Category Archives: autism education

My Book

When I was twelve I did a thing very important to me. I began writing about autism. Nearly every day when I came home from school I wrote. It was like a fire in me. I felt so lost in a way because I lived a life of isolation since I was so limited in my ability to make friends. I felt really misunderstood in my dealings with professionals, and I was the only severely autistic kid in my general education classes. I wrote to help me deal with a miserably hard disability. I wrote to educate about incorrect but widely believed ideas about autism. I wrote about my weird early years in an intense home program that really missed the boat and left me terribly frustrated. I wrote about my journey to communication from total silence, and I wrote to help me accept myself. I wrote on and off for three years. My mom felt my book was really important because it exposed the inner truth about autism. It took my dad longer to adjust to the idea of me being published because I would be scrutinized by everybody and he was wary of biased reactions- something I had encountered so much in my life. After lots of delays, we will finally have a book later this spring and I won’t be alone in my message. I think at least three other books by non-verbal autistic people will be published too. It is a new trend. I am happy I will be part of it. I will keep you posted when I have more news.

Onward Upward

Well, I am starting a new high school next semester. It is good to be free of my old school and entering a new one. I feel welcome and accepted. This is a wonderful change. Why some schools are friendly and others not is a subject good to explore another day. I am hopeful now that I can enjoy high school and that I will succeed there. Hope is great because I felt hopeless in my last school that I could enjoy it, be relaxed, and feel supported. It is a good lesson because some systems can’t be fought. The system is closed and you can’t change it. The only solution is to get out and even that wasn’t easy. It is a start to my new year in 2012 that I will go to a warmer and far more welcoming school. I will need to adjust to all new routines, classes, schedule, and environment, but I’m sure I will and I’m really looking forward to it.

Starting Over

I went to check out another high school today. They had Open House. I think many of you have read about how difficult my high school has been. It started rough, in part because I had an unprepared aide who was not ready to work with a grown kid. I am tall and strong, so I am not easy like a small elementary school kid. I was also overwhelmed by the size of the school and the number of students. It was incredible how many came out of the rooms when the bell rang. Finally, it was pretty clear to me the school was worried about my early behavior when I was overwhelmed. It was unfortunate because I did great in middle school. Not perfect, but better each year.

In high school I started improving steadily too but I think my less than stellar start has affected the ability of some folks to see my improvement. Still, I get excellent grades and I try very hard to excel. Now I have my old, trusty, terrific aide, Cathy, all year (yay), and a wonderful new aide in training for next year. I was at the end of my rope a month ago. I came home from school in a sort of panic. I pleaded to find me another school because I felt unwelcome. My mom began looking and found some possibilities but I wasn’t eligible for different reasons, usually residence issues. She found one possibility I visited today but we don’t know if I can transfer mid-year. Oh wow- it had a horse and goats and sheep, but it also had friendly people and a warm and welcoming administrator. Cross your fingers for me.

I decided to overlook the fact that I feel unwelcome now in my current school. This has helped me relax and I can see I feel calmer. It also helps me mature. This challenge of my high school made me grow and get tougher but I am still eager to move on to a smaller, warmer school.

Struggling Against Attitude

I live a surreal life in Autismland. I work so hard and I struggle all day to manage daily in school. Still, I struggle to be welcomed. I push against the door to be let in to have a decent education, but I get in and find I’m still stuck outside. What do I mean? I mean it’s not easy to struggle against attitude. Maybe I need to develop a sense of humor about it. Maybe I’m too sensitive for my own good.

I gave a talk yesterday. A lot of my writings were read. In the Question and Answers at the end a nice lady asked if I really understood everything. Then after she was told yes, she incredulously repeated, “Everything?” The funny thing is, if I write smart ideas I must understand English, right? In the moment I felt mad, I must admit, but now I don’t. I believe she expressed the doubt of many, actually, especially if she is a special educator or something like that. I’m sure I don’t fit the model that people expect for a limited-verbal, hand-flapping oddball. Ha ha. I laugh at myself too.

I have to assume that I kind of challenge assumptions about autistic people. I have to prove to people over and over that I really am communicating. They stand next to me, or behind me, or near me, and watch me type or point on the letter board. They find I move my own arm, react to their questions, and communicate for real. How many people have I done this for? OMG, it seems like thousands, but it is only dozens and dozens and dozens and dozens…

They are professionals, and parents, and friends of my parents, and I have to prove myself to everyone so they know I am smart. I get it and I accept it. Maybe I need to get a movie of me typing we can put it on an i-phone and show them. Then I won’t have to be observed like that. On the other hand, it is fun to see their skepticism vanish. I have sat with medical doctors, neuro-scientists, psychologists, and skeptics of all kinds. After a few minutes they stop doubting and I can relax. I suppose I need to laugh, but it’s the people who assume I don’t communicate or don’t do my own work that bug me most of all.
OK, that’s my rant for today.

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.

My Friend in Middle School

I was thinking about my friend who is autistic and starting middle school. He is a smart guy but he isn’t educated in a scholastic sense because he was kept for years in an autism classroom. Now in middle school he is starting to go to a regular class for one period. He is overwhelmed and scared and being watched. It is hard to be scared and overwhelmed and scrutinized. In his case he suffers more because he can’t communicate with his one-on-one. It’s a struggle to do the work if you can’t communicate and you’ve never sat through a regular class before.

But in spite of this, he is smart and he deserves a chance to learn. He isn’t learning anything in his autism class. I mean, if you couldn’t talk and I stuck you in a pre-school class year after year, how would you like it? It’s not a matter of he needs to be normal before he can start to be taught, because he will wait forever. He needs to learn how to learn. No one showed him this lecture format before. Imagine moving from toddler class to middle school with no preparation. Then the school is inferring that he really isn’t ready.

It was my experience too, and to some extent, it still is. I am over the days of proving I am smart, but not over the days of scrutiny. To be autistic means you have to prove yourself over and over. I sometimes imagine how my scrutinizers would like me scrutinizing them. I think we who work to emerge from autism need to get a little more empathy and a lot less judgments. The disabled can do a lot but we fight not only our disability, we fight prejudice, of sorts. I accept it. I’m used to it, but it’s new for this boy. I wish him and his wonderful mom strength and perseverance.

Starting High School

Next week I go to a huge high school. It is intimidating. Still, I am so thrilled to have the chance to go. I think often how lucky I am to have escaped autism education. It was well-meaning, so I feel no anger about bad intentions. But however good the intentions, the result was stagnation in insufferable boredom.  How many times must I do my schedule or read the same stupid words over and over? The days were repetitive. I learned nothing academic, so the journey I have been on for four years is the beginning of the true education of Ido.
I understand the school mostly has to accept a disabled kid by law. Not to complain, but my mom looked into a private high school to see if they would be interested in having me, but they were totally determined to not have me (but they never said it was because of autism). So, public school is a welcome doorway for me to have a chance to learn.  I worked very hard to get to the point to go to regular high school. I realize I am at a crossroad in my life. I intend to work hard and earn this opportunity. 
I am not under any illusions that the school is thrilled to have a seriously disabled student. I am a challenge. I am expensive because I need an aide. But I am a student who is pioneering opportunities for the disabled too. I am doing the same work as all the other kids so I don’t expect charity or pity, only I hope to get tolerance, sensitivity to my situation, and fair treatment. The doors open on Monday, and I’ll try my best.

Thanks to My Middle School

The middle school I just graduated from was big. The procession in the graduation went on for about twenty minutes. It was the longest parade of students in suits or fancy dresses and high heels. The graduation meant a lot to me because I earned it. I thought about my journey to this point. I think I need to say thanks to the school.

In my education, I never had the chance to show my knowledge until middle school. It was the first school that accepted me as a student who could learn at grade level. They accepted me as a person who was different but not who needed to be kept from regular education. Each year got better and quickly became a full day of mainstreaming. When  I started I wasn’t sure I could do it. Now I know I can. I am starting high school with the knowledge that I did well in middle school.

My teachers were taking on a new kind of student. Classes were humongous. I got minimal individual attention. Classes were interesting or boring, like any other student’s experience. It was normal boring, not a mind numbing denial of education boring. I am grateful to my middle school for that. Some teachers understood me and my situation better than others. Some were not very insightful at all. Some were open-minded and some were probably annoyed to have a disabled student crowding their classroom with an aide. The truth is, they all gave me a chance. Some people really never have this opportunity. It was hard, but a great thing to learn and be part of regular classes.

I think some people were amazingly helpful so I want to to acknowledge them. First, I want to give special thanks to my wonderful aide, Cathy, for the patience of a saint, her lovely disposition, reliability, and wonderful communication skills. I also want to thank Mr. Miller who was always the problem solver and support I needed in administration. Last,  thanks to Mrs. Johnston who in a short time became a huge help to me in my journey toward high school.  The rest of the teachers deserve recognition for putting up with me. Ha Ha. 🙂

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?