An autistic life is not an easy life. There is the potential for great stress and chronic exhaustion from trying to cope with social and sensory experiences, being misunderstood and criticized, high levels of anxiety and, for many reasons, not feeling in touch with or able to be the authentic self. In addition, there may be self-imposed expectations that are greater than coping mechanisms and abilities. Subsequent stress can build up over time that can lead to autistic burnout, which is characterised by increased social withdrawal, a form of ‘hibernation’ and reduced executive functioning, the frontal lobes are “closed” awaiting recovery.
Signs of Autistic Burnout
The concept of an autistic burnout has come from autobiographies, Internet support groups and clinical experience. The provisional criteria for autistic burnout, according to Higgins et al (2021) are:
- Significant mental and physical exhaustion
- Interpersonal withdrawal
With one or more of the following:
- Significant reduction in social, occupational, educational, academic, behavioural, or other important areas of functioning
- Confusion, difficulties with executive function and/or dissociative states
- Increased intensity of autistic traits and/or reduced capacity to camouflage/mask autistic characteristics
There can be associated features such as:
- Low self-esteem and not knowing what to do to restore mental energy levels
- Confusion as to whether the signs are indicative of a clinical depression
- Loss of self-care skills and ability to regulate emotions
- Persistent difficulties with daily living skills.
When considering whether someone has autistic burnout, it is important to review the similarities and differences between autistic burnout and depression. In comparison to the signs of depression, in autistic burnout there is increased sensory sensitivity and the need to isolate in order to recover. The current clinical and experiential wisdom is that autistic burnout is a cause of depression, and that the depression is likely to reduce if measures are taken to resolve the causes of autistic burnout.
Causes of Autistic Burnout
The causes are due to:
- A lack of autism awareness and accommodations at school, work, within the family, government agencies and society
- Feelings of being judged negatively and rejected
- Being perceived as defective
- Lack of progress academically or at work
- More demands at school, work or home than coping abilities
- Lack of connection and relationships with others
- Diminishing mental energy and increasing stress and self-doubt
- Camouflaging autism and/or mental health issues
Autistic burnouts can last months or years and may start in the adolescent years. A burnout may be triggered by life changes such as leaving high school, starting a new job or promotion or the end of a friendship or relationship. The experience of burnout may precede and precipitate a diagnosis of autism, and confirmation of the diagnosis may lead to the recognition of autistic burnout.
A burnout is more likely for autistic adults who camouflage and suppress their autism. They do not communicate their true support needs and level of exhaustion and valiantly try to cope at school or work. However, the cost of peer acceptance is in terms of emotional energy depletion that contributes to a burnout. Camouflaging becomes a barrier to support and relief and increases stress.
Ending an Autistic Burnout and Recovery
The first stage is recognising being in a state of burnout. It is a process that requires self-awareness and being prepared and able to disclose the fatigue, stress, and despair. Those who know the autistic person well may perceive the signs of burnout before the autistic person does themselves. This can be due to problems with interoception (perceiving internal mental states) and denial.
There may need to be guidance and support in becoming a self-advocate and explaining to those at school or work, the daily challenges experienced by an autistic person and the accommodations and adjustments needed to reduce stress and recover from autistic burnout.
Empathy and practical suggestions may be obtained from the autistic online community, sharing experiences and strategies to end a burnout. The greatest expertise is with those who have themselves experienced autistic burnout.
The autistic person’s current expectations, lifestyle and supportive environment need to be reviewed with a stress assessment to determine which aspects of the person’s life can be ‘pruned’ to help restore energy levels. This may include changing employer, career, and lifestyle. A psychologist or life coach can help determine what depletes and what restores energy levels. Energy restoration can be achieved by activities such as being in nature, acquiring knowledge regarding a special interest, part time work and a social network that embraces autism and does not accept camouflaging the real self. There also needs to be encouragement to be the authentic self and explain rather than inhibit autistic characteristics.
As clinicians, we have a few words of caution regarding the value and effectiveness of cognitive behaviour therapy (CBT) and behavioural activation as automatic therapy for an autistic burnout and associated depression. The genuine need for withdrawal and downtime (avoidance) for recovery may be contrary to the central themes of CBT and the characteristic of reduced cognitive capacity may inhibit the effectiveness of a cognitive based therapy.
Maja Toudal, an autistic psychologist in Copenhagen and Tony are writing a book on Energy Accounting as a means of stress reduction and prevention of the experience of burnout. We anticipate the book will be published by Jessica Kingsley Publishers towards the end of 2022. We include a description of Energy Accounting in our forthcoming webinars Autistic Girls & Women on the 25th of March and Emotion Management for Autistic Children and Adolescents on the 22nd of April which will include sections on managing a meltdown, shut down and recovering from burnout.
We are increasingly recognising the causes, signs, and effects of an autistic burnout. We need to share personal experiences and clinical wisdom to ensure burnouts are recognised and strategies developed for recovery and prevention.
Higgins et al (2021) autism 25 2356-2369
Mantzalas et al (2021) Autism in Adulthood (published online)
Raymaker et al (2020) Autism in Adulthood 2 132-143