“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.

When a family friend’s son was diagnosed with autism Professor Andrew Whitehouse offered them respite but it left him a changed man. 

“It changed my life,” he says. “I saw the family’s realisation that their child was developing differently to other kids, the difficulty they had in obtaining a diagnosis, their endless fight to receive the proper services, and the enduring love they had for their child.”

July 1, 2014 Dan Harrison

The minister responsible for the National Disability Insurance Scheme has urged families with concerns about how the scheme is operating to make their views known.

The results can be devastating. Not being able to keep up with the teasing banter that often takes place among groups of young people can make the social world a very daunting place for children with autism. Being at odds with their peer group can lead to social isolation, rejection, and a lack of the supportive friendships that can protect against bullying.