Being autistic brings various challenges and joys with it. I adore my hyper-focus and passions, but I loathe the inevitable misunderstandings and sensory bombardments.
I am a carefully balanced human. I know that things that won’t be stressors to other people will be problematic for me. I know that spending time in a group will be exponentially more difficult than spending time with people one-on-one. I know that I will always have to ‘perform’ to some extent, when I’m communicating with most non-autistic people.
When I am home, with no pressures upon me, I am energised and busy. My whole life is made up of projects of different kinds. I will have various things on the go; spreadsheets, DIY, wine-making, crafting, poetry, prose, gardening, art.
The idea that I am lazy or inactive seems anathema to who I truly am, and yet this was a label that stuck to me for a long time. It’s a label I hear other autistic people share too.
Why are autistic people so often accused of laziness? Why is it something that haunts us so?
Because of the exhaustion. It is my greatest and most enduring foe. I learnt to mask early on, and masking is an exhausting method of communicating with the world (even when it’s effective).
Imagine if I told you that tomorrow you must pretend to be someone else. Pretend to be Bob. I’m going to give you a portfolio about Bob – his likes and dislikes (they won’t match yours), the things he likes to talk about, his favourite phrases, his accent – I want you to research Bob, memorise it all, and then I want you to pretend to be Bob forever. I want you to be Bob in every interaction you ever have from now on. Well done, you are Bob, you now have a constructed mask.
None of being Bob will feel natural to you, but as time passes it will get easier to be Bob. You will feel frustrated by always having to reach for your research during interactions, instead of reaching for your natural answers, but that’s not important. You are Bob now. Bob is the only hope you have of being a part of the world.
At the end of each day you will find yourself exhausted. It won’t just be the concentration needed to move and behave like Bob, but it will also be the tension in your muscles from holding yourself how you think Bob should hold himself. It will be the tiredness found in the anxiety of getting things wrong – and you will get things wrong. Your version of Bob will need constant revision and improvement.
The exhaustion of autism is my biggest difficulty. It is not inherent in the autism itself, it is built out of how the world works. I know this, because when I am at home, in my routine and structure, in my safety and joy, I do not suffer with that soul-sapping tiredness.
It takes time from me. It takes recovery time I don’t want to give. It means I have to plan to rest after events, whilst watching other people jump from one thing to the next. It means I struggle to attend every talk at a conference, no matter how interested I am. It means I have to take a break, when I desperately want to keep going.
It’s the thing that makes me want to say, ‘It’s not fair!’ Because it’s not fair. So many unnecessary things steal my energy; someone not letting me know about a last minute change, things not happening when they were due to happen, people not saying what they actually mean and assuming I can work it out. So many avoidable things steal my energy – none of them malicious or intentional, but the result is the same regardless.
One day, in the not too distant past, I was too exhausted to pick up milk on the way home. I berated myself for it (I wanted a cup of tea!) but I knew it would take more than an hour’s recovery time to fit the change into my routine, and I didn’t have the time.
My husband bought milk on his way home. I was unutterably grateful. He was bemused. From my point of view he had saved me more than an hour, he had done what seemed like a huge task to me. From his point of view he had spent five minutes on it, and it was no big deal.
We were both right, and it’s still not fair that something so small can become so big to one of us. But then he can’t achieve what I achieve with hyper-focus. He can’t write ten thousand words on a good day. He can’t look at a window, decide it needs hanging shelves, and have them made and up by the end of the day. He can’t look at an old piano skeleton and see a frame to grow flowers up. These things would all take him a lot longer than they take me. That’s not fair either.
Exhaustion is not spoken about nor researched nearly enough when it comes to autism. It can be one of the most debilitating things. There have been times in my life when all my energy (and I mean all of it) went on work and commuting. I would get home and go to bed to wake up tomorrow and do it all over again. It wasn’t life. There was no joy and every spare second of my time was spent on recovery.
It’s one of the reasons we need work that feeds us and environments that don’t drain us. Working at our passions is one way to do it – our interests feed our energy levels rather than draining us.
One of the most important things since learning that I am autistic, has been managing my energy levels better. I plan recovery time. I plan time to do the things that feed me. I will always have to consider these things and work at them, and that is frustrating (I’m not going to pretend it isn’t), but I can’t change that one aspect of myself, and it’s so much better to know and understand, than to pretend and to burn out.
I’m not Bob. I’ve never been Bob. I don’t want to be Bob; he’s too two-dimensional. I am a fully functional person experiencing the full spectrum of humanity, as flawed and perfect as the next person. I just need to recuperate at times, and that’s okay, even if I do have plots and plans. They can wait. I can wait. I’ll be back sooner if I do.