The Autism Center and COVID-19: Our Parents Are Our Superheroes
COVID-19 has completely changed the way Dr. Mirjana Maletic-Savatic—a physician-scientist who conducts cutting-edge research at the Jan and Dan Duncan Neurological Research Institute and treats patients with autism spectrum disorder (ASD) at Texas Children’s Autism Center—practices both science and medicine. But one thing hasn’t changed, and that’s her commitment to her patients and their families. “These are difficult times for everyone with children, but the pandemic really puts extraordinary pressure on families of children with health challenges and special needs,” she says.
This is especially true for patients with ASD. Although each of Dr. Maletic-Savatic’s patients is different, she says that one common feature among them is the love of routine and reliance on structured schedules, both of which the pandemic has upended. Schools closed. Therapies stopped. This previously unfathomable disruption has led many children with ASD to regress. “We are seeing children who have stopped talking, are clinging to mom, behaving aggressively, and losing sleep, and so we’re also seeing parents who really are working around the clock,” Dr. Maletic-Savatic says.
She worries in particular about single parents, who in her practice tend to be moms. “Some have lost their jobs,” she notes. “Some have contracted COVID-19 or have lost parents to it. They are all trying to juggle so many things. How do I get groceries? How can I cook, work, and care for my child and his siblings?” One such mom now works the night shift and barely sleeps in order to care for her child with autism during the day. “The support we give these families has become extra important during the pandemic. We know we have to do more.”
The Autism Center embraced this challenge as soon as the pandemic struck. The team there immediately employed a robust tele-health system to safely meet families’ needs and began doing as much as possible to help them—like printing and mailing insurance, referral, and school forms to patients’ homes and scheduling recommended appointments directly. “Tele-medicine has been a lifesaver,” Dr. Maletic-Savatic says.
The Autism Center staff, from clinicians to administrators, have worked together to create a safety net that’s larger and tighter than ever. Staff are often on the phone 10 hours per day walking families through insurance claims, new diagnoses, and treatment plans. “And I think even when it’s not about anything substantive, it’s important just to talk to our parents and show them that we care and that they’re not alone,” she says.
Making visits to the Clinic as comfortable as possible has been another challenge that providers, patients, and families are facing together. The Autism Center was meticulously designed to benefit its patients: a spacious waiting room to accommodate running and movement; ample books and toys in the waiting and exam rooms; a secure outdoor playground, where doctors sometimes examined patients too anxious to be confined indoors; clinicians dressed in approachable street clothes; and a treasure chest from which patients could choose favorite toys on their way out.
“Now,” Dr. Maletic-Savatic notes, “we do temperature checks at the door; even the kids have to wear masks; only one parent is allowed inside; the toys, games, and even the chairs are gone [for sanitary purposes]; and I wear PPE when I see patients, so to them, I look like a Martian! They uniformly scream and try to hide when they see me.”
Obstacles like these mean that the staff is adjusting all the time. For example, in Dr. Maletic-Savatic’s newly spartan exam room, she has done everything from letting the faucet run to allowing patients to play with the window-blind pulleys—anything to soothe children in distress. “I even allow them to play on a smart phone to calm them, which I didn’t used to do,” she says.
Dr. Maletic-Savatic is also adjusting to the necessary COVID-related restrictions at her laboratory in the Duncan NRI. If anything, witnessing families’ heightened suffering further motivates her to drive ASD research forward, leading the charge to treat this complex and heterogeneous spectrum of disorders. The same goes for her Duncan NRI colleagues. “The support here has been amazing,” she says. “Everyone has come together—we are now an even tighter family than we were before.”
In the end, Dr. Maletic-Savatic’s commitment to her job is stronger than ever, even if it looks different than she ever imagined it would. “These parents, these kids are amazing,” she says. “Our job—our reason for being physicians and scientists—is to do whatever needs to be done to help them.”