“Rethinking Your Beliefs About Autism”

Emma and I are speaking at the upcoming icare4autism conference  here in New York City, July 2nd.  Over the weekend I asked Emma what she thought the topic of our talk should be.  She wrote, “Let’s talk about mind/body disconnect and how that makes people misunderstand someone like me…”

I told her I thought this was an excellent topic particularly as this conference will most likely not have an audience familiar with the idea of there being a mind/body disconnect or if they are, what that actually means.  In fact this is one of those topics I wish I’d known about from the beginning.  It would have been so helpful had someone explained to me, when Emma was diagnosed, what it meant.  Perhaps more than anything it is the body/mind disconnect that caused me to make all kinds of assumptions about my daughter, which I now know were incorrect.  Because she did not look at me or turn her head toward me when I spoke to her, I assumed she wasn’t listening.  Because she said things that I couldn’t understand or were disconnected from my questions, I assumed she didn’t understand the question.  I believed the words she spoke were the words she intended and meant.  It didn’t occur to me that I was wrong.  It didn’t occur to me that she was thinking a great many things, but had no way of communicating all that she knew and thought.

Both Ido Kedar and Naoki Higashida talk about how their bodies do not do as their brain requests.  Tracy Kedar, Ido’s mom, writes in the introduction to Ido’s book, Ido in Autismland, “Imagine being unable to communicate because you have a body that doesn’t listen to your thoughts.  You want to speak and you know what you want to say, but either you  can’t get words out, or what comes out are nonsensical sounds or the same embedded phrases you have said thousands of times.  Imagine your face staying flat and blank when inside you are furious, sad, or wanting to smile in greeting.”  Later Tracy writes, “Since you cannot express your thoughts, only you know that you are intellectually intact.”  And still later Tracy writes, “Imagine being stuck in an educational program, year after year, that is designed for a preschooler who learns slowly.  You are bored, frustrated, angry, misunderstood and more than a little hopeless.”

Emma has written about some of this before, but in the next month will be writing about her experience with the “mind/body disconnect” more.  I will be reading her thoughts and insights at the conference and adding my experience of what I once believed.  Emma will then answer questions from the audience time permitting, by writing on her keyboard.

I asked Emma what she wanted to call our presentation.  She wrote, “Let’s call it – Rethinking Your Beliefs About Autism”

And so we are…

Em strikes a pose

39 responses to ““Rethinking Your Beliefs About Autism”

  1. lookong forward to learning more about this…. I always learn something new and useful here 😉

  2. Great topic! I did an RPM lesson with several of my clients on this topic. One of the comments that moved me was, “My body and brain feel like strangers who hate each other!” I cannot imagine how very frustrating this must be! Glad you and Emma are sharing this information with others!

  3. That’s a fantastic topic for the conference, and what a great title! As you say, it is likely that this will be a new concept to most of your audience. I’m sure that Emma will explain it clearly with her usual insight. Wishing you both success! xx

  4. lilytigerheart

    Love it! That will be a great topic for the conference! You and Emma will enlighten and educate many! Excited for you both!

  5. I am looking forward to reading Emma’s thoughts on this! While my son has strong verbal skills, he struggles enormously with impulse control. I suspect that this mind/body disconnect goes a long way toward explaining why he knows and understands what he is supposed to do, and yet can’t stop himself from doing the opposite. I would love to be able to share Emma’s thoughts on this, so his teachers will have a better understanding that he doesn’t just have “behavior” problems.

    • Emma has told me that she wants others to understand, so please do share and if you could just add the link to the blog, we’d appreciate it, so others can share as well.

  6. Great topic and title Emma. Looking forward to what you have to say at conference.

  7. I can’t wait to share this with my readers! There are some in particular who I hope already read you because they have children like Emma, with the brain-body disconnect, but I keep sharing things like this anyway because I know how excited they will be to read it and I want to make sure all of them find you and Emma. The stories they have shared with me about “discovering” their children are so very exciting to me and so much echo your story of “discovering” Emma. Sometimes I feel like a connecting wire: Emma talks to you, you talk to me, I bring those words to parents who read me and they, in turn, connect with children they had been told by professionals were not “in there.” I love being one of the connecting wires that helps Emma talk to other children through the rest of us. It’s like being a relay in a circuit of love.

  8. I had no idea this conference was taking place! I’ll definitely make a point of coming–wouldn’t miss it for anything. I’d love to hear Emma speak–both you and she have been instrumental in changing my view of autism. (And I say this as someone who is neither autistic nor a family member or teacher of someone who is.)

  9. One of the first things i typed whe I was young was: my body does not do what my mind wants.
    This is still true but as I got older, I learned my version of “passing”, which means using a lot of energy to interact, type or anything I need to remain focused.
    My body can be rebellious and obnoxious sometimes and very few people have seen how it works, and how it doesn’t. I wrote about my uncooperative body

  10. Very interested to hear more from Emma on this subject – even better (just from my perspective) will be when M can tell us his own experience. He’s an expressive kid in his own way, but I agree that there are those obvious moments when his mind and body are in disagreement, and people see his giggly fits as a sign that he’s not “there” or something…anyway, I’m off to see what everyone says at the triennial/PPT…mood is not good from reading the psychologist’s report.

    • Meeting fun…gl. One school ummmmm forgot (as the non custodial parent only recourse i have is getting a copy…but ADA lawyer called and told them that wasnt acceptable) and other is wed.

      • Went as expected. We’re going up to a new school next year, so I was not planning on hearing anything new, expecting to ignore some of the recommendations, planning on meeting with key people for next year privately – thinking I ought to hand them Ido’s and Naoki’s books as first order of business. Only the school psychologist surprised me by backing up my assertion that M takes everything in and is just unable to express it. Otherwise, was waaaaay wound up and unhappy following….
        Over the years, I’ve tried to engage with the other parents in town, by the way, and they want little to do with us. Of all the kids in our town of 5,000+, there’s quite a few autistic ones, and pretty much all of those other kids are quite verbally proficient. M is the only one who isn’t. All I get is the pitying look that they “figured out” how to “get” their child talking and we didn’t. Phooey on them.

  11. So excited for this topic, emmas posts almost always = aha moments for this mommy 🙂

  12. sophiestrains

    So looking forward to this one! I know my Sophie has this too. Very much looking forward to learning from Emma.

  13. Yes at it’s worse it is like a complete disconnect which is why having some real human reminder can help. Almost as if that harnesses them together although why I am still trying to work out.

    Through out this extra hard time I have had trouble initiating action but it doesn’t even take someone who knows what I am trying to do to help with that. My autistic friends have had similar experiences or of being able to do things for each other we cannot do on our own.

    I also have a stubborn brain. So beyond that it is like my mind and will do battle although that came up mostly in school where you technically had to pass something but the format it was presented in had something so unacceptable to my brain it basically said no way and one part of the brain (the bit that knows you need to pass calculus even if the person teaching it put infinity in a closed set… pleads with the rest of it. Usually a losing case sadly. )

    I think between the disconnect of multiple things and that making us seems more unusual than we might want to it is really an underexplored topic.

    What do you do with that unruly hand that persists in slapping yourself in the head in a d’oh kind of statement without warning? It seems minor but in some settings it is not. People made a big fuss over my poor stage presence when that happened a single time. Although others said they found it a human admission of error when you are performing and screw up the goal is to make it seem like you didn’t and I knew that so adopted a more military pose throughout despite the strain of even standing because it seemed very much like a battle between my brain and body and the human that is me would lose either way. The energy expended to keep it compliant being energy I did not have or in failing the critiques that would roll through the months of a tiny thing forcing you to withdraw further as they cannot understand how hard you tried, at such cost.

  14. Great post gareeth. Don’t want to pick out any part of what you have said, as it seems to me that you’ve crawled all over the topic; making observations informed by living through what you choose to talk about.
    Would it be okay with you, if in discussing with others how we should be supporting particular young people and just why, I made use of chunks of what you here and elsewhere say.

  15. Yes as I sometimes ramble you can always ask for clarification. (take out the blog in my contact email so I actually get it because somehow despite being a nerd I managed to think I set that up to come to my mail client sigh)

    • Thanks for that permission gareeth. Rambling is good: it sees an addressed landscape covered with the senses; and not just viewed from normative pathways and with conventional mapping.

  16. generation emma is precisely what is needed and just in time. love sending b

  17. Ariane,

    If you and/or Emma think it will help, feel free to include the For Emma poem in your talk! 🙂

    Hoping it goes well, and looking forward to learning about what happens!

    🙂 tagAught

    • Aw… that is so thoughtful of you. Thank you!

      • *grins at you and Emma* Part of what the poem was written for was to try to communicate some of what happens with autistics who have that body/mind disconnect, or even those who are partially or non-verbal without the disconnect, to NTs. It can’t do its job if it doesn’t get out there! 😉

        (BTW – 22 reads on the Saturday, 62 on the Sunday.)

        😉 tagAught

  18. Yep the mind body disconnect thing is soooooo frustrating I can’t imagine not being able to talk at all for my whole life!!!!

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