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

Louise Camm-Crosbie, Louise Bradley, Rebecca Shaw, Simon Baron-Cohen, Sarah Cassidy

    Research output: Contribution to journalArticle

    26 Citations (Scopus)
    22 Downloads (Pure)

    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.
    Original languageEnglish
    Pages (from-to)1431-1441
    Number of pages11
    JournalAutism
    Volume23
    Issue number6
    Early online date29 Nov 2018
    DOIs
    Publication statusPublished - Aug 2019

    Bibliographical note

    This article is distributed under the terms of the Creative Commons Attribution 4.0 License (http://www.creativecommons.org/licenses/by/4.0/) which permits any use, reproduction and distribution of the work without further permission provided the original work is attributed as specified on the SAGE and Open Access pages (https://us.sagepub.com/en-us/nam/open-access-at-sage).

    Copyright © and Moral Rights are retained by the author(s) and/ or other copyright owners. A copy can be downloaded for personal non-commercial research or study, without prior permission or charge. This item cannot be reproduced or quoted extensively from without first obtaining permission in writing from the copyright holder(s). The content must not be changed in any way or sold commercially in any format or medium without the formal permission of the copyright holders.

    Funder

    This work was supported by the Economic and Social Research Council (grant number ES/N000501/2), Autistica (grant number 7247) and a research pump prime from Coventry University (received by S.C.). S.B.-C. was supported by the Autism Research Trust, the MRC, the National Institute for Health Research (NIHR) Collaboration for Leadership in Applied Health Research and Care East of England at Cambridgeshire and Peterborough NHS Foundation Trust, and the Innovative Medicines Initiative Joint Undertaking under grant agreement no. 115300, resources of which are composed of financial contribution from the European Union’s Seventh Framework Programme (FP7/2007–2013) and EFPIA companies’ in kind contribution. The views expressed are those of the authors and not necessarily those of the NHS, the NIHR or the Department of Health. The funders had no role in the data collection, analysis or interpretation or any aspect pertinent to the study or publication. The corresponding author has full access to the data in the study and had final responsibility for the decision to submit for publication.

    Keywords

    • Autism spectrum condition
    • mental health
    • self-injury
    • suicide
    • support
    • treatment

    ASJC Scopus subject areas

    • Developmental and Educational Psychology

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