Written evidence submitted by Viv Dawes (PHS0029)

Autistic Burnout

Autistic burnout is sadly an experience that autistic adults, children and young people can go through, throughout their lives which can be devastating. It is thought that as much as 80% of autistic people may go through this. It affects every aspect of the individual’s psychological, physical and emotional state and can lead to an extreme state of crisis.  The main symptoms of autistic burnout are: fatigue, sensory overload and losing skills.

Preventing autistic people reaching crisis:

It is particularly important for all professionals, who may work with, support, care for and encounter autistic people, to accept, recognise and understand autistic burnout, as it is a state of crisis and can lead to a period of extreme crisis.  If we are to prevent autistic people reaching crisis, then we must listen to autistic voices; autistic advocates, researchers and writers have been talking about autistic burnout for years.  With rates of suicide in the autistic community at such high rates (in the UK alone autistic adults are 9x more likely to die by suicide and autistic women 13 x more likely) and autistic burnout being a cause of crisis that can lead to suicide – it is time for this issue to be taken seriously by everyone.

The main characteristics of autistic burnout:

Some of the characteristics of autistic burnout are symptoms and behaviours that may already be present in an autistic person’s life, that may increase significantly in burnout.

Other diagnoses can overshadow autistic burnout:

If an autistic person has other diagnoses, co-existing conditions (or misdiagnosed mental health condition/personality disorder), then it can mean autistic burnout is missed by professionals. This can lead to the wrong support, therapy or advice being given to the individual, or no support in many cases. Autistic burnout is often misdiagnosed as depression and although many autistic people experiencing burnout are struggling with depression and anxiety, burnout must be recognised as a separate issue.  Clinicians giving treatments for depression to an autistic person in autistic burnout, may actually make matters worse.  See the research article by Samual RC Arnold, Dept of Developmental Disability Neuropsychiatry, Sydney, Australia ‘Towards the measurement of autistic burnout’  and also https://studentlife.lincoln.ac.uk/2021/05/18/the-difference-between-autistic-burnout-and-depression/

The other misconception about autistic burnout is that it is regression.  Autistic burnout is not regression. The individual often loses skills in burnout due to executive functioning differences and struggles. It is common for autistic people to also have ADHD and this can mean a more complex presentation, especially in regards to executive functioning.

Communication differences:

Whilst in a state of autistic burnout, an autistic person may stop talking or find it harder to explain, express and describe what they are experiencing or feeling, and they may not have the words to explain their symptoms. This is due to numerous factors including experiencing shutdowns and an autistic person’s potential interoception differences and struggles.  Often also something called Alexithymia will mean an autistic person won’t always have words to describe their emotional state.

Screening for and giving the right advice and support:

Diagnosed (or undiagnosed) autistic people, need the right advice and information regarding autistic burnout.  Prevention of burnout, wherever possible is ultimately the best treatment.  But this is not always possible and in order to prevent crisis, autistic people need help to deal with and recover from burnout. The advice for helping autistic people experiencing burnout, is mainly relating to rest and recharging their battery, as they are exhausted and often have no resources left to cope. A way of screening for autistic burnout could not only improve the lives of millions of autistic people but will save lives too. The research article ‘Towards the measurement of autistic burnout’ – Samual RC Arnold, (Dept of Developmental Disability Neuropsychiatry, Sydney, Australia) makes a strong point about the need for a screening tool.

Girls (and people raised female), masking and autistic burnout:

Boys are diagnosed 2-3 years earlier than girls.  One of the major problems with this is that by the time girls (and people raised female/assigned female at birth), are identified as autistic, (due to having more of an internal presentation than boys) they are already struggling with:

School attendance (usually in secondary school)

Sensory overload

Emotional dysregulation

Mental health

Self harm

Suicidal thoughts and other intrusive thoughts

Depression and anxiety

Many autistic girls are not identified as autistic until they start senior school.  This is at the same time as they are experiencing puberty and trying to cope with the enormous transition of changing from primary to secondary schools – (secondary schools are usually less gentle, pastoral settings, with more students, sensory stress, pressure and lessons, teachers etc). Girls are far more likely to mask their differences whether they have a diagnosis or not, mostly due to societal pressures on females.

Masking for autistic people is unbelievably exhausting, as it uses up a lot of energy and resources to try to appear neurotypical sometimes most of the day, every day.  Ask any parent of an autistic child about the coke bottle effect of their child at school all day, then coming home and exploding in a meltdown, as they have had to mask all day.  Autistic people generally have less capacity for social situations, even if they are extroverted, due to having a different kind of neurology (sensory differences, etc).  Prolonged autistic masking, as opposed to neurotypical masking, leads to trauma and eventually to crisis – burnout. Is crisis 

In autistic burnout, the individual can no longer mask their differences, as they are exhausted, overwhelmed emotionally, physically and mentally. The results of this can be that the individual may ‘appear more autistic’, experience more meltdowns and shutdowns, their mental health suffers and for children it leads to struggling to get into school –sometimes at all.  They are not refusing or resisting, they are exhausted (exhaustion may not always be obvious and also being ADHD may be a factor too), they are struggling and need help to rest and restore the lost energy.  The environmental factors are what needs to be addressed and be adjusted, as well as supporting the individual with the correct support in their recovery process.

In a support group for parents of autistic teens that I run, every single parent there has had battles with their school.  They are trying to get their child’s needs met, but too often within a system that does not always understand the actual needs of that child (and especially if they are female or a child raised as female.) Schools will often expect the child to make the changes – to be more resilient, to adapt, to learn to cope – this leads to more masking and again especially for autistic girls.

Much of the advice for recovery from autistic burnout, also helps with prevention:

It’s going to take time - weeks and maybe months to recover/heal

Rest (to recharge their social battery)

They need a safe place with reduced sensory input (a low demand environment)

Encourage special interests and passions (that can restore energy)

Alone time in a safe place

Time with neurodivergent people

Online support

Places to learn to freely unmask

Freedom to stim, to help with emotional and sensory regulation

Reduce demands and expectations

Talk therapy is mostly not helpful, especially if it is not adjusted for an autistic person

Once in a state of extreme burnout crisis, if they are unable to rest, recover and access an appropriate safe place, an autistic person is at higher risk of suicide.  There may also be offending behaviour, in some cases leading to custodial prison sentences. With changes to the mental health bill regarding autistic people and admission to inpatient settings, the possibility that more autistic people in crisis will end up in prison is a significant concern.

To find out more about autistic burnout:

1. https://psychcentral.com/autism/autistic-burnout

2. ‘Having All of Your Internal Resources Exhausted Beyond Measure and Being Left with No

Cleanup Crew: Defining Autistic Burnout’ - Dr Dora M. Raymaker, PhD

3. ‘Towards the measurement of autistic burnout’ – Samual RC Arnold, Dept of Developmental Disability Neuropsychiatry, Sydney, Australia

4. https://studentlife.lincoln.ac.uk/2021/05/18/the-difference-between-autistic-burnout-and-depression/

5. Kieran Rose- The autistic advocate, ‘An autistic burnout’

Viv Dawes is an autistic advocate, writer and trainer.  She has 25 years’ experience of working with vulnerable adults and young people, including as a Snr Practitioner for the NHS in a women’s prison, managing a team of prison drug workers. Viv also started and managed an addiction recovery programme for 10 years in NE Hampshire. She is currently writing a book about understanding autistic burnout.

February 2023