Tanya Stiller's second son Riley was diagnosed with autism at the age of eight, four years after she first sought answers about his condition.
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Having been told by a psychologist in the public system that Riley was not on the spectrum when he was four, the Bonner mother dealt with several years of uncertainty and questioning her own judgment before paying for a private system assessment.
"My first child was diagnosed, and so I began to think that because he was diagnosed you might see something that's not there (in Riley)," she said.
"All of these doubts get into your mind."
Riley was diagnosed, but was by then too old to access early intervention education or related federal government funding.
His older brother and younger sister, who are on a more severe part of the spectrum, were diagnosed at four, both through the private system.
The disparity in diagnosis numbers and ages across different jurisdictions, health systems and the urban-rural divide are examined in an Autism Co-operative Research Centre report released this week.
The Department of Social Services-commissioned report, gathered from the results of a questionnaire by health professionals, found the median waiting list time for an assessment across the country was six weeks, with longer periods in the public system.
It also found waiting times were twice as long in regional areas when compared with metropolitan clinics, while the cost of assessments varied across the country.
Autism CRC director Professor Andrew Whitehouse said the level of variation was an "elephant in the room", with the report formalising evidence of its existence.
"We can't sugar-coat this, it is very concerning," he said.
"Every healthcare professional wants to see the best for their patients, but right at the time when parents need accuracy, they need efficiency, they need certainty, we in the autism field are not providing what they need."
Professor Whitehouse said the difference in waiting times between regional areas and major cities was particularly worrying.
"We know that early intervention is absolutely crucial for autism, and if we are delaying a diagnosis for logistical reasons, as in the case of rural and remote living, it's difficult to come to any other conclusion other than these families are being disadvantaged," he said.
Only two ACT professionals, both psychologists in the public system, took part in the questionnaire, but the Australian Bureau of Statistics found 1100 Canberrans, or about 0.3 per cent of the population, were on the spectrum in 2012.
The report found about 82 per cent of the health professionals surveyed nationwide had been visited by somebody who had not been diagnosed with autism spectrum disorder at a prior assessment.
Of those people, a median of 50 per cent received a diagnosis from the assessment.
Autism Aspergers Advocacy Australia's Bob Buckley, who is based in Canberra, said booking more than one assessment was a way of sourcing a second opinion.
"There's a long history of underdiagnosis and you have a low diagnosis rate in the ACT," he said.
"If you go to one person and they say your child doesn't have autism, you'd want a second opinion."
