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Tuesday, August 09, 2005

The Age of Autism: New in name only?

This week's column about the first autism diagnoses brought a quick response from longtime autism researcher Dr. Darold A. Treffert. Treffert is past president of the Wisconsin Medical Society and a psychiatrist at St. Agnes Hospital in Fond du Lac. He wrote the book "Extraordinary People: Understanding the Savant Syndrome."

Our view is that the first autism diagnoses in the 1930s appear to represent something new -- because Leo Kanner, the psychiatrist who identified the early cases, called them "markedly and uniquely different" from anything seen before. Kanner was the leading child psychiatrist of his day.

Treffert, who met and was inspired by Kanner, says autism in fact has existed throughout history.

Here is his letter.

While Leo Kanner named autistic disorder, it did not begin there any more than many medical conditions recognized and named by doctors (including Asperger's, Down's Syndrome, Turner's Syndrome, Crohn's Disease, Grave's disease, Cushing's syndrome (etc. etc.) began when recognized and named.

You are right to go back in time a bit to look at autism pre-immunization-debates, but you are not going back far enough. You need to go back at least another 53-plus years to the very astute and before-their-time observations of Dr. J. Langdon Down in 1887 regarding disorders he called "developmental" way back then.

Most astoundingly, Dr. Down differentiated, in these "developmental" disorders (a term we use today) between early onset and late onset (regressive) autism! I refer you to my posting "Dr. J. Langdon Down and Developmental Disorders" on the savant syndrome Web site at www.savantsyndrome.com. Formal publication of those findings is under way and in press.

The point is, while Kanner named the condition, it did not begin with him. I had the opportunity to meet with Dr. Kanner when he was a visiting professor at University Hospitals in Madison during part of my training there. He was a very graceful, gentle and kindly man, with much to say about autistic disorder, and I valued his observations. He in fact tapped some interest in me in that unusual condition, an interest I have followed up on now, all of my professional life.

I had the opportunity to develop a Children's Unit as my first "job" as a psychiatrist, and it was there I met my first savants among the autistic patients we had on the unit. It was there also I carried out the statewide study on the epidemiology of infantile autism and confirmed, at that time, the figure of 4.8 per 10,000 cases which, like Rutter's in England, is often quoted.

I also confirmed that in that group -- at that time generally referred to as Childhood Schizophrenia -- only about 25 percent were cases of Kanner's classic autism.

Germane to the present debate was the circumstance that among the cases of autism on our unit (1962) were cases of late onset, regressive autism.

These were patients, like Down's in 1887, and like Kanner's 50 years later, who began to regress after a period of normal development.

These constituted roughly 25 percent of our cases, I would say. In each and every case, the mothers identified some event as the trigger for the regression. I remember distinctly one mother tying the regression to the child falling off the pier and nearly drowning; another tied it to when the child was hospitalized for tonsils-and-adenoids surgery; another to the time the child got trapped in the silo.

Down tied it to the "second dentition," temporally at least. And there seems to be a relationship, again temporally at least, to immunizations (whether there is more than a temporal relationship to immunizations remains to be fully explored). The point is, each parent always ascribed the abrupt and sudden regression, naturally and understandably, to some event.

So I think it worthwhile to go back in time to compare autism today with autism at an earlier time. But you need to go back farther than Dr. Kanner, observant as he was. And if I had the time, I would go back further than Down, also looking under different labels, just as I had to look under the different label of "childhood schizophrenia" in the 1970s to find a group of cases that clearly were what we now call autistic disorder.

As I said in my 1970 article, the beginning of wisdom is to call things by their right name. And we do a very poor job of that in autistic disorder. Also, in medicine and elsewhere we keep "rediscovering" the obvious and pronouncing it "news." Hence my perpetual look backwards (older people often develop an interest history).

I was somewhat amused to see news reports this week reporting the "new" discovery based on Dawson's work, that some forms of autism are "regressive" in children who reached developmental milestones and then "regress." Really! There is nothing "new" about that.

They also reported the astounding revelation that there may be more than one cause of autism. Really! That's not news either, but it is typical superficial medical reporting where someone did not do their homework.

Dr. Down reported regressive autism 125 years ago (based on his 30 years of observations) and, without doubt, autism, like mental retardation, has been around as long as man has been around. Now we need to sort out this condition by its right names, sort it out into its several causations, and gently have "mainstream" medicine and "alternative" medicine come together, work together, respect each other and gradually forge out effective treatment tailored to specific etiologies.

Three axioms have guided my career: 1) The first step in treatment is to make a diagnosis. 2) Listen to the patient (or the parent) for he or she is giving you the diagnosis. 3) The beginning of wisdom is to call things by their right names.

In the research on autism we have not a very good job with any of those axioms. That's what keeps propelling me along in this elusive search.

This ongoing series on the roots and rise of autism aims to be interactive with readers and will take note of comment, criticism and suggestions. E-mail: dolmsted@upi.com

Copyright 2005 by United Press International

Posted by Becca

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