“What To Do During An Autism Cataclysm”
Good afternoon. Today we will be talking about autism. My name is James Williams, and I have a type of autism that is called high-functioning, or Asperger's syndrome.
What is autism?
If this was a spelling lesson, I would proceed with this answer.
Autism. A U T I S M. Autism.
But here’s another way to answer that question.
Briefly, it refers to a series of abnormal mental perceptions and abilities that cause behaviors and outward responses that seem abnormal but are actually quite normal in the context of those perceptions and abilities. Autistic individuals also process information differently from normal people. Therefore, autistic individuals often make decisions and judgments that are hard for normal people to understand.
Autism typically involves a certain level of disability, difference, and sometimes giftedness. Otherwise, the individual would not have been diagnosed. However, there is often a wide range between those disabilities and abilities. This is why autism is called a “spectrum” disorder. Some autistic individuals have a photographic memory; others don't seem to remember anything. Some autistic individuals can talk; others are nonverbal. Some can talk but do not have useful language--that is, they quote from movies, rattle off lists of Pokemon characters or street names, but cannot engage in a conversation or state an original thought. Others have a grasp of language that is superior to the average individual.
A person with autism may not be able to make proper eye contact with someone else. Others might make eye contact very well. In the sensory field, you have autistic individuals who crave sensory stimulation to the point where they want what some autistic people call “deep pressure.” An autistic man walked up to another autistic man at a conference and jumped on top of him, asking for deep pressure. Others can't stand the slightest touch from another person; it feels as if you've attacked them, or even stabbed them with a sword.
But what do all autistic individuals have in common? Three things.
One, they often have a wide disparity in their abilities. They will excel beyond normal expectations in certain fields, but will be lacking the ability to do other things. The famous autistic animal psychologist Temple Grandin said that when her abilities were tested a few years ago, she scored in the highest categories in visual areas but scored at the second-grade level in auditory processing.
Two, autistic individuals will have at least some inability to do everyday things that normal individuals do easily; as I have said earlier, otherwise the autistic person would not have been diagnosed.
And three, they all have a perception of the world that is different from yours, mentally and physically, and their different experience of the world shapes their worldview. It is also this perception that is the underlying cause for all of their autistic symptoms, behaviors, and ways.
The third point is also important as it exposes a myth in certain beliefs toward autistic teaching that I'll explain later.
Recently, several theories have been proposed to explain the causes of autism. I could now continue to talk to you about the theory that states it is a novel form of heavy metal poisoning. Or that it is the result of a gluten and casein allergy. But I'm not going to do that, because I'm here to talk about the psychological aspects of autism, and how daily life affects the autistic individual.
Let me remind you that what I have said above, I didn't always believe.
But my beliefs toward autism were not the result of scientific experiments. They were the result of me sitting down and thinking. Sitting and thinking was also something that Einstein was famous for doing.
If you asked me what I thought autism was when I was nine, you would have gotten the response that it was a way of understanding things that was different from the understanding normal people have and having special needs that normal people do not have. This was based on what my mother had explained to me while we wrote The Self-Help Guide For Special Kids and their Parents, together. That book is available on Amazon.
If you asked me what I thought autism was when I was twelve, you would have gotten the response that it was a defense against an illogical world; not a disorder at all. This was based on stories I had heard about autistic children who, in feelings of frustration, pretended to be autistic in order to receive recognition of their disorder.
When I look back at my theories of the past, I see that they are both correct in their own contexts. Those theories fit the things I had been discussing back then, and still fit those things today.
Now, just as there are many ways one can explain autism, there are currently many ways one can treat autism. One could talk about the physiological cures of autism, such as chelation to get rid of the heavy metals, or perhaps a gluten-free/casein-free diet to help change the behaviors. One could talk about the wonder drugs that have been scientifically proven to suppress autistic symptoms overnight. And one could talk about why other experimental therapies like theraplay, which helped me a lot, by the way, are not yet proven scientifically using a double-blind placebo-controlled peer-reviewed study, and therefore should be avoided at all costs.
However, you’ve probably tried many therapies, and although many of them have helped, autism is still a presence in your child’s life and in your household or classroom.
As parents, and as teachers, the knowledge that you need the most is not the latest discoveries made about how autism is a digestive disorder, or a disorder of the brain--but to learn about what to do in the event of a cataclysm. In other words, when something happens with those children you work with or live with, and you have to respond, and when you might not necessarily know why that autistic child is acting the way he or she is.
You are living and/or working with autistic people daily, in your house or in your classroom, or both.
You are working with children who fall apart because they can't stand the noise of the school bell or perhaps even the sound of a fluorescent light or an eyeblink. You might be living with a child who bites pieces off his shirt for oral stimulation or who purposely crashes into walls because he has no sense of where he is standing in a room. The five senses in an autistic person tend to be hyperacute--the person hears, sees, tastes, feels, or smells things too strongly, and therefore, avoids strong sensory experiences--or hypoacute--one or more of his senses is underdeveloped and therefore he craves strong experiences that stimulate the underdeveloped sense or senses.
The first thing that you should do whenever an autistic child is acting mysteriously is to try to understand that child. But instead of trying to understand it from your point of view, try to understand that child from his or her point of view. Obviously, this is easier said than done. But it is worth it because when you understand a situation from the viewpoint of the child you are working with or raising, you can find a solution that benefits not just yourself but the autistic child as well.
So, I'm now going to tell you several stories of illogical behavior, performed by autistic and non-autistic kids. When you hear these stories, try to consider why it is that those children behaved that way from an autistic perspective. Some of these stories are true, and are stories from my own life as a person with autism. Others are based on observations my mother, Joan Matthews, or I myself have had when working with young children. One is originally adapted from a book. However, all of the names of the individuals involved have been changed to protect their identities and their privacy.
Our first case is an example of someone who has limited language abilities, and does something that drives her sister crazy. This story is originally adapted from the book "Beezus and Ramona," by children's author Beverly Cleary.
A four-year-old girl named Judy is sitting on the couch with her sister Samantha. It's Samantha's birthday and she’s going to have a birthday party in their house in 2 hours.
Samantha is reading the fairy tale Hansel and Gretel to Judy. After she finishes reading, Samantha goes off to her room and prepares for her party. Meanwhile, Judy starts to engage in imaginative play. When Samantha walks back into the living room, she sees that Judy has taken slices of bread, broken them into pieces, and thrown them on the floor.
After Judy is asked to stop throwing bread crumbs on the floor, she decides to do something else. She goes into her room, takes her rubber doll, and throws it inside the stove in the kitchen. Unfortunately, Samantha's cake was cooking inside the stove at the same time, so both the cake and the doll are destroyed.
Now, Judy is not autistic. But change Judy's age--make her eleven instead of four--and many people would think that Judy was autistic.
And now you can ask yourself, what do you do in this situation, as a parent? You could actually do several things.
You can tell Judy to go to her room for ten minutes for a time-out for bad behavior.
You could say, "Judy, that's one," after she throws the bread on the floor, and "That's two" after she burns up the doll, then give a punishment if there is a "three."
You could also do what a lot of parents do without necessarily admitting it: You could scream and yell and shout, "How could you be so stupid???"
But in my opinion, you should ask yourself--Why did Judy throw her doll into the oven and throw bread on the floor in the first place?
Does anybody know?
Judy was re-enacting Hansel and Gretel. That’s what the imaginative play was all about. The bread on the floor represented the bread crumbs that Hansel threw to make a trail, and the doll represented the witch that Gretel threw into the oven.
Although Judy was incapable of understanding the consequences of her actions, doesn't her behavior seem logical when it is regarded as imaginative play prompted by a story she had just heard, rather than the hopeless act of a hopelessly disordered brat?
So what do you do about this? You try to find a way to allow her to engage in imaginative play safely and under the direct supervision of someone who is more mature.
Now here's another example. An autistic child, Mike, has a bad habit. He's taking his earlobe and putting it inside his ear over and over again. He's screaming and moaning once every several minutes. Sometimes he gets very groggy and nods off to sleep.
During group time, Mike's aide forces him to listen to a recording of the alphabet song in order to teach him the alphabet. He screams through the whole thing and tries to hide under the table. Mike's aide pulls him up by the shoulders to get him back in his seat, but he lets his body go limp and lifeless. As a result, he does not learn about the alphabet.
Put yourself in the aide's shoes. You have no idea how to deal with this child. His IEP states that he is to participate appropriately in group time with 80 percent accuracy.
Yet it is impossible to get him to follow basic social skills. How are you going to get him to do what is expected of him on his IEP?
First, you should ask yourself what I’m going to ask this audience. Does anyone know why Mike is acting this way?
The child suffers from severe sound sensitivities and he puts his earlobes in his ear to reduce the noise and to soothe himself. He screams every minute because he cannot stand the pain of a loud noise every minute. He suffers from terrible insomnia, and cannot sleep at night because the sounds cause his nervous system to remain in a chronic state of vigilance which prevents sleep. This is what makes him very tired every waking moment. And that's why he uncontrollably falls asleep during the day. And he can't stand the sound of the alphabet song so he hides under the table because it is not as loud down there.
See how one thing leads to another?
Now let's add another element to this story. The child was punished and learned he couldn't put his earlobe in his ear. That's why he started hiding under the table. One coping mechanism was taken away, so he was forced to make do with another.
So what is the solution here? First, realize that this child needs help, and give him that help. Don't impose behavior plans on him in an attempt to make him behave normally while the inner terror remains. Change his environment. See if he can wear earplugs. Give him headphones. And try to get his parents to give him a noiseless environment so he can feel safe enough to fall asleep at home.
You could hold him in his seat and restrain his arms so that he can't put his hands over his ears or fall out of his chair.
You could call his parents and recommend that he be put on medication, if he isn't on one, or several, already.
Or you can find out why this child is falling apart and create a situation for him that he does not resist and that is actually educational for him.
These kinds of adjustments might seem easy and straightforward. Yet not all parents and educators who work with autism are willing to adapt the environment for a special need.
And we need to remember that what might be causing Mike’s problems is not necessarily going to be the reason why another child might have a similar problem. For example, Mike’s problems of insomnia are caused by his sensitive hearing. But there have been studies published that suggest that autistic people internally have a body clock that is pushed back later than non-autistic people, thus keeping them wide awake at night and preventing them from sleeping at a conventional bedtime. According to this theory, autistic people are night owls who just cannot get to sleep when we ask them to.
This could be what causes insomnia in other autistic kids. And in that case, the solution is different. What determines whether or not the solution to a problem will be effective is knowing why an autistic child behaved the way he behaved, not just knowing the behavior. There are numerous reasons why an autistic person could be performing a single behavior. And the right solution is different depending on that specific reason.
But even today, many parents and educators are urged to extinguish all autistic behaviors, no matter how logical they are in the context of the child's experience. And yet, many problems can be handled with simple flexibility rather than rigid rules and goals.
I'm now going to tell you a true story in which an autistic child was acting rationally but got in trouble because the professional was unwilling to violate the rigid goals of an IEP, and was unable to think outside the box of normalcy.
The scene is a self-contained classroom in a very affluent suburban elementary school. The room has six autistic children and seven adults present—the classroom teacher and a one-on-one aide for each student. In this room, the highest-functioning student is a fifth-grader named Kit, and because she is so high-functioning, her IEP states that she is to be given tasks to complete independently. This is to prepare her to be mainstreamed the following year.
One day her one-on-one aide is at a meeting, and a visitor, who is getting her special education type 10 certificate, is observing in the room. The classroom teacher asks the visitor to be Kit's substitute aide.
The first thing Kit does is to go and get her favorite puzzle, then she presents it to the guest, whom I'll call Jane.
"You play with Kit?" Kit asks Jane.
"Fine," Jane says, touched by this show of social interest.
"We gonna have fun!" Kit says.
And so they do. Kit hands Jane a piece of the puzzle, which Jane puts into place, then Jane hands Kit a piece of the puzzle, which the girl puts into place. Each time a piece is correctly placed, both student and visitor laugh and smile.
Suddenly Kit's regular aide bustles into the classroom, frowns, and scolds Kit. "You're supposed to put the puzzle together by yourself, Kit. You know that."
Then she says to Jane, "I'm so sorry if she inconvenienced you. It's states on her IEP that she is to complete her work, including puzzles, independently."
The aide turns to Kit and says very sternly, "Kit, now take out your schedule and tell me what you're supposed to do next."
Kit takes out her schedule, but suddenly becomes nonverbal and noncompliant.
She babbles and grunts, and refuses to read the schedule. The aide asks the visitor to please sit over by the wall. When Kit tries to follow her, the aide tells Kit to sit down or she will lose a point. When Kit still doesn't comply, the teacher and the aide surround Kit's chair with six-foot-high portable room dividers to prevent her from seeing the visitor. Throughout the day, every time Kit tries to interact with the visitor, she is reprimanded and has a point deducted. By the end of the day, which is a Friday, all the points are counted up, and students who have earned a certain number of points are allowed to go to a classroom party.
For the first time in the entire school year, Kit does not have enough points to attend the party, and so she is forced to sit behind another partition with the four other students who were also forbidden from attending the party. The one boy in the class who did have enough points spent the entire time under his desk, refusing to eat the party food (a corn dog) and refusing the watch the movie that was shown during the party. The visitor was chided for disrupting Kit's schedule and for making her lose points during the day.
Now, how many of you think that the professional--that is, Kit's aide--was rational in her attempt to make sure the rules were strictly followed?
This is an example of something that, in my opinion, a teacher should not do. In this case, the autistic individual did nothing wrong. She was responding in a normal fashion to the attention of an adult. It was the educational system that insisted that a student behave in a certain way when the circumstances warranted an entirely different response.
It is ironic, after all, that an IEP would try to foster independence in an autistic child. As my mother often says, autistic children are born independent. They need to become socially connected and interdependent, as Kit was instinctively trying to do. They need to learn reciprocal play, as Kit was attempting to do.
But the autistic student was considered wrong, because she did something on her own, and because she was autistic. And unfortunately, the aide was bound to a set of rigid rules that lost sight of the child she was supposed to be helping.
This is an example of what I call "regulas gratia regulatis," in other words, "rules for rules' sake."
When I presented this speech to a group of educators in Chicago, I told them, “As an educator working with autistic people, you need to think of rules not as laws to be obeyed because they exist or because they come from scientifically tested studies, but as logical conditions that exist for logical reasons. You can't run a red light because that might hurt somebody. That's a logical reason for a rule.
However, if the logical reason that the rule was made for doesn't exist in a given situation, you have to be willing to bend or suspend the rule temporarily if it is being used in an illogical fashion. In this case, there's nothing wrong with encouraging Kit to do a puzzle by herself. But there was also nothing wrong with allowing her to work on it with another person. The social interaction that she tried to achieve with the visitor was as valuable as the educational experience of completing the puzzle by herself.
This advice can apply to parents at home with their autistic children. As parents, you need to stay flexible. Don’t automatically take a star off the behavior chart or take away a privilege or start counting your child down when he exhibits a behavior that is considered unacceptable according to the home behavior plan you got from the local therapist. Try to see if his behavior is actually logical in the first place. These kinds of punishments, which are supposed to modify behavior and lead to wise choices, often precipitate the defiance and the breakdowns you are trying to avoid.
Now, consider another story. It’s your job to tell me what's the right thing to do.
You are helping out at a daycare facility at an autism conference, and it's located inside one large room. It's against the rules for a child to leave that room. However, there's this child named Pete who’s got severe sound sensitivities. He cannot stand the noise in the room and tries to leave. His sensitivities are easy to detect--he's got his hands over his ears every minute he can.
What do you do?
If you can, take the child out of the room for a walk. You acknowledge that the rule about not leaving exists for the child's safety, but since you will be supervising him, you will protect him from danger, and so it is all right.
My mother and I have been asked to arrange the daycare facilities at several autism conferences, and when this happened in a real daycare facility, the staff refused to let her take the child out of the room. It was against the rules. Period. And so the child spent most of the day moaning, crying, covering his ears, and falling apart. Many other children had horrible fits that day. One child, Jennifer, lay down on her stomach and started kicking and screaming.
When my mother complained to the staff, they told her that they were not able to cater to every child’s needs. The kids needed to stay in one place so they could maintain control over the group.
Then, when my mother spoke to Pete's mother, the mom said, "Oh, he puts his hands over his ears all day. He’s not sensitive to noise; it’s just a bad habit. Just ignore him and he'll be fine."
However, he wasn’t fine. He was miserable the next day as well, every single minute. When it was finally time to go home, Pete was in a state of nervous collapse. If the rules had been only a little bit more flexible, Pete wouldn’t have had to suffer so much while his mother was off learning about how to improve his life.
Another area of inflexibility that causes autistic cataclysms revolves around expectations. Normal children tend to develop skills at certain times in their life. This, in turn, conditions the minds of parents and professionals into thinking that by a certain age, a child will be able to do something.
Expecting something because it is normal--even taking for granted that it will happen--is not a crime. It is human nature, and, as was shown by Ivan Pavlov with his famous salivating dogs, the nature of animals as well. Parents and professionals--particularly behaviorists—expect children to develop in a specific way.
It eventually becomes hard-wired in the neurotypical adult mind that a child will walk by the time he is two, start to talk by the time he is two-and-a-half, and so forth.
And so, parents have strong expectations that they impose on their children. And somehow, if they are normal, they meet the expectations of their parents.
But if they are autistic, they will be unable to meet some of a parent's or a school's or a therapist's expectations. And thus, people gets angry at them. My parents wondered why I as a nine-year-old could not tie my shoes; in fact, when I was five years old, my Montessori school teacher made me walk through heavy snow with my boot laces untied to "teach me a lesson. She felt that I was not trying hard enough to learn how to tie my shoes. To this day, I still wear Velcro shoes for everyday activities.
More problems arise with certain treatments that parents try to do to get their children to meet that expectation. Some parents will just do nothing, and think that if they just enforce the skill in the child’s head, the child will somehow magically be able to meet their expectation. But other parents will put their child into some sort of behavior modification plan so we can punish and reward him into doing the desired skill. If he displays other behaviors that are his own attempts to develop skills—for example, become obsessed with printed words as a form of communication because his speech centers don't function—many therapists would advise parents to forbid reading and force him to verbalize because that is the "normal" thing to do.
Yet many of these “weird” things are, in fact, his way of developing, because he is not normal, and will not develop normally, and you are doing more harm than good by getting rid of his own behaviors.
I can give a speech and I can answer questions from an audience—things that normal seventeen-year-olds do not do—but frequently I cannot determine when people are done talking in the middle of a conversation, and so I interrupt. At my age, I'm expected to wait my turn to speak and to know not to interrupt, but I cannot tell when someone is done. Some people think of me as being rude, but the fact is, I can't figure out when it's my turn, regardless of whether the rest of the sixteen-year-olds in the world are able to tell when it's their turn. The problem is not with my manners but with hearing, auditory processing, and perception.
Expectations become even more problematic with autistic individuals who show great gifts and talents in a few narrow areas while being backward and almost retarded in every other area. As I mentioned above, I can write a speech or structure a novel, but I find it difficult to keep track of my things at home.
Normal individuals can also get angry about expectations in situations unrelated to autism. When my father and I traveled to London, we asked for water when we ate dinner at a restaurant. We expected that water will be given for free, as it is typically in restaurants in America.
Wrong. We're given a 1-liter bottle of Evian water to share, and it costs 3 pounds. At current exchange values, that was 6 dollars. The grocery store across the street sold the same water for 50 pence, or 1 dollar. When things happened contrary to his expectations, my father was furious.
But why did we expect water to be free in the first place? There we were, three thousand miles away from home, in another country. We should have been open to the possibility that things would be different, and we should have asked before ordering.
I am now going to demonstrate something that is not autistic-friendly. If you are autistic with sensitive hearing, you should leave the room now, or close your ears.
Now I am going to discuss another aspect of autism. And that is the importance of understanding.
Most people, even normal people, have a need to understand what is going on around them at all times and in all places. Many fights and misunderstandings, especially with autistic children, boil down to the fact that the child does not understand what you want him to do, and he instinctively fights and resists you.
This might seem crazy to some of you. When you were children, you obeyed your parents without needing to ask why. But the fact is that you basically understood what they wanted you to do, at least on some level, and so you obeyed them. And you trusted them as well. So even if you didn’t understand what they wanted you to do, you still knew that whatever they said was the right thing for you to do.
There are times and situations when you understand what a person wants you to do, but you openly defy them because you don't agree--for example, a rebellious teenager may understand that it is necessary to get eight hours of sleep but refuses to get to bed at a decent hour. Antiwar demonstrators may understand why their government invaded another country but do not accept or agree with the government's reasoning, so they take to the streets.
Although there are many times an autistic person will defy you out of terror due to a sensory issue, autistic individuals will also defy you frequently on the basis of not understanding why you want him to do something. I remember refusing to do things not because I had noise problems or couldn't stand the lights in the building, but because I couldn't understand why I had to be there and why I had to do the thing my parents or teacher wanted me to do.
Understanding is also important in a second way. It is not only important for the autistic child to understand why he has to do something, but also for the normal person to understand what the autistic person is feeling--generally, confusion and terror.
It is thus important to remember the basic law of understanding: Most people who do not understand why he must do something, or have a basic connection to the person who is asking him to do that thing, will fear or resist, regardless of whether he is normal or autistic.
I am going to tell a true story in which there isn't necessarily a solution to the problem, but the problem would have been fixed if there was understanding.
I was nine years old and traveling on an airplane with my father to Denver. We were assigned an aisle and a window seat, and another man was sitting in the middle seat. This was a change for me, and changes are difficult for autistic individuals.
I had been on other airplanes with my father, but there had never been another person assigned to our row. So I thought this man had stolen one of our seats.
I wondered, who is he to sit next to us? Why is he taking our seats? So I said, "Do we have to sit next to that jerk?"
I was obviously reprimanded by my father, who thought I was acting like a spoiled brat. But I thought the other passenger was a thief and therefore did not deserve to be treated with courtesy.
One could say that I was acting spoiled. But I really didn't know what the rules were.
When someone is behaving according to their needs, expectations, or experiences, then they cannot be termed spoiled. Someone who is fed a lobster tail for dinner every night is going to expect lobster every night. He's not going to think of himself as spoiled if he asks for lobster again. Thus we have the saying "spoiled by the parents." But he can't be held accountable if his parents feed him lobster; it's the parent's fault. But if he knows that his parents are poor and can only afford macaroni and cheese, then asking for lobster would be a problem, and you could legitimately call him spoiled.
Based on my experiences, the guy was a jerk. He was stealing our seat.
Now I'm going to tell you about something else that happened that's going to involve a lack of understanding. But it’s a little more basic.
An autistic kid lives in an apartment. His parents have invited guests to come over to their apartment. The parents know these guests very well. But when the guests walk into the house, the autistic kid runs into a nearby closet.
Why did the autistic child do that?
The autistic child did not understand why the person was there.
So then the autistic child walks out of the closet and tries to push the guest out of the apartment.
Why does the autistic child do that?
Because he does not understand why the person is there, and is thus resisting his company.
Well, that is exactly what I did when I was three years old. I was an obstinate autistic little boy living in New York City--I was not an adolescent giving speeches.
Now think of another story.
An autistic individual is in school and during gym he is asked to go and play a game of coordination with a partner. He and his partner will walk together on two pieces of wood which requires two people to walk on. He clams up or refuses.
Because he doesn't understand why he has to do this, and is thus terrified.
This example is different from the other example in that it talks about fear, whereas the other example talked about resistance. Resistance is conscious refusal because you don't understand why you have to do something. Fear is when you are afraid of something because you don't understand why you have to do it, because it hurts you, or because you think it might hurt you.
But in both situations, it's always better to try to understand what is going on.
So what do you do about this? If the autistic child is terrified of playing coordination, the teacher can ask herself: Is this a necessity? Does he have to play this game of coordination? Or could he do something else?
The same is true with anything that terrifies an autistic child. Before simply forcing him to do it or threatening him with punishments, or saying “That’s one…that’s two,” etc., you should stop and ask yourself: Is it really necessary for him to do this thing?
Some things are necessary—such as eating regularly, learning how to take turns and not to fight with people. But joining the girl scouts and taking ballet lessons are not unless you want to do those things.
That is another key point—drawing the fine line between necessity and non-necessity. Things that terrify the autistic child that are not essential shouldn't be forced on him. You are setting yourself up for resistance, then combat, and eventually an autism cataclysm, in which your child totally breaks down or goes into a shutdown state, which I once dubbed “playing frozen.”
And now I'm going to talk about another symptom of autism that links many autistic individuals together. It is the autistic tendency to have a fixation on a specific subject. The autistic individual sometimes spends so much of his time pursuing that fixation that he starts to ignore other things.
And if he is verbal, he'll talk his family's ear off about his fixation unless he is stopped.
There are many non-autistic individuals who also have fixations. The Internet has made it possible for many fixated people to link together more easily. As is one example out of a million, there are over a dozen fan sites for a ten-year-old child actress named Dakota Fanning. One of those sites even says, "This is a fixation site for actress Dakota Fanning," and even has a page titled, "What is a fixation?" I have no idea whether the person who made that site is autistic, but he or she is obviously obsessed.
I'm not here to comment on that person, but I am going to give you the answer to another question from the autistic standpoint. What is the cause of a fixation? In my view, it is to create a small spot of safety within a large realm of danger. Autistic individuals live in a constant fear of danger. They know that trouble may be just around the corner. Just as deer are always observant of their environments to protect themselves from a nearby cougar, autistic individuals must always be on the lookout for someone who's going to hurt them. But they know that they'll never be hurt by their fixation. They turn to it for protection, for trust, for safety. And what do the normal adults do? They use their power and their control to take the fixation away.
Now let us consider one fixation in particular, an addiction to movies and/or TV shows. Some autistic individuals, myself included, watch certain movies over and over again. I went to an autistic individual's house, and all we did was sit next to each other, not saying a word, and watched his favorite movie, which he had already seen over a hundred times. Meanwhile, I fell asleep while watching that movie.
When I was much younger and couldn’t generate a lot of original speech, I sometimes would quote a line from a movie to convey a thought in words I myself could not have generated. For example, when I was eight, my mother forced me to participate in an Easter egg hunt with my cousins in my backyard, I stood with my basket quoting from the English sailor in the kids’ film, “Grandpa’s Magical Toys.” Somewhere there’s a home video of me standing there repeating with a perfect British accent, “I’m so confused. I don’t understand why I can’t get it right.”
The movie obsession goes farther because you have some autistic individuals who use those movies as a way of learning about life and social interaction. Unfortunately, movies often tell stories that are unusual or unreal--and humor typically involves individuals doing things that are socially inappropriate.
But the movie obsession does have a positive side to it. My father and I have watched many movies together, and it has helped me learn how to interpret facial expressions. I’ve also learned how to detect nonverbal messages through the close-ups and exaggerated facial expressions that directors include in movies for the express purpose of conveying nonverbal information.
However, one thing in particular that can become problematic is the autistic tendency to inappropriately quote specific lines from movies in public. The autistic person wonders why saying something gets him in trouble in real life if it worked in a movie. To show you my point, I’ll give you an example. How many of you are familiar with the movie About A Boy? Raise your hand if you are.
Set in London, there’s a scene in which Marcus, a boy who’s frequently bullied in school, is on his way to the house of a man named Will. He’s being chased by three bullies from school. Will sees him being chased by the bullies outside of his house and decides to do something. When Marcus rings the bell and Will opens it, potato chips are being thrown at him. “Oy! Oy! What are you doing?” he asks the bullies. “Who are you?” one of the bullies asks. “Who am I? Bugger off, that’s who I am,” Will replies. The bullies don’t, so he walks toward them. “Go on, piss off!” he cries, and the bullies run away laughing.
Now let’s say an autistic individual becomes obsessed with this movie. Many autistic individuals, after all, have to deal with bullies at some time in their life. When he sees that Will succeeded in getting rid of the bullies, he might think that that was because of what he said. And then he’ll get the idea that if he says those same things in front of the bullies he has to deal with, he’ll get rid of them too. So the next time the bullies come and tease him, he quotes, “Who am I? Bugger off, that’s who I am.” And if he’s even more obsessed, he’ll say it with a fake British accent. But we obviously know what happens next—it’s a total disaster, and the bullies do not go away. The autistic individual missed two key points from the movie—the story was set in London, and that Will was an adult, not a child.
So what do you do in a situation like that, when you have a child who his obsessed with something that’s causing him trouble? It's not always going to be quoting something from a movie. It might just be something else. Do not try to get rid of the obsession. Find a safe way to allow that child to pursue his fixation. Teach him that there’s a time and place where he can be obsessed and a time and place where he cannot be obsessed, and when those times and places are, if you can. A child who has an obsession with something has an advantage over someone who does not--as that could mean a career opportunity for him in the future. There was once a child who could remember what everyone said at the checkout line of the grocery store, and then repeat it back to you with the exact accent each person was speaking. Was that child autistic? Maybe he was, but that child also grew up to be a world-famous comedian--Robin Williams.
And now I'm going to talk about another issue— social skills in the school environment.
Social skills are a key issue in the school environment. In the public school, the autistic child is often the victim of relentless teasing by his or her classmates. I can tell you that I myself was teased by virtually every student in my class except the physically handicapped ones.
Social skills are a particular problem in a classroom setting because one of the universal priorities is to force the autistic child to socialize with other children. This is supposedly an essential part of development.
On many IEP's, it is stated that an autistic child must make a friend. Some of you may remember Simon in Mercury Rising, and how even at his school for severely autistic children, he was only able to look at his puzzle book after he had sat with the group for a while. In my own brief second grade experience, the teacher forced me to stand in front of the class and recite all the names of the kids. She then forced me to pick a child and publicly ask him a question. I was given a list of all the kids, and after I had questioned someone, I got to cross his name off the list. After my mother found the list and asked me what it was, it didn't take her long to pull me out of that class for good. My teacher protested, however, saying that I had refused to interact with the kids and this public humiliation was going to teach me social skills.
However, social skills aren't always a necessity, and not always in the way that they are taught. I once attended an autism conference in which two teachers talked about the importance of teaching play. This seemed crazy to me. How do you teach play?
They also stressed the importance of ABA methods to teach play, how if a child wants to be himself with a toy he likes, you say he can do it for a specific, limited period of time only if he interacts with someone else using the toy first for ten minutes.
I do not believe that this teaches play. All it teaches autistic individuals is how to hate play. How do you teach play? First, a person cannot play unless they are interested in playing. So, you have to find a way to create interest, such as the approach used in Integrated Play Groups.
Also, play is not something you can sit down and break up into steps the way you can break up how to make a model airplane. That's why you hear stories of autistic individuals that are able to build complex model airplanes and ships. Play is based on spontaneous decisions in the children who are involved that are instinctively made. If you lack that instinct, you're not going to be able to play. It's just organized socializing. In the words of Mark Twain, "Work consists of what a body is obliged to do, and play consists of something a body is not obliged to do."
In that light, teaching play becomes work, as the autistic person is "obliged" to play. Play becomes one more thing the autistic person is forced to do in the course of a day. When I was four, my mom used the star system to get me to work toward various goals. If I got ten stars for doing something correctly ten times, then I could get a brass house number from the hardware store. That Easter she very carefully hid plastic Easter eggs in the backyard and told me that the Easter Bunny had hidden them for me to find. (Note that this was a different Easter egg hunt from the one I had to engage in with my cousins when I eight, as told above.) I stood there gazing out at the backyard, not knowing why I had to go look for hidden eggs in the grass, so she encouraged me. "Go...go and find the eggs," she said, smiling. Then she tells me that I looked at her with fear in my eyes and said, "How many eggs do I have to find to get a star?"
And she realized that, for me, finding hidden Easter eggs was just as much a chore as dressing myself. At that point, she told me to go in the house, that I didn't have to collect any eggs.
Another flawed method of teaching play is by scripting a child. A child learns what to say and what not to say when playing with a friend. This often leads to a disaster, as the normal child simply laughs at the autistic child.
Interest in play must come before learning how to play. When I attended a conference last fall by myself a woman came up to me and told me, "I want you to teach my autistic daughter how to socialize."
The daughter openly argued with her mother, went on and on about how I talked too much and made her nervous, even though I was standing there listening to all of it, and finally the daughter melted down, again in public. I feel as if her mother made her more resistant to socializing than before she came to the conference.
And finally, I am going to talk about several myths that are sometimes stated regarding teaching autistic children.
The first myth is that autism is a behavior problem, and that the solution lies in getting rid of the behaviors. You're autistic because you bang your head on a wall. And in your IEP, it says that in one month, your goal is to only be banging your head on a wall twice a day, with 80% success, then after that goal is met, the goal should be only once a day, and finally not at all. But after your outward behavior has been modified by rewards and punishments so that you no longer bang your head, does that make you less autistic inside? And what if the child, to compensate for having one behavior taken away, starts shaking his hands or pulling out his hair or wiggling his foot or rocking, do you then devise behavior plans to get rid of all these behaviors and pray that he doesn't start slashing his wrists? And even if you make him incapable of doing anything but sitting like a zombie in a chair, does that make him less autistic?
The autism is not any less there because he stopped head-banging any more than a professional American actor becomes an Scotsman when he starts to speak in a Scottish accent.
What if that was the autistic child's coping mechanism, and now he's under more stress because he cannot bang his head? What if he had a disabled nervous system, and these shocks to the head foster neural development? In fact, there are certain therapies that involve intense sensory stimulation that mimic what autistic children do for themselves. For example, autistic children often love to shine flashlights directly into their eyes or flick electric lights on and off rapidly.
These are termed stims, and children are often punished for self-stimming behavior. However, the late Keith Pennock, a doctor who helped plan therapy programs for brain-injured children, frequently asked parents to flash bright lights directly into the eyes of children who had partially lost their sight.
The second myth is the notion of a universal hunger for social interaction and for friendship. We often think that friendship is something that everybody wants, and that is why we teach play. There are many autistic individuals who have friends, and many who have successful relationships. But that does not mean that all autistic people want friends or need friends.
Let me tell you something: Many autistic individuals do not like being forced to interact with other people. And the desire for friends is not universal; it is certainly not as universal as the need for understanding. While I do have some friends that I talk to over the phone and by e-mail, that does not mean everyone else would like doing that.
The third myth is that there is such a thing as a universal solution to any aspect of autism. If we all gave autistic individuals the same wonder drug, or put them in the same behavior modification plan, their symptoms would be gone. But autism is a diverse disorder. It's not one of those things you can just cure with a single treatment. What works with one child is likely to be a disaster for another child. To quote Buddhist scripture, “Nothing is pure, nothing is defiled.”
Consider--Dr. Temple Grandin, an autistic speaker, talks about how she thinks in pictures. But I do not think in pictures.
The final myth is that autism is a disease to the core and we have to get rid of it at all costs. But autism is not a disease. It is a condition that causes many problems, but there are also many gifts of autism.
You cannot cure autism in a literal sense. But you can ameliorate its effects, and certainly make it better for the autistic individual. You should try not only to understand an autistic child but work with an autistic child as much as you can. Because autism can also give gifts, just as Dumbo's big ears in the end became an asset, not a liability. An autistic individual once stated, "I do not want to become more normal. I just want to become more functional."
It is important to stop thinking of autism as something as inherently flawed. We have to remember that while autism causes serious problems, there are always reasons behind them. We should never forget those reasons. And we have to remember that if those reasons disappear, so do the problems.
As the parent or teacher of an autistic individual, you are going to face many challenges. And you are making decisions that can either mess up your child's life, or make a great and positive difference in a child's life. Remember that you are not always right because you're the adult and he is the child. Think of him as an equal, not in his judgment, but in the way you listen to him as you would listen to another person. Remember your confusion about how he thinks is matched by the confusion your child will feel about how you think.
Thank you for listening. I will now answer your questions.