Writing a ‘new history of autism’

Listen to the interview here, or read the transcript below:

Brady Huggett

Hi, my name is Brady Huggett, and I’m the enterprise editor at Spectrum. And this week, we are publishing a long article titled “The new history of autism,” written by David Dobbs. And we wanted to sit down with David and talk about how he did this work. What did he read? Who did he speak with? What were the names that have been lost to time, these people who made major contributions to the field of autism and didn’t really get the recognition that they deserve. And so that’s what this is. The first part of the article is published on our website now. But here I am talking with David Dobbs about his work. Hi, David. So, first off, just thanks for joining and agreeing to talk about your article. But the first thing I think we want to ask about is, you know, why was this a topic that you’re interested in? And why did we want to do this article in the first place?

David Dobbs

I got a hold of this at the invitation of Spectrum, who said that they wanted a contemporary history of autism, that is. And I knew that this was, this history was, sort of liquid at the time, with some new findings suggesting that there were new players in the history that had gone overlooked. That piqued my interest right away. And it turned out to be a fascinating kind of pool to dive in.

Yeah, the idea of a contemporary look at the history of it, I mean, most people probably know there’s a really big book called “Neurotribes” out not long ago, I think 2015. And that seemed really comprehensive, but you’re saying there were new things that have been discovered since the book came out?

That is true. Some of the, some of the new stuff came out in that book, actually, and certainly this, this fairly short article, can’t compete with the scope of Steve Silberman’s wonderful book, which is about 400 pages long.

Yeah.

But yes, these things have been breaking in the last 5 to 10 years, especially a little bit older than that, too. But especially in the last 5 or 10 years, they’ve come into more focus as more people took a look at them and dug into the records of the contributions of people who really hadn’t got credit before, in the history of autism studies.

Yeah. So how did you actually go about doing it?

Well, I just, I hit the primary sources as much as I could. I reread sections of Steven’s book and went into the papers. One key early paper was a paper by John Elder Robison, on the role played by Georg Frankl and Anni Weiss, in particular, two of the three people that have been most overlooked. And there were some other excellent papers, a little bit more obscure than John Elder Robison’s, by two scholars that, a few years ago, brought to the fore the contributions of Grunya Sukhareva, a Russian psychiatrist who worked, beginning in the 1920s, on kids who have what we would now call autism, autistic traits. And those two Sula Wolff, in 1996, had published a translation of the Sukhareva paper on the first five, six people she wrote about. And then it was only in 2019 that someone else translated and published the second paper on five more people who had autism in her practice. So there was a lot of diving into just academic papers and academic journals to dig this out.

Yeah, you went into the literature, is what you’re saying.

Yeah. So it’s been reading the literature. That’s where most of the fruit came from.

And so what were the main findings?

Well, this was all new to me, as I said. I had heard and read short pieces on some of these people, but I hadn’t really quite registered the importance of what they contributed and the critical timing in the way they did. The biggest figure, take-home figure out of this, to me, is the psychiatrist Grunya Sukhareva, who I mentioned earlier, who was Soviet psychiatrist, one of the most renowned in Soviet Union and Russia, from the 20s into through the rest of her life, which ended, I believe, if I’m remembering right, in the 1970s. And she worked at a children’s clinic that was also a residential treatment place for young kids who had all kinds of psychiatric issues. And she identified 11 children there who had a certain sort of type, a set of traits in common, that kind of overlap and took different instantiations in different kids. But for her, marked out a sort of type of patient that hadn’t been identified before. Now that’s exactly what Asperger and Kanner did almost 20 years later. But she did this in 1926, in 1927, she publishes those two papers. To my eyes, she’s clearly the first person to do this. And if we want to use the nomenclature that was long used for Kanner, who was called the father of autism studies, then the real parentage credit goes to the Grunya Sukhareva, who published a paper similar to his in many ways, almost 20 years earlier.

So the big — and you mentioned this in the article — that the big question is, is it possible that both Asperger and Kanner never came across her work? And you suggest that’s not possible.

Well, I believe I wrote that it is possible.

But not plausible.

But unlikely, or implausible. It seems implausible, because she was — now, the Soviet Union was isolated in some ways from the rest of the world while it was the Soviet Union, and this extended to its medicine. At the same time, it’s not as if no one had ever heard of Soviet psychiatry or even Grunya Sukhareva. Kanner, for instance, cited a different paper by Sukhareva in one of his papers but did not mention her in his paper he wrote about autism in 1943 that put autism on the map and won him his fame. She was not mentioned there; there were only 11 or 12 references in his paper and no co-authors. That was the kind of the citation customs of the day — they were far less expansive. So you have to kind of go through your fingers to see what all had to happen for him to not know of her. Again, it seems unlikely because we knew he knew of her work.

And he, he’d read the journal that she’d published — I mean, he may, he may not have read that specific journal that included her work, but he’d read that journal, so it wasn’t as if it wasn’t accessible to him.

He’d read that same journal in which she published her opinions, yeah. He had read it because he cited other papers from it and other papers of his. So she was part of the literature stream that he was familiar with, he and his team. It somewhat beggars imagination to think that they wouldn’t ever have come across her autism papers. But it’s hard to reconstruct things as they were then. And yet, there it is. He didn’t credit her and neither did Asperger. And Asperger was closer, being in Vienna, was kind of closer to the literature that Sukhareva read, and almost certainly was exposed to some of the journals she published in. But he did not either cite her in any way or give her any mention. So this is someone who wrote papers in 1926 and 1927, that were, in a sense, echoed by Asperger’s paper — Kanner’s paper of 1943 and Asperger’s of 1944. Yet neither gave her any acknowledgement. It’s a very strange thing. In Asperger’s case, some of this might have been done — this does not excuse it; it could explain it — some of this might have been the virulent antisemitism that was at work in Austria when he was writing and publishing his paper. This is a time when they were firing Jews just because they were Jews. And they were rarely cited by fellow scientists at the time.

Yeah. Yeah. And Grunya was Jewish.

And Grunya was Jewish. Exactly.

So that’s, that’s sort of the main figure that seems to be lost to history. But there were a couple others that you dug out as well. Frankl and — yeah, go ahead.

There are two very interesting characters who have kind of like Zelig-like presence and absence in this story. They were Anni Weiss — W E I S S — and Georg Frankl, who both worked in Asperger’s practice, when he was coming into contact with the kids he would write about in his paper. And then Frankl moved, in 1937, to the United States and joined the practice — excuse me, 1938 — and joined the practice of Kanner, just as Kanner was beginning to focus on the patients, the people he wrote about in his 1944 paper. So, Frankl, it seems, and John Elder Robison, as well as Stephen Haswell Todd, another scholar who wrote a dissertation about this — both of them make great arguments that Frankl had two contributions. One was his identification of what he called affective, a lack of affective contact, that has emotional contact among kids — a handful of children he’d seen in both Austria and then later the United States. And this was kind of one piece of the puzzle that became put together by Asperger and Kanner, one of the traits was this remove of these children. And he wrote about that, was writing that writing and thinking about that, while he was at Asperger’s practice. He then moved to the United States, where he pursued, he actually worked on a paper about that while he was working with Kanner. And so that’s one idea he contributed, at least by osmosis, to both Asperger and Kanner. The other thing he brought to Kanner’s practice, of course, was experience with Asperger’s patients, because he was one of the frontline clinicians in Asperger’s practice working with these children that Asperger later wrote about. Likewise, he was a frontline clinician in Kanner’s practice, as he worked with the children that he would write about. And he knew these children very well, as did Anni Weiss. Because both of these clinics were like Grunya Sukhareva in that they had a day clinic in which day patients would come. But it was also a residential setting where kids stayed and studied and lived 24/7, with the staff watching them and working with them, teaching them and coming to know them really well. Yeah, intimately. I mean, they had access to them for 24 hours a day; you’re going to learn a lot. Yes, yes. And they were so they were just really immersed in this, Frankl and Weiss.

Correct me if I’m wrong, but I also remember that Frankl eventually moved away from the field and didn’t study it any longer. And, it was tied, I think, to, you know, when he was doing that work, it was a rough time in his life, and he didn’t want to revisit it anymore. Is that right?

It was. He had, he had struggled with these papers. He published one alongside, in 1944, alongside Kanner’s, kind of, you know, seminal paper in which he first wrote about his 11 patients. And it was this lack of affective contact in some children. But he had been working on that while he was in Austria, while it was unraveling and becoming a sort of hellscape that, that he left, came to the United States and was working under, you know, happier circumstances, certainly in Kanner’s ab, but still struggling with these ideas. And he did leave that work behind, not long after he came to Kanner’s clinic. He worked there for a few years and then moved elsewhere just to run a psychiatric clinic rather than work directly with patients. So really kind of disappeared into the mist, he and Weiss did. But their contributions to both Asperger’s and Kanner’s practices and perspectives were really quite substantial, since they were both part of the Asperger’s clinical team that discussed these cases. And Frankl was part of Kanner’s team as well, and they had both written on these issues.

Yeah.

It’s funny. Just to get at the material that was there and feel confident that I’d gotten it all, as much of it as was out there, I had my hands full. I think I read about 60 papers to do this thing. And, and you know, towards the margins of them, they kind of bled over. But it was absolutely fascinating look at how clinics of that time worked this intimate immersion in these children’s lives and how sensitive all three of the clinicians I was talking about — Sukhareva, Frankl and Weiss — how sensitive they were to these children’s experiences. Their patient accounts that are in their papers, they read novelistically. You don’t see writing like this with that kind of sensitivity very often these days, unfortunately.

Yeah. So, I mean, history is always being reinterpreted, of course. But do you feel like in this case that you have gotten it all? As you said, you just read 60 papers. Do you feel like this is pretty exhaustive?

Oh, well, yeah. Up to a point. I mean, there’s a book to be written here, probably. It seems to me almost certainly about Grunya Sukhareva. It would take someone who either had a very friendly Russian translator or knowledge of Russian oneself to do that. There seemed to be even in the last month since I’ve done this, there has been some new photos found of Sukhareva. So I think that they’re still — my sense is there is still Sukhareva material to unearth and go through and identify, among what she did about this, that could sort of enrich the picture of her contribution. But her two papers, one on six boys and then one on five girls, from 1926 and 1927, are really unrecognized landmarks in the history of psychology and autism studies.

And we have those new photos of Grunya up on our website, actually. OK, listen, that’s perfect. Thank you. Thanks for taking the time to talk to us about it. And it’s really nice work. Thanks a lot.

Thank you very much.

Cite this article: https://doi.org/10.53053/AVIL7220

Spectrum: Autism Research News

Writing a ‘new history of autism’