Autism, health

Why Ableism Hurts Everybody

Desert

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?

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health, reading

A Stiefvater Appreciation Post

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“What’s this?!” I hear you all asking. “A blog post — after the start of NaNo?!”

Yes. I feel pretty good about where my word count is, and where it is likely to be by bedtime tonight. And this is something I need to share.

Number one: All this art was drawn by Ms. Stiefvater herself. She is an amazing artist, not just a unique and talented author. I like to use photographs of her originals when singing her praises, and giving credit where credit is absolutely due.

Number two (but really also part of Number one and what spurred this post): A few weeks ago, I read an essay via a link on Maggie Stiefvater’s personal Twitter account that got me thinking. For very good reason. It was a detailed, private journey of how she spent years living with an undiagnosed, serious illness. There’s no way the decision to put all of that into text and release it to the internet was made quickly. She was brave, to share the intimate moments — how devastating her symptoms were, how many doctors brushed her off, how some of her fans panned books she’d struggled to complete while terribly sick.

Number three: Not only was I in intense admiration of Ms. Stiefvater’s courage, but I was also struck (how could I not be??) by the flat-out awfulness she went through before receiving proper treatment (she has an adrenal gland defiency). And I realized something personally — I was indeed one of those fans who was unfairly judging the books released between 2014 and 2017. I remembered, sharply, almost painfully now, acquiring them from the library and reading them, and thinking that they were okay, maybe even pretty good, but that they didn’t feel “like a Maggie Stiefvater novel.”

And after finding out why I got this impression, I felt guilty.

The sticky truth about the relationship between authors and readers is this: Sometimes, your favorite author will write something you just don’t care much for. It could be for a myriad of reasons. Maybe the subject matter just isn’t your jive; or you and the characters didn’t click all the way. It is all right not to be dancing down the street about every new publication.

However. Having said that, I’m going to stress the importance of distinguishing between: This one just didn’t do it for me, and What the hell happened to this author?

As a reader, I have done it myself. Including with The Raven Cycle and All the Crooked Saints. And now that I know she was hoping to avoid literally dying while writing some of those titles, I do feel ashamed.

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A relevant aside:

I didn’t know until pretty much everybody else did that Terry Pratchett had Alzheimers’ disease. Once I found this out, I wanted to avoid whatever books he published in the last few years of his life, for fear of them not resonating in the same way as the early Discworld canon that changed my life. Yes, this is the truth. Terry Pratchett was an author that made me want to write again, during a dry spell after becoming a first-time parent and moving abroad. To have that shattered, to have that robbed of me by a stupid, invading illness, would have been utter rubbish.

“Hey, moth, how do you think he felt? He was the one with the life-altering circumstances and crappy diagnosis that stole his words.”

No, you don’t have to say that now. Yes, I caught on to that, a while back.

I have read a few of the final Discworld books, suspending judgement and disdain. I was able to pick out the golden nuggets of the-heart-of-Pratchett, still within the paragraphs his co-writer must have worked hard on, so that the stories would at least somewhat click with the fans. And it does feel that they stayed true to the characters, and the general premise of the world.

The last title in the series, The Shepherd’s Crown, includes a scene that made me cry for about 3 hours straight. It killed off a major character, and did so in a way that made it clear: this was a moment of Sir Terry coming to grips with his own impending mortality.

And you can tell, by the style, by how it made you feel in your soul, that the writing was all him.

After reading some of Ms. Stiefvater’s live tweets regarding The Raven Cycle, leading up to the release of her next trilogy, it occured to me — I had given this series an unfair slam. I’d had no idea what she was going through; and despite the saying “ignorance is bliss,” ignorance really just makes for some embarrassing gaffs.

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At the moment, I am re-reading The Scorpio Races. When I finish, I’ll be starting afresh on All the Crooked Saints and The Raven Cycle. Now the moments that didn’t quite strike me or seem “Stiefvater-y” will make sense. It will feel like reading these books for the first time, because my preconceptions have been stripped away, and my eyes are fresh.

I don’t want to close off my heart to an author that had it so completely after The Wolves of Mercy Falls. The idea of totally missing what so many others adore about “her other series” unsettles me.

To a point, is it all a subjective matter of taste? Well, yes. And I shouldn’t feel the need to apologize for my own taste.

But not having the whole story before I make a final determination is an action that goes against the very grain of who I am.

In the end, I may not like the ravens and dead Welsh king more than the temperature-controlled werewolves and water horses. The owls and confused saints and lost pilgrims in the desert may still not be somewhere I revisit frequently. But I will know the whole truth of it all, and my conscience can be clear.

And then, I’ll be ready to proceed to Call Down the Hawk, the first in a new trilogy, spinning off from, but not based on, The Raven Cycle. And I may be very excited about it. Even if I’m not thrilled, I won’t feel this awkward distance between me and, quite honestly, one of my favorite authors.

I’ll want to read it — simply because she wrote it.

That’s the best every fan — and every artist — can hope for.

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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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Encouragement, health

In Which I Become An Episode of a Medical Drama

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But it was an episode that ended with Patrick Dempsey coming out to the waiting room to announce all was well.

Okay, not really Patrick Dempsey (but wouldn’t that have been cool if Derek Shepherd of Grey’s Anatomy had been my surgeon? which wouldn’t have happened, though, as he was a neurosurgeon and I had a GYN issue…anyway…)

But, yes, everything went well. Sure enough, there is nothing wrong with my stomach or digestive system. All the pain was being caused by a blockage in my uterus, which was pressing against other organs and creating pain.

Today I feel a lot better than I have in months. Literal months. No bloating, no indigestion. Yes, I am sore from the incision, and my throat hurts from the breathing tube, and my muscles are stiff and achy after the anesthesia wore off (which they warned me would happen).

I’ve been able to keep down some soup and crackers and tea, and I’m still tired, but I have a flat stomach for the first time in easily six months, and my side doesn’t hurt for the first time in nearly a year.

The official problem is endometriosis, which is a bit tricky, but treatable. Most likely, there will be further treatments, maybe another operation in the future if the initial treatments don’t take. But for the moment, I am certainly healthier than I was.

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I made it through the worst part so far; recovery will be a walk in the park compared to all the suffering of the last many weeks. Last night I could actually lie in bed in almost any position I wanted and be comfortable. This is a huge stride in the right direction.

Today is a snow day here, as we received the latest blast of snow and ice. Nothing really serious for our area, which is great. Muffin is at grandma and grandpa’s, probably playing in the snow. White Fang is bingeing library DVDs.

Outside it’s white and beautiful and cold, and quiet.

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I still have a ways to go. There are things that may happen in the future that will still create problems. Hopefully not, but I remain realistic. Though optimistic, as I now have a concrete reason for what was going on, and since it’s finally been isolated, and there are options for treatment. I no longer have to wait and wonder and suffer.

The anesthesia took effect pretty quickly, so I remember absolutely nothing after being wheeled through the surgical registration area. I have to say, I almost wanted to overhear something about the conversation between the doctors and nurses during the procedure. Or at least experience some cool trippy dreams while being under.

(Kidding, by the way. Mostly. Don’t do drugs, kids.)

Here’s what I do remember before I woke up: I was with the Doctor (10, for those of you wondering), and he had this box, and it had something important in it, and we were running up a mountain, towards where the TARDIS was parked. Hey, I’ll take that, too.

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For all of you who have been monitoring my progress and keeping me in your prayers, thank you. Don’t sign off just yet, however, as I have a feeling we’re not quite to the end of this.

But today I feel like I’m at the start of a new beginning, and it’s been a long time coming.

And I am grateful.

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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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blogging, community, family, health, Mental Health, Parenting, The Invisible Moth

Life With A Toddler…

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(Originally posted in February 2016.)

“Are we out of the woods, are we out of the woods, are we out of the woods yet? Are we in the clear, are we in the clear, are we in the clear yet?” — Taylor Swift, “Out of the Woods”

Why are there always more crumbs in the same exact spot I swear I finished sweeping five minutes ago?

That was the longest snack in the history of mankind.

Okay, wash the tray, wash the dishes, wipe down the bib, the floor, the chairs… Put his clothes in the hamper… “Don’t throw that!”

Get a load of laundry started…put him behind the gate while I run to the basement (yes, run, run for your life)… “Stop kicking that door!”

Wake White Fang up…empty the dishwasher…keep one eye on the TV for the local weather forecast… Where’s my coffee? Oh, in the microwave, of course.

Cooing, babbling, giggling, and battery-operated toys singing nursery rhymes. Yay. Sigh.

Wow, I want cake. I don’t care that it’s 7:30 in the morning. How else do you expect me to get through the day?

He’d better take a marathon nap later.

Send hubby off to work…finish the vacuuming…thank heavens, Thomas and Friends is on.

Crying. Even Elmo isn’t cutting it. He’s spilled pureed fruit all down his clothes. He’s yawning and rubbing his eyes. Deep breath.

Diaper change. Fresh clothes (again). Time for bed.

More crying. Ignore it. Make more coffee. Open up blog. Wahhh, wahhh… Ignoring…

Yay, new posts to read!

It’s quiet back there. Ahhh.

Tidy kitchen. Put laundry in dryer. Dance around living room to Taylor Swift. Work on blog.

Wow, he’s been sleeping a long time. Some kind of miracle… But, I’ll just go check…

Oh, God, look at that sweet face. Those tangled curls, those little fingers, closed around the edges of the blanket Grandma made, the blanket I have to sneak off to the washer every now and then, to get rid of the bits of applesauce and yesterday’s crackers.

He’s sleeping peacefully. Yay.

But he’s waking up soon, right? So I can pick him up and hold him tight, feel that soft cheek pressed to mine?

‘”Are we out of the woods yet, are we out of the woods yet, are we out of the woods yet? Are we in the clear yet, are we in the clear yet, are we in the clear yet? Good.”