One in 66 Canadian children have autism, but no two experiences of the condition are the same — and, as such, creating adequate care programs for all can be extremely difficult.
“It’s true in the same way that no two people in the world have the same experience of life,” said Dr. Evdokia Anagnostou, a senior clinician-scientist at Holland Bloorview Kids Rehabilitation hospital.
“There are many, many different types of autism, and a lot of the research happening now is trying to uncover all the different biological pathways… that we group together to call autism.”
Anagnostou believes such research is necessary to create education and health-care plans that can be accessed by people with all different types of the disorder.
In people with autism, “the brain is wired differently, and because the brain is wired differently, you can expect both things that bring difficulties and things that come through as strengths,” she said.
“The smart thing to do in society is to capitalize on everybody’s strengths.”
In Anagnostou’s view, increased awareness about the disorder is a necessary first step towards better programming for people with autism.
The autism spectrum
To understand the variety of ways autism can manifest itself, one should think of the disorder as being on a spectrum.
In 2013, the American Psychiatric Association merged four previously distinct categories — autistic disorder, childhood disintegrative disorder, pervasive developmental disorder-not otherwise specified (PDD-NOS) and Asperger syndrome — into one umbrella diagnosis of ASD.
Within the broad spectrum of autism, there are several sub-spectra for aspects of the condition — such as severity.
“Some people might have a little bit of social difficulty, some awkwardness or some quirkiness, and maybe they have some very intense interests, but otherwise, they don’t have impairments in their thinking skills,” said Anagnostou.
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“There are other people who have severe intellectual disability, they have self-injurious behaviours, they have no ability to speak or communicate… this is on the spectrum.”
According to the Centers for Disease Control and Prevention, 31 per cent of children with ASD have an intellectual disability, 25 per cent are in the borderline IQ range, and 44 per cent have IQ scores in the average to above-average range.
How autism can affect your body also varies widely.
“There are some people who experience differences in how their gut works, how their immune system works, how they sleep, whether they have epilepsy, whether they have severe anxiety,” she said.
“There are many different spectra under the autism spectrum because there are many different autisms.”
It’s important to note that not all autistic traits restrict your day-to-day activity, according to Anagnostou.
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“We need to make a distinction between… somebody who’s experiencing dysfunction and distress, and just having that trait,” she said.
“Unfortunately, some people cross the threshold… and having those traits causes dysfunction and distress.”
Kelly Bron Johnson has a nine-year-old son on the spectrum, and she’s also on the spectrum herself.
She takes issue with functioning labels, like “high-functioning,” because of how many different variations of autism exist within the spectrum.
“Many of us don’t use because they’re not actually accurate descriptions of our abilities,” Johnson told Global News.
“How others on the outside perceive our challenges (or ease with daily living) is usually not representative of how we feel or are coping or struggling inside.”
Johnson believes more general awareness about the spectrum is required in order to dispel myths about what it means to be autistic.
“Often, the moment the word ‘autism’ is mentioned, people ask about ‘behaviours.’ They picture an uncontrollable person hitting themselves or banging their heads and rocking, not aware of their surroundings,” she said.
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“According to a recent Pathways long-term study, only 20 per cent of people with autism are what would be classified as on the extreme severe end of the spectrum.”
Esther Rhee, national program director at Autism Speaks Canada, verifies this claim.
“Nearly 28 per cent of eight-year-olds with ASD have self-injurious behaviours,” she said. “Headbanging, arm biting and skin scratching are among the most common.”
Previously, clinicians were using four main autism classifications to diagnose children. However, Dr. Anthony Bailey says the spectrum is better because it casts a wider net and is more inclusive.
He’s a professor at the University of British Columbia and an expert in autism diagnosis.
“, clinicians realized they were seeing a lot of children who had autistic features that were nowhere near the level of severity of other kids,” he said. “They couldn’t describe it but it looked as though they had something related to autism.”
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These children would be given the diagnostic label PDD-NOS.
“This is where you put people who you think have something like the main disorder, but it’s sort of the leftover category,” said Bailey.
“Eventually, this process no longer really worked because the bulk of people being diagnosed with ASD in the late ’90s and the first part of this century were actually getting the PDD-NOS diagnosis.”
Those with PDD-NOS were considered to be high-functioning or as having “subthreshold” autism, which often led to a lack of access to the funding or services unlocked by a more severe diagnosis.
“Based on this, the decision was made that although there might be meaningful distinctions between the categories… it was actually better to treat them all as the same thing,” Bailey said.
How autism develops
When it comes to who is more likely to have autism, there’s a wide range of possible factors.
Doctors are certain that genetics play a part, but which genes and how important they are is fuzzy.
“There may be more than 100 — some people would say more than 1,000 — genes that we know now to be associated with some risk of developing autism or another neurodevelopmental condition,” said Anagnostou.
However, genetics both impact and are impacted by the environment which surrounds a person, and both ultimately contribute to the development of one’s body and brain.
“The genetics are the original blueprint,” she said.
“The genetic risk is strong, but there are likely risks in the environment that interact with our genetic risk to ultimately tell us how much the absolute risk for this person is.”
“Because we know it’s genetic, the strongest risk… is having a sibling with autism,” Anagnostou told Global News.
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“If a family has a child with autism, the chances of their next child having autism is much higher than that of the general population.”
According to a recent study, the risk of younger siblings developing an autism spectrum disorder is 14 times higher if an older sibling has autism.
There is also a spectrum when it comes to the severity of one’s autism.
“Certain genetic differences do predict a more severe form of autism, but there are lots of genetic differences that we associate with autism where we can’t predict the severity of it,” said Anagnostou.
“It could be that it has to do with the environment, or it could be that it has to do with the rest of your genes.”
According to Anagnostou, there is no way to determine the severity of one’s autism based on their genetics alone.
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“Your autistic gene (i.e. the gene that puts you at risk) lives in a soup with lots of other genes, and that may actually have a say on how this particular gene is expressed.”
Importantly, Anagnostou emphasizes that not everyone who has a genetic risk will have the developmental disorder.
Rhee says research supports this claim.
“We know that there’s no one cause of autism,” she said.
There are both genetic and non-genetic (or environmental) risk factors, but Rhee emphasizes that increased risk is not the same as cause.
“For example, some gene changes associated with autism can also be found in people who don’t have the disorder,” Rhee said.
“Similarly, not everyone exposed to an environmental risk factor for autism will develop the disorder. In fact, most will not.”
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Rhee emphasizes that vaccines do not have any effect on an individual’s risk of developing autism.
“Each family has a unique experience with an autism diagnosis, and for some, it corresponds with the timing of their child’s vaccinations. At the same time, scientists have conducted extensive research over the last two decades to determine whether there is any link between childhood vaccinations and autism,” she said.
“The results of this research is clear: Vaccines do not cause autism.”
According to Autism Canada, medical professionals use something called the Diagnostic and Statistical Manual of Mental Disorders (DSM) to evaluate patients for autism spectrum disorder. It’s currently in its fifth edition.
How the DSM is used varies from province to province, but nearly every clinician uses it in conjunction with an instrument called the Autism Diagnostic Observation Schedule (ADOS).
“There are four versions of , depending on a person’s verbal ability… all the way from a version for usually very young kids who don’t speak to older individuals who are quite fluent, language-wise,” said Dr. Pat Mirenda, a professor at the University of British Columbia.
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When a person suspected to have autism is brought to a clinician, they will be presented with a series of tasks based on their symptoms.
“The individual’s behaviour is then coded in terms of a number of dimensions,” said Mirenda.
“In addition, there’s often testing that has to do with IQ or cognitive ability speech-language testing to evaluate individual skills, all with standardized instruments.”
The “battery of assessments” varies from province to province, says Mirenda, “but the idea is to get a picture of the person’s overall abilities… and on the basis of this, usually a multi-disciplinary team puts this all together to say, ‘Yes, it’s autism,’ or ‘No, it’s not autism.'”
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Bailey believes the process of diagnosis in Canada stands to be improved. “There’s a lot of slack in the system,” he said.
According to a study by the Public Health Agency of Canada, the average time between parents first expressing concerns and getting a diagnosis is about three years.
Since early intervention is the best way to manage autism symptoms, and early intervention is only accessible after diagnosis, Bailey believes children with more severe symptoms should be given priority.
“For a fairly typical, developed country, we’re not making huge progress in getting a diagnosis earlier,” he said. Often, this has to do with referral patterns.
In British Columbia, Bailey says the average wait time between receiving a pediatrician’s referral and seeing an autism specialist is “well over one year.”
“The delays are way too long,” he said.
Funding and services
Because there is confusion about how to define autism, creating education and health-care programs is a complex process — one that can often feel like trying to fit a round peg in a square hole.
“Depending on the system and your aim, different aspects of autism may be important in how you develop that system,” said Anagnostou.
“If you’re in the education system, it’s not as important that you know the labels, say, as it is important that you understand the functional needs of the child right in front of you.”
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Alternatively, as a medical professional who wants to develop medication, Anagnostou is more focused on the biological underpinnings.
“We need to understand their functional needs, but we also need to understand all the different biology that goes into it so that we can tailor the treatments,” she said.
“For that reason, labels can be counterproductive… but that’s not special to autism. It’s the same with most other developmental conditions and mental health because they also use big umbrella labels.”
Sharon McCarry is a Montreal mom who has a son with autism.
She’s also the director of The Little Red Playhouse, a privately funded early-education facility for children on the spectrum, and she’s concerned about the way the confusion can affect government funding.
In order to receive the Disability Tax Credit from the Quebec government, “you have to have proof that your child has autism, and every five years, they ask you for more proof,” McCarry said.
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The credit is a tax-free monthly payment made to families who care for a child under the age of 18 with an “impairment or mental function disability” which “significantly limits the child in carrying out life habits for a period expected to last for at least one year.”
The monthly sum is usually only $195, but to receive it, you need regular testing by a psychologist — the cost of which can be in the thousands.
“Every five years, you have to go to somebody and give them $2,000 for a test to confirm that yes, you’re still on the spectrum,” she said.
There’s always the chance that the government could decide your child is “too high-functioning” to receive the credit, too.
In McCarry’s view, the process is rigorous and disheartening.
“It’s a Canadian human rights crisis,” she said.
Currently, there is no federal strategy for autism in Canada. McCarry thinks this is unacceptable.
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“The autism community has been yelling for 12 years for us to have a national strategy because every province treats the kids differently,” she said.
The burden of caring for a child with autism is too great, says McCarry. She believes the federal government can do better.
“They call it an ‘inclusive society,’ but it’s inclusive only if you can afford it.”
Where do we go from here?
The Canadian Autism Spectrum Disorders Alliance (CASDA) believes a national strategy is necessary to improve life for Canadians with autism.
The group is a national coalition of organizations and individuals committed to securing a federal strategy for ASD funding and policies, and it has spent the last 12 years creating a recommendation for the government.
According to CASDA chair Debbie Irish, the current system — which calls on each province to create its own autism strategy — results in inconsistent care for Canadians with autism, varying widely between jurisdictions and leaving whole communities vulnerable.
“Without appropriate supports that fit their needs, people with ASD and their families see drastically worse health, education, employment and quality-of-life outcomes,” Irish told Global News.
“These effects ripple throughout their communities. We need to do better.”
CASDA has consulted a wide range of stakeholders to create a recommended strategy.
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It involves three main components: a call for federal leadership to facilitate co-operation across the country, immediate federal leadership in five key areas (affordability and access, information, employment, housing and research), and a cross-government approach to ensure the policy is the same in every province.
“ require deep, broad and meaningful consultations with the autism community, including (but not limited to) people with ASD, their families and service providers across the country,” said Irish.
Irish says the strategy has been brought forward to multiple government representatives. The hope is that the country’s major political parties will incorporate the recommendation — or some version of it, at least — into their platforms for the federal election in October.
“Currently, only the NDP has confirmed commitment to a national ASD strategy in their platform for the upcoming federal election,” Irish told Global News.
The people at CASDA believe the only way Canada can capitalize on everybody’s strengths is for the federal government to declare a national strategy.
“It would help realize our vision that all Canadians with ASD and their families have full and equitable access to the resources they need across a lifespan where and when they need them,” she said.
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