The Adverse Childhood Experiences Study -- the largest public health study you never heard of
October 04, 2012
Mentions of the ACE Study -- the CDC's Adverse Childhood Experiences Study -- have recently appeared in the New York Times, This American Life, and Salon.com. In the last year, it's become a buzzword in social services, public health, education, juvenile justice, mental health, pediatrics, criminal justice and even business. The ACE Study is having such an impact on how people think about health that many people recommend, just as everyone should be aware of her or his cholesterol score, everyone should know her or his ACE score.
The ACE Study -- probably the most important public health study you never heard of -- had its origins in 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.
But in 1985, 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.
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, 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 overweight, but they didn't see their weight as a problem. To them, eating was a fix, 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 a lot of weight, 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, methamphetamines, 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 register 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?"
What do you do when you've got something important to tell the world, but the world thinks it's stupid?
So, if you were Vincent Felitti, whom would you pick as your first audience to reveal your stunning findings? A group relatively informed about obesity that would greet the new information with extreme interest, praise and applause? Natch. So, in 1990,
Felitti flew to Atlanta to give a speech to the members -- many of them psychologists and psychiatrists -- of the North American Association for the Study of Obesity. The audience listened quietly and politely. When he finished, one of the experts stood
up and blasted him. "He told me I was na~ve to believe my patients, that it was commonly understood by those more familiar with such matters that these patient statements were fabrications to provide a cover explanation for failed lives!"
At dinner, Dr. David Williamson, an epidemiologist from the U.S. Centers for Disease Control and Prevention, sat next to the perplexed Felitti. Williamson was intrigued. He leaned over and "told me that people could always find fault with a study of a
couple of hundred people," says Felitti, "but not if there were thousands, and from a general population, not a subset like an obesity program. I turned to him and said, 'That's not a problem.' "
Williamson invited Felitti to meet with a small group of researchers at the Centers for Disease Control. Dr. Robert Anda, a medical epidemiologist was among them. If Felitti is the model for a TV show featuring a wise and stately chief physician who sits
straight, stands straight, and keeps his personal feelings in check, Anda would be the dashing, young, brilliant researcher who wears his tie askew, slumps in chairs, laughs easily, loves to joke around, and puts his heart on his sleeve for all to see.
Anda began his career as a physician, but became intrigued with epidemiology and public health. When he met Felitti, he had been studying how depression and feelings of hopelessness affect coronary heart disease. He noticed that depression and hopelessness
weren't random. "I became interested in going deeper, because I thought that there must be something beneath the behaviors that were generating them," says Anda.
Kaiser Permanente in San Diego was a perfect place to do a mega-study. More than 50,000 members came through the department each year, for a comprehensive medical evaluation. Every person who came through the Department of Preventive Medicine filled out
a detailed biopsychosocial (biomedical, psychological, social) medical questionnaire prior to undergoing a complete physical examination and extensive laboratory tests. It would be easy to add another set of questions. In two waves, Felitti and Anda
asked 26,000 people who came through the department "if they would be interested in helping us understand how childhood events might affect adult health," says Felitti. Of those, 17,421 agreed.
Before they added the new trauma-oriented questions, Anda spent a year pouring through the research literature to learn about childhood trauma, and focused on the eight major types that patients had mentioned so often in Felitti's original study and whose
individual consequences had been studied by other researchers. These eight included three types of abuse -- sexual, verbal and physical. And five types of family dysfunction -- a parent who's mentally ill or alcoholic, a mother who's a domestic violence
victim, a family member who's been incarcerated, a loss of a parent through divorce or abandonment. He later added emotional and physical neglect, for a total of 10 types of adverse childhood experiences, or ACEs.
The initial surveys began in 1995 and continued through 1997, with the participants followed subsequently for more than fifteen years. "Everything we've published comes from that baseline survey of 17,421 people," says Anda, as well as what was learned
by following those people for so long.
When the first results of the survey were due to come in, Anda was at home in Atlanta. Late in the evening, he logged into his computer to look at the findings. He was stunned. "I wept," he says. "I saw how much people had suffered and I wept."
This was the first time that researchers had looked at the effects of several types of trauma, rather than the consequences of just one. What the data revealed was mind-boggling.
The first shocker: There was a direct link between childhood trauma and adult onset of chronic disease, as well as mental illness, doing time in prison, and work issues, such as absenteeism.
The second shocker: About two-thirds of the adults in the study had experienced one or more types of adverse childhood experiences. Of those, 87 percent had experienced 2 or more types. This showed that people who had an alcoholic father,
for example, were likely to have also experienced physical abuse or verbal abuse. In other words, ACEs usually didn't happen in isolation.
The third shocker: More adverse childhood experiences resulted in a higher risk of medical, mental and social problems as an adult.
To explain this, Anda and Felitti developed a scoring system for ACEs. Each type of adverse childhood experience counted as one point. If a person had none of the events in her or his background,
the ACE score was zero. If someone was verbally abused thousands of times during his or her childhood, but no other types of childhood trauma occurred, this counted as one point in the ACE score. If a person experienced verbal abuse,
lived with a mentally ill mother and an alcoholic father, his ACE score was three.
Things start getting serious around an ACE score of 4. Compared with people with zero ACEs, those with four categories of ACEs had a 240 percent greater risk of hepatitis, were 390 percent more likely to have chronic obstructive pulmonary disease (emphysema
or chronic bronchitis), and a 240 percent higher risk of a sexually-transmitted disease.
They were twice as likely to be smokers, 12 times more likely to have attempted suicide, seven times more likely to be alcoholic, and 10 times more likely to have injected street drugs.
People with high ACE scores are more likely to be violent, to have more marriages, more broken bones, more drug prescriptions, more depression, more auto-immune diseases, and more work absences.
"Some of the increases are enormous and are of a size that you rarely ever see in health studies or epidemiological studies. It changed my thinking dramatically," says Anda.
One in six people had an ACE score of 4 or more, and one in nine had an ACE score of 5 or more. This means that every physician probably sees several high ACE score patients every day, notes Felitti. "Typically, they are the most difficult, though the
underpinnings will rarely be recognized."
The kicker was this: The ACE Study participants were average Americans. Eighty percent were white (including Latino), 10 percent black and 10 percent Asian. They were middle-class, middle-aged, and 74 percent were college-educated. Since they were members
of Kaiser Permanente, they all had jobs and great health care. Their average age was 57.
As Anda has said: "It's not just 'them'. It's us."
Changing the landscape of understanding human development
In the last 14 years, Anda, Felitti and other CDC researchers have published more than 60 papers in prestigious peer-reviewed journals, including the Journal of the American Medical Association and the American Journal of Preventive Medicine. Other researchers
have referenced their work more than 1,500 times. Anda and Felitti have flown around the U.S., Canada and Europe to give hundreds of speeches.
Their inquiry "changed the landscape," says Dr. Frank Putnam, director of the Mayerson Center for Safe and Healthy Children at Cincinnati Children's Hospital
Medical Center and professor at the University of Cincinnati Department of Pediatrics. "It changed the landscape because of the pervasiveness of ACEs in the huge number of public health problems, expensive public health problems --- depression, substance
abuse, STDs, cancer, heart disease, chronic lung disease, diabetes."
The ACE Study became even more significant with the publication of parallel research that provided the link between why something that happened to you when you were a kid could land you in the hospital at age 50. The stress of severe and chronic childhood
trauma -- such as being regularly hit, constantly belittled and berated, watching your father often hit your mother -- releases hormones that physically damage a child's developing brain.
Flight, fight or freeze hormones work really well to help us accelerate when we're being chased by a vicious dog with big teeth, fight when we're cornered, or turn to stone and stop breathing to escape detection by a predator. But they become toxic when
they're turned on for too long.
This was determined by a group of neuroscientists and pediatricians, including neuroscientist Martin Teicher and pediatrician Jack Shonkoff,
both at Harvard University, neuroscientist Bruce McEwen at Rockefeller University, and pediatrician Bruce Perry at the Child Trauma Academy.
As San Francisco pediatrician Nadine Burke Harris recently explained to host Ira Glass on the radio program, "This American Life", if you're in a forest and see
a bear, a very efficient fight or flight system instantly floods your body with adrenaline and cortisol and shuts off the thinking portion of your brain that would stop to consider other options. This is very helpful if you're in a forest and you need
to run from a bear. "The problem is when that bear comes home from the bar every night," she said.
If a bear threatens a child every single day, his emergency response system is activated over and over and over again. He's always ready to fight or flee from the bear, but the part of his brain -- the prefrontal cortex -- that's called upon to diagram
a sentence or do math becomes stunted, because, in our brains, emergencies -- such as fleeing bears -- take precedence over doing math.
For Harris' patients who had four or more categories of adverse childhood experiences "their odds of having learning or behavior problems in school were 32 times as high as kids who had no adverse childhood experiences," she told Glass.
Together, the two discoveries -- the ACE epidemiology and the brain research -- reveal a story too compelling to ignore:
Children with toxic stress live much of their lives in fight, flight or fright (freeze) mode. They respond to the world as a place of constant danger. With their brains overloaded with stress hormones and unable to function appropriately, they can't focus
on learning. They fall behind in school or fail to develop healthy relationships with peers or create problems with teachers and principals because they are unable to trust adults. Some kids do all three. With despair, guilt and frustration pecking
away at their psyches, they often find solace in food, alcohol, tobacco, methamphetamines, inappropriate sex, high-risk sports, and/or work and over-achievement. They don't regard these coping methods as problems. Consciously or unconsciously, they
use them as solutions to escape from depression, anxiety, anger, fear and shame.
What all this means, says Anda is that we need to prevent adverse childhood experiences and, at the same time, change our systems -- educational, criminal justice, healthcare, mental health, public health, workplace -- so that we don't further traumatize
someone who's already traumatized. You can't do one or the other and hope to make any progress.
"Dr. Putnam is right -- ACEs changed the landscape," Anda says. "Or perhaps the many publications from the ACE Study opened our eyes to see the truth of the landscape. ACEs create a "chronic public health disaster"that until recently has
been hidden by our limited vision. Now we see that the biologic impacts of ACEs transcend the traditional boundaries of our siloed health and human service systems. Children affected by ACEs appear in all human service systems throughout the lifespan
-- childhood, adolescence, and adulthood -- as clients with behavioral, learning, social, criminal, and chronic health problems."
But our society has tended to treat the abuse, maltreatment, violence and chaotic experiences of our children as an oddity instead of commonplace, as the ACE Study revealed, notes Anda. And our society believes that these experiences are adequately dealt
with by emergency response systems such as child protective services, criminal justice, foster care, and alternative schools. "These services are needed and are worthy of support - but they are a dressing on a greater wound," he says.
"A hard look at the public health disaster calls for the both the prevention and treatment ACEs," he continues. "This will require integration of educational, criminal justice, healthcare, mental health, public health, and corporate systems that involves
sharing of knowledge and resources that will replace traditional fragmented approaches to burden of adverse childhood experiences in our society."
As Williamson, the epidemiologist who introduced Felitti and Anda, and also worked on the ACE Study, says: "It's not just a social worker's problem. It's not just a psychologist's problem. It's not just a pediatrician's problem. It's not just a juvenile
court judge's problem." In other words, this is everybody's problem.
According to a CDC study released earlier this year, just one year of confirmed cases of child maltreatment costs $124 billion over the lifetime of the
traumatized children. The researchers based their calculations on only confirmed cases of physical, sexual and verbal abuse and neglect, which child maltreatment experts say is a small percentage of what actually occurs.
The breakdown per child is:
• $32,648 in childhood health care costs
• $10,530 in adult medical costs
• $144,360 in productivity losses
• $7,728 in child welfare costs
• $6,747 in criminal justice costs
• $7,999 in special education costs
You'd think the overwhelming amount of money spent on the fallout of adverse childhood experiences would have inspired the medical community, the public health community and federal, state and local governments to integrate this knowledge and fund programs
that have been proven to prevent ACEs. But adoption of concepts from the ACE Study and the brain research has been remarkably slow and uneven.
On the federal level, the Substance Abuse and Mental Health Services Administration (SAMHSA) -- probably the largest federal agency you never heard of -- launched the National Child Traumatic Stress Network in
2001, and the National Center for Trauma-Informed Care (NCTIC) in 2005. Much of the work focused on stress from individual traumatic events, or individual types of child abuse;
only recently has there been a focus on dysfunctional families or changing systems that engage those families to become trauma-informed, i.e., not further traumatizing already traumatized people, as so many of our systems do.
Until the last 10 months, the medical community practically ignored the ACE Study. Just last December, the American Academy of Pediatrics issued a policy statement recommended
that its members look for toxic stress in their patients. Except with local exceptions, the public health community has not embraced it. In fact, the CDC -- the one agency you might think would use its own research to reorganize how it approaches prevention
of alcohol, obesity, sexually transmitted diseases and smoking -- has whittled down funding for the ACE Study to practically nothing, and nobody's working on it full time.
However, on a local and state level, there's been considerably more action. Washington was the first state to embrace the implications of the ACE Study and the research on children's developing brains. Ten years ago, it set up the Family Policy Council and a statewide community network to
implement the concepts. Since then 17 states have done their own ACE surveys, with results similar to the CDC study. Some cities have set up ACE task forces. Trauma-informed practices are popping up around the U.S., Canada, and countries in Europe,
Asia, and Central and South America in schools, prisons, mental clinics and hospitals, a few pediatric practices, crisis nurseries, local public health departments, homeless shelters, at least one hospital emergency room, substance-abuse clinics, child
welfare services, youth services, domestic violence shelters, rehab centers for seniors, residential treatment centers for girls and boys, and courtrooms.
In these dozens of organizations, the results of the new approach are nothing less than astounding: the most hopeless of lives turned around, parents speaking "ACEs" and determined not to pass on their high ACEs to their children, and a significant reduction
in costs of health care, social services and criminal justice.
Jane Stevens, founder and editor of the news site, ACEsTooHigh.com, where this story first appeared, and its accompanying social network, ACEsConnection.com, is writing a book about ACE concepts.
Comments
Adverse Childhood Study
Thank you for this study and what it means for abuse survivors. It not only may help us healthwise, but gives us much needed validation. This is the best results I have ever seen regarding child abuse survivors. I remember the moment I chose to gain weight and stop taking care of myself to stop getting attention. Now I come around some 57 years later, and want to lose weight and cannot. My abusers took my life. They didn't kill me. But they did take my life. My first memory is of dissociation. To this day, I cannot plan for the future. I am not able to dream about the future. I am not able to even make goals. I cannot do math if Mexican food depended on it. I am trying to retire early before they let me go. I've worked for the state for 29 years. I never thought I would leave like this. See? They took my life. Thank you so much for your study. The results of your study, in reference to myself, have been known to me, in my head. There was never anyone to talk about it with. If this is how I feel, how many more are there? I don't think it will help me, my future, but there is no doubt it will help countless others if you can get them to disclose. It's a shame really, that by the time a child can get help, it's already too late to stop the abuse.
your article
Even tho I am not overweight, I have 5+ Aces. I have been in therapy for over 10 yrs, hard drug user for 30+, and can relate to the other commentor. I can not even plan my day sometimes.
If I may state, all the therapy I have had has helped me understand, but to change the behavior, and I am not talking of taking drugs or partying, to change my attitude and behavior toward living a better life is threatening. I call it my self destruction part. This is the hardest part for me to engage and win over. And I don't even realize I am doing it until after its done. Like not wanting an ultrasound, so I keep canceling the appt. Make another, then the day before cancel it.This makes the dr mad and he gives up. But I don't know why I keep doing it. Most of the time I have no problem speaking up, but its like subconcious. I like the dr, know I need to have it done, but its like sabotage against myself. I know I am the one losing in the end.
This article is right on the button as far as what I have learned all those years in therapy. The hardest part is getting the money. And I just don't see that happening in todays times, at least in the US. And until we do, it will only get worse, and there will be more throw away children. How sad. I couldn't bear to know as a kid what my future was going to be like. Im so glad I am 60 yrs old.
in reference to Cara's post of 10/12/12
Cara, i recently read the first have of another study that relates childhood trauma/abuse to inflammation and auto immune diseases. Very interesting.
Beware of "discipline bias" and confusing association with cause
Kudos to Jane Stevens for a well-reported piece.
I must take strong issue, however, with the researchers focus and their conclusions.
I see not one mention of heritable psychiatric conditions, including neurocognitive disorders such as the highly heritable ADHD.
Yet all of these adverse outcomes outlined here are also associated with untreated ADHD. Moreover, children with untreated ADHD are more likely to be sexually molested as well as being sexually promiscuous at a younger-than-average age. Some will misread social cues to such a degree -- or be distracted or risk-taking -- that they will not realize they've found themselves in a compromised situation until it happens. Later, no one will help them to see how ADHD symptoms conspired to put them in harm's way (perhaps in the way of family member with impulse-control problems as well as paraphilias, which has been associated by Dr. Martin Kafka at Harvard with ADHD). Instead, some well-meaning therapist or pop-psychology at large will provide the explanation that their adult problems were caused by childhood sexual trauma.
What I find particularly worrying about these researchers' conclusions is that there is already a bias in the mental health profession toward blaming all adverse outcomes in adult life on childhood events. There is already a surplus of therapists who want to stamp "trauma-induced" over every maladaptive adult behavior. Moreover, there is an even greater bias against understanding the neurogenetic roots of ADHD -- that it's not strictly "behavioral" and behavioral interventions can go only so far. Especially once the child becomes an adult and has to regulate his/her own life.
No, I find this research and promotion of its findings very problematic. It is bad enough that physicians treating obesity, substance-use counselors, sex therapists, and all the rest do not understand the core role ADHD can play in the issues they allegedly treat. But to turn back the clock to the 1950s and make it all about childhood experiences without even considering the entrenched, generational neurocognitive conditions.....oh dear.
Those who are truly interested in preventing child abuse need to focus themselves on providing treatment for the tens of millions of American adults who suffer from psychiatric conditions, including ADHD, that can destroy their ability to parent effectively and consistently.
Gina Pera
Http://www.GinaPera.com