Re: Asperger's Syndrome: Answer, but No Cure, for a Social Disorder That Isolates Many

[Guest guest]

: I have many of the same problems, and was told by a psychic that I

am such a spiritually evolved being that I am overly sensitive to all these

" gross " vibrations. No wonder that guy charged so much for such flattery; it's

clear I'm just an ordinary aspergerian like you and a lot of other highly

sensitive people !!:~) Although I certainly consider you a highly evolved

spioritual being also. Maybe we need a new diagnostic category!

I have found that cutting out sugar and ALL booze helps me get through

these marathons (I learned that the hard way). Jaquelyn

Asperger's Syndrome: Answer, but No Cure, for a

Social Disorder That Isolates Many

I find that even at DAN! autism conferences, many of the DAN physicians

aren't very attuned to what Asperger's is, that a HFAspie can become

exhausted while attempting to sustain an outward appearance of normalcy,

of cooperation with the group's process. I'm still overly exhausted from

the DAN! process that has become a marathon: flight day, think-tank day,

3 days of conference, physician's training session, then a patients day,

then a flight day, then days to regroup from the neurological and

spiritual shattering that is the aftereffect . Each of the

conference-related days is extremely hypersocial, hyperstimulatory, and

exhausting. In contrast, I live alone, am content not to interact with

people for most of the day (except via internet; seeing the words on

screen is far more meaningful for me and far less neurologically toxic

than wallowing in social cues I miss, than wallowing in sensory

hyperstim (eg, background music, too much chatter, too many people). For

me, these overloads are exhausting (whether at conferences or in my home

town) and, if prolonged, cause " mild " deterioriations in health that

last for days, even a week or more after the conference. I've begun to

protect myself by not participating in too many conferences, and now

that the DAN process has (for me) become such a marathon of

hyperstimulation and exhaustion, my mind is groping towards a way to yet

another adaptation. Oh well, at least today's NYTimes article is a

breath of fresh air. Here's a quote, plus the whole article:

" Pretending to be normal, even for a few hours, is mentally exhausting,

many Aspies say. "

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

By AMY HARMON

http://www.nytimes.com/2004/04/29/national/29SYND.html

ast 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. "

Miriam Sushman for The New York Times

" In a way it has changed everything, even though nothing has changed, "

says , of discovering he has an autistic disorder.

Tim Shaffer for The New York Times

Gresham O'Malley, left, and Britchkow in an exercise in which

they try to converse without lapsing into silence, as Cohen observes.

Annie Marie Musselman for The New York Times

After nsen was found to have an autistic disorder, it helped

smooth out the rough edges of his relationship with his wife, Janet.

*

The material in this post is distributed without profit to those

who have expressed a prior interest in receiving the included

information for research and educational purposes.

For more information go to:

http://www4.law.cornell.edu/uscode/17/107.html

<http://oregon.uoregon.edu/%7Ecsundt/documents.htm>

http://oregon.uoregon.edu/~csundt/documents.htm

<http://oregon.uoregon.edu/%7Ecsundt/documents.htm>

If you wish to use copyrighted material from this email for

purposes that go beyond 'fair use', you must obtain permission

from the copyright owner.

[Guest guest]

- I just want to let you know how much I appreciate it when you post your

personal experiences. While my metal-toxic son has never been 'officially'

diagnosed, he is clearly more Aspie than autistic because of his language

skills. Your posts help me understand him better.

Thanks,

FWIW, it took me a good week to pull my brain back together after DAN and I'm

quite sure I left a good chuck of it on the carpet there!

[Guest guest]

,

Although I am not on spectrum this is how I feel from too much noise,

people, etc. A function can completely wear me out. I never turn on

the tv or radio and prefer solitude and quiet. What I have never

understood though is that my recovering teen has always craved noise,

comotion, crowds, the more the better. Take it easy, regroup and

know how much you are appreciated for all you do.

Michele

> I find that even at DAN! autism conferences, many of the DAN

physicians

> aren't very attuned to what Asperger's is, that a HFAspie can

become

> exhausted while attempting to sustain an outward appearance of

normalcy,

> of cooperation with the group's process. I'm still overly exhausted

from

> the DAN! process that has become a marathon: flight day, think-tank

day,

> 3 days of conference, physician's training session, then a patients

day,

> then a flight day, then days to regroup from the neurological and

> spiritual shattering that is the aftereffect . Each of the

> conference-related days is extremely hypersocial, hyperstimulatory,

and

> exhausting. In contrast, I live alone, am content not to interact

with

> people for most of the day (except via internet; seeing the words

on

> screen is far more meaningful for me and far less neurologically

toxic

> than wallowing in social cues I miss, than wallowing in sensory

> hyperstim (eg, background music, too much chatter, too many

people). For

> me, these overloads are exhausting (whether at conferences or in my

home

> town) and, if prolonged, cause " mild " deterioriations in health

that

> last for days, even a week or more after the conference. I've begun

to

> protect myself by not participating in too many conferences, and

now

> that the DAN process has (for me) become such a marathon of

> hyperstimulation and exhaustion, my mind is groping towards a way

to yet

> another adaptation. Oh well, at least today's NYTimes article is a

> breath of fresh air. Here's a quote, plus the whole article:

>

> " Pretending to be normal, even for a few hours, is mentally

exhausting,

> many Aspies say. "

>

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

> By AMY HARMON

> http://www.nytimes.com/2004/04/29/national/29SYND.html

>

> ast 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. "

>

>

> Miriam Sushman for The New York Times

> " In a way it has changed everything, even though nothing has

changed, "

> says , of discovering he has an autistic disorder.

>

>

> Tim Shaffer for The New York Times

> Gresham O'Malley, left, and Britchkow in an exercise in

which

> they try to converse without lapsing into silence, as Cohen

observes.

>

> Annie Marie Musselman for The New York Times

> After nsen was found to have an autistic disorder, it

helped

> smooth out the rough edges of his relationship with his wife, Janet.

>

>

> *

> The material in this post is distributed without profit to those

> who have expressed a prior interest in receiving the included

> information for research and educational purposes.

> For more information go to:

> http://www4.law.cornell.edu/uscode/17/107.html

> <http://oregon.uoregon.edu/%7Ecsundt/documents.htm>

> http://oregon.uoregon.edu/~csundt/documents.htm

> <http://oregon.uoregon.edu/%7Ecsundt/documents.htm>

> If you wish to use copyrighted material from this email for

> purposes that go beyond 'fair use', you must obtain permission

> from the copyright owner.

>

>

>

>

[Guest guest]

Aside from occasional deserts and ultra-dark chocoloate, the sugar and

booze and I parted ways years ago. A recent conference adaptation for me

was to deliberately miss some of the presentations. At the recent DAN! I

didn't do that because the various findings were/are so important

(although I could have learned them by perusing the syllabus at far less

personal toll). Another adaptation is to avoid marathon dinners in the

evening, but even then, an early bowl of soup in the hotel's cafe

necessarily prolongs sociality and hyperstim. Perhaps there's a range

from Asperger's to kinda-sorta Asperger's to having some traits that are

consistent with the DSM-IV definition, and looking at a person's overall

lifestyle may be more instructive than judging by feigned sociality at a

conference...

Jaquelyn McCandless wrote:

> : I have many of the same problems, and was told by a psychic that I

am such a spiritually evolved being that I am overly sensitive to all these

" gross " vibrations. No wonder that guy charged so much for such flattery; it's

clear I'm just an ordinary aspergerian like you and a lot of other highly

sensitive people !!:~) Although I certainly consider you a highly evolved

spioritual being also. Maybe we need a new diagnostic category!

> I have found that cutting out sugar and ALL booze helps me get through

these marathons (I learned that the hard way). Jaquelyn

> ----- Original Message -----

>

>

>

[Guest guest]

> Unlike people with classic autism, which is often accompanied

> by mental retardation,

Is this accurate? Have you seen stats showing the percentage of autistic

kids that are thought to be mentally retarded? I always wonder how anyone

could accurately measure the IQ of people who may not be motivated to fully

participate in testing.

Lynne

[Guest guest]

I've seen the figure of 70% tossed about regularly. It's a self-

fulfilling prophecy: Believe that people with ASD have MR, then use

IQ tests normed for kids w/o communication disorders, then *presto*

you get an MR level score.

> > Unlike people with classic autism, which is often accompanied

> > by mental retardation,

>

> Is this accurate? Have you seen stats showing the percentage of

autistic

> kids that are thought to be mentally retarded? I always wonder how

anyone

> could accurately measure the IQ of people who may not be motivated

to fully

> participate in testing.

>

> Lynne

[Guest guest]

> I've seen the figure of 70% tossed about regularly. It's a self-

> fulfilling prophecy: Believe that people with ASD have MR, then

use

> IQ tests normed for kids w/o communication disorders, then *presto*

> you get an MR level score.

>

Yes, or in the case we have been stuck where the testing used

indicates the child is average and therefore in no need of services,

although there are many indications of a very high IQ and lower

performance but the district doesn't want to do any NV IQ testing so

we have received very little in the way of services.

Michele

[Guest guest]

The association between autism and mental retardation has long been

known, and many researchers appreciate the dilemma posed by Lynne.

The search

autis*[ti] AND (retardation[ti] OR retarded[ti])

today generated 185 citations, for those who want to explore Pubmed's

offerings.

The same search but w/o the [ti] restrictions generated 1700+ citations.

In Pubmed, [ti] restricts to word-in-article-title.

Lynne Arnold wrote:

>>Unlike people with classic autism, which is often accompanied

>>by mental retardation,

>>

>>

>

>Is this accurate? Have you seen stats showing the percentage of autistic

>kids that are thought to be mentally retarded? I always wonder how anyone

>could accurately measure the IQ of people who may not be motivated to fully

>participate in testing.

>

>Lynne

>

>

>

>