Doctors had thought autism was irreversible. Now, new research suggests that one in ten autistic children sheds symptoms before adulthood
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 the age of 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 says. “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, exuberant boy back.
Together the women considered applied behaviour analysis, or ABA – a therapy that broke down every quotidian action into tiny, learnable steps, acquired through endless repetition; they rejected it, afraid it would turn their sons into robots. But just before B turned three, L and her husband read a new book by a mother claiming that she used ABA 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 and cheer, “Good boy!” Though she barely knew what she was doing, she said, “He still made amazing progress compared with anything before.”
Impressed with B’s improvement, both families hired ABA specialists from the University of California, Los Angeles (where ABA was developed), for three days of training. The cost was between $10,000 and $15,000. 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, 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 recruited and trained people to provide ABA 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. Within four months, he was looking at people even when he wasn’t soliciting help. Soon he learnt 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 fridge and howled till she happened upon the food he wanted; now he could point to grapes and get grapes. “It was thrilling. I couldn’t wait to get up each morning and teach him something new,” L says. “It was a huge, huge relief.”
B’s language blossomed. By the time he finished kindergarten, he was chatty and amiable, although he remained socially awkward, hyperactive and obsessed with the animal kingdom. Whatever his preoccupation of the moment, he would talk about it incessantly to anyone who would 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 favourite animal and noticed kids walking away, 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. 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 he was distressed, after a doctor assured them there wasn’t anything physically wrong with him.
“Jackie did everything for him,” L tells me, her voice filled with angst. “Everything. She tried just as hard as I did. She hired the same people, did the same work.” She was sure the behavioural 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 behavioural 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, pressurised rooms filled with pure oxygen and even chelation, the potentially dangerous removal of heavy metals from the body. But no evidence indicates 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 Lvaas, the pioneer of ABA, published a study in which he provided 19 autistic preschoolers with more than 40 hours a week of one-on-one ABA, using its highly structured regimen of prompts, rewards and punishments to reinforce certain behaviours and “extinguish” others. (An equal number of children, a control group, received ten or fewer hours a week of ABA.) Lvaas claimed nearly half the children receiving the more frequent treatment recovered; none in the control group did. His study was greeted with scepticism because of several methodological problems, including his low threshold for recovery – completing first grade in a “normal” classroom and displaying at least an average IQ. The therapy itself was also criticised, because it relied, in part, on “aversives”: sharp noises, slaps and even electric shocks. By the Nineties, after a public outcry, Lvaas and most of his followers abandoned aversives.
While subsequent studies did not reproduce Lvaas’s findings, researchers did find that early, intensive behavioural 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 past 18 months, however, two research groups have released rigorous 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 the age of 2) for nearly 2 decades and found about 9 per cent 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 teaches at Weill Cornell Medical College in New York, 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 per cent or more of their autistic patients no longer had symptoms.
The findings come at a time when in the US the number of autism cases appears to be climbing rapidly. The Centers for Disease Control and Prevention’s most recent study of 11 communities in the US found that 1 in 68 children has autism, up from 1 in 88 2 years earlier. (In the UK, it is 1 in 100, according to the National Autistic Society.) 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 aetiologies 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, such as the role of IQ: the children in Lord’s study who had a nonverbal IQ of less than 70 at the age of 2 all remained autistic. But among those with a nonverbal IQ 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 IQ who remained autistic. (Fein’s study, by design, included only people with at least an average IQ.) 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. 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 from Phoenix, Arizona, is another of the children in Fein’s study who no longer has autism. While he seems like a fairly typical geeky teenager now, it took years of hard work to get here. Just before he turned three, 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, seemingly impervious to pain despite the bruises spreading across his forehead.
Mark’s parents, Cynthia and Kevin, sent him to a nursery for developmentally delayed children, where he was placed in the highest-functioning class. But he 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 some day to institutionalise her only child.
In desperation, the Macluskies pulled Mark from school. They took out a $100,000 second mortgage so Cynthia could leave her job in human resources to work full-time with Mark, even though she was the primary breadwinner. She gave her son shots of vitamin B12 and started him on a dairy-free, gluten-free and soy-free diet. She read books on various behavioural 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 behavioural programme, on top of five hours a week of speech and occupational therapy.
They were difficult years. Early on, Mark would hurl eggs at the wall and pour milk on the floor, so the Macluskies padlocked the fridge. They emptied their living room of furniture, replacing it with an inflatable trampoline encircled by rubber walls so that Mark could whop against them to get the sensory input he seemed to need without hurting himself. They made it 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 flashcards.
By the time he turned eight, his speech and behaviour were on par with his 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 videochat. “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 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 Lttle House on the Prairie with Mark so he could practice reading facial expressions. “I remember it being so hard to answer my mum’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.”
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 practise socialising, Cynthia formed a robot club: Mark and four typically developing children, meeting 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 a robotics world competition. There he was partnered randomly with teenagers from Singapore and had to strategise 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 team-mates 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 says. “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.”
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 and subtle difficulties in explaining cause and effect. For Mark, the main remnant is his continued disgust at food that he considers slimy, like omelettes, 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.’ 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 University reveals just how malleable the autistic brain can be. Prior studies determined that autistic children show more brain engagement when they look at colour photos of toys than at colour 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 a randomised clinical trial published in 2012, she tracked two groups of autistic toddlers: one that received 25 hours a week of a behavioural therapy designed to increase social engagement, and a control group that received whatever treatments their community offered (some behavioural, some not). After two years, electroencephalograms showed that brain activity in the control group still strongly favoured 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 IQs 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 behavioural 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 behavioural 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 behavioural 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 behavioural therapy, including a boy named Matt Tremblay. Receiving an autism diagnosis at two, Matt received speech, occupational and physical therapy until he was seven or eight. But he wasn’t given behavioural therapy because, his mother recalls, the paediatrician never suggested it and the schools in their town in upstate New York didn’t provide it.
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.
Cognitive and behavioural gains came next, but mastering social skills was a long, difficult process. “I remember when I was little that I had a hard time pronouncing things,” Matt says. “It was hard to make my mouth listen to my brain. 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 realised 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.
These days, Matt is an affable, conversational teenager. 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 normality.
Mild echoes from Matt’s autistic days remain. He tells me he still can’t stand wearing tight or stiff clothes. And even though he’s a joker himself, by his own admission he occasionally has difficulty figuring out when someone else is kidding.
Some people reject the idea that eliminating autism is the optimal outcome. Author and animal scientist Temple Grandin, for example, 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.
“We don’t think it is possible to fundamentally rewire our brains to change the way we think and interact with the world,” says Ari Ne’eman, the president of the Autistic Self Advocacy Network, a US group run by and for autistic adults. “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.
Neurodiversity activists are troubled by the aspects of behavioural therapy that they think are designed less for the wellbeing of autistic people and more for the comfort of others. “Eye contact is an anxiety-inducing experience for us,” says Ne’eman. “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.”
Still, now that it’s clear some people really do shed autism, it is tempting for parents to hope their child’s autism might one day disappear. Researchers urge parents to keep the results in perspective. “I see a lot of parents of two-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 twenties and recently graduated from a select university. L told me that although he battled ADHD 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, 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 learnt 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 carers take him to swim in an indoor pool, where he squeals in 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”.
The idea that Matthew won’t recover no longer pains Jackie. “At some point,” she told me, “I realised he was never going to be normal. He’s his own normal. And I realised 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.”
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