Autism here and (over) there
Posted Oct 21, 2013
Hey, I’m just back from a meeting in Europe! Pediatric neurology. Couple of observations:
The Europeans are certainly interested in autism. Witness the debates in France about whether it’s the mother’s fault or not. But European physicians tend to put a somewhat different frame about it than we do.
Here, autism counts as a distinct disease. There, it’s really just a chapter in the mental retardation story. And European physicians tend to talk about “MR” rather than autism. Of course all children with the autism diagnosis are not retarded. That’s the purpose of “Asperger’s Disease,” meaning autism with normal or higher intelligence. But over there, “MR” continues to be a valid category while here the term has become taboo.
Why is that?
It’s because American physicians are running scared in the face of a very powerful parents’ lobby. Parents of developmentally disabled children hate the term “mental retardation” because of the pall of hopelessness that enshrouds it. The term is heavy with odium and somehow “autism,” though not a gateway to the sunny uplands, is less stigmatizing. This is why “MR” has virtually vanished from U. S. pediatric centers, and even though many of the autistic children will have subnormal intelligence, this is not the focus. Rather, the classic autistic characteristics of social isolation and a tin-ear for social cues occupy center stage, and intelligence is simply not dwelt upon.
In a way, this is progress. It gets attention off brain power and onto social issues that are much more important to the child. The mania for intelligence testing that gripped US society in the first half of the twentieth century is now easing as we become more interested in helping children fit in than in prepping them for exams. The contrasts between the US and China or Korea could not be more dramatic: There, exam-passing is everything and subnormal intelligence represents a humiliation for the family. The children are kept indoors and experience social death. Here we believe that every child is precious.
So, this is progress. But it is not science. There is nothing wrong with accommodating parents’ very real and very bruise-able sensitivities. But to reduce the complex world of developmental disorders to “autism” makes it harder to do research. The patient population becomes too heterogeneous to study.
Look at what has happened to “depression.” The term has swollen so badly out of shape that anyone the least bit dysphoric will be diagnosed as “depressed” and given “antidepressants” that, in many cases, are quite useless. Lots of different disorders are at play here, some quite poorly defined, and rather than throwing everyone into the depression tub we should be trying to make distinctions in order to come up with specific treatments.
Similarly with “autism”: When every child on the pediatric service becomes “autistic,” the term loses its meaning: genetics and social causation become jumbled together. Treatment responsiveness is lost sight of. For example, lots of kids with the autism diagnosis also have symptoms of catatonia, including self-injurious behavior (SIB). SIB is quite treatment-responsive. So are other forms of catatonia. “Autism” is not highly treatment-responsive, though various psychotherapies may relieve some of its symptoms.
There is a huge irony here. Autism was well described in the European psychiatric literature in the 1920s, and it was certainly differentiated from mental retardation. But the autism craze over here was initiated in 1943 by Leo Kanner, at Johns Hopkins University, a European who claimed to be describing a new disease. Kanner included no references in his paper, although he was Austrian-born and read German (Shorter & Wachtel, 2013).
So as the autism star rose here, the MR star fell. In Europe by contrast, the two diagnoses existed side by side. (It is true that in Europe after the Second World War, developmental psychology and psychiatry were swallowed up by the Freudians, who were more interested in toilet training than in social communication and isolation.) And to this day in Europe, “MR” is a respectable diagnosis.
So what you gain on the swings, you lose on the roundabouts. Here “autism” now rules the developmental roost. There, “MR” is still au courant, though the diagnosis—however scientific—is a cruel and unfeeling one. Here, physicians are cowed by the political power of the parents’ movement. There, the authority of the “Herr Professor Doktor” is unchallenged. Two worlds.