The Struggles of Late Autism Diagnosis
- Antonia Kenny
- Jun 18
- 7 min read
The Things We Miss Until We See Them
By Antonia | @Unremarkable Me
This isn’t my usual lane when it comes to chronic illness.
It’s not something I live with myself. It’s not something I’ll ever fully understand from the inside. But it is something I’ve seen up close—up real close—with Sam, my partner. And over time, I’ve watched how late-diagnosed autism has changed things for him. Some for the better. Some still tangled and difficult. But all of it real.
Sam was diagnosed as autistic in adulthood. Not as a child. Not as a teen. Long after all the classrooms and playgrounds and awkward years where maybe—just maybe—someone could’ve seen the signs. But they didn’t. Or maybe they did and didn’t understand them. Maybe he just “seemed smart” or “shy” or “too sensitive.” Maybe he learned early to mask it all so well that even he didn’t quite realise what he was doing. Whatever the reasons, he grew up without the words that might’ve helped him feel less alone in his own head.
I’ve had the privilege of watching this all unfold—not just the diagnosis itself, but the before and after. And what I’ve seen most clearly is this: knowing didn’t change who Sam is. It changed how the world made sense to him. And how he made peace with parts of himself that had always been there, just unnamed.
He’s allowed me to share this because we both believe it matters. Because there are people out there—maybe even reading this—who have spent years thinking they were just “bad at life,” when in reality they were doing the best they could without a map. This isn’t a medical guide. It’s not a checklist. It’s simply what I’ve seen and felt, standing beside someone I love, as they finally began to understand the shape of their own brain.
Before the Diagnosis – The World Felt… Tilted
Looking back, the signs were there. Not in a dramatic or obvious way. Just in the little things—the everyday moments that most people take for granted, but for Sam always came at a cost.
Crowds made him twitchy. Loud noises stuck in his skull long after they stopped. Eye contact wasn’t impossible, just exhausting. Conversations—especially the small, meandering kind—felt like puzzles missing half the pieces. He’d replay them later, sometimes for hours, trying to work out what he said wrong, or why the other person had suddenly gone cold.
Routine was survival. Not because he was fussy or inflexible, but because the world felt chaotic without structure. He needed to know what was coming next, and if plans changed suddenly—even something minor—it could knock his whole day sideways.
He developed coping strategies, though neither of us called them that at the time. He’d script out conversations in his head before social events. He’d keep headphones in as a buffer in public, even when he wasn’t listening to anything. He got very good at reading tone and expression—but it was learned behaviour, not instinct. Like trying to decode a language you were never taught.
And masking… that was near constant. He could blend when he needed to. Could come across as charming, funny, confident. But it always came with a cost. After a full day of social interaction, he’d be completely drained—like someone had unplugged him and forgotten to tell him where the socket was.
None of this looked like what we thought autism “was.” It didn’t fit the childhood stereotypes or the medical tick-boxes we were familiar with. It just looked like Sam being “quirky,” or “intense,” or “not quite comfortable in his own skin.”
And so we missed it. Like so many do.
The Moment of Realisation – And the Space That Followed
It didn’t hit us all at once. It was more like a slow unfurling—a series of quiet conversations, late-night “what ifs,” and online rabbit holes that ended in articles or videos that left Sam blinking at the screen. The more he read, the more familiar it felt. Other people’s stories sounded like they were quoting his internal monologue.
Eventually, he turned to me and said, “Do you think this could be me?” And it was one of those moments where everything pauses, because deep down, I already knew what my answer would be.
The assessment process was slow and clunky. It wasn’t built for adults. But when the psychologist finally confirmed what Sam had already suspected, it was a strange kind of relief.
Relief… but also grief. Because once you have a name for something, you start seeing all the places where that name could’ve helped. School. Friendships. Jobs. The exhaustion he never had language for.
What Diagnosis Changed – and What It Didn’t
The diagnosis didn’t change Sam. It changed the lens.
Suddenly, things that once felt like flaws or failings—being overwhelmed by noise, needing routine, struggling to decode group dynamics—became understandable. Not easy, but explainable. And with that came compassion. From both of us.
There’s something incredibly freeing about finally having the right language for your experience. He wasn’t broken. He wasn’t failing. He was just autistic. And no one had told him.
The Struggles of Late Autism Diagnosis: Why It’s So Bloody Hard—and Why It Shouldn’t Be
Here’s the thing: Sam was lucky in one way—he got his diagnosis. But getting there? That’s a battle far too many don’t win. If you're an adult trying to get assessed, the road is long, uneven, and full of traps. Here’s why.
1. The Medical System Still Thinks Autism Is Just for Kids
Despite being a lifelong condition, autism is still treated like something that either shows up in childhood or not at all. If you’ve made it to adulthood without a diagnosis, some doctors assume you’re “fine.”
Outdated stereotypes don’t help. Many professionals still expect autism to look like Rain Man: nonverbal, visibly distressed, socially isolated. If you’re verbal, employed, or appear “functional,” your concerns are often dismissed.
“You’ve made it this far—why do you need a diagnosis?”That’s like telling someone with diabetes, “Well, you haven’t died yet, so what’s the problem?”
And if your GP doesn’t understand adult autism? You might never even get a referral.
2. Long NHS Waiting Lists: A Game of Patience (and Suffering)
Let’s say your GP listens. Great. Now prepare to wait two to five years for an adult autism assessment through the NHS.
Some areas don’t offer assessments at all. And while private routes exist, they cost between £1,000–£3,000—an impossible ask for many.
By the time adults receive formal diagnoses, they’re often in crisis: mentally burnt out from years of masking, misunderstanding, and surviving a world not built for them.
3. The Misdiagnosis Minefield
Autistic adults, especially women and AFAB individuals, are routinely misdiagnosed:
Anxiety
Depression
Bipolar disorder
BPD
ADHD
While some of these may also apply, they often miss the core issue: undiagnosed autism. And each misdiagnosis adds time, confusion, and the wrong kind of help.
4. The “Not Autistic Enough” Argument
Masking works too well sometimes. Adults who've spent their lives blending often get told they’re “not autistic enough”—because they’ve learned to survive at their own expense.
Women especially fall through the cracks, as the original diagnostic criteria were built around boys. If you don’t fit that mould, you’re often overlooked.
Being able to function isn’t the same as thriving.
5. Post-Diagnosis: The “Now What?” Problem
So you finally get your diagnosis.
And then… nothing.
No follow-up. No support plan. No guidance. Just a label, and maybe a leaflet. Workplaces don’t always take it seriously. Friends and family may question it:
“But you’ve always seemed normal.”
Diagnosis is the beginning of the journey—not the end.
Living With It, Not Around It
We don’t tiptoe around it now. Autism isn’t a hidden thing in our house—it’s part of the story. We’ve learned to build space around it. To rest more. Plan more. Speak in shorthand when things get overwhelming.
It hasn’t solved everything. But it’s created room for honesty. Sam doesn’t have to mask with me anymore. That, in itself, is healing.
So, What Needs to Change?
Better GP training – Especially around adult autism and non-male presentations
Shorter waiting lists – No one should wait half a decade for answers
Inclusive diagnostics – That recognise masking and diverse experiences
Post-diagnosis support – Actual help, not just a file note
Awareness in workplaces and families – Adults don’t “grow out of” autism
Why They’re Afraid
One thing I’ve noticed—especially since Sam’s diagnosis—is how unsettled some people become when faced with neurodiversity. There’s this quiet, clumsy fear around it. Not because autistic people are threatening, but because they see the world differently—and let’s be honest, that world isn’t exactly thriving right now.
Neurodivergent minds often question the systems everyone else just accepts. They spot the cracks. They challenge the noise. And that can feel disruptive to those who’ve built their lives around following a path that isn’t working for most of us anyway.
Sam often says the worst invention humanity ever came up with was money—and I don’t disagree.“Transactional culture is our downfall,” he tells me. And the more I sit with that, the more I think he’s right. Somewhere along the way, we stopped helping each other without a receipt. We used to be communities. Now we’re networks. Connections with conditions.
Neurodivergent people aren’t broken. They’re the ones quietly pushing toward a better version of the world. And maybe that’s why society still tries so hard to silence them, flatten them, or delay their recognition. Because deep down, we know—they’re not the problem.
They might be the solution.
Final Thoughts – Not a Ribbon, But a Thread
A late autism diagnosis isn’t about finding a new identity. It’s about finding the truth you’ve always known but never had the words for.
For Sam, it’s been a slow, sometimes painful unfolding—but also a liberating one. He’s not pretending anymore. Not shrinking. Not explaining himself for other people’s comfort.
Getting a diagnosis as an adult shouldn’t be this hard. But for many, it’s the first step toward a life that finally fits.
And that? That’s worth everything.
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