My father is a visionary, dreaming big, with no limitations. My mother was more cautious, seeking security over adventure. Weeks after they married, she bravely left everything she knew behind and moved with her brand-new-just-out-of-the-box husband to a continent halfway across the world, never knowing if she would see her hometown or parents ever again.
Rather than work outside the home, she chose to be a homemaker, caring for her family with terrific organization and pride. She worked hard to make sure her husband’s and kids’ needs were met. My father, a physician, was on-call a lot. My mother was on-call all the time for everyone but herself.
She would cook dinner for us every single night. My sisters and I would eat with her and then, after homework and thirty minutes of television, we would all go to sleep. When my father came home, most often at midnight or later, my mother would rouse herself and sit at the table, silently serving my father his food.
Fast forward thirty-five years and picture this: Adrian, getting up from his chair to help me strip his sheets. He happened to be home on the day that I change the bed clothing. It was morning and the sunlight was haloed around him, warm and clean. He mentioned that the mattress cover should be washed. I told him that I do wash it every other month, but he had already pulled it off.
I said, “Okay, I can do that, too.”
“That’s sweet, but I can do my own laundry. I am home after all,” Adrian said. I work from home and I enjoy housework, so I usually take care of that aspect. My husband works about eleven hours a day plus the commute. We both work very hard.
“Nah, I have a system.” I smiled at him, though I could feel ripples of unease spreading inside my abdomen.
He looked at his bared duvet and wrinkled his face. “I wonder if I should get a new one.”
“I usually wash these two to three times a year. I also air them in the sun and spray a little lavender on them to refresh them in between washes.” Washing a duvet is a time-consuming effort, so I usually plan far in advance for those. I added his to the pile.
Now I was out of routine. Those ripples became a whirlpool, sucking me down. As I went through my day, it felt as though my homunculus was crouched just inside my ear canal with his hands on either side of his mouth intoning, laundry laundry laundry laundry laundry.
Several hours later, I was still drying the duvet, readjusting it every fifteen minutes in the dryer, tennis balls bouncing in the machine like booted feet stomping around the house (the tennis balls keep the duvet from rolling into a ball). It was after eight o’clock. My rule is to stop laundry at five pm, because then I can turn my attention to cooking and planning for the next day.
I had a meltdown.
“Adrian, I have to start saying no to things. I just kept adding to the laundry and now it is late and I am overwhelmed. I have a system.” I tried to blink away the tears, but they are as much a part of my meltdowns as my higher-pitched, dysregulated voice.
Adrian’s eyes widened in surprise (at least I think it was surprise!). “I can finish the laundry, baby. It’s no big deal. I am glad you are understanding what you need, but at least this is recoverable.”
Now it was my turn for wide eyes. “But that is the point. It doesn’t feel recoverable. The whole system broke down. I am going to bed late which affects my morning routine and … we still have to make the bed.”
Okay, so we are making progress. Adrian sees that what is recoverable to him is not to me. I didn’t realize that I was so good at hiding it.
Let me repeat that: I didn’t realize that I was so good at hiding it.
I offer you this quote by Lili Loofbourow: “At every turn, women are taught that how someone reacts to them does more to establish their goodness and worth than anything they themselves might feel.”
Was my mother “brave”? You bet your ass she was. But, she was also always uncomfortable. Why did she have to get out of bed in the wee hours of the morning to spoon food on my father’s plate, each bite churning inside his mouth like laundry in a washing machine? Because it was never even in question.
Why did I break my routine and wash the mattress cover and duvet? Because I was trained from an early age that everyone else’s comfort is more important than mine. I was taught not to express my needs, such as hunger, downtime, help with schoolwork, because that was complaining, that was being ungracious.
Adrian is not coercive or manipulative in any way. He is kind, compassionate, encouraging, and independent. He does not expect me to do his laundry or serve him food. There is no sense of duty hanging over me like a guillotine. And when I do the cleaning and the cooking, he always says “thank you” and/or “I love you” and/or “I appreciate you”.
So why was I still making myself uncomfortable? I thought about this for about a week. Why do I say, “okay” all the time, when what I am feeling is “uh-huh, no way”?
I began to change my behavior. Last week, I made vegan meals for both of us. Usually, I make vegan for me and omni for him. But it is becoming increasingly more difficult to purchase and prepare meat dishes because what I see and smell is violence and terror. I do not see a package of chicken thighs. I see three animals who were slaughtered and dismembered, who had been scared their entire lives. I have to pause while even typing this to cry about how much pain these innocent creatures experience.
I didn’t tell Adrian my plan because doing so would almost be akin to asking him permission, to getting the assurance that I knew he would offer. This wasn’t about Adrian and his unconditional support. It was about me and the choices I make to provide for his happiness (or my perception of his happiness) at the expense of my own. I wanted to sit with it for that week. I wanted to see if I would apologize or explain, feel guilty.
I had so much fun cooking last week! Because I wasn’t making two separate meals, I was able to create elaborate dinners: tomato, sausage, and cream farfalle; veggie burgers that were smoky and sweet from the grill; a rich and melty cheese for our black beans and rice. Adrian enthusiastically praised my cooking as he always does, appreciating my hard work and creativity. He later told me he didn’t even notice the change.
At the end of the week, after a particularly insightful therapy session, I apologized to Adrian for, over many years, having actually repeated the following: “I do things that are uncomfortable because those things make you happy. Why can’t you do the same for me?”
Yep. I said those words. Again and again.
After apologizing, I explained to him that the sentiment came from a place of genuine bewilderment and hurt. I was trained that love meant being uncomfortable and I couldn’t understand how he could say that he loved me and still choose his own comfort. I wasn’t testing him or resentful … I just didn’t know there was another way.
I then smiled at him and said, “But you never even asked me to do those things! I did all of that on my own. You always knew — love means being able to be honest about our needs and supporting one other as we each climb our own mountain.”
And that got me thinking about “female autism” vs “male autism”, which, incidentally, does not have to be gender specific. Still, the very notion that girls are trained from out of the womb that their comfort is always secondary provides quite a bit of insight as to why our autism often isn’t diagnosed sooner … or even at all.
When my beloved grandmother braided my hair, her touch light and hesitant on my tangled curls, that gentle brushing literally made me gag. I learned the very first time that I was to sit still and be quiet with a smile on my face. I would go in the bathroom when she was done and roughly push my hands through my scalp, pull on my braids hard as possible to erase that soft touch. I would gag and sometimes vomit, but always always in private.
During primary school, my mother would arrange playdates for me with one of her friend’s daughters. I hated those days … I knew about them in advance and recoiled at the thought of my beloved afterschool routine — cosy clothes, snack, Flintstones, playing in the desert, reading and writing — being upended. I hated having to socialize, especially after having been at school all day. I didn’t know how to play like other kids and I didn’t want to learn, either.
The one time I told my mother I would rather not play with Alice anymore, she said, “But, Alice is your friend. She likes to play with you. You hardly ever see her, anyway. It’s only one afternoon.” It took about three years, and an increase in “sullenness”, stillness, and silence, before the playdates were abandoned. Of course, I was chastised for being impolite and selfish, though my “sulking” was not intentional; it was borne out of a self-preservation, a need to turn inward and survive.
Even after expressing my dislike for slimy foods, like mushrooms and kerala, I was forced to eat them. I was shamed out of my cosy clothes on the weekends because it was lazy to wear them all day long. I needed to sit with my parents’ friends and ask them questions and answer theirs with enthusiasm — gestures, smiles, and head nods that I would practice in front of the bathroom mirror. I would plan these conversations out: Okay, I will ask three questions and answer one. Then I will be free to go to my room.
I used mimicry in those situations, spouting off wisdom that I read in articles and pontificating about topics that held no interest for me. Of course, I still missed social cues, one time repeating a classmate’s rant about how clothing labels lead to class divisions in school, “like with Guess. All of their clothes have Guess written across them. Only the rich, spoiled kids wear those. That’s how they can tell who can be in their little clubs.”
In reality, I cared very little about social dynamics, wasn’t very aware of the cliques in my junior high, and clothing for me was always about comfort first, bright colors second. But, if I was forced to make conversation, this was as good as any I had memorized. My mother reminded me later that her friend’s daughter, who had also come for tea, worked for Guess and pointed out that she had been wearing a Guess shirt at our house. I can still envision it: a cropped white t-shirt with Guess scrawled across it in pastel pink cursive.
I laughed and shrugged, not really caring because all I had wanted to do was focus on the stories I was writing and not waste one more second on this social stuff. Besides, what I said was true. I was made to apologize, which I had to do over the phone, another vehicle of discomfort for me.
I remember holding the receiver in both hands, pressing it hard against my ear, as if that would help me know when it was my turn to talk. My breath was hot and moist as I whispered, “I am sorry. Sometimes I talk without thinking.” That was something I had heard repeatedly and finally believed about myself.
In reality, I am always thinking.
At every turn, when I tried to communicate that I was uncomfortable, the message I received in response was that I had to grin and bear it. I even had a Garfield bookmark that stated those very words! No wonder I was not diagnosed earlier! And no wonder I struggle with a formal diagnosis now. I am an expert at being the “good girl” so that when I retreat to my bedroom, my sanctuary, I can be left alone to cry, to write my stories, to daydream, to wear what I want, to talk to no one, to read and escape.
If girls and women are subtly trained early on that their discomfort is to be expected … how much more profound is that directive when it comes to autistic girls and women? So many of us are actually told how our behavior needs to change because it makes everyone else uncomfortable. We are told that we should make ourselves uncomfortable for the sake of everyone else.
- “I know you want a party — people want to celebrate your birthday with you!”
- “That dress looks pretty on you. You don’t hear your sisters complaining that theirs are too scratchy.”
- “Stop fidgeting so much. Why do you keep moving your hands around? It’s distracting.”
- “You can talk to your aunt for at least a few minutes. All girls love talking on the phone.”
- “Let me pull your hair back. Why do you keep covering your face with your hair?”
- “Once you get there, you will have fun with all of the other kids.”
- “You need to spend less time in your room and more time with the rest of us.”
- “You spend more time with your bugs than you do with people.”
- “Put that book down.”
Well, no more. Now I say, when meeting someone new, “I don’t shake hands,” and I offer no explanation because I don’t owe anyone an explanation. Now, I don’t force myself to engage in exhausting conversations with confusing social mores. I don’t apologize for not knowing anything about current pop culture because I only watch the same television shows over and over again. I choose to spend my time on my routine and special interests — cooking and writing — and explain those choices when I decline invitations to lunch or well … I don’t get many invitations anymore, so I don’t have many examples of that!
Here we are, 2018: I am in my forties, I am autistic, and I am going to let my freak flag fly. Because I live in a neurotypical world and I am not a neurotypical girl.