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.
Source: Autistic Burnout: “My Physical Body And Mind Started Shutting Down”
“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.
Source: THINKING PERSON’S GUIDE TO AUTISM: Autistic Burnout: An Interview With Researcher Dora Raymaker
Update: Expanded Version Available
An expanded version of this piece with more quotes, images, and videos is available at Stimpunks Foundation, a non-profit by and for neurodivergent and disabled people.
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.
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.
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.
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.
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.
Source: 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…
Source: 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.
Source: ‘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.
Source: 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.
So, we pull inward more and more… and more and more… try to reach out more and more … more and more… and while the rest of the world is overlooking ignoring our pain and stress (because we’re so social), inside, we feel like we’re dying. Suffering, struggling… unable to escape that vicious cycle.
Source: 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.
Source: 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.
Then, autistic burnout began to rear up again. I thought I knew just how to navigate the burnout. At least I knew to slow down, pull back from social engagements and increase sensory regulation time and modalities. In the past these things had been helpful and allowed me to get back in sync after a few months, thus being able to venture back out into the life I wanted. Not this time.
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
I think one thing that may be different about a person on the spectrum going through burnout, is they may have learned a social facade that can be carried into periods when they are horribly stressed.
Observing others through my career, most are not able to disguise this kind of distress, and they often do not receive the same demands that the hardworking dedicated worker with hidden distress receives.
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.
Source: 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
Throughout my school years, I was taught to camouflage my symptoms in order to blend in and function in the mainstream environment. This was reinforced through behavioral therapy and the school system. A few examples that I can remember include that I was pressured to join clubs, and also sit with a group of kids because that is how typical high schoolers socialized. I was discouraged from socializing with adults such as the other aides at school, or the computer teacher in middle school, because it wasn’t considered appropriate. I was socialized to learn about the fashion and other interests that teens through social groups that my behaviorist made (e.g. the “cool” or “not cool” chart) in an attempt were to make me “fit in” better.
All these experiences and others have taught me that I should camouflage and suppress my natural self because I should appear normal. Friends were chosen for me, because people wanted me to be more social. I went along with the recommendations of my support people and parents, and pretended to live as a neurotypical, because I thought they knew best. I tried all I could to suppress my natural way of being—at the expense of my self esteem, and acceptance of my unique neurology.
What the people who helped me didn’t realize at the time were the future implications of my mental health as an autistic person. This was because their focus was on making me as self-sufficient and socially adjusted as possible, and by the time I reached adulthood nobody ever considered that what they were doing could unintentionally affect my self-identity and self esteem. But all my energy spent camouflaging myself in order to appear “normal” became mentally exhausting. I started second-guessing myself, and internally beating myself up, over minor social infractions. This is a big part of my anxiety in living as an autistic person.
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
Masking is exhausting. Utterly utterly draining. I’ve had people say to me many times over the years “But WHY are you so tired? What have you been doing?” and I’ve been unable to work it out. Even in my 20s I used to collapse with exhaustion on a regular basis. The brutal truth is that for an autistic person simply EXISTING in the world is knackering – never mind trying to hold down a job or have any sort of social life. And many of the standard recommendations for “improving mental health” (such as seeing more people in real life, spending less time on the internet, sitting still and being “calm”) simply make matters worse – solitude, rest, and stimming are much more useful tools. We need a LOT of downtime in order to recover from what, for most folk, are the ordinary things of life.
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.
Source: 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.
I look around at my fantastic autistic family, friends, colleagues. The ones who have done the best masking, the best disguising? Broken. Or sitting amongst a trail of debris from broken relationships, broken job situations, broken health. I look at the research showing the suicide rates, the average age of death (54). Not from some genetic malfunction. From relentless pressure, relentless humiliation and pain. Anyone would die early from that. We need less focus on pleasing shareholders with news about ‘genetic cures’, and more listening to autistic people. More realising that actually we don’t need to be in that level of pain.
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.
It’s a myth. There is no perfect future from having to pretend we’re not ourselves. Only the extra hell of having to mask each day. Having to pretend that we are not autistic, and still endure the ridiculous expectations, sensory hell and social overload that non-autistic people place upon us.
So…
I’m OK being autistic.
Source: Ann’s Autism Blog: What do I mean by “We’re OK being Autistic” ? #TakeTheMaskOff
Now at 32, I have been 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.
I have no choice but to don the mask. I wear it reflexively every day. Here is what that costs me.
Source: What Hiding My Autism Costs Me – Devon Price – Medium
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. Autistic adults described negative impacts on their health, capacity for independent living, and quality of life, including suicidal behavior. They also discussed a lack of empathy from neurotypical people and described acceptance and social support, time off/reduced expectations, and doing things in an autistic way/unmasking as associated in their experiences with recovery from autistic burnout.
Autistic burnout appears to be a phenomenon distinct from occupational burnout or clinical depression. Better understanding autistic burnout could lead to ways to recognize, relieve, or prevent it, including highlighting the potential dangers of teaching autistic people to mask or camouflage their autistic traits, and including burnout education in suicide prevention programs. These findings highlight the need to reduce discrimination and stigma related to autism and disability.
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.
Participants described negative impacts on their lives, including health, capacity for independent living, and quality of life, including suicidal behavior. They also discussed a lack of empathy from neurotypical people. People had ideas for recovering from autistic burnout including acceptance and social support, time off/reduced expectations, and doing things in an autistic way/unmasking.
When autists attempt to blend in it is to avoid suffering the consequences of non-conformance – and not to gain or maintain social status.
Source: Taking ownership of the label – Autistic Collaboration
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.”
Of the ~30 respondents to our survey, mental health problems were one of the most heavily referenced effects of diversity in tech work, with numerous mentions of anxiety, depression and insomnia, as well as difficulty managing frustration and anger. In some cases, respondents reported that burnout triggered new mental illness symptoms; in other cases, it exacerbated, worsened or brought back pre-existing mental illnesses and related symptoms – as one activist noted: “I had been having mental health issues before already. Before my first burnout from tech activism, I was recovering from depression and eating disorders, and my recovery was going well. A short time into this burnout, my depression and eating disorders came back.”
Source: Putting a Spotlight on Diversity in Tech Burnout by The Editor | Model View Culture
Meltdowns, Shutdowns, and Alexithymia
Related to burnout are meltdowns, shutdowns, and alexithymia.
Selected Tweets
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.
Thank you for putting together so much information on this topic.
I was once told by a seven-year-old Aspie that his sensory issues still bothered him, he just wasn’t reacting to them as much as he had when he was younger. It brought to mind how much coping is involved in his navigating within a neurotypical world. As anyone who knows anyone on the HFA/Asperger’s end of the spectrum, things are fine until they aren’t.
And, of course, the ‘benefits’ are often nowhere *near* what the non-autistic majority thinks them to be.
Namely, they’re often limited to ***somewhat*** less harassment and bullying; while ‘inclusion’ into society is still a far-distant ‘dream’ for most of us – yes, even if you can somehow get a job.
I used to think ‘twice the effort for half the results’ was a joke.
It ***too*** is also a far-distant dream when one cannot ‘do social’ (gamesmanship) like the majority; and that situation being dependent upon NOT ‘triggering xenophobia’ in susceptible non-autistic individuals. Given that (I suspect) ***most*** non-autistic persons DO find us not-likeable (as per a recent study, which confirmed my suspicions that way) – then more or less the only way to ‘join up’ (to society) and partake of its blessings is to not merely ‘become Normal in full particulars’ / ‘complete brain-transplant’.
No. Not good enough.
One needs to become a non-homicidal and less-lawbreaking clone of Patrick Bateman.
Then – and *only* then – will society ***welcome*** the likes of ***us***.
Looking back, I must have melted down at my last accounting job at least 3 times. When I stopped focusing on being neurotypical, I realized how much I knew about my clients, but by then it was way too late. I’d already burned out from the laissez-faire neurotypical office structure and the political games that are played. I now hate accounting with a burning passion and hope never to return.
I was just reading this blog post and wanted to reply to your comment. I, too was an accountant for a short time because it completely destroyed my mental health, I haven’t met many other people who have had the same sort of experiences as me in accountancy and work (I’ve only just been diagnosed with autism), so this helped me feel less alone. 🙂
Yes. I’ve been a Paramedic for over 23 years. Patient care and dealing with patients I love. Others in that field and captains and managers, I really can no longer muster.
Reblogged this on yarn and pencil.
Reblogged this on International Badass Activists.
I think I am currently experiencing autistic burnout, as I am constantly exhausted, can’t seem to recover, and am functioning at a minimum acceptable level at work. Which means I’m doing what I have to but don’t take any initiatives. Sometimes I didn’t finish things I started but luckily enough noone asked about them anymore.
The problem is that I can’t afford to quit my job nor to go on sick leave for a long time, and going just for a week is not enough. Even 3 weeks of summer holidays actually aren’t enough. So I feel stuck. There’s no energy left for anything, everything I do feels like an obligation that I don’t want to do, even things I normally enjoy doing or are even special interests to me. My boyfriend is afraid I might break down. And I have no idea how to get out of this or how to hold on until I finish my current job in September 2019. Does anyone have any kind of tips or ideas what I could do?
This is like my life story! Thank you so much for writing it!
Great, great, great article and collection of texts, reading it was a constant “so THIS is why I’ve been floored for so long!” (I was diagnosed very late, been trying to act normal for close to 50 years, burnt out a few years ago). Thanks a lot! 🙂
This article, is the number one resource I have found for communicating to others about being Autistic.
Reblogged this on The Royal Circle of Autism and commented:
This is really important to understand and is absolutely where I have been for a while now…
very well put together info that pretty accurately reflects the reality by my experience
Thank you. This has helped me to understand and empathise with the struggles that my autistic daughter has to cope with.
this sentence does not make sense. please can you fix it? it’s impossible for me t move past this and finish reading because this is not grammatically or logically correct: “I was socialized to learn about the fashion and other interests that teens through social groups that my behaviorist made (e.g. the “cool” or “not cool” chart) in an attempt were to make me “fit in” better.” i want to understand. thank you.
i think i have permanently been burnned since i can remember ive been wearing the mask and no matter how hard i try i cant remove it, i cant even call a dr. to make an appointment, and i cant do very much of anything, i leaves me feeling like a burden, euthanasia should be a choice for me, i would gladly choose it, existing constantlty living in cotradiction torn in 2, is suffering 2 lives now add austism.
Thank you for this post. This is what I’m going through right now, and this blog has become my go-to in order to explain to people what it’s like.
My 32 year old son shared a link with me in an email and stated, “IDK how long, but for quite awhile”. After reading through Ryan’s blog, I understand. I know the pain, the struggle is all very real. HOW does it ever get better? Reading about others and what you all face day to day tells me that you too understand what my son lives through. But, who can help him? Why are “we” forced to fight society – where do we turn for help, why does this have to be near impossible? David simply wants to live his life and be left alone from all the bs that pushes him into meltdowns, burnouts and the like. How does he live on his own and raise his children? Decades ago, I struggled through anxiety, depression, eating disorder – I honestly don’t know how or when I “got better”. Must’ve been when I found a job that I could do well in and my kids were older and I felt less threatened with poverty.
How do you manage? Who intercepts and helps you on those days/weeks/months when you go to the store or a school function for your child or when you attend a social gathering because “everyone” expects you to, or when you are confronted by an authority or approached by a passerby and they don’t all know you are autistic because you have masked it all of your life? There are so many questions I have. And, for today, it seems we have only marked another day of survival off David’s calendar. When is there a day of life and enjoyment that we get to celebrate? Please tell me those can happen too.
Great blog post, it was helpful to have such a useful resource all in one place. Thank you so much for writing this.
Wish you’d allow this autistic person to print your article…too difficult to read on a little phone screen. Feel like I might be missing out in some valuable info. Maybe reconsider? If your worried about copying or unauthorized distribution…all someone would have to do is copy your text…so please?
All of my writing is licensed with the Creative Commons CC0 license. There’s a print button in the Share This: section below the article, but you might need to be logged into wp.com to see the sharing buttons.