Autism’s little brother
For kids like Ben, leading a normal childhood becomes a wrenching struggle, due to Asperger’s Syndrome. And it isn’t easy on the neighbors.
As a youngster, Ben struggled desperately to make friends. He couldn’t understand what was wrong with breaking rakes and hoes into swords for play fighting. If he hurt a child with a good, sound whack, he couldn’t understand the resulting animosity. If he wanted to join a basketball game, he couldn’t bear to play by the rules and would scream and fight for a chance to shoot. Techniques that might have smoothed over such interactions, such as humor or empathy, were not among his strengths.
Kids live by their own complex social rules, said Ben’s mother, Elizabeth Stevenson. (She has chosen not to reveal Ben’s last name, which differs from hers.) What’s cool and what’s not, and whether something should be referred to as “the bomb” or “tight” are all up for minute-by-minute re-evaluations, but such understanding was beyond Ben. He couldn’t take a joke gracefully or shoot one back; he was sometimes hostile and regularly wrong about what other kids expected of him. As one neighbor said, “Ben invited bullying.” As a member of a very tight neighborhood community, he could never avoid the spats and fights that erupted around him. As he headed toward adolescence, he grew increasingly depressed.
Ben couldn’t understand the social rules that simplified everyone else’s life, but no one could fully understand what rules governed his life, either. If Ben wanted to talk endlessly about Legos, other boys were offended that he couldn’t care less about what they had to say. If his parents repeatedly had to stop his destructive behavior, people got the idea that Ben was the victim of bad parenting.
The boy had been diagnosed with attention deficit hyperactivity disorder (ADHD) at age 5, but his social skills seemed to be more like those of a child with autism, yet he was obviously intelligent. It wasn’t until age 10 that Ben was diagnosed with something more: Asperger’s Syndrome.
Though controversy surrounds almost every detail of Asperger’s, it’s generally defined as a highly functioning form of autism characterized by an overwhelming and varied collection of symptoms: oversensitivity to sensual stimuli, including scratchy clothing and eye contact; an inability to interpret non-verbal cues, such as facial expressions; a tendency to become obsessed with inanimate objects, such as cars or household appliances; an interest in focused, detailed behaviors; and an almost tragic lack of social skills—all imposed upon people with normal to above-average intelligence.
Ben’s diagnosis did give his problem a name, something the family could address, but it also led to a shakeup in his community. Ben’s family has lived in Southside Park Cohousing, a community that thrives on social interaction between neighbors, since he was 2 years old. Ben had always been the “difficult kid,” but his diagnosis turned him into a difficult kid afflicted with more than just willful boyhood defiance.
Stevenson said she doesn’t know how she would have survived Ben’s childhood without the support of her co-housing community, but she also remembers when some of her well-meaning neighbors were as much a part of the problem as the solution.
“We didn’t know what we were dealing with,” she said.
In 1993, Stevenson, her husband, Roman, and Ben moved to Sacramento and snatched up one of the final homes available in Sacramento’s brand new co-housing development on T Street downtown. Twenty-five units surrounded a common house that acted as a community center, shared dining room, laundry facility and boardroom for the difficult business of governing one property owned by 25 families.
After 10 years, the development has matured. Poppies and rose bushes border a shared yard, and the condominiums all are painted in bright colors. The open spaces are big enough for a rowdy game of tag, a garden of spring peas and tomatoes and a small playground.
Co-housing embraces the idea that neighbors should know each other and interact regularly, so, on warm spring days, folks can be found cleaning out the carport together, crossing paths at the mailboxes and inviting each other’s children into their games. They share chores, such as the cooking of communal meals; assets, such as the single lawnmower; and duties they may not have anticipated, such as helping to parent each other’s kids.
Stevenson admits that the early years weren’t all that idyllic. “A bunch of white liberals don’t necessarily have all that much in common,” she said flippantly. She jokes that co-housing is the most expensive course in personal growth that a person can take.
Stevenson learned that social interaction was more complex than she thought and that when conflict erupted, she sometimes was part of the problem. Other neighbors may have come to the same conclusions after dealing with Ben for 10 years.
For Ben, co-housing always has had its pluses and minuses. Though kids with Asperger’s can become over-stimulated in crowds, they also can slip away into isolation after failing to fit in. Ben got to practice social interactions whether he wanted to or not, and his neighbors practiced with him, whether they wanted to or not. Now, at 12 years old, Ben is much more social and playful than the typical Asperger’s kid.
On a recent evening, Ben wrestled his 6-year-old sister, Emma, to the ground in one of the communal rumpus rooms and then lay on his back and let the girl crawl all over him. At 5 feet 9 inches, with short, dark hair combed over his forehead and only a little baby fat left, Ben looks much older than he is, but he still has a child’s expressive face. Looking adoringly at Emma, he made a list of what he’d learned in school: 101 ways to get away from bratty little sisters, 202 ways to avoid bratty little sisters … 3003 ways to move away from your parents.
Ben may have a history of misinterpreting vocal cues, but he uses them naturally. Even as he teased Emma, his voice was sweet and indulgent, and the little girl rarely stopped laughing.
“You’re not King of the World yet,” she cried, jumping on him once more.
Stevenson sat comfortably on the couch, throwing in the occasional one-liner and enjoying the scene—until Ben lifted Emma up and tossed the laughing girl carelessly into a pile of beanbag chairs. Stevenson warned that he was being too rough, but Ben hoisted his sister again.
“One,” said Stevenson, her voice rising. Ben lifted the little girl higher. “Two,” she said, with anger. Slowly, Ben switched gears and put Emma down. The girl scampered around without the slightest concern.
“Sometimes,” said Stevenson, her voice returning to normal, “he just needs an outside reminder.”
Two years ago, the boy never could have followed that countdown, which universally means “stop, or you’re in trouble, mister.” But the Asperger’s diagnosis kicked off two years of experiments with diet and medication that have helped Ben develop a greater self-control, which has improved his interactions with others.
Before the diagnosis, Ben was having the worst year of his life, said Stevenson. In school, he was over-stimulated by the 33 kids who shared his classroom. Anxious, he would flee from the room randomly or do just the opposite and crawl under his desk. Or, he’d hit someone. It wasn’t anger, said Stevenson, as much as anxiety.
Things were bad at school, but they weren’t any better at home. Still unable to mimic the acceptable behaviors of his peers, at 10 years old, Ben would scream at the top of his voice still whenever he saw a spider.
“Come off it,” one neighbor thought to herself. “You’re just trying to get attention.” Pam Silva, who lives upstairs from Ben, remembers it getting so bad that Ben and his family began hiding inside their home.
Ben seemed lost all the time, Silva remembers, unaware of his body so that he’d bump into things. He seemed directionless and physically destructive. The boy was always big for his age and was what his mother referred to as “monster strong,” and he would pick up sticks and swing them randomly wherever he went.
“He broke the clothesline over and over again,” said Silva.
The community responded to Ben in various ways. Some of them blamed Stevenson. Some of them tried to train him, peppering their angry lectures with the line, “Look at me when I’m talking to you!” Some of them routinely marched Ben home to his mother.
“In co-housing,” said Silva, “everyone watched you live your life. They felt they had the right to comment, to parent Ben.”
The thing that hurt most, said Stevenson, was a Christmas card she received from a neighbor; inside was information about where to find parenting classes. It became clear that neighbors had identified Stevenson as the root of Ben’s problems, just as in the past when “cold mothering” was considered the cause of autism.
Desperate, Stevenson turned to her father, a school psychologist on the East Coast who reviewed Ben’s symptoms and suggested he be tested for Asperger’s.
The test was two-pronged, said Stevenson. One doctor took an extensive history, focusing on Ben’s health, cognitive abilities and emotional life. Then, an Asperger’s specialist conducted two brain scans that plotted which portions of Ben’s brain were activated for simple, focused tasks.
After reviewing the scans, said Stevenson, it looked as if the part of Ben’s brain that should perform simple tasks subconsciously lay nearly dormant. Instead, Ben was consciously thinking through behaviors that should have come naturally. The result was that it was impossible for Ben to think about the content of a social interaction, such as a conversation or a game, and simultaneously read the infinite number of verbal and non-verbal cues that accompanied it. The conscious part of his brain couldn’t handle the overload.
Stevenson shared the diagnosis with her neighbors one on one, but when she found an episode of ABC’s PrimeTime that focused on Asperger’s, she realized she’d found something the whole community would understand at once. On the screen was a kid who looked just like Ben, she said, who bumped into things, could look at people only indirectly and was pedantic by nature.
Stevenson called a meeting and presented the video.
“It was very hard,” said Stevenson. “If you live in some place for 10 years, the people you live with expect you to be the same person over time.” With the video, Stevenson was asking her neighbors to rethink their opinions about Ben’s behavior and hers.
Silva said she just looked at the screen and broke into tears. The similarities were so obvious, and she was one of those adults who’d assumed Ben was acting out just to get attention.
Recognizing the problem was part of the solution. Stevenson followed up by explaining what Ben could and couldn’t do. He can listen, or he can look at you, she told them, but if he tries to do both, his brain shuts down. She also asked for her community’s help. If they had problems with Ben, said Stevenson, she wanted to hear about it, no matter how uncomfortable it might be.
Two years after that meeting, a new peace exists between Ben, his family and his community. At a recent meal, Ben snacked on apples while Stevenson sat in front of a plate of chickpeas and cabbage and looked out the floor-to-ceiling windows that surrounded the communal dining room.
“That’s beautiful,” she said, watching her daughter and a neighbor.
Outside, Emma was standing squarely in the middle of a picnic table with her arms held out. A neighbor carefully applied mosquito repellent to the girl’s bare feet, rubbing it around her ankles. She sprayed Emma’s arms and then sprayed her own hands and touched them gently to the little girl’s cheeks, looking after Emma as if the child were one of her own.
Ben may never have been nurtured in quite the same way, but his neighbors regularly comment about the extreme, positive changes in his behavior. They notice his strengths now, his vivid imagination and his ability to focus on complex tasks.
Though Ben had trouble integrating into his community because he was not “normal,” his condition actually becomes more common all the time. Though it mystifies doctors, more and more diagnoses of “autism spectrum disorders,” including Asperger’s, are popping up every day.
“A genetic disease should not grow day to day,” said Stevenson. “Something in the environment is making them sick.”
Some theories blame childhood immunizations; others blame pollution. Scientists haven’t been able to agree, partly because the science hasn’t caught up with anecdotal evidence yet.
“We have such filthy diets,” said Stevenson. “As our houses get cleaner, everything else gets dirtier.” In her opinion, America could empty out its jails if it correctly diagnosed the disorders that affect inmates, fed them a healthy diet full of fresh vegetables and offered them the right meds.
Those are the three things that have affected Ben’s behavior most. Medication is one of the more controversial.
“None of these drugs have been tested on children,” said Stevenson.
Ben takes a combination of stimulants and anti-depressants, and though drugs seem a risky prospect, Stevenson has decided that whatever improves her child’s quality of life is worth the gamble. She hopes to wean him off over time.
In Ben’s case, diet may have played an even bigger part than medication. Stevenson has joined her son on an experimental diet free of wheat and dairy. The theory behind this treatment is that people with Asperger’s seem unable to process certain proteins that act like opiates on the brain. One of Ben’s doctors suggested that the shallow depressions that showed up on Ben’s brain scan indicated his intolerance for these foods. Though the diet theory is another one that’s caused great disagreement, Stevenson is convinced that both her life and Ben’s have improved because of it.
“He was like a junkie around food,” said Stevenson. When she took away the things he craved, his cravings quickly dissipated, and without these foods, Ben’s behavior quickly improved.
Sally Ozonoff, associate professor of psychology at the M.I.N.D. Institute in Davis, said there’s very little research either to support or deny the theory that dietary restrictions help. Two or three tests have been done, she said, but they failed to meet even the basic criteria for good science. In her opinion, changes in diet are fairly benign. So, if parents want to try it, she won’t discourage them. “We don’t know it doesn’t work,” she added.
In Ben’s case, even the skeptics are convinced. Ben’s father, Roman, was very much against the idea of a restricted diet, but he said that in less than a week, what looked like an unusually long string of good days became a consistent pattern. Stevenson was even more quickly convinced. “Within 24 hours,” she said. She remembers Ben picking up a fork as if he’d never seen one before, and eating normally. It was the first time he’d eaten with a fork without constant reminders.
Asperger’s Syndrome first was identified in the 1940s, but it has only come into fashion as a diagnosis in the last decade. In spite of all the attention it’s getting, there’s a great deal of controversy about even the basics of the disorder.
Some suggest that the syndrome is nothing more than a set of normal personality traits seen in the extreme. Some very successful scientists, business people and engineers can be said to be focused, technically minded, and yet socially inept.
Ozonoff said experts do think of such disorders as part of a continuum that “shades into normal.” But depression and anxiety also can shade into normal, she said, or they can be debilitating.
In Ben’s case, the combination of medication, diet and diagnosis seems to have reversed a downward spiral. The boy is less depressed, is better able to control his impulses and can even look strangers in the eye tentatively. He’s even improved in school, now that his diagnosis has helped him get into the non-public Northern California Preparatory School that caters to kids with emotional and behavioral problems.
On a recent afternoon, Ben sank into a pile of beanbag chairs and stretched his arms and legs out as if exhausted. He was complaining about the no-touching rule at school while idly tapping at one of Stevenson’s shoes with his bare foot. Like many of his interactions with his mother, this one was gentle, trusting and playful.
The no-touching rule may have been unpopular, but Stevenson saw an upside.
“What can’t happen?” she prompted Ben.
“No beat-ups,” said Ben solemnly, puffing out his cheeks. Even the thought of his previous life can make Ben immediately sad.
In his first special-needs school, Ben had to be restrained when he became disruptive. Students at his school now “take space” when they get upset. They sit alone at a picnic table and wait to speak to their therapists, “if they’re available,” said Ben, sounding slightly put out.
Principal Daneen Johnson described the strategy in more detail.
While sitting away from the class for 10 minutes, a child on the verge of acting out answers a number of questions about what upset him. Once he’s chosen an appropriate response, the student can rejoin the class, having made a calm, informed decision not to have a meltdown.
Though Johnson says it’s still hard for Ben to sit through classes without taking space, she sees definite improvement.
The boy whom she once saw walking around the perimeter of the school by himself during breaks now hangs out and plays comfortably with a group of friends.
His relationships at home have improved, as well. Though his best friends live away from Southside Park, Ben can play video games with his neighbors, share meals with them and accept, with brave humor, the fact that whenever they play football, he’ll always be the one who gets tackled.
“I’m usually the punching bag,” he said with some amusement.
Ben also has developed a sense of humor. Stevenson said she intentionally ribs him, to make him comfortable with the idea that teasing doesn’t always have to be hurtful. It’s helped Ben become a charming, funny and intelligent communicator, especially with adults.
“Adults don’t reject you if you’re a little weird,” said Stevenson.
At first, Stevenson feared that the improvements she saw were only wishful thinking. But then her neighbors began to notice. Now, Stevenson’s not even sure if Ben would still qualify as an Asperger’s kid. She’s not willing to retest him, though. The diagnosis opened the door to services like the Northern California Preparatory School.
Though Stevenson’s neighbors may have occasional conflicts with Ben still, they understand him better. In the meantime, the community has decided that even the most normal kid needs special attention sometimes, so now parents regularly take a few minutes at meetings to describe for their neighbors what their own kids are going through.
One girl, Stevenson remembers, sometimes felt like a girl but sometimes felt like a boy. Her parents took a few minutes to explain because they didn’t want their daughter to be embarrassed every time someone new noticed her gender bending.
Another child, Silva remembers, was not just smart but was unusually good at memorizing. Her parents wanted the community to know that the toddler was dying to be asked to recite the 30 jokes she’d recently learned.
On Ben’s 12th birthday, he wore a new pair of big, black shoes with embedded wheels to his birthday party at the common house. Three of his best friends, all of whom have Asperger’s, met him there.
Stevenson, the mother of a smart kid, made a slightly lopsided cake decorated with the numerals “7” and “5.”
“Congratulations on turning 75!” yelled one of Ben’s friends.
Stevenson stood at the head of the table and gave the kids a look, as if to say they all should have been smart enough to figure this one out. “What’s seven plus five, Ben?” she asked.
Over cake, the kids pulled out their best risqué “your mama’s so fat” jokes, and Stevenson teased the boys until they changed the tone of their conversation.
“OK,” said one. “You’re so tall that your anus is millions of miles from the Earth!” The other boys cracked up.
Every kid at the table got the reference to the planet, but that didn’t stop one young boy from quickly and inexplicably rattling off every detail he could remember about Uranus, including exactly how far away it was and what it looked like.
“So?” asked his friends.
But really, they understood why one of their own would be aware of these details and ready to share them. Asperger’s kids often study subjects obsessively, and all of them have quirks and unusual skills that make them stand out. The youngest in Ben’s group of friends even discovered for himself that he had Asperger’s, by doing reports and research on the subject.
“I’m no savant,” he said, knowingly, “but I can process information really quickly.”
As a group, the kids seemed slightly brainy, a little ungraceful at times, but very close to normal. They were almost indistinguishable from any other bunch of rowdy, hyped-up kids at a birthday party.
The whole affair was a manifestation of what Ben called the “greatest aspect of my life.” He explained that his great “home life” included his family, but only secondarily. What really defined the greatest aspect of Ben’s life?
“I have friends now,” he said.