Real-World Experiences in Autistic Adult Diagnostic Services and Post-diagnostic Support and Alignment with Services Guidelines: Results from the ASDEU Study.
Maria Luisa Scattoni, Martina Micai, Antonio Ciaramella and 36 others
PMID 33502713WHAT IT FOUND
Most autistic adults experienced recommended diagnostic assessments, but very few received post-diagnostic support.
Information on how to get a diagnosis was hard to find or understand for many. A large gap exists between what professionals believe they provide and what patients actually receive.
Key findings
0167% of autistic adults and 70% of carers reported receiving none or only one recommended post-diagnostic support feature.
02Less than half of all respondents found information on how to get a diagnosis easy to find or understand.
03While most recommended features for the diagnostic evaluation were experienced by users, professionals reported higher rates of standard practice than users reported experiencing.
STILL TO COME
How it was doneWhat they foundWhat it means for PTsWhat it means for OTsWhat it means for SLPs
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What it does not show
The study used a convenience sample recruited online, which may not represent the wider autistic adult population, particularly those without internet access or those who are more severely affected. Respondents were predominantly female and highly educated, which may skew results regarding the experiences of males or those with lower support needs. The survey relied on self-reported experiences and perceptions, which can differ between users and professionals, as seen in the large discrepancy regarding post-diagnostic support. The guidelines used as a benchmark (e.g., NICE) were not rigorously tested for their own effectiveness in improving outcomes, so alignment with them does not guarantee better patient results.
Declared interests
The study was funded by the European Parliament and the Italian Ministry of Health. No other specific conflicts of interest were declared in the provided text.
The easy way to misread this
Do not assume that because professionals report providing post-diagnostic support, patients are receiving it. The study shows a major discrepancy where professionals believed they offered these services, but the majority of autistic adults and carers reported receiving little to none.