I wrote this a few years ago for the Cal State East Bay Pioneer, but I think it ages well as an attack on Autism Speaks.
It’s Autism Awareness Month, and you may have noticed inexplicable blue lights popping up on the skyline, your Facebook feed, maybe even the porch of a neighbor. These blue lights are part of the autism awareness month campaign. I am so sensitive to them I have lost any perspective on a normal person’s reaction, and realize that for many the lights are invisible.
I was diagnosed with Asperger’s, a disorder on the autism spectrum, as an adult. Those blue lights are supposed to show support for people on the autism spectrum, like me, by supporting an organization called Autism Speaks. It is the largest autism advocacy, research, lobbying and support services organization in the country.
But when I see those blue lights, my heart breaks. When I see those blue lights I see a burning cross. I see the genocide of my people approaching, smiling, wearing my name.
I see these things because Autism Speaks is run by parents and clinicians, and the leaders of those two groups have decided that I am a painful, dangerous, potentially fatal burden to my family and community.
If I could, they reason, I would prefer to be reborn without autism, or even to never have been born at all. That is what you are talking about when you are talking about a cure, the end of autism.
Which sounds great when Autism Speaks labels me a growing epidemic, but autism is not a cold that I could easily be rid of. Autism is not infectious. It is a pervasive developmental disorder, and it has been a par of my brain’s function for as long as I’ve had one.
If you want to remove the autism from my brain you would have to strip my memories and consciousness back to infancy and start over. That is not curing me of a disease: it is destroying me.
Beyond that, the cure I was just talking about is a thought experiment. In a practical sense, the only way we could ‘cure’ autism anytime soon is the same way we’ve come close to ‘curing’ Down’s Syndrome: aborting autistic babies before they are born.
I have no intention of allowing them to genocide my people. I don’t think you want that either.
A vast community of autistic self-advocates are sharing their experiences and reclaiming the right to speak for themselves. If this diverse group has a rallying cry, it is “Nothing About Us Without Us,” to which it was introduced by the wider disability rights community. Their condemnation of Autism Speaks is nearly universal, and their arguments, and stories, are painfully persuasive.
One such advocate is blogger thecaffeinatedautistic, whose post “You aren’t my friend if you Light It Up Blue,” sums up an emerging gestalt in the following quote.
“You are not my friend if you participate KNOWINGLY in an event that was created by an organization who portrays autistic people as burdens, who for a long time were very anti-vaccine in their rhetoric, who have filmed a then-member of their board talking about her thoughts about killing her autistic child and herself (but didn’t because her NT child needed her), and who silences autistic people, removing the very mention of us from our own stories, because clearly, portraying us as capable would ruin the image they are attempting to portray of us.”
The most personally terrifying story is that of Paul Corby, who was denied a heart transplant, at the age of twenty-three, because he is autistic. His might seem like an extreme case, but all autistics live in fear that we will suddenly be identified as leper, as unclean, as the other, and be cast aside because all you crazy, normal people don’t even believe that we are fully human.
Which is why this is such a wonderful problem: once everyone believes autistic people are fully human, that we have all the same rights, responsibilities, desires and idiosyncrasies as any other person, albeit arranged slightly differently, the problem disappears.
Ask yourself, “Is autism scary to me?” If it is, try reading pieces written by autistic people about their experiences. I honestly believe that hearing someone talk about autism from their own perspective is will always make autism seem less frightening.
This is also true for parents. Although I will never understand your family or your child as you do, when your child grows up there are many ways in which they will be more like me than you, and your best chance of understanding these differences, and your child, is listening to people like me.
This is also Autism Acceptance Month, and that’s what I hope you will celebrate. Celebrate accepting autistic people into your communities, into your lives. 1 in 88 people are autistic, after all. Imagine how many of us you already know.
All that we are asking for is a chance to step out of the closet, and into the light of day. To be able to flap, stim, toe walk and refuse to make eye contact without fear of reprisal just for looking weird.