Most children and teenagers with autism in Ireland are not receiving all the services that they need, a new study has shown.
The study by researchers at NUI Galway provides the first assessment of the level and nature of unmet service needs among children and teenagers with an autism spectrum disorder (ASD).
It also reveals the level of debt families face when trying to meet the needs of their loved ones with ASD.
The study includes a national survey that was carried out among 195 families with 222 children with ASD in 2014/15.
It revealed that 74% of children and teenagers did not receive one or more services that they required in the previous 12 months.
Examples of unmet needs included:
-88% of children aged between two and four years had an unmet need for speech and language therapy, as well as 57% of children aged between five and 12, and 61% of teenagers aged between 13 and 18
-79% of children aged between two and four years had unmet needs for occupational therapy, as well as 69% of children aged between five and 12, and 59% of teenagers between 13 and 18.
Some of the reasons given for having unmet service needs included being left on a waiting list for particular services and a lack of provision of services in certain areas.
The likelihood of experiencing unmet needs was significantly higher among those with a severe ASD, and those belonging to families were there were two or more children affected.
Meanwhile, 33% of families faced debts in the previous 12 months that were directly linked to their child's condition. The average ASD-related family debt was €3,260 per year.
Families with two or more children affected by an ASD were much more likely to have ASD-related debts in the previous 12 months.
According to the study's lead author, Áine Roddy of NUI Galway, these findings provide "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," she commented.
Ms Roddy said that there needs to be more investment in this area in order to improve the long-term outcomes for those with an ASD.
The researchers pointed out that last April, a motion was put before Dáil members to set up a parliamentary committee on autism and publish a National Autism Empowerment Strategy. At the time, this received unanimous political support.
However, Ireland is still waiting for delivery of this strategy.
The researchers believe that their findings have major implications for the future of such a strategy, as their study shows a significant level of unmet need and economic hardship among affected families.
It also shows that major issues exist in relation to current capacity, geographic inequalities and inadequately funded services.
Details of the study are published in the international journal, Health Policy.
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