Experiences of diagnosing autism spectrum disorder: A survey of professionals in the United Kingdom.
UK diagnosticians say waits, tools, and follow-up are broken—echoing parent and minority-family reports worldwide.
01Research in Context
What this study did
Tonnsen et al. (2016) asked 116 UK professionals who diagnose autism about their day-to-day work. The team used an online survey. They wanted to know what goes wrong and what helps when families seek a diagnosis.
What they found
The pros said waits are too long. Tools miss kids who don't fit the classic picture. After the label, families are left hanging with no next-step plan. In short, the UK system has big holes.
How this fits with other research
LeBlanc et al. (2003) saw the same pain through parents' eyes. Scottish mums and dads were happier when staff listened, gave leaflets, and let them ask questions. Same fix points, different angle.
Lineberry et al. (2023) and Diemer et al. (2023) show the tools themselves are biased. Women and girls get missed because checklists still mirror old male-centric ideas. The pros in Tonnsen et al. (2016) flagged 'validity concerns with atypical cases'—these studies spell out who is being missed.
Klein et al. (2024) extends the story to race. Black and multiracial families in the US report providers dismiss their worries. Professional dismissal is no longer just a UK gripe; it crosses borders and cultures.
Why it matters
You can't fix what you don't name. This paper gives you the exact gaps UK diagnosticians admit to: long waits, blunt tools, poor hand-offs. Use it to push your own clinic. Add a brief female-profile screener, schedule a post-label meeting, and write a one-page 'what happens next' sheet. Small moves, copied across sites, shrink the gap families feel.
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02At a glance
03Original abstract
To date, research exploring experiences of diagnosing autism spectrum disorder has largely focused on parental perspectives. In order to obtain a more complete account of the autism spectrum disorder diagnostic process, it is essential that the views and experiences of professionals are heard. In this study, 116 multidisciplinary professionals involved in diagnosing autism spectrum disorder in the United Kingdom completed an online questionnaire exploring their experiences and opinions of three key areas of service: accessibility, the diagnostic process and post-diagnostic support. Although professionals were largely satisfied with service accessibility, around 40% of services were failing to provide timely assessments. Standardised diagnostic tools were perceived as helpful and were used consistently, but concerns were raised about their validity in detecting atypical autism spectrum disorder presentations (e.g. females). Several challenges regarding giving autism spectrum disorder diagnoses were reported; these included making sure caregivers understood the diagnosis, pitching information at the correct level and managing distress. Furthermore, the practice of 'upgrading' to a diagnosis of autism spectrum disorder in uncertain or complex cases was reported by many, albeit infrequently, and reasons for this varied widely. Professionals expressed dissatisfaction with post-diagnostic provision, especially onward and long-term support options. They also felt that service improvements were required across populations and across the three key areas of service.
Autism : the international journal of research and practice, 2016 · doi:10.1177/1362361315611109