This is a guest opinion column

In a recent organization wide email, Children’s of Alabama’s leadership shared the hospital’s next big step towards a “return to normal” outlining the discontinuation of a 3-year-long universal masking mandate. Though masks have served an important role during the COVID-19 pandemic, many providers have shared mutual feelings of excitement that unmasking will allow them to finally feel fully seen by their patients, families, and co-workers.

While masking is now becoming a memory of past events, the concept of “masking” and “unmasking” is not new to the neurodivergent community. Masking, also known as camouflaging, is considered a social practice where individuals hide certain traits or behaviors of one’s true self that may be considered non-neurotypical, to meet social expectations and to avoid stigma. This may look like suppressing behaviors such as ‘stimming’ that helps with sensory regulation, internalizing different feelings or moods, scripting conversations for interactions with others, and more.

In 2020, Michele suffered from a stroke, and since then has used her story to further push the boundaries for inclusion, particularly for those who are neurodivergent or have invisible disabilities.

From Michele: I found myself faced with the fallouts of having a stroke and hemifacial spasm. The mask, a simple item, meant to protect me and my patients from COVID-19 became part of my defense mechanism, my refuge, allowing me to hide the asymmetry in my face, the facial drop and constant twitching. And now, without the physical mask, I find myself creating an invisible one, in an attempt to hide my disability. Some days, a part of me feels especially burdened, and unwilling to let go of my own self-judgement. Recently, a friend shared a viral video clip of Lewis Capaldi, a singer who had Tourette induced tics that prohibited him from singing. I watched with tears streaming down my face as the public helped him finish his song.

The burden of having a disability, whether visible or not, is real and can impact anyone across the age spectrum, diagnosis, social economic class, gender, or nationality.

This burden is further magnified when they feel isolated, or when their neurodivergent behavior is stigmatized. We need to not only increase our society’s awareness surrounding these seemingly atypical movements or behaviors but examine the negative effects that masking has on neurodivergent individuals, and their families. In a self-reported study (Miller D, Rees J, Pearson A. “Masking Is Life”: Experiences of Masking in Autistic and Nonautistic Adults), autistic adults commonly report huge emotional and physical tolls related to masking including feelings of burnout, identity and relational issues, and increased suicidality.

In the healthcare setting, for our autistic patients and others with sensory processing challenges, attempting to mask or redirect behaviors that help with coping can magnify feelings of stress and anxiety which can negatively influence medical assessment and treatment. Furthermore, they often have additional barriers related to communication, comprehension, an insistence on sameness and routine, all of which may be heightened when they are feeling unwell. Additionally, caregivers of neurodivergent children may experience their own feelings of stress and anxiety revolving around societal reactions to their child’s responses and behaviors (Challenges of the Caregivers in Managing a Child with Autism Spectrum Disorder- A Qualitative Analysis). When paired with challenging non-accommodating encounters, these factors may create barriers to appropriate care (Factors influencing oral health behaviours, access and delivery of dental care for autistic children and adolescents: A mixed-methods systematic review).

As health care providers, we need to alleviate the pressure that our patients might feel in trying to mask their differences. This is of utmost importance during a period of illness when stress and anxiety is bound to be high. By promoting awareness of sensory specific needs of our patients, and providing training opportunities to medical staff, we equip them with the knowledge and skillset necessary to appropriately triage, treat and manage a patient who might be having a sensory overload while seeking medical help for their acute illness. For instance, a child who is easily overwhelmed by loud noises and have proprioceptive defensiveness might cup his or her ears and bounce repeatedly on the exam table. Instead of asking the child to be quiet, and to stop bouncing, the physician will instead offer a noise cancelling headphone, and incorporate the ‘bounciness’ into their physical exam routine.

By increasing knowledge and the availability of sensory resources (for instance, headphones, fidget tools or mobile sensory stations), the medical staff is positioned to be more in tune with the needs and baseline behaviors of their patients, and therefore better equipped to create an environment where those needs and behaviors are accepted and embraced. When patients feel empowered to unmask and share their true self, we are gifted with the opportunity to develop a focused care plans through a strengths-based lens. The same is also true for encounters that might happen in our schools, and in our public places such as sports arenas, museums, and zoos.

As a community, we need to open our minds and our hearts. Unless we start embracing everyone for who they are, whether they conform to what we perceive as societal norm or not, we will never have true inclusion. We must create an environment that is judgement free, that allows for everyone to be the best versions of themselves. For those of us with a disability, we need to embrace our own limitations, be vulnerable, be ready to forgive ourselves and to let go of any self-judgements.

A family member said it best during a recent visit to our hospital. “Instead of assuming that our son must respond as a neurotypical child, the staff chose to look deeper. They saw that he loved to push, so they gave him the role of pushing his bed to surgery. They saw that his love for opening and closing doors was a soothing behavior and not a misbehavior. The staff was prepared in advance to better understand his needs, and it made all the difference.”

Let us all be our authentic selves and leave the mask behind once and for all.

Michele Kong, MD, MBA is the co-founder of KultureCity, the world’s leading non-profit in sensory accessibility and inclusion. She is a Professor of Pediatrics at The University of Alabama at Birmingham and an intensivist at Children’s of Alabama. Chelsea Brown, CCLS is a Certified Child Life Specialist at Children’s of Alabama with more than 10 years of experience.