by Guy Shahar
Published: 2nd April, 2020
It’s something that’s often experienced and talked about by autistic people but rarely discussed publicly. It’s the phenomenon that at some point in life, you just run out of steam and find yourself unable to keep up with the way of life you’ve been living. It may happen gradually through a lifetime of increasing demands and micro-traumas, or suddenly after a period of more intense stress than usual. It may be a continuous low-level physical and emotional exhaustion for many years, or a sudden acute collapse.
Dr Dora Raymaker, autistic herself, is one of the very few researchers studying autistic burnout and is currently completing a study into it. In a recent interview, she offered a working definition of it that her team is using: “A state of pervasive exhaustion, loss of function, increase in autistic traits, and withdrawal from life that results from continuously expending more resources than one has coping with activities and environments ill-suited to one’s abilities and needs.”
The smallest tasks can suddenly feel unattainable and the motivation to work towards them can disappear. Keeping going in life can demand vastly increased efforts, which adds to the exhaustion. The motivation and mental clarity required to complete even small tasks can be lacking. Social relationships can start to be dreaded, not for what they are in themselves, but for the energy that they will require, which can no longer be afforded. The possibility of lightness and joy in life can give way to a heaviness and sense of the impossibility of meeting basic requirements.
Why Does This Happen?
I have written in The Lived Experience of Autism about what happens when someone sees an autistic person who appears to be “not very autistic” (i.e. who appears to live up to societal expectations). They do not see that this “living up to expectations” does not come anywhere near as easily for the autistic person as it might appear, and can have no idea of how much it takes to arrive at that appearance. Putting in so much more effort than others appreciate over an extended period of time simply to meet basic expectations can take its toll over the decades.
An accumulation of stress over many years, or a sudden burst of it can lead to the sort of exhaustion that Raymaker describes. It can happen in adulthood, or even at key stages of childhood where there are changes in physiology, psychology and social expectations that expose certain incompatibilities between the person and the environment. Examples might include becoming a toddler (when “regression” often occurs) or an adolescent.
But Autistic People Often Seem Fine. Are they just “Masking”?
“Masking” or “Camouflaging” is a concept often applied to autistic people – especially female – who put a lot of effort into fitting in with the expectations placed upon them such that their difficulties in doing so are not easily visible.
The language is not flattering. The words imply a level of sinister deceptive intent that is actually far more common in mainstream society than in the autistic community (for example, treating someone in a friendly way when you hold only disdain for them, or going out and laughing like you’re really enjoying yourself when you’re actually feeling miserable and can’t wait to go home, or smiling when passing someone in the street only for the smile to instantly disappear as soon as they’re no longer looking, etc)
In autism – at least in my own experience – “masking” (so called) is more about simply trying to do what you think you’re supposed to do. There isn’t even always the consciousness that it’s so much easier for other people to do this as the expectations were designed with the convenience of their neurological type in mind.
Nevertheless, the efforts required to attempt this (even though we might not realise that we’re attempting anything out of the ordinary) can be tremendous, and over time or at stressful times, can lead to a progressive exhaustion that can prime us for autistic burnout.
What Constitutes Autistic Burnout?
I understand Autistic Burnout to be a compound burnout resulting from a culmination of various other burnouts, fatigues and overloads. Some non-autistic people will experience one or possibly more of these during their lifetimes, but autistic people have the privilege of a much higher likelihood of experiencing most or all of these factors at the same time:
– Emotional Burnout
This is the most obvious contributory factor. A lifetime of being misunderstood and rejected (sometimes in a very unkind way) on account of a few superficial differences from the norm takes its toll.
Like anybody else, an autistic person starts off fundamentally open to the world, and full of enthusiasm to participate in it with trust, goodwill, kindness and a natural instinct to put others’ needs before their own. When this is met with repeated rejection and harshness, the autistic person is not able to “adapt” like others and close down parts of their heart to numb the pain and be able to continue with daily life. The autistic person’s heart cannot be segmented and selectively shut down – it remains open to the effects of life’s ordeals. That’s why, often from the earliest ages, autistic people seem to “withdraw” or “regress”, when what’s actually happening is they are experiencing such hurt that they no longer have the inclination, energy or confidence to remain in active interaction, even though this may be what they would love in other circumstances. This is explored more in the article on Sensitivity and Idealism. It’s an early instance of Emotional trauma that, when continually repeated, leads to burnout.
The cycle perpetuates itself, and the person becomes so alert to the triggers of such pain that they react with panic to any situation that arises that looks as if it might lead to a repeat of what they’ve experienced before. It’s happened so many times and they’ve done all they can to prevent it that it no longer feels avoidable, and so they can easily enter some sort of meltdown state in anticipation of what they expect to happen next. Then the meltdown itself becomes an additional reason to be anxious of the same triggers next time, and the cycle deepens. Essentially, it’s a post-traumatic stress reaction, and can occur on such a fundamental level that, once triggered, it can’t be soothed by reason or by a realisation that things may not be as bad as they seem. It then needs to work itself through in whatever way that person processes it. Many people might feel better after releasing it in a meltdown. Others may need to wait for hours or days or longer for it to process itself out of the system, with no way of avoiding it through understanding or even making genuine peace with the situation.
The accumulated emotional exhaustion from a continual repetition of such events can be massive and constitute a profound burnout in itself.
– Sensory Overload
Sensitivity, in all senses, characterises an autistic person and can be the source of many great strengths and assets that are not common in society and are rarely acknowledged (discussed in our Ted talk). Sensory as well as emotional sensitivity and heightened perceptiveness in other areas can bring huge gifts to the individual and to society if recognised, respected and not overloaded. Unfortunately, as we saw with the emotional aspect, this is rarely the case.
Whether it’s the background noise that others absorb as a part of daily life, or an extreme irritation at certain touches or textures, or a burning sensation from lighting that others find fine, or various other sensitivities, or a lower-level combination of many of them, most autistic people have some difficulty with the level of sense-stimulations that is common in the prevailing culture. While others’ level of sensory sensitivity is low enough not to be too adversely affected by this, or even to seek and gain excitement from it, this is not the case for the autistic person.
The only things that can truly ease sensory overload (though not eliminate it, of course) are either to create a less stimulating sensory environment or for the rest of the person’s environment to be so nourishing and full of love and fulfilment that the sensory overload becomes easier to absorb. All of the person’s coping energy can then go towards managing the discomfort caused by the sensory issue and to some extent being able to transcend it. This is one way we can work with young children, where we have some control over their environment and have the time to establish that safe space, confidence, resilience and sense of needs being met from a very early age before any real adversity hits. Sadly, for anyone older than a young child, neither of those things is possible. Without a total withdrawal from society, it is not possible to escape the abundant use of sensory stimulants. Additionally, it is likely that the emotional depletion discussed above, as well as the other burnout factors introduced below, will be in full swing, meaning that the sensory difficulties cannot be easily managed and can only compound an already extremely challenging environment. It becomes another contribution to autistic burnout.
– Cognitive Fatigue
While autistic people can have tremendous cognitive capabilities, the ways they are commonly expected to use them are not necessarily intuitive to them. They have their own preferred ways of using their intellect and processing power, but these ways are not the norm and are not as widely valued as they might be. The result is that their capabilities are not recognised, and their abilities to express them in conventional ways are judged to be inadequate.
So, the autistic person, in order to try and fit in, is forced to work in highly counter-intuitive ways, and to focus on things they might consider trivial at the expense of things they find fascinating.
There’s also a sensitivity element to this, in that the autistic mind may be more prone to disturbance as a result of stimuli, and it may be much more difficult than for other people to compartmentalise things that might need attention. It’s not a natural thing, for example, to park a pressing issue and think about it later, or to switch off from something once it is complete. The chances are that it will be circulating around the mind for a very long time, along with various other things that are already there. A simple uneventful conversation can be vividly internally replayed many times until it is processed, and if there is any hint of conflict in it, this can go on for much longer. The mind rarely gets a chance to rest, even if great efforts are made for the purpose.
A balanced world in which things were dealt with in a measured, unemotional way and kept in their optimal proportion would be ideal (for everyone), but that world is still elusive, giving autistic people another contributory factor to fatigue, and to low morale that can assist the fatigue.
– Empathic Burnout
An empath is someone who can not just notice and understand and “empathise”, but who experiences and actually feels the feelings of others as if they are their own. I cannot say with any certainty that all autistic people are empaths, and there are definitely empaths who are not autistic, but there seems to be a great correlation here, which contributes significantly to autistic burnout and can make social interaction (if it’s not the right type of social interaction) additionally difficult. Many will not have heard of it, but empathic burnout actually is a thing.
Empaths often have no idea that they are empathic. I didn’t for very many years. This is because when a change of condition or mood happens, it’s easy to find some other explanation for it, to assume it comes from within us for some reason, or to just accept it; when actually it’s coming from the feelings of someone around us. Crowds and social interaction are often overwhelming for empaths (as they are for autistic people), without their really understanding exactly why, and they can need significant alone time to recover, ideally in nature. An unfortunate encounter – even an unnoticed one – can lead to unexplained feelings within the empath, which they may mistakenly assume comes from them, else they may feel deeply violated by the experience of someone else’s emotions entering and affecting them.
Many autistic people talk of some sort of additional sense by which they can understand the motivations of others and can intuit for example whether someone is trustworthy or not. This is the start of becoming conscious of their empathic nature, but many others remain unconscious of this.
It’s ironic that autistic people are commonly thought to lack empathy, when many of them have such an overwhelming amount of it. What is actually the case is that they don’t express empathy in the way that is conventional in mainstream society. That’s very different from not having it.
Professor Tony Attwood in a recent interview emphasised how in autism, “anxiety is contagious” and how sensitive autistic children are to the emotional environment around them.
While it has many great advantages and would be a great aid to life in a peaceful society where being happy, balanced and open was the norm, it can be extremely difficult to live with in a society dominated by a fear that leads to routine competitiveness, intimidation and power-seeking. It’s especially difficult on top of all the factors mentioned above. A rare opportunity for respite can be instantly removed simply by coming into contact with someone who, for no fault of their own, is feeling below par. Somebody else’s intensive reaction to something small does not only provide information about their condition, as it would to others, but also changes the empath’s own condition. Walking onto a busy train is not only uncomfortable and constraining, as it would be to others, but provides dozens or hundreds of opportunities for the empath’s condition to be involuntarily changed too.
I remember a period when I needed to regularly commute into and then across London, and I complained to colleagues that the journey was so manic that I felt like I’d already done a day’s work before arriving at the office, and was totally exhausted before the day had even started. They readily joined me in recognition of this observation. It was only years later that I realised that I was the only one speaking literally when I said that.
So, this difficulty in perceiving and experiencing boundaries means that there is a constant and uncontrollable rush of other people’s feelings into us, which can leave us vulnerable, especially in situations of overt conflict. Over many years, this in itself can lead to burnout. In conjunction with the other elements of Autistic Burnout, it can be devastating.
– Cultural Malalignment
In view of all of the above factors, one thing that would be invaluable for an autistic person would be to be able to slow down and take some time out to be alone and recover their energies before subjecting themselves once more to the onslaught.
But this recovery time is not allowed for. Constant availability and ultra-responsiveness are increasingly the norm and fundamental to societal and professional expectations. Many non-autistic people thrive on this, others struggle with it; but for someone going through autistic burnout, it can be devastating and remove the last possibility of being able to manage. Once you’ve signed up for a career or a family life, it would be a major life decision to change that, and may not be one that is desirable for all. But that doesn’t leave any space for recovery.
When this happens, it can result in a person being effectively “out of action” for many days at a time or performing the duties they have to in a suboptimal way, that can lead to another self-perpetuating cycle of letting people down, incurring their anger and provoking conflict situations that set the process off again and deepen the challenges.
The Result of All This
This potent combination of factors can easily lead to the autistic person releasing huge amounts of stress hormones and therefore being in a constant state of arousal and high-alert, leading to a pervasive anxiety and in turn to nervous exhaustion, along with the feelings of inadequacy and guilt which are likely to accompany this. There is no chance of recovery time after any one stressful experience before the next one comes along. Over time, this can severely compromise the ability of the body to function, so all remaining available resources are diverted to critical functions and just to keep going for the present moment, leaving nothing to spare for supporting any recovery. The long-term health implications of this are obvious, and could well be the key reason why life-expectancy for autistic people is so much lower than for the population as a whole.
As Dora Raymaker points out in her working definition, this can lead to a withdrawal from life. Our article on Trauma gives a couple of examples of how this can occur. In short, the exhaustion and overwhelm is so great that the person does not have the resources to participate in activities that would otherwise give them fulfilment. The widespread assumption that autism is responsible for a lack of social interest is not correct; it’s just that the autistic person has been so depleted of energy that they are no longer able to act on that interest, in the same way that someone who had just lost their home and job and was undergoing enormous stress and uncertainty would be unlikely to feel to going out and socialising, even though they might have loved that in calmer times. Autistic people in the midst of burnout don’t have many calmer times.
What Can We Do About It?
There are few truly effective solutions to really turn this around, especially when it occurs later in life. General advice seems to be to take a step back from daily life to take the time and space to recover, stop trying to live up to expectations that weren’t created with you in mind, and so on (Raymaker suggests this article that goes into some similar strategies). These make sense, but may not lead to great improvements in all cases and may necessitate a radical change of lifestyle that may feel unachievable or come with a level of stress that is counter-productive.
Really speaking, each person is on their own in terms of finding a solution or partial solution. In my own case, Heartfulness meditation has given me a greatly increased sense of balance, groundedness and inner strength, without which I’m pretty certain I would not be alive today. My own autistic burnout – severe though it still often feels – is only a fraction of what it would have been without this, and I have been given an underlying sense of inner-joy and even gratitude, which could never otherwise have been possible.
How Can We Protect Autistic Children From Developing This?
The younger a child is, the more that can be done to help them avoid developing this later in life. Prevention is always better than cure, which is why Transforming Autism is so focused on Early Intervention.
Providing children from a very early age with an environment based on Containment and thus helping them develop confidence, self-acceptance and real resilience can lay a really great foundation for a more successful future. Similarly recognising, understanding and valuing the Sensitivity of an autistic child not only affirms them and enables them to better accept and understand themselves, but also enables them to learn from an early age (when learning is very often much more effective) how to optimally manage and make the best of their sensitivity.
Burnout is not inherent in the autistic condition. I would say that it isn’t even associated with it. Anybody would burn out if the levels of adversity that they were subjected to were high enough. That is the only thing that’s behind autistic burnout – the adversity autistic people are subjected to by the prevailing culture in society. In many ways that’s a good thing to realise, because it holds open the possibility that this situation can be changed through real awareness, acceptance and mutual respect. Let us use this Autism Awareness Day as the moment we all start to work toward that.
Transforming Autism is a new UK Registered Charity (1173134) dedicated to the very best and most effective early intervention to relieve anxiety, provide affirmation and understanding and create a very strong foundation for the future for autistic children. We’re raising money to launch our first face-to-face services. You can find out more about them here, or click here to make a donation to help make them possible.