All that glitters is not gold

[Posted on 13 June, 2017 by Christopher Gillberg]

These days, when diagnoses like autism spectrum condition, autism spectrum disorder (and even autism spectrum – yes, you read that right) are handed out left and right (most likely so that children and adolescents will get access to the kind of help available to them by law in many countries), it might be worth remembering what the Prince of Morocco said in The Merchant of Venice: “All that glitters is not gold”. Now, he was referring to the fact that a shimmering surface may hide something altogether less desirable, which is not quite what I am getting at here. What I am trying to say is that not all cases presenting with an autistic trait or two are (severe and functionally impairing) autism.

Lorna Wing always claimed (initially based “only” on clinical experience and interpersonal intuition) that one could find a touch of autism in most people. As several large systematic population studies have since proven, she turned out to be completely right about that. In the Bergen Child Study (that co-workers and I started 20 years ago) we examined (using e.g. questionnaires) many thousands of schoolchildren both at home and at school. It turned out that only a fairly small minority among all of them exhibited zero signs that might be interpreted as potential symptoms of autism. The overwhelming majority had at least something that could be perceived as autistic traits. Hence, being completely “unautistic” is not “normal”.

A new large study that we have performed here in Sweden shows that what can be labelled the “autism phenotype” – i.e. the symptomatology, amount and composition of problems we have long associated with the term autism – has maintained a completely stable prevalence rate from year to year (around one per cent of the entire child population); there are absolutely no signs of any increase over time. And yet, autism has been diagnosed and registered in more and more cases, to the point that over the last few years, almost three per cent of all adolescents have “acquired” an autism diagnosis (i.e. almost thrice as often as what would actually be called for). The number of symptoms exhibited by adolescents diagnosed with autism is much lower these days than it was around ten-fifteen years ago.

Behind this “autism-glimmering” surface there are usually other ESSENCE problems waiting to be found (such as ADHD, DCD and language disorders of different kinds). These do not glimmer as strongly as any isolated autism symptoms one might find. Unfortunately, unlike autism, the law does not automatically dictate support and intervention measures for people diagnosed with these other problems (even though the relevant legal passages certainly allow for the interpretation that these conditions necessitate supportive measures). And so, autism diagnoses are given to make sure that those affected by other ESSENCE problems can get help. But autism is not more important than ADHD, DCD, or language disorder (or intellectual disability either, for that matter).

We have to see some change, NOW. All people with functionally impairing ESSENCE problems must get access to the supportive measures that they need – whether or not they are diagnosed with autism. The vast majority of all people have some slightly (or very) autistic trait(s) about them. But not all of these traits constitute the kind of functionally impairing problems that an actual autism diagnosis refers to.

[This is a blog. The purpose of the blog is to provide information and raise awareness concerning important issues. All views and opinions expressed are those of the writer and not necessarily shared by the GNC.]