Lift the load: a call to look beyond what we might see

Guest contributor, Remie Colledge, shares a call to action to services, employers, educators and allies everywhere: what changes could you make to help lift the invisible load carried by Neurodivergent people, navigating a world that isn’t designed for Neurodivergent minds?

Glance at my life too quickly, and you’ll miss me. I’ll fall back ‘under the radar.’ In the past, words like ‘high functioning,’ (outdated language referring to low support needs,) would overshadow my experiences. Comments like, ‘you are so articulate,’ still cloud my exhausting grapple with language.

Today, I’m welcoming you behind-the-scenes of my life. I write, to make the invisible, visible. And I encourage you to bring along one thing. Curiosity.

Two threads run deep through the words that follow. The first, outdated language, encapsulated by the commonly used, ‘you don’t look Autistic/Neurodivergent.’ Words that stem from many places: from well-meaning, to a lack of understanding and lingering stereotypes. The second thread, what feels like an ever-widening gap within services and support. The gap that’s struggling to see the invisible, the behind-the-scenes reality faced by many Neurodivergent people.

I write only as the expert of my own experience, yet in solidarity to those who might relate. These words are a call to action. To services, employers, educators, and allies.

Help lift the load.

There’s a job I do, every single day of the year, that you won’t see on my CV. It’s a job that’s often overlooked, too often invalidated and dismissed. Yet, it is the single most important role I hold.

This job feels equatable to project management. I attempt to ‘project manage,’ with executive functioning differences. It’s the invisible work, the ‘extra job’ of navigating life as an Autistic person, living with long-term physical health conditions. Crucially, in a world that largely isn’t designed for our Neurodivergent minds. The load of this work weighs heavily on my shoulders. The current landscape faced by disabled people in the UK, adds increasing pressure.

The ‘extra job’ is a careful balancing act of supporting my physical and mental health, my communication, sensory, interoception and executive functioning differences, and simultaneously juggling freelance and employed life. All whilst my needs continually fluctuate.

Let me tell you about the ‘extra job.’

It includes continuously looking ahead to predict what may jeopardise my equilibrium: an impossible task in an uncertain world. Yet, energy management and pacing is vital. I plan my days, weeks and months. At times, making difficult decisions, having to say no to an invitation, when I’m desperate to say yes. It’s a process with no clear answers, a series of best guesses.

“...as much as I embrace my strengths and value my quirks and differences, I face challenges.”

It’s the feeling of every conversation being a manual process. I listen deeply, and then a constant internal dialogue runs at high speed to identify the words I would like to respond with. I second-guess unwritten rules and non-verbal cues, seeking clarity where it’s safe to do so.

It’s negotiating interoception differences, meaning the cues from inside my body are blurred. Hunger, thirst, feeling too hot, too cold, or being in pain all a spiralling whirlwind of unknowns. I rely on routines, reminders and prompts. 

It’s the exhausting battles for the adjustments and support I need across healthcare and systems like Access to Work. The never-ending self-advocacy, attempts to have my voice heard. To make the invisible, visible. I fight to be seen.

It’s making sure I plan in time to regularly decompress and regulate my sensory and nervous systems. Whether that’s time under a weighted blanket, stimming, or sitting in the quietest and darkest space I can find.

And as days end, it’s replaying them in incredibly fine detail. With an attention-to-detail-focused mind, it craves time to process, in a world that keeps getting faster.

This list is just the beginning. I long for the moments to breathe, to just be. 

 The time this ‘extra job’ consumes adds up. It’s an accumulation of tasks, thoughts, feelings, challenges and emotions. A response to living in an overwhelming world that often bombards me from all directions.

My words so far might not paint a picture of Autistic pride. Yet, I am proud: fiercely so. However, as much as I embrace my strengths and value my quirks and differences, I face challenges. Strengths, differences and challenges can all co-exist within a Neurodivergent-affirming lens.

The crucial part? This ‘extra job’ is mainly the impact of the environment around me. And it can take it’s toll. For me, this has looked like overload, shutdown, situational mutism, burnout and poor mental health, historically being catapulted in and out of the mental health system. 

Which leads me to a question: are our systems and support mechanisms designed, adaptable and robust enough to see this nuance, to see behind-the-scenes? To factor in this ‘extra job?’ To respond to my call to action, to help lift the load? 

“As we look to the future about how we can best support Neurodivergent people, to how we reduce widespread inequalities, we must come back to curiosity.”

I’ve invested the time. I’ve learnt many ‘strategies.’ I’ve read countless books, attended webinars, conferences, therapy and coaching. As I heard the calls to ‘use your strategies,’ I even reached a point where I held the entire weight on my shoulders to do what I thought I ‘should’ to successfully navigate this overwhelming world.

But where does it stop? How much can I do, versus how much do I need that call to action to be honoured, for the load of that ‘extra job’ to be lifted. And what would that take?

I’ve asked that question, intentionally with no response. Because the answer will be different for each person, within each environment.

Whilst managing this ‘extra job’ feels like a journey of sheer determination, my belief is this is not about increasing neurodivergent ‘resilience.’ It is about a commitment to dynamic, long-lasting and systemic change.

As we look to the future about how we can best support Neurodivergent people, to how we reduce widespread inequalities, we must come back to curiosity.

Let’s make time and space to look beyond what we might see, to shine a light on both the visible and the invisible.

How can you help lift the load?