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 Rehabilitation Centre 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 [with autism] 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 [and then] genes and the environment talk to each other.”
Parents shed tears on the last day of the autism program at the Starbright Children’s Development Centre in Kelowna
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 [people] 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 [which] 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 [proof], but I don’t think we should drop the question,” she said.
Raising awareness
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 [of autism] 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 [benefits] 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 … [Her autism] 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 [and] 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 [in the same] way.”
Moving forward
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 [have an experience that is] 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.”
The Canadian government says it will donate up to 200,000 vaccine doses to fight the mpox outbreak in Congo and other African countries.
It says the donated doses of Imvamune will come from Canada’s existing supply and will not affect the country’s preparedness for mpox cases in this country.
Minister of Health Mark Holland says the donation “will help to protect those in the most affected regions of Africa and will help prevent further spread of the virus.”
Dr. Madhukar Pai, Canada research chair in epidemiology and global health, says although the donation is welcome, it is a very small portion of the estimated 10 million vaccine doses needed to control the outbreak.
Vaccine donations from wealthier countries have only recently started arriving in Africa, almost a month after the World Health Organization declared the mpox outbreak a public health emergency of international concern.
A few days after the declaration in August, Global Affairs Canada announced a contribution of $1 million for mpox surveillance, diagnostic tools, research and community awareness in Africa.
On Thursday, the Africa Centres for Disease Control and Prevention said mpox is still on the rise and that testing rates are “insufficient” across the continent.
Jason Kindrachuk, Canada research chair in emerging viruses at the University of Manitoba, said donating vaccines, in addition to supporting surveillance and diagnostic tests, is “massively important.”
But Kindrachuk, who has worked on the ground in Congo during the epidemic, also said that the international response to the mpox outbreak is “better late than never (but) better never late.”
“It would have been fantastic for us globally to not be in this position by having provided doses a much, much longer time prior than when we are,” he said, noting that the outbreak of clade I mpox in Congo started in early 2023.
Clade II mpox, endemic in regions of West Africa, came to the world’s attention even earlier — in 2022 — as that strain of virus spread to other countries, including Canada.
Two doses are recommended for mpox vaccination, so the donation may only benefit 100,000 people, Pai said.
Pai questioned whether Canada is contributing enough, as the federal government hasn’t said what percentage of its mpox vaccine stockpile it is donating.
“Small donations are simply not going to help end this crisis. We need to show greater solidarity and support,” he said in an email.
“That is the biggest lesson from the COVID-19 pandemic — our collective safety is tied with that of other nations.”
This report by The Canadian Press was first published Sept. 13, 2024.
Canadian Press health coverage receives support through a partnership with the Canadian Medical Association. CP is solely responsible for this content.
HALIFAX – The Nova Scotia government says it could be months before it reveals how many people are on the wait-list for a family doctor.
The head of the province’s health authority told reporters Wednesday that the government won’t release updated data until the 160,000 people who were on the wait-list in June are contacted to verify whether they still need primary care.
Karen Oldfield said Nova Scotia Health is working on validating the primary care wait-list data before posting new numbers, and that work may take a matter of months. The most recent public wait-list figures are from June 1, when 160,234 people, or about 16 per cent of the population, were on it.
“It’s going to take time to make 160,000 calls,” Oldfield said. “We are not talking weeks, we are talking months.”
The interim CEO and president of Nova Scotia Health said people on the list are being asked where they live, whether they still need a family doctor, and to give an update on their health.
A spokesperson with the province’s Health Department says the government and its health authority are “working hard” to turn the wait-list registry into a useful tool, adding that the data will be shared once it is validated.
Nova Scotia’s NDP are calling on Premier Tim Houston to immediately release statistics on how many people are looking for a family doctor. On Tuesday, the NDP introduced a bill that would require the health minister to make the number public every month.
“It is unacceptable for the list to be more than three months out of date,” NDP Leader Claudia Chender said Tuesday.
Chender said releasing this data regularly is vital so Nova Scotians can track the government’s progress on its main 2021 campaign promise: fixing health care.
The number of people in need of a family doctor has more than doubled between the 2021 summer election campaign and June 2024. Since September 2021 about 300 doctors have been added to the provincial health system, the Health Department said.
“We’ll know if Tim Houston is keeping his 2021 election promise to fix health care when Nova Scotians are attached to primary care,” Chender said.
This report by The Canadian Press was first published Sept. 11, 2024.
ST. JOHN’S, N.L. – Newfoundland and Labrador‘s chief medical officer is monitoring the rise of whooping cough infections across the province as cases of the highly contagious disease continue to grow across Canada.
Dr. Janice Fitzgerald says that so far this year, the province has recorded 230 confirmed cases of the vaccine-preventable respiratory tract infection, also known as pertussis.
Late last month, Quebec reported more than 11,000 cases during the same time period, while Ontario counted 470 cases, well above the five-year average of 98. In Quebec, the majority of patients are between the ages of 10 and 14.
Meanwhile, New Brunswick has declared a whooping cough outbreak across the province. A total of 141 cases were reported by last month, exceeding the five-year average of 34.
The disease can lead to severe complications among vulnerable populations including infants, who are at the highest risk of suffering from complications like pneumonia and seizures. Symptoms may start with a runny nose, mild fever and cough, then progress to severe coughing accompanied by a distinctive “whooping” sound during inhalation.
“The public, especially pregnant people and those in close contact with infants, are encouraged to be aware of symptoms related to pertussis and to ensure vaccinations are up to date,” Newfoundland and Labrador’s Health Department said in a statement.
Whooping cough can be treated with antibiotics, but vaccination is the most effective way to control the spread of the disease. As a result, the province has expanded immunization efforts this school year. While booster doses are already offered in Grade 9, the vaccine is now being offered to Grade 8 students as well.
Public health officials say whooping cough is a cyclical disease that increases every two to five or six years.
Meanwhile, New Brunswick’s acting chief medical officer of health expects the current case count to get worse before tapering off.
A rise in whooping cough cases has also been reported in the United States and elsewhere. The Pan American Health Organization issued an alert in July encouraging countries to ramp up their surveillance and vaccination coverage.
This report by The Canadian Press was first published Sept. 10, 2024.
