Published on Monday November 12, 2012
RANDY RISLING/TORONTO STAR
Technician Cherry Lan works in the sequencing lab at Beijing Genomics Institute. BGI, partnered with Autism Speaks, is currently sequencing 10,000 DNA samples from autistic children from around the world in an attempt to identify all the genes associated with autism.
In the brain of an autistic child, razor-thin neurons that normally transmit messages in rapid speed instead look like a twisted jumble of wires.
It is this tangled mess that turns lives upside down, creating children who cannot connect emotionally, students who cannot function in school, and adults who risk having no role in society.
Simply put, autism limits lives. And despite research that proves early treatment makes an enormous difference, the Ontario government is doing far too little to give our autistic children a future.
The tragedy of this lost potential — and the ways to make it right — is the focus of a Star series called The Autism Project.
A team of reporters is telling readers about the tragedy of long waiting lists for time-sensitive treatment, the Hospital for Sick Children’s role in an international quest to find the autism genes and the struggles of autistic students, when extra help is at the discretion of each school board.
Their stories illustrate the potential of the autistic mind, and how its promise can be smothered by a barely existing government system that operates in disarray.
With no single Ontario agency to help children get a diagnosis and treatment, parents stumble from one bureaucracy to the next. Eventually most give up, and may seek private care by re-mortgaging their homes — if they’re lucky enough to own one.
For reasons not quite clear, the diagnosis of autism is increasing. One in 88 North American children now has the condition. It costs parents up to $100,000 a year to get private treatment, and in Ontario government-funded programs are so scarce that most children wait years before getting help.
One of the glorious things about the human brain is that it is extremely malleable when young. With many autistic children, early behavioural therapy can essentially re-wire it to function more normally.
With this intervention, children who showed severe symptoms at the age of one may have none by their fourth birthday. But they must get help during the brain’s “critical window,” the period between 18 months and seven years.
After that, it may be too late. And that is Ontario’s shame.
Not just because the province doesn’t give enough money for therapy, but because it has no defined system to gather children into a program that will get them timely help.
There is only one option for intensive therapy funded by the province, called “intensive behavioural intervention,” which teaches children to speak and interact through repetition and reward. There are now 1,400 kids in the program and another 1,700 who will wait up to two years for their turn.
And this is where the bureaucracy gets ridiculous.
Before families get that far, they must spend months — on a waiting list — to get a psychological assessment that will then decide whether their child can spend years — on another waiting list — for the therapy. If it wasn’t so heart-breaking it would be Python-esque.
It’s not just the child who suffers, so too do families. Marriages disintegrate, jobs are lost and life savings disappear.
It is true that many people with autism will find a place in society that allows them to explore and create, with great success.
Some, like Temple Grandin (portrayed by Claire Danes in an HBO movie), have made valuable contributions, often because their condition leaves them predisposed to intellectual obsession.
Grandin, who loves animals, pioneered changes in the livestock industry, discovering a way to give cows a humane ending on their way to slaughter. But long before she found her niche, Grandin had to survive the ridicule of teenage years – which autistic teenagers bitterly face today.
And for many, it doesn’t get better. With no specialized help growing older, they dread the invisibility of adulthood, because from schools to employers, very few are welcoming.
The government’s role is to care for society’s most vulnerable and when its refusal to do so creates another class of victims, something is terribly wrong.
To save parents from the soul-draining nightmare of our broken system, Ontario needs to create a provincial agency, an “autism office,” staffed by advocates equipped to strip away the red tape that binds children’s lives.
Stop wasting precious time.