keskiviikko 21. marraskuuta 2012

Autism Diagnosis

 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

 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?' ''

 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

 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

 ''No,'' Ms. Dziobek replied. ''I like the way the green goes with your

 ''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. ''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.

 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

 ''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.''

 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

 ''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.''

FINDING OUT: Adults and Autism; An Answer, but Not a Cure, for a Social Disorder
NY Times 29.4.2004

Lähetä kommentti