As a youngster, Ben struggled desperately to make friends. He couldnt
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 couldnt understand
the resulting animosity. If he wanted to join a basketball game, he couldnt
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 Bens mother, Elizabeth
Stevenson. (She has chosen not to reveal Bens last name, which differs from
hers.) Whats cool and whats 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 couldnt 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 couldnt understand the social rules that simplified everyone elses
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
couldnt 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 wasnt until age 10 that Ben
was diagnosed with something more: Aspergers Syndrome.
Though controversy surrounds almost every detail of Aspergers, its
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.
Bens diagnosis did give his problem a name, something the family could
address, but it also led to a shakeup in his community. Bens 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 doesnt know how she would have survived Bens 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 didnt 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 Sacramentos 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 others
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 others kids.
Stevenson admits that the early years werent all that idyllic. A bunch of
white liberals dont 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
Aspergers 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 Aspergers 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 childs expressive face. Looking adoringly at Emma, he made a
list of what hed 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.
Youre 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 youre in trouble, mister. But the Aspergers
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, hed hit someone. It wasnt anger, said Stevenson,
as much as anxiety.
Things were bad at school, but they werent 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. Youre 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
hed 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 Im 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 Bens
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 Bens symptoms and suggested he be tested for Aspergers.
The test was two-pronged, said Stevenson. One doctor took an extensive
history, focusing on Bens health, cognitive abilities and emotional life. Then,
an Aspergers specialist conducted two brain scans that plotted which portions
of Bens brain were activated for simple, focused tasks.
After reviewing the scans, said Stevenson, it looked as if the part of Bens
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 couldnt handle the overload.
Stevenson shared the diagnosis with her neighbors one on one, but when she
found an episode of ABCs PrimeTime that focused on Aspergers, she
realized shed 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 Bens
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 whod 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 couldnt 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 communitys 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.
Thats 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 girls
bare feet, rubbing it around her ankles. She sprayed Emmas arms and then
sprayed her own hands and touched them gently to the little girls 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 Aspergers, 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 havent been able to agree, partly because the science hasnt 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 Bens 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 childs
quality of life is worth the gamble. She hopes to wean him off over time.
In Bens 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 Aspergers seem unable to
process certain proteins that act like opiates on the brain. One of Bens
doctors suggested that the shallow depressions that showed up on Bens brain
scan indicated his intolerance for these foods. Though the diet theory is
another one thats caused great disagreement, Stevenson is convinced that both
her life and Bens 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,
Bens behavior quickly improved.
Sally Ozonoff, associate professor of psychology at the M.I.N.D. Institute in
Davis, said theres 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 wont
discourage them. We dont know it doesnt work, she added.
In Bens case, even the skeptics are convinced. Bens 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 hed never seen one before, and eating
normally. It was the first time hed 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 its getting, theres 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 Bens 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. Hes
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 Stevensons 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 cant 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 theyre
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 hes chosen
an appropriate response, the student can rejoin the class, having made a calm,
informed decision not to have a meltdown.
Though Johnson says its 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, hell always be the one who gets tackled.
Im 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 doesnt always have
to be hurtful. Its helped Ben become a charming, funny and intelligent
communicator, especially with adults.
Adults dont reject you if youre 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, Stevensons not even sure
if Ben would still qualify as an Aspergers kid. Shes not willing to retest
him, though. The diagnosis opened the door to services like the Northern
California Preparatory School.
Though Stevensons 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 didnt 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 shed 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 Aspergers, 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 Bens 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. Whats seven
plus five, Ben? she asked.
Over cake, the kids pulled out their best risqué your mamas so fat jokes,
and Stevenson teased the boys until they changed the tone of their conversation.
OK, said one. Youre 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 didnt 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. Aspergers kids often study subjects
obsessively, and all of them have quirks and unusual skills that make them stand
out. The youngest in Bens group of friends even discovered for himself that he
had Aspergers, by doing reports and research on the subject.
Im 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 Bens life?
I have friends now, he said.