Saying One Thing, Meaning Another

First – here is the video of Emma’s and my presentation at the ICare4Autism Conference on July 2nd in New York City – “My Body Does Not Obey My Mind”.

Emma ended our presentation by singing one of her favorite songs, You’ll never see me again.  We uploaded this separately and changed it from “public” to  “unlisted” as someone has already given her singing performance a “thumbs down”.  As with anything that is “public” on the internet, one can expect to get those who are so troubled and filled with self-loathing they cannot control their wish to hurt others.

We may make a new video that includes both the presentation and her singing. At which point we will remove this video of just her singing performance so that only those who watch the full presentation will be able to watch her singing at the end, but have not done so yet.  In the meantime here it is, though this link may only work until we’ve made the new video.

As Richard edited the video of our presentation I became uncomfortably aware of how, in my desire to amplify Emma’s voice, I tried to keep her from applauding and kept trying to read her words over the applause.  This presentation was the first full length presentation we’ve done together, so there were a couple of things I will be sure not to repeat next time.  In addition to my issues, the font size needed to be about 30 times larger for such a big room and the activated voice needed to be miked and next time you can be sure I will be applauding Emma right along with the audience, waiting until the applause died down before attempting to read her words.

This morning I was reminded of how Emma, when asked, “How old are you?”  will, without hesitation and in a matter-of-fact voice, say, “Nine.”  If I give her the keyboard she will then type, “I am 12.”  When I asked her to talk about what it was like to say something, knowing it wasn’t “correct.”  She wrote, “Hearing myself say words that cause confused reactions, solidifying doubt, makes people befuddled and causes me anxiety.”

I asked Emma if she was willing to say more.  She wrote, “The words are not friendly when they march purposefully from my mouth, ignoring my brain’s direct orders, like obstinate and unruly toddlers defying all.  Words pouring forth like water after a dam break, do not pay attention to me.  I am so used to it I no longer fight.  I dread the smiling talkers who insist on spoken language as proof of being and serious thought.  Humor and a reminder to not take themselves so seriously is my loving suggestion for all.”

I asked Emma why she chose this image for today's blog post.  She wrote, "I was so happy riding the horse and this post makes me happy too!"

I asked Emma why she chose this image for today’s blog post. She wrote, “I was so happy riding the horse and this post makes me happy too!”

 

24 responses to “Saying One Thing, Meaning Another

  1. That smile says it all. Joy. Pure joy. At being heard!
    🙂

  2. Mary O'Dea sare

    “Humor and a reminder to not take themselves so seriously is my loving suggestion for all”. /// I REALLY like Emma’s suggestion !

  3. It was brave to make that presentation in that audience. I was at that conference the first day and just – wow. So impressed with both of you.

    One suggestion for the future: When you are in a room full of BCBAs, if an autistic person demonstrates a skill, they are going to assume that the skill came from ABA therapy. They’re likely to even take it as evidence that intense ABA therapy as early as possible is really important.

    It might be worth explicitly pointing out that this was *not* done through ABA, and that ABA was in fact anti-helpful.

  4. I treasure the insight of Emma’s last paragraph!

  5. That was a great presentation and Emma’s singing was just lovely.

  6. love, love this.. thank you

  7. usethebrainsgodgiveyou

    Wow…loved the ending, what both of you had to say. Magnificent spokespeople for the humanization of “treatment” for people with autism.

  8. Darn I went in to the singing video and was going to be brave, but the tears just flow with so much joy in my heart for Emma. So beautiful and so amazing the presentation. Jumping for joy for you both!! ❤ ❤ 🙂 🙂

  9. usethebrainsgodgiveyou

    One thing I remember, when I taught at an ABA school…out of curiosity more than anything (I was bad at it…), There was a kid whose testing put him,adaptively at age 18 months (Vineland Adaptive Behavior Scale), but whose understanding was that of an 11 year old. That always puzzled me. It seems to go along with what you are saying here. I wonder if there is any scientific curiosity about this discrepancy?

    • There appears to be an appalling LACK of scientific curiosity when it comes to all of this. At least this is what I’ve found.
      In addition, no one, not one single person ever suggested, brought up or even intimated that there was anything remotely like this going on. All those developmental pediatricians, the neurologists, the neuroscientists, the speech pathologists, the occupational therapists, not a one ever mentioned that what she said might not align with what she thought. I find that fact remarkable. Stunning, even.
      Now there are people talking about this, and most of them appear to be speech pathologists… but then I’m largely out of that loop as we do not take Emma to any “Autism experts” any longer.
      I’d love to hear from others regarding this. I’d love to know if they’ve had a similar experiences.
      PS The Vineland Adaptive Behavior Scale is absurdly inaccurate gauge of an Autistic person. I used to write in the margins long detailed descriptions only to be told when I did so, the scorer would simply mark my answer as NA.

      • usethebrainsgodgiveyou

        It makes me happy to hear you say that…I have 2 friends from high school (40 years ago) who are speech paths. I hope they see the facebook post of this blogpost. I’d love for them to be aware.
        You two are doing spectacular work here, changing the world, if you could find the ears to listen. I’ve given up on “experts”, too. The best thing we ever did was homeschool. You wouldn’t believe the people who are carrying my son on to larger possibilities at age 20…people who made it, BIG, and come back to help, who were no different from him in school, atypical. Their hearts, not their brains (egos), are in it. I would have never dreamed it would be like this…

  10. Michelle Jones

    It was a fantastic presentation! I watched it with KA and she was all smiles. She especially loved you singing Emma! KA loves to sing herself. I believe you are inspiring her more everyday and more importantly, she is realizing that she is not alone. Thank you both!

  11. lilytigerheart

    Absolutely wonderful presentation! Loved it! I loved listening to Emma sing even more, though! So beautiful and sweet!

  12. Loved all of this, have been following it with awe, go Emma (and Ariane!)

  13. Ariane~ which app do you have on your ipad that does the voice for Emma? 🙂

  14. You two were amazing!!!!! I wish I could’ve been there!

    What an incredibly enlightening presentation! Em, your abundant humor and angelic singing were icing on the cupcake! I am tremendously proud of and grateful for all of your altruistic advocacy and activism. I’ve been adrift in stormy darkness for so many years, failing to see all the wonders gracefully swimming all around of me. Your compositions, admirably orchestrated letter by letter, have composed the turbulent waves of obscurity and illuminated the ausome world right before my very eyes. I still feel ashamed knowing my previous underestimations were keeping me from seeing the light sooner and I still feel absolutely awful for committing such treachery against the neurodiverse community. I, more than others, should have known better. Fortunately, your willingness to forgive, your poetic guidance, and all of the joy you continue to bring to my life help me refocus my efforts and move forward. Thank you for being you! You continue to inspire me to be more and do more. You are my Polaris and patron saint of Ausomeness!

    This presentation is exactly the kind of stuff that everyone (especially parents of autistic kids and anyone working with autistic kids) should be directed toward sooner rather than later (especially before A$ gets a hold of them). Price of admission: 1 open ear + 1 open mind + 1 open heart.

    ((((Em)))) ((((Ariane)))) With endless love and admiration for you both.

    • Aw… hope you guys are feeling better, Joe. Sending all of you love.

      You know how forgiving, compassionate and kind Emma is to all of us and for all of our countless mistakes. We kind of owe it to her to take her lead, forgive ourselves and work that much harder to see that others don’t make similar mistakes!

      Sending you love and Emma asks, “Kingsberg water park with Joe?”

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