(Autism, Advocacy & Invisible Work) 

Recently, I rewrote my carer’s statements to support the continuation of NDIS funding for both of my autistic children.
It’s something many autism parents and carers know far too well,  translating your family’s lived experience into language that systems will accept as “evidence.” 

And honestly? Reading it back to myself was confronting 💔 

A carer’s statement doesn’t ask about your child’s humour.
Their passions.
Their kindness.
Their brilliance.
Their beautifully different way of seeing the world 🌍✨ 

Instead, it asks you to focus on the hardest parts.
The shutdowns.
The meltdowns.
The burnout.
The anxiety.
The sensory overwhelm.
The support needs that must be proven again and again. 

At first, I felt guilty writing it that way. 

Because not every day is a crisis.
There are good days. There is joy. There is connection. There is laughter. There are moments of deep pride 💞 

But as I sat with it, I realised something powerful. 

The reason we don’t reach “worst day” levels more often is because of the enormous amount of support, structure, and accommodation in place every single day. 

The carefully designed routines that protect nervous systems 🧠
The sensory supports we never leave home without 🎧
The school adjustments constantly negotiated 📝
The recovery time after social demands
The advocacy emails that never seem to end 📧
The hyper-awareness of environments
The emotional regulation I hold for everyone before I touch my own 

That statement didn’t exaggerate our life.
It revealed it. 

It showed me how much invisible labour goes into making the world accessible for my autistic children in a world that still largely isn’t built for them. 

The supports aren’t there because things are falling apart.
They are there because they are preventing things from falling apart 🫶 

And I know we’re not alone in this. 

So many autistic families carry this same tension:
Loving our children deeply while having to document their struggles.
Celebrating their strengths while having to justify their support needs. 

If you’re walking this path too, please hear this: 

You are not exaggerating.
You are not failing.
You are not being negative about your child.
You are advocating in a system that demands proof of struggle before offering support. 

It’s not hard because you’re doing it wrong.
It’s hard because autism support in a neurotypical world requires relentless effort. 

And every bit of that effort matters 🤍 

Writing a Carer Statement for NDIS ✍️

A Carer (or Impact) Statement is a powerful way to show how disability affects daily life for the person you support and your whole family 👨‍👩‍👧‍👦. While it’s not compulsory, it can significantly strengthen an NDIS application by giving planners a real, practical picture of support needs.

Writing it can feel confronting 😔, but honesty matters. You’re not complaining you’re explaining your reality 💬. Describe the hardest days so the true level of support required is understood.

👉 MyCareSpace created a step-by-step guide with a free template link below

MyCareSpace Carer Statement Resource 🔗

By Kylie Gardner

The A List 💛