#autismspeaks10 and #actuallyautistic #autismchampions – part one

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{image is a screen shot of a tweet: @autismspeaks On 2/25 Autism Speaks turns 10-years-old! Tell us how AS has touched your life at AS10Years@gmail.com #AutismSpeaks10}

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{image is a screenshot of a tweet: @stevesilberman Autistic people have taken over the hashtag #AutismSpeaks10 to oppose negative messaging. It’s quite a thing.}

The past couple of weeks have been nothing if not colorful in the world of autism advocacy. It all began when, ahead of its 10th anniversary last Wednesday, Autism Speaks asked its 168,000 Twitter followers and 1.5 million Facebook fans to use the hashtag #AutismSpeaks10 to share “how AS has touched your life.” The response was, I would imagine, not quite what they were hoping it would be.

In an article detailing what happened next, Virginia Hughes, BuzzFeed Science Editor, wrote:

Instead of heartwarming stories of gratitude, the hashtag has sparked hundreds of angry missives from autistic people and their supporters who say Autism Speaks does not speak for them.

“It really came out of the autistic Twittersphere, which saw this as an opportunity to highlight the fact that Autism Speaks’ 10 years of existence have, in fact, made things worse for us, not better,” Ari Ne’eman, president of the Autistic Self Advocacy Network, told BuzzFeed News.

Autistic people took back a conversation about autism. And doing so was considered a radical act. If you’re paying attention, that should at least confuse you if not make you really, really angry.

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 on MTV 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.

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.

So back to the hashtag. When it became clear that #AutismSpeaks10 wasn’t going to serve its purpose, a hashtag from June of 2014, #AutismChampions, made a resurgence. Within short order, autistic people jumped in to say that if you want to be a champion of autistic people, you have to be fighting stigma, fear and prejudice, not creating and perpetuating it.

I even tried my hand at a few. {image descriptions at end of post}

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In the midst of all of this, a fellow writer and mom of an autistic kiddo reached out to ask if I could connect her with some of the autistic folks who’d been involved with the Twitter takeover. It was, as it always should be, important to her to include their voices in an opinion piece that she’d been asked to write about what had happened. She spoke to some of my friends, wrote the piece including their perspective, and then came back to tell me that it had been rejected by the outlet that had tasked her with writing it, even though they’d asked for it. Apparently her opinion piece didn’t reflect the opinion they’d expected.

I promised her that if she could find no other platform for it, as Amy had, I would provide one.

She came back.

Tune in tomorrow to read her post.

In the meantime, thank you. Thank you for understanding why this matters so much. And for helping to lift the hard-won voices of those for whom this fight is about nothing less than a fundamental acknowledgement of human dignity and the universal right to self-determination.

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{image is a photo of Brooke jumping high into the air above Surfside beach on Nantucket. The text reads #ActuallyAutistic #AutismChampion Proud of who I am.}


Tweets in the images as follows:

@diaryofamom MY #AutismChampions wear Mickey ears and change laws #ActuallyAutistic @ConnersLaw

@diaryofamom An #AutismChampion is an #ActuallyAutistic adult like @ChloeRothschild who mentors 1 coming of age in a a world of far thx to #AutismSpeaks10

@diaryofamom #AutismChampion @JimSinclair8 gave me the gift of forcing me to see the world from my daughter’s perspective. #ActuallyAutistic #Grateful

@diaryofamom More of my #AutismChampions: Everyone a @autselfadvocacy who fight day in and day out for my girl to have a voice. All #ActuallyAutistic

14 thoughts on “#autismspeaks10 and #actuallyautistic #autismchampions – part one

  1. This is an excellent piece! I look forward to tomorrows. Dealing with the media is always frustrating and I can see why Amy is having problems with that. The only problem I have with what she wrote and I think the only redeeming thing AS has ever done was get Autism known. When my son was diagnosed in 2000 most people (including me) had no idea that it existed. There has to be an acknowledgment and an awareness before the work begins and they did get awareness out there, quickly. What they didn’t do was learn along the way, they didn’t adjust or listen and grow and that is where they failed (and continue to fail). I hope and pray that they start listening! I hope that everyone’s voice is heard, no matter how they communicate.

  2. Reblogged this on Spectrum Perspectives and commented:
    WOW – a must read: ” 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.”

  3. dear jess, u always say it so well. as for lil ol me who “live with serious co-morbid medical conditions, are in pain and seeking a voice to advocate for them.” permit me to share a podcast episode highlighting #autisticchampions who found purpose, success, and full lives = http://bit.ly/1DqPTHs = Title: Define your Destination …and i should mention the show’s head writer and owner is #actuallyautistic with u 4 positive change b

  4. I threw out a few tweets of my own using the original hashtag, and I got to learn from a new-to-me autistic tweeter and about a new-to-me organization. That’s probably not what Autism Speaks intended for that hashtag, but I’m not in this for Autism Speaks. I’m in this for the wonder that is Baguette.

  5. Excellent piece! I commend you for addressing the issue. Although Autism is not something that is in our family, I wholeheartedly stand with you and pray that a difference will be made on behalf of the many many folks that deal with it daily. Those that have no voice need for others like you to step up for them. Thank you for all of your input and everything you do for those that are Autistic and their caretakers. I have utmost respect and admiration for you!

  6. Psst, “female” should be replaced with “ovaries wielding” or something on ur comparison…. Gotta stick up for ur trans autistics.

    But this article is SO IMPORTANT.

  7. Reblogged this on Lost and Found and commented:
    The recent attempt of actually Autistic people to be heard above (and in spite of) Autism Speak’s 10 year anniversary has been interesting, to say the least, and obviously not at all what they were expecting. Certain outlets of the media “attempted” to cover the story – including MTV, which I tried to comment on only to realize that the story had been pulled – with disheartening results. This article is reblogged from Jess (Diary of a Mom), one of the most intelligent and eloquent voices I’ve heard out there for Autism advocacy.

  8. Pingback: Autism Speaks, You Just Can’t Hear Us | My Everyday Life

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  10. Pingback: I am autism and I have a voice. #BoycottAutismSpeaks | Crusading Against Hate: Why I #BoycottAutismspeaks

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