Thursday, November 3, 2011

My Speech at the Vista del Mar Autism Conference

I am honored to speak here today. I know some of you are professionals working in autism, and some of you are parents, and even a few of us here actually have autism. So I will represent the point-of-view of someone who has unfortunately lived with autism since the first moment of life.

It aint easy.

It’s hard on parents and I see the sadness and struggle of them all the time. It’s a true challenge to have a child who can’t do normal tasks, does odd self-stimulatory behavior in all the worst moments, can’t communicate in words, signs, or even gesture their deeper thoughts, and needs constant supervision. So I have empathy for what parents go through. The worst for parents is never knowing if your non-verbal child is understanding and thinking at a normal level. It leaves parents talking simply- as they have been advised- to help their child with basic concepts. The child is never fully communicating in sign, or Pecs, or even speech, so it is a really hard situation for families.

The autistic person has a different challenge. Recently the news was about an Israeli soldier held prisoner in a dungeon in Gaza for nearly six long years with no communication with the outside world at all. I thought about how awful it would be to be a captive cut off from life and sun and kindness with no certainty of surviving or being freed.

Now, autism isn’t a matter of life or death, but it is a prison that won’t let us talk to the outside world and we have no certainty of ever being freed. I brought up the analogy because I think people can imagine more easily being a captive of cruel terrorists than of being a captive of your own body. So, you need to try to imagine my situation as a young non-verbal boy with no way to express my ideas and see that it was like a nightmare. Not only was my mind fully present and understanding everything, but I read fluently. I thought of retorts, jokes and comments all day long in my head. Only no one else knew.

So, I was talked to like a toddler, not given a real education, and kept bored and sad. This changed when I was finally taught how to get my thoughts out. The liberation was as remarkable as the freeing of this poor captive.

It’s true that I stay tied to autism still. It is with me every moment of my life. It is not a liberation from autism to be able to communicate or get an education. However, it is a liberation from its isolation. My typing and my pointing to letters have enabled me to be a free soul.

I go to a regular high school all day. I go to regular classes too and I do regular homework, and so on. I may challenge the teachers because I behave oddly at times, though I am actually working super hard, but I learn, get good grades, and intend to graduate, go to college, and live a kind of, sort of, normal life. Kind of, sort of, because autism is a barrier to normal anything.

Being autistic is a major challenge. It is the biggest hurdle because it is pervasive, very misunderstood, and incorrectly worked with in too many cases.

When I was twelve I started writing about living with autism. Soon I hope my essays will be available to you in a book that will explain a lot of the behaviors and inner experiences of the person with autism who can’t communicate.

If you check out my blog, www.idoinautismland.com, or follow me on twitter or facebook, you will be alerted to when it is ready to purchase. My goal is to help you parents connect to your children in real communication, and to help professionals understand the real experiences of your clients, and to burst open the prison door of my fellow travelers in Autismland.

Thank you for your time today.

3 comments:

  1. Ido, you are one amazing human being! It is such an honor to know you and be your friend. Good luck in high-school and I hope to see you soon.

    Your friend,

    Yehudis Silverman

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  2. I just stumbled upon your blog. I am in awe of you. I am a mom to 5 children. My son who just turned 5 has Autism. He was diagnosed a bit over 2 years ago,though I knew something wasn't right beforehand. I have often felt that he does indeed understand much more than it seems to all of us. He is actually fairly verbal though a lot of his language is more scripts etc. He wasn't verbal at diagnosis though. The hardest thing as his mother is knowing everything is a struggle for him. The older he gets the more obvious it becomes. I always wonder if I am doing the "right things". I am his safety net and when he cries to me " no school. Stay home with you. It's hard " it literally eats me up inside. I just had to fight our school district to have him placed appropriately and I am hopeful he will be in a typical classroom within a few years. Thank you for opening up your thoughts to the world. It really means a lot to a mom like me.

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  3. This is one of my favorite posts from you, Ido. I talk to my NV son and tell him about you. I tell him that I know he has words to say and thoughts to express, but he can't get them out. I tell him I love him and that someday he will find a way to communicate better his ideas and thoughts. I hug and squeeze him alot. I chant to him repeatedly , "you have something to say, but you can't get it out". It seems to calm him down when he is acting like he needs to "crawl out of his own skin" so to say.

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