Tuesday, August 5, 2014
9% of Kids Recover from Autism?!
I am posting this for encouragement, and if you read further you have to promise you won’t use this as a tool to feel guilty about what your child may not have accomplished. We are all doing the best we can, so let’s celebrate the 9% who are doing better and pray that they are providing the knowledge we need to help the other 91%!
The Kids Who Beat Autism
By RUTH PADAWER
JULY 31, 2014
Mark Macluskie, 16, who is no longer autistic.
At first, everything about L.'s baby boy seemed normal. He met every developmental milestone and delighted in every discovery. But at around 12 months, B. seemed to regress, and by age 2, he had fully retreated into his own world. He no longer made eye contact, no longer seemed to hear, no longer seemed to understand the random words he sometimes spoke. His easygoing manner gave way to tantrums and head-banging. “He had been this happy, happy little guy,” L. said. “All of a sudden, he was just fading away, falling apart. I can’t even describe my sadness. It was unbearable.” More than anything in the world, L. wanted her warm and exuberant boy back.
A few months later, B. received a diagnosis of autism. His parents were devastated. Soon after, L. attended a conference in Newport, R.I., filled with autism clinicians, researchers and a few desperate parents. At lunch, L. (who asked me to use initials to protect her son’s privacy) sat across from a woman named Jackie, who recounted the disappearance of her own boy. She said the speech therapist had waved it off, blaming ear infections and predicting that Jackie’s son, Matthew, would be fine. She was wrong. Within months, Matthew acknowledged no one, not even his parents. The last word he had was “Mama,” and by the time Jackie met L., even that was gone.
In the months and years that followed, the two women spent hours on the phone and at each other’s homes on the East Coast, sharing their fears and frustrations and swapping treatment ideas, comforted to be going through each step with someone who experienced the same terror and confusion. When I met with them in February, they told me about all the treatments they had tried in the 1990s: sensory integration, megadose vitamins, therapeutic horseback riding, a vile-tasting powder from a psychologist who claimed that supplements treated autism. None of it helped either boy.
Together the women considered applied behavior analysis, or A.B.A. — a therapy, much debated at the time, that broke down every quotidian action into tiny, learnable steps, acquired through memorization and endless repetition; they rejected it, afraid it would turn their sons into robots. But just before B. turned 3, L. and her husband read a new book by a mother claiming that she used A.B.A. on her two children and that they “recovered” from autism. The day after L. finished it, she tried the exercises in the book’s appendix: Give an instruction, prompt the child to follow it, reward him when he does. “Clap your hands,” she’d say to B. and then take his hands in hers and clap them. Then she would tickle him or give him an M&M and cheer, “Good boy!” Though she barely knew what she was doing, she said, “he still made amazing progress compared with anything he’d gotten before.”
Impressed with B.'s improvement, both families hired A.B.A. specialists from the University of California, Los Angeles (where A.B.A. was developed), for three days of training. The cost was enormous, between $10,000 and $15,000, covering not only the specialists’ fees but also their airfare and hotel stays. The specialists spent hours watching each boy, identifying his idiosyncrasies and creating a detailed set of responses for his parents to use. The trainers returned every couple of months to work on a new phase, seeking to teach the boys not just how to use language but also how to modulate their voices, how to engage in imaginative play, how to gesture and interpret the gestures of others. The families also recruited and trained people to provide A.B.A. to their sons, so each boy received 35 hours a week of one-on-one therapy.
The specialists taught the parents that if their child wanted something, they should hand it to him — but should not let go until he looked at them. Within a month, B. was looking at people when he asked them for something, having learned it was the only way to get what he wanted. Within four months, he was looking at people even when he wasn’t soliciting help. Soon he learned to point to things he desired, a skill that required weeks of lessons. Once B. understood the power of pointing, he no longer pulled his mother to the refrigerator and howled till she happened upon the food he wanted; now he could point to grapes and get grapes. “Between the time he was age 1 and almost 3,” L. said, “I remember only darkness, only fear. But as soon as I figured out how to teach him, the darkness lifted. It was thrilling. I couldn’t wait to get up each morning and teach him something new. It wasn’t work at all. It was a huge, huge relief.” Soon B. began to use language to communicate, albeit inventively at first. One time when B. pointed to the grapes in the fridge, L. took them out, plucked them off the stem and handed them to him — at which point he started screaming. He threw himself on the ground, flailing in misery. L. was baffled. He had clearly pointed to the grapes. What had she misunderstood? Why were his tantrums so frustratingly arbitrary?
Suddenly, B. pleaded: “Tree! Tree!” It hit her: He wanted the grapes still attached to the stem. He wanted to pull them off himself! “It was like, Oh, my god, how many times have I thought his tantrums were random, when they weren’t random at all? I felt so bad for him: What other things have you wanted that you couldn’t tell me?”
After that, B.'s language blossomed quickly. By the time he finished kindergarten, he was chatty and amiable, though he remained socially awkward, hyperactive and unyieldingly obsessed with the animal kingdom — he knew every kind of dinosaur, every kind of fish. Whatever his preoccupation of the moment, he would talk about it incessantly to anyone who would, or wouldn’t, listen. L. made three small laminated coupons, and each morning, she’d tuck them into B.'s front pocket and remind him that whenever he talked about his favorite animal or noticed kids walking away or changing the subject, he should move a coupon to his other pocket. Once he ran out of coupons, she told him, he had to find other things to talk about for the rest of the day. Whether because of the coupons or maturation or something else, B.'s monologues stopped by second grade. Around the same time, his fixations eased. B.'s doctor concluded that the last vestiges of his autism were gone; he no longer met the criteria, even in its mildest form.
L. was ecstatic, but she was also plagued by guilt. Though Jackie’s son received the same treatments as B., he had made no such progress. Matthew still could not talk. He remained uninterested in other children and most toys. And despite efforts to teach him, Matthew’s communication remained extremely limited: When he squealed loudly, he was happy. When he threw up — which for a year he did daily — his parents concluded that he was distressed, after a doctor assured them that there wasn’t anything physically wrong with him.
“Jackie did everything for him,” L. told me, her voice filled with angst. “Everything. She tried just as hard as I did. She hired the same people, did the same work. . . . " Her voice trailed off. She was sure that the behavioral therapy had allowed her to reclaim her son, but she could not understand why it had not done the same for Matthew.
Autism is considered a lifelong developmental disorder, but its diagnosis is based on a constellation of behavioral symptoms — social difficulties, fixated interests, obsessive or repetitive actions and unusually intense or dulled reactions to sensory stimulation — because no reliable bio-markers exist. Though the symptoms of autism frequently become less severe by adulthood, the consensus has always been that its core symptoms remain. Most doctors have long dismissed as wishful thinking the idea that someone can recover from autism. Supposed cures have been promoted on the Internet — vitamin shots, nutritional supplements, detoxifiers, special diets, pressurized rooms filled with pure oxygen and even chelation, the potentially dangerous removal of heavy metals from the body. But no evidence indicates that any of them can alleviate any of the core symptoms of autism, let alone eradicate it.
The idea that autistic people could recover first took hold in 1987, after O. Ivar Lovaas, the pioneer of A.B.A., published a study in which he provided 19 autistic preschoolers with more than 40 hours a week of one-on-one A.B.A., using its highly structured regimen of prompts, rewards and punishments to reinforce certain behaviors and “extinguish” others. (An equal number of children, a control group, received 10 or fewer hours a week of A.B.A.) Lovaas claimed that nearly half the children receiving the more frequent treatment recovered; none in the control group did. His study was greeted with skepticism because of several methodological problems, including his low threshold for recovery — completing first grade in a “normal” classroom and displaying at least an average I.Q. The therapy itself was also criticized, because it relied, in part, on “aversives”: sharp noises, slaps and even electric shocks. By the 1990s, after a public outcry, Lovaas and most of his followers abandoned aversives.
While subsequent studies did not reproduce Lovaas’s findings, researchers did find that early, intensive behavioral therapy could improve language, cognition and social functioning at least somewhat in most autistic children, and a lot in some. A few studies claimed that occasionally children actually stopped being autistic, but these were waved off: Surely, either the child received a misdiagnosis to begin with or the recovery wasn’t as complete as claimed.
In the last 18 months, however, two research groups have released rigorous, systematic studies, providing the best evidence yet that in fact a small but reliable subset of children really do overcome autism. The first, led by Deborah Fein, a clinical neuropsychologist who teaches at the University of Connecticut, looked at 34 young people, including B. She confirmed that all had early medical records solidly documenting autism and that they now no longer met autism’s criteria, a trajectory she called “optimal outcome.” She compared them with 44 young people who still had autism and were evaluated as “high functioning,” as well as 34 typically developing peers.
In May, another set of researchers published a study that tracked 85 children from their autism diagnosis (at age 2) for nearly two decades and found that about 9 percent of them no longer met the criteria for the disorder. The research, led by Catherine Lord, a renowned leader in the diagnosis and evaluation of autism who directs a large autism center and teaches at Weill Cornell Medical College, referred to those who were no longer autistic as “very positive outcome.”
Autism specialists hailed the reports. “Those of us who work closely with children with autism,” says Geraldine Dawson, a psychologist and researcher at Duke University’s department of psychiatry and the Institute for Brain Sciences, “have known clinically that there is this subgroup of kids who start out having autism and then, through the course of development, fully lose those symptoms — and yet people always questioned it. This work, in a very careful and systematic way, shows these kids exist.” She told me that she and many of her colleagues estimated that 10 percent or more of their autistic patients no longer had symptoms.
The findings come at a time when the number of autism cases nationwide appears to be climbing rapidly. No nationally representative study of autism’s prevalence exists, but the Centers for Disease Control and Prevention’s most recent study of 11 communities in the United States found that one in 68 children has autism, up from one in 88 two years earlier. Experts attribute much of that increase to greater awareness of the disease and its symptoms, as well as to broader diagnostic criteria. Some researchers say additional factors — among them toxic substances and older parental age — may contribute to the rise as well. Scientists suspect that what is called autism may actually be an array of distinct conditions that have different genetic and environmental etiologies but happen to produce similar symptoms. If true, it could help explain why some children progress so much while others don’t.
The research by Fein and Lord doesn’t try to determine what causes autism or what exactly makes it go away — only that it sometimes disappears. There do, however, seem to be some clues, like the role of I.Q.: The children in Lord’s study who had a nonverbal I.Q. of less than 70 at age 2 all remained autistic. But among those with a nonverbal I.Q. of at least 70, one-quarter eventually became nonautistic, even though their symptoms at diagnosis were as severe as those of children with a comparable I.Q. who remained autistic (Fein’s study, by design, included only people with at least an average I.Q.) Other research has shown that autistic children with better motor skills, better receptive language skills and more willingness to imitate others also tend to progress more swiftly, even if they don’t stop being autistic. So do children who make striking improvements early on, especially in the first year of treatment — perhaps a sign that something about their brains or their kind of autism enables them to learn more readily. Researchers also say that parental involvement — acting as a child’s advocate, pushing for services, working with the child at home — seems to correlate with more improvements in symptoms. Financial resources, no doubt, help too.
For now, though, the findings are simply hints. “I’ve been studying autistic kids for 40 years,” Fein says, “and I’m pretty good at what I do. But I can’t predict who is going to get better and who’s not based on what they look like when I first see them. In fact, I not only can’t predict who is going to turn out with optimal outcome, but I can’t even predict who will have high-functioning autism and who will be low-functioning. There’s so much we still don’t understand.”
Mark Macluskie, an animated 16-year-old, is another of the children in Fein’s study who no longer has autism. He spends his spare time playing video games, building robots, writing computer code and hanging out with friends at the local park near his home in a Phoenix suburb. He co-hosts a weekly Internet radio show called “Tech Team,” which has 32,000 listeners. On the program, he and a buddy review apps, discuss tech news, tell (very) corny jokes and produce regular features like “Gadget on a Budget.”
Mark Macluskie, around 12 months, about two years before his autism diagnosis; and at home last month before his 16th birthday.
While he seems like a fairly typical geeky teenager now, it took years of hard work to get here. Just before he turned 3, he received a diagnosis of medium to severe autism. He showed no apparent interest in those around him and seemed to understand few words. He threw stunning tantrums. And even when he didn’t seem angry, he would run headlong into walls and fall over, then get up and do it again, like a robot programmed to repeat the same pattern eternally, seemingly impervious to pain despite the bruises spreading across his forehead.
Mark’s parents, Cynthia and Kevin, sent him to their district’s preschool for developmentally delayed children, where he was placed in the highest-functioning class. But he only got worse, having more fits and losing even more language. Within a few months, he was moved to the lowest-functioning class. Cynthia said a neurologist told her to be prepared to someday institutionalize her only child.
In desperation, the Macluskies pulled Mark from school. They took out a $100,000 second mortgage so Cynthia could quit her job in human resources to work full time with Mark, even though she was the primary breadwinner. She scoured the Internet for guidance and vowed to try whatever might possibly work, as long as it didn’t sound dangerous. She gave her son shots of vitamin B-12 and started him on a dairy-free, gluten-free and soy-free diet. She read books on various behavioral therapies, choosing what she liked and then training herself, because the family couldn’t afford to hire professionals. In the end, Cynthia cobbled together a 40-hour-per-week behavioral program, on top of the five hours a week of speech and occupational therapy that the state provided.
They were difficult years. Early on, Mark would hurl eggs at the wall and pour milk on the floor, so the Macluskies padlocked the refrigerator with a heavy chain. They emptied their living room of furniture, replacing it with an inflatable trampoline encircled by rubber walls so that Mark could whap against them to get the sensory input he seemed to need without hurting himself. They made clear to Mark that if he wanted something to eat or drink, he would get it only if he conveyed his desires by using words or sign language or pointing to the relevant flashcard.
Cynthia decided to keep home-schooling Mark, having concluded that traditional school wouldn’t sufficiently address his weaknesses or recognize his strengths. By the time he turned 8, his speech and behavior were on par with peers, but his social thinking remained classically autistic. “I sort of knew there were rules, but I just couldn’t remember what those rules were,” he told me recently by video chat. “It was hard to remember what you’re supposed to do and what you’re not supposed to do when you’re interacting with people.” He rarely noticed social cues, and he couldn’t interpret them when he did. He was too rough, too tactile, too quick to intrude into other people’s personal space.
Cynthia set out to address his social delays. She watched DVR recordings of “Leave It to Beaver” with Mark, stopping every few minutes to ask him to predict what might happen next, or what he thought Beaver was thinking, or why June reacted the way she did. When they had watched every episode, they moved on to “Little House on the Prairie” so Mark could practice reading facial expressions. “I remember it being hard to answer my mom’s questions and being confused when I watched those shows. I knew she was doing all those things for a reason,” he said appreciatively. “I just didn’t know how it was going to help.”
At parks and restaurants, they watched the faces of passers-by and played social detective, with Cynthia asking Mark to find clues to people’s relationships or emotions. “He didn’t seem to learn that stuff through osmosis like other kids do, so I’d have to walk him through it each time till he got it.”
Around that time, his parents gave him a robot kit for Christmas, and he fell madly in love with it. Eager to find opportunities for Mark to practice socializing, Cynthia formed a robot club: Mark and four typically developing children, meeting in the Macluskies’ living room two afternoons a week. At first they just built robots, but soon the five children began writing programming code and entering competitions. Two years ago, Mark made it to the robotics world competition. There he was partnered randomly with teenagers from Singapore and had to strategize with them on the fly. They won several rounds. By then, it had been three years since a specialist concluded that despite some lingering social deficits, Mark no longer met the criteria for autism. As Cynthia watched how well Mark worked with his teammates at that competition, she began sobbing so hard that she had to leave the auditorium.
Mark is also aware of how far he has come. “There’s nothing wrong with being autistic, but my life is much easier not having it,” he said. “For as long as I can remember, I’ve known I was autistic, but I never felt autistic. I just felt like me. That’s all I knew how to feel.”
‘There’s nothing wrong with being autistic, but my life is much easier not having it.’ — Mark Macluskie
Fein’s study found that formerly autistic people often have residual symptoms, at least initially; these include social awkwardness, attention deficit hyperactivity disorder, repetitive movement, mild perseverative interests and subtle difficulties in explaining cause and effect. For Mark, the main remnant is his continued disgust at food that he considers slimy, like omelets, and his dislike for the texture of paper, which he avoids. His mother says that whenever she mentions that Mark once had autism, people look at her as if she’s delusional. “Even doctors say, ‘Well, he must have been misdiagnosed, because a person can’t stop having autism,’ ” she said. “It’s so frustrating. Mark worked so hard. To deny everything he did to get this far isn’t fair.”
No one has figured out what happens inside the brains of people who had autism but no longer do — whether, for example, their brains were different from those of other autistic children to begin with, or whether their brains were similar but then changed because of treatment. But recent research on autistic toddlers by Geraldine Dawson of Duke reveals just how malleable the autistic brain can be. Prior studies determined that autistic children show more brain engagement when they look at color photos of toys than at color photos of women’s faces — even if the photo is of the child’s mother. Typically developing children show the reverse, and the parts of their brain responsible for language and social interaction are more developed than those of autistic children.
Dawson wondered whether steering autistic children’s attention to voices, gestures and facial expressions could alter their brain development. So in arandomized clinical trial published in 2012, she tracked two groups of autistic toddlers: one that received 25 hours a week of a behavioral therapy designed to increase social engagement, and a control group that received whatever treatments their community offered (some behavioral, some not). After two years, electroencephalograms showed that brain activity in the control group still strongly favored nonsocial stimuli, but the EEGs of the social-engagement group were now similar to those of typically developing children. It appeared that their brains had, in fact, changed. Though the children were still autistic, their I.Q.s had also increased and their language, social-engagement and daily-living skills had improved, while the children in the control group had progressed noticeably less.
How this relates to people who are no longer autistic is not entirely clear. Though many studies show that early intensive behavioral therapy significantly eases autism symptoms, most children who receive such therapy nevertheless remain autistic — and some who don’t get it nevertheless stop being autistic. Only two of the eight no-longer-autistic children in Lord’s study received intensive behavioral therapy, because at the time it wasn’t commonly available where the research was conducted, in Illinois and North Carolina.
In Fein’s study, children who lost the diagnosis were twice as likely to have received behavioral therapy as those who remained autistic; they also began therapy at a younger age and received more hours of it each week. But roughly one-quarter of Fein’s formerly autistic participants did not get any behavioral therapy, including a boy named Matt Tremblay. Receiving an autism diagnosis at 2, Matt received speech, occupational and physical therapy until he was 7 or 8. But he wasn’t given behavioral therapy because, his mother recalls, the pediatrician never suggested it and the schools in their town in upstate New York didn’t provide it.
Matt Tremblay, around 6 years, about four years after his autism diagnosis; and at home last month at 17.
Matt’s speech was the first thing to improve, but many of autism’s telltale signs persisted. He remained obsessed with precision and order. He mentally kept track of the schedules and appointments for all five members of his family, knowing who had to be where at what time. “He’d even calculate exactly when each of us had to leave the house, and he’d announce, ‘We have three minutes before we must leave,’ ” his mother, Laurie, told me.
Cognitive and behavioral gains came next, but mastering social skills was a long, difficult process, as it is for most autistic children. Until well into middle school, Matt tended to blurt out whatever he was thinking, and it took him a while to put together the mechanics of conversation. “I remember when I was little that I had a hard time pronouncing things,” Matt said, “and I remember it being frustrating. It was hard to make my mouth listen to my brain. And I remember that up until sixth grade, I didn’t really know how to fit in, how to connect. I was afraid to talk to people. I put my head down when I was in the hall at school, walking to class or going home. I couldn’t relate to other kids — or maybe I just didn’t want to. I guess it was a bit of both.”
After a while, Matt began to figure out social situations. “I think I was in seventh or eighth grade when I finally realized I was supposed to keep on topic,” he said. “And I noticed that when I did that, I started to make more friends. I really don’t know why it finally clicked for me then.” By the time Matt finished eighth grade, his doctor said he no longer had autism.
‘I think I was in seventh or eighth grade when I finally realized I was supposed to keep on topic. And I noticed that when I did that, I started to make more friends.’ — Matt Tremblay
These days, Matt is affable, conversational and funny, a rising senior in high school. During the school year, he plays trumpet in the band and tennis on the varsity team, works as a cashier, busboy and bakery stocker at Panera Bread for 15 to 20 hours a week and still manages to get good grades. He loves to hang out with family and friends. His bedroom, which he kept fanatically neat until adolescence, is now an utter mess — a shift that his mother jokes might be considered a sign of teenage normalcy, though not one she particularly welcomes.
Matt remembers a few things about being an autistic preschooler, like how he used to flap and rock. He remembers his fixation with the Little People School Bus and the calm, deep focus he felt when he drove the toy around and around the kitchen for hours, dropping Little People off all over the floor, then picking them up again. Mild echoes from his autistic days remain. He told me that he still can’t stand wearing tight or stiff clothes, so he opts for sweatpants or loose khakis instead of jeans. And even though he’s a jokester himself, by his own reckoning he still occasionally has difficulty figuring out when someone else is kidding. “I think he still sometimes interprets things more literally than other people do,” said his mother, a pediatric nurse. “Maybe that’s because he had to learn how to read people’s emotions, facial expressions and mannerisms, where other kids just know, just learned it automatically.”
Matt Tremblay, 17, in his bedroom.
When Matt is by himself watching an exciting game on TV, Laurie sometimes passes by and sees him flap his hands. “It just seems like a leftover from the autism, one he easily controls,” she said. Later, I mentioned that to Matt and asked what he was feeling when he flapped. He was stunned to hear his mother’s assessment. “Wow, I thought I stopped doing that at 13 or 14!” Matt insisted that his mother was misinterpreting his gestures. “That’s just me being into sports, being like, ‘Yeah!’ — like anybody would if their team scored a goal.”
Some people reject the idea that eliminating autism is the optimal outcome. “Autism isn’t an illness in need of a cure,” says Ari Ne’eman, the president of the Autistic Self Advocacy Network, a national group run by and for autistic adults. He says that it’s important to remember that the particular qualities of autistic people, which may seem strange to the rest of the world, are actually valuable and part of their identity. Temple Grandin, for example, an author and animal scientist, credits her autism for her remarkable visual-spatial skills and her intense focus on detail, which allowed her to design her renowned humane-slaughter facilities for livestock.
Ne’eman and others strongly support treatments that improve communication and help people develop cognitive, social and independent-living skills. But they deeply resent the focus on erasing autism altogether. Why is no longer being autistic more of an optimal outcome than being an autistic person who lives independently, has friends and a job and is a contributing member of society? Why would someone’s hand-flapping or lack of eye contact be more important in the algorithm of optimal than the fact that they can program a computer, solve vexing math questions or compose arresting music? What proof is there that those who lose the diagnosis are any more successful or happy than those who remain autistic?
“We don’t think it is possible to fundamentally rewire our brains to change the way we think and interact with the world,” Ne’eman says. “But even if such a thing were possible, we don’t think it would be ethical.” He and others argue that autism is akin to homosexuality or left-handedness: a difference but not a deficiency or something pathological. It’s a view that was memorably articulated in 1993 when a man named Jim Sinclair wrote an open letter to parents of autistic children, igniting what would come to be known as the neurodiversity movement. Autism, Sinclair wrote, “colors every experience, every sensation, perception, thought, emotion and encounter, every aspect of existence. It is not possible to separate the autism from the person — and if it were possible, the person you’d have left would not be the same person you started with. . . . Therefore, when parents say, ‘I wish my child did not have autism,’ what they’re really saying is, ‘I wish the autistic child I have did not exist and I had a different (nonautistic) child instead.’ . . . This is what we hear when you pray for a cure.”
Ne’eman says society’s effort to squelch autism parallels its historical effort to suppress homosexuality — and is equally detrimental. He points out that in the 1960s and ‘70s, Lovaas’s team used A.B.A. on boys with “deviant sex-role behaviors,” including a 4-year-old boy whom Lovaas called Kraig, with a “swishy” gait and an aversion to “masculine activities.” Lovaas rewarded “masculine” behavior and punished “feminine” behavior. He considered the treatment a success when the boy looked “indistinguishable” from his peers. Years later, Kraig came out as gay, and at 38 he committed suicide; his family blamed the treatment.
Neurodiversity activists are troubled by the aspects of behavioral therapy that they think are designed less for the well-being of autistic people and more for the comfort of others. Autistic children are often rewarded for using “quiet hands” instead of flapping, in part so that they will not seem odd, a priority that activists find offensive. Ne’eman offered another example: “Eye contact is an anxiety-inducing experience for us, so suppressing our natural inclination not to look someone in the eye takes energy that might otherwise go toward thinking more critically about what that person may be trying to communicate. We have a saying that’s pretty common among autistic young people: ‘I can either look like I’m paying attention or I can actually pay attention.’ Unfortunately, a lot of people tell us that looking like you’re paying attention is more important than actually paying attention.”
Indeed, Ne’eman argues that just as gay people “cured” of homosexuality are simply hiding their real self, people deemed no longer autistic have simply become quite good at passing, an illusion that comes at a psychic cost. Autism activists point out, for example, that one-fifth of the optimal-outcome participants in Fein’s study showed signs of “inhibition, anxiety, depression, inattention and impulsivity, embarrassment or hostility.”
Fein questions this interpretation. She acknowledges that people who stop being autistic are still vulnerable to the psychiatric difficulties that commonly coexist with autism. Nevertheless, optimal-outcome participants were muchless likely than high-functioning autistic people to use antidepressants, anti-anxiety drugs or antipsychotics, Fein found in a subsequent study. Lord’s study likewise found that formerly autistic subjects had far fewer psychiatric problems than autistic subjects of comparable I.Q.
Of course, none of this means that people who have autism should be pressed to become nonautistic, or change how they relate to the world simply because their interactions aren’t typical. Still, now that it’s clear some people really do shed autism, it’s hard to imagine that parents won’t be even more hopeful that their child’s autism might one day disappear.
Carmine DiFlorio is another of the optimal-outcome teenagers in Fein’s study. As a toddler, he seemed to hear nothing, even when his mother intentionally dropped heavy books next to him in the hopes of getting a reaction. Instead, he appeared immersed in an interior world, flapping his arms as if trying to take flight, jumping up and down and hollering “nehhh” over and over. He did not, however, seem unhappy.
After Carmine received an autism diagnosis at age 2, his hometown in central New Jersey provided him with three hours a week of therapy, and his parents, who run a construction business, paid for four more. In a video of a session, a therapist shows Carmine pictures of common objects and tries to teach him vocabulary. She shows him a picture of a glass of milk. His gaze wanders. To get his attention, she taps his knee, calls his name and wiggles the photo in front of him. He looks past her. “Mmmilkkkk,” she enunciates slowly. She sticks the photo right up to his face and turns his chin toward her with her finger. When that doesn’t work, she coaxes: “Pay attention! Milk!” She clutches his head and swivels it to face her. “Ook,” he offers, and she responds: “Good try! Milk!” Later, she tries to get him to practice following simple directions. “Do this,” she says as she pats her thighs. He does nothing for a moment, but then raises his hands and drops them in his lap. It’s close enough: “Yay!” the therapist exclaims. “What a good boy!” She tickles him, and he squeals in glee.
In sessions with another therapist, Carmine rocks when he doesn’t want to do the exercises. Or he pumps his body up and down. Sometimes when he flaps his hands — which he does frequently in those sessions, whenever he’s excited, frustrated, confused or engaged — the therapist holds them down. It’s uncomfortable to watch. The prevailing view at the time was that repetitive movements should be extinguished, for fear that they would preoccupy the child and repel peers. (It’s still a common view, though instead of restraining children, many clinicians redirect them. Some ignore flapping if it doesn’t impede the child’s engagement with other things.)
Carmine learned much more quickly once he started attending a full-time, year-round preschool for children with developmental delays, where he received intensive behavioral therapy throughout the day. When Carmine was a month shy of 5, his teachers sent home a detailed performance report based on a multitude of tests. It revealed that his communication, behavior, sensory, social, daily-living and fine motor skills were on par with those of a typically developing child. Only his gross motor skills were delayed. The other concern the school noted was his flapping and jumping when he was excited; for that, teachers directed him to a “more appropriate way of expressing excitement, such as clapping his hands or giving high-fives.” By the summer before he started kindergarten, the neurologist who gave Carmine his diagnosis was shocked, and declared his autistic characteristics essentially gone.
Carmine doesn’t recall all those efforts to get him to quit flapping. “And I don’t remember why excitement translated into flapping my arms,” he added. “But I definitely do remember the excitement.” He also recalls his kid sister teasing him about flapping when he was 6 or 7, and he remembers deciding then to try to control the impulse. It took years. “When I wanted to flap, I’d put my hands in my pockets. I think I came up with that on my own. It was frustrating for those two years. It was like smiling and then someone telling you that you shouldn’t smile, that smiling was wrong. Remembering to put my hands in my pockets made me less excited because I had to think about it so much. But as time goes on, you get in the habit. So by the time I was 10 or 11, I wasn’t even feeling the urge to flap.”
It’s hard to square the Carmine I saw on those early videos with the 19-year-old I met a few months ago. Today, Carmine is sunny and gregarious; there’s nothing idiosyncratic about his eye contact, gestures or ways of interacting. In the fall, he’ll be a sophomore at the Berklee College of Music in Boston. He says he loves the friends he’s made, the classes he’s taken and the freedom of living independently.
I asked him if there was anything he missed about being autistic. “I miss the excitement,” he said. “When I was little, pretty often I was the happiest a person could be. It was the ultimate joy, this rush in your entire body, and you can’t contain it. That went away when my sister started teasing me and I realized flapping wasn’t really acceptable. Listening to really good music is the main time I feel that joy now. I still feel it in my whole body, but I don’t outwardly react to it like I used to.”
‘When I was little, pretty often I was the happiest a person could be. That went away when my sister started teasing me and I realized flapping wasn’t really acceptable.’ — Carmine DiFlorio
Carmine’s mother, Carol Migliaccio, told me that watching him improve during those early years was thrilling, but she became painfully aware of how unusual his experience was. At first, when Carmine made swift progress at his preschool, his parents gushed publicly. “We were like: ‘Oh, my god! He shared the cake! He’s talking! He’s doing better!’ ” Carol said. But they quickly realized that most of his schoolmates were progressing far more slowly. “I had that guilt,” Carol said. “He was just climbing mountains, and the others weren’t. Having all seven kids in a room with the same teachers, you could see who was still spinning in their own world, who was still not talking. You just feel bad. The other mothers ask you, ‘What are you doing that I haven’t done?’ And you have nothing to tell them.”
For many parents, it is surely tempting to scrutinize the new studies for hidden clues or a formula for how to undo autism. But many mysteries still remain about autism’s trajectory, and researchers urge parents to keep the results in perspective. “I see a lot of parents of 2-year-olds,” Catherine Lord says, “who have heard stories about kids growing out of autism, and they tell us, ‘I want my kid to be one of those kids.’ ” She reminds them that only a minority of children lose their symptoms, and she counsels parents to focus instead on helping their child reach his or her potential, whatever it is, instead of feeling that nothing short of recovery is acceptable. “When you get too focused on ‘getting to perfect,’ you can really hurt your child. A typical kid fights back against that kind of pressure, but a kid with autism might not. It’s fine to hope — it’s good to hope — but don’t concentrate so much on that hope that you don’t see the child in front of you.”
Negotiating how best to raise a child with autism — or one who no longer has it — is clearly complicated. For L. and her husband, that involved deciding to move once B. had made significant progress. The summer after kindergarten, the family settled into a new school district. “We moved so no one would know, so people would approach him with an open mind,” L. said. “We didn’t even tell his teachers at the new school.” In fact, L. and her husband didn’t even tell B. about his autism until he was 12 or 13. When they did, he was shocked — dead quiet and shaken. L. said he asked, “Why didn’t you ever tell me this?” L. said, “I didn’t think you were ready to hear it.” He responded, “I don’t think I’m ready to hear it now.”
B. is in his early 20s and recently graduated from a select university. L. told me that although he battled A.D.H.D. and occasional social anxiety, he got good grades, studied abroad, had good friends and a girlfriend. He majored in psychology, focusing on its potential to change people’s lives.
B.'s past is a secret that he and his family still keep, even from close friends. L. is afraid people will be disturbed by the idea that B. was once autistic or will think the family is exaggerating his past. L. says she and her husband don’t bring up autism with B., because they fear it might upset him — which is why L. refused to ask B. if he’d talk with me and insisted that I not ask him myself. But sometimes B. brings up autism with his parents. Usually he asks what he was like when he was autistic, but recently he asked his mother a different question: Was it horrible for you? L. told me she paused, trying to figure out how to be honest without upsetting him. “I told him that it was really, really scary. But the hard times were short-lived, because he responded so quickly and so well once we figured out what to do. We’ve told him many times that so few people have that outcome and that he’s one of the lucky ones.”
Jackie’s son, Matthew, now 24, has not had that conversation with his parents. In fact, he barely has conversations at all. At the group home where he now lives, near a horse farm in the Berkshires, the staff can generally interpret the sounds he makes. Sometimes he types clues on the iPod Touch his parents gave him, because he long ago learned to spell the things that matter to him. But mostly he seems absorbed by his interior life. He is calmed by the routines there, including his assigned chore of brushing the horses, even though he does that for only a few seconds before he wanders away. Every day, the caregivers take him to swim in an indoor pool, where he squeals in a piercingly high pitch of delight. In the evenings, he is happiest watching Disney videos and crooning along in a sort of indistinct warbling. The words he does pronounce clearly are “Mama” and “Daddy.”
His parents see him most weekends. During those visits, Matthew sometimes gets wiggly, which can be a signal that he wants something he doesn’t have. Jackie will say, “Show me,” and hand him her smartphone, and Matthew will type a text. She showed me some of his recent messages: “Eat lunch. Chicken nuggets. Fries. Ketchup. Brownie. Ice cream. Cookies.” And “Peter Pan. Watch a tape.” To communicate with her, he doesn’t ask for her phone, or point to it, or reach toward it, or mime texting. He doesn’t seem to understand that those are ways to express his wishes, despite 20 years of effort to teach him so.
The idea that Matthew won’t recover no longer pains Jackie. “At some point,” she told me, “I realized he was never going to be normal. He’s his own normal. And I realized Matthew’s autism wasn’t the enemy; it’s what he is. I had to make peace with that. If Matthew was still unhappy, I’d still be fighting. But he’s happy. Frankly, he’s happier than a lot of typically developing kids his age. And we get a lot of joy from him. He’s very cuddly. He gives us endless kisses. I consider all that a victory.”