In “A Different Key: The Story of Autism,” authors John Donvan and Caren Zucker chronicle the decades-long struggle of families to obtain an accurate diagnosis and treatment for children with autism. The authors discuss their book Feb. 9 at Town Hall Seattle.
A 560-page history of autism sounds intimidating, but fear not. “In a Different Key: The Story of Autism” by John Donvan and Caren Zucker (Crown, 560 pp., $30) takes an accessible approach that sheds much light on this human condition.
The book is essentially the history of advocacy surrounding autism, an effort that moved the mysterious “disorder” from the period when a label was first put on it in the mid 20th century to a well-known cause that now attracts celebrities to its major fundraising events.
This advocacy has been carried out mostly by the parents of children who are autistic, fathers and mothers desperate to both understand what has happened to their sons and daughters, and to get them effective medical and psychiatric care.
John Donvan and Caren Zucker
The co-authors of “In a Different Key” will discuss their book at 7:30 p.m. Tuesday, Feb. 9, at Town Hall Seattle, 1119 Eighth Ave. Tickets are $5 at townhallseattle.org and at the door beginning at 6:30 p.m. Information: 206-652-4255.
In 1942, Leo Kanner, a child psychiatrist at Johns Hopkins University, used the word autistic in a letter to the mother of Donald Triplett of Forest, Miss., to describe the behavior of her son, his first recorded use of the term. To get to that point, the Tripletts had struggled against contemporary attitudes that such children were best placed in institutions, that they were a danger to society and perhaps not fully human.
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Thousands of parents, family by family, would repeat this struggle, eventually organizing into groups to engage in a continuing fight for an accurate diagnosis for their children, for a place for them in schools and for research to find a cause, a treatment and a cure.
Then the organizations started fighting each other.
Some aligned with doctors who described autism in a particular way, and with psychiatrists, neurologists and educators who would treat these children accordingly. Others found different experts to back. Theories about autism’s cause were offered, discredited and abandoned. A hero one day could become a villain the next.
The work of Hans Asperger, an Austrian pediatrician also suspected of cooperating with the Nazis, grew into a separate diagnosis for people who had traits of autism but were not as shut off socially as were those with “real autism,” a term used by some families caring for severely affected children — and adults. In 2013, the Diagnostic and Statistical Manual of Mental Disorders eliminated Aspergers as a separate diagnosis, finding Autistic Spectrum Disorder a more helpful description that encompassed several behaviors.
Claims made for the cause of autism also fell in and out of favor. Probably the most infamous is Andrew Wakefield’s 1998 now-discredited paper contending that vaccines were to blame.
Even the prevalence of autism has been the subject of dispute. Starting in the 1990s, autism began to be described as an epidemic, but a look at the numbers finds that claim sunk in “statistical quicksand.”
In telling the struggle to make the general public aware of autism, the authors recount the history of this condition. Not in dry clinical terms, but through the human stories of those raising autistic children, of those trying to treat, study and research it and those who are autistic. Some are quite happy, thank you, to be left alone with their neurodiversity and don’t consider it a disorder to be cured.
The authors rely heavily on teasing readers on to the next chapter, making encompassing statements followed by staccato versions of “then everything changed.”
That broadcast style is to be expected from Donvan and Zucker, the two ABC television correspondents. Both have personal experience with autism: Zucker as the mother of a son with autism and Donvan through his wife’s brother.
The teaser device may be overused, but it is effective in drawing the reader on through 560 fascinating pages.