‘Your brain is not broken:’ ACEs screening draws pushback
Screening for adverse childhood experiences (ACEs) – risk factors that are linked to serious disease, disability and premature death as adults – may reinforce the very health inequities it is supposed to treat.
Two decades of scientific studies have warned us of the dangers of persistent childhood stress and trauma; screening for ACEs such as physical and emotional abuse, neglect, caregiver mental illness and household violence was seen as a way to recognize this widespread, toxic problem. An estimated half to two thirds of people have experienced at least one adverse childhood experience and nearly a quarter have experienced three or more.
However, just as California begins widespread screening of its citizens and Canadian doctors debate whether to follow suit, the screening tool and its potential impact is under attack from some of the very scientists who first identified ACEs as a health risk.
Robert Anda, who first co-developed the ACE measure in collaboration with the U.S. Centres for Disease Control and Kaiser Permanente, one of the largest nonprofit healthcare plans in the U.S., says ACE screening has “misappropriated” his research, is not scientifically vetted and must be stopped. Other researchers and physicians agree that ACE screening can be inaccurate, ineffective and harmful.
Despite this, the screening is growing in popularity. Naming childhood adversity as “one of the most serious, expensive and widespread public health crises of our time,” California’s surgeon general, Nadine Burke Harris, recently set a precedent by allocating $95 million over the next two years to train and fund doctors to screen millions of patients for ACEs during routine primary care visits.
Testifying before the California House Committee on Education and Labor, Burke Harris said she hopes ACE screening will lead to early intervention with rapid referrals to supports and coordinated care plans across sectors such as communicating scores to schools. For adults, those who screen positive could benefit from providers offering trauma-informed care, changing the narrative from “something’s wrong with you” to “something happened to you.”
But Canadian doctors are struggling with how to address the issue without imposing a remedy that’s worse than the problem, which has been linked to a long list of illnesses including cancer, heart disease, stroke, asthma, COPD, diabetes, chronic pain, mental health problems, substance use disorders, job instability, social problems, learning disabilities, and violence.
“As an ACEs working group, we’ve moved from ‘let’s screen everyone’ to ‘let’s be sensitive and transform the way we are connecting with our patients in terms of understanding the impacts of ACEs,’ ” says family doctor Shirley Sze, head of the British Columbia ACE Working Group.
Anda’s team highlighted ACEs as a public health crisis in a landmark 1998 study linking childhood adversity to poor health outcomes. Anda’s follow-up study in 2009 noted that people with high ACE scores die nearly 20 years prematurely.
The gravity of the findings had doctors racing to act. “A member of our working group said, ‘With this knowledge we have to go out there and screen people!’ ” says Sze.
Physicians adopted “trauma-informed care” for patients with high ACE scores, recognizing people with trauma as strong survivors with agency rather than being deficient and powerless.
“It’s really about seeing that person as they are, validating them, and walking beside them on their journey. It’s relationship-based care that is most important for patients to improve,” says Sze.
Then came the push-back.
Anda says he co-developed the ACE questionnaire as a tool to research large populations and was alarmed to learn it was being used to screen individuals. Because California has approved ACE screening, Anda says he worries other governments will assume it’s safe and vetted – when it’s not. He wants ACE screening stopped until it’s reviewed and approved by the U.S. Preventative Services Task Force. But he says he doubts it would make the cut.
John McLennan, child psychiatrist and associate professor of medicine at the University of Calgary, similarly warns that ACE screening fails all of the key criteria needed to be approved as a health screening tool.
The ACE checklist is a tool to research averages of populations and is far too crude to predict anyone’s individual risk, Anda argues. The tick box ACE score does not measure the intensity, frequency or timing of the adversity or the child’s access to supports and protective factors. And not all ACE scores are created equal, he says. Ongoing sexual abuse from a parent would receive the same one point as a parent’s brief mental health condition.
California classifies people into low, medium and high risk for “toxic stress” based on their scores. Anda says there is no credible research to support these claims.
Nor is there any evidence that any intervention is helpful for people based on their ACE scores alone, McLennan adds. Instead, he recommends screening for specific risks that can be acted on when effective resources are available. However, ACE screening has been rolled out before there are any supports in place to offer those who screen positive.
Erika Cheng, a family physician who has been working in First Nations communities in B.C.’s north for 30 years, says compiling an ACE score “may make us feel like we’re doing something when we haven’t done anything to help them toward healing, especially if we don’t know enough about trauma and dissociation.”
“What I see in frontline care and in the literature is the more times you see someone and offer potential hope and then offer nothing, the more hopeless the person gets,” Cheng says. “One of the things we know from studies is one of the biggest reasons for suicidal risk is hopelessness.”
It is no secret that Canada’s mental health system already is overwhelmed and unable to meet the needs of those needing services. California’s rollout faced the same problem. Mercie DiGangi, a pediatrician at Kaiser Permanente, was an early adopter of ACE screening and agrees access is an issue.
“What do we do with these scores?” she asks. “Nobody’s really set up yet. How many providers are really trauma-informed trained? Not that many yet. Every single psychiatrist, psychologist and therapist is completely overbooked. There’s not a lot of access to mental health care.”
ACE screening can lead to needless referrals that increase stress and stigma, overload an already overwhelmed system and miss the people who actually need support. DiGangi’s clinics are finding that some patients with high scores are doing fine and don’t need the referrals that the toxic stress algorithm suggests while other patients with low scores would benefit from referrals.
McLennan warns that focusing on someone’s deficits goes against the strength-based approach of trauma-informed care.
“So, we tell them you have this exposure and you’re at increased risk. There’s no actionable activity,” McLennan warns. “Now you think ‘I’m damaged and there’s nothing I can do and my life’s going to be bad.’ ”
Alex Winninghoff, who spent her doctorate at the University of Georgia studying ACE screening, says ACE scores can create a self-fulfilling prophecy with profiling and low expectations. “The message is: You’ve had adversity; you have a broken brain,” she says. “It’s a deeply problematic and inaccurate narrative.”
Winninghoff worries that ACE screening obscures the conversation and allows us to avoid systemic problems like racism and poverty.
Cheng says an additional concern is who has access to ACE scores. “Once insurance companies hear about this, we might be mandated to do ACE scores and their insurance rates are going to skyrocket,” she says. “It’s inevitable.”
Researcher and child psychiatrist Matt Burkey, who trained in public health at John Hopkins University, says the benefit of ACE screening is that it highlights the need for prevention.
“If we really want to change this over the course of generations, we’ve got to look at this from a public health lens of what are the underlying upstream factors like poverty, inequality and education that are leading to such high rates of abuse, neglect and other adversities,” he says.
Considering how common ACEs are, why not assume everyone has ACEs and offer a trauma-informed approach universally, rather than targeting only those who screen positive.
The narrative should shift toward recognizing resilience, says Cheng. Teaching people about the biology of adversity can still be helpful, she says, but “never phrased as your brain is broken … Your brain is very smart and has adapted to survive.”