What parents want in an autism diagnostic report: An interview-based study of parents accessing a neurodevelopmental assessment service.

Researchers interviewed 30 parents whose children were recently diagnosed with autism to find out what they want in diagnostic reports. Parents said they want reports that are detailed but easy to understand, clearly organized, and written sensitively. They wanted a summary of key points at the beginning, clear sections, explanations of what happened during the assessment, and practical suggestions based on their child's specific strengths and needs.

This qualitative study interviewed 30 parents whose children recently received autism diagnoses from a neurodevelopmental assessment service in Northeast England to understand their preferences for diagnostic reports. Using thematic analysis, researchers identified ten key recommendations for improving diagnostic reports. Parents emphasized wanting detailed, balanced, and sensitively written reports that are accessible and clearly structured. Key elements included parent-driven summaries, clear report structure signposting, descriptions of the assessment process, and practical, personalized recommendations based on individual strengths and difficulties.

The findings provide direct stakeholder input for improving autism diagnostic reporting practices.

Assessment services should restructure diagnostic reports to include parent-friendly summaries, clear organization, and personalized recommendations. Reports should balance comprehensive information with accessibility, incorporating sensitive language and practical guidance for families navigating post-diagnosis support needs.

Small sample from single service location limits generalizability. Study limited to parents of recently diagnosed young people, excluding other stakeholders and age groups. Qualitative design provides depth but not quantitative measures of preference strength.

Diagnostic reports are a key outcome of autism assessment services. However, there is limited evidence regarding what key stakeholders, including families, want to see in reports. In this project, 30 parents whose young person had recently received a diagnosis of autism from a Neurodevelopmental Assessment Service in the North East of England took part in a telephone-based interview to explore what they want from a report. Interviews were analysed using thematic analysis.

Ten key recommendations for reports were identified. Parents indicated that they want a detailed, balanced, sensitively written report. They highlighted that reports needed to be accessible and clearly structured. In this respect, it might be helpful to include a parent-driven summary of key points at the top, clear signposting of the structure of the report, and a description of what happened in the assessment process.

Parents also valued practical, personalised recommendations based on the young person's strengths and difficulties. Future research might explore perspectives on reports in families accessing other services, in other client groups (e.g., families of pre-schoolers diagnosed with autism), and with different stakeholders, including schools, referrers and autistic people.