Virginia Mazzone-Ahou laughs over the phone from her home in Whitby, Ont., but her anxiety is palpable. Her son, nine-year-old Anthony, is struggling without therapy for his non-verbal autism, developmental delay and severe eating disorder. Not being able to go to school has further exacerbated his distress, which is manifesting itself in regressive behaviours.
“The behaviours that we had managed to lessen in the past four years have come back. We had managed to get to a place where he could sit at the table to do his work for a length of time and he could go without speaking or interrupting the instructor. Now, there’s lots of non-functional language and scripting. He can’t focus and he’s not allowing himself to learn,” Ms. Mazzone-Ahou says.
Frustrated, Anthony has also started destroying things around the house again. “There’s more aggression and he’s using less words, which is a huge setback for all of us” she says.
“Between homeschooling, co-ordinating therapy and keeping my son alive, I think I’m doing just about okay.”
In order to adhere to physical distancing guidelines designed to tackle the pandemic, centres providing services for children with disabilities have either curtailed their operations or switched to online and telehealth sessions. But many parents are concerned that such sessions simply won’t be enough for their children who need physical redirection and in-person experiences to thrive – and who perceive a laptop as a source of entertainment and do not respond to it as an educational tool.
Jessica Moran, who lives in London, Ont., is despairing over her daughter Maggie’s reaction to being separated from her respite worker. Maggie, 12, has high anxiety related to her autism and ADHD.
“My daughter misses the in-person connection with her respite worker, Mary, who is her only friend outside of our family, so it’s been a real struggle for her. Maggie’s comfort level is generally to stay isolated, but she made an exception for her outings with Mary. They went to the movies, bowling and to her tween group with other autistic tweens. All that is gone,” Ms. Moran said.
She is uncertain about the effectiveness of online therapy but is working on strategies with therapists to make it easier for Maggie to adapt. “We are talking to her constantly about how this is the ‘new normal’ for a while and as soon as it’s safe she will be reunited with her support team,” she said.
Education experts who have worked extensively with children on the autism spectrum are trying to get on board with the online delivery system but acknowledge that this is a good time to provide parents with tools to help their kids in the interim.
“Schools and other service providers are struggling with how to educate children at the level they need. Even with telehealth, we will not be able to create the same type of connection that is possible when we provide face-to-face intervention. However, this is a unique opportunity for us to provide parent education. It’s as important as ever that parents are an integral part of the team,” said Lynn Kern Koegel, a clinical professor at the Stanford University School of Medicine and a pioneer of the pivotal response treatment for autism, which is based on motivation and the ability to respond to multiple cues.
Prof. Koegel suggests that parents engage their children in daily activities such as cooking to teach skills like reading and measuring and also to target specific behaviours. “Think of target behaviours that may be helpful for parents. For example, teaching a child to help set the table or fold the laundry can be helpful now for parents and in the long run for independent living,” she said.
For the foreseeable future, an all-hands-on-deck, one-day-at-a-time approach seems to be the way forward. “Time can’t be reversed, and we’re looking at many months of missed interventions, socializing, school routines and maybe even summer programs. As much as humanly possible, try and keep a routine and practise social communication," Prof. Koegel said.
"If children gain communicative skills they can be prompted when this mess is over. Try and stay positive. It’s hard on everyone but especially children with [autism spectrum disorder]. One of my children’s favourite daily activities was going to the neighbourhood park. He keeps asking to go and doesn’t understand that he can’t go out, which is very frustrating.”