A lot of people have asked me to explain what has lead me to this point as far as knowing that I have autism, experience with doctors and other professionals, and the struggle of dealing with masking (copying neurotypical behavior in order to hide or “mask” your autism).
I learned to mask mostly because of the way I was raised. In a lot of ways this is a good thing because now I can be a functioning member of society without extra effort on my part learning how to act in a way that is socially acceptable. There’s a balance, though, and I was never really able to find it. Masking has made it so that I have been alone with a lot of my struggles as an autistic person. You tell someone, “I can’t handle being in this room, it’s too loud,” and they say, “Well, you look fine.” Maybe I look fine, but I’m not fine at all. This issue did take care of itself a little bit because the older I got the more intense my autistic behaviors got and the less I was really able to hide them. I started having a crazy amount of panic attacks (at least one every day at one point in my life) and I started having tics when I was 15 (I now have Tourette’s). I also have ADHD, and having ADHD and autism and trying to be successful in school without necessary accommodations is literally impossible.
Everything kind of slowly went downhill from about age 13. I always knew I was different, but when you start to get older and social demands get higher and you’re expected to integrate yourself into a society of neurotypical people, different becomes bad in the eyes of most everyone you know. When you’re a child with high functioning autism, you have some weird behaviors but everyone expects you to grow out of them. What happened to me was that I never grew out of them at all, but I learned to be a person that made other people comfortable at the cost of my own mental health.
I first had symptoms of anxiety when I was about 8 years old. I had thoughts of self harm for the first time when I was 8 years old. I had thoughts of suicide and actually did self harm for the first time when I was 12. The first time I had a plan was when I was 14. The depression, anxiety, and suicidal thoughts not only got worse but did not go away. I was extremely depressed and on and off suicidal for years. About 3 months ago I spent a week at a mental institution because I was so suicidal I was actually too at risk to stay home.
I realized that I was autistic only this year. I haven’t actually known for that long. What happened was that I constantly felt like something was wrong with me, but I couldn’t figure out what it was. I had done my own research and learned about every possible mental disorder I could have except for one. Our society is very uneducated on ASD and there is hardly any representation of ASD that is normalized among the majority of people. For a long time, I really didn’t know much about the disorder beyond a few basic facts that most people know and the knowledge that most stereotypes about ASD aren’t true. When I heard the word “autism” I pictured a child screaming and rocking back and forth in a corner. That’s definitely the case sometimes, and that’s ok. But what I didn’t realize is that autism is also the quiet kid in the back of the class that’s obsessed with anime and always has greasy hair and autism is also your local barista with perfect social skills and autism is also your 50 year old neighbor that talks WAAAYYYY too loud. Autism is more common that green eyes. It is under diagnosed, misrepresented, and vastly more complicated than most everyone realizes.
When I had read about autism in adolescents and females, I was absolutely shocked. I had no idea that there was even a label for everything I had been living through my whole life. Some people don’t like having a label and find it restricting, but that’s because of the fundamental belief that autism is bad, that it is a tragedy, and that it limits your ability to meet your personal goals. Autism is a gift. However, it’s a gift that often comes with a pretty overwhelming price. Once I realized this and I was finally able to understand who I am and why I think and feel and behave the way I do, I was relieved. But I couldn’t fully enjoy that relief because I did not have an official diagnosis to validate what I already knew, and I was still expected to behave like a neurotypical person.
Since I was 15 I have had a total of 6 counselors/therapists (maybe more?) and I haven’t gotten the results I needed out of any of them. I have had a HORRIBLE time with the medical community. I’ve tried 4 psychological medications, 2 of which gave me serotonin syndrome. The first one had me shaking uncontrollably, “getting sick” for hours, and then in the ER. After that, the same thing happened again, except I went straight from the ER to psychiatric care. If you want to hear more about that later I can give more detail, but it was a horrible experience and not the best option for someone who is autistic. While I was there I tried 2 other medications, which made me feel horrible and sick. Overall, we had kind of tried everything, and nothing was working. My mental health was failing miserably and we had no options anymore.
I finally got an appointment for a full psychiatric evaluation, but it was months away. And those months of waiting were full of horrible emotional episodes, debilitating exhaustion, and, of course, a dangerous amount of anxiety and depression. I was finally officially diagnosed and told that I would apply for disability less than a week ago. It’s one of the best things that ever happened to me. I cried.
After having an official diagnosis I feel like I can give up the charade of pretending to be neurotypical and live the way I’ve needed to live for a long time. I can also be a spokesperson for the autistic community. I can now find the balance between being a functional member of society and being my autistic self without having to pretend.
That’s what I want for other autistic people and parents of autistic people who may run across this blog. Being autistic is not easy. It’s complicated and often exhausting. It often requires a lot of effort to be happy and healthy when you have ASD. Of course every autistic person’s life and experiences are going to differ from mine. Some people get diagnosed early on in life and they feel that they’re capable of things that they’re told they can’t do. Some people don’t even know until they’re seniors and then it’s an explanation for their whole life. And then some people are like me, they struggle for years and when they’re diagnosed they feel like they can just be who they are. But regardless of the details and the situation, I fully believe that every autistic person has a place in this world where they are safe and happy and healthy, and my goal is to help other autistic people and their parents find that.