ACEs stands for adverse childhood experiences. A person’s score is typically a tally of how many of 10 such traumas — specific kinds of abuse, neglect or household challenges — they suffered before the age of 18.
Proponents of the measure, which was developed in the late 1990s, say a patient’s ACEs score is important to know, because adverse childhood experiences can be linked to widespread negative adult health outcomes, such as asthma, cancer, depression, diabetes, heart disease and stroke.
Burke Harris believes ACEs awareness can help address the emotional and psychological toll of the pandemic, and is relying on numberstory.org, a new website run by the nonprofit ACE Resource Network, to help promote that awareness. (You can learn your ACEs score and what it might mean by taking a quiz on the website.) The ACE Resource Network began a public awareness and outreach campaign about the website this week.
Burke Harris said the campaign is timely, because people who have experienced ACEs are more likely to be suffering from feelings of stress and isolation created by the pandemic. Number Story, she said, “takes what we’re feeling, and it gives us a vocabulary and resources as to how we can connect to support.”
Sarah Marikos, the epidemiologist leading the Number Story project, said it is taking a different approach than past ACEs education efforts. “A lot of work in this space previously has targeted — and rightfully so — health-care professionals, educators, child- and family-serving organizations, but our target audience is focused on adults, the general public,” Marikos said. “Only about 20 percent of U.S. adults know about ACEs.”
She and other experts familiar with ACEs argue that, just as it’s vital to know our family medical history — a proclivity toward heart disease or dementia, for example — it’s similarly important to incorporate personal history into medical assessments. These adverse experiences “can influence our immune system, our cardiovascular system, our metabolic system,” Marikos said. “Our bodies literally change because of some of the trauma we experience.” A study published in 2020 of 2013’s health-care system in California, for which Burke Harris was an author, determined that the annual cost of the effect of ACEs in California alone is $112.5 billion.
The site’s goal is to make ACEs scores as familiar a health concept to laypeople as weight, blood pressure, cholesterol levels and family history. But unlike some of those indicators, such as blood pressure, there are no universal cutoff points for healthy and unhealthy ACEs scores.
Number Story makes that point. After a questionnaire with 10 yes-or-no questions, users receive their scores and the message: “Here’s what you should know first: that number above does not define you.” A short video on the site elaborates: “A number is sometimes large and really scary, but it doesn’t need to be. You can step past it, or embrace it, or take it apart and put it back together again however you see fit.”
Critics question, then, how useful the score is. They also note that ACEs evaluations rarely get into specifics of developmental timing, duration, frequency or severity of ACEs triggers, and leave out a lot of traumatic events that children might suffer, such as bullying, racism and family estrangement due to gender or sexual identity.
Lisa Amaya-Jackson, a child psychiatrist and co-director of the UCLA-Duke University National Center for Child Traumatic Stress, is one medical expert who wonders about the purpose of the score. “If it’s for screening for treatment, potentially, then that would be problematic if you left out a lot of the other more important things: natural disasters, shootings, community violence,” she said. “If it opens the door to begin the conversation, that’s fantastic. But to draw conclusions is where I would worry.”
It’s not enough to know that someone experienced trauma, she added; the level of distress and functional impairment that trauma is causing are also important considerations.
Even some of the people involved in the study of ACEs advocate caution. Robert Anda, an early principal investigator who famously flagged that high ACEs scores correlate to a 19-year loss in life expectancy, called ACEs “a relatively crude measure of cumulative childhood stress exposure” last year in the American Journal of Preventive Medicine. “The authors,” he wrote of himself and others, “are concerned that ACE scores are being misappropriated as a screening or diagnostic tool to infer individual client risk and misapplied in treatment algorithms.”
Burke Harris, however, argues that there is value in the concept, especially in a nation where racism and sexism are known to corrupt health care. “When we have a public understanding and a public narrative that early adversity is harmful to our health, it extends our understanding of trauma writ large: racism, immigration and other factors also increase our health risk,” she said.
It can also help individually, she said: “That big piece of understanding of what’s going on with you creates a space for self-compassion. This is not because you’re broken or something is wrong with you; it’s a normal reaction to an abnormal situation.” Because she grew up with a mother whose schizophrenia was undiagnosed, Burke Harris said, her own ACEs score is “not zero,” though she declined to reveal it.
“I don’t share my number for two reasons,” she said. “It’s up to each person how much they want to share, but the other thing is that no four is the same as another four. No two is the same as another two. How it lands for me or you or another person, even if we all have the same number, might be different. You get to determine how your story turns out.”
Richard Morgan, a freelance writer in New York, is the author of “Born in Bedlam,” a memoir.