Some parents who find out that their child has been diagnosed with autism are devastated. They grieve, they struggle to learn about the puzzling disorder and they fight to find help for their child. We did all of those things, too--but something drove us to do more. At first, we thought our journey would just be about one little boy--ours--but it quickly became much bigger than that. In fact, it's taken us on the ride of our lives.

Despite all of our combined political expertise, navigating the bureaucratic labyrinth in search of appropriate services for our son was a nightmare. Instead of finding help, we found waiting lists, excuses and outright discrimination against children with autism. As we drained our savings paying for private therapy and learned that others were doing the same, we knew we had to take action. We weren't sad any more--we were angry.

It began with letters, a few meetings with provincial politicians, and petitions. When that didn't work, we organized a rally outside the office of a provincial politician. It was kind of fun, so we organized another. And another. And another. After five rallies, the Minister in charge of autism services in Ontario called us in for a meeting. We told her what we wanted, but not much changed. We offered solutions, but the government offered excuses.

So we decided to have more rallies. Children with autism often engage in repetitive behaviors, we thought, so why not us? Within a few months our activities had created a grassroots organization called the Ontario Autism Coalition. The rally campaign lasted for almost two years--we held 25 in all. We started a website, got ourselves a logo and set about getting a whole lot of media attention focussed on the issue.

There have been a few positive changes that have benefitted children with autism in Ontario since we started, but we're far from done. Waiting lists for pre-school services are still measured in years, not months, we still don't have ABA in the school system here, and there is still no regulation of ABA therapists anywhere in Canada.

Our son is doing well and we've managed to put together an awesome team that supports him. But as we've criss-crossed the province meeting other families, we've heard stories from other families who haven't been so lucky. Families with more than one child on the spectrum, or families who don't have the same kind of advocacy skills we do. Single parents, new Canadians, families living in rural areas--they're all struggling. It's the knowledge of their challenges, and the experience of looking into their faces that keeps us motivated.

So until ALL children with autism have the services they need and deserve, we'll keep fighting.

Comments

Alex
August 21, 2007 - 2:16pm

Tosh, welcome to Changents and thanks so much for posting this story. It would be great to hear more about your activities including details about the challenges you've faced and how you've overcome them. You can add to your story by clicking "View My Info" in the upper right corner of the page (in the log in box once you are signed in). If there are Web-based actions people can take related to autism, you can attach an Action Pack to your story by clicking the "Recommend an Action Pack" button on the horizontal orange bar right below your story. Once you make the recommendation, a direct link to that Action Pack will appear on this story page.

We're glad you're here. Keep us posted!

Alex

tosh
November 22, 2007 - 2:23pm

Visit our website to see what we did during the recent provincial election campaign. Also, do a search for "Ontario Autism Coalition" on YouTube to see some of our video footage!

--Laura

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