What We Did While Waiting for Autism Diagnosis

After autism was first mentioned, we still had to wait for the formal diagnosis process.

That waiting period felt confusing. Part of us wanted answers quickly, but we also knew that appointments, assessments, and therapy services could take time.

At first, it felt like we were just waiting. But slowly, we realised that waiting for diagnosis did not mean we had to do nothing.

Here is what helped us during that time.

A gentle reminder

Every family's journey is different. What worked for us may not work for everyone, but we hope our experience can give you ideas and encouragement while you wait.

What we did during the waiting period

1 We started reading more resources

We started reading more resources online to understand autism better. At the beginning, everything felt overwhelming. There were so many terms we had never heard before - sensory needs, communication milestones, repetitive play, early intervention, occupational therapy, speech therapy. But the more we read, the more we started to understand our son differently.

2 We paid more attention to sensory-seeking behaviours

We began paying more attention to his sensory-seeking behaviours. We started noticing what upset him, what calmed him, what sounds bothered him, what textures he avoided, and what activities he kept going back to.

3 We applied early for support

The waitlist for services was quite long. We were told it could take around four months before we could access occupational therapy and speech therapy, so we tried to apply as early as possible.

4 We explored what support was available in Australia

In Australia, Medicare may allow access to a certain number of therapy sessions through eligible care plans or referrals. We also explored early intervention funding options so that we could start speech therapy and occupational therapy as soon as possible.

5 We changed our mindset

Before, we thought he was just like this or that he would eventually grow out of the things he did differently. We started trying to understand why he was doing it and how we could support him.

6 We observed, wrote and prepared

We noted down behaviours, patterns, triggers and things that helped him. This also helped when we met with professionals later.

Looking back, I am glad we did not simply wait for the diagnosis letter before taking action. We read. We observed. We asked questions. We applied early for support. We started changing the way we understood our son.

If you are currently waiting for an autism assessment, I know how hard that waiting period can feel. But waiting does not mean doing nothing. You can start learning, observing, speaking with professionals, writing down what you notice, and supporting your child with more understanding.

Waiting is hard, but you're not alone

For us, the biggest change during that time was not just applying for therapy. It was changing our mindset. We stopped seeing our son's behaviours as random or difficult, and started trying to understand what he needed from us.