
The links between chronic illness and adverse childhood experiences (ACEs) come from a set of studies that changed my life. The ACE studies are therefore near and dear to my heart and to my trauma-therapist-medical-doctor-and-gradually-recovering-from-chronic-illness-Self.
The ACE studies examined 10 types of trauma between birth and 18 years of age to find they increase risk for emotional and physical health conditions, as well as for the leading causes of death in the United States and much more.
These effects of adversity and trauma get wired into our brains, and are not “psychological” as is still commonly believed.
This blog post builds on my introductory overview about ACEs. It describes how ACEs can change medicine and health care, presents lists of chronic diseases and other effects of ACEs, and shares stories of how Oprah and Dr. Nadine Burke-Harris have gotten involved with ACEs (among many others across the United States and elsewhere). It also includes 5 free journal articles you can give to your doctor and two ACE fact sheets you can use for yourself, give to your loved ones or hand to your health care provider as an educational tool that validates why it’s not a psychological problem but a very real change in physiology.
The post includes 9 tips for doctors and other health care professionals who want to incorporate ACEs into their practices, tips on how to use the ACE fact sheets, and 6 tips on how you can benefit by knowing about ACEs.
This post describes two ACE fact sheets that summarize the science of adverse childhood experiences and their effects on risk for chronic illness (the Chronic Illness ACE Fact Sheet), as well as depression, PTSD and other mental health conditions, and more (the All Effects of ACEs Fact Sheet).
Both ACE fact sheets are summarized on a single page (facts on one side, references on the other), are quick to skim, and cite many studies. The downloads include the ACE questionnaire.
You can calculate your ACE score later in the post (see the table of contents).
Get eBook5: ACEs
This free ebook comes in PDF and kindle formats. Both contain this and 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).
If you have a history of health problems such as a chronic illness and adverse childhood experiences – and wish there was a way to convey the huge body of scientific evidence explaining how life experiences you never chose influence the risk of getting sick – these fact sheets are especially for you.
You can learn about the fact sheets in Part 2 of this article, see a list of over 30 diseases affected by ACEs in Part 3 (IIIA), download the 5 best journal articles to give your doctors in Part 4, or skip to Part 6 for ideas on how to use the fact sheets. Part 7 describes potent tools for healing the effects of trauma.
If the ACE information is new to you, learn more about ACEs in Part 3, see if your chronic illness or other symptoms are on the lists (IIIA and IIIB) and go from there.
IF YOU ARE A DOCTOR, psychotherapist, psychologist or other health care professional (or provide other kinds of services such as if you are a teacher, lawyer, social worker etc, you can incorporate ACE screening into your work.
Part 5 presents MDs who have implemented ACEs screening into their practices and links to resources about how they are doing it. It includes stories about how doctors overcame the fears we all have about lack of time and our concerns over opening a can of worms if we ask about ACEs (it’s easier than we all expect).
If I Had Known About ACEs …
If I had known about the ACE studies when I was a family doctor, it would have completely changed how I practiced medicine.
The ACE studies might have even led me to stay and continue to practice primary care and obstetrics, and to remain an assistant professor because I believed I had something truly valuable to teach others.
Knowing about ACEs might also have prevented the worsening of my chronic fatigue into a debilitating illness, even though my ACE score is 0. This is because it’s not only ACEs that affect health, as I’ve learned since retraining as a somatic therapist specializing in trauma. The science is showing us that all sorts of adversity – both big and small – affect long-term health.
If I were to ever practice medicine again, knowing about ACEs and trauma would enable me and my patients to make sense of their suffering, their illnesses and the difficult symptoms they struggle with. It would also offer new tools and approaches for beginning to work with and address symptoms, flares, speed of worsening and much, much more.
But the ACE study hadn’t yet been published when I left medicine early in 1998. And we didn’t know as much about the science and effects of adversity then either.
I didn’t learn about the ACE study until a chance encounter with the article 5 or 6 years after leaving medicine. Like many others, I dismissed the ACE findings at first because they didn’t seem to apply to me with my score of “0,” to the disease I was exploring for possible links to trauma (type 1 diabetes), nor to my own chronic illness. But over time I started to see the light.
Knowing about ACEs provides a solution.
Knowing about ACEs gives me and others with chronic illness a whole new set of tools to prevent and begin to address health problems.
It enables doctors be more effective because knowing about ACEs makes you look more closely, anticipate problems more easily, identify potentially serious issues more quickly, and even head them off at the pass (1)Burke Harris, N. (2018). The Deepest Well: Healing the Long-Term Effects of Childhood Adversity, Houghton Mifflin Harcourt.
Knowing about ACEs would have helped me connect more deeply with my patients and love them even more. It would have fed my starving soul that had too little to offer my patients.
Knowing about ACEs helps turn our lives around and bring in more joy, wholeness, and health.
This is because people want to understand.
We want to understand Why. Why we are sick. We we’re not getting better. Why stress seems to trigger symptoms. Why medications often don’t work or make symptoms worse.
We’re hungry for self-awareness.
We crave connection.
And we want to be seen, valued, and understood. We need to know we matter.
ACEs and other forms of trauma disconnect us from ourselves and from others.
Whether we are patients or health care professionals, mothers or kids, students or doctors we want to feel empowered and alive.
When I retrained as a somatic psychotherapist I learned what I’d always believed deep down but that had slowly been covered over as a consequence of my medical training – which is that our bodies want to heal.
In fact, our physiologies are DESIGNED to heal.
Healing trauma supports relationships and love, so we can be more fully who we really are.
And it supports health to much larger extents than we imagine is even possible.
The ACE studies are the tip of the trauma iceberg. They are a clear, straightforward, quick assessment tool that have repeatedly been shown to increase risk for everything from heart disease, obesity & autoimmune illness, to cancer, depression and suicide, to giving birth prematurely or experiencing postpartum depression, to addictions, divorce, violence, fractures, and beyond.
The ACE studies are offering doctors and the lay person alike a new understanding of health. They are helping our society recognize that when there is an imbalance between levels of adversity and levels of loving, nurturing support in our childhoods and in our lives, it has a profound impact.
The ACE studies are changing medicine. And they can change our society.
Most doctors aren’t yet being taught about the ACEs science or the decades of research preceding ACEs showing that the effects of trauma are not limited to psychological health. This needs to change. ACE Fact Sheets can help you support this emerging awareness as patients educate their doctors and other health care professionals while we wait for medical training to catch up with the science.
When doctors and patients start to recognize big traumas, it leads the way to start seeing the more subtle every day adversities that are just as powerful in affecting our long-term health. It can also begin to change how we support and educate parents and families and how police, rescue personnel, emergency room doctors and others can help and understand root causes so we can stop the blame and recognize the meaning underlying painful or destructive behaviors, health conditions and other effects of trauma.
Learning about ACEs can change your life. Sharing the ACE questionnaire or an ACE fact sheet with your doctor, teacher or friend can change their lives too.
1. Inspiration For ACE Fact Sheets
Excerpts from Oprah Winfrey talking about what she learned about ACEs. She conducted an interview with child advocate, clinician and researcher Dr. Bruce Perry on CBS 60 minutes March 11th, 2018. And shares how learning about ACEs impacted her in this preview, which is where the quote came from.
I was first inspired to create an ACE fact sheet by a commenter on the ACEs Too High news site who wished she had something to hand her doctors that validated what she knew.
This comment was the spark that got me started with a fact sheet.
I so deeply want doctors to know the science so they can act with more compassion and expertise. And so they can realize how effective they can be. I also feel my own anguish that comes from the limitations of living with chronic illness every day.
I created the ACE fact sheets so that people with chronic illness and adverse childhood experiences, as well as so many who struggle in other ways, can learn that being sick or having trouble finding support in life is not their fault. That they are not to blame. Or lazy. And that having experienced trauma affects our nervous systems and immune systems and is not something that we cook up, invent, or that is “all in our heads.”
I created the ACE fact sheets so patients and doctors could make sense of symptoms and find the tools to heal.
I was further motivated by science writer and fierce ACEs advocate Christine Cissy White, who described the best medical appointment of her life as being with a health care professional who “got it” about ACEs. That’s the kind of office visit that makes it worth practicing medicine for me as well. Her article includes the treatment recommendations that helped.
Cissy also describes how she used her knowledge of ACEs one day to get a refill. She was seeing a new specialist and instead of repeating her painful traumatic history, explained that she had a score of 8/10 and what the study found. It simplified her visit, empowered her, and informed her health care professionals all at the same time.
I want that for my fellow patients with chronic illness and for all of those living with other symptoms, as well as for my colleagues in the health professions.
In January I read a book on ACEs so connecting that it made my heart sing. And cry. If you read only ONE THING about ACEs, this is it.
Pediatrician Nadine Burke Harris describes her struggles to make sense of something she couldn’t quite put a finger on when treating her patients. She explains how learning of the ACEs studies changed her own life as well as how she works.
In The Deepest Well [21] she describes how ACEs taught her a different and more effective way of helping her patients. She envisions ACE screening becoming universal.
The quote below references a story Burke Harris shares about a woman who had just learned about ACEs during a presentation and who had then started crying. A friend of Nadine’s who was there worried that she’d just been triggered or traumatized by the information. When she asked the woman what was happening, however, the response surprised her:
“These are tears of pure, unadulterated joy.” “Why joy?” … “Because I understand now why I am this way. I understand why my siblings are this way. I understand why my mother raised us the way she did. I understand that I can break this cycle for my children and I understand that I’m not a victim, I’m a survivor.” p. 178
Oprah Winfrey says ACEs changed her life and her work too. She was on CBS 60 minutes, March 11th, 2018. I’m thrilled to know that OPRAH is on board this wagon now, too. This is OPRAH! we’re talking about. And if learning about how ACEs are filling the hole in Oprah’s soul, you can bet she’s going to help others find ways to heal and become trauma-informed and use the ACEs to address all kinds of wounds too. She’s going to be another game changer in ACEs.
Oprah interviewed psychiatrist Bruce Perry, MD, PhD on 60 minutes. He is well known in the trauma field for his compassion, science, research and knowledge about how trauma affects us beginning in the womb. He describes how infants and children are especially vulnerable because their brains and organs are developing during this time. And he talks about how to help them heal. A lot of trauma happens in relationships, as he explains, and healing happens in relationship too.
In a preview on CBS This Morning, Oprah acknowledged her history of sexual abuse, stated how excited she was about the ACEs information (so much so that she would jump on tables and dance if it helped spread the word), and explained that it’s changed the way she works with her philanthropies.
Unless you fix the trauma, you’re working on the wrong thing .… If you don’t fix the hole in the soul… where the wounds started, you’re working at the wrong thing…. It’s not an excuse. It’s an explanation….. It’s HUGE…. And it’s a game changer.
Oprah Winfrey
(Note: I use photos of Oprah and Dr. Nadine Burke Harris in this post because they are spreading the word and becoming the new faces of ACEs. To be clear, neither has endorsed this post nor my ACE fact sheets – but feel free to spread the word!)
Dr. Vincent Felitti is a role model of compassion and action for me. Felitti is a co-author and principal investigator of the original ACE study with CDC epidemiologist Dr. Robert Anda, and speaks directly to the challenges in spreading the word and engaging doctors to act. He believes the best way to involve doctors is by changing PATIENTS’ expectations, so we understand ACEs and the impact of ACEs on our health and lives.
Felitti believes educating the general public is how we will get doctors to learn about ACEs.
That’s because as patients we can vote with our feet and our pocket books.
An educated public is an empowered citizenship. This will create a potent market force that will incentivize doctors and medical organizations to change. You can hear his comment in the video at the bottom of Part 5 (below) at 1 hour and 30 minutes (1:30:00).
These are all examples that inspired me to create the ACE fact sheets.
2. Two Fact Sheets: Chronic Illness and Other Effects of ACEs
The Chronic Illness and Adverse Childhood Experiences ACE fact sheet focuses exclusively on physical diseases and lists over 20 chronic illnesses and physical health conditions that are more common with a history of ACEs (a longer list is included below in Part 3, Section IIIA).
The chronic illness and adverse childhood experiences fact sheet does not include risk for mental health and other non physical conditions common with ACEs. This is because medical doctors often see trauma as a source of only psychological effects. I created this fact sheet to emphasize the science and change this inaccurate outdated perception.
The All Effects of ACEs fact sheet summarizes all of the effects of ACEs, which include autoimmune and other chronic illnesses as well as many other symptoms such as PTSD, depression, anxiety and rage and other mental health conditions along with much more (see Part 3, Section IIIB).
3. What’s On the ACE Fact Sheets: The ACE Findings
Most of the information in Sections I-IV below is summarized on the ACE Fact Sheets. I’ve included it in this post for anyone unfamiliar with ACEs. It’s here so you don’t have to download the sheets if you’re just looking for information.
References are numbered according to the chronic illness ACE Fact Sheet, with a few specific references identified for the All Effects Fact Sheet and listed at the very bottom of this post in the References section.
I. The Adverse Childhood Experiences (ACE) Study
“ACEs need to be a vital sign” quote by Dr. Jeffry Brenner, founder and executive director of the Camden Coalition of Healthcare Providers, and a 2013 MacArthur Foundation genius award winner. Cited in Chronic Illness ACE Fact Sheet to educate your doctor. Dr. Nadine Burke Harris says the same thing.
The concept of adverse childhood experiences (ACEs) come from a 1998 Kaiser-CDC study with more than 17,000 participants finding that trauma in childhood increases risk for autoimmune [1] and other chronic diseases, and additional health problems later in life [2]. The results have been reproduced in a continuation of this study, which includes 450,000 patients (number based on personal communication with Dr. Felitti March, 15th, 2018), as well as hundreds of other studies with different populations [3]. The first national ACE study was completed in the U.S. in September 2018, having looked at 214,157 adults in 23 states between 2011 and 2014 with similar findings.
The ACE study can be found on websites such as the World Health Organization (WHO), the Centers for Disease Control (CDC) [8], and the Robert Wood Johnson Foundation (RWJ), which is the nation’s largest public health philanthropy. ACEs have also in the national news on PBS [9], NPR [10], the New York Times [11], the Huffington Post and on CBS 60 minutes with Oprah Winfrey.
You can find more information about ACEs and chronic illness in my post that uses an example from the movie Boyhood.
For the largest and most in-depth overviews of ACEs and how they are being studied, used and implemented around the United State, see the news and educational site ACES Too High.
II. How Are ACEs Measured? ACE Score is based on a maximum of 10 points
The 10 original ACE questions were drawn from areas in public health for which national programs were being developed in the 1990s and is not intended or designed to cover every type of trauma that affects health. Other types of trauma also increase risk (accidents, unsafe neighborhoods, being bullied, medical procedures, homelessness etc).
The ACE questionnaire asks if you have experienced any of the following types of trauma between birth and your 18th birthday. You add 1 point for any event per category. You can figure out your ACE score by taking the full questionnaire and it is also included in both ACE fact sheets.
- Physical abuse (Stats: 1 in 3.5 Americans)
- Sexual abuse (1 in 5)
- Emotional abuse (1 in 9)
- Physical neglect
- Emotional neglect
- Loss of a parent from divorce or separation (loss for other reasons, including death, were not included in the original ACE study but also increase risk)
- Violent treatment of mother (1 in10)
- Member of household: mental illness (1 in 5)
- Member of household jailed (1 in 30)
- Member of household: substance abuse (1 in 4)
Calculate Your ACE Score
* Your responses are anonymous and are also reflected in the identical questionnaire and graph in the Intro to ACEs blog post.
You can download free ACE fact sheets summarizing chronic illnesses and other health conditions affected by ACEs below (both include the ACE questionnaire) or download just the ACE questionnaire here.
Learn about the ACE studies, it will help you find new tools and links about chronic illness and adverse childhood experiences (ACEs) so you can begin to heal. Quote by Dr. Vincent Felitti “The impact of a successful approach to ACEs might be as great as that of a major vaccine.” Give the ACE fact sheet and educate your doctor, teacher, lawyer, social worker, local rescue and emergency personnel and police
Limitations of the ACE Study
One of the limitations of the ACE study is that it only looks at 10 types of trauma.
In addition to these 10, other serious life events also increase risk for chronic illness, mental health conditions and other long-term health problems.
Such events include
- death of any close relative and not only separation or divorce of a parent
- abuse of any member of the household and not only the mother
- growing up in an unsafe neighborhood, a war zone, refugee camp, or in foster care
- being bullied
- and more.
As neurologist and traumatologist Dr. Robert Scaer states,
Any negative life event occurring in a state of relative helplessness— a car accident, the sudden death of a loved one, a frightening medical procedure, a significant experience of rejection–can produce the same neurophysiological changes in the brain as do combat, rape, or abuse.
Another limitation is that ACEs don’t include the role of what I call Adverse Institutional Experiences (AIEs), which refers to racism, sexism, and the many other forms of discrimination that are deeply embedded, disproportionate and additive to risk for many groups. These are also based on religion, ability, sexual orientation; they include having been in institutions such as foster care, juvenile detention, jail, mental institutions; they include the pervasive threat minority groups feel about their risk of being incarcerated even when innocent and more than can be named. AIEs occur in all age groups and affect risk across generations. I write more about AIEs in my Essential Guide to Trauma, Chronic Illness and the Nervous System. Search for the term AIEs and you’ll find Serena William’s story and other topics and references.
An update to this blog post comes from a 2018 ACEs telephone survey of 250,000 noninstitutionalized adults older than 18 years finding that ACEs are higher in groups experiencing discrimination for race, sexual orientation, who have lower education or income, and who are unemployed or unable to work (2)Merrick MT, Ford DC, Ports KA, et al. Prevalence of Adverse Childhood Experiences From the 2011-2014 Behavioral Risk Factor Surveillance System in 23 States. JAMA Pediatr 2018;172(11):1038-44. doi: 10.1001/jamapediatrics.2018.2537. See a summary and graphics here.
Ultimately, there are many types of trauma that are not included in the ACEs survey nor in ACE studies. While these are important limitations, I see the power of ACEs in that it begins the important process of raising awareness. Once we start to open our eyes, ACEs science gives us tools to start to recognize the many different forms of trauma even as it can take time to identify and acknowledge the more subtle or pervasive ones. Another example of a limitation is attachment trauma, which is inherent with all ACEs but also occurs in ways that are invisible to most of us until we start to look quite deeply. I am currently working on another subset of ACEs that I call adverse babyhood experiences, which involves adversity before and during pregnancy, birth and the very first years of life. I share an introduction to ABEs in this post on type 1 diabetes.
IIIA. The Chronic Illness ACE Fact Sheet [1,2,12]
The Chronic Illness ACE Fact Sheet cites links between chronic illness and adverse childhood experiences and includes many of the illnesses listed below.
The list of chronic diseases that are known to be increased by ACEs is long. It can feel overwhelming but I’ve included it here so you can get an idea of just HOW MANY DISEASES have been specifically linked to adversity.
- Addison’s Disease
- ADHD, Behavioral problems in children, problems concentrating in school [21, All Effects ref 23-26]
- Asthma
- Cancer
- Celiac disease
- Chronic Fatigue (ME/CFS)* [15 & 16]
- COPD (chronic obstructive pulmonary disease)
- Coronary heart disease
- Dermatomyositis
- Diabetes, type 1
- Diabetes, type 2
- Fibromyalgia (FMS) ** [16]
- High blood pressure (hypertension) [13]
- Idiopathic pulmonary fibrosis
- Irritable Bowel Syndrome (IBS)
- Inflammatory Bowel Disease (IBD)
- Liver Disease
- Lung Disease (Asthma, COPD)
- Lupus (Systemic lupus erythematosus or SLE)
- Multiple Sclerosis
- Myasthenia Gravis
- Obesity
- Psoriasis
- Rheumatoid arthritis
- Scleroderma
- Sjogren’s
- Sleep Disorders [14]
- Stroke
- Thrombocytopenia purpura
- Thyroid, Grave’s
- Thyroid, Hashimoto’s
- Wegener’s granulomatosis
- Poor self-related health
* Chronic fatigue (ME/CFS) and medically unexplained symptoms were not included in the original ACE studies but other studies have found that ACEs and other types of trauma in childhood increase risk for these illnesses as well [16] and that early adversity is likely an important risk factor as it is for other diseases (3)Dietert RR, Dietert JM. Possible role for early-life immune insult including developmental immunotoxicity in chronic fatigue syndrome (CFS) or myalgic encephalomyelitis (ME). Toxicology. 2008;247(1):61-72.
- At least 2 additional studies have found that ACEs increase risk for ME/CFS (4)Heim C, Nater UM, Maloney E, et al. Childhood trauma and risk for chronic fatigue syndrome: association with neuroendocrine dysfunction. Arch Gen Psychiatry 2009;66(1):72-80, (5)Heim C, Wagner D, Maloney E, et al. Early adverse experience and risk for chronic fatigue syndrome: results from a population-based study. Arch Gen Psychiatry 2006;63(11):1258-66. doi: 10.1001/archpsyc.63.11.1258.
** At least three studies have found that ACEs are a risk factor for fibromyalgia. I’ve included one reference [16] in the ACE fact sheet (there isn’t room for more) (6)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, (7)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, (8)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. Two additional references are (9)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, (10)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. I don’t have the room to include these additional references on the ACE fact sheet but am glad to be able to list them here.
If your illness isn’t listed above, know that the science is pointing to the fact that it’s not just one type or 10 types of adversity – nor is it only certain kinds of trauma – that affect our health. It’s the balance between experiences of adversity and nurturing support.
If you’ve experienced any of the 10 ACEs, or other types of trauma that you believe has influenced your having developed a chronic illness, leave a comment below and name your disease for others to see as we all gradually increase our awareness of the impact of life events on health.
The length of the list of chronic illnesses highlights a coming change in medicine. It gives an idea of just how deeply life experiences interact with children’s developing bodies and physiologies to change how our nervous and immune and digestive and other organ systems learn to function later in life. And how many illnesses can respond to the effects of healing trauma.
Learn more about links between chronic illness and adverse childhood experiences in this summary post about ACEs and disease. Or download the ACE study about autoimmune disease [Dube, ref 1] and the original ACE study [Felitti, 1998] below in Part 4 either for yourself and / or for your doctors.
NOTE: There are many other effects of ACEs that have not yet been studied or that I haven’t yet been identified. If you have a chronic health condition of any kind or other symptom that you believe has been affected by ACEs and that isn’t listed here (in IIIA or IIIB), please leave a comment at the bottom of this post with a little bit about your history / symptoms and what you’ve found about this relationship. Leave a link to a page if you’ve written about it somewhere.
IIIB. The Overall Effects of ACEs Fact Sheet
The All Effects of ACEs Fact Sheet summarizes the effects of ACEs on risk for the 10 major causes of death in adults (including chronic disease), and a variety of other effects.
As in section IIIA, I’ve included these detailed lists so you can see if you’ve experienced any of these kinds of symptoms yourself. And to give you and doctors and others an idea of just how pervasive and powerful the effects of trauma and adversity are.
The 10 major causes of illness and early death in the US are all increased by ACEs:
- smoking
- alcohol abuse (7 times greater risk of abusing alcohol)
- addictions and abuse of illicit drugs (10 times greater risk)
- suicide attempts (12 times higher risk)
- a high lifetime number of sexual partners (more than 50)
- parenteral drug abuse (IV drugs)
- a history a sexually transmitted disease (STD)
- severe obesity
- physical inactivity
- depressed mood
Other effects of ACES
- addictions [Reference 17 on the All Effects ACE Fact Sheet]
- anxiety
- depression
- fractures and other injuries, intentional and not intentional: motor vehicle accidents, being the victim of shootings, stabbings [13 all effects ACE Fact Sheet]
- criminality (also see violence below) [Reference 14 on the All Effects ACE Fact Sheet]
- more marriages and greater difficulty with relationships in general
- intimate partner violence
- low life satisfaction
- parenting: greater challenges and difficulties
- poor academic achievement
- premature births
- PTSD
- unintended pregnancy & parenthood in teen boys and girls
- self-harm
- violence: Read about the Las Vegas or Parkland shooters’ ACE histories; Learn more in the books Barking to the Choir, G-Dog and the Homeboys: Father Greg Boyle and the Gangs of East Los Angeles, and Preventing Violence [References 14 & 16 on the All Effects ACE Fact Sheet]
IV. ACE Facts & Stats
What we are learning about the effects of adversity is mind boggling. Your ACE score affects not only your quality of life but also your chances of dying prematurely.
We think that no one wants to hear this – except that knowing changes our lives and empowers us to take action.
As Felitti alludes to, knowing about ACEs can be like getting a major vaccine in how powerfully it can be used for prevention.
The image below shows the number of states collecting ACEs data. This is an example of just how seriously ACEs are being taken around the United States (the study findings are also recognized in many other countries).
Above image by Vjkrist – Own work, CC BY-SA 4.0, in ACEs article on wikipedia
- How Common are ACEs?
- 63% of the United States population has an ACE score of 1 or more [2]
- 25% has an ACE score of 2
- 12.5% has an ACE of 4 or more
- ACEs Decrease Life Expectancy
- People with an ACE score of 6 live 20 years less on average (to age 60 instead of 80) [2]
- Premature death is 2 times higher with an ACE score of 4 [12]
- “Dose” Effect
- Each additional ACE increases risk for developing a chronic illness & other effects [2]
- Chronic illnesses begin at a younger age as the number of ACEs increase [6, 17]
- Risk for Autoimmune Disease Increases
- 20% increased risk with each additional point in ACE score [1]
- Hospitalizations Increase
- 70% risk for an autoimmune disease with ACE score of 2 compared with ACE of 0 [1]
- Markers of Inflammation Increase
- C reactive protein is an indicator of inflammation and is higher with a history of ACEs [1]
- ACEs Amplify Other Risk Factors
- ACEs may increase sensitivity to other risk factors such as infections [1]
- ACEs increase 10 of the leading risk factors for morbidity and mortality:
- smoking, severe obesity, physical inactivity, depressed mood, suicide attempts, alcoholism, any drug abuse, parenteral (IV) drug abuse, a high lifetime number of sexual partners, and having a sexually transmitted disease (STD)
- ACE Effects Are Multigenerational
- Maternal ACEs increase a child’s risk of physical / emotional health conditions [4, 18]
- ACEs are Higher in Minority Groups
- ACEs are higher with low income, unemployed or inability to work
- ACEs are higher with lower education or income
- ACEs are higher in Black, Hispanic and Multiracial populations
- ACEs are higher in bisexual and lesbian / gay populations
- Suggests that “exposure to ACEs may exacerbate inequities in health, social, and economic outcomes across generations (11)Merrick MT, Ford DC, Ports KA, et al. Prevalence of Adverse Childhood Experiences From the 2011-2014 Behavioral Risk Factor Surveillance System in 23 States. JAMA Pediatr 2018;172(11):1038-44. doi: 10.1001/jamapediatrics.2018.2537, see Discussion.
- Why Doctors Should Ask About ACEs
- When doctors ask about ACEs it offers insights, validates, and removes blame [19, 20]
- As a doctor, it helps your patient if you ask, “How has this affected you later in life?” The responses rarely take more than a few minutes according to Felitti and others who screen their patients for ACEs. Their recommendation is to ask for the total ACE score, and not which specific ACEs a person has experienced.
- Informing people offers new options and tools for prevention and healing
- Book by a Pediatrician Screening for ACEs in Medical Care
- A must read for every health care professional, this overview of ACEs describes how one pediatrician learned about ACEs, screens for ACEs as part of medical care and how the knowledge informs the treatment she provides. She also shares some gut-wrenching details about her personal experiences that give you an inkling of her own ACE experiences.
- Written by pediatrician Nadine Burke Harris, MD: The Deepest Well: Healing the Long-Term Effects of Childhood Adversity [21]
- ACEs Science & Story of Recovery from Autoimmune Disease
- Science journalist Donna Jackson Nakazawa describes the science of stress and how learning of the links between chronic illness and adverse childhood experiences helped her begin to recover from a number of autoimmune and other diseases over the course of 1 year. She also shares other people’s stories and helpful tools that you can use as well:
- Childhood Disrupted: How Your Biography Becomes Your Biology, & How You Can Heal [22]
4. The 5 Most Important Journal Articles to Give Your Doctor (& Read Yourself)
Quote from Dr. Nadine Burke Harris, founder of the Center for Youth Wellness, which incorporates and studies ACEs in clinical practice, from her 2018 book The Deepest Well, p. 178.
When introducing ACEs to your doctor, I recommend starting with only one document at a time, such as the double-sided ACE fact sheet, the ACE questionnaire, or one study from below. Doctors are like us and get easily overwhelmed with too much information, especially given the small amount of time they have for appointments.
So one option is to provide one piece of information only at any single office visit.
As an example, if you have type 2 diabetes, depression, PTSD, severe obesity or other chronic conditions you can give your doctor an ACE fact sheet (both the Chronic IIlness ACE fact sheet and the All Effects ACE fact sheet are appropriate here. At a future visit, give him or her a copy of the original ACE study below (Felitti, 1998). At a third, give them a copy of the ACE questionnaire.
If you have an autoimmune disease, you can use the more specific Chronic Illness Fact Sheet, which summarizes chronic diseases only. You can then give your doctor the study by Dube 2009 [1] at a future visit, which specifically describes how adverse childhood experiences affect risk for autoimmune diseases (they increase risk significantly).
If your doctor or other health care professional is especially interested in ACEs, give them the other articles. Or direct them to this post.
Anonymous Letter From a Patient (Who Explains The Links)
A Published Letter to Her Doctor(s) & Story of Recovery
This letter, written by a real patient in the Kaiser Permanente Journal, will show you why we can’t ignore ACEs any longer.
This story shows how random we think health problems are from our current medical perspectives. It shows how the knowledge of ACEs changes how we can instead look for, investigate and treat these health conditions when we have a trauma-informed lens. And how it is possible to heal, even as an adult whose adversities happened decades in the past.
Anonymous (2002). “Dear Doctor (A Patient’s Personal Case Study of Adverse Childhood Experiences).” The Permanente Journal 6(1): 48-51.
Journal of Family Practice (Stillerman, 2018)
A terrific summary article on ACEs, written by a family doctor for other primary care doctors.
Stillerman, A. (2018). “Childhood adversity and lifelong health: From research to action.” Journal of Family Practice 67(11): 690-699.
The Original ACE Study (Felitti, 1998)
This first ACE study introduces all the effects of ACEs, including chronic illness.
Felitti, V. J., Anda, RF. et al. (1998). “Relationship of childhood abuse and household dysfunction to many of the leading causes of death in adults. The Adverse Childhood Experiences (ACE) Study.” American Journal of Preventive Medicine 14(4): 245-258.
ACEs & Autoimmune Disease (Dube, 2009)
This study specifically looks at ACEs and increased risk for autoimmune illnesses. It describes effects of ACEs on the immune system, differences in immune responses in men and women, and includes a list of the 5 most common autoimmune diseases found as well as others.
Dube, S. R., et al. (2009). “Cumulative Childhood Stress and Autoimmune Diseases in Adults.” Psychosomatic Medicine 71(2): 243-250.
American Academy of Pediatrics (AAP)
AAP ACE-Related Policy (Garner, Shonkoff et al, 2012)
The American Academy of Pediatrics has updated its policies to incorporate how adverse events increase risk for chronic illness and other health conditions. See also Shonkoff [4] in the References below for more information.
Garner, A., Shonkoff, J. P., et al. (2012). “Early childhood adversity, toxic stress, and the role of the pediatrician: translating developmental science into lifelong health.” Pediatrics 129(1): e224-231.
5. How to Incorporate ACEs Into Medical Practice
Most doctors worry about opening up pandora’s box and not being trained to deal with the emotional distress that might arise if they screen for ACEs.
This is especially true because we are already so short on time and have so much to cover medically.
I would have been cautious too when I considered how to implement ACEs screening. But these resources will show you that it’s possible, and that it can change how you and your patients feel and deal and heal.
Look at these examples and tips from early implementers of ACE screening in medical care, who say they would never go back to the way they used to practice, and who encourage the use of ACEs as a routine vital sign, like weight and blood pressure [21].
Where and how to start:
- The one MUST READ ACES BOOK for every DOCTOR and other health care professional, is “The Deepest Well” by pediatrician Nadine Burke Harris. It describes step by step how ACEs affect physical illness, how she gradually incorporated ACEs screening into clinical care and how she overcame the obstacles. She also provides examples of how to help parents by educating them about the research showing that we often parent the way we were parented (children raised in a household with ACEs generally have parents who were exposed to ACEs themselves as children), and offering support rather than judgment. You can also learn about her ongoing practice and research at the Center for Youth Wellness. See her 3 minute video about ACEs on PBS Newshour on the need for ACEs screening in medicine.
- Get a feel for the compassion, insight and clarity on how it’s truly possible and critical to implement ACEs screening from this thoughtful presentation by one of the principal investigator’s of the ACEs study, co-author and internist, Dr. Vincent Felitti: “The Relationship of Adverse Experiences to Adult Health Status” (see video at bottom of this section)
- drawing from evaluation of over 1.1 million patients since 1975
- describes how they make it work in their Kaiser clinic (in the video, starting at 56 minutes to 1:07:00 in video)
- Felitti and colleagues ask their patients “How has this affected you later in life?” and find responses short and usually less than 1 minute long
- Two Oregon pediatricians at the Children’s Clinic started screening for ACEs got started with screening
- 2 years later, 27 MDs who screened with them say they would “never go back to the way they did things before.”
- “Except for two who weren’t confident about how to have a conversation about ACEs, all of the pediatricians said that none of their fears materialized. Not a single parent broke down. The average time spent on the topic was three to five minutes. And all pediatricians said that it wasn’t as scary as they anticipated.”
- In Alberta, Canada, family physician Tersa Killam has implemented ACEs screening with her patients
- including expectant mothers because of risk for postpartum depression
- she is working with colleagues such as University of Calgary clinical psychologist Keith Dobson, who is researching the effects of asking about ACEs.
- Here is a list of books and approaches for healing the effects of trauma to recommend to patients. You can link to it from your website or have patients or clients google “Chronic Illness Trauma Therapies Books and Therapies.” The post includes
- approaches that people can use on their own and therefore at low cost.
- links to effective trauma therapies
- a description on how to find a therapist
- a free downloadable one page summary and the full post in PDF
- The American Academy of Pediatrics provides a toolkit for primary care providers.
- The ACEs 101 post on the news site ACEs Too High has articles on how ACEs are being incorporated into medical practice and other settings (search the page for “Who’s using ACEs science”). The entire site is a go-to place for up-to-date information on ACEs.
- See programs out of Harvard’s Center for the Developing Child and John Hopkin’s The Child and Adolescent Health Measurement Initiative (watch the 5 min video intro) and the latest surveys and data
- Watch the award-winning documentary “Resilience” on the science of ACEs and how ACE screening and knowledge is changing schools, health care and more around the country (here’s the trailer).
Felitti’s presentation at The Snowbird Conference with The Child Trauma Treatment Network of the Intermountain West to the Department of Pediatrics at the University of Utah School of Medicine in Salt Lake City. September 2003.
6. How to Use the ACE Fact Sheets
“ACES are the new cholesterol” quote from Dr. Paul Espias, who led the effort to implement screening at Kaiser Permanente’s pediatric clinics in Hayward and San Leandro in 2016. Cited in ACE Fact Sheet to educate your doctor. Also a recommendation of Dr. Nadine Burke Harris.
Use the ACE fact sheets as a patient or client consulting a health care professional or other service provider and in any other way you see fit (and leave a comment on what you tried and how it went to help others in this new way of working with our health).
Either fact sheet can also be used by others to educate those you serve, such as if you are a health care professional, social worker, teacher, lawyer, and beyond.
Share the ACE Fact Sheets To:
- educate your doctors and other health care professionals & others
- get earlier recognition and heightened awareness of potentially serious problems by your doctor and others, who can offer appropriate screening, treatment and referrals
- become an organization that is trauma-informed
- implement business practices to improve care, service, health and save costs
- shape the rules & laws in your community, local government, school etc
- help clarify that the effects of ACEs area real and not “in our heads”
- find powerful tools for healing and prevention (here’s a list of books and therapies for healing the effects of trauma such as ACEs)
Give ACE Fact Sheets to Your:
- primary care providers such as family doctor, internist or pediatrician
- specialist (rheumatologist, immunologist, pulmonologist, endocrinologist,…)
- psychiatrist, psychologist or psychotherapist
- practitioner of functional medicine or integrative medicine
- naturopath, chiropractor and other health care professionals
- teacher
- lawyer
- social worker
- select family & friends
Feel free to share either ACE fact sheet under the creative commons license CC BY-NC-ND 3.0: post a link on your website, share at will without making changes, don’t sell or otherwise use for commercial purposes, and kindly cite and link to this page as the source of the original document.
7. What You and Doctors Can Do and Recommend for Healing ACEs
“The impact of a successful approach to ACES” quote is from Dr. Vincent J. Felitti, internist at Kaiser and co-author with Dr. Robert J. Anda and others of the original ACE study in 1998. Citation from Felitti’s 2009 journal article, “Adverse childhood experiences and adult health.” Academic Pediatrics 9(3): 131-13
1. KNOWLEDGE: Gaining knowledge about the effects of trauma makes it easier to understand symptoms, triggers, flares and other effects. As I’ve mentioned earlier, the ACEs studies are just the tip of the iceberg.
The science of traumatic stress, brain development, child health and so much more all offer good, solid, eye-opening research explaining the mechanisms of how trauma affects health and how subtle events can be.
- Read my summary of the science describing how adverse life events, which include but are not limited to ACEs, increase risk for chronic illness and other health conditions.
- Get an overview of how trauma affects risk for chronic illness, which includes ACEs as well as other types of trauma – in my series of free ebooks and downloads.
- These are what I consider the best books on the science and are appropriate for health care professionals and the lay person alike:
- Dr. Nadine Burke Harris’ book about ACEs, The Deepest Well
- Trauma specialist with doctorate degrees in Medical Biophysics and Psychology, founder of somatic experiencing approach to healing trauma, Peter Levine’s
- Neurologist and traumatologist, Dr. Robert Scaer’s The Trauma Spectrum
- Psychiatrist Bessel van der Kolk The Body Keeps the Score: Brain, Mind, and Body in the Healing of Trauma
- Journalist Donna Jackson Nakazawa introduces ACEs and her improvements from an autoimmune disease interspersed with a discussion of the science of toxic stress (which complements and adds to the science of traumatic stress) in Childhood Disrupted
2. RESOLVING EFFECTS OF TRAUMA: There are many approaches for healing the effects of trauma, even if it happened years or decades in the past.
Cognitive behavioral therapies can help change behaviors, recognize threats and make life changes that increase safety and support, which are important in the process of healing.
Nervous system patterns of threat cannot usually be accessed and addressed through conscious awareness or talking (effects of trauma are stored in nonverbal parts of the brain), so other approaches are often necessary for healing underlying effects of trauma.
I trained in SE and SPI (below) and have been using the following other approaches for healing trauma and recovering from my own debilitating chronic illness (here’s my story). It’s given me insights, a deep understanding of how subtle traumatic events can be that affect health, and taught me that healing is possible. I am greatly improved even if not yet fully recovered.
The following and many other approaches are better designed for accessing and resolving underlying physiological effects of trauma, and therefore for working with symptoms such as fatigue, asthma and other chronic illnesses, high and low blood pressure / heart rate / body weight / cholesterol, and pain, depression, anxiety, PTSD and more.
Examples of somatically based trauma therapies include:
- Somatic experiencing (SE) website, a list of SE practitioners around the world
- Sensorimotor Psychotherapy Institute (SPI) website; list of their practitioners around the world
- EMDR (Eye Movement Desensitization and Reprocessing) is described on wikipedia; lists of practitioners with the EMDR Institute and the EMDR International Association.
For more information on healing, start with this list of books and therapies for working on your own as well as tips and links to finding a trauma therapist.
3. ENCOURAGEMENT THROUGH STORIES OF HEALING
- a patient’s published letter “Dear Doctor” (mentioned above)
- Donna Jackson Nakazawa’s journey of healing Childhood Disrupted (mentioned above)
- other stories in my free ebook 1 An Overview of Trauma & Chronic illness
4. LETTER TO YOUR HEALTH CARE PROFESSIONAL
Patient advocate, author, speaker, artist, Joyelle Brandt speaks for the trauma informed movement as a survivor of adverse childhood experiences. She has created a set of 1 page downloadable letters for anyone with a history of ACEs and other types of trauma that can affect your health and how you experience medical appointments, care, exams and procedures.
As Joyelle so articulately states, when a health care professional knows about ACEs and a patient’s history, it can save lives.
She has a letter for general health care professionals (HCPs)and one for prenatal care providers.
See “Dear Health Care Provider” and “Dear Prenatal Care Provider” on her Resource Page.
She also uses these letters for HCPs to give to patients and offers guidelines on how to speak about it (as well as a book). See No. 5 in her post “Vital Information … Left Out Can Cost Lives” from above.
5. FIND MORE ACEs RESOURCES & INFORMATION in the article “ACEs 101” or the 5 minute ACEs video primer on ACEs Connection
6. HOW ACES INFLUENCE HEALTH is described in my essential guide to chronic illness, trauma and the nervous system.
This work is licensed under a Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License. You are free to share and use but please cite or link to this blog post as the original source.
References
- Dube SR, Fairweather D, Pearson WS, Felitti VJ, Anda RF, Croft JB. Cumulative Childhood Stress and Autoimmune Diseases in Adults. Psychosom Med. 2009;71(2):243-250.
- Felitti VJ, Anda RF, Nordenberg D, 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):245-258.
- Hughes K, Bellis MA, Hardcastle KA, et al. The effect of multiple adverse childhood experiences on health: a systematic review and meta-analysis. Lancet Public Health. 2017;2(8):e356-e366.
- Shonkoff JP, Garner AS, Committee on Psychosocial Aspects of C, et al. The lifelong effects of early childhood adversity and toxic stress. Pediatrics. 2012;129(1):e232-246.
- Garner AS, Shonkoff JP, Committee on Psychosocial Aspects of C, et al. Early childhood adversity, toxic stress, and the role of the pediatrician: translating developmental science into lifelong health. Pediatrics. 2012;129(1):e224-231.
- Luby JL, Barch D, Whalen D, Tillman R, Belden A. Association Between Early Life Adversity and Risk for Poor Emotional and Physical Health in Adolescence: A Putative Mechanistic Neurodevelopmental Pathway. JAMA Pediatr. 2017.
- Romens SE, McDonald J, Svaren J, Pollak SD. Associations between early life stress and gene methylation in children. Child Dev. 2015;86(1):303-309.
- CDC (Centers for Disease Control and Prevention). Adverse Childhood Experiences (ACEs) [website]. 2016; CDC 24/7: Saving Lives, Protecting People:https://www.cdc.gov/violenceprevention/acestudy/. Accessed Nov 2, 2016, 2016.
- Bouffard K. Why stress may be fueling the childhood asthma epidemic [TV news with segment from Karen Bouffard of The Detroit News]. 1996-2016 PBSNewsHourproductions LLC. Dec 9, 2015, 2015.
- Starecheski L. 10 Questions Some Doctors Are Afraid To Ask. National Public Radio: What Shapes Health. Vol 2015. Washington, D.C.: National Public Radio (NPR); 2015:NPR Science Desk: Shots;
Haelle, T. (2018). Childhood Trauma And Its Lifelong Health Effects More Prevalent Among Minorities. National Public Radio: Public Health. Washington, D.C., National Public Radio (NPR). 2018: NPR Science Desk: Shots.
- Bornstein D. Putting the Power of Self-Knowledge to Work (Part III of III). The New York Times. August 23, 2016;The Opinion Pages.
- Bellis MA, Hughes K, Leckenby N, Hardcastle KA, Perkins C, Lowey H. Measuring mortality and the burden of adult disease associated with adverse childhood experiences in England: a national survey. J Public Health (Oxf). 2015;37(3):445-454.
- Su S, Wang X, Pollock JS, et al. Adverse childhood experiences and blood pressure trajectories from childhood to young adulthood: the georgia stress and heart study. Circulation. 2015;131(19):1674-1681.
- Kajeepeta S, Gelaye B, Jackson CL, Williams MA. Adverse childhood experiences are associated with adult sleep disorders: a systematic review. Sleep Med. 2015;16(3):320-330.
- Heim C, Nater UM, Maloney E, et al. Childhood trauma and risk for chronic fatigue syndrome: association with neuroendocrine dysfunction. Arch Gen Psychiatry 2009;66(1):72-80
- Borsini A, Hepgul N, Mondelli V, Chalder T, Pariante CM. Childhood stressors in the development of fatigue syndromes: a review of the past 20 years of research. Psychol Med. 2013;44(9):1809-1823.
- Shaw MT, Pawlak NO, Frontario A, Sherman K, Krupp LB, Charvet LE. Adverse Childhood Experiences Are Linked to Age of Onset and Reading Recognition in Multiple Sclerosis. Front Neurol. 2017;8:242.
- Madigan S, Wade M, Plamondon A, Maguire JL, Jenkins JM. Maternal Adverse Childhood Experience and Infant Health: Biomedical and Psychosocial Risks as Intermediary Mechanisms. J Pediatr. 2017.
- Felitti V, Anda R. Lifelong Effects of Child Maltreatment. In: Chadwick DL, Alexander RA, Giardino AP, Esernio-Jenssen DJ, Thackeray D, eds. Chadwick’s Child Maltreatment: Sexual Abuse and Psychological Maltreatment. Vol 2. 4th ed. Saint Louis, MO: STM Learning, Inc; 2014:12.
- Goldstein E, Athale N, Sciolla AF, Catz SL. Patient Preferences for Discussing Childhood Trauma in Primary Care. Perm J. 2017;21.
- Burke Harris N. The Deepest Well: Healing the Long-Term Effects of Childhood Adversity. Houghton Mifflin Harcourt; 2018.
- Nakazawa, D. J. (2015). Childhood Disrupted: How Your Biography Becomes Your Biology, and How You Can Heal. New York City, Atria Books.
Additional references from All Effects of ACEs Fact Sheet
13. Sotero MM. The Effects of Adverse Childhood Experiences on Subsequent Injury in Young Adulthood: Findings from the National Longitudinal Study of Adolescent and Adult Health [Doctor of Philosophy – Public Health]. Las Vegas: Department of Environmental and Occupational Health, University of Nevada; 2015.
14. Reavis JA, Looman J, Franco KA, Rojas B. Adverse childhood experiences and adult criminality: how long must we live before we possess our own lives? Perm J. 2013;17(2):44-48.
16. Fox BH, Perez N, Cass E, Baglivio MT, Epps N. Trauma changes everything: examining the relationship between adverse childhood experiences and serious, violent and chronic juvenile offenders. Child Abuse Negl. 2015;46:163-173.
17. Dube SR, Felitti VJ, Dong M, Chapman DP, Giles WH, Anda RF. Childhood abuse, neglect, and household dysfunction and the risk of illicit drug use: the adverse childhood experiences study. Pediatrics. 2003;111(3):564-572.
23. Hunt, T. K. A., et al. (2017). “Adverse childhood experiences and behavioral problems in middle childhood.” Child Abuse and Neglect 67: 391-402.
24. Jimenez ME, Wade R, Jr., Schwartz-Soicher O, et al. Adverse Childhood Experiences and ADHD Diagnosis at Age 9 Years in a National Urban Sample. Acad Pediatr 2017;17(4):356-61. doi: 10.1016/j.acap.2016.12.009 [published Online First: 2016/12/23]
25. Windle M, Haardorfer R, Getachew B, et al. A multivariate analysis of adverse childhood experiences and health behaviors and outcomes among college students. J Am Coll Health 2018:1-6. doi: 10.1080/07448481.2018.1431892 [published Online First: 2018/02/07]
26. Brown NM, Brown SN, Briggs RD, et al. Associations Between Adverse Childhood Experiences and ADHD Diagnosis and Severity. Acad Pediatr 2017;17(4):349-55. doi: 10.1016/j.acap.2016.08.013 [published Online First: 2017/05/10]
References
I feel ignorant not having come across ACE sheets before – this is such a brilliant post, hugely helpful as a resource – thank you for sharing!
Caz
Yeah, join the club Caz!! When I first read about ACEs I didn’t think they applied to me, my illness or the disease I was studying at the time (type 1 diabetes) so there ya go. Our current way of making sense of illness is based on such a deep divide between nature and nurture, life experiences /mind / “psychology” being separate from the body – that such information has been hard to find, acknowledge and recognize. Thanks for looking and glad it feels like a helpful resource!!!
So much information collated together. Thank you.
I wish you would include scoliosis too as being the effect of ACEs.
I know from my own personal experience this is a fact. Though I know being
a medical professional you need hard evidence to prove this.
I too have written an article on Oprah’s interview
https://mindkindmom.com/2018/03/13/oprah-aces-and-healing-relationships/
And have linked to your site. Hope all is in order
Hi Cheryl,
I just looked into the research and, as you guessed, couldn’t find any studies showing links between emotional trauma and scoliosis (YET) so I don’t want to include it on the fact sheet. HOWEVER, would you post a paragraph in another comment here, with a link to your post about the connections you’ve made and how you are healing, for others to read? There are so many more effects of ACEs than even the literature has yet to look at and everyone needs to know about it.
Loved your Oprah article and thanks for your links to my post!
Thank you for your kind words.
Suppressing our emotions not only makes us sick, it also inhibits our true self from shining through.
Scoliosis has been a metaphor of crouching and hiding, to protect myself from further abuse.
https://mindkindmom.com/2018/02/17/how-aces-cause-scoliosis/
Adverse Childhood Experiences are not a risk factor for the neuroimmune disease ME/CFS. There is no reliable scientific evidence to support this assertion.
As the CDC says: “Researchers have not yet found what causes ME/CFS,” Nowhere does the CDC mention ACE as a risk factor.
James Coyne has written about the substantial scientific errors made in claims that ACE is a risk factor for chronic illnesses. I suggest you read it.
https://mindthebrain.blog/2017/11/15/stop-using-the-adverse-childhood-experiences-checklist-to-make-claims-about-trauma-causing-physical-and-mental-health-problems/
Hi John,
In case you’re not familiar with my blog, I have ME/CFS, believe it’s as real and physiologically-based as type 1 diabetes and other autoimmune and chronic diseases, do not believe it nor all of the effects of trauma and adversity are psychological, do not recommend cognitive or behavioral therapies (I do recommend trauma based therapies), and am open to whatever works for people even as I share a well-researched view on the role of adversity and life experiences in shaping long-term health.
It’s indeed hard to have reliable evidence when we don’t even have a diagnostic test for our illness. And I agree, we don’t have any clear cause identified for ME/CFS.
I’ve now read the article you reference and am glad to know of arguments against the validity of ACEs. I agree there are many ways to interpret and respond to the ACE questionnaire that may not all be consistent with trauma. Some of the examples given against their validity, however, are consistent even with the strict DSM 5 definition of trauma you refer to (such as relief from the loss of an abusive or rageful alcoholic parent if they go to jail being a potential positive, yet indicative of a history of exposure to violence, fear, lack of safety and probably more, from a caregiver who is supposed to be a protector and connector).
I find the overall growing understanding of trauma and adversity in neuroscience, epigenetics, psychiatry, brain development, embryology, neurology, traumatology and other fields to go well beyond the “strict DSM” definition (I edited my response to say that the definition in the article reflects the older DSMIII criteria and not the updated definition in the DSM5). So my views on that article differ from yours and the author’s.
As for ACEs and ME/CFS, there’s at least one detailed review article citing 20 years of studies, including some control studies, re histories of physical, sexual and emotional abuse and increased risk for ME/CFS.
https://www.cambridge.org/core/journals/psychological-medicine/article/childhood-stressors-in-the-development-of-fatigue-syndromes-a-review-of-the-past-20-years-of-research/1C9F1D8C8AA524036564986EF8E9298F
Ancient medicine has always taken into account a patient’s mental states when treatment is considered. In Ayurveda there the doshas of a person that are taken into account when healing.
Modern medicine is just beginning to understand the mind and its effect on the body. A person’s genetic and environmental influences affect his mind-body equilibrium, so what is traumatic for one person may not be traumatic for another. The effects of ACEs is really a subjective influence. Each of us is affected differently. But having been affected by scoliosis I have no doubt when exactly my spine started to twist.
Patients usually have trouble remembering their childhood trauma, as most times parents flat out deny neglecting or abusing their kids. No one knows the real drama happening in anyone’s home. That is why most studies fail to unearth the real truth.
Dear Cheryl,
Yes, ancient traditions were more inclusive and it’s encouraging to see that modern medicine is catching up. And I agree that every person’s experience is unique and subjective. The ACEs simply ask about a set of events that are highly likely to be traumatic for many or most who experience them. I see them as helping our society and medical culture gain awareness about trauma because, just as you say, it can be so subtle or unrecognized that we don’t know we’ve experienced them and parents, doctors, and others don’t realize they’ve “committed” them. Once we as individuals start to recognize them ourselves like you did, however, things start to get a lot more clear. And to make sense. And then we can find our way out, as you’ve been doing. Thanks for sharing!
Hi, I have just spent some time reading the information you provide. I have fibromyalgia and have suffered with depression. Everything you have written resonates deeply with me. I can FEEL how my childhood led me to be the person I am with the health conditions I have. I wont go into detail here but the neglect and abuse I experienced as a child led to me being DESPERATE for affection and support. Every step I have taken was pre determined by the steps taken before. I am now going to spend some time considering all the ways I can heal myself and go on to live a more fulfilling life. THANK YOU from the bottom of my heart!
Oh Lesley, My heart goes out to you. I’m so glad you can feel and see the influences and that it gives you a sense of clarity about the options you have that support healing. That desperate longing is a clear risk factor in many different kinds of studies, perhaps most evident in the Systemic Family Constellation work. This is the latest and perhaps clearest book on this specific aspect of this topic, that I’ve just read, if it feels of any interest. Wishing you all the very best with your next steps.
I have sarcoidosis and my ACE score is 6.
You don’t speak of that autoimmune disease. But I’m sure that it is related.
Hi Claire,
I agree with you – an ACE score of 6 would make a lot of sense for having a chronic disease, including sarcoidosis. Not every illness is included yet in studies on ACEs.
One researcher who has included sarcoidosis is Dr. Robert Naviaux who writes about a mechanism through which trauma and threat responses appear to be the underlying driver of symptoms. Take a look at table 1 and the list of diseases. Sarcoidosis in the left column under innate immune disorders. I write about the cell danger response here if that’s helpful.
If it’s of interest, you might also take a look at my survey for prenatal and other early events on my chronic fatigue (ME/CFS) post. The survey is only available for ME/CFS right now but skimming through the events could give you an idea of there are additional adverse events that could influence health, since the research suggests adversity affects risk for all kinds of diseases and not just specific ones. I write about adverse babyhood experiences (ABES) in this post.
So glad to hear from you. Thanks for sharing this – it adds to the body of evidence for others.
warmly,
Veronique
Hi Veronique I had never heard of ACE sheets before so thank you for making me aware. It is a great post.
Hi John, You are so welcome! Glad you found them and may they find good use :-)
Thanks for such a brilliant post! Much easier now for me to accept the connection between the childhood neglect/abuse/cptd / following marriage with freeze-years and the chronic diseases!
I score with more than 5 ACE and have two listed AD, but one more is missing: Small-Fiber-Neuropathy. It is often linked to fibromyalgia, but it is not the same. Here is a link to an Oxford-lecture(very interesting and funny): https://youtu.be/s66LvWQ5Qso
Thanks from the bottom of my heart! My journey to MY Self will be lighter now. I’m determined to find my emotions and enrich my life!
Hi Constanze,
So glad this post was so helpful!! Yup, those ACE scores can sure add up and impact us. I am on a big break from the blog at the moment (having fun doing other things!) and will watch that video and add Small-Fiber-Neuropathy in the future. I have definitely heard of it – the list of chronic diseases seems never ending lol. Thanks for writing and you are so welcome. Wishing you well and here’s to everything that makes the journey lighter!