In Search of the Proper Autistic Friend
Good
day. My name is James Williams.
The
title of my presentation is, “In Search of the Proper Autistic Friend.”
Ladies
and gentlemen, let us now ponder the following questions.
What
is a friend?
What
separates best friends from other friends we have?
What
is a true friendship versus a false one?
What
is a proper friend?
Friends
are an important part of the lives of most people. People like to be with
people who like them. Anthropologists and sociologists have confirmed this:
people are social beings, and people like to be with each other.
If
you are a parent in this room of an autistic child, there’s that one defining
moment you had in your life you will always remember. It is that day when your
child with autism was diagnosed.
That
day was a day when you were overwhelmed with emotions you might never have felt
before.
Fear.
Grief.
Anger.
The
loss of a dream.
The
end of what you thought was going to be the next eighteen years of your life.
The child you thought was going to mature as a typical being is now disabled.
To
use a reference from Harry Potter, it is a mental Cruciatus Curse.
And
the doctors don’t always help. When I was diagnosed with autism in 1993, my
mother was given a fatalistic prognosis about my future life. I will never be a
thinking or feeling person, the doctor said. I’ll never have a normal
life…never have a job…and should just be put in a full-time special ed program
to get me out of the house.
But
there is one prospect when an autistic child is diagnosed with autism that
seems to scare parents more than the prospect of not having a job, or having a
normal childhood. It is this that stands out in many ways.
It
is the prospect of the autistic child not having friends.
There’s
something about friendship that brings out some of the most powerful emotions
in people. The idea that a child with autism may never live their lives with a
person to hang out with, to play with and to joke with, truly does bother
people. As Pearl Bailey once sang in her timeless classic on friendship: “When
you’re the best of friends, having so much fun together, you’re not even aware
you’re such a funny pair, you’re the best of friends.”
Tara
Tuchel is a special-ed teacher at
What
is the point of this? Why go through all this energy to create something like
friendship? What motivates us to create social relationships for the autistic
children we are working with or our children? Why are we compelled to create
friendship, when we could just let children who prefer to be alone, be alone?
There
is, of course, the scientific explanation. Friendships are important to social
development in the brain; he who does not have friends loses the skills
necessary for brain maturity. This is one of the rationales stated in Dr.
Pamela Wolfberg’s “Peer Play and the Autism Spectrum,” the book that has been
cited by Tuchel as the “bible” for Integrated Play Groups. Play is essential
for cognitive development and social development.
But
people do not just live in an intellectual, scientific world. Otherwise, we
wouldn’t get angry at our loved ones with autism for being too literal, and we
wouldn’t scoff at murderers who are able to talk about the science of killing
people without considering the suffering they are causing. We may try to
facilitate play because of a scientific basis that it helps with brain
development, but I believe there is something else. Parents who do not know
about that scientific basis, after all, still weep when they contemplate the
prospect of their child’s lonely life.
I
believe that we are pained by this concept more because this speaks to one part
of life that brought us such happiness when we were growing up. There’s that
warm, fuzzy feeling that strikes us when we have found that true friend, and
are just effortlessly playing with that person. It is beautiful. It is that one
part of life that we do not want to end because it is so beautiful. And
it pains us because if that prediction is true, our child will never be able to
feel that beauty.
So
this must be why we spend so much energy giving friendships to children. It
speaks to our own desires, and our own memories of happiness. But it also
confuses us. Why is it that it is so difficult for an autistic person to do
something that we have done so easily in our lives? Articles have been written
pondering this concept, such as the article "Profile of Friendship Skills
in Asperger's Syndrome," by psychologist Dr. Tony Atwood which describes a
series of stages of friendship skills in children with autism and/or Asperger's
syndrome.
From
January 2005 to June 2006 I was a volunteer at a child care center. The daycare
center was located in a fitness center, and existed to serve the patrons of the
fitness center as well as the staff. Parents would come to the center and
dropped their kids off for a few hours while they worked. I worked in the
mornings, from 9:00 to 11:30, varying from one to six days a week. In case you
are wondering, I am homeschooled. That’s what enabled me to do this
professional work.
During
this time I was able to see raw play in action. Kids aged 1 to 10 would come to
the child care center. Since most of the kids who came there were only there
for a few hours (except for the staff kids), there were no planned activities
for the kids, except for lunch. The kids were just free to do whatever they
wanted, and the staff members were there just to give supervision. But they did
not give much attention to the kids unless there were only a few kids there. So
the kids would keep themselves busy by playing with each other.
Instead
of just supervising the kids like the staff members, I planned activities for
them. I didn’t just watch them play—I played with them. But I played with them
on their level, and played like a five-year-old. On any given morning, I played
tag, freeze dance, T-Rex, soccer, dog-walking, and was the handsome prince out
to rescue Sleeping Beauty, or the knight the prince had to fight. But I also
created a series of planned activities and informal lessons for the children.
In
the 16 months I worked there (I call it "work" because it felt like
work to me), I taught them about the designs of national flags, how to write
their names in various electronic fonts, and showed them how to engineer music
on the computer. This impressed many of the parents, who now expected their
children to leave the daycare center knowing more than they knew when they came
in. One parent, whose daughter was no longer bored when she came to the center,
would leave her daughter and say, “Go see what James has planned for you
today.” Her mother had every reason to be quite respectful of my work,
especially when she informed me that her little girl no longer fought her
mother, kicking and screaming, to come to the center.
In
short, I entered what Dr. Wolfberg calls the “play culture” of that age group.
I
also had gained a rich social life for myself. By the time I left the center in
June, I was one of the best friends of over four dozen children in my town.
All
right, I’m sure what you’re thinking. What does this have to do with our
discussion with friendship? Here’s how.
First,
I was observing and getting involved with social activity I myself had never
engaged in. I was a semi-verbal isolate between three and five, with no desire
to interact. By seeing what that social interaction was like, I got to see why
it was so difficult for me, any why interaction at that age level is so
difficult for many autistic kids.
So
I’m now going to tell you stories about things I did and saw at the child care
center, and what I learned which showed me why peer play is so problematic for
a child with autism. I’m also going to discuss a paradox that I
encountered—that many of my autistic tendencies that have made me a social
outcast with many people made my very popular with those children.
The
work I did was quite intensive. After being there for 2-3 hours, I might have
played over ten games with different groups of kids, facilitating numerous
social groups of neurotypical kids. No one ever knew I had autism, not even the
parents of the kids or the newer staff members, except for the older staff
members, who had known me since the age of 5.
From
September 2005 to May 2006, four girls, aged 5, would come to the child care
center every Tuesday. Paige, Sally, Tara, and Mary would come and start playing
together. In September, when they first came to the center, I went to their
little group to start an activity with them. Sally immediately refused, since
she thought I was gross, hated all boys, and like many girls that age, thought she
would get cooties if I came near her. The other girls rejected my offer after
Sally did.
Ironically,
Sally’s mother was highly respective of my work. She would always say words of
praise every time she saw me when she came to pick up her daughter—to the anger
of her daughter, who wondered why her mother could like someone while she hated
that person’s guts.
I
respected Sally’s wish and did not pursue to play with her any further.
However, I did have to explain to Sally that just because I was in the same
room with another child did not mean I was trying to interact with her. The
child care center consisted of two rooms, and at first, whenever I entered the
room where she was playing with other kids, she would move away, thinking I was
trying to play with her. However, I never was.
So,
I come one Friday morning. I put down the bag that I bring with the stuff I
show to the children that day. I look at the attendance roster for the children
who are at the center. I go to the toy castle at the corner of one of the
rooms. Who should be there but Paige, Tara, and Mary—but not Sally.
And
once they see me, they are happy to see me, and we start to play tag. Then I
take out my computer and we start playing a game they enjoy to play with
me—drawing national flags.
I
then start to have a semi-personal conversation with the girls. I ask them how
long they have been friends, and they tell me that they have been best friends,
together in their little group during kindergarten. Then Paige asks: “Do you want
us to show you our group hug?”
Not
knowing what to expect, I said, “Sure.”
“Okay.”
Paige and Tara come together and say together, “I hate you!” And then they hug.
Then,
an hour later, Sally comes. And I am immediately rejected by the group, and go off
to play with another set of children.
That’s
a pretty complex set of social skills demonstrated here. And these girls were
only five. But as I’m sure some of you already know, either as parents or
working with children, as well as something I learned within the first month of
working there—girls are far more socially complex than boys at the age of five.
However,
look at all the effort made by these girls to gain social acceptance. They obey
Sally and hate me when they are with her, but love to play with me when Sally
is not there. Since they treated me like a five-year-old, and one of their
playmates, I got to see first hand how neurtoypical kids treat each other.
So
let’s think about the ramifications of this for a person with autism. One thing
we see here is humorous, but blunt dishonesty. First, the girls are dishonest
with themselves with how they feel toward the big guy with the beard, and then,
if that is their group hug, are willing to show sarcasm toward one another even
though those girls really do not hate each other. Autistic people are often the
soul of honesty, yet, as I have shown, sometimes dishonesty is required to be a
friend at that age. If a five-year-old autistic girl tried to interact with
those kids, she would not understand why they would reject me and then want to
play with me when Sally is gone. And I’ll bet they would reject her on the spot
when she could not do what they asked for her to do.
In
fact, I actually did see rejection with a boy who was not diagnosed with
autism, but had many autistic tendencies. Eric was his name. Five years old, he
was obsessed with dinosaurs. Not just obsessed. Fixated. He would come up to
any child, and just talk their ears off about dinosaurs. Especially T-Rexes. He
also was obsessed with trucks, pirates, and policemen. Typical fascinations you
would associate with a five-year-old boy. Dinosaurs are to boys what ballet is
to girls.
But
you could not have a true, reciprocal conversation with Eric. Eric only told
you what he wanted to tell you. Your response could be related to what he said,
and I tried to talk with him about his interests. But he could not even respond
to what I had said. Here’s how a conversation would go with him:
I
would say, “I like T-Rexes too.”
“Excuse
me! Do you know T-Rexes are meat-eaters?”
“Yes,
I do know that—“
“Excuse
me! Do you know that tyrannosaurus rexes have big jaws!”
“Their
jaws are very big. Now, did you know—“
“Excuse
me! I love T-Rexes!”
So even
though I openly talked about T-Rexes to him, he could only respond with what he
thought about saying. I was indefinitely patient with him, and was highly
respected by his mother for giving him this personal attention. In fact, I
reached back into the days of my childhood and created a copy of an old
cassette album I had listened to as a child called Dino-Songs.
It
was an album of 10 songs which described numerous dinosaurs, from Saltopus to
Brontosaurus to Pteranodon and, of course, the Tyrannosaurus Rex. I had
converted the music to a CD for my personal use, and once I met Eric, made a
copy for him. With Christmas coming, I gave the CD to his mother, wrote that it
was from Santa Claus and said, “Since your son likes dinosaurs, here’s the
album of dinosaur songs I loved as a little boy. Put it under the tree and say
that Santa Claus gave it to him.”
The
mother was highly appreciative of this gift; and then told me after Christmas
that her son listened to it all the time.
Eric
would come every Thursday to the child care center. I would introduce myself to
him and then we would play T-Rexes together. We both scouted out the daycare
and look for dinosaurs to eat. I would allow him to play T-Rex any way he
wished; and adjusted to his rules, but I made sure of one thing: He was not to
attack or pretend to eat anyone who was not playing with us and did not wish to
be eaten.
As
the owner of a has-been Nintendo 64 set, I would go to the YMCA with my
Nintendo set routinely. One game involved a T-Rex, where the controller
actually got to control a T-Rex, roar like a T-Rex, and eat other dinosaurs on
the screen. Eric loved this game, and I made sure to bring it every Thursday
when I was at the child care center.
So
while I became quite able to interact with Eric, that was because I did not
question the way he responded. So obviously, I did not teach him any social
skills.
But
I saw how he interacted with his peers. What do you think happened? He was
often rejected. He would only play games he was interested in, and when the
other kids wanted to play a game they were interested in, he would demand that
they play his game. And his game was often some variation on T-Rex.
Other
kids would make fun of him, since he would not compromise with them. One time,
Eric was sobbing because other kids would not play with him. I comforted him
and then asked if he wanted to sit and watch the TV on the screen. I sat down
with my legs out, and he sat on my right knee as he slowly stopped crying.
While I was watching TV with Eric, I overheard a comment by a parent who was
talking to the staff member about something inappropriate. I did not hear what
she said, but ignored it and continued to watch TV with him. I was then asked
by the staff not to let Eric sit on my knee. When I asked why, since they had
let him sit on my knee for the past fifteen minutes, they told me: a parent had
just complained about it.
Finally,
after we played dinosaurs together, his mother came to pick him up. I
apologized to her for letting him sit on my knee, since I was unaware that she
would object. She was shocked, and said, “What?” She had not made the
complaint; another parent had.
Here
we see another lesson about social interaction with five-year-olds: there is a
level of hierarchy among groups of kids but also a level of egalitarianism.
Each child is given a chance to choose a game and lead the game but the leader
is constantly changing. And rarely is a child allowed to be the boss of the
group. Otherwise, that child is rejected or the kids complain that that child
is too bossy. This applied to me just as much as it applied to the other
kids—when I informally played with a group of kids, and I became too bossy or
required the kids to play one of my games, I would be kicked out of the group
and the kids would go off to play by themselves. I could not be the boss or the
leader of the group any more than they could be for a certain amount of time.
And
we can now see how this could cause problems with a child with autism. Most
children with autism can only play on their own level, since they do not know
how to play with other kids. Another thing that typically occurs with autistic
kids is that they feel a sense of uneasiness when they have to play games that
they did not think of themselves. Those games are unknown to the autistic
person and the autistic person often feels uncomfortable playing games that are
unknown to them. So while the other children might have initially played with
him when he asked to play T-Rex, they would go off and play somewhere else when
they asked to play basketball with him and he refused.
A
second dilemma here that emerges is that of a sense of boundaries that children
at Eric’s age learn about that he did not know about. There are rules on what
you must do to join the game of a group. But more importantly, you do not just
start playing a game with someone who is already playing a game without asking.
Eric often assumed that if he was playing a game, he could just go and start
playing with the other kids. This became a problem when I was playing T-Rex
with him, and he, as the T-Rex, would try to pounce on the other kids, trying
to eat them. I informed him that he had to ask a child if he or she wanted to
play before he could pretend to eat them. However, I let him pretend to eat me
any time he wanted to.
On
a side note, there’s another lesson we can learn here, that sometimes people
without autism are unwilling to compromise. What was so wrong about a
comforting a crying child?
So,
there are two strikes against an autistic child here—not only are they rejected
because they have a hard time playing games that other kids want to play, they
are also rejected because of their lack of boundaries, or in some cases, too
much of a boundary.
But
even with the odds against Eric, there was still a ray of hope. A light at the
end of his tunnel. For there was another regular child who came there—a boy
named Steve. Steve would always come there with a plastic grocery bag full of
toy dinosaurs. T-Rexes, stegosaurs, allosaurs, you name it. Steve was not
obsessed with dinosaurs the way Eric was—he was a boy that could play games
other kids wanted to play, and you could have reciprocal dialogue with him. But
Steve was able to adjust to Eric. And strangely enough, Eric was actually able
to have reciprocal play with Steve. When Eric met Steve, they started playing
together, and were as happy as can be. And I respected this. In Wolfbergan
style, when Eric and Steve played together, I backed off. I never played with
the two of them together.
So
we see a confirmation of what Dr. Wolfberg, Dr. Grandin, and what other
professionals in the field of autism have discussed extensively—a friendship
based on mutual interests is the best friendship possible.
As
I have told you, I played numerous games with the children.. But there was one
game that fascinated a four-year-old girl named Christina. It was a game called
crocodile.
Christina
loved it when we played crocodile together. I would go on the matted floor in
the matted room, and creep or crawl like a crocodile, as she ran away from me,
hoping I did not tag her. If I tagged her—she became the crocodile, and I had
to run away from her. This game was actually quite fair—I could creep just as
fast as she could run, and thus we were evenly matched. I could tag her
anywhere she went, unless she was at what she called “base.” Base could be the
slide, the column, the castle, the pirate ship—whatever she wanted it to be.
Christina
would also try to taunt the crocodile since it was quite difficult to keep up
with her. “Come at get me,” she would call, only to then run away to another
part of the room. “Come and get me, crocodile!”
This
would almost always attract the attention of other kids in the room. I would
then be chasing two, three, four, even five kids on my hands and knees as the
crocodile, making sure I spent equal time zeroing in on each kid as I tried to
chase them. In this case, however, I made sure I never did. You see, very few
of the kids ever actually wanted to be the crocodile themselves. Rather, I had
to be the crocodile, since I was so big, and they would chase me.
The
kids loved it when I chased them as a crocodile. They’d be screaming bloody
murder to boot. Whenever I came near a child, he or she would scream and be
happy as can be running from the big bad bearded crocodile. And I would
sometimes throw a little suspense into it by singing the Pink Panther theme, to
then pounce at any unexpected moment.
Okay,
what does this have to do with autism? Quite a lot. Here we see an example
where a neurotypical child’s choice of games would cause an autistic person to
fall apart. An autistic person at this age would not be able to deal with a
game of crocodile. Here’s how:
First,
playing crocodile is a game for the physically active. You get a lot of
exercise when you are running away from a crocodile. And I get a lot of
exercise as the crocodile, slowly creeping along, chasing the kids. It’s
well-known that many kids with autism have low muscle tone that they have to
deal with regardless of how much they exercise; I had this very problem and was
the worst student in gym class. At the age of six and seven, it was physically
impossible for me to play tag; I would be exhausted after a few minutes, and
had this problem until puberty hit. How long could an autistic person be able
to sustain running from the crocodile?
Second,
playing crocodile is a loud game. This is not by necessity, but by how the kids
wanted to play it. They’d always scream as loud as they could at the crocodile
who was chasing over them. It was extremely loud, so loud that the staff
routinely would ask them to stop since it was hurting their ears. And they
didn’t even have autism. How could an autistic person deal with this screaming?
They’d fall apart immediately. Fortunately, while I do have sensitive hearing,
I am not bothered by sustained loud noise—and thus, screaming is not a problem
for me.
Third,
playing crocodile involves sensory contact. You have to touch someone to tag
them. I would tag kids and then they would become the crocodile—unless they did
not want to be the crocodile and would rather have me chase them instead. If an
autistic person has tactile sensitivity, and touching them is like if my hands
were covered with small pins and I touched you with those pins, how would an
autistic person be able to deal with a game like that?
So
know we see why autistic people have a hard time playing games they did not
contrive themselves—games other kids want to play, like the crocodile game,
might be very painful for them to play, for the reasons mentioned above. They
try to be precautionary, and this is why—because perhaps the one time they
accepted to play another person’s game, they were put into sensory overload.
Crocodile was not a game I contrived—rather, it was a game that I was asked to
play by Christina, who then asked me to play it over, and over, and over, and
over, and over again.
Christina
also enjoyed playing the crocodile game I had in my Nintendo set—where you not
only got to be a crocodile, you got to eat frogs and scare other animals.
So
it’s February 2006, and I walk into the daycare as usual with my laptop
computer. I am asked by Carol, a staff member if I have the technology to burn
CDs on my laptop. I inform her that I do, and then she asks if I can make a
copy of one of Victoria’s favorite albums. Carol has three children: Patrick,
Victoria, and Dawn. Victoria and Dawn are in school, but they come to the
daycare center every Saturday when Carol is assigned to work on Saturday. But
Patrick is only four and thus comes every time Carol works at the center.
So
I tell her that I will bring a blank CD to make the copy for her the next day I
come to the center. I do, and make a side copy of the music to myself while I
make the copy for Carol’s daughter. Victoria thanks me that Saturday. I realize
that I am interested in what the music is; so, for the heck of it, I randomly
pick a track from the list of MP3 files I had created from the CD. Suddenly,
this excites Patrick, who immediately starts to dance a specific dance that is
apparently attached to this song.
I
then learn that these songs are the soundtrack from a musical that Victoria,
Dawn, and Patrick all enjoy to watch. Patrick likes this one song in particular,
and requests that I play it over and over and over again. Every time I do, he
performs the dance attached to this song. Knowing nothing about the songs or
the musical, I asked Patrick what the musical is about. Then I notice that most
of the other kids in the center also know the words to these songs, and I
realize I’ve come to the point where I’d better know why this is so popular
because I’m missing a great way of relating to these kids.
So
then I ask the parents of these children what the fuss is about this popular
musical. Finally, Hilary’s mother explains to me that this was a made-for-TV
movie that is frequently aired on cable TV. My mother does not have cable TV at
her house, but my father does at his, and he had just bought a DVD-burner for
us for Christmas. It’s the last week of February, and my father and I are
traveling to Virginia for the weekend. But I am informed just before I leave by
Hilary’s mother the next time the musical was to be aired on TV—the day I
return from Virginia.
With
the DVD-burner just installed in the house, I take this as my opportunity to
try it out. I coordinated the DVD burner and the TV, and made a copy of the
musical that I then could show to the kids at the child care center. If the
songs were so popular, then so would the actual video.
So,
I’m sure you’re wondering, what exactly was that musical that was so popular
with the 4 and 5-year-olds? Why, it’s nothing more than the musical that became
a hit phenomenon all over the world, that I carry with me wherever I go in a
compartment in my backpack on my homemade DVD, “High School Musical.”
And
the kids loved it. I would come into the daycare center, and they would ask me
if I had the DVD. And I would not bring it every time, but would tell them if I
did, and then I would put it on. And when it was on, rows of kids would stop
what they were doing to sit down at my laptop, which would play the DVD to
five, six, sometimes ten children. There were only a few things that would
allow me to sustain a group that large—my Nintendo set, a game of crocodile,
but this was magical. Patrick would dance his hearts content during the
basketball song, “Getcha Head in the Game.” And they all loved the song
performed in the school cafeteria, “Stick to the Status Quo.”
The
movie itself is an extremely powerful one, full of issues that are highly
relevant to the autism community. When I was discussing autism with kids just
earlier, I talked about this musical to them. With stories like the autistic
basketball jock that wowed the country this spring, the two leads could very
easily have been high-functioning autistic people. It’s about Troy, a high
school jock and Gabriella, a female nerd, who both love to sing, and want to
show that talent to their school as well as their own love to one another.
But
their peers are displeased, and want to guarantee that their efforts to sing
are sabotaged. How many autistic people have been in this situation? Lots of
them. Autistic people are constantly made fun of for their weird interests, are
bullied because of what they want to do, and are the victims of sabotage. Yet,
that’s funny—all the kids that saw this movie felt sorry for the victims of
that in the movie, and Hilary, whose mother told me about the musical, loved
the musical despite being one of the most aggressive little girls I had ever
met at the child care center.
There’s
an excellent scene in this movie where Troy and Gabriella are sitting together
holding hands, talking about their lot in the school because of their love to
sing. Gabriella makes an unforgettable point: “When you were in kindergarten,
you would walk up to a kid and ten minutes later, you would be playing like you
were best friends. That’s because you were allowed to be yourself.” Yet in high
school, they were not allowed to be themselves.
Seeing
the autistic parallels in this film, as I have had with this movie, I took this
to my advantage. Whenever we got to the song “Stick to the Status Quo,” I
explained how my presence at the child care center was a deviation from the
status quo in a way they didn’t even think about it—as a young man in a world
mostly occupied by females. When I told them that, it shocked them. Having seen
me come there regularly, they just thought it was normal that males worked in
child care centers.
And
I would memorize their favorite songs, and play them on the one instrument I
know to play on—the recorder. And I’d sing along with the kids, and sing the
high voices and the low voices, for the kids loved it when I sang high like a
girl. I took a passive viewing activity into an interactive social activity for
everyone.
Ironically,
this is the one example where the autistic person would not necessarily be
rejected out of the group. This is a movie begging to be obsessed about, and
it’s strange that while the cast is mostly that of teenagers in a high school,
this is an obsession that has captured preschoolers, elementary school
students, junior high students, and high school students alike. It’s something
so generic that I soon learned I could strike up a nice conversation with a
child of any age just by mentioning something from this musical. So could an
autistic person who knew enough about the musical. This would be something that
would put neurotypical and autistic kids together.
What
this does illustrate, however, is that of another social rule we can see in the
five-year-old world—there are cool obsessions, and then there are weird
obsessions. Eric was obsessed with T-Rexes and would only play T-Rexes, and was
rejected for it. Yet Patrick, the kid who once rejected Eric when Eric refused
to play basketball with him, just wanted to listen to “Getcha Head In the Game”
over and over and over again. Strangely enough, that song was about basketball.
And kids would want to watch this movie over and over and over and over again,
and no one seemed to care about the repetition. Yet most kids would tire of
playing T-Rex again and again and again. Being obsessed does not make you
autistic; it is what you obsess about.
British
autism author Luke Jackson has made a similar point on obsessions. As he puts
it, “When is an obsession not an obsession? When it’s about football.”
Strangely enough, that applies just as much to American football as it does to
British football.
Now
I’ve given you an analysis of potential issues that can arise when autistic
people try to engage in peer interaction, based on what I saw at the child
care. I was able to enter what Dr. Wolfberg calls the “play culture” of young
children. Yet as a person with autism, I have had difficulties with peer
interactions myself. So how was a social doofus like me able to gain social
acceptance with two, three, four, five, and six-year-olds, even after being
rejected by those same ages when they were my peers?
First,
being older and bigger enables you to command respect from the kids. I am not
going to be teased by a group of five-year-olds.
One
set of autistic tendencies is that of a memory for useful, trivial things, and
a strange acting ability that is quite embarrassing in public. But this can be
taken to an advantage with a group of kids—what kid doesn’t laugh when you make
funny faces, or talk like the ogre Shrek? Ogres have layers, and you can
explain that the way Shrek did in the first Shrek movie.
Memory
plays a role here as well. Disney movies are a large part of a child’s life.
What little girl doesn’t love the Disney Princesses? What little boy doesn’t
love Baloo the bear? With my little, four-year-old sister, I would sit and
watch Disney movies I used to love as a child, and would spend my time
memorizing the songs so I can go to the child care center and sing the words to
the kids, or play them on the recorder. I taught myself how to play songs from
The Little Mermaid, The Jungle Book, Mulan, Beauty and the Beast, Lady and the
Tramp, and more. I would have a game I played called “Guess the Disney Song,”
in which I would play a Disney song and the kids would try to guess it. This,
of course, was made possible only when I had memorized enough songs.
At
the daycare center there was always a TV playing. The TV was almost always
tuned to Nick Jr., and Nick Jr. had a regular lineup of shows it aired, such as
Dora the Explorer. After listening to
each song on each show over and over again every time I came to the center, I
eventually memorized the words to the songs, and would sing those to the kids
as well. This impressed the daycare staff, who had listened to the same songs
and still could not recognize what the songs were when I sang them.
One
other useful skill was my knowledge of how to set up audio equipment. I
constantly brought my laptop, tape player, or speaker system, that I would move
throughout the child care center depending on whether or not I had to protect
my system from destruction by babies and toddlers.
Finally,
there was a certain level of trust that I could expect from the kids I could
not expect from my peers. I was automatically given the benefit of the doubt
with them. They would meet me and assume I was not weird, and since their
definition of being weird was different than the definition of being weird to
my peers or adults, and had a higher tolerance level for my eccentricities.
They also did not assume automatically that there was something strange about
my attempts to engage them, the way a few of the parents did before they came
to know me.
What
else did I learn about neurotypical kids from the daycare center? There are two
other things I will mention here.
First,
since I acted like the child’s age, I was not only treated like a child of
that age, I was given the same respect as a person of that age. I was
rarely able to successfully enforce a rule at the daycare center without the
help of a staff member. I also noticed that at this daycare center, you
couldn’t force a child to do anything. This is a stark contrast to the
environment of school, where kids are required to obey a teacher, regardless of
how they feel. My power as teacher was limited to their motivation—should they
cease to be motivated, they would walk away. Thus, I got to see the power that
teachers wield as teachers, and that children do not just passively obey anyone
unless they wield that power.
Also,
since I constantly switched from playing with 5-year-olds to 2-year-olds, one
of the 5-year-olds could not understand why I was playing such “babyish” games
with the 2-year-olds.
The
passive obedience of autistic kids who are trying to do the right thing may be
a disadvantage here, if the autistic child is trying to obey someone yet his
friends are walking away from that person. In January 2006, I was admitted into
the high school’s child development program as a Level 3 student. As part of
that class, I learned how to prepare lessons to teach the preschool students at
the high school’s laboratory preschool. When I started teaching in their
laboratory preschool, I would preview the lessons I was to teach at the child
care center. Except for one lesson, I could not get any kid to sit through a
preschool lesson at the center. Yet I was able to get kids to listen to my lessons
at the preschool quite well.
Why
is this important? Because it shows the nature of play. Since I was not the
teacher, and was playing with the kids, they were treating me as a playmate,
and thus would not play with me if they did not want to play with me. No child
would play with me if they did not want to. I repeat: no child would play with
me if they did not want to. This is a key point that we must never forget when
we are trying to teach play—that when we want to get autistic kids to play, we
have to teach them to want to play. Social interest has to come before you can
get meaningful social interaction. This might seem radical, but then, I could
not find a single child who did not play with me unless they wanted to at the
child care center.
Second,
there are differences between boys and girls of the same age. I am not
trying to offend feminists or anyone who believes in equality of the sexes. I
am just pointing out that girls were more likely to play some games and
vice-versa. And I noticed that the names of the games I would announce for the
kids to play would determine if more girls or more boys would come. Think about
it for a moment. When you think of American Girl Place, who do you associate
going there? Young boys or young girls? Young girls.
One
popular activity among girls was to see their names typed onto my laptop, and
then to see their names change from font to font on the screen, from a list of
over 100 fonts. If I announced this game, I would get mostly girls asking to
see their names on the screen. If I tried to ask boys, I would get some, but
most boys passed up the opportunity. Later, I learned this was because most
girls aged five have motor control to write basic words, whereas most boys do
not.
At
the same time, when I played T-Rex, I always played it with boys, and there was
not a single girl who ever was interested in playing T-Rex with Eric. The same
is true with playing trucks and pirates. At the same time, I did not meet a
single girl aged four or five that had not taken at least one ballet class, and
could not get a single girl to teach me any ballet steps when I asked her to.
And while I could play princesses with girls, I was never allowed to play dolls
with them, even when I brought one of my own dolls to the child care.
This
issue goes farther than preference of games between the genders. Girls soon
learn as they grow up what girl games are from their female friends, and boys
learn what boy games are from their male friends, and slowly these rules become
hard-wired into each kid. After a while it gets to the point where a boy who
plays a girlish game is made fun of. But there is a double standard here. There
was a lot less social cost for girls to play boy games than it was for boys to
play girl games. One girl, Teresa, had a best friend named Cole, and Teresa
would routinely play male games with her male best friend. But I did not see
any boy play girl games with a girl. I would play pirates with girls but never
played dolls with a boy.
Even
though these rules are quite arbitrary, they can be very important in
determining the social status of a child. An autistic boy who does not know
that he is playing a girlish game might get laughed at for doing so. In fact,
as kids gets older, boys who have friends with girls might get fun of just
because of their boy-girl friendships; without the safety of Integrated Play
Groups, Jamie and Will might have been teased by bullies for having that
friendship—I know I was when the one kid who was my friend in the fifth grade
was a girl who was willing to deal with my weirdness because she herself could
not walk.
And
I had this problem as well. At the age of eight, I was a fanatic of the
American Girls Collection. I would ask my parents to buy me the books for the
American Girl series. I read them very enthusiastically, and then saved my
allowance so I could buy one of the dolls for myself. I bought the doll of the
one American girl character I liked the most—Felicity—and still own this doll
to this day. That Christmas, I looked in the American Girl catalog and wrote
down a list of books written by the American Girl Library on my list of
presents for Santa. My mother protested and explained that I should not expect
those books because I was not supposed to like them. However, I got some of the
books I had asked for from Santa.
Ironically,
this proved quite useful at the child care center, since I was able to have a
nice chat with a little girl about the American Girls Collection if it
interested her. Even more ironic is that one of the very books I asked for on
that Christmas list, “More HELP!” is a book autism researcher Dr. Brenda Smith
Myles recommends autistic children should read to learn proper social skills,
as well as the advice columns in the American Girl Magazine, published monthly.
And
I made sure I got to know each child on a personal level—I asked their parents
what they liked to do, and always asked each child what school they went to.
This was important because whenever I met a child who went to my former
elementary school, I would always have an interpersonal conversation with the
child about what the school was like when I went there, and I made sure I
talked to them about the part they were going to play in their upcoming school
musical. And I was given special permission from the school to go and see the
kids perform on the day of the show.
So
I’m sure you’re wondering, why did it end? Why did I leave in June 2006?
That’s
because my success ultimately resulted in my undoing. You see, while I gained
social success with children, and became adored by them, it also opened me up
to suspicion. I’m a young man. As any daycare worker or teacher will tell you,
most workers in that field are female. So this made me stand out immediately.
Also,
I went entirely in cognito— no one knew about my status as an author and
presenter, and most of the parents did not know I have autism. I did this out
of fear I would be misunderstood if someone knew I had a disability. In the
end, I was misunderstood because people did not know I had a disability.
My
ending was sudden, and abrupt. In June 2006, I returned from the child care
center after a normal day. My mother informed me that she had just received a
call from the director of the child care center. Two complaints had been
made—one to the director of the center and to the fitness center. Both were
against me, by parents who did not like the fact that I was working there.
After learning about these complaints, I went to the center to discuss the
issue with the directors. Together, they told me the complaints in detail. The
first complaint was by a parent who felt that I was too friendly with the kids.
The other parent had stated that she was representing several other parents,
and had a list of complaints she then made. I let a child touch my beard. I
asked too many personal questions to the parents; such as what children liked
and disliked, as well as what the last names of the parents were, and the
addresses of the parents (even though I only remember asking that of two
parents, and that was to mail drawing projects to them I had made). And
finally, there was the suspicion of what I was doing there—in other words, why
was a young man working with kids without getting paid? Why wasn’t he in
school? And thus, what was his motive?
After
hearing the complaints, I was told I could not volunteer at the center anymore.
After leaving, however, dozens of parents came to my defense and openly stated
how unfair the decision was. One parent stopped coming as often because her child
no longer wanted to come to the daycare since I was gone. Other members wrote
letters asking for my return. In the end, a lot more people defended me than
complained against me.
At
the same time, all of those things used against me were the things that other
parents admired most about me—because I got to know their children personally,
their children were more compliant and willing to go to the center. And I asked
parents their last name to know what to address them by—I always addressed
parents as Mr. or Mrs., with no exceptions.
But
I was not exiled for long. A week later I was accepted as a stagehand for a
musical Broadway camp for individuals with autism and neurotypical kids, and
spent the summer as a painter, painting scenery 3 days a week for a production
of “The Music Man.”
As
I said earlier, my experience at the child care center got me accepted in the
high school’s child development program as a Level 3 Student. Last school year
I was accepted as a Level 4 Student, in the high school’s student internship
program. In this program you work with a teacher in a classroom. I was also
accepted as a lab assistant in the lab preschool. So I worked as an intern in
two kindergarten classrooms, and assisted a preschool teacher on a rotating
schedule. The teachers were quite aware of my speaking career, and agreed to
excuse any absences while I traveled for presentations.
At
the beginning of this speech, I asked, “What is the proper autistic friend?”
Now that I have talked about my work with young children, here’s what I can
say:
Autistic
people will always be autistic. Thus, we need to change our goal from trying to
create a normal friendship to just a friendship. We have to wake up and realize
that full normalcy is not what we are going to get.
Children
are not as judgmental when they are in front of adults as they are
unsupervised. This is one reason for the success of play therapy—the presence
of the adult commands a respect that would not be given if there were no adult
there. You do not tease the child with autism when Tara Tuchel is present.
Otherwise, Tara will send you to the principal’s office.
What
I saw at the daycare center is that the importance of a shared interest cannot
be understated in a friendship. The friendship between Eric and Steve was a
shared interest. They both loved dinosaurs, and while Steve was not as obsessed
as Eric, he was willing to adjust to Steve.
And
once Steve and Eric became friends, Eric was actually willing to adapt. I was
not able to have a reciprocal conversation with him, but he did with Steve.
Thus, as play therapists or as parents, we have to find kids who are willing to
adjust but also have a shared interest. Once the autistic child is able to
enjoy his friend, he might start branching out and playing something else. But
you have to stimulate the interest first. And the best way to do that is to tie
it to something the child is interested in—like alligators, maps, dinosaurs,
etc. Eric acted like a normal boy when he played with Steve, even when he was not
able to with Patrick, the basketball player.
Also,
there is a common misconception among parents and professionals that school
must be the place where kids meet friends. I have never understood this.
Kids go to school to learn reading, writing, and arithmetic. Where do
friendships come into this? Yet parents often get worried if their children are
not making friends in school. But if you actually try to socialize during
school, except maybe during lunch and recess, you get in trouble for not paying
attention in class. So how did school somehow become the place to make friends?
In
my opinion, while school is the place where kids do make friends, we should not
despair if a child is not making friends there. School might be a place to make
friends but it is an extremely difficult place to do that. It is there where
kids are the most judgmental, and kids must adhere to the status quo of their
peers. If you want to be friends your way, you’ll get made fun of in school.
But there are other ways of making friends. And why wouldn’t there?
Friends
who go to school don’t socialize in school—they can’t except during recess.
They socialize outside of school. If an autistic child is not making friends in
his class, then try to find other ways to do it. Thus, we see another reason
why Integrated Play Groups is such a good therapy—it is not only done in the
presence of an adult who can command respect from the children, it isolates the
kids in the therapy—autistic and neurotypical—from the pressures of their
peers. And that lightens the burden in itself, and allows the neurotypical
children to freely accommodate the autistic child without fear of being
rejected by their own peers themselves.
So
that is the proper autistic friend. It is a person who can enjoy his friendships,
and through that enjoyment he is motivated to adjust himself to his friend,
just as much as that friend is willing to adjust to him. But we have to know
when to back off. If an autistic child is being taken advantage of, we should
intervene. But not if the autistic child does something a little strange, like
give his friend a pencil for his birthday. What matters is not what we feel but
what the other friend feels. If the other friend wants a pencil for his
birthday, then so what if it’s a little strange? That makes the child a good
friend.
When
I was nine, I was obsessed with the American Girls Collection. This, of course,
was a weird obsession for a nine-year-old boy. My seven-year-old cousin’s
birthday was coming up, and I knew that she loved the American Girls
Collection. I wanted to buy her the book “Changes for Felicity,” a book in the
Felicity series about the American girl Felicity, but did not have the money
to.
So
I got it from the library, and retyped it for her on a computer. I printed it
out, and my mother and I went to Kinko’s and bound it. My mother thought it was
one of the weirdest things I had ever done. But my cousin Holly loved it, and
thought it was the best present I had ever given to her. And my mother saw
this, and realized it was not entirely weird after all. We need to remember
this when children with autism develop friendships. They will be developing
play cultures that might not make sense to us. But we have to realize that just
because it does not make sense to us does not mean it does not make sense to
them.
This
applies on a larger scale as well. If you look up the term “faux pas,” on
Wikipedia, you’ll find a list of faux pas per country. Here’s one of them—if
you are in Paris, do not bring wine to a fancy dinner at a Parisian’s house.
You will offend the person, since you have suggested that they are too poor to
provide their own wine, or that you do not like their wine. A Parisian has a
duty to provide the wine when he invites his friend to a meal at his house.
This apples throughout the rest of France as well. Yet in America, it is an
honor to bring wine to a fancy dinner.
Those
issues I mentioned in my examples are only issues if the children involved are
not willing to adjust. But adjustment should be both ways. We should not expect
the autistic child to adjust to us while we refuse to change, or vice-versa. As
Jeanne Lyons, the mother who talks about the importance of using music to teach
social skills, has sang: “Say hello. Say my name. Won’t you reach for me halfway?
Though our conversation my die, I will value that we tried.”
Tara
Tuchel is the co-author of the book “My Best Friend Will.” It is one of the
most beautiful books ever written. Jamie and Will have a genuine relationship
that is magical. Magical like any other friendship. But it is also a testament
to the fact that while Jamie and Will are best friends, their friendship will
never be normal. But it was made possible only by Tara and Integrated Play
Groups.
I
shall conclude by making a point about something Tara said in Providence, Rhode
Island, at the 2006 Autism Society of America conference. In Providence, Tara
informed the audience that for Will’s thirteenth birthday, he had a sleepover,
which consisted of three girls spending the night at his house. Obviously, the
whole audience laughed. So did I.
And
then I asked myself: Why was it so funny?
Because
that would be totally inappropriate if Will were not autistic.
But
was it inappropriate? No. Will did not see it was, and neither did the three girls.
Tara later pointed out that Will was scared that the girls would invade his
room and his personal space. So we see that that is not a problem. In fact, as
I pointed out, if Will were normal, you’d have the opposite problem.
In
conclusion, I believe that a proper friendship lies in the compromise between
our definitions of friendship, and the willingness of all parties to adjust for
the benefit of everyone.
Thank
you. I will now answer your questions.