Dr. Fred Volkmar on Asperger's Syndrome

DATE May 5, 2004 ACCOUNT NUMBER N/A
TIME 12:00 Noon-1:00 PM AUDIENCE N/A
NETWORK NPR
PROGRAM Fresh Air

Interview: Dr. Fred Volkmar talks about Asperger's syndrome
TERRY GROSS, host:

This is FRESH AIR. I'm Terry Gross.

If you're interested in how the brain affects personality and behavior and the
differences between how, quote, "normal people" and people with developmental
disorders are wired, I think you'll want to hear what my guest, Dr. Fred
Volkmar, has to say. But you'll be especially interested if you or anyone you
know has been diagnosed with Asperger's syndrome.

Dr. Volkmar is the primary author of the medical definition in the DMV, the
Diagnostic and Statistical Manual of the American Psychiatric Association.
He's a professor at the Yale University Child Study Center and directs autism
research at Yale. He's also the co-author of the book, "Healthcare For
Children on the Autism Spectrum."

Whether Asperger's is a form of autism is still being debated. Dr. Volkmar
says that children with Asperger's typically talk before they walk. Parents
are reassured by how bright they are, but their motor skills develop late.
Problems often become more apparent in preschool when these verbal children
have trouble communicating with others. I asked Dr. Volkmar if people with
Asperger's syndrome are usually high functioning and if they typically have a
special talent or area of knowledge.

Dr. FRED VOLKMAR (Researcher In Asperger's Syndrome; Irving B. Harris
Professor of Child Psychiatry): People with Asperger's syndrome in general do
not have mental retardation. That's one of the differences from autism. In
autism, probably about 65, 70 percent of people overall function in
intellectually deficient or the mentally retarded range. In Asperger's
syndrome, it's very rare for that to happen.

In terms of special interest in Asperger's, the man who first talked about
Asperger's syndrome was a man named Hans Asperger. He made the point that all
the children he described had very unusual special interests. The thing that
was unusual about the special interest was it was all consuming. The child
would have known all the trains into and out of Vienna, `The 6:15 stopping at
Leipzig and Salzburg,' or the child would, for example, have known all about
American gangsters. I've seen all kinds of things that kids were interested
in. That's one of the very typical, defining features of Asperger's syndrome.

GROSS: Now do you consider Asperger's syndrome to be a form of autism? My
understanding is that this is pretty controversial.

Dr. VOLKMAR: Now there's a lot of discussion right now about the best way to
think about this. Essentially, the world, unfortunately, turns into--in a
simple-minded way, the world can be divided into lumpers and splitters. The
lumpers want to see everything together, and there's a certain point to that
in a sense of--certainly in terms of the shared social difficulties. Children
with Asperger's syndrome have some of the same needs that children with autism
do. On the other hand, I would argue--in this case, with the splitters--that
the difference in Asperger's is that the much better verbal skills gives us
another route to try to help the child deal with their difficulties. It's
rather different than what we would think of as autism.

GROSS: I know three families who have children that have been diagnosed with
Asperger's syndrome. One of the reasons why I'm interested in this is that
some of the things that we just take for granted as being part of the human
condition, a desire to communicate with people, empathy, reading people's
faces and just kind of understanding the emotion that is being conveyed, are
not typically part of the behavior pattern for people who do have Asperger's
syndrome. So, you know, it's like they are kind of out--so outside of what we
consider to be, quote, "normal" and yet function pretty well. And it really
kind of makes you think so much about what's different. What are the
differences, like, biochemically or neurologically that result in this?

So let's start with the idea that a lot of people with Asperger's syndrome
seem to be lacking in what we would describe empathy and aren't interested in
talking for pleasure, in communicating for pleasure. Could you describe an
example of that?

Dr. VOLKMAR: Well, it's interesting. One of the problems is kids with
Asperger's like to talk, but it's a very one-sided talk. So it's kind of a
machine gun. You feel almost assaulted sometimes; that you hear more and more
and more about whatever the child's interest is. But then you don't have a
chance to take a turn, so that there's this funny sense of not connecting with
the child. It could come across, especially initially, as somewhat humorous.
When I go around and give conferences, when I have a few videotapes of
children, adolescents and adults with Asperger's, I warn the audience ahead of
time that they may laugh and that the parents in the audience may feel upset
that people are laughing and that both groups are right; that the thing that's
very odd is that you have this sense of--it's almost like a "Monty Python"
skit sometimes, that people talking past each other. And it's not necessarily
meant to be funny, but to most of us just watching it, at least at the
beginning, it seems kind of humorous because you think it's a put-on.

The kinds of things that kids come up with--for example, I had a child not
very long ago, I was asking him--a child we'll call Jimmy. I said, `Jimmy,
tell me, what would you like to be doing in 50 years?' And he looked at me,
he said, `You know, I don't know, but you're going to be dead.'

GROSS: (Laughs) That's a kind of inappropriate thing to say, isn't it?

Dr. VOLKMAR: Right. Right. So, you know, you see all kinds of things of
that kind. And it's always surprising. I had one boy who studied stars and
planets. He knew all about the constellations. He was really, really into
astronomy. And he said to me one day, `Dr. Volkmar, I've only got one
question that I've never been able to find the answer to.' And I said, `Yeah,
what's that?' He said, `You know, I've learned all about the stars and the
planets and the names and the constellations. How did the scientists ever
discover the names to the stars and planets?' He had no idea for the human
construction; that, you know, what we see as the Big Dipper, other people saw
as the Great Bear, other people saw as something else, that--there's no sense
of that very interesting kind of awareness of the human condition.

GROSS: Hmm. Is there any scientific explanation of what creates this kind of
communicative difference? Is there something going on in the brain? Is it
some kind of, like, biochemical thing?

Dr. VOLKMAR: Actually, there's some data that would very strongly suggest a
big role for genetic factors. In our research, when we take a very strict
definition of Asperger's and look among family members, about one-third of the
time we find another family member with a very significant social disability,
often males, interestingly. Asperger's is more likely in boys than in girls.
It's interesting the genetics may even be stronger than autism, and autism is
one of the most strongly genetic disorders.

We also know a little bit about the way the brain works in Asperger's. People
are developing very interesting techniques for understanding differences in
terms of how the brain is wired. So, for example, one of the things we've
been interested in is looking at a part of the brain called the fusiform
gyrus, which is the part of the brain that most of us, I'll say,
activate--turn on; that basically it's the part of the brain that when we look
at faces it switches on. And it's interesting that children--high-functioning
kids with autism and Asperger's, when you show them faces, that part of the
brain does not turn on. The part of the brain that does turn on is the part
of the brain that the rest of us use for looking at objects.

GROSS: So what does that tell you? How do you interpret it?

Dr. VOLKMAR: Well, I think it's--among other things, it's telling us that
there's a whole different brain system than the rest of us are using; that the
wiring is fundamentally very different. I'm not saying better-worse but just
very different; that faces don't have the specialness. And, in fact, we would
argue that one of the problems for children with Asperger's and to some extent
even for autism is that that lack of a connection to other people, that lack
of the interest and the specialness of the other person is the fundamental
problem and, indeed, may reflect something about how the person's brain is put
together.

GROSS: You know, a lot of us might feel sorry for somebody with Asperger's
syndrome, who is missing this connection to other people and the joy that you
can have in connecting through touch or conversation with another person. But
do you think the people you know and the children you know with Asperger's
syndrome feel that they're missing anything?

Dr. VOLKMAR: I would say one of the things that's often very poignant,
especially about adolescents with Asperger's and young adults, is the desire
for human connection, the desire for relationships, the desire for a
girlfriend, a desire for some element of human contact and relationship. I
think one of the things that's--in some ways it's rather different than even
higher-functioning autism. One of the things sadly is that often in
adolescents, kids with Asperger's become depressed, I think, partly as a
result of that.

GROSS: Hmm. If a person, say, doesn't relate through conversation well and
has that kind of very one-sided, almost obsessive form of conversing, does it
help to work with them on that, to kind of teach them the structure of
conversation, the give-and-take of conversation?

Dr. VOLKMAR: Absolutely. And there are many different things you can do.
Speech pathologists, psychologists, psychiatrists--there are a lot of
different folks who can really teach very explicit things about having a
conversation. For example, even having the child periodically say something
like, `Am I talking too much?' or `Is this more than you want to know?' That
gives them a chance to get some feedback, which otherwise they never would get
because they don't pay any attention. And it structures things. It seems a
little odd and stilted and it is a little odd and stilted, but it gets them
feedback.

GROSS: My guest is Dr. Fred Volkmar, a professor at the Yale Child Study
Center and an expert on autism and Asperger's syndrome. We'll talk more after
a break. This is FRESH AIR.

(Soundbite of music)

GROSS: (Joined in progress) ...and he's an expert on Asperger's syndrome and
co-author with his wife of the book "Healthcare For Children on the Autism
Spectrum."

Now a lot of children with Asperger's seem to have a lower threshold for
sensory input. You know, like loud sounds are more upsetting than they would
be to the average person. They might be pickier about foods, I guess other
things along those lines. Can you talk about that a little bit and how it
connects?

Dr. VOLKMAR: Sure. You commonly see children with Asperger's who have
unusually sensory experiences. They can't stand certain kinds of cloth, for
example, or clothing. They'll only eat certain kinds of food. I've seen
children who would only eat white food. I've seen children who would only eat
french fries from a particular fast-food restaurant. These are very common.
They're, of course, of great concern to parents, and it can be a very big
problem in terms of schools.

I would say in terms of our understanding of them, interestingly enough, I
would tend to lay the blame on the social difficulties in the sense that I
suspect a lot of us very early in life learn from our parents and our--because
we're so socially connected to them, that we basically gate out a lot of
sensory experiences that we learn just are irrelevant. The problem for people
with Asperger's, and this is also true in autism, is that those same things
that the rest of us could gate out, they can't help but focus on, they can't
gate it out. It's impossible for them to ignore it.

GROSS: Is Asperger's syndrome often confused with obsessive compulsive
disorder or depression or attention deficit-hyperactivity disorder? Because
some of the symptoms are the same.

Dr. VOLKMAR: Yeah, very good point. And, in fact, one of the things that was
fascinating when we first got into the--my colleagues and I started working on
Asperger's, we had an inquiry from the Learning Disabilities Association of
America if we could send them some information on it. And they published a
little article, and very promptly we had 600 parents from around the country
who wrote to us--this was in the very early days of Asperger's--to say they
had a child they thought probably had Asperger's. And many children were
misdiagnosed and many children still indeed are.

Interestingly enough, I would say in school-age children, the kinds of things
that often are identified as problems are attentional difficulties. The
school, for example, will see a boy who's very verbal. They also see him as
being kind of hyperactive. He talks back to the teacher. They may think of
him as being a bad boy. They may think of him as having attentional problems.
As time goes on, especially by the time children get into adolescence, the
depression often becomes more striking. But, in fact, the interesting thing
is the Asperger's is there throughout, and it's not so clear to me how central
these other things are, like the attentional problems and the depression. I
don't think they're the core aspect of Asperger's itself.

GROSS: Do you think that Asperger's syndrome is misdiagnosed a lot and that,
therefore, parents or teachers often do the wrong thing?

Dr. VOLKMAR: The commonest thing, I would say, is--the problem is people just
are impressed by the child's verbal ability. There's a television--I'm sorry,
a radio station in New York that's always broadcasting ads for some kind of
verbal learning program. It basically teaches you vocabulary. And the joke I
always tell parents is it's kind of like, you know--the ad goes, `Speak like a
Harvard graduate,' as if anybody would like to speak like a Harvard graduate.
I can say that as a Yale person. But the point is that we make our judgments
about people's intelligence based on their verbal abilities. And these are
kids who are very verbal. And the problem is that the teacher will assume,
because of the child's very good verbal ability, that all their other skills
are at that level. And the reality is they're making a very bad judgment.

I just literally this week saw an eight-year-old boy--an eight-year-old boy,
OK?--in terms of his chronological age, his verbal abilities were at the
12-year level, his non-verbal problem solving was a little below his age
level, so he's already got a four-year gap there. And his social skills were
at about a two-and-a-half-year level. So, you know, if you just go by his
verbal, you'll think, `Oh, he's like a 10-year-old. He's very bright,' and,
in fact, he's in some gifted classes. But the problem is if you look at other
skills--and verbal skills are not the only ones we need in school; we need
non-verbal ones as well--in fact, he's a little behind his age level. If you
look at his social, he's dreadfully behind where he should be. So which is
the real boy? Well, they're all the real boy. It's just different aspects.
But it's very common for people to be misled by the better verbal abilities.

The saddest thing and the thing that, unfortunately, we see a lot is the
child's verbal ability means that the teacher assumes that he's a bad boy
because he talks back. Asperger himself wrote about this. The child talks
back because that's what the child's strength is. That's what they can do is
talk back. That's all the child knows. As a result of talking back, the
school will decide, `Well, bad boy.' And they'll put him in a class for
really bad boys, but the other bad boys in the class are really bad boys and
they're very socially clued in. So then what will happen is they will set
this child up, who's very socially clueless, to do all kinds of things. So
you have the perfect victim put in the class with the perfect victimizer.

GROSS: What do you think is the right place for a child, like the
hypothetical child that you're describing, who's very verbal but isn't up to
speed in terms of social skills or other skills?

Dr. VOLKMAR: Many times children can be supported in regular academic
settings, if the schools committed to doing it. What you then need is to make
the provision for helping the child with areas that are going to cause
trouble. So there has to be, for example, teaching them social skills. Often
these are children who have handwriting problems. They have so-called
graphomotor difficulties because they have motor issues. So you have to cope
with that. There may be some very specific learning difficulties that are
present.

And, finally, you have to be aware that the situations that are going to cause
the child the most trouble are the situations the school will usually think
of as last on their list of situations that will cause the child trouble. So,
for example, there's almost a Holy Trinity of mainstreaming opportunities for
gym, recess and cafeteria. Those turn out--that's the places where almost
inevitably children with Asperger's are mainstreamed, and those turn into the
three--those are the three worst places to mainstream a child with Asperger's.

GROSS: Why?

Dr. VOLKMAR: In the recess, for example, not very long ago I had a very
observant teacher who had gone out at recess time, and she had seen this boy
in her third-grade class who was sitting in the corner of the school yard
breaking rocks against each other. And he did this for several days in a row,
and that's how he spent the whole of the recess. And so she called the mother
and the mother called me and I got back to them. And I said--I made the great
observation, `Why don't you ask him why he's doing this?' And so the teacher
did, and he said, `You know, Mrs. Smith, I've learned that if I stay in this
corner at recess and just knock these rocks together, I don't get into any
trouble.' And, you know, she realized that having him out at recess by
himself with no support was not such a good move. He really had come up with
this as his adaptation as a way of avoiding mixing it up with other kids
because he had so much difficulty without the support of an adult.

GROSS: Oh, I'm just thinking about how painful it must be for a child like
that to be thrown into, you know, the gym class or cafeteria or recess.
That's all about...

Dr. VOLKMAR: Absolutely.

GROSS: ...like social skills and physical skills which they don't have.

You know, since children with Asperger's syndrome don't usually feel empathy,
as we understand it, for other people, what about their own sense of pain,
when they're hurt? Is that any different?

Dr. VOLKMAR: You sometimes will see children where the parents will say
things like, `The child doesn't complain much when they're in pain.' Most of
the time there is some basic awareness. It is a problem, though. I mean, I
would say this: It comes up more commonly around feelings like, for example,
anxiety or depression. Anxiety is a common one in the sense of the child may
not really quite understand what it feels like to be anxious. I mean, they'll
be anxious, but they have trouble putting the word to it because they don't
know what the experience is like. And, again, I would argue that because of
the social difficulties, because of the difficulty relating to other people
and observing other people, as a result, they themselves have trouble in terms
of their own sense of themselves, their own sense of their body, their own
sense of themselves in space, their own kind of organization in terms of their
feelings.

So sometimes I've actually spent time helping a child become more aware of
their feelings, talking about, for example, `How do I know that I'm anxious?
What does my body feel like? My heart is pounding, my skin is sweating. I
feel like I'm breathing very fast. Oh, I must be anxious.' That they can
really work backward from those experiences of their body to the feeling.

GROSS: Now more boys than girls have Asperger's syndrome. What I find
interesting about that is if I were to just use, like, stereotypes of male and
female behavior, the typical patterns of autism are in some ways highly
exaggerated versions of stereotypical male behavior: not as much empathy as
girls have; maybe very verbal but maybe a little self-absorbed in the
conversation; prone to obsession about facts. I know I'm being unfair here,
as all stereotypes are, but still they tend to be more male than female
behaviors. You know where to e-mail me if that makes you angry.

Dr. VOLKMAR: Right.

GROSS: And, anyways, what do you make of the fact that there's more males
than females with Asperger's syndrome, and does that have any connection to
larger patterns of behavior?

Dr. VOLKMAR: That's a very good question and one that really needs a lot more
research and study. That being said, it's clear that basically for almost all
of the developmental disorders, with some notable exceptions that are always
very interesting--but for almost all the disorders, for example, language
disorders, attentional problems, there's a male predominance early in life.
And it probably is because males, as a group, are somewhat more vulnerable
than females.

For autism, for example, we know that males outnumber females, oh, four to
five to one. Interestingly, when a girl has autism, often she's more severely
affected, which kind of makes us think--one guess is that perhaps it takes
more of whatever it is to cause the autism in the girl. So that there are a
lot of interesting, tantalizing leads. There'ss not a tremendous amount of
information in terms of mechanism. It's a very interesting question. There's
some growing body of work looking at brain differences in terms of things like
processing social information, processing feelings. That may help us
understand more about what it's like.

GROSS: Dr. Fred Volkmar is a professor at the Yale Child Study Center. His
latest book is "Healthcare For Children on the Autism Spectrum." He'll be
back in the second half of the show.

I'm Terry Gross, and this is FRESH AIR.

(Soundbite of music)

(Announcements)

GROSS: Coming up, more on Asperger's syndrome with Dr. Fred Volkmar. And
we'll talk to Michael John Carley, who was diagnosed with the disorder when
he was in his mid-30s. It helped explain a lot about his life. His son has
Asperger's, too.

(Soundbite of music)

GROSS: This is FRESH AIR. I'm Terry Gross back with Dr. Fred Volkmar. He
heads autism research at Yale University and is a professor at the Yale Child
Study Center. He's an expert on Asperger's syndrome, a developmental
disorder. Children and adults with Asperger's are typically very verbal but
have difficulty communicating. They're usually physically awkward and become
obsessed with one subject or area of knowledge.

At what age is Asperger's syndrome usually diagnosed? Like, when can you
actually start to recognize the symptoms?

Dr. VOLKMAR: The youngest child I think I've seen was probably a little over
three years of age. More typically it's five- and six-year-olds.

GROSS: And what starts to be noticeable at that age?

Dr. VOLKMAR: Usually the problem is problems with peer interaction. The
parents have been very reassured because the child is so verbal, and adults
make a lot of allowances for little children. It's when the child is exposed
to other peers, typically in preschool or kindergarten, that the pedal hits
the metal. And the problem there is the child is very inappropriate socially,
will come up to a total strange child, another boy, and hug him. And that
turns out not to endear you to other four-year-old boys, who are typically
developing. They won't be able to sit in circle time. They won't have any
idea that the rules apply to them. So it's that kind of thing that often
brings the child to first attention.

GROSS: And then once you get to that point, then the question is: But is
there action you should take to try to bring your child more into the
mainstream and teach them more mainstream behavior?

Dr. VOLKMAR: Absolutely. And, again, you want to be guided, I think, by a
sensible appreciation of what this child's strengths and weaknesses are. I
think that's one of the things that's very important. It's easy to notice the
strengths in terms of the good verbal abilities. Often we don't appreciate
these are children who have real significant learning challenges in other
areas. Non-verbal tasks can be very difficult, things that involve a motor
aspect, fine motor skills. Handwriting can be very difficult; gross motor
activities--play, for example.

I've had parents whose idea of teaching their child social skills, a child
with Asperger's, is to try to enroll them in, you know, youth football or
youth baseball. The problem is you're then going to multiple weaknesses of
the child because these are team sports; they're very, very, very social and,
also, there's a tremendous motor aspect, so that you're just setting the child
up to fail. So that, again, if you were going to be guided, I think, by the
child's strengths and weaknesses, you would try to find a sport more like
swimming or Tae Kwon Do. Even tennis is a little better in the sense of at
least it's dyadic. So that, again, the kinds of things that people try to do
really ought to be guided by an appreciation of what the child's strengths are
as well as their weaknesses.

GROSS: What are some of the typical mistakes that are made in diagnosing
children who actually have Asperger's syndrome?

Dr. VOLKMAR: Well, many of the things that we do in terms of our ordinary
work with children work just fine. On the other hand, I think one of the
mistakes sometimes is people don't pay perhaps as much attention either to the
reality of what the child says, or conversely, they sort of miss the forest
for the trees. For example, I can think of one of the psychology people I
work with, who's a wonderful woman in training, and she's just a marvelous
person, and she's just learning. And so one girl I saw with Asperger's was
being tested by this psychology trainee. In the course of the testing the
girl with Asperger's was shown a picture of--I think it was an upside-down
triangle or some such. And the girl--I'm watching this from behind a one-way
mirror. And the psychologist is doing the testing, and the girl says, `Oh,
look, it's a vetner(ph).' And the psychologist says, `OK.' But then, you
know, she writes down `vetner,' but she wants the girl to do whatever it is,
the little block task, and so she moves right along. And so then when she
came back to talk to me, I said, `Go back in and ask the girl what a vetner
is.' And so the girl explains--do you know what a vetner is?

GROSS: Are you asking me?

Dr. VOLKMAR: Yeah. Do you know what a vetner is?

GROSS: I have no idea what a vetner is.

Dr. VOLKMAR: Exactly. Neither did I. That's why you ask, right? And
that's what she should have asked. So the girl explains, `It's a cow.' And
she pulls out her book of cows. `It's a cow that, on its flank on both sides,
has an upside-down triangle.' And so the psychologist wouldn't have known
'cause the girl was being very, you know, polite; she was not going off into
her special interest--it just slipped in a little bit there.

I've also seen people try to do kind of typical things in terms of assessment.
So, for example, the child seems a little loquacious, they seem a little
pressured in terms of their speech, you wonder how much they're in touch with
reality. And so sometimes people will do things, like they'll get out the
inkblots, the Rorschach cards. It's meant to be a very unstructured thing,
and people--you look there, and you see bats or giants or whatever. And,
basically, the fundamental notion is if you're a little crazy, you'll say
crazy things because that's what you see in it. So this one situation, we had
a girl, and the trainee was, again, very interested in the girl--decided,
because the girl was so loquacious, that she would get out her Rorschach
cards. It's turns out this girl's thing was protozoans. And so guess what
she saw in every single Rorschach card?

GROSS: Protozoa.

Dr. VOLKMAR: You got it.

GROSS: Right.

Dr. VOLKMAR: She saw an amoeba, she saw a paramecium. And I said to the
psychologists, `Of course that's what she's going to see. You know, that's
her thing. You know, what do you expect?' So it's things like that that
sometimes people make mistakes. The other big mistake, as I say, is to have
people ignore the fact that the child has real learning disabilities. Because
they are so off-put by the child's great verbal skills, they don't pay enough
attention to the difficulties in the non-verbal area.

GROSS: When you know that a child has the syndrome, and you could see that
they have a special interest, even if that interest strikes as you weird,
eccentric and unimportant and uninteresting, should you still, do you think,
encourage it?

Dr. VOLKMAR: Well, you know, it's a very interesting question, and, indeed,
Asperger himself speculated that some of these children, as adults, would be
able to follow their special interests. And to some extent that happens. I
would say as a practical matter, often the special interest comes to dominate
the family's life, and there often needs to be some attempt to control it,
control it in the sense of either localize it in time or space but to have it
so that it does not dominate to the extent that the child is really excluded
from other opportunities. There can be real challenges sometimes, depending
on the nature of the special interest, how you can get it into the classroom
and the curriculum.

One of my favorite stories--a few years ago there was a young man, who now is
a young adult, who I first knew probably when he was, oh, seven or eight, and
his thing is snakes. It's always been snakes and probably always will be
snakes. And he had met one of my colleagues, who was a speech pathologist
from England, and he talked to her about the dreaded puff adder; then he met
my colleague Ami Klin, who's from Brazil, and he talked about to Ami about the
giant anaconda of Brazil. And then when I came in, the first thing he said
was, `Well, thank God, at last, an American.' And then the second thing he
said was he wanted to talk to me about the endangered pygmy rattlesnake of
upstate Connecticut. And so this kid's--snakes has always been his thing.

So in my state--and I think it's the sixth or seventh grade--all of a sudden
there's a unit on American history. And his school, which was a wonderful
school, was a very well-motivated school and worked very well with
him--they're coming up to this unit in American history, the highlight of
which is the battle of Gettysburg. Now the problem is this child had
absolutely zero, zilch, nada interest in the battle of Gettysburg--I mean,
really none. And so the teacher and the mother called me, and we had a little
phone conversation about what in the world they were going to do because this
was the highlight of the teacher's year. This was her--this was it. She was
going to teach the children about learning, about research skills, about
reading maps, about American history. And it was all going to come together.
There were going to be school presentations. It was a big deal.

And so we talked for a while, and I had this great--one of my occasional
inspired great moments of thinking and said, `Gosh, I bet there were snakes at
the battle of Gettysburg.' And the teacher said, `Oh, my gosh, I'd never
thought of that.' So the boy's project was `the snakes of the battle of
Gettysburg.' His whole thing was--'cause, you know, it turns out Robert E.
Lee is down by the creek, and he's going to see the dreaded water moccasin.
Meade is on top of the, you know, Cemetery Ridge or wherever it was, and he's
going to see the common garter snake. And then we've got Pickett's Charge,
and what are they going to see charging up through the cornfield?

And so he had to learn about maps. He had to learn a fair amount about the
various people and where their locations were and where they were moving. And
the principal actually called me afterwards to say, you know, `This is the
only time in all these years when this kid has been so interested in snakes
that it was even semi-functional.' And he actually got to present his thing
for the whole school. Because people had heard about snakes over the years,
they were sick of hearing about the snakes, but this was close enough and they
enjoyed it. So that if you can find some way to tie it in, to make it
functional--it's not always as easy as I might make it sound, unfortunately.
But when you can do it, it's a great thing.

GROSS: We've been talking about children with Asperger's syndrome, and, after
all, you are a child psychiatrist. But I'm wondering if you've worked at all
with adults and if any of the issues associated with the syndrome in childhood
can be overcome as adults?

Dr. VOLKMAR: A very good question. Interestingly enough, it turns out in
this country to be a child psychiatrist, you have to be an adult psychiatrist
first. So that only makes it a little harder to become a child psychiatrist.
So, in fact, I've seen a lot of adults. Sadly, I think one of the
things--many adults, of course, were missed because the awareness of
Asperger's was quite limited. So there's a whole, you know, host of adults
out there with Asperger's who were not picked up and diagnosed and who did not
get services and who may, for example, not even now realize that this is
what's wrong with them. They sometimes have persistent difficulties in terms
of feeling depressed. Many of them, however, marry and go on to have very
productive lives. So there seems to be a range of outcomes. There
increasingly are more and more books and other resources out there for people
who are adults. There's now some organized chat rooms and parent support
organization online. So there are more and more things out there. But,
unfortunately, it's a relatively recent phenomenon in terms of adult
recognition of Asperger's.

Sadly, in our country we have not done a great job of providing for the
special needs of higher-functioning people with social disabilities. This is
true for people with autism as well. In most states the way you qualify for
special services as an adult is if you happen to be mentally handicapped or
mentally retarded. If you're somebody with Asperger's, who's got an IQ in the
normal range, even if you're quite disabled, you usually don't qualify for the
usual kinds of services.

GROSS: I know some people who have some of the symptoms of Asperger's
syndrome, but they don't have it to the extreme that I think people who
actually have the syndrome do. But they have that kind of constellation of
issues. Is it possible to have, like, a mild case of Asperger's syndrome, a
touch of Asperger's syndrome?

Dr. VOLKMAR: Well, you know, I think one of the things--in some ways, it's
easier to talk about this with autism, where we have even more of a research
track record. But I think the same thing will be true in Asperger's syndrome.
In a funny, somewhat paradoxical way, as we've gotten better and better and
better in terms of thinking about what we really mean by autism--very strict,
hard-core definitions of autism--in a funny way, we're also now much more
aware of the broader range of children who have some of those difficulties but
not all of them. I think as we find genes, which likely will happen over the
next couple of years, for both autism and Asperger's syndrome, this will all
make much more sense. We may, for example, discover there are, let's say,
five or six genes that cause autism, and you have to have all five or six.
Let's say if you have two or three of those genes, maybe you have some little
oddity or quirkiness. As we get into it with actual genes and can relate the
genes to things in the brain, we'll be able to do a much better job of
understanding this. There's no question it's a very interesting area right
now for research.

GROSS: Well, I want to thank you so much for talking with us.

Dr. VOLKMAR: You're welcome.

GROSS: Dr. Fred Volkmar is a professor at the Yale Child Study Center. His
latest book is a guide for parents called "Healthcare for Children on the
Autism Spectrum."

Coming up, we talk with Michael John Carley, who was diagnosed with Asperger's
syndrome four years ago after his son was diagnosed. This is FRESH AIR.

* * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * *

Interview: Michael John Carley discusses being diagnosed with
Asperger's syndrome as an adult
TERRY GROSS, host:

We've been talking about Asperger's syndrome, a developmental disorder that
was only recently recognized. My guest, Michael John Carley, was diagnosed
with Asperger's four years ago when he was in his mid-30s. It helped explain
a lot about his life. Now he heads an education and support group for people
with Asperger's called GRASP. He's worked as the UN representative of the
group Veterans for Peace and directed the group's Iraq Water Project. He's
also written several plays and is a part-time, overnight classical music
announcer on the public radio station WNYC in New York.

Michael, how were you first diagnosed with Asperger's syndrome?

Mr. MICHAEL JOHN CARLEY (Diagnosed With Asperger's Syndrome): Well, my son
when he was two years old started to exhibit a lot of the usual tell-tale
signs on language issues; there were some motor skills issues. And so my
wife at the time and I, you know, started him on that battery of tests and
process towards the diagnosis, which includes hearing tests, IT; it includes
speech therapy, play therapy. And two years later he was diagnosed with
Asperger's syndrome, and exactly one week later I was diagnosed with it. And
the reason for this is, really, just that once they start to key in on the
kids, it's a genetic thing, I think most everybody agrees. And so,
inevitably, you know, the clinicians that are responsible for this diagnosis
are starting to look at Dad out of the corner of their eyes, and so one thing
leads to another.

GROSS: Were you surprised to be diagnosed yourself?

Mr. CARLEY: Initially, when the idea first came forth, yes, the whole
suggestion of it just seemed, you know, too ridiculous. You know, we regard
this as a form of autism, and here I was somebody that had done things, had
lived a life, etc. But I also had known that--I'd always suspected that, you
know, I really didn't have that sense of shared experience with other people
that I had wanted and yearned for in my life. And the more I started to look
into it, the more it made absolute sense in a real epiphanal, you know, sort
of way; I mean, really hitting you like a ton of bricks. And so by the time
that the official diagnosis came about, you know, it was really etched in
stone that this was obviously what had been going on my entire life.

GROSS: What were some of the things that the diagnosis helped explain to you
about yourself?

Mr. CARLEY: Well, really, just, you know, it's--the whole notion of
personality comes in later. I think, first off, what you go through when you
get a diagnosis so late in life is that you have to re-examine so many
incidents in your history. You know, you have to re-evaluate and look at
everything and say, `So that's why people thought that I was being a jerk, and
that's why people thought that I was being a tell-it-like-it-is guy.' You
know, you're always surrounded by this negative and this positive iconography,
but you also know now they were all wrong, both the positives and the
negatives. Nobody had you pegged right.

GROSS: What was most confusing to you about, quote, "normal" behavior and,
quote, "normal" conversations and social skills?

Mr. CARLEY: Small talk, especially. I never was very good at small talk. I
never understood it. I never understood that when people would ask me about
something that I was interested in and I would, you know, completely go off
because I was, you know, so in love with this particular, you know, study or
item or something like that, and then people would roll their eyes, and I
would feel, `It's not fair. You asked me what I felt about this. Why are you
rolling your eyes sarcastically?'

Pettiness, I think, is something that is very anathema to all of the people in
our community. It's just something that we don't understand. And in the
support groups that my organization runs, we really try to point out to
individuals on the spectrum what pettiness is because, really, when you
deconstruct it, it's something that we instinctively do not understand. And
it's something that we need to understand because not only is it something
that, you know, is a stumbling block for us, but it's an unfriendly creature
and we need to know how to navigate around it and not to take it too
personally.

GROSS: Now you've written plays, some of which have been produced. Writing
plays seems to go against some of the typical Asperger's syndrome symptoms, as
I understand them--lacking in empathy, talking obsessively about your passion
but not being very interested in what others have to say, not understanding
the pleasures of conversation, not comprehending humor. When you're a
playwright, you're writing conversation. Hopefully there's some humor in it
and hopefully you have empathy with your characters. So how do those square?

Mr. CARLEY: That's an excellent question, and there's an answer for it, and
that is that, really, one thing that is enormously helpful to all individuals
on the spectrum--we see about--you know, we have about 400 people in the
Manhattan support group. I'm actually not digressing, trust me.

GROSS: (Laughs)

Mr. CARLEY: And so many of them that have had more success in being able to
process what other people's feelings are have had a theater background. They
may not have succeeded in that theater background, but it's a real light
motif, I think, especially the actor training that anybody has to go through
to learning how to be in somebody else's shoes. And there's another side to
the theater training that's another dodged bullet, even though at the time I
didn't know I was dodging bullets. And that's the physical training that you
go through, because a lot of us have motor skills issues. And I had real
issues with my hands and controlling my hands. And the physical discipline
that you have to, you know, accrue as an actor really, really helps to
compensate for some of those motor skills issues, even if, you know, the actor
next to you is doing 10 times better with his hand control than you are and
you're getting mad about it at the time.

GROSS: But if you don't really like small talk and conversation, and empathy
isn't your thing, why would you gravitate to writing plays in the first place?

Mr. CARLEY: Well, I think no matter what--you know, I always grew up as,
you know, somebody who, you know, selfishly perhaps, you know, felt that, you
know, I had something to say. But the empathy quotient, I think, is more best
answered by seeing my plays. They're really ideas, and they're arguments of
ideas that get thrown around. You know, I was never a good student of
philosophy. I would just, you know, pick up a philosophy book and, you know,
read a sentence or two and be able to, you know, just grab just one idea, just
one idea and then really be able to put, you know, some dramatized discourse
of it down on paper.

And I think that in my plays, what I would do to compensate for the Aspergian
sense, I could pick up and give, you know, class distinctions or economic
distinctions or racial distinctions and the dialogue and the vernacular that
people hear because I had a very good ear. But I think when it comes time to,
really, people speaking from inside their souls, you know, that I actually
just didn't do that. I actually just put certain ideas and certain arguments
into certain characters, and very mathematically matched them up with that
particular economic or racial, you know, characteristic and just let the math
do its work.

GROSS: Now you worked with the group Veterans for Peace. Are you a veteran?

Mr. CARLEY: No, I am not. I was, as matter of fact, one of the few
non-veterans that worked with the group. My loophole into them was that my
father was killed in Vietnam. And this actually has some of the reason why so
much of my, you know, shall we say, Aspergian tendencies growing up were so
misinterpreted, because, you know, I grew up amidst the iconography of the
Vietnam War. I had people from the left telling me my father was a murderer.
I had people from the right telling me things about patriotism and God, which,
you know, I just didn't really get and didn't really understand and didn't
really believe in, you know, although I respected their beliefs. And so,
inevitably, I really had to I think--and this is hard to say, but really tune
off those adults in my life, but at the same point acknowledge that all of my
behavioral differences, when I was going to the school I was going to up until
ninth grade, which was not a good institution for me to be at--that they were
being interpreted as some sort of rebellion because of my having lost my
father in the Vietnam War. And it was a very easy answer.

As a matter of fact, I was going through, you know, huge school difficulties
in third grade, and the school finally said to my mother, `Look, you have to
get this kid a psychological evaluation.' And I have that psychological
evaluation and I use it in some of the speeches that I give at conferences,
because it's very fascinating in the sense that when they document my
behaviors and when they look at exactly some of the things that I'm doing in
their tests, they're actually quite accurate. And, you know, anybody looking
at this today would say, `Asperger's, easy.'

GROSS: My guest is Michael John Carley. He heads an education and support
group for people with Asperger's syndrome called GRASP. We'll talk more after
a break. This is FRESH AIR.

(Soundbite of music)

GROSS: My guest is Michael John Carley. He and his son were diagnosed with
the developmental disorder Asperger's syndrome four years ago.

What are some of the ways that you think Asperger's syndrome may have
interfered, if at all, with relationships, with intimate relationships, in
your life?

Mr. CARLEY: Well, it always made me bad at flirting, and it always meant
that, you know, I was never going to be a good dancer or anything like that.
You know, one of the things we tell all the folks that we have, you know, is
avoid the bars, please avoid the bars. Please don't try and pretend to be
like the people who wink in beer commercials. Please don't do that. You'll
fall on your face. There's an inevitable banana peel somewhere in your
crystal ball.

But I think that, you know, one of the things that doesn't really get talked
about sometimes is that there are actually some attributes that don't get
developed enough, such as, you know, we're known for being an inordinately
honest people--you know, sometimes, obviously, to a fault. We say what comes
into our heads, and sometimes it's very inappropriate. But this can be
compensated by education. And, for the most part, a lot of the relationships
that I did have were based on people looking at me, seeing, you know, a
certain amount of, you know, passion that I was putting into whatever work
that I was putting it into, you know, admiring me because of that and not
because I wore the right clothes and, you know, in conversing with me
realizing that I wasn't going to be somebody who could, quote-unquote, "play
the game." And that's attractive to a lot of people. And it unfortunately
doesn't get developed enough in the adults that we have.

GROSS: Now your son has Asperger's syndrome.

Mr. CARLEY: Yes.

GROSS: Did you recognize any similarities, or do you recognize any
similarities between his behavior and yours?

Mr. CARLEY: A plethora. He's a twin in so many ways, behaviorally and in the
way in which he's processing thought, processing experience. And it's a joy
to raise him because I know that--you know, there's a good and a bad to being
diagnosed late. And the bad is obviously that you would have known yourself a
lot better early on, I think. But the good is that you avoided so much
negative iconography. You know, people weren't prepared to deal with this and
if anybody had, you know, used Asperger's syndrome or autism as a word to
describe me way back then in the early '70s when I'm, you know, Will's age,
then, you know, suddenly that would be a horrific future for me just because
of the times we lived in. What my son is going through right now is vastly
different. He's accepted for those behavioral differences. People know
what's going on with him.

GROSS: Do you think that there are certain things that parents typically want
from their children or--like emotions they want their children to give back
that children with Asperger's syndrome are unable or less likely to do?

Mr. CARLEY: Yes. The best example comes from Tony Attwood's book where
there was a mother who was--finally had to break down crying to her
eight-year-old child, `Why do you never ever tell me that you love me? Why?'
and the child just looked at her, perplexed, and said, `Mom, I told you that
when I was six.'

GROSS: Mm-hmm. So if we've established the fact, there's no point to
reiterate it.

Mr. CARLEY: No, exactly. Well, the child with Asperger's syndrome is like,
`Well, but I already told you that. Why do you need to hear it again?'

GROSS: Right.

Mr. CARLEY: The whole notion of the need for affirmative reinforcement is
something that is not instinctive to us. We don't understand it. We can
learn it very easily, but at that age, I can purely, you know, see that
child's point of view.

GROSS: Well, Michael John Carley, I want to thank you very much for talking
with us.

Mr. CARLEY: Terry, thank you. It has been my pleasure.

GROSS: Michael John Carley is the executive director of GRASP, an education
and support group for people with Asperger's syndrome.

(Credits)

GROSS: I'm Terry Gross.
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