Practical tips for autism families navigating healthcare systems

The Australian healthcare system can feel like it wasn't built for your family. Long waits, sensory chaos, clinicians who don't quite get it. And that’s all before you've even explained why you're there. 

But there are things you can do right now that make a real difference.

We spoke with Dr James Best, award-winning GP, child development specialist, and father of an autistic son, and Kathrine Peereboom, mother to three profoundly autistic sons and national disability advocate. Between decades of professional expertise and hard-won lived experience, here's what they want autism families to know.

Watch the full webinar here.

Build your family's medical profile

Before the next appointment, the next procedure, or the next unexpected trip to Emergency, build a concise medical profile for your autistic loved one. Think of it as a document you can hand to any clinician, anywhere, that does the talking for you when you're already stretched thin.

Keep it brief and cover the essentials:

• Diagnosis and any co-occurring conditions
• Current medications
• Top three things clinicians must understand about your loved one
• Behaviour triggers and early warning signs
• De-escalation strategies that work
• Sensory sensitivities

Bullet points over paragraphs. One page is better than five.

If your GP can add a summary to your loved one's My Health Record, even better. In an emergency, you can simply tell the nurse or doctor, "My GP has put something there, please take a look."

Remember to update your document, or get the GP to update My Health Record regularly. When the moment comes, you won't have the headspace to remember everything. This profile does it for you.

"I create what I call a 'bible' - a profile on each of my children that I update on a regular basis. When you do have a situation that could be an emergency, you don't want to be focusing at that time on 'what do I have to remember?' So if you've already done it, you can just bring it to the appointment." - Kathrine Peereboom

Know what to expect from your GP and what to ask for

Respect is non-negotiable. If your GP isn't treating you and your loved one with respect, find one who will.

The right GP works with you, not just around the illness or the immediate concern. That means longer appointments when needed, flexible waiting arrangements, and genuinely engaging with your autistic family member even when they're not making eye contact or responding verbally. Dr Best is direct with other clinicians on this, “...if a patient is interacting with you less because of their autism, you should be trying to interact with them more.”

When you find a GP who gets it, use the relationship fully. Book a "well visit" to help your loved one become more familiar with the environment, the equipment, and the person. It can make a real difference when situations are urgent, or when they’re in pain and overwhelmed.

Emergency Departments - prepare for the reality

Emergency Departments are the most sensory-intensive environment in the healthcare system. Long waits are the norm, staff are under enormous pressure, and even good clinicians can lose sight of the fact that a six-hour wait can be more difficult for an autistic person.

So, go in with a plan:

• Bring your medical profile (laminated if you can)
• Have a short, calm script ready. For example, "I know everyone's waiting, but if my child has to wait, things will escalate, and that's not anyone's fault. Can we talk about options?"
• Prepare yourself emotionally. It may not go the way it should. Staying calm helps, especially as your loved one will be attuned to your distress.
• Know your options. A telehealth service or GP home visit may be the right call for non-emergency situations.

Red flags you should never ignore

You are the expert on your loved one. Watch for language that dismisses or diminishes. If a clinician frames your family member as a problem, a burden, or an inconvenience, call it out.

Dr Best recommends staying calm, being assertive, and saying it plainly, “It's not their fault they're responding this way. Can you please treat them with respect?"

You don't have to accept disrespect to get the care you came for.

If speaking up feels impossible because of your own disability, language barriers, or because you're already running on empty, lean on your network. A support worker, coordinator, or trusted advocate can be your voice when you need one.

What to say when you see red flags from a doctor or allied health professional?

Save these phrases in the notes section on your phone, so you have the words to advocate for yourself or your loved one.

It's not his/her/their fault they're behaving this way, it's because of their individual needs. Can you please treat them with respect?

I understand everyone has to wait, but if my child waits this long, things will escalate beyond their control. It's not misbehaviour. Can we work out a plan?

We are the experts on our loved one. Can we talk about their specific needs before we begin?

This environment is very distressing. Is there somewhere quieter we can wait?

I have a medical summary here that explains their diagnosis, triggers and needs. Can you please take a moment to read it?

Complex care and dental - coordinate everything you can

For families in the profound autism cohort, even a routine dental clean can require a general anaesthetic. If that's your reality, use every moment of access.

When your loved one is already under a general anaesthetic, coordinate with all relevant clinicians (GP, paediatrician, dietitian, etc) to get as much done safely as possible at once. It's not ideal, but it's practical.

At Westmead Hospital, NSW, One-Stop Shop clinic delivers complex care coordination for eligible adults. The Primary Health Networks program is also worth exploring, regardless of your state.

Unfortunately, the system is still siloed. A good GP who acts as a genuine coordinator, connecting the dots between specialists, hospitals, and allied health, can make a real difference.

One last thing

There is genuine progress happening in the healthcare system. Quiet rooms in medical centres, better awareness in emergency departments, and the passionate, caring clinicians who've been trained to do better. Change is happening!

But progress doesn’t mean you can wait for the system to catch up to your family. In the meantime, build your medical profile. Find your network. And use your voice, because you know your loved one in ways that no clinician ever will. Take that into every room with you.

"You know your loved one best. Find your voice, and if you're not confident in that, write the email. Find somebody else in your network that can speak for you." - Kathrine Peereboom

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