When You Discover, as an Adult, That You Might Have Autism | Organization for Autism Research

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This week’s blog post is by AJ Kay, a mom who recently discovered that she has autism. In this blog, Kay describes her childhood, and, how looking back, she clearly sees the signs that she had autism growing up. This was originally posted on The Medium.

All the Ways It Doesn’t Matter…and the One Way That It Does.

I was an odd little duck and kids are fucking mean.

From ages 6 to about 12, I was perpetually lonely. I would ride my bike around the neighborhood in the same circle around the same blocks 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 shake you to pull you out of it. 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 pleasing and satisfying. I didn’t brush my hair. It didn’t occur to me. I mean, I tried to make it look okay but I could never really get it to look like everyone else’s and it really 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 didn’t have any at all. I didn’t understand how relationships like that worked. I would try to be nice and smile and tell them about whatever current 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 talk too, they would laugh and snicker and run anyway.

I pretended 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 in spite of me. I was invisible. I quickly learned that a better place for me was on the sidewalk up against the building with my books or in the library. Or swinging from the monkey bars alone, counting the bars in my head and seeing how many I could skip. I would watch the other kids run by in their clusters. I was fascinated by my classmates and wanted desperately to be part of a group…and I never ever was.

It’s not like we could blame it on the school, even though it was a private Catholic institution and some of the people there had money. There was never a place 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 memorized word after word, before school and after school. 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/wk, 3.5 hours per day for years. I could do back handsprings on the balance beam and full twisting layouts.

And, yet, I 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 and memorized the figures. I copied them onto paper and wrote sentences and paragraphs with them.

Reading for me was like doing a cut-and-paste into my brain. Once I read something, it became imprinted in my memory. When I tried to recall whatever I had read, I would literally see the page with the information on it in my mind. I’d read the page as a picture to get the information. I still do this, although not as nimbly. It’s just the way my brain works.

I remember being done with every assignment in school early. Always. Worksheets that were supposed to take 20 minutes were done in 3 and I had to sit and wait for my classmates. Memorizing information, which is essentially what elementary school is comprised of, was effortless. The other kids thought I was a showoff. Sometimes I wonder what amazing things I could’ve done if I had been taught challenging content at the rate at which I was capable of learning it.

Around the 2nd or 3rd grade, a kid in my class had a birthday party and invited the whole class. I was crazy excited to have been handed an invitation and I desperately wanted to go. He was a “cool” kid and I thought he lived in a mansion. The backyard was massive and had a walk out basement. They had a pinata and table full of food from which you could just take whatever you wanted. When I got there, I ran to the treehouse to join the other kids and, predictably, when they saw me, they fake screamed and ran. I was so embarrassed that I climbed into the treehouse anyway, pretending that that was what I had intended to do all along. I didn’t go over there to be included…I wanted to check out the treehouse.

I sat up in there alone and watched the kids from above. I watched them move in groups. They looked like little ants clustered around hills. Individuals 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 3 or 4 converged and started running around the yard. They ran in circles. They swirled the colors of their shirts against the green backdrop of the perfectly mowed grass. The movement of the ants was so beautiful that it made me cry. I laid down on the floor of the treehouse wanting so badly to be an ant, too. They made it look so effortless. I closed my eyes that were silently filling, spilling, and re-filling with tears and saw the swirls in front of my eyes. They were a rainbow, but without the blue. I was the blue. In my imagination I swooped down into the yard, my blue aura trailing behind me, and everyone cheered…the rainbow was finally complete and it swirled and swirled.

From a distance, I heard my name. I pushed it out of my mind. I didn’t want to stop swirling with the other colors. A hand on my shoulder pulled me from my dream and I woke to find myself surrounded by concerned adults and laughing classmates. I had fallen asleep up there and the party was over. 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, we had each other.

 

This pattern continued for years.

Around 13, things started to change for me. I had always been on the taller side, but I started 8th grade at 5’8” and by the time the school year was over, I was 6’1”. I was very tall and very thin…about 125–130 lbs. I grew boobs that were way too big for my frame. I took my gymnastics skills and became a cheerleader, the one girl that does a back handspring for each letter while the crowd spells out “Spartans” during the time-outs of basketball games. My height, athletic prowess, and ability to hyperfocus on the things that interested me made me a natural at volleyball and I started varsity my freshman year.

It didn’t take long to realize that I had some real power in my appearance, my height, and my sexuality which was intoxicating for someone who had never felt power before. I felt wanted and I had never felt wanted before. I was no longer an outcast. I was…included. It didn’t take me long at all to figure out where my worth came from…when you look like a model, people treat you differently. They want you. I was still the fucked up little weirdo that annoyed the shit out of everyone, but now my packaging was very aesthetically pleasing. The weirdo was forgiven. And that fucked me up even more.

I was then, and remain, a very fast learner, at least when I can find patterns and memorize facts. I wanted to be loved and I used what I was given, my aesthetically pleasing package, to try to meet that need. The world let me know pretty quickly what they were willing to love me for. It wasn’t my intelligence. It wasn’t my people skills. It was my physical shell. So I cultivated that for a long time in order 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, a 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 ASD.

When I was researching autism (because fact-finding is what I do) I started to see myself in the descriptions. How had I not seen this before? I had taken a Developmental Psychology class for my undergrad degree in 2000 and the only mention of autism in the textbook was a small paragraph buried somewhere in the middle. God bless the internet. As I was reading about behavior and traits and prognoses, I started to feel the unease of the little girl who had no friends start to churn in my belly. I read blogs from autistic people about 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 assessments for adults and found one that was 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 scored a 32 or above, while just 2% of the control group did. So, of course, I took the test. And I have taken it probably twenty times since…just to see. I took it again today.

I didn’t see any of the 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 love her back. She adores animals, especially baby animals, for the same 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 her 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. I wasn’t the first time and it won’t be the last.

So now I’m watching her trajectory very closely. 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 is to not let her believe them.

I have since asked maybe twenty people to do that 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. That means that it will not tell you whether you have autism or not. All it will tell you is if you self-report 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. I have a natural affinity for patterns that has allowed me to develop some pretty advanced, albeit superficial, social skills. I am functional in my everyday life and have even been called upon to help typical people who are uncomfortable in social situations. For them, those “networking” type situations are nerve wracking and energy draining. For me, the surface level interactions are the easy ones. I’ve learned to recognize predictable behavioral patterns, have developed strategies and contingencies, and have run experiments with eye contact and vocal intonation. I’m doing alright. But I still struggle with deeper level 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 has his own pathology, mind you) to see if he’ll be willing to participate more in the lives of our kids and be a more emotionally stable, present figure for them. I am failing miserably. I read books and am given advice and, no matter how many structured rules I make for my interactions with him, I can’t seem to get it right. I literally don’t understand how to communicate with him when emotions convolute the situation.

I feel like it’s an advantage to have the experience that I have under my belt. There are decisions to be made for Charly where my personal experiences will prove valuable. For example, do I attempt to save Charly the pain of feeling left out, as I felt as a child, and send her to schools that serve kids on the ASD spectrum, so that she can be around others like her and feel accepted and build her self-esteem? Or do I send her to a mainstream school where she can model the behavior of her typical peers and learn coping skills to function in a world that was not built to accommodate her? Regardless of which I choose, having an idea of how she feels on the inside of that little body 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 does absolutely nothing for me. It doesn’t matter. Even if I fall somewhere on the ASD spectrum per the diagnostic criteria, I am not suffering any distress. I have managed to extract some pretty fucking remarkable coping skills from my lessons learned the hard way in order to become a reasonable, functional and productive adult. What does matter is my daughter who has been diagnosed and how I can make her life better. She is so young and her life, thus far, has been so much better since I discovered what I did about myself. I think that this knowledge gives me invaluable insight on how to help her, which is something with which many parents with autistic children struggle. They, just like everyone around their child, simply can’t understand.

There is a degree of peace to 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 for me, it is what it is. I am who I am and its not going to change my past. But for my daughter…she will have a better future for me having walked, at least to some degree, in her shoes first.

Her favorite color is blue.

She will learn to swirl.

And I will never stop reminding her why she is valuable.


About the Author
ajAJ Kay is a mom, a baker, and a butcher, among many other things. Kay also has autism and is a prominent advocate. She is honest yet hilarious – you can check out her work on The Medium or visit her Twitter.

 


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