This is what Autism looks like... 

From the November 2003 Good Housekeeping Magazine 
 
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 hold. 
 
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 upset her."
 
"Does she know why she's upset?" I ask.
 
"You sometimes don't know for sure," Sharon replies.
 
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?" page 242).
 
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 suggest.
 
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- and social-achievement.
 
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 with
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 behavior."
 
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 autism."

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 declined.

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 control." 
 
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 component parts."
 
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 order?"
 
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; said Joey.
 
'All right, I'll take the Asperger's," said Marianne.
 
"Then you get me!" he yelled, and jumped into his mother's arms.