Saturday, April 10, 2010

How I Became an Autistic Self-Advocate

I submitted this essay to Newsweek several weeks, or maybe months, ago, but alas, nothing came of it. No surprise here. But perhaps I will find some appreciative readers here. :)


My awakening to self-advocacy began about six months after I received my diagnosis of Asperger's Syndrome.

Asperger's Syndrome is an autism spectrum disorder. People who have it have trouble understanding and receiving social cues. They may appear "off" in their interactions with others. They have trouble making friends. They are often very intelligent, but have no "social sense." Sensory issues often also accompany the disorder; sensitivity to noise, too much going on in the environment, smells, light and such is common.

I hadn't thought much about it for those months; it was kind of at the back of my mind. I didn't see much reason to tell people about my diagnosis; it was just another part of me. Well, that all changed one day at my college library.

I was feeling really groggy that day. I felt overwhelmed and overstimulated by the smallest of things; people's voices, people walking around. I needed a break.

I went into the basement bathroom of the library; the most private one that hardly anyone used. I went into a stall, locked it and just let my mind run loose with all the thoughts and feelings running through it. Some of them, I said aloud. There was no one else in the bathroom, and there usually wasn't. If someone came in, I would stop talking immediately; but this kind of self-dialogue was a big stress reliever for me. Usually, this did not bother anyone; and why would it? It wasn't hurting anyone.

But this particular morning was different. I heard someone come in the bathroom, and stopped talking out loud. Several minutes went by, and the woman came back. She asked me if I was okay. Used to the question, I said "Yeah, I'm fine, just a little bit overwhelmed, I'll be fine," and expected it to end at that, as it usually did. Instead, I got a "Are you sure?" and then the next voice I heard was that of my college security officer asking me to come out. I did so and gasped as I realized college security had filled the bathroom.

They asked me why I had been in there so long. I gasped and tried to respond. "I....I was just trying to calm myself down. I have Asperger's Syndrome, and one of the symptoms is sensory overload. Being alone for a few minutes and talking things out often helps me a lot."

The woman who had started this 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 her she was mistaken and that Asperger's was very different from what she might have learned about autism. That people with Asperger's certainly could talk, and did so quite well . She threw around a lot of loaded psychiatric terms about emotional instability that scared the college cops. They wouldn't listen to me.

They took me to a cavernous, gloomy office in the basement of the library I had never been to, and questioned me for an hour about my behavior and what Asperger's was. I was shaking and so overwhelmed I could barely talk, but I managed to defend myself. Nothing I said made any difference to them.

Finally, after an hour of this, they let finally let me go. I was shaken. I was thankful to later get apologies from both the Residence Life and Security offices on campus for what had happened. They didn't know any better; most people don't know what an adult with Asperger's looks like. The incident motivated me to want to fix this.

I wanted to lay it down unequivocally: this is what an adult with Asperger's looks like. We have different needs than you. We get overwhelmed easily. We need time alone. We process things differently. We communicate differently. However, we also have many strengths and positive traits to go along with our difficulties.

Thus motivated, I wrote an editorial about what Asperger's was, and sent it to the Baltimore Sun. The article ran on Thanksgiving Day, and I got more than two dozen email replies to it. People told me they saw themselves, their son, daughter or friend in what I wrote. People thanking me for describing them so well.

I was stunned and very happy by the response I got. I felt validated and wonderful that I was able to make a difference. After this, I was hooked on self-advocacy. I was invited to speak at two autism conferences in the Northeast as a result of the article. I had essays published in national autism magazines. I had found my voice; a voice that allowed me to educate the world on what being an adult with Asperger's was like. A voice that gave me a sense of meaningfulness and purpose.

I shudder when I 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 woman. But, if it weren't for her, I'd never be doing what I love, and so maybe everything does happen for a reason.


  1. Things do happen for a reason. I'm glad you found your voice!

  2. That is really great, good for you, it does feel good to help other people.

  3. I feel for you. That woman shouldn't be near any sort of degree with her close mindedness.
    Thanks for sharing your story and working so hard to educate about Aspergers.

  4. I hope this article gets published. I also hope it can be a part of training for police and security guards, as from what I understand, Aspies frequently have run-ins with police and security who when questioning them loudly don't realize they are overwhelming an Aspie into even more difficulties socially. It reminds me of the scene in the movie Adam when he just wants to get away and is observing a playground where his friend works. Then, the police think he's a pervert and he gets frozen and can't respond in socially appropriate ways. This article should be read by all policemen and security officers.