Wednesday, June 27, 2012

Aspie Like Me: Jean's Diagnosis Story

Jean Winegardner
www.stimeyland.com

This post is an important one to me, folks. Naturally that means I'm going to do something most people do when they are discussing matters of deep personal introspection. I am going to quote an Adam Sandler movie.

In the movie Punch Drunk Love, Sandler's character is talking about how he doesn't know if he needs to see a psychiatrist.

"I don't know if there is anything wrong," he says, "because I don't know how other people are."

I saw that movie back in 2002 and I barely remember the plot, but I remember that line. It touched something in me that I'd felt for a long time. Something was different about me, but I didn't know if it was real or just me imagining that I felt different than everyone else. How could I know?

For the most part though, what did it matter? I was living my life, I was doing my thing.

Then I had Jack and he was different too. And I started to learn about autism. When I would read books about autism, I would see myself in them. I make notes in margins of books when there is something I want to remember and in these books about autism I would sometimes write "Jack" with an arrow pointing to a passage and I would sometimes write "me" instead.

I would read things written by adult autistic individuals and I would recognize myself.

I would think back to my childhood and my teen years and my young adulthood and I would remember the choices I had made very consciously to adopt ways of being to be like everyone else and I would also remember some of the completely clueless things I had done. I would read about autism in children and young people and recognize thoughts and actions from my own childhood.

I would read about autism in girls and women and nod as I learned how it is different for them.

I read so many times that parents of children with autism were diagnosed after their children. I wondered if I should be one of them. I wondered if it was the power of suggestion or if I really was different. I didn't know, because I didn't know how other people were.

Several years ago, I recognized my sensory processing disorder and very confidently self-diagnosed myself. In this case, I knew how not like everyone else I was. My auditory issues are the most intense, but I have very significant tactile issues and, to a lesser degree, some other sense issues. Learning that my aversions were based on my neurological makeup and not just a result of me being kind of uptight meant a lot to me.

That SPD self-diagnosis was a huge relief. I had spent years thinking something was wrong with me because I could hear -- and was intensely bothered by -- sounds that no one else noticed. I made a lot of people feel bad because I didn't want to be touched or, in certain cases, hugged before I could tell them that there was a real reason. I could go on (trust me, I could go on), but I think you get the point.

I have said, "I could well be on the spectrum myself," more times that I can count. I would toss off that phrase casually, and for a long time that's how it felt. I was fine. I was living my life. I needed to help my kid.

So I did. And I did. And I still do.

But after a while, "I could well be on the spectrum myself," became, "I think I'm on the spectrum," and that casual feeling became less casual and started to feel more like self-knowledge that could help me come to terms with my head space.

I have never been a person who would be comfortable self-diagnosing myself as someone on the spectrum. I respect those who do, but in addition to all the time I spent wondering if I were on the spectrum, I also spent a fair amount of time questioning if I could be. After all, I had adapted so well to the world. People who know me would probably never suggest that I'm on the spectrum. What if I were wrong? I needed something definitive.

Something definitive, however, required saying, "I think I'm on the spectrum," to someone other than myself. I turned to Sharon daVanport of the Autism Women's Network and sent a neurotically long email to her. I will probably save her response forever because it was so very kind and supportive. Her words confirmed what I felt and also gave me a tacit permission to pursue a diagnosis. I will be forever grateful for the time she spent writing back to me.

My next steps meant that I actually had to talk in person to three-dimensional people in my world. After years of casually talking about it, it took me a really long time to be able to get the words out to Alex. I sat on a couch on the opposite side of the living room from him and watched him read on his computer for a long time as I tried to get my mouth to say the words: "Do you think I could really be on the spectrum?"

I didn't tell anyone else. It wasn't something I could say to anyone. I don't know why. I just couldn't. Although to be honest, there are a lot of things that I just don't say to anyone. It's what I do.

I don't know that Alex understood my need for a diagnosis, but he was extremely gracious in accepting that I wanted to spend a fair amount of money to get one. From there, it was a matter of finding someone with the skills and availability to assess me.

I wanted to make sure that I got the right person because I really wanted an answer. I wanted to know if I was on the spectrum, but I also wanted to know if I wasn't. I needed to know if I wasn't, then what was I? Was I like everyone else? Or was there something else going on in my brain?

I was able to find someone after a few weeks and we spent several hours together over two sessions doing the testing. When we met to go over the results, I felt that I already knew most of what she had to say.

I ended up with an Asperger's diagnosis.

I also ended up with diagnoses of dysthymia and anxiety, which will probably surprise no one. Those actually knocked me for way more of a loop than the Asperger's could have. Especially in terms of some things in the report, which I recognize as completely true, but were a little difficult to hear.

For example, I like to look welcoming, but I really have my guard up at all times. Evidently the picture I drew of a house helped her come to this conclusion. I think it might have had something to do with the fact that I drew curtains and a cat in the window, but then I drew what looked like bars over it.

(They were supposed to be window panes, not indicators of my demeanor as a porcupine, which is something Alex has called me for a long time.)

I know that a lot of people I know will be surprised by my Asperger's diagnosis. Even when I tell people about something so common as my social anxiety, people are surprised and say they would never know. I understand this. I have adapted extremely well. I am very good at watching people. I have had nearly 39 years of practice.

I know how to act. And when I don't know how to act, I know how to not act so that people don't know that I don't know how to act. It's a fair amount of work and one of the reasons it is hard for me to be one-on-one with people I don't know well. It is much easier for me to hide in a small group.

I know how I present myself on the outside, but I also know that my inner world is very different. I recently came across this blog post about "hidden Aspies" and saw myself in it. I showed it to Alex and he saw me in it too. Sometimes the inside doesn't match the outside.

I am very grateful to have this new piece of information about myself. I don't consider my diagnosis to be an answer to all my life's problems, nor do I consider it to be a deficit. What I see it as is a new lens to see my behavior through.

I learned that SPD was responsible for me being able to hear that guy playing his stereo six houses down that no one else could hear, and that if I didn't want to have to leave my house completely, I would have to find a way to block it out. That knowledge helped me understand that it was because my brain was wired a certain way and not because I was a mean lady who didn't like anyone else to have fun.

I hope that my Asperger's diagnosis will do the same. I hope that it will let me continue to try to be the person I want to be while being able to adjust my expectations of what I can do. Understanding that my neurology is responsible for some of my difficulties might help me go easy on myself for having them. They are not character defects, they are a result of the way I am wired.

I am not a different person than I was just because I have a diagnosis. But maybe my perception of myself will be. It will be interesting to continue down this new path in my personal journey. As always, I hope you come along.

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This essay was previously published at www.stimeyland.com.