Autistic Burnout: The Cost of Coping and Passing

Being a “high-functioning” autistic or having high-functioning depression or anxiety means being doubted and having your identity questioned. Exhausting efforts to pass and mask are given little credit—sometimes tossed aside with an “I do that too”—and held against you in those moments of burnout when you can longer pass, mask, and cope. Ableist tropes regarding hidden disability are the reward for passing.

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

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

Autistic self-advocates also face activist 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

4 thoughts on “Autistic Burnout: The Cost of Coping and Passing

  1. 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.

    Liked by 2 people

  2. 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***.

    Like

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