1st Session, 42nd Parliament
Volume 150, Issue 146

Thursday, October 5, 2017
The Honourable George J. Furey, Speaker

Autism Families in Crisis

Tenth Anniversary of Senate Report—Inquiry—Debate Continued

On the Order:

Resuming debate on the inquiry of the Honourable Senator Munson, calling the attention of the Senate to the 10th anniversary of its groundbreaking report Pay Now or Pay Later: Autism Families in Crisis.

Hon. Mobina S. B. Jaffer (Acting Leader of the Senate Liberals): Honourable senators, I rise today to speak on Senator Munson’s Inquiry No. 31.

May I have permission to sit and speak, please?

The Hon. the Speaker: Yes, Senator Jaffer.

Senator Jaffer: Thank you.

I wish to act on the Standing Senate Committee on Social Affairs, Science and Technology’s report named Pay now or Pay Later: Autism Families in Crisis.

Before beginning, I would like to thank Senator Munson for his tireless work to ensure that people with autism and their families get the support they need.

Hon. Senators: Hear, hear!

Senator Jaffer: He has, for a very long time, been truly a champion of people with autism. The subtitle of the report this inquiry deals with, Autism Families in Crisis, perfectly describes the situation for many families of the 1 in 68 Canadians, or approximately 530,000 Canadians, who are affected by an autism spectrum disorder.

Families are often forced to wait for unacceptable periods of time to get their children the services they need. For example, speech therapy and behavioural therapy can have wait lists that go as long as several years.

Given how children need this therapy during their youngest years, while they are still in their developmental period, this often means that the therapy is far less effective by the time it is received.

Other families struggle to pay the cost of supporting their child with autism spectrum disorders. In many cases, publicly funded health insurance only covers a fraction of the support that a child may need, meaning that parents are forced to pay the rest out of their own pockets.

Given that therapy for autism spectrum disorders can cost as much as $60,000 every year, this often means that parents must make great sacrifices to provide their children with the support that they need to learn and succeed.

Finally, many families are struggling to deal with the stigma and silence that still surrounds autism spectrum disorders, which causes many cases to go undiagnosed through those crucial first years of the developmental period.

Recognizing how serious this issue was for Canadians, the Standing Senate Committee on Social Affairs, Science and Technology conducted a study to find a solution for this issue 10 years ago, with Senator Eggleton as the committee chair and with Senator Munson, Senator Mercer and Senator Watt also participating.

This study resulted in the report that this inquiry presented to the government entitled Pay now or Pay Later: Autism Families in Crisis.

While the study covered a large variety of areas related to autism in Canada, there was one clear message sent by this report: Canada needs a national strategy on autism. As Senator Munson mentioned yesterday, or the day before, there have been some improvements since the report’s publication.

There is now an autism spectrum disorder surveillance system that keeps track of data around the country regarding autism. Our government also spends $8 million every year on research and funding employment programs for people with autism spectrum disorders. Outside of the government, awareness about autism has also reached unprecedented levels, meaning that more voices than ever before have joined the discussion.


However, as Senator Munson also said yesterday, there is still a lot of work to be done. If we truly wish to help the families that are struggling to provide their children with the supports that they need help their children succeed, we need to specifically create federal targets and programs that will accomplish that very goal. We need a national strategy on autism spectrum disorder.

If we wait, countless Canadians will continue to suffer. I have heard many stories from families who have had to make great sacrifices to support their children with autism. I’ve heard from parents who mortgage their homes to cover the massive costs of therapy. I’ve heard from parents whose physical and mental health deteriorate as they are forced to deal with the very challenging task of caring for a child with autism without any form of support. I have heard heartbreaking stories of children who face horrible bullying because they suffer from autism spectrum disorder. Finally, I have heard pleas from parents who feel helpless as their children face challenges throughout their youth and are unable to cope without the supports they need.

Honourable senators, this month is National Autism Awareness Month. This month I urge you all to support this inquiry and to urge our federal government to create a national autism strategy. Families across Canada with children suffering from autism spectrum disorder are calling for our government to show national leadership on this issue.

Honourable senators, if there was any group of children that needed our support, it is this group of children; children who suffer with autism.

Let us add our voices to this message. Thank you.

(On motion of Senator Omidvar, for Senator McPhedran, debate adjourned.)