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

Get local stories you won't find anywhere else right to your inbox.
Sign up here

Just Posted

Vanguard Secondary School is set to receive $3.8 million in seismic upgrades. The upgrades are scheduled to be complete by March 2023. (Joanne Abshire/Special to Langley Advance Times)
Langley school to receive $3.8 million seismic upgrade

Project scheduled to be completed March 2023

Vancouver Giants celebrated a Justin Sourdif goal Saturday night in Kamloops. Giants dropped a 3-1 decision to Kamloops, a game that clinched the 2020-21 B.C. Division banner for the Blazers. (Allen Douglas/special to Langley Advance Times)
VIDEO: Vancouver Giants drop 3-1 decision to Kamloops

Third-period rally should have come sooner: coach

James Kennedy Elementary (undated file)
COVID cases reported at three more Langley schools

James Kennedy Elementary, Simonds Elementary/U-Connect and Langley Secondary

Monica Newman has been part of the Langley Walk for more than 40 years, both as a participant and more recently as a volunteer, collecting badges for each year. (Langley Advance Times files)
59th annual Langley Walk goes virtual again

For the second year running, the historic community event has had to morph due to COVID

Police tape is shown in Toronto Tuesday, May 2, 2017. Statistics Canada says the country's crime rate ticked up again in 2018, for a fourth year in a row, though it was still lower than it was a decade ago. THE CANADIAN PRESS/Graeme Roy
CRIME STOPPERS: ‘Most wanted’ for the week of May 9

Crime Stoppers’ weekly list based on information provided by police investigators

(The Canadian Press)
Trudeau won’t say whether Canada supports patent waiver for COVID-19 vaccines

‘Canada is at the table to help find a solution’

Pieces of nephrite jade are shown at a mine site in northwestern B.C. in July 2019. THE CANADIAN PRESS/HO-Tahltan Central Government MANDATORY CREDIT
Indigenous nation opposes jade mining in northwestern B.C.

B.C.’s Mines Act requires operators to prepare a plan to protect cultural heritage resources

Police tape is shown in Toronto Tuesday, May 2, 2017. Statistics Canada says the country’s crime rate ticked up again in 2018, for a fourth year in a row, though it was still lower than it was a decade ago. THE CANADIAN PRESS/Graeme Roy
IHIT investigating after man killed in Burnaby shooting

Police looking for more information on fatal shooting

Cannabis bought in British Columbia (Ashley Wadhwani/Black Press Media)
Is it time to start thinking about greener ways to package cannabis?

Packaging suppliers are still figuring eco-friendly and affordable packaging options that fit the mandates of Cannabis Regulations

The body of Brenda Ware, 35, was found along Highway 93 in Kootenay National Park on Thursday, May 6, 2021. (RCMP handout)
RCMP ask for tips after woman’s body found in Kootenay National Park

Brenda Ware was found along Highway 93 in the park, 54 kilometres north of the town of Radium

People pass the red hearts on the COVID-19 Memorial Wall mourning those who have died, opposite the Houses of Parliament on the Embankment in London, Wednesday, April 7, 2021. On May 3, the British government announced that only one person had died of COVID-19 in the previous 24 hours. THE CANADIAN PRESS/AP-Kirsty Wigglesworth
For a view of a COVID-19 future, Canadians should look across the pond

Britain, like Canada, is one of the only countries in the world to delay second doses for several months

Edmonton Oilers’ Connor McDavid (97) celebrates his 100th point this season with Leon Draisaitl (29) against the Vancouver Canucks during second period NHL action in Edmonton on Saturday, May 8, 2021.THE CANADIAN PRESS/Jason Franson
Edmonton superstar McDavid hits 100-point mark as Oilers edge Canucks 4-3

NHL scoring leader needs just 53 games to reach century mark

Most Read