I’ve never felt I belonged anywhere. As I said in What am I Trying to Prove?, I’m not a native of anywhere. There have been places and situations where it may have seemed like I did fit in, but there has always been at least one person to point out to me, whether by intention or not, that I really didn’t belong. As a cheerleader. As a choir member. As a student. As an employee. As a friend. As a family member.
It’s not always in a bad way. I’ve been the only employee in a department to hold things together while the boss is gone. Even that, though, means you don’t fit in with the others in the department.
Sometimes the one pointing out my non-membership in the club is me. I am, after all, my harshest critic.
When I was able to convince people who didn’t believe me at first that I was autistic, and plunged headfirst into exploring that, I thought I’d found the club for me. I thought I’d found my tribe, found where I belonged.
Self-diagnosis is common for adult autistics, but I wasn’t comfortable with it. I needed confirmation from someone who really knew. So, over a year ago, I visited the therapist who gave me a kind-of/sort-of diagnosis. I begged her for a letter or report or something tangible that would show I was autistic. I needed my club card.
She gave me a letter, but it’s never really felt like enough for me. It says “most likely” and “high probability of the presence of” Aspergers disorder. Those non-definitive words haunt me. I don’t feel like I can really say I’m autistic with that hanging over my head. It’s like I’m not autistic enough to be really autistic. I’m probably autistic, just not enough to qualify for club membership, so I’m being offered a guest pass.
I went on with the blog exploration of my autism as if I was sure. I thought that would make me feel part of the community, acting as if, and it did for a while.
Last summer I learned more about executive functioning issues and began to believe that some of my difficulties, with writing in particular, were rooted in executive functioning deficits. As an adult, I wasn’t sure who to go to for help, so I went to a neuropsych to be tested and get some direction.
I felt really good about our testing session. I even felt good when she talked to me in person about results. She talked about how my working memory is awesome and that’s the best predictor for academic success and being a good writer. She talked about how my cognitive abilities are high and my processing speed is actually average, where I’ve always thought it was slow. She said it’s the discrepancy that makes it feel slow to me. Seems I can do the work in my head much faster than I can do anything with it and that makes me feel clumsy about it.
She also said my cognitive abilities make me feel uncomfortable when I make a mistake and my working memory means that I never had to learn shortcuts or how to break tasks down and look at the details rather than the big picture. Basically I try to carry all ten grocery bags into the house at once because it doesn’t occur to me to do it one at a time.
She talked almost the whole hour and I didn’t have time to ask any questions. That was okay because I needed time to formulate questions anyway. She gave me a written summary and told me the actual report was to come a month later.
In reference to autism, the summary said: “…you rated yourself well above the” cut off’ scores for an autism diagnosis. You did not endorse the “core” features of autism or display them during testing. The reasons for this are likely to be complex and multifaceted.”
That hit me pretty hard. Not just the words, but the way they prompted me to doubt my own assessment of my abilities. Like with perspective taking. I’ve realized that I’m actually pretty good at it in some situations. Is that something I’ve worked out intellectually to compensate for natural ability or is it that I actually can do it and just didn’t realize it. It gets all fuzzy in my brain when I try to think about it too much.
It felt like my autism card had been revoked. Of course, I didn’t realize that’s why I was upset at first, I just knew I was upset. I stopped seeing my regular therapist for awhile, too. When I finally saw her again in December, she pointed out that I was upset because I no longer felt I fit in with the autism community. And I realized that I felt that I’d failed the autism test. That the neuropsych was saying I was really good at autistic-like behaviors, but not good enough to be considered autistic. I just didn’t fit in. So I was back to where I started with the original therapist, only worse off because she wasn’t giving me a “probably.” She was saying no.
I stopped blogging (as you may, or may not, have noticed). I spent the month of October writing a response to the neuropsych’s summary with lots of questions. And footnotes. Because, yes, I’m just that nerdy. I’m not posting it here today, but would consider it if anyone’s interested or thinks it might be of help to someone.
I sent it to her and she emailed back the next day, thanking me for the response and telling me she’d incorporate my questions into the report and have it finished up the following week. That was the end of October and I haven’t heard from her since. I emailed her at Thanksgiving and again last week, but no response. I’m not really sure what to do about that at this point. I guess I’ll call her this week, much as I despise the phone. I’ve been in limbo all this time, though, and I need it to stop.
I wrote a lot in the beginning of November, think I found a work-around so that I can actually finish a project, but I stopped writing after two weeks and didn’t write anything beyond email and facebook statuses until January. Not writing is not good for my psyche. But I didn’t feel I could come back to the blog and call myself autistic if it might not be true. It feels disingenuous.
So, there it is. That’s why I stopped posting here.
I think we should form our very own club, of being misfits. If no where else but in our own minds 🙂
I’ve been thinking a lot recently about labels. More in terms of sexuality, since I know a teen who is trying to figure him/herself out – bi or gay? transgender or not? etc. Which doesn’t apply to you obviously, but the need to be able to label who you are does seem to. It’s a very human impulse to sort things into categories, to label and identify and classify. But I’m finding more and more, that labeling is limiting. Almost all of our abilities, desires, expressions of self exist on a continuum not in a binary. And by labeling we limit ourselves to that one spot on the continuum instead of a more fluid range. It’s comforting to be able to say “this is who I am” “this is why I am the way I am” but it’s not really that accurate. I really wish we did less labeling and more accepting. Less categorizing and allow for more diverse expression of self.
I don’t know if that is any help at all; it very well may be the opposite from helpful. Knowing your own quirks of behavior and your own needs for how you learn and function is really helpful for getting along in the world, but trying to shoehorn yourself into a label which may not fit isn’t.
From over here where I’m sitting, you are very self-aware and quite talented at expressing yourself. You’re a caring mother, you’re fun and funny. You can come sit at my lunch table any day.