An unpleasant encounter

I wear many hats. In a couple of them, I teach various subjects in several local institutions. Recently, I was finishing up my semester work, which means copying my tests and other in-class exercises for the permanent file of that semester. I also have several forms to include, plus a copy of my gradebook. I prefer to keep my gradebook on my laptop; that way, I know I’m not going to leave it on the roof of my car as I go zipping off to the next institution! 

I needed to print out my gradebook, so, thumbdrive in hand, I went to a computer room at this institution. Both students and faculty use the computers  in the room and there is a single networked printer. I entered; it was late afternoon and there was a single student in the room, doing some research. She was studying for an associate’s degree in medical assisting; I knew this from her scrubs. She didn’t look pleased as I entered and sat down at a computer down the row from her; she may even have glowered at me. I pulled up my file and made some last minute formatting changes to it, then attempted to print the file. I say attempted, because only a single page came out of the printer, not the two that I expected after my formatting changes. 

I went back to my computer and attempted to print the second page, alone. The printer made an unpleasant crunching sound and nothing emerged. I tend to talk to myself and this was no exception, saying, “Oh, no! It’s jammed!” I guess the woman thought that I was talking to her, as she responded. 

Her voice had an edge of attitude as she said, somewhat aggressively, “It was working just fine a minute ago.” 

I went to the printer; its trouble lights were blinking. I opened its compartments, attempting to see where the jam was located. A crumpled piece of paper stuck out slightly from the rollers inside the paper drawer, on the underside of the printer. I started to ease it out but, towards the end of the sheet, I heard a tearing sound.  When I got the piece of paper out, it was missing a small chunk in the middle of the sheet. I knew that the printer would continue to jam until the piece was removed but I didn’t have the time to do it. I also knew that the printer queue had my confidential gradebook in it! I shut off the printer to disrupt the queue and went back to the computer, to cancel the print job. I told the woman that there was still a small piece of paper inside the printer. She told me again, officiously, that the printer had been working just fine. 

I went to the office to report the problem. The office manager was not at her desk but I ran into my superior, whom I informed about the problem. I also gave her the sheet with the bite out of it, so she would know how much paper was left behind.

I went upstairs, to the prep room, to do my printing. The printer located there had several lights already blinking, before I did anything. I looked up the manual for the printer on the internet and used it to interpret the lights. It was completely out of toner and it refused to print. I trapsed back downstairs (I actually used the elevator). On the first floor, the office manager was back, so I told her about the toner. She said that she had tried out the first printer and it was now working, so back I went to the original room. The woman was still there; she immediately informed me in a pugnacious tone that I should not have left with the printer turned off and that it worked ,”just fine.” 

Back to my original computer station, I plugged in my trusty thunbdrive and pulled up the page, then, once again, attempted to print it. The printer made a loud crunching sound and, once again, all of the trouble lights started blinking. I scampered back to the office and quickly reported the problem. Back in the lab, I again opened the printer’s compartments. The crumpled paper was in the same place. I managed to extract this one fully intact, shut off the printer to purge its queue, and turned it back on. As I worked, the woman talked continuously, telling me that I should keep my hands off of it; that I should tell the front office that it was not working. I initially told her that I had reported it already but, as she continued to tell me what to do, I finally told her that I was a faculty member. She said that this didn’t matter, that I shouldn’t have left the printer shut off after the first failure and that it “worked fine” before me. That might have been true, but it was certainly jammed, now, and nothing that I was doing was going to jam it further!

After I removed the paper, I went back to my workstation to close my file and purge the print job. She continued to harangue me; I finally told her that I was an engineer and probably knew more about printers than the office manager – not polite but probably true. She got incensed at this comment. Her tone, which had not been polite from the start, was now extremely confrontational and rude. She said that if I was an engineer, I should have been able to fix the printer, and that if I was an engineer, why was I working there?

I again told her that I was a faculty member and asked her for her name. She refused to give it and grew angrier. I told her that part of her program was to learn how to behave in an office situation and that her behavior was very rude and inappropriate. She got even angrier and I started to have some concern that she might become physical, not for my own safety (I’ve had some training in martial arts) but on general principles – it was utterly absurd that a would-be medical professional would take such an offensive position with anyone! From the beginning, she seemed to want to put me in a subordinate position to her and what seemed to make her angriest was that I was not kowtowing to her. I finished closing the program, got permission from the computer to remove my thumbdrive, took it out, packed my belongings, and left the room.   

I went back to the office and found my superior and gave her a brief synopsis of the events. I didn’t tell her about my final concerns as nothing physical had happened. She went in to talk to the student. I went to another computer lab (across the hall) and was able to hear most of the student’s description of what happened as I was finally able to print out the gradebook. What surprised me most was that she only mildly toned down her attitude. Still, it was a very different interaction; my superior was also a middle-aged black woman and is well-known to all of the students so this woman had a somewhat milder tone with her than with me. According the student, everything wrong with the printer was my own fault for my not trying to get any help from the office. She either did not notice my repeated trips to the office or didn’t want to remember them.

As I left the building, my superior and the person in charge of the room (she, also, had been out of the room for my unpleasant encounter) were both wrestling with the printer, trying to find the scrap in the print path. I left them to it; the student was still there and I didn’t want to inflame anything.  My main concern was that I had forgotten to purge the print job, so I told my superior about it and she assured me that she would take care of it.

I can’t say for certain, but I suspect this unpleasant interaction was racially based. I think the student didn’t like me at first glance simply because I’m white. She started out very unfriendly and got worse as time went on. My interpretation is that her own insecurities about race made her want to put me in my place at the outset and I wasn’t cooperating or even responding in what she considered a predictable manner, so she got more and more angry.

The funny thing is, for me, it’s over, so I will be even less predictable at any future encounter. I won’t know her when I see her because of my face-blindness! I’ll be cheerful and polite to her (again) because I won’t be able to differentiate between her and any other middle-aged black woman; I may be able to recognize her from her voice but I might not. I’m sure she’ll be unnerved. But it isn’t my problem!

I’m afraid that, after graduation, this student is going to get a job in a doctor’s office where she will have to deal with white people as patients, co-workers, and/or superiors. If she really does have racial issues, she’s going to cop another attitude at an inappropriate time and get fired for it. Or maybe she was just having a rough day, today, and took it out on the stranger (me). But I’m not sure which is worse – if she a racist or just nasty to random strangers.  In either case, I don’t want her to ever have anything to do with my medical care. 

  

I’ve certainly had times when I felt that the way that I was being treated was based on my appearance (try going into an upscale women’s clothing store dressed in cheap jeans and a T-shirt!), even had times when I thought that my treatment was racially based (watch the difference in bargaining in a Mexican market with gringo customers versus local customers for the same objects), but this is the first time I’ve had someone, apparently, take offense at my existence solely on the basis of my skin color. It’s very disturbing, in this day and age.

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.

Diagnosis

Lately, people have been asking me about my informal diagnosis of ASD.  Unlike many adults, who experience their own diagnosis as empowering, I was devastated. Let me explain. As a teenager, all I ever wanted was to be invisible inside a crowd, and to some extent I succeeded. I recently attended a high school reunion from my school  – it wasn’t my year but mine was invited to one of the events.  I knew a couple of people but the majority of them were strangers to me – all of them.  And I was a stranger to them. Many knew me only in the context of my ex-husband’s memoir, “Look Me in the Eye.” I guess I was more successful at vanishing than I remembered.  Invisible, I was never a part of the group. I only had a few places where I felt comfortable in high school – in the AV Club and in my gym class, but the reasons why the typical place for trauma – gym class – was a place for comfort is another story – the nickel version is, it was a unique co-ed class that used “Outward Bound” as its model, so we did a lot of teamwork exercises instead of calisthenics. 

After high school, once I decided that invisibility was preventing me from any success, I started to be more outgoing, which was very difficult; my problems with recognizing others was certainly a handicap. I did my best to blend in – I tried to be social, chatting about inconsequential things as well as important issues. I thought that I had finally achieved “normalcy.” I made friends and tried very hard. Still, I was informally voted the geekiest teacher at a high school known for peculiarity.

The avalanche of awareness finally caught me – John asked me to participate in Simon Baron-Cohen’s longitudinal study of family members of people on the spectrum. Since Jack had been diagnosed at this point, I was needed as his mother. I logged in to the website and started answering questions honestly and to the best of my ability. I grew more and more uncomfortable as the instrument progressed. For the first time, the totality of what I had always considered “my quirks” was laid out. I couldn’t finish; I cried out, “I’m fucking autistic!” 

At first, I cried hysterically, then gradually acquiesed to the unacceptable. I blew my nose on some tissue (Puffs Plus, the only kind I like) and wiped my smeared glasses on my shirttail (all-cotton, of course).  I’ve done the same things every time emotion overcomes me, for whatever reason. Sometimes, the hysterical crying takes longer and is smearier. After a little while, I finished the survey. The results came quickly and were exactly what I now knew but feared; I was on the spectrum (but not officially diagnosed they warned – they don’t diagnose from this single albeit extensive survey but my scores were highly indicative of one who qualified for such a diagnosis), and did I have any family members who might also be willing to complete the survey? I called my brother, Ed, and asked him, me still sniffling, eyes leaking. He agreed, so I gave his contact information. An hour later, he called; he was one, too, and his scores were, if possible, even more indicative than mine! This gave me a little comfort; misery really does love company! We chatted for hours in the middle of the night - he lives on the west coast so it wasn’t so late for him.

In the aftermath, it took me months to be willing to start talking about it with others. I was immediately dismayed. My friend, Amy, said that she’s known for years but knew that any comment would only upset me, so she had kept silent. Matt said that he, too, had been diagnosed. Bill said his son had a formal diagnosis and he had an informal one. Apparently, most of my friends are on the spectrum, too - like has attracted like (or we just don't notice the traits that annoy neurotypicals). John told me of, the previous year, giving a book reading in Oregon. Ed came to the reading; a lady asked John if I was also on the spectrum. He referred the woman to Ed, as a brother would be more of an expert on me, who stood up and nodded. I was devastated all over again.  I thought that I had fooled everyone into thinking that I was “normal”. If my act hadn’t fooled anyone, was my life a failure? Rather like when my clothes got tight and yet I refused to consider that I might have gained weight, the only one I’d successfully fooled was myself. 

For me, knowledge was not empowering but it was undeniable. In the last few years, I’ve had to face some hard truths. I’m fat. I’m in a world that isn’t interested in hiring someone with my odd skill set. I’m female when most of the people who share my interests are male (and suspicious). I have chronic digestive problems. And I’m on the autism spectrum. The first, I might someday succeed in conquering, but the rest is just me. I’ve had to accept it – good and bad - or I would end up hating an integral part of myself. THAT is unacceptable. I don’t HAVE autism, I AM autism, just like I’m female. For me, trying to change those aspects would be mutilation. I even accept the visible scars on my body from my digestive battles. They are the outward symbols that I continue to survive. Eventually, the Truth will set you free.