There were several hot-button issues that dominated the headlines this year, but autism was easily one of the most contentious.
Since January, advocacy groups across the country have protested the lack of available services for children with autism. Misinformation continues to run rampant, with some Canadian parents still turning to dangerous “cures” for autism — like bleach — against the advice of medical professionals.
But it wasn’t all bad. 2019 was also a year of advancement and discovery for autism researchers, and according to experts, this has helped the broader society develop a more meaningful understanding about what it means to have autism.
“I think there’s a movement towards valuing neurodiversity and … acknowledging autism as a form of disability, but also seeing the importance of accepting difference,” said Stephen Gentles, an autism researcher at the Offord Centre for Child Studies in Hamilton, Ont.
“People are starting to see the value in the different ways that people are wired.”
Evdokia Anagnostou, a senior clinician scientist at Holland Bloorview Kids Rehabilitation hospital in Toronto, agrees.
“I’m not saying there is no stigma. There’s plenty of stigma,” she said.
“But I think as a society, we’ve started recognizing that there are strengths that come that we could capitalize on.”
Anagnostou believes public figures like Greta Thunberg, who is on the autism spectrum, have greatly contributed to this shift.
Here, Gentles and Anagnostou share what they learned in 2019 — and what they hope will be achieved in 2020.
‘Precision medicine for autism’
How scientists understand the needs of people on the autism spectrum has vastly shifted over the last 12 months.
Through a series of recent studies, doctors and scientists have a better understanding of how both genetics and environment contribute to each individual experience of autism.
“How much do genes contribute versus how much the environment contributes?” said Anagnostou.
“We learned that genes are extremely important … Genes set you on a path genes and the environment talk to each other.”
This was a very important finding because it can provide families with “peace of mind.”
“They worry about whether they’ve done something wrong,” she said. “What we call autism is in our genetic code and don’t have much control over that.”
Anagnostou says these findings indicate the beginning of “precision medicine for autism,” where you “individualize the treatment to the specific biology of the patient in front of you, rather than some diagnostic label within the group.”
Gentles hopes this groundbreaking research will help medical professionals learn more about the many different variations of autism.
Years ago, the diagnostic and statistical manual of mental disorders (DSM) listed four types of autism, and every person who received an autism diagnosis was placed into one of the four types based on their symptoms.
This was changed to a “full spectrum” to account for the “genetic markers can vary so much from person to person,” Gentles said.
As researchers learn more about how genetic coding and the environment combine to create different variations of autism, Gentles predicts the DSM will change again.
“We’re not just starting, but we’re still at early stages of learning,” he said.
“There are many different ways to categorize autism.”
Both Anagnostou and Gentles are hopeful this will make treatment more effective.
More people have autism — but why?
At present, one in 66 Canadian children have autism. The rates are slowly going up, but doctors have yet to figure out why.
“One explanation could be that awareness has gone up,” said Anagnostou. More parents are aware of autism and its unique symptoms, leading more children to be examined for it.
However, since the DSM moved to a “full spectrum” approach, the criteria for autism is more broad. This could also be leading to more diagnoses overall — some of which may actually be misdiagnoses.
“We diagnose more people who have very few difficulties or impairments but meet the criteria with autism now than we did before,” said Anagnostou.
“Lots of kids who got an intellectual disability diagnosis before … get an autism diagnosis now.”
Anagnostou said there’s currently no evidence to suggest that the increase in diagnoses has anything to do with the environment. However, that doesn’t mean it’s impossible.
“Is something in our environment talking to our brain and causing an increase? We don’t have that , but I don’t think we should drop the question,” she said.
There is a heightened awareness about autism and what it’s like to be autistic, but Anagnostou says there’s a long way to go.
“I think stigma comes from not understanding that the difference comes with both strengths and weaknesses,” she said.
“Autism has significant challenges, and we work to try to make life better for people who experience challenges, but we shouldn’t ignore the fact that autism may present some trends in terms of looking at the world from outside the box.”
It’s also true that having autism might make one person better suited for a job than another person.
“We can capitalize on these and integrate people with autism in our employment settings, in our school settings and in our families in more meaningful ways,” she said.
Greta Thunberg is an excellent example of this, said Anagnostou.
“Part of her autism characteristics make her very determined and not distracted … actually makes her a very effective advocate for a good cause,” she said.
However, Anagnostou warns that we also need to start giving voice to people with other kinds of autism.
“We tend to put forward people with autism who aren’t representative of all the types of autism,” she said.
“Positive role models are very important Greta is spectacular, but we need to be thinking about the value of all the other people on the autism spectrum who may not be able to advocate way.”
In 2020 and beyond, Gentles thinks there will be more attention paid to helping parents navigate the difficult first days, weeks and months after a child receives an autism diagnosis.
“It’s generally hardest at the early stages,” he said. “Soon after diagnosis, there’s this windfall … the parents have to learn about the complex disorder of autism, which does come with disability, and then how it manifests in their child.”
He also hopes that there will be more of a focus on supporting adults with autism.
“We’ve really focused on the needs of young children … but we still have a long way to go to support adults with autism,” he said.
“People over 50 who’ve just been diagnosed with autism … will a lot different from the very young children who are diagnosed. We don’t even really know what aging and autism looks like.”
“We have a lot to learn from autism and people with autism about making our society more inclusive in a way that benefits everyone.”
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