Today most of us have at least a small understanding of autism. That has certainly not been the case over the last century. In A Different Key, is a new book that discusses the history of the diagnosis and it’s range of treatments. Like other diagnosis of learning differences, mental health and combinations of the two, the medical, psychological and scientific world is still working to fully understand this disorder.
I first became aware of autism in the spring of 1989 when I took a short-term role as the Adult Services Librarian in a small (now huge, sprawling suburban) library near Indianapolis. The television show M*A*S*H was not long past and was still beloved. That summer, in what adult librarians often grimly refer to as the “disease of the month,” books on autism cropped up in the review sources.I purchased the one by William Christopher (aka M*A*S*H’s Father Mulcahy) . titled Mixed Blessings. Then came Dustin Hoffman as Rainman. The next time I encountered autism was in the mid-1990s when friends’ son received the diagnosis of Asperger’s.
Where the Book Succeeded
In a Different Key, like the The Immortal Life of Henrietta Lacks, takes readers thru the trial from the beginnings with early 20th century patient Archie, who was put into a mental hospital though highly functioning, to Donald who got to live a much more normal life to a lot of others between and after. Told in a journalistic style that keeps readers captivated, Key examines each new approach to treatment, each new group formed to raise awareness–as well as their personalities, squabbles and lobbying efforts.
The parents–often it is naturally the mother, but not always–speak far louder than the experts. They fight to have the story of life with autism told. The dawning of the celebrity as somehow “credible” expert follows this. While scientists took their normal approach of study, wait, analyze and revise over and over, parents found Bobby Kennedy, Jr. and Jenny McCartney among others, who tried to champion parts of their cause. Most interesting to me, was how the great vaccine debate misused statements by some parents to help its “cause.” Throughout the story, it is exposed how statistics were used and manipulated. Experts were and were not experts. All the while, the parents were putting in the heroic hours required to raise their autistic children and to plan for their children’s lives after the parents would someday pass away, were getting insufficient help from just about anywhere that should have been helping.
Where the Book Failed
My complaint with this very engaging and informative book was its focus on the highest functioning autistics. Where were the non-verbal, self-harming kids? Where were the ones who destroyed their physical surroundings, who bashed their heads till they bled who made life all but unlivable for their parents and siblings? Where were the kids in families who fell thru the cracks–not eligible for medicaid, but not having private insurance to pay for intensive therapies? Where were the stories of those kids, their parents, their siblings and their caregivers?
I felt this book had an agenda of it’s own (no surprise) and that was to go along with cool notion of Aspies (Asperger’s Syndrome) as hipster social “awkwards” while sweeping the (sorry but this word is a play on hipster) “hard-core” autistics. The ones who bankrupt their parents, destroy their parents marriage and take away opportunities from their siblings. Or, put another way, those who loving parents struggle to care for to the point of complete collapse, but continue to fight for those kids’ rights, just as they do for those of the typically-developing children. Where were the statistics on abuse of such kids? On divorce and bankruptcy filings for families of such kids?
While the book IS tremendous and DOES do a fabulous job of educating us, it stops short. It shies away from the “other” side of Autism. It’s like reading a book on Joseph and Rose Kennedy and their children and having no mention that Jack and Bobby were assassinated and no mention that Rosemary was lobotomized.
In spite of its length, I recommend it to Book Clubs to read over two months. It will certainly generate great discussion and I believe Clubs that have read Henreitta Lacks and found that book fascinating will enjoy this one as well. I would suggest though that clubs stress civility and that discussion stay strictly on the book and no on personal view on vaccination or various treatments. What works for one, still does not work for all, with autism and while the book conclusively deals with the vaccination issue, there are parents who, understandably, cling to their belief that the vaccine is the issue. No Club should break up over a discussion of what is written in a book–just keep the discussion relentlessly on the book and not personal beliefs.
In a Different Key: The Story of Autism by John Donvan and Caren Zucker