Too many autistic people end up in psychiatric wards and hospitals in the UK and I am sure in other parts of the world also. Autism is not a psychiatric condition and although it is in the DSM5, it is not a disorder (or a condition) but a naturally occurring brain difference. Many autistic people do have co-occurring mental health problems and approximately 17% of autistic people have OCD for example. But why do so many autistic people become so unwell, end up detained, addicted to substances with high rates of suicidality?
The answer I believe is often burnout - severe exhaustion and sensory overload etc, that as autistic people we might not always appreciate is happening, either because we are unidentified or because of things like alexithymia and interoception differences. In the past I had no idea that I was autistic let alone that what I was experiencing was burnout and that the advice to do more, socialise more and be more active was unhelpful.
The main characteristics of autistic burnout are:
Exhaustion/fatigue (emotional, physical, mental and social).
A loss of executive functioning skills (working memory, emotional regulation, decision making, focus, task initiation, motivation, etc.
Increased and often very extreme sensory overload.
Withdrawing from social situations - sometimes complete withdrawal.
Stop talking/significant changes in communication.
Reduction in self care
Increased meltdowns and shutdowns (meltdowns are an involuntary trauma response and a sign of extreme distress/sensory overload, emotional overwhelm).
No more energy to mask and therefore 'seeming more autistic'
Increased thoughts about suicide
Autism is not a mental health condition and autistic burnout is NOT a psychiatric condition- that needs treatment with psychiatric medications such as anti psychotic drugs.
Due to our differences as autistic people (differences in how our brains and nervous systems are wired), being in environments that are not in sync with those differences means we often respond subconsciously and involuntarily by masking - essentially in order to stay safe. When I say safe I am mostly talking about feeling safe within ourselves, our nervous system. Autistic people (and maybe especially those of us who are PDA (Pathological demand avoidance) and are also ADHD are more often in fight, flight, freeze mode. These are trauma responses.
Some of the differences there can be are when you are autistic (but remember we are not carbon copies of each other, so each autistic person's profile is different):
Social differences: If a social environment is too overwhelming, too demanding, where there are too many expectations to comply with neuro-normative ways of communicating, socialising, experiencing the environment, expressing ourselves, regulating, focussing, learning, etc, that are not natural to an autistic person, then we will likely respond like an octopus and shape shift, changing our colours and movement. Our social batteries as autistic people are often very different and environments can significantly drain us, which leads to exhaustion.
Masking is not something we can necessarily control, it's a response to the environment in order to fit, blend in, camouflage and remain safe. This might take the form of fawning (people pleasing, appeasing, putting other's needs first) which can make us especially vulnerable to victimisation from people we know.
Safe social environments are neuro affirming, inclusive and can often be with other autistic people (neurokin). To create safer environments you might consider the SPACE framework.
Creating safe spaces for autistic people by Laura Hellfeld and Scott Neilson is an excellent resource for understanding the impact of environments on autistic people.
Communication: The ways that autistic people communicate is never wrong or faulty. We do not need to be taught neurotypical ways of communicating and socialising - this is cruel and exhausting (see my blog piece on ABA) and leads to autistic people being traumatised. Autistic communication is different. Verbal communication is not always possible and we need others to be inclusive of the need for alternative forms of communication. An autistic person who does not speak may still be verbal and non speaking does not mean not competent either! Sometimes we are situationally non speaking and in shutdown and in burnout we may stop talking - sometimes for months or even longer. Talking is often exhausting and if in burnout there is often not the energy to answer questions, explain things, ask for help, chat etc. Also in burnout the pre frontal cortex that controls executive functions, has been affected by (hijacked by) the limbic system - so it can be impossible to focus on a conversation, think things through, make decisions and explain things.
Sensory: Each autistic person's sensory profile will differ. We can be hyper sensitive to some sensory input and hypo to others. We might crave certain input and be overwhlemed by others. Do not assume all autistic people hate textures, noises and bright lights.
There are many autistic people who will be overwhelmed by too much background noise especially and certain lighting - so this is usually a good starting point. For example I can't focus on a conversation if I cannot filter out background noise and a flickering light might be so overwhelming that I feel irritable and angry.
Interoception is the sense we all have of our bodies internal signals - such as body temperature, heartbeat, thirst, hunger, emotions, the passing of time and many other signals. An autistic person might be hyper sensitive to these internal signals or be hypo and have a muted experience.
Interoception is also linked with being monotropic and for example being so intensely focussed on something (autistic people are usually highly focussed on fewer things) that we are not able to focus on the signals that we need the toilet, are hungry, in pain, exhausted, or thirsty, etc.
There are of course many other things that I could write about here such as executive functioning differences, differences in our interests and how we might experience and express emotions.
What is autistic burnout?
Autistic burnout is the result of surviving as an autistic person in environments not suited to our needs. When we end up marching to the beat of neuro-normative drums, unaware of or denying our differences and different needs, we become exhausted and can crash, reaching crisis point.
“Autistic burnout is a severely debilitating condition with onset preceded by fatigue from masking autistic traits, interpersonal interactions, an overload of cognitive input, a sensory environment unaccommodating to autistic sensitivities and/or other additional stressors or changes. Onset and episodes of autistic burnout may interact with co-occurring physical and or mental health conditions” (‘Investigating autistic burnout. Final report’, Dr S. Arnold, Julianne Higgins et al Feb 22)
“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” Judy Endow (www.judyendow.com/advocacy/autistic-burnout/)
Research by Dr S. Arnold and Julianne Higgins et al, found that the most common characteristics experienced were:
· Chronic exhaustion 72%
· Sensory overload 80%
· Heightened anxiety 90%
· Low mood 95%
· Increased shutdowns 80%
· Loss of skills 90%
· Suicidal thoughts 64%
· Intrusive thoughts 59%
The Royal College of Psychiatrists describes autistic burnout as "a state of exhaustion, associated with functional and cognitive deterioration and an increase in autism symptomatology, as a consequence of coping with social interaction (including masking) and the sensory environment. It may be a short-lived state (as at the end of a working day), relieved by a relatively brief withdrawal from the stress. However, longer and more severe stress can produce a more sustained state (which entails some form of innate change) which has to wait on its natural remission. It overlaps symptomatically with anxiety and depression, and there may be a heightened risk of suicide.
Its anecdotal basis and the lack of systematic research mean that burnout does not have the status of a formal syndrome or disorder. Nevertheless, the concept captures the need to consider the effect of adjusting somebody’s setting, support, and style of life before assuming their malaise to be a recognised psychiatric disorder." (Royal College of Psychiatrists, The psychiatric management of autism in adults).
Some of the main causes of autistic burnout are:
Prolonged masking - often fawning, camouflaging and identity management in social situations and environments and mostly a subconscious protective trauma response to feeling unsafe in social environments. Masking is not usually a choice an autistic person makes and unmasking can make an autistic person very unsafe and some especially so, particularly when we consider intersectionality.
Prolonged periods of time spent in social situations & environments that drain an autistic person of energy - because the environments are not in sync with the different needs of autistic individuals.
Prolonged sensory overload - autistic people can be hyper and hypo sensitive to all their different senses. Autistic people do not become desensitised to sensory input (or sensory deprivation) and so exposure to sensory overload for example over long periods, will cause them harm and lead to increased meltdowns and exhaustion.
Too many expectations and demands - this is particularly an issue for those with a PDA profile who need more autonomy. Too many demands and expectations can be extremely debilitating for an autistic person, who can need more time and space to process things. Our capacity for all kinds of things is different and too many expectations to perform in ways that are typical can be exhausting.
Double empathy - When people who have different experiences (which might be different neurotypes) are unable to understand and empathise with each other and their life experiences (goes both ways). For autistic people this can lead to isolation and loneliness. Autistic people who are more likely to experience feeling they do not fit, are unheard, misunderstood and misinterpreted.
Stigma - there is a great deal of stigma (surrounding autism and being autistic) that is essentially what leads to most autistic people masking; they are not safe to be their authentic selves, due to a lack of inclusion, understanding, accommodations and environments not being safe spaces.
Being missed and misdiagnosed - (often with personality disorders such as EUPD) Many autistic adults have been missed for many years and
Missed ADHD (and need for ADHD meds) - A person is more likely to experience mental health challenges, become addicted to substances and experience suicidal thoughts/urges when they are both autistic and ADHD. Many also do not understand the fatigue that can be experienced when you are ADHD, due to things like perfectionism, always trying to avoid rejection sensitivity disorder, pushing yourself beyond your capacity, imposter syndrome, etc
Missed physical conditions such as hypermobility, Ehlers Danos Syndrome, PoTs, etc, that can cause significant levels of fatigue. An autistic person can have these co -occurring conditions and may have experienced medical gaslighting, misdiagnosed, not believed and masking pain.
What about depression?
There are many crossovers between depression and autistic burnout, but it is important to understand the distinct differences. Treatment for depression does not work for an autistic person experiencing burnout and may actually exacerbate the burnout symptoms they experience and exhaust them further. I am not saying autistic people cannot be burnt out and depressed, but many are burnt out and not depressed. Getting this wrong can be lethal and lead to wrong support and treatment that harms.
"While Autistic Burnout may co-occur with depression, it is distinct from it. Historically, Autistic Burnout may have been understood as depression. You may even have been diagnosed with depression by your GP when your symptoms might be more accurately understood as Autistic Burnout" Dr Alice Nicholls, ND Psychologist.
“In some cases, marginalised autistic people get stuck with mental health diagnoses that are even more reviled and misunderstood than Autism is. It’s quite common for autistic women to be incorrectly labelled with Borderline Personality Disorder (EUPD) ..... This is a really disastrous diagnosis and is many therapists’ least favourite condition to work with.” Dr Devon Price, (2022) ‘Unmasking Autism - The Power of Embracing Our Hidden Neurodiversity’.
Research Papers
“Having All of Your Internal Resources Exhausted Beyond Measure and Being Left with No Clean-Up Crew”: Defining Autistic Burnout
“Understanding autistic burnout from experts with lived experience”
“A conceptual model of risk and protective factors for autistic burnout”
“Defining autistic burnout”
“Confirming the nature of autistic burnout”
“Investigating autistic burnout. Final report”
“Measuring and validating autistic burnout”
Other information
Royal college of psychiatry (Autistic burnout mentioned in report regarding psychiatric management of autism in adults)
My evidence for parliamentary committee
Downloads available on my website
Autistic burnout network
Other lived experience experts on autistic burnout
Judy Endow - http://www.judyendow.com/
Keiran Rose - https://theautisticadvocate.com/
Helen Edgar (Autistic Realms) - https://www.autisticrealms.com/
Kristy Forbes - https://www.kristyforbes.com.au/
What helps an individual experiencing autistic burnout?
There are key things that make up recovery from burnout for an autistic person and this includes:
1. Rest: I am not just talking about physical rest. There are actually 7 types of rest: Physical, Mental, Emotional, Social, Spiritual, Sensory and Creative.
Resting is crucial for recovery from autistic burnout and it can take time, for some a very long time (even years). Doing more and getting active is not what you should be encouraging an autistic person to do when they are in burnout. That is not to say they might not go out on walks in nature but it's not a time for going to the gym and attending group therapy (in most cases). It is a time to rest and reduce.
2. Time with interests: Because autistic brains and nervous systems are ‘interest based’ (see Monotropism) therefore having plenty of time in flow states with their interests and passions (special interests) is really important and a way to not only rest but regulate and heal. Be aware that not being able to enter flow states or spending too long in flow states can also lead to burnout due to inertia. It is sometimes hard to get a balance.
3. Low/lower demands and expectations: High demands and expectations are often triggers for autistic burnout and so it is important in recovery that ordinary everyday demands, education and employment demands, sensory, social and communication demands etc, are significantly reduced wherever possible.
4. Time: You cannot rush recovery from autistic burnout. It is a process and you cannot set timescales either - as it is different for each autistic individual. This can be very challenging for autistic adults who are parent/carers (who may also be caring for children experiencing burnout). If they are working then time off work to rest is difficult, and it can mean many might lose jobs or have to leave. For autistic children and young people it often means attending school, college or university is usually impossible and more often alternative education pathways are required.
5. Understanding capacity: Autistic people have differences in their social energy (made up of physical, mental and emotional energy). Their social energy can be affected by numerous things including: masking, sensory overload and too many demands upon them. – these are all exhausting. When burnt out, doing more and being in more social situations will exacerbate their experiences. Often, they naturally will seek out more alone time, as their nervous system seeks to heal.
6. Neurokin and co regulation: Autistic people will often feel safer with their neurokin (usually other autistic people they feel a connection with). It is easier to be unmasked when there are no neurotypical social expectations. Co regulation is also often an important aspect of healing for an autistic person – regulation, connection, synergy and synchronicity with another. Many of us find self regulation much harder and this is not because we lack the skills or need to learn resilience. We need connection with another trusted person (or pet) to help us regulate our emotions and pur senses
7. Autonomy: This is something autistic people need more of but especially if they have a PDA profile (a persistent need for autonomy) and it is really important in the recovery journey. Autonomy, equity and having a sense of agency is crucial for feeling safe when PDA, or anxiety increases significantly and the trauma response is easily triggered.