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

3 ways I make grocery shopping work for me as an autistic woman: Because I don’t want to stop grocery shopping even though it’s hard

Originally published on Medium

After a grocery shopping trip, I like nothing more than to lie down on my living room floor and relax from the trip. I let myself feel the stress and release it.

Because grocery shopping is a challenge.

And I like challenges.

I sill remember my first grocery shopping trip with my own money. I went to Kroger with a list of ingredients from internet recipes. I thought I was prepared. By the end, my cart looked kind of empty but my running tally of the cost was getting too high. Something wasn’t right.

So I did what any good student does: I researched how to grocery shop. (I don’t remember what articles I found back then but here’s a recent one with excellent tips) After my research, I went back and eventually figured out what works for me.

Grocery-shopping is the one errand for the day

For a short period of time, I tried to “do all the errands” in one day. That included grocery shopping and going to the laundromat. I noticed how tired I got after but I thought that’s what it took to Get Everything Done. America runs on coffee after all, right?

I complained to my husband about it and he commented “Don’t do it on the same day.” And my first reaction was “I have to!” and then the next thought was “Can I?”

I could. I stopped trying to be like everyone else and my energy levels and mood improved. Even with a washing machine at home now, I still need to do these errands on separate days. Even with Instacart (thank you pandemic for forcing me to try this!), I still need to do them on separate days.

It’s what works for me.

Grocery-shopping during slow times

I don’t go grocery shopping on the weekends or after 4:30 PM because that’s when everyone else usually goes. I have the option to go earlier in the day so I do it on the weeks that I don’t use grocery pickup or delivery.

Grocery shopping with a weekly list and Often Used items list

I like to be in and out of the store quickly so having a list is essential. I don’t go to the store multiple times in a week, so I can’t risk forgetting to buy anything. I also keep a daily whiteboard list of items that are running low as a reminder to add them to the grocery list.

I also keep a spreadsheet of kitchen staples that reminds me of the things that I don’t buy regularly. Both of these lists give me that big picture and little picture view I need.

These are the main tips that help me to still enjoy doing the grocery shopping myself.

Why this autistic woman likes to go grocery shopping: Even though the trip tires me out more than 2 hours of dancing

Originally published on Medium

Why do I like grocery shopping when it’s so tiring?

I like knowing where things are.

I like walking into a store and knowing exactly where find things. Most stores have similar setups and it feels like I solved a challenge walking into a new store, hypothesizing where the lettuce is and being right. It’s like a personal game show.

I like planning exactly where to go

I make my list in order of where I will go. It feels like planning an elaborate heist and executing it perfectly. Bonus points for the grocery total being less than I estimated.

I like making my grocery list and categorizing each item in the right category.

I’ve settled on Vegetables, Fruits, and Other as category headings after experimenting with different ones before. It’s just enough level of detail without being too detailed.

I like seeing what’s new.

I prefer to shop at small grocery stores like Sprouts or Aldis. The space is small and has less people. It’s easy to roam the inner aisles and see what’s new on the shelves for gluten-free and other specialty products.

I like how the store feels during non-peak hours

I’ve always worked freelance or part-time so my schedule allows me to go to the store during slow times. There’s less people there and I can walk the aisles as fast or slow as needed and not worry about bumping into people or blocking their way. The store feels friendlier when it’s emptier and the lines are shorter so I don’t get as tired.

I now use Instacart sometimes to save my energy during busy weeks and it does help but comes with its own stressors. Like other people choosing brown lettuce for me because they don’t know how to pick fresh produce. True story.

(I may or may not be that person that leaves instructions in the chat on how to pick produce. Just in case. Why test my flexibility skills past their stretching point?)

The party that made me love parties: How I exchanged reading books in the corner for a spot on the dance floor

Originally published on Medium

If you attended a party with me before This Party, you would notice a book in my hand.

(Sometimes I had 2 in case I got bored of one and wanted to switch.)

You might ask “Why do you have a book?” and my honest answer would be “Because it’s boring to just sit around and eat. Plus I never know how long my family will stay before we can go.”

But then I was invited to a Hispanic graduation party with my sisters and this changed.

(I literally separate my party-going life as Before This Party and After This Party.)

At This Party, more than 300 people filled a large rec center that I would come to know very well. My sisters and I were invited by the graduation girl herself who we met doing volunteer work on a construction site. She was really nice and friendly so we decided to go. Plus, there would be dancing and, if you know me, you know I love to dance.

My memory clearly recalls the dimmed and colorful purple lights. I remember getting invited to dance bachata by a guy named Romeo (pronounced in Spanish). I didn’t know how so he taught me the basic steps. This repeated for each new dance partner and song. They taught me and we danced.

Not once did I get bored or wish I was reading a book.

After that, I was hooked. Fortunately, that invite led to an invite to someone else’s party which led to another and another as we met more people. I learned bachata, merengue, cumbia, salsa, duranguense, and new line dances. I went to baby showers and learned those could actually be fun too. Both the parents-to-be were there and people danced.

So you’re reading this and thinking “Okay, so you got to dance but what about the other stuff that’s hard for you? All the people? The groups? The noise?” Good questions.

Those didn’t bother me too much because I always knew what to expect at each party. There weren’t really any surprises. I knew the schedule and the social expectations before going.

The schedule

Before each party, the invite explained

• the time food was served

• the time dancing started and ended

• the style of dress

That meant we could plan to arrive early for food or come later just to dance. The order of events was the same at each party: dinner, dancing starts, cake/dessert, more dancing. It was typical to leave early after the cake was cut but it wasn’t impolite to leave even earlier.

Social expectations

If we came on time for dinner, I knew that first we would come in and leave our gift at the gift table. Then find somewhere to sit and say hi to anyone that we knew on the way. This included a handshake, hug or a cheek-kiss depending on who we greeted. Then we sat down and waited for the dancing to start. If we sat with other people, we could talk to them but we didn’t have to.

If we arrived late just to dance, I knew that we could skip a lot of hellos because lots of people would be dancing. This time we could get away with adding the gift to the gift table and then going directly to sit down and say hello to people we already knew.

For dancing, I had a script for new partners.

• What’s your name?

• Where are you from?

• How do you know [party host’s name]?

• Ask about likes/dislikes

And that was enough because we were busy dancing! If I didn’t want to keep talking, it was fine. I did worry sometimes about being boring but it never seemed to be a problem with the people who were as crazy about dancing as I was. And eventually, I ended up at the same gatherings multiple times with the same people so we continued past conversations and became party friends.

And when I wasn’t dancing? I watched the dancers to pick up new moves or sang along to the songs.

The pressure to talk? Eased.

I could move. I wasn’t stuck in one chair the whole time.

And the food was amazing!

I’m not saying the parties were perfect. I still masked to fit in with my hair and clothes and still got overwhelmed. But for the first time, I felt capable at a party and that confidence carried over to other gatherings I attended. I learned to navigate those events in a positive way.

And I didn’t have to bring a book with me everywhere I went.

(But I still had one on my phone. Just in case.)

6 Benefits of learning a new language as an autistic person: When communication struggles are an advantage

Originally published on Medium

Languages are the puzzle I can’t stop trying to solve.

I took Spanish for 7 years in middle- and high-school then ASL for 3 years in college. I scoured bookstores for Swahili dictionaries after meeting a family from the Congo. I tried to teach myself Chinese for fun one summer.

Languages are my interest.

After finding out I’m autistic, I realized the language-learning process actually helped me out all those years as an undiagnosed autistic kid and teen. Here’s a few benefits I’ve noticed.

1. I have a built-in excuse for being unsure of how to respond in conversation and for my slow processing skills.

New language learners aren’t expected to speak fluently, correctly, or understand immediately. I can take my time when answering and use the important phrase “I don’t understand.” There’s no stigma! It’s expected when learning a new language. Also, many people are glad I’ve taken the time to learn their language, even if it’s just a few words.

2. Memorizing appropriate answers to common greetings is normalized.

This is perfectly acceptable when learning a new language. Greeting rituals don’t always make sense when translated directly; they just are. Many autistic people script their future conversations and are already familiar with this concept.

3. It’s not odd when I take things literally or behave differently.

Learning a new language and culture means making mistakes. Most non-native English-speakers know this. When I show respect to them, they might laugh at first (because mistakes can be funny) and then will kindly explain what went wrong and help me out.

4. Educating myself on cultural norms is appreciated.

Each language comes with its own set of cultural expectations and norms to learn. Many monolingual Americans are surprised to discover language and cultural rules vary from place to place, from group to group but this never surprised me. It made complete sense and I memorized it the same way I memorized my own American and Southern cultural norms. And people noticed and acknowledged my efforts as showing respect for their culture.

5. People aren’t surprised when I’m quiet in group conversations.

When I sit quietly during group conversations, people assume I don’t understand what is going on and leave me in peace. Some will even kindly translate the conversation for me. Even better, they might slow down the conversation flow so I get a chance to say something.

6. A new language is a good way to try out different personalities.

Research has shown that people feel like they change personalities when they speak a different language. Why? Each culture views the world from a its own perspective and that’s embedded in the language. Learning a new language forces us to think differently. For a while, I felt like I had lost my personality so I could try out new ones with different groups of people. In ASL, I became more expressive. In Spanish, I was more direct.

Underneath the mask: When you can’t feel the fun in the moment, was it actually fun?

Originally published on Medium

Did I have fun?

Well I was out of my house on a Saturday with people my age.

It was past 6 pm. And we went to the square downtown where I know lots of people usually go to hang out on weekend nights. We ate tacos at a Tex-mex restaurant and laughed a lot. People kept looking at us and smiling like “Look at those young people socialize.” We must have looked like lots of fun.

So yeah, I guess they had fun.

Oh wait.

You asked if I had fun…

Hey, so weird question for you.

Do you just, like, feel that you had fun? Like you just get a feeling and know you had fun?

You do.

Huh.

Do I?

Well yeah of course, but for some reason it usually doesn’t involve other people. Other-people-fun requires more thinking to find the fun feeling.

(I’ve said the word ‘fun’ too many times and now it’s lost all meaning.)

The mental program always running in the background: The brain hard at work behind my quiet face

Sorry if you saw me and I didn’t say hi back.

I probably didn’t see you.

I mean, I’m sure my retinas recorded your presence but my brain had its world blocker up.

Oh, you don’t have a world blocker?

Well, it’s like an ad blocker, but instead of blocking ads, it blocks various sensory information from the world (depending on my needs).

Let me explain.

In a Crowded Area Setting

The crowded area setting is one of the strictest. This one lets in the general crowd ambience (because I find that good background noise) but anything more specific — individual words and conversations, the number of people around me, faces, identities — gets blocked out. I process a small circle of space around me, enough to not bump into people while walking (this no-bumping add-on still needs work though; I’ve read the reviews).

So your face in that crowd is just one of many and I need a moment to adjust the setting to recognize individuals.

In My Comfort Zone Setting

The comfortable person/place setting is my favorite but rarely used. It requires the least amount of energy and programming.

Conversation in a Noisy Space Setting

The setting for one-on-one conversation in a restaurant/noisy small space is a popular, often-used feature. The developers are always releasing new updates to reduce persistent bugs like other conversations drowning out the conversation happening in front of me, forcing me to read lips to know what people are saying.

Feeling Uncomfortable Setting

The uncomfortable person/situation setting has been in development for years and needs constant updates. It blocks out distracting sensations like the hot sun burning my skin and my own voice while I’m speaking. It also attempts to minimize my alarm at the possibly-negative facial expressions of others.

Dance Setting

The dance setting is only needed in serious settings. It blocks my automatic dance response to music. It’s not always 100% accurate but good enough. At the boba shop, I keep it at the lowest level. That playlist is way too good not to dance a bit.

Focus Setting

The focus setting may be the most powerful. Countless people have tried to bypass its auditory and visual blocking with no success. With persistence, the security will allow a little of the signal through, enough to lift my head up from my book or project and ask “Huh?”

But the blocker can’t filter out my automatic irritation and confusion from being interrupted, so please be patient.

Why I will keep trying to socialize in groups (even though it’s hard): An AuDHDer’s thoughts on group dynamics

Originally published on Medium

I have a theory. Certain people do not go together in groups.

It’s like coke and Mentos. Enjoy them separately and it tastes nice and refreshing.

But if you put them together? Oh no don’t do that in public where people can get splashed.

And then other groups are like lettuce and soy sauce and fish sauce and red pepper flakes and sugar and garlic and onion and green onion. I see the list and wonder: “What do these ingredients make?”

It makes Sangchu-geotjeori. Korean spicy lettuce salad. Delicious and refreshing with a surprising crunchy mouth-feel. A great random discovery while browsing YouTube one day.

And stumbling into a good group feels like that. A combination of people I never would have thought of on my own. A great random discovery I want to experience again and again.

But usually I am peeking out from the bathroom watching everyone get sprayed with the coke and mentos because I had a feeling this wasn’t a spicy lettuce situation.