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autism in canada: stats, impact and resources

autism in canada is significant. experts estimate that 1 to 2 per cent of the population is autistic, reports the canadian medical association journal.

by karen hawthorne

jan 15 2024

12 minute read

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while there’s a focus on early diagnosis and intervention for young children, adults can also benefit from an autism assessment. getty images

what is autism spectrum disorder?

autism, or autism spectrum disorder (also known as asd), is a lifelong neurodevelopmental condition that affects the way a person communicates and relates to the people and environment around them. it can impact body language and posture, relationships, social interactions, sensory processing, and how people engage with their interests.

common signs and symptoms of autism spectrum disorder include:

little eye contact
distinct reactions to lights and loud noises
very specific interests
repeating words or phrases (echolalia)
repetitive behaviours, such as spinning or hand-flapping
nonverbal communication or delayed language development
intense reactions to minor changes in routine or surroundings.

the diagnosis and assessment process for autism in canada has advanced with screening in children as young as 12 months and through adulthood. a diagnosis of autism spectrum disorder is based on a combination of specific behaviours, communication delays and developmental disabilities. what’s challenging, though, are long waitlists of more than a year for a diagnosis that is required, for the most part, to access services across the country. ontario autism diagnosis, for example, typically has families spending up to a year on a waitlist, and then waiting anywhere from three months to two years to access services from various providers.

to get a diagnosis, start with your family doctor or pediatrician, recommends autism ontario . if they have only limited experience with autism, they’ll refer you to a specialist like a developmental pediatrician or team of specialists for a developmental assessment and diagnosis. adults who would like to be assessed for autism spectrum disorder should also start with a family doctor or clinic to ask for a referral to a psychologist or psychiatrist for an evaluation.

while there’s a focus on early diagnosis and intervention for young children, adults can also benefit from an assessment. autism assessments are covered and some adults qualify for coverage in certain circumstances but most people over age 18 have to pay out the fee (which may fall under health coverage through an employer).

the redpath centre in toronto which specializes in diagnosis and support for autism and other neurodevelopmental conditions is seeing more adults seeking autism assessments in recent years. people are looking for help because of challenges in forming friendships and intimate relationships or navigating workplace dynamics, cbc news reports . a formal assessment can be helpful for people to gain insight about themselves and get validation from an expert. as an alternative, free online screening tools are also available as a first step at autism speaks canada .

prevalence of autism in canada

experts estimate that 1 to 2 per cent of canada’s population is autistic, reports the canadian medical association journal. at the 40 million population count, as many as 400,000 to 800,000 people are on the spectrum. the estimate is based on reporting by the autism and developmental disabilities monitoring network out of the u.s. centers for disease control and prevention (cdc).

in 2020, the cdc released a study on asd prevalence among adults aged 18 years and older in the u.s. that revealed 2.21 per cent of america’s adults have asd. now in 2023, the cdc reported a jump to 1 in 36 or 2.8 per cent of eight year olds have asd. in 2000, the asd prevalence was 1 in 150 u.s. children, rising to 1 in 88 by 2008. these findings can help states determine the need for diagnosing and providing services for children and adults.

for autism statistics in canada, the focus is monitoring children and youth with asd, with the public health agency of canada releasing its first report from the national autism spectrum disorder surveillance system (nass) in 2018 .

the autism prevalence rate in canada is noted as 1 in 66 children and youth, ages five to 17, are diagnosed with asd.

incorporating key therapies for autism are now available through some school boards for young students, along with programs to make education more inclusive. getty images

according to the report, males were diagnosed with asd four times more frequently than females. nass found that 1 in 42 males (23.9 per 1,000) and 1 in 165 females (6.0 per 1,000) aged five to 17 years old were diagnosed with asd. anecdotally, experts suggest the condition is harder to spot in girls, so they tend to be diagnosed later.

more recent data on asd in canadian children and youth comes from the national, cross-sectional survey – self-reported data – from the 2019 canadian health survey on children and youth.

the survey showed the asd prevalence rate of 1 in 50 canadian children ages one to 17. the survey was developed by statistics canada, the public health agency of canada, and a national research team led by mcmaster offord centre for child studies.

while there’s no clear cause, research suggests that autism develops from a combination of genetic and environmental factors, notes the cleveland clinic . autism tends to run in families when changes in certain genes increase the risk that a child will develop autism. if a parent has one or more of these gene changes, they may get passed to a child even if the parent isn’t on the spectrum.

health-care providers have only identified genetic causes in 10 to 20 per cent of cases. when one child receives an asd diagnosis, the next child has a 20 per cent higher risk of developing autism than the norm.

the public health agency of canada references the diagnostic and statistical manual of mental disorders (dsm-5) in classifying autism as a disorder. asd now includes the subtypes asperger’s disorder, childhood disintegrative disorder, and pervasive developmental disorder.

autism exists on a spectrum with severity levels from mild to severe, resulting in a distinct set of strengths and challenges for each person.

as autism ontario points out , many autistic people prefer the terms neurological “difference” or “condition” to remove the negative connotations of the word “disorder.” essentially, autism means that your brain may process information differently than non-autistic, or neurotypical, people. it exists in all cultures, ethnicities, races and gender identities.

why are autism rates in canada increasing? should we be concerned about growing autism prevalence? experts say autism prevalence in canada needs to be on the public and private radar so services can be developed to meet the demand.

greater awareness means more parents are looking for the signs and pursuing an assessment, and health care providers are more informed and more likely to refer children for assessment, clinical psychologist cara goodwin writes in psychology today .

she also notes that children who may have previously been diagnosed with an intellectual and learning disability are now diagnosed with autism, and the diagnostic criteria have changed and broadened over the years. the availability of services for children has encouraged parents and caregivers to seek a diagnosis to access funding and services.

support and resources for individuals with autism in canada

the three main associations in canada representing autism are:

connecting with a support organization and finding peers to share their own experiences with can be life changing, experts agree. caregivers and people with autism can feel emotionally buoyed by tapping into a peer network and discover more about local resources and programs.

caregivers with a new diagnosis for a child, for example, are given a laundry list of things to do and register for, says carly greenberg, program manager at autism speaks canada , says of funding applications and parent training. “the sooner the paperwork gets done, the better. then there are parent support groups where there’s learning and absorbing.” she sees a lot of value in peer support when people are ready to take that step.

“you can learn about where people go, what they like or don’t like – parents are the best asset. and the emotional piece, too, of being able to see another family walking a similar path, experiencing similar emotions.”

greenberg, who previously worked with the geneva centre toronto , is keenly aware of how peer support for people on the spectrum, whether it’s through messaging or in person, makes a difference. “they see that, ‘i’m not on my own island out here, there are people who think like me and act like me and have similar strengths and weaknesses.’”

incorporating key therapies for autism are now available through some school boards for young students, along with programs to make education more inclusive. studies have shown that access to early interventions, based on proven principles of applied behaviour analysis, or aba, and speech and occupational therapies go a long way to improve cognitive development, language and communication, as well as social and emotional development.

for example, a 2019 canadian observational study published in autism research, the journal of the international society for autism research , compared the one-year impact of public preschool autism intervention programs in new brunswick and nova scotia. in new brunswick, children received up to 20 hours per week of early intensive behavioural intervention, or eibi, in a publicly funded, privately provided program. in nova scotia, children received up to 15 hours per week of pivotal response treatment and positive behaviour support delivered through the publicly funded health care system.

adults with autism are left without many government supports and access to services. getty images

researchers collected parent-reported data on 298 preschoolers (76.5 per cent boys) in new brunswick and 221 preschoolers (86.9 per cent boys) in nova scotia at the intervention start and one year later. the analysis highlighted significant differences at the start: nova scotia children were older, with lower adaptive functioning and more severe asd symptoms than new brunswick children. a year later, however, children in both provinces showed similar adaptive functioning and behaviour gains.

but access to these important interventions is a growing issue.

“with the 1 in 50 number, you’re looking at one child in every couple of classrooms, so that’s a high prevalence of children ages one to 17,” says greenberg. “we suspect it’s even higher. we don’t have a lot of data on adults with autism, but we can extrapolate. those kids grow up.”

even with a diagnosis, there are long waits for government funding and services. in ontario, for example, data collected by the province’s financial accountability office in the 2019 to 2020 financial year reveal that approximately 50,000 children were on the waitlist for autism services at the time. some parents are leaving ontario to secure support faster.

people with asd also have different ways of learning, moving or paying attention, and there’s a need for schools to provide learning that addresses the challenges of autistic students with specialized classes and supported integration in classrooms.

“many autistic individuals have struggled at school because of things like overcrowding, too much sensory input, information not given clearly enough. so it’s incredibly important for autistic learners to be given their information in different ways and for teachers to rethink how they’re delivering their classes,” says bruce petherick, autistic advocate and family support person for autism canada , a national support organization.

“once you start redesigning classrooms to be more friendly toward autistic learners, what you’re actually doing is making the entire system better for everybody,” he says, noting there is a move toward universal design for learning, or udl, in education. the higher education quality council of ontario, for one, has developed a framework for udl adoption.

“rather than using only text, you’re using a video, pictures or experiential way of learning,” petherick explains. “it helps everybody because you’ll have neurotypical children who can certainly understand a teacher speaking to them at nine o’clock in the morning, but at two o’clock in the afternoon, they’re getting really tired, and if they can see the pictures of steps to follow, it makes it clear for them as well.”

generally, people tend to think about autism with regard to children, but what happens for adults with autism in canada?

greenberg talks about the proverbial “cliff” of accessing services. “once someone turns 18, they are cut off from government support and services and the systems are completely different. there are way more hoops to jump through to access those programs and that’s from people who have a diagnosis.”

she also says identifying priority areas as an autism community is difficult because there are so many competing needs based on individual factors, like the person, where they live and what types of support they require. on the response side, she’s seeing more grassroots autism canada organizations for social engagement and employment that don’t require the formal asd diagnosis to participate.

there’s also potential for peer support to help fill the service gap and to generate employment opportunities for autistic adults.

researchers in philadelphia ran a pilot project in 2019 to 2021 to look at the feasibility of autistic-delivered peer support services that were designed to help with community participation, employment, skill-building and social relationships. the trend of peer support services mirrors the rise in autistic self-advocacy and the neurodiversity movement.

now interventions are developed with the input of autistic people to determine outcomes that are relevant to their quality of life instead of measures based on typical neurodevelopment. the pilot in philadelphia had trained autistic service people connect with autistic individuals as often as the individuals felt necessary for things like social activities and exercise.

“autistic-delivered peer support has the potential to fill a service need among autistic youth and adults and create a meaningful employment opportunity for them as well,” the researchers note. “our findings underscore one of the most empowering aspects of autistic-delivered peer support and a reflection of the evolving philosophy of supporting autistic individuals: that lived experience is a core component of transformative work.”

the future of autism in canada

growing awareness of autism has spurred plans for change. there’s greater recognition among health-care providers and policymakers that there are critical shortfalls for people with autism in canada, not only for early interventions, but for medical, living and employment.

now the federal government is establishing a national autism network , working with the autism alliance of canada, the pacific autism family network and autism speaks canada on the development and implementation.

the canadian academy of health sciences has also been engaged in the process and released its report on needs and tools for the strategy . the academy produced an inclusive “easy read” version as well and consulted with autistic individuals and caregivers. the network is a big part of bill s-203, the federal framework on autism spectrum disorder act, that was passed on march 30, 2023 to support autistic people, their families and caregivers.

alexia ostrolenk, a canadian institutes of health research postdoctoral researcher with the autism alliance of canada , hopes a national strategy will help standardize autism care. “depending on your postal code where you live in canada, you don’t get the same standard of care,” she says.

“if you find out that your child is autistic, you may decide to move to get good support and services. then maybe when your child turns 16, you are going to need to move again because you’re planning ahead and there are no adult services where you live. so that’s a huge issue right now.”

another promising trend is the involvement of autistic people in organizations like the alliance. ostrolenk works directly with autistic colleagues on research projects and there are autistic people on the board of directors. “we listen to their feedback and they’re involved in the work,” she says, adding there’s also more thought leadership around inclusivity and creating opportunity for non-speaking autistics.

“how do we involve non-speaking autistics in research and in policy recommendations? how do we make sure that this pretty large part of the autism spectrum is included? it’s easy to include someone who talks, but to me it’s about including everyone.”

she cites a longitudinal study out of the university of michigan that looked at speech development in 130 autistic children from age two to nine. about 30 per cent remained nonverbal, using no or few consistent words by nine years old.

ostrolenk has studied hyperlexia, which is sometimes a part of asd, where young children are drawn to anything written like letters, symbols or numbers. “we noticed that a lot of autistic kids – more than 30 per cent in my research at about four years old – were extremely interested in letters, even though most of them were not speaking.”

the results can help reframe the expectations of parents and direct their focus on something that is working well with their child, instead of being overwhelmed by comparative differences. some kids on the spectrum can read long before they start to speak.

“i think we need to talk about what autistic people do well and like,” says ostrolenk. “a more positive perception goes a long way.”

karen hawthorne

karen hawthorne worked for six years as a digital editor for the national post, contributing articles on health, business, culture and travel for affiliated newspapers across canada. she now writes from her home office in toronto as a freelancer, and takes breaks to bounce with her son on the backyard trampoline and walk bingo, her bull terrier.

autism in canada: stats, impact and resources