The Boy Who Wasn’t There
April 1, 2009
Set on a forested slope above Grandview Highway in East Vancouver, Sunnyhill Hospital has served for decades as a centre for the assessment of children with serious mental-health problems. Christian Aquilini was two years old when his parents, Paolo and Clara, first took him there for assessment in 1996. The Aquilinis’ first child, Alessia, healthy and robust from the start, had developed normally. Christian, on the other hand, didn’t speak and didn’t make eye contact. He seemed to live in a world of his own.
The pediatrician at Sunnyhill listened and looked and ordered a battery of psychological tests. He told the Aquilinis that their son might have autism. They were unfamiliar with the term, and with the strange neurological disease it describes. In its mildest form, autism causes children to have trouble with speech, social interaction, and empathy; they prefer to immerse themselves in odd repetitious behaviour or obsessions. In its severest form, autism produces children who never speak, never learn, never have a friend, never become capable of feeding themselves or being toilet trained. Lost amid their own synaptic pathways, they’re destined, in most cases, to be wards of the state.
Christian underwent test after test as months passed; the Aquilinis grew impatient as they awaited a diagnosis. They got angry when the hospital’s counselling psychologist finally said: “Accept it. He’s not going to be going anywhere. He’s always going to be like that.” She seemed to be sentencing their child to lifelong silence. Paolo, the son of an immigrant father of legendary determination, was not about to abandon his own son in the face of callous medical opinion. If the doctors at Sunnyhill won’t help Christian, Aquilini thought, I’ll find a way to do it myself.
He made contact with Families for Early Autism Treatment, a group of activist parents united by Sunnyhill’s dissembling and discouragement, and by provincial inaction on the illness that had silenced their young children. Within weeks, Aquilini found himself in California at UCLA’s Lovaas Institute. It’s run by a Norwegian-born clinical psychologist, Dr. Ivar Lovaas, who developed applied behaviour analysis (ABA), a treatment strategy that has shown good results in many autistic children. For the first time, Aquilini understood there was hope for Christian. But there were two important determinants in the success of ABA: the intensive, one-on-one program had to be started early; and the parents had to be able to afford the $65,000-a-year cost.
Back in Vancouver, Paolo and Clara interviewed some 80 people before hiring a head therapist and a team of six women who came to their Kerrisdale home daily, one after another, to perform the gruelling routine of behavioural modification that Lovaas expounds. Every movement, every hesitation, every sound, every alteration to Christian’s withdrawn nature was a challenge. When he screamed in protest, his mother cringed. “If not this,” Paolo asked, “where are we gonna go?” Together with his father and two brothers, Paolo Aquilini has extensive holdings in real estate, restaurants, golf courses, blueberry farms, and a couple of hundred hotels—money wasn’t the issue. There were simply no other options. Of Christian, he told Clara: “If he says ‘I love you’ one day, that will be enough.”
Beverley Sharpe was in a profoundly different situation. In the mid 1990s, her daughter would stand by the window in their West Vancouver bungalow, squinting into the sun. “C’mon, Allison. Lunch,” her mother would say. But the girl didn’t respond. She didn’t talk either, never had, not a word. Didn’t interact, didn’t play or cry or listen or do anything a two-year-old might do. Instead, she stood at the window nearly every day, sometimes wiggling her fingers at the periphery of her vision—stimming, it’s called—creating a mesmerizing flicker against the light. Her mother, watching, knew her daughter did not see her expression of concern or her own face in the glass. Maybe she’s a thinker, Sharpe, then in her mid 30s, told herself. Einstein didn’t talk until he was five. She silently told her daughter it was okay if she didn’t hit all the developmental milestones in the baby book, that she was beautiful and loved. Still, she wanted her daughter to turn. “Allison?” But Allison didn’t turn.
At Sunnyhill, Sharpe also entered a crucible of pediatric fumbling and psychiatric foot-dragging. At the end of it she too decided to embark on the expensive Lovaas ABA therapy. A meat inspector with the Canadian Food Inspection Agency, she knew that much would depend on the financial backing of her husband, an auto-body repairman. He, however, wasn’t convinced that he should collapse his RRSPs and spend tens of thousands a year on his young daughter’s treatment. She went ahead regardless, and in 1997, 10 days after she commenced the therapy, her husband of 13 years moved out. She converted her bungalow to rental suites, brought in tenants, moved herself into her own living room, and cashed out her savings and holiday pay. She did not have the resources of the Aquilinis, but she was just as determined she’d one day hear her child speak.
Together with three trained assistants, Sharpe began the mind-numbing ABA drills. In behaviour-modification therapy, every hoped-for action is broken down into a series of steps repeated in sequence hundreds of times until the child learns. Failure is greeted by a smile and a rigidly enforced new attempt. Success earns a slice of apple or a fragment of cookie. Months pass. Progress is excruciating. Sharpe mimes teaching Allison how to find a spoon in the kitchen drawer: “Allison? Where’s the spoon?” (Pushes Allison’s hand into the drawer.) “No, that’s the fork,” said with a smile. (Hand moved.) “Allison, where’s the spoon?” (Hand placed on spoon.) “Allison, where’s the spoon?” (Hand grasps spoon.) “Hey, good! There’s the spoon!” (An apple slice reward.) The drill goes on, again and again—this one took three weeks—until the response is invariably correct.
Like AIDS, autism was long misunderstood and minimized before it moved to the forefront of vexing medical issues. Despite the apparent increase in the number of children with autism spectrum disorders, scientists believe the illness has always been around but is now being recognized more frequently. It is Canada’s most common neurological disorder, with an estimated 50,000 children and 150,000 adults affected. It likely has its origins in genetics, although it may also be influenced, in part, by environmental factors, none of which have been categorically determined.
In the last decade, the extent of autism, the urgency of early detection, and the prospective cost of treatment have shaken public education and health systems across Canada. Autism, it’s clear, is a Pandora’s box of conflicting medical views, and potentially budget-breaking financial demands. It has become, in a word, political. In the past five years in B.C., as the number of special-education teachers declined by 15 percent, the number of students diagnosed with autism rose by 108 percent. As these numbers rise—there are over 550 new autism diagnoses each year in B.C.—existing services are stretched ever thinner. Meanwhile, as B.C. (and every other province) has moved to provide some direct financial aid to families and school districts dealing with autism, provincial governments have united in fighting against funding the one therapeutic method that’s known to be most effective: ABA. The reason? Money. For the 5,500 children in B.C. currently diagnosed with autism, the cost for a single year’s ABA therapy would be around $200 million.
Within the autism movement itself there are serious fractures over behaviour modification in general and Lovaas’s ABA system in particular. The problem, as critics point out, is that many children do not respond to ABA; it’s effective only 40 or 50 percent of the time. And to the degree it does succeed, a lot depends on early diagnosis and application of the 35-hour-per-week treatment. The program draws its inspiration from 19th-century Russian physiologist Ivan Pavlov, who taught his dogs to salivate on the cue of a rung bell, and from mid-20th-century U.S. psychologist B.F. Skinner, who gained fame for his work in behavioural conditioning via rigid reward/punishment routines.
ABA also runs against widely accepted late-20th-century trends in the psychological treatment of mental and emotional illnesses. It’s politically incorrect. Unlike modern Gestalt therapy, it doesn’t explore causes, emotions, or self-reflection, and it doesn’t utilize medication. Its methodology is based on regimented (some say cruel) repetition. But as Beverley Sharpe and the Aquilinis know, it often works. There are 32 other purported childhood autism treatments, and some have shown limited positive effects. But a 2005 New York state health report confirmed that the only frequently reliable autism therapy—so long as it is begun early—is ABA.
What happened to the Aquilinis and to Beverley Sharpe—the battles won and lost—has happened, with variations, to virtually all the parents of the children diagnosed with autism. Today, one in 150 children in B.C. (the ratio appears to be the same worldwide) is born with autism. Many end up at Sunnyhill and go through the same dispiriting process.
Dr. Vikram Dua, 46, now an associate clinical professor in UBC’s department of psychiatry, was drawn to Sunnyhill in 1999 by his earlier discovery that among older youths referred to him by the criminal justice system for forensic evaluation, at least 10 percent had autism. Yet none had been diagnosed. The health and education systems were shunting young autistic kids along, ignoring the visible evidence, and leaving it to the courts to deal with the consequences. It was, he felt, fundamentally wrong.
It didn’t take Dua long to learn that Sunnyhill was, itself, symptomatic of the 1990s failure to handle the growing epidemic of autism and to face the tragic results of delayed diagnoses. Studies from the period indicated that among parents whose children were later confirmed to have autism, these facts applied:
Many parents felt there was something wrong by 18 months. Many parents sought medical help for their child by age two. Only 10 percent were diagnosed with autism at that time. 60 percent were told their child was “developmentally delayed.” 30 percent were referred to a second (and third, and fourth) professional. On average, it took four years for a definitive diagnosis of autism—at age six.
Time and time again, Dua encountered frantic parents running from pillar to post, seeking cause and cure, grabbing at every quack megavitamin or homeopathic strategy, desperate for an answer, any answer, only to hear repeatedly from Sunnyhill’s doctors their child was merely “developmentally delayed” and they should go home and wait.
Says Dua of Sunnyhill: “I heard parents say, ‘There are huge problems here! The doctors don’t listen to us!’ And there were huge waiting lists, too. I’m not talking months. I’m talking years. Some kids might get different diagnoses depending on which doctor they saw or which day of the week it was or whether the sun was shining.” After 18 months at Sunnyhill, Dua resigned his post as medical director. It was apparent to him that a radical new diagnostic process was required to expedite therapy. Thousands of children’s futures were at stake. And so, he knew, were a lot of marriages. Beverley Sharpe was hardly alone: the divorce rate among autistic kids’ parents, caught in this emotional limbo, is 75 percent.
After two years of intensive therapy, at age four, Christian Aquilini spoke his first words. Allison Sharpe was also four the day she looked at her mother and spoke for the first time: “Mama!” (She has not stopped talking since.) But there were—and are—thousands of other B.C. parents unable because of distance from health services, unassertiveness in the face of pediatric intimidation, or, most often, lack of money, to consider ABA. They watch in frustration as their children retreat further into slump-backed, head-down, hand-flapping silence, incapable of finding words or making sense of the cacophony that surrounds them.
It’s when autistic children reach school age that things can get impossibly difficult. As Sharpe and the Aquilinis and countless other parents have learned, the education system is neither funded nor staffed in ways that assist kids who are severely withdrawn, or frightened by loud noises or a lack of routine. Paolo Aquilini hoped he could integrate his son into his Kerrisdale elementary school by offering to help initiate a test program there, and showing educators how ABA therapy—guided by trained learning assistants—could work in regular classrooms. His goal was to get one class of special-needs autistic kids up and running in Vancouver, then apply what was learned there elsewhere in the province. The Vancouver school board was interested. So was the principal. So were individual teachers. But Aquilini—like Sharpe, in her parallel efforts in West Vancouver—ran headlong into the B.C. Teachers’ Federation, which insisted ABA learning assistants could not work in schools as uncertified teachers. And, by the way: who was going to pay for it? The schools? The health-care system? The parents? “It was,” recalls Aquilini, “a quagmire of contending authorities.”
In 1998, fuelled by the success ABA was producing in their children and angered by union and government resistance, Aquilini and Sharpe joined 23 other members of Families for Early Autism Treatment in a class-action suit against the provincial government and the B.C. Medical Services Plan. They claimed the health-care system’s unwillingness to fund ABA treatment violated Section 15(1) of the Canadian Charter of Rights and Freedoms, which guarantees equality under the law, because it discriminated against kids with autism. Aquilini knew this legal fight wasn’t just for Christian; Sharpe understood it wasn’t just about Allison. By then, each had met dozens of other parents—less well-off, less determined—whose hopes for their own children rode on government acceptance that a proven treatment for autism was no less worthy of funding than, say, childhood cancer treatment. No one would question that expensive chemotherapy should be tried on a sick child simply because it might not work. And if ABA did work, it would cost society a lot less for the early treatment than it would to institutionalize thousands of silent, autistic adults.
In 2000, in a unanimous court decision, the parents won their case. They won again in the B.C. Court of Appeal. In response, the B.C. government initiated a policy providing $20,000 a year to parents of diagnosed autistic kids up to age six, and $6,000 a year for autistic school-age kids. But when the legal challenge reached the Supreme Court of Canada, every provincial government lined up to oppose what came to be known as the Auton case (named for one of the B.C. plaintiffs). The provinces had done their math and knew they might be on the hook to provide ABA treatment to many of the 50,000 autistic children nationwide, and to integrate these services into schools.
In 2004, the Supreme Court ruled against the B.C. parents. Equal distribution of funds, the court decided, is not guaranteed under the rules governing the Canada Health Act. Said Michael Lewis, one of the plaintiffs and current president of the Autism Society of B.C., “No one disputes the efficacy of intervention; it’s just no one wants to pay for it.”
After a Monday-night scrimmage of the Arbutus Avalanche bantam hockey team, Christian Aquilini, now 14, joins his parents at a rinkside table at the Arbutus Club. Paolo and Clara are clearly proud of their son’s newfound athleticism—he plays right wing—and his absorption in NHL hockey statistics. Father lures son into a quiz: famous hockey names are tossed out and birthdates volleyed back, a ping-pong of athletes and dates. Finally, Paolo says “Daniel Sedin?”
“September 26,” Christian replies.
“Okay,” Paolo says. “Now here’s a tough one: Henrik Sedin.”
Christian rolls his eyes. “Dad.”
“Didn’t stump me,” Christian says. “That’s dumb.”
“That’s okay,” Paolo teases. “Can’t get ’em all.”
“Dad!” Christian shakes his head in mock exasperation at his father’s stupid joke.
After all, everyone knows the Sedins are twins who play for the Vancouver Canucks. And, of course, his father knows that most of all: along with his two brothers, he now owns the Canucks. Christian excuses himself and goes off with his teammates. “You know,” Paolo says proudly, once his son’s out of earshot, “he didn’t begin skating until he was 11. Now look at him.”
MOST AUTISM STORIES, alas, do not have such happy endings. For 15 years, Vancouver’s Katy Harandi, a 44-year-old Iranian-born computer scientist, has waged a relentless battle to find solutions to her daughter Laila’s severe autism, and—by extension—to help the many parents she’s encountered as a leader in the struggle for the rights of families contending with the illness. In a field of committed activists, her name is spoken in awe. She, too, waited years for a Sunnyhill diagnosis, and was finally told by her pediatrician: “This is a neurological thing. There’s nothing you can do.” She told herself: If I have to go a mile to get an inch of improvement, I’ll go miles and miles.
She tried different therapies with Laila, but settled on a modified version of ABA. The $6,000 annual provincial autism grant didn’t begin to cover the full course of treatment, so Laila struggled daily through public school, unspeaking, bullied, eyes averted, stimming with her right hand. She changed schools three times—University Hill, Kerrisdale, Queen Elizabeth, Lord Byng—and teacher’s aides 20 times. None of the aides was trained to work with autistic kids. Not surprisingly, Laila was shunned by classmates just as she shunned them.
Harandi’s persistence led her to the Canucks for Kids Fund, then to chair the Canucks Autism Network (CAN) and the Phoenix Academy of Learning Society (PALS), an ABA-centred, 20-child independent school in East Vancouver and the only facility in the province dedicated to educating severely autistic, low-functioning kids. Opened in 2007, staffed by 16 teachers, and costing parents $750 a month tuition, PALS operates on a shoestring budget and 10 bursaries subsidized by charitable donations and money from CAN. It has a waiting list of 30. A poster in the school’s foyer lists some of the school’s behavioural objectives and indicates the hurdles the kids there face in reaching some small degree of normalcy:
Walk with an appropriate gait
Catch a ball
As Harandi talks about her efforts on behalf of families with special-needs children, her dark-haired 16-year-old sits a few feet away, eyes downcast, fingertips tapping an unintelligible code into her palm. “When you have a child’s future in your hands,” Harandi says, “you have to make sure you do your best.”
FROM HIS VANTAGE POINT in the GM Place boardroom, high above the ice, Rich Coleman, B.C.’s minister of housing and social development, watches the Canucks and the Red Wings warm up. Coleman knows little of the not-so-simple twists of genetic fate that brought a meat inspector, a computer scientist, and a wealthy businessman together. Nor does he know how a psychiatrist who left Sunnyhill in anger came to codevelop a new accelerated diagnostic/treatment program for the province’s growing number of autistic kids.
Coleman does know, however, that his host this evening, Paolo Aquilini, has—along with some influential friends—been networking tirelessly, lobbying Premier Gordon Campbell, urging the province to take a giant step in confronting the issues around autism. And yes, Coleman tells Aquilini, it’s going to happen. If all goes according to plan, ground for the $25-million Pacific Family Autism Centre will be broken next year in East Vancouver. It will contain facilities for rapid diagnosis, resources for parental and ABA therapeutic training, outreach systems for far-flung communities, and a residential component for visiting families. SFU plans to use the site for autism research.
Coleman tells Aquilini he expects the facility to become Canada’s foremost centre for the detection and study of autism. It will be built, ironically, exactly where the much-maligned Sunnyhill Hospital now stands.