"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

Janina Brede; Eilidh Cage; Joseph Trott; Lisa Palmer; Anika Smith; Lucy Serpell; Will Mandy; Ailsa Russell

doi:10.1016/j.cpr.2022.102131

"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

Clin Psychol Rev. 2022 Apr:93:102131. doi: 10.1016/j.cpr.2022.102131. Epub 2022 Feb 9.

Authors

Janina Brede¹, Eilidh Cage², Joseph Trott³, Lisa Palmer⁴, Anika Smith⁴, Lucy Serpell⁵, Will Mandy⁶, Ailsa Russell⁷

Affiliations

¹ Research Department of Clinical, Educational and Health Psychology, University College London, 1-19 Torrington Place, London WC1E 6BT, UK. Electronic address: Janina.brede@ucl.ac.uk.
² Department of Psychology, Faculty of Natural Sciences, University of Stirling, Stirling, FK9 4LA, Scotland, UK.
³ Department of Psychology, Goldsmiths, University of London, Whitehead Building, New Cross, London SE14 6NW, UK.
⁴ No affiliation, London, UK.
⁵ Research Department of Clinical, Educational and Health Psychology, University College London, 1-19 Torrington Place, London WC1E 6BT, UK; Eating Disorder Service, North East London Foundation NHS Trust, Essex, UK.
⁶ Research Department of Clinical, Educational and Health Psychology, University College London, 1-19 Torrington Place, London WC1E 6BT, UK.
⁷ Department of Psychology, University of Bath, Claverton Down, Bath BA2 7AY, UK.

PMID: 35180632
DOI: 10.1016/j.cpr.2022.102131

Abstract

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.

Keywords: Adulthood; Autism spectrum condition; Mental health; Service experience.

Publication types

Research Support, Non-U.S. Gov't
Systematic Review

MeSH terms

Adult
Autistic Disorder* / complications
Autistic Disorder* / psychology
Autistic Disorder* / therapy
Holistic Health
Humans
Mental Disorders / etiology*
Mental Disorders / psychology
Mental Disorders / therapy*
Mental Health / standards
Mental Health Services* / standards
Parents
Qualitative Research