‘I'm always up against a brick wall with them’: parents' experiences of accessing support for their child with a newly recognised developmental disorder

Abstract

Three of the most prevalent developmental disorders (DDs) are autism spectrum disorder (ASD), attention-deficit/hyperactivity disorder (ADHD) and fetal alcohol spectrum disorder (FASD). As part of a study screening for DDs in Greater Manchester, UK, a unique opportunity was taken to explore parents' experiences of receiving reports about their child's previously unrecognised DD. Six parents out of a possible 16 took part in interviews, which were analysed thematically. Findings drawn from parental responses revealed a number of barriers to accessing support for their child's additional needs, including perceived resistance from schools, particularly for quiet, well-behaved girls, and difficulty in accessing assessment or referrals. There needs to be greater awareness of additional needs in children without externalising behaviours, the presence of gender-specific differences in the presentation of DDs, and FASD as a commonly occurring DD. Ultimately, better support for children with DDs would reduce the burden of unmet needs for the children and their families, and for wider services.