Autism, community

Autism Acceptance Is The Goal

Valparaiso Art Festival - Valparaiso Events

So, today is Autism Awareness Day. There have been and still are and will most likely continue to be a variety of debates around this phrasing. Why? Because making neurotypical people simply aware that autism exists accomplishes about nothing as to what happens next.

Every time the human race learns about something new to them, the immediate question then becomes: Well, what do we do about it? Humans, in case anybody hasn’t noticed, aren’t really content to just let things be. This includes autism.

Autism has been seen as everything from an inconvenience to a plague upon society. (No, the irony of saying that while a real pandemic is going on does not escape me for a second.) Autistic people have, for years, been made to feel that how we naturally are is some sort of horrible mistake, and that we should either strive to become “like everyone else,” or at least feel bad about being different.

After being stuck in this cycle for decades, forced to believe it, and not fight against it, finally, one day, we autists became convinced there had to be a better way…and we started saying: “What happens next?”

The research, the stats, and our own experiences showed: Autistic children grew into autistic adults, and our sensory perception, social interaction challenges, and emotional processing difficulties did not go away. Yes, we could learn what others considered appropriate speech and tone and mannerisms; yes, we can frequently apply them. We can go to concerts, sports matches, the cinema, the theatre, camping and college and work. We can take public transportation, go to the grocery store, figure out how to create a Facebook account. Yes, we function very well in civilization.

But at what cost?

Because the bus is ALWAYS too crowded, the campground too muddy, the bar too loud. We will NEVER stop craving peace and quiet, and wondering if it really mattered that we didn’t get that joke all our co-workers laughed at.

In the midst of transitioning from thinking of ourselves as how the world thinks of us, to how we view ourselves, we discovered that the biggest barrier is NOT a lack of awareness of autism: It’s a lack of acceptance.

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You probably hear me banging on about this pretty often. With good reason. This is the hill I will die on: Being autistic does NOT make people less, nor should we have to change to make others around us feel more comfortable. We don’t need more organizations founded by neurotypicals explaining to other neurotypicals that we have “an intellectual disability that impairs motor function and social connectedness.” We need people who don’t relate to how we live our lives being OKAY with us being US.

We don’t need pity; we need tolerance.

We don’t need cures; we need accommodations.

What’s the point of making us just like the rest of the world?

It makes us less scary to those who place conformity above equality and liberty. And the god of Conformity has a pretty big altar in many civilizations today.

Who does it actually benefit when we’re forced to stop stimming, to mask our natural behavior? Not us.

Who will have a better quality of life because we aren’t automatically picked out of a crowd as neurodivergent? Not us.

This is how those of us diagnosed with ASD have been forced to live, for a very long while. When does it change? What happens next?

Art I love | fzwta19

I’m only one of many who wish for a world that doesn’t find it necessary to draw attention to my “quirks.” That sees the value in looking at things from another perspective. That won’t strive to take away parts of myself, claiming it won’t hurt.

It seems we’re born autistic, which means we don’t have any more control over it than our skin color or ethnic heritage. We can’t decide to be on the spectrum. But you can decide how to treat us.

Today, please note that #ActuallyAutistic individuals on Twitter are promoting a new symbol, a rainbow infinity sign that we are pushing over the blue puzzle piece, selected for us by neurotypicals who feel autism is a plague that needs a cure. We want to present as fact that we do, and should, feel pretty good about being us.

That ideal world I spoke of does not yet exist. (At least, not here on Earth. If it is somewhere in the galaxy, let me know, okay?) So we have to keep trying to make it.

Yes, it is a fight; people with intellectual disabilities being seen as equal is one of the newest waves in civil rights struggles. And we need advocates on all fronts: In our families, our schools, politically and legally, medically and socially.

If you’d like to join us, please, today, speak of acceptance. That’s the crucial word now. The cause, the goal.

We’ve already accepted that you think we’re different.

Now we’re asking you to accept that it doesn’t matter.

Fox painting by Art Jongkie | No. 657

Autism, health

Why Ableism Hurts Everybody

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Why, yes, I am starting with such a controversial title.

This is a topic I’ve been wanting to tackle for a while. Now, remember, some of this is purely my opinion, but much of it is general consensus by the #ActuallyAutistic community, so while it’s still subjective, it should be accepted as good authority on the subject. And I’m warning potential trolls right now, I will not hesitate to block you.

Because, while everyone is entitled to their own views, you don’t have the right to tell someone else — who is living a completely different physical and mental experience than you — that theirs are absolutely wrong.

Okay, here we go…

The definition of ableism is someone who is without disability, disorder, or medical condition, and who believes that they are therefore superior to people who do live with any of the aforementioned. As recently as 30 years ago, a lot of “normal” people were kind of ableist without even realizing they were behaving in an offensive way. (Sort of similar to growing up in a culture where many are racist — if you’re not taught differently, you’ll think this is a regular state of thinking. Which is why the cycle has to be broken somewhere. More on that in a second.) Up until the early 21st century, very little was known about autism, learning disorders, various mental health issues, etc. — in some cases even by medical professionals — so terms like “retarded” weren’t considered hurtful or inaccurate.

Nowadays, though, a growing number of the general population knows better. Many doctors and psychologists have reclassified autism from a mental illness or a disease to a condition or disorder. Treatments to help manage anxiety and sensory-perception-induced stress are a lot more common now than even a decade ago. Some businesses, such as supermarkets or theaters, offer “autism-friendly” hours for shopping or attendance, and the lights will be turned down and crowds of people not permitted in.

All of this sounds like society as a whole is becoming more tolerant of the smaller groups traditionally relegated to its edges. Unfortunately, that’s not entirely true.

Too many of our relatives, neighbors, teachers, classmates, co-workers, employers, and random people we may cross paths with still look down on us, feel pity for us, and wonder why we wouldn’t do everything we could to become “normal.”

Here’s the reason this is ableist: Someone believing our lives will be less if we don’t go to the cinema, concerts, sports matches, or even drive in rush hour traffic is unfair and unbalanced. Such a view imposes simultaneous expectations and restrictions on us that we can’t hope to meet, or to be comfortable with. Standards for “average” people are not our standards, so trying to force us to reach them isn’t kind, or in fact helpful. Taking away our comfort zones isn’t beneficial, since most autists put firm boundaries in place to save our emotional and physical nerves. We won’t become “more” or “reach our full potential” by striving to act like “everyone else.”

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There are still too many therapists whose goal is to make sure autistic children appear “less autistic.” Their aim is not to teach kids who struggle with empathy how to walk in another’s shoes; rather, it’s to repress or even remove the impulses that come naturally to us. We stim because our bodies don’t receive and process external information in the same way the bodies of neurotypicals do; we are not purposefully hoping to come off as “weird” or “fidgety.” We tend to avoid or stay away from groups of people, especially strangers, because they’re simply often too loud and confusing for us, not because we’re determined to dislike them and their ordinary-ness. We don’t share their interests or pursuits for a number of reasons, most of which are hardly rooted in disdain or pure selfishness. Many of us hold little to nothing against “them,” and all we ask is to be extended the same courtesy.

There’s an odd disconnect between how society views autism versus other disabilities or conditions. For example, people with physical limitations, as a result of injury or illness, seem to get much more respect than those of us on the spectrum. There have been specialized parking spaces and store entrances and more accessible homes for such circumstances for a while now. But autists are still, for the most part, expected to just walk into stores where the lights are too bright, to live in apartments where the neighbor’s music is too loud, to speak on the phone to a complete stranger to resolve a billing dispute, and just deal with it.

It means that living in a world we have to constantly conform to — in ways that put our health at risk — is difficult, degrading, even dangerous.

We don’t ask to have autism; we don’t choose to be on the spectrum. It seems we’re born there, which means the decision or assignment is utterly out of our prenatal hands. While many of us accept how we are, learn to manage the downsides of our condition, and often even find identity and solace in the way we give our all to our passions and keep trying to pinpoint the bright side of life, we’re also frequently told this is “settling” or “unacceptable.”

I still don’t understand why. And I’m not alone.

Ableism not only hurts autists; ableism shuts out other points of view to the ableists. They could be learning something from us, something that might make their world a lot bigger.

And if we didn’t feel so oppressed by ableism, if we felt welcomed to “come as you are,” could we gain as well?

Tulips

Autism, Encouragement

The Times Are Changing

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It’s not that I absolutely hate change. Change can be good, if there’s a situation or person or circumstance that’s really doing my head in; that altering or coming to an end will actually be beneficial, even if sometimes it doesn’t feel like it right away. But a major part of why autists don’t like change is because whenever something different or new happens, we can’t predict how it will make us feel — physically, and sensory-wise, and that can twist up our possibly already-challenged emotions. So, whenever I’m on the cusp of change — especially when I didn’t start the ball rolling for it — I get rather antsy.

We like our lives to be predictable, for all the aforementioned factors. Unfortunately, there’s also the danger of falling into an unproductive or unhealthy routine, just for the sake of keeping everything the same. And the past several weeks, I’ve found myself getting almost stuck in a pattern that meets basic needs, but doesn’t achieve certain goals. It can also be really intimidating for us to attempt going out of our comfort zones.

This past fall, after a long time of being a stay at home mom and focusing on writing, I started two new, outside-of-the-house, part-time jobs. And it was all good, and I have no regrets. But in the last couple of months, as the new-ness of an unfamiliar schedule became more common, and I realized I could go from thinking of myself in this “new” role to simply…being in these roles, as the dust of that settled, something else showed itself. I was having difficulty adjusting thinking of myself of being in my new roles as well as my old.

I hadn’t just stopped being a mother, or a writer, or a reader, overnight. On the surface, I knew all of that. Just because I had learned to be a library clerk didn’t mean I’d forgotten all my training in childhood development. Teaching ballet to adults for the first time didn’t invalidate or erase teaching it to children previously.

But somehow, the reality of my current situation and the intangibility of thoughts of the past weren’t clicking together.

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Then the other night, I was watching this horrifically boring documentary…and a really great story idea came to me. And I wanted to write it, badly, right then, at nine p.m., when I had work the next day. And all this week, as first one thing and then another and another have gotten in the way of my doing so, I palpably feel the ache of not writing enough.

This was also when it really sunk in, with the flair of an epiphany — whatever else I am, I am an artist. A creative and a creator. Even if I have to have a day job. Even if I get too busy or too tired to pen an entire novel in one sitting or choreograph a 15-minute piece, this doesn’t mean I won’t attempt it one day, very soon.

When you like your schedule to be predictable, reconciling the need for sporadic change — springing from the core of what makes you you — with a set routine can be pretty tricky. Having so many different ideas for projects means I won’t always be working on the same thing. That can be scary. That could put me off starting something new.

And that could stunt my creative growth — and in turn, my personal growth.

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So, I could either give in to the temptation to keep everything the same…stay in my comfort zone…and remain artistically frustrated…or step out and shake things up.

It’s not always easy. It comes with its own obstacles. I might get distracted, have to put aside or revise plans, or let go of smaller ideas. There will very probably be moments when I question the point of doing any of it at all.

But in the end, if I don’t go ahead…that would result in the worst torture ever.

So, I foresee…change.

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Autism, writing

An Autistic Author’s Struggles

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So, most of you are aware that I’m a self-published author, and an autistic everything. While having autism doesn’t automatically mean there are occupations I’m not cut out for, writing does present certain particular hurdles.

You can’t write because the faucet is dripping too loudly. Most people on the autism spectrum are extremely sensitive to external stimulation — such as noise, light, texture, taste, and smell. Just one of many examples I could come up with is a leaky faucet that results in torturing you right out of creating a sensible plot point or engaging dialogue. It may seem silly to some, but if you’re already having trouble figuring out a character’s witty next line, or what the code to the secret door should be, and that relentless drip-drip-drip feels like it’s leaking straight into your brain…

We tend to hear/see/feel life on a scale of 11. Everything is heightened to our senses. And it’s not something we can just learn to ignore or turn off. We can find coping mechanisms (sometimes we just have to, if we want to ever leave the house), but our bodies will simply never stop taking in physical information at these increased measures.

So we may need to wear noise-cancelling headphones, or carve out a time to write when no one else is around, or go somewhere like a library where people are encouraged to be quieter.

Unfortunately, exiting your familiar environment can throw off your regular method for keeping the creative juices flowing…

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You can’t write because you don’t know who may come through that door, or if this chair wobbles, or when a bat might land in the toilet.

In my case, being surrounded by a common atmosphere and objects — and all of the blessed predictability this entails — really helps me remember where the heck I was going with that scene or plot thread. Also, one’s stress is lessened by the freedom of being able to get up and go make a cup of tea whenever, and not worrying about someone taking your spot (which is a real concern in a cafe or library or bookstore). And the bat in the toilet may sound extreme and totally invented, but this actually happened in my local library a couple of weeks ago. If I’d been around during that incident, it would’ve meant not a single sentence got written for about a week.

And your productivity suddenly grinding to a halt is a valid concern…

You can get too easily distracted from what you were writing, or intending to write. Many authors admit they have ideas for about 14  new books all swirling around their heads at once. Whenever I’m in the middle of a project, I can guarantee a new and astoundingly brilliant idea will pop up from the ether…and proceed to take over my entire soul.

My mind and heart will immediately become consumed with the fervor for tackling this sudden notion. It may be utterly out of my usual genre, setting, or time period; it may require research that I really won’t do until much later (if ever!); it will definitely take me away from what I had been devoting myself to.

And then I will either abandon the new thing (after approximately 2 days to 2 weeks), or the new thing will turn into my usual thing, and the previous usual thing will…just sit there…until…the end of the world?

At the moment, I am on the third draft of Volume 4 of my fantasy series. Guess when I started it? June 2018. Guess when I last worked on it? May 2019. Yup…

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You may be kind of rubbish at time management. Being autistic often means we get caught up in dedicating large chunks of time to one certain task or endeavor. We’ll feel satisfied, after a 6-hour binge of reading up, that we now know everything there is to know about how 17th century castles were built. But our families or friends may be rather miffed that we didn’t do the errands/chores/socializing we had already promised to do in those 6 hours.

And we honestly were not being selfish or intentionally avoiding other responsibilities. Some of us are simply “time blind”: We just don’t realize how long it takes to accomplish an objective, or how quickly time is passing while we’re engrossed in whatever.

There are several ways to learn time management: set a timer, stick to a strict schedule, keep a daily planner or constant bullet lists and check items off as they’re completed. These strategies can work on your writing, too.

One of the benefits of self-publishing is that I set my own deadlines, and can always push it back if I need to. And “need” comes in a variety of shapes and sizes…

You just don’t feel like writing today. Or next month. Or anytime this year. I’ll confess: I am in awe of authors who sit down and just write the next chapter, get up in the morning and repeat…until the piece is simply finished. While my time management skills are pretty good, there will always be instances when the inner motivation to knuckle down on a project just doesn’t exist.

And this could be because:

  • I didn’t sleep well last night.
  • When I went to the grocery store this morning, someone gave me a weird look as I muttered my shopping list to myself.
  • The last time I tried sharing part of this WIP with others, I got laughed at — not in a good way.
  • I absolutely cannot imagine what would push my character forward when all I feel like doing is hiding under the covers with my cat.

Anyone who claims part of ASD is “not having feelings” is an idiot. We experience so much of life so strongly, and emotions are no exception. Tiny, unintended offenses committed by people who look down on us because of our stimming or the intellectual defects they imagine we have affect us deeply. Neurotypical individuals who show blatant shock at our “juvenile” preferences or “delayed” coping methods will make us second guess ourselves all day…or until the next decade.

The last time I tried sharing some of my writing with people who said they wanted to know more about my process, they were surprised I was writing fantasy, surprised even more that I was writing YA fantasy, and the combination seemed to lead directly to them no longer wanting my advice. That fact was not only heartbreaking and devastating, it meant that Volume 4 pretty much came to a dead stop. That was over a year ago, and…well, I admitted it’s just sitting in a drawer.

Which brings me to…

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You may feel like you’ll never measure up to “other” authors. This can be the biggest single hurdle. The imposter syndrome can hit anybody; but autists are already prone to feeling inferior, and if we hit resistance from people who professed interest in our work, until some little switch was flipped, it hurts. A lot. It can derail our entire purpose in writing to begin with.

There are moments when I have to give myself a pep talk. Concrete stats: 5 books published in two and a half years. Several positive, even glowing, reviews. A devoted Twitter tribe. Consistent traffic on the blog. Hundreds of comments of appreciation and encouragement.

Remembering that the naysayers can go stick it to the land of no sunshine feels like the tallest wall.

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Autism, reading

Review: The Boy Who Steals Houses (Arm Yourself, With Tissues and Cake)

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MAJOR WARNING: IMPENDING SPOILER ALERT. I will try not to blow the lid off the entire plot, but this time it will be a challenge. You cannot say I didn’t make a disclaimer.

And there is much flailing (and not always the good kind — sorry, everybody) to be done over CG Drews’ 2019 release, The Boy Who Steals Houses. It’s a contemporary novel focusing on the broken and battered teenage Sammy Lou, who eventually finds that his life, and his heart, can be mended.

There are complicated and sad factors at play here: Sammy and his older brother, Avery, have run away from a neglectful home, and they’re both barely scraping by, using minor theft and breaking and entering to stay off the streets. Is it the best choice? No. But have these boys been gnawed up and spit out by a world that refuses to accept Avery’s autism? Yes, they have.

This is at the core of the plot’s conflict: Avery is autistic, and because of it he was consistently ridiculed, punished, even physically beat by the adults who were supposed to be taking care of him and Sammy. Sammy got used to sticking up for his brother because no one else was. Sam was forced to grow up way too young, and nobody taught him the proper way to handle difficult situations.

Into all of this comes the De Lainey family, a widower with 7 children to raise. The older kids — twins Jack and Jeremy, Grady, Moxie — are all teenagers, and help out with the younger ones and their dad’s construction business. Through pure happenstance (no spoilers here, I promise), Sam winds up being mistaken as a friend of a De Lainey child, and so begins a beautiful, perfect summer he so, so desperately needed.

Most of Sam’s backstory is nothing but tissue fodder. (Hey, better I prepare you now.) It shows the worst side of adults — neglect, abuse, refusal to understand developmental disabilities — and while it’s hardly pleasant, it is important to let the world know there ARE autistic children treated this way. And because Drews is herself an Actually Autistic, she doesn’t just want people to know, she wants people to give a damn.

And after reading 340 pages about the Lou brothers, you will.

Under all this horrible mess that has become their lives, these boys are sweet and smart and so pure at heart, and you never doubt that rooting for them is the right way to go. Do they get it all right? No. Do they need some attitude adjustments? Yes. Is all of this possible? Absolutely.

See, the biggest problem for Sam and Avery is that they’re just kids, and they had THE WORST role models ON THE PLANET. When you’re neurodivergent, you don’t view the world the way most people do, and you won’t know the difference unless someone points it out to you. The true villain of this story is the Lou brothers’ Aunt Karen, who really should be in prison for child abuse and failure to provide proper care for a disabled minor. The saviors of the story are the De Laineys, because they LISTEN and HAVE HEARTS and DON’T CARE that Avery’s different.

The ending of this book — that will steal your heart and charm the pants off you, then break that cardiac organ, with a hammer, no less — is just, and makes sense, and there is SO MUCH LOVE AND HOPE. It’s also realistic — teenage runaways who steal things and get in trouble with schools and peers and others who are breaking worse laws than petty theft do have to face consequences for bad decisions. But is it totally unfair to Sammy and Avery Lou? No, it’s not.

And this is the most vital part of it all. While Drews includes the harder, fiercer, colder, make-you-curl-in-a-ball details of such circumstances, she doesn’t throw her boys to the wolves and leave them to be scattered by the wind. The De Laineys are there to pick up the pieces and reassemble them. There will be LIFE for the Lou brothers after the end of the last page.

Oh, and another massive reason you should read this book? My name is in the acknowledgements.

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Seriously, just go order it already. You can find it on Amazon, Book Depository (free shipping!), and bookstores in the UK and Australia!

 

 

 

Autism, blogging

Here’s Why I’m Proud to be Autistic

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Welcome to Autism Pride/Autism Acceptance Month! Let’s jump right in, with a list of reasons why I’m proud to be autistic:

My life is rarely boring. The way I look at and experience the world means that the beauty of nature and the comfort of a routine becomes just lovely things to take in. I don’t get bored or irritated by familiar things or places, I drink in the sunshine and the snow, the rain and the wind, flowers and trees and birdsong. Very simple pleasures bring me much joy. Re-reading favorite books, reruns of favorite TV shows, sharing the best movies with White Fang as he reaches the right age (and anticipating the same for Muffin one day), just makes my heart sing.

And because I have a vivid imagination, my daydreams often provide cheap entertainment. Thinking “outside the box” comes so naturally, I can create magic from the simplest things.

I know what I like. Whether it’s entertainment, academics, hobbies, occupations, cuisine, pets, or social events, I know what I like, and I’ve reached the point of not caring if others disagree. I make no apologies for my passions, and see no need to follow trends or keep up with “the popular kids.” I’m not sure whether you’d call it self-confidence or just stubborness, but there is something quite refreshing about not engaging in “fear of missing out” or giving in to the pressure to conform.

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Because I have specific interests, I take time to hone my strengths and skills. It’s how I made my way from completely unrecognized hobbyist writer to self-published author in about a year. While I’ll probably never be rich and famous, there are now books in my house, my local library, my friends’ houses, that I can point to and say — with absolute accuracy — “I wrote that!” And while national newspapers and most literary magazines have never heard of me, there are still a lot of people who have read and enjoyed my titles, and would be very happy for me to write more. Not at all bad for someone who couldn’t figure out how to format a 6×9 paperback manuscript in 2017.

I can sympathize with a wide range of people and animals. The marginalized, the underappreciated, those with trauma in their past, their present, even if I haven’t been in their particular circumstances, I get so many of the feelings that go along with discouragements and setbacks, heartaches and loss. While I’m very practical and believe action is always the wiser course, I’m highly unlikely to try to minimize or brush off depression or anxiety.

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Being part of a very special community. Finding other autistic adults through the power of social media has taken the phrase “These are my people!” to a whole new level. Never having met another autistic female until a couple of years ago — heck, not even knowing was on the spectrum most of my life — meant that I didn’t really “fit in” with any one group at school or work. Now that I know I’m not only “not the only one,” but also that I’m not the only autistic mother/self-employed/felt they were on their own, too, has made a HUGE difference in the way I view myself. I feel special, respected, understood. And I know that, regardless of what symptoms/lifestyle/education/career I do or don’t have in common with others on the spectrum, I still am, and accepted.

I may very well change the world one day. People who have made significant waves in history did so because they weren’t afraid to be different. This isn’t to say that everyone who changed the world for the better was neurodivergent or autistic; but their success started with refusing to accept a status quo, bravely taking on new ideas, and not letting the odds get them down. That’s a spirit I strongly relate to. It isn’t so much “when life gives you lemons…” as when the world says no, I say yes, and make my own way.

So, there we are for now! Tune in later this week for a promotional post on ASD author CG Drews’ newest release, an Own Voices novel on anxiety and autism entitled The Boy Who Steals Houses. It’s a book you won’t want to miss!

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Autism, blogging

Is Spring Here Yet?: Featuring What I May or May Not Be Doing with My Life After The Longest Winter Ever

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So, for those of you who live in places where it snows, can we all just agree, now, that this was the LONGEST WINTER EVER? It feels like the last 5 months in fact spanned at least 15. I definitely feel like I should’ve had a cameo in Game of Thrones. Usually I embrace living in a region where all 4 seasons are in concrete representation…but not this go-round.

Anyway, I don’t think it helps one sliver that this rollercoaster of a winter finished for us with a strong bout of sickness that we’re still trying to kick. There’s been multiple days — sometimes in a row — of more rest than doing anything else, which has led to falling behind on other stuff (welcome to my writing goals getting completely tossed out the window), and domino-effect-issues like the contents of the freezer reaching uninspiring levels. Poor Muffin and White Fang are still on the road to recovery, while the cat seems largely unscathed (yay), and my husband and I are finally turning the corner.

By some miracle, I’ve still been able to do at least a little editing on my current projects, and the distant dream of having a book ready to release in the next couple of months is still alive! I’m not going to be anywhere near as bold as to slap an actual date down, but it may still happen, and I am awesome with that!

Otherwise…

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Interestingly, I haven’t even been reading very much. I did complete a re-read of books 1-3 in Kyle Robert Shultz’s delightful Beaumont and Beasley series, mostly before he releases a million new novels and I realize I forgot everything that took place previously. (Ahem. My memory generally is much better than that, but, hey, it’s been a hell of a time.)

I have been able to make it to recent book club meetings at my local library, which is important for me as a self-published author, because I don’t have a highly-paid marketing team behind my titles, so I need all the exposure I can get. And joining in community events (and they are small, as we live in a rural area between the big cities) means I have the chance to share my street cred, which increases that, and it all keeps rolling merrily along.

And can I just say…the promotion part of indie authorship is much harder than a lot of folks realize. Yesterday I noticed a Tweet that mentioned since Amazon changed its review policies, it’s harder for readers of indie authors to leave reviews supporting our work. This becomes Reason # 4736 I don’t use Amazon for self-publishing. If anyone who has loved my books would like to leave a review on the new Barnes and Noble links for my re-releases, please, feel free! It only takes a B&N account (which costs nothing to have), and a few minutes of your time, and when you do something like this for your favorite indies, it really makes our day!

(Wow, I worked that plug in pretty seamlessly…)

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In non-writing-or-reading news…

Hmm, there’s really not much. I think by now everyone knows (or may have come across hints) that personally February was rather brutal, and a lot of March was picking up the pieces of that. For privacy reasons, I’m not sharing certain details with the entire world, but suffice it to say, it was hell in a handbasket. Not even kidding.

Now, the positives from this: At the moment, there has been some significant progress made, and while there are still a few loose threads, we are, praise the Lord, a far cry from where we were. In the midst of all these appointments and meetings and schedule changes and costs that weren’t there before, we have received so much heartfelt emotional, social media, and even financial support that we remain eternally grateful for. I would be flatout lying if I claimed it hasn’t gone a long way towards helping me make it through. Waking up every morning terrified of what the day would bring was an absolutely horrible feeling. Knowing there are people who have my back, even in the darkest moments, gave me that little push to keep going.

So, what’s coming up next?…

April is going to be a month featuring autism, and not much else. It’s Autism Acceptance/Autism Pride Month, as typically it’s been a month where organizations pushing for a cure to neurological and developmental disorders try to get people to feel sorry for us, and we’re just not tracking with that anymore. So the goal of the online Actually Autistic community is to reclaim this month, to share what we love about how we are, and to push for people to love us, to hell with “awareness.” Especially since many people who are aware of autism still judge and condemn us, which makes our platform for tolerance nearly impossible. Hence shifting the focus of the campaign, and this is an endeavor I am more than happy to get behind.

I will be blogging only about once or twice a week, though, in April, in the interest of getting more writing and editing done, and I can. Not. Even. with the idea of May showing its face. So if you notice I’m not around as much, it’s simply due to expending my energies elsewhere. Forsooth!

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Autism, community

Get Ready For Autism Pride Month

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I really hope you’re ready for a whole lot of autism.

April is Autism Awareness Month in many English-speaking countries, and many of us #ActuallyAutistic folks have an issue with the way we’re often portrayed during this time period. “Autism awareness” all too frequently translates to “being aware of the affliction of autism.” When we don’t consider ourselves afflicted, generally. Some of us suffer with physical difficulties, such as seizures or food allergies or other medical conditions, that happen to go along with our being on the spectrum. But just having autism is NOT what creates our “affliction.”

To us, we just ARE how we are. Our normal IS having autism. We don’t know anything different. Some of us don’t care for that status quo, and some of us would change it. But most of us don’t see the need. And all we want is to be ACCEPTED for taking that point of view.

We don’t need to conform, we don’t need to become just like everyone else. We can bring so much value to this messed up world simply by being ourselves.

There’s a push in the #ActuallyAutistic community this spring to TAKE BACK the month devoted to “raising awareness” about us. We’re going to call it Autism Pride.

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So, throughout April 2019, every post I make on this blog will be dedicated to something about autism. Once or twice a week, I’ll pick a topic and share all the positives and negatives, all the “it is what it is” of the subject.

The prevailing theme for all of this WILL be taking pride in being autistic — no matter what the rest of the world says. No matter how hard it gets sometimes. No matter how much we do struggle.

It took me most of my life to figure out I’m on the spectrum. And when the realization finally did come, it was AMAZING. All the human behavior and perspectives I never could understand, now I got WHY I didn’t grasp it. The environments and hobbies that made me squirm because of the noise and heat and too many other people all made sense. I stopped feeling the push to apologize for wanting to be introverted, for not wanting to look at other faces the entire time I was talking, for not joining groups or having a very small social circle. I no longer cared if I wore makeup, high heels, or dresses more than twice a year. I embraced sticking to my comfort zone, at last comprehending that all my boundaries had developed from a very real physical reason of protecting my extremely sensitive nerves — not at all from shyness or stubborness or a refusal to adjust. wasn’t what required adjusting.

Knowing that, for the first time, finally, felt LIBERATING.

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For years, I’ve been speaking up on behalf of my autistic son, fighting for his acceptance in a world that would rather change him before tolerating him. Now I’m also fighting for myself, and for the next generation of ASD girls, so that they can be heard, and not have to spend their lives doubting, fearing, aching.

Neurodivergence is the civil rights platform most of us never thought we’d have the opportunity to stand on. Now that we are, and on the cusp of turning the corner, we can’t give up. We’ve been abused and mistreated for decades, and at last that’s being exposed and shamed. It’s not too late for our children to have a great life, their strengths applauded, discrimination scaled back.

Who’s with me?

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Autism

On The Prospects for an Autistic Adult

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So, this may not be a fun post, but it is a necessary discussion. And although it doesn’t apply to everyone, it’s something that more people need to be aware of. And it’s been weighing heavily on my mind lately, for a variety of reasons.

We’ve all heard the advice given to teenagers or young adults about to enter the “real world” — do well in school, go to college or get vocational training, gain experience in your chosen field through volunteering or an internship, learn how to submit a killer resume and ace the interviewing process. Then you’ll find a job to get your foot in the door and begin building your career.

Simple. Right? Not when you’re autistic.

When you’re autistic, you do all of these things…and won’t automatically succeed. We have what’s known as “an invisible disability,” meaning that we look completely “normal” on paper. But when we’re sitting in front of someone, most likely we won’t be able to help stimming, or we’ll really struggle to keep eye contact, or we’ll forget the perfect word halfway through a sentence, and need a few seconds of waving our hands around to recover it. Although none of these things are a criminal offense, they really turn off interviewers. Somehow we’re seen as potential screwups, not potential employees who could still do the job with our disability.

There’s something about us that makes people uncomfortable — mostly, just the fact that we’re different. And a lot of “average” people have issues with anything they don’t recognize, can’t quantify, or don’t have a slot for.

This has happened to me so many times I stopped keeping track.

I stopped working outside of home in 2014 after Muffin was born. In the past four years, I’ve submitted numerous applications and had several interviews. Here’s how many jobs I’ve been offered: Zero.

There were occasions when I did not pursue the next step of the interview process, though, as I realized early on the position or business in question would not be able to support any accommodations I’d request. I’ve come to a point in my life where I know my limitations, and I won’t pretend otherwise. I don’t believe I can work more than 30 hours a week, know I can’t commute more than 20 minutes one way, can’t deal with tough parking situations, or loud, crowded environments on a regular basis. And yet, in spite of these factors obviously creating difficulties for my day-to-day, the chances of me actually securing a partial disability stipend are slim to none. The government will say that since there still are jobs I can do, that means I won’t qualify.

Well, how am I going to get a job that no one offers me?

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I spent a lot of money returning to college to finally obtain a degree…which I now can’t use. I accumulated debts that I can’t pay off. My references are quickly becoming outdated. I’ve explained my situation about 17 times to the people who handle the student loans, the credit checks, and the job training places — that I’m more than qualified to work part-time with small children, but because I have an intellectual disability nobody lets me through the door, or won’t let me have reduced hours or a low-key environment once they do — and I get no sympathy, no advocacy, no practical solutions. Most of the suggestions I receive are pointless — I can’t drive 45 minutes one way to go to a center that will re-train me in masking (such a commute would cause panic attacks, and masking will only result in a breakdown later on from building and then ignoring anxiety). I can’t refinance to achieve a lower interest rate because I have no numbers with which to juggle terms and conditions. And I am not going to finish a Bachelor’s degree, because that will simply mean more debt that will remain unpaid later on when even more mainstream positions — like that of a kindergarten teacher — won’t hire me.

When you think about it, it’s so ridiculous — if society is gearing towards including all sorts of people, such as those with intellectual disabilities, then why wouldn’t all sorts of businesses hire them to carry out all sorts of tasks? But the fact remains: Anything outside of the norm is viewed with extreme skepticism and prejudice.

And a “place” for us is developed within the constraints of what the rest of our culture is comfortable with letting us have.

But that place often does not benefit us.

Before I had Muffin, I had basically become a professional floater. A floater in childcare is someone who fills in for whatever staff can’t be present that day, whether it be with infants, toddlers, preschoolers, the elementary age afterschool, even the kitchen and cleaners. Most people don’t like switching their duties that frequently; they prefer to be in the same space every day, doing the same thing. For me, that’d equal soul-killing boredom. I loved getting to work with such a range of ages and developmental levels, help the kids in everything from counting the blocks to folding their nap blanket to trying a new food. And most of my colleagues respected my versatility — I could breeze into any classroom and pick up the routine within minutes, which kept their day running smoothly, and anybody who works with kids knows this means sanity is maintained.

But for some reason, eventually people will start asking, “Don’t you want to move up?”

Actually, no, I don’t. This position fits my lifestyle, and provides enough money for what I put into it, and I’m good at it. Why does this bother you?

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So now here I am, a perpetual stay at home parent, and not completely by my own choice. One could say that the clear solution would be to go into business for myself — and believe me, I’ve considered it — but how does one do that when she has no money to rent an office or studio, and no financial means to secure a loan or startup costs? How do you get customers through the door when you can’t afford advertising, have very limited networks, and a disability that prevents you from holding massive fundraisers or events? How do you get around the issue of some people simply refusing your services because you’re not like them?

None of these questions have easy answers yet, either.

So, in the face of all the hardships and uncertainty, the biggest inquiry becomes: Do we give in, or do we push on?

Pushing on can be very, very tiring.

Giving in may result in consequences we didn’t foresee, or don’t care for.

As much as there are days I feel I cannot go forward, I refuse to give up.

So I’ll keep trying.

And probably regressing.

And with any blessings, one day, I’ll make it.

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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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