I've been seeing so many great articles about parenting with ACEs and understanding the intergenerational impact of ACEs. It's great to see so much coverage, research, and widespread sharing. 

BUT, I still don't trust systems enough to recommend universal screening. I don't trust that insurers or systems won't use that info. against people, won't use it against families and communities. 

So far, I'm still all about sharing this info., friend to friend, parent to parent, professional to professional. I think all parents need to know about the ACE study and all versions of the ACE surveys because they are SUCH POWERFUL and educational tools that are about collecting info,, data, and not in a therapy setting. That's powerful. We rarely have places out of a clinical setting to get clarity on what abuse, neglect and dysfunction even are. 

Before I read the ACE study I would have said I didn't witness domestic violence because it happened so early, mostly before age 2, I didn't even remember it and I've also have said I didn't experience physical abuse, despite having serious injuries, because also, it mostly happened in the first five years and wasn't big in my memory. And to be honest, I wouldn't have even thought of neglect as a kind of trauma, or some of the household dysfunction stuff as anything other than how life goes for some sometimes. 

To have a checklist, a "things not to do" to help kids live happy, healthy and longer, that is not steeped in unasked for advance, punitive policies, "fixing" or helping that also comes with judging IS HUGE. It's powerful. 

The ACEs score and study, for me, who did have an orientation that I just sucked and needed to be "better" at being a survivor, more resilient, less whatever, the ACE study/score was a game changer. I got to see things in a global, public health, way wider perspective that NEVER HAPPENS in a clinical setting. That was huge, empowering, encouraging and profound in my healing and parenting. And that's why I do this work. It cracked the door open in me to look from a way wider lens at individuals, at families, and systems, and see how widespread issues are. But it also helped me look more widely at systems and how they've failed so many individuals and families. 

Like our ACEs, something we know from our lives and experiences, but don't necessarily know how to name, or know is unjust or not ideal. That shift in seeing a public health perspective, for an ordinary person just going through life, is a gift. 

BUT, and I know it's part my high ACE score, I don't trust systems NEAR ENOUGH to advise or encourage parents to share that info. NO WAY! I know, even when going through the adoption process, that family history and family background and upbringing can be used against people in determining who is even eligible or allowed to adopt. I know that systems have unchecked biases, that often the PTSD of women isn't acknowledged, that people with a mental health diagnosis don't get the same quality healthcare, and I worry that those with high ACE scores will be tagged, flagged and that the info. won't always be used in ways that protect families, parents (and therefore kids). 

I think systems have a lot more work to do on being safer for vulnerable and marginalized communities and don't have a great record, to date, on that. I encourage people to share and TALK ACEs if the provider is trusted, but not to fill out forms or checklists, give numbers or data but to keep conversations general. We know so many people are so uncomfortable even talking about ACEs. What people will and will not do with ACE scores if that info. is in systems, isn't something I think it's safe for all people to share. At least not yet. 

What do you think? What do you advise? Do you share your ACE scores with all and has it gone well, been well-received or improved care? I have had ONE AMAZING and great experience with a nurse practitioner, and as an activist, went public with my score but I don't recommend it for all. Do you? 



Original Post

I keep asking why (outside of medical offices) why anyone needs a score. Most know they work with traumatized populations. For those we know it doesn’t matter what the score is, we are trying to heal and build resilience. Doesn’t matter whether a person is a 1 or 10. We our building new brain pathways. I dedicated my training to skills training that works for EVERYONE and you don’t need to know their score. Typing on my phone...or I would go into more detail

I appreciate your comments and concerns, Cissy, as I join you in suspecting (despite miles more legislation on information handling) that we probably don't collectively handle the information we're mining well, and for its most heart-centered, therapeutic/remedial purposes.  I am not at all sure what to do about that, though, since the original point (I believe) was to point towards not only expected health crises that might be mitigated, but also what we might better understand to assist us in helping those with high ACEs to recovery resources and better quality of life, overall. 

Thank you for sharing your valid concern about the potential misuse of ACE scores – and hence the potential for more harm, trauma and stress to vulnerable individuals and communities.

Dr. Nadine Burke Harris’ vision for ACE scores to become part of universal screenings in order to measure, predict, and/or mitigate potential health risks may be part of a Best Practice routine for conscientious and compassionate practitioners, (as well as educators, and policy makers seeking to increase the well being of students and society as a whole) it also holds the potential for misuse or even abuse in the “wrong” hands - increasing stigma and tribal mentality. 

After completing the ACE questionnaire, a nurse friend of mine was questioned by the physician she works for about her score. When she confirmed that it was fairly high she was given a look that conveyed a 'know-it-all' response somewhere between “I thought so” and “that explains a lot”.  Though she brushed off the judgmental nod, she (we) share your bigger concern for systems that could potentially misuse ACE score information. 

Just as high blood pressure or a history of cancer can become a barrier to resources or opportunities - depending on the situation - a high ACE score in isolation can be processed negatively. For the under trained, under educated and/or misinformed about trauma and toxic stress (which is most of us in the general population), a high ACE score could become yet another label – instead of the tool for which it was intended. No matter how significant or important the ACE score or its findings, it is fundamentally a TOOL – one, that without clear guidelines and systems in place (nationwide and worldwide) for its use, holds the potential for misuse and abuse.

I think it's important for people to know about ACEs science, including the ACE Study, the 10 questions and the additional questions that have been added by subsequent ACE studies (racism, bullying, gender discrimination, witnessing violence outside the home, involvement with the foster care system, living in an unsafe neighborhood, losing a parent to deportation, etc.).

Basically, it's a social justice issue.

It's also a health issue. I think it's appropriate for ACE and resilience surveys to be used in health organizations that are integrating trauma-informed and resilience-building practices based on ACEs science for their own organization, their employees, as well as the people they serve. In health, having four ACEs has potentially different consequences than having one ACE, and it's important for people and their health care providers to know this.

I also think it's important for organizations to know the ACEs burden of their  employees. That doesn't mean that employees need to identify their ACEs to the organization. It's better that they do this anonymously, and only if they're educated about ACEs science and the organization starts the journey to becoming self-healing.

I don't think it's necessary for any organization outside health care — whether it's schools, prisons, foster care, etc — to record the ACE scores of its students, prisoners, etc. Again, anonymous surveys, combined with education, will provide individuals with the information they need to start addressing their own ACEs, as well as provide the organization with information about the ACEs burden of the population it's serving or educating.

I agree with Cissy on this point: If an organization is doing an ACE survey (and resilience surveys should be done at the same time), the question for the person participating in the ACE survey to ask those conducting the survey: Is this organization becoming self-healing...i.e., is it taking the steps necessary to educate staff, change policies, etc. Are all staff becoming educated about ACEs science, taking ACE and resilience surveys, and making the necessary changes to become self-healing organizations? If not, don't participate.

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Robin M CoganCheryl MirandaKaren Clemmer (ACEs Connection Staff)Carey S. Sipp (ACEs Connection Staff)