Chronically Writing - Autism Masking
- saraelliemackenzie82
- 4d
- 4 min read
"You don't look disabled."
"No! You don't look autistic!"
Those are things that I hear often.
They are right. I am thirty-six years old and have managed life pretty ok. Although it took a while, I have a Bachelors in Educational Studies. I am self-employed as an author. I have a son and a husband and two fur babies. I own my home and can pay my bills, take phone calls and answer the door. Take walks and act civilized in public mostly. Smile and greet people. Run and play with my son. Use the bus and go to appointments and to the store without problems.
But there is something different inside, where nobody can see.
It's not the pain of chronic illnesses. It's autism. It's something I am still discovering, and that includes who I truly am. It's the years of trauma of being unable to unmask. The times in which I was mocked for being myself because it was misunderstood, or not expected from someone like me in society, or considered childish or rude.
Being talked about like this was nothing new. My mother came from a Polish family and my father's heritage included German Jewry. Surrounded by Holocaust survivors, I was nothing more than a mischling, an odmieniec. It did not help that many thought my grandmother was Lithuanian, not Polish, and I could not speak the language well. This was a HUGE no-no in a Polish neighborhood.
Despite many immigrants wanting their children and grandchildren to read, speak and understand English, they wanted us to remember where they came from. They had a certain picture in their mind about what that American Dream would consist of. For my Polish grandparents, who came from the same providence (but different villages), it was not always the same.
The number one thing they mutually wanted was for everyone not to act like "the shame". To act our age and what society expected out of us in America. We were also expected to keep our feelings bottled, to remain calm and devout to Christianity.
There were small hints from my mother's generation that there was something a little off. My uncle always reminding us to act like adults and to stand still. One aunt claiming that her son loved classical music at an early age and playing an instrument brilliantly. My mother confusing left and right.
Then, my son was diagnosed as autistic.
To note: even though it is frustrating some days, I would never trade this life for the world. On the other hand, it allowed me and my husband to research autism and what it is, especially during the COVID-19 pandemic. What we found out allowed us to be better parents. It also got me thinking when I read an article.
Autism is genetic. Not caused by Tylenol or circumcision of your son. Purely passed down through families.
That was when we raced to research our families.
My husband's 3-4x great uncle (I think) had special needs. There was one marker. But something else bothered me, and the more I read about autism, the more I began to see something...in me. A lot of these qualities, I found that I fit into. When I dove further with the genetics aspect, I began to see patterns (another autism trait) in my mother's family.
I could look at my mother's mother first. The strange Christmas gifts (like gel deodorant because she found it and liked it). Only liking certain colors and textures for her clothes. I cannot say much about my aunts (because I never really got to know them), but my mother and uncle, I can. The hyper-focusing. Confusing directions. Emotional outbursts at the most inopportune moments. The weird interests.
And me?
Well, I don't like eye contact. I look in the person's general direction when I am talking. I prepare scenes in my head so I don't look foolish in public. I practice something or plan going someplace down to the last second and sometimes sit for hours until the event begins.
I am lucky and have a therapist who believes in me and encouraged me. She sent the referral and I was finally diagnosed. But with the diagnosis, I had to take responsibility, understand what autism masking is, and how I can cope with this new lens.
I learned how tiring autism masking is and why it's wrong. I also learned why a large amount of my anxiety is being forced to act what my mother said society was...and that it was abusive. That emotional outbursts were normal and I had to learn how to control them to the best of my abilities. That meant knowing what sensations bother me and how I could cope with them in a neurotypical world.
And that was when I began understanding the little things that made me ME.
When I am going out solo, I have headphones on and I am always checking around me. The noises outside are too loud for me. Or, there are certain clothes I love. And my weird interests include periods of history and stamp collecting, amongst others.
While everyday, on the inside, I am battling something totally different and difficult.
Like the pharmacy who messed up my order after a long day of not getting anything done. My husband who forgot to do that one little thing for me that he promised some months ago. The dog frustrating me more after I just dealt with a relation. Somehow, somewhere, I was going to break down in front of them. The mask would fall and all the times I tolerated the neurotypical world did not count anymore.
You don't always know what a person is experiencing just by looking at them, Sometimes, their last straw might have been something related to their autism. Or, the holding onto the mask is too much. Or, their hands do not want to work and they're oddly clumsy, and you happen to be part of the accident.
We don't mean to be rude, I promise. We are still learning. This world was not built for autistic people.
I hope you can be kind, always.
Namaste, everyone. Have a great day!