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…