Mother's heartfelt plea after doctors take four years to diagnose son's autism

Hanna Colley's son Beau, now nine years old, had just started kindergarten in 2020 when he began to show signs of ADHD.

The school raised concerns that he "wasn't coping" and suggested the family get an assessment done.

But due to a shortage of publicly available paediatricians, the Bathurst family were told they would have to wait between nine and 11 months to see a GP.

"We were constantly calling to see if there had been any cancellations," Mrs Colley said.

"At school it was getting to the point where he was being sent to the principal's office four times a day because he was so disruptive.

"It was pretty bad. He wasn't learning anything, wasn't engaging in the classroom environment."

With a lengthy waiting period ahead of them, Mrs Colley was advised to get as many assessments done to help speed up the process once a GP finally became available.

They were finally able to see a doctor in October that same year where Beau was diagnosed with ADHD.

"At the beginning, when people don't understand that a child is neurodivergent, they automatically treat them like a naughty child rather than looking outside the box," Mrs Colley said.

Little did the family know this was only just the beginning for Beau.

Signs of autism emerged and with the family unable to afford the thousands of dollars needed for another assessment, they were referred to children's health provider Royal Far West.

After once again being put on a waiting list, they were finally able to start the diagnosis process in 2021.

But because the Covid lockdowns were still in affect, all of the pre-assessments were done either via Zoom or phone calls.

"The difficulty of doing it over Zoom is they weren't able to see him face-to-face and get a sense of that real life element, something that would still be difficult now for people who aren't able to travel," Mrs Colley said.

State-wide lockdowns were lifted at the end of 2021 and a year later, Mrs Colley and her son were able to visit Royal Far West's Manly site for a full week.

But in-between the Zoom assessments and actually visiting the doctors in person, Beau was diagnosed with a degenerative bone disease in his left hip called Perthes disease.

The pain caused by this, coupled with a lack of in-person meetings led Mrs Colley to believe the initial diagnosis that her son did not have autism, was wrong.

Royal Far West agreed and scheduled for another assessment and the process started all over again.

Then in January 2024, four years after first being sent for a referral, Beau was diagnosed with level three autism. This is characterised by severe challenges in social communication as well as extremely inflexible behaviour.

"The understanding and the care of the Royal Far West team, it has helped us get to this point where we finally have an answer," Mrs Colley said.

The existing Royal Far West clinic in Manly has been co-funded by NSW Health for more than two decades. Now, the organisation is calling on the NSW government to provide $2 million per annum between 2025 and 2027 for two new rural paediatric assessment clinics, in Dubbo and Wagga Wagga.

Mrs Colley, who needs to drive to Orange for some of her son's medical appointments, believes having more services in regional NSW is a must.

"These children may not appear to the general public as being any different, but they are actually experiencing massive difficulties internally," she added.

"Four years of trying to work out why my son behaves in a certain way and not having the local support is really difficult because we feel really isolated.

"We need to be able to access something faster without having to pay an exorbitant amount of money."

NSW health minister Ryan Park told ACM he recognised the challenges many regional families faced on getting an appointment with a paediatrician, but did not commit to Royal Far West's proposal.