The Best of thAutcast 2011: Landon's Favorites
I must admit that it is a relief to be almost done with my wrap-up of 2011. For the last week I have focused on the work I do for this blog in aggregating news, videos, and writing. Before going on to 2012, I also want to highlight the writing I did this year that was most important to me.
"I'm Landon Bryce, and I approve these messages."
Like Mathew, I rock back and forth. This is the stim that is most likely to come out in front of other people. In private, I also flap my hands and play with spit in my mouth. These things, I try not to do even in front of the people who are closest to me, because one is so stereotypically autistic that it makes me embarrassed and the other is just sort of gross.
But the rocking I think people should be able to deal with. I can't tell you, though, how many times some well-meaning teacher colleague has actually put her hand on me to stop me from rocking while I am talking to her (men are less likely to do this). This makes me furious, because I think it is rude to touch someone without invitation, whereas, while rocking may be distracting, there's nothing wrong with it.
It's especially destructive beause I stim when I am upset or when I am concentrating hard on something. And I find it very upsetting to be touched by people who are not my family or dearest friends. So I am either already upset, and then made much worse by being touched, or I have gotten lost in an idea and then pulled roughly out of it. And the condescending smirk that usually accompanies that gentle hand on the shoulder feels like mockery to me. I don't mind if someone asks me nicely to stop rocking because they are distracted by it, but please don't touch someone with autism to stop them from stimming unless you know them extremely well.
The structure of the film makes it seem like Larry and Tracy have very little to say, other than that they are intelligent and people should listen to them. When all people do in a movie is talk, it's crucial that at some point they get beyond the introductions. It's important that sometimes they disagree-- something that never really happens in the course of Wretches and Jabberers.
We see some of the difficulties Larry and Tracy have with unusual food and customs like removing shoes at a temple. We see Tracy's frustration when he cannot bring his words together when visiting a legislator in his office, and we learn that he does not have a permanent home. But a movie about talking needs to include some conflict of ideas, and nobody in this movie says anything controversial enough to cause any conflict.
This is probably because the method of communication they use is itself extremely controversial. Called just "typing" here, it's known as facilitated communication. The concern is that the person who helps the nonverbal person type-- by supporting his wrist, holding his hand, or placing a hand on his shoulder or leg-- is consciously or unconsciously guiding what they say. Under objective lab conditions, FC has never held up well to scrutiny.
But then neither has prayer.
What I Believe About Autism
Part One: What Autism Is
Our brains have evolved in order to serve both us and society. That means that most people's brains tend to forget and remember similar things. This is in large part because we tend to make neural connections that are similar in nature and strength to people around us. These are actually physical connections in the brain-- most people's brains connect information in similar ways.
I believe that most types of autism are caused primary by a tendency of some brains to make connections that are stronger in some cases and weaker in other than most people do.
For example, I think understanding the dietary and gut problems of many children with autism is much easier if you look at the case of Daniel Harrison. He suffered an extreme case of acid reflux as an infant, and has been unable to eat since. His autistic brain made such a strong connection between food and pain that he has been in danger of starving to death.
The stronger my emotions are, the harder it is for me to understand them. When I am heading for a meltdown, all I know is that I feel bad and that that bad feeling is more than I can deal with. Later, I am usually able to go back and figure out what the emotion I felt was and why I felt it, but at the time? No.
I become increasingly confused, frustrated, and agitated. I feel under attack. I feel stupid and incompetent. And because most people do not seem to have these problems to the degree I do, I also feel increasingly isolated, lonely, and sad.
But none of those are the root emotion that caused me to become overwhelmed in the first place. They are simply layered on top of it, making it even more difficult to identify.
People with autism need help learning how to function in the "dry land" of the world created by and for neurotypical people. We need to learn how to simply survive in situations like work and school, which can often be hostile and confusing. We need to learn how to communicate effectively with people around us. And we need to learn to form satisfying relationships. None of those things come easily to most people with autism. We need additional education in those areas as we grow up, and we continue to need it as adults.
But we also need help learning about our internal worlds.
Because autism education is driven by behaviorists, there is a tendency to deny that autistic people have an inner reality which is distinct from that of NT people, and, in great likelihood, substantially different from other people with autism. Because our inner lives are unsual, and because emotions tend to be confusing for us, we also need education to help us understand ourselves. We need guidance and support as we explore the special interests that will bring us joy and be the foundations of our careers. We need help understanding our own emotions before we will ever successfuly understand those of other people. And we must be taught explicitly our own value. We must be taught that, although we must adapt our behavior to survive in a neurotypical world, there is nothing wrong or bad about our truest, strangest, most autistic selves.
Laws do change people's minds, though. It seems like they don't because there are always a reactionary few who are vocal and obnoxious. But, frankly, for most people the law is right just because it is the law.
The trouble with John Elder's point of view is that if you decide not to go someplace because other people don't want you there, you can end up with nowhere to go. My heart aches for kids like the autistic teenager who told me he wanted to be homeschooled because, "I just think I'm a problem."
If you allow other people to define you as a problem, to say they have the right to deny you employment, you may not be taking on the role of a victim, but you are also not taking on the role of the full and equal citizen.
I wish I were as handsome and charming as Hugh Dancy, but I do not want to be like Adam. And I am, and I have to make the best of it. Damn. I wish I were an actor and this life were a movie and it would end and I would get to play a better part. Or just get to go home at the end of the day. One of the reasons I love movies and TV so much is that they provide me the only opportunities I have to be in a room that doesn't have someone autistic in it.
Adam messes up that experience. It's exciting, it's empowering, but it hurts. I want to see people like me on the screen. I do not want other people to cry because I remind them so much of them. I feel, and I know this will offend some of you but it is the only word that fits, retarded.
"How are you?"
What a stupid question. Or, rather, how stupid the way we ask and answer it seems to me, as an autistic person. We tend to have problems with greetings, and that question in particular. It's hard to understand why I'm supposed to ask it, when I'm probably not all that interested and the person answering is probably just going to say, "Fine," anyway, no matter how they actually are. And it's no fun to answer, especially since I'm just supposed to say "Fine," too, and, how likely is that to be true?
It feels hypocritical and pointless. It feels like butt-kissing, forcing myself to undergo a humiliating ritual because more powerful people demand it of me. And it's not just me-- I hear this complaint from aspies I work with all the time. Greetings are painful and meaningless to many of us, and it's hard not to resent being forced to do something that we don't understand.
My decision not to have children is one that I made for myself. It is not a judgment of you for having kids or for wanting them. Even if your autism is much more profound than my own, it is possible that you have capacities that I lack. Also, you must remember that I am a teacher, and I exhaust the resources I would need to parent well at my job. And it's probably significant that I've only thought about kids when I was with a male partner, and we both assumed that I would take on the primary parenting role.
But it is possible for me to both feel strongly about my decision not to have kids and to fully support you in your parenting. Me not wanting children does not imply that I think you were wrong for having them, or are wrong for wanting them.
I am not speaking for Zoe here, and her experience may have been completely different from mine-- but, Robert, you can expect to be listened to in a way that we cannot. You don't have to put so much effort into communicating that an email correspondence about something you feel strongly about sounds impossible. You don't know what it's like to have to work hard to be as polite as she was, and to fail drained by that effort, and cheated when you are still treated like a rude creep. And, again, Zoe may not know any of those experiences, but lots and lots of people with autism do.
You cannot be expected to know these things. You don't know a lot about autism. But there are several NT people who have followed this closely, who do know a lot about autism, who did not point out to you that you keep asking things that might be impossible for the other person to do.
And I wondered, what's the point of knowing about the communicative challenges that people with autism face if you don't use that knowledge in a situation like this? Why was no one NT giving you the information about autism you needed?
We have proven that exceptional individuals like Bill Cosby and Barack Obama can transcend race in the United States. But often, though, we have been content to stop there, rather than working to make race something that does not need to transcended.
The story of someone like Temple Grandin proves that people with autism can succeed. And she makes it clear that her extraordinary success is a result of her autism, not "in spite of it" or "a triumph over" it. But people who write about her do use that language all the time.
It makes no sense for the government to simultaneously fund the Combatting Autism Act, spending millions of dollars to research autism, and to cut Medicaid, which provides services to real autistic people.
But that's what they are doing.
And let's face it-- if Autism Speaks cared about providing services to people with autism and our families, they would be putting the same kind of political muscle into opposing cuts to existing services, both in Medicaid and in education, that they put into autism-specific legislation.
But what they care about is the development of tests that will keep parents from having to go through all the pain of having an autistic kid in the future.
When people with autism are forced to move to move abruptly from one situation or activity, it can be jarring, like moving from a dark movie theater to a sunny street. By making transitions smoother, we reduce the amount of stress we are under and increase the chance that we will be able to move successfully from doing one thing to doing another.
How do we do this?
Mostly by using our senses to help prepare us.
When I was very small, my mother was the only person I was really able to take in. She was the good part of the world. The rest was baffling and frightening. She was safe.
And she taught me to connect, something that was very hard to do. She used her voice to call me into the world. She sang to me before I was born. Her voice is love to me. She taught me that music is love and reason, and a way that I can always comfort myself. She taught me that words have music, and that, if I could get the tune right, people would understand me, even if they didn't understand the words.
And that was how I learned to be a person who could interact, however awkwardly, with others. That's why I am not obviously disabled to most people who meet me.
I do not worry about missing my mother's voice. My own voice is derived from hers, and it is the finest part of me. She is in every word I say, every tune I hear. She always will be. I will always be able to hear her.
But my heart is breaking because I am afraid that soon I will be unable to touch her ever again.
When people have extremely limited communication, the people who best know their needs are usually their parents. Their parents need to speak up as accurately and as passionately as they can about the needs of their children. They should never be told that their voices do not count, that they are not knowledgeable, or that they are not part of the autism community. I try hard to listen to parents, but sometimes I do a terrible job. I have impaired communication and social skills. I'm trying.
But I really don't like the idea that parents can speak for their children. Not because I think adults with autism can speak for them better but because, again, I think no one can really speak for them but themselves. So we all need to do our part.
Part of that is recognizing that autism is a developmental delay. Many people who cannot speak clearly today will do so in the future. Many, many more will be able to if we abandon the idea that we should basically stop trying as hard as possible to teach basic skills as soon as kids hit the age of 21, or otherwise age out of school.
The problem with asking about whether or not a cure for autism is desirable or not is that it avoids the more significant truth: there is no compelling reason to believe that autism is, or ever will be, curable. It doesn't matter whether or not I want to be cured of autism or not. Autism is unusual physical development of the brain. That's not something that you can cure. Asking whether or not I would like it to be cured is not helpful. And any answer I would give would not be meaningful.
Autistic people should not be forced to say that we do not want to be cured in order to assert our own value.
Did Max wander? I guess so-- he went off unsupervised into a place he wasn't supposed to.
Was it a result of his autism? I guess so-- his difficulty with changing plans and his obsession with dinosaurs certainly had something to do with it.
Should it be added to his diagnosis? At this point, it wouldn't be. But what if a similar situation happened again? Kristina's a pretty nervous lady. Adam and she are both control freaks. If Max made one or two more outings in a similar vein, I think this exact behavior could result in wandering being added to Max's diagnosis.
And what if in each time it was the result of broken promises and poor supervision?
It is possible that Rochester's attitude had nothing to do messages she got about autistic children from her work at Children's Hospital. It is also possible that Autism Speaks had nothing to do with any negative attitudes she picked up there.
And-- this is important-- Rochester was not a reasonable person. Even if negative messages she picked up from Autism Speaks did affect her, that would not mean the organization should or could be blamed for Rylan's death.
However, that does not mean that people who are alarmed by this crime should not also be alarmed by the way Autism Speaks has talked about autistic people.
It is especially important to take kids with autism out into the real world to see and interact with real things Think how different our world would be if Temple Grandin had never visited her aunt's ranch. She needed to smell the cows and look into their eyes to find her life's work.
Her mother knew that the ranch might be a good idea because Temple enjoyed riding horses. Things like horseback riding or music lessons may be the best way for an autistic person to learn how and what to learn.
And, like visiting a museum or the theater, they can be especially challenging for us. We can be especially challenging during them.
But we need to go.