Over the last year working towards greater autonomy and independence i have found "pacing" to be one of the most difficult challenges in my life.
Pacing is all about getting the most of the energy and abilities i have without pushing to hard and then getting exhausted.
Pacing is hard because the energy cost of the same thing can vary each day. For example, a cafe trip in the morning after a restful night is easy, the very same thing after a bad night sleep or in the evening very challenging.
Like with many autism things, everyone gets this sort of effect, for me its just more extreme.
With day to day things i try to pace stuff so i run out of energy about the time the carer / babysitter arrives in the evening. That way i can get the most of my work day.
I sometimes get it very wrong and run out of energy to early, or an unexpected demand wipes out the buffer i have built up. This is part of why i love my routines. They allow me to pace better by giving me an idea of energy usage.
However, it’s far more complicated for one off big events.
Fear of missing out (aka FOMO) is an anxiety and frustration that results from feeling left out on something. That feeling of missing something fun, or something important.
For one day events, and one time cool opportunities FOMO can be mood destroying. I’m sure I’m not the only autistic person who can be pushed into a meltdown when they know they are missing out. It brings up the strongest feelings of frustration, self hate and anger.
Because FOMO is so strong and pacing so hard, it can lead to a loose loose situation. If a cool event comes along, by saving no i will suffer with FOMO but if i go i may mess up my pacing for days or weeks or worse, have a meltdown or panic attack.
This weekend was a great example. My friends where going to a one day special event where a giant play centre was being opened up to adults.
I’d been before and knew i enjoyed it, but i also knew i struggled with the noise and crowds. As an extra emotional kick, of the people there who knew me, few signed, so i’d spend the whole evening unable to contribute to conversations and feeling like a drag on the friends i went with.
It was a classic pacing versus FOMO conundrum. Stay at home and preserve energy but feel left out and isolated etc, or go along and deal with the communication frustration and then hope i don’t pay to heavily for it later.
At first, i declined the offer to go. I just didn’t want to experience the frustration of not being able to communicate and feeling a drag. However, over the course of the day, i started getting the first FOMO feelings and i was frustrated.
In the end i spoke to my friend about it. We made a few plans and we went along. We did three things to make it possible for me to go.
First, we knew the venue had no quiet space. So i made double sure i had ear defenders (!) and we also took the car. Having the car means i have somewhere to retreat too if it all gets too much.
This is important, by having a calm place to retreat too i could manage the overload better. Committing to the event didn’t mean committing to whatever demands the event produced. I could pace myself at the event.
Secondly, my friend pointed out all the people at the event who knew me already and how many of them signed etc. He explained it wouldn’t be a drag and that he rather liked going to these sort of things as he felt useful. Basically, if we worked as a team it would be fine. Making sure no one person got stuck helping me communicate all evening.
The final thing that convinced me to go was a bit of self acceptance and philosophy. By not going i was passing up a chance to experiment. I knew communication would be a problem, so i thought about how to approach it. Perhaps i could rely on communication less by doing something differently or by asking for help in a different way.
The event went well. I ran out of energy early, and walked to the car a few times and then i also found a quiet place to hide. I chatted with friends and also had fun playing.
I wish i’d been more able to interact, but knowing it was something that would frustrate me my friends did a great job helping people to help me.
For example, if i signed a message, my friends wouldn’t just read the letters, then announce the words, they would say them allowed and explain to other people in the group the signs. On more than one occasion 4 or 5 people would be getting an mini sign language lesson. Better, towards the end of the evening when i was very spaced out, someone who’d met me earlier in the evening asked me if i was okay using sign language, and understood my response that i was tired but otherwise happy.
I can’t always defeat FOMO but now i am aware of it i can work to make it less impactful. This weekend shows that given the right support and techniques i am able to do things, but i need to invest time and energy into inventing those techniques and then asking for help to use them.
My friends have always been AMAZING at supporting me. When we left last night, we’d managed to turn a scary situation i wanted to avoid into a fun evening where i made new friends and improved friendships i had. By the time we left about a dozen people had signed with me and enjoyed it. I felt more included and less frustrated.
My final take away is to remind people that communication does not have to be verbose to be meaningful.
I feared attending the event unable to communicate at all. I left able to communicate one or two words per minute to most people, and for me that was an infinitely different experience.
Pacing and FOMO are always going to be linked, rather than endure it or fight it i am accepting it and then working with it.
