Autism, writing

NaNo Update: Changes, Plotting, and Some Pantser-ing

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Okay, so I have decided to become a magical unicorn — with 11 days to go before NaNoWriMo begins, I changed my project.

Prior to this move, I had been suggesting to myself that I really should start on Volume 3, since my intention is to have the revisions of Volume 2 complete before November 1st.

However, we are rapidly approaching the wire, and I was not feeling it.

In the last couple of months, I have worked so hard on Volume 2 that I just didn’t want to turn into a melted puddle of disgruntled, worn out, second-guessing sequel-writing author.

This would be a very bad thing to have happen during NaNo.

My brain needs a break from focusing on a “pretty serious” novel. So I’m going to give it said break.

Instead of Volume 3, my NaNo project will be a more fun (in theory), more easygoing (hopefully), less-this-could-make-or-break-my-career novel.

I’ll be attempting a contemporary that’s part autobiography, part fiction, all about living with autism.

My working title is “How To Be A Savage.”

This comes from the fact that White Fang says hilarious things at least 17 times a week, and one of his favorite remarks lately (when he does something like eat fork food with his fingers, or kills another player in a PvP video game) is, “I’m being a savage.”

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The other major reasons I’m trying this out are as follows:

There is not enough accurate and realistic — and simultaneously compassionate — representation of autism in current fiction. It took the medical community itself long enough to understand ASD better, and now the public is taking too damn long (in my view) to catch up. We’re still too often seen as a textbook of socially dangerous symptoms, rather than as real people with a neurological condition that simply makes us different from the norm.

None of this is good. I’ve been marginalized my whole life, and I want so much better for my son. In writing a novel from a first person ASD POV, my hope is to raise not only understanding but also tolerance.

So, what does this mean for my usual style of writing? Well, setting the story in the real world — super scary, by the way — will certainly be a departure from what I’ve been concentrating on for years. No magic, no fantasy-is-actually-fact. (Though there will still be plenty of geek references; that’s never changing.)

Despite having a general premise and the bare bones of a basic outline, most of it will be coming to fruition on the page, at the moment that I sit down to type it out.

This is rather different, as I like to plot ahead of time. Does this give me nightmares? No…but I am a little nervous. Winging it is not something I usually do.

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It will also feel very memoir-ish, and may be pretty damn hard for me to write at times. In relating what it’s like to live with autism to people who may have absolutely no idea what this entails, I’ll have to be brutally honest and forthcoming. Trying to explain neurodiverse pathways, physical issues, emotional difficulties, social challenges, and the choice whether to take meds or not — all in a first person narrative — will be extremely personal.

While I don’t believe writers should always write what they know, there are instances where firsthand experience is the best for showing the perspective an outsider probably would (not even intentionally) get wrong.

So, while I am nervous, I am also excited.

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For those of you who may be unused to the idea of me writing something other than fantasy — relax, I’m sure it’s a passing phase.

For those of you who like to see authors try an idea outside of their norm — I hope this hits all the right notes.

There has been a lot of support for this announcement on Twitter, and I greatly appreciate that.

We’ll see what the next few weeks bring!

If you’d like to follow my updates on Twitter, check out my account referenced in the sidebar.

You can also follow my book reviews or the blog on Goodreads! If you look up “Daley Downing” as an author, or search for “Masters and Beginners,” you should come across me!

And if you’re also participating in NaNo and would like to add me to your buddy list, I am found there as The Invisible Moth (imagine that).

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Autism, television

Thoughts on The Good Doctor

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So, remember the post I wrote a couple months ago, stating that I had pretty much stopped watching TV? Well, this is not a done deal just yet — thanks to the premiere of The Good Doctor.

The Good Doctor is an American version of a Korean program, and the premise is that a medical student with autism gets to train at a hospital on a surgical residency. To say that this alone would suck me in is a huge understatement. I almost cried every time the ad came on the whole week before fall season premieres. It was torture, I tell you, Spock.

Anyway (for a refreshing change), this show did not disappoint. Dr. Shaun Murphy is utterly real and precious (and yes, I know it’s an actor portrayal — shush, I’m getting there), and he is so beautiful to watch.

Freddie Highmore (an NT British actor) has done an absolutely excellent job of learning how to depict autism realistically and not patronizingly. This is the first time I’ve seen stimming portrayed, as well as accurately not making eye contact and not knowing what to say or what tone to use. There are moments of long pauses, or simply not answering questions, and Murphy focuses so much more on a corner of the ceiling or the fly on the window rather than on someone’s face. I literally have BEEN there so many times, I am SOOOO grateful to know other people recognize this in ASD-ers, and some of them even ACCEPT it.

Pass the tissues through the opening in the blanket fort, if you would, please.

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Of course, for there to be a plot, there has to be conflict, and some of the doctors at the hospital think that hiring an intern with autism is ridiculous, even dangerous. While Murphy often gets stuck with doing triage and reading x-rays, he also saves lives — by spotting a minor blip on a scan that actually denotes a serious medical problem, or listening to his instincts and refusing to follow protocol.

Murphy doesn’t think for a minute that everyone is like him — he perfectly understands that he has a condition that much of the world finds unusual or strange. When he can (when he’s not stressed, or when he can find the words through practice or conditioning), he explains to others why he doesn’t respond to a social custom or NT emotional process. Yet, while he is quite aware that he’s learning how a majority of humanity operates, he never for once sees the need to apologize for how/who he is.

YYYYEEEEESSSSSSS.

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There are scenes in which Murphy says out loud things that I have thought my entire life and always been encouraged to keep to myself. For example, the episode where he says, “On the day the rain smelled like ice cream, my bunny went to heaven,” my eyes were wet for the next 10 minutes. (And remember, I am half Vulcan, so that’s a LONG time, folks.) He processes memories and sensory information so differently from any other doctor (or most non-doctor people), and yet this is exactly what makes him special, brilliant, valuable in his field. The fact he has such a strong and encouraging mentor (Dr. Glassman) completely makes my heart sing.

While we’re only a few episodes into season 1 of this show, and there will doubtlessly be some things I take issue with (why are the other doctors so mean to him, give him a chance and quit being so narrow-minded, you nitwits), I hold out hope that this depiction will help raise not only autism awareness but autism ACCEPTANCE. Just being different does NOT mean there’s something wrong with us. We are still important to the world — and guess what, since we were born this way, God knew just how we’d be, and He let it be so.

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Historically it’s been proven that those who change the world the most — for the better — think differently than the masses. You know the guy who came up with E=MC squared? Yup, historians believe he had Asperger’s syndrome. The guy who wrote those adventures of a little Victorian girl in Wonderland that we all love so much was also suspected of being on the spectrum. And then there are the big ones — the man who signed the paper ending slavery in America, and the man who led England through World War II, are both thought to have had either some minor form of ADHD or spectrum disorder.

So, why can’t I be a bestselling author? Even though I have to take several months to finish a book, and stim while I write, and literally bust my butt to make sure my NT characters are behaving like real people? Why not?

Seriously, I’m The Good Author.

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Autism, television

Just the Two of Us

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So, recently, I posted a snippet on Facebook and Twitter about this fantastic episode I caught (while scouring the cable networks in one last-ditch attempt to discover some redeeming qualities in current TV broadcasts).

Stitchers is a program I’ve watched several times before, so I was familiar with all the characters and backstory, and even had a good idea of what was going on without needing to watch the “previously on…” part.

What drew me to it this particular day (about 2 weeks ago now) was that, in the summary, the words “autism” and “empath” were mentioned.

For those of you who aren’t familiar with this show, the premise of Stitchers is that a secret organization founded by the American government uses advanced technology to solve homicides by “stitching” into the memories of the recently deceased individual.

Unfortunately, it has (in my view) become too formulaic, and most of the plots are now too predictable. Also, I don’t really care for the direction the showrunners are taking most of the character development. But, this is just my opinion, so, please don’t let that stop you from watching the show if you’re interested.

Episode 7 of Season 3, entitled “Just the Two of Us,” is a breath of fresh air in many ways. It cuts out the usual (tedious) plotline of find-clues, snarky-banter, confront-the-killer, and instead focuses on the details of the “stitch” itself. It turns out that the stitcher, Kirsten, is stuck in the memories of their current case, and she needs to work through it via the mental process of the victim. The reason this is especially challenging for her is because the victim was autistic, and of course how his brain works is not what most people are used to.

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Whenever I become aware of autism “rep” happening in TV/movies, I develop a skeptical perspective until they’ve proven this rep to be accurate and encouraging. The writers and directors of “Just the Two of Us” have (rightfully) earned my respect.

They did a fantastic job of covering sensory perception disorder, trouble recognizing facial/social cues, obsessive behavior, and even the not-so-kind way NT folks may view someone like Tom (the murder victim) as a burden — but never once indicating that Tom was acting maliciously or could have prevented his autism.

This is also the first time I’ve seen a storyline that addressed something that most NTs have very little to no concept of — super-heightened empathy. It’s hard to explain, but basically it means the autist physically feels the depths of somebody else’s emotional responses. For example, if we’re around a family member who’s just lost a job, we feel weighted down by the physical aching and pain of the disappointment, confusion, anger or sadness they’re emotionally processing. It often upsets the autist, since we can’t explain why our heart suddenly pounds, our chest aches, we want to cry or scream, when the thing didn’t even happen to us.

I haven’t experienced a lot of this in recent years (a side effect of burnout, maybe?), but ages ago, it was so strong I simply could not attend church services that strongly moved people, funerals, films with tearjerker endings, etc. I have never come across this mentioned in textbooks or non-fiction memoirs on autism. So this inclusion was amazing to me.

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The fact that Kirsten has to explore Tom’s POV so intimately (as if it were her own) is incredible. Not only does this definitely bridge the gap between unawareness and awareness, misunderstanding and understanding, it makes Kirsten so truly tolerant of another’s way of living and that it was totally normal for him. I just loved how the writers set up the script and screenplay, so that Kirsten and her love interest, Cameron, both vicariously saw things through Tom’s eyes in the stitch, which was a subtle and clever way of giving crime-clues to the audience, but also so tremendously beautiful in demonstrating the pros and cons of Tom’s ASD.

Not once in the entire 43 minutes did I feel that Tom was being overtly blamed for things he could not control and must have struggled with his entire life. Having been persecuted the majority of my existence for simply being “different,” I wanted to high-five the people who made this storyline come to the screen. (Okay, that’s a little understated. I wanted to write a letter of recommendation for their resumes and buy them coffee and make them a commemorative art piece for the episode.)

I pushed everyone I know on Facebook and Twitter to download this and watch it with an open mind. I’m doing the same now here. You don’t have to be a regular viewer of the show to benefit.

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There were so many little things, hints, moments, and whole scenes, paragraphs of dialogue, all that I simply loved. But I’ll wrap up with this:

At one point in the stitch (when Kirsten and Cameron are unwittingly perceiving the situation via Tom’s ASD traits), Cameron relates to Kirsten a situation that was actually part of Tom’s life; at the end of the conversation, Cameron says, “Thank you for listening,” and Kirsten replies, “Thanks for talking to me.”

Later, in the final scene, after Kirsten has figured out who the killer is, she says to the passed-on Tom, “Thanks for talking to me.” I cannot EVEN with how much this made me cry. It is such the absolute truth for so many autists — not only do we want people to listen to us, we want to be able to share our thoughts and feelings, without fear of being judged or told to change.

Kirsten didn’t just listen to Tom, she accepted.

It’s how they were able to solve his murder, together. It’s how Tom helped Kirsten deal with some personal things she was really having trouble with.

She grasped the beauty of what it can mean to think differently.

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Autism, family, Parenting

Runt, Inc.

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Years ago, when White Fang was little, we referred to him as “the Runt.” Obviously he grew out of physically or emotionally fitting that title, yet we still fondly remember. We joked that the name of our family business (which we do not have) should be Runt, Inc.

Now we do actually have a Runt once again. But interestingly, we don’t refer to Muffin that way. It’s like White Fang secured that term so concretely in our memories that we never even considered applying it to Muffin.

Yet in so many ways Muffin does fit the idea of “a runt.” He was tiny when he was born, and he’s still a pretty little guy. However, White Fang certainly taught us that “runts” are not to be underestimated.

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White Fang was diagnosed ASD at age 4. He couldn’t speak proper words or sentences then. He needed occupational therapy and went to a special needs preschool for a year. He only graduated from speech therapy in 6th grade.

But he’s also spent those years learning to play percussion, singing in chorus, making the honor roll, and now he’s a programmer in training.

Muffin spent the first week of his life in the NICU. He still has to go to physical and speech therapy, and has fought hard to be as mobile as he is. He survived jaundice, acid reflux, lazy eye (and its surgery).

White Fang has sensory issues with texture, smell, and taste that mean he’s not a fun person to cook for. But he’s a master at changing diapers.

He and Muffin already have a very strong brotherly bond. I already know they will be there for each other in ways I can’t even imagine yet. White Fang knows what it’s like to have a rough start in life, and that you don’t have to let that define you. Muffin only knows his big brother takes care of him and plays with him and looks out for him. But he loves White Fang, too; and to Muffin, the ASD is normal. I have a feeling he’ll have White Fang’s back in ways we can’t even imagine yet.

So, yeah, don’t underestimate the runts.

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Autism, family

The Lens

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We all see the world through a lens. We often don’t want to admit it, but it’s true.

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But we need to speak up. Not the neurotypical folks who profess to have our corner — those of us on the spectrum. A lot of NTs do love us and support us being who we are — no forced conforming, no cure. And that’s the part I want to address right now.

We are not “broken.” We do not need to be “cured.” We are simply a way of living, a way of being that the rest of the world hasn’t caught onto yet.

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I put all these pleasant pictures in this post to remind myself that I don’t want to go on a rant today. There are other things I have to get to, and they feel more important this morning than focusing on the negative.

In a very loud and busy world, we are the quiet, the simplicity, the sense of taking a deep breath for the pure reason of feeling the sensation of our body and mind filling with fresh air.

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We hold up a lens to the world, and adjust it until we find the stillness, the colors, the tranquility of rest.

We love, we laugh, we observe. We think, we explore.

We create music and art, we write and some of us dance. We know the power of words and feelings, maybe better than most.

We hope to be accepted, because we really don’t see any reason to change our perspective.

Being appreciated as we are, and even respected, would be just great.

Hopefully one day there will be no need to adjust others’ lenses.

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Autism, health

Autistic Burnout

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So, this is such a very personal post, and I wasn’t even going to bring it up.

I changed my mind. A dozen times. Finally landed here.

I’m suffering from what’s known as autistic burnout. We can all think of a time when we got burned out — like after finishing final exams, or graduating, planning a vacation, a wedding, moving house, having a baby — blah de blah. (Please excuse the sarcasm. There might be a lot of it.)

Anyway, here’s where it’s different for autists. The burnout comes not just after a period of prolonged or intense stress. It affects literally every part of our lives — our sleep, our appetite, temper, patience with children or misbehaving pets, the little annoyances of co-workers/spouses/neighbors/grocery store clerks. We are suffering greatly inside, and it often comes off as we’re being insensitive or rude or just selfish.

We’re not. We don’t mean to be.

The walls are closing in on us. It brings about panic attacks. Insomnia. Depression.

It goes on sometimes for a while. (Like months instead of a few days.)

Basically we’ll start to get control of the immediate situation (like we’ve quit a job, completed a course, taken a vacation, cut back on caffeine), and we’ll feel sort of better for a week, or even almost a month. Then we’ll have a meltdown because there were one too many phone calls that morning, and are back to square one.

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None of this is a choice. It becomes pure physical reaction based on anxiety created from overstimulated nerves.

IT SUCKS.

I have no concrete plan for complete recovery. Oh, there are suggestions — research and support organizations think therapy, or a support group, a vacation, cutting back on responsibilities, learning your limits and sticking to them, not pressuring yourself to “fit in” (pretend not to be ASD), could all help with recovering from/preventing burnout. All of this sounds fine. The problem for me is that my personal circumstances make a lot of it tough — I don’t always have reliable transportation, someone to watch Muffin, limited insurance — blah de blah, you get the idea.

Part of my plan so far includes not taking on anything new (for example, forget Camp NaNo, and not committing to posting more than twice a week for the rest of the summer). Also I’m trying to get my family to understand that I need more alone time, and if I don’t want to go to this event or on that day trip, it has nothing to do with them.

This will be a process. It may be a long one. (I am starting to hyperventilate at the very thought.)

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Sleep would also be really nice, but it’s a rare commodity in my household. Eating well is definitely advised. Not that I feel like cooking a lot of the time. Blah de blah…

I guess the major thing about this feeling is the concern that getting to the light at the end of the tunnel is…well…so–far–off.

Putting in more work on something that has already worn you out is not at all exciting, or even feasible.

I’ve come across a few things on blogs, vlogs, and group pages that suggest this is more likely to happen to autists nearing preschool age, adolescence, or middle age — because these are all times in life when the body and brain are growing or changing quickly, and that means for us we’re exerting even more effort into a process we have to go through, anyway. Our neurons and metabolisms are just exhausted afterwards.

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So, what is the solution? Well, for some of us it might be quitting a job, changing your living environment (everything from redecorating to moving), not participating in that bake sale, taking a hiatus from college. I’ve already cut back a lot, though — deciding not to worry about going back to teaching dance until next year, decreasing the pace on finishing Volume 2-4, not scheduling any appointments for Muffin that can be put off until fall.

But I can already tell just recognizing what would overwhelm me isn’t going to solve it all.

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I think I need not to read anything potentially upsetting for — well, this side of forever. Keep my TBR to re-reads of confirmed favorites and middle-grade fluffy fantasies.

I think I need to avoid potentially upsetting television — so, that’s the news gone. Okay, everything, really, except for Jeopardy! and The Big Bang Theory with White Fang. And kids’ movies.

Probably explore more instrumental music. Burn candles again. Borrow a stuffed animal from my kids for sleeping. Maybe try more vegetarian food.

Make the cat sleep with me every night.

Don’t even attempt to debate anything with anybody on social media.

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So, this has been a rather whiny post, and if you’ve made this far, thank you. (I mean it.)

Please enjoy the re-posts, and your own summers and families. I do love you all, and I so deeply appreciate all your support.

Wh-hine…

Deep breath.

Roar.

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Autism, community, movies

I’m Sorry, But I Just Don’t Get…

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Okay, this is probably a silly post, but I honestly have to say this is something that’s been troubling me. In the last few months, there’s been some major buzz around the new release of the Guardians of the Galaxy sequel, and the first new Wonder Woman film in forever. My Twitter feed is blowing up with the excitement over all of it. And I’m…well, I’m significantly — unimpressed.

Maybe it’s just an autism thing, but these are two realms of fandom that I may never be able to relate to. My true, heartfelt, unedited feelings towards Guardians of the Galaxy (yes, I saw the first movie) were: “But this is a group of criminals, fugitives from various transgressions against a variety of civilizations, including a talking tree and a talking racoon that just don’t do justice to either of those concepts…the green alien lady is seen as a traitor to her own people, and some random human kidnapped with only the greatest hits of the 70s in his Walkman becomes their leader? HUH? Why does the ruling class with all the power and the technology see them as a threat? And why would I see them as anything I’d want rescuing me?”

And then when I saw the trailers for Wonder Woman, my immediate reaction was: “Oh, don’t tell me they’re bringing back that nonsense, not when the feminist movement has come so far.”

(Man, am I going to get some flack for this.)

And in a way I feel bad, because so many people (in a lot of instances, people I know) are really happy that there was another Guardians of the Galaxy, and were really excited for Wonder Woman. And part of me also wonders why I can’t see beyond my initial views to grasp what they appreciate about these concepts.

But I’m struggling. I just can’t find a talking tree that only says the same thing over and over again amusing. I simply don’t see true feminist values in an Amazonian’s costume that shows off much more skin than is necessary to go fight bad guys.

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And I don’t want to hurt anyone’s feelings — I am a big subscriber to the “live and let live” view of surviving this existence. If you are totally in love with either/both of these fandoms, then go you. I’m glad it works for you, honestly. But I may have to just resign myself to not being part of it.

When I think of flawed superheroes, I think of Iron Man, and am satisfied with it. When I think of kick-butt women who personify using their feminine wiles to their advantage, I think of Natasha Romanoff/Black Widow, and I’m satisfied. Again, these are just my opinions. But they come from ideas that I hold dear and true to my core.

While I’m all for people who make mistakes being given second chances, I’m not for them getting broken out of prison — where they’re supposed to be facing the consequences for their bad choices — and suddenly saving the city (even when most of the citizens hated them?!), and then soaring away on their probably-stolen spaceship, all based on who the random human’s father supposedly is (and introduced way too late in the movie for me to buy it, sorry, folks).

While I’m all for women not “needing” men, and all for women superheroes, I just don’t (and probably never will) condone their “proving” it by running around in little more than a bathing suit. It’s extremely objectifying, it’s extremely sexist, and extremely impractical.

As a female on the autism spectrum, I am a rare breed. Most of the high-functioning ASD-ers do happen to be male, for whatever reason, and until recently, many girls who are Asperger’s or closer to PDD (that’d be me) were misdiagnosed as ADHD or anxiety/depression. And still, there aren’t that many of us. Take a room of 20 people on the spectrum, you’ll most likely count 15 boys and 5 girls. I have no answers for this variance, just the facts.

But what concretely puts us on the spectrum is certain neurological patterning, such as rigid thinking and a very low tolerance for “changing rules” morality. What I mean by this is: Why is it, in one movie, a man who robs a bank has to go to jail to atone for his sins, while, in another movie, another criminal is allowed to rob the banks of 14 planets and get away just because he has what that galaxy considers an awesome soundtrack?

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I may never be able to suspend my natural disbelief of such a notion to enjoy Guardians of the Galaxy. I may never comprehend why women have to fight to vote, to run for office, to go to school, to marry whom they choose, but also apparently have no problem with letting their clevage do more talking than their sword.

And yet, I wish I could be part of the enthusiasm surrounding these fandoms. Both these films — from a production-quality view — seem well-made and should be fun to watch. However…

Like I said, I keep coming back to these sticking points, and they are major for me.

I feel like I’m being invited to the party but I may never join in. And that feels like far too much of the rest of my life. I constantly avoid social gatherings, meeting people, going to new places because my sensory perception doesn’t like lots of noise and crowds and spaces that might not be warm/cool/big enough. And while I stand behind my right to avoid for the sake of my health (I will get panic attacks, migraines, etc.), I also don’t like the idea of never trying at all.

Sometimes I think about the idea of meeting in person someone I know well online. I believe I could do it — as long as I picked the place, the time of day, the environment, the, well, everything. And honestly, it’s not being “picky” or even “neurotic” — it’s protecting my physical health. Unfortunately, most people don’t understand that yet. Aren’t there superheroes that defend autistic values?

Maybe one day there will be?

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