Autism Speaks does not speak for me…

In just under three more weeks, Facebook will be awash with blue. Blue banners, blue puzzle pieces, blue lights; all with a message imploring people to think about autism. This campaign has been co-opted by Autism Speaks, an organization dedicated to curing autism.

They see autism as a separate entity, something that clings to their children, slowly destroying them. They see it as something evil, something hellbent on destruction. And they make this obvious in their videos.

The first Autism Awareness month was held in April 1970, the year I was born. Back then autism was seen as something severe that primarily affected boys. Which is why I, as a chatty, albeit socially awkward child, was given the diagnosis of being a square peg instead of receiving one of autism.

It wasn’t until the early 90’s that people started paying more attention to children who weren’t severe enough for the autism label yet were still showing enough symptoms to not be considered average. These children fell under the category of Asperger syndrome (or Asperger’s). This disorder had been recognized by Dr. Hans Asperger back in 1944, the year my Dad was born, but didn’t gain much notice until 1981. It subsequently disappeared in 2013, when aspies got moved under the term “high functioning autism”, a term that is hotly disputed in the autism community.

Colin was born in 1997, six years after Asperger’s was recognized in Canada and the States. Autism was first mentioned briefly by his speech therapist when he was three and his Junior Kindergarten teacher when he was four. Both times I adamantly disagreed. I knew almost nothing about autism and none of it was good. As far as I knew, autism was children who banged their heads on the floor, rocked violently, screamed, and bit and clawed at themselves and others.

Colin was seven years old and in a special education class when my sister mentioned she thought he had autism. She was the third person and by then I had decent high speed internet and a need to find an answer. That was when I discovered autism checklists. I found so many of Colin’s unique quirks in those checklists, enough to make me realize those three people were likely right. Plus more than enough information to realize that my limited knowledge of autism was just that, limited to the most severely affected people. It took over a decade for me to realize I’m on the autism spectrum as well and I didn’t get officially diagnosed until last year.

Both Colin and I are highly verbal and have our own gifts. I’m good at writing and singing while Colin is good with electronics. He installed three ceiling lights in our home after watching his grandfather install one. He’s built and rebuilt several computers. He also has repaired speakers and RC cars. Basically we’re the people who Autism Speaks ignores.

Autism Speaks plays on the fears of parents. They act like autism is some outside, malevolent force out to destroy not only children but their parents’ whole lives. Something to be cured at all costs, even with “voodoun, prayer, and herbs”. Or, as Colin put it, “They make it sound like autism is a big bad meanie. It’s not, it’s just a birth defect.”

Many autistic people see autism as a neurological condition, hardwired into our brains before birth. It’s just as much a part of us as the colour of our eyes or the pigment of our skin. It’s entwined in everything we say and do. For every negative that can be said about autism, there’s a positive. Many autistic people have a special interest, in which they can rival PhD’s for knowledge. We can focus intently on minute details, often noticing things that neurotypicals miss. We are very routine oriented, which is good in many work environments. We are often very empathetic, which is a double edged sword because we can be overwhelmed by empathy to the point where we freeze and people then assume we don’t have empathy at all. Autism Speaks ignores all of this.

Autism Speaks in fact, ignores most people with autism, leaving us voiceless in their cause. Instead they focus on the parents of young children. Parents who are scared and vulnerable. This is a business and the parents are their clients. Autism Speaks CEO made $371,000 in 2013 (the most recent number I could find) and they spent over $52 million dollars in advertising. No wonder they speak so negatively about autism, they need scared parents who will do anything to cure their child. Scared parents with open wallets.

This year, instead of lighting it up blue, paint your page red or #toneitdowntaupe. Look towards ASAN the Autistic Self Advocacy Network instead of Autism Speaks. ASAN is run for, and by, autistic people.

Remember, Autism Speaks, but you don’t have to listen.

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3 thoughts on “Autism Speaks does not speak for me…

  1. AS will put you down and keep you down, for without their version of the cause they have no way to make money. It’s always about money. It shouldn’t be, but it is.

  2. I’d rather they keep the term ‘aspie’. It’s a bit different than high functioning autism because there are no speech delays, and Asperger is more difficult to diagnose than high functioning autism, easy to mask.

    Being an aspie is part of who I am because it colors everything I think, say, and do. The things I like and dislike, the challenges in my life, and things that happened. The whole way I live my life today and had as a child and a teen, all my decisions. All the good and the bad.

    Treating autism like it’s something separate from the person is like saying it’s a person with the flu, or maybe a worse disease. The way I see it, Asperger is a part of my personality the way some people are adventurous, sensitive, or nature lovers. You don’t say, “This is a person with sensitivity.” But rather, “This is a sensitive person.”

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