why i #BoycottAutismSpeaks

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{image is a photo of me at a lectern, addressing the crowd at an Autism Speaks dinner in Hartford, CT. I believe it was 2009.}

I thought that I was doing right by my child.

(I didn’t know yet how radically I wasn’t.)

I thought that I was fighting for her.

(I was fighting HER.)

I raised money.

(A lot of it.)

I gave speeches.

(To get other people to give money too.)

I thought that helping my daughter meant finding a cure for who she is.

(Think about that.)

I brought my daughter to places in which she — in all of her beautiful, glorious, tangled Brookeness — was being called a tragedy, a scourge, a casualty of a brutal epidemic.

(I am so sorry, baby. So, so sorry.)

And then I started to get it.

To understand the damage being done to autistic people in the name of helping them.

(I listened to autistic adults.)

And I asked Autism Speaks to listen too.

Again.

And again.

And again.

They refused.

Again.

And again.

And again.

And again still.

I wanted so badly to believe that they had the capacity to evolve. To listen. To recognize the travesty (and danger) of demonizing autism and, in so doing, dehumanizing and further marginalizing autistic people. I wanted to believe that no one could really be so callous as to dismiss (and, at times purposefully silence) the voices of those for whom they claim to speak.

I tried hard. I hung on for far longer than I should have. I wanted to believe. But misplaced optimism isn’t going to help my girl to fight the stigma that Autism Speaks fortifies every time they describe her and her brethren as missing, lost, gone, bankrupt, broken, part of a tragic epidemic which is stealing our children.

My daughter is autistic. Autism is not an accessory for her nor something that can be excised from her being. It informs and affects and creates her perceptions of the world. It is the filter through which she tastes and smells and hears and sees and feels EVERYTHING. She is not only autism, certainly, but autism is as big a part of her identity as my gender is part of mine.

You don’t mitigate saying to an Autistic person, “It’s not YOU that are a burden,” by clarifying, “it’s just your Autism that makes you a burden” any more than you would lessen the blow of saying that women are a burden by saying, “Oh, but not YOU, just your femaleness.” You can’t separate with words what is not separable in reality.

I often tell a a story that I heard at a conference many years ago about a young man who had been told that Autism was a “bad guy” in his head, making it hard for the “good guy” (presumably his non-existent “non-autistic” brain) to do its work. The young man, quite logically, put a gun to his head to kill the bad guy.

The destruction of Autism is the destruction of human beings. Autism Speaks’ goal of eradicating autism says to my child, “If we could have helped it, you would not have been born.” As her mother, I cannot let that stand.

I continued to work with AS for a long time. They were too big, I reasoned, too powerful, to walk away from. I believed that I could make an impact in their messaging. In some ways, I’d still like to believe that I did. I stuck around because I had to do everything in my power to help to save my daughter and a generation of others from growing up believing that it’s okay to say that they never should have existed, that eradication of people like them is an acceptable goal, that, in many cases, they’d be better off dead. I believed that I could make Autism Speaks understand the irrevocable damage that they were doing to the people whom they purport to represent.

I couldn’t.

And that is why, despite my best efforts, I #BoycottAutismSpeaks.

Because my child is not lost. She is not gone. And she sure as hell is not a burden.

16 thoughts on “why i #BoycottAutismSpeaks

  1. Once another parent explained to a group of kindy kids (of which my son was one of the kids) that kids with Autism have broken brains! I know she was trying to have the kids understand that we all have different brains, but that is the ONE thing my kid remembered (and didn’t know that he had Autism). I still remember the pain when telling my kid his diagnosis, and him asking me if his brain was broken. Such a sad day. NO, you have a beautiful brain, as does everyone.

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  3. I boycott autism speaks for other reasons. like the only 3% of their budget goes to families. (i looked at their taxes).
    Autism is a genetic predisposition to environmental assault causing injury. My son;’s environmental assault was actually a flu virus. I know many for whom it was vaccines. I know many for whom it was antibiotics. What we don’t know yet is how much of the injuries can be mitigated. I am all about treating underlying medical issues (like a genetic inability to detoxify out viruses) that may be contributing to my son’s anxiety with biomedical treatments and I know thats a different path than you took. What I respect most about you is that you have NEVER in all the years I’ve read your blog, made me feel like i was negating my son’s personality by treating underlying medical conditions.

    • I agree and I know that early critism of Autism Speaks is that they wouldn’t put any research dollars into vaccine safety studies causing a rift between their own daughter and grandson. Autism Speaks believes that vaccines have been shown to be safe for most children and are important for preventing serious diseases such as measles and mumps. It recognizes that some individuals may have adverse reactions to, or respond poorly to, vaccines, and advocates research into identifying any subgroups of such individuals and mechanisms behind any such reactions.[9] This has strained relations between the Wrights and their daughter Katie, the mother of an autistic boy. Katie believes her son’s autism was caused by thiomersal, a preservative that was formerly common in children’s vaccines in the United States; no major scientific studies have confirmed this hypothesis.

      While neither of my children met the criteria for Austism they both have sensitive immune, GI and neurological systems. We have benefitted from the Autism research that is available and while I am not interested in having them being “normal” or neurotypical I am interesting in them feeling good in their bodies. When there tummies hurt for weeks on end, when the anxiety makes school impossible or the derpession makes them feel suicidal (they are 9 and 11) I ache. My mother is an alcoholic, has the genetic for difficulty methylating. If I can do something that will prevent undo suffering for my children with biomedical and dietary treatments I will.

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  6. Perhaps I’m misintepreting here, but as someone on the autism spectrum, I personally have often wished I could have been born without the things in my head that make it harder for me to function as a rational, “normal” adult.

    You seem to be saying that the desire to eliminate autism is equivalent to a desire to prevent your lovely daughter from being born. Isn’t that a pretty severe accusation against people who in many cases have autistic children themselves, and have in any case probably never even met you or your daughter? Couldn’t it simply be a desire not to eliminate the children themselves, but rather the syndrome of autism? Could it not mean a desire to have children born, including your daughter, without what many parents of such children and others see as an impairment to “normal” functioning? (Yes, I know, “normal” is a very subjective word.)

    As near as I can determine, the conflict between those who support Autism Speaks and those who oppose it (and instead support other groups like the Autistic Self-Advocacy Network) seems to be this: The former is approaching the issue from the perspective of the parents and other family members living with an autistic child or relative, who have difficulty communicating with or understanding them. The latter is approaching it from the “inside” perspective of the autistic themselves, who see the syndrome as not being an impairment or illness, but an integral part of who they are that makes them more unique and gifted at certain things than they would be without it. If I am seeing this inaccurately, I welcome corrective information.

    • What I would say is that people advocating for something like acceptance are not saying “it’s a gift” and denying that there are negative aspects to life on the spectrum. In fact, many of these folks state repeatedly that autism can be a disability and they have no problem acknowledging the challenges and the hard days. So, I don’t think the conflict is “acceptance” vs. the Autism Speaks view, which you’ve described as, essentially, “we support the child but want to remedy the autism stuff” (you stated this more eloquently, sorry for the crude abbreviation here).

      The conflict, as I see it, just gets down to: what’s the best way to create better lives for autistics? The language of Autism Speaks is not simply describing the disabling aspects of autism…they refer to autistics using animalistic, dehumanizing terms…they are “burdens”, “tragedies” and so on. This kind of language stigmatizes autistics…it’s not helping them, it’s throwing them under the bus as part of their fund raising efforts. It’s a cruel, demeaning rhetoric that works against the very people it claims to support. I’ve heard more stories than I can count about parents taking their autistic kids to AS walks…only have to have a speaker from the group get up and describe autistic kids are “damaged”, as “burdens”…just extremely awful that those kids had to stand there and hear that. And even if they didn’t hear it…this is not the way to advocate for anyone. Again, the message of Autism Speaks is just tone deaf and stigmatizing. It doesn’t promote better understanding of autism…it promotes outdated stereotypes and painfully negative views of autism.

      It’s also worth noting that AS represents a parent perspective…when they talk about the “burden” stuff, they’re talking about the challenges parents face raising autistic children. They forget: the kids are valuable in and of themselves. Parent perspectives are vital and should absolutely be a part of these discussions…but autistic perspectives are just as vital. AS forgets this. They forget that autistics are human beings.

      (I would add something that is striking to many of us…AS seems to not notice this: autistic kids? Grow up to be autistic adults. Adults who can communicate in many cases, either with words or with alternate methods…they are adults on the spectrum with stories and perspectives and a desire to take part in these discussions…yet AS consistently excludes these perspectives. Autistics with more severe communication challenges, who may not be able to participate in these discussions? They actually deserve MORE sensitivity and care and respect, not less. They’re the most vulnerable and therefore the most deserving of our protection and care. But instead, Autism Speaks reserves the harshest of the rhetoric for them…it’s wrong and disturbing for many of us.)

      Those opposing Autism Speaks just want the opposite of all of this dehumanizing rhetoric. Not to deny the difficult stuff…no one wants to pretend there aren’t hard days. Many autistics who accept their autism still struggle with sensory pain and/or communication difficulties and/or many other issues. And yet…they still have a profound need to be recognized as human beings…they still want to live with a sense of dignity, respect…and to be part of ongoing discussions about what autism is and what it means to be autistic. Autism Speaks just fights these very basic and very humane desires, pretends they don’t exist, and consistently doubles down on the hateful, parent-centric “burden” narrative.

      Autism Speaks excludes too much, shuts out too many and does way more harm than good when it comes to shaping how the general public views autism.

      I’m not saying you’re wrong with your views…certainly you can look at these various discussions and reach your own conclusion. My only goal is to point out that the conflict here, at least as I see it, is not “autism is a gift” versus “autism is challenging”. The conflict is: “What is the most humane, constructive way to discuss autism?” versus “What is the most stigmatizing, destructive way?”

      Thanks for the discussion Matt, I hope this is helpful, at least in terms of clarifying where some of us are coming from.

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  9. Please use person first language.

    And why do you think there needs to be a cure for Autism? Individuals with Autism have extra quirks and just want to live life. Why is the fact that your daughter has Autism a problem? Why are you trying to change the person she is?

    I wish I could’ve read everything you wrote, but you lack of person first language made it hard to continue past the first 5 or 6 lines. But please, love your daughter the way she is. There’s nothing wrong with her, she is perfectly her.

    • I refer to her as autistic precisely because I honor the person she is, a fabulous, wonderful kid who is very proud to be autistic. (If you kept reading you’d see that’s kinda the whole point of the post.

      As for insisting on language that separates her from her neurology and identity and is diametrically opposed to the preference of 99.9% of the autistic adults I know? Just no.)

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