Autism spectrum disorder (ASD) is a developmental disability that affects every aspect of my life. From nonverbal communication to social navigation to independence to sensory processing issues, my autism and the challenges coming with it are unique to me. Because autism presents on such a wide spectrum, I am not exactly sure where I fall within it. Some people use the terms “low functioning” or “high functioning”, but I prefer to just label myself as autistic. “High functioning” autism was previously known as Asperger’s Syndrome, but that term is now clinically outdated.
As long as I can remember I have always felt left out, different from my peers, and disconnected from the world around me. Because this was a constant feeling, I assumed it was somewhat normal. Going through years of exclusion from my peers and the world that I was living in, while still trying to cope with what I did not even know was sensory overload, I developed many mental illnesses stemming from the difficulty of having to navigate alone in a neurotypical world. In 8th grade, my grades ended up dropping and it was apparent that I was in emotional distress, yet still, no one intervened. At the beginning of high school was when things began to boil over. Being aware enough to know that I was different but not aware enough to know why took a huge emotional toll on me within itself. Finally, a month into my first year of high school, I was sent to a psychiatric hospital for the first time. For two years I had been in and out of different therapeutic day schools and hospitals. Seeing so many therapists, psychiatrists, psychologists, social workers, etc., and being placed on so many medications that essentially made things worse, or created symptoms that were not present before, all to still have such a large part of me ignored. Above all, I was feeling stuck inside of a system that did not even want me, while being blamed for something that was out of my control. No one understood me, and I could not understand myself. I was not getting any better yet was receiving so much treatment for the mental illnesses everyone was certain were the root of my issues. Why was I only getting worse? Why did no one understand me and how lonely I felt? Why couldn’t anyone see how much pain I was in, how much pain I was being put through because of the ignorance of others?
And so I found out that I was autistic on January 10th of 2020. This meant a lot to me because I had to advocate for myself so much to be taken seriously. It was the second time I was evaluated for autism. The first time that I was tested, my intelligence was mistaken as manipulation, seen as me knowing “too much” about my own experiences. There is racism within the neurodivergent community, and professionals often hold an unspoken bias and expectation of what special needs “should” look like. Also, the fact that I had such a long and extensive history of mental illness overshadowed my autistic traits. Although the sole diagnostic attention should have been for autism, with my history it rarely could be, and this did a massive disservice to me. People, professionals included, often become so preoccupied with what the normal should be, instead of what my normal actually is. I was swept under the radar once again, feeling confused and angry. I just wanted to be seen as who I was, and to not have to give more or less of myself due to what someone else could not understand. I had known I was autistic long before receiving a diagnosis, and considered myself a part of the autism community preceding validation from a psychologist. Unfortunately, many people believe that autism should only look one way, or the way that they have seen it look. Many people believe that those with autism are not able to articulate or express themselves, that they are not intelligent or are only knowledgeable when it comes to their special interests, or even that you have to “look” autistic for you to be acknowledged as such. It was once thoroughly believed that autism was only a male condition. Furthermore, many people also believed that autism could only be present in those who were white. As a Black girl with autism, when you see little to no versions of yourself in the media, it is difficult to understand your place in existence, or even if you are supposed to be there. Asking that question for so long, “Am I even supposed to exist?” made me feel like a mistake. It made me want to be quiet. Because for a very long time, I did not understand that people of color, let alone women and girls of color, could even be autistic.
I remember reading about ASD and how autism presents differently in girls than in boys. I remember reading about gender bias and racial disparities causing so many people with autism to navigate much of their life without an accurate diagnosis, therefore receiving no intervention, support, or acknowledgement for their undetected autism. I remember watching Ted Talk videos on YouTube, and finally feeling like so much of me made sense. To me, the day that I first found that information was the day that I received an autism diagnosis. I understand and accept that I went through the things I have for a reason, because if my journey went in any other direction, I might not be here sharing it. I appreciate the time you have given me to express myself and a piece of my story. I hope that my experience does not have to be everyone else’s because this is not at all what mental health should be. I encourage you all to advocate for yourselves in the ways that you know how.
I would like to close out with a quote from Dr. Stephen Shore, an autistic professor of special education at Adelphi University. “If you’ve met one person with autism, you’ve met ONE person with autism.”