John Donvan and Caren Zucker Interview

John Donvan and Caren Zucker are the authors of “In A Different Key: The Story of Autism” and the where keynote speakers at the Autism Society’s annual conference in New Orleans. We asked them some questions about the book and what they learned from researching and writing it. Here are their responses:

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Your book includes virtually everything there is to know about autism – it leaves almost nothing out. Was this your intention from the start, or did the project grow as you got into it?

We did, indeed, set out to write a definitive history of autism – one that would lay out, year by year and decade by decade, what actually was happening in the lives of people with autism and their families as time moved forward – showing when and how such individuals were enriched or harmed by the way society responded to them. We do that through stories. So, “In A Different Key” is a social history, written to read like a narrative drama. That drama includes a lot: how autism was understood and misunderstood over the years; what research revealed; where civil rights were abused, as well as won; and how activism on the part of both individuals with autism, and their loved ones, continually changed the conversation about autism. As a rule, we describe controversies without taking sides, but we always report what we consider the best scientific evidence. We wrote to reach a readership much larger than the autism community itself, because it is our conviction – and a central idea of our book – that everyone, everywhere, plays a part in the continuing story of how autistic people are supported and embraced.

Your focus for much of the book seems to be on autism from the family’s perspective, including tales of severely affected individuals. Some other books focus more on high-functioning individuals on the spectrum. Do you feel the advent of the “spectrum” has taken needed attention and services away from those with greater needs?

Our book probably puts more focus on severely affected individuals than you’ll see nowadays in most recently published accounts of autism, or in movies and TV shows about autistic people. It is not to the exclusion of others on the spectrum – they’re in the book too – but it was on purpose that we made a lot of room for folks in the first group. We were very aware, while writing, that too many individuals with autism who cannot speak don’t get heard as a result. And yes, this can plausibly impact their access to support and services. We wanted to be clear: their lives matter too. That is why we worked at giving their stories more prominence than seems to be the fashion nowadays.

There is also this: through much of autism’s relatively short history, their stories actually were most prominent. “In a Different Key” moves forward in roughly chronological fashion, starting in the 1930s, when the concept of autism first started coming into focus, and showing how the “spectrum” model arrived relatively late in the story, gaining full adoption only in the mid-1990s. Between those dates, as our research revealed (and the corresponding chapters of “In A Different Key” report), the pivotal events in the autism narrative were spearheaded primarily by families – especially parents — as well as by teachers, researchers, therapists, lawyers and civil rights activists determined to reverse society’s stunningly cruel refusal to accord a severely affected person a place in the world. Moreover, most of the autism community’s greatest battles were fought and won before autism was understood as a “spectrum” disorder: the closing of institutions, the establishment of a legal right to education, the seminal behavioral research, the establishment of the first schools and the earliest assertion that support, acceptance and inclusion were moral imperatives. This is the forgotten truth of the story today: it was the fight for justice for the most severely impaired that opened the door for many of the opportunities existing today for people who are diagnosed with ASD.

That said, the entrance into the autism “conversation” by self-advocates, made possible by the adoption of the spectrum concept (also covered in the later chapters of “In A Different Key”), has been critically important in raising new levels of awareness and acceptance. The confident voices of people identifying as autistic, and speaking as agents for change, have done more to destigmatize the very word “autism” than any degree of activism that preceded them. This, of course, was a key goal of the early parent campaigners.  It is the self-advocates who are bringing that achievement home.

 

You start and finish your book – in very touching fashion – with the story of “autism’s first child.” How is Donald Triplett relevant today? Is he a success story that all families should strive for?

Donald has become our friend. We are grateful to him for sharing his story. Without doubt, its happy ending is uplifting, given how independently the 82 year old Donald lives today – golfing daily, driving wherever he wants, traveling the world – in a community that surrounds him with love. But we are always clear to say that the point of Donald’s story is not that all individuals can have outcomes to match his. Anyone who knows autism knows why that statement can’t work. No, the point of Donald’s story, and its relevance, is less about Donald’s individual progress than it is about that loving community. He grew up there in an era when most children like him were institutionalized for life, with dire consequences for most of them. Those are stories we also tell in “In A Different Key.” But Donald, accepted and appreciated in a safe corner of the world – his hometown – got to grow and flourish and reach his full potential with friends, happiness and possibilities. He was, and remains, autistic. But his experience shows how that fact becomes less and less disabling, when the rest of his world gets who he is, rolls with his differences, and cuts him a break when he does something, from time to time, that doesn’t “fit” the norm. That’s the lesson we want readers to take from Donald’s story: that all of us comprise the “surrounding community” for each person with autism. It’s Golden Rule stuff. We should all know where to take it from there.

There has been some pushback from one slice of the autism community about the way you relate the story of a father murdering his son with autism. Is this criticism misplaced? Can readers feel empathy for the father without endorsing what he apparently perceived as “mercy killing?”

We prefer to put real faces on the people in the story, so let’s use names right here. Dougie Gibson was a 13-year-old autistic boy who could not speak or take care of himself in even the most basic ways. In January 1971, he was shot dead by his father, Alec Gibson, who had become mentally ill, and who had convinced himself of two things: that he himself was about to die; and that the world would be brutally cruel to his severely autistic son once he was not there to protect him. This happened in Santa Barbara, California. We both researched this chapter, tracking down the few people who remembered the individuals involved (various family friends, Dougie’s sister, the district attorney who prosecuted the case). John, who wrote the chapter on this episode, kept photos of Dougie taped to his computer screen while he typed; he called Caren in tears the night he finished writing it.  A boy with autism was murdered. It was long ago but still tragic, and deeply upsetting to us, as journalists with beloved family members who have autism.

So why include it? To illustrate the abandonment of the Gibson family by society at the time. Before his sanity went, Dougie’s father, along with his mother, Velna, did everything they could to get him help, going literally broke in the process (eventually even selling their furniture) and being turned away by one school after another – public and private. This was because public schools at the time faced no legal mandate whatsoever to offer an education to someone like Dougie. Moreover, the family was not welcome to show up in any public space with Dougie: no movies, no restaurants, no ball games, no playgrounds where other children were present. This was the reality our book depicts, as it was faced by virtually every other family with an autistic child at the time (and it was only 45 years ago!).  Tragically, this reality was a large part of what pushed Dougie’s father over the edge. With Dougie and the entire family abandoned by society, deep in depression, he “did a terrible thing,” in his own words, because he had convinced himself that society could be even more horrible to his boy. The suggestion that it was a “mercy killing” was made by one of the cops who responded to the crime scene, trying to figure out what was going through Alec’s mind. We found that quote on a microfiche copy of the local newspaper eight years ago, in the Santa Barbara Public Library, dated January 5, 1971.

Do we feel empathy for Dougie? Yes.  He was a victim of something that should never have happened. Do we feel empathy for his father, Alec? Yes. He had a mental illness, and society offered him, Dougie, and the family none of the support it should have. We also feel empathy for Alec’s sister (who had never told anyone the story before we interviewed her, now in her 70s—she cried through the conversation). We feel empathy for the tiny local autism community in Santa Barbara at the time (we tracked down now elderly autism parents who knew the Gibsons, and interviewed them), whose members were horrified by what happened, but who understood Alec’s sense of abandonment and danger – without justifying it. Indeed, we think it’s pretty obvious you can have empathy for all of these people, and still be outraged both at the murder, and at the circumstances this family found itself in – which was our point.

As for anyone concluding from this that the Dougie Gibson story amounts to an endorsement of murder by us, or disseminating the idea that two seasoned journalists, who have reported on autism rights for years, are now suddenly rooting for “mercy killing” — we can only respond that every reader will have his or her own filters or motives, and that such a grossly distorted misreading of the chapter’s content is one we are confident that few reasonable and fair-minded readers will come to on their own.  Empathy is not endorsement. We’re pretty sure most of us get that.

Your book has some fascinating findings regarding Hans Asperger’s connections to the Nazi Party in Austria. Why is this relevant to the role he played in discovering and defining what came to be known as Asperger’s Syndrome?

Character counts, and books like ours are exercises in drawing characters, assessing their work, and considering their motives. We want to get them right. Hans Asperger, however, surprised us. That is because we had long subscribed to the wholly adulatory image of Asperger that had taken hold among most people writing about him: as a protector and defender of vulnerable children, and especially those he dubbed his “Little Professors.” These were the bright boys he described in 1938, and again in 1944, as showing behavioral traits that he described with the adjective “autistic.” The term “autism” was in use already, but only to describe a social withdrawal sometimes seen in people with schizophrenia. In his 1944 paper, however, which we read in English translation, Asperger could be seen using the word “autism” repeatedly in this new way, to talk about boys who were not schizophrenic, but who experienced various kinds of social challenges. Moreover, some well-regarded writers were suggesting that Asperger took great personal risks to protect all the children in his care from the Nazis, who were systematically murdering children with disabilities.

We found that Asperger inspiring. And we believed it. Then, because everything we knew about the man was written in English, and Asperger wrote only in German, we took our research to the next level: who was Asperger in German? That’s when we found out the shocking truth that had been sitting out in the open all along: the discovery by a highly regarded Austrian historian, Dr. Herwig Czech, revealing that Asperger had, on multiple instances, failed to stand up to the Nazis in dramatic fashion. There was discussion about this online going back at least to 2010, and we had missed it!  Now, we brought in a German-English translator, a friend, who helped us find out that, according to Czech, Asperger was involved in authorizing the dispatch of numerous intellectually disabled children to a known killing facility in Vienna. Stunned, we flew to Vienna to see the documents for ourselves, and there saw, indeed, Asperger’s own incriminating signature on the incriminating document. For us, the hero image was shattered.

After that, we began looking more closely at Asperger’s own writing in German. Other parts of what we increasingly saw as a crowd-pleasing myth did not hold up. For example, we confirmed that he never did call his charges “Little Professors,” though many biographers still claim he did. It’s a small thing, but in that “too good to be wrong” category. (We established that “Little Professors” was in fact coined by Chris Gillberg).  Also, we found a revealing anomaly in the English translation of his 1944 paper, which has him using the word “autism” nearly two dozen times, in sentences where, in the original German, he did not use that word at all. Why does this matter? Because it unintentionally sells Asperger as somehow being in tune with our time period when, tragically, Herwig Czech was turning up more evidence that he may very well have been a man of his time and place. He found several instances of Asperger signing his correspondence “Heil Hitler,” and trying to get into the Nazi Doctors League, a group devoted to purging the medical profession of Jewish doctors. He also applied to be official physician of the Hitler Youth of Vienna.

Why is this relevant? We are journalists. We can’t hide facts – and we saw the signature with our own eyes. Once we learned these things about Asperger, we could not unlearn them. And we could not hide them from readers, even if they might destroy a beautiful, inspiring thesis. That’s just journalism. When the facts get in the way of a good story, it’s the good story that has to be surrendered.

The question remains, of course, how to interpret these findings. On that, we remain extremely conservative. We could not interview Asperger, who died in 1980, or know what was in his heart, or specifically understand the pressures he was under during the Nazi era. Therefore, we cannot, and do not, conclude that he was evil, or, more importantly, that his clinical findings were unsound (to the contrary, we consider them a significant contribution). Nor do we think it fair to label Asperger a Nazi, because we know that, technically at least, it was not true: he did not join the Nazi Party.

At the same time, as journalists connected to the autism community – and, in Caren’s case, as a Jew who lost family members in the Holocaust – we believe that champions of Asperger need to exercise caution in how they depict him from now on. Unfortunately, the record is full of all sorts of attempts to minimize real crimes from the Nazi era by offering contextualization and moral somersaults designed to exculpate actions which, in plain talk, were simply evil in themselves.  We felt our readers should know what we learned about Asperger, because it is what actually happened. We trust they can draw their own conclusions about his place in history.

You recount a very interesting battle that went on between two giants in autism education, Ivar Lovaas and Eric Schopler. It isn’t the only rivalry in the autism field. Do you think there is a lesson for today, when different factions within the autism community sometimes clash over beliefs and priorities?

The autism community has spent far too much time fighting with itself. It was remarkable to us how such divisiveness stems from the earliest days of discovery, research, and activism. Even when the Autism Society was founded in 1965, it took less than two years for a splinter group to break off as a new and rival organization. The infighting happens, we think, because autism is interpreted by so many people in so many different ways. Competing perspectives result in competing agendas. That is natural, and by no means all bad — as no one group has all the answers. But it is also destructive to progress for everyone when outsiders to the community – who often control services, funding and legislative power — see its members squabbling among themselves, putting each other down, and coming across as tone deaf to any point of view but their own particular insight on what the agenda should be. Advances have most often been achieved when there is a united front. We believe that, no matter how many fault lines the community may discover within itself, there is – there is always – common ground to be found. Focusing on that, rather than the feuds, is how ever greater inclusion and empowerment of autistic people and their supporters will be achieved.

While your book is mostly driven by facts, you do seem to have formed a few opinions along the way. Behavior modification: Good. Group homes: Bad. Is this a fair assessment? What other opinions do you have from your research, as well as from your personal lives?

Actually, no, it’s not that our book sides with behavior modification. As with most everything else, we lay out what happened, and attempt to depict how certain ideas have risen and fallen in and out of favor with different people and factions at different times. With ABA, we trace its origins, and lay out the controversies which grew from that (especially the use of explicit aversives in the earliest days), and then we follow the dynamics of the way in which ABA gradually gained both a following among many parents and a great deal more respectability among educators – even as the content of ABA therapy evolved away from the strict discreet trial method. But that’s not all parents, and not all educators – and ABA still has critics among both groups, and among some self-advocates – all of which we report, again, because it is what happened.  The same is true of group homes. I think most readers will conclude that any group home is better than any of the horrendously warehouse-style institutions we describe in harrowing detail in the early part of the book. But we also point out that many advocates question any single “one-size-fits-all” housing solution.  Again, we leave it to readers to pick up what lessons from the past they want to apply to the future.

But that is not to say we did not form a few opinions. One, we already discussed, is that the autism world’s penchant for infighting has been too often destructive, but that it is also somewhat avoidable if people will focus on common ground. Another is that each generation tends to see the prevailing concept of autism as an unalterable truth. Once, it was the idea that mothers caused autism. For a long time, the idea was not even questioned. Nowadays, one of the accepted truths is that the spectrum model of autism – which is relatively new – is the last word in how to think about autism. Because we discovered so many other ideas rise and fall, we are not convinced that the spectrum concept – which basically argues that everyone showing autistic traits has the “same thing” – will stand the test of time and research. We can imagine (though not predict) that what is called “autism” today might split apart again as multiple “autisms,” going under different names. As a result, we’ve concluded that it’s not wise to get too dogmatic about any one conceptual framework.

In addition, we do argue explicitly, in the last pages of the book, that adults with autism remain underserved, with their needs unrecognized, and we do advocate for the turning of more attention to this part of the community.

What do you hope your book accomplishes for individuals with autism, their families, and society?

We want two things from the book. First, we want those who are in the community to realize that, even with the challenges they face today, that earlier generations succeeded in overcoming even more difficult obstacles, so that knowing this history will serve as an inspiration in the work still to be done. Second, we want the book read by people outside the autism world, not only so that they will understand what obstacles autistic people have faced for the past 75 years, but also so that they will recognize they all have a part to play in making those obstacles vanish.  On the big scale, they can join some activist movement. On the small scale, they can just be more open to forming real relationships with folks on the spectrum.

 

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Autism Society
The Autism Society is the oldest and largest grassroots organization within the autism community.
Autism Society

Autism Society

The Autism Society is the oldest and largest grassroots organization within the autism community.

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