Individuals with autism and developmental disabilities (DD) are at a higher risk for severe illness and hospitalization from COVID-19 infection than children without DD (Tinker et al. 2021, Karpur et al. 2021). A nation-wide survey found that less than one-half of US parents are likely to have their child receive the COVID-19 vaccine, mainly due to concerns about vaccine safety and side effects (Szilagyi et al. 2021). Additionally, parents of children with autism and other developmental disabilities are generally vaccine hesitant due to a history of misinformation and a disproven and retracted claim that there was a connection between vaccination and autism (Bonsu et al. 2021).
Dr. Lisa H. Shulman is the Interim Director of the Rose F. Kennedy Children’s Evaluation & Rehabilitation Center at Children’s Hospital at Montefiore and is a developmental pediatrician who specializes in the care of children with autism. On November 17th, 2021, Dr. Shulman gave a virtual talk to address parent concerns about vaccinating their children with autism and DD. Below is the transcript from the question-and-answer portion of the talk. (The transcript has been edited for clarity and length. Statistics and information included in the transcript are accurate as of November 17th, 2021, at 7:00 pm EST.)
Moderator: Let’s jump right into the Q&A portion of our talk. To start, what’s the difference between emergency use authorization and FDA approval?
Dr. Shulman: The COVID-19 vaccine for 5- to 11-year-olds now has, by the Food and Drug Administration (FDA), an Emergency Use Authorization (EUA). During a public health emergency like this pandemic, the FDA can issue an EUA to allow use of a vaccine before they’re officially licensed so that they can be used sooner. With the EUA, certain criteria must be met. There needs to be data to show that the vaccine is safe and effective and that the benefits of taking the vaccine outweigh any risks. Vaccines with an EUA continue to go through clinical trials and can only get FDA approval after six months of follow up for serious adverse effects.
Moderator: Are the COVID-19 vaccines safe to take since they were developed so quickly?
Dr. Shulman: Experience developing prior vaccines allowed things to happen quickly when it came to COVID-19 vaccines. Programs pushed aside their other work to focus on COVID-19 vaccines. There were multiple clinical trials being run in parallel, and safety was monitored extremely closely during every phase of development. In fact, this is one of the most highly scrutinized vaccines in history. Shortcuts weren’t taken.
Moderator: Will I get COVID from the COVID-19 vaccine?
Dr. Shulman: No. The COVID-19 vaccines are not live vaccines. They don’t carry any risk of causing COVID-19.
Moderator: Do COVID-19 vaccines alter a person’s DNA?
Dr. Shulman: No. COVID-19 vaccines never go into the nucleus of the cells and never contact DNA
Moderator: Can the COVID-19 vaccine be administered with other vaccines?
Dr. Shulman: Yes. Initially, scientists were saying wait 14 days between vaccines, but now that’s not the case. Even in pediatric offices children may be offered the COVID-19 vaccine soon, along with their other vaccines.
Moderator: After getting a COVID-19 vaccine will I test positive for COVID-19 on a viral test?
Dr. Shulman: No.
Moderator: If I already had COVID-19 should I still get the COVID-19 vaccine?
Dr. Shulman: Yes, even people who had COVID-19 naturally should still get the vaccine. The vaccine creates an immunity that’s more robust than natural immunity.
Moderator: Does the vaccine affect future fertility or having a healthy baby one day?
Dr. Shulman: No. What’s interesting about this question is that it has appeared regarding vaccines across history, like the smallpox vaccine. People were saying it was not safe and would affect fertility. It’s a very scary allegation. Understandably, it would leave parents feeling very concerned about getting their child vaccinated. But there is literally no evidence, across billions of vaccinations, that COVID-19 vaccinations would affect future fertility. The American College of Obstetricians and Gynecologists recommends vaccination for all eligible people who may consider future pregnancy.
Moderator: Do we know how long the vaccine offers protection against COVID-19?
Dr. Shulman: We are now needing boosters and there’s a very good chance that COVID-19 vaccination will follow the pattern of flu vaccines and require future boosters.
Moderator: Will my child get myocarditis from the COVID-19 vaccine?
Dr. Shulman: So, this is the most significant side effect from the COVID-19 vaccine to date. It is very rare. There have been 877 cases confirmed, all in people under 30 years of age, out of 86 million doses of vaccines (Boehmer et al. 2021). That would mean the prevalence rate is 1 out of 100,000. It has never been fatal. Signs include acute chest pain and shortness of breath or palpitations, generally occurring within a few days of the second dose. It’s important to put it in context. COVID-19 infection itself is 16 times more likely to cause myocarditis than the COVID-19 vaccine.
Moderator: Does my child really need the COVID-19 vaccine?
Dr. Shulman: 191 children aged 5 to 11 have died since January 21, 2020, due to COVID-19. It is exciting that COVID-19 is now a vaccine preventable condition for five years and up. There are multiple recommended vaccines for children that have led to almost complete elimination of diseases. If vaccines were not available, studies estimate that the annual death toll of these diseases in children would be: Rubella - 17, Mumps - 39, Measles - 441, Rotavirus - 20 to 60 (Loftus 2021). These numbers are not significantly different from the 191 deaths from COVID-19 that a COVID-19 vaccine can prevent. Vaccines have altered the course of these diseases and made them able to be prevented and, therefore, are recommended.
Moderator: My children are very afraid of needles or have many sensory sensitivities and do not do well with vaccines. How can they get the COVID-19 vaccination?
Dr. Shulman: The Centers for Disease Control has a social story (https://www.cdc.gov/ncbddd/humandevelopment/COVID-19-Materials-for-People-with-IDD.html) about preparing for, and getting, a COVID-19 shot. It is geared toward teens and adults but it’s easy to read to a child.
Moderator: Does being on certain medications, like a controlled medication, make getting the vaccine dangerous?
Dr. Shulman: Individuals with the most medical complications, on the most serious medications, were the ones who were offered the vaccine first. They are at the greatest risk of getting sick and greatest likelihood of having a severe outcome if they were to get infected with COVID-19. That’s why the group of individuals with developmental disabilities has had more severe outcomes and greater risk of infection. And so being on medications, to me, means that the child is more at risk from COVID-19 and really needs the vaccine. There is no evidence that controlled substances or other medications would create more of a problem with getting the vaccine.
Moderator: Are children with genetic syndromes, epilepsy, and autism okay to receive the vaccine?
Dr. Shulman: None of these conditions are contraindications for the vaccine. They are not expected to result in increased side effects. Indeed, these children are at greater risk of getting sick from COVID-19 and they have more benefit to be gained from the vaccine than other children. The only real contraindication for the vaccine is allergy to the vaccine or its components, such as polyethylene glycol (a component of MiraLAX).
Moderator: You just mentioned MiraLAX. What about children who have Down syndrome, who may have gastrointestinal issues?
Dr. Shulman: There are very, very few ingredients in the vaccine that one could be allergic to. The only one that’s been identified as allergenic is polyethylene glycol, which is in MiraLAX. This is the good news. If your child has ever been given MiraLAX and hasn’t had an allergic reaction, they’re not allergic to the vaccine.
Moderator: Should parents of children who have cardiac problems be worried about getting their child a COVID-19 vaccine?
Dr. Shulman: Getting a heart complication is 16 times more likely from COVID-19 infection than the vaccine. A child who has an underlying heart problem falls into a high-risk category; if they were to get COVID-19, they would have a greater likelihood of death. Getting the vaccine is a protective action. My very first patient who got vaccinated had a heart transplant. You cannot get more complex than this.
Moderator: What are your recommendations for children who may be nonverbal or may not be able to explain to their parents if their chest hurts?
Dr. Shulman: Nonverbal children show their distress by not eating, drinking, sleeping, or playing. All these signal that they need a physical examination. Always look at your children’s day-to-day behavior to see if it’s changed in some way.
Moderator: If a child has autism and is taking specific medication, can they be vaccinated without any problem?
Dr. Shulman: There’s never a zero chance of a problem. Children with autism, and who have medical problems that need to be treated with medication, are at much greater risk of having a poor outcome from getting COVID-19. They are not at increased risk for vaccine side effects. All the data strongly supports that there’s tremendous benefit in getting the vaccine and very little risk.
Moderator: So, the COVID-19 vaccine is 91% effective. What happens to the 9% who get the vaccine and still get a COVID-19 infection?
Dr. Shulman: The ones who were vaccinated and got COVID-19 anyway had a milder illness than those who had not been vaccinated. People who were unvaccinated and got sick were much more likely to have severe illness, go into the hospital, or have a bad outcome.
Moderator: Some adults felt sick or had some of the side effects when they got the vaccine. Parents want to know: Will their children have those same side effects?
Dr. Shulman: The most common side effect is pain in the arm, and that might be for a couple of days. There might be some small amount of swelling there, possibly low-grade fever, and a couple of children got higher fevers, chills, tiredness, and headaches lasting a couple of days. More with the second vaccine than the first. There were no more serious side effects for this group of 4,600 children in the studies.
Moderator: How many children were in the COVID-19 vaccine trial? Are 4,600 children enough to be able to understand side effects, such as myocarditis?
Dr. Shulman: It’s an emergency measure in a pandemic and it takes six months to get the full FDA approval. 4,600 is not an unusual size. We know everybody would feel better if there were millions of children who had been in a study. What is clear from the trial is that the risks from getting COVID-19 are significantly greater than the risks from the vaccine.
Moderator: What’s the difference between the flu vaccine and the COVID-19 vaccine?
Dr. Shulman: They are vaccines for protection from different infectious agents, different viruses.
The COVID-19 vaccine uses the MRNA technology and is the first FDA approved vaccine using that technology. But both are protective devices against infections that rely on the body’s immune system.
Moderator: Would you like to add anything else?
Dr. Shulman: I want to say one final thing. As doctors, we often don’t talk about our own families; however, I’m a mom, and one of my own kids has significant health issues. I rushed to get a COVID-19 vaccine for my child with health issues the minute she was eligible. I was so worried that she would get sick from a COVID-19 infection and have a poor outcome. I’m a mom first, and I want to end on that note.
Dr. Shulman’s Let’s Talk webinar was made possible because of the VaxFactsDDNY project, hosted by the Rose F. Kennedy University Center for Excellence in Developmental Disabilities (RFK UCEDD) and funded by the New York State Developmental Disabilities Planning Council (NYS DDPC).
Finding Answers: COVID-19 and Vaccination Resources
Rose F. Kennedy Center
Children’s Evaluation and Rehabilitation Center at the Children’s Hospital at Montefiore: COVID-19 Vaccines and Children with Developmental Disabilities: Let’s Talk with Dr. Lisa H. Shulman.
English slide deck, English recording, and Spanish audio
Association of University Centers on Disabilities’ (AUCD)
National Center on Disability in Public Health
New York City Department of Health & Mental Hygiene
Centers for Disease Control and Prevention (CDC)
COVID-19 Vaccines for Children and Teens
Children with Developmental Disabilities
COVID-19 Myocarditis and Pericarditis: What you Need to Know.
Pfizer-BioNTech COVID-19 Vaccine Overview and Safety
CDC Videos on COVID-19 Vaccines and Fertility
Dr. Walters: www.youtube.com/watch?v=KjR1HtUz0so
Dr. Castillo: www.youtube.com/watch?v=awkDkrhpK-8
The ABCs of COVID Vaccines
Getting There: Where To Get Vaccinated
Reminder: Vaccines are free of charge to all people living in the United States, regardless of immigration or health insurance status.
Centers for Disease Control and Prevention (CDC)
Find COVID-19 Vaccines
Accessing a COVID-19 Vaccine If You Are Homebound
Text Zip code to 438829 and locations will be sent to you
National COVID-19 Vaccine Hotline at 1-800-232-0233
National COVID-19 Vaccine Hotline at 1-888-720-7489
and Rite Aid (www.riteaid.com/covid-19/minors), amongst other pharmacies, provide COVID-19 vaccines for 5 to 11-year-olds
Check with your child’s health care provider about scheduling an appointment
Real Talk: Vaccines Don’t Cause Autism or DD
Studies do not support a relationship between the Measles, Mumps, Rubella (MMR) Vaccine and autism or Thimerosal and autism. Please see below for some specific studies.
Dales L, et al. JAMA 2001;285:1183-85
Kaye JA, et al. Brit Med J 2001;322:460-3
Madsen KM, et al. N Engl J Med 2002;347:1477-82
P DeStefano R, et al. Pediatrics 2004;113:259-66
Farrington CP, et al. Vaccine 2001;19:3632-5
Fombonne E, et al. Pediatrics 2001;108:e58
Taylor, B, et al. British Med J 2002;324:393-6
ABOUT THE AUTHORS:
Rachel Passmore, MPH received her Master of Public Health from Columbia University’s Mailman School of Public Health. She is a Project Manager at Albert Einstein College of Medicine, overseeing the day-to-day work of two projects: the CYSHCN Project and VaxFactsDDNY. Ms. Passmore is a former Fulbright-Nehru English Teaching Assistant (Delhi, India) and United States Peace Corps Volunteer (Grenada, West Indies).
Andrea Deisher RN, BSN, MPH received her Master of Public Health from Columbia University's Mailman School of Public Health and Bachelor of Science in Nursing from Liberty University. She is a public health nurse and Senior Research Coordinator at the Rose F. Kennedy Center Children’s Evaluation and Rehabilitation Center at the Children’s Hospital at Montefiore. Her clinical and research interests include increasing the evidence base for interventions for children with autism and healthcare disparities in autism diagnosis and treatment.
Lisa Shulman, MD received her MD from University of Pennsylvania School of Medicine. She completed her Pediatric Residency at the Mount Sinai Medical Center of New York. She is board certified in Pediatrics, Developmental and Behavioral Pediatrics and Neurodevelopment. Dr. Shulman is the interim Director of RFK CERC where she also serves as the Director of autism Services and as an Attending Physician.
Boehmer, T. K., L. Kompaniyets, A. M. Lavery, J. Hsu, J. Y. Ko, H. Yusuf, S. D. Romano, A. V. Gundlapalli, M. E. Oster, and A. M. Harris. 2021. "Association Between COVID-19 and Myocarditis Using Hospital-Based Administrative Data - United States, March 2020-January 2021." MMWR Morb Mortal Wkly Rep 70 (35):1228-1232. doi: 10.15585/mmwr.mm7035e5.
Bonsu, N. E. M., S. S. Mire, L. C. Sahni, L. N. Berry, L. R. Dowell, C. G. Minard, R. M. Cunningham, J. A. Boom, R. G. Voigt, and R. P. Goin-Kochel. 2021. "Understanding Vaccine Hesitancy Among Parents of Children With autism Spectrum Disorder and Parents of Children With Non-autism Developmental Delays." J Child Neurol 36 (10):911-918. doi: 10.1177/08830738211000505.
Karpur, A., V. Vasudevan, A. Shih, and T. Frazier. 2021. "Brief Report: Impact of COVID-19 in Individuals with autism Spectrum Disorders: Analysis of a National Private Claims Insurance Database." J autism Dev Disord:1-7. doi: 10.1007/s10803-021-05100-x.
Loftus, Peter. 2021. "Covid-19 Vaccines and Myocarditis Link Probed by Researchers." The Wall Street Journal, November 7, 2021. https://www.wsj.com/articles/researchers-probe-link-between-covid-19-vaccines-and-myocarditis-11636290002.
Szilagyi, P. G., M. D. Shah, J. R. Delgado, K. Thomas, N. Vizueta, Y. Cui, S. Vangala, R. Shetgiri, and A. Kapteyn. 2021. "Parents' Intentions and Perceptions About COVID-19 Vaccination for Their Children: Results From a National Survey." Pediatrics 148 (4). doi: 10.1542/peds.2021-052335.
Tinker, S. C., M. E. Cogswell, G. Peacock, and A. B. Ryerson. 2021. "Important Considerations for COVID-19 Vaccination of Children With Developmental Disabilities." Pediatrics 148 (4). doi: 10.1542/peds.2021-053190.
ABOUT THE AUTHOR:
David Ervin, BSc, MA, FAAIDD is CEO of Jewish Foundation for Group Homes, a nonprofit supporting people with intellectual and developmental disabilities (IDD) in Maryland and Virginia. With more than 30 years in the field, David has extensive professional experience working in and/or consulting to organizations and governments in the US and abroad. He is a published author and speaks internationally on health and wellness and healthcare for people with IDD and other areas of expertise.
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Read the article here.