Hello, and welcome back to The Autistic Writer. I’m going to use this week’s blog to give a quick explanation of the key points around autistic burnout. But before I do that, I’m just going to share an update on my own mental health and continuing burnout.
It’s been a month since I last blogged, and this is because I have not been well. A few weeks ago, my mental health took a nosedive. To say I was struggling would be an understatement. I tried to continue normally, but I think that behaviour was just an aspect of lifelong ingrained autistic masking. Anyway, I got to the point where I couldn’t function properly anymore, and had to go into my shell for a while. The official diagnosis from my GP is depression, although I have spoken at length with him about my anxiety and OCD, too. The thing is, all my mental health problems are underwritten by the pressure of being an autistic person in a neurotypical world. I have improved, and I’m now ready to try to re-enter the world, and carry on with things. I have no doubt people will ask me if I am better now, and the short answer would be “yes”. But people tend to think of better as recovered, and the truth is it’s unlikely I will ever fully recover. I am thoroughly burned out, and each time I bounce back from a period of depression, the bounce is a little less high.
Whenever I hit a period of depression, people will often ask me what triggered it. Giving an answer to neurotypical people who do not understand autism is not easy. If I say burnout, I will often be perceived as a drama queen. If I say autistic burnout, it sounds like something I’ve made up. The other option is to go through the long list of triggers and circumstances that create burnout, but I’ve had bad experiences with this approach in the past. It’s difficult for a neurotypical person to accept that so many of the things they consider normal parts of life can affect an autistic person so deeply and so debilitatingly. Furthermore, even when they listen to the list, what usually happens is they take the first couple of items on that list, assume they are the real issue, suggest tick-in-a-box solutions, and assume the problem is solved. When I say tick-in-a-box solutions… if you have ever had a period of mental illness such as depression, and your employer has offered you their in-house service, which turns out to be a handful of telephone or video consultations with a third party who just suggests anti-depressants, CBT, or exercise, then you’ll know what I mean. I’m not demonising antidepressants, CBT, or exercise, by the way. It’s just that if you are an autistic adult, you’ve almost certainly been over all these options several times with different mental health professionals, and quite often, these solutions do not work because they do not address the underlying issue: Being autistic in a neurotypical world.
Having said all that, everyone is different, and sometimes traditional methods can help. I’m trying some new anti-depressant meds, and this has coincided with me feeling better. Unfortunately, these meds do not change the world I live in. Long term, I know my burnout will progress unless I can do something radical to change my circumstances in such a way that my autism is fully accommodated. At present, my future in a world that does not understand or accommodate autistic people seems bleak. Enough about me. Let’s get into the nitty-gritty of autistic burnout…
What is Autistic Burnout?
The first thing we have to cover off is that different people use the term autistic burnout in different ways to mean different things. Terminology in an emerging field is always tricky, and autism is still an emerging field in terms of study – it’s only about 80 years ago that Hans Asperger started his work on the subject, and the study of autism has been held back and misdirected by people with problematic agendas ever since. And then we have the problem that even when a technical definition of autistic burnout might be put forward, colloquial uses will still veer off from it. I’m going to try to cut through this confusion. Not everyone will agree with my assessment, but at least this is a starting point for anyone coming to the subject for the first time, or anyone who is just plain baffled by the noise out there.
Let’s start with ordinary burnout – that’s the type of burnout experienced by non-autistic people. It 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 get back to something like normal, although lifestyle changes might be required. In popular culture, it’s usually taken 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. Basically, people push themselves too hard, get exhausted, need time out, and might need to make some changes.
When it comes to autistic burnout, we have a number of competing definitions, some of which are better described by alternative terms. Some of the noise out there that muddies the waters comes from non-autistic parents of autistic children who deploy terms they don’t fully understand, and these uses get picked up on and repeated. So let’s work through the four main issues that get labelled as autistic burnout:
- Meltdown: Sometimes an autistic person can become overwhelmed by their immediate circumstances. This can be a sensory overload, a social overload, an overload of competing demands, or a combination of any of those issues. The overwhelm results in an extreme emotional reaction. People who don’t understand what is going on in this situation unfortunately use terms such as tantrum or breakdown to describe the autistic person’s behaviour. Some people also call this a burnout. In fact, what is actually going on is an autistic meltdown. The use of the term burnout to describe this is inappropriate, but not as offensive and misleading as calling it a tantrum, which it most definitely is not. 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, let’s call a meltdown a meltdown. People who think the term meltdown is demeaning tend to be non-autistic people who mean well but don’t really get it. We need to get to a place where autistic people do not feel shame for being overstimulated or over-pressured, and suffering meltdown as a result. The autistic person will emerge from the other side of the meltdown, and will usually need a period of recovery; we sometimes talk about the hangover effect of a meltdown.
- Shutdown: The overstimulation, social overload, and competing demands mentioned above 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, the person 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 just go quiet. 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 it is more accurate to call it a shutdown. As with meltdowns, the autistic person will emerge from the other side of a shutdown, but there are usually some lingering hangover effects that require a period of recovery.
- Transient Burnout: I talked about normal or non-autistic burnout as usually resulting from a person pushing themselves too hard. Imagine a situation in which just trying to survive and get by in life at any kind of level feels like pushing yourself too hard. This is the day-to-day reality for autistic people. We live in a world largely designed for the neurotypical person. Autistic people are assaulted daily by sensory overstimulation. We are also faced with social interactions that we struggle to get to grips with, and which can lead to misunderstandings that in turn lead to us being out-grouped or otherwise ostracised. Our approach to life and our autistic behaviour, which can be markedly different to the neurotypical, often paints targets on our backs, meaning we become 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, but there is much, much more. Often, 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. This can include physical pain, nausea, gastro problems, bladder problems, sexual dysfunction, sleep problems, eating problems, a sense of hopelessness, suicidal ideation, and more. Suicide remains a leading cause of death among autistic people. When burnout kicks in like this, 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 issues, but there is no pill or injection to cure or prevent burnout. Often, after a period of transient burnout, the autistic person will feel like they are unable to bounce back fully. Recovery feels incomplete, or like there has been permanent damage done that can never be repaired. This is true autistic burnout – permanent damage inflicted on an autistic person simply as a result of trying to cope with the neurotypical world.
- Long-Term Burnout: An autistic adult will build up a long history of periods of transient burnout as described above. Long-term burnout refers to the reduced functioning that comes as a result of the periods of transient burnout. When we are long-term burned out, we are less capable of dealing with the neurotypical world than before. This will often mean that we are unable to maintain the masking behaviours that we had previously used to fit into neurotypical society. It is common for autistic adults to have money problems, to be in lower-paid jobs than neurotypicals, or to be unemployed. It is common for autistic people to live alone, and to be socially isolated. Loneliness can be a huge problem for 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. Then there are the mental health issues, such as depression, anxiety, OCD, and so on, that can be caused by and/or exacerbated by the social problems that result from burnout. These are all stress factors, and high levels of stress usually lead to high blood pressure, which is strongly linked to heart disease. Apart from suicide, heart disease is another leading cause of death among autistic people. Make no mistake, burnout is one of the most serious problems affecting autistic people, and much of it could be mitigated by increasing social acceptance of autistic people, and taking seriously the need for accommodations that would make life easier for us.
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That’s all for this week. Until next time, take care.
Darren
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Why Do I Write This Blog?
When I first found out I was autistic, I was a middle-aged adult and I knew nothing about autism. I quickly learned that there was a serious shortage of information and resources for adults in my situation. With this blog, I aim to inform about autism and autism-related issues as I learn, hopefully helping people who are on a similar journey of discovery. Like anyone who writes a blog, I want to reach as many readers as possible; if you like what I’m doing, please share it with your friends and followers. I will never hide this blog behind a paywall, but running the website does incur costs. If you would like to support, feel free to make a small contribution at BuyMeACoffee.Com.
You might also be interested in David Scothern’s blog, Mortgage Advisor on FIRE, which covers a range of topics including mental health issues and financial independence.
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