This month I wrote an article for Autism World Magazine, a newish online publication based here in Australia. It was a response to a piece in the July edition by Valerie Foley claiming anyone who refutes we are in the midst of an autism epidemic have their head up the proverbial. Yes I am using some creative license in my interpretation.
I figured I should share my thoughts here also so below is the article in full.
Ultimately Id argue there’s no need for panic. There is need for increasing early detection and intervention. There is need for high quality support for families caring for autistic people and of course those with ASC’s. There is need for ongoing research into causation and amelioration of any co occurring health issues. Yes the numbers are rising, but there is no evidence to date to suggest a dramatic surge in actual cases of autism. I’m not dismissing out of hand there may be some increase in actual cases occurring, but I am yet to be convinced that those numbers are worthy of hysteria. Knowledge is power, and our knowledge of autism is in its infancy. As time marches on so does our understanding of ASC’s and that in turn leads to better identification. If the parameters for the condition have become so broad that its creating an impression of a false explosion then that’s a different debate for another time. My position isn’t born of fear or ignorance, but a belief we need to step back from anecdotes and look at the research.
I figured I should share my thoughts here also so below is the article in full.
ALERT NOT ALARMED.
I admire the passion and commitment of parents in the ASD community, theyre advocates not to be messed with. So it is with some trepidation that I take on the task to provide a rebuttal to last month’s piece arguing the idea we are in the throes of an autism epidemic by Valerie Foley.
While the author’s claims may seem at first intuitive I have come to differing conclusions about the ever increasing ASC (Autism Spectrum Condition) numbers. Valerie’s article touches on the points I would like to raise in defence of my own understanding so I will address each of them. But prior to doing that let me acknowledge the very real concerns and challenges that can come with autism, both for those who are autistic and those of us who love them. It is not my intention here to in any way minimise those difficulties. As the parent of two children on the spectrum and someone who has daily contact with many other parents of children and adults on the spectrum I think I’m well placed to acknowledge the suffering and co existing medical conditions that can occur.
That said, I’m not sure it helps to conflate the problems that for many can be associated with ASC’s with the epidemiology of it. It only lends itself to a sense of fear and urgency which I think can at times be misplaced and doesn’t serve the needs of parents who may be struggling to come to terms with a recent diagnosis.
The article states,
“ We are undeniably in the grip of an autism epidemic” and suggests those of us who refuse to accept this as a fact are tying to dodge an ugly truth and its accompanying discomfort. That some of those disquieting feelings might come from an awareness we as parents made choices that caused our children’s autism. Apparently leading to a collective denial of an epidemic. This seems to me to be a very disease centred view of ASC’s. Yet autism is not a disease. It is a neurological and developmental condition. And a very recent one in terms of knowledge and understanding. For those who are interested the Epidemiology of Autism on Wikipedia is interesting.
The author asks us to recall how many children we knew with autism when we went to school. I don’t know about anyone else reading this but I went to school in the 70’s and 80’s. In 1975, when the CDC released its figures of 1 in 5000 society was still under the influence of Belttleheim’s theories. The assumption that parents (read mothers) were the cause of autism via withdrawal of parental affection, also known as the refrigerator mother theory. This shows how little we knew of and understood ASC in the not too distant past.
Furthermore children, and adults, who did not meet the classic diagnostic criteria for Kanner’s autism would be labelled with a myriad of other incorrect diagnosis. Anxiety, neurosis, depression, psychosis, schizophrenia, OCD, personality disorders, ADD, ADHD and so on the list goes. Remember it was only as recently as the 1980’s that Lovaas showed people who had previously been written off as irreversibly and devastatingly disabled had the potential to learn and show great improvement in living skills with intensive support. Prior to that point in history the only ‘treatment' for those labelled autistic was institutionalisation. This is why we didn’t go to school with autistic kids. Remembering inclusionary education policies are also fairly recent.
This point goes some way to answering the question of where all the autistic adults are now. They are coming out of the wood work in droves. I can’t count the number of parents I know who received an ASC diagnosis subsequent to their children’s dx. And then there’s the rest of us, who won’t ever bother being formally assessed but can see the apples are not falling far from the tree. If you are a parent reading this and you haven’t already, read up on the Broad Autism Phenotype. Also this wonderful article, http://www.theatlantic.com/magazine/archive/2010/10/autisms-first-child/308227/ Autism’s First Child, or any of Temple Grandin’s books, or John Elder Robison’s or Daniel Tammet's, I could go on. Or read Roy Grinkers 'Unstrange Minds' about the history of autism. The adults are many.
Which leads me to genetics. The author dismisses the idea of autism being primarily genetic yet contemporary research leads overwhelming to two conclusions, firstly that autism is not a generic condition with a universal cause. Which incidentally is why we could not have a prevention campaign similar to that of diabetes. And secondly that genes play an absolute determining role in both the inheritance of ASC and the type/severity. This is not to say environment is without it’s place in this scenario. Genes and environment interact in complex ways. I’m not a geneticist, not even a researcher, so am in no position to outline the copious data and studies relating to autism and genetics but what I can tell you is there are many researchers around the world who are happy to chat about their work in this field. Google will throw up many. Also while youre in the search engine try looking up IMFAR (International Meeting for Autism Research) to read some of the recent papers presented in Spain. Even Youtube has some interesting interviews with researchers. My point is this information isn’t difficult to find if you want to.
The broadening of criteria over time alongside the ongoing education of professionals to both identify kids at risk for referral and then diagnose appropriately has most certainly, in my view, been the overriding cause of the escalating figures. In response to the question why didn’t the figures increase after 1994 post DSM 4 and then flatten is simple. The figures did indeed increase after the criteria allowed for far greater inclusion, such as pdd-nos and Aspergers, and it did not even out because it takes considerable time to educate those at the front line, the nurses, teachers, GP’s about the broad symptomology of ASC’s which is required in order for referrals to the pediatircians and developmental psychologists who are able to properly administer the various assessment tools. These tools incidentally have only been around since the 90’s and in the case of gold standard assessments such as the ADOS, not commercially available until 2001. This lag between the DSM changes and broad, sound education of professionals charged with the responsibility for diagnosis remains, sadly for many families , far longer than it should.