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.

“It’s the sound of the unlocking and the lift away / Your love will be / Safe with me”

He recognizes my footfall. He can be awake in his crib for an hour, resting peacefully through absolute cacophony upstairs, but the moment he hears me walk across the floorboards in the living room above his head, he cries out.

I once remarked that he hugs me like he’s Princess Leia and I’m Han Solo and I’m about to be frozen in carbonite and he doesn’t know if he’ll ever see me alive again. On more than one occasion I have joked, when he grabs me by the legs or snuggles into my lap, that he needs to learn he can’t climb back inside me.

About a month and a half ago, he broke my glasses. He’d gotten into the annoying habit of slapping them off my face as I loaded him into his car seat. He really wanted those glasses off of me. He would then look at me fondly and caress my cheek, as though he hadn’t seen my face, my real face, in ages. I think it was a weaning thing. When he nursed, even when he was a very small baby, he wanted to make constant eye contact. Gazing at me in wonder.

I don’t think anyone in the world has ever loved me as much as he does.

I am constantly afraid that something horrible is going to happen to him. A freak accident, when he’s just out of my sight. Awful scenarios, running through my head, all the time. I read the Phillippa Gregory book “The White Queen” last week, and the closer I got to the ending I knew was inevitable, that the queen’s sons would be taken to the Tower of London and never come back out, the more white-knuckled my grasp of the library binding became. My New Year’s resolution this year (and I never make resolutions, so this was big for me) was to stop reading things on the internet that would upset me. True crime, houses burning down with children inside them, longreads about child pornography sting operations. And yet somehow last night I found myself reading the Ted Bundy wikipedia page, half-convinced that there was a serial killer downstairs silently strangling my children and on his way to kill me too. I don’t know if this is normal. I kinda assume that it is and it isn’t. All I know is that I love my children far more than I love myself and I live in constant terror of something horrible happening to them.

So I just don’t understand.

I understand why people, in the comments of some articles I have been unable to pull myself away from of late, want to offer up some small bit of empathy or sympathy to a mother who feels pushed to the breaking point, who feels alone, without support, without hope. I get why people want desperately to create some sort of context, to help prevent, to try to understand.

But I will never understand.

I will never understand how someone could try to kill their child.

I can empathize with Dorothy Spourdalakis right up until she gave her son sleeping pills and then stabbed him in the heart.

I can empathize with Kelli Stapleton right up until she lights the grills in the back of her van.

And then my empathy is gone. And then my compassion disappears.

My son is not autistic, but my daughter is. The emotional abundance I receive from E is not as readily accessible from D a lot of the time. But I have no doubt she loves me. She is able to show me that, through words and deeds. She always has. I don’t know enough about Alex Spourdalakis or Issy Stapleton to speak to their capacity to express connection with their parents. All I know is what the media narratives tell me. They were large, and violent. They were locked in, in their own worlds, a burden. Nevermind reports, firsthand reports I’ve read, from people who have met these kids, seen them talk, seen them play. I do not doubt that these children were more difficult to deal with, on many levels, than my own. But they are your children. They trust you, completely, inherently, from birth. Your job as a parent, more than anything else, is to love and protect your children. Their lives are not yours to dictate. You have no right to decide when and how they will die. When the language we, as a society, use to describe autistic people is language that is othering, dehumanizing, we set up a stage for this to keep happening. When you see your children as a burden, as a curse, as people trapped inside a shell of an illness, as props in your play…that’s the only way I can understand such acts. And with that I cannot, will not, empathize.

When D was a baby, I was shellshocked. I felt an immediate connection with her when she was first placed on my chest, but in the weeks that followed I felt that connection crumble. She was a voracious nurser, wanted to eat constantly, wouldn’t sleep anywhere that wasn’t a lap or a shoulder or a busom. But she wouldn’t tolerate a wrap or a carrier. When I tried to strap her to me so I could accomplish something, anything, she wrestled against me and screamed. Once we got her on some reflux medicine, things got better. But there was still a constant struggle within her that I could perpetually see — her desire to be close to me, so I could nourish her, but simultaneously shuddering and clawing away from confinement. The fervent and almost obsequious love that my son showers me with…it’s not the same as what D and I have. The summer before he was born was a nonstop struggle to come to some sort of detente with her. We screamed. We cried. We hurt each other. I didn’t know what was wrong between us, but despite our epic rows I clung to her. A few days before E’s birth I crawled into bed next to her and we held each other close. I knew it was the last time it would be just me and her together, alone together, as we had been so often for so long. She is my first child. She frustrates me endlessly. She makes me proud every day. A phrase I have seen very often on autism self-advocacy blogs is “Behavior Is Communication”. When D does things that are violent or aggravating or disruptive, I need to stop myself from simply responding to the behavior and instead try to deduce what has led her to that behavior.

Why was Alex Spourdalakis violent? Was it because his mother was subjecting him to biomedical “cure” treatments recommended by her friends Andrew Wakefield and Polly Tommey? Was his gastrointestinal pain a result of bleach enemas? Chelation? I expect we will find out at the trial. But he was trying to tell his mother something.

I will never understand.

Why was Issy Stapleton violent? Was it her reaction against endless behavioral therapies aimed at stopping problematic behaviors rather than understanding what she was trying to communicate? Was it a reaction against a mother that clearly had some need for drama, a mother who posted videos on YouTube of herself weeping and screaming as her daughter comes at her? Trying to tell her mother something.

I will never understand.

Your child is not a bit player in your own personal psychodrama. Your child is not a puzzle waiting to be solved. Your child is a gift, a miracle in every cell of his or her body, even if that body is in some way different from what you expected, what you always thought you wanted in a child. Your child is new and unfinished and essentially defenseless against you. Yes, even a 14-year-old autistic child who outweighs you. You are the parent. You always have options — not always good options, but options. Options better than killing your child who trusts you, who needs you, who is struggling and needs your love and your guidance, not your disappointment and disdain and despair.

I think it is an insult to my friends who are parents to autistic children who fall on the more “severe” end of the spectrum to express sympathy for these women. Thousands of parents are raising children who are very similar to Issy Stapleton and Alex Spourdalakis and would never dream of murdering their kids. We can and should have a discussion as a society about lack of services, lack of supports — but can we please do it independently of the conversation about murdering children? Kelli Stapleton had total strangers on the internet donate money, enough money to send Issy to a residential therapy program for six months. Dorothy Spourdalakis had people from Age of Autism filming in her kid’s hospital room; Andrew fucking Wakefield at his bedside. These were NOT women who were toiling away anonymously, penniless, without any resources or supports.

As a parent, it has been relatively easy for me to find blogs of other parents where we can offer each other support, to find accounts in the media that promote sympathy and understanding towards parents of children with autism. I agree that in our day to day, non-internet life, it can be hard to find the support we need. But the overall narrative in the media is one that gives parents a voice. Conversely, I have found it is extremely rare to find blogs or articles that are written from the point of view of autistic adults. Really. It wasn’t until I found Shannon Des Roches Rosa’s blog (through a search about iPad apps, of all things) that I was introduced to the voices of autistic adults from all points along the spectrum, from Ari Ne’eman at the “high-functioning” end to Amy Sequenzia at the so-called “low-functioning” end. So many parents of autistic children believe that organizations like the Autistic Self-Advocacy Network are made up solely of Aspies who don’t represent their non-verbal or aggressive child. They are WRONG, and the reason they are wrong is because they simply haven’t seen it, seen what their children are possibly capable of as adults. People like Kelli Stapleton and Dorothy Spourdalakis see their children’s autism as a life sentence, not only for their children but for themselves. Of course that makes them depressed and anxious, and in some cases, in people who already have their own issues to deal with, personality disorders, whatever it may be…they snap. And what ASAN and other adult autistic advocates and even many parents like myself are trying to express is that we cannot offer our sympathies to those people who snap, because their actions do nothing but perpetuate the currently rampant idea that autism is an unbearable curse for parents and children. That devalues and dehumanizes autistic people. The most common response to these tragedies, it seems, is to focus on the experience of the parent, try to find what possibly triggers their murderous behaviors. I think it’s more important to change the focus from the parents to the children, emphasizing how our society’s general perspective on autistic children is a dehumanizing gaze that is so pervasive that it warps how many parents view their own children. As a parent, I struggle, every day. But I have to always keep in mind that my daughter is struggling more than I am, and do everything I can to help her through. And part of that is refusing to support a media narrative that says I deserve a voice but my child doesn’t.

My son just turned two, and he doesn’t talk much. It’s frustrating, and ironic, to have had a daughter who is autistic and couldn’t stop talking for a million dollars, and a son who, from all available evidence, is not autistic but is just a big ol’ mushmouth. But one of the things he can say is, “I love you”. It doesn’t sound like “I love you.” It sounds kinda like, “N’doo.” But he says it to me every morning when I get him out of his crib. I speak his language. I hear his voice.