Autism and Expectations

Preparing for Uncertainty

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Autism and Expectations

De-Mystifying Autism

Preparing for Uncertainty

There’s an emergency situation going on and it’s outside of our control. There is uncertainty about what is going to happen and when, and that will be making life particularly difficult for autistic people.

I’ve been feeling a low level buzz in my chest since I first realised that there was a high likelihood that my routines were going to change and people I love could get really sick.

I’ve been letting the problem solving part of my brain take charge a bit. Not too much, just enough. I’m the type of person who always has a long-term store of food in.

I think it comes from growing up in the middle of nowhere; if you ran out of milk it meant a half hour round trip in the car to pick some up. That tends to remind you to not run out of non-perishables.

I’ve realised that when the world feels out of control I need to plan. I have been doing a lot of mental planning of late. There is also a lot of data available (albeit of varying degrees of reliability) for me to wade through, and that helps me understand.

I want the truth. I don’t want to be told this is just like seasonal flu, when that’s not true. I don’t want scaremongering but I do want good clean information. I want to know how it will hurt and how bad it can get. This information isn’t usually shared because it panics people, but I would find it calming to know.

I’ve been dutifully following the rules and washing my hands, but utterly failing at not touching my face. I’m starting to think I should wear goggles and a mask, not because I think they will protect me from airborne pathogens, but because they will be tactile reminders every time I touch them.

We’ve had family conversations about the things we will do if we have to stay at home for a long period of time. I will make sure we all have set tasks to do. One of my children keeps asking the same questions over and over, and I know they need to feel in control too. This uncertainty is unnerving.

As long as we are well, if we have to self isolate we will play board games, we will plant seeds, we will clean and tidy, we will make things, we will learn new skills, we will make blanket forts and have picnics in the living room, we will cook and bake together, we will paint and draw, we will sit and talk about our worries.

I am keeping an eye on our stocks and making sure that we have enough tinned food to keep us going. I don’t want changes in meals to be another pressure on those of us who will need things to be as close to normal as possible.

Autistic people need information and they need to feel in control. Uncertainty is the enemy as much as the virus, and our needs for information are in conflict with others’ likely panic at more being shared. It’s a tricky balance.

Today I need to be working at a computer, but instead I am going to plant some perpetual spinach and peas. In a few weeks time they will begin to produce, and that will be one more thing within my control. Today I need to rid myself of this nervous energy and take control of my space.

This is not going to be an easy time. I would love to hear anyone’s tips in the comments.

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Published by Rhi

Writer, poet, playwright and blogger, and as of a few years ago, diagnosed as autistic too. Just one more label to add to the multitude. View all posts by Rhi

Posted on by RhiPosted in supportTagged Autism, autistic, coronavirus.

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