Friday, October 9, 2009

Autism Matters Summer 2009 Edition

Some time ago somebody forwarded me a link with the summer edition of the Autism Ontario newsletter. It is posted here.
I scanned through it, then read it more thoroughly. I went to the Autism Ontario website and read their mission statement. Here is what I found:

Autism Ontario (formerly Autism Society Ontario) is the leading source of information and referral on autism and one of the largest collective voices representing the autism community. Members are connected through a volunteer network of Chapters throughout the Province of Ontario.

We are guided by a Board of Directors, composed primarily of parents of individuals with autism, plus a host of volunteers and respected professionals who provide expertise and guidance to the organization on a volunteer basis.

Autism Ontario is dedicated to increasing public awareness about autism and the day-to-day issues faced by individuals with autism, their families, and the professionals with whom they interact. The association and its chapters share common goals of providing information and education, supporting research, and advocating for programs and services for the autism community.

Autism Ontario is the biggest advocacy group and the first place parents of newly diagnosed kids with autism are referred to go to for help. How confusing it must be for those parents to read the newsletter and find nothing there that reflects their situation. There is no mention of the 3-4 year long waiting list for therapy; there is no mention of discharging kids after few months of finally receiving said therapy. Nor does the newsletter make mention of the thousands of children of all ages who need therapy and do not receive it. If this is advocating for autism in Ontario it is definitely a "soft touch" advocacy (soft on the Ontario government).

Ironically, the cover of the issue has the facade of the building I've got to know so well lately.


  1. Well said, Maryna. Advocacy means clearly and publicly acknowledging the deplorable circumstances faced by families as a result of inadequate government autism intervention policies, and taking action to express disapproval and to fight for positive change and social justice. This is not being done by Autism Ontario.

  2. Maryna,
    Many of us parents of children who were diagnosed a few years before yours know that the ASO or AO or whatever they call themselves is a misnomer. They could call themselves the Society for the Preservation of Autism. They have "Executive Directors" with jobs and are paid to be the so-called voice of the community. Today in the House of Commons there was a debate on Bill S-210, Senator Munson's bill to raise awareness of autism by declaring a particular day autism awareness day. I caught some of the debate on CPAC. Two of the MPs mentioned in the House that they first learned about autism from a parent who was protesting on the Hill with a sandwichboard sign. That was me. I started doing that in 2004. I did not hear the MPs mention the Autism Society of Canada or any province as being a source of information, and certainly not the first source which raised with them the plight of the autism community. Many of us bought memberships when our kids were diagnosed because we read that they were our "voices". But it did not take long to find out that that was BS. Not only does the charitable status restrict their political lobbying to 10% maximum of their activities, but the governments' grants and contracts effectively co-opts them. The best advocacy organizations are not for profit outfits like FEAT of BC who sued the government and took their winning case up to the SCC before the SCC keeled to the pressure from governments. Forget the ASO and ASC. They are obstacles and irrelevant.