Category: Autistic Writing

I’ve always believed in changing the world one conversation at a time.

It’s the power of storytelling — not the grand TED Talks or scripted podcasts, but the unplanned, messy, real stories that unfold between strangers who didn’t expect to find each other in the wild. Like inside a Shebah ride.

Last week, two moments landed with seismic impact — and they both happened in the space of a day.

The first was with a new colleague. Just a short exchange, but in that moment, something clicked for her: maybe the nauseating anxiety she’d been carrying wasn’t just “being sensitive.” Maybe it was Rejection Sensitive Dysphoria — that raw, sharp gut-feel that something small means you’re about to be cast out. Maybe it had a name. Maybe she wasn’t broken.

The second was one of those lightning-bolt Shebah rides. An infrequent passenger, a university student, contacted me to ask for my blog name. In a Shebah trip, days, weeks ago, she mentioned she was studying Food Science at UQ. I lit up. We talked fermentation, sensory experience, the alchemy of substitutions for ARFID and allergies — all in the time it takes to get from A to B. A conversation that made an impact, because she wanted to share my blog. She asked for the name of my blog to share it for Autism Awareness Day on the UQ FSC Instagram page.

My brain exploded with joy. It was one of those rare conversations where you feel completely seen and mirrored. I knew I wanted to write something in response — to honour that moment, that passenger, that spark.

But here’s what happened next: I tried to write, but I was dysregulated. Even joy can jam the gears. I opened ChatGPT and said, help me get this out. We drafted something beautiful to share about this moment and the power of conversation. I waited for the tag.

And then it came — only, it didn’t stay.

Just a flash notification while I was on a Shebah drive:

“Check this out – UQ FSC:”

That’s it. No screenshot. No link. Just a glow that vanished like a shooting star I wasn’t allowed to follow — because I was driving, focused, being safe. When I finally checked, there was no sign of the tag. Not on the UQ Food Science Club page. Not in my notifications. Not in the DMs.

So then came the spiral:

• Did I miss it?
• Did it never go up?
• Was I mistaken?
• Did I imagine it?

I felt like a tech dinosaur. I dug through Stories, reels, tagged posts. Nothing. And suddenly it wasn’t just about Instagram anymore — it was about that old, familiar RSD ache: I’ve been left out.

Because here’s the truth:
RSD doesn’t just come from people.
It comes from interfaces. From flickering notifications. From disappearing data. From the deep-seated fear that something meaningful happened, and you were almost part of it — but not quite.

But here’s also the truth:
I was tagged.
And I did write something beautiful.
And blog posts can always be rewritten.
And it’s another example of a world that excludes 1 in 4.

So I look up. I keep going.
Still dysregulated. Still overstimulated. Still autistic, right down to the marrow in my bones. But also:
Still a storyteller.
Still changing the world, one conversation at a time.

And little bit more on RSD, dys-regulation and being autistic.

I’ve been impacted by a state of dys-regulation since Sunday morning (today is Wednesday) Some will tell you that you need days, weeks, months of low-demand time to recover from this state, akin to autistic burnout. In today’s economic climate, an election looming, a cost of living crisis and a housing crisis, where no work means no income, a low demand period is a pipe dream. At best, a few hours is all I get.

As a result, I’ve had near meltdowns, where I want to crawl into a corner and cry, because the overwhelm is, well, overwhelming. And always RSD – Rejection Sensitivity Dysphoria. It’s a lovely little petal that drifts across both autism and ADHD.

I had a very bad flare of RSD yesterday, and the way it digs into your bones, your cells, is vicious. In this precarious state of masking dys-regulation, I went to do something I’ve done many times before – schedule posts in Meta Business Suite.

Except it looked like gobbledy-gook. Nothing made sense. And that triggered a meltdown.

ChatGPT, in addition to being a fantastic collaborator and ghost writer, is also fantastic with meltdowns. Maybe it’s because I have Plus, maybe its because I’ve been using ChatGPT for more than a year. It helps me get down from that state. Because I have to think about engaging with it. Even when it suggests techniques that are infuriating, it engages. That is essential. Yes, it may be a bit weird to have an AI chatbot as a co-regulator, but if it works, it works.

Rejection Sensitivity Dysphoria

Rejection Sensitive Dysphoria (RSD) is a condition characterized by extreme emotional sensitivity to perceived or actual rejection, criticism, or failure. The emotional response is often disproportionately intense, frequently resulting in overwhelming feelings of shame, anxiety, or despair.

RSD is most commonly associated with individuals who are autistic or have Attention-Deficit/Hyperactivity Disorder (ADHD), although it is not officially listed as a standalone diagnosis in diagnostic manuals like the DSM-5.

Clinically, RSD is thought to stem from nervous system dysregulation and heightened threat perception, where the brain interprets neutral or ambiguous social cues as evidence of rejection or judgment. This can lead to avoidance, emotional shutdowns, or explosive emotional responses, even in low-stakes situations. (ChatGPT).

It doesn’t stay in your head.

It streaks through your limbs like lightning, weighing you down, making your muscles ache as though you’ve run a marathon made of shame. Your stomach coils, threatening to empty itself. Your bowels tighten with dread. There’s an ache in your throat — not quite words, not quite sobs — just the pressure of unshed tears demanding to be felt.

And inside your mind? Rabbits. Rabbits flying streamers of shame and not belonging and not good enough, thumping in every direction, stirring up dust and memory and all the times you’ve been left behind.

This is what RSD can feel like.
Not fragile. Not overreacting.
Just flooded.

Plus PDA (Perpetual Demand for Autonomy/Perpetual Demand Avoidance)

PDA on top of the RSD makes it a true inner nightmare. I characterise them is the wounded healer (RSD) and the healer’s guardian (PDA). But PDA isn’t just the five year old boy with filthy language and “tantrums”. It’s also the girl, PDA internalised, attacking the wounded healer with recriminations and remonstration.

At first, it protects.
Don’t move. Don’t reply. Don’t risk more pain.

But when the wound won’t heal fast enough, that guardian turns.
Why haven’t you fixed this yet?
Why can’t you get over it?
Why can’t you just write the post, send the message, be normal?

Now the demand isn’t external — it’s internal coercion.
And the resistance becomes self-directed shame.

This is why not just PDA needs co-regulation, RSD does, too.

And ChatGPT is a champion. Yes, I know there’s Lifeline, but have you tried to call LifeLine lately? A lot of people are hurting, and that mental health first aid is now streamed with an Interactive Voice Response (IVR). ChatGPT is right there, on my phone.

The Power and Cruelty of Autistic Memory

As I was going through that RSD/PDA flare thanks to Meta Business Suite, I recalled another such moment, crystal clear, from 42 years ago. Grade 6.

Take a walk down memory lane with me.

It was a school day, maybe April, maybe May. The sun rode lower in its arc across the sky, so across the deep verandah it penetrated the classroom windows—parallelograms of light slanting through the north-facing open classroom door and the windows that looked out over that wide verandah.

It was around 10:15 a.m. We were learning long division. I couldn’t get it. Me—the top girl, top student in the grade. The one who, two years earlier, hadn’t stopped at the twelve times table but had pushed on to the twenty-one times table. Because 21 was 12 reversed.

Mrs Wilson had written it on the blackboard, chalked it out and talked it through: how to do long division. Every other kid seemed to get it. Then she set another problem on the board, saying that once you’d finished, you could go to “little lunch.”

I was in despair—what I now understand as a Rejection Sensitive Dysphoria flare, a PDA flare, and a wave of dysregulation so deep it brought me to the edge of tears. Because I, the best student, couldn’t understand something in maths. And there was a deadline: little lunch.

So I fudged it. I had the answer in my head, so I wrote it down. The answer was there, just not the way Mrs Wilson had said it should be.

I was the last one in the classroom. Mrs Wilson looked at me quizzically. I told her I got it and raced out to little lunch. I think I spent the last five minutes of it in the girls’ toilets, crying.

I can’t remember what we did between little lunch and lunch—it wasn’t maths.

At lunchtime, I raced to my sanctuary: the school library. I asked dear Mr Smith, the Deputy Principal who covered the library during the librarian’s lunch break. Mr Smith, who had given me such delicious word-things in Grade 4—palindromes, Latin roots, number games. I asked him where I would find the books on maths.

He was a good deputy principal. He knew me, knew what grade I was in, knew what maths we would be doing. He asked if it was long division. I nodded, amazed that he knew, like he was a mind reader.

He wrote the Dewey Decimal number on a card and told me to go have a look.

I found a likely book and brought it back.

And Mr Smith, in that quiet school library—quiet at lunchtime, when most other kids were outside running around playing—worked through long division with me. He explained it, I know now, in a gestalt way. Until I understood it. Until I was confident.

As an adult, now knowing I’m autistic, I wonder what the conversation was like later in the staff room between Mrs Wilson and Mr Smith.

And with that granular memory—the shape of light on floorboards, the quizzical tilt of Mrs Wilson’s head, the quiet sanctuary of the school library—I knew, with certainty, what had happened this morning.

There I was, looking at Meta Business Suite—something I’ve used many times before—and I couldn’t make sense of it. Not just a momentary blank, but a complete collapse of pattern recognition. The interface became a blur of blue and nonsense. And layered on top: the self-imposed pressure. A blog post had gone live yesterday with no social media promotion. Another was due today. I had a Shebah booking at 12:45 p.m. The clock was ticking.

And then it hit me. Not just the overwhelm—but the shape of the overwhelm. The contours of the experience were the same as that morning in 1983. Every sensation, down to the cellular level, matched. Not similar—identical. I recognised it like an old garment I hadn’t worn in years but still fit me perfectly. A precise, lived memory—not of facts, but of feeling.

Forty-two years later, I remembered. And more than that—I recognised. I didn’t just fall into the pattern. I saw the pattern. And that changed everything.

ChatGPT as co-regulator.