Study explores what it's like to experience autistic burnout

By guest author Dan Carney

Burnout has been on everyone's minds over the last couple of years. Many people report being exhausted after working long hours to make ends meet amid the rising cost of living, or from dealing with the long-term effects of the COVID pandemic. The Prime Minister of New Zealand Jacinda Ardern recently invoked burnout when resigning, saying she no longer had "enough in the tank".

For autistic people, there are the additional challenges of living in a world largely designed by - and for - neurotypical people. Coping with this world can be exhausting: for instance, many autistic people face the constant effort of camouflaging or masking autistic characteristics in order to fit in. This can lead to a debilitating condition known as "autistic burnout".

However, so far there has been little research into autistic burnout, making it difficult to design prevention and recovery methods. It's still unclear what kind of stressors are most likely to lead to the condition, for example, or how long or frequent burnout episodes typically are. Now, in a paper in Autism, an Australian research team led by Samuel Arnold from UNSW Sydney has attempted to further pinpoint the exact nature of the phenomenon.

Arnold and colleagues surveyed 141 participants with a clinical autism diagnosis (64% female, 16% male, 20% reporting another gender), who had experienced a self-identified episode of autistic burnout. The primary tool, which the team developed themselves, was the Autistic Burnout Survey. Participants rated how much they agreed with various statements relating to autistic burnout. Some of these addressed experiences during an episode of burnout (e.g. feelings of exhaustion or social withdrawal), while others focused on the factors that led to episodes (e.g. particular emotional or environmental triggers). Participants also indicated the consequences of burnout and which factors helped them recover. Additional open-ended items allowed participants to give more detail about their experience.

The most highly endorsed items relating to burnout experience involved exhaustion and social withdrawal (e.g. "I felt extremely tired or worn out" or "I withdrew from social situations.") Items relating to meltdown (e.g. "I would hurt myself" or "I would yell uncontrollably") were the least strongly endorsed.

Participants most strongly agreed that stress and sensory environmental factors led to burnout onset (e.g. "a build-up of life stressors" or "being overloaded by sensory and social information in my environment"). Interestingly, these seemed to be a slightly more common cause than camouflaging or masking, though the latter were still important factors. Common responses to the open-ended items included descriptions of physical signs (e.g. lightheadedness, dizzy spells), difficulties recognising burnout, and the existence of both chronic and acute episodes.

To aid recovery, participants most commonly endorsed withdrawing from social situations and taking downtime, while stimming (repetitive or unusual self-stimulating actions or noises) was the least common coping mechanism. The most frequently cited consequences of burnout related to feelings of self-doubt and ongoing fatigue.

Participants' written responses often mentioned that they faced a lack of support and understanding, and unaccommodating environments. Participants noted having to convince family members or health professionals that burnout is real, for instance, or reported that workplace difficulties, such as the inability to do things at their own pace, led to problems. Many suggested that full understanding or accommodation on the part of neurotypical people was prevented by profound differences between their experiences and those of autistic people. The authors point out that such a problem, which they call perspective disconnect, may lead to difficulties in both parties understanding the needs and feelings of the other during burnout episodes.

There was no strong pattern regarding frequency and duration of episodes: some people reported daily experiences of burnout, while others said it happened less than once per year. Burnout was commonly misdiagnosed, however: 61% of participants thought burnout better explained previous diagnoses, particularly depression and anxiety. Some suggested that misdiagnosis could be avoided if practitioners were better trained to recognise the phenomenon.

Overall, this is a detailed study that further pinpoints the experience of autistic burnout by outlining some of the common factors involved. It offers a platform for further work which can continue to develop our understanding of the phenomenon and determine the extent to which it is distinct from burnout in neurotypical individuals and other established autism-specific phenomena such as autistic shutdown. This will hopefully lead to better tools for assessment and intervention, enhanced clinician understanding and empathy, and more accommodating neurotypical environments.

About the author

Dr. Dan Carney is a UK academic psychologist specialising in developmental disorders. He undertook his post-doctoral research fellowship at London South Bank University, and his published work has examined cognition, memory, and inner speech processes in Williams syndrome and Down syndrome, as well as savant skills in autism.