COVID-19 and Autism: How to Be Prepared

April 27, 2020

Across the globe, people are considering what they might do if a family member contracts COVID-19. If that family member has autism, the thought can be overwhelming. Communication difficulties, sensory sensitivities, and an unknown environment and procedures make emergency medical care, hospitalization, or even quarantine especially challenging. Since the individual is presumably not feeling well, the challenges are compounded.

The CDC offers the following recommendations specific to COVID-19 treatment.

Feeling Sick

If you think your loved one has COVID-19 symptoms of fever, cough, and shortness of breath, call their regular physician. He or she may direct you to a testing location or simply to quarantine at home. Since there is no treatment to be administered, the CDC recommends staying at home unless the symptoms cannot be managed there.

Quarantining at Home

If symptoms are mild and wouldn’t have brought you to the ER six months ago, your doctor will likely recommend that the individual with autism and family stay home. General recommendations include rest, isolation, plenty of fluids, and over-the-counter medicine as needed to treat symptoms. Our article on in-home suggestions for parents during quarantine may be helpful at this challenging time, as well as other resources in the “Tips for Supporting Individuals” section of www.autismnj.org/coronavirus.

Visiting the Emergency Room

Indicators that you should go to the emergency room include: strong chest pain, inability to catch one’s breath, dehydration from not holding fluids, and a high fever accompanied by shaking. If you are directed to go to the ER, alert them when you are on your way that the patient has autism as well as suspected coronavirus. Some hospitals usher patients with special needs into a quieter waiting area or separate room, but this may not be possible given the increased demands placed on hospitals during the crisis.

Be Prepared

We suggest you prepare the following now, prior to seeking medical attention for any illness that could require hospitalization.

Paperwork to Bring

  • COVID-19 Disability Form: Created by Michelle Ballan, Ph.D. and Christina Perri of Stony Brook with input from ER physicians and families, this form was designed to reduce healthcare barriers for patients with IDD.  Having this form, and the accompanying documents noted on page 2 of the form, will help to alert ER physicians to necessary and proper communication with the patient with IDD and his/her needs and wishes.
  • Another helpful form is My Health Passport for Hospital/Clinic Visits. Use whichever bests suits your needs or both.

Tip:  Bring enough copies for ER staff and additional nurses or physicians (including those involved in ongoing follow-up care or hospitalization) and offer one for the patient’s health records.  Save the file on your phone for easy access.

Other items to bring: Communication device and charger, headphones, snacks (if allowed/tolerated), a few favorite items (if allowed)

What to Expect

The following explanations may help prepare an individual with ASD and intellectual disability for a visit to the ER.

  • There might be bright lights, loud and unfamiliar sounds, and many people.
  • Some people are also sick.
  • Some people are doctors and nurses to help them.
  • Doctors and nurses must treat each person so there may be a long wait.
  • Some people may come in with serious injuries and skip to the front of the line.
  • You can also describe appropriate waiting behavior such as sitting or walking at a distance from others and occupying yourselves.
  • Ask the medical staff to explain each procedure before they do it, if possible

Patient Rights in Healthcare Settings

Individuals who need communication tools and supports face greater risk of discrimination and isolation during hospitalization. Individuals with ASD have civil rights to access their communication supports which do not go away during an emergency, in quarantine, or in the hospital. For individuals who require the support of a caregiver during hospitalization, recent guidance by the New Jersey Department of Health indicates that hospitals must allow a designated support person to stay with the individual during the length of their stay.

Healthcare facilities are required to provide supports and services to ensure effective and clear communication 24 hours a day for patients who have hearing, vision, and/or speech impairments. Hospitals cannot discriminate, exclude, or treat patients differently because of their disability.

If you have concerns about discrimination or denial of rights, you may wish to share with medical staff the recent guidance from the U.S. Department of Health and Human Services entitled, Civil Rights, HIPAA, and the Coronavirus Disease 2019 (COVID-19) which states that “persons with disabilities should not be denied medical care on the basis of stereotypes, assessments of quality of life, or judgments about a person’s relative ‘worth’ based on the presence or absence of disabilities.”

If you have concerns of discrimination in access to medical care or would like to report a violation, NJ’s federally-funded protection and advocacy organization, Disability Rights New Jersey, can be reached at advocate@DRNJ.org or 800.922.7233.


Experience Our Power of Connection

Autism New Jersey is following recommendations from the CDC and state Department of Health and is implementing telework and remote meetings for its employees to help reduce the community spread of the coronavirus.

During this time, our 800.4.AUTISM Helpline will remain open. Please leave a message with specific dates and times you are available for a call-back, or email information@autismnj.org.  You can also message us via our website, and we’ll aim to reply promptly.

We remain focused on our mission to be a resource for the autism community. With a fluid situation and great uncertainty, we’ll share relevant, accurate information as it becomes available. We encourage you to regularly visit our central hub of coronavirus resources for the autism community.