Autism is found in every region of the world and in families of all socio-economic backgrounds. It severely limits a child’s ability to communicate and socialize. It’s three to four times more common in boys than girls, although autistic girls typically have more severe symptoms.
The number of individuals with some form of autism has ballooned in the last 15 years, from one in 10,000 to one in as few as 150. Theories for the surge abound — from mercury levels in vaccines to a stage in pregnancy when the brain of a developing fetus systematically goes awry. But most experts say it’s a combination of circumstances, most notably increased diagnoses and a proliferation of attention to the disorder. They also say it’s plainly an increase in incidence, for which there’s no good explanation.
In the metro Richmond area, there are 438 children identified with autism in special education programs or classes. What’s more, the Virginia Department of Education estimates that at least 896 children ages 2 to 4, and post high-school through age 21, receive special-ed services from public schools in the metro area. Many of them likely have autism.
Public awareness of autism is mounting. It’s three times more prevalent than juvenile diabetes, five times more than Down syndrome. The National Institutes of Health estimates that the cost of services to those affected exceeds $3 billion each year.
Two weeks ago, federal officials held a national conference on autism. A 10-year plan was announced to fund research for its causes, create better services and train therapists. California, Florida and New Jersey are leading the way in terms of educational models and legislation. But how does Virginia serve its children with exceptional but distant minds?
Jack Foster was supposed to be a mid-July baby. But he was born six weeks early, on June 2, 2000. For the first 10 months, Jack appeared to develop normally. He sat up. He crawled. He walked.
“Then it just went away,” Richard Foster says. When Jack was 6 or 7 months old, he didn’t like to be cuddled. It worried Foster and Jack’s mother, Lisa, because their older son Daniel was attentive and affectionate.
Jack was diagnosed with autism just after he turned 2. He’s a brown-haired boy with wide dark eyes that belie a complexity no one seems to grasp. Once, out of the blue, Jack said “butterfly.” Once, “banana.” The words shot through the air like meteors, then disappeared, never uttered again.
“When people hear autism,” Foster says, “they either think of somebody like Rain Man who’ll recite pi to the nth degree or else rock himself in a corner. Jack is like neither.”
Foster is managing editor for Richmond Magazine and a former colleague at Style Weekly. Now he finds himself the subject of a story: that of a father desperately seeking the best for his son, and fearing he won’t get it in time.
Foster has spent countless hours researching the disorder, and he’s found one treatment that’s controversial but that seems to work. It’s a form of early intervention called Applied Behavioral Analysis, known by the acronym ABA. Some researchers argue it’s the most effective approach to autism for kids like Jack.
What Foster didn’t realize was that he’d have to fight the state to get the treatment.
In the year and a half since Jack was diagnosed, Foster says he’s struggled to get services for his son. The long and arduous process of placing him in a public school took so long that Jack missed the fall 2002 school term, Foster says. By spring, he was in a special-education class, where Foster insists Jack was “lucky to get 20 minutes of one-on-one help.”
Foster lives in Chesterfield County, where the public schools don’t offer ABA. It isn’t routinely provided in any Virginia public schools. While most area school districts have one or a few classrooms for children with autism, state educators say there’s no mandated curriculum. And there are no autism certification requirements for teachers; instead, instruction criteria fall under the special-education umbrella.
“There is this problem out there, and basically the school systems are leaving it to the parents to solve,” Foster says. “You want ABA for your child. As a parent, you think this is the best chance he has. Good luck getting it.”
Chesterfield County has repeatedly turned down Foster’s request to fund ABA for Jack. Insurance won’t pay for it, either. So he started probing programs that exist for children with autism in public schools elsewhere. He considered moving to New York, Delaware, New Jersey or Maryland.
Desperate, Foster says he called Lt. Gov. Tim Kaine in September. “I told him I feel like the state is not providing an adequate service, ‘What do I do?’”
Kaine chairs the Commission for Virginians with Disabilities, a panel that makes funding recommendations to the General Assembly. He asked Foster to speak to the commission. Later that month, Foster, in his first lobbying role, presented his case for ABA, pleading for state funds to assist more than the few who’ve been helped in area schools and programs.
“The scientific and medical literature is clear and consistent that individuals with autism can make very good progress with early intervention,” says Donald Oswald, a developmental psychologist with the Virginia Commonwealth University Health System who has diagnosed countless individuals with autism. “The system [in Virginia] has not been very good about responding.” He does point to what he calls “pockets of improvement” — Chesterfield and Henrico county public schools and the city of Richmond have at least one class each devoted to children with autism.
The Individuals with Disabilities Education Act of 1990 assures a free and appropriate public education to children with diagnosed learning deficits, such as autism. The 1991 version of the law extends services to preschoolers who are developmentally delayed, primarily because experts view early intervention as pivotal. As a result, public schools must provide services to children with disabilities, including those ages 3 to 5. Many states, including Virginia, also offer services to children from birth to age 3. But they’re not required to provide specific treatments like ABA.
The premise of ABA is that children with autism are more likely to repeat or continue a behavior if rewarded for it. After many — hundreds, sometimes thousands — repetitive instructions to do simple tasks, followed by rewards or reinforcements, the child eventually begins to respond without being prompted and will, for instance, sit for longer periods of time. Theoretically, sitting still and following directions segues into mastering more complex behaviors.
ABA is expensive and it is intense – it calls for as much as 40 hours a week of one-on-one work with a trained therapist, year-round. Kids with autism between the ages of 2 and 6 stand to gain the most if they receive ABA for two years or more.
Foster put Jack on a waiting list at the Faison School for Autism, that uses ABA and costs $55,000 a year (see sidebar). In August 2003, three of the five children who completed Faison advanced to regular classrooms. But even if Foster could get Jack into Faison, he couldn’t afford it, he says. And a private therapist costs approximately between $26,000 and $40,000 a year.
Halie Sadler spends her weekday mornings in a typical preschool and her afternoons at Faison. “When we brought her here we felt we had this window,” Sadler says of her daughter’s potential. “She didn’t call me Mama. She didn’t call my husband Daddy.
“I never thought my child would know all the letters of the alphabet and count to 28. Now she’s at the point of writing her name,” Sadler says, jubilant. “There’s no cure yet, but it’s unreal what type of chance these kids have getting in ABA.”
“There is no doubt there is veracity to ABA as a methodology that works, that over time is cost-effective,” says John Toscano, executive director for The Autism Program of Virginia. TAP-VA is a statewide autism advocacy consortium that provides services, resources and referrals to at least 25 Virginia communities. It receives about $500,000 a year from the General Assembly.
The problem hits home for Toscano, who’s spent 20 years helping families in the United States and overseas to understand and deal with autism. Three years ago his grandson was diagnosed with autism. The child is 5 now and lives in North Carolina, where Toscano says he’s receiving the services he needs.
“It’s prophetic,” Toscano says. “You hear about incidence rate increasing and it’s in your family. It’s one of my motivations for looking at the bigger picture.”
Toscano stops short of endorsing ABA to the exclusion of other approaches, saying that autism requires a continuum of care and resources for people for their whole lives. “We don’t have to battle the awareness issue,” Toscano says. School systems are stressed, demands are high and the desire’s there,” he says. “The obstacles are fiscal.”
With 662 school-age kids identified with autism in its programs, the Fairfax County schools have been at the center of the instructional debate. Last month, Foster’s ex-wife Lisa moved to Fairfax County, in hopes of getting Jack into an individualized ABA program. Foster now has Jack and Daniel only on weekends, but he wholeheartedly supported the move.
Lisa Foster doesn’t share her ex-husband’s insistence that ABA is critical to Jack’s development. “I think ABA is useful, but I don’t see it as the end-all, be-all of therapies for autistic kids,” she says. “I think any treatment should be tailored to a child’s individual strengths and weaknesses, and their own learning style. For some kids, that’s ABA, but for others, it’s not.” She adds that she is skeptical of the efficacy of behavioral therapy on a neurobiological problem.
“I’ve been quite pleased with the teachers Jack has had, and the dedication and passion they show for helping him and kids like him,” she says. “I know sometimes the teachers are frustrated at the lack of support, or funds, to provide everything they want to, but I certainly don’t think the school programs are ineffective.
“I do wish the schools could be more flexible in what they provide to the individual students,” she says, “so that those who seem to respond well to ABA could have the opportunity to engage in an ABA-centered program.”
Earlier this fall, Richard Foster wrote to the Fairfax County School Board, advocating a proposal for an autism charter school. Since Jack has been in the Fairfax school system, Foster says he hasn’t received the appropriate attention. He’s getting some one-on-one therapy and is in a special-education class for children with autism. The class consists of Jack and one other boy who Foster describes as more severely autistic than his son is. Jack’s still on a waiting list at Faison. And Foster is in waiting for a breakthrough.
Four years ago the question of how children with autism should be taught intensified when Fairfax school officials halted a pilot ABA program. The county still uses this method to teach some autistic students, but supporters of a charter school say all children with the disorder need ABA. School officials recently disagreed.
The Fairfax County School Board voted Nov. 20 against a proposal to create a year-round charter school for as many as 60 autistic children. It would have been the first of its kind in the state. Opponents expressed concern that college students would be hired to provide the necessary instruction and, as hourly workers, wouldn’t provide consistency. They also worried that the $500,000 start-up cost would drain other school resources.
Despite voting down the plan, Fairfax school officials maintain they want to expand programs for kids with autism. Instead of a charter school, the board says it will discuss offering intensive, one-on-one instruction for elementary school children who have autism.
On a recent Saturday around lunchtime, Daniel and Jack Foster are buzzing about their dad’s Richmond town house in new slippers. Daniel happily shows off his Scooby-Doo feet. In minutes, Jack is pulling his Elmo slippers off. Books and a few toys are scattered about the family room. Daniel plays with a computerized dog. Jack walks to the sliding glass door and presses his hands against it. “You want to go outside, Jack-Jack?” Foster asks.
Without waiting for a response, Foster puts a coat on his son and they go out. Jack reaches for a sandbox that’s filled with water. Foster tells him no, it’s too cold, and pulls a riding toy from storage. It looks like a motorcycle with pedals and it has a handle that Foster holds to guide it from behind. With some help, Jack ambles into the seat. Daniel and Foster’s fiancée, Miriam, join the pair on the sidewalk. In minutes, Jack is pedaling. “He’s never done this before,” Foster remarks.
Last week, Foster found out that after a year and a half in limbo, he and his son may get the chance he’s dreamed about. Fairfax County has admitted Jack to its autism program. He starts Jan. 20.
Maybe someday Jack will talk. Until then, Foster is his son’s voice. S
