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.
Autism and Expectations 
I’m finding it all rather overwhelming and have given in to taking on the information so as to avoid dangerous ignorance. I am not worried for myself, more for those around me if I fail to recognise the rise and become a vector in and of myself, through which others may be harmed.
I have found that getting outside and doing little things that, as you said, are controllable is really helping. Yesterday this was assessing the state my pond is in and then just popping to the shops and getting some art supplies so that I can process the emotions through creativity when they get too much. Today this was a walk by the river and canal where I live, stopping to take photos of the water and birds. Seeing a Dipper bobbing on and whipping in and out of the water really helped remind me that the world still rolls on in predictable patterns and there is still much certainty to be found.
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That sounds hugely productive. It is overwhelming and similarly I am more worried about those around me than myself. I think we need to focus on what we can do and be as aware of not spreading things as much as possible. You’re right, the world rolls on and there are so very many patterns to comfort. Thank you 💐
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It looks like you’ve got a great plan! I personally am only looking at info from WHO and CDC.
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Very wise!
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Thank you for sharing your thoughts on this. It’s comforting to know that others are in the same boat, trying to manage the information overload while life, of necessity, continues.
You know the old proverb, “Look after the pennies…”? Well I’m looking after the little details, the things that are within my control. The mundane tasks such as cooking and washing up. It gives me a sense of order, helps me feel that I’m coping and that I can get through day by day.
I’ve been using the phone and even had a video call—a shock to many who know me, I’ve no doubt—to keep in contact with people and experience the next best thing to being there with them in person. It’s keeping the loneliness at bay.
I had a bit of a wobble yesterday when being forced to work from home made me focus on the obstacles that creates, on being compelled to change plans at short notice and switch to alternative routines. I took a bit of time out to work through my emotional response, distracted myself from the downward spiral of negative thoughts. Focusing on my immediate needs (food, drink, online company) brought comfort and an increased ability to cope.
I think the main thing is to keep your mind and body busy, and look after the little bit of the world you’re living in and the people you share it with.
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Yes, I love that. Focusing on the detail can really help. Making sure that you feel in control of the things within your sphere can mean the world. Thank you!
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I’m literally reading this after waking up early with thoughts about how safe the outside world is 😰
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Sending kind thoughts your way. I hope you can find something to focus on today 💐
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Well my university year has just started and I’m buying clothes and other things today to stock up my student accommodation with. I love having a room of my own at uni which I can organise how I like. It was just stressful last week when I realised I didn’t have all the things I needed because during the previous I got too tired to get everything.
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I’ve found that making sure my store cupboards are full is calming and helps me feel in control.
I’m washing my hands frequently too but cannot keep from touching my face. I always seem to have an itch somewhere.
Thanks Rhi for worrying about this xx
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😁 worrying and writing both seem apt. I’ve decided to wash my hands every time I notice I’m touching my face – which means doing it a lot.
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Oops… Writing* not worrying! Apologies Rhi and everyone xxx
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I encourage my autistic sons to focus on all encompassing tasks that take a lot of concentration, it seems to help calm stress for a time. Sending you lots of warm wishes 🌿
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That sounds great. Thank you, warm wishes to your family too 💐
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I have writing projects to do, one of them a book on coping with chronic illness and hospitalisations when you’re autistic – I’m immunosuppressed and REALLY hope not to need it myself again anytime soon.
Plus, a friend and I just started an online science fiction and fantasy convention to help fandom people not to feel isolated, since all the big cons seem to be cancelling one by one. It’s SFF Convention Online on Facebook if anyone would like to join in.
But overall I’m really not coping very well. Ironically that’s because I’ve had a lot of isolation at home due to chronic illness. Normally when I catastrophise I can use people around me to work out what a proportionate reaction is, but the entire world seems to be freaking out so that’s not helping. And I have all sorts of sub-panics about things like getting ill and being confined to my bedroom, or being on my own in hospital, loved ones dying, etc. etc. Cheerful!
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Writing projects! How could I have missed that one out?
It IS hard. There are people panicking and not using that fear for anything practical, which is upsetting. It sounds like you are doing the right thing, and I hope that social networks online really pull together to bridge isolation as much as possible. The online convention is such a brilliant idea 💐
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We’ve just come out of one crisis situation where I work, and launching into this one tomorrow – changes in routine, uncertainty, ever-changing scenarios. Little surprise that people at work are worrying about how I’ll cope. But I am actually finding strength in being autistic in this situation. A real crisis levels the playing field for me – now everyone is experiencing what I feel all the time, and I have the experience and the practice and the coping mechanisms to deal with it possibly better than them.
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That is an excellent point. In many ways our issues now are caused by other people behaving erratically as much as the situation.
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