What you might not know about autism and the impact of the COVID-19 pandemic

If there has been one constant throughout the COVID-19 pandemic, it has been change. Case rates, hospitalizations, virus variants and restrictions have all ebbed and flowed. The collective impact of all this change has been hard to navigate, and it has been particularly challenging for autistic people.

“Change can be very difficult for many people with autism, and in March 2020, suddenly schedules and routines and learning environments were disrupted,” says Brad Hood, MD, a physician who specializes in developmental behavioral pediatrics at Mary Bridge Children’s Hospital. “Community support and activities they once had disappeared. Now another wave of change is happening as much of life resumes in person, yet many of those supports still aren’t there.”

As we emerge from the past two years of upheaval, find out what many autistic individuals have faced, what support and resources are available at MultiCare and where progress can still be made.

What is autism?

About 1 in 44 children is identified with autism spectrum disorder, according to the Centers for Disease Control and Prevention (CDC).

Autism spectrum disorder is a developmental disability that can impair a person’s ability to communicate and interact socially. It may also have an impact on behavior, potentially leading to repetitive movements or play or highly restricted interests, for example. While specific criteria must be met for a person to receive an autism diagnosis, no two people with this disorder have the same experience.

“People with autism display an extraordinarily wide range of abilities, differences and strengths,” says Amy Prezbindowski, PhD, manager of Child and Family Services for MultiCare Behavioral Health. “Some people with autism may not be able to speak at all, and some may require full-time care while others go on to hold important jobs out in the community.”

The impact of the pandemic

Because autism affects people differently, the types of services and professional support needed across the lifespan also vary and may include therapeutic services such as speech, language and occupational therapy; special education; transportation services; and more.

Yet many of those resources became unavailable or hard to access during the pandemic.

While school-based services have resumed, many are not as robust due to a lack of staffing, and some therapy providers only offer services virtually, which tends to be less effective for autistic people. Ultimately, this ongoing disruption has taken a heavy toll.

“A lot of children with autism have missed out on specialized instruction as well as opportunities to develop social skills, and their families have had no access to respite care,” says Prezbindowski. “Many people with autism — both children and adults — experienced increases in the severity and frequency of behavioral issues when they lost that support and sense of structure in their daily lives.”

Mary Bridge Children’s Emergency Department has witnessed the fallout from these disruptions firsthand. Throughout the pandemic, they’ve seen a significant uptick in the number of youth experiencing behavioral health crises who have secondary cognitive challenges such as autism.

More comfort, less stress in the hospital

Whether autistic children are experiencing behavioral health crises or simply accessing routine medical care, the hospital setting can be particularly stressful, in part due to environmental sensitivity.

“A lot of people with autism are over- or under-sensitive to sights, sounds, touches and smells compared to what most of the population experiences,” Prezbindowski says. “For example, ‘Jingle Bells’ playing in the background of a clinic waiting room could feel like nails on a chalkboard to someone with autism. Sometimes these sensitivities can trigger behaviors that may seem out of control yet are just a sign that a person is overwhelmed by their surroundings.”

In 2021, Mary Bridge received a $15,000 grant from the Children’s Hospital Association and The Toy Foundation to lessen this sense of overwhelm and support sensory-friendly experiences for hospitalized patients. One of six pediatric hospitals across the country to receive such an award, Mary Bridge is in the process of using the grant funds to purchase equipment such as tactile domes, rocking chairs and inflatable ball chambers that can help ease patients’ anxiety and distress.

In addition to providing sensory-friendly play opportunities, Child Life Services at Mary Bridge helps autistic children and children with other developmental challenges have successful and positive medical experiences.

“When possible, we try to proactively communicate with parents and caregivers ahead of a hospital or clinic visit,” says Julie Hertzog, supervisor of Child Life Services. “They are the experts when it comes to their children. When we can discuss how a child communicates, what behaviors we can expect or what helps calm a child, we can collaborate to support that child while they’re at Mary Bridge. For example, if we’re aware that a child can be agitated by bright lights and loud noises, we can work to alleviate those stressors.”

Beyond pre-visit planning, Child Life Services also offers practice appointments and tours as well as medical play sessions, which can help children feel more comfortable about upcoming tests or procedures. These services are free of charge and available at Mary Bridge Children’s Hospital in Tacoma. Learn more.

What to do if you suspect autism

If you think your child may be autistic, it’s a good idea to contact your pediatrician. However, wait times to receive a diagnostic evaluation can be long — anywhere from six months to a year.

The good news is that an official diagnosis of autism is not necessary for a person to start receiving services. How you access those services depends on your child’s age.

“Every county offers free early intervention services for children 3 and under who may have conditions like autism or developmental delays,” says Dr. Hood. “You don’t need to wait to talk to a medical professional to start getting those services, which could include speech therapy or early education, or a number of other options depending on the need.”

For children over 3 years old, services are typically provided through the school district. According to the federal mandate Child Find, families have the right to request an evaluation for services (not the same as a diagnostic evaluation for autism), whether their child currently attends public school or not.

“Accessing support services first can actually help diagnostically,” says Dr. Hood. “For example, if we are evaluating a 4-year-old for autism who has been in a developmental preschool for a year, there’s going to be a lot of information available about how that child interacts with peers and what kind of communication progress they’re making. It’s harder to make a diagnosis if they don’t have much social experience to draw from.”

At Mary Bridge, autistic patients have access to a nurse navigator who specializes in helping families locate therapy and support services within and outside MultiCare.

What about adults?

Discussion around autism is often centered on children, yet it’s a lifelong diagnosis, and the lack of programs and services for autistic adults is a problem that long preceded COVID-19.

“Once people age out of school-based services, it’s like falling off a cliff — there is very little help available in the community, and most insurance plans will no longer cover therapeutic services,” Prezbindowski says.

While services for autistic adults are scarce on both a national and regional level, MultiCare opened a clinic in 2018 that supports teens and adults with developmental disabilities, including autism.

The goal of the MultiCare Adult Developmental Clinic, located in Pierce County, is to ease that transition from pediatric to adult care and provide ongoing support throughout adulthood.

“The clinic offers a unique service,” says Dr. Hood. “They perform comprehensive evaluations, assessing things like a person’s medical, functional and psychiatric needs, and then they try to match them with appropriate services and resources in the adult realm.”

The Adult Developmental Clinic welcomes referrals for teens and adults of all ages. Learn more.