Petition: Make schools, CAMHs and other professionals recognise and accept Autistic Burnout

I found this petition; (I'm not suggesting people sign it) am posting for discussion.

Make schools, CAMHs and other professionals recognise and accept Autistic Burnout

https://www.change.org/p/make-schoo...sionals-recognise-and-accept-autistic-burnout

 

Petition creator: Viv Dawes Autistic Advocate

National Autistic Society: Understanding autistic burnout:

"Autistic burnout is a syndrome conceptualised as resulting from chronic life stress and a mismatch of expectations and abilities without adequate supports. It is characterised by pervasive, long-term (typically 3+ months) exhaustion, loss of function, and reduced tolerance to stimulus.

Characteristics and impact

The research participants describe the experience of autistic burnout as chronic exhaustion, loss of skills, and reduced tolerance to stimulus. They described it as affecting every part of their lives and lasting for long periods of time. Many first experienced autistic burnout during puberty, graduation from secondary education, or at other times of transition and changes in developmental expectations.

Autistic burnout had many negative effects on their lives. Many highlighted difficulties with their health, especially their mental health. They talked about struggling with independent living, loss of self-belief, and being frightened that the loss of skills from the autistic burnout might be permanent. They also talked about a lack of empathy from neurotypical people, who had difficulty understanding or relating to the autistic person’s experiences. Some people related an increase in suicidal ideation and suicidal behaviour."

National Autistic Society: Autistic fatigue

"Exhaustion (fatigue) and then burnout can happen to anybody. Being autistic can make fatigue and burnout more likely, due to the pressures of social situations and sensory overload. If you are experiencing fatigue or burnout, managing your energy levels is essential, as this guide explains.

‘Autistic fatigue’ and ‘autistic burnout’ are terms that came from autistic people, and we are learning from the experiences of autistic adults.

Fatigue, and then subsequent burnout, can happen to anybody. Autistic people, however, can be more susceptible to both, due to the pressures of everyday life, having to navigate social situations and sensory overload."


Autistic Burnout: very long personal description Blog

excerpts:

"So, what is Autistic Burnout?

Firstly, you may have heard of something called Autistic regression. Autistic regression, which in itself is a horrible name and a terrible descriptor, is often described around the time a child is diagnosed, or as the reason to seek diagnosis.

A parent may describe the child as losing some or all of their verbal communication ability, for any person of any age they may appear more ‘typically Autistic’. As a child, milestones they had passed – walking, toileting, verbally communicating, may revert back to a pre-milestone position. The name Autistic Regression is completely wrong though, as what it does not take into account that it can be and is often temporary, it is part of the ebb and flow of Autistic life, caused by the impact of society and the environment the person lives in, it is NOT a permanent return to a former or less developed state, as many would have you believe.

There are, in my opinion two distinct types of Autistic Burnout that feed into each other.

The first is often termed Social Burnout. This is a frequent occurrence, where just your day, just living, talking to people, being assaulted by senses, exhausts you to the point where you can only collapse in a heap at the end of the day, or at the end of the week, depending on your constitution (remember this won’t be identical for everyone, but it certainly will be similar). This happens at any age, from a baby up until old age.
.......................

The second type of Autistic Burnout.

You crash and you keep crashing.

If you imagine everything that I have described above, the shutting down of mind and body, but imagine it occurring over a period of weeks, or months or even sometimes years.

This is extreme Autistic Burnout. It’s usually the result of the day to day overwhelm combined with an event or trauma, or typically the weight of life building to a point where the Autistic person has to cease to function."

 

I read about this, because I am awaiting my ASD assessment and diagnosed ADHD.

I read that if an Autistic person experiences 'shutdowns' and are not able to fully recover without further exposure to the stressors, they become more vulnerable to longer shutdowns, which can eventually lead to burnout:

https://autismawarenesscentre.com/shutdowns-stress-autism/

They seem to talk mainly about the emotional stress that Autistic people experience, and the sensory overwhelm.

The paper they reference was 2004 and I am not sure how the theory has progressed since then.

 

Amongst the autistic community, this is generally considered to be a real issue.

Unfortunately, it can be difficult for autistic people to identify whether they’re in autistic burnout or whether they’re developing a chronic illness.

 

I was just looking into autistic burnout, and came across this thread.
I am waiting for an assessment for autism, and I've been housebound with ME for 13 years.
I've been trying to work out how they might be connected.

 

I'd say I've had the fatigue—lots and lots—but not really burnout.

I've been lucky enough to have a fair degree of control over my environment, specially as I've lived alone since age 16. I wasn't even allowed to do further/higher education, with all the stresses that brings at a tricky-to-navigate time of life, so that might be a bullet dodged.

 

Miscellaneous thoughts on this:

I've experienced both autistic burnout and ME. The two are vaguely similar. Autistic burnout consists of reduced mental functioning and fatigability. Emotional symptoms like irritability or depression secondary to stress can occur. Trouble with sensory processing is common too. But there's no PEM--worsening of tiredness or trouble concentrating with mental effort is not delayed or absurdly prolonged. And physical activity isn't a problem. At least in my anecdotal experience, recovery from autistic burnout occurs with reduction of stress, but can take months.

I'd like to see biomedical research into its causes and mechanisms, as well as psychosocial research into preventing and managing it. This is a problem that's received very little attention from scientists. Autism suffers from a problem similar to ME, where most research money goes to things patients don't want or care about. There's extensive research into the "pathology" when most autistic people view it as one of the many ways healthy brains can develop. Scientists want to give young children treatments to make them "less autistic" when autistic people want the support necessary to use their gifts through their entire lifespan.

I seriously wonder if there's an overlap between autistic burnout and ME, or it can progress into ME. My ME started during or shortly after severe autistic burnout due to job stress. But maybe that was a coincidence. I think it's possible I suspect much of ME is in the brain; my favorite hypothesis is the one about hypersensitive microglia or low-grade neuroinflammation.

 

My apologies if this is a stupid question, but is autistic burnout similar to the more general ‘over work’ burnout, perhaps more common because a person with autism has to navigate a world that works against them rather than with them or is it something distinct?

I suppose that increased sensory hypersensitivities are an overlap between ME PEM and autistic burnout, that may distinguish both of them from general burnout.

 

It's hard to say because autistic people both have different brains and must expend more effort to function in a society not built for them. I think the cause and course is similar, but that the presentation of autistic vs regular burnout may vary.

 

Last year at age 63 I discovered I was autistic. I score at the top end of the standard tests. The closest I could get to confirmation was a therapist who agreed I easily met the criteria but can't do an official diagnosis. That's expensive, time consuming and not worth the effort at my age.

I credit ME/CFS with the discovery. The exhaustion led to the exposure of a lot of traits that I had masked for a lifetime.

I was annoyed at how long COVID sprouted a rash of medical professionals all making the same mistakes and repeating the same paths already taken on the ME/CFS hunt. I was writing down my thoughts on how I'd managed to do surprisingly well even while being largely bedridden.

The first question I wrote down was "Why do I continue to go work out three times a week, without fail for 40 years, even though I'm so exhausted I go back to bed when I get back?".

The second trait I noted is that even though I'm a computer science geek with no background in medicine, I've spent a lot of time reading medical journals in the past 8 years.

In the gay world, there has been a movement to allow us to be our authentic selves. Having been raised in a different time, I know how much effort it takes to remain unseen. Autism is going through a similar epiphany, realizing that masking behaviours that are harmless is also very tiring.

For most of my life I've taken my autistic traits and turned them into positive attributes. Those traits have also been immensely helpful in coping with ME/CFS.