So I have tried a few support group sites to talk things out with some fellow Aspie’s and have found a divide in the community. Those of us who have a diagnosis, and those who do not. A large number of those who have been diagnosed seem to be quite angry at those referring to ourselves as having Asperger’s without a diagnosis. I find this sad, as you don’t necessarily need a diagnosis to know you have Asperger’s, and there are reasons to and not to get a formal diagnosis.
Some of us were lucky, and were found when we were children, and were treated early with therapy and given the tools to work though life. Other’s lived in rural areas or were a little too old, and were given a stricter definition of autism, before the spectrum was well known. I know my parents were given an autism checklist, and checked all but two items on the list, having trouble in school, and I am not sure what the other was. These two items were considered to be definitive of the diagnosis, and without them checked, you weren’t autistic. Now we know that when you check 18/20 of these things without the definitive aspects, that’s Asperger’s. I was born in 1986, and in 1990 in a small town, no one had really heard about Asperger’s yet, so I was labelled not autistic and life moved on.
I only ever had one of two friends, and hated change. My mother set a routine up in stone, I ate the same thing in my lunch everyday for over 10 years, and I learned how to “fit in” on my own. I was teased and bullied, but I pulled though.
The first time I heard of Asperger’s I was 16 years old, and what I heard definitely wasn’t what I had. The son of my mothers friend was diagnosed in childhood as having Asperger’s. He was violent, non-compliant on his meds, and intermittently institutionalized. He refused to eat anything but pizza, wouldn’t go to school or work and spent all his time gaming. With my mom’s friend having never ending trouble with him, in my house Asperger’s became known as, lets call him Chris. Chris who hit his mother, Chris who got angry when his mother didn’t obey his every whim, Chris whose mom moved a few years ago and though goes to visit him often, hasn’t given him phone number or home address out of fear. Basically my parents feel that is Chris had been given less leeway due to his diagnosis, and more rules, wouldn’t be who he is today.
As you can imagine it never occurred to me to think of myself as someone with this condition. Even though I read and collect compulsively, have problems making friends, recognizing face, judging facial expressions, keeping track of multiple conversations, problems with taking on the phone, knowing when people are bored, sensory issues with my clothes, food textures, poor coordination, poor fine motor control, intense issues with change, and anxiety, and a bunch more little things, it never occurred to me.
Then more and more characters started showing up on tv, with quirks and eccentricities that I had, and were being occasionally accused of having Asperger’s. Last year I actually looked it up. It fit, okay. Then I read an article on women with Asperger’s, and for a second the world stopped. That was me. So I took a quiz, and another and another, and ya, I am not neurotypical by a long shot. So I looked into diagnosis, and realized that it wasn’t easy as an adult, it would probably involve my parents who didn’t believe in it, and be expensive, drawn out and hard. It could affect my ability to find work, who wants to hire an engineer they “know” will be bad with people. So I decided to put it off, start with a little CBT for my anxiety, and maybe look into diagnosis a little down the road.
CBT didn’t really go well. I am not comfortable sharing intimate details of my life. I wasn’t even comfortable saying why I was there. I couldn’t express how my anxiety felt, or that I believed I had Asperger’s. 10 sessions later I felt that the therapist was patronizing me because she didn’t think the anxiety was so bad. I can’t explain how I feel, I don’t know the words, I rambled and put on my “everything is okay” face because I was uncomfortable. She took this to mean I was wasting her time, I didn’t really have anxiety.It was humiliating in a way, and while I want to get some help, I won’t see her again.
I have great respect for those who managed to get an adult diagnosis, but not all of us can get there. For a variety of reasons, and while I know an entire world of help could open up to me with one, I just am not there yet. I couldn’t even get someone to realize I had anxiety, and this is going to be so much harder.