Over the past number of years, my mother has been doing a fair amount of reading about Asperger’s and autism. Her older sister was always “special” — and in ways that nobody really ever talked about. We knew Aunt M. was different. She talked differently, she went on about things that mattered to her for long stretches of time. She stuttered intensely, but that never stopped her from talking. She was uncoordinated, she was highly emotional. And she couldn’t clean her house to save her life.
In fact, when my parents moved her out of her trailer into a rest home, a few years back, they cleaned out her home by themselves — and put about 3 tons of hoarded material, most of it old newspapers, magazines, and books — into a cartaway dumpster. Aunt M. had so much stuff piled up from years and years of collecting, that her carpets were nearly new — except for the narrow paths where she’d walked, and the postage-stamp-sized square where she’d sat to watch t.v.
My mom was charged with taking care of her, looking out for her, advocating for her, and keeping her healthy, for her entire life. Even being a couple years younger than M., my mom was responsible for her. Because she could be. It’s taken a toll, as well. My mom has all sorts of pent-up frustrations from her childhood of responsibility for her sister. And her adulthood has been somewhat limited by needing to watch out for her sister.
As we often do, when we’re growing older and looking back in retrospect on our lives, my mom has looked back… done some research… done some thinking… and reached the conclusion that Aunt M. is on the autistic spectrum. She knows far more than I, since I never had nearly enough contact with Aunt M. to know her personality inside and out. But then again, I have always known she was different in ways that were very much like how I was different.
That always made me a bit uncomfortable, actually. Like looking in the mirror and seeing the image of you that others see, not the reflection you’re used to seeing. It’s been like looking at myself in a smartphone selfie-display, and seeing up close all the things that never jump out at me when I’m regarding my face in the bathroom mirror when I wake up… and again when I get ready for bed.
One of the things that always made me uncomfortable, was that nobody really talked about it in terms that we could understand. Nobody talked about Aunt M’s differences at all. She just was who she was. And to be honest, there were enough other people like her in the close-knit rural community I grew up in, that her differences were clearly just on a spectrum that was region-wide… community-wide. There were a lot of different people in the world where I grew up, and now it’s pretty clear to me that many people I encountered in my youth were on the autistic spectrum. But because everyone was so religious and so many people were involved in church communities and the emphasis was on being good Christians rather than being good neurotypicals, our similarities were emphasized, not our differences.
And anyway, autism was something that was completely debilitating, only happened on the most “low-functioning” end of the spectrum, and was something you only talked about in hushed terms.
The whole concept of Asperger’s / high-functioning autism was foreign — impossible, really, in the ways that people conceptualized ASD.
But now things are different. And my mother is talking about her sister’s autism. Her Asperger’s. And I wonder if maybe this might be an opening for her to talk about mine. And my nephews’. I’ve got one nephew — the eldest son of my sister — who’s pretty much a poster-boy for Asperger’s. I’ve got another nephew — the eldest son of my brother — who’s very similar to his cousin, although he’s had a history of hydrocephalitis as a baby, so that brain trauma may be more of a factor than autism. But still — it’s entirely possible, since my sister-in-law is uncannily similar to my mother (who herself may be on the spectrum, tho’ in very different ways than the rest of us).
I’ve read that autism’s genetic traces travel through the mother’s side of the family. And if so, then that might explain why my maternal grandmother was so stern, so cold, so seemingly aloof. I never much cared for her. She always seemed so harsh. And her sister, my great-aunt E., was so rigid and strict that she stopped communicating with me when I told her that if she didn’t include my wife in her letters to me — at least acknowledge her existence — she didn’t have to contact me anymore.
That was the last I heard from her. And when I think about what she and my grandmother may have been going through, dealing with sensitivities and spectrumy types of difficulties, all the while forced to keep a “feminine” demeanor… it must have been brutal for them. That would explain a lot.
Seeing my family through the lens of the autism spectrum puts things in a whole new light. I know it’s given my mother a good deal of relief, knowing there was a real reason her sister was so challenged.
But that doesn’t make her past any easier. That’s all done.
And it doesn’t guarantee that she’s going to look farther than that. I’m not sure she has the bandwidth for that.
For me, though, it makes all the difference in the world. And I, for one, am going to continue to look farther. Because I can.