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Fitting in at what cost?
Throwback to an old newsletter on society, and masking Autism to a point of major risk(s) to health.
Note: This message was originally published on November 2, 2021. It’s been updated and expanded.
See you back here next Sunday with a fresh essay.
"You seem like you're struggling more now than you ever did before," my husband, Brian, said last week while the kids were at school and we were hauling out their room.
My knee-jerk response was, "Well, yeah—I just lost my dog, and life has gotten so much more complicated in the last decade." But it was more than that.
My brain did the whole shutdown-thing it does when I'm caught off-guard by something. My mind goes blank, I don't have any noticeable feelings or emotions, and at times I can't physically move.
It's my brain's flight-slash-freeze response in the fight, flight, freeze or fawn physiological reaction arena. Instead of physically escaping a situation, my brain does a hybrid version where I sometimes freeze while simultaneously disappearing into the voids of my mind where nothing exists but a tranquil, dark solitude.
Not too long ago, I hated when my brain did this. To the outside world I might look stupid or maybe even a little crazy. But now, I'm learning to embrace this mechanism of self-regulation my body and mind employ when something happens that I can't quite compute in a suitable amount of time to others.
I'm finally beginning to embrace my Autistic brain.
The shutdowns give me quiet, even when the world bustles on around me. For just a few moments, I get a break from the reality that became too much to endure.
My heart rate might’ve quickened before, but it's calming now. My brain overloaded, and now it's rebooting.1
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Later that evening while our kids readied for bed, Brian and I were sitting in our office chairs across from each other, and it hit me like a lightning bolt.
I shifted toward him and said, "It’s not that I’m exactly struggling more now, I’m just showing you more of my struggles—I’m unmasking as I learn more about Autism,* and now you’re just seeing more of my processing that I hid from everyone as to not inconvenience others."
I didn't expect him to respond, but I needed him to know.
The next morning after I did my first-round attempt at getting the kids out of bed for school, I went back into our bedroom to see if Brian was still sleeping.
He put his arm out for me to come lie with him, and I did. He firmly pulled me in for a kiss and wrapped his arm around me—much more effort than sleepy-Brian usually puts into an early morning greeting.
I can't say for sure if that was his way of saying I love you, I see you, I accept you for who you truly are. Although I'm obsessed with words and perfecting verbal communication, Brian is not. His actions are how he shows love and understanding which, at times, left a vast space, open to interpretation, leaving my mind reeling.
But that moment of physical communication2 made me feel content, understood, and accepted.
We've been through a lot in our time together. As we all age, we become more complex, our lives more complicated—filled with more responsibilities, more expectations, and just more.
As I watch my children slowly falter and crack under the pressure of society’s membership expectations, my thoughts go back to when I was a child, choosing to lock myself away in my room, or up in the carrotwood tree in front of our house. I resided in my own inner world there, safe from bullies and insistent teachers and burnt out parents, and from responsibilities.
I don't often look back fondly at my childhood, but I remember those moments of respite—escapes from demand and reality.
In the social world, I feel like I have to slip into a likable persona to make other people comfortable around me, to not trouble others with my lack of filter or overly direct verbalizations (or socially inappropriate blurtings), or with my extraordinarily strong emotional experience.
Outside our front doors, most Autistic adults use up every ounce of energy reserves to simply not seem like a nuisance or different or weird to those around us. We hide behind a socially acceptable mask we expertly crafted just to move about the world with you, and to divert suspected rejection.
It’s a problem for us,3 potentially more so than for neurotypical people (e.g., neurotypical folks might mimic others, but Autistic maskers suppress our need to stim4—soothing, self-stimulatory actions—in public, and suppress our sensory experience,5 even when it’s eating us alive from the inside, etc.).6 This “masking” creates fissures in our mental health that grow and deepen and widen over time.7
It’s why I and so many other women8 had been overlooked as Autistic and misdiagnosed with mental health and personality disorders such as Bipolar II Disorder, Borderline Personality Disorder, OCD, General Anxiety Disorder,9 and Major Depressive Disorder—my mask and plainly having female sex organs left my Autism missed for decades. During my childhood, Autism was a young, white boy’s disorder. People of color,10 girls and women,11 in general were overlooked entirely; sometimes due to different presentations, but namely due to lack of studies12 done on any other races or assigned-at-birth sex: Female.
Sure, sometimes these mental health comorbidities do exist for Autistic folks, but for many of us, we go unnoticed because we force ourselves to squeeze and squish and bend and fold into socially acceptable molds to avoid ousting from society.
As fellow Autist said in her TedX Talk:
“I can mimic normal but my Autism isn’t gone, it’s just not your problem.”—Jolene Stockman
This topic has weighed heavily on my mind as my neurodivergent children struggle more and more with age, and experience increased social interaction post pandemic lockdowns.
And although I originally wrote this post months before Autism Awareness Month (April) with awareness in mind, spreading awareness of neurodivergence doesn’t have to be designated to one month out of each year.
Gaining understanding and empathy for those who share the world with us should be part of everyday life. And awareness that these neurologically different people who are capable of blending in, doing so at the risk of their own mental and physical health, and often great risk to their physical health and safety,13 I hope, matters to even a small minority of people.
Trying to make the world a safer and healthier place for all of its citizens should be part and parcel of the journey.
But we’re not there quite yet.
I believe we can get there, though. And with compassion, information shared by those within a community, and sharing greater awareness is a solid place to start.
Before I go, here are 3 more things (from 2021, but still relevant today):
My oldest stole Drama Queen* from me because her special education teacher said it was amazing, so I let her take it for now and started reading Divergent Mind* by Jenara Nerenberg. It covers the basis and understanding of several neurodiversities, such as highly sensitive persons, ADHD, Autism, Sensory Processing Disorder and synesthesia. Whether you also have none, one, or a cocktail of these neurodivergences, I’m finding Divergent Mind to be a beautifully written bridge to better understanding our fellow humans. And as someone who literally created a character to play every day growing up just to get by, I’m sure I can speak for most of us differently-wired folks and say that it would be nice for our neurotypical peers to meet us halfway. Divergent Mind seems to be a great start for that bridge-building.
If you’re interested in the TedX Talk I mentioned from Jolene Stockman, here it is.
“There are no external guarantees in life. The only thing you can guarantee is that if you take care of yourself and be true to who you are in the process, that level of self-care allows growth, healing, and self-love which often gives you the capability of doing good for others.” —Sara Eatherton-Goff
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Where communication breaks down for people with Autism, Spectrum News
Is Autistic Camouflaging Really Bad for Your Health?, Psychology Today
How Autistic People Experience Sensory Processing Issues, Psychology Today
“Masking Is Life”: Experiences of Masking in Autistic and Nonautistic Adults, PubMed, National Library of Medicine
Personal Update: General Anxiety Disorder (GAD) and Complex (C-)PTSD were confirmed during my official diagnosis of Autism Spectrum Disorder.