When You Discover, as an Adult, That You Might Have Autism
I was an odd little duck and kids are fucking mean.
From ages 6 to about 12, I was perpetually lonely. I spent my weekends riding my bike around my working-class neighborhood, circling the same block over and over and over again. I read constantly. The kind of reading where you zone out and don’t hear people calling your name and they have to physically shake you to get your attention. I had collections of things. Bells and dice and ribbons and Barbie shoes. I would line them up and stare at them and rearrange them in patterns that were satisfying to my little brain.
And I didn’t brush my hair. It didn’t occur to me. I mean, I sort of tried to make it look okay but I could never really get it to look like everyone else’s and it didn’t feel that important, anyway.
At least not yet.
To say that I ‘struggled to make friends’ is inaccurate because the truth is that I was unable to make a single one. I didn’t understand how relationships worked. I tried to be nice and smile and talk about whatever book I was reading, but they never seemed interested. They would giggle and whisper and make jokes that I didn’t understand. I ended up just chasing them around the playground because when I tried to join the conversation, they would laugh and snicker and run away.
When I was younger, I thought maybe it was a game and that I was included. This makes sense, right? They run and I chase. This makes sense. Except…no one noticed when I stopped chasing. They were running despite me. I was invisible. I slowly learned that a better place for me to spend recess was on the sidewalk, up against the school building with my books, or in the library in one of the study carols. Or, if I just had to move my body, I’d swing from the monkey bars alone, counting the steel rods by twos or threes or fours, seeing how many I could skip.
Sometimes I climbed on top of them and sat, perched above the playground. I watched as different-sized groups ran by in clusters. I was fascinated by my classmates and wanted desperately to be part of a group — any group — and I never ever was.
It’s not like I could blame it on the culture of the school or the character of the kids, even though it was a private Catholic institution and some of the people there had enough money to put on airs. I never found any place where I fit in. I didn’t fit in with my classmates. I didn’t fit in at camp. I didn’t fit in at church or with my cousins.
The world was all-round holes and I was a square peg.
In the fourth grade, I became obsessed with winning the class spelling bee. I spent all of my time in before and after school daycare memorizing word after word. First, I tackled the fourth-grade list. Then the fifth. Then the sixth. Then the seventh. And I won. I won my class’s spelling bee. Then I won the school spelling bee. Then I won the all-city spelling bee.
I lost the regional bee in the first round because I didn’t capitalize the word “Christian”.
I started taking gymnastics lessons. I practiced four days per week, three and a half hours per day, for years. When I finally quit at 13, I could do back handsprings on the balance beam and full-twisting layouts on the floor.
And, yet, I still didn’t brush my hair.
I loved letters and numbers. I loved symbols. I checked the same book on Egyptian hieroglyphics out of my little school library, week after week, memorizing the figures. I copied them onto paper and wrote fractured sentences and paragraphs with them — pages and pages of code that no one else could read, but made perfect sense to me.
The process of reading functioned like a ‘cut-and-paste’ of words into my brain. Once I read something, it became imprinted in my memory. When I went to recall the information, I could literally see the page full of words in my mind. I still do this, although not as nimbly as when I was younger. It’s just the way my brain works.
I remember finishing every assignment in elementary school long before everyone else. Always. Worksheets that were supposed to take 20 minutes were done in three and I spent most of my classwork time just staring out the window or reading, waiting for my classmates to catch up. Memorizing information — the principal task expected of elementary school students — was effortless. The other kids, even the really smart ones, called me a “showoff.”
Sometimes I wonder what amazing things I could’ve done had I been taught challenging content at the rate at which I was capable of learning. The Stanford-Binet I took in the 5th grade assigned me an IQ score of 156.
I think this was my saving grace.
Around the second or third grade, a schoolmate had a birthday party and invited the whole class. I was crazy excited to have been handed an invitation — it was my first — and I desperately wanted to go. He was a “cool” kid who always brushed his hair and I thought his house was a mansion. The backyard was massive and had a walkout basement. There was a pinata full of candy — the good kind — and a table full of food from which you could just take whatever you wanted. When I got there, I forgot myself and ran to the treehouse to join my classmates. Maybe I thought their rejection was a function of being at school. But, when they saw me, they screamed in feigned disgust and fright — and ran.
I was dismayed to find that they were even less tolerant when roaming playground monitors weren’t present.
Embarrassed and ashamed, although I didn’t quite know of what — existing, I suppose — I continued my climb up the treehouse ladder, clumsily pretending that ascending was what I had intended all along.
I didn’t go over there to play with them. I just wanted to check out the treehouse.
I sat up there alone and watched the kids from above, like the countless times before, from my perch on the monkey bars. But this view was even higher and I watched them move in groups. They looked like little ants clustered around hills. Individuals broke away and moved from group to group, intermittently. I wondered how they decided to do that. I remember, at one point, all of the little groups of three or four converged and started running around the yard as one. They ran in circles. The colors of their shirts swirled against the green backdrop of the perfectly manicured lawn. The movement of the ant children was so beautiful that it made me cry and I felt actual pain in my chest from the longing. I laid down on the floor of the treehouse wanting so badly to be an ant, too. They made it look effortless. I closed my eyes, which were silently filling, spilling, and re-filling with tears, and watched the swirls dance in front of my eyes. It looked like a rainbow, but without the blue.
Because I was the blue.
In my imagination I swooped down into the yard like a wild-feathered bird, my azure aura trailing behind me, and everyone cheered. The rainbow was finally complete and it swirled and swirled.
The pain in my chest receded and was replaced with a warmth I had never felt.
From a distance, I heard my name. I pushed it out of my mind, not wanting to stop swirling with the other colors. A hand on my shoulder pulled me out of my dream and I woke to find myself surrounded by concerned adults and guffawing classmates. I had fallen asleep up there and the party was long over. When my mom arrived to pick me up, I wasn’t to be found, but no one noticed me missing, sending the adults into a panic and the kids into hysterics.
My mom held my hand as we left. She saw their disdain for me up close for the first time. At least, in that moment, she was on my side.
This pattern continued for years.
Around 13, things started to change for me. I had always been on the taller side, but I began eighth grade at 5’8” and, by the time the school year was over, I was nearly 6 feet. I was very tall and very thin, about 120 lbs. I grew breasts that were outsized for my frame. In high school, I used my gymnastics skills to become a cheerleader. I was the one doing back handsprings for each letter as the crowd spelled out “S-P-A-R-T-A-N-S” during the time-outs of basketball games. My height, athleticism, and ability to hyperfocus made me a natural at volleyball and I started varsity my freshman year.
It didn’t take long to realize that there was real power in my appearance, my height, and my sexuality which was intoxicating for someone who had never known power before. I felt wanted and I had never felt wanted before. I was no longer an outcast. I was — included.
And it didn’t take long for me to figure out the source of my worth. When you look like a model, people treat you differently. They want you. They want to be with you and around you. They want pieces and parts.
Some want all of you.
I was still the fucked up little weirdo that annoyed the shit out of everyone but now wrapped in aesthetically pleasing packaging. The weirdo’s existence was now forgiven.
And that fucked me up even more.
I wanted to be loved and I used what I was given to try to meet that need. The world let me know pretty quickly which part of me was worthy of its attention. It wasn’t my intelligence. It wasn’t my wit. It wasn’t my special brand of accommodating, borderline desperate kindness. It was my physical shell. So I cultivated that for a long time to feel love and belonging.
The only reason any of this matters at all is because of my daughter.
She has autism.
Fast forward to 2009: a husband, 3 children, a big house in the suburbs, a brief modeling career, an even more brief college volleyball career, and a Bachelor of Science in Psychology under my belt.
I was 30 years old and my 18-month-old daughter had just been diagnosed with autism.
I began researching her diagnosis— by then I had learned to regard my hyperfocus as a superpower — and I experienced waves of recognition in the descriptions.
How had I not seen this before? I took a Developmental Psychology class for my undergrad degree in 2000, but the only mention of autism in my textbook was a six sentence paragraph buried somewhere in a chapter on developmental delays.
God bless the internet.
As I poured over diagnostic criteria, behaviors, traits, and prognoses, I started to feel the unease of that little girl who had no friends start to churn in my belly. I read blogs written by autistic people describing how they didn’t “get” people. I read about how they were teased mercilessly and how, no matter how hard they tried, they couldn’t figure out how the social stuff worked. I read about affinity for patterns and repetitive behavior and hyperfocus.
My stomach dropped. No fucking way.
So I did more research. I started looking for self-assessments and found one developed by Psychologist Simon Baron-Cohen (cousin to Sacha) and his colleagues at Cambridge Autism Research Centre in 2001. The test is called the Autistic Quotient, “AQ” for short, and it’s designed to provide a metric for autistic traits in adults. It consists of 50 self-report questions and the results are scaled from 1–50, with an average score being 16.4. 80% of adults diagnosed with autism score a 32 or above vs. just 2% of the control.
So, of course, I took the test. And I have taken it probably twenty times since…just to see.
I took it again today.
In all those retests, I have never received a score under 36.
And the only reason any of this matters is because of my daughter.
She has autism.
I didn’t see any similarities between us at first but, as she has grown, so has my ability to relate to her. She has no real friends at school. She complains that the kids don’t “get” her and she doesn’t “get” them. So she cries. A lot. She loves little kids and babies because they don’t judge her quirks — they revel in her attention. She adores animals, especially baby animals, likely for similar reasons.
She prefers to talk to adults rather than kids, because they are less likely to make fun of her and, if I let her, she would spend all of her waking hours on the computer because computers follow rules and don’t reject her for being “weird”.
I’m watching as she hurtles toward adolescence, wanting to be accepted and loved, while not knowing how to talk to her peers about anything except ant hills, dinosaurs, and Agario.
And if I didn’t brush her hair for her, she wouldn’t brush it either. She’s going into the 5th grade.
She got called a “retard” at a pool party my ex took her to a few weeks ago. It wasn’t the first time and it won’t be the last.
I have so much fear and so much hope. She is beautiful. She is very tall. She is very thin. The world could quickly teach her which parts of her are valuable to it.
My job — with the priceless benefit of hindsight — is to not let her believe them.
I have since asked maybe twenty people to do the AQ test. There were several that, based on my experiences with them, I was certain would score, if not higher than me, then at least in the same range.
No one I know has scored over a 24.
Mind you, AQ is not a diagnostic test. It will not tell you whether or not you have autism. All it measures is your self-reported traits and behaviors that are consistent with people who do have a diagnosis of autism. It assesses one’s “risk” for being diagnosed with autism.
If I am autistic, I’m a pretty incredible success story. I attribute that outcome to my intelligence. My affinity for patterns allowed me to develop some pretty advanced, albeit superficial, social skills in early adulthood. I am functional in my everyday life and have even been called upon to accompany friends who are uncomfortable in social situations. For them, “networking” type situations are nerve-wracking and energy draining. For me, those kinds of surface-level interactions have become the easy ones. I learned that a lot of behaviors are predictable and developed communication strategies and contingencies. I experimented over the years with eye contact and vocal intonation and watched people interact, mimicking their exchanges and iteratively honing my own. A lot of my behavior is rote but, 95% of the time, it’s good enough. And I’m doing alright. But I still struggle with more complex social interactions and sometimes really just…don’t…get…it.
For example, recently I’ve been working on trying to communicate with my ex-husband (who, in my defense, has his own pathology) and I am failing miserably. I read books and heed advice and yet no matter how many rules I construct as scaffolding for our interactions, I can’t seem to avoid conflict. I just don’t understand how to productively communicate with him when emotions convolute the situation.
Autism or not, I’m convinced that there’s an advantage — to both Charly and me — to having my childhood experiences to draw on. There are decisions to be made that require a special brand of empathy that most people do not have. For example: Do I attempt to shield Charly from the pain of feeling left out — as I felt as a child — and send her to schools that serve kids on the ASD spectrum? Would that allow her to interact with other kids like her and feel accepted, building her self-esteem and confidence? Or do I send her to a mainstream school where she will hopefully learn to model the behavior of her typical peers — like I did, albeit later in life — and acquire coping skills allowing her to function in a world that was not designed to accommodate her?
Regardless of which I choose, having an idea of how she feels is a perspective for which I am grateful when I have to make those kinds of decisions.
It was pretty clear from the time I put two and two together that seeking a clinical autism diagnosis offers me nothing.
It doesn’t matter.
Even if I do fall somewhere on the ASD spectrum, per the diagnostic criteria, I am not suffering any distress. I will not attend therapy. I do not need workplace or educational accommodations. I did okay without any of that and even managed to extract some pretty fucking remarkable coping skills from all those lessons learned the hard way.
The person for whom it does matter is my daughter. She was diagnosed at an early enough stage for interventions to make her life better and less painful. She’s still a child and her life, thus far, has been so much better since I discovered what I did about myself. My knowledge gives me invaluable insight on how to help her — which is a perspective that many parents of autistic children do not have.
They, just like everyone around their child, simply can’t understand.
I understand Charly.
There is some degree of peace that comes from knowing there may be a reason why I was the way I was as a child — that I wasn’t just defective or broken. But still, it doesn’t really matter. At this point, it is what it is. I am relatively happy with who I am and, even if I wasn’t, a diagnosis is not going to change my past.
But my daughter will have a better future for me having walked — at least to some degree — in her shoes first.
Her favorite color is blue.
I can help her learn to swirl.
She will never be alone.
And I will never stop reminding her why she is valuable.
If you have an interest in autism, here is the story of my daughter’s autism diagnosis, as well as a piece about how my own dysfunction impacted her Sensory Processing Disorder and food aversions.
As always, thank you for reading.