Speaking Notes re: Standing Cttee on Health – review of Bill S-206
October 16th, 2012 But I hesitated.
Because what I really want to talk to you about are people. I especially want to talk to you about family members and caregivers; those very people who are challenged on a daily basis to support and care for a loved one living with an Autism Spectrum Disorder (ASD).
Let me share with you a story... A little while ago Autism Society Canada received a memorial donation from someone who, I suspected, wanted to send a gift to a charity in lieu of flowers. We are always appreciative of those who think of us at a time that must be extremely difficult. Then the next day we received a few more donations in memory of the same person.
Her name was Susan.
A couple of days passed, and yet a few more memorial donation came in for Susan. (This is not totally uncommon. Our organization may receive quite a few gifts in memoriam during the course of a year). However, I thought to myself that Susan must have been a pretty special person to have so many friends and family members who cared about her... and I felt as if Susan herself was sending us all her flowers. As is often the case with memorial gifts to a national organization: I normally do not know the deceased personally, and I am often unaware of their connection to Autism Society Canada.
This case would be different.
A couple of weeks after the first memorial gift, I received a letter from Jan, Susan’s mother. She wrote to me to tell me about Susan. You see, Susan was a mother of a child living with an Autism Spectrum Disorder. She told me about how Susan fought for five years with her local school board to get her child in an appropriate class. She told me how Susan’s child did not have friends at school or in the neighbourhood. She told me how Susan felt that she had failed as a mother and as an advocate for other children with autism.
She also told me that Susan had taken her own life.
Losing Susan should not have happened.
I have chosen to recount this tragedy, which is an extreme case, to illustrate a point: there is a misnomer out there that autism is not deadly.
I beg to differ.
Awareness of Autism is clearly lacking.
I applaud Bill S-206, an Act respecting World Autism Awareness Day, which by definition takes on this issue. Ignorance of Autism can no longer be an excuse.
For Canada, this Act is essential to support the many Autism organizations striving to work together on behalf of individuals living with an Autism Spectrum Disorder and their caregivers across this country.
Bill S-206 also gives Canada a unique opportunity to demonstrate leadership in this area to the international community.
In closing, I would like to reaffirm the need to raise awareness on Autism Spectrum Disorders, so that tragedies like the Susan’s never reoccur. Autism Society Canada has a broad reach – our member societies work in direct contact with families, care-givers and individuals living with an ASD across this country. Our societies inform us that access to services from one province to another is indeed unequal – there exists glaring gaps in treatment and resources across this country. We believe it is time to address this, we believe it is time for a National Autism Strategy in Canada.
I would like to thank you, Madame Chair and members of this committee for your invitation to be present with you today. Thank you also to Senator Jim Munson, for your unwavering dedication in pursuing Canada’s full support of World Autism Awareness Day.
Autism Society Canada
Madame Chair, Committee members, Senators, Members of Parliament and guests:
I want to thank you for allowing me to represent Autism Society Canada as we give our wholehearted support to Bill S-206, an act respecting World Autism Awareness Day.
Last night, I sat down pen in hand, ready to make some notes about what I wanted to speak to you about today regarding our support of Bill S-206. I gathered all my notes beside me, including: the number of committees that ASC has, as well as their challenges and their successes; news on the advances that we had made at the Federal level; a list of hurdles that are still ahead.