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Before and After Diagnosis

By Miriam

My diagnosis story is far from a traditional one. I was not diagnosed with autism as a kid. No one pointed out to me that I am autistic or pushed me to seek a diagnosis. Instead, I first sought an autism diagnosis on my own right as I was transitioning from being a teen to an adult. It took a few years to actually get the diagnosis, but I was still just barely a minor when I started the process of researching how to do so. 

During my senior year of high school, we were doing a unit on the brain in my science class and autism came up. For the first time in my life, autism was presented to me, not as a bad thing full of deficits. My teacher took much more of a neurodiversity approach. We talked about how autistic minds see the world without degrading autism that day. I remember that the more my teacher’s presentation went on, the stronger the feeling I got that it was my brain being described in the slides about autism. It was as if someone was speaking out loud about how my mind works. After class, I talked to people close to me to see if they thought I could be autistic before more seriously pursuing a diagnosis, but something immediately felt so right and continues to feel right when saying I am autistic. It was just internalized ableism and degrading misconceptions and stereotypes that were making me feel hesitant at first in seeking the diagnosis. 

There is another layer that makes my story unique. Early in elementary school, I was evaluated for and accepted into their mentally gifted program. I had spoken early as a kid and had gotten high grades throughout school. Academics, in general,  came so easily to me growing up, but not social skills beyond aspects of professionalism and while doing structured activities (my social skills in casual situations have improved since then, though). I was good at following the rules in school and not getting in trouble, which required some social skills to do, but I was not as good at more casual interactions growing up. My teachers just wrote this off as me being shy while often saying how incredible my brain was. I was complimented for being hardworking and going beyond the teacher’s expectations with my work, even though I did not consciously intend to. It feels weird to bring up teachers praising my mind because besides lacking modesty, the way my brain works has always been my normal. I never really understood why fellow students got lower grades or struggled with the academic work I found so easy to complete until I was much older and faced some especially tough teachers in college. My brain just seemed to be different and processed the schoolwork more easily than my classmates. I never thought growing up that my perceived shyness was linked to how my brain works, though. I just disagreed when people said I was shy and had no word to use back then instead. Meanwhile, I saw how my brain works as my main strength growing up as someone with a rare set of birth defects that made the rest of my body for the most part less functional. 

Part of me thought getting an autism diagnosis would take away my ability to say my brain is one of the few parts of my body that works and is not negatively affected by a medical condition. I used to sometimes tell myself prior to seeking the diagnosis that even if my body is barely working, at least I have a really strong mind. Talking about this years after my diagnosis, I now know that if anything, autism is what makes my mind so strong. The problem here is not me being autistic, but that people growing up taught me to see autism as a bad thing when it is not. It took a year or two, but the more I learned about autism after my diagnosis, the more I realized the wonderful ways my mind works that teachers used to compliment me for are mostly linked to me being autistic. Being able to passionately fixate on a topic or goal produced better quality schoolwork. Even if the homework was boring and tedious, being rule-bound growing up had me telling myself I needed to do the homework to get high grades in order to get into college and be successful post-graduation. It wasn’t until I was older that I realized going to college doesn’t guarantee success the way society taught me to believe, but being rule-bound to that social norm as a kid stems from autism. While stimuli sensitivity can also cause discomfort or lead to overstimulation sometimes, it also makes me a really good video editor, photographer, and artist. When I go to remove background noise from audio, my ears pick up subtle differences other people miss when listening to the same audio. My attention to the visual details helps me frame photos and video clips better. I can learn coping skills to avoid overstimulation and set boundaries to not go past my limits while also enjoying the work my sensory sensitivity to audio and visual information allows me to create. 

While I have found strengths in my autism, I have noticed some people immediately make negative assumptions about me sometimes when I disclose being autistic now. Whereas before the diagnosis, teachers would compliment how my brain works, I had one college staff member assume upon just meeting me that I am bad with time management. Anyone who has gotten to know me is aware I not only get tasks done by a deadline but also that I often assign myself work to do in my free time. Instead of getting to know me, this person just assumed based on knowing I am autistic and working previously with autistic students that I needed her help to plan out when to do my homework. Some fellow autistic people do need that type of support, but she could have just asked me first or taken the time to get to know me instead of directly her incorrect assumption that all autistic people are bad at time management and telling me to schedule a time with her to make a calendar or planner together. I also had someone close to me say years after my diagnosis that I must to an extent lack empathy just by being autistic, despite saying the opposite when I was younger. While some autistic people do have issues with empathy, it is a stereotype to assume we all lack it. In reality, our empathy can be even stronger and deeper than neurotypical people sometimes. I know that I care too much about other people and feel upset watching someone get hurt or stressed out by something. I do think about how my actions can hurt another person and feel really bad if I do accidentally hurt someone. Anyone who says I lack empathy does not really know me either, yet people will make these negative, incorrect assumptions about me when I bring up being autistic. 

I wonder how I would approach these negative stereotypes if I had grown up being diagnosed with autism at a younger age. Sometimes, I wish I had been diagnosed sooner in order to access resources in pediatric care for autistic people that are often not found in adult care. For example, I was recently looking for an occupational therapist who is experienced with autism only to come across pediatric ones and not ones for adults like me. However, if I had grown up knowing I was autistic, then I would have had these stereotypes applied to me from a very young age. My self-esteem would likely be very different now if I had been approached that way when younger instead of teachers saying how wonderful my brain was prior to my diagnosis. By being diagnosed as an adult, I got to witness the contrast between people praising my mind before diagnosis, and some people now degrading my brain before even meeting me when they hear I am autistic. My brain did not suddenly stop doing the wonderful things teachers used to compliment me for. All that changed was me being diagnosed.

This opened my eyes to how much advocacy work needs to be done to educate people about what it actually means to be autistic. I had a lot of misconceptions about autism myself before being diagnosed that I had to unlearn. I don’t mind facing those degrading stereotypes when being open about my autism, because being open it also teaches people that an autistic person can look like me. I don’t fit even some of the more positive or neutral autism stereotypes, but I am definitely autistic. 

I have already gained so many benefits these last few years since my diagnosis from knowing I am autistic and learning from fellow autistic people. I finally know why I got so many unexplainable headaches growing up because when I started coping with stimuli to avoid overstimulation, I stopped getting headaches mostly. I also know why I struggle to read while music is playing now. Growing up, teachers insisted on playing music during class helped us learn. I found the music was a distracting stimulus that made it harder for me to focus on word-based tasks like reading or writing an essay, though music is helpful and enjoyable at other times. I now know why I pick up accents easily when hearing someone speak only to forget how to speak in that accent soon after the person leaves. That was likely just echolalia, an aspect of autism, which also helps explain why I was really good at being in choirs growing up and not as good at singing solo. The more I learn about autism, the more previously unexplainable parts about myself finally make sense. It explains my strengths, challenges, and neutral aspects of who I am. Autism is not a bad thing and I don’t even like calling the aspects of its deficits. It’s simply how my brain works, even if having that label changes how people view my brain. Knowing I am autistic allows me to understand myself more and embrace who I am, which helps me better navigate the world.