'We have to try to find a way, a clinical bridge' – autistic adults’ experience of accessing and receiving support for mental health difficulties: a systematic review and thematic meta-synthesis
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Co-occurring mental health difficulties among autistic adults are common and this association has implications for mental health services. Gaining a comprehensive understanding of autistic adults' experiences of accessing and receiving mental health support is a critical step to fully inform service provision. We conducted a systematic review and meta-synthesis of qualitative studies exploring autistic adults' mental health service experiences, triangulating the perspectives of autistic adults, clinicians and parents. Electronic database searches in MEDLINE, PsycINFO and Embase were conducted up to October 2021. This identified 10,068 studies, of which 38 met study inclusion criteria. Using a thematic synthesis approach, we generated three superordinate analytical themes "Lonely, difficult service experience", "Complexity needs flexibility" and "Collaboration and empowerment", each with several subthemes. Our findings show that currently, mental health services do not adequately support autistic adults, and can even cause additional harm. There is a need for a more flexible, comprehensive and holistic approach, considering how being autistic affects the individual's mental health presentation and tailoring support to their needs. Building trusting relationships, listening to autistic adults, and empowering them to take agency, appear to be fundamental steps towards more successful mental health care provision.
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Dissatisfaction with care, high levels of unmet needs, and harmful effects suggest that mental health services do not currently provide sufficient support for many autistic individuals with co-occurring mental health difficulties.
“Dissatisfaction with care,9 high levels of unmet needs,10 and harmful effects11 suggest that mental health services do not currently provide sufficient support for many autistic individuals with co-occurring mental health difficulties.”
From Approaches to improving mental healthcare for autistic people: Systematic review (2024) · cites this paper as [10]
Brede et al. noted a lack of research focused on autistic adults' experiences with specific mental health interventions and pointed to a need for future research on this topic.
“The authors noted a lack of research focussed on autistic adults' experiences with specific mental health interventions and pointed to a need for future research on this topic (Brede et al., 2022).”
From A mixed methods study of autistic adults' mental health therapy experiences (2023) · cites this paper as Brede et al., 2022
Brede et al.'s review found many barriers to autistic adults accessing mental health care.
“The results revealed many barriers to accessing care.”
From A mixed methods study of autistic adults' mental health therapy experiences (2023) · cites this paper as Brede et al., 2022
The therapist's understanding of autism is essential for therapeutic alliance with autistic clients.
“Our results also revealed that the therapist's understanding of autism is essential for therapeutic alliance with autistic clients, in line with prior research on broader health-care experiences (Brede et al., 2022;Mazurek et al., 2021).”
From A mixed methods study of autistic adults' mental health therapy experiences (2023) · cites this paper as Brede et al., 2022
Most participants had received at least some previous counseling or therapy.
“Despite previously documented barriers to mental health care (Brede et al., 2022), most participants had received at least some previous counseling or therapy.”
From A mixed methods study of autistic adults' mental health therapy experiences (2023) · cites this paper as Brede et al., 2022
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What's it like being you? Growing old(er) with Autism Spectrum Conditions – A Scoping Study
Elichaoff, F. (2015) · The European Journal of Social & Behavioural Sciences · doi:10.15405/ejsbs.166 · Cited by 10 · see citing works
Lake, J. K., Milovanov, A., Sawyer, A., & Lunsky, Y. (2014) · Focus on Autism and Other Developmental Disabilities · doi:10.1177/1088357614559215 · Cited by 8 · see citing works
Mack, J. A. (2019) · Scholarship & Creative Works - Digital UNC a service of University Libraries (University of Northern Colorado) · Cited by 4 · see citing works
Henry, A. R. (2013) · University of Southern California Digital Library · doi:10.25549/usctheses-c3-327493 · Cited by 3 · see citing works
Ee, J. P., Lim, J. M., Kroese, B. S., & Rose, J. (2021) · Journal of Policy and Practice in Intellectual Disabilities · doi:10.1111/jppi.12392 · Cited by 3 · see citing works
Coxon, S. (2016) · Surrey Research Insight Open Access (The University of Surrey) · Cited by 2 · see citing works
AUTISM SPECTRUM DISORDERS AND THE HEALTHCARE EXPERIENCES OF AGING ADULTS
Kent, K. (2017) · Innovation in Aging · doi:10.1093/geroni/igx004.692 · Cited by 2 · see citing works
Flagged first, then by citations
Research works printed but not linked: 4
- Bignall, T., Jeraj, S., Helsby, E., & Butt, J. (2019). Racial disparities in mental health: literature and evidence review. Retrieved from London: https://raceequalityfoundation.org.uk/wp-content/uploads/2020/03/mental-health- report-v5-2.pdf
- Jones, P. B. (2018). Adult mental health disorders and their age at onset. British Journal of Psychiatry, 202(s54), s5-s10. doi:10.1192/bjp.bp.112.119164 · DOI · Paper page
- Milton, D., Martin, N., & Melham, P. (2016). Beyond reasonable adjustment: autistic- friendly spaces and Universal Design. in D. Milton & N. Martin (Eds), Autism and Intellectual Disabilities in Adults (pp.81-81). Hove, UK: Pavilion Publishing and Media
- Simonoff, E., Pickles, A., Charman, T., Chandler, S., Loucas, T., & Baird, G. (2008). Psychiatric disorders in children with autism spectrum disorders: prevalence, comorbidity, and associated factors in a population-derived sample. J Am Acad Child Adolesc Psychiatry, 47(8), 921-929. doi:10.1097/CHI. · DOI
Cited by
Sorted by citations
A comparison of the eating disorder service experiences of autistic and non-autistic women in the UK
Babb, C., Brede, J., Jones, C. R. G., Serpell, L., Mandy, W., & Fox, J. (2022) · European Eating Disorders Review · doi:10.1002/erv.2930 · Cited by 54 · see citing works
El Baou, C., Bell, G., Saunders, R., Buckman, J. E. J., Mandy, W., Dagnan, D., O'Nions, E., Pender, R., Clements, H., Pilling, S., et al. (2023) · The Lancet Psychiatry · doi:10.1016/s2215-0366(23)00291-2 · Cited by 37 · see citing works
Self-citationA mixed methods study of autistic adults' mental health therapy experiences
Mazurek, M. O., Pappagianopoulos, J., Brunt, S., Sadikova, E., Nevill, R., Menezes, M., & Harkins, C. (2023) · Clinical Psychology & Psychotherapy · doi:10.1002/cpp.2835 · Cited by 33 · see citing works
Approaches to improving mental healthcare for autistic people: Systematic review
Loizou, S., Pemovska, T., Stefanidou, T., Foye, U., Cooper, R., Kular, A., Greenburgh, A., Baldwin, H., Griffiths, J., Saunders, K. R. K., et al. (2024) · BJPsych Open · doi:10.1192/bjo.2024.707 · Cited by 22 · see citing works
“Furthermore, no tailored pharmacological interventions or prescription initiatives were found, regardless of the common use of psychotropic medication (60), which is perceived as inappropriate by some autistic people (11), highlighting a potential gap.”
Self-citationMy Autistic Childhood and Adult Life: Four Stories of Abuse and Survival
Morgado Ramirez, D. Z. (2022) · Ought: The Journal of Autistic Culture · doi:10.9707/2833-1508.1102 · Cited by 1 · see citing works
- Authors
- Brede, J., Cage, E., Trott, J., Palmer, L., Smith, A., Serpell, L., Mandy, W., & Russell, A.
- Affiliations
- University College London (GB)
- University of Stirling (GB)
- Goldsmiths University of London (GB)
- North East London NHS Foundation Trust (GB)
- University of Bath (GB)
- Corresponding author
- Brede, Janina
- Venue
- Clinical Psychology Review
- Publisher
- Elsevier BV
- Published
- 2022-04
- Volume
- 93
- Pages
- 102131
- ISSN
- 0272-7358 (ISSN-L)
- OpenAlex
- W4210911395
- Cited by
- 139
- References
- 103
- Citations by year
- 2026: 41 · 2025: 40 · 2024: 35 · 2023: 18 · 2022: 5
- FWCI
- 3.41
- Type
- journal article
- Language
- en
- Open access
- bronze
- doi.org
- Licence
- Locations
- Clinical Psychology Review (publishedVersion)
- PubMed (publishedVersion)
- Pure (University of Bath) (acceptedVersion, cc-by-nc-nd)
- Stirling Online Research Repository (University of Stirling) (submittedVersion, cc-by-nc-nd)
- UCL Discovery (University College London) (submittedVersion)
- Funders
- National Institute for Health and Care Research
- University College London Hospitals NHS Foundation Trust
- Topics
- Life Sciences › Neuroscience › Cognitive Neuroscience › Autism Spectrum Disorder Research
- Social Sciences › Psychology › Clinical Psychology › Family and Disability Support Research
- Social Sciences › Psychology › Clinical Psychology › Psychiatric care and mental health services
- Keywords
- autistic adults, access to mental health care, clinician perspectives, parental attitudes, loneliness, service flexibility, collaboration, empowerment
- MeSH terms
- Adult, Autistic Disorder, Mental Disorders, Holistic Health, Humans, Mental Health, Mental Health Services, Parents, Qualitative Research
About these checks
Registry, retraction, Cites and statistics results are computed, not judged, with one exception: a printed reference that no index lists is read once by a model before it counts as a citation error. Claims are extracted by a model and kept only when their quote appears verbatim in the text; each cited source is then checked, with a model’s help, for whether it says what the claim relies on. Those verdicts can be wrong — read the claim’s quote and the cited source before relying on one.
Statistics and arithmetic are recomputed, not judged.
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