I’ve known I’m on the autistic spectrum since early 1998, when the AQ test first showed up. I first took the “paper” test — the PDF version without any sort of online form capabilities. If memory serves, I printed it out, filled it in, and tallied everything up… and came out around 32 or 34. A German version showed up online at http://www.autismusundcomputer.de/aqtest.html, and since I speak German, I believe I took that one, too.
I’ve take a number of Aspie-type tests a number of times, and the results have always placed me on the autism spectrum. The numbers have always been “in the range”, and I’ve also found a lot that I relate to. I prefer to do things with others rather than on my own, and I prefer to do things the same way over and over again. I’m a very visual person, and I process information most by visualizing things. I get caught up in my interests (which seem to fascinate me to no end, while others just shrug them off), and I lose sight of the rest of the world. I also notice details, sounds, patterns, that others don’t seem to pick up on. I’m terrible at small-talk. I can do it, but it’s not my first choice, by any stretch of the imagination. I can also get going for extended periods of time, talking about things that others don’t seem to care about — but I don’t realize they don’t care, or that I’m boring them — until they tell me. I absolutely despise breaking rules or “improvising” — doing things spontaneously. Every now and then is fine, but some people (like my partner of 25 years) seem to do it by default. And it’s been an ongoing source of friction between me and others (including my partner, who sometimes calls me a “Nazi”).
Looking through just about any Aspie quiz, I match most of the criteria. And in many cases, I match them secretly… but I don’t seem to, in the eyes of other people, because they have no idea how hard I work and how much I practice, to fit in and blend seamlessly with them. I stay under the radar. I don’t want people to know how hard I have to work to present the way I do. I just want to live my life without too much scrutiny. Being “under the microscope” makes me extremely nervous and uncomfortable. I often can’t explain myself, the words don’t come out right, the pictures in my mind don’t translate, and I sometimes go mute when I’m feeling under too much pressure
Interestingly, my AS exploration has often been prompted by others. In February 1998, my co-workers urged me (repeatedly) to take the Aspie Quiz, telling me it would be helpful to me. I didn’t believe them, till I took it. And they were right. It did help me feel less “freakish” and more like a part of a pattern larger than myself. Unfortunately, I couldn’t really find much support in the late 1990s, so after a few years, I drifted away from exploring it. It was just how I was. That was just me.
Ten years later, almost to the day, I was going through a very rough patch in my life. There was a lot of stress, and I was doing a terrible time helping my partner who had some serious medical issues. I wasn’t making much eye contact with others, I had a spike in sensitivities, and I was melting down on a regular basis — sometimes using minor self-administered pain to “snap myself out of it”. Together with my partner and a therapist friend of ours, I attended a conference on trauma recovery. There, I met a clinician who asked me pointedly a number of times if I’d ever heard of Temple Grandin. He kept pressing me on it, and when I asked him what he meant, he said I should read her book(s) because I’d probably relate to what she said. He told me it’s possible to be a high-functioning autistic person, which had never occurred to me. Within a few months after that, some coworkers of mine were having fun with diagnosing Aspies (we were all in high-tech web development), and they kept looking at me and winking, and asking me if I “knew anyone” who had Aspergers — wink-wink. I wasn’t sure what they were talking about, but I finally figured out they might have been trying to prompt me to admit I was on the spectrum. I didn’t. They were being stupid and oblique, and I wasn’t playing that game. Within the past year, around the time when I had a marked resurgence in interest in Asperger’s, a coworker of mine struck up several conversations with me about Asperger’s, asking me if I’d seen a television show featuring an Aspie character… and what I thought about it. This happens independent of any initiation on my part. I’m just minding my own business, and people seek me out, asking me about Asperger’s.
I’ve reviewed many, many of the criteria across a number of assessments and descriptions, and I fit them so well. It’s a little eerie, realizing that A) I’m not the only one, and B) that a misfit like me actually “fits” so well into a pattern of behavior and experience that I always thought was unique and “disordered”, so therefore needs to be hidden away from plain sight. But now that more is being revealed about women on the spectrum, I fit even better — especially the pieces about blending, the empathic/psychic pieces (I have precognitive dreams, and I’m highly empathic – I participate in others’ feelings without even trying), a keen interest/practice in the arts and literature, feeling more comfortable in a “scripted” situation, and the interests in psychology and social sciences (I studied anthropology at university, because I freely admitted that people made no sense to me at all, and I needed to study them to figure them out). I’ve gotten past the idea that this is a disorder, and I’m just living my life as I am, without lugging around all the stigma that can go with it. It’s just a way of being. A terribly misunderstood way, but a way, nonetheless.
And I fit it extremely well.
What’s more, when I look at my family — Holy smokes, what a bunch of Aspies! We all had our appointed places at the dining room table, we all had our assigned roles and chores at home that needed be done at a certain time each week, and we lived by very strict (religious) rules and standards. My parents were never demostrative about anything other than disapproval and judgment, but in the past years they have learned how to be emotionally expressive and show affection to each other and us kids. I think it has a lot to do with my NT partner having such a strong and positive influence on them, as well as on me. We all learn so much from her, and she’s really transformed our collective relationships for the better.
Across the generations… my mother’s father was a botany professor, and instead of judging me for being “a little professor” myself, he revelled in it. He always encouraged me to be as scientific and nerdy as I liked, and he rewarded me for all my Aspie behaviors. My maternal grandmother, I believe, had a lot of sensory issues. She was a severe, meticulous individual who seemed utterly loveless at times, but I believe she was just managing her sensory issues. She was very rules-driven and black-and-white thinking, and quick to judge. Her sister, my great-aunt, was also very severe and black-and-white thinking, to the point where she punished herself for falling in love with the wrong man as a young woman, by never having another loving intimate relationship the rest of her life. My mother seems very much in the hyposensitive, sensory-seeking part of the spectrum, with no social skills and no apparent sense of others whatsoever, while her sister is markedly impaired (and epileptic), with signficant support needs. My biological brother doesn’t make eye contact, he’s a chemist, and he’s an extremely deliberate thinker who mulls over every single word he says or hears. My biological sister (I believe) has been clinically depressed for her entire life, and she’s been on unspecified meds for most of her adult life. She’s also got a lot of social difficulties, and she is an impossible perfectionist. My biological nephews and niece are all neurodiverse, with some of the boys looking and acting like they’re straight out of a Tony Attwood description. It’s eerie. But nobody seems to see it, because they’re so much like all the other kids they grew up around and are related to. My niece identifies as queer, and she — like me — is very much of a boy at times.
I’m not sure if my father’s side is Aspie at all, but it wouldn’t surprise me. They’re much more socially adept, actually, but they’re also very, very male — and they act like “high-functioning” male Aspies often act. So, it could be there’s some autism on that side, as well. My parents are actually related by marriage, and we all come from a somewhat small gene pool, so I would imagine there’s a buildup of Aspergers in the mix.
In any case, regardless of what my family is like, if I answer the questions to any autism or Aspie test honestly and remove all masking and conditioned blending from the mix, I show up there — smack dab in the autistic regions of the spectrum. Even when I try to be conservative, I can’t get my numbers into NT range. And if I “fudge” them, it’s so uncomfortable for me, I have to switch them back to how they really are.