Deborah Markus's Blog, page 4

When 111 pages are more than 1,111

Several years ago, I bought a book by Cynthia Kim. It’s called I Think I Might Be Autistic: A Guide to Autism Spectrum Disorder Diagnosis and Self-Discovery for Adults.

This isn’t the kind of book you pick up on a whim because you’re looking for a light summer read and you figure, what the hell, I need something to bring to the beach.

I won’t say how many years ago I bought this book because I’m embarrassed.

I’m not embarrassed by the fact that I need this book.

I’m embarrassed by the fact that I need this book and it’s taking me so long to read it.

This is not a long book. The print edition is just over a hundred pages. One hundred and eleven, to be exact. Which I like to be.

To put it in context, I recently finished rereading an eleven-hundred-page biography of the Brontë family. It took me a few months because I was taking copious notes and reading other books at the same time.

Reading that book went like this:

1. Sit down with Brontë bio.

2. Read.

3. Use miniature Post-It notes to mark passages that I find interesting and/or that contain information I’ll need for writing of my own.

4. Jot down notes in dedicated spiral-bound notebook.

5. Reluctantly stop reading when household chores need doing.

6. Repeat until finished reading book.

7. Optional: cry at the end because Charlotte Brontë outlived all her siblings and then died of pregnancy-related complications less than a year after she married a man she’d started off lukewarm about and ended up adoring.

In contrast, here’s how reading I Think I Might Be Autistic has been going:

1. Sit down with book.

2. Read maybe one page.

3. Start crying.

4. Put book down.

5. Studiously ignore book’s existence for like six months.

6. Sit down with book again.

7. Think, “Okay, at least I’m prepared this time.”

8. Read maybe two pages.

9. Go “OKAY YEAH REALLY WASN’T READY THIS TIME.”

10. Hide book for seriously a year and a half this time.

11. Think, “Okay, look – I bought this book. I need this book. I need to read this book, for crying out tears.”

12. Read two whole chapters.

13. Cry out tears.

14. Because one of those chapters was a test and you somehow scored 900% when it comes to “yeah, seriously, you really really might be autistic.”

15. Because this isn’t just one of those online quizzes where you find out which Disney princesses you’re most like.

16. This is a test written by someone who went through the long slog of getting a formal diagnosis as an adult and who went back and pulled together all the real tests people are given in the course of getting such a diagnosis and then wrote them up in accessible language so yeah you might not be talking to a professional just yet but yeah this test is fairly meaningful.

17. And some of this is stuff you didn’t expect to be on an autism test because you didn’t even realize this was a thing not everybody does.

18. I mean, how could you? If you do it, you figure it’s normal.

19. Doesn’t everyone write a script before making a phone call?

20. Even if it’s a social rather than a business call?

21. And if using lots and lots of metaphors is wrong, sign me up for Team Bad!

22. Oh, god – not everyone flips out when they have to do laundry on Tuesday instead of Monday.

23. OH GOD other people can just walk right into a new coffee shop and head straight for the place where you order coffee rather than being completely, debilitatingly distracted by details like a picture on the wall and then a pattern on someone’s shirt and then the sound the espresso machine makes.

24. Other people don’t feel like they’re getting thrown out a window every time the loud loud LOUD espresso machine does its business.

25. Other people don’t seem to think it’s all that loud.

26. Other people don’t even notice some sounds.

27. Other people can just go on talking even though there are cars driving by.

28. And birds singing.

29. And someone across the room who’s also talking.

30. And seriously can no one else hear that airplane I feel like I’m bleeding from both ears and everyone’s just chatting away like nothing’s wrong.

31. Nothing is wrong.

32. For them.

33. I’m the weird one.

34. I don’t know how to cope with this.

35. I don’t mind being autistic but I do mind feeling like there’s something “wrong” with me.

36. I’m stuck on a planet where all the tastes and temperatures and textures don’t feel right at all.

37. I’m a dog howling in pain because the humans designed sirens for their range of hearing, not mine.

38. I think I need to put this book down for a while.

So, yeah – it’s been slow going.

I posted in a group for autistic adults about how hard it’s been for me to read this book, and how ashamed I feel of that. I mean, I’m a research writer, for heaven’s sake. This is what I do. I get interested in a topic and read a million and six books about it. 

And now I can’t read one? A short one?

The outpouring of love, sympathy, and support was immediate and overwhelming.

I won’t give more specifics because I haven’t asked to, but I will quote one message in particular:

“You are not alone.”

Maybe those words shouldn’t matter so much, but they do.

I am not the only one frightened and unnerved by this process.

Heck, I’m not even the only one panicking as I read this exact book.

“Be gentle with yourself,” several people in the group urged.

Deep breath.

I’m reading this book, and I’m finishing it this time.

And I’ve got a blog to keep me honest if I start to feel afraid again.

There’s A Word For That

I had just finished some household chores and was about to sit down to get some writing done.

Me: Okay, I know I should work on my blog but I really want to finish that chapter of my novel that’s been giving me so much trouble.

News podcast I was listening to: AUTISM!

Me: -_-

Me: Blog it is.

* * * * *

I’m sure there’s a name for it – that thing where, for instance, if you’re pregnant all of a sudden hey when did EVERYONE become pregnant? You feel as if there’s no way you wouldn’t have noticed so many expectant uteri before your own became a construction zone. There must be an upswing in numbers! This isn’t just you!

And of course the answer is: yeah, it is. It really is just you taking an unprecedented interest in the subject. 

So I’m trying to take a deep breath and be a rational human being and oh dear gawd now that I’ve started doing the research and am cautiously seeking a formal diagnosis of autism EVERYONE is talking about autism. News podcasts. Magazine articles. Advice columns. The comics section of the Sunday paper, for corn’s sake. And that’s just in the past few weeks! This can’t be a coincidence! Everybody really is–

No, okay, they’re not. Not anymore than usual. It’s just hitting home in a way that it didn’t used to.

* * * * *

I guess I should be glad the neurotypical world is talking about us at all. 

But – do I have to?

Recently, “Non Sequitur,” a comic strip I otherwise adore featured an autistic character. I know you’re going to be shocked, but – oh my gosh! what??? – the character was a preadolescent nonverbal white boy whose powers of imagination are literally magical! 

I’m sure he’ll show up again someday. Probably when one of the NT characters has a tricky math problem that needs solving.

The podcast I mentioned up top, the one that derailed my plans for the morning, was NBC Nightly News. They featured a segment about hiring people with autism. They came down firmly on the side of “yeah, DO that.”

Okay. Good. Saying that unemployment rates among the autistic population are “high” is like saying that you heard somewhere that the ocean might be wet but you’re waiting for additional information. 

And by the way, we’re not talking about the autistic people like my younger brother, the folks who are literally incapable of taking basic care of themselves let alone holding down a job. We’re talking an 85% unemployment rate among autistic people who have university degrees. 

So, okay. Good for NBC. Get the word out there.

Sure, I found the segment squirmarific. But I’m the snarky one who always fast-forwards through NBC’s “Inspiring America” segment. That’s on me, not on NBC. Plenty of people – nice people, good people, people who are a lot more fun to hang out with than I am –love feel-good stories. 

And yes, I’m one of those people who loathes any hint that I should be grateful any time my group isn’t actively being treated like garbage. I’m a woman who grew up hearing that what we now call sexual harassment was actually “just a compliment!” I was a couch-homeless minor who was repeatedly told that I should be glad anyone was willing to give me a roof over my head – something I didn’t hear other sixteen-year-olds being told. I’m an autistic person who can’t get away from Facebook-feed warnings that vaccinating children will – horrors! – make them autistic.

I have always sought refuge in books, and was delighted to find Mary Garth in Middlemarch. Mary is cute rather than beautiful, intelligent and unwealthy, and forced to work for very little pay as nurse to a cranky rich man. Her defining characteristic is “a strong current of gratitude towards those who, instead of telling her that she ought to be contented, did something to make her so.” 

Amen, sister!

I realize I was staggering under an unwieldy amount of baggage when I gritted my teeth and listened to the whole damned NBC segment on Autistic People – Just Like Humans, Only Cuter. I realize that, yes, unfortunately, neurotypical people really do mostly only know negative stereotypes and it’s important for them to hear a business owner enthusiastically endorse hiring autistic people.

If I flinch at hearing my group described as “the hardest-working group of people that I know,” that really is on me. Probably. 

But damn it, do I have to be thrilled when a reporter dutifully asks, “What would you say to companies who are afraid to hire people who are different?” 

Am I allowed to at least think, “I’d say screw you, ass-clown – how is ‘I’m afraid because you’re not like me’ any different from any other -ism?”

* * * * *

Me, showing the first five lines of this post to my spouse who walked in while I was still typing: Here. Read this.

Him: Huh.

Me: Yep. I just can’t get away from Autism! In! The News!

Him: Funny you should mention that. 

Me: oh gawd WHAT

Him: (tells me about the news podcast he was just listening to, where they were reporting on some people who were arrested and are being brought up on charges because they were peddling “medicine” to parents who want to “cure” their children’s autism.)

Me: (steps away to start punching various inanimate objects)

Me: (has learned how to do this without hurting myself)

Me: (much)

Him: Turns out, the “medication” was bleach.

Me: Yeah well I’m sorry but that’s not all that’s wrong with this story. Not by a mile.

Him: Nope.

Me: Why is my group so horrible and scary to neurotypicals?

Me: Like, oh, yeah – neurotypical kids are always SO easy to take care of. Always! Guaranteed or your money back!

Me: And of course non-autistic adults NEVER COMMIT THE MAJORITY OF VIOLENT CRIMES.

Me: Anyone who thinks neurotypicals are so great should maybe notice which neurotribe was trying to get parents to give their kids bleach!

Him: Good point.

* * * * *

Me (texting my spouse while writing this post): Oh, hey – do you know if there’s an actual name for the irrational feeling you get when, say, you’re pregnant and so all of a sudden it seems as if EVERYONE around you is pregnant? Or now that I’m seriously researching autism, it’s in all the comics and advice columns and news podcasts but probably no more than it used to be, it’s just that I’m noticing it more because I’m thinking about it?

Spouse: (sends me a relevant link like five seconds later)

Spouse: (seriously I don’t know how he does it I would not have known how to even BEGIN to google that bad boy)

Link: It’s called the frequency illusion! Also known as the Baader-Meinhof phenomenon!

Me: Whoa! Thanks!

Me: …I do believe I felt a bit of gratitude just now.

Magic Lessons (magic not included)

When I was eleven years old, my parents announced that in one month’s time, I would get to take a class on how to break the laws of physics. 

That’s not how they phrased it. But that’s what it boiled down to.

This was, after all, a weekend course in which kids like me learned to heal people suffering from terminal illnesses, and all we had to do was think about it. We wouldn’t have to be in the same room with these people. We wouldn’t even have to know their names. 

We would just learn to do something very special with our little-kid minds, and the healing magic would happen.

Most of the talk about this class didn’t focus on the playing-doctor aspect of it. The emphasis was mostly on the fact that we would also – wait for it – learn to move metal just by wanting to.

Why this always took the form of bending spoons, I didn’t know. I still don’t.

I did know that I was right to be excited.

My family was a large one and there was no money for anything that could be considered “extra.” We didn’t go out to eat. We didn’t see movies unless they showed up on TV. Summer camp? Music lessons? Vacation trips? Forget it. 

Sending four of their children to this class was a huge financial sacrifice for my parents. But who could blame them? 

I sure didn’t. 

I don’t remember who described the upcoming class to me in these words, but I’ll never forget how I felt on hearing them.

They told me, “After you take this class, you will be able to use your mind to do anything.”

And I drew the very natural conclusion that holy crow: in one month’s time, I would be able to fly.

* * * * *

There are times when I look back at my childhood self and think WOW was I an idiot.

I have never once thought that about this particular incident.

I promise we’re getting to the aphantasia part and that this whole entire post will not be a jeremiad about my childhood innocence and dashed dreams.

But yes, I do think it’s important to point out that, dad gum it, this was not The Secret asking me to think really hard and then I’d get that raise, that promotion, or (more appropriate to my age and situation) that straight-A report card. This was not Norman Vincent Peale assuring me that I could improve my life and general outlook if I used The Power of Positive Thinking as described in his bestselling book. 

The people teaching classes in the Silva Mind Control method said in so many words that one time, a man was suffering from heart disease until a little Silva-trained kid thought the right thoughts about the heart in question, and lo his heart did heal and his doctors were baffled.

These teachers pointed to Uri Geller and said, “Look! This grown man can bend metal just by thinking about it! He can bend every spoon on a restaurant table! We don’t know why he has it in for spoons specifically, but we do know that this means telekinesis is real! Anyone can learn to do it! Yes, little Deborah, you can move things with your mind!”

And little Deborah thought: I’m a thing. I would like to move me. Right up to the sky.

They said I’d be able to do anything.

They specifically did not say “within reason.”

They told me to throw away everything I’d ever learned about being reasonable, get in there, and learn to do the impossible.

I was ready.

* * * * *

Turns out there was a catch.

This was the late 70s. The people teaching this class might have been true believers who genuinely thought they’d be giving me the power! to do! ANYthing!, but they didn’t know that I would be neurologically incapable of following their instructions.

The class took place in a disappointingly ordinary-looking room. So far as I can recall, anyway, and yes you should bear in mind who’s telling you that. I do remember that there were desks and chairs and a lot of toys and games for us to play with during breaks. “Us” meant my sisters, myself, and about twenty other kids.

 The first thing we learned was something called “going to level.”

“Close your eyes,” the teacher said. I did.

“Now, take a nice deep breath,” he went on. 

I was still with the program.

“As you exhale,” the teacher said, “I want you to imagine the number 3 three times in a row. Each time you see it, say ‘three’ to yourself. Not out loud. Just think it.”

I felt a twinge of uneasiness. 

I could think about the number three. Of course I could. And of course I could hear my own little inner voice murmuring the word “three.”

But the teacher had said to “see” the number. 

And as had always been the case with me, I couldn’t see a darned thing. Not with my eyes closed, anyway.

Well. Never mind. Surely the idea of “3” was enough. Especially since we got to reinforce the number with the sound of the word. 

* * * * *

I’ve always been able to hear things in my mind. I don’t recall a moment of my conscious life that I haven’t had music playing up there. Often I’ll wake in the morning fresh from a dream of a song. Usually it’s either a piano piece or a violin accompanied by an orchestra. Recently I’ve started recording myself humming the melody in my phone’s voice memo app. I hope someday to learn enough about musical notation to be able to write my “morning music” down. I really want to learn to play the violin and piano so I can bring these songs to life.

So far as I can tell, my mental ears work as well as my physical ones. Better, in some ways, since they never overwhelm me with unwanted material.

* * * * *

I can’t say that I am completely lacking a pair of mental eyes. I dream in pictures and in color. And every now and then, as I’m closing my eyes to go to sleep, I will be overwhelmed by a dazzling scene – a vision of golden flowers in bloom.

But it never lasts and I can’t call it up if I want it. That haunting field of blossoms, utterly unrelated to anywhere I’ve ever been, is a genie that lives in a bottle of its own making. 

* * * * *

My friends and my spouse have told me that when they read a novel, they also get to see a film of the story, free of charge and effortlessly. They take this power for granted not the way sighted people take their vision for granted – absentmindedly until some event reminds them that what has been given can be taken away – but in a way that never reaches the level of consciousness.

It isn’t a gift if everyone has it.

* * * * *

Up until the Silva class, I’d taken my lack of inner vision for granted in the same thoughtless way. 

“Going to level” set off a faint alarm bell, but I was still, so far as I knew, a common human being.

Then the teacher gave us another exercise.

This one was supposed to help us fall asleep. I think I rolled my eyes a little at this. Falling asleep isn’t something a child wants to do; it’s something our parents want us to do. Gosh, it’s as if they knew who was footing the bill for this class.

And when did the magic lessons start?

“Go to level,” the teacher said. “Now, imagine you’re standing in front of a chalkboard. Pick up a piece of chalk.”

Um.

“Now draw a big circle on the board,” the teacher said. “Inside that circle, write the number 100.”

Excuse me?

“After you’ve written that, I want you to pick up the eraser. Erase the number verycarefully. Very neatly. Don’t erase any of the circle itself. Just the number you wrote inside it.”

No one said anything.

I didn’t have the nerve to open my eyes, but clearly this was a room full of perfectly calm, possibly bored children.

It was pretty clear that no one else was mentally screaming.

* * * * *

Up until this point, I’d honestly thought – though I didn’t have the vocabulary to say it in so many words – that when people talked about picturing something in their heads, they were speaking metaphorically. Same as when they talked about how you should try to put yourself in somebody else’s shoes. 

It was clear from context that this was no metaphor. We were supposed to be actually literally making pictures in our heads. Most of us were doing just that.

One of us was wondering why she couldn’t.

* * * * *

I only heard the word “aphantasia” a few years ago, in a report on the BBC Global News. A journalists who sounded far too amused for my liking told his audience that, yes, really, there were some unlucky souls who – can you believe? – could not see images in their heads.

I didn’t love his attitude, but I felt relieved. Even vindicated. 

Finally, I had a word for who and what I was.

Words are important when you don’t have pictures.

* * * * *

By the time the Silva teacher got to the part where we learned how to get whatever we wanted, I was almost past feeling any excitement. Hope still lingered, but it was faint.

Even if there really was magic to be learned here, did I have any chance of casting that spell? It was looking more and more as if I was the only one who hadn’t been born with a wand.

The teacher picked one child and asked her what she wanted more than anything in the world. I held my breath. 

This was it.

Please, please let her choose something wonderful. Let her say –

“A trampoline!”

It’s a good thing no one was looking at me, because I’m sure my sneer would have gotten me kicked out no matter how much my parents had paid for me to be there.

Seriously? 

Someone offers you the powers of the universe and you ask for a fucking toy?

“That’s great!” the teacher said, beaming. “Now, here’s what I want you to do. In a minute, we’re all going to go to level again.”

Oh, joy.

“When we do, I want you to imagine a trampoline in your yard,” he said. “And I want you to see yourself just jumping on that thing. Thinking about how happy you are to have your very own trampoline. You’re going to imagine that today. Imagine that every day. And I promise you, within a month – two at the most! – you will have that trampoline.”

The girl nodded, eyes bright and excited. 

I felt like Ralphie in A Christmas Story finally getting that stupid decoder ring. 

* * * * *

I’ve had plenty of time to think about plenty of aspects of this class.

I’ve thought about the fact that my parents thought going out to dinner – even at a fast-food place – was beyond our means, but somehow they came up with the hundreds of 1970s dollars it took to give us a single weekend that taught us nothing more useful than a glorified version of counting sheep.

I’ve thought about the fact that it’s very easy for a roomful of kids to “bend spoons with their minds!” when those children are left unattended for hours and encouraged to “loosen up” the handle of their cutlery by pulling and pushing as hard as they want with their hands. When they’re told that this isn’t cheating – it’s just making it easier for your mind to do the real work!

I’ve thought about the fact that this class planted the seeds of critical thinking in my mind. Even my overly credulous young self knew that the only way to test the hypothesis that you could get a trampoline just by thinking about it was to caution that girl never to tell her parents she wanted a trampoline. And even I knew that she’d probably mentioned this to them already.

But until recently – until the word “aphantasia” entered my vocabulary – I never considered the fact that this class taught me about the power I didn’t have. It taught me how different I was. 

And thinking about it, I’d still rather be me.

Yes, I would like to see a movie for free every time I read a book. I would LOVE that. I would pay cash money to be able to do that just once. It sounds amazing. If you can do that – don’t take it for granted. Enjoy that ride. Every time.

But looking back, it seems to me that the other kids in that class had all the powers of visualization anyone could want, and no imagination at all.

Maybe having all that real-life magic power made them feel that playthings were the only things left to wish for.

I may not be able to fly, but at least I know enough to want to.

Aphantasia: A Bitter List

1. Having aphantasia means you lack the ability to visualize. That’s it. That’s all it means.

2. What is up with that phrasing, by the way? We don’t say that people who lack the ability to see “have blindness.” I know several people who don’t have full use of their sense of hearing, but not one of them “has deafness.” I don’t “have” aphantasia. I am aphantastic. Spellcheck has made it clear it’s going to yell at me no matter how I write it, so I may as well enjoy myself here.

3. “Aphantasia” sounds less like a neurological state of being and more like a tourist attraction. Which is exactly how the neurotypical population has been treating it ever since those little darlings finally got around to noticing we exist.

4. As I mentioned earlier, aphantasia is only itself. It’s very specific. It’s about lacking the ability to visualize. THAT’S IT. 

5. Aphantasia is NOT, as at least one neurotypical has suggested in my hearing, about lacking imagination. Imagination is about concepts, not pictures. That’s why blind people can and sometimes do write fiction. You know Jorge Luis Borges, right? Is your first thought on hearing his name, “It’s so sad that after he lost his sight, he couldn’t write any more of his wonderfully weird stories”? Or did you maybe bother to notice that a decade after he became entirely blind, he wrote The Book of Imaginary Beings? Yeah. Yeah, he did. 

6. Not being able to visualize also is not about not being able to put myself in someone else’s place. Yes, I’m talking about something a friend of mine suggested once. More about this in another post.

7. Unfortunately, people say a LOT of ill-informed things about aphantasia. Some of them are strangers who write for television shows. Others are people I know. Those latter folks might not audibly concoct all their strange theories if they knew they were talking about me. It never occurred to them that someone in their immediate circle might actually be aphantastic. Turns out, we look just like people.

8. Not being able to visualize isn’t anything but itself. Being aphantastic simply means I lack a sense most people have.

9: If you’re someone who’s been spouting nonsense about my adorable brain, please take that illness-as-metaphor garbage of yours, wrap it in something rough and rusty, and shove it so far up your own backside that they name a new medical procedure after you.

10. I’d really, really like to be able to visualize. I can’t. If you think it’s just a matter of trying hard enough, good news – I have one million dollars for you. Tax-free. But you only get to claim it if you flap your arms and fly.

11. What do you mean, you can’t? Try harder! Or don’t you want this million dollars? Oh, well. I guess you like being broke.

12. If you’re neurotypical, I promise that all of your neurovariant friends – ALL of us! – have been wishing and hoping and praying you’d stop making weird assumptions and start paying attention to our real live actual lives. 

13. Make someone’s wish come true!

14. …no? Too hard?

15. Try this. Take that amazing ability to see images in your head and, for five whole minutes, use it to picture yourself NOT being an ableist ass-hat. 

16. Maybe just one minute?

17. Please?

Hi there or whatever

Here’s what you need to know about me. 

1. I have aphantasia.

2. Don’t feel bad if you haven’t heard of that. Scientists only made it official a few years ago, and if spellcheck still hasn’t gotten the good word, no need for you to be embarrassed. I’ll explain what aphantasia is in bitter detail in the very next post. 

3. I strongly suspect I have ADHD, and am currently doing the research. I’ll be talking about that here.

4. I more than suspect I am autistic. Yeah, okay. I AM autistic. I’m skittishly making my way toward getting an official diagnosis, but it turns out that’s not always easy when you’re an adult. I’ll be talking about that here, too. A LOT.

5. I am face-blind. Except when it comes to non-human animals. Yes, I will eventually figure out what you look like if I see you in person often enough, but don’t be surprised or hurt if I recognize your dog way sooner than I recognize you.

6. I am place-blind, too. So far as I know I made that word/description up myself. I wish I were making up the fact that I once got lost trying to find the exit to a grocery store, but I’m not.

7. I got lost trying to find the exit to a public restroom once, too.

8. Yeah, okay, fine – that’s happened in more than one public restroom.

9. Bitterness is a recurring theme in my writing for some reason.