When an autistic brain gets pushed too far, it pushes back.
Originally published in Invisible Illness, Oct 26, 2021
Photo by Pawel Czerwinski on Unsplash
Being autistic is a mixed bag. While I love and am grateful for many of my autistic traits, there are many aspects that are just plain symptoms; like sensory sensitivities, exhaustion, and executive dysfunction that limit my ability to participate in life.
And sometimes those unwanted autistic bits, the symptoms, shoot to completely unworkable levels due to overexertion — this is called autistic burnout.
In 2020, a study supported by the National Institute for Mental Health and conducted by AASPIRE finally provided a formal 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.
While the more commonly used meaning of burnout refers to occupational burnout, work-sourced depletion resulting in less ability to do it; autistic burnout is specific to Autists and comes from life demanding more than we can deliver without support (and support can be very hard to come by, especially for autistic adults).
Worse, autistic burnout is highly associated with suicidal ideation and behavior.
From the same study, “[Autistic burnout] is an important issue for the autistic community because it is described as leading to distress; loss of work, school, health, and quality of life; and even suicidal behavior.”
The study also quotes an Autist:
[My situation] became way too much. After I [quit my job], I found it increasingly difficult to speak to people I didn’t know and became very depressed. I was told that this was considered autistic regression by a therapist. I was unable to work for several years after this experience and attempted suicide/spent time in the mental hospital before being able to get my life back in order.
Again from the study, “Informally, autistic adults describe how burnout has cost them jobs, friends, activities, independence, mental and physical health, and pushed them to suicidal behavior.”
I can personally attest to these quotes. It’s like losing the ability to be who you are, it can steal your whole life.
A study published in Sage Journals this year further elaborates:
“Autistic Burnout is a severely debilitating condition with onset preceded by fatigue from camouflaging or masking autistic traits, interpersonal interactions, an overload of cognitive input*, a sensory environment unaccommodating to autistic sensitivities and/or other additional stressors or changes. Onset and episodes of autistic burnout may interact with co-occurring physical and/or mental health conditions.
The following criteria must be met;
1. Significant mental and physical exhaustion
2. Interpersonal withdrawal.With one or more of the following;
1. Significant reduction in social, occupational, educational, academic, behavioural, or other important areas of functioning.
2. Confusion, difficulties with executive function**, and/or dissociative states.
3. Increased intensity of autistic traits and/or reduced capacity to camouflage/mask e.g. increased sensory sensitivity, repetitive or stimming behaviour, difficulty engaging or communication with others.The condition is not better explained by a psychiatric illness such as depression, psychosis, personality disorder, trauma- and stressor-related disorders. Extended or chronic episodes of autistic burnout may be preceded by brief or intermittent episodes.
*Cognitive input, refers to thinking and mental processing
**Please note, executive function refers to ‘the mental capacity to focus attention, to process information while completing other tasks, and to plan and remember instructions.’”
So, basically — autistic burnout has the ability to make an already-challenged life completely impossible.
Yikes.
What Can Be Done to Prevent it?
Photo by Patrick Hendry on Unsplash
Preventing autistic burnout in oneself is all about naming your needs and knowing that they are valid.
Being autistic in NT society, we get primed to disregard needs that aren’t typical, but when we ignore them for extended periods, it adds up…and the price is extreme function loss and general hell that is autistic burnout.
For me, just figuring out what my needs are after masking them for so long has been a process; learning to be present with my body, checking in with my nervous system, and watching my mind are helping me to identify when I’m pushing myself too hard, thereby sending myself (further) into burnout.
Additionally, masking Autistic traits seems to be the most commonly cited reason to wind up in the seriously debilitated state that is autistic burnout, so it’s important that we aren’t masking too much.
From the first study, “By far the most prominent life stressor was masking, or the need to suppress autistic traits or disability, or pretend to be nonautistic.”
It also quotes a participant:
The metaphor I use is that long-term camouflaging and masking leaves behind a kind of psychic plaque in the mental and emotional arteries. Like the buildup of physical plaque over time can result in heart attack or stroke, the buildup of this psychic plaque over time can result in burnout.
We can’t just pretend to be neurotypical our whole lives, but via formal classes or persistent negative feedback from others, Autists (and neurodiverse people at large) get taught we ought to. Our internal wiring is different, so we’re different, and that needs to be more okay.
If you’ve got an Autist in your home or workplace, please listen to what their needs are, take them seriously, and know that the root of the problem is the most important thing.
Neurological overwhelm is usually the core problem, likely due to an environmental sensory issue; and in many cases, simple adjustments and/or accommodation tools will go a long way in helping the person to do their thing effectively without sending themselves into autistic burnout. Also, if we seem like we’re pushing ourselves too hard, just asking if we need a hand with something can go a long way.
The only way out of burnout is rest, rest, rest, and more REST, likely weeks, months, or even years — so taking breaks, making time to sort out accommodations, etc. is seriously worth it. And if you’re also in burnout, I hope you’re finding the rest you so desperately need; may we both be out of it soon.