The Kids Who Beat Autism
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.”
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.”
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 a randomized 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’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.
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.”
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 much less 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.”
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.”
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