ENTRETIEN EXCEPTIONNEL - Pour la première fois dans le podcast "Au Cœur de l’Histoire", l’historienne Virginie Girod reçoit une spécialiste depuis les Etats-Unis, pour parler des "enfants d’Asperger". Edith Scheffer est historienne, chercheuse associée à l’université de Berkeley en Californie, et autrice du livre Les enfants d’Asperger. Elle est l’une des rares à avoir travaillé sur le sort de ces enfants. En France, 700.000 personnes seraient concernées par les troubles du spectre autistique. Et l’un de ses troubles est appelé "le syndrome d’Asperger", en référence au psychiatre autrichien Hans Asperger. Ce psychiatre exerce dans les années 1940, en Autriche, alors que le pays vient de se faire annexer par l’Allemagne. Ses travaux de recherches sont alors influencés par l’idéologie eugéniste nazie. Pendant la Seconde guerre mondiale, Asperger rejoint le Spiegelgrund, un établissement pédiatrique, qui devient le second plus grand centre d'euthanasie du Reich. En tout, 789 patients internés au Spiegelgrund sont tués entre 1940 et 1945. Aujourd’hui une partie de la communité scientifique et des médecins militent pour que le nom d’Asperger ne soit plus associé aux "troubles du spectre autistiques".
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00:00 Welcome to the heart of history, I am Virginie Giraud.
00:03 Today, in France, 700,000 people are affected by the disorders of the autistic spectrum,
00:09 called Asperger's syndrome,
00:12 named after the Austrian psychiatrist Hans Asperger,
00:15 to whom we have dedicated a story.
00:17 You have surely heard this term before,
00:19 the name Asperger is almost back in the common language.
00:23 But what you may not know,
00:25 is that today, part of the scientific community and doctors
00:28 are advocating that the name Asperger
00:30 is no longer associated with the disorders of the autistic spectrum.
00:34 Because this psychiatrist, Hans Asperger,
00:36 who practiced in the 1940s,
00:38 took part, to a certain extent,
00:41 in the extermination of disabled children under the Third Reich.
00:45 So how did Nazi ideology model
00:48 the concept of Asperger's autistic psychopathy?
00:52 What were Asperger's methods of education?
00:55 And what remains of his research work today?
00:58 To discuss this, I have the pleasure of welcoming historian Edith Schaeffer,
01:02 associate researcher at the University of California, Berkeley,
01:05 and author of the book "The Asperger Children".
01:08 And I must say, we are very happy to receive her,
01:11 because she is one of the few historians to have worked on this topic.
01:14 And above all, it is our first duplex with the United States,
01:18 so we are very proud to welcome Edith Schaeffer.
01:21 Hello Edith Schaeffer!
01:22 Hello!
01:23 To start this interview,
01:25 can you briefly remind us what Asperger's syndrome is,
01:28 which the scientific community prefers to call "the autism spectrum disorder"?
01:33 Asperger's syndrome is difficult to define,
01:37 because it is a kind of a special diagnosis
01:40 to define people with different social difficulties.
01:44 People can present very different symptoms from one another.
01:47 This syndrome is considered to be part of the autism spectrum,
01:51 but in popular culture,
01:53 it is associated not with people who consider themselves to be disabled,
01:57 but with people who consider themselves to have superior abilities.
02:01 The Nazi period gave us a kind of a demarcation,
02:04 a kind of a dividing line,
02:06 a kind of eugenic distinction, at least in the United States,
02:08 between people with autism,
02:10 who we consider to be unable to find a job
02:13 or live independently,
02:15 and those who suffer from Asperger's syndrome
02:17 and who could be integrated into society.
02:20 And that's one of the findings that I make in my book,
02:23 this very eugenic consideration of the term.
02:26 Is Hans Asperger the first to use the term "autist"?
02:32 Did he invent it?
02:34 No, he was not.
02:36 And again, this was another surprising finding that I had in my book,
02:40 because he is regarded as the first person to invent the term in 1938.
02:45 But as a matter of fact,
02:47 the doctors in his clinic already used the term "autist" in the early 1930s.
02:53 And they were even using critical articles on children
02:57 who had autistic characteristics
02:59 several years before Asperger published his research in 1938.
03:04 And the key difference is that these doctors used the term "autist"
03:08 as a kind of adjective to describe various behaviors.
03:12 It was not a standard diagnosis.
03:16 Hans Asperger was much younger than his colleagues,
03:19 and less experienced than them.
03:21 And the key difference is that he called autism "pathology".
03:25 He even used the term "psychopathy",
03:27 which is a term with a criminal connotation in German.
03:30 So he had a much harsher definition of autism
03:33 than his senior colleagues.
03:39 At the time of the Second World War,
03:41 the psychiatrist Hans Asperger worked at Spiegelgrund,
03:44 a pediatric institution,
03:46 at the time when Austria was annexed by Nazi Germany.
03:50 Edith Schaeffer, what is the profile of the children
03:53 who are admitted to this pediatric hospital?
03:56 Can you tell us about some of these retirees
03:59 described by Asperger in his research?
04:01 Spiegelgrund housed a wide variety of children.
04:05 It was considered a welcoming place for children
04:08 with disabilities or physical disabilities,
04:11 such as deafness, amputated limbs, or heart conditions.
04:15 Some children were diagnosed with trisomy 21,
04:18 but many children did not have any particular pathology,
04:21 but very nebulous psychological diagnoses,
04:24 such as idiocy or mental weakness.
04:27 And about 10% of the children had no diagnosis whatsoever.
04:35 Among the children at Asperger's clinic
04:38 who were sent to Spiegelgrund,
04:40 many had behavioral disorders at home and at school.
04:44 They could be poorly raised,
04:46 they could be insolent with their parents,
04:48 they could run away or hang out with boys late at night,
04:51 they could skip school.
04:53 The oldest, for example,
04:55 were unable to hold a part-time job.
04:59 So Spiegelgrund was a place for children
05:02 who were not considered able to evolve in society,
05:06 whether for medical or behavioral reasons.
05:11 Among Asperger's patients,
05:13 as you say in your book,
05:15 some suffer from psychiatric diseases,
05:18 while others simply seem to be rebelling
05:21 because they challenge authority,
05:23 but without committing serious or reprehensible acts.
05:26 How is it that these two profiles
05:28 are diagnosed as autistic by Asperger
05:31 and end up being admitted to the same hospital, Spiegelgrund?
05:34 It's a fascinating question,
05:36 and again was one of the discoveries I made in my book,
05:40 this confusion between medical and behavioral labels
05:44 for children.
05:46 The way that I understand it,
05:48 is that psychiatry was not focused on conformity.
05:52 You had to look for a path to conformity
05:56 in the way that you did with other children
06:00 who would be at school with you or in the Hitler Youth.
06:04 And when they became adults,
06:06 they had to become productive members of society.
06:09 If you were not conforming,
06:11 whether physiologically or behaviorally,
06:13 you were considered a burden for society,
06:15 and you could fail to integrate.
06:17 So the diagnosis became blurred
06:19 between physiological and behavioral failings.
06:27 A child who was poorly raised at school
06:30 was considered as problematic
06:32 and as inapt to get a job or to join the army
06:35 as a child suffering from physiological failings.
06:38 And it was this idea that a child would be a lost cause
06:41 that made the difference.
06:43 There were children who could be educated
06:45 and others who could not.
06:51 And so, how do the psychiatrists at Spiegelgrund
06:54 evaluate the intelligence of children,
06:57 what can be saved, re-educated?
07:00 Because we see that from the late 1930s,
07:02 the doctors at this hospital
07:04 are very majorly supporters of the Nazi movement.
07:08 That is a very ironic question
07:10 because it was hardly a methodological, scientific process.
07:15 The Nazis thought they were scientists
07:17 when they issued their batteries
07:19 for formal, mathematical, textual and mathematical tests
07:22 to certain children.
07:25 These were traditional tests
07:27 where children were asked to associate words
07:30 or recite numbers.
07:32 But what mattered most during the Nazi period
07:35 were the rapid observations
07:37 of the doctors and nurses who treated a child.
07:41 And whether a child talked back
07:43 or whether a child did pee in bed
07:45 or whether a child was not wise.
07:48 These observations were consigned in a daily report
07:51 which was then used to determine
07:53 whether a child should be put to death or not.
08:00 So these were not scientific reports to Spiegelgrund,
08:04 but reports based on rapid interactions with children.
08:10 And so, how do doctors
08:12 make diagnoses of disabled children?
08:15 How do they see physical disability
08:17 but also mental disability?
08:20 One of the things I would like to explore in my book
08:23 is a new valuable concept,
08:26 which is the effect of Gemüt.
08:29 And bear with me,
08:30 Gemüt is one of the words
08:32 that is the most difficult to translate.
08:35 And in the Nazi period,
08:38 this term defined a kind of physical sense
08:41 of social connection between people.
08:45 A belonging between children
08:47 and a diagnosis of children who, according to them,
08:49 lacked Gemüt.
08:50 This capacity to create links with other children.
08:54 Children who do not have Gemüt
08:56 were not worthy of joining organizations
08:58 such as the Hitler Youth.
09:07 Asperger followed the footsteps of these Nazi psychiatrists
09:10 who identified children who lacked Gemüt.
09:13 He worked with these psychiatrists,
09:15 he attended their conferences
09:17 and he cited them in his work.
09:24 The difference is that these psychiatrists
09:26 did not use the term autistic,
09:28 while Asperger used it.
09:35 And how did doctors treat children
09:38 who suffered from a lack of Gemüt?
09:41 Did they set up special practices?
09:48 The doctors of the Spiegelgrund institution
09:50 had extremely violent methods
09:52 to try to control children.
09:54 And "control children" is really the right word here.
09:58 The goal was not to treat them,
10:00 but to house them and evaluate them
10:02 in view of their death.
10:04 These doctors of Spiegelgrund
10:05 used very violent methods,
10:07 comparable to those of the psychiatric asylums of the time.
10:10 For example, they dipped the children's heads
10:12 several times in ice water
10:14 or wrapped them in tight sheets for a very long time.
10:17 It even lasted for days.
10:20 The children could not move,
10:21 they were lying on their backs.
10:26 The doctors of Spiegelgrund also issued
10:28 what were called "vomit shots",
10:31 a substance that caused uncontrolled vomiting.
10:34 The children then vomited everything they ingested.
10:38 And if the doctors decided that a child was going to die,
10:41 the nurses mixed a overdose of barbiturates
10:43 in cocoa powder
10:45 that the children ate at will.
10:48 Then when they became too weak
10:50 because of these barbiturates,
10:51 they injected them with barbiturates
10:53 until the children fell ill and died,
10:56 usually from pneumonia.
10:58 The Spiegelgrund administration
11:00 made people believe that these children died from pneumonia,
11:03 when in fact it was due to poisoning,
11:05 to overdose of barbiturates
11:07 that caused pneumonia.
11:11 You write in your book "The Asperger Children"
11:14 by the Flammarion editions,
11:15 which is based on a very impressive documentation,
11:17 that the brain and neurology
11:20 are subject to special attention
11:22 under the Third Reich.
11:23 Why are the Nazis interested in these areas?
11:26 The Third Reich put a tremendous emphasis on conformity
11:30 and the creation of citizens.
11:33 It was a productive society for the people
11:36 and had little tolerance for people
11:38 considered non-conformist
11:40 on the physical, social and mental level.
11:43 In my book, I call the Third Reich
11:46 a diagnosis regime,
11:48 because the Nazis
11:50 sorted people by several criteria.
11:53 If they were Jewish, homosexual,
11:56 from the Roman communities,
11:59 if they were lazy,
12:01 their life was not worth living.
12:04 It did not concern only children.
12:07 All those who were considered
12:09 as deviant by the Nazis
12:10 were pathologized.
12:12 And neuropsychiatrists
12:14 were actually the doctors
12:15 who were highly involved
12:17 in the program of killing children.
12:20 Do you think that the Nazi ideology
12:22 influenced the work of Asperger
12:24 on autistic children?
12:26 Absolutely.
12:28 Asperger's definition of autism
12:30 was increasingly shaped
12:32 by the fascist ideology.
12:34 In 1937,
12:36 in one of his articles,
12:38 Asperger wrote that children
12:40 are too different from each other
12:42 to be able to establish
12:44 a universal diagnosis.
12:46 However, just months after
12:48 the Nazi annexation of Vienna,
12:50 Asperger made a diagnosis
12:52 on his own children.
12:54 He said that the children
12:56 were not as different
12:58 as they were before.
13:00 Then, in 1940,
13:02 he issued another definition
13:04 of autism,
13:06 much more focused
13:08 on social relations.
13:10 He described his children
13:12 as abnormal
13:14 and was much harder
13:16 in describing them.
13:18 Then, in his founding article
13:20 in 1944,
13:22 in which he gave
13:24 his final definition
13:26 of autism,
13:28 Asperger said that his children
13:30 represented a danger
13:32 to society.
13:34 He even said that they were
13:36 unable to integrate into society,
13:38 which is a pure and simple
13:40 fascist rhetoric.
13:42 It is therefore possible
13:44 to trace his publications
13:46 throughout the Nazi period
13:48 and to observe the way
13:50 he gradually absorbed
13:52 Nazi rhetoric.
13:54 In the context of the Action T4
13:56 program, the Nazis decided
13:58 to exterminate the disabled
14:00 and the children
14:02 also severely disabled.
14:04 Did this fit
14:06 into the framework of
14:08 an eugenic policy?
14:10 Did they call it a positive eugenics?
14:12 And if so,
14:14 can you explain to us
14:16 what positive eugenics is
14:18 for the Nazis?
14:20 Eugenics is a doctrine
14:22 that was popular in many European
14:24 countries at the time.
14:26 It was seen as a way to
14:28 increase the population
14:30 following the First World War
14:32 which caused millions of deaths
14:34 throughout Europe.
14:36 Some people then focused
14:38 on what was called positive eugenics,
14:40 which was about increasing
14:42 the population by public health measures,
14:44 better housing, better family care
14:46 and encouraging fertility.
14:48 Nazi Germany
14:50 was the only country to focus
14:52 on negative eugenics,
14:54 which was the idea of
14:56 suppressing the population,
14:58 children and adults,
15:00 considered as undesirable.
15:02 This was translated by the forced sterilization
15:04 of at least 400,000 people,
15:06 considered as a genetic threat
15:08 to the folk.
15:10 They were therefore
15:12 considered as unfit to live.
15:14 And this did not only concern
15:16 children. Up to a quarter of a million
15:18 people were considered as unworthy
15:20 of life.
15:22 According to the Nazis,
15:24 these people could not be
15:26 remunerated or jobs or be useful to the people.
15:28 They were considered a financial burden
15:30 and were therefore put to death
15:32 by the Nazi regime.
15:34 It is estimated, for example,
15:36 that 75% of people diagnosed
15:38 with schizophrenia were either
15:40 sterilized or killed.
15:42 For the Nazis,
15:44 it is considered that the lives
15:46 of children are not worth living.
15:48 This is the expression they used.
15:50 How, for them, do we identify
15:52 someone whose life is not worth
15:54 being lived, who is even unworthy?
15:56 They were incredibly wide-spread children,
16:00 each of them.
16:02 What they had in common was that
16:04 they were all considered as irrecoverable.
16:06 The Nazi regime called its child murder
16:08 program "euthanasia".
16:10 According to the Nazis,
16:14 they were suffering from these children
16:16 by killing them.
16:18 For them, they were doomed to death anyway.
16:20 But this is a total misnomer.
16:22 The children who were killed
16:24 were not terminally ill, they were not suffering.
16:26 They could have lived their full lives.
16:28 One of the things I hope
16:30 today is that we can make
16:32 the term "euthanasia" disappear
16:34 to talk about these child murders.
16:36 Do you think, Edith Schaeffer,
16:40 Hans Asperger was aware of
16:42 the "Aktion T4" program and
16:44 did he participate in it voluntarily?
16:46 Absolutely.
16:50 I would say that Asperger was an accomplice
16:52 of the Nazi program aimed at killing
16:54 his children.
16:56 His role was to diagnose children
16:58 and he referred them to the Spiegelgrund
17:00 with a diagnosis that would send them to death.
17:02 He associated himself with the
17:04 main figure of the "euthanasia" program.
17:06 He founded organizations with them.
17:08 He published with them.
17:10 These were his most immediate colleagues.
17:12 He absolutely knew what was happening
17:16 at the Spiegelgrund and he referred children to it.
17:18 That said, he was not as bloodthirsty
17:22 as some of his most experienced colleagues.
17:24 In my assessment, he just followed the movement
17:28 and was not entirely
17:30 convinced by the program.
17:32 But he was still enough to believe
17:34 that some children could not be re-educated.
17:36 And in my opinion,
17:38 he was also a conscious participant
17:40 in a system of killing.
17:42 Hans Asperger knew about it.
17:46 He participated in it.
17:48 He is an accomplice.
17:50 And, incredibly, he is not at all worried
17:52 about his participation in the Action T4 program.
17:54 In the end, in the 80s,
17:56 we will give his name to what we will call
17:58 the Asperger syndrome,
18:00 a part of the Autistic Spectrum disorder.
18:02 How come we give him the name
18:04 of Asperger in the 80s?
18:06 Did we forget about it?
18:08 That is a wonderful question
18:12 that I think deserves to be studied.
18:14 After the war,
18:16 Asperger insisted that he was innocent.
18:18 He even said
18:20 that he had been persecuted by the Nazi Party.
18:22 But that is completely false.
18:24 He never joined the Nazi Party,
18:26 which is not unusual for a doctor
18:28 in Vienna.
18:30 Only about three in ten doctors
18:32 joined the Nazi Party.
18:34 But he used this to assert
18:36 that he had always been opposed
18:38 to the children's murder program.
18:40 He even said that the Gestapo
18:42 had come to arrest him,
18:44 which has never been confirmed.
18:46 So, compared to his experienced colleagues,
18:50 he could emerge from the Nazi period
18:52 by claiming that he was innocent
18:54 of these crimes.
18:56 I should say that he was a very marginal figure
18:58 in psychiatry in the world.
19:00 He did not participate
19:02 in international conferences
19:04 or publish anything important about autism.
19:06 He published about 300 articles,
19:08 a handful of which
19:10 were about autism.
19:12 They were published in newsletters
19:14 and were not important publications.
19:16 Asperger would have been
19:20 a real downer in the history
19:22 of autism research
19:24 if it had not been for Dr. Lorna Wing,
19:26 a British psychiatrist
19:28 who had not been for Dr. Lorna Wing
19:30 when she had discovered the Asperger article
19:32 in 1944.
19:34 By courteous professional,
19:36 she decided to give her name
19:38 to the syndrome.
19:40 But the definition of Lorna Wing's
19:42 autism had very little in common
19:44 with Asperger's.
19:46 Lorna Wing got rid
19:48 of Nazi rhetoric
19:50 and talked about a syndrome
19:52 rather than a psychopathy.
19:54 It was thanks to Lorna Wing
19:56 in the 1980s
19:58 that Asperger's syndrome
20:00 appeared and people believed
20:02 his words, that he was innocent
20:04 during the Nazi period.
20:06 Edith Schaeffer, you are the great
20:10 specialist in the history of Hans Asperger.
20:12 You know the case thoroughly.
20:14 Do you think that today
20:16 the Asperger's syndrome should be
20:18 disbaptised, find another name
20:20 simply to
20:22 do his trial in history,
20:24 that is, to take away a prestige
20:26 that he does not deserve?
20:28 I am absolutely convinced
20:30 that we should rename
20:32 the term Asperger's syndrome.
20:34 In medicine, the diagnoses are named
20:36 according to the people
20:38 who are at the origin of the definition
20:40 of a syndrome or of a disease
20:42 as an honor.
20:44 In my opinion, Asperger
20:46 does not deserve either.
20:48 As I said,
20:50 the definition of Asperger's syndrome
20:52 as we know it today
20:54 has advantages related to Lorna Wing
20:56 and her research.
20:58 In fact, we should rather
21:00 talk about the wing syndrome.
21:02 Asperger said that malice and sadism
21:04 were inherent in autism,
21:06 which is not the case.
21:08 I think Asperger
21:10 does not deserve the honor
21:12 of an eponym.
21:14 He was a conscious participant
21:16 in a system of killing.
21:18 In the United States,
21:20 his work has generated
21:22 intense debates.
21:24 Many people have now decided
21:26 to no longer use the term Asperger.
21:28 I hope this discussion
21:30 can continue.
21:32 Thank you so much,
21:34 Edith Schaeffer.
21:36 Thank you.
21:38 It was a joy.
21:40 Thank you so much
21:42 for participating in the heart of the story.
21:44 I remind you that your book
21:46 "Les enfants d'Asperger"
21:48 was published by Flammarion.
21:50 Thank you all for listening to us.
21:52 "Au coeur de l'histoire" is an original podcast
21:54 by Europe 1 Studio.
21:56 See you soon on your favorite listening platform.
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