From Misunderstood to Supported — What Changed (and When)

He was first flagged in primary school.

A quiet teacher (possibly autistic himself) gently suggested it:
“Keep an eye on things. No rush for a diagnosis. But when the teenage years hit, that’s when communication issues, hormones, and complexity really ramp up.”

He wasn’t wrong.

It had been on my mind for years.
Humble. Bright.
Social. Funny.
Polite. Conformist.
Relentlessly chastised by secondary school for being “too quiet.”
Coping or at least appearing to.

I kept asking myself:
Is it just a phase?
Is it just personality?

Eventually I spoke to a GP.
Told him everything.

And he said something I’ll never forget:
“If you’ve got a gut instinct, I’ve never known a mother get it wrong.”

Then he gave me three options:

1. Don’t get him diagnosed and he’ll never know what his blind spots are
2. Get him diagnosed and he can still choose to ignore them
3. Get him diagnosed and give him the chance to understand those blind spots and learn how to thrive

I couldn’t un-hear that.
And I couldn’t not act on it.

We went ahead with the diagnosis.
And yes, it gave us understanding.
Language.
Clarity.

But in school?

It changed nothing.

He was now officially autistic.
But still considered “low support needs.”
Because he didn’t appear to have any issues.
Hated making a fuss.
Avoided drawing attention.

He just quietly drowned in silence.

Information was literal.
Nuance didn’t land.
He couldn’t ask for help with anything he didn’t understand.

But he could drop a dry one-liner, just enough to make teachers think he was ok.

His answer to every “How are you?”
“Fine.”

And in the school system, that gets read as:
No support needed.

With sixth form comes independence. All correspondence now goes directly to the student, great if they can communicate, a complete disaster if they can’t. With no support in place, we missed countless deadlines, faced last-minute assignments, and had no idea what was happening,  what he was managing, missing, or masking.

Then came university.
And with it, actual support.

In the UK, students with an autism diagnosis are eligible for something called Disabled Students’ Allowance (DSA).
It’s a government-funded assessment that looks at what support a student might need, academically and day-to-day.

We had Harry’s assessment just before term started.

First question they asked him:
“Harry, how does your autism affect you?”

He shrugged.
“I don’t think it does. Everyone else thinks it does though.”

Classic Harry.
Oblivious to his blind spots because to him, the way he operates is his normal.

Then they asked:
“Why don’t you communicate more?”

His answer made my heart ache:
“I don’t choose not to. I just can’t. And that’s seriously frustrating.”

They typed up the entire conversation.
Ran it by us.
Sent it to his chosen universities.

And off the back of that, he now has:

• A support worker for his studies
• Another for everyday life
• Specialist software to help him stay organised
• A clear plan for when things get hard

Nothing revolutionary.
Just the kind of help he’s always needed, finally delivered.

Will he make it through university?
We don’t know.

But for the first time, it feels like he has a chance.

That’s what frustrates me.

We do have systems that work, they just show up too late.
He needed this support at 13, not 18.
But schools couldn’t see past “bright, polite, and fine.”

I’m pleased we pushed for a diagnosis.
Grateful we trusted our gut.
Lucky we found a wise teacher and GP who really listened.

Because if we hadn’t he wouldn’t be at university now.

So if your child’s doing “fine” on the outside but falling apart underneath...

A diagnosis isn’t a label.
It’s a doorway.

And while the school system might miss it,
university, the world beyond, even employers,
they’re finally starting to get it.

They see the detail.
The honesty.
The different way of thinking.

Not as deficits.
But as the strengths that they actually are.

There is light at the end of the tunnel.
But only if you can survive the chapter before.