Understanding the post-diagnostic support priorities of autistic adults in the United Kingdom: A co-produced modified Delphi study.
Susanna Crowson, Daniel Poole, Kelly Scargill and 1 others
PMID 37776060WHAT IT FOUND
Autistic adults prioritise support that is accessible regardless of location and delivered by autism-trained professionals.
They want individualised plans that respect their communication preferences, address the impact of late diagnosis and masking, and offer flexible, 'step-on step-off' access to services.
Key findings
01The highest consensus priorities were access to support irrespective of where the person lives and access to professionals with specialist up-to-date training on autism.
02Participants strongly endorsed support plans that take into account communication and contact preferences, and that begin at a time that feels right for the individual post-diagnosis.
03Help with autistic fatigue and support to process the impact of a late diagnosis were identified as key emotional and psychological support priorities.
STILL TO COME
How it was doneWhat they foundWhat it means for OTsWhat it means for SLPs
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What it does not show
The sample was highly educated and predominantly White, which may not represent the wider autistic adult population. Very few participants were over 65 years old (1%), limiting applicability to older adults. The study excluded individuals experiencing digital poverty. This is a consensus study on priorities, not an effectiveness study of interventions.
Declared interests
The authors declared no conflicts of interest. Funding was provided by Higher Education Innovation Funding to The University of Sheffield and an Economic and Social Research Council Award.
The easy way to misread this
Do not interpret these findings as evidence that these support strategies improve health outcomes. This study identifies what autistic adults want from services, not which interventions are clinically effective.