Missing ACEs represent adverse experiences not included in the 10-item Adverse Childhood Experiences (ACE). As many of you know, the ACE studies were first published in 1998 to assess effects of trauma before your 18th birthday. Missing ACEs highlight why it can be so challenging, time-consuming and effortful to heal as an adult.
I’ve developed new surveys to address Missing ACEs. These new surveys represent other types of adverse experiences that you, as blog readers, and others have noted are missing from the 10 ACE questions. Here are the 5 Companion Surveys that will help you identify Missing ACEs and gain insights into your experiences. These missing ACE surveys address the kinds of additional but less well-known events that can impact our health, our life trajectories and our quality of life.
The Power of the Original ACE Studies
You may be familiar with the fact that the hundreds of ACE studies conducted around the globe since 1998 have identified adversity as a powerful and vastly underestimated risk factor for chronic illness and mental health conditions. The total yearly estimated cost of the effects attributable to ACEs has been estimated at $748 billion in North America alone. “More than 75% of these costs arose in individuals with two or more ACEs.” (Bellis et al, 2019)
The effects of the 10 specific adverse experiences have provided a streamlined, quick-to-take, efficient approach to identify what is turning out to be the tip of a paradigm-shifting life-changing iceberg.
The results have begun informing the world about the impact of adversity. The knowledge is gradually replacing perspectives of blame with the understanding that life experiences influence our biology and how our genes function. The research also demonstrates how addictions reflect self-soothing behaviors to manage overwhelming feelings when there has been insufficient support, rather than “weakness of character.”
ACEs and related research highlight the value of trauma-informed approaches across the board, from medical care to education to the criminal justice system. The data provide a wealth of opportunities for primary prevention (preventing these traumas from happening in the first place) and secondary prevention (identifying early symptoms and biomarkers we already know about and new ones to come in order to reduce, slow or prevent progression to chronic health and other conditions).
Here are the 5 Missing ACEs Surveys:
Survey 1. ACEs and Multigenerational ACEs
** I’ll be presenting results from this ACE survey at a conference in September **
This new ACE survey contains the original 10 questions to get your ACE score. I’ve recently added the role of multigenerational trauma to this particular survey to provide the opportunity to assess your biological parents’ ACE scores.
We know now that unresolved trauma can contribute to adverse experiences in childrens’ lives through the transmission of epigenetic changes from a parent to a child. Effects of unresolved trauma can also be conveyed through parenting behaviors and attachment styles, which are influenced by life experiences too. I will create a separate and more detailed survey for Adverse Multigenerational Experiences (AMEs) in the future.
I invite you to take this ACEs survey, even if you’ve taken it before, to contribute to a better understanding of ACEs in chronic illness. This will also help clarify results from the previous ACE study on my blog, when I was unable to link responses to any chronic illnesses and other health conditions you may have. You are invited to take this survey even if you do not have a chronic illness as this will help better understand influences of ACEs and other health conditions).
The Other Missing ACEs Surveys
Missing ACEs provide data, validation and a broader context to deepen our understanding of trauma, including your understanding.
Missing ACEs can help you refine your work and add tools to heal different kinds of events and experiences that may be influencing symptoms and flares.
Take your time, go at your pace. The role of missing ACEs has been such an important issue for so many of you that I have included all the Missing ACEs surveys here in one post. Take your time and see which survey(s) you feel drawn to taking. Take them at a pace that works for you.
Research findings support the new Missing ACE Surveys. I have developed these new surveys, with the 5th in the works, to broaden our understanding of adversity in childhood and its effects. Each of the new surveys builds on bodies of research separate from ACEs suggesting similar effects on risk for chronic illness, mental illness and addictions. These studies are less well known yet many are solid in their findings. These missing ACEs have often been studied in “silos” such as in studies of one particular disease and are not commonly known in other diseases or recognized yet in clinical medicine. Most of these missing types of adversity have not been consistently studied in association with risk for chronic illness.
Each new survey provides a score. Like the surveys, these scores are new and it is not yet known what the meaning of these scores are nor how they will compare to other people’s experiences. That’s where your input from taking these surveys comes in. Your scores are based on “dose,” which has been identified in the ACE studies and other trauma research as an important indicator of past experiences of adversity. This will give us a foundation on which to learn more about the impact of these missing ACEs.
Survey 2. ACEs + 107 Additional ACEs
The Adverse Childhood Experiences Plus (ACEs Plus 107)
The ACEs Plus survey adds 107 more specific events occurring before your 18th birthday that reflect additional adverse experiences. The ACEs + 107 addresses the most common concern among you, which is that additional childhood events are so common, have often played an important role in your own life, and have been so overlooked. The number of additional events, and hence the number 107, will likely increase over time as I add new events based on your input.
Survey 3. ACREs are Invisible ACEs
Adverse Childhood Relationship Experiences are Invisible ACEs.
Adverse childhood relationship experiences (ACREs), also known as developmental trauma or attachment trauma, are the source of Complex PTSD.
The 10-item original ACE questionnaire includes two questions that represent ACREs and that have been extraordinarily high in the ACE survey results on this blog compared with the ACE results for general populations. These represent developmental trauma:
- Emotional neglect
- Emotional abuse
Adverse childhood relationship experiences expand on these two ACEs. ACREs are among the most subtle, pervasive and easy to overlook form of trauma we experience. I was surprised at how many items went into this survey. Like the others, there will likely be more questions added over time based on your input. As with the other surveys, you will be able to revisit and update your survey if you gain new awarenesses after taking it or want to make changes.
Survey 4. ABEs: Babyhood ACEs
Adverse Babyhood Experiences (ABEs)
Some of you were born prematurely, spent time in an incubator, were the result of an unwanted pregnancy, weighed only 3 or 4 pounds at birth even though you were full term, were born cesarean or with forceps, or were the successful outcome following years of dedication your parents had in conceiving you that may have needed extra support such as IVF. These are just a few of the kinds of experiences beginning prior to conception until your 3rd birthday that represent an entirely different category of missing ACEs. Adverse Babyhood Experiences (ABEs) include adverse experiences your biological parents experienced during this time period because of how deeply they can affect a parent’s feelings, parenting behaviors and the family system. Parent ABEs are a component of adverse multigenerational experiences that are included in this survey.
Here are initial results of the ABE survey results Part I and Part II.
Survey 5. AIEs: Discrimination Survey to Come
Adverse Institutional Experiences (AIEs)
The role of discrimination, marginalization and being treated unfairly is starting to be examined and showing that it increases risk for chronic illness and physical health issues. There are a small number of studies in this field that I know of so far, including Harvard’s Dr. David Williams’ Every-day Discrimination Scale. Some of you have taken the initial Adverse Institutional Experiences (AIEs) in the first Background Survey. I’ve recently updated the Background survey and renamed it “The Health Conditions Survey” to have a specific and unique place where you can add your health conditions. The AIE questions about the role of discrimination are evolving into their own, much more detailed survey and benefits from the responses you provided. The AIE Survey will include a section on missing ACEs in childhood. I’ll add it here when it becomes available.
Survey 6: *** Your Health Conditions Survey ***
If you haven’t taken this survey already it is one of the most important because it asks about your state of health – whether you are in good health or have / have had a chronic illness or other chronic physical or emotional health condition(s).
A primary goal of these Missing ACEs and related surveys is to compare “dose of adversity” as they relate to differences in states of health. For example, are the less common autoimmune diseases, which have not been studied with respect to the role of trauma as far as I’ve been able to find, associated with trauma as others are? Is this the case for other chronic physical health conditions, many of which have not been specifically studied regarding the role of adversity?
The Health Conditions survey was originally a part of the Background Survey, which I have since updated. It now focuses entirely on the now close-to-800 health conditions you can select from and has been updated with 200 more conditions including mental health and cancer from the first time it was published in May 2024.
If you took this survey in May or have recommended I add any health conditions, consider updating it using the link above to see if there are conditions you want to add.
Your Input: Broadening Knowledge for Us All
After taking a survey you will receive an email confirmation with your score, links to download your PDF Report and to see results graphs, which include context for your score and references.
Your input will help deepen what you know about your health and contributing risk factors. It will help you consider new options and tools that offer support for your healing journey.
By taking these surveys, whether you are in good health or have poor health, you will help further our understanding of trauma and what we con do about it – as individuals and as a society. I’ll share your results anonymously here on the blog as a place to start. I look forward to incorporating your anonymous results in presentations, webinars, podcasts and teaching I do. And we’ll see where else the I can share your input, such as in journal articles I hope to publish in medical journals.
The Survey Names Build on ACEs
I’ve coined the names for each of these new surveys I’ve created as a way to build on the findings of the Adverse Childhood Experiences and on name recognition, which so aptly describes the issues being evaluated. I asked Dr. Vincent Felitti, co-investigator of the first ACE study, about my naming the first new survey (ABEs and Babyhood events) in this way and he gave me his full support, stating there were no concerns since this was different and differently named from the original ACE survey.
Welcome to the Missing ACEs Surveys.
I was pleased to see that you included newborn circumcision in your ABE checklist. About three-fourths of American men will check this box. Circumcision has life-long consequences beyond the initial trauma including erectile dysfunction, meatal stenosis, and a host of sexual and psychological problems. Forcible foreskin retraction is another common genital injury and trauma for boys.
https://www.researchgate.net/publication/367351178_Adverse_Childhood_Experiences_Dysfunctional_Households_and_Circumcision
Hi Dan,
Yes, circumcision is an adverse experience. I had to learn how to do circumcisions when I trained as a family practice physician 30 years ago. I knew nothing about trauma then but somatically and emotionally it didn’t feel good and I felt it was something that was not as benign as parents and doctors and others are led to believe. This includes the whole process around it as a medical procedure.
Since I didn’t have much choice at the time I decided I could help reduce negative effects at least somewhat by learning how to best minimize or alleviate pain with local anesthetic, which not everyone used and which is another indicator of our ignorance. What I saw over the years was that most little boys “fell asleep” during the actual procedure and stayed asleep afterwards, which I now recognize as very likely a state of freeze. That alone tells us the experience is traumatic since freeze is a hallmark trigger for trauma and is induced by negative experiences occurring during a state of relative helplessness.
A midwife friend of mine who recognized the trauma component told me that one thing I could do to help mitigate some of the effects was to hold the little guys afterwards and tell them that it was over. I did that with every one. Performing circs was one of the things I was happiest to leave behind when I left medicine in 1998.
Thanks for sharing your article. You were working on this paper when we communicated 2 years ago and I’ve just downloaded the citation and paper into my database. I’ve read the abstract and look forward to learning more.
Being naturally curious, I can’t help but wonder what conception and in utero experiences might qualify as adverse. I can already think of a few. The Dutch Hunger studies immediately come to mind . . . https://www.pnas.org/doi/full/10.1073/pnas.1012911107
Hi Mark,
Yes indeed! The Developmental Origins of Health and Disease (DOHaD) research, continued since Barker with researchers such as Suzanne King during the Quebec IceStorm and other events, are one of the core areas of research supporting the ABEs survey. My favorite Barker research is a 2011 paper by Kara Calkins, MD* and Sherin U. Devaskar, MD** at UCLA, both pediatricians. Given your curiosity I would invite you to see for yourself by taking the Adverse Babyhood Experiences (ABEs) Survey. IF the fact that we know each other makes you prefer anonymity with your responses you can use a pseudonym when you register. The ABEs survey score includes indicators of prenatal stress.