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We have changed our name! Kids on the Spectrum is now called Living on the Spectrum

Practical tips and resources for families awaiting an autism diagnosis – Interview with Anita Aherne

This post has been updated to reflect our new name, new rules around the Mental health care referrals and current links and resources.

I recently had the pleasure of chatting to a group of parents on a live webinar discussing the steps parents can take while waiting for an Autism diagnosis for their child.

While the webinar is no longer available to view, we decided to share some of the key points discussed. We will be hosting another webinar soon, so please join our newsletter to be the first to know when we release the dates.

Practical tips for families while waiting for an autism diagnosis

Q. Who can diagnose Autism?

A diagnosis is usually conducted via multidisciplinary team. And usually starts with your GP. Your GP will often refer you to a paediatrician as the first port of call. Your paediatrician has a choice to diagnose your child, or they may feel further assessment from a psychologist and or speech therapist may be helpful. However, it is not the only pathway.

You may choose to see a child psychologist, psychiatrist or even a speech therapist first. They will then often refer you to the appropriate allied health for further assessment. Often the team will confer and confirm a diagnosis based on the formal assessments.

If your child is under 18, your paediatrician must sign off on the official diagnosis regardless of the pathway.

Q. How can parents find quality and reliable resources?

Parents are bombarded with so much information via social media, tv, newspapers and via word of mouth that it is sometimes difficult to know where to start. My tip here is engaging your community.

I always suggest listening to actually autistic voices. There are many advocates who share information and experiences via social media. I am quite new to TikTok, but it has become a popular source of actually autistic information.

Of course, I am also going to say Living on the Spectrum. We are Australia’s first national autism directory, and we are a free resource. Sharing stories, resources, events and our favourite advocates.

We are neurodivergent ourselves and also parents and cares. We launched in 2019 because we had difficulty in locating reliable information in one location.

And finally, I would say ask other parents and carers. Join a social group, or even a Facebook group. Learning from other parents is a great way to find strategies and information that may also assist your own child.

Q. Is there a faster way to get an autism diagnosis?

I wish the answer was yes. But in reality, there will be a waitlist of between 6 months and 2 years depending on where you are located for private and public appointments. If you live in regional Australia the waitlist could be as long as 3 years. You can view public assessment locations here.

Do not forget to add your details to multiple waitlists. Explore both private and the public options for wait times.

Ensure you also phone regularly to enquire how fast the waitlist is moving. If practical, let the practice know that you are happy to take last-minute cancellation appointments. This is a great way to ensure an earlier appointment date.

And, if you can travel, add your details to the waitlist beyond your immediate location. It isn’t an issue to cancel should an earlier appointment become available. It is far easier to cancel than get added to existing waitlists and it usually does not incur any fees if the appointment is cancelled early enough.

Since the beginning of the Pandemic the Government has introduced Telehealth appointments. This allows appointments to be held online rather than in person. We suggest you inquire about Telehealth when adding your name to waitlists. Telehealth offers the same diagnostic process as in person appointments; however, it is offered online. This may be a faster option to gaining an appointment.

Q. Can school make supports available even without a formal autism diagnosis?

This depends on each school. Many schools are pretty open to making support available. However a formal diagnosis is often needed for funding for student aids in the classroom. Most schools should be open to implementing individual learning plans for students, as this helps teachers best support your child.

Should your child be experiencing school refusal, you can discuss with the school the best ways to encourage learning in a safe and supported environment. In some cases, reduced school hours may be able to be negotiated. School excursions can also be negotiated if your child struggles with this external engagement. We suggest engaging a school advocate to assist you with negotiating with your child’s school.

If school refusal is affecting your child’s mental health, we suggest exploring other schooling options such as home school or independent and alternative schools. We recently offered a webinar on school refusal, if you would like to learn when our next school refusal webinar will be held then send us an email or join our newsletter.

You can also visit our directory to look for advocates in your area.

Q. Can I get help for my child’s mental health while waiting for an autism diagnosis?

You can actually access 10 free or heavily subsidise Medicare appointments to a psychologist through a referral from your GP. It is a Mental health plan via the Better Access initiative. You will need to visit your GP to get this referral.

Your GP or the clinic nurse will fill out a questionnaire and establish if you qualify or the plan. Once you have this you may book a psychologist or allied health provider to assist you your child with any mental health challenges. You may be placed on a waitlist, however there are some things you can do to ensure a faster appointment.

As above, you can put your name down on multiple waitlists, ensure you phone the practice regularly to ask about anticipated availability of appointments, and make sure you let them know if you are available for last minute cancelations.

You might also want to utilise these mental health services,

Q. What do I tell friends and family while awaiting an autism diagnosis?

Share what you feel comfortable sharing, no more and no less. You are under no obligation to justify your child’s behaviour, or how you choose to support your child.

It may be helpful to share the information with your child’s school to start early support. Especially if you find your child is struggling to attend school or complete schoolwork.

You should not be ashamed of seeking an autism diagnosis for your child however we appreciate it may be a bit overwhelming. Move at your own pace and share information if you feel it relevant of helpful. Having family support can help you navigate the huge amount of information being learnt about your child and how best to support them.

Learning from the community who has experienced this before may be helpful when navigating your own emotions and wellbeing as a parent and carer.

Q. Is there support for myself as a parent?

Yes, there is. Your child does not need a formal diagnose to access these carer supports. So while you are waiting for and autism diagnosis you can visit Carers Australia to learn about ways you can access support and information. They offer free webinars and personalised supports should you need assistance. You can call them or visit their website. Carer Gateway is also a federally funded carer support service for carers, they also have a free telephone service.

There are also many independent carer support organisations that may be able to support you. You can view them here.

Q. Do I need a formal diagnosis for early intervention or supports?

For children aged 0-6 years of age, a diagnosis is not required to access early intervention services privately or through the NDIS.


Early Intervention can be vital in setting up supports and understanding your child’s support needs.

For older children you do not need a formal diagnosis to begin supports with allied health. In fact, an Occupational therapist can be very helpful in identifying ways to support your child. They may provide support suggestions for school and daily living skills.

You might also choose to enrol your child is activities that support autistic children, this could be autistic social groups or mentoring, either online or in person. There are a wide range of autistic led social groups in our directory.

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