Navigating the maze

With a growing number of diagnoses, there are now more options for children diagnosed with autism spectrum disorder, Tracey Tong reports

Autism concept, human head from puzzles at center of a maze. 3D rendering

When Heather M. first learned that her seven-year-old son, Joshua, might have autism spectrum disorder, she worried about what that meant for his future.


When her partner’s younger brother was diagnosed more than 25 years ago, it wasn’t really something that was discussed openly, said Heather, who asked that her last name not be used for the story to protect her son’s privacy. “But things have really changed. Everyone knows someone (with autism spectrum disorder), and people have their own stories to share. Since (my son’s) diagnosis, we’ve learned that there are many other families like us, and so many different resources available… We’re just learning to navigate right now.”


Researchers in major centres around the world are discovering more about autism every day, says Laurie Mawlam, acting executive director for Autism Canada.   

There is definitely more known about autism now than in the past and this knowledge is growing all the time, agrees Leigh Giles, clinical director of ABA Connections and a board-certified behaviour analyst who specializes in providing evidence-based early intervention to children diagnosed with an autism spectrum disorder (ASD) through the application of applied behaviour analysis. 

“The prevalence rate of an autism spectrum disorder has definitely grown over the years and this has much to do with the understanding of what an ASD is,” Giles says. “This largely includes the understanding that ASD is a range, or spectrum, of challenges defined by impaired social communication and/or interaction and restricted and/or repetitive behaviours,” she says.

Giles goes on to add that while a diagnosis must require those two impairments, the manifestation and severity of these impairments can differ from individual to individual.

Although there isn’t a clear reason why, Mawlam says that there is a strong opinion that it is epigenetic, meaning there may be an underlying genetic predisposition that is triggered by environmental factors.


In 2018, the National ASD Surveillance System released a prevalence rate of 1 in 66 Canadian children being diagnosed with an ASD. Prevalence is also reported to be four times higher in males (1 in 42) than in females (1 in 165). The NASS also reported the average age of diagnosis in Canada is six years of age and almost 90 percent of the population examined was diagnosed at 12, although Mawlam adds that research has found that autism can sometimes be detected at 18 months or younger, and that by age two, a diagnosis by an experienced professional can be considered very reliable. 

The public is becoming more familiar with ASD. Over the past few decades, the general public has gradually been exposed to individuals with ASD either through family members or friends or the media, says Mawlam. “I believe that there is a growing acceptance in Canada of children and adults who are on the autism spectrum. Any societal change is gradual, but I am optimistic that we are heading in the right direction towards an inclusive society.”


Emily Sheehan agrees.


“In today’s world, stigmas are being broken down everywhere, autism is no different,” says Sheehan, whose book, Parenting Autism: Lighting the Way Forward, A Handbook for Parents and Caregivers, explains how parents and caregivers can begin teaching their child in their own homes by using the same techniques therapists and educators use. “It’s wonderful that parents and caregivers with children on the spectrum and individuals on the spectrum can openly discuss their diagnosis. Of course, there are still many barriers, but there is more and more overall enlightenment every day.”


The three experts agree that early intervention is the reason why early diagnosis is so critical. An early diagnosis means more intensive therapy can begin sooner, possibly lessening the symptoms of the condition, says Mawlam. After a child is diagnosed, the health practitioner who made the diagnosis will refer the child to a local treatment centre for services such as speech and occupational therapy, she says.


“We urge parents not to accept their doctor’s advice if he or she proposes a ‘wait and see’ approach,” says Mawlam. “Our advice to parents is this: if your child has normal development and then regresses, you should seek help immediately.”


Early diagnosis can also assist with accessing services, many of which unfortunately have an age restriction or lengthy wait times, says Giles. In Ottawa, parents should also be instructed to contact their regional provider (CHEO in this area) to begin the process of accessing services from the Ontario Autism Program. With an earlier diagnosis, children will have a better chance of accessing services and intervention in a timely manner.

The child’s school will usually create an independent education plan (IEP) – a written education plan designed to meet a child’s learning needs, says Mawlam. Depending on the amount of funding that a school board has designated for special education, the child is assigned an educational assistant in order to receive individual attention in the classroom. Giles says that supports can be also be provided in the classroom through psychologists, social workers and specialized program classes that provide low-ratio programs specifically designed for children and youth diagnosed with an ASD.

Beyond the classroom, there are many options for autism services in Ottawa, including an active chapter of Autism Ontario, which has support groups for parents and ASD adults, and which also organizes autism-friendly events for children.  Giles lists privately funded options for children and youth diagnosed with an ASD in the Ottawa community as ABA therapy, speech therapy, occupational therapy, social groups, specialized programming, summer camps, one-to-one support and respite. Eligibility varies from organization to organization.

Giles acknowledges that it can be extremely overwhelming to receive a diagnosis of an ASD and that many families mention feeling lost or confused with what they should do next.

One of the keys is to get creative in searching for services, Sheehan says. “Parents should explore many services for their children and not just services tailored to kids on the spectrum,” she says. “It’s all about figuring out what works for your child and what will motivate them to engage in the world around them.”



What happens when a child ages out of the system?

At the moment, the Ontario Autism Program provides funding for children up to the age of 18, says Giles. “Once they have aged out of the OAP, the availability of services and funding for these services becomes limited. Parents are often encouraged to begin planning for these services once their child is around 12 years of age in order to ensure supports are in place when they are adults.”


Over the past few years, autism organizations have realized that there is a need to support adults, says Mawlam.  Autism Canada has organized a closed forum, ASD Central, which provides an opportunity for ASD adults to exchange ideas, offer support and share their news over Facebook.


The Ottawa Chapter of Autism Ontario has two groups for ASD adults: Aspirations is a group for adults and older teens (ages 17 and up), and Asperfemme is a support group for adult women with high-functioning autism.


Early Signs of Autism (12 to 24 Months)

  • Often begins to develop language then loses it, or doesn’t acquire language at all
  • May appear deaf, respond unevenly or not at all to sounds
  • Difficulty consoling during tantrums
  • Difficulty sleeping / wakes at night
  • Does not “point and look”
  • Failure to bond
  • Self-restricted/selected diet
  • Limited imaginative play
  • Not interested in playing with other children
  • Chronic gastrointestinal problems
  • Repeated infections


Source: Autism Canada