Wednesday, June 27, 2012

Life Through a Different Lens: Jean's Diagnosis Story

Photo courtesy Jean Winegardner
[image: Selfie of Jean, a white woman with long medium-brown
hair, smiling. Background: a body of water and a city skyline.]
Jean Winegardner
@stimey

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 Autistic Women and Nonbinary 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 autism 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 autism 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 autism 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.