{"id":695,"date":"2014-08-01T09:57:20","date_gmt":"2014-08-01T09:57:20","guid":{"rendered":"https:\/\/aba-easysteps.co.uk\/wp\/?p=695"},"modified":"2020-07-17T05:57:55","modified_gmt":"2020-07-17T05:57:55","slug":"the-kids-who-beat-autism-2","status":"publish","type":"post","link":"https:\/\/aba-easysteps.co.uk\/wp\/the-kids-who-beat-autism-2\/","title":{"rendered":"The Kids Who Beat Autism."},"content":{"rendered":"<div class=\"image\">\n<div style=\"width: 444px\" class=\"wp-caption alignright\"><img data-recalc-dims=\"1\" loading=\"lazy\" decoding=\"async\" class=\"media-viewer-candidate\" src=\"https:\/\/i0.wp.com\/static01.nyt.com\/images\/2014\/08\/03\/magazine\/03autism5\/03autism5-master675-v2.jpg?resize=434%2C349\" alt=\"\" width=\"434\" height=\"349\" data-mediaviewer-src=\"http:\/\/static01.nyt.com\/images\/2014\/08\/03\/magazine\/03autism5\/03autism5-superJumbo-v2.jpg\" data-mediaviewer-caption=\"Mark Macluskie, 16, who is no longer autistic.\" data-mediaviewer-credit=\"Mark Peckmezian for The New York Times\"\/><p class=\"wp-caption-text\">Mark Macluskie, 16, who is no longer autistic.&nbsp;CreditMark Peckmezian for The New York Times<\/p><\/div>\n<div class=\"media-action-overlay\">At first, everything about L.&#8217;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. \u201cHe had been this happy, happy little guy,\u201d L. said. \u201cAll of a sudden, he was just fading away, falling apart. I can\u2019t even describe my sadness. It was unbearable.\u201d More than anything in the world, L. wanted her warm and exuberant boy back.<\/div>\n<\/div>\n<p><!--more--><\/p>\n<p id=\"story-continues-2\" class=\"story-body-text story-content\" data-para-count=\"671\" data-total-count=\"1337\">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\u2019s 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\u2019s son, Matthew, would be fine. She was wrong. Within months, Matthew acknowledged no one, not even his parents. The last word he had was \u201cMama,\u201d and by the time Jackie met L., even that was gone.<\/p>\n<p class=\"story-body-text story-content\" data-para-count=\"579\" data-total-count=\"1916\">In the months and years that followed, the two women spent hours on the phone and at each other\u2019s 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.<\/p>\n<p class=\"story-body-text story-content\" data-para-count=\"916\" data-total-count=\"2832\">Together the women considered applied behavior analysis, or A.B.A. \u2014 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 \u201crecovered\u201d from autism. The day after L. finished it, she tried the exercises in the book\u2019s appendix: Give an instruction, prompt the child to follow it, reward him when he does. \u201cClap your hands,\u201d she\u2019d say to B. and then take his hands in hers and clap them. Then she would tickle him or give him an M&amp;M and cheer, \u201cGood boy!\u201d Though she barely knew what she was doing, she said, \u201che still made amazing progress compared with anything he\u2019d gotten before.\u201d<\/p>\n<p class=\"story-body-text story-content\" data-para-count=\"844\" data-total-count=\"3676\">Impressed with B.&#8217;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\u2019 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.<\/p>\n<p id=\"story-continues-3\" class=\"story-body-text story-content\" data-para-count=\"1378\" data-total-count=\"5054\">The specialists taught the parents that if their child wanted something, they should hand it to him \u2014 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\u2019t 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. \u201cBetween the time he was age 1 and almost 3,\u201d L. said, \u201cI remember only darkness, only fear. But as soon as I figured out how to teach him, the darkness lifted. It was thrilling. I couldn\u2019t wait to get up each morning and teach him something new. It wasn\u2019t work at all. It was a huge, huge relief.\u201d 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 \u2014 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?<\/p>\n<p class=\"story-body-text story-content\" data-para-count=\"344\" data-total-count=\"5398\">Suddenly, B. pleaded: \u201cTree! Tree!\u201d It hit her: He wanted the grapes still attached to the stem. He wanted to pull them off himself! \u201cIt was like, Oh, my god, how many times have I thought his tantrums were random, when they weren\u2019t random at all? I felt so bad for him: What other things have you wanted that you couldn\u2019t tell me?\u201d<\/p>\n<p class=\"story-body-text story-content\" data-para-count=\"1031\" data-total-count=\"6429\">After that, B.&#8217;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 \u2014 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\u2019t, listen. L. made three small laminated coupons, and each morning, she\u2019d tuck them into B.&#8217;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.&#8217;s monologues stopped by second grade. Around the same time, his fixations eased. B.&#8217;s doctor concluded that the last vestiges of his autism were gone; he no longer met the criteria, even in its mildest form.<\/p>\n<p class=\"story-body-text story-content\" data-para-count=\"539\" data-total-count=\"6968\">L. was ecstatic, but she was also plagued by guilt. Though Jackie\u2019s 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\u2019s communication remained extremely limited: When he squealed loudly, he was happy. When he threw up \u2014 which for a year he did daily \u2014 his parents concluded that he was distressed, after a doctor assured them that there wasn\u2019t anything physically wrong with him.<\/p>\n<p id=\"story-continues-4\" class=\"story-body-text story-content\" data-para-count=\"355\" data-total-count=\"7323\">\u201cJackie did everything for him,\u201d L. told me, her voice filled with angst. \u201cEverything. She tried just as hard as I did. She hired the same people, did the same work. . . . &#8221; 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.<\/p>\n<p id=\"story-continues-5\" class=\"story-body-text story-content\" data-para-count=\"909\" data-total-count=\"8232\"><span style=\"font-weight: bold;\">A<\/span><span style=\"font-weight: bold;\">utism is considered<\/span>&nbsp;a lifelong developmental disorder, but its diagnosis is based on a constellation of behavioral symptoms \u2014 social difficulties, fixated interests, obsessive or repetitive actions and unusually intense or dulled reactions to sensory stimulation \u2014 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 \u2014 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.<\/p>\n<p class=\"story-body-text story-content\" data-para-count=\"1022\" data-total-count=\"9254\">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 \u201cextinguish\u201d 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 \u2014 completing first grade in a \u201cnormal\u201d classroom and displaying at least an average I.Q. The therapy itself was also criticized, because it relied, in part, on \u201caversives\u201d: sharp noises, slaps and even electric shocks. By the 1990s, after a public outcry, Lovaas and most of his followers abandoned aversives.<\/p>\n<p class=\"story-body-text story-content\" data-para-count=\"466\" data-total-count=\"9720\">While subsequent studies did not reproduce Lovaas\u2019s 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\u2019t as complete as claimed.<\/p>\n<p class=\"story-body-text story-content\" data-para-count=\"678\" data-total-count=\"10398\">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&nbsp;<a style=\"color: #326891;\" href=\"http:\/\/www.ncbi.nlm.nih.gov\/pubmed\/24799263\">first, led by Deborah Fein<\/a>, 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\u2019s criteria, a trajectory she called \u201coptimal outcome.\u201d She compared them with 44 young people who still had autism and were evaluated as \u201chigh functioning,\u201d as well as 34 typically developing peers.<\/p>\n<p id=\"story-continues-6\" class=\"story-body-text story-content\" data-para-count=\"478\" data-total-count=\"10876\">In May, another set of researchers published&nbsp;<a style=\"color: #326891;\" href=\"http:\/\/www.ncbi.nlm.nih.gov\/pubmed\/24313878\">a study that tracked 85 children<\/a>&nbsp;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 \u201cvery positive outcome.\u201d<\/p>\n<p class=\"story-body-text story-content\" data-para-count=\"649\" data-total-count=\"11525\">Autism specialists hailed the reports. \u201cThose of us who work closely with children with autism,\u201d says Geraldine Dawson, a psychologist and researcher at Duke University\u2019s department of psychiatry and the Institute for Brain Sciences, \u201chave 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 \u2014 and yet people always questioned it. This work, in a very careful and systematic way, shows these kids exist.\u201d She told me that she and many of her colleagues estimated that 10 percent or more of their autistic patients no longer had symptoms.<\/p>\n<p class=\"story-body-text story-content\" data-para-count=\"912\" data-total-count=\"12437\">The findings come at a time when the number of autism cases nationwide appears to be climbing rapidly. No nationally representative study of autism\u2019s prevalence exists, but the Centers for Disease Control and Prevention\u2019s 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 \u2014 among them toxic substances and older parental age \u2014 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\u2019t.<\/p>\n<p class=\"story-body-text story-content\" data-para-count=\"1285\" data-total-count=\"13722\">The research by Fein and Lord doesn\u2019t try to determine what causes autism or what exactly makes it go away \u2014 only that it sometimes disappears. There do, however, seem to be some clues, like the role of I.Q.: The children in Lord\u2019s 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\u2019s 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\u2019t stop being autistic. So do children who make striking improvements early on, especially in the first year of treatment \u2014 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 \u2014 acting as a child\u2019s advocate, pushing for services, working with the child at home \u2014 seems to correlate with more improvements in symptoms. Financial resources, no doubt, help too.<\/p>\n<p id=\"story-continues-7\" class=\"story-body-text story-content\" data-para-count=\"500\" data-total-count=\"14222\">For now, though, the findings are simply hints. \u201cI\u2019ve been studying autistic kids for 40 years,\u201d Fein says, \u201cand I\u2019m pretty good at what I do. But I can\u2019t predict who is going to get better and who\u2019s not based on what they look like when I first see them. In fact, I not only can\u2019t predict who is going to turn out with optimal outcome, but I can\u2019t even predict who will have high-functioning autism and who will be low-functioning. There\u2019s so much we still don\u2019t understand.\u201d<\/p>\n<p class=\"story-body-text story-content\" data-para-count=\"518\" data-total-count=\"14740\"><span style=\"font-weight: bold;\">Mark Macluskie,<\/span>&nbsp;an animated 16-year-old, is another of the children in Fein\u2019s 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 \u201cTech Team,\u201d 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 \u201cGadget on a Budget.\u201d<\/p>\n<figure class=\"media photo embedded has-adjacency layout-large-horizontal\" data-media-action=\"modal\"><span class=\"visually-hidden\">Photo<\/span><\/p>\n<div class=\"image\"><img data-recalc-dims=\"1\" decoding=\"async\" class=\"media-viewer-candidate\" src=\"https:\/\/i0.wp.com\/static01.nyt.com\/images\/2014\/08\/03\/magazine\/03autism2\/mag-03Autism-t_CA1-articleLarge.jpg?w=720\" alt=\"\" data-mediaviewer-src=\"http:\/\/static01.nyt.com\/images\/2014\/08\/03\/magazine\/03autism2\/mag-03Autism-t_CA1-superJumbo.jpg\" data-mediaviewer-caption=\"Mark Macluskie, around 12 months, about two years before his autism diagnosis; and at home last month before his 16th birthday.\" data-mediaviewer-credit=\"Left: Photograph from the Macluskie family. Right: Mark Peckmezian for The New York Times.\"\/><\/p>\n<div class=\"media-action-overlay\"><\/div>\n<\/div><figcaption class=\"caption\" style=\"color: #666666;\"><span class=\"caption-text\">Mark Macluskie, around 12 months, about two years before his autism diagnosis; and at home last month before his 16th birthday.<\/span><span class=\"credit\" style=\"color: #999999;\"><span class=\"visually-hidden\">Credit<\/span>Left: Photograph from the Macluskie family. Right: Mark Peckmezian for The New York Times.<\/span><\/figcaption><\/figure>\n<p class=\"story-body-text story-content\" data-para-count=\"545\" data-total-count=\"15285\">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\u2019t 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.<\/p>\n<p id=\"story-continues-8\" class=\"story-body-text story-content\" data-para-count=\"402\" data-total-count=\"15687\">Mark\u2019s parents, Cynthia and Kevin, sent him to their district\u2019s 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.<\/p>\n<p class=\"story-body-text story-content\" data-para-count=\"774\" data-total-count=\"16461\">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\u2019t 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\u2019t 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.<\/p>\n<p class=\"story-body-text story-content\" data-para-count=\"569\" data-total-count=\"17030\">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.<\/p>\n<p id=\"story-continues-9\" class=\"story-body-text story-content\" data-para-count=\"718\" data-total-count=\"17748\">Cynthia decided to keep home-schooling Mark, having concluded that traditional school wouldn\u2019t 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. \u201cI sort of knew there were rules, but I just couldn\u2019t remember what those rules were,\u201d he told me recently by video chat. \u201cIt was hard to remember what you\u2019re supposed to do and what you\u2019re not supposed to do when you\u2019re interacting with people.\u201d He rarely noticed social cues, and he couldn\u2019t interpret them when he did. He was too rough, too tactile, too quick to intrude into other people\u2019s personal space.<\/p>\n<p class=\"story-body-text story-content\" data-para-count=\"638\" data-total-count=\"18386\">Cynthia set out to address his social delays. She watched DVR recordings of \u201cLeave It to Beaver\u201d 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 \u201cLittle House on the Prairie\u201d so Mark could practice reading facial expressions. \u201cI remember it being hard to answer my mom\u2019s questions and being confused when I watched those shows. I knew she was doing all those things for a reason,\u201d he said appreciatively. \u201cI just didn\u2019t know how it was going to help.\u201d<\/p>\n<p class=\"story-body-text story-content\" data-para-count=\"313\" data-total-count=\"18699\">At parks and restaurants, they watched the faces of passers-by and played social detective, with Cynthia asking Mark to find clues to people\u2019s relationships or emotions. \u201cHe didn\u2019t seem to learn that stuff through osmosis like other kids do, so I\u2019d have to walk him through it each time till he got it.\u201d<\/p>\n<p class=\"story-body-text story-content\" data-para-count=\"907\" data-total-count=\"19606\">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\u2019 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.<\/p>\n<p class=\"story-body-text story-content\" data-para-count=\"291\" data-total-count=\"19897\">Mark is also aware of how far he has come. \u201cThere\u2019s nothing wrong with being autistic, but my life is much easier not having it,\u201d he said. \u201cFor as long as I can remember, I\u2019ve known I was autistic, but I never felt autistic. I just felt like me. That\u2019s all I knew how to feel.\u201d<\/p>\n<figure id=\"mag-03Autism-pullquote1\" class=\"interactive interactive-embedded  limit-small layout-small thisFigure\">\n<div class=\"interactive-graphic\">\n<div class=\"pullQuote\">\n<blockquote>\n<p style=\"color: black;\"><em><strong>\u2018There\u2019s nothing wrong with being autistic, but my life is much easier not having it.\u2019 \u2014 Mark Macluskie<\/strong><\/em><\/p>\n<\/blockquote>\n<\/div>\n<\/div>\n<div class=\"footer\"><\/div>\n<\/figure>\n<p id=\"story-continues-10\" class=\"story-body-text story-content\" data-para-count=\"785\" data-total-count=\"20682\">Fein\u2019s 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\u2019s delusional. \u201cEven doctors say, \u2018Well, he must have been misdiagnosed, because a person can\u2019t stop having autism,\u2019 \u201d she said. \u201cIt\u2019s so frustrating. Mark worked so hard. To deny everything he did to get this far isn\u2019t fair.\u201d<\/p>\n<p id=\"story-continues-11\" class=\"story-body-text story-content\" data-para-count=\"782\" data-total-count=\"21464\"><span style=\"font-weight: bold;\">N<\/span><span style=\"font-weight: bold;\">o one has<\/span>&nbsp;figured out what happens inside the brains of people who had autism but no longer do \u2014 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\u2019s faces \u2014 even if the photo is of the child\u2019s 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.<\/p>\n<p class=\"story-body-text story-content\" data-para-count=\"953\" data-total-count=\"22417\">Dawson wondered whether steering autistic children\u2019s 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.<\/p>\n<p class=\"story-body-text story-content\" data-para-count=\"536\" data-total-count=\"22953\">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 \u2014 and some who don\u2019t get it nevertheless stop being autistic. Only two of the eight no-longer-autistic children in Lord\u2019s study received intensive behavioral therapy, because at the time it wasn\u2019t commonly available where the research was conducted, in Illinois and North Carolina.<\/p>\n<p class=\"story-body-text story-content\" data-para-count=\"651\" data-total-count=\"23604\">In Fein\u2019s 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\u2019s 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\u2019t given behavioral therapy because, his mother recalls, the pediatrician never suggested it and the schools in their town in upstate New York didn\u2019t provide it.<\/p>\n<figure class=\"media photo embedded has-adjacency layout-large-horizontal\" data-media-action=\"modal\"><span class=\"visually-hidden\">Photo<\/span><\/p>\n<div class=\"image\"><img data-recalc-dims=\"1\" decoding=\"async\" class=\"media-viewer-candidate\" src=\"https:\/\/i0.wp.com\/static01.nyt.com\/images\/2014\/08\/03\/magazine\/03autism3\/mag-03Autism-t_CA2-articleLarge.jpg?w=720\" alt=\"\" data-mediaviewer-src=\"http:\/\/static01.nyt.com\/images\/2014\/08\/03\/magazine\/03autism3\/mag-03Autism-t_CA2-superJumbo.jpg\" data-mediaviewer-caption=\"Matt Tremblay, around 6 years, about four years after his autism diagnosis; and at home last month at 17.\" data-mediaviewer-credit=\"Left: Photograph from the Tremblay family. Right: Mark Peckmezian for The New York Times.\"\/><\/p>\n<div class=\"media-action-overlay\"><\/div>\n<\/div><figcaption class=\"caption\" style=\"color: #666666;\"><span class=\"caption-text\">Matt Tremblay, around 6 years, about four years after his autism diagnosis; and at home last month at 17.<\/span>&nbsp;<span class=\"credit\" style=\"color: #999999;\"><span class=\"visually-hidden\">Credit<\/span>Left: Photograph from the Tremblay family. Right: Mark Peckmezian for The New York Times.<\/span><\/figcaption><\/figure>\n<p class=\"story-body-text story-content\" data-para-count=\"455\" data-total-count=\"24059\">Matt\u2019s speech was the first thing to improve, but many of autism\u2019s 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. \u201cHe\u2019d even calculate exactly when each of us had to leave the house, and he\u2019d announce, \u2018We have three minutes before we must leave,\u2019 \u201d his mother, Laurie, told me.<\/p>\n<p id=\"story-continues-12\" class=\"story-body-text story-content\" data-para-count=\"786\" data-total-count=\"24845\">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. \u201cI remember when I was little that I had a hard time pronouncing things,\u201d Matt said, \u201cand 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\u2019t 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\u2019t relate to other kids \u2014 or maybe I just didn\u2019t want to. I guess it was a bit of both.\u201d<\/p>\n<p class=\"story-body-text story-content\" data-para-count=\"384\" data-total-count=\"25229\">After a while, Matt began to figure out social situations. \u201cI think I was in seventh or eighth grade when I finally realized I was supposed to keep on topic,\u201d he said. \u201cAnd I noticed that when I did that, I started to make more friends. I really don\u2019t know why it finally clicked for me then.\u201d By the time Matt finished eighth grade, his doctor said he no longer had autism.<\/p>\n<figure id=\"mag-03Autism-pullquote2\" class=\"interactive interactive-embedded  has-adjacency limit-small layout-small thisFigure\">\n<div class=\"interactive-graphic\">\n<div class=\"pullQuote\">\n<div class=\"future\"><\/div>\n<blockquote>\n<p style=\"color: black;\"><strong><em>\u2018I 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.\u2019 \u2014 Matt Tremblay<\/em><\/strong><\/p>\n<\/blockquote>\n<\/div>\n<\/div>\n<div class=\"footer\"><\/div>\n<\/figure>\n<p id=\"story-continues-13\" class=\"story-body-text story-content\" data-para-count=\"551\" data-total-count=\"25780\">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 \u2014 a shift that his mother jokes might be considered a sign of teenage normalcy, though not one she particularly welcomes.<\/p>\n<p class=\"story-body-text story-content\" data-para-count=\"944\" data-total-count=\"26724\">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\u2019t stand wearing tight or stiff clothes, so he opts for sweatpants or loose khakis instead of jeans. And even though he\u2019s a jokester himself, by his own reckoning he still occasionally has difficulty figuring out when someone else is kidding. \u201cI think he still sometimes interprets things more literally than other people do,\u201d said his mother, a pediatric nurse. \u201cMaybe that\u2019s because he had to learn how to read people\u2019s emotions, facial expressions and mannerisms, where other kids just know, just learned it automatically.\u201d<\/p>\n<figure class=\"media photo embedded has-adjacency layout-large-vertical\" data-media-action=\"modal\"><span class=\"visually-hidden\">Photo<\/span><\/p>\n<div class=\"image\"><img data-recalc-dims=\"1\" decoding=\"async\" class=\"media-viewer-candidate\" src=\"https:\/\/i0.wp.com\/static01.nyt.com\/images\/2014\/08\/03\/magazine\/03autism1\/mag-03Autism-t_CA0-blog427.jpg?w=720\" alt=\"\" data-mediaviewer-src=\"http:\/\/static01.nyt.com\/images\/2014\/08\/03\/magazine\/03autism1\/mag-03Autism-t_CA0-superJumbo.jpg\" data-mediaviewer-caption=\"Matt Tremblay, 17, in his bedroom.\" data-mediaviewer-credit=\"Mark Peckmezian for The New York Times\"\/><\/p>\n<div class=\"media-action-overlay\"><\/div>\n<\/div><figcaption class=\"caption\" style=\"color: #666666;\"><span class=\"caption-text\">Matt Tremblay, 17, in his bedroom.<\/span><span class=\"credit\" style=\"color: #999999;\"><span class=\"visually-hidden\">Credit<\/span>Mark Peckmezian for The New York Times<\/span><\/figcaption><\/figure>\n<p class=\"story-body-text story-content\" data-para-count=\"565\" data-total-count=\"27289\">When Matt is by himself watching an exciting game on TV, Laurie sometimes passes by and sees him flap his hands. \u201cIt just seems like a leftover from the autism, one he easily controls,\u201d she said. Later, I mentioned that to Matt and asked what he was feeling when he flapped. He was stunned to hear his mother\u2019s assessment. \u201cWow, I thought I stopped doing that at 13 or 14!\u201d Matt insisted that his mother was misinterpreting his gestures. \u201cThat\u2019s just me being into sports, being like, \u2018Yeah!\u2019 \u2014 like anybody would if their team scored a goal.\u201d<\/p>\n<p id=\"story-continues-14\" class=\"story-body-text story-content\" data-para-count=\"677\" data-total-count=\"27966\"><span style=\"font-weight: bold;\">S<\/span><span style=\"font-weight: bold;\">ome people reject&nbsp;<\/span>the idea that eliminating autism is the optimal outcome. \u201cAutism isn\u2019t an illness in need of a cure,\u201d says Ari Ne\u2019eman, the president of the Autistic Self Advocacy Network, a national group run by and for autistic adults. He says that it\u2019s 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.<\/p>\n<p id=\"story-continues-15\" class=\"story-body-text story-content\" data-para-count=\"716\" data-total-count=\"28682\">Ne\u2019eman 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\u2019s 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?<\/p>\n<aside class=\"marginalia comments-marginalia  selected-comment-marginalia\" data-marginalia-type=\"sprinkled\" data-skip-to-para-id=\"story-continues-16\">\n<div class=\"comments-view\">\n<article class=\"comment\" data-permid=\"12440784\">\n<header>\n<p id=\"story-continues-16\" class=\"story-body-text story-content\" data-para-count=\"1146\" data-total-count=\"29828\">\u201cWe don\u2019t think it is possible to fundamentally rewire our brains to change the way we think and interact with the world,\u201d Ne\u2019eman says. \u201cBut even if such a thing were possible, we don\u2019t think it would be ethical.\u201d He and others argue that autism is akin to homosexuality or left-handedness: a difference but not a deficiency or something pathological. It\u2019s 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, \u201ccolors every experience, every sensation, perception, thought, emotion and encounter, every aspect of existence. It is not possible to separate the autism from the person \u2014 and if it were possible, the person you\u2019d have left would not be the same person you started with. . . . Therefore, when parents say, \u2018I wish my child did not have autism,\u2019 what they\u2019re really saying is, \u2018I wish the autistic child I have did not exist and I had a different (nonautistic) child instead.\u2019 . . . This is what we hear when you pray for a cure.\u201d<\/p>\n<p class=\"story-body-text story-content\" data-para-count=\"663\" data-total-count=\"30491\">Ne\u2019eman says society\u2019s effort to squelch autism parallels its historical effort to suppress homosexuality \u2014 and is equally detrimental. He points out that in the 1960s and \u201870s,&nbsp;<a style=\"color: #326891;\" href=\"http:\/\/www.ncbi.nlm.nih.gov\/pmc\/articles\/PMC1311956\/\">Lovaas\u2019s team used A.B.A.<\/a>&nbsp;on boys with \u201cdeviant sex-role behaviors,\u201d including a 4-year-old boy whom Lovaas called Kraig, with a \u201cswishy\u201d gait and an aversion to \u201cmasculine activities.\u201d Lovaas rewarded \u201cmasculine\u201d behavior and punished \u201cfeminine\u201d behavior. He considered the treatment a success when the boy looked \u201cindistinguishable\u201d from his peers. Years later, Kraig came out as gay, and at 38 he committed suicide; his family blamed the treatment.<\/p>\n<p id=\"story-continues-17\" class=\"story-body-text story-content\" data-para-count=\"924\" data-total-count=\"31415\">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 \u201cquiet hands\u201d instead of flapping, in part so that they will not seem odd, a priority that activists find offensive. Ne\u2019eman offered another example: \u201cEye 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\u2019s pretty common among autistic young people: \u2018I can either look like I\u2019m paying attention or I can actually pay attention.\u2019 Unfortunately, a lot of people tell us that looking like you\u2019re paying attention is more important than actually paying attention.\u201d<\/p>\n<p class=\"story-body-text story-content\" data-para-count=\"451\" data-total-count=\"31866\">Indeed, Ne\u2019eman argues that just as gay people \u201ccured\u201d 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\u2019s study showed signs of \u201cinhibition, anxiety, depression, inattention and impulsivity, embarrassment or hostility.\u201d<\/p>\n<p class=\"story-body-text story-content\" data-para-count=\"514\" data-total-count=\"32380\">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 much<em>less<\/em>&nbsp;likely than high-functioning autistic people to use antidepressants, anti-anxiety drugs or antipsychotics, Fein found in a subsequent study. Lord\u2019s study likewise found that formerly autistic subjects had far fewer psychiatric problems than autistic subjects of comparable I.Q.<\/p>\n<p class=\"story-body-text story-content\" data-para-count=\"371\" data-total-count=\"32751\">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\u2019t typical. Still, now that it\u2019s clear some people really do shed autism, it\u2019s hard to imagine that parents won\u2019t be even more hopeful that their child\u2019s autism might one day disappear.<\/p>\n<p class=\"story-body-text story-content\" data-para-count=\"418\" data-total-count=\"33169\"><span style=\"font-weight: bold;\">Carmine DiFlorio<\/span>&nbsp;is another of the optimal-outcome teenagers in Fein\u2019s 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 \u201cnehhh\u201d over and over. He did not, however, seem unhappy.<\/p>\n<figure class=\"media photo embedded layout-large-horizontal\" data-media-action=\"modal\"><span class=\"visually-hidden\">Photo<\/span><\/p>\n<div class=\"image\"><img data-recalc-dims=\"1\" decoding=\"async\" class=\"media-viewer-candidate\" src=\"https:\/\/i0.wp.com\/static01.nyt.com\/images\/2014\/08\/03\/magazine\/03autism4\/mag-03Autism-t_CA3-articleLarge.jpg?w=720\" alt=\"\" data-mediaviewer-src=\"http:\/\/static01.nyt.com\/images\/2014\/08\/03\/magazine\/03autism4\/mag-03Autism-t_CA3-superJumbo.jpg\" data-mediaviewer-caption=\"Carmine DiFlorio, around 2 years (center), months after his autism diagnosis, with his mother, Carol, and siblings, Damiano and Gemma; and at 19 (standing) with his siblings last month.\" data-mediaviewer-credit=\"Left: Photograph from the DiFlorio family. Right: Mark Peckmezian for The New York Times.\"\/><\/p>\n<div class=\"media-action-overlay\"><\/div>\n<\/div><figcaption class=\"caption\" style=\"color: #666666;\"><span class=\"caption-text\">Carmine DiFlorio, around 2 years (center), months after his autism diagnosis, with his mother, Carol, and siblings, Damiano and Gemma; and at 19 (standing) with his siblings last month.<\/span><span class=\"credit\" style=\"color: #999999;\"><span class=\"visually-hidden\">Credit<\/span>Left: Photograph from the DiFlorio family. Right: Mark Peckmezian for The New York Times.<\/span><\/figcaption><\/figure>\n<p class=\"story-body-text story-content\" data-para-count=\"1121\" data-total-count=\"34290\">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. \u201cMmmilkkkk,\u201d she enunciates slowly. She sticks the photo right up to his face and turns his chin toward her with her finger. When that doesn\u2019t work, she coaxes: \u201cPay attention! Milk!\u201d She clutches his head and swivels it to face her. \u201cOok,\u201d he offers, and she responds: \u201cGood try! Milk!\u201d Later, she tries to get him to practice following simple directions. \u201cDo this,\u201d 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\u2019s close enough: \u201cYay!\u201d the therapist exclaims. \u201cWhat a good boy!\u201d She tickles him, and he squeals in glee.<\/p>\n<p id=\"story-continues-18\" class=\"story-body-text story-content\" data-para-count=\"669\" data-total-count=\"34959\">In sessions with another therapist, Carmine rocks when he doesn\u2019t want to do the exercises. Or he pumps his body up and down. Sometimes when he flaps his hands \u2014 which he does frequently in those sessions, whenever he\u2019s excited, frustrated, confused or engaged \u2014 the therapist holds them down. It\u2019s 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\u2019s still a common view, though instead of restraining children, many clinicians redirect them. Some ignore flapping if it doesn\u2019t impede the child\u2019s engagement with other things.)<\/p>\n<p class=\"story-body-text story-content\" data-para-count=\"905\" data-total-count=\"35864\">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 \u201cmore appropriate way of expressing excitement, such as clapping his hands or giving high-fives.\u201d By the summer before he started kindergarten, the neurologist who gave Carmine his diagnosis was shocked, and declared his autistic characteristics essentially gone.<\/p>\n<p class=\"story-body-text story-content\" data-para-count=\"828\" data-total-count=\"36692\">Carmine doesn\u2019t recall all those efforts to get him to quit flapping. \u201cAnd I don\u2019t remember why excitement translated into flapping my arms,\u201d he added. \u201cBut I definitely do remember the excitement.\u201d 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. \u201cWhen I wanted to flap, I\u2019d 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\u2019t 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\u2019t even feeling the urge to flap.\u201d<\/p>\n<p class=\"story-body-text story-content\" data-para-count=\"421\" data-total-count=\"37113\">It\u2019s 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\u2019s nothing idiosyncratic about his eye contact, gestures or ways of interacting. In the fall, he\u2019ll be a sophomore at the Berklee College of Music in Boston. He says he loves the friends he\u2019s made, the classes he\u2019s taken and the freedom of living independently.<\/p>\n<p class=\"story-body-text story-content\" data-para-count=\"519\" data-total-count=\"37632\">I asked him if there was anything he missed about being autistic. \u201cI miss the excitement,\u201d he said. \u201cWhen 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\u2019t contain it. That went away when my sister started teasing me and I realized flapping wasn\u2019t 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\u2019t outwardly react to it like I used to.\u201d<\/p>\n<figure id=\"mag-03Autism-pullquote3\" class=\"interactive interactive-embedded  limit-small layout-small thisFigure\">\n<div class=\"interactive-graphic\">\n<div class=\"pullQuote\">\n<div class=\"future\"><\/div>\n<blockquote>\n<p style=\"color: black;\"><em><strong>\u2018When 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\u2019t really acceptable.\u2019 \u2014 Carmine DiFlorio<\/strong><\/em><\/p>\n<\/blockquote>\n<\/div>\n<\/div>\n<div class=\"footer\"><\/div>\n<\/figure>\n<p id=\"story-continues-19\" class=\"story-body-text story-content\" data-para-count=\"833\" data-total-count=\"38465\">Carmine\u2019s 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. \u201cWe were like: \u2018Oh, my god! He shared the cake! He\u2019s talking! He\u2019s doing better!\u2019 \u201d Carol said. But they quickly realized that most of his schoolmates were progressing far more slowly. \u201cI had that guilt,\u201d Carol said. \u201cHe was just climbing mountains, and the others weren\u2019t. 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, \u2018What are you doing that I haven\u2019t done?\u2019 And you have nothing to tell them.\u201d<\/p>\n<p class=\"story-body-text story-content\" data-para-count=\"1010\" data-total-count=\"39475\"><span style=\"font-weight: bold;\">For many parents,<\/span>&nbsp;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\u2019s trajectory, and researchers urge parents to keep the results in perspective. \u201cI see a lot of parents of 2-year-olds,\u201d Catherine Lord says, \u201cwho have heard stories about kids growing out of autism, and they tell us, \u2018I want my kid to be one of those kids.\u2019 \u201d 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. \u201cWhen you get too focused on \u2018getting to perfect,\u2019 you can really hurt your child. A typical kid fights back against that kind of pressure, but a kid with autism might not. It\u2019s fine to hope \u2014 it\u2019s good to hope \u2014 but don\u2019t concentrate so much on that hope that you don\u2019t see the child in front of you.\u201d<\/p>\n<p class=\"story-body-text story-content\" data-para-count=\"765\" data-total-count=\"40240\">Negotiating how best to raise a child with autism \u2014 or one who no longer has it \u2014 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. \u201cWe moved so no one would know, so people would approach him with an open mind,\u201d L. said. \u201cWe didn\u2019t even tell his teachers at the new school.\u201d In fact, L. and her husband didn\u2019t even tell B. about his autism until he was 12 or 13. When they did, he was shocked \u2014 dead quiet and shaken. L. said he asked, \u201cWhy didn\u2019t you ever tell me this?\u201d L. said, \u201cI didn\u2019t think you were ready to hear it.\u201d He responded, \u201cI don\u2019t think I\u2019m ready to hear it now.\u201d<\/p>\n<p class=\"story-body-text story-content\" data-para-count=\"298\" data-total-count=\"40538\">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\u2019s lives.<\/p>\n<p class=\"story-body-text story-content\" data-para-count=\"946\" data-total-count=\"41484\">B.&#8217;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\u2019t bring up autism with B., because they fear it might upset him \u2014 which is why L. refused to ask B. if he\u2019d 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. \u201cI 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\u2019ve told him many times that so few people have that outcome and that he\u2019s one of the lucky ones.\u201d<\/p>\n<p id=\"story-continues-20\" class=\"story-body-text story-content\" data-para-count=\"894\" data-total-count=\"42378\">Jackie\u2019s 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 \u201cMama\u201d and \u201cDaddy.\u201d<\/p>\n<p class=\"story-body-text story-content\" data-para-count=\"628\" data-total-count=\"43006\">His parents see him most weekends. During those visits, Matthew sometimes gets wiggly, which can be a signal that he wants something he doesn\u2019t have. Jackie will say, \u201cShow me,\u201d and hand him her smartphone, and Matthew will type a text. She showed me some of his recent messages: \u201cEat lunch. Chicken nuggets. Fries. Ketchup. Brownie. Ice cream. Cookies.\u201d And \u201cPeter Pan. Watch a tape.\u201d To communicate with her, he doesn\u2019t ask for her phone, or point to it, or reach toward it, or mime texting. He doesn\u2019t seem to understand that those are ways to express his wishes, despite 20 years of effort to teach him so.<\/p>\n<p class=\"story-body-text story-content\" data-para-count=\"531\" data-total-count=\"43537\">The idea that Matthew won\u2019t recover no longer pains Jackie. \u201cAt some point,\u201d she told me, \u201cI realized he was never going to be normal. He\u2019s his own normal. And I realized Matthew\u2019s autism wasn\u2019t the enemy; it\u2019s what he is. I had to make peace with that. If Matthew was still unhappy, I\u2019d still be fighting. But he\u2019s happy. Frankly, he\u2019s happier than a lot of typically developing kids his age. And we get a lot of joy from him. He\u2019s very cuddly. He gives us endless kisses. I consider all that a victory.\u201d<\/p>\n<p>Ruth Padawer&nbsp;is a contributing writer for the magazine; she teaches at the Columbia University Graduate School of Journalism. Editor:&nbsp;Ilena Silverman&nbsp;Source:&nbsp;<a href=\"http:\/\/www.nytimes.com\/2014\/08\/03\/magazine\/the-kids-who-beat-autism.html?_r=0\">NYT<\/a><\/p>\n<\/header>\n<\/article>\n<\/div>\n<\/aside>\n","protected":false},"excerpt":{"rendered":"<p>At first, everything about L.&#8217;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 [&hellip;]<\/p>\n","protected":false},"author":1,"featured_media":740,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_monsterinsights_skip_tracking":false,"_monsterinsights_sitenote_active":false,"_monsterinsights_sitenote_note":"","_monsterinsights_sitenote_category":0,"jetpack_post_was_ever_published":false,"_jetpack_newsletter_access":"","_jetpack_dont_email_post_to_subs":false,"_jetpack_newsletter_tier_id":0,"_jetpack_memberships_contains_paywalled_content":false,"_jetpack_memberships_contains_paid_content":false,"footnotes":"","jetpack_publicize_message":"","jetpack_publicize_feature_enabled":true,"jetpack_social_post_already_shared":true,"jetpack_social_options":{"image_generator_settings":{"template":"highway","default_image_id":0,"font":"","enabled":false},"version":2}},"categories":[37,3,9,31],"tags":[13],"class_list":{"0":"post-695","1":"post","2":"type-post","3":"status-publish","4":"format-standard","5":"has-post-thumbnail","6":"hentry","7":"category-aba-consultant-2","8":"category-autism","9":"category-consultancy","10":"category-press","11":"tag-aba-consultant","13":"post-with-thumbnail","14":"post-with-thumbnail-icon"},"aioseo_notices":[],"jetpack_publicize_connections":[],"jetpack_featured_media_url":"https:\/\/i0.wp.com\/aba-easysteps.co.uk\/wp\/wp-content\/uploads\/2014\/08\/mag-03Autism-t_CA1-articleLarge.jpg?fit=600%2C326&ssl=1","jetpack_shortlink":"https:\/\/wp.me\/p32ggE-bd","jetpack_sharing_enabled":true,"jetpack_likes_enabled":false,"_links":{"self":[{"href":"https:\/\/aba-easysteps.co.uk\/wp\/wp-json\/wp\/v2\/posts\/695","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/aba-easysteps.co.uk\/wp\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/aba-easysteps.co.uk\/wp\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/aba-easysteps.co.uk\/wp\/wp-json\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/aba-easysteps.co.uk\/wp\/wp-json\/wp\/v2\/comments?post=695"}],"version-history":[{"count":5,"href":"https:\/\/aba-easysteps.co.uk\/wp\/wp-json\/wp\/v2\/posts\/695\/revisions"}],"predecessor-version":[{"id":6178,"href":"https:\/\/aba-easysteps.co.uk\/wp\/wp-json\/wp\/v2\/posts\/695\/revisions\/6178"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/aba-easysteps.co.uk\/wp\/wp-json\/wp\/v2\/media\/740"}],"wp:attachment":[{"href":"https:\/\/aba-easysteps.co.uk\/wp\/wp-json\/wp\/v2\/media?parent=695"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/aba-easysteps.co.uk\/wp\/wp-json\/wp\/v2\/categories?post=695"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/aba-easysteps.co.uk\/wp\/wp-json\/wp\/v2\/tags?post=695"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}