Aptos, CA psychologist: Big change coming in how autism is defined. Asperger’s merges under autistic spectrum disorder. Are changes in diagnosis helpful?

Big changes come in 2013 with publication of a new, updated Diagnostic and Statistical Manual (DSM-V). One category which changes considerably is autism.

One wonders how Aspies view the proposed changes. Aspies by definition are not as severely afflicted. Their special category evaporates under the new diagnosis of autism. Aspies as a diagnosis will cease to be. However, their affliction will still exist.

What defines Aspies? Often they are referred to as “little professors”. They know a great deal about a few subjects. Talking for Aspies is not a conversation but more like a monologue. Aspies often are precocious at language and may appear gifted. Aspies have difficulties reading human social signals. They often have extraordinary gifts. Some people describe Aspies as perfect counterfeit bills. Their social interactions frequently are a disaster.

Whereas in DSM-IV Autistic Disorder is the most severe condition and PDD-NOS less severe followed by Aspergers, in DSM-V there will be one description titled Autistic Spectrum Disorder or Autistic Disorder.

One thing missing from the proposed definition for autism is how to quantify the degree that the person is handicapped. As the number of persons with ASD balloons, more care must occur in determining the degree of impairment.

One defining characteristic of the new definition for autism is “failure to develop.. peer relationships…” Does failure mean zero, zip, no relationships? In contrast, Aspies can and do have one way relationships and they seek relationships. Aspies have substantial difficulties making successful relationships happen.

Another characteristic of DSV-V autism is “lack of social reciprocity…” Lack means zero, zip, no social reciprocity.
Below is the proposed new definition of autism:

Autism Spectrum Disorder per the DSM-V
Must meet criteria 1, 2, and 3:

1. Clinically significant, persistent deficits in social communication and interactions, as manifest by all of the following:

a. Marked deficits in nonverbal and verbal communication used for social interaction:

b. Lack of social reciprocity;

c. Failure to develop and maintain peer relationships appropriate to developmental level

2. Restricted, repetitive patterns of behavior, interests, and activities, as manifested by at least TWO of the following:

a. Stereotyped motor or verbal behaviors, or unusual sensory behaviors

b. Excessive adherence to routines and ritualized patterns of behavior

c. Restricted, fixated interests

3. Symptoms must be present in early childhood (but may not become fully manifest until social demands exceed limited capacities)

Below is a story of an Aspie father and Aspie son…
This was published in the New York Times about ten years ago:

The Little Professor Syndrome They talk like adults and often have sky-high I.Q.’s, but their social skills are nonexistent. Can kids with Asperger’s syndrome, a recently diagnosed form of autism, harvest their strange talents in adulthood? By LAWRENCE OSBORNE
Asa Snyder at home. Around a circular classroom table, five 6-year-old boys are drawing pictures of blue whales with crayons. Mozart’s “Requiem” pipes away on a nearby cassette player; by the window, a group of sunlit bean-bag chairs looks inviting. One of the children, Asa, is turning out a waxy masterpiece with the meticulous care of a jeweler. The fins and tail of Asa’s whale, who is jumping out of the water, have been drawn with striking precision; a dialogue bubble percolates from its mouth. “Wow!” the whale is shouting.

“Look at him — he’s psyched,” the bespectacled Asa says in a curiously expressionless voice. “He’s so happy to be out of the water and turning double somersaults that he can’t stop talking.”

The teacher, Lauren Cacciabaudo, asks each boy how he has managed his day.

“How was your sitting, Henry?” she says to one boy.

“Three,” little Henry says, giving himself a grade from 1 to 3.

“Nice sitting, Henry! How about focusing, Jean Paul?”

“Three.”

“Nice focusing, Jean Paul. What about looking in the eye, Asa?”

“Three.”

“Nice eye contact, Asa!”

More Information on Asperger’s
Online Asperger Syndrome Information & Support

Yale Child Study Center

New York Autism Network

Further Information from The Center for Study of Autism
These sites are not part of The New York Times on the Web, and The Times has no control over their content or availability.

Glued onto the surface of the classroom table are pairs of cut-out handprints. Frequently, Cacciabaudo asks the boys to put their hands on these prints and keep them still. For there is a flitting energy of restless birds about these boys, even though not one of them looks up to inspect the stranger sitting in their midst. Instead, they fixate on a colorful pencil I have just bought at the Guggenheim gift shop. Bright green, it sports an elephant’s head with felt ears on a mountable spring. The boys are mesmerized.

“Where did you get that?”

“How old is that elephant?”

They bounce the elephant’s head back and forth, sticking their fingers into its grasping mouth.

“It’s prehensile!” Asa coos.

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Lawrence Osborne is a frequent contributor to the magazine. He last wrote about bacteriophages.

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At first glance, this brightly decorated room is no different from that of any other elementary school. Shelves are filled with storybooks; on the chalkboard, a vertical line of words reads “prudence,” “pretzel,” “prairie,” “purple.” But the nervous agitation of the boys’ hands, punctuated by occasional odd flapping gestures, betrays the fact that something is off kilter. There is also a curious poster on one of the walls with a circle of human faces annotated with words like “sad,” “proud” and “lonely.” When I ask Cacciabaudo about it, she explains that her students do not know how to read the basic expressions of the human face. Instead, they must learn them by rote.

he boys in this Manhattan classroom, part of a special education school run in association with the New York League for Early Learning, all have a mysterious condition known as Asperger’s syndrome — a neurological disorder that disproportionately affects males and is often connected to a striking precosity with language. The Learning Disabilities Association of America defines Asperger’s syndrome as “a severe developmental disorder characterized by major difficulties in social interaction and restricted and unusual patterns of interest and behavior.” Although sufferers display behaviors associated with autism — monotonic speech, social isolation, a paucity of empathy — they are not mute or incapacitated. Indeed, the outsize vocabularies of children with Asperger’s often make them seem less disabled than gifted. In the United States, the syndrome was only made official among psychologists by entry into the D.S.M.-IV, or Diagnostic and Statistical Manual of Mental Disorders, in 1994.

Asa Snyder, Henry Goldsmith and Jean Paul Stiller doing their best to pay attention at school.
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The precise relationship between Asperger’s and autism remains to be untangled. Dr. Richard Perry, a child psychiatrist at N.Y.U. Medical Center, argues that Asperger’s syndrome shares a basic triad of dysfunctions with autism: problems with social interaction, with communication and with play. Both types of children, he says, have perplexing difficulties in “reading” human social signals like facial expressions and dealing with the nuanced to-and-fro of ordinary conversations. “For some reason we don’t yet fully understand,” he explains, “Asperger’s kids cannot decipher basic visual social signals. This leads people to see them as emotionally disturbed.”

Or brilliant. For the flip side of this somber picture is a recognition that Asperger’s sufferers may also have extraordinary gifts. Consider Glenn Gould. The eccentric Canadian pianist, who died in 1982 and who retired from the concert circuit at age 31, was notorious for his bizarre behavior: he had a phobia about shaking hands, ate nothing but scrambled eggs and arrowroot biscuits and rocked incessantly at the keyboard. At the same time, Gould’s obsessive focus and prodigious memory helped give his legendary renderings of Bach their burning intensity. Might Gould have been an Asperger’s sufferer? Timothy Maloney, a musicologist who manages the Gould archives, suggested precisely that at a recent academic conference.

Others scholars have retroactively applied the Asperger’s label to oddball intellectuals ranging from Vladimir Nabokov to Béla Bartok to Ludwig Wittgenstein. Nabokov’s hypertrophied vocabulary and obsession with butterflies, some say, may qualify him for the disorder (though an equally focused obsession with nymphs seems somewhat less incriminating). Such claims may be dubious, and probably infuriating to lepidopterists, but the argument is seductive to many: could the very qualities that make Asperger’s people so strange lie at the root of their peculiar talents?

This sense of potential explains why kids with Asperger’s are being grouped together in special-ed classrooms. “If you look at these children, you can see at once that they don’t have classical autism,” says Jeanne Angus, director of the New York League school, who stops by Cacciabaudo’s class for a visit. “They’re normal in so many ways. They’re often very sweet. And they’re often amazingly precocious, with sky-high I.Q.’s. But look closer and you’ll see cracks. Many of them have had appalling difficulties in the regular school system.”

Scholars have retroactively applied the Asperger’s label to oddball intellectuals ranging from Glenn Gould to Vladimir Nabokov.

Those difficulties include temper tantrums and erratic behavior that can unnerve the most strong-willed teacher. Angus nods toward Asa. “When he first came here, he would roll around the floor all the time, just to get a feel for its texture.” The boy had no idea that this was inappropriate. “The thing is,” she goes on, “everything has to be taught to them — everything. When you ask them at first, ‘How do you do?’ they will say something like, ‘Why do you want to know?’ They simply don’t understand social games.”

It is an impression of anarchic solitude that is often reinforced by the tendency of Asperger’s children to have obsessional interests. Angus tells me that Michael, one of the boys in the class, had a fixation with tornados when he first arrived at the school. “He knew everything about them. The statistics, the G forces, the wind velocities. He was like a videocassette about tornados, which he could rewind and play over and over. He was using technical terms I’ve never even heard of. And he was 5!” Michael also behaved like a tornado, whirling round the room and tearing everything up.

Other children have sometimes bizarre fixations. They will memorize entire TV shows and recite them over and over (an ability known as perseverative scripting). Other times, they specialize in memorizing everything there is to know about the oddest things: deep-fat fryers, telephone cable insulating companies, the passengers on the Titanic, exotic species of cicadas, the provincial capitals of Brazil. In one documented case, a child memorized the birthdays of every member of Congress.

Needless to say, these obsessions are deeply unsettling to parents. “Just imagine,” says Fred Volkmar, a child psychiatrist at the Yale Child Study Center, which is conducting the nation’s largest research project on Asperger’s syndrome. “You walk into a hamburger joint and your 5-year-old suddenly points at the fryer machine and cries, ‘That’s a Sigma Model 3000!’ What do you say?” It is a confusion that is compounded by the linguistic precosity of Asperger’s children. “Up to the age of 3,” Richard Perry says, “Asperger’s syndrome and autism are very similar. But then the former begin to talk. And how!”

Unlike the linguistically impaired autistics of the type depicted in the movie “Rain Man,” Asperger’s children talk like little professors. “They seem brilliant because they have this language,” Volkmar says. “But in reality, it’s fact-obsessed, fact-oriented. It’s rigid and insular. It’s not a social brilliance. Usually, their social interactions are a disaster.”

And according to Perry, this has been precisely the predicament of Asperger’s children in the past. “Frequently,” he says, “they have been misdiagnosed because they’re almost normal. They almost blend in, but not quite. That’s their tragedy.”

“They are,” says one parent at the Manhattan school, “perfect counterfeit bills.”

This baffling syndrome was originally diagnosed a half-century ago by the Austrian pediatrician Hans Asperger. In 1944, Asperger published his postgraduate thesis, “Autistic Psychopathy’ in Childhood,” which described many of the symptoms of the syndrome and ascribed a genetic basis for them. But Asperger refused to label children with a heavy psychiatric hand. Autism, he argued, was not a straightforward fate; the condition could be ameliorated through “pedagogical methods.”

Working in Nazi Vienna, Asperger was surely aware of the prospect of many autistic children being sent to concentration camps after being labeled mentally retarded. Thus, he ended up creating a more optimistic picture of the disorder than the vision of crippling disability that the psychiatrist Leo Kanner had described in his groundbreaking analyses of classical autism, first published in 1943. Asperger and Kanner mapped out two different ends in the spectrum of autism: the Asperger end was distinctly sunnier, with the possibility that such “high end” autistic children could thrive and even be gifted in their way.

After World War II, Asperger’s subtle contributions were temporarily lost as the center of gravity in child psychology moved from the German-speaking to the English-speaking world. Only in the 1970’s was Asperger’s research revived by a British researcher named Lorna Wing at the Medical Research Council in London. Along with her collaborator, Judith Gould, Wing set out to study autistic children in the London borough of Camberwell.

After a few months, Gould and Wing began to realize that the social problems of autism could be manifested in highly divergent ways. “For example,” Wing says, “instead of being socially aloof and indifferent, the classic autistic picture, some children made active social approaches to others, but in a nave, hopelessly inappropriate way.” Instead of having no language or stunted language development, some children had perfect grammar and a huge vocabulary. “Even so,” she continues, “they used this to talk on and on in a monotonous way about pet subjects.”

Asa with his parents, Lise Varrette and Philip Snyder. The elder Snyder was recently told that he, too, has Asperger’s.

Wing began to see a link between the children she was studying and the symptoms described by Asperger back in 1944. But unlike Asperger, who had believed in a clean distinction between autism and “his” syndrome, Wing saw the two as shading into each other. “We developed the idea of a very wide spectrum of autistic disorders, of which Asperger’s was only a part.” Wing published her findings in 1981 in the journal Psychological Medicine. At last, Asperger’s syndrome, the hyperverbal realm of autistic experience, had entered the realm of official psychiatry. “I felt,” Wing recalls, “like Pandora opening the box.”

Currently, the Yale Child Study Center is working with 900 families nationwide to produce the first empirical diagnostic for Asperger’s syndrome. One of its directors, Ami Klin, says that it was only seven years ago that Yale researchers began tracking socially isolated children who did not fit the profile for classic autism. “Cognitively, they were quite good,” he says. “But socially, they were disabled. They fell between the cracks.”

Asperger’s children, Klin feels, are unique. “Classic autistic people,” he says, “are bad at language, good at images; with Asperger’s people, it’s exactly the opposite.” Yet efforts to produce a cast-iron definition of Asperger’s has been difficult. Scientists involved in the Yale study are mapping out chemical reactions in the brain as it tries to decode faces and exploring abnormalities in “eye tracking” — the reaction of the human eye to social signals. This research may provide a way of pinpointing Asperger’s suffers. “But it will take time,” Klim cautions.

This diagnostic uncertainty makes it extremely hard to know exactly how many people suffer from Asperger’s. A 1993 study reported a prevalence of 36 per 10,000 children, while a 1999 paper reported a rate between 2 and 5 per 10,000. (The male to female ratio is at least 5 to 1.) Since Asperger’s entered the D.S.M., the number of students in U.S. elementary schools found to have some form of autism has soared by 154 percent to around 35,000, an increase attributable in part to Asperger’s awareness. Indeed, Asperger’s advocates tout figures as high as 1 per 250 of the general population, though this is most likely an exaggeration. Yet because Asperger’s sufferers usually manage to get by in the world, it is indeed possible that someone we know — someone previously dismissed as a bookish outcast — might suffer from it.

lightly built, with closely cropped black hair, glasses and a jittery manner, Philip Snyder is a 36-year-old aspiring actor who grew up in Berkeley, Calif. Only recently told by doctors that he suffers from Asperger’s, Snyder has spent his entire life in a state of bemused noncommunication with the rest of the world.

“I studied acting at Harvard,” he says resignedly, “but they threw me out because I was so rude to the other students. Of course, I had no idea that I was being rude. I thought I was actually being nice. But that’s the story of my life: one long non sequitur.”

Phil is the father of Asa, the boy who admired my elephant pencil. We are sitting in Starbucks on East 87th Street with Asa and Phil’s wife, Lise, from whom he is separated. Asa and Phil are telling each other about their nightmares.

“I saw my room collapsing,” Phil says.

“That’s cool,” says Asa. “Were you scared?”

“Very.”

“Do you have a lot of nightmares?” I ask Asa.

“I can’t sleep much,” he replies. “My mind doesn’t stop.”

Phil met Lise while they were both waiting on tables at the Vienna Cafe in Los Angeles. “I always knew he was a little odd,” Lise laughs. “But I was drawn to that very quality.” Their relationship soon grew troubled, however, and she left him while pregnant with Asa. “Phil and Asa,” she adds affectionately, “are very similar. They can tell you how to get to the moon, but not to their own rooms. I think Phil would agree with that.”

“Oh, yes,” Phil sighs. “It’s pretty bad.”

With his round-frame glasses and high voice, Asa is adorable enough to draw attention from doting granny-types around us. “I like Mary Poppins and Roger Rabbit!” he cries to one of our neighbors. “I’m going to be a director and a dentist.”

“And what do you like about Mary Poppins?” she says.

“Supercalifragelisticexpialidocious,” comes the reply.

“Ah.”

Asa was always verbally adroit, his parents recall; he spoke his first words at 7 months. At the same time, however, potty training and learning to get dressed were arduous chores. Asa also suffered from a common Asperger’s affliction known as auditory hyperactivity, meaning an inability to tolerate noise; he used to sit through entire movies with his hands over his ears. Asa also suffered from irrational fears, scared even by the popping of soap bubbles.

“Almost from the beginning,” Lise admits, “I knew that Asa was different. My conversations with him aren’t like normal adult-child ones. Instead, Asa fires off research questions. He never goes in for small talk of any kind. There’s no reciprocity or bantering trivia. He’s too focused. With him, talking is not really a conversation.”

Asa was always rather philosophical, too, Phil adds. “During his second birthday party, he came up to me and said, ‘I’ll never be 2 again.’ It reminded me so much of myself. Sometimes he would say simply, ‘I feel so alone.”‘

Tellingly, Phil identifies closely with Glenn Gould. He listens to his recordings constantly. I wonder, indeed, if Gould has not become something of a hero among Asperger’s sufferers, proof that the diagnosis is a blessing as much as a burden. Phil sees much of Gould in Asa, as well. Asa has also taken a shine to Gould and his music, although he oddly insists on referring to the pianist as “Mr. Ratburn” (a cartoon character on one of Asa’s favorite TV shows).

Asa also has an imaginary friend called Ehe, who is a brilliant inventor. Ehe, in short, shares Asa’s consuming interest in all things scientific. Ehe “shows” Asa how to draw diagrams of atoms so precise that they include neutron clusters and orbiting electrons. Asa’s own insights are sometimes worthy of Ehe: the previous night, says Phil, his son calmly informed him that written numbers were fast, whereas spoken ones were slow. Asa is similarly fascinated with black holes and likes to say that a human entering one would be “stretched like spaghetti.”

Inspired by the example of Gould, Phil clearly regards Asa as having his own Asperger’s intellectual vector, one that should be respected. “If you ride a wild elephant,” he is fond of saying, “you go where the wild elephant goes.” Indeed, he feels that the ability of an Asperger’s person to synthesize information in novel ways will eventually work to Asa’s advantage. “Society,” he says hyperbolically, “will actually become more and more dependent on people with Asperger’s to usher it through the difficulties ahead.”

Nevertheless, Asa has had his share of problems in the regular school system. He started out at P.S. 198 on the Upper East Side, until those problems became too much. “At first,” Lise confesses, “I didn’t want to admit to myself that he might be ill.” One telltale difficulty was Asa’s refusal to do the school fire drill. “He simply couldn’t grasp the concept behind it, that you had to pretend there was a fire when there wasn’t one. He’d say, ‘Is there a fire or isn’t there?”‘ Asa’s stubborn refusal to follow the imaginary logic of fire drills earned him time out. “It was a blow he never got over,” Lise says.

Perplexed, school officials suggested that he needed therapy. But what kind? Since Asa had not received a diagnosis of any official disorder and because he was not obviously abnormal, the school simply allocated him a posse of specialists: a communication therapist, a socialization therapist, a physical therapist and a speech coach. The quartet followed Asa around during his school day. “Needless to say,” Phil says, “they made him feel 10 times more abnormal than he had before.” Asa himself called them “the shadows.”

Eventually, Phil and Lise rebelled; they argued that Asa was gifted, a special case rather than a problem child. The school disagreed. “We were told,” Lise says, “that he couldn’t get into the program for gifted children because he was ‘quiet.’ Quiet? Since when is a kid singled out for being introspective?”

Only at the private New York League school, Lise adds, has Asa really flourished. The school’s STAR program (Social-Emotional Training and Academic Readiness) aims not to drum every Asperger’s characteristic out of the children’s heads but simply to help them control the more outwardly disadvantageous ones, enabling them to survive in the social jungle. Jeanne Angus explains that in the regular school system the emphasis is on “inclusion” — that is, lumping Asperger’s children with everyone else and hoping for the best. “It doesn’t work,” she says. “We feel that we need to get to the Asperger’s children as early as possible in order to get through to them.” They are, she goes on, usually unhappy and isolated in normal school, whereas in the tiny classes provided by a specialty school like hers, they are among peers who share their problems. “When we teach them the facial expression charts here, they are all learning the same thing,” she says. “When we make them focus and maintain eye contact, they all have to do it. It doesn’t make them feel abnormal.” The school recognizes that, with patience, Asperger’s children can at least learn to imitate social behavior that other kids learn intuitively. “We take it slowly, rather than forcing them to conform to what neurotypical children can do,” Angus says.

The school day is broken down into small periods in which socializing is strongly emphasized; even lunch breaks have structured conversations. Angus has seen Asa’s progress firsthand. “When he first came to this school,” she remembers, “he would clasp his hands together and jump up and down all the time. It’s typical self-stimulation that we see in a lot of Asperger’s boys. But he’s calmed down a lot.”

Asa’s experience is one that most Asperger’s parents can easily sympathize with. Echo Fling, the president of the Asperger’s Syndrome Coalition of the United States, is also the mother of an Asperger’s child. Her new book, “Eating an Artichoke,” chronicles the struggles of getting her son Jim’s ailment correctly diagnosed and then him eased onto the right pedagogic path.

“Because it wasn’t on the books until 1994, even getting diagnosed was a nightmare,” she says. “And Jim always seemed very precocious. But then he’d use memorized dialogue from movies to converse with people, and if you didn’t know the movie, you’d find it awfully strange! And he was so stoic, so seemingly emotionless. Give him an umbrella and a cigar, and he’d be a perfect mini-Winston Churchill. He had to be taught what a smile means.”

Recalls Phil: “I was always the cleverest kid in English, but I practically flunked college. I was always inventing personae for myself. One month I’d be Groucho Marx; then I’d be Sherlock Holmes. I was trying to find a character who people would like, but it never worked. Eventually they called me Mr. Peabody, that pedantic little talking dog!”

“What about Mr. Ratburn?” Asa pipes up, eyes twinkling behind his rather professorial wire frames.

“Yes, he’s a great character, isn’t he?”

“Personally, I’d rather be Roger Rabbit,” Asa says matter-of-factly. “Roger Rabbit can dance.”

urious about the kind of adults that Asperger’s children eventually become, I decide one night to drop in on the monthly Asperger’s parents’ meeting held in a social-services center on West 65th Street. Although most of the people here are frustrated parents of children who cannot find affordable targeted schooling, there is also a smattering of Asperger’s adults who show up to offer solidarity or to meet one another. I am not sure, however, quite what to expect.

I recall a haunting passage I have read recently in the American Journal of Psychiatry in which a 11-year-old Asperger’s boy tries to describe himself. He writes: “I am an intelligent, unsociable but adaptable person. I would like to dispel any untrue rumors about me. I am not edible. I cannot fly. I cannot use telekinesis. My brain is not large enough to destroy the entire world when unfolded. I did not teach my long-haired guinea pig Chronos to eat everything in sight (that is the nature of the long-haired guinea pig).”

Asperger’s kids often memorize everything there is to know about the oddest things: deep-fat fryers, telephone cable insulating companies, exotic species of cicadas.

With this unnerving prospect in mind, I fall in with the Asperger’s adult group, which is sitting somewhat to one side by itself. One of them is Mark Romoser, a Yale graduate in his mid-30’s. Unlike Phil, Mark has a more pronounced aversion to eye contact and seems to observe any interlocutor slightly sideways. Now a research assistant at Columbia University, he once hoped to enter graduate school in psychology but “had trouble obtaining recommendations from professors.” Mark is dry and droll, with a seductive, slightly effeminate drawl; after telling me that many Asperger’s people are huge Monty Python fans because it conforms to their actual rather absurd experience of the world, he asks me point-blank if I find him normal.

“Perfectly,” I say.

“Mahalo nui loa,” he fires back.

“Excuse me?”

He leans forward and says quietly: “Hawaiian. I must tell you, I hate living on the mainland.”

The “mainland,” for Mark, seems to be the realm of a suspect normality filled with what Asperger’s people often call “typicals” — those who are neurotypical or, to use the outlawed word, normal. Instead, he calls himself an “ex-pat waiting to happen” who has made Hawaii the object of his impassioned interest. Indeed, the full-time Manhattan resident now writes a regular column for an online magazine called enewshawaii.com.

But why, I ask, Hawaii?

“My mother thought it would be a good idea for me to swim with dolphins. So I found a woman in west Oahu who takes autistic people out for swims. She calls us ‘unique beings.’ That was that. I was hooked. After all, we’re supposed to be gripped by obsessions, aren’t we?”

He winks. I ask him about romantic relationships, and he shakes his head. He hasn’t had a girlfriend in years.

“That’s a tough one. I’d say the only place I could be considered popular on the mainland was college. But girlfriends. . . .” He shrugs. “You know, I was a big Deadhead at college. But I must have been the only one ever to leave a Dead concert completely alone.”

This inability to form close sexual bonds is widespread (though, as Phil shows, it is by no means universal). Fred Volkmar, the Yale professor, shared with me the example of one 18-year-old Asperger’s patient who simply stared at girls in his college cafeteria. When the unlucky object of this attention came up to him and asked him what he wanted, he would simply blurt out the carnal truth. Needless to say, the police were called on several occasions.

“When I was at school,” Mark says, “I was doing too well to be called mentally retarded. So they called me ’emotionally disturbed’ instead. That was the trendy label at the time. I’ve often wondered if it was accurate. I wouldn’t say disturbed, though. Dislocated more like.” Then he adds, “Except when I’m in Hawaii, of course.”

Says Judy Rivkin, the executive vice president of the Asperger’s Syndrome Coalition: “People forget that autistic and Asperger’s children grow up. They don’t just vanish into thin air. But we have to remember that you can often get by masking a disability, passing for something that you’re not. Many Asperger’s people seem gifted and normal, and maybe they are in some regards. But that doesn’t mean that they don’t have to face profound problems.”

In the end, perhaps Asperger’s sufferers perpetually swing between brilliance and isolation, between originality and awkwardness. Lise, for her part, recognizes that Asa alternates between wildly differing psychological states. “When I walk him from home to school,” she says, “I see him stepping from one state into the other. He puts on his ‘school face’ and goes from being lively and relaxed to being locked into a kind of monotone. It’s a startling transformation. But then, that’s the Asperger’s world in a nutshell.”