By Adrien A. Eshraghi, M.D.
University of Miami Health System
The COVID-19 pandemic is stressful enough, but for children and adults with autism spectrum disorder (ASD) and their families, the crisis can be especially tricky.
I’ve dedicated much of my career to caring for individuals with various disabilities, including those with autism, who are very dear to me.
Challenges unique to those with autism
People with autism are at higher risk for COVID-19 complications, according to the CDC. This is because they tend to have immune disorders and other comorbidities. The process of isolating can be especially hard on children with autism and their families. The pandemic disrupts routine, which is problematic for these patients and caregivers. Those with ASD might have difficulty comprehending the situation and expressing themselves. Depending on where they are on the spectrum — from extremely high to low functioning — they might have challenges with communicating, hyperactivity, and behavioral issues. Some individuals on the spectrum are susceptible to sound or bright light.
Because of these challenges, which may be experienced at the same time in some instances, people with autism and their caregivers are likely experiencing heightened stress during this time.
When you need emergency care during this pandemic
When patients with ASD need medical care during the pandemic, the situation for them and their families often becomes even more overwhelming. The healthcare environment, especially in the emergency room, can be challenging and overstimulating for people with ASD due to the crowd, sounds, and lights. It’s important to reduce that stress.
You may run into the following issues:
- Caregivers are not allowed into many ER exam and hospital rooms during the pandemic. But in the case of autism, patients need their caregivers to help keep them be calm and facilitate communication with providers.
- Some people on the spectrum don’t have a concept of having to wait for their turn, so they’re impatient when they have to wait.
- Children with autism might refuse or take off their masks because of sensory issues.
- If you’re a parent or caregiver of a child with ASD, ask if you can wait in the exam room, rather than in the waiting room.
- If a child or adult with ASD keeps taking off their mask, ask if you can get more face coverings to keep everyone safe.
- Telehealth (speaking with your healthcare provider over phone, text, or video chat) can be a promising solution. We’re still developing ways to provide these services, so they’re geared specifically toward those with autism.
- We are encouraging healthcare providers and hospital staff members not to judge parents in this situation.
Advancing care for those with ASD
People with autism spectrum disorder are not just another population vulnerable to COVID-19 infection. While they may share similar needs with other at-risk groups, some of their requirements are unique. In the era of COVID-19, healthcare providers must understand these challenges to develop solutions.
To address the challenges and needs for families and healthcare workers caring for those with autism, my colleagues and I have recently published COVID-19: Overcoming the Challenges Faced by Individuals with Autism and Their Families in The Lancet Psychiatry journal. We hope our commentary begins to provide a framework for more effective healthcare, therapy, education, and family support.
However, there is recent evidence of a multisystem inflammatory syndrome in children (MIS-C) associated with COVID-19 infection. MIS-C is described as inflammation (swelling) across multiple body systems. Read more.