SLPQualitativeAutism : the international journal of research and practice2019

'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 and 2 others

PMID 30497279

WHAT IT FOUND

Autistic adults said mental health support was often hard to get and rarely adapted to them.

They felt dismissed as coping, faced long waits, and met professionals with little autism knowledge. Tailored, consistent support was described as helpful for well-being and safety.

Key findings

01Participants described being excluded from treatment or support because professionals saw them as coping or because autism plus mental health made them seem too complicated.

02Participants described long waiting lists, lack of funding, and poor professional knowledge of autism as barriers to getting help.

03Participants described positive experiences of treatment and support as helpful, and some said it was the reason they were still alive.

STILL TO COME

How it was doneWhat they foundWhat it means for SLPs

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What it does not show

The study is qualitative and exploratory, so it cannot say how common these experiences are in autism. Participants had to be able to respond independently to an online survey, so it says little about autistic adults with co-occurring intellectual disability. Most participants were women, and many had already received treatment, so they may not represent autistic adults who did not take part. Diagnoses were self-reported. The analysis did not separate treatment from support, because participants used the terms interchangeably, so it cannot guide changes to one of those services alone. The researchers were non-autistic, and they state their own preconceptions may have influenced the themes. Only a snapshot of the large dataset was shown. The study did not consider whether delayed diagnosis affected experiences.

Declared interests

The authors declared no conflict of interest. The work was funded by the Economic and Social Research Council, Autistica, and a research pump prime from Coventry University. S.B.-C. was supported by the Autism Research Trust, the MRC, NIHR, and the Innovative Medicines Initiative Joint Undertaking, with resources from the European Union’s Seventh Framework Programme and EFPIA companies in kind. The funders had no role in data collection, analysis, interpretation, or publication.

The easy way to misread this

Do not read this as proof that a specific treatment prevents suicide. It reports autistic adults’ subjective experiences from an online survey, not a controlled outcome comparison. It also cannot show how common these experiences are, because the sample was self-selected and excluded adults who could not complete the survey independently.

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