Corrections to the blogosphere, the consensus, and the world

Thursday, November 16, 2006

Adult autism

One of the points sometimes brought out to support the view that there is now an epidemic of autism is that there is not an appropriate number of older autistics; that the incidence rate is higher than the prevalence rate, which implies a rising incidence (or an increased death rate, which isn’t generally suggested). There is, however, another probable reason why autism counts in the adult population are lower than in children. It’s illustrated in Schopler’s introduction to Autism in Adolescents and Adults, the book he edited (with Mesibov) in 1983.
(p.3) Can an adolescent or adult have autism? When that question was asked one or two decades ago, most people familiar with the term ‘autism’ would have answered ‘certainly not’. They had heard of Kanner’s work. He had used the term ‘infantile autistic’. It meant a psychiatric disorder of early childhood…
According to that definition the only way the diagnosis could be made was retrospectively, from a person’s early history. But if you met an adult whose early history you did not know, most people had no idea what characteristics and current behaviours might be expected to make up the diagnosis of autism.
The reason for this state of ignorance is not very mysterious. Kanner’s descriptive reports on young children had [sic; have?] only been on the books for four decades. Empirical research initiated by behaviourists had only begun in the 1960s, and those of us who were concerned with these problems then directed most of our attention to the younger children. Autism was defined by Kanner’s criteria. We literally had not met and were not familiar with a child who had grown up. We did not know what to expect, what kind of behaviour to look for, let alone …. Where to find such adolescents. Would we look in mental institutions or psychiatric wards? In those days autism was considered the earliest form of
(p.4) childhood schizophrenia. Such children were usually regarded as ‘untestable’ and could easily be mistaken for mentally retarded. Or should we look in the normal population,since autistic children were often confused with ‘artistic’ children with high intellectual potential? These questions were largely ignored during the 1960s.
As late as 1977 a motion was introduced to the executive board of the National Association for Autistic Children recommending that the name of the organisation be changed from National Association for Autistic Children to National Association for Autistic Citizens – to include adolescents and adults. The motion was defeated at that time. [it appears that the Association became the National Society for Autistic Children and Adults (still NSAC) in the early eighties]
By publishing this volume we have affirmed our view that autistic adolescents and adults indeed exist.
Although this is the first book published on autism post adolescence, we disclaim any implication of having discovered the diagnostic group. Instead it is our view that the growing body of empirical research developed from the last 20 years has both clarified and broadened the definition of autism.

This extract raises a number of questions. On, which I shall leave at this time, is what kind of mindset you would have to have not to speculate on what these kids would be like when they grew up. I have great respect for Kanner, which makes it harder to understand his initial lack of interest; later commentators were largely boofheads, and their tunnel vision is not surprising. Still, one point that it does clarify is why so few old people have diagnoses of autism. Until the mid-eighties it wasn’t possible to get them. Anybody who was older than 15 in (say) 1980 – anybody over 40 now - wouldn’t have been considered eligible. The diagnostic criteria excluded them. They would have been given other diagnoses – MR, or ‘artistic’ – and a diagnosis, once given, is very difficult to change.

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