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.
• Chronic Exhaustion
• 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.
1) Life stressors
2) Cumulative load
3) Barriers to support
4) Inability to obtain relief
All lead to
5) Expectations outweigh ability
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.
Potential solutions for autistic burnout:
Autistic participants came up with the following potential solutions.
1) Acceptance & Social Support, including individual, community, 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.”
2) 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.”