From Shutdown to Self-Advocacy: My Late Diagnosis Journey
It was a night in December. I was in London at my work’s Christmas party. Everyone around me was laughing, drinking, and winning awards. But I couldn’t speak. I couldn’t even move.
That night was the moment that changed everything. The night I experienced my first autistic shutdown.
Up until then, I’d always been anxious in social settings, but I’d coped. I’d spoken at conferences, presented to hundreds of people, worked in fast-paced environments. Anxiety was familiar to me, but this was different. It was like my entire system just shut down.
The Night of My First Autistic Shutdown
I remember the flashing lights, the noise, the banging on tables when award winners were announced. There was the smell of alcohol. I remember wanting to join in, to smile, to connect. But I just couldn’t. Something inside me went offline. I don’t drink, so felt excluded from the beginning of the evening, too.
That’s what a shutdown feels like for me. And if you’ve experienced one, you’ll know that it’s not about choosing to withdraw, it’s almost like your brain is saying “I can’t process this anymore.”
The Night That Changed Everything
If you’d like to hear me talk through that December night — my first autistic shutdown, the overwhelm, and how it led to self-advocacy — watch the video here.
Watch on YouTube (opens in a new tab)What an Autistic Shutdown Really Feels Like
Shutdowns are one way the autistic brain protects itself from overwhelm. When sensory input, social pressure, or emotional intensity gets too high, your body goes into survival mode.
For some people, that means going into a meltdown; an external, visible, expression of distress. For others, like me, it’s shutdown, which is more like an internal collapse.
When that happens, in that moment, you can’t think, speak, or act “normally.” You just need the world to stop.
Essentially, it’s your brain’s way of saying: “enough.”
Understanding that has been one of the most validating parts of my diagnosis journey. Because for years, I labelled myself as “overreacting,” “too sensitive,” or “awkward.” Learning the truth, and that my brain was doing exactly what it needed to do to survive an environment not designed for it, helped me learn to be kinder on myself.
Searching for Answers After My Shutdown
When I got home after that night, I couldn’t shake the question: Why did that happen? I’d never shut down before — not like that.
So I did what most of us with ADHD and autism tendencies do: I hyperfocused. I read everything I could find on autism in women. I fell into forums, articles, and videos — and for the first time, everything made sense.
The sensory overwhelm, the burnout cycles, the social exhaustion, the lifelong feeling of not fitting in — they weren’t random quirks. They were part of a pattern I’d never had language for.
That’s when I first considered pursuing an autism diagnosis.
The First Roadblock to Getting a Diagnosis
I went to my GP, full of research, notes, and examples. Because when you realise that you might be neurodivergent, let me tell you, you go on the deep dive of deep dives! I was prepared and I thought: finally, I’ll get some clarity.
But I was told; “there’s nowhere to refer you.”
No local service. No waiting list. No pathway. Just nothing.
It was after COVID and UK diagnostic services in the NHS were overwhelmed. But still, hearing “there’s nowhere for you to go” felt like hitting a brick wall.
I remember sitting there, holding all this new understanding of myself, and being told there wasn’t anywhere to go further.
That’s when I realised something crucial: receiving a diagnosis is a privilege.
The thing is that being diagnosed as autistic or having ADHD doesn’t change whether you are actually neurodivergent. What it does do, though, is allows you to be recognised, supported, and protected within systems. So, when you don’t have access to diagnostic services to even start that process, you’ll be left navigating a world that expects you to fit in without ever understanding why you can’t.
It means you miss out on accommodations, compassion, and the validation that comes with finally having a name for your experiences, and that can make surviving, let alone thriving, so much harder.
That, is why I consider a diagnosis to be a privilege.
Discovering ADHD and Realising I’m AuDHD
The doctor I saw was actually really supportive. He gave me two questionnaires to fill in; one for autism, one for ADHD. At the time, I hadn’t researched ADHD at all. I thought it was just about hyper kids who couldn’t sit still.
So, my wife and I sat down to fill it out. And halfway through, we both looked at each other like… oh.
Turns out, ADHD isn’t always what we’re taught it is. Especially in women.
ADHD can also be:
Distraction masked as daydreaming.
Chaos hidden behind high achievement.
Emotional intensity disguised as “too sensitive.”
And as I ticked every box, I realised something.
I’m not just autistic. I’m ADHD too.
That was the start of understanding what it means to be diagnosed AuDHD; autistic and ADHD combined.
How do you say AuDHD? Good question! Some people say it like ‘or-dhd’ and others (myself included) say A-u-DHD. There is no right or wrong way, you can refer to it in the way that works best for you and your brain. Often I just said I’m an autistic ADHDer!
Learning to Self-Advocate After Diagnosis
Since there was no autism referral available, my GP referred me for ADHD assessment through Right to Choose. This is an NHS pathway that allows you to pick your provider.
A year later, I got my ADHD diagnosis.
That honestly felt like progress. But it didn’t fix anything.
I knew I still needed my autism diagnosis. It wasn’t just for personal validation, but for protection at work. I needed confidence when asking for reasonable adjustments. I needed to stop forcing myself to survive in environments that constantly drained me.
Something else I couldn’t ignore, was that once my ADHD was medicated, my autistic traits got so much more intense.
So, I looked at private options.
It wasn’t cheap.
It took time.
But I was lucky enough to be able to afford it, and after a year and a half, I finally got my formal autism diagnosis.
That day changed everything for me, but also, at the same time, it changed nothing.
The Grief After My Autism Diagnosis
When you get diagnosed late in life, you expect to feel a sense of relief, and you do. But what no one prepares you for is the grief.
Grief for the child you were, the one who struggled silently, punished for traits that were actually symptoms.
Grief for the teenager who masked so much she didn’t even know who she was.
Grief for the adult who burnt out over and over, blaming herself for being “too much” or “not enough.”
It’s a strange duality. You finally understand yourself, but you also see, with this new, painful clarity, how different things could have been if you’d known sooner.
And that after diagnosis grief is something not enough people talk about.
Unmasking and Finding the Real Me
After diagnosis, I had to unlearn years of masking and perfectionism. I had to figure out what “authentic me” actually looked like, without people-pleasing, without overcompensating. And that’s not easy.
My autism (and ADHD) diagnosis gave me permission to be me. To realise who I am, really. It took time and even today, three years later, this journey is still ongoing.
Unmasking and discovering myself included things like:
Creating boundaries.
Saying no.
Asking for accommodations.
Viewing my sensory needs not as inconveniences, but as information.
And finally, reminding myself: self-advocacy is a form of self-respect.
Why a Diagnosis Isn’t a Magic Fix
A diagnosis doesn’t fix you or make everything perfect. Especially with autism, because there’s no medication for it. There’s no magic switch that suddenly makes the world more accommodating. Life doesn’t suddenly get easier or more manageable.
But what a diagnosis like this does give you, is language:
Language to explain your needs.
Language to challenge inaccessible systems.
Language to finally say, “I’m not broken; I’m different.”
And that’s powerful.
So, if you’re thinking about seeking a diagnosis, that might be how you found yourself here, whether formal or self-diagnosed, I want you to know this: you’re valid. Your experiences are real. And you deserve understanding and support, no matter what the paperwork says.
How to Start Self-Advocating as a Neurodivergent Adult
If you’ve recognised yourself in parts of my story, here are some small, practical steps to begin your own journey of self-advocacy:
Document your experiences
Keep notes of situations where you struggle or feel sensory overwhelm. Patterns help you recognise your needs clearly.
Research your rights
Look into the NHS Right to Choose pathway for ADHD or autism assessments. There are multiple providers now accepting referrals directly.
Build your support network
Join neurodivergent communities online. Find people who get it. You’ll realise you’re not alone, and you’ll learn so much from shared experiences.
Communicate your needs
Whether at work, home, or social settings — practice explaining what helps and what doesn’t. It’s not complaining; it’s self-preservation.
Allow yourself to grieve
It’s okay to feel sad about the time you lost without knowing. Grief is part of healing.
Celebrate the clarity
Diagnosis, whether self or formal, is not the end of a journey. It’s the beginning of living life more aligned with who you truly are.
From Understanding to Empowerment
Today, I wouldn’t trade my diagnosis for anything. It gave me understanding, language, and community.
But most of all, it gave me permission. To stop masking, to rest without guilt, and to advocate for myself unapologetically. It took time for sure, but I am so much happier now than I was.
If you’re on your own diagnosis journey, whether you’re researching, waiting, or just beginning to suspect, please know this: you are not broken. You don’t need fixing. You’re just different. And that’s actually OK.
And sometimes, self-advocacy is the first step in building that environment.
As I always say: show up, stay you, and keep speaking up for the version of yourself who didn’t yet know how.
Frequently Asked Questions About AuDHD
Before I wrap up, I wanted to include answers to a few of the questions I’m most often asked about autism, ADHD, and late diagnosis.
If you’re at the beginning of your own journey, I hope these help you feel a little more informed, and a little less alone.
What does an autistic shutdown feel like?
An autistic shutdown can feel like your brain or body suddenly “turns off.” You might go quiet, freeze, or struggle to speak or move. It’s not a choice; it’s your brain’s way of protecting itself when it becomes overwhelmed by sensory input or emotional intensity.
Can you get an autism diagnosis as an adult in the UK?
Yes, you can, but waiting times can be very long. Many adults now use the NHS Right to Choose pathway, which allows you to select an approved provider for your ADHD or autism assessment. This can often be a faster and more accessible route to diagnosis.
What is AuDHD?
AuDHD is a term used when someone is both autistic and ADHD. These two neurotypes often overlap and interact, making life more complex at times, but once understood, it can also bring incredible insight and self-awareness.
If you’ve made it this far, thank you for taking the time to read my story. I share it because I know how isolating this journey can feel, but you’re never truly alone in it. Whether you’re seeking answers, learning to self-advocate, or simply trying to understand yourself better, know that your experiences are valid and your voice matters.
If this resonated with you, please share it with someone who might need to hear it today — you never know who it could help.
Want to Connect?
If my story resonated with you, or you’re navigating your own late-diagnosis journey, I’d truly love to hear from you. Whether it’s to share your experience, ask a question, or explore how I can support you; my inbox is always open.
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