Cited by 415Autism Spectrum Disorder ResearchSuicide and Self-Harm StudiesFamily and Disability Support Research

The DOI matches its Crossref record; 45 of the 45 references it cites were found in a registry or an index; none of the 59 sources its claims cite is checked for support yet.

‘People like me don’t get support’: Autistic adults’ experiences of support and treatment for mental health difficulties, self-injury and suicidality

Open access
Camm-Crosbie, Louise, Bradley, Louise, Shaw, Rebecca, Baron-Cohen, Simon, Cassidy, Sarah·2019·Autism

Abstract

Autistic people are at high risk of mental health problems, self-injury and suicidality. However, no studies have explored autistic peoples’ experiences of treatment and support for these difficulties. In partnership with a steering group of autistic adults, an online survey was developed to explore these individuals’ experiences of treatment and support for mental health problems, self-injury and suicidality for the first time. A total of 200 autistic adults (122 females, 77 males and 1 unreported) aged 18–67 (mean = 38.9 years, standard deviation = 11.5), without co-occurring intellectual disability, completed the online survey. Thematic analysis of open-ended questions resulted in an overarching theme that individually tailored treatment and support was both beneficial and desirable, which consisted of three underlying themes: (1) difficulties in accessing treatment and support; (2) lack of understanding and knowledge of autistic people with co-occurring mental health difficulties and (3) appropriate treatment and support, or lack of, impacted autistic people’s well-being and likelihood of seeing suicide as their future. Findings demonstrate an urgent need for autism treatment pathways in mental health services.

Overview

AI snapshot

Written from the paper’s full text.

TL;DR

In an online survey of 200 autistic adults without co-occurring intellectual disability, participants described tailored treatment and support as beneficial and desirable but often inaccessible. Thematic analysis identified barriers in access, professionals’ lack of autism knowledge, and impacts on well-being, including whether suicide was seen as a future.

Key findings

  • Of 200 participants, 90.4% had a mental health diagnosis, most commonly depression and anxiety. For treatment (n = 197), 164 (83.2%) had received or were receiving treatment, while 29 (14.7%) needed/currently needed treatment but had not received it; for support (n = 198), 164 (82.8%) wanted or currently received support, and among those who wanted support and answered on support types (n = 159), 76 (47.8%) currently received none.
  • The overarching theme was that individually tailored treatment and support was both beneficial and desirable, with three underlying themes: difficulties accessing treatment and support; lack of understanding and knowledge of autistic people with co-occurring mental health difficulties; and appropriate treatment and support, or lack of, impacting well-being and likelihood of seeing suicide as their future.
  • Reported barriers included being dismissed as “coping” (26 participants), support geared towards autistic children (9), long waiting lists and lack of funding (37), lack of local treatment (12), professionals’ poor autism knowledge (89), obstacles to accessing/receiving treatment and support (34), not being believed or listened to (29), and treatment not suited to needs (38).
  • Positive and enabling experiences were reported by 63 participants, including improved mental health and well-being; 7 participants said suicide was no longer viewed as part of their future, and some described treatment/support as the reason “I am still alive” (1F) or that “I would not be alive without it” (435M).

Methods

  • A participatory online survey was developed with an autistic steering group of eight autistic adults without intellectual disability (six female, two male) across six focus groups; the steering group fed back on three drafts.
  • Participants were 200 autistic adults without co-occurring intellectual disability, aged 18–67 (mean = 38.9 years, SD = 11.5), recruited from the United Kingdom through the Cambridge Autism Research Database, charities and support groups, educational institutions, and social media.
  • Open-ended survey responses were analysed using thematic analysis (Braun and Clarke, 2006), from an essentialist, inductive, data-driven position; L.C.-C. carried out the analysis, with themes discussed and refined with S.C. and L.B.

Limitations

  • The paper states that respondents were autistic adults able to respond independently online, so results are not generalisable to those with co-occurring intellectual disability; the majority of the sample were autistic women, opposite to the gender bias in the wider autistic population; and many participants had experienced mental health treatment and may have responded because they felt the survey was important, so they may not represent non-responders.
  • The paper also states that diagnoses were self-reported, the exploratory qualitative approach cannot draw conclusions on prevalence, only a snapshot of main themes could be displayed, the broad age of autism diagnosis (2–59 years) was not analysed for delayed-diagnosis effects, and treatment and support were not distinguished because participants used the terms interchangeably.
  • Evident from the text: the sample is self-selected and predominantly female, and the findings rely on self-report and qualitative interpretation, so the frequency counts are presented as gauges of shared experience rather than prevalence estimates.

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Integrity signals

Registry

Crossref · 10.1177/1362361318816053

Cites

45 of 45 references verified0 citation errors · 0 not checkable

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61 Own result · 44 Not checked yet · 12 Own method · 9 Own interpretation · 4 No basis given

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  • It may state two separate claims as one. 48
  • The quote only partly states this claim. 1
  • Probably not a substantial claim. 19
59 of 59
  • The paper relies on this without support.

    No studies have explored autistic people's experiences of treatment and support for mental health problems, self-injury and suicidality.

    “However, no studies have explored autistic peoples’ experiences of treatment and support for these difficulties.”
  • The paper relies on this without support.

    Little is known about autistic adults' experiences of receiving treatment and support for mental health problems, self-injury and suicidality, with a majority of studies being quantitative.

    “Little is known about autistic adults’ experiences of receiving treatment and support for mental health problems, self-injury and suicidality, with a majority of studies being quantitative.”
  • The paper relies on this without support.

    When similar experiences are reported, it provides compelling evidence for a shared understanding of the issues being explored.

    “When similar experiences are reported, it provides compelling evidence for a shared understanding of the issues being explored.”
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Citations

Cites

Research works printed but not linked: 3

  1. Hedley D, Uljarević M (2018) Systematic review of suicide in autism spectrum disorder: current trends and implications. Current Developmental Disorders Reports 1: 12.
  2. Milton D, Bracher M (2013) Autistics speak but are they heard? Medical Sociology Online 7: 61–69.
  3. Robson C (1993) Real World Research: A Resource for Social Scientists and Practitioners-researchers. Mallden, MA: Blackwell Publishers.

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Metadata

Authors
Camm-Crosbie, L., Bradley, L., Shaw, R., Baron-Cohen, S., & Cassidy, S.
Affiliations
  • Coventry University (GB)
  • Coventry and Warwickshire Partnership NHS Trust (GB)
  • University of Cambridge, UK
  • University of Nottingham (GB)
Corresponding author
Cassidy, Sarah
Venue
Autism
Published
2018-11-29
Volume
23
Issue
6
Pages
1431-1441
ISSN
  • 1362-3613 (ISSN-L)
  • 1461-7005
OpenAlex
W2902777586
Cited by
415
References
45
Citations by year
2026: 62 · 2025: 79 · 2024: 71 · 2023: 53 · 2022: 69 · 2021: 46 · 2020: 26 · 2019: 8
FWCI
11.89
Type
journal article
Language
en
Open access
Locations
  • Autism (publishedVersion, cc-by)
  • PubMed Central (publishedVersion, cc-by)
  • PubMed (publishedVersion)
  • Repository@Nottingham (University of Nottingham) (publishedVersion, other-oa)
  • Repository@Nottingham (University of Nottingham) (submittedVersion, cc-by)
  • Pure (Coventry University) (submittedVersion, cc-by)
  • University of Bedfordshire Repository (University of Bedfordshire) (submittedVersion, cc-by-nc-nd)
  • Apollo (University of Cambridge) (submittedVersion, cc-by)
  • Apollo (cc-by)
Funders
Economic and Social Research Council (ES/N000501/2)
Topics
  • Life Sciences › Neuroscience › Cognitive Neuroscience › Autism Spectrum Disorder Research
  • Social Sciences › Psychology › Clinical Psychology › Suicide and Self-Harm Studies
  • Social Sciences › Psychology › Clinical Psychology › Family and Disability Support Research
Keywords
autistic adults, mental illness, self-harm, suicidality, treatment access, mental health support, tailored treatment, well-being, suicide risk, lived experience
MeSH terms
Adolescent, Adult, Aged, Autistic Disorder, Mental Disorders, Female, Health Services Accessibility, Humans, Male, Middle Aged, Surveys and Questionnaires, Self-Injurious Behavior, Young Adult, Suicidal Ideation

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