by Nanny Aut
When we think of drains on our energy, we can tend to think in terms of physical energy – running up and down stairs, carrying shopping, even exercising. And we can wonder why someone who has been sitting down all day doing nothing much physically can be exhausted. After all, they hardly moved.
However, the brain also takes energy to function – the higher the processing load, the higher the energy drain. Research has shown that for everyone, regardless of neurology, decision making carries a high energy drain. This is why NT brains have a strong bias to shorthand decision making, choosing known routes rather than actively evaluating. It is also why decision making becomes worse and worse the more tired that we get during the day. It is why some Japanese and American companies have sleep pods available at work to enable employees to stay at their cognitive best.
Many adult autistics who are late-diagnosed, and usually heavy maskers, often report that they have had severe fatigue issues for years without any underlying medical reason. This is because our trauma and high processing demands drain our energy supplies completely.
If you have been around the autistic community enough, you are likely to have come across the term ‘I haven’t the spoons’. This comes from the chronic illness community where the energy you have is limited by your illness. Each day you are only allocated a certain number of spoons. Each activity takes a certain number of spoons and when they are used up, you are done for the day.
Less commonly used is Forks theory. This is where each trauma you receive in a day is a fork stuck in your skin. One or two are annoying but if you have thirty or forty, it is unbearable and you can no longer cope.
Both of these are good in as far as they go, but for me, they don’t fully describe the autistic experience when it comes to energy and our capacity to cope.
For me, mini stressors are like being flicked with boiling water. It stings, but it heals quickly. However, if I am repeatedly flicked with boiling water, there is no time to heal – the skin starts to blister. Now you are flicking water onto raw skin and it is going to hurt. The damage increases and the burns deepen. Unless that skin is given significant time to heal, just one more flick of boiling water is going to send me over the edge.
This happens to many autistic children in school every day – a whole day of little scalding flicks – they are holding back their distress but only just. They get in the car and the parent accidentally sends one last flick ‘How was your day?’ – causing a processing demand they cannot handle – and that last flick pushes them over the edge into meltdown. And next day, skin still raw, they go back in to be flicked with boiling water all day, all over again. Eventually. the burns are too deep and they can’t even face going into school. The brain says ‘No more’ and you see burnout. And burns that deep take a very long time to heal.
As for energy, I think of our energy supply as a hydro-electric dam. If you are a healthy NT, the dam is in good order and the reservoir is constantly being refilled as water is released to meet energy demand. The size of the dam is bigger than any expected energy load. In addition, the reservoir is supplying power to the equivalent of an eco-friendly house, because an NT brain has so many elements in place to reduce processing demand wherever possible.
If you are autistic – first, that reservoir is undersized in comparison to demand – because of our high processing load managing background input and balancing senses, water is going out faster than it can be put in. Before the end of the day, that reservoir is dry unless we actively seek ways to either reduce the flow out or put more water back in. If the NT brain is like an eco-friendly house in terms of energy demand, then the autistic brain is a giant funfair, all rides running, all lights on, music full-blast.
Second, where there are stressors in our day, these are punching tiny holes in the dam wall – increasing the water leaving the reservoir but not adding to the energy we need for processing. These can be repaired but it takes time and energy.
Third, every time we do an activity, our energy demand is higher than it would be if we were NT. Each activity has sensory and processing challenges attached to it. Even something as apparently simple as taking a shower can completely empty the reservoir – sensory challenges from smells, temperature change, tactile – gel and water on the skin, sounds, lighting, placement on slippery surface, water in face, steps for showering etc. Is it any wonder our brain tries to avoid activities when the energy drain can be that high?
Fourth, out brain has a fail-safe built in to protect the energy needed for basic functioning. As the energy reserves start to drop to danger levels, the brain starts handing over to Panic Monkey when a demand such as decision making comes in, because Panic Monkey doesn’t process decisions – Panic Monkey simply selects based on emotion – bad feeling = no, good feeling = yes, anxiety increase = release Dino Brain. Panic Monkey gets ready to wake Dino brain to take over if this threat to energy continues. It also sends a demand for energy – something that will increase energy fast, we start craving high fats, high sugar. The brain starts to shut down processing to less essential services, so our motor skills may start to drop, including speech, executive function crashes, our logical decision-making stops, our sensory levels start increasing and decreasing. The last processing demand to be closed is regulation. Those repair workers who were repairing the holes in the dam.
And this is just day to day. With no extraordinary demands or unusual or unexpected circumstances. Before the end of the day, if we do nothing to look after the dam, and refill the reservoir, there is only a trickle of water available to provide the energy that we need to function and our brain goes into fail-safe mode. No one is out there any more repairing those holes in the dam. If one more demand comes in, causing Panic Monkey to let Dino Brain loose to protect us – Dino brain will rupture the dam completely as the brain goes into meltdown. Before that dam can start to hold water again, it needs to get rebuilt – what is known as the meltdown ‘hangover’ where you feel drained (no pun intended) and exhausted. We need zero demand down time in order to give time for the repairs to happen. When we don’t and try and start the funfair up again too early, there are still holes all over the place, so our energy drops rapidly and the cycle of energy crash – meltdown – energy crash – meltdown ends up on repeat.
If we continue with the dam and reservoir analogy. If we are aware that these drains on the supply are happening, we can become more pro-active in managing the energy demands and the refill times. We can choose to reduce the processing and sensory demands involved in an activity so that the energy demand is lower. We can choose to identify and remove stressors so there aren’t the energy leaks or a risk of the dam rupturing completely. We can recognise when the reservoir is empty and give ourselves time to recover, or do activities that actively put water back in the reservoir.
What does this mean in practical terms?
Managing Energy Demands:
Identify the high energy demands and try to prevent – look at what is taking a lot of energy, things that make you feel tired.
The high energy demand that seems to surprise a lot of people is doing exciting or fun activities including socialising. At the time they make us feel energised as a lot of energy is released to support the activity. This release of energy drains the reservoir faster long term. And like a sugar rush, you end up with a boom and bust situation.
Part of the reason for the high energy drain from socialising is masking – pretending to be NT in order to fit in. There is a significant processing load in masking – Remembering the language style. Task-switching between a task request and performative speech such as please and thankyou. Remembering the thousands of rules including the rules of hierarchy – which make no logical sense. Calculating potential responses based on prior interactions. Recalling pre-prepared acceptable scripts. Remembering to do facial expressions, body language and tonal inflexion. Reading the body language and the emotions of the group in order to correctly respond. Trying to remember the timing rules for NT conversation. Trying to keep up with the speed and subject-switching of NT conversation. We aren’t just ‘adapting to fit in’ – we are often performing a full eight-hour play every day, with no interval or time off stage. And trying to work out our lines from scratch when everyone else already knows the script by heart.
Processing – the more processing we have to do, the faster the battery drains. This is not just the obvious cognitive load of decision making. This is taking in and processing from all around us. Calculating all the parameters around a new situation in order to identify the safest route. Trying to identify safe alternatives if a safe route is diverted or removed. Task-switching or worse, trying to do two tasks simultaneously because we have been unable to complete the first task properly before switching.
Reduce background processing where possible – ear-plugs or noise-cancelling headphones reduce a lot of background noise, as does music/familiar TV we can ignore. Reduce visual clutter – just because we lack the executive function to be tidy, doesn’t mean we do not do better in clear, uncluttered environments.
Reduce task-switching wherever possible. Allow a task to properly complete and give us time to switch.
Keep familiar and secure routines – predictability reduces processing significantly.
Clear, pre-agreed plans so we aren’t caught by surprise.
Letting us be our natural selves preserves an enormous amount of energy.
Sensory imbalance – our brain encourages us to stim to help balance this. We can also be pro-active in managing our sensory needs to reduce the processing load and energy demands. As was discussed in previous posts on senses – on The Big Five and The Secret Agents. Sensory stimming and using sensory tools will help massively here.
Protect the Dam:
Identify the stressors, big and small, that are a giant energy drain with no benefit and, as much as possible, remove them. This includes physical pain, which we may or may not be consciously aware of.
As was discussed in Dino Brain and Panic Monkey vs The Air Traffic Controller, there are a lot of stressors to the autistic nervous system that may not seem significant to the external observer. Which is why I suggest going back to the article, rather than trying to summarise here. Identifying the stressors for the individual and removing them is important.
As said earlier, if the stressors are too high, this can trigger overwhelms and meltdowns. These not only completely empty the reservoir, but destroy the dam. It takes time to repair the dam before the reservoir can start to fill properly again.
Refill the reservoir:
Knowing how easily our reservoir can drain, it is helpful to build intentional recharge points throughout the day. These can take several forms and what may be recharging to one autistic may not be recharging to another. For instance, time spent in nature can be one person’s heaven and another person’s hell.
Rest – for me, naps are awesome. I truly believe the inventor of the siesta deserves a medal. Edison (commonly believed to be autistic) regularly napped throughout the day, with a sleeping space under his desk in the laboratory – life goals for me. It was challenging when my daughter was small, because she was not such a great believer in afternoon naps at the time. We compromised with cuddling on the couch with her favourite TV programme or movie. I couldn’t nap but I could at least let my brain zone out. Ideally, I need an hour but even a ten-minute break helps top up the reservoir.
Obviously, the biggest time to rest properly is at night when we are supposed to get eight hours sleep. This is problematic for a lot of autistics and the reasons behind it are not fully understood, although there are a lot of theories.
One is that our brains do not sense time properly and so do not naturally produce the melatonin needed when we are supposed to sleep. And many parents recommend melatonin supplements because of this. However, this should not be done without consulting with your doctor first.
Another is that we have a different sleep pattern to NTs – many autistics have a clock that can move by as much as twelve hours, being wide awake at night and sleepy during the day – possibly because there is so much less background noise at night, which makes it easier for our brains to function.
The sense of tiredness itself can be an issue – we don’t realise that our reservoir is completely empty until the sirens start blaring and Panic Monkey is dashing around trying to fix the situation. And you cannot sleep with that level of anxiety.
Other senses can also throw off our sleep – many autistics prefer to sleep on the floor or in a secure enclosed space because they feel uncomfortably insecure if they don’t. Many autistic children also need to co-sleep, so they feel secure that someone is watching over them while they are asleep and vulnerable. Identifying what works best to achieve these magic eight hours, including calming sleep routines, co-sleeping, enclosed ‘cave’, white noise, swaddling with compression sheets etc. is very important to refilling the reservoir.
Cocooning – when naps aren’t possible or what your brain wants to do. This is basically creating a cocoon to stop external input for ten minutes. You are sat or lying down in a supportive safe seat (like bean bag or recliner) with an eye-mask and earplugs and weighted blanket
Engaging in a zero demand, predictable activity – such as watching a favourite TV program, playing low processing games, listening to your favourite music.
Immersing in a favourite interest is an excellent way to recharge. The brain is engaging with something that is secure, familiar and interesting and in order to focus properly, automatically switches off all external input. The only problem is that internal inputs can also get switched off so we may forget to eat, drink or go to the loo unless someone reminds us.
Things that make us go ‘mmm’ – we all have things that bring us joy and make us feel calm – listening to the sea, sitting in nature, watching lifts go up and down in videos, cuddling our pets, going for a run. There is no right or wrong here. If it brings you joy and hurts no one else – do it. It is important to make time each day for these things in order to recharge.
While not for all of us, because proprioception challenges or physical pain can be a barrier, exercise can be a very effective way to recharge the batteries. This also ties in to managing the sensory profile.
Meditation – not all autistics find this beneficial – switching off our thoughts can be challenging, even distressing. However, many find focused connection helpful, where you sit comfortably and tune in to your body. Identifying where you are feeling tense and intentionally releasing. Other calming techniques can work equally well such as deep breathing, tapping, massage or yoga. Physical stimming is excellent. The point is it needs to be calming and soothing for the individual.
Food – this is not advising quack ‘cure’ diets to ‘fix’ the gut issues common in autistics – any diets need to be recommended only by a professional nutritionist (not someone off the internet) to address specific digestive issues. This is looking at foods that can provide a slow burn steady energy supply – foods that are classed as low GI (glycaemic index) give the most secure and steady energy supply. I try to carry a protein snack with me, such as almonds. If I feel myself start to get dysregulated – or more likely, someone with me spots the early warning signs of distraction, words beginning to disjoint, body tensing, irritability – then I eat the snack to bring energy supplies back up. Hangry is very much a thing. While your brain tells you otherwise, sugar or high fat foods are a very bad thing to have as an energy boost because it gives you a quick surge fooling your brain into going back into full energy mode before crashing as the energy supply burns through.
However, while quack diets are a GIANT NO, going to your doctor and getting potential gut issues checked out and treated by specialists is a good idea. If our digestion works properly, our wellbeing increases enormously because we are no longer in pain and we are now properly accessing the energy from the food we eat.
Hydration: Many autistics have a low sense of hunger and thirst. It can be very easy for us to forget to drink leaving us quite badly dehydrated. Being dehydrated can badly affect our processing and energy levels, so building drinks into our routine is very important. And remember, it is no good asking someone with a low sense of thirst if we are thirsty – we don’t think we are, unless our lips are starting to crack and our throat gets scratchy.
Maintaining the reservoir:
If we are recharging, we need to take as much processing out as possible. Otherwise we can be losing nearly as much energy as we are putting in, so the time to a full recharge can take much longer.
The more trauma we carry, the more badly damaged the dam is and the more it leaks. We need to be addressing and removing the causes of trauma and repairing the trauma already there. For low grade trauma, following the sequence of calming the brain stem (Dino Brain) through rhythmic activity, followed by calming the limbic system (Panic Monkey) through physical activity such as stretching, concluding with communicating with Logic brain – the Air Traffic Controller – using dump diaries to write out distressing thoughts, talk therapy, mantras etc. Where the trauma is longer term, more severe, then working with a qualified trauma therapist who understands the autistic brain can be highly beneficial.
Plan ahead for energy drains. For instance, taking a shower can be a massive drain, especially sensory wise. Choosing to shower last thing at night, after we have had a break, means we don’t start the day with a depleted reservoir. An afternoon socialising can be really enjoyable but can be a high energy drain and to avoid it completely draining the reservoir, you may need a day of rest before to fully fill the reservoir and a day of rest after to fully refill it again. Planning that in, ahead of time, can avoid an unexpected crash.
Wherever possible, avoid situations that lead to meltdowns and remember meltdowns can take two to three days for energy to replenish properly.
Maintaining our reservoir and avoiding damage to the dam, is essential to our well-being. Low energy reserves are generally part of the mix in causing overwhelms, meltdowns and burnouts. If our energy reservoir is full, then we can cope a lot better than when energy supplies are low.
It is something that we can easily overlook or forget to do because the people around us seem to have an unlimited energy supply. It can be hard, and frustrating, to remember that our energy has limits and we need to be aware of where our energy is getting used up and how to recharge when we need it. However, when we do get it right it reduces anxiety and depression, boosts our cognition, even helps bring our high/low senses closer to the centre.
It is definitely something worth giving a ‘dam’ about.