Tuesday 6 February 2018

Autism, Shutdowns and Spoon Theory


The picture shows 12 spoons.

Christine Miserandino was the first person to write about 'Spoon Theory', in 2003.  Her original article can be found at:

https://butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/

Since then, a large number of people from the disability and neurodiversity groups have used this as a basis for explaining our own situations.

I am sometimes asked about how 'spoon theory' relates to autism and shutdowns.  I shall explain it from my own perspective, in this blog.

Firstly, a reminder of the principles of 'spoon theory'.  Let us say that an average person wakes up in the morning with (say) 12 units of energy to 'spend' on the daily activities.  Once all that energy is used up, they can do no more and must rest. 

Christine illustrated it by imagining the units of energy as something physical - and the first thing she found was 12 spoons in a cutlery drawer.  So those became the example. 

Each spoon represented a 'unit' of energy for that person.  She then explained how much energy each daily task, each social event, took to complete for her, as someone with a long-term health condition.    Each missing unit of energy meant that she had one fewer 'spoon' for the day.  If she had overspent the amount of energy, maybe she could borrow a 'spoon' of energy from tomorrow....but then, tomorrow, she would have fewer units of energy to complete that day.  It is a helpful example of how much of a challenge life can be, for people placed in situations which require huge energy to complete. Autism is not a health condition, but if we are put into inappropriate social and sensory situations, we can run out of ability to keep our brain operating.  When that happens, we go into meltdown or shutdown.

What is it like for me?  I'll take tomorrow as an example.

Let us say that I wake up with those 12 units of energy, represented by 12 'spoons'.
I can do at most 12 things, before they're gone.
Some of the things need more than one unit of energy to complete.

Examples:

Showering, including drying and any lotions or deodorants etc. - 2 'spoons'.
Cleaning teeth - 1 spoon.
Washing and drying hair - 2 spoons.
Getting dressed - 1 spoon.
Dealing with the morning tasks for the house, family and animals. 1 spoon.
Driving a long distance. 2 spoons..

A day at work - 5 spoons. Visiting a shop to buy ingredients for dinner. 2 spoons if it's a small shop, maybe 3 or 4 if it is a sensory nightmare.
Preparing dinner for the family and sorting out evening tasks for the house, family and animals. 2 spoons.
Meeting a friend in the evening. Maybe 1 spoons, maybe 4 spoons.  Depends if they are autistic or not.  If not, I have to work extra hard to communicate. I want to. I love being with people, but I can't do it for long without running out of 'spoons'.
Getting ready for bed  1 spoon.

Total possible 'spoons' of energy?  Not enough.  I have 12.  12 and then I'm out of energy and unable to do more.  The sensory and social load would be too much.

So, each day, I have to plan how to use that energy.

That's how I have to plan my life, as an autistic person asked to live in a world that is not designed for me.  Too bright, too loud, too many social demands from people who expect social skills that match theirs...until they learn to 'speak autistic' and take the pressure off me.

If something unexpected happens, I may need to expend even more energy.
Angry person - for me, 5 spoons gone at once.
Unexpected change of venue from a doable one to one that is a sensory nightmare - 3 spoons gone, maybe more.

Then, I'm in trouble.
If I can't rest for long enough, to recover, after that kind of emergency 'spoon drop', I'm in shutdown. Many autistic people report that they experience shutdown sometimes or always, not the lively 'meltdowns' in common literature.  Here was one online poll.  Whilst informal, it matches with professional experience.



I cannot speak, or move much.  Overwhelming, pain, exhaustion.  And every 'spoon' I have is then gone, probably for tomorrow too.

This, my friends, is why autistic people plan so carefully, and are so concerned about knowing what is ahead. 

Important to know about 'spoon theory'.  Important to realise that small changes for you may be huge changes for your autistic friends and colleagues.  Important to realise that if we ask for information, we need it to be around those social and sensory energy-loss-points.  Help us know whether we can do the thing.  It makes such a difference.

So many autistic people have to live lives just about making it through each day.
So many are pushed into negative energy every day, for no good reason.

We want to be a full part of society, and  - if we are allowed to communicate, socialise and contribute in doable ways, we can do just that.  As friends, colleagues, specialists, carers and so many other things.  Work with us to achieve that, and all of society can benefit.

Thank you for listening.