Disability and Representation

Changing the Cultural Conversation

I Am So Sick Of Autism

Yes, I’m sick of autism.

No, I’m not sick of Autism the Condition. That I can live with, although it’s a complete pain in the ass sometimes. But what isn’t?

So that’s not what I mean. I’m talking about everything that isn’t actually the condition:

Autism The Event.

Autism the Tragedy.

Autism the Gift.

Autism The Epidemic.

Autism the Blessing.

Autism the Puzzle.

Autism the Next Step in Human Evolution.

Autism the Reason to Pound People Over the Head Because My Life Sucks Worse Than Yours.

When it comes down to it, what am I really sick of? I’ll tell you: I’m sick of autism The Condition That Must Be Interpreted.

Do we really need one more study about what causes autism? Do we really need one more article about how people with autism rock your socks off? Can we stop with the inspirational memes about autistic geniuses Who Overcame The Odds And Beat Autism Into The Ground? Can we call a moratorium on posts about how autism is an Epidemic of Tragic Proportions Never Before Seen By Human Beings? Can we please, please, please stop talking about autism as though it’s actually a thing that stands alone from actual people?

I know I’m old and jaded. Well, no, not really. Yes, I’m old. But I’m not jaded. I’m the opposite of jaded. I long for the time before autism was A Thing. I grew up before autism was A Thing. I grew up just being, you know, a kid. Just a kid. A kid with lots of what are now politely called issues, most of them unarticulated, but just a kid. I played baseball. I climbed trees. I stayed up till all hours. I read lots of books. I was quiet. I was kind. I had lots of plans for the future.

It would have been good to have articulated my issues. Seriously. I wish someone had helped with that. I wish someone had taught me how to take care of the body and mind that I had been given, rather than the body and mind that everybody thought I’d been given. I wish someone had given me a language for the particulars of how my mind and body work so that I wouldn’t spend the next 50 years of my life driving myself into the ground.

Really. I do wish for all that.

But I am so, so glad that autism wasn’t A Thing then. So glad. Because now it’s A Thing — A Thing that shadows me wherever I go. A Thing that I have to decide to disclose or not. A Thing that’s like a big box that I’m supposed get in and stay in and say This is Me. I often wonder who made that box, and I often wonder why they made that box, and I often wonder why people spend so much damned time talking about that box, worrying about that box, describing that box, and making money off that box — and spend so little time listening to and providing support to the people they’ve put in that box.

And sometimes, I wonder how the hell I even got in that box at all. I don’t recall that box even being there for the first five decades of my life. Did it just grow up around me and enclose me? Or did I jump into it, not realizing how hard it would be to get out — not realizing how hard it would be to say, in a world of boxes, that boxes feel suffocating?

My therapist in Brattleboro used to say that all labels are a box. Labels can be useful — for services, for finding kindred spirits, for getting support. But when it comes down to it, the support really needs to be about very particular things, not about the box, because all of us have very particular needs. None of us look like what’s advertised on the outside of the box — not completely. For me, the main disability is auditory. For someone else, it’s tactile. For someone else, it’s multi-sensory. For someone else, it’s a whole other constellation. You can’t put all that on a box, no matter how big it is. The label will always be a vast oversimplification.

I’d like to get out of the box now.

I’d like to just be Rachel again.

Just Rachel. Rachel who needs quiet in order to hear. Rachel who needs clarity in communication. Rachel who sees word pictures in her mind. Rachel who loves organizing, and who has a passion for so many things, and who can focus like a laser beam on any of them. Rachel who never stops thinking. Rachel whose heart is broken by the world on a regular basis. Rachel who fiercely hopes for better.

That Rachel. The one I’ve always been. The one outside the box.

© 2013 by Rachel Cohen-Rottenberg


    21 comments already | Leave your own comment

  1. 4/24/2013 | 2:01 pm Permalink

    Love that Rachel <3

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  2. 4/24/2013 | 2:16 pm Permalink

    YES!!!! I realized (again) that I’m been trying so hard to let my kids just be kids, supporting them however they need to be supported, accommodating them however they need to be accommodated, growing them and loving them …. and being a parent. Of course being that kind of parent in a world where I have to step ouyt of myself and put their little bodies and minds in all of these crappy boxes just to get them the supports etc…that messes with me. Sometimes I find those medical and educational boxes become gray-colored glasses, and that I start to see my kids through them, and I get so so angry at myself…throw them off, and try to just be mom again. Then I noticed myself wanting to belong in a community that I was trying so hard myself to fit in the same damn box, so that what I said, what I did mattered. So that *I* mattered. And yeah, that’s just not me. What makes me ‘me’ is not fitting in anyone’s box. I miss when it was about human rights…everyone’s rights. Everyone’s right to be his or herself…safe, respected, appreciated, valued, flawed, celebrated, human.

    Thank you Rachel, for writing this. And being Rachel.

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  3. 4/24/2013 | 2:39 pm Permalink

    I happen to think Rachel is pretty cool :) I really like how you were able to explain this. Thanks :)

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  4. 4/24/2013 | 3:24 pm Permalink

    Some years ago, when a friend started talking about autism, I didn’t particularly want to hear about it. I was sick of labels and boxes. They’d done me no good in this lifetime. Being too old to have any authority figure suspect that autism was at play, II was labeled with many other things. Those labels did not not really apply, sotrying to work inside their frameworks did more harm than good.

    We’d all prefer, I think, to get to “just be me.” But, in this society, right now, nobody gets to do this. Even those who don’t think they’re labeled are, and the box called “normal” is pretty darned rigid.

    I understand your frustration (I think). I am more than glad, however, that you fit into the autism box well enough to articulate what it has meant and does mean to you, including this. It’s helped me, and many others. Oh no. I don’t mean that you’re an inspiration (gasp!) but that your insights and understandings have been helpful. That’s really important to others. I hope it’s helpful to you (and I hope this is,, too).

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  5. 4/24/2013 | 5:15 pm Permalink

    This sort of dovetails with something I realized earlier this week, when I was having a conversation with someone I’m working with about autism, and some of the particulars of what I think, and he echoed the “if you’ve met one person with autism, you’ve met one person with autism” line…and I realized why that saying has always sort of rubbed me the wrong way.

    If you say “If you’ve met one person, you’ve met one person…” or “If you’ve met one person without autism, you’ve met one person without autism,” that’s so totally obvious that it’s comical.

    And we ARE just people. But the way that autism is conceptualized right now, as soon as that’s in the equation, the obviousness that we are really just people goes out the window..yes, because autism is this THING. And not just that a person has features of neural configuration more suited to picking up detail than generalities, and some kinds of patterns instead of other kinds of patterns.

    But how totally not scary/inspiring/whatever we’re supposed to be today does that sound?

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  6. 4/24/2013 | 5:34 pm Permalink

    Great! My son says “Why can’t autism just be a *thing?* Like, birds are a thing. Blue eyes are a thing. Why can’t autism just be a thing?” The whole thing ;) is here: http://paulacdurbinwestbyautisticblog.blogspot.com/2013/04/if-youre-trying-to-cure-something-its.html

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    • 4/24/2013 | 6:37 pm Permalink

      Yes! That’s what I want. That the fact that there are autistic people and non-autistic people is as simple, obvious, non-controversial, and accepted as the fact that there are, like, introverts and extroverts, artists and scientists, blond people and brunette people–and those things don’t mean that somebody isn’t still an individual in every way just because there is some kind of category that helps people to understand some aspect of themselves or the way they work.

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  7. 4/24/2013 | 6:44 pm Permalink

    I’m glad you’re the Rachel we’re privileged to read.

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  8. 4/24/2013 | 7:00 pm Permalink

    This strikes right at the heart of what I now realize has been a life-long struggle for me: the struggle to avoid the label — any label.

    Isn’t this what you’re talking about?

    I had a friend long ago who was a dancer, and a very good one. But she wouldn’t claim the label. “I dance a lot” was as afar as she would go.

    Labels are the box. And boxes serve both to protect us and to isolate us. Once the label is applied, once the box is created, it’s hard to be anything other than the label.

    That’s probably why I’ve never accepted the various “career” titles that were available for me over the years — titles that went along with jobs that I was doing very well but, like my dancer friend, weren’t “me.” And it’s probably why I have such a hard time answering the question, “what did you do before you retired?” I now realize that I simply don’t want to be labeled in anyone’s mind — including my own.

    I didn’t marry an autistic woman: I married a beautiful, warm, loving, giving, caring, generous, and incredibly capable woman who, it turns out, happened to also be autistic. Would the awareness of the label have made any difference to me? All I can say is, it sure doesn’t make any difference now.

    But I sure understand the box that the label creates!

    The good thing about most boxes is that they can be recycled into something else — but they have to be destroyed first…

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  9. 4/24/2013 | 9:29 pm Permalink

    This is wonderful.

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  10. 4/25/2013 | 5:59 am Permalink

    Thank you. Just thank you. Finally someone has the nerve to just say it. Nobody should be boxed in. And the entire conversation is getting very tiring. I’m sick of it too. So thank you.

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  11. 4/25/2013 | 12:27 pm Permalink

    Nice to meet you, Rachel the writer.

    That was a beautiful piece of writing which honored your Aunt Sarah – you gave her a voice, made her memorable to the rest of us.

    I have been reading Dave Hingsburger’s blog, daily, for inspiration and wisdom.

    I’m looking forward to reading a lot more of your writing.

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  12. 4/25/2013 | 1:20 pm Permalink

    Right on, my friend!

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  13. 5/21/2013 | 8:43 am Permalink

    Dear Rachel,
    I heard and believe that a diagnosis (label) should be a ladder not a lid. A description that merely provides a beginning point, not a place or a destination.
    Concerning “old”: a friend says we might choose to affirm ReFIREment, rather than ReTIREment. ReFIREment is being open and creative throughout life where one never stops learning, creating, living on the edge of wonder, where synchronicities happen over and over again. As the Rethinking Everything Conference that takes place near Dallas every year states, “Love what you do, and do what you Love.” One might also say, “Love who you are and be what you Love.”


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  14. 7/9/2013 | 4:04 pm Permalink

    Hello, Rachel. I just wanted to share some thoughts this entry provoked. I hope it doesn’t come across as rude as my writing style can be kind of rough. ~~

    Some people are loud & proud. Some are very reserved. I think it really only matters how the person with autism wants to approach this.

    A little insight: There are really only two camps in this debate: the parents (mostly the Moms since they’re very outspoken and heavily involved) and the autistic person. If you’ve ever hung out in autism forums you would see that often times an adult with autism is fundamentally at odds with the autism-parent community. It is sad and unfortunate.

    You will find that many ASD-parents (I happen to be a mom of children on the spectrum) have certain approaches when dealing with their calling. I would say that these approaches change over time and are affected by the severity of the autism. In other words, each parent responds/reacts/deals with the autism label differently. But, and i think many would agree, there comes a time when we need to listen to what our children tell us:

    If YOU have autism (Im thinking of my own kiddos here) and can speak for yourself then I want nothing more than to honor your wishes, even if it means not bombarding people with inspirational stories of people with autism because you feel it is excessive or counterproductive. The outspoken people with autism have , in the past, made me rethink my support of groups like Autism Speaks, for example.

    I think that as a parent (to small children) we can easily think it’s all about us. After all, we are THE mouthpiece for our kids, THE advocate, THE fighter for them. We don’t label our kids in a negative way but to get the point across to others that, “Hey, Society, we might be a little bit different but don’t be an asshole to us. While you’re at it, get educated.” Perhaps you don’t understand how ignorant some people still are?

    This entry you’ve written, “I am so sick of autism”, is full of wishy washy points with no distinction between positive and negative attention or publicity. (I say nothing about special organizations which have their own agenda as I’m sure we can agree they should most definitely be given correction.) It is oversimplistic and unfair to many parents or loved ones who feel that they do indeed have to push it into peoples’ faces in order for them to “get it and accept it”, and this often includes other family members who are in denial! I would ask those who are adults with autism to kindly keep this in mind. Many of us want to do right by them, as they are often an enlightening bridge to our own children. Unfortunately we are not naturally of one mind… yet.

    I know of your credentials but this post came across as though you were exasperated with autism in general and tired of seeing it get so much attention. Perhaps you shouldn’t just write blanket statements but instead show how we can be positive and accepting without being dramatic and superfluous. I firmly believe that once this “in” phase that you’re so annoyed with is over there will be another phase to take it’s place – that being one of acceptance, common knowledge, and of ASD just being another “thing” as Paula’s little boy put it. I also look forward to that day.

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    • 8/24/2013 | 3:35 pm Permalink

      “In other words, each parent responds/reacts/deals with the autism label differently.”

      Some proudly *wear* it.

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    • 11/13/2013 | 6:48 am Permalink

      I felt the same way. And someone said to me she has Aspergers and you can’t tell her how to feel. To which I responded, shes not correct simply for that reason. If intake issue with something I take issue with it regardless. This leaves me feeling powerless to help my daughter if I should just shut up because someone is annoyed. Knowing about an issue provides greater understanding and help. And advocating for my daughter to be equal isnt something I view as bad or annoying. I mean…I dont get it. I’m a fierce advocate and this makes me feel like thats all in vain…I know it isnt…but this kind of stuff is discouraging.

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  15. 7/22/2013 | 5:45 am Permalink

    YES! I too am “on the Spectrum,” and, as you put it, “It would have been good to have articulated my issues. Seriously. I wish someone had helped with that. I wish someone had taught me how to take care of the body and mind that I had been given, rather than the body and mind that everybody thought I’d been given. I wish someone had given me a language for the particulars of how my mind and body work so that I wouldn’t spend the next 50 years of my life driving myself into the ground.”

    It ALSO is horrible to have the media and medical circus going on. Parents grieving for a hug “oh, poor me,” all sorts of quackery from bleach enemas to diet fads that make me wince just thinking about the suffering those kids are being put through, the profiteering, and so on.

    THANK YOU for hitting the target with this wonderful essay!

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  16. 11/13/2013 | 6:25 am Permalink

    While I can somewhat get your point for yourself. My daughter is 3 and has no voice…I HAVE to be her voice and fight for services and acceptance so one day she will be seen as just who she is. And I’m not interested in someone being sick of my advocacy for her. Ive not made Autism “a thing” others have and made it a bad thing. Its already an uphill battle for acceptance and I won’t be shutting up and sitting down anytime soon. I dont even know what this piece is seeking to accomplish. Her “label” gets her what she needs. Shes only “boxed” in if I sit back silently and let her be…this just rubbed me wrong. There is just no way to win or do anything right I guess.

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    • 11/13/2013 | 11:28 am Permalink

      Sandy, this post wasn’t about people advocating for their children. It was about the media constructions of autism that make it very hard to advocate for ourselves. And it was about my own personal feelings regarding living in a world saturated by those constructions. That’s all it was about. My feelings are not a directive for anyone else. They’re just my feelings.

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