I posted this to my old blog on 9/14/05:
Aloha,
I wrote this a year ago to a friend, trying to explain a bit of what happens for me.
Regards,
Les
Aloha XXXX,
I wanted to thank you (and YYY, ZZZ, and WWW) for your friendship and help. My relationships have almost always been started by surprise, accident, or where the girl took the initiative.
I've found two main patterns in my social interaction with new women, 1) where I'm completely oblivious to any possibilities, and not until after the situation is over to I see any possibilities; or 2) where my desire is so great yet my resistance to asking for something becomes matched to the desire. No matter how much I want something, I can't get the words out.
I recently had an occasion at one of your shows where I had been talking with someone off and on for two months and finally to overcome my objections, and she came over and wanted to go clubbing with me, and I couldn't get the words out "yes, let's go". It's terribly frustrating, not to mention somewhat debilitating for a day or so afterwards.
It's amazing how friendliness quickly turns to anger and revulsion when one doesn't play the right next card in the social game. I've watched it so often that I often try to not let it get started and don't quite understand when it does in some situations.
After dancing with YYY (a tribe member & Friend) and the group at the festival, I was just leaving, and gone over to the far fence to watch the two Willies (Nelson/K) play for a bit. And GGG (another tribe member who didn't reply to my friend request) comes up and stares at me, and for the first time that I can recall, I respond (probably all the chi from dancing all day in the rain).
There are also many times that I just misunderstand gestures or why someone is friendly leading to confusing.
While much of me has "given up", I still try to place myself in situations that are uncomfortable for me to see if I can't just break through. But that will probably require more chi, I know how to do it, I just should. The only drawback to that is that it also makes the craving and desire so much larger and so much more painful.
I do appreciate all of your friendship.
Mahalo,
Les
P.S. I found this article today that seems to talk a bit about my experiences.
Answer, but No Cure, for a Social Disorder That Isolates Many April 29, 2004
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 compensate.
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
appreciated."
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 greater strain.
"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 Social Gaffes
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 vary.
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. "It festers."
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 thoroughness.
Inspiration: Trying to Learn Hidden Curriculum
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 history of 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 responses.
When John Hatton, 40, of Boston, began to tell friends about his
Asperger's diagnosis, they were skeptical.
"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 Others
For troubled marriages, the diagnosis can be pivotal.
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 terrible."
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 so horrible.
"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 awkward questions."
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 Aspies.
"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 participant.
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 The New York Times Company
