Wednesday, May 18, 2011

My Speech at the Autism Society Conference

I am autistic, as you may have figured out by my restlessness and the obvious fact that someone else is reading my words. The question I have for you is if it surprises you that a non-verbal autistic person writes well?  This was mentioned a lot by professionals as I began communicating. People who thought of me as the “low-functioning” sort could not adapt to my intellectual abilities. This led to a rough time, to put it mildly. It’s a real problem. Truthfully, many theories made my early life challenging.

Theory One told my parents that I couldn’t understand speech, so I was talked to like this: “Go car”, “All  done”, “Hands quiet”, “Good job”, “no”, “Say hi”, “Go school”, and so on. I would have preferred if they had just spoken more normally.

Second Theory said that because I couldn’t understand speech, I needed super basic books. So, I was denied really interesting stories. Just last year an autism teacher I know gave me a cardboard toddler book as a gift. It is a comical notion because she was well aware that I was mainstreamed in my classes. Still, she thought, “Non-verbal autism/toddler”. I have to laugh it off, but what is she really implying? Is it this bias that really denies non-verbal people an exposure to interesting ideas? I read interesting, challenging books at home. This teacher thinks “Pokey the Lost Puppy” is better.

Theory Three was that because I didn’t show I understood, I didn’t. This meant that school was really a total bore. The teachers refused to teach interesting things because they knew we couldn’t understand. Like the teacher I just described, though well-meaning, they bored their students to a point of emotional withdrawal into stims or indifference. I think this is really sad.

 This leads me to Theory Four which says that there is an 80% chance that I am mentally retarded. In fact, a psychiatrist recently reminded me that most autistic people are mentally retarded. So I ask you this- is Stephen Hawking also mentally retarded? After all, he can’t speak, is locked internally, and needs constant support. Or is not speaking different than not thinking? 

There are a lot more theories, but I’ll stop here.

The problem was that these theories were not true for me at all, but when I was little I had no ability to show otherwise. My inability to get my body to do what I wanted was interpreted as a learning and thinking problem. Even as I emerged into communication, a majority of teachers and others I worked with were initially rigidly stuck in seeing my efforts as the imaginings of an over-zealous mom, rather than an intelligent, understanding non-verbal autistic boy finally finding a way to escape his prison.

So I was bitter for a long time. My journey was made harder by those who were in a position to help. They refused to see what was true. Good theories were better than reality. I felt really angry for several years because no one seemed even happy to help me grow. They were skeptical to the point of cruelty.

An example was when my first speech was published in a newsletter for The Friendship Circle three years ago. The only negative feedback came from a teacher of autistic kids who stated that in twenty-five years she had never met a non-verbal autistic person with such advanced thinking and writing skills, so therefore I couldn’t have such advanced thinking and writing skills. This way of thinking not only insulted me, but it meant that she was unable to see the potential in her own students. This needs to change, I think. 

Thanks to my persevering parents, we let go of the folks who thought like her because that was hindering my education. This led us to find people who were more open-minded. In the last four years I have had a much happier education. The School District has energetically supported me in mainstreaming since I began Middle School. They have provided me with my aide from an agency so that I can access my education.

The truth is, the changes set me free. Once people saw me in a new way, gave me opportunity and a chance to improve myself, and supported me- you can see what is possible. Next year I will go to a regular high school in all regular classes on a diploma track, and I will continue to do the same work as everyone else.
This is thanks first to Soma who taught me how to get my thoughts out in letters and typing, my physical fitness trainer who woke my sleeping body, and the many other professionals who help me achieve this.

Like all kids in middle school I have some great teachers and some lousy teachers. That’s OK. I’m not complaining. It’s a normal education, but only four years ago I was still in an autism class that showed me ABC movies every day, one plus one math, how to find stuff in play dough, and other thrilling lessons day after boring day.

To the credit of those who gave me the opportunity to learn at grade level, I am trying hard to do well. It can be lonely. Middle School is not a kind and compassionate age for any kid and I am the most different kid imaginable. I am far below the social pyramid. Still, I will be a successful man in my life. Disabled or not, I am determined to have a meaningful life.

The future is unknown to me like it is for everyone. I don’t know if I will have an improvement in my symptoms. I don’t know the path I will have in college or a career, but I know I will aim to achieve for myself some kind of job and intellectually stimulating work. I can’t stim my life away. Only I will need support to do this. I have a wonderful aide in school. She is helping me focus and communicate to the class. Without her I couldn’t access my education. She helps me function in society.
 
I will need smart, trained aides like her in college and after. The truth is I will always need someone, like Stephen Hawking does or Helen Keller did, but I will try to keep working on skills. I’m not sure where I will want to live. I see a lot of slackers still at home- ha ha, but I never, ever want to be in an institution or a place that patronizes me. I want to live as normally as I can.

Now, if my parents had not started to look at my illness in a new way, I might never have emerged from my prison. I would still be bored to death in a remedial autism class in high school, where my former classmates all are. I want to know if you think I am the only intact mind in all of them, or could it be that some of them are also intelligent and understand everything? I think the sad thing is, many will die and we will never know.

I used to come home from school in 6th grade, and I would weep so much for them. I was partially mainstreamed then and doing grade level work in the other subjects in the aut class as I adjusted to a longer and longer mainstreaming day. The other autistic students would watch me communicate and learn, though they were not doing either. 

Isn’t it possible to at least teach them some interesting lessons, even if the kid can’t communicate well yet, in the chance he is trapped internally, as I was? I wrote before that boring people to death is like denying them life, liberty, and the pursuit of happiness. 

I also think that autistic kids need more exercise than they get. Look at flabby, weak autistic kids who have poor body control. Don’t you think weights, coordination exercises, and cardio fitness would help? It did for me.

Communication is essential. To answer how,  will require a new way of working with autistic people. I feel non-verbal people will be heard from more and more. Will you be open to listening?

4 comments:

  1. wow. I love this kind of insight. I am determined to hear a similar story from my son.

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  2. Sounds like it went very well! You are a great source of encouragement to those of us who are parents of non verbal children. You can read my adventures in advocating for my son at www.lifehereinwonderland.blogspot.com.

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  3. You are more wellspoken then most scholars! It is because of you that society will start to see that non-verbal does not mean non-thinking. Thank you so much!

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  4. Hi Ido -

    I was at the conference last Wednesday, and your speech was by far my favorite part of the day. Thank you so much! You are such a beautiful writer, and more importantly, you are an incredible advocate -- for yourself, and for other people with autism. I especially appreciated that you asked the audience questions that really allowed them to think about non-verbal autism in a new way. It's a great way to open minds.

    My son, Dashiell, is part of the Moses-Aaron Cooperative, too. We look forward to seeing you at the upcoming MAC events.

    Thanks again,
    Clara

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