22 Feb 2008

What do I know

The Irish media's coverage of ABA continues.

Last Sunday, there was an opinion piece entitled "Disgraceful system that has failed or children." Writer Marc Coleman states that "What is happening with autism calls on our resources of outrage." But just a few lines later he writes, "Thank God, I have no experience of autism in my immediate family: in Ireland that would be some cross to bear."

Is anyone else outraged at this disgusting statement? How dare he say people like my son are a cross to bear.

He then tells the story of a friend of his who rang him to apologise that he wouldn't be able to attend his wedding, as the friend's child was about to start treatment that same day. This child didn't have cancer or an illness that meant "treatment" couldn't be postponed for a day, no, the child was autistic.

Coleman then totes up the cost of autism on Irish society, the burden these people place on the economy, basing his figure on a UK study. He comes up with the figure of €100m a year; the cost of institutionalising a child with autism for the rest of their life. Because, he thinks, that's the only alternative to ABA.


He then says;

With a success rate of 50 per cent, the return on investment of an extra €50,000 for four years of Applied Behavioural Analysis leads to savings per child to the exchequer of €1.4m. And even if that figure is an overestimate, with around 6,000 children estimated to have autism, the return to the exchequer over our lifetime will be significant.Of

Of course this is how a clever, worked-out and integrated approach to policy making would work, an approach with a heart, a brain and an ability to combine both. Yes Applied Behavioural Analysis is needed.

A success rate of 50%!!!
What foolishness.

In the Irish Examiner, I read that Michael Ringrose of People with Disabilities Ireland says,

What seems to be accepted by all sides is that the ABA teaching method is appropriate for certain children with autism. What is needed now is to make sure the appropriate system for each child is diagnosed in the first instance but crucially, that it is available to each child, not in a limited way as the current education system dictates but as the child needs it.

I wonder if there are any autistic people on the board of that organisation.

Yesterday's leader in the Irish Independent is supportive of the demands for ABA.

Parents believe ABA is by far the best treatment and this view is backed by many experts, including a prominent member of a task force that advised the Department of Education on autism. The department and the minister reject the exclusive use of ABA and favour a combination of methods. Ms Hanafin says that this view is endorsed by a consensus in the international autism community.

Can both sides be correct? The parents who report phenomenal improvements in their children's condition as a direct result of intensive ABA treatment, or the minister who insists she is simply applying best international practice?

Earlier this week, in these pages, the minister made her case in a reasoned and logical manner. Sadly, for her, many parents of autistic children see this only in terms of love, not logic.

I responded to the online edition, pointing out that not all parents think this way, and that you can have both love and logic. I also briefly outlined how scant the evidence is for ABA, and wrote, "the study people kept referring to as the best evidence, is 21 years old, had major design flaws, and involved the use of harsh aversives; slapping and shouting at the children. Yet people keep quoting this study as evidence for ABA! (The 50% "cure" claim originated with this.)"
I had to keep the comment to under 1000 characters, which didn't seem to apply to some subsequent commenters!

The next commenter got annoyed at what I said, especially the bit about the 21 year old study. But it is true, most of the media stories I have read do make the credulous statement that there's a 50% success rate" or 50% of children are"recovered" using early, intensive ABA, so it is crucial to point out the flaws in this study. This post in the blog Natural Variation, an excellent autism blog, does just that.

One of the comments is from a Mr Mickey Keenan.

What the minister has never understood is that ABA is NOT a METHOD any more than Medicine is a METHOD. Medical SCIENCE and Applied Behaviour Analysis are distinct SCIENCES. Until she gets this right, the minister can't even begin to address funding issues for training in ABA let alone funding for schools. You can't create more ABA schools if you don't have more trained behaviour analysts to work in them.

So, minister, are you right, or are the professionals right? Is ABA simple another METHOD, or is it a SCIENCE? Once you acknowledge that it is a science then you have to concede that it is possible for one 'METHOD' to apply to all children. That "METHOD" is called the SCIENTIFIC METHOD. I sincerely hope you are not saying that you can envisage something other than the scientific method being best for the children.

From all the SHOUTING, and weird statements, I will assume this is not Dr Mickey Keenan, University of Ulster lecturer and ABA specialist.

I'm a lay person, just a mum. I am interested in how autism is reported because the attitudes depicted and disseminated by the media directly and indirectly affect my autistic son. I hate to see the negative language used in some of these stories, the fear of difference and lack of understanding, the assumption that autistic children are so very strange, that they need a wholly separate way of teaching them, one which would never be used with typically developing children. I get upset at the hype and misrepresentation of the scientific basis for ABA, just as I do when people say vaccines cause autism.

It's upsetting that there doesn't seem to be anyone speaking about these things in Ireland. Perhaps everyone else agrees with the idea of ABA funded for all the children whose parents want it, no matter that the reasoning they're using in demanding this is so flawed. But whatever, what I say is not going to change anything.

1 comment:

Anonymous said...

Sharon, thank you so much for your reasoned postings on this topic. I find it very frustrating that ABA gets so much press here and is seen as "the only way" when there are other things that work. I think the heart of the discussion really is the whole trying to make neurodiverse into neurotypicals.

When I read posts like this after a tough day, I am refreshed to know that not everyone wants only one approach to working with children with autism. You are absolutely right that evidence based practice is BADLY needed in Ireland!