December 5, 2012

Because I remember

Posted in Marginalization, Uncategorized tagged , , , at 2:56 pm by chavisory

Two major considerations of autism and the place of autistic people in society sort of collided in the news media this past week.  First, the New York Times’ Sunday Magazine ran a long piece, “The Autism Advantage,” on a European company, Specialisterne, whose mission is to find supportive employment opportunities for people with Asperger’s Syndrome in the tech world.  And second, the House of Representatives held the first hearings in a decade on rising diagnostic rates of autism spectrum disorders.

In both forums, it quickly became apparent, as it often does, that by having any ability to take an active role in our own lives or discussions about us, our right to do so is discounted by many.  The comments section of the Times article quickly exploded with criticism that because some autistic people are too severely affected to ever hold jobs, the article was irresponsible or trivializing, that the employment concerns of the so-called “high-functioning” had no place in discussions about real autism.

And the originally slated panel of witnesses to Congress included zero autistic people of any stripe.  When Michael John Carley and Ari Ne’eman were added in response to pleas from the advocacy community, complaints resulted that two such “high-functioning” men couldn’t truly represent autistic people, or did so inadequately because their testimony didn’t focus on the need for a cure for “lower-functioning” people.

Effectively, that because some autistic people have severely compromised communication abilities, we should not have been represented, in a Congressional hearing about the federal response to our existence, at all.

And I’ve lost count of the number of times in online discussions when I’ve been told that I’m nothing like someone else’s child, couldn’t possibly understand what their child goes through or have any idea what it’s like to be their child…before they list off a litany of experiences that sound a whole lot like my own childhood.

(Or sometimes not.  Sometimes someone else’s experience with the autism spectrum is actually radically different from mine.  It’s called a spectrum condition for a reason, and we know this, better than anyone.)

I may never be able to convince these people that my experience has anything in common with their children’s.  I know that no single human being can ever truly know the experience of being another, but I also can’t convince myself that I have no place standing up for those kids.

Because I remember getting the message so often, in so many ways, that there was no place for me in the world as I was, that I was never going to make it in “the real world.”  That I wasn’t going to be allowed to make it if I wasn’t going to do a better job of pleasing others.

I remember not being able to look the way I was supposed to, talk the way I was supposed to, dress the way I was supposed to.  I remember not being what anyone wanted.

Because my heart broke for your kids when Michael John Carley asked the nation to remember, when we talk about the autistic, that the vast majority of us can hear and understand what you say about us—and a gallery full of people behind him angrily shook your heads “no.”  Because I remember being told again and again that I could not be perceiving what I was perceiving, and being told that I couldn’t or shouldn’t be able to do what I knew I could.

Because I remember having no one who spoke or understood my language, and losing hope that I ever would.  I remember having no one who thought that the world as I experienced it was worth respecting or understanding remotely enough to be any help to me.

Because I remember the constant implication that the ways I was being treated were acceptable because the way I am was not acceptable.

These things wear you down, day after day.  The memory of it all wears on me still.  I want better than that for your kids.  I think we can all do better than that for your kids.  I’ve cited before, and probably will again, the quote from Adrienne Rich:

When someone with the authority of a teacher, say, describes the world and you are not in it, there is a moment of psychic disequilibrium, as if you looked into a mirror and saw nothing.

I think that all of your children deserve to see a world with them in it, and belonging in it.

And far from our abilities disqualifying us from that role, I believe that our communication abilities and everything that we’ve done and learned for ourselves are all the more reason why we have a responsibility to stand up for kids like yours.  If I were to decide that because of the gap in our apparent abilities, that they and I have nothing whatsoever to do with each other….If I said “You’re right; because I can speak and write and have a job, and your child might not ever, then his rights, dignity, and well-being have nothing to do with me,” then I really would be guilty of the accusation leveled against activists so often–that we care nothing about the well-being of the more severely disabled.

But I don’t think that’s true.


  1. Hannah said,

    You’ve written this so well.

  2. Yes, yes, yes!!! This!!! Absolutely! So well said!

  3. dixieredmond said,

    I appreciate your writing this. You wrote some truths that are hard to read yet important. I wish there were a list of blog posts like this where a parent like me could read and come away with questions to consider but not feel, er, shamed after reading.

    Not that I feel happy reading this post, because the subject is hard. But it gives me food for thought.

    • chavisory said,

      “I wish there were a list of blog posts like this where a parent like me could read and come away with questions to consider but not feel, er, shamed after reading.”

      Dixie, that’s a really good idea, and I don’t know if a web resource like that currently exists or not…I may spend some time looking around for what the best format for a blog like that might be….

      Are you already familiar with Ibby’s blog, Tiny Grace Notes? (

      • dixieredmond said,

        Hi – Yes, I’ve started reading Ibby’s blog. I appreciate it so much! The title of the blog is perfect. 🙂

    • At my Website, Asperger’s / Autism Toolbox, you can find a bunch of resources, including bloggers. I’ll be adding more over time, but there are already some good ones listed. Also, if you start following the people I’ve listed there so far that are on Twitter, you’ll find their blogs and the blogs of many others. Before you know it, you’ll have lots of good information and insight to consider. I can’t list all the good stuff that’s out there, but my site will definitely help you get started. Just go to and have a look. It’s all organized, so you don’t have to be overwhelmed by a pile of unsorted stuff that comes up on a search engine when you type in “Asperger’s”, “autism”, and “ASD” as search terms.

  4. Very moving post! My little boy is one of those kids. At 6, I could write a very long list of his ‘deficits’. But I prefer to focus on him as a person, a kid who is full of fun & naughty, learning things every day, a beautiful individual. I know that he understands more than he shows and this is becoming more & more obvious as his expressive language develops.
    I have learnt so much from people like yourself. It is a revelation to hear the personal stories and reflections from adult autistics. So thank you for sharing – you make me a better parent.

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