“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

Research output: Contribution to journalReview articlepeer-review

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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.
Original languageEnglish
Article number102131
JournalClinical Psychology Review
Volume93
Early online date9 Feb 2022
DOIs
Publication statusPublished - 30 Apr 2022

Bibliographical note

Funding Information:
Funding for this study was provided by Autistica (7252). The study was initiated by an interest group set up by Autistica to bring together autistic people, parents, researchers and professionals to co-develop strategic initiatives to facilitate high-quality research on mental health in autism. Autistica had no role in the study design, collection, analysis or interpretation of the data, writing the manuscript, nor the decision to submit the paper for publication.

Funding Information:
This work was supported by the UCLH NIHR BRC.We would like to thank the members of the Autistica Mental Health Study Group for their contributions to this project. Many thanks to Jennifer Ford from the Royal Free Medical Library for her support in developing the systematic search strategy, and to Kate Cooper, John Fox, Catherine Jones and Charli Babb for their advice on methodological approaches to meta-synthesis. We would like to acknowledge the work of all the authors of primary studies included in the meta-synthesis, and, importantly, the contributions of their participants, including autistic individuals, parents and professionals.

Keywords

  • Adulthood
  • Autism spectrum condition
  • Mental health
  • Service experience

ASJC Scopus subject areas

  • Clinical Psychology
  • Psychiatry and Mental health

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