How can we improve the timeliness and quality of diagnostic assessment for children with possible autism? Qualitative findings and recommendations from a Realist Evaluation of Autism Service delivery in the United Kingdom.
Ian Male, William Farr, Sophie McGrevey and 13 others
Parents described years of not being heard before a referral and feeling abandoned after diagnosis.
Stakeholders ranked 12 service changes as most important. Support should not wait for a diagnosis to begin.
Key findings
1Many parents described years of stress and not being listened to when raising concerns, and some young people felt they were the problem rather than the system.
2At one integrated site, a strengths-and-needs assessment before referral reduced the number of families subsequently requesting diagnostic assessment by around 30%, though some parents felt it delayed access to diagnosis.
3Many parents felt abandoned after the diagnostic feedback session with no follow-up, and many sites did not routinely send the diagnostic report to the child's school, leaving parents to do so.
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 study is located in the UK NHS, with services funded through national taxation and free at the point of delivery, which limits generalisability to other healthcare systems. Realist evaluation interpretations are potentially provisional because the theories are developed in dynamic healthcare settings influenced by external factors such as political change. For families who had waited years to be referred, negative experiences may reflect older service delivery models rather than current practice. The study was conducted during the Covid pandemic, which affected the uptake of digital assessment approaches and may have shaped participants' views on remote methods.
Declared interests
Funded by NHS England via the Learning Disability and Autism Directorate (child and young person mental health transformation funding stream). The authors declared no potential conflicts of interest.
The easy way to misread this
Do not read the 12 recommendations as proven solutions. They are stakeholder-ranked priorities from a qualitative study, not tested interventions. The 30% reduction in assessment requests at one site is a single observation, not evidence the approach works.
Summarised by AI from the full paper, without a clinician reviewing it. Check it against the source before it changes what you do. Read it on PubMed →