Certain aspects of Autism and Asperger’s syndrome remain controversial in Ireland. These controversies cause enormous distress to families of persons with Autism. In reality these controversies are unnecessary and the distress to families is unnecessary, particularly as these families have sufficient demands on them with their child with Autism without unnecessary artificially created controversies.
The first controversy the families have to face is the controversy over narrow versus broad spectrum diagnosis of autism. The old fashioned concept of Autism, called Kanner’s Autism, which is a narrow conception of Autism is no longer believed by anyone. Instruments called the Autism Diagnostic Interview and Autism Diagnostic Observation Scale are examples of instruments focussing on narrow Autism. Professor Michael Rutter pointed out that “the ADI-R is not a perfect instrument”. He is 100% correct about this, indeed most of the ‘seasoned’ critics of the ADI-R believe it to be a highly imperfect instrument. Adam Feinstein noted that at the International Meeting for Autism Research in London in 2008 that many of the most highly regarded researchers in Autism in the world ‘lambasted the tool (ADI-R) for missing many cases of Autism”, and that it was “an expensive and ineffective instrument”. It is extremely expensive and it is prohibitive for the developing world, and inhibits the possibility of research in Autism in the developing countries. At the 2008 meeting, which I attended, I heard researchers from Australia complaining about its prohibitive cost.
Professor Dorothy Bishop, Professor of Development Neuropsychology at the University of Oxford criticised the ADI-R for the vast time it takes for “training” in the use of the instrument, “time for administration and time for scoring, and consensus coding”. Professor Bishop correctly pointed out that “if you could be shown that there were real benefits in accuracy of diagnosis from adopting this lengthy procedure” then she would be happy to go along with these tedious assessment procedure and instrument. There is absolutely no evidence for this tedious long-winded assessment procedure. Professor Bishop correctly concludes that “the originators of the instrument have never demonstrated that you actually need such a long process – it is really more an article of faith to them”. This has echoes of religious faith that has no place in science.
I have found the proponents of this instrument in a number of countries are fanatical in their support of the ADI-R, indeed have a “religious” faith in its value. Professor Bishop also points out that in relation to the ADI-R-ADOS that there are “plenty of children who come out as meeting criteria on one instrument only, and there seems to be no sensible guidelines as to how you proceed, other than to seek expert clinical opinion. Professor Bishop recommends “doing studies to see what is the minimal set of items you have to get reasonable diagnostic accuracy and I doubt that we really need a three our interview for each case”.
I am continuing to see parents with children with Autism who come to me in great distress and tears because they had been told their children did not meet criteria for Autism based solely on these tests, when it was absolutely clear to me and to the parents that the parents had classic Autism broader phenotype – Autism Spectrum Disorder. How long more am I going to have to deal with parents in tears? I don’t think parents should have to suffer unnecessarily because of the above reasons. Their energy should be put into therapeutic activities for their children, not having to go from one professional to another to get a formal diagnosis.