Fw: Answer, But No Cure, for a Social Disorder That Isolates Many

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-- Answer, But No Cure, for a Social Disorder That Isolates Many

ABOARD believes that family support groups are crucial towards maximizing

the potential of those with autism, and currently financially supports 58

support and or ASD social groups in most Pennsylvania counties.

The demand for personal assistance in navigating the service and education

maze illustrates why ABOARD responds annually to over 4000 requests for

information and guidance. And always without charge.

ABOARD exists to both increase autism awareness and knowledge. Between its

workshops conferences and the various speaking opportunties presented ABOARD

educates over 2200 each year

Answer, but No Cure, for a Social Disorder That Isolates Many

[by Amy Harmon for the New York Times.] http://www.nytimes

com/2004/04/29/national/29SYND.html?ex=1084213804 & ei=1 & en =399a62f47825209a

Last July, , 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. 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. , 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. - 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. 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. , 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. , 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 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 nsen, 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. nsen, who realized that he had

Asperger's after his son's diagnosis of autism. Mr. nsen's boss at the

time, Ed , had never heard of Asperger's. But he assigned a team member

to form strategies with Mr. nsen. 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. nsen said. It

may have helped, too, that he is what Mr. 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. said, Mr. nsen was

clearly undiplomatic. " But he was right. " Not everyone is finding such

enlightened responses. When 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

nsen, the diagnosis helped smooth out the rough edges. Ms.

nsen, 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 ,' " 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. nsen

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. nsen 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. nsen 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 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. J. Carly, the

group's leader, suggested: " How about, `Hi, I'm . 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 at age

12, 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. learned how to rid 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), , 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, " 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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