Autism impacts countless lives across America. Among those individuals diagnosed with autism and their family and friends, the amount of people the disorder has touched in some way numbers in the thousands, stretching back across time to the first diagnosed case in a study in 1943.
Authors John Donvan and Caren Zucker introduced this storied history during their March 14 talk on their book, In a Different Key: The Story of Autism.
The Greater New York City Society for Neuroscience sponsored the event, held at the Baruch Performing Arts Center, in honor of the society’s Brain Awareness Week.
“Who has a family member that has autism?” Zucker asked the audience, beginning the program in earnest. A fair number of hands shot up in the crowd. “Who in the audience has autism?” Another person raised their hand. “And is anyone else working in the field [of autism research] as a professional?” Donvan chimed in. More hands were raised.
Donvan, a television correspondent for ABC, and Zucker, an investigative journalist, have personal ties to autism themselves. Zucker’s first child was diagnosed with autism in 1996. Meanwhile, Donvan’s mother-in-law opened the first school in Israel for children with autism.
Autism is characterized by repetitive behaviors and difficulties with socialization and communication.
However, that remains a fairly broad set of symptoms, leading autism to be, as Donvan called, “a very confusingly defined syndrome.” Autistic people can come from any background, any race and ethnicity and can be of any gender.
Most autistic people will find social interaction difficult, ranging from not understanding body language to not recognizing their own name being called when they are young. Their speech can be impacted, with some autistics being able to communicate and others living non-verbally their entire lives. Autism exists as a spectrum. Some people can live independently, while others will be under the care of other people their entire lives.
For a decade, the two collaborated on a number of investigative television pieces portraying the lives of people living with autism, expounding upon every romance with autism, women with autism and how the siblings of people with autism felt.
Donvan and Zucker intended to show people with autism as they were, and did not want to promote “magic cures” for autism, as many others were doing.
“We really wanted [the audience] to understand what autism is,” said Zucker.
This led the two to write their book.
With Donald Triplett—the first child diagnosed with autism—as a framing device, Donvan and Zucker were able to trace back through the stories of those with autism, elaborating on their individual struggles along the way.
Triplett was born in Forest, Mississippi, in 1933. His parents were unusually well-educated and well-off for the community, explained Donvan, and so they afforded him the means both financially and socially to become diagnosed and later accepted into the community.
As a child, Triplett had little social interest in his own parents and exhibited an unusual attachment to objects, throwing tantrums if he found furniture to be moved from its original position.
However, he also exhibited an impressive memory, able to recount songs he had heard only once, doing so in perfect pitch.
With his mother despairing and calling him “hopelessly insane,” Triplett’s family took him to the best doctors, having the means and the money to do so.
What the Tripletts finally stumbled upon was autism as the cause for their child’s manner, something that had only been acknowledged previously as “idiocy.”
Like many “moronic” children before him, Zucker and Donvan explained, Triplett was forced into a mental institution. Parents felt immense pressure from both the medical community and their social communities to hide these children away in institutions.
After a year of her son begin in an institution, however, Triplett’s mother fought back, taking him back home and using her considerable social clout in the town to place him in a public school.
Triplett’s story ends a happy one, unlike many other autistic people. While his fellow autistic children from the 1943 study lived out their lives in institutions, Triplett was hired at his family’s bank, and became safeguarded by his community at large. The widespread acceptance of Donald in the community, said Donvan and Zucker, was something they would like to see in even more communities around the world.
“If we choose to embrace people who are different—if we make them part of our community as opposed to an outsider—we really can change the world,” said Zucker.
Autism acceptance suffered many more setbacks after that initial diagnosis.
The “refrigerator mother” theory, which posits that the reason children have autism is that their mothers did not love them enough during their first days after birth, was so powerful an idea in the 1960s and 1970s that little other research was done on autism. The devastated mothers were told to feel that it was their fault their children were autistic. It also gave a false hope, Zucker added, of mothers being able to “fix” their children.
After years of work, this idea was expelled. However, parents of autistic children had to contend with other issues, forcing the repeal of a ban on autistic children’s ability to attend public school, along with the major hurdles in autistic research.
Donvan and Zucker stressed that it was parents who spearheaded the developments in the acceptance of and research into autism, raising money and awareness in equal measure.
Zucker and Donvan ended the talk with a question and answer session with the audience.
Donvan urged the audience to give serious consideration toward what happens to autistic children when they grow up. While parents have fought for academic programs and large-scale acceptance into schools for their autistic children, such efforts are primarily geared toward the youth.
As more and more autistic children move into adulthood, how the autistic community will evolve continues to be a growing concern.