Answer, but No Cure, for a Social Disorder That Isolates
By AMY HARMON
Last July, Steven Miller, a university
librarian, came across an article about a set of
neurological conditions he had never heard of called
autistic spectrum disorders. By the time he finished
reading, his face was wet with tears.
"This is me," Mr. Miller remembers
thinking in the minutes and months of eager research that
followed. "To read about it and feel that I'm not the only
one, that maybe it's O.K., maybe it's just a human
difference, was extremely emotional. In a way it has changed
everything, even though nothing has changed."
Mr. Miller, 49, who excels at his job but
finds the art of small talk impossible to master, has since
been given a diagnosis of Asperger's syndrome, an autistic
disorder notable for the often vast discrepancy between the
intellectual and social abilities of those who have it.
Because Asperger's was not widely
identified until recently, thousands of adults like Mr.
Miller — people who have never fit in socially — are only
now stumbling across a neurological explanation for their
lifelong struggles with ordinary human contact.
As Mr. Miller learned from the article,
autism is now believed to encompass a wide spectrum of
impairment and intelligence, from the classically
unreachable child to people with Asperger's and a similar
condition called high-functioning autism, who have normal
intelligence and often superior skills in a given area. But
they all share a defining trait: They are what autism
researchers call "mind blind." Lacking the ability to read
cues like body language to intuit what other people are
thinking, they have profound difficulty navigating basic
social interactions. The diagnosis is reordering their
lives. Some have become newly determined to learn how to
They are filling up scarce classes that
teach skills like how close to stand next to someone at a
party, or how to tell when people are angry even when they
are smiling. Others, like Mr. Miller, have decided to
disclose their diagnosis, hoping to deflect the
often-hostile responses their odd manners and miscues
provoke. In some cases, it has helped. In others, it seemed
only to elicit one more rejection.
This new wave of discovery among Aspies,
as many call themselves, is also sending ripples through the
lives of their families, soothing tension among some married
couples, prompting others to call it quits. Parents who saw
their adult children as lost causes or black sheep are
fumbling for ways to help them, suddenly realizing that they
are disabled, not stubborn or lazy.
For both Aspies and their families, relief
that their difficulties are not a result of bad parenting or
a fundamental character flaw is often coupled with acute
disappointment at the news that there is no cure for the
disorder and no drug to treat it.
"We are with Asperger's where we were 20
years ago with mental illness," said Lynda Geller, director
of community services at the Cody Center for Autism in Stony
Brook, N.Y. "It is thought to be your fault, you should just
shape up, work harder, be nicer. The fact that your brain
actually works differently so you can't is not universally
Some Aspies interviewed asked to remain
anonymous for fear of being stigmatized. But with the
knowledge that their dysfunction is rooted in biology, many
say remaining silent to pass as normal has become an even
"I would like nothing better than to shout
it out to everyone," a pastor in California whose Asperger's
was just diagnosed wrote in an e-mail message. "But there is
so much explanation and education that needs to happen that
I risk being judged incompetent."
Some are finding solace in support groups
where they are meeting others like themselves for the first
time. And a growing number are beginning to celebrate their
own unique way of seeing the world. They question the
superiority of people they call "neurotypicals" or "N.T.'s"and
challenge them to adopt a more enlightened, gentle outlook
toward social eccentricities.
Asks the tag line of one online Asperger
support group: "Is ANYONE really `normal?' "
Discovery: Finding Reason for
In recent years, a growing awareness about
autism has led to a sharp increase in children receiving
special services for their autism disorders. But for many
adults who came before them, the process of discovering the
condition has been haphazard.
Mr. Miller, a senior academic librarian at
the University of Wisconsin, Milwaukee, had searched for
years for an explanation for what he saw as a personal
failing, at one point buying stacks of self-help books. Many
others sink into depression, their conditions misdiagnosed,
or struggle without any help.
Now, autism centers intended for children
are being flooded with adults who suspect they have
Asperger's. Since the condition runs in families,
psychologists treating autistic children are often the ones
diagnosing it in parents or relatives.
Often the new diagnoses involve people who
for years have been deemed rude, clueless or just plain
weird because of their blunt comments or all-too-personal
disclosures. They typically have a penchant for accuracy and
a hard-wired dislike for the disruption of routine.
Unusually sensitive to light, touch and
noise, some shrink from handshakes and hugs. Humor, which so
often depends on tone of voice and familiarity with social
customs, can be hard for them to comprehend. Although many
have talents like memory for detail and an ability to focus
intently for long periods, Aspies often end up underemployed
and lonely. Unlike more severely impaired autistics, they
often crave social intimacy, and they are acutely aware of
their inability to get it.
Those with the condition often develop a
passion for a narrow field that drives them to excel in it,
but fail to realize when they are driving others crazy by
talking about it. And they are reflexively honest, a trait
that can be refreshing — or not.
On a recent afternoon at the Center for
Brain Health at New York University, Louise Kavaldo, 57, who
received a diagnosis of Asperger's last month, prepared to
take some cognitive tests.
"Do you think my shirt is too tight?" she
asked Isabel Dziobek, the researcher.
"No," Ms. Dziobek replied. "I like the way
the green goes with your hat."
"Well I think your shirt is too tight,"
replied Ms. Kavaldo, who has a B.A. in sociology and works
in early childhood education. "I think it's unprofessional."
Researchers say autism spectrum disorders
are a result of a combination of perhaps 10 to 20 genes,
plus environmental factors, that seem to cause the brain to
exhibit less activity in its social and emotional centers.
Unlike people with classic autism, which is often
accompanied by mental retardation, those with Asperger's
have normal language development and intelligence. First
identified in 1946 by the Viennese physician Hans Asperger,
the condition was little-known until it was added to the
American psychiatric diagnostic manual in 1994. Only in the
last few years have mental health professionals become
widely aware of it.
The degree to which someone is affected
may correlate with how many of the autism genes he or she
has, some researchers say. About one in 165 people are
thought to be on the autistic spectrum, although estimates
The recent spike in diagnoses of autism in
people who are generally able to function in society has
prompted some to suggest that it is an excuse for bad
behavior or the latest clinical fad. But psychologists and
researchers say they are simply better able to recognize the
condition now. While many people may have a few of the
traits and just one or two of the genes, to qualify for an
Asperger's diagnosis they typically must have developed
obsessive interests and social difficulties at an early age
that now significantly impair their ability to function.
Carl Pietruszka, 52, said that being found
to have Asperger's had been a blow to a long-held fantasy.
"It's been my hope for years and years that if I keep
working at it, I'll find a strategy that will fix things,
that if I practice enough, it'll be O.K.," Mr. Pietruszka
said. "Now I know I'm working with Asperger's, which is
going to be an ongoing thing. It'll get better, but it's not
going to be O.K. That has me seriously bummed out."
Mr. Pietruszka, who was laid off from four
engineering jobs over a decade, said colleagues had often
ribbed him for being too serious and "not getting it."
"It doesn't make you feel good," he said.
Instead of looking for work with a company
where he would have to navigate office politics again, he
has set up his own business as a home inspector in
Harleysville, Pa., where clients have complimented his
Inspiration: Trying to Learn
Pretending to be normal, even for a few
hours, is mentally exhausting, many Aspies say. But for
some, the diagnosis is an inspiration to master what autism
experts call the hidden curriculum: social rules everyone
knows but could never say how they learned.
A class taught by Mary Cohen, a
psychologist at the University of Pennsylvania's new clinic
for adult social learning disorders, is crowded with people
whose conditions are newly diagnosed. The subject at a
recent session was basic conversation. As the class watched
from behind a two-way mirror, pairs of students tried
talking to each other without lapsing into silence.
Then came the review: had it been a
dialogue, or had someone gone on too long about the early
Russia? Did they lean in? Eye contact, Dr.
Cohen cautioned, should be regular but not "like you're
boring a hole through them." Moving the eyebrows can help.
Gresham O'Malley, 33, a computer support
technician, said he hoped the class might make it easier for
him to find a girlfriend.
But classes like Dr. Cohen's are few and
far between. Mostly, parents, siblings and spouses are left
to explain such everyday social rules as which urinal to
select (preferably not the one next to another that is
occupied) and why a prospective employer does not have to be
told about a punctuality problem.
At a support group for parents in Dix
Hills, N.Y., the two-hour meeting runs late as more than two
dozen participants trade notes about adult children who
always had trouble making friends but now face more serious
problems. After flubbing dozens of job interviews, many
spend their days playing video games.
"Don't you get the advice, `Give him a
kick in the pants?' " one father asks.
"Exactly," answers a mother. " `You're
spoiling him.' "
"Our relatives will say, `He looks fine to
me,' " adds another parent. "And he does look fine. That's
not the point."
Some of the anger is directed at mental
health professionals who as recently as two years ago failed
to identify Asperger's when they saw it. But some parents
also complain about the lack of tolerance for "weird" kids,
and the weird adults they grow up to be.
"If my daughter was in a wheelchair,
people would be opening doors for her," said Larry Berman, a
salesman who attends a similar group in Philadelphia.
"Wouldn't it make a quantum difference if instead of it all
being on our kids to flex to meet the rest of the world, the
rest of the world would meet them halfway?"
Aware that their missteps seem all the
more shocking because they show no visible signs of
disability, some are choosing to disclose their Asperger
diagnosis in hopes of heading off social mishaps — or
because they are in the middle of one.
When Eric Jorgensen, a programmer at
Microsoft, confronted his boss's boss in a group meeting,
his colleagues told him later that they were cringing, and
he received a reprimand from his supervisor.
"I talked to my boss and said, `This is an
example where I need help,' " said Mr. Jorgensen, who
realized that he had Asperger's after his son's diagnosis of
autism. Mr. Jorgensen's boss at the time, Ed Keith, had
never heard of Asperger's. But he assigned a team member to
form strategies with Mr. Jorgensen. In public meetings, they
agreed, someone would throw a pen at him when he was going
too far. Privately, they would tell him directly, rather
than hint at it in ways he might not understand.
"They cared about me and I sensed that,"
Mr. Jorgensen said. It may have helped, too, that he is what
Mr. Keith describes as "one of the best guys that I've ever
worked with" at finding defects in the design of software.
In the argument with their boss, Mr. Keith said, Mr.
Jorgensen was clearly undiplomatic. "But he was right."
Not everyone is finding such enlightened
When John Hatton, 40, of Boston, began to
tell friends about his Asperger's diagnosis, they were
"Almost everyone I contacted about this
were either sort of perplexed or — I don't want to say
hostile," said Mr. Hatton, who said he had been fired from
more than 26 jobs over the last two decades and now received
federal disability assistance. "They thought I had found an
excuse or something."
Results: Saving Marriages, Ending
For troubled marriages, the diagnosis can
One Los Angeles woman remembers the
precise angle of the sun coming through the library window
when she first read about Asperger's. She had wanted to
leave her marriage for years but blamed herself for failing
to make it work. When her husband refused to discuss whether
his condition contributed to their problems, she said, she
was able to leave without guilt.
But for Janet and Eric Jorgensen, the
diagnosis helped smooth out the rough edges. Ms. Jorgensen,
attending a conference to learn more about
her autistic son, said it was like "a light coming on" when
she heard that adult family members were often given
diagnoses only after a child had been identified as being on
the autism spectrum.
"It just sort of hit me, `That explains
Eric,' " she said.
He still says things that are callous, at
least on the surface.
"She'll say something about how terrible
her clothes look," Mr. Jorgensen explains. "I'll say, `Yes,
honey, those are terrible-looking clothes,' when really
she's wanting some affirmation that her clothes don't look
At those moments, Ms. Jorgensen now tells
her husband that he is acting like an "ass burger," a
running joke that defuses anger on both sides. But such
exchanges have mostly disappeared because Ms. Jorgensen
knows that she is unlikely to get what she wants that way.
Learning to be more direct herself was not
"I would just go change the clothes," she
said. "If I want affirmation I need to say, `I'm feeling a
little insecure, can you give me reassurance?' "
United by their newfound identity,
Asperger adults, so used to being outcasts, are finding
themselves part of an unlikely community. Through online and
in-person support groups, many are for the first time
sharing the pains and occasional pleasures of feeling, as
one puts it, "like extraterrestrials stranded on earth."
Emboldened by the strength of their
numbers, they are also increasingly defying, or at least
exploring, how to bend the social rules to which they have
tried so hard to adapt.
Some brag about their high scores on the
"autism quotient" test, developed by Cambridge University as
a measure of autism in adults. "What's your `Rain Man'
talent?" asked a recent subject line on an Aspie e-mail
discussion list, referring to the movie starring Dustin
Hoffman as an autistic savant. Answers included perfect
memory for phone numbers and "annoying people by asking
At a recent meeting of the Manhattan adult
support group, a woman explained that she "just wanted to
see if I fit in the group."
A longtime member replied, "None of us fit
in with the group."
Neurotypical friends had been invited to
serve as "expert" panelists to field questions on the
evening's topic: flirting. But the best advice came from the
"I find that sometimes shutting up and
just not talking often makes them think you're a good
listener when in fact you're just not talking," said one
Michael J. Carly, the group's leader,
suggested: "How about, `Hi, I'm Michael. I really stink at
flirting but would you like to go for a walk to the library
or something?' "
The next generation of Asperger's adults
may already be benefiting from an earlier diagnosis. After
the condition was diagnosed in her son Jared at age 12,
Nancy Johnson of Edmonds, Wash., was able to persuade his
public school to provide a full-time aide who coached him on
social skills for the next four years. Ms. Johnson learned
how to rid Jared of some of his behavioral quirks, like his
tendency to walk over to other tables in restaurants to get
a better look at the food.
Ignoring his mother's concerns about his
special interest ("I wouldn't have picked lizards," she
says), Jared, now 19, has his path to becoming a renowned
herpetologist all mapped out. After a rough time in middle
school, where he says he finally learned the social
consequences of picking his nose in public, he describes
himself as "practically popular."
"It does seem like people with Asperger's,
once they click, have a lot of advantages in life," Jared
said. "It's like we stay tadpoles for longer, but once we're
ready, we're no less of a frog."
Copyright © 2004 by The New York Times Co.
Reprinted with permission.