I called it autistic burnout, a term I learned not from professionals but from my fellow autistics trying to illuminate the gaps in the autistic experience that the so-called experts on us were either missing or ignoring. It describes a fairly common phenomenon that autistic adults were noticing in their lives. When faced with periods of major change, we can see a sizeable shift in our autistic traits. Causes of autistic burnout can include forcing yourself to pass as neurotypical, major stress or upheaval, sensory or emotional overload and illness. Symptoms can include a decrease in motivation, loss of executive function, selective mutism, problems maintaining social skills, memory loss, lethargy and decreased tolerance for sensory or emotional sensitivity. Basically, we hit a point where we can no longer manage our issues or keep up appearances in the same way that we have been and we end up feeling and/or looking “more autistic” as a result.
I’d been lurking on the periphery of autistic burnout for years, shaking off mild periods of confusion and exhaustion like a fighter moderately rocked by a strike. In the spring of 2015, I got knocked the fuck out. In my case, I think it was just a culmination of my entire life up until that point. Digging out from the catastrophic meltdown that had forced my diagnosis was very much a two steps forward, one and five-sixths steps back scenario. I was making progress, but I was tired. At least subconsciously, I was starting to realize that some of the coping mechanisms I was currently employing might not be long-term solutions.
Source: I Overcame My Autism and All I Got Was This Lousy Anxiety Disorder (p. 165-166)
“Knocked the fuck out” by autistic burnout. Been there. Still recovering.
Autistic Burnout: The Cost of Masking and Passing – Ryan Boren
If you really care about diversity, don’t let unpaid, unrewarded labor be piled on marginalized people – your people.
Source: Whose job is it to D&I anyway?
Don’t make underrepresented people work a second job as diversity champions. – Natasha Litt, Data Engineer at New Relic
Source: Is Your Employee Resource Group Helping Or Hurting? | Ellevate
Underrepresented employees already have to overcome discriminatory barriers in their careers; they shouldn’t be expected to volunteer their time to help their companies do the same.
Source: Exclusive: How to Break Up the Silicon Valley Boys’ Club | Vanity Fair
The vast majority of this activism is being led by underrepresented people – some working at tech companies, some starting their own, and many working outside of traditional structures as independent activists or as part of new collectives. In addition to managing the daily toll of existing as a marginalized person in technology, they are also taking on the challenging, taxing and often thankless work of culture change… and it doesn’t come without a cost. Diversity in tech work is having a profound, negative impact on advocates’ happiness, mental and physical health and work/life balance, as well as their safety, relationships, careers and security.
Activist burnout is something more widely documented in other social justice communities, yet less understood and discussed in tech itself. In fact, it remains a highly taboo topic: in our recent informal survey on tech activism and burnout, we found that the vast majority of respondents chose to remain anonymous. Still, their responses made one thing absolutely clear: burnout is one of the #1 challenges facing the movement.
Source: Putting a Spotlight on Diversity in Tech Burnout by The Editor | Model View Culture
I updated “Autistic Burnout: The Cost of Masking and Passing” with selections from “Ann’s Autism Blog: What do I mean by “We’re OK being Autistic” ? #TakeTheMaskOff”.
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.
I’m OK being autistic.
Source: Ann’s Autism Blog: What do I mean by “We’re OK being Autistic” ? #TakeTheMaskOff
I updated “Autistic Burnout: The Cost of Masking and Passing” with selections from “Wasting Energy – Finally Knowing Me: An Autistic Life”.
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