‘Something needs to change’: Mental health experiences of young autistic adults in England
Open accessAbstract
There is a high incidence and prevalence of mental health problems among young people, with several barriers to help-seeking noted in this group. High rates of mental health problems have also been reported in children and adults on the autism spectrum. Taken together, young autistic people may be a particularly vulnerable group when it comes to mental health. Yet, there has been remarkably little work on the mental health needs and experiences of young autistic adults (16–25 years). Adopting a community-based participatory research (CBPR) approach – in which academic researchers and young autistic adults collaborated in an equitable research partnership – we explored young autistic people’s experiences of mental health problems and their perspectives on the support they sought, if any, for these problems. A total of 130 young autistic adults took part in the research: 109 completed an online survey and 21 took part in detailed interviews. The results highlight how young autistic people find it difficult to evaluate their mental health, experience high levels of stigma and often face severe obstacles when trying to access mental health support. The findings also demonstrate how listening to – and learning from – young autistic people is crucial in ensuring that their mental health needs are met.
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Many autistic adults report a need and desire for psychotherapy.
“and many autistic adults also report a need and desire for psychotherapy (Baldwin & Costley, 2016;Crane et al., 2019).”
From A mixed methods study of autistic adults' mental health therapy experiences (2023) · cites this paper as Crane et al., 2019
The Online survey reports that 73 respondents (90.1%) had sought help for mental health problems, and Theme 4: Relationships describes young autistic adults wanting professional support. A participant in Barriers to support specifically wished for therapy tailored to their needs, but the paper does not establish that many participants wanted psychotherapy specifically. Page numbers were not available in our copy. (LLM, conf=0.83)
Experimental — accuracy not yet measuredAutistic youth transitioning to adulthood are often reluctant to seek support for their mental health due to social stigma and uncertainty around where to go for care, often leading to the worsening of symptoms.
“However, autistic youth transitioning to adulthood are often reluctant to seek support for their mental health due to social stigma and uncertainty around where to go for care, often leading to the worsening of symptoms.”
From Tackling healthcare access barriers for individuals with autism from diagnosis to adulthood (2022) · cites this paper as [72]
The Discussion (page unavailable) says stigma made young autistic participants less likely to seek help, and Theme 3: Barriers to support describes difficulty accessing services during the transition to adult care. The paper does not establish that uncertainty about where to go caused reluctance to seek help, or that such reluctance often led to worsening symptoms; it instead describes disjointed services and concern that support might arrive only at crisis point. (LLM, conf=0.84)
Experimental — accuracy not yet measuredAdult services struggle with providing adequate care for autistic adults.
“Adult services struggle with providing adequate care for autistic adults (Anderson et al., 2022; Camm-Crosbie et al., 2019; Crane et al., 2019; Nicolaidis et al., 2015)”
From Mindfulness-based stress reduction for autistic adults: A feasibility study in an outpatient context. (2024) · cites this paper as Crane et al., 2019
In Theme 3: Barriers to support, young autistic adults report that adult services offered less help than child services and were often not tailored to their needs. This supports the concern about inadequate care, but the paper studies young autistic adults seeking mental-health support, not autistic adults or adult services generally. (LLM, conf=0.82)
Experimental — accuracy not yet measuredAccess to mental healthcare and appropriate supports are lacking for many autistic adults.
“yet access to mental healthcare and appropriate supports are lacking for many autistic adults (e.g. Crane et al., 2019).”
From Listening to the autistic voice: Mental health priorities to guide research and practice in autism from a stakeholder-driven project (2020) · cites this paper as Crane et al., 2019
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- Authors
- Crane, L., Adams, F., Harper, G., Welch, J., & Pellicano, E.
- Affiliations
- University College London (GB)
- Ambitious about Autism, UK
- Corresponding author
- Crane, Laura
- Venue
- Autism
- Publisher
- SAGE Publications
- Published
- 2018-02-07
- Volume
- 23
- Issue
- 2
- Pages
- 477-493
- ISSN
- 1362-3613 (ISSN-L)
- 1461-7005
- OpenAlex
- W2787370458
- Cited by
- 397
- References
- 62
- Citations by year
- 2026: 119 · 2025: 49 · 2024: 58 · 2023: 38 · 2022: 50 · 2021: 40 · 2020: 21 · 2019: 16 · 2018: 6
- FWCI
- 12.25
- Type
- journal article
- Language
- en
- Open access
- green
- discovery.ucl.ac.uk
- Locations
- Autism (publishedVersion)
- PubMed (publishedVersion)
- UCL Discovery (University College London) (submittedVersion)
- University of Birmingham Research Portal (University of Birmingham) (submittedVersion)
- Funders
- National Institute for Health and Care Research
- Mashhad University of Medical Sciences
- Topics
- Life Sciences › Neuroscience › Cognitive Neuroscience › Autism Spectrum Disorder Research
- Social Sciences › Psychology › Social Psychology › Mental Health Treatment and Access
- Social Sciences › Psychology › Clinical Psychology › Family and Disability Support Research
- Keywords
- mental health, autism spectrum disorder, help-seeking, mental health stigma, barriers to mental health support, mental health needs, lived experience, community-based participatory research, research collaboration
- MeSH terms
- Help-Seeking Behavior, Autism Spectrum Disorder, Adolescent, Adult, Anxiety, Attitude to Health, Autistic Disorder, Mental Disorders, Depression, England, Female, Health Services Accessibility, Humans, Male, Mental Health Services, Quality of Life, Community-Based Participatory Research, Young Adult, Social Stigma
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