Monotropic Life Design & 11am starts

The five insights that change everything

UPDATED WITH AUDIO! You can listen to the Wild of Brain Substack on a walk or commuting now.

Reflecting on life to celebrate what’s working and what’s not, is wise for all humans but for neurodivergent folks, it’s a matter of survival. That may sound dramatic. This is intentional, because the mind-body collapse of autistic / neurodivergent burnout can be debilitating, requiring dramatic changes and significant support.

I’m someone who is easily overwhelmed. Having a clear view over the weeks and months ahead is simple self respect, an easy accommodation to offer my future self. Life mapping wasn’t enough to stop me hurtling into a flaming pile of regurgitated burnout though. 

I was missing some vital insights. Five of them.

In addition to prioritising care for my hyperconnected nervous system, these are the standout insights on what sends me into burnout, and are key to structuring a life that doesn’t throw me BACK into Burnoutsville:

1. Learning about Monotropism and adjusting life to be more monotropic-friendly. 

2. Lack of joy or things/activities that bring comfort or light me up are as much a cause of burnout as accumulative sensory load and ‘doing too much’. 

3. Exploring different kinds of rest and actively working out what I need. 

4. Understanding the health-driven aspects of my fatigue, weird-ass dysautonomia heart rate shenanigans and the source of chronic pain.

5. Factoring in cPTSD and learning what that means for me.

(I’m not going into all the other common causes of burnout or other burnout info BUT, you can read the four-part series I wrote on neurodivergent burnout. The series starts HERE. I guess you could consider this piece a sort of follow up)

The idea is to live in a state of wellbeing right? For me, this means being able to do all the things that the human body and capitalism requires, parent adequately and do the work I love sustainably BUT I’d been stymied, stuck spinning my wheels in my recovery from severe burnout. Supporting professionals thought maybe I’d done so much damage cycling from burnout to burnout and had such a great trauma load that ‘this’ (you’ll have to imagine my hands flying about to indicate the weighted blankets, empty calendar, blood pressure monitor, electrolyte mix and other paraphernalia of the chronically ill) might be as recovered as I get. I was not happy with this prospect. 

We know that, on the other side of burnout, or whatever ‘recovered’ looks like for each of us, returning to the same life will lead to the same outcome: burnout. And it’s looking very much like repeat burnout and debilitating bouts of severe autistic burnout can risk that we won’t recover ‘back’ to previous abilities. This is my fear.

So, after stomping around mad awhile, I got to thinking.

I reflected on all I’d learnt about what sends me into burnout. Thinking back on the previous weeks, I saw that the limited capacity of my days had been spent surviving. Granted, I’ve had a crap tonne of appointments and disability-related bureaucracy to wade through but I’d just been staggering through and if I’m honest, counting the hours until I could sleep again. This was internalised ableism. It’s amazing how insidious ingrained societal voices can be. Realising I’d never get through the yuck and meh stuff to the juicy, and reasoning that this sad state of affairs was what had me spinning in burnout recovery circles, I set about making some changes. 

First off, I gave myself permission to sleep whenever I needed to. If you hang out with any PTSD therapist or coach or educator on the Great Tok or other socials (like the fabulous Nate Postlethwait, who recently announced a neurodivergent diagnosis, hoorah, he is one of us lol!), then you’ll know ‘the wanting to sleep for days and weeks and maybe even months thing,’ is widely acknowledged in trauma healing. 

Secondly, with my five revelations in mind, I’ve been trialing different ways to accommodate my monotropic needs and structuring in creative play and rest. 

Learning about monotropism gave me a language to describe an essential aspect of my inner experience.

My nervous system gets rattled when I am jumped out of monotropic flow, don’t have enough monotropic time in any given time period or feel like my attention is being scattered. It’s hard to describe, but I can literally feel the sensation physically in my mind. It’s a kind of panic of thoughts. One of my least comfortable states. 

We all know that we have more resilience and ability to adjust to changes like these when we’re within coo-ee of our Baseline of Wellbeing. You know the autistic trait of a person having a hard time or having a meltdown around sudden change of plans? Some of us struggle with unexpected changes at the best of times. This relates to monotropism too. If you’re new to Monotropism, it’s a theory developed by Dinah Murray and Wenn Lawson. I will often use this graphic by Autistic Realms as an explainer:

This is partly why I never have my phone sound on. I resent the intrusion of a phone call. I see them as demands that splinter whatever monotropic flow I have going on. That’s a clear nope from me!

Chunking the week means I’m playing with allocating themes to each days. This structures in time to sink into uninterrupted hyperfocus mode aka my happy place.

Monday is life admin and finances. All the stuff I do not like. Then they’re done for the week. Unless urgent, any bureaucracy or administrative hard stuff gets put in the Monday folder/on the Monday list. 

Yuck appointments get made for Mondays too. I’m corralling those suckers into one day. By Monday night, I’m done and dusted for the week. Hopefully.

Tuesday and Wednesday is Wild of Brain - facebook, Substack, education and advocacy work.

Thursdays are health appointments // research and design. 

Fridays are writing days. 

I hit pause between each ‘thing,’ task or activity by retreating to the sanctuary of my room and reading, listening to music, resting. Sometimes I need ten minutes, mostly I set an alarm for half an hour. This gives me a built-in time to check in with myself and tweak the rest of the day if I need to. Previously I would just plod on through. To my detriment. 

I’ve returned to the 11am starts. I don’t pick up my to-do list or diary or workbook until then. Unless I want to. I know autistic women with super high powered jobs who do this. They sleep, read, watch shows, go for walks, surf, do yoga, run, drink cups of tea in a hammock, whatever they need, and then get dressed and ready to sit down to work at 11am. 

One Autistic ADHDer swears she gets more done in her 11-5 days than if she works the expected 8-5. 

One crosses off a day on her calendar at strategic times each month - this is for her to do whatever she loves. 

Another has established that, to sustainably hold employment she needs the 11am start AND a three day weekend. All power to her.

One only takes contract work and makes sure she has two week minimum rest punctuating her work year between contracts. 

All four of the women I’m thinking about work mostly from home.

And all of them swear this 11am start practice is the main thing stopping them from the insidious slide into autistic / neurodivergent burnout. 

They all factor in their unique neuroblend traits to create what works.

I may still only get a few hours of focus a day (and none on others), but it’s been a huge relief these past few chunked weeks to have clarity on what I’m focussing on each day. I’m seeing the benefits. I’ve noticed an increase of cognitive radness and an uplift in general wellbeing now that I allow myself chunks of time to let my monotropic self do what I was born to do, deep dive and hyper focus myself into a delicious flow state.

But y’all, positive strides ahead aside, being Autistic and ADHD with a dash of the ole PDA is a TRIP. What I consider the autistic parts of me wants gentle rhythms and calm predictability, my PDA parts run screaming at the slightest whiff of a demand, and my ADHD mind squirrels are all ideas, innovation, insight, go go go, do all the things right NOW.

Sigh. 

I think part of why the ‘chunking’ monotropic life design is working so well is that there are many tasks I can do within the theme for each day so I don’t feel restricted. The practice of chunking is broad enough to work for PDA, has enough structure for the ‘tism, and enough novelty for ADHD. 

It’s early days, I will reflect and tweak as I go but so far, the monotropic chunking of my week, the 11am trick and punctuating the day with rest and joy, among other things, is helping. I have had to acknowledge something super uncomfortable though. There is something in me that denies myself pleasure. It’s disturbing to write that, but it’s true. Without built-in checks or trusted people to remind me, I kept reverting to slogging through the days. I see this in my coaching clients too. It’s like neurodivergent folks, especially late diagnosed women, trans and non-binary folks, feel like we have to prove ourselves more than the average bear, or don’t feel worthy of joy or we push off the joyous until we finish our to-do lists. Which, by the way, are never ending. Our lives are not. 

I remember one of the last conversations I had with my friend Sienna before she died, young and beautiful, leaving a tribe of folks bereft and a whole life left to live with her babies. She told me to eat the cake. 

In the context of that bashed out volley of messenger DM’s what she meant was - do the things, seize the day, hug your loved ones, take life, squeeze all the juice out of it and allow yourself to be greedy for more.

Eat. The. Damn. Cake. 

In recent weeks I haven’t even been thinking about cake, let alone eating it.

I’ve followed a friend’s lead and crossed out an entire day in my calendar for me to do whatever I like. It felt like a subversive act. I can’t afford the road trips and hot pool excursions I’m aching for, but just putting that big cross on that calendar day with the intention that it’s a demand-free day felt pretty darn good.

There’s a disturbing thing that happens in education settings, in disability support and in our own lives. Once increased capacity is noticed, or the person ‘seems’ to no longer be distressed, we take away the scaffolds and accommodations that actually had folks doing better. This needs to change.

I’m rewiring myself to embed the belief that I am worthy of all the supports I need to thrive. This is proving more difficult that that nineteen word sentence conveys btw.

I don’t need to get into distress to justify the accommodations I need. 

I’m off to make a cake.

Resources and content related to this Wild of Brain theme. 

To inform, lift spirits or just because I keep thinking about them:

• Monotropism explained. A graphic developed by Autistic Realms with autistic communities. (The graphic above)

• There is a delightful collection of writings by and about the wonderful Dinah Murray, a self proclaimed ‘productive irritant’ and the co-coiner of the word (and theory of) monotropism, HERE.

• If y’all aren’t following Fergus Murray, you might want to take a look at his work. Dinah is his mama. 

• ‘What is Monotropic Split’ authored by Tanya Adkin on Emergent Divergence. 

• Nate Postlethwaite’s birthday post about being diagnosed autistic in his mid-forties has stayed with me -and probably every other late diagnosed NDer. Dude does incredible work around healing childhood trauma btw. 

• A look at Monotropism and Interoception with the undisputed Interoception Queen, Kelly Mahler.

• Dr Alice Nicholls on The Burnout Cycle.

• My Venn Mandala of the Very Tired. This looks at co-occurring diagnoses common to neurodivergent folks, making clear exactly why we are so tired. The post was shared loads, clearly resonating with many. Original facebook post HERE.

  You can download the Venn Mandala of Tired resource, including a template for you to print out and customise, on the Wild of Brain website.

• Failing to acquire cake, maybe make like this bear. I do love my hammock!

• Or indulge in a little self care like this teeny opossum.

My words are not coming easily today (I’m looking at you, situational mutism) so I came back and recorded the audio version retroactively. Apologies to those of you who were waiting for it.

It’s felt a bit me-centric around here lately. I have a bunch of writings lined up that are decidedly NOT ABOUT ME, phew. Ready yourself for a bunch of book promotion on facebook though, I was couriered the Wild of Brain book proofs, it’s actually happening. Hold onto your hats. 

Love to y’all,

I hope the week brings ease - and cake, whatever that means for you.