Dr Dora Raymaker, Research Assistant Professor at Portland State University, discusses research exploring autistic people's experiences of autistic burnout. This includes what autistic burnout feels like, why it might happen and what can be done to prevent it.

Autistic people often talk about autistic burnout as a source of distress, but it’s just starting to be recognised in wider conversations. Academic Autism Spectrum Partnership in Research and Education (AASPIRE) conducted a qualitative study to better understand and define autistic burnout (Raymaker et al. 2020). The study involved interviews with autistic adults and analysis of public internet sources.

Definition of autistic burnout

From what we learned we created the following definition of 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.

Reasons why autistic burnout might occur

People described a collection of life stressors.

• Masking their autistic traits, for example by suppressing autistic behaviours, pretending to be non-autistic, or working very hard to act in a non-autistic way.
• Difficult or unreachable expectations from family, school, work, or society in general.
• Stress from living in a world not set up to accommodate autistic people, for example managing the stress of having to be in noisy environments.
• Life-changes and transitions that are stressful for anyone, for example transitioning from school to work, experiencing a mental health crisis, or the death of someone close.

They also described barriers to getting support or relief from the stress.

• Gaslighting or dismissal when attempting to describe the autistic burnout, for example being told that everyone has these experiences, that they just need to try harder, or that they are making it up.
• Poor boundaries or self-advocacy with respect to saying no, taking a break, or asking for help. This may be due to trauma, fear, lack of assistance in learning how, and a history of negative responses from others when they tried.
• Inability to take a break from stress that is so pervasive (“How do you take a break from life?”).
• Insufficient external resources and supports, for example inadequate disability services, lack of useful social support.

Together, the life stressors contributed to a cumulative load of stress and the barriers to support meant they were unable to get relief from the stress.  At some point, the expectations on the person far exceeded anything they were able to do. Every part of them gave up and autistic burnout resulted. Or, as one study participant summarised:

‘‘Autistic burnout is a state of physical and mental fatigue, heightened stress, and diminished capacity to manage life skills, sensory input, and/or social interactions, which comes from years of being severely overtaxed by the strain of trying to live up to demands that are out of sync with our needs.’’ 

Reducing or Preventing Autistic Burnout

Participants told us about ways that they found to relieve or prevent their autistic burnout, and advice they have for others.

• Acceptance and support – interacting with others who could accept them for who they were, without any need to masking or pretend. This could be one-on-one with family members or friends; on a community level of groups with accepting cultures; or on a peer level, especially finding other autistic people who could validate their experiences and offer information and emotional/social support from lived experience.
• Being autistic – attending to autistic needs like stimming and spending time with intense interests and comfort items, unmasking, using autistic strengths or doing things in an autistic way.
• Formal supports – receiving reasonable adjustments at school or work, physical support like someone to provide groceries, and mental health support.
• Reduced load – taking time off, more breaks, reducing social activity or other types of more stressful activities.
• Self-advocacy and health – learning how to set healthy boundaries and expectations from others, and what to do when others aren’t respecting boundaries. Learning how to ask for help in a way others might be responsive to, and leading as healthy a lifestyle as possible (for example participants described how exercising, sleeping, eating well, and doing things that made them happy helped them out of autistic burnout once they had enough energy to do them).
• Self-knowledge – learning how to recognise and act on the early signs of autistic burnout (for example by cancelling social plans to have more rest), having an autism diagnosis, and understanding one’s own patterns of behaviour and feelings.

Recommendations and next steps

We recommend increasing awareness about autistic burnout, and connecting with the autistic community and peers that understand autistic burnout. The experiences of people who describe being in a state of autistic burnout should be validated, whether they use the term or not. We recommend that therapists and clinicians learn to recognise autistic burnout in clients and offer strategies for relief. 

In general, we recommend others be aware of the potential dangers of teaching autistic people to mask or suppress their autistic traits. Suicide prevention programs may want to consider the potential role of burnout. We strongly support interventions to decrease the discrimination and stigma associated with autism and disability in society, and to improve access to reasonable adjustments and acceptance.

Though an important start to the conversation, our findings are from a small qualitative study of a non-random sample. They are also limited to autism; we feel that this may be a broader experience of people who experience disability. Therefore we highly recommend more research in this new and urgent area, especially in collaboration with autistic people who can contribute the expertise of their lived experience.