Tag: autistic burnout

Social Compensation and the Costs of Masking and Passing

On social compensation and the costs of masking and passing:

Even for people with a diagnosis, a neurotypical appearance due to compensation might result in support needs being underestimated in educational and workplace settings. Additionally, compensation is thought to contribute to poor mental health in autism. Compensatory attempts are taxing, need to be sustained over time, and are often unsuccessful, resulting in a cost to wellbeing.

Despite potential negative consequences, compensation was still considered to be important for increasing life opportunities, and thereby having a role in society (subtheme). Compensation enabled individuals to perform daily tasks that involved communicating with others (eg, accessing services) and to seek employment. Some participants, however, stressed that although compensatory strategies facilitated gaining employment (eg, in interviews), they were not always sufficient to maintain employment and switching jobs was often necessary. Additionally, cognitive demands of using compensatory strategies throughout the working day were reported to affect participants’ ability to perform daily living tasks, so they incurred personal costs while pursuing a role in society.

Source: Compensatory strategies below the behavioral surface in autism: a qualitative study – The Lancet Psychiatry

The paper identifies 8 themes and 18 subthemes for why we engage in social compensation. I particularly relate to the “Costs vs benefits”, “Deep compensation”, “Cognitive tasking”, “Environmental demands”, “Behavioural masking”, “Interaction is two-way”, “Late diagnosis”, and “On ongoing challenge” subthemes. I’m curious if the folks in the “Things are better now” subtheme remain there later in life or if they finally experience burnout.

The paper uses the term “social compensation” instead of the autistic community colloquial term “masking”. It identifies “behavioral masking” as a theme of “social compensation”. Here’s the distinction:

Compensation was distinguishable from behavioural masking (theme). Whereas compensation generated new social behaviours, masking regulated existing behaviours, such as decreasing social behaviours thought by society to be undesirable (eg, talking too much) and increasing behaviours thought to be desirable (eg, smiling). Masking strategies were simple and often automatic, and allowed blending into the background, but were less effective in supporting social interaction. Masking was considered less autism-specific than compensation, given that neurotypical people show masking when required (eg, hiding controversial opinions).

To modulate compensatory efforts, many participants described compensating after logically assessing the costs versus benefits (subtheme). For example, compensation was considered worthwhile to make a positive impression towards a friendship, but not for interactions with inconsequential strangers. In superficial interactions, masking was preferred over compensatory strategies to conserve resources.

Thanks @HappeLab and team for doing this needed work.

Via:

See also: Autistic Burnout: The Cost of Masking and Passing

A Working Definition of Autistic Burnout

Here’s a working definition of autistic burnout from an autism researcher studying burnout and suicidal behavior:

“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

AASPIRE is currently running a pilot study on autistic burnout and suicidal behavior. Autistic people have often talked about burnout, and it emerged as a major theme in their previous study on autism and skilled employment, but up to now, it has received limited attention from researchers.

So glad AASPIRE is heeding autistic communities and doing this much needed research.

The piece links to a couple resources on avoiding and recovering from burnout:

Via:

Ways to Be an Ally During Autism Acceptance Month

”It’s a sad indictment on our society that Autism Awareness Month (April) is the month that Autistic People feel they have no other option but to hide, just to make it through.”

Autism Acceptance/Awareness Month is a hard time for autistic people. Myths and misinformation are amplified over our voices. We are drowned out and harassed.

How can you help? Here are some ways.

Contents:

  • Avoid amplifying these myths.
  • Learn about us from us.
  • Learn about autistic burnout.
  • Don’t amplify inspiration porn.
  • Don’t support behaviorism.
  • Use and promote identify-first language.
  • Connect autistic kids with autistic adults.
  • Change your framing.
  • Know that we are dying young.

Avoid amplifying these myths.

“Navigating Autism Acceptance Month and Autism Myths” covers the common myths and misconceptions. Please don’t amplify these. Seeing them dominate and drown us out on social media makes for a depressing month.

Learn about us from us.

Nothing about us, without us. That’s a golden rule for inclusion and pluralism. Learn about us directly from us, not just from parents, educators, and healthcare workers, many of who have a 1940s era conception of autism.

Here’s what our autistic, ADHD, dyslexic, dyspraxic family wants you to know about us. This collects the voices and thinking of the #ActuallyAutistic self-advocacy movement:

I’m Autistic. Here’s what I’d like you to know.

Here are some hashtags where autistic people will be sharing and educating during Acceptance Month. Learn and amplify.

Learn about autistic burnout.

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

My piece on autistic burnout is the one I get the most feedback on from other autistic people, including autistic students and teachers. If you learn one thing about autism for your autistic family member, student, patient, or co-worker, let it be burnout.

Don’t amplify inspiration porn.

Inspiration porn is called porn because it objectifies disabled and neurodivergent people. Our family has had to navigate well-intended inspiration porn. Here’s what it is and how to avoid it:

Inspiration Porn, Mindset Marketing, and Deficit Ideology

We are all too aware of the risk of being filmed for someone’s feel-good story (or for someone to mock, but that could be another post). We already face enormous pressure to not ask for help – to be the “supercrip” and “overcome” our disabilities – and the risk of being a viral story is yet another reason we might avoid asking for help when we need it.

Source: How the Media and Society Objectify Disabled People | Paginated Thoughts

Don’t support behaviorism.

Autistic people don’t support Autism Speaks for many reasons, but one of the foremost is their support for Applied Behavior Analysis. The #ActuallyAutistic community is very much against ABA, PBS, and behaviorism is general. ABA is autistic conversion therapy. It shares history and bad actors with gay conversion therapy, a widely and rightfully condemned practice.

“We KNOW conversion therapy has seriously dangerous mental health implications for those that have had to experience it. Experts caution those who attempt to change someone’s sexual orientation. So WHY are we allowing people to attempt to change someone’s orientated thinking?”

The spread of ABA, PBS, and behaviorist ed-tech into education is of great concern. We watch the autism industry expand through public education with alarm and despair. Drop the B from PBS. Many autistic self-advocates consider such behaviorism an existential threat, myself included. Help us push back against behaviorist ed-tech at your school.

Asperger even anticipated in the 1970s that autistic adults who “valued their freedom” would object to behaviorist training, and that has turned out to be true.

Source: THINKING PERSON’S GUIDE TO AUTISM: On Hans Asperger, the Nazis, and Autism: A Conversation Across Neurologies

Use and promote identify-first language.

Disabled, Deaf, Blind, autistic. Just say the word. The majority of those in these communities prefer identity-first language, not person-first language. Promote identity-first language, and respect language choice, be it PFL, IFL, or otherwise.

When you excise a core defining feature of a person’s identity from their living, breathing self, you sort of objectify them a bit. And you make that core defining feature optional. Because it can be safely removed, and they’re still a person. Right? Well, a person, yes – but not the sort of person they know themselves to be. And not the sort of person you can truly get to know. Because you’ve denied one of the main characteristics of their nature, out of an intention to be … compassionate? Dunno. Or maybe sensitive?

Whatever the original intention, the effect is just a bit dehumanizing. And a lot of us don’t like it.

So, if you’re into PFL – person-first language – please reconsider before you use it regarding autism. Cancer is one thing. Plaque psoriasis is another. Autism… well, that’s in a league all its own. And I wouldn’t leave that domain for all the money (or well-intended compassion) in the world.

Source: The cognitive dissonance of “person-first” references to #autistic people – Happy, Healthy Autist

Connect autistic kids with autistic adults.

Autistic is a community, a culture, and an identity. Connect autistic kids with autistic adults. We can help them. We know what it’s like.

“Disability’s no longer just a diagnosis; it’s a community.“

“Autistic kids need access to autistic communities. They need access to autistic mentors. They need to know that the problems they go through are actually common for many of us! They need to know they are not alone. They need to know that they matter and people care about them. They need to see autistic adults out in the world being accommodated and understood and respected. They need to learn how to understand their own alexithymia and their own emotions. They need to be able to recognize themselves in others. They need to be able to breathe.”

“That study identified, unsurprisingly, that it’s parents & professionals are ones fighting to hang onto ‘special’ but here’s the thing I honestly don’t get – you are depriving the kid of their membership in a big, welcoming, fantastic, supportive community by doing so. Why?”

Change your framing.

Autism cannot be understood without the social model. Reframe.

A Change of Frame: From Deficit Ideology to Structural Ideology

Autism is a genetically-based human neurological variant that can not be understood without the social model of disability.

Source: A communal definition of autism | Autistic Collaboration

Know that we are dying young.

CW: mentions of abuse, PTSD, therapy, behaviorism, suicide

Feel our urgency. We are dying young. We’re dying of PTSD induced by forced neurotypicalization. Behaviorism contributes to burnout, high suicide rates, and short lifespans for autistic people. We need allies and amplification, not more behaviorism and inspiration porn.

”I’m autistic. I just turned 36 — the average age when people like me die.”

“The abuse of autistic children is so expected, so normalised, so glorified that many symptoms of trauma and ptsd are starting to be seen as autistic traits.“

“#ActuallyAutistic people would do ANYTHING to stop young children going through some of the things they have. The pain. The trauma. The distress. The lack of compassion. The lack of understanding. Listen to us when we tell you the pain ABA therapy causes.”

“Pretty much everything an autistic child does, says, doesn’t do or doesn’t say is pathologised and made into a way to invent a ‘therapy’ for it. It’s actually hell to experience. We should stop doing this and start learning about autism. Thank you for listening.”

“When I was a little girl, I was autistic. And when you’re autistic, it’s not abuse. It’s therapy.”