Obtaining an autism spectrum disorder diagnosis and supports: New Zealand parents’ experiences

Abstract Background This study explored New Zealand parents’ experiences of obtaining an autism spectrum disorder (ASD) diagnosis for their child and aimed to identify factors that predicted parent satisfaction. Method Parents of ASD parent support groups were invited by email to participate in an anonymous online survey. Parents were asked to rate their satisfaction with a number of key aspects of the diagnostic process for ASD. Correlation analysis and ANOVA were utilized to explore possible associations between parent satisfaction and putative demographic and clinical factors and experiences. Multiple regression analysis was used to identify key predictor variables of parent satisfaction and stress. Results Parent (n = 516) satisfaction with the diagnostic process for ASD was endorsed by 53.1%. The strongest predictor was satisfaction with the diagnostic assessment report, followed by higher levels of parent stress. Higher satisfaction was also predicted by spending less time on a wait-list for assessment, multi-disciplinary assessment and the absence of concurrent ADHD. Most parents found the diagnostic process stressful. Only 23% of parents were satisfied with post-diagnostic supports, and just 19% their coordination. Conclusions Just over half of New Zealand parents are satisfied with the diagnostic process for ASD, despite most finding the process stressful. Streamlining referral pathways, reducing assessment wait-times and increasing rates of multi-disciplinary team assessment may raise satisfaction rates further. Receiving a satisfactory diagnostic assessment report appears to be of particular importance to parents. The very low rate of satisfaction with post-diagnostic supports indicates that further development of these services is a priority for NZ.