I was first inspired to create a fact sheet summarizing the effects of adverse childhood experiences (ACEs) after reading a comment in "Got Your ACE score?" A reader wished she had a form to give her doctor that documented the vast body of evidence explaining how early trauma increases risk for chronic physical and mental health conditions and much more.
I could relate.
I've had a debilitating chronic illness myself for 20 years.
While my ACE score is zero, I've learned from examining and integrating the research for the past few decades that there all sorts of other kinds of trauma that also affect risk for chronic physical and mental health conditions. All kinds of different challenging life events, many of which are subtle and unrecognized, are risk factors just as much as ACEs.
Ultimately, understanding trauma and its mechanisms and effects has been the most potent tool in helping me make sense of my own symptoms and begin to heal.
And if I'd known about the ACEs when I was teaching and practicing medicine, I might have remained a family doctor.
ACEs are like the beacon on a lighthouse. They tell you where the land is.
We've been afraid of this territory for a long time, judging what we don't understand, afraid of sinking our ships if we get too close.
But knowing about trauma is showing us where to find solid ground. And it is changing how we practice medicine and heal, one person at a time.
The science of ACEs is introducing our communities, our doctors, our judicial system, our teachers and others in every profession to the influence of life events on shaping long-term physical and emotional health. The research is guiding us into the bay, showing us where we can travel without getting stuck, and giving us tools to become a more trauma-informed society.
I've seen, read and heard from many who wish their health care professionals knew what they knew, which is that our symptoms and chronic diseases are not in our heads and the effects of trauma include but are not limited to the psychological.
So we need to keep brightening the light and spreading the word.
Like Oprah did on 60 minutes last week.
In a preview to her segment, Oprah exclaimed that "learning about ACEs is a game changer."
It has changed how she sees people, how she runs her school in South Africa, and how she now understands philanthropies and what they need to do to be more effective.
"Unless you fix the trauma, ... the hole in the soul ... where the wounds started, you're working at the wrong thing."
Pediatrician Dr. Nadine Burke Harris, author of The Deepest Well and founder of the Center for Youth Wellness, has been incorporating ACEs into medical practice for years now. She writes eloquently on how learning about ACEs changed the way she practices medicine. And made her a better doctor.
She describes how screening for ACEs enables her to have a higher index of suspicion for potential health problems, consider symptoms and other potential effects with curiosity rather than judgment, take seemingly mild symptoms more seriously, and have ways to cope and even head off potential problems before they become too severe.
As a result of all the information and support, her patients and their families are learning to do this too.
For when her patients and others learn about ACEs, it changes their lives. For the better. And they too get to put their feet on land and find a steady place on which to rest and find safety so they can begin to heal what drives their symptoms. Even if the wind blows and the rain pours and difficult events persist or pop up again over time.
I've created two ACE fact sheets to support this process of educating our doctors and informing our patients (and others). One is the All Effects of ACEs Fact Sheet, the other is a Chronic Illness ACE Fact Sheet. You can download both at the bottom of this page.
Hundreds of studies have reproduced results from the original 1998 ACEs study by internist Dr. Vincent J. Felitti at Kaiser Permanente, epidemiologist Dr. Robert Anda and colleagues who looked at 10 specific types of trauma and how they affect our lives, our relationships, our ability to be in the world, and our long-term health (Hughes, 2017).
The 10 types of ACEs occurring from 0 to 18 years of age include losing a parent; physical, emotional or sexual abuse; physical or emotional neglect; having a parent in jail, who abuses alcohol or other substances, who has a mental illness, or who is violent towards the mother.
All of these ACEs are risk factors for chronic health conditions and other problems later in life. Even if they only happened a couple times. And even more so if they happened repeatedly over years.
ACEs increase risk for heart disease, type 1 diabetes and type 2 diabetes and other chronic illnesses, as well as depression, anxiety, PTSD, ADHD and other mental health conditions and much more.
Although the ACEs focus on just 10 types of trauma, other kinds of trauma in childhood also increase risk for the same kinds of health problems and other effects. These include being bullied, medical procedures and hospitalizations, having a parent or other family member who had a life-threatening illness, or losing a parent for any reason (not only from separation or divorce as on the ACEs survey), among many others.
The good news is that having an ACE score is not a sure fire sign that we'll have problems.
This is especially true if you had someone you could go to, who saw you, or who let you know that you mattered when you were a child. Having someone like this in your adult life is helpful too.
The additional good news is that knowing about ACEs tells us where to look to heal their effects - and there are many approaches for healing.
The ACEs research highlights all we've known for decades before this about the effects of adversity in childhood.
ACEs serve as a spotlight with solid science about the effects of early trauma. The studies act like a laser to zero in our attention on a topic that is practically invisible until you know what to look for.
Once you start to recognize the shape of the rocks despite the fog and the dark, the outline of the trees and mountains on the horizon, and the sound of the waves lapping on the beach, you find out there's an entire continent beckoning.
Knowing about ACEs shows us where to go. It gives us insights and clues about where the meadows and the grass and the other soft places are that can hold us and welcome us. It helps us figure out where to come ashore.
Because our bodies want to heal, our brains and neurons want to change, and our hearts want to open.
It starts with knowing about ACEs and other kinds of adversity.
The ACE studies are becoming more known in mental health settings, in schools and in other environments but most doctors and other providers of health care are not yet being taught about ACEs in their training.
When doctors and other health care professionals do learn of ACEs, they have concerns that asking their patients about such traumatic events will offend or anger them, open up an intensity of emotion they have neither the time nor the skills to deal with, or derail the medical appointment in other ways.
I would have had these trepidations too, given how complex many of my patient's medical histories were, let alone their social histories.
These pioneers have dropped anchor and started exploring the coastline.
Dr. Felitti states that if we educate patients about ACEs and change their expectations for medical care, it will create a market force that will get medical practitioners, health insurance organizations and others to change.
And it's happening.
These experiences all support the need to keep learning. To keep educating. And to keep making it easier to inform doctors and patients and colleagues alike.
In addition to the commenter who wished for an ACE form (thank you for being so courageous and clear about what you needed), I was also inspired to create an ACE fact sheet by science writer and ACEs advocate Christine Cissy White .
Cissy explains how knowing about ACEs helped her give a new provider information about her history without delving into the painful details of her traumatic past. "I have an ACE score of 8," she told her behavioral specialist. And then gave her a brief synopsis of the ACE studies since her health care practitioner wasn't familiar with the research.
I hadn't thought of this terrific way to use what we know about ACEs to simplify our medical care. Thank you, Cissy.
When our health care professionals know about ACEs, it enables them to provide an entirely different level of connection, compassion and treatment. Being seen, told it's not psychological or in our heads, and given new avenues for healing changes our lives. As patients. And also as doctors and (teachers and psychotherapists and beyond). The information and acknowledgement themselves are healing, and are an intervention and form of treatment all on their own.
This is what hospitals, their CEOs, insurers, doctors and others focusing on time or money as the bottom line, are missing.
Skipping over our histories and stuffing old emotions that are too big to cope with does not serve us, our health or our lives.
We need to keep sharing the information about ACEs with one another. Until we can all find that patch of grass where we can sit still long enough to rest our sea legs and ponder for a moment.
When we come into the present moment, we can consider how the past might affect our present. For many, it means allowing ourselves to take a breath and lie on the ground of truth, which is that if we have symptoms in the present, chances are we've had some turbulence in the past.
As physicians Jack Shonkoff and Andrew Garner write for the American Academy of Pediatrics and the AAP's new policies that include ACEs awareness,
"the process of [child and brain] development is now understood as a function of 'nature dancing with nurture over time,' in contrast to the longstanding but now outdated debate about the influence of 'nature versus nurture' p. e234.
Cissy describes how she's willing to travel farther to see a provider who knows about ACEs. And how doing so lead to "the single best medical appointment of my life."
People want to be self-aware. We want to understand why we're sick, or hurting or why medications don't help or make things worse.
Informed people make for happier, more empowered and healthier patients who learn they can take action because some things are actually within their control.
Doctors who have tools that make a difference have a better relationship with their patients and are more satisfied too. That's why knowing about ACEs might have been enough to keep me in medicine.
Even if the process of healing the effects of trauma often takes time, can be lifelong and is therefore not a quick fix, that's okay with most of us who are dealing with unrelenting, debilitating or otherwise limiting and painful symptoms. Many of our symptoms and illnesses have no known cure to begin with. It's much easier to face the challenges, the fears, the doubts and the journey when we understand what's happening and have a sense of why.
It's easier to walk the trail when you have an idea of the terrain.
Journalist Donna Jackson Nakazawa knows this terrain. Hers is another clear voice sharing the life-changing experience of what happened after her doctor told her about ACEs. In Childhood Disrupted, Nakazawa describes the science and the path she embarked upon that helped her begin to heal her autoimmune disease and other chronic health conditions.
All of these stories make me want to help more doctors and others learn about ACEs.
ACE fact sheets can support the light to keep shining bright. They summarize the ACE studies, cite and list over 20 references, and can be printed on a single two-sided page to give to your doctor and other health care professionals. If you are a health care provider, you can give them to patients and clients.
They can also be given to your teachers, students, lawyers, social workers and others.
Both fact sheets include the ACEs survey questionnaire (you can find a resilience survey on the "Got Your ACE Score" post).
The All of the Effects of ACEs Fact Sheet summarizes effects such as
- ADHD and behavior problems in children
- autoimmune disease and other chronic illnesses, cancer and other physical illnesses
- depression, PTSD, suicide and other mental health conditions
- injuries, intentional and not, such as car accidents, fractures and more
- violence and criminality (read about the Las Vegas shooter's ACE history)
- giving birth prematurely
- and other effects
You can download the All Effects of ACEs Fact Sheet at the bottom of this post. It can be given to your primary care doctor, specialists in behavioral medicine and psychiatry, specialists in any health care field and practitioners of alternative and complementary health.
The second fact sheet focuses exclusively on chronic illness.
My area of interest since leaving medicine, becoming a somatic psychotherapist and trauma specialist, and finding how to make sense of and recover from my own chronic illness has been to integrate the research. This includes the role of ACEs and other types of trauma on risk for chronic disease.
On my blog, I cite the science to provide a solid set of resources showing how adversity increases risk for physical diseases, starting in the womb. Part of my motivation to write is because it's hard to find this information, even online, even today.
The ACE studies are a body of research that provide a clear set of findings linking difficult events with increased risk for chronic disease.
I have created a Chronic Illness ACEs Fact Sheet especially for others with chronic illness and for their health care providers.
Either fact sheet works for chronic illness. The Chronic Illness ACEs Fact Sheet, however, gives you the option of introducing your doctor only to ACE studies showing risk for chronic disease.
This can feel like a safer place to start since other effects of ACEs such as mental illness and behavioral symptoms are not included.
Doctors are most comfortable dealing with medical health problems, since that's their specialty. So that's what I'd give them.
The Chronic Illness ACE Fact Sheet includes over 20 chronic illnesses and can be downloaded at the bottom of this post.
It includes 3* of the 5 most common autoimmune diseases (Dube, 2009):
- insulin-dependent diabetes mellitus (23.1%) *included in the fact sheet
- rheumatoid arthritis (18.8%) *
- autoimmune thrombocytopenia purpura (16.7%)
- idiopathic pulmonary fibrosis (9.1%)
- systemic lupus erythematosus (8.1%) *
The other diseases are listed in my ACEs Fact Sheets blog post of over 30 diseases identified so far in ACE studies. The post includes the 4 most relevant journal articles on ACEs to give to your doctor (or for doctors to download directly), and additional information such as links to resources for healing the effects of trauma.
Let's spread the word so we can make our world a better place, one child, one person, one family, one doctor at a time :-).
I'd love to hear your thoughts, feedback and how learning about ACEs first influenced your views, including if it was difficult or something you didn't want to know. And I'd love to learn how you use the ACE fact sheets.
Let's keep exploring this new soil. Let's keep planting seeds, watching what grows as a result of our curiosity, and experiencing what it's like to harvest as we climb onto shore after a long time at sea.
The attached ACE Fact Sheets are licensed under a Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License. They can be freely shared and used with a citation or link to this article or my blog as the original source.