In a Different Key: The Story of Autism
by John Donvan, Caren Zucker
Source: Blogging for Books, Broadway Books
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.
It is the story of women like Ruth Sullivan, who rebelled against a medical establishment that blamed cold and rejecting “refrigerator mothers” for causing autism; and of fathers who pushed scientists to dig harder for treatments. Many others played starring roles too: doctors like Leo Kanner, who pioneered our understanding of autism; lawyers like Tom Gilhool, who took the families’ battle for education to the courtroom; scientists who sparred over how to treat autism; and those with autism, like Temple Grandin, Alex Plank, and Ari Ne’eman, who explained their inner worlds and championed the philosophy of neurodiversity.
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 a difference rather than disability.
5 of 5 Stars
I’ve been curious about autism for many years and thought I knew at least a decent amount about the history of it, this book taught me otherwise. While I knew a little about the Eugenics movement prior to reading this, this opened my eyes to the impact it had on autism specifically. I felt my heart going out to the many women who were blamed entirely and referred to as ‘refrigerator mothers’. While heart-wrenching and sometimes horrifying, I appreciated the look into how autistic children and adults used to be treated. I was also overjoyed as new techniques and solutions were learned, giving these individuals new possibilities.
I’ve been trying to read more and more non-fiction but I admit this book intimidated me at over 500 pages even without the notes and bibliography toward the back of the book. Unlike with my usual fiction books, I found myself reading this much more slowly and in chunks along with my regular reading. While a lot of nonfiction I’ve read in the past for school has been very clinical I really appreciated the warmth I found in this book. Instead of just a dry history, it focuses more on the individual people who played major roles in either autism advocacy, research, or treatment. I especially loved the stories sprinkled throughout about specific families struggling with autistic children and how to best care for them. I did wish on occasion for more perspective directly from autistic individuals along with their families.
As much as I appreciated this book and am glad that I read it, I know it’s not something that everyone would be interested in. If you have anyone in your family who happens to be on the autism spectrum, I highly recommend this book. I’d also suggest it even if you are only curious and wanting to learn more because it’s both incredibly engaging and informative. After reading this I’m even more curious to continue learning more and am looking forward to picking up a few of the books that were mentioned in this one.