[Heartlogic-dev] Fw: NYTimes.com Article: Answer, but No Cure, for a Social Disorder That Isolates Many

[Joshua N Pritikin]

----- Forwarded message from Enid Pritikin <address@hidden> -----

Date: Thu, 29 Apr 2004 14:38:14 -0700
To: address@hidden
From: Enid Pritikin <address@hidden>

this was on the front page of the NYTimes this morning!

>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."

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