Don’t call me lazy! Why being autistic can be exhausting

I worry a lot about people thinking I’m lazy. Sometimes people have made hurtful comments to me or about me. Other times, I second guess this is what people must be thinking. Either way, I don’t think people understand that being autistic can be exhausting.

It’s common for autistic people to have co-occurring health conditions and mental health difficulties. They may have one or multiple. Combine the difficulties experienced from these conditions and from being autistic, and it’s a lot to manage.

What’s worse, is that most of what autistic people experience is invisible to onlookers. People can mistake meltdowns as being a “symptom” of autism because this is what becomes visible to others. But they don’t see all the thoughts, feelings and experiences that lead up to that moment.

Before experiencing burnout, I worked as a Social Worker. I had always been a busy person. But I was pushing myself far beyond my limits and this had its consequences. After experiencing burnout, my stamina for life has decreased further. So, I suppose I worry that people will think I just can’t be bothered to go back to work.

Why being autistic can be exhausting

I want to break down some of the common experiences of myself and other autistic people, as well as those with a chronic illness. Why is it that being autistic can be exhausting? How do our experiences cause fatigue?

Autistic experiences that contribute to fatigue

Sensory differences

Autistic people generally have different sensory experiences to neurotypical people. This includes sight, smell, taste, touch, sound, vestibular (balance) and proprioception (body awareness). They may be hypersensitive (heightened awareness/experience) or hyposensitive (diminished awareness/experiences) to these senses, and this can change depending on a number of factors.

I am hypersensitive to 5 of these 7 senses. If we take hearing as an example, I find particular sounds too loud or painful to tolerate. Persistent or repetitive noises can also be difficult to tolerate. I can become distracted by noises others are unaware of. They seem to just filter these out, but I can’t do that.

I have a relative with similar experiences who describes hearing background noises louder than the conversation she is trying to focus on. It is as though it becomes harder and harder to filter out other noises. This means she expends a lot of energy trying to focus and keep her attention on the task at hand. It is even more difficult to do this in busy environments with lots of stimuli.

Too many stimuli can lead to me feeling overwhelmed. In a worst-case scenario this would lead to a meltdown or shutdown which leaves me very fatigued in the aftermath.

But being hyposensitive can also lead to fatigue. The proprioceptive sense relates to a person’s awareness of their body and where it is in the physical space in relation to other things. I am hyposensitive when it comes to this sense. A consequence for me is that I stomp my feet whilst walking (as the vibration provides feedback). This uses additional energy whilst walking and coupled with Fibromyalgia, can lead to me experiencing pain and fatigue.

Differences in communication and social interaction

I generally find it much easier to communicate with other autistic people. Non-autistic people? That’s another matter!

Common difficulties for autistic people when communicating with non-autistic people are difficulty with two-way conversations, misunderstanding or not following social norms and rules, and disliking or difficulty understanding social situations.

I, along with many other autistic people, try hard to “get it right”. When you know you are being perceived as different and you just want to fit in, this anxiety can be extremely draining. It pervades every social interaction, and life is full of them.

Many autistic people “mask” to try and fit in. For me, this involves much analysis of social situations, running various scenarios and determining how to act in certain situations. Then trying to keep up this facade as I go throughout my day.

I didn’t realise the impact this was having on me until I burnt out. The impact of trying to push through difficulties while essentially pretending to be someone I’m not was complete exhaustion.

There are many other ways communication can be draining for autistic people. Take those who do not communicate verbally or whose verbal communication is limited. They have to work even harder to make their wants and needs known and to interact with others. Other people may not understand their individual communication style, which can lead to frustration on the part of the autistic individual trying very hard to be understood.

Pain

A recent study showed children with autism were significantly more likely to experience chronic pain than non-autistic children. It’s important to note that this was based on parents’ reports only and so may not even reflect the true extent. There may be difficulties in communicating about pain between the parent and child, and the parent might also underestimate the pain the child is in. How many of us have been dismissed with the notion of “growing pains”?

This is an underresearched area and attention should also be given to conditions that develop in adolescence and adulthood. As mentioned, autistic people often have co-occurring medical conditions that often include experiencing some form of chronic pain. Pain levels can vary and be unpredictable, which brings its own challenge in trying to manage pain day-to-day.

Fatigue and brain fog

I felt fatigue deserved its own mention in this list, even though it’s really the focus of this post. Fatigue is a by-product of all of these other issues. For example, trying to deal with chronic pain takes a huge amount of physical and emotional energy. It is very difficult when there is no let-up from this as the pain is ongoing. I’m exhausted just thinking about it!

But another factor is the link between autism and/or chronic pain, and sleep difficulties. This may include not sleeping, or not feeling refreshed from sleep. People usually sleep to rest, heal and replenish their energy. Imagine knowing that you’re not likely to get this respite. It’s a difficult thought, and an even more difficult experience to live.

Fatigue can often lead to brain fog, where a person struggles to focus and organise their thoughts. When experiencing brain fog, every thought and action takes additional mental energy. Brain fog can also lead to becoming more forgetful. Perhaps you might miss medication, or an appointment. It can have knock-on effects in so many areas of your life and can be a frustrating and embarrassing experience.

Mental health

It is also more likely for autistic people to experience mental health difficulties compared to non-autistic people. This could include experiencing particular mental health conditions, or having your mental health impacted as a result of living as an autistic person in an often discriminatory and inaccessible society. Autistic people are also more likely to have experienced trauma, or to develop post-traumatic stress disorder from experiencing repeated stressful or traumatic events.

Coping and living with these difficulties is such a challenge. There is a lack of effective support and where support is available, the norm is to consider each area of difficulty individually. This fails to account for the complex dynamic between all of the areas I have mentioned in this post. For example, I may experience something and not be able to distinguish whether it comes from being autistic, having fibromyalgia, my mental health, or a combination. The holistic support needed just doesn’t exist.

Then there’s the anxiety which comes with being autistic. My mind is never quiet. It’s constantly racing with what feels like a thousand thoughts a second. I’ve never quite understood the phrase “clear your mind”, and so opportunities other people would have for rest are a luxury autistic people don’t really get.

What about managing life with these experiences?

Even trying to manage life with these factors is exhausting. You have to try and pace yourself. To estimate how much will be too much. To balance your commitments with time for the rest and recovery you know you will need to be able to function again. The list goes on. And these coping mechanisms all require energy that we don’t really have.

The most exhausting part of all?

The most exhausting part has got to be dealing with other people’s judgements at the same time as trying to cope with all of the above. People don’t see or understand what it’s like to live this life day to day. But they seem to feel qualified to pass judgement.

When people ask you how you spend your time, ‘coping’ doesn’t seem to be an acceptable answer. Those things that help you cope are dismissed as trivial hobbies and interests. It is deemed you are not contributing to society in a socially accepted manner. We are judged against the standards of what success, happiness and quality of life mean for the majority of non-autistic people. Or, more accurately, what they have been told to aspire towards. If we are not aspiring to those same things, it must just be laziness.

Well there is no single notion of quality of life. It rightly differs for each individual person. The way I choose to (or have to) live my life might be different, but there’s nothing wrong with it. Choosing to stand against what society expects and to follow your own path, all while facing scrutiny and criticism from others? That takes incredible strength and energy.

Final thoughts

Before you judge someone, think about this. Do you know how it feels to be in physical pain every single day? And to have your mind racing with a thousand thoughts a second? It’s completely exhausting. And that’s before I’ve even started anything. Never mind medication changes or hospital appointments on top. I used to do so much, but then one day I broke and I just don’t work the same way I used to.

Despite that, I think I have been making good progress to making myself healthier in the long term. I’ve been working on fitness, changes in mindset and trying to rediscover who I really am under the masking. Again, all exhausting but important work. I also keep to routines and I give myself purpose, working on projects that bring me joy.

I work every day to stay well. My husband and close friends and family know this and understand this. But sometimes it’s even easy for them to forget or overlook it. Other people might think I’m not spending my time on anything constructive. But they can’t see how I’m feeling – physically and mentally. And just to make the point – what’s a good use of my time is for me to decide, not anyone else.