Deborah Markus's Blog, page 3

Baby Steps

Me: (reading I Think I Might Be Autistic)

Me: (at a glacial pace)

Me: (seriously people it’s 111 pages)

Me: (kinda sad it’s taking me this long to finish is all I’m saying)

Me: (anyway)

Book: Do you repeat sounds such as animal sounds, grunts, growls or hums?

Me: wait what?

Me: whoa

Me: okay that’s the first question that’s seemed really weird to me

Me: like I’m not trying to be judgey or anything

Me: I’m just saying this sounds a little

Me: how should I put it

Me: troubling?

Me: or maybe I’m just startled that there’s finally an autism characteristic I don’t have

Me: seriously this quiz has gone on for almost thirty pages and I don’t think I’ve said a firm “no” yet

Me: To be fair, let’s remember what this book is called.

Me: Anyway.

Me: “No.”

Me: I seriously cannot relate to this question at all.

Me: All the others were either, let’s see

Me: Yes

Me: YES

Me: FINALLY SOMEONE UNDERSTANDS ME

Me: or “kind of”

Me: But just this once, no.

Me: I do not in fact repeat sounds.

Me: (later same day)

Me: (listening to comedy/sci-fi podcast Mission to Zyxx)

Me: (there’s a character who’s a baby)

Me: (but they’re a species that grows to full adult size almost immediately after being born)

Me: (so the character is voiced by real-life babies of the cast and crew)

Me: (I love that)

Me: (dang I love baby babble)

Me: (it’s so CUTE)

Me: (baby voices are just the best)

Me: (they grab me in a way I can’t explain)

Me: (seriously I wish they gave this baby more lines)

Baby Hoha: Baababablabababadababa

Me: Baababablabababadababa

Me: [image error]

The Really Hard Job

A representative sampling of books in boxes, books on shelves, and my crap photography skills.

Me: Now that Boo has a place of their own, I’m taking the opportunity to go through our apartment, clear out things we don’t need anymore, and enjoy the new space. Last month, I culled about five hundred books from our shelves and boxed them up. Thank goodness I don’t have to lug them anywhere. I found a used bookstore that picks up donations as long as there are at least four boxes – that way, it’s worth their while to make the drive. I just had to fill out an online form and then they called me to make the appointment to come by.

My friends: You got rid of FIVE HUNDRED books?

The entire autistic population: You made arrangements to have boxes picked up???

Living In A Popcorn World

Me (holding my forearm up) (almost breaking my spouse’s nose with my elbow in the process): This doesn’t look scary, does it?

Spouse: um

Me: I banged it really hard about twenty minutes ago and it still hurts. There’s not much of a mark or anything. I just want to make sure I’m not ignoring something important. 

Spouse: No, it looks fine. Are you okay?

Me: yeah sure

Spouse: What happened?

Me: um I banged my arm

Me: again

Me: I mean to be fair we’ve only lived in this same apartment for gosh what is it now

Me: oh yeah THIRTY YEARS 

Me: and I mean if I’m going to pull a stunt like putting a cup away in a cupboard, I should expect trouble.

Spouse: I’ve been meaning to talk to you about your shenanigans.

Me: Seriously – I’m so tired of this! 

Me: I want to be able to do normal things without kerblamming into every single hard surface in the whole entire world! 

Spouse: That is a lot to keep track of.

Me: Other people get to do the dishes without registering on the Richter scale!

Me: And go for jogs without almost breaking their arms, which never stops being humiliating in case you wanted to know.

Me: Nice normal neurotypicals get to live in a world where the gravity is always the same strength. Once they finish growing physically, they’re fine.

Me: Meanwhile, I get to spend every day feeling like I live in a popcorn popper.

Me: …that made it sound cute, didn’t it?

Spouse: To be fair, everybody loves popcorn.

Which is true, or as close to true as any “everybody likes this” statement ever gets to be. 

What’s also true is that while there are aspects of autism that I appreciate, enhanced clumsiness isn’t one of them.

The first time I started to read Cynthia Kim’s I Think I Might Be Autistic, I didn’t get far. But I did get to the chapter where she mentions a “set of characteristics to consider – traits you won’t find in diagnostic criteria but you will frequently hear autistic people talk about experiencing.” One of those traits is “impaired gross motor coordination: clumsiness at sports, bumping into stationary objects, etc.”

I don’t know why it was such a relief to have someone tell me, “Listen: a lot of autistic people are uncoordinated.” In a certain sense, it’s no different from telling myself, “Guess what: apparently, you’re a klutz.” Either way, I’m doing a lot of falling down for no good reason and bumping into stationary objects with extreme prejudice.

But at least it’s not just me.

Before, it felt like a personal failing. Now, it feels like a simple matter of fact. 

I’m part of a group, and my group struggles with gross motor coordination.

I recently joined some online support groups for adult autistics. I remember knowing one of them would be a good fit for me when the first post I saw read, “Does anyone else find themselves being even clumsier than usual at certain points in their cycle?”

Clumsier than usual. 

I’d found my people at last.

That’s made it easier for me to be pragmatic. I’m trying to slow down a bit, whether I’m going for a jog or doing household chores. That’s helped some in when it comes to minor but deeply painful injuries.

I’m also trying not to get so worked up emotionally when I do fall down go boom, or add another bruise to my forearm collection. There’s no point in getting down on myself. This is just what my group does.

Unfortunately, getting all worked up about what should be minor incidents is also something my group excels at. So I’m fighting an uphill battle there.

Yesterday, when I earned that new sore spot, I went ahead and let myself wallow a bit. I gloomily pondered the fact that “grace” has multiple meanings in English. It isn’t just a quality, a characteristic some people have. It’s a blessing. It’s even a virtue name, right up there with Mercy and Charity. Which also means it’s associated with femininity. Which I shouldn’t care so much about failing at, but I grew up in the ’70s and that’s hard to just walk away from. Especially for someone who trips a lot.

I let myself roll around in that nonsense for a few minutes, and then I went and griped at my long-suffering spouse. And then we went to see a silly movie in an actual movie theatre, because we’re vaccinated and the world is opening up a bit and there’s a lot for me to be thankful for and I should stop getting so worked up about what a klutz I am.

I splurged on an extra-large Coke Zero and smiled at the stranger next to me and enjoyed the scent of fresh-popped popcorn. Who doesn’t love that?

Especially when you can just sit, secure in the knowledge that even The Human Popcorn Kernel can’t trip and fall when she’s safely ensconced in a big floofy theatre seat.

Just a Little One

I was proofreading my most recent post when something happened that made it almost impossible for me to finish.

Don’t worry: everything’s fine. No earthquake; no broken pipes (I manage a building); no sudden storm of rocks falling from a blue sky (I read a lot of weird fiction). If you’re neurotypical and you’d been sitting in the same room with me, you probably wouldn’t have noticed anything amiss. Because in a way, nothing was.

I took a deep breath, tried to remember everything that regular meditation has been teaching me about focus, and managed to finish proofreading and posting.

Then – finally! – I was able to get up and follow bodily where my mind had been the whole time.

In terms of being able to function in what’s usually considered a normal environment, autistic people often struggle with a double-whammy disadvantage. We tend to get engaged by what are often considered details, and we don’t do well when it comes to ambient noise.

That first one doesn’t have to be a bad thing. I’ve worked as a professional proofreader (and a darned good one) because I love how words are spelled. Catching an error can feel like a moral triumph, the righting of a great wrong. I am making the world a more beautiful place, one “i before e except when it isn’t” at a time.

There’s not much upside when it comes to the noise thing, though. If you’re autistic, odds are good that you’re living in a loud loud loud loud world. It’s no fun. It’s sometimes painful. And sometimes it makes it nearly impossible to cope, let alone pass for a nice normal person.

I felt relieved and a little overwhelmed when, in the course of reading Cynthia Kim’s I Think I Might Be Autistic, I got to the part where she asked readers if they have “atypical sensory experiences.” Do I have unusually sensitive hearing? Do I often hear sounds that other people don’t even notice? Do I ever.

Her question about whether I had trouble conversing in the presence of background noise almost brought me to tears. It reminded me of all the times people have been frustrated by my “paying too much attention” to noise. It can be difficult to make it clear I’m not choosing to be overwhelmed by random sounds when I’d really like to just have a normal back-and-forth conversation.

Here’s how I had to explain it once to someone who truly thought that I just wasn’t trying hard enough to focus on what they were saying, and who suggested that I “just ignore” the noises in question:

“I want you to imagine that we’re sitting and talking just like we are now. And now, while I’m talking to you and you’re listening to me, I want you to imagine that someone just came up to you and started touching you on the shoulder. And then on your arm. And now a few little taps on your back. None of this is hard enough to be painful. The person doesn’t mean you any harm – let’s say it’s someone you know, someone who cares about you and would never hurt you. You’re not at any risk. They’re just touching you softly. Gentle taps. A few on your forearm now. One on the other shoulder. Doesn’t hurt. Doesn’t stop, either. And it’s pretty random. You don’t know where they’re going to tap you next.

“Meanwhile, I’m telling you about something that happened to me today – something that isn’t life-threatening or even life-changing, but still it’s pretty important to me. I want to share it with you. I thought you cared about my life. You do care about my life. You want to hear about it. You’re trying to listen. It’s not as if you can’t hear over all that tapping on your arm. Your shoulder. A little one on your elbow. Don’t worry – it’s not hard enough to hurt. On your wrist now. Tap, tap, tap. Tap.

“How are you doing following what I’m saying? Is this a fun conversation for you?”

When I’m trying to follow a conversation – or write one, or proofread one in the case of last week’s blog post – it can be beyond hard to “just ignore” ambient noise. 

I do what I can. I put on instrumental music I’m familiar with – hooray for the autistic tendency to listen to the same albums over and over and over again. I own and use multiple white noise machines. I meditate in an effort to build up “tune it out” muscles I’m not always convinced I have.

None of this helps when a noise is a combination of piercing and important to me. Which this one was.

It was a tiny whistling sound. Just a little one. But it’s one I haven’t heard in two years.

I live in an apartment building with a small balcony on one side and a big open courtyard on the other, filled with flowering plants. We get a lot of birds – especially now that I offer excellent quality birdseed. (The less expensive stuff leaves too many shells around for my already long-suffering neighbors to deal with.)

My apartment is on the second floor, so the birds feel safe on my balcony or poking around on the deck outside my front door. This gives me the opportunity to observe them at what’s ground-level for me but elevated and protected for them. 

A few years ago, I noticed the kind of detail I cherish.

Mourning doves are known for their signature wistful cooing sound. However, mourning doves who are big enough to be out of the nest but young enough to still be somewhat dependent on their parents have a signature sound of their own.

It isn’t a coo. It’s a whistle.

I’ve noticed this about the songbirds we attract, too. They each have a young adult call all their own – a recognizably “birdy” sound, to be sure, but one that’s as distinct from a mature bird’s utterance as a human baby’s cry is from a grown person’s conversation.

So far as I can tell, this makes good evolutionary sense. Young birds are often as big as their parents. But even when they’re out of the nest, they’re far from mature. In terms of taking care of themselves, they’re much less capable than a human teenager would be under similar circumstances.

Having a call that sounds, to another bird of the species, like a human toddler saying “mama?” just makes sense. It lets everyone in the community know that this little one needs some care, and that it certainly isn’t old enough to be dating yet.

Because birds only have babies at certain times of the year, if you don’t hear the youngster-sounds in the summer, you’re not going to get to at all. 

Which is no big loss for plenty of people, but I was really disappointed last summer not to get to hear that special sound the one time of year that a dove whistles rather than cooing.

If any humans had been present when I heard that thin wistful sound a few days ago, I probably wouldn’t have even triedto keep up my end of the conversation. I would have explained myself as best I could while I was tiptoeing over to the front door and confirming that – yes! There it was! A mourning dove so young, its underside was still baby-fuzz rather than full-grown feathers.

I had two reasons to be happy. 

The first: I was able to get some videos to capture that adorable sound. Those will keep me going if I miss out next year, too.

I was also very proud to have been able to finish the task at hand with that kind of distraction. To a neurotypical – even a bird-loving one – it might not have been much. It might not have been audible.

To me, it was like trying to proofread with a human baby crying right next to me.

I was almost through with my work when I first started hearing that sound, which is probably why I was able to complete what I was doing before jumping up and focusing on something really important.

Neurotypical or not, there are some sounds everyone should listen to.

The HORROR

Spouse: Hi, honey!

Me: YEAH HEY WHAT’S UP OR WHATEVER

Spouse: …what happened this time?

Me: NOTHING’S WRONG EVERYTHING’S GREAT WHY ARE YOU EVEN ASKING

Spouse: [image error]

Me: okay okay yeah somebody was stupid today

Spouse: I’m shocked! 

Me: About autism.

Spouse: Shocked, I say!

Me: but like REALLY stupid

Spouse: I’m running out of “shocked” here.

Me: okay so someone in one of my support groups posted about something that someone in one of her other support groups said.

Spouse: …uh…

Me: and it was about how tired she was of her autistic stepkid.

Spouse: Hoo, boy

Me: And the thing is, she could have vented in a way that really would have been okay.

Me: She could have said, “I need more time to myself because of my own neurovariance.”

Me: (She’s not autistic. She’s not neurotypical, either.)

Spouse: (Ah.)

Me: She could have said, “I know it’s awful to sound like the original evil stepmother, but it’s hard to do the work of parenting when you weren’t there from the beginning.”

Me: “Taking care of a child is exhausting, and I realize that sometimes I get to the point where anything this kid says is going to annoy me.”

Me: That would have been FINE!

Me: I’m a parent! I get it!

Me: It’s not always fun!

Me: You need somewhere safe to vent!

Me: You know what you don’t need to do?

Spouse: Um…

Me: You don’t need to bitch about things that are an integral part of parenting and then blame it all on autism!

Spouse: Sure.

Me (peers at phone): So, like, let’s see.

Me: She gets “tired of having to answer simple questions.”

Me: And she blames that on this kid being autistic!!!

Me: Seriously?

Me: First of all: if you don’t want to have to answer simple questions all day long, don’t get near ANY children! 

Spouse: And don’t get a job in tech support.

Me: Right?

Me: And second of all: hmm wow okay so I guess she’d rather have a kid who asks really, really complicated questions?

Me: Can anyone convince me that this horror-show of a human wouldn’t be bitching about the fact that her autistic stepkid keeps asking her about, I don’t know, mitochondrial syndrome?

Spouse (reminiscently): I used to get obsessed with a subject, follow my mom around telling her everything I’d learned, and then say to her –

Me: “Now ask me questions.” 

Spouse: I already told you about that, huh?

Me: No. She did.

Spouse: Yeah, I’ll bet she still has a headache.

Me: The point is, she told me about it the way you’re supposed to tell people about that kind of thing! She sounded like, “okay, my kid was a lot to keep up with sometimes, but isn’t this a cute story from his childhood?”

Spouse: I was pretty cute.

Me: Quit bragging. I need to yell some more. About BAD people.

Spouse: Ah.

Me (checks phone again): oh yeah okay want to hear more about how UNBEARABLE autistic kids can be?

Spouse: …do I?

Me: YES

Me: This teenager needed the ins and outs of performing a household chore explained. A few times.

Spouse: Um…

Me: I KNOW CAN YOU EVEN BELIEVE IT

Me: ISN’T THIS STORY JUST SO SAD

Spouse: Actually, yes.

Me: IKR if only her stepkid were neurotypical!

Me: They NEVER need to be showed how to, I don’t know, do their own laundry. Clean a bathroom. Make a piece of TOAST.

Me: And what’s really sad is that this poor kid keeps asking how to do this chore just right because he’s worried he’ll get it wrong! 

Me: Because he CARES about her!

Me: That’s something else she complains about!

Spouse: Seriously?

Me: FOR REAL

Me: LISTEN UP

Spouse: kinda can’t help it over here

Me: She likes a particular brand of cherry-flavored soda.

Spouse: um okay

Me: So her sweet anxious autistic stepkid says he thinks she’d like cherry-flavored 7UP. Brings it up a lot. Keeps offering this as an option that maybe she would like. Because he pays attention to what she likes, and he wants to make her happy.

Spouse: The horror.

Me: So she has to keep telling him, “no, I just want plain 7UP.” She said that! As a complaint! About HIM!

Me: She’s all, “he just won’t get the message that I don’t want cherry in my 7UP!”

Spouse: That’s a weird hill to die on.

Me: What even IS that? “YOU CANNOT PUT MORE FRUIT IN 7UP”

Me: “THERE ARE ALREADY LEMONS AND LIMES IN THERE”

Spouse: Good point.

Me: Thanks!

Spouse: It’d be like that scene in “Ghostbusters.”

Spouse: “Human sacrifice, dogs and cats living together. Mass hysteria!”

Me: EXACTLY

Me: I HAVE to post about this!

Me: I am SO sick of people acting like if an autistic kid is annoying or irritating or just not exactly what you were in the mood for at any given moment of your parenting life, OH NO AUTISM BE SO HORRIBLE

Me: I don’t mean parents who are longing to be able to communicate with their autistic kids and they can’t.

Me: Or parents who are feeling shell-shocked because of all the rage-and-despair screaming we can be wont to do.

Me: I mean people who have perfectly okay kids like THIS kid and they’re all “ew autism BOO”

Spouse: Yeah, that’s really rough.

Me: Like, seriously? Do these people think that that’s how autism is diagnosed?

Me: Because just-plain parenting is always only ever AWESOME?

Me: “Hello, parent. I’m a medical professional. Did you just say that your child is not a perfect pleasure in every way, shape, and form?”

Me: “Oh, no! They must be AUTISTIC!”

Me: …so yeah. Gotta blog about this.

Spouse: Sure.

Me: But I guess I have to protect some privacy. I mean, I’ll change the kind of soda she was bitching about.

Spouse: Yeah, I guess.

Me (hopefully): do I have to, though?

Spouse: Well…

Me (totally wistful now): I mean, even though she obviously totally deserves it, I guess there’s no way I can use her real name, right? 

Spouse: It depends.

Me: Really???

Spouse: If her name is common enough, you might not need to change it.

Spouse: What did you say it was?

Spouse: Awful McHorrible Pants?

Me: (dies of cackling)

Blind Mind and the Elephant

I have to admit I’ve had a hard time understanding what’s so hard to understand about aphantasia. I mean, it’s the lack of an ability. Shouldn’t we be the ones peppering the neurotypicals with questions about what it’s like to be able to “see” in your head?

Some of us spend plenty of time doing just that, without ever having to leave the privacy of our own homes.

Me: …okay, so when you read a book, you get a kind of “movie” as the story unfolds?

Spouse: Yep!

Me: …so when you’re driving and listening to a recorded book…?

Spouse: Movie.

Me: How do you not crash the freakin’ car???

Me: That sounds like a lot to deal with!

Me: How do you mange to “see” all that and still get to work on time?

Me: HAVE YOU BEEN CRASHING THE CAR AND JUST NOT TELLING ME?

It’s never boring at our place, is what I’m saying. 

But I digress.

It’s still weird surprising to me that doing without is difficult for some to grasp. We’ve all shuddered sympathetically at the stories from those who’ve been lucky enough to survive COVID-19 but had to cope with the loss of smell and taste. But I haven’t heard anyone say, “okay but wait okay but wait okay hang on you HAVE A TONGUE how can you not taste the food just put the food on your tongue!”

Okay, maybe someone has said that. The human race has not exactly been setting records for intelligence and grace lately. But if they did, I think the rest of us would wince and shake our heads. What’s not to understand? A sense someone had doesn’t work now. That’s awful. It’s also brutally simple.

I’d assume that empathizing with, say, lifelong total blindness would also be the kind of stretch an able-person could make without too much trouble. That’s pretty bare-bones. And since blindness is a subject I’ve been interested in since childhood, rest assured I’ll be blogging about it soon – especially since I’m currently reading an autobiographical YA novel by and about a woman who lost her sight at the age of 14. Her ability to visualize even after she lost the ability to see was a huge help to her. It was mystifying to me the first time I read this novel, when I was 14 and didn’t know I had aphantasia.

Which brings me to my point, which is that neurotypical people have some perfectly legitimate questions about what it’s like to navigate the world when you have aphantasia. So I should really take that stick out of my butt try listening and understanding a little better. I could expand my own thinking. I could learn something. 

I might even enjoy myself, as I did while on the phone the other day with my sister Sid.

Sid: Okay, so I’ve been reading your blog.

Me: (as all good people should)

Sid: And here’s what I don’t understand.

Me: Yeeees?

Sid: When someone tells me to think about an elephant, I picture an elephant. I see it in my head.

Me: Uh-huh.

Sid: …so what do you do if someone tells you to imagine an elephant?

Me: (well, first I find some less bossy people to hang out with)

Me: (just kidding y’all)

Me: (you’re exactly the right amount of bossy don’t ever change)

Me: Okay.

Me: Well.

Me: I guess.

Me: I think of what an elephant is like.

Me: Like, okay, when I was young I went on an elephant ride.

Me: And elephants are so so sweet but their skin is ROUGH

Me: and that hair!

Me: I mean they don’t have a lot but what they do have is SO PRICKLY

Me: Also, my kiddo used to be WILD about elephants.

Me: That’s a pretty normal two-years-old way to be, I think.

Me: So: it was October and we all went to the zoo for a special elephants-get-to-eat-pumpkins day.

Me: my boo was also quite in love with pumpkins at this point

Me: We got there plenty early, and the people who take care of the elephants had laid out a lot of pumpkins. An elephant came out and surveyed the landscape in a majestic manner.

Me: He walked up to a huuuuge pumpkin, set his front foot on it, and just kind of leaned forward.

Me: That pumpkin did not stand a chance.

Me: The elephant picked up a great big piece of pumpkin rind in his trunk and brought it up to his mouth. 

Me: and the crowd went WILD

Me: seriously rock stars don’t get this kind of love

Me: needless to say, my boo was so excited by this juxtaposition of the two things they loved most in the world.

Me: for a minute, that baby couldn’t get the words out.

Me: they stammered: “elephants – eat – “

Me: and then they had to start the sentence over, because the excitement was just too much.

Me: but finally they managed to say

Me: “Elephants – eat – more pumpkins?”

Me: I assured my boo that this was indeed the case.

Me: and I’m telling you right now, no one has ever been happier than my kid was right then.

Me: my kid has never been happier than they were at that moment.

Me: It’s kind of sad that they probably don’t remember hitting peak happiness at the age of two.

Me: That’s the way it goes, I guess.

Me: Nothing else that happens can ever be quite as awesome as elephants and pumpkins.

Me: …so, anyway.

Me: If someone ever asked me to imagine an elephant, that’s what I’d do.

Sid: (dies of cuteness overload)

Just kidding. Everyone involved survived that phone call.

It gave me a lot to think about, too.

Like: okay, I would love to be able to imagine an elephant so hard that I’m (apparently!) in danger of crashing my car. I would love to be able to go to the movies without even having to buy a ticket, the way my spouse can.

But in a way, I have a movie of my own.

It’s more of a movie script. I think in stories. I think in words.

But just because I can’t visualize that day doesn’t mean I don’t get to remember it. 

So: elephants + aphantasia = not really missing out, so far as I can tell. 

As long as someone remembers to bring the pumpkins, of course.

I’m Afraid (Not)

“WAKE UP!” my best friend screamed, startling me from a sound sleep. It was midnight, I was ten years old, and we’d just conked out after a giggly evening at her house.

“What is it?” I asked, immediately alert. It was impossible to be groggy through her ear-splitting shrieks.

“FIRE THERE’S A FIRE WAKE UP IT’S A FIRE”

Goodness, I thought. We’d better get out of here, then.

I’d been to her place before. It was a second-floor apartment in a very open, outdoorsy complex. Her bedroom wasn’t far from the front door. My overnight bag was near, but there wasn’t anything in it I’d regret losing. Anyway, all the fire safety classes at school had told us not to try to bring anything with us if we had to leave a burning building.

“WHAT ARE YOU DOING?” my friend yelled.

“…leaving?”

“It’s not HERE,” she said, as if irritated by my obtuseness. “LOOK.”

She pointed at the window. Across the way, another building was in flames. 

The emergency vehicles were already there, which was probably what woke her up. The place was pretty badly burnt, but at least the fire wasn’t going to spread. We certainly weren’t in any danger.

We watched solemnly. Nobody was shouting or crying, and there weren’t any ambulances, so we didn’t have to feel guilty about our fascination.

Later, when we were trying to fall back asleep, I asked the question that had been puzzling me since she’d hollered me awake. “If you knew our building wasn’t on fire, why were you shouting so much?”

She looked at me as if my hair had just turned green. “If our building had been on fire,” she said in a duh tone of voice, “I wouldn’t have been able to say a word. I would have been too busy screaming.”

I haven’t thought about this incident in years. But something that happened yesterday brought it to mind.

Not a fire, thankfully. Nothing dangerous at all. I’m pretty sure.

I certainly didn’t feel as if I were at risk. And that’s what got me thinking.

But I’m getting ahead of myself.

Yesterday morning, I went for a jog. I live in a city but my apartment is near a quiet residential area. If I’m out early enough, I can feel as if I have the whole world to myself.

I was out before six and the morning was so perfectly peaceful it felt like a prize I’d won without even having to buy a raffle ticket.

I’m a creature of habit and tend to run the same loop. As I was about to turn around and head home, I noticed some movement in the pretty, rustic-looking yard of a lovely house.

At first I thought: aw, cute dog. But this furry brown quadruped wasn’t shaped right for that. The proportionality of the legs was off. And those long tall pointy ears! Gawd, this little weirdo was flippin’ adorable! Maybe it was a deer? 

Regrettably, we do not live in deer territory.

We do, however, get our share of coyotes. 

This one looked as surprised to see me as I was to see it. I’m sure we were both thinking about the same thing, albeit in our different ways: should I be worried?

I felt calm, and curious, and frankly delighted.

I didn’t feel worried. 

Problem is, I often don’t when I really should.

I wasn’t scared by that fire even when I thought it was in the same building I was.

I hadn’t been scared the year before the fire, when a school bully gave me a hard time. She’d menaced most of the girls in my class, and now it was my turn. She cornered me in the restroom, threatened me, and then dared me to fight her. I guess she figured she was safe against someone who spent as much time in the library as I did. She looked absolutely shocked when I shrugged and punched her. Then she started to cry.

For the record: I didn’t enjoy it, any more than I enjoyed thinking I was in a house fire. In both cases, I planned a route to the door and acted accordingly. I didn’t enjoy it. But I wasn’t scared.

I also wasn’t scared a few years later at a Greyhound bus station when a man pulled out a shotgun and started shouting. He was talked down and restrained a minute later. No one was hurt. 

If my feelings could have been put into words, they would have been something like the worst will happen or it won’t. 

I didn’t want the worst, but I wasn’t afraid of it.

I’m not afraid of snakes. Or bees. Or spiders. Or scorpions.

I’ve had surgery a few times, and I wasn’t afraid of that. I’m hoping to volunteer for surgery once the world opens up a little more. I’ve been wanting to donate a kidney anonymously for years now. It’s finally starting to look like a good time for it. I’m figuring out how to make sure this works for everyone involved: my family, my pets, the building I manage. I’m worried about my recovery period being difficult to manage logistically. But afraid? No.

I’m not afraid of flying in a plane – in fact, I love it, especially when I can have a window seat. But I haven’t been able to fly very often, even before the pandemic.

That’s partly because I’m broke. But part of the reason I don’t fly very often is: even when I can afford to, I think about going to the airport. I think about being at the airport. All those people. All those questions. Forms to fill out. Ambient noise to deal with. People talking to me and expecting – demanding – answers.

Yeah. No.

I love roller coasters. I’m terrified of cars.

I have run into the middle of the street to grab a runaway stroller, pushed it back to the sidewalk, shrugged off a parent’s thanks, and gotten back to my jog without thinking any more about it.

I have run back into my apartment because the mail carrier is between me and the building entrance and my social anxiety is running things today.

The best afternoon of my life was spent on the back of a galloping horse.

The worst afternoon of my life was spent driving somewhere I hadn’t been before. Doesn’t matter where. Doesn’t matter why. It was just an errand. To a place I’d never been before how am I supposed to get through this I can’t do new places why won’t people let me stay home.

I am utterly daunted by things most people don’t seem to think twice about.

I am unfazed, even delighted, by things that really should bother me. 

I know this. I just don’t seem to be able to change it.

I’ve been asking around, and this seems to be an autism thing. We’re the ones who do just fine in genuine emergencies and then curl up into a ball because oh sorry there’s some paperwork to fill out now.

I’d written most of this post when I got a call from my spouse. He went in for an outpatient pain-treatment procedure this morning. He’d spoken to the staff several times and they assured him that he’d be fine to drive home after.

Plot twist: all the people he talked to were wrong and no he couldn’t take a ride-share home. 

Here’s how THAT went, in case you’re wondering.

Me: wait okay wait okay wait

Me: you’re saying you need me to drive somewhere new today

Spouse: I’m really sorry.

Me: but I didn’t know I’d have to drive today

Spouse: Yeah.

Me: I really need to know in advance if I’m going to have to drive somewhere

Me: we know this about me this is an established fact

Spouse. I know. I’m sorry.

Me: wait okay hang on okay wait I have to check something

Spouse: …um, okay…

Me (frantically running downstairs): why didn’t they tell you I needed to drive today

Spouse: It was a miscommunication between the doctor and the hospital staff. 

Me: okay I’m looking at the car

Spouse: …great!

Me: okay I’m in the car

Me: I turned the key a little but it isn’t really “on”

Me: the car I mean

Me: is that what it’s called when a car starts is it “on” I’m not good at cars

Spouse: I haven’t actually had the procedure yet…

Me: I know just let me do this

Spouse: That’s fine.

Me: so if I have between a quarter and a half of a tank of gas is that enough?

Spouse: Absolutely!

Me: There and back again?

Spouse: That’s right!

Me: ARE YOU SURE???

We sorted it out eventually. Suffice to say it was just as well for everyone involved that in the end I did not have to drive to a new place on a day that nobody told me I was going to have to drive today seriously neurotypicals I don’t know how you do this but I think you’re kind of weird.

Deep breath.

I’m going to go for another morning jog tomorrow. Early. It’ll be beautiful and quiet and I’ll get to feel like the only person in the whole world.

Unless I’m lucky enough to see more coyotes, of course.

Maybe this time I’ll get to see a whole pack of them.

That would be so cool.

Actually, I CAN Imagine

Spouse: hey, did you get a chance to read that article I sent you? The one about aphantasia?

Me: YEP

Spouse: …I thought it brought up a lot of interesting points.

Me: SURE DID

Spouse: Um, I liked that the author specifically countered the idea that aphantasia equals uncreative. I loved hearing about that guy who works at Pixar who has aphantasia. Clearly he must have imagination!

Me: YEAH THAT WAS GREAT

Spouse: …and I thought it was kind of cool that the doctor they interviewed said he didn’t think aphantasia was a disability.

ME: ACTUALLY HE SAID “DISORDER”

Spouse: Oh?

Me: HE SAID “THIS IS NOT A DISORDER IT’S A VARIATION IN HUMAN EXPERIENCE”

Spouse: I mean, that’s kind of nice to hear.

Me: “AN INTRIGUING VARATION” TO BE EXACT

Spouse: …yeah, that fits in with the idea that aphantasia could be about more than just visualizing or not visualizing. Like I can visualize really well but I’m not very good at remembering songs. And I can’t imagine flavors at all. Whereas you have aphantasia and you always have music going in your head. And you can “taste” anything just by thinking about it. Hey – maybe that’s part of why you’re a better cook than I am.

Me: YEP YEP FASCINATING STUFF 

Spouse: …is there a reason you’re shouting so much?

Me: AM I

Spouse: you really are yeah

Me: GOSH I CAN’T IMAGINE WHY

Spouse: …

Me: SEE WHAT I DID THERE 

Me: I HAVE APHANTASIA AND I CAN’T VISUALIZE

Me: SO I SAID I CAN’T IMAGINE 

Me: BWAHAHAHA

Spouse: -_-

Me: HEY DID YOU READ THE COMMENT SECTION OF THAT ARTICLE BY ANY CHANCE

Spouse: Oh, dear.

Me: YEAH IT’S GREAT YOU SHOULD TAKE A LOOK WHEN YOU HAVE A MINUTE

Spouse: Should I?

Me: ABSOLUTELY

Me: OTHERWISE HOW WILL YOU KNOW IMPORTANT STUFF

Spouse: …like?

Me (finally, blessedly lowering my voice) (but still sounding really ticked off): “I wonder if sociopaths are more likely to have aphantasia than non sociopaths are. It would fit, wouldn’t it?”

Spouse: Seriously?

Me: No, no – I made that up.

Spouse: Really?

Me: NO

Spouse (sighing): Oh, boy.

Me: What is WITH that guy? I can’t visualize, so I must be some conscience-free creep? How does THAT qualify as a logical leap?

Spouse: yeah people get some ridiculous ideas

Me: I mean, seriously! That friend of mine heard about aphantasia when the articles about it started coming out a few years ago and all of a sudden my feed is full of illness-as-metaphor nonsense like, “oh, yeah, I bet people who have aphantasia don’t support social safety-net programs. They can’t visualize, so they can’t imagine what it’s like to be someone else, so they don’t have empathy, so they’re big jerks.” 

Spouse: To be fair, she didn’t know you were –

Me: I mean, here I am just minding my own business, taking care of the building, taking care of kids, taking care of animals, baking for friends, baking for family, just generally baking a LOT. 

Me: Hey – since I bake so much, doesn’t that mean I’m sweet? I mean, I’m around all that SUGAR. That’s how it works, right?

Spouse: um

Me: So anyway, here I am just going along thinking I’m kind of an okay person. 

Spouse: Sure!

Me: And then –

Spouse: um

Me: BOOM

Spouse: GAH

Me: Turns out I’m a big screaming sociopath!

Spouse: I don’t think that’s –

Me: I reeeeally wish they hadn’t turned off the commenting on that article. I NEED to ask that guy some questions.

Spouse: Okay, maybe not such a great –

Me: “Gosh – am I a sociopath if I punch you and enjoy it, but I know I’m not supposed to enjoy it?”

Spouse: hmm

Me: “Plus I’m 53 years old and I’ve never actually punched anyone and wouldn’t you think if I were a sociopath I’d have done SOMETHING interesting by now?”

Spouse: I think you’re just lazy.

Me: Gosh, thanks. 

Me: Honestly, I don’t know which one’s more huggable: THIS guy, or the murderer who said in pretty much so many words, “Hey – I’m a white supremacist. Do NOT go around telling people I’m AUTISTIC. I don’t want them getting a bad impression of me.”

Spouse: Seriously???

Me: Yeah, but that’s another blog post for another day.

Could Your Child Be Neurotypical?

Many neurodivergent parents are understandably concerned that their children may be neurotypical. The following list is not intended to be a substitute for a medical diagnosis. Getting a sense of neurotypical behavior patterns may, however, be a helpful first step toward getting your child the help they need.

If your child is neurotypical, they may engage in many, most, or (in extreme cases) all of the following behaviors:

1. Lying

Neurotypical children can be perfectly intelligent – certainly smart enough to be able to distinguish fact from fiction at least some of the time. However, neurotypical children have an unfortunate tendency to be dishonest. According to recent studies, over half of all neurotypical children between the ages of 7 and 13 will deliberately tell an untruth. Many of them will do so while gazing calmly and directly into the eyes of the person they’re speaking to – another troublingly common neurotypical behavior.

2. Lowered sensory sensitivity

Neurotypical children may seem blithely oblivious to sounds, textures, patterns, and/or temperatures. If this is the case for your child, try not to be visibly upset by what admittedly seems like a clear lack of perceptual intelligence. The important thing is to love your child for who they are, not what you wish they were.

3. Inability to follow simple rules

This is a pattern of behavior that tends to persist into adulthood, even when the rules in question are clearly beneficial. Most neurotypicals, for instance, see nothing wrong with violating speed limits, whizzing past stop signs, and texting while driving, even though these behaviors have been proven time and time again to be potentially harmful both to those engaged in them and those in the immediate vicinity.

4. Troubling enthusiasm for touching

“Neurotypicals will often grasp, clutch, and paw others in an effort to express affection,” one expert explained. “It can be unnerving, but parents should bear in mind that these children aren’t being maliciously intrusive. They simply have different ideas of personal boundaries and acceptable behavior.” 

5. Failure to notice or understand social cues from non-human animals.

“My child takes so much pride in being able to recognize her friends’ faces quickly and easily,” one parent reported. “And that’s great. But she got bitten by the cat the other day because she kept petting it in a way that was clearly uncomfortable for the poor creature. No matter how much the cat flattened her ears, opened her eyes wide, and just showed no enthusiasm at all for the situation – well, there was my little neurotypical kid, just going on with what she wanted to do. The saddest part was how confused she looked when Fluffy finally gave up trying to explain and ran away.”

6. General inability to remember strings of information

Many neurotypicals are unable to retain even basic data such as phone numbers and license plates. Be patient. Remember – they aren’t being deliberately obtuse. 

7. General inability to take pleasure in quiet, solitary activities

Sadly, this can persist and even worsen in adulthood.

8. General disinterest in dates

Neurotypicals of all ages are often breathtakingly ignorant of even the most basic historical knowledge.

9. General lack of intellectual interests

Neurotypical people are overwhelmingly more inclined to socialize than to spend time at libraries or museums.

10. General and often dangerous inclination to stand around in rooms with strangers, imbibing brain-damaging chemicals and listening to music played at unhealthily high volumes

If your child is neurotyical, they may grow up to expect you to partake in such behavior. 

11. Startlingly spontaneous behavior

“Brace yourself!” one expert (and parent of two neurotypical children) cautions. “This randomness can be hard to take, but patience and consistency can help bring it down to an acceptable level. The ability these children have to take pleasure in abrupt, arbitrary changes of course might even be seen as a gift under certain circumstances!”

12. General tendency to under-plan

“Neurotypicals of all ages often want to just ‘wing it,'” the abovementioned expert confirmed, smiling and shaking her head. “Scripts? Schedules? What are those?” 

13. Poor classification skills

Neurotypicals have a regrettable tendency to categorize people who are even slightly different from themselves as flawed rather than merely dissimilar.

Remember: having a neurotypical child is not a tragedy. It is, however, something that should be diagnosed as early as possible.

I Read A Whole Sentence (Almost)

The good news is, I made it to the second chapter of Cynthia Kim’s book I Think I Might Be Autistic.

The bad news is: that first chapter is super short and is actually technically the introduction.

Literally, the first chapter looks like this:

“1. Introduction”

I went ahead and let myself flip out about this for a minute, since clearly I need all the distraction I can get on this journey.

That minute looked like this:

okay seriously when you’re writing a book you can have an introduction or you can go right to the first chapter but cheese and crackers you’re NOT SUPPOSED to have a first chapter called “Introduction” that’s like having a pet turtle named Lizard it’s just confusing now if you had a pet turtle and you named it Chicken yeah okay THAT I can get behind because if you’re going to be a certain kind of wrong you need to go big or go home

and then I reined myself in and calmed myself down and read all the way to the second chapter, where I got all the way through most of the first sentence before the flipping out began again.

I let it spin itself out this time, because what I was upset about wasn’t a distraction. It was a real issue that I had to let myself grapple with meaningfully. Otherwise I wouldn’t be able to read the rest of the book. The noise in my head would be too loud to let Cynthia Kim get a word in edgewise. And I do need her words in my life right now.

I just need to take them at my own pace.

So here’s a little thinking/journaling I did about that first sentence, with some help from a dictionary and one of my more soothing internal voices.

* * * * *

Why does it have to be called a “disorder”? Neurotypicals don’t exactly have their collective act together, either!

(looks up “disorder”)

First definition: “lack of order.”

(looks around room at stacks of books, piles of papers, and heaps of unopened mail)

Fair enough.

“2. Breach of the peace or public order.”

(thinks about how hard it is for me to get up nerve to leave the house even when there isn’t a pandemic)

Yeah, right. 

“3. An abnormal physical or mental condition

// a liver disorder

// a personality disorder

(sighs)

Again, fair; but do they have to make it sound so terrible?

they aren’t. they’re just stating a fact. you are different from the norm.

Not JUST different, sounds like! BAD different!

not necessarily. it’s not a judgement call.

anyway, why should that bother you so much? you have endometriosis. you don’t feel affronted when a doctor calls that a disease.

Yeah, but that’s something I have, not something I AM!

Anyway, I think I like “disorder” better when it’s a verb.

“1. To disturb the order of.”

Aw, yeah! I want to shake up that narrow, limited, limiting, ableist, neurotypical world order.

“2. To disturb the regular or normal functions of.”

I promise to do my best!