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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

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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Alberta unveils new municipal election and political party rules |

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Alberta’s Municipal Affairs Minister Ric McIver has unveiled new municipal election and political party rules. The rules make sweeping changes, including regulations new municipal political parties in Edmonton and Calgary will have to follow ahead of next year’s municipal election. The government says these rules will make local elections more transparent. (Oct. 18, 2024)



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One Direction was the internet’s first boy band, and Liam Payne its grounding force

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Liam Payne’s voice is the first one heard in the culture-shifting boy band One Direction’s debut single: “What Makes You Beautiful” launches into a bouncy guitar riff, a cheeky and borderline gratuitous cowbell and then, Payne.

“You’re insecure, don’t know what for / You’re turning heads when you walk through the door,” he sings, in a few words assuring a cross-section of generations that he’s got your back, girl, and you should like yourself a little bit more.

Payne, who died Wednesday after falling from a hotel balcony in Buenos Aires, Argentina, at just 31, was also the last solo voice on the band’s final single, “History” — effectively opening and closing the monolithic run of one of the biggest boy bands of all time.

While the exact circumstances of his death remain unclear — Buenos Aires police said in a statement that Payne “had jumped from the balcony of his room,” although they didn’t offer details on how they established that or whether it was intentional — in life, Payne was a critical part of the internet’s first boy band, one that secured an indelible place in the hearts of millennial and Gen Z fans.

How One Direction became the internet’s first boy band

Before One Direction became One Direction, its members auditioned for the U.K.’s “The X Factor” separately. The judges decided to put five promising, but not yet excellent, boys into a group. They were Harry Styles, Niall Horan, Louis Tomlinson, Zayn Malik and Payne, who together finished third in the 2010 competition.

As Rolling Stone contributing editor Rob Sheffield points out, it was an “unprecedented” way for a boy band to get their start.

“They were sort of assigned to be together. And you don’t expect longevity out of that situation. Honestly, you don’t even expect one good pop record to come out of that situation,” he says. And yet, not only did it work, but One Direction essentially created “a new template for pop stardom, really.”

The show allowed Day 1 fans to follow their career before their official 2011 launch with “What Makes You Beautiful.” Nascent fans could use rising social media platforms like Twitter and Tumblr to find community, draw attention to the group and, in the earliest days, speak directly to the members.

“I honestly made a Twitter so that I could keep up with One Direction, and that’s how I made so many different friends,” says Gabrielle Kopera, 28, a fan from California who remembers the band hosting livestreams and chats. “Sometimes they would say something back and it was so much fun. I feel like that fan interaction doesn’t even happen anymore.”

That feeling of accessibility reinforced the group’s personality and relationship with fans, says Maura Johnston, a freelance music writer and Boston College adjunct instructor.

“The fact that they came up on this British TV show and they became this worldwide phenomenon, I don’t think that would have happened as acutely and as quickly and as immersive without social media, without Twitter or without people being able to mobilize around the globe,” she says.

One Direction and their fans

Millennial and Gen Z audiences practically grew up with One Direction, but the band was truly ubiquitous. That, Johnston says, is at least partially attributable to arriving in a very different media environment from today’s.

“It was a lot more focused,” she says of the early 2010s. “Algorithmic sorting of stuff hadn’t really taken hold. So, there was this broader, mass approach. … They were one of the last gasps of that mass phenomenon, that anyone of any age, even if they weren’t a fan, had to take notice to.”

But it takes more than omnipresence to cultivate a loyal fanbase. And there were myriad reasons why listeners were attracted to One Direction.

“They were five very different musical personalities, along with five very different personalities,” says Sheffield.

They broke the rules associated with traditional boy bands, too: “They co-wrote many of their songs. They didn’t do, you know, corny, choreographed steps on stage,” he said.

After the news of Payne’s death, Kopera says she “got so many messages from people I haven’t talked to in years reaching out because I think everyone kind of realized that it does feel like we just lost a family member.”

That sentiment was mirrored in the masses of fans who gathered Wednesday outside Buenos Aires’ Casa Sur Hotel, feeding a burgeoning makeshift memorial of flowers, candles and notes as police stood guard.

“I’ve always loved One Direction since I was little,” said Juana Relh, 18, outside Payne’s hotel. “To see that he died and that there will never be another reunion of the boys is unbelievable, it kills me.”

Liam Payne’s place in the band, and its legacy

Payne was a “brooding” older brother-type in One Direction, says Johnston. He also co-wrote many songs, especially in their later career — like the Fleetwood Mac-channeling “What A Feeling” and “Fireproof.”

“He was this grounding force in the band,” Johnston says.

In an Instagram tribute, Tomlinson called Payne “the most vital part of One Direction.”

“His experience from a young age, his perfect pitch, his stage presence, his gift for writing. The list goes on. Thank you for shaping us Liam,” he wrote.

“I always remember that he was the responsible and the sensible one of the group, and I feel like he wore his heart on his sleeve,” Kopera says.

Payne had recently been vocal about struggling with alcoholism, posting a YouTube video in July 2023 where he said he had been sober for six months after receiving treatment. Buenos Aires police said they found clonazepam — a central nervous system depressant — and other over-the-counter drugs in Payne’s hotel room, along with a whiskey bottle in the courtyard where he was found.

“Looking at what happened to Liam, it just makes you feel even more sad, that it just feels like he needed help,” Kopera says. “And it’s so scary to think about how the entertainment industry can just, like, eat up artists.”

After One Direction disbanded in 2016, Payne’s solo career — a single R&B-pop album in 2019, “LP1,” and a number of singles here and there — never took off the same way as some of his bandmates. He was “the least successful,” Sheffield says. “It’s safe to say that on the terms that he was going for, he didn’t really find what he wanted to do.”

“It’s hard, transitioning from being a boy bander to be a pop star,” Johnston says.

At Payne’s solo shows, Sheffield explains, “He would show a little montage of One Direction performing, which is the kind of thing you don’t do when you’re starting out as a solo artist. But fans took that in the spirit it was offered, which is a very generous statement that he’s like, ‘Yep, you’re here because of this history that we share, and I’m here because of that same history.’”

Despite Payne’s struggles and the tragedy of his death, Kopera is confident “his legacy is going to always point back to One Direction.”

For fans, the same is true.

“When I look back on One Direction, I’m like, that was my girlhood. One Direction was the soundtrack to growing up, and I’m so thankful for it,” she says. “They really were just a group of normal boys.”

____

AP journalist Brooke Lefferts contributed to this report.



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Fledgling Northern Soccer League expected to announce first player signings soon

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The Northern Super League will likely start rolling out player signing announcements next week but its full schedule isn’t expected until early next year, according to co-founder Diana Matheson.

The former Canadian international said the fledgling six-team women’s pro league, which is scheduled to kick off in April, is having to wait on others for the full schedule although an update on the start and end of the season plus transfer window information is expected soon.

“The reality is we share venues with other teams. We’re either second, third or fourth tenant in some places,” Matheson explained.

The new league has to wait for the CFL to sort out its schedule and broadcast information, so the full NSL schedule likely won’t come out until late January or early February.

“It’s a starting point. We’ll get better,” said Matheson,

In some cases, as in the PWHL, teams may also play several games outside their primary venue, which adds to the complexity.

Matheson said teams have already started signing players, with news to follow.

“Player announcements will just keep coming until February-March,” she said. “We operate, as you know, in a global market. All the players out there are under contract right now so there’ll probably be some incredible Canadian stories signed early that you’ll start to learn about.

“And then the reality is the clubs actually get more leverage over players and agents the closer we get to the season so there’ll be some patience of clubs to sign players too, to sign the strongest possible rosters across the league from Day 1, the kickoff in April. And then we’re in market and we’re competing against the rest of the world.”

Matheson said there will be no requirement in the new league to play a certain number of young players, at least in its early stages. The 20- to 25-woman team rosters will be limited to seven internationals.

Matheson is headed to Spain next to help with the Canadian women’s team.

Sixth-ranked Canada will be coached by committee for the Oct. 25 friendly with No. 3 Spain in Almendralejo, Spain. With coach Bev Priestman suspended for a year in the wake of the Olympic drone-spying scandal, the coaching will be handled by returning assistant coaches Andy Spence, Jen Herst and Neil Wood.

Katie Collar, head coach of Whitecap FC Girls Elite, will serve as interim technical assistant and Maryse Bard-Martel as interim performance analyst.

The 40-year-old Matheson, who won 206 caps for Canada in a senior career that stretched from 2003 to 2020, is serving in an interim team support role, “providing leadership and serving as a resource for both staff and players.”

Matheson said it is likely a “one-off … as someone who has lived the program on the players’ side.”

But she said it was “an honour” to be part of the Canadian setup — and also a chance to answer any questions from players about the new league.

The NSL league will kick off with teams in Vancouver, Calgary, Toronto, Montreal. Ottawa and Halifax.

Matheson hopes veteran midfielder Desiree Scott, who is returning at the end of the NWSL season, can play a role with the new Canadian women’s league — hopefully when her native Winnipeg joins the circuit.

This report by The Canadian Press was first published Oct. 18, 2024

The Canadian Press. All rights reserved.



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