Consensus statements on optimal adult post-autism diagnosis support and services: Delphi process following a UK survey of autistic adults, relatives and clinicians.
UK experts agree: every autistic adult needs automatic health-service follow-up after diagnosis, yet most get nothing.
01Research in Context
What this study did
Lineberry et al. (2023) asked 423 UK people what should happen after an adult autism diagnosis. The group included autistic adults, family members, and clinicians.
They used a three-round Delphi survey. Ideas that 70 % or more of each group rated as “essential” became the final consensus statements.
What they found
Fewer than 4 in the adults got any follow-up within 12 months of diagnosis.
Eleven clear statements emerged. Top item: every adult should have routine access to mental and physical health services after diagnosis.
How this fits with other research
Huang et al. (2020) already flagged the “limited post-diagnosis supports” gap. Sarah’s team now fills that gap by spelling out exactly what those supports should look like.
Vassos et al. (2023) found transition services exist on paper but are patchy in real life. Sarah shows the same patchwork continues after the diagnosis itself.
Hamama et al. (2021) tracked teens falling through healthcare hand-offs. Sarah finds the safety net is still missing once they become adults.
Why it matters
If you work with newly diagnosed adults, you now have 11 agreed-upon benchmarks to advocate for. Use them in service-planning meetings or when writing insurance justifications. Push for one clear referral path to mental-health and primary-care check-ups within the first year—no more “diagnosis and done.”
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02At a glance
03Original abstract
Research has identified types of support helpful to autistic people, for example, physical and mental health interventions, psycho-education, peer support, developing positive identities and affiliation with social groups. However, accessing suitable post-autism diagnosis support and services is extremely difficult. We asked autistic adults, relatives and clinicians about their experiences of receiving and delivering post-autism diagnosis support/services. In Stage 1, 343 autistic adults and 45 relatives completed a survey. They answered questions about their experiences of UK autism post-diagnosis support/services for adults within 12 months after receiving a diagnosis. Thirty-five clinicians completed a similar survey. Just over half of adults and relatives said there was a follow-up appointment or discussion about support after diagnosis. Fewer than 40% received any support/services in 12 months after diagnosis. We used information from the surveys to create 11 statements describing characteristics of appropriate adult post-autism diagnosis support/services. In Stage 2, we asked clinicians for their views on the statements - they agreed with all of them. For example, those adults are offered an additional follow-up meeting after diagnosis and have access to mental and physical health services. We shared results with autistic adults, relatives and clinicians at two events. Some autistic adults, relatives and clinicians were positive about post-autism diagnosis support/services. However, they described many areas for improvement. The study findings can be used to define, develop and improve the types of adult post-diagnosis support services.
Autism : the international journal of research and practice, 2023 · doi:10.1177/13623613221097502