What is Autism?

I wrote the essay below several years ago when I was fourteen. It is published here for the first time. I hope to engage you in a dialogue about what autism is and how it is seen  by many people. It is my hope that we can change the way we understand autism.

What is Autism?

What is autism? It’s a long list of behaviors, or is it more? A diagnosis of autism is made only by looking at symptoms. Eye contact impairment, hand flapping or social delay only describe my outside actions, not what is wrong in my brain. Which part of my brain is the source of hand flapping? Why is my motor control erratic? Is my lack of speaking a sign of retardation or is it something else? (It’s something else I assure you). Is it a hint of what’s wrong that my hands aren’t coordinated or write legibly? How about my calm, flat face? Is it a sign of an empty shell or could it indicate a muscle/brain communication problem?
In a condition that is diagnosed solely on behavior, it would be nice if experts asked these questions, but mine never did. They looked at my outside deficits and concluded that my inside was equally impaired. I was assumed to not understand language, to not recognize my parents from a stranger, to not have a thought more advanced than a toddler no matter my chronological age. It was supposed that my brain could be molded in increments by drilling me in basic material like nouns or people in my family’s names or by telling me to jump or sit or touch my nose over and over. This was the educational model I grew up with. So, I am telling my experts what I couldn’t tell them when I was stuck in my silent prison for so many years; you were wrong. Worse, you were treating the wrong symptoms.
I didn’t need to be taught to understand. I understood everything as well as any other kid so I didn’t need flashcard pictures of trees for my brain to understand a tree. What I had was a body that needed to learn how to listen to my brain’s commands. I got answers wrong, not because I didn’t understand concepts, or was too retarded and limited, but because my hand and my body didn’t obey my brain consistently. I challenge those who study autism, and those who dictate our lives in school and home programs and in speech therapy and in OT and on and on, to imagine that the non-verbal autistic kid you see is not a mentally challenged person, however retarded he may appear, but is a thinking, interesting, understanding person whose body is a source of imprisonment. It is a new way of looking  at the illness, but I tell you, hard as it may be to see it this way, it is the true illness- not the observed symptoms.
My body is a source of frustration. It doesn’t respond when it needs to. It does mindless stims instead of purposeful action. It traps me in silence. It is a true puzzle. But despite this, my thoughts are true and clear and I can think and think and think. I believe that now that more and more non-verbal autistic people are learning to communicate by pointing to letters and by typing that we need to determine our own educational needs. It is time to end educations determined by experts who see only our strange outsides and refuse to inquire about our normal insides. It is time to force experts to open their eyes to a thing called the truth. It’s time because the devastating illness called autism can’t be cured as long as experts don’t see it in the accurate way.
I want a cure and I want communication now for all those still trapped in silence. This is why I wrote my book (to be published soon) and it is my dream that it may help my friends and so many other autistic people and their families to be liberated too. In my essays I explain autism from the inside out. I challenge widely accepted theories and beliefs about autistic people and I explain where they are incorrect. I describe my early education so people can learn how it felt to be on the receiving end of this kind of instruction, and I will share my emergence into communication and hope. This is my personal story, but I speak for many other autistic people too.
Thank you for listening to a silent boy no more.

4 responses to “What is Autism?

  1. Hi – first – thank you for your writing – it is a gift – not just because you are an eloquent writer but it offers an insight I appreciate. I am a parent of a son diagnosed with autism. He is 13. As you can imagine, parents reading your blog have a lot of questions but I will try to keep mine focused as best I can. Not even sure how to ask the question. But it seems your language skills were quite developed and you found a way to express thoughts? I want to offer my son a way to communicate and and I am reading all I can. Apologies if this just isn’t clear. But anything you can say about how it was introduced? I know every situation is very different – but I do want to learn. Understand if you can’t repsond to questions – even so – thank you again for writing.

  2. Hi Rachel,
    I think my book, which will be published very soon, will answer in detail a lot of your questions. My most important teacher regarding communication was Soma M. You can see what she does at this link, http://www.halo-soma.org. She taught me how to communicate independently by pointing to letters on a letterboard and also by typing. Now I also use an iPad.
    I did have language before working with her, but it was stuck inside me. It is a process to learn how to get it out.
    Don’t worry about asking questions.
    Good luck!

  3. Hi Ido –

    Thank you so much for writing back. I look forward to reading your book and learning about the emergence of communication in your life and perhaps some of the “nuts and bolts” of the process that took place. I am prepared for anything that happens as we explore things with my son. Reading your essays has just been like a window opening.

    Again, I appreciate your writing and look forward to learning more.


  4. Hi – and last thing – I took a couple pictures about delving into the world of assistive communication for my son, Mike. Maybe it would amuse you (or you would find it utterly ridiculous). Either way….


Leave a Reply

Your email address will not be published. Required fields are marked *