Autism Spectrum Disorders

An Autism Job Board For Special Needs Job Seekers

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Autistic Teen Inspires Mom To Launch Online Job Board For Applicants With Special Needs

by Joseph Erbentraut, via The Huffington Post

When Atlanta-based attorney Shannon Nash and her husband first received the news that their 18-month-old son, Jason, was autistic, they felt overwhelmed and devastated.

The outlook for Jason painted by doctors and therapists alike was, Nash says, “a very bleak outcome in terms of what his future could be. Very, very bleak.” Her expectations, she says, were set very low when it came to what her son would be able to accomplish.

“Thank God they were wrong and that they just didn’t know,” she told The Huffington Post.

Now, Nash’s son is 16 years old. Though he will likely need to continue speech therapy for the rest of his life and has other struggles, he has made a lot of progress. His receptive language, she says, is excellent and she is currently considering sending him to a Minnesota-based program where he could earn an associate degree that will be of good use when he enters the workforce as an adult. It’s something she never would have anticipated when they first got the diagnosis.

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Shannon Nash with her son Jason, who helped inspire her to launch Autism Job Board, a new website for job seekers with autism spectrum disorder.

The time after high school, however, is when the obstacles typically heighten for youth with autism spectrum disorders (ASDs). Though the Centers for Disease Control and Prevention estimates that one in 68 U.S. children now have ASDs — a marked increase from the time Jason was diagnosed — employment opportunities for those children when they become adults (an estimated 500,000 will do so within the next decade in the U.S.) are frustratingly few.

According to a 2012 study from Washington University in St. Louis, just 55 percent of young adults with autism had a job over the course of the six years immediately following high school. And the chance of being unemployed or not continuing their education is more than 50 percent greater for young adults with autism compared to their peers with other disabilities. Their combined unemployment and underemployment rate is estimated at 90 percent nationwide.

Alarmed by those statistics, Nash began researching employment opportunities for youth with autism several years ago. Though she found helpful resources from advocacy groups like Autism Speaks on resume-writing and other job-seeking skills, what she couldn’t find was anything specifically bringing together applicants with autism and the employers willing and able to hire them.

“I thought surely my search terms were off or there was something wrong with me, but the more I looked, I found very little,” Nash told HuffPost.

Tired of hunting down something she was convinced already should have existed, she decided to do it herself. A serendipitous run-in with an employee of jobBoardASP — a company that specializes in building job board websites — helped her get a handle on the backend of such a website, while she focused on making connections with other organizations working on the issue. That work culminated recently in the website,Autism Job Board, being launched at the AutismOne conference in Rosemont, Illinois.

In addition to searchable job postings, the website will also feature information for employers on best practices for hiring and employing workers with ASDs, as well as tips and help for applicants. Registration is free.

The response thus far, Nash says, has been positive, though employers have been slow to take to the site. So far, just one job posting — for prep cook positions at a restaurant in Denver — can be found. Nash is currently focusing on ramping up efforts to urge more people — employers and job seekers alike — to sign up.

The effort is very personal for Nash, who has seen her son flourish as he’s volunteered with the veterinarian’s office where they take their family dog. Not long after Nash first asked the office if Jason could work there three or four hours a week, they were asking her to stay home and send her son on his own — for fear that her presence could actually hinder his progress.

“He loves it and I see a future for him there,” she said.

Nash hopes many others like her son will also be given the opportunity to excel in workplaces, gaining valuable experience they can build on as they get older. Though she believes there is a misconception among some employers that hiring a worker with autism will be more risk and liability than it is worth, she’s found the opposite to be true.

An organization called Actors for Autism is behind an innovative program based in Glendale, California, the Advanced Media Vocational Academy. The program offers training in several areas of the entertainment industry, including some areas that Nash says workers with autism are particularly well-suited for, such as film editing — a time-consuming, solitary process that many with autism might enjoy. The program is also involved in job placement. Other autism career programs in Plano, Texas, and Chicago offer similar training catering to other industries.

Beyond pushing for higher registration on the website, Nash hopes the Autism Job Board will eventually offer job fairs held throughout the country in order to bring together job seekers and local businesses with positions to fill in person. She is optimistic the employment outlook will improve for people like her son — though it may take some time.

“We want to educate people and make them understand this is a workforce to really get behind,” Nash said, “and I can tell you it’s going to happen because it’s too many kids aging into adulthood.”

 

http://www.huffingtonpost.com/2014/06/02/autism-job-board_n_5418880.html

Parents And Caregivers: We Need Your Input!

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Dear Parents, Caregivers and readers of Beyond Autism Awareness, please take a very brief (5-10min) survey about your views regarding your child’s Autism diagnosis, how it has impacted you and some of the methods you employ to cope.  This is a blind survey but does include a demographic section; feel free to modify dates, etc as you wish.  Understanding the impact that Autism has on you as a parent or caregiver is valuable and needs to be quantified.  Thank you in advance -Ed

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Scott Brown is in his senior year at SUNY Purchase studying Psychology. His area of interest is Autism and for his senior project he created a survey along with his faculty mentor (see description below). If you have a child diagnosed with Autism, Asperger’s, PDD-NOS, or another diagnosis on the Autism Spectrum, would you please take the time to fill out this survey.  Scott hopes to present his findings at a senior presentation in addition to graduating with his Bachelor’s degree on May 16!  Please forward to any other parents, guardians or caregivers you may know that would be willing to participate.   It is much appreciated.

The following link is for a research study investigating Coping Strategies and Advocacy in parents of children with Autism.  The survey will take about 10 minutes and it is our hope that the data will contribute to the research on Adaptive Coping Strategies for parents of children with Autism. Upon completion of the survey, please feel free to forward the link to any other parent who may be willing to fill out the survey.  Thank you for your participation.
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                      http://www.psychsurveys.org/sb/coping

Building A Dream, One Lego Brick At A Time

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11 YEAR OLD BOY WITH AUTISM IS ASKING LEGO TO HELP HIM BE EVEN MORE AWESOME


Brynjar Karl is an 11-year-old Icelandic boy with autism who has two dreams — and they both involve Lego.

“It’s kind of tough being autistic … I’m learning every day to behave like other ‘normal’ kids. Whatever normal means,” he says in the video above. “I’m still trying to figure that one out. But also, I’m artistic … and creative.”

With the help of his mom, Brynjar used that creativity to make this charming video plea directed at the people at Lego. He enthusiastically expresses his passion for the building bricks, and asks for an invitation to Legoland in Denmark.

Brynjar also politely asks Lego to provide him with enough Lego bricks to build his dream masterpiece — the Titanic. The up-and-coming engineer and artistic master knows everything about how to recreate the ship, down to the very last measurement.

He concludes the cute video by saying, “Please be so kind to help me make this, my dream, come true.”

We’re rooting for you, Brynjar!

Could “Intense World Theory” Answer Many Of Autism’s Questions?

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The boy whose brain could unlock autism

Autism changed Henry Markram’s family. Now his Intense World theory could transform our understanding of the condition.

SOMETHING WAS WRONG with Kai Markram. At five days old, he seemed like an unusually alert baby, picking his head up and looking around long before his sisters had done. By the time he could walk, he was always in motion and required constant attention just to ensure his safety.

“He was super active, batteries running nonstop,” says his sister, Kali. And it wasn’t just boyish energy: When his parents tried to set limits, there were tantrums—not just the usual kicking and screaming, but biting and spitting, with a disproportionate and uncontrollable ferocity; and not just at age two, but at three, four, five and beyond. Kai was also socially odd: Sometimes he was withdrawn, but at other times he would dash up to strangers and hug them.

Things only got more bizarre over time. No one in the Markram family can forget the 1999 trip to India, when they joined a crowd gathered around a snake charmer. Without warning, Kai, who was five at the time, darted out and tapped the deadly cobra on its head.

Coping with such a child would be difficult for any parent, but it was especially frustrating for his father, one of the world’s leading neuroscientists. Henry Markram is the man behind Europe’s $1.3 billion Human Brain Project, a gargantuan research endeavor to build a supercomputer model of the brain. Markram knows as much about the inner workings of our brains as anyone on the planet, yet he felt powerless to tackle Kai’s problems.

“As a father and a neuroscientist, you realize that you just don’t know what to do,” he says. In fact, Kai’s behavior—which was eventually diagnosed as autism—has transformed his father’s career, and helped him build a radical new theory of autism: one that upends the conventional wisdom. And, ironically, his sideline may pay off long before his brain model is even completed.


IMAGINE BEING BORN into a world of bewildering, inescapable sensory overload, like a visitor from a much darker, calmer, quieter planet. Your mother’s eyes: a strobe light. Your father’s voice: a growling jackhammer. That cute little onesie everyone thinks is so soft? Sandpaper with diamond grit. And what about all that cooing and affection? A barrage of chaotic, indecipherable input, a cacophony of raw, unfilterable data.


Just to survive, you’d need to be excellent at detecting any pattern you could find in the frightful and oppressive noise. To stay sane, you’d have to control as much as possible, developing a rigid focus on detail, routine and repetition. Systems in which specific inputs produce predictable outputs would be far more attractive than human beings, with their mystifying and inconsistent demands and their haphazard behavior.

This, Markram and his wife, Kamila, argue, is what it’s like to be autistic.

They call it the “intense world” syndrome.

The behavior that results is not due to cognitive deficits—the prevailing view in autism research circles today—but the opposite, they say. Rather than being oblivious, autistic people take in too much and learn too fast. While they may appear bereft of emotion, the Markrams insist they are actually overwhelmed not only by their own emotions, but by the emotions of others.

Consequently, the brain architecture of autism is not just defined by its weaknesses, but also by its inherent strengths. The developmental disorder now believed to affect around 1 percent of the population is not characterized by lack of empathy, the Markrams claim. Social difficulties and odd behavior result from trying to cope with a world that’s just too much.

After years of research, the couple came up with their label for the theory during a visit to the remote area where Henry Markram was born, in the South African part of the Kalahari desert. He says “intense world” was Kamila’s phrase; she says she can’t recall who hit upon it. But he remembers sitting in the rust-colored dunes, watching the unusual swaying yellow grasses while contemplating what it must be like to be inescapably flooded by sensation and emotion.

That, he thought, is what Kai experiences. The more he investigated the idea of autism not as a deficit of memory, emotion and sensation, but an excess, the more he realized how much he himself had in common with his seemingly alien son.


HENRY MARKRAM IS TALL, with intense blue eyes, sandy hair and the air of unmistakable authority that goes with the job of running a large, ambitious, well-funded research project. It’s hard to see what he might have in common with a troubled, autistic child. He rises most days at 4 a.m. and works for a few hours in his family’s spacious apartment in Lausanne before heading to the institute, where the Human Brain Project is based. “He sleeps about four or five hours,” says Kamila. “That’s perfect for him.”

As a small child, Markram says, he “wanted to know everything.” But his first few years of high school were mostly spent “at the bottom of the F class.” A Latin teacher inspired him to pay more attention to his studies, and when a beloved uncle became profoundly depressed and died young—he was only in his 30s, but “just went downhill and gave up”—Markram turned a corner. He’d recently been given an assignment about brain chemistry, which got him thinking. “If chemicals and the structure of the brain can change and then I change, who am I? It’s a profound question. So I went to medical school and wanted to become a psychiatrist.”

Markram attended the University of Cape Town, but in his fourth year of medical school, he took a fellowship in Israel. “It was like heaven,” he says, “It was all the toys that I ever could dream of to investigate the brain.” He never returned to med school, and married his first wife, Anat, an Israeli, when he was 26. Soon, they had their first daughter, Linoy, now 24, then a second, Kali, now 23. Kai came four years afterwards.

During graduate research at the Weizmann Institute in Israel, Markram made his first important discovery, elucidating a key relationship between two neurotransmitters involved in learning, acetylcholine and glutamate. The work was important and impressive—especially so early in a scientist’s career—but it was what he did next that really made his name.

During a postdoc with Nobel laureate Bert Sakmann at Germany’s Max Planck Institute, Markram showed how brain cells that “fire together, wire together.” That had been a basic tenet of neuroscience since the 1940s—but no one had been able to figure out how the process actually worked.


By studying the precise timing of electrical signaling between neurons, Markram demonstrated that firing in specific patterns increases the strength of the synapses linking cells, while missing the beat weakens them. This simple mechanism allows the brain to learn, forging connections both literally and figuratively between various experiences and sensations—and between cause and effect.


Measuring these fine temporal distinctions was also a technical triumph. Sakmann won his 1991 Nobel for developing the required “patch clamp” technique, which measures the tiny changes in electrical activity inside nerve cells. To patch just one neuron, you first harvest a sliver of brain, about 1/3 of a millimeter thick and containing around 6 million neurons, typically from a freshly guillotined rat.

To keep the tissue alive, you bubble it in oxygen, and bathe the slice of brain in a laboratory substitute for cerebrospinal fluid. Under a microscope, using a minuscule glass pipette, you carefully pierce a single cell. The technique is similar to injecting a sperm into an egg for in vitro fertilization—except that neurons are hundreds of times smaller than eggs.

It requires steady hands and exquisite attention to detail. Markram’s ultimate innovation was to build a machine that could study 12 such carefully prepared cells simultaneously, measuring their electrical and chemical interactions. Researchers who have done it say you can sometimes go a whole day without getting one right—but Markram became a master.

Still, there was a problem. He seemed to go from one career peak to another—a Fulbright at the National Institutes of Health, tenure at Weizmann, publication in the most prestigious journals—but at the same time it was becoming clear that something was not right in his youngest child’s head. He studied the brain all day, but couldn’t figure out how to help Kai learn and cope. As he told a New York Times reporter earlier this year, “You know how powerless you feel. You have this child with autism and you, even as a neuroscientist, really don’t know what to do.”


AT FIRST, MARKRAM THOUGHT Kai had attention deficit/ hyperactivity disorder (ADHD): Once Kai could move, he never wanted to be still. “He was running around, very difficult to control,” Markram says. As Kai grew, however, he began melting down frequently, often for no apparent reason. “He became more particular, and he started to become less hyperactive but more behaviorally difficult,” Markram says. “Situations were very unpredictable. He would have tantrums. He would be very resistant to learning and to any kind of instruction.”

Preventing Kai from harming himself by running into the street or following other capricious impulses was a constant challenge. Even just trying to go to the movies became an ordeal: Kai would refuse to enter the cinema or hold his hands tightly over his ears.

However, Kai also loved to hug people, even strangers, which is one reason it took years to get a diagnosis. That warmth made many experts rule out autism. Only after multiple evaluations was Kai finally diagnosed with Asperger syndrome, a type of autism that includes social difficulties and repetitive behaviors, but not lack of speech or profound intellectual disability.

“We went all over the world and had him tested, and everybody had a different interpretation,” Markram says. As a scientist who prizes rigor, this infuriated him. He’d left medical school to pursue neuroscience because he disliked psychiatry’s vagueness. “I was very disappointed in how psychiatry operates,” he says.

Over time, trying to understand Kai became Markram’s obsession.

It drove what he calls his “impatience” to model the brain: He felt neuroscience was too piecemeal and could not progress without bringing more data together. “I wasn’t satisfied with understanding fragments of things in the brain; we have to understand everything,” he says. “Every molecule, every gene, every cell. You can’t leave anything out.”

This impatience also made him decide to study autism, beginning by reading every study and book he could get his hands on. At the time, in the 1990s, the condition was getting increased attention. The diagnosis had only been introduced into the psychiatric bible, then the DSM III, in 1980. The 1988 Dustin Hoffman film Rain Man, about an autistic savant, brought the idea that autism was both a disability and a source of quirky intelligence into the popular imagination.

The dark days of the mid–20th century, when autism was thought to be caused by unloving “refrigerator mothers” who icily rejected their infants, were long past. However, while experts now agree that the condition is neurological, its causes remain unknown.

The most prominent theory suggests that autism results from problems with the brain’s social regions, which results in a deficit of empathy. This “theory of mind” concept was developed by Uta Frith, Alan Leslie, and Simon Baron-Cohen in the 1980s. They found that autistic children are late to develop the ability to distinguish between what they know themselves and what others know—something that other children learn early on.

In a now famous experiment, children watched two puppets, “Sally” and “Anne.” Sally has a marble, which she places in a basket and then leaves. While she’s gone, Anne moves Sally’s marble into a box. By age four or five, normal children can predict that Sally will look for the marble in the basket first because she doesn’t know that Anne moved it. But until they are much older, most autistic children say that Sally will look in the box because they know it’s there. While typical children automatically adopt Sally’s point of view and know she was out of the room when Anne hid the marble, autistic children have much more difficulty thinking this way.


The researchers linked this “mind blindness”—a failure of perspective-taking—to their observation that autistic children don’t engage in make-believe. Instead of pretending together, autistic children focus on objects or systems—spinning tops, arranging blocks, memorizing symbols, or becoming obsessively involved with mechanical items like trains and computers.


This apparent social indifference was viewed as central to the condition. Unfortunately, the theory also seemed to imply that autistic people are uncaring because they don’t easily recognize that other people exist as intentional agents who can be loved, thwarted or hurt. But while the Sally-Anne experiment shows that autistic people have difficulty knowing that other people have different perspectives—what researchers call cognitive empathy or “theory of mind”—it doesn’t show that they don’t care when someone is hurt or feeling pain, whether emotional or physical. In terms of caring—technically called affective empathy—autistic people aren’t necessarily impaired.

Sadly, however, the two different kinds of empathy are combined in one English word. And so, since the 1980s, this idea that autistic people “lack empathy” has taken hold.

“When we looked at the autism field we couldn’t believe it,” Markram says. “Everybody was looking at it as if they have no empathy, no theory of mind. And actually Kai, as awkward as he was, saw through you. He had a much deeper understanding of what really was your intention.” And he wanted social contact.

The obvious thought was: Maybe Kai’s not really autistic? But by the time Markram was fully up to speed in the literature, he was convinced that Kai had been correctly diagnosed. He’d learned enough to know that the rest of his son’s behavior was too classically autistic to be dismissed as a misdiagnosis, and there was no alternative condition that explained as much of his behavior and tendencies. And accounts by unquestionably autistic people, like bestselling memoirist and animal scientist Temple Grandin, raised similar challenges to the notion that autistic people could never really see beyond themselves.

Markram began to do autism work himself as visiting professor at the University of California, San Francisco in 1999. Colleague Michael Merzenich, a neuroscientist, proposed that autism is caused by an imbalance between inhibitory and excitatory neurons. A failure of inhibitions that tamp down impulsive actions might explain behavior like Kai’s sudden move to pat the cobra. Markram started his research there.


MARKRAM MET HIS second wife, Kamila Senderek, at a neuroscience conference in Austria in 2000. He was already separated from Anat. “It was love at first sight,” Kamila says.

Her parents left communist Poland for West Germany when she was five. When she met Markram, she was pursuing a master’s in neuroscience at the Max Planck Institute. When Markram moved to Lausanne to start the Human Brain Project, she began studying there as well.

Tall like her husband, with straight blonde hair and green eyes, Kamila wears a navy twinset and jeans when we meet in her open-plan office overlooking Lake Geneva. There, in addition to autism research, she runs the world’s fourth largest open-access scientific publishing firm, Frontiers, with a network of over 35,000 scientists serving as editors and reviewers. She laughs when I observe a lizard tattoo on her ankle, a remnant of an adolescent infatuation with The Doors.

When asked whether she had ever worried about marrying a man whose child had severe behavioral problems, she responds as though the question never occurred to her. “I knew about the challenges with Kai,” she says, “Back then, he was quite impulsive and very difficult to steer.”

The first time they spent a day together, Kai was seven or eight. “I probably had some blue marks and bites on my arms because he was really quite something. He would just go off and do something dangerous, so obviously you would have to get in rescue mode,” she says, noting that he’d sometimes walk directly into traffic. “It was difficult to manage the behavior,” she shrugs, “But if you were nice with him then he was usually nice with you as well.”

“Kamila was amazing with Kai,” says Markram, “She was much more systematic and could lay out clear rules. She helped him a lot. We never had that thing that you see in the movies where they don’t like their stepmom.”

At the Swiss Federal Institute of Technology in Lausanne (EPFL), the couple soon began collaborating on autism research. “Kamila and I spoke about it a lot,” Markram says, adding that they were both “frustrated” by the state of the science and at not being able to help more. Their now-shared parental interest fused with their scientific drives.

They started by studying the brain at the circuitry level. Markram assigned a graduate student, Tania Rinaldi Barkat, to look for the best animal model, since such research cannot be done on humans.

Barkat happened to drop by Kamila’s office while I was there, a decade after she had moved on to other research. She greeted her former colleagues enthusiastically.

She started her graduate work with the Markrams by searching the literature for prospective animal models. They agreed that the one most like human autism involved rats prenatally exposed to an epilepsy drug called valproic acid (VPA; brand name, Depakote). Like other “autistic” rats, VPA rats show aberrant social behavior and increased repetitive behaviors like excessive self-grooming.

But more significant is that when pregnant women take high doses of VPA, which is sometimes necessary for seizure control, studies have found that the risk of autism in their children increases sevenfold. One 2005 study found that close to 9 percent of these children have autism.

Because VPA has a link to human autism, it seemed plausible that its cellular effects in animals would be similar. A neuroscientist who has studied VPA rats once told me, “I see it not as a model, but as a recapitulation of the disease in other species.”

Barkat got to work. Earlier research showed that the timing and dose of exposure was critical: Different timing could produce opposite symptoms, and large doses sometimes caused physical deformities. The “best” time to cause autistic symptoms in rats is embryonic day 12, so that’s when Barkat dosed them.

At first, the work was exasperating. For two years, Barkat studied inhibitory neurons from the VPA rat cortex, using the same laborious patch-clamping technique perfected by Markram years earlier. If these cells were less active, that would confirm the imbalance that Merzenich had theorized.

She went through the repetitious preparation, making delicate patches to study inhibitory networks. But after two years of this technically demanding, sometimes tedious, and time-consuming work, Barkat had nothing to show for it.

“I just found no difference at all,” she told me, “It looked completely normal.” She continued to patch cell after cell, going through the exacting procedure endlessly—but still saw no abnormalities. At least she was becoming proficient at the technique, she told herself.

Markram was ready to give up, but Barkat demurred, saying she would like to shift her focus from inhibitory to excitatory VPA cell networks. It was there that she struck gold.

“There was a difference in the excitability of the whole network,” she says, reliving her enthusiasm. The networked VPA cells responded nearly twice as strongly as normal—and they were hyper-connected. If a normal cell had connections to ten other cells, a VPA cell connected with twenty. Nor were they under-responsive. Instead, they were hyperactive, which isn’t necessarily a defect: A more responsive, better-connected network learns faster.

But what did this mean for autistic people? While Barkat was investigating the cortex, Kamila Markram had been observing the rats’ behavior, noting high levels of anxiety as compared to normal rats. “It was pretty much a gold mine then,” Markram says. The difference was striking. “You could basically see it with the eye. The VPAs were different and they behaved differently,” Markram says. They were quicker to get frightened, and faster at learning what to fear, but slower to discover that a once-threatening situation was now safe.

While ordinary rats get scared of an electrified grid where they are shocked when a particular tone sounds, VPA rats come to fear not just that tone, but the whole grid and everything connected with it—like colors, smells, and other clearly distinguishable beeps.

“The fear conditioning was really hugely amplified,” Markram says. “We then looked at the cell response in the amygdala and again they were hyper-reactive, so it made a beautiful story.”


THE MARKRAMS RECOGNIZED the significance of their results. Hyper-responsive sensory, memory and emotional systems might explain both autistic talents and autistic handicaps, they realized. After all, the problem with VPA rats isn’t that they can’t learn—it’s that they learn too quickly, with too much fear, and irreversibly.

They thought back to Kai’s experiences: how he used to cover his ears and resist going to the movies, hating the loud sounds; his limited diet and apparent terror of trying new foods.

“He remembers exactly where he sat at exactly what restaurant one time when he tried for hours to get himself to eat a salad,” Kamila says, recalling that she’d promised him something he’d really wanted if he did so. Still, he couldn’t make himself try even the smallest piece of lettuce. That was clearly overgeneralization of fear.

The Markrams reconsidered Kai’s meltdowns, too, wondering if they’d been prompted by overwhelming experiences. They saw that identifying Kai’s specific sensitivities preemptively might prevent tantrums by allowing him to leave upsetting situations or by mitigating his distress before it became intolerable. The idea of an intense world had immediate practical implications.

the amygdala

The VPA data also suggested that autism isn’t limited to a single brain network. In VPA rat brains, both the amygdala and the cortex had proved hyper-responsive to external stimuli. So maybe, the Markrams decided, autistic social difficulties aren’t caused by social-processing defects; perhaps they are the result of total information overload.


CONSIDER WHAT IT MIGHT FEEL like to be a baby in a world of relentless and unpredictable sensation. An overwhelmed infant might, not surprisingly, attempt to escape. Kamila compares it to being sleepless, jetlagged, and hung over, all at once. “If you don’t sleep for a night or two, everything hurts. The lights hurt. The noises hurt. You withdraw,” she says.

Unlike adults, however, babies can’t flee. All they can do is cry and rock, and, later, try to avoid touch, eye contact, and other powerful experiences. Autistic children might revel in patterns and predictability just to make sense of the chaos.

At the same time, if infants withdraw to try to cope, they will miss what’s known as a “sensitive period”—a developmental phase when the brain is particularly responsive to, and rapidly assimilates, certain kinds of external stimulation. That can cause lifelong problems.

Language learning is a classic example: If babies aren’t exposed to speech during their first three years, their verbal abilities can be permanently stunted. Historically, this created a spurious link between deafness and intellectual disability: Before deaf babies were taught sign language at a young age, they would often have lasting language deficits. Their problem wasn’t defective “language areas,” though—it was that they had been denied linguistic stimuli at a critical time. (Incidentally, the same phenomenon accounts for why learning a second language is easy for small children and hard for virtually everyone else.)

This has profound implications for autism. If autistic babies tune out when overwhelmed, their social and language difficulties may arise not from damaged brain regions, but because critical data is drowned out by noise or missed due to attempts to escape at a time when the brain actually needs this input.

The intense world could also account for the tragic similarities between autistic children and abused and neglected infants. Severely maltreated children often rock, avoid eye contact, and have social problems—just like autistic children. These parallels led to decades of blaming the parents of autistic children, including the infamous “refrigerator mother.” But if those behaviors are coping mechanisms, autistic people might engage in them not because of maltreatment, but because ordinary experience is overwhelming or even traumatic.

The Markrams teased out further implications: Social problems may not be a defining or even fixed feature of autism. Early intervention to reduce or moderate the intensity of an autistic child’s environment might allow their talents to be protected while their autism-related disabilities are mitigated or, possibly, avoided.

The VPA model also captures other paradoxical autistic traits. For example, while oversensitivities are most common, autistic people are also frequentlyunder-reactive to pain. The same is true of VPA rats. In addition, one of the most consistent findings in autism is abnormal brain growth, particularly in the cortex. There, studies find an excess of circuits called mini-columns, which can be seen as the brain’s microprocessors. VPA rats also exhibit this excess.

Moreover, extra minicolumns have been found in autopsies of scientists who were not known to be autistic, suggesting that this brain organization can appear without social problems and alongside exceptional intelligence.

Like a high-performance engine, the autistic brain may only work properly under specific conditions. But under those conditions, such machines can vastly outperform others—like a Ferrari compared to a Ford.


THE MARKRAMS’ FIRST PUBLICATION of their intense world research appeared in 2007: a paper on the VPA rat in the Proceedings of the National Academy of Sciences. This was followed by an overview in Frontiers in Neuroscience. The next year, at the Society for Neuroscience (SFN), the field’s biggest meeting, a symposium was held on the topic. In 2010, they updated and expanded their ideas in a second Frontiers paper.

Since then, more than three dozen papers have been published by other groups on VPA rodents, replicating and extending the Markrams’ findings. At this year’s SFN, at least five new studies were presented on VPA autism models. The sensory aspects of autism have long been neglected, but the intense world and VPA rats are bringing it to the fore.

Nevertheless, reaction from colleagues in the field has been cautious. One exception is Laurent Mottron, professor of psychiatry and head of autism research at the University of Montreal. He was the first to highlight perceptual differences as critical in autism—even before the Markrams. Only a minority of researchers even studied sensory issues before him. Almost everyone else focused on social problems.

But when Mottron first proposed that autism is linked with what he calls “enhanced perceptual functioning,” he, like most experts, viewed this as the consequence of a deficit. The idea was that the apparently superior perception exhibited by some autistic people is caused by problems with higher level brain functioning—and it had historically been dismissed as mere“splinter skills,” not a sign of genuine intelligence. Autistic savants had earlier been known as “idiot savants,” the implication being that, unlike “real” geniuses, they didn’t have any creative control of their exceptional minds. Mottron described it this way in a review paper: “[A]utistics were not displaying atypical perceptual strengths but a failure to form global or high level representations.”

However, Mottron’s research led him to see this view as incorrect. His own and other studies showed superior performance by autistic people not only in “low level” sensory tasks, like better detection of musical pitch and greater ability to perceive certain visual information, but also in cognitive tasks like pattern finding in visual IQ tests.

In fact, it has long been clear that detecting and manipulating complex systems is an autistic strength—so much so that the autistic genius has become a Silicon Valley stereotype. In May, for example, the German software firm SAP announced plans to hire 650 autistic people because of their exceptional abilities. Mathematics, musical virtuosity, and scientific achievement all require understanding and playing with systems, patterns, and structure. Both autistic people and their family members are over-represented in these fields, which suggests genetic influences.

“Our points of view are in different areas [of research,] but we arrive at ideas that are really consistent,” says Mottron of the Markrams and their intense world theory. (He also notes that while they study cell physiology, he images actual human brains.)

Because Henry Markram came from outside the field and has an autistic son, Mottron adds, “He could have an original point of view and not be influenced by all the clichés,” particularly those that saw talents as defects. “I’m very much in sympathy with what they do,” he says, although he is not convinced that they have proven all the details.

Mottron’s support is unsurprising, of course, because the intense world dovetails with his own findings. But even one of the creators of the “theory of mind” concept finds much of it plausible.

Simon Baron-Cohen, who directs the Autism Research Centre at Cambridge University, told me, “I am open to the idea that the social deficits in autism—like problems with the cognitive aspects of empathy, which is also known as ‘theory of mind’—may be upstream from a more basic sensory abnormality.” In other words, the Markrams’ physiological model could be the cause, and the social deficits he studies, the effect. He adds that the VPA rat is an “interesting” model. However, he also notes that most autism is not caused by VPA and that it’s possible that sensory and social defects co-occur, rather than one causing the other.

His collaborator, Uta Frith, professor of cognitive development at University College London, is not convinced. “It just doesn’t do it for me,” she says of the intense world theory. “I don’t want to say it’s rubbish,” she says, “but I think they try to explain too much.”


AMONG AFFECTED FAMILIES, by contrast, the response has often been rapturous. “There are elements of the intense world theory that better match up with autistic experience than most of the previously discussed theories,” says Ari Ne’eman, president of the Autistic Self Advocacy Network, “The fact that there’s more emphasis on sensory issues is very true to life.” Ne’eman and other autistic people fought to get sensory problems added to the diagnosis in DSM-5 — the first time the symptoms have been so recognized, and another sign of the growing receptiveness to theories like intense world.

Steve Silberman, who is writing a history of autism titled NeuroTribes: Thinking Smarter About People Who Think Differently, says, “We had 70 years of autism research [based] on the notion that autistic people have brain deficits. Instead, the intense world postulates that autistic people feel too much and sense too much. That’s valuable, because I think the deficit model did tremendous injury to autistic people and their families, and also misled science.”

Priscilla Gilman, the mother of an autistic child, is also enthusiastic. Her memoir, The Anti-Romantic Child, describes her son’s diagnostic odyssey. Before Benjamin was in preschool, Gilman took him to the Yale Child Study Center for a full evaluation. At the time, he did not display any classic signs of autism, but he did seem to be a candidate for hyperlexia—at age two-and-a-half, he could read aloud from his mother’s doctoral dissertation with perfect intonation and fluency. Like other autistic talents, hyperlexia is often dismissed as a “splinter” strength.

At that time, Yale experts ruled autism out, telling Gilman that Benjamin “is not a candidate because he is too ‘warm’ and too ‘related,’” she recalls. Kai Markram’s hugs had similarly been seen as disqualifying. At twelve years of age, however, Benjamin was officially diagnosed with Autism Spectrum Disorder.

According to the intense world perspective, however, warmth isn’t incompatible with autism. What looks like antisocial behavior results from being too affected by others’ emotions—the opposite of indifference.

Indeed, research on typical children and adults finds that too much distress can dampen ordinary empathy as well. When someone else’s pain becomes too unbearable to witness, even typical people withdraw and try to soothe themselves first rather than helping—exactly like autistic people. It’s just that autistic people become distressed more easily, and so their reactions appear atypical.

“The overwhelmingness of understanding how people feel can lead to either what is perceived as inappropriate emotional response, or to what is perceived as shutting down, which people see as lack of empathy,” says Emily Willingham. Willingham is a biologist and the mother of an autistic child; she also suspects that she herself has Asperger syndrome. But rather than being unemotional, she says, autistic people are “taking it all in like a tsunami of emotion that they feel on behalf of others. Going internal is protective.”

At least one study supports this idea, showing that while autistic people score lower on cognitive tests of perspective-taking—recall Anne, Sally, and the missing marble—they are more affected than typical folks by other people’s feelings. “I have three children, and my autistic child is my most empathetic,” Priscilla Gilman says, adding that when her mother first read about the intense world, she said, “This explains Benjamin.”


Benjamin’s hypersensitivities are also clearly linked to his superior perception. “He’ll sometimes say, ‘Mommy, you’re speaking in the key of D, could you please speak in the key of C? It’s easier for me to understand you and pay attention.”


Because he has musical training and a high IQ, Benjamin can use his own sense of “absolute pitch”—the ability to name a note without hearing another for comparison—to define the problem he’s having. But many autistic people can’t verbalize their needs like this. Kai, too, is highly sensitive to vocal intonation, preferring his favorite teacher because, he explains, she “speaks soft,” even when she’s displeased. But even at 19, he isn’t able to articulate the specifics any better than that.


ON A RECENT VISIT to Lausanne, Kai wears a sky blue hoodie, his gray Chuck Taylor–style sneakers carefully unlaced at the top. “My rapper sneakers,” he says, smiling. He speaks Hebrew and English and lives with his mother in Israel, attending a school for people with learning disabilities near Rehovot. His manner is unselfconscious, though sometimes he scowls abruptly without explanation. But when he speaks, it is obvious that he wants to connect, even when he can’t answer a question. Asked if he thinks he sees things differently than others do, he says, “I feel them different.”

He waits in the Markrams’ living room as they prepare to take him out for dinner. Henry’s aunt and uncle are here, too. They’ve been living with the family to help care for its newest additions: nine-month-old Charlotte and Olivia, who is one-and-a-half years old.

“It’s our big patchwork family,” says Kamila, noting that when they visit Israel, they typically stay with Henry’s ex-wife’s family, and that she stays with them in Lausanne. They all travel constantly, which has created a few problems now and then. None of them will ever forget a tantrum Kai had when he was younger, which got him barred from a KLM flight. A delay upset him so much that he kicked, screamed, and spat.

Now, however, he rarely melts down. A combination of family and school support, an antipsychotic medication that he’s been taking recently, and increased understanding of his sensitivities has mitigated the disabilities Kai associated with his autism.

“I was a bad boy. I always was hitting and doing a lot of trouble,” Kai says of his past. “I was really bad because I didn’t know what to do. But I grew up.” His relatives nod in agreement. Kai has made tremendous strides, though his parents still think that his brain has far greater capacity than is evident in his speech and schoolwork.

As the Markrams see it, if autism results from a hyper-responsive brain, the most sensitive brains are actually the most likely to be disabled by our intense world. But if autistic people can learn to filter the blizzard of data, especially early in life, then those most vulnerable to the most severe autism might prove to be the most gifted of all.

Markram sees this in Kai. “It’s not a mental retardation,” he says, “He’s handicapped, absolutely, but something is going crazy in his brain. It’s a hyper disorder. It’s like he’s got an amplification of many of my quirks.”

One of these involves an insistence on timeliness. “If I say that something has to happen,” he says, “I can become quite difficult. It has to happen at that time.

He adds, “For me it’s an asset, because it means that I deliver. If I say I’ll do something, I do it.” For Kai, however, anticipation and planning run wild. When he travels, he obsesses about every move, over and over, long in advance. “He will sit there and plan, okay, when he’s going to get up. He will execute. You know he will get on that plane come hell or high water,” Markram says. “But he actually loses the entire day. It’s like an extreme version of my quirks, where for me they are an asset and for him they become a handicap.”

If this is true, autistic people have incredible unrealized potential. Say Kai’s brain was even more finely tuned than his father’s, then it might give him the capacity to be even more brilliant. Consider Markram’s visual skills. Like Temple Grandin, whose first autism memoir was titled Thinking In Pictures, he has stunning visual abilities. “I see what I think,” he says, adding that when he considers a scientific or mathematical problem, “I can see how things are supposed to look. If it’s not there, I can actually simulate it forward in time.”

At the offices of Markram’s Human Brain Project, visitors are given a taste of what it might feel like to inhabit such a mind. In a small screening room furnished with sapphire-colored, tulip-shaped chairs, I’m handed 3-D glasses. The instant the lights dim, I’m zooming through a brightly colored forest of neurons so detailed and thick that they appear to be velvety, inviting to the touch.

The simulation feels so real and enveloping that it is hard to pay attention to the narration, which includes mind-blowing facts about the project. But it is also dizzying, overwhelming. If this is just a smidgen of what ordinary life is like for Kai it’s easier to see how hard his early life must have been. That’s the paradox about autism and empathy. The problem may not be that autistic people can’t understand typical people’s points of view—but that typical people can’t imagine autism.

Critics of the intense world theory are dismayed and put off by this idea of hidden talent in the most severely disabled. They see it as wishful thinking, offering false hope to parents who want to see their children in the best light and to autistic people who want to fight the stigma of autism. In some types of autism, they say, intellectual disability is just that.

“The maxim is, ‘If you’ve seen one person with autism, you’ve seen one person with autism,’” says Matthew Belmonte, an autism researcher affiliated with the Groden Center in Rhode Island. The assumption should be that autistic people have intelligence that may not be easily testable, he says, but it can still be highly variable.

He adds, “Biologically, autism is not a unitary condition. Asking at the biological level ‘What causes autism?’ makes about as much sense as asking a mechanic ‘Why does my car not start?’ There are many possible reasons.” Belmonte believes that the intense world may account for some forms of autism, but not others.

Kamila, however, insists that the data suggests that the most disabled are also the most gifted. “If you look from the physiological or connectivity point of view, those brains are the most amplified.”

The question, then, is how to unleash that potential.

“I hope we give hope to others,” she says, while acknowledging that intense-world adherents don’t yet know how or even if the right early intervention can reduce disability.

The secret-ability idea also worries autistic leaders like Ne’eman, who fear that it contains the seeds of a different stigma. “We agree that autistic people do have a number of cognitive advantages and it’s valuable to do research on that,” he says. But, he stresses, “People have worth regardless of whether they have special abilities. If society accepts us only because we can do cool things every so often, we’re not exactly accepted.”


The MARKRAMS ARE NOW EXPLORING whether providing a calm, predictable early environment—one aimed at reducing overload and surprise—can help VPA rats, soothing social difficulties while nurturing enhanced learning. New research suggests that autism can be detected in two-month-old babies, so the treatment implications are tantalizing.

So far, Kamila says, the data looks promising. Unexpected novelty seems to make the rats worse—while the patterned, repetitive, and safe introduction of new material seems to cause improvement.

In humans, the idea would be to keep the brain’s circuitry calm when it is most vulnerable, during those critical periods in infancy and toddlerhood. “With this intensity, the circuits are going to lock down and become rigid,” says Markram. “You want to avoid that, because to undo it is very difficult.”

For autistic children, intervening early might mean improvements in learning language and socializing. While it’s already clear that early interventions can reduce autistic disability, they typically don’t integrate intense-world insights. The behavioral approach that is most popular—Applied Behavior Analysis—rewards compliance with “normal” behavior, rather than seeking to understand what drives autistic actions and attacking the disabilities at their inception.

Research shows, in fact, that everyone learns best when receiving just the right dose of challenge—not so little that they’re bored, not so much that they’re overwhelmed; not in the comfort zone, and not in the panic zone, either. That sweet spot may be different in autism. But according to the Markrams, it is different in degree, not kind.

Markram suggests providing a gentle, predictable environment. “It’s almost like the fourth trimester,” he says.

To prevent the circuits from becoming locked into fearful states or behavioral patterns you need a filtered environment from as early as possible,” Markram explains. “I think that if you can avoid that, then those circuits would get locked into having the flexibility that comes with security.”


Creating this special cocoon could involve using things like headphones to block excess noise, gradually increasing exposure and, as much as possible, sticking with routines and avoiding surprise. If parents and educators get it right, he concludes, “I think they’ll be geniuses.”


IN SCIENCE, CONFIRMATION BIAS is always the unseen enemy. Having a dog in the fight means you may bend the rules to favor it, whether deliberately or simply because we’re wired to ignore inconvenient truths. In fact, the entire scientific method can be seen as a series of attempts to drive out bias: The double-blind controlled trial exists because both patients and doctors tend to see what they want to see—improvement.

At the same time, the best scientists are driven by passions that cannot be anything but deeply personal. The Markrams are open about the fact that their subjective experience with Kai influences their work.

But that doesn’t mean that they disregard the scientific process. The couple could easily deal with many of the intense world critiques by simply arguing that their theory only applies to some cases of autism. That would make it much more difficult to disprove. But that’s not the route they’ve chosen to take. In their 2010 paper, they list a series of possible findings that would invalidate the intense world, including discovering human cases where the relevant brain circuits are not hyper-reactive, or discovering that such excessive responsiveness doesn’t lead to deficiencies in memory, perception, or emotion. So far, however, the known data has been supportive.

But whether or not the intense world accounts for all or even most cases of autism, the theory already presents a major challenge to the idea that the condition is primarily a lack of empathy, or a social disorder. Intense world theory confronts the stigmatizing stereotypes that have framed autistic strengths as defects, or at least as less significant because of associated weaknesses.

And Henry Markram, by trying to take his son Kai’s perspective—and even by identifying so closely with it—has already done autistic people a great service, demonstrating the kind of compassion that people on the spectrum are supposed to lack. If the intense world does prove correct, we’ll all have to think about autism, and even about typical people’s reactions to the data overload endemic in modern life, very differently.

From left: Kamila, Henry, Kai, and Anat

Autism And Wandering

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THE DAY MY SON WENT MISSING
Wandering Is A Major Concern For Parents Of Children With Autism

By LORI McILWAIN, via NYTimes.com

NOW in its sixth week, the search for Avonte Oquendo, a 14-year-old boy from Queens with autism, is shining a light on the issue of wandering among people with autism. On Oct. 4, Avonte managed to slip away after lunch from his school in Long Island City — even though he was known to wander during classroom transitions.

While most people associate wandering with elderly sufferers from Alzheimer’s or other types of dementia, a recent study published in the journal Pediatrics found that 49 percent of children with autism were prone to the behavior. Given the prevalence of autism — at one in 88 children, or one in 50 school-age children — it’s clear this is an everyday concern for many thousands of parents.

The day Avonte went missing, a Friday, a 12-year-old boy with autism was in a medically induced coma in Oakland, Calif. According to reports, he had wandered from his mother in a parking lot and entered eastbound traffic on I-580, where he was struck by at least one vehicle. By Sunday, another child with autism had gone missing: 5-year-old Devonte Dye wandered from his grandparents’ home in southeast Missouri. Tragically, he was found the next day, drowned, in a slough near the St. Francis River.

Since 2011, 41 American children with autism have died after wandering, or “bolting,” from caregivers. Water is often a fatal draw for these children. Since April of this year, 14 out of 16 deaths were from drowning.

Even as a campaigner, I did not appreciate the full magnitude of the issue until my own child went missing in 2007. Connor was 7 years old when he left his schoolyard, unnoticed, through an unlocked gate and made his way toward a four-lane highway.

Many children with autism have particular fascinations, and Connor’s is with highway exit signs. For our family, driving up and down the interstate was a fun day out. We never suspected he’d attempt to get there on foot.

Luckily, a passing driver noticed our son; the driver turned around, just in case. When Connor failed to answer a few basic questions, he was taken to another nearby school. That school called the police. The police had no idea how to deal with Connor: An officer mistook our mostly nonverbal child for a defiant rule-breaker who needed some “tough love.”

Finally, a staff member at the school reached me, but exactly how long Connor had been missing by the time I got to him, no one could tell me. Connor was hysterical, shaking. I scooped him up in a hug, whispering through my own tears, “You’re O.K.”

That was our big wake-up call, but it didn’t end there. Connor’s wandering had started in day care and continued through school. He slipped out during classroom transitions, as Avonte did. We found ourselves keeping Connor home on days we feared it might be easier for him to slip away. Here I was, an advocate for others, yet I could not keep my own child safe.

Today, the National Autism Association, where I work, provides information and resources for caregivers. Back then, there were no fact sheets to support our pleas for greater vigilance. And, to this day, there is no guidance from the Department of Education; no protocols, not even a mandate to notify parents of any wandering attempts. At the N.A.A., we often hear from parents who have a child who cannot sleep, forcing caregivers to barricade doors and take shifts staying awake. Others are so desperate that they hide their child’s shoes to slow them down in case they escape.

Under federal criteria, which most states follow, the Amber Alert system can be used only for children known to have been abducted. Wandering doesn’t count. Instead, the refrain most often thrown at parents is simply “watch your child better,” or “find a school that will watch your child better.”

Imagine if that were the advice given to those who care for Alzheimer’s patients. In fact, the Department of Justice provides about $1 million a year for first-responder training on Alzheimer’s-related wandering and tracking technology. There is no equivalent funding for autism-specific wandering and no more than a promise, in 2011, from Kathleen Sebelius, the secretary of health and human services, to give the issue “serious consideration.”

If consideration had become action, perhaps Avonte would be home safe right now. There is still a lack of awareness in schools. Simply to provide better teacher training on wandering would help prevent future disappearances.

So where is the federal autism program on wandering prevention? Yes, budgets are tight, but here is our choice: We can spend the money now on awareness and training, or later, on huge, intensive searches for missing children.

Now 13, my son wears a tracking device, and is learning ways to keep himself safe. In his room are miniature replicas of his favorite exit signs, and a laptop, which he uses to draw them whenever he likes. He hasn’t attempted to reach the highway since getting the laptop. He’s also at middle school now, cared for by an amazing staff. While Connor still has phobias that can make bolting behaviors difficult to prevent, we finally have the resources to help keep him safe.

But not nearly enough is being done to keep children like Avonte from disappearing. Too many parents are still going through the anguish of losing their wandering children.

http://www.nytimes.com/2013/11/13/opinion/wandering-is-a-major-concern-for-parents-of-children-with-autism.html?_r=0

Belonging To A School Team Is A Right Of Every Autistic Student-Athlete, Regardless Of Age

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RUNNER WITH AUTISM OVERCOMES LEGAL OBSTACLE

“Come on, David!” “C’mon, c’mon!” “Come on, Dave, yeah!”

With shouts of encouragement and steady applause from his teammates, David Gorczynski crossed the finish line at Orchard Park High School late Tuesday afternoon, long after most of the other runners in one more race that he almost was not allowed to run.

But David Gorczynski is still running, and because of his fight, all young athletes with disabilities in New York will have one less obstacle to overcome in the seasons ahead.

Gorczynski, 20, has autism and loves to run. This summer, his family’s court case against a state education regulation that banned him from competing because of his age attracted wide attention. Hundreds of people – including his Orchard Park teammates and runners from other schools – signed an online petition objecting to the law, and in August, State Supreme Court Justice John L. Michalski issued an injunction that would allow David to run.

“He’s a great addition to the team,” said David Wert, the Orchard Park cross country coach. “To see how much athletics plays into his life is amazing. And the respect – how my boys have stuck up for him – has been great. They are stand-up kids.”

The statute that was going to force Gorczynski off the team actually was written in 2010 to make sure disabled students who were in high school beyond age 18 could still take part in noncontact sports, as long as their participation would not affect the outcome. (In cross country, only the scores of the top finishers are counted. Since Gorczynski always finishes last, his time doesn’t count to anyone but him).

But that regulation included a subsection saying students 19 and older could only get the waiver once.

David already had one waiver last season, when he was 19. He needed another to compete as a 20-year-old. Keeping him on the team was important enough to his family that, with the help of Neighborhood Legal Services, they went to court.

“The important thing about being included in the school is that school is part of the real world,” explained David’s mother, Mary Ellen Gorczynski. “The real world is not a ‘special needs’ place.”

And organized athletic activity helps young people who do have special needs make sense of real-world interactions.

David Gorczynski, 20, who has autism, runs on the cross country course at Orchard Park High School during a meet on Tuesday.

Dr. Michelle Hartley-McAndrew knows all about that. She is medical director of the Children’s Guild Foundation Autism Spectrum Disorder Center at Women & Children’s Hospital and teaches neurology at the University at Buffalo School of Medicine and Biomedical Sciences.

Pointing out that exercise is good for all young people, whether they have a disability or not, she said participation in athletics enhances self-esteem, social skills and happiness.

David is not her patient, but she said athletics would have similar benefits for anyone with autism.

“It’s a good opportunity for them to socialize in a structured way,” she said. “It takes the pressure off. They can feel part of the event without experiencing the anxiety that can come from less-structured social engagements.”

Hartley-McAndrew said young people with autism may have trouble processing the variables in team sports like football or soccer, with players heading in different directions, with a lot of noise and motion. They are more suited to things like swimming or golf. David’s mother called cross country “an individual team sport,” with the added benefit of having no try-outs to pass.

“In sports like these, they don’t have to worry about verbal or nonverbal cues,” Hartley-McAndrew said. “They don’t have to anticipate other people’s movements but still can be part of the team and the shared experience.”

Wert says that, for all his athletes, including Gorczynski, cross country builds character and closeness.

“Everyone runs the same course, whether you’re JV, girls, boys, it’s the same challenge,” he said. “And it’s a very mental sport. Running 3.1 miles, 5K, is something many adults can’t do. Putting one foot in front of the other takes a lot of mind strength. The first mile, you’re maybe running on adrenaline, but the second mile, you realize there are two more miles to go. You have to push yourself through it.”

David doesn’t run alone. Mary Ellen Gorczynski finds places around the course from which to cheer her son on, and he also has a “running buddy,” Terri Swaydis. She was already a runner and working with people with special needs – she has a 21-year-old son who also is disabled – when she started partnering with David three years ago.

Teammates like Drew Filsinger and others will bump fists with David to encourage him before the starting gun, but it is Swaydis’ job to keep him on the course, which can be rambling and looping.

It isn’t known how many other young athletes were affected by the waiver limit and accepted it without protest, but once news of the family’s lawsuit was publicized, help came to make sure it would not keep any others off the field.

While the judge was still considering his ruling, State Sen. Tim Kennedy, D-Buffalo, contacted State Education Commissioner John B. King Jr. and members of the Board of Regents to ask that the waiver limit be removed from the regulation.

Robert M. Bennett, Western New York’s Regents representative, supported Kennedy’s request and at its September meeting the board passed an amendment allowing for additional waivers from the age requirement.

The state Education Department supports the change and is expected to make it permanent in December, after the required public comment period.

Tuesday evening, David Gorczynski crossed the finish line about 47 minutes after he started his race. While cheers rang out around him, a look of pride and satisfaction swept across his face.

 

 http://www.buffalonews.com/city-region/orchard-park/runner-with-autism-overcomes-legal-obstacle-20131008

 

Autistic Teen Featured As Comic Book Hero

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DOVER MAN’S COMIC BOOK EMBRACES AUTISM, EMOTION

In the Face Value comic book series, the hero is a middle-schooler with autism who will explore basic human emotions in four issues. 

 

Imagine Earth in 2072: Aliens have invaded the planet and deemed humans dangerously emotional, causing a war between the flat-faced villain Dr. Mobius and Michael, a middle-school-age boy.

Michael must battle through social pressures, misunderstanding and bullying on his way to understanding the emotions of other people and himself. Using science and a little help from his robotic therapeutic support staff, T.E.S.S., he will come closer to emotional discovery.

As the main hero in the steampunk-noir comic book series, Face Value Comics, he’s a bit different from most: Michael is autistic. And that is unheard of in the world of comics, said founder Dave Kot of Dover Township.

 

                       

Michael is a young hero with autism in a comic book by Face Value founder Dave Kot of Dover Township. 

 

“We’re the first and only comic book to feature an autistic hero,” he said. “Our main hero has autism, and it’s OK.”

The concept: Kot founded Face Value two years ago, and it aims to provide both entertainment and education about emotional understanding in social situations to young readers and their families, he said.

“Everyone can learn more about emotions,” Kot, 38, said. He added that the social lessons weaved into the story are designed for everyone — not just people with autism or comic book enthusiasts.

Using comic books as a teaching tool, the concept implements a newer science, psychologist Paul Ekman’s Facial Action Coding System, to explain the nuances of communication in a simple way, he said. Kot has a close family member with autism and is a therapist certified in FACS who has worked with many autistic clients, he said.

The system categorizes human emotions based on facial muscle pulls and says there are seven basic emotions.

The comic book series, which is still in production, will consist of four 16-to-22-page issues exploring happiness, sadness, anger and fear.

The happiness issue will address how to make genuine friendships, and the sadness issue will cover issues like grief and rejection,

Kot said. The anger issue will tackle bullying and peer pressure, and the fear issue will help kids plan for tests and sudden changes. A fifth basic emotion, surprise, will be peppered throughout those issues.That leaves two emotions: contempt and disgust, which will be combined into a special edition that explores villain Dr. Mobius’ backstory. He is named after a syndrome that prevents one from displaying emotion.

Who it’s for: Although the comic books will specifically address autism and understanding emotion, they’re not confined to one specific audience, said Face Value business manager Jeremy Flickinger, 25, of Warrington Township.

 

Flickinger

“In my opinion, anyone with any level of autism can learn and utilize this,” he said.

The series will be aimed toward those of middle-school age and be as close to G- or PG-rated as possible, with a minimal level of violence, Kot said. The team is also considering the possibilities of adult-themed material in the future, he said.

The two are passionate about their mission and have pushed the thought of money aside, he said.

“The people on our team are willing to go without financial compensation to see our dream come alive,” Kot said.

So far, word is spreading: The company’s fanbase on Facebook hit 250 likes in just under a month, he said.

“It’s growing, and it’s exciting,” he said.

Flickinger agreed.  “Why not teach the world this?” he said.

Local support: As the Face Value team prepares to publish its first issue, it has connected with local comic book stores about its cause, Kot said.

Comix Connection in West Manchester Township plans to put the comics on its shelves once production is finished, said manager Jared Wolf.

“I think it’s a really nice, original idea,” he said.

The unprecedented concept could stretch across readership demographics, Wolf said.

“Since there hasn’t been a superhero with autism before, it will open people’s minds about autism and let them know about it in a fun way,” he said. “I think families (affected by) autism might also have interest in the book.”

Comic Store West in Springettsbury Township also supports the endeavor, both because the series is about autism and because the creators are local, said manager Scott Koehler.

“We are going to have it here for sale once it’s finished,” he said. “It’s very interesting.”

Kot, Flickinger and their small team of artists have worked long hours on the series and hope to raise the money to produce the issues as soon as possible, they said.

“I am deeply moved and cry almost daily at the responses others freely give me about this project,” Kot said. “So I feel exceptionally responsible for providing a quality product in the shortest amount of time.”

— Reach Mollie Durkin at mdurkin@yorkdispatch.com.

How to help

Face Value Comics is seeking support as it begins production of its four-part comic book series.

To donate to the cause, visit http://www.facebook.com/FaceValueComics. For volunteer opportunities, contact Dave Kot at dkotfacevalue@gmail.com or Jeremy Flickinger at jeremyfacevalue@gmail.com.

http://www.yorkdispatch.com/breaking/ci_24068604/dover-mans-comic-book-embraces-autism-emotion

Autistic Man Breaks Through The Silence

Posted on Updated on

Please click the article link at the end of the post to view the original article with video -Ed

Watson Dollar went silent at age 2, then two decades later, he began to communicate with his mother, using an iPad.

JACKSON, Miss. — The last word Watson Dollar spoke before autism erased his ability to do so was “lights.”

The chubby cheeked toddler lay in his father’s arms as anesthesia, administered for an ear-tube surgery, dimmed his consciousness. Head lolling back, body going limp, Watson gazed at the fluorescent lamps above him, uttering the one-syllable noun.

Then he closed his eyes and never spoke again. That was 20 years ago.

In the two months between Halloween and Christmas of 1992, Watson had lost almost of all of his 150-word vocabulary along with an interest in the world.

His parents initially failed to notice the change, chalking up the subtle signs to stubbornness or fatigue or the ever-changing nature of a developing child.

By New Year’s, though, the difference was both inescapable and worrisome.

The smiling, inquisitive boy who’d sung and pranced around his house in Magee now sat sullen and withdrawn. He rarely spoke. Instead of saying “juice” or “outside,” Watson met his needs by tugging the nearest adult to the refrigerator or the backdoor.

Watson also stopped playing with his toys. He used to push little cars around the living room, making vroom-vroom sounds. Now he held the vehicles upside down and close to his face while silently fixating on the wheels he’d spin for hours with his tiny fingers.

By the time his pediatrician discovered fluid in his ears and recommended tubes, Watson was a different child. His parents, Pam and Donald Dollar, hoped the surgery would return him to his previous state.

“He can’t hear, that’s why this is happening,” Pam remembers the doctor saying. “As soon as we get those tubes in, everything will be fine.”

But the procedure changed nothing.

The Dollars got the dreaded diagnosis on May 17, 1993 — 10 days after his second birthday — autism — and took immediate action.

They bombarded Watson with therapy and enrolled him in Magnolia Speech School in Jackson. They enlisted the best doctors and attended the latest autism conferences. They did everything they could to loosen autism’s grip, but it wouldn’t let go.

Pam and Donald eventually accepted reality: The disorder had permanently severed communication in their only child and, in doing so, isolated him from the world. Watson was lost, and he wasn’t coming back.

His own mother often wondered, “Is he even in there?”

That question lingered two decades, until, on Nov. 11, 2011, Watson sent a postcard from the other side.

Watson awoke from sleep thirsty and plodded down the hall to the kitchen, where his mother had left a half-empty water bottle on the counter. He reached for it.

Still awake and sitting nearby, Pam quickly snatched the bottle. She was sick and didn’t want Watson to get her germs. He needed to get his own water instead.

Because she doubted he’d understand a verbal explanation, Pam grabbed the bottle and drank all its contents.

Watson became agitated and was headed toward a full-blown meltdown.

So Pam tried something she’d never before attempted. She grabbed her iPad and pulled up its keyboard, then typed, “Mom is sick, when someone is sick they have germs, germs can make you …”

Watson hesitated, then grabbed his mother’s hand and slowly typed the last word of her sentence: “sick.”

Pam couldn’t believe it. Watson not only understood, but he was able to respond — albeit slowly and while clutching her hand. Still, she wanted to see if he’d do it again.

“Mom’s water had …” she typed.

“Germs,” Watson finished.

“Mom doesn’t want Watson to get sick. OK?” she wrote.

“OK,” Watson replied.

A simple exchange by all accounts, but for Pam it was a breakthrough. This was the first conversation she’d ever had with her now full-grown son and the first tangible evidence that he was, indeed, “in there.”

She decided to press her luck.

“Is there anything else you want to tell me?” she asked out loud.

Watson grabbed her hand and typed the words she’d been waiting to hear his whole life: “I love you, Mom. Very much.”

And with that, Watson cracked a door between two worlds long ago severed by autism. That door would open again and again in the months that followed, each time revealing more of the young man who’d been trapped behind it for years.

Watson, it turns out, has been watching us all along.

His mind has cataloged a lifetime of memories that he now recalls for his mother and a few others with whom he’s comfortable enough to type. He remembers the way his preschool teachers physically restrained him and said he hated that school because of it.

“It was abuse,” he typed.

He remembers wanting to console his second-grade classmate after her father had died, but he didn’t know how. He felt sad and helpless. It still haunts him to this day.

He can name the kids who were mean to him in school, as well as those who showed him kindness.

He’s also capable of complex thoughts and is keenly aware of his disorder, as evidenced by this Dec. 13, 2011, conversation between him and his mother.

Pam: “Do you understand autism?”

Watson: “Yes, I live with it.”

Pam: “Yes, you do. You understand it better than anyone. Do you like autism?”

Watson: “No, it is hard to deal with. I wish I did not have it.”

Pam: “I know. Me too. It has to be very hard for you.”

Watson: “(I) try to really deal with my weird stuff, but it’s hard because so many things to deal with.”

Pam: “So what are the hardest things to deal with?”

Watson: “Sounds (are) too loud, and (I) can’t tell you things, like, God, I pray to get better.”

Pam: “You are getting better, every day. We can talk like we are now, and we weren’t able to do that until a month ago.”

Watson: “For a long time I wanted to talk to you, and now I can. That is great.”

Pam” Yes, it’s wonderful. I’ve wanted to talk to you for years, too. And now we can, so that means you’re getting better.”

Watson: “Really glad.”

Pam: “Me, too. Is there anything you think people need to know about autism?”

Watson: “For people (to) try to understand more. Then they will be nicer to people with autism.

Pam: “Do you remember when you got autism?”

Watson: “Yes, it was when I was 4.”

Pam: “No, it was when you were 2.”

Watson: “I don’t remember that.”

Pam: “You were talking and were very socially outgoing, and then you changed. Something happened, but we still don’t know what.”

Watson: “Really? What happened to me?”

Pam: “We still don’t know.”

People like Watson who have autism suffer deficits in social interaction, communication and adaptability.

Hallmark signs of the disorder include a lack of eye contact, limited or absent language, social awkwardness, repetitive behaviors like rocking or humming, and a fixation on a narrow set of interests.

An estimated one in 50 children has autism, and boys are four times more likely to get it than girls, according to the Centers for Disease Control and Prevention.

Some people with the disorder are considered high functioning and have the ability to talk and interact with the environment despite their differences. Others, like Watson, are labeled low functioning because they lack language and a means with which to connect to the world.

The disorder typically appears before a person’s second birthday but most likely is present from birth, according to the latest research.

Studies by doctors at the Marcus Autism Center in Atlanta reveal subtle, yet key, differences in early infancy that disrupt the entire developmental process.

Using eye-tracking technology, researchers found infants later diagnosed with autism don’t focus on the eyes when looking at a face. Instead, they look at the mouth, or they don’t look at the face at all.

That’s opposite of typically developing children who glean important social cues from maintaining eye contact with caregivers.

Researchers also found typical children enjoy connecting to others — the pleasure centers of their brain light up when they do. This joy motivates them to deepen their connections through communication.

Children with autism don’t get pleasure from connection and thus lose their motivation to communicate.

“The question isn’t ‘Why aren’t they using speech?’ We know why; it’s not rewarding to them,” said Gordon Ramsay, director of the Spoken Communication Laboratory at the Marcus Autism Center. “The question is ‘Why isn’t it rewarding?’ That’s really what we don’t understand.”

The answer lies somewhere inside the autistic brain, where mutations in any one of about 1,000 different genes disrupt normal synaptic firing, otherwise known as neural communication.

Everything we do — from talking to walking to slicing bread — requires neurons from different parts of the brain to share information, said Larry Young, director of Emory University’s Center for Translational Social Neuroscience.

When that free flow of information slows or stops, seemingly simple tasks become difficult or impossible.

Think of an orchestra. In a typical venue, you would hear each instrument playing together harmoniously. In an autistic venue, you would still hear each instrument but fail to integrate them into a coherent piece of music.

Watson’s parents say their son used to hear the full orchestra, as evidenced by video footage of the toddler interacting normally with peers and having simple back-and-forth dialogs. But for whatever reason, the instruments stopped harmonizing.

Roughly one in four children with autism experience what’s commonly called “regression,” Ramsay said. That means they lost skills that they’d already gained. The rest simply fail to develop those skills in the first place. No one yet understands why.

Either way, those on the autism spectrum experience the world as a confusing swirl of disjointed information. Those affected most severely likely give up trying to understand it, Young said, and they retreat into themselves and their narrow set of interests.

That appears to be the case for Watson, who spent most of the past two decades physically present but socially isolated.

Evident during a visit with Watson in his family’s living room this summer, the odd behavior of the young man obscures his inner world. While his parents chat with a reporter, Watson leans back in his recliner and stares at the ceiling while unintelligibly reciting the script of a favorite movie.

“Oh-oh-oh-um,” he says, his voice rising and falling with inflection. “Ahhhh! Du-sham-a-shish. Wee-eem, way-way-way. Woam.”

Sometimes he’ll shake his hands back and forth and look at them. Or he’ll flip through the pages of a Dr. Seuss book; he always carries one around.

Watson doesn’t acknowledge when the conversation turns to him and doesn’t respond to his name, which is mentioned numerous times during the course of the morning.

Only when someone directly engages him does Watson snap to attention. Then he’ll smile or follow a command. Otherwise, he seems lost, disconnected, on his own.

“What is your favorite Dr. Seuss book?”

His mom types the query on her iPad and summons Watson to read it.

Standing over her, he studies the screen and composes a reply. It takes him about one minute to type it: “Really? You yearn really (to) know?”

“Yes, I would love to know,” Pam types for the reporter. “Will you tell me?”

“Yes,” Watson types. Then he thinks for a moment. “Too hard to very much choose.”

After a few more rounds of questions, Watson starts to pace. His vocalizations become louder. He’s getting upset.

“What’s wrong?” Pam types.

“These incessant questions,” Watson replies. He sits down, and it’s clear the session has ended.

“Incessant.” Not a feeble-minded word.

For those who have known Watson the longest, his sudden communication comes as both a shock and a long-awaited chance to ask him their most burning questions.

Chaneka Roby has been Watson’s friend since first grade. She sat by him in all their elementary school classes and visited him daily when he later was placed in a separate special education room. She had always wondered whether he truly enjoyed her company or just tolerated her presence.

“That was my first question,” Roby said. “I asked him, ‘Do you like me?’ ”

Watson said yes.

Roby, who now attends Hinds Community College, discovered Watson could type after reading about it on his mother’s Facebook page. She got excited, and it wasn’t long before she found herself engaged in her own conversation with her childhood friend.

They swapped stories and shared memories. They also solved at least one mystery.

“I asked him why he bit my finger on the playground when we were in first grade,” Roby said. “I had always wondered about that. Why did he do it?”

It turns out Watson had been frustrated by Roby’s relentless urging that he go down the slide before he was ready. Eventually, he’d had enough of her prodding and bit her.

“To me, it’s amazing he can type a sentence,” Roby said. “It’s a mystery and a blessing. I wish we would have had this technology in junior high and high school.”

The first iPad hit the markets in April 2010. But while the device indeed boasts a handy keypad, typing itself has been around for decades.

So why didn’t Watson communicate on a computer or typewriter years ago?

And, furthermore, why can he type his thoughts but not speak them?

Once again, the answer lies within the brain.

Remember that disjointed orchestra?

The one where each instrument plays but can’t harmonize together?

It’s the same concept preventing Watson from meaningful speech.

The brain requires little coordination to emit a sound, to echo a word, or to recite from memory a script. “That’s like a short loop within one brain area,” Young said.

To arrange thoughts in a coherent structure and articulate them vocally requires a vast network of neurons to fire simultaneously.

Watson has the thoughts in one part of his brain, grammar in another and vocal ability and muscle movements in yet another. But none of them works together.

“It’s a miracle all these things can come together efficiently and timely to allow us to do all the things we can do as typical people,” Young said. “But if there’s a disruption in our genes that slows or impedes communication between neurons, you can throw the whole thing off in some way.”

Typing still requires some coordination, but not as much as talking or writing.

Watson needs only one finger and the sleek surface of an iPad to compose his thoughts.

Even then, he struggles. Watson initially found it easier to grab his mom’s hand and guide her outstretched finger to type words rather than extend his own. He doesn’t do that much anymore but still prefers to clutch her hand while he types with his own finger.

“Not understand how hard it is for me to really type,” he wrote.

That could explain why Watson never sought out a typewriter or computer at an early age. It’s also likely why he never initiates communication now. Someone else, usually his mother, always starts the dialog. Always.

Another reason involves the social impairment common among people with autism. Even those who can readily communicate often choose not to, said Alice Shillingsburg, director of the Marcus Autism Center’s Language and Learning Clinic.

“I work with kids who speak in full sentences but never ask you personal questions,” Shillingsburg said. “They never ask what your favorite cartoon is. That tends to be what stands out.”

Watson spends his days at home with his father while Pam heads the nonprofit Mississippi Parent Training and Information Center in Jackson.

The family lives on some 40 acres just east of Magee, where Watson and Don tend the yard, pick blueberries and go fishing.

The two are close despite their lack of communication. Like many sons, Watson doesn’t express himself as freely with his father as he does with his mother.

“We’ve tried,” Don said, referring to the iPad discussions. “It just doesn’t work with us.”

On a sunny morning in late June, the guys stroll from the house to a nearby blueberry bush. Don silently gathers the ripe fruit as Watson watches. When his father has a big handful, Watson leans his head back and opens his mouth like a baby bird. Don feeds him.

They do this several more times, until Watson has his fill, and stroll on.

When it gets too hot, father and son retreat into the one-story house where Watson grew up. Now towering over his parents at 6 feet, 3 inches, the young man disappears down the narrow hall and into his tiny bedroom.

A vast collection of Dr. Seuss books fills a floor-to-ceiling shelf and spills out into a waist-high pile near the door. Watson selects one of them and returns to the living room to watch cartoons in his recliner.

It’s a leisurely lifestyle, but one that bores the 22-year-old. While most of his peers, like Roby, are in college or working, Watson is stuck at home.

“(It’s) killing me to be by myself,” he types.

He’s lonely. He wants friends who understand him, and a job — as a “data entry person.”

His parents want that for him, too, and for the first time since his autism they feel it might be possible. But it will take time and patience, and he may never achieve full independence.

Nevertheless, life for Watson and his family has improved since he started communicating.

When Watson’s grandfather, Buddy Dollar, died in September, the family used the iPad to work through the grieving process. The young man had questions about death that likely would otherwise have gone unanswered.

His parents also recently discovered Watson’s belief in God and his desire to be baptized.

Pam recalled a recent car ride during which Watson became agitated in the backseat, rocking violently and making noises. She previously had no way of deciphering his behavior. Now she can pull over and get the iPad.

“What’s wrong?” she typed on this particular occasion.

“I want to go to Wal-Mart,” Watson replied. “You just passed it.”

Pam laughed at the memory before turning pensive. How many temper tantrums could have been avoided, she wondered, if they’d been able to communicate all along.

All the misunderstandings, all the guessing games, all the grief.

“He’s had a history of having a lot of behavioral problems,” Pam explained.

They got him into frequent trouble at school and landed him at Millcreek, a center for emotionally disturbed children.

Watson attended the psychiatric day program there for four years as an adolescent.

“It was the typical teenage rebellion,” Pam said, “but he couldn’t talk back, so he used his behavior.”

Watson’s breakthrough has raised a flurry of what-ifs, but it also has validated his parents’ decision to educate him despite his outward limitations. Years of schooling taught him how to both read and spell — two skills now vital to his communication.

If the Dollars have learned anything from this experience, Pam and Donald say, it’s to never limit someone’s potential.

“Presume competence,” Pam said. “Presume they’re absorbing everything. Expose them to the world, and never give up. He was 20 years old when his big breakthrough came. It can happen.”

http://www.usatoday.com/story/news/nation/2013/07/14/autistic-man-breaks-through-the-silence/2516527/

Get Your Rock On With The AutistiX

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AUTISM ROCK BAND The AutistiX GO ON TOUR TO SPAIN

Luke Steels; Jack Duggan-Beavan; Saul Zur Szpiro

A group of 15 will travel to Spain to help The AutistiX on their first tour

A group of north London musicians who have overcome extraordinary obstacles are about to embark on their first international tour.

The members of The AutistiX, as the name suggests, all have autism, but they have not let any of their disabilities get in the way of a tour in Spain and recording their first album.

Luke Steels, 17, electric guitar and bass, Jack Beavan-Duggan, 18, electric guitar, and Saul Zur-Szpiro, 20, on the drums, practice at least once a week and have played gigs including the Beatles Day in Hastings, but this will be the first time they have gone on tour.

Saul’s mum, and band manager, Susan Zur-Szpiro, said: “They started producing their own music and creating these very beautiful, quite biographical songs.

Saul Zur-Szpiro
Saul needs help with day-to-day functions but drums for the band

“It’s not about getting the sympathy reaction, they just happen to have their disabilities which makes them interesting and quirky as an act.”

Jack, the lyricist, penned songs including The Good and Bad in All of Us and Hard to Reach and says music is about “writing songs and showing who I am”.

Carol Povey, the director of the Centre for Autism, said: “Autism is a social and communication difficulty and affects the way people interact with other people and the world around them.

“Some people will have very high support needs, no language or communicative ability and challenging behaviour, right the way through to people who have very high IQs but may struggle to relate to other people.

“You wouldn’t normally think of people working together [like The AutistiX] and I think it’s fabulous and it really blows apart most people’s expectations.”

The Camden-based group who are joined on stage by Jack’s father John, Saul’s dad Michael and musician Jim Connelly, will play three gigs with Spanish group Motxila 21 who all have Down’s syndrome between 24 and 30 May.

But The AutistiX have come a long way to get there.

John Duggan; Luke Steels; Jack Beaven Duggan;; Saul Zur-Szpiro; Michael Zur-Szpiro; and Jim Connelly
The band will play their gigs in Pamplona, Durango and Getaria during their bank holiday tour

Mrs Zur-Szpiro said: “My son could really do nothing, he was blind, he couldn’t move, he was really very low-functioning so we just took it a step at a time and he’s way beyond anyone’s expectations.

“He can’t dress himself, he can’t feed himself and can’t look after his own basic needs but he’s the drummer and it’s mostly learning through his auditory skills, he hears something and he knows it.”

Before The AutistiX set off on tour there were a lot of things to consider including the fact that they would be relocating each day.

“Change is an issue because they like the familiar and they can be thrown by anything changing”, Mrs Zur-Szpiro said.

“I’m very aware of the sensitivities and so we’re doing all the major transitions during the day so they adjust and see it [each town], each of them have a parent or carer with them so they have that continuity and we’ve looked at YouTube so they know what Motxila 21 look like.

The AutistiX performing on stage
The band does not suffer from stage fright no matter how big the crowd is

“We are embarking a little bit into the unknown and it’s going to be hard work but it should be amazing.”

As well as musical experiences there are other benefits for The AutistiX too.

The manager said: “They lack a normal peer group and this band has been amazing in providing a social network for them, they’re the centre of each others lives.

“And there’s no drinking and drugs going on, that just doesn’t happen.”

Butterflies and DemonsThe AutistiX also have a natural ability on stage which many performers might be envious of – they do not get stage fright.

Mrs Zur-Szpiro said: “Sometimes they’ve performed in front of several hundred people, but they don’t have any concept of being judged. He [Saul] loves being up on the stage and has music in every cell of his body.”

The band will play their gigs in Pamplona, Durango and Getaria and once they return to London they will be looking forward to releasing their first EP, Butterflies and Demons, which they recorded at EMI Roundhouse in February.

And although they might be a “quirky” rock band Mrs Povey, added: “The important thing is the audience is not looking at the disabilities and not looking at what they can’t do, but looking at what they can do.”

Advantage: Autism?

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This is an article from The New York Times Magazine highlighting some of the savant capabilities present in many autistics.  It is ironic that quite recently I have noted many print articles showcasing the intellectual capabilities of persons with Asperger’s Syndrome (see related post “Aspies Everywhere” for example), while the DSM-V has moved to remove Asperger’s as a discrete diagnosis.  Is this progress? I’m not so sure.  Clearly, at least most prevalently in technical areas, there is at least acknowledgement of what autistics are capable of.  I hope this is the start of a long-awaited trend. -Ed

The Autism Advantage

Thorkil Sonne and his son Lars, who has autism, at home in Ringsted, Denmark.

When Thorkil Sonne and his wife, Annette, learned that their 3-year-old son, Lars, had autism, they did what any parent who has faith in reason and research would do: They started reading. At first they were relieved that so much was written on the topic. “Then came sadness,” Annette says. Lars would have difficulty navigating the social world, they learned, and might never be completely independent. The bleak accounts of autistic adults who had to rely on their parents made them fear the future.

What they read, however, didn’t square with the Lars they came home to every day. He was a happy, curious boy, and as he grew, he amazed them with his quirky and astonishing abilities. If his parents threw out a date — Dec. 20, 1997, say — he could name, almost instantly, the day of the week (Saturday). And, far more usefully for his family, who live near Copenhagen, Lars knew the train schedules of all of Denmark’s major routes.

One day when Lars was 7, Thorkil Sonne was puttering around the house doing weekend chores while Lars sat on a wooden chair, hunched for hours over a sheet of paper, pencil in hand, sketching chubby rectangles and filling them with numerals in what seemed to represent a rough outline of Europe. The family had recently gone on a long car trip from Scotland to Germany, and Lars passed the time in the back seat studying a road atlas. Sonne walked over to a low shelf in the living room, pulled out the atlas and opened it up. The table of contents was presented as a map of the continent, with page numbers listed in boxes over the various countries (the fjords of Norway, Pages 34-35; Ireland, Pages 76-77). Thorkil returned to Lars’s side. He slid a finger along the atlas, moving from box to box, comparing the source with his son’s copy. Every number matched. Lars had reproduced the entire spread, from memory, without an error. “I was stunned, absolutely,” Sonne told me.

To his father, Lars seemed less defined by deficits than by his unusual skills. And those skills, like intense focus and careful execution, were exactly the ones that Sonne, who was the technical director at a spinoff of TDC, Denmark’s largest telecommunications company, often looked for in his own employees. Sonne did not consider himself an entrepreneurial type, but watching Lars — and hearing similar stories from parents he met volunteering with an autism organization — he slowly conceived a business plan: many companies struggle to find workers who can perform specific, often tedious tasks, like data entry or software testing; some autistic people would be exceptionally good at those tasks. So in 2003, Sonne quit his job, mortgaged the family’s home, took a two-day accounting course and started a company called Specialisterne, Danish for “the specialists,” on the theory that, given the right environment, an autistic adult could not just hold down a job but also be the best person for it.

For nearly a decade, the company has been modest in size — it employs 35 high-functioning autistic workers who are hired out as consultants, as they are called, to 19 companies in Denmark — but it has grand ambitions. In Europe, Sonne is a minor celebrity who has met with Danish and Belgian royalty, and at the World Economic Forum meeting in Tianjin in September, he was named one of 26 winners of a global social entrepreneurship award. Specialisterne has inspired start-ups and has five of its own, around the world. In the next few months, Sonne plans to move with his family to the United States, where the number of autistic adults — roughly 50,000 turn 18 every year — as well as a large technology sector suggests a good market for expansion.

“He has made me think about this differently, that these individuals can be a part of our business and our plans,” says Ernie Dianastasis, a managing director of CAI, an information-technology company that has agreed to work with Specialisterne to find jobs for autistic software testers in the United States.

For previously unemployable people — one recent study found that more than half of Americans with an autism diagnosis do not attend college or find jobs within two years of graduating from high school — Sonne’s idea holds out the possibility of self-sufficiency. He has received countless letters of thanks and encouragement from the families of autistic people. One woman in Hawaii wrote Sonne asking if she could move her family to Denmark so that her unemployed autistic son could join the Specialisterne team.

I first met Sonne, who is 52, in Delaware at a small conference he organized for parents and government officials who want to help him set up American operations over the coming year. He stood before them, sipping a cup of Dunkin’ Donuts coffee, speaking enthusiastically of his “dandelion model”: when dandelions pop up in a lawn, we call them weeds, he said, but the spring greens can also make a tasty salad. A similar thing can be said of autistic people — that apparent weaknesses (bluntness and obsessiveness, say) can also be marketable strengths (directness, attention to detail). “Every one of us has the power to decide,” he said to the audience, “do we see a weed, or do we see an herb?”

It’s an appealing metaphor, though perhaps a tougher sell in the United States, where you rarely see dandelion salad. It is also, of course, a little too simple. Over eight years of evaluating autistic adults, Sonne has discovered that only a small minority have the abilities Specialisterne is looking for and are able to navigate the unpredictable world of work well enough to keep a job. “We want to be a role model to inspire,” Sonne told me later, “but we can only hire the ones that we believe can fill a valuable role in a consultancy like ours.” In other words, he’s not running a charity. It is Sonne’s ultimate goal to change how “neurotypicals” see people with autism, and the best way to do that, he has decided, is to prove their value in the marketplace.

TDC, Thorkil Sonne’s former employer, is Specialisterne’s oldest customer. When I visited its headquarters in Copenhagen in June, it was obvious why the company finds it useful to engage autistic consultants. Whenever cellphone makers introduce a new product, there are countless opportunities for glitches. The only way TDC can be sure of catching them is to load the software onto a phone and punch the phone keys over and over again, following a lengthy script of at least 200 instructions. The work is tedious, the information age equivalent of the assembly line, but also important and beyond the capacity of most people to perform well. “You will get bored, and then you will take shortcuts, and then it is worthless,” explained Johnni Jensen, a system technician at TDC.

Steen Iversen, a Specialsterne consultant in bluejeans and a bright red polo shirt, showed me how he tackles the task. Iversen, who is 52 and has worked at TDC for four years, laid out several phones on a desk that also held his computer, two bananas, an apple and lines of lime green Post-it notes. He picked up a phone in one hand and demonstrated his technique, his thumb landing on the buttons in quick succession. But his real advantage is mental: he is exhaustive and relentless. When a script called for sending a “long text message,” Iverson keyed in every character the phone was capable of; it crashed. Another time, he found a flaw that could have disabled a phone’s emergency dialing capability, a problem all previous testers had missed. I asked Iversen how he feels at moments like that, and he gently pumped both fists in the air with a shy smile. “I feel victorious,” he said.

Over the years, Jensen has developed strategies for interacting with Iversen and the two other consultants he oversees. Trying to rush them inevitably backfires, he told me. “Sometimes I have to bite my tongue.” Jensen feels protective of the consultants and tries to shield them from the usual stresses of office work, but he is emphatic that the arrangement has endured not because he pities them but because their work is excellent. When Iversen finds a bug, he can recall similar ones from years past, saving Jensen the time and frustration of researching the problem’s history. And, Jensen says, the consultants are far more devoted to accuracy than neurotypical workers. Iversen has punched mobile-phone keys day after day, and not once has he cut a corner or even made a careless mistake.

Christian Andersen, another Specialisterne consultant, works at Lundbeck, a large pharmaceutical company. He compares records of patients who have experienced reactions to Lundbeck’s drugs, making sure the paper records match the digital ones. Errors can creep in when the reports are entered into the company’s database, and tiny mistakes could mean that potential health hazards would go undetected. So Andersen searches for anomalies, computer entry against written report, over and over, hour after hour, day after day.

Christian Andersen in his office at a pharmaceutical company in Copenhagen.

Before Andersen arrived, his boss, Janne Kampmann, had a hard time finding employees who could do the job well. Most people’s minds wander as they go back and forth between documents, their eyes skimming the typos lurking there. Andersen, however, worked without interruption the morning I visited, attentive and silent until he lifted his head and, pointing to a sheet of paper, said to Kampmann, “Why do we have a 57 instead of 30 milligrams?” Kampmann told me Andersen is one of the best quality-control people she’s ever seen.

For years, scientists underestimated the intelligence of autistic people, an error now being rectified. A team of Canadian scientists published a paper in 2007 showing that measures of intelligence vary wildly, depending on what test is used. When the researchers used the Wechsler scale, the historical standard in autism research, a third of children tested fell in the range of intellectual disability, and none had high intelligence, consistent with conventional wisdom. Yet on the Raven’s Progressive Matrices, another respected I.Q. test, which does not rely on language ability, a majority of the same children scored at or above the middle range — and a third exhibited high intelligence. Other scientists have demonstrated that the autistic mind is superior at noticing details, distinguishing among sounds and mentally rotating complex three-dimensional structures. In 2009, scientists at King’s College London concluded that about a third of autistic males have “some form of outstanding ability.”

This emerging understanding of autism may change attitudes toward autistic workers. But intelligence, even superior intelligence, isn’t enough to get or keep a job. Modern office culture — with its unwritten rules of behavior, its fluid and socially demanding work spaces — can be hostile territory for autistic people, who do better in predictable environments and who tend to be clumsy at shaping their priorities around other people’s requirements.

Most Specialisterne consultants work in the offices of the companies that use their services, but some need to operate out of Specialisterne’s more forgiving work space. Even those capable of working on site sometimes get into trouble. In one case, the company was contacted by a medical-technology company, which needed help testing new prescription-tracking software. This seemed a marvelous bit of luck, says Rune Oblom, Specialisterne’s business manager, because there was a consultant on staff interested in illnesses. Everything was going fine until a medical team arrived to try out the software, and the consultant spent the entire morning recounting to them, in detail, the medical treatments that he, his mother and the rest of his family received over the years. Another consultant was assigned to finish the software-testing job. “I told him that the doctors were not very happy and felt he was a disturbing factor,” Oblom says. “But he couldn’t see it.”

The consultant has since been moved to another company, where he has done well at his professional tasks but still misses social cues. In Denmark, there is a tradition of bringing cake to the office on Fridays, and Oblom recently learned from the on-site supervisor that the consultant happily eats cake but has never volunteered to bring one himself. Then there was the time he tasted a co-worker’s cake and pronounced it terrible. Oblom told me that he plans to tell the consultant that he has to bring in cake now and then — and he will do it, Oblom predicts, without understanding the reason — but he’s not going to encourage the consultant to be more polite. The concept of socially mandated dishonesty would mystify him, Oblom said, so the other employees will just have to deal with it.

Specialisterne tries to anticipate, or at least mitigate, conflicts by assigning every consultant to a neurotypical coach. The coach checks in with the consultants regularly, monitoring their emotional well-being and helping them navigate the social landscape of the office. Henrik Thomsen, a jolly man who runs Specialisterne in Denmark while Sonne works on international expansion, told me about one consultant who is fascinated by train schedules. Severe storms can disrupt the trains around Copenhagen, and if the consultant’s train was delayed, he would start the day with a tour of his colleagues at the Specialisterne office, telling each how the commute played out, station by station. Sometimes another consultant would get annoyed and tell him to “cut the crap,” Thomsen says, “and then the real fun would begin.” So now Thomsen listens to the radio as he drives in, taking mental note of potential delays. When Thomsen arrives at work, he invites the consultant into his office first thing, listens to the day’s commuting story and then asks him to please get to work.

Specialisterne’s headquarters occupy part of a three-story complex in a Copenhagen suburb. Sonne showed me around the building: in addition to the consulting business, there is a nonprofit focused on spreading the Specialisterne business model, and a small school for people on the autism spectrum in their late teens and early 20s. In the largest room, boxes of Legos are stacked against one wall, and a pair of long, waist-high tables for Lego activities occupy the center, under a string of halogen lights.

A group session at the Lego Lounge in the Specialisterne school in Denmark

When Sonne started the company, one of his biggest challenges was determining who would be able to thrive as a tech consultant in an office environment. A traditional interview was clearly not going to do the trick, and he had to think of other ways to identify marketable strengths in people who have difficulty communicating.

Lars had always enjoyed Legos, and talking to other parents, Sonne heard stories about how the toy bricks brought out remarkable, hidden abilities. “For many parents,” Sonne told me, “this was one of the few moments when they could be proud of their children.” So he decided to ask potential employees to follow the assembly directions included in the Lego Mindstorms kits and watch them build the robots.

This turned out to be so revealing that assessing job skills in the autistic population has itself become part of Specialist­erne’s business, with local government sending about 50 people a year to the company for five-month evaluations. (Specialisterne considers some for consulting jobs; others might end up doing clerical work, mowing lawns or other tasks for municipalities.) The Specialisterne evaluators place the candidates in groups for part of the time to see how well they work in teams, in addition to assessing the skills (reasoning, following directions, attending to details) that are naturally on display in a Mindstorms session. The assignments also reveal how a person handles trouble. More than once a candidate has become derailed because a Lego piece does not match the shade of gray depicted in the manual. Yet it is also not uncommon for a candidate to notice a struggling partner, stop and patiently explain how to get back on track.

The Specialisterne school uses Legos, too. Frank Paulsen, a red-haired man with a thin beard who is the school’s principal, told me about a session he once led in which he handed out small Lego boxes to a group of young men and asked them to build something that showed their lives. When the bricks had been snapped together, Paulsen asked each boy to say a few words. One boy didn’t want to talk, saying his construction was “nothing.” When Paulsen gathered his belongings to leave, however, the boy, his teacher by his side, seemed to want to stay. Paulsen tried to draw him out but failed. So Paulsen excused himself and stood up.

The boy grabbed Paulsen’s arm. “Actually,” he said, “I think I built my own life.”

Paulsen eased back into his seat.

“This is me,” the boy said, pointing to a skeleton penned in by a square structure with high walls. A gray chain hung from the back wall, and a drooping black net formed the roof. To the side, outside the wall, two figures — a man with a red baseball cap and a woman raising a clear goblet to her lips — stood by a translucent blue sphere filled with little gold coins. That, the boy continued, represented “normal life.” In front of the skeleton were low walls between a pair of tan pillars, and a woman with a brown pony tail looked in, brandishing a yellow hairbrush. “That is my mom, and she is the only one who is allowed in the walls.”

The boy’s teacher was listening, astonished: In the years she’d known him, she told Paulsen later, she had never heard him discuss his inner life. Paulsen talked to the boy, now animated, for a quarter of an hour about the walls, and Paulsen suggested that perhaps the barriers could be removed. “I can’t take down the walls,” the boy concluded, “because there is so much danger outside of them.”

In June, Sonne announced the opening of a United States headquarters in Wilmington, Del. The state’s governor, Jack Markell, was there, as was a representative from CAI, the company that is Specialisterne’s first real partner in the United States. The company says it plans to begin recruiting and training autistic software testers in Delaware next month, and if all goes well, it will expand the program to other states. Specialisterne is also talking with Microsoft about setting up a pilot program in Fargo, N.D., where it has a large software-development operation.

Tyler Cowen, an economist at George Mason University (and a regular contributor to The Times), published a much-discussed paper last year that addressed the ways that autistic workers are being drawn into the modern economy. The autistic worker, Cowen wrote, has an unusually wide variation in his or her skills, with higher highs and lower lows. Yet today, he argued, it is increasingly a worker’s greatest skill, not his average skill level, that matters. As capitalism has grown more adept at disaggregating tasks, workers can focus on what they do best, and managers are challenged to make room for brilliant, if difficult, outliers. This march toward greater specialization, combined with the pressing need for expertise in science, technology, engineering and mathematics, so-called STEM workers, suggests that the prospects for autistic workers will be on the rise in the coming decades. If the market can forgive people’s weaknesses, then they will rise to the level of their natural gifts.

“Specialization is partly about making good use of the skills of people who have one type of skill in abundance but not necessarily others,” says Daron Acemoglu, an economist at M.I.T. and co-author of “Why Nations Fail.” In other words, there is good money to be made doing the work that others do not have the skills for or are simply not interested in.

As Sonne tries to build up his business in the United States, though, he faces practical challenges. For one thing, in Denmark, the government helps cover some of the additional expense of managing autistic workers, and it pays Specialisterne so it can give its employees full-time salaries even though they only work part time. Specialisterne pays its consultants in Denmark between $22 and $39 an hour, a rate negotiated with unions, and in Delaware it plans to start with salaries between $20 and $30 an hour. And while two Delaware charitable foundations have pledged $800,000 to Specialisterne, Sonne estimates that it will take $1.36 million, and three years, for the business to become self-sustaining.

Another challenge involves expectations. A new stereotype of autistic people as brainiacs, endowed with quirky superminds, is just as misguided as the old assumption that autistic people are mentally disabled, Sonne says. Autistic people, like everyone else, have diverse abilities and interests, and Specialisterne can’t employ all of them. Most people Specialisterne evaluates in Denmark don’t have the right qualities to be a consultant — they are too troubled, too reluctant to work in an office or simply lack the particular skills Specialisterne requires. The company hires only about one in six of the men and women it assesses.

April Schnell, who is organizing a Specialisterne effort in the Midwest and has an autistic son, told me that she traveled to Copenhagen for a conference organized by the company for their volunteers from around the world. One day, she and the others were given the Mindstorms challenges used to assess candidates. As she struggled to solve one of the more difficult ones, she realized that her son, Tim, who is 15, would find the work uninteresting and probably too difficult: Specialisterne is not likely to be the answer for him. “I was just very aware, there is a gap here,” she said. “My heart was a little sad.”

One Friday evening, Sonne drove me to his house southwest of Copenhagen, navigating through whipping rain and the last clots of rush-hour traffic. Lars was waiting at the door to welcome us. Now 16, Lars evokes a Tolkien elf — thin and blond with exceptionally pale skin. He was outgoing from the start, eager to give me a tour of the house, yet he only glanced at my face.

Lars has the sweet demeanor of a much younger boy. Several times he affectionately rubbed his father’s head, the hair a short thin fur, calling the bald spot “Mr. Moon.” He gushed about trains, and at dinner Annette gently told him that we might not want to hear too much more about international conventions on track signals. I played Lars in a round of speed chess in the living room. There was never much doubt about the outcome, but at one point he issued an earnest warning: “Take care to not weaken your king’s position unnecessarily.” It was too late. After we put the pieces away, I complimented him on his final moves — an elegant and lethal attack with rooks, a bishop and a knight — and he did a balletic twirl, arms out. I joked with his family about how crushed I felt in defeat, and Lars walked over and put a consoling hand on my shoulder. Perhaps, I suggested to Lars, I would be allowed a rematch? “No,” he said simply.

When I asked Lars what he thought about his father’s company, he said he has played with the Mindstorms robots but does not see himself working there. “I want to be a train driver,” Lars announced. “It is the country’s most beautiful job. You get to control a lot of horsepower. Who wouldn’t want to do that?”

At the outset, it was Thorkil’s aim to persuade Danish tech companies to hire his autistic employees. Now he wants all kinds of companies, all over the world, to learn from what Speecialisterne is doing. He figures that if he is successful, then maybe a national railway will consider hiring a candidate as seemingly unlikely as his son, as long as he has the right skills.

Certainly he has seen how transformative getting the right job can be for the autistic workers themselves. Before coming to Specialisterne, Iversen, who works at TDC, had not had a job for 12 years and spent the days sleeping and nights surfing the Internet. Niels Kjaer once worked as a physicist, receiving his diagnosis only after becoming clinically depressed when he didn’t get an academic job. When he came to Specialisterne, where he works on improving technology that grades eggs as they pass by on a conveyor belt, he was on sick leave from a job driving a cab.

Christian Andersen, who works at Lundbeck, the pharmaceutical company, was bullied and beaten for years as a schoolboy. He received his diagnosis at age 15 only because, fearing he might be suicidal, he checked himself into a hospital. After high school — inspired by a Hemingwayesque teacher who regaled his students with tales of outdoor exploits — Andersen tried a vocational school for landscaping. But he was overwhelmed by the requirement that he learn to drive. He tried another tech school but flailed, became depressed and had a breakdown in 2005. Andersen was living at home without prospects, playing video games. He couldn’t even land a job at a grocery store. Later that year, his parents encouraged him to apply to Specialisterne.

I joined Andersen one morning on his commute to Lundbeck’s headquarters across town. Riding on a yellow city bus, we talked about video games. He still loves Halo; Diablo 3 he finds frustrating. “You turn a corner and then — splat! — you are dead.” As we drew closer to the office, our conversation drifted to his job. He spoke with surprising insight about the psychological importance of work. “I have grown very much as a person,” Andersen told me. “I have become more confident and self-assured.” The job allowed him to move out of his parents’ house and into an apartment. After a while, Andersen informed me, he “started using body language.” It’s not something anyone taught him. He just watched people, he said, and “monkey see, monkey do.”

When he started at Lundbeck, he was constantly anxious because he dreaded making an error. Now the stress grips him far less often and is readily dispelled with a phone call to a coach at Specialisterne. He admits to being proud, having come so far. He was touched to be invited recently to join his department for some after-work bowling. But he doesn’t spend a lot of time thinking about these aspects of his employment anymore. “Of course it feels good,” Andersen said, “but there is such a thing as ‘here we go again.’ ” It’s only a job, after all.

http://www.nytimes.com/2012/12/02/magazine/the-autism-advantage.html?pagewanted=1&_r=0