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What shall we call "it"? Autism? Asperger's? Or what?

You are still publishing papers on "autism", new papers from your group come out every month. Yet you say that ESSENCE is what it is all about. Can you make this clear?

Dozens of projects that we are still running and that include long-term follow-up were designed on the basis of the old assumption that autism is more or less a "pure" disorder. The cohorts of children and adults involved in those studies were diagnostically categorised according to the then generally accepted notion that comorbidity in autism was something "separate", not really part of the individual’s "autism". We were aware (unlike many other groups) that overlap with "other diagnostic categories" was very common, not just in autism, but in ADHD, developmental coordination disorder, anorexia nervosa, epilepsy, intellectual disability, and Tourette syndrome, to mention but a few and therefore we have always included more information about the participants in our studies. But, you are right, like virtually everybody else, our early publications treated the "condition" as autism. We also believed that it is a spectrum disorder.

Is autism a spectrum disorder?

No. It is a disorder category that includes hundreds of different spectra, spectra that are associated with the aetiology and risk factors in the individual case. For instance, there is within autism one spectrum (which in turn consists of more than one spectrum) associated with fragile X, another with Rett syndrome, yet another with foetal alcohol syndrome and one with extremes of prematurity. Lorna Wing and myself were the early proponents of autism as a spectrum disorder, but we both came to the conclusion that it is not one spectrum. It is therefore appropriate to be talking about autism (or rather autisms in the plural) rather than autism spectrum disorder.

There is currently more or less of an uproar in the daily press about how Hans Asperger behaved during the second world war. People are saying that we should no longer be talking about Asperger Syndrome. Do you have a point of view?

A lot of people (whole populations) behaved in a way that we would now, with hindsight, deem awful. I have not seen convincing evidence that Asperger behaved worse than a very large proportion of all in Germany and Austria. Rickard Strauss cooperated with the early Nazi regime in order to protect his family. He wrote some of the most wonderful music ever. People still refer to his Vier Letzte Lieder as Rickard Strauss’ Four Last Songs. Ingvar Kamprad was a member of the Swedish Nazi Party. Should IKEA not be called IKEA (for Ingvar Kamprad Elmtaryd Agunnaryd)? Asperger described the syndrome that Lorna Wing gave the name Asperger syndrome. He was not a member of the Nazi party. We cannot change historical fact by pretending a person did not exist or make him/her unmentionable. Asperger syndrome was described by Hans Asperger, so it is Asperger syndrome.

Should we not just talk about ESSENCE instead?

Fine with me. But we will need to have a lot more terms for all the types of problems that people with ESSENCE are struggling with every day of their lives. So autism, and ADHD, and Tourette syndrome, and Asperger syndrome will remain for a very long time to come - I think...

I have just published a new book about ESSENCE (in Swedish). It will appear in other languages soon (possibly later in the year).

Interview by Nanna Gillberg

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Page Manager: Anna Spyrou|Last update: 5/23/2018
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