Autistic burnout is a state of physical and mental fatigue, heightened stress, and diminished capacity to manage life skills, sensory input, and/or social interactions, which comes from years of being severely overtaxed by the strain of trying to live up to demands that are out of sync with our needs.
Autistic Burnout: “My Physical Body And Mind Started Shutting Down”
Header image: “Burnout” by Marissa Paternoster
“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.” In other words, autistic burnout is the result of being asked to continuously do more than one is capable of without sufficient means for recovery.
THINKING PERSON’S GUIDE TO AUTISM: Autistic Burnout: An Interview With Researcher Dora Raymaker
I’ve experienced several moments of burnout in my life and career. Being something that I neurologically am not is exhausting. Wearing the mask of neurotypicality drains my batteries and melts my spoons. For a long time, for decades, I didn’t fully understand what was going on with me. I didn’t understand the root causes of my cycles of burnout. Finding the Actually Autistic community online woke me to the concept of autistic burnout. When I found the community writing excerpted below, I finally understood an important part of myself. Looking back on my life, I recognized those periods when coping mechanisms had stopped working and crumbled. I recognized my phases and changes as continuous fluid adaptation.
Being autistic means a lifetime of fluid adaptation. We get a handle on something, develop coping strategies, adapt and we’re good. If life changes, we many need some time to readapt. Find the new pattern. Figure out the rules. Test out strategies to see what works. In the mean time, other things may fall apart. We lose skills. We struggle to cope with things that had previously been doable under more predictable conditions. This is not regression to an earlier developmental stage, it’s a process of adapting to new challenges and it’s one that we do across a lifetime of being autistic.
Autistic Regression and Fluid Adaptation | Musings of an Aspie
These periods of burnout caused problems at school and work. I would lose executive function and self-care skills. My capacity for sensory and social overload dwindled to near nothing. I avoided speaking and retreated from socializing. I was spent. I couldn’t maintain the facade anymore. I had to stop and pay the price.
Autistic adults described the primary characteristics of autistic burnout as chronic exhaustion, loss of skills, and reduced tolerance to stimulus. They described burnout as happening because of life stressors that added to the cumulative load they experienced, and barriers to support that created an inability to obtain relief from the load. These pressures caused expectations to outweigh abilities resulting in autistic burnout.
“Having All of Your Internal Resources Exhausted Beyond Measure and Being Left with No Clean-Up Crew”: Defining Autistic Burnout | Autism in Adulthood
I now know myself and my autistic operating system much better. That self-awareness has helped me greatly, but I still must live in a society that does not understand. Being an autistic seen as “high-functioning” means having your identity doubted and questioned. Exhausting efforts to pass and mask are given little credit. They are tossed aside with an “I do that too” and held against us in those moments of meltdown and burnout when we can longer pretend at neurotypicality. The rewards for passing are the familiar ableist tropes of invisible disability and the expectation to keep on passing, forever.
Common life strategy for autistic people: achieve/overachieve until burning out and maybe the overachievement will result in enough social and economic capital to see you through the burnout. High cost, high failure rate, inaccessible to many.
@theoriesofminds
Don’t dismiss an autistic persons difficulties just because all they’ve shown you is their strengths.
What is AUTISTIC BURNOUT? A guide from Autistic Women & Nonbinary Network:
The writing below helped me understand myself. If you are autistic, you will likely see yourself in these perspectives. They might change your life. If you are not autistic, this information will help you better empathize with neurodivergent friends, family, and coworkers. Empathy is a two-way street. Part of the stress of burnout is a lack of empathy and understanding from neurotypical society. There is a mutual incomprehension that occurs between people of different dispositional outlooks and personal conceptual understandings. Empathy is a human problem marked by a deficit in imagination. Read on, and develop imagination and empathy.
Deciphering human madness Bombarded with psychology Interrogated by droid vermin Scrutinised by vacant ghouls I'm burnt out from masking You're burnt out from masking They're burnt out from masking We're all burnt out from masking Enduring chaos rites by force Lost in a maze of shifting size Phasing out of time constantly I can't speak in this dimension Cataclysmic thoughts trapping me Crushed under a world of nonsense Decimated by intrusion Spellbound by the death of a dream Burnt Out From Masking by Tommy Concrete
People are tricky you can't afford to show Anything risky Anything they don't know The moment you try Well kiss it goodbye
When autists attempt to blend in it is to avoid suffering the consequences of non-conformance – and not to gain or maintain social status.
Taking ownership of the label – Autistic Collaboration
We’re all burnt out from masking.
Autistic Burnout
Autistic burnout, it permeates every area of your life.
Burnout can happen to anyone at any age, because of the expectation to look neurotypical, to not stim, to be as non-autistic as possible.
Being something that neurologically you are not is exhausting.
Ask an Autistic #3 – What is Autistic Burnout? – YouTube
If you saw someone going through Autistic Burnout would you be able to recognise it? Would you even know what it means? Would you know what it meant for yourself if you are an Autistic person? The sad truth is that so many Autistic people, children and adults, go through this with zero comprehension of what is happening to them and with zero support from their friends and families.
If you’re a parent reading this, I can confidently say that I bet that no Professional, from diagnosis, through any support services you’re lucky enough to have been given, will have mentioned Autistic Burnout or explained what it is. If you’re an Autistic person, nobody will have told you about it either, unless you’ve engaged with the Autistic community.
Autistic Burnout is an integral part of the life of an Autistic person that affects us pretty much from the moment we’re born to the day we die, yet nobody, apart from Autistic people really seem to know about it…
An Autistic Burnout – The Autistic Advocate
Then, life got harder each day because of the effort needed to pull off the passing in order to maintain. But, it was also wonderful to not have to constantly worry at the grocery store. It is hard to grocery shop when you live in poverty because generally the more healthy the food the more it costs. It means you can have a few healthy things, but not enough to really have an overall healthy diet. I enjoy eating healthy.
But here is the rub – even though I now look “normal” even though I am autistic, it is too exhausting to maintain. I am noticing across my life that whenever I learned a new skill, the bar was set higher and I was, from that point forward, expected to always have that skill available and to use it even if using the skill depleted ongoing large amounts of personal resources.
In my life, because I have been able to learn new skills with the result of looking more neurotypical, I have dug a hole for myself that I cannot now get out of as the bar of expectation for me to look/act “normal” has been raised. I am currently passing in public so well that people often can no longer tell by looking that I am autistic.
I know in the field of autism we have made it our goal to get autistics to look neurotypical as we hold that as the prized norm. Many people congratulate themselves when it happens. I am here to tell you (just as countless others from my tribe have done) that this may NOT wind up to be a good thing for autistic people.
Once we appear “normal” we are expected to always appear normal. To do so comes at a great expense. Ultimately, for me, passing as “normal” means that I am now a fake person, never able to be myself without putting my ability to make a living in jeopardy. Because I am close to retirement age I am hoping I will make it.
‘Autistic Burnout’ by Judy Endow, MSW
Regression can refer to a specific set of skills or abilities:
- progressively losing the ability to speak
- deteriorating executive function
- reduced memory capacity
- loss of self-care capabilities
- loss of social skills
- reduced ability to tolerate sensory or social overload
It can also refer to a general loss of the ability to cope with life or to accomplish all of the necessary daily tasks of living.
Often a period of autistic regression begins during or after puberty or during the transition to adulthood (late teens to early twenties). Mid-life is also a common time for autistic people to experience burnout or regression. In fact, many people (including me) list a noticeable change in their ability to cope with daily life as one of the reasons for seeking a diagnosis. However, autistic regression can happen at any age and is often preceded by a major life change or a period of increased stress.
A better analogy than regression is that of the demands of life exceeding a person’s resources.
Imagine a hot summer day in a city. Everyone turns on their fans and air conditioners to beat the afternoon heat, exceeding the ability of the power grid to supply power to all of the homes and businesses in the city. To cope, the electric company might implement a brownout–an intentional reduction of power to each building–or a series of rolling blackouts in which some locations get full power while others get none.
The autistic brain seems to work much the same way when faced with excess demands on resources. There are days or weeks or months when the demands of life are too great and our brains decide to implement a brownout or a rolling black out. Some coping skills or abilities are temporarily taken offline or run at reduced efficiency.
Many of the challenges that come with being autistic are pervasive, meaning they’re with us forever. Even if they aren’t active at all times, they still exist and may reappear when a particular coping strategy gets temporarily taken offline because the brain needs to reallocate resources for a more urgent task.
When this happens, an issue that was previously “fixed” can suddenly appear to be “broken” again.
In fact, nothing has been fixed or broken. We simply have very fluid coping strategies that need to be continuously tweaked and balanced. Because a child or adult goes through a period of having very few meltdowns, that doesn’t mean they’ll never have meltdowns again. If something in their life changes, for example the hormonal storms of puberty, they’ll need to develop new coping strategies. And until they do, they may begin having meltdowns due to the mental, emotional or sensory overload caused by the new development.
Being autistic means a lifetime of fluid adaptation. We get a handle on something, develop coping strategies, adapt and we’re good. If life changes, we many need some time to readapt. Find the new pattern. Figure out the rules. Test out strategies to see what works. In the mean time, other things may fall apart. We lose skills. We struggle to cope with things that had previously been doable under more predictable conditions. This is not regression to an earlier developmental stage, it’s a process of adapting to new challenges and it’s one that we do across a lifetime of being autistic.
Autistic Regression and Fluid Adaptation | Musings of an Aspie
I’ve been thinking a lot about how my ability to mask and camouflage has really taken a nose-dive in the past years. I used to be better at this — or so I tend to think. Surely, there must be a reason — other than rank ignorance and denial — for why I’ve been under the autistic radar for so long… and why when I was younger and thought about “acting out” to get attention, my efforts were usually immediately curtailed by something inside me that says, “No – wait – don’t do that.”
I’ve had a sort of internal thermostat that’s regulated the “temperature” of my autistic tendencies, which modulated them in public.
But in the past years, I’ve noticed a sharp decline in my ability to mask and camouflage my markedly autistic behavior (in public, not privately). And I realize I’m acting a helluva lot more autistic now, than I did in my earlier adulthood.
Who has the energy? Of #autism and masking and failing to fit in – Aspie Under Your Radar
For twelve or more hours per day, for years, I had been trying to pass for neurotypical without realizing I had been doing so. I had exhausted myself in the process. I never thought much of it at the time. Until it happened again.
About four years ago, I was enjoying a fairly leisurely life of working part time from home. I had been working from home doing freelance work for a few years. I didn’t have a spouse or children. My life wasn’t particularly stressful compared to most peoples’.
I just didn’t feel like doing anything. I had no ambition at all, almost all of a sudden. I didn’t feel like talking to the few friends I usually kept in touch with. I didn’t feel like going to the places I used to like to go. I wasn’t sad or anxious. I just felt like I had shut down. It lasted for a while, and people became concerned about me.
For seven months, I didn’t leave the house. I had started ordering my groceries online. I didn’t have any reason to go anywhere. I wasn’t agoraphobic or afraid to leave my apartment. I just didn’t feel like it. My mother became concerned that I was severely depressed, but I didn’t feel depressed. I had been depressed in the past, and this didn’t feel the same. I couldn’t articulate why this was different than depression, but I knew in my heart that it was. This was something else.
I take inventories of the things I do each day and how those things affect me. It dawned on me the other day that the main reason I do this is because I don’t want to experience burnout again. As much as I try to avoid meltdowns, because my meltdowns can be scary, I also try to avoid longterm shutdowns that might cause me to lose my job (which I can’t afford to lose). I have to be able to function, and I try to maintain my functioning by not wasting too much energy on things that can be let go. Whenever I slip back into focusing too much of my energy on the wrong things, I start to feel burnt out again.
Burnout | aspified
“Aspie burnout” is a colloquial term, that the clinical world doesn’t seem to acknowledge as a genuine part of the autistic spectrum, resulting from the attempts to “be normal”, fit in and keep up. Here, I think it is very useful to draw peoples’ attention to Christine Miserandino’s ‘spoon theory’: http://www.butyoudontlooksick.com/wpress/articles/written-by-christine/the-spoon-theory/ because when I read it, I saw such immense parallels with living with Asperger’s/autism. It can creep up on you, it can hit any time, but for sure, most Aspies will have experienced Aspie burnout by the time they hit 35.
Basically, the higher functioning you are, the more others expect of you and also, the more you push yourself. You have an invisible disability, you look normal and have no apparent physical difference. So why can’t you behave and carry on like everyone else? Sure, everyone gets tired, sure they also can get burnout from pushing themselves too hard. But the difference is this: we get it from just existing in a neurotypical world, a world that doesn’t accept our differences or make allowances for them. Mental health issues such as anxiety and depression are greater in high-functioning autistics, because of trying to fit in and finding it so difficult. Because we are acutely aware of our differences and our failings, but we are just as affected by them as lower-functioning autistics. So we kind of have the rawest deal.
When you hit burnout, you can take a long time to recover. Even one stressful day, for someone on the spectrum can mean days or even longer, of hiding away to recover afterwards. So imagine what impact it has if you try day after day to continue living at a level, which to others is ordinary but to you is a massive challenge. And once you burnout, your coping capacity is diminished. That means, even when you recover, if it happens again, it can happen quicker and take less to provoke it.
Suzanne C. Lawton refers to Aspie burnout as The Asperger Middle-Age Burnout in her book Asperger Syndrome: Natural Steps Toward a Better Life. On page 33 it says:
“She had noted this same behavior and attributed it to adrenal exhaustion from years of pumping out high levels of epinephrine from prolonged severe anxiety. Not only were these AS people dealing with their regular levels of anxiety, but they were also working extremely hard to maintain a façade of normalcy.”
Source: Aspie Burnout | Planet Autism Blog
I have been undiagnosed for most of my life so have subconsciously tried to hide or push through my autistic characteristics to fit in to the point where I physically and mentally could not do it any more, but surely we should be protecting young autistic people from the same fate?
We cannot be ‘cured’ only, by an extreme effort of will, suppressed. We should be teaching young autistic people to know their limits. It should not be celebrated that autistic people can act neurotypical, especially as we do not know the recovery time that this effort requires and do not have accommodations in the ‘established’ society to allow this healing to take place.
Source: Long-term Burnout – A Little Off the Mark
In autistic burnout we come to the end of our resources that enable us to act as if we are not autistic in order to meet the demands of the world around us. For me these demands have included things like being able to raise my children and maintain employment. I have gone through a few distinct periods of burnout and have successfully managed them by withdrawing from the world as best I could while carrying on daily commitments to children and to employment.
I am thinking the combination of autistic burnout along with aging has made this episode quite different than the other times burnout has been problematic. For almost a year now, I have been experiencing somewhat of a burnout, but the difference is that I am not able to get past it like I have previously.
Over the months I’ve ramped up my sensory regulation. I am now spending about four hours per day devoted to keeping myself regulated. Some of the things I do include swimming, walking, bike riding, massage, and absolute quiet. In the past all of these things worked well. Now all of these things just sort of work. It means that no matter how much I do I never feel completely regulated.
Source: Autistic Burnout and Aging • Ollibean
Source: KATiE MiA/Aghogday: Burnout on the Autism Spectrum
Burnout, long-term shutdown, or whatever you want to call it, happens generally when you have been doing much more than you should be doing. Most people have a level to which they are capable of functioning without burnout, a level to which they are capable of functioning for emergency purposes only, and a level to which they simply cannot function. In autistic people in current societies, that first level is much narrower. Simply functioning at a minimally acceptable level to non-autistic people or for survival, can push us into the zone that in a non-autistic person would be reserved for emergencies. Prolonged functioning in emergency mode can result in loss of skills and burnout.
The danger here may be obvious: It may be the people most capable of passing for normal, the most obvious “success stories” in the eyes of non-autistic people (some of whom became so adept at passing that they were never considered autistic in the first place), who are the most likely to burn out the hardest and suddenly need to either act in very conspicuously autistic ways or die.
To the outside world, this can look as if a forty-year-old perfectly normal person suddenly starts acting like a very stereotypically autistic person, and they can believe that this is a sudden change rather than a cumulative burnout eventually resulting in a complete inability to function in any way that looks remotely normal. The outside world is not used to things like this, and the autistic person might not be either. They might look for the sudden onset of a neurological disorder, or for psychological causes, and receive inappropriate “treatments” for both of these, when really all that has happened is massive and total burnout.
This can also look much less spectacular, or be much more gradual, and it can happen in any autistic person. Sometimes, with more supports or a change in pace or environment, the skills lost come back partially or totally. Sometimes the loss in skills appears to be permanent — but even that can be somewhat deceptive, because sometimes it is simply that the person can no longer push themselves far beyond what their original capacity was in the first place.
Sometimes this kind of burnout is what leads adults to seek diagnosis and services. Unfortunately, many service systems that would otherwise support people in their own homes, cater only to people who were diagnosed in childhood, and will look at someone with a very good neurotypical-looking track record of jobs, marriages, and children with suspicion. They need to be made more aware of this possibility, because there’s a high chance that an adult in this situation could end up jobless, homeless, institutionalized, misdiagnosed, given inappropriate medical treatment, or dead.
People training autistic children to look more normal or refusing to tell their children they are autistic also need to be aware of this possibility, because this is the potential end result ten, twenty, thirty, or forty years down the road. This is one of the biggest reasons for teaching us to learn and grow as ourselves, accounting for our strengths and weaknesses rather than as counterfeit neurotypicals.
Source: Help! I Seem to be Getting More Autistic!” ARTICLE
In summary Autistic Burnout is an accumulation of years of trying to appear normal and cope as an Neurotypical (NT). The strain and drain of it suddenly becomes too much and an autistic person (me in this case) falls apart. All autistic symptoms get worse. Trying to manage all the every day normal activities are way too much. It is overwhelming and stressful for the person involved.
Source: Autism, Motherhood and Advocacy.: Autistic Burnout
My description of an inability to cope with overload might sound familiar if you read my post about meltdowns. That’s because it is similar. In fact, I’d say that burnout is a type of meltdown – one that occurs over a much longer timescale. It fits the same niche: it’s my brain’s last resort, an extreme emotional release as a result of overload. But it’s a response to a chronic energy debt, instead of an acute one.
Burnout eventually does have the intended effect – it stops the overload. Because it stops my ability to function at all, which handily includes my ability to go to school or work or do the things that were draining my energy faster than I could replenish it. Just like a meltdown forces me to get out of whatever situation was acutely overloading me.
It’s difficult to explain the concept of limited energy to people who haven’t experienced it. It’s even more difficult to explain when I actually have functioned with a full-time occupation before. If I now say I’m unable to do that, it either seems like I’m flat-out lying, or like I’m deliberately ‘disabling’ myself by limiting what I can do. But neither of those is the case. I never knew that most people don’t feel overwhelmed and overloaded all the time. I did know that most people don’t have mental health breakdowns like clockwork every few years – but I didn’t know why that happened to me and not others. Maybe most significantly, I didn’t know that energy limits existed, let alone that the idea could explain my experiences.
Now that I do know those things, I’m not lying about my past or trying to make myself worse off than I am. I’m finally being honest, to myself, about my own abilities. If that looks like I’m limited myself, it’s only because I’ve pushed myself way too hard for my whole life until now. It might look like I now have the life of a ‘more’ disabled person than I have before. But it’s actually the opposite. I am just as disabled as I always have been, but now I am taking some control over how my life works. I’m looking forward to finding out what happens.
Source: Burnout | autisticality
Her brain is telling her that people only tolerate her because she does things for them and the minute they realize she isn’t the symbol of strength and endurance they built her into, they will react with hatred and violence. That is what they always do. She is not allowed a moment of weakness. The community needs her. They need her strength. They need her to be a symbol. Can’t she do just this one more thing?
She never wants to hear again that she is strong. She doesn’t know a way out.
Well, she knows one way out.
Radical Neurodivergence Speaking: The cost of indistinguishability is unreasonable.
This also essentially punishes Autistics for learning coping skills. They might get you through the lower grades, maybe even into high school or young adulthood if circumstances line up, but there will come a time when scripts and constant vigilance are not enough. There is always too much to process, too much to juggle, more and more things to do and ever increasing demands. Putting a veneer of “indistinguishability” on top of that is just setting us up for burnout. And then we are punished further if we can scrape together one last skill to seek help for burnout, help that doesn’t even exist. Failed indistinguishability should just fade away.
Source: Radical Neurodivergence Speaking: Indistinguishable From Peers-an introduction
The depression that overwhelmed me in response to all of this was spurred on by my frustration. I became overwhelmed by the realization that this is how people see me, that this is what people must think of me when I meet new people. How am I ever going to get through the interview process when all of these factors are counted against me and I’m unable to change them? How am I ever going to escape my current situation when I have to pass as neurotypical in order to get a new job? Because that’s what this really comes down to. I don’t pass well enough as neurotypical. I can force eye contact. I can stop myself from stimming. I can answer questions and speak eloquently. Yet none of that will matter because my face and voice still give away my neurodivergence. I’m still marked as weird or cold or not personable.
For autistics, interviews are like the master level passing test. It’s a time to get graded on how well you can hide and contort yourself into the image of a neurotypical. For many of us, we are destined to fail this test because no matter how hard we try we will never seem neurotypical. We can put on fancy clothes, force ourselves through painful eye contact, make mouth words happen fluidly, and avoid stimming, yet it’s not enough. There are still things that mark us as different. Things that we may not have any control over.
If you’re thinking that sounds like a lot, you’re right. Some autistic people find it easier than others, just as some people have an innate talent for drawing or dancing. But unlike a hobby or even a career we have to put the effort in every waking hour of every day.
Yes, as with anything that’s practised constantly, we can become very skilled at hiding how we really are. Many of us have heard the refrain, “But you don’t look autistic” in response to telling people that we are. Could you just not?
Being skilled at something does not mean it’s effortless. It might lookeffortless, but that’s the result of many years of experience and practice. Like a prima ballerina, we put so many years of training, so much effort into making it appear fluent and natural, flawless.
It’s exhausting. And what makes it harder is that many of our instinctive behaviours are things that help us cope better. Stimming reduces sensory overload, reduces our stress and anxiety. Many other behaviours either help us cope or are ways we communicate, like an autistic body language.
Source: #Autism Eclipse – The Dark Side of Passing – My Autistic Dance
In order to achieve the state described as an “optimal outcome”, a person has to internalize the belief that at some level their survival depends on hiding their differences and looking like typically developing people. A child is not likely to explicitly or consciously think in those terms, but that’s the level of focus and energy it takes for an autistic person to develop and maintain a near-typical face. For me, I internalized the sense that I was broken and that I had to at all costs hide my brokenness. And any failure reinforced that sense and made it stronger. I internalized the failures and never even really felt the “successes”. And if people didn’t treat me well, it was on some level experienced as no more than I deserved.
My way is almost certainly not the only way it can be internalized, but I don’t see any positive approach that will produce the same result. If you are even somewhat okay with who you are at your deepest levels, you will not ever be able to hide many of your differences from everyone around you almost all the time. And that’s what the “optimal outcome” requires. It’s not masking at will or when circumstance demand. It’s managing and monitoring every behavior and every interaction all the time and never, ever stopping. It’s taking every failure and building it into your internalized system to try to avoid repeating it. And all that has to happen mostly on a semi-conscious or subconscious level like the details of driving a car. If you have to think about it, you won’t be able to do it.
And the whole time, you will still be autistic.
Source: Optical Outcome for Whom?
While autistic burnout isn’t a technical term, it describes something that many people on the spectrum have reportedly experienced.
To understand why it happens, you need to know that it takes a significant amount of energyand effort for those on the spectrum to simply exist and function “normally.” Being autistic in a neurotypical world can be overwhelming enough, but if you’re also trying to “pass” as neurotypical, it can require even more energy, as it’s not natural.
As is the case with anyone, however, long-term energy reserves are limited. Due to stressful events, life changes, or simply trying to “pass” as neurotypical for too long, eventually people on the spectrum can get worn out and develop burnout—a state where they can’t keep going anymore.
Source: Why Does My Child’s Autism Seem to Be Getting Worse? | The Autism Site Blog
My experience with special education and ABA demonstrates how the dichotomy of interventions that are designed to optimize the quality of life for individuals on the spectrum can also adversely impact their mental health, and also their self-acceptance of an autistic identity. This is why so many autistic self-advocates are concerned about behavioral modification programs: because of the long-term effects they can have on autistic people’s mental health. This is why we need to preach autism acceptance, and center self advocates in developing appropriate supports for autistic people. That means we need to take autistic people’s insights, feelings, and desires into account, instead of dismissing them.
Acceptance means training mental health service providers to look at autism and other disabilities as a part of a person’s identity, rather than a problem that needs to be fixed. Acceptance means helping to create a world where autistic people don’t have to camouflage themselves as neurotypical. Acceptance also means giving supports and accommodations to autistic people of all abilities and support levels when it’s asked for and needed. If the world becomes more embracing of the autistic lifestyle, I believe the severity of the mental health problems autistic people have can, in many cases, be lessened.
Source: Mental Health and Autism: Why Acceptance Matters
And this is at the core of the problem of masking. The perpetual acting, the perpetual stress levels on a par with what most folk would feel when at a job interview, the huge physical effort of sitting still and coping with sensory overload, and the conscious process of trying to work out how to interact with other human beings eventually takes its toll. In the short term it can lead to a meltdown (as it did with me in the supermarket the other day). In the long term it can destroy mental health and lead to autistic burnout.
Many autistics mask for years, putting in huge amounts of work to try to fit in to the world. Those of us who were diagnosed very late avoided some of the therapies that essentially force autistics to mask by using punishment when they exhibit autistic behaviours, although we were often taught to “behave properly” and the cane in the corner of the headmaster’s study was a constant threat throughout our childhoods. Some autistics become so good at masking that when they present for diagnosis they are turned away or misdiagnosed and when they tell people they are autistic they are met with disbelief and invalidation.
Wasting Energy – Finally Knowing Me: An Autistic Life
I’m really autistic now. But thanks to a lifetime of being told that I must disguise the pain, at all costs, I learned to mask. To put on a false front, be the person that others wanted me to be. Smile when in pain. Be really nice when in pain. Cope when in pain. Not Be Me. Never, ever be me. Never. If I was the real me, I would experience hatred from others, more isolation, more loneliness, more condemnation, more false accusation (because of ignorance of autistic culture and communication).
And, do you know what happened? It broke me.
There is a myth that if we disguise being autistic, it’ll all go away. The future will be lovely. All will be well. A myth that autism was some sort of behavioural choice by us to annoy people around us. Rhubarb, to use an apt word.
So…
I’m OK being autistic.
Ann’s Autism Blog: What do I mean by “We’re OK being Autistic” ? #TakeTheMaskOff
The primary characteristics of autistic burnout were chronic exhaustion, loss of skills, and reduced tolerance to stimulus. Participants described burnout as happening because of life stressors that added to the cumulative load they experienced, and barriers to support that created an inability to obtain relief from the load. These pressures caused expectations to outweigh abilities resulting in autistic burnout. From this we created a definition:
Autistic burnout is a syndrome conceptualized as resulting from chronic life stress and a mismatch of expectations and abilities without adequate supports. It is characterized by pervasive, long-term (typically 3+ months) exhaustion, loss of function, and reduced tolerance to stimulus.
“Having All of Your Internal Resources Exhausted Beyond Measure and Being Left with No Clean-Up Crew”: Defining Autistic Burnout | Autism in Adulthood
Now at 32, I have been a variety of people, and I don’t always know who the real me is. My mask has fused itself to me, leaving me inhibited and confused, uncertain of how to break loose, left wondering if being authentic is even possible anymore.
What Hiding My Autism Costs Me – Devon Price – Medium
I have no choice but to don the mask. I wear it reflexively every day. Here is what that costs me.
They tell us from the time we're young To hide the things that we don't like about ourselves Inside ourselves I know I'm not the only one Who spent so long attempting to be someone else Well, I'm over it Secrets by Mary Lambert
Very Grand Emotions
Justice, equality, fairness, mercy, longsuffering, Work, Passion, knowledge, and above all else, Truth. Those are my primary emotions.
Very Grand Emotions: How Autistics and Neurotypicals Experience Emotions Differently » NeuroClastic
This is the clincher. You have to live up to autistic standards of honesty if you are to convince us to follow a different path or to change our minds.
Autistic Black & White Thinking… Autism & Relationships * Morality & Justice * – YouTube
If you aren’t willing to make sure that what you ask of us or want us to believe is reasonable, fair and true, then you won’t have our respect and the relationship is doomed.
The influences that distort the morality of those around us simply don’t penetrate our conscious minds.
Society feels thoughtlessly and consistently sub-ethical and uncurious compared to our very grand emotions, which contributes to burn out.
“Being autistic has always given me a strong sense of justice and fairness, and a burning drive to do the right thing and to fight for it, even when it seems like struggling against the weight of the world. This seems very related to my extreme empathy, which is also tied to my experience of being autistic.”
7 activists tell us the best thing about living with autism
“Knowing that injustice or violence exist anywhere is deeply painful for me, whether it directly targets me or not, and I believe that I must do anything within my capacity to work for a world where none of us have to be afraid anymore. If I were not autistic, I am certain I would not have the same drive as I do now.”
This is a hyper empathic autistic’s heart under the stress of injustice. My resting heart rate rises for days and weeks at a time, contributing to meltdown and autistic burnout. I started trending higher the day I knew I had to confront injustice and start writing and organizing against it. This is constant adrenaline poisoning that goes for long periods. I feel it all through me from the moment I wake to the moment I finally pass out from exhaustion and into my stress dreams while sleeping. It’s a hell.
I know I've ruined a night or two I couldn't hold back my views Family dinner turned off the news Stuck in a silent room And I'd rather die by the truth And hide away feeling shades of blue I've ruined a night or two 'Cause it's hard being hardcore I'll cut the lights and cry in the dark more If you don't feel, then what the hell is a heart for? 'Cause it's hard being hardcore
Everybody's got the same blank face Tough roughing up the place When you're not putting up a front Now you're the crazy one Leather jackets line up at the bar Good at hiding who they are Everybody's got the same blank face So I'd rather die by the truth And hide away feeling shades of blue You want tears, I've shed a few 'Cause it's hard being hardcore I'll cut the lights and cry in the dark more If you don't feel, then what the hell is a heart for? 'Cause it's hard being hardcore Hardcore by Allison Ponthier
Meerkat Mode
Lovingly dubbed “meerkat mode” by Tanya due to the heightened state of vigilance and arousal it presents, it involves constantly looking for danger and threat. It is more than hyper-arousal, Tanya believes that it is actually an overwhelmed monotropic person desperately looking for a hook into a monotropic flow-state.
This is not just sensory hyper-arousal, it is the tendency of monotropic [AuDHD] minds to seek out a natural and consuming flow-state to aid recovery from burnout and/or monotropic split. Because of the heightened sensory-arousal and adrenal response that comes with it, monotropic flow becomes difficult to access, leading into monotropic spiral.”
Adkin & Gray-Hammond (2023)
What is meerkat mode?
What is meerkat mode and how does it relate to AuDHD? – Emergent Divergence
- Hypervigilance
- Seeking a monotropic flow-state (Hyperfocus)
- Increased Sensory Dysregulation
- May be unable to stop or rest
What atypical burnout can look like is being stuck in a hyper-aroused state, Tanya often affectionately dubs this as “meerkat-mode”, she describes a meerkat-type nervousness, constantly on the look out for danger, unable to focus and self-regulate creating the need for constant co-regulation with another person, and a fear of being left alone. This is sometimes misinterpreted as attachment disorder because of the childs perceived over-attachment to a parent or safe person. We often see this type of response from children and young people in traumatic school environments for extended periods of time.
Creating Autistic Suffering: What is Atypical Burnout? – Emergent Divergence
Lovingly dubbed “meerkat mode” by Tanya due to the heightened state of vigilance and arousal it presents, it involves constantly looking for danger and threat. It is more than hyper-arousal, Tanya believes that it is actually an overwhelmed monotropic person desperately looking for a hook into a monotropic flow-state.This is not just sensory hyper-arousal, it is the tendency of monotropic minds to seek out a natural and consuming flow-state to aid recovery from burnout and/or monotropic split. Because of the heightened sensory-arousal and adrenal response that comes with it, monotropic flow becomes difficult to access, leading into monotropic spiral.
Creating Autistic Suffering: The AuDHD Burnout to Psychosis Cycle- A deeper look – Emergent Divergence
Monotropic Spiral
Creating Autistic Suffering: The AuDHD Burnout to Psychosis Cycle- A deeper look – Emergent Divergence
Monotropic Split
Monotropic split refers to a very specific type of attentional trauma experienced by monotropic people who are regularly exceeding their attentional resources (Adkin, 2022) in an effort to meet the demands of living in a world designed for non-monotropic (polytropic) people. It inevitably leads to burnout.
Creating Autistic Suffering: The AuDHD Burnout to Psychosis Cycle- A deeper look – Emergent Divergence
So, what happens when a monotropic mind is forced to live in a polytropic way?
A monotropic individual focuses more detailed attention over fewer attention streams than a polytropic (non-Autistic) individual. When they are forced into environments where they must perform like a polytropic person, the amount of attention to detail they apply to multiple attention streams doesn’t decrease, all that happens is the monotropic mind experiences trauma by being pushed into trying to give more attention than any individual can cognitively give.
I call this monotropic split. The monotropic mind is having to split its attention and give more mental energy and attention than it has available to be able to withstand the environment it is in and remain safe.
When we think of an Autistic person experiencing overwhelm, we are thinking of a monotropic mind taking on more than it can process and creating meltdown or shutdown. Therefore, experiencing monotropic split is the cause of meltdown or shutdown.
When we think of an Autistic person who masks, “copes” and “gets by” which eventually leads to burnout or mental health crisis, we are again thinking of a monotropic mind being forced to perform in a way that traumatises its processing capabilities. This is monotropic split causing trauma, burnout, or mental health crisis.
Guest Post: What is monotropic split? – Emergent Divergence
Autistic burnout starts with monotropic split (Adkin, 2022) over a sustained period of time. Burnout recovery can take months or even years, and the recommended course of action is usually to remove as many demands as possible, and recharge through interest-led activities.
Creating Autistic Suffering: What is Atypical Burnout? – Emergent Divergence
Double Empathy Problem
Empathy is a two-way street. Part of the stress of burnout is a lack of empathy and understanding from neurotypical society. There is a mutual incomprehension that occurs between people of different dispositional outlooks and personal conceptual understandings.
The ‘double empathy problem’ refers to the mutual incomprehension that occurs between people of different dispositional outlooks and personal conceptual understandings when attempts are made to communicate meaning.
FROM FINDING A VOICE TO BEING UNDERSTOOD: EXPLORING THE DOUBLE EMPATHY PROBLEM
I don't want to know I don't want to know what they're saying about me I don't want to know I don't want to show that it devastates me I'm living somewhere nobody goes to I'm speaking in a language nobody talks The window broken, a cold wind blows through My soul a series of electrical shocks Trans Mantra by Ezra Furman
Activist Burnout
Autistic self-advocates face activist burnout in addition to autistic burnout.
One of the major themes we see is that the impact of activist burnout compounds existing industry and workplace pressures faced by marginalized tech workers. Activism burnout is usually happening while advocates are also facing demanding schedules, hostile work environments, and a tech culture where abuse, discrimination, microaggressions, and psychological effects like imposter syndrome and stereotype threat are widespread. This echoes what Keidra Chaney wrote in Invisible: Burnout and Tech: “For marginalized workers in tech – women, people of color, queer/trans people, people with disabilities – [tech] burnout comes quicker and harder. It comes from existing and being pressured to thrive in a space where your presence is seen as an aberration, and your skills are perceived as suspect. It’s a burnout not easily solved by quick fixes, or even a new job; it’s triggered by your own life, the very body you inhabit” [Model View Culture, 2015 Quarterly #3.] The realities of a marginalized existence in tech, layered with activist burnout are profound; as one respondent noted: “It’s alienating and exhausting during the workday and after the workday;” another acknowledged that, despite the rewards of the work, “it gets tiring to have people only see me as an activist and not as a deeply technical person who is also an activist… it makes me question whether I’m really as deeply technical as I think I am. It gives my impostor syndrome yet another thing to play with.”
Source: Putting a Spotlight on Diversity in Tech Burnout by The Editor | Model View Culture
Meltdowns, Shutdowns, and Alexithymia
But I’m tortured because whilst I don’t want to make a scene or have strangers adding to the overload and overwhelm, I’m simultaneously desperate for someone to give me a massive, firm, bear-hug. To hide me, cocoon me, and shield me from the shock waves that travel from their universe into mine.
On meltdowns
Related to burnout are meltdowns, shutdowns, and alexithymia.
We cannot simply exclude autistic pupils for entering meltdowns. Meltdowns are part of autism for a good number of autistic young people.
Whilst mindful that of course everyone needs to be safe, the way to achieve safety is to stop hurting the autistic children. Punishing them for responding to pain is not something any of us need to do.
Ann’s Autism Blog: Autism, School, Exclusion. What’s fair?
Meltdowns are not a “symptom of autism.” Meltdowns aren’t an inevitable part of being autistic. Meltdowns are what happen when autistic people are forced to endure extremely stressful situations.
One of the more encouraging developments in the autism field over the last decade or so has been a growing awareness of the significance of sensory issues. Sensory sensitivities are included in the DSM-5 as part part of the diagnostic criteria for autism, and in teacher training materials, such as those provided by the AET. They are also highlighted in campaigns by the National Autistic Society (NAS), for example. But despite these signs of increased understanding, I’m not convinced that in our schools there is a sufficiently nuanced appreciation of this multi-faceted phenomenon, which potentially influences a whole range of physical and perceptual processes (Bogdashina 2016). Indeed, the school environment can present autistic children with a multi-sensory onslaught in terms of sounds, smells, textures and visual impacts that constitutes both a distraction and a source of discomfort (Ashburner, Ziviani and Rodger 2008; Caldwell 2008). There was also clear evidence from my own study that sensory issues, and noise in particular, can be highly exclusionary factors for autistic children in schools.
Inclusive Education for Autistic Children: Helping Children and Young People to Learn and Flourish in the Classroom
Everyone looks very strange today All of their faces seem to be washed away Everyone's talking, I can't hear a thing I'm on the moon, why is the sky so green I think I'm walking up the stairs While I'm sitting right down in my chair I feel so light, but I'm not Everything is gonna go when it's hot Or am I Freakin out, freakin out, freakin out Freakin out, freakin out, freakin out Freakin out, freakin out, freakin out Freakin out, freakin out, freakin out Or are you freakin out Freakin' Out by Death
Stop freakin’ us out.
Stimpunks: Real Help Against the Onslaught
Burnt out? Can’t work? Maybe Stimpunks Foundation can relieve some stress. We exist for the direct support and mutual aid of neurodivergent and disabled people. We serve our loved people so we can keep on living through the onslaught.
It's funny how time is never enough But my only crime Was pretending I'm tough I always wanted to be something Maybe I missed the mark Maybe I should have stayed at home Singing Broadway in the dark
I used to feel fine Living in this shell But it's breaking down And I'm not feeling so well I would go to the roller rink But I'm not into crowds I'm constantly on the brink Am I thinking too loud?
Come and get me I'm feeling lonely too Come and take me I'm coming with you
It's funny how time Is hands on a clock We will them to turn We beg them to stop I always wanted to free something But my mouth's rusted shut I always wanted to bleed something But my blood turned to dust
Come and get me I'm feeling lonely too Go on and and take me I'm coming with you
It's funny how time Is standing so still I pray to divine To do as she will I always wanted to see something But I thrive in the dark Will I step out into the sun? Or will I fall apart?
Come and get me I'm feeling lonely too Go on and and take me I'm going with you I'm feeling lonely too Go on and and take me I'm going with you I'm feeling lonely too I'm feeling lonely too
King Arthur’s Seat by Slothrust
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