Nearly seventy-five years ago, Donald Triplett of Forest, Mississippi, became the first child diagnosed with autism. Beginning with his family’s odyssey, In a Different Key tells the extraordinary story of this often misunderstood condition, and of the civil rights battles waged by the families of those who have it. Unfolding over decades, it is a beautifully rendered history of ordinary people determined to secure a place in the world for those with autism—by liberating children from dank institutions, campaigning for their right to go to school, challenging expert opinion on what it means to have autism, and persuading society to accept those who are different. This is also a story of fierce controversies—from the question of whether there is truly an autism “epidemic,” and whether vaccines played a part in it; to scandals involving “facilitated communication,” one of many treatments that have proved to be blind alleys; to stark disagreements about whether scientists should pursue a cure for autism. There are dark turns too: we learn about experimenters feeding LSD to children with autism, or shocking them with electricity to change their behavior; and the authors reveal compelling evidence that Hans Asperger, discoverer of the syndrome named after him, participated in the Nazi program that consigned disabled children to death. By turns intimate and panoramic, In a Different Key takes us on a journey from an era when families were shamed and children were condemned to institutions to one in which a cadre of people with autism push not simply for inclusion, but for a new understanding of autism: as difference rather than disability.
Amazon.com
At nearly 700 pages, this is perhaps one of the most comprehensive books out there right now that cover the whole history of autism as a diagnosis. It opens with an introduction to Donald, the very first person ever officially diagnosed with autism. While not entirely non-verbal, he was pretty close at the start. He found peace in patterns and could easily slip into tantrums if things were not just so. On the flip side though, his love of patterns led to a discovery of his incredible sense of recall. At the family doctor's urging, Donald's mother agreed to have him institutionalized. This was during a time when upon arriving at an institution, children would often immediately have personal possessions confiscated, instead provided with communal toys and other materials, and be changed into a "uniform" of tank top and shorts. The stays were not permanent, typically only lasting up to 3 months at a time, 9 months at most. Donald, however, ended up staying at one such place for over a year, getting his diagnosis changed almost regularly -- everything from glandular disorder to Heller's Disease to schizophrenia.
Donald was later referred to Dr. Leo Kanner, who at the time was working at Harriet Lane Home (a branch of John Hopkins). In 1942, Kanner wrote to Donald's mother, describing Donald's condition now as "autistic disturbances of affective contact, an inability of children from earliest infancy to relate themselves to other people." Though Donald did well in his early years of schooling, thriving on the routine of the school's scheduling of a day, by middle-grade age he was beginning to show signs of struggling academically, so was sent to live on a family friend's farm, his parents hoping that the routine of farm life would prove therapeutic and productive for him. As it turns out, he did thrive on the structure! He was able to return to public school during his high school years and seemed to do pretty well. Though he still struggled with English and History courses, he seemed to have a photographic memory when it came to math computations. Donald also had a nice social life after joining Future Farmers of America, Drama Club and Choir. He got decent grades, was able to graduate and go on to community college courses like any high school kid.
Kanner became the first doctor to use the term "autistic" in this context, but he did not make up the term himself. In fact, it was already in use in the early 1900s to describe a trait of schizophrenic patients when they would seem to detach themselves from reality, instead becoming consumed with their own inner world. Kanner himself was quick to explain, "I didn't discover autism. It was there before." Also, it wasn't like he just decided to slap a name on his patients' condition one day all willy-nilly. In fact, his decision to label the behavior as autistic was the result of nearly four years of research, collecting data, pouring over case studies, etc. It's at this point in In A Different Key that Donvan & Zucker back up Kanner's words with historical references dating back to the 16-17th century of documented cases of people considered "village idiot" or the like who were most likely actually somewhere on the autistic spectrum.
One of the other pivotal cases mentioned in this book is that of Steven Tepper. In the 1960s, Tepper was a newborn who had recently developed a case of jaundice. His mother was troubled by the look of him, disappointed that she didn't have a pretty, pink baby. The jaundice eventually passed and Steven did regain his normal newborn hue. However, a few years later, Steven was diagnosed with autism and his mother was told that it developed when children were not sufficiently loved by their mothers. Seriously! Steven's mother was reminded of her thoughts during Steven's jaundice days and immediately felt deep guilt. She was just one of many women who would be deemed "Refrigerator Mothers", after an article TIME Magazine ran in April 1948 ("Medicine: Frosted Children"), referencing Dr. Kanner -- of all people! -- saying that autism stemmed from children being emotionally iced out by their cold, distanced mothers. This completely went against his stance earlier in the 1940s, when he was saying parents were not to be blamed, that it was an innate condition that developed in the brain. When he was later questioned on his change in professional opinion, he struggled to give a clear answer, or either say that he never said any such thing or that his words had been taken out of context. By the 1960s he was trying to go back to his original opinion that parents were not the culprits but people were slow to trust, at least until one speech he gave where he just came out and said in frustration, "Herewith, I acquit you people as parents!"
The "Refrigerator Mother" belief didn't go away for quite some time though, mostly thanks to statements from Dr. Bruno Bettleheim, who still very much preached the theory. He even made an appearance on the Dick Cavett show in the 1970s and upped the theory by one saying that not only was the condition due to the coldness of mothers but also because those mothers secretly wanted the afflicted child dead. A medical professional saying this. UGH!
Ruth Sullivan, mother to an autistic son, was one to step up and shoot down this theory once and for all. Herself a former Army nurse with a master's degree in public health, her husband an English professor, they believed they were intelligent people who could find the real truth. She became an advocate for developing support groups for parents and families of autistic patients. When she requested reading materials to study up on, she was advised by medical staff not to do any reading on her own, that the material out there would only confuse her. But you're not going to deter a dedicated mother that easily! She eventually found an advocacy partner in Bernard Rimland, a former San Diego locksmith who went on to study psychology at SDSU, later earning his doctorate at Penn State. Rimland, also a parent of an autistic child, saw how gentle and patient his wife was with their son and immediately knew the "Refrigerator Mother" theory was BS. He spent over four years compiling notes on every documented case of autism ever up to that point (at the time, about 230). He spoke with colleagues and even reached out to Kanner and Bettleheim. While Bettleheim turned him away (of course, Rimland was essentially trying to discredit him lol), Kanner was receptive to help. In fact, when Rimland compiled all his work into a book, Infantile Autism, Kanner wrote the foreword.
In the 1970s, psychiatrist Lorna Wing, also the parent of an autistic child, published her book Autistic Children, where she coined the term "autistic spectrum". As she was known to put it, "Nature never draws a line without smudging it," meaning most things tend to fall in a range or gray area of something, so the study of autism would most benefit from the use of a spectrum. Her work with autism later led to Asperger's Syndrome being deemed its own diagnosis, on the spectrum but also given its own distinction. When Wing was first studying Asperger's Syndrome, patients were actually still being labeled "autistic psychopaths". She deemed this too harsh a term with too much negative connotation, so in her notes she chose to refer to it as Asperger's Syndrome, after Hans Asperger, the man credited with first noting distinct differences between what was being considered classic autistic traits and what his patients were displaying. Wing found parents of patients seemed to respond more calmly to a diagnosis of "Asperger's" than when they heard "autism". Her decision to use the Asperger name caught on with other medical professionals. By 1992, World Health Organization included Asperger's Syndrome in their International Classification of Diseases Compendium. In 1993, the American Psychiatric Association got on board and added it to their DSM (autism itself had not been included in the DSM until 1980). The APA ended up dropping Asperger's from the DSM in 2013, stating a lack of concrete evidence that it was actually its own thing. This understandably upset a number of people diagnosed with Asperger's. It still remains absent from current editions of the DSM, everything instead labeled under "Autistic Spectrum Disorder". In the epilogue of this book, the authors discuss how the metaphorical ball has been dropped when it comes to research into adult autism (programs or communities encouraging continuing education, job placement, improving quality of life, etc.), the focus primarily being on treating children, but they do offer some notes on projects currently in the works to remedy that.
This book gave me a fair amount of history I had never even remotely heard about before! How far this area of medicine has come ... but how far we still need to go, right?! It's insane to think of what the early patients were forced to endure because the science just wasn't there so doctors just basically had to work on superstition and empty theories that ended up ruining the lives of so many. Thank God we've made such strides since then.
As I've said, this read was definitely an education. I can't deny that. Still, if I'm being honest, I don't know that I could say that it's what you'd call highly readable. It was in parts, but there were also sections where it seemed like information was being repeated numerous times... so I don't feel like this is a solid cover to cover fly-through read. I would still recommend it if this is a topic you want to learn more about, because the facts are definitely covered here. I would suggest maybe reading a chapter or two a day, in between whatever lighter read you have going on at the moment, and give your brain spaces to process what all is covered in these pages. Otherwise it might feel a little overwhelming. I applaud the authors for delving in so whole-heartedly, without this read I would not know just how far back this condition dates!
FTC Disclaimer: BloggingForBooks.com and Crown Publishers kindly provided me with a complimentary copy of this book in exchange for an honest review. The opinions above are entirely my own.
0
