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

The set of social, political, cultural, and personal rules favors a particular way of thinking, feeling, behaving, and communicating as superior to others: the neurotypical form.

Our parents are ashamed of our differences, and we notice it. They continually repress us when out of instinct we obey our neurology. They deny us reasonable adjustments because according to their own neurology, our differences are meaningless and no one has explained to them that it is a right.

The vast majority of medical interventions around autism are not accepting of autism as one of the many biological possibilities of human diversity. Without evidence, they pathologize our differences, dehumanizing us.

The authorities force us to submit to systems that do not take into account our differences, making access to our human rights difficult.

The neuronorm forces us to camouflage ourselves when it is possible (at a very high cost in health and dignity) and when it is not possible we are denied the presumption of competence and the most basic rights are taken away from us: dignity, freedom, education and even the right to live.

We are the rare ones, the strangers, those who do not share the codes that unite society. We are the epitome of what it means to be “the other,” our way of being considered “not valid.”

NEURONORM: The Neuronorm is the set of social, political, cultural and personal norms that privilege a particular way of thinking, feeling, behaving, and communicating as superior to others.

Source: The Guide is here! Understanding the Autistic Mind 1 » NeuroClastic

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”

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

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

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: THINKING PERSON’S GUIDE TO AUTISM: Mental Health and Autism: Why Acceptance Matters

I updated “Bring the backchannel forward. Written communication is the great social equalizer.” with selections from “Valuing differences: Neurodiversity in the classroom  – kappanonline.org” and “What CAN be misunderstood WILL be misunderstood | Autistic Collaboration”.

Sometimes it takes another person with your specific disability label, not another neurotypical teacher or peer, to help the world understand your experience. One of the first books I read about autism was Donna Williams’s memoir Nobody Nowhere: The Extraordinary Autobiography of an Autistic (Jessica Kingsley Publishers, 1998). One of her observations has always struck me as particularly apt: “Communication via objects was safe,” Williams says. For me, computers are objects that can be a bridge to interpersonal connection and growth. Those are things we all want, regardless of our differences.

Source: Valuing differences: Neurodiversity in the classroom  – kappanonline.org

I have developed a strong preference for written communication, which is a very effective strategy for avoiding the need for linguistic autistic masking.

Source: What CAN be misunderstood WILL be misunderstood | Autistic Collaboration

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