I bought the Australian Women’s Weekly (NZ edition) today. Not my regular magazine purchase – my more usual Thursday indulgence is the new New Scientist.
I had a special reason to get the AWW (NZ) – our friends Belinda and Karl, and their son Harry, feature on pages 108 – 109. The AWW (Australian edition) has an article on autism in Australia; Belinda and Karl and Harry are the local colour in the NZ edition.
Harry has autism. Full-scale autism – not the more mild, and less easily detected, Aspergers Syndrome. Harry’s autism was identified very early on, when he was about 16 months old. Aspergers is often not identified until much later, because the indicators are much more subtle.
He’s a fantastic kid, despite the evident behavioural difficulties. He’s cuddly with his parents, he responds to direct conversation, he participates in games. I have seen him play very successfully with my two younger daughters, with all three of them totally focused on a model ship and all the little pieces and ‘men’ that could be moved about on it. On the same visit, when we all went off to visit Kelly Tarlton’s, he was very keen to sit with my elder daughter – he thought she was lovely (she is, of course). He responds to people, he’s talkative, and more than just talkative, he’s communicative.
And like both his parents, he’s very, very smart. He’s no legendary idiot savant – he’s just a bright kid, operating through autism.
None of these things have happened by accident. Karl and Belinda worked out very early on that Harry was not in the normal spectrum of behaviour. Once the initial shock passed, they set out to find out more and more about autism, and about how to work with their son. They have worked extraordinarily hard with him, using charts, photos, rewards, punishments (such as no more computer time), written words, endless repetitions of basic behaviours, to help him to learn how to communicate. Their goal is not to change their son, but to help him to be able to function in our society.
They have spend a huge amount of money doing this – around $200,000. Harry is at school now, with a Department of Education funded teacher aide. The particular grant is an Ongoing and Reviewable Resources Scheme grant, known as an ORRS grant.
Here’s the real problem. Because Belinda and Karl have worked so hard with Harry, because they have poured in the time and effort and money now, his behaviour is manageable, to the extent that funding will most likely be withdrawn at the end of 2008. At that stage, the people assessing eligibility for ORRS grants will visit Harry again, assess his behaviour, and decide whether the grant should be renewed. But Belinda and Karl have worked, and continue to work, so hard with Harry that his behaviour is much improved, so he is unlikely to get the grant again. Yet given the nature of autism, which is not ‘curable’, if the funding for a teacher aide is withdrawn, then Harry is likely to be unable to function in a mainstream classroom.
It’s a lose : lose scenario for parents of autistic children, and parents of children with other disabilities. If they spend time and money now, then in future years, instead of getting assistance so that their children can be educated, and become self-supporting citizens, they will have to pay all over again. If they had simply not bothered, then funding for teacher aides would have been available.
This is a real case where a fence at the top of the cliff would save so much grief in future years.
I salute our friends Karl and Belinda. Autism destroys relationships – the main Australian based article in the AWW gives a break-up rate of 87%. Belinda and Karl have been through some very rough times, but they are still together, and still there together for their children. And their son is a lovely lad.