COVID-19 Guidance for People Living with Autism

AC Medical Advisory Board Recommendations Regarding COVID-19 for Persons with Autism

High-Level Summary:

(Full article follows this bullet list.)

  • Autism by itself is not a known risk factor for contracting COVID-19 or developing severe COVID‑19 disease.
  • Autism treatment does not increase a person’s risk for contracting COVID‑19 or developing severe COVID-19 disease.
  • The Medical Advisory Board strongly encourages persons with autism over the age of 16 years and their families to be vaccinated for COVID-19 when they become eligible. (See below section for additional information regarding the vaccine.)
    • SPECIAL NOTE ON CHILDREN BELOW THE AGE OF 16 YEARS: Studies of the COVID-19 vaccines in children are still in progress. Guidance on children will not be available until these studies have been completed and reviewed by the FDA.
  • Learn how states are prioritizing who will get the COVID-19 vaccine. The first step to getting your vaccination is finding out when you will be eligible to receive it in accordance with your state’s guidelines.
  • Obtain information about COVID-19 and the COVID-19 vaccine from reliable sources, including the Centers for Disease Control, Health Canada, the World Health Organization, state or provincial health boards, and Autism Citizen. Please be careful not to respond to information on the internet that may be untrustworthy, or that may try to sell you bogus advice, treatments, or vaccines. The Office of Inspector General at the US Department of Health and Human Services has issued a Scam Alert Notification with information on how to protect yourself.
  • People with autism who are over 60, and those of any age who have coexisting health conditions, such as heart disease, diabetes, immune suppression, or lung disease, should consider themselves in the higher-risk population for developing severe COVID-19, as described by the CDC
  • Nobody is immune from COVID-19. Persons of all ages, including infants, children, teens, young and middle-aged adults, and the elderly, are at risk for contracting COVID‑19, including a risk for developing severe COVID-19 disease.
  • Fear of COVID‑19 should not stop you from seeking necessary medical care, but call your physician’s office first so that they can recommend how and where to be treated.
  • If you are experiencing symptoms that are concerning for any another issue that could be harmful to you if not addressed promptly, please contact your physician’s office, or, if there is an emergency, call 911 or the number for emergency services in your community.
  • The only way to avoid and defeat COVID-19 is to prevent it from spreading. Everyone should follow CDC guidance, as well as federal, state, and local governmental guidance to stay safe at home, to leave home only if necessary, to wear a mask, to avoid large gatherings as defined by your state and local health department, to practice social distancing (keeping space between yourself and others), to wash your hands often, and to avoid non-essential travel.

An issue of great concern to our members is whether autism is considered a risk factor for contracting or developing severe COVID-19. Additional concern has also been raised as to whether or not the vaccine is safe to receive for individuals with autism.

Autism and Risk Factors for the COVID-19 Vaccine

  • The Medical Advisory Board strongly encourages persons with autism over the age of 16 years and their families to be vaccinated for COVID-19 when they become eligible according to federal, state, and local guidelines.
    • SPECIAL NOTE ON CHILDREN BELOW THE AGE OF 16 YEARS: Studies of the COVID-19 vaccines in children are still in progress. Guidance on children will not be available until these studies have been completed and reviewed by the FDA.
  • The Centers for Disease Control have recommended vaccine distribution and administration in several phases (CDC’s COVID-19 Vaccine Rollout Recommendations | CDC). For the general public, the chief considerations are age and whether a person has underlying medical conditions that increase their risk for severe COVID-19 disease.
  • As of February 2021, there is no evidence in the medical literature that autism on its own is a risk factor for severe COVID-19 illness; however, adults with autism who have other risk factors, including age and other systemic or neurologic conditions, as described on the CDC website (Certain Medical Conditions and Risk for Severe COVID-19 Illness | CDC), may have a higher risk that places them in Phase 1c for vaccination. Because vaccine distribution is determined by guidelines in each state, and sometimes by county and city guidelines, we encourage our members to check with their physicians or local health authorities if they have questions regarding their risk factors and the vaccination phase that they belong to.
  • The benefits of COVID-19 vaccinations for individuals and for the public far outweigh the risks.
  • The FDA guidance and published information for both the Pfizer/BioN Tech (Pfizer-BioNTech COVID-19 Vaccine | FDA) and the Moderna (Moderna COVID-19 Vaccine | FDA) vaccines list no risk factors for adverse events except for persons who are already known to have an adverse reaction to the vaccine or to any ingredients in the vaccine.
    • If you have had reactions to vaccines in the past, please consult your physician about your individual safety for the COVID-19 vaccine.
  • Neither autism nor any treatment therefor increases the risk of adverse reactions to the COVID-19 vaccines.
  • The vaccines do not contain the COVID-19 virus or virus particles.
  • Some individuals have reported experiencing side effects after receiving the vaccine, particularly after the second dose. Please visit the CDC for information on what to expect after receiving the vaccine. https://www.cdc.gov/coronavirus/2019-ncov/vaccines/expect/after.html
  • Vaccination is not considered complete or effective until a person has received the number of recommended doses. Currently, both the Pfizer/BioN Tech and the Moderna vaccines require 2 doses within a time frame of approximately 3 to 4 weeks.
  • Learn how states are prioritizing who will get the COVID-19 vaccine. The first step to getting your vaccination is finding out when you will be eligible to receive it in accordance with your state’s guidelines.
  • Although COVID-19 vaccination prevents development of COVID-19 infection, it is not yet known whether it prevents vaccinated persons from carrying or transmitting COVID-19 to others.
  • As such, the CDC recommends that everyone, including persons who have received a COVID-19 vaccination, continue to wear appropriate masks or face coverings, and participate in federal, state, and local guidance for measures to prevent the spread of COVID-19.
  • Obtain information about COVID-19 and the COVID-19 vaccine from reliable sources, including the Centers for Disease Control, Health Canada, the World Health Organization, state or provincial health boards, and the Autism Citizen. Please be careful not to respond to information on the internet that may be untrustworthy, or that may try to sell you bogus advice, treatments, or vaccines. The Office of Inspector General at the US Department of Health and Human Services has issued a Scam Alert Notification with information on how to protect yourself.

Autism and Risk Factors for COVID-19

After a review of the published medical literature, the Chair and Vice-Chair of the AC Medical Advisory Board, state that autism by itself is not been mentioned as a specific risk factor for contracting or developing severe COVID-19 in adults or children.

However, many persons of all ages with autism have coexisting health conditions, and they should consider themselves in the higher-risk population, as described by the CDC (Certain Medical Conditions and Risk for Severe COVID-19 Illness | CDC), which includes older adults or those of any age with serious long-term health problems, such as heart disease, diabetes, or lung disease, as well as other ongoing serious health conditions. Individuals with other health conditions who have questions regarding their risk factors for severe COVID-19 disease should check with their physicians.

What Does “Severe COVID-19 Disease” Mean?

Nearly all patients with severe COVID-19 have had pneumonia, and many have then developed difficulty breathing (acute respiratory distress syndrome (ARDS)), which requires insertion of a breathing tube and support from a ventilator and treatment in an ICU. Many of the patients also experience other significant complications, including very low blood pressure requiring treatment (shock), abnormal blood clotting, and effects on the function of the liver and kidneys.

What Should Persons with Autism and Their Families Know about COVID-19?

  • Autism by itself has not been identified as a risk factor for severe COVID-19.
  • Persons with Autism Spectrum Disorder (ASD) should consider themselves at high risk for severe COVID-19, but not because they have ASD. Persons with ASD are at risk because they are over age 60 years, and many have coexisting conditions, such as hypertension, diabetes, cardiovascular disease, and other conditions that can make it more difficult to survive the viral pneumonia, ARDS, and complications of critical illness that are seen in severe COVID-19 disease.
  • With the exception that infants below the age of 1 year are at an increased risk of severe disease, the risk factors for severe COVID-19 in children are uncertain. The medical literature shows that children are either less likely to contract COVID-19, or that they generally have milder disease. The American Academy of Pediatrics offers guidance at their Healthy Children website.
  • Autism treatment does not increase a person’s risk for contracting COVID-19 or developing severe COVID-19 disease.
  • COVID-19 does not increase a person’s risk of developing a shunt infection.
  • Nasal swab testing for COVID-19 is safe for an individual with autism, though it may be uncomfortable. If patients have any concern about potential risk, particularly if there are other underlying neurological or systemic conditions, they should consult their doctor prior to testing.
  • Many persons of all ages with autism have coexisting health conditions, and those individuals should consider themselves in the higher-risk population, as described by the CDC, which includes older adults or those of any age with serious long-term health problems, such as heart disease, diabetes, or lung disease, as well as other ongoing serious health conditions.
  • Because severe COVID-19 primarily affects the lungs, persons with lung disease or medical conditions that can affect breathing should be cautious. Lung disease includes asthma, COPD, emphysema, the need for supplemental oxygen, the need for chronic ventilator support, the presence of a tracheostomy, as well as other lung disorders.
  • Persons with autism of any age can try to estimate their risk for severe COVID-19 disease by assessing whether they have other chronic health conditions, as well as the nature of their health conditions.
  • If you are in doubt or unsure about your risk category, we recommend that you follow CDC guidance, as well as federal, state, and local governmental guidance to stay safe at home, to leave home only if necessary, to wear a mask when outside of your home, to avoid large gatherings as defined by your state and local health department, to practice social distancing (keeping space between yourself and others), to wash your hands often, and to avoid non-essential travel.

Recommendations for the Autism Community At Large

  • The Medical Advisory Board strongly encourages persons with autism over the age of 16 years and their families to be vaccinated for COVID-19 when they become eligible according to federal, state, and local guidelines.
  • The only way to avoid and defeat COVID-19 is to prevent it from spreading. Everyone should follow CDC guidance, as well as federal, state, and local governmental guidelines.
  • Avoid travel to hospitals, clinics, or physician offices to prevent exposure to COVID-19. If you have a scheduled appointment with your physician for a routine visit that could be safely delayed, we recommend you communicate with your physician’s staff to see if the physician agrees that your appointment can be safely delayed or conducted as a Tele-Med appointment.
  • Do not let fear of COVID-19 keep you from seeking necessary care for your autism. If you are experiencing symptoms that are concerning for another issue that could be harmful to you if not addressed promptly, please contact your physician’s office, or, if there is an emergency, call 911 or emergency services in your community.
  • Obtain information about COVID-19 and the COVID-19 vaccine from reliable resources, including the Centers for Disease Control, Health Canada, the World Health Organization, state or provincial health boards, and Autism Citizen. Please be careful not to respond to information on the internet that may be untrustworthy, or that may try to sell you bogus advice, treatments, or vaccines for COVID-19 (i.e., scams).
  • We have seen state and local governments reverse and reinstate stay at home orders and restrictions on public gatherings as they respond to changing transmission and hospital admission rates of COVID-19 in their jurisdictions. This will continue for the foreseeable future.
  • The Medical Advisory Board advises the public that even when policies and restrictions may be eased, the risk of COVID-19 spread and infection will continue to be present. Nobody is immune from COVID-19. Therefore, everybody should monitor guidance from the CDC and federal, state, and local governments so that they can follow the best practices to prevent themselves from becoming infected.

Tools for Coping through the Pandemic:  

Helpful Informational Links:

How are States Prioritizing Who Will Get the COVID-19 Vaccine First? by the Kaiser Family Foundation

From the Centers for Disease Control (CDC):

American Epilepsy Society Statement on COVID-19

Spina Bifida Association Information Related to Coronavirus (COVID-19)

Health Canada Coronavirus Disease Information (Government of Canada)

Child Neurology Foundation COVID-19 Response

American Academy of Pediatrics – What You Need to Know About Coronavirus