this is getting old

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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.
#BoycottAutismSpeaks”

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.

Steve writes,

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.

We (as non Autistic people) don’t get to set the agenda and then tell the folks who are affected by it the most to sit down and shut up because they’re not playing nicely with US.
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For God’s sake, think about that. It’s just beyond $%!@ed up. Seriously. Can you imagine any other advocacy effort in the world in which those for whom the advocacy is designed are denied a voice in said advocacy? And again, AGAIN, it’s justified by this complete and utter bull$!&% that the level of impact of autism is a determining factor in who supports AS and who doesn’t.
In March, I wrote the following on that topic …
.

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”

and

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.”

No.

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.

But ….

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.

And here I am saying it again.
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Stop.
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Stop dividing this community and then crying for unity. Stop trampling the people you claim to be fighting for. Stop responding to pleas to listen to Autistic people by quoting their parents. Stop trotting out the tired and dangerous idea that”curing” autism is the only way to help mitigate the effects of co-occuring conditions that ARE NOT autism. Stop dehumanizing and degrading human beings.
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Just stop.
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It’s getting really, really old.

 

 

 

 

 

26 thoughts on “this is getting old

  1. “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.”
    And this right here is what broke my heart. They are hoping for a world where these fictional parents they imagine will not be “burdened” with parenting these (awesome) children. I am physically sick.

  2. thank you for your words. for the thoughtful and precise words you find that i can not. your blog and page makes my world a better place because it gives me hope. not just for my life but for many daughter.

  3. “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.”

    Of course, what they refuse to acknowledge is that many of those challenges are actually created by the societal attitudes they are promoting and propagating.

    Also, in my view, “co-morbid” is an awful word, implying that being autistic is morbid.

  4. Until Autism Speaks leans to include people with autism in the discussion then there will be NO unity….Then again with all the damage they have done…Not sure I would unite with them no matter what they did…

    My son is about to turn 18, he is considered to be moderate to severely autistic. He is able to express basic needs but is unable to have a conversation. He also lives with Epilepsy, ADHD, and Asthma, these don’t have anything to do with his autism. In fact both the Asthma and the ADHD precede his diagnosis.

    I have been a reader here for years, I would guess since close to the beginning. I have watch Brooke grow up in pictures and have cheered every step forward and cried with you during the tough times. She is very different from Jim and their abilities and futures are very different. The idea that either one of them would ever be lead to believe that they should be fixed, or do not matter because they don’t fall into the narrow view at which AS has of autism is disgusting.

    We will continue to rally again Autism Speaks and their message because we have no choice. To give up this fight is to give up on the rights of our children to live their lives on their terms.

    We stand with you, surrounding you, giving you are love and support you are not alone in this. We will not be defeated, we can’t be, there is no other option.

  5. Pingback: Boycott Autism Speaks | Wisdom Tara ཤེས་རབ་སྒྲོལ་མ།

  6. Hi Jess,

    I follow you on Facebook and love your posts. I wasn’t sure how to contact you do I decided possibly comments might work. I work in southwest Florida as a principal of a private non profit school that provides individualized services and education for students with autism and related abilities. Each year in SW Florida, they have a giving challenge for non profits. This year our school is trying to raise 55k to cover the costs of OT, speech, music. And horseback riding therapy for our 57 students rather than adding it into tuition. I was hoping you could help by simply spreading the word of our fundraiser. It is called the giving challenge. Our school is beyond the Spectrum. Please let me know if you are willing to help, and I can provide you with more details for your readers. The dates are Sept 1 and 2 from noon to noon.

    Thank you for taking the time to read this!
    Amy

    • Amy, This got caught up in moderation while we were away and I’m just seeing it. So sorry! If there’s still a way to donate, please put together a tweet and tag @diaryofamom and i will happily share it. Hope it went well!

  7. Well said! I have come to detest the month of April in its guise of “Autism Awareness” month. Haven’t we come farther than that? I’m very much aware of autism, thank you very much, having a cousin and a son on the spectrum and maybe being undiagnosed myself. Acceptance, knowledge, comprehension – no more crappy acceptance, please.
    It takes courage to speak up against the big organizations. Thank you for having and expressing that courage.

  8. I think that you have written a perfectly reasonable response and I don’t see that you need any cooling off whatsoever. You are far more articulate than I on the issue. Autism Speaks can kiss my ass. I am not interested in a world without diversity and I will never share their f-d up facist “dream”.

  9. “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.”

    Really???

    I’ve bee reading Steve Silberman’s new book NeuroTribes. His book is heartbreaking and hopeful. Heartbreaking because he so powerfully shares the way that children and adults with Autism and were treated in the early part of this century (and still now there are so many issues). Stories of parents placing children in sanitariums at their doctors urging, or because they did not want to be burdened. Steve shares what happened to untold numbers of these children and adults at the hands of Hitler and his regime because he he wanted a pure DNA. It was so painful to read what happened. I’d had not idea until I read his book.

    I was diagnosed late last year at the age of 53. Finally knowing who I am is a gift beyond measure. The most difficult part of living for the first 53 years of my life until I was diagnosed? Trying so hard to fit into a world in which I felt like I had no place. Where I was expected to be someone that I was not. I used to say that my real family must have left me on this planet by mistake. After I was diagnosed I started reading stories from other Aspies and realized it’s a common feeling. We are not a disorder. Period. We are not a burden. Period. We have voices, however those voices express themselves, that need to be heard. I also have epilepsy, anxiety, and auto immune related conditions, and I have Autism. I’m not broken or a burden and I have a voice. We have a voice and we will be heard.

  10. My mother was autistic and had many co-morbid medical conditions that had absolutely diddly-squat to do with her autism.

    Polio survivor with post-polio syndrome: no relevance to autism
    Heart problems from rheumatic fever before penicillin: no relevance to autism
    Congestive heart failure: no relevance to autism
    Emphysema: no relevance to autism
    GI issues: probably no relevance to autism
    Kidney problems: no relevance to autism
    Osteoarthritis: no relevance to autism
    Hip dysplasia: no relevance to autism
    Migraines: no relevance to autism
    Allerges: no relevance to autism

    Seriously, autism was the least of my mother’s problems. If she’d had a pain-free body and no mobility issues, she would’ve been reasonably content. If she had all the physical ailments and no autism, she would’ve been only slightly less unhappy about her existence.

    I’d love to stop having migraines, peri-menopause, allergies, and asthma. But they have nothing to do with autism.

  11. When asked my opinion on the Autism Speaks controversy, I usually give a quick/kind response like “not political but very active B” because typing takes me so long and sustained negative emotions make me physically ill. My plan has always been to help unify in another ways. In 2012, I wrote my intentions to my publicist: “I plan on writing many books in myriad genres each creatively unique in process and form. ‘Autism Advocate’ will not be my only title, eventually my musings will inspire mainstreamers and that will serve my ASD clan best. My work and person will change ASD inside and outside.”

    My sense is it is true that “we are no longer willing to be spectators in our own stories.” Our process is our story. You see we are all teachers of our own story. For best results: Teach from the heart to the heart like Jess Wilson. To unify our love, we all must actively seek to know other stories. I just ordered Steve Silberman’s Neuro Tribe. I hope he will do the same with my new book which comes out this fall, Neurodiversity: A Humorous and Practical guide to living with ADHD, Anxiety, Autism, Dyslexia, Homosexuality, and Everyone Else by Barb Rentenbach and Lois Prislovsky, Ph.D. Ill leave this discussion with one of my most popular quotes from my story “Autism is my Prism, not my Prison”. Thank you all for teaching your stories and doing your fair share to make the appreciation of neurodiversity more common than juice stains in mini-vans. Love with you impacted by autism B

  12. Great Piece! Thank you for getting it out here, because it’s going to be “new” for some and it’s so important. I see Autism Speaks as a machine designed to appropriate and then erase difference. And it asks members of the community to be quiet, to go along with and to participate in their oppression. All with a big blue bow.

  13. Got a fundraising form letter by email from an extended family member. Not sure what to do. I’ve been told that I don’t really have much to offer because “my child is not like their child”, which is true. But that doesn’t change the reality of AS and their huge amount of non-helping.

    Do I ignore? Do I reply to her with this link, or one of the others? Do I “REPLY ALL” with your best “why AS isn’t the way” posts? I just don’t know what’s appropriate here, but ignoring it doesn’t help.

    What can I do to make the best/greatest impact?

    • All depends on what you think they’re most likely to hear. Perhaps Amy Sequenzia’s posts might be best given that she will ‘look’ to them most like their child?

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  16. It has been a year to this day that this post of yours was published, so I’m just going to say: thank you, Jess. Thank you for being one of the few parents whom understand the fact that Autism Speaks is not the benign organization that it claims to be. Thank you for being a parent that embraces her daughter and her autistic essence.

    I will admit, I had not learned of the concept of neurodiversity or of the neurodiversity paradigm until earlier this year, about March or so. However, what I can certainly say, is that by embracing the neurodiversity paradigm, I now have learned to love myself in a manner that I hadn’t been able to do so before, and I no longer feel that my nonspeaking cousins have no potential in their futures– in retrospect, I resent dutifully my treatment of one of them as a child, because, frankly, I realized that I had treated them no different than how my neurotypical peers viewed me. I truly feel that the “awareness” campaigns of Autism Speaks and of akin organizations are what cause for many my age to fear autism and to autistic people, to thoughtlessly hurl the word “autistic” as an insult, and to use “autism” as the “comic device” that it most-certainly isn’t. I feel that many of my peers perceive us as “missing,” when in actuality, we are everywhere. We have always existed, and are not going away anytime soon.

    This quote from your friend especially is critical: “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.” For the past week or so, I have been having a series of nightmares involving the innovation of an autism “cure,” terrifying nightmares. Nightmares where, while my cousin could speak and while the two of us had it easier with interacting with others, we held one another in our arms and wept, because we couldn’t feel anything. The outsiders, the neurotypicals, they cheered us on for having been “cured” of autism… Yet we, my cousin and I, we felt numb. We wanted our authentic souls back. This autism “cure” had essentially taken our souls away… Quite contrary to the prevailing belief that autism itself is a thief of souls.

    I commend those who point out the moral and ethical consequences of “curing” autism, because if Autism Speaks, the Simons Foundation, and other organizations that have perpetuated the myth of autism being a “public health crisis” get their way, we are talking about the radical altering of human beings, as well as the eradication of future generations of human beings not dissimilar to them. I do not wish for parents to ever fear having a child not unlike myself, or my cousins, or Brooke, or any other autistic individual, no matter their individual levels of care, because these organizations have perpetuated a farce, a lie, that only an overly-sanitized humanity is ideal, and even the slightest deviation from what is deemed “normal” is a terrible tragedy. It’s quite saddening to peak on the Autism Speaks Facebook page once in a while and see just how distraught these parents are, and how they plead at their knees for an organization that doesn’t truly care to offer aid.

    There is no way in which I would brand myself an advocate or an activist whatsoever. Like Brooke, I’m a mere autistic young woman drifting on the gentle waves of life and seeing where they take me. I just wanted to comment on this post, because it’s absolutely amazing (as are many things that you post), and because I can’t wait to see where these waves on life’s ocean take Brooke.

    I apologize for the essay, here. I just… I needed to get it out there.

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