I updated “Autistic Burnout: The Cost of Masking and Passing” with selections from “THINKING PERSON’S GUIDE TO AUTISM: Autistic Burnout: An Interview With Researcher Dora Raymaker”, “What Hiding My Autism Costs Me – Devon Price”, ‘“Having All of Your Internal Resources Exhausted Beyond Measure and Being Left with No Clean-Up Crew”: Defining Autistic Burnout | Autism in Adulthood’, and “Taking ownership of the label – Autistic Collaboration”.

“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

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.

Source: “Having All of Your Internal Resources Exhausted Beyond Measure and Being Left with No Clean-Up Crew”: Defining Autistic Burnout | Autism in Adulthood

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

I updated “Autistic Burnout: The Cost of Masking and Passing” with a selection from “Autistic Burnout: “My Physical Body And Mind Started Shutting Down””.

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”

This study on autistic burnout from the Academic Autism Spectrum Partnership in Research and Education at Portland State University notes this distinction between autistic burnout and depression. Autistic burnout…

Notably did not include anhedonia (not caring/feeling); if anything there was a pervasive frustration because people continued to care and feel but felt incapable of taking action on their feelings

Source: Autistic Burnout: “My Physical Body And Mind Started Shutting Down”

That aligns with my experience. Pervasive frustration indeed.

What is autistic burnout?

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.

CW: suicide

Results confirm previously reported high rates of suicidality in ASC, and demonstrate that ASC diagnosis, and self-reported autistic traits in the general population are independent risk markers for suicidality. This suggests there are unique factors associated with autism and autistic traits that increase risk of suicidality. Camouflaging and unmet support needs appear to be risk markers for suicidality unique to ASC. Non-suicidal self-injury, employment, and mental health problems appear to be risk markers shared with the general population that are significantly more prevalent in the autistic community. Implications for understanding and prevention of suicide in ASC are discussed.

Source: Risk markers for suicidality in autistic adults | Molecular Autism | Full Text

See also:

Autistic Burnout: The Cost of Masking and Passing

A passage on passing, masking, and burnout from a great #ActuallyAutistic #OwnVoices book, “On The Edge of Gone”.

The thought hits me out of nowhere. I gasp for breath, tears suddenly right there, pressing behind my eyes, and I no longer know what I’m doing here. I don’t know why I ever thought I could be here. I’m not the kind of person who can sit at her tab all day and smile and work and chitchat. I’m not Dr. Meijer. I’m not Els’s colleagues at the university.

Sometimes I think I could be, and that I have a hard time because I’m lazy, and that the way I’m suddenly staring at the plant in the corner for twenty minutes straight and seeing how many leaves are on a twig and how many twigs are on a branch and if any branches break the pattern – that that’s me looking for excuses. I’ll think that the only difference between me and the rest of the world is that I have no goddamn discipline, and that all of this is in my head, and if I tried, I could fit in and be the productive little cog I ache to be.

I’m not like those kids at the shelter, the ones playing. Not really; not anymore. Maybe I’m not different at all, my autism is just bullshit, and all I am is a failure. I should do more than I am. I should be more than I am.

But if what my head feels like now truly is what other people feel all the time— if everybody I see on the street or on TV really manages this day in, day out –

They can’t be.

The world can’t be that hard.

Source: On The Edge of Gone

Via: GUEST POST – Amy Pond, mental health and me | DoWntime

This is a book about an autistic girl, written by an autistic woman. This is the first book I’ve ever read in my entire life that is about someone like me, someone I really, deeply related to. It’s the first book I’ve ever read with an autistic protagonist that isn’t about autism. It’s about the end of the world, and it just happens to be told through an autistic person experiencing that. And it’s authentic, because this wasn’t written by someone who has studied autism, or who has a child with autism, but by someone who has autism. And this is the first book I’ve ever read that’s like that. I’m sure there are more books like it, but not many. Oh, there’s a wealth of books about autism, often written by parents of autistic children, often incredibly harmful books. Books that treat autism as a disease, that treat autistic people as something other, something not quite human. They treat us as if we don’t have a voice.

Do you know how tiring that is?

On The Edge of Gone made me cry, not because it was a sad book, but because I felt a little bit less alone. I felt seen. I felt like someone understood. A neurotypical person might read On The Edge of Gone and not understand. Or rather, they won’t feel it, not the way autistic people do. Or some autistic people, anyway. We come in many shapes and colours, after all. Not everyone experiences this. But I think that for a lot of us, it will resonate. I know that it did for me. And even if you haven’t experienced what the protagonist of Corinne Duyvis’s novel has, that doesn’t mean you can’t empathise with her. You might not be able to feel what she feels, but you can feel for her. Even if she isn’t ‘normal’.

Source: GUEST POST – Amy Pond, mental health and me | DoWntime

“Because Kara’s self-injury is a behavioral issue as opposed to neurological, it’s THC, not CBD, that stabilizes her mood.”

Source: Texas Rep. Pete Sessions’ War on Medical Marijuana

I get the distinction they’re trying to draw, but I cringe at seeing autistic needs framed as and reduced to a “behavioral issue”. Stop interpreting our needs as “behavior”. Behaviorism is bad framing. The behavioral vs. neurological and THC vs. CBD binaries in that sentence are too…binary.

Cannabis helps some of us endure overwhelming environments and the consequences of compliance, behaviorism, and burnout.

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.

So…

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