I recently analyzed the data from the 10-item ACE survey (adverse childhood experiences) on my blog. This blog summarizes the most striking finding about the 2 most common ACEs and additional surprises. The new ACE survey is now available in a format that asks you to register so it’s possible to better understand who is taking the ACE survey here and potential links to chronic illnesses and other health conditions. I’ve also added companion surveys that ask about the kinds of experiences that are missing in the 10 ACEs – you’ll find those at the bottom of this post.
Here’s the updated ACEs survey with the original 10 questions to get your score and your parents’ scores to look at Multigenerational ACEs:
I was surprised and moved by the observations of the ACE survey on my blog, which I describe here with charts to make the information easier to take in. This includes very high scores in general, and for 2 ACEs in particular. There are also intriguing questions raised about WHO took these ACE surveys. I have included 3 short surveys that you can help me with in hopes we might be able to interpret this data more accurately.
What are ACEs
As a refresher for many of you and new information for some, Adverse Childhood Experiences (ACEs) refer to 10 types of trauma occurring before your 18th birthday.
You calculate your ACE score by adding 1 point for each ACE you experienced, regardless of how many times you may have experienced it. Your ACE score can be as high as 10. ACEs were first studied and published in 1998 and found that the higher your ACE score, the higher the risk for chronic disease, mental health conditions and more, as briefly presented below. There are also positive childhood experiences that help counteract the effects of ACEs, such as a supportive, nurturing relationship with someone even if it is not family, having one or more friends, having a routine at home and for school, and more.
These are the 10 ACEs:
- Emotional / Psychological Abuse
- Physical Abuse
- Sexual Abuse
- Emotional Neglect
- Physical Neglect
- Domestic Violence in the home
- Losing a Parent for any reason (divorce, separation, death, deportation,…)
- Mental illness in the household
- Having someone in the household incarcerated / in jail
- Substance abuse by someone in the household
A Lot More ACEs Than the General Population
The graph below represents ACE scores for 3843 people who have taken the ACE survey so far on this blog. I am struck by how long most of the bars are.
The length of the bars, in other words, show that most people experienced 2, 3, 4 and more ACEs. As you will see later, these ACE scores are very much higher than ACE scores in the general population.
68% Experienced 4 or more ACEs
The chart above shows blog responders in yellow with lower ACE scores of 0, 1 and 2 than others (from research studies from 2020 and 2023, and the original ACE study by Felitti et al. in 1998).
Most striking is how large the yellow column on the right is. The shows that 68% of blog ACE survey takers had an ACE score of 4 or more. It is also striking that this number is 4 times as large as for people in other ACE studies where 13% and 16% had 4 or more ACEs.
An ACE score of 4 or more increases biological and behavioral survival coping mechanisms such as:
- emphysema or chronic bronchitis risk is increased by nearly 400 percent
- suicide is increased by 1200 percent
- chances of being a smoker are increased two-fold
- risk of overusing alcohol is seven times higher than a person with an ACE of zero
The 2 Most Common ACEs
In looking at the graph below, which represents the different kinds of ACEs, I am again struck by how long most of the bars are. In other words, so many people experienced a lot of these different kinds of ACEs. If you hover over a bar it will show you the number of people who experienced that particular kind of ACEs. It is sobering.
In the graph above, we see all 3843 responses so far on the 10-item ACEs questions. The two longest bars, which you can hover over to see the numbers, are for the following 2 ACEs:
- Emotional neglect (2657) or 69%
- Psychological abuse (2610) or 68%
These two ACEs are about our experiences in our earliest relationships.
This finding is consistent with what I see as the most common and underestimated category of adversity in people living with chronic illness: Adverse Childhood Relationship Experiences (ACREs).
I think of these as invisible ACEs. As many of you know, we also refer to ACREs as complex PTSD, developmental wounds and developmental trauma.
Not only are these two the most common in the blog’s survey responses, but given how high the numbers are (over 2600 each for emotional neglect and also for emotional / psychological abuse), a significant number of people who have experienced one of these ACEs have also likely experienced the other.
Emotional neglect was not often measured in other studies, in part because it was added to the ACE questions after the initial studies. The blog survey responses may therefore be providing valuable new information.
Who Took This Blog’s ACE Survey?
An important question I am unable to answer is who has been taking this ACE survey on the blog.
Because the ACE survey is available without needing to sign in, I don’t have any results except the types of ACEs and ACE scores.
Are the survey takers blog subscribers? Are survey takers people with chronic illness? Are they individuals already interested in and informed or learning about trauma?
In other words, are survey responders on this blog more likely to have a chronic illness and to perhaps better recognize their histories of trauma that might be more commonly overlooked without this understanding? This could be the case since this is a chronic illness and trauma blog.
But the question remains – who has been taking the blog’s ACE survey?
This lack of detail means that the observations in this post are guesses – very intriguing guesses given how much higher the ACE numbers are compared to other ACE survey studies, which are often although not always from populations that are mostly white, heterosexual and middle class. These groups generally have the lowest ACE scores.
62 Responses to “Who Took the ACE Survey?”
62 of you answered my short surveys to help learn more about who might have taken the ACEs survey on my blog. You can see the results graphs below. Half had a chronic illness. What’s also interesting is that no one checked the box “I am in good health,” suggesting that everyone who took the ACE survey on this blog may have had some kind of chronic health condition. This would differentiate the results of our ACE responses from most ACE studies, which are not focused on people with chronic health conditions.
Health Conditions
July 2024: Updated Surveys are now on the Blog
This initial look at the blog’s ACE survey data, which is consistently higher than found in published ACE studies, suggests it will be interesting to learn more from a population in which many if not most people live with one or more chronic health conditions.
I have created new surveys that ask you to register.
This makes it possible to link the chronic illnesses and other health conditions you have with the “doses” or scores of different types of adversity.
The Health Conditions survey is the place where you can now add your health conditions from a drop down list.
Those of you who add your state of health and any health conditions in this survey AND who also take the ACE survey, as one example, make it possible to better understand potential connections with state of health or chronic health conditions and their link to ACEs. This includes helping assess whether emotional neglect and psychological abuse are higher in individuals with chronic illnesses.
Additional companion surveys to ACEs:
- the new Multigenerational ACEs Survey (get your score and your parents’)
- the ACEs Plus 77 survey, with 77 additional adverse events in childhood
- the ABEs survey for babyhood events before your 3rd birthday
- the ACREs survey on attachment trauma, also known as developmental trauma (adverse childhood relationship experiences)
Related Posts
Calculate your ACE Score is a post introducing ACEs research in chronic illness
Get the ACE Fact Sheets to educate your doctor
See results from other Blog Surveys
References
Dube, S. R., D. Fairweather, W. S. Pearson, V. J. Felitti, R. F. Anda and J. B. Croft (2009). “Cumulative childhood stress and autoimmune diseases in adults.” Psychosom Med 71(2): 243-250.
Felitti, V. J., R. F. Anda, D. Nordenberg, D. F. Williamson, A. M. Spitz, V. Edwards, M. P. Koss and J. S. Marks (1998). “Relationship of childhood abuse and household dysfunction to many of the leading causes of death in adults. The Adverse Childhood Experiences (ACE) Study.” Am J Prev Med 14(4): 245-258.
Giano, Z., D. L. Wheeler and R. D. Hubach (2020). “The frequencies and disparities of adverse childhood experiences in the U.S.” BMC Public Health 20(1): 1327.
Madigan, S., A. A. Deneault, N. Racine, J. Park, R. Thiemann, J. Zhu, G. Dimitropoulos, T. Williamson, P. Fearon, J. M. Cénat, S. McDonald, C. Devereux and R. D. Neville (2023). “Adverse childhood experiences: a meta-analysis of prevalence and moderators among half a million adults in 206 studies.” World Psychiatry 22(3): 463-471.
Merrick, M. T., D. C. Ford, K. A. Ports and A. S. Guinn (2018). “Prevalence of Adverse Childhood Experiences From the 2011-2014 Behavioral Risk Factor Surveillance System in 23 States.” JAMA Pediatr 172(11): 1038-1044.
Sacks, V. and D. Murphey (2018). The prevalence of adverse childhood experiences, nationally, by state, and by race or ethnicity, Child Trends ACEs Research in US Statistics.
Even though I believe in the mind-body connection and the concepts around wholeness …..as relates to the whole person, I have some skepticism with just the ACE scores, and like you believe more information is necessary! Pain is carried in the body and inflammation is involved, both good and otherwise! Root causes are difficult to “up root” due to attachment! I say this because I have an autoimmune condition and it is my belief it was triggered from the stress I endured as a mother, spouse, and more! These I attribute to societal expectations to which one is conditioned over time to respond with care and compassion! I am not a medical professional yet have an interest in having good health and well being! It is my desire that others be well and healthy too!
Hi Jean,
Yes, the ACE survey is just the tip of the iceberg and there are so many other factors involved that are helpful to understand – and track. I agree and I think the attachment piece is much more important than is recognized. One of the questions I have is how much are our responses to stress as adults (including the development of chronic illnesses like autoimmune conditions) linked to stress responses that are easier to stimulate or strengthen because they were initiated when we were young – in the womb, as toddlers and children. Adding societal expectations of motherhood and so much more adds a whole extra layer, doesn’t it? Here’s to supporting good health and wellbeing! Thanks for writing!
I can‘t remember if I found the ACE test on your website, but I do recognize myself in the description for people who have a high ACE score and a high score on emotional neglect.
Thank you for sharing your information Anne, including about relating to emotional neglect, which is often difficult to ascertain.
So happy you’re back and sharing your amazing work.
“growing attachment and attunement receptors” This is interesting.
Could you elaborate?
Only recently, I’ve realized that I’m less hypervigilant after years of being in a state of waiting for someone to attack me.
My right eye which was stuck in a kind of looking behind for sexual predators (my cousin and uncle ) had kept me hypervigilant. Then there was my fault-finding father who expected me to make no mistakes.
Ugh, the horrible shite we have to process and release is so exhausting.
But I live in the hope of getting better, No doubt, my mind and body have improved quite a bit since I began my healing journey nearly 6 years ago.
Hello Cheryl, so nice to “see you” after all this time :-).
re attachment and attunement receptors – I’ve not been a mother and I have long worked on my own experiences of relative emotional neglect. I have found the effects of this to be a sense of relative freeze or “numbness” in connecting and attaching to people in my adult life. Finding myself deeply interested in making eye contact with the kitten, watching with care for what it seemed to want and like, and then experiencing tremendous pleasure in meeting those needs as evidence by the feedback of it enjoying playing with me – were all somewhat new experiences for me. I haven’t had a lot of impulse to “play” as an adult, and this felt like a corrective experience. It felt as though I was accessing an innate capacity for connection, attunement, attachment, bonding that we all have and I know about very well, and that has perhaps been frozen / immobilized / covered over. Hence the association with receptors :-)
Congratulations on this sense of less hypervigilance. That sounds really significant. The experience with your right eye sounds so clear and intriguing and fitting within the context you give it.
I get exhausted with all the processing that continues too! And then I notice an improvement, like your description of less hypervigilance, and it makes all the work feel easier to keep doing.
Thank you for writing! It’s nice to reconnect
Veronique
Thanks for the explanation.
I too am slowly overcoming my hypervigilance of the past to be attentional to people I’m interacting in the present.
Hi again Veronique! Your work is so inspiring, thank you so much. Something I have thought about is including prenatal stress as part of the ACES. The mother’s stress as well as any physical difficulties. I would be interested to know more about that as well as seeing inter generational trauma in ACES.
Hello again Elaine! I agree with your suggestion for including events linked to prenatal stress and events as risk factors different from ACEs that are also risk factors for chronic illness and mental health conditions (and more).
The research data for that is so large and significant, and the types of adversity so unique for that time period, that I created a new group. I based the name on ACEs and called these adverse babyhood experiences (ABEs). ABEs include events beginning before conception for the baby as well as for the parents, until the child’s 3rd birthday. See my book-long Guide to ABEs, with 10 categories, and a downloadable PDF. I published a journal article introducing this as well.
And I created a group called Adverse Multigenerational Experiences (AMEs) because this, too, is important and unique from ACEs. See my summary of 8 categories of trauma in my guide called Planting Seeds.