'I'm not just being difficult . . . I'm finding it difficult': A qualitative approach to understanding experiences of autistic parents when interacting with statutory services regarding their autistic child.
Sarah Radev, Megan Freeth, Andrew R Thompson
PMID 37997851WHAT IT FOUND
Autistic parents described statutory services as an unjust system that forced them to fight for support, damaging their mental health.
They felt dismissed by professionals who used stigmatising language or lacked autism training, making disclosure of their own diagnosis risky.
Key findings
01Participants felt the wider system was the problem, experiencing it as unjust and requiring them to fight for support, which led to exhaustion and reduced mental wellbeing.
02Parents felt judged and stigmatised by professionals using outdated terms like 'high functioning' or 'disorder', and by inadequate autism training that failed to recognise their needs.
03Disclosing their own autism diagnosis had mixed outcomes; some felt empowered and more credible, while others feared being judged as less capable parents.
STILL TO COME
How it was doneWhat they foundWhat it means for SLPs
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What it does not show
The sample consisted only of women, excluding the experiences of autistic fathers. Participants were largely White British and well-educated, so findings may not apply to other backgrounds or socioeconomic groups. All participants had received an autism diagnosis in adulthood, excluding those diagnosed in childhood or those still seeking a diagnosis. The study focused on parents of children in mainstream schools, so experiences regarding special education settings are not represented.
The easy way to misread this
Do not read the mixed results on disclosure as evidence that hiding a diagnosis is safer. Some parents found disclosing their autism made them feel more credible and empowered when advocating for their children.