Social service agencies, public health communities use ACE, but not medical community
Even though the ACE Study is a joint project of public health — the Centers for Disease Control and Prevention — and a large medical institution — the Kaiser Permanente health maintenance organization in San Diego — it is the social service community that has embraced it.
Significant initiatives are under way in New York, Wisconsin, Maine, Arizona and Ohio. But the pioneer is Washington State, which jumped on the ACE Study a decade ago. There, hundreds of people in juvenile justice, education, child protective services, and rehabilitation have already integrated the ACE Study into their programs.
In Kennewick, a crisis nursery teaches severely abused two-year-olds how to calm themselves. In Seattle, drug-addicted parents in a family violence prevention program are “talking ACEs.” In Tacoma, when the juvenile justice department learned that most of its probationers had high ACE scores and were first expelled from school at age 7, they decided to focus on reducing the escalation of trauma in their teenagers’ lives. The additional trauma occurs when peers reject them, they fail in school, and they engage in risky behaviors.
“While we can’t undo the ACE that a child has already experienced, we can prevent the child being treated badly because of his/her normal response to trauma,” said Laura Porter, director of the Washington Family Policy Council, a state-funded organization of citizen-run local public health and safety networks.
She says the ACE study “invites people to rethink their mental models on how to solve child and family problems, but also social problems like child abuse, domestic violence, substance abuse.”
Krista Goldstine-Cole, the council’s educational consultant, says the combination of the ACE Study and the neurobiological research that shows how trauma affects the function and development of children’s brains and nervous system was a powerful wake-up call.
“A lot of what we take to be willful disobedience is actually patterns of biological traits that have been woven into our being by our earlier experiences,” said Goldstine-Cole. “There are ways to build skills out of those biological realities, but only at the moment that we accept that’s it’s woven into our biology. That is monumental and when we collectively really get that as a society, a lot of things will change across many of our systems.”
Parent Trust for Washington Children uses the ACE Study. Parent Trust oversees the statewide Families in Recovery Network, which includes offering parent education and support to Genesis House, a lock-down facility where drug-addicted parents live, sometimes with their children, for up to a year. Inside, educators from Parent Trust work with mothers and fathers to prevent them from passing on to their own children the trauma that they suffered when they were kids. Seven years ago, its director, Jack Edgerton heard Dr. Vincent Felitti, one of the ACE Study co-founders, speak at a Family Policy Council conference.
“Like many in the crowd, we were blown away by the amazing correlation between adverse childhood experiences and problems later in life,” said Edgerton. “What we wanted to do was to be able to help folks recognize the ACEs in their lives, become protected from those ACEs, so their children would not then inherit the ACEs that their parents had.”
Edgerton started asking parents at Genesis House to take the survey. It got them talking ACEs.
“I have a score of six and my son only has one,” said a 22-year-old mother whose 2-year-old son lived with her at Genesis House. When she learned about the ACE Study, something clicked. It was tangible, something on paper that could describe her history in a simple number.
“My dad is a recovering heroin addict,” she said, “and then it falls onto me. So being conscious now helps you realize what situations you don’t want to stick your kids in, to create another cycle which will then end them up right where we are 22 years from now.” She says her focus is to keep her son’s ACE score as low as possible.
In Kennewick, Safe Harbor Crisis Nursery has a wide front porch and a garden full of butterfly bushes. It looks more like grandma’s house than a place where tiny children recover from abuse or neglect.
Children ages 2 to 6 — many referred by the county’s Child Protective Services — spend a few hours a day here for six months. The idea is to teach these little kids how to calm themselves through simple child’s play, like blowing bubbles.
“The very act, physical act of expelling your breath like that, calms your body,” said Sue Delucchi, a clinical specialist in childhood trauma and loss. “Children that have had severe trauma tend to have elevated heart rates.”
When Delucchi became executive director of the crisis nursery eleven years ago, it provided just the basics — food, clothing, and a safe place to play. Then she heard Dr. Felitti speak about the ACE study, and decided to focus her program entirely on ways to counter the children’s trauma.
“It was to make sure the long-term consequences that we had learned from Dr. Felitti didn’t happen to all those little kids that we were seeing,” said Delucchi. “I don’t want them to have heart disease. I don’t want them to have addictive behaviors.”
So she created an environment where children could learn to soothe themselves. They blow bubbles. They can crawl into cozy hideaways when they feel scared and listen to comforting recorded sounds of their choosing.
The approach is working. In the past it was common for these children to be returned to Child Protective Services by foster parents who couldn’t cope with their uncontrollable behavior. Last year, none of the children from the crisis nursery was returned to Child Protective Services. The curriculum she developed will be ready for other agencies to adopt next year.
Delucchi is pleased that her program appears to be helping children. But she’s frustrated, because not enough people seem to understand the enormity of the ACE Study.
“I’ve tried to talk with medical folks about this study,” said Delucchi, “and I’m met with a kind of indifference, a kind of disbelief. We know that behavior shapes all of us. And instead of becoming good behavior detectives, we think more about giving medication to fix the symptoms.”
“The ACE study has attracted intense intellectual interest and to date, essentially no medical engagement,” says Dr. Vincent Felitti, who recently did a day-long workshop in Salina, Kan., with a sell-out crowd of 140 social workers.
Dr. Eric Blau, a Kaiser physician who worked with Felitti, provides some insight. “When the study was first being done,” says Blau, I was shocked and didn’t believe it. It goes against everything we’re taught about why people get sick later in life. That’s related to genetics or things that happen to you as an adult.”
And though he now calls the study groundbreaking, Blau explains why the medical community just doesn’t know what to do with it.
“I can give you the cynic’s point of view. There’s no cure, so why are you bothering to ask patients about their childhoods? If they’re smoking because they were abused at age 5, what good is it to know? It’s better just to deal with cigarette addiction. And another view is that a lot of people just don’t have time in their offices to deal with this.”
Even though the ACE Study offers awareness, but no treatment, Blau still uses it in his practice.
“I ask them questions about their lives,” says Blau. “If they weigh 100 pounds more than they should, I don’t think it’s their genetics. I ask them when they got fat. People get fat because of things that happen to them as children. If you ask about this, then you can get to the root of the problem. We may not have a good therapy, but at least we can identify the problem. Sometimes it helps them, sometimes it doesn’t.”
The public health community, however, is beginning to embrace the study. This year, six states — Arkansas, California, Louisiana, South Carolina, Montana, New Mexico and Washington — are including the ACE questionnaire in their Behavioral Risk Factor Surveillance System. Every state has one, and uses it to determine its population’s health so that it can put resources where they are needed to prevent illness, such as heart disease and lung cancer.
“For the first time, this will give us some population based data,” said Dr. David Brown, a CDC epidemiologist. “I fully expect data that comes out of states is going to support what we’ve seen in Kaiser data.”
He likens the slow acceptance of the ACE Study to another large public health issue — the dangers of high blood pressure. The first data about high blood cholesterol was gathered nationally in the late 1980s. Then pharmaceutical companies began doing clinical trials with cholesterol-reducing drugs. In the mid- to late-1990s, states began starting programs in heart disease and stroke. Between 2000 and 2005, all states offered programs. All of that came out of the Framingham Heart Study in Massachusetts, which began with a few thousand people in the 1950s. “That’s a long process,” says Brown. “That’s kind of where the ACE Study is at as well.”