MARK COLVIN: Many aspects of what's now called autism spectrum disorder remain mysterious, but a new study from the University of Queensland says the number of people with the disorder is neither rising nor falling.

The university team crunched the numbers on a wide range of research data from 1990 to 2010. They say that around the world one person in 132 has some level of autism spectrum disorder. They say their analysis of the figures shows that that hasn't changed since 1990.

Autism experts are calling for changes in diagnostic testing, saying the current approach is failing to identify the true number of females with the disorder.

They say a massive imbalance in the number of autism diagnoses between the sexes could be attributed to more subtle symptoms in females that are either dismissed by clinicians, or undetected by current testing, which focuses on signs associated with male behaviour.

The Join Standing Committee on the National Disability Insurance Sceme released its progress report (see link here 10Mb PDF). The report is about the first 12 months in the initial "trial" sites.

In relation to autism, the report says:

Larissa Nicholson, Reporter

Tim Chan has severe autism and cannot speak or write. He uses an electronic voice-output device to communicate and write poetry. Photo: Getty/Paul Jeffers

“TALK to families” is the plea to experts reviewing how Autism is treated under the National Disability Insurance Scheme from the Bonnyrigg Heights mother of two autistic children.

Grace Fava, who is also the Autism Advisory and Support Services president, is concerned the real picture of life for people on the autism spectrum and their families is being lost and the only way to overcome this is true consultation.

“Don’t just talk to families who have high functioning kids, talk to those who have to relinquish their kids,” she said.

The federal government’s decision to abandon the Gonski funding model was a huge blow to students with autism, many of whom already find school extremely challenging, academics speaking at a major conference in Sydney have said.

Macquarie University Special Education Centre director Mark Carter said funding was a critical and ongoing challenge for the sector, which was ''clearly looking like it’s going to be under strain with the current state and federal budget issues''.

By MADDIE WINES July 11, 2014

LEAD: Rebecca Kelly and former governor-general Quentin Bryce at the Australian Human Rights Commission’s Twenty Years Twenty Stories launch last year.

By Charlotte King

A study has been released suggesting the pressures being faced by regional and rural families caring for a child with autism are greater than those in metropolitan areas. 

Carers and their families are fundamental to the quality of life for people living with autism, yet the far-reaching impact of this job can be overlooked.