In a Different Key

"<br/> In A Different Key: The Story of Autism, a newly published and critically acclaimed non-fiction book by John Donvan and Caren Zucker, looks intimidating at first glance, but inside it weaves a riveting and heartwarming narrative. In this well-researched book, the authors, both television journalists and family members of individuals with autism, attempt to tell the story of Autism Spectrum Disorder (ASD). This is not a dry scientific textbook but instead a deep and honest look at how history, culture, politics, and society constantly shape and re-shape our perspectives on something as seemingly straightforward as a neurodevelopmental disorder. <br/><br/> The book begins and ends with the story of Donald Triplett from Forest, Mississippi, the first child formerly recognized as having the unique set of behaviors that we now associate with ASD. He was diagnosed by Leo Kanner, one of the first child psychiatrists. There are many firsts in this book. In the 1930s, when Donald’s story begins, the prevailing medical and cultural views maintained that individuals with disabilities (hearing and vision impairment, mental illness, intellectual disability, epilepsy, etc.) would be best served in institutions, basically removed from society. Desperate and completely befuddled by his behavior, which his mother finally labeled as “hopelessly insane,” Donald was sent to an institution for a year before his parents finally could not bear the negative changes they saw in his behavior and functioning. Removed from the institution, his wealthy and politically powerful parents took him to Johns-Hopkins to be evaluated by Dr. Kanner, and finally brought him home, to eventually be educated, work, and live a happy and successful life in his own tight-knit and accepting community. <br/><br/> This book covers a lot of territory and more than likely, there will be parts of this autism story that speak to certain readers more than other parts. As a clinical child psychologist that specializes in the diagnosis and evaluation of ASD, I was fascinated by the detailed history of changes in the diagnostic criteria over time and the various attempts and shortcomings with trying to find a “prevalence” rate. But, as a sister of an adult with ASD, the story of fighting to obtain educational equality was the most familiar and emotional one for me, as this was part of my family’s own autism story in the late 1980s and early 1990s. As a clinical researcher, the struggle to get ASD recognized as a neurodevelopmental disorder in need of serious biomedical research and funding support, is one I still hold near and dear to my heart. ASD biomedical research continues to lag critically behind that of other conditions such as Alzheimer’s disease and schizophrenia, crippling the ability to both fully understand the mechanisms and comorbidities of the condition and to formulate empirically-validated treatments. (For more information or to help raise awareness of this need, please visit http://takesbrains.org). The history of the rise of empirically-validated treatment and educational methods such as applied behavior analysis (ABA) therapy and the TEACCH program is likely to be new and interesting information to both professionals and lay audiences, as it is not typically taught in graduate school programs. <br/><br/> There are warning stories as well - serious setbacks to the field that resulted in lack of trust among professionals and family members (i.e. the “refrigerator mother” pseudo-Freudian theory disseminated by a charming art history major), discord both among and between different parental and autism self-advocacy groups, and the widespread use of potentially dangerous and damaging treatment methods that preyed on parent’s hope without validated scientific evidence (i.e. facilitated communication, chelation therapy and other alternative treatment methods, and vaccinations as causes of ASD).<br/><br/> Nevertheless, this is ultimately a hopeful book. Despite the fact that it is hard to look at some of the well-intentioned but misguided mistakes made in the past, seeing the progress made and the heroic and longsuffering battles fought by teams of parents, professionals, and self-advocates for acceptance and inclusion of ASD, can only be described as inspiring. This book allows the reader to see this incredible cultural and societal transformation. By following the story of this one individual with ASD, we can see the revolutionary shift that took place in less than a century, less than a lifetime. Donald Triplett moved from a time when individuals with disabilities were “secrets, never to be spoken of again,” to the current day. A time when Donald was able to finish high school and college, join a fraternity, work in his family’s bank, learn to drive a car, play golf, and become a happy, productive, and beloved member of his community. In A Different Key encourages its readers to understand and be empathetic with the past, learn and be inspired by what has already been accomplished, and to continue pushing onward into the future. <br/><br/><br/> <br/><br/><br/>"