In the recent IMFAR meeting Simon Baron-Cohen had the opportunity to deliver a lecture closely following a presentation by John Elder Robison. John’s lecture had been quite emotional something that according to Simon had moved him to tears. The basic theme of John’s lecture had centered on the pain and suffering caused by his diagnosis of autism. Early on in John’s life he had wanted to have a girlfriend and enjoy a steady job; however, his autism made that impossible. In essence John’s cognitive style made him doubt his own abilities forcing him to pursue a multitude of different career paths. These events played on John’s mind convincing him that he was a “fraud”.
Although at the beginning of his presentation Simon praised John’s speech, from there on he went to provide a biased lecture that claimed, among other things, that the pain and suffering caused by autism were a result of comorbidities such as gastrointestinal disorders and/or seizures. In essence Simon completely ignored John’s claim of suffering caused by an autism diagnosis in order to establish his own line of reasoning.
Simon’s presentation was a call for a grammatical shift in nomenclature that claimed the benefits of talking about autism spectrum “conditions” rather than autism spectrum “disorders”. His claim was based on 10 different arguments. In each of these points the claim was made that the term condition presumably had the opposite connotation.
1) Disorder implies a biomedical cause.
2) Disorder implies severity.
3) Disorder implies suffering.
4) Disorder implies disability.
5) Disorder implies that something is broken or dysfunctional in the brain.
6) Disorder implies that there is only one way to be normal.
7) Disorder implies that there is nothing positive about the lived experience of autism.
8) Disorders implies the presence of cognitive defects.
9) Disorder implies the presence of serious psychiatric risk associated with autism, e.g. suicide.
10) Disorder gets you insurance cover.
In the end Simon concluded that the term disorder is potentially stigmatizing, the word itself being incompatible with having a different personality style or talent. In effect, Simon said that individuals with affective, behavioral, bipolar and eating disorders,among many others, do not have their own personality style and are talentless.
Before the presentation, I really liked Simon, his ideas and articles, but his presentation was scientifically weak, poorly sustained and extremely biased. A “medical condition” is defined in the free dictionary (http://medical-dictionary.thefreedictionary.com/medical+condition) as: “A disease, illness or injury; any physiologic, mental or psychological condition or disorder (e.g., orthopaedic; visual, speech or hearing impairments; cerebral palsy; epilepsy; muscular dystrophy; multiple sclerosis; cancer; coronary artery disease; diabetes; mental retardation; emotional or mental illness; specific learning disabilities; HIV disease; TB; drug addiction; alcoholism). A biological or psychological state which is within the range of normal human variation is not a medical condition.” There is very little to differentiate a condition from a disorder. The term itself (i.e., condition) eliminates being within the framework of normal variability be it in the physical or mental realm.
Unfortunately many of the precepts used by Simon to support his contention were only credible in his own mind. Indeed, a heart condition implies a biomedical cause that can be severe, disabling and one capable of providing significant suffering to the patient. His other precepts are equally erroneous. There are many medical disorders that neither have associated cognitive deficits nor confer serious psychiatric risk and both medical disorders and conditions can get you medical insurance coverage.
What I saw as a more serious flaw in Simon’s argument was the way he cherry picked some of the examples in order for them to fit his call for a “grammatical shift” in autism. When talking about brain studies of autistic individuals he implied that none of the existing findings were pathological because the brain in that condition was not “broken”. The examples presented were primarily in terms of variations in size of different anatomical structures but he never alluded to data sustaining a high prevalence of cortical and cerebellar malformations, gyral abnormalities, and disorders of migration or synapse formation. Indeed the data on brain pathology explains many of the symptoms observed in autistic individuals and are beginning to provide clues as to potential therapies.
Simon’s attempt to negate the seriousness of autism as a medical disorder is rooted in the New Age thinking spawned by the neurodiversity movement. This movement advocates that symptoms related to autism belong to the social rather than the medical sciences and that there is no need for treatment or research. Euphemizing the disorder negates the suffering of autistic patients that are pained because of their diagnosis. It may be that Simon’s experience has been restricted to clinical trials with higher functioning patients. If this is the case he should start advocating for those that are more representative of the condition and disabled by the same.