You will find some recurrent themes in this blog. This includes notions of how information can become distorted from the original source over time and the value of corroborating evidence when purporting to make statements of fact.
The first notion in particular may relate to this blog entry; analysing the original clinical descriptions of autism suggested by Dr Leo Kanner in 1943. It is perhaps timely that, in a few days, it will be 30 years since Kanner passed away (3 April 1981); indeed coincidental also that World Autism Awareness Day is on 2nd April (I wonder why they did not make it 3rd April instead?). I digress.
From the outset I want to acknowledge that, whilst Kanner's clinical descriptions form the basis for what we know as autism, I am by no means suggesting that he was the first to 'discover' autism given the many and varied texts from further back in history. Indeed, several other papers have suggested autism to have been present to some extent for many years prior to Kanner; although not labelled as 'autism' at the time (a label which did not exist).
I have always been keenly interested in Kanner's original 1943 paper 'Autistic disturbances of affective contact'. So much so, that my PhD drew heavily on his key clinical descriptions of 11 children who presented with symptoms including: inability to relate to themselves, extreme autistic aloneness, monotonously repetitious, anxiously obsessive desire for the maintenance of sameness and limitation in the variety of spontaneous activity. I have used but a few choice phrases from his text which have echoed down the diagnostic halls ever since.
There are however a few other phrases included in his 1943 text which, for one reason or another, did not quite receive the same subsequent acclaim. There are many reasons why such phrases and descriptions did not 'make the final cut' but I assume most were down to the old adage: a cobbler should stick to his last. Kanner was a Psychiatrist in the 1940s and hence specialised in 'disorders of the mind'. Subsequent interpretations of his text (e.g. DSM) have been undertaken specifically with Psychiatry in mind. Read on and you'll see what I mean.
'Food' (p.244) is mentioned in the 1943 text. Six of the children originally described by Kanner presented with various feeding difficulties; ranging from early vomiting, having to be 'tube-fed' and presenting with 'severe feeding difficulty from the beginning of life'. By early feeding problems I am assuming that this means problems with either mother's milk or the early formula milks (if they were even invented at this point). Six out of eleven cases, that's... er, over 50%. OK, he did not have a control group given that this was a case series description. Yet despite this, have early feeding difficulties ever been included in the diagnostic texts for autism? No, not even as an ancillary risk factor. Not once. Not never (not that I know anyway!). I know a few authors have offered potential explanations for early feeding difficulties in autism relating to the mechanical aspects of feeding and the 'perceptual' side of things. I am not saying that these may not be explanatory of what Kanner was perhaps describing. A few days ago however I blogged about a recent study from Harvard on the likelihood of lactose intolerance in cases of autism. Makes you wonder if today's technology were around during Kanner's tenure, would he be reporting lactose intolerance also?
Another example included in the original text. Kanner discusses the fact that 'several of the children were somewhat clumsy in gait and gross motor performances'. Gait and motor problems have similarly not been included in the diagnostic texts down the years. Unlike feeding problems however, there has been a slow realisation that such issues might be of relevance. It has however taken quite a few years for these elements to be 'realised' in cases of autism. One of the most recent studies being this one on the mechanics of gait in autism which is crying out for further replication.
The point I want to make with this post is that aside from going to the source for evidence, the original descriptions of autism from Kanner contained so much more than just behaviour relating to the triad (or should that be 'dyad'?) of impairments. Kanner did what any good scientist does - he observed and recorded things; not just behaviour but also developmental history and importantly somatic issues (see bottom of page 234).
I appreciate that today Kanner's autism has perhaps been 'subsumed' into this larger spectrum of autistic conditions. I often wonder how many of Kanner's original cohort would be diagnosed with autism, or an autism spectrum disorder, or even Asperger syndrome nowadays (bearing in mind that Hans Asperger did not define his patient group until a year later in 1944, and then light years away in Austria).
All of Kanner's 11 children would be diagnosed with autism. Kanner wrote another paper in 1965 reviewing the response to his original 1943 article. He would be appalled at the the DSM-IV definition of autism and would have blamed the introduction of DSM-IV for the what Allen Francis called the false epidemic of autism, attentional disorders and childhood bi-polar disorder. In 1965 he excoriated child pschiatrists for what was called 'the abuse of the diagnosis of autism that threatens to become a fashion:
ReplyDelete'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.
To complicate things further, Crewel, in the hope of avoiding confusion between true autism and other conditions with autistic-like features, suggested the term pseudo-autism for the latter. Even this term came to be employed haphazardly, and conditions variously described as hospitalism, anaclitic depression, and separation anxiety were put under the heading of pseudo-autism'.
History repeats itself.
Full text available here:
http://www.neurodiversity.com/library_kanner_1965.html