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

 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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AMY HARMON:

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