Merry Christmas from the authors of ‘The Australian Autism Handbook’

by Benison O'Reilly on Thursday, December 24th, 2009

Seana is down the coast with her family and hopefully nowhere near a computer screen, so I will pass on Christmas greetings to our readers on her behalf.

I was planning a weightier contribution today, on the latest CDC prevalence data from the US, but I’ve decided that can wait until next week.

One of the many pleasures I’ve had this Christmas is the sight of the attractively decorated Christmas tree in my living room, surrounded by brightly wrapped presents.  When Joe was younger he would constantly remove decorations from the tree, attracted by their colour and shine. He’s always had a few visual stims. As a consequence our tree always looked like it had been decorated by someone who had consumed too much of the Christmas punch!  We also couldn’t put wrapped Christmas presents under the tree, because young Joe assumed all gifts were for him and would rip the paper off them just as quickly as I could wrap them.

Now the attraction of Christmas decorations has passed (although not completely the visual stims) and he can read the cards on the presents and know they are not for him.  However, I got him to help to wrap the presents for his younger cousins, so that he would know they weren’t toys that would interest him, just in case!

Progress with a child on the autism spectrum can be measured in many ways.

Anyway, we hope that you have a wonderful Christmas with your relative with an ASD and that 2010 is a good year for you all.

Best wishes,

Benison and Seana

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Rolling Out the Autism Specific Early Learning and Care Centres

by Seana Smith on Friday, December 18th, 2009

2010 will see the start of something new for Australia, government-funded full-time child care centres for children with autism spectrum disorders.  These will be a real boon for working parents and for families with lots of children especially.

There are six centres opening next year which will provide places for 120 children.  So this is, like the Helping Children with Autism package, a good start… but just a start in the campaign to provide expert, intensive and proven early intervention programs for every single Australian child with an ASD.

To read all about the centres and find out where they all are, click below:

http://www.fahcsia.gov.au/sa/disability/progserv/people/HelpingChildrenWithAutism/Pages/autism_specific_qanda.aspx#3

As ever, it’s a great idea to get your name on a waiting list early, here’s a link to a pdf with info on how to get on the waiting list for the SW Sydney Centre:

http://www.ku.com.au/resources/other/Marcia%20Burgess%20ASELCC%20Centre%20Brochure.pdf

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On GPs and autism

by Benison O'Reilly on Thursday, December 10th, 2009

This quote early in the Australian Autism Handbook reflects an all too common experience:

I regret wasting a year listening to doctors who kept telling me that my son was “delayed” but would “catch up”. I should have arranged a full assessment as soon as I realised something was wrong.

We all know that kids with ASD are not going to ‘catch up’, at least not without a lot of intervention. Parents have the right to feel aggrieved when important months are lost as a consequence of false reassurance, but unfortunately an experience like this can go on to colour (and not in a good way) the ongoing relationship between an ASD family and the mainstream medical world.

Usually the main culprit identified in these stories is the family general practitioner. I happen to know a fair bit about GPs, as I’m married to one. I also happen to know that GPs receive virtually no education in ASDs.  It’s thus unsurprising that many of them get it wrong, especially when presented with a child displaying the sometimes subtle symptoms of PPD-NOS or Asperger’s.

Still, something needs to change, and the medical community is aware of it. A 2008 survey in the UK found that 80% of GPs believed they needed additional guidance and training to help them identify and manage ASDs better, and it’s likely an Australian survey would produce similar results.

Keen to bridge the gap between parents and his medical colleagues, my husband recently developed a series of learning objectives on ASDs for GPs. He presented his ideas in a paper at the Asia Pacific Autism Conference in August, provoking some interest from the specialist medical media.   As a consequence, a feature article appeared in the November 11 issue of Australian Doctor, the writer, Jane McCredie, doing an exemplary job of summing up the issues surrounding the GP and parent divide.  Unfortunately the article is not accessible to the general public but I have been give permission to quote from it.

Associate Professor Cheryl Dissanayake, Director of La Trobe University’s Olga Tennison Autism Research Centre, was interviewed for the piece.  She agrees that doctors need to act sooner:

“Six months is a long time in the life of a developing baby…That’s where we have to empower both parents and primary care professionals, if they have concerns, to act on them.”
“It shouldn’t matter if it’s autism or not autism. If the child’s not developing typically we need to know about that, act and get that child into service.”

As the article makes clear, no one is expecting GPs to become experts in ASDs. That’s not feasible, nor even desirable.

But it is reasonable to expect that GPs be aware that any child presenting with any of the red flags:

*lack of babbling  or pointing  by 12 months;

• *no sharing of interest in objects or activities with another person;
•  
• *no single words by 16 months, or no two-word (non-echoed) phrases by 24 months; or
•  
• *any loss of language or social skills at any age;
• should be referred  immediately for specialist assessment.

In the ideal world of the future GPs could also learn to actively screen toddler for ASD symptoms, and become genuine advocates for families affected by ASD: helping them to access the full range of services available under Medicare; directing them to reliable information sources, and providing emotional and practical support to struggling parents and siblings.

I hope lots of medicos read their Australian Doctor  on November 11.

Under the auspices of the training organisation, GP Synergy, my husband recently ran two small ASD training seminars for GPs: one in Sydney and one in regional NSW, which were enthusiastically received by all participants. It’s a drop in the ocean but there is no reason why other general practice training organisations can’t follow suit.

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