The Benefit of the Doubt

Sometimes I read about other people and their challenges. It often gives me hope. This is a quote from Gabrielle Giffords new book about her brain trauma and rehabilitation.

“In the first weeks after Gabby was injured, she couldn’t say anything at all, which left her terribly scared. She felt trapped inside herself. By mid-February, Gabby had begun formulating words, but they were often delivered haltingly or incorrectly. Her speech therapist handed her a photo of a chair and asked her what she was looking at.
“Spoon,” Gabby said. “Spoon.”
When shown a lamp, Gabby said, “cheeseburger.”
She also got stuck on random words. No matter what she meant to say, the same word, “chicken,” often came out in a burst: “Chicken, chicken, chicken.”
For Gabby it was almost unbearably frustrating.”

Oh, does this ever sound familiar. It is interesting how Gabrielle Giffords got the benefit of the doubt. Pretty soon she got better too, so she is extremely fortunate. In autism we kind of live there all our lives. Each neurological challenge is different, but autism does not get the benefit of the doubt. People assume we get the word wrong because we don’t know the word. It isn’t true in my case. Is it possible in others? What do you think? Do autistic people deserve the benefit of the doubt too?

Welcome

It is so nice to see so many new readers having a look at my blog. I want to thank Autism Speaks for linking to my last essay. You can also check out my facebook page (idoinautismland) and give it a "like", and I am also on twitter. I don't have much to say today other than welcome to my blog, and I will post soon when I have more time.

Thoughts for Thanksgiving

It is almost Thanksgiving. Thanksgiving is one of my favorite holidays. Each year we have a turkey feast with a large gathering of relatives. Sometimes the weather is mild and we eat outside. This year it is already the wettest Thanksgiving season I can remember. I seasonally enjoy all my holidays. They get so associated with weather and seasonal foods, if I moved to Alaska it would be weird to have a snowy holiday, or in Hawaii, a beachy one.

The thing is, being the serious sort I am, I like to think about the reason for a holiday. In the case of Thanksgiving, it is to stop and remember that we have good luck in the fact that we live in a beautiful and free land. Often people forget to notice good fortune. They notice bad right away because they assume good fortune is the norm in life. It’s not. In fact, few people are as lucky as we are with no hungry nights, a full pantry, school, choices in life, and the freedom to have a say in and even dispute our leaders. There are a lot of people who enjoy none of that, so I try not to have a too casual appreciation of my luck in that.

To have autism in this land is even luckier. I am fully aware of how my life would have been if I had been born as strange as I am, in desperate poverty in a place that stigmatized the disabled as cursed. My shame would be to be hidden from sight, or tied to a rope, or institutionalized. In many places this occurs today. While I struggle mostly to help autistic people get a better life, I hope that those who live in these harsh conditions will have better lives too.

Wishing you all a wonderful and grateful Thanksgiving.

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.

New Ideas

I read this article today in the Wall Street Journal. It describes how the usual pattern for reacting to new ideas is to dismiss them. Earning credibility is hard when systems have invested in maintaining the status quo. The article cites resistance to plate tectonics, new medical ideas, and some other theories later proven to be right, and it also mentions that many new ideas are also wrong.

Sometimes well-meaning people follow a wrong theory for years. It is always interesting when the theory is disproved. All those lives that were negatively affected by the theory are now told, "Oops".With ulcers my grandfather had part of his stomach surgically removed. Now they know it's a virus. Oops. Weird theories in child-rearing, and education, and mental health are now disproved and some theories popular now will be disproved in the future, but we can't know ahead of time which is wacky, which works, and mostly how to stand up to the naysayers.

In the fifties people were sure autism was a sign of emotional neglect on the part of a cold "refrigerator" mother. This idea was miserable for mothers and autistic kids. I suspect that when new theories that viewed autism as a neurological illness came out that many mental health therapists who were making a living on treating autism with emotionally-focused therapy resisted the new ideas because they were invested in their theory.I think it is still the same today with the popular theories and new ways of seeing autism, but I think it is starting to change gradually, and I am so grateful to Soma for being one of the intellectual heretics who is right.

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.