A parent survey released last November suggests 1 in 45 children in the U.S. falls somewhere on the autism disorder spectrum.
The official prevalence rate, according to the U.S. Centers for Disease Control and Prevention, is 1 in 68.
Whatever the number — which has been rising — it includes people with a wide range of developmental disabilities and significant social, communication and behavioral challenges — from a child who can’t speak at all to eccentric, antisocial geniuses, such as the writer and animal scientist Temple Grandin.
Some have suggested there is an autism epidemic, but that claim is in dispute, in part because the definition of autism has changed over time.
The disorder is genetic, although other factors may be involved. Statistics show that people diagnosed with autism are predominately male and non-Hispanic whites. Children from families with a higher socioeconomic status are more likely to be diagnosed than children of low-income parents.
The disorder has received a lot of attention in recent years as parents have fought for the rights of their autistic children to be schooled. The disorder also got a lot of press when a British gastroenterologist connected autism to the MMR vaccine in an article in The Lancet in 1998. The article was later retracted and the physician sanctioned.
Now come a couple of new books on autism. The authors of one, In a Different Key: The Story of Autism, will be in Santa Fe for an event Monday at the Unitarian Universalist Congregation. John Donvan is a correspondent for ABC News, and Caren Zucker is a journalist and former producer for ABC who is the producer and co-writer of the PBS series Autism Now. Both have relatives with autism.
Zucker said the goal of the book is to show what happens when the community embraces people who are different.
Rupert Isaacson , the author of another autism-related book, will be signing copies of The Long Ride Home on Feb. 29 at the Jean Cocteau Cinema following screenings of The Horse Boy, a documentary about Isaacson’s journey to Mongolia with his autistic son, who had started to speak after being placed on the back of a horse.
In a Different Key, which has received significant attention in the U.S. and abroad, tells about the rise of the disability rights movement and the neurodiversity movement. It describes the era of institutionalizing children — and worse practices, such as treating kids with LSD and electric shock. The seed for the book was the authors’ story in 2010 in The Atlantic magazine, titled “Autism’s First Child.”
The article was about Donald Triplett of Forest, Miss., the first child diagnosed with autism, who is now in his 80s. It tells of his parents’ efforts to find out what was wrong with their child, who showed little interest in them or the outside world but could build a tower of colored blocks, have it knocked over and then rebuild it exactly as it had been.
Triplett’s parents sought help from many doctors and at one time even institutionalized their son. He was finally given a diagnosis of “autistic disturbances of affective contact” by Leo Kanner, a leading child psychiatrist at Johns Hopkins Hospital in 1942. Kanner published his findings the following year.
Despite his diagnosis, Triplett enjoyed the support of his Mississippi community for his whole life, eventually learned to drive and once traveled by himself to Egypt.
Zucker said in an interview last week that when she and Donvan first met Triplett in Mississippi, “We were basically told, ‘If you mess with him, we’ll know where to find you.’ That’s how protective this community was.”
She said that illustrates the goal of the book.
More research is needed to develop new treatments, Zucker said, but the most important thing now is services, particularly for children who are now turning 21. “We’ve spent decades working with these children so they can now go to school. Society knows what the word ‘autism’ means. But at 21, they sort of fall off the cliff. Everything stops,” she said.
Her own child is a case in point. Zucker’s son is now 21 and is in a two-year program in Phoenix, where he is learning things like employment skills. He graduated from high school, with support, but will be returning home in June.
“I need to get him home, but I don’t have a plan, and I’ve had a plan his whole life. It’s very scary,” Zucker said.
Many treatments for autism have failed over the years, and there is now a lot of argument about whether all people with the disorder should receive therapy.
One type of therapy teaches people with autism everything from how to use a toothbrush to how to look someone in the eye. Zucker said it can benefit everyone, and “if someone is banging their head against the wall and you can teach them to stop, why wouldn’t you?”
It’s not always effective, she said, but “it’s been scientifically tested, and we can see the results.”
Besides telling compelling stories, the book breaks some new ground with a disclosure that Austrian pediatrician Hans Asperger, who gave his name to a condition that is now on the autism spectrum, collaborated with the Nazis. He coined the term “autistic” in the 1930s. Zucker and Donovan report that documents unearthed by an Austrian historian purport to show that Asperger, long honored as a benevolent doctor and humanitarian, complied with Nazi policies and knowingly sent disabled children to their premature deaths at Spiegelgrund, a children’s clinic in Vienna, where they were poisoned with phenobarbital.
Contact Anne Constable at 986-3022 or email@example.com.
If you go
A talk with authors of In a Different Key: The Story of Autism
When: 7 p.m. Monday, Feb. 22
Where: Unitarian Universalist Congregation, 107 W. Barcelona Road
Screenings of The Horse Boy and book signing
When: 6:30 and 8:30 p.m. Monday, Feb. 29
Where: Jean Cocteau Cinema, 418 Montezuma Ave.
Cost: Suggested donation of $10; event benefits the Taos Ski Valley Adaptive Snow-Sports Program