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 Kai was also socially odd: Sometimes he was withdrawn, but at other times he would dash up to strangers and hug them.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 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.
I’m stoked about this young man who with a little help and creativity is launching a small business. One of the cool things about Brad’s startup is that it is a creative way to support someone with a significant disability to offer their unique contributions in the community. Unfortunately people with disabilities still live on the margins, but if we begin to see an individual’s unique abilities and figure out creative ways for them to offer those, then our communities will become even more vibrant and interesting. Hats off to Brad and his friends and family who helped tell his story and launch this cool enterprise.
Brad is 25 years old, and has autism. He can’t speak or read, but he has a knack for building things. He can understand any diagram or blueprint, no matter how complicated. For brad, putting together furniture is as easy as putting together a lego set. Brad’s family helped him start this business so that Brad could do what he’s best at, feel a sense of accomplishment, and be an active part of the community.
But Jack had been used to having his own home wrecked.
He lived with his autistic teenage son, Billy, who had grown up as a mild-mannered boy lost in the bewildering maze of his affliction.
But as Billy reached full-muscled puberty, he was beaten by a teacher in now-defunct Beach Channel High School. Billy’s reaction was to eat uncontrollably until he hit 280 pounds. His anger grew in scary proportion.
“Some days, Billy would just suddenly go berserk and destroy the whole house,” Nacmias said. “The cops would have to come to restrain him. My wife and I would clean up the mess and weep. Not for ourselves. For him. For Billy. We didn’t know how to help him.”
Jack and his wife, Jane, loved Billy as much as their other kids, James and Danielle. But Billy had reached an age when keeping him at home was counterproductive to everyone’s quality of life — especially his own.
The Nacmiases sued the city.
As part of the settlement, the city offered to let them pick an institution of their choosing to try to rectify the harm done to Billy. The Nacmiases searched for the right place, where experts might rechannel Billy’s rage.
A few days after Thanksgiving, I stopped by the Nacmias and Son Sunoco station on Coney Island Ave. for my six-month tuneup. The usually jaded Jack Nacmias was a bouquet of smiles. I asked for the same high-octane gas he was on.
Billy Nacmias as Scrooge in ‘A Christmas Carol,’ a role which contributed to the discipline that led to his dramatic weight loss.
“I believe in miracles,” he said. “My son Billy has been saved.”
Nacmias started talking as fast as a tobacco auctioneer. Billy had been placed in the Center for Discovery in the Catskills. He said professionals there had transformed his overweight, unhappy, often violent son into a trim, joyful and productive young man.
Jack whipped out remarkable before-and-after photos.
“When we visited him, Billy rushed out and hugged us and proudly showed us the house he shared with four other kids on this 1,000- acre paradise,” Jack said. “There’s a full-time nurse, all kinds of dedicated counselors, and he works with egg production in the henhouse, with horses and sheep. He dropped from 280 pounds to 168 pounds, and he’s the trail leader on team hikes. He’s also studying drama to play Scrooge in ‘A Christmas Carol.’ ”
Jack is a grizzled Brooklyn grease monkey, not prone to sappy displays of emotion. But as he talked about his son, he wiped a damp eye. “On Thanksgiving, we took Billy to my cousin’s house and he ate with perfect table manners, using a knife and fork,” Jack says. “Billy ate responsibly, and when he was done, he asked if he could be excused.”
Billy Nacmias found a passion for the stage — among other things — at the Center for Discovery in the Catskills.
Nacmias said the Center for Discovery is equipped with state-of-the-art technology and programs for autistic kids like Billy.
“The Center for Discovery uses a holistic approach,” says spokesman Loren Riegelhaupt. “All the food the students eat here is organic, farm fresh. They also work. As they lose weight and detoxify from chemical additives, they tend to calm down and sleep much, much better and act out less. They also can focus and learn more. In his 18 months here, Billy has gone through an astounding transformation. We’re thrilled with his success.”
Nacmias is thrilled, too.
“Listen, I use tools, parts, and labor to make a car run,” he says. “But these people have tools and counselors to perform human miracles. They have given my son Billy a life and given my family more happiness than you could ever know.”
The only sad part of the story is that Billy will soon reach the age of 21, when he must transfer out of the center.
“But his progress has been so remarkable that the counselors are trying to see if they can actually hire him to work with new kids like he was when he first arrived,” his dad says. “If they can, he’ll have his place in life.”
On Wednesday, Jack and his family drove up to see Billy in “A Christmas Carol.”
“I’m a Jew,” said Jack. “But here’s my son Billy, who used to wreck the house, memorizing lines and performing in the greatest Christmas story ever written. When I saw him playing Scrooge on stage, I was in tears with pride. It was the greatest gift our family has ever received. Billy has found meaning in life. Now I understand what Tiny Tim means when he says, ‘God bless us, everyone.’ ”
Local parents have defended the bullying of a 13-year-old with Autism (WhoTV.com)
A 13-year-old autistic boy has been punched, teased and had his condition mocked in online videos by his peers. But the parents of the accused children say they were justified in bullying the Iowa teen.On Monday, WhoTV.com ran a story about how the classmates of Levi Null had posted a video online showing Null suffering from symptoms of Asperger syndrome, a form of autism. In the video, classmates taunt Null, and teachers in the classroom appear to turn a blind eye to the behavior.
“I would say three-fourths of this stuff he brings on himself and probably a fourth of it is bullying that shouldn’t be going on,” said Levi Weatherly, father of the teen accused of posting the video online.
The school’s principal wrote Null’s mother an email saying the behavior documented in the video does not amount to bullying. Nonetheless, two of the students were disciplined and the video was reportedly deleted.
In a video interview with the station, Principal Josh Ehn actually said it is the students’ responsibility to handle cases of bullying. “We try our best to educate our staff, to educate our students to react to the cases, to investigate the cases we have,” Ehn said. “But ultimately, it’s got to come down to the kids to take ownership for this and to stand up for the kids who can’t stand up for themselves.”
The principal’s decision was defended by School Board President Bob Lepley, who told the station, “I stand by our principal. … According to his investigation I’ll have to stand by him.”
So why would the principal, the school board president and a number of parents defend the alleged bullying?
“He called my nephew a nasty name, and my nephew Cole cocked (sic) him in the mouth,” resident Jamie Harrison wrote to the station. “I’m proud of my nephew for doing that.”
“This kid has done things to get people mad that I think he could probably control,” added resident Nate Goof.
Levi’s mother, Dawn Simmons, says that she herself has even been targeted by some of the parents since complaining to the school about the video.
“It’s been a very frustrating day for all of us,” she said.
However, Simmons told the station that two of the students have since apologized to Levi, saying they didn’t realize how their actions had affected him.
If you are the parent of an autistic child, you may be surprised to hear that you are not actually living. Yes, I’m sure it’s a shock, but you can find this and many other startling statements about autism in a recent article written by Suzanne Wright, the co-founder of Autism Speaks.
According to Wright, families with an autistic child, “… are not living. They are existing.” She conjures a world in which “we’ve for the most part lost touch with 3 million American children” who are autistic. And she claims that for families with autistic children, “Life is lived moment-to-moment. In anticipation of the child’s next move. In despair. In fear of the future.”
The world that Wright presents is a fantasy. Yes, autistic people face challenges, some of them severe, but to present their lives as nothing more than unrelenting tragedy and despair is simply dishonest. And stirring up fear of and pity for autistic people doesn’t actually do anything to help them live lives that are far more nuanced than Wright would have it.
Given the disdain that Wright’s fantasy world shows toward autistic lives, you might not expect Autism Speaks to be a funder of one of the best recent support programs for autistic children. And yet, that’s exactly what happened with Keeping it Real, a website partially funded by a Family Services Community Grant from Autism Speaks. In contrast to Wright’s vision, this site shows how the lives of autistic children can be improved — with the help of autistic adults. Keeping it Real has something to teach its funder.
The site was developed in part by Lauren Hough, Kristie Koenig, and Aaron Lanou of New York University’s Steinhardt ASD Nest Support Project, which provides training and on-site support for professionals working in the ASD Nest program, New York City’s inclusion program for autistic students. Keeping it Real offers lesson plans, activities, and video clips for educators, therapists, and kids on the autism spectrum.
According to Hough, “We wanted to have strength-based modules that we could use to support our middle school students with autism. We were interested in activities and materials that would empower our students and help them find their strengths and voices.”
But to create those materials, the ASD Nest Support Project did not turn only to education professionals. As NYU’s Koenig explains, “True partnerships between academics, professionals and autistic adults will be the way to improve services and supports for all autistic individuals and the autistic voice has to be central.”
For that reason, to create the website, NYU partnered with three autistic adult self-advocates: Jesse Saperstein, who developed an anti-bullying curriculum; Dr. Stephen Shore who helps students recognize and build on their strengths; and Zosia Zaks, who teaches self-advocacy. (Full disclosure: I am partnering with the NYU faculty and the self-advocates on an unrelated autism project.)
Zaks, who provides counseling services to autistic people and their families, learned the importance of self-advocacy from personal experience. “I had very little self-awareness when I was a teenager,” he said. “It’s not just about challenges. I had lots of strengths too, but no language. I learned to advocate for myself only by trial and error. But that took up a lot of energy and I missed out on so many opportunities.”
To help autistic children learn from his experience, Zaks created materials explaining what self-advocacy is and video examples of people advocating for themselves both at school and at work. Zaks believes that self-advocacy is a vital skill because, “The Americans with Disabilities act is a self-advocacy law. Once you are an adult, it is your responsibility to ask for and to arrange the accommodations you need to work or to live in the community.” And, as Zaks points out, self-advocacy is not about opting out of the community, but rather opting in. As he puts it:
Let’s say you have a sensory issue at work with the intense overhead lights. If you don’t even know what sensory issues are in general, and if you have no idea how to manage your specific sensory issues, you’re going to encounter huge barriers to success. Advocacy skills enable you to be proactive. What do you need to get back to work?
Like Zaks, Jesse Saperstein came to an interest in bullying through personal experience. Saperstein, the author of a memoir about life with Asperger’s, says, “A lot of what I do is cathartic and my curriculum is designed to give students what I needed as a young child and what would have made a difference.”
Interestingly, Saperstein’s personal experiences include not only an extensive history of being bullied, but also an example of when he bullied a less-popular student. Having been both victim and perpetrator, Saperstein brings expertise to Keeping it Real lessons on cyber bullying, blaming the victim, and bystanders.
In addition to his work for Keeping it Real, Saperstein speaks about bullying at schools and other organizations. He notes, “My presence is the first time the students are seeing an adult version of their fellow classmates who are often isolated or made fun of on a daily basis.” To show them what life as an autistic adult can be like, Saperstein designs his work “to flaunt my eccentricities, and I typically show off silly props like a paddleball, cup-and-ball toy, and bouncy balls.” He believes that “students are not given enough credit for their innate compassion. They simply need enough resources to promote this new consciousness.”
Stephen Shore’s work on Keeping it Real is only one of the many autism projects on which he works. An Assistant Professor of Special Education at Adelphi University, Shore openly discloses being on the autism spectrum. He comments, “Increasingly, I see individuals with autism achieving great success, fulfillment, and productivity when encouraged to follow their strengths — to the point of becoming regional, national, and sometimes worldwide experts in their area of interests.”
The work of Saperstein, Shore, Zaks, and other autistic self-advocates is inspiring. And if Autism Speaks was best known for partnering with autistic adults and funding projects like Keeping it Real, it could be an inspiring organization. Unfortunately, whatever good work Autism Speaks did in this instance is completely undermined by the tone-deaf words of Suzanne Wright. Even worse, Autism Speaks has a long history of excluding autistic voices and promoting fear and pity of autism.
An organization with the resources of Autism Speaks that was focused on working with the autistic community could fund countless projects like Keeping it Real. Rather than dismissing the lives of autistic children as hopeless, such an organization could partner with self-advocates to offer important resources that would help autistic children develop vital skills they need to make their way in the world.
Sadly, though, such an organization is currently as much a fantasy as Wright’s despair-filled world. Autism Speaks remains an organization largely opposed by the very community it claims to serve.
Fortunately, we have Keeping it Real — a site that stands as a rebuke to the founder of one of its funders. It’s an odd position to be in, but I’m glad the site is there. It presumes that autistic children have strengths, and it sets out to build on them. It does so with the best resource available to children on the autism spectrum — autistic adults. Their work will keep it real and make it better.
Isaiah Forte, 9, flashes a brilliant smile from the horse he’s riding. Diagnosed at 2 with autism, Forte for years had difficulty communicating and connecting with others. But then the little boy met a smallish chestnut mare at the HorseAbility Center for Equine Facilitated Programs in Westbury, N.Y., and everything started to change.
“We struggled to find a breakthrough,” Isaiah’s dad, Rick Forte, told TODAY, tears welling up in his eyes. “HorseAbility . . . really gave him confidence. That, to me, was like his coming out party. That was awesome.”
The little boy, who plays classical music and draws, may have had trouble connecting with people, but with the little mare, everything came naturally.
“Immediately Isaiah took to the horse,” said his mom, Dianne Forte.
Isaiah’s parents recognized early that he was not developing normally.
“He didn’t respond to his name,” Dianne Forte said. “He wasn’t sitting up. His core strength was poor. There was a lot of tantrumming because his expressive language was poor. His older brother Rashad was diagnosed with autism when he was 4. So we kind of knew what to look for.”
Barbara Hotchkin, a certified therapeutic riding instructor and lesson manager at the HorseAbility center, said the group provides therapeutic horseback riding services to children and adults with special needs.
Isaiah obviously has no problem talking to the mare as he leads her in the riding ring. “Ginger,” he calls out. “Walk please.” Up on Ginger’s back, he gives the command to speed up. “Trot please,” he says firmly, as they take off at a good clip with a therapist holding on to the bridle and another with a hand on Isaiah’s leg to provide support.
The impact of the little mare has been felt far beyond the riding ring. His teachers see the change in his class work.
“He’s now able to focus better on reading,” said Caroline Farkas, a special education teacher at the Davison Avenue School. “With a child like Isaiah, it’s imperative that you go beyond the four walls of the classroom. I just see horses are helping him in the classroom.”
Isaiah has even competed and won ribbons at a big horse show on Long Island in a class for riders with disabilities.
“His classmates know him as ‘Isaiah who won the Hampton Classic,’” Farkas added.
While it’s clear that riding has helped bring Isaiah out of his shell, it is unclear how it stacks up against other therapies for kids with autism.
There have been a few recent studies looking at the impact of “hippotherapy” on autistic kids, but they were small and researchers used parental reports, rather than expert evaluation, to judge the magnitude of the effects, said David Mandell, director of the center for mental health policy and services research at the University of Pennsylvania and associate director for the Center for Autism Research at The Children’s Hospital of Philadelphia.
“To date, there is no rigorous study suggesting that horseback riding per se is particularly beneficial,” Mandell said, adding that there has been research showing that contact with animals can reduce anxiety in all children.
Mandell would rather see parents with limited resources put their money into proven autism treatments.
The Forte family doesn’t need scientific studies to convince them of the benefit to their son.
“In just these few short years, the progress I’ve witnessed is monumental,” Dianne Forte said. “Isaiah can be absolutely anything he wants to be.”
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.
More than 48,000 runners took part in the New York City Marathon Sunday morning, and all ran for their own reasons. For identical twins Alex and Jamie Schneider, who are 23 years old and participating in their first New York marathon, running is a way to connect with a world they can’t communicate with otherwise. The twins are severely autistic, and they don’t speak. But when the boys were younger, their parents noticed how much Alex and Jamie loved to run, and now the Schneider family finds more joy in running than in anything else. It’s their chance to bond.
Alex and Jamie, who have run more than 130 races, both run with guides to help them navigate the crowds on race day. Alex runs with his coach, Kevin McDermott, and is hoping to beat his personal best marathon time of 3:23, set in Boston this year. Jamie runs with his dad, Allan. “I’ll explain to people, there’s not a lot I can share with him, but when we’re running, it’s an unspoken language,” Allan Schneider told Good Morning America.