Many parents of children with autism spectrum disorder (ASD) carefully craft their child’s schedule to smooth out transitions and give them plenty of physical activity so they can thrive in school.
But the limited social interactions and upended schedules that are defining COVID-19 quarantines have disrupted those strategies, according to Dr. Rooman Ahad, a pediatric neurologist at the UNLV School of Medicine.
“Parents of autistic children are generally prepared. They come with the right snacks; they are prepared for meltdowns and changes,” Ahad said. “[But] I don't think anybody was prepared for this. That was the biggest challenge. Everything happened so fast.”
Ahad is the division head of the pediatric neurology department and the only board-certified neurologist in Nevada with training in the field of autism.
On her telehealth calls, parents ask for advice to help their kids adjust to the sudden absence of their favorite classmates and usual routines. What activities would help keep kids occupied? Why have their sleep patterns changed? Why is it hard for kids to get motivated to learn on the computer or tablet?
“What we are counseling parents on is keeping that routine as best as possible. Waking up and going to sleep (like before); creating a schedule and sticking to it as much as possible,” Ahad said. “And not being too hard on kids. Keep small goals for each day and go from there.”
Her patients range in ages up to 18 years old and each individual has a unique treatment plan. She also sees patients with neurological medical conditions such as epilepsy and seizures. Some of her patients with autism have pre-existing conditions, making them among the most at high-risk for the coronavirus.
“The main concerns I am hearing are behavioral concerns at home,” Ahad said. These behaviors likely are not new, but were less pronounced when the kids were engaged in doing activities and going to school, she added. “Children are used to having teachers as an educator and authority figure. Most children will be different at school than at home.”
The behaviors manifest in defiance, impulsivity, and low motivation.
While talking to children about the coronavirus can be difficult for any parent, Ahad advises parents of children with ASD to meet them where they’re at.
“It's understanding the level of comprehension of your child on the spectrum. It doesn’t hurt to have a conversation on basic hygiene, basic safety, and washing hands,” Ahad said.
Some of her patients have a lot of energy and are used to recess time where playgrounds are controlled environments and monitored. Some children with ASD may not be able to sense danger, so parents may not be able to control their kids in parks — especially if parents are juggling more than one child.
The pandemic has shown how the experiences for families of children with ASD differ, Ahad said. Many parents are juggling their own workloads from home and may have more than one child. There are single parents. There are co-parents trying to divide responsibilities as best as possible. There are grandparents who are at higher-risk and can not care for their grandchildren like they did pre-COVID.
Ahad can see her patients in-person safely following the UNLV School of Medicine’s social distancing protocols. Most of Ahad’s patients have separate in-person visits with physical, behavioral or speech therapists. But telehealth therapy is available for parents may not feel comfortable bringing their children into public spaces.
Her treatment plan looks at the family holistically. She often checks in with the parents to see how they’re doing.
“What I really find most autism parents have been through so much and this is a challenging time, but they have really risen to the task — that is what always amazes me,” Ahad said. “They don't complain. They are saying ‘I am noticing these behaviors’ and they are open and honest. A lot of parents are enjoying the quality time with their kids.”
Ahad advises parents to also consider therapy for themselves, or finding supportive networks through social media, AutismSpeaks.org, and the UNLV Ackerman Autism Center. Families and friends can drop off meals and do check-ins as well.
“I find a lot of my answers come from patients’ parents and I often implement that into their plans. I ask what are your concerns, where you thrive and what you're struggling with. Parents are so selfless when they come to visit they focus on their children's needs. I rarely hear a parent that says they're lost or needs help. They never complain for themselves,” Ahad said.