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Thursday, 2 May 2013

Reading a family's journey through autism can help understand why the NDIS is necessary

Anthony Macris - whose son Alex started to display signs of autism about a decade ago; Alex would go on to develop a severe form of autism requiring intense behavioural therapy to mitigate - is one of the lucky ones. Even though he had to forgo work on his groundbreaking second novel, Great Western Highway: A Love Story, so that it would only be published recently, a full 16 years after his first novel came out, Macris, who has four university degrees, was able to make the radical alterations to his life that Alex's condition necessitated; he became a full-time university teacher.

But when the Coalition's Joe Hockey says that the NDIS is not "the right solution in this environment", I think of Tony and all the sacrifices that he and his wife - who gave up dancing to retrain as a behavioural therapist so that Alex would have the care the parents believed he needed - have made because of the lack of government help for parents of children with a disability. But even more, I think of those less fortunate than the resourceful and talented Macris.

You can read the story of how Alex developed autism by buying Macris' second book - the one that got in the way of his second novel - When Horse Became Saw (2011), a creative non-fiction account of the journey the family made when the unthinkable happened, and when the loving parents gradually adapted to the new reality, and gave up the lives they had designed for themselves to dedicate themselves to caring for Alex. It's a gripping read. The first indications that something was wrong appear in a way that will have you on the edge of your seat. Why the silences? Why the rages? When your child deviates from what's normal, you pay attention, and Macris has written down in brilliant detail how puzzlement turned to despair, despair to anger - why was there no government support for them? - and from anger to an adamantine resolve.

"I worry about him all the time," Macris told me when I last saw him; we took in an French photography exhibition at the Art Gallery of New South Wales one sunny weekday when I had gone down to Sydney. The kaleidoscopic delight of the photography of Eugene Atget was not enough to distract Macris from the constant concern he feels for Alex. The worry never stops, but there are things that can be done to make the journey easier, and adequate government funding for families weighed down by the additional burden that a physical or mental disability in a child imposes on them, is one thing that Australia, as a caring and engaged society, can easily do.

The ALP has designed a plan to help affected families, and they have now specified how it can be paid for, but the legislation required to bring that measure into law has been delayed past the life of the current Parliament. If the Coalition - who supported the plan and voted it into law alongside the ALP - want to make the NDIS an election issue, then Australians owe it to Macris and, even more, to those families who are less resilient and resourceful than his, to make sure they make their views clear. And if you want to understand what happens to disabled children who are not adequately cared for: read the book. If you want to see the devastation that the arrival of a mental disability brings to the parents of the afflicted child: read the book. It's not just a true account, of course, it's also a wonderful book, written by one of Australia's most talented and imaginative authors.

UPDATE Thursday 2pm: The Sydney Morning Herald has run a story time-stamped 1.10pm saying that Julia Gillard will go to Parliament to pass legislation for the NDIS levy before the election, after Tony Abbott, Opposition leader, said he would support it.

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