Earlier this week, researchers at Wilfrid Laurier University released a scathing report on the support families of autistic children have received during the pandemic.
In a report timed for World Autism Awareness Day on April 2, it details how the pandemic has exacerbated issues families of autistic children have been facing for years.
“Autistic children with high support needs were unable to access the therapy they needed, as the set funding allotments over this period were simply not enough for them,” said Janet McLaughlin, associate professor in Laurier’s Department of Community Health and co-director of the Laurier Autism Research Consortium (LARC).
According to researchers, 53 per cent of caregivers felt that funding received from the Ontario Autism Program (OAP) met their child’s therapy and support needs “to a low extent or not at all,” while 47 per cent didn’t receive even a single hour of OAP-funded therapy.
Some of the stressors caregivers faced pre-pandemic, such as therapy navigation and affordability were significantly compounded by the challenges brought on by the pandemic.
Over the study period, challenges emerged, including isolation and further service loss due to COVID-19.
“Between the pandemic and autism services upheaval, many caregivers are burned out,” McLaughlin said.
According to the Laurier professor, parents are essentially working multiple full-time jobs.They are not only parents and income earners, but are also navigators and advocates for their children.
She calls for better funded systems to take the burden off caregivers and to cut down wait times on important programs for autistic children and their families.
Long wait lists to enter programs and services are nothing new for the autistic community.
According to Autism Ontario, “Ontario families looking for an autism diagnosis and subsequent services, on average can expect to spend upwards of a year on a wait list. Even after a diagnosis, families face yet another wait list to access the services from various providers, which can range from three months to two years.”
Extraordinarily long wait lists are another issue highlighted by the report that has worsened due to the pandemic and lack of funding for these services.
KidsAbility, an organization in Cambridge that supports children with special needs, including many that can support children with autism, says they are seeing many of the same issues outlined in the report.
“Unfortunately, most organizations offering services to children with Autism have wait lists. KidsAbility is no different,” said Natalie Robinson, director of client experience at KidsAbility.
Although they might not be able to help everyone right away they do offer services that can be accessed even if you are on the waiting list.
“We offer a range of Foundational Family Supports; these supports are available without a cost to families in the Ontario Autism Program at any time, including those on the wait list,” said Robinson
Their ‘Ask the Applied Behavior Analysis Team’ program, can answer questions families might have and get some support from a professional before they are accepted into a program.
This is a small step to help alleviate the pressure put on families that are stuck on a waiting list.
Another issue caused by this pandemic is related to autistic children and their experiences in the educational system.
“Many Ontario primary and high school students with an autism diagnosis have struggled to remain consistently engaged in the education system during the COVID-19 pandemic,” said Margaret Schneider, associate professor in Laurier’s Department of Kinesiology and Physical Education.
KidsAbility has launched their ‘Entry to School' program at all of their sites across the region.
“This program helps students with autism, aged 3-6, transition to school for the first time. The six-month program is the first of its kind at KidsAbility and is offered to families through invitation via the Ontario Autism Program,” Robinson said.
The report says the pandemic has put a magnifying glass on problems families of autistic children have been faced with for years.
The full report can be read here.
