5 Things People With Autism and Their Caregivers Should Know About COVID-19 Vaccines

People with autism spectrum disorder (ASD) have had unique burdens during the pandemic. “COVID-19 has been devastating to the autism community, as well as the greater intellectual and developmental disability community,” says Christopher Banks, the president of the Autism Society of America. “We’ve seen service interruptions, failure of the education system to provide services, isolation, and we’ve even seen higher death rates.”

Autism spectrum disorder (ASD) is a developmental disability associated with social, communication, and behavioral challenges.

In fact, people with developmental disabilities such as autism are more than three times as likely to die following a diagnosis of COVID-19 than others, according to a report published on March 21, 2021, in NEJM Catalyst: Innovations in Care Delivery. The study it described examined nearly 65 million U.S. patient records in 2020.

The researchers also found that those with intellectual disabilities were 2.75 times more likely to die than those without intellectual disabilities. Roughly one-third of people with ASD also have an intellectual disability, according to the Centers for Disease Control and Prevention (CDC).

“It is critical that those with disabilities get vaccinated as soon as possible, as vaccines can prevent death,” says Alycia Halladay, PhD, the chief science officer for the Autism Science Foundation in Scarsdale, New York.

According to the CDC, 1.85 percent (1 in 54) of 8-year-old children in the United States were identified as having an autism spectrum disorder in 2016. Boys were four times more likely to have ASD, and both Black and white children were 1.2 times more likely to have the condition than Hispanic children.

Here’s what people with autism and their caregivers should know about the COVID-19 vaccines.

1. Why Are People With Autism at Higher Risk of COVID-19?

The higher risks of COVID-19 that researchers found in people with autism aren’t due to the developmental or intellectual disabilities themselves, but rather because people with them are more likely to live in a group setting, be unable to communicate about having symptoms, or have trouble understanding or following safety measures, according to the CDC.

“Sometimes it is difficult for people with ASD to wear masks and keep social distancing, [and they place] themselves and others at increased risk of spreading or acquiring COVID-19,” says Robert Hendren, DO, a psychiatrist and the director of the program for research on neurodevelopmental and translational outcomes at the University of California in San Francisco.

“Early symptoms may be overlooked because people with ASD may not be able to express their discomforts, such as sore throat. If someone with ASD gets COVID-19, they may have a very difficult time being in the hospital and receiving treatments that are unfamiliar, uncomfortable, and potentially scary,” Dr. Hendren explains.

Further, and as noted by the authors of the NEJM Catalyst report, people with intellectual disabilities are more likely to have other health problems at the same time that put them at higher risk for infection and COVID-19 disease, such as heart disease, obesity, and diabetes. Banks says this is true of people with ASD as well.

For all these reasons, Hendren says he encourages people with ASD who are eligible to be vaccinated to get vaccinated; and the same for their loved ones and caregivers.

RELATED: How to Care for Yourself When You’re Caring for Someone With Autism

2. What COVID-19 Vaccines Are Available for People With Autism?

Currently, three vaccines are available to all adults and some children in the United States, having been approved by the U.S. Food and Drug Administration (FDA) under emergency use authorization. They are all safe and effective against infection and disease from the SARS-CoV-2 coronavirus that causes COVID-19, according to the CDC.

Two of them rely on mRNA technology, which instructs immune cells to make a fragment of protein that will enable an immune system response against the disease if you are infected with the virus, says the CDC. The two mRNA vaccines are:

• Pfizer-BioNTech vaccine, which is approved for people ages 12 and above; it is delivered in a two-shot regimen given three weeks apart.
• Moderna vaccine, which is approved for those ages 18 and above; it is delivered in a two-shot regimen given four weeks apart

Both are at least 90 percent effective in preventing symptomatic infection by the virus that causes COVID-19, according to the CDC. In each case, two weeks after the second shot you are considered to be fully immunized.

The third vaccine is Johnson & Johnson’s Janssen vaccine, a “one and done” inoculation that involves a single shot and then a two-week waiting period to achieve full vaccination. It uses viral vector technology with an adenovirus, which belongs to a family of viruses that can cause cold- or flu-like symptoms. A modified version of the adenovirus that is noninfectious enters cells and instructs them to make a protein fragment that will prompt an immune system response if the person is exposed to the SARS-CoV-2 coronavirus, the CDC explains.

RELATED: The Johnson & Johnson COVID-19 Vaccine: What You Need to Know

The J&J vaccine is at least 66 percent effective in preventing a COVID-19 infection and even more effective in preventing hospitalization and death.

These three vaccines are available to all adults in the United States currently (with the Pfizer vaccine being authorized for kids as young as 12), including people with autism and other developmental and intellectual disabilities.

If you’re the caregiver of a child with autism who is not yet eligible for a vaccine, the best way you can lower their risk of getting COVID-19 is to get vaccinated now yourself, says Dr. Halladay. “Parents of kids with autism need to focus on getting themselves vaccinated,” she says — you’ll lower your risk of getting sick and leaving your child without a caregiver and you’ll lower the chance of becoming sick and passing the virus to your child.

RELATED: Fully Vaccinated People Can Go Mask-Free in Most Cases, CDC Says

3. Are COVID-19 Vaccines Safe for People With Autism?

The vaccines are just as safe for people with ASD as they are for others, according to the experts interviewed for this article. People with disabilities, including autism, were included in the clinical trials of the vaccines; those clinical trials showed that the vaccines were safe and effective for everyone, according to a fact sheet published by Autism Speaks.

People who should not be vaccinated with the mRNA vaccines (Pfizer or Moderna) include those who have had a severe allergic reaction — severe enough to have been hospitalized or to be treated with epinephrine or EpiPen — to an ingredient in the vaccines, such as polyethylene glycol, says the CDC. Those who had a severe or immediate reaction to the first vaccine shot should avoid it as well. Similar guidance is given for the J&J vaccine, for those who have a history of being allergic to polysorbate or another ingredient in it. In all cases, these are rare bad reactions.

Under no circumstances can the J&J vaccine, Pfizer, or Moderna vaccines infect you with the virus that causes COVID-19, change your DNA, affect your fertility, or affect the DNA of a child born to a vaccinated mother, according to the CDC.

While they are overwhelmingly safe, there are rare instances of bad reactions to the vaccines. Administration of the J&J vaccine resumed in the United States after a brief pause in April 2021 to assess its safety. The FDA and CDC advise that women under the age of 50, in particular, be aware of the rare risk of having blood clots with low platelets in reaction to the vaccine.

Halladay adds: “The most common side effect after the vaccine, either the first or second dose, is a sore arm. Most people who get the vaccine can continue activities of daily living, but a small percentage say they were too tired to work or do daily activities for about a day. COVID-19 infection, on the other hand, can lead to hospitalization,” she says — “with longer hospital stays being associated with higher risk of death.”

Her bottom line: ”The science is clear: You are better off vaccinated than not vaccinated.”

4. Is There a Link Between COVID-19 Vaccines and Autism?

No, says Halladay. But an infection of any kind in the mother during pregnancy has been linked to a greater risk of ASD in children — another incentive to be vaccinated, she says.

Halladay points to a study of U.S. participants published in Autism Research in October 2019, which found that maternal infection that included fever in the second trimester of pregnancy was associated with a twofold risk of ASD in children. A Swedish longitudinal study published that same year in JAMA Psychiatry found that fetal exposure to maternal infection was linked to a greater risk of an autism diagnosis in children. “For many reasons, you do not want to get very sick — from COVID-19 or any other type of infection — when you are pregnant.”

5. How Can a Caregiver Prepare Their Loved One With Autism for the COVID-19 Vaccine? 

Many people with ASD have already faced isolation, changes to their routines, and disruptions to their therapeutic care and education, says Banks. The process of getting a vaccination poses an added challenge, especially since many times the shots aren’t being given in a typical doctor’s office setting. Depending on where you live, getting a vaccine might mean going to a large stadium or convention center.

For some people with autism, experiences that are outside a typical daily routine can be upsetting, Banks explains. “They’ll need to be introduced to the idea that they’re going to drive somewhere in their car, roll down their window, and somebody in medical equipment gear — a face mask, shield, and gloves — is going to give them an inoculation.”

Hendren’s advice: “Depending on the person with ASD’s ability to understand and express language, caregivers should try to explain the reason for the shot (for example, “It’s to keep you safe“); what will happen, step-by-step; and perhaps even do a practice run with the person with ASD — with the caregiver providing the example of what to expect.”

The Autism Society of America has published visual explainers on its website that may be received and understood well by someone with autism. You can download them and show them to your loved one in preparation for COVID-19 vaccines, testing, and more.