About ten or fifteen years ago I caught the end of an athletics show on television, and saw the world championship medal award ceremony. Though I have never had an interest in this sport, I was surprised to recognise the familiar shock of curly blonde hair of the winner of the fifteen hundred metre running event. It belonged to a fellow runner whom I had often met on training runs. Whilst he ran for it’s own sake, I ran to keep fit for rock climbing and mountaineering. Though I managed to beat Curly on those occasions, he was a particularly memorable fellow because he did not concede easily and always gave me a good run for my money. Though the obvious thought crossed my mind, that I could possibly have been a champion runner if I had followed Curly’s career path, it also occurred to me that Curly was world champion only of those who had chosen to take part in that particular event. Even if one included all of the qualifying events leading up to the final championship race of that year, the total number of runners involved may not have been more than a few hundred or so. There were and still are millions of people around the world who, like myself, use running purely as a means to a end, that is simply to keep fit. It follows then, from this large body of amateur athletes, that there may be many thousands like myself who, given the appropriate training and dedication, may also possess the potential to become serious contenders for a championship title.
I am reminded of this story whenever I come across statistics claiming to show the incidence or occurrence of autistic spectrum people in the general population. I have always wondered how those quoting such figures can proffer these data with such apparent confidence, bearing in mind that there is not yet even an agreed
definition for autism. Though there are many hypotheses including my own, as well as a plethora of unsubstantiated and wild claims to the contrary, the absolute fact remains that there is still no empirical or independently verifiable evidence whatsoever as to the cause of autism, indeed that it is even a metabolic disorder at all.
To be fair, the more responsible of those who report such statistics tend to admit that they are extrapolated from, and are thus a measure of, those who receive formal diagnoses of an autistic spectrum condition. However, there is no consensus amongst researchers and clinicians as to the location of the cut-off at the ‘mild’ end of the spectrum of autistic severity, or else agreement upon which of the family of related autistic-like conditions are included or discounted from their version of the spectrum. I also wonder if other variables should be taken into account, such as variations for regional, socio-economic, racial, cultural or gender, and even if such variations exist at all in the real autistic population. Like in the world of running where Curly was only really a champion of those runners who competed in formal races, then do those who are formally diagnosed represent all of the autistic spectrum people in the population in terms of both the absolute number and the true nature of the condition.
There is little unanimity in the clinical diagnostic practises in autism for many reasons, any of which may significantly affect the outcome of a consultation for a diagnosis. For instance, at the most fundamental level, variations are inevitable because there are many different diagnostic tools in use at any one time. A further layer of obfuscating variables are due simply to the academic or professional
background or affiliation of the diagnostician concerned, which for example may range from psychiatry to speech therapy. Each discipline has their own respective ‘interpretation’ of their favoured diagnostic instrument. Also, there may be political or financial pressure placed upon those clinicians who control the diagnostic ‘gateways’ which give access to expensive services or treatments. Such an effect could even be misinterpreted as ‘phantom’ regional variations in the incidence of autism by statisticians.
I am aware, as are other autistic spectrum people, that those people who are undiagnosed are just as numerous as those of us who possess a formal diagnosis, possibly more so. Many do not wish to become formally diagnosed because, quite correctly, they do not consider themselves to be disordered or unwell and in need of treatment. Many fear and suffer persecution, discrimination, incarceration, or
worse. It is apparent that professionals do not understand that the resulting anxiety and depression are manifestations of stress in autistic people, rather than expressions of autism itself. It follows then that the real cause of that stress is seldom the subject of a systematic investigation and thus remains unmitigated.
Those who are undiagnosed readily acknowledge that they are ‘different’ and most probably autistic as per the prevailing diagnostic criteria. And what of the statistics for those who are undiagnosed but completely unaware of their autism, or those who are aware but for whom it is simply not an issue?
The knowledge and experience of these successfully coexisting autistic people could be invaluable to those professionals currently working in autism, and a formal record of their mere existence and true numerical extent may have considerable implications. However, such an enlightened circumstance is unlikely because such fully functioning and included autistic people, of whom I am one, are contrary to the beliefs and models of autism prevailing amongst many of those professionals including, significantly, those with vested interests who monopolise and control the diagnostic ‘gateways’. Perhaps the real question about autism and diagnosis should not be how many, but rather about how much autism society is willing or able to afford and tolerate.