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

Freighter anchored off Kin Beach in Chemainus. (Photo by Don Bodger)
MacGregor to host expert panel for virtual town hall on freighter anchorages issue

Residents can participate through MP’s website or Facebook page Dec. 3

How many residents know about the Mount Sicker ghost? (Rob Kernachan)
Kernachan’s cartoon flashback 2001

Ghostly image hovers on Mount Sicker

Chemainus Communities In Bloom adopt-a-beds are located all around town. This one near the post office is still in pretty good shape, considering the time of the year. (Photo by Don Bodger)
It bears repeating to decorate for the holidays

Spray paint pine cones and arrange in a bowl for a coffee table centre

Pnina Benyamini strikes a yoga pose. (Photo submitted)
Devoted citizens worthy of praise

Valued community members will be missed

Rainforest Arts gallery manager Stephanie Allesia. (Photo by Craig Spence)
Campaign underway at Rainforest Arts to benefit Cowichan Women Against Violence

Everyone donating essential items or cash eligible for a draw for artist’s works

B.C. Health Minister Adrian Dix and provincial health officer Dr. Bonnie Henry update the COVID-19 situation at the B.C. legislature, Nov. 23, 2020. (B.C. government)
B.C. sets another COVID-19 record with 887 new cases

Another 13 deaths, ties the highest three days ago

Lake Cowichan’s Oliver Finlayson, second from left, and his family — including grandma Marnie Mattice, sister Avery, mom Amie Mattice and dad Blair Finlayson — were all smiles on Nov. 16 when their pool arrived, thanks to lots of fundraising and the generosity of the Cowichan Lake community. (Kevin Rothbauer/Citizen)
Cowichan Lake community comes together to help family get vital pool

Oliver Finlayson, 9, has Duchenne muscular dystrophy and hydrotherapy is a big help

Penny Hart is emotional outside the Saanich Police Department as she pleads for helpt to find her son Sean Hart last seen Nov. 6 at a health institution in Saanich. (Devon Bidal/News Staff)
VIDEO: Mother of missing Saanich man begs public to help find her son

Sean Hart last seen leaving Saanich mental health facility Nov. 6

Alexandre Bissonnette, who pleaded guilty to a mass shooting at a Quebec City mosque, arrives at the courthouse in Quebec City on February 21, 2017. THE CANADIAN PRESS/Mathieu Belanger - POOL
Court strikes down consecutive life sentences; mosque shooter has prison term cut

The decision was appealed by both the defence and the Crown

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

Join Black Press Media and Do Some Good
Join Black Press Media and Do Some Good

Pay it Forward program supports local businesses in their community giving

Gold medallists in the ice dance, free dance figure skating Tessa Virtue and Scott Moir, of Canada, pose during their medals ceremony at the 2018 Winter Olympics in Pyeongchang, South Korea, Tuesday, Feb. 20, 2018. THE CANADIAN PRESS/AP-Charlie Riedel
Olympic champions Virtue, Moir and Tewksbury among 114 Order of Canada inductees

Moir and Virtue catapulted to national stardom with their gold-medal performances at the Winter Olympics in 2018

Shoppers line up in front of a shop on Montreal’s Saint-Catherine Street in search of Black Friday deals in Montreal, Friday, Nov. 27, 2020. THE CANADIAN PRESS/Paul Chiasson
Black Friday shopping in a pandemic: COVID-19 closes some stores, sales move online

Eric Morris, head of retail at Google Canada, says e-commerce in Canada has doubled during the pandemic.

School District 27 announced the first confirmed case of COVID-19 this week (Nov. 23) at Lake City Secondary School Williams Lake campus. (Angie Mindus photo - Williams Lake Tribune)
Entire gym class at northern B.C. high school isolating after confirmed COVID case

Contact tracing by Interior Health led to the quarantine

Most Read