URBANA, Ill. – Right now, the best advice Linda Tortorelli can give the parents she and her staff serve through The Autism Program (TAP) is this: “Maintain some kind of routine the best you can, but also be forgiving of yourself.”
For Tortorelli, director of TAP at University of Illinois, it’s advice she’s taking herself these days, as a mother at home with a son on the autism spectrum. “It's been a balance of offering parents suggestions, but also giving them permission to be lenient and not be guilt-ridden with what they're having to do.”
Before the COVID-19 stay-at-home order, Tortorelli and TAP staff offered research-based, in-person programs, workshops, and resources for families in the community, as well as for college students on the U of I campus. With the order, TAP had to close its doors to its walk-in resource center and offices, housed in Christopher Hall on the edge of campus.
But TAP’s service to the community hasn’t stopped. Taking into account some of the unique challenges individuals and families dealing with autism face, TAP has pivoted to continue providing education and support.
Based on parent surveys taken last fall, Tortorelli and staff had planned a series of in-person training sessions on Tuesdays throughout the month of April, which is Autism Awareness Month. TAP moved those session to Zoom, and Tortorelli says attendance exceeded their expectations.
“What's really been nice is the number [of attendees], Tortorelli says. “We had 88 people participate in the session on autism myths, 39 people participate in the picky eaters session, and 40 people registered for the session on sleep.
“These are open to parents, caregivers, and any interested people. We don’t limit who can attend,” she adds. “We’ve had just as many professionals as parents and grandparents.”
Additionally, staff are turning topics from parents into three- to five-minute video tutorials for children 8 and older on the autism spectrum, their parents, and the professionals who serve them.
The first tutorial up: how to behave appropriately on Zoom or other social media platforms.
“We are teaching children what's appropriate social behavior on Zoom classroom sites. We thought we'd start there for kids who, for example, may not really know how to keep their body in the screen,” she adds.
Like many families at home, access to internet or home computers can be a challenge. Tortorelli says this has come up with some of the families TAP works with. But families with children on the spectrum are facing some unique challenges during this time of staying at home.
One of the biggest challenges for individuals or families dealing with autism is the change in routines.
“For my own son who is on the spectrum, sleep is a big issue. When that circadian rhythm is off, all the other routines are off. I know a lot of families are dealing with this as well. Once one routine is off, it’s often a cascading effect,” Tortorelli says.
Another issue parents are seeking advice on is how much time on electronics is too much for their kids.
“There’s this decision parents need to make about how much access to electronics they should give kids, beyond learning, to play video games,” Tortorelli says. “Parents are feeling guilty about giving them so much access to their video games and their electronics right now. But in some cases, those kids are playing video games with peers. So they're getting some socialization through those video games because they can communicate.
“Right now it’s about striking a balance and not adding another layer of guilt and worry that you’re going to destroy your child forever,” she adds.
The staff is developing other summer online opportunities for families and kids now that summer camps have been cancelled. So far, the schedule includes online social skills groups for adolescents 9 to 12 years, and 8th grade through high school seniors, focusing on making friends, interpreting and responding to verbal and non-communication, and more. TAP will also offer an executive function Zoom group designed for rising 6th through 9th graders during which students will learn organization skills and working through the stress of homework. Find registration information and full program descriptions, as well as summer training opportunities here.
Until their doors open again, TAP continues to respond to emails and phone calls, though there has been a decline in the usual requests they receive from the community. “I think people are just sort of overwhelmed with having to work at home, if they have a job, and homeschool their kids particularly if they are on the spectrum, in addition to their siblings,” she says.
Typically, TAP staff works to match parents and families with government agencies or other support services. Tortorelli says, some of those services are now less available.
“Many therapeutic providers, such as speech and occupational therapy, and applied behavior analysis, are less available, although some have gone online a bit. But, if you're doing a therapy online, you have to be really involved in that therapeutic process, which can be good for parents to learn. But it's just another layer that families may or may not be able to handle right now.”
And for parents who are struggling, TAP is now offering a new support group, called “Wine Down.” With help from Amy Cohen, director of the autism clinic at the U of I Psychological Services Center, this online, informal weekly Zoom support group targets parents now having to provide more care for kids at home. “This has been a more intimate way to reach out to people who maybe really need it, and have room in their bandwidth to seek that kind of help right now,” Tortorelli says. These sessions are not recorded.
Some of the best news TAP has received in these challenging times is that, for now, their funding will continue through the Illinois Department of Human Services.
“We are trying to be really responsive and creative with what we can do,” Tortorelli says. “We keep trying to reach out to hear what people need and create virtual programming that's accessible to people.”
The Autism Program is housed in the Department of Human Development and Family Studies in the College of Agricultural, Consumer and Environmental Sciences (ACES) at U of I.