Pittsburgh filmmaker Jonathan R. Skocik talks about Mornnovin as an allegory for coming of age on the autism spectrum.
Today it is seven days to Book Launch, and it is also World Autism
Awareness Acceptance Day. This seems like a good moment to call your attention to this blog’s header.
That’s right! We’ve got an autistic person on our hands here! And I can assure you that it has most definitely shaped the writing I do. How could it not? Autism is not a thing I have, it’s a part of who I am.
I was twenty-five years old when I received my autism diagnosis. At that time, my life had been decomposing at a snowballing rate for the last several years and I’d been trying to get to the bottom of why I couldn’t handle very basic everyday things that everyone else seemed just fine at. In retrospect and placing it within the larger context of my childhood moving forward, the diagnosis of autism seems super obvious. At the time, it was a revelation that helped me slowly begin to get my life under control.
By then, I’d already been writing about the characters and cultures of Asrellion for a decade and a half, so they were already fully-fledged even so long ago. And without knowing it or even doing it on purpose, I had written what my friends would later observe (as if it were glaringly obvious) was an autistic protagonist. Not just that, but an entire autistic culture.
I remember an occasion early in my first marriage when my husband-at-the-time was raging at me about whatever had flown up his nose that day. The angrier he got about the subject, the more vital it had seemed to me to remain calm and rational. Someone was going to have to do something about this thing that was enraging him, and I didn’t see how it could be either one of us if I started foaming at the mouth the way he was.
But the calmer I remained, the more intense his rage grew. He asserted that I obviously didn’t care about [whatever damn thing it was] since I wasn’t getting worked up. I explained my thinking to him. In a towering fury, he spat that I was “a damn Vulcan!”
He had meant it as an insult (which, what?) but refusing to take it as one, I simply replied calmly, “I think you mean elf.”
Needless to say, he wasn’t amused, but this isn’t about that jackhole. The point is that even then, and without quite meaning to, I had developed a culture and worldview that functioned in a way that made sense to me as an autistic woman. I’d invented a society of, essentially, Vulcan elves. And how my elves and their culture fit into what is for all intents and purposes a larger neurotypical world is a major ongoing plot element in the stories I write.
I don’t want to do too much telling before any of you have had a chance to read the novel, but I do think it is obvious, relevant, and interesting how my atypical neurology plays out in the world of Asrellion through my characters.
On this World Autism Acceptance Day 2019, as we count down to the launch of Mornnovin, I invite you to ready yourselves for a fantasy world and protagonist that are unashamedly neurodivergent. To restate the old saying, this novel is about us and by us.
As a postscript, April being Autism
Awareness Acceptance Month, if you are feeling any inclination to get involved with autism charities, outreach, education, or activism, as an autistic person I implore you to steer well clear of Autism Speaks. They are among the worst (if not outright seizing the title of Absolute Garbage Nightmare Worst) offenders in the predatory, disreputable charities department.
Instead consider giving your attention to one of the wonderful groups being run by autistic people for the benefit of our own community, such as The Autistic Self-Advocacy Network or the Autistic Women and Nonbinary Network.
I didn’t know I needed to read this today until I read it today.
If you aren’t familiar with “spoons” in the context of disability, take a few moments to read Christine Miserandino’s landmark piece on Spoon Theory before reading this post.
Spoons, by nature, are a limited resource. They’re replenishable, but not on demand. Sometimes we get a new supply each day and sometimes we have to ration out spoons over many days before our supply is restocked. And there’s no spoon store, so forget going out to buy some if you unexpectedly run out.
Conserving spoons is an essential skill. The most obvious way to conserve is simply to ration. More things to do today than you have spoons for? Eliminate some stuff!
That works fine when your day has lots of padding. It’s relatively easy to cut out things like “go out for lunch with officemates” or “participate in 500-comment Facebook conversation.” You probably won’t miss them much. But what…
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Because I don’t have the level of fight in me right now necessary to compose an entirely new post on a subject I’ve already addressed, and because why waste words when I’ve already spent them, I’m going to simply link to last year’s post on this date regarding April as Autism Awareness Month.
I will add, for those with genuine interest in making a charitable donation, a couple of links to organizations run by autistics for autistics. The Autistic Self-Advocacy Network, which advocates not for a cure but for services, education, better diagnostics, and acceptance; and the Autism Women’s Network, which is super important because until recently (and still in some outdated pockets of academia,) it was believed that autism was only even possible in concurrence the XY chromosome, and it is only slowly becoming understood that female autistics have needs and challenges different from those faced by their male-presenting peers. There are other organizations as well, many of them locally-run programs specifically aimed at providing employment services and executive function education. Never again say that while Autism Speaks may not be ideal, they’re the only game out there and it’s better to give your money to them than to do nothing. Giving money to them is definitely worse than doing nothing, and there are other options.
“They need to know that while it is absolutely true that there are Autistics and their families in desperate need of immediate support, and that there is indeed an urgent need for both short- and long-term plans of action for them, they are not to be feared.
“They need to know that autism is only a death sentence if we continue to allow people like you to spew rhetoric like this from on high – rhetoric that demonizes and dehumanizes our loved ones, telling them that they are a tragedy, a burden — a thing to be feared rather than people to be included, supported and loved.”
A rousing call from one mother to Autism Speaks. No more.
My girl cracking herself up with scripts last night
I was once asked, “If you have so much trouble with the fact that Autism Speaks uses the words “disease” and “cure” in its marketing materials, what would you have them say instead?”
I thought about it for a moment, and said, “Well, I suppose I’d like them to implore the public to help us find ways to mitigate the disabling aspects of autism while recognizing and celebrating its more positive attributes.”
My questioner cocked his head. “Okay, so how does that read on a sign?”
I’ve never felt more awkward (this is a lie, but go with it) than when I answered, “Celebrate diversity! Mitigate Disability!”
I recognized the folly of my attempt at copy writing long before he said, “Wow, you suck at this.”
He was right. I do.
Because for me, trying to reduce autism awareness / education / advocacy…
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We’ve been saying for a while that October was going to be an interesting month around here. I don’t really know if that was the right way to put it, or if it was saying enough. Tim is away, has been for nearly a week now, at his big yearly SCA thing in California. The spawn left on Monday to join his grandparents in traveling to a family wedding in New York, gone until next Tuesday. It was going to be more interesting, because I was supposed to be leaving on Saturday for eight days to tour the Midwest with my choir. The two of them fending for themselves for a week was going to be… interesting. And me in the constant company of thirty near-strangers for eight days, away from my safe zone and my routines and my decompression time – there’s another word for what that would have been.
As it is now, the tour will only stretch over the weekend and I’ll be back home just before the boys instead of nearly a week after both of them, but this is still a big deal and it has meant certain arrangements had to be ironed out regarding the pet situation (nothing so straightforward as asking someone to come by the house a few times and make sure they have food and water. Not with our dogs, not under the circumstances.) It also meant we had to spend money we could ill afford to spare renting a car for the week while Tim is gone, since the Mirage is sadly beyond repair and we haven’t yet come to a permanent solution to that. But practical considerations aside, this is a bigger deal because, well. I’m autistic. Pretending that the whole idea of this trip isn’t freaking me the hell out for all of the reasons would be disingenuous.
To be clear, I’m excited about it in more ways than just the excitement of terror. I do actually want to go. There was a moment, in the beginning, when I could have said no, but I chose to opt in. Back then (oh, August, how long ago you seem now!) I was enthusiastically blinkered to all of the ways in which this is actually beyond my coping skills, and was only seeing the tremendous experience-broadening and artistically fulfilling possibilities of the thing. Now I’m just about ready to start hyperventilating. And this is without even getting into the fact that I’ve never before headed into a concert feeling this unfamiliar with the material.
But in the midst of all of this psychic turmoil, there remains the germ of eagerness to get out there and prove I can do this. All of this:
Getting myself together and out the door on an out-of-town trip without anyone else standing behind me to make sure I’ve got everything I need (even though I’m always the one performing this function for others and know perfectly well that my powers of organization are up to the task), and to push me if I balk; taking care of all of the administrative preparations necessary to leave the house unattended for a few days; bearing up under the strain and the demands of traveling with such a large group, with a rigid itinerary not at all dictated by me; being among people and their sensory output for so long without melting down; successfully performing this difficult and extensive set of music that I haven’t learned to anything like my satisfaction; belonging to and with this group of musicians in a way that makes me an asset rather than a liability to the whole.
And because this is simply the way my mind works, now that I’ve got too much to do to actually have the leisure to sit down and unravel my thoughts into words, I find myself turning back toward the piece I started outlining about my reaction to The Impressionists. It’s because I’m preparing to immerse myself for the next few days, rather selfishly, in activities that are entirely centered around my art and my self-expression as an artist, and I don’t do that, like, ever. Certain mental associations have been called forth.
Tomorrow, if I finish all of my preparations with enough spare time, there may just be an entry not about my thoughts on the film, which I am still sifting, but about my need to justify the right to call myself an artist before I can allow myself to talk about the film as though it says anything about me.