A man and his son are silhouetted against the sky as they watch the sunset from a park in Kansas City, Mo., Friday, June 26, 2020. A new survey shows caregivers for kids with autism, report their children’s anxiety, routines and sleep quality have worsened in the fallout of the COVID-19 pandemic, along with parents’ own wellbeing. THE CANADIAN PRESS/AP, Charlie Riedel

A man and his son are silhouetted against the sky as they watch the sunset from a park in Kansas City, Mo., Friday, June 26, 2020. A new survey shows caregivers for kids with autism, report their children’s anxiety, routines and sleep quality have worsened in the fallout of the COVID-19 pandemic, along with parents’ own wellbeing. THE CANADIAN PRESS/AP, Charlie Riedel

B.C. kids with autism and their caregivers lack support during pandemic: survey

Experts say a change in attitude, not just more funds, is needed

The fallout from the COVID-19 pandemic has cut off supports for children with autism and their caregivers, leaving them feeling abandoned by the British Columbia government, advocates and researchers say.

The neglect of neurodiverse kids with special needs has been “so overwhelming that something fairly radical has to be done by this new government if families are going to rebuild any trust,” said Deborah Pugh, the executive director of ACT — Autism Community Training.

Pugh said she was “stonewalled” by provincial officials in the New Democrats’ last minority government and she’s calling on Premier John Horgan to help now that he has a newly elected majority.

“It’s not just a matter of throwing money at this,” Pugh said in an interview. “We need a change in the whole attitude towards children with special needs and their families in the province.”

A representative for the Ministry of Children and Family Development said in an email the province is committed to providing people with the services they count on, and to improving access to supports for children and youth with special needs.

Pugh’s organization partnered with the autism and developmental disorders lab at Simon Fraser University for a survey of 238 caregivers of children with autism in B.C. asking about their experiences from March to June.

The survey showed the majority of caregivers reported their child’s anxiety, tantrums, routines and sleep quality had worsened, while parents’ own well-being declined and provincial supports in response to COVID-19 were insufficient to meet their needs.

Grace Iarocci, a psychology professor who directs the university’s autism lab, said caregivers were already struggling with lack of supports and higher rates of depression before COVID-19 hit.

The survey also showed 37 per cent of caregivers were concerned their child might physically harm another family member, while nine per cent had considered putting their child into government care.

Giving up your child is a last resort and the results suggest parents are under such pressure they feel they can’t cope, said Iarocci.

“I don’t think governments want to see families giving up the care of their children,” she said, noting that would add financial costs for the province.

READ MORE: Pandemic poses serious problems for children with autism, say Victoria parents

The pandemic has meant high-need children and youth who struggle with communication have had “everything in their lives pulled out from underneath them,” said Pugh, from specialized supports at school to respite care to therapists who are no longer visiting families and children at home to provide one-on-one care.

“They can’t understand why they can’t go to their favourite toy store, why they can’t go swimming, why they can’t go to school, why their favourite respite provider — they can no longer see them,” she said.

Some service providers are working remotely, she said, but that’s not a viable option for many kids who find it difficult to connect online.

The families of kids diagnosed with autism under the age of six may receive up to $22,000 each year to pay for certain supports and youth aged six to 18 are eligible for up to $6,000.

But Pugh said families won’t see all of that money since many services simply aren’t accessible during the pandemic and it typically doesn’t carry forward into the next year.

The province offered caregivers whose child was turning seven or 19 and transitioning from one level of funding to another in the wake of the pandemic three extra months to use unspent money.

B.C. has also increased the amount of funding that may be used to pay for equipment and family counselling, the Ministry of Children and Family Development said, and many families weren’t using fully utilizing their funding before the pandemic.

One in 66 children has been diagnosed with autism in Canada and 18,000 are receiving funding after being diagnosed in B.C., said Pugh.

She and Iarocci are urging the province to allow for more flexibility in its autism funding program, letting families to use the money over a longer period of time as the pandemic wears on, and to expand the range of support services where the money can be used as caregivers themselves step into therapy roles.

In Langford, B.C., Vanessa Taylor said she’s on leave from her job while caring for her eight-year-old son who has autism, as well as her kindergarten-age daughter who is set to be assessed next year.

Taylor said she struggled to secure specialists to work with her son both at his school and in the community before the pandemic, which has further dried up their options for support services.

“You’re left with families that are dealing with compassion fatigue, they’re dealing with having to juggle everything, like they’re having to be the speech therapist, the occupational therapist, the teacher.”

This story was produced with the financial assistance of the Facebook and Canadian Press News Fellowship.

Brenna Owen, The Canadian Press


Like us on Facebook and follow us on Twitter.

Want to support local journalism during the pandemic? Make a donation here.

Coronavirus

Just Posted

A bathtub kitchen garden is part of the lineup for this year’s Teeny Tiny Garden Tour to benefit Victoria Hospice. (Screenshot/Teeny Tiny Garden Tour)
Virtual garden tour for Victoria Hospice features trio of back yards

Online tour is free; calendar purchase and donation options raise money for the cause

Norman Mogensen sets up strings for his beans in his plot in the Oak Bay community gardens. (Christine van Reeuwyk/News Staff)
Oak Bay gardener spends decades cultivating, improving daddy’s beans

85-year-old vegan part of the community gardens scene

Diana Durrand and Arlene Nesbitt celebrate the new artist space in 2014. Gage Gallery moves this summer from Oak Bay to Bastion Square in Victoria. (Black Press Media file photo)
Gage Gallery moving to Bastion Square

Vivid Connections, a showcase by Laura Feeleus and Elizabeth Carefoot, opens new venue June 29

Al Kohut, owner of the new photographers GALLERY, checks out Looking Back by David Bradt. The photo printed on canvas is among 50 images featured in the Birds on the Wild Side exhibition showing until July 3. (Wolf Depner/News Staff)
Photo gallery in Sidney plucks out top bird photos

Birds on the Wild Side show running at the new photographers GALLERY until July 3

The Town of Sidney supports efforts to rename Reay Creek to KELSET, its traditional SENCOTEN name. (Black Press Media file photo)
Town of Sidney signs off on Reay Creek name change to KELSET

Name change does not affect surrounding parkland, but public supports doing so

Marco Mendicino, Minister of Immigration, Refugees and Citizenship during a press conference in Ottawa on Thursday, May 13, 2021. THE CANADIAN PRESS/Sean Kilpatrick
Canada to welcome 45,000 refugees this year, says immigration minister

Canada plans to increase persons admitted from 23,500 to 45,000 and expedite permanent residency applications

This undated file photo provided by Ernie Carswell & Partners shows the home featured in the opening and closing scenes of The Brady Bunch in Los Angeles. Do you know the occupation of Mike Brady, the father in this show about a blended family? (Anthony Barcelo/Ernie Carswell & Partners via AP, File)
QUIZ: A celebration of dad on Father’s Day

How much do you know about famous fathers?

Cpl. Scott MacLeod and Police Service Dog Jago. Jago was killed in the line of duty on Thursday, June 17. (RCMP)
Abbotsford police, RCMP grieve 4-year-old service dog killed in line of duty

Jago killed by armed suspect during ‘high-risk’ incident in Alberta

Patrick O’Brien, a 75-year-old fisherman, went missing near Port Angeles Thursday evening. (Courtesy of U.S. Coast Guard)
Search for lost fisherman near Victoria suspended, U.S. Coast Guard says

The 75-year-old man was reported missing Thursday evening

Barbara Violo, pharmacist and owner of The Junction Chemist Pharmacy, draws up a dose behind vials of both Pfizer-BioNTech and Oxford-AstraZeneca COVID-19 vaccines on the counter, in Toronto, Friday, June 18, 2021. An independent vaccine tracker website founded by a University of Saskatchewan student says just over 20 per cent of eligible Canadians — those 12 years old and above — are now fully vaccinated. THE CANADIAN PRESS/Nathan Denette
At least 20% of eligible Canadians fully vaccinated, 75% with one dose: data

Earlier projections for reopening at this milestone didn’t include Delta variant

Emily Steele holds up a collage of her son, 16-year-old Elijah-Iain Beauregard who was stabbed and killed in June 2019, outside of Kelowna Law Courts on June 18. (Aaron Hemens/Capital News)
Kelowna woman who fatally stabbed teen facing up to 1.5 years of jail time

Her jail sentence would be followed by an additional one to 1.5 years of supervision

The George Road wildfire near Lytton, B.C., has grown to 250 hectares. (BC Wildfire Service)
B.C. drone sighting halts helicopters fighting 250 hectares of wildfire

‘If a drone collides with firefighting aircraft the consequences could be deadly,’ says BC Wildfire Service

A dose of the Pfizer-BioNTech COVID-19 vaccine is pictured at a vaccination site in Vancouver Thursday, March 11, 2021. THE CANADIAN PRESS/Jonathan Hayward
NACI advice to mix vaccines gets varied reaction from AstraZeneca double-dosers

NACI recommends an mRNA vaccine for all Canadians receiving a second dose of a COVID-19 vaccine

A aerial view shows the debris going into Quesnel Lake caused by a tailings pond breach near the town of Likely, B.C., Tuesday, Aug. 5, 2014. THE CANADIAN PRESS/Jonathan Hayward
Updated tailings code after Mount Polley an improvement: B.C. mines auditor

British Columbia’s chief auditor of mines has found changes to the province’s requirements for tailings storage facilities

Most Read