Autistic people are all different, much like neurotypicals are all different, so we’re all going to have our own challenges. A super common challenge is surprises. It’s a big one for me, for sure.
I love routine. I love knowing what’s around the corner. I love knowing which characters will die in a book or film. I love seeing a full calendar and being able to plan for every single minute of every single day. This isn’t boring–my life is full and varied, but it is incredibly helpful to be able to prepare for changes. I don’t pivot well, and when I have to do a new thing, take in new data, or write a new script, it takes a lot of energy and I’m going to maybe waste time in recovery afterward or not behave as I’d like.
I recently read someone refer to autistic people as living in the future, and that makes so much sense to me. If you’re coming from a place three steps ahead and then all of a sudden things are not the way you expected them to be, you’ve got to reassess and do a bunch of extra work to figure out your new future. It’s a bit of a panic, a little fight or flight scenario, because if the thing you didn’t expect to happen, well anything can happen.
Here are some examples of challenging surprises that should probably just be fun and positive but are not:
Opening gifts: For as long as I can remember, I’ve been notorious (and frustrating) for finding my presents and unwrapping them before Christmas or whatever holiday. I would carefully lift or slice the tape and then retape when I was done. Of course I didn’t know it then, but the reason I did this was so that I could be prepared to open them in front of my family. I could have the right reaction (or at least try–reactions are not a skill that I’ve aced). I was known as The Christmas Dork, The Grinch, or just generally having ruined the fun of Christmas. I guess it doesn’t help that I never believed in Santa–I’ve just never seen the draw of the holiday. And birthdays were the worst, since I’d be the only one opening presents while everyone else watched, waiting for me to project the correct emotion. And there wasn’t one single stash of gifts for me to open ahead of time. I was pretty young still when my parents decided it was for the best if my gift was “shopping spree” or cash.
A friend popping by: “I’m in your neighborhood. Wanna grab some food or I can swing by and say hi?” As fun as that could be, I need more than an hour to prepare myself for pretty much anything. Last weekend a friend of mine was nearby and asked if I wanted to go to the new vegan ice cream shop, but he had to head back to the suburbs in 40 minutes. That means I would have had to stop what I was doing (reading the news on my phone), put on pants and contact lenses, and drive over to the shop, which I’ve never been to so I had no idea what parking was like, immediately. I would have loved to see my friend; it’s been more than a year, I think, since I’ve seen him in person. Also, ice cream. But it seemed an impossible feat, so I said no. He texted me a photo of his ice cream cone and I gotta tell ya, it looked pretty wonderful, but I couldn’t do it.
It’s never happened to me, but a surprise outing: I’ve never been on an actual date, and no one has ever taken me out for a day of mysterious fun. Like, my partner would never say to me, “Clear the day, I’ve got something planned and I’m not going to tell you. It’s a surprise.” Or that scene in movies where someone surprises their partner with a surprise vacation–what the hell? That in particular I find insulting as well as just difficult, because I feel it invalidates the other person’s life. “Oh sure, you’ve got stuff going on this week, but it’s probably not important or enjoyable, so cancel it, cuz we’re going to Hawaii.” No.
Going to a new restaurant: Man, I have so many food issues that even if it’s a vegan restaurant, I need to study the menu and check out photos of the food first. What’s the lighting like? And is there a booth or corner table we can have so I don’t have people brushing against the back of my chair the whole time?
Phone calls: I’ve talked about this before, but unplanned phone calls can be very stressful. I’m grateful that technology has given us texting–much easier for simple conversations and social planning. Especially for work, I prepare for calls with notes, since I forget what I want to say and am trying so hard to be pleasant. When my parents call, I assume someone is dead or in the hospital, which is maybe just the safest way to prepare for the worst.
Plot twists: (I guess this is a microcosm of my life, in that as much as I want to map out my life I need to do it for fictional characters.) It’s true for books and films, but it especially requires work from me when it comes to TV series. I haven’t had regular television/cable in about 20 years, so that thing where you watch one episode of a show once a week hasn’t really been part of my life in a long time. If lots of friends recommend a show, I will usually wait until a few seasons are available to stream online, preferably the whole series. And by the time I’m into the second episode, I’ll have gone on IMDB to check out the cast members, who’s on for how many episodes, and then read summaries or full synopses for the entire series. Are there spoilers available? Yes, please. Is it based on a book I have or can read before getting invested? Even better. And then I will watch that series over and over until I’ve memorized dialog and can use the show as background noise to focus on while I fall asleep.
A new band (or maybe even album or song) while I’m driving: When I drive, I’m all in. When I listen to new music, I’m all in. I don’t have the capacity to split my attention equally between the two, so if you’re riding with me and want to play me something new, don’t. It’s beyond distracting. Good music will have novel data, which I almost never fully appreciate on a first listen, because it takes extra energy to process it. Driving is almost all novel data. I didn’t realize it but my partner pointed out that I do a lot of mapping out of new routes even if I’m using GPS, looking at all the steps way ahead of time–eliminating surprises–so of course I don’t want to miss my turn or hit that kid chasing their ball because you think I’d really like this band that sounds kind of like that other band.
For me, familiarity is key. For you, respecting my scripts, my planned future, is key.
That said, I do enjoy new experiences. I do enjoy travel. I do have periods where I put myself out there for a day or so full of question marks. But I do it in a very controlled, safe way, with someone I trust and a backup or escape plan. I’m not going to go to a ceramics or kickboxing class on my own, but I will let a friend teach me to snowboard, hike through a new city to photograph graffiti, or hit a music festival. Without preparation and safety, those could all be their own recipes for disaster, but with a pocket full of social scripts, a positive attitude, and $20 tucked in my sock and a backup phone charger, I can open myself up to fun in at least a somewhat spontaneous way.
You are my daughter!
LikeLiked by 1 person
It does seem to be hereditary, so…
LikeLike
YES! I hate when friends say they’re in the neighborhood and want to drop by!
LikeLiked by 1 person
I just came across your blog and oh boy, I relate to this so much. Actually every one of your posts that I’ve read so far have resonated with me to the nth degreee. I’m 35 and have suspected I’m autistic for the past year or so…a lot of emotions over here!! I recently received a referral for formal evaluation after taking some assessments with my therapist…now I’m trying to decide whether I want to pursue a Dx. I just cried reading this post because I feel like I could have written almost every word of it. Anyway, thanks so much for sharing your experiences — it helps make mine feel really-real. 💗
LikeLike
Your experiences are really real! And yup, I went through this just a couple of years ago — I’m so excited for where you’ll be in a couple of years. If you can afford the diagnosis process, I recommend it. I needed it psychologically and I figure as I age I might find I need supports or services and having the diagnosis on record might come in handy.
LikeLike