Fragile X Article

I read your article written by Professor Hagermann on the association between Fragile X mental retardation Syndrome and autism. Not all researchers agree with the concept of relationship between Fragile X and Autism.

What frustrates me as a parent is that there is no debate and argument about what 'autism' actually is.

The definition of 'autism' remains elusive and since Kanner's publication in 1943, the paper that first recognized infantile autism as a specific disorder, prevelance rates have swung widely depending on definition and diagnostic tools used to make a diagnosis.

In 1965 Kanner published a paper in Behavioral Science on the brief two decade history of 'autism'.

http://neurodiversity.com/library_kanner_1965.html

Here is what Kanner wrote in 1965:
"This sage advice was not heeded by many authors. While the majority of the Europeans were satisfied with a sharp delineation of infantile autism as an illness sui generis, there was a tendency in this country to view it as a developmental anomaly ascribed exclusively to maternal emotional determinants. Moreover, it became a habit to dilute the original concept of infantile autism by diagnosing it in many disparate conditions which show one or another isolated symptom found as a part feature of the overall syndrome. Almost overnight, the country seemed to be populated by a multitude of autistic children, and somehow this trend became noticeable overseas as well. Mentally defective children who displayed bizarre behavior were promptly labeled autistic and, in accordance with preconceived notions, both parents were urged to undergo protracted psychotherapy in addition to treatment directed toward the defective child's own supposedly underlying emotional problem.

By 1953, van Krevelen rightly became impatient with the confused and confusing use of the term infantile autism as a slogan indiscriminately applied with cavalier abandonment of the criteria outlined rather succinctly and unmistakably from the beginning. He warned against the prevailing "abuse of the diagnosis of autism," declaring that it "threatens to become a fashion." A little slower to anger, I waited until 1957 before I made a similar plea for the acknowledgment of the specificity of the illness and for adherence to the established criteria".

The startling prevelance rates began to rise with the introduction of DSM-III-R and ICD-10 in 1987. Diagnostic 'Gold Standard' tools ADOS, ARI-R emerged shortly based on the DSM-III-R and ICD-10 diagnostic criteria. All of these tools are checklists in the form of a Chinese Restaurant Menu.. Two from column A... one from column B... If enough items on the checklist are marked off, the child qualifies for an 'autism' label even if the child does not show the core defining feature of what Kanner called 'infantile autism'.

The problem is that as the number of what Kanner called 'isolated symptoms that are part features' of the overall syndrome carry the same weight as the core defining feature of what he described as the 'sui generis' of infantile autism. As the number of isolated feature parts of the overall syndrome began to expand, none of which are specific to autism, the prevelance rates began to dramatically rise.

In my opinion, the autism epidemic is a myth. There is nothing inherently wrong with over diagnosing since, as Schopler has stated, it has become a passkey to special education services. The problem is that in research no one can possibly know whether the sample of 'autistic' people participating in research projects actually meet the original concept of what autism is, leading psychiatrists and behavioral geneticists to making false assumptions and drawing misleading conclusions.