Updated on 25 March 2020
This blog was written by Alis Rowe who founded The Curly Hair Project, a social enterprise that supports people on the autistic spectrum.
It was first published on The Curly Hair Project website on 25 March 2020.
We are currently living in challenging times, in which there is a lot of change and restrictions. Currently for most people this means only being allowed out of the house once per day for exercise. I keep receiving messages from my friends. There is a trend in what they say. They say something like, “I am well, I’m just trying to adjust to this new way of living.”
That sentence is very interesting. In my immediate world, not much has changed. My normal life is a life of semi-quarantine anyway! I am sure that many other autistic people also live similar, isolated lives.
The greatest change for me has been observing changes in the outside world. Now, when I walk through my high street, it is deserted. All the shops and cafes I would usually go to are abandoned. All the car parking spaces at the sides of the roads, which would normally contain parked cars, are empty. It looks like a ghost town. I remember the last cup of tea I had from the cafe before it closed.
I live in London. I have seen all the photos of central London in its abandonment. I know what central London is normally like. Now it is eerie.
Another change for me is noticing the change in other people’s behaviour. People who live ‘normal’ lives are no longer going out. People who usually see their family a lot, but are in circumstances where their family don’t live with them, are in contact only by phone and internet. Or sometimes through a safe distance of the window as one person stands in the front garden and the other waves from inside the house! It is bizarre.
If I do see anyone outside or in the supermarket, I see a lot of people wearing masks. This is now normal. People are looking different.
When I go to the supermarket, many of the shelves are empty. I am no longer able to purchase my normal food. Like many autistic people, I tend to eat the same things, the same brands, and I have always tended to buy my food in bulk because I know I will eat it over a long period of time. I’m no longer able to buy large quantities of the food I like. Even on the rare occasions in the supermarket where there are multiple quantities of an item of food I like, I only buy one or two. My diet is going to have to change for the time-being.
A while ago, some places had stopped taking cash payments to minimise virus transmission. I am used to paying for everything with cash. I had to adjust.
The number of episodes of my regular TV programmes shown each week has been reduced and this is going to go on for a long time. Many people like me cling to these aspects of routine and regularity to help keep us going in daily life and now these aspects have become unstable. I am having to use my time differently.
I have become more aware of my own health and other people’s health. For example, my newsagent shop is still open and functioning as normal, but I won’t go in there if there are too many people already inside. When I walk past someone in the street, I try to make a lot of space between us or I will cross the road. I try not to touch anything when I am out – no rails, no door handles, no counters… I don’t shut gates.
I have also become aware of those who are less considerate of others – those who do not obey the ‘rules’ and who stand too physically close to others or who continue to meet up with their friends and socialise. I’m also aware of those who are vulnerable or sick. They have been strongly advised to stay at home, but a few individuals still continue on with life outside as though life outside is normal. They are risking their own health as well as risking infecting others.
With regards to working, I am worried about losing some of the paid work I have. It is very difficult for me to find work in the first place due to my ‘problems’. There are not many work opportunities for me. I am sure other autistic people have a similar problem. Although I have many skills, there are not many jobs I can realistically do. So whenever I lose work, it is a massive setback for me.
A lot of change is happening and we must adjust to this change. These are some of the things I have found useful and may help you:
Have structure in your day
Work and school provide structure and if there is no work or school, you can be left feeling there is nothing to do. This can lead to anxiety. Give yourself things to do every hour.
Keep as much as you can the same as possible
Keeping even a small number of things the same can give a lot of comfort. For example, even if you are not working, you can still get up at the same time you used to when you went to work. You might not be able to eat your normal food or watch your normal TV programmes or go to your normal gym… so you might need to find new things that you can keep the same.
Find something to do
This is a good time to learn something new or to create things. There are infinite tutorials on on the internet, so it can be very easy to teach yourself something new! Give yourself a project! Your house and garden probably need some work doing, so you could get on with that. Despite everything going on in the world right now, nature and flowers are glorious. A nice front garden can bring joy to a lot of people!
Even though gyms are closed, you can still maintain fitness from inside your house and/or garden. Keeping fit is good for reducing anxiety! There are so many home workout routines available on the internet. You don’t need any equipment either! We are really spoiled by how much information and education we have available to us!
Do things you can control
Everything feels out of control at the moment. This lack of control can be incredibly frightening for autistic people. It is comforting to do things that you can control, for example the exercises you do, the books you choose to read, what picture you choose to paint, the colour you choose to paint your living room wall… etc.
“If you’re going through hell, keep going” – Winston Churchill
Having never heard this quote before, I’ve heard it a few times recently! I have taken it to mean:
I consider it to be uplifting and it reminds me to stay strong and to carry on with my life as best I can, because one day things are going to be better and I will probably come out of it a stronger person. As mentioned above, I’ve already become more considerate as a result of this situation. I’ve seen life in a new perspective and it has made me remember what’s important – my health and the people I love. Other people have said that this situation has given them a chance to “slow down” and has given them a healthy chance to reflect on their life.
Expect that things are going to be different
If you start to expect that life is going to be different, then it is not a great a shock when a change does happen.
You could reflect upon all the things you predict might happen and think about how you are going to cope with them. Although I generally advise living in the moment most of the time, it is sometimes helpful to make plans for what you are going to do if your situation changes.
For example, even if you have a job now, you could make plans for what you are going to do if you no longer have that job.
Anticipation is often a lot more comfortable than things coming at you all of a sudden. For autistic people, it’s often the chance to get emotionally adjusted that is more important than the practical or financial adjustments. For example, I anticipate that I might lose some of my work. I anticipate therefore that my income will go down, but it’s much more important to me that I anticipate that I am going to feel upset. I have prepared for this scenario practically and emotionally.
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