“Understanding: The Free Therapy”
Why don't we start by following the first Mandatory Rule of Social Interaction.
How are you?
I am fine. Now I can begin.
Now, I'm sure you're all here for the same reason. You have an autistic child. Or you work with an autistic child. You're also here because you have obviously tried to help that child, but your attempts may not have been successful. Sometimes you may wonder why you are such a bad parent. Or why your therapies aren't working the way they're supposed to. Sometimes you feel as if nothing helps.
Well, I'm going to tell you about something else that might help your child. But my point of view may be different from what you'll read about in therapy books. I'm going to tell you things that you might easily accept, but to mainstream educators and traditional doctors, they are pretty radical.
The title of my speech is: "Understanding: The Free Therapy." Of course, everyone in this room wants to understand their autistic child or student. However, it is equally important for your autistic child to understand you. The goal of my speech is to help you understand each other, and let me tell you, your behavior is just as baffling to him as his is to you. Sometimes understanding each other is the thing that makes all the difference.
There are a few basic things you need to know in order to understand your autistic child. One of these is understanding the way an autistic person learns. Many of you eagerly put your kids into mainstream classrooms so they can learn social skills by watching normal kids. Most of the time, however, the autistic kids don't learn anything--except perhaps greater fear, more suspicion, and better ways to isolate themselves. Autistic kids don't learn from normal social interactions. Normal events occur too quickly, are too stressful, and have unfathomable rules that keep changing. Autistic kids learn social behavior much better from things like movies, books, and Nintendo games--you know those things that they fixate on, quote from, and obsess over--things you're supposed to limit or take away altogether?
For me, movies are a great social learning tool because they're non-threatening, they require no response, the viewer is invisible to the players in the movie, the stories illustrate major issues of human life, AND they can be rewound and replayed. I learn important social lessons from movies. And I have learned quite a bit about autism from movies, even though the movies themselves have nothing to do with autism. What I've learned is that normal people often act like autistic people when put in highly stressful or incomprehensible situations, similar to what truly autistic people experience every day. Hence, my drama troupe and I are going to illustrate my points by acting out scenes from various films.
When I was much younger, I was supposedly unable to engage in imaginative play. That is a classic symptom of autism. Yet by reciting movies, I was engaging in imaginative play. I didn't have the language to create a character, but I could act out a character, I could become that character, I could learn about other points of view from that character. As soon as I could type well, I used to type out movie scripts from memory or write plays for my sister and my mother to act in. This was and is my social learning tool.
When you watch our skits, you may not understand at first what's going on. "Why am I watching this?" you might ask yourself. I'll have to explain to you afterward what lesson I learned from each skit, and what message about autism the skit conveys. But bear with me. When I am engaged in a real-life social interaction, I generally have no idea what's going on either, I don't know what's going to happen next, and I usually am unable to figure out the proper way to interact. So if you feel confused, consider it a learning experience. You are feeling what I feel every single day. But hopefully once I explain to you what I learned from the skit, everything will be clear.
Without further ado, let's start with our first topic--understanding. You all know about food, clothing, and shelter as basic human needs. Now we're going to discuss understanding as a basic and essential human need--that is, to know why something is happening, why one is expected to do something or behave in a certain way, or why something is being done to oneself by another person.
But wait a minute here. What basic need to understand?--you may ask. I have no need to understand what is going on at all times and in all places. I just do something because I have to do it. My child with autism certainly has to question and resist everything, but not me. I am an obedient person--my child is disobedient. I always obeyed my parents without questioning it. I was able to go to school and obey the teacher and come home--but my child complains, gets in trouble, and disrupts his class all day. If he would just learn to obey and behave, you think sadly. In fact, the entire foundation of behavioral therapies for autism is blind obedience-"I state a command, and you follow without thinking or questioning." No one ever stops to explain to the autistic child WHY he has to put the purple block into the purple hole with 80% accuracy in 4 out of 5 discrete trials--he is simply expected to do it.
However, let's examine the notion of obedience. You say that you usually do something that someone asks in order to obey him. Most of the time you don't ask why because you trust and feel connected to that person. Aha, you see, this is NOT an example of a lack of understanding. When someone you trust and feel connected to tells you to do something, you do it BECAUSE you trust and feel connected to that person, and you want to be dutiful and respectful to that person. And even if you don't have any personal connection to that person, accepting that "you have to do something" for some higher goal or purpose is a form of understanding in itself. Most of the time that is enough.
So, in fact, understanding someone else has three elements: understanding the thing that person wants you to do, feeling enough of a connection to that person to want to do what he or she asks, and understanding the overall goal or purpose of the action. Without those elements, there is often fear and resistance.
To demonstrate how powerful and important one's need to understand is sometimes, we're going to do a skit involving a very famous animal.
I will play Conrad, my sister Lauren is Conrad's sister Sally, and my mother is the Cat in the Hat. Our assistant will be the narrator in all our skits.
NARRATOR: So they slumped in their chairs, too glum to complain, and to make matters worse, it started to rain. They sat in the house on that cold, cold, wet day, with no fun to have and no games to play. Then something went bump. How that bump made them jump.
CONRAD: I think it came from the closet.
NARRATOR: They go to the closet to search for what caused the bump. Conrad decides to go in and look. After no answer for a while, Sally starts to worry.
SALLY: Conrad? Conrad? Come on, Conrad.
NARRATOR: Then, suddenly, something falls onto Sally.
NARRATOR: But it's just Conrad having a little fun.
SALLY: You shouldn't scare people like that.
CONRAD: You should have seen the look on your face. It was as if you'd seen a monster.
THE CAT: A monster? Where?
CONRAD and SALLY: AAAAHHH!
NARRATOR: They run to hide.
THE CAT: That could have gone better.
NARRATOR: They hide in a closet.
SALLY: What was that?
CONRAD: I don't know. It looked like a humongous cat.
NARRATOR: They discover the cat is also in the closet.
THE CAT: Humongous? I prefer the term "big boned" or "jolly." Well, what are we hiding from?
CONRAD and SALLY: AAAHHH!
NARRATOR: They run away again, only to find the Cat in their next hiding place—under the bed.
SALLY: That was a giant cat.
CONRAD: But that's impossible.
THE CAT: It's entirely impossible. You know, I like this hiding place a lot better. They'll never find us here. Scream and run?
CONRAD AND SALLY: AAAHHH!
NARRATOR: They run from the bed back to the hall, only to find the Cat standing there at the hall entrance.
CONRAD AND SALLY: Who are you?
THE CAT: Who, me? Why, I'm the Cat in the Hat. There's no doubt about that. I'm a super-fundifferous feline. Here to make sure that you're--feline, meline, turpentine. Well, I'm not so good at the rhyming, I'm sure you understand. Look, I'm a cat that can talk, that should be enough for you people.
SALLY: Where did you come from?
THE CAT: My place, what else do you think? Also, you've been very rude as not to ask me what I want to drink.
SALLY: I'm sorry, cat.
THE CAT: Well, I can see that your house will do quite nicely. Now, let's see what the old Phunometer has to say.
SALLY: The Phunometer?
THE CAT: Yeah, it measures how fun you are.
NARRATOR: He measures both of the kids.
THE CAT: Just as I suspected, you guys are both out of whack. You're a control freak, and you're a rule-breaker.
NARRATOR: The Cat shows them how they can have fun if they only know how. However, the entire house becomes trashed as a result, and their mother is coming home. At first, both kids are furious. After demanding that the Cat leave, they wonder how they'll deal with their mother. However, the Cat walks in with his clean-up machine, and the whole house magically becomes spotless again. The kids are amazed. Then the Cat must leave so that they can look as if nothing has happened.
THE CAT: Okay. We had some good times. We cleaned up the house. We even managed to put in an uptempo pop tune in the soundtrack. I guess there's just one last thing to check.
NARRATOR: The cat uses his Phunometer to measure them again. They now are just right.
THE CAT: Looks like everything's in balance. But you're still smoking way too many cigars, and you, lay off the sauce.
SALLY: Cat, this day has been amazing. Thank you.
CONRAD: For everything.
THE CAT: Conrad, Sally, adieu.
NARRATOR: And so the cat leaves--exactly the same moment their mother walks into the house.
I take it there's no mistaking where that skit came from. It's from the 2003 movie The Cat in the Hat, starring Mike Myers. And of course, the Cat in the Hat has nothing to do with autism. No one in this movie is in any way autistic. Yet how did the children first react to a strange being in their midst? They screamed, and they hid, just like an autistic child. They didn't understand what this being was all about; he was different and therefore a perceived threat.
Why didn't the kids just accept his presence from the beginning? Isn't that what children are supposed to do? Aren't they just supposed to accept any adult who walks into their lives and seeks to control it? Of course not. The Cat did not fit any preconceived notion they had about a safe and logical being. And they had no intrinsic connection to the Cat; he was an alien and hence to be feared.
It's interesting that Conrad and Sally are afraid only at the beginning. By the end of the movie, after the Cat has trashed their house then magically cleaned it up--events that make no logical sense--they are no longer afraid. They don't understand the Cat's action, but feel a basic connection to the Cat, and therefore, he and his behavior are not to be feared.
When I think of this movie, I recall my own four-year-old self. Like Conrad and Sally, I was abandoned by my mother for the day—in my case, in a large, noisy, incomprehensible place called preschool. I would look around and see a vast array of meaningless activities that held no interest for me; a bunch of noisy, smelly little beings running around without purpose, and a group of baffling adults who made me do things that made no sense. As soon as the first large, scary being confronted me, demanding that I do something useless like cut paper or play with clay, I did what Sally and Conrad did--I hid--in the closet, under the table, behind the couch. That is what children DO when confronted by what they believe to be a monster. But it seemed that, as in the movie, everywhere I hid, the monster found me.
Now, let me tell you something. If you think that it is rational for Conrad and Sally to be terrified when they see the Cat in the Hat, then you should think that when an autistic child is terrified due to lack of understanding and connection, his terror is equally rational. When we see an autistic person refuse to do something because he's terrified or lacks any form of understanding as to why he has to do it, it is no different than when we see a normal person run away from something incomprehensible. We need to address the autistic person's fear and lack of understanding, not just punish him, take away privileges, deduct points, force him into that situation over and over to make him "get used to it," or put him into a behavioral therapy in which the punishment for not doing the dreaded thing is so much worse than the thing itself that the person will comply out of fear of the punishment. Nowhere in the 1-2-3 method or the point system of behavior control is the subject of understanding ever addressed. And that's why those systems often don't work in the long run.
So there was our first example of how I, as an autistic person, learned a valuable social lesson, not from real life but from a movie. Our first point was not only the need to understand but what can interfere with our ability to understand--in this case, lack of familiarity and lack of connection.
What else stands in the way of understanding? Well, it's not just lacking knowledge about and connection to another person but lacking the ability to know how to connect, in other words, lacking a theory of other minds.
A very famous expert recently stated that autistic people, by definition, lack a theory of other minds, or "a theory of mind," a term that is frequently used by countless autism researchers that was first discussed by Dr. Simon Baron-Cohen in his book Mindblindness.
However, before we discuss whether this is true or not--we have to ask ourselves--What exactly is a theory of mind?
Dr. Simon Baron-Cohen, the person who originally coined the term along with a group of researchers, in an essay “Theory of Mind and Autism: A Review,” defines it like this: “By theory of mind we mean being able to infer the full range of mental states that cause action. Having a theory of mind is to be able to reflect on the contents of one’s own and other’s minds.”
Dr. Stephen Edelson, in a summary of his book, “Theory of Mind,” defines it like this: “Theory of mind refers to the notion that many autistic individuals do not understand that other people have their own plans, thoughts, and points of view. Furthermore, it appears that they have difficulty understanding other people's beliefs, attitudes, and emotions.”
My definition is this: A theory of mind is the ability to understand what another person is thinking. It is an ability to sense what another person is feeling even though we are not or may never have felt this ourselves. It is the ability to understand that other people have thoughts and feelings that might be separate from ours and to respect their right to have them.
I do not disagree with Dr. Cohen or Edelson in his definition about the theory of mind. I, however, would go further and argue that the theory of mind that researches believe is lacking in people with autism, is also lacking, in other ways, in most people. I would also argue that autistic people may not have a theory of mind towards neurotypical people, but might still have a theory of mind toward other groups of people, such as fellow autistic people. In short, everyone has some ability to understand some people, but it is impossible to be able to understand everyone on the planet. Here’s why I believe that.
Because a theory of mind allows us to assume certain feelings about other people, it is also a major reason why we have a code of morals. It is also why we are able to feel a sense of empathy. When we see a mother cry because her child is seriously injured, we feel sorrow and empathy for her. But empathy and theory of mind, although related, are two different things. Theory of mind determines whether or not you understand intellectually how someone feels, but empathy determines how you feel for the person.
So it is currently thought that because an autistic child does not feel sorrow for people who are hurting, does not understand what others are feeling, that he lacks a theory of mind. In one sense, this is true. When an autistic child hides in the corner during a birthday party, he does not in any way understand why the other kids at the party are laughing and enjoying themselves. To him, the party is the worst form of torture. But instead of pointing fingers at him, the question must be asked: How can this child's mother be so mind-blind as to think that he could possibly enjoy himself at such an event? Similarly when she leaves him screaming or playing dead at the front door of the school, how can she be so mind-blind as to think that school is a good experience for him? When her child screams and demands to be taken home and she punishes him or calls him spoiled, what is the message that she is sending him—I'll tell you: that another person's feelings don't matter, that another person's feelings are to be ignored. That is a lesson that she teaches him by her actions, and it's something he learns early and too well. She essentially tells him that it is not important to have a theory of mind about another person.
Let's go back to the example of me sitting bewildered in preschool. I tried as hard as I could to be invisible-by hiding, by shutting down, by refusing to participate. No one paid any attention to my real wishes, but instead got more and more intrusive and demanding. Many times people would criticize me openly, as if I weren't even there, as if my feelings didn't exist. None of this helped me to develop a theory of mind about them, but as the years went on, I became quite attuned to other misfits, outcasts, and isolated loners. If I fail to understand the neurotypical mind, that does not mean that I am incapable of understanding all minds.
There is another aspect to theory of mind that I would like to illustrate in our next skit. In some cases, a person is perfectly capable of understanding what another person could be thinking, but that first person is not required to care. In a social system in which slaves are not considered people, for example, no slave master feels bad or even thinks twice about torturing or abusing a disobedient slave. Although it might surprise you to realize this, your autistic child may feel that you have disregarded and ignored his true feelings so much and for so long, that he no longer cares what you feel or what you want. How often have you talked about him as if he weren't there, as if he has no feelings, as if he can't hear or understand what you say? How often do other people ask questions of him in his presence as if he were some pet or servant? Take a minute to put yourself in his position-it might help you develop the theory of mind that you may be lacking.
In our next skit, we're going to see a scene from a movie that I'm sure you'll all recognize, as it is from a famous old musical. I will play phoneticist Professor Henry Higgins. Lauren will play a flower seller, Eliza Doolittle. And my mother will play Mrs. Pearce, Higgins' housekeeper.
take you to a mansion in turn-of-the-20th century
HOUSEKEEPER: There's a young woman here who wants to see you, sir.
HIGGINS: Young woman? What does she want?
HOUSEKEEPER: She's quite a common girl, sir. Very common. I'd have sent her away, but I thought you might have wanted her to talk into your phonetics machine.
HIGGINS: Has she an interesting accent?
HOUSEKEEPER: Ghastly, Mr. Higgins.
HIGGINS: Well, show her in, Mrs. Pearce.
NARRATOR: Mrs. Pearce sends Eliza into the room.
HOUSEKEEPER: This is the young woman, sir.
ELIZA: Good morning, my good man. Might I have the pleasure of having a word--
HIGGINS: No, no, no. This is the woman from who'm I jotted down words last night. She's no use. I've got all the records I need.
I'm not going to waste another cylinder on her. Well, off with you, I don't want you.
ELIZA: Don't be so saucy, you ain't heard what I come for yet. Did you tell him I come in a taxi?
HOUSEKEEPER: Nonsense, girl. What do you think a gentleman like Mr. Higgins cares what you came in?
ELIZA: Wow, we are proud. Well, he ain't above giving lessons, I heard him say so. I ain't here for a compliment. If my money isn't
good enough, I'll just go elsewhere.
HIGGINS: Good enough for what?
ELIZA: Good enough for you.
NARRATOR: Higgins looks blankly.
ELIZA: Well, now you know, do you? I'm here to have lessons, and I'm here to pay for them too.
HIGGINS: What do you expect me to say?
ELIZA: Well, if you were a gentleman, you might ask me to sit down. Don't I tell you I'm bringing you business?
ELIZA: Aww! I won't accept being called a baggage if I've offered to pay like any lady.
Colonel Pickering cuts in to remind Professor Higgins of the bet Higgins made
last night that he could pass Eliza off as a proper lady. Eliza offers a
shilling an hour. Higgins refuses. So
HIGGINS: You know, it's almost irresistible. She's so deliciously low. So horribly dirty.
ELIZA: Aww, I ain't dirty. I've washed my hands and face since I came here.
HIGGINS: I'll take it. I'll make a duchess out of this draggle-tailed guttersnipe. We'll start today. Now. Right away. Take her away, Mrs. Pearce, and clean her up. Use sandpaper if you can't get anything out otherwise. Is there a good fire in the kitchen?
HIGGINS: Take all her clothes off and burn them, then send up an order of some new ones. Wrap her up in brown paper 'til they come.
ELIZA: You're no gentleman if you're to be talking about things like these. I'm a good girl, I am, and I know what the likes of you
are, my dear.
HIGGINS: We want none of your slum prudery like that around here, young woman. You've got to learn how to behave like a duchess. Now take her away, Mrs. Pearce, and if she gives you any trouble, wallop her.
ELIZA: I'll call the police, I will.
HOUSEKEEPER: I've got no place to put her.
HIGGINS: Just put her in the dustbin.
HOUSEKEEPER: Now, Mr. Higgins, please do be reasonable. You must be reasonable. You can't walk over everybody like this.
HIGGINS: I? Walk over anybody? My dear Mrs. Pearce, I had no intention of walking over anybody. I was just suggesting that we
should be kind to this poor girl. I didn't express myself clearly because I was afraid I would hurt her delicacy...or yours.
HOUSEKEEPER: I think you'd better let me speak to the girl properly in private. I don't know that I can take charge of her or consent to the arrangement at all. Of course I know you don't mean her any harm; but when you get what you call interested in people's accents, you never think or care what may happen to them or you. Come with me, Eliza.
Okay, let's stop here. Most of you know where this skit came from. We just saw a scene from the Alan Jay Lerner and Frederick Loewe musical My Fair Lady. In this scene, Professor Higgins is asked by a poor flower seller, Eliza, to give her lessons on how to speak like a proper lady.
To our manner of thinking, Professor Higgins, by the way he treats Eliza, is nothing but a horrible jerk. However, this illustrates how crazy and narrow the entire theory of mind situation is. After all, this scene is set in a society of extreme distinctions between things we call the "classes." People were not just people, all created equally; some were important, most others were not.
Does Professor Higgins have a theory of mind about Eliza? Does he understand, or care, how his words hurt her? Absolutely not. However, does Eliza have a theory of mind about Henry Higgins? Does she understand what he is? Again, absolutely not.
But the question is--is there anything wrong with Eliza lacking a theory of mind toward Higgins? These two people are from totally different worlds that hardly interact. And if Higgins lacks a theory of mind toward Eliza when he abuses her, and if Eliza lacks a theory of mind toward Higgins when she naively offers him a shilling an hour for language lessons, does this mean that each is incapable of developing any theory of mind at all, or that their individual experiences are simply too different to be predicted by the other person?
And if we can relate this to the little boy stuck in preschool, perhaps we can see that his experience is so vastly different from the other kids and the teachers in charge that neither can understand or empathize or behave appropriately toward the other. But like Higgins, the teachers-those with power-assume that it is the lesser being who is defective and must be changed, that the lesser being must be assimilated into the larger circle, which is the only correct one, and this must be done without regard for what the lesser being must suffer, what he or she may leave behind, or the future consequences of changing him into something that he is not.
Now that we have talked about theory of mind, empathy, and the morality that evolves from the presence or absence of it, I'd like to discuss a different aspect of morality, and that is the moral absolute. Here is yet another thing that often impedes our ability to understand. Absolutes are related to prejudice in that if you prejudge someone without examining the facts, you will never understand him.
What is an absolute? It is, in essence, a belief that links one thing with another. In simplest terms: If A is equal to B today, then a moral absolute would dictate that A is always B. Conversely, if A does not equal B today, then it can never equal A in the future.
Now the absolute in and of itself isn't a problem. The problem here is not that an absolute states that A equals B but that it refuses to accept that there may be a time when A does not equal B. In essence, it refuses even to consider that A may equal B today but might not equal B sometime in the future. When the philosopher DesCartes announced that black people were creatures unable to feel pain and suffering, he was just expounding a common absolute of the day. We can't blame him for the fact that he said that, but if he were alive today and remained unwilling to change his beliefs when the evidence dictated otherwise, then that would be a problem.
Now how does this relate to autism? Well, you might not realize it, but there is a mind-set out there that says that because autism is a disorder, everything the autistic person does is a symptom of that disorder and, therefore, is bad. On the other hand, everything that a normal child does, because it is normal, is therefore good. Therapists and educators had even come up with the different terms to describe the same behaviors, depending on whether they are the actions of a normal child or an autistic one. For example, a normal child who tracks down every detail for a research project and discusses his findings at the dinner table is seen as bright and precocious and everyone listens politely, even though the topic is of little general interest. An autistic child who does the same thing is told that he is obsessing and perseverating, and he is boring everyone. If a normal child rocks back and forth after enduring a serious trauma, he is regarded as comforting himself; if an autistic child rocks back and forth to escape an intolerable world, he is seen as stimming, and therapists swoop down on him to take away his stims, even though they make no attempt to modify the intolerable environment that prompted that behavior.
We're now going to do another skit that challenges an absolute that disabled people are universally flawed and normal people are universally flawless, even if there is plenty of evidence to the contrary. In the first scene, I am Sam Dawson, a mentally retarded man, and Lauren is Sam's daughter Lucy. In the second scene, I am Mr. Turner, the states' attorney, Lauren is a therapist, Mrs. Davis, and my mother is Sam's lawyer Rita.
take you to an apartment in
LUCY: How can we be so diff-, diff-, diff-? I don't know that word.
SAM: Yes, you do, because that's a word that starts with a "D."
LUCY: I'm tired.
SAM: I don't believe you.
LUCY: Are you calling me a liar?
SAM: Yes. I think you have to read the word.
SAM: Yes, you have to read that word.
LUCY: I won't read the word.
SAM: I'm your father, Lucy, and I'm telling you to read the word. I can tell you to read the word because I'm your father.
LUCY: I'm stupid.
SAM: You are not stupid.
LUCY: Yes, I am.
SAM: No, you're not. You can read the word.
LUCY: I don't want to read it if you can't, Dad.
SAM: But it makes me happy when I see you read the word. Yeah, it makes me happy.
LUCY: They perched in silence for a long time. "How can we be so different and feel so much alike?" mused Flitter. "How can we feel so different and be so much alike?" wondered Pip. I think this is quite a mystery.
But before then, at a restaurant, a stranger started talking to Sam. Sam was
unaware that this was actually a soliciting prostitute. He was arrested for
soliciting her even though she solicited him and he had no idea of what was
going on. This caused a social worker to look up Sam's history. When she
learned that Lucy was "playing stupid" so as not to hurt her father,
she took that to justify removing Lucy from his home. Now Sam must fight the
legal system, to regain custody of his beloved daughter. We take you to a
THERAPIST: At her birthday party, I believe that her true feelings about her father were revealed.
RITA: Objection. True feelings revealed?
MR. TURNER: Your honor, Mrs. Davis is appointed by the court for her opinion.
NARRATOR: The judge overrules the objection.
RITA: Then any child who rages because they couldn't stay up that extra hour, or perhaps said they hated their parents because they didn't want to take a bath would be a prime candidate for foster care?
MR. TURNER: Objection, your honor.
NARRATOR: Objection is sustained.
MR. TURNER: Now, Mrs. Davis, I assume that during your therapy sessions that Mr. Dawson extolled his parenting abilities?
THERAPIST: On the contrary. Mr. Dawson admitted he'd been confused at times, and sometimes very terrified, that he made and would continue to make, I can quote here, huge mistakes, huge mistakes.
MR. TURNER: No further questions.
RITA: You're a mother, Mrs. Davis.
MRS. DAVIS: Yes.
RITA: Would it be all right to say that, at times, you've felt confused, even overwhelmed, even though you're normally a wonderful mother?
MR. TURNER: Objection!
RITA: But then, if Mrs. Davis had never felt this confusion, wouldn't that bias her opinion? I mean, as a mother, I can say I've made huge mistakes. And I've heard many parents who feel at times so overwhelmed that they almost feel retarded. Disabled in some way. Moments where everyone feels they've made mistakes.
NARRATOR: While she was talking, Mr. Turner constantly made objections. Eventually the judge says that Rita must ask a question or else she cannot continue speaking.
RITA: Let me rephrase the question. When your son OD'd, did you or do not feel as if you had made huge mistakes?
NARRATOR: Mrs. Davis starts to cry.
MRS. DAVIS: Yes. Yes.
RITA: No further questions.
So where did this movie come from? I came from the 2001 movie “I am Sam,” starring Sean Penn. In terms of portraying how misunderstood developmentally disabled people are, it is a classic film. Anyone who gets around to seeing it should do so.
Perhaps you're wondering what social message I learned from this film. Well, here it is. It's basically that you can't judge somebody from appearances, and that you cannot understand a person's life from preconceived notions or absolutes about what they can or cannot be. This seems simple enough, doesn't it, except that it's something you and I do all the time, especially when it comes to autistic people.
In this movie, a mentally retarded man, Sam, has done a wonderful job of raising his daughter, Lucy, who is now seven and very happy. However, his daughter has been taken away from him only because he is disabled. The absolute that is operating here is that disabled equals incompetent. Yes, being disabled certainly can impede one's abilities to do things, but not in every single case. Interestingly, there are two normal, intelligent people in the courtroom-a top lawyer and a social worker-who have made a horrible mess of their children—Rita the lawyer's son despises him while the social worker's son, as we learn, OD'd and presumably died-yet no one has put them on the witness stand. In fact, the social worker has been hired to be an expert witness as to Sam's alleged incompetence.
The powerful strangers who have intruded into Sam's life have all decided that Lucy is suffering, even though Lucy is happy and well-adjusted and adored by her father. The teacher makes a big deal out of the fact that seven-year-old Lucy is holding herself back in reading so as not to outdo her father. And yet, as we saw in this skit, Lucy holds herself back out of love for her father—that is a sign of empathy and altruism, traits that average seven-year-olds do not normally possess. And who is her teacher in these lessons of higher moral functioning? Why, her father, of course, who insists that she read according to her own ability. "It makes me happy when you read," he tells her.
The powerful people around Sam also claim that he has no support system, even though he does have help-from five close friends who adore Lucy: a paranoid man, a man obsessed with movie facts, a man with ADD and OCD, a man with Down's syndrome, and an agoraphobic neighbor who hasn't left her apartment for 26 years. Although social misfits, these people demonstrate an understanding of friendship and community that is far superior to the nasty, argumentative, bickering people in the courtroom. In fact, in one scene, Sam lashes out against his lawyer as someone who cannot possibly understand what he is going through. "You're perfect," he screams. "You were born perfect, and I was born like this! You don't have any feelings! Perfect people don't have feelings!"
Even though this movie is about a mentally retarded man, the issues that Sam had to face are still similar to what autistic people sometimes have to face. When I watched this movie, I kept thinking of myself and other autistic people, and how everything we do is held up as a symptom of our disorder, how everything we do is wrong, how some of my friends are imprisoned in households in which they are punished for even the tiniest infraction of some behavioral modification plan that seeks to mold them into something that they aren't, how autistic kids are in schools in which they carry point sheets around like passports and they live in fear of talking too loudly and hence losing a point or having a privilege taken away.
At the end of this movie, all the so-called perfect people learn an important lesson from Sam, and Rita, his lawyer, becomes a better parent because of it. To paraphrase Shakespeare, they learn that nothing is absolutely right and wrong, but their own thinking made it so.
Our final movie skit relates to a topic that is troublesome to all autistic people, but to us "high-functioning" individuals in particular. It is the misidentification of certain behaviors as autism itself, rather than the symptoms of autism. And along these lines, treatment focuses on changing the behaviors rather understanding the disorder or the inner condition that prompted those behaviors. This is a common fallacy in our behaviorist-oriented scientific and medical professions. For instance, if I cough and blow my nose, I am said to have a cold. But coughing and blowing my nose are not the cold itself; they are the body's normal attempt to eradicate the cold, which is, in fact, the invasion of my body by a disease-producing virus. The disorder and the behaviors connected with that disorder are two different things.
Ever since words like "autism," "PDD," and "Asperger's syndrome" appeared in the English language, definitive distinctions were officially drawn between neurotypical people and autistic people. Normal people behave this way; autistic people behave that way. However, there seem to be a lot of so-called normal people who display autistic traits when they appear within the intense stresses and conflicts that take place in movies. Other movies depict precocious children, spoiled children, temperamental artists, and even well-known geniuses as having traits of autism. This does not mean that they are autistic, but rather that autistic behaviors are not necessarily autism or even a disorder at all.
To show you how easy it is to confuse an autistic person with a normal stressed person, normal precocious person, or even a normal spoiled brat, we're now going to see six scenes from another movie. Also, just to make sure I don't give false impressions, my character in this skit is African-American. Any use of accents in any way is by no means meant to insult anyone or to present racism, but to instead portray a film's character. Lauren is eight-year-old Ray, and I am Huey, Ray's former nanny. In the first scene, my mother is Molly; in the second scene, she is Roma, Ray's mother. She is Molly in all remaining scenes.
take you to the birthday party of Molly Gunn, which is taking place at a
MOLLY: Oh my god, who is that?
HUEY: It's my boy Neil Fox. I found him playing in a dive in the village. Man, he's smoking.
MOLLY: Can I have him for my birthday?
HUEY: No, Molly, I brought him here so Roma could check him out. Besides, he's 100% girly-free, he's celibate. He's all about the
music, you know what I'm saying?
RAY: Well, you wouldn't know real music even if Mozart hit you on the head with it, Gooey-Huey--
RAY: Quiet? This place is so loud it's given me a migraine. Mom!
HUEY: No, no, your mama's there talking to his agent. We've been trying to sign him up for months. Could you please keep it down?
RAY: Mom! I want to go home! Now!
NARRATOR: We now cut to the nightclub entrance. Ray and her mother Roma are walking to their car.
HUEY: What'd I tell you Roma, he's smokin' right?
ROMA: You did good, Huey.
RAY: I need eight hours, Mom, if I don't get eight hours of sleep, my immune system crashes.
ROMA: Record a demo, something more uptempo, something I can put on the radio.
RAY: Oh, come on. Let's go, go, go, go.
now take you to the front of a private
RAY: Oh, my god. You're my new nanny?
Ray. Nobody calls me
MOLLY: Ok, Ray. I'm Molly. We met at my birthday party, remember?
RAY: You're late.
MOLLY: By like a second.
RAY: By three-and-a-half minutes. I have to take my medicine at 4:26 and it's 4:18 right now.
MOLLY: We'll take it when we get home.
RAY: That's when I take my other medicine.
NARRATOR: Molly falls on something on the sidewalk and trips. Ray just keeps walking.
RAY: The agency must really be getting desperate.
NARRATOR: 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.
MOLLY: I actually am uniquely qualified for this position, having had so many years to develop my skills as a people person.
NARRATOR: Ray takes her pills.
NARRATOR: Ray sees Molly drink her fruit punch.
RAY: Fruit punch? Why don't you just drink cyanide? At least it's quick.
NARRATOR: Ray walks away. Molly is furious.
NARRATOR: Ray takes Molly to her room.
MOLLY: This is your room?
RAY: There's no fooling you, is there.
MOLLY: It's so...orderly. Wow! These are so neat! I remember when there were only four models of this. She's beautiful. Look at her legs.
RAY: That's my doll! Put her back!
MOLLY: How cool is this! Look at this little tea set!
RAY: Hey, hey. You don't touch that unless I happen to invite you to tea.
Several weeks pass and Molly continues her job as Ray's nanny. She eventually
decides she wants to take Ray on a trip to
going to go to
RAY: Are you on crack?
now take you to a Brooklyn street near
have to eat one, Ray, or they're not going to let you into
RAY: They're toxic. They have dead rats and nitrates, you maniac.
MOLLY: Do you want to ride the spinning teacups or not?
NARRATOR: They enter the diner, order their food and it comes. Ray is now looking at her hot dog with utter terror. Ray picks up her hot dog, slowly moves it to her mouth, starts to take the first bite...
MOLLY: Did you swallow? Swallow.
NARRATOR: Finally, Ray swallows. Molly takes Ray's pulse.
MOLLY: She's alive! She's alive! SHE'S ALIVE! THE OPERATION WAS A SUCCESS, LADIES AND GENTLEMAN! SHE'S ALIVE!
Okay, let's stop there. I think we all need to take a deep breath. That was pretty exasperating, right? For those of you who haven't seen this movie, it's called Uptown Girls, starring Brittany Murphy. This movie has nothing to do with autism. It's called a "chick-flick." However, I found something else in this movie, and that's why I showed it to you.
I found myself in a child named Ray. Society, however, wouldn't think of her as autistic. She's just a spoiled brat. But when I saw this movie, it hit home. If you looked at my behavior over the years, you'd see me as someone who is just like that. Ray was not just a fictional character-Ray was me. Yep, as shocking as it sounds, I am Ray.
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. I was once an extremely picky eater who'd only eat certain things and would refuse to eat other foods. The scene in which Ray was forced to eat the hot dog is a scene I understand very well—I have painstakingly eaten the first bite of many new foods, under severe terror that I'd hate the food but would be forced to eat it from then on.
For this was not only a powerful movie 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, the bad things I did. I never saw myself as clearly as when I watched Ray.
what distinguishes an autistic person from a spoiled brat is not how they
behave, but their motive. If the motive is to get attention and demand your
way, you've got a brat. If the motive is self-preservation in the face of
unspeakable terror, then you're more likely to have an autistic child, or a
normal child who has a need for some stability in his or her life, someone who
would act normally if such stability was in their life. When I was seen as
misbehaving, it was because I had reached what I called "my limit." I
simply couldn't take whatever was happening anymore. I can remember screaming
and yelling, "I WANT TO GO HOME!" in a bowling alley, only to hear
replied, "James, you are not the King or the Prince of
Like Ray, I was also obsessed with time. 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. 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 was in tears.
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. I feel that this also can happen with an autistic child if he finally learns that he can trust someone not to hurt him. In this case, the child's autism does not go away; it is the stressful situation that causes the behaviors that changes. Change the stressful situation, and many troublesome behaviors will change on their own. But if you simply change the outward behaviors through rewards or drugs, you will accomplish very little in the long run.
If you are dedicated to real change and are willing to pursue understanding your child, good luck. You're going to have to face many challenges, especially the differences of opinions toward autism by many different parties. But the truth will lie not in theories or absolutes. The truth rests in your child's mind, his feelings, his emotions, and ideas. Do whatever it takes to discover them. Don't take his movies or his games away from him; sit down with him. Find out what he is experiencing and what he is learning when he watches his favorite film for the fortieth time. Get into his head; analyze the logic of his behavior. Help him to understand himself, and to understand you. Don't seek to change anything before you understand it.
And finally, keep an open mind. Be open to any possibility, even if it seems outlandish or illogical. Just because I’ve made the claim that we need to understand, or that an autistic person might resist, doesn’t necessarily mean that it might not be the case for some specific situations. In fact, sometimes a person’s need to understand is met by passive understanding without questioning, as is the case for many neurotypical people, and some autistic people when they are practicing their savant skills!
Now, in closing, I'd like to follow the final rule of appropriate speech making and say, "Thank you very much, you've been a great audience," and then I'll bow, and ask, "Are there any questions?"