Why I Don’t Light It Up Blue| World Autism Awareness Day

Today is World Autism Awareness Day.

And for most of North America, that means you’ll find blue everywhere. Blue lightbulbs, blue t-shirts, and a whole bunch of charitable initiatives supporting one organization: Autism Speaks.
Autism Speaks is the biggest, most recognizable autism related non profit organization in the world. And today, I want to add my voice to the many who have spoken up before.

I could fill this blog post with innumerable references to the way that Autism Speaks talks about autism in their marketing – about how they  have created a campaign of fear surrounding something that isn’t to be feared, about how they use language that borders on hate to describe autism, and by extension to describe children with autism. About how they believe that autism needs a cure, that the children living with autism (because Autism Speaks notably ignores the fact that children with autism grow into adults with autism) need to be fixed, and that biomedical science is the best way to do that, even when we know that educational interventions are by far the most effective way of mitigating symptoms. About how they have only had one individual with autism on their board. John Elder Robison, and he quit.

I could tell you that, perhaps most strikingly, the very people Autism Speaks claims to support – families and children with autism – repeatedly state, over and over again, that Autism Speaks does not speak for them.

Instead, what I’ll tell you is this:

If anyone ever asks you to donate to Autism Speaks to support families with autism, know that your money won’t be going to families.

As stated in their year end statements for 2013, Autism Speaks spent some of their money like this:

Science grants & awards: $15,300,709

Family service grants & awards: $4,631,690

They also spent over $18 million on salaries, and $52 million on advertising, all parts of a total of $120,547,857 of expenses.

Don’t bother doing the math, I did it for you. Autism Speaks donated 3.8% to families in need of services and supports, using their grant programs.

The saddest part of all of this is the level of recognition, media power and money that this organization has, and how they misuse it. And how many people don’t know that. The general public has been tricked by an elaborate marketing campaign that was used to convince them that autistic children are diseased, broken, and a burden on their families. Who wouldn’t want to help save a family from that incredible devastation? They’ve been given comparisons that don’t translate – comparing autistic children to missing or murdered children, and autism, a neurodevelopmental disability to diseases like diabetes, cancer and pediatric AIDS. It’s a widely successful campaign of misinformation. And it has to stop.

Where to Give Instead

Autism specific:
Autistic Self Advocacy Network
Autism National Committee
Autism Women’s Network
Dan Marino Foundation

General disability:
4 Paws for Ability
TASH
Easter Seals

Most areas have their own local autism societies as well. If you need help finding one, feel free to leave a comment and I will do my best to connect you on a local level!
 

Stephanie Ostermann

I’m the sort of girl who you meet for coffee and end up pouring your entire heart out to. The friend you come to when you need someone to call it straight. No bullshit. No extras. Just truth.

I’m a communicator. That’s a PC way of saying I like to talk, but I also spend a lot of my time listening, and over the years, I’ve developed a sense for subtext – how one or two words can change your entire message, what people are really trying to say and how to weave the varied layers of your story into one cohesive brand message that your clients fall in love with.

When I'm not acting as editor in chief for Vivid & Brave, you can find me geeking out over words here.

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