In A Different Key: The Story of Autism
October 25, 2011, is a day I will never forget. It was the day that my son, Stanley, was diagnosed with autism. I felt saddened but relieved as the team of specialists reviewed the diagnosis with my husband and me. Then, only 2 years old, Stanley was unable to hold a bottle by himself, he could not feed himself, he seemed to hate eating any type of food, and his sleeping was erratic. Meal times were arduous since Stanley cried and screamed while my husband tried to spoon-feed him pureed infant food. After dinner his face was always dripping with sweat. To an outsider it looked like we were torturing him. We could not find adequate care for Stanley. The one daycare center we could afford on our meager graduate school stipend kicked Stanley out because he would not stop crying, he would not nap, and he refused to eat. At home he never wanted to play with the many toys he had, instead he delighted in watching the garage door go up and down, or going for long silent walks with me. Stanley’s speech, which had started around his first birthday, had disappeared completely by the time he was 2 and, most troubling of all, he did not seem to recognize his own name.
My gut knew something was wrong. For more than a year I told the pediatrician my concerns. Every time I was told that children develop at different speeds and I should give Stanley more time to catch up. I am a new mom and should not worry so much, was another common refrain. This advice terrifically annoyed me. I wanted someone to take my concerns seriously. I wanted someone to help my son be a normal, healthy kid.
Fortunately, after Stanley was diagnosed with autism the floodgates for services opened and within two months he was enrolled in University of North Carolina Autism TEACCH, (Treatment and Education of Autistic and Related Communication Handicapped Children) an educational program for children with autism and getting weekly speech, play, feeding, and occupational therapy through Birth to Three, a federally funded program for children ages 0-3 who have disabilities.
In my quest to know more about autism and treatment options for my son I have read numerous books about the condition. Typically, these books are written for parents, teachers, or treatment providers and set out to explain how to improve behavior, language, or social skills.
In a Different Key: The Story of Autism by John Donvan and Caren Zucker is unique, as it sets out to explain the entire history of autism. Books of this scope have been written on other medical topics, but this type of book is a first for autism. Both authors are award-winning television journalists, and the book reads more like a compelling documentary script rather than a history book. Given the tremendous amount of personal detail and extensive research the book is quite long—definitely not a quick read—but the authors do an excellent job of keeping the story engaging and, surprisingly, a bit of a page-turner.
So what is autism? According to Donvan and Zucker the answer to that question is still hotly debated. Within the autism community there is a saying that if you met one person with autism you have met one person with autism. Symptoms in one person with autism might not be present in another person with autism. To make matters more difficult there is no biological marker, no blood or DNA test that can be done to determine a diagnosis. An autism diagnosis, unlike Down syndrome, lies strictly in the eye of the beholder.
According to Donvan and Zucker in 2013 when the fifth edition of Diagnostic and Statistical Manuel of Mental Disorders, commonly referred to as the DSM, was being written, the American Psychiatric Association (APA) made major revisions to the definition of autism. The APA did away with the previously held four categories of autism including Asperger’s syndrome and the commonly used catch-all: Pervasive Developmental Disorder Not Otherwise Specified, or PDD-NOS, which was basically a way a doctor could diagnose a borderline case of autism.
“Arguably, the problems were even worse in the late 1990s, given how frequently the DSM kept moving the goalposts for autism. People diagnosed with autism using the DSM in 1997, for example, might not have qualified for it using an earlier DSM in 1990 and vice versa.”
These major changes to the DSM underscore the complexities of defining autism. In fact, throughout the entire book, Donvan and Zucker never clearly state what autism is. This might frustrate some readers who are less personally familiar with the condition. But the truth is that the medical community is still learning about this neurological condition, which is why basic questions such as causes, its prevalence now compared to 50 years ago, and its different effects across individual cases, cannot be answered. According to Donvan and Zucker we are currently in the age of lumping autism together under one definition simply because we do not know enough about autism to split it apart effectively.
“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 was thus forced down the path of the splitters. Autism too might turn out to be a plural entity.”
According to Donvan and Zucker we are currently in the age of lumping autism together under one definition simply because we do not know enough about autism to split it apart effectively.
The autism community is plagued with many controversial beliefs that Donvan and Zucker describe in rich detail. The two most recent controversial issues that have divided the autism community are neurodiversity and “mercury moms.” Neurodiversity uses an argument similar to gay rights or, in earlier generations civil rights, that trying to change people with neurodiversity (autism) to fit into a neurotypical world is wrong. Instead, neurodiversity should be embraced and accepted. This faction considers anything less than total acceptance bigotry. The phrases “don’t mourn for us” or “don’t cure us” are popular in this circle.
To parents like myself with more severely affected children, the idea of not trying to improve a child with autism seems as dangerously misinformed about the condition as having the condition itself. Roughly 40 percent of children diagnosed with autism never learn how to verbally communicate. To parents who have tried everything and still have a child who cannot speak, the argument of neurodiversity seems absurd or at least, shall we say, too radically chic for its own practical good.
“Later Jim [Jim Sinclair, autism-rights movement activist co-founder of Autism Network International] published an online essay on the talk, in which he fleshed out his critique of the parent advocacy movement. The thrust of his argument was this: rather than always making life better for their children, parents had insulted their children’s humanity and undermined their dignity.”
The other controversy is perhaps better known in the late 1990s: a British doctor named Andrew Wakefield wrote a paper in the medical journal The Lancet. Wakefield never mentioned mercury in his paper; that idea would come a short time later from an American mother. Instead, Wakefield had done a study on 12 children who showed autistic behaviors and he found traces of the measles virus in their intestinal tracts. The measles virus was given to each child as part of the standard measles, mumps, and rubella, or MMR vaccine.
To parents like myself with more severely affected children, the idea of not trying to improve a child with autism seems as dangerously misinformed about the condition as having the condition itself. Roughly 40 percent of children diagnosed with autism never learn how to verbally communicate. To parents who have tried everything and still have a child who cannot speak, the argument of neurodiversity seems absurd or at least, shall we say, too radically chic for its own practical good.
“No one reading the paper could miss what its authors were getting at: that the live measles virus in the MMR vaccine might provoke inflammation in the gut, and that this inflammation might in turn cause the brain to become inflamed, resulting in autism.”
Wakefield’s claim made international news and caused a vaccine panic. Although he never said that vaccines cause autism he questioned the safety of vaccines, which the media reported on incessantly. Lyn Redwood, a registered nurse, took Wakefield’s claim one step further, she testified before Congress that thimerosal, the ingredient that keeps vaccines bacteria-free, was the reason her son had autism. She became known as a “mercury mom,” a faction within the autism community that, to this day, believes mercury in vaccines is the cause of autism.
Ultimately, Wakefield was discredited and had his medical license revoked. He had received $80,000 dollars to find evidence for a product liability lawsuit. In the United States parents went to court to sue drug companies, but lawyers and medical experts could never clearly point to thimerosal as the culprit for any child’s autism.
“One by one, the rest of the test cases also failed. After that, appeals were filed, but they went nowhere. In the summer of 2010, the last of these appeals—brought by the parents of Michelle Cedillo—was denied. Soon the lawyers who had encouraged the parents to sue lost interest, seeing that there would never be a payday. The science simply was not on their side.”
Ultimately, drug companies removed thimerosal from all vaccines and “mercury moms” fell to the fringe of society, much like UFO believers or the Flat Earth Society.
In a Different Key: The Story of Autism is a story-based history filled with numerous personal accounts about remarkable families who faced near impossible odds and fought tirelessly for a child with autism. The stories are deeply moving and as a parent of a child with autism they inspired me deeply. One such story is Donald Triplett, born in the 1930s in Mississippi; Triplett is the first person in the United States diagnosed with autism by Leo Kanner. Triplett, still alive today, was born into a wealthy family and grew up in a tiny town. The combination of wealth and close-knit neighbors allowed Triplett to attend public school long before school districts accepted children with autism and graduate from college. Triplett was born at a time when eugenics was popular and feeblemindedness, as it was professionally called, was seen as a threat to society, so families with mentally handicapped children were strongly compelled by doctors to give up paternal rights and place the child in institutions run by the state.
“Parents who sent their children to institutions, who were usually following doctors’ orders, could only pray that the place chosen was not one of the “snake pits.” With sickening regularity, stories of extreme neglect and outright abuse at many intuitions broke out into daylight. Yet the outrage and indignation these stories stirred up almost always, with the same regularity, faded fast, with little or nothing done to improve conditions.”
Archie Castro was less fortunate than Triplett. Castro was diagnosed as insane at the age of 5 in 1919 and placed in a state institution in West Virginia. Castro wound up in a snake-pit hospital and suffered severe abuse. His older sister finally won his release in 1988. By then Castro had spent 74 years in a state hospital for what is now known to be autism. Castro’s story is a sad one. All of his teeth had been pulled out due to uncontrolled biting, a common problem in children with severe autism. The few words he spoke at the age of 5 were completely lost. He never grew beyond the size of a third-grader. But through his sister’s help Castro was able to embark on a second childhood after leaving the institution. He learned how to ride a tricycle; he got his first toy, a teddy bear that he carried with him everywhere. It made me thankful the era of institutionalization, that lasted until the early 1970s, is over.
For such a complex history about a complex neurological condition the authors do an amazing job of painting a sensitive and engaging story. That leaves the reader filled with hope about the future of autism. Even amid its sad stories, the book is ultimately uplifting.
I absolutely loved In a Different Key: The Story of Autism and would highly recommend it to anyone curious about autism. My one small complaint about the book would be its lack of diversity. While reading it I was always curious as to what happened to black children who had autism over the last 75 years. Throughout the entire book only one black mother is mentioned. She worked with other parents (all white) and successfully lobbied for autism funding in North Carolina in the 1970s. It is a terrific story, but the only detail we learn about her, aside from her name, is that she was a good public speaker and had a son with autism. It is not in keeping with the rich details that Donald Triplett and Archie Castro offer elsewhere. A more racially-diverse story would have been nice. There is certainly a project for someone—journalist or scholar—to tell the story of autism as it has affected minority parents: African American, Latino, and Native American. According to the CDC, autism currently affects 1 in 68 boys in the United States. That means there are plenty of minority kids with this neurological condition too. But this is a small complaint about an otherwise superb book that everyone interested in autism should read.
For such a complex history about a complex neurological condition the authors do an amazing job of painting a sensitive and engaging story that leaves the reader filled with hope about the future of autism. Even amid its sad stories, the book is ultimately uplifting. It reminds me of a scene from one of my favorite plays, Marvin’s Room by Scott McPherson (1990). The play tells the story of two estranged middle-aged sisters, one who has cared for their ailing father and another who has been a single mom to two troubled boys. The single mom is perplexed and horrified by the quiet life her sister leads, filled with doctor appointments, messy accidents, spoon-fed meals, and erratic sleeping.
The caretaker sister is surprised that someone would think her life is dull and depressing. “You think my life is sad? I couldn’t think of a better life. I’ve got such love. So much love. I’ve had such love in my life,” she says to her sister. When I saw the play as a teenager I could not understand how someone so disabled by dementia could provide joy and fulfillment to another person. But as the mom of a special-needs child, I understand her completely. I too am filled with an overwhelming sense of love and joy and would not change a thing. The future for my son is bright and I look forward to seeing where this journey will take me.
