When governments in many countries ordered schools to shut down in March 2020 because of the pandemic, families with autistic kids felt the stakes were exceptionally high. The parents have had to ensure that their children receive a good education, while also having adequate mental health supports in place. The combination has been quite tiring for most of them.
“The government has given us funding for me to stay home,” says Lisa Tracado, a pharmacy technician from Toronto, Ont,, who had to take some time off to help her autistic daughter, Serena, with homeschooling. “If I wasn’t at home, I don’t think she would have been able to do it by herself.”
Serena, 17, started studying at home on March 16, after the Ontario government ordered local school boards to shut down due to COVID-19.
“We thought it would just be for a few weeks, and then it extended into months,” Lisa says.
Initially, it was hard for the family to adapt to online learning, but they got used to it with time.
“The hardest was time management and her not wanting to do the work,” Lisa says.
She didn’t tell Serena that marks for the 2019-2020 academic year could not be lowered after March 13, under a new COVID-19 policy developed by the Ministry of Education.
“I think that was a mistake on the government’s part,” Lisa says. “Because after that announcement, none of the kids went to class.”
A Ministry of Education spokesperson, Ingrid Anderson, said that students’ health, safety and well-being is their top priority.
“Our aim is for every child – irrespective of ability, geography or socio-economic circumstance – to have a safe and successful school year,” she wrote. “To support students and families in making decisions that work best for them, in-person school attendance is optional in 2020-21.”
She mentioned that on Aug. 13, the ministry issued Policy/Program Memorandum No. 164 that covered all remote learning requirements.
“The PPM [Policy/Program Memorandum] includes guidance on how to support students with special education needs, including autism, for example, by providing additional synchronous learning time, differentiated support and instruction, adhering to IEPs, and providing access to assistive technology,” she said. “Where any challenges arise, educators are expected to work with students and parents to determine workable solutions on an individual basis.”
Mix of in-person and online classes
In September, Serena’s fully-online high school classes changed into a mix of in-person and online courses. Several times per week, Serena attended Bishop Allen Academy in the mornings to study, and then returned home and had her online classes.
Serena always had great support from their school.
“Right now, our [educational] assistance is phenomenal,” Lisa says. “They’ll call her or, they’ll text her or, they’ll write something in the chat box to see if she needs any help.”
Serena does her best to complete each assignment, but Lisa always ensures that her daughter’s mental health does not suffer.
“Whatever she gets done, she gets done,” Lisa says. “If she can’t do it, I’ll send a note to the teacher or the assistant, and we can work something else out.”
So far, the family has never had any problems communicating with the school.
Serena attends a regular school with an integrated classroom. She is in Grade 12 but will not go on to post-secondary just yet. She plans to continue attending school there. In Canada, people with special needs are allowed to stay at school until they are 21.
Lisa mentioned that she was lucky that her daughter was a high schooler and quite independent.
“I can see how difficult it is [with younger kids] because it’s all new, and they need more help,” she says.
Two children in elementary school
Across the Atlantic Ocean, a British family from Reading, experienced many other difficulties.
Together with her husband Kelly, who is also on the spectrum, Hester Grainger had to teach their daughter India, 11, and their son Hudson, 8, who are both autistic.
“The most difficult thing was not knowing if you were providing them with a decent education or if these six months of home learning were going to really impact them,” says Hester, who is a public relations professional, as well as an outspoken advocate for autistic people.
Hester took a serious approach in explaining to her kids why they had to start studying from home without their friends around them. She knew that India and Hudson had a clear distinction between home and school and that it may be hard for them to blur this line.
“Both of my children say that home is their safe place, where they don’t have to think about school anymore. It’s where they can decompress and unwind after the end of a really anxious, stressful day,” Hester says. “So when you then bring homework and school learning into home, it’s kind of like bringing a bully round to the house.”
India and Hudson had different opinions about homeschooling.
Hester mentioned that her daughter always wanted to try homeschooling but, after studying at home for some time, started missing her friends and wanted to return to in-person classes.
“My daughter and I are much more sociable and we like going out,” she says. “So we really missed that.”
In contrast, Hudson quickly became accustomed to homeschooling, particularly to the possibility of studying from his kitchen, and barely leaving the house.
“He kept saying, ‘I’m living my best life!’ because he doesn’t like leaving the house even for something fun,” says Hester laughing.
Flexibility key with autistic students
In March, right after the lockdown began, the family launched their schooling with a routine. They created a timetable. But after the first couple of days, Hester understood that it didn’t work. She saw that her children needed time to decompress, and their mood was changing each day.
As both of her kids have sensory processing disorder — difficulty processing information from one’s senses — a bright light, strong smells and some textures could trigger their senses. Hester changed her approach to be more flexible.
“We wouldn’t necessarily sit down and start work at 9 [a.m.] and then finish it at 3 [p.m.],” she says. “It might be depending on how they were feeling, and reading their mood that day.”
Instead of forcing the kids to read certain books, the family would often watch documentaries about the same topics and discuss them afterwards. Hester also came up with an interesting activity. She organized treasure hunts where the kids would be asked to complete tasks, such as math questions, at different locations.
“They thought it was great because I got to run up and down,” Hester says. “But it was actually really hard work because you are always trying to come up with new ideas to keep them entertained.”
The support from the school was also lacking in some respects, which made it harder for the family during the pandemic.
“Our school was really great at sending back resources, but we only heard from a teacher once in six months,” she says. “There was no feedback.”
Parents feel stranded
Hudson didn’t have any nurture sessions, in which he would talk to somebody to train to form positive relationships with others, throughout the whole six months while he was homeschooling.
Just before the lockdown, Hester qualified for an NCFE CACHS Level 2 certificate in Understanding Autism, a special training program on how to support people with autism. This qualification allowed her to better understand her kids’ needs, but it was still hard for her to manage things.
“I think there’s a huge amount of parents that are just stranded, and we are just expected to get on with it and actually, we’re not professionals,” she says.
In September, when schools in the U.K. opened, India and Hudson went back. But after a couple of weeks, when children in their classes got coronavirus, they returned to homeschooling.
Throughout the whole time of the homeschooling, it was extremely hard for Hester to keep up with all the tasks. In addition to being a mother, she is a public relations expert, coach and freelance writer.
Some days she was completely exhausted.
“My to-do list is insanely long,” she says. “When you have an ASD [Autism Spectrum Disorder] child, you have to advocate for them a lot, and there’s a lot of email into the school and constantly trying to fight to get help and assistance.”
Sometimes, she couldn’t get done everything that she had planned, but she learned how to be optimistic about it.
“If I don’t get something done, it’s not the end of the world, and it can be parked and done again the next day,” Hester says.
One parent needs to be at home
Hester emphasized that for homeschooling autistic children to be successful, one of the parents needs to be with the kids all the time.
The Tracado family from Toronto shares this sentiment. Lisa Tracado says she was lucky to still be able to stay home with Serena.
When her daughter was feeling lonely, Lisa tried to keep her busy with online classes and events organized by Autism Ontario, so that Serena could see her friends, whom she had met before the lockdown. Serena attended online yoga and dance classes as well as different games and fun nights.
“She was so happy when she got to see all of her dance class,” Lisa says.
They’ve had a membership with Autism Ontario since Serena was first diagnosed with autism at three, and their experience has always been positive.
“It’s a relaxed environment because every parent knows what you’re going through,” Lisa says. “So, if a child is having a meltdown, everyone understands, no one’s going to judge.”
Autism Ontario is a charitable organization that supports kids with autism and their families.
According to their latest report, “1 in 66 Canadian children and youth (ages 5-17) have autism.”
“We help families in many different ways,” says Karie Evelyn, Toronto service navigator at Autism Ontario.
In addition to organizing many virtual events for kids and virtual coffee sessions for their parents, Autism Ontario helps families to apply for the Ontario Autism Program, a program that helps children up to the age of 18 who were diagnosed with ASD to receive services and financial supports.
“We help families find service providers, understand the program and what they need to do in terms of keeping receipts,” Evelyn says. “We provide weekly information sessions on the program and how to fill out the forms.”
Hester Grainger felt the same need for a supportive community. In July, together with her husband Kelly, they founded Perfectly Autistic, a non-judgmental support group for autistic people, their parents, and partners. Since the launch, their Facebook community has grown a lot and even became international.
“People find it a useful place for resources, and we’ve also started working with companies about raising awareness and understanding of autism in the workplace,” Hester says.
Homeschooling has been an excellent opportunity for families to spend time with their kids and become closer. Still, both families emphasized the importance of in-person classes and personal interactions that prepare kids with autism for real life.
“It [school] is a place where they learn life skills,” says Hester. “It’s about building resilience.”
Despite all the obstacles that Serena faced in her life, her parents and school set her on her own path. Serena has already decided on her future profession.
“Definitely a singer,” says Serena with a smile.
She loves listening to music and singing along. Serena can listen to five different songs simultaneously and had them all organized in her head. Often, she listens to music during classes or while doing homework, as it helps her to relax.
While Serena was younger, she had many sensory issues, but it became better as she got older. She still flaps her hands, but only when she is nervous or excited. For Serena, music is a way to deal with the sensory needs on her own.
In the fall, Serena was excited when her mother said that she would be able to return to school, even if it was only for two or three times per week, as she could finally see her boyfriend and interact with friends.
She misses everyone and she can’t wait for everything to get back to normal.
“I am very excited for the vaccine,” Serena says.