The deep and lonely woods of autistic burnout
In May of 2023 I was invited to contribute to The Autistic Advantage Podcast and my episode has just been released. It’s September 2023 as I type.
When I was sent the final edit I ventured to my local woods which is my usual podcast stomping ground. As I walked and listened I was struck by the clarity and self-assuredness with which I spoke…the hope and lightness in my voice. I spoke of having been in autistic burnout for over a year at that point and feeling like I was coming out the other side. I talked optimistically about the toolkit I’ve developed to nourish myself and help break the burnout cycle, now and in the future. I think I spoke eloquently and articulately about these things and I should be proud, but instead I feel…uncomfortable, so I’m hoping to unpack this discomfort here.
As I listened back to my conversation with Olivia, I tried to put myself in the shoes of the people I imagined might also listen — friends, family, colleagues. And it struck me that, if everything I said and how I said it was taken at face value, once again the chasm between me and others would grow. This is a chasm that already feels sizeable. One which I’m constantly trying to contain and draw the boundaries closer, until one day the void can be bridged. This chasm speaks to the difference between how others perceive me and the rich complexity of my invisible inner world. This difference echoes, reverberates and seems to grow in size daily. Everyone somehow becomes more distant despite the significant efforts I undertake to explain, be vulnerable and patient. Ironically here I am again using words to try to explain myself, but this is a selfish piece of writing at the heart of it.
I am writing for myself so I can hold a mirror up to the uncomfortable complexity I live and breathe…that I can appear so composed while slowly breaking apart into a million unrecognisable pieces.
In writing this I am also beginning to understand that my efforts to explain myself seem to feed my own deeply held beliefs around being at odds with myself…being a contradiction in terms of how I ‘act’ versus how ‘feel’. I am opposed to my way of being in the world, which often feels so inconsistent. Trying to resolve this contradiction is exhausting and doesn’t seem to serve me or foster a greater sense of understanding in others. But what if contradiction is the wrong word after all? What if my experience can be better described through the lens of duality.
From this perspective, my ability to function in a way that is expected of, and indeed has often served me, is a continuum of the depth of disconnect and despair I experience daily. I am considered ‘high-functioning’ because this duality is my greatest gift…but also the cause of much of my simultaneous inner turmoil. Perhaps if more people could compassionately wrap their heads around this notion of duality it could be the basis of greater understanding across neuro-types.
So, I show up today in these words as potentially thoughtful and articulate yet contrastingly and symbiotically also as someone who is still very much lost in the woods of their own mind.
The ups, downs, ins and outs of autistic burnout
I discuss burnout in the podcast, but not in a way that I find particularly useful when listening back. Obviously this was not the focus of the conversation, but it feels like burnout is one of the most painful, yet misunderstood, aspects of being autistic. It requires greater depth of consideration, so here’s what it looks like for me in practice.
My burnouts manifest in a significant loss of function, regular episodes of situational mutism, notable struggles connecting and communicating with others, chronic pain and the inability to tolerate most sensory stimuli from lights to sound, smell and touch. All of these are standard aspects of my autism, but in burnout the loss of function is greater, the mutism more frequent, social interactions more fraught, the pain more intense and the sensory intolerance significantly heightened. It is an isolating and exhausting experience. As autistic burnout is not well researched or understood this also means, much like the word ‘autism’, you can’t use it casually in conversation and expect people to have an increased understanding and/or appreciation of what you’re going through. It means nothing to some people, or something it’s not, to others.
In autistic burnout, a bad day for me is waking up with an impending sense of doom, a cloud of dread hanging over me but not being able to put my finger on why everything seems so wrong. But also not being able to fully identify how completely awful I feel because I struggle with alexithymia so carry on, business as usual. I maintain the same expectation that I should meet neurotypical standards without taking into account that, not only am I not neurotypical, but that today is one of those days where the focus should be on just getting through. I push, I bully, I berate, I nag myself. I convince myself I have no choice but to succeed, only to later experience the fallout from this bullying when I lose the ability to speak or can’t parent because even basic tasks feel complex and insurmountable. So the rest of the day, or even week, is a write-off because I’ve already over-extended myself by failing to recalibrate my plans to account for this doom and dread that so frequently settles in my brain.
A bad day is feeling like I can’t walk. Each foot weighed down with lead and tethered to the ground by an elastic cord without much slack. My gait changes, my feet drag and I stumble frequently. Everything takes longer to do. I become uncoordinated and bash into pieces of furniture that, on a good day, my body intuitively knows are there. I drop things, breaking glasses into shards that I then spend ten minutes cleaning up, but my muddled mind can’t quite make sense of the safest way to do this. I grab some tissues and only then realise I’ve walked through the glass to reach them. Anyway, the dust pan and brush right next to me would probably have been a more appropriate choice. Afterwards I can’t remember what I was doing before the glass broke so I forget that I haven’t eaten lunch and go back to work hungry, but without realising because interoception difficulties mean I can’t read those internal bodily sensations so easily. I struggle through for another few hours only to eventually tune into how awful I feel and realise I forgot to eat.
A bad day is that prickling, burning sensation that starts behind my eyes before subtly extending to my whole scalp, when exposed to lights. I’d like to say ‘bright’ lights, or maybe just fluorescent ones, as so many other autistic people report. But for me, it’s just lights. Plain and simple most types of artificial lighting causes me pain. Sometimes even sunlight. My partner is convinced he’s damaging his eyes living in the very low-level light of our flat, but it’s about all I can handle. And then as the prickling sensation settles into a sensory headache that will accompany me for days, I notice that I jump at the sound of a neighbour’s door banging in the distance. But it’s not a physical jump, it’s like an internal jolt that no one else can see. This is what unexpected sounds do to me, they are felt on a bodily level at the very centre of my chest and reverberate out, long after the sound has ended. This is unsettling and distracting, as if part of my nervous system is always on high alert to any imagined dangers that unexpected sounds might indicate. And then there’s the gentle affectionate caresses from my partner, or the more forceful assertion of our four years old’s physicality in my personal space. One soft, one intense, both unexpected and unsolicited. They make me freeze, go rigid. As if by not moving I might become invisible and the input will stop. Or worse, I flinch as if trying to escape the love and affection intended by these touches. I feel like a monster to be so repelled, on a physical level, by such tenderness and expressions of love.
A bad day is knowing I need half a day to read and respond to a message from a friend because it takes so much energy for me to do so, energy that is never readily available. So I leave the message unopened but work on building up the motivation and momentum to engage. I prep myself to switch into ‘normal mode’, talking about the humdrum, day-to-day stuff even though this all feels so absurd when my mind is consumed with rebuilding my understanding of who I am and all my life’s experiences, aspirations and assumptions. But it’s ok because I’ve already seen the first line of the message flash up on my phone, so I know what I’m dealing with and can craft an ‘appropriate’ reply. Only, when I finally open it, the message goes in a direction I hadn’t prepared for, so I spiral and panic, script and re-script new responses in my mind until I lose either energy or motivation and decide I need to reply later. The message I eventually type, hours, days or even weeks later, has been through several imagined and real drafts. And when the sweet release of pressing ‘send’ hits, only then do I realise I’ve just started the whole exhausting process off all over again. Sometimes it’s easier to just not open messages at all. I can only imagine how frustrating it is to be on the receiving end of my unpredictable and disjointed communication, but the full weight of how I struggle to communicate bears down on me oppressively in burnout and even positive interactions carry a high cost in terms of energy outlay.
I could go on, because honestly there are more bad days than good ones at the moment. I could talk about how I rarely leave the flat except for activities linked to parenting, or how much dread and anxiety I have when engaging in activities that other people do without thinking. I could talk about how awkward it’s become to respond to the question ‘how was your weekend?’ because there’s nothing much to report beyond describing the multitude of ways I tried to recover from the working week, or the fact I almost never venture beyond an invisible one-mile radius comfort zone I’ve unknowingly drawn for myself over the past 18-months. Plus, I’m new to realising when someone asks ‘how was your weekend?’ they’re not necessarily that interested in your reply, and certainly not the detailed and honest kind of response I’ve always assumed was required. Who knew?
In short, burnout for me is about simply surviving and getting through each day, one day at a time.
An evolving toolkit
For all the reasons above, and the multitude of other ways in which autistic burnout negatively impacts my quality of life, I’m keenly motivated to move past this painful period. Which brings me to what I referred to in conversation with Olivia as a ‘toolbox’ of things I’ve identified that support and nourish me. Again, this was a passing reference but, if I was coming to the podcast as an autistic listener, I would have been left frustrated that I didn’t get an insight to what tools I was referring to.
Besides, developing this toolkit has taken a lot of trial, error and expense over the past year. If sharing the details here can help shortcut anyone to something that makes a positive difference for them, then this is important and needs to be shared. So here’s a list of things in my toolkit, why I use them and when. Eventually I might write this up in more detail, but if you want to know any specifics, such as where I do my online yoga classes, just reach out.
Nature
What: a brisk walk in the woodland near our flat, following the exact same route where possible
Why: I call the woods my medicine because they never fail to lift my mood in a largely unspecified and intangible way
When: ideally, daily and preferably in morning because the early injection of natural light seems to help
Flow State
What: Online word searches allow me to lean into my love of words and pattern spotting and online jigsaws with hundreds of piece are also a favourite
Why: These activities allow me to achieving ‘flow state’, or be ‘in the zone’. It’s like my brain is being gently hugged or rocked into a state of mental calm
When: Daily when I’m starting to feel overwhelmed or dysregulated, some only take me 2mins, some 20mins
Meditation
What: I’m a long-time meditator and have tried lots of different types but always return to the one I was first taught — Buddhist meditation, specifically the Mindfulness of Breathing and the Metta Bhavana
Why: I don’t know why meditation works but it allows my brain to slow down and become better at observing my thoughts — not in the moment of meditation, but in all the moments in between. Overall I become less reactive when meditating regularly and less caught up in my feelings
When: 25mins, ideally every day but at least five times a week seems to maintain me on somewhat of an even keel
Physical Input
What: I have just recently discovered weighted blankets and acupressure mats and now can’t live without a daily dose of both. I also finish each shower with a blast of cold water.
Why: My weighted blanket reminds me of the edges of my body. This is important for me because I often feel so raw and permeable I forget where I end and where the world begins. But being gently held by a weighted blanket draws my attention to the boundaries of my body. On the other had the acupressure mat provides a measured level of discomfort that cuts through unwieldy chronic pain and the fuzzines of sensory overload. Similarly cold water penetrates my mental fog and dissipates any sensory overwhelm
When: Daily, for about 25 mins under a weighted blanket and/or on the acupressure mat. I often combine both things for maximum effect, alongside a Buddhist meditaion. In terms of ice-cold water, I can only handle about 30 seconds each morning, but this is enough for me and has the desired effect
Exercise
What: Short online yoga and pilates classes
Why: The key for me here is the opportunity to synchronise my breath with movement and also the opportunity to feel my heart beating, something apparently lots of other autistic people also can’t do at will. Short classes are better in terms of energy and convenience, and online classes support me to turn my attention inward, rather than performing as I often feel compelled to do at in-person sessions
When: A couple of 30-minute classes a week, when possible
Music
What: Either binaural beat tracks for concentration or trawling Spotify for the songs that used to light a fire under me in my late teens and twenties
Why: The rhythm of binaural beats really helps me to focus especially when working. I also have what I think is a form of echolalia which connects my thoughts and feelings with song lyrics subconsciously. So while I consciously struggle to identify how I’m feeling I might suddenly become aware that I’ve been repeating a lyric from a long-forgotten song all day. When I stop to analyse the lyric and listen to the song it helps me to unpack what it is I’m feeling
When: Such an easy thing to do, to put on some music, but I only manage to remember this a few times a week when it probably should be an activity I undertake daily
Stimming
What: short for self-stimulatory behaviour, I feel somewhat under-qualified to describe this as I’ve struggle to identify how I self-soothe in this way. I’m starting to notice that, when I allow myself, I like to fiddle with small, functional objects like paper clips and safety pins or rock and bounce my leg simultaneously in a rhythmic pattern. But I think visual stims are the biggest ones for me, so certain colour combinations set my mind at ease, an example being our pink sitting room, red hallway and orange kitchen. Each room can be seen from one to the next, creating a soothing (to me) colour-way
Why: Visual stims, provide a sense of calm, order and logic to me and make me feel safe and reassured. Physical stims are my body’s way of working out an intense feeling. So energy builds internally around something like anxiety or excitement and this energy is then dissipated positively through movement
When: Without a doubt this visible expression of my autism is the one I feel most vulnerable and self-conscious about, so I mask heavily in this area and don’t physically stim anywhere near as much as would be helpful. One of the joys of not leaving my flat much though, is having the gentle reassurance of my visual stims around me most of the time
Breathwork
What: I do a breathing exercise that is designed to stimulate the vagus nerve which is linked to fight, flight, freeze, fawn, flood, fatigue trauma responses. I breathe in to a count of four, pause for a count of two, breath out for a count of eight and pause for a count of two
Why: This pattern of intentional breathing forces me to focus on the present moment and the longer exhalation encourages my heart rate to slow
When: I do this for ten minutes every morning
While all of the above might read as an indulgent self-care list to the casual observer, for me these are non-negotiable survival strategies. I need to undertake at least about four or five of these every day to keep my head above water and the worst of my stress, pain and anxiety at bay. And yes, that means I have to dedicate a huge amount of time to what I consider ‘autistic maintenance’. It might sound almost luxurious but there are many days I curse the need to separate myself out and regulate myself so consistently. This also speaks to the difficulty of the ‘how was your weekend?’ question when, in between parenting, most of my time is spent doing a combination of the above. Time spent doing these things also adds to the growing chasm between me and others. Forget energy, there simply aren’t enough hours in the day to attend to all of these things as well as connecting with others. My main focus has to be on keeping myself afloat, while hoping that there might be some good folk still waiting for me on the other side of this burnout.
Deep in the woods
While the list above represents a great distance travelled in terms of managing the symptoms of burnout and nourishing myself, I’m not out of the darkness yet. And that’s the thing about burnout, combined with a late diagnosis and limited options in terms of reducing responsibilities — the trajectory is not unidirectional. In fact much like my autistic profile of abilities, it’s been quite spiky. There have been many ups and downs, moments of being propelled forward by deeper understanding and then immediately dragged backwards by the sheer weight of relearning and reframing everything I’ve ever known.
However, lately I keep coming back to something a wonderful friend said to me as we walked around the woods weaved throughout this piece. She observed that, given how severely restricted I am in terms of where I can go and what I can do, I’m not travelling far physically. But her impression was that the distance I’m travelling in my mind, the new ground I’m covering and the maps I’m reimaging for my future self, is vast.
In the spirit of hope, which I somehow manage to maintain, I am carrying this idea with me.
I am travelling far and wide through this burnt and lonely land even when, for now, all I can do is trace and retrace the same path in the rich and ancient woods that are part of my daily medicine.
When it’s put to me like that I know that some day I will clearly see the woodland of this painful period, and its’ trees.
The deep and lonely woods of autistic burnout © 2023 by Hannah Breslin is licensed under CC BY-SA 4.0
