A better week ahead

girl walking down forest path
This coming week has more potential than the last one. I’ll be driving down to my parents’ place on Monday — all by myself in the car for 8 hours. Sweet. I don’t mind long-distance driving. Plus, I’ve got a couple of Temple Grandin audiobooks on my smartphone, so I can listen on my way there and back. I’ve got most of her books, but I haven’t read them all. I just finished “Emergence – Labelled Autistic” last night, after a few fits-and-starts attempts.  I can see how it was hugely ground-breaking when it first came out. That’s pretty amazing.

I’m also amazed at how people have apparently picked and chosen what she says, with some of here statements sounding like accepted “canon” in the autism world (e.g., you have to threaten a child with “consequences” to get them to behave), while other parts have seeming gone missing — especially the parts about cutting down on sensory overwhelm.

Well, people pick out what makes sense to them, and they don’t often actually change their philosophies based on actual evidence. So, the punishment / consequences thing persists. ABA persists. Patting kids who can’t process sensory inputs at airports for minutes at a time… that persists. Because apparently we need to be taught a lesson.

Ok, whatever.

My trip to my parents’ place is all about my autistic aunt “MG” who passed away last week. Her death pretty much derailed me for a few days, and it’s still bothering me. I try to look on the bright side. She had a really good life, thanks to my Mom’s continual intervention throughout the course of her life. And being a couple years older than my Mom, I can only imagine how things were for Aunt MG (and her parents), until my Mom was old enough to watch out for her and help her.

My Mom is pretty much of a “bruiser”. She was a fighter, when she was in grade school, in the one-room schoolhouse where she and Aunt MG attended. She got into scrapes on the playground, she was always coming to the defense of people who were picked on or less fortunate — including her sister MG. Mom got in trouble a lot for fighting. It wasn’t a ladylike thing to do. But she did it, anyway. Reading about how Temple Grandin got into all those fights, reminds me very much of my Mom. I’m sure there was a fair amount of autistic logic behind the scraps she got into. Mom’s pretty clearly on the autism spectrum, too (with her communication issues, hypsensitivity, intensely visual-spatial thought process, and social awkwardness), though she’s in a very different “corner” of the spectrum than Aunt MG. Or me, for that matter.

But that never stopped her from coming to MG’s assistance. She helped her through all sorts of things — when MG’s husband died in a traffic accident, and they sat together in a dark room all afternoon as MG worked through everything… when MG got in trouble at work and was nearly fired, Mom came to the rescue and talked her employer into keeping her on, just in a different role… when MG rolled over her Jeeps — not once, but twice — Mom talked here into getting a smaller, more stable car… when MG got into deep into debt, Mom and Dad paid her credit cards for her… when MG’s hoarding got so bad, she couldn’t even move around her own house, Mom helped her clean out a bunch of stuff… when MG couldn’t live by herself anymore, Mom got her a place at a retirement community just down the road, and made sure she was taken care of, then Mom and Dad cleared out her house, emptying 2 tonnes of hoarding leftovers into a dumpster.

Mom took MG to her doctor’s appointments, the dentist, eye doctor, church, social gatherings. She took care of her insurance, her money, her holiday plans. Without my Mom, MG would have probably ended up either homeless or living in an institution.

But because my Mom was there, every step of the way, MG got to have a full and long life. She was nearly 80 years old, when she passed, and she’d done all sorts of things in her life — traveling, working, keeping beloved pets, pursuing her hobbies — in no small part because my Mom normalized her life. Even though MG was nothing like what’s called “normal” in today’s world, she had a regular life, full of activity and adventures, and never once treated like she was “off” or “wrong” by our family.

In fact, we never thought of her as autistic at all. Even though she clearly was (and so were / are we), she was just Aunt MG. That’s just how she was.

She couldn’t hold a two-way conversation. If you interrupted her monologues, she’d get confused, then sit quietly till you finished what you were saying, before she completed her narrative.

She rarely made eye contact. But that was normal for my family. She stuttered intensely, working so hard to get her words out in burst of loud, monotone speech, about things that delighted her and filled her with childlike glee.

She couldn’t hug… just like I couldn’t. I learned how to brace myself for contact, but she always stiffened up, and she held her arms out, grabbing onto your forearms to hold you at arm’s length.

She was probably epileptic. My Mom didn’t even realize this, till she started taking more care of her and found the anti-seizure meds.

She was so clumsy, so prone to just tipping over and falling. She was good-natured about it, and she took it in stride, but her employer didn’t when she kept tripping and dropping meds all over the place. That almost got her fired. If not for my Mom.

She lived alone, except for a dog she usually had. She was fixated on Boston Terriers. She thought they were the best dogs, ever. And she told us that every time we saw her. She loved each dog she had like it was the first or last she’d ever had. And when she couldn’t have a dog, anymore, she started to go downhill.

She was often at my parents’ place, sitting her her customary seat at the dining room table, as my Mom worked in the open kitchen nearby. During our chaotic, over-packed, noisy family dinners, she sat in a kind of stunned daze, not saying much, until she found something she wanted to announce. And then we all stopped talking and listened as she struggled to get the words out — so eager to share with us something she loved, or an insight she’d had, and so thwarted by that stutter.

She was loved. She was cared for. She had a family. My Mom did that for her. We did that for her. No one ever made fun of her in my family. Even when we got impatient with her, as we sometimes did, nobody pushed her to “spit it out” or “get it together”. No one ever thought to, than I can recall. It could be difficult to be around her, sometimes, but dealing with that was on us, not her. There was no need to judge her. She was just Aunt MG. Different. Challenged. But every bit as deserving of respect and love as the next person. And with us she had a place where she always belonged.

I know it hasn’t been easy for my Mom. When she was little, she couldn’t be a kid. She had to take care of her sister. She had to cover for her. She had to pretend that everything was fine. Nobody knew about autism, when they were little, and my Mom now says that it might have been easier for her if she’d had more information, to better understand it. That sounds about as autistic as it comes — Mom didn’t need an excuse or a reason to judge. She just needed to understand, so she could logically accept what was… instead of constantly struggling against “what might have been”.

So, yeah — Autism diagnosis for women does matter. It is important.

It’s important for autistic women to have the understanding of underlying causes for our issues — so we can manage them.

It’s important for our families to have a conceptual framework to better understand us — so they can accept us.

It’s important for healthcare professionals to have at least a working knowledge of how autism affects our experience and perceptions — so they can support us properly and not induce iatrogenic harm.

It’s just important for everyone involved (which is… everyone), that autistic women are properly identified / diagnosed. Until that happens, everything is a mystery, and a whole lot of harm can be done.

It happens every day.

And because not every autistic woman has someone like my Mom to look out for them, there’s a whole lot of hurt happening.

That needs to change. Soon.

Anyway, I’m looking forward to this week — having my own routine, and moving at my own pace, relatively speaking. Having time by myself, as I drive through the countryside with fine spring weather. Being away from the office. And paying tribute to my Aunt MG, as well as my parents, who made sure she had the kind of life she deserved, not the kind of life the rest of the world wanted to give her.

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