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“Massive reset” needed in how we think about autism, book says

September 30, 2015

When Steve Silberman was a reporter covering Silicon Valley in the early 2000s, he noticed what seemed like a common thread in the families of many tech executives: children diagnosed with autism.

He researched the medical literature and spoke with the families, and recognized he was onto something. Documented rates of autism in children were rapidly rising during the time, particularly in the communities of the Silicon Valley elite. Silberman's story for Wired magazine, called "The Geek Syndrome," also considered a genetic predisposition toward autism in people who are drawn to mathematical, methodical work.

After the story ran, an outpouring of responses from parents of autistic children, doctors and other readers left Silberman with a nagging feeling that the story was even bigger than he realized.

Soon, national statistics confirmed the increase in autism diagnoses everywhere. In 2001, one in 150 children was diagnosed with an autism spectrum disorder (ASD); by 2010, the latest reported figures, one in 68 had received a diagnosis, with rates expected to continue rising.

Even before then, advocates and parents had begun to raise the idea that autism could be a modern-day epidemic. The alarm increased awareness and helped spark research aimed at finding a cure.

But in his newly-released book, "NeuroTribes: The Legacy of Autism and the Future of Neurodiversity," Silberman suggests that thinking of autism as an epidemic is a "deal with the devil."

"For decades autism was completely ignored, primarily because it was perceived to be so rare. So when the notion that it was an epidemic came along, that seemed like it was a good deal. Because it was like, that's the way to sound the alarm," Silberman told CBS News.

The problem with that mindset, he said, is that "It renders previous generations of autistic people, who, by the way, are still here and still need help, invisible."

Silberman spent five years gathering reports, studies and archival information on the often obscured and dark history of autism spectrum disorders. He looked at the fraught evolution of autism research and the changes in cultural acceptance over the seven decades since autism received a medical label.

"The more that I looked, the more that I dug into the history, the farther back I kept going to try to figure out when things sort of went wrong," he said.

Autism's hidden history

"NeuroTribes" presents an Edison-Tesla like competition for credit between two of the founding researchers on autism. Hans Asperger, whose name is now associated with what many call "high-functioning" autism, first developed his theories about autism in the 1930s. Asperger believed the condition was not uncommon and could include a range of symptoms on a continuum. But he was caught in Nazi-controlled Austria and therefore written off (unfairly, Silberman says) as a sympathizer or enabler of the cruel Nazi eugenics experiments, which claimed some autistic children in his clinic.

Around the same time, American child psychiatrist Leo Kanner took a very different view of the condition, which he first dubbed "Kanner's syndrome." Kanner focused on more extreme cases and believed the disorder was rare, a product of poor environments and the kind of deviant psychologies that Freud had described. Silberman relates how Kanner was likely influenced by other research in the field, including Asperger's, but never acknowledged their theories.

Mid-twentieth century ideas that autism was caused by "toxic parenting" from unloving "refrigerator mothers" and "hyper-competitive fathers" led to shame, guilt and many abandoned children. Autistic children were often either undiagnosed or, in more pronounced cases, put in institutions where they deteriorated both mentally and physically.

"It was an absolute epic tragedy for generations; parents being told by clinicians, 'I'm sorry, this is a fate worse than death, but you must somehow learn to accept it,'" Silberman said. "Now we understand the full breadth of the spectrum."

It wasn't until the 1980s and 90s that the shift toward diagnosing a wider range of autism spectrum disorders gained momentum. The number of cases grew as more children who would not have fit Kanner's narrow definition of autism were placed along the spectrum. The movie "Rain Man" also helped raise public awareness about the capabilities, and challenges, autistic people face.

Still, there was no consensus on what caused the condition or why it was increasing so rapidly. When Silberman began asking those questions years ago, he heard a litany of different theories that often ended in the collective shoulder shrug, "It's a mystery."

"I felt like, really? We've been looking at autism for more than 70 years, do we really not understand why the numbers went up so much in the 90s?" Silberman said.

Roiling debate about whether trace amounts of mercury in vaccines might be spiking the numbers -- a theory that numerous studies have tested and refuted -- led to what Silberman describes as a highly-concerned and hyper-informed parent group both empowered and too-easily influenced by the nascent, Wild West atmosphere of the early Internet.

The CDC said the rapid increase was likely a product of the change in diagnosis and the expansion of what was considered part of the autism spectrum, in addition to unknown causes that research may yet uncover. More children being born to older parents or born prematurely may have also accounted for some of the rise.

Funding for research increased along with the number of cases. In 2014, the National Institutes of Health (NIH) reported $188 million in government funding for autism research -- up from $51.5 million in 2000. Much of that money goes into the search for a cure, which remains elusive in part because autism is such a genetically diverse set of disorders.

Resetting priorities

Silberman says the pursuit of a cure has diverted much of the attention away from an equally pressing issue: the need to provide services and life skills training to the burgeoning number of older teens and adults who have "aged out" of services and still need assistance to live independently. He says it may be the next civil rights frontier.

"Our society needs a massive reset in terms of its priorities," Silberman said. "One of the main problems facing families now is their children aging out of services. Yet almost all of the funding into research goes into investigating causes."

Though there are now better measurements and diagnoses for children, there are few studies and no concrete statistics to know how many adults are autistic.

"Many things are being ignored by going after the cause of the alleged epidemic that may not even be one," said Silberman. "It is amazing to me, after all this arguing about whether or not vaccines cause autism that we still haven't done a basic prevalence study of autism among adults."

Of the $188 million in NIH funding for autism research last year, Silberman said only about 2 percent went to studies on how to improve services or treatments for autistic adults.

"We know so little about the lives of autistic adults," he said. "For one thing, how many there are, and what helps autistic people succeed and make positive transitions into maturity? We should be looking for that at least as much as we should be looking for more candidate genes."

Autistic people, now less marginalized because autism is more recognized as common, are increasingly advocating for themselves after decades of being treated as incapable. Recognizing autistic adults as a neurologically diverse group who can -- and want to -- contribute to society and live more independently is a growing rallying cry. Hence the name of the book, "NeuroTribes."

But the reality for most families dealing with autism is that there are few services available to help autistic people gain the job and life skills needed in adulthood. Parents often must pay out of pocket for help or even quit their jobs to become, as Silberman puts it, "case workers" advocating for their children, at every age. As a result, many are economically disadvantaged.

"No matter how bright or enthusiastic they are about participating in their communities, they are really struggling to get by with just the basics," Silberman said. "They're surviving at the margins of society."

The book also describes the efforts of the original autism parents' movement, led by Ruth Christ Sullivan, whose son, Joe, was one of the models for Dustin Hoffman's "Rain Man." Beginning in the 1970s and '80s, they worked to build community and provide the kind of resources that could help autistic people thrive as adults over the long term.

"The initial mission of the parents' movement -- the autism parents' movement -- was to change laws and develop resources and build schools so that the world was a better place for autistic kids," said Silberman. "All that energy got diverted into a dead-end argument about vaccines in the 1990s."

Silberman says the model of that parents' movement may be closer to what the future needs.

"I really feel like coming to a place where parents accept the fact that their children are probably going to require some forms of assistance for the rest of their lives, mobilizing our society to offer them that help that they need -- that's when we'll be taking autism seriously."

(Source: cbsnews.com)


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