This blog was written by PAPYRUS supporter, Viv Dawes. Viv is a lived experience Autistic advocate, trainer and author. She has 25 years of experience working with vulnerable people, including in the criminal justice system.
If you speak with autistic people about fatigue, many may share experiences of enduring exhaustion throughout their lives. The exhaustion and consequent effects upon our lives that we experience are not because we are autistic, but because many environments are designed for neurotypical brains and not brains that diverge; these environments can be challenging for autistic people because the neurotypical demand of the climate outweighs our capacity as autistic people.
Autistic brains are more likely to be what’s known as ‘monotropic’. Monotropism is a person’s tendency to focus their attention on a small number of interests at any time, tending to miss things outside of this attention tunnel. In our focus tunnels, everything can be very intense; therefore, constantly changing our focus in certain environments can be debilitating and exhausting.
More information about monotropism can be found here.
Autistic burnout is something the autistic community has been aware of for many years, but only recently has it started to be recognised by some professionals. Due to the tendency to identify individuals as autistic only at moments of crisis, many, particularly women and individuals of marginalised genders, may have previously received misdiagnoses such as depression, anxiety, bipolar disorder, borderline personality disorder or other conditions in their past experiences of crisis. Dr Judy Eaton provides information on her website regarding the misdiagnosis of autistic people.
What is Autistic burnout?
According to Judy Endow, autistic burnout “is a state of physical and mental fatigue, heightened stress and diminished capacity to manage life skills, sensory input and 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 your needs”.
For some, autistic burnout is so harrowing and so very debilitating that it is life-changing, with many autistic people unable to attend or engage with school, college, university or work. It has affected individuals so much that many lose the ability to speak (a sign of shutdown), and some even lose their voice for some time. Many don’t leave their bedrooms for months on end, cannot engage with anyone and don’t leave the house either. During burnout, they might lose many of their brain’s executive functions (working memory, emotional regulation, decision making, task initiation, etc), and their sensory system goes into overload, often leading to increased meltdowns and shutdowns. All this takes its toll and the cost is sometimes so high for many autistic people.
Many, as did I with my son, assume it is depression. It shares so many crossovers with depression and other conditions (including Paediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections (PANDAS) and Paediatric Acute-onset Neuropsychiatric Syndrome (PANS)- in children). The problem is that autistic burnout does not respond to medical treatment or mental health treatment, and treating burnout as depression can be debilitating for the autistic person. The autistic person’s brain is in extreme survival mode and needs the rest their body and brain are desperate for to experience recovery.
How do I know I am experiencing autistic burnout?
- Extreme fatigue
- Withdrawing more and more from social situations
- Loss of executive function skills (working memory, emotional regulation, decision-making, focus, task initiation, self-control, etc)
- Sensory overload increases significantly
- Anxiety increases
- Increased shutdowns and meltdowns
- Some may also experience intrusive or suicidal thoughts
Why do autistic people burn out?
- Prolonged autistic masking (which is often fawning – people pleasing, putting other people’s needs first),
- Prolonged sensory overload, which can be traumatising.
- Too many demands and expectations that outweigh the autistic person’s capacity and energy levels.
The impact of autistic burnout
Some autistic people’s experience of autistic burnout is very extreme, leading to a significant period of crisis. They might seem to be speeding up and manic. If, for example, they are AuDHD (autistic and ADHD), then executive functioning differences in the ADHD brain make emotional regulation much more difficult. Along with the possibility of Alexithymia* and interoception* differences- this can also make understanding how exhausted they are challenging for the individual.
Struggling to recognise their exhaustion and difficulty in finding rest and balance can lead an autistic person to push themselves too far, often resulting in a crisis. Inability to engage fully in their interests —activities that usually help regulate and provide comfort for their unique way of thinking/monotropic brains —may sometimes prompt seeking control through substances to manage overwhelming thoughts and emotions. However, this reliance on substances can heighten hyper-vigilance and paranoia, potentially increasing the chances of experiencing hallucinations. It’s important to note that hallucinations, not uncommon in autistic individuals due to brain chemistry variances, might manifest as intrusive thoughts or sensory overload.
*Alexithymia means the inability to recognise or describe your own emotions.
*Interoception is a person’s sense of internal feelings (emotions, pain, hunger, thirst, etc)
What can help autistic burnout?
- Connecting with other autistic people online. This can be especially beneficial if there are no in-person outlets.
- Resting and not pushing yourself is essential, as recovery takes time.
- Lower demands and expectations. What needs to stop? What demands and expectations are exhausting you? This could include people, environments, tasks, experiences.
- Understanding what helps you regulate your emotions and sensory system is important.
- Gaming, creativity, sudoku, music, sensory aids, weighted blankets, pets, walking, watching your favourite films or TV, being in nature, reading, etc. are just some things that can help some autistic people.
- Allowing yourself to stim whenever you need to (stimming helps with regulation).
- Spending time with your passions and interests can help you feel safe and regulated.
- If you are AuDHD, then you might want to consider ADHD medication as it can help with executive functioning differences such as emotional regulation. This would have to be prescribed by the team who diagnosed your ADHD or a team local to you that does this (your GP could refer you.
- Learning about how to be and celebrate your authentic autistic self; often this is easier with other autistic people.
If you are struggling with substance use, there are people who will listen and have often been there themselves. Finding your local drug and alcohol team could be a good place to start. If you explain to them that you are autistic/AuDHD, they may have workers with lived experience and particular groups or services for neurodivergent clients.