[Reprinted from SOUND OF FALLING SNOW, edited by Annabel Stehli
(MidPoint Books, New York, 2004)]
Nine years ago a book similar to this one was written. It presents stories of children who made exceptional progress, or were "cured" of their disabilities, by the use of a therapy known as auditory integration training (AIT). The title, Dancing in the Rain, described an act that was done by an individual who had benefited from AIT, an act that, owing to the person's autism, was simply not possible before AIT.
In that book, my mother wrote a twenty-page essay regarding my life and how I had benefited from AIT. In the following essay, you will read my thoughts not only about treating autism but about "curing" it by not treating it at all.
A BRIEF HISTORY OF MY LIFE
To begin, let me list some of the main events of my life:
· I was told that at the age of two I pushed people out of the front door of my apartment to prevent them from staying, and if they didn't leave, I'd stay in the hall and scream.
· At the age of three, I arranged a tableful of lollipops that were bought from various stores in Manhattan, where we lived. I had to get two lollipops every day - one for each hand - from a number of stores. I spent many minutes examining each one in the store looking for the perfect ones, even though I never ate them.
· At the age of four, I put up road signs in my house, decorating the walls to look like maps and street corners. I became obsessed with alphabet letters and number signs and objects, and soon they would replace the lollipops I simply had to buy when I went into a store. Sometimes my mother would make me work for a special letter or number, such as a solid brass "2," which cost ten dollars. I also had a constant runny nose due to chronic sinusitis.
· At the age of five, I finally learned how to use pronouns, saying mine instead of yours or his or "James's" when referring to myself.
· At the age of six, I entered a Montessori school, unaware of its point and unaware of what I was doing, not knowing why I was there, not knowing why my mother dropped me off and why she picked me up, why there was circle time, just completely ignorant about everything, and trying my best to understand the reasons for school, and why I was always interrupted by everyone despite my determination to work on the Wisdom Cube Puzzle. I was accused of not trying hard enough to tie my shoes, and once my teacher made me walk through deep snow with untied laces to "teach me a lesson."
· At the age of seven, I attended kindergarten for the first time and enjoyed my time with Mrs. C., my kindergarten teacher, who accepted me as I was, even though I ignored the other kids and could do more things than they could.
· At the age of eight, I attended second grade, and it was a disaster. I was taken out of school in December, and once out, I helped my mom write a book called The Self-Help Guide for Special Kids and Their Parents. I learned more outside of school than in school.
· At the age of nine, I successfully adjusted to a life of not eating wheat-based food after realizing they caused the headaches that plagued me every single day and caused severe carsickness as well for several years.
· At the age of ten, I had a great time attending normal public school again with a teacher named Mrs. E., who believed that one should embrace making mistakes rather than fear them, in order to turn them into learning experiences.
· At the age of eleven, when The Self-Help Guide for Special Kids and Their Parents was published, I enjoyed normal fifth grade until my classmates began to tease me for the last two months of the school year. One week after school ended, I developed a mysterious stomach illness that normally strikes autistic children at a younger age.
· At the age of twelve, the stomach problem was ongoing and I could only digest liquid meal replacements.
· At the age of thirteen, I began writing my first book, Out to Get Jack, the story of a young autistic boy named Jack Lack and how he deals with the illogical world around him. My intention in writing the novel was to complete something after various years of failed attempts to finish something long and complex. In the real world, I do not make sense sometimes. In Out to Get Jack, Jack makes sense.
These events are far from normal, reflecting that I still do not lead a completely normal life and never will. I have problems resulting from my autism, but I also have to deal with social assumptions that I believe are wrong. Although others assume that I am cured of autism, I truly do not believe I am. This is not to say that I have not greatly improved from earlier times. But I did that not by curing my disorder, but by turning it into something that is not regarded as much of a disability.
DEFINITION OF A DISABILITY - THE WISDOM OF DUMBO
Do the events of my life indicate a hopeless disability? In one sense, yes, for I still cannot do various things that are normal, and I'm terrified of things others wouldn't normally be scared of, but the question is: How many of the things I have trouble doing are necessary actions in order for someone to live a happy life, or at least, an independent life? On the other hand, many of the things that I can do extremely well are regarded as pathological or "splinter" skills, such as memorizing entire road maps or detecting visual subtle differences, as in the lollipops that I chose so carefully when I was three. My mom was frequently advised by doctors and therapists to take away my letters and numbers, discourage my interest in road signs and maps, and force me to play with other kids, despite my terror. I feel, though, that had she done all that, I would never have discovered my talents or become an outside observer, who can write about the events around him rather than participating in them. If she had taken away my "symptoms," I would have lost myself.
Let us think, for example, about the story of Dumbo. Dumbo is an elephant who does not fit in because of his big ears. But wait a minute here! His big ears are not his fault.
So why should he be ostracized because of something that isn't his fault? Well, that's just the way things are, even among animals.
However, when Dumbo realizes that his big ears give him the unique ability to fly, he becomes famous and popular for it. Is the problem of his big ears cured? No. His big ears are unchanged and are still a part of him. However, what was initially regarded as a disability is now perceived as a special ability, admired by everyone.
Similarly, I believe that the best thing that a parent can do for an autistic child is not to "cure" him, but to teach him enough so he can function in society, and then find ways to take his disability and problems and turn them into something useful. For any ability or trait, as useless as it may seem, can someday become of use. I doubt Temple Grandin would have been able to revolutionize animal facilities if it weren't for the "autistic" terror she felt in a world she did not understand and her realization that animals were just as baffled and terrified of the manmade world as she was.
Therefore, when you see your autistic child lining up cards, for example, don't punish him for "perseverating," drug him to stop this "obsessive" behavior, or put him in behavior modification programs to "extinguish" this autistic behavior. Don't see it as "acting strangely." See him as the architect or draftsman he could become, designing the strongest buildings or drawing the straightest lines.
THE EVOLUTION OF AN ABILITY
When you go to an orchestra concert, it seems that the musicians play effortlessly. The violinist makes it seem very easy to play a violin, and someone could get the idea that anyone can play a symphony the moment they pick up a violin. But it takes a lot of work to become a violinist - and a lot of practice.
The musicians didn't always know how to play their instruments. They learned how to do it. And besides - would you expect an orchestra to play you a symphony after everyone had had only one lesson on his or her instrument? No. But would you discourage them from playing since they couldn't play as well as more experienced people? No. The same is true with an autistic person. He may be nonverbal, he may be unable to tie his shoes or pour his juice, but if you find the one thing that he can do, then you should try to promote it in any way. Encourage him to perform his special ability no matter what it is, and someday it will be useful.
And remember that no talent becomes a wonderful ability instantly. Even the musical genius Mozart didn't start writing an opera the moment he sat on the piano - but his ability to play music eventually led him to write operas.
It took me many years to develop my writing ability in order to finish a book. I began by writing nonsense poems at age four, then I wrote short stories, then longer essays, and finally novels, finishing my first novel when I was thirteen. All along the way, my mother was criticized for letting me play with flashcards, watch alphabet videos endlessly, spend hours at the computer, keep away from other kids, and most of all, stay out of school. All of these autistic behaviors, however, helped me develop my ability.
AIT - HOW I'VE BENEFITED, AND HOW IT CAN BENEFIT YOU
After reading all about ability and developing natural talent, how, the reader may ask, does auditory integration training (AIT) fit into the picture? You might have assumed by now that AIT is completely unrelated - after all, what does it have to do with talent? Well, the truth is, my proposal to turn disability into ability does not mean that AIT is useless. AIT is actually an essential part of the process. For in order to get someone to develop and use his talent, other things must come first. And if it weren't for AIT I would have been unable to begin to develop my ability. Before AIT I was only able to write nonsense. My typing was my form of babbling. One of my early writings was entitled, "Ostrich Peemint;" and went like this: "Anker wacker wichwack cheese fewick:" I could decode words on a page but didn't understand them. Since reading and typing came before speaking, they were my "native" language. Speaking was a second language to me. Speaking, however, was essential for me in order for my writing ability to evolve, and I did not pick up speaking until I had AIT. I remember having problems talking, then suddenly I was able to talk after AIT and I was shocked that I could do so. As a result, AIT was essential as it gave me the ability to turn my curse into a blessing. What I am today is the product of this therapy.
The ideal "cure" for autism is to first give language to one's child, no matter how. The next step is to give him the ability to understand. Then you can encourage him to use his talents and he can communicate the things that he is interested in to you. But you need to start understanding him as well. Don't just modify his behavior or drug him so he doesn't care what happens to him. If he is licking the walls, ask him why. Chances are he needs the oral stimulation to help him talk better. He is not misbehaving; he is trying to heal himself.
I do not remember a lot about my life before AIT. I remember being changed but not what it was like before the change. One of the first changes of AIT was the sudden ability to sit comfortably in a restaurant. Since I have zero memories of actually causing trouble in a restaurant, I cannot make a comparison. I do, however, remember sitting down in a restaurant and not causing trouble. It was the second day of AIT and my mom said it was the first time I could sit without diving under the table or knocking the silverware on the floor. The same is true of all the therapies I had. I remember being unable to do something, and then, as if by magic, suddenly being able to do it, and not knowing why.
WHAT HURTS THE CAUSE OF HELPING THE AUTISTIC PERSON
What can hinder the development of a person with autism are society's assumptions that the person does not do something because he is unable to and that he must be forced to learn that thing regardless of whether he wants to or not. There is also an assumption that autistic people, who prefer to be alone, must be horribly unhappy, and therefore, social events and friends must be forced upon them to make them happy. To me, this is as faulty as the assumption that when a black man walks down the street, an unenlightened person might think he is a drug-dealer, an escaped convict, or a thief. One assumption that society makes is that everyone enjoys getting presents during the holidays. I, however, hate receiving presents. Every year I ask for nothing and tell everyone that I hate presents, and every year I am showered with gifts that I do not want and do not use. For some reason, everyone understands the desire for presents, but no one understands an aversion to presents.
This may sound like a small example, but it leads to all sorts of accusations that I am rude and thoughtless, and that it is my obligation to lie and pretend that I like something when I detest it. Usually the presents that I didn't want in the first place become the subject of a huge battle that I didn't start and yet I am always blamed for it. This does not help me want to interact with other people - quite the opposite.
Also, people automatically make assumptions that because a child has turned five, he can automatically tie his shoes, or comb his hair, or remember to brush his teeth. When an autistic child cannot do these things, he is often seen as bad or obstinate. Then instead of helping him, he is punished, as I was at the Montessori school, or accused of not trying hard enough. It is important to remember that the calendar should not dictate when a child is supposed to master a certain skill. When I was in fourth grade and my mother found me in the school hallway struggling with my shoelaces after the bell had rung, she went out and bought me a pair of Velcro shoes, and that problem disappeared from my life.
In fact, assumptions are the worst things you can make about an autistic child. There should be no assumptions in autism. A seemingly meaningless talent can open up an entire world, or the inability to do something can indicate a lack of interest or a simple misunderstanding, not defiance or misbehavior. Before you decide to change something, seek to understand it.
MY TWO CENTS ABOUT WRITING
When I start to write a book, I remind myself that I have learned things differently from others, and therefore can write about things in a different way that seems new and interesting to others, and in some ways, downright hilarious. Writing is also a way to tell people how I feel without having to deal with making fun of a single person, or to know I'm not going to be made fun of by doing so. For example, if I were to say I was against abortion, you'd know that I was against abortion. But if I were to write a story about a woman named Mrs. Banneker who was against abortion and I made fun of people who supported it, you could say that I might be against abortion, but there is no way you can truly know. A hundred years from now, when I am dead and gone, and somebody reads the story about Mrs. Banneker and her anti-abortion beliefs, he or she may associate her with people they know. But can you accuse the writer of making fun of those people? Of course not. The writer never knew them!
When I write, I try to voice my opinion in humorous ways, but having been teased in school, it is one of my first priorities to make sure that my stories do not personally hurt any one person, but only a group that believes in certain things.
Now that I write a lot, I am no longer frustrated when no one can understand me. When I can't explain myself in person, I just put my thoughts into a book. When I am writing, no one is arguing with me about of my beliefs, and when I want to say something that I believe is true, I put it in a work of fiction. Literature has been an outlet for many ideas in history. Laws may tell us how we should behave and how we should be, but if you want to find out what mankind is really like, look at his creative works.
MY OWN HISTORY OF FAILING TO MEET SOCIETY'S ASSUMPTIONS
One of the worst accusations made against autistic people is that they don't "fit into" society or that they lack social skills. We are always accused of being ignorant of the rules whereas often we know the rules just fine but simply do not accept them.
My most dramatic experience where I challenged the assumptions of society involved challenging the gender line. There were certain things I expressed an interest in that people could not accept simply because I was a boy. This didn't make sense to me. When I was interested in something, why did it matter whether I was male or female? (Of course, I know now, but back then, I couldn't understand.) Sometimes I wished I were a girl instead.
One day, I attended my sister's preschool spring festival. During the festival, there were tables offering various things that one could do. Right next to the section where one would get his or her face painted was a station where one could get his or her nails polished. I was curious as to what it was like to get one's nails polished, and even though I did not care for the idea, I had not experienced it and knew I did not have to experience it ever again after I had done it once.
I sat down and asked for my nails to be painted red. The person at the table painted them red, and I felt proud that my nails were painted. I showed them to my mother with happiness. But my mother went crazy, along with everyone else I showed the nails to. Little did I realize that I had shocked everyone because I was a boy whose nails were painted, and boys did not wear nail polish. The more people who saw them, the more questions I had to answer. They wondered why a boy wanted to paint his nails. Then other boys around me asked their parents if they could get their nails painted because I was a boy and had my nails painted, but the parents must have said that I was weird and that they weren't going to be allowed to.
Then during the summer, when I was at the beach, an event occurred that involved dignity more than bias. My sister and I, dressed in T-shirts and-shorts, were allowed to wade in the water. My sister complained that she was too hot. Because of definitions of nudity that she did not know at the time, my sister could not take off her shirt because it would expose something that could not be uncovered. I could not understand at the time why she couldn't do it. I realized that I wanted to challenge the rule to see what would happen. I also had remembered taking off my shirt in the past and not getting in trouble. So why would my sister get in trouble?
I realized that if she was going to get punished, so would I. So I took off my shirt. What shocked me, however, was that I did not get in trouble, nor was I even noticed. When my sister said to Mom, "But he was able to take off HIS shirt!" my mother said to her, "That's because he's a boy!" I could not understand what was happening, and I did not learn the truth until an hour later.
During a visit to my aunt and uncle's house, I saw a book in one of the bedrooms. Although I had nothing else in common with my cousin Erika, she and I both liked the book, a catalog for a series of dolls and books known as the American Girls Collection. It was a series that was formed to teach girls about history by writing historical fiction involving various heroines. Although I am not a girl, I was interested in the stories. I became obsessed with them while reading the catalog, and you can imagine the trouble that I got into when my mom learned about my obsession. She even said to me, "I had hoped during the visit that you wouldn't find that magazine, because I knew that you'd get obsessed with the American Girls Collection if you did."
I didn't know that what I had done was wrong or that I wasn't supposed to be interested in girl stuff. After reading some of the books, I discovered that girls were often expected to learn how to make something called a "sampler." I was interested in learning how to do this, too, and remembered that my aunt knew how to knit blankets. I wanted to learn how to knit. (Little did I know at the time that samplers were made not by knitting but by embroidering.) I learned that my mom knew how to knit, so I asked her to teach me. I learned it, and became a spectacle yet again. Knitting was very calming to me, but everyone was shocked when they saw me doing it. To them, I was the first boy they had ever seen knitting! Whereas I could not understand their shock! And I also learned that because of that, it was sometimes impolite. Once, I accidentally embarrassed Mom when knitting in the waiting room at a doctor's office. I had no idea that it was impolite.
What am I to do about all of this? Of course, I do not want to change the world, and will not. This is not my plea for changing the rules. I am learning to live with the absurdities of social life. But I do know one thing: Whenever I do not agree with something, it does not matter whether I say so or not as I can always write about it in a book. Again, my autistic talent is helping me to cope with my problems. And besides, the American Girls Collection presented me with historical stories of what I had been personally fighting - the domination and oppression of one group over another (in this case, males over females) for thousands of years. The American Girls stories taught me that, throughout history, no one has liked being told that they're wrong and that they have to do things someone else's way, especially if that way is harmful or makes no sense. These stories led to long discussions with my mother and father about women's rights and how women had no real power until this century, when the feminist movement began. As an autistic person, I could understand the stories, perhaps better than the girls they were written for.
Although I have talked on and on about other parts of my life, I must admit that all of my abilities to do things today would not have existed if it weren't for AIT. For I may have the ability to feel something, but what good is it if I can't communicate it to others?
Human beings, after all, know nothing about others except what others communicate to them. But if we see someone doing things and cannot communicate with him, then we have no idea what is going on. It is a mystery to us, for example, as to what it really feels like to have Alzheimer's disease. That is why it is more important to teach an autistic child appropriate language before anything else.
AUTISM'S GREAT DIVERSITY - A DISCLAIMER
When searching for your child's special talent, remember that autism is a diverse disorder. As a result, not all autistic children may even have a special ability. Some kids may have more than one. A therapy that works for one autistic child may fail for another. Every autistic individual is so unique that we can say that the problems of one child are a disorder unto itself owned by that one child, and only that child.
But what does remain universal is this - the only true cure for autism is a cure that turns the individual's talents into functional skills. Buying lollipops may not be a useful talent but observing, evaluating, judging, selecting, sorting, and organizing them provided me with skills I would later need as a writer. Road signs and maps may seem like an autistic interest, but my mother would have gotten lost hundreds of times without me as her navigator.
Learning to function is a long journey, involving many side trips down a long road. I have not completed this journey yet, and still have a ways to go. But I can see that my car is still on the road, and that at least for now, I am not "out of gasoline."