The Autism Association of Australia has always been about families.

When I first became involved in the autism community 25 years ago, my world was understandably pretty small. It was about my son Jack, what he needed, what we needed to learn as his parents, and how we could give him the best possible start in life.

Back then, I was very focused on little children. Early diagnosis. Early intervention. School. Getting the right support around families as early as possible. And I still believe passionately in all of those things.

But here’s the newsflash that nobody really tells you when your child is diagnosed: your children are adults for WAY more years than they are small children.

Jack is an adult now. And like every parent, my perspective has changed as he has grown up.

The support needs of autistic people and their families don’t conveniently end at 18. They change. Sometimes they become easier, sometimes they become harder, and sometimes a whole new set of challenges appear that you hadn't even thought about when you were worrying about getting through kindergarten.

This is a journey, not a sprint.

Over the past 25 years, I’ve seen enormous change in autism in Australia. We have made some very significant improvements and reforms. There is greater awareness, better understanding and, in many areas, better support.

But there are still very real challenges for many autistic Australians and their families.

And that is why we need to keep making sure families are heard, loudly and clearly, when governments, services and organisations make decisions that affect their lives.

We need good evidence about what families are actually experiencing. What is working? What isn’t? Where are the gaps? What are parents worried about? And how does that change as autistic children become teenagers and then adults?

That’s why this year we have partnered with our colleagues at CliniKids, part of The Kids Research Institute Australia, and the University of Western Australia to run the 2026 National Autism Parent and Caregiver Survey. It is open to parents and primary caregivers of autistic children, young people and adults, and the findings will be published early in the new year.

I know, I know. Who has 30 minutes to sit down and fill in a survey?

I’m asking you to find those minutes.

Because every family who completes this survey adds their experience to the evidence we can take to governments and decision makers. The survey is completely anonymous, and it closes on 5 October.

So grab a cup of tea (or a glass of wine), find somewhere comfortable and tell us what life actually looks like for your family.

Help us to help our community.

We need to keep working together, relentlessly, to make life, and Australia, better for autistic Australians and their families.

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Nic

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