Image is a photo of Brooke on the Boycott Autism Speaks Facebook page holding a sign that she and I made together. I wrote the text in purple at Brooke’s request, and Brooke wrote “Thank You” and “Boycott Autism Speaks” by herself in pink. She is wearing the t-shirt that she happened to be wearing on the day that we took the photo. It reads, “I love being me.”
Text of the sign reads, “We try to explain to Autism Speaks why their words hurt us. They won’t listen. If you want to support autistic people like me, please help places like ASAN, the Arc and local autism service organizations and NOT the ones who claim to speak for us without listening. Thank you.
I’ve started this post three times so far. I’ve deleted every word of every false start.
I’m probably too angry to write. I should, as I so often preach, sit on it for a while. Cool off, as it were.
Screw it. I’m tired of being diplomatic. It hasn’t worked anyway.
My friend (in the Facebook sense of the word, if we’re being honest, but I’ll happily exaggerate it a little if you’ll let me), Steve Silberman, recently wrote a book that has gotten a LOT of really positive buzz in the Autistic community and well beyond. NeuroTribes has been called the best book you can read to understand autism along with a whole lot of other things to which I don’t have the wherewithal to link right now, but trust me, they’re pretty much all along the lines of “paradigm shifting,” and, “Holy crap, this is really good.”
On the heels of the book’s release, Steve has been even more visible than usual both on social media and in the press. Since I really like him (I once declared him the best Facebooker in the history of the world and I stand by that), this makes me happy. Anyway, a couple of days ago, Steve wrote an op-ed for the LA Times in which he discussed some of many ways in which Autism Speaks fails the Autistic community.
While Steve’s book is said to be groundbreaking, I think he’d agree that there was really nothing in the Times article that is new. Every issue he raised has long been lamented by Autistic people and those of us who love them. Of all the points in the article, the one that was the most salient was the fact, long acknowledged, that Autism Speaks does not make any effort to hear or include the people they purport to represent. In fact, as I’ve talked about ad nauseum here, they often make every effort to silence them when their perspective doesn’t serve their agenda. (The irony in that, of course, is that the latter should be always based on the former and nothing else.) But it’s not. And never has been.
Imagine a world in which the leadership of the NAACP was all-white; now consider that not a single autistic person serves on the board of Autism Speaks. This absence makes itself felt.
He ended the article with a quote from Julia Bascom, who, he says, “writes that people on the spectrum are no longer willing to be “spectators in their own stories.”
Well, Autism Speaks decided to respond. Liz Feld, or whomever actually writes these things (if I were guessing, my money would be on Michael Rosen), wrote a post called, “A Call for Unity,” in which she said, “Unity in our cause will only make us stronger.”
She ticked off a bunch of things that Autism Speaks does. We’ve all seen the financials. We know what they do. And what they don’t. And then, as if to make the point about how incredibly tone-deaf they remain, she quoted one person in the post. Just one. The father of an autistic child. And here is what he said:
Without unity there is no voice. That does not mean that we cannot have a diversity of ideas and voices within the community, all of which are valid and need equal respect. Those who are least severely affected may just need an openness and understanding of the character traits that make them unique. Those who are more impacted by autism, like my son, may need therapies and hopefully a medical breakthrough that will come through scientific funding. And those who dream of being parents one day deserve to know their children will have the best opportunity to thrive in society without the challenges that are created by autism spectrum disorder.
I took to Facebook this afternoon after reading that the first time and wrote, “One cannot, in good conscience, tell folks to pipe down in the name of unity while refusing to acknowledge that the people who are speaking up in opposition to what you’re doing are the very people whom you purport to represent.”
My friend, M, responded with a link to a post he’d written last November. Thankfully, it’s a lot easier to read than that terribly constructed sentence above and, even more thankfully, he was kind enough to allow me to reprint it all here.
I hear a lot of concerns and frustration about divisions, especially during a tough week like this. The news is once again filled with tragedy, which has sparked more arguments about autism…about how we should think about it, discuss it.
Some have expressed concerns over these divisions and feel that we should find ways to minimize them.
I have to be honest…I think the reverse is true.
Division is good. Division means something is at stake. Division means we are grappling with complicated issues that can’t be resolved with a singular, monolithic point of view.
Division is not just inevitable, something we have to reluctantly live with. It’s necessary.
Here’s why: lack of division…a state where everyone is basically on the same page…we’ve actually tried this before. Until recently, there really were no arguments or disagreements about autism…it was viewed as bad, as something shameful. Autistics were largely institutionalized or kept out of public view. There was complete agreement on the fact that autism needed to be hidden away or eradicated.
That’s what unity looked like.
Today, thanks in large part to the internet and social media, autistics are contributing their own perspectives. Turns out: we have a slightly different view of things. We don’t want to be hidden away or eradicated. We want respect.
We want a seat at the table.
We want our voices to be incorporated into discussions about the spectrum. Things only possible if autistics are allowed to push back and contribute their own stories and interpretations.
Negative views about autism are the norm…and for too long, they were the only view. Division means that new voices are being heard. This is good.
This is why I like division. I like what it represents. In the context of discussions about autism, division means the old view has some competition. And yes, that’s going to make some people uncomfortable, but that’s okay. You don’t need to be comfortable.
You just need to make space at the table.
For years, Autistic advocates have made the not just perfectly reasonable but ethically imperative demand that they be part of the conversation about themselves. That there be, as the Autistic Self Advocacy Network so eloquently puts it, “Nothing about us without us.” And yet, when they attempt to talk to the largest autism advocacy organization in the world about the damage they are doing to those they theoretically represent, they are, time after time, silenced.
On Wednesday, the day of Autism Speaks’ big anniversary, the Daily Beast published an article entitled, “They Don’t Want an Autism Cure. ” (They “they” in that sentence being the vast majority of autistic people.) The following is from that article.
“The autism community is represented by a beautifully diverse group of people who face a variety of challenges and possess many talents,” said C.J. Volpe, chief of media strategy for Autism Speaks, via email. “Some people on the spectrum need minimal support and can advocate for themselves, while many others live with serious co-morbid medical conditions, are in pain and seeking a voice to advocate for them. A vital part of our mission is to cure those who are in pain and suffering, and offer a voice to the voiceless.”
Volpe emphasized that Autism Speaks’ search for the underlying cause of autism—perhaps paving the way to autism’s cure—is intended to alleviate suffering. “Autism is a whole-body disorder and its symptoms can go beyond sensory and communication difficulties,” he said. “There are many people with autism who have seizures, are self-injurious, and suffer from crippling gastrointestinal disorders. By understanding autism’s causes, and how its symptoms interact, treatments can be developed to alleviate them.”
There are so very many things wrong with this, but let’s break down a couple of the most harmful, shall we?
In response to strong Autistic advocates, many of whom, like my friends, Amy Sequenzia and Barb Rentenbach, are nonspeaking and quite severely disabled, Autism Speaks attempts to divide the spectrum thusly:
Those who “need minimal support and can advocate for themselves”
Those who “live with serious co-morbid medical conditions, are in pain and seeking a voice to advocate for them.”
If we buy into this false and damaging bifurcation of the spectrum, this “high” vs “low functioning” paradigm, then we can, according to Autism Speaks logic, rationalize dismissing the voices of those who have found a (typically hard-won) way to communicate as non-representative of those who have yet to do so. Let’s start there.
All these people for whom they claim to be fighting? As soon as they are able to communicate for themselves, if what they say is that they don’t want a “cure” for their neurology but rather support and help in mitigating their challenges, they are no longer representing the people who haven’t yet achieved the same. I beg you to read that again, slowly, carefully, until it really makes sense because it is, in its fullest implications, truly horrifying. Success is not only not celebrated, but renders the voice of the person who has succeeded in finding a method of communication no longer autistic enough to be represented by nor relevant to Autism Speaks. Please, please think about what that actually means. If once you can type your thoughts, they contradict my ideas about those like you, then you are no longer disabled enough to count.
The thing is, even if this division of human beings weren’t already something against which we should fight fundamentally, it’s also something that AS only uses when it’s convenient. You see, all of those numbers that they trot out – the statistics that they offer as proof that autism is an out of control epidemic – those numbers are INCLUSIVE of everyone on the spectrum – verbal, nonverbal, and everything in between. It’s long past time to start telling them that can’t have it both ways. Either they’re fighting for the rights of every last one of the 1 in 68 they love to reference in speeches and ads and pleas for money – or they’re not. If, as Volpe makes abundantly clear, they’re really not, then it’s time to start using very different numbers.
But the tactic has a far more nefarious purpose – it allows AS to control a conversation that should not ever have been in their control. It allows them to silence the voices who SHOULD be leading the discussion simply by refusing to acknowledge them. (Click HERE to see how that played out for Amy Sequenzia onMTV news last week.)
As for the next part of the quote, I’ve never met an autistic person who claimed that co-morbid conditions shouldn’t be a research priority. Not one.
“Autism is a whole-body disorder and its symptoms can go beyond sensory and communication difficulties,” [Volpe] said. “There are many people with autism who have seizures, are self-injurious, and suffer from crippling gastrointestinal disorders. By understanding autism’s causes, and how its symptoms interact, treatments can be developed to alleviate them.”
None of what Volpe says here is untrue. What’s problematic is that it’s his rationale for why AS is seeking a cure for autism. Conditions that are co-morbid to autism aren’t autism. Want to find a cure for epilepsy? For the love of all things holy, please do. I’m sure my daughter would love to be able to take a bath or a shower without an audience. But you don’t have to make her neurotypical to do it.
Some time ago, I wrote a post called Lost in Conflation – Not Autism. I think it serves well to explain why this argument doesn’t work.
Someone very close to me is fighting ovarian cancer. It’s awful. No one should ever have to live through the hell that she has lived through this last year. We’ve thrown our hands up to the sky and yelled ourselves hoarse in anger. She shouldn’t have to suffer. She shouldn’t have to fight for her life.
If she were male, she wouldn’t have ovarian cancer. Cause, ya know, she wouldn’t have ovaries. As angry as I’ve ever gotten, I haven’t ever once said or thought, “F@%k femaleness.”
I mean, that sounds really odd, right?
“Screw your gender because you have cancer.”
As a woman, I am far more likely than my husband to get a urinary tract infection or osteoarthritis, or to fight anxiety and depression.
I’ve had urinary tract infections, and man, they suck. And I do, in fact, suffer from anxiety. I carry it like a toxic fume, trying desperately to keep it contained until the days when it escapes, and when it’s at its worst and I’m fighting with everything that I have not to choke in the cloud. I get angry in those moments. At anxiety, at myself, at my impotence in the face of something that I cannot control.
But I never think, “I hate my femaleness.”
I just … don’t.
Even though it is indeed my gender that has made me far more vulnerable to anxiety than I might have been.
When my daughter’s anxiety has flared — yes, the very same anxiety that I just told you that I live with too, I have turned my anger on her neurology.
When we realized that she was experiencing seizure activity, I cursed her neurology.
When she struggled to grasp the most basic building blocks of math and reading, I blamed her neurology.
When she’s been moody and obstinate and frustrated and, well, perfectly, appropriately defiantly tweeny, I am embarrassed to say, I have chalked it up to her neurology.
Anxiety … is not autism.
Epilepsy … is not autism.
Learning differences … are not autism.
The moods to which we are all subject and all entitled … are not autism.
Are there challenges inherent in autism? Hell, yes. But these are not they.
Autism is her neurology. It is NOT any of these other issues which, if we’re being truly honest, are the primary culprits in creating challenges in her life. Do they often ride shotgun with autism? Yup. The numbers don’t lie. But just as we’d never think to damn our gender for the issues to which it makes us susceptible, it’s never okay to blame autism for all the other “stuff” which it, most decidedly, is not.