By Paddy Henry
An NUI Galway study has found a staggering proportion of children and adolescents with an autism spectrum disorder (ASD) have unmet service needs.
The study, which was undertaken by health economists in the University, and was the first international study to examine the predictors of unmet service needs and debt while controlling for predisposing, enabling and need factors, revealed that services provided to people living with ASD were not adequate in 74% percent of cases.
Service needs were said to include access to occupational therapy, social skills training and access to speech and language therapy.
The report found that the unmet needs for social skills training were reported for 46% of 2-4 year olds, 47% of children aged 5-12 years and 61% of adolescents aged 13-18 years, Parental reports of unmet needs for occupational therapy for children showed 79% of children aged 2-4 years, 69% of children aged 5-12 years and 59% of adolescents aged 13-18 years had unmet service needs for occupational therapy in the previous 12 months. It highlighted that 88% of children aged 2-4 years had an unmet need for speech and language therapy, with 57% of children aged 5-12 years and 48% of adolescents aged 13-18 years also having an unmet need for speech and language therapy.
It is hoped that the study will help shape policy ahead of the launch of Ireland’s forthcoming National Autism Strategy.
The findings from the study, based on a national survey on the economics of Autism Spectrum Disorder in Ireland among 195 families, with 222 children aged between 2 to 18 years of age in 2014/2015, show the financial impact ASD has on families, as well as the strain on services.
It found that 33% of families incurred debt in the previous 12 months specifically due to the child or children’s condition resulting in an average ASD related family debt of €3,260 per year. It also revealed that families that had two or more children with an ASD were significantly more likely to experience unmet service needs, while families that had two or more children living with the condition were also significantly more likely to incur debt in the previous 12 months specifically due to the child’s condition.
Áine Roddy, the study’s lead author, said that the study highlighted the scale of the work required in bringing the quality of services for children living with ASD up to standard, stating; ”The publication of this study provides timely evidence on the magnitude of unmet service needs and the susceptibility to future unmet needs experienced by children and adolescents who are autistic in Ireland. The financial and quality of life implications of not addressing the needs of autistic people with appropriate services and supports are profound. Policymakers need to understand that we need to spend in order to save, as research shows that autism is the most expensive condition internationally due to the substantial economic burden on State expenditure for adult assisted care provisions, institutional care costs and high unemployment rates (80%) among autistic adults”.
Last April, a motion put before Dáil members in Ireland to set up a Parliamentary Committee on Autism and publish a National Autism Empowerment Strategy received unanimous political support. Roddy argued that a national strategy on autism is “long overdue”, stating, “Ireland is still awaiting the delivery of an overdue National Autism Strategy which requires a framework that draws from evidence-based research in partnership with the autistic community”.