Literary Expeditions: Neurotribes

This book is a long-winded tale of the history of autism. Silberman’s book weaves through centuries of encountering the diagnosis and how we perceive autism today. Silberman describes autism’s simultaneous discovery by two different psychologists in the 1940s. It was discovered by Leo Kanner in the United States and Hans Asperger in Nazi controlled Germany.

Silberman presents a multitude of characters in autism’s history including Temple Grandin who described autistics as, “different, not less.” Her book, Thinking in Pictures is a fascinating read for anyone that wants a better glimpse of the autistic mind. He postulates that Henry Cavendish (some consider the father of physics) and Paul Dirac (theoretical physicist) may have had Asperger’s. Along with Kanner and Asperger, several notable contributors to autism’s history include Erwin Lazar, Ivar Lovaas, Bernard Rimland, Eric Schopler, and Lorna King.

In 1911, Erwin Lazar approached autism (before it was given a name) in a way that is innovative even by today’s standards. Lazar became adept at intuiting which career path might offer a child the best chance to live a fulfilling life while making a meaningful contribution to society. He viewed each child as embodying a particular archetype, as if the mass of humanity were organized by innate predisposition into clans or tribes, each with its own distinctive attributes. Instead of viewing the children as “patients”, he saw them as future bakers, barbers, farmers, professors, and engineers. As a future Occupational Therapist, I believe this mindset is beneficial for all individuals on the spectrum.

The Schedule at his school, Heilpadagogik Station was as follows:

· An hour of gymnastics and exercises often set to music

· Then academic lessons differing everyday

· Fridays they went for walks in the garden

· Saturday-arts and crafts

· Afternoons were devoted to rest and play

Hans Asperger worked in Vienna, Austria during the time that eugenics became popular in the United States and across Europe, particularly in Germany where Hitler was gaining power. Eugenics was devastating for thousands of children and adults with special needs who were euthanized because they were seen as a “burden on society.” The committee for registration of Severe Hereditary Ailments issued a decree calling for the registration of all children born with congenital abnormalities of any kind. Doctors and midwives were required to report all cases of deafness, blindness, Down Syndrome, hydrocephaly, and other conditions to the committee. More than 200,000 disabled children and adults were murdered during the official phases of the child euthanasia and T4 programs and thousands were killed in acts of wild euthanasia by doctors and nurses on their own initiative.

Hans Asperger

Throughout this tumultuous time, Asperger saw his children as unique and beneficial to society. Several children with childhood schizophrenia were referred to Asperger and he found them to be fascinating. Dubbed his “little professors” the children had amazing memories, but only for certain topics usually centered on math or science. They could tell you on what day of the week you were born or what day it would be 20 years into the future, but could not tell you the time on a clock or recognize different emotions. He focused on their strengths while trying to work through their weaknesses.

Leo Kanner grew up in Ukraine, studied to be a cardiologist and by chance met an American that invited him to work in South Dakota. This was serendipitous because as a Jew he would have been sent to a concentration camp during the Nazi era. He and a colleague Bruno Bettelheim promulgated the theory that autism occurred due to “toxic parenting.” They believed the children’s symptoms were due to “refrigerator parents” that did not give their children the love and support they needed. 80% of the mothers of these children had college degrees which Kanner believed supported his claims. This idea severely impacted the progress that Asperger was making in Europe and lead to institutionalization for a lot of the children Kanner saw.

Two interesting characters that have had a profound impact on my life are Bernard Rimland and Ole Ivar Lovaas. A Navy psychologist with a son with autism, Bernard Rimland teamed up with Ole Ivar Lovaas to begin looking for ways to treat the debilitating features of autism with special diets, megavitamin supplements, alternative medicine—and a new type of therapy.

Lovaas was also connected with Nazi Germany fleeing his native country of Norway during WWII and settling in Los Angeles, California. Previously he had not worked in psychology; however he had the opportunity to work with colleagues of the behaviorist, B.F. Skinner. Skinner was influenced by Ivan Pavlov (founder of classical conditioning) and developed the idea of operant conditioning (behavior is influenced and controlled by its consequences). Previously only applied with animals, Lovaas believed operant conditioning could be used with children with special needs. Along with Rimland they developed the idea of Applied Behavior Analysis (ABA) using reinforcement, punishment, avoidance and other operant conditioning principles with children with autism. Initially looking for a cohort of 10 children for his study at UCLA he only had one participant. From 9-3 M-F, his patient would receive intense behavioral therapy slowly shaping her behavior through discrete trial training.

Ole Ivar Lovaas

Lovaas began exploring aversive stimuli as a way to extinguish undesirable behavior with devastating effects. He started using electrical shock as one of his aversive stimuli stating, “It is important to note, in view of the moral and ethical reasons which might preclude the use of electric shock, that their future was certain institutionalization.” Luckily this form of punishment is not used in ABA therapy. ABA is now used throughout the country for children with autism spectrum disorder with a high dosage of therapy which is directly linked to the first study at UCLA with Lovaas. Haley is an ABA therapist here in Charleston working with children throughout the low-country.

The final character I will describe from the book is Andrew Wakefield a gastroenterologist who “found” a link between vaccinations and autism. He penned an article for The Lancet in 1998 discovering a link between the administration of the measles, mumps, and rubella (MMR) vaccine and the appearance of autism and bowel disease. This study lead to thousands of parents not vaccinating their children (and some presidential candidates, cough Donald cough Trump), believing that vaccinations lead to autism. Other researchers were not able to reproduce Wakefield’s findings and financial conflicts of interest were found on Wakefield’s part. The article was fully retracted from The Lancet and Wakefield was stripped of his medical license, however his paper has not stopped the endless debate over vaccines still present today.

The author dives into many theories that have tried to describe the “pandemic” of autism including vaccinations, environmental characteristics, genetics, and increased diagnostic criteria. One theory he floats is, assortative mating, or the attraction between people with similar genetic traits. This theory may explain why children with autism have parents from logical backgrounds including computer programmers and engineers. In the end, he believes that the bickering and money spent over the causes of autism could be better used for accommodations for parents and children already diagnosed. Now, I certainly agree that we should focus more on accommodations; however I do think that further research the genetic interplay associated with autism.

An interesting side note, autism is derived from the Greek autos or isolation, because these children seem happiest in isolation. Also, the semantics of “having autism” versus being called “autistic” can be very important to some individuals. The argument stems is one of equity for individuals on “the spectrum”. You would not call someone who is athletic as “having athleticism”.

Temple Grandin

In the end, Silberman supports the views of Neurodiversity-the notion that conditions like autism, ADHD, and dyslexia should be regarded as naturally occurring cognitive variations with distinctive strengths that have contributed to the evolution of technology and culture rather than mere checklists of deficits and dysfunctions.

Although the book could have been 200 pages shorter (Silberman unnecessarily provides long-winded tangents), this book is valuable for the autistic community and for anyone interested in how we got where we are today.