Hiding sucks, but sometimes it's the only way
Neuro-different stories | friendships and relationships | Autistic masking | Autistic health
Every week, on the same day, I go to the same coffee shop and sit in the same seat. I get the same latte—oat milk, decaf, and not too hot. I set up my computer in the same way: on a collapsible, angled riser in an attempt to be kinder to my EDS1-afflicted neck, and in hopes to not require carpal tunnel and other corrective surgeries again.
Normally, I’d set my computer up and place the Supernote tablets on the table before ordering coffee at this particular shop. But, upon entering, I noticed a woman in “my” seat, with two large, full totes slung across the table, sprawling over four out of the six seats. My body froze for a moment, lingering at the double doors. My heartbeat throbbed, and upon noticing my internal reaction, I coached myself to take deep, steady breaths. It’s okay. Just get your coffee first today. It’ll be okay. You can sit somewhere else. It’ll be okay.
Changing my routine is often difficult, and even something as simple as having to sit somewhere else can throw off the entire day.
I considered leaving and backtracking to the coffee shop a block back from the way I came—there are more seats and tables available, and the chairs are slightly more comfortable. But it’s a significantly larger and busier place that is frequented by (loud) people, leisurely chit-chatting. And young kids running around, often screaming while their parents pretend that they’re unsaddled by responsibility for a time.
“Good morning! Having your sixteen-ounce oat milk latte?” the barista asked.
I resigned myself to just finding another spot in the coffee shop. I mean, what if the other place had no seats available, and I’d end up worse off?
As I was ordering, the woman in my spot grabbed her stuff and headed for the front doors.
I tried to act cool about it yet was giddy inside, ecstatic that I wouldn’t have to spend any time acclimating elsewhere.
The sense of spatial ownership and needing familiarity to function at my best is exhausting, but significantly less tiring than having to start afresh somewhere else or in a different seat.2 I mean, I know what to expect from the air conditioning system in that spot. I know how the sun hits (if it shows its annoying face in winter), and I’m comfortable with it. I can see the front doors—something I need to feel safe and secure. The metal-framed, cushioned chair feels sturdy and supportive, unlike all the wooden chairs at the small tables and long window seats on the other side of the shop. And why the hell would I work from an armchair? I want to support my neck, I don’t want back issues, and if I wanted to work like that, I would’ve stayed home and done it from the comfort of my own couch.
In that spot, I know what to expect; therefore, I’m comfortable.
As the morning progressed, the coffeehouse grew busier than I’d ever seen it. Another regular walked in, balking immediately upon entering the space. After a moment, frozen in place, he rolled back on his heels, almost doing a little jig of seeming indecision. Familiar, I thought. He huffed, dropped his shoulders, and headed to the counter to order. I peered behind me and clocked that there was a woman in his regular armchair at the back corner of the small shop.
After ordering, he plopped his newspaper and keys at the other end of the six-seat, slim table I was at. Although we’re both regulars, we don’t interact. I can’t tell if he dislikes me or if he’s just a curmudgeon, but after a few nod-smiles thrown his way over the years, which went unnoticed, I now automatically mirror his detachment. There’s only one other older guy whom he converses with, as well as a woman I’ve seen twice who seemed to know him from elsewhere; otherwise he never makes eye contact with anyone. (Mind you, my intel is namely peripheral since I stopped acknowledging his presence.)
At that moment, observing him without looking directly at him, for the first time in over two years of frequenting the same space, I wondered if he’s neurodivergent too.
Like me, he wears the same outfit every day (I see him, at least): a purple, velvet derby hat with two dyed feathers sticking out; a purple, diamond-patterned button-down shirt; a steely kilt; heather gray, mid-calf socks pulled all the way up; and tan, well-worn hiking boots.
In that short period of time with him sitting at the same table as me, out of all the times I’ve seen him but never interacted, I felt compelled to engage him. But, as wary words inched toward my lips, the woman in his spot got up to use the restroom. He swooped in to claim his seat, damned if she wanted to return to the spot again.
I didn’t think to follow the drama and check for a potential reaction from her when she returned—I don’t even recall her leaving—but the whole situation made me curious. And it made me consider something my dad said recently.
While doing tons of research on Autism pre-diagnosis three years ago, I started picking up on mannerisms, ticks, and behaviors of friends and family members that aligned with Autistic traits.
You think everyone is Autistic, Brian said once.
I don’t, to be clear. However, I do notice that neurodivergent people tend to find each other. Whether a friend discovers that their lifelong struggles were also a neurodivergence or two only after another friend is diagnosed. Or when one of their children gets diagnosed with a neurodivergence first, and the signs become ever-so clear as we whittle down our own life experiences. Or, if you as the known neurodivergent person just silently acknowledges that your friend has some “quirks” that are probably what make it possible for you two to even be great friends; there’s something “different” about the pairing that makes it work.
(As an aside, I’ve noticed that Highly Sensitive People3 pair well with neurologically different people—I mean, they’re considered neurodivergent, too, so I guess it makes sense. Maybe the high level of empathy and seemingly higher-than-average patience helps. But, as the less socially acceptable neurodiverse folks, we appreciate your love, respect, and friendship.)
Part of the Autism diagnostic process often involves a family member or someone who knew us in childhood’s input. But, as late-assessed adults, that’s not always available. Depending on the diagnostician, it may or may not be a necessary step to receiving a diagnosis.
Both of my diagnosticians were understanding of why I didn’t want family involved. And as Brian and I had been friends and together for well over a decade at that point, they found his feedback and examining baby and toddler photos of me suitable supplements.
Now three years post-diagnosis, my dad still struggles to understand (maybe even believe) or may just want to deny the genetic side of my health issues, as well as the genetic neurodivergence within the family.
I can imagine being from a generation that didn’t grow up with such access to information, and from a family that didn’t value education beyond understanding the importance of basic math skills, and the ability to read and write; that the knee-jerk response to deny-deny-deny anything with stigma is easier than trying to understand and potentially accept it as a Truth in your own life. I also realize that there may be a sense of guilt involved, made more transparent by several comments made recently about how he doesn’t know “where” these health issues and neurodivergences came from.
It’s not from my side, he’s said. Maybe your mom’s.
Repeating myself has always been difficult for me—it makes me feel deep, seething anger, which I assign to never being believed as a kid4 and to the neurological makeup of my brain.5
I can’t help the emotion, but I can (usually) control how I express it.
Assuming my dad’s short-term memory isn’t what it used to be, I calmed myself and explained things as if explaining them for the first time, only it’s the seventh or eighth time. And, because I’m Autistic with ADHD and childhood trauma, he gets all the details and sources to look into, as well as supporting evidence to back everything.6
Recently, one of his responses was: Well, isn’t everybody a little autistic?
Are everyone’s lives severely impacted by day-to-day life? No? Then, no.
I’ve long suspected he’s differently wired. I know my mom was based on her reactions, mannerisms, routines, and more. I’m certain my brother is, although his wife shared that he denies it vehemently, which she didn’t understand why.
I proffered that being accepted has always been important for my brother. And between stuttering in childhood, being bullied for it and for being an incredibly beautiful and shy little boy; plus the trauma of our mom’s cancer, long-term suffering, and subsequent death, all he’s ever wanted is to be just like everyone else or better. Respected and accepted, even if he can’t see that the hard shell he protects himself from the world with is tearing him apart on the inside.7
With my brother, our conversations often start with how great things are going for him, even if he later lets it slip that something isn’t so great. He seems to want to be “okay” and do well in life and in work, like anyone, I’m sure; yet “Autism” with all its stigma and misinformation spread from sources like Autism Speaks ☠️ and Facebook, a label like “Autistic” would put him right back into an “Other” category. An outsider again.
Everything he worked so hard for could change or may be lost, in his mind. His peers would look at him differently if they knew or even suspected. And, I’m sure there’s concern that a diagnosis might affect his job. His line of work is labor-driven, where his peers may not have experienced even a taste of college, where people from all over the world may attend; where they meet others from a more broad scope of backgrounds and experiences over solely who and what has been familiar their whole lives.
It made sense to my sister-in-law. And, as I explained, I realized that way of thinking may be true for our dad, too. As a self-isolating man born in the early 1950s, the only socialization he had was with his family—a reserved, hardworking mom married to a reserved, gas-station-owning father who used alcohol to cope, drowning his words and sorrows every day until it made his heart fail. My dad worked construction and drove tractor trailers, then worked as a lawn-and-garden technician, to eventually owning his own lawn-and-garden sales and service shop. To many people of that generation and older—even in high school as older Millennials—Autism was clumped into a general disorder of retardation. “Asperger’s,” or lower-support-needs Autism wasn’t considered the same spectrum-inclusive Autism that it is today.
No wonder they don’t want these labels associated with them. Being accepted as “one of the guys” has been seemingly a lifelong goal of one. And the other would only ever tell you he’s a “lone wolf.”
But, the fact of the matter is, humans still need each other whether we want to admit it or not.8
A step further: “Autism” was generally considered a young white boy’s disorder that seemingly only affected families of means, not poor people.
I’m still unsure what society thinks became of those young white boys.9 Did Autism just vanish once they became adults..?
Seemingly, they disappeared at the fringes, no longer a daily “problem” for society like “those (weird) kids” in primary school were.
Most of us with lower and even moderate support needs10 adapted and morphed ourselves into more acceptable people for society to tolerate—no matter how unhealthy and damaging it is to do so. We disappeared among the masses, not the fringes.
It’s difficult to acknowledge that even while getting to learn about and understand the real me beyond the mask, that some of the people I love may never understand or accept me as I truly am. Or, worse, they’ll never acknowledge, understand, or accept themselves as they may truly be either.
But, not everyone needs to be as introspective to survive. Not every neurodivergent person “needs” to discover and understand themselves to feel safe and free and at peace.
Or, maybe they do, and they’ll always deny themselves their Truth.
I don’t know.
But, they’re getting by, it seems, even if life is forever a steep uphill climb. If it works for them, who am I to say anything to the contrary?
The Man in Purple got his seat at the coffeeshop, and the only other older man he speaks to came in shortly after, as if on queue. My brother continues to advance in his career, proud of his increased earnings and earning potential. He has a beautiful family, a supportive spouse, and a good life. He has a lot to be proud of.
My dad continues on, getting another year in the same space he’s rented for five-or-so years now—something that’s important to him, that stability. Every day, he visits my grandmother for a few hours at the care home she resides in. Every day, he wishes he could take her home with him, even though he knows it’s safer for her if she stays put. Every day, he wishes my brother and I would come “home” and be with him.
I only know two out of three of these individuals, and I can say with confidence that the two of them are good people who are trying their best. They love others deeply. They’d do almost anything for those they love, and probably even for strangers, too.
It doesn’t matter what anyone else thinks or suspects, only what they care to know about themselves. And, if the label “Autism” is just one more layer of stress saddled on their shoulders when they’re already getting by, then it isn’t necessary, is it?
Like everyone, they’re worth loving as they are, and I hope they love themselves with the same care and fervor that they reserve for others.
That’s what matters, in the end.
Neurodivergent people are all around, mimicking you to blend in, competing with you to fit in or to prove themselves; dining with you and drinking coffee with you, whether they know they’re wired differently or not.
Many of us put all of our energy into going unnoticed. Even though, in the end, it doesn’t really work out. We’re always “othered,” even if we don’t want to believe or accept it.11
Hiding sucks. But sometimes it’s the only way to survive.
P.S. I predominantly write from my personal experience as an Autistic person with ADHD, chronic illness, Anxiety, and more. Each of these factors can influence my individual experience overall, as well as my experience of each condition.
What I share is not a substitute for medical advice.
Self-identification of Autism and ADHD (what many call “self-diagnosis”) is perfectly valid. If a personal Autistic experience I write about resonates deeply with you, consider these resources on Embrace Autism (starting with the Autism Quotient Test) as a first step. If professional assessment is important to you or your life has been impeded enough that you may need to qualify for Disability, you can print your results to bring to a diagnostician. (Having all those tests completed in advance saved me a lot of money!) Although there are many more diagnosticians available, here is a comprehensive list to get you started.
Lastly, some of my opinions may have changed since I first wrote the piece that lead you here.
Comment with any questions, and I’ll respond as soon as I can.
EDS is the acronym for Ehlers-Danlos Syndrome, a connective tissue disorder. Learn more about it here.
No wonder I’ve been working from home so much lately. This is exhausting just recalling this.
“A highly sensitive person (HSP) is a neurodivergent individual who is thought to have an increased or deeper central nervous system sensitivity to physical, emotional, or social stimuli. Some refer to this as having sensory processing sensitivity, or SPS for short.” What is a Highly Sensitive Person (HSP)?, Very Well Mind
“For children with complex trauma,” an article on StableMoments states, “[children] lying often becomes a survival strategy. It serves as a coping mechanism to navigate a world that may have been unpredictable and threatening. Lying can be a means to avoid punishment, maintain a sense of control, or shield themselves from potential harm.”
With this latest exchange, I finally copied and pasted my responses with links, etc., into a Note on my phone, so I wouldn’t have to hunt everything down repeatedly in the future. I’m not giving up on him, dammit.
“Masking is the process of intentionally, or unintentionally, hiding aspects of yourself to avoid harm. Recent research has suggested that autistic people might mask a lot and that this can lead to long-term problems in mental health.” Read more on the National Library of Medicine, PubMed.
“An active social life has been linked to a stronger sense of well-being and a longer life span.” What are the benefits of being social?, Medical News Today
“The reasons for the disparities in age of diagnosis for children of color with Autism Spectrum Disorder (ASD) are multifactorial and may include intertwined sociodemographic influences related to financial and educational resources as well as language and cultural barriers.” Racial, Ethnic, and Sociodemographic Disparities in Diagnosis of Children with Autism Spectrum Disorder, PubMed Central
Understanding the Three Levels of Autism, VeryWellMind. Level 1: Formerly known as “Asperger’s;” an Autistic individual with lower needs for support, although we tend to struggle significantly and due to our ability to mask our Autistic traits, we’re considered “Level 1” with lower support needs when really we’re drowning in the expectations of life. Level 2: an Autistic individual with moderate support needs. Level 3: an Autistic individual with severe support needs.
In grade school, while all of us youngins were figuring ourselves out, I’d argue that all kids are a little weird. But, there’s just something about, especially, being a moderate-to-lower-support-needs Autistic person that, no matter how much (damaging) masking we do, we’re always seen as “different” from our peers. And in those early days of personal development, when all you’re doing is trying to hide who you are to avoid stigma and scrutiny, can you imagine what that does to someone’s mental health and sense of identity? Then, to still not be accepted… it’s no wonder that the life expectancy of an Autistic person is now (up from 35 to) 39 years old, and why Autistic people are at a greater risk of suicide.