Olmsted on Autism: Hopkins Loses Early Case File
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.
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.
Those missing right of replies, were always stuff that would not be useful for the pro-vaccine standpoint.
Over the years that I went up there, I'd find really interesting old books on the "biff out" table, many of which are now in my library. Sometimes medical students picked them up and make a buck selling them on ebay, or trademe.
If you think this is new, it's not.
Here is an example you can check out for yourself. Go to your medical library, and ask to see the United States Polio Surveillance Unit's bulletins, from 1955 to 1970.
They will be listed as "missing".
Every single medical library in USA, that someone checked out for me, and New Zealand (and possible other countries) has them listed as "missing".
There is only one place you can see them, as far as I know, and that is in the AMA library, and they are listed as having top security clearance requirements to see, according to someone who tried to access them.
Why might this be? When he was alive, Dr Ratner had copies of them at his home. He gave me many of the years' data I wanted. They clearly showed that from the inception of the SALK vaccine, to it's discontinuation, the vaccine had MINUS efficacy and was actually causing more polio in the vaccinated than in the unvaccinated.
Any studious person looking at Government stats in retrospect, would be able to easily see that the polical and media canonization of SALK and his vaccine was a mirage of duplicity upon duplicity.
I have NOT known a time, in the last 25 years, where medical libraries have made it easy to do any meaningful research.
For instance, for the last 10 years or so, if I want to look at historical issues of BMJ or the Lancet inside Auckland's Philson medical library, I can no longer go down to the third floor, start at the beginning, and "see" if there is something that might be interesting.
Oh no. NOW I have to place an official request at the main desk, asking for a specific bound book, which means I have to know what I want and which volume it is in. This will then be brought at a specified date and time, from the locked storage "dark hole", which is in a remote place a long long distance from Auckland medical library itself.
Can I actually GO to this dark place, and sit and study? No, of course not. That would make it much to easy for me to find stuff they don't want me to find.
Unless I have appropriate credentials or specific authorization, or am a suitable bigwig, any research is made as difficult as possible.
In terms of hospital files in this country, anything over 15 years of age, is automatically destroyed.
Parents should know that they should keep their own running paper copy of all medical files, in their own home. If they don't, then don't expect either a hospital, or a doctor to do that.
After all, they too have "budget constraints".
Posted by: Hilary Butler | April 01, 2009 at 06:31 PM
Posted by: Sakura | April 01, 2009 at 04:23 PM
Posted by: John Stone | April 01, 2009 at 03:56 PM
Posted by: Maggie | April 01, 2009 at 01:33 PM
Maybe that social worker had the right idea, moving files offsite. Many AoA readers already know that in 1955 an Illinois physician, Dr. Herbert Ratner, stored vials of Parke-Davis polio vaccine in his refrigerator. Amazingly he kept them for more than 40 years. In 1999 researchers unsealed the vials and testing found that the vaccine was contaminated with SV40 -- a cancer-causing virus from the kidneys of green monkeys.
Here is a page from the book "The Virus and the Vaccine" by Debbie Bookchin & Jim Schumacher.
Posted by: nhokkanen | April 01, 2009 at 12:41 PM
Eric Holder said that, when it comes to race, Americans are cowards. I tend to agree with him because we've seen evidence of it and the same model can be extended to other things. When it comes to autism (or anything historically damning), the same holds true. Holder also invited Americans to re-try FOIA requests which were blocked under the Bush administration.
Maybe the family member who is looking for the missing Kanner file could try the DOJ next.
Didn't EPA "libraries" do a big shred a few years ago? Invaluable medical journals and documents were being found in dumpsters miles from the EPA research facilities. Budget constraints were cited, wink, wink.
Posted by: Gatogorra | April 01, 2009 at 11:22 AM
Jeez they push and shove and throw eggs at the G8 because people are broke, yet when children get broken into pieces...
Yeah just toss all that research into the trash, right along side our kids, it really seems that no one really gives a crap.
Happy Awareness Month, tell me about it!
Posted by: bensmyson | April 01, 2009 at 10:51 AM
April 9, 2007
Library dumps valuable medical books in skip
Hundreds of important journals dating back to the early 19th century have been thrown away by Europe’s largest psychiatry library, including volumes signed by the doctor who founded its parent institution.
More than 50 scientists and students at the Institute of Psychiatry in London have signed a petition calling for the reorganisation of its library to be suspended, after books that appear to have belonged to Sir Frederick Mott were rescued from a skip.
Well, it just so happens that Sir Frederick was one of the few who listened to what troops were saying and looked for the 'environmental factor' causing the mysterious new medical condition called shell shock.
Posted by: Kerbob1 | April 01, 2009 at 07:27 AM