We Still Need the Mask

While We Remain Misunderstood the Mask Keeps Us Safe

I’m sure like me you’ve seen numerous posts about the benefits of unmasking on social media. It has been talked about repeatedly, in books such as the often controversial Unmasking Autism by Dr. Devin Price. It is still a hot button topic in many neurodivergent spaces. But rarely are the dangers of unmasking discussed in spaces occupied by those with significant privilege. I am guilty of not always thinking about it this way, too. I want to lead an authentic, completely unmasked life, but I can understand why, in “this economy,” it can be dangerous to unmask when interacting with authority figures.

For those of you who don’t know, unmasking is the removal of constraints that we apply to ourselves, or that are forced upon us by social expectations to hide our autistic or ‘less desirable’ neurodivergent traits. In contrast, masking is a means of suppressing one’s instincts in order to remain palatable to greater society.

Because of the privilege that I have in the world, as a white female presenting individual, I’m rarely confronted with these dangers, but that recently changed, and we’re going to talk about it. Donning the armor of the mask is becoming more necessary each day, as we fight to survive in the world among surveillance and division that has not been seen during most of our lifetimes. As such it begs the questions, what are the privileges that I have and do those still stand if I unmask?

The ability to mask is often what creates dividing lines among autistics on the greater spectrum. It is what reinforces the concept of functioning labels. It is the defining difference between a “Level 1” and the other levels as prescribed by the American Medical establishment. The want to unmask is real. The desire to create an identity for ourselves, to figure out who we are when we feel that we have been denied this opportunity our whole lives, is tempting. But is removing that armor safe? Are there limits to these ideals of self-expression, given the current climate we are facing? And how does taking up space online with the talk of unmasking harm our greater community?

*The following are my experiences shared anecdotally, and are not meant to reflect the experiences of any other neurodivergent individuals. And an activation warning that the following contains depictions of medical trauma and interaction with law enforcement*.

I have many privileged aspects to my identity. I am white, highly educated, I am slight in stature, I present as female, and I am employed. However, the need to mask is still very real to me, and I was reminded of this in a more profound way recently.

By sharing this, I do not seek pity; I seek to share my experience as a part of a more nuanced conversation related to masking. It is reductive to simply think that one is either masking or unmasked; there are consequences and benefits of both. And increasingly, for safety, this nuance must be discussed. The need for the armor of masking is real. The need for community and advocacy is real. We need each other more than ever before. So here’s my story.

I had a headache, nausea, vomiting, and dizziness for several days recently. I finally decided to seek medical attention, as my efforts seemed to be failing. I haven’t had much luck with establishing care with a primary care doctor. So I took the first available appointment at a clinic with good reviews.​

I had never met this doctor before, and since it was a same-day appointment, I doubt this physician had the opportunity to thoroughly review my chart. I arrived and went through the normal motions of a doctor’s appointment. Then the doctor came in and began asking me about my symptoms. Since I was in considerable pain and my photosensitivity was out of control, I was wearing sunglasses, and I read my symptoms from a list on my phone. The doctor listened. One of the symptoms I listed was a notable increase in the frequency and duration of feelings of emotional dysregulation. She asked me what I meant by that, and here is where I made a big mistake.

I was in pain, I thought I was safe, so I let the mask slip, and I explained what I meant and what meltdowns can look like for me, and more specifically, what they had looked like recently, which included a brief description of involuntary self-injurious behaviors in the form of hitting my head with open hands.

At the mere mention of self-injury, the doctor cut me off and stated that she was going to have me transferred to the hospital for psychiatric evaluation, because I was hurting myself. I was stunned, and I froze. Due to difficulty with self-expression in medical spaces, I don’t often go to appointments alone, but there was no one available to go with me on this particular day.

The doctor asked if I had been admitted psychiatrically previously, again not thinking, I answered the question honestly, it was in my history, but it had been 14 years since it was a concern. She then said that she was going to call the hospital and prepare to have me transferred, and that someone would be coming to get me. I didn’t know what to do or say. I just stared at her blankly and started to cry. She patted my shoulder and told me it would be okay and that I was doing the right thing, and left the room. All of this took place in the span of about a minute and 45 seconds.

She came back a couple of minutes later and said that “they” were coming to get me. She didn’t tell me who she had called or who would be transporting me. I figured since the hospital was close by, maybe there was some sort of coordinated shuttle. I was not at all prepared for what would happen next.

A few minutes later, there was another knock at the door. This time it was not the doctor, it was two armed police officers who came to search me and to facilitate my transfer to an ambulance. I was completely frozen; my brain was not processing what was happening. I was in so much pain and so frightened that all I could do was comply with the verbal instructions given. My bag was emptied and searched, and my pockets were turned out. I was placed against a wall and patted down, searched to see if I was a threat. Then I was escorted through the crowded waiting room and lobby to the exit with each officer holding each of my shoulders. I was not and could not process what was happening.

I was walked to a waiting ambulance (there was also a fire truck present, and it started to become clear that the doctor had simply called 911). The paramedics seemed confused as I walked up to the side of the ambulance, and I was instructed to climb the steps to get in by the police officers. I was placed in a seat next to the gurney and instructed to buckle the safety belt. At this time, the police were debriefing with the paramedics, and I overheard the police state that the doctor called and reported that I was an imminent danger to myself due to voluntary head banging on the walls and floor. This is categorically untrue; at no point did I state any of these things, and there is a transcript (the only time I will be grateful for AI) that proved it. But I didn’t have access to it at that time, and all I could do was try to interrupt.

I was so stunned and confused that I simply raised my hand and attempted to gain the attention of the paramedic. They looked over pityingly and asked what I needed. I stated that I had not been hitting myself voluntarily, and that I had only hit myself with my hands, and not against anything else. They acknowledged what I said and continued talking to each other. The next thing I knew, we were off, speeding to the hospital with the sirens wailing; the entire trip took all of 3 minutes.​

I was met in the ambulance bay by 2 nurses, who looked even more confused than the paramedics did, as they watched me step out of the ambulance and walk toward them, no gurney, no IV, just me walking, ironically wearing a shirt that reads “All Brains Are Beautiful” (from the beloved PlaySpark collection). The nurses spoke to me gently and confirmed my identity on the way to the room. They got me onto a bed and immediately started taking vitals, an EKG, and an IV port.

This is where I fully acknowledge that my privilege as a smaller, white, highly educated, and female-presenting human worked in my favor. And I am abundantly aware that without any of those factors, this could have ended very differently.

The nurses asked how I got there and what happened. I relayed the story of my interaction with the doctor, just as I have done here. They looked shocked and apologized that I had gone through that, and told me they would do everything they could to help me while I was in their care. By this point, I was shaking violently, terrified of what was coming. I am still working through the trauma that I experienced when previously hospitalized, many years ago. I had no idea what would happen, and I was alone, feeling ill-equipped to advocate for myself. I felt resigned to the fact that I was probably going to be admitted for a 72-hour hold, even though I just had a headache. I regretted attempting to explain a fairly typical meltdown behavior to a medical professional.

But what I told the nurses had worked, and an ER doctor came by and assured me that they did not see any reason to hold me and that they did not deem me a threat to myself or others. Instead, they offered me a migraine medication cocktail and fluids because I was severely dehydrated. Luckily, I was able to call my mom, and she came to get me. All told, the ordeal took about 6 hours. But I am still navigating the fear and increased hypervigilance (as someone with PTSD, I didn’t know I could become more hypervigilant, but here we are). This occurred only 2 weeks ago as I write this.

If I had the strength and forethought to maintain my mask, if I had not inherently trusted this doctor, simply because they were a doctor, I would have been able to keep myself safe. If I hadn’t acknowledged my meltdowns and even the fact that I am autistic, I would likely not have had to interact with law enforcement. I would not have been transported in such a dramatic and costly way, and I wouldn’t have a renewed fear for my freedom.

The mask we wear is unfair; it is placed upon us. If we are “privileged” enough to be able to learn to wear it, when we are young, it is reinforced at every turn as we grow up. Our masks are celebrated as we lose touch with our identity. This is a travesty, and it has severe consequences for our mental health. But those consequences and their severity must be measured against the dangers of not wearing the mask, the dangers to our very lives, freedom, and existence that come when we unmask in the wrong place and at the wrong time.

So I hope when next you see a buzzword filled post about the importance of unmasking and all it entails, you will pause and think about the other angles, and the armor-like safety that is provided by the privilege of being able to don the mask.