Neuroscientist Mayada Elsabbagh has spent her career unravelling the mysteries of the infant brain. She studies neural pathways. She uses high-tech sensors and infrared eye-trackers to examine the differences in babies’ brain signals when they gaze at a face or a rubber ball.
The assistant professor at McGill University in Montreal has a PhD and a long list of credentials and cutting-edge studies to her name.
What’s the point of diagnosing earlier if there is little help for those children already identified on the autism spectrum?
Yet in Canada and elsewhere in the world, these kids languish on wait lists for diagnosis and treatment, sometimes for years, while parents are left to find their own way through a labyrinth of publicly funded and private services.
The gap between what scientists have shown and what policy-makers are failing to provide “hurts my brain,” says Elsabbagh.
It’s a gulf that has been growing over the past decade, fuelling what has become a major public health conundrum. As rates have risen — to an estimated one out of every 88 children, according to the Centers for Disease Control and Prevention in the U.S. — investments in early treatment, special education and supports for those with autism throughout the lifespan have not kept pace.
Even the real numbers are hard to know. There is no single clearing house that tracks children in Ontario awaiting assessment, diagnosis and treatment. Parents must navigate a baffling bureaucracy. Untold numbers remortgage their homes or borrow money from relatives for private therapists, treatment programs and schools, so their children don’t have to wait.
But when it comes to providing seamless access to treatment and helping parents cope, we are backward, says Suzanne Lanthier, who spent six years as executive director of the advocacy and research group Autism Speaks Canada, and has a 13-year-old son with autism.
“The majority are hitting kindergarten without one minute of intervention.”
Deckard, her only child, is now 3. After a year of waiting and being referred from one specialist to the next, he was diagnosed with autism last January. In June, he joined the wait list for intensive behavioural intervention (IBI), a proven therapyfunded by the province. It could take another year to 18 months before he gets a spot.
This long road is what researchers refer to as “the diagnostic odyssey” — the time that lapses between a parent first consulting a physician and the day they find out their child is on the autism spectrum. The process can take two years.
“I try to do one day at a time, because I don’t know how long we’re going to wait,” says Peters, 36, a graphic designer whose full-time ‘job’ is now chasing services for her son and filling out application forms.
“My anxiety levels are really high.”
In his second year, Deckard showed some of the common red flags for autism. He wasn’t sayingany words, didn’t make eye contact and could be absorbed in a single toy for an hour, repeating the same unusual rituals with it rather than interacting with other children or adults. He didn’t point at things he wanted and had ferocious meltdowns.
At the standard 18-month checkup, his mother insisted her son needed another opinion and the doctor referred Deckard to a speech and language pathologist. When he finally got an appointment, at 21 months, the speech therapist concluded the little boy’s social skills were equivalent to those of a 9-month-old. She recommended further assessment.
He bounced first to a pediatrician, then a developmental pediatrician. While the six-month wait continued, Peters enlisted an occupational therapist to help with his motor skills and eating problems, and continued with speech therapy, which initially provoked so much screaming that after accompanying him once, his grandmother couldn’t bear to go back.
Last January, Peters sat in an office at St. Joseph’s hospital in Toronto with her husband Gord and their son and tried not to cry as the doctor handed her a folder bulging with autism handouts and lists of resources. Many stressed the importance of acting early. Yet already, a year had passed since she had first sought help.
Specialists say it is not uncommon for parents to notice the unusual behaviours or developmental lags that can indicate autism as early as 12 to 18 months and alert the doctor. Yet the average age of diagnosis in Canada is 4.
A big reason is the shortage of physicians trained to diagnose autism, which can be tricky and subjective, requiring an expert’s assimilation of reports from parents, medical details and observations of a child’s behaviour.
Ontario has about three dozen developmental pediatricians, who specialize in autism and other developmental disorders, and a handful of psychiatrists and pediatricians trained to do the appropriate diagnostic tests. In parts of the province, there are none. Parents who don’t want to wait can go to a psychologist for a diagnosis, which costs $ 2,000 to $ 4,000, depending on the complexity of the child’s symptoms.
As the Peters family soon discovered, reaching the end of the diagnostic odyssey is only the beginning of the next odyssey — finding treatment.
In Ontario, the only long-term treatment funded by the province is intensive behavioural intervention (IBI), for more severe cases. It is a rigorous form of applied behaviour analysis (ABA), which is the most common and scientifically-tested method of autism therapy, teaching children through repetition and positive reinforcement and delivered using a range of approaches and settings. IBI refers to ‘applied behaviour analysis’ practised 25 to 40 hours a week with a therapist, working one-on-one with a child at home or in another private space.
Ontario has quadrupled its spending on autism services over the last decade to $ 186 million, according to the Ministry of Children and Youth Services. In the latest fiscal year, the province invested $ 115.8 million in IBI, but it doesn’t come close to meeting demand. As of last June, there were more children on the wait list than receiving IBI — 1,700 waiting versus 1,400 in treatment.
And here is another measure of the ordeal that families face: children don’t just wait for IBI treatment; before that, they join a wait list to determine whether they are even eligible to receive it. Not every child is, particularly those at either end of the spectrum. After Deckard Peters was diagnosed, it took three months to get an assessment to see whether he qualified to join the IBI wait list.
Last year, the Ontario government began funding short-term blocks of ABA to help children with specific skills. But the therapy is far less intense, the equivalent of a few hours a week over two to six months. Even so, the demand reveals how desperately families need help. There are currently almost 5,200 children waiting for those services.
“What we don’t know is which intervention makes a difference for which kid.”
But parents who want to try other options have to foot the bill themselves, or cobble together a mix of supports using whatever funding they can get for preschool speech and language services, occupational therapy or social skills programs offered through local agencies.
As Deckard Peters waits for IBI, his mother does what she can. She has taken him to art therapy to get him comfortable with getting dirty and making a mess — something he couldn’t tolerate. She and Gord attended parenting classes geared to families of children with disabilities, and enrolled Deckard in a $ 500-a-month preschool for children with developmental delays five mornings a week.
But they feel a mounting sense of urgency because when it comes to autism treatment, the mantra is always “the earlier the better.”
There is a critical window that opens between 18 months and 2 years of age and extends until about 7, when researchers believe intensive intervention has the most potential to boost a child’s cognitive and social skills, language and behaviour, and change the trajectory of their lives.
The reason is neuroplasticity, the brain’s ability to rewire itself and change the way it processes information. Young brains are more malleable, so finding the right treatment can spark long-lasting changes in neural pathways, improving a child’s language, social skills and, in turn, behaviour.
“There’s good evidence that it doesn’t just change behaviour, but is linked to changes in the responses of the brain,” says Dr. Lonnie Zwaigenbaum, a developmental pediatrician in Edmonton and researcher at the University of Alberta.
Children can still learn and develop after that and throughout their lives, but the importance of acting early continues to drive the quest to identify children at younger ages.
But here again we encounter the chasm between science and policy.
The American Academy of Pediatrics recommends physicians screen all children for possible signs of autism at both 18 and 24 months. The Canadian Paediatric Society has no policy on screening. In Ontario, practices range according to physicians’ experience and training.
There are tools available, such as the Modified Checklist for Autism in Toddlers (M-CHAT) parent questionnaire and other general developmental screens for infants. But some doctors only use them if there is a family history or parents request it.
And screening is a subject of debate. Last year in a controversial study, McMaster University researchers rejected screening for infants and toddlers, arguing there is not enough evidence the tools are accurate.
Last month, an observational study from Johns Hopkins and Harvard Medical School researchers found children with autism appeared to develop normally for the first six months, but over the following two years showed a wide variation in behaviour and symptoms. This reinforces the notion that autism reveals itself through a pattern of development, rather than through testing at any single point. The researchers concluded that screening should take place at regular intervals through infancy andearly childhood.
Today, a diagnosis at age 2 is generally considered reliable. But that doesn’t mean every child can be identified by then, notes Zwaigenbaum.
In about 10 to 15 per cent of cases, the diagnosis is reversed after reassessment at age 4. Those children could still be on the spectrum, but with better skills and fewer symptoms as a result of the therapies, and those symptoms could reappear later.
There will always be children who won’t be identified until later, when behaviour is triggered by the transition to school or adolescence, and social deficits become more apparent.
Researchers are learning how complex and variable the disorder can be, affecting each child differently throughout life. As they say: “If you’ve met one child with autism, you’ve met one child with autism.” It defies hard and fast rules.
“I think we all came into this hoping to diagnose at 18 months,” says Zwaigenbaum.
“But the tremendous heterogeneity among children should caution us against a one-size-fits-all approach that all children can be diagnosed with the same approach at the same age.”
“So you have a diagnosis. How much money do you have?”
That’s the bottom line for those who have a child with autism, says Suzanne Lanthier. And it infuriates the Toronto mother, who came face-to-face with the realities of a two-tiered system when her son, now 13, was diagnosed a decade ago.
As executive director of Autism Speaks Canada for six years until last spring, Lanthier knows the landscape intimately and the daily battles faced by families.
It can cost anywhere from $ 80,000 to $ 100,000 a year for private services for IBI therapy, private school, speech and language programs or occupational therapy.
Those without money must wait. Many parents mix and match, applying for some funded programs and opting to pay for others.
But either way, it means making their own way through a confusing system of regional centres, hospitals and research hubs, agencies licensed to provide treatment and the multiple professionals offering a range of conventional and emerging therapies.
The day her son was diagnosed, Farida Peters walked out of the physician’s office holding a stack of material that was supposed to serve as a crash course in autism and how to access services.
For the first few weeks, “I’d look in the folder and cry all the time because I didn’t understand what any of it meant.”
It was like being plunked on a new planet without a map or compass.
She shares her story in the family living room, lined neatly with bins of toys. Deckard moves from the mini-basketball hoop to his inflated Bozo the Clown, while his dad reminds him to say “help” when he gets frustrated. He climbs up behind his mother and runs his fingers through her hair. He stops and giggles, brown eyes sparkling, when he spots his reflection in the glass cabinet doors.
“There are people out there to help you,” she says. “You just have to find them.”
She pulls out the two key tools in her survival kit. One is a striped journal to record the name, phone number and date of every phone conversation or visit with the scores of agencies and specialists she has contacted about Deckard.
The other is a blue bag of binders crammed with autism handouts and forms — a portable resource centre she wades through in her ongoing pursuit for help.
She has lost track of how many times she has recited her son’s history. She even took a 90-minute course on how to fill out the time-consuming applications for funding and services that have become part of her routine.
“If a child was diagnosed with cancer or cystic fibrosis we wouldn’t just send (parents) out there and say ‘find your own care plan,’ ” says Dr. Alvin Loh, a developmental pediatrician at Surrey Place Centre and co-lead of the Autism Treatment Network (ATN) in Toronto.
The effect can be paralyzing.
The ATN, a partnership between Surrey Place, Sick Kids and Holland Bloorview Kids Rehabilitation Hospital, launched in 2008 as part of a U.S. network funded by Autism Speaks. It was designed to co-ordinate services for autism and the medical problems that often go hand-in-hand with the disorder, including gastrointestinal problems, allergies and trouble with sleep and eating. It is also where the Peters family finally got some relief.
Children who are clients have access to one-stop services and a nurse co-ordinator who guides them through their options. In return, they are registered anonymously in a research database.
It holds promise as a model. But that would require more money. For now, those on the front lines often feel they have their fingers in the dike.
“I’m dealing with marriage breakups and people who can’t take their children to family celebrations because of their child’s behaviour,” says nurse-coordinator Dianne Davison, an expert in the system who links families to the most appropriate supports.
She sees depressed parents, grandparents stepping forward to cover costs of private treatment, and children acting out in frustration. There are solutions, she says. But families need someone to guide them.
Davison dreams of a system where there are teams to ease the path for every family coping with autism. Instead, “all we can do is take one case at a time.”