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

NY Times ^ | April 29, 2004 | AMY HARMON

[neverdem]

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."

[RSmithOpt]

You are completely on the nose. When all the adult emotions wake up in us as teens and we begin to grow, it's tough for all kids without anything like AS. It's a tenfold problem for those who have it. Hopefully, as time goes on, his confidence within/about himself will grow strong. I also believe the socialist doctrine trying to be beat into our kids while in school and the liberal media, makes this type of affliction much worse. I am amazed at how much teens are bombarded with advertising to "be cool and 'in' like ever body else". That's the wrong message being sent to all kids IMHO. Hang in there.

[tiamat]

Same here, FRiend.

Hang in there!

[tiamat]

Your step-daughter is lucky to have you!

A lot of autistic, Aspberger's kids are musical. Caitlin has a nice singing voice, and can memoris lyrics in a snap, but has no real interest in persuing it!



You go right ahead and talk about yourself as much as you like!

You are amongst friends!

[sarasota]

If you really want to know, seek out a psych who specializes in autistic disorders. When my daughter went in for the diagnosis, the doctor gave her a simple questionnaire and within 15 minutes she had a diagnosis. It's really obvious to a good specialist. There's lots of information online if you want to look further.

[SamAdams76]

I also have this as well as a mild case of Tourette's syndrome. I've never discussed it here before because I don't want to appear to be making a "victim" of myself. But it isn't easy. I still try to avoid social events as much as possible because I always freeze up at them and never know what to say. When I try to be witty, it never comes off well. So I retreat off to a corner by myself. But I have improved at "small talk" and I am much less socially awkward than I used to be. But I'll never be the "glad-handing back-slapping" type so I just don't try to be.

I actually do much better in more intimate social settings (with less people) - especially with people that I know and are comfortable with. But with strangers, I almost never make a good first impression. This has hurt my career too. But so it goes.

As for the Tourette's, I was made fun of unmercifully in school because of my twitching. Fortunately I never had the more extreme case that involves involuntary swearing (but the urge is there). In fact, I make it a point to never even swear on purpose, it helps keep it under control.

Anyway, I don't want to dwell on it. It did make me a much stronger person and while childhood was a torture, I've had a terrific adult life so I got no major complaints and a lot to be thankful for.

[tiamat]

Travis, you are right.

And Fitz, my daughter DOES cry... she dsperately wants to fit in... and just can't ...

Just because they are mis-wired doesn't mean that they do not, or cannot have feelings or empathize.


Caitlin is one of the most tender-hearted girls you would ever meet. She is SO good with animals... almost psychic that way.

She just ha a really hard time reading people, and so she does and says innappropriate things.

[RSmithOpt]

Now divorced at 47, I made a choice not to turn my back on my brother (48) who maybe had/has AS with an IQ around 90. It cost me my marriage/relationship for 19 yrs. While growing up, my brother, could remember EVERY LYRIC to all the Beatles songs from 1963-1968, sing them, tell me who wrote it, what album it was on and what year it came out. He could also watch a cartoon, then draw scenes from it repeating ALL the dialog. He was put in special ed classes from second grade up and managed to get his GED. He served 11 years in the Army, has only had one girlfriend ever and has never married. He drives an 18 wheeler now, is HAZMAT II certified making $60K a year.

Anyway, he knows trucking and NASCAR. Hand him a 1040EZ to fill out, solve a simple geoemtry problem, or have him write an essay and he is completely lost.

Anyway, in a 16 month period starting 6/2001, Randy came to stay for awhile with me and the ex....I could tell something wasn't right with him though he was driving local and roommate with a single friend; Dad had 2 major surgeries, 8/03/01 then 01/19/02; brother had surgery 9/08/01, Mom (step mom actually)had surgery on 9/11/01, wife left on 11/02/01 to have an affair with an ex-friend / neighbor of 6yrs. whose wife I buried and was a pallbearer for 8/25/2000; 11 yr old lab I raised from 6 weeks old, Luke, died Christmas night 12/25/01; the company I worked for layed off 40% its workforce 04/2002; Dad died 9/18/2002.

I was told by the ex that my brother is nothing but a pain in the rear, I didn't have any energy or time for her or our friends, didn't care about her feelings the summer of 2001 while working for 8 weeks straight with no days off 65-70 (big project)hours with 1/2 day off for Dad's first surgery. I told the ex that RAndy had no place to go or anyone else to help with his recovery since Mom was occupied with Dad's recovery.

So, after that, my brother is now my permanent roommate I see every 3 weeks. All I can say is, so guess who was there for me when I needed someone? Randy was. He was there and has been for me to share my pain (listen) through the separation and divorce because he did not go back to driving until 06/2002. Randy and I were adopted in Germany 56 and 57 from different single mothers. He and I never knew our biological parents. If not for the strengths given to me and my brother by my (adopted)Dad and step mom, guess I could have folded on my own emotions.

So, 'T' sometimes we all have inner strengths we're not even aware of and of those around us. Life will just test us from time to time. It's amazing what we can learn about ourselves and life from those "quirky" people we love so much. And sometimes, those that seem so "normal" can really fool you.

[tiamat]

That is SUCH a great story! Thank you for sharing it!

Your ex sounds like a real witch. I know it hurt at the time, but no loss to you not having her in your life now!

Your brother sounds terrific. Really hard worker and a good guy to have around.

I agree about the "normal" people, BTW!

I cherish and love my daughter, and would not have her any other way.

Thanks,

Tia

[Yaelle]

It's one of the more unpleasant things one can have..

No way! There are plenty worse things. My son is an Aspie. He has gifts and he has some difficulties. But I wouldn't trade him for anything. On the brain disorders side (to leave out cancer and all the other debilitating things), schizophrenia and bipolar are WAYYY worse.

[Eva]

My daughter recieved training in social skills from Orange County mental health people as part of her special education service, although she was never diagnosed as Aspergers. They just said that she had many of the same symptoms as an autistic child. They just handled each one of her disabilities separately because they couldn't figure out what was wrong with her. They just said that she was the most heavily effected (with learning disabilities) child that they had ever seen. She had a language deficit, dyslexia, dyscalclia, her eyes don't track together and something about her joints that I forget what it's called. Anyway the social skills training finally kicked in, she can now read better than a lot of other high school graduates and she works around the dyscalclia to some extent by using a calculator. I don't know if she is really Aspbergers, but I am sure my brother is and maybe I am too, a little.

[Yaelle]

Your son reminded me of mine. He doesn't want to be a computer programmer; he wants to be better and more successful than Bill Gates! LOL.

[annyokie]

You gotta love 'em! The thing I fear is that since he most likely won't be King the World, he'll settle for playing video games when he's 30.

No, I'm kidding. I think Bob has a great future ahead of him if we can keep him focused on the end game and not the process.

[Yaelle]

I couldn't bear it when my son was left out or picked on. I thought it did not help his life at all to be in that situation. I won't set him up for misery in his teens. So he is homeschooled. It made all the difference in the world. He can be himself and hopefully be happy about it.

[FITZ]

I was mostly referring to articles like this ---- I didn't hear Rush's show but I can see why he might have made fun of this. I wasn't referring to serious problem with communicating with people but rather labeling normal people as some kind of mental disorder when they're really one kind of normal. My kid is asocial --- he can communicate but he doesn't really relate to his peer group and doesn't choose to except as necessary but is happy without social interaction with them. Since he wanders around in his own little world and at age 14 has never made a phone call to anyone, never invited anyone over he could be mistakenly labeled.

I guess to me it's when people start saying they're successful but have this serious mental disorder --- because if you can't relate to society at least as needed then I don't see how you can succeed.

[Yaelle]

Travis, your son did not ever naturally mature out of the worst of the emotional highs and lows? My son's 1st 7 years were PURE HECK, if I may, but he is much evener now emotionally. Well, he WAS, from age 7 to 12. Now that he is 12 and hitting puberty, there are some real teary moments here and there, but not the horrible outbursts that you mention. I at one time wondered if he had bipolar, but now I know he does not. I am sorry you guys are going through all that. I hope it gets better.

[Yaelle]

How can a mild form really be a diagnosis? ...Just not being popular isn't an illness.

Believe me, you eventually figure out that your child is not like all the other children in quite varying ways, and when you hear of thousands of other kids who have those exact same differences, well, that makes for a diagnosis. Asperger's is definitely a syndrome. It has so much in common with autsim but with some drastic differences.

My son began picking out letters by his first birthday and was reading by 2.5. Reading ANYTHING, even the newspaper. He cracked the code in his head and read everything perfectly. You could read him a word like "tough" or "exponential" and that was it, he knew it for life. He understood even the most complex things very early.

He had two early obsessions. Before age 2 he was obsessed with what floor people lived on. He was obsessed with elevator buttons and floors. (We lived on the 6th floor of a high rise at the time.) By age 2, he had turned to cars. We could walk through a parking lot with him in his stroller and he would call out every single car's name and model. "Blue Foahd Tauwus" "white mewcedes benz" "gween jaguar" whatever. This may have been caused and assisted by the number of parking lots we were forced to spend hours in waiting for everyone else to finish their religious service or restaurant from which he was always hastily removed. We were thrown out of some of the nicest places. I shudder to recall my embarrassment.

And we were told by all sorts of "friends" and family members that "All he needs is a good swift kick in the pants." Finally I snapped, and hissed at one uncle "I could beat him until he was barely conscious and it would not make him change!" And indeed it would not have.

I only wish I would have known my son's diagnosis earlier. His talking at 9 months and being as verbal as a litigation attorney since then made it hard to fit autism to him. I only had him diagnosed at age 9. Sigh.

[FITZ]

Yes it is, when you are neurologically incapable of ever mastering normal social discourse, and your mistakes lead to scorn, humiliation and rejection.

That does sound like something different to me ---- that kind of problem --- a neurological incapability to accomplish social discourse would be serious and interfere with success. That I wouldn't argue with because that sounds like the classic definition of autism.

[FITZ]

My kid is definitely obsessed with science and electronics and I guess most people would call a lack of and disinterest in friends, parties, etc "abnormal", and the social disinterest often goes as far as not caring about grades --- it interferes with complete success at school but since he seems very happy --- even the teachers say that, what would you call that? The teachers admit he's well-adjusted but say he doesn't relate to his peers, has very little in common with them but they don't pick on him. Since he started school in fact kids caught on that he would be very happy if they brought him broken electronic items to take apart or try to fix and the other parents laugh when they meet me how when things break they have to take them to school to give to my son.

[RSmithOpt]

Rush is on again about this subject.....I think he misses the point about AS vs other types of autism.

[Triple Word Score]

Thank you for the ping.

I'm recovering from major surgery or I'd comment in more depth. God bless you both and your sons. It took me a long time to see Asperger's as a kind of spiritual armor rather than a disability first, but my son is less severely affected and hasn't ever shown that he is bothered by his social isolation. Highly verbal kids are a whole other world from the other end of that spectrum, but you know Heavenly Father made them perfect for what they're here to do and be....