Was Asperger really 'non-complicit' in Nazi-era Vienna?

The paper published by Dean Falk [1] was bound to happen. Her analysis of "newly translated and chronologically-ordered information" regarding Hans Asperger - the man who gave his name to Asperger syndrome - represents a push-back against some pretty overwhelming information [2] suggesting that Asperger was not necessarily the 'saviour' that many had once believed (see here).

For those who might not know the background to this story, the article written by John Donvan & Caren Zucker [3] back in 2016 provides an excellent overview. It charts how the man who defined the (now defunct) label of Asperger syndrome worked in some pretty dark times. The depiction of Asperger during the years of Nazi occupation for many years was one of "a cautious yet brave and canny saboteur of the Nazi project to exterminate intellectually disabled children." Donvan & Zucker note that "an overwhelmingly positive narrative of Asperger as a man of moral rectitude came into focus in the new millennium, elevating him almost to the status of hero."

But as far back as the 1990s, not everyone was convinced by this narrative. Indeed, as Asperger syndrome made it's [fairly brief] entry into one version of the DSM, one of the diagnostic 'bibles' used to diagnose autism and a whole host of other behavioural and/or psychiatric conditions, questions were already being asked and not just by one person. It took however another 20 years or so before a historian, Herwig Czech, did some real 'digging' and presented the results of his research. Czech's conclusions were summarised by Donvan & Zucker: "Asperger took care during the war to safeguard his career and to burnish “his Nazi credibility.” Asperger, it would appear, did what was necessary."

The Falk paper talks about 'newly translated' information but really doesn't provide much more data than that which was already unearthed by Czech and other researchers/writers. We're told that various on-line translation services were used to translate several documents; specifically looking at "cultural contexts, Asperger's sustained campaign on behalf of disabled children, and his attitude toward patients."

I've read the full-text of the Falk paper and have to say that I really can't see how it substantially changes some key points. One primary issue is that Asperger seemed to have referred a child - Herta Schreiber - "from the University of Vienna Children’s Clinic to Am Spiegelgrund, where they [children] were murdered between 1940 and 1945." Spiegelgrund was a facility "which superficially resembled a hospital, but which functioned in reality as a killing center for severely disabled children." One might quibble about some of the translations and what was meant by them in terms of intent, but for Herta, such a referral apparently signed by Asperger, was her death sentence: "On 2 September, a day after her third birthday, Herta died of pneumonia, the most common cause of death at Spiegelgrund, which was routinely induced by the administration of barbiturates over a longer period of time." Did Asperger know about what really went on at Spiegelgrund? Certainly other doctors who Asperger worked with seemed to know what was going on there including some of his colleagues and direct superiors. Surely also, given the very consistent number of deaths from 'pneumonia' - many only a matter of weeks after children were referred to Spiegelgrund - most doctors would be questioning what was going on there if they didn't already know. And then we have the post-war picture, and how little was seemingly said about children like Herta by Asperger after the true nature of facilities like Spiegelgrund came to light...

We can never truly know what went on during those dark years. We rely on incomplete records that have been meticulously pieced together to provide a picture; albeit an incomplete picture. Asperger died in 1980 so he is not around to answer the points raised and defend himself. But never forget that Herta was a child. She was 3 years old when she was murdered. On the basis of that important fact alone, and the apparent referral made by Asperger to the place of her death, I find the Falk paper mentioning the word 'non-complicit' to be distasteful and disrespectful to her memory. I similarly find the campaign to restore the 'hero status' of Asperger distasteful and disrespectful to her memory and many others who were considered less than human by such a disgusting regime. To quote from the Donvan & Zucker piece once more: "Czech spoke for only 20 minutes or so that day at the Vienna City Hall. Then he stopped to take audience questions. In that pause, Dr. Arnold Pollak, the director of the clinic where Asperger had worked for much of his career, leapt to his feet, clearly agitated. Turning to the room, he asked that everyone present stand and observe a moment of silence in tribute to the many children whose long-forgotten murders Herwig Czech had returned to memory. The entire audience rose and joined in wordless tribute."

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[1] Falk D. Non-complicit: Revisiting Hans Asperger's Career in Nazi-era Vienna. J Autism Dev Disord. 2019 Mar 18.

[2] Czech H. Hans Asperger, National Socialism, and “race hygiene” in Nazi-era Vienna. Molecular Autism. 2018; 9: 29.

[3] Donvan J. Zucker C. The Doctor and the Nazis. Tablet. 2016. Jan 19.

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Hans Asperger "was actively involved in the Nazi regime's euthanasia programme in Austria"

Credit: The BBC News website 19 April 2018

Many people will already have seen the headlines (see here for example) covering the paper by Herwig Czech [1] that concluded that: "The narrative of [Hans] Asperger as a principled opponent of National Socialism and a courageous defender of his patients against Nazi ‘euthanasia’ and other race hygiene measures does not hold up in the face of the historical evidence."

It makes for particularly difficult reading insofar as dispelling other highly-cited accounts of Asperger as being some sort of 'hero' - "the narrative of Asperger as an Oskar Schindler-like protector of children with autism" - who claimed "to have shielded his patients from the Nazi regime." Instead, as also acknowledged in an accompanying editorial on the Czech findings [2], the evidence uncovered seems to point to something rather more approaching: "that Asperger was not just doing his best to survive in intolerable conditions but was also complicit with his Nazi superiors in targeting society’s most vulnerable people." The main assertions seem to be around Asperger "referring children both directly and indirectly to Am Spiegelgrund", a notorious clinic that summed up the utter disdain that the Nazi regime had for the beautiful heterogeneity of life.

I don't really want to say too much more on this topic because I'm sure that discussions will go on with regards to the Czech findings and their implications. I do want to raise two points that may be pertinent however.

First, the question of 'does it matter?' that Asperger had such a past is bound to be raised. Yes, it does matter. As a previous opinion piece published just before the Czech article (see here) mentions: "To medical ethics, it does. Naming a disorder after someone is meant to credit and commend, and Asperger merited neither." That author, who also has a book coming out on this topic, went as far as suggesting that: "We should stop saying “Asperger.” It’s one way to honor the children killed in his name as well as those still labeled with it."

Second, and related to the first point, is the 'flack' that has been taken by the most recent Diagnostic and Statistical Manual (DSM) (version 5) when it dropped the term 'Asperger syndrome'. Instead, the authors of this 'diagnostic bible' chose to go down the more generic 'autism' route; something that also looks likely in the context of the ICD-11 proposals too (see here). In view of the Czech findings and bearing in mind that issue of 'medical ethics' it looks like this was a correct decision. I appreciate that this may have knock-on effects for those diagnosed and identifying as having Asperger syndrome - ""No-one with a diagnosis of Asperger syndrome should feel in any way tainted by this very troubling history," Carol Povey, director at the Centre of Autism for the UK's National Autistic Society, said in a statement to the BBC" - but with these new revelations must come some sort of change in thinking.

The Czech findings matter because lives matter. They matter because they paint a picture of a man who lived and worked in very difficult times but a man "that the Nazi authorities saw... in an increasingly positive light, including as someone willing to go along with their ideas of race hygiene."

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[1] Czech H. Hans Asperger, National Socialism, and “race hygiene” in Nazi-era Vienna. Molecular Autism. 2018; 9: 29.

[2] Baron-Cohen S. et al. Did Hans Asperger actively assist the Nazi euthanasia program? Molecular Autism. 2018; 9: 28.

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Euthanasia and assisted suicide mentioning autism: inadequate safeguards and 'vulnerability'

By discussing the paper by Irene Tuffrey-Wijne and colleagues [1] (open-access), I'm once again returning to the complex topic of euthanasia and assisted suicide (EAS) where autism is mentioned (see here and see here).

As per my previous blogging entries on some of the peer-reviewed science on this subject, I'll reiterate how sensitive and contentious this topic is. On the one hand is the primary human freedom to choose. On the other, is another human right: the right to live and the sanctity of life. The two viewpoints collide on this topic (see here).

Tuffrey-Wijne et al follow on from the work of Kim and colleagues [2] by focusing on the Netherlands, where EAS is legal. Legal that is, "provided that statutory due care criteria are met, including: (a) voluntary and well-considered request; (b) unbearable suffering without prospect of improvement; (c) informing the patient; (d) lack of a reasonable alternative; (e) independent second physician’s opinion." The authors searched the records of regional review committees (RTE) who provide oversight on "whether the requirements of 'due care' had been observed" in cases of EAS, looking for any mention of intellectual (learning) disability and/or autism spectrum disorder (ASD). They found a small number of people (N=9) who met these diagnostic criteria and set about analysing whether "the EAS due care criteria are applied." Their conclusions: "The Dutch EAS due care criteria are not easily applied to people with intellectual disabilities and/or autism spectrum disorder, and do not appear to act as adequate safeguards."

Authors provide details on the nine cases, including "selected quotes with regards to the patients’ stated characteristics, diagnosis, and due care criteria." I was particularly struck by some of the reports included under the heading 'unbearable suffering without prospect of improvement' which provides not only insight into how lives can be so totally affected by a diagnosis, but also a reflection of how we (society) continue to fail so many people on so many different levels. I know to use the word 'suffering' in the context of autism for example, has the ability to furrow brows in some quarters. But for these nine people there did seem to be genuine misery and suffering. To quote: "For two patients, for whom various psychiatric and somatic conditions were described, the stated suffering appeared to stem from characteristics of autism spectrum disorder itself, rather than from acquired medical conditions." Factors such as a 'loss of control' and the manifestation of issues stemming from autism "that may not be directly understandable to others" are also detailed.

The authors conclude: "particular caution [is required] in cases of EAS requests from people with intellectual disabilities and/or autism spectrum disorder, with the onus on both physicians and the RTE to demonstrate much more clearly how all due care criteria were met." In other words, countries that have legalised EAS need to do quite a bit more to ensure that vulnerable groups are not unfairly disadvantaged and are supported as much as possible when it comes to making such an extreme decision. I'll also say again (see here), vulnerability is too often seen as a 'dirty word' when it comes to autism, despite there being ample evidence that vulnerability manifests widely across many areas of daily living for those diagnosed. I can think of no more 'final' outcome than EAS where the (supposed implied) recognition of vulnerability needs to be paramount to any decision being made.

As per the opening paragraph to this blog entry, there is a balance to be struck between the sanctity of life and personal choice in this area. But that 'choice' needs to be an informed choice; with the requirement to ensure that any "such [EAS] legislation includes sufficient safeguards to protect vulnerable patient groups."

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[1] Tuffrey-Wijne I. et al. Euthanasia and assisted suicide for people with an intellectual disability and/or autism spectrum disorder: an examination of nine relevant euthanasia cases in the Netherlands (2012–2016). BMC Medical Ethics. 2018; 19: 17.

[2] Kim SY. et al. Euthanasia and Assisted Suicide of Patients With Psychiatric Disorders in the Netherlands 2011 to 2014. JAMA Psychiatry. 2016 Apr;73(4):362-8.

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Patients with psychiatric disorders who request euthanasia (continued)

Once again the uncomfortable topic of euthanasia and assisted suicide (EAS) is covered on this blog (see here for the last entry) as I discuss the findings reported by Scott Kim and colleagues [1] who reported on the "characteristics of patients receiving EAS for psychiatric conditions and how the practice is regulated in the Netherlands."

Accompanied by some media interest (see here), the Kim paper provides an important overview of the: "Clinical and social characteristics of patients, physician review process of the patients’ requests, and the euthanasia review committees’ assessments of the physicians’ actions" in relation to EAS. As per other countries, certain legal protections are currently in place in the Netherlands when it comes to EAS. Although it is widely assumed that EAS is generally 'linked' to the presentation of physical conditions, either limiting life or causing extreme suffering, there is an increasing number of people turning to such options on the basis of the effects of psychiatric and/or behavioural conditions/labels/disorders. Before you form any snap opinions about the 'rights and wrongs' of this, it is worth bearing in mind the far-reaching effects that psychiatric conditions can have on a person and how this manifests in relation to issues such as suicide rates for example. I say that last sentence whilst making no personal value judgements on the provision of EAS.

Kim et al analysed data on 66 people who received EAS. 66 people who are no longer with us. Most were women (70%) and most had some history of 'psychiatric admission' (80%). About half of the cohort had a history of suicide attempt(s). The types of diagnoses/labels applied to the cohort ranged from depression (35%) to psychotic disorder(s) (8%). As per the last occasion when EAS was discussed on this blog, mention of the autism spectrum is made in 2 of the 66 cases reported on. Also: "In 37 patients (56%), the reports mentioned the patients’ social isolation or loneliness, some with striking descriptions such as the following: “The patient indicated that she had had a life without love and therefore had no right to exist” (case 2012-46), and “The patient was an utterly lonely man whose life had been a failure” (case 2013-21)." I might add that those are words actually included in the case reports analysed.

"The patients’ psychiatric conditions were chronic. In 10 patients (15%), the duration of their illness was described qualitatively (“years,” “decades,” or “longstanding”)." Alongside the psychiatric or behavioural presentation of cases, Kim and colleagues also report on the presence of various comorbid medical conditions. Many (58%) had a least one medical condition. Some (18%) had 3 or more including: "cancer, suspected malignancy, chronic obstructive pulmonary disease, cardiac disease, diabetes mellitus, stroke, prior brain tumor surgery, arthritis, orthopedic problems, chronic fatigue, fibromyalgia, migraines, neurological disorders (stroke, Meniere disease, pain syndrome, Parkinson disease, diaphragm paralysis, or gait disturbance), pancreatitis, medical complications of severe weight loss, vision loss, hearing loss, incontinence, and decubitus or other ulcers."

Various other points are covered in the Kim paper which I would encourage interested readers to peruse. The bottom line is that procedures pertinent to EAS in relation to psychiatric/behavioural manifestations are being utilised and a degree of diversity is present among those seeking such an extreme alternative. That social isolation and loneliness are part of the reasons why EAS is being sought is also an important point to reiterate.

The accompanying editorial on the Kim paper (see here) also makes for an important read. Questions are raised: "Will psychiatrists conclude from the legalization of assisted death that it is acceptable to give up on treating some patients? If so, how far will the influence of that belief spread?" that have some really important repercussions particularly in view of the discussions on a good death (see here).

I do finally want to pass comment specifically on the inclusion of autism or autism spectrum disorder (ASD) in amongst the Kim case files. My view is the same as it was the last time I discussed this topic:

'I know the idea of modifying the presentation of autism is not palatable for everyone, and that society also needs to play a role in how people with autism / autistic people are welcomed and supported. When however a label such as autism potentially leads, or is contributory, to a path whereby a person considers ending their own life by suicide or euthanasia, I find it difficult to say that we should just stand back and watch from the sidelines.'

More research on this uncomfortable topic is of course implied.

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[1] Kim SYH. et al. Euthanasia and Assisted Suicide of Patients With Psychiatric Disorders in the Netherlands 2011 to 2014. JAMA Psychiatry. 2016. Feb 10.

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Kim, S., De Vries, R., & Peteet, J. (2016). Euthanasia and Assisted Suicide of Patients With Psychiatric Disorders in the Netherlands 2011 to 2014 JAMA Psychiatry DOI: 10.1001/jamapsychiatry.2015.2887

Patients with psychiatric disorders who request euthanasia

I'll freely admit that the paper by Lieve Thienpont and colleagues [1] (open-access available here) made me feel rather uncomfortable. With the objective of identifying "patterns in euthanasia requests and practices relating to psychiatric patients", authors detailed the experiences of 100 Belgian patients requesting euthanasia - 'the act of deliberately ending a person's life to relieve suffering' - through a retrospective case note review. Euthanasia is legal in Belgium under certain circumstances. Within their cohort, a fifth of cases were diagnosed (or eventually diagnosed) as being on the autism spectrum; the vast majority with Asperger syndrome (n=19).

Their results suggested that: "Depression and personality disorders are the most common diagnoses in psychiatric patients requesting euthanasia." Further, that Asperger syndrome represented "a neglected disease burden" when it came to the idea that "unbearable psychological suffering" might lie behind such requests.

I don't want to get into any debates about the rights or wrongs of euthanaisa in this post. Viewpoints are varied on this point and I'm not seeking conflict. The suggestion that 'psychological suffering' might rank up alongside 'physical suffering' when it comes to entertaining the idea of euthanasia is an important issue raised in this paper. One only needs to look at the very stark connection between psychatric disorder and suicide [2] to see that psychological suffering often takes a severe toll on a person. Indeed, when following up their cohort, Thienpont et al note that "43 of the 100 patients had died." The majority had eventually opted for and been granted euthanasia but: "Six patients had committed suicide."

The inclusion of a diagnosis of Asperger syndrome in the cohort followed by Thienpont et al represents something of an additional dimension to this issue and raises a number of ethical issues requiring much further discussion. Whilst it is already known that autism/Asperger syndrome seems to elevate the risk for issues such as depression, particularly bipolar disorder, appearing comorbid (see here) and that suicide ideation and contemplation might also not be uncommon in cases (see here), the question of what can be done to mitigate such issues must come to the forefront.

Appreciating that views are varied on autism and what it means to people - those diagnosed and those family, friends and professionals around them - and that individuals have a right to determine their own path, I would perhaps suggest that the Thienpont paper adds to a growing body of literature suggesting that the alleviation of symptoms must rank as a research priority for those who wish it and where effective (research-based) interventions can be isolated. Going back to the paper by Copeland and colleagues [3] (discussed in a previous post) suggesting that the reduction of 'childhood psychiatric distress' might have important knock-on effects for adult outcomes, one gets a flavour for where efforts might be initially directed. That also the idea that additional psychopathology accompanying autism might also be positively affected in those cases of 'optimal outcome' as per the findings from Orinstein et al [4] adds to the potential research agenda (see here for some recent discussions on this topic).

I know the idea of modifying the presentation of autism is not palatable for everyone, and that society also needs to play a role in how people with autism / autistic people are welcomed and supported. When however a label such as autism potentially leads, or is contributory, to a path whereby a person considers ending their own life by suicide or euthanasia, I find it difficult to say that we should just stand back and watch from the sidelines.

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[1] Thienpont L. et al. Euthanasia requests, procedures and outcomes for 100 Belgian patients suffering from psychiatric disorders: a retrospective, descriptive study. BMJ Open. 2015 Jul 27;5(7):e007454.

[2] Wasserman D. et al. The European Psychiatric Association (EPA) guidance on suicide treatment and prevention. Neuropsychopharmacol Hung. 2012 Jun;14(2):113-36.

[3] Copeland WE. et al. Adult Functional Outcomes of Common Childhood Psychiatric Problems: A Prospective, Longitudinal Study. JAMA Psychiatry. 2015. July 15.

[4] Orinstein A. et al. Psychiatric Symptoms in Youth with a History of Autism and Optimal Outcome. J Autism Dev Disord. 2015 Jul 9.

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Thienpont L, Verhofstadt M, Van Loon T, Distelmans W, Audenaert K, & De Deyn PP (2015). Euthanasia requests, procedures and outcomes for 100 Belgian patients suffering from psychiatric disorders: a retrospective, descriptive study. BMJ open, 5 (7) PMID: 26216150