Category Archives: autism education

Having More Say in Our Lives

My hope is that one day autistic people will be taught to communicate as young as possible. It certainly would be interesting to see how life would be if instead of drills and remedial lessons kids got lessons in age appropriate lessons, typing for communication and exercise specifically to awaken the mind/body connection. In my opinion, it is likely that the severe autism symptoms might be lessened because the urge to escape a frustrating reality will be less intense. One day I hope to put my ideas into a program for other people with autism. It will be the world’s first program for people with autism run by a person with autism.

Isn’t that pathetic?

How many autism organizations have people with autism consulting them or on their boards? If inclusion and diversity are important, why do so many autism experts fail to consult people who have autism? If I had an organization for blind people, I think consulting with people who are blind would be valuable. If I had an organization for people in wheelchairs, I think understanding their experiences would make treatment better suited to real needs. Must those of us with neurological issues be isolated from our own treatment options? My hope is to change this discriminatory practice.

Out of the Closet

 

Every day I meet new communicators. Not babies, but kids in elementary school, teens and young adults. Their lives had been limited in one way communication for way too many years. They listened but they had no way to answer. In any case, they heard people. Many of them heard their parents moan and groan and say comments like, “I don’t know how much intelligence is there. I don’t think he understands much.” They listened to their teachers say things like, “He isn’t aware of right from wrong. He isn’t aware of his surroundings. He is oppositional today.” They listened to ABA specialists tell them, “No, try again,” “No, try again,” “No, try again,” and “High five. Good job.” They heard a world that thought they were dumb. But the world in this case was wrong.

It isn’t a lack of intelligence to be able to think but to not be able to get your body to show it. It is being trapped. If I put your hands into baseball mitts and your tongue was trapped in gooey sludge and couldn’t move right and I bombarded you with questions, I think you would agree you would have a hard time showing that you had an intact mind, especially if those baseball mitt hands moved differently to your thoughts and wishes sometimes, and everyone assumed that people with sludge tongues and baseball mitt hands were intellectually low.

I know the way to escape this isolation is not to tell sludge tongues and baseball mitt hands to move in ways they can’t. It is to teach those hands to point to letters, to type with one finger and to communicate. There is now a steady tide of people, once thought to be dumb, once thought to need baby lessons and baby talk who are mastering communication on letter board and typing. And voila! Not dumb!

More than anything they find relief being recognized as intelligent. And some find even more; a mission, friendship, a life of meaning. But none will go back into the closet of silence.

I wonder if you are a parent, teacher or professional and you have seen a “dumb” kid prove himself smart, how do you react with other kids? How long should they wait for you?

Opening of my Remarks at CSUN Department of Special Education Commencement


It is a great honor to speak to future teachers in special education. I began my life in special education of the most restrictive sort. My early years had to be my hardest because I had no voice at all. I want to challenge you to be open to teaching those who may currently lack the ability to show their intelligence, but who still deserve the opportunity to learn.
  It is hard to be a teacher of kids who don’t communicate. The kids don’t have writing, or gestures, or speech, or facial expressions, but that doesn’t mean they can’t think. Lack of communication isn’t only a sign of cognitive delay.
I’ll give you an idea of my early life in my low, remedial autism class. My teacher was warm, but there was no instruction of any kind beyond the weather, 1+1, and ABC. Forever. I think it is pretty boring, don’t you? It is worse when people treat you like you’re not intelligent. Baby talk and high fives and “good jobs” instead of normal communication.
I think the idea that all non-verbal people with autism have receptive language processing delay is not accurate. I don’t have receptive language issues but I sat in this classroom for years, unable to show my true capacity.
It is important to not be overly confident or certain when you deal with people who can’t communicate. In fact, it is essential to have an open-mind, because more kids than you imagine are like me. How people escape this prison varies, but we must have the opportunity.
I feel that you, who are embarking on new careers in special education, need to know that a kid like me will be in your class – that is, a kid like me before letter board or iPad – who just can’t get his ideas out.  To be a great teacher you can’t be his prison guard. To be a great teacher you must find intelligence and give the hope of freedom in communication. To be a great teacher you must give a real education to those kids who may look stupid in the eyes of many, but who think, and feel, and pray every day for the chance to show who they are inside.

Challenge

Every day of my life I face a kind of moral dilemma. My autism makes self control very difficult. It takes more effort to sit still in class than to do the intellectual work. I have big personal goals for myself. I prefer to have a full life than a hidden, bored one in some remedial class like most other severely autistic people. It is my mission to help them get an education too. None of this is a dilemma. I am clear on my goals, but I struggle morally with my inner forces. My body is programmed in a different way than typical people. It has internal orders that differ from my mind’s intentions. My struggle to control myself is to be kind to others, thoughtful of the space of others and not disruptive in class. Each day I remind myself to do this because it is the right thing to do in spite of how hard it is to accomplish.

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.