My normal was not everyone else’s normal. Even worse, it became evident that people that though my normal was something that needed to be fixed. This life that I had been living all this time was deemed completely wrong in other people’s lives and I was really confused as to why people would be afraid of me. Autism is not at all harmful to myself or others in anyway. The only thing it did was made my upbringing vastly different from the average person. I understand that many people may not have an idea of how so I hope I can shed some light on this issue and enlighten people on what living with Autism is really like.
So, what exactly is Autism, you might be asking. Autism, which has been recently dubbed as Autistic Spectrum disorder, is a term that represents an array of behavioral disorders. The one I was born with is known as Asperger’s Syndrome which is on the end of the spectrum where people with Autism have the most cognitve function and awareness. The symptoms of Asperger’s Syndrome include social awkwardness, inability to empathize, failure to make friendships, trouble making eye contact. sticking to routines, poor motor skills, literal interpretation, narrowed interests, and even selective mutism. In other words, I was born as an extremely socially awkward person in a very social world; a round peg sounded by a thousand square holes I was meant to fit into but, never could.
Trying to adjust to the world, being the way I am, was a challenge for both me and my parents. They tell me of one time where they had someone over our house named Ms. Cohen who sat with me for seven hours straight. She was basically observing me and recording my habits and inform my parents on what she found about me. Not to mention the amount of additional aid that I needed to get through grade school and middle school. My father tells me of all of the times he had to argue with my teachers, principal and even school district officials to get me all of the help he could. When they wanted to do all of these half-measures with me, he stood his ground and told them to give me everything they have.
Another way that my Asperger’s was shown in my life was my eating habits. Because I am more susceptible to fall into routines, I would only eat and drink specific things, sometimes only in specific places. One example of this is when we would get pizza only from Santucci’s but, I would only eat it in the car so my mom would have to drive slowly so I would finish a slice. This lead to me and my parents taking me to a clinic in Hershey, Pennsylvania where we would sit for hours at a time and eat so many different things. This would be the first time I would have many different fruits, vegetables, meats, juices, and many other things.
My most memorable example of this was during the fifth grade all the way up to my high school years. Every Thursday, along with two or three other boys with Autism, I would go to social skills workshops facilitated by a therapist. I remember my first few times going there when we would be working on certain skills like starting conversations, making new friends, and even greetings. I especially remember the difficulty. I struggled a lot with trying to learn these skills and it was jarring to know that this was easy to nearly everyone else outside of that room. This was normal to them but, it was completely new to me. This was the first time where I was trying to fully learn how to socialize with people and, to be honest, I am still learning even now.
Another thing that I’ve struggled with as I have lived with autism is the stigmatisms that go along with it. It’s not just from people that I see in my life but, also from bigger organizations that claim to be on my side. A major example of this is a commercial titled “I am Autism” by Autism Speaks, an Autistic Advocacy Organization. I remember the feeling of watching it for the first time on YouTube. This is a quote from that ad: “I am autism. I have no interest in right or wrong. I derive great pleasure out of your loneliness. I will fight to take away your hope. I will plot to rob you of your children and your dreams. I will make sure that every day you wake up you will cry, wondering who will take care of my child after I die? And the truth is, I am still winning, and you are scared. And you should be. I am autism. You ignored me. That was a mistake.”
As someone who has grown up with Asperger’s Syndrome for their entire life, I felt like the video was about me. It was almost as though I was the one who was robbing people of their children, I was breaking families apart, and I thirst off loneliness like water. It described me like I was a disease or a monster, one that people should get rid of but, what came after was the worst part. In response to the brooding voice that was representing Autism, fathers, mothers, siblings, and even friends of the people with Autism in that video rallied to combat Autism as though it were Cancer or heart disease. They were talking to it like it was a pandemic, one that needed to be cured. After the video ended, the shock and fear that I had felt in the beginning turned into utter frustration with the makers of this video. I was angry not only in what was said but, I also felt like they never expected me to find it. It was almost as though they were probably talking to my parents, trying to convince them to “fix” me. The ad almost seemed to imply that I cannot be loved fully by my parents because I have Asperger’s Syndrome. It felt awful knowing that this is how I am perceived.
Now, all of this may seem very difficult for me to have pushed past all of these obstacles but, it is not all that bad living with Asperger’s Syndrome. In fact, in terms of the spectrum of Autism, Asperger’s Syndrome is on the end of the spectrum which shows higher cognitive function and awareness. If I was born with a more severe form of Autism, I could have struggled a lot more with this disorder. Because of this, I do not really feel like Asperger’s Syndrome is too much of a problem to me at this point in my life.
Some parts of living with Asperger’s Syndrome are actually quite enjoyable. Because my interests are often narrow, I would have these phases where I would dip into any number of fandoms and hobbies. These would include various TV shows, movie franchises, video games, literally anything that would contribute to one of my eventual symptoms of Asperger’s Syndrome: nerdiness. I still remember all of the phases I had and am still going through, whether it was my fascination with model trains when I was toddler to my love for Avatar: The Last Airbender (I’m never getting out of that phase). It was like riding various waves of joy as I dipped in and out of each phase. Once again, this is something I still experience and really enjoy about this.
There is a large shortage of voices like mine that are representing what having Autism means. The research, case studies, diagnoses, and all the other scientific study is good but, I really think there needs to be people like me who actually have Autism to speak up about what it is like living with it. And this does not just apply for Asperger’s Syndrome but, for all disabilities in general. This large amount of presumptions and preconceptions about disabilities leads to harmful consequences such as the school shooter stereotype being linked to Autism. No one should ever have a stereotype like that over their head, especially over something that they did not choose to have.
Another thing is that people need to understand that there is a difference between awareness and acceptance. Advocacy organizations bring awareness to Autism but, they never really push for more acceptance of it. Instead organizations like Autism Speaks, who made the ad at beginning of this piece, seem to push this agenda that people like me need to be fixed or cured. This eliminationist agenda never feels good or reassuring to anybody with this disorder and really just gaslights these people about their whole existence. We should not be trying to fight to fit in this square hole that society is presenting us. Instead, society should be learning to accept and fit better around us.