Autism Is Not A Severe, Even Deadly, Disorder? Susan's Story Says Otherwise

The following letter (addressee's name edited by me to protect that person's privacy) was sent to a long time New Brunswick autism advocate by Autism Society Canada Executive Director Kathleen Provost.  It tells the story of Susan, the devoted mother of an autistic child who struggled for years to obtain services and a positive life for her child with autism, and who ultimately took her own life.  The letter tells of the enormous challenges faced by Susan and the toll those challenges took on her.  Kathleen Provost of the ASC disagrees with those who say that autism is not a deadly disorder.  Susan's story is evidence of the strong challenges faced by those with severe autism challenges and the family members who care for them.   

... a national voice since 1976

Dear ***

I am sitting down, pen in hand, ready to talk to you about Autism Society Canada (ASC).

I have 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 have made at the Federal level; a list of hurdles that are still ahead.

But I hesitate.

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).

Her Story...

About six weeks ago we 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 quite 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 span 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 do not know the deceased personally, nor am I aware of their connection to Autism Society Canada.

This case is different.

A couple of weeks ago 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 ASD.  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 told me that Susan had taken her own life.

Losing Susan should not have happened.

I have choosen 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. 

I ask you to help us help parents, like Susan, like Jan.

Susan’s mom would like the gifts received in her daughter’s name to sponsor available programs.

Please make a donation today, your support will make a difference.  Click here to access our secure online donation link: http://www.canadahelps.org/CharityProfilePage.aspx?CharityID=s42156 .

Thank you in advance for your compassion and your kindness.  If you would like more information on Autism Society Canada, please visit our web site at www.autismsocietycanada.ca.

Wishing you peace this holiday season.

    Truly yours,

Kathleen Provost

Executive Director

PO Box/C.P. 22017, 1670 chemin Heron Road, Ottawa, ON K1V 0C2      Phone/Tél: (613) 789-8943

E-Mail:  info@autismsocietycanada.ca    Website: www.autismsocietycanada.ca

Charitable registration number:  13160 7657 RR 0001