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Autism after 18: Why the system is failing Canadian adults on the spectrum – Global News

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Every day, Maureen Francella visits her son Steven at a psychiatric hospital and every day, he asks if he can come home.

“Are you taking me home yet? Am I better now? Did I break things? Are you angry with me?” he asks his mother.

“It’s tough to leave him. I have to say, ‘I can’t bring you home,’” Francella, told Global News.

Steven, 36, has severe autism spectrum disorder (ASD), and he often experiences moments of stress and frustration, becoming violent towards himself and others.

Francella and her husband, who are both 60, are unable to take care of him at home. He currently resides at psychiatric ward at St. Joseph’s Hospital in Hamilton, Ont.


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Steven was brought to the emergency room after a particularly bad episode, and Francella had him admitted to the psychiatric ward for what was supposed to be a short stopover before a long-term care facility. He’s been there for 14 months.

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Francella is terrified Steven will never get into another care facility, given the long wait times and limited space.

“We’ve been [on the wait-list] for a very long time, long before he was ever admitted to [the emergency room],” she said.

It’s a reality for dozens of families across Canada: Once a child turns 18 — an adult in the eyes of the government — they typically lose access to a lot of government funding and services intended for children. Autism services are currently a provincial jurisdiction, but many adults like Steven end up in psychiatric wards where they don’t get the care they need.


Steven’s mom is terrified he will never get into another care facility, given the long wait times and limited space. (Photo courtesy of the Francella family)


Courtesy of the Francella family

For a few years, Steven lived in a group home during the week, going home to his parents on the weekend. The arrangement worked for three years, but then Steven started becoming more violent, self-injurious and prone to destruction of property. He was home one weekend with his mom and a support worker when things took a turn.

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“I was putting groceries away and he was sitting on the sofa, interacting with his support worker,” Francella said. “He suddenly got up, started biting himself, hitting the walls, [he] broke the television and smashed the lamp. He tried to put his head through patio doors.

“We looked at the damages and [his injuries] and his support worker said to me, ‘Maureen, you can’t continue to do this.’”

Francella couldn’t give Steven the type of care he needed, but she doesn’t think the psychiatric ward is the right place for him either.

“The number one treatment of patients [at the psychiatric hospital] is medication, but Steven has been overly sensitive to all medications he’s ever taken in the past, even Tylenol,” said Francella. “He’s been given very large doses of a number of medications here, [and none] had a positive impact.”


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In the clinical setting of a hospital, Francella said Steven is also missing out on the type of human interaction and socialization he craves.

“He should be in a supported home of his own [and] that could look … many different ways,” she said.

Mainly, Francella said Steven needs a safe and comfortable home that offers 24-hour support.

The age of 18 isn’t a ‘magic number’

Many types of autism support greatly decrease or even stop altogether when a person turns 18. According to Dr. Evdokia Anagnostou, senior clinician scientist at Holland Bloorview Kids Rehabilitation Hospital in Toronto, this is the wrong approach.

“Autism is a developmental condition. By definition, you don’t stop having autism when you turn 18,” she told Global News. “There’s [nothing] magical about the number 18. People a day under 18 will get quite a bit of service, and the day they turn 18, the services start decreasing rapidly.

“The adult sector is not as well-developed as the childhood sector for autism.”

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In her view, there need to be way more support available for adults with autism, and among other things, they should address housing, employment, healthcare and recreation.

“What is a good life for a person with autism? … All the things that we consider to be part of a good life when we don’t have autism,” said Anagnostou.

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“There is a cliff parents talk about after their kids transition out of their childhood system, and it comes from this lack of a well-developed adult sector that meets the needs of the kids so that they can have a good life.”






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Without these services, families can experience burnout and people on the spectrum can fall through the cracks.

It can also lead adults with autism to homelessness and other risky situations.


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“We know that people with autism are over-represented in our homeless population. We know that people with autism are over-represented in long-term care facilities,” she said.

There’s very little data on autism in homeless populations, but a 2011 survey conducted in Wales by the National Autistic Society Cymru reported that 12 per cent of their adult participants disclosed being homeless at some point in their lives.

“It’s fair to say that the sector is experiencing quite a bit of distress. The families are experiencing quite a bit of distress and [so are] the individuals with autism,” Anagnostou said.

Transitioning to adulthood

When a person with autism turns 18, a lot of things in their life change very suddenly.

Community worker Jennifer Bodiguel, the co-ordinator of the Transitioning to Adulthood program at New Heights School & Learning Services in Calgary, says continuity of care can make a world of difference.

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“Going from childhood into adulthood, almost everything changes,” said Bodiguel. “You don’t have your pediatrician, you don’t have your high school teachers, you don’t have some of the funding childhood gets you.”






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Families say adults with autism need more support


Families say adults with autism need more support

The Transitioning to Adulthood program aims to lessen the blow, and “almost all” of the students at New Heights have signed up.

“Clearly, the parents are really wanting support,” Bodiguel said. “I look at our transition program as a bridge [to supports that are out there].”

The program focuses on four main areas: employment, education, independent living and social environments.


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“The thing about individuals with autism is that they [typically] thrive in routine and fear the unknown. Graduation and adulthood is the ultimate fear of the unknown. They haven’t a clue what’s next,” she said.

Bodiguel often finds herself accompanying members of the program to outreach programs or job fairs, just to help them feel comfortable with someone they recognize nearby.

“I’m just trying to be that familiar face for them [so they can] access what’s actually out there.”

Call for a national strategy

There are gaps in care throughout the system, but according to Autism Canada, the major problems are the availability of post-secondary programs, employment, innovative housing solutions, mental health support and support with medical health conditions commonly associated with autism.

Mental health support is crucial. Seventy per cent of individuals on the spectrum have a comorbid mental health condition (like anxiety, depression, psychosis and suicidality), with 40 per cent having two or more disorders.

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“For a family with a young child, they may be able to choose between a handful of early-intervention or social skills programs in their community. However, as one grows up, the selection decreases significantly if available at all,” Autism Canada said in a statement to Global News.






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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.


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Francella agrees — the government needs to make drastic changes, and fast.

“It’s extremely traumatic to go day in, day out, knowing that nothing is changing and being scared every day that Steven might end up being here for a very long period of time,” said Francella.

“I believe the government should be supplying money to help everybody — not just autistic individuals — but anybody with a disability who requires a home. No one should have to remain in a hospital that doesn’t need to be in the hospital.

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“Every person out there should have the supports and services they need for their child, teenager or adult to live a happy independent life.”

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— With files from Caryn Lieberman

Meghan.Collie@globalnews.ca

© 2020 Global News, a division of Corus Entertainment Inc.

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Looking for the next mystery bestseller? This crime bookstore can solve the case

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WINNIPEG – Some 250 coloured tacks pepper a large-scale world map among bookshelves at Whodunit Mystery Bookstore.

Estonia, Finland, Japan and even Fenwick, Ont., have pins representing places outside Winnipeg where someone has ordered a page-turner from the independent bookstore that specializes in mystery and crime fiction novels.

For 30 years, the store has been offering fans of Agatha Christie’s Hercule Poirot or Arthur Conan Doyle’s Sherlock Holmes a place to get lost in whodunits both old and new.

Jack and Wendy Bumsted bought the shop in the Crescentwood neighbourhood in 2007 from another pair of mystery lovers.

The married couple had been longtime customers of the store. Wendy Bumsted grew up reading Perry Mason novels while her husband was a historian with vast knowledge of the crime fiction genre.

At the time, Jack Bumsted was retiring from teaching at the University of Manitoba when he was looking for his next venture.

“The bookstore came up and we bought it, I think, within a week,” Wendy Bumsted said in an interview.

“It never didn’t seem like a good idea.”

In the years since the Bumsteds took ownership, the family has witnessed the decline in mail-order books, the introduction of online retailers, a relocation to a new space next to the original, a pandemic and the death of beloved co-owner Jack Bumsted in 2020.

But with all the changes that come with owning a small business, customers continue to trust their next mystery fix will come from one of the shelves at Whodunit.

Many still request to be called about books from specific authors, or want to be notified if a new book follows their favourite format. Some arrive at the shop like clockwork each week hoping to get suggestions from Wendy Bumsted or her son on the next big hit.

“She has really excellent instincts on what we should be getting and what we should be promoting,” Micheal Bumsted said of his mother.

Wendy Bumsted suggested the store stock “Thursday Murder Club,” the debut novel from British television host Richard Osman, before it became a bestseller. They ordered more copies than other bookstores in Canada knowing it had the potential to be a hit, said Michael Bumsted.

The store houses more than 18,000 new and used novels. That’s not including the boxes of books that sit in Wendy Bumsted’s tiny office, or the packages that take up space on some of the only available seating there, waiting to be added to the inventory.

Just as the genre has evolved, so has the Bumsteds’ willingness to welcome other subjects on their shelves — despite some pushback from loyal customers and initially the Bumsted patriarch.

For years, Jack Bumsted refused to sell anything outside the crime fiction genre, including his own published books. Instead, he would send potential buyers to another store, but would offer to sign the books if they came back with them.

Wendy Bumsted said that eventually changed in his later years.

Now, about 15 per cent of the store’s stock is of other genres, such as romance or children’s books.

The COVID-19 pandemic forced them to look at expanding their selection, as some customers turned to buying books through the store’s website, which is set up to allow purchasers to get anything from the publishers the Bumsteds have contracts with.

In 2019, the store sold fewer than 100 books online. That number jumped to more than 3,000 in 2020, as retailers had to deal with pandemic lockdowns.

After years of running a successful mail-order business, the store was able to quickly adapt when it had to temporarily shut its doors, said Michael Bumsted.

“We were not a store…that had to figure out how to get books to people when they weren’t here.”

He added being a community bookstore with a niche has helped the family stay in business when other retailers have struggled. Part of that has included building lasting relationships.

“Some people have put it in their wills that their books will come to us,” said Wendy Bumsted.

Some of those collections have included tips on traveling through Asia in the early 2000s or the history of Australian cricket.

Micheal Bumsted said they’ve had to learn to be patient with selling some of these more obscure titles, but eventually the time comes for them to find a new home.

“One of the great things about physical books is that they can be there for you when you are ready for them.”

This report by The Canadian Press was first published on Sept. 15, 2024.



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Labour Minister praises Air Canada, pilots union for avoiding disruptive strike

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MONTREAL – Canada’s labour minister is praising both Air Canada and the union representing about 5,200 of its pilots for averting a work stoppage that would have disrupted travel for hundreds of thousands of passengers.

Steven MacKinnon’s comments came in a statement shared to social media shortly after Canada’s largest air carrier announced it had reached a tentative labour deal with the Air Line Pilots Association.

MacKinnon thanked both sides and federal mediators, saying the airline and its pilots approached negotiations with “seriousness and a resolve to get a deal.”

The tentative agreement averts a strike or lockout that could have begun as early as Wednesday for Air Canada and Air Canada Rouge, with flight cancellations expected before then.

The airline now says flights will continue as normal while union members vote on the tentative four-year contract.

Air Canada had called on the federal government to intervene in the dispute, but Prime Minister Justin Trudeau said Friday that would only happen if it became clear no negotiated agreement was possible.

This report from The Canadian Press was first published Sept. 15, 2024.

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As plant-based milk becomes more popular, brands look for new ways to compete

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When it comes to plant-based alternatives, Canadians have never had so many options — and nowhere is that choice more abundantly clear than in the milk section of the dairy aisle.

To meet growing demand, companies are investing in new products and technology to keep up with consumer tastes and differentiate themselves from all the other players on the shelf.

“The product mix has just expanded so fast,” said Liza Amlani, co-founder of the Retail Strategy Group.

She said younger generations in particular are driving growth in the plant-based market as they are consuming less dairy and meat.

Commercial sales of dairy milk have been weakening for years, according to research firm Mintel, likely in part because of the rise of plant-based alternatives — even though many Canadians still drink dairy.

The No. 1 reason people opt for plant-based milk is because they see it as healthier than dairy, said Joel Gregoire, Mintel’s associate director for food and drink.

“Plant-based milk, the one thing about it — it’s not new. It’s been around for quite some time. It’s pretty established,” said Gregoire.

Because of that, it serves as an “entry point” for many consumers interested in plant-based alternatives to animal products, he said.

Plant-based milk consumption is expected to continue growing in the coming years, according to Mintel research, with more options available than ever and more consumers opting for a diet that includes both dairy and non-dairy milk.

A 2023 report by Ernst & Young for Protein Industries Canada projected that the plant-based dairy market will reach US$51.3 billion in 2035, at a compound annual growth rate of 9.5 per cent.

Because of this growth opportunity, even well-established dairy or plant-based companies are stepping up their game.

It’s been more than three decades since Saint-Hyacinthe, Que.-based Natura first launched a line of soy beverages. Over the years, the company has rolled out new products to meet rising demand, and earlier this year launched a line of oat beverages that it says are the only ones with a stamp of approval from Celiac Canada.

Competition is tough, said owner and founder Nick Feldman — especially from large American brands, which have the money to ensure their products hit shelves across the country.

Natura has kept growing, though, with a focus on using organic ingredients and localized production from raw materials.

“We’re maybe not appealing to the mass market, but we’re appealing to the natural consumer, to the organic consumer,” Feldman said.

Amlani said brands are increasingly advertising the simplicity of their ingredient lists. She’s also noticing more companies offering different kinds of products, such as coffee creamers.

Companies are also looking to stand out through eye-catching packaging and marketing, added Amlani, and by competing on price.

Besides all the companies competing for shelf space, there are many different kinds of plant-based milk consumers can choose from, such as almond, soy, oat, rice, hazelnut, macadamia, pea, coconut and hemp.

However, one alternative in particular has enjoyed a recent, rapid ascendance in popularity.

“I would say oat is the big up-and-coming product,” said Feldman.

Mintel’s report found the share of Canadians who say they buy oat milk has quadrupled between 2019 and 2023 (though almond is still the most popular).

“There seems to be a very nice marriage of coffee and oat milk,” said Feldman. “The flavour combination is excellent, better than any other non-dairy alternative.”

The beverage’s surge in popularity in cafés is a big part of why it’s ascending so quickly, said Gregoire — its texture and ability to froth makes it a good alternative for lattes and cappuccinos.

It’s also a good example of companies making a strong “use case” for yet another new entrant in a competitive market, he said.

Amid the long-standing brands and new entrants, there’s another — perhaps unexpected — group of players that has been increasingly investing in plant-based milk alternatives: dairy companies.

For example, Danone has owned the Silk and So Delicious brands since an acquisition in 2014, and long-standing U.S. dairy company HP Hood LLC launched Planet Oat in 2018.

Lactalis Canada also recently converted its facility in Sudbury, Ont., to manufacture its new plant-based Enjoy! brand, with beverages made from oats, almonds and hazelnuts.

“As an organization, we obviously follow consumer trends, and have seen the amount of interest in plant-based products, particularly fluid beverages,” said Mark Taylor, president and CEO of Lactalis Canada, whose parent company Lactalis is the largest dairy products company in the world.

The facility was a milk processing plant for six decades, until Lactalis Canada began renovating it in 2022. It now manufactures not only the new brand, but also the company’s existing Sensational Soy brand, and is the company’s first dedicated plant-based facility.

“We’re predominantly a dairy company, and we’ll always predominantly be a dairy company, but we see these products as complementary,” said Taylor.

It makes sense that major dairy companies want to get in on plant-based milk, said Gregoire. The dairy business is large — a “cash cow,” if you will — but not really growing, while plant-based products are seeing a boom.

“If I’m looking for avenues of growth, I don’t want to be left behind,” he said.

Gregoire said there’s a potential for consumers to get confused with so many options, which is why it’s so important for brands to find a way to differentiate themselves, whether it’s with taste, health, or how well the drink froths for a latte.

Competition in a more crowded market is challenging, but Taylor believes it results in better products for consumers.

“It keeps you sharp, and it forces you to be really good at what you’re doing. It drives innovation,” he said.

This report by The Canadian Press was first published Sept. 15, 2024.



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