|This is what
Autism looks like...
From the November 2003 Good Housekeeping
Three beautiful children. Three
very different forms of a mysterious disorder. Meet Miranda, Jack, and
Joey and hear about their trials and triumphs... and what the future may
BY MELISSA FAY GREENE
Miranda Grantham is a short and
serious nine-year-old, a driven little girl thumping around on flat feet,
the brown wisps of her layered haircut swinging as she goes. In a carpeted
upstairs playroom of her house, she moves silently and intently from fiddling
with the computer, which doesn't seem to be working, to riding a plastic
horse, to examining a handful of small identical dolls. Then Miranda returns
to the computer, which still isn't working. Finally, she stands up and
tries to steer her mom down the stairs toward the kitchen, as she
tromps along behind her.
In the kitchen, Miranda rummages
in the pantry, locates a can of Beefaroni, and wordlessly bangs it down
on the counter. Her mother, petite and pretty Sharon Grantham, warms a
bowl in the microwave and sets a place for Miranda at the kitchen table.
But the food sits untouched, for Miranda has turned and doggedly hiked
back up the stairs, a grimace of concern on her small face. There, she
will once again move from one object to another in her compulsive fashion.
When I first arrived at the Granthams'
house in suburban Atlanta, I met Miranda's younger sister, Kalie. A tall,
blond, and happy six-year- old, Kalie came in from her school bus, full
of news. ,"Miranda's the one with autism," she confided to me, as her mom
waited outside for Miranda's bus. "You can tell."
"How can you tell?"
"Oh, she has, you know, a cute little
nose and fluffy cheeks. Everyone thinks I'm the big sister." Then Miranda
came in and headed upstairs, and I saw that the little sister's words were
true: The first grader towers over the third grader and is her senior in
every possible way: physically, mentally, emotionally. If necessary, Kalie
acts as Miranda's defender when other kids begin to ridicule her.
No one knows exactly what Miranda
understands or sees or hears. Autism blocks off this child from the world--cutting
off her speech, limiting her social skills, and keeping her attention focused
on a few obsessive interests.
Maybe it feels to Miranda as if
her home is a maze of dark tunnels with occasional patches of light. Here,
in a circle of light, are her computer, her plastic horses, and her dolls.
Downstairs is her bowl of Beefaroni. Now she reappears in the kitchen,
seats herself, and shoves in some noodles, then stomps back upstairs.
"She's upset, I think," offers Sharon.
"I don't think she's sick. She is eating. Something at school may have
"Does she know why she's upset?"
"You sometimes don't know for sure,"
There is no simple test to confirm
autism. A recent surge in diagnoses has some experts debating whether the
condition is on the rise and, if so, why (see "Is There an Autism Epidemic?"
But what researchers have come to
agree on is that autism is a "spectrum" disorder. In other words, it's
not a condition with a single set of symptoms. Instead, affected children
face different challenges and there are different levels of severity. This
flies in the face of the media image of autism-Dustin Hoffman's monosyllabic
idiot savant in Rain Man, for example, or a child rocking back and forth
in a corner, refusing to make eye contact The experiences of families dealing
with autistic spectrum disorder (AS D) offer greater variety-and more
hope-than these grim stereotypes
Earlier diagnoses also have made
it possible for children to get started with aggressive therapies when
the brain is considered more "plastic"-more capable of change. Treatments
range from speech, occupational, and physical therapy to social skills
programs and counseling services that help these kids cope with stress.
All of this help is making a difference: Thirty years ago, an affected
child might have been institutionalized; today, children with autism remain
at home with their families and are integrated into their neighborhoods
and schools, with the chance of reaching much higher levels of academic-
Wanting to learn more about autism,
I spent time with three children who fit into different places along the
spectrum-and whose families, as a result, are struggling with different
problems. All of the children are being treated by Leslie Rubin, M.D.,
director of the division of developmental pediatrics and associate professor
of pediatrics at Emory University School of Medicine, in Atlanta. The mission
of Dr. Rubin, a gentle man with a long, pale face and glasses, is to help
parents accept that their child with autism is still their child, a small
person capable of love and happiness and sorrow. A parent said to me, 'I
used to worry about what he could not do,'" says Dr. Rubin. "'But now I
get excited about what he can do.'" While all of the parents I spent time
admitted to grief, disappointment,
and anguish over their child's diagnosis, they also spoke of times of great
pride, fun, humor, and love. None of the children I met was a little automaton
rocking in a barren room. Each is first and foremost a beloved child.
The Granthams - Sharon, a nurse,
and Walter, an attorney - lived in Chattanooga, Tennessee,. when Miranda
was born. Sharon's light-hearted country club life took a sharp off-road
turn when her baby's development fell out of sync with that of her friends'
babies. "Miranda had been born five weeks early, but I began to observe
all sorts of things that shouldn't have resulted from her being early."
Autism is not always evident in
infancy, although pediatricians consider certain behaviors to be possible
red flags: The baby does not babble, coo, or gesture by 12 months; does
not say single words by 18 months or two-word phrases by 24 months. Autism
diagnoses become more common in the third year, when children's language
skills should explode and their social skills emerge.
The most widely spread and damaging
myth about autism is that children are unable to give and receive affection.
Although the condition can inhibit a child's ability to express herself
physically, she can be as cuddly and huggable as her age-mates. That's
why Sharon kept rejecting autism as the reason for her daughter's problems,
for Miranda was loving toward both parents. It was Miranda's inability
to play with other toddlers that forced Sharon and Walter to confront their
fears. "She'd go running up to join a group of children, and then it was
like a wall would go up inside her," says Sharon. "She'd hang her head
and give up, or do something inappropriate, like dance a little jig."
The more Sharon and her husband
read about autism, the more they recognized their daughter. Miranda had
once spoken a few words, and now those were gone-a hallmark of ASD. By
age four, she was obsessed with researching what was the same and what
was different about objects. "She would gather three square blocks and
one round block and analyze them to death," says Sharon. "Outside she did
it with pieces of bark that fell off the trees. I mean, my friends' daughters
were playing dress- up, they were in preschool ballet, and my daughter
was sitting in the yard examining pieces of bark."
Of course it hurt. Of course the
other mothers no longer phoned to share information about the new gymnastics
class everyone was crazy about, or to ask, "Shall we trick-or-treat together?"
Then Sharon got hit from the other
side with a remark by Miranda's speech therapist. "I don't think it can
be autism, because Miranda loves me," Sharon had said.
"She doesn't love you," responded
the therapist. "Children with autism can show pleasure when they're picked
up from school, but that's not love."
Sharon was devastated. But after
taking Miranda to visit specialists around the country, she fell back on
what she knew for certain: She and Walter loved Miranda, and Miranda loved
them. Miranda's second speech therapist told Sharon she saw a wonderful,
loving, attached little girl ..... who had autism.
Following much research, the Granthams
moved to Georgia for a public school system that would include Miranda
in a typical classroom for part of her day. Now in third grade, Miranda
seems to feel successful in school. "We're very happy," says Sharon. "Miranda
has access to peers in ways that help her. She limits their normal behaviors.
She thinks of them as her friends." Every day, two children are chosen
from the regular classroom to eat lunch with Miranda, which is consoling
to her parents, who have seen how desperately Miranda has wanted, all her
life, to play with other children.
Home life with Miranda is, of course,
the only home life the Granthams have known. "Yes, we get a little testy
at times," says Sharon. "It takes a lot of preparation to have an outing
with both girls. But if I give in, if I stay home, it wins.
"Miranda, get ready-it's time to
go horseback riding," she calls. And Miranda drops her little dolls, stares
straight ahead for a moment, then huffs off to get ready.
Jack Mifflin, age five, has big,
round blue eyes in a wide, pale face. While Miranda Grantham is a small
mover and shaker, Jack is tentative and cautious. He is a watcher, with
a tremulous half smile. He and his parents and his younger brother live
in Snellville, Georgia, east of Atlanta, in a small house near a lake.
His dad, Robert Mifflin, is an engineer and a diesel mechanic, and his
mother, Jeanne, is a secretary and an office administrator.
Jack can say only a few word, though
he seems to understand everything said to him. The manufacture of speech
seems to strike this slightly bewildered little boy as too bold and dramatic
an act for him to risk. Robert tells his sons, "Bye-bye, I love you," every
day when he leaves for work, and Jack runs to the window to watch his daddy
get in the car and back out. Recently, Jack amazed and thrilled his parents
by replying, in slurred soft syllables, almost without L's, "I love you
Daddy I love you Daddy I love you Daddy."
"That is the closest to tears I
had ever seen that man," says Jeanne, a pretty, outgoing, and funny woman
with a head of blond curls.. "Robert came home from work that day with
his arms full of toys for both boys. '
"I was an old maid," she says, laughing.
"I met Mr. Right at 38, had my first child at 40, and my second at 42.
1 didn't have a clue about motherhood. I didn't know 'Itsy-Bitsy Spider".
I checked child-development books out of the library and learned that the
baby was supposed to smile by three months. Jack wasn't smiling. But when
he smiled at three-and-a-half months, I figured, bingo, that's it. At six
months the baby is supposed to sit up. Jack rolled over one time at seven
months, so I wrote down, "Seven months: rolled over". Two months
went by, and he didn't do it again. But I didn't know that doing something
just one time doesn't count. Autism never crossed our minds. He was my
little companion, a beautiful boy."
Jack was saying about 30 words by
18 months of age, but then his words began to disappear. Teachers at Jack's
preschool urged Jeanne to get him tested, but she tried to make light of
the situation, saying, "Speech delays run in our family." Jack was 19 months
old when his brother, Ronnie, was born, at which point Jack stopped making
eye contact with his parents. That really worried her. But when the staff
at the preschool mentioned autism, Jeanne "flipped out."
"I rushed home with him," she remembers.
"Our society is insane!' I told my husband. 'I will protect my child from
these maniacs. I'll teach him at home.' I went into hiding. I thought I
was to blame for Jack's delays because I didn't know enough about early-childhood
education. I subscribed to a mail-order homeschooling program and spent
three months drilling him."
Distraught over three-year old Jack's
lack of progress, even under her tutelage, Jeanne timidly tried Babies
Can't Wait, an early- childhood intervention program. Both the director
of the program and the lead teacher were sensitive and kind to her. After
a couple of months, the director took Jeanne by the arm and said,
"Let's talk about Jack. Let's have him tested."
Though all of the professionals
who knew Jack had been pointing in the same direction for a while, the
diagnosis of autism nevertheless came as a shock to Jeanne. "If you're
going to say to a mother, 'Hello, your child is autistic,' you don't then
show her the door. Counseling needs to follow. It throws your marriage,
your whole world, into chaos. I was picturing my son in a cold, dark room,
alone, rocking himself I panicked. I got depressed." What didn't
help was the chorus from friends: "But he's so cute~he couldn't be autistic"
or "It's probably because you're older parents."
Last year, the Mifflins enrolled
Jack in a special-needs preschool program within a nearby public school.
By the second week, a marvelous teacher had taught Jack to jump; by the
third week, Jack had learned to say "I want." Within a few months, he could
say words like eat (while pointing at a restaurant) and mommy. Jack can
now imitate the movements of others, combine words ,to form simple sentences,
and sat yes appropriately. He is making gains in eye contact, listening,
and responding when someone calls his name.
Equally encouraging to the Mifflins
was that Dr. Rubin approved of them as parents. "Dr. Rubin knew that we
had taken very good care of Jack," says Jeanne, "and that meant a lot to
us. He puts Jack in the middle of the mild-to-moderate range." What is
life like in the middle of moderate? It's rather quiet. The only bedlam
on the afternoon I visited came from Ronnie, who wasn't in favor of a nap.
Jack is a pure innocent: obedient, trusting, timid. With the endless support
of his parents, he has become emboldened enough to put his hands to a few
things around the house. A Brio train track is set up for him in his parents'
bedroom, and he softly pushes the little wooden trains. When told
it is his naptime, he takes little steps to his bedroom and gently shuts
the door. "He's the nicest kid you'll ever meet," says his dad. "What I
worry about is a bully bothering him."
Of course, they worry about more
than that. They want Jack to be a regular boy; they want him to grow up
to be a normal man, to have a career and a family. They are hopeful.
"It's critical for families to hope
that their child will progress, to see the therapies as ways to begin unlocking
their child's secrets," Dr. Rubin says. "In school we don't want the teachers
putting the kids in classes for the 'moderately disabled' and leaving them
there. We want teachers to draw the kids out of themselves; we want them
to wonder what the kids could do if given the right interventions."
And what of the future for Jack?
" We obviously cannot ever predict accurately how anyone will turn out,"
says Dr. Rubin. "We definitely expect Jack to continue to make progress
toward an independent and productive life."
"Dr. Rubin has made us realize we
weren't at the end of the road," Robert Mifflin says. "We're always reaching
out for hope."
Joey Simonetti is a handsome Italian-American
kid, age 12, a whiz on his bike in the cul-de-sacs of his neighborhood
in Duluth, Georgia, north of Atlanta. He has a lean face and build, a ridge
of glossy brown hair, and dark eyes behind long lashes. His beloved cat
is Frankie, named for Frank Sinatra.His father, Joe, is a mechanical, marine,
and industrial engineer who spent much of his career in aviation; his striking
and well-spoken mother, Marianne, is a public school music teacher who
opted to take a few years off and sing to her baby son.
Joey spoke so early that his awed
parents, at least once a day, looked at each other and either said aloud
or thought, "Wow!" At five months, Joey was saying "mommy" and "daddy".
" As a toddler, he liked to sit and watch shows on the Discovery Channel,"
says Marianne. At the age of four, he turned to his mom and said, "Tomorrow
is a yesterday that hasn't happened yet, is that right?" Among the
relatives and friends with whom they shared stories about Joey, the consensus
was: "Joey is the next Einstein, the next Mozart."
"I was on top of the world," says
Marianne. "When Joey was two, he was fascinated by fans. Wherever we went,
we have to explore until we found a ceiling fan or a window fan. He was
also fond of vacuum cleaners. His favorite outing was for me to take him
to Caldor and walk up and down the aisles with him, reading the vacuum
cleaner descriptions." Joey's favorite read aloud book at bedtime
was a manual about transistor radios. As his mother nodded off over the
incomprehensible technical jargon, Joey lay back on his pillow, wide-awake
and thrilled, taking it in.
"I love antiquing," says Marianne,
"so Joey and I visited shops together. He discovered they had fans! For
his fourth birthday, I said, 'Joey, let's go to Toys "R" Us and we'll pick
out a special present for you.' He asked if we could go to an antiques
store instead, and he picked out his first antique fan." He became an aficionado,
as well, of antique radios. For Halloween, several years in a row, Joey
insisted upon dressing up as either a fan or a radio.
Joey has warm relationships with
antiques dealers around the region, who give him a call if something interesting
comes into their shop. None of them has a clue that Joey Simonetti, like
Miranda Grantham and Jack Mifflin, has received a diagnosis of autistic
spectrum disorder. When Joey was four, Marianne enrolled her little prodigy
in preschool. She went to pick him up that first day, thinking something
along the lines of, I'm quite sure he knocked their socks off.
Joey had, indeed, deeply impressed
his teachers, but not in the way Marianne predicted. "At the end of his
very first two-and- a-half-hour preschool day," Marianne remembers, "the
teacher came up to me and said, 'This child needs to be on medication.'
"I said, 'What? Are you talking
to me?'" Marianne says she actually glanced over her shoulder to see which
poor parent was receiving this awful report. But the teacher was
looking at her and saying more: "Please do not send Joey back this month."
The teacher described a child out
of control, oblivious to directions, defiantly acting out, jumping on the
tables, bothering other children, completely disruptive in every
way. Marianne took Joey home, where he was the same engaging little fellow
she knew. She and Joe puzzled over the teacher's report for a long time,
unable to make sense of it.
They moved Joey to a public preschool.
The teachers there spoke more tactfully but were on the same terrain: "Let's
have the team evaluate Joey. We're seeing some red flags here, some atypical
The Simonettis, like the Granthams,
like the Mifflins, went the round of pediatric specialists. Joey's extraordinary
sensitivity to sounds and images helped the doctors make the ASD diagnosis
and helped his parents begin to understand his behavior in preschool. Here
was a child attuned to the tiniest detail, and then you add the chaos
of 20 preschoolers with their chairs and their art supplies and their zippers
and now it's time for music, let's clap hands, and buzzers are buzzing,
pages are turning, kids are walking by in the hall outside: Joey
was completely overwhelmed. Drowning in a tidal wave of chaotic sensory
input, he sometimes couldn't begin to follow the teacher's directions;
her voice was lost in the blizzard of noises.
* * * * * * * * * *
IS THERE AN AUTISM EPIDEMIC?
The news that the state of California
alone had documented a 273 percent increase in autism from 1987 to 1998
was a shock felt across the nation by parents and doctors alike. And even
apart from the California study, data shows that the numbers have risen
from one child in 2,000 before 1970 to one in 290 or even one in 250 today.
Is autism on the rise, and what is causing it?
Both questions elude definitive
answers. Explains Susan Folstein, M.D., director of the Autism Genetics
Research Cooperative and professor of psychiatry and genetics at the Tufts
University School of Medicine, in Boston: "When people talk about the numbers
rising, they are talking about increased numbers of diagnoses of autistic
spectrum disorder-the criteria for which is much broader than for classic
The higher numbers are misleading,
agrees Leslie Rubin, M.D., director of the division of developmental pediatrics
at Emory University School of Medicine, in Atlanta. "As public and professional
awareness of the condition has increased and programs have multiplied,
more children are coming into the system than ever before. They are receiving
diagnoses of autism rather than, say, mental retardation." In fact, as
numbers of autism cases have risen, diagnoses of mental retardation have
As for the cause of autism, Dr. Folstein
says it is largely genetic but not traceable to a single gene, as in, for
example, cystic fibrosis; more likely there are ten to 20 genes interacting
in unknown ways. Dr. Folstein and her colleagues are now looking for genetic
variations that predispose a person to autism.
Some of the most interesting new
research into autism links it to brain size. Experts say that it's an early
warning sign if an infant's head expands to larger than normal circumference
by age one-in essence, the child's brain is growing too fast. This discovery
could lead to earlier diagnoses and interventions.
* * * * * * * * * *
"Did I do this? Did I do this to
him?" wept Marianne, whose image of herself as the talented mother of a
gifted child had just gone sour. "At first, we thought maybe he'd outgrow
it," says Joe Simonetti. "We paid for all the testing out-of-pocket, so
no paper trail would follow him." It had to be a fluke, they thought, not
something that ought to appear on his college application.
But one friend said: "Look, this
is the same child you've had all along; they've just put a label on him."
With that, says Joe, "we began to think, All right, we were given this
child for a reason. We're going to help him get through this."
Joey was placed in a developmental
preschool, where he befriended children with severe mental retardation
or paralyzing cerebral palsy. But while Joey was asking his parents questions
like "Why do objects get denser as they approach the speed of light?" he
was being taught topics like "What do we do in a grocery store?"
He was moved to a regular public
school kindergarten, accompanied by an aide, but that was a disaster. The
stimulation was still too great, and his teacher was impatient. "I went
in,to observe one day, and I saw the teacher get fed up and shake Joey!"
says Marianne. "I've never forgotten that, and, what's worse, Joey has
never forgotten. It was the start of a rough time for him in school. They
labeled him "emotionally disabled" and urged us to start him on Ritalin".
At the mild end of ASD is Asperger's
Disorder. An Austrian physician, Hans Asperger, first described it in 1944.
Children with Asperger's tend to be bright and to want to acquire an in-depth
knowledge about a specific subject. They can be extremely articulate but
converse more easily with adults than with peers. Tending to have difficulty
with ordinary social interactions, they may expound on their area of expertise
in a pedantic way or behave inappropriately because of anxiety. The children
may also be oversensitive to stimuli and have difficulty with motor coordination.
"Getting the Asperger's diagnosis gave us a few tools", says Joe. "The
bad news is that the disorder itself is still being defined.- it's
one for which you just treat symptoms without getting at the cause".
Joey now attends sixth grade in
a public middle school: half his day is spent in a regular class with an
aide; the other half in a special-ed group. "It's absolutely fascinating
to see a room of Asperger's kids," says Marianne. "Every one of them has
some special interest absorbing all his attention: This one loves train
schedules, that one is interested in weather, over there, he knows everything
about the Titanic." Other documented cases of Asperger's have included
children with heightened, obsessive interest in doorknobs, hinges, French
literature, bus maps,
meteorology, astronomy, the Civil
War, and cappuccino.
Joey, with his antique radios and
his antique fans, clearly had found his niche. But it is not the niche
his parents want for him. The possibility of high professional achievement
for Joey is good; indeed, when asked what he wants to be, he replies,
"I want to work on the Human Genome Project and isolate the DNA responsible
for Asperger's and repair it." Dr. Rubin describes Joey as child
with "great intellectual potential." But his parents want a well-rounded
life for their smart son; they want I him to have friendship and love,
a wife and children.
When I visit with the Simonettis
on a bright, windy Sunday, Joey is a congenial host. He instantly shares
with me his latest passion: a collection of dice. He takes me on a tour
of his room, showing off his 47 antique fans, his clocks and radios. If
Joey's had a good week at school, his mother takes him antiquing on Friday
afternoons. "He's a very thoughtful collector now," Marianne says.
Joey stays upstairs to play with
Pokemon cards with his younger sister, Gabrielle, nine. "Oh, Pokemon,"
I groan to his mom. "No, we're happy about Pokemon!" says Marianne. "And
Game Boy too. We're just happy he found something he can talk about with
other kids; It bridges the difference." Last Halloween he trick~or~treated
as a Pokemon character, not as a fan or a radio.
I share my disbelief with Joey's
parents that the kid has a thing wrong with him. They smile wearily. "When
Joey's under stress, it comes out," says Joe. "He can be wacky. He'll contort
his face, make weird sounds, do hand flapping. When he's stressed, he loses
While downstairs with the Simonettis,
I begin to hear strange noises from upstairs-grunting sounds, whooping
calls. The parents look at me, smile, and nod. "We've worked really hard
with Joey on making eye contact, with shaking hands, with paying attention,"
says Marianne. "We had to break each of these skills down into smaller
A few days ago, Joey Simonetti made
up a joke. "Welcome to Happy Burger!" he greeted his mother. "Today we
have hamburgers, cheeseburgers, and Asperger's. What would you like to
Unsure of the right answer, afraid
to hurt his feelings, Marianne,hesitated. then asked, "What's good today?"
"Oh, I highly recommend the' Asperger's;
'All right, I'll take the Asperger's,"
"Then you get me!" he yelled, and
jumped into his mother's arms.