Exhaustion

Neurodivergent people can often hit a state of profound exhaustion which is so much deeper than the usual tiredness a neurotypical person might feel at the end of the day.

Before we knew our eldest daughter is autistic, we used to wonder about why she was so exhausted all the time. When she was 5 years-old, we took her to several specialists, trying to work out why she was always so tired. Was it a sleep problem? A disease? A hidden allergy? After many visits, tests, a sleep study, and more, the specialists concluded it was anxiety. That rang true, but we knew that didn’t explain everything we saw.

Some years later, we finally understood that our daughter is autistic: she was exhausted because for her the world can be painful and overwhelming. In the years since, we’ve made many changes and she’s become increasingly skilled at managing her environment, resting well, and communicating her needs, and this has had a big impact on her levels of exhaustion. (See my four-part series on changes at home that can have a big impact here.)

In this article, we’ll work through three questions worth considering together with your neurodivergent child (or behalf of them, if needed):

• What do you find exhausting?

• How do you respond to exhausting environments?

• What does it feel like to be exhausted?

What do you find exhausting?

This is a powerful question to ask your neurodivergent child. There can be so many factors.

My article on sensory sensitivities includes a worksheet that can help you explore which environments or situations drain energy, and which ones replenish it. See also my articles on adapting the home here.

For many neurodivergent people, transitions are especially taxing. Even moving from one enjoyable activity to another can take a huge amount of effort.

Focusing attention or shifting it can also demand energy. Whether it's working to concentrate on a task or breaking the hard-earned focus, these mental shifts can be exhausting.

The social environment can be another source of fatigue. It can take work for some to navigate expectations, read social cues, and engage in conversations. Then, even after an interaction is over, your child might mentally replay what happened. This kind of post-social processing can quietly deplete their energy reserves.

Your child might already be aware of what drains their energy and there may be some factors they have not identified yet. This step is important and can begin a journey of discovery for you and your child together.

How do you respond to exhausting environments?

Everyone responds differently to energy-sappers, so it’s worth working with your child to identify their reactions.

Often, neurodivergent people feel they need to internalise their responses to things that are painful (this is called masking, see my article here). Masking can be exhausting as it requires careful concentration, mental exertion, and self-control as they withstand triggers and discomfort.^[1] It’s no surprise that this can lead to daily exhaustion and even long-term burnout.^[2]

Or perhaps when your child faces triggers outside of the house, they externalise their pain with actions, words, sounds, or general hyperactivity that show their distress. When this happens, they might return home with exhaustion resulting from the effect of facing their triggers, combined with embarrassment or with anguish from attention their public responses brought them. This, too, can lead to mental health challenges and burnout.^[3]

With the pain of the triggers and the anguish of coping through these, it’s no wonder our children are often exhausted.

With the pain of the triggers and the anguish of coping through these, it’s no wonder our children are often exhausted!

Understanding our child’s triggers, pain, and exhaustion doesn’t mean accepting all behaviours, ignoring harmful actions, or avoiding healthy boundaries. But when we approach their struggles with compassion and insight, it changes how we interpret what’s happening, how we respond, and how we teach them to care for themselves and relate well to others.

Photo by ms uppy on Unsplash

What does it feel like to be exhausted?

For neurodivergent people, exhaustion can be more intense and all-consuming than the usual end-of-day fatigue many neurotypical people experience.

An autistic friend told me that for him, exhaustion is like the flu without the sore throat: muscles ache, energy is sapped, the mind is foggy, and motivation has vanished. Every neurodivergent person is different, how does your child feel at the end of the day?

I asked Beth* a Christian AuDHD (autism plus ADHD) woman to reflect her experience of exhaustion. Here’s Beth’s full response, which gives us a vivid window into what exhaustion can feel like for some neurodivergent adults.

Did you know an ordinary day can bring exhaustion like this?

She says,

For me, exhaustion can manifest in a number of ways, some more “obvious” than others.  Deep exhaustion can feel exactly how you’d expect it to feel… lethargy, heavy eyelids, a feeling of heaviness throughout the body, yawning, inability to think clearly or string coherent sentences together, etc. But sometimes I can be in the midst of deep exhaustion without noticing or feeling that exhaustion. Instead, it may feel like agitation, jitteriness, and/or emotional numbness. Sometimes my body might be experiencing uncomfortable sensations like palpitations, muscle tension and/or fatigue, nausea and heightened senses, but there’s a disconnect between the sensations in my body and the thoughts in my mind. I might have the physical, bodily sensations associated with anxiety, nervousness, fear or worry, but my mind isn’t producing any worrisome or anxiety-inducing thoughts. What I “feel” in my body feels intense and distressing, but discerning what I “feel” in terms of my mood is inaccessible to me. I don’t know what I feel…I don’t feel anything at all. 

The physical sensations are so unpleasant and uncomfortable, but in the absence of bodily cues telling me to rest, it’s very easy to remain in this heightened state where even a minor irritation is enough to push me beyond my window of tolerance (ie, meltdown zone). 

I have now learnt that these feelings of agitation, jitteriness and tension are probably a sign that I’ve exhausted my capacity and I need to rest and replenish (especially when I’m experiencing these feelings in the absence of thoughts or circumstances that would ordinarily create those feelings). The sensations I experience are often palpitations, heat, tightness (especially in my neck, head, jaw, arms and upper back), clenching in my jaw, hands, knees and toes, heightened sensitivity to lights, sounds, tastes, smells and textures, increased sensitivity to internal sensations (such as feeling like my bladder is full when it’s actually not…), and muscle tension/pain/discomfort. Because I’ve learnt what these signals mean, I’m able to interpret them correctly and give my body what it needs, which is rest. (Rest doesn’t NECESSARILY mean sleep, although it certainly can mean sleep sometimes. By rest, I mean giving the body a break from whatever physical/emotional/mental exertion it’s experiencing. That could mean switching to a completely different activity, or it could mean switching off entirely by either sleeping or creating a low-stimulus environment to rest and replenish).

In trying to understand all this for myself, I like to think in terms of physical exertion, since that’s something we can all identify with.

Imagine you’re going for a run. But in this imaginary scenario, you have no idea what your own body’s capacity is for running. Imagine you don’t have any data on how many minutes or how many km your body is capable of running. All you have to go by is how you feel.  Your plan is just to run and keep running until your body has reached its limit, and then you’ll stop.

So you start on your run and after a few minutes you’re feeling uncomfortable, but it’s still tolerable. As you run, you get hotter, sweatier, you’re breathing faster, your heart is pounding, and your muscles are starting to ache. But you keep going. And you keep going.  And you keep going. When do you stop? When is the point where your body crosses the threshold from uncomfortable to painful to “YOU NEED TO STOP IMMEDIATELY BECAUSE YOUR BODY CAN’T TOLERATE ANY MORE STRESS OR EXERTION!!!”?

Of course, it varies for everybody. Your fitness level, your sensitivity to pain, the ambient temperature, the shoes you’re wearing, what you had for breakfast, the incentive motivating you to run, all these factors and more influence your decision about when to stop running.

Now, let’s backtrack a little. Imagine you’re about to go for a run.  But the thing is, no one has ever told you that sweating, a rapid heart beat, aching muscles and fast breathing are all signs that you’re physically exerting your body and depleting its resources.  No one has ever told you that when you start experiencing significant shortness of breath or intense pain, you need to stop running. You start your run, and very soon the sensations appear. They’re tolerable at first, but they soon become uncomfortable…painful…excruciating…. But if you don’t understand the cues your body is giving you, you’re not going to know when to stop running. You’ll keep running, keep putting stress on your body to the point of causing harm, keep pushing your body beyond its limitations and eventually the body will take over and MAKE you stop. You’ll be injured, sore, depleted, exhausted. What happens the next day when you try to run again? How far do you think you’ll get this time before your body gives up again? 

When it comes to physical exertion, there seems to be a general understanding that everyone’s capacity varies.  Fitness level, body type, limb differences, cardiovascular functioning, there are so many variables that determine how much running someone can tolerate before their body hits its limit.  And when it comes to physical activity, we are taught the importance of finding that “sweet spot” that pushes us enough to extend our capacity, but doesn’t push us too much so as to exceed the body’s limitations and cause injury.

Emotional exertion is no different. In the same way that running leads to physical exertion, engaging with others leads to emotional exertion. And everyone’s capacity for emotional exertion is different. Neurodivergent people often have a significantly lower capacity for emotional exertion.  Trying to keep up with everyone else is like trying to keep up with competitive long-distance runners. Ignoring our body’s cues to stop and rest will lead to the body MAKING us stop, resulting in injury and an even further reduced capacity next time we try.  But if we don’t understand our body’s cues that we’re reaching our limit, we just keep going until the body MAKES us stop. This could be in the form of a meltdown, panic attack, shutdown or emotional withdrawal. It could look like a tantrum, crying, screaming, shouting, physical aggression, hyperventilating, shaking, headaches/migraines, nausea or fatigue.

Hitting that point is the same as an athlete who has pushed themselves too far. They’ve crossed the threshold from stretching their limits to outright crossing them, and caused an injury. They then need a long recovery period before they can get back to where they were prior the injury.

Photo by Elisa Kennemer on Unsplash

As Christians

I’m very thankful to Beth* for these descriptions. I love how she reminds us that “everyone’s capacity for emotional exertion is different.” But her words might stir a deeper anxiety in some of us: What if I or my child can’t do as much as others? What if exhaustion keeps us from achieving what we’d hoped?

Our culture often ties identity and worth to productivity. Christians aren’t immune to this way of thinking—we can find ourselves measuring our value by what we or our children accomplish.

Many of us know we are saved by grace and not by works and yet we can feel ashamed of our limitations or worried we aren’t enough. When our children need adjustments, we might feel ashamed or even judged, as if needing rest or support means we’re lazy, selfish, or undisciplined. Deep down, we want our work and our children’s growth to prove that we are faithful, capable, and fruitful.

Yet, in the Bible, we are reminded again and again that our value doesn’t come from what we do. Our value comes from God who made us in his image (Genesis 1:27), who loves us (John 3:16), and who rescued us not by our own effort but by Christ’s finished work. Romans 5:1–2 says:

Therefore, since we have been justified through faith, we have peace with God through our Lord Jesus Christ, through whom we have gained access by faith into this grace in which we now stand. And we boast in the hope of the glory of God.

It’s not our strength, stamina, or self-discipline that saves us. Verse 6 describes us as powerless to save ourselves and verse 8 says,

“But God demonstrates his own love for us in this: While we were still sinners, Christ died for us.”

We don’t need to prove ourselves, we don’t need to strive to be more. We already have peace. We’re freed from self-righteousness and freed from despair when we can’t keep up with others.

It means that if your child needs to stop sooner than others, if they need more rest, more quiet, and more support, it’s ok. It’s part of being human. And perhaps their different capacity will lead them more quickly to what we all need: to stop relying on our own strength, and to lean instead on God’s grace.

We are not saved by what we do. We are saved by what Jesus has done.

Reflection

How could you help your child identify what drains them?

How could you help your child understand their own warning signs?

What are some things you could do when you see the warning signs in your child?

Are there things your child could do to stop before hitting deep exhaustion?

To continue thinking through this topic, see my articles on meltdowns here, on energy balance here, and on adjusting the home here.

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Footnotes

* Name has been changed

^[1] L Hull, W Mandy, MC Lai, S Baron-Cohen, C Allison, P Smith and KV Petrides, ‘Development and validation of the Camouflaging Autistic Traits Questionnaire (CAT-Q)’, Journal of Autism and Developmental Disorders, 2019, 49(3):819–833, doi:10.1007/s10803-018-3792-6.

^[2] Raymaker, D. M., Teo, A. R., Steckler, N. A., Lentz, B., Scharer, M., Delos Santos, A., Nicolaidis, C. (2020). ‘“Having all of your internal resources exhausted beyond measure and being left with no clean-up crew”: defining autistic burnout’, Autism in Adulthood, 2(2), 1-12, doi: 10.1089/aut.2019.0079

^[3] T Attwood and M Garnett, ‘Exploring Friendship in High School’ [video], Attwood and Garnett Events, Attwood and Garnett Events website, 17 July 2023, accessed 22 June 2024.