How does an autism diagnosis impact a child and their carer in regional Australia?

Autism spectrum disorder (ASD) is a common neurodevelopmental disorder. This study aims to investigate the impact of an ASD diagnosis on children and their carers from a regional/rural Australian perspective.

A three-part survey development study included: (i) Semi-structured individual ASD carer interviews to identify common themes; (ii) survey development and testing; and (iii) online survey circulation to wider group of carers, for data collection and analysis.

Transcripts from eight carer interviews guided the development of 65 survey questions. The survey was circulated to 316 carers of children diagnosed with ASD. Of the 101 respondents, 95% were female, 86% regional and 12% were rural inhabitants. The average child's age at diagnosis was 6.64 years. Most carers (93%) reported that diagnosis of ASD met their goal, for some an improved understanding of their child's behaviour (39%) and allowing access to therapy (16%), government disability funding (National Disability Insurance Scheme) (19%) and learning support (9%). Some (44%) reported no downsides to an ASD diagnosis; however, 38% reported fears of discrimination, particularly with future relationships (5%) and employment (14%). Barriers included waiting times (16%), costs of appointments (9.9%) and difficulty navigating through the health system (5.9%). Only five participants reported having no costs associated with appointments.

Carers had positive attitudes and experiences regarding their child's ASD diagnosis. The benefits outweighed the perceived harms. Barriers to accessing services included waiting times, out-of-pocket expenses and travel distance.