More Autism Than You'd Think; However......

You've probably heard of the recently published study in the British Journal of Psychiatry about autism being undiagnosed in "hundreds of thousands" of children. The study was led by Professor Simon Baron-Cohen of the Autism Research Centre. The May 28th Telegraph offers a summary:

A study of schoolchildren in Cambridge has found that for every three children who have been diagnosed with autism spectrum disorder there are around two who have the condition but have not been given a formal diagnosis.

It is estimated that around one in 100 children between five-years-old and nine-years-old have autism, meaning there are around 500,000 in the UK. But when researchers carried out more detailed assessments of 11,700 children, they found the true prevalence could be as high as one in 64.

This would mean that there are an additional 300,000 children in Britain with autism spectrum disorder but who have not yet been identified.

In the actual study, the researchers are careful to note some limitations that the media have not always highlighted, from the response of parents returning surveys being "quite low," to the unusualness of Cambridgeshire, described as not having a "nationally representative population since it has a higher proportion of higher social classes than the rest of the UK."

But (for starters) let's just consider the main point of the study, that there's a lot more individuals on the spectrum out there than are formally diagnosed. In the Telegraph, Baron-Cohen says that "the undiagnosed cases are likely to be at the mild end of the spectrum, are coping well with their families and may not need a diagnosis," and also that "for some families the autism label may 'raise anxieties' and be intrusive, rather than helpful."

Don't know about you, but we've certainly noted an increase in children with various diagnoses that aren't autism, but involve sensory and/or language processing issues, dyscalculia, hyperlexia, speech delays. These don't add up to a formal autism diagnosis of course but there's a sense that a number of children have "something" in the form of learning challenges, and that the "learning disability" category does not exactly cover them. Indeed, in some cases, parents (and grandparents) have been careful to explain the specific needs their child has and to note that "no, it's not autism."

And I'm reminded all over of how autism, once said to be "rare," is now being studied to determine precisely the opposite. About how, no matter where we go now, I always suspect someone else out there is, too, on the spectrum, as determined not only by how many puzzle magnets are affixed to cars.

Dora posted earlier this week about the revisions to the DSM-V definition of autism and I added a few musings. How might the "collapsing and expanding" of the spectrum affect---"collapse and expand"---diagnoses of autism? And while the unreported, or under-reported cases are said to be "mild," what exactly does "mild" (like "severity") mean?

I've a bit more to say about the study, in posts to follow in the upcoming week.