Autism Diagnosis in the United Kingdom: Perspectives of Autistic Adults, Parents and Professionals.
Laura Crane, Richard Batty, Hanna Adeyinka and 3 others
PMID 29948530WHAT IT FOUND
Autistic adults and parents described the diagnostic process as lacking clear information, emotional support, and accessible assessment environments.
They reported feeling abandoned after diagnosis, with no follow-up plan or signposting to long-term support services.
Key findings
01Participants reported a lack of transparency about the diagnostic process, including who was involved, what tools were used, and what post-diagnostic support would be available.
02Assessment environments and materials were often inappropriate for autistic individuals, causing sensory distress or feeling patronising.
03Families felt abandoned after diagnosis, receiving no follow-up appointments, clear signposting, or practical advice on accessing support.
STILL TO COME
How it was doneWhat they foundWhat it means for SLPs
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What it does not show
The sample was small (30 participants) and self-selected from survey respondents, which may bias results toward those with strong opinions. Telephone interviews may have excluded some autistic adults who find phone communication difficult. The sample lacked ethnic diversity and had more women than men, particularly among adults, which may not reflect the wider autism population. Findings are based on experiences from before recent guideline updates, so current practice may differ.
Declared interests
Funded by the British Academy. No conflicts of interest declared.
The easy way to misread this
Do not interpret these themes as evidence that current clinical guidelines are being ignored or that all services are failing. This study reflects the experiences of a small, specific sample in the UK and may not represent the quality of care provided by all autism diagnostic services.