Canada's Original Think Tank

Autism Families in Crisis — Inquiry

Autism Families in Crisis — Inquiry

Autism Families in Crisis — Inquiry

Hon. Art Eggleton: Honourable senators, I rise today to speak to the inquiry on autism tabled by Senator Munson.

I had the pleasure of chairing the Standing Senate Committee on Social Affairs, Science and Technology when we conducted the study of Pay Now or Pay Later: Autism Families in Crisis. It has been 10 years since that study was completed, yet we are still contending with some of the very basic problems we encountered a decade ago.

Over the course of that study, the committee struggled not only with the complexity of the issue but also with the varying opinions that were on offer. For example, the committee heard, on the one hand, that although there has been a rise in the number of cases of autism, this was due to increased sensitivity and changes in the diagnostic criteria. On the other hand, other witnesses stated that there is in fact an autism epidemic of staggering proportions.

Moreover, we are still not entirely sure what causes autism in the first place. Research on identical twins suggests that genes likely play a dominant role, and yet other studies have suggested that environmental factors play a role as well.

That these debates are still ongoing highlights the complexity of the issue. Yet, our job as policy-makers is not to debate the science; rather, it is to take what we know and try to make life more manageable for the individuals with autism and their families.

What we know is worrying. At the time of our study, 1 in 166 Canadians per year were being diagnosed with autism spectrum disorder. Today it is 1 in 68.

Being autistic or having an autistic family member increases your chances of financial hardship. A staggering 80 to 85 per cent of adults with ASD are unemployed or underemployed. On average, the cost of raising an autistic child in Canada is estimated to be at $60,000 a year. Compounding the problem is that, more often than not, one parent will quit their job to care for the child.

Our study contained a number of important recommendations meant to tackle these and many other issues, the most important of which was that the federal government, in collaboration with the provinces and territories, establish a comprehensive national autism strategy. Ten years later, we are still not there.

This failure to act has had very real consequences. In 2014, the Senate Liberals held an open caucus on autism. We heard testimony from those with autistic children, and those with autism themselves. What we heard were stories of families uprooting their lives to move where they hoped better programs would be available. One family moved from Ontario to Quebec because they could not find an appropriate level of service in French. Another family actually moved to Australia because of inadequate supports here.

These and other stories highlight a missed opportunity. Continuing study is finding that we are squandering the potential of those with ASD. In the workplace, many of the characteristics you typically find in someone with autism make them suitable for certain professions. For instance, some individuals with ASD will demonstrate an uncommonly focused interest in a particular subject. This can be a boon for an employer if that interest fills a need.

I read of one individual with Asperger’s syndrome who, when asked what he most enjoyed about his job, answered, “solving software engineering problems.” Then he was asked what his favourite hobby was, and his reply was “solving software engineering problems.”

What is good for the individual is also good for society. An autistic individual with gainful employment is one less person who relies on social services to get by. Of course, not all individuals with autism will succeed in the workplace, but too many are not even being given the chance.

In the 10 years since our study, the method of diagnosis has also advanced. By the age of 2, a doctor can often discern from a questionnaire filled out by the parents whether a child has autism. If caught at such a young age, certain treatments can encourage learning and interaction during a time when the brain is most malleable. Yet, the average age of diagnosis in Canada is four and a half, often too late for these therapies to have their intended effect. That is a shame. One American study showed that if caught early enough, these therapies paid for themselves within eight years by reducing the need for extra help in school.

That, honourable colleagues, is just one example of what is meant by “pay now or pay later.” The right investments today can prevent higher costs in the future. More important, such investments will go a long way in improving the circumstances of those diagnosed with autism and their loved ones.

I would ask you to join Senators Munson, Housakos and Bernard in calling on the federal government to act on the recommendations of our report. Only then can we begin to improve the lives of those affected by autism in a very meaningful and lasting way.