I wanted to share my story about how I was diagnosed with Asperger’s Syndrome. One of the reasons I want to share my story is because of a meeting I had with a young man named Avery a couple weeks ago. I learned about Avery through Facebook, where he and his family maintain a page about Avery’s Project for autism awareness. Avery is from Springdale too and he has Asperger’s. I emailed his mom to see if we could meet and we ended up meeting for ice cream at Braum’s. Avery told me about his project to raise awareness for individuals with autism, his love for animals, school, and his different experiences. I shared with Avery that I was a basketball coach. Then, I opened up with Avery about different examples of having Asperger’s in my life. When we were leaving, Avery’s mom asked him what he said to people when he gave his autism awareness talk: “My name is Avery, I have Asperger’s, and I am not ashamed.”
In addition to my meeting with Avery, I am motivated to tell my story in order to explain certain behaviors that some people may identify as socially unacceptable, or unusual. I am also aware of the stigma associated with mental health, psychiatrists, and counselors. I am far from an expert on autism. I don’t want to talk about the cause, or the cure, or that some people think autism is an excuse for poor behavior. I am an expert on me. No one knows me better than I do and I definitely don’t know anyone else better than myself.
A psychiatrist diagnosed me with Asperger’s Syndrome about nine months ago. I am 23 years old. Obviously, I had a lot of interaction with individuals in the medical field and in education prior to being diagnosed. If you know my family, you know that we know a lot of doctors. It is not that everyone I interacted with, like my parents or teachers, missed out on something. When I moved up to Whitewater, it was the first time that I had ever been in a completely new environment with no one around who knew my intricacies and habits. I met several new professionals who immediately identified me as an individual with Asperger’s.
High School: What I remember most about this time was people always telling me to “stop slacking”. I remember not being able to write papers in AP Literature within the assigned time period because I would get focused on the ticking of the clock and counting how many ticks it made. I would focus on the light that was flickering. I would watch the hands on the clock as they moved. That girl next to me was smacking her gum. I could hear that other kid texting on his phone. The teacher was typing on her computer so loudly. I remember falling way behind in a self-paced Computer Applications course. I remember moving my desk next to my chemistry teacher’s desk. I remember missing basketball practice because I had to stay in a classroom to catch up on my homework. My problems in the classroom continued throughout high school. And I’m smart. So it wasn’t the material that was giving me problems. I graduated with well over a 4.0 and went on to college.
College: Hendrix was tough. I was overwhelmed. The school material was easy. The environment was the most difficult thing I had ever encountered. I hated being at school. I hated living in the dorms. I hated basketball. I did not have a clue of what to make of it. The summer between my freshman and sophomore year, I began treatment for anxiety, although that is not what I identified it as. All I knew was that this feeling was getting the best of me. My stomach would feel funny. My heart would pound. My sophomore year was the year I punched the wall at Millsaps after our loss in the semi-finals of the conference tournament. In my junior year, I had to start seeing a psychiatrist. She diagnosed me with depression and changed my treatment. She also thought that I was under the influence of illegal drugs and wanted me to start taking voluntary drug tests at her office. No thank you.
Post Grad: Between many doctors visits over the summer of 2012, a psychiatrist diagnosed me with Obsessive Compulsive Disorder. He changed treatment and sent a letter to a nearby psychiatrist in Whitewater, WI. My first visit to this new doctor’s office was to meet with a counselor. She said that I had Social Anxiety Disorder. When I met with my new psychiatrist for the first time, we talked for a little bit then he brought up Asperger’s Syndrome. He said that I met the criteria for Asperger’s Syndrome and that was as official as it needed to get. He pointed me in the direction of an online forum for individuals with Asperger’s and other Autism spectrum disorders in addition to encouraging me to learn more about Temple Grandin. At first, I thought he was probably wrong. After all, every other doctor had said something else, so why was this guy to be right? I spoke to someone I trust about knowing who was right, and this person told me that I had to use my E.Q. (which apparently stands for emotional quotient) and just say whatever felt right. I spent a lot of time reading about Asperger’s and reading a lot of blogs written by Aspies. I found that some of them were able to articulate feelings I had my entire life. I identified with this group right away. After five different diagnoses (and not all of them were probably wrong), I finally found one that felt right.
There is not necessarily one way that a person has to be diagnosed in order to have Asperger’s Syndrome. It is most often diagnosed in children although the diagnosis did not become official until 1994. It is more difficult to diagnose females on the spectrum than males and it is not entirely uncommon for females to be diagnosed with Asperger’s at a later age. Ultimately, it all started to add up. Through forums, blogs, and lots of google searches, I learned different ways that I can manage problems I have that occur as a result of Asperger’s. I learned that anxiety and obsessive tendencies are associated with the condition. I learned that lots of people with Asperger’s have stomach issues. I learned that not everyone always has that feeling in the pit of his or her stomach, not everyone has to wear multiple layers of compression clothing, and not everyone goes through periods of intense obsession or fixation. It is hard to really put in to words what it is like to have Asperger’s because I have never known what it is like to live any other way. I did not know what I felt was different from other people because I did not know how other people felt. A helpful analogy here might be that being able to compare Aspie to NT (neurotypical) is like asking a person in Siberia what it is like to live in the United States. The Siberian can tell you what they think it is like, what they want it to be like, and what they dream it is like. But they don’t know. They don’t live here. We can’t tell you what it’s like to live in Siberia no matter how much television we watch or how many books we read. We don’t live there. Unless you have lived in both places, you don’t know both sides.
Mostly, I learned that who I am is ok. If you have met one person with autism, then you have met one person with autism. I am not like Pierce, Hayden, Kane, Kadan, Will, Joey, or Carter, or Temple Grandin, or Thomas Jefferson, or anyone else. I am me. I am an expert on me. I eventually decided that people could know all of me or they could choose to walk away. If you think I have been misdiagnosed, that’s ok. If you think this is an excuse for slacking, that’s ok. If you disagree, that’s ok. If this makes you understand me a little better, that’s great. It helps me understand myself a lot better. One of my favorite quotes I have read from a book about living with Asperger’s is from Jennifer O’Toole:
You are exactly who and how you were meant to be. You may make mistakes, but you are not a mistake. And the world is better already just because you’ve arrived.
I hope my story will encourage people to not be ashamed of different challenges they face. It took 23 years, lots of visits to the doctors (often against my will), and lots of failures before I started to figure it out. And then, as soon as I figured it out, the word was gone. The DSM-5 was released a month ago and no longer is Asperger’s considered a diagnosis. Now, it is all “autism”. Avery said it made him sad because other kids would miss out on all the good things that come with having Asperger’s. I agree, Avery, but taking away a word doesn’t mean taking away an identity. People can call it whatever they want.
A rose by any other name would smell as sweet. ~ William Shakespeare
Sometimes, autism is like a wall. It limits me. I run into it full speed and crumple to the ground. Other times, autism is like a ramp. It helps me to go faster, go farther, and go places that I could not go if I had to stay on the ground. Originally, I was extremely hesitant to tell people about my diagnosis. I didn’t want people to disagree. I didn’t want people to say I needed to see another doctor. I didn’t want people to be disappointed or think I was stupid. Professionally, I didn’t want people to see the word autism and not want to hire me. Now, I dare you. Avery taught me something very important. I am Erin McKinney, I have Asperger’s, and I am not ashamed.