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

B.C. researchers are asking for the public’s help in monitoring the bat population. (Cathy Koot photo)
Semiahmoo Peninsula residents asked to monitor bat activity

Researchers keeping eye on spread of white-nose syndrome

Police tape is shown in Toronto Tuesday, May 2, 2017. (Graeme Roy/The Canadian Press)
CRIME STOPPERS: ‘Most wanted’ for the week of Feb. 28

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

(Black Press - file photo)
WEATHER: Enjoy the sun today, prepare for a week of rain

Clouds and rain to arrive by evening, Environment Canada forecasts

RCMP are looking for “an unknown man who wrapped his arms around” a female youth in Clayton Feb. 26. (Black Press file photo)
Youth assaulted by unknown man in Cloverdale

Mounties looking for ‘tall and thin’ Caucasian man in his 40’s with short dark brown hair

Framed photos of Travis Selje and other items fill the top of a dresser in his bedroom. (Photo: Tom Zillich)
Crown says defence case epilepsy caused fatal Surrey crash fails on balance of probabilities

‘She very clearly had some form of control over that vehicle,’ Crown argues

Abbotsford’s Kris Collins turned to TikTok out of boredom when the provincial COVID-19 lockdown began in March 2020. She now has over 23 million followers on the video app. Photo: Submitted
Internet famous: Abbotsford’s Kris Collins is a TikTok comedy queen

Collins has found surprise stardom alone with a phone

B.C. Supreme Court in Vancouver on Tuesday December 11, 2018. THE CANADIAN PRESS/Darryl Dyck
B.C.’s compromise on in-person worship at three churches called ‘absolutely unacceptable’

Would allow outdoor services of 25 or less by Langley, Abbotsford and Chilliwack churches

Baldy Mountain Resort was shut down on Saturday after a fatal workplace accident. (Baldy Mountain picture)
Alina Durham, mother of Shaelene Bell, lights candles on behalf of Bell’s two sons during a vigil on Saturday, Feb. 27, 2021. (Jenna Hauck/ Chilliwack Progress)
VIDEO and PHOTOS: Candlelight vigil for missing Chilliwack woman sends message of hope

Small group of family, friends gathered to shine light for 23-year-old mother Shaelene Bell

Jasmine and Gwen Donaldson are part of the CAT team working to reduce stigma for marginalized groups in Campbell River. Photo by Marc Kitteringham, Campbell River Mirror
Jasmine’s story: Stigma can be the hardest hurdle for those overcoming addiction

Recovering B.C. addict says welcome, connection and community key for rebuilding after drug habit

A Vancouver restaurant owner was found guilty of violating B.C.’s Human Rights Code by discriminating against customers on the basis of their race. (Pixabay)
Vancouver restaurant owner ordered to pay $4,000 to customers after racist remark

Referring to patrons as ‘you Arabs’ constitutes discrimination under B.C.’s Human Rights Code, ruling deems

Approximate location of the vehicle incident. (Google Maps)
Vehicle incident blocking Coquihalla traffic in both directions

Both directions of traffic stopped due to vehicle incident

Judith Uwamahoro is Black, approximately 4’7″ tall, 80 pounds and has short black hair and brown eyes. (Surrey RCMP handout)
UPDATED: Lower Mainland 9-year-old located after police make public plea

Judith Uwamahoro went missing Friday at around 4 p.m. in Surrey

Five-year-old Nancy Murphy wears a full mask and face shield as she waits in line for her kindergarten class to enter school during the COVID-19 pandemic on Tuesday, September 15, 2020. THE CANADIAN PRESS/Nathan Denette
Variant of concern linked to COVID-19 outbreak at three Surrey schools

Cases appear to be linked to community transmissions, but schools will remain open

Most Read