Unmet autism needs put a third of families in debt

One-third of families that have a child with autism have fallen into debt in the past year due to the condition.

That's according to a new study published by health economists at NUI Galway which examined the level and nature of unmet service needs of children and adolescents with a clinically diagnosed autism spectrum disorder (ASD) and debt related to meeting the needs of such families in Ireland.

The study found that more than 74% of children and adolescents with an ASD did not receive one or more services in the previous 12 months.

Some 33% of families incurred debt in the previous year specifically due to the child’s/children’s condition resulting in an average ASD related family debt of €3,260 per year.

The study also found that ASD severity and 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 with an ASD were also significantly more likely to incur debt in the previous year due to the condition.

More than 61% of children had unmet needs because a required service was currently not being provided in the country, while 31% had unmet needs as a service was not being provided in their area. A total of 55% of children were failing to have their ASD needs met as a result of being on a waiting list.

Examples of the unmet service needs cited included occupational therapy, social skills training and speech and language therapy.

Lead author of the study Áine Roddy said 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," she said.

Ms Roddy said the next Government needed to invest in improving long-term outcomes and support autistic people and their families.

"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."

"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," she said.

The study is based on a national survey on the economics of autism spectrum disorder in Ireland among 195 families with 222 children aged between two and 18 years of age in 2014/2015.