Unpublished Op-Ed submitted to the Toronto Star
The Ford government’s clumsy attempts to deal with the issue of funding IBI therapy for autism is a short and long-term deception intended to placate irate parents.
IBI (Intensive Behavioural Intervention) therapy is a scientifically unproven short-term therapy although wildly popular with 25.000 children on the wait list. There are no longitudinal efficacy studies of IBI. It creates unrealistic expectations for parents that their children can be cured. They will not. The grim reality is that people with autism have a normal life expectancy and will be autistic all their lives. It is eerily reminiscent of FC or Facilitated Communication that was the rage thirty years ago. FC was, like IBI, expensive and intensive. It purported to assist those with autism to communicate with a simple touch of their facilitator. The entire scam was debunked when MIT ran a double-blind study that demonstrated unequivocally that it didn’t work. IBI may be headed in the same direction, building false hopes among desperate parents. Even if it is found to be effective, it is a short-term intervention, not a life support strategy.
The long-term problem is that society and the medical profession appear to have accepted autism as a a manageable, mysterious disorder not the devastating syndrome that it is. The media’s selective focus on high-functioning people with Asperger’s Syndrome and the movie Rain Man have contributed to this. The majority of those affected are moderate to severe. Part of this may also be that people with autism are physically normal and people and doctors have difficulty attributing severity to it as they do with other mental disorders.
In the long-term, funding children until they reach the age of 18 is a drop in the bucket. There is nothing for people with autism after that for the rest of their lives. Autism is debilitating across all areas of daily living. In our excessively democratically obsessed world parents are left to treat their children and adults with autism. It’s a relentless life sentence with no chance of parole. Support and long-term funding for autism is virtually non-existent. There are currently about 15,000 people on the wait list for residential placements according to the last ombudsman’s report. It’s hurry up and wait. Funding for the disabled generally is at a bare-bones minimum maintenance level no matter what government is in office.
Autistic people need specialized behaviour, speech and language, psychological and personal care all their lives. Again parents are tasked with seeking out and coordinating what care they can find. When you are diagnosed with schizophrenia, high blood pressure, high cholesterol, diabetes, cancer or dementia there is not a small window where money for therapy is provided and then cut off – it is provided as long as you need it – whatever the cost. The province funds expensive surgeries for children with cerebral palsy. We spared no expense to discover an HIV therapy to prevent the disease or when the polio epidemic hit in the 1950s. Autism needs to be treated the same way. It is a special, severe and complicated disorder that requires lifetime treatment. As with other mental health disorders, autism cannot be cured or managed by a medical model ‘silver bullet’ pill so people are left to languish on their own without treatment for the rest of their lives. This needs to change.
It is time that the government, the medical profession, psychologists and psychiatrists, parents and the caregiver community that support people with autism came together and defined autism and its therapies over a person’s life-span. All autism supports should be covered by OHIP to ensure effective care. The numbers are not small. With an occurrence rate of 1 in 66 in Canada when it was 1 in 400 thirty years ago there is reason to be alarmed not only by the sharp increase in the disease itself but also as to its causes. The need for a lifelong strategy for autism is critically necessary before the looming crisis hits as boomers die and their adult autistic children live on. What happens then? Autism is in desperate need of a greater awareness and a long-term strategy that takes the day-to-day guess work out of supporting those crippled by the disorder.
Autism s the canary in the coal mine.