In the decade that has passed, I have been forced to revisit Autism Spectrum Disorder as the classification that may best suit my suite of neuro-atypicalities. There are two reasons why:
- SPD did not make it into the latest version of the DSM. The compilers of the manual decided to lump SPD as a classification under ASD.
- I researched the latest findings regarding Autism in women. This topic is so interesting I will devote the rest of this post to it!
When my symptoms officially became a subset of Autism, I felt totally misunderstood by the powers that be. How could SPD (which defined my characteristics perfectly, bringing clarity and self-understanding for the 1st time in my life) suddenly become a subset of a classification that, I felt, totally failed to describe me?
I began voraciously reading about Autism when I was in my early 40’s and I heard an interview with a very high functioning middle-aged autistic man (famous in his field) coming to terms with his recent diagnosis. He was describing characteristics about ME that I had never heard put into words. I was fascinated. Autism suddenly became a special interest.
Special interest: an obsession that (among several other traits) helped mark a man or boy or (occasionally) a girl as a high functioning autistic (or “Aspergers” – as it was called before it, too, got eradicated in the DSM-5).
As I dug deeper into this topic I realized I knew several boys and men with this particular characteristic and I (coincidentally) had always been drawn to them.
One of them was my Uncle Joe, William’s older brother. Throughout my childhood, I shared a basement wonderland with him whenever my nuclear family of origin visited my grandparents in NY. The huge basement was split down the middle. On one side was my Uncle Joe’s short wave radio workshop. It was a visually non-understandable rainforest of electronic gear and tools and other stuff related to the building, studying and repair of short-wave radios. The other side was a perfectly organized art studio for children. It had been created by my grandmother as a coping mechanism for entertaining her one-dozen grandsons and me. There were rules for playing down there but they were rules that came naturally to me so I only ever heard them in passing, (use your inside voice, no running, no throwing, no hitting and put away whatever you get out.) The grandsons only visited once or twice a week so I got my half of the basement all to myself for the bulk of the time during my family’s by-annual visits.
Uncle Joe was a quiet man and very nice. He always said “Hi, Lane,” looked up and smiled whenever I went down there. Then he put his extremely weird glasses with lights on them back over his eyes and went right back to whatever impenetrable thing he was doing. I knew it was not something I could understand, or even wanted to, because the first time I got curious (or polite) enough to ask him “what ya doin?” he launched into an explanation that was as dense and as huge as his entire side of the basement. After that I limited my remarks to “Hi, Uncle Joe,” or “I’m going back upstairs now, bye.” And we were both good with that.
I met several boys that seemed to resemble my Uncle Joe over the years. We often got to know each other because we were both hanging out on the sidewalk, during recess, a safe distance from the kids on the playground. (Remember, until high school, I moved across the country and changed schools an average of once a year thanks to William’s service in the USAF.) No matter where in the US, in each school I attended there was always a sidewalk of misfit children and I rarely stood on it alone. Usually there was at least one boy standing there with me. Until I started researching autism in women, I thought I was there because “I was new” or because kids on the playground were noisy and chaotic and I risked physical harm if I got too close to them.
Eventually one or a small contingency of girls would absorb me into their group and if they weren’t too loud or physical or expected me to do anything with a ball I would “play with them” at recess. There were always at least a couple of girls who loved to read, or loved animals and I could grow to trust them. But I never forgot those boys, they were usually very smart and if they were anything close to nice I would find them interesting, and would sometimes enjoy listening to them talk about their specialty – unless it was too weird (think Civil war battle strategies) – but dinosaurs, I could hang with that.
But special interests can be different for women. Our special interests are often related to interacting normally or helping us fit in.
(Many of my special interests change over time. I think of these as “mini” special interests.)
I have one special interest that never goes away: BEHAVIOR, why do people (and animals) do what they do? It has always been a topic of profound interest for me. Sometimes I feel like that little kid that just keeps asking “why?” I think most kids get a few answers and finally feel ok. But my fascination for “Why?” never went away. It was why I majored in biology in college. You might ask why not psychology? I got very little satisfaction from psychology. Not real enough, too theoretical, not enough hard science for me. I want to draw synaptic events in my notebook using 5 different colored markers.
Maybe others didn’t care about the fine points of behavior because they had some kind of instinct that made them comfortable just being part of a group of their peers. But I didn’t, most of what my peers did made no sense to me. I needed to know why so I could figure out what was expected of me. I needed to get things right if I was going to ever be accepted or understand enough to decide if this was even a group I wanted to be in.
Empathy: Another reason I couldn’t be autistic was because: “autistic people have no capacity for empathy.” I read that from multiple “expert sources.” That is outdated information. However, empathy can be a problem for me (and lots of other autistics). Some of us feel emotions very keenly. I have to escape a room with big emotions happening. And nothing confuses me as much as someone who is having feelings yet denies it. Their body is telling me they are in distress but their words are telling me they’re fine. Or they look tired but tell me they are not. Or they seem angry but they deny it. Trying to operate in that confusion is stressful and exhausting. That’s why I can comfortably spend much more time with animals or small children than I can with grown people. Animals and babies don’t lie.
Communication: Ability to carry on a “normal” conversation: According to many autism experts, It’s not difficult to spot someone with Autism, they can’t hold down a normal conversation. Unless they are telling you about their special interest, if spoken to they get a deer in the headlights look, clam up and eventually wonder away. I met several boys while spending time on the sidewalk that operated that way. BUT it turns out some high functioning male autistics and even more hf female autistics develop a superpower called “masking.”
Masking: the ability to fake your way through a human interaction and appear normal, or sometimes even dazzling. There is a price to pay though, masking is fucking exhausting! For people who have only known me a short time, or in a business setting, where I’m helping them out with something I’m good at, it is inconceivable that I could be autistic. What they don’t know is I have to be rested and prepared to put on a normal front and I can only do it for a limited time lest I develop consequences.
Meltdown: is an irrational emotional outburst that sometimes seems to come out of the blue. Mine generally come from overwhelm: sensory, emotional, or a combo of both. I’ll be masking along, looking to all the world like a normal human, feeling like i’m doing an excellent job, when. . . that one extra straw gets tossed onto the pile and BAM! Tears start flooding out of my eyes and if I’m lucky, I get to run to a dark room and hide until I can compose myself (or – way better – go home and send a well worded text message with a vague neurotypical explanation like ‘I’ve been under a lot of stress lately’).
Plenty of people describe what it’s like to be an autistic woman. Here are a few of them. And I included a couple of scholarly reference links, for the “experts” that refused me with condescending amusement when I told them I want to be tested for autism.