Review: In a Different Key:The Story of Autism

John Donvan and Caren Zucker wrote a detailed history of autism, In a Different Key: The Story of Autism. It is a long book, 552 pages, with extensive notes and a bibliography.

The book begins with story of a young boy who from infancy did not connect socially. He could verbalize but not in a way that connected with his parents. They took him to one doctor after another, searching for answers. When he began refusing to eat the parents gave in to medical advice. Before he turned three years old, he was placed in an institution. 

Donald did not thrive there and his parents were not ready to give up. After less than a year they took him home. They arranged for him to be seen by a child psychiatrist at John Hopkins University. For a period of four years Dr. Kanner saw their son at intervals of time. He made the first diagnosis of a condition he called “autistic disturbance of affective contact” in 1942.

The underlying theme of the book is a story of parent involvement. Parents were fighting for the life and health of their child. They were the driving force for research and treatment methods.

In 1962 Bernard Rimland, a parent of an autistic child, published a book based on all the research he could find. He did not believe the current theory that “refrigerator mothers” was the cause of autism. He did not believe that his wife caused his son’s autism. The book was titled Infantile Autism: The Syndrome and Its Implications for a Neural Theory of Behavior, and it had a foreword written by Dr. Kanner.

In the 1960s attention in the United States turned to methods of treatment. There were two approaches: behavior modification or intensive one on one teaching. In London research was centered on getting a better definition of autism as well as trying to assess the prevalence. One of the lead researchers, Lorna Wing, was a parent of an autistic child. Her research led to the term autism spectrum and the diagnosis of Asperger Syndrome.

In 1966 Victor Lotter published a study that estimated 4.5 in 10,000 children were autistic, although the definition of autism was still a little fuzzy.

Not much was happening in the area of biomedical research. During an annual meeting of the National Society of Autistic Children an arrangement was made to have medical and laboratory tests done for 78 children. A quote from the book gives the results.

The biologically based observations included an increased presence of antibodies to the herpes simplex virus, higher zinc levels, and a higher-than-expected degree of intestinal irritation—among many others. Any of these was a potential lead for further research.

But the leads were never followed, except, perhaps by one of the parents who organized the effort, Bernie Rimland. This is not because the work was disparaged. It was because, in 1976, with the exception of Rimland and very few others, the scientific community was almost entirely uninterested in the biology of autism.  p. 378

The parent groups did achieve programs that allowed children with autism to attend public school in the late 1960s.

In the 1990s two new organizations were started by parents. The National Alliance for Autism Research was started by Eric and Karen London. Cure Autism Now was started by Jon and Portia Shestack.

In 1998 pediatric gastroenterologist Andrew Wakefield had 12 young patients. Eleven of them had received the MMR vaccine and had intestinal problems, along with a regression and behavior. Dr. Wakefield found inflammation of the intestine and measles virus in the lining of the intestine. The question was raised. Did the MMR vaccine cause the symptoms?

In following years parent groups became divided over the issue of vaccines. In 2009 the case of a girl with debilitating autism that had been brought to the US Court of Federal Claims was ruled on. No connection between vaccines and autism.

In 2010 Dr. Wakefield faced accusations and eventually had his medical license stripped. His research paper that was published in the Lancet in 1998 was retracted. Further research investigating the safety of vaccines seemed unlikely.

But a paragraph in the book sticks in my mind.

As with any previous understanding of autism, the spectrum construct is not without drawbacks, a swing back to the splitters [separating groups according to traits] is quite possible if, for example, further scientific inquiry determines that clusters of autistic behaviors that look similar in fact rise from divergent causes—environmental, genetic or other. The study of cancer offers an analogy. For years “cancer” survived as an umbrella term for all cancers, until the field of oncology learned that different cancers are in fact radically different, each with its own signature and its own distinct biological process—and thus was forced down the path of the splitters. Autism too might turn out to be a plural entity. p.374

The book was published in 2016, and we are still debating the cause of autism. The rate of autism diagnosis continues to escalate. According to the CDC, 1 in 36 children is on the autism spectrum in the United States.

My family’s crisis of health following the MMR vaccine is vivid in my memory. It was 1982, three years after an updated MMR vaccine was approved for use in the United States. Years later I would realize that I had observed the same medical problems that Dr. Wakefield observed in 1998. Click here to read about my family’s experience. 

Parent groups still meet and have conferences. The Autism Health Summit takes place in April.

A new study, published in January 2025 states that the childhood vaccine schedule is a likely factor in the increased autism diagnosis.

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