Like many a 5-year-old, Tristan Timpone is going through a wizard phase.
But the boy is one of a growing number of Vermont children who practice a particularly esoteric strain of magic. Just ask his mother. Or his occupational therapist. Or his speech pathologist.
Two years ago, Tristan was diagnosed with autism. Although his condition is considered “high-functioning,” his parents have nonetheless been forced to reorganize their lives around it. Affected children typically require enormous amounts of treatment and therapy just to function, let alone get better. That can relegate both kids and parents to social purgatory.
So this winter, when the Starksboro-based Common Ground Center approached Tristan’s mother, Angela, about attending an autism-friendly family camp the weekend of June 15 — the first of its kind in Vermont — she was quick to sign up. But Common Ground organizers also wanted Timpone, a former event planner for then-Congressman Bernie Sanders, to help promote the camp. Timpone’s story evokes a common refrain: Parents of kids with autism have to advocate and fundraise for activities most people wouldn’t think twice about — including vacations.
Timpone, 32, used to teach figure skating 30 hours a week, but now she’s got too much going on at home. She and her husband, Peter, have two other young children, two dogs and one overbearing cat. Peter works full-time as chief information officer for a textile company in Tunbridge. Though she still manages to teach skating about 10 hours a week, Angela now spends most of her time with their kids. That is, when she’s not lobbying for autism legislation at the statehouse.
Statistics suggest Autism Spectrum Disorder — an umbrella term that encompasses five variations of autism — is growing exponentially. The Atlanta, Georgia-based Centers for Disease Control can’t confirm that ASD is the “fastest-growing developmental disability in the United States,” as was reported by The Burlington Free Press on June 20. But a recent study by the CDC determined that about one in 150, or approximately half a million, American children suffer from the disorder — roughly a tenfold increase over the last decade. Those numbers likely reflect doctors’ increasing familiarity with autism. But regardless, federal legislators predict that annual autism-related health-care costs will rise from the current $35 billion to an estimated $300 billion by 2015.
In Vermont, the rate of autism diagnosis has been increasing by about 20 percent per year since 1997, according to a state specialist. But advocates suggest state institutions lag behind the demand for services. An autism-friendly camp, therefore, isn’t just a nice idea, but a sign that autism awareness among Vermont parents could be reaching critical mass.
It’s Friday afternoon at the Timpones’ weathered, white-shingled house in Montpelier. The babysitter has cancelled, leaving Angela to manage solo. Camp, an hour’s drive from here, starts in, well, an hour.
“I’m just getting a few things together,” Timpone explains, welcoming a reporter into her cramped kitchen. Seven-month-old Liam looks out quizzically from the crook of her arm. His mom is dressed in a brown T-shirt and black dress. Despite her myriad responsibilities, she looks surprisingly relaxed and elegant. “I still have to vacuum, but we’ll do that before we go,” she announces, as if someone else were helping out.
The scene in the Timpone living room could be an episode of “Fawlty Towers,” except that no one speaks with an English accent and all the starring characters are under 5. A vacuum languishes on the floor next to a baby crib. Dogs bark upstairs. Three-year-old Dylan sits at the dining-room table in front of a large pan of dried beans, smiling mischievously. “Wizard Tristan,” as he prefers to be called, has removed all the couch cushions and piled them around the room. Now he’s dancing around the living room in front of a computer playing Monsters Inc. To top things off, the cat, perched between Dylan and the beans, is whining like a fire truck.
Timpone puts the baby in his crib and resumes her task of unpacking groceries from a cloth bag, also on the table. The activity is a routine one, but today it appears practically Sisyphean: Every few seconds, a new mini-drama erupts, and every time Timpone returns to the bag it appears full again.
“Oh, you want to play with the beans?” she asks Dylan. “But you have to play with them in the pan. Otherwise, the dogs will eat them and their poopies will be really big.”
“Uh-oh,” says Dylan, spilling the beans.
Then Liam does a headstand in his crib, and Timpone rushes over to rescue him.
“Why are you doing that?” she asks the infant.
Meanwhile, the cat is trying to get some attention. “MEEEEOOOWW,” it cries.
“Max, you know what?” Timpone says, pushing it aside. “Scoot!”
From an outsider’s perspective, Tristan, who has short-cropped hair, light blue eyes and rosy cheeks, is easily the best-behaved member of this cast. While Timpone tries to keep her other kids safe, the boy continues his inspired waltz, only crossing the dining room’s threshold to offer the occasional pithy remark. Otherwise, he acts as if he were home alone.
“I hate vegetables,” he says distractedly while Timpone unpacks a box of “EnviroKidz” cereal. “They’re not yummy. I like hot dogs, Momma.”
“Yeah, you do,” Momma agrees. “But we can’t bring those with us. We can bring tofu dogs, but you don’t like those anymore.”
Tristan’s aloofness is no mere personality tic, but a classic manifestation of autism. “If the movie wasn’t here,” Timpone admits, “you’d see that it wasn’t a real back-and-forth communication.”
As if to illustrate her point, Tristan returns with a blanket.
“What would you like the blanket for?” she inquires, looking directly at him.
The boy shifts on the balls of his feet, mutters something, and then migrates back to his movie.
“See?” she concludes.
Timpone explains that, until he switched medications a few months ago, her son had been plagued by a cruel assortment of physical ailments. Tristan went days at a time without sleeping. At school, teachers reported, he would walk around in circles all day. He once went 28 days without moving his bowels.
Timpone exhales heavily. “God, it’s just unbelievable,” she confesses amid the clamor. “It’s like a black cloud. And even if it lifts . . . you can’t get above it.”
Perhaps more frightening than Tristan’s medical history is his inability to communicate pain. Timpone says the only indicator of her son’s constant discomfort has been his artwork. To demonstrate, she points to a few boisterous crayon drawings of stick-figure men hanging next to a Sabra Field print. Tristan began drawing people only a few months ago, while on the new meds.
For contrast, Timpone moves into the living room and removes another drawing from a towering stack of papers. In this earlier work, Tristan’s crayon lines are smaller — indeed, stunted. Three simple drawings depict “T” — for his name — a door and a roof. It’s as if the boy had attempted to communicate his sense of imprisonment.
Timpone closes the laptop and collapses onto the displaced couch cushions with Dylan, Tristan and baby Liam. The boys plead for another movie. “No,” she declares firmly, in answer to their protests. “We’re going on our trip.”
The Common Ground Center’s family autism camp complements a recent groundswell of legislative action on both federal and state fronts. Last December, the landmark Combating Autism Act appropriated nearly $1 billion for the expansion of federal autism-related research, treatment and intervention. A follow-up bill, which was introduced in March by Senator Hillary Clinton (D-NY) and sponsored by Vermont Senator Bernie Sanders (I-VT), is moving through committee. In May, the Vermont legislature approved S.121, a comprehensive autism bill that provides for an “interagency initiative” to “enhance services” for individuals with ASD.
Given the scope of the epidemic, however, those efforts might not be sufficient. In spite of President George Bush’s stated commitment to autism, the CDC spent only $15 million last year on autism monitoring and education — about the same amount earmarked for anthrax-related initiatives. And in Vermont, while S.121 represents groundbreaking autism legislation, it doesn’t earmark any funds for services.
Vermont’s Department of Education is the biggest single provider of autism support in the state. As of last December, there were 582 kids with ASD in its special-education program, compared with just 13 in 1992 — a figure that doesn’t include children under 5 or over 22. In 2006, each special-ed student cost Vermont taxpayers approximately $16,000.
That figure is misleading, however: There are egregious disparities in services offered through special education, according to both advocates and a state official. While every school district is served by a community mental health agency, only three sub-agencies specialize in autism. That means affected kids outside Chittenden, Washington and Addison counties have a tougher time obtaining care.
Home services are a different story. Timpone, whose child is high-functioning, pays $6000 per year for home consulting. If she includes all associated costs, her out-of-pocket expenses range between $15,000 and $20,000.
Had Tristan been diagnosed before 2001, a Medicaid waiver program would probably have picked up most of those expenses. But that year, state legislators discontinued comprehensive services for most parents with newly diagnosed children.
Some services are still available. Medicaid will, for example, subsidize “personal care attendants” for parents of kids with autism. Two state autism specialists — coincidentally both named Claire — help parents access assistance. The state also offers services such as psychiatric care and employment assistance to individuals 22 and older who suffer from the disorder.
But that’s not enough, according to Lynn George, president and founder of Autism Support Daily, the state’s most prominent autism advocacy group. Personal care attendants, while helpful, are underutilized, she says; her organization has calculated that, on average, parents use only 64 percent of their allotted hours. She and Timpone suggest that’s because attendants — who make $10 per hour, without benefits — are often either underqualified or prone to transience.
George doesn’t want to discourage caregivers from helping children with autism, but says she’s concerned about institutional spottiness. For instance, she’s astonished that caregivers aren’t subjected to federal background checks. “Parents need help,” she insists, “but they cannot find people to care for their kids. And their kids may be very hard to deal with.”
What could explain this apparent lack of commitment on the part of state government? The problem may reside in a general unfamiliarity with autism itself. Relative to other disorders, ASD is the new kid on the block — even though symptoms of it were catalogued as early as the 18th century, the term “autism” wasn’t officially coined until 1943. The American Psychiatric Association didn’t differentiate it from schizophrenia until 1980.
Besides, since symptoms of ASD are as diverse as they are understudied, recognizing it can be a confusing endeavor. An individual with higher-functioning Aspergers’ syndrome, for example, may not appear to have anything in common with another who is nonverbal. Both individuals’ conditions, however, could be classified on the autism “spectrum.”
In spite of these obstacles, Vermont parents are mobilizing. Autism Support Daily was instrumental in the recent passage of S.121, the state autism bill. According to Claire McFadden, an autism specialist with the Division of Disability and Aging Services, George’s group is one of about 10 similar organizations in Vermont, all of them created within the last three or four years.
But even McFadden, a state employee who supported the recent legislation, confirms George’s claim that current services are inadequate and uncoordinated. “Families are very frustrated,” she notes, likening the legislative process to a “meat grinder.” She adds, “It’s been five years now [since the cut in Medicaid funding], and I have no idea if we’ll ever see money again to open up that service for kids. For five years, it hasn’t happened.”
Vocal parents such as George and Timpone offer a more pointed critique. “It’s a plan to make a plan,” Timpone, who serves on Bernie Sanders’ Disabilities Advisory Council, notes wryly of the bill. She characterizes the process of applying for autism services as a “mystery,” suggesting, “It doesn’t seem like there’s a lot of support from the agencies.”
Even if the state beefs up autism services, parents of kids with ASD will still be in for an uphill battle. Since autism requires such enormous investments of time and money just to keep kids from regressing, it can be hard for parents to strategize, much less find a common set of concerns around which to rally.
After all, even though it’s not clear what causes the disorder, each parent and doctor subscribes to a favorite theory. A popular one holds that the disorder is linked to gastrointestinal issues. Another points to genetics. And, according to a recent article in The New York Times, controversy is raging anew over a book that suggests the disorder stems from mercury content in children’s vaccinations.
These squabbles aside, some parents don’t have the time or interest to get involved. “If you’re working and have other kids,” Timpone says, “do you really want to be reading a book on autism?”
For this mother, the autism camp — assuming Tristan doesn’t have a major meltdown — will be a respite from an exhausting daily routine. But Timpone also views it as an opportunity to reach out to other struggling parents. “Bottom line, families are stressed,” she insists. “If they don’t have time to reconnect with each other . . . Who can survive that?”
Even Timpone, a seasoned activist with a supportive spouse, has her moments. She says her estrangement from friends felt most acute about this time last year, when Tristan hid under a table at a crowded party. She burst into tears out of frustration. “Those moments are really tough,” Timpone divulges. “But I refuse to have people not accept us, or accept him. We’re not hiding anymore. We’re gonna do the same old stuff no matter how hard it is.”
In spite of her assertion, however, Timpone admits she’s concerned that the camp might be too much of a shock for Tristan. Kids with autism are usually comforted by repetitive behaviors, so something as innocuous-sounding as a “weekend jaunt” can throw them into a tailspin. Indeed, though storms are predicted, Timpone’s main concern isn’t weather-related. Instead, she’s worried Tristan won’t be able to function without his prized videos. “It’s going to be an interesting withdrawal,” she states ominously.
At 2:30 on Sunday afternoon, the sky over the 700-acre Common Ground Center can’t make up its mind. A bank of storm clouds obscures the peak of a nearby ridge, but sunlight still pools in the meadows. It’s either an excuse to veg inside, or a reason to get outdoors before a thunderstorm hits.
The Timpones choose the former. Seated at the end of a long, empty table by a carton of EnviroKidz cereal, Angela and Peter look exhausted. In another corner, Tristan and Dylan sit quietly with six other children in front of a massive television screen — sure enough, camp organizers have bowed to parental requests for a movie. “Make sure you stop it before it starts cycling,” Timpone warns her husband.
The weather’s indecision seems appropriate: At first glance, it’s impossible to tell whether this three-night camp has been a success. That families from all over the Northeast made the schlep in the first place could be considered a triumph. But at worst, the scene here underscores each family’s sense of isolation.
That assessment applies to the rest of camp, too. To the uninitiated, a tour around the Common Ground Center property suggests that activities are disjointed and unstructured. For instance, later on in the “Kid Barn,” Tristan mounts a tricycle in the “motor skills” area and rides it as if he were a loose electron. In an adjoining “Wonderful Wizard Workshop,” children fly around spewing contrails of paint and glitter.
To this particular crew of campers though, the scene represents a domestic fantasy — an environment where children with ASD can let their hair down without being stigmatized. Such controlled chaos is only possible because every parent and volunteer has agreed to watch out for all children, not just the ones they came with. That’s crucial, since some kids with autism are prone to “bolting,” or running away. “We were all strangers with one common thread,” explains a euphoric mother from Pennsylvania. “But autism is no longer that thread. Now we’re talking about, ‘Oh, look at that bug.’”
“Everyone’s kind of watching out for safety,” says Common Ground Center co-founder and co-director Jim Mendell, adding that the participants at this weekend retreat could be better behaved than his usual clientele — i.e., families with kids who aren’t disabled. Tristan is no exception: He’s been churning out art projects like a Renaissance master. Earlier, he created two new wizard wands and a collection of colorful drawings — most of them populated by bubbled-handed stick figures. Oh, and he made a card for his new girlfriend, a smiling 7-year-old from Morrisville.
As if to test their newfound independence, mom and dad decide to leave Tristan and Dylan in the Kid Barn while they walk up to the family campsite. “It feels safe here,” Timpone observes. “I’m comfortable to let Tristan go with someone else [because] they’re not just going to let him wander off.”
Strolling up a dirt path with Mendell, the Timpones look like die-hard fans on the last day of a bluegrass festival. A tag sticks out from Angela’s shirt, and her sneakers have seen better days. Peter — who for the first time in eight years has lasted nearly a full weekend without turning on his laptop — has undone the top buttons of his Hawaiian shirt. Their unpolished appearance speaks more to a sense of adventure than surrender, however. Peter admits he’d felt “a little reluctant” about this weekend. But after the first night, he realized what a “great community” he’d fallen into. “It can be isolating to have an autistic child,” he acknowledges. “But here, everyone’s sharing the same boat, and it’s comforting.”
That goes for other parents, too, who pow-wow every morning in workshops and discussions. In fact, the camp was designed in part to precede an annual autism conference this week at the Doubletree Hotel in South Burlington that is sponsored by the Autism Society of Vermont, the state Department of Education and the University of Vermont. Just yesterday morning, Angela explains, she and Peter heard a talk by Patty Prelock, a UVM Communication Sciences prof cum “autism diva.” Prelock, who also chairs the statewide Vermont Autism Task Force, was lecturing on “floor time” — a play-based model of experiential learning. And since Friday, the Timpones have networked with two families from southern Vermont.
Is every ASD family in the state represented? Not exactly. While almost all the approximately 20 families in attendance have received full or partial scholarships on the $400 per-person fee, others couldn’t attend. Accordingly, Timpone stresses that she wants to make this camp more accessible. She’s already planning to help Mendell fundraise for version 2.0.
The camp administrator glows with appreciation. Mendell, bearded and effusive, has been co-directing the camp for 14 years, and he knows a thing or two about grassroots advocacy work. “We need to fundraise,” he confirms. Parents of children with autism, he adds, “can’t afford much of anything.”
When the trio returns to the Kid Barn, the atmosphere has changed. That’s because sunlight has begun to shine at full strength again, and many of the kids are abandoning their arts and crafts for the lure of the outdoors. Tristan, however, sits alone in a back alcove, hard at work on some drawing or magical accoutrement. He doesn’t look upset, or even tired. Rather, his features have glazed over, as if he were hoarding a secret.
“Tristan, do you want to come to the creek with us?” his mother asks.
“I need a girl,” he declares flatly.
“MollyRose is a girl,” she offers, motioning to Mendell’s 16-year-old daughter. “I’m a girl.”
In spite of this offer, Tristan shakes his head and mutters, “No creek!”
Timpone looks at her husband, fatigue flickering over her face. Tristan’s mood swing is a characteristic behavior. It’s also proof that autism, while it can be transplanted to summer camp, doesn’t disappear when clouds go away. “Do you wanna push this?” she whispers.
The couple decides not to. Left alone with some camp volunteers, Tristan doesn’t appear to notice as his parents walk out the door.
The Timpones, with Liam and Dylan, step out into the brilliant sunshine with Jim and MollyRose Mendell. The group strolls across a parking lot, then descends a steep slope to the riverbed. Here in the valley, sunlight sparkles on ferns in tiny, delicate patterns, and the rush of air off the water seems to lower the temperature a few degrees. Dylan, clad in only a pair of undies, skips along out front.
“Maybe Tristan doesn’t have to be interested just like us all the time,” Angela reflects softly. “But he has some social skills that are appropriate. Sometimes it’s OK for him to just be by himself.”