G-d I hate my autism today…
Listen, I screwed up big-time in my Christmas Eve post, “Designing My Home Around Adult Autism: 7 Principles.”
I completely left out why I thought the post was worth reading in the first place…
And, that’s why I’m posting this update with its own announcement… so folks who read it then… will see the update… now.
“Designing My Home” was 3,200+ words long… 10 times longer than my comfort zone for keeping my writing coherent. So you know, I fucked up.
Here are the missing points:
- Containerization is very central to what works for me. I didn’t make that clear.
Because I don’t handle many details at once well… but I am gifted at focusing on one detail at a time…
I need to see, or more accurately, perceive as few objects as possible at a time. (Honestly, that’s true of all my senses… as well as thoughts & emotions….). AND as I did explain, I need to be able to clearly see things to remember I have them.
Grouping tools, ingredients, or related things into jars, baskets, shallow boxes, open bowls…. allows me to focus on a few categories of things at a time, but have easy access to all the “deatils” I need if I focus on the contents.
Short version: Two or three orderly baskets of things distract me vastly less than a corner stuffed with an overwhelming number of baking ingredients.
So I put screws in small, clear, lidded glass jars. Food in large jars. Board games in big baskets on visible shelves. Night time stuff… like glasses, jewelry, phone, pocket contents, eye drops… in a small basket beside my bed. I have one box for my usual pair of slippers, walking & stage shoes by my bed. I have one boot tray in my entry way for one pair each of garden & walking boots.
But honestly… the REALLY important detail I left out was this…
- I wanted to show you my lifelong, hard-earned LITERAL survival strategy.
Hospitalized 3 times for suicidality… before I learned no hope there…
Family members, loved ones, or hired professionals have dug me out of rooms or apartments that I’d filled with stuff & trash… I believe… 6 times. Over the course of nearly 4 adult decades. Because I was either physically or mentally unfit to do so myself. Sometimes both.
My breezy writing style, while kinda good at talking about tough realities with a sense of normalcy, hope, and maybe pride… and portraying how my autistic mind works…
Gave some folks the impression I was “celebrating” some cute, comfortable lifestyle choice or peculiar hobby of a quaint old neatness freak with too much time on his hands.
NO. It is true these ideas helped keep me alive.
It is also true that there is an exactly zer0 percent chance anyone who has ever lived with me… or known me for a significant amount of time… would call me a “neatness freak.” Except in mockery. LMFAO
But. I’m still alive.
- Okay this is really “inside baseball”…. the kind of thing only insiders care about.
Say, for folks who bump into the “Culture Wars” in the autistic community. A term I’ve usually seen used by professionals or consultants who specialize in counseling non-autistic parents of autistic children… to dismiss activists, advocates, authors and such who embrace the rather fuzzily defined concept of “neurodiversity”… as so many do… including me to whatever small extent I contribute.
Sometimes cruelly labeling folks who talk about neurodiversity as “bored Millennials indulging themselves with the latest identity fad that explains their personal failures.” (A near quote of something on LinkedIn.)
But, TRIGGER WARNING. I’m about to go off. And certainly offend…. some body…
Enough of this shit.
Lately, I have received a few… but pointed, but painful… personal attacks or snidely, clever shade. The main thrust? By writing about my “high-functioning,” privileged life I am harming parents of autists and differently abled autists — who are the “real” autists…
Or, on the other hand, I’m threatening the cause of neurodiversity itself.
This is my life. I will write about it as I please. If it doesn’t please you… Do. Not. Read. It.
I do not claim to have any truth but my own. I urge no course of action on anyone. I make no claims to any credential other than my own personal authenticity. I do NOT claim to represent anyone other than myself… certainly not speak for all nonspeaking, colors, “high-functioning,” “low-functioning,” gendered, sexually oriented, sub-types of autism… or any cause whatsoever.
And I do not compare my personal challenges, tragedies, strengths or triumphs to any other living being’s on the planet. There is no prize for “most disabled.” A person with one leg is not required to be silent because there are people with no leg.
Pain is pain. No degree of pain that damages life is good in my eyes.
Good God. I hate the human tendency to see every statement about oneself… positive or negative… as an implied criticism of or competition with you personally…
Or the inability to conceive that other humans may have legitimate needs that they have a right to pursue… and yet have no intention to harm you even if they conflict with your needs for professional identity… or income.
We could use our energies to pursue to meet both our needs collaboratively….
I simply hope, like so many experiential writers… even amateur ones… that in writing about my specifics there is something of the universal to be learned for somebody.
I do not accept that telling my truth… whether I am right, wrong, or indifferent in anybody else’s eyes… distracts from or damages any other individual on the planet with any other form or degree of disability.
At least not to any greater extent than any other writer on any other topic… whether abled or disabled.
I don’t want to compete. I want to support. I want to collaborate….
As I am able.
Don’t like me. Don’t hang. And I report and publicize whatever I consider to be hate speech directed at me personally, any group of disabled folk, or anyone else. Regardless of what you see as your good intention.
- Some of my friends are writers or other artists, some are autistic… and some talk with me about how the autistic creative process may be different for us than others. So for those who have that interest….
I talk sometimes about my difficulties with language & writing. Probably worth a post in its own right… a number of us autists seem to have them.
To the point: It’s hard for me to write an “article” much longer than 300 words. Very hard. And not lose a sense of coherence. Or get lost in detail and forget stuff.
Difficulties prioritizing… summarizing… generalizing… topic sentences… paragraphs… concept of time… getting lost in detail… difficulties projecting the emotional impact of language on many differing groups of humans… etc etc etc.
Any way… short blog posts, tweets, written-word memes, would-be epigrams, the occasional poem… I can do that.
Much longer? I’m lost.