Eight-year-old Wilson Pearson (left) bonds with mother Laurie, father Brad and brother Xander at home. Jay Paul photos.
Wilson Pearson, tie clipped to his T-shirt, gets a serious look on his round face and declares, "Sometimes I'm the Dark Knight. Sometimes I'm Bruce Wayne; playboy by day, crime fighter by night."
The tie means he's Wayne, the billionaire alter-ego of Batman, 8-year-old Wilson's favorite superhero.
When Wilson spells third-grade-level words perfectly or talks about swimming lessons, it's easy to forget that he has Asperger syndrome, a milder point on the autism spectrum. Even his father, Chesterfield County teacher Brad Pearson, sometimes forgets. But life hasn't always been this stable for the Pearson family.
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People diagnosed with an autism spectrum disorder often have trouble relating to others and recognizing social and emotional boundaries, and many show repetitive behavioral patterns and are delayed speakers. Some never communicate vocally.
A few coughs and snorts punctuate Wilson's conversation when he gets anxious, and he will kick out a leg repetitively, but he is engaged in the world and freely hugs his 3-year-old brother, Xander, who is not autistic. Wilson, a husky blond, is a whiz at spelling and reading comprehension; he's also strong in math. "He's so high-functioning," Brad says.
Xander, a miniature version of his older brother, today wearing a Robin cape and rain boots, is "a really nice kid," Wilson says. "I've decided he can go in my room anytime." The two have bonded over a common love of caped heroes and Mario Brothers video games.
But Wilson's unorthodox nighttime habits complicate family life. He often wakes between 2 and 5 a.m., and either his mom or dad must supervise him, so they typically sleep apart — one in Wilson's room, the other in the master bedroom.
And the brothers' close relationship is relatively new, dating back to October, says their mother, Laurie Pearson, a Spanish teacher for online education company K12. Before, Wilson would strike out at Xander, trying to hurt him. At school, kindergarten was fairly peaceful for Wilson, but the greater demands of first grade presented immediate difficulty. The Pearsons were called almost daily to the principal's office; Wilson once threw a walkie-talkie at an administrator and ran out into the street in a desperate bid to go home.
"I couldn't do anything fun," Wilson says about his previous school, a public elementary in Chesterfield, "so I got really mad." It became clear to the Pearsons, teachers and administrators that Wilson wouldn't succeed in this environment, so in February 2009, he was sent to the Faison School for Autism, with the Chesterfield school system paying the annual tuition of $59,000.
Rising School Population
Wilson is one of 87 students at Faison, an 11-year-old Richmond institution that works with children and young adults up to age 22 diagnosed with autism or showing autistic symptoms. It was started by Markel Chairman Alan Kirshner and his ex-wife, Flo Guzman; their granddaughter was diagnosed with autism.
Faison, located on Byrd Avenue west of Willow Lawn Drive, uses techniques from Applied Behavior Analysis (ABA), the only proven course of treatment for autism, according to Kathy Matthews, Faison's director of education. Invented in the 1930s, ABA uses positive reinforcement to help autistic children learn social, academic and life skills, as well as break bad habits such as aggression toward others.
Faison's goal for many of its students is to keep them there only temporarily — figuring out accommodations that will help them succeed in their home school. And many of the students do just that, which helps the school move along its eight-week waiting list (in April, only two names were on it). All but a handful of Faison's students come from public systems that are required by law to pay for their education, bills that reach into the millions for some systems, as more children are diagnosed with autism and other disorders that require treatment outside traditional schools.
The number of autistic students in Virginia's public schools has more than quadrupled in the last decade, in part because doctors have gotten better at diagnosing autism and also because the state's special-education classifications have changed. Autistic students, showing different levels of ability and impairment, were previously classified under different labels; now they're grouped under the larger autism umbrella.
A yearly census taken in Virginia's public schools counted 2,226 autistic students between the ages of 2 and 22 in 2000; that number rose to 9,136 in 2008, according to John Eisenberg, director of the state Department of Education's office of instructional support and related services. And the 2009 estimate is 10,092, nearly a 10 percent increase from the previous year.
Chesterfield County recorded 352 autistic students in January 2008, 396 in January 2009 and 474 on Dec. 1, 2009 — a leap of 78 students in the last calendar year. The school system's 2009-10 operating budget allocates $52 million for its special-education services, in addition to a $10.4 million federal grant, a 5-to-1 local-to-federal funding ratio.
The majority of the state's autistic students stay in their home schools with assistance from special-education programs, Eisenberg says, but some students attend institutions such as Faison. Chesterfield has 34 students diagnosed with autism as a primary or secondary disability who attend a private institution; 13 go to Faison.
These decisions are made by a group of parents, teachers and others involved in a student's education known as an IEP team, standing for Individual Education Plan. Generally, the team members are on the same page, Eisenberg says, but parents have options if they think their child should attend a private school even though the home school system disagrees.
Occasionally, the courts get involved, as in a 2006 Henrico County case that compelled the county school system to reimburse a couple for their son's tuition at Faison. Eisenberg says that it would be illegal for a school system to make a decision on a child's IEP based on finances, but he does acknowledge that the rise in autism diagnoses — and expensive treatments — is "strapping a lot of school divisions."
Laurie Pearson says that Wilson's passage to Faison was fairly smooth, although his Chesterfield County IEP designation was officially "emotionally disturbed" for some time, despite the fact that a doctor has never made such a diagnosis. After more time and more paperwork, Wilson now has a second label: "autistic."
Warning Signs The diagnosis, which has dominated the family's life, wasn't obvious to his parents at first. When he was a toddler, Wilson would lie down on his stomach and roll toy cars in front of his eyes over and over again, his mother says, and she and Brad just thought it was part of his personality. But day-care workers observed the same repetitive action — combined with a lack of speech — and believed "something was not quite right," Laurie says.
Chesterfield mental-health staffers who observed 2-year-old Wilson at the Pearsons' home determined that he had a developmental disorder.
"That's when the big race starts," Laurie says. Wilson's primary pediatrician disagreed that anything was seriously wrong with the boy, saying, "He's just strong-willed," Laurie recalls. Wilson then went to a series of specialists, including neuropediatricians, and was diagnosed by two doctors as autistic when he was 4 and 5.
He also struggled with diarrhea and constipation, conditions that left him scrawny and with dark circles under his eyes, a far cry from the current Wilson, who bears a resemblance to Dennis the Menace.
Vitamins improved his digestion problems, and cod-liver oil, prescribed by one doctor, seemed to help remove Wilson from his "bubble" and begin speaking at age 4, his parents say. Before, "he had his own language," Laurie says — sounds and other gibberish. He was quiet most of the time, except when tantrums would erupt out of the blue, causing Wilson to bang his head on the floor sometimes. Cod-liver oil, which has vitamins A and D, has been found to help unblock neural pathways in some autistic people.
The Pearsons began exploring prescription medicine for Wilson when he was 5, seeking to "take the edge off" of his tantrums, Laurie says. Doctors prescribed ADHD medications at first, a disaster, she says. The low point — which occurred when Wilson had started school — came when he started taking Wellbutrin, an antidepressant. Wilson's symptoms became worse, and he developed bizarre behaviors, including a fixation on fire and freezing objects. He placed Lego pieces on light bulbs and urinated in a microwave.
"It was unmanageable," Laurie says. "Years zero through seven were completely unstable."
But he's since gone on Prozac, which has helped calm him, and neurofeedback, a treatment in which electrodes are placed on a patient's scalp and earlobes to measure brainwave activity. The patient does not feel a shock or other sensation, according to Wilson's clinical psychologist, Dr. Glenn Weiner at Dominion Behavioral Health Care.
Wilson receives less than 15 minutes of Low Energy Neurofeedback System, or LENS, at each weekly session. LENS is "designed to gently help the brain become more flexible and self-regulating," according to an article by D. Corydon Hammond, a psychologist at the University of Utah School of Medicine.
He's shown "significantly better mood control, much less irritability; [he's] much less impulsive, more flexible and compliant," Weiner says. Also, his dosage of Prozac has been reduced. But Weiner, who has practiced neurofeedback for 11 years, says that he hasn't seen enough autistic patients to tell if this treatment will be broadly successful; traditional neurofeedback was introduced in the 1970s, and studies show it works for many ADHD and epileptic people, but the first published paper about the treatment on autism came out in 2002.
Staying on Schedule In Wilson's classroom, seven teachers and seven students — six boys and one girl, grouped by their advanced ability to communicate — sit at desks built for two people. Each table has a digital stopwatch, helping the class run on a strict schedule, which school administrators view as a key element for students' success.
Wilson's class incorporates several academic disciplines each day — although he and his fellow students get to select the order. He picks spelling first, a natural choice. Outside class, Wilson complains that he hasn't learned how to spell "supercalifragilisticexpialidocious," the word from the movie Mary Poppins, but he has a good handle on plenty of other words.
Later, he'll read aloud from his science textbook and answer questions about plants, writing on a plastic-encased handout with a dry-erase pen. All the while, one of his teachers, Rachel Lewis, takes constant notes on a clipboard. Wilson receives pluses when he gets a question right (nearly always), or a minus for a missed answer.
Wilson and the other kids receive points for finishing their lessons, earning them free time and activities of their choice. On a spring morning, Wilson sprawls across a rug in the class' play area, playing dinosaurs with Aubri, a girl with springy brown curls and a blue hoodie. It looks like Wilson's herbivores are about to defeat Aubri's T-Rex, but then her sabertooth tiger jumps in at the last minute and kills one of Wilson's dinosaurs.
"Wah-wah-waaaah," Wilson sings, imitating the sad, muted trumpet from old cartoons. He's a good sport, and doesn't begrudge Aubri her victory.
In the halls and the lunchroom, a broader spectrum of Faison students is present: Teachers guide children wearing helmets for their own protection, while T-shirted teenage boys spend a bit of free time playing video games. One small boy sits groaning at a lunch table in the corner, supervised by a teacher, when he begins throwing pieces of his sandwich. Wilson's table hardly bats an eye — the school does not encourage attention when a child exhibits tics or misbehaves. But a teacher quietly exchanges chairs with a student, blocking the space between Wilson's table and the boy. A moment later, he hurls a sneaker, which lands close to the table.
Cause Unknown
According to the 2007 National Survey of Children's Health, released in 2009, the United States has an estimated 673,000 children ages 3 to 17 with an autism spectrum disorder. Boys are about four times more likely to be autistic than girls, and white, non-Hispanic children are much more likely than their black and multiracial counterparts to have the disorder. Between 1 million and 1.5 million children and adults in the United States are estimated to be on the spectrum.
The cause of autism is not known, but most researchers agree that genes are a risk factor: If one identical twin is autistic, the other has a 60 percent to 96 percent chance of also being affected, according to the Centers for Disease Control and Prevention.
Faison's Matthews notes that among her students, other problems often accompany the disorder — from intestinal complaints like Wilson's, to Tourette's syndrome, a neuropsychotic disorder characterized by physical and vocal tics, notably shouting out curse words.
Vaccines have garnered a great deal of attention in recent years as a possible link to autism, leading some parents to decide not to vaccinate their children against childhood diseases. A mercury-containing preservative, thimerosal, has been tested in several studies to see if there is a link between it and autism — a link that has not been proven, according to the CDC. A federal court backed up the agency's assertion in March, ruling in three test cases that thimerosal does not cause autism.
However, groups like the Coalition for Vaccine Safety and SafeMinds continue to argue that there is a connection between autism and the preservative, which was present in flu shots. Thimerosal has been removed from many vaccines in the United States.
Douglas Greer, a Columbia University professor who developed the teaching method used at Faison, says that autistic children should be studied individually. "Inoculations may be a variable" in some cases of autism, he says, but adds that this result wouldn't necessarily show up in the large studies already conducted.
Matthews agrees with the government's view that shots do not cause autism, and that changing dietary habits — such as avoiding glutens or sugar — does not cure the disorder (researchers say there is no cure), although she does agree that such diets can help some autistic people because of accompanying conditions. "Some information parents are getting is really bad," Matthews says. "Parents are so desperate; they'll do anything for their kids."
Overcoming Challenges
A panel at a recent autism conference hosted by Richmond-based Commonwealth Autism Services featured five teens and adults diagnosed with autism spectrum disorder, all of whom have managed to be successful in school or work.
Tamara Eastman, 49, could be considered a success story even without the hurdle of autism. She has traveled extensively and enjoys a fulfilling professional life.
And yet when she was diagnosed with Asperger syndrome at age 30 — after an observant professor at her community college suggested that she be tested for autism — Eastman says that her father thought "she would never amount to anything."
Eastman remembers being "isolated and punished" during her childhood, blamed by her teachers and parents for her outbursts, which were often triggered by boredom. But her adulthood has been far more satisfying.
An expert in the field of female pirates, she has conducted research all over the world and assisted with a documentary on pirates filmed in Jamaica. Eastman has to make accommodations for her condition — avoiding loud, sudden noises when she can and begging off from happy hours at bars.
At Fort Lee, where she is a military historian, her boss gives her gentle signals "when to stop talking and get to work," Eastman jokes. She was hired under the Schedule A hiring authority, a program started to employ disabled individuals as 2 percent of the federal workforce.
"This is real work we're doing, not just stuffing envelopes," she says forcefully.
The prejudices of Eastman's childhood and young adulthood are less present today as the public becomes more aware of the autism spectrum — the growing number of diagnoses means we're more likely to know an autistic person. But challenges still exist, as the Pearsons and other affected families are reminded daily.
Laurie is cautiously optimistic about Wilson's future — he's a bright student, and Faison, with its consistency and positive reinforcement, has helped him feel settled for the first time in his life. And he's got two parents well-versed in the intricacies of the American education system.
Wilson may not remain at Faison forever, but Laurie says she hopes her son can find a home in a nontraditional program without the pressures of a regular public-school schedule that Wilson finds so overwhelming. "We'll navigate our own way," she says. "If Brad and I had our own way, we'd love to start our own little private school for kids that don't fit in."
NOTE: This story has been corrected since publication.
