Category Archives: Communication

Struggling Against Attitude

Posted on November 17, 2011 | 7 comments

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.

7 Comments

Posted in adversity, attitude, autism, autism education, Communication

Me, Nick, Sydney and Emma

Posted on August 2, 2011 | 3 comments

I have some friends I love to see. Unfortunately I don’t live near them.I have a long drive of an hour and a half once a month to see them but I feel it’s worth it. Each of us is living in Autismland but we can all communicate in typing and letter boards. Some use i-pads. I use a dynawrite or a letter board. Each of us is living the best we can in spite of our challenges.

We all have very loving families who noticed the potential in us in spite of expert advice that preferred to see us as “low functioning”. Thanks to our parents’ hard work we are free in life. I notice we all have very persistent, positive, and determined moms who didn’t want to give in to a label that told them it was hopeless. The result is that we are their kids in all ways like any other in spite of autism. In this group I don’t have to work on acting normal. I can be autistic with people who are friends, and friends with lovely, intelligent people who are autistic.

3 Comments

Posted in autism, Communication, family support, friends, social behavior

The King’s Speech

Posted on May 2, 2011 | 1 comment
I watched the movie, The King’s Speech this weekend. I could so relate to his internal anxiety. Obviously my speech is much worse than a stammer. If I stammered I’d be happy compared to what I do now, but that’s a relative issue. I could relate to his fear of speaking in public, though, and I had other similarities. OK, I’m not a British king, but other than that, let’s see. First, he had a series of experts that couldn’t help. In the end, the person who helped him was insightful and not a trained speech therapist. This is what happened to me. I saw a lot of so-called wonderful experts who helped very little. Then I saw Soma who was not an autism specialist. I think she is an engineer or something like that, but she is insightful. I began to have real communication at last.
I saw that Bertie, the king, could only talk well with trusted people. So true. I hate using my letter board or computer if I do not fully trust someone. Trust is like an essential tool to fight anxiety in communication. Stammering is an anxiety issue, but the king trusted Logue, the speech teacher, so he could trust himself. I saw him freeze with his brother and dad. They angered me because they humiliated him and treated him badly because he stammered. Somehow Logue realized Bertie needed to be heard and was blocked by nervousness. What unlocked normal communication was realizing someone listened.
You know, I remember the first time I saw Soma. She saw through the resistance and taught to my mind. It gave me a new perspective on life.
The movie was interesting. I’d recommend it.

1 Comment

Posted in anxiety, autism, Communication, Soma, The King's Speech

The Speech I Made to the Parents Yesterday

Posted on April 17, 2011 | 2 comments

I’m happy to speak to you today.
I am here to represent the point of view of people with autism who don’t speak. Some of you might be parents of non-verbal people like me and stopped believing it was possible that your child could ever learn communication or even to understand.
I don’t doubt that experts probably told you that it was false hope to imagine that your child could talk. Well, I don’t talk but I still go to regular middle school in regular classes and do regular homework and schoolwork, and I get good grades of A’s and B’s. I tell you this, not to brag, but to give you hope.
I don’t need to talk with my mouth. It’s too hard. But I’m able to communicate thanks to my letter board and dynawrite. It was a long journey to get to here from where I started. I had years of silence and rotten frustration. I was totally not able to show people I understood, so I suffered inside while my specialists chose wrong for me.
It was the worst, and I know it’s kind of equally challenging for parents too.
But here’s my hope. I went from so bored in school in remedial education when I couldn’t communicate to a diploma path in high school next year. How, is the story of the potential in your kids.
Teach them interesting things. Read them age appropriate books. Talk normally to them. Not, “go car”, “say hi”, “good job”. I believe many autistic people are understanding inside and can’t show it. To be talked to like a baby is so frustrating.
The letter board was my freedom. This is it.
It takes a while to learn how to use it, but it’s worth it.
Communication is the most important thing.
Autism is a deep pit. Don’t give up.

2 Comments

Posted in autism, Communication

THE Greatest Disabled Hero (In My Opinion)

Posted on April 6, 2011 | Leave a comment

Moses was speech impaired. Did you know that? I know Charlton Heston had no problem speaking, but religious scholars say that Moses had a burn on his tongue and was a stutterer and not clear in speaking. Despite this he was picked by God to liberate the Hebrew slaves from bondage in Egypt. 
Not bad.

Leave a comment

Posted in Communication, Moses

One Wish

Posted on March 1, 2011 | 5 comments
I think if I had one wish it would be to help the trapped people in autism-jail open their prison cells to freedom.
What is freedom?
It is communication. It is education. It is exposure to normal education and books and conversation. If I halfway made an effort to be normal, I’d still be autistic. I have a neurological illness that isn’t cured by hope and good fortune. If you meet me halfway, I can access the world as a person with autism.
I listened to a woman who thought I belonged to the rare group of autistic who can think. I got to laugh inside, and laugh sorrowfully too. I may be communicating now, but not always. Until my mom and others opened me to the ability, I was trapped internally. If this early part of my life taught me anything, it is that I have to free those who remain trapped.
If she had met me when I was young and had no ability to get out my thoughts, I know that she would not have believed that intelligence lay behind my symptoms. If I had never been taught how to use a letter board I too would be the moron she imagines in others.
I’m sorry if I seem harsh but I am tired of well-meaning but blind people. Other autistic people die inside daily because they believe they will never get free or have communication. If the people that help them can’t see the potential inside them, no one works on their freedom from autism-jail.

Intelligence is there. It’s trapped. It’s stuck- buried beneath neurological messages that don’t send out.

Don’t assume the only smart non-verbal person with autism is me or others who type or point. We are living proof that   intelligence is there if our jail cells are given a route to communication and freedom.

5 Comments

Posted in Communication, intelligence, letter board