A lot of people commented on my post about Asperger Syndrome and Fatigue, saying they really identify with what I was describing. And I’ve had a couple of comments asking me more about how I manage fatigue, so I want to talk more aobut that. One person, gabygarzalinde, has asked:
I was hoping to hear if your “battery” goes up and down, with regards to the amount of stuff you can do without getting fatigued? Or have you found some kind of baseline?
I found this an interesting way to think about it – I’ve never seen my energy levels as a battery before. But certainly my energy levels do vary. These are not random variations, but rather they are based on a combination of factors. This is similar to everyone, I would imagine – varying energy levels is certainly not purely an autistic thing. Those of us on the autism spectrum are simply are more vulnerable to fatigue because of the huge amount of energy we expend in trying to process the world with oversensitive brains which don’t automatically process and filter.
I have come up with a list of things that cause my energy ‘battery’ to go down, and a list of things that cause it to go up. I will call these ‘energy drainers’ and ‘energy boosters’, respectively. Some of these will no doubt be the case for most people, regardless of whether or not they are on the autism spectrum. Others may be very specific to me. I can only share my list, and recommend that people come up with their own lists – the more you are able to monitor your reactions to things, the more you can form strategies to maximise your energy levels.
- doing a lot of different things in one day, which require constant switching of attention
- interacting with a lot of people
- being in a noisy environment
- being in an environment with fluorescent lighting
- being in a new situation, or meeting new people – this requires a lot more mental processing
- not having enough sleep
- eating a lot of processed foods with artificial additives
- simply eating too much – more than one’s body needs
- having had an unpleasant interaction with someone
- a miscommunication that wasn’t sorted out
- an unresolved problem in one’s life that one is thinking about
- feeling confused about something
- being in a hot environment
- being able to focus on the same thing for an extended period of time
- spending time alone, in a quiet environment with natural lighting
- having a bath, or going swimming
- going for a walk alone in the woods
- having enough sleep
- having a duvet day – where you are alone and don’t go out
- reading a novel
- drawing a picture
- talking to a friend who understands
- burning scented candles
For me, a really important thing has been simply recognising that I can’t compare myself with other people. I used to feel constantly inferior, thinking to myself: ‘Why is it that other people have the energy to go to work, hang out with people after work, and then go out in the evening and stay up till 2, and then be able to get up for work the next day? What am I doing wrong?’
Actually, a nice thing about getting older is that after a while, one’s peers are also no longer able to do such things either! But when I was a teenager and young adult, so many people my age could stay up all night and seemed to have endless energy for chatting and partying!
I’ve found helpful to look at it in terms of threshholds. Things like not enough sleep, and unhealthy food, are bad for everyone, but different people have different threshholds of tolerance. There are people who can get only five hours sleep each night for a week, (or a month, or a year) and still be functioning and able to go out socialising in the evenings, and come across as full of energy. They may still feel tired, but their tiredness isn’t disabling – they can still function with it. If I had only five hours sleep for a week, I would not be able to function. My tiredness would be a completely different level from theirs, and I would become unwell.
Sadly, there is a prevalent view in society that ‘if you think you can, you can’, so the people who are thriving on, say, very little sleep, or a very busy lifestyle, are seen as being more positive thinkers than those of us who get exhausted and ill. We are apparently just not trying hard enough, not being positive enough, not embracing the ‘mind over matter’ mantra! We’re giving up too easily! When in fact, we are actually constantly expending way more energy and effort than a non-autistic person, simply to function and survive.
Interestingly, people don’t apply this same logic to those who have physical disabilities. With someone who has a bad leg, or a bad hip, people generally understand that this person won’t be able to walk so far as someone with no mobility difficulties, and that they will tire more quickly. It is not seen as a character flaw, or laziness. Same with someone with cancer – society understands that someone with cancer will easily be tired. I suppose the difficulty with autism is that it’s not a physical disability or an illness. It really isn’t understood very well at all, and fatigue generally isn’t listed as a ‘symptom’.
I had an interesting conversation with someone I met recently. We both have difficulties with fluorescent lights – hers is because she has lupus, she told me, so I told her that mine is because I have Aspergers. Her response was one that I imagine many people with Aspergers will be familiar with:
‘But you don’t seem like you have Aspergers.’
‘Well, no,’ I said, ‘but then that’s because the media portrays it in a very stereotypical way, and it’s different for everyone.’
‘No, but I know about Aspergers,’ she insisted. ‘I know a child with Aspergers, and he’s nothing like you. He doesn’t know how to interact with people. He has challenging behaviour, he fights with the other kids, he screams, the teachers don’t know how to deal with him.’
‘Ah yes, it was the same with me when I was a kid. But I’m forty now – I’ve had many years to learn strategies. My brain doesn’t automatically process a lot of things, so I’ve had to teach myself how to do it deliberately and consciously, working out strategies.’
Her response to this indicated an awareness and insight that I can only say I wish more people demonstrated. She said, ‘Wow, that must be really tiring for you.’
‘Yes,’ I said. ‘Yes, it is.’
It is rather ironic that the more a person is able to find strategies to deal with the difficulties their disability may present, the more they are seen as not really disabled. But the difference – and it is a huge difference – is the effort and energy that person is constantly expending to enable them to function on this level. Never forget that just because someone else is doing something that you find effortless, doesn’t mean they are also finding it effortless – it could be taking every ounce of energy they have. And if sometimes they are not doing it, this doesn’t mean they are being lazy or not caring – they could be simply be taking a much needed rest to restore their energy.
This can apply to socialising, and also to many other things. Spelling everything correctly, for instance, for people with dyslexia – if someone is making spelling errors in an online interaction, never assume they are being stupid or lazy. Spelling does not come equally effortlessly for everyone, and people are not obliged to use up all their energy to do something that happens to come naturally to most people. I am fortunate enough to find spelling and grammar comes naturally to me, but I am aware that this is through no particular virtue of my own, and am constantly amazed at how it’s seen as totally acceptable to judge people for whom this isn’t the case.
What if I compare it to walking with a limp? For example, if you hurt your foot, it can sometimes be possible, with a lot of effort and pain, to walk normally, without a limp, as if nothing was wrong. But that doesn’t mean you are being lazy if you limp, or that you should be judged for simply ‘not trying hard enough’ to walk like everyone else.
Managing one’s energy levels means having to be strategic – prioritising what is most important, simply so you don’t crash. For those of us on the autism spectrum, this can sometimes mean allowing ourself not to fully focus on social skills and social etiquette skills every second of the day. So we may find we have neglected to smile at someone, or to say thank you, and this can really bother people – but actually, it really isn’t the end of the world. This is sometimes what we need to do. And it is something that friends who care about us and want to be understanding should be able to accept. Not that it’s okay to use this as an excuse to be rude to them – it is of course vital that friendships are two-way, with both sides valuing and respecting each other and trying to understand each other. But it’s so important to be able to have that conversation with friends, where you explain that you care about them, but you need time alone, and that you will sometimes make social errors, and that you don’t always have the energy to maintain social skills. Friends who are able to understand this are true friends, and together you can find ways to understand each other and value each other.