My Unconventional Life with Autism
Good evening. My name is James Williams.
The title of my presentation is “My Unconventional Life with Autism.”
In this presentation, I am going to tell you various stories. They will consist of something that happened in my life or something I observed. Then I will tell you what can be learned from each story.
I’d also like to give the audience a warning. I’m going to use some terms and words that might offend some of you. There is a portion of one story that some people might find racist—this is because I am describing a story where racism was perceived but was actually not a factor a all. I am also going to be making jokes and criticizing teaching methods in school—a place where many of you spend your days as a student or professional. I would like it if you took these jokes humorously and not seriously, and these criticisms not as criticisms of any individual teacher but of teaching methods in general.
I’m going to start with something that I did when I was eight years old. My father and I were taking a trip to Denver for the weekend. We went to O’Hare, and boarded the plane. We were sitting in a three-seat row—a window, middle, and aisle seat. I was promised the window seat so I could see outside.
My father told me the number of our row, so I walked in front of him to get to our seats. When I got to that row, a black man was sitting there.
I waited until my father had gotten to our row of seats, and then he told to me to get into my seat. I asked, “Do we have to sit next to that jerk?”
This made my father furious. He made me apologize to the man. Then the man got up from his seat and agreed to sit in the middle seat so that I could sit by the window.
Why did I call him a jerk?
The black man tried to place the blame on my father, having assumed that I had made a racist remark. My father was mortified, since he didn’t know the real reason, and said that we lived in a very “non-diverse” neighborhood. The black man believed I had called him a jerk because he was black.
There actually was another reason, a reason that had nothing to do with race. While it looked like I was being racist, I was actually trying to make sense of a situation that did not make sense to me. You see, I had thought at the time that when a specific group of people, or a single person, bought seats on an airplane, they got the whole row to themselves. Since my father and I had bought the tickets together, I thought that we had bought the right to that row. I had traveled many times with my father, and we’d always ended up with a row to ourselves. I had no idea people shared rows of seats together strangers.
Since we had the right to this row, I thought, this man was a thief. And that made him a jerk.
At first, when I saw the man, I thought my dad might have made a mistake. Perhaps he meant the row behind us, where no one was sitting. If that was the case, then this man wasn’t a jerk. He was sitting in his seat, and I would not have mentioned anything.
But then my father asked me to sit in that row, and started packing our suitcases in the overhead compartment. This was it for me. If this was indeed our row, why was this man sitting in it? And why was my father not confronting him and telling him to get out of our row? Why was my father letting him get away with this?
So I asked what was, to me, a logical question.
You see what happened here? I thought something false based on what I knew, and then I acted based on that false idea. It makes sense now that you know why I did it. However, at the time, my statement simply seemed racist and downright rude.
What lessons can be learned from this event?
The first lesson is that you cannot expect an autistic child to know anything, even things that you think are obvious, unless he has conclusively shown to you that he knows it. Because he’s autistic, he doesn’t necessarily know what you knew at the same age. You might even find yourself in a situation where you can’t even predict what he’s going to say or do. And you’ll be just as uncertain and terrified that he’s going to embarrass you, as he is uncertain and terrified that you are going to get him in trouble!
In this case, my father not only expected me to know better than to call this man a jerk, but it never even occurred to him that I might be thinking like this. And the black man based his conclusion on what he knew—that it was racism.
Is this mindblindness? Yes, but not intentionally. Thus, I’m not going to be too hard on the black man or my father. When something doesn’t occur to you, it’s not your fault you didn’t think it until someone mentions to you that you’re wrong and you continue to think it.
When you analyze it, parents, and people who know children expect a lot from them. Parents assume their children will be rolling by six months, crawling by eight months, walking by fifteen months, talking by two years, and ready to go to school by age five. They do it without thinking, which is why it might seem like such a shock to you when I point this out.
I ask you, though—how many parents actually go up to their kids and ask them whether or not they can actually do those things that they are expecting them to do? Not many. And parents get away with it because somehow, if children are not disabled or autistic, they are able to meet all of those expectations given by them. And thus, the parent still thinks their expectations are engraved in stone.
But the autistic child doesn’t develop the same way. He doesn’t always talk at two. I didn’t talk at two. The normal child reads at six. I read at three. Differences in development work both ways—too slowly and too fast. But those same expectations are imposed on the autistic child. And what happens to parents when they see that their expectations are not being met? Often, they get angry.
And then the truth is revealed. These expectations only work with children who are not autistic, or who are not mentally or physically handicapped, etc. That’s because these expectations only came to be because of observations of normal children, not disabled children. Thus, when you’re working with or parenting an autistic child, you’re going to need to give some of your expectations up to understand him or her better.
I’m not saying that you should give up everything you expect from your child. But if your child cannot meet your expectations then they’re not going to suddenly learn out of the blue because you continue to expect them to know better. You should still expect things from your child—but base your expectations on what your child actually knows—not because he turned five three weeks ago. You should also try to teach those skills to your child if he doesn’t know them. But don’t expect him to pick them up on his own or just because you’re expecting him to pick them up.
Scott Bellini, a professional who works at the Indiana Resource Center for Autism, once, during a presentation, asked an audience member to come up and say something in Portuguese. The audience member could not. Bellini then offered $50 if she came up and spoke Portuguese. The audience member still could not. His point was that because she didn’t know Portuguese, there was no way in the world he could get her to speak Portuguese to him—no matter how much money he offered, or how much he expected her to know how to do it.
So what’s the second lesson that can be learned?
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Misbehavior or acting spoiled doesn’t necessarily mean that you are spoiled. That’s because it’s not your behavior that makes you who you are, it’s why you behave that way. I called the black man a jerk because I thought he was a thief, and I thought I was acting rationally.
If you know you are behaving badly or inappropriately but do so anyway, you may be spoiled. But if you think you’re behaving properly until your parents, teachers, or strangers scream at you for being rude, selfish, and inconsiderate, you might not be spoiled. You might just have autism or Asperger’s syndrome. That happens all the time to people with autism.
I’m now going to tell you about an earlier time in my life. It is not a specific event but a yearlong experience—preschool. Preschool is not mandatory the way regular school is, but many children are sent to it anyway.
I was four years old when I first went to preschool. I don’t remember much about what happened there. But here are my memories: when I went there on my first day, I didn’t want to be there. When I got to class, I would walk in, attempt to plunk myself down in a chair near one of the walls of the classroom, and just sit there, all alone, by myself. Then lunchtime would be announced. I’d walk in line with my class through a long hallway to a big room where we ate lunch.
I would eat lunch with a small plastic fork, trying to ignore the other kids, and then I would walk back to the classroom, and return to that chair. Finally it would be time to go home, and I’d go back into that big hallway to find scores of parents looking for their kids. I would walk around those scores of parents until eventually I’d find my mother.
I don’t remember learning anything, or doing much there, except that I wanted to go home.
This story is a confirmation of what I just talked about earlier—that to many autistic people, like myself, their development doesn’t have much to do with their chronological age.
To be more specific, this story tells us that it’s not age that tells us whether or not we’re ready to learn. Rather, certain “stages” of development need to be passed before you can “learn” anything. Since most of these “stages” have been passed by three, or four, or five, we assume that the child is ready when they are three, or four, or five. But if you are four and have not gone through the “two-year-old” stages, then you’re not going to be able to act like a four-year-old.
I was not ready to go to preschool even though I was four. In fact, it wasn’t until I was seven that I even expressed an interest in doing preschool-related material, when my sister started preschool.
As of this writing (10/2005), I have another sister currently in preschool. I was given permission to silently observe her for half a day. I got to see quite a bit, and I’m going to comment on what I saw. This observation enabled me to speculate as to why preschool is so difficult for kids with autism.
First, to many autistic individuals, the sensory impacts of being in the classroom are too much. The lights may be too bright. The constant noise of other kids is too much for the child’s ears. So even before the teacher has done anything, the child might be on overload, and this in itself is enough for a child to fall apart. If the child cannot even stand the sound of the voice of the teacher or the other children, he’s going to try to avoid them even if he doesn’t have trouble with social skills.
At the preschool I saw a constant war on isolation. No child was ever allowed to be by him or herself for a significant period of time, that is, any more than five minutes. If they were, the teacher would walk up to that child and start interacting with them. Or another child would walk up to a child alone and try to play with them. Or the teacher’s helpers would try to engage the solitary child.
I don’t know how many times this happened to me, but I can certainly tell you that at this preschool, sitting down in one place by oneself was impossible after five minutes. There would always be someone at each child, whether it was a teacher or one of the assistants, trying to interact with these kids. An autistic child would have wondered why such kids and the teacher were so insensitive to his wish to be alone. “Why can’t you just leave me alone?” he would be thinking, unaware that they are just trying to be friendly.
I noticed one girl who spent ten minutes doing nothing but moving a wooden train down a wooden track set. Why wasn’t anyone forcing her to be with someone else, I thought? The answer was quite simple. Ten minutes later she went off to play with someone. The teacher clearly knew this and didn’t get her in trouble. On the other hand, she approached another child who didn’t know what to do and started reading to her.
During free time the teacher had a project where every child gave her a plastic tube, which she connected to create a large plastic tube that she put around the classroom. Then, she announced it was time for "clean up," and the kids cleaned up. Then it was circle time, and after all the kids were seated in a circle, the teacher called up individual kids for “show and tell.” Interestingly, there were two boys who did not go to sit in the circle when asked—they kept playing—until the teacher coaxed them to join the circle.
Such things would infuriate an autistic person. Who are you to say I have to clean up? Is that any of your business? Why are you forcing me to sit in this circle against my will and watch other kids show things that I don’t care about? Why can’t you just leave me alone? Why do you have to spend time-sharing something with me I don’t want to see? Why do you care that I spend time with these kids?
All of these questions might be circling through an autistic person. He has no idea why he’s being forced to do those things by the “teacher.” To him, she is an unpredictable stranger who might just yell at him at any moment, the way he sees most people.
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At first glance, one could see that these are many questions that go through the minds of neurotypical teenagers. That’s because the cause is actually similar. The autistic person does not trust people, and believes he’s own his own, and thus does not feel like he has to obey anybody. He feels as if he has the right to make his own decisions, just like the teenager rebels against authority.
At the same time, preschool is like an elevated two-story building that, instead of lying on the ground, rests on constructed pillars that are on the ground. The pillars consist of assumptions that, should they break, so would the preschool.
The first assumption is that it’s better to be with someone than be alone. That is why everyone at that preschool was so relentless at getting the kids to socialize, even the other kids. However, most autistic individuals like being alone, so they see this negatively, just as you would be irritated by someone who was always in your face every minute of the day.
The second assumption is that the teacher is God, Der Fuhrer, Il Duce, Pharaoh, or whatever you’d like to call her. Preschool is a constitutional monarchy. It’s not an absolute monarchy because the teacher doesn’t have absolute power—her powers are dictated by the rules of the school. She can’t abuse the children but she reigns over the children. But it is a monarch’s dream, for the children are absolutely loyal subjects. They think of her as the queen, and obey her like the queen. Everything she told the kids to do, they did, and were even happy to obey her. She was good, and she was wonderful. A despot’s paradise!
This is connected to a third assumption, and that is, the assumption of universal trust. Neurotypical children have a sense of basic trust. To them, everyone is good and everyone is nice. That’s why they’re happy to obey. And that’s why parents teach young children to “never talk to strangers.”
The fourth assumption is that children are able to have empathy for other children. During show and tell, when each individual child showed his or her toy to the class, the class listened. The class was willing to be patient and not interrupt the child who was showing the toy. And those children, in turn, listened to the other children as they showed their toys. If a child did interrupt, the teacher asked the child to be quiet.
There’s also a fifth assumption here as well—that the child is able to learn the preschool-level material. I wasn’t interested at four, but when I turned seven, I suddenly was able.
At the age of four, however, I was not ready for any of this. So, when these assumptions were placed on me, I couldn’t meet them. My mother saw this and decided to take me out of preschool.
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In my opinion, that is the best solution. If a child is suffering in school, you should homeschool him if you can. However, I know that it is beyond many parents to do homeschooling. So here’s what I’ll say about helping an autistic child deal with preschool.
Hatred is a very powerful emotion in autism. If they hate something, or hate someone, then almost every attempt to get the autistic child to like it is going to make them hate it even worse. On the other hand, if they like something, they’re going to be willing to put up with certain things they don’t like if they like it enough. This principle works for younger and older children—I disagree with many policies at the daycare center I volunteered at but I put up with them because I liked working at the daycare.
And let us also heed the lesson of the Chinese finger trap. When the child doesn’t want to interact, many experts say you should “step up” the behavior plans and the discipline. In reality, this does nothing but motivate the autistic child to “step up” their unwillingness to obey you. Like a Chinese finger trap, the harder you push, the less likely your finger will get out of the trap.
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Next, the preschool teacher has to decide what her priorities are. What I think is ironic is that it is claimed that “you go to school to learn,” yet there is also a social side to school, and many parents get angry if they learn their children aren’t making friends in school. Is it really essential to try to get the child to make friends? Maybe it isn’t. Is it essential to try to get the child to sit in circle time? Yes, it is. But just because he sits in circle time doesn’t mean he’s going to listen to the child. However, you shouldn’t force listening. In fact, you can’t force empathy on people. If they cannot empathize, they will not empathize. The fact that you got him to cooperate during circle time is good enough, so that everyone else doesn’t notice him.
The preschool teacher also has to realize that if a child is not ready to learn the educational material, he or she is not going to learn it. It took me until I was seven in order for me to learn it. If a special curriculum suited for the needs of the child can be made, then it should. A child like that should ideally be in a special-ed preschool. If an autistic child is failing in a mainstream classroom, despite the efforts of the teachers, then he needs to go to a special-ed classroom, and if his parents cannot accept that, then that is not the autistic person’s problem—that is the problem of the parents.
Similarly, when you pursue friendships, do not try to pursue them in conventional settings if they are not working in those settings. If preschool is not providing friends for your child, don’t rely on preschool as a source of friendship. Try to get him involved in safe settings where he can make friends and the kids are not going to be meaning to him. Such examples are theraplay, or play therapy, or integrated play groups.
But history marches on, and after another failed attempt at preschool, and two years of being homeschooled, I returned to school halfway through the 1995-96 school year, at the age of seven, as a kindergartner. And I loved kindergarten. I didn’t hate a minute. And I remember why kindergarten worked.
What made kindergarten work?
First, the teacher was a nice, and understanding teacher. She did not say that I had to spend time with the other children. In fact, I ignored the other children. She let me work. I liked work. Work was something that I could do by myself, and I didn’t have to worry about getting rejected by my work.
Second, because I was much older than the other kindergartners, I was able to do much of the work perfectly. Indeed, I kept asking the teacher for more work to do, and she let me.
Third, I was now interested in “kindergarten” stuff. With my sister in preschool, she would come home and show her mother the projects she did. I wanted to do them now. And preschool isn’t really that different from kindergarten. And that’s why I was sent to kindergarten.
And finally, there was no sense of being forced to do anything. Yes, I had to sit in circle time. Yes, I had to leave when it was time to go. But I didn’t have to do the thing I really hated doing—being with other kids, and the kindergarten teacher also left me alone during free time.
After kindergarten, I continued to periodically visit my former teacher in the fall, and still do today.
So what lessons can be learned from these positive memories?
First, this is an example of what I said either—that whether or not an autistic child feels forced to do something is very important. While this is not true in every case, if an autistic person feels forced into something, and they don’t understand it, they will often resist. I did not feel forced in kindergarten; but I did in preschool. And even when I had to do something I didn’t want, I would do it because I respected the teacher.
This point is also part of a larger point—the need to understand, a need that, while is greater in some people than others, appears among most people, neurotypical or autistic.
It is my observation that most people, no matter who they are, have a need to understand what is going on around them. I also believe that this can be demonstrated by science, religion, and ancient mythology. In my opinion, one of the reasons why people have created religions is because it gave them knowledge of how things work prior to having scientific explanations for them. Even to this day people rely on religion to give them meaning in life.
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Autistic individual Temple Grandin, in her book “Thinking In Pictures,” has argued in her book: “Since religion answers questions that science cannot explain, people will always have a need for religion ever since they walk the Earth. Religion survived when we learned the Earth was not at the center of the universe.”
On a smaller scale, people have a need to understand why they are doing everything, even neurotypical people. This might seem like a surprise but it’s true. If a stranger walked up to you and said, “Give me your wallet, please,” would you do it or resist him? You’d likely resist him. That is because you don’t understand why you have to do that to please someone you don’t know.
But wait a minute here. I’m sure many of you in your minds are objecting to this. I don’t have a need to understand, you might be thinking. The situation you just mentioned above might never happen to me, so why does it count? If my friend wants me to do something, I go and do it. However, my child with autism resists the fact that he has to come with me, and has a fit, ruining it for me. Why is it that he resists but I’m willing to go?
In reality, you both have a need to understand. In this case, it’s because you understand why you have to go—because your friend wants you to and you like your friend. In that other situation, whether or not you’ve been in it, you would not understand.
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But your child likely hates your friend, and doesn’t understand why he has to go there. He does not have that sense of basic trust toward you, and for that reason he’s not going to do something just because you want him to do it. He has to have a reason that benefits him. This is not selfishness; this is a logical response of those who do not trust anyone else. It only appears to be selfishness because most kids pass this phase by the time they’re five, and are trusting everyone. But the autistic person does not.
Or he’s gone to the other extreme—trusting everyone too well, and getting taken advantage of by his attempts to obey people. Some autistic people will be so obedient that they’ll hit a teacher if a child asks them to—and get in trouble with the school, or even get thrown in jail.
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So, how is the need to understand usually met?
The need to understand can be met by motivation. Should the stranger go further and offer you $1000 for your wallet, you might accept because you want the money. Or you might still say no, because you still don’t understand why this person is being so persistent. Should you accept, you understand why you’re doing it—to get the $1000. You have an incentive to strip because of the money. Should you not accept, you don’t understand why he’s offering you the money, and that’s not a reason to embarrass yourself.
The need to understand can also be met by trust. This is especially true for younger kids who will do whatever you tell them to because you’re their mother, or their teacher. This trust also occurs between me and kids at the daycare as well.
Finally, the need to understand can also be met by force. A child who is misbehaving does not understand why the adult is enforcing a rule, and does not follow it. Then the adult threatens a punishment and the child obeys. If the punishment is undesirable, or causes suffering, then the child will obey. But if the punishment is not a deterrent, then the threat of punishment will be futile. But even if the adult gets the child to obey, that doesn’t necessarily mean the child respects the adult any more.
This is also important because if there is no understanding, then in some autistic kids, there will be fear and resistance. Because autistic kids do not understand why they have to do things that their fellow neurotypical peers understand quite well, they often resist, and this in itself is enough to cause a child to resist something and have a fit, even if the event is not causing them any pain due to sensory issues. I have resisted many things not because I couldn’t stand the smell or the noise, but because I didn’t understand why I had to be there. This was the case when I was forced to attend my cousin’s wedding at the age of seven.
So how do we try to resolve this problem? Create understanding, at the level the child is able to understand—no more, no less, if you know what that level is. One of the ways this has been illustrated is with Social Stories, a method popularized by Carol Gray. Social stories are a good way of explaining why something has to happen, and if successful, you can give an autistic child the understanding that they need in order to behave properly and not resist.
This is not to say that all meltdowns and resistance are due to a lack of understanding. Sensory issues and an understanding that is wrong (misunderstanding) can also be the cause. But they are sometimes the same issue. An autistic person may not understand why they have to do something because it hurts their ears or lights, which makes them resist. In these situations, however, just because they understand doesn’t mean they won’t resist. If something causes them pain, they’ll try to get out of it because of the pain, just as anyone without autism will try to resist someone who is beating them up even if they might understand why that person needs to beat them up.
For this reason, if an autistic child is resisting due to pain caused by sensory issues, or due to fear, a social story is not going to change that. You are not going to get a child to stop being terrified of fire drills no matter how many times he learns why they have to take place if he feels pain when they suddenly occur. When I was terrified of the fire drill in school, I learned as much information as I could as to why our school had them, but that didn’t stop me from feeling hurt whenever I heard the noise.
But history marches on, and after kindergarten, I went to second grade. That was hell, and so my mother pulled me out halfway through the year. I didn’t return to school until I got to fourth grade. And fourth grade was a successful year. The kids were not all nice to me, and once again, I made no friends there, but I had a nice teacher, which made the year successful.
What made her year so successful as well? That was because of mutual compromise. She agreed to honor me and respect me as a person, and overlook the minor mistakes I would make. She even started the first day of school by stating that she was ten times as forgetful as we were. When I heard that statement, I knew that year would succeed.
Probably one of the best things she did for me was her policy of applying logic to each situation. She would never just enforce a rule or deny someone something without giving a logical reason for it, and seemed to have indefinite wisdom and logic. She also acknowledged that something that was bad in one situation might not be bad in another situation. For example, when she gave us an assignment to write an autobiography, I asked if I had permission to write portions of it at home. This was so I could type it, because handwriting was difficult for me at that time. She said yes. Then she told the class a story of a student who had also tried to gain that permission, only to later learn the student had actually tried to not do the assignment at all. This shows wisdom on her part; the fact that a student in the past tried to get out of the assignment doesn’t mean I would, nor would she have to make it a rule that no student could do the assignment at home. And I didn’t betray her trust. Rather, I made sure she knew by showing proof to her that I was doing the assignment daily until she no longer needed proof.
Every night, I was required to read for a half-hour, and then write a summary on what I had written. Because handwriting was difficult for me, she let me type my daily summaries of the book, and I could give them to her typed.
Because of her methods, some kids tried to trick her into getting out of assignments. But she always caught them, and retained her wisdom at the same time. For example, she always let me leave the room without telling her when I had to go to various special meetings I had, such as a visit to the speech therapist or the social worker. On the other hand, two other children who asked to go to the library to do research only to just twiddle their thumbs on a chair for 90 minutes were not allowed to leave the room again without permission.
These examples illustrate that it’s your motive behind your behavior, not your behavior that determines your personality.
My fourth-grade teacher was also enlightened about certain issues children might have, even if they weren’t autistic. For example, she took it for granted that some children might have trouble taking notes—so whenever it came time to do note-taking, she wrote what she was saying on an overhead projector as well as saying it, to make it easier for us. She also constantly reminded us that if we needed more time, all we had to do was raise our hand and she’d give it to us. With these easy accommodations, she mitigated what could have been a very stressful situation for me.
She also acknowledged my right to be alone. In our classroom, we had neighbors we sat next do. A person’s desk would be next to someone else’s desk. On the other hand, I was given the right to sit alone with my desk without any neighbors, and I admired her for that. She would always keep me in the same place even while she moved her neighbors.
I’m not saying she was perfect. She didn’t do as much as she could have to stop kids from teasing me, after all. But she did something else—she would often let me be alone to protect me from teasing.
What can we learn here? Basically, that in some cases, the solutions to solve problems with autistic children really aren’t that difficult. I had a great year with her, apart from the teasing.
I’m now going to talk about another observation. In this case, I’m going to discuss an issue that takes place in school. While is an important issue for some, is not one of the issues usually discussed with autism and school, and not initially thought of when we think about the problems autistic kids face in school. It is, however, an issue that still affects autistic individuals.
First, I need to warn you that this observation is not autism-friendly. If you’ve got autism, or any autistic spectrum disorder, I would advise you to leave the room.
[Wait until everyone has left.]
I’d like to introduce this by giving you a background about some research I’ve done this year that is very useful for those who want to understand A.I.T.
All sounds, speech, music—that is, what we hear, is heard by our ears on different frequencies—
[NOTE: The following is a link to a recording of a real fire alarm, so be careful before you sound it if you are on a public computer or in a building with a fire alarm system—people might think the fire alarm is really going off if they hear it.]
--that are measured in Hz. Some sounds are on low frequencies, and some are on high frequencies. For tones, the pitch of the tone determines the frequencies it is going to be on.
[The fire alarm is silenced.]
All right, I’m going to stop now for an obvious reason. You have all been treated to a sound that terrifies the souls of many autistic individuals daily. You have just heard the sound of a fire alarm, one of many fire alarm sounds that are heard in schools all over the world when there is a fire drill. Compulsory suffering for an autistic person.
This was the sound of the alarm at the school I went to. The day I learned I was sensitive to sound again was the day we had a fire drill, and suddenly the sound I heard was not just an alarm but also a shock. I felt like I had been jolted by electricity. I will remember that feeling for the rest of my life.
Fortunately, I now am in an environment where I am not subject to such loud, sudden sounds, so my sound sensitivities do not affect me as much.
This year, however, I decided to go on a quest to try to see why the sound of the fire alarm is so terrifying. What I have found out might interest you.
When we hear things, our ears process them on different frequencies. These frequencies are measured in Hz, and whether or not the sound is on a high or low frequency depends on the tone or pitch of the sound. People who have sensitive hearing typically are not sensitive to all sounds equally—rather, they are more sensitive to some frequencies than others. Thus, the concept of the treatment known as Auditory Integration Training is to retrain the hearing to not hear those frequencies as well so that the person is less sensitive to them.
Sharon Hurst, an A.I.T. practitioner, has told me that one common feature of people with sensitive hearing is that they can hear between the 1-8 KHz range very well, and thus are sensitive to that range. She also has told me that most people who listen to hard rock music or play loud instruments have gone deaf at around 4Khz.
I’ve also discovered that, by using Windows Media Player 9 (music-playing software that runs on Windows 98 or higher) it’s possible to chart how high or low a song or a sound is on certain frequencies. Windows Media Player 9 has certain visualizations that you can turn on that are generated when a sound file is playing. One of those visualizations is called “Fire Storm” in the “Bars and Waves” section. This visualization allows the viewer to see these frequencies in the form of sound waves, which have the similar shape of an audiogram. I played the sound of the fire alarm on an MP3 format in Windows Media Player, and it showed me where that sound lies on frequencies between 31Hz and 16Khz.
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So now I’m going to show you what Windows Media Player revealed about the sound of the fire alarm.
Frequencies (Measured in Hz)
Fire Alarm Frequency Chart
The numbers on top represent numbers of frequencies measured in Hz, with the higher numbers representing higher frequencies and the lower numbers representing lower frequencies. And the loudness of the sound is represented by how high or low the wave is.
Now let’s take a look at this diagram and see what it shows. You see anything interesting? It starts here, goes down a little bit, and then there’s a peak between 2-4Khz. What this tells us is that this fire alarm sounds a lot higher at 2-4Khz then another frequencies. Now let’s remember what Sharon said about most kids having sensitive hearing between the 1-8 Khz range. And I’ll also add the fact that Sharon also has said that 4Khz is the frequency damaged the most in ears of those who listen to loud hard rock music or are exposed to loud noises frequently. When all of this information is stated together, isn’t it any wonder this sound, and sounds like this in other fire alarms, terrify an autistic child?
Now I’m going to tell you the final story of my presentation.
Since the winter of 2005 I have been volunteering at a daycare center in my hometown. In the summer I witnessed a neurotypical six-year-old girl revert to behaviors associated with autism.
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The problem was not just the fault of the daughter. The mother was equally responsible. But of course, only the daughter was punished.
So one day at the daycare center, in walk three children—two girls and a boy. The six-year-old girl sits down in a rocking chair.
I am busy playing with another child, so I continue my game and ignore them. Then I hear a loud screaming sound in the distance. I look over. It’s her.
She screams, “I want my mommy! I want my mommy!” One of the staff members says she will get her mommy. “I want her now!” It’s a bluff because I know it is extremely unlikely her mother is going to come back. No parent ever has before. I don’t look to see if the staff member left the room to ask, but her mother doesn’t come back anyway. I look back at the kid I’m playing with and we continue our game. While we keep playing, I try to tune out the screaming in the distance. When the screaming stops, I look at the girl. She is now silent and frozen, still sitting in the chair. Her face is filled with tears.
The game I’m playing ends. With the girl calmed, I approach her. We start playing. And she has a good time. She lightens up. And then, the mother walks in. I tell the girl her mother has returned, and she runs to her mother.
Her mother says to her, “You misbehaved. You did a bad thing and you need to apologize. Say you’re sorry.”
The girl looks at her mom and says, “No.”
“Say you’re sorry.”
“Say you’re sorry.”
The girl tries to get away from her mother, but her mother grabs her hand to stop her from escaping.
“We’re not leaving until you say you’re sorry.”
“Say you’re sorry.”
“We’ll stay here until it closes if you don’t say you’re sorry.”
“You know, everyone is hungry for lunch. Your sister wants to go home. So just say you’re sorry.”
I sit down in a comfortable chair and witness this, eyeing the clock. This goes on for another ten minutes. I am silent. Obviously I didn’t go off and lecture this parent, nor did I tell her I was going to castigate her in a speech.
“Say you’re sorry.”
“I’m sorry,” the girl says very softly.
“Say it nicely. Say it.”
While this is going on, her younger sister, a four-year-old, says to her mother, “I’m sorry, Mom. I’m sorry” constantly.
“You didn’t misbehave. Your sister did. She has to say she’s sorry. Now, do you want to go home?”
“Yes,” the younger sister said.
“Then tell your sister to say she’s sorry so we can go home.”
“I want to go home,” the younger sister said.
“You see? You’re hurting your younger sister. Say you’re sorry.”
“I can’t take this anymore. Say you’re sorry.”
“All right. We’re staying here until you say sorry. We won’t even go on the trip we’re taking this weekend. Say you’re sorry.”
So another ten minutes pass with the girl refusing to say sorry. By now she’s trying to get away from her mother and resorting to scratching her mother’s arm to get away.
“Say you’re sorry.”
Finally the girl, defeated, goes up to the staff member and says, “I’m sorry.”
Then they leave. On the way out, her mother looks at me and says, “Thank you for being with her.”
So what’s the lesson that can be learned? First, this demonstrates just how out-of-hand a situation like this can get. The mother and the staff members blamed it all on the six-year-old—when in fact the mother was just as much at fault as her daughter. Her daughter was wrong to talk back to her mother. Her daughter was wrong to scratch her mother. But her mother was equally responsible. In fact, you could say that the mother did it to herself. She didn’t come for her daughter, and then had to nerve to ask for an apology and to call it misbehaving. But all her daughter was doing was showing some emotion towards her mother, and she got punished. What is she teaching her child? Not only that her feelings do not matter, but showing love toward your own mother is misbehaving.
I’m not faulting the mother for not coming back to her daughter when her daughter had a meltdown. I am faulting the mother for making a big deal out of that meltdown instead of comforting her daughter and reassuring her that it was okay. I am also faulting her for asking her to apologize and then escalating it for twenty more minutes. Then she put her daughter on the spot by somehow making it HER fault that her younger sister was going hungry and that she didn’t go home. It’s the mother’s fault, not the younger sister’s!
As this shows, meltdowns are not uniquely autistic. This girl had no autism in her—yet she still melted down. But the process is still the same. The child is put in a situation they cannot cope. They are unable to escape, so they fall apart. Since autistic people are put in more situations they cannot cope with, they fall apart many more times.
You are going to have to listen to an autistic child if you want to prevent a meltdown. This might seem unthinkable, but is it really? Is it really worth fighting a child who is suffering if you could just compromise and accommodate the child? No.
To conclude, I can simply say the following. In my short life, which is still unfolding, and in some ways is just beginning, I’ve seen quite a bit. I’ve been through a lot. I’ve witnessed a lot of stuff. I’ve done a lot of thinking, made a lot of mistakes, made a lot of messes, but got through them. In some ways, I’ve done more things than other kids my age. In other ways, I’ve done very little. My life is not conventional. But it is still a life I enjoy, and a life that accommodates my autism.
Well, I’m going to stop here and answer any questions you might have.
[Postscript, written on June 6, 2006]: While I have just told a story in which I have portrayed a parent negatively, and do believe that how the parent handled this situation was wrong, this does not necessarily mean that this person is a bad parent. Parents, like all people, have good days and bad days, and often will get angry at their children. People who are angry get irrational--there is nothing wrong with this. Everyone has a right to let their anger out. For this reason, we should not entirely judge a person when they are angry, nor should we argue that if a person says something negative when they are angry, they truly believe it once their anger ceases. But it also means that after a person is done getting out their anger, they should try to understand what got them angry and to think about what can be done to prevent that anger from coming again, or to find another way of solving a similar problem in the future. For this reason, the intention of telling a story like this is not to insult this parent or parents in general, but rather to see how a problematic situation formed in the past so we can learn from it to help us in the future.
[Author’s note: Portions of this speech can also be found in the speech “Auditory Training: My Personal Experience and Thoughts,” “Understanding: The Free Therapy,” “The Role of Context in Defining Autism,” the speech “What to Do During an Autism Cataclysm.”]