Autism Spectrums And DORE Speculations

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So, I’m still waiting on a reply from DORE Australia, after reading a great blogger on the topic of DORE. You see, I have an unanswered question. Something I emailed to them last month and got a cheery reply to, even!

Simple enough question, I thought. “Why would the Australian website for DORE claim that they do not publish research on that site which hasn’t been peer reviewed… when an article in the Leamington Courier, dated January 2008 features claims about research that isn’t peer reviewed yet in any journals?”

“…In addition 56 people who had been formally diagnosed as suffering from autism have now completed the programme. Of this number 100 per cent showed improvement across a battery of cognitive, literacy and motor tests and 72 per cent showed improvement in social skills, self esteem and mood.”

Hell of a claim, huh? I’m still waiting, DORE? About a month now, or near enough?

See, I first bumped into DORE at the ‘Mind, Body, Spirit‘ Festival in Melbourne, in November. Amongst the psychic halls, magnetic masseuses, really bad cherry-cordial touted to be great for my constitution (note, organisers of MBS - don’t put competing tonic drinks next to each other, because they snipe. I ended up with five sodding cups of goo before I was bullied into saying ‘yes, your organic berry-drink tastes just a little less crappier than theirs‘).

Oh, many people in Australia watch the popular current affairs program Four Corners, which featured a report on DORE last year. Good summary, if you wish to read the transcript.

My M.Ed in Special Learning Needs mostly focused on gender issues and gifted and talented education. But you can’t really escape looking at topics like autism and dyslexia, dyspraxia and ADHD and the like - certainly not as a teacher in schools, where professional development is pretty much expected. In fact, the very things that DORE claims to care about have been a part of my education for a very long time.

If you’re not a regular reader of science blogs, then you should probably catch up on some of the important issues regarding vaccination myths and autism, and the snake-oil garbage / claims like chelation therapy and mercury myths that abound. I’d suggest sites like Neurologica Blog, Brain Duck, Holford Watch and of course Respectful Insolence on the topic. More recently you may have heard about the political element involved with ‘what causes autism’ - Aetiology has recently summed up some of the unfortunate comments made in the USA.

In fact, it was Brain Duck who pointed out to me that when the DORE people in Melbourne handed me this pdf form, that it looks very much like a basic crib sheet for ‘difficult questions’ to ward off people like myself. Do I just read the research at the end of that handy sheet and leave it as that? The answer is no. I ask questions.

You see, I have access to not only blogs and news articles, but journal articles that say things about DORE Achievement Centers, like:

Remarkable success is claimed for an exercise-based treatment that is designed to accelerate cerebellar development. Unfortunately, the published studies are seriously flawed. On measures where control data are available, there is no credible evidence of significant gains in literacy associated with this intervention. There are no published studies on efficacy with the clinical groups for whom the programme is advocated. It is important that family practitioners and paediatricians are aware that the claims made for this expensive treatment are misleading.

The most recent paper I can find (and yes, you can read all about the saga of this particular journal Dyslexia here, thanks to Brain Duck) only said:

How likely is it that the linguistic gains reported by Reynolds and Nicolson (Dyslexia, 2007; 13: 78-96) are due to test-retest effects?… findings suggest that two of the four linguistic gains reported by Reynolds and Nicolson (2007) are due to test-retest effects (phonemic segmentation and working memory). The remaining two tests are measures of spoken language and not reading. Hence, the data reported by Reynolds and Nicolson (2007) are not sufficient to support DDAT as an effective treatment for children with reading difficulties.

Not only have I been waiting for DORE’s answer, I’ve also become a little more aware how people really do think some rather odd things about autism. A mailing list that I subscribe too had a bunch of people (yes, professionals in their field) demonstrate this to me. It centered around this lady: Amanda Baggs.

According to some in the mailing list I subscribed to, she’s a fake - ‘What an elaborate hoax.’

Sadly, this just indicates that the stereotype is stronger than the research and evidence one can find upon three main forms of Autistic Spectrum Disorders (ASD), being autism, Asperger’s syndrome, and PDD-NOS (or Pervasive Developmental Disorder Not Otherwise Specified). ASDs can’t be easily dismissed as involving ‘just able to do X and Y and nothing else’. It’s not true that it equals being like the silent, beautiful blonde toddler in the children’s novel October’s Child by Eleanor Spence or even just being like Charlie in the recently released Australian film, The Black Balloon.

One of the blog entries on Science Based Medicine discusses the changes in definition and continuing investigations - a book I picked up recently by Daniel Tammet, ‘Born on a Blue Day‘ kind of says some of it for me:

When I was a child, doctors did not know about Asperger’s Syndrome (it was not recognised as a unique disorder until 1994) and so for many years I grew up with no understanding of why I felt so different from my peers and apart from the world around me. By writing about my own experiences of growing up on the autism spectrum, it is my hope that I can help other young people living with high-functioning autism, like my brother Steven, to feel less isolated and to have confidence in the knowledge that it is ultimately possible to lead a happy and productive life. I’m living proof of that. Born on a Blue Day, Daniel Tammet, p.15.

I can also point to the example of Dr Temple Grandin. I have taught the novel ‘The Curious Incidence of the Dog in the Night-time‘. Science blogger John Wilkins even talks about his son and himself as having high-functioning Asperger’s Syndrome. There’s more than a handful of people I admire who I’ve met online (more often than not, online) and in real life who fit somewhere on the spectrum, all unique as anyone else you might care to mention. That’s kind of the point behind the word ‘spectrum‘?

Amanda Baggs herself, in an interview on CNN’s site, recommends a book - ‘Autism and the Myth of the Person Alone’. I hoped that posting a link to the Wired interview with her would help a little with the dismissal that her YouTube videos got - The Truth About Autism: Scientists Reconsider What They Think They Know.

Oh, whilst SWIFT claims that a fifteen-year old documentary on FC, ‘Frontline: Prisoners of Silence‘ will be taken from public viewing - (’before the zealots who support this farce can get it taken down‘) - to be brutally frank, it just isn’t the case.

Frontline has had this out for SO many years, James Randi, and it’s hardly likely to remove the evidence of it that easily! There’s a great transcript of that documentary ‘Prisoners of Silence’ here, for a start. There’s a few libraries that still carry VHS copies, like my local - and clearly it’s found in full online.

I am still looking into communication methods, but I know that other test situations, using linguistic analysis and documentation of physical and independent typing, indicate shown individual authorship (Cardinal, Hanson and Wakeham, 1996; Tuzzi, Cemin and Castagna 2004). All of this just points again to uniqueness and variation in capabilities, as Amanda Baggs and the other authors and researchers I’ve mention, show.

As for unique evidence, in my opinion it’s kind of a pity that DORE seems to be more keen on charging for the ‘therapy’ rather than producing some evidence for what the newspaper article said about ‘100% recovery’? I guess I’ll keep waiting to see if that’s true…

Speaking of ‘online’ - I’ll let Amanda Baggs and the words of David Spicer finish this off:

References:

Bishop, D. (2007). Curing dyslexia and attention-deficit hyperactivity disorder by training motor co-ordination: Miracle or myth? Journal of Paediatrics and Child Health. Vol 43(10), 653-655.

McArthur, G. (2007) Test-retest effects in treatment studies of reading disability: The devil is in the detail. Dyslexia: An International Journal of Research and Practice. Vol 13(4), 240-252.

Rutter M. Incidence of autism spectrum disorders: changes over time and their meaning. Acta Paediatr. 2005 Jan;94(1):2-15.

Tammet, D. ( 2006). Born on a Blue Day. Hodder and Stoughton, London.

Crossley, R & McDonald, A. (1989). Annie’s Coming Out. Penguin Books, Melbourne.

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Tags: Amanda Baggs, Annie McDonald, Annie's Coming Out, Anthropologist from Mars, aspergers, Australia, autism, Black Balloon, Born on a Blue Day, Children, Daniel Tammet, DORE, facilitated communication, Four Corners, help, Holford Watch, JREF, literacy, Oliver Sacks, reading, research, Rosemary Crossley, special needs, studies, SWIFT, Temple Grandin, typing, USA, vaccinations, Wired, YouTube