Autism’s Appearance in Books and Film
Presented at the University of Wisconsin--Fox Valley on April 5, 2006.
[Author's note: Due to time constraints, this presentation was scaled down and shortened when it was presented live. Here, you can read this presentation as it was originally written, before I had to alter it when I was presenting on stage.]
Good evening. My name is James Williams. I’m seventeen years, and I have Asperger’s syndrome, or high-functioning autism.
In the scientific and medical community, disorders and syndromes like mine are generally defined by a set of symptoms or outward behaviors. If you look up “Autism” in the DSM-IV, you’ll find a list of things that autistic people do, and since autism is a disorder, the implication here is that these symptoms are an aberration from normalcy.
If a doctor or other health professional gave your child a formal diagnosis of autism, chances are he said that your child did x, y, and z in his office, and, therefore, he was autistic. A normal child would have done a, b, and c.
In other words, symptoms x, y, and z define autism, and every time your child displays one or more of them, this is further proof of his disorder.
Now how many of you can remember your life prior to your knowledge of autism and its symptoms and behaviors? Do you recall that bygone era when the term meant little or nothing to you? Do you remember a child or adult ever behaving in an antisocial or socially inappropriate or withdrawn way without your thinking, “Uh-oh, he must have autism. Has he ever been diagnosed?”
This might surprise you, but in my short life, I have seen almost every autistic symptom and behavior appear in situations where people do not think of or mention autism. Let me give you one example.
I attended an autism conference at a large convention center last summer, and there was another conference going on at the same time. It was a national convention for first grade teachers. Interested, I took off my name tag, hid my conference manual, and walked into one of the presentations that was a part of the first grade teaching convention.
The subject of the presentation was “Sensory Issues in the Classroom.” The speaker described issues she had seen in her years teaching first grade. She talked about kids who could not perceive their position in space, and frequently bumped into people. She talked about kids who did not know how to coordinate their bodies in their clothes or how to even find their bodies. She talked about kids who did not know how far away to stand from other people, and often could not respect other people’s personal space.
The speaker went further to explain that when a child has this problem, you should pull out a blanket and roll him in it or cover him with it, and this would help him coordinate himself. She also described how conventional arrangements in school serve to hinder the learning process. According to her, sitting in a desk for a long time hurts your ability to learn, and in fact, the human brain processes more information pacing around a room rather than sitting in a chair. She also pointed out the irony that teachers will often tell their students to sit still, even though that is literally impossible for most children, yet she could never tell an adult to sit still without being thought of as strange, even though it is easier for adults to sit still than children.
Does this sound familiar to any of you? It should. These are problems that appear among lots of autistic kids. And the proposed solution—covering or rolling a child in a blanket—is a practice done by many sensory therapists who work with autistic kids.
The topic was so akin to autism that another member from the autism conference was in the audience as well, her autism booklet out on her desk. When I asked her why she was sneaking into this speech, she replied that she wasn’t sneaking in at all. I told her that this speech was for a different conference, and she was amazed. She had thought it was part of the autism conference, but wondered why she couldn’t find it in her booklet!
What was surprising, though, was the fact that the speaker didn’t even talk about autism. She mentioned that she was a great fan of Carol Gray’s Social Stories, and proceeded to talk about their use in the classroom—but there was no mention of autism!
Finally, she did briefly mention autism—in the context of sensory overload--after giving a primer on how the five senses are linked to our brains and nervous systems.
If the so-called “autistic” behaviors occur in children who are not diagnosed as autistic, then these behaviors cannot be uniquely autistic. And in fact, on numerous occasions, when I attribute a certain problem I have to my autism, I am told, “Oh, everyone feels that way. You’re not unique.”
So what does this mean? Does it mean that autism is a farce, and that there’s no such thing? Or conversely, that no one is normal, and we’re all autistic? When I was in school and not getting the accommodations I needed, the teachers continually told my mother that “everyone is special,” that everyone had issues and challenges, and I was no different from anyone else. I was told by many people that there was nothing wrong with me. But obviously, there was something wrong with me.
In my opinion, neither position is right. Certainly autism does exist and must be addressed, but the way to address it is not necessarily by focusing just on outward symptoms and behaviors.
The truth is, while many people have extensively documented the symptoms of autism, there is another element to the issue that those people have forgotten. And that is, why exactly do those symptoms occur? No one behaves in a vacuum. Not even autistic people. When we see an autistic person behave a specific way, we see it as autism—but we also have to realize that there are reasons going on for why the autistic person is behaving like that.
Ask an autistic person why he sits alone at lunch in school. He won’t explain to you it is because of his autism. He’ll tell you it is because every kid is laughing at him or trying to push him off the bench. Ask an autistic child why he covers his ears when the school bell rings and he’ll tell you it is because the noise is unbearably loud. Is it autistic to try to avoid being ridiculed or to protect one’s ears against painful sounds?
Ladies and gentleman, autism is not a disease of symptoms. The behaviors we call autistic are not the autism itself—they are the responses of a mind and nervous system that are designed differently from the average mind and nervous system. It is the autism that produces behaviors—not the behaviors that produce autism. A spoiled, manipulative brat and an autistic child may resist everything their parents ask them to do, but the motivation is totally different—the brat might enjoy defying authority, but the autistic child fears to do something that will cause him intense pain and suffering. The autistic child is often making a logical response to a situation that he perceives as intolerable. If a normal person was faced with a similar threat of pain and suffering, he would act the same way the autistic person does.
The title of my presentation today is “Autism’s Appearance in Books and Film.” That is because now that I have argued that behaviors do not produce autism but vice-versa, I am going to show you four examples of autistic symptoms and experiences that appear in movies and books. In each example, the person exhibiting autistic symptoms or experiencing something autistic people have to deal with is not autistic. What separates the autistic person from the normal person is not behavior but the circumstances in which the behavior emerges. The normal person behaves like an autistic person under conditions of extreme stress. The autistic person also behaves the same way under conditions of extreme stress. But the conditions that put him under extreme stress are conditions that are considered normal by the average person.
There are two reasons why I am giving this presentation. First, the two movies and two books I am using today illustrate my own autistic ability to make connections and find associations that the neurotypical mind generally does not make. When I watched these movies and read these books, the first thing that came into my mind was that these characters were behaving like autistic people. Yet, it seemed strange that autism was not mentioned in these stories, and that many people sympathized with these characters. This was ironic to me--why were neurotypical people sympathizing with the weirdos in books and film, if they were so refusing to understand me?
Second, because many people are able to understand fictional weirdos versus real-life weirdos, we can use these fictional examples to help us understand the real-life weirdos—that is, autistic people—that we know in our lives, or, for someone who has autism, to learn more about himself. I will show you how I saw autism in these examples, and what can be learned from them. Interestingly, the way people deal with these characters is sometimes what would truly help an autistic person.
I’d like to start by asking you this one question. How many of you in this audience teach 3rd grade?
My first example is from 3rd grade literature. This book appears on reading lists all over the country for these grades. It is called “Ramona the Pest,” by Beverly Cleary. It is the second book in an eight-part series about Ramona.
Has anyone here read this book?
When you teach 3rd grade, reading becomes a vital part of the curriculum. You cannot get through 3rd grade without learning how to read a book. Students are given lists on where to find those books. Today, I am going to show these teachers, if there are any in this room, what they can learn from the types of books on those reading lists.
This book is about a girl named Ramona. She is five years old. This book was written in 1968, before autism was widely known.
First, let’s look at the title “Ramona the Pest.” The title suggests that she is a pest, so that means that she is constantly bothering people, and getting in trouble. Does Ramona consider herself a pest? No. This is stated on the first page of the book:
“I am not a pest,” Ramona Quimby told her big sister, Beezus.
“Then stop acting like a pest,” said Beezus, whose real name was Beatrice.
“I’m not acting like a pest. I’m singing and skipping,” said Ramona, who had only recently learned to skip with both feet. Ramona did not think she was a pest. No matter what others said, she never thought she was a pest. The people who called her a pest were always bigger, and thus unfair.
Ramona, sure of the fact that she is not a pest, cannot wait for her first day of school. The first day of kindergarten is about to start.
So Ramona finally gets to kindergarten, and meets her teacher, Miss Binney. To continue from the book:
“Hello, Ramona, my name is Miss Binney,” speaking each syllable distinctly as she pinned Ramona’s name to her dress. “I am so glad you have come to kindergarten.” Then she took Ramona by the hand and led her to one of the little tables and chairs. “Sit here for the present,” she said with a smile.
A present! thought Ramona, and she knew at once she was going to like Miss Binney.
Ramona listened carefully while Miss Binney showed another boy, Howie, to a table, but all her teacher said was, “Howie, I would like you to sit here.” Well! thought Ramona. Not everyone is going to get a present so Miss Binney must like me best. Ramona watched and listened as the other kids arrived, but Miss Binney did not tell anyone else he or she was going to get a present if he or she sat in a certain chair. Ramona wondered if her present would be wrapped up in fancy paper and tied with a ribbon like a birthday present. She hoped so.
So see what happens here? The teacher says one word, and Ramona complies. We the readers can see what is going on in Ramona’s mind. The teacher meant one thing, and Ramona thought something else. But Miss Binney does not see this. All she saw was Ramona sitting down for the present, and has no idea that Ramona took her words literally.
But isn’t that a hallmark symptom of autism? Taking words literally, and then defending them to the death? Yet here we see it in this literary character, and no one has mentioned autism. The word does not even appear a single time in the book. I have done Google searches for “Ramona autism,” and have found nothing on the Internet about it.
Then see what Ramona does? She goes on and on about a present that she is never going to have, and takes everything she sees as evidence that she is special and going to get this present, and even wonders what is going to be.
The misunderstanding continues. As written in the book:
Ramona wondered how long she would have to sit there to get the present. If only Miss Binney understood how hard waiting was for her!
Miss Binney gave a little talk about the rules of the kindergarten and showed the class the door that led to the bathroom. Next she assigned each person a little cupboard. Then she asked the class to follow her into the cloakroom to find their hooks.
Difficult though waiting was for her, Ramona did not budge. Miss Binney had not told her to get up and go into the cloakroom for her present. She had told her to sit for the present, and Ramona was going to sit until she got it.
Next Miss Binney taught the class the words of a puzzling song called the “dawnzer lee light,” which Ramona did not understand because she did not know what a dawnzer was. “Oh, say, can you see by the dawnzer lee light,” sang Miss Binney, and Ramona decided that a dawnzer was another word for a lamp.
When Miss Binney had gone over the song several times, she asked the class to stand and sing it with her. Ramona did not budge. “Ramona,” said Miss Binney, “aren’t you going to stand like the rest of us?”
Ramona thought quickly. Maybe the question was some kind of test, like a test in a fairy tale. Maybe Miss Binney was testing her to see if she could get her out of her seat. If she failed the test, she would not get the present.
“I can’t,” said Ramona.
So now let’s take a look at what has happened. All Miss Binney has done is teach the way a kindergarten teacher would teach, and she has lost Ramona. She has no theory of mind toward Ramona, just like Ramona has no theory of mind toward her. How many times do autistic people misunderstand what we say? Thinking that what they heard was the truth, they act on that misunderstanding. Look at how adamant Ramona is about sitting for this non-existent present. She won’t get up to the cupboard, and won’t get up to sing the anthem.
And Miss Binney is just acting like a rational kindergarten teacher, and by doing so she is making the situation worse, and feeding the misunderstanding.
Also notice another language delay that Ramona has—she not only takes things literally, but she also has a delay in processing language. Let’s think back to what Beverly Cleary wrote earlier: “She spoke each syllable distinctly.” This suggests that Miss Binney did the same when she taught her class the national anthem. Ramona, however, heard it wrong, and didn’t know what a dawnzer was. She didn’t say anything, so Miss Binney had no idea that Ramona misunderstood her. It flew right by Miss Binney.
I myself have this very problem. It is sometimes difficult for me to process what people say. I learn better by reading, and require closed captioning whenever I watch a movie. There was a Christmas carol I once heard at ten, yet I could not understand the words. I thought it went like this. “E sa yere en desi mal, Gah den singers raven hile!” I did not know what this meant. What was “desi mal?” And also, “hile” came from saluting Hitler—why did this song talk about hailing to Hitler?
What’s the actual song? It’s from “Hark the Herald Angels Sing.” It goes, “Peace on earth and mercy mild, God and sinners reconcile!”
But Miss Binney is still clueless. She’s forgotten about the present, and cannot connect the dots as to why Ramona refuses to get up. And Ramona is wondering why Miss Binney is forcing her to wait. Finally, the misunderstanding is revealed.
Ramona did not budge. Only Miss Binney could unstick the imaginary glue that held her there.
“Don’t you want to play Gray Duck, Ramona?” asked Miss Binney.
Ramona nodded. “Yes, but I can’t.”
“Why not?” asked Miss Binney.
“I can’t leave my seat,” said Ramona. When Miss Binney looked blank, Ramona explained. “Because of the present.”
“What present?” Miss Binney seemed so genuinely puzzled that Ramona became uneasy. “Tell me why you can’t play Gray Duck.”
“I want to play Gray Duck, but you—“ she stopped, feeling that she might be about to say the wrong thing.
How many autistic people have been in this situation? They try to say something, but not knowing what to do, they think they are going to do something wrong, so they stop.
Now the truth is coming out. But still, even after the misunderstanding is quite obvious, Ramona and Miss Binney are perceiving it through their worldviews. Miss Binney thinks this is a figment of Ramona’s imagination—she has forgotten what she said. Ramona wonders why Miss Binney is acting puzzled if she genuinely was going to give her a present.
The misunderstanding continues.
“But I what?” asked Miss Binney.
“Well, uh, you said if I sat here I would get a present,” said Ramona at last. “But you didn’t say how long I had to sit here.”
If Miss Binney had looked puzzled before, she now looked baffled. “Ramona, I don’t understand—“ she began.
“Don’t understand?” How narrow-minded is this teacher?
“Yes, you did,” said Ramona. “You told me to sit here for the present, and I have been sitting here ever since school started and you haven’t given me a present.”
Miss Binney’s face turned red and she looked so embarrassed that Ramona felt completely confused. Teachers were not supposed to look that way.
Miss Binney spoke gently. “Ramona, I’m afraid we’ve had a misunderstanding.”
Ramona was blunt. “You mean I don’t get a present?”
“I’m afraid not,” admitted Miss Binney. “You see ‘for the present’ means for now. I meant that I wanted you to sit here for now, because later I may have the children sit at different desks.”
“Oh.” Ramona was so disappointed she had nothing to say. Words were so puzzling. “Present” should mean a present just as “attack” should mean to stick tacks in people.
So see what happens? Miss Binney says something and promptly forgets it. She expected that Ramona could “fill in the blanks.” She thought that Ramona understood that this was the “here and now,” and that later she might have to sit at a different desk. Miss Binney was wrong.
This happens a lot of times with autistic kids. The teacher expects them to know something a neurotypical child would know, and then they wonder why the child can’t meet the expectation. Obviously, Ramona has a language problem. This is not how five-year-old children behave.
Equally ironic is that on the back of the book, there is the blurb “The author has a sure instinct for the thought and expression of five-year-olds.” What five-year-olds is that person talking about? Autistic five-year-olds? When my mother heard about that, she laughed and said that normal five-year-olds don’t talk like that.
When you heard this story, you saw how Ramona understood the situation. You also saw that everything Miss Binney did, Ramona got wrong.
With insight into Ramona’s mind, you, the reader, can understand that Ramona’s misunderstanding was not sudden—it was building over that time period. But to Miss Binney, there appeared to be no hint of a problem until she learned what had happened all that time.
In many situations, an autistic person misunderstands, and no one sees this. The way an autistic person misunderstands is often beyond the radar of a neurotypical person. When the misunderstanding is finally revealed, the neurotypical person wonders why the autistic person is so stupid.
I was eleven when I first read this book. Back then I was very autistic, and having trouble in school. A Ramona book had been read to me by my second-grade teacher, during a disastrous year. My mother was so fed up she took me out after winter break. I returned to school in the fourth and fifth grades.
In the fifth grade I had to read for a set time, and then write a summary of what I had read. It was called a “Reading Log.” I saw this book, and having remembered what the second grade teacher had read to me, I realized that I should read this book. After reading the first page, I was stunned. Ramona was just like me. She had autism! I misunderstood people’s language. I took things literally. Ramona did what I had done all my life. But for some strange reason, no one thought she was autistic.
Of course, the fifth-grade teacher did not see the epiphany that had taken place. Later, when he took our class to the library to show us the books we could check out, I ran to the shelf with the Ramona books on it. He caught me and said that I needed to read books that were harder. He then showed me how Ramona Quimby was too easy for me, and commented on my reading logs that it was. He then told me that I could not read another Ramona book for a reading log.
Little did he know that there is a lot more to reading a book than its reading level. Personally, I think teachers should read books like this, in order to gain more awareness of autism.
To the person who knows autism and accepts it, the existence of autism is taken for granted. However, as we know, there was a time when the concept of autism did not exist—just as there was a time when Asperger’s syndrome did not exist. But, like discovering a planet, autism obviously existed before we knew it existed. We just didn’t have a name for it.
This has thus led doctors and laymen alike in the autism community to debate whether or not various “historical figures” actually were undiagnosed individuals with autism. According to these debates, Einstein was autistic, Mozart was autistic, Thomas Edison was autistic, maybe even Jesus and the Buddha were autistic! And the people who make these claims are not proposing them without evidence—they point to specific “autistic tendencies” that did appear in those people.
And since autism undoubtedly existed before modern times, there must be examples of the autistic experience in the literature of the past. The example I am going to show here is from “Little Women.” Literature students know this as one of the great American novels. Dunst fans know this as a movie made in 1994 which was one of many movies that made a child actor famous. If you don’t know what a Dunst fan is, you’re not one.
Some of you know this already, but for those who do not, “Little Women” is about four sisters growing up during the Civil War in the North. Their mother, Marmee, is raising them alone as their father is fighting in the war. This story originated as a book, but it’s been made into several movies and a Broadway musical. Today, I will be reciting the film version of my example in the form of a story.
During the book, Amy, the youngest sister, gets into some skirmishes at school. Here is what happens.
On a snow-covered sidewalk in Concord, Massachusetts, three sisters—Amy, Jo, and Meg, are walking down the street. Amy is heading to school. Jo and Meg are going to work.
Amy runs to catch up with her two sisters. She asks her sister, “Oh, Meg. Must I go to school? I'm so "degradatated." I can hardly hold my head up. I owe at least a dozen limes.”
Jo does not understand what Amy is talking about. “Limes?” she asks.
Meg, however, has an idea. “Are limes the fashion now?” she asks her sister.
“Of course they are. It's nothing but limes now. Everyone keeps them in their desks, and trades them for beads and things, and all the girls treat each other at recess. If you don't bring limes to school, you're nothing. You might as well be dead. I've had ever so many limes, and I can't pay anyone back,” Amy replies.
Does this sound familiar? How different is this than the crazy fads of today on school grounds, such as Crazy Bones, Nike shoes, and Pokemon cards.
The original novel shows a portrayal even crazier. As Alcott wrote:
Why, you see, the girls are always buying them, and unless you want to be thought mean, you must do it too. It’s nothing but limes now, for everyone is sucking them in their desks in school time, and trading them off for pencils, bead rings, paper dolls, or something else, at recess. If one girl likes another, she gives her a lime. If she’s mad with her, she eats one before her face, and doesn’t offer even a suck. They treat by turns, and I’ve had ever so many but haven’t returned them, and I ought for they are debts of honor, you know.
“Debts of honor?” It’s amazing just how silly kids’ priorities now, even during a time of war like that one!
Equally amazing is that nothing has changed over 120 years later. Kids are still teasing each other over crazy things.
The story continues.
Jo thinks this is ridiculous. “Well, no wonder you don't learn anything at that school,” she exclaims.
But Meg is sympathetic. “I know how it feels to do without any little luxuries--
“But we are not destitute. Not yet. Here's a quarter. Marmee gave me the rag money this month.”
Meg gives Amy the quarter. Amy hugs Meg and leaves to buy her limes.
Jo walks to work. Her job is to read books to her elderly aunt. When looking out the window at her aunt’s house, she sees Amy standing at the front gate sobbing. Not knowing what is going on, she walks to see her sister.
“Is it father?” Jo asks.
It is not. “Teacher struck me,” Amy explains, and shows the cut on her hand. “He put the limes out into the snow.”
Jo and Amy go home. Beth washes Amy’s hand with a washrag, and Amy tells her story to Marmee. “May Chester said my limes must have been donated to Hope House. And then I said that she wouldn't get a single lime from me. And then she told Mr. Davis that they were hidden in my desk, and then he struck me!”
This makes Jo angry. “We ought to go over there and beat the tar out of him with his own stick!” she proclaims.
“Jo! We must not embrace violence,” Marmee explains, I'll write this man a letter.”
“That'll show him,” Jo replies sarcastically.
“All those lovely limes. I'm perfectly ‘desolated,’” Amy says.
“Well, I'm not sorry you lost them. It's a frivolous concern in times of these. You are more intent on reshaping your dear little nose than fashioning your character,” scolds Marmee.
Jo continues. “It's an appalling school. Your spelling's atrocious, your Latin's absurd--
“Mr. Davis said it was as useful to educate a woman as it was to educate a female cat,” Amy replies, hoping to get some sympathy.
“I really must strangle Mr. Davis!” Jo says, even more angry.
Finished, Marmee reads her letter. "Mr. Davis. What right have you to strike a child? In God's eyes, we are all children, and we are all equals. If you hit and humiliate a child, the only lesson she will learn is to hit and humiliate."
Then she looks at Amy and asks, “Amy, do you think you can discipline yourself to learn at home as Beth has done?”
Marmee continues. "I withdraw my child from your school.”
“It serves the scoundrel right,” Jo says.
“Jo will supervise your education,” Marmee concludes.
In my two years attending public school, in the fourth and fifth grade, I was teased by my fellow students. They didn’t beat me up physically, but they called me names, and I suffered social rejection. It’s painful, and any autistic person will tell you that if you are willing to listen.
When I complained about being teased, I did not receive any advice from the social worker, or the teacher. After being teased one day in the washroom because I lacked the ability to properly urinate in a urinal, I told this to my speech therapist, who promptly explained that that was not her business, and that if I was to discuss such issues, I had to wait until I was spending time with the social worker. I thought that was ridiculous.
I might have started it. Heck, I might have deliberately tried to get kids to tease me for some subconscious motive. But regardless, there was no one helping me. The people who helped me ended up making it worse. The school social worker believed that one taught social skills by scripting—which, of course, ignores the fact that social interactions are spontaneous, and you have to know how to change and adapt to the other person.
complained about teasing, I was told, “It’s just your misperception.” Despite
my desire for being alone, I was constantly persuaded by my fifth-grade teacher
about how nice my fellow students actually were. Sometimes he was right—and, in
fact, many kids were nice to me. But other times this was not the case, and my
teacher still made that claim. He denied teasing existed, and the mean kids
knew that, and knew how to not misbehave in front of him. This gave him the
illusion that they were nice.
But just think about that for a moment. If teasing is a delusion, or a fantasy, created by my imagination, then why does it appear in the context of a literary character created in the 1800s? While books and film are not entirely accurate, I doubt Louisa May Alcott would have created that story out of nothing. I think she actually was aware of the status quo in kid society at that time, and perhaps she had similar skirmishes as a child. How can we rule out the possibility that the teasing of an autistic child is real if we have examples like these?
And let's not forget the hundreds of books and movies written today this is just one example out of hundreds of books written today for children that also involve kids getting teased. Read a Goosebumps book by R.L. Stine. Sometimes a kid gets teased on the first page! Ever watched “High School Musical,” a movie that is a classic among countless children today? The whole plot is about two people who pursue their interests at the cost of being thought of as weirdos!
Isn't it crazy, even comical--that Amy would experience social rejection because of the quality of her limes? An autistic child frequently breaks a frivolous social rule, and then this gets him in trouble with the teacher, often for not paying attention. One time in class someone was poking me on the shoulder whispering insults to me, and I got in trouble for not paying attention. But the other kid got away. Marmee is right—limes are a frivolous concern in times like hers. But Marmee shouldn’t have said that just to Amy. If Amy is more intent on reshaping her dear little nose, then so is May Chester. Marmee should have confronted May and made the same point to her! Amy did wrong, but May started it.
What also makes this so unfair is the common scenario in which the people who are given the authority to make decisions are often the most unqualified. The teachers have the authority. Yet they often have no idea what's going on. Only Amy was there when May Chester rejected her. In fact, you don't even see what happened as the movie viewer--you are seeing it from hindsight just like everyone else in the movie does. But Mr. Davis, the authority figure, exercised his authority based on the only information that he had and he cared about--that Amy was focusing on something else when she should have been focusing on his teaching, and thus gave the punishment for not paying attention in that day--he struck her.
But, here's what I'd like to ask. How can Mr. Davis, other than the fact that he's in power, truly make an actual judgment on whether or not Amy needed discipline if he had no idea as to what was going on in the first place? And is it really worth it for everyone to get angry at Amy when clearly she did not maliciously try to hurt anyone, nor was anyone physically hurt as a result of her misbehavior. And if Amy was trying to pursue social acceptance, why doesn't the teacher help Amy receive that social acceptance so that he won't have to worry about her misbehaving in the future? And since May also did wrong, why didn’t he punish her as well?
But of course, if the teacher denies the situation happened, then there's nothing a child can do. That was the case in the fifth grade, when I would be constantly teased by children and the teacher denied it was going on, and even gave me false examples of how this teasing was the result of my "misperception" to prove his point. He also repeatedly partnered me with the same kid over and over again, even though we couldn't stand each other, and when I complained about her, he would say I made it up.
So what can we learn from this example? The autistic experience—of social rejection and being unfairly punished—existed long before the term “autism” was invented. And although teachers no longer strike students, they sometimes still show the same lack of insight that Alcott’s character showed during the Civil War era.
All right, how many of you teach 4th grade?
When I was in 4th grade, a book was released that became so famous that the characters are now household terms. It became a series, and is now a franchise. It is the Harry Potter series, about the adventures of Harry Potter, a young British wizard.
While Harry Potter has some original elements to it, there are many parts that are borrowed from other pieces of work. Giants, wizards, witches, trolls, dragons, misunderstood orphans, you name it—they were around long before Harry Potter was written.
But Harry Potter also has experiences that are sometimes similar to those of autistic children. First off, he’s a wizard, and that makes him odd among “neurotypical” people—in this case, Muggles. But he doesn’t know it for the first eleven years of his life. He thinks he’s a weirdo. And things happen that he can’t explain, because he doesn’t know he’s a wizard. Does this seem familiar? Autistic people constantly screw up and make mistakes they can’t explain, and if they don’t know they have autism, they don’t know what’s going on either. The first time I read Harry Potter, I realized that those experiences were similar to mine. And then when he learns he’s a wizard, he feels relieved—just like I felt relieved when I learned I had autism.
So when you are discussing autism with people who don’t necessarily know about it, Harry Potter is a good example because most people know about him.
This winter, I was asked by a school district in rural Wisconsin to speak to their 3rd, 4th, 5th, and 6th graders. I had not spoken to this age group before, but my strategy was that I would relate autism to a subject they knew. That subject would be Harry Potter, and here is what I told them:
Harry Potter is a British boy who, at the age of eleven, learns that he is a wizard by Rubeus Hagrid, Keeper of the Keys and Grounds and Hogwarts School of Witchcraft and Wizardry.
In Harry’s fourth year at Hogwarts, Harry Potter becomes the fourth champion in a tournament called the Triwizard Tournament. Part of the tournament involves hosting the Yule Ball, a dance which is held on Christmas Day in the book, or Christmas Eve in the movie.
Here is an excerpt from the book:
“Potter, the champions and their partners—“
“What partners?” Harry asked Professor McGonagall.
“Your partners for the Yule Ball, Potter,” she said. “Dance partners.”
“Dance partners?” He felt himself going red. “I don’t dance,” he said quickly.
“Oh, yes, you do,” said Professor McGonagall. “Traditionally, the champions and their partners open the ball.
“I’m not dancing,” Harry said.
“It’s traditional,” Professor McGonagall replied. “You are a Hogwarts champion, and you will do what is expected of you as a representative of the school. So make sure you get yourself a partner, Potter.”
So, Harry has to go to the Yule Ball and find a girl to be his dance partner.
And Harry is terrified of asking a girl to dance with him. As J.K. Rowling later writes:
Now that he had taken on a dragon, and was facing the prospect of asking a girl to the ball, he thought he’d rather have another go with the dragon.
Harry later comments:
“Why do they have to move in packs? How are you supposed to get one on their own to ask them?”
Harry has extremely mixed feelings about this. First, he does not want to do it, so when he eventually gets asked by many students if he wants to go to the ball with them, he instinctively turns them down, because he personally does not want to go to the ball.
But since he has to do it, he decides to ask the girl that he has a crush on. Cho Chang. She is a year older than him, an excellent Quidditch player, and extremely pretty. He finds her with her two friends and is initially paralyzed.
Writes J.K. Rowling:
He’d just have to ask Cho for a private word, that was all…he hurried off through the packed corridors looking for her, and he found her, emerging from her classes.
“Er—Cho? Could I have a word with you?” he asks.
All the girls around Harry started to giggle. She didn’t, though, but said, “Okay,” and led him away from her classmates.
Harry turned to look at her and his stomach gave a weird lurch as though he had missed a step going downstairs.
“Er,” he said.
He couldn’t ask her. He couldn’t. But he had to. Cho stood there looking puzzled.
“Sorry?” said Cho?”
“Do you – do you want to go to the ball with me?” said Harry. Why did he have to go red now? Why?
“Oh, Harry, I’m really sorry,” Cho replied, and she acted as if she meant it. “I’m going with someone else.”
Many books have been written and movies made about boys who do not know how to approach girls even though they are secretly in love with them, and have crushes on them. Have you ever been in a similar situation? Having to approach someone, feeling extremely embarrassed about it, not knowing what to say, and terrified that when you did say something, that person would reject you?
Now, I have a question for everyone—how many of you have friends?
I’m sure you all do. Now, even though you might feel a bit uneasy going up to a girl or a boy, do you feel uneasy going up to one of your friends and chatting with them?
Most of you don’t. So the uneasiness that you would feel is not toward everyone.
But what if you did? What if you didn’t have any friends, so that when you tried to approach anyone, you felt uneasy, and that person laughed at you because they saw your uneasiness?
You wouldn’t feel happy. But would you want to go and try to make friends with other kids if you felt uneasy when you approached another child? You wouldn’t. Why inflict that terror on yourself?
For people with autism, it’s not just approaching a girl that makes us feel uneasy. For many autistic kids, approaching any kid our age makes us feel uneasy.
Kids with autism don’t know the right thing to say in front of other people. They’re scared they’re going to get rejected. When they do say something, they are often rejected or teased by other people. And that’s why many autistic kids don’t want friends. Many autistic kids want to be left alone. To Harry Potter, Cho Chang is Cho Chang. To an autistic child, every child is a Cho Chang—someone who might reject him downright, say no for a legitimate reason, as Cho had, or accept him, which would be very unlikely.
Since many kids use stories like “I’m going with something else” as polite lies, the autistic kids don’t believe others when they say that.
Other autistic kids do not want to be left alone, and are looking for friends. Harry, after all, did have a crush on Cho Chang, despite his uneasiness with approaching her. Thus, these kids want to try making friends. But many kids who aren’t autistic aren’t very nice to them. They’ll even do naughty things and get in trouble with the school staff because their friends dared them to do it, and sometimes autistic people even get thrown in jail for crimes they didn’t know they committed.
Many kids were not very nice to me when I was in the fourth and fifth grades. I was thought of as weird. They’d say my shirt was on backwards when it wasn’t. They’d call me weird names like Baloney Face and Oscar Mayer Weiner Hot Dogs.
So my advice to those rural school kids was: If you know a child has autism, don’t try to approach them or make friends with them. They think everyone is a Chang, as I’ve said before. Now, that doesn’t mean you are a Chang, but they’ll thing of you as one.
I am using the term metaphorically for a person whom you want to be with, or have to be with, but are still terrified of approaching, despite your inner desire, and then, when you finally gather the courage to approach that person, you are rejected, regardless of the reason.
Autistic people’s minds are constantly wandering around, thinking odd things and making connections between different ideas. When I read that book five years ago, that was what I was thinking about.
That everyone I met was a Cho Chang.
For my final example I am going to show autism’s appearance in a film genre that you would never associate with autism. This genre is called the “chick-flick,” which consists of stories related to teenage girls and young women, and appeals to that audience. The chick-flick I’m discussing is “Uptown Girls,” starring Brittany Murphy and Dakota Fanning.
The year is 2003. It’s Thanksgiving, and I’m in Zionsville, Indiana, with my father and sister visiting my uncle’s family. I bring a bootlegged version of this movie that I acquire from file-sharing software. On Thanksgiving night, my sister and my two cousins watch the movie. With nothing else to do, I watch the movie with them. I think it’s going to be boring and irrelevant to my life—but it turns out to be such a powerful, emotional movie for me that I ended up crying halfway through it.
Uptown Girls is the story of Molly Gunn, the daughter of two famous dead rock stars. When they died, she inherited their fortune, and has never had to work in her life. She spends her days partying and clubbing in Manhattan. This all comes to an abrupt end, however, when her accountant steals her money and flees to South America. Now penniless, she must get a job and restart her life. She does—as the nanny of Ray Schleine, the 8-year-old daughter of Roma Schleine, the executive of a record company. Ray is so spoiled, fussy, and rigid that she alienates every nanny she finds, and her mother is unable to keep anyone to look after her. Molly is determined to break through, and finally succeeds, even though she is fired by Ray’s mother in the end.
Why was it so powerful? Well, you’ll soon find out. I’m now going to read you a scene in this movie, in script form. This scene is Molly’s first day as a nanny.
It’s a sunny afternoon in New York City. Ray attends a Catholic school, and school has just ended.
“Hi!” Molly says happily.
Ray is furious. “Oh, my god. You're my new nanny?”
“It's Ray. Nobody calls me Lorraine.”
“Ok, Ray,” Molly says. “I'm Molly. We met at my birthday party, remember?”
“By like a second.”
“By three-and-a-half minutes. I have to take my medicine at 4:26 and it's 4:18 right now.”
“We'll take it when we get home.”
“That's when I take my other medicine.”
Molly falls on something on the sidewalk and trips. Ray just keeps walking.
“The agency must really be getting desperate,” Ray says in sarcasm.
Molly gets up and sees a food stand at the street corner. She buys Ray a bottle of water to take her pills, and a fruit punch for herself. “I actually am uniquely qualified for this position, having had so many years to develop my skills as a people person,” she says to Ray.
Ray takes her pills.
“Mission accomplished?” she asks.
Ray sees Molly drink her fruit punch. Ray is disgusted with her lack of nutrition. “Fruit punch? Why don't you just drink cyanide? At least it's quick.”
Ray walks away. Molly is furious. Why is Ray so mean?
“God,” she states as she throws her empty can into a garbage bin.
They arrive at Ray’s house. Ray takes Molly to her room.
“Shoes!” Ray exclaims, reminding Molly that she has to take her shoes off before she enters Ray’s room. The room itself is completely clean, without a single inch of disorganization.
“This is your room?” Molly asks.
“There's no fooling you, is there,” Ray exclaims with disgust.
Molly notices a doll on one of Ray’s shelves. She walks up to it and picks it up. “Wow! These are so neat! I remember when there were only four models of this. She's beautiful. Look at her legs!” she says.
Ray is furious. “That's my doll! Put her back!” she asks, horrified that Molly is showing no respect for her things.
“How cool is this! Look at this little tea set!” Molly cries out happily.
This is it for Ray. “Hey, hey. You don't touch that unless I happen to invite you to tea.”
Molly remains working as Ray’s nanny. After a few weeks, Molly decides she wants to take Ray on a trip to Coney Island.
“We're going to go to Coney Island and sit in giant teacups and spin round and round in circles until we puke,” she announces to Ray.
“Are you on crack?” Ray asks.
Ray and Molly end up going to Coney Island. Before they enter the amusement park, Molly tells Ray they need to stop to eat lunch. They find a diner. Molly announces to Ray, however, that at this diner, she is going to have to eat a hot dog. Ray has never had a hot dog, and is furious.
"You have to eat one, Ray, or they're not going to let you into Coney Island," Molly lies, trying to get her to eat a hot dog.
"They're toxic, you maniac. They have dead rats and nitrates."
"Do you want to ride the spinning teacups or not?" Molly asks Ray.
They enter the diner, order their food and it comes. Ray looks at her hot dog with utter terror. Ray picks it up, slowly moves it to her mouth...
"Did you swallow?" Molly asks. "Swallow."
Finally, Ray swallows. Molly takes Ray's pulse.
"She's alive! She's alive! SHE'S ALIVE! THE OPERATION WAS A SUCCESS, LADIES AND GENTLEMAN! SHE'S ALIVE!" Molly cries out to everyone eating at the diner, totally embarrassing Ray.
I spent hours reading countless reviews on the Internet about this movie. Of the many reviews I saw, not one mentioned autism. They called Ray spoiled. They called her a hypochondriac. They even called her precious, or eight going-on forty. But they did not call her autistic.
When I saw this movie, I saw something different. I saw autism. But I also saw something else. I saw myself. In a child named Ray, I saw another child—the child I was in eight, the person that was me nine years ago. This movie hit home in a way that my cousins and my sister would not understand. If you saw me at the age of eight, you would see me someone who is just like that. Ray is not a fictional character to me—Ray is me. And I am Ray. That is why, halfway through the movie, I was in tears.
To me, she is not a spoiled brat; she is a child who is forced to find the ruling principles of her life on her own. With little structure given to her by her parents, and the fact that she is raised almost solely by nannies and school, she must create the structure she needs to develop. And this makes her look obsessive and rigid.
This was not only a powerful movie to watch, but a painful one to watch as well. I am constantly plagued by my own memories, feeling so guilty for all the mistakes I made, the people I embarrassed, and the bad things I did.
When I began this presentation, I argued that symptoms do not produce autism, but rather, autism produces symptoms. I also argued that no behaviors are universally autistic, but become autistic in their own context. The example of Ray illustrates this point. Most people think Ray is a spoiled brat trying to get her way all the time. But obviously she is someone who is struggling to find order in a chaotic and unstable environment—the way autistic children cling to routines and rules to find stability in their world. One set of behaviors appears in two types of children.
Like Ray, I was also obsessed with time at her age. I remember being obsessed with time because of control. Time was something that was always under control. I was not in control of time's movement, but the movement of time was predictable. There would always be a time each day when it was 4:00 p.m. There would always be a time each day when the sun set. When I went to school, I always came back home for lunch at 11:30. Eventually there came a time when my food had to start cooking at 11:00 and be on the table at 11:30. Imagine if you will, after being introduced to the predictability of time, the first time I learned when time was not as predictable as I thought! And what was that? The first day of daylight saving time. When I learned about the clocks changing, I thought to myself, "What is going on here? Why is time not the way it was before?" I had a fit, which seemed crazy and unreasonable to other people, who did not understand my connection to time.
Looking back, I realize that I didn't trust or feel enough of a connection to people to look toward them to provide stability in my life. Like Ray, I distrusted other people, and I relied on things such as time to provide order in my life. As soon as Ray made a connection to Molly, some of her autistic traits disappeared. The same is true of a child diagnosed with autism. Provide some stability, predictability, and human connection in his life, and he will not behave as "autistic-like" as he once did.
Storytelling is a universal pastime that dates back to the dawn of mankind. For millennia, people have told tales to one another. Stories are very powerful. They teach us lessons about life, and at one time, explained universal mysteries about how things worked. Books and movies are two of many modern ways stories can be told.
advantage to a story, however, is that you can present ideas that are obvious
in the story that might not be obvious in real life. A person might be able to
understand the underdog in a movie, even though he or she is the school bully.
You can sympathize with an eccentric person in a book, even though you know a
person who is equally eccentric in real life and want nothing to do with him.
Jesus often used stories and parables to explain his lessons, and when he did,
his points made more sense. Although there are a lot of impossible things
occurring in novels and books, we also often learn about individual, societal,
and universal fears, hopes, and dreams in books and novels. Finally, I'd like
to point out that many filmmakers and authors--both of which tell stories in
their own unique ways--have sometimes been viewed by many people as some of the
strangest individuals that have walked the Earth, and have exhibited behaviors
that can be considered, with some analysis, to be "autistic tendencies."
Well, thank you for listening to my thoughts. I’ll now answer any questions you have.
[Author's note: Two examples from this presentation originally came from other presentations. The "Uptown Girls" example can also be found in the presentation titled "Understanding: The Free Therapy," and the "Harry Potter" example can be found in the presentation titled "Harry Potter and the Chamber of Autism."]