"You don't look autistic!" is a phrase I sometimes hear when I tell people that I'm on the autism spectrum. Another thing I hear on occasion is "But, you're not really autistic. Some people have it worse than you." Let's be real, that's a really messed up thing to say to someone. I tell people something important about myself to further their understanding of who I am and why I do the things I do, and instead they decide to assume that I'm either lying or over exaggerating. And that really grinds my gears. But to you, the reader, I shall grace you with a little bit of knowledge about who I am and my journey through self-acceptance.
When I was born, I got a little stuck. From what I hear, it wasn't pretty. Not that I would know, I was a new born baby. Luckily, karma granted my mother a little mercy after her traumatic delivery by making me a peaceful baby. I rarely cried, but then again, I rarely smiled. I wasn't unhappy, but rather, pensive. Therefore, my parents just assumed I was quiet and thanked their lucky stars that I wasn't nearly as fussy as my older sister was as a baby, but they also noticed I was not developing at the same rate that my sister had. I would act strangely upon touching certain objects or textures and I was not speaking any cohesive language yet (just jibberish). This concerned them and ultimately, at the age of two and a half, I was taken to several specialists before being granted the diagnosis "Pervasive Developmental Disorder Not Otherwise Specified," or PDD-NOS.
I went through a year of in-home therapy and a year of education at a special school for children with disabilities called "The Little Village" which has since moved locations since my attendance there. The school was actually not supposed to take any more students that year, but my mom bribed somebody with a lasagna and they agreed to squeeze me in. Whoever that was did not get their lasagna and I am terribly sorry for them because my mother makes amazing lasagna. Anyway, while at The Little Village, I was making great strides in my development and ended up graduating there with high Peabody scores. My parents were told that I could mainstream into normal public school, and while they felt uneasy about it, they agreed.
For the next nine years, I had little to no difficulty with the actual educational process that was school, but nearly all of the time I had issues with fellow students. They did not like me, and eventually I grew to greatly dislike them as well. None of them were obscenely mean to me, but many of the things they said were extremely backhanded and sarcastic, which I had trouble picking up on. Eventually this just became normal for me and my standards for friends were very low: all they had to do was agree to hang out with me, and even that was hard to accomplish.
When freshman year of high school rolls around, I am so ridiculously depressed and riddled with guilt because I was granted a transfer to the high school I wanted to go to even though many of the other students who applied did not. I felt like I didn't deserve what I had gotten, and ninth grade was just a wreck for me. May of that year I started experiencing massive panic attacks in the middle of school days. The social anxiety that I had already been experiencing had been getting worse, and I had enough. Unfortunately, my parents wanted to believe I was completely fine, because mental illness runs in the family and even though I "had" PDD-NOS I was otherwise normal. Eventually, none of us could handle how I was feeling, and the August before sophomore year I finally sought out a social worker to intake me and properly diagnose me. I was sure at this point that it was just run of the mill depression and anxiety, but when I saw a voicemail from the office and my parents didn't want to talk about it, I knew something was up.
"Julia, they said you're not depressed ... You just have PDD."
This news was crippling, because not only was I told that the feelings I were having were not necessarily diagnosable, but something I was told I had grown out of was not out of my life. I had the crushing truth thrust upon me, that I am autistic, and that probably explains why my peers shat on me for so many years, because they always knew I was different. This news alone put me in a completely different funk than I was before. I was afraid to tell people about it because of how they would react. One person forced my hand one day by questioning my knowledge on the subject, saying "How would you know if someone is autistic?" and I shouted back "Because I am!" and that's when I was questioned as to if I was just diagnosing myself and how bad it actually was, because apparently nobody can take your word when you come out as being on the autism spectrum. I told a few more people, and while some had positive and encouraging reactions, some did not. I became shameful again, keeping it to myself.
It is nearly four years later, and I am still not completely open about my disorder. If people ask if I am on the autism spectrum, I will gladly tell them I am. But I try to not go around shouting it to people as best as I can (even though I am completely terrible at keeping secrets). People notice that I talk too much, especially about my interests, and they just assume that I'm annoying. Adults notice I don't always give the best eye contact, but they think it's just because my generation is disrespectful. My friends notice that when they introduce me to their other friends I do not know that I am either extremely loud or angrily silent, but they assume that this is just me being jealous of other people in their lives. I am very open about being on medications to manage the several emotional issues that come with being a high functioning autistic teenager riddled with hormones.
"You don't look autistic" is a phrase I sometimes hear when I tell people that I'm on the autism spectrum and it puzzles me every single time because I do not know what it means to look autistic. Does autistic mean uncontrollably drooling with dead eyes? Look at any old photo of me until age three and a half and that's what you get. People are right, I could have it worse, but I am so fortunate to have experienced the early intervention that I did. That being said, I do not have it easy. My doctor says that along with being on the autism spectrum comes other mental/emotional issues such as depression, anxiety, OCD, and ADHD. So, not only am I socially incompetent, but also I have plenty of other emotional problems riddling me.
I am constantly concerned with what people think of me because I know they view my behaviors to be off-putting and strange, and I have no way of stopping who I am.
I once saw something online, comparing the autism spectrum to a toppings bar at a frozen yogurt place. Imagine that each different type of symptom and sign and behavior is a different kind of topping. Chocolate toppings can be behavioral patterns, fruit toppings are communication inabilities, and syrups are social inabilities. Every person starts off with some regular fro-yo, but sometimes you have some toppings. Sometimes there's a lot of toppings. Sometimes there are so many toppings that people forget that there's still frozen yogurt underneath there. Everyone is frozen yogurt, the toppings just make us more special. But the toppings do not define you, they're just who you are.
I try not to let my disorder consume my identity, but rather I acknowledge my disorder as a way to have control over something that makes my life a little crazier than it needs to be, as well as be able to relate to other people who have similar experiences to me. This article is not a coming out article for me. Enough people know my deal that it wasn't a big deal for me to express myself publicly. This article was more-so supposed to explain to people that I am autistic on my own terms, not just if you validate it. I have had two evaluations which denote this being the proper diagnosis and a psychiatrist who regularly sees me to prescribe me the medications I need to not be a weepy mess 24/7. Ultimately, I want everybody to know that I am valid in my diagnosis, and only wish for others to be understanding of who I am, quirks and all.
