Nothing About Us Without Us
Who: Raymaker and colleagues
Journal: Autism in Adulthood
Title: “Having all of your internal resources exhausted beyond measure and being left with no clean-up crew”:
Defining Autistic Burnout.
- Life stressors (lead to)
- Cumulative load
- Barriers to support (lead to)
- Inability to obtain relief (leads to)
- Expectations outweigh ability
Causes of burnout:
1) Life stressors:
Masking, expectations, disability management, life-changes
2) Cumulative load
3) Barriers to support:
gaslighting/dismissal, poor boundaries & self-advocacy, cannot take a break, lack of external resources/support
4) Inability to obtain relief
which all culminate in
5) Expectations outweigh ability
“These periods of burnout caused problems at school and work. I would lose executive function and self-care skills. My capacity for sensory and social overload dwindled to near nothing. I avoided speaking and retreated from socialising. I was spent. I couldn’t maintain the facade anymore. I had to stop and pay the price.”
Characteristics of burnout:
Loss of Skills
Reduced Tolerance to Stimuli
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.
Burnout leads to…
Negative impact on physical and mental health.
Decreased capacity for independent living.
Decreased quality of life.
Increased self-injury, suicidality, & suicide attempts.
Autistic participants experienced a distinct lack of empathy from neurotypical individuals.
“[The burnout] made me feel worthless because I went from being a functional member of society to somebody who wasn’t working… But at the same time I wanted to work and my siblings were telling me that I needed to work, and… Not being able to do that makes you feel worthless, it makes you feel… Just not as, I don’t know, worthy?”
Potential solutions for autistic burnout:
Autistic participants came up with the following potential solutions.
- Acceptance & Social Support, including individual support, community support, and peer support.
“Have a healthy support system setup of people who will accept you as you are and not try to change, fix, or shame you.”
- Being autistic, including attending to your autistic needs, unmasking, and utilising your autistic strengths.
“A big sensory break every few days, or weeks, coupled with smaller sensory breaks throughout the day could make the world of difference…”
3) Formal support, including reasonable accommodations, instrumental support, and mental health support.
“Dealing honestly with scary and difficult emotions might actually be a way to prevent burnout.”
4) Reduced load, including time off, breaks, social withdrawal, and reduced activity.
“The biggest thing of all you can give yourself, or your loved one, is time.”
5) Self-advocacy and health, including setting boundaries, asking for help, and being healthy.
“It’s okay to say no if people are asking things of you that you don’t feel like you can cope with.”
6) Self-knowledge, including early recognition, ASD diagnosis, and understanding patterns and making strategic decision.
“I’m recovering my ability to listen to my own body, after decades of being taught to distrust and override my very own senses.”