I didn’t know what stimming was: But I’ve done it my whole life

Originally published on Medium

When I first realized I was autistic, I felt sad because I didn’t have a major trait: I didn’t stim.

At least, I thought I didn’t stim…

And then I watched more videos by actually autistic people. I listened and watched.

And I remembered.

At church, we stood and sang 3 times at every service and I always swayed to the music. If you’re imagining the rhythmic, cool movements of a choir singer, stop. This is a back-and-forth-rocking-on-my-feet-movement. As I got older, I noticed I was the only person moving so much during the songs. So I tried to stop. If I concentrated hard, I could stand still and sing like everyone else.

And I remembered

Apparently it’s common knowledge that only nervous people fidget and avoid eye contact during conversation. I didn’t want to appear nervous when I actually wasn’t so I willed my limbs to be still. No tapping feet, dancing fingers or floppy arms. Ironically, not moving made me feel nervous and really need to move.

And I remembered

Playing with my hands: fingers tip to tip, squeeze together, make fists, interlock fingers and rock forward. Pretending I need to stretch my arms every 5 minutes just to acceptably move in public.

I remembered

Explaining to people that I “make my own sound effects” so they aren’t surprised by the random noises I make.

Certain songs playing in my head when I’m anxious and catching myself unconsciously humming or singing them aloud.

Doing a happy dance when I eat delicious food.

Dancing alone in my room after school to shake off the emotions of the day. No particular dance style. Just let the music move me to spin and jump and feel.

I remembered:

I do stim.

How I learned to make phone calls (but I think there was a better way)

Originally published on Medium

Today I made a phone call, inquiring about a public event with unclear instructions on its website. It was a simple call, lasted less than 5 minutes and I hung up, relieved to be done, as always.

This time was a little different, though: I randomly remembered how upset I felt when my mom forced me to make a phone call.

Growing up, my mom handled phone calls for me. She made my medical appointments (doctor, dentist, etc) and answered their questions while I sat by her eavesdropping. And then one day, she wouldn’t do it. I needed to make a call and she refused. I don’t remember what specifically I had to call for but it was important and I was upset at this betrayal. I sweated through the call and finished, still upset.

But

Why did I do an anime flashback right now?

I pause, letting my words catch up to the moment.

Oh. Realization: I used to think I got upset because my mom suddenly stopped making phone calls for me. Her attitude? “You should already know how to do this.”

I wasn’t ignorant. I knew she couldn’t do my phone calls forever. I knew I should learn how to do it myself. And I wasn’t scared of hard things. I was willing to be a student. And yet I still got upset.

Because?

The rest of my words catch up.

Because she didn’t acknowledge this was hard for me. This willing student needed a teacher. This wasn’t something I “already know how to do”, no matter how many one-sided phone calls I eavesdropped on. I needed some validation and practical support.

Anime flashback over.

Yes, her method worked. I can make my own phone calls now and I’m grateful. But was that really the only way to get here?

A tale of the over- and understimulated AuDHDer: When watching a video is too much and not enough

Originally published on Medium

I stare at the carpeted floor, annoyed.

Earlier, I had started playing a video from my YouTube watch later list. Seconds passed. Inside, a swirling turmoil protested “This is too much.” Each new sound from the small speakers poked my ears. I was determined to not quit watching again so I muted the sound and turned on closed captions.

Didn’t help.

Ugh. Fine. I relented and closed the app.

And so here I am, on the floor.

I like myself but sometimes I can be really annoying.

Maybe I can listen to something, music? A book? Podcast?

The inner turmoil churns again and I sigh. Nope.

Well reading is always good. I open my tablet again to a new ebook and start reading… and a couple sentences later I close the tablet, put it on the table and lay on the floor, disgusted.

I can’t even read!! What’s going on?

I lay on my back and stare at the ceiling, thinking back over my past month.

I’d had a planned activity almost every weekend. And one weekend there were 2 different things happening (a lot for me)! And during the week, I worked more than usual but slept less than usual. Mostly because it was one of my period cycles where I lie awake pretending I’ll fall asleep any moment until midnight comes. Then I finally give up and read until I can fall asleep. And once my sleep schedule is that messed up, it needs time to get back on track.

“Wow,” I say aloud to myself. “Sorry, I didn’t realize I needed a break.”

So I keep staring at the ceiling and go back to an old childhood game: what would it be like if the ceiling and ground were swapped and we walked on the ceiling? I imagine it. Then I close my eyes and breathe, allowing the inner turmoil to slowly lessen enough so I can handle stimulation later with…a walk? Or some music?

Ehh, we’ll see what I can handle.

Thanks to Helen Olivier’s article If You Are Autistic with ADHD, You Are a Study in Contradictions for inspiring this.

Interpreting human emotion isn’t just about facial expressions: How this autistic woman uses information to read people

Originally published on Medium

I recently learned that we all have more than 5 senses. The 3 other senses are: vestibular (our movement and balance sense), proprioception (awareness of the body’s position in space) and interoception (feeling internal body signals like hunger and thirst).

Clearly, my first-grade science lessons are outdated.

I think I have another sense, too, that I use to understand people. Although I can’t read faces that well, I read other information like an open book written in a foreign language I learned overseas.

Let me explain.

In books, we can’t see faces, right? So how do we know when a character is upset? The author “shows” us with description, like the following sentence:

She crossed her arms, narrowing her eyes at the photo.

But based on this description, the character could be feeling suspicious, or standoffish, or maybe she’s just examining the photo closely with narrowed eyes since she forgot her magnifying glass at home.

The author needs to add clarifying information, either some context or a simple adverb. For example, she edits the sentence to say:

She crossed her arms, narrowing her eyes angrily at the photo.

Ah-ha! Now we know for sure that the character is angry for a reason the author will soon show. There’s no doubt about the emotion. The author told us and she knows her characters well.

Unfortunately, real life doesn’t have authors writing clarifying descriptions for me.

I’ve always thought of books as working backwards from real life. In books, authors set the scene for context, sprinkle in descriptive clues and reveal the feelings. In real life, we see the feelings, struggle to decide between red herrings and real clues, and then need to work out the context (which sometimes remains unknown). Real life can be a real mystery.

So how do I know what someone is feeling if I don’t rely on facial expressions?

Evidence, my dear Watson.

I examine the evidence available. I notice the person’s stance, eye gaze, body placement, stated cultural background and language. Are there other people in the room? Where are those people placed? Is the overall vibe positive or negative?

If the person I’m with is an acquaintance or friend, I gather all this evidence and run it through tests: What did the person say before this moment? How did they say it: rushed, slow, hesitating? Is this a normal speech pattern? If not, what’s changed? Is this a normal topic for them to discuss? If not, what’s changed?

If communicating by text with a friend, I check the textual information. Is the message all caps, all lowercase, properly capitalized at the start of sentences? Is that normal? If not, what’s changed? What happened before we started communicating? Has it been a long time since we talked and I need to update my mental database?

My mental database keeps a lot of information on people. Even I’m unsure how much information it contains. It runs in the background and updates me with working hypotheses. The longer I know someone and the more information in my database, the more accurate I am. With my husband, I have a 99.99% accuracy rate (so far) knowing whether a one word text means he’s busy at work or upset. I know the difference between a normal text and one that tries to hide a day going badly.

But even with strangers ahead of me in line at the store, I can read their character, which I will immediately discard as speculation because we all know to “Never judge a book by it’s cover.” And then the stranger begins interacting with someone ahead and…somehow I was right. Or I scroll past a post on social media from an old acquaintance I haven’t seen in years, then scroll back up, concerned suddenly but dismiss it for a lack of concrete evidence. And then later a mutual friend updates me about the old acquaintance’s new concerning situation. I’m not surprised but I can’t explain exactly what information led me to be concerned.

(My database doesn’t yet support conversion into words.)

So if you stand in front of me feeling complicated feelings, I will be busy gathering evidence and may not see your facial expressions. But next week, when you reveal big news, I will have already figured out a quarter of it and pieced together the rest by the time you are halfway done talking.

Of course, I wouldn’t have to do all this work if people just told me what they’re (honestly) feeling when asked and then (honestly) explain why.

So it’s up to you: do we want to do this the easy way or the hard way?

Do I wish I knew that I was autistic as a child? That’s a hard question for this black woman to answer

Originally published on Medium

I met up with family this past fall who hasn’t seen me since I was a little girl. Interacting with them, I noticed some neurodivergent traits. The possibility was confirmed when I found out one of my little cousins is officially diagnosed with ADHD.

When I met him, I could tell right away because we’re so similar: he’s a picky eater (we have similar favorite foods!), he likes to make random noises, and he jumped up and down every few seconds while sitting on the floor. I wanted to join him in his wiggles but I settled for (hopefully) subtly swinging my legs back and forth. My great-aunt called at him from her comfy chair to sit down and asked “Why couldn’t he keep sitting like everyone else?”

I winced. Because he has ADHD I wanted to say. But I didn’t know how to do that without being rude. You don’t talk back to your older relatives like that. Especially not to ones who last saw you as a little girl in hair ribbons and probably still think of you as one.

And that’s partly the reason why I’m not sure it would matter if I was diagnosed autistic as a little kid. No one fully understands autism, especially back then, and being black and female complicates things.

As a black girl, I learned to not talk back to adults, to not really talk at all around them. They didn’t seem to want to hear us kids. The only way to get heard was to talk louder and talk more and even that wasn’t a 100% guaranteed method. My little sisters could but I never figured out how and copying them didn’t work for me so I stuck to being quiet. This meant no one knew how much trouble I had expressing myself, especially as I got older. I didn’t know how to share the trouble I was having socially. And as a young person, I couldn’t ask questions and get the explanations I needed.

(“Because I said so” is not a reason, okay? It’s rude; kids are human, too.)

No one seemed to notice any of that. I was smart and doing well in school, so I had to be doing okay, right?

Did anyone pick up on my autism as a child? I was usually one of the few black kids in my classes so this obvious difference could explain away any odd behaviors. Interestingly, my one bullying experience was from the only other little black girls in my 4th grade class. Could they tell that something else made me different?

It’s possible an elementary school teacher noticed something too. She brought an event to my mom’s attention after a school assembly: I didn’t speak to a little girl. (My little kid memory is fuzzy so I don’t recall exactly what happened.) My mom pushed back that this wasn’t an actual situation so it was dropped. At the time I was relieved my mom stuck up for me (one of her often-used strengths: defending her daughters against unfairness). Looking back now, I wonder why this particular incident pushed my teacher to say something. Did she notice my autistic traits and want to get me some help? Who knows.

And if that was her goal, it might not have helped me.

Autism was and still is mostly seen as a mental health or intelligence issue. That label could have affected how people saw and treated me. I’m sure my mom would have fought against that outcome. To her and other adults, I would still be seen as shy, as needing to just try harder. And remember, I inherited autism from someone in my family so why would they consider my behavior weird?

I wonder: How many of us are black with no idea of our neurodivergence because our family members are also undiagnosed and didn’t notice anything odd, because they didn’t have the luxury to relax enough to notice there’s another reason why life is so hard?

When I saw my little cousin trying to stop jumping up and down during my visit, I wished he could wiggle around as much as he wanted to when visiting his grandma. And I recognized myself in his grandma, the version of myself before being diagnosed, always monitoring me and my sisters’ behavior and how we appeared to others, making sure we acted how we were “supposed to” even in the privacy of home.

We were all so alike.

So do I wish I was diagnosed earlier? I don’t know.

I don’t care anymore, honestly. I’m just glad I have the privilege to know now.

The struggle to converse as an undiagnosed autistic teen: The oppressive nature of expectant silence

Originally published on Medium

This was a familiar situation while growing up.

I sit on the passenger side of the car and watch the road outside the window: gas station, dollar store, house, house, house.

It’s been a minute and no one has said anything. That’s okay, begins my inner pep talk. You still have a few minutes before this begins to feel awkward. Enjoy the silence.

My inner realist can’t help chiming in. Umm, if you don’t start talking soon, you won’t be able to say anything this whole morning.

The inner pep talk tries to take back control. No, it’s okay. Just relax and enjoy the silence and then when you feel ready, say something.

I glance over at the woman from my church driving the car and then quickly gaze out the window again like I haven’t seen this same stretch of the city multiple times this month. I widen my eyes in feigned fascination as I figure out what to say before my throat refuses to make any sound at all. I have about 5 minutes before the heavy silence pushes my throat closed and it refuses to make a sound.

My inner pep talk tries to help me relax. Remember, you don’t have to talk. It’s okay if you don’t.

The inner realist seems to snort, if that’s possible. Suure, and no one in this car is waiting for you to say at least How are you? Because you sat down without a word, remember? That’s totally weird. And rude. You should at least ask a question. I think so too, but all my prepared questions flee my brain as soon as I reach for them. There’s nothing there.

I feel the car slowing down. We are arriving at our destination where I will have to work with the woman for the next hour or two until we take a break and meet back up with the rest of our group.

My inner pep talk is quiet as I try not to panic. Too much time has passed without me speaking and now my throat is tight. Can I say something before it’s too late? Come on come on comeoncomeoncomeon…

I smile and force out “It feels so good outside today.”

My inner pep talk and inner realist scream Omg thank goodness! in agreement for once today.

I sigh. Yes, thank goodness it wasn’t too late.

But why does this have to be so hard?