I’ve been thinking a lot about Autism Speaks lately and why it rubs me the wrong way. There are a lot of logical reasons I don’t like the organization – questions around their finances, the lack of autistic individuals involved in the organization and how they eclipse fundraising efforts of local charities who provide much needed services to autistic individuals and their families in Edmonton and Alberta.

But ultimately, it comes down to the fact that I don’t like what Autism Speaks tells the world about my son and my family. And I don’t like what Autism Speaks tells my son about himself.

My son is autistic. He is high functioning, though language delays prevent an Asperger’s diagnosis. He’s come a long way from where he was at age three, where we couldn’t seem to connect with him and 90% of his day was made up of routines. For his vast improvement, we have the combined efforts of Alberta Health Services and the Edmonton Public School Board’s Early Education program to thank. Despite what you may think, these two huge organizations worked seamlessly together to provide my son with incredible OT, PT, SLP and child psychology/psychiatry services.

Thanks to all of this, he now attends a regular school with part time help from a TA, has made friends and is a welcome part of the school community.

To be honest, I have no concerns about my son’s academic abilities. What worries me are his social skills and how he’ll navigate the emotional minefield of adolescence.

Lacking a crystal ball, I’ve spent a lot time on-line reading about the challenges autistic teenagers face. And you know what? There’s a whole culture of self-described “auties” who like the fact that they’re autistic. Yes, they wish there were some aspects of their lives that were easier, but overall, they like being quirky and focus on their strengths and abilities – they have no desire to not be autistic. They like themselves, they value themselves and are just waiting for everyone else to catch up and realize how awesome they are too.

This is what I want for my son – I want him to be proud of the person he is – all of himself, which includes his autism.  I don’t want him to feel like he needs to be “cured” and I don’t want him to feel like he’s got a sickness or a disorder. He doesn’t “suffer from autism” and he doesn’t need anyone’s pity – maybe just some understanding.

Another thing about those self-loving autistics? They HATE Autism Speaks. They hate that the organization portrays them as broken and suffering – that who they are is a tragedy. They hate that Autism Speaks blames them for their parents’ marital problems or for being a financial burden. They hate that Autism Speaks spends so much of its resources trying to find a cure for what they find unique and valuable about themselves.

I don’t know if my son will end up with that level of self-awareness about his autism. But I hope he does and I hope that he ends up liking the person he is and being proud of what he contributes to the world. Isn’t that what every parent hopes for their child?

Because of that wish, I choose to not support an organization that I believe fundamentally works against it. I’m siding with the kind of autistic people I hope my son will be.

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Disclaimer: I understand that every autistic person is different and other parents of autistic children may have a different opinion than mine. For many parents, Autism Speaks does indeed speak for them and they want to support their message and research by participating in the charity walk.

However, I would also encourage those families and their supporters to keep their autism charity dollars in their community and donate to local organizations as well. It’s these organizations that help families get needed treatment and services for their children and help improve the lives of autistic people and their families in the here and now.

Two local Edmonton organizations to consider:

Autism Society of Edmonton Area

Children’s Autism Services of Edmonton

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