What is autistic burnout?
My first memory of autistic burnout was when I was around 11. But being undiagnosed, it is only in hindsight that I am calling it that. At the time, it was a mystery to me and the adults around me, but I was fortunate to have an attuned mother who let me rest and didn’t push me to return to school until I was ready. Autistic burnout is not a sign of weakness; it’s a natural response to the challenges of living in a society that may not always accommodate neurodivergent needs. Especially if you don’t know you have them. Sensory overload, social demands, and the pressure to conform can contribute to a state of exhaustion that goes beyond typical stress. The way that autistic burnout is described is often from an outside perspective. Literature about burnout is typically written by neurotypicals who describe it like someone is just taking a few days off to catch up on some rest and have a little break. The reality of what autistic burnout feels like though, is anything but restful.
Experiencing autistic burnout
How did we get here?
Autistic burnout is the result of accumulated stress that hasn’t been processed. It’s your body forcing you to reset because it simply can’t take on any more stress. But, it’s a little like cleaning the house. The ideal is to tidy as you go, rather than let the mess get so bad that it’s easier to set your house on fire than deal with the accumulated mess. Ideally, we need to process our inputs as we go, like doing regular chores and maintenance to keep our homes manageable rather than rebuild out of the ashes time and time again.
Neurotypical people can also experience burnout. The stresses and strains of modern life lead many people to have nervous breakdowns. It’s just that the window of tolerance is a lot narrower and the speed of the build up to toxic levels of stress is a lot faster for neurodivergent people. Neurodivergent people have the volume turned up on their perceptions of the world, so the stress of sensory inputs accumulates more quickly. For a neurotypical brain, a party might be quite exciting and they might find they need a little bit of ‘winding down’ afterwards but more than likely they will wake up the next day feeling mostly themselves. For me, the sensory accumulation and processing of that party will take about a week to process. It’s a bit like a sensory hangover. Now that I understand this, I can plan for this by making sure that days after big events are as restful as possible (as restful as it can be with children). But my drive, ambition, and desire to create the family life that society suggests I ‘should’ still often gets the better of me and I find myself taking on too much only to crash in a heap.
Self-parenting instead of self-care
Much of the advice on avoiding and attending to autistic burnout revolves around self-care. We are told to begin the recovery process by practising self-compassion, but what does that even mean? For me, taking time to research and understand that autistic burnout is a natural response to external pressures and doesn’t reflect personal failure has been a useful first step to help challenge my natural tendency to judge myself for needing to retreat. Similarly, by being able to understand that when my children can’t do something, it is not because they are being ‘defiant’ they actually just can’t do it, I am able to reserve the urge to push them too hard and add to their burnout.
Learning to be kind to yourself and acknowledge that you have reached your limits is not always an easy thing to do when you live in a society that praises ‘hustle culture’. I find that the only real way I can extend true space and compassion for myself is to imagine that I am parenting one of my daughters. I find ‘self-care’ is such a loaded phrase that I just can’t relate to it, but something more like ‘self-parenting’ is easier for me to picture. I try to imagine that I am caring for myself as I would one of my children. I make myself food that is as nourishing as I can tolerate without judgement if all I can manage is toast. I try to compensate for my pain with pleasant sensations such as lying on a memory foam mat on the ground and let my feet bang up and down while listening to podcasts in the dark with the air conditioner on all night long, but most of all, when the internal voice of judgement rises within me, I try to reply to it as I would my daughters, with ‘You are enough, you deserve rest, you deserve to attend to your needs.’
New Year’s resolutions include fostering open communication, creating rhythm and structure, seeking support, avoiding the ‘Instagram-worthy’ trap, and embracing imperfections for happy neurodivergent families.
Neurotypical boundary building
Self-parenting is also a more useful way for me to think about how I can plan to avoid future burnouts. I need to parent myself by learning when to say ‘no’. Many autistics find establishing boundaries difficult despite our reputation for rigidity. What is often mistaken for rigidity is actually a hyper-aware understanding of all the perspectives in a situation and an inability to prioritise ourselves because we don’t actually know where we end and the world begins. Our ‘oversensitivity to change’ is described as rigidity because it is described from the outside, usually by neurotypical onlookers, like tourists viewing the sudden collapse of a cliff into the sea.
The internal experience of autism can be like ‘being the cliff’ slowly eroded by the ocean. Our neurodiverse nervous systems are made of something as impressionable as sandstone, so defining where we end and the ocean begins as the waves crash up against us is often hard to do. Our senses are open and exposed, the world doesn’t just brush up against us but it permeates us and wears us away. as the waves erode the cliff gently and slowly until we get to a point where a final wave sets in motion a complete collapse and everyone around us says ‘Wow, that was an overreaction!’ What a rigid response to a tiny little demand or change.
A neurotypical experience is more like a concrete retaining wall erected to defend the coastline from tsunamis. They have solid edges and know where their boundaries are and they never mistake themselves for the ocean. So when the waves meet them, they crash up against them, and the retaining wall is left mostly unaltered. It takes a literal tsunami to break their boundaries and even then, they remain mostly intact or at least recognisable.
As we live in a world that is created for neurotypical people by neurotypical people, the only defence that we have is to try and create a few concrete boundaries of our own to protect us somewhat from the waves. This is hard to do, and in an ideal society, we would ask for everyone to make changes and adjustments that allow the sea to calm, so it doesn’t whack so hard against the shore. This ideal would improve life for everyone, neurotypical and neurodivergent alike, but ideals sadly don’t stop our erosion. So instead, when we are not in autistic burnout, we need to figure out how we can create some breaks to shield ourselves from the constant erosion so that we might avoid complete collapse.
Neurotypical advice says to ‘clearly define and communicate your boundaries to family members and colleagues. This may involve setting aside specific times for rest and self-care, even if it means saying no to certain social or work-related commitments’. Althought this sounds easy, the reality is that as ND’s we might require practising and scripting ways to say no to things, or to work on learning how to ask for more information and reserve answering until a later time when we can more calmly figure out if we are really up to the demand before committing to things. If you are a neurotypical parent to a neurodivergent child, you can be the cement retaining wall that protects their sandstone cliff by actively considering your child’s schedule and making sure they have opportunities for calm and rest after demanding experiences.
The key is understanding what ‘demanding’ means for your (or your child’s) sensory system. For some, it might be a social event. For others this might be a day at school or brushing their teeth. Still more confusing is that for the same person on different days, their tolerance might change. Some days I can do a lot, other days brushing my teeth is hard. Figuring out how to only do ten things on the day I feel capable of doing fifteen so that I have something left in the tank to brush my teeth the following day is something I, as a late identified autistic, am still figuring out. I am hopeful though, that because my children have had their brains explained to them from a young age, they will be better at believing their own experiences and adjusting to accommodate them than I am.
Managing family and home life to avoid autistic burnout for us requires some conscious effort and planning, but I have developed some general guidelines for creating a family system to try and support us all to avoid autistic burnout as best as possible. Below are my suggestions for New Year’s resolutions that I think are actually worth making in order to try and reduce the autistic burnout and erosion of your ND loved ones (and yes, that includes yourself). No more New Year’s resolutions to finally get the perfect body, perfect job or perfect family, but rather resolutions for happy neurodivergent families:
1. Resolve to listen to yourself and your children (both your verbal and non-verbal communication): Foster open communication within your family. Use neuro affirming words and discuss the way your brain and other people’s brains work, openly and honestly, using the correct words. Educate your children about neurodiversity and explain the challenges and strengths that your nervous system may face in the same way that we talk about bodies and how to take care of them in age-appropriate ways. Encourage empathy and understanding to create a supportive environment where you all try to work as a team to support one another. Remember this will be a long-term goal, but by talking about your own nervous system needs you are also helping your kids learn about theirs.
2. Resolve to create rhythm and structure: Establishing a predictable rhythmic flow to life can provide a sense of stability. This benefits both you and your family by reducing uncertainty and creating a more manageable daily life. It reduces your cognitive load by helping you to know what is next and reduces stress by helping neurodivergent kids feel calm.
3. Resolve to utilise support systems: Seek support from friends, family, allied health, community groups, anywhere you can get it. The idea that anyone is ‘independent’ is a lie. In fact we are a codependent herd animal. Connecting with others who share similar experiences can provide emotional support and valuable insights. The adage that ‘it takes a village’ is true, but we aren’t just given the village, usually we have to actively find it or build it ourselves.
4. Resolve to avoid the ‘Instagram-worthy’ life trap: Probably the most important way to avoid burnout is to avoid focusing on a life that ticks all the boxes and looks good from the outside but feels horrible on a sensory level. Embracing our imperfections and consciously stating our values and discussing them as a family on a regular basis helps to remind us that a perfect life, as depicted on social media, is often an illusion. Focusing on what works best for your family, even if it doesn’t conform to societal expectations allows you to prioritise authenticity.
5. Resolve to allow yourself to shift your focus from external validation to internal satisfaction: Authenticity brings genuine joy and fulfilment. Sharing real moments, even the messy, chaotic and tricky ones can lead to some of the best belly laughs that are a true expression of authentic joy. Celebrating the uniqueness of your family, your brains and your love will make the approval of ‘likes’ feel less relevant.
6. Resolve to allow yourself to be perfectly imperfect, just as you are: Meet your life with acceptance and get rid of the constant striving to be perfect. Instead, resolve to stop and love what you already have. Protect it fiercely from the constant erosion of the neurotypical world by creating as much space as is possible. In that space, beautiful things will bloom.
It’s unlikely that our world will ever be so accommodating that neurodivergent people stop experiencing autistic burnout altogether. But by bringing some conscious awareness and supportive boundaries to our family life, aiming for simplicity and true nurturing, we can hopefully avoid the worst bouts of burnout. Here’s to a New Year filled with all the spaciousness you can muster for you and your beautiful family.
4 JANUARY 2024
WRITTEN BY HOLLY KARTEN
ND PARENT | EDUCATOR