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Why the ACEs Questionnaire Doesn't Accurately Reflect How Trauma Can Impact Someone

From 1995 to 1997, over 17,000 participants from within the Kaiser Permanente organization throughout Southern California underwent one of the most comprehensive research studies ever conducted attempting to link the presence of childhood abuse, neglect, and other trauma with negative health outcomes later in life. The ACEs study, or adverse childhood experiences, determined that there is a direct correlation between childhood trauma and chronic diseases including heart disease, cancer, diabetes, autoimmune diseases of all kinds, as well as a myriad of mental health conditions. The study involved the use of a questionnaire featuring 10 types of childhood trauma identified as most common within the sample community involved in the study. The findings indicated that the higher your ACEs score, meaning the more of these traumas you endured in childhood, the higher your risk for developing disease later in life.

The questions included can be found here.

While the ACEs Study revolutionized the ways in which the medical community viewed the impact of trauma on wellness thereby emphasizing the need for mental health care and better education about trauma amongst those involved with childcare of any kind, there are some limitations to the study and the inventory that need to be addressed in order for the true nature of the impact of trauma during childhood upon health later in life to be adequately understood.

First, the demographics of the community that were interviewed for the initial study were predominantly white middle-class individuals with access to health insurance and therefore proper comprehensive health care. This doesn’t negate the study per se, but it does limit its usefulness on a broader scale. If nothing else, I believe it actually underestimates the cause and effect of childhood trauma on health later in life, particularly among minority populations which tend to be poorer, underinsured, and more vulnerable to innumerable stressors.

Second, the original inventory of questions fails to take into account a myriad of traumas that are equally valid and likely just as damaging over time. These include but are not limited to: racial trauma, homophobia, transphobia, xenophobia, war, poverty, immigration, bullying, medical trauma, religious and spiritual trauma, intergenerational trauma, ableism, and pandemics. Some of these may be societal in nature but not only do they affect a child’s sense of security and safety, but they can also severely affect a caregiver’s stress and ability to be attuned and functional.

Third, the questions are not specific enough to address more nuanced types of abuse and neglect, such as emotional incest and attachment disruptions. There is more and more evidence that indicates that even when from the outside children appear to be cared for — i.e., have housing, food, a good education, and parents who appear to be involved — what children actually experience behind closed doors can be far from idyllic. The ambiguity of this kind of attachment injury is difficult for children to recognize and often behavioral issues that arise from this type of trauma is designated as something stemming from within the child, like attention-sensitive/hyperactivity disorder (ADHD) or disruptive mood dysregulation disorder. In her book “Mother Hunger,” Kelly McDaniel astutely points out that the ACEs questionnaire fails to include “having an abusive or frightening mother” but does include witnessing a mother being abused which perpetuates a narrative that mothers are always victims and never the perpetrators of abuse. Additionally, it fails to recognize that men can be victims as well, which only reinforces a patriarchal view of the world where men are the aggressors and women the prey. My personal history of childhood covert incest and emotional neglect from my mother is a perfect example of how my experience isn’t encompassed by the inventory. I score a 5 out of 10, which is high enough, but my more impactful trauma isn’t reflected in the inventory as it was originally conceived.

There is no way a questionnaire designed for widespread use by professionals across various sectors could adequately encompass the seemingly innumerable permutations that trauma takes. But, I do think it is time for an overhaul that is somewhat more involved and incorporates both less obvious types of abuse or neglect as well as societal ones. Too many of us struggle unnecessarily with undiagnosed trauma and chronic illness that doesn’t appear to have a source because we simply don’t have the vocabulary or awareness of how what we experienced as children was in fact trauma. This can lead to self-blame, comparative suffering, and loss of hope. If your trauma doesn’t fit the criteria of the ACEs questionnaire, that doesn’t mean it didn’t happen, that it wasn’t damaging, that it wasn’t bad enough to get help, or that you are overreacting. In the grand scheme of the developing world of a more holistic approach to trauma-informed medical treatment, we are still within the infancy of not just understanding how what happened to us and/or what we didn’t get affects us on a biological level, but the degree to which childhood trauma on both a micro and macro level determine our mental and physical wellness throughout our lifespans.

Photo by Annie Spratt on Unsplash