STEP forum moderator Dr. Susan Swedo of NIMH (second from l) is joined by speakers (from l) Dr. Roy Richard Grinker, Dr. Rebecca Landa and Dr. Ami Klin.
But to the forum’s speakers, these rates are actually a sign of a greater understanding
and awareness of the disorder. Grinker, who is both a medical anthropologist and a father of a daughter with autism, said that what many see as a “crisis” in autism is in fact an achievement. More children are being diagnosed with autism today, he explained, because more people understand what it is and are getting kids the treatment they need at a younger age. That, he said, is a positive change.
The discussion was part of a larger Science for All presentation that provided an overview of what is known about autism. Dr. Ami Klin, director of the Yale Child Study Center’s Autism Program at University School of Medicine, and Dr. Rebecca Landa
of the Kennedy
explained how autism is diagnosed,
assessed and treated and detailed research conducted
in their clinical programs. Grinker
focused on his personal experience with autism, as an anthropologist and as a parent.
Klin said that as early as 1943, Leo Kanner, often called the “father of child psychiatry,” described children with a seeming inability to relate to others. Today, Klin explained, impairments
in social interaction are still seen as core diagnostic features of autism, along with “the universal difficulties in reciprocal communication.”
While in typical development, children are predisposed
to engage with people, this predisposition
is absent or impaired in children with autism. They have a “derailment of a very key aspect of life very early on,” Klin said. A goal of current research is to be able to identify where this divergence in the pathway—between developing
expertise about the social world and about the physical world—occurs, as early as possible.
To better understand just how altered social engagement might affect development, Klin and his colleagues use eye-tracking technology that allows them to see exactly where a person
with autism looks. He showed a scene from the film Who’s Afraid of Virginia Woolf. A typical
viewer, he demonstrated, focuses on the frightened eyes of the central actor in the scene, while a person with autism will focus on the mouth of the person speaking. The same is true of toddlers as young as 15 months with autism: when faced with a caregiver, they will focus on the mouth, not the eyes. From these findings, researchers have learned that the less children look at eyes—the centers of emotion—the stronger their disability. It also gives researchers
hope, Klin said, “because maybe we can detect autism before it even emerges.”
A major challenge to researchers is the “spectrum”
factor of the disorder: there is a great range in the way autism affects people. This means they need to use what Klin called “a large bag of tricks” to accurately assess and work with children with autism. Landa outlined a variety of intervention options—from behavioral and educational to pharmacologic treatment—then showed several video examples of interventions used in her program.
However, another challenge is the perception of autism around the world; this is where Grinker
went into detail. As an anthropologist, he has traveled to many countries, studying how different societies classify, identify and treat autism and looking at the connections between culture and illness. He found that autism has become “more and more a part of everyday language
But change, he explained, often comes slowly. When his daughter, Isabel, was diagnosed with autism in 1994, he and his wife talked to a psychoanalyst
who barraged his wife with questions
about her pregnancy and childrearing. “This person was clearly placing blame on my wife in a very roundabout way,” Grinker said.
The “refrigerator mother” idea, he explained, is still alive and well. In France, “the paradigm very much at play right now is that if the child is autistic, you treat the mother because it’s not the child’s problem.” In South Korea, where Grinker and colleagues are conducting an epidemiological
study, he was originally told he wouldn’t find autism. Instead, they referred to something called “reactive attachment disorder,” which also blames a child’s working mother.
In many places “there is externalization of blame going on,” including the vaccine issue in the U.S. “Scientific studies have shown that neither vaccines
nor anything contained in vaccines have been related to autism or autism prevalence,” Grinker said. Yet a large number of advocates, emboldened by information they find online, remain convinced this problem exists.
Which brings us back to fears of an epidemic.
By using a well-known graph from the state of California showing improved delivery of autism-related services, Grinker showed how the data have been improperly represented to suggest an increase in the incidence of autism. The chart, he said, “looks frightening because…when we see a line that goes from bottom to top we get scared.” However, he said this is in fact a “fantastic” image for showing how misleading
a graph can be. The graph looks like an increase in rates over time, but it is really just a snapshot of the ages of children who are being given services in California’s regional centers under the classification of autism. If you take the data and make a different chart, looking instead at the ages at which people are receiving
treatment, it’s a much more positive statement.
It shows early intervention is working and that “we’re getting kids into the system [at a] younger [age].”
Autism, in the past, was categorized differently,
he explained; it seems to him we’re just now starting “to get it right.” He’s also seen a growing awareness in our society through his daughter.
For example, because of her love of animals, Isabel recently expressed interest in volunteering
at the National Zoo. Grinker has written
a book on his experiences with his daughter
called Unstrange Minds: Remapping the World of Autism, but was still reluctant to call the zoo and ask about Isabel volunteering there. It turned out the zoo already employed kids with autism and had no problem with it. “That wouldn’t have happened 10 years ago,” Grinker noted.
He closed his talk by reading from his book, sharing an experience he had with Isabel when she became fascinated with the painter Claude Monet’s garden in Giverny, France, leading to a family trip there and French lessons when she returned home.
Grinker knows there are “many frightened parents
out there,” but he’s seen the change in autism awareness for Isabel as well as for kids throughout the world. “When she entered the school system, she was seen as strange,” he said. “But today, the children she knows…they know what autism is. You take a child and introduce them to another child and just say they’re different,
they’re not going to be good to them. But if you tell them this child has autism—which so many students know about because they’ve heard about it or because ‘America’s Next Top Model’ had an autistic contestant—they’re going to embrace that child.
“The truth is, the more people understand autism, the more people are willing to embrace children with autism,” Grinker said.
He said his daughter has taught him “the unexpected,
even the beautiful, can emerge from something initially seen as undesirable.” He’s seen that autism can contain something wonderful
“inside a person that’s not to be recovered
or extracted, but something of its own brilliance
and with its own truth.”