Autism, community

Autism and Mental Health Treatment (Trigger Warning: The Most Serious Post I’ve Ever Written Here)

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And because it’s me, here are plenty of cute cats to break up the (sadly) quite serious nature of this post.

Advanced news: After composing this, I shall be an utter wreck for a bit, so send the cake and kittens now. And probably some vodka.

Also, necessary disclaimer: Because of the sensitive nature of some of the information here, there are some details I can’t (or won’t) provide. Some things you’ll just have to wonder about.

Okay, 3, 2, 1…here we go.

The week of Thanksgiving, I had to be without my oldest son; he was in the hospital, at the pushing of a social worker who did not understand that he was suffering from an emotional shutdown, and that, as an autistic teenager, this is in fact somewhat normal and does not mean he’s about to go jump off a bridge or throw a bunch of people off a bridge. Neither did she understand that this would pass (most likely within hours), and that he’d find a way to keep going (as he does), and that transferring him to a locked ward in the hospital — a situation that he would then not be allowed to leave, regardless of his or my own wishes — was not the way to handle it.

White Fang is 15, and a couple of traumatic instances have occurred in his young life (no offense, but bugger off, you’re not finding out what), but suffice it to say, it took a toll on his emotional processing recently, and he is rubbish at dealing with it on his own (despite his valiant efforts to do so). So he reached the point a lot of ASD adolescents do — he became despondent, morose, and overall struggling. What’s the best thing for families to do? With ASD teens, maintaining their routine and a secure, familiar environment is PARAMOUNT. Being in a locked hospital unit for 4 days hardly fits this description.

Now, as a parent, I was stuck in between wanting what was best for him, knowing what was best for him wasn’t necessarily what many medical professionals would recommend, and my heart aching for his aching. For the first and second day, he was very cooperative, and did everything that was asked of him, even when it went directly against his sensory input or an introverting need.

And I prayed that this experience would be a positive one, and that he would feel he got some help on the particular tough issues he’s facing. He wasn’t aware when the initial social worker told him that going to the behavioral sciences unit at the hospital would mean becoming nearly a prisoner; he actually agreed to go have an evaluation, hoping that he’d be out of there quite soon with a solid plan for how to proceed and start feeling better.

But by Thanksgiving Eve, he wanted me to get him discharged, as quickly as possible, by whatever means. It was a combination of the environment not being ASD friendly (constant bright lights, not being allowed to go outside, the uncomfortable bed), and having his personal belongings taken away and a number of protocols enacted around him that prevented him from doing such regular things as wearing shoes or asking to use the phone — and NONE of this being explained to him that it would go this way.

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Meanwhile, I was at home, not receiving frequent updates on his treatment, his regular activities, what the prognosis was, what tests they were running on him (for example, I knew he’d have a lot of blood drawn, and never did find out all of what they looked for) — just that they’d conducted an initial evaluation with him, and were double checking in with me to see if he had a history of being delusional (lovely to have that trust), and if it was okay if they started him on a medication.

Oh, and all of this was told to me 2nd or even 3rd person via a nurse or some other staff member on the unit. The doctors assigned to White Fang’s case didn’t actually speak to me. Didn’t call. Didn’t ask questions, update me on what they thought, planned treatments, possible outcomes. Didn’t try to meet me when I came for visiting hours. Until one of them was apparently forced to at a family meeting the morning after Thanksgiving Day.

By then, I’d already had some very unpleasant and upset conversations with some quite unhelpful people, and — praise God — some very helpful people at the hospital. And I had my legal rights issues ducks in a row, regardless of the particular safeguards for mental health exceptions — since White Fang had proven he wasn’t a danger to himself or others, and that the unit had never taken the crucial step of establishing that early on in his admission, which meant that they had to discharge him after he and I had asked for it and filled out the correct paperwork.

Long story short: We were successful. The day after Thanksgiving, I took him home with me.

Pause for cheers. And tears.

Side note: The first thing we did was go to Starbucks.

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Soon after, I was able to make him an appointment to get started with counseling (though I had to call around, and the first place never did get back to me). We’ve met with his primary doctor (who was, pardon the language, pissed off), and I know we’ll have the GP’s complete support on whatever treatment we want to pursue. There have been other issues as well in the last couple of weeks, such as the medication prescribed didn’t work at all for White Fang, so we’re back to the drawing board on that, and I’m really debating how to handle the first social worker who really read this so wrong and didn’t give White Fang the information he needed so that he wouldn’t suddenly find himself in a bad 1970s movie about behavioral health wards.

Now, before I go any further, I need to say this: As a former psychology major and a previously mandated reporter in daycare, I do understand that when it comes to mental illness, doctors and nurses involved have specific policies and procedures to follow, and sometimes they aren’t pleasant for the patients, and sometimes they are necessary to keep people safe. I’m not saying any of that is evil. It’s a tragic truth of living in a fallen world where some individuals do need to be locked up so they won’t hurt others. Here’s my problem with it: The psych ward is, most of the time, NOT the place for autists who are simply having a meltdown, shutdown, or a series of either.

And here’s my other major problem with it: Too many medical professionals do not realize this. They don’t know enough about autism specifically, or have preconceived notions about ASD. They look at the common symptoms of a meltdown/shutdown (raging anger, intense brief sadness, inability to comprehend others’ perspectives or advice in the heat of the moment, headbanging or some other form of hardcore stimming that may be mistaken for intentional self-harm, rather than a desperate need to blow off steam), and see a crazy person. We’re as sane as a stack of hats; we’re simply experiencing the lowest point of an overstimulation crisis.

On top of the grave misunderstandings still surrounding autism, in this particular, personal instance, the lack of communication I — and White Fang — received from the staff on the unit was disturbing. It made them look like they could’ve cared less about our feelings regarding the treatment — and in the 21st century, in a civilized society, there should be no excuse for that. Indeed, it shouldn’t even happen.

I’ve also met with some of the administration at the hospital, who (thankfully) took my concerns (and complaints — of which there were a lot) seriously, and I was informed that staff involved were spoken to, as the administrators agreed with me that what occurred wasn’t acceptable. They also concurred that my ideas about unit-wide education on how to work effectively with autistic patients were valid and were, in fact, going to happen soon at their facility.

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So, that’s the story.

Give me a moment, please.

… … …

So, what can families of autists who may be experiencing depression and anxiety — as a result of something, or just as part of being alive on the spectrum — do to help their loved one? As long as safety isn’t an immediate and true concern (like, if you find them standing on the roof of a 3-level building, do call 911), leave them alone during a meltdown or shutdown. Make sure they’re somewhere secure and familiar, where they’ll calm down more easily and faster. Block out the yelling and screaming and crying and swearing and throwing things. Don’t try to restrain them (unless they’re physically hurting someone else, or about to leap off that roof).

Take them to therapy. A counselor that understands autism — and ACCEPTS it as a condition that simply makes for a somewhat challenging and unique life experience. Go to therapy yourself. Form or join a support group for parents or guardians or caregivers in your situation.

Even if you really don’t want your child taking medication, if it’s prescribed, try it. During certain stages of hormonal surges in our lives — for example, puberty — our already-struggling emotions will feel overwhelmed, and some anti-anxiety or anti-depressant meds could really help.

Don’t punish them for going through this. Let them stim as much as possible. Don’t take away computer time or force them to socialize more, because it won’t get them out of their slump. Soooo many autists’ lives have become SO MUCH BETTER by the invention of social media, because we communicate SO MUCH BETTER in writing and not directly face-to-face. Our support groups are more often than not online, with people in different time zones or even countries.

And if you — God forbid — find yourself in a situation like White Fang and I, don’t take flack from underperforming hospital or facility staff. Go to administrators and Patient Relations departments. (Even on a holiday, you can find someone to help you. I used the hospital’s Facebook page to accomplish my task.)

Don’t be afraid to speak up if you feel you or your loved one received unfair or poor treatment. Hopefully it’s resolved quickly and to your satisfaction; if not, keep finding authorities and people — media, Congress, autism advocate organizations — to talk to.

And NEVER, NEVER, NEVER GIVE UP. You will all get through this. It will get better.

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Okay, I can’t anymore. Invisible moth signing off.

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Autism, books

The Ongoing Need for Proper Autism Representation in Fiction

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I started thinking about this topic (again) recently. Whenever I search for “autism representation in fiction,” a title that always comes up is The Curious Incident of the Dog in the Night-Time. Now, I hate this book. I read it about 6 or 7 years ago, after hearing that it featured an autistic/Asperger’s narrator. And it does. But I really, really wish it didn’t.

What’s so wrong with Curious Incident? Well, in short, it’s offensive as hell. The premise is that a neurodivergent boy (apparently a savant, who has intense skills in some academic subjects but little to no comprehension of human behavior and the world around him) discovers his neighbor’s evidently murdered dog (lovely) and he sets out to uncover whodunit. There are about a million things wrong with this premise.

  • It’s highly unlikely that someone with such impaired functioning would be capable of the level of deduction required to solve this sort of puzzle
  • Not very probable that he would care so much, since it wasn’t even his dog (and it is not that he doesn’t have emotions; he’d feel sad about the dog, but genuinely not see how this affected him in any way)
  • Considering the narrator is presented as having intense anxiety, the very notion of him going into crowded, noisy, busy downtown London by himself  — which does happen in the plot — to resolve the mystery is downright laughable

Along the way, the narrator continually talks down about and to neurotypical people, gets mistreated by the police, the neighbors, his family, pretty much the whole human race, and acts as if he’s somehow superior to the general public because he’s different. None of this is helpful towards teaching the NT population about autism — because it’s blatantly wrong.

This portrayal of neurodivergence makes autists look like androids, unable to process emotion or give a damn about other people, always focused on our own wants and the rest of the world can take a hike; that we’re hateful of everything we don’t understand; prone to condemnation and violence; just plain irritating to our families; and worthy of pity. That’s why I hate, hate, hate this book.

And it really rankles me when professionals in education, social services, and medicine see it as an excellent demonstration of how someone from “the other side” operates. They think this because they don’t truly know what we feel and how we take in information, how our daily environment affects us, or that we’re NOT robots playing at being human — we ARE humans who simply process this world differently than they do. And why don’t they know this? Simple: They don’t take the time to ask us.

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I’ve almost gotten into shouting matches with people who insist that autism is a “disease” or an “affliction,” and refuse to listen to another’s point of view — even of someone who has the condition.

But this is exactly why it’s so important that I march to my soapbox and raise my megaphone — because this is what too many people think autism to be. A disease, a problem that requires fixing. We need to get out there and yell from the rooftops the truth.

Now, while we’re on the subject, do I feel that the character of Christopher Boone himself in Curious Incident is completely unsympathetic? No, actually, I don’t. There were some things about this fictional autistic narrator that did ring true — his anxiety, his struggle to read faces, his greater attachment to animals than to people, his preference for math and puzzles — logical, tangible things rather than inconcrete emotions or shifting opinions that can’t be scientifically quantified. Most of these traits can be found in many spectrum folks. (Not me, because math and I do not get along.) But this is where the responsibility for writing such a novel correctly falls back on the author, Mark Haddon. Haddon has admitted he really doesn’t know much about autism, and this would be why Christopher’s symptoms read like a medical text.

And I’m not the only Actually Autistic who concurs this story displays negative, harmful stereotypes, and should not be referred to as a great example of ASD in fiction. (Scathing reviews can be found on Goodreads.)

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Since so many of us are lacking a good rep of ourselves in books and movies, what should be done about it?

Well, I stand by my crusade for a flood of Own Voices novels or nonfiction memoirs written by Actually Autistics to enter the market. I also think that most of these should be self-published or small press, to reduce the chances of a big name company jumping on the “it’s cool to be autism aware” bandwagon. (How do we think Curious Incident soared to the top of the bestseller list to begin with?) Maintaining the integrity of our mission needs to stay paramount in the eyes of editors and agents — not dollar signs. (See, we understand “normal” people just fine.)

I also think that too much editing would hinder the goal; trying to “water down” our autism and make our experiences and perceptions “more relatable” to the general public would defeat the point. They already don’t relate to us — the idea is to increase their knowledge, not cater to their misconceptions.

And we need more variety — a spectrum means a range of conditions based on a similar foundation. There’s a saying that “if you’ve met one autistic person, then you’ve met one autistic person.”

In my own fantasy series, I made both the characters with autism female (neurodivergent females are already very underused in fiction, and there are bunches of us in the real world). Madison Collins is in a lot of ways me as an adolescent; Avery McKinnon is, for many intents and purposes, me as an adult. They have some commonalities, but remain separate individuals, who have different ambitions and goals, and view their autism differently, too. Since I released my debut novel last year, I’ve received rave reviews for these characters — from those who have relatives or close friends on the spectrum, as well as from those who don’t.

We also need to increase the number of fictional families who don’t consider their ASD children “broken” or “damaged goods.” Since this mindset is (horrifingly) so prevalent in our society, this could take time to change. But if we don’t start, will we ever get there?

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We struggle our entire lives to be accepted as ourselves. Facing further obstacles due to autism now being a buzzword in the media only complicates things. Expanded autism awareness has not resulted in greater autism understanding or inclusion.

The notion of us being a curiosity of behavior needs to be dropped. We are the modern equivalent of the circus freak — stared at, snickered about, even feared. I don’t want us becoming a joke, or a cliche. I really want people to realize that we are not the punchline — that we’re just as valuable as everybody without autism.

Will it happen in my lifetime? Perhaps? But I’m also releasing 2 spectrum children into the world one day — and I sincerely hope they won’t have to struggle the same way I did.

So, it starts with us. It starts now.

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Autism

This Transition Can Bite Me

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The last couple of weeks of summer have been, for me, packed with impending changes. Despite being on the autism spectrum, I do not hate change as a rule; it depends on what the change is, whether I have notice of its intentions to enter my life, and if I feel it’s necessary. In these circumstances, I knew it was coming, and I expected it, and to a point, I’m ready for it.

I’m ready for the boys to go back to school (they may agree, or have other ideas). But I’m not ready, literally, in terms of acquiring all the supplies they may need throughout the coming 10 months, or emotionally, in that I feel unprepared to have a 10th grader in my family.

For months now, I’ve been asking White Fang if he was ready to turn over his layout to Muffin. “The layout” is a combination of Thomas the Tank Engine tracks and accessories and trains, arranged in a minature version of the Island of Sodor, on which has also dwelled (since about 2015) Lego Minecraft servers and important Lego City vehicles or buildings. (The Arctic Ice Breaker and Weather Station is especially impressive.)

Anyway, Muffin has, off and on, eyed the layout with something approaching coveting, as he is now old enough to play with almost all of it (apart from some of the Lego sets where the box states ages 8 plus). A few times, a power struggle has almost resulted. The old guard and the new; the teenager harboring fond memories, and the preschooler wanting to take advantage of all these toys he hasn’t played with yet, right in his midst.

Then, this past week, I made one more proposition to White Fang: I will dismantle and rebuild the layout, appropriate for Muffin, packing away the Lego sets. Honestly, I was stunned when he said yes.

And so, I undertook this mammoth task (White Fang collected Legos from 2009-2016, and nearly all of them lived on his layout since Muffin was born). Across two days, I attacked that corner of the basement with at first enthusiasm and passion; then, a twinge of sadness; then, eventually, a feeling of relief (and a fair number of impolite phrases).

As I worked, I couldn’t help but flash back to the first time White Fang built each of these sets, the joy and pride on his face when he finished, and the care with which he brought the new addition to the basement and chose a place for it.

The lighthearted way he said to me a few days ago, “I can always rebuild them,” threw words like mature and growing up into my brain, and tightened my throat.

I’m not crying, you’re crying.

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Although Muffin was at first reluctant (yes, after all that) to play with the new layout, he did, and enjoyed himself. Trains are not a huge passion for him, but he likes them, and the bridges and tunnels and pretending the engines are on a quest. So, while at this present moment the layout is resting, I know it will continue to be used in the future.

All my effort was worth it. As I anticipated it would be. I just didn’t expect…well, I didn’t expect to feel anything beyond sweaty and victorious.

Then there was the whole job interview/car shopping situation. These particular issues I haven’t mentioned here, partly because so much was up in the air, and trying to write about the in-progress stuff was turning me into a flailing, wailing, melting mess on the carpet. So, now that certain things have processed and concluded, here we go:

Since early 2016, I have been without a vehicle. I was driving an older sedan that was on its 8th life. Then, before I had Muffin, one bitterly cold winter day, I was on a country road, hit a patch of ice, and then a ditch. (And, yes, I was carrying Muffin in utero at the time. It was terrible.) After that, even with the (expensive) repairs, the car never ran quite right. And in January 2016, it reached a point of needing far more work done than we could handle; so we sent it to the scrap yard.

Hence, I have been walking everywhere, or somebody else’s passenger, for the last two and a half years. At first, it was all right; for probably the first 12 months, I didn’t complain. We couldn’t take on a car payment, and I was more concerned about my children having food and clothing. But bit by bit, this endless loop I’ve run to the post office and library and drugstore and back to my house has ground down my soul.

Last year, the pain of the endometriosis made pushing Muffin’s stroller up the hill practically unbearable. And I was really, really done with this walking setup. However, we weren’t in a financial position to get a second vehicle.

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Fast forward to now, and the fact that the song-and-dance of looking at cars, getting a price estimate, and continuing to look had begun — and then suddenly escalated. There was a vehicle quite near home that was affordable. And it was in good condition. And available immediately. So the purchasing bit happened pretty fast.

A lot of this had to do with the job interview I also had this summer. My first one in a while, because many of the positions I’ve applied for since Muffin was about a year old have never gone beyond me submitting my resume and getting a flat-out no (it’s already filled, or I’m not what they’re looking for, or whatever). This situation felt different, promising.

However, nothing more positive happened. And I was gutted. This always happens anymore; there’s just something about me that either makes people wary, or that doesn’t sit totally comfortably with them. Even if I don’t tell them I have autism, I’m nowhere near as good at masking as I used to be; I honestly don’t have the energy for it I did 10 years ago. So, even for the people that can tell there’s something “quirky” about me and don’t mind, it frequently means they end up hiring somebody else.

I am so tired of feeling like I can’t get ahead. At least I will have access to a car for errands now. That’s little comfort, though, since I was planning out a commute to a part-time income.

To everything, there is a season. I won’t regret saying goodbye to the season of walking everywhere. But I was anticipating replacing it with an entirely different sort of season, and I will miss that.

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So, because I need to focus on the good and remember what I have accomplished this year, I am running a sale for the remaining first editions of Masters and Beginners: Volume 1. Only $8 — yes, that includes shipping — per copy. If you’ve been meaning to start reading my YA fantasy series, this is a great time to go for it! All first editions feature precious Toby on the cover, and I’ll have signed it. I have Paypal, and I swear on my grandmother’s grave (she is in Heaven, don’t worry) not to share your address with anybody except the post office. And you can brag that you’ve chatted with the author and follow her blog. A heck of a deal, really.

My goal was to enter the finale of this summer with grace and new skills. Well, I did learn how to eat fried rice with chopsticks.

But otherwise, this transition can bite me.

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Autism, health

The Autist Goes Shopping

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There are times when I would much rather not enter a brick-and-mortar store.

It’s a quandary, because I really like being able to go up to the merchandise and touch and weigh and literally debate the pros and cons of this brand name versus that brand name for the same product. It’s satisfying. I truly feel I can make a better decision than just viewing a 2-dimensional photo on a website.

However, if I know exactly what I’m after, and one click, no muss, no fuss with a clerk, can accomplish the task, depending on the mood I’m in, and what the purchase is, I’ll take the virtual road more often traveled these days.

Social contact can be hard. Especially when the setting is unfamiliar, or the circumstances may change without warning. I don’t like it when I’m simply trying to buy groceries and someone treats me unkindly because I can’t make eye contact or can’t move as quickly as the other customers.

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This type of thing happens more frequently than many people want to admit.

It’s a sort of unspoken prejudice, that people who act differently from the cultural norm in public are shunned. And according to the soapbox of political correctness, they aren’t, so no one wants to discuss the fact that, yes, indeed, they are.

Because this sort of incident has occurred in my life more than I would like to have to confess to, I’ve limited where I shop in person.

It’s also been my experience that stores that hire people with disabilities are a lot more welcoming to customers with various challenges.

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In a world that makes you feel like you’ll never fit in, not even when you’re just carrying out basic functions like shopping for essentials, taking comfort where you can get it is important.

Autists may also have to avoid certain stores because the lighting is too bright, the inventory is too plentiful (and therefore making a selection too confusing), if too many people come in at a certain time of day, and a dozen other factors. “Just” needing to go out for new clothes or shoes can actually be very stressful.

Even when we find stores that fit our sensory and social paradigms, it doesn’t mean everything will go according to plan. We might not be able to find an item. It might be raining when we leave the building, and the umbrella is in the car.

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We don’t have to let the unexpected wear us down. We can take it all with a good attitude. We can look at running for our car through the pattering raindrops as an adventure.

But doing all of this is something much easier theorized than achieved.

So, please, bear with us. Please stop looking down your nose at people who aren’t quite like you, or keep expecting them to “adapt.” Please keep in mind the Golden Rule.

And the old adage that the customer is always right. No matter the kind of customer.

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Autism, Fantasy fiction, writing

The Speculative Fiction Conundrum

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So, here we are, almost to Realm Makers! (I’ll let you scream as much as you want, by the way, if you’re nowhere near ready.) It’s a big deal, because this is one of the few Christian writers’ conferences that focuses on speculative fiction (that simply means sci-fi, fantasy, retellings, dystopia, alternate histories — all the stuff we can’t know for sure or may be impossible in our world). Although I won’t be there in person, my books will be there (recent drama happened related to that, so cue my own screaming). But I really hope to make it to the conference physically at some point, since I have yet to have the opportunity of attending a writing conference that takes Christian worldviews and the “impossible” stuff and combines them, without batting an eye.

I’m proud to be a spec fic writer; honestly, I don’t see it conflicting with my worldview in the real universe at all, and it actually really rankles me when other people claim the opposite. There are, unfortunately, problems with writing spec fic that go beyond the religious discussions. It can affect many aspects of your author life.

For example, I’ve had a couple of people say they “didn’t get” my work, but they simply never read fantasy (and therefore, I truly wouldn’t have recommended my titles to them). While there’s no hard and fast rule that fantasy can only be read by people who have previously read it, there simply are folks who will never pick up a fantasy genre book in their lives. And while that may hurt your feelings as an author, for the most part, it’s genuinely nothing personal. It’s all about individual taste.

Spec fic has yet to be seen as mainstream, though. No matter the number of superhero and aliens-from-outerspace movies topping the box office, how many TV shows are produced involving time travel and AI and the zombie apocalypse, regardless of the fact that names like Neil Gaiman and Terry Pratchett, Holly Black and Cassandra Clare are consistently on the bestseller lists, we’re still considered a “fringe” element of entertainment and the arts.

And tossing aside what I said about not taking it to heart, sometimes that’s tough. When it comes up in conversation that you’re an author, and people ask what you write, and you say, “Fantasy!” and they get this glazed look in their eyes. When you purposefully wait until a certain librarian is on duty to request particular titles, because you really don’t want to have to spell out every single word to the poor frazzled person at the check-out desk. (Yes, this is absolutely my life.) When you can’t watch the season premiere of a favorite show because the rest of your family is watching the playoffs for whatever sport.

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So many of us don’t hold a grudge against the stuff we’re not into; we’re just bored by it, and we’d rather spend our free time analyzing what intelligent life on another planet may look like, how we’d get out of the labyrinth, or learn to cook Middle-Earth style. We don’t say to people, “Oh, my god, don’t waste your time with soccer/antiques/gardening!” Why, then, do we get such rolling-eyes, derisive-snorting, under-the-breath-laughing responses when we admit what our interests are?

It’s why lots of us are willing to travel hundreds of miles to attend a conference with tons of other people we’ve never met, just to be around folks who feel like friends within minutes, when you can simply walk up to somebody else and compliment their Star Trek shirt, and you spend the next 2 hours having coffee with them.

As a spec fic artist of any sort, you can sometimes feel isolated from the rest of your community. Thank God for Twitter, because I found a whole bunch of Christian geeks, before I even knew such a thing existed! And since my local library hired a staff member who watches/reads most of the stuff I do, I truly feel like my immediate social circle is widening. And though there are plenty of very valid reasons I won’t be able to go to Realm Makers, I do still wish I could — because I would, for once, feel at ease extroverting.

Occasionally, we can’t even win with the “mainstream” spec fic folks — the ones that feel faith and spiritual practices are ridiculous. Not that this covers all of them, not by a long shot. But indeed, the blending of Christian beliefs and fantasy or sci-fi or dystopia is a relatively new thing. Too many well-meaning people of the Church felt it was necessary to do away with superstitions and folklore throughout the centuries, until the idea of otherworldly creatures and dimensions and physics were reduced to Disney films. (This perspective also told agnostic/non-believing SF people that there was no room for God in their art, which has been just as damaging.)

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I take issue with so much of this, and I know I’m not alone. So, yes, we can all band together, and hopefully work through our own differences about religion and politics (the unmentionable subjects), and maybe, one day, the entire spec fic community will be on the same page (yes, pun intended).

Especially since Christian SF authors and artists have a lot of valuable stuff to contribute. We can encourage people to think about God, about society, about laws, morals and traditions in a very different way to those who write/draw/act/produce media minus a faith/spiritual-based foundation. We should be invited to the table, to openly debate philosophy and ideology, science and legend. Nor should we receive backlash from churchgoers for including magic and myths and fairytales in our works that also search for God and Heaven.

And we should be promoted just as much as non-SF artists. We shouldn’t get relegated to the back of the metaphorical room simply because of what we write or read or watch. We should have the chance to reach just as many people as our mainstream counterparts.

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I’m facing this quandary right now as I attempt to fix/work more on How To Be A Savage. It’s a completely contemporary piece (one of my very few), and there are days when I know I just can’t. I have to write about unicorns and mermaids and poohkas that afternoon.

It’s important for me to write HTBAS in a “real world” vein, since it’s addressing serious topics in the real world, and I want to make an impact on these things that I feel are necessary to hash out, for the sake of our children and future generations. Sometimes we can’t run off to a distant galaxy to do this (as much as we’d like to, myself included).

And I already know (without running a poll or anything) that this Own Voices novel will interest more people than my fantasy series. There are folks who won’t hesitate to pick up HTBAS, and have never heard of The Order of the Twelve Tribes. And all of this is hard for me not to take personally.

Yet, my goal for Savage is to educate people about autism, on a broader scale than my autistic characters in Volumes 1-5. There are different standards, different expectations — of my own making.

As I said, the conundrum.

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Autism, reading, self-publishing

A Discussion on “Own Voices”: Lasting Impact or a Flash in the Pan?

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So, about a year ago, I noticed a trend among #amreading folks on Twitter: Several posts included the mention of #ownvoices. It’s a movement started by an author and editor named Corinne Duyvis, whose intention was to increase the number of books being written/published by people in racial, cultural, medical minorities, and the impact these titles have on the public/the majority.

I think this is a great idea. As someone who looks like she shouldn’t belong to a minority group (being Caucasian, American-born, and physically capable), but has faced prejudice and discrimination all her life due to “the invisible disability,” encouraging firsthand accounts of conditions that may be unimaginable to most readers sounds awesome.

Here’s the catch: Too many publishers aren’t accepting manuscripts from, for example, writers on the autism spectrum or with a learning disorder. They’d still prefer to have established, NT (neurotypical) authors conduct interviews or textbook research, and come up with a story around that involving, say, a character with Asperger’s syndrome.

This is a definite problem. If you’re not autistic, how can you possibly hope to really capture all the nuances of what that life is? If you aren’t an immigrant to a certain country, will you truly understand how that experience works? If you’ve never been in combat, would it be truly effective for you to pen a first-person narration of a veteran with PTSD? The list could go on and on. The point is: Firsthand experience makes for the best fictional stories, because they are authentic.

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That’s why I support the Own Voices idea, and it makes me sad that more of it isn’t happening. And I believe this also suggests a bigger issue within our society — that all the campaigns towards “acceptance” and “tolerance” aren’t truly making an impact. Or, that the people in important-decision-making-positions — like whether or not to publish a certain book — aren’t really “tolerant” themselves.

And I don’t feel hypocrisy is too strong a word to use.

A major reason I’m not participating in “official” Autism Awareness Month is hypocrisy. The group “Autism Speaks” (that promotes such campaigns) claims to be invested in creating inclusion for ASD within “regular” society. However, what they’re really advocating is research to find a cure for autism. While some of us would take a cure if it was offered (and I’m absolutely not judging that), many of us wouldn’t, and wouldn’t want it forced upon us.

Isn’t that the point of something like Own Voices? To build bridges, rather than widen the chasms between “normal” and “atypical”? To encourage the perspectives on what’s “normal” to broaden?

It appears that the Own Voices movement may be dying before it even really gets off the ground, and this concerns me. As a writer belonging to a minority, as a parent of children in that same minority, and as a reader who has lots of difficulty finding characters and plots I can relate to.

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It concerns me as a self-published author. I am trying to make money from sales of my work, the result of enormous effort and time, and it’s one of the few options open to me at the moment.

Until I had my second child, I was working in daycare and teaching dance. But in both of those positions, I faced severe stigma from co-workers and administrators who really would’ve preferred an NT individual in my place. Most of the parents I worked with were totally fine with me teaching their children — and so were many of the children. But conformity is a big deal in industry, and it spoke louder than the soapbox of “inclusion.”

While I voluntarily took an extended maternity leave, and still hope to return to teaching at some point, in the meantime, I’ve found a fair amount of success in self-publishing.

For years, I sent queries and pitches to agents, who loved 90% of the submission, but…and there was always a but. There was always something “missing” — that part where something my character or plot did only made sense to me. And the reason for that was because my characters always did things the way I would, to protect themselves from emotional reactions or social situations they didn’t understand. It turns out “most people” don’t behave like that. Well, it’s “normal” for me.

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Anyway, I’m presently choosing not to write a contemporary or bio-based Own Voices story. (I did try recently, and the feels were 110% too much.) Though I am including autistic characters in my YA fantasy series. And while I’ve had much positive response to my books so far (and of course am dying with gratitude for that), I’ve also had some mixed reactions, from a few folks who “just didn’t get it” when it came to my style.

Now, I know some of this will simply be personal taste, which varies. However, when you consider that I, as an autist, am certainly from Planet XYZ, and most people who read fantasy novels are from Planet A or Planet B, this makes me twitch a little.

It goes back to my original issue about people accepting autistic authors. Will readers pick up my book(s) just because I’m autistic, and they want to be perceived as “inclusive”? Or will they look into my work because they like fantasy and think my series sounds good? And do I want them to order my book(s) for just the latter reason, or the first as well?

I’ll admit, I’m more than forthcoming about my being on the spectrum. I do want readers to critique my work based on its literary merits; but I also don’t want them to dismiss it offhand, saying, “Oh, if the author’s autistic, it’s probably not very good.” I also want NT readers to understand that, although I process the world differently than they do, that doesn’t automatically mean they won’t comprehend or appreciate my fiction.

Overall, I think that Own Voices, unfortunately, still has a long way uphill to go. I’d hate to see it burn out before it really lights a flame.

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Autism, community

The Time To Stay Silent Has Passed

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Okay, it may make me physically sick to have to write this post, but I do have to.

Yesterday it came to my attention that there’s a non-fiction book, being peddled as an “autism mom memoir” entitled “To Siri With Love,” by a barely human person called Judith Newman. She has an autistic son, and relates throughout the entire book how she sees him as inferior, not a whole being, and actually blatantly says she believes so strongly he shouldn’t have children of his own that she plans to have him forcibly sterilized when he’s 18.

Bucket, anyone, bucket? Yeah, I should’ve offered to hand them out before you started reading.

So, after getting this initial shock to the system, I went on Goodreads, and found that plenty of people (most of them autistic or with ASD relatives) are up in arms (thank God) about this farce of a publication, and are actively boycotting it.

Sadly — horribly — unimaginably — there are also plenty of 4-star reviews, and this book is on the bestseller lists in some countries.

That’s right — in this supposed “advanced” era of “humanity,” we actually live in a world where people support the view that someone with a neurological condition that makes him or her “different” or “limited” does not deserve control over their own lives, reproductive rights, and major personal decisions.

Second round of passing out buckets going on now…

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…And I’ll hand out ear plugs before I begin my absolutely justified rant.

I AM AUTISTIC AND I HAVE PRODUCED TWO BEAUTIFUL, AMAZING, NEURODIVERGENT CHILDREN WHO ARE GOING TO CHANGE THE WORLD FOR THE BETTER. WITHOUT PEOPLE LIKE US, THERE WOULDN’T BE SOME OF THE MOST INCREDIBLE SCIENTIFIC, TECHNOLOGICAL AND LITERARY ADVANCES OF THE 20TH CENTURY. WE ARE EXACTLY HOW GOD DESIGNED US TO BE, AND IT IS HIS CHOICE, NOT THAT OF MERE MORTALS, WHAT OR WHO IS WORTHY OF LOVE AND HAPPINESS AND BEING CONSIDERED WHOLE.

WHEN PEOPLE THINK THAT REDUCING AN ENTIRE POPULATION TO PREVENT A SOCIAL OR CULTURAL CONCERN IS A GOOD IDEA, THEY ARE BECOMING MURDERERS. IT IS CALLED GENOCIDE, AND EUGENICS, AND IT IS COMPLETELY WRONG AND SHOULD BE ILLEGAL IN EVERY SINGLE CIVILIZED NATION ON THE GLOBE. 

If you need any further proof that this point of view is utterly evil: The Nazis ran programs in the concentration camps to forcibly sterilize those with physical and mental disabilities.

Okay. *clears throat and dries eyes* Time to get our warrior outfits on.

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Don’t stay silent. Stand up for your autistic family, friends, and online contacts. Even if you don’t know anyone on the spectrum, stand up for the justice of letting us live our lives.

For those of you on Twitter, the hashtag is #BoycottToSiri. Otherwise, talk up this subject on Facebook, Goodreads, WordPress and Blogspot. Don’t let people think this title is acceptable to purchase. Write the publisher and holler. Write to Congress and yell.

I have also joined the hashtag #ActuallyAutistic, which encourages autistic writers to share their voices — whether their work features ASD or not, and whatever genre, style, or age group we write for — and you can spread the word that way, too.

The autistic community — MY community — needs your support. We ARE your classmates, neighbors, cousins, co-workers, online contacts.

We can’t combat fear and hate all by ourselves. We don’t want to feel alone anymore.

We DESERVE better.

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