What’s so familiar about the phrase “You don’t look autistic”: And why it doesn’t bother me (much)

Originally published on Medium

When I first dove into the online autistic community, one phrase kept popping up as other people’s typical response to being diagnosed as autistic later in life: “ You don’t seem autistic.”

Well, I didn’t get this response very often.

True, I got some awkward pauses or a mention of an autistic young nephew but it wasn’t always said using this particular set of words. But I do understand the irritation and offense this phrase causes because I have heard another similar phrase said to and about me: “You don’t act black.”

Like “You don’t look autistic,” this phrase comes in different flavors like being called an “Oreo” or overhearing a black beautician tell my mom her daughters “talk white”.

But I don’t get offended by these phrases. I just wish people would explicitly say what they mean instead of using this too-broad generalization.

As a kid, I used to think the phrase “You don’t act black” was a compliment. I thought the person meant “You don’t act like the black people I see on mid-90s to 2000s TV.” Because it was true, I didn’t act like those characters. Those shows weren’t my reality. (I mean, who actually acts like the people on TV?)

But then I later realized those people weren’t using the same definitions I was. What they meant was “I think all black people act a certain way and you don’t act that way”. The phrase “You don’t act [insert a group of people here]” implies there is a limited definition to define members of that group. Only one way to be black. Only one way to be autistic.

But that’s not true.

I am black because I am black. My skin doesn’t have to be a certain color. My hair doesn’t have to be a certain texture. My speech or clothes or music taste doesn’t have to be a certain way.

I am autistic because I am. Because I fit a range of characteristics that leave room for a wide variety of individuals. (Interestingly, this is likely the reason I talk differently. The way my autism and being black interact with each other is fun to try and untangle.)

So if you haven’t learned this handy phrase yet, I’ll share it now: If you’ve met one autistic person, you’ve met one autistic person.

Apply this to any group of people. And when in doubt, ask a genuinely curious question instead of making a sweeping assumption. I will not be offended if you ask if I like fried chicken or trains as long as you listen to the detailed answer.

How instant messaging was easier for my autistic brain: A lesson learned from the Millenial IM days

Originally published on Medium

A new text notification pops up on my phone screen and I freeze.

Someone I don’t really talk to in person wants to know how I’m doing. I appreciate the thought and reply back while my brain calculates how much time and energy I need to put into this text conversation. Wait, no, let’s call it a text exchange. Is this text exchange a simple “What’s up?” interaction or is a more in-depth back-and-forth appropriate?

After a few more texts, it seems like a “What’s up” interaction (the texting equivalent of small talk) and I pause, not sure what to do next. Is this the last text? No, they replied back. Do I reply again? Sure. Okay, it’s been a while with no reply — never mind, they just answered. Should I take longer to reply too? Or is this how the conversation ends?

My brain finally reminds me that I was in the middle of something before all this texting. So I stop answering and feel guilty the rest of the day for leaving them hanging.

Or did they want me to stop answering?

I can’t stop trying to figure it out.

The ability to be in touch all the time has the disadvantage of knowing that someone can be in touch at any moment. My phone can go anywhere I go. I can text anyone anytime. Seems great for keeping in touch with people, right? At anytime I can get a text from someone. At anytime they can read my reply and answer back. No scheduling or plan necessary.

See the issue for this autistic woman?

The ability to be in touch all the time has the disadvantage of knowing that someone can be in touch at any moment.

Each time I experience this paradox, I recall the days of Instant Messaging (IM). I know that technically IM still exists with apps like Google Hangout but I’m referring to a specific time period. Back when I was a kid and cell phones did exist but not everyone had one. And even when we did get access to a cellphone, phone plans limited text messages (like mobile data is now). Paying per text kept text exchanges short. Most of my fellow students had computer and internet access so instead, we IMed on apps like Yahoo Messenger or AIM.

Starting an IM conversation looked like this:

I access the internet using a computer, usually at the library or at someone else’s house (until my family got our own computer and internet connection). Then, I log on to IM and let my status show I’m available to talk. I search for any available friends. Found one! I open a new chat, send a greeting, and the conversation starts. When one of us has to go, either for a break or to completely log off, we warn each other with a “brb” or “g2g” so no one is waiting around for a reply. Sometimes we schedule our next IM session for the next time we can use the computer.

And that was my IM routine. IMing had a definite beginning and end. Once I stopped using the computer, the conversation had to end. The computer didn’t go with me when I stood up and left.

The conversation ended.

It was done.

A new conversation required a little more planning than simply pulling a phone out of a pocket.

I don’t know how to recreate this experience. I don’t know if I want to recreate it. Maybe it’s better to leave it as a memory to recall after a particularly frustrating text exchange that makes me wish I could work up the nerve to just call people instead of relying on texts.

Not every weekend has to be exciting: The danger of the question “Anything exciting happen?”

Originally published on Medium

As an ASL interpreter for college classes, I watched multiple professors interact with students and noticed they often used words like “exciting” when asking about how students spent their free time. This story is inspired by the ones who replied “Nothing.”

The professor opens the evening college class with a chipper “How was your weekend?” A student in the bottom left corner of the Zoom gallery screen smiles, remembering Saturday’s long walk through the local park, warm sun shining, feeling good for the first time in a long while with no homework to worry about.

The professor adds “Anything exciting happen?”

The student frowns and reexamines the memory for any exciting elements.

Is a walk exciting? Possibly. But not a walk through a regular local park. Maybe one in the mountains is.

Is the warm sun shining exciting? Not really. It’s a pretty basic occurrence in the southern states of the USA.

Is feeling good exciting? Maybe if the feeling was great or awesome but not just good.

And anything to do with homework is never exciting, no need to even ask.

One by one the other students offer up a short rendition of an exciting weekend while, for one reason after another, the student in the bottom left corner of the Zoom rejects sharing a fond memory.

It’s their turn now. “What about you?”

The student shrugs and says “No, nothing exciting.”

Surprise Reaction to a Surprise Party: Spoiler - Please don’t do it

Originally published on Medium

“Surprise!”

I look around

Smiling face smiling face smiling face
(oh my smile is off, turn it on!)
All eyes on me
expecting…

What?
(just keep smiling)

Overwhelmed by the underwhelm
this isn’t like the books say like the movies show

And no best friend character a someone to ask
“Do you like surprise parties?”

and listen to me think
to honestly answer
“I don’t know. Please don’t have one.”

How my natural hair prepared me for my Autism diagnosis: And taught me that online communities are all the same

Originally published on Medium

I spent most of my life not knowing the most basic thing about myself: my actual hair texture. The decision to change that changed my life.

But back then, standing at the kitchen sink with a bottle of V05 conditioner in one hand, I wondered “Will this help or ruin my hair?”

My mom was uncertain that “white people conditioner” would work on my Black hair. She was definitely sure that not getting relaxers anymore was a sure path to broken hair because that’s what she had learned growing up.

I wasn’t sure if she was right or wrong. I really feared my hair would fall out. But I was so dissatisfied with my hair that something needed to change.

Since elementary school, I struggled to grow my hair. It stayed chin length for years before straggling to barely shoulder-length that a hairdresser traumatically chopped off in the name of Trims just in time for the horrible cut to be immortalized in my high school pictures. (I cried that day and I don’t cry easily.) I tried everything to grow my hair. I massaged my scalp regularly, took vitamins, did hair treatments, even prayed nightly.

Nothing worked until I went to the internet to question the very foundation of what I grew up learning about Black hair care: it needs to be straightened. What if it didn’t?

In those early Internet forums and YouTube videos, I found the early Natural Hair community. I learned so much from what those women shared and spent hours soaking it all in when I should’ve been sleeping to be up early for school the next day. (Thank you, hyperfocus) And I soaked in more than knowledge. People had a LOT of opinions:

You should never straighten your hair. Celebrate natural hair’s versatility; it can be straight and long one day then kinky and short the next! You should style your hair everyday. No, not everyday, that’s damaging. Do it every month and never wear it loose if you want it to grow.

Never let your hair shrink; always stretch it out. Shrinkage is healthy and beautiful; don’t fight it. Black hair is always kinky, not curly. If your hair is straight, it’s damaged. Some Black hair is naturally straight. If your hair doesn’t curl, it’s dehydrated. It never curls unless you’re mixed. Ethnically Black hair can be naturally curly.

So

many

opinions.

I became a “Natural Hair Nazi” based on my research. I viewed relaxers and straightening hair to shampoo commercial silky-smooth as bad and damaging. It was all bad. And if you kept doing it, you were bad, too. I judged them. The J in my INTJ was overactive.

Years passed and what worked for me wasn’t necessarily what the Natural Hair articles recommended. So I stopped listening to them and listened to what worked for me. And I realized I had left one hair belief system (straight hair good, kinky curly unacceptable) for another one. Uh-oh. I mentally apologized to the people I had silently judged so much.

And then about 10 years later, I learned another basic fact about myself: I’m autistic. My brain does not work the way I’d been taught my whole life. I dived deep into the internet world of the Autistic community and, after hours and days of reading, started to notice some similarities.

So

many

opinions.

Experts with their views. Parents with their views. #ActuallyAutistic people with their views.

The J in my INTJ was triggered. There was so much to judge people about!

But I didn’t want to go back to that. I had learned that the world really isn’t black and white. There’s so much gray. And out of that gray, I finally grew my hair longer than I could ever imagine. (Not that it’s obvious because I like my hair’s shrinkage.)

We’re all humans.

We’re at different places in our healing journey.

And thanks to my natural hair journey, I arrived on the other side of obsessive research and dogmatism in one positive piece.

Journal entries from an undiagnosed autistic girl: Part 3 - The struggle to answer the question “Why am I so weird?”

Originally published on Medium

This is part 3 in a series where I share entries from the journal I kept while growing up. It’s something nice to look back on when I start to wonder if I’m feeling too happy to actually be autistic.

I already wrote about my struggle with eye contact and interacting with people. Now, I’ll share my search to figure out why I felt so, well, weird while growing up.

Note: These entries will be abridged and only the relevant parts included because I tended to write long journal entries.

December 2, 2009

I read about social anxiety and voila! There it was: me. I thought I was strange! (Well I am, but explained in a clinical way, I don’t seem to be strange.)…[I discuss my issues with eye contact and dislike of small talk] So. Idk. Do I have social anxiety? Or is it just shyness?

Feb 11, 2012

I found my personality trail! Remember I wrote about wanting to find my own personality? For the longest I kept trying to imitate the traits I liked in other people so I was really confused and felt off whenever I did because it never felt right. Like I was wearing the pretty, fancy ball gown that all the fashion magazines said would make me more stylish but still felt blah.

So I stopped. I felt boring, but I stopped. And just reacted to see how I would do it. Then I read about introversion and that really helped. And I found pieces of me floating round that I knew were me but never really fit anywhere. Like sometimes just needing to get away from people for a bit.

Another discovery: I do better socially when interaction is based around a goal of helping someone else/cooperating with others. So focused group projects aren’t totally heinous activities. (Key word: Focused)

I don’t like things to not have a point. It gets on my nerves. Yet I do like unplanned social time/hanging out (as long as it isn’t too much & doesn’t interfere with other necessary activities).

Oh. And I am bad at narration (verbally). On paper I can be excellent.

Silence doesn’t scare me. Nope. Think I like it too much. A veces I have to snap myself out of it and return to the world of talking and thinking.

I like listening to other people’s convos, analyzing people and their motives (but not of celebrities or famous people. I don’t know them.)

I like organizing. Lists. Helping plan stuff. Being given a problem and what the person wants fixed (need specific parameters) and finding a solution.

June 23, 2016

Crowds of people cause tunnel vision — I must focus on a few sensations to shut all others out. Light, colors, noise are filtered. Familiar place? I breathe easier. One less thing to filter. Familiar people? More breathing. Familiarity breathes calm into my overloaded system.

New place? New people? New way to interact? Newnewnewnew….

Can’t see, can’t breathe, can’t think. Must escape, sit down, shut down. Wrong place/time, so stressful. No breathing.

In 2021 I finally got the answer to why I felt so strange: I’m autistic.

My current journal entries are different now that I’m no longer constantly searching for answers to my eye contact and social interaction questions. Instead, I focus on what works and doesn’t work for me, what gives me energy and what takes it away.

Wondering whether I’m actually autistic just because I feel happy and full of life 3 days in a row?

That takes energy away.

Simply enjoying this new feeling of being happy 3 days in a row?

That’s an energy boost.

Journal entries from an undiagnosed autistic girl: Part 2 - The struggle with people interaction

Originally published on Medium

This is part 2 in a series where I share entries from the journal I kept while growing up. It’s nice to look back on old journal entries when I start to wonder if I’m feeling too happy to actually be autistic.

I already wrote about my struggle with eye contact. This post will focus on my ongoing struggle to interact with people.

Note: These entries will be abridged and only the relevant parts included because I tended to write long journal entries.

December 1, 2009

…And I am afraid I don’t know when to leave. I always try to leave a conversation early before anyone gets truly annoyed with me. Or really bored. And it’s usually an awkward exit so the person prolly thinks I don’t like them and couldn’t wait to leave. Which isn‘t true.

December 2, 2009

“Small talk“ is horrible for me. I don’t like it. Checkout counters, library, store, food place- all make me nervous b/c I think I’m expected to make “small talk”. But I don’t know how. And once I avoided doing an extra credit assignment this semester because I was too anxious — it involved talking to a few strangers at a career fair. I just couldn’t do it. I walked around meaning to go, trying to get up the courage….and then didn’t go. Silly, yes.

December 25, 2009

I missed saying “hello” to about 4 people today because I was scared to. And I didn’t really think it would matter because people don’t seem to notice whether I say hi or not anyways. I just slip in and out of conversations… Except, what if they think I’m being, I don’t know, snobby?

April 24, 2010

Ouch, I’m mean. Ugh. I hate that. This is another reason I don’t like opening my mouth too much, I can be mean without thinking about it. And I don’t realize how bad something sounds until it’s too late. And it’s not majorly mean stuff, but it’s still nonreturnable.

December 7, 2011

I think my thorn in the side is people. In this time I might never turn into a people person or ever really feel comfortable around them or be skilled at talking to them. That’s my problem.

Doesn’t mean I’ll stop trying, tho.

January 11, 2014

How am I supposed to have any real fun if I’m always working working working on people interaction???

Does it ever get fun????? Am I being overdramatic?

I suppose it could be worse but is it wrong to wish for better?

April 1, 2014

One-on-one with all but a few people, I freeze. I can talk yes, but it really doesn’t flow. Even at my best. It bothers me because I want to be the person with friends to just hang out with but when I do hang, I can’t wait to go home…The socializing one-on-one is super stressing…

Maybe if I do it over and over it will get easier tho.

December 5, 2017

Yesterday I discovered (rediscovered?) how I still don’t know much about socializing. Like, where does a conversation go when there’s no point? Is it a mercy to kill it eventually?

These journal entries give me further proof that no, autism isn’t something I decided I had after being on social media. This is an issue I’ve dealt with for a long time.

But if I need still more evidence, there’s my life-long research to figure out “Why am I so weird?” Read about it in the last part of this 3 part series.

Journal entries from an undiagnosed autistic girl: Part 1 - The struggle with eye contact

Originally published on Medium

When I’ve been having multiple days in a row of honoring my needs and routines, I feel great. Relaxed. Happy.

Then I start to wonder: Am I really autistic? Was it really that bad before knowing or did I exaggerate?

And I have a conflicted feeling of needing to be miserable to prove that ‘Yes, I am autistic’ because I’ve only ever heard of miserable autistic people in popular media and in eavesdropped conversations. As if misery is a required part of the autistic personality and not the outcome of various internal and external factors.

Thankfully, my past self kept an excruciatingly detailed record of my inner thoughts that I can turn to in moments like this.

I present to you the journal of an undiagnosed autistic teenager-turned-young adult.

I’ll share what I wrote about one of the most well-known symptoms of autism — struggling with eye contact.

In my next articles, I’ll share entries about other symptoms: the struggle to interact with people and my lifelong search to figure out why I felt so different from everyone else.

Note: These entries will be abridged and only the relevant parts included because I tended to write long journal entries.

Dec 1 2009

I looked up ‘compliments’, ‘eye contact’, and ‘conversation’ (again) and reviewed articles on shyness. Yes, reviewed. I’ve been too lazy to really try to follow them. Shame on me, yes. Now, though, I really will try.

I am afraid of eye contact. I’m not sure how to negotiate the business of making eye contact unawkwardly and keeping it and releasing it.

December 2, 2009

Eye contact is hard. It makes me nervous. I remember having trouble with it (about 4 or 5 years ago).

April 7, 2010

Yesterday, I thought long and hard about my social problem and came up with this: I don’t really try… I am socially lazy. It doesn’t help that I really don’t like talking that much, either… So I’m going to need to work on things a step at a time. First, I’ll start with eye contact. I’ll write a question about it, research, and write my results and comments in here.

Question 1: What is eye contact and how can it be managed successfully?

After rereading these entries, I realized how often I put myself down. How often I said I didn’t try enough, that I needed to try harder. I send past me so much love because I tried SO HARD. I didn’t realize how much effort I was putting into something other people just did without thinking about it.

And I also feel validated that no, autism isn’t something I exaggerated or a problem I invented. This is an issue I’ve dealt with for a long time.

But on the days I need more evidence, there’s my life-long struggle to interact with other people. Read about it in Part 2 of this 3 part series.

6 Reasons the Geek Girl Series is My Comfort Read: Why the story of an undiagnosed female autistic main character matters to me

Originally published on Medium

I recently recommended the Geek Girl series by Holly Smale to a friend and, after checking out the synopsis, she was confused.

“It doesn’t seem like your type of book,” she explained.

Which made sense. My earlier recommendation for this same friend was a nonfiction history about the dangerous effect of radium on factory girls during World War 1.

A book about a teenage girl that’s chosen to be a model seems out of place.

So let’s go back to 2021.

I had just learned that I was autistic for the first time. I had started deconstructing my whole life. I was reading depressing statistics about autistic adults and sad memoirs. I needed a positive distraction.

And then I came across an article in one of the many autism subreddits I joined at the time that mentioned a British author Holly Smale getting an autism diagnosis as an adult. And she mentioned that her Geek Girl series main character, Harriet, was based on her own experiences. Which meant Harriet was also an undiagnosed autistic female main character.

I had to read it.

I read the sample on Kindle and loved it. But I couldn’t find it in my local library and it wasn’t available in my e-library. I wanted it now so I bought the Kindle ebook. And then I bought the next one and the next one and the next until I had read all 6 books in my Kindle library.

I recently reread the series again and was instantly reminded why the Geek Girl world was (and still is) the perfect comfort series for me.

1) The Main Character’s family is always on her side

YA books have this common trope of the family not understanding the Main Character. I identify with those stories, of course, but does every story have to be like that?

Harriet’s family feels like a real family — nobody is perfect, they get tired and upset and say things they don’t mean. But at the end of the day, they are always on Harriet’s side. Always. She doesn’t always go to them for help, but when she finally does, the situation is resolved in a way she never could’ve predicted. I need to see examples of functional families like this.

2) The best friendship is goals

I can’t count how many books I read where the Main Character is a loner but somehow has a best friend and the friendship is never explained. It just happened, no effort required.

For someone looking for friendship tips in books, this is no help at all.

In the Geek Girl series, Harriet’s best friend Nat is not like Harriet at all. They have different interests and families and looks. But Nat understands Harriet and they choose each other as friends over and over. I can see that friendship is a relationship that needs to be nurtured.

3) The plot is based on real life

I like my fiction to have some basis in reality. While I have no idea how much of the story is based on real events, the author was recruited as a model at 15 like Harriet.

4) The romantic relationship is healthy

Yes to the healthy romantic relationship! I don’t want to give away any spoilers in case you read the books yourself.

I’ll just say the love interest likes Harriet for who she really is. Not for how she can make his life better and rescue him. And he doesn’t need to rescue her from her sad life because he’s the only one who understands her. *shakes fist at this romantic YA trope*

When they have miscommunications, he doesn’t go off and sulk or revenge date but actually realizes his role in the problem, admits it, and they talk it out.

5) The Main Character is proud to be herself

This is not a 90s rom-com movie makeover plot.

Even when bullied for being a geek, Harriet doesn’t want to change herself to be more popular. She likes herself just fine. She just tries to change her life and hope that will change how others see her.

The only makeover scenes are temporary, just for her modeling jobs. Harriet dresses for comfort and practicality. Her modeling agent Wilbur even praises her clothing choices and dislikes when she tries to “dress like a model” outside of jobs.

6) The books are full of random, interesting facts.

I can enjoy a good story AND learn random facts. And the way Harriet uses random facts as metaphors for how she’s feeling is just what I do, too.

I don’t expect everyone to like this series as much as I do but do I hope my reasons made sense to you.

Now, excuse me while I finish up the Geek Girl special stories.

Read my thoughts on the Netflix TV series Geek Girl compared to the book series here:

This autistic woman’s thoughts on the Geek Girl Netflix show