“What living with autism feels like” by Anonymous Teen
I have Asperger’s Syndrome. It’s a high functioning autistic disorder. Some people might not think of it as a chronic illness. But according to the Centers for Disease Control and Prevention, this is the definition of a chronic disease: “conditions that last 1 year or more and require ongoing medical attention or limit activities of daily living or both.“ (CDC, “About Chronic Diseases”) So yes, generally autism isn’t considered a chronic illness, but according to the previously mentioned definition, it should. It lasts your whole life because it can’t be “cured”. I take psychiatric medication to manage my symptoms, and it limits my daily life to an enormous extent. I have always felt like an alien around people, and I was never able to understand them, but the thing that was most devastating was that no one understood me. I was viewed as weird, quirky, and not many people wanted to spend time with me.
Living with high functioning autism is extremely challenging. I know when people are making fun of me, or when they just don’t like me, but often I have no idea why, because I don’t understand them. I don’t get how they can speak sarcastically or in metaphors since I have never been able to recognize either of those. Another “disability” that comes from my diagnosis is that I cannot read body language, facial expressions, and it is often very hard for me to identify what the other person is feeling. The fact is that I don’t do well with people. It’s usually pretty obvious that I’m different, but generally people don’t think that I am autistic. That is because I can pretend very well. I am able to act like I am normal, since I was diagnosed as a teen, and therefore special treatment from my family was not a possibility. I had to watch people in their daily lives to know how they react, what they do, and I had to memorize all of it to seem normal. Pretending to be neurotypical is like a full-time job. It takes an enormous amount of my energy to act like others and be able to fit in at least a bit, and it is worth it only for a short time, because if I decide to pretend all day, I will be fully broken when I come home from this “job”.
The thing is, I always knew there was something wrong with me, I just didn’t know what it was. When I was 14, I got diagnosed. I felt relieved, but also scared of what would come next. It was like I finally knew what was going on in my head and that there is a valid reason why I am so different from everyone I knew. I felt like I was free after spending my whole life behind bars, not being able to do what I want, feel what I felt and act as I wanted. In the next few weeks, I learned everything there is to know about Asperger’s Syndrome and autistic disorders. As I was reading the articles and books I felt like those people truly understood me. Nevertheless, I was also thinking about what I would tell people, and whether I should tell them, since it is such a huge part of my personality, but it still is a psychiatric diagnosis, and I had no idea how people would react. I decided to tell my closest friend, and she took it really well, but I realized I didn’t want people to know something so personal about me. I just feel like if everybody knew, they would act differently around me, and that is the last thing I wanted.
I am 17 now and have known about my diagnosis for more than 3 years. I have dealt with it, but I still usually don’t tell people, especially my peers. The fact is, that most of them are not mature enough to not make fun of me, or bully me for it. I have heard them say things to their friends like: “don’t be autistic”, “you’re so autistic dude”, “bro, are you autistic?”. And they always mean it as an insult or are mocking each other, when in fact, they know nothing about the diagnosis. They had no idea that I have autism and can hear them and every time they said something like that, it hurt me because there’s nothing I can do about it. I can change my hair, my clothes, even how I act, but I cannot change the fact that I have Asperger’s Syndrome.
Due to this, I often get jealous of neurotypical people. I have been imagining what it must feel like to be “normal”, to understand others, to know exactly what to say and when or to be able to help people, because that is exactly the thing that hurts. It often happens that people are sad or angry and I’m there, and I don’t even realize it, because I just don’t have that skill set. And even if I saw that they were really sad (which would be basically a miracle) I wouldn’t know how to help. I have read so many books on what to do when people don’t feel good, on how to react and make them feel better, but it always feels awkward for me. I have a script prepared for these situations and every time I use it, I sound like a robot, reciting what I have learned. It truly pains me that I am not able to help them in these situations like any other person could. This applies especially to the people I care about deeply, and even though there aren’t many of them, I still want to be able to make their lives easier. That is exactly why I decided to dedicate my life to medicine. Because if I can’t help people emotionally, I can surely learn how to help them feel better physically.
It’s also important to note that there are certain positives to having Asperger’s Syndrome; it’s not entirely negative. For instance, when I am passionate about something, I want to dedicate every minute of my life to doing that. This really helps me set goals and achieve them in the long term. I pay very close attention to details, which allows me to remember things that others miss, and I have a very strong sense of justice in daily situations. But that doesn’t mean that living with autism isn’t hard, challenging, and so, so exhausting.
Sources:
CDC. “About Chronic Diseases.” Centers for Disease Control and Prevention, 4 Oct. 2024, www.cdc.gov/chronic-disease/about/index.html.