Isabelle Rapin (1927-2017): the Grande Dame of Autism Research

It was with great sorrow that I learned of the passing away of Isabelle Rapin. She died this past month of pneumonia at the age of 89. For the past 2 or more decades, Isabelle was my good friend, mentor and confidant.  At this side of the Atlantic she was, with justification, the Grande Dame of autism research (Note: Uta Frith, the other great lady of autism research, lives in England).

Isabelle was a Swiss born Child Neurologist whose training and experience made her focus on the biological underpinnings of neurodevelopmental disorders, especially autism.  I always believed that her interest in autism was born out of curiosity with the medical history of her family. She had personally diagnosed her brother, a well-known eccentric mathematician, as having had Asperger disease. Upon his death, she went as far as collecting his copious medical records and brain at autopsy. On many occasions, she asked me to review the microscopic slides of the autopsy. The slides had been reviewed by several other clinicians, but this was a character trait of Isabelle, always looking and drawing a consensus from the opinions of others.

I had the opportunity to spend a week with Isabelle and her husband as we traveled together for an international meeting in Spain.  The experience was marred as our group left Isabelle and her husband at a distance while everybody was shopping.  Gypsies targeted Isabelle and yanked her bag out of her arm. Although I gave late pursuit to the initial gypsy, the bag was handed from one accomplice to another until they were far gone in a couple of minutes.  Like many tourists, she carried all of their money in the bag.  It made for a depressing few days, but gave me the opportunity to get to know her and her husband better. Isabelle went back to work, preparing for her lecture and discussing with me future projects. Not encumbered by the “trivialities” of her circumstances she focused immediately on the work at hand while her optimism for “whatever lies ahead” was eternal.

I saw the great qualities of this lady in an academic squabble. Isabelle had been the director of a federal funded study that, in part collected MRIs of autistic individuals. The project was not renewed and, lacking manpower to proceed further, some of the data that she collected went into hibernation. Another investigator gathered the MRIs and published results on them without giving Isabelle and other members of her team co-authorship or an acknowledgment.  Much to her credit, Isabelle did not trash the career of the young investigator and only spoke kindly of her. “I am only happy that somebody found the data that I collected to be of use”, she once told me.

We made the point of getting together whenever we attended meetings. A high point in my life happened while visiting New York when she invited me to meet her good friend Oliver Sacks. Oliver was a famous British neurologist and bestselling author -and somebody apparently on the autism spectrum himself. He had a lady personal assistant who served as an intermediary with the outside world. Isabelle was one of the few people who could crash on him, practically unannounced. Looking back at the circumstances I believe that Oliver and others considered Isabelle a friend as she was non-threatening and never had any ulterior personal motives. She was a true friend to all.

Meeting with Isabelle was always my great pleasure and we had many opportunities to do so. She kept attending meetings and being active in research until the very end. Indeed, she retired from her position as a member of the faculty at Albert Einstein in 2012, at the age of 84, and still kept coming to her office.

In 2008, Isabelle won the Lifetime Achievement Award from the International Society for Autism Research (INSAR). During her presentation, I was concerned that she had mentioned Bettelheim as an authority in psychoanalysis without being aware of the aforementioned investigator’s fraudulent credentials.  This lead to an email exchange trying to analyze the complexities of the fraud perpetuated by Bettelheim. As I said before, Isabelle was never satisfied with simple explanations and always looked for more.  For Isabelle, criticism was not a negative, but a chance to learn, for which she was always happy.

Isabelle left many students behind. Probably the most famous and accomplished is my hermano, Roberto Tuchman (note: “hermano” or brother is my term of endearment for my good friend Roberto). Roberto is presently the Director of the Dan Marino Center at the Miami Children’s Hospital. During his training at Albert Einstein, Roberto and Isabelle published 3 classic articles regarding the presence of seizures in autism. It is now clear that about two third of autistic individuals have abnormalities in their electroencephalogram (EEG) and approximately one third will develop seizures. In effect, epilepsy is regarded as a comorbidity of autism but, more so, a defect in the excitatory-inhibitory bias of the cerebral cortex appears to be a core feature of the condition.  Although that fact is now readily accepted, twenty years ago it was disputed. This grudge, pitting opposing factions was carried forth even until recently as other distinguished autism clinicians, like Ed Ritvo, voiced dissenting opinions.

Roberto and Isabelle jointly edited a book on autism.  The title of the book was also her position statement, not surprisingly, “Autism: A Neurological Disorder of Early Brain Development”. Contrary to many other books on autism, Isabelle insisted that none of the contributors would lose time at the beginning of their manuscript describing the condition. She was always of the opinion that autism was defined by behaviors, and that these were always soft findings and susceptible to argumentation.  Isabelle was initially given the opportunity to edit the book and asked Roberto to join her. Most people agreed to contribute because of the personal invitation by Isabelle. However, Roberto did the heavy lifting in regards to editing. For this reason, Isabelle insisted that Roberto should be mentioned first as the book editor. Roberto was always appreciative of this fact.

I am extremely sorry that in the many obituaries that I read, those interviewed gave only the usual platitudes. With the passage of time a person’s achievements are often taken for granted and the personal stories denoting their character never seem to surface. I am deeply sorry about the passing away of this great lady. Isabelle, you always were an example to others, certainly my example, my shinning light. I will always miss you. The world is now dimmer in your absence.

 

 

One response to “Isabelle Rapin (1927-2017): the Grande Dame of Autism Research

  1. Hope the lights of her work will stay with you.

    Many years ago when my son was diagnosed I went from one source to another looking for answers and I found the concepts of “semantico-pragmatic” agnosia and others of language development very interesting. Was she not the author together with somebody called Allen?

    Like

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