The Significance of Autism Assessment Reports for Parents within the Wider Diagnostic Journey

Abstract

Autistic children may need a range of targeted supports, and parents of autistic children encounter various challenges. Existing research shows that the diagnostic journey is lengthy and stressful for parents. Despite an increasing body of literature into parent experiences of the diagnostic process, very little research has looked at parental perceptions of autism diagnostic reports. No research has investigated parent uses of reports. This mixed methods study investigated how parents used autism reports and how helpful and readable they found them, and explored the significance of reports for parents within the wider diagnostic journey. 34 parents of autistic children responded to an online questionnaire including both multiple choice and free text responses, and 5 questionnaire participants also took part in semi-structured interviews. The most commonly reported uses of reports related to the child’s education. Reports were largely considered to be easy to understand, but factors that make them harder to read, including parent emotions, use of jargon and raw assessment scores without context, are discussed. Six themes regarding report significance in the wider diagnostic journey were generated using reflexive thematic analysis: ‘The importance of proof of diagnosis for validation and understanding’, ‘Gap between what is promised and delivered’, ‘Report marks one stage in a journey’, ‘Grief facilitates moving forward’, ‘Increased awareness of difference’ and ‘Peer support bridges gaps’. Questionnaire findings are considered in the context of interview themes. Implications for clinical practice and research are discussed.