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

Stock photo
COVID-19 cases reported at Mountain View, Aspengrove schools

Public and independent schools report exposures of virus Feb. 16, Feb. 18-19 respectively

Views of Nanaimo, Newcastle Channel and the Strait of Georgia from the Nanaimo Parkway. (Chris Bush/News Bulletin)
Editorial: We have a say in how our city of 100,000 grows

City of Nanaimo wants to hear from residents as transition from small town to big city continues

Nanaimo RCMP asked the public to help locate Brandon Sheldon, 15, who had been missing since Feb. 16. (Photo submitted)
UPDATE: RCMP report missing Nanaimo teen has been found safe and sound

Brandon Sheldon, 15, of Nanaimo missing since Tuesday

FILE – A COVID-19 vaccine being prepared. (Olivia Sullivan/Sound Publishing)
B.C. seniors 80 years and older to get COVID vaccine details over next 2 weeks: Henry

Province is expanding vaccine workforce as officials ramp up age-based rollout

Nanaimo Yacht Club used a crane to lift six new boat sheds from its parking lot and into the water to take their places in the club’s marina Monday. (Chris Bush/News Bulletin)
New boat sheds hoisted into the water at Nanaimo Yacht Club

Shelters for boats, constructed in Nanaimo Yacht Club parking lot, moved by crane Monday

B.C. health officer Dr. Bonnie Henry and health minister Adrian Dix wore pink shirts to showcase this year’s motto: “Lift each other up.” (Twitter/PinkShirtDay)
PHOTOS: B.C. celebs take a stand against bullying on Pink Shirt Day

‘We need to let young people know they are not alone and they can reach out to others for help’

COVID cases in the Bella Coola Valley have dropped to just four active cases (file photo)
Expanding social circles fuelling North Island COVID-19 spike

Comox Valley COVID spike the result of ‘a series of multiple social gatherings’

Average response times for critical “purple” and “red” calls were between nine and 10 minutes Feb. 19 in Metro Vancouver, with only less critical “yellow” calls receiving an average response time of 45 minutes. The longer than usual delay was due to a combination of factors, BC Emergency Health Services said. (APBC image)
After a night of one-hour waits for ambulances, union goes public with concerns

B.C. Ambulance Service says high-priority calls were still 10 minutes or less

NorKam secondary student Karis Wilson in the outfit that got her sent home from school on Tuesday, Feb. 23, 2021. (Contributed to Kamloops This Week)
B.C. teen in turtleneck, lace-edged dress sent home from school for ‘inappropriate’ outfit

NorKam secondary student Karis Wilson was told the lace on the garment made it look like a slip dress

Vancouver Canucks left wing Antoine Roussel (26) tries to get a shot past Edmonton Oilers goaltender Mike Smith (41) during second period NHL action in Vancouver, Tuesday, Feb. 23, 2021. THE CANADIAN PRESS/Jonathan Hayward
Canucks cough up 3-0 lead, fall 4-3 to visiting Edmonton Oilers

Vancouver falls to 8-13-2 on the NHL season

Jessica McCallum-Miller receives her signed oath of office from city chief administrative officer Heather Avison on Nov. 5, 2018 after being elected to Terrace City Council. McCallum-Miller resigned on Feb. 22, 2021, saying she felt unsupported and unheard by council. (Black Press Media File Photo)
Terrace’s 1st Indigenous councillor resigns citing ‘systemic and internalized racism,’ sexism

McCallum-Miller said in a Facebook post she felt unheard and unsupported by council

Temporary changes to allow for wholesale pricing for the hospitality industry were implemented June 2020 and set to expire March 31.	(Pixabay photo)
Pubs, restaurants to pay wholesale prices on liquor permanently in COVID-recovery

Pre-pandemic, restaurateurs and tourism operators paid full retail price on most liquor purchases

Wade Dyck with Luna, a dog who went missing near the Chasm for 17 days following a rollover on Feb. 5. (Photo submitted).
Dog missing for 17 days through cold snap reunited with owner in northern B.C.

Family ecstatic to have the Pyrenees-Shepherd cross back home.

Most Read