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Jane Ellen Stevens

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The Adverse Childhood Experiences Study -- the Largest Public Health Study You Never Heard Of

Posted: 10/08/2012 8:53 am

"Adverse childhood experiences" has become a buzzword in social services, public health, education, juvenile justice, mental health, pediatrics, criminal justice, medical research and even business. The ACE Study - the CDC's Adverse Childhood Experiences Study -- has recently been featured in the New York Times, This American Life, and Salon.com. Many people say that just as you should what your cholesterol score is, so you should know your ACE score. But what is this study? And do you know your own ACE score?

The ACE Study - probably the most important public health study you never heard of - emerged from an obesity clinic on a quiet street in San Diego.

It was 1985, and Dr. Vincent Felitti was mystified. The physician, chief of Kaiser Permanente's revolutionary Department of Preventive Medicine in San Diego, CA, couldn't figure out why, each year for the last five years, more than half of the people in his obesity clinic dropped out. Although people who wanted to shed as little as 30 pounds could participate, the clinic was designed for people who were 100 to 600 pounds overweight.

Felitti cut an imposing, yet dashing, figure. Tall, straight-backed, not a silver hair out of place, penetrating eyes, he was a doctor whom patients trusted implicitly, spoke of reverentially and rarely called by his first name. The preventive medicine department he created had become an international beacon for efficient and compassionate care. Every year, more than 50,000 people were screened for diseases that tests and machines could pick up before symptoms appeared. It was the largest medical evaluation site in the world. It was reducing health care costs before reducing health care costs was cool.

But the 50-percent dropout rate in the obesity clinic that Felitti started in 1980 was driving him crazy. A cursory review of all the dropouts' records astonished him -- they'd all been losing weight when they left the program, not gaining. That made no sense whatsoever. Why would people who were 300 pounds overweight lose 100 pounds, and then drop out when they were on a roll?

The situation "was ruining my attempts to build a successful program," he recalls, and in typical Type-A fashion, he was determined to find out why.

The mystery turned into a 25-year quest involving researchers from the Centers for Disease Control and Prevention and more than 17,000 members of Kaiser Permanente's San Diego care program. It would reveal that adverse experiences in childhood were very common, even in the white middle-class, and that these experiences are linked to every major chronic illness and social problem that the United States grapples with - and spends billions of dollars on.

In 1985, however, all that Felitti knew was that the obesity clinic had a serious problem. He decided to dig deep into the dropouts' medical records. This revealed a couple of surprises: All the dropouts had been born at a normal weight. They didn't gain weight slowly over several years.
"I had assumed that people who were 400, 500, 600 pounds would be getting heavier and heavier year after year. In 2,000 people, I did not see it once," says Felitti. When they gained weight, it was abrupt and then they stabilized. If they lost weight, they regained all of it or more over a very short time.

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But this knowledge brought him no closer to solving the mystery. So, he decided to do face-to-face interviews with a couple hundred of the dropouts. He used a standard set of questions for everyone. For weeks, nothing unusual came of the inquiries. No revelations. No clues.

The turning point in Felitti's quest came by accident. The physician was running through yet another series of questions with yet another obesity program patient: How much did you weigh when you were born? How much did you weigh when you started first grade? How much did you weigh when you entered high school? How old were you when you became sexually active? How old were you when you married?

"I misspoke," he recalls, probably out of discomfort in asking about when she became sexually active. Although physicians are given plenty of training in examining body parts without hesitation, he says, they're given little support in talking about what patients do with some of those body parts. "Instead of asking, "How old were you when you were first sexually active," I asked, "How much did you weigh when you were first sexually active?' The patient, a woman, answered, 'Forty pounds.'"

He didn't understand what he was hearing. He misspoke the question again. She gave the same answer, burst into tears and added, "It was when I was four years old, with my father."

He suddenly realized what he had asked.

"I remembered thinking, 'This is only the second incest case I've had in 23 years of practice'," Felitti recalls. "I didn't know what to do with the information. About 10 days later, I ran into the same thing. It was very disturbing. Every other person was providing information about childhood sexual abuse. I thought, 'This can't be true. People would know if that were true. Someone would have told me in medical school.' "

Worried that he was injecting some unconscious bias into the questioning, he asked five of his colleagues to interview the next 100 patients in the weight program. "They turned up the same things," he says.

Of the 286 people whom Felitti and his colleagues interviewed, most had been sexually abused as children. As startling as this was, it turned out to be less significant than another piece of the puzzle that dropped into place during an interview with a woman who had been raped when she was 23 years old. In the year after the attack, she told Felitti that she'd gained 105 pounds.

"As she was thanking me for asking the question," says Felitti, "she looks down at the carpet, and mutters, 'Overweight is overlooked, and that's the way I need to be.'"

During that encounter, a realization struck Felitti. It's a significant detail that many physicians, psychologists, public health experts and policymakers haven't yet grasped: The obese people that Felitti was interviewing were 100, 200, 300, 400 pounds overweight, but they didn't see their weight as a problem. To them, eating was a solution. (There's a reason an IV drug user calls a dose a "fix".)

One way it was a solution is that it made them feel better. Eating soothed their anxiety, fear, anger or depression - it worked like alcohol or tobacco or methamphetamines. Not eating increased their anxiety, depression, and fear to levels that were intolerable.

The other way it helped was that, for many people, just being obese solved a problem. In the case of the woman who'd been raped, she felt as if she were invisible to men. In the case of a man who'd been beaten up when he was a skinny kid, being fat kept him safe, because when he gained hundreds of pounds, nobody bothered him. In the case of another woman -- whose father told her while he was raping her when she was 7 years old that the only reason he wasn't doing the same to her 9-year-old sister was because she was fat -- being obese protected her. Losing weight increased their anxiety, depression, and fear to levels that were intolerable.

For some people, both motivations were in play.

Felitti didn't know this at the time, but this was the more important result -- the mind-shift, the new meme that would begin spreading far beyond a weight clinic in San Diego. It would provide more understanding about the lives of hundreds of millions of people around the world who use biochemical coping methods - such as alcohol, marijuana, food, sex, tobacco, violence, work, methamphetamine, thrill sports - to escape intense fear, anxiety, depression, anger.

Public health experts, social service workers, educators, therapists and policy makers commonly regard addiction as a problem. Some, however, are beginning to grasp that turning to drugs is a normal response to serious childhood trauma, and that telling people who smoke or overeat or overwork that these are bad for them and that they should stop doesn't sway or convince them when those approaches provide a temporary, but gratifying solution.

Ella Herman was one of the people who participated in the obesity clinic, but had dropped out because any weight she lost, she regained. Herman owned a successful childcare center in San Diego. Herman said she was sexually abused by two uncles and a school bus driver; the first time occurred when she was four years old. She married a man who abused her repeatedly and tried to kill her. With the help of her family, she fled with her children to San Diego, where she later remarried.

"I imagine I've lost 100 pounds about six times," she recalled. "And gained it back." Every time she lost weight and a man commented on her beauty, she became terrified and began eating. But she never understood the connection until she attended a meeting at which Felitti talked about what he'd learned from patients. At this time, Herman was just over five feet tall and weighed nearly 300 pounds.

"He had a room full of people," she said. "The more he talked the more I cried, because he was touching every aspect of my life. Somebody in the world understands, I thought."

Herman later sent a letter to Felitti. "I want to thank you for caring enough about people to read all those charts and finding out what happens to all of us who are molested, raped and abused in childhood," she wrote. "...I suffered for years. The pain became so great I was thinking of jumping off the San Diego Bay Bridge....How many people may have taken their life because they had no program to turn to? How many lives can be saved by this program?"

Part Two: What do you do when you've got something important to tell the world, but the world thinks it's stupid?

For Part 2, go here; and for Part 3 go here.

Jane Ellen Stevens is writing a book about ACE concepts and how organizations, agencies, businesses, communities and individuals are implementing them.

 

Follow Jane Ellen Stevens on Twitter: www.twitter.com/@jstevens

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