If I had a child diagnosed with autism I’d be angry about this

Do you live in Australia? Are you reading today’s edition of a national or city newspaper? If you are, most likely you will come across a story featuring Prof. Fiona Stanley about a new child health research project to be conducted by researchers at the WA-based Telethon Institute for Child Health Research. Why do I have concerns about this? It’s quite clear to me, after reading a story in my local paper, that Stanley and her team either believe that the supposed increases in the diagnosis rate for autistic spectrum conditions in the last decade or so are a reflection of a genuine increase in autism, or at least they are happy to go along with this idea uncritically, as it suits their interests. Here is a quote from Prof. Stanley from a press release published at the web site of the Telethon Institute for Child Health Research; “A new approach is needed because of the increases we are seeing in a whole range of problems affecting children, ranging from obesity to autism”. She doesn’t say “increases in diagnosis”, she just says “increases”. By going along with the idea that the increase in autism diagnosis reflects a genuine increase in autism, Fiona Stanley and her colleagues are passively supporting the dangerous and influential movements of assorted nutbars and ratbags who claim that autism is increasing and it’s all due to vaccines or mercury poisoning. As far as I know, the researchers and academics and clinicians who have genuine expertise in the area of autism tend to be openly sceptical about the idea that the rate of autism has really gone up. They tend to support the explanation that the rate of diagnosis is the only thing that has gone up.

I’m even more concerned that Stanley and colleagues appear to believe that autism has, or might have, environmental causes. Prof. Stanley doesn’t bother to mention genetic factors. I find Professor Stanley’s recent media statements to be far from clear, but she does make reference to children “developing conditions such as autism and ADHD”. Her use of the word “developing” implies that autism isn’t inborn and pre-determined, but is something that may or may not happen to a child. This way of thinking about autism is at least 40 years out of date, and very much in conflict with the consensus among autism experts. I don’t think there’s a single credible autism expert in the world who doesn’t acknowledge the major importance of genes in regard to the autistic spectrum, but our esteemed Aussie professor never seems to have much to say about genetics. This is absolutely typical of the thinking and public statements of many leading Australian professionals and academics involved in various aspects of child health and child education. These optimistic people want to believe that all childhood problems are fixable or preventable, so they don’t want to believe that some people have a fate that is set genetically from conception. These nice dreamers don’t want to consider the proposition that the only way to prevent some things from happening is to stop some types of people from reproducing. Ideas such as this are most unfashionable among this left-leaning set of professionals. These eager people want to believe that they can intervene to great and positive effect in the lives of troubled children. I would suggest that if this is someone’s ambition, a career in social work or the police force might be more suitable than working in child health or education.

Prof. Stanley and her colleagues appear to be interested in finding out about the possible impact on child welfare of the increase in women’s consumption drugs and alcohol. Why should this be of concern to parents of children diagnosed with autism? In 2008 it was revealed on the ABC Radio National show All In The Mind that in Australia some parents and carers of children who have foetal alcohol syndrome (FAS) are getting their children diagnosed with autism or Asperger syndrome in order to gain access to disability support resources. These kids have the label of “autistic”. If the professor and her research institute count children such as these as cases of autism in their research, as they could well do, they might (erroneously) find that drinking alcohol during pregnancy is a risk factor for having a child who later “develops” autism. I’m sure that would do a lot for the public image of the parents of autistic people. It is an undeniable fact that in Australia children who suffer from brain damage, retardation from genetic syndromes, FAS or other problems are being given diagnoses such as autism, Asperger syndrome and ADHD, not necessarily because such labels are accurate or complete explanations of their conditions, but this may be happening because it is their parents’ easiest or only means of gaining access to services and supports that are needed. As long as this situation continues, researchers who uncritically study populations of subjects who have been labelled as autistic or ADHD will come up with research findings that are skewed, misleading and wrong, and which may have negative consequences for children who are genuine cases of autism or ADHD, and their parents.

My own biggest concern about this research project is that it may not be designed in such a way that it enables the effects of genetic factors to be separated from the effects of environmental factors. I fear that the researchers will simply gloss over this problem and discuss the results as though they are able to be certain that environmental factors are those that are responsible for effects found. Why do I fear that this will happen? Because I have seen this type of misrepresentation of research findings before from this crowd.

I noticed that researchers from the Curtin University are going to be involved in the research project. In January this year an Associate Professor at the School of Education at Curtin University was exposed on the front page of The Australian newspaper for misleading a university ethics committee who were supervising the study of an ADHD drug that she was leading. The subjects in the study were children. I found the whole affair disgusting, and my regard for Curtin University took a big dive after I read that story. I wonder if this associate professor from Curtin will be involved with the upcoming research project with the Telethon Institute crowd? Nothing would surprise me about Western Australian child health researchers.

So there you have it! In 2003 Australia gave Professor Fiona Stanley the honour of being named the Australian of the Year. She appears to have ideas about autism that are not much less outdated and wrong and unfairly stigmatizing as those of Bruno Bettelheim. Her team of researchers have been given a grant of nearly 10 million dollars by the federal government. WTF Australians?

Link to press release from the Telethon Institute for Child Health Research:
http://www.ichr.uwa.edu.au/media/917

Link to 2008 story about FAS at All In The Mind:
http://www.abc.net.au/rn/allinthemind/stories/2008/2352982.htm#transcript

Link to story in The Australian "Curtin university mislead about ADHD drug":
http://www.theaustralian.news.com.au/story/0,25197,24893755-12332,00.html