THUNDER BAY - Krista Smith and her son Conor’s world's have been turned upside down. A solid routine based on structure has disappeared, and for Conor, who was diagnosed with autism, no longer having that routine or trips to the park or in-person therapy sessions has resulted in a heightened state of sensory seeking and outbursts.
“It’s been very difficult for him,” Smith said. “He doesn’t understand why things are different, and that is true of a lot of young kids, but kids with autism, they thrive on routine, structure, they need it. And to have that pulled away, it’s really difficult for families.”
Social distancing, stay at home advice, and school closures have been challenging for families across the province, but for children with autism, the COVID-19 pandemic has left many families in survival mode as they try to find new ways of coping, though some are feeling left behind.
Conor was receiving therapy two days a week and going to school three days a week and that has now been reduced to nothing.
“He had a great routine, consistency, structure in his day,” Smith said. “Now all of the sudden it’s nothing.”
While schools have transitioned to online learning, switching to the virtual world for some children with autism isn’t such an easy switch.
Smith said virtual workshops are being offered by Children and Community Resources, but not only are they not available to everyone, it can be challenging to get children with autism, who benefit from in-person interaction, to focus in front of a screen.
“The communities that don’t have access to reliable internet, they don’t have it,” she said. “The only problem with that is that parents are either working at home or caregiving to their child or their other children. The timing of these workshops throughout the day, daytime hours, it doesn’t work for people.”
Conor will be starting with a behavioural therapist online next week for 15 minutes per session a couple times a week. But Smith said it will be difficult getting him to focus for that long in front of a screen, but she thinks seeing a familiar face will help.
Liz Hathazi, director with Creative Therapy Associates, said online therapy can be challenging for children with autism and therapists.
“Obviously it is difficult and it’s not ideal because some of the kids don’t have the attention to be in front of a screen,” she said. “It’s been challenging. Basically services were cut off. It seems like parents wanted that initial period to adjust because schedules and staying on schedule is a big thing for these kids. They have a hard time with transition and change.”
Hathazi said therapists have been undergoing training to deliver services online to help children with autism.
“I think people are trying to do their best with online practices,” she said. “But it’s the in-person that they need. It’s the one-on-one. It’s like schooling, at least a certain number of hours a week. We can’t do that.”
Smith has been vocal about changes to the Autism Ontario Program and the push for parent training and virtual resources. But the situation families are in now demonstrates how that isn’t the best option.
“It highlights the problem that parents are not therapists,” she said. “The kids need the one-on-one, a trained ABA therapist to do this work. It’s not as effective. And I think parents and people in general are just burnt out. So to put this on top of them is exhausting. It is so exhausting.”
The Ford government announced a six-month extension for the childhood budget for families caring for a child with autism, but Smith said the minister of children, community and social services, Todd Smith, has been mostly silent on the issue and families caring for loved ones with a disability feel like they are falling through the cracks.
“They have always fallen through the cracks and they continue to fall though the cracks,” Smith said. “There has been a complete lack of direction from Todd Smith. He hasn’t even addressed the families that are caregiving at home and the support that they need. I think that this pandemic has really highlighted the crisis that was already in the system here. There’s been loss of supports for kids and services.”
Smith said she has already seen a regression in some of Conor’s skills, which she said is to be expected, and she hopes he will get back to where he was when things return to normal.
“That is a huge fear for a lot of families,” Hathazi said. “I think they recognize that, especially ones that are in consistent therapy and then being away from that. They won’t have that constant input.”
Hathazi said even when things do return to normal, the transition again for children with autism will be a challenge.
“It will be more of an issue for the kids then because they struggle so much with the transition,” she said. “And mental health and exhaustion for the families, that is one of the biggest ones as well.”
Families are appealing to the provincial government for more supports, Smith said, because while everyone across the province is struggling with the COVID-19 pandemic, those who were facing challenges before are in much more difficult position now.
“The one thing we hear from families is they need respite. They need support from the government,” she said. “A lot of autism people have co-morbid conditions. A break in routine and consistency is making the situations worse and really difficult for families. There is increase in self-harm, harm to others, the list goes on.”
