A Scary Story: Autistic and Undiagnosed: Social life as an undiagnosed autistic woman

Let me tell you a scary story.

There once was a girl, we’ll call her….Ada. She tried very hard to get along with people. She smiled and asked them questions and listened and paid attention to what they said. But when it was her turn to speak, guess what happened?

No one truly listened to her.

She expressed herself and later people would just ask her the same old questions or just go “Huh?” No one paid attention to her but they said she was great and they liked her and they were all friends.

It gets scarier.

Her friends all had groups. Their family group, their friend group, their study group, their hobby group. So many groups to belong to. Ada learned she must have a group too. And not just one group. It’s sad to only have one! One person must have many, at least.

So she found a group. And then another one and another one and another one…Ada had many many groups. And each group was full of people who said they were all friends. She’d done it. She had groups. She had friends.

But one day Ada didn’t feel well. Her throat hurt and she couldn’t talk. She went a whole day without speaking. Once she got better, she told her friend group how sick she had been. “No way, but you said the funniest thing the other day!” Ada made her eyes smile along with everyone and thought But I didn’t.

The next week she felt unwell again so she stayed home from her weekly study group to rest. The next time she saw the group, everyone was making cards for another member that had gotten sick that day.

“I was sick last week, too,” Ada commented, always looking for connections to others.

“No way! You were here last time,” they insisted and kept on making beautiful cards. Ada pasted a smile on her face and a sticker on a card and thought But I wasn’t.

After that, Ada decided to skip her next hobby group to see if this kept happening, if people kept forgetting her absence and assuming her presence. Was her presence an absence?

The next week, she waited for her hobby group to mention her absence or ask what happened.

Nothing. But maybe they didn’t want to be nosy?

Then another member walked into the room and everyone immediately looked up and asked “Where have you been?? You missed last week and you’re late today.” Ada looked up, an echo of the rest, and thought But I was too.

This is where it gets really scary. Are you ready?

Ada is human. She’s not invisible, she’s not a spirit, she’s not anything except a flesh-and-blood human female. She has a reflection. Light bounces off of her just like everyone else. But nobody sees her.

I told you it was scary.

Ada didn’t know what to do. She’d done so much already to find a group, be a part of one, really put herself in the middle so that the group always included her always. And this is what happened.

What do you think she did?

I’ll wait for you to think about it. Oh, you’re already done? What do you think she did?

That’s a pretty good answer. Well, I’ll tell you what she actually did. She kept going to her groups.

That’s right. She did the social math and calculated that not going would make her more invisible and more forgettable. So. She. Kept. Going. With the same friend group, the same study group, the same hobby group, etc. And nothing ever changed. Even worse, she never figured out that members would see each other outside of the group.

I warned you this was a scary story.

How I navigated social gatherings as an undiagnosed autistic young adult: Join the kid party or eavesdrop on the adults?

Originally published on Medium

Join the kid party or eavesdrop on the adults?

Growing up, this was the decision I faced at each church or family social gathering.

Up into my teens, I managed to do both: run around with the little kids and then sit quietly in the background of adult conversation for a break. And go back out to run around/dance some more when I’d had enough listening and needed to MOVE.

As a kid, I definitely knew how lucky I was to be able to do both. Poor adults! They didn’t like to run around for some reason. OR dance! Just. So. Much. Sitting. Still.

But that was then and this was now.

I looked around the crowded gymnasium dressed up as a graduation party. I sat in a chair at the end of a long table covered in snack food and reluctantly realized I had entered the adult side of parties. I was 21 now. I sat in a chair like the adults. Despite my short height and baby face, I was not a part of the kid group and the only way I could run around with them now was as a super-helicopter babysitter interrupting their fun.

So that option of movement was off the table (figuratively speaking).

What about dancing? Based on past gatherings with this group of people, I doubted there would be dancing. And even if there was, only the little kids would jump on the dance floor. Join them and be the center of attention or stay in the safety of my grown-up person chair?

I watched the little kids crawling underneath tables and smiled. No weather chit-chat for them.

The soda in my hand kept coming up to my mouth to give it something to do.

Uh-oh. Awkward eye contact with an older woman in conversation at the next table. Look away slowly and pretend to be thinking about what cake to eat next. Look at the cake table! Pick a cake and wrinkle my lips, tilt my head like I’m thinking “Hmm, which one?” Success! The woman looks back at her conversation partner and continues talking about something that I somehow am able to still hear from this distance.

Keep smiling.

Just keep smiling.

Hard to know which was worse: drinking soda too slowly to kill time or killing conversation too fast to pass time.

But probably the second one.

I finally figured out that routines are not schedules: Why this autistic person prefers routines to schedules

Originally published on Medium

(I use the word routines a LOT here. Fair warning.)

Growing up, I thought I knew what routines were but I was mistaken. I confused them with its close cousin, schedules, who made me create weekly calendars that I followed for, at most, a semester. Before abandoning my schedule, I always felt organized. I wrote down times to strictly follow. Even free time was scheduled.

And routines ran silently in the background, keeping the day flowing from one class period to the next until I left the school building and headed home. Routines gave my school day structure but I thought schedules were the key.

Eventually, making schedules overwhelmed me. Once school finished, my work schedule changed frequently. I made new calendars to plan out the week but the sight of the multiple time blocks made my stomach clench. All those obligations took up too much space in my day, in my head. I crumpled the pages and threw them away, telling myself “I remember anyway, it’s okay. I don’t need to make a schedule.” (Definitely not true)

I read so many articles about how to make schedules less overwhelming. My research led to YouTubers writing task lists in bullet journals and covering thick planners with stickers. I tried these and started off fine…until it became too much. I was too exhausted from my schedule demands to make my tormentor aesthetically pleasing. It was a lot to write an ever-growing daily task list. I tried apps and also abandoned them after a while.

The few routines I did have continued running in the background, like in the mornings when I decided to make movement a priority. And when my schedule got in the way, changing the place, the activity, or the time of movement, it was okay. Routines could happen earlier or later; they’re flexible that way.

And I slowly figured out why routines are better for me. Getting diagnosed as autistic with ADHD accelerated this understanding process.

I imagine that schedules use time as discrete minutes and hours and days and these fill up too easily when planning activities. But routines use time as sections of life: the morning, the meal, the bedtime. Routines package up so many pointy demands and create one easier-to-handle activity chunk that doesn’t make me want to throw my calendar in the trash.

I can think about “the morning routine” easier than thinking about each separate action that needs to be done in the morning. And if a day is too short a unit of time for a routine, I can use a week. If a week still feels too short (like I’m cramming too much activity into a too small time frame), I can create a monthly routine.

And it’s fine!

Routines work with whatever section of time I can handle.

For example, if cleaning doesn’t fit in my daily routine, it fits in a weekly one. And then I use the routine of putting things back where I found them, and ta-da! Easier to clean home.

Routines don’t require a specific length of time either. If my one-hour movement practice scheduled for the morning feels too overwhelming, I can make it shorter. 5 minutes or 50 minutes doesn’t matter; it’s still part of the routine.

So have I stopped using schedules in my life? No, I will always need them because some obligations have a definite time and deadline. I can’t completely avoid them.

But!

I have easily shortened routines for those days when I wake up late and have to be somewhere at a certain time.

And I have routines for when an unexpected event tears my schedule into unrecognizable minutes and I’m left walking in circles, wondering what to do now. At those times, a routine reminds me what part of the day I’m in and keeps me grounded.

And sometimes I just can’t do anything for a while and my schedule is open, so I lie on the floor reading, content that my evening routine will be ready whenever I am.

(Has the word routines lost all meaning for you now, too?)

I keep missing my turn in the conversation: Conversation turn-taking is tricky

Originally published on Medium.com

Group conversations are like double-dutch. But unlike double-dutch, I still haven’t really mastered the art of the jump-in.

Let’s extend this double-dutch comparison.

The group conversation ropes are turning, going faster and faster. I’m standing on the outside, waiting for my turn to go in. I thought there would be an orderly line so everyone can take turns in the ropes (that would just make sense) but people are walking past me and jumping in and out over and over again.

I want to say “Hey! It’s not your turn. It’s obviously my turn! I haven’t gone yet. Don’t you see me standing here waiting?” but I don’t because I’ve never seen anyone do it. Clearly that’s a big no-no.

So I keep standing there and, when there’s finally no one cutting in front of me anymore, I realize this is it! This is my chance! I edge closer to the ropes, watch the rhythm again, and then run forward and jump in…

…and there are two usual outcomes and a third rarer one.

1. I misjudge the rhythm and the ropes tangle around me. I run out embarrassed at ruining the smooth rhythm and don’t try again.

2. I time the rhythm right and the ropes keep turning but then I get tired of trying to keep up with the ropes’ fast pace and jump out again

3. I get the timing right, I keep up and the ropes slow down for me when I need it and other people jump in with me and it’s so much fun!

Okay, let’s end the double-dutch comparison here before we get too lost.

Basically, conversation turn-taking is hard because the turns are not clearly signaled unless someone asks me a direct question. And even then, my turn can still be ended before I finish answering the question and never given back. After standing on the edge of many groups waiting to be noticed and invited in, I’ve learned that turn-taking is more like turn-stealing. If you want to participate, just start talking. Interrupt people.

I don’t like doing that, though.

I didn’t even learn how to do this until I became a sign language interpreter and had to interpret for people who were interrupters. I did it enough times that it stopped feeling awful and more like a very useful skill to have.

It’s especially useful when talking with someone that doesn’t stop talking. When I’m stuck in a conversation with this type of person, I wonder: Is this person also a victim of conversational turn stealing? Are they too afraid to give up their turn?

Can we have a conversation without worrying about never getting our turn to speak?

With my husband, we signal each other’s turn with actually spoken signals.

If one of us wants to interrupt with something they just thought of, we agreed (yes, we had an actual conversation about this) to ask something like “Can I say something?” before jumping in, just to give the speaker a chance to finish what they’re saying. This prevents the sadness of not getting to finish saying something we really wanted to share. And it also prevents the feeling of being stuck as the listener because the speaker just won’t stop talking. We can interrupt at any time, it’s not rude, and we don’t hurt each other’s feelings. I also don’t have to monitor if I’m talking too much because I know he’ll tell me if I am.

I haven’t figured out yet how to apply this to group conversations, though, so if you have any ideas I’d love to hear them.

The worst polite question in the world: The question that’s so hard for this autistic to answer

Originally published on Medium.com

The question that’s so hard for this autistic to answer

“How are you?” is the worst question in the world.

The end.

Oh, that’s not clear enough?

Sorry, I don’t mean to be confusing. I’ll elaborate with an example.

So let’s assume a random person I passed on the street did NOT throw me the question “How are you?” as a statement. (Because that apparently requires an answer that’s a positive variation of “Fine.” Or, more confusingly, the answer “How are you?”)

And let’s assume I didn’t automatically first say “Hi, how are you?” like I learned as a restaurant hostess and can’t turn off when entering a store, which makes the employee say “How are you” back. (This time they say it as partly a statement, partly a question.)

And let’s assume the asker and I are actually standing face-to-face and properly acknowledging that yes we both are speaking to each other.

And let’s also assume the other person isn’t checking the time on their phone and doesn’t have keys in one hand while the other hand waves to their carpool buddy to hurry up, the car is open when asking me.

And let’s assume the person asked the question as an actual question and not as a statement for social lubricant purposes to make others feel social bonds are being cared for.

And let’s assume the person waits to hear my response.

And let’s definitely assume they actually wait more than a second for me to say something.

And let’s assume at this point that I don’t feel pressured to give the socially expected but puzzling “How are you?” back or the equally puzzling and more frustrating “Good, you?” even when I’m not.

Even assuming all of the above happens, I may still glitch and not know what answer to give because how am I after figuring all of this out?

And don’t ask if I’m okay because I really was okay until you asked and now I’m not sure anymore.

Wait a second.

Maybe “Are you okay?” is the worst question in the world.

Hanging out in a group can be awful for this autistic woman: The two versions of a group hang - the movie or the Netflix series

Originally published on Medium.com

There are two versions of a group hang: the movie or the Netflix series.

With the movie version, we speed through the introduction of the main characters. Side characters only show up when needed before being discarded without explanation for the rest of the movie.

The movie races to the conflict that’s splashed onto the screen in a few chaotic scenes and somehow is resolved like ten minutes later. Then credits scroll, movie’s over, lights on, everyone goes home.

With the Netflix version, we need a whole episode to get to know a few characters and the best friends’ adorably sad backstory with their neighbor. Later we find out the neighbor has no role past the first three episodes, but we enjoy the scenes and don’t mind. It takes a few episodes to introduce the main story arc and conflict, but that’s okay; we know it’s coming and enjoy the journey.

And we have viewing options: We can binge-watch all the episodes in our comfy PJs one weekend or watch just 1 episode each day after work. Or watch a few episodes and then forget about it and come back months later on vacation to watch again. Or completely lose interest halfway through the first episode and find another show to invest interest in. No ticket wasted.

I want to say one group hang experience isn’t better than the other.

But I’m biased.

If you want to see me suffer, throw me into the movie version of a group hang. Watch me wince at the ridiculously fast-paced plot. I will sit in the dark edges of the theater, hiding, waiting for the credits to roll because I car-pooled and can’t leave and it’s not completely awful but why was this movie even made? I will mentally comment on EVERYTHING.

I prefer the Netflix version. I need to know each element of the group world I’m entering. How are these people related to each other? Why do they wear the same color sometimes? Who is that one quiet person and why does no one else notice they never say anything? This group interests me but I need more backstory.

There are two ways to do a group hang but I only like one.

This conversation is graded Unsatisfactory: This autistic woman turns the tables

Originally published on Medium.com

Grader’s name: The Grader

Conversation Partner’s name: The Subject

Each bullet point is worth 20 points deducted from overall score:

Conversation opening

• “How are you?” insincerely asked with no pause for reply.

• No follow-up question after greeting. Instead, The Subject commented “You’re so quiet.”

Suggestion for improvement: Instead of saying “You’re so quiet”, ask “What are you thinking about?” or “What are you learning lately?”

Conversation middle

• The Subject rejected the Grader’s contradictory well-researched opinion because The Subject was older and “hadn’t heard of that.”

• The Subject gave off a distracting negative energy but never acknowledged it. Result: The Grader left the conversation feeling confused and depressed.

Suggestion for improvement: When asked “How are you?”, please answer honestly with “Well, not so great today, thanks for checking” or simply “Not my best day.” The Grader has already noticed you’re not doing great.

Conversation ending

• The Grader attempted to authentically contribute to the conversation. Awkward silence until The Subject started talking about something else without acknowledging what happened. After this happened a few times, The Grader put on her “active listening” mask and said nothing else.

Suggestion for improvement: Let the awkward silence sit and don’t try to cover it over with an overly positive tone. Ask a question to express confusion or to clarify what was said. Then continue the conversation.

Conversation Grade: 0

The Grader is exhausted and hopes to reduce further interaction with The Subject until suggestions for improvement are implemented.