Incorporating Psychoeducational Care in the Autism Diagnosis Pathway: Experiences, Views, and Recommendations of UK Autistic Adults and Autism Professionals.

Abstract

Background: When someone receives a diagnosis they may need support with information and emotional needs. These are called psychoeducational needs. For adults diagnosed with autism, these can include needing to understand and make sense of the diagnosis and finding self-management strategies that work for them. When autistic adults do not receive the psychoeducational support they need their mental health and self-confidence in managing everyday life is affected. However, many diagnostic services do not provide psychoeducational care. In this study, we investigated autistic adults' and autism specialist staff's views on the psychoeducational care that diagnostic services should provide.

Methods: We recruited 26 autistic adults and 30 staff working in 8 UK autism services commissioned to provide both diagnostic assessments and post-diagnostic care. The staff sample included five autistic adults employed as "experts by experience" to co-deliver psychoeducational support. We used group discussions (or, where required, 1:1 interviews) to explore their views and experiences.

Results: Study participants believed psychoeducational needs arose during the assessment process (e.g., possible emotional reactions to diagnosis), and when the diagnosis is divulged (e.g., managing disclosure) as well as during the weeks and months following diagnosis. In this period, study participants agreed that the psychoeducational care offered by diagnostic services should include a debrief appointment, psychoeducation program, and the provision of "curated" information. That is, information resources carefully selected by staff and in multiple formats (e.g., text-based, videos). Study participants believed autism professionals and "experts by experience" had distinct contributions to make in meeting psychoeducational needs.

Conclusion: Findings support the case for diagnostic services to have the resources to address psychoeducational needs across the diagnostic pathway, including the offer of a debrief appointment and group-delivered psychoeducational program (with the option for 1:1 delivery) post-diagnosis. "Experts by experience" should be integral to the development and delivery of psychoeducational care.