It is a virtual epidemic. One in 88 American children is diagnosed with autism-spectrum disorder, according to the Centers for Disease Control and Prevention. Earlier this week, Representative Darrell Issa, chairman of the Committee on Oversight and Government Reform, held a hearing on how the federal government can better respond to the dramatic rise in autism rates. Yet for all this concern, one large affected group is being routinely overlooked: the siblings. Of the 839 studies reported within the past four years in the Journal of Autism and Developmental Disorders, only four were devoted to siblings, and their primary focus was on genetic risk rather than life experience.
CAST YOUR VOTE! Chase Bank is sponsoring the American Giving Awards and one of the charities on the list is Surfer’s Healing. Based in San Juan Capistrano and founded by a couple with an autistic son, Surfer’s Healing’s mission is to provide autistic individuals with an opportunity to connect with the ocean through surfing.
I’ve mentioned how much I love the ocean in previous postsand how well my boys did with their visit back home to Maui.
The idea that autistic individuals find the ocean therapeutic is one that I support and there are many cool stories about this. There was a great documentary sponsored by Patagonia called “Come Hell or High Water” that talks about the evolution of bodysurfing, it’s raw and deep connection with the ocean and nature, and stories of autistic kids and their connection to the water. Another individual I’ve mentioned before…
As a parent of who has had my share of battles with my school district’s Dept. of Special Education, I have come away with 3 take-home messages that I take with me every time an IEP meeting comes up:
1. The director of a Special Education Dept. is the person who has the least amount of knowledge of how my son thinks, acts, and is capable of achieving.
2. Whenever possible and if left without opposition, school districts tend to follow the course that causes them to spend the least amount of money to properly educate my child.
3. I am ultimately responsible for understanding my child’s IEP including the methods used by the district/teachers, and the state and federal laws that govern a child’s right to FAPE.
So what does this mean? It means not only do I have to know my child, I have to know what the teachers are doing (right or wrong), I have to know what resources are currently available to me as a parent, what my child is legally entitled to under the law and finally, what options above and beyond the school’s purview are better for my child. I need to know the whole ball of wax.
To make a long story short, shortly after my son entered in-district Kindergarten from an ABA-based Pre-K, we knew the district’s methodology (TEACHH) was not a good fit for him. Moreover, the district did not have a formal plan or experience teaching autistic children. For many years, Mike wound up stuck in a system that not only undid all that he learned previously, but tried to teach him in an ineffective manner; behaviors naturally escalated. We had to fight for formal BC/BA evaluations and were subjected to off-the-cuff comments suggesting psychiatric disorders as the underlying cause of behavioral outbursts. We had to fight for, and sometimes provide, TouchMath books that helped him immensely. We had to fight for a 1:1 aide during school. It took years to get a psychologist trained in ASD to coordinate an educational plan and related services. When we decided that Mike would thrive in an out-of-district placement that was ABA-based, we needed to bring an attorney to our CSE meeting to show how committed we were to that goal. When the time came for his triennial evaluations, they were incomplete; the district still tried to make recommendations based on them, but we saw this as that avenue to have Mike assessed properly by properly trained clinicians. When the district relented, and approved an evaluation by the Hofstra University Diagnostic and Research Institute for Autism Spectrum Disorders, those clinicians eventually found in Mike was what we, as his parents always knew: that he had an intelligence that needed to be harnessed and focused in an appropriate setting.
The rest, as they say, is history. Sometimes you have to be a real pain in the ass, but it is sooo worth it.-Ed
School districts should reimburse parents for independent educational evaluations of students with disabilities, at least in some cases, a federal court is affirming.
Though the U.S. Department of Education has long indicated that parents have the right to an independent opinion at public expense under certain circumstance, the Jefferson County Board of Education in Alabama challenged the rule. The school district declined to reimburse parents named in court papers as Philip and Angie C. after they sought an outside evaluation when they disagreed with the district’s assessment of their child, A.C.
The Jefferson County Schools argued that paying for parent-solicited evaluations goes beyond the scope of the Individuals with Disabilities Education Act because the long-standing federal law does not specifically mandate it.
“The regulation at issue here is valid so long as public financing of a parent’s IEE is consistent with the intent of Congress in enacting the IDEA,” the judges wrote in their opinion.
The court ruling notes that federal lawmakers have reauthorized the IDEA numerous times without taking away the right to a taxpayer-financed independent evaluation, which the Education Department implemented in the early days of the IDEA.
This is an article from New York magazine, which in essence asks: does everyone have Asperger’s? It’s a fairly long read, but interesting; it does tackle a new issue– that of self-diagnosis, the proliferation of which I have noticed tangentially while following Autism-related posts on Twitter, etc. So, if you are a nerd, fairly tech-savvy, singularly focused, quirky, aloof or brilliant, you too might be found somewhere on the Autism Spectrum. -Ed
“Is every man in America somewhere on it?” Nora Ephron wondered about the autism spectrum in an e-mail to a friend a few months before her death. “Is every producer on it? Is every 8-year-old boy who is obsessed with statistics on it? Sometimes, when we say someone is on the spectrum, do we just mean he’s a prick? Or a pathological narcissist? I notice that at least three times a week I am told (or I tell someone) that some man or other is on the spectrum.”
Ephron was hardly alone. In August, after a string of campaign-trail bloopers by Mitt Romney (e.g., at a New Hampshire parade, he described his lemonade as “lemon … wet … good”), noted diagnostician David Shuster, a television personality at Current TV, floated the idea that Romney might be on the spectrum. Shuster cited “an uncle who specializes in the field of Asperger’s”—a mild variant of autism—who had “suggested that perhaps Mitt Romney has some sort of form of Asperger’s because he’s so socially inept in terms of being able to connect with people. What he thinks is funny is really sort of not so funny. I sort of wonder if there’s some sort of tic or something that he has that’s related to that.”
Meanwhile, out on the Great Plains, one Dennis Stillings, writing in the Bismarck-based Dakota Beacon about Barack Obama, has adduced such telltale evidence as his “legendary clumsiness … He has actually bowled a 37,” “verbal glitches—possibly the reason for the ever-present teleprompters,” and “infamous inability to relate” to arrive at a boldly contrarian thesis: “Obama may well not be narcissistic at all, but simply manifesting a typical feature of autism.” Stillings then passes along the opinion of a friend of a friend “who actually works with autistic people” that the president of the United States “likely” has Asperger’s, and speculates that this “may or may not be of significance” to the Obama administration’s considerable funding of autism research.
The diagnosis is everywhere: Facebook’s former head of engineering has stated that Mark Zuckerberg has “a touch of the Asperger’s.” Time suggested that the intensely awkward Bill Gates is autistic; a biographer of Warren Buffett wrote that the Oracle of Omaha, with his prodigious memory and “fascination with numbers,” has “a vaguely autistic aura.” OnCelebrity Rehab, Dr. Drew Pinsky deemed Dennis Rodman (selectively hyperfocused, socially obtuse) a candidate for an Asperger’s diagnosis, and the UCLA specialist brought in to make it official “seemed to concur,” Pinsky told viewers. On the Asperger’s community site Wrong Planet, threads like “Real life celebrities who have or probably have Asperger’s” include Jim Carrey, Adolf Hitler, Daryl Hannah, Slash, Billy Joel, J. K. Rowling, and Adam Carolla, who makes the cut because “I’ve heard guests on his podcast remark on his lack of eye contact.” “Kanye Probably Has Asperger’s,” BuzzFeed recently declared.
Still others are seeing it in themselves. David Byrne: “I was a peculiar young man—borderline Asperger’s, I would guess.” Craigslist founder Craig Newmark, noting his poor eye contact and limited social competency, blogged that Asperger’s symptoms “feel uncomfortably familiar.” Dan Harmon, the volatile creator of NBC’s Community, told an interviewer last year that he had boned up on Asperger’s symptoms when researching the character Abed: “The more I looked them up, the more familiar they seemed.” Dan Aykroyd told NPR’s Terry Gross that he was diagnosed with Asperger’s as a child (a puzzling claim given that the diagnosis didn’t exist prior to 1981, when Aykroyd turned 29); Aykroyd insisted he was being serious, and as evidence of his continuing symptoms he noted his “fascination with law enforcement and the police.”
What is happening? What cultural through-line has emerged that would join such surreal-life bedfellows as a pop-piano-playing crooner, a flamboyant professional basketball player, a reclusive children’s-book author, a twentysomething Internet gazillionaire, and a genocidal madman together in diagnostic brotherhood? How have we reached a point where partisans of left and right can regard the opposing candidates for the highest office in the land and see … an arcane brain disorder? “It’s an epidemic,” Ephron wrote in her e-mail. “Or else a wildly over-diagnosed thing that there used to be other words for.”
Every generation has its defining psychiatric malady, confidently diagnosed from afar by armchair non-psychiatrists. In the fifties, all those gray-suited organization men were married to “frigid” women. Until a few years ago, the country of self-obsessed boomers and reality-TV fame-seekers and vain politicians and bubble-riding Ponzi schemers made narcissistic personality disorder—diagnosis code 301.81 in the American Psychiatric Association’s Diagnostic and Statistical Manual of Mental Disorders, fourth edition—the craziness of the moment. And who among us has not proudly copped to our own “OCD” or “ADD,” deemed a mercurial sibling “seriously bipolar,” written off an erratic ex as “obviously borderline,” or nodded as a laid-off friend pronounced his former boss a “textbook sociopath”? Lately, a new kind of head case stalks the land—staring past us, blurting gaucheries, droning on about the technical minutiae of his boring hobby. And we are ready with our DSM codes: 299.00 (autistic disorder) and 299.80 (Asperger’s disorder).
The pros have led the way. In the nineties, clinicians began reconceptualizing autism from a singular disorder to a cluster of related conditions on a spectrum of severity; as the criteria broadened to encompass less acutely impaired people—such as the more verbal group diagnosed with Asperger’s—prevalence rose dramatically. Before 1980, one in 2,000 children was thought to be autistic. By 2007, the Centers for Disease Control were reporting that one in 152 American children had an autism-spectrum disorder. Two years later, the CDC updated the ratio to one in 110. This past March, the CDC revised the number upward again, to one in 88 (one in 54, if you just count boys, who are five times as likely to have one as girls). A South Korean study from last year put the number even higher, at one in 38. And in New Jersey, according to the latest numbers, an improbable one in 29 boys is on the spectrum.
Despite much debate about the causes of the so-called autism epidemic, the consensus among experts is that the increase is mostly due not to a rise in incidence but to greater awareness, recognition, and testing, and to the wider parameters of who qualifies for a place on the spectrum (New Jersey, for instance, has some of the most robust autism services in the country). Such elasticity is nowhere so relevant as at the fuzzy, ever-shifting threshold where clinical disorder shades into everyday eccentricity. The upper end of the spectrum is the liminal zone where Aspies, as people with Asperger’s call themselves, reside.
But this is not a story about Asperger’s, autism, or the spectrum—those very real afflictions that can bring untold hardship to the people who suffer from them and to their families. It is, instead, a story about “Asperger’s,” “autism,” and “the spectrum”—our one-stop-shopping shorthand for the jerky husband, the socially inept plutocrat, the tactless boss, the child prodigy with no friends, the remorseless criminal. It’s about the words we deploy to describe some murky hybrid of egghead and aloof.
Like the actual clinical disorder, the cultural epidemic in scare quotes may have less to do with changes in the world than with changes in those seeing it. To some degree, the spectrum is our way of making sense of an upended social topography, a buckled landscape where nerd titans hold the high ground once occupied by square-jawed captains of industry, a befuddling digital world overrun with trolls and avatars and social-media “rock stars” who are nothing like actual rock stars. It is, as the amateur presidential shrinks would have it, a handy phrase for the distant, cerebral men with the ambition and self-possession necessary to mount a serious run for the White House. When quants and engineers are ascendant, when algorithms trump the liberal arts, when Kim Kardashian and Justin Bieber tweet about the death of Steve Jobs, when the hyperspecialist has displaced the generalist and everyone is Matrix-ed into the Internet, it’s an Other-deriding tool to soothe our cultural anxiety about the ongoing power shift from humanists to technologists. As the coders inherit the Earth, saying someone’s on the spectrum is how English majors make themselves feel better.
But anxiety alone (generalized anxiety disorder: 300.02) doesn’t fully explain it. There’s something admiring, too, in the cultural uses of Asperger’s, which makes it different from the psych put-downs du jour of previous eras. The popular but mostly false image of Rain Man–like asocial geniuses (whether on the sitcoms Big Bang Theory and Community, say, or in best-selling books like Jodi Picoult’s novel House Rules and Michael Lewis’s The Big Short) has helped create a mystique around high-functioning autism, and the idea that Asperger’s offers selective advantages has midwifed a generation of self-outers: See, for example, Pulitzer Prize–winning music critic Tim Page’s Parallel Play: Growing Up With Undiagnosed Asperger’s, or contestant Heather Kuzmich’s appearances on America’s Next Top Model.
And so we find ourselves in a weird place. A psychiatric diagnosis first observed in four boys more than half a century ago has become common slang, a conceptual gadget for processing the modern world. Weirder still: At the same time it soothes the insecurities of those who would weaponize it as insult, it flatters the vanity of those who’d appropriate it as status credential.
In 1995, when Ben Nugent was 17 years old, his mother told him she thought he had Asperger’s. This was particularly distressing to him, both because his mother was qualified to know—she was a psychologist specializing in the disorder—and because he was an aspiring novelist. As he puts it: “If what I had proposed to do with my life was to plumb the inner depths of other people, it could be a big problem.” He never actually believed he had Asperger’s, but at the time, it hadn’t yet become a pop-culture phenomenon, and when his mother asked him to appear in an educational video she was making about the disorder, he agreed. By the time he watched the film for the first time, he was 22, lived in New York, worked as an arts reporter at Time, and had a new set of friends, and it was clear to him that he was neurologically typical. His girlfriend laughed as they watched the video together and he kept objecting to his inclusion. “When I saw this video and saw what the other people in it were like,” Nugent says, “I was like, Oh my God.”
“I was totally awkward,” Nugent says of his younger years, “but awkward in a totally normal way. I was an aspiring hipster in a bad vintage polo shirt and a Blur haircut talking about the understanding of literature I had in fifth grade. So, really annoying probably, but not on the autism spectrum.”
Other than several years’ resentment toward his mother, who was profusely apologetic, and free ammo for opponents (“A girlfriend who wanted to win an argument would say, ‘Maybe your mom was right’ ”), Nugent seems to have survived the episode unscathed, and he’s become something of a student of the modern conflation of social awkwardness with autism. In his nonfiction American Nerd: The Story of My People, he included a chart that matched up the diagnostic criteria for Asperger’s with a list of classic nerd traits (social phobias, rule-bound speech, etc.). “If you look at certain nerd characters, like Jerry Lewis in The Nutty Professor,” Nugent says, “he’s basically acting like someone with Asperger’s or mild autism. He’s spastic, doesn’t understand social cues, is a savant.” More recently, Nugent wrote an op-ed in the Times lamenting the overdiagnosis of Asperger’s.
Not that Nugent himself is always rigorous in applying the label to others. “When I get mad at someone I have a retail interaction with, like if I’m attempting to buy a shirt from someone who doesn’t understand what I’m saying, later I’ll say, ‘That guy was kind of Asperger’s-y. It means: not sensitive to my needs. I’m guilty of using the term in a sloppy vernacular way like everyone else.”
The vagueness of the border between able and disabled has made Asperger’s controversial from the time it was coined as a diagnosis, in 1981, by English psychiatrist Lorna Wing. Wing named it after Hans Asperger, a Viennese pediatrician who in a 1944 paper had described four boys as sharing “a lack of empathy, little ability to form friendships, one-sided conversations, intense absorption in a special interest, and clumsy movements.” He called them “little professors.” (Asperger himself seems to have been a bit spectrum-y as a child, endlessly reciting the verse of Austrian poet Franz Grillparzer, to his classmates’ dismay.) By 1990, Asperger’s syndrome was in common usage among clinicians as a term to describe a distinct verbal subset of autistics. But exactly how Asperger’s made it into the DSM-IV,published in 1994, remains veiled in mystery.
The history of psychiatry is a long fade-in, a glacial zoom toward granularity. Autism emerged from a conceptual catchall called “childhood schizophrenia,” and Asperger’s, in turn, was carved out of autism. But the more fine-grained the distinctions, the more they threaten to overlap and blur into each other. The community of clinicians specializing in developmental neurology generally viewed DSM-IIIR, which had been published in 1987, as wildly overinclusive. It had only two categories of spectrum disorders—autism and the kitchen-sink PDD-NOS (pervasive developmental disorder-not otherwise specified)—and its imprecision was seen as having led to an alarming increase in the number of diagnoses.
The overarching agenda of DSM-IV, then, was to be more specific and to raise the bar for diagnosis. By the early nineties, the committee tasked with revising the taxonomy was focusing on whether Asperger’s was fundamentally different from high-functioning autism. But their work was conscribed to hashing out the pros and cons of creating a separate diagnosis for Asperger’s and didn’t extend to making a decision or establishing what the diagnostic criteria would be. That work would fall to nonspecialist higher-ups at the APA. Even as the committee finished several years’ work, its members had no idea whether Asperger’s would make it into the big book. “It was like the election of the pope,” says Peter Szatmari, a leading Canadian researcher who sat on the working group. “The message went upstairs, and we waited around for smoke to come out of the Vatican. And there it was.”
The science writers hired to draft the DSM-IV text inexplicably dropped one of the criteria the committee had agreed distinguished Asperger’s: gross motor clumsiness. And, arbitrarily, they decided that the criteria for Asperger’s would be the same as for autism, with simply a different number of criteria needing to be met to qualify. “Asperger’s got put in at the last minute,” recalls working-group chairman Fred Volkmar, head of child psychiatry at the Yale–New Haven Children’s Hospital, “with a lot of tweaking of it by powers on high … There’s so much of a rush to get the finished book done and copyedited and out. Things happen.” Volkmar says that for the PDD-NOS diagnosis, a copy editor who happened not to like an “and” replaced it with “or,” a seemingly tiny change that significantly expanded the diagnosis.
The publication of DSM-IV had unintended consequences. “We were glad that Asperger’s was included,” says psychologist Bryna Siegel, another working-group member, who directs clinical care at the autism clinic at the University of California, San Francisco, “but until the publication of DSM-IV, very few people had heard the term Asperger’s. And when it came out, a lot of clinicians let their fingers do the walking in DSM. There were fully trained practicing clinicians who really didn’t have any idea what Asperger’s was. Everybody with Asperger’s got diagnosed with Asperger’s, but a lot of other people got diagnosed with Asperger’s, too.”
Siegel, who has been running her clinic since the eighties, says she’s seeing “more false-positive assessments than ever before.” Of the roughly ten new assessments she’s asked to do every week—kids showing up with spectrum diagnoses from another therapist—six of them might not have an autism-spectrum disorder. This isn’t to say that they may not have psychological issues, only that those are either other disorders or they don’t rise to an impairing level. “A lot of kids are just delayed in development, slow to talk, or anxious, or hyperactive, and a lot of kids are just terribly parented.”
Siegel sees overdiagnosis and misdiagnosis as driven largely by economic and social priorities rather than medical ones. Some adults who might be very high-functioning seek a formal diagnosis because it enables them to, in Siegel’s words, “wallow” in their symptoms rather than “ameliorate” them, because they’re “a lunch ticket.” Poor parents want diagnoses serious enough to merit state-funded school services, and rich parents want the least stigmatizing diagnoses. (“When you say a kid is mentally retarded,” Siegel says, “parents try to talk you out of it.”) And some parents are simply flummoxed by their own kids’ irrational mood swings, refusal of food, or inability to express emotion. When these parents come to Siegel, they get a surprise: She diagnoses their children as suffering from childhood. “We see a lot of diagnosis-of-childhood kids, whose parents have never set limits, plus kids who are temperamentally difficult to raise.”
Also temperamentally difficult: husbands. Put-upon spouses have seized on the autism rainbow as a simple, esteem-boosting way to pathologize what used to be called “a typical guy.” Simon Baron-Cohen, a leading expert on Asperger’s at Cambridge (and, as it happens, the cousin of Sacha), has theorized that the autism spectrum represents the “extreme male brain,” turned up to eleven. Hence the ubiquity of spectrum references in the coastal power centers where Nora Ephron spent most of her time. And the Internet abounds with unhappy married women diagnosing their callous workaholic husbands with Asperger’s, whether or not a clinician has seconded their opinion. In a forum called Asperger Divorce Support Group, posters share war stories, some less harrowing than others: “My ex … did not GET a sunset. He took pictures of fall color trees last year and said, ‘I guess its cool looking, right?’ ”
“It’s become more frequent in the last five years,” confirms a Connecticut divorce lawyer who says she has represented parties in several cases where a wife accused the husband of being on the spectrum. “It’s women complaining, ‘He lines up my towels perfectly. He complains if his shoes aren’t lined up right.’ ”
Men have caught on and, in a kind of inverted gaslighting, begun to describe themselves as having Asperger’s as a way of controlling their spouses. “Having Asperger’s-like syndrome does not give you Asperger’s,” says David Schnarch, a Colorado-based couples therapist. “Having a big belly does not make you pregnant. I’ve not seen a single case of what I would consider to be diagnosable Asperger’s. But I have seen any number of cases of wives accusing husbands of it, any number of cases of husbands claiming to have it.” It’s the new ADHD, he says. “The wife doesn’t want to accept that the husband knows what he’s doing when he’s doing something she doesn’t like.” Schnarch recalls a man who phoned him the day before a scheduled initial couples session and announced that he’d just been diagnosed with Asperger’s. “As soon as this happened,” Schnarch says, “I knew I had difficulty.” He contacted the referring therapist, who said he’d suspected the man had Asperger’s because he said things to his girlfriend that were so cruel he couldn’t possibly understand their impact. As far as Schnarch was concerned, it was an all-too-familiar instance of sadism masquerading as disability. “If you’re going to perp, the best place to perp from is the victim position.”
Because Asperger’s lives on the outskirts of normal, and because its symptoms can resemble willfully antisocial behavior, there’s now a presumption of excuse-making whenever someone invokes it to get out of a pickle. Last October, South Park aired an episode in which the people at an Asperger’s group-therapy center turn out to be faking their symptoms and not even to believe in the reality of the disorder. (Cartman, meanwhile, mishearing Asperger’s as “Ass Burgers,” tries to fake it by stuffing his underwear with hamburgers.) “You’re not autistic,” a doctor tells Hugh Laurie’s abrasive character in an episode of House. “You don’t even have Asperger’s. You wish you did; it would exempt you from the rules, give you freedom, absolve you of responsibility, let you date 17-year-olds. But, most important, it would mean that you’re not just a jerk.”
The yen to see the world in SpectrumVision is not just a case of glib metaphor abuse. Some studies of twins suggest that autism traits are distributed throughout the population. And it’s now understood that there’s an autism phenotype, where the same genetics can manifest in mild forms in parents and as full-blown autism in their children.
No one has been so responsible for the spread of this idea as Baron-Cohen, who has conducted a number of studies showing concentrations of autism among techies. In 1997, he published one asserting that autistic children were twice as likely as non-autistic children to have fathers or grandfathers who were engineers; he found a higher rate of autistic traits among math students at Cambridge than among those in other disciplines; and he has argued that in Silicon Valley, geeks intermarry and are more likely to produce autistic offspring.
As it turns out, a striking number of criminal defendants diagnosed with Asperger’s are computer hackers. Misha Glenny, author of a book about cybercrime, is convinced that hackers are often people on the spectrum who end up outside the law by default—their lack of social skills combined with a surplus of computer know-how. “The Internet is what has made them—it gave them a place to be criminals,” he has said. Earlier this month, the British home secretary ruled against the extradition to the U.S. of Gary McKinnon, a hacker who in 2002 was arrested for breaking into dozens of American government computers in what a U.S. attorney called “the biggest hack of military computers ever.” McKinnon, who has been diagnosed with Asperger’s, has said that he was just trying to unearth proof that the government was covering up UFO secrets, including anti-gravity technology acquired from alien landings. He has become a cause célèbre, inspiring free gary T-shirts and a benefit song featuring Chrissie Hynde, Bob Geldof, and David Gilmour. McKinnon’s diagnosis dates only to 2008, after a television viewer with Asperger’s saw a news report about the case and contacted McKinnon’s lawyer, who then had McKinnon evaluated by Baron-Cohen.
Baron-Cohen has come in for criticism by scholars and some autism advocates who view his methods as unrigorous. Other researchers have pointed out that so-called autism clusters tend to be in areas with more highly educated people—who tend to marry older (a factor that correlates with higher autism rates) and who have the money to have their kids tested. “I don’t think Baron-Cohen understands the rudiments of genetics,” says Jonathan Mitchell, a high-functioning autistic who writes the Autism’s Gadfly blog. But Baron-Cohen’s work gets all the media play. In 2001, Wired published an article, “The Geek Syndrome,” popularizing the autistic-nerd meme. It was accompanied by Baron-Cohen’s 50-question self-diagnostic questionnaire, and afterward, says Bryna Siegel, whose clinic is a short drive from Silicon Valley, “we had an incredible number of phone calls. I told my assistant, ‘If someone has their secretary call, don’t call back. If they have a secretary, they don’t have Asperger’s.’ ”
The self-diagnosis boom has been accompanied by self-diagnoses that can be bracing in their unpersuasiveness. Craigslist’s Newmark has acknowledged that “psychologist friends” have dismissed his self-diagnosis as “hypochondria.” Bram Cohen, the founder of BitTorrent, has revealed that his self-professed Asperger’s, about which he has spoken publicly at great length, was suggested by his girlfriend and never confirmed by a professional. Nobel Prize–winning economist Vernon Smith, another self-diagnoser, has cited as a key symptom the “tremendous amount of strain” he finds in “a social situation that lasts a couple of hours.”
Aspies, self-diagnosed and otherwise, speak of the relief that diagnosis brings. For someone who may have gone decades feeling socially alienated, and blaming himself for it, knowledge of the condition can offer a key to the puzzle of his personality and the interpersonal challenges he’s experienced. It was “a biblical weight off,” and an explanation “for all those social banana peels along the way,” says Michael John Carley, who was diagnosed at 36, after his 4-year-old son was diagnosed with Asperger’s.
Carley has an unusual background for someone with a disorder characterized by difficulty in social interaction; a graduate of Columbia, he previously worked as a diplomat in Bosnia and Iraq. He is now a leading Asperger’s advocate, one of a vocal group who promote the idea of “neurodiversity” and consider non-autistic people to be “neurotypicals,” or “NTs,” with different but not superior cognitive styles.
The Aspie-pride movement—an extreme fringe of which goes so far as to argue for “autistic supremacy”—takes its intellectual framework partly from studies that have posited that autism is an evolutionary adaptation, enabling survival strategies including solitary foraging, and that a male in the ancestral environment might have benefited from being more systematic and less empathic than others. Penny Spikins, an archaeologist at the University of York, recently published a paper suggesting that autistics were responsible for nothing less than the Stone Age tool revolution. Others, such as Juan Enriquez, a “futurist” at Harvard Business School, have argued that autism isn’t so much a vestige of the past as a glimpse of what’s to come: “the next evolutionary step” in an increasingly data-choked world.
Less grandly, there may be something to the idea of an affinity between autistics and the Information Age, given that autistics, with their difficulty imagining minds apart from their own, tend to relate better to animals and machines than to people. Online, the off-putting physical manifestations of spectrum disorders are stripped away. Celebrity autistic Temple Grandin has said that “there is nothing out there closer to how I think” than the web, with its structure of associative links. The web is shaping our behavior in “what is broadly a more autistic direction,” argues behavioral economist Tyler Cowen, such as the way it lets us “pursue our identities and alliances based around very specific and articulable interests.” (Mobile phones, too: In the utilitarian, no-small-talk idiom of texting, he sees an autistic style of communication.)
The investor Peter Thiel has said of Internet companies that “the people who run them are sort of autistic. These mild cases of Asperger’s seem to be quite rampant. There’s no need for sales—the companies themselves are weirdly nonsocial in nature.” This is a vision of Internet culture as spectral, of whole corporations that miss social cues. It explains how services like Facebook and Google continually offend people with their missteps—whether changing privacy settings without permission, or photographing homes for Google Earth, or, in the case of businesses like Napster and BitTorrent, being completely indifferent to intellectual property—and then seem genuinely, naïvely surprised.
Still, it has become fashionable in some circles to describe the spectrum as the very womb of modernity. “If you were to get rid of all the autism genetics, there would be no more Silicon Valley,” Grandin told a ted audience. David Mamet, in his book Bambi vs. Godzilla, writes, “I think it is not impossible that Asperger’s syndrome helped make the movies,” citing such movie-director traits as “early precocity,” high information-processing capacity, attachment to routine, unconventionality, and social deficits. A recent ripple of business journalism has emphasized the narrow competencies of those on the high-functioning end of the spectrum as a competitive advantage: “In Praise of Misfits” (The Economist), “If You Really Want to Innovate, Put an Autistic Person on Your Team” (Business Insider). Specialisterne, a Danish company, employs 60 people on the spectrum to do software testing and other repetitive tasks.
Cowen, one of the most prominent champions of autism-as-superpower, came to believe he has “an autistic cognitive style” after receiving an e-mail suggesting as much from a reader of his blog, and has credited his take on autism as being “much influenced” by his former colleague Vernon Smith. In The Age of the Infovore, Cowen makes the energetic if labored case that autism is “a hidden cultural force” and that “understanding human neurodiversity in terms of impairments is fundamentally misleading.” He extols autistics’ “cognitive strengths”: “They are better at noticing details in patterns, they have better eyesight on average, they are less likely to be fooled by optical illusions … and they are less likely to have false memories of particular kinds.” In his zeal to present autism in a positive light, Cowen flirts with dottiness, writing things like, “Autistics are the culmination of Buddhist thought and indeed Buddhist practice,” and coming very close to diagnosing the entire country of Finland as autistic.
The same rose-colored impulse has driven an Aspie wave of revisionist psychopathography, in which such diverse historical figures as Thomas Jefferson, Orson Welles, Charles Darwin, Albert Einstein, Isaac Newton, Andy Warhol, and Wolfgang Amadeus Mozart are supposed to have been residents of the spectrum. The time-traveling diagnoses often feel like cloud-reading—the case for Darwin as Aspie, as set forth in Genius Genes: How Asperger Talents Changed the World, relies on diagnostic bullet points: his childhood as “something of a loner,” his “obsession” with nature, his routine of counting the laps of his nightly walks in later life. They also seem to have fueled more diagnoses in the present. “I got a letter from around the world from a man who was diagnosed when he was 80,” says Genius Genes co-author Michael Fitzgerald, a professor of child psychiatry at Trinity College, Dublin. “A lot of people read my book, and that was the first time they found they had autism. Someone rang me from China to say he’d read about his distant relative in the Civil War and for the first time realized he had Asperger’s.”
Even fictional characters come in for the treatment. In 2008, the Journal of Positive Behavior Interventions published a peer-reviewed article about “nonconforming, socially awkward” Bartleby the Scrivener, arguing that “retrospective analysis indicates that Bartleby may in fact have been a victim of the modern diagnosis of [autism spectrum disorder], more specifically, a high-functioning form of autism termed Asperger’s syndrome.” Cowen, for his part, avers in Infovore that Sherlock Holmes is “the most fully developed autistic character in the Western literary tradition.”
For clinicians in the trenches, the more exuberant efforts to link autism with genius can be exasperating. “Do blind people hear music more exquisitely than people with sight?” asks Siegel. “We don’t have any neurophysiological evidence that they do.” Similarly, most people with Asperger’s have average intelligence, with high IQs the exception. And many with ASD, and the families who care for them, suffer terribly. “There clearly are people with ASD who marry,” says Catherine Lord, director of the Center for Autism and the Developing Brain at Weill Cornell Medical College, “but they are not many. More and more people with ASD have jobs, but the majority are underemployed, or have jobs that don’t use their capabilities as much as possible. So these references to Einstein and Jefferson are not helpful.”
At 6 p.m. on a recent Wednesday, in a carpeted rent-by-the-hour room in a sixteenth-floor conference center near Penn Station, some 25 people have gathered for the monthly meeting of a Manhattan Asperger’s support group.
It’s a largely male, mostly white group, ranging from a teenager to people in their sixties. They seem afflicted, or visibly off, to different degrees. Some appear to be straight-up NTs. Some, shorts hiked high, look like central-casting nerds. A handful have strange affects: A young Orthodox Jewish man in his late twenties smiles to himself, and another young man holds his hands near his chest, silent and fidgeting. Many, though, are smiling and socializing. “I like your forest shirt,” one man says to a taciturn man named Gabe, who wears a green polo shirt patterned with trees.
Karl, a former engineer who runs the group for the Global Regional Asperger Syndrome Partnership (grasp), begins the meeting by having everyone in the room introduce himself: first name, diagnosis, employment and relationship status. As they speak, Karl chimes in occasionally, speaking in a distinctly enunciated, arrhythmic way. For a lot of the people here, Asperger’s isn’t their only problem. “Autism, borderline-personality disorder, depression, diabetes,” one person says. Another person says: “1997, self-diagnosed; 1998, clinically diagnosed.” A graphic designer named David got an online diagnosis after his six-and-a-half-year marriage crumbled: “My husband always said I had something.” Nearly everyone is single, and a good number live with their parents.
A British woman, talking about a popular Asperger’s memoir, John Elder Robison’s Look Me in the Eye, starts crying, saying what a relief it had been to read, flooding her with memories of her own experiences; she’d always thought she was “daft.” The room fills with a chorus of sympathetic voices (“It’s okay to cry,” another woman reassures her). These don’t look like people seeking an excuse, or imagining a set of problems, or lacking in feeling, or just being eccentric. They seem to see the world through a particular lens, to have significant if narrow competencies, to be really struggling.
And their world is about to get shaken up. Next May, the fifth edition of the DSM is to be published, and the APA has proposed to eliminate the Asperger’s diagnosis, folding it, as well as PDD-NOS, into the broader new all-purpose bucket of autism spectrum disorder. The thinking is that Asperger’s isn’t scientifically distinguishable from autism, and that a single diagnosis may help to combat the epidemic that is more diagnostic than real. But the debate has been fractious. Fred Volkmar, who’d headed the committee for DSM-IV, quit the DSM-5committee, and has been vocal about the likelihood that the redrawn map of who’s on the spectrum will cause a lot of people who currently have diagnoses to lose them. A report previewed in January suggested that as few as 45 percent of people who currently have Asperger’s or PDD-NOS diagnoses will retain them, though a study in The American Journal of Psychiatry, published earlier this month, put the number closer to 90 percent.
For the people in this room, Asperger’s is an identity as much as a diagnosis, and as much as this is a specialists’ debate with real-world implications (insurance, school services), it’s also an existential koan: If you lose your Asperger’s diagnosis, do you not have Asperger’s? Did you ever? grasp will continue to exist, but Karl tells the room that the AS may change to standing for Autism Spectrum, and Michael Carley, the head of grasp, has written a book titled The Last Memoir of Asperger’s Syndrome. “I think I would say, if the term Asperger’s helps you describe yourself and gives you community, use it,” Catherine Lord, who is on theDSM-5 committee, tells me. “The fact that we’re changing the medical diagnosis … Most people who use Asperger’s would not have met the DSM-IV criteria, so they’re using the term already as a colloquial term. And that’s fine. I don’t think anyone wants to take that away, it just isn’t a medical diagnosis. If someone needs someone to cut them slack, whether they have Asperger’s or not, that’s something they need to negotiate with their spouse.”
Among the members of tonight’s support group, people fall on both sides of the debate. “My belief,” says an older man named Allen, “is it’s impossible to distinguish Asperger’s from high-functioning autism. It has more to do with where you get a diagnosis than the scientific criteria.”
“What will it do for people who already have a diagnosis?” Gabe, in the green forest shirt, asks. “Where will we be? Anybody who agrees with me that Asperger’s shouldn’t be clumped under ASD, say ‘No.’ ”
There are lots of “No”s. Someone mentions that the New York State Assembly is considering passing a law to exempt the state from the DSM-5.
“Yes!” Gabe says, doing a closed-fist power salute. “We can’t just throw up our hands. What about Aspies and generations to come?”
“Woody Allen still makes movies about neurotics,” Allen points out.
There are many communities and agencies nationwide that train their EMT, Paramedic and Emergency Service personnel about how to recognize and treat autistic patients. As a former medic, I hope this training becomes mandatory, and is incorporated universally. ‘1 in 88’ doesn’t begin to scratch the surface; there are so many autistic adults in every community who are not factored into this equation. -Ed
COLUMBIA, Md. – First responders in Howard County will get training designed to better equip them in an emergency situation as they work to meet the needs of those with autism.
In a press release issued Monday morning, it was announced the Howard County Department of Fire and Rescue Services would be partnering with the Howard County Autism Society on a progressive training program to teach fire personnel and paramedics how to respond to emergencies involving individuals with autism.
The comprehensive training will be included in the department’s virtual academy and will be a requirement for all firefighters and paramedics. Organizers say it will include facts about autism, the characteristics of autism and tips for helping people with autism in emergency situations.
“As an organization, we are always striving to deliver the very best service to the entire community, including those with functional needs,” said fire/EMS chief William Goddard. “This new innovative training will be a great benefit to our personnel We are excited about this partnership.”
Part of the training will include an forum for feedback and questions in which parents of those with autism will be invited.
“Courses like this are critical to our development,” said captain Tony Concha. “As first responders, we want to be able to recognize and anticipate the unique aspects of interacting with members of our community. Joint training such as this, increases our awareness and comfort level when providing care during emergency responses.”
The training expands the efforts of the HCAS to better serve those with autism. Last spring, the HCAS launched a program with the 911 call center that give residents the option of placing a flag on their address, alerting responders of someone with autism at the home and may be unaware of danger, oversensitive or unresponsive.
When Wineman was diagnosed with autism at age 11, she finally had a name to put to her experience. Rather than use her diagnosis as an excuse and give up, she took the bull by the horns.
Today, Wineman, now 18, may very well be the next Miss America. She was crowned Miss Montana in June, becoming the first person on the autism spectrum to claim the sash. In January, she will travel to Las Vegas where she could become the first with the developmental disorder to capture the national title.
It’s been a long road for the self-described “oddball out” whose best friend as a girl was a Winnie the Pooh doll, which she still holds onto.
“He showed me that being different was okay and there was nothing wrong with pacing or sitting in one place for hours just thinking,” Wineman said. “I say why fit in when you were born to stand out.”
Encouraged by her family, Wineman began to break out of her shell after she was diagnosed and engage in school activities. Performing became a way for her to face her fears and learn to cope. Wineman joined the cheerleading squad, ultimately becoming team captain and appearing in the Macy’s Thanksgiving Day Parade.
Now less than four months into her term as Miss Montana, Wineman and her mother have already put 7,000 miles on their car traversing the state to present her platform — “Normal is Just a Dryer Setting‚ Living with Autism” — at schools, hospitals, conferences and parades.
“It’s amazing how people don’t accept other people just because they’re different. Being different is not something to look down on, but to be embraced,” Wineman said. “People need to understand. I want to talk to kids with autism too and share with them that it’s nothing to be ashamed of.”
Adjusting to the unpredictability of life as Miss Montana has been a challenge, says Wineman’s mother, Kimberley Butterworth.
“She has at times struggled,” Butterworth said. “There isn’t a set schedule, which can be very hard.”
When things get tough, Wineman relies on coping skills she’s developed through the years like listening to Celtic music on her iPod.
“With her iPod, she has been able to disengage for a minute, and plug herself into it and regroup,” Butterworth said.
When Wineman is not on the road she’s focused on preparing for the Miss America pageant by brushing up on the comedy monologue she will perform in the talent competition, exercising and eating healthy, and more often than not, walking in heels.
“I was never a girl to walk in heels, and I did not prepare. That was the hardest part,” she said.
Jan Holden, executive director of the Miss Montana Scholarship Program, thinks Wineman will have no problem at the national level.
“She’s a pretty special girl. She’s very intelligent. That girl’s got grace and poise, and she did phenomenal in her interview,” said Holden. “She’s come a long way, and it’s her doing.”
A 12-year-old child prodigy has astounded university professors after grappling with some of the most advanced concepts in mathematics. Jacob Barnett has an IQ of 170 – higher than Albert Einstein – and is now so far advanced in his Indiana university studies that professors are lining him up for a PHD research role.