A little while ago, I interviewed my friend Ben about the road he took to an autism diagnosis. I related very much to Ben’s process. Perhaps you will, too.

Rachel: When did you first suspect that you were on the spectrum?
 
Ben: Well, I never suspected I was. I have a friend who had figured it out for herself about six months earlier and asked me if I had ever heard of Asperger’s Syndrome. It was almost like the time my mom asked me if I was gay. After we talked for a while, I went home and spent several days researching AS online, exhaustively. I got books out of the library (Pretending to be Normal and Tony Attwood’s guide, among others). I had spent my life knowing I was odd and different, and now I had a label to hang on it.
 
Rachel: How did you feel about discovering that you’re on the spectrum?
 
Ben: I swung back and forth between elation that I wasn’t the only person like this, that there was a name, that it was even a “syndrome,” to feeling that I now had to give up on some long-standing but pretty useless aspirations for myself. I was worried what this might mean for my relationship, too. After all, my partner already knew me and wasn’t going to be freaked out by a label, but I was worried he might be upset at what he’d have to give up as well—like the possibility that I would never be okay going camping, or out to clubs to go dancing (without my earplugs). The up side is that even though my partner isn’t an Aspie, he shares some significant AS-like traits, which helps in the areas of sympathy and understanding.

It’s been over a year, and I still have days that I’m sad when I realize there’s a particular something I’m never going to be good at.
 
Rachel: When did you self-diagnose and what assessment tools did you use?
 
Ben: Winter of 2008. I used the DSM-IV definitions, but found online personal experiences of people to be much more confirming. The DSM doesn’t cover weird AH HA! moments like:

Clothing tags!
Eating habits!
Sensory overload and extreme sensitivity!

Have I ever met a person with my amazing sense of smell? Not really. It’s fun but almost useless in daily life, and sometimes distracting or debilitating.
 
Rachel: Did you bring your self-diagnosis to a therapist?
 
Ben: I spoke with my therapist, whom I was seeing for cognitive behavioural therapy for depression (!) and anxiety(!). I don’t think he believed I could have AS because I made excellent eye contact (thank you!) and could be gregarious and talkative (nervousness channeled). He said we could find some specialists and get a formal diagnosis, but never pursued it. I stopped seeing him about four or five months after telling him about the AS.
 
Rachel: Why did you decide to seek out an “official” diagnosis?
 
Ben: I finally asked my family doctor for a referral, about ten months after my self-diagnosis. I wanted one for medical reasons, to be able to treat some of the anxiety and other complications that come up for many Aspies. I wanted to find out if I could access government programs or assistance for the disabled. I wanted a “piece of paper” that I could have ready when the world said I just needed to work harder at it and that I could be like everybody else.

What can I say? I was brought up in the same culture that values certification and credentials.
 
Rachel: How did you feel about the prospect of diagnosis?
 
Ben: Nervous.
 
Rachel: When did you have the assessment?
 
Ben: Last October, 2009.
 
Rachel: What did it consist of?
 
Ben: Sitting down with a psychiatrist and talking over the usual AS points.
 
Rachel: How long did it take, and when did you get the results?
 
Ben: About an hour, and he told me immediately. The results were forwarded to my family doctor.
 
Rachel: Has your “official” diagnosis been a positive step? Has it had any significant impact on your life, positive or negative?
 
Ben: Mostly positive. It kind of gets any “Am I or am I not?” questions out of the way. It makes sure my family doctor knows I’m not making it up, but it hasn’t had a huge impact on my life. I was quite certain I had AS before the diagnosis, but because the definition and the right to access services were controlled by others, I needed to be “officially” AS in order to consider telling anybody in authority (government agencies, employers, etc.) that I did indeed have Asperger’s Syndrome.
 
Rachel: What do you like most about being on the spectrum?
 
Ben: My slightly tangential approach to thinking and problem solving. My acute senses and “noticing” of things.
 
Rachel: Ben, thank you for sharing your experience.

© 2010 by Rachel Cohen-Rottenberg