Autism: Indeed New In Name Only · Aug 10, 09:01 PM

Within hours of submitting my latest comment to the Huffington Post, in which I referred to Dan Olmsted and his recent series of newspaper articles on autism, I came across the latest installment in that series, The Age of Autism: New in name only?, published that very day. I was delighted to find there a letter from psychiatrist Dr. Darold Treffert, former president of the Wisconsin Medical Society, consultant to the movie Rain Man and author of Extraordinary People: Understanding Savant Syndrome. Dr. Treffert currently serves on the staff of St. Agnes Hospital in Fond du Lac, Wisconsin, and is a Clinical Professor of Psychiatry at the University of Wisconsin Medical School, Madison. He has dedicated his career to the study of the phenomenon of the savant—the juxtaposition of severe mental handicap and prodigious mental ability. On his website, www.savantsyndrome.com, Dr. Treffert reviews and summarizes the world literature on this topic since the earliest reports, describes more recent cases, catalogues and categorizes savant abilities, and offers a bibliography and profiles of individuals with savant syndrome.

I so enjoyed Dr. Treffert’s letter that I wrote to him this morning, requesting permission to republish it here. His reply resonated with a profound appreciation and respect for those autistic individuals and their families whom he has come to know in the course of his work. Dr. Treffert quoted Sir Isaac Newton:

I do not know what I may appear to the world; but to myself I seem to have been only like a boy on the seashore, and diverting myself in now and then finding a smoother pebble or a prettier shell than ordinary, whilst the ocean of truth lay all undiscovered before me.

This sentiment is echoed in the doctor’s own experience:

After now 40+ years of looking at autism, and 30+ years of looking at savant syndrome, as I say in the book, “I too feel like the boy on the beach fascinated with the smoother pebble, the one that is different enough from all the other pebbles to stand out, to be noticed and to be admired. The savant is a smoother pebble on a beach where all the other pebbles look much more alike. Meanwhile an entire ocean of truth, waiting to be discovered lies in the background. Let us… take a closer look at the pebble itself—its specialness, some of the forces that have helped give it its unique shape; how we can study and admire it without forfeiting its individuality; and how we can be sure that, in a world that seeks so intensely to have all the shapes the same, we not only appreciate this different shape just as it is, but do so without requiring it to change so it is exactly like all the others…”

The families of the savants I have met “focus not just on what their child can DO, but also on who that child IS—special, unique, extraordinary people with souls shaped a bit differently than the souls of others. But in those special shapes lies particular beauty, like the beauty of a smoother pebble one might find on a beach. Whatever questions of science might be answered by looking at the savant, they are equalled or excelled by lessons in caring, belief, determination, appreciation and acceptance that the savant, and their families can teach us.”

Many thanks to Dr. Treffert for granting permission to reproduce the following letter to Dan Olmsted; and respect to Dan Olmsted for sharing with his readers such a concise and well-informed rebuttal to the argument that autism did not exist until the twentieth century.

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.

Darold Treffert, M.D.
St. Agnes Hospital, Fond du Lac, Wisconsin
Clinical Professor, Department of Psychiatry
University of Wisconsin Medical School, Madison

Reproduced by permission of the author.

Comments


  1. Autism Diva loves Dr Treffert.

    She wrote to him about 3 years ago with a compliment about how nice a piece of his writing was, and also noting a problem she was having relating to autism.

    He was so kind and gracious and even encouraged Autism Diva to contact him again.

    Autism Diva has his book, too, and has quoted him here: http://autismdiva.blogspot.com/2005/04/dr-treffert-and-savant-syndrome.html

    Nice work, Kathleen, as usual.

    AD — Autism Diva    Aug 11, 01:58 AM    #