Cages

My autism is just like a cage. I can look out and see the free people, but I stay stuck inside. I think the lion that paces in its cage gets used to its routine and knows the bars don’t open, but the lion doesn’t realize that other lions roam freely over vast savannahs, and that food doesn’t magically appear from nowhere.

It is different for me because my cage is like an invisible barrier. Bars, not of steel, but of impulsive behavior, stims, and limited speech have the same result though. I watch the people move around me and I am stuck behind my barriers. 

I watched my sister celebrate her birthday with her best friends this weekend. I couldn’t joke, talk, or join in. I told myself not to get lost in the jealousy because I envied her social pleasures – not that I listened to my own advice. In that way I am unlike the lion because I know what I can’t do yet. People overlook me because I am odd, or because I don’t speak, but I still watch, wishing one day to be liberated from my cage that traps me inside my own body.

As my book gets closer to publication, I will be sharing some essays written by people who know me to introduce me to people who do not. Today I am sharing what my friend, Cathy Gomez, wrote. Cathy was my aide in school for the past two years.

As Ido’s Behavior Interventionist for four years, I was initially able to see him communicate with his mom every time I did a home session. It was very fluid and natural. I also went through the process of training to communicate with Ido. It was very difficult at the beginning because we had to build trust and a relationship. Ido was so anxious, but that slowly lessened. We practiced every other day and each time we got a little better until we reached the point that he was able to fluently communicate his thoughts to me. I was able to see the progress as well as Ido’s frustration when I misunderstood him. Recently it has been so exciting to watch Ido type on his iPad. The iPad will allow Ido to become more and more independent in so many more ways.   

Ido’s greatest strength is that he is resilient. He wants to experience and do things, just like you or I, even if they are more difficult for him. It takes a lot of courage to be mainstreamed in all regular classes, knowing that he will be the only student like him. Ido’s greatest challenges are controlling his emotions and body. He has a more difficult time managing feelings because they tend to quickly escalate. However, even when emotions are high, Ido is great at staying reasonable and listening to logic.

Working with Ido for the past four years, particularly the past two, when I was with him throughout the school day, has affected me significantly. He changed everything I knew about autism and people with disabilities. I was supposed to be the educator, but he has taught me more than I could learn from a professional.  In college I learned that autistic people can’t have empathy, which is a ridiculous notion. I now view people with autism or other disabilities the way I would anyone else. Ido has shown me that he isn’t held back by his disability. He goes hiking, likes to joke around, wants to learn new things, and reads faster than I do.

Researching Genetic Roots of Autism

This article discusses some of the recent findings in autism research.

Guest blogger- Introduction to Ido

As my book gets closer to publication, I will be sharing some essays written by people who know me to introduce me to those who do not. The first is by Tami Barmache, lovely friend, and mother of a son with autism.

I remember meeting Ido’s mother, Tracy, at a mom’s night out. She was describing that while Ido was unable to speak, he was communicating by pointing to letters on a letter board. I had never heard of such a thing, was fascinated and wanted to learn more. I, too, had an autistic son who was not able to speak.

As the mother of a child who often cannot communicate his thoughts to me, watching Ido on the letter board, and now his iPad, has always been nothing but a pleasure- liberating. It is sometimes difficult to reconcile the differences between how Ido presents himself to the world, and the words and ideas that he spells out on the letter board or keyboard. There is something that tugs at you and says, “It just can’t be.” But then you see him, over and over again, spelling out his thoughts that are clearly his. It is not Ido’s job to prove himself to us. His challenge of remaining in control of his body to the best of his abilities is enough to face every day. We are the ones who have to find a way to overcome that incongruence, and kick through the barriers and limitations that skepticism creates.

Ido has many strengths, but the one that stands out for me is his perseverance. He says that his mom was relentless in her efforts to bring communication to his world. He was along on that ride, and was hungry to learn and communicate. He is strong, determined, and wise beyond his years.

I would imagine that Ido would say his greatest challenge was living a life without communication. Now he is able to convey his thoughts, feelings, struggles and successes. He has the ability to find his way through difficulties with the help of those who love and believe in him. He continues to face other challenges, such as gaining better control over his movements, and reaching other families and professionals.

So little is understood about autism in general, and specifically about individuals with limited communication.  Ido is very articulate, and has a vivid and clear way of describing his experience with this very difficult disability. With these insights, we can go beyond all of the technical terminology and the need to “fix” everyone. Ido can give us a window into the world that we, as parents, long to know so much more about. Professionals owe it to their students, clients, and patients to listen to what Ido has to say.

One day I was sitting under a beautiful tree in a park with Ido and his mom. I was frustrated and confused about what might be going on with my son. I always turn to Ido as my “go-to guy” in order to get a little bit of insight into my little guy’s world. After patiently answering some of my questions, Ido spelled out on his letter board: “Autism is a deep pit. Don’t give up.” I think of those words regularly and they give me strength. I will never give up. Thank you, Ido.

Relaxing Chefs

I love to unwind watching my favorite chefs. I have some tapes I've seen over and over. If I need true relaxation I watch Jacques Pepin, master chef, teaching techniques or recipes. I imagine all the dishes in my mind. I love the really knowledgeable, talented, ungimmicked chefs. They never pretend to be hilarious, or have personalities bigger than their  recipes. They are just knowledgeable, interested in what they do, and fun to watch.

My second favorite is Ming Tsai who fuses Asian and Western cuisine. Third is Italian chef, Lorenza DeMedici. Her recipes look so delicious I really would like to try them all. I like watching them and listening to them enthusiastically teach. It is the best method to relax.

My Book

I started writing my book when I was twelve. I finished when I was fifteen. Now I am sixteen and it is close to publication. It has been a dream of mine for four years. When I started it I had no idea I would write a book. I was sad when I was twelve. I needed an outlet. I started attending regular school then. I was the only non-verbal autistic guy in any of my classes, except the autism room. I was adjusting to a surreal experience. On the one hand I was the only kid in my regular classes who didn’t speak. On the other hand, I was the only kid in the autism class who could type, so I felt unique and a bit alone wherever I was.

I saw a need to help people understand autism better. There were so many misconceptions. Inside I felt the urgency to help change things for my autistic classmates who saw me communicating daily but could only watch. No one thought to try to teach them too. I think I was regarded as unique, a “savant” for communication, and that what I did was irrelevant to them. Many days I wept in that year when I was twelve out of frustration for them.

When I wrote I started to think how I could change things. It was a relief to ventilate my loneliness or anger but that was not going to help them. I started to think about my symptoms. I realized that so many theories about autism are based on external observation by experts who interpret our behavior according to their theories.

My entire education up until I entered regular school was built on these external observations and theories. Lots of them were completely wrong. The real problem was that the non-verbal recipients of this education were too locked in to correct anyone. Not being able to speak, gesture, or write limits your ability to show your true capacity to learn.

So I decided that maybe I was an expert in non-verbal autism because I could explain symptoms from my own experience. The result was that my explanations were different from what my old teachers told my parents, and different from what the expert advice books told them too. My expertise didn’t come from a Masters degree in psychology or a class in Applied Behavior Analysis. It came from my own struggle living with autism since I was born. When I heard experts explain why I did things the way I did, before I could type, communicate, and tell them my opinion, all I could do was write my book mentally and hope one day I could communicate and tell my story.

My book is nearly here at last. Just a short time more and it will be available on amazon.com. It is my story but it is also a window into severe autism. I hope it offers a key to help other severely autistic people out of their prisons too.

Getting Back to Normal

Recently I had a challenging episode of autism at its most intense level. I can't tell you how horrible it was to live in my body during that brief time, and horrible for people to be in my company too. I am sure I was helped by medication that stabilized my system. It is a lifesaver to have it, that's for sure. It frightened me to have so little control over my emotional regulatory system, but I am getting back to normal. I have to make it up to the people who were near me then because I'm not happy I behaved the way I did. The consequence of this is that I have to try getting more self control during times of stress and change.