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Thursday, April 19, 2018

More on Asperger and Nazism

In The Politics of Autism, I write about the dangers of eugenics and euthanasia.

In A Different Key, John Donvan and Caren Zucker found that Dr. Hans Asperger worked with Nazis in Austria.  We are now learning more details. 

Herwig Czech has an article at Molecular Biology titled "Hans Asperger, National Socialism, and “Race Hygiene” in Nazi-era Vienna." The abstract:
Background

Hans Asperger (1906–1980) first designated a group of children with distinct psychological characteristics as ‘autistic psychopaths’ in 1938, several years before Leo Kanner’s famous 1943 paper on autism. In 1944, Asperger published a comprehensive study on the topic (submitted to Vienna University in 1942 as his postdoctoral thesis), which would only find international acknowledgement in the 1980s. From then on, the eponym ‘Asperger’s syndrome’ increasingly gained currency in recognition of his outstanding contribution to the conceptualization of the condition. At the time, the fact that Asperger had spent pivotal years of his career in Nazi Vienna caused some controversy regarding his potential ties to National Socialism and its race hygiene policies. Documentary evidence was scarce, however, and over time a narrative of Asperger as an active opponent of National Socialism took hold. The main goal of this paper is to re-evaluate this narrative, which is based to a large extent on statements made by Asperger himself and on a small segment of his published work.

Methods

Drawing on a vast array of contemporary publications and previously unexplored archival documents (including Asperger’s personnel files and the clinical assessments he wrote on his patients), this paper offers a critical examination of Asperger’s life, politics, and career before and during the Nazi period in Austria.

Results

Asperger managed to accommodate himself to the Nazi regime and was rewarded for his affirmations of loyalty with career opportunities. He joined several organizations affiliated with the NSDAP (although not the Nazi party itself), publicly legitimized race hygiene policies including forced sterilizations and, on several occasions, actively cooperated with the child ‘euthanasia’ program. The language he employed to diagnose his patients was often remarkably harsh (even in comparison with assessments written by the staff at Vienna’s notorious Spiegelgrund ‘euthanasia’ institution), belying the notion that he tried to protect the children under his care by embellishing their diagnoses.

Conclusion

The narrative of 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. What emerges is a much more problematic role played by this pioneer of autism research. Future use of the eponym should reflect the troubling context of its origins in Nazi-era Vienna.

Wednesday, April 18, 2018

Research on Causation

In The Politics of Autism, I discuss various ideas about what causes the conditionHere is just a partial list of correlates, risk factors, and possible causes that have been the subject of serious studies:
This Keynote Lecture, delivered at the 2016 meeting of the International Society for Autism Research,discusses evidence from human epidemiologic studies of prenatal factors contributing to autism, such as pesticides,maternal nutrition and her health. There is no single cause for autism. Examples highlight the features of a high-quality epidemiology study, and what comprises a compelling case for causation. Emergent research directions holdpromise for identifying potential interventions to reduce disabilities, enhance giftedness, and improve lives of those with ASD
From the article:
The first decade of concerted efforts to identify environmental/modifiable causes of autism has produced a plethora of clues about risk and protective factors, with increasingly compelling evidence for a few: short interpregnancy intervals, maternal diabetes. The field has begun to mature, moving into its mid‐ to late childhood stage, where research is building and consolidating gains through replication of results and refinement of methods, even while still uncovering new connections. Also arising from this literature is the recognition of complexity in ASD etiology. Thus, we are poised to approach adolescence, where new developments in molecular biology, electronic connectedness and big data create possibilities and opportunities to address some of the major perplexing challenges.

Tuesday, April 17, 2018

Autism in France

 In The Politics of Autism, I describe the need for comparative perspectives on the issue

Richard Bates at The Conversation:
France has a problem with autism. The country’s highest administrative court estimates that there are 700,000 autistic people in France. However, only 75,000 are diagnosed. Autistic children have historically been diagnosed later in France than in neighbouring countries. They have often been excluded from mainstream education and lacked access to support services and extracurricular activities.

Many French autists are confined to day hospitals and live-in institutions, isolated from the community and frequently unable to communicate through speech – whereas in the US, for example, public schools are required by law to fully include autistic children in mainstream classroom education. For years, families in northeast France have taken autistic children to Belgium, to access its superior services.
The French government recognises these shortcomings. It was forced to do so in 2004 by a combination of domestic campaign groups and international pressure: the Council of Europe judged France’s autism provisions to be in breach of the European Social Charter. This judgement has been repeated in several subsequent cases. In 2016, the UN Committee on the Rights of the Child also worried that French autists “continue to be subjected to widespread violations of their rights” to education and support.

The response has been a series of “Plans Autisme”, so-called “Marshall Plans” directing investment towards improving outcomes. The latest such plan – the fourth – was launchedin early April by the French president, Emmanuel Macron, and will run until 2022. It seeks to recruit thousands of teaching assistants to enable autistic children to attend mainstream schools, as well as facilitating more diagnoses. Yet its very existence demonstrates that the results of the previous three plans were disappointing.

Monday, April 16, 2018

Reporting Offensive Tweets

 In The Politics of Autism, I examine the role of social media in the development of the issue.

Melissa Blake at CNN:
The next time you report a Twitter troll for polluting your timeline, you might notice an additional word on the reporting form.
Disability.
It's just one word. One we've seen thousands of times before. In fact, if you weren't looking closely at the form in the frenetic moments of reporting a tweet, you might not even notice it.
But make no mistake: This change is no small feat. It's a long overdue win in what seemed like a never-ending battle, one that people with disabilities like myself have been fighting online for years. Thankfully, Twitter joined that fight earlier this month when it revised its reporting form to include hate directed at people with disabilities.
"It's against our rules to directly attack or threaten someone based on their protected category, including disability," Twitter said in a tweet posted April 2. "You asked us to clarify this in our reporting flow, and we've updated it to be more specific."
The change is thanks to Natalie Weaver, who called on Twitter to revise its reporting form after her daughter's photo was used in an offensive tweet promoting eugenics. Her daughter, Sophia, has Rett syndrome, a genetic brain disorder that affects such things as language, walking and coordination. At first, Weaver told the website The Mighty, Twitter refused to take down the tweet, but eventually changed course, removing the offending account entirely.

Sunday, April 15, 2018

Differences Among States in Autism Prevalence

In The Politics of Autism, I discuss the uncertainty surrounding estimates of autism prevalence

At The Journal of Autism and Developmental Disorders, R. Christopher Sheldrick and Alice S. Carter have an article titled" State-Level Trends in the Prevalence of Autism Spectrum Disorder (ASD) from 2000 to 2012: A Reanalysis of Findings from the Autism and Developmental Disabilities Network." The abstract:
Since 2000, the Autism and Developmental Disabilities Network (ADDM) has published detailed prevalence estimates for autism spectrum disorder (ASD) among 8 year-olds, which are widely interpreted as the U.S. national prevalence of ASD. Although differences in state-level ASD prevalence has been reported, state-level heterogeneity has not been explored systematically. We analyzed state-level estimates and trends in ASD prevalence from 2000 to 2012 using secondary data from bi-annual ADDM reports. Heterogeneity among state-level ASD prevalence estimates were apparent in 2000 and grew between 2000 and 2012. Findings highlight the need for greater understanding of how children with ASD are identified by the medical and educational systems, which has significant implications for the state-level resources required to effectively manage ASD.
New Jersey has the highest prevalence, Alabama the lowest.  Why?

From the article:
Consideration of such differences is important for at least two reasons. First, a large proportion of service delivery for ASD is managed at the state level. Strong differences in ASD prevalence at the state level therefore have implications for the resources required to provide adequate services (Wise et al. 2010). Second, improved understanding of the causes of observed changes in ASD prevalence may depend on a
more detailed understanding of heterogeneity. For example, the ADDM and others have speculated that trends in ASD prevalence over time may be attributable either to changes
in the true prevalence of ASD, for example resulting from trends in exposure to risk factors such as environmental toxins, or changes in the ascertainment of ASD, for example attributable to increased awareness of or sensitivity to ASD symptoms (Blumberg et al. 2013; Centers for Disease Control and Prevention 2014; Hansen et al. 2015; Idring et al. 2015). 
  • Blumberg, S. J., Bramlett, M. D., Kogan, M. D., Schieve, L. A., Jones, J. R., & Lu, M. C. (2013). Changes in prevalence of parent-reported autism spectrum disorder in school-aged U. S. children: 2007 to 2011–2012. National Health Statistics Reports, 65, 1–11.Google Scholar
  • Centers for Disease Control and Prevention. (2014). Prevalence of autism spectrum disorder among children aged 8 years—Autism and Developmental Disabilities Monitoring Network, 11 sites, United States, 2010. MMWR, 63(SS-2), 1–21.Google Scholar
  • Hansen, S. N., Schendel, D. E., Parner, E. T. (2015). Explaining the increase in the prevalence of autism spectrum disorders. JAMA Pediatrics, 169(1), 56. https://doi.org/10.1001/jamapediatrics.2014.1893.CrossRefPubMedGoogle Scholar
  • Idring, S., Lundberg, M., Sturm, H., Dalman, C., Gumpert, C., Rai, D., … Magnusson, C. (2015). Changes in prevalence of autism spectrum disorders in 2001–2011: Findings from the Stockholm youth cohort. Journal of Autism and Developmental Disorders, 45(6), 1766–1773. https://doi.org/10.1007/s10803-014-2336-y.CrossRefPubMedGoogle Scholar
  • Wise, M. D., Little, A. A., Holliman, J. B., Wise, P. H., & Wang, C. J. (2010). Can state early intervention programs meet the increased demand of children suspected of having autism spectrum disorders? Journal of Developmental and Behavioral Pediatrics, 31(6), 469–476. https://doi.org/10.1097/DBP.0b013e3181e56db2.PubMedGoogle Scholar

Saturday, April 14, 2018

Blackstone Acquires CARD


An April 13 release from Blackstone:
Blackstone (NYSE: BX) announced today that private equity funds managed by Blackstone have agreed to acquire the Center for Autism and Related Disorders, LLC (“CARD”), a leading provider of autism behavioral health services for children and adults affected by autism spectrum disorder. CARD Founder and CEO Dr. Doreen Granpeesheh and CARD management will invest alongside Blackstone in the transaction.
CARD offers center, school, and home-based behavioral therapy nationwide to children and adults diagnosed with autism. The company delivers rigorous clinical quality and positive outcomes through a highly credentialed and well-trained workforce of behavior analysts and behavior technicians, high engagement with patients and their families, proprietary software for treatment planning and ongoing monitoring, and an evidence-based, individualized approach to treating each child or adult. Dr. Granpeesheh will continue to lead CARD along with members of her experienced management team.
Bruce McEvoy, Senior Managing Director at Blackstone, said, “Dr. Granpeesheh has built an industry-leading provider of behavioral therapies for autism. We are thrilled to have the opportunity to partner with Dr. Granpeesheh and the rest of her visionary management team and look forward to supporting the company as it continues to expand access to treatment and services for those affected by autism.”
Dr. Granpeesheh, Founder and CEO of CARD, added, “We are proud of the high-quality services we provide and our commitment to helping individuals affected by autism achieve their full potential. Partnering with Blackstone will enable us to dramatically enhance our ability to serve the autism community through increased investments in people, clinics, technology, and research.”
The transaction is expected to close later this year. Blackstone was advised by Kirkland & Ellis LLP and Cain Brothers, a division of KeyBanc Capital Markets. CARD was advised by Nevers, Palazzo, Packard, Wildermuth & Wynner, PC, and Berkery Noyes.

Friday, April 13, 2018

Test Scores Flat

In The Politics of Autism, I write about special educationtesting, and inclusion.

Christina Samuels at Education Week:
Students with disabilities posted stagnant scores on the National Assessment of Educational Progress in 2017 and failed to close the gap with students not identified as having disabilities, who also reflected generally flat performance on the latest results for what's been called the "Nation's Report Card."
Fourth-grade students with disabilities earned an average of 187 on the NAEP's reading test and 214 on the NAEP's math test, both of which are scored on a 500-point scale.

For 4th-grade students without disabilities, however, the average score was 227 on the reading test and 243 on the math test.

Eighth grade students with disabilities earned 232 on the reading test and 247 on the math test. Reading was a small bright spot—that score was a 2-point gain for students with disabilities from the last time the test was administered, in 2015.

But the reading test scores of 8th-grade students without disabilities also rose, by 1 point. Their average score was 271 on the reading portion of the test and 288 on the math section of the test.
Nevertheless, graduation rates are going up.