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 UK

Abstract

Abstract Background: Families face long waits for their child to undergo a diagnostic assessment for possible autism. This study explored the experiences of parents and children/young people (CYP) accessing, and professionals providing autism diagnostic assessments in the United Kingdom (UK). Method: This realist evaluation was conducted in three phases: 1) Interviews and focus groups with parents, CYP, and professionals, from six UK National Health Service (NHS) childhood autism diagnosis services. 2) Resulting qualitative data was analysed and programme theories (PTs) explaining how, why and in what contexts childhood autism assessment and diagnosis pathways work well were tested and refined. 3) Recommendations for change were developed by the research team and presented to delegates at six dissemination events including 250 clinicians, managers, parents/carers, commissioners, and academics involved in autism assessment and diagnosis. Delegates were invited to select and rank the most important recommendations. Results: There were 121 participants in Phase 1 (18 CYP, 34 parents, 69 professionals). Phase 2: Both families and clinicians confirmed challenges in the assessment and diagnostic process, including increased demand for assessments and insufficient numbers of specialist multi-disciplinary team (MDT) practitioners to provide adequately skilled workforces. The need to support families across the whole assessment and diagnostic process was seen as key to providing a quality service but was often not possible. Steps taken to improve the process were identified and seven PTs covering: improving recognition of children needing referral, referral processes, service organisation, professional skill-mix, assessment, feedback/report writing, and training/service evaluation. Phase 3. During consultation twelve recommendations were selected as most important for change. Conclusions: Several strategies for improving services were identified that may reduce waiting times and increase acceptability and quality of childhood autism assessment and diagnosis services.