Tuesday, June 19, 2007

Reasonable People

This isn't my usual blog entry, it's personal. Very very personal.

At the broken cliff,
pebbles tumble down again,
a gathering of scree.
At thirteen my only son
still struggles with his letters.

My son is autistic.

Let that bald statement resonate a while. Dredge up all your stereotypes and media hype, 'Autistism Every Day' with the mother thinking about killing herself and her autistic daughter, about James McElwan, the autistic teenager shooting 17 points in the only varsity game he was allowed to play and being hailed a hero. Think about head banging, severely disfunctional kids, about the Rainman, about everything.

My son is different.

My son is a unique person who shares many of the challenges of other youths with autism, but the hype and the hopelessness, the extremes of autism, are not him.

Nowadays they label him 'high functioning' and diagnose him with Asperger's Syndrome -- as if the anguish of his childhood was somehow unreal, unimportant, and insignificant. As if nobody ever told me he was hopeless, that he would never be mainstreamed, would probably never speak, was mentally retarded, and would never hold a job or live independently.

As if it was 'easy' for him to overcome what must have been a 'mild' language impairment. As if we never spent a day consumed with six hours of tantrums. As if nobody had ever stood in line behind me at the grocery store, listening to him scream, saying, "If that was my kid, I'd smack him." A firm believer in non-violence, I was sorely tempted to turn around and tell that woman, "If you were my kid, I'd smack you."

I knew there was something wrong with this child when he was born. He slept too much. I was told he was a 'good baby' and we were lucky. He slept and slept -- a relief since his older sister had been colicky, but worrisome too. Late to his milestones. My partner's family kept saying, "He's a late bloomer. You worry too much." The pediatrician said the same thing. I tried to listen and be reassured.

At two and a half, I called Child Find. They came, saw him, and ventured to suggest he was mentally retarded. My ex went ballistic; that side of the family refused to accept that there was anything wrong with him and identified me as the problem.

We split up, I took the kids. We were in a shelter for a while, then a flat in an old house. We were desperately poor. I had my own disabilities to deal with, but I knew, absolutely knew, that the kids were better off with me. I accepted my children as they were and wanted what was best. I wanted to help my kids, not pretend everything was fine when it obviously was not.

To make a long story short, he was in pre-K, and the school wasn't helpful. They even asked to tie him to his chair to make him sit through Circle Time. I called a laywer, a very nice man who didn't charge me a dime to tell me what my rights and my son's rights were, and to advise us what to do. By the time my son was four I had gone through plenty of bureaucracy and a great deal of testing, and he was diagnosed with Pervasive Developmental Delay with Severe Language Impairment and Austistic Type Symptoms.

How's that for a mouthful? It's also some fancy footwork to avoid a diagnosis of autism. When I asked the psychologist why, when my son had 13 of the 14 classic symptoms of autism, he didn't diagnose him, he replied, "Autism is a throwaway diagnosis. I don't diagnose any child with it if I can possibly avoid it because the schools will shut him away and do nothing for him. They think it's hopeless, but I think your son can develop."

Let me give you a simple example of my son. As part of his testing, he was given a standard IQ test. IQ tests are highly language dependent. He scored a 50. Your dog would score a 50! When given a different, non-language based IQ test originally developed for Deaf children, he scored 120. With this we had a portrait of a bright young man who was deeply impaired.

The school did a 180. With his new diagnosis they put him in a classroom for students with Communicative Disorders. It was small, with a high teacher to student ratio. He had a wonderful teacher for two years, and a great speech pathologist, and then two more years with another great teacher. When he was first diagosed and I hoped that he could eventually be mainstreamed, they told me that was not a reasonable expectation. Yet in 4th grade he was placed in an academic class with reading support. He is now 16 and mainstreamed in all classes and slated to graduate in two years. Nationally, only 25-30% of children with autism graduate. He is a B student.

He was deeply language-impaired when he was young. When I spoke, nothing made an impression on him. If I had suddenly started speaking to you in Japanese, you wouldn't understand (unless you are a Japanese speaker), but you would realize that the sounds coming out of my mouth had meaning and were intended for you, and you would make an effort to find some way to communicate. Not my son. He ignored everything until he couldn't ignore it anymore, then he screamed. And because he also had perserverant behavior, once he started screaming, he couldn't stop.

At school they taught him 'Total Communication' which used everything to communicate: speech, sign language, pictures, pantomime, symbols, routine schedule, demonstration, etc. He learned how to sign 'more' and a few other words, and then, when he was four, said 'cookie.' However, he was unable to answer a question like, "Do you want a cookie?" He would simply stare at me.

In 4th grade, he entered with a barely second grade reading level. He did his reading homework dutifully. He set the timer as he was taught, and when it dinged, he stopped. Right in the middle of a sentence, paragraph, page, or story. He was not interested. I searched and searched, trying out many different books. I knew the key was finding something that he liked. Eventually, I found it: Japanese comic books. He loved Card Captor Sakura and Gundam Wing. The night we drove home from the bookstore with him reading in the car, holding up the book so the light of the streetlights fell on the pages, I knew we'd found the ticket. In fourth grade he gained two grade levels, catching up to his 4th grade reading level.

He is now not only reading at a grade appropriate level, he is taking Spanish in high school. He greets me with 'Hola, padre, como estas' in his emails or when I come to pick him up.

When this child was 6, and had few words, I some how made him understand that his beloved cartoons had 'voice actors' who got paid for the job of being the voices. Once he understood that, that's what he wanted to be when he grew up. I was in despair... how could this child with nearly unintelligible speech composed of only a few words possibly become a voice actor? But I didn't discourage him. His sister, who was 8, hit on the notion of turning on the close-captioning on the videos and making him read them out loud and act the parts. At first he only a knew a few words, but soon he could recite the whole thing, altering the pitch of his voice for male and female roles. (Memorized from frequent watching of the tapes, I suspect.) He was a perfect mimic. When he randomly produced a sound or statement, I could identify exactly what video, scene, and character it had come from.

When I say 'random,' I mean random. He would explode with sound effects (he adores them, especially farts and belches), and random statements that bore no relationship to the context. I was delighted -- it meant he was using his imagination. Previously, when he was little and showed no signs of imagination, I was deeply worried. To be blind or mute is a disability, but to have no power of imagination is be subhuman. But it was there, it just needed a means to express itself. Cartoons were it. Thus, he early on acquired a lasting nickname, "The Random Noise Generator." We're all very used to it, but we have to admonish him when we're in public places, like restaurants, that he needs to steer clear of bodily functions and turn the volume down.

I have seen the same behavior in other bright but language-impaired autistic children when I have been a substitute teacher and paraprofessional in the public schools. I encourage such behavior, although most people try to suppress it in favor of 'more appropriate' expression. Noooo! The child has found a way to express himself, don't squelch! Run with it! Give him a few years and his vocabulary and expressiveness, yes, even his social skills will improve. At the very least, he will become popular with other children. I cite my own son's experience as evidence. When his fellow students dubbed him, "The Living Cartoon" it was a measure of admiration and affection. Come on. What's wrong with making people laugh? Even in the middle of a test?

When my son was 12, he appeared on stage of the first time and read a story to little children, voice acting the parts. He OWNED the stage. No, it's not just me and my paternal pride. The Director of the program was sitting next to me and kept saying, "He has talent. He has charisma." Other children on stage were good, but there was a quantum difference. He took to it like a dolphin takes to water.

Less than a year later he got cast by the local community theater for a bit part in a playreading series. For this, the actors sat on stage and read the parts, voice acting them, then the audience engaged in discussion about the play and whether the company should stage it. Of the 16 actors on stage, he was one of the best. He was absolutely furious when adults far more experienced with himself muffed their lines -- he had rehearsed diligently for a month. They hadn't. He was so good that the technical director for the theater sought me out at work (I worked at the theater then) to tell me how good he was.

He continues to study drama in school and to participate in theater workshops. He loves comedy, especially physical comedy -- his first exposure to Charlie Chaplin had him laughing so hard he nearly fell out of his chair. He has had minor roles in other productions. After high school he plans to go to college to become an actor. He speaks clearly now and people meeting him for the first time often do not realize there is anything different about him.

He reached this by imitating cartoons. When he was in elementary school his educators complained about his 'stereotyped' behavior. I was delighted by it. He had gone from a child with no emotional expression who couldn't even say, "I'm hungry," to a child who had the vocabulary of cartoons to call upon and use to communicate. The gross facial exaggerations and extreme body responses and physical humor of cartoons suited him perfectly. As he slowly began to utter statements of his own volition, he repeated segments of cartoons and movies that served his needs. During this phase people thought him odd, but as his repetoire of movies and expressive ability expanded, he developed fluency and naturalness.

Unfortunately, if caught in a situation for which his cartoons or family has not prepared him, he doesn't know what to do. Three years ago I fell asleep while making dinner and the food burned, filling the house with smoke and setting off the alarm. I woke up, ran to the stove and dealt with it, then looked for him. I found him outside. He had been taught that when the fire alarm goes off, you leave the building and meet at the designated location. He had done exactly that. But all the time the house was filling with smoke, he continued what he was doing without reacting to it. Nobody had ever told him what to do if you smell smoke! I swiftly updated his education on that point! It also underscored to me that you cannot simply assume he knows something -- you must spell out every single little step. Once he understands it, he is reliable about performing it.

In another example, we usher at the community theater. I taught him how to read the seat numbers, taught him how to greet patrons, and explained to him that he needed to walk slowly so that old people could keep up with him. He practiced his lines diligently and did a good job. Patrons complimented him 'What a nice young man!' -- including the old lady who was once so offended by his poor table manners that he had been uninvited from volunteering at the theater for an extended time. However, when asked an unexpected question, like, "How long is the show?" he simply looks blankly at them. If you've dealt with autistic people, you know the look. The we-are-now-on-another-planet-and-you-are-only-vaguely-relevant-to-my-existence look.

I have been reading Reasonable People by Ralph James Saverese, recognizing much of my own experience, and being angry and rejecting much of what I also read. Don't get me wrong, I respect Savarese and think he and his wife have done a lot, and I concur with his liberal position on the need to truly serve the poor, the disabled, children, etc. DJ has developed a lot, and its due to the Savereses. My child wasn't abused and placed in foster care and bounced around from home to home.

But still...

And my experience is not just with my own son; I did a year teaching severely handicapped youth computer science, about half my students were non-verbal, several were autistic, and most were not literate. My experience with my son helped me get through to them. I'm not saying I worked miracles. What I'm saying is that I got them to achieve more than other people believed they could. The previous teacher had taught them about the Internet by taking them to a site online where they could color pictures. I taught them the basic structure of a network (by making them roleplay being workstations, routers, servers, etc, and passing a note around).

I taught them how to do a basic Google search for things that interested them. I had to spell out 'rollercoaster' and 'dogs' and 'Kenny Chesney'... but I caught one of my students shopping computer parts online to upgrade his computer at home. It took him a great deal of research, but he figured out what he needed, ordered it, and installed it. When he got the wrong part, he returned it and got the right thing. Guess what he was doing for a living? Pushing carts. You know the guys who go out into that grocery store parking lot and round up the carts? That's what he did. That's all he did. He didn't bag, didn't stock shelves, didn't sweep. He rounded up carts. Period. Because that's all they thought he could do. Because his verbal ability was low.

I have this radical notion: You teach the child you have. Not the child you wish you had. Not the child described in the textbooks and theories. As my Native elders (who have been studied even more intrusively and with less understanding that autistic people) told me, "Real life trumps theory every time." You teach them even if they don't speak, and you judge their accomplishments based on how well they do computers or art or or play volleyball, not on how well they use their voice.

You teach the living child right in front of you with their particular strengths and weaknesses. I believe, I truly believe, that every child can be reached. They can accomplish a lot more than they have been doing. Some of the students in my class were being warehoused and the aides paid no attention to them, having given up on them, but I tried to share my attention equally with all students and I did my damnedest to get through to them and I did. I'm not claiming miracles here. I'm claiming progress.

The single biggest and most important accommodation that we can provide a person with a disability is a change in our own attitudes. It's free. It's easy. It works.

By the end of that class I had every single student creating a short PowerPoint presentation to deliver to the class, voicing their slides themselves. Yes -- even my non-verbal students. They weren't very loud and their enuniciation wasn't clear, but they did it. Even the autistic girl who had started my class slumped against the wall, unresponsive, and staring into space. She watched the presentations by other students, was engaged, and eager to take her place at the projector to show her own slideshow. It took a lot of coaxing to get her to speak her slides and nobody more than three feet away could hear her, but she did it. The students loved it. They all cheered and clapped and were totally into watching each other slides.

The aides -- even the one who had thought it would be impossible to get these students to do PowerPoints -- were in the back, applauding and taking pictures. The program supervisor and a teacher from another class were in the back watching too.

Think of it. They'd gone from coloring online to making their own PowerPoints.

I got another job, working in the same building. At first my former students recognized me and greeted me when they saw me in the hall. Gradually, as time passed, they faded out, became blank, and stopped responding to my presence. Back in the same program, with the same low expectations, the same well-meaning but stupid teachers, and they slid back into the same state of apathetic, twitching, tuned out unperformance.

Gain requires reinforcement to retain.

Change requires commitment.

I love my son, but I don't think he's unusual. If you put him in the same place as those students, he'd be like them. Those students don't have to be the way they are, they can have more accomplishment, more pride, more independence.

I believed at the time I sought help for my son when he was very young that early intervention was important. Most children are diagnosed 'too late', meaning that they have fallen behind in school and developed a load of frustration that further impairs their fuction and which leads to behavior like tantrums and self-harm. These systems, the symptoms of frustration and anger, are then defined as part of the symptoms of autism.

Have you ever seen a giraffe self-harm? I have. And foxes and hawks and other animals too. I did a summer as a volunteer zookeeper at an inadequate rural zoo which shall remain nameless. The giraffes' pen wasn't large enough. They paced and the male in particular engaged in repetitive, perserverant behavior, including biting the other giraffes, banging his head against the barn wall, and other aggressive and self-harming behavior. He had to be kept separate from the other giraffes because of it. The fox, kept in her tiny cage, was pathetically eager for attention and play. She would run around and around, spastically, desperately, crashing into things. A hawk, likewise confined, picked out his own feathers, reminding me of my son picking at his scabs.

All these abnormal behaviors are things autistic children do, but these animals are neurologically normal. It is the environment that fails to provide them with enough space, affection, and attention that causes them to behave this way. Autistic people are different, but maybe many of the 'bad things' they do are not due to autism, but due to not having their needs met. People with autism are experiencing a kind of imprisonment in which sensory overload alternates with sensory deprivation. If a normal personal was subjected to alternating bouts of no sound and excessively loud sound, if people failed to relate to them and didn't have patience with them, if they were controlled and constrained the way autistic people are, they would develop similar behaviors.

In the case of autism, it is a disorder of the brain that imposes the first barrier, but it is the reaction and behavior of the people around them that imposes the second and more debilitating barrier. The child knows it is not receiving affection. He or she may attempt to avoid hugs and other demonstrations of affection because of autistic sensory disorder, but if the parents give up and withhold affection, do they really think the child is unaffected? Would you say a blind child was unresponsive and didn't need affection because he couldn't see his mother smile?

I am not a scientist, and I'm not an autism advocate. I'm a parent and a teacher with personal experience. My son is different. But my son is different because he has been raised differently, not because his autism isn't like textbook definitions of autism. My son is not a 'high functioning autistic', he is a normally functioning autistic. My son is what any autistic person can reasonably hope to achieve and has every right to expect. My son is what any decent person would want for an autistic person.

A change in attitude is the only accommodation that will really do any good. And it's free. There's not excuse not to have one.


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