Autistic Burnout, Bodymind and Soul

Kieran Rose (2018) describes autistic burnout as a ‘crash where you keep on crashing’. This resonates deeply.

I have experienced cycles of burnout throughout my life due to systemic unmet needs living as an autistic person in a world primarily designed for non-autistic people. The double empathy problem (Milton, 2012) is real, and as explained in my previous blogs, it is extreme and DEEP (Edgar, 2024). The Double Empathy Extreme Problem arises from feelings of disconnect; not only from cultural, sexual, political, religious, neurodivergent, or any other cross-section of differences but also through embodiment, or lack thereof.

I have been reflecting on my persistent cycles of burnout and why my body and mind never feel fully recovered, rested and restored no matter how much sleep I get or what I try. I have always had a busy family life and career as a teacher, but as an autistic person, I do not see or feel a boundary between myself and my environment; I feel a deep attunement to the space around me. However, I also feel a deep disconnect with the majority of society and the pressures of feeling I need to conform to dominant social norms that have always left me on the edge, feeling separate and, in many ways, disembodied and shattered into millions of fractals, it has left my soul feeling burnt-out.

Neurodivergent Rest is Different

Autistic and neurodivergent rest is different from neurotypical rest. The recommended recovery strategies for the majority of neurotypical people who are in burnout (and often also experiencing depression) are to try to engage more with others, to try and do more exercise, have a better diet, to try and join in more with the group activities and to generally be more active and engaged in society. This doesn’t work if you are autistic. Such strategies have left me with less capacity and a feeling that I am falling deeper and deeper into a void and becoming even more disembodied and disconnected, it has left me with even less energy to function and get through life.

Autistic ways of recovering typically involve giving yourself time and space to be yourself, to stim more, to engage in your monotropic interests, and to create more flexibility in your life so you can embrace your own autistic way of communicating and socialising rather than trying to ‘fit in’ to others’ expectations. Research led by neurodivergent teams is especially valuable in exploring ways to support those experiencing burnout. Research led by people who are also autistic or otherwise neurodivergent adds to the narrative of recognising and validating the inner experience of autistic people.

If you are experiencing burnout, a deeper understanding of autism and learning to embrace your own authentic autistic identity can provide ways to help give your body and mind authentic and meaningful ways to rest, recharge and recover. Learning more about theories such as monotropism (Murray, 2005), discovering more about the sensory system and how an understanding of the interoception system works is vital and can help enormously; it can bring a much-needed sense of meaning to life.

Research demonstrates how a better understanding of autistic identity can support wellbeing. It can help the healing journey for those in burnout and provide ways to help prevent cycles of burnout. It is valuable research, but it is not enough. If your soul feels burnt out, it will need more than this.

Burnout and Souls

I have realised what is missing from all the literature I have read about autistic burnout is how burnout affects our soul.

What do you do when your soul feels burnt out, broken into a thousand fractals, heavy and exhausted?

How can we help our souls recover from living in a prolonged state of persistent burnout?

I am describing the type of burnout and life circumstances where you can’t ever get the solitude you know you need and that you crave so you can heal. I am talking about the type of burnout and life circumstances where you don’t have the freedom to be yourself, unmask, stim, and embrace your monotropic interests for extended periods of time that you know you really need.

What do you do when you have family, work, other health difficulties and commitments that impact you?

What do you do when you can’t always get the prolonged flowy time that you know your body, mind, and soul need to really rest and recover?

Autistic Collaboration

The recent research carried out by Jorn Bettin and the Autistic Collaboration team shares devastating statistics of the inner experiences of autistic and marginalised people trying to survive in the world today:

Our individually unique nervous systems and sensitivities develop and evolve over the course of our lives. 85% of neurodivergent adults often or always feel overwhelmed and misunderstood, and over 60% often or always feel disrespected and unsafe. Our overall sense of wellbeing is determined by alignment between our sensitivity profiles and the ecology of care we are embedded in (or not).

For the experience in workplace environments, our global survey results show that non-marginalised employees experience the culture in typical workplace settings as “normal”. In contrast, employees from marginalised population segments feel much less safe and welcome at work.

Over 40% of employees are often or always afraid to be their authentic self when interacting with “superiors”, and over 25% of employees are often or always afraid to be their authentic self when interacting with peers.

Amongst employees who identify as neurodivergent, 70% are often or always afraid to be their authentic self when interacting with “superiors”, and over 40% are often or always afraid to be their authentic self when interacting with peers.

The experience of being at the receiving end of internalised ableism starts at a young age in powered-up family structures and education environments.

Amongst neurodivergent children, 90% are often or always afraid to be their authentic self at school, and close to 70% are often or always afraid to be their authentic self within their families. Furthermore, over 90% of neurodivergent children often or always feel overwhelmed and misunderstood, over 80% often or always feel disrespected, and over 70% often or always feel unsafe.

(Jorn Bettin, Autistic Collaboration, August 2024)

Burnout Recovery for the Soul

It is not always easy or even practical for many people to completely ‘opt out’ of what Bettin describes as the hypernormative and traumatising life path of “modern civilisation”. Feeling trapped can make life even more difficult, suffocating and isolating, it can feel like there will never be a way out from a full burnout. It can feel scary to think you will always be living in survival mode.

There are many people living in this situation, we have to try and hope so we can keep moving onwards. There may never be an opportunity for the deep, extended rest we know we need, and there may never be enough safe spaces to unmask and truly be our authentic selves, so we have to find other ways to somehow carry on, we have to look for the little glimmers in life, reconnect with nature find comfort in the elements around us in whatever ways we can, in whatever small moments of time we can capture between everything else life throws at us.

Connecting with others who share similar experiences is one way of validating the depth of this type of burnout. The autistic, disabled and neurodivergent community provides connections that offer a healthy ecology of care through shared lived experiences with others who ‘get it’ this is invaluable. The disabled and neurodivergent community is more than a community of activists; it provides a lifeline for those who are living in perpetual survival mode and offers solidarity, empathy and a feeling of belonging. The neurodivergent community offer a safe space where the DEEP double empathy problem is dissolved and where love and friendship can flourish.

As Bettin (2024) summarises:

Recognising that cognitive and emotional limits are just as real, immutable, and relevant for our survival as the laws of physics may allow us to embark on a path of intersectional solidarity and healing on the margins of society.

It is only within nurturing, small ecologies of care beyond the human, that we can (re)discover our faith in humanity, and our faith in the healing powers of the big cycle of life, which is far beyond human comprehensibility.

Reconnecting with nature and taking little moments to recognise the glimmers of joy in life, even when it is REALLY hard, can provide nourishment in small ways to help keep you going from moment to moment. Connecting with others and trying to find ways to explore the expansion of our bodyminds may help some people (neuroqueering / neuro-holographic ways of being) may provide some breathing room and give hope. Carrying on in survival mode for so long is not sustainable. We have to find other ways to keep moving and nourish our souls before the bodymind can even begin to heal. We need love and friendship, radical acceptance and inclusion, and deep empathy to restore our souls.

References

Bettin, J. (2024, August 4). Neurodivergent nervous systems and sensitivity profiles. Autistic Collaboration. https://autcollab.org/2024/08/04/neurodivergent-nervous-systems-and-sensitivity-profiles

Edgar, H. (2024, June 15). The Double Empathy Problem is DEEP — MoreRealms — Medium. Medium. https://medium.com/@helenrealms/the-double-empathy-problem-is-deep-2364b3412c39

Milton, D. E. (2012). On the ontological status of autism: the ‘double empathy problem.’ Disability & Society, 27(6), 883–887. https://doi.org/10.1080/09687599.2012.710008

Murray, D., Lesser, M., & Lawson, W. (2005b). Attention, monotropism and the diagnostic criteria for autism. Autism, 9(2), 139–156. https://doi.org/10.1177/1362361305051398

Rose, K. (2018, May 21). An autistic burnout. The Autistic Advocate. https://theautisticadvocate.com/an-autistic-burnout/