Autism Acceptance Month: My Undiagnosed Childhood Experience

Honestly, I can’t remember a time I didn’t feel different in some way. Siblings are frequently different from each other, but I always felt extra different, without every knowing exactly why. I was an overly passionate child: quick to anger, quick to cry, and quick to laugh harder than anyone around. Once I started school, the differences between me and the other children became more obvious. I remember standing on the playground in kindergarten, feeling overwhelmed and confused. The other students picked up on my differences quickly, and that’s never a good thing. Above all else, I simply couldn’t understand why I was different and what it was that other people did that was so different.

Deep pressure therapy is used to help calm the nervous system. I believe that’s what I was trying to achieve here, as a toddler.

Physical comfort is not something I can remember. Not for periods of time long enough to make it into my memory, at least. In fact, I distinctly remember several times in my life where I would desperately want to strip naked and stand in the middle of a room with my arms and legs spread so nothing was touching my skin at all. The fact that other people seemed to be comfortable in their clothing all day confused me greatly. I remember always being able to feel every article of clothing at all times. When I had to start wearing bras, it got even worse. (Technically, there was nothing in dress code about needing to wear bras, but society, my parents, and bullies said I had to.) Bras are snug and not designed to be comfortable, just supportive and shaping. As I talk about in this post, my breasts aren’t an “all in front” shape, so I already needed a larger bra than it looked like I did. I would get slightly larger bras than that, because it was the only way for me to tolerate them. Shoes and socks were another mental battle. I loved cute socks (still do), but I hated having my feet contained. Collecting cute socks helped me handle my aversion to them, and toe socks were a godsend (they felt less confining as I could still move my toes separately). My shoes, once I had free rein to pick them myself, were always two sizes too big and “skater shoes” that already fit looser than normal.

Being physically overwhelmed at all times makes everything else a serious struggle. I would stub my toe, not even that hard, or get a paper cut and burst into tears. Sure, the toe or finger didn’t feel great, but the tears were because it was just one more thing on top of everything else I was already feeling. My system would overwhelm, and inevitably spill out of my eyes. Unfortunately, this led to everyone assuming I had a low pain tolerance, until college.

My eating habits have always been odd. When I was a baby, I used to eat every food that was given to me, except peas (I have always hated cooked peas). As I got older, I got picky. Extremely. Being a picky eater is actually atrocious, and I despised it every single time food was involved. Most of my aversions had far more to do with texture than they had to do with taste/smell. The more complex a flavor profile, however, the less I like the food (even now). Complex flavor profiles are overwhelming and send me into sensory overload. Being a picky eater is embarrassing. Thankfully, most of the foods I liked were pretty standard “this is what kids eat” foods: pizza, hamburgers, mashed potatoes, etc. I despised chicken nuggets, the bread crumbs and non-whole chicken was the world’s worst texture profile. Tubed meat products (sausage, hot dogs, bratwurst, etc) are also something I have never and will never like to eat. I’ve only ever managed to eat one hot dog without vomiting, and it was because I was starving and drowned it in ketchup. Every other hot dog makes me vomit with the first bite, due to the texture alone. (My cousins that I watched a lot would eat cold hot dogs from the fridge, and the thought of it made me gag.)

Little me, doing my backbend “crawl”

Movement was always my number one priority when I was developing. Before I learned how to crawl, I realized that I could kick my feet and end up on the top of my head (in a back bend) and scoot around the floor. When I was walking, I frequently would walk around on the very tips of my toes. My parents said I had “expressive feet” and I would dance around on my tip toes when I got excited, and wiggle from head to toe. Sitting still was impossible, and still is. Movement is something I do constantly, but I developed subtle movements to satisfy that urge without being “bad:” tapping my foot, wiggling my toes, wringing my hands, tapping my legs, etc. Often, most people have no idea I’m moving now.

Little me, on my tiptoes

School was atrocious. The lights in the classroom would give me headaches (thanks fluorescent lighting), the children were mean, and I was smarter than many of my elementary school classmates which meant I was frequently bored. Thankfully, my parents made sure to tell my teachers I needed extra work to stay focused, so that last point wasn’t the biggest challenge. I was often in trouble for talking or wiggling around too much, and as I got older I got in trouble for not finishing homework.

Bullying was a major problem for me. I went to public schools from October 1995 until May 2008. I started kindergarten a month late because we had moved at the end of August or beginning of September, so my parents gave me time to adjust to the house before also throwing me into an unfamiliar routine (school). Unfortunately, most of the students had formed cliques by the time I started school. I did make a few friends, one of which was one of my best friends until we were 14 (long story as to why that ended), but the bullying started immediately. Since I’d never gotten significant time to interact with children my age, outside of my family, I didn’t actually recognize it as bullying. All I knew at the time was that the other kids didn’t seem to like me much, their comments made me feel yucky inside, and I wished they wouldn’t talk to me. The bullying escalated in 4th grade, which is when I developed acne and needed glasses for the first time. Most of the bullying wasn’t focused on my acne or glasses, but on my “general appearance” (such as clothes, height/build, etc), and every day was full of comments about how ugly I was. I had no idea why they targeted me, but looking back it was likely because I was different. (And most definitely not, as the adults in my life constantly tried to reassure me, because they were jealous.)

When I got to junior high, the bullying was less direct, but still constant. High school, the bullying continued, and I also became the victim of a severe narcissist. I had no idea why I couldn’t fit in, but I hated it. My depression became severe, and I used several less-than-healthy coping mechanisms for it. (I never have tried and never will try any recreational drugs, just to be clear.) Since I already didn’t fit in, I chose to “give people a reason” for me to not fit in: I dyed my hair constantly, dressed in an emo/goth/punk fashion style, was purposefully “weird” and “crazy” in my actions, and would avoid telling people anything that was my favorite because I didn’t want to add fuel to any fires. It kinda worked, and I became “weird Lizz.” The bullying didn’t stop, but it changed, and I was still in the twisted “relationship” with the narcissist.

My last year of high school, the abusive relationship ended for the final time, and I found people my age to hang out with that genuinely liked me for me, and didn’t bully me at all. It was amazing! They were completely okay with my oddities. I dated a guy with an Asperger’s syndrome diagnosis, and I was honestly confused at how he was “different” most of the time. Even when we broke up, we stayed good friends until graduation. I wonder if we gravitated towards each other because we were “different” in many of the same ways.

Moving to college, over 1000 miles away, gave me great hope. Unfortunately, my first year of college, I joined a club that was run by another psychopathic and sociopathic narcissist (he fit both definitions for “psychopath” and “sociopath” as defined in this article). My personality type is exactly what a narcissist looks for, so I once again fell prey to one. The only good thing that came from that club was that it was where I met Dan (my husband). Thankfully, I had grown enough as a person that (with Dan’s help) I was able to get myself out of that situation. Now, I can quickly recognize narcissistic abuse and usually escape before I’m caught up in it.

Dan was the person that got me to start recognizing my strengths, forced me to seek help for my health problems, confirmed that my pain tolerance was higher than average (doctors also confirmed this my first year of college), and the only person I could be 100% myself around. It was such a huge relief to be able to drop my mask and be my genuine self, without being judged for it. I could wiggle, squeal, giggle, make weird noises, break out into random dancing, and talk for hours about one thing without him making me stop. The only thing that wasn’t okay with him was the picky eating, because he eats everything! Once we started cooking for ourselves, he gently helped me to expand my palate and would always ask why I avoided foods before suggesting I try something.

Fast forward to my mid 20s. My mental health was struggling, badly, and my social anxiety was getting intense. One day, my mom shared an article written by an autistic boy, asking why being himself was “bad.” Reading the article, I realized I had all the same questions, and I realized that I needed to know some more about autism because I related more to this boy than I was “supposed to.” Other people kept sharing articles about autism, randomly (it was not April), and it felt like a sign. Finally, I started researching it myself. Then, one night while Dan was sleeping next to me, I found a list of signs of autism in girls and women, and I started bawling. I was reading a list that described me 100%. Out of the huge list of signs (probably more than 100), there were only a few that didn’t fit. I woke up Dan and said “I think I’m autistic,” and made him listen to the list. We talked about it more, and I decided I needed an official diagnosis (though, Dan agreed with me and didn’t think I necessarily needed a professional diagnosis). With the worsening social anxiety, I was hoping I could get some useful tips from the psychiatrist that diagnosed me. Unfortunately, I was wrong.

After several hundred dollars, and more than nine hours of neruopsychological testing, I had my diagnosis. The therapist said “unfortunately, you have autism. I’m sorry.” I was so excited to have an official diagnosis, I only subconsciously picked up on how he’d delivered the message. I picked up on it just enough that I prevented myself from bursting into happy tears until we got to the car. Suddenly, all my “why don’t I fit in” feelings were validated, and I knew the answer! I was neurologically different from my peers, so I didn’t fit in at all. My view of and experience with the world was completely different from theirs!

I haven’t told a lot of people in my life, because it hasn’t felt necessary. The ones that do know have, at the minimum, been nice about it, and some have even been amazingly supportive. I still haven’t found a professional with enough autism experience to help with the specific social anxieties I have, but just knowing I’m autistic has helped me to give myself grace and lessened some of them. I’m not ashamed of my diagnosis, it just hasn’t been relevant in most of my conversations!

Hello, I’m Lizz, I’m autistic, and I’m awesome just the way I am!

See more posts from Autism Acceptance Month:

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