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Autism

Conversations on Creativity with Darold Treffert, Part II: D

Darold Treffert, M.D. dispelling myths about autism

Darold Treffert, M.D. is considered one of the foremost experts on savantism in the world. Dr. Treffert has published two books on savant syndrome: "Extraordinary People: Understanding Savant Syndrome" in 2006 and "Islands of Genius: The Bountiful Mind of the Autistic, Acquired and Sudden Savant" in 2010. He has been a contributor to numerous articles in professional journals and has participated in many broadcast and documentary television programs around the world. In his efforts to raise public understanding about autism and savant syndrome he has regularly appeared on programs such as 60 Minutes, Oprah, Today, CBS Evening News and many others. Dr. Treffert was a technical consultant to the award-winning movie Rain Man that made "autistic savant" household terms and he maintains a very popular website at www.savantsyndrome.com hosted by the Wisconsin Medical Society.

Dr. Treffert was gracious enough to have a wide-ranging conversation with me. Over the course of a few days, we had a delightful time chatting about autism, savantism, genius, nature, nurture, intelligence, creativity, lessons he has learned, recent advances, and the future. This was one of the most satisfying and elucidating conversations I have ever had. I learned many things and it is my pleasure to share our in depth conversation with all of you. In my view, this interview demonstrates quite clearly the need for more compassion and research on all different kinds of minds and ways of achieving greatness.

In this second part, we discussed some common myths about autism.

SCOTT: What are some of the factors that separate early infantile autism from other forms of autistic disorder or other developmental disabilities?

DAROLD: I think early infantile autism has a specific constellation of symptoms that were described originally by Leo Kanner in 1943 where he lists a series of 15 or 20 things. These youngsters do not seek nor share affection, they avoid eye contact, they're spinning when they walk, certain gait disturbances, they really are in a world of their own. There is a constellation of what I call classic infantile autism symptoms.

I see a fair number of youngsters who have qualified for a diagnosis of autism, but when you see a classic case, it's a case that has all of those factors associated with it. So I have a fairly strict definition of early infantile autism. That is not to say that people who don't meet that classic description don't have autism, but we might do well to narrow our definitions, and our samples, down to groups that are very similar, because I think you're more likely to find the cause.

For example, if one wanted to find a cause of mental retardation, the more you limit your sample to people who have shared characteristics, let's say the characteristics of Down syndrome, the more likely you are to find the cause of Down syndrome within the broader classification of mental retardation. The narrower we define autism, and the more strictly we control for particular behaviors, the more likely we are to find what I think are the subgroups of autism. The beginning of wisdom is to call things by their right names in research.

Now, parents don't particularly care whether it's early infantile autism or whatever label the clinicians have put on it. All they want is treatment, and they want what's best for their child, whatever that is. And when it comes to treatment, it may be that there's much more shared interventions that don't make any difference what label we're putting on it.

But when we come to research, if we want to find out the cause of autism, we're going to have to be much more specific, and that's why when it comes to research, I'm fairly strict with respect to criteria. When it comes to treatment, I'm much more open to not making that differentiation.

But, for example, again, in mental retardation phenylketonuria is a disease that represents a small number in the large number of people with mental retardation, but if you identify the phenylalanine deficiency early, using the diaper test and you put that person on a diet, they will not be mentally retarded. They'll turn out normal.

Yet if you put all people with mental retardation on a phenylalanine diet, only those with that disorder are going to respond, so we need to be much more specific. I do use narrower definitions from a research point of view and less so from a clinical point of view.

But I think that if I could do any sort of research of autism that I wanted to do, at this point I would take a sample of classic, early infantile autism persons and compare them with what I call "classic late onset autism", individuals. I think we will find that the cause of those youngsters with autism who have autism from birth is probably different than those who have late onset autism.

These are kids who develop normally-- they develop language, they develop social skills, they are entirely neurotypical, or normal-- and then suddenly at age 3, 4, 5 regress and lose all those abilities. And I think those are two different processes that share the same final path, because if you looked at them at the end of the regression, they look the same as early onset.

But I think that if you took those two populations and compared every variable you could think about through pregnancy-- type of delivery, was anesthesia used, or not used, were spinals used, or not used, every variable that you could think of-- I think you might be able to sort out the variable in conditions. And that's why from a research point of view I think we need to be much more precise, and that's why I use terms like classic early infantile autism.

For more, see my article "Epidemiology of Infantile Autism".

SCOTT: Wow. You made a lot of very good points, and I wonder if this interview might lead to some new research. That would be really cool.

DAROLD: Well, I hope so. As I said, I think one of the problems with the definition of autism is we keep expanding it. It started as "early infantile autism", and then it became "autism", and now it's "autism spectrum disorder". I'm not opposed to that from the standpoint of trying to broaden our vistas, and so forth. But from a research point of view, the term autism is lost in specificity.

I'm serious, I wish someone would take up that task of early onset versus late onset autism, and investigate every variable we could discover. I would do it myself, except I don't have the time or resources to do it. But it would be a real beginning. It would not be sufficient to say that people meet the certain criteria in DSM IV because those criteria have also broadened.

Originally when we talked about language disorder it was a catastrophic language disorder. It's substantial, and from a treatment standpoint it's okay to keep diluting that term, but from a research standpoint we need to be much more precise. I wish somebody would take up the mantle of just that particular task.

SCOTT: Do you think the evidence, as well as your own clinical experiences, support the refrigerator mother stereotype?

DAROLD: No. When I got into psychiatry, and when I started this children's unit, the refrigerator theory was bouncing about. Bruno Bettelheim was very active still, and he had his center at Chicago that was "curing autism" and he was writing about this. I had started a unit with 20 youngsters, and I went to 40, and I noticed that the mothers of these autistic kids looked like every other mother I had ever seen.

A lot of our population came from rural areas, but they were not highly sophisticated, educated mothers who seemed aloof and unconcerned. We had kids with other kinds of disabilities and when I compared them on our unit, and when I looked at the mothers coming to visit their youngsters, they all looked the same to me. I didn't see any difference, nor did I see any difference from what I considered to be normal mothers.

That observation is what propelled me in the late '60s to to look at the epidemiology of autism in Wisconsin. And I did a study in which I tried to identify every youngster in Wisconsin that carried at that time the label of "childhood schizophrenia", because autism at that time was called "childhood schizophrenia".
I was able to identify 270 youngsters in the whole state. The reason I was able to do that was because childhood psychosis and schizophrenia was sufficiently rare that most children in the state who carried that diagnosis would have gone to the diagnostic center, which was a facility specifically set up for children with severe disorders, mental retardation, or mental disorders at that time, so I was quite confident that chances are that they were evaluated.

So I was able to identify 270 such youngsters, and I looked at everything I could look at in terms of socioeconomic level in both of the parents, the age of the parents, first born versus late-born youngsters, and I was able to look at a whole host of other complications of pregnancy and EEG abnormalities, every other variable that I could possibly look at.

I divided the population into three segments. I used a group that I called "early infantile autism", which was Group A, Group B was autism other than classic cases, and Group C were people with other central nervous system disorders, mental retardation, or organic brain syndrome, or whatever.

And it turns out that the mothers in all three groups were the same. To my surprise, there was no difference between them. The reason I did the study were really twofold: one was the refrigerator mother theory, and the other was, at that time Leo Kanner was writing that this condition seemed to be more common in highly-educated parents, and I thought that didn't seem to be the case in my sample.

However, to my surprise, the one variable that did sift out of all of that is that in the Group-A group, "classic autism", it turns out that the mothers and fathers did have a higher educational level than the others. But that was the only thing that filtered out of that whole thing.

It's a very long answer to your question about the refrigerator mother, but it triggers that long response because that's really what got me interested in autism and particularly the epidemiology of autism, and in looking at the refrigerator mother. The emotional coldness, aloofness, rejection kind of theory simply doesn't hold up. However, what does hold up is there does seem to be a higher educational level in parents of autistic youngsters, and I guess that's something that we need to look into.

I spend as much time in my own career looking at autism as I do at savant syndrome. The thing that might provide some background on what we've just been talking about is a paper called "Autistic Disorder 52 Years Later: Some Common Sense Conclusions". It's not that long, and if you read that, I think you'll see what I'm talking about in terms of my early interest and how I got to view autism as I have.

SCOTT: What do you think of the weak central coherence theory of autism?

DAROLD: I think weak central coherence better describes the autistic person than explains him or her. I do think they are not able to see the forest for the trees, and are not able to see the bigger pictures, therefore, they focus on some particular abilities or some particular bouts of behavior, and are repetitive and compulsive in those, and have trouble shifting. That is true.

But I think that some people try to explain the autistic individual saying they are bound by that kind of thinking, and they then speak in terms of cause rather than a characteristic. So that thinking probably accurately describes the savant, but I don't think it explains him or her. And I think people that are writing about weak coherence theory and savant syndrome make the assumption that savants are all autistic.

Where this begins to break down is when you see the central coherent thinking in savants who are not autistic, who have other dementia or other organic brain disorders. So, to the extent that it explains the savant, or it explains the autistic person, I think it describes them because clearly there are many savants who are not autistic.

Other parts of the series:

Part I, Defining Autism, Savantism, and Genius

Part III, Inside the Savant Mind

Part IV, The Origins of Extraordinary Savant Skills

Part V, The Acquired and Sudden Savant

Part VI, What Savants Reveal about Greatness

Part VII, The Inner Savant in All of Us

Part VIII, Lessons Learned and Recent Advances

© 2011 by Scott Barry Kaufman

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BIO:

Dr. Treffert completed both medical school and a psychiatric residency at the University of Wisconsin where he is presently a Clinical Professor of Psychiatry. Following his training he developed the Child-Adolescent Unit at Winnebago Mental Health Institute. It was there he met his first autistic savant in 1962. He then was Superintendent of WMHI until 1979 when he became Director of Community Mental Health services in Fond du Lac, Wisconsin where he now lives. Dr. Treffert has received honorary awards from the Wisconsin Mental Health Association, the Office of Alcoholism and Drug Abuse of Wisconsin and the Wisconsin Association for Marriage and Family Therapy. He has been listed in The Best Doctors in America, by peer selection, beginning in 1979. He resides in Fond du Lac, Wisconsin and is on the staff of St. Agnes Hospital in that community. His web site can be accessed at www.daroldtreffert.com.

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