When psychologist Sally Ozonoff, vice chairman of research at the M.I.N.D. Institute, started the study three years ago, she was hoping to drastically lower the age of diagnosis.
She says she is aiming for a diagnosis age of 12 months. Ozonoff is tracking 200 babies from birth, like Gabe, a normal 12-month-old, being tested for his reactions to a new toy.
“He’s very interested in it. And he communicates that to her with that great look, big eyebrows raising, smile. And then he asks for it without language—he’s ‘Ah, I want that,’” Ozonoff observes.
This behavior, Ozonoff says, is typical of a healthy one-year-old.
But when a boy named Jacob is shown the same toy, he stares at it in silence, never reaching for it, never looking up at the examiner.
“There’s no communication at all with the woman,” Stahl remarks.
“That’s right. It’s as if she isn’t there. Like she’s an object-handing machine,” Ozonoff says.
Jacob was later diagnosed with autism.
Ozonoff also uses high tech methods, like eye tracking. A normal baby looks right in mom’s eyes when she talks to him. But children who are autistic avoid eye contact, looking more at the mouth.
Like most autism researchers, Ozonoff believes children are born with the disorder. She went into her study convinced she would spot the symptoms as early as six months.
But so far, researchers have not been able to see the symptoms at such an early age.
Diagnosing one year olds has proved just as perplexing. Repetitive behavior, like the way Jacob plays with a lid for example, looks like a clear symptom.
“All he’s doing is the picking up and watching it wobble, over and over again,” Ozonoff observes.
But Ozonoff has found that not all one year olds who do this end up with autism. Her “most reliable” test so far is surprisingly simple.
“Starting about six months maybe even a bit earlier, if you say a child’s name, they quickly turn and look at you. And you’ll see this with Gabe,” Ozonoff explains. “Say his name, his head whips around…makes eye contact and smiles.”
When the same experiment was done with Jacob, the result was different.
“The experimenter’s gonna walk behind him. Call his name three times at normal volume,” Ozonoff explains.
Jacob didn’t respond to his name.
But even with this test, only half the children who fail it end up having autism. Haydn was six months old when he was first evaluated and, to Valerie’s relief, he tested on par with children his age.
On one of her visits last year, Ozonoff gave Valerie a copy of her book on Asperger’s syndrome, a high-functioning form of autism.
“So I was reading this book. And through the whole book I just cried because I felt like I was reading this book about Michael,” Valerie remembers.
Michael is her nine-year-old. Through years of speech and occupational therapy, no one had ever suggested that his problems, including his struggle to make and keep friends, could be Asperger’s, until Valerie began asking questions.
“So now you’re basically told you have two sons with autism,” Stahl remarks.
Valerie admits she was reeling. “I was. You feel like you should, you should have pulled your genes out of the gene pool a little sooner you know, at that point,” she says.
And there was still the question of Haydn: his 12-month visit a half-year later was distressing. He wasn’t smiling anymore and he seemed to be regressing into his own world. And then, he stopped responding to his name.
“I knew my son wasn’t hearing me. Everyone around me was saying, ‘Oh, he’s just stubborn. He doesn’t want to listen to you.’ But I knew that wasn’t it,” Valerie recalls. She says she knew it wasn’t a hearing issue.
Despite Haydn’s symptoms, Ozonoff felt it was still too early to tell.
“I would hate to cause the pain…and anguish of having another child diagnosed on the spectrum and then be completely wrong,” she explains.