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Why we should think critically when reporting on childhood adversity

Why we should think critically when reporting on childhood adversity

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Why we should tread carefully when reporting on adverse childhood experiences
Image by RAYLAU via Creative Commons

[This is the first of two posts. Find part 2 here — Eds.]

What do juvenile crime, high medical costs, and short life spans all have in common?

If you believe recent health reporting on these and dozens of other topics, all of these can be traced back to something traumatic that happened to people when they were young.

Adverse childhood experiences (ACEs) is a field of study that dates back to a seminal study published in May 1998. But it is now very much in vogue as a way to explain a wide range of social ills. One sign of its policy currency was the California governor’s appointment this year of an oft-cited ACEs researcher and pediatrician as the first surgeon general of California.

I wrote recently about checking our biases when doing an investigative story. When it comes to ACEs, I think we all could do a better job checking our biases. The zeal with which we turn to ACEs as a root cause of so many things borders on the religious.

Why are so many people so fervently in the thrall of the ACEs hypothesis? Because it just seems to make intuitive sense.

How could neglect by a child’s parents not have a powerful downstream effect?

How could witnessing a crime – or repeated crimes – as a child not do serious physiological damage?

How could the stress of being bullied at school not create a toxic inner world that alters the body down  to the cellular level?

The answer is: We simply don’t know enough yet to be able to say that all of those downstream effects are really tied to ACEs.

Here is the first problem: It is very hard to establish that A caused B and then caused C when you are looking backwards over a trail of health records. That is known as a retrospective study, and such studies come with limitations. The original ACEs study, an effort by the Centers for Disease Control and Prevention and Kaiser Permanente, analyzed health records retrospectively to look for patterns.

Here is the second problem: This foundational study – while admirable for its ambition – took a snapshot comprising just seven months of survey data. It examined health data in Kaiser patients who took a survey between August 1995 and March 1996. A second wave of surveys were sent in 1997. Later studies took additional snapshots of patients in generally the same population but not necessarily the same people. For the one about life expectancies being shorter for people with higher ACEs scores, researchers looked at the same CDC-Kaiser surveys that were completed between 1995 and 1997 – a total of 17,337 adults surveyed – and then tried to use death records to figure out whether those same people had died between then and 2006. It found that 1,539 people had died.

So, think about that. Out of 17,337 adults surveyed, 1,539 adults had died 20 years later. Then, the researchers found an even smaller subset of those deceased adults who had scored six or more out of 10 on the ACEs questionnaire. The researchers wrote:

People with six or more ACEs died nearly 20 years earlier on average than those without ACEs … .”

Concluding that the experiences (divorce, for example) led to life-altering diseases and shortened life spans based on so little data — a total of 20 deaths — is problematic to say the least, as the authors acknowledge in the study.

Here’s the third problem: That original ACEs study was based on 9,500 members of the Kaiser Permanente HMO in Southern California. Even if we assume it is large enough to draw some good conclusions from the retrospective review of the data, subsequent studies have been far smaller in scale. Most are small studies with limited scopes that are difficult to repeat. A recent study on college students and ACEs included 239 people. A study on ACEs and chronic pain included 141 people. A study on ACEs and lupus included 269 people. It is difficult, to say the least, for a small study looking at the self-reported incidences of traumatic events to establish that those events – assuming they all happened the way people say they remember them – led to the downstream impacts observed by the researchers.

The underlying problem with much of the ACEs research is that it relies on correlations between childhood adversity and later-in-life health and behavioral problems. But we all know correlation is not causation. One of the CDC and Kaiser studies says, for example, “our findings were based on a retrospective survey which made it difficult to distinguish the causal impact of ACEs on premature mortality.”

So many things can happen over a person’s life that isolating adverse childhood experiences from the millions of influences and experiences that followed is difficult.

So, why not do a study that tests whether ACEs really shorten life spans by two decades? The same study notes:

In theory, prospective studies related to child maltreatment would avoid these potential biases. In practice, given the social and legal implications, this type of studies are nonetheless difficult to conduct.

Scientists can’t corral a bunch of kids, neglect half, nurture the other half, and see what happens.

That doesn’t mean ACEs as a concept doesn’t have validity and isn’t worthy of further research. But too much of a focus on ACEs might actually distract us from tractable solutions, too. By blaming huge swaths of societal ills on things that happened to us decades ago – as opposed to things that we are doing to each other or doing to ourselves in the hear and now – it removes agency. It allows us to create a level of abstraction between the problem and the source, avoiding the really tough questions that topics like juvenile crime, health care costs, and chronic disease demand. If, as other recent health stories suggest, half of all kids suffer from ACEs and ACEs actually transmit their damaging power across generations, then what can even the best interventions do to reverse this course?

Comments

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I am a foster parent and an adoptive parent of Foster children. I also have 2 of my own. As a child I faced adversity and trials of many kinds of including the death of my mother, and bathroom it by my father, and abuse at the hands of my adoptive father. My biological children were raised in a home with both mother and father and I am still currently married after 33 years, and our contributors to today’s society in many ways. Including advocating for type One diabetics and helping other families learn to move forward in life with that diagnosis. My five foster children that I adopted at a young age have had issues with behaviors of all sorts. They were all born drug affected. I have been facelift to the genealogy of four of my five adopted children. And in the genealogy there is lots of addiction and abuse it seems to carry-on. And if you were to use aces you would say that is why they are having issues they’re having now as young adults. For me I find it very hard to not think about the genealogy and the alterations of Adams says are being put together in the mothers womb. I can’t help but think of how certain things must be altered or changed in someway or another because of drugs and/or alcohol and physical and emotional abuse happening during that time. Let alone the changes that happen to the parents of the parents of the parents of the parents. And so on down the line. I think as humans we want to find a cause for the effect of behaviors around us. Because if we know the cause then there must be a cure. Unfortunately there’s not a cure for individual human choices.

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I have an extremely impressive ACE score, but I was also lucky enough to have some caring adults around me that fostered resiliency. I'm an extremely fortunate person living a fulfilling life, though I get cancer rather often. I don't think that focusing on ACEs equates to ignoring the help people need later in life. My aim is to give people access to safety and equality every day of their lives. But there is no way to overstate how it affects you to grow up in constant fear. Despite my good fortune, part of me will always be that little girl in that horrible house. ACEs matter.

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Forty-seven states and the District of Columbia have done their own ACE surveys through the CDC Behavioral Risk Factor Surveillance System (BRFSS). The findings show similar or worse results than the original ACE Study. The National Survey of Children's Health has ACE results for children in all 50 states. The Philadelphia Urban ACE Study added several more questions to the original ACE Study (including, racism, witnessing violence outside the home, living in an unsafe neighborhood, involvement with the foster care system). Memphis, TN, did its own ACE survey. That's just a few of hundreds, perhaps thousands of ACE surveys, since many organizations are also doing their own ACE surveys for their workforce and clients/students/prisoners. As for consequences, if you do a search on PubMed for "adverse childhood experiences", you'll find hundreds of research publications that link ACEs to all types of chronic diseases. AND you'll also find the foundation of solutions there, too. In the education community, schools that have gone the distance to integrate practices based on ACEs science (at least a three-year journey) -- i.e., have become trauma-informed schools -- have drastically reduced or eliminated suspensions and expulsions, increased grades and graduation rates, and reduced teacher turnover. Clinics that have integrated ACEs science see ER use drop 30 percent. Juvenile detention facilities have no more violence. There's a lot that's being done to use this new understanding about how to change human behavior to solve some pretty intractable problems.

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I and other people I know experienced some form of childhood trauma whether at school, playing sports, or at home. I also know survivors of concentration camps during WWll who experienced the ultimate trauma of watching their parents be killed or starved to death. They have become successful remarkable people. I think some people have more resilience
than others. I also noticed when I worked at a large children's hospital in Oakland, Ca. that minority kids living in homes where they had little supervision learned out to survive and thrive.

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To begin to address the problems that stem from ACEs, people have to understand what ACEs are, how they disrupt the developing brain, impact behavior, genetics and increase health risks. The more talk of ACEs the better...the conversation creates awareness. By understanding ACEs and the changes to the child's brain, we can properly address the root cause of chronic disease, juvenile crime, and high health care costs - often related to high utilization by patients with several, poorly managed chronic illnesses. Rehabilitation for juveniles who weren't able to develop pro-social or self regulation skills due to an overactive fight/flight response is necessary, and these interventions cannot be delivered until we have systems that integrate trauma informed approaches into policies and procedures. It requires health care providers to spend more time with each patient and understand the root of the problem rather than prescribing another medication to address the symptom. Physicians don't have that time. Our current healthcare model doesn't allow it. They don't have time to counsel patients on how to better manage their conditions independently, or address barriers to health literacy or compliance. More medications, treatments and procedures are tacked on to the patient's growing list of chronic health conditions as opposed to addressing what lifestyle factors are detrimental and the patient's reason to continue engaging in unhealthy behaviors. And the patient with chronic diseases lives longer with medical advancements...with what quality of life? And health care costs rise for the general population as well. And who benefits? Pharmaceutical companies. Primary care physicians, I have gathered, are having higher burnout rates. By addressing ACEs now - through rehabilitation of at risk youth, trauma informed primary care practices, and overall awareness of ACEs for prevention from a young age we have a chance to reverse some of the damage and prevent the onset and advancement of chronic diseases. Certainly, more awareness and resources are necessary to convey the gravity of ACEs to the general population and create a trauma informed society. Cynicism of any kind is detrimental. In fact, the reason much of this research has remain grounded for so long is the necessity of health care providers, administrators and others to acknowledge their own ACE score, AKA family, childhood stuff or pains long stuffed away, and respond accordingly to emotionally prepare for such an undertaking. Usually the people opposed to the importance of ACEs are those who have yet to acknowledge, explore and heal from their own.

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