J Paediatr Child Health. 2024 Nov 30. doi: 10.1111/jpc.16725. Online ahead of print.
ABSTRACT
AIM: 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.
METHODS: 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.
RESULTS: 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.
CONCLUSIONS: 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.
PMID:39614662 | DOI:10.1111/jpc.16725
