.

Dans un burnout professionnel, la source de l'épuisement est liée au travail, dans un burnout parental, elle découle des responsabilités associées à l'éducation des enfants, un burnout militant résulte d'un engagement intense face à des situations de violence, d'injustice ou d'urgence permanente, etc.

Le burnout autistique ne se limite à aucun domaine particulier de la vie. Le travail (ou autre) peut contribuer à cet épuisement, mais il n'est qu'une composante parmi d'autres. Un burnout professionnel est soulagé par un arrêt de travail ou un changement d'emploi (moyennant un temps de repos adéquat). Ces mesures ne sont pas suffisantes pour un burnout autistique.

Attention, une personne autiste peut simultanément vivre un burnout professionnel et autistique. Les exigences de son travail peuvent être un facteur ayant conduit à l'effondrement, en s'ajoutant à une accumulation de contraintes présentes dans les autres sphères de sa vie.

Shutdown et meltdown

Le burnout autistique, le meltdown et le shutdown sont liés à un état de surcharge. Le meltdown et le shutdown sont des réponses aiguës et ponctuelles du système face à une situation insupportable. Le burnout autistique relève d'un mécanisme différent. Il ne s'agit pas d'une crise ponctuelle, mais d'un état d'épuisement profond et durable. Il persiste plusieurs mois, voire plus.

Ces phénomènes ne sont pas indépendants les uns des autres. Une personne en burnout autistique peut voir les meltdowns et/ou shutdowns devenir plus fréquents, plus intenses, ou voir son seuil de tolérance aux stimuli réduit.

Des meltdowns ou des shutdowns répétés à un rythme inhabituel sont des signaux d'alerte. Le BOA montre que cette surcharge est devenue chronique et que les aménagements mis en place ne suffisent pas.

En savoir plus sur le shutdown et le meltdown :

Pour de nombreuses personnes autistes, le burnout s'ajoute à un parcours compliqué de diagnostics erronés et de besoins minimisés. Un burnout mal identifié confirme l'expérience d'un système de soins qui ne sait pas prendre en compte les spécificités de l'autisme.

Même si le burnout autistique ne bénéficie pas encore d'une reconnaissance dans les classifications médicales, les travaux de ces dernières années contribuent à définir ses caractéristiques. Mieux le connaître est important, pour éviter les erreurs diagnostiques et les prises en charge inadaptées, mais aussi pour permettre aux personnes concernées de reconnaître les signes annonciateurs et mettre en place des actes de prévention. Reste à faire évoluer les pratiques professionnelles, les politiques publiques et les représentations sociales (c'est pas gagné, soyons honnêtes).

Sources
Épuisement autistique : une perspective fondée sur l'expérience vécue Le burnout autistique : définition, caractéristiques et impact Burn-out autistique : symptômes, causes et récupération Confirming the nature of autistic burnout
Tu peux faire un don pour soutenir mon travail ❤️

Rejoignez les 2 548 autres abonnés

# data[].attributes.attachment_link.title
Comprendre le burnout autistique : symptômes et facteurs clés - Le blog de Petite Loutre

# data[].attributes.attachment_link.description
Burnout autistique : définition, symptômes , risques et conseils pour le rétablissement. Le blog de Petite Loutre

# data[].attributes.headline
Handicap et soins gynécologiques, avec Béatrice Idiard-Chamois - webinaire

# data[].attributes.subject
Handicap et soins gynécologiques, avec Béatrice Idiard-Chamois - webinaire

# data[].attributes.attachment_link.authors[].name
Association Nationale des Sages-Femmes Libérales

# data[].attributes.attachment_link.title
[Webinaire] Handicap et soins gynécologiques, avec Béatrice Idiard-Chamois

# data[].attributes.headline
Les femmes autistes racontent...TSA et parentalité

# data[].attributes.subject
Les femmes autistes racontent...TSA et parentalité

# data[].attributes.headline
Comment les services de maternité accompagnent-ils actuellement les femmes autistes et les personnes qui accouchent ? Quelles améliorations pourraient être apportées pour aider les personnes autistes enceintes et qui accouchent, ainsi que le personnel qui les soutient ?

# data[].attributes.subject
Comment les services de maternité accompagnent-ils actuellement les femmes autistes et les personnes qui accouchent ? Quelles améliorations pourraient être apportées pour aider les personnes autistes enceintes et qui accouchent, ainsi que le personnel qui les soutient ?

# data[].attributes.body
Février 2023

# data[].attributes.headline
Problèmes périnatals chez les femmes atteintes d'un trouble du spectre autistique de haut niveau

# data[].attributes.subject
Problèmes périnatals chez les femmes atteintes d'un trouble du spectre autistique de haut niveau

# data[].attributes.attachment_link.description
Please confirm you are a human by completing the captcha challenge below.

# data[].attributes.headline
The unexpected plus of parenting with autism

# data[].attributes.subject
The unexpected plus of parenting with autism

# data[].attributes.attachment_link.provider_name
The Transmitter: Neuroscience News and Perspectives

# data[].attributes.attachment_link.title
The unexpected plus of parenting with autism

# data[].attributes.attachment_link.description
Having autism as a parent might seem impossibly challenging. But a generation of parents with the condition is showing that it can be an advantage — even when their child does not share the diagnosis.

# data[].attributes.body
SOUPAPE

# data[].attributes.headline
Autisme et grossesse: comment améliorer les expériences de soins de grossesse pour les femmes autistes

# data[].attributes.subject
Autisme et grossesse: comment améliorer les expériences de soins de grossesse pour les femmes autistes

# data[].attributes.attachment_link.title
Autisme et grossesse: comment améliorer les expériences de soins de grossesse pour les femmes autistes

# data[].attributes.attachment_link.description
Que nous dit la recherche sur les résultats de la grossesse et les expériences des femmes autistes ? Dans ce webinaire, une auto-intervenante autiste parle de ses expériences. Ensuite, trois chercheurs discutent de leurs recherches sur la santé périnatale des femmes autistes, de la préconception au post-partum.

# data[].attributes.headline
Expériences périnatales des personnes autistes II : Une enquête sur les expériences liées à l'accouchement et à la période postnatale

# data[].attributes.subject
Expériences périnatales des personnes autistes II : Une enquête sur les expériences liées à l'accouchement et à la période postnatale

# data[].attributes.attachment_link.title
Autistic People’s Perinatal Experiences II: A Survey of Childbirth and Postnatal Experiences - Journal of Autism and Developmental Disorders

# data[].attributes.attachment_link.description
Qualitative accounts indicate there are sensory and communication related barriers to adequate childbirth and postnatal healthcare for autistic people. However, little quantitative work has explored the topic. This online survey study explored childbirth and postnatal experiences among 384 autistic and 492 non-autistic people. Compared with non-autistic people, autistic people were more likely to find the sensory aspects of birth overwhelming, and experienced lower satisfaction with birth-related and postnatal healthcare. Autistic people were more likely to experience postnatal depression and anxiety. The findings highlight that sensory and communication adjustments should be made to birth and postnatal healthcare for autistic people. The findings indicate the need for greater autism understanding among professionals and greater postnatal mental health support for autistic people.

# data[].attributes.headline
Expériences périnatales des personnes autistes I : Une enquête sur les expériences de grossesse

# data[].attributes.subject
Expériences périnatales des personnes autistes I : Une enquête sur les expériences de grossesse

# data[].attributes.attachment_link.title
Autistic People’s Perinatal Experiences I: A Survey of Pregnancy Experiences - Journal of Autism and Developmental Disorders

# data[].attributes.attachment_link.description
Qualitative studies of autistic people’s pregnancy experiences have indicated sensory and communication related barriers to accessing adequate prenatal healthcare. However, quantitative work on the topic is scarce. This online survey study explored pregnancy experiences among 417 autistic and 524 non-autistic people. Compared with non-autistic people, autistic people reported heightened sensory and physical experiences during pregnancy and were more likely to experience prenatal depression and anxiety. Autistic people experienced lower satisfaction with prenatal healthcare, including having lower perceptions of their relationships with healthcare professionals and greater difficulties with antenatal classes. This study identifies key adjustments that can be made to prenatal healthcare, including sensory and communication adjustments. The findings highlight the need for greater autism understanding and awareness among professionals.

# data[].attributes.headline
« Oui, je peux créer des liens. » Réflexions de femmes autistes sur leur expérience de la maternité en début de période post-partum.

# data[].attributes.subject
« Oui, je peux créer des liens. » Réflexions de femmes autistes sur leur expérience de la maternité en début de période post-partum.

# data[].attributes.headline
Grossesse chez les femmes autistes et considérations médico-sociales : revue exploratoire et méta-synthèse

# data[].attributes.subject
Grossesse chez les femmes autistes et considérations médico-sociales : revue exploratoire et méta-synthèse

# data[].attributes.attachment_link.title
Frontiers | Pregnancy in autistic women and social medical considerations: scoping review and meta- synthesis

# data[].attributes.attachment_link.description
This article addresses a topic that has been largely overlooked by scientific literature, namely pregnancy in autistic women. Generally, the issue of sexuali…

# data[].attributes.headline
Les Femmes Autistes Racontent... La grossesse

# data[].attributes.subject
Les Femmes Autistes Racontent... La grossesse

# data[].attributes.headline
Une étude comparative de l'expérience de la maternité chez les femmes autistes et non autistes

# data[].attributes.subject
Une étude comparative de l'expérience de la maternité chez les femmes autistes et non autistes

# data[].attributes.attachment_link.title
A comparative study of autistic and non-autistic women’s experience of motherhood - Molecular Autism

# data[].attributes.attachment_link.description
Background Autism is a lifelong neurodevelopmental difference and disability, yet there is limited research examining parenting in autistic mothers. Objective To explore autistic mothers’ experience of the perinatal period and parenthood. This includes pregnancy, childbirth, the postpartum period, self-perception of parenting strengths and weaknesses, communication with professionals in relation to one’s child, mental health difficulties and the social experience of motherhood. It also includes disclosing one’s diagnosis of autism in parenting contexts. Methods We used a community-based participatory research model, and recruited an advisory panel, with whom we co-developed an anonymous, online survey for autistic mothers. The online survey was completed by autistic and non-autistic mothers, and we compared their responses using Chi-squared analysis. Sample Autistic mothers (n = 355), and non-autistic mothers (n = 132), each of whom had at least one autistic child, were included in our final analysis. Results There were differences in education, gender identity and age of mother at birth of first child. Autistic mothers were more likely to have experienced additional psychiatric conditions, including pre- or post-partum depression, and reported greater difficulties in areas such as multi-tasking, coping with domestic responsibilities and creating social opportunities for their child. They were also more likely to report feeling misunderstood by professionals, and reported greater anxiety, higher rates of selective mutism, and not knowing which details were appropriate to share with professionals. They were also more likely to find motherhood an isolating experience, to worry about others judging their parenting, or feel unable to turn to others for support in parenting. However, despite these challenges, autistic mothers were able to act in the best interest of their child, putting their child’s needs first. Conclusions Autistic mothers face unique challenges and the stigma associated with autism may further exacerbate communication difficulties. Greater understanding and acceptance amongst individuals who interact with autistic mothers is needed, and autistic mothers would benefit from additional and better-tailored support.

# data[].attributes.headline
Vous n'avez jamais vu d'adulte autiste non traumatisé. Moi non plus.

# data[].attributes.subject
Vous n'avez jamais vu d'adulte autiste non traumatisé. Moi non plus.

# data[].attributes.attachment_link.title
Hub RdR - Connecter la réduction des risques

# data[].attributes.attachment_link.description
L’écosystème numérique centralisé pour les usagers, intervenants et acteurs de la réduction des risques.

# data[].attributes.headline
Guide sur la santé menstruelle des personnes trans

# data[].attributes.subject
Guide sur la santé menstruelle des personnes trans

# data[].attributes.headline
Astuces cuisine quand c'est pas la forme

# data[].attributes.subject
Astuces cuisine quand c'est pas la forme

# data[].attributes.attachment_link.title
la dépression c'est pas de la tarte - recettes pour faciliter le quotidien.pdf

# data[].attributes.headline
Développer des stratégies pour regagner du pouvoir lors des échanges avec mon psychiatre (surtout médication)

# data[].attributes.subject
Développer des stratégies pour regagner du pouvoir lors des échanges avec mon psychiatre (surtout médication)

# data[].attributes.headline
Faire le point sur les oppressions subies

# data[].attributes.subject
Faire le point sur les oppressions subies

# data[].attributes.attachment_link.title
Folie et oppression, The Icarus Project - NB - format pleine page.pdf

# data[].attributes.headline
Soutenir un·e survivante·e d'agression sexuelle

# data[].attributes.subject
Soutenir un·e survivante·e d'agression sexuelle

# data[].attributes.attachment_link.title
Soutenir un-e survivant-es d'agression sexuelle - format pleine page.pdf

# data[].attributes.headline
Traverser au mieux une crise (idéation suicidaire - dépression)

# data[].attributes.subject
Traverser au mieux une crise (idéation suicidaire - dépression)

# data[].attributes.attachment_link.title
Traverser au mieux une crise - the Icarus Project - format prêt à imprimer.pdf

# data[].attributes.attachment_link.title
Avriloween, #TousEnBleu ou tout nos bleus

# data[].attributes.attachment_link.description
Salut, je suis autiste, et je déteste le 2 avril. Et dans la foulée, tout le mois d’avril. D’habitude je me cache en rageant dans mon coin, mais cette année j’ai pas envie. Le 2 a…

# data[].attributes.headline
TDAH et RQTH : du rêve d'inclusion à la désintégration

# data[].attributes.subject
TDAH et RQTH : du rêve d'inclusion à la désintégration

# data[].attributes.attachment_link.title
TDAH et RQTH : Du rêve d’inclusion à la désintégration

# data[].attributes.attachment_link.description
Témoignage – En ce doux mois d’avril, au moment où la DI-TND nous vend un guide sur la “neurodiversité en entreprise”, des personnes se battent pour travailler dans des conditions digne…

# data[].attributes.headline
Guide de survie pour les couples autiste/non autiste

# data[].attributes.subject
Guide de survie pour les couples autiste/non autiste

# data[].attributes.attachment_link.provider_name
Droit Pluriel - Pour une société inclusive

# data[].attributes.attachment_link.authors[].name
Droit Pluriel - Pour une société inclusive

# data[].attributes.attachment_link.description
Droit Pluriel est une association reconnue d’intérêt général qui œuvre pour une justice accessible à tous.

# data[].attributes.headline
Autisme et CMI, question au gouvernement

# data[].attributes.subject
Autisme et CMI, question au gouvernement

# data[].attributes.attachment_link.description
Question écrite n° 6148 : Attribution de la CMI mention priorité

# data[].attributes.headline
Jungle - Une traversée de l’autisme au féminin

# data[].attributes.subject
Jungle - Une traversée de l’autisme au féminin

# data[].attributes.attachment_link.title
La Ville Brûle - Jungle - Une traversée de l’autisme au féminin

# data[].attributes.headline
Les couples ont tendance à partager les mêmes troubles psy

# data[].attributes.subject
Les couples ont tendance à partager les mêmes troubles psy

# data[].attributes.attachment_link.description
Pokémon Sleep est un jeu qui vous permet de mesurer et d’enregistrer votre sommeil en plaçant simplement votre appareil mobile près de votre oreiller*. Découvrez les diverses manières de dormir des Pokémon en trouvant votre meilleur sommeil !　Pour éviter la surchauffe, ne placez pas votre appareil sous un oreiller ou sous une couette.

# data[].attributes.headline
Intégrer au mieux une personne autiste en entreprise

# data[].attributes.subject
Intégrer au mieux une personne autiste en entreprise

# data[].attributes.attachment_link.title
Comment intégrer au mieux une personne autiste en entreprise (Angi Guyard)

# data[].attributes.headline
Intégration des personnes autistes au travail

# data[].attributes.subject
Intégration des personnes autistes au travail

# data[].attributes.attachment_link.title
Au secours ! Ils ont recruté Sheldon, Shaun et Raymond - Véronique Sermage

# data[].attributes.headline
Qui consulter en cas de problème au travail ?

# data[].attributes.subject
Qui consulter en cas de problème au travail ?

# data[].attributes.attachment_link.description
Aspie-Friendly est un programme d’inclusion pour les personnes autistes à l’université et dans l’enseignement supérieur

# data[].attributes.headline
Indécision vocationnelle des adolescent·es et jeunes adultes avec un trouble du spectre de l’autisme : revue de la littérature

# data[].attributes.subject
Indécision vocationnelle des adolescent·es et jeunes adultes avec un trouble du spectre de l’autisme : revue de la littérature

# data[].attributes.attachment_link.title
Indécision vocationnelle des adolescent·es et jeunes adultes avec u...

# data[].attributes.attachment_link.description
Introduction Le trouble du spectre de l’autisme (TSA) est un trouble du neurodéveloppement (TND) caractérisé par des difficultés dans la communication et les relations interpersonnelles, des intérê…

# data[].attributes.headline
Des outils pour expliquer aux proches comment s'adapter

# data[].attributes.subject
Des outils pour expliquer aux proches comment s'adapter

# data[].attributes.attachment_link.readable_text
Quand on est autiste, la fin d'année peut vite tourner au survival game. On vend les fêtes comme un moment de joie, de partage et de lumière. Pour nous, c'est surtout un marathon sensoriel sous stroboscope. Pièces bondées, discussions croisées, nourriture imposée, câlins obligatoires...Entre obligations familiales et amitiés à préserver, le parcours est souvent rude. Cet article propose quelques outils concrets pour communiquer avec les proches lors de la préparation des évènements, pour soi-même ou pour son enfant.

L'une des premières difficultés lorsqu'on a des besoins spécifiques, c'est souvent la culpabilité. Une petite voix intérieure qui susurre tu exagères, tout le monde fait un effort, c'est juste une soirée, tu pourrais essayer d'être normal·e pour une fois...Cette voix n'est pas si intérieure que ça. Elle vient de la pression des injonctions sociales, qui impose à toute personne différente de se fondre dans la masse en s'asseyant sur ses besoins. Face à cette pression, l'idée même que les autres puissent s'adapter paraît contre-nature.

En réalité, il ne devrait même pas être question de handicap, de maladie ou de particularité pour que chacun·e accepte de s'adapter aux gens qui l'entourent, et encore moins dans un contexte festif. La différence, c'est que certaines personnes ont une possibilité pas trop coûteuse de faire avec, alors que d'autres ne l'ont pas.

Se sentir légitime, c'est la première étape. Elle demande de déconstruire un conditionnement, de se rappeler qu'avoir des besoins est naturel, et que réclamer des adaptations, c'est rétablir l'équilibre : Si tout le monde est d'accord pour passer un moment festif, alors faisons en sorte que ce moment puisse être une fête pour toustes.

Pratiquer le " non préventif "

Le non préventif, c'est dire non à une demande avant qu'elle ne soit formulée.
Exemples de non préventifs pour soi-même
Dire non à une proposition d'activité, c'est toujours compliqué. On a l'impression de gêner, d'être rabat-joie, et dans beaucoup de situations, on n'ose pas. Le non préventif est plus simple à utiliser : il ne se heurte pas à une demande déjà formulée par un·e interlocuteurice, mais définit des limites à l'avance. Il permet à la fois d'avertir, et de réagir face à une demande imprévue par des rappels, plutôt que par une opposition frontale.
Exemples de non préventifs pour un·e proche

Pour info, je participerai mais je ne prendrai pas part au jeu prévu

Je ne pourrai pas rester longtemps, je préfère prévenir

Merci pour ton invitation, je passerai pour le café avec plaisir !

J'irai me coucher avant minuit, je suis fatigué·e en ce moment

Au fait, nous ne mangeons toujours pas de viande !

Exemples de rappels

Iel nous rejoindra plus tard avec plaisir :)

Pour moi c'est ok, mais iel préfèrera bouquiner au calme.

Iel n'est pas dispo pour les discussions animées, mais iel sera content·e d'être là.

Comme je l'avais dit, ...

Je vous laisse, comme convenu, c'était sympa, merci !

Oui, c'était prévu qu'iel aille se coucher tôt.

Le non préventif n'a bien sûr rien de miraculeux. Il permet juste d'adoucir, pour soi-même comme pour les interlocuteurices, l'impact d'un refus. Dans un environnement où les besoins sont totalement niés, ça ne changera pas le résultat, mais ça peut permettre de renforcer sa capacité à exprimer ses besoins.

Préparer un message clair

Parler d' aménagements ou d' adaptations est possiblement anxiogène pour l'interlocuteurice, qui peut se braquer en pensant être confronté·e à des choses infaisables, trouver ça trop flou pour se projeter, avoir peur de mal faire, etc. La formulation en elle-même peut déclencher plus de panique que de compréhension.

Donner au contraire une liste simple, synthétique et factuelle, va rassurer. C'est concret et opérationnel, et ça évite que la personne ne remplisse les blancs avec ses propres peurs. On peux par exemple dire :

" Dans l'idéal, j'ai besoin de : [liste de mes besoins].
Comment peut-on s'organiser ? "

L'ouverture se fait sur l' organisation pratique, la logistique. Le " peut-on " montre que l'interlocuteurice n'est pas seul·e à devoir gérer et qu'il s'agit bien d'une organisation commune dans laquelle la personne concernée s'implique.

Inutile d'ajouter " sinon c'est pas grave ", " si c'est trop compliqué tant pis " : en général, les gens sont assez autonomes pour refuser : pas besoin de tendre la perche. C'est à l'interlocuteurice de gérer sa capacité d'adaptation.

Pour amener un peu de réciprocité, on peux renvoyer une question du type : " Et toi, tu as besoin de quelque chose en particulier ? " qui va dédramatiser la demande et casser l'asymétrie. On sort ainsi du rôle de la personne autiste qui complique tout, pour amener l'idée qu'être à l'écoute des besoins des un·es et des autres, c'est finalement normal.

Des supports de communication

Ces supports peuvent être utilisés tel quels, ou servir de source d'inspiration : ce sont des exemples à adapter à la fois à la situation sociale et aux besoins de la personnes concernée.

Une fiche personnalisable à imprimer

Voici une fiche pour aider à l'expression des besoins. Le modèle ci dessous a été rempli avec des exemples. La version téléchargeable est vierge et peut être complétée avec les besoins qui te correspondent, ceux de ton enfant ou de ta ou ton proche.

Attention : les créations présentes sur ce site sont soumises au droit d'auteur. L'utilisation pour votre usage personnel est autorisé, mais aucune modification sans autorisation préalable de l'auteure n'est permise. Pour toute autre utilisation que personnelle, me contacter. Merci, en règle générale, de respecter le travail d'autrui.

Pour télécharger la fiche à compléter soi-même, cliquer sur le bouton ci-dessous.

Des messages à copier coller

Sur le même modèle, voici des messages à copier, coller, et modifier selon ses besoins, pour envoyer dans les messageries texte.

Préparer une porte de sortie
Préparer une phrase prête à l'emploi
Même quand les convives sont de bonne volonté, il arrive que les limites soient atteintes. Dans ce cas, une pause est incontournable...et plus simple à vivre si elle ne se fait pas dans la panique. Qu'elle soit définitive ou ponctuelle, mieux elle est préparée, moins elle est anxiogène.

Même si on préfère ne pas en arriver là, toute sortie est légitime. Pas besoin d'attendre d'être au bord du meltdown. Le but est de prévenir, autant que possible. Quelques idées à mettre en place :

Je prends un temps pour moi, je reviens

J'ai un coup de fatigue, à tout à l'heure

Il est temps que je rentre

....

Repérer un point de chute
L'essentiel c'est surtout de ne pas avoir à chercher quoi dire quand on sent que ça devient compliqué.
Préparer un kit de survie

Une pièce calme, possiblement préparée à l'avance

La voiture

Les toilettes

Chez soi ou dans un hôtel à proximité...

Avec tous les objets utiles, comme
Trouver un·e allié·es

Casque à réduction de bruit/écouteurs

Stimtoys

Boisson

chargeur de téléphone...

Quand c'est possible, avoir quelqu'un·e parmi les convives qui connait tes besoins, pourra expliciter ta sortie sans qu'on vienne te demander des comptes, te ramener les choses dont tu as besoin sans t'envahir, t'accompagner si nécessaire. Et pourquoi pas, prévoir à l'avance un code qui te permette de ne pas avoir à expliquer que tu es en détresse.

Si tu as besoins d' arguments pour te sentir plus légitime ou expliquer tes demandes, tu peux lire cet article.

L'essentiel c'est d'être conscient·e qu'un environnement qui refuse de s'adapter, ne le fera pas plus si les demandes changent de forme.
Bonne fin d'année à toustes !
Le but n'est pas de s'épuiser, mais de se préserver. Si ces outils peuvent simplifier le passage difficile des fêtes, tant mieux ! Il reste des situations où ils sont complètement inutiles, et c'est à toi de peser la balance des bénéfices possibles.

Soutenir mon travail
L'argent récolté sert à payer les frais engendrés par la tenue de ce blog, merci ! <3

# data[].attributes.attachment_link.title
Autisme et fêtes : Des outils pour expliquer aux proches comment s’adapter

# data[].attributes.attachment_link.description
Quand on est autiste, la fin d'année peut vite tourner au survival game. On vend les fêtes comme un moment de joie, de partage et de lumière. Pour nous, c'est surtout un marathon sensoriel sous stroboscope. Pièces bondées, discussions croisées, nourriture imposée, câlins obligatoires...Entre obligations familiales et amitiés à préserver, le parcours est souvent rude....

# data[].attributes.attachment_link.authors[].name
Autisme et fêtes : Des outils pour expliquer aux proches comment s’adapter – Le blog de Petite Loutre

# data[].attributes.attachment_link.title
L’autisme, les fêtes, la famille et les ami·es : fais un effort !

# data[].attributes.attachment_link.description
L’autisme et les évènements sociaux, c’est pas toujours le match idéal. Qui ne rêve pas de passer une super soirée faite de discussions animées, de bonne bouffe et d’embrassades ?…

# data[].attributes.attachment_link.title
Autisme et droit à la santé : Comment demander une prise en charge en ALD

# data[].attributes.attachment_link.description
Le droit à la santé est un droit fondamental en France. Cependant, quand on est autiste, de multiples raisons peuvent compliquer l’accès aux soins. Lorsqu’il existe des contraintes fina…

# data[].attributes.attachment_link.title
La psychanalyse est désormais classée comme “non recommandée” face à l’autisme, selon la Haute Autorité de santé

# data[].attributes.attachment_link.description
L’instance de santé publique a jugé que la pratique, source de controverse, n’était pas adaptée dans de nouvelles recommandations sur la prise en charge du trouble autistique, lui préférant des approches dites comportementales et développementales.

# data[].attributes.attachment_link.title
Jeunes autistes trans : une autre étude valide la légitimité de leur identité - Trajectoires Jeunes Trans

# data[].attributes.attachment_link.description
Nouvelle publication de l’équipe britannique

# data[].attributes.headline
Vivre avec un trouble anxieux généralisé

# data[].attributes.subject
Vivre avec un trouble anxieux généralisé

# data[].attributes.headline
Understanding your AuDHD brain (ang stfr)

# data[].attributes.subject
Understanding your AuDHD brain (ang stfr)

# data[].attributes.attachment_link.title
Understanding Your AuDHD Brain (ADHD vs Autism When You're Both)

# data[].attributes.headline
Why So Many AuDHD Adults Feel Broken (ang stfr)

# data[].attributes.subject
Why So Many AuDHD Adults Feel Broken (ang stfr)

# data[].attributes.attachment_link.title
Why So Many AuDHD Adults Feel Broken (What Shame Does to Autistic + ADHD Adults)

# data[].attributes.headline
Douleur : carte d'identité de la personne autiste

# data[].attributes.subject
Douleur : carte d'identité de la personne autiste

# data[].attributes.headline
Echelles évaluation impact immédiat trauma

# data[].attributes.subject
Echelles évaluation impact immédiat trauma

# data[].attributes.attachment_link.provider_name
Institut national de santé publique du Québec

# data[].attributes.attachment_link.description
Veuillez compléter les énoncés qui suivent, en cochant la case qui correspond le mieux à ce que vous avez ressenti pendant et immédiatement après l’événement qui est à l’origine de votre stress post-traumatique.

# data[].attributes.headline
PCLS : échelle de l'état de stress post traumatique

# data[].attributes.subject
PCLS : échelle de l'état de stress post traumatique

# data[].attributes.attachment_link.title
Emission #13 Les Femmes Autistes Racontent... Le Syndrome de Stress Post-Traumatique ou SSPT

# data[].attributes.attachment_link.title
Emission # 14 Les Femmes Autistes Racontent... Le TCA

# data[].attributes.headline
Kit pédagogique accompagnement des personnes autistes

# data[].attributes.subject
Kit pédagogique accompagnement des personnes autistes

# data[].attributes.headline
Grounia Efimovna Soukhareva : la première description du syndrome dit d'Asperger

# data[].attributes.subject
Grounia Efimovna Soukhareva : la première description du syndrome dit d'Asperger

# data[].attributes.body
d’Asperger

# data[].attributes.headline
Burn out autistique - Comprendre l'autisme

# data[].attributes.subject
Burn out autistique - Comprendre l'autisme

# data[].attributes.headline
Brochure autisme au féminin pour les pros de santé

# data[].attributes.subject
Brochure autisme au féminin pour les pros de santé

# data[].attributes.headline
Scolarisation et handicap, se repérer dans les parcours

# data[].attributes.subject
Scolarisation et handicap, se repérer dans les parcours

# data[].attributes.headline
L’autisme au féminin, un diagnostic difficile : à propos de la construction d’une échelle diagnostique

# data[].attributes.subject
L’autisme au féminin, un diagnostic difficile : à propos de la construction d’une échelle diagnostique

# data[].attributes.headline
Le trouble du stress post-traumatique complexe : caractéristiques et prise en charge

# data[].attributes.subject
Le trouble du stress post-traumatique complexe : caractéristiques et prise en charge

# data[].attributes.body
quelles caractéristiques et quelle prise en charge ?

# data[].attributes.headline
Le TDAH chez l’adulte et ses comorbidités Discussion à partir d’un cas clinique d’addiction au Tramadol

# data[].attributes.subject
Le TDAH chez l’adulte et ses comorbidités Discussion à partir d’un cas clinique d’addiction au Tramadol

# data[].attributes.body
et ses comorbidités

Discussion à partir d’un cas clinique

d’addiction au Tramadol

# data[].attributes.headline
International Trauma Questionnaire version fr

# data[].attributes.subject
International Trauma Questionnaire version fr

# data[].attributes.headline
Guide d’entretien entre l'enseignant, l'AESH et la famille

# data[].attributes.subject
Guide d’entretien entre l'enseignant, l'AESH et la famille

# data[].attributes.body
entre l’enseignant,

l’AESH et la famille

# data[].attributes.headline
Tdah âge adulte : concepts, aspects clinique, diagnostic

# data[].attributes.subject
Tdah âge adulte : concepts, aspects clinique, diagnostic

# data[].attributes.body
CLINIQUES, DIAGNOSTIC

# data[].attributes.attachment_link.title
Autisme et dépendances - un regard en trois volets - dépendances avec substances - mai 2016.pdf

# data[].attributes.headline
Risques disproportionnés santé mentale/ femmes autistes : revue synthèse

# data[].attributes.subject
Risques disproportionnés santé mentale/ femmes autistes : revue synthèse

# data[].attributes.attachment_link.readable_text
Highlights

*
Autistic females are at greater risks for mental health challenges than autistic males and non-autistic individuals.

*
Mental health risks in autistic females are modulated by sex-related physiology and gendered experiences.

*
Age, age at autism diagnosis, autistic traits, and co-occurring conditions further modulate mental health risks.

*
Sex differences in mental health outcomes could reflect distinct underlying biological and social mechanisms.

*
Mental health difficulties can have serious consequences, highlighting the need to develop tailored support for autistic females.

Abstract

Mental health conditions are highly prevalent among autistic people, but an updated synthesis of sex-stratified prevalence data, contributing factors, and support strategies is lacking. To address this knowledge gap, we conducted a rapid review utilizing PRISMA-ScR guidelines. MEDLINE, CINAHL, and PsycINFO databases were searched for studies (2004-2024) including female participants with a clinical autism diagnosis, and with a focus on mental health. Of 8,420 records screened, 218 met inclusion criteria. An exploratory quantitative synthesis of population-based and registry-based studies revealed higher rates of mental health conditions in autistic females than males for anxiety, mood, eating, obsessive-compulsive, psychotic, and personality disorders. Narrative synthesis identified moderating factors, including sex-related physiology, gendered experiences, age, age at autism diagnosis, autism characteristics, and co-occurring conditions. Biological and social mechanisms likely interact as contributing factors. Severe consequences of poor mental health underscore the need for tailored approaches accounting for the specific profiles of autistic females.

# data[].attributes.attachment_link.title
Disproportionate mental health risks in autistic females: A rapid review with quantitative and narrative syntheses

# data[].attributes.attachment_link.description
Mental health conditions are highly prevalent among autistic people, but an updated synthesis of sex-stratified prevalence data, contributing factors,...

# data[].attributes.attachment_link.description
Tout le monde a des moments de dissociation et, dans une certaine mesure, ce n’est pas bien méchant. Les personnes autistes sont toutefois plus susceptibles de se retrouver dans cet état un peu « second » à cause entre autres de leurs spécificités sensorielles. De quoi s’agit-il ? Est-ce dangereux ? Peut-on y faire quelque chose ? Abordons tout cela ensemble.

# data[].attributes.attachment_link.description
Many Gen X women are navigating the “chicken or egg” of ADHD symptoms and perimenopause, without adequate guidance.

# data[].attributes.attachment_link.title
Trouble Dysphorique Prémenstruel | Association Tdpm France

# data[].attributes.attachment_link.description
L’association TDPM France oeuvre à la visibilité du Trouble Dysphorique Prémenstruel : annuaire de praticiens, symptômes, ressources à disposition, communauté solidaire
Le trouble dysphorique prémenstruel (TDPM) correspond à une forme sévère du syndrome prémenstruel (SPM).

# data[].attributes.headline
Eugénisme et mensonges sur l'autisme de haut niveau

# data[].attributes.subject
Eugénisme et mensonges sur l'autisme de haut niveau

# data[].attributes.attachment_link.readable_text
Neurodiversity is not a Western concept. It is a natural, global reality - the inherent diversity of human brains, ways of thinking, learning, and being. Yet for centuries, white supremacy has resisted this truth, pathologizing difference as defect and enforcing rigid norms of intelligence, behavior, and communication.

This essay traces how eugenics shaped our diagnoses, how whiteness and capitalism distorted our definitions of intelligence, and why real inclusion demands rejecting Aspie Supremacy-not quietly accommodating it.

(As a published author, my writings are copyrighted and tracked. You may cite me, Lovette Jallow©, but any use of my words without explicit permission is strictly prohibited.)
First let's clarify key terms often confused:

Neurodiversity refers to the fact that variation in brain function and behavior is a normal and valuable part of human diversity - like biodiversity values variation across species.

Neurodivergent describes individuals whose cognitive styles fall outside of dominant norms - including autistic, ADHD, dyslexic, dyspraxic, ASPD, NPD, Epilepsy, Downs Syndrome and other neurotypes.

Today, neurodiversity is often celebrated as a recognition of cognitive difference. But if we stop at celebration without confronting the systems that distorted how difference is treated, we risk mistaking survival under oppression for true inclusion.

Understanding this history is essential. Because without it, the hierarchies we internalize today-including Aspie Supremacy-cannot be fully dismantled.

At the roots of Western autism discourse lies Hans Asperger, a man deeply complicit in Nazi eugenics programs. He selected which autistic children were deemed "valuable" based on proximity to productivity, verbal ability, and usefulness to the state-while condemning others to death.

His so-called "discoveries" were never acts of liberation. They were acts of sorting: preservation for some, erasure for the rest.

Aspie Supremacy is not pride in survival. It is a survival strategy shaped by proximity to whiteness, neurotypicality, and capitalist norms of acceptability-at the cost of those who cannot, or will not, mask their difference.

If we are serious about reclaiming autism-and neurodivergence more broadly-as full expressions of human diversity, not colonial pathology, we must dismantle both external ableism and the internalized hierarchies it left behind.

To understand how white supremacy shaped the narrative around autism-and how Aspie supremacy emerged from it-we have to confront an uncomfortable truth:

Hans Asperger, the man whose name once defined a "high-functioning" autism diagnosis, was deeply complicit in the Nazi regime's eugenics programs.

In today's clinical language, what Sweden calls "Level One Autism" describes individuals seen as able to "perform" close enough to neurotypical standards to need less-or appear to need less-support.

But the roots of that framework are poisoned.

Asperger personally selected which autistic children were deemed "valuable" to the state-and sent those who weren't to their deaths. His so-called "discoveries" were never neutral. They were intertwined with a brutal sorting system built to eliminate those deemed unworthy of life.

This history isn't a footnote. It's the foundation.

It explains why:

Autistic individuals who can perform according to dominant systems are tolerated-but only conditionally.

Those who process, communicate, or move differently are pathologized, sidelined, or harmed.

Society still rewards masking, punishes authenticity, and labels human diversity as "disorder."

My own western diagnosis sits inside this history.

"Level One," they said - but what does it mean when "support needs" are assessed based on how much harm you're willing to endure quietly?

The very concept of "special interests," so often linked with autistic excellence, also emerged from Asperger's framing of usefulness and productivity. Yet even that framing-of worthiness tied to output-remains entangled with dangerous ideas about who deserves survival and dignity.
This sorting logic lives on today inside what we now call Aspie Supremacy:
the belief that verbal, academically successful, or white-passing autistics are "better representatives" of autism.
It is not liberation. It is proximity to power-at the cost of those who cannot, or will not, mask their difference.

When workplaces today talk about "accommodating" autistic talent without interrogating these histories, they unknowingly replicate the same hierarchies:

We cannot separate today's "high-functioning" narratives-or the erasure of nonspeaking, Black, multiply disabled autistics-from the historical violence that first sorted who could be preserved and who could be discarded.
Aspie Supremacy is supremacy thinking in autistic clothing-
and if we are serious about building real neurodivergent liberation, we must dismantle it, too.
We were never meant to thrive under systems built to erase us.

Yet here we are because we have always existed Autism is genetic coded in our DNA.

After World War II, Western psychiatry raced to sanitize its associations with eugenics. In doing so, it did not dismantle the hierarchies-it simply rebranded them.

Those who could perform close to neurotypical expectations were seen as "aspirational" examples.

Those who could not mask, speak fluently, or conform were marginalized-even inside the neurodivergent community itself.

Aspie supremacy emerged inside this divide.
Aspie supremacy is the belief-often unspoken but deeply ingrained-that certain autistics (usually verbal, academically gifted, white, and/or socially passing) are "better," "more evolved," or "more legitimate" than others.

It rewards proximity to whiteness, to verbal fluency, to capitalist productivity.

It punishes nonspeaking autistics, autistic people of color, multiply disabled autistics, and anyone whose difference cannot be hidden or softened for the comfort of dominant systems.

It internalizes eugenic hierarchies rather than dismantling them.

It is important to name that many autistic people clinging to this hierarchy are not acting from malice. They are acting from survival strategies conditioned by decades of societal violence.

When you are told your worth is conditional-that you must prove yourself constantly to survive-grasping at proximity to privilege can feel like protection. But survival is not the same as liberation.

True liberation for autistic people and for all neurodivergent individuals-requires that we reject these internalized hierarchies, even when they once made us feel safe.

Because if our survival depends on distancing ourselves from those deemed "less worthy," then we have not dismantled the system

Aspie supremacy is not a relic of the past. It operates quietly but powerfully, shaping who is seen as "representative," who is platformed, and who remains invisible.

It appears in autistic advocacy spaces that prioritize verbal, white, cisgender faces-while sidelining nonspeaking autistics, autistic people of color, queer autistics, and those with higher support needs whose existence challenges simplified narratives.

It appears in workplace diversity initiatives that celebrate autistic "innovation" and "focus"-yet quietly penalize those who struggle with executive dysfunction, sensory regulation, or the demand to socialize on neurotypical terms.

It appears in media portrayals that reward "quirky genius" stereotypes, while erasing the daily realities of masking, burnout, and the need for systemic support.

It replicates eugenic sorting mechanisms by deciding which autistic lives are seen as valuable-and which are quietly erased.

This dynamic leaves the most marginalized without advocacy, without access, and without institutional support.

It is no coincidence that:

Black autistics are underdiagnosed, misdiagnosed, and systemically underserved.

Nonspeaking autistics face discrimination across education, healthcare, and employment.

Autistics with co-occurring intellectual disabilities are erased from mainstream narratives about success and inclusion.

When survival is tethered to proximity to whiteness, verbal ability, or capitalist productivity, those furthest from these standards are abandoned first.

Until this dynamic is fully named and dismantled, efforts at "inclusion" will continue to replicate the same hierarchies they claim to resist.

Real inclusion demands more than aesthetic diversity.
It requires confronting which autistic lives are being centered-and which are still missing from our institutions, our workplaces, and our policies.

The idea that autistic people can be neatly divided into "high-functioning" and "low-functioning" categories is a lie - a lie built for the comfort of systems, not for the dignity of autistic lives.

This binary was never designed to support us. It was designed to sort, rank, and justify who is deemed worthy of investment:

"High-functioning" means you are useful enough to tolerate, so we invest the bare minimum - until you burn out.

"Low-functioning" means you are written off as incapable, burdensome, or disposable before your strengths are even understood.

Neither label tells the truth about what we need - or who we are.

Both are rooted in the same legacy: eugenics, white supremacy, and capitalist logics of productivity. They sort human beings based on how well we conform, produce, and mask discomfort for others.

This binary is dangerous because it:

Prioritizes neurotypical, whitenormative comfort over actual support.

Forces neurodivergent people to minimize or hide their needs to be seen as "competent."

Pathologizes natural variations in communication, regulation, and learning.

Punishes those whose disabilities are visible while extracting unpaid labor from those who can mask theirs.

And the consequences are deadly.

Research consistently shows that highly masked autistics - those labeled "high-functioning" - face elevated rates of depression, burnout, and suicide. Survival under masking is not thriving. It is survival extracted at enormous cost.

You are not "low-functioning" because you require help with speech, regulation, or daily living. You are navigating a world that weaponizes competence standards built on exclusion.

This is also why Aspie Supremacy fits so neatly into the binary:

It upholds the lie that some autistic lives are proof of meritocracy, while others are treated as failures - both judged by supremacist standards of speech, productivity, and proximity to whiteness.

If we are serious about dismantling white supremacy, we must be just as serious about dismantling the frameworks that treat some neurodivergent lives as exceptional and others as expendable.

Autism is not the problem. The problem is a society obsessed with sorting human worth.

If white supremacy taught the world that only certain bodies, minds, and ways of being deserved survival, then Aspie supremacy learned to survive by clinging to the edges of that value system - trying to be "just close enough" to be spared. It is a survival response.

But it is also a betrayal - a betrayal of the full, messy, brilliant humanity of all neurodivergent people. A betrayal of every autistic child, adult, and elder whose value cannot - and should not - be measured by proximity to whiteness, speech fluency, academic performance, or capitalist productivity.

True neurodiversity work cannot simply celebrate the "palatable" parts of autism. It must reject the systems that ever made survival conditional in the first place. We cannot build a liberated future by sorting ourselves into hierarchies of "good" autistics and "bad" autistics, "valuable" and "burdensome," "articulate" and "inconvenient." That is eugenic thinking - polished, branded, and sold back to us under the false banner of "representation."

What real reclamation looks like is valuing nonspeaking autistic people equally alongside speaking ones. Recognizing that needing more support does not mean living less fully. Understanding that masking to survive is not "success" - it is unpaid labor extracted at enormous cost. Defending the humanity of every neurodivergent individual, regardless of how comfortable or uncomfortable their difference makes dominant systems feel.

Aspie supremacy must be named and dismantled. Because the real measure of inclusion is not how well the most "marketable" among us survive - it is how fiercely we fight for those whom systems would rather forget.

If we allow ourselves to replicate the same sorting mechanisms that once targeted us - if we mistake proximity to power for true safety - then we have learned nothing from the history that tried to erase us. We were never meant to survive by conformity. We were meant to survive by community - by holding space for every expression of autistic life, every strength, every need, every difference - without shame, without sorting, and without abandoning each other to supremacy's demands.

No more hierarchies.
No more sorting.
No more bargains with supremacy.

We build better futures by standing with each other - every voice, every mind, every body, every time.
And for goodness sake, stop calling autism "Asperger's" ("ass burgers"). You're not more legitimate because of a name tied to a man who decided who deserved life and who didn't. Hans Asperger wouldn't have seen your survival as proof of excellence. He might have applauded you - or exterminated you.
Stop acting like an Aspie pick-me.
If your organization is serious about moving beyond surface-level diversity initiatives, my work offers education, consulting, and training grounded in lived experience, structural analysis, and actionable strategies.

I collaborate with institutions ready to build environments where neurodivergent individuals-especially those historically marginalized-are included not through performance, but through true systemic change.

You can book me for:

You can find more of my essays exploring:

Neurodivergence, autism, and navigating public life as a Black woman

Building true inclusion beyond checkbox diversity

Reclaiming voice and agency across personal, political, and historical landscapes

Racism in Sweden and systemic injustice
Each essay connects real-world experience with structural analysis-equipping individuals and institutions to think deeper, act smarter, and build sustainable change.

Lovette Jallow is one of Scandinavia's most influential voices on systemic racism, intersectional justice, and human rights. She is a nine-time award-winning author, keynote speaker, lecturer, and humanitarian specializing in:

As one of the few Black, queer, autistic, ADHD, and Muslim women working at the intersection of human rights, structural accountability, and corporate transformation, Lovette offers a uniquely authoritative perspective rooted in lived experience and professional expertise.

Her work bridges theory, research, and action-guiding institutions to move beyond performative diversity efforts and toward sustainable structural change.

Lovette has worked across Sweden, The Gambia, Libya, and Lebanon-tackling institutional racism, legal discrimination, and refugee protection. Her expertise has been sought by outlets like The New York Times and by leading humanitarian organizations addressing racial justice, policy reform, and intersectional equity.

➔ Follow Lovette Jallow for expert insights on building equitable, neurodivergent-affirming environments.

# data[].attributes.attachment_link.title
Aspie Supremacy, Eugenics, and the Lies of High-Functioning Autism

# data[].attributes.attachment_link.description
Aspie supremacy is a survival strategy rooted in eugenics, whiteness, and capitalist ideals not true liberation. Award-winning author and neurodivergent strategist Lovette Jallow exposes how eugenics, whiteness, and Aspie supremacy shaped autism advocacy and why true inclusion demands dismantling colonial frameworks, not preserving them.

# data[].attributes.headline
Pourquoi les conversations banales épuisent les personnes autistes et TDAH

# data[].attributes.subject
Pourquoi les conversations banales épuisent les personnes autistes et TDAH

# data[].attributes.attachment_link.title
Why Small Talk Exhausts Autistic and ADHD People

# data[].attributes.attachment_link.description
Vagueness isn’t harmless it’s often a tool for control, extraction, and gaslighting towards neurodivergent persons.

# data[].attributes.attachment_link.description
Les risques psychosociaux sont définis comme un risque pour la santé physique et mentale des professionnels. Leurs causes sont à rechercher à la fois dans les conditions d’activité, les facteurs liés à l’organisation du travail et aux relations de travail.
Depuis les années 2000 de nombreuses étude

# data[].attributes.attachment_link.description
Des décennies de recherches, en épidémiologie comme en sciences humaines, démontrent que l’addiction est un phénomène profondément complexe, qui ne concerne qu’un faible pourcentage d’usager·es. Mais…

# data[].attributes.attachment_link.title
[REPLAY] Webinaire "Jeux vidéo et Santé mentale" (26/01/2026)