For children with autism spectrum disorder, who thrive on routines and predictability, the everyday disruptions and uncertainty from the pandemic may be especially stressful.
Cherished schedules changed overnight. Social outlets are gone. And certain therapies and professional supports may have decreased or not be an option right now.
“Families who have a child with autism are facing extraordinary challenges,” says Sarah Mohiuddin, M.D., a child and adolescent psychiatrist at Michigan Medicine C.S. Mott Children’s Hospital.
“People with autism feel more comfortable with routines, which can make any change a stressful event.”
Families may be seeing a regression in challenging behaviors or meltdowns as children cope with changes and may not know how to communicate frustrations. And that can be difficult on everyone.
“Many parents are trying to promote their children’s learning and emotional health without the usual support or structure from the school day, while likely also managing their own stress from the situation,” Mohiuddin says.
But there is hope and help. Mohiuddin offers top tips for families to help children adjust to changes.
1. Talk about COVID – but turn off the news
Even if a child hasn’t asked about it or is unable to, they likely have questions about coronavirus and have probably heard conversations around them. Parents should provide opportunities for asking questions and use visual supports to help explain the situation and to reinforce key messages like proper handwashing techniques, at the child’s developmental level.
Mohiuddin recommends using social stories to explain COVID-19. This can be done using your own drawings or through videos and graphics available online through resources like Autism Speaks. Michigan Medicine’s psychiatry department also offers tips through its Zero to Thrive site.
“You want to offer information about the virus and how people can protect themselves in a simple, non-scary way,” Mohiuddin says. “Kids with ASD may better grasp the information through visual materials like pictures or videos.”
But also minimize exposure to the news. Having the television or radio news on too much may make the subject overwhelming and even more confusing and stressful. Try to prevent children from searching about the virus online where they are likely to find misinformation that may increase anxiety.
2. Re-create structure – and use visuals
It’s no surprise that some of the most challenging times for children with ASD often correlate with seasons when typical schedules are interrupted, such as the holidays or summer, Mohiuddin says.
Children with ASD seek familiarity so she recommends creating a daily schedule that loosely mirrors their regular school day with built in breaks for snacks, lunch and physical activity. But instead of making a new schedule on your own, work with children to create it.
For example, ask them “do you want to have outside time before or after lunch?” or “do you want to play with Legos or playdough for creative time?”
“If they are able to be involved in developing their own schedule, this may help them feel in control of what seems like an uncontrollable situation,” Mohiuddin says.
Using visual and audio cues to reinforce steps in the day is also beneficial. Make sure the schedule is very visible and consider using visuals along with written words. This could include pictures of them doing their activities, such as eating breakfast, playing outside or doing schoolwork. Or you could use icons (available for free on sites like do2learn.) Using auditory reminders, such as timers, to help them transition from one activity to the next, is also a good tool.
“Children with autism may struggle with unanticipated changes and like to know what to expect,” says Mohiuddin. “Knowing what’s going to come next gives them that predictability that’s so comforting.”
3. Seek social outlets
Children with ASD may have difficulties with social communication and interaction. But that doesn’t mean they’re not troubled by the loss of social outlets like school and activities. Face-to-face interactions also provide them with opportunities to practice and develop social skills.
“A lot of children with autism enjoy and seek out social interactions,” Mohiuddin says.
Mohiuddin encourages parents to look for ways to virtually connect children and teens with relatives, classmates and friends through virtual platforms. Remember that for children with ASD, contact with teachers and therapists isn’t just for school or treatment – but to also provide important social connections.
“Taking care of children with autism requires a team approach and wide support network,” Mohiuddin says. “Teachers, aides and interventionists often serve multiple roles in children’s lives as both supporting learning and treatment and also as social outlets. Think about how you can establish contact with them even if it’s not in an academic or therapeutic context. It could just be to check in and to say hi.
“Regularly touching base, even if briefly and casually, may also help prevent worsening social anxiety when social distancing ceases.”
Some kids may also be disappointed about planned activities being cancelled. Consider making a poster listing activities you plan to reschedule so they know you’re not going to forget about them and doing virtual tours through places that offer them, like the zoo or local museum.
4. Make screen time intentional
Experts recognize that typical screen time rules may have relaxed a bit at a time when many kids rely on devices for remote learning. But for some children, especially those who may have both autism and ADHD or sensory issues, too much screen time can also exacerbate issues like hyperactivity, trouble with sleep and irritability.
“For kids with autism, electronics can be a positive tool to connect and engage with others,” Mohiuddin says. “But there’s also the risk that too much screen time may lead to an increase in challenging behaviors. The key is to be intentional about how and when children are using devices.”
She recommends establishing designated times and spaces. Make clear what times should be spent on school or connecting with peers. Limit the amount of time that’s considered “free time,” since children with ASD already often struggle with getting off of devices. Also make sure to get a healthy dose of outside and unplugged time too.
Parents, who may be working from home and are also on screens, should try to carve out times in the day, even if short, to have one-on-one, screen-free time with children. This could be 15 minutes spent playing a game, talking over a meal or interacting using toys that promote development.
5. Optimize treatment opportunities
Many typical interventions or medical appointments may not be available in the same format because of stay-at-home orders. However, a number of providers, including medical professionals, speech pathologists and behavior therapists have transitioned to providing e-services or video visits. Speak with your providers to see what you may be eligible for.
Some therapists have also shifted their approach to center on a parent training model to provide parents with tools to manage interventions at home. But some children may have significantly more behavioral dysregulation. If that’s the case, parents should call providers to see if they qualify for in-person services.
“Explore any opportunities that will help maintain the skills that your child has gained through interventions and treatments,” Mohiuddin says. “Don’t lose contact with your providers. It’s important to stay connected whether or not things are going well.”
This may also be an opportunity to explore other goals such as cooking together and working on independent skills like getting dressed without help. Young children could practice handwriting through letters to loved ones or drawing pictures.
“Many families were so busy with treatment that they didn’t have time to focus on activities that promote daily living skills like how to navigate a recipe or think through how to plan clothing choices based on cues like the season or the weather,” Mohiuddin says.
“If it’s something families can do together, it may lead to positive skill building over time.”
6. Don’t forget self-care
“Trying to juggle the needs of a child with autism as well as all of the other demands of managing a household, work and other family members in the home can be challenging for caregivers,” Mohiuddin says.
She recommends planning time to engage in activities that will help replenish your energy and motivation such as talking to friends, engaging in a favorite activity or getting exercise. Also remember to maintain sleep hygiene and proper nutrition.
Caregivers should also do what they can to stay connected with their own support networks, whether that’s providers or autism parent and caregiver networks.
“We know that being a caregiver of someone with ASD is stressful,” Mohiuddin says. “All kids will pick up on this stress but it’s more pronounced for those with ASD. Kids with autism tend to be more sensitive to stress in their environment and the reactions of their caregivers.
“Engaging in self-care right now is really important both for you and your child.”