Johns Hopkins Medical Center, where the original cases of autism were discovered, can’t find the file for at least one of those 11 children described by child psychiatrist Leo Kanner in 1943. Presumably, several more, if not all, of the 11 case files that formed the basis of that landmark paper, “Autistic Disturbances of Affective Contact,” are now lost to history.
This irreplaceable loss came to light after the brother of one of the original cases asked Hopkins to find whatever information was available on his family member, now deceased. We had identified the case and contacted the brother, who agreed to ask Hopkins for the records, to which he is legally entitled, in the belief they could offer important clues to the origins of the disorder.
But there will be no clues from Hopkins, because after an exhaustive search, the medical archives turned up empty.
I’ve long called on Hopkins to take a tiny sliver of the millions in autism grants it receives every year -- some from taxpayers like you and me -- to study those early cases right under its nose. From the outside, I and Age of Autism Editor at Large Mark Blaxill have (with invaluable help) been able to find several of the first 11 -- identified in Kanner’s paper by a first name and last initial -- and dig for what may be useful new information (see “Mercury Rising” on our home page).
My point here is not to restate what we think we see in those early cases, but just to say that for anyone who cares about the causes and possible treatments for autism, the earliest or “index” cases are extraordinarily important. The early cases of AIDS helped the CDC establish it was a sexually transmitted microbe. What might the first cluster of autism cases indicate?
Kanner, the dean of child psychiatrists, immediately understood the historical importance of this cluster of children. His 1943 paper began:
“Since 1938, there have come to our attention a number of children whose condition differs so markedly and uniquely from anything reported so far, that each case merits - and, I hope, will eventually receive - a detailed consideration of its fascinating peculiarities.”
Kanner himself wrote a follow-up of the 11 children in 1971. So at that point, the files clearly were still in someone’s possession at Hopkins, and their importance as the herald of a distinct and rising childhood disorder was obvious. It’s not good enough to say these cases are so old that no one could be expected to keep track of them.
Yet no one at Hopkins has ever expressed interest in revisiting them, and now it seems they’re gone for good. I first got an inkling of how bad things might be when I talked to a researcher a couple of years ago. In the 1980s, she decided to study autistic adults and sought out Kanner because several dozen of the 200-plus cases he eventually identified were old enough to be adults by then.
So what happened? The researcher told me that Kanner, who was dying of cancer, referred her to "a social worker who kept the records in their attic.”
In their attic? God help us. At that point, if not before, you would think someone would have had the sense to reclaim them for the Johns Hopkins Medical Archives -- for medical history.
Maybe before launching another inconclusive multi-million-dollar epidemiological study, someone at Hopkins ought to go look in someone’s attic. If they contact me, and agree to use this information for research that is open and transparent, I’ll be glad to tell them who to ask. Don’t hold your breath.
Dan Olmsted is Editor of Age of Autism.