Wednesday, April 16, 2008

Facing Autism In Toronto and Oakville

Tomorrow I will be 'goin' down the road', flying actually, to Toronto and then on to Oakville where I will be speaking as part of a national autism awareness and advocacy campaign. I will be joining a team of dedicated parents and concerned citizens from FEAT-BC and FEAT Ontario who are advocating for a real National Autism Strategy; for the inclusion of autism in Canada's medicare system so that autistic children, wherever they live in Canada, will have access to effective evidence based treatment.

For me, the trip will be a homecoming of sorts. I worked in Toronto for a few years in the 90's. Both of my wonderful sons were born down the QEW at the Joseph Brant Memorial Hospital in Burlington. When Conor was born there 12 years ago I had almost no awareness of autism beyond some vague movie imagery of autistic savants. I did not know then what autism would come to mean for Conor or our family. Two years later I had returned to New Brunswick and after Conor's diagnosis became immersed in the world of autism and, by necessity, autism advocacy.

For that time, Conor was diagnosed at a relatively early age, 2 years. He was diagnosed after tests and observations over a period of several months which also occurred after time waiting for our appointment with the pediatrician. We had sought medical assessment because of lack of speech, lack of interaction of the kind that a child usually shows with their parents and because of a variety of odd behaviors.

When Conor was diagnosed there was very little in the way of autism specific services or information available in New Brunswick. Along with a number of other concerned parents I began my life as an advocate for my son, and for effective autism treatment, education, and residential care. Although much remains to be done, we have accomplished much for a small province lacking the financial resources of wealthier provinces. One of the tools we used to make gains for autism services in Canada was the trial decision in the Auton case, which was upheld on appeal by the British Columbia Court of Appeal but was ultimately overturned by the Supreme Court of Canada. Notwithstanding the SCC reversal the trial decision in Auton set out accurately the state of expert opinion on the effectiveness of ABA as a treatment for autism spectrum disorders, information that was very helpful in advocating publicly for the creation of autism specific services.

Notwithstanding the advances made since the trial decision in Auton Canada remains a patchwork quilt in terms of provision of autism treatment. Oil rich Alberta provides substantial funding for autism treatment until age 18 while next door in Saskatchewan they are just starting to provide autism services. A national autism strategy, inclusion of autism treatment in Medicare, is imperative if all autistic children in Canada are to benefit, and benefit fully, from intensive early intervention.

I will be honored to travel to Toronto and Oakville and join the people from FEAT Ontario, FEAT-BC (including people like Jean Lewis one of the "Auton" parents), and fellow speakers like Constitutional lawyer Deborah Coyne and autism's winter trek hero Stefan Marinoiu The Supreme Court of Canada effectively removed the courts and the Constitution of Canada as effective tools for helping ensure that autistic children receive effective evidence based treatment in Canada. We have to get political to ensure that all autistic children in Canada are treated equally and receive the treatment they need to prosper and grow. To accomplish such a large undertaking we all need to come together and advocate EFFECTIVELY for medicare for autism.

If you are interested in getting involved in advocating for medicare for autism I hope to meet you in Toronto and Oakville. See you there!

"Medicare for Autism Now!" Rally

Saturday, April 19th, 2008

2:00 p.m. to 4:00 p.m.

Iroquois Ridge Community Center,

1051 Glenashton Drive,

Oakville, Ontario, L6H 6Z4

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