“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.
SALLY: Ahh!
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.
NARRATOR: We
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?
HIGGINS:
ELIZA: Aww!
I won't accept being called a baggage if I've offered to pay like any lady.
NARRATOR:
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?
HOUSEKEEPER:
Yes.
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.
NARRATOR: We
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.
LUCY: No.
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.
NARRATOR:
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.
NARRATOR: We
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--
MOLLY: Quiet.
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.
NARRATOR: We
now take you to the front of a private
MOLLY: Hi!
RAY: Oh, my
god. You're my new nanny?
MOLLY: Hi,
RAY: It's
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.
MOLLY:
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.
MOLLY: God.
NARRATOR:
Ray takes Molly to her room.
RAY: Shoes!
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.
NARRATOR:
Several weeks pass and Molly continues her job as Ray's nanny. She eventually
decides she wants to take Ray on a trip to
MOLLY: We're
going to go to
RAY: Are you
on crack?
NARRATOR: We
now take you to a Brooklyn street near
MOLLY: You
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.
However,
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?"