Reflections on diagnosis

I’ve continued to think about why my diagnosis of Asperger’s was a matter of “confrontation” or “something I could no longer deny.”  My current words still betray the negative connotation that I felt at the time.

A devout Fundamentalist would deny and repress their homosexuality and resort to intense soul searching, begging God to remove this integral part of their personality, as long as they remained a member of a church that considered homosexuality to be a sin and a matter of choice. This is how I felt about being on the spectrum. “Normal” was something to which I aspired, something that I thought, if I only tried hard enough, would bring me ultimate happiness. Such a devout Fundamentalist would be described as being deeply in the closet. It is no accident that the words I used when I first spoke of my Asperger’s in public included my “coming out.”

To continue with my analogy, like my hypothetical devout Fundamentalist, in order to find peace with myself, I’ve had to change metaphorical churches, to realign myself to a vision that accepts my differences. My self image now reflects the realization that I could never be the woman (that it feels to me) that the majority of the world wanted me to be. In the past, I’d often said, pugnaciously, that I was different and the heck with anyone who couldn’t deal with it – but I wasn’t being honest with myself as I said it. I was the one with the biggest problem about who I was!  

For me, self-diagnosis was a confrontation – when I was forced, against my will, to confront the totality of my differences and see them for all that they added up to. And it was devastating. But after the war, I could (metaphorically) pick myself up, start to rebuild my self-image (now including self-acceptance of AS), and continue with my life.  But I wasn’t the only one with a faulty image of me.

A few days after the tests, I told my supervisor, a man who should know better, about my results. He immediately minimized their interpretation and denied the possibility that I might be on the spectrum. He had an image of me that did not include the possibility that I could have hidden such deficits from him in all of our interviews, discussions, and other encounters, at the school where we worked.

On one hand, this interaction made me feel better about my acting skills, but it upset me that he seemed to want to push me back into the closet. We never had a chance to discuss this again because shortly afterwards, I got critically ill and never went back to school. Still – after all of my research about AS, one thing about this has troubled me. “Theory of mind” is, in part, the realization that others may not share your knowledge. People on the spectrum are supposed to lack "theory of mind." This man had a tremendous skill, one of which he was very proud to have developed. He could recognize. and call by name, every person that came into his school. He intimated that every teacher could (and should) develop this skill, with sufficient effort, and that such effort separated good teachers from bad. In all of our interactions, he never seemed to notice that, although I hugged and chatted with kids and teachers all of the time (in hallways and in classrooms), I usually did not call anyone by name unless I had a list (or photographs) at hand. He saw that I “recognized” people, so it must be equivalent to the way that he recognized everyone. In the morning, how could I be greeting everyone with a welcoming smile but recognizing only a few, but still hugging those who responded to me with their own smiles and listening carefully to the cacophony of voices for clues about identity? Who seems to have had a faulty “theory of mind,” here?

As I’ve talked to more and more people on and off of the spectrum, I’ve found myself seeing more and more adults who’ve never gotten a diagnosis and who are often at odds with their surroundings – and there are a LOT of them out there! I’ve been teaching at a small college, with classes of 8-15 students. Out of five classes, so far, I’ve had two students that see to be to obviously be on the spectrum but I was not allowed to tell them (there are strict rules about what I’m allowed to tell students at school outside of my curriculum and I am also not allowed to form outside relationships with them).

I’m NOT a psychologist but these people are so stereotypical (from my research about my own differences) that they should qualify for a diagnosis. People like me aren’t so clear-cut – we are better actors and are able to hide it from strangers and mere acquaintances, although not from those who know us best, who can see it as clearly as I see it in these students. Or is it just that you need to be one to see one, sometimes?

I wonder how these adults see themselves? Are they, also, struggling with a self-image that never quite lines up with what they are? I’ve got to think about the restrictions on my speech in this job, but would it be appropriate for me to say anything, if there were no restrictions? How would I have reacted if a teacher had made this suggestion to me? Just because I’m out of the metaphorical closet doesn’t mean I have the right to out anyone else, even just to themselves, if they are content with the state of denial.