why

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Three times in the last two weeks, I have been asked some version of the same question. Why do you continue to engage with Autism Speaks when you clearly find so many things about the organization so troubling?

Three times, I have answered essentially the same way.

Because they are visible. And because they are visible, they are the ones that parents of newly diagnosed children most often find first. They are the ones that they turn to when they are desperate for help. For the vast majority of parents, they are the first destination for resources, direction and guidance. And in many ways, I find that terrifying.

You see, I am deeply troubled by the disease paradigm to which Autism Speaks has stubbornly adhered despite widespread protest from the autistic community. I am troubled by the subsequent assumption that a “cure” (whatever that might really mean) is the ultimate goal. I am troubled by the notion that pity and fear are necessary to raise money and that the dignity and humanity of autistic people can ever be an acceptable cost of doing business in their name. I am troubled by the startling lack of autistic people in meaningful decision-making roles in the organization. I am baffled by the notion that parents are the only real authority on all things autism.

And yet I do not walk away from the conversation. Why?

Well, there are the reasons that I’ve talked about a thousand times before. The fact that despite themselves, they do a lot of good. They fund massive research projects that no one else can — some that might just make life better for my girl, not in the far off future, but in the here and the now. Research into some of the nightmares that plague so many autistic people — epilepsy, sleep disorders, GI issues. The resources that they offer — from helping to create one stop shops for holistic health care to comprehensive, state by state lists of service providers. Those are good things. Their political advocacy, fighting the endless battles to stop insurance discrimination. The really, really good people within the organization who get it.

But none of that really answers the question. This already did …

Because they are visible. And because they are visible, they are the ones that parents of newly diagnosed children most often find first. They are the ones that they turn to when they are desperate for help. For the vast majority of parents, they are the first destination for resources, direction and guidance. And in many ways, I find that terrifying.

So I stick around. Because when those parents show up, I want them to hear voices like mine. Voices of parents who can tell them, from our perspective, that it’s going to be okay. That where they are right now is not where they are going to stay. That there is help. And support. And that their children may struggle, but with that help and support along with love and acceptance they can lead full, satisfying, glorious lives IN THEIR OWN WAYS.

And more importantly, I want them to hear the voices of adults on the spectrum who can tell them, from their perspective, that it’s going to be okay. That where they are right now is not where they are going to stay. That there is help. And support. And that their children may struggle, but that they are not broken. And they can show them, by example, that with help and support along with love and acceptance they can lead full, satisfying, glorious lives in their own ways just as they are. (Ed note: There are two ways to read “just as they are.” I mean them both.)

Autism Speaks shared my post the other day, as they often do. They put it on their Facebook page. This one …

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1,129,670 people follow that page.

I’d have to imagine that 80% of those people are parents of young children, but let’s call it 50% for argument’s sake. That’s 564,835 autistic children whose parents are on that page looking for guidance.

And on Tuesday, those parents heard my voice. And my voice that day was no more than a conduit for the voices of experience — Kassiane, Sparrow Rose Jones, Amanda Baggs, TPGA, ASAN. 564,835 children whose parents were exposed to a different way of thinking about autism, about the future, about their children.

So why do I continue to engage Autism Speaks despite my fundamental issues with them?

564,835 children.

That’s why.

24 thoughts on “why

  1. My feelings exactly. (Except, I’m not getting featured on the AS website 🙂 )
    Ultimately, there are no individual ppl or organizations, no matter how much good they are doing, that you will agree with 100% of the time. The point is to keep talking and to be a part of the changes you want to see.

  2. This is a really good writeup. My mom keeps pushing AS on me, and I’ve resisted, but you bring up some excellent points as to why I shouldn’t write them off completely.

  3. That was a really beautiful post. I’m new to the whole autism scene and it’s a learning experience for me, too.

    I’m a scientist studying the possibility that excessive prenatal sonography could promote symptoms seen in autism (which is why I made my blog, http://www.fetalsonosafety.com)..

    AutismSpeaks was the first organization I found while studying up about autism, so you’re right about it being visible… as for the “cure” thing, well – I’ve heard that concern from lots of parents but at the same time I don’t really understand it completely.

    Parents are very defensive about “looking for a cure”, but I don’t understand why yet..from what I understand, it seems very possible that something physical could be triggering it in instances. I mean, if ultrasound were a culprit, for example, the “cure” would be simply not using it as much.

    When AS talks about a cure do they have a different tone?

    • I think Temple Grandin or Andrew Solomon could give you a more eloquent answer then me.

      I don’t want to cure my son, I love him and enjoy the person he is. To try to cure him is trying to turn him into someone else. I never ever ever want him to get the idea that I would love him more if he were someone else, because its not true and hurtful.

      I think preventing is different then curing, however if I could go back in time to prevent it from happening I still wouldn’t. Because that child wouldn’t be my child.

  4. Agreed. There’s a part of me that wishes all of us in this autismland could stop questioning the motives of every single decision one of us makes. It’s hard enough that those who are NOT part of autismland question our decisions. And then I read a measured response from you to one of those questions and I remember to be grateful for the questioners (not necessarily in the moment–when I’m usually just really annoyed). For without these questions, you wouldn’t have the opportunity to explain the thought process behind some decisions. Well done.

  5. I think sometimes when we work our way through life with an autistic child, we can forget what it was like in the beginning, that this change/this acceptance that took us years to get to should happen overnight for parents of newly diagnosed kids. We have to remember that in the beginning this word was like evil to us, it took away our ideas of what our child would become.. now, of course, I know that those ideas would just be as ethereal if my son was neurotypical, he could still have grown up to be someone markedly different than those ideas I had when he was born, but being his mom I would love him no matter who he was, just as I do now. New parents need time, guidance.. they will get there.

  6. i couldn’t agree more with your stance here. the people and groups with flawed beliefs are precisely the people we should be the most engaged with. simply walking away from them, as many like to do, just leaves the problems in place…far, far better to engage with these groups and try to make improvements from the inside. i really admire your desire to work with austism speaks…hope you’ll continue, it’s definitely the right thing to do.

  7. I went to Autism Speaks first. It was the only place I knew to turn to. Then I quickly turned to other avenues and found my own voice. But yes, they are visible. And working with the “visible” can help open doors for other points of view. Great post as always 🙂

  8. Like Krystal, I knew mostly about Autism Speaks, but somehow, it just didn’t feel quite right. I didn’t like the fact that they were so desperate to find a cure, giving the impression that autism was something bad, to get rid of, quickly. I don’t want to get rid of my 4 year old son’s autism. It’s a part of him. I want to be able to understand him better to help him as much as I could, but that’s another issue.

    And then, I found you. Thanks to Autism Speaks. Just like your post says. I’m very grateful for that. Thanks to them, I have found someone who embraces the autism world, just like I wanted to embrace it, but felt alone in that way of thinking. I am so happy to have found my new friends.

    • Damn it. I am so sorry to hear that, JER. Hopefully that dynamic can return with the person who recently took over his role.

      • His name is Michael Rosen. He has only been with the organization since mid-April, so perhaps he’s still getting settled into the role, but I’d certainly reach out to him. His title is Executive VP of Strategic Communications. According to the article I read, he has an adult son on the spectrum.

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