You May As Well Say You Don’t Believe Me: A Personal Story Of Late Autism Diagnosis
- 1 day ago
- 11 min read
Updated: 4 hours ago
Late autism diagnosis in women is more common than many people realise. This is my story of discovering I was autistic in my 40s. Understanding my brain changed everything - but the reactions I received were not what I expected.
Introduction
Many years of my life were spent believing something was wrong with me.
I tried harder than everyone else just to keep up - socially, emotionally, mentally - and still felt like I was failing.
It wasn’t until my 40s that I discovered the reason.
I’m autistic.
This is the story of how that diagnosis happened, how it completely changed the way I see my past, and why being understood - even by yourself - can be life-changing.
If This Sounds Familiar…
You may relate to this story if you have ever:
• felt like you were trying harder than everyone else just to keep up
• replayed conversations for hours wondering what you said wrong
• struggled with friendships but never understood why
• quietly wondered if life feels harder for you than it does for others
If that sounds familiar, you’re not alone.
What This Story Covers
My journey to diagnosis didn’t happen overnight. Like many late-diagnosed autistic women, it took years of confusion, research, and reflection.
In this story I share:
• The first time autism was mentioned to me
• How my daughter’s struggles changed everything
• What finally led to my diagnosis
• What happens emotionally after diagnosis
• The reactions you don’t expect when you tell people
Before I started learning about them, autism and ADHD were never mentioned in our family. We knew almost nothing about neurodiversity.
In my mind, autism meant difficulties with communication, and ADHD meant struggling to pay attention. That was the extent of my understanding.
In the last ten years, my knowledge has grown enormously. I still don’t have all the answers or strategies, but I do know this: our family is happier because of the understanding we now have and the tools we’ve put in place.
But for most of my life, I just felt… different.
And that’s something you hear again and again when people share their stories. It sounds like a cliché, but it’s true.
Growing up, my older sister seemed free to be whoever she wanted to be. She could say what she wanted, do what she wanted, and be completely herself. I always felt like I had to be the opposite: studious, quiet, and follow the rules.
Years later, after many conversations, my mum told me she simply thought that was who I was. She never expected that from me. There was no pressure from her side.
So why did I feel that way?
Looking back, I think it was because I didn’t feel like I fit in at all. And when you feel that way, the desire to fit in becomes overwhelming.
The First Mention
The first time someone suggested I might be autistic, I dismissed it completely.
Absolutely not.
But the truth was, I didn’t know anything about autism.
A few years later the same thing was suggested about my daughter. That’s when I finally started looking into it properly.
And suddenly everything I was reading felt familiar.
Yes…
Yes…
That too…
It was a huge lightbulb moment.
This is my daughter.
This is me.
And my immediate thought was:
Why didn’t anyone tell me sooner?
Five years had passed since autism was first mentioned to me.
Five more years of struggling when we could have had five more years of understanding.
Research Before Diagnosis
Before I even considered asking for a diagnosis, I researched everything.
Books, websites, online courses, articles, social media - anything I could find. I needed to be absolutely sure before involving professionals.
For me, asking for a diagnosis felt like the middle of the journey, not the beginning.
First, I had no idea.
Then someone mentioned it.
Then I dismissed it.
Then life got harder.
Eventually I reached a point where I felt like I was sinking while everyone else around me was getting on with life.
I started asking myself difficult questions.
Maybe my life is just harder than everyone else’s. Maybe I’m just failing at life. Maybe I’m just a rubbish human being.
Depression set in.
Searching for Answers
This was while I was married to the love of my life and raising two healthy, amazing children. On paper, everything looked fine.
I was diagnosed with postnatal depression and began taking antidepressants and attending therapy. The medication helped for a while, but eventually I would have to change brands because they stopped working.
Over the years I tried different types of therapy. Each one helped in the short term, but nothing really changed long term.
Then one day my GP mentioned a study she had read in a medical journal. It described women in their 40s who had been quiet, shy, studious children, struggled socially, and were later diagnosed as autistic.
We talked about my childhood.
She suggested it might be worth exploring.
At the time I didn’t do any research. I simply attended the assessment appointments and answered the questions the way I thought they should be answered.
And that was that.
My Daughter’s Anxiety
Later, when my daughter began experiencing severe anxiety, we tried to help her using strategies we had learned ourselves.
But nothing seemed to work.
The advice we gave simply didn’t make sense to her. It went straight over her head.
In our fifth family therapy session, the therapist asked the most important question I’ve ever been asked:
“What do you want to get out of this?”
My answer came immediately.
I never wanted my daughter to struggle through life with anxiety and depression the way I had.
And that’s when I mentioned something her head teacher had suggested: looking into autism.
Another Lightbulb Moment
Our final therapy session involved filling out a referral to CAMHS (Child and Adolescent Mental Health Services) for an autism assessment.
Every question felt like another small lightbulb moment.
Yes, she’s always done that.
Yes, that too.
And that as well.
I could give examples for almost every question.
That night I went home and started researching autism in females.
I found an online course and ended up screenshotting every slide. It felt like reading an autobiography of both my daughter’s life and my own - from infancy, through childhood, adolescence, pregnancy, and motherhood.
So I wrote a document.
Slide by slide, I explained how each trait appeared in my daughter’s life.
I took it with us to our CAMHS appointment.
Initially the focus remained on her anxiety. After an hour they agreed there was significant anxiety present - but that was all.
I listened to them, but disagreed.
I handed them my document.
They took it away to read.
Soon afterwards, my daughter was referred for a full autism assessment.
Turning the Lens on Myself
Afterwards I went home, copied the document, and rewrote it about myself - from childhood through adulthood, relationships, pregnancy and motherhood.
I gave it to my GP along with a letter addressed to the company that had previously assessed me three years earlier.
I explained something important: during that assessment I had unknowingly masked my way through the entire process.
At the time I didn’t realise that I had spent most of my life masking - copying behaviours, rehearsing conversations, and trying to appear as though everything was easy.
I admitted to my GP that I had never chased my results because I assumed nothing would come of it.
They contacted them on my behalf.
The company replied saying I had previously been diagnosed with an anxiety disorder. However, after reading the document I had written, they were willing to reassess me using a different approach.
Finally Being Seen
This time I met with a speech therapist.
Over several appointments we talked, completed communication and literacy assessments, and my husband attended an in-depth session too.
Eventually I received my diagnosis:
Autism.
I had never felt such relief.
By that point, it felt like the only explanation for how I had experienced life.
I had my diagnosis letter.
I was signed off.
And then the question appeared:
Now what?
After Diagnosis
The imposter syndrome was real.
Diagnosis wasn’t the end of the journey - it was the beginning of understanding.
Now the real learning had started.
What strategies exist?
What actually helps?
What needs to change?
And then the doubt crept in.
What if I exaggerated?
What if I made it all up?
What if I somehow fooled them?
I wish I could go back and tell myself something I know now:
Almost every neurodivergent person questions their diagnosis.
If you are researching this deeply, there is usually a reason.
Something in the information feels familiar.
Something resonates.
Re-Examining My Past
Writing that report about myself forced me to revisit memories I had replayed in my mind for years.
Failed friendships.
Broken relationships.
Emotional ups and downs.
The depression.
The feeling that I was fundamentally failing at life.
It was like opening a can of worms.
It was painful.
But it was also necessary.
Because alongside the sadness came anger.
Autism in women isn’t new. It simply presents differently.
Yet for decades many of us were misdiagnosed with anxiety, depression, or other conditions.
I was angry that I had suffered in silence for so long.
Angry that my self-confidence had been eroded - partly by others, but also by myself.
I didn’t believe in my own abilities.
I passed up opportunities because I assumed I would fail.
The Comparison Trap
I spent years looking at other people and wondering how they seemed to have everything together.
Were they just better at life than me?
Or better at hiding it?
Either way, it always made me feel like I was falling short.
How do people take on tasks without feeling like they need to work at 500% just to achieve the minimum?
How do people talk to others without rehearsing every sentence beforehand?
How do people socialise without feeling like they’re crawling out of their own skin with anxiety?
How can someone feel so lonely in a room full of people?
A diagnosis didn’t magically remove those thoughts.
But it gave me something invaluable:
context.
Understanding How My Brain Works
One of the biggest realisations after my diagnosis was that I wasn’t experiencing life the same way many other people were.
For years I assumed everyone’s brain worked like mine. I thought everyone analysed conversations afterwards, rehearsed what they were going to say before speaking, and noticed every tiny detail in a room. I thought everyone felt overwhelmed by noise, smells, or too much information at once.
It never occurred to me that other people might simply move through the world without their brains processing quite so much, quite so intensely.
Understanding that difference didn’t suddenly make life easier, but it did something incredibly important.
It helped me realise that I wasn’t failing at being human.
My brain was simply wired differently.
One moment that really highlighted our differences happened after one of my assessment sessions.
I asked my husband a question I had been asked.
“How many animals can you name in 60 seconds?”
He listed them and I counted somewhere in the high forties.
I was amazed.
I had managed eighteen.
When I asked how he did it, he said the animals just came to him - pets, farm animals, sea creatures - jumping from one category to another.
When he asked how I got only eighteen, my answer was simple.
“I walked around the zoo.”
When I ran out of animals we had seen, my brain stopped.
Another example involved a riddle about two men.
My husband solved it quickly.
But when we compared notes afterwards, he was confused by my description of the characters.
To him, they were just men.
To me, I could describe everything - their clothes, hair, glasses, moustache, even the bowler hat one of them wore.
My brain fills in every detail automatically.
His doesn’t.
Moments like these helped both of us understand why my processing sometimes takes longer.
My brain is incredibly visual and literal.
Discovering More Differences
Another revelation came through reading.
I have always found autobiographies easiest to read. Or books that have been adapted into films or television.
I realised why.
When I read, I hear the words in someone’s voice.
If I’m reading an autobiography, it’s the author’s voice. It feels like they are speaking directly to me.
My husband finds this hilarious because he doesn’t have a voice in his head when reading, just his imagination.
For him, the words are simply… words.
I also discovered that many people don’t see words visually when they speak.
I do.
During conversations I see words scrolling in front of me, about a foot away from my face.
It explains why conversations can be difficult.
If I hear a word I don’t understand, my brain pauses to process it.
But conversations don’t pause.
By the time I catch up, the topic has already moved on.
Now I stop conversations when I need clarification.
And I’ve learned something else about myself: if there is a strange smell or unexpected noise in the room, my brain fixates on it until I identify the source.
Only then can I focus again.
Telling Others
A diagnosis is personal.
You decide who to tell.
I chose to tell people straight away. My friends and family already knew I was being assessed, so it felt natural to share the result.
Some responses were supportive:
“That must be so clarifying.”
“We love you regardless.”
“That’s amazing that you understand yourself better.”
But I also heard things like:
“Everyone feels like that sometimes.”
“Why do you need to label yourself?”
“I know someone who is much more autistic than you.”
“You’re just quirky.”
And in the case of my daughter:
“She’ll grow out of it.”
The Label Debate
I didn’t seek a diagnosis to prove anything to anyone.
I sought it because feeling stupid, depressed, and even suicidal because life felt impossible was unbearable.
Most of us want to be the best version of ourselves.
This is simply my way of doing that.
People often talk about autism diagnoses as “labels”.
But when I was diagnosed with breast cancer, no one called that a label.
It was a diagnosis that allowed me to receive the right treatment and support.
Why should this be different?
Finally Understanding Myself
Understanding how my brain works has been empowering.
It allows me to advocate for myself.
It allows me to search for strategies that actually help.
Some work. Some don’t.
But my life is better because I understand myself.
I feel freer to be who I really am.
I feel more peaceful within the chaos of life.
And I am still learning.
If Someone Trusts You With Their Diagnosis
If someone shares their diagnosis with you, please understand something.
They haven’t come to that conclusion lightly.
They have likely spent years questioning themselves.
Years feeling like they were failing at life.
Years wondering why everything felt so much harder for them than it seemed for everyone else.
So when they tell you, they aren’t looking for judgement or comparisons.
They’re looking for understanding.
Not:
“Everyone feels like that.”
or
“I know someone more autistic than you.”
What they really need to hear is something much simpler.
How do you feel?
You never need to mask around me.
Is there anything I can do to support you?
And most importantly:
I love you.
I spent many years suffering in silence.
That’s why I share my story now.
If this resonates with you, or reminds you of someone you care about, please share it. Stories like this help people feel seen, understood, and less alone.
There is no shame here.
No judgement.
Only understanding.
If You’re On This Journey Too
If parts of this story felt familiar, you’re not alone.
Many people discover they are autistic or ADHD later in life - often after years of feeling different, overwhelmed, or misunderstood.
Understanding your brain can be life-changing, but it can also bring up a lot of questions.
On Living Decoded, I share personal stories and reflections about:
• late autism and ADHD diagnosis
• navigating life in a neurodiverse household
• masking, burnout, and identity
• learning how to live in a way that actually works for your brain
If this is a journey you’re on too, you may find some comfort or recognition in the other stories here.
JuJu x
If this story resonated with you, you may also like:
Being A Neurodivergent Mum To Neurodivergent Kids
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