There is a myriad of misinformation about autism circulating throughout worldwide veins. Sometimes the people autistic individuals are counting on most, are capable of damaging those they claim to help, thanks to inexperience, lack of appropriate information, and narrow-mindedness.
It is often through an encounter with prejudice that an autistic self advocate is born.
Kate Goldfield lives in Ballston Spa, New York.
Elesia: Please tell us how you became a self-advocate.
Kate: It was just another day. I was in my junior year of college, six months or so after I had learned that I have Asperger's. I hadn't said much about it to anyone because I found no reason to, and I didn't know if it was the kind of thing people would be receptive to hearing. After all, I was still trying to figure out Asperger's for myself.
Everything changed after an incident at my college library.
One day, I was especially groggy and out of it, as well as overwhelmed. I felt as if I couldn't wake up or focus. The smallest things overstimulated me, such as people's voices or people walking around. I needed a break from my work, so I went into the basement bathroom of my college library. Hardly anyone ever uses it, so it assures the most privacy. I entered a stall and locked it behind me, letting my mind run loose with all of its thoughts and feelings. Some of the things on my mind, I said aloud, as self-dialogue is a big stress reliever for me. If a person entered the bathroom, I immediately stopped talking.
Thoughts came and went so fast that it was overwhelming. Thoughts were pushing at my brain to get out. My thoughts could not be quieted until I said them aloud, or until I reasoned through the problems I was struggling with out loud to myself. Often, I went down to this basement bathroom when I needed to work something out in my head. After spending a few minutes in the bathroom, and working through my thoughts, I always returned to my task.
Though it is weird to talk to yourself, doing so is just one of the many coping mechanisms that an adult with Asperger's may use to better navigate and cope with the world.
On the day of the incident at my college, I heard someone enter the bathroom, so I stopped talking. Ten minutes or so later, I heard the door open, and a woman asked me if I was okay. Used to hearing that question, I said, "Yeah, I'm fine. Just a bit overwhelmed. I'll be fine."
Expecting to be left alone, I was instead asked, "Are you sure?"
The next voice I heard was that of a college security officer asking me to exit the bathroom. I did so, gasping as I realized that the college security was involved.
"Why were you in there so long?" asked the lady standing near the security officer.
"I was just trying to calm myself down. You know...just taking a break." I hesitated before adding, "I have Asperger's Syndrome, and one of the symptoms is severe sensory issues and overload. If I take a few minutes for a time out, I feel better."
The lady who had started this whole incident, turned to the security officer and said, "I'm a psychiatric student at John's Hopkins about to get my degree. She can't have Asperger's because she can talk. Asperger's is like autism, and she couldn't talk if she had autism."
I tried to convince this lady that she was mistaken, and that Asperger's is very different from what she may have learned. I mentioned that people with Asperger's certainly could talk, and often did so quite well. In response, she threw around a bunch of loaded psychiatric terms about emotional instability that obviously impressed and scared the college security officers. In turn, they would no longer listen to me.
"We need to take you to the office and figure out what to do with you," said one of the officers.
"What? I'm supposed to meet someone in five minutes. I have work to do," I said.
"No. You need to come with us."
I was taken to a cavernous gloomy office in the basement of the library that I have never been to. I was questioned for about an hour, about both Asperger's, and my behavior. I was shaking and so overwhelmed that I could barely talk, but I managed to defend myself, even though nothing I said made a difference. Over my head, there was talk of calling the paramedics to escort me to a hospital. Then a member of the Baltimore City Police was called in for reasons I still do not quite understand. I was not yelling at or threatening anyone back in the bathroom. I had simply been talking to myself.
The officers called people I knew to try and make a confirmation, but no one was available. I tried to convince them that I was fine, but again, they would not listen. I was desperate to keep the officers from taking control over me, God forbid send me to a hospital when I was just taking a bathroom break from my sociology homework. An hour later, one of the officers said, "She really does seem fine now. She seems much better." Inside, I rolled my eyes, and asked to be dismissed. Finally, I was given their consent.
Shaken, I left and made my way back to my dorm room to process everything that had happened to me. I met my friend that I was supposed to meet earlier, and told her everything that had happened. She was appalled.
Eventually, I received several heartfelt apologies from both the Residence Life, as well as the Security offices on campus. I never received a letter from the ignorant lady from John's Hopkins who had started the incident, and I often think about writing her a letter.
This situation gave me a desire to communicate the experience of Asperger's to the world. I want to lay it down unequivocally: I am what an adult with Asperger's looks like. Please be aware that we may have different needs than others. Please do not be alarmed if we present behavior that is unfamiliar to you.
Motivated, I wrote an editorial about what Asperger's is, and sent it to the Baltimore Sun. I was stunned a few days later when I received a phone call informing me that my article would be published. The article ran on Thanksgiving Day, and I got more than two dozen email replies with people telling me that they saw their son, daughter, friend, or loved one in the words I wrote. I was stunned by the response, and very happy. I felt validated, and it was wonderful to know that I made a difference.
From there, I was hooked on self-advocacy. I have been invited to speak at two autism conferences in the Northeast. Essays of mine have been published in autism-focused magazines.
I have found my voice; a voice that allows me to educate the world on what being an adult with Asperger's is like. A voice that gives me a sense of meaningfulness and purpose.
I shudder to think of the fate of the people that lady from John's Hopkins has treated. I still wish I could have a talk with this lady. But who knows, maybe she has read one of my articles. If it weren't for her, I'd never be doing what I love, and so maybe it was a good incident after all.
Elesia: Thank you for sharing your story.
If you've met one autistic person, you've met one autistic person.