A critical reflection on definitions of autistic well‐being

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Deakin, M., Stephanie, P., Heasman, B., & Hamilton, L. (2024). A critical reflection on definitions of autistic well‐being. Brain and Behavior, 14(7), Article e3572. https://doi.org/10.1002/brb3.3572

Publication date: 30 Jun 2024 Added to AutiHub: 30 Aug 2026 Type: Article Article language: English
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Authors

Publication authors
4
Publication authors identified as autistic
1 / 4 (25.0%)
  1. Michele Deakin
  2. Petty Stephanie
  3. Brett Heasman *
  4. Lorna Hamilton

Abstract

Our ongoing systematic literature review of psychological well-being interventions for autistic adults highlighted that the concept of well-being has been poorly operationalized for autistic people in clinical literature. Our investigation aims to contribute a novel review of how well psychological well-being interventions are designed for autistic adults. While assumptions around the definition of autism have been critiqued extensively in literature (Heasman & Parfitt, 2023) our review of 69 studies found that the concept of “well-being”, as it applies to autistic people, has received comparatively little attention. We raise three issues with the current oversimplification of well-being when it is understood as a return to “normal” functioning through the remediation of ill-being. We suggest that a way forward is to embrace contemporary theorizing of both being autistic (Chapman, 2021; Kourti, 2021) and of experiencing wellness vulnerabilities (van Os et al., 2019). A review of what is meant by autistic well-being would inform clinical and research practices. In our review we have found that representations of well-being of autistic people were diverse; however, they lacked critical evaluation. Well-being was operationalized as a wide range of outcomes, such as a reduction in anxious thoughts (Langdon et al., 2016), or an increase in social relating (Oswald et al., 2018). Some studies measured changes in multiple domains, such as stress, anxiety, depression and quality of life (Pahnke et al., 2019). Importantly, many authors either (a) commented that the outcome measures used to demonstrate the effectiveness of a therapeutic intervention were not designed for autistic people or (b) did not specify how the measures would be appropriate for use with autistic people. This lack of criticality can lead to misinterpretations (Stewart et al., 2006). For example, an autistic person might reduce social demands temporarily as a way to improve their well-being, rather than this being a reflection of ill-being (Pearson & Rose, 2021). This highlights how autistic people have described their distress being misunderstood in clinical practice (Au-Yeung et al., 2019; Babb et al., 2021), emphasizing the need to hear lived experiences over default definitions. Systematic reviews have identified wide variability in the reported rates of anxiety, depression and suicide ideation for autistic people (Cassidy et al., 2018; Hollocks et al., 2019; Wigham et al., 2017). For example, one review identified that rates of depression reported for autistic people without cognitive impairment varied from 1% to 47% (Wigham et al., 2017). Potential reasons for this variation include the lack of definitive conceptualizations of depression for autistic people, as well as uncertain validity of the outcome measures used. One response to these concerns has been to develop measures designed with and for autistic adults, for example the Anxiety Scale for Autism—Adults (Rodgers et al., 2020). Together, these findings show the need for a stable definition of “autistic well-being” to aid further development of appropriate tools for research and clinical practice. The experience of well-being may be different for autistic people compared with their non-autistic peers, but measures of autistic well-being are often based on normative models (Ayres et al., 2018; Lam et al., 2021). Assuming that being well means being “typical” is counterproductive (Milton & Sims, 2016). Current guidance tells practitioners to follow established therapeutic intervention protocols for the general population, and to tailor these for autistic people (NICE, 2021; Scottish Intercollegiate Guidelines Network, 2016). A critical review of the conceptualization of autistic well-being will open up research possibilities. Many studies featured in our ongoing review were exploratory pilot or feasibility studies, reflecting the early development of research in this area. Developing work is considering concepts of marginalization and societal justice more broadly (Petty, Hamilton et al., 2023). There are associated implications for individual well-being, including an autistic person's sense of belonging (Milton & Sims, 2016; Sonuga-Barke, 2023). To direct future research, it is helpful to note that the challenge of identifying a stable definition of well-being is not limited to autistic people. Dodge et al. (2012) defined well-being as “the balance point between an individual's resource pool and the challenges faced, where resources and challenges can be psychological, social and physical,” (p. 230). However, well-being is more than an absence of illness or negative stressors (Dodge et al., 2012; Waters et al., 2009). The idea that ill-being inevitably stems from being autistic needs to be challenged; instead ill-being stems from a combination of external and internal factors (Chapman, 2020). A revised understanding of autistic well-being will need to consider elements often missed from definitions created for a neurotypical majority, including sensory processing differences (Milton & Sims, 2016; Petty, Lambarth et al., 2023; Robeyns, 2016). Sensory processing is a dimension of well-being that can help understand pain and fatigue for autistic people (Robeyns, 2016). A scale of overwhelm or fatigue may offer a better metric of emotional distress than standardized tools assessing anxiety or depression (Petty, Lambarth et al., 2023). A stronger conceptualization of autistic well-being requires a theoretical rationale about what well-being is, and a nuanced approach to how this interacts with characteristics of being autistic, intersectional complexities, and support needs. This conceptualization would appreciate how well-being is situated within societal and structural environments that may support or limit well-being capabilities (Lam et al., 2021; Robeyns, 2016). Importantly, the potential to flourish also needs to be recognized.

Bibliography cited by this reference

Cited references are imported from external metadata sources when they are available. The list may be partial.

Cited bibliography overview

These indicators describe the bibliography cited by this publication. An author name is counted each time it appears in one cited reference, so the same person can be counted more than once. Names not yet linked to an author already present in AutiHub are treated as unknown, not as non-autistic. Last computed: 28 Oct 2026 21:31.

Cited references
31
With a DOI
28
Without a DOI, from raw bibliography text
3
12 / 31 (38.7%) cited references include at least one author identified as autistic.
References with data to complete
2 / 31 (6.5%)
References with detected author names
29 / 31 (93.5%)
Without detected author names
2
Without a structured title
2
Without a stable identifier
3
References with raw author names still to review
2
References with external metadata lookup issues
0
These indicators apply to cited references displayed on this page, after technical duplicates have been merged. A reference without a DOI can still support author statistics when a title and author names are available.
Author names detected in the cited bibliography
115
From DOI or external metadata
115
From validated raw bibliography text
0
Raw names already validated
0
Raw names still to review
2
72 / 115 (62.6%) names are linked to an author already present in AutiHub. 43 / 115 (37.4%) names are not yet linked.
Names linked to a person identified as autistic
13 / 115 (11.3%)
Calculated across all author names detected in the cited bibliography. Among names linked to an author already present in AutiHub: 13 / 72 (18.1%). Distinct people identified as autistic: 9 / 100 (9.0%).
  1. ELIZABETH WATERS , ELISE DAVIS , GABRIEL M RONEN , Peter Rosenbaum , MICHAEL LIVINGSTON , SAROJ SAIGAL (2009). Quality of life instruments for children and adolescents with neurodisabilities: how to choose the appropriate instrument . Developmental Medicine & Child Neurology, 51(8), 660-669. Wiley.
    Type: Article DOI: 10.1111/j.1469-8749.2009.03324.x OpenAlex: https://openalex.org/W1973044606
    Crossref OpenAlex
  2. Sheena K. Au‐Yeung , Louise Bradley , Ashley Robertson , Rebecca Shaw , S. Baron-Cohen , Sarah Cassidy (2019). Experience of mental health diagnosis and perceived misdiagnosis in autistic, possibly autistic and non-autistic adults . Autism, 23(6), 1508. SAGE Publications.
    Type: Article DOI: 10.1177/1362361318818167 OpenAlex: https://openalex.org/W2905534692
    Crossref OpenAlex OpenCitations
  4. Mary Stewart , Louise Barnard , Joanne Pearson , Reem Hasan , Gregory O’Brien (2006). Presentation of depression in autism and Asperger syndrome . Autism, 10(1), 103-116. SAGE Publications.
    Type: Article DOI: 10.1177/1362361306062013 OpenAlex: https://openalex.org/W2096548756
    Crossref OpenAlex OpenCitations
  6. Jim van Os , Sinan Guloksuz , Thomas Willem Vijn , Anton Hafkenscheid , Philippe Delespaul (2019). The evidence‐based group‐level symptom‐reduction model as the organizing principle for mental health care: time for change? World Psychiatry, 18(1), 88-96. Wiley.
    Type: Article DOI: 10.1002/wps.20609 OpenAlex: https://openalex.org/W2908106196
    Crossref OpenAlex OpenCitations
  7. Peter E. Langdon , Glynis Murphy , Lee Shepstone , Edward C.F. Wilson , David Fowler , David Heavens et al. (2016). The People with Asperger syndrome and anxiety disorders (PAsSA) trial: a pilot multicentre, single-blind randomised trial of group cognitive–behavioural therapy . BJPsych Open, 2(2), 179-186. Royal College of Psychiatrists.
    Type: Article DOI: 10.1192/bjpo.bp.115.002527 OpenAlex: https://openalex.org/W2317571004
    Crossref OpenAlex OpenCitations
  10. Ingrid Robeyns (2016). Conceptualising well-being for autistic persons . Journal of Medical Ethics, 42(6), 383-390. BMJ.
    Type: Article DOI: 10.1136/medethics-2016-103508 OpenAlex: https://openalex.org/W2333559982
    Crossref OpenAlex
  11. Sarah Cassidy , Louise Bradley , E. Bowen , Sarah Wigham , Jacqui Rodgers (2018). Measurement properties of tools used to assess depression in adults with and without autism spectrum conditions: A systematic review . Autism Research, 11(5), 738-754. Wiley.
    Type: Article DOI: 10.1002/aur.1922 OpenAlex: https://openalex.org/W2783826777
    Crossref OpenAlex OpenCitations
  12. Robert Chapman * (2021). Neurodiversity and the Social Ecology of Mental Functions . Perspectives on Psychological Science, 16(6), 1360-1372. SAGE Publications.
    Type: Article DOI: 10.1177/1745691620959833 OpenAlex: https://openalex.org/W3126691317
    AutiHub · Autistic Autism Scholarship Project Crossref OpenAlex OpenCitations
  13. Robert Chapman * (2020). Neurodiversity studies . In Neurodiversity studies (pp. 57). Routledge.
    Type: Book chapter DOI: 10.4324/9780429322297-7 OpenAlex: https://openalex.org/W2966072789
    AutiHub · Autistic Autism Scholarship Project Crossref OpenAlex OpenCitations
  14. Matthew Hollocks , Jian Wei Lerh , Iliana Magiati , Richard Meiser-Stedman , Traolach Brugha (2019). Anxiety and depression in adults with autism spectrum disorder: a systematic review and meta-analysis . Psychological Medicine, 49(4), 559-572. Cambridge University Press (CUP).
    Type: Article DOI: 10.1017/s0033291718002283 OpenAlex: https://openalex.org/W2889987209
    Crossref OpenAlex OpenCitations
  15. Kate Cooper , Laura G. E. Smith , Ailsa Russell (2017). Social identity, self‐esteem, and mental health in autism . European Journal of Social Psychology, 47(7), 844-854. Wiley.
    Type: Article DOI: 10.1002/ejsp.2297 OpenAlex: https://openalex.org/W2593228649
    Crossref OpenAlex OpenCitations
  17. Sarah Wigham , Stephen Barton , Jeremy R. Parr , Jacqui Rodgers (2017). A Systematic Review of the Rates of Depression in Children and Adults With High-Functioning Autism Spectrum Disorder . Journal of Mental Health Research in Intellectual Disabilities, 10(4), 267-287. Informa UK Limited.
    Type: Article DOI: 10.1080/19315864.2017.1299267 OpenAlex: https://openalex.org/W2600105590
    Crossref OpenAlex OpenCitations
  18. Tasha M. Oswald , Breanna Winder-Patel , Steven Ruder , Guibo Xing , Aubyn C. Stahmer , Marjorie Solomon (2018). A Pilot Randomized Controlled Trial of the ACCESS Program: A Group Intervention to Improve Social, Adaptive Functioning, Stress Coping, and Self-Determination Outcomes in Young Adults with Autism Spectrum Disorder . Journal of Autism and Developmental Disorders, 48(5), 1742-1760. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s10803-017-3421-9 OpenAlex: https://openalex.org/W2775578392
    Crossref OpenAlex
  19. Rachel Dodge , Annette Daly , Jan Huyton , Lalage Sanders (2012). The challenge of defining wellbeing . International Journal of Wellbeing, 2(3), 222-235. International Journal of Wellbeing.
    Type: Article DOI: 10.5502/ijw.v2i3.4 OpenAlex: https://openalex.org/W4250386232
    Crossref OpenAlex OpenCitations
  20. Edmund J.S. Sonuga-Barke (2023). Paradigm ‘flipping’ to reinvigorate translational science: outlining a neurodevelopmental science framework from a ‘neurodiversity’ perspective. J Child Psychol Psychiatry, 64(10), 1405. Wiley.
    Type: Article DOI: 10.1111/jcpp.13886 OpenAlex: https://openalex.org/W4386725779
    Crossref OpenAlex OpenCitations
  22. Johan Pahnke , Tatja Hirvikoski , Johan Bjureberg , Sven Bölte , Jussi Jokinen , Benjamin Bohman et al. (2019). Acceptance and commitment therapy for autistic adults: An open pilot study in a psychiatric outpatient context . Journal of Contextual Behavioral Science, 13, 34-41. Elsevier BV.
    Type: Article DOI: 10.1016/j.jcbs.2019.04.002 OpenAlex: https://openalex.org/W2942019693
    Crossref OpenAlex OpenCitations
  24. Gary Yu Hin Lam , Sujay V. Sabnis , María Migueliz Valcarlos , Jennifer R. Wolgemuth (2021). A Critical Review of Academic Literature Constructing Well-Being in Autistic Adults . Autism in Adulthood, 3(1), 61-71. SAGE Publications.
    Type: Article DOI: 10.1089/aut.2020.0053 OpenAlex: https://openalex.org/W3129551381
    Crossref OpenAlex OpenCitations
  27. NICE. (2021). Autism. Recognition referral diagnosis and management of adults on the autism spectrum National Clinical Guideline Number 142. https://www.nice.org.uk/guidance/cg142/chapter/Research‐recommendations
    Type: Other
    Crossref
  28. Petty S. (2023). The SAGE handbook of social justice in the psychological therapies . The SAGE handbook of social justice in the psychological therapies.
    Type: Other
    Crossref
  29. Petty Stephanie , Shauna Lambarth , Lorna Hamilton (2025). Rethinking anxiety and depression for autistic adults through personal narratives: A mixed‐method analysis of blog data . Counselling and Psychotherapy Research, 25(1). Wiley.
    Type: Article DOI: 10.1002/capr.12729 OpenAlex: https://openalex.org/W4389200827
    Crossref OpenAlex OpenCitations
  30. Scottish Intercollegiate Guidelines Network. (2016). Assessment diagnosis and interventions for autism spectrum disorders A national clinical guideline. SIGN publication no. 145.
    Type: Other
    Crossref