From a Mom in Melbourne

The following is a comment from the “Redefining Autism” post written by an Australian mom with two children on the spectrum.

“It is what our education department in Victoria does.  They make it so hard for children to qualify under their own made up criteria for what they will actually fund as being autism.  One of those being a severe language delay.  Problem solved, then they just don’t count all the students with an actual diagnosis of autism only those they will fund at school.  They also don’t count the children in my region ( my own 2 included ) who have severe autism, but attend schools for the intellectually disabled.  If you attend such a school you are funded as intellectually disabled and not autistic and so they do not count you in their figures as autistic, never mind where we live, unlike the rest of the City, there are no autism specific schools beyond the age of 9.  Such schools are zoned, so even if we could travel there we wouldn’t be accepted as the schools are so full.  If you can’t survive in a mainstream school with minimal support you wind up in a special school for the intellectually disabled or homeschooled.

We just had a review of autism education provisions for our region, which I was involved in instigating and the Education Department again only released the figures of those students who recieve funding for autism.  It is wicked, given that this region of Melbourne has the highest incidence of autism, but we will never know just how frighteningly high because they only count some students not all those with a medical diagnosis.  One local politician described it as a tsunami.

I read the article you mentioned a few days ago and it is just more of the same.  There is an epidemic – I can see it.  My husband has work mates who have children with ASD, we have friends we knew before they had kids who now also have children with autism, we have a neighbourhood full of kids with ASD, wherever I go – restaurants, swimming pools, shopping, the library – I see children who are obviously autistic.  They can call it what they want, but it isn’t going away.”

Emma was diagnosed with PDD-NOS  (Pervasive Developmental Disorder – Not Otherwise Specified) at the age of two years and nine months.   Given the new criteria proposed, Emma would not have been eligible for the services she was given, which included speech therapy, occupational therapy and Applied Behavioral Analysis (ABA) as well as Verbal Behavior  (VB).  While I take issue with the standard form of early intervention – ABA & VB – as it did not help Emma, we were able to find an early intervention therapist versed in Stanley Greenspan’s DIR (Developmental, Individual-difference, Relationship-based) model, which was at least a bit more helpful.  I have no idea whether Dr. Marion Blank’s program for children would have been covered had we known about it, but it might have been.  Had we begun Emma on Dr. Blank’s program when she was first diagnosed, we would undoubtedly have a child who was now mainstreamed, saving the state and ourselves an enormous amount of money, not to mention heartache, stress and emotional trauma (hers, as well as ours).  I say this with confidence because now, at the age of ten, Emma has made more progress in the past year that we have been working with Dr. Blank than she has in six or even seven years put together.

My distress is two-fold regarding this new proposed criteria and the ongoing discussion regarding autism.  The first is that shifting numbers will not change the fact that the rate of autism has far outpaced our ability as a society to cope with it, and secondly, the standard way of treating autism – ABA and VB being the gold standard, needs to be reanalyzed with better and more stringent studies.  There are a great many children whom ABA/VB have not helped who can be helped with other methodologies.

For more on Emma’s journey through a childhood of autism, go to:   Emma’s Hope Book

2 responses to “From a Mom in Melbourne

  1. Yes a lot of focus has been on ABA for a long time now. But Emma is now making great progress and that is what you have to focus on

    • Yes, exactly. Someone said to me the other day,”You don’t know what Emma would have been like had you not done all that other stuff early on, maybe she would have been in much worse shape.” And she’s right. We can’t know. We just have to keep plugging along.

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