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