And you didn’t even notice/When the sky turned blue/And you couldn’t tell the difference/Between me and you

Last night after the sun went down, multiple buildings at the University of Rochester, down the street from my house, were bathed in blue light. Buildings across the country, across the globe, followed suit. Strategically placed bulbs behind Niagara Falls illuminated the cascading water. Everything lit up, blue.

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April is widely acknowledged as Autism Awareness Month. The UN designated April 2nd as World Autism Awareness Day back in 2008, and Autism Speaks began their Light It Up Blue campaign in 2010, urging people to dress in blue and put blue bulbs in their front porch lights, in an effort to spread awareness of how widespread autism is. For most people in the autism community in the US, World Autism Awareness Day and Light It Up Blue are inextricably linked, and both are clearly associated with Autism Speaks.

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A year before the Light It Up Blue Campaign was inaugurated, Autism Speaks hired Alfonso Cuaron to direct a four minute long video called “I Am Autism”. Given that Cuaron was in the midst of an ugly divorce following his son’s diagnosis with autism, procuring his services to make a film about the effects autism can have on a family had somewhat predictable but no less distressing results.

Over ominous music and grainy home videos of children stimming or staring blankly into space, a chilling voice intones, “I am autism. I’m visible in your children, but if I can help it, I am invisible to you until it’s too late. I know where you live. And guess what? I live there too… I know no color barrier, no religion, no morality… I have no interest in right or wrong. I derive great pleasure out of your loneliness. I will fight to take away your hope. I will plot to rob you of your children and your dreams. I will make sure that every day you wake up you will cry…I am still winning, and you are scared. And you should be.”

And then the music modulates ever so slightly, to a major key, to a triumphant rebuttal. “And to autism I say: I am a father, a mother, a grandparent, a brother, a sister. We will spend every waking hour trying to weaken you…We search with technology and voodoo and prayer and herbs and genetic studies and a growing awareness you never anticipated…We speak the only language that matters: love for our children…You are alone. We are a community of warriors. We have a voice. You think because some of our children cannot speak, we cannot hear them?…When you came for my child, you forgot: you came for me.”

The message of the video could not be clearer: autism is an insidious force that steals your children, and Autism Speaks is an organization that represents the parents fighting back. It’s a game of telephone — parents presume to speak on behalf of their children, and Autism Speaks presumes to speak for the parents. But given how much inevitably gets lost in translation in any given game of telephone…

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…let’s be honest — Autism Speaks is really just speaking for parents. Their public relations campaigns promote the challenges faced by “warrior moms”. Light It Up Blue spreads awareness, yes. It spreads awareness of how much “autism parents” have to struggle. I have two autistic kids, so basically Autism Speaks is speaking for me. Um…thanks? I guess?

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Autism Speaks was founded in 2005 by Bob and Suzanne Wright. Bob Wright was the chairman and CEO of NBC Universal when his grandson, Christian, was diagnosed with autism. With an essentially infinite rolodex of connections and gobs and gobs of cash, Wright must have found it unfathomable that this might be an unfixable situation. And because of those connections and that cash, Autism Speaks swiftly became the 800 pound gorilla of autism charities. (I mean, people in Buffalo bought a lot of Flutie Flakes, but let’s be honest, Doug Flutie was never going to be able to make the sort of dent that the head of one of the world’s largest entertainment monoliths could. He sure did make a great pass that one time, though, as I understand it.)

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Autism Speaks was steering the ship, and the course was clear: wide-release, big name PR would bring in the donations, and the donations would fund research into the cause of and potential treatments for autism.

The Wrights’ daughter, Katie, was convinced of the then-still-vaguely-plausible theory that her son’s autism was caused by vaccinations, so a lot of money went in that direction at first. When no studies could find a connection, Autism Speaks officially repudiated any link to a possible danger from vaccines. In doing so, they caused a rift between Katie and her parents that has yet to heal. Katie now often writes for Age of Autism, the pre-eminent anti-vaccine blog, and is a vocal critic of the research Autism Speaks has chosen to fund.

Katie Wright and her pals in the anti-vaccine movement are far from the only critics of Autism Speaks, however. Because the louder Autism Speaks’ voice became, the more blue puzzle piece bumper stickers dotted the interstates, the more dollars got tacked on to the tail end of Toys R Us purchases…the more glaring a particular aspect of the organization became to those who were paying attention. Namely, there were no actual autistic people involved in any sort of leadership position at Autism Speaks.

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Autism Speaks was eager to trumpet each new autism prevalence statistic that any study bore out, for the sake of their bottom line — one in 100, one in 66, possibly even 1 in 50 children in America would be diagnosed with an autism spectrum disorder. (Side note: As cited in an utterly execrable Washington Post op-ed yesterday by noted anti-vax “warrior mom” Kim Stagliano, MIT scientist and noted moron Stephanie Seneff believes that soon half of all children will be autistic if current trends continue — but she is indeed a noted moron whose limited grasp of statistical analysis and odd predilection for talking about subjects far outside her own field of expertise [which is robotics, not autism, for the record] makes me strongly doubt the wisdom of the university tenure system — and I’m the wife of a college professor!) But what Autism Speaks chronically neglected to disclose when doom-and-glooming about rising rates was that a great deal of that increase was clearly due to a broadening of the diagnostic criteria and a subsequent boom in the number of autistic people with the capacity, in whatever form, to speak for themselves. And when they began to speak, their voice was almost unanimousAutism Speaks does not speak for them.

This was problematic for Autism Speaks. So much of their program is built around PR that a bunch of adult autistics undermining their message could be truly damaging to their business model. When President Obama named Ari Ne’eman, the head of the Autistic Self- Advocacy Network, to an advisory position in his administration, what had previously been a relatively quiet rumble mainly confined to particularly dusty and nerdy corners of the internet became a clear public dissent. And what resulted was truly unseemly. Autism Speaks was happy to use stats that included so-called “high functioning” autistics to fuel their fundraising efforts, but as soon as those people began to talk back, they were told they were too high-functioning to really count.

But that’s because Autism Speaks really has only ever spoken for parents to begin with. The only autism that is REAL autism, remember, is the kind that needs to be fought ceaselessly with “technology and voodoo and prayer and herbs and genetic studies and growing awareness.” I don’t know how voodoo and prayer fit into their accounting scheme, but I assume some of the technology in question might be the electroshock behavior modification practiced at the Judge Rotenberg Center, an organization that Autism Speaks featured at a resource fair during their national policy and action summit in 2013. By herbs they’re almost certainly talking about the types of biomedical treatments Katie Wright swears by — they may have disavowed any anti-vaccine stance, but they still fund plenty of studies of complementary and alternative medicine, much of which is harmless or even legitimately beneficial but when taken to extremes can basically bankrupt desperate parents pumping their children full of B12 injections and high-dose anti-parasite medications and synthetic castrating hormones and even bleach enemas. Because autism is winning, and parents should be scared. What horrifies many adult autistics most is the newer focus on genetic studies. Personally, as a person with multiple autistic kids I find genetic studies to be of interest on a “The More You Know!” level, but to people who view autism as an integral, inseparable aspect of their humanity, this all sounds like fancy code for eugenics. If there was a genetic test for autism, the way there is for Down syndrome, would most expectant parents abort?

That’s where the last part of Autism Speak’ battle cry becomes vitally important — growing awareness. That’s what this month is supposedly about, what Light It Up Blue is meant to accomplish: making the public aware of autism. But if Autism Speaks is the one defining what people need to be aware of, is that the sort of awareness we really want to spread? Are we spreading awareness of how hard “autism parents” have it, how much we have to cope with that other parents don’t, how terrible autism has made our lives? That seems to be the message of awareness they presented in “I Am Autism” and the message Suzanne Wright voiced in her “call to action” in the fall of 2013 where she once again described autistic children as “missing” and their families as “not living. They are existing. Breathing — yes. Eating — yes. Sleeping — maybe…Life lived moment-to-moment. In despair.”

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I don’t live in despair.

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No, really, I don’t.

I can’t speak for the parents of children who need more support than my kids, or who have other issues that seem woven inextricably into their autism lattice like seizures or gastrointestinal issues or violence or allergies. But for me, with two kids on the spectrum — my life is tough. But THEIR lives are tougher. This should be awareness of THEM, not of ME. I want to raise awareness about the ways they struggle — but also the ways they succeed and the ways they excel. I want to raise awareness of the fact that their lives have value, whether they have fluent spoken language or not. They shouldn’t have to speak to be heard, and until Autism Speaks does a better job of listening, they should stop hogging the megaphone.

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The hard thing is, Autism Speaks DOES do some work that truly directly benefits families affected by autism and autistic people themselves. Whenever an anti-Autism Speaks thread starts in any of the autism-related internet forums I frequent, inevitably people chime in with, “But my kid got an iPad because of Autism Speaks” or “our local organization got a grant from Autism Speaks that has allowed us to create such-and-such fantastic service for adults on the spectrum.” Awesome! I myself have found some of the text resources on their website to be useful, including one about medications that was developed by a nurse practitioner at our local university hospital. But SUCH a small percentage of their HUGE income goes to those sorts of efforts, and so much goes towards questionable research and unfortunate rhetoric that I simply cannot stand behind the organization and will not Light It Up Blue until they make some large systematic changes in their mission statement.

One of my very favorite bloggers, Jess Wilson of A Diary of a Mom, used to actively fundraise for Autism Speaks, participate publicly in their walks, function as one of the largest parental voices for them in the Boston area. But then something happened, an encounter with Suzanne Wright that made her head spin, and soon she could no longer stand behind the organization.

Someone walks over to our step to say hello. She bends at the waist, looming over Brooke.

Brooke doesn’t look up. She doesn’t stop stripping her stick.

Dig. Pull. Dig. Pull.

Our visitor reaches out a hand and cups it below Brooke’s chin.

I freeze. Oh God.

She uses the hand to pull Brooke’s head up by the jaw.

A thin line of panic starts somewhere deep. I know that Brooke is going to scream. 5,4,3,2 …

She does scream, but not in the way that I expect.

“I HATE BEING TOUCHED!!” she shouts.

I am flabbergasted.

Words. Self-awareness. Communication. Self-advocacy.

I know the sentence will need to be reformatted. But I am drenched in pride.

I turn to Brooke. “Great job telling us how you feel, Brooke. Really great job.” I hope that my words send a message to both of them. I stand with my girl.

Our visitor is undaunted.

“I just want to see that beautiful face,” she says. “Lift up for me.”

I am stymied by etiquette. By deference to our host. By generational difference. By convention.

Brooke is not.

She lifts her head as instructed. And growls.

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A woman with so little respect for the physical autonomy of an autistic child, let alone so little regard for the sensory sensitivities common to autistic people, simply SHOULD NOT be dictating the way we raise awareness about autism in this country. And she clearly doesn’t need to act as anyone’s voice. If we bothered to listen, we would find that autistic people truly can speak for themselves, even if it’s just lifting their head and growling. As a parent, I want to open doors for my children, and I will fight to get them the supports they need to succeed in whatever will make them happy. But I’m not a warrior. My kids are warriors, and they’re not fighting against autism, they’re fighting against a world that is unforgiving of any deviation form the norm. I don’t want the world to be aware my children exist. I want the world to accept my children as they are.

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Awareness can be the first step, certainly, although not the sort of awareness Autism Speaks spreads. But acceptance and understanding is what we need to shoot for. And sadly, that’s not what the world’s largest autism charity is all about.

There were no lights at my house last night. Autism has not robbed me of my children or my dreams. They were in bed beside me, dreaming dreams of their own.