Consensus statements on optimal adult post-autism diagnosis support and services: Delphi process following a UK survey of autistic adults, relatives and clinicians.

This study found that most autistic adults in the UK don't get enough support after receiving their autism diagnosis. Only half had a follow-up appointment, and less than 40% received any help in the first year. Researchers created 11 recommendations for better support, including follow-up meetings and access to mental and physical health services. Healthcare professionals agreed with all recommendations, showing there's clear agreement on what good support should look like.

This UK-based Delphi study examined post-autism diagnosis support services for adults through surveys of 343 autistic adults, 45 relatives, and 35 clinicians. The research revealed significant gaps in post-diagnosis care: only half of participants had follow-up appointments and fewer than 40% received any support services within 12 months of diagnosis. Using survey findings, researchers developed 11 consensus statements describing optimal post-diagnosis support characteristics, which clinicians unanimously endorsed. These included offering follow-up meetings and ensuring access to mental and physical health services.

While some participants reported positive experiences, many areas for improvement were identified. The study provides evidence-based recommendations for developing and enhancing adult post-autism diagnosis support services.

Results highlight urgent need to improve post-diagnosis support pathways for autistic adults. The 11 consensus statements provide actionable framework for developing standardized post-diagnosis services. Healthcare systems should implement routine follow-up appointments and ensure accessible mental and physical health services for newly diagnosed autistic adults.

Sample sizes for relatives (n=45) and clinicians (n=35) were relatively small. Study methodology is not clearly specified beyond being described as a Delphi process. Geographic scope limited to UK context may affect generalizability to other healthcare systems.

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.