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.