If you have a chronic illness, research showing links between adverse childhood experiences (ACEs) and chronic illness may help begin to make sense of your symptoms.
They explain why it’s not your fault.
And why it’s not in your head.
In this post you will be able to calculate your ACE score and see graphs of your anonymous results, get explanations of what ACEs are and what your ACE score means, download ACE fact sheets to give your doctors and other health care professionals, and learn how ACEs are more common than we realize, highlighted by an example from the 2014 movie “Boyhood.”
You can watch videos from two of the most compassionate doctors I’ve ever heard (the two who created the ACE questionnaire) and learn about the specific research linking adverse childhood experiences and chronic illness.
What’s also important to know is that the science linking adverse childhood experiences and chronic illness offers vital new tools and resources for working with symptoms, triggers, flare-ups and other common experiences associated with chronic illness.
They may also help explain chronic symptoms that have gone without explanation or understanding.
***Free eBook5: ACEs
This free ebook comes in PDF and kindle formats. It contains this post with 2 other blog posts and the ACE questionnaire. The PDF includes the two ACE Fact Sheets (they do not format well for the kindle version).
What’s Your ACE Score?
In the 1990s Dr. Felitti collaborated with medical epidemiologist Dr. Robert Anda from the Centers for Disease Control in putting together the ACE study (1)Felitti, V.J., et al., Relationship of childhood abuse and household dysfunction to many of the leading causes of death in adults. The Adverse Childhood Experiences (ACE) Study [see comments]. Am J Prev Med, 1998. 14(4): p. 245-58. Full Text. After detailed research Anda chose 7 areas of childhood trauma to examine and soon added 3 more. He drew from areas for which national programs were being created at the time (2)Huff Post Part Three.
Each of the 10 ACE questions receiving a yes gets 1 point, even if you have had more than one exposure or many years of exposure to a particular type of ACE. This gives a maximum of up to 10 points.
All the questions refer to events that occurred before the age of 18.
The ACE questionnaire is not a test. It is a tool that will give you an idea of a few kinds of adverse experiences or traumas that have been found to increase risk for chronic illness and other health conditions, among other difficulties.
Calculate Your ACE Score with the ACE Questionnaire
Below is the original ACE questionnaire, developed and first studied in 1998 by doctors Vincent Felitti from Kaiser and Dr. Robert Anda at the Centers for Disease Control (CDC).
* Your responses are anonymous and are also reflected in the identical questionnaire and graph on the ACEs Fact Sheet blog post.
You can download free ACEs fact sheets summarizing chronic illnesses and other health conditions affected by ACEs below. These include the ACE questionnaire and can be used to inform or educate family members, colleagues, your doctor(s) and others. A full page of references are included. Or just directly download the ACE questionnaire here.
***2 Free ACE Fact Sheets
What Your ACE Score Means
What they saw was that experiences like these are staggeringly common (4)Felitti 1998: Full Text. These results have been replicated throughout the U.S. and around the world in the past 20 years since the first ACE study was published (5)Hughes, K., et al. (2017). “The effect of multiple adverse childhood experiences on health: a systematic review and meta-analysis.” Lancet Public Health 2(8): e356-e366.
- 50% of adults in the first ACE study and later studies have experienced one or more ACEs
- 1 person in 4 grew up in a household with a person addicted to substances such as alcohol or recreational drugs
- 1 in 10 grew up witnessing domestic violence
- 2 in 10 individuals here in the United States have been sexually abused
- 3 in 10 have been physically abused.
- 1 in 6 has a score of 4 or more
- People with a score of 6 or more, like Mason, have a life expectancy that is 20 years shorter than people with no ACEs.
- Participants with these scores are not just the poor or the disenfranchised. The original study participants were a lot like Mason and many were even better off. They were 80% white (including Latino), 10% black, and 10% Asian. Most were middle class, college educated and had good jobs and health insurance.
The percentage of individuals who have experienced ACEs like Mason from the movie Boyhood (I’ll tell you about his story below) is shocking.
So is the link between adverse childhood experiences and chronic illness, which I’ll describe after Mason’s story.
You can listen to Dr. Felitti’s description of the questions in this 10 minute video below and the degree of compassion he expresses about what the research has shown us.
What are Adverse Childhood Experiences?
The Adverse Childhood Experiences (ACE) research refers to what now involve hundreds if not thousands of studies in the U.S. and around the world (6)Hughes, K., et al. (2017). “The effect of multiple adverse childhood experiences on health: a systematic review and meta-analysis.” Lancet Public Health 2(8): e356-e366 conducted in the past 25 years. Results have been reproduced in over 35 states and in Washington DC. They explore the relationship between difficult childhood events and chronic behavioral, mental and physical health problems in adult life.
An informative 3 Part series on ACEs in the Huffington Post calls it the largest, most important public health study you never heard of (7)Stevens, J.E., Part One, (8)Stevens, J.E., Part Two, (9)Stevens, J.E., Part Three, (10)The author’s blog is a source for up to date information about ACEs, called ACEStooHigh.
Despite the overwhelming clarity of the findings, the large number of participants (17,000) and ongoing findings with existing patients; despite the study being both retrospective (getting information using surveys of participants’ childhood experiences) and prospective (following the first group of 17,000 participants and 450,000 others now for 15 years at Felitti’s clinic), the results have largely been met by the medical community with silence (Huff Post series, Part Two) (11)as mentioned in the video clip above and updated to 450,000 in a personal communication with Dr. Felitti in April 2018.
Dr. Vincent Felitti, chief of the Department of Preventive Medicine at Kaiser Permanente, first came upon the link between adverse childhood experiences and chronic illness as well as other forms of reduced health in adults by accident. In the 1980s he was trying to understand the 50% dropout rate in his weight loss clinic and decided to interview people to learn why. After weeks of interviews with people who had left the program he misspoke one day. He was completely surprised by the answer (Huff Post series, Part One):
“Instead of asking, “How old were you when you were first sexually active,” I asked, “How much did you weigh when you were first sexually active?’ The patient, a woman, answered, ‘Forty pounds.'” He didn’t understand what he was hearing. He misspoke the question again. She gave the same answer, burst into tears and added, “It was when I was four years old, with my father.”
Felitti and his colleagues discovered that more than 50% of the people who were struggling with being overweight had a history of sexual abuse, molestation and / or rape in childhood. They were greatly disturbed by these overwhelmingly common findings and the fact that no one in the medical community knew about it – or believed them when they presented their research.
The Huffington Post articles describe the process that lead to the first ACE study, which found that traumatic events in childhood greatly increased risk for all kinds of chronic health problems later in life, from diabetes, stroke, cancer, being overweight, heart disease and chronic lung disease to substance abuse and other addictions, to depression, anxiety and attempted suicide.
An example of ACEs in The Movie “Boyhood”
The Oscar-nominated movie Boyhood (13)more on wiki received great acclaim for the daring risks taken by filming it over a 12 year period. I loved seeing the main character, Mason, come of age. But in spite of this element, I found it painful to watch a child growing up in a troubled household and couldn’t understand why people liked it so much (14)Bob Cesca presents a witty summary, “It’s Okay If You Didn’t Like ‘Boyhood’” that pretty much sums up all the other reasons I didn’t like it.
In the opening scene we meet 6-year-old Mason some time after his mother Olivia has separated from his free-wheeling, irresponsible, sometime-musician father. Over time, his parents make some important life changes. She trains as a psychologist and makes a career for herself. He maintains a relationship with his kids and eventually remarries, although he feels constrained in life. Olivia’s 2nd and 3rd marriages are both to alcoholics. Step-dad #1 has outbursts of rage and we (and the kids) come upon Olivia crying as she lies on the garage floor at one point, with the implication that she’s been physically assaulted and knocked down by her husband. In the end, Mason heads to college and Olivia is left with a feeling of terrible empty meaninglessness in her life.
Mason Has an ACE Score of 6
Based on the ACE questionnaire, Mason has an ACE score of 6:
- Psychological Abuse (did a parent or other adult in the household often or very often…act in a way that made you afraid that you might be physically hurt?)
- Emotional Neglect (did you often or very often feel that your family didn’t look out for each other, feel close to each other, or support each other?)
- Loss of a Parent (Mason lived through 3 divorces in childhood, although together they still count as 1 point)
- Mother Treated Violently (by step-dad #1 ie: domestic violence)
- Substance Abuse (step-dad #1 and step-dad #2)
- Mental Illness (any one or all of Mason’s 4 parents may have met criteria for a mental illness such as depression or PTSD (step-dad #2 was also an Iraqi war veteran)
12.5% of the U.S. population has an ACE score of 6 or higher.
Movie reviews and commenters frequently describe an appreciation for how Mason survives his difficult childhood through “resilience and adaptability” and how they liked seeing him make it into adulthood intact.
Ethan Hawke, who plays Mason’s father and who is both divorced and the child of divorced parents in his personal life (15)loss of a parent from divorce or separation is one of the ACEs and gives him an ACE score of at least one from his childhood. It also gives his children an ACE score of 1 since he is divorced as well, tells Charlie Rose in an interview that he related to the way this movie normalizes the fact that we all have secrets.
For Hawke, Boyhood conveys the message that coming from a broken home doesn’t mean there’s something wrong with you. Instead, he finds that it helps you see how no one really has a normal family.
I agree that we are not what happened to us.
Mason’s life is common in our culture, but that does not actually make it “normal.” Nor does his apparent resilience mean that he has fully escaped potential long-term adverse effects.
The ACE studies show us that Mason is actually at high risk of having many difficulties in his adult life, including being at increased risk of developing a chronic illness, dying at a much younger age than his peers who have lower scores, being hospitalized for an autoimmune disease, being depressed, and having difficulties of his own with alcohol or other addictions, among other effects.
We are developing helpful tools for addressing the effects of trauma as well as for preventing many kinds of trauma.
For a powerful example at the community level, see the 2016 trio of articles in the NYT about the inexpensive implementation of “trauma-informed” practices in a few small towns and the tremendous impact early intervention has had on community life, levels of violence, teen pregnancy, suicide rates and school attendance.
Such approaches also contribute to reducing risk for the effects that often show up much later, including chronic illness in adulthood.
As we get better at recognizing trauma in all the different ways it can show up, we can begin to better work with it, including as a way to improve health and symptoms in those of us living with chronic illness.
The World is Beginning to “Get It” About ACEs
We now have incontrovertible evidence linking adverse childhood experiences and chronic illness.
The Adverse Childhood Experiences (ACE) studies are being replicated and increasingly mentioned around the world. The studies have been discussed on National Public Radio (16)Starecheski, L., Take The ACE Quiz — And Learn What It Does And Doesn’t Mean, in National Public Radio. 2015: Washington, D.C. NPR Science Desk: Shots., (17)Starecheski, L., Can Family Secrets Make You Sick?, in National Public Radio: What Shapes Health. 2015, National Public Radio (NPR): Washington, D.C. NPR Science Desk: Shots, (18)Starecheski, L., 10 Questions Some Doctors Are Afraid To Ask, in National Public Radio: What Shapes Health. 2015, National Public Radio (NPR): Washington, D.C. p. NPR Science Desk: Shots, (19)Starecheski, L., A Sheriff And A Doctor Team Up To Map Childhood Trauma, in National Public Radio: What Shapes Health. 2015, National Public Radio (NPR): Washington, D.C. p. NPR Science Desk: Shots. and other news channels, in The New York Times and Huffington Post. Prince Harry has begun talking about the effects of his mother’s death when he was 12 years old and his family is explaining how it’s time to stop judging mental illness and emotional symptoms. Pediatrician Nadine Burke Harris introduced ACEs in a TED talk (here’s the transcript of her talk) and has a terrific book explaining how ACEs affect our nervous system, immune system and much more. It’s just out in 2108 and is called The Deepest Well. If you read just one book about trauma, that’s the one to get.
ACEs make it likely a person will have at least one physical, one emotional AND one developmental symptom and have a significantly higher need for health and medical care, including emergency care and hospitalizations.
ACEs show, with remarkable clarity, that different types of trauma in early life are important risk factors for poor health in adulthood, including autoimmune and other chronic diseases of all kinds (20)learn more on the ACE website; see findings grouped by category on the CDC’s website.
Links between adverse childhood experiences and chronic illness are what I mainly focus on in this blog and post since links between trauma or adversity and chronic illness is the main focus of my blog.
The higher our ACE scores, the greater our risk of developing a chronic health condition.
ACEs are higher in minority groups (Black, Hispanic, Multiracial, low income, unemployed, gay, bisexual…)
Risk for Chronic Illness is Affected by Our ACE Scores
Felitti and his colleagues’ studies show that childhood trauma is a critical and prominent factor affecting risk for chronic diseases of all kinds.
7 out of the top 10 causes of death in the US are caused by chronic diseases according to the CDC and half of the adults in the US have a chronic illness.
1 in 4 people have two or more chronic health conditions.
Nearly 1 child in 10 is limited by a chronic disease (National Health Council).
Chronic diseases, like childhood trauma, are difficult to see by looking at a person. The website for Invisible Illness Awareness Week states that “96% of people who live with an illness have an illness that is invisible.” Learning to understand the role of trauma in our lives is a way to begin to shed the cloak of invisibility. Acknowledging the difficult events that have happened in our lives, and finding ways to work with them, is how we can become more whole, and begin to come back into the world.
Risk for chronic illness is especially high when a person has experienced 4 or more ACEs. With a score of 4 or more, risk for diabetes goes up 1.6 fold, doubles for cancer and heart disease, and quadruples for chronic lung disease. But even an ACE score of 2 is significant.
Risk for Autoimmune Disease Increases with ACE Scores of 2
Risk for the 80 or more types of autoimmune diseases increases as ACE scores rise.
For every increase in the ACE score of 1 point, risk for developing an autoimmune disease such as type 1 diabetes, lupus, rheumatoid arthritis and many others goes up by 20% (21)Dube, S.R., et al., Cumulative Childhood Stress and Autoimmune Diseases in Adults. Psychosom Med, 2009, 71(2) p. 248; Full Text. An ACE score of only 2 or more increases the chances of being hospitalized for an autoimmune disease by 70 to 80%. Dube and Felitti et al found that:
childhood stressful events may increase ADs (autoimmune diseases) independently as well as amplify the effect of other environmental factors, such as infections.
Chronic Fatigue and Fibromyalgia
While I’ve seen no mention of chronic fatigue specifically in an ACE study yet, other researchers have found higher rates of childhood physical, sexual and emotional abuse in this population (22)Borsini, A., et al., Childhood stressors in the development of fatigue syndromes: a review of the past 20 years of research. Psychol Med, 2013, 44(9): p. 1809-23 as well as links to very early trauma in the field known as developmental programming / fetal origins of adult disease
In these conditions, lowered cortisol is not due to any adrenal or pituitary insufficiency. These changes reflect a plausible early-life adaptation to increase the persistence of active cortisol in liver (to maximize fuel output) and kidney (to increase salt retention) without elevation of circulating levels, thus avoiding their deleterious effects on brain and muscle.
The article has an unfortunate title linking ME/CFS with stress and psychiatric diseases, which I do not find ME/CFS to be, even as it shows that links to such illnesses are biologically based. Yehuda, R. and J. Seckl (2011). “Minireview: Stress-related psychiatric disorders with low cortisol levels: a metabolic hypothesis.” (23)Endocrinology 152(12): 4496-4503.
There are at least 3 research studies showing that ACEs and other adverse events in childhood are risk factors for Fibromyalgia (24)Borsini A, Hepgul N, Mondelli V, et al. Childhood stressors in the development of fatigue syndromes: a review of the past 20 years of research. Psychol Med 2013;44(9):1809-23. doi: 10.1017/S0033291713002468, (25)Olivieri P, Solitar B, Dubois M. Childhood risk factors for developing fibromyalgia. Open access rheumatology : research and reviews 2012;4:109-14. doi: 10.2147/OARRR.S36086, (26)Varinen A, Kosunen E, Mattila K, et al. The relationship between childhood adversities and fibromyalgia in the general population. J Psychosom Res 2017;99:137-42. doi: 10.1016/j.jpsychores.2017.06.011.
To get a quick summary of what the ACE studies are, important facts and stats about ACEs and the questionnaire, you can download one or both ACE fact sheets I’ve created. You can give these to your doctor, teacher, lawyer, friends and family and others or just use it for yourself to know what ACEs mean. You can also learn more in my post about the ACE Fact Sheets to educate your doctor.
ACE Score, Behaviors & Psychological Health
Like family physician Gabor Mate and author Johann Hari, Felitti discovered from his patients that behaviors such as addictions to drugs, food, and alcohol (among others) are ways of coping with overwhelming feelings from unresolved trauma rather than an addiction to a chemical substance (27)Felitti, V.J., Adverse childhood experiences and adult health. Acad Pediatr, 2009. 9(3): p. 131.
Difficult events make us want to keep the door closed to the past (28)Felitti video 10 minute presentation with assembly member Sandre Swanson on prisons and schools but when not resolved, the past influences the present and creates havoc in our lives – including very real, physiological and biological changes that are not about underlying personality or behavioral or psychological problems so commonly associated with our limited general understanding of trauma and PTSD.
Old traumatic events tend to be unrecognized and dismissed by our culture. And they remain grossly underestimated in our medical health care system. The ACE studies give us the information we need to begin to take it seriously for ourselves and for our children.
Recognizing Symptoms of Trauma in Chronic Illness
The findings in the ACE studies reflect patterns commonly seen in trauma of all kinds. These effects are not limited to PTSD but also include the very real physiological, biochemical and nervous system patterns that underlie chronic illnesses of all kinds. For more on the characteristics, see my post that integrates the disparate research into one integrated perspective in The Chronic Illness & Trauma Connection: Summary of the Science.
The Delay Between Trauma and Symptom Onset (Latency Periods)
Some symptoms may be seen immediately or very soon after traumatic events occur, such as in children who experience nightmares, have difficulty concentrating in school or who act out. Chronic physical illness, however, may not manifest for decades. This delay, often referred to as a latency period in the literature, is a large part of why identifying links between trauma and chronic illness have been so under-recognized and so difficult to identify.
The relationship between childhood experiences and adult health status is likely to be overlooked in medical practice because the time delay between exposure during childhood and recognition of health problems in adult medical practice is lengthy (29)Felitti, 1998, p. 256.
The ACE studies underscore the concept that long stretches of time can occur between a traumatic event and the onset of psychological, behavioral or physical symptoms. The average age of study participants was 57 years old (30)Felitti, 1998 and the traumas they divulged on their surveys occurred decades before the onset of their chronic diseases. They had been kept secret out of shame, social taboos and time.
Effects of ACEs Add Up Over Time
Having an ACE score of 4 does not just increase one’s risk 4 fold – it can increase it by much, much more.
A person with a score of 4, for example is 12 times more likely to attempt suicide than a person with a score of 0 (31)Felitti, 1998.
If a person’s score is 6, like Mason’s, the risk of attempted suicide jumps 46 fold. This is an example of how trauma is additive in powerful and unexpected ways.
A second factor in the compounding effects of trauma is that if you are exposed to one adverse childhood event, you are also likely to be exposed to others – 65% to 93% more likely in fact (32)Felitti, 1998. As we see in Boyhood, Mason was not only a witness to domestic violence, he was also exposed to psychological abuse, substance abuse, and divorce. This is not uncommon. A child exposed to domestic violence is 85% more likely to have exposure to at least one other ACE (33)Felitti, 1998.
In contrast to what we might tend to think, Mason has not emerged from his childhood unscathed. In addition to all the other challenges he may face with emotional distress, risk behaviors and chronic physical illness, Mason’s ACE score of 6 is associated with a life expectancy that is shortened by 20 years.
Parental Trauma and Adverse Multigenerational Experiences (AMEs)
The ACE studies indirectly highlight the fact that parents who are abusive or neglectful, who are substance abusers or have mental illness or are incarcerated etc, are very likely trauma survivors themselves.
Such symptoms in parents reflect unresolved trauma.
Such behaviors and symptoms also often serve as coping mechanisms in the face of life events that were too overwhelming to deal with in other ways (34)Felitti, V.J., et al., Obesity: Problem, Solution, or Both? The Permanente Journal, 2010. 14(1): p. 7.
Through detailed calculations, the ACE studies have demonstrated that events that create ACEs in children are the same types of events experienced by their parents in their own childhoods.
More than 50% of risk for violent and abusive behaviors and difficult emotions inflicted by parents on their own children, are attributable to ACEs.
The behavioral, psychological and physical health problems of parents directly affect the health of their children. As seen on the slide above, 52% of adults who are victims or perpetrators of domestic violence (35)see more ACEstooHigh have experienced ACEs in their own childhoods. 65% of adults who self-report to be alcoholics have experienced an ACE. Mason’s parents all are very likely to have high ACE scores themselves.
Trauma in Parents Increases Risk for Trauma in Children
As mentioned above, adults who experienced ACEs in childhood have frequently grown up with parents who were traumatized. This is one way in which trauma can perpetuate its effects over generations.
Rachel Yehuda, Ph.D., is a Professor of Psychiatry and Neuroscience and Director of the Traumatic Stress Studies Division at the Mount Sinai School of Medicine. She has found that children of Holocaust survivors are more vulnerable to posttraumatic stress disorder (PTSD) than kids who grow up with non traumatized parents.
This is true even though both groups of children were exposed to similar numbers and intensity of life events (36)Yehuda, R., et al., Vulnerability to posttraumatic stress disorder in adult offspring of Holocaust survivors. Am J Psychiatry, 1998. 155(9): p. 1163-71..
The Freeze Response and ACEs
Research is ongoing to better understand the role of nervous system changes, immune system responses and other long-term physiological consequences of trauma, looking for the freeze response is another way to understand potential mechanisms.
In one scene in Boyhood, the freeze response is readily visible. Alcoholic step-dad #1 creeps into a rage-filled drinking splurge at dinner time one day. He is itching for a fight. We watch him challenge the kids and Olivia with questions as they try to eat their meals at the dinner table. No one makes eye contact or says a word unless spoken to because any wrong move could escalate his behavior and place someone at risk of physical harm. They are all “frozen.” Olivia is immobilized and unable to protect her children because she too, is at risk of being physically abused by her husband (and already has been). This scene shows us what a freeze response looks like and how it can affect everyone in the family system.
The freeze response is the default mechanism of survival when no other option exists. It is a hallmark of trauma. No one is physically strong enough to fight this big, angry man. No one is going to be able to run or get away or make it out the front door. The freeze response is one of the ways that our nervous systems take on new patterns of functioning. According to Peter Levine and others in the field of trauma therapy (37)see more in the post on Trauma therapy with a Dog Named Kane, it’s what underlies and drives the long-term symptoms that follow trauma.
Here’s a detailed guide about trauma’s effects on genes and the nervous system and how adversity shapes health and risk for chronic illness.
You can learn more about the freeze response and recent research identifying a cell danger response as an underlying mechanism in our mitochondria in this post about chronic fatigue syndrome (ME/CFS) or in my personal story.
How to Heal from Adverse Childhood Experiences and Chronic Illness
Dr. Robert Anda presenting at a conference in Alaska
ACEs Affect Genes Through Epigenetics
Adverse childhood experiences alter how genes behave through epigenetics (38)Romens, S. E., et al. (2015). “Associations between early life stress and gene methylation in children.” Child Development 86(1): 303-309, (39)Papale, L. A., et al. (2018). “Differentially Methylated Genes in Saliva are linked to Childhood Stress.” Scientific Reports 8(1): 10785. This is a process by which small chemicals attach to the surface of genes to influence how they express themselves. The chemicals attach and detach based on environmental factors such as stress and diet, exercise and trauma.
While epigenetic changes can last a decade or a lifetime, the beauty is that they are sometimes (often?) reversible (here’s an introductory post). Healing trauma is one way of reversing epigenetic changes caused by ACEs (40)Yehuda, R., et al. (2014). “Lower Methylation of Glucocorticoid Receptor Gene Promoter 1 in Peripheral Blood of Veterans with Posttraumatic Stress Disorder.” Biological Psychiatry.
Adverse life experiences, infections, toxins and other exposures that overwhelm our body’s ability to escape and overcome threat also trigger a cell danger response (CDR). The CDR is regulated by the nervous system, happens at the cellular level of defense, is affected by epigenetics, and has been proposed to underlie over 100 different diseases (41)Naviaux, R. K. (2014). “Metabolic features of the cell danger response.” Mitochondrion 16: 7-17.
These 10 tools offer additional ways that are sufficient for some to improve from or heal chronic disease.
Tips on Healing ACEs
In the video above, Dr. Robert Anda is presenting at a conference in Alaska Acting in the Larger Community.
Some communities, organizations and states are beginning to implement evaluation, prevention and treatment strategies for ACEs (42)see this 1.5 hour conference presentation by Dr. Robert Anda,et al. How can University of Alaska Ancourage (UAA) help address ACES? What do Future Leaders need to Know? 2012. Ancourage, Alaska: University of Alaska Ancourage, (43)Robert Wood Johnson Foundation, (44)more on wiki and much more is needed (45)Even this article is from 1998 I suspect it still applies: Whitfield, C.L., Adverse childhood experiences and trauma. Am J Prev Med, 1998. 14(4): p. 361-4, Abstract. Dr. Felitti emphasizes that it is challenging: (46)Felitti, V.J., Adverse childhood experiences and adult health. Acad Pediatr, 2009. 9(3): p. 131:
A serious question is what primary prevention would look like. One suspects that improving parenting skills across the nation might be the crucial issue here. The number of adults is myriad —including physicians—who have had no firsthand experience of supportive parenting. How might we address that serious lack on a population basis? The impact of a successful approach here might be as great as that of a major vaccine. Resistance to obtaining and acting on this information from childhood is to be expected. It will be the result of several factors: the awakening of personal ghosts, discomfort in breaking taboos, lack of training or knowledge, concern over upsetting parents, and perceived lack of time and reimbursement.
Informing the Public and those with Chronic Illness. For those of us with chronic illness, it is important to learn about this information so that we can take our health into our hands without having to wait any longer (47)see more about trauma therapies in 10 Under-utilized Tools for Treating Chronic Illness. Doctors and insurance companies, like many of us and our society at large, find this topic intimidating and difficult to explore, let alone embrace. Felitti believes that educating and empowering the population is the most powerful way to stimulate change, as we are a market force (48)see this 1.5 hour conference presentation by Dr. V. J. Felitti, The Relationship of Adverse Experiences to Adult Health Status. in The Child Trauma Treatment Network of the Intermountain West. 2003. Snowbird Conference Center, Salt Lake City, UT: Primary Children’s Health Center for Safe and Healthy Families and the Division of Child and Protection and Family Health of the Department of Pediatrics at the University of Utah School of Medicine in Salt Lake City and can be the ones who create change by voting with our wallets and influencing the direction of the tide with our feet and words and experiences.
Boyhood provides an example of how ACEs occur in all walks of life, in full view of friends, family and neighbours. And how trauma has been normalized and lives under our radars. Simply by knowing Mason’s ACE score of 6 we learn that he’s actually at risk for experiencing significant difficulties with health, work, and intimate relationships in adulthood.
The ACE studies can revolutionize how we perceive substance abuse, violence and depression, and chronic illness. Instead of asking “what’s wrong with you,” Robert Anda suggests that the ACE studies help us change the question, and to stop the shaming and blaming. They are helping us reorient to a place of compassion. The new question in trauma-informed therapy (49)Dr. Anda introduces this in his presentation at about the 25 minute mark is becoming, “what happened to you?”
Imagine what it would be like if doctors treated us – whether we have a chronic physical or mental illness or are suffering the consequences of an addiction – with such compassion.
Imagine if Mason’s mother had been given support. If someone had noticed the day Mason and his sister had changed schools and worn the same clothes two days in a row. If someone had asked his parents what had happened to them and offered to help them treat their own unresolved traumas.
Imagine if someone had recognized the pain and unanswered questions that Mason experienced throughout his childhood, and had helped him cope with it.
Imagine sitting in a doctor’s office – of someone who knows about these well-established links between adverse childhood experiences and chronic illness. Of having them ask “What happened to you?” with compassion as they seek to better understand the origins of our symptoms. If you need a dose of a kind, compassionate doctor who understands, consider watching one of the presentations given by Drs. Felitti (50)here’s a 9 minute video that includes brief stories from some of Dr. Felitti’s patients and is embedded below; a 13 minute presentation about ACEs and a 1.5 hour lecture at a Utah medical conference in 2003 and Anda (51)presentation at Alaskan conference. They are a balm.
Health journalist Christine Cissy White describes how she uses her ACE score in medical appointments. By giving her score she conveys the significance of her history as an important risk factor regarding her health (and educating many of her providers at the same time) without having going into detail about her past traumas. This is especially helpful with health care professionals with whom she has no established relationship.
9 minute presentation by Dr. Felitti which includes some patients’ personal stories
What if My ACE Score is “0”?
The links between adverse childhood experiences and chronic illness are more important than even the ACE studies suggest. The ACE studies do not look for every kind of trauma that may have happened in childhood. What is being discovered is that the links between adverse childhood experiences and chronic illness are not limited to events that appear to be overtly traumatic or that involve violence.
Many other types of trauma also affect risk for chronic illness.
A few examples of other kinds of trauma linking adverse childhood experiences and chronic illness include events such as
- hospitalizations (as described in this post on cystitis) and surgeries,
- accidents and falls
- experiences of being bullied, shamed, judged or blamed by family members but also by others;
- emotional and physical neglect;
- loss of people close to us other than our parents, including siblings and friends, as well as the loss of beloved pets;
- living in war zones or refugee camps;
- growing up away from home (such as on a reservation or in another form of boarding school) and/or being forced to attend school or live in environments that negate your culture and beliefs;
- living amidst inner city violence,
- and much more
For more, see Jane Ellen Steven’s blog post from ACES too High about the larger picture and how a broad variety of traumatic events all have similar effects.
You’ll also find hundreds of people sharing their stories and learn about their relief on discovering the science linking adverse childhood experiences and chronic illness in Donna Jackson Nakazawa’s blog post on ACEs and chronic illness.
My Updated ACE Score (Was 0 Now 2)
I used to think, only a few years ago when I first wrote this article, that my ACE score was zero.
In this January 2021 update I want to tell you that over the years and as a result of working with and healing trauma, I have come to see that I have an ACE score of 2 and another set of adversities in childhood that I refer to as “ACEs+” (I share the details in My Story).
ACEs Plus (ACEs+)
ACEs+ addresses the limitations of ACEs by opening up the types of trauma that affect health from the original 10. Many of what I see as “ACEs+” are subtle versions of the original ACEs. The realization stems from beginning to recognize through personal experiences in working with and healing from my chronic illness. Our nervous systems don’t necessarily tell the difference between threat from a parent who is emotionally unavailable for a year or two because of postpartum depression, for example (which fits in the category of parental mental illness and is an ACE) compared with a parent who suffers from lifelong depression, bipolar illness or schizophrenia. Nor do our nervous systems necessarily tell the difference between spanking and other forms of physical abuse (this is an ACEs+ because spanking is not included as an ACE in the ACEs questionnaire). The difference lies more in terms of “dose” than in whether covert or overt ACEs have an impact.
As you see in my own gradual awakening, many ACEs and ACEs+ can involve more subtle experiences that are difficult to recognize as anything but normal. It’s what to consider when you have a chronic illness and you think you haven’t experienced any adversity. Because it’s not about comparing our histories to others who “had it so much worse.” It’s about learning how our own experiences impacted our nervous systems and bodies so we can heal.
I write about one particularly difficult ACE to recognize known as emotional neglect. Its effects are so important and widespread that I give it its own category. I introduce the topic of emotional neglect in this post called “Chronic Illness and Invisible ACEs. When your ACE score is Zero.“
***Free eBooks 1 and 5 (ACEs)
Chronic Illness, Trauma and the Nervous System: Essential Guide to Quelling the Volcano
The Chronic Illness Model: 11 Characteristics of Trauma and Early Life Events that Affect Risk for Chronic Illness
Risk for Rheumatoid Arthritis: the Role of Trauma in Childhood
What’s Your Story? Leave a Comment
Are there links for you between adverse childhood experiences and chronic illness?
Does this research help make sense of your symptoms, your life, your relationships or health?
What’s your ACE score and what type of chronic illness(es) do you have? Has healing from trauma made any difference for you?
Leave a comment. Every comment helps me to adjust and refine this perspective about the role of ACEs in chronic illness and how it provides opportunities for healing.
|↑1||Felitti, V.J., et al., Relationship of childhood abuse and household dysfunction to many of the leading causes of death in adults. The Adverse Childhood Experiences (ACE) Study [see comments]. Am J Prev Med, 1998. 14(4): p. 245-58. Full Text|
|↑2||Huff Post Part Three|
|↑3||Huff Post, Part Two|
|↑4||Felitti 1998: Full Text|
|↑5, ↑6||Hughes, K., et al. (2017). “The effect of multiple adverse childhood experiences on health: a systematic review and meta-analysis.” Lancet Public Health 2(8): e356-e366|
|↑7||Stevens, J.E., Part One|
|↑8||Stevens, J.E., Part Two|
|↑9||Stevens, J.E., Part Three|
|↑10||The author’s blog is a source for up to date information about ACEs, called ACEStooHigh|
|↑11||as mentioned in the video clip above and updated to 450,000 in a personal communication with Dr. Felitti in April 2018|
|↑12||see more information, charts, and graphics on the ACEStooHigh blog|
|↑13||more on wiki|
|↑14||Bob Cesca presents a witty summary, “It’s Okay If You Didn’t Like ‘Boyhood’” that pretty much sums up all the other reasons I didn’t like it|
|↑15||loss of a parent from divorce or separation is one of the ACEs and gives him an ACE score of at least one from his childhood. It also gives his children an ACE score of 1 since he is divorced as well|
|↑16||Starecheski, L., Take The ACE Quiz — And Learn What It Does And Doesn’t Mean, in National Public Radio. 2015: Washington, D.C. NPR Science Desk: Shots.|
|↑17||Starecheski, L., Can Family Secrets Make You Sick?, in National Public Radio: What Shapes Health. 2015, National Public Radio (NPR): Washington, D.C. NPR Science Desk: Shots|
|↑18||Starecheski, L., 10 Questions Some Doctors Are Afraid To Ask, in National Public Radio: What Shapes Health. 2015, National Public Radio (NPR): Washington, D.C. p. NPR Science Desk: Shots|
|↑19||Starecheski, L., A Sheriff And A Doctor Team Up To Map Childhood Trauma, in National Public Radio: What Shapes Health. 2015, National Public Radio (NPR): Washington, D.C. p. NPR Science Desk: Shots.|
|↑20||learn more on the ACE website; see findings grouped by category on the CDC’s website|
|↑21||Dube, S.R., et al., Cumulative Childhood Stress and Autoimmune Diseases in Adults. Psychosom Med, 2009, 71(2) p. 248; Full Text|
|↑22||Borsini, A., et al., Childhood stressors in the development of fatigue syndromes: a review of the past 20 years of research. Psychol Med, 2013, 44(9): p. 1809-23|
|↑23||Endocrinology 152(12): 4496-4503|
|↑24||Borsini A, Hepgul N, Mondelli V, et al. Childhood stressors in the development of fatigue syndromes: a review of the past 20 years of research. Psychol Med 2013;44(9):1809-23. doi: 10.1017/S0033291713002468|
|↑25||Olivieri P, Solitar B, Dubois M. Childhood risk factors for developing fibromyalgia. Open access rheumatology : research and reviews 2012;4:109-14. doi: 10.2147/OARRR.S36086|
|↑26||Varinen A, Kosunen E, Mattila K, et al. The relationship between childhood adversities and fibromyalgia in the general population. J Psychosom Res 2017;99:137-42. doi: 10.1016/j.jpsychores.2017.06.011|
|↑27, ↑46||Felitti, V.J., Adverse childhood experiences and adult health. Acad Pediatr, 2009. 9(3): p. 131|
|↑28||Felitti video 10 minute presentation with assembly member Sandre Swanson on prisons and schools|
|↑29||Felitti, 1998, p. 256|
|↑30, ↑31, ↑32, ↑33||Felitti, 1998|
|↑34||Felitti, V.J., et al., Obesity: Problem, Solution, or Both? The Permanente Journal, 2010. 14(1): p. 7.|
|↑35||see more ACEstooHigh|
|↑36||Yehuda, R., et al., Vulnerability to posttraumatic stress disorder in adult offspring of Holocaust survivors. Am J Psychiatry, 1998. 155(9): p. 1163-71.|
|↑37||see more in the post on Trauma therapy with a Dog Named Kane|
|↑38||Romens, S. E., et al. (2015). “Associations between early life stress and gene methylation in children.” Child Development 86(1): 303-309|
|↑39||Papale, L. A., et al. (2018). “Differentially Methylated Genes in Saliva are linked to Childhood Stress.” Scientific Reports 8(1): 10785|
|↑40||Yehuda, R., et al. (2014). “Lower Methylation of Glucocorticoid Receptor Gene Promoter 1 in Peripheral Blood of Veterans with Posttraumatic Stress Disorder.” Biological Psychiatry|
|↑41||Naviaux, R. K. (2014). “Metabolic features of the cell danger response.” Mitochondrion 16: 7-17|
|↑42||see this 1.5 hour conference presentation by Dr. Robert Anda,et al. How can University of Alaska Ancourage (UAA) help address ACES? What do Future Leaders need to Know? 2012. Ancourage, Alaska: University of Alaska Ancourage|
|↑43||Robert Wood Johnson Foundation|
|↑44||more on wiki|
|↑45||Even this article is from 1998 I suspect it still applies: Whitfield, C.L., Adverse childhood experiences and trauma. Am J Prev Med, 1998. 14(4): p. 361-4, Abstract|
|↑47||see more about trauma therapies in 10 Under-utilized Tools for Treating Chronic Illness|
|↑48||see this 1.5 hour conference presentation by Dr. V. J. Felitti, The Relationship of Adverse Experiences to Adult Health Status. in The Child Trauma Treatment Network of the Intermountain West. 2003. Snowbird Conference Center, Salt Lake City, UT: Primary Children’s Health Center for Safe and Healthy Families and the Division of Child and Protection and Family Health of the Department of Pediatrics at the University of Utah School of Medicine in Salt Lake City|
|↑49||Dr. Anda introduces this in his presentation at about the 25 minute mark|
|↑50||here’s a 9 minute video that includes brief stories from some of Dr. Felitti’s patients and is embedded below; a 13 minute presentation about ACEs and a 1.5 hour lecture at a Utah medical conference in 2003|
|↑51||presentation at Alaskan conference|