Helping people with autism spectrum disorder manage masks and COVID-19 tests

Robyn Thom, MD

Contributor

The COVID-19 pandemic has presented many new challenges for people with autism spectrum disorder (ASD). Features of ASD, including impaired social and communication skills, repetitive behaviors, insistence on sameness, and especially sensory intolerances, make adapting to wearing face masks and the experience of a COVID-19 test particularly challenging.

Challenges of wearing face masks with ASD

Many people with ASD are highly sensitive to touch, and the face can be especially so. Wearing a face mask involves many unpleasant sensations. On the surface, there’s the scratchy texture of fabric, tight contact where the top of the mask meets the skin, and the tug of elastic on the ears. Sensations under the mask are no more pleasant and include the warm, damp smell of recycled air. In addition, the sensation of breathing in and exhaling air through the nose can feel restrictive, leading to concern and worry for many individuals with ASD. While wearing a mask is uncomfortable at best, these unpleasant sensory experiences can be intensely magnified in people with ASD.

In addition to these sensory challenges, face masks also create new social communication challenges. Autism spectrum disorder can include poor visual perception skills, making the odds of accurately reading another person’s facial expression beneath a mask, from a socially appropriate distance, more difficult than usual. Moreover, when viewing another person’s face while they are wearing a face mask, the eyes are the primary area of the face that is visible. Individuals with ASD often have difficulty making eye contact, adding yet another hurdle for them in the social-communication realm. These factors can lead to miscommunication and frustration. Because masks muffle voices, verbal communication also becomes more difficult. Fortunately, there are several strategies that can make wearing a face mask more bearable.

What to do?

  • Demonstrate using the face mask on a preferred object or person, such as a stuffed animal, a doll, or a family member.
  • Allow the person with ASD to choose among different types of fabric face masks to find one that is most comfortable.
  • Start by practicing wearing the face mask for short durations of time, allowing for breaks when needed.
  • Plan initial outings in low-demand environments that are quiet and calm, so that the individual can experience success wearing the face mask.
  • Use a printed photo or digital photo of the individual wearing a face mask as a visual cue to wear the mask before outings. The photo can be stored close to the door or on a tablet that is easily accessible.
  • Chew gum or suck on a hard candy while wearing a mask, for distraction and to improve the smell of recycled air beneath the mask.
  • Some medical settings may have transparent face masks. These masks make the mouth visible. Susan Muller-Hershon, American Sign Language/English interpreter at Massachusetts General Hospital, notes that transparent masks can be helpful for better communication.

The challenges of a COVID-19 nasopharyngeal or throat swab test

Testing for COVID-19 requires a nasopharyngeal (through the nose) and/or oropharyngeal (through the mouth) test using a cotton swab. These tests can cause distress for people with ASD due to the associated discomfort, unfamiliarity with the procedure, and change of routine. The use of visual aids to help prepare a person with ASD, and strategically selecting a comfortable testing environment, can help with a successful procedure and reduce anxiety.

What to do?

  • Prepare for a COVID-19 test using visual supports:
    • Review a social story. Social stories are a sequence of pictures and sentences to help prepare for a new experience. Some people with ASD benefit from more detailed social stories, while others do better with simpler instructions. It is important to consider which approach will work best when selecting the social story. Both detailed and simple social stories, as well as a COVID-19 testing toolkit introduction, are available.
    • Watch a video. Some individuals with ASD will benefit from watching a video prior to being tested. The New England Journal of Medicine’s nasopharyngeal test video includes a simple video and illustration.
  • Consider options for where the test will happen: Discuss local testing site options with your primary care physician or pediatrician to determine the optimal test environment. Some people will do best being tested in an indoor medical clinic because it is a more familiar medical setting. Others may do better with an outdoor drive-through testing site because they will feel more comfortable being able to wait in the car. Drive-through sites may also offer the advantage of allowing the patient to hold a comforting object that would not be permitted in an indoor clinic for infection control reasons.
  • When testing isn’t possible: Some individuals with ASD may not be able to tolerate a COVID-19 test, even after ample preparation. If this is the case, it is very important to continue to speak with the primary care physician or pediatrician about the person’s symptoms, and whether additional medical care is needed.

It is important for parents and healthcare providers to understand why adjusting to wearing face masks and enduring a COVID-19 test can be especially challenging for individuals with ASD. There are a number of strategies, including advanced preparation using visual aids, gradual practice, and modifying the sensory experience, as well as online resources, that can be used to help individuals with ASD and their caregivers rise to meet these challenges.

Comments:

  1. Aileen Hammar

    Is there any research happening around use of clear face shields (attached to hats or with Velcro strap) vs cloth masks? They are preferable in terms of expressive and receptive speech, eye glasses, hearing aids, and social cues. Compliance is likely to be better and they’re washable/reusable. We know there are limits to hand made cloth masks. As a teacher (dyslexia intervention, deaf education) we need a solution.

    • Karen Turner

      Hi Aileen, There is a lot of innovation currently happening with clear masks and face shields. On thing I’ve learned is that masks must have a certain level of filtration to be effective and safe. For example, droplets may be forced out or pulled in around the sides of an entirely plastic mask/face shield, making the wearer and those around him/her at higher risk of exposure. I am hopeful we will see more options available very soon, and I can’t agree more with you that a better solution is needed.

  2. Carlos piniero

    My son is non verbal it will be difficult, I took him out of the program in mid March. I’m not really sure if I will be able to send him back. My is 44years old he is very happy in staying home all day. I am worried of how they going to handle this pandemic .

    • Karen Turner

      Hi Carlos, Thank you for sharing about you and your son. I am so glad to hear he is happy and well. You are not alone in your worries about how programs will adapt. Staff at programs I have interacted with have been working hard to offer support and ongoing programming virtually, and are also so dedicated to helping those without access to the Internet. I encourage you to stay in touch and communicate your concerns with the staff at your son’s program as you decide what is best for you and your son.

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