Hello, and welcome back to The Autistic Writer. Today, I am discussing one of the most important problems faced by autistic people: Autistic burnout.
my story
Around the time I turned 50 years old, I was beginning to struggle to function in all areas of my life. Something – I didn’t know what – was seriously wrong. I had been diagnosed with depression repeatedly throughout my life, but this felt like more than depression. When I tried to describe to people close to me how I was feeling, the best metaphor I could come up with was this:
Every time I had been through a bout of depression over the previous few years, I had bounced back, but never as high as before. Each time, I felt like a piece of me had been chipped away, never to be replaced. And now, it had reached a tipping point. Going to work, socialising, trying to do any task, felt overwhelming. And yet somehow, I was usually presenting a brave face to the world.
I was autistic masking; covering up my difficulties in order to fit in. I kept telling myself I just had to “man up.” But what exactly were these difficulties I was covering up?
I was still years away from even suspecting I was autistic, much less getting my diagnosis. But I was, nevertheless, starting a descent into what would prove to be a catastrophic autistic burnout that would fundamentally change me as a human being, and eventually lead to my diagnosis.
What is Autistic Burnout?
The first important point to understand is that different people use the term autistic burnout in different ways to mean different things.
Terminology in an emerging field is changeable, as research develops and definitions gradually settle. Autism is still an emerging field, as it has only been systematically described and studied for a few decades.
With autism, the field of study has a great deal of technical terminology, and a corresponding plethora of casual language in the media and popular culture. Often, public understanding of autism issues is clouded by casual misuse of terms. It is common for someone to hear or read a term, and assume they know what it means, without actually checking. A great example of this is the endemic public misunderstanding of the term autism spectrum, which was covered in an earlier article.
Even when a firm technical definition of autistic burnout is put forward, colloquial or casual uses will still diverge from it. In this article, I am going to try to cut through the confusion, and explain what is meant by autistic burnout, and why the subject is of great importance for understanding autism and autistic people.
non-autistic burnout
Ordinary burnout – the type of burnout experienced by non-autistic people – is generally characterised as long-term exhaustion resulting in adverse effects on mental and/or physical health. Symptoms include depression, physical pain, lethargy, reduced productivity, sleep problems, sexual dysfunction, and so on.
It is usually expected that with rest and a period of recovery, the burned-out person will recover, although lifestyle changes might be required.
In popular culture, it is usually understood that someone becomes burned out because they have pushed themselves too hard, often in career settings. In fact, burnout is often associated with people in high-profile, high-pressure careers, such as top lawyers, surgeons, investors or athletes. Essentially, people push themselves too hard, get exhausted, need time out, and might need to make some changes to recover.
This is very different from autistic burnout, though. Autistic burnout results simply from trying to survive in a world that does not accommodate autistic people.
Before explaining autistic burnout, it is necessary to point out some of the misuse of the term. Some people say “autistic burnout” when they are actually referring to a different thing that already has a name:
autistic Meltdown
Sometimes, an autistic person can become overwhelmed by their immediate circumstances. This can be sensory overload, social overload, an overload of competing demands, or a combination of any of these. The state of being overwhelmed can result in an extreme emotional reaction. People who don’t understand what is going on in this situation, unfortunately, often use inaccurate and offensive terms such as tantrum or breakdown to describe the autistic person’s behaviour. Some people also call it burnout. In fact, what is actually going on is not burnout, but an autistic meltdown.
An autistic meltdown occurs when an autistic person has been pushed beyond their limits by immediate circumstances that might not trigger a non-autistic person.
Understanding the meltdown requires understanding how autistic people work. But as far as terminology goes, a meltdown is a meltdown; not burnout. The term meltdown is not degrading or insulting; it is an accurate technical term.
An autistic person will emerge from the other side of a meltdown, and will usually need a period of recovery. A meltdown is an extreme emotional response to being overwhelmed. A meltdown is not burnout.
Autistic Shutdown
The overstimulation, social overload, and competing demands faced by an autistic person can sometimes result in an outcome that is very different from a meltdown. Called an autistic shutdown, this is when the autistic person tries to withdraw from the problem, and that withdrawal can last until well after the triggers have been removed.
What exactly goes on in an autistic shutdown can vary according to the individual.
Physically, a person in shutdown might go to the floor, or a bed or chair, and lie down or curl up. They might close their eyes. They might not respond to stimuli, and refuse to communicate. They might be emotional. They might engage in stims to the exclusion of other activities. Depending on how severe the shutdown is, it might not be immediately apparent to other people what is happening; the autistic person might just appear to be going quiet, or wanting to be alone.
A shutdown is always serious because the autistic person has just been pushed beyond the limits of endurance. Some people insist on labelling this situation as burnout, but that is incorrect; it is a shutdown.
As with meltdowns, the autistic person will emerge from the other side of a shutdown, but there are usually some lingering effects that require a period of recovery. An autistic shutdown is a physical and psychological response to being overwhelmed. A shutdown is not burnout.
Autistic Burnout
The day-to-day reality for autistic people is a life of struggling to deal with sensory overload, social overload, alienation, and anxiety. We live in a world designed for the neurotypical person.
Autistic people are often prey to bullies. We find ourselves overlooked in educational, sporting, or professional situations. While some of us thrive in solitude, some of us become lonely and isolated due to social out-grouping.
To be able to function in neurotypical society, many of us resort to masking behaviours, either adopting behaviours that feel alien to us, or suppressing autistic behaviours that come naturally to us. The effects are devastating in terms of the damage to mental health and the physical exhaustion that results. Anxiety and clinical depression are just two of the effects.
The long-term effects of trying to cope as an autistic person in a neurotypical world inevitably lead to autistic burnout.
When burned out, an autistic person will function at a reduced level in all areas of life. This can affect work, relationships, and self-care. We might struggle to communicate how we feel, or to communicate anything at all. We will feel an overall sense of malaise; just not feeling well. Symptoms include, but are not limited to:
- physical pain
- nausea
- gastrointestinal problems
- bladder problems
- sexual dysfunction
- sleep problems
- eating problems
- a sense of hopelessness
- suicidal ideation
- loss of skills
The loss of skills can be one of the most troubling symptoms of autistic burnout. The burned-out person might lose the ability to carry out basic life tasks, and/or partially or completely lose learned skills.
When autistic burnout occurs, the autistic person needs a significant period of recovery away from pressures, demands, and triggers. Medical treatment might be required to help with the accompanying health problems, but there is no medical treatment or intervention to cure or prevent burnout.
Autistic burnout can happen at different levels of severity.
Transient autistic burnout
Often, after a period of transient burnout, the autistic person will recover, but feel like they are unable to fully bounce back to their previous levels. Recovery feels incomplete, or like there has been permanent damage done that can never be repaired. This is true autistic burnout – permanent psychological damage inflicted on an autistic person simply as a result of trying to cope with the neurotypical world.
Long-Term autistic Burnout
An autistic person will build up a long history of periods of transient burnout throughout their life. Long-term burnout refers to the reduced functioning that comes as a cumulative effect of the periods of transient burnout.
Long-term autistic burnout has all the symptoms of transient burnout, to a more severe degree. The loss of skills can be profound. The person will have a lower level of resistance or tolerance for all kinds of pressure and stress. Severe depression will result. The person’s autistic traits will be magnified. The ability to mask will be profoundly reduced. The autistic person will be unable to do things or go places that they could before. The base level of anxiety is significantly increased. Mental health problems such as OCD and PTSD can co-occur.
When long-term burned out, autistic people are simply less able to deal with the neurotypical world than before.
related problems
It is common for autistic adults to have money problems, to be in lower-paid jobs than their neurotypical peers, or to be unemployed. It is common for autistic adults to live alone, and to be socially isolated. Loneliness can be a significant problem for those autistic people who do not thrive in isolation.
These are just some of the social issues affecting autistic people that can be linked to long-term burnout. These problems can be both contributory causes of, and effects of, autistic burnout.
The symptoms and causes of autistic burnout are all stress factors. High levels of stress often lead to high blood pressure, which is strongly linked to heart disease. In addition to suicide, heart disease is another leading cause of death among autistic people.
When you consider how debilitating autistic burnout is, it becomes obvious that using the right terminology is important. Meltdowns and shutdowns are serious, but misidentifying them as burnout creates confusion, and potentially trivialises autistic burnout. It is not trivial; it is a genuine health problem.
We are beginning to see GPs giving diagnoses of autistic burnout, as understanding is improving. This is an important step for validating the suffering experienced by autistic people when they inevitably go through this debilitating condition.
Autistic burnout is one of the most serious problems affecting autistic people, but it could be mitigated by increasing social acceptance of autistic people, by simply treating us fairly and with normal human compassion, and taking seriously the need for accommodations that would make life easier for us.
That’s all for this time. Take care.
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