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Newsletter November 2012

It's November

The month when we here in the US were divided by politics during election season, and also the month of gratitude, thanksgiving and uniting with friends and family over the Thanksgiving holiday. While our office is still not fully cleaned up from the window damage caused by Sandy, we still are so grateful that all our staff and Board members are ok, even if some of their property damage has been beyond costly in so many ways beyond money.

This year, I'm thankful among other things for GRASP and the many voices of adults on the autism spectrum. And like every month, we have several articles to share with you:

In This Issue

Are you on it? New York Magazine looks at "how the spectrum became all-inclusive." (We're not crazy about this piece, but since GRASP was featured . . .

Is Asperger's a Vanishing Diagnosis That's Already Lost Its Meaning? (A welcome response to the above article)

Huffington Post Live video with GRASP Executive Director, Carley, Dr. Steinberg, Ben Nugent, and a Scherf debating whether Asperger's is a "fad"

Shift autism research focus from cures to managemen

Parents work to offer autism teacher training bill

Autistic High School Football Player Kicks Game-Winning Field Goal

Rapper Example suffered from Asperger's syndrome

Re-Thinking mental illness in children

IPODs as the next-generation autism aid

Stepbrother charged in death of autistic man

Sensory Overload: a video

We Can Now Add Forced Sweating To The Faux Autism Treatment List

Study finds no link between autism and gut microbes

Best,

Yvona Fast

Support Groups Manager

GRASP

The Global and Regional Asperger Syndrome Partnership, Inc.

info@...www.grasp.org

Are You On It?

If so, you're in good company. From Asperger’s to “Asperger’s,” how the spectrum became quite so all-inclusive.

By Wallace

New York Magazine, Oct 28, 2012

“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 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.” On Celebrity 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, , 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. 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 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 ’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 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

Next: Nugent on the overdiagnosis of Asperger’s.

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 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 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.

Next: “Until the publication of DSM-IV, very few people had heard the term Asperger’s.”

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 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

Next: The self-diagnosis boom.

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 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 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 , 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 , 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 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 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..

Next: Why there may be an affinity between autistics and the Information Age.

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 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. 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 . 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 Jefferson, Orson Welles, 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 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.”

Next: “More and more people with ASD have jobs, but the majority are underemployed.”

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 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

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 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, 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-5 committee, 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 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,” Lord, who is on the DSM-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 , “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 still makes movies about neurotics,” points out.out.

“Let’s keep calling ourselves Aspies,” Gabe says.

“Oh, hellz yes,” says a guy in back.

http://nymag.com/news/features/autism-spectrum-2012-11/

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Is Asperger's a Vanishing Diagnosis That's Already Lost Its Meaning?

Forbes Magazine, Oct. 29 2012

Wallace, writing in New York Magazine about Asperger’s and its use, overuse, and abuse as a term, begins his lengthy piece with a question from the late Nora Ephron:

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.”

The article ranges over a great deal of social interpretation of Asperger’s and autism, just as Ephron seems to have encountered. It’s true that this term has entered the lexicon as shorthand for a collection of traits–smart but awkward, socially inept–and that armchair psychologists (a.k.a. “pundits”) have suggested the diagnosis for everyone from the president to the perpetrator of the horrific Aurora movie theater shootings. But popular application of “Asperger’s” doesn’t make the recipient autistic any more than a recent application of the pejorative “retard” makes Barack Obama intellectually disabled.

Asperger’s is a diagnosis, one that’s been around now for a couple of decades, one that is codified in the current manual that clinicians use to make the diagnosis. If someone meets these criteria, they meet the definition of Asperger’s. Sitting on Fox or NBC and saying someone seems to have Asperger’s or deciding that the narcissist in your life must be an Aspie doesn’t, Picard-like, “make it so.” And dilution of the term into meaninglessness doesn’t unmake autism in people who are autistic.

The New York article comes around eventually to the fact that social abuse and casual use of the term aside, people with Asperger’s have significant deficits that unquestionably affect their quality of life, noting the high unemployment in this population, for example. But to get to that point at the end of the article, we must first dig our way through commentary from Bryna Siegel, a clinician who’s rather (in)famous in autism circles for her comment–repeated in the New York Magazine article and elsewhere–that if someone left their secretary’s number as a callback about a consultation for Asperger’s, she told her coordinator “don’t call them back” because people with Asperger’s don’t have secretaries. Comments like these, delivered with an attitude of blanket skepticism, do a real disservice to autistic people because they embed or confirm misconceptions in the public mind: people who claim an Asperger’s diagnosis are big phonies, and truly autistic people will never, ever amount to anything because they don’t function well enough to have secretaries.

As I note here, I don’t recall seeing anything in the criteria for an Asperger’s diagnosis that precludes having a secretary, although I see plenty to suggest having an assistant would be helpful. The people contacting Siegel are reaching out because they feel they might have discovered something significant and explanatory about themselves, and what do they get from this quarter? Radio silence in the absence of all other data because they have a “secretary.”

The crux of that comment seems to be related to function and that certain functions like verbal communication capacities or having an administrative assistant preclude an autism diagnosis. But I know several professionals who see a wide range of people on the autism spectrum and who have a very different attitude about the relevance of function. And autistic people themselves can and do speak to the realities of being someone for whom a diagnosis fits and who understands that th concept of function–as in “high” versus “low“–isn’t confined only to a capacity for self expression others can understand or to having a secretary.

After we wade through anecdotes about how people apply the Asperger’s diagnosis to rationalize a spouse’s poor behavior or a divorce, the NY Mag article takes us to a final scene of what people with the diagnosis experience, what they feel and talk about, what their struggles are. People with Asperger’s do struggle, in part because of an existing social construct that sees only their deficits and not their potential and in part because of a growing popsci dismissiveness and dilution of what “Asperger’s” even means, or what it will mean once it ceases to exist as a label. Confusion like this and the considerable overlap of “normal” and atypical behaviors in all of us leaves labels–Asperger’s, schizophrenia, bipolar disorder–open to these dilutions and casual applications, one reason I’d like to see an overhaul of the labeling approach in favor of addressing specific gaps. See, that way, my son could still get help but also possibly have a secretary someday.

And what about folks like those who contacted Siegel, callers whose success supported an administrative assistant but whose personal experiences left them seeking clinical insight? Many parents have epiphanies of recognition about themselves when their child receives an autism diagnosis, although a lot of us don’t pursue anything officially. Indeed, a recent genetics study

(news release) bears out the idea that hints of autism in the parents and other family members can become revelations in the child, something I’ll be writing about this week. But people like me who probably would have fallen under the spectrum label had it been around in our childhoods relate to, share, and deeply empathize with the struggles of autistic people, particularly when we see our children having these issues, too. And of course, we wonder where we fit in. People like my son still face these struggles and the popular perception of autistic people who can talk as fakers and phonies or as “just quirky.”struggles are real. If “Asperger’s Disorder” is diluted beyond recognition in the popular lexicon or effaced entirely from clinical terminology, those who meet the current criteria for it will still be around and still have all the behaviors that make it autism, even if someday, they have an administrative assistant of their very own.

http://www.forbes.com/sites/emilywillingham/2012/10/29/is-aspergers-a-vanishing-diagnosis-thats-already-lost-its-meaning/

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Video on Huffington Post Live

Carley, Dr. Steinberg, Ben Nugent, and a Scherf debate whether Asperger's is a "fad" on HuffPost Live.

http://live.huffingtonpost.com/r/segment/50941b3c2b8c2a425b000168

Shift autism research's focus from cures to management: Opinion

By Lilia Kang, Thursday, October 18, 2012

For a decade, the scientific community has made progress in the identification of potential genetic and environmental causes of autism. Myriad problems remain unsolved and untouched.

Many autistic children are medically fragile. They endure physical suffering from gut irregularity (reflux, diarrhea, pain, constipation), insomnia, seizures, adverse reactions to medications and significant allergies.

For example, a boy named Colin suffers from periods of constipation that force him to sip broth instead of eating ordinary table food. His allergy triggers aggressive behaviors. Doctors attempt to help him by ordering tests — but nothing helps. Medications are either ineffective or come with side effects.

Another child, , battles reflux and diarrhea. She clenches her fists, grinds her teeth and bangs her head against the wall in pain. Likewise, no medicine has helped her. A third child, , takes a cocktail of medications, yet remains in pain that makes him irritable and self-injurious, biting his hands to open wounds.

Effective treatment for these chronic disorders in autism still isn’t available. It isn’t only autism these children struggle with, but physical ailments and side effects of medications, as well. In these children, behavioral problems might be caused by medical problems. Doctors don’t yet understand these children.

What about those who have made it through childhood — autistic adults — who can’t control their behavior? Who is left to care for them? Frail, aging parents, or siblings, who can do little to control aggressive tantrums? “I have to protect myself from my son,” said one distressed mother. Another called police to handcuff his daughter as she lashed out violently and nearly broke her fingers.

The behavior of some autistic adults is hard to contain — even some hospitals won’t accept adults while they are raging. Instead, these adults are transferred to a psychiatric facility, where they are sedated to force sleep.

Few physicians care for autistic individuals. Even fewer are the facilities equipped to handle them. State budget cuts leave short-staffed the few institutions that can handle adults with autism.

What can be done? Much research and funding has been put toward discovering the causes of autism. It’s a search that undoubtedly will take a great deal more time, money and energy. Meanwhile, families with members who are autistic are fighting medical fragility, unable to find effective treatments for their loved ones.

We must shift the focus of our research from finding a cause to managing the medical disorders and planning for long-term care. The autism community is aging and expanding. We must acknowledge the suffering of families with autism, even while we continue to learn its origins. Private and public funds need to be channeled toward urgent research on medical disorders, treatment and long-term care. Provide incentives to the professionals willing to care for them. Create facilities to properly treat, educate and care for autistic individuals.

Families are in emotional crisis as they scramble to find footing. The numbers are growing and, each year, more people are diagnosed with autism. We must act now and care for those who are already living with autism.

Lilia Kang, a freshman at Communication High School in Wall, has interacted with autistic children for four years and performed autism research at the University of Medicine and Dentistry of New Jersey.

http://blog.nj.com/njv_guest_blog/2012/10/shift_autism_researchs_focus_f.html

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Area parents spur Moran to offer autism teacher training bill

By Ben Pershing Published: April 27, 2012

When pediatricians started questioning Arriaga about the development of her infant son, she struggled to understand why. “Some of the things that they told us were really kind of nutty,” Arriaga recalled. “At about 8 months: ‘Is he talking yet?’ Well, no, but he’s 8 months, and he was premature, so give him a break.”

When Tommy was diagnosed with an autism spectrum disorder at 18 months, Arriaga was even more incredulous.

“It was one of those things that was just shocking,” she said. “Honestly, my husband and I were very skeptical. .?.?. At the same time, we thought, ‘These are professionals.’ ”

The next surprise came after Tommy started public school in Arlington County. Arriaga realized what a growing number of parents, activists and school administrators have learned: The population of autistic children is fast outstripping the number of teachers trained to handle it.

So the politically savvy Arriaga, a former White House and congressional aide, joined other Northern Virginia parents in approaching Rep. P. Moran Jr. (D-Va.). Their lobbying efforts bore fruit Friday, whe Moran introduced legislation that would begin addressing that shortfall.

The AUTISM Educators Act would create a five-year grant program to train general-education classroom teachers on the best ways to identify and interact with students with autism spectrum disorders. While children with extreme forms of autism often require separate special-education classes, many with milder cases are mixed into the general population.

The grants would be targeted at school systems with high autism rates — 10 percent or more of the district’s special-education population — and would require the systems to partner with a university or nonprofit group to develop the training program.

That description neatly depicts Arlington, which has teamed up with Virginia Commonwealth University to provide autism training to some officials.

Arlington School Board Chairman Abby Raphael said that in 2003, there were just more than 100 students in the county identified with autism spectrum disorders. As of this year, that number had risen to 361 students — or 11 percent of the county’s total special-needs population — and by 2015, the number is projected to top 500. That rapid growth mirrors a national trend A Centers for Disease Control and Prevention survey released last month showed that the prevalence of autism has increased nearly 80 percent over the past decade. About one in 88 U.S. children (and one in 54 boys) has autism.

On one level, it’s a simple math problem: The number of children with autism is growing quickly, but school funding levels aren’t.

“It really comes down to budget,” Raphael said. “We provide lots of development for our teachers, but there are limited resources to do that.” Stone, the autism coordinator for andria public schools, said that with so many autistic students in non-special-education classes, “general-education teachers and principals have expressed concern that they are inadequately prepared to handle some of the behaviors” of autistic children.

Moran offered the bill with Rep. Mike Doyle (D-Pa.), the co-chairman of the Congressional Autism Caucus. They hope to add Republican backers soon.

Stone, the autism coordinator for andria public schools, said that with so many autistic students in non-special-education classes, “general-education teachers and principals have expressed concern that they are inadequately prepared to handle some of the behaviors” of autistic children.

Moran offered the bill with Rep. Mike Doyle (D-Pa.), the co-chairman of the Congressional Autism Caucus. They hope to add Republican backers soon.

Stone, the autism coordinator for andria public schools, said that with so many autistic students in non-special-education classes, “general-education teachers and principals have expressed concern that they are inadequately prepared to handle some of the behaviors” of autistic children. CDC study finds 1 in 88 children have autism. Health officials say it's partly due to wider screening and better diagnosis.

“The teachers are begging us to do something like this,” Moran said. “The school system is very receptive, and the parents obviously are the most focused. .?.?. Everybody likes it; so I’ve got to build bipartisan support.” Moran’s bill would move as part of a broader rewrite of the No Child Left Behind Act. That measure is scheduled for reauthorization this year. But nothing moves easily through the divided Congress, so it’s not yet clear whether the autism legislation has a good shot at becoming law

Arriaga knows Capitol Hill, and she knows politics — she quit her job as head of government relations for Amnesty International to spend more time helping Tommy — but she is hopeful that the need for action will help her cause.

When he turned 2, Tommy entered a preschool program for children with autism and spent three years getting what Arriaga called “very intensive” attention with teachers who were familiar with autism spectrum disorders.

But the story was different for teachers in the regular preschool classes on the same campus. “Privately, a lot of teachers would come up to me and say, ‘I have a degree in special education from 25 years ago, and we didn’t focus on autism,’ ” Arriaga said. She and her husband made sure Tommy spent some time in the adjoining, regular classroom. But that was a challenge, because “if you just put him in there, he doesn’t know how to say, ‘Do you want to play?’ .?.?. He doesn’t know how to say, ‘What’s your name?’ ” By the time Tommy entered kindergarten, Arriaga said, he had made “huge advances,” and it was clear “he would benefit from being in a general-education class with the proper support.” Arriaga and her husband are happy with her son’s kindergarten class and his teacher. But they have heard from other parents about classrooms where the teachers and aides simply have too many children to give the proper attention to those who need it.

“There’s a recognition that there’s a wave coming,” Arriaga said, “and what can we do?”

http://www.washingtonpost.com/local/dc-politics/area-parents-spur-moran-to-offer-autism-teacher-training-bill/2012/04/27/gIQAxGMMmT_story.html

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Autistic High School Football Player Has Moment for the ages, Kicks Game-Winning Field Goal

Starego's Boot Lifted Brick Over Favored Toms River North On Friday

October 23, 2012 10:00 PM

BRICK, N.J. (CBSNewYork) — A high school student with autism becomes a hero on the football field. Sounds like a good movie doesn’t it? Well, it’s a true story.

The score was tied with just 21 seconds left on the clock Friday night. Out trotted Brick High School’s Starego, an 18-year-old kicker who’s used to facing adversity.

Starego was orphaned at the age of 3 and then grew up with a long list of developmental issues. So when he jogged out on the field to attempt a game-winning field goal against favored Toms River North, one couldn’t blame him if he didn’t feel overwhelmed by the moment.

What happened next was something usually reserved for Hollywood. He split the uprights and the place went crazy. But there was nothing ordinary about that kick. It was a lifetime in the making, CBS 2's Otis Livingston reported Tuesday. “As soon as the officials went like this, I was a blubbering idiot,” father Ray Starego said, demonstrating the hand movement for a successful field goal. “I was just crying, but I wasn’t going to stop watching him because he was just jumping for joy. It really was unbelievable,” added Reylene Starego, ’s mother.

If being the hero Friday night put Starego at the top of the mountain, his entire life has been an uphill battle getting there. “When he came to us, he had been through 11 foster homes and he had had some difficulties. He had about six words to his vocabulary,” Reylene Starego said.

“He had kidney reflux; he had an asthmatic condition. Basically, it was a special needs adoption that we had gone through,” Ray Starego added.

Symptoms of autism include children performing repeated body movements. They often experience unusual distress when routines are changed, but those are the same traits that make a successful kicker. “Fifty times a day, that’s all he does. Just three steps back, one over and he hits the ball. That’s what he knows and that’s what he did,” coach Kurt Weiboldt said.

Starego agreed. As far as he’s concerned, practice makes perfect.

“I do the same thing over and over again. It helps me a lot, and I’m having the best day of my life,” he said.

Children with autism also have trouble with social interactions, so making friends isn’t easy, but the football field is different. It’s a safe haven.

“[ is] just the man. He’s always happy, always puts a smile on your face,” Brick High quarterback n Darcy said.

said he doesn’t think of himself as being different than his teammates. He said he just has a job to do. “I feel like I’m happy and calm and enjoying myself when I kick. [it’s] the time of my life,” he said.

The Green Dragons’ only two wins of the season have come since became the kicker. He’s perfect on kicks, including that game winner. Their next game is this Friday against Lacey High School.

http://newyork.cbslocal.com/2012/10/23/autistic-high-school-football-player-has-moment-for-the-ages-kicks-game-winning-field-goal/#.UIf0H0VQpvQ.email

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Rapper Example suffered from Asperger's syndrome

OK! Magazine Saturday 20 Oct 2012

EXAMPLE was diagnosed with a mild form of autism as a child.

The Changed the Way You Kiss Me hitmaker reveals doctors noticed he was struggling with behavioural difficulties as a kid and soon pinpointed it as Asperger's syndrome.

He tells The Guardian, "I was diagnosed with Asperger's when I was younger. I was amazing with numbers, I had a photographic memory, and I hated reading fiction, preferring books on nature and history. All symptoms of mild autism."

Example has continued to battle personal issues as an adult and has been undergoing counselling sessions to help him deal with his prior drug use and the pressures of fame.

He says, "I've been in therapy. The therapist told me he was used to dealing with egotistical males in the entertainment industry - blokes in the public eye who have got carried away with fame, alcoholism, drug abuse and affairs."

http://www.ok.co.uk/celebrity-news/view/55226/Rapper-Example-suffered-from-Asperger-s-syndrome/

The Long Battle to Rethink Mental Illness in Children

By SHIRLEY S. WANG

Photos by Spear for The Wall Street Journal

Since infancy, Max Brown, 11, has flown into a rage at the smallest of slights, such as being told 'no.' Holed up in windowless hotel conference rooms near Washington, D.C., scientists have been busy rewriting the bible of American mental illness.

It is the first revision of the nearly 1,000-page tome in 15 years, and one of the top priorities of the insular conclave is to rethink some children's disorders, particularly bipolar disorder. The fear is that too many treatable children are slipping between the cracks, either because of misdiagnosis or—more controversially—because they suffer from a disease that hasn't even been defined yet. His emotions change quickly throughout the day.

Pediatric bipolar illness is one of the most significant categories of psychiatric ailments in children, even though it came into existence as a diagnosis only in the mid-1990s. Hundreds of thousands of U.S. children are estimated to have been diagnosed with it. Many are heavily medicated. The process of adding or subtracting diseases from the Diagnostic and Statistical Manual of Mental

Disorders, the "DSM," can get contentious. In July, two committee members quit over disagreements about how to reclassify various disorders. Final decisions are expected this year.

At one of the closed-door meetings at the Hotel Palomar in Arlington in 2008 about a dozen psychiatry experts gathered to zero in on one sticky issue: Whether to define a new children's disease called Disruptive Mood Dysregulation Disorder—a condition characterized by children who are constantly irritable and can be explosive. This differs from bipolar disorder, which is characterized by periods of depression and "manic" episodes—extreme swings of happiness or irritability. "We can't 'do nothing,' " said, Zeanah, a committee member and Tulane University professor. He calls it "perhaps the most important child issue" in the revision of the massive manual.

Max loses his temper in a park, near Cincinnati, Ohio, where he lives.

The concern is that these kids are potentially being overmedicated with psychiatric drugs that cause severe side effects—including weight gain that increases diabetes risk—but which are ineffective for their condition.

Based on committee documents, conference presentations and interviews with dozens of experts involved in or familiar with the revision, The Wall Street Journal reconstructed the long-running process of defining a new disease.

Inclusion of a condition in the manual is often followed by increases in the use of medicines to treat it. New research in August showed a sevenfold increase in doctor visits for antipsychotic medications in children 13 and under, which treat bipolar disorder and others, between 1993 (the year before that disease entered the manual) and 2009.

Even the naming of ailments can ignite passions. When the proposed new disorder was announced, public criticism of its name was fierce. Initially it was dubbed Temper Dysregulation Disorder, "But when you say 'temper,'" people think temper tantrums, says Dr. Zeanah. "They think of their own toddler, and you're pathologizing everyone. TDD was such a fiasco."

One child who might benefit from new disease categories is Heidi Willoughby's 12-year-old daughter, whose emotions can careen quickly between giddiness and fury. "It's like walking around with an arm full of explosives," says Ms. Willoughby, of Boston, Mass. "You hope that you don't trip." Brown tells a similar story about her son, 11-year-old Max. Since infancy, Max has flown into a rage at the smallest of slights, such as being told "no." He sent one child to the hospital during a play session, and has drawn blood a few other times, says Ms. Brown, who lives in Cincinnati, Ohio. "In his baby book, I wrote 'wild baby,'" she says.

At age 4, Max was diagnosed with bipolar disorder. But several clinicians think that is wrong. He has never been treated successfully, says his mother, a 40-year-old sales rep. His mother, , comforts him.

Inclusion of a new disease in the DSM has potential to affect millions of patients and billions of health-care dollars. Some 30% or more of Americans are diagnosed with at least one mental illness in their lifetimes, and psychiatric drugs are among the most prescribed medicines in the U.S. Nearly $40 billion was spent last year on the top three types—antipsychotics, antidepressants and medication for attention-deficit, hyperactivity disorder—according to IMS Health.

More than that, the DSM, published by the American Psychiatric Association, serves as a road map to rapidly changing scientific views of mental health. For instance, only in 1980 did the manual elevate autism to the level of psychiatric disorders, and strike homosexuality from its disease list.

Pediatric bipolar disorder, the condition 11-year-old Max is diagnosed with, is a serious illness characterized by swings between depression and mania. Up to 3% of children are estimated to have it, according the National Institute of Mental Health.

Many children respond to treatment, but others struggle. Their behaviors may get them booted from mainstream classrooms. In extreme situations, such as with Max, they must move to a residential facility for care.

But some experts feel many children are misdiagnosed and in fact suffer from Disruptive Mood Dysregulation Disorder, the new, still-unofficial disease currently being debated for inclusion in the manual. Wrong diagnoses can lead to inappropriate drug treatment. There is no treatment regimen yet for DMDD.

Changing Diagnoses in the DSM

Take a look back over some of the language that has been used in the DSM to describe common mental-health diagnoses and how it has changed. "We want to be sure we're using [antipsychotics] in the right patients when they're needed," says Ellen Leibenluft, chief of the bipolar spectrum disorders section at the National Institute of Mental Health, who is involved in the revision process.

There is no way to know precisely how many children currently diagnosed with bipolar disorder might have instead have DMDD. However, one of Dr. Leibenluft's studies found that 60% or so of children who are likely candidates for the new diagnosis are currently diagnosed with bipolar disorder.

The revised manual, expected next year, could have far-reaching effects. Inclusion of a new disease means researchers can attract funding and patients can obtain insurance reimbursements. The Food and Drug Administration primarily approves drugs only for listed diseases or symptoms.

Created by a small group of clinicians in 1952, the manual was largely ignored by the wider medical field until 1980, when it was greatly expanded and formalized. The revision process relies on experts, mostly researchers, to comb through scientific papers and presentations looking to clarify or improve diagnoses.

Researchers aren't paid for their work. The APA pays for the book and has co-hosted several research conferences about the DSM with government partners and public-health organizations. There is no drug-company, insurer or hospital participation.

This scholarly process is sometimes at odds with the emotionally charged nature of what psychiatric labels mean to the public. For instance, a proposal to eliminate the category for Asperger's syndrome and instead subsume it under a broader umbrella term of autism disorders prompted protests from "Aspies" (people diagnosed with Asperger's) who identify themselves as distinct from people with autism. Some parents also protested, fearing their children might be denied services.

Groups like the Global and Regional Asperger Syndrome Partnership Inc. encouraged members to complain to the manual committee. And Aspies discussed on message boards whether they should start describing themselves as having "high-functioning autism."

"A Hifunctie?" one person suggested on the Aspies for Freedom website.

"What about haughty," quipped another.

Classifying mental illness is an imperfect science. The DSM task force defines mental illness as a condition that causes disruption in people's daily functioning. But setting a threshold for disruption is a judgment call.

It is a level of disability "that really necessitates intervention," says Kupfer, chairman of the DSM task force that oversees the process. "The problem is, just listing a series of symptoms is not sufficient to call it a disorder."

The current DSM revision began in 1999. For the first seven years, a steering committee fine-tuned a priority list by holding several research conferences.

Starting in 2006, 13 "work groups" of a dozen or so experts were established to review batches of new and existing conditions, overseen by an overarching task force of 29 members. For years, these groups have met in person or talked on the phone at least monthly, according to Dr. Kupfer, a psychiatry professor at the University of Pittsburgh.

Each expert must agree to limit their involvement with drug companies to $10,000 over the duration of the revision. About a third of the experts invited to join committees declined to do so for this reason, Dr. Kupfer says. The APA covers the cost of hotel and conference rooms.

When the "child and adolescent" work group first convened in early 2008, bipolar disorder was a top priority. "It would be impossible not to be aware that there's a major issue with the diagnosis of bipolar disorder," says Dr. Zeanah, the Tulane professor and group member.

At one of his group's first in-person meetings, the NIMH's Dr. Leibenluft, an expert on bipolar disorder in children, gave a 20-minute PowerPoint presentation with evidence for a potential new disease. She called it Severe Mood Dysregulation. She described a decade of studying children with severe mood problems that don't fit neatly into current illnesses. Thus began a cerebral process to decide what these kids might be suffering from.

The two main options: Create a new disease, or create a variant to an existing disorder. The discussions ran for years.

Members disagreed on how much evidence was needed to create a new disease. They debated whether the new ailment could be sufficiently distinguished from others. But work-group members didn't break into separate camps, they recall. Instead, they tended to play devils' advocate.

The group grappled for "a long time" with making the ailment a severe subtype of a current diagnosis, Oppositional Defiant Disorder, says Dr. Leibenluft. But ultimately, in 2010, they decided to recommend creation of a new illness instead. (A broader APA committee will make the final decision on that and all other recommendations later this year.)

Dr. Leibenluft, who works at the NIMH, described the research but declined to go into detail about committee discussions.

One of the more emotionally charged exchanges occurred months in. Once again, the group was sequestered in a hotel meeting room and having another lengthy chat about whether these explosive children should be tagged with a new disorder.

Dr. Leibenluft suggested that perhaps the right thing to do was to not make any changes and to drop the idea of a new illness. Suddenly, Dr. Zeanah spoke up, arguing with intensity that the issue was tremendously important to children's health and that to "do nothing" shouldn't be an option.

His reaction surprised some group members, who recall Dr. Zeanah as being soft-spoken and relatively quiet throughout the process. "I was never persuaded that a new disorder was unjustified, but I tried to listen fairly to contrary evidence," Dr. Zeanah said recently when asked about the meeting. He said he felt that doing nothing, or adding the disease to an existing disorder, wouldn't help the children.

In spring 2010, the panel's recommendation of a new disease was made public. In contrast to the intellectual ruminations inside the work group, public criticism was fierce, particularly against the proposed name, Temper Dysregulation Disorder.

Resko of the Balanced Mind Foundation, an advocacy group for kids with serious mental illness, said that though she didn't conduct a formal poll of her members, "Those that heard about it and voiced their opinion, hated it, across the board." One mother emailed Ms. Resko to say: "The use of the term 'temper' in the diagnosis connotes a bad personality," when what the child actually suffers is a "severe condition resulting from a dysfunction in the brain."

In response to the criticism, the group decided to change the name. After months of further deliberation, the deed was done and the name became "Disruptive Mood Dysregulation Disorder," or DMDD.

Many critics zeroed in on the very issue that consumed the group for so many years: Are there enough data to justify a new disease? "I don't think we solved the overdiagnosing and overprescribing of psychiatric drugs for children by inventing another category that may unintentionally catch even more children," says Elkins, president of the American Psychological Association's Society for Humanistic Psychology, who has criticized the manual-revision process.

Some advocacy groups voice measured support for creating a new illness. "The concern is that DMDD hasn't been studied well enough," says Ms. Resko. But "from a parent-advocacy perspective, we hope that its inclusion will encourage more research" into children with severe mood problems.

The latest challenge in the making of the new illness: Determining whether the definition is reliable enough to use in diagnosing actual patients. DMDD was one of dozens of disorders tested in "field trials" begun in 2010. The trials used the proposed criteria on real patients nationwide.

In May, early results indicated that the condition is relatively rare, and that clinicians don't always share strong agreement about which children have DMDD, according to work-group members. That could limit its clinical usefulness.

But for the time being, the new disease is expected to appear in the revised manual in some form—either as an official new illness, or as one that needs more research, Dr. Kupfer says. The final decision is expected in December.

Ms. Willoughby, the mother of the explosive 12-year-old girl, says her family has a good team of doctors, but "even with people so terrific, we still don't know if we have [the treatment] right." She says she and her husband are "open and flexible" to the idea of a new diagnosis if it will help their daughter. "None of it is a bloody science," Ms. Willoughby says.

Write to Shirley S. Wang at shirley.wang@...

A version of this article appeared October 19, 2012, on page A1 in the U.S. edition of The Wall Street Journal, with the headline: Mental Illness GetsA Rethink for Kids.

http://online.wsj.com/article/SB10000872396390444273704577633412579112188.html

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iPods as the Next-Generation Autism Aid

By Abrams

http://www.theatlantic.com/health/archive/2012/09/ipods-as-the-next-generation-autism-aid/262058/?emc=lm & m=693519 & l=6 & v=2824914

How apps designed to make all of our lives easier can be co-opted to help adults with autism thrive in the workplace.

The Americans with Disabilities Act mandates that employers make "reasonable accommodations" for adults with autism, specified as minor adjustments to the work environment that won't cause undue hardship to the employer. For , something as reasonable as an iPod, which costs $190 (a job coach in the state of Virginia is paid $50 per hour), turned him into a valuable asset. He didn't even need to download any special apps -- the clock and to-do list functions that come standard with the iPod, after minor adaptations were made by a trained occupational therapist, were all he needed.

published in the Journal of Vocational Rehabilitation describes how, as a 21-year-old with autism, he required the near-constant supervision of a job coach to prompt him to rotate between his different duties and to help him remember the steps involved in each task.

As Steve Jobs himself said, by pushing past the initial complexities of a problem "you can oftentimes arrive at some very elegant and simple solutions." In 's case, the solution was Apple's iPod Touch, programmed by an occupational therapist to guide him through the day. The iPod contained specific instructions that could reference when he forgot what to do, and would alert him when it was time to switch to a different task. Within a week, the two were synched.

The job coach stepped back, and a year later continues to excel at his job. Having the iPod as an interactive reference allows him to function more or less independently, and to feel more at ease in the workplace. His manager noted that he no longer spins in circles while humming or stamps his feet in the corner -- disruptive behaviors that he used to turn to in order to relieve his anxiety and that had been causing management to second-guess their decision to hire him. The iPod even reminds that it needs to be charged each night.

Despite the advantages they can bring to a workplace, from basic productivity to, in some cases, increased ability to focus on complex and repetitive tasks, the common characteristics of autism spectrum disorder (ASD), like difficulty communicating and functioning in social situations and a reliance on routine, can make even menial labor difficult for people with the disorder, who of all disability groups are least likely to attain and keep employment. 's case shows that technology already developed and made accessible can provide part of the solution.

Once a job coach has programmed in the basics and helped them learn how to use it, the people presented in the case studies were able to function more independently. People with autism tend to respond well to computers, in part because of their predictability. "Symbiosis between man and machine in that population is an amazing opportunity for more focused and individual support," said Gentry. Such was the case with Lily, another young adult profiled by Gentry:...[Lily] required direct verbal support to stay on task, to switch tasks, and to know which alternating schedule to follow each day. Because Lily takes pride in her work skills, she often became frustrated when her supervisor or job coach provided these task cues, resorting to behaviors that included throwing soft drinks, stomping, crying and phoning her mother at home. Unforeseen changes in the workday schedule also caused outbursts. These challenges made independent job performance problematic.

Having her task cues delivered by an iPod instead of a supervisor allowed Lily to both feel and be more independent. This was emphasized by a two-week period after she lost her iPod, during which she reverted to old behaviors and required an average of six hours a week of direct prompting from her job coach. Once she got a new device, the job coached logged only two hours per week, most of which only involved indirect monitoring.

Related Stor: Getting the Most Out of Working with a Learning Disability

Other apps not specific to helping people with autism can also, with a bit of creativity, be repurposed Storykit, for example, was used to create talking picture books for an illiterate worker that could guide her through her tasks and provide positive reinforcement. Basic things like playing games during long commutes and listening to podcasts as a calming strategy -- as many of us do -- took on a special significance for these individuals. What these case studies show is that while our iPods and iPhones are capable of doing some prety incredible things, there may still be a lot that we're overlooking. It raises the question of what else is already at our disposal that can be re-imagined as a potential tool for people with disabilities.

there may still be a lot that we're overlooking. It raises the question of what else is already at our disposal that can be re-imagined as a potential tool for people with disabilities.

Gentry emphasizes that the device itself is not the solution -- it takes skilled interventions to build a specialized suite of apps that will work for the unique circumstances of each individual.

Workplaces, too, need to be prepared to welcome employees with ASD. "That population is in real, real need of some kind of intervention or support to help them get into the workforce and succeed," said Gentry, "and at the same time we need to have the employers be a little bit more courageous, and be willing to try someone who maybe seems a little different. And that's the hard part."

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Stepbrother charged in death of autistic man who was tortured

SANDY CULLEN and ED TRELEVEN | Wisconsin State Journal

A developmentally disabled Mazomanie man missing for four months was tortured, killed, frozen, then buried on state land, Dane County Sheriff Dave Mahoney said Tuesday.

The body of Graville, 27, who had Asperger's syndrome, a form of autism, was found Monday afternoon in a makeshift grave near Lone Rock in Sauk County after authorities were led to the burial site, Mahoney said.

Graville's stepbrother, Vogelsberg, 28, was charged with first-degree intentional homicide and hiding a corpse. He is in custody in Washington state, where his wife, who is in the Army, is stationed at Joint Base -McChord.

An official ruling on the cause and manner of death is pending, the Dane County Medical Examiner's Office said after a daylong autopsy Tuesday.

According to a criminal complaint, Graville died after a beating by Vogelsberg on June 30 in a home at 325 W. Division St. in Mazomanie owned by McCumber, where all three were living. He was found dead the next morning by McCumber and kept in a freezer for four days before he was buried.

Sheriff's officials said Graville suffered significant physical, mental and emotional abuse by Vogelsberg, whom Graville idolized, and McCumber since he began living with them in March or April. Prior to that, Graville had been living with his stepmother in Fort Atkinson.

After Graville's death, Mahoney said, his stepmother, Robar, 49, used Graville's identity to access his bank and public assistance accounts. Robar is in Dane County Jail on tentative charges of felony theft, identity theft and hiding a corpse.

McCumber, 28, also is jailed on a tentative charge of hiding a corpse. He led authorities to the burial site about 1:50 a.m. Sunday, the sheriff's office said.

"I'm still numb," Graville's mother, Vicki Graville, 48, of Madison, said Tuesday. She reported her son missing to Madison police on Sept. 14.

Graville's stepgrandfather, Robar, also had reported Graville missing to Monroe police on July 23.

Vicki Graville said she told authorities from the start that she feared her son was dead and that Vogelsberg was involved because of "the way treated him."

She declined to elaborate, but said she and others had tried to intervene to keep her son away from Vogelsberg. "He'd give anybody the shirt off his back," she said, describing her son as "loving" and "kind," and adding, "That is why people took advantage of him. ... He was like a little kid." Her son's disability impaired his motor skills and decision-making ability, she said, recalling how as a grade school student he would take off his coat and let other children pelt him with snow and ice balls and laugh at him because he liked the attention.

Disability advocates called news of Graville's death "tragic."

"This is a wake-up call for the community to watch out for one another," said nah , executive director of the Autism Society of south-central Wisconsin. Sheriff: 'A living hell' Mahoney said investigators got a break in the case on Saturday while following up a financial transaction by Robar using Graville's identity. The complaint states that Robar was using Graville's Quest card, used by people on public assistance to buy food. "In 33 years, 25 as a detective, I find it difficult to find another case where an individual took advantage of a developmentally disabled male for their own entertainment," a teary Mahoney said at a press conference Tuesday. " lived a living hell."

Mahoney declined to elaborate on the abuse, citing the ongoing investigation.

According to the complaint against Vogelsberg:

McCumber told police that on June 30, as Vogelsberg and his family were preparing to go to Missouri for the Army basic training graduation of Vogelsberg's wife, Remus, Vogelsberg beat Graville in their bathroom.

McCumber said the beating was what Vogelsberg called "waterboarding." He said Vogelsberg was convinced that Graville was poisoning Vogelsberg's children.

"I heard Jeff yelling, 'Get up Matt, get up Matt,'" McCumber said. "I heard water running and I heard Matt falling down in the bathroom."

"It was one of the worst beatings I heard Matt take," he said. "I heard Matt bouncing around in the bathroom. I heard saying knock it off, leave him alone."

In the past, he said, Vogelsberg would beat Graville and shoot him repeatedly with a BB gun.

McCumber said he woke up about 9 a.m. on July 1 and found Graville dead on the couch, with pill bottles and pills scattered around on the table nearby. McCumber said he called Vogelsberg on his cellphone, telling him that Graville was dead.

In subsequent calls, Vogelsberg told McCumber to put Graville's body in a chest freezer in the garage and said he would kill McCumber if he told anyone about it.

Reported missing, already dead Four days later, Vogelsberg returned, then buried Graville's body near Lone Rock, about 20 miles west of Mazomanie in Sauk County, the complaint states. McCumber told investigators he did what Vogelsberg told him to because Vogelsberg had a gun with him when they dug the grave.

On the drive back to Mazomanie, McCumber said, Vogelsberg told him that they were now "best friends."

McCumber initially told police that he had last seen Graville alive on June 30 with Robar and Vogelsberg.

Mahoney said Tuesday that Graville had gone to Mazomanie to live with his stepbrother, whom Graville had known since he was 4 years old and loved.

"'s life was filled with torture, physical abuse and subsequently death," Mahoney said.

Contact Ed Treleven at or etreleven@.... Contact Sandy Cullen at or scullen@....

Read more: http://host.madison.com/news/local/crime_and_courts/stepbrother-charged-in-death-of-autistic-man-who-was-tortured/article_e0a149ce-283b-11e2-a94d-001a4bcf887a.html#ixzz2BYmhPn00

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Sensory Overload (Interacting with Autism Project)

from Jiron Plus © 2012

Some people with autism have difficulty processing intense, multiple sensory experiences at once. This animation gives the viewer a glimpse into sensory overload, and how often our sensory experiences intertwine in everyday life.

http://vimeo.com/52193530

We Can Now Add Forced Sweating To The Faux Autism Treatment List

By Willingham, Forbes

What’s the latest “science” they’re trying to sell you to treat autism? Infrared sauna therapy. Yep, you read that right. According to a recent wire story, a company that peddles saunas has has teamed up with Generation Rescue- McCarthy’s Generation Rescue–to “bring awareness to the therapeutic benefits of infrared saunas to the autism community.” The company is kindly offering “half-size” saunas to accommodate sweating out the half-pint autistic child in your life. From what I can tell, these things are not cheap. Quote the article: Studies have shown that sauna therapy is a valuable clinical tool for treating autoimmune, toxicant-induced and other chronic health problems. Far infrared sauna therapy offers a component of depuration and offers a variety of health benefits to regular users including the removal of toxins in the body leading to increased health and brain function.

Odd that. The three articles they cite to support their assertions show no such thing. The first paper they offer isn’t a study, it’s a review. That means it contains no original data. It appears to be a general discussion of the use of saunas, a la Scandinavians, for treating chronic obstructive pulmonary disease, pain, and “addiction.” A second paper they cite is also a review of other studies and thus also contains no original data. Worth noting, this review paper says the following about saunas: Despite much attention given to saunas with heaters emitting at specific electromagnetic frequencies, research to date suggests that there is no difference in toxicant excretion rates between perspiration that occurs through infrared sauna, dry or wet regular saunas, or exercise.

In other words, according to their own citation, Generation Rescue has teamed up with this sauna company to make you “aware” of something with effects you could achieve … by simply exercising.

Their third and final citation is this one. It does contain original data, but not about the effectiveness of saunas for autism. No. It’s a survey of naturopaths about the techniques they use for “detoxification therapies.” To add to this featherweight accumulation of evidenc,on its Website, the sauna company offers up the expert opinion of one Dutch physician … who died in 1738. His apparent legacy to later generations was the advice that keeping your head cool and your feet warm would keep the doctor away. Daily apples, cold heads, warm feet. Got it. Infrared sauna therapy might have some benefit for some health conditions (although I’d not recommend trying it for the autoimmune disease known as multiple sclerosis). But nothing in the lone study or in the two reviews cited specifically supports effectiveness of infrared sauna for autism. That might be in part because there’s not an evidence base for asserting that autism is a condition that necessitates “detoxification,” although there certainly is a cottage industry built up around selling this idea–and treatments for it–to concerned families. And it’s not the first time McCarthy and Generation Rescue have been associated with such interventions. We’ve had hyperbaric oxygen therapy, chelation, Lupron (essentially chemical castration), and industrial strength bleach used against children with autism in pursuit of this heavy metal phantom. Is it any surprise that if it’s OK to subject children to confinement in HBOT chambers injections, and bleach enemas, forced sweating could so easily be added to the list?

http://www.forbes.com/sites/emilywillingham/2012/11/05/we-can-now-add-forced-sweating-to-the-faux-autism-treatment-list/

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Study finds no link between autism and gut microbes

Study finds no link between autism and gut microbes

via SFARI News by Anthes on 11/5/12

Bacterial controversy: Some studies have found certain bacterial species in children with autism and not in controls, but a new study says there are no differences between the groups.

Contradicting a popular hypothesis in autism, a new study from Australia has found no connection between autism and bacteria in the gut. The analysis, published 20 September in the journal Autism Research, reports that the gastrointestinal (GI) systems of children with autism harbor the same bacteria as those of their typically developing siblings1.

“Our conclusion was there’s no single organism that we can pinpoint as being always involved in autism,” says Enzo Palombo, associate professor of microbiology at the Swinburne University of Technology in Melbourne, Australia, who is one of the investigators.

Based on 51 children with autism and 53 unaffected siblings, the study is larger than most studies of the microbiome — the collection of microbes in the body — in children with autism. Because siblings share genes and their environment, this approach reduces ‘noise’ in the data from factors unrelated to autism, the researchers say.

However, critics argue that because children in the same family tend to have similar microbiomes, comparing children who have autism with their unaffected siblings may also make it more difficult to pick out subtle abnormalities associated with autism.

For years, scientists have suspected that something is amiss in the guts of children with autism. Multiple studies have shown, for instance, that these children suffer from GI problems at rates far higher than other children do2 3 4.

Analysis of gut bacteria in children with the disorder has revealed some provocative findings. For instance, a 2005 study found that children on the autism spectrum have elevated levels of Clostridia, a class of bacteria that can produce neurotoxins, in their guts5. And in a study this year, researchers found a class of bacteria known as Sutterella in children who have both autism and GI problems, but not in typically developing controls.

Some researchers have gone so far as to suggest that these atypical microbial populations may actively contribute to autism symptoms. For example, research last year showed that the fatty acids produced by gut bacteria can alter the brain and behavior6 7.

Murky link:

That’s a controversial proposition, especially because the connection between autism and gut microbes remains murky. So far, studies have been small and their results inconsistent, implicating different kinds of bacteria.

In the new study, the researchers sequenced DNA extracted from the stool of 51 children with autism and 53 of their unaffected siblings, all between the ages of 2 and 12. The researchers then matched the sequences against a database of bacterial genomes to identify the microbes in each sample.

There are no significant differences in the types of bacteria or in their levels between children with autism and their typically developing siblings, the researchers found. Nor did they find differences between the gut microbes of children with autism who have GI symptoms and those who do not, or between children with severe forms of autism and those with mild forms of the disorder.

“We are showing that the link between specific bacteria in the gut and autistic symptoms and behavior is not definite,” says Palombo.

Still, other researchers say it’s too early to reject the idea that intestinal bacteria play a role in autism.

“In general, I think it’s a well-run study,” says Sydney Finegold, emeritus professor of medicine at the University of California, Los Angeles. Finegold compliments the Australian researchers in particular for their large sample size, and for including children both with and without GI problems. But, he adds, “I disagree with their conclusion that there’s no relationship between intestinal bacteria and GI dysfunction and autism.”

For one thing, Finegold says, the results of the study may be confounded by antibiotic use. Palombo and his colleagues excluded children from their study who had taken antibiotics in the previous 15 days, but Finegold says he believes that that criterion is not stringent enough.

“We know that the impact of antibiotics on intestinal bacteria lasts for months, and some would say for years,” he says. He says these studies should preferably exclude children who have taken antibiotics anytime in the previous several months.

For his part, Palombo says, “I agree that a longer abstinence period would have been ideal, but we may not have had as many study participants.”

Subtle differences:

Palombo agrees that it’s too early to rule out a connection between intestinal bacteria and autism. A handful of the children with autism have various bacterial abnormalities, such as an elevated level of one species or another, he says, indicating that a subset of children with the disorder may show differences.

Some experts say comparing the gut microbes of children who have autism with those of their unaffected siblings, rather than with unrelated controls, may make it more difficult to detect subtle differences.

“Autism is a complex etiology,” says Lozupone, a postdoctoral fellow in Rob Knight’s lab at the University of Colorado at Boulder. “There’s a genetic basis to it and there’s an environmental basis to it.”

Siblings share many genes and environmental exposures, would be expected to have similar microbiomes. In fact, some research has shown that whereas the gut microbes of children with autism are significantly different from those of unrelated controls, siblings have microbial populations that fall somewhere in the middle5 8.

The Australian team next plans to look for differences in viral populations among these groups, as well as to study whether the bacteria in children with autism produce different metabolites than those in typically developing children.

Overall, the conflicting results of these studies may result from the fact that there’s not yet a single standard way to conduct this research, Lozupone says.

In addition to using different kinds of control populations, researchers can collect microbial DNA from fecal samples or, occasionally, directly biopsy the intestines. Some scientists compare the presence of specific species or genera, and others look for differences in families or classes of bacteria, which may obscure subtle differences at the finer, species level.

“It’s really hard to interpret microbiome results,” Lozupone says. “It’s a new field — we’re still trying to figure out how to analyze data.”

References:

1: Gondalia S.V. et al. Autism Res. Epub ahead of print (2012) PubMed

2: Valicenti-McDermott M. et al. J. Dev. Behav. Pediatr. 27, S128-S136 (2006) PubMed

3: Gilger M.A. and C.A. Redel Pediatrics 124, 796-798 (2009) PubMed

4: Horvath K. and J.A. Perman Curr. Opin. Pediatr. 14, 583-587 (2002) PubMed

5: Parracho H.M. et al. J. Med. Microbiol. 54, 987-991 (2005) PubMed

6: MacFabe D.F. et al. Behav. Brain Res. 176, 149-169 (2007) PubMed

7: Shultz S.R. et al. Neuropharmacology 54, 901-911 (2008) PubMed

8: Finegold S.M. et al. Anaerobe 16, 444-453 (2010) PubMed

http://sfari.org/news-and-opinion/news/study-finds-no-link-between-autism-and-gut-microbes

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GRASP

The Global and Regional Asperger Syndrome Partnership, Inc.

666 Broadway, Suite 825

New York, NY 10012

p + f = 1.

www.grasp.org

Help GRASP make a difference. Donate now by clicking the link below:http://www.nycharities.org/donate/charitydonate.asp?ID=2223

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