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

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?' "

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.

"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."

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.

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.

"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."

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."

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.

"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.

"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."

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."

I think it's terrific that you now have a diagnosis and are aware enough to work on it.

Not to riff on me too long, but for many years I denied that I had epilepsy. I took meds off and on for years figuring that I was "fine" and it was too much stress or not enough sleep that caused the seizures. I finally, at 44 realized that I am NOT fine and I had better take my phenobarbital every day or I could kill myself in the car or my children or someone else who was innocently going about thier business when I seized and crashed into them. Thank God, I have always either been at home or at work and not driving when I have had the seizures.

My middle son has some of the symptoms you mention. He is socially oblivious and says whatever pops into his mind, many times very hurtful or insensative to the listener. For instance, I had colored my hair and he told me it looked "hideous." He also feels his food all the time, even though he is now 14. Is exquisitley sensative to smells and tastes and noise. What other 14 year old listens to TV with the sound practically turned off? He is a brilliant A student and very intolerant of the lesser intellect of his classmates, yet he won't push himself for fear of failing at the task he has set.

He doesn't just want to be a doctor/lawyer/Indian Chief, he wants to be the Surgeon General, Supreme Court Justice, Cochise. We are trying to get him to lower his sights and set realistic goals since he gives up when he makes a blunder, no matter how small.

I agree that it is not funny. I was disappointed that Rush seemed woefully uninformed about autism and Asperger's syndrome.

I have regular contact with a young child who seems to be suffering from some type of autism. It is most evident in her loss of language skills and very obvious in her inability to relate to children she is exposed to. She does not know how to interact socially and it is a very sad thing to watch. She also has many other classic symptoms. It has nothing to do with shyness. Rush sounded ignorant to use that description.

I didn't even bother to read the story, but I heard Rush speak of it and cringed when he poked fun.

Thanks. It's extraordinarily rare that I'll talk about the subject because I don't like to think of my childhood & teens. I spent so many years willing myself not to remember them that they are but an evanescent blur to me now even when I try. It's actually quite an interesting experience when some vivid memory will burst into consciousness after not having remembered it since then.

Those three realizations however were so memorable they've always been as crystal clear to me as if they'd happened yesterday. I can picture each one like it's happening right now.

Anyhow, I just went into this because some of the comments above were extremely ignorant and insensitive...

I think it's terrific that you now have a diagnosis and are aware enough to work on it.

It's definitely helped! When I first came on the discovery it seemed so pointless because there's no cure, but just the self-awareness to work with it and modulate your life accordingly can make a huge difference.

In any event, it does sound as if your middle son may very well have some elements (at least related) though I'm definitely not trained to make any kind of diagnosis, to say the least. The good thing is that people can and certainly do live very successful lives with Asperger's and other mild forms of autism. The biggest impediment is of course in the realm of self-fulfillment and self-valuation and emotional well-being, but it can all be worked out. Of course, the severity and particular arrangement of characteristics make a big difference.

Most people that I've known including myself who've dealt with this and other variations of mild autism would say that it becomes much easier in adulthood; that it 'smooths itself out' you could say.

Thanks. I am fortunate enough to have an undergrad degree in Psychology and have worked with troubled teens enough to know that my boy is "just" a nerd who, like you have, can be coached into modifying his behavior. He has improved a great deal in the last two years.

However, it is exhauasting to us and to him, that he must be corrected about fingering his supper and telling his little brother to shut up every meal.

My main concern is his choice of equally dorky friends who have the same flaws. I have approached their parents about this and get the "boys will be boys" line all the time.

I understand the disorder too. Though very sociable for the most part, I myself find myself mentally wandering in social settings sometimes. I can concentrate well on a lecture or something technical, written or oral, but there are times I don't have a clue about what's going on in a social setting because my mind is caught up with something else. It's like being in the center of something and trapped and looking out. I guess it's the way a I process things into the brain. Sometimes, I never even stop to think what another person may be actually thing or feeling. I'm just focused on one thought or subject they have brought up. Those are the days when my brain is busy processing 10-50 sometimes unrelated thoughts at the same time in a 5 minute period. I just figure that it's wasted energy to try and guess at what all someone may be thinking, body language, etc.

Just say want you mean and get on with it!

I can remember dates, numbers and facts to a tee; however, I only remember conversations in a general sense...not exact words, tones of voice, body language, what they were wearing, etc. I've seen lots of movies, but I couldn't tell you a lot about who all was in them, the lines, what the main characters wore in a scene unless it was a really good film (i.e. Shawshank Redemption, Tombstone, etc.)

DAMN! This made my afternoon! Glad to hear I'm not the only one that's screwed up!!.

I know what you mean. I cannot use the excuse "I forgot" a date, a number, time, a face, or an event... because I remember them perfectly.

LOL - the problem comes when it's putting faces, events, circumstances, etc with them. I'm hopelessly lost.

I went to a casino and showed my ID to the guy (I'm pretty young). He asked me to recite my driver's licence number.

I did.

Perfectly.

Only it was a driver's licence I held in another state, almost 6 years ago.

Talk about a faux-pas. Especially when I argued with him that it was my license number.

When I was in High School, and even now sometimes, I "dumb down" my words and sentences at times.

I never "got" why other people didn't speak the way I did.

Slang is also hard for me sometimes. LOL I somehow always misuse some words and phrases. So I just speak plainly. That can get wierd too.

I also drank and "smoked" to keep up with them too...

Well, for what it's worth, despite what I'm describing it's worth noting (even emphasizing) that I've become very contented and comfortable with my life over the past decade or so. I've found my 'niche'.. =) I guess it's the nature of the thread to focus on the negativity of it all but it's not quite as dismal as it may come across.

More directly on your son: yep, dorkiness is certainly not the most unusual of traits. ;^) They can usually look forward to becoming the more successful people in life. Of course, you surely don't need me to know all that. BTW, the interesting thing with me is that I'm not sure the kids I went to school with would've called me a dork, per se - mainly just "eccentric" and "antisocial" (I distinctly remember both).

They basically thought I was (way, way, way) off in my own world, which was true. The thing is, just to be frank, I was about as attractive as a guy can possibly get and that pretty much took the edge off things. That's just how it is at that age.. Of course, I was totally oblivious until sometime during college to all that and also to why girls kept bothering me so much , but hey! =)

That being said I was extraordinarily unhappy in my teens. I desperately wanted a social life but had no clue how to go about getting one and so I 'deadened' myself emotionally or whatever. The one point I'm getting at is that everything looked fine externally - just very antisocial - but internally it was a big huge mess - and that became very, very clear in my twenties when all hell broke loose..

Like I said, I don't remember my teens in any detail at all - just the broad strokes of what it was like - but there it is.

Now that's enough of that!

Yes, institutions that are designed to "normalize" their inmates do have difficulty with those who don't fit their routine.

That's why we pulled our son from middle school and homeschooled him until he was ready for college. He graduated last year. I doubt if he'll ever fit into a conventional workplace (office or production facility), but he has marketable skills and is learning how to market them on his own. We're proud of his progress. Sorry to hear about your facilitiy.

Suggested readings:

http://www.cantrip.org/gatto.html

http://www.johntaylorgatto.com/chapters/index.htmhtml

Disclaimer: Opinions posted on Free Republic are those of the individual posters and do not necessarily represent the opinion of Free Republic or its management. All materials posted herein are protected by copyright law and the exemption for fair use of copyrighted works.