S2E5 / Adverse Childhood Experiences (ACEs) / Daniel Sumrok, Gabor Maté, Nora Volkow, Phillip Fiuty

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In the 1990s, researchers recruited 17,000 adults to answer questions about childhood stressors and trauma and their health. What does this groundbreaking research — the Adverse Childhood Experiences (ACEs) study — show us about how to treat substance abuse?

Note: This season of American Diagnosis was originally published under the title In Sickness & In Health. 

This podcast was created by Just Human Productions. We’re powered and distributed by Simplecast. We’re supported, in part, by listeners like you.

Phillip Fiuty: So when I would talk about things in the country or doing outreach in the mountains people were like you have heroin in the country? That’s so weird. But the other thing that people just had a really difficult time wrapping their heads around was intergenerational drug use, which is very common here.

Celine Gounder: This is Phil Fiuty. These days… he works as the Harm Reduction Program Manager for the Santa Fe Mountain Center. But in the 80s and 90s…. he struggled with opioid abuse. He says that when he explains intergenerational drug addiction… substance abuse problems spanning multiple generations of a single family… folks are nonplussed. They don’t, he says, make the connection between the trauma that gets passed down from one generation to the next… the traumas of early childhood… with drug use later in life. Because… whatever doesn’t kill you makes you stronger… because… kids need toughening up to survive in the real world.

Phillip Fiuty: …we always think that it’s, you know, the substances and the are side-effects and the withdrawal and all the rest of this stuff. That is what’s difficult for people. And you know, that’s definitely not what’s difficult for people and ends up leading to relapse and other problems, you know, six months or a year or 20 years after people, you know, after people manage to move away from that. It’s these other, it’s these other issues, it’s these other difficulties in life.

Celine Gounder: On this episode of In Sickness and In Health, we’re going to look at risk factors for addiction. But not the kind of risk factors you may be thinking of… growing up in the “wrong” neighborhood… hanging out with the “wrong” crowd… peer pressure… or wanting to look cool for friends.

Instead, we’re going to look at ten questions… ten questions about the first 18 years of your life… ten questions that might shed some light on why some people are more likely… much more likely… to become addicted… than others.

In the mid-1990s, the Centers for Disease Control and Prevention partnered with Kaiser Permanente — a large HMO — and together, they spent two years recruiting 17,000 participants for a study. These participants filled out a questionnaire that asked about their childhood experiences with physical, emotional and sexual abuse… physical and emotional neglect… domestic violence… substance abuse and mental illness in the household… loss of a parent or parental separation or divorce… and incarceration of others in the household. This was called the Adverse Childhood Experiences study — A-C-E or ACE for short.

Over the course of the study and long-term follow up with these participants, it was discovered that the number of different kinds of childhood traumas, or ACEs, that a participant reported was strongly associated with a greater likelihood of high-risk behaviors… like smoking, drinking and drug use. And participants with a higher ACE score… were also more likely to experience downstream health effects related to those high-risk behaviors… like cancer… or heart, lung and liver disease.

For example, people who’d reported five or more adverse childhood experiences, were seven to ten times as likely as those with zero ACEs to describe problems with drug use, addiction and injection drug use. The researchers found that adverse childhood experiences are all too common… and that if someone reported one, they were likely to report more than one.

This original study was groundbreaking… and prompted a lot more questions… and a lot more research… on seemingly unrelated problems… ranging from autoimmune disease… to sexually transmitted diseases… obesity… and work absenteeism.

But the results from the original study were boiled down into an easy to use ten question survey.

Daniel Sumrok: And what I do is, I put it in with the pile of junk that everybody has to fill out every time they go to the doctor’s office, right? …the what kind of insurance do you have form and, you know, you’re giving us permission to treat you stuff, and then they go out into the waiting room, and they read through all that stuff and they, you know, the ACE questionnaire merciful reading. It’d take a minute and a half for a slow reader to do it. And they’re all yes/no questions, so they answer that thing themselves.

Celine Gounder: This is Dr. Daniel Sumrok, the Director of the Center for Addiction Science at the University of Tennessee Health Science Center in Memphis. Daniel has a family practice too. He’s been working in addiction medicine for over a decade… but has been interested in the fallout of traumatic stress for much longer.

Daniel Sumrok: You know, I’m a clinical guy. I was interested in trauma first back… and I wrote a paper that was published in 1982,  I guess, about post-traumatic stress disorder as a public health issue, and nobody thought about it as that. And, you know, both of the people that read my published paper in the West Virginia Medical Journal, you know, fell asleep halfway through the article and, you know, it was crickets for years until the ACE study came out.

Celine Gounder: Daniel and his team have focused on adverse childhood experiences in their work for years. Daniel gives the ACE questionnaire to all of his patients along with the other intake paperwork they have to fill out. He uses their answers to the questionnaire to talk about those childhood experiences… which they may have left buried in the past… which they might not realize are connected to their health problems now.

Daniel Sumrok: Now an interesting thing occurs. They most frequently really underestimate their traumas, ‘cause then the part of the process then is, when they come back into the room you know I look at the review systems thing and you know, how are you sleeping, and how are you eating. How are you being in peeing and pooping and all that sort of thing, and then, and then I look at the ACE and I say, you know, you, you said here that nobody — the first ACE question says, did they put you down, humiliate you, swear at you or make you feel afraid that you might be physically hurt? — and I say, so that didn’t happen in your family, huh?

Celine Gounder: Daniel has found that his patients are more likely to confirm that a parent committed suicide or was incarcerated… what they might view as historical fact… but they’re less likely to share specific personal traumas… or experiences that reflect poorly on other family members… or that they think were simply par for the course… a normal part of growing up.

So Daniel starts by asking his patients how those events…  the suicide… the dad in prison… made them feel as a kid. Then he guides the conversation toward discovering whether someone had experienced other childhood traumas.

Daniel Sumrok: And then frequently, they’ll tell me that actually there was some things that happened and then they’ll say, you know, that’s just how I grew up, you know, and I grew up in the 50s and 60s. I’m telling you that if they weren’t putting you down, humiliating you, swearing at you and making you…  insulting you, making you feel like you might be physically hurt, they weren’t doing it right, and they didn’t mess around with all that. They said, “we’re going to whip your ass if you don’t get this right.” So I think lots of kids grow up in homes where they feel threatened and they just, they say, I thought everybody grew up that way. Right? That’s just how I grew up. Right. I only got beaten whenever I deserved it. People say that to me nearly every day. Somebody says I only got the beatings I deserved. Holy crap, what a frame of reference.

Celine Gounder: The point of the ACE questionnaire and the following conversation, Daniel says, is not to lead the patient in any way. He’s not trying to convince his patients that they’ve had bad childhoods and to blame their problems on that. He’s simply trying to give his patients permission… a safe place… to share their experiences… which they perhaps haven’t shared before because… in their minds… they’ve normalized those experiences… they don’t stand out as abnormal… or… because the frame of reference tends to be an insular one with childhood traumas.

If the patient answers yes to a number of questions, Daniel uses their ACE score to have a conversation… to help his patients understand what their experiences in childhood might mean… and potentially… to help them understand why they act or feel the way they do.

Daniel Sumrok: I say to them, then it looks like you have some of the symptoms of post-traumatic stress disorder and here’s, you know, hypervigilance and avoidance, and this what hypervigilance looks like and feels like, and this is what avoidance looks like and feels like this, does any of this seem, like, familiar to you? and then they’ll describe their own behaviors. And I think it really is a way to help people that have felt marginalized and ignored understand that they’re, you know, that they have a right to dignified care as well.

Celine Gounder: You might not think that someone would have a trauma- or stress-related disorder from something that happened in childhood… unless they lived in a war zone… or was in a car crash… or something like that. Some might say… get over it. But our understanding of these disorders… including post-traumatic stress disorder… as well as adjustment and attachment disorders… is changing. We now understand that depression, anxiety and inappropriate or maladaptive behaviors may be related to traumas and stresses experienced earlier in life. These events may be less overt… like emotional neglect… or having parents who struggled with their own mental health.

But getting people to acknowledge their adverse childhood experiences is still really hard… they might be ashamed… or think what they went through was normal… nothing to make a big deal about… or…. because they may not have clear memories of what those experiences were.

Daniel Sumrok: You may not recall any of that because you didn’t have a verbal framework to make memory out of. You just know that when certain things happened, you may not even know what those things are, you just feel bad. I have patients that say, “I was walking down the aisle in Walmart and I had to just leave my cart full of stuff and leave. I smelled Aqua Velva.” Right? And people will say, “I think the man who abused me wore Aqua Velva.” Right? Sometimes they don’t even know, sometimes they’re not even aware of that — they just know they feel bad and they have to go right away.

Celine Gounder: Daniel says there’s no doubt in his mind that adverse childhood experiences are important drivers of opioid abuse later in life. He says that the ACE scores of his patients are proof positive… and the key to this connection can be found in the brain.

Daniel isn’t saying we should look at addiction as a brain disease… but rather… view addiction as something related to traumas or stresses someone experienced early in life… and how they cemented someone’s emotional responses… including… the emotional relief afforded by opioids and other drugs… and the emotional injury inflicted when those drugs are taken away.

Phillip Fiuty: It started out as marijuana and LSD and amphetamines, you know, was the primary things. I was willing to experiment with anything because my initial use of those things was so positive — positive for me. And so, like, socially things improved for me, like a hundred fold. You know I became — I wouldn’t say popular, but you know I started getting along well, I got along well with all my professors whom previously I had been fighting with. I started getting, you know, not only passing, you know, getting A’s myself, I was able to help all my other like stoner friends with their homework so they could pass and graduate. [00:35:22] You know, there was there was a lot of positive reinforcement for that.

Celine Gounder: This is Phil Fiuty again, who we met at the beginning of this episode.

Phil grew up in a household where drinking was the norm… and though he doesn’t describe his parents as problem drinkers… his exposure to alcohol was early and normalized… with family members thinking nothing of pouring him some wine at parties when he was a little boy.

When Phil talks about his childhood, he describes what could be considered adverse childhood experiences without explicitly identifying them as such… early exposure to alcohol is an obvious one in someone who grows to become an alcoholic… but things like divorce… or feeling neglected… less-so.

Phillip Fiuty: You know, there was more drinking and stuff going on than that and I was privy to. I don’t really know — you know, I don’t really know how that affected overall situation in the family. I know that money was a problem for us, and at one point my father was working three jobs and was very rarely ever home. So, and then, in the course of that stuff there were a couple of separations that occurred and then finally you know my parent — my folks got divorced. And during that time they actually, my brother and I went and lived with my aunt and uncle in another state for about a year while all the nitty gritty of divorce transpired. And then when we came back we actually lived with my father, which in the 1970s was kind of unusual, but it was sort of a conscious decision on the part of my parents because my mother was unemployed and didn’t believe that she had the resources or the ability to properly take care of us.

Celine GounderG: Phil says his father remarried… and the relationship Phil had with this new family unit was strained. His mother argued a lot with his father and new wife… Throughout this period, Phil says, he was drinking… a lot… he was in trouble all the time. He would roam the streets breaking windows and smashing tires. Then, after he graduated from high school…

Phillip Fiuty: I think… overnight when I actually graduated from high school, I think my parents’ interest in managing me fell off to a minimum, and they, you know, began paying more attention to my other siblings. Suddenly it didn’t matter if I didn’t come home at night and stuff. I went away for my first year of college, and when I came back, I was basically told I couldn’t stay there, and so I caught a ride up to the city where the next college I went to was in, and just started a life there from scratch.

Celine Gounder: So, all before Phil was 18… he’d been exposed to alcohol and drugs, parental divorce and emotionally distant parents. None of which sounds all that unusual. As he entered adulthood, Phil says, he felt uncomfortable in his body… confronted by unrealistic expectations of how men were supposed to be… and perhaps, he says, because he was exposed to pornography early in life.

Phillip Fiuty: I was not clear on what was happening, but I was very very very uncomfortable with my physical body. I was very uncomfortable with sexuality and my identification as such. I think those two things kind of wove themselves together. I mean, I didn’t like or understand the body that I was in, and then because of that, you know, dovetailed quite nicely into the fact that I wasn’t good at the other things that it appeared to me that, you know, men were supposed to be good at in this country, and I think that all of the inundation with pornography kind of set me up for some unrealistic expectations of how I was supposed to be functioning in the world, what it meant to be a sexual male and all of that. So at some point you know at that time in my life I ended up — just ‘cause they were drugs and it seemed like you know, that was what I was into — I bought a bottle of pills from somebody, and they made it possible all of a sudden, I started figuring out sort of how to navigate my body and have, be able to function sexually with somebody. … And that was the beginning of my affair with opiates.

Celine Gounder: Phil became addicted to heroin and meth, and even when he found treatment for those addictions… he relapsed into alcoholism. He went to prison… and when he managed to arrive at a period of sobriety, relapse still loomed large.

Phillip Fiuty: You know you get six months, your six months sober or clean or whatever you want to call it. And then all of a sudden you get confronted with some mess, that you know, that you were part of when you were using. It just automatically brings up all of the feelings associated with the failure in the first place.

Celine Gounder: Phil describes… in his words…  this period of switching between sobriety and abuse as a merry-go-round of being loaded and then not being loaded… all of this tied up with pain… physical and emotional pain. When he was on this merry-go-round, he says, he felt as though he had no choice as to how he was going to behave. But right now Phil is in recovery… and he makes sure to monitor his feelings… works to keep his addiction contained… by trying to understanding those feelings.

Phillip Fiuty: there’s behavioral health services, which I check into regularly. I, you know, got a PTSD diagnosis and, you know, not really sure, what all it’s an amalgamation of. It really became apparent to me that, that I have that cycle built into my wiring somewhere. And it became apparent to me when I was in prison. I don’t think prison caused it. I think prison was just the final, you know, rub of the sandpaper on the blisters so to speak.

Celine Gounder: Phil recognizes that negative experiences… the blisters… are somehow behind his behavior. But he describes this as a cycle… something built into his wiring somewhere… not as something he can point to… a trauma he can name. What these blisters are, exactly, is hard for him to say… impossible for us to know. If we were to add up Phil’s ACE score… we might say that he has a higher likelihood of engaging in risky behavior than others might… but what else is going on here? What’s going on in the divide between traumatic experience and risk behavior?

Nora Volkow: And now with access to brain imaging and also in animal models we have started to recognize that one of the effects of social stressors during development is that it interferes with the proper connectivity of the brain.

Celine Gounder: This is Dr. Nora Volkow, the Director of the National Institute on Drug Abuse. You might remember Nora from our first episode this season… in which we asked whether addiction is a brain disease.

This connectivity that Nora is talking about… is disrupted by addiction… and by stressors and trauma. Which means that someone with a high ACE score… someone who’s experienced childhood trauma… who’s neurocircuitry has been changed by stressors and traumas earlier in life… who’s predisposed to risk behavior… who then engages in drug use… is both intensifying their existing neural disruptions… and more likely to become addicted because of that faulty wiring.

And some people, Nora says, have a genetic predisposition to becoming addicted… yet another layer in the complicated reasons why some people become addicted… and some don’t.

Nora Volkow: Well, we always like to come with models that say if it’s social or is it genetic but the reality is that basically biology doesn’t have these and so categorically expressing itself. And what we’re finding is that yes there’s clearly a genetic component. There is a very strong heritability on addiction.

Celine Gounder: Not everyone with a genetic vulnerability will develop an addiction… and what Nora is finding is that those adverse childhood experiences… that can help predict whether someone is more likely to engage in risky behaviors… can also trigger a latent genetic trait.

Nora Volkow: So for example you may have a gene that makes you more vulnerable to adverse circumstances. And so if you have that gene and then you are brought up in an environment that is adverse then that increases your likelihood that you may end up taking drugs and becoming addicted. But you may have the same gene and be brought up in a very very supportive environment and the addiction never emerges. So it’s an interesting phenomenon because we’re coming to recognize for many of our genes, genetic associations and even in diseases like, like obesity, they are fundamentally linked with the environment. So you can have a gene that makes you vulnerable to gain weight if you eat the food that is high in fat. But, but that same gene did not produce obesity for hundreds of years seen in humankind. It’s not until we’re in an environment where where the food that is high in fat is highly available and actually quite accessible, very low price that we start to see obesity emerge.

Celine Gounder: So what can we actually do with all of this information? A patient takes an ACE survey… and perhaps a physician retroactively discovers a potential root cause for the patient’s depressive or anxious symptoms… or drug use… how, then, can we help that person who’s now facing the health effects of stress or trauma experienced in childhood?

Nora Volkow: It’s important to understand obviously these interactions because, as of now, we cannot cure a genetic disease, per se, for the most part. But what we can do is if we understand how that gene interacts with the environment, we can actually do prevention interventions to buffer those adverse environmental effects and that’s ultimately many of the aims of where the whole interest of taking some of these findings about who is vulnerable and why are they vulnerable for these diseases. Who is vulnerable for addiction? And what is it that we can do to actually minimize the risk from that vulnerability?

Celine Gounder: ACE surveys provide a framework to help us trace addiction back to childhood trauma… to recognize that trauma and addiction are linked… and understanding this linkage might be a tool in navigating addiction… but if this is so often the case… why is it that addiction treatment focuses so often on the individual and their choices?

The notion of addiction as a symptom of PTSD and other stress- and trauma-related disorders… is not at top of mind in the national conversation about addiction. But there are some in the field who are looking at the trauma-addiction connection as absolutely vital to understanding and treating drug users.

Gabor Mate: What we have to understand is that, and I’ll generalize this to all hardcore addiction-affected people have been traumatized as children. … And… what trauma does to people is it gives them a certain perspective on themselves and the world. And when children are traumatized, they naturally don’t trust the world, and they don’t trust authority figures because very often they were hurt at the hands authority figures who were supposed to care for them. Meaning parents, meaning teachers, meaning religious persons and so on.

Gabor Mate: This is Dr. Gabor Mate, a Canadian physician with a particular interest in childhood trauma and its reverberations throughout our lives.

He says that people with addiction need specialized care for trauma… that’s sensitive to their distrust of authority figures. As we’ve discussed, people with high ACE scores are more likely to engage in risky behaviors… and to develop addictions… and those same people had caregivers… in childhood… who showed themselves to be… at least at times… unreliable.

But that doesn’t mean clinicians who care for patients with addiction are coming up against an impossible task. It means they have to present themselves as consistent, compassionate and trustworthy… by showing their patients that they won’t be retraumatized.

Gabor Mate: Now if they can come to a facility where they are actually accepted for who they are, and respected, and all of a sudden get help in a way that’s very different to what they’ve been used to all their lives, and of course, for them to receive help, then, we have to transform that relationship. And so that in the harm reduction setting, there’s a real potential to transform that relationship which then makes it more likely that people who receive other help that they need. It’s quite extraordinary.

Celine Gounder: Gabor has done work with InSite, a harm reduction program in Vancouver… so he’s experienced this kind of relationship makeover first-hand. That kind of work necessarily requires clinicians to suspend judgement… and has granted Gabor a glimpse into the kind of relationship transformation that’s possible when traditional notions about addiction and addicts are abandoned in favor of understanding and embracing the whole person.

Addiction, Gabor says, is a self-worth disorder…  it’s a way to satisfy the dearth of comfort and security that exists for someone who’s experienced childhood trauma. That understanding, he says, is essential to finding a way to help, rather than mask or perpetuate someone’s addiction. And the thinking right now… he says… it isn’t helping… because we still don’t really understand what addiction is.

Gabor Mate: And unless we really get that what addiction is — people’s desperate attempt to solve a life problem of unease, discomfort with the self, the emotional pain, lack of self-worth, shame… And that the disease model can be grafted onto that larger understanding, but it doesn’t fully subsume it, we can’t help addicted people very much, and all we’re left with is physical solutions.

Celine Gounder: Gabor wants physicians, therapists, teachers, police officers and lawmakers to recognize the childhood experience that he believes is at the core of addiction… to see that addiction is, essentially, a developmental issue… not a deliberate choice.

Gabor’s thinking is rooted in the universality of human experience… he believes that we have to look at the bigger picture… beyond the brain, beyond drug users’ present-day or trouble behavior… and recognize that what they need are healthy relationships… especially because they were deprived of them as a child… even if that deprivation may not be so obvious to us… or even to that person struggling with addiction. Healthy relationships, Gabor says, are at the core of our motivations… and our feelings about ourselves and others.

Gabor Mate: Why are we that way? All mammals are that way. Because we can’t survive otherwise. You know, you can’t survive on your own. The infant cannot survive without relationship. That means we can be hurt in relationship. And by the way, it doesn’t take overt  trauma. You know, people sometimes say, “well I know lots of people who had truly happy childhoods and they’re addicted.” Well, no, you don’t. Those people that sound like they had perfectly happy childhoods, maybe weren’t traumatized in an overt sense, but they had emotional pain at some point. Because of their relationship with the adult caregivers in their lives who were maybe too busy, too stressed, too depressed, too traumatized, too troubled, to connect with them the way the child needs to be connected to.

Celine Gounder: So, how do provide this kind of holistic, nuanced care? Gabor sees it as a matter of education… and of expanding the boundaries of addiction thinking to emphasize interpersonal relationships… especially those between caregivers and their charges.

Gabor Mate: So what I’m calling for is that everybody who deals with children and troubled adults, needs to be trauma trained. They don’t have to be deep trained. They just need to understand it.

Celine Gounder: And though Gabor disagrees with the prevailing thinking of addiction as a brain disease, he does see the opportunity to implement this kind of trauma-informed approach within the scope of present-day best practices.

Gabor Mate: I mean, sure, even the report of the previous Surgeon General, Vice Admiral Murthy, that came out in November on addiction recommended some of these ways. I don’t agree with the fundamental thesis, which is that addiction is this primary brain disease. We’ve already talked about that. But they do talk about social and psychological factors. Community-based approaches, housing, treating people with respect, not assuming that they’re bad or ethically failed because they use drugs. They talk about prevention programs… I think that this approach can be bought into the schools and into the adolescent court system.

Celine Gounder: In the fight against opioid addiction… stigma is now widely recognized as something that gums up the operation… prevents clear, purposeful and compassionate thinking…. slows treatment innovation… and perpetuates addictive behaviors.

So the medical, law enforcement and legislative communities are slowly opening up to creative, curious thought about the reasons and the person behind an addiction. Clearly… the status quo… “get over it” or “lock ‘em all up” isn’t working. Integrating an understanding of adverse childhood experiences into this approach has the potential to broaden thinking… not just about care for someone struggling with addiction… but about how to prevent addiction from happening in the first place.

But how do we buffer against adverse childhood experiences? Recognizing the warning signs… the stressors and traumas that some, like Gabor, believe precede all addiction… could mean addressing the need for compassionate and trustworthy caregivers before an individual seeks comfort in drug use. It’s teachers, counselors, coaches, police officers and so many others… who come face-to-face with young people… who represent the first line of trauma care. They interact with young people long before they come to a doctor’s office for addiction treatment later in life.

Even without an ACE survey in hand, understanding childhood trauma could inform the way a teacher responds to a student who talks back… the way a police officer responds to a lawbreaking kid… it could put us on the path to addressing the traumas that drive addiction before addiction takes hold.

Today’s episode of “In Sickness and in Health” was produced by Hannah McCarthy and me. Our theme music is by Allan Vest. You can learn more about this podcast and how to engage with us on social media at insicknessandinhealthpodcast.com, that’s insicknessandinhealthpodcast.com.

If you or a loved one needs help, you can reach out anonymously and confidentially to SAMHSA’s National Helpline at 1-800-662-HELP, that’s 800-662-4357. SAMHSA stands for Substance Abuse and Mental Health Services Administration. You can also find information online at www.findtreatment.samhsa.gov, that’s www.findtreatment.samhsa.gov.

I’m Dr. Celine Gounder. This is “In Sickness and in Health.”

Dr. Daniel Sumrok Dr. Daniel Sumrok
Dr. Gabor Maté Dr. Gabor Maté
Dr. Nora Volkow Dr. Nora Volkow
Phillip Fiuty Phillip Fiuty
Dr. Celine Gounder Dr. Celine Gounder