Autism Awareness Day (April 2) is a time to reflect on the advances in treating this disease but it is also a time to reflect on how far there is still to go in making treatment universally affordable.
Writes Susan Merrell
Mornings are the worst time in the Jones household. Especially driving the children to school. The youngest Jones cannot tolerate driving in the right-hand lane. She screams hysterically, thrashes around in her safety harness and bites herself. This is alarming for the other children – downright dangerous for the driver.
Mrs. Smith’s son has developed an intolerance to hearing other children cry. In anticipation he now has a complete and uncontrollable meltdown every time he even sees another child. There are children everywhere. The Smiths haven’t left the house for over three months.
This is a sample of what life is like when your child has an Autism Spectrum Disorder (ASD).
Imagine living like that.
Autism: The statistics
Autism Spectrum Disorder affects one in 160 children. There’s no known cause and no known cure.
There is no blood test, x ray or CAT scan that can diagnose ASD. It’s a disorder where the symptoms are observed in behaviour. Children with ASD are commonly characterized by their inability to communicate in an appropriate manner. Many have severe speech delay. Most develop anti-social habits.
Untreated or maltreated, these children will get worse, becoming dysfunctional and maybe even institutionalized adults.
The good news: there is an effective therapy achieving remarkable results. It’s backed by scientific evidence. The bad news: it’s expensive.
A light at the end of the tunnel
The treatment’s called Applied Behaviour Analysis (ABA).
I’ve been treating children with ASD for over a decade now,”
said Paul Harris, Director of Momentum Learning Services, a Sydney-based company that provides therapy for children with ASD.
It’s simple, I use ABA because it works.
Several decades of research has conclusively proven the effectiveness of ABA. The first positive study was conducted by Lovaas in 1987 and was followed up in 1993 by McEachin, Smith and Lovaas wherein the children were re-appraised at 11.5 years.
Eight of the nine participants demonstrated intellectual and adaptive functioning in the normal range. Subsequently there have been other studies: Sallows and Graupner (2005), Cohen Amerine-Dickens and Smith (2006) and Eikeseth, Smith, Jahr and Eldevick (2007). All have registered positive results with ABA.
For Harris, the three essential criteria that he looks for in a treatment program are firstly, peer-reviewed research, secondly, practical quantifiable outcomes and finally, accountability through regular monitoring of progress. ABA satisfies all the criteria.
All children treated by Harris have shown improvements in their condition, most markedly.
Take Bryce, diagnosed with autism before age two. Bryce’s problems included severe language delay and obsessive behaviour like sucking his thumb until it bled.
Many therapies were tried with negligible effect. Then he began parent-funded ABA at age three.
When Bryce first came to me, I had never seen rituals so severe,
He engaged in these 90-100% of given opportunity. Some of his rituals involved spinning in circles, opening and closing doors (sometimes for up to two hours or more unless he was physically stopped) and stroking his own hair. He was aggressive when his rituals were interrupted and often self-injurious.
Now five years old, after intervention with ABA, Bryce is indistinguishable from his peers.
The sting in the tail
This is all good news for parents with autistic children. But then there’s the bad news. Due to its intensity, ABA is costly. Up to $AU50,000 per annum (treated in Australia) with, ideally, at least a two-year treatment span.
Regardless of the costs, many families are availing themselves of intensive therapy. They’re cashing in their superannuation or getting themselves into serious debt to fund it.
One of my family’s mortgaged their house and lived in a garage,
But then you would, wouldn’t you? What price a child’s future? And in many ways, they’re the lucky ones. Others do not have the wherewithal to ever raise the sort of money necessary.
Not doing all we can to improve these children’s lives when they are young is short-term thinking.
A report prepared by Synergy Economic Consulting for the Autism Early Intervention Outcomes Unit estimated that the annual cost to the taxpayer of autism was between $4.5 -7 billion, most, as a result of unemployment.
I’m no economist, but government funding of ABA would seem to me a much more cost-effective solution than letting autistic children go untreated or inadequately treated, limiting their potential and growing into adults who may need institutionalizing.