The ACE Survey is Unusable Data

Corinna West
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In Kansas City, a group called Resilience KC is spending a ton of money to ask people what their ACE survey scores are. ACE stands for Adverse Childhood Experiences and the survey was developed based on research showing that high trauma scores increase health issues. The survey data presents a conundrum. Do the effects of trauma matter more, or a person’s ACE score?

This blog is a response to Resilience KC’s editorial about how awesome it is to go around asking people their ACE survey score. I think this is unusable data that harms people when you gather it. Here’s why.

1) ACE Screeners Don’t Address Risk of Harm from the Survey Itself

I had a moment of sheer revulsion when I heard that ACE screening was going to be the focus of the Resilience KC project. This was partly because of an experience I once had while teaching a youth leadership workshop. I had planned a short lecture about ACE scores in the middle of the day. The kids had been interacting well all morning, doing various parts of the workshop, but after the ACE lecture three of the kids hid under their tables and did not come out for the rest of the day.

What this experience showed me is that it can be traumatizing to ask someone to categorize all their negative life experiences, especially without a discussion of what their strengths or assets might be.

I had another experience during my job working as a peer specialist at a homeless shelter. A lady I worked with had filled out an assessment of all the things she needed to work on. The assessment said she had relationship issues, employment issues, addiction issues, legal stuff to deal with and probably more. This lady got so discouraged. She said, “All I have are problems,” and for a week she stopped working on the program that the homeless shelter had to help people out. (Not that the program worked; permanent supportive housing is a better option, or tent camps if you ask a different type of advocate.)

I’ve also had a similar experience myself when being screened for ACEs during the intake in my brief foray back into mental health “treatment” last year. This was before I figured out that my issue was migraine, not borderline personality as the psychiatrist wanted to label me. Migraine drugs are helping immensely! I can work again! But during that screening they asked me about all my negative life experiences. My two support people learned some stuff about me, and I got highly re-traumatized.

Do all these people that hand out ACE surveys know how many people they might hurt, at least temporarily? I’ve never heard ACE survey people talk about the risks of harm from being surveyed. And those risks are not zero.

2) The ACE Survey Score Doesn’t Correlate with Trauma Effects

Do we need to know ACE survey scores, or do we need to address the effects of trauma? They are not the same thing.

The effects of trauma are important: increased suicide, substance use, mental health labels, physical health issues, more domestic violence, more incest, etc. These all happen at the same rates in rich neighborhoods as in poor neighborhoods (according to Missouri BRFSS data, and there is similar screening data in all states), yet ACE scores are higher in poor neighborhoods. Why is this? If trauma effects are the same, why would ACE survey scores be higher in low-income neighborhoods?

The answer is that the ACE survey is biased against working parents. It doesn’t assess the types of harm that middle class young people experience, it doesn’t assess medical harm, and it doesn’t account for the relativity of trauma.

This is not a neighborhood thing, this is a universal thing. I’m tired of these blog posts about how “Life is horrible for YOUR neighborhood.”  Like inner Kansas City, Kansas, where I live. People are continually pointing at my zip code and saying, “They’re doomed, we gotta help…”

How about, “These neighborhoods obviously know something about how to process trauma more effectively. Because their trauma scores are higher, but the trauma effects are still the same.”

How about looking around and figuring out what my neighborhood knows that suburban types have missed? You might see the higher diversity that puts lower pressures for conformity on kids. You might see the lowered pressure for “success” as the world defines it. You might see the community gardens, the barber shops, the park benches, the bikeability, the ethnic grocery stores, the entrepreneurial spirit alive and well. You might see the people at the bus stop who will joke with you as you ride by on a bike, the greater number of public conversations available on a day-to-day basis. You might see the ability to live a low-income life with dignity, because it’s the standard here, and not “failure.” You will see respect for the working class in my neighborhood; access to decent housing, public transit, social supports. There are stronger churches here that are community churches, not mega-churches where people stay totally anonymous.

The suburbs have very little of this. This is why their trauma effects are the same even though they have lower ACE survey scores. Suburbs don’t have the infrastructure that moderates trauma.

Learning is a two-way street. What did the Resilience KC people learn from us lately?

3) Talking About a Problem Without Talking About a Solution

Another way that telling people their ACE score can hurt people is by giving them a diagnosis of a “problem” without giving them a solution, or only a partial solution. For example, some ACE surveys have a quick-tip “guide for resilience building” on the back. But those are all individual-level suggestions. When you look carefully at resilience, this is a community-level thing. Many ACE screeners are all about self-soothing in response to trauma, but they forget to work on community-level solutions to stop the trauma from happening in the first place.

The Frameworks Institute is very clear that when you are talking about social services, you need to focus on community-level issues. Most social injustice and poverty-related issues were the result of a deliberate policy-level decision, not just a personal failure. But when social service promoters use individual-level stories to explain the need for supports, they derail the policy-level solutions that are needed.

Why gather a ton of individual-level data to promote things that have to happen on a policy level? Why promote individual-level solutions when the answer is a community-level solution?

I’m tired of academics writing grants about MY community without bothering to create any kind of evidence-based input about what we need. The Resilience KC coalition refuses to adopt evidence-based community input practices. Recently they told me, “Well, everyone is invited to our meetings.”

I said, “Well, that’s one item out of about 20 items needed for evidence-based community input. I guess one item is better than zero, but it’s not good science.”

So when people want to stop passing out ACE surveys and start actually helping people, the coalition of survivors and artists and advocates that I am forming might be able to collaborate.

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18 COMMENTS

  1. Corinna,

    Regarding this, “The effects of trauma are important: increased suicide, substance use, mental health labels, physical health issues, more domestic violence, more incest, etc. These all happen at the same rates in rich neighborhoods as in poor neighborhoods (according to Missouri BRFSS data, and there is similar screening data in all states),”

    The link you gave to the BRFSS data does not even list most of these trauma categories… it says nothing about incest or suicide, for example. So, linking this as a data source for comparing rich and poor neighborhoods does not prove anything about the notion of certain traumatic events having the same frequency in poor or rich neighborhoods (something that sounds rather unlikely…). You also said there was “similar screening data” in all states, but provided no references.

    Can you clear this up?

    On the other hand, I agree that ACE score is subjective and does not properly take into account the degree or ongoing length of the trauma, nor how the individual responds to or copes with it. Any individual ACE score could be very misleading in terms of what it says or doesn’t say about the severity of an individual’s trauma and their ability to respond. An ACE score is like a two-dimensional measurement in a four-dimensional world (the fourth dimension being time…)

  2. Survey responses tend to be less than reliable to begin with. Ask people about themselves, for instance, Are you a good citizen? etc., and see what kind of answers you receive. I doubt you’re going to find many admitted criminals confessing in such a survey.

    What’s more, we’re talking about “eye witness” evidence and hearsay, both of which are notoriously unreliable.

    One problem is how, without a test of some sort, do you measure “trauma”? I leave that one to the imagination, not having an answer, and not wanting to add to the issue through exaggeration–all too common in the mental health field where I feel more mountains are made of molehills than molehills are made of mountains..

    That childhood trauma should evolve into adult trauma I am not surprised about in the slightest. I figure sometimes, when you want a different outcome, achieving such would require changing train tracks and heading for a different destination, metaphorically speaking. The Ignominy Train, for one thing, is not The Glory Train. Nor is it The Gravy Train that I am aware of. Do we presently have a Recovery Train or a Trauma Train? If you ask me, indefinite “recovery” is a pretty traumatic experience.

  3. How about looking around and figuring out what my neighborhood knows that suburban types have missed? You might see the higher diversity that puts lower pressures for conformity on kids. You might see the lowered pressure for “success” as the world defines it.

    Sorry, that doesn’t conform to the liberal psychiatric narrative. You must realize that you are a helpless victim who needs “mental health services” to survive…(repeat over and over)…

  4. The Adverse Childhood Experiences Study, like every study, is not the end all and be all of everything. However, I do believe that it points out some very glaring problems about what is happening to our children in our culture here in the United States. The prevalence of child abuse cannot be denied. It’s very interesting to me how so many people do not want to discuss these problems at all and even deny that they happen. When it comes to child abuse in this country we tend to stick our heads in the sand and pretend that nothing at all is going on.

    • Children are being mistreated. Adults, too. Perhaps the mistreatment of children leads to the mistreatment of adults. Did I miss anything? Explaining Adverse Adulthood Experiences through Adverse Childhood Experiences strikes me as kind of disingenuous. You got any other kind of experiences with which to contrast adverse experiences? I’m not sure this kind of approach involves shifting people from situations in which they are certain to experience adversity into more opportune situations. Maybe it should.

  5. Hi Corinna,

    Thanks for the article. As someone who does research in this area, there are some things I disagree with. First, though, there are many points that I agree with. I agree there are a lot of academics who fail to involve community input and many of studies lack relevance to community level change. I have been trying to get out a paper for nearly a year on a rather basic aspect of child abuse with obvious importance to interventions (that is practically ignored in the literature), and the reviewers don’t seem to care. “Lacks innovation”, they say.

    Also, as someone who has also experienced sexual abuse firsthand, I too am concerned about the lack of discussion about risks of administering these surveys. More so in a clinical context than a research context. In research, they should have been informed before participating that these questions would be asked, and given a choice to decline participation. Your repulsion, if I understand, is linked to clinical administration, which you can’t really opt out of without making a fuss or being labeled difficult, and to giving a lecture about the effects of ACE with kids (which I’m not sure why someone would do, especially if there was no discussion about resilience, or plans about what to do if kids become upset or start disclosing abuse!). I think giving these surveys at an early appointment (especially intake) with a healthcare or service provider is a bad idea. When I was in therapy, my own abuse wasn’t something I was comfortable talking about until I had trusted my therapist (and it was my decision to bring it up)…

    As for where I disagree, I’m not sure where you are getting that the BRFSS found that suicide, substance use, mental health labels, physical health issues, and domestic violence were equally common in poor versus rich communities. Even if they had this finding, there are several other studies where all of these factors have been associated with low income communities. Also, while there are low income or otherwise disadvantage communities that have qualities that encourage resilience, this is far from universal. Likewise, there are suburban or more advantaged communities that have cohesion and other factors that would encourage resilience. This (factors both at an individual and community level that encourage resilience) really isn’t very well studied. I definitely agree this deserves more attention (especially community level), but I don’t think it helps to make sweeping generalizations.

    Also, remember the ACE survey is far from the only instrument used to measure childhood trauma. I agree, it’s not one of the best and leaves out several important traumas and aspects of trauma like timing, duration, etc. But even if there are problems with that particular measure, I disagree that measurement of childhood trauma has no value. I think combined with measures of resilience it could be quite useful.

    Finally, while the effects of trauma need to be considered, not just the experience, there are certain experiences that should matter, regardless of whether one is resilient to adverse effects (e.g., being raped by your uncle, or beaten by an alcoholic father). Even beyond health implications, these experiences in and of themselves have human rights implications.

    • Thank you for your reply. Well stated.

      I also agree with the observation that the way trauma is dealt with (or not dealt with usually) by the system is a big problem. These kinds of issues will not be discussed by people who’ve experienced them unless they trust the person they’re dealing with. Usually, at intake, some psychiatric nurse throws a check list down in front of the person and tells them to check off the things that apply. This would be bad enough but at least if the information were used wisely to help the person explore their trauma if they so desired it might lead to something useful. But of course nothing is ever done with the information, they just go through the formalities of doing things because they are mandated by the administration to do so in order that the institution can claim that they’re trauma informed. Trust me, I work in Admissions in a large state “hospital”, where the check list is initiated. I also work on the units where things are supposed to be followed up on. Fat chance of that ever happening. I was told to my face by the psychiatrist on one of the units that they haven’t got time to do any work on trauma. But they sure can fill people up with the toxic drugs. And of course, trauma issues never get taken care of with the drugging as the only option for “treatment”.

  6. The vast majority of people are in deep denial. And besides, such surveys are insulting and harmful.

    Abuses and injustices should be redressed by legal and political action. And the first rule of this is that you never discuss personal matters with non-comrades. You maintain operational security.

    Nomadic

    Move From Talk To Action, Please Join:
    http://freedomtoexpress.freeforums.org/fighting-to-eradicate-the-mental-health-system-and-incarcerate-the-practitioners-f2.html

  7. Hi Corinna – Always like hearing what you are up to!
    Regarding the ACE Study — Its value is in what it reveals about the impact of very specific, early adverse events to later-life health and wellness issues. The ten ACES in the short form questionnaire are not meant to be comprehensive, nor representative of the types of trauma in our society. Mainly, the function of the ten ACES is 1. Many of us have experienced these events as part of our normal, day to day life. But we’re not paying attention to the cost of these events, and 2. They are specific enough to be definable, and therefore measurable. That’s it. I don’t think the ACE is meant to be inclusive, comprehensive or take into account resilience factors, socioeconomic stressors, meaning making around events, whether the event is shared — or other dimensions that I think people tend to pin to it. Some of the conclusions I draw from the ACE study include 1. the incredible cost in dollars we are spending on services and systems that do not address underlying conditions that lead to these problems and social challenges in the first place, 2. the need for a public health approach to addressing social and interpersonal factors that impact on health and wellness, and 3. the importance of a trauma-informed approaches in social services, judicial system, education, foster care, homeless services, addiction services, in our communities, and more. The value of teaching the ACE study is that people begin to understand the trajectory that early adversity creates – how we land where we land. We can begin to make sense out of our own and other’s pain. it also shifts the focus from the problem within the person to seeing the problems in the world impacting on the person. This is the birthplace of social change. Intervention has to be at the level of the family, or community. No longer can we see sick people, we now see a sick world – and with this vision, new ideas for intervening and for healing. I am with you on the fact that the ACE questionnaire gets used without follow up, or context. When used as a screening tool without committed attention to the pain that it reveals – that to me feels criminal. I share some of the blame. I use to invite training participants to fill out the questionnaire. I soon learned that people need time to process the implications of their own scores.

    • Thank you for this very informed reply. You’ve laid out in very clear terms what the value of this study is to our society.

      I also appreciate your comment about how the questionnaire is used in groups. I use it in seminars that I do concerning trauma and have seen how the information affects people when they realize that they have a high score. And of course, there is very little way to follow people if they want to pursue doing anything about it. I can immediately tell the people who’ve experienced and suffered abuse by the looks on their faces and their body language.

      This has bothered me greatly but I was too blind to figure out what to do about it. Thank you for showing me the way this morning. I will no longer give the questionnaire out and encourage people to fill it out since I now realize that this is just another way to re-traumatize them. I will offer it at the end of the seminar if they really want to have a copy but will no longer use it as part of what I do in my talk. Thank you again for this insight.

  8. Mapping stress effects to ZIP codes is interesting as an academic exercise, but the practical question is what to do about it.

    What we should emphasize, the problem of trauma or the solution? Put me on the side of emphasizing what to do. No matter what one’s dose of trauma, the way out involves finding safety, reckoning with what happened, and rejoining the larger community. My question for those do-gooders with their data about trouble across ZIP codes is how do they propose to help people find safety? It’s important to ask what does this group of people in this place want to do to reduce its exposure to racism, poverty, hunger, and violence.

    Of course, we have a catalog of approaches that are helpful. Resilience building starts in infancy, with strong parental attachment — so the first layer of prevention is helping parents do better. The second is to prevent bad things happening around kids as they grow up.

    For what helps kids anywhere, a good approach for youth success is from Search Institute — their 40 Developmental Assets approach shows how access to role models, opportunities to learn, and building a sense of self-efficacy helps kids succeed.

    The best research I’ve read lately about kids growing up in highly stressed environments is “Coming of Age in the Other America,” published this year, about kids growing up in Baltimore. The authors discovered that kids growing up in tough circumstances tend to do best when they have an “identity project” — a way of building a future they can visualize and work towards, especially if that is supported in some way by a comminuty, institution, or other person. In other words, a role model and sufficient resources to help the kid deal with the inevitable challenges.

    Corinna’s program Poetry for Personal Power is a good example of how to help kids come to terms with the challenges they have dealt with in their lives. Without stigmatizing or retraumatizing anyone, her participants tell others how they became heroes.

  9. I like your perspective, your questions, and your thoughts about alternative ways of responding to the information gained. In my training/work as a Psychologist, the emphasis for testing was the identification and delineation of factors related to “problems.” Tests/assessment tools were geared mostly for pathology identification, and too rarely attended to strengths. Even treatment “progress” in some models would focus on the frequency, intensity, and duration of the “problems,” and would be measured by decreases of these factors accordingly. Refocusing on strengths, past successes, and incremental improvements toward adaptive activities seems much better informed, and a source of hope and inspiration.

    Thanks for the good article.

  10. I still don’t see how Adverse Childhood Experiences aren’t going to lead, inevitably enough, to Adverse Adulthood Experiences without a change of direction, a different route, that is, the intervention of auspicious, beneficial experience. This is the problem, as I see it, with explaining Adverse Adulthood Experience through Adverse Childhood Experience. You can take a wrong turn, surely, but continuing in the wrong direction, or not taking a turn towards advantage, is not going to help. In other words, analysis is not enough, change is required, if Adverse Experience is going to give way to Auspicious Experience. I guess, in the final analysis, old habits ‘die hard’.

    Oppression is not going to end without a fight. It is too advantageous to the oppressor. I also don’t see self-oppression as a positive thing that leads to liberation. Colluding with one’s oppressors can only push liberation ever further into the future. Doing so is rather like continuing along a wrong road once you know you’ve missed your turn. No matter how much further you journey, you know you’re not getting any closer to your destination.