Image: H kneeling on pavement focused on creating a chalk drawing comprised of a blue puzzle piece surrounded by a red circle with a diagonal line through it. Beside the circle is a drawing of a fist with the thumb pointing down. Text reads: “I am not a puzzle – do not support A$” Watermarked: Thirty Days of Autism: Leah Kelley

So, some people may wonder why I do this activism stuff with my son… and some might even think that it would be better to shield him from what Autism Speaks says about Autistic people.

If I thought for a moment that it was just Autism Speaks that conveyed the negative messages about what it means to be Autistic or the family member of an Autistic person, I might be inclined to entertain that. I might be tempted to consider, for just a moment, that my son might be better off if I gave no attention to Autism Speaks and instead steered him carefully away to avoid the damage.

The thing is, however, that the reach of Autism Speaks, and organizations like them (for instance Down Under’s equivalent, ‘Autism Awareness Australia‘) have had an impact well beyond the edges of their supporters and their supporters’ friends. The sad reality is that I am raising my son in a society that too frequently views disability through the lens of tragedy, burden, and hardship, and too often frames his way of processing and interacting with the world as something that is beyond acceptance until it is cured, fixed (‘fixed‘ meaning that he can appear to emulate those who are non Autistic) or otherwise eradicated.

These stigmatizing attitudes about disability that are steeped in the language of pathology and cost and deficit are pervasive and we, as a society, have become so accustomed to this stance that many of us cannot even see how problematic it is. The prevalence of stigma is so vast and dominates the discourse to such a degree that it may not even be seen, or questioned.

Sadly… we may be so used to it that we do not notice it until we see its impact on ourselves or the people we love.

Part of raising this young man to be a healthy Autistic adult is giving him the tools and the perspectives to understand about his civil and human rights. I want him to know he can rail against stigma, and I hope that I am modelling that we can work from within communities of support to change things for the better by speaking out and taking action.

You see – this is a kid who has grown up in the era of Autism Speaks. It breaks my heart to say so, but Autism Speaks is the most recognized (albeit – wrongly so) organization to spread [mis]information about Autism.

My son, along with other Autistic people, is excluded by this giant machine of a corporation.

But what he has not been excluded from is the stigma spread by Autism Speaks. He has been surrounded by it since 2005… which is by far the majority of his life.

And the really, really sad thing is… that I know my son already has internalized the negative and stigmatizing ableist messages, language and attitudes that seem to be everywhere. It is insidious and I know this has affected him.

So there is work to be done… and I am hoping – no, counting on it – that this is enough to mitigate hate.

Sometimes it is complex and involves networking with others to counter Autism Speaks and show that there are alternatives.

Sometimes it involves signal boosting the voices of Autistic people, because theirs are the voices we should be listening to – first and foremost.

Sometimes it is carefully choosing my words when my son asks a question – or perhaps monitoring my responses so that I am fully supporting him as our relationship changes.

Sometimes it is understanding that fully supporting him means stepping back and getting out of the way.

And sometimes it is as simple as drawing images with chalk alongside H in our driveway, because this is something that sends a message as well…

Image: chalk drawing portrait of a young man (H) Text Reads: “Boycott Autism Speaks – NOT A TRAGEDY” Watermarked: Thirty Days of Autism: Leah Kelley

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30 Days of Autism is a project designed to fight stigma, promote civil rights, and increase understanding and acceptance for those who process and experience the world differently.

©Leah Kelley, Thirty Days of Autism (2014)   

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