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

Sahtlam Volunteer Firefighters Association has stepped up, in spite of COVID, for a number of charities. (Submitted)
Sahtlam firefighters step up

Sahtlam Volunteer Firefighters Association has a long history of supporting charities

A mobile home fire prompted a quick response from firefighters Saturday around 3:30 p.m. (Kevin Rothbauer/Citizen)
Mobile home up in flames at Duncan RV Park

One patient burned, EHS on scene

Phaecelia used as a cover crop attracts bees and provides them with high quality nectar. (Mary Lowther photo)
Mary Lowther column: Cover crops keep soil healthy and productive

We don’t harvest a cover crop and instead dig the tops under when they’re immature and soft

Sarah Simpson
Sarah Simpson Column: Home is where you know your neighbours

My mom has lived at that address for 43 years.

The James C Richardson Pipe Band marches in a Remembrance Day parade on Nov. 11, 2019 in Chilliwack. Wednesday, March 10 is International Bagpipe Day. (Jenna Hauck/ Chilliwack Progress file)
Unofficial holidays: Here’s what people are celebrating for the week of March 7 to 13

International Bagpipe Day, Wash Your Nose Day and Kidney Day are all coming up this week

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

Victoria man Brett Andersen is asking for people’s help to secure him one of eight free tickets to the moon. (Screenshot/@brettandersen Instagram)
Victoria man wants your help securing a free ticket to the moon

Japanese billionaire offering eight people a trip to the moon

The Conservation Officers Service is warning aquarium users after invasive and potentially destructive mussels were found in moss balls from a pet store. (BC Conservation Officers Service/Facebook)
Aquarium users in B.C. warned after invasive mussels found at pet store

Conservation officers were told the mussels were found in a moss ball from a Terrace pet store.

Hockey hall-of-fame legend Wayne Gretzky, right, watches the casket of his father, Walter Gretzky, as it is carried from the church during a funeral service in Brantford, Ont., Saturday, March 6, 2021. HE CANADIAN PRESS/Nathan Denette
Walter Gretzky remembered as a man with a ‘heart of gold’ at funeral

The famous hockey father died Thursday at age 82 after battling Parkinson’s disease

Donald Alan Sweet was once an all star CFL kicker who played for the Montreal Alouettes and Montreal Concordes over a 13-year career. Photo courtesy of Mission RCMP.
Ex-B.C. teacher who was CFL kicker charged with assault, sexual crimes against former students

Donald Sweet taught in Mission School District for 10 years, investigators seek further witnesses

(Black Press Media files)
Medicine gardens help Victoria’s Indigenous kids in care stay culturally connected

Traditional plants brought to the homes of Indigenous kids amid the COVID-19 pandemic

During a press event on March 6, Const. Alex Berube, media relations officer for the West Shore RCMP, addressed a deadly shooting that occurred in Metchosin the night before. (Devon Bidal/News Staff)
VIDEO: One man shot dead in ‘targeted incident’ in Metchosin

Highway 14 reopens following multi-hour closure for investigation

Most Read