Life on the Spectrum

The headline reads “Federal Government Appoints New Autism Spectrum Disorder Working Group.” The aims of this group are “information sharing and research, early detection, diagnosis and treatment, and ways to support Canadian families affected by ASD.” Notice that it says “families affected,” not “autistic people.”

The members of this group are scientists, researchers, and heads or board members of various autism groups such as Autism Canada, Autism Speaks, Canadian Autism Spectrum Disorder Alliance and Autism Nova Scotia. There are no representatives from Autistic Self-Advocacy Network or other groups that represent autistic people ourselves rather than parents. In fact, there are no autistic people in this autism working group.

This is, sadly, not unusual. Autistic people are very seldom consulted by any government agency or autism service organization when they are making plans for us, if they actually are making plans for us and not just for autistic children. I have Tweeted to the federal minister responsible for this working group, the hon. Rona Ambrose, and I have left a comment on her announcement on her Facebook page, but I haven’t heard anything in response, probably because she, like everyone else in the federal government, is currently preoccupied with the upcoming election in October.

I don’t object to early detection of autism, nor do I object to support to families. However, I think there are many more goals that an autism working group could have rather than just support for families or just early detection and treatment. For example, how about working on the fact that the vast majority of autistic adults are unemployed and live in poverty? How about the fact that there are almost no support services for autistic adults once we leave our family homes? How about the fact that most so-called autism service agencies have no autistic people on their boards of directors?

If they want to work on diagnosis, how about creating and funding diagnostic services for those who were not diagnosed as children? There are many, many undiagnosed autistic adults out there who are unable to find anyone able or willing to assess an adult, and if they can find someone, they can’t pay for the assessment because the province they live in does not fund such services for adults.

The announcement about the working group is here. I encourage autistic adults living in Canada to contact the group and Minister Ambrose. Suggest what you would like to see addressed by this working group. Challenge the minister to add autistic self-advocates to the group. Her e-mail address is rona.ambrose@parl.gc.ca. Her website is ronaambrose.com. Her twitter is @RonaAmbrose. There is also contact information for the group at the link above.

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