Childhood trauma leads to lifelong chronic illness — so why isn’t the medical community helping patients?

ADonnaDadWhen I was twelve, I was coming home from swimming at my neighbor’s dock when I saw an ambulance’s flashing lights in our driveway. I still remember the asphalt burning my feet as I stood, paralyzed, and watched the paramedics take away my father. It was as if I knew those flashing lights were a harbinger that my childhood was over.

At the hospital, a surgeon performed “minor” elective bowel surgery on my young dad. The surgeon made an error, and instead of my father coming home to the “welcome home” banners we’d painted, he died.

The medical care system failed my father miserably. Then the medical care system began to fail me.

At fourteen, I started fainting. The doctors implied I was trying to garner attention. In college I began having full seizures. I kept them to myself, fearful of seeming a modern Camille. I’d awaken on the floor drenched in sweat, with strangers standing quizzically over me. Then, I had a seizure in front of my aunt, a nurse, and forty-eight hours later awoke in the hospital with a pacemaker in my chest.

In my early forties I developed Guillain Barre Syndrome, a neurological autoimmune disorder that causes paralysis from the neck down. I found myself in Johns Hopkins Hospital, on the exact anniversary of my father’s death, in the same hospital wing where he had died, unable to move. I was a few days shy of turning forty-two, the very age at which my dad had passed away.

I recovered, only to relapse, falling paralyzed again. Many of my children’s early memories revolve around my bed, where we played board games and read books.

It wasn’t until I was fifty-one-years old that a physician sat me down and asked me the most important question of my life – one that would lead me to better health than I’d had for decades: “Were there any childhood traumas or stressors that might have contributed to the extreme level of inflammation you’re experiencing as an adult?”

My physician explained that ongoing adversity in childhood leads to a chronic state of “fight, flight or freeze.” Researchers at Yale had recently shown that when inflammatory stress hormones flood a child’s body and brain, they alter the genes that oversee our stress reactivity, re-setting the stress response to “high” for life. This increases the risk of inflammation, which manifests later in cancer, heart disease, and autoimmune diseases like mine.

As a science reporter I was shocked to discover that research linking childhood stress to adult illness began in 1996 with the Kaiser Permanente-CDC Adverse Childhood Experiences Study (ACE Study). Since then, over 1500 peer-reviewed studies have replicated these findings.

The research was stunning. Two-thirds of Americans report experiencing Adverse Childhood Experiences. These include obvious sexual and physical abuse, but also stressors that many consider to be normal — growing up with divorced parents, living with a depressed or alcoholic mom or dad, having a parent who belittled or humiliated you – or simply not feeling as if your family had your back. People who’d experienced four such categories of childhood adversity were twice as likely to be diagnosed with cancer and depression as adults.

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Violence is just one part of childhood trauma. So why are we focusing so much on childhood violence?

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Whac-A-Mole players (photo by Laura)

Many people and organizations focus on preventing violence with the belief that if our society can stop violence against children, then most childhood trauma will be eradicated.

However, research that has emerged over the last 20 years clearly shows that focusing primarily on violence prevention – physical and sexual abuse, in particular – doesn’t eliminate the trauma that children experience, and won’t even prevent further violence.

“Although violence can beget violence, it’s hardly the only cause of violence,” says Dr. Vincent Felitti, co-principal investigator of the CDC-Kaiser Permanente Adverse Childhood Experiences Study (ACE Study), groundbreaking epidemiological research that showed a direct link between 10 types of childhood trauma and the adult onset of chronic disease, mental illness, violence and being a victim of violence, among many other consequences.

“Basically there’s lots of other ways,” he says. “Humiliating people. Isolating people. Verbally provoking them. All of those have potential for producing violence in response.”

In addition, violence can provoke nonviolent behavior that can be just as damaging as violence.

In other words, childhood trauma does not equal only violence.

The many types of childhood trauma

Violence is just one among many types of childhood trauma. The ACE Study found that violence is not more – or less — damaging than divorce, living with a parent who’s an alcoholic, being yelled at nearly every day of your childhood, or emotional neglect. Just as important, it rarely happens alone. If a child is experiencing violence, there’s usually some other type of trauma happening, too.

In fact, the entire approach to preventing violence against children – by focusing on only one type of trauma, by focusing on the child and ignoring the parents or caregivers, by ignoring the toxic stress imposed on the child and family by traumatizing systems – is so outdated that pioneers in this arena compare our current approach to a never-ending game of Whac-A-Mole.

They propose a completely different approach, one that focuses on creating and growing resilient children, families, organizations, systems and communities. It’s an approach that moves from blame, shame and punishment, to understanding, nurturing and healing.

The ACE Study is part of what’s being called a “unified science” of human development that recasts our understanding of how to solve our most intractable problems, such as poverty and homelessness, as well as childhood trauma. It comprises five areas of research:

  • the epidemiology of adverse childhood experiences (ACEs),
  • the neurobiology of toxic stress (the brain),
  • the biomedical consequences of toxic stress (the body),
  • the epigenetic consequences of toxic stress (passing from parent to child),
  • and resilience research.

Others call this “the theory of everything” in human development or NEAR science (neurobiology, epigenetics, ACEs, resilience). I just call it ACEs science.

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The single best medical appointment of my life was when a nurse practitioner asked about my adverse childhood experiences (ACEs)

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Heidi Aylward spent much of 2015 going to doctor’s appointments for back and joint pain, dizziness, swelling of the legs and feet, high blood pressure, elevated platelets, heart palpitations and extreme fatigue.

2016 isn’t looking much better. She’s worn a heart monitor, had a bone marrow biopsy and continues to have blood work. She holds down a job as a full-time project manager, tends to her daughters, home and pets.

But she feels like her body is falling apart.

“I’m not going to make it to 60,” she said, “Why do I even contribute to my retirement savings account?”

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Time and again: This time, Orlando, and again more pertinent questions must be asked

Mourners in Orlando. Photo credit: Sam Hodgson for The New York Times

Mourners in Orlando. Photo: Sam Hodgson for The New York Times

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For those of us who know that childhood adversity can lead to chronic disease, mental illness, and violence, among other consequences, the questions about Omar Mateen, the man who killed 49 people and wounded 53 others in an Orlando night club early Sunday morning, aren’t answered yet. In fact, most of the questions that would address the roots of his violent actions — and our successful efforts to prevent other mass shootings — haven’t even been asked.

There are a couple of hints. According to this New York Times article, “Mr. Mateen had a chilling history that included talking about killing people, beating his former wife and voicing hatred of minorities, gays and Jews…”

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“Silent Evidence” worth hearing about

Tennessee Jane Watson’s audio story, Silent Evidence, is about the sexual abuse she experienced when she was a girl, at the hands of an instructor. She’s posted two of three episodes. The first is below. Here’s the description, from her website, SilentEvidenceProject.com:

Sometimes silence protects us. Sometimes silence does us harm. The story of one young woman as she faces her abuser, the criminal justice system and most of all, herself. 

Watson says the real story behind all the headlines about sexual abuse is that most people who have survived sexual abuse never talk about it. On her site, she says that one out of 10 people experience sexual abuse, but the CDC’s Adverse Childhood Experiences Study (ACE Study), says it’s one out of five.

In Silent Evidence Watson breaks through the barrier of silence with a story focused on the “ramifications of sexual abuse, as they are lived by her and the people closest to her, over the course of a 28-year journey to go public.”

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Paying attention as the most exhausting part of parenting with ACEs

Kai in china

I used to sneak away for a hot bath as often as possible when my daughter was in the need-me-every-minute years. I’d soak long past when the water went cold and I felt guilty at times but sometimes I needed to be alone.

To read poetry.

To have some physical space.

To exhale.

I didn’t always know where or how to pamper or provide self-care to myself. There were few adults I trusted to help me. I believed in attachment-style parenting and wanted to be there all of the time for my daughter. And that even made me feel guilty when I craved alone time. Like any alone time I took meant not being present for my daughter.

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A working ranch integrates ACEs and animals into treatment for teens

HorseCU Although it’s too soon to tell if integrating trauma-informed and resilience-building practices based on adverse childhood experiences (ACEs) sciences is making a difference for the teens living at Home on the Range, a residential treatment center in Sentinel Butte, ND, it’s made a huge difference for the people who work there. They now understand that kids aren’t born bad.

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