What do you do when you discover your child has autism and that there are near-to-no specialised services available to help your family?
What do you do when you discover your child has autism and that there are near-to-no specialised services available to help your family? The answer may seem like a no-brainer – do it yourself! New research by the leading US Autism Speaks charity has shown that parent delivered therapy, if done correctly, can be more effective than intensive specialist intervention alone.
There is no medication to treat autism, but early intensive behavioural therapy using methods such as ABA (Applied Behavioural Analysis) can significantly improve the lives of people with an Autism Spectrum Disorder (ASD). Parents, carers and teachers have all too often been left in the wings when it comes to using such methods. No more, says Michael Rosanoff, director of public heath research at Autism Speaks: ‘If you deliver parents with basic skills sets on how to deliver these interventions they can in fact be more effective than intensive specialist intervention alone. Autism Speaks has made this a priority in understanding how we can make services more available to families by working with members of the community like parents and teachers.’
These findings could not come at a better time – whilst the prevalence of the disorder is growing the shortfall in specialist services is becoming more acute. The United States, one of the most advanced countries in autism research and diagnosis, estimates that 1 in 68 children is affected by and ASD. No one knows why, but boys are five times more likely to have the disorder.
As a parent of a child with autism I welcome and fully appreciate the positive nature of this research, however do sound a note of caution. If our experience is anything to go by, we have frequently been worn out with the daily struggle of caring for a gorgeous but at times deeply troubled child. I am wary that such research could put the onus of responsibility on already exhausted parents potentially pushing some over the edge. There is also a concern that authorities which might already failing in their duty of care, could use this to justify their poor lack of services.
However, with a significant number of children with an ASD excluded from school (in France the number out of mainstream school is a shocking 80%) many parents have had no choice but to take on the mantle of teacher and carer. Given that good autism care is expensive, I am sure many would be delighted to be given the tools to get down to work and provide them and their families which is a much needed ray of hope.