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ACE: The Greatest Study Never Told

The Greatest Study Never Told

    This is #7 in an ongoing series
 
I'll take a week off from my book's "tell all" personal history, to share something that's hitting me now, hard. Actually, I've had a lot of good news. Since its July 26 start, my blog has had 5,721 hits. Plus, it was listed among 'Best 
 

Blog Posts' on August 19 by the ACE Study's 'private Facebook' community, ACEsConnection.com. So why am I so emotional?

"ACE who?" you may ask, so I did. What is this ACEsConnection? I'd sorta heard of the Adverse Childhood Experiences (ACE) Study. (But never asked why does their logo pyramid top off with "Early Death"?) And now, here's this highly-informative website 
ACEsConnection.com, and instead of running from the fearsome tale in my book, they make me feel welcome! I'm not used to that. "Who are these guys," as Butch Cassidy sez?1

  The ACE Study is ongoing research on 17,421 average clients at a average San Diego HMO, who were simply asked if they'd had any bad childhood experiences, physical or emotional. It then compared their childhood story, to whether they developed serious physical medical conditions later in life – and found a shocking correlation. As the ACE Pyramid shows, Adverse Childhood Experiences (ACE) often lead to impaired thinking, unhealthy behavior, then disease, disability, and early death.    
 

But this rigorous research fell on deaf ears a long time. Head of the ACE Study, Dr. Vincent Felitti, MD, calls it "The most important public health study ever done, that no one's ever heard of."

Due to a lot of hard work by ACE activists, in the last few years many states have begun to do official ACE studies of their own, and over 400 social service agencies nationally have begun training staff to be "trauma informed."  Kudos to the activists at ACEsConnection for waking up the professionals!  Still I worry that  the general public and the schools are so badly uninformed, and I'm going to do all in my power with my new book to wake people up.

ACE began in 1995 at Kaiser Permanente, the largest health insurance and HMO in California, in joint research with the U.S. government Centers for Disease Control (CDC) (http://www.cdc.gov/ace/). Almost 20 years of official study on 17,421 people is something every American should know about, but almost no one does. Heck, I was a client at Kaiser Permanente at a day job in Anaheim, CA,  for two years, while doing all this research, and I barely heard of it. I was too traumatized at the time...2

Dr. Felitti never dreamed of any of this, either. He was an internist who fell into it all by accident. Kaiser had an obesity clinic, it was failing, and Dr. Felitti wanted to know why. Suddenly, by interviewing people who quit, this data leaped into his lap.

I was going to say "just an ordinary internist," but clearly he wasn't. Vincent Felitti was man enough to look this reality in the eye, feel the horror -- and not flinch.3

Now instead of retiring to the Bahamas like any internist, Dr. Felitti travels the world making speeches with titles like "Why the Most Significant Factor Predicting Chronic Disease May Be Childhood Trauma”4  He insists that “contrary to conventional belief, time does not heal all wounds, since humans convert traumatic emotional experiences in childhood into organic disease later in life.” One does not "just get over" this, “not even 50 years later,” he says, without serious efforts and treatment.5


Baby Casey: the Heartbreaker ACE of Attachment Disorder


Let's take this up close and personal. This is not an academic issue to me. And it shouldn't be an academic issue to you. Fifty percent of the American population has some degree of attachment disorder (see my Blogs #1-4), and attachment disorder is a major component of many Adverse Childhood Experiences (ACE).

I started at Dr. Felitti's bio on ACEstudy.org, and happened to click on the "get connected" tab. That jumped me to ACEsConnection.com, brain child of journalist Jane Stevens, whose work on child abuse back in the '90s helped lead her to the ACE Study. And there I found all this brilliant research.6  The first thing I saw was a video of a baby in a Polish orphanage that turned my heart and digestive tract inside out.

  Brace yourself before watching - this is what the physical pain of attachment failure looks like. Left alone for weeks or months in the under-staffed Warsaw facility, Baby Casey did not get the "face time," warm physical holding, emotional attunement, or any of the millions of tangible interactions required for an infant's brain to grow.7      
 

We humans, from the instant of birth, require a constant stream of "emotional, spiritual, psychological, and physical inputs" from another loving human, says trauma specialist Mary Jo Barrett -- as surely as we require air, food, and liquid.

"C
omplex trauma is about traumatic interruptions [of that stream],” she notes. "I from birth...have a series of relationships where I am emotionally, spiritually, physically vulnerable... If my spirit is endangered, my emotional stability is endangered, my physical being, is endangered, if I am repeatedly interrupted in the context of these relationships, then these repetitions create a person who spends their life in fight, flight or being shut down.”8

A child left without this input stream learns that its own hard-wired biological needs are terrifying. “I learn that what I experienced internally and expressed externally with a cry, was met by a response that didn't make any sense to what I needed. So the organization of that child's brain will be quite different, as neurons which fire together, then wire together,” says Dr. Daniel Siegel. “I will have learned: it doesn't matter what I'm feeling, because people don't get me what I need. So I'll learn to live without calling out to other people, and studies have shown that as I have those experiences over and over again, I will actually have a different way of being in the world.  Ultimately, I'll become quite disconnected, not only from other people, but even from my own internal bodily self, and my emotional experience.”
9


But meanwhile, those hard-wired needs for
face time, physical holding, and emotional attunement just keep crying out. It's biology gone haywire. Babies are also hard-wired to be flooded with stress chemicals when those needs are not met, Dr. Bruce Perry explains in every speech. And the flood doesn't just stop. It can go on for years or decades.10

The emotional pain and sheer terror are so intense, that the child will do anything to distract itself from those screaming needs.

“What happens is that in states of distress I can only comfort myself in ways that are often maladaptive - I may bite myself, I may rock myself perpetually, trying just to stimulate myself
so I'm distracting myself from my needs,” Dan Siegel goes on. Such children “have all sorts of self-regulatory processes that are not interpersonal. They are very isolated.”

The fight-or-flight stress chemicals flood the bloodstream at a level which feels so terrifying, that the baby would rather pass out -- or even die -- than to feel it. "The baby thinks it's going to die," as Dr. Nancy Verrier puts it.
11  

I saw this video and said, "That baby's trying to knock herself out."

How many times have I felt that in the last few years: "The baby thinks it's going to die" becomes "I feel like I want to die."

"From the very beginning to the very end of our lives together, Casey suffered from violent and debilitating rages and temper tantrums," her father John Brooks writes in his new book "
The Girl Behind The Door." "The 'experts' told us she’d grow out of it; we just had to be tougher with her. How clueless they – and we – were." 7, Opt Cit

So if we have severe emotional pain as teens or adults, we can stop condemning ourselves, stop stuffing it, and go seek healing.

 

Turning Gold into Lead

Past a certain point, all those stress chemicals and panic feelings begin to physically destroy  body parts.

"The ACE Study findings suggest certain adverse childhood experiences are major risk factors for the leading causes of illness and death in the US," the CDC website reports. "As the number of ACE increase, risk for the following health problems increases in a strong and graded fashion:

  • Alcoholism and alcohol abuse
  • Chronic obstructive pulmonary disease (COPD)
  • Depression
  • Fetal death
  • Ischemic heart disease (IHD)
  • Liver disease
  • Early initiation of smoking 
  • Illicit drug use
  • Multiple sexual partners
  • Risk for intimate partner violence
  • Sexually transmitted diseases (STDs)
  • Unintended pregnancies
  • Abortion
  • Suicide attempts
"This is the largest study of its type which has ever been done to examine the effect of ACE on physical health, over the course of a lifetime," Dr. Felitti says. All 17,421 participants will be followed up for life.  
    "We are asking, 'How do you get from Here [see slide] to Here.'  From a newborn infant with total potential -- to a man who is broken, biomedically, psychologically and emotionally.

We found that ACE are remarkably common – what is uncommon is their recognition, or their acknowledgment.  
  "They are well-concealed by time, by shame, by secrecy, and by social taboo. They turn out to be strong predictors of what happens later in life in health risks, disease, and premature mortality. That combination of their high prevalence, and their great power, makes ACE the leading determinant of what happens to the health of a nation's population."12

"In no way could you dismiss this as a marginalized population," Dr. Felitti says of his 17,421 patients. Most of them are white middle class; 47% had attended college; they all had jobs and good health insurance or they wouldn't have been at Kaiser. 

"ACE are the risk factors which underlie the 10 most common causes of death in the U.S. With an ACE score of zero, you have a very medically uninteresting population - no internist has a chance of making a living with that group," he notes. 

"Swiss psychoanalyst Alice Miller says: 'The truth about our childhood is stored up in our bodies, and lives in the depths of our souls.  Our intellect can be deceived, our feelings can be numbed and manipulated, our perceptions can be shamed and confused, or our bodies tricked with medication. But our soul never forgets. And because we are one, one whole soul in one body, some day, our body will present its bill.' 

"In this study, we are looking at it literally. The cost of this is truly enormous. Whoever would have thought that pediatrics is the breeding ground for internal medicine," Dr. Felitti concludes.

Feel like you might have an ACE or two up your sleeve?

You can go to http://acestudy.org/faqs and take the ACE Survey, to see how many ACEs you might have. If you feel really awful, go to your family doctor, bring him this report, and tell him you want to see a specialist because you are a normal human responding to abnormal experiences. If you do not have health coverage, no matter what your age, you can contact the nearest children's hospital or the National Children's Advocacy Center's local office and ask for help. At www.nationalcac.org/locator.html, I used my zip code and found four places right near my home, just so I could report to you that they probably have facilities to help near you.

To read more, join ACEsConnection.com, the community of practice "private Facebook" network designed to prevent ACEs & further trauma and to increase resilience.
Just sign up, fill out your profile, and go to "My Page" to start adding information about what you're doing or thinking about these issues. If you're looking for others doing what you want to do, join a group, or start a group and invite people to join. I joined, and I formed a Southern California ACEs group, and here's my SoCal ACEs page: http://acesconnection.com/profile/KathyBrous


Excerpts from Kathy's forthcoming book DON'T TRY THIS AT HOME: The Silent Epidemic of Attachment Disorder - How I accidentally regressed myself back to infancy and healed it all are posted here most Fridays, unless current events beg an interruption. Watch for the continuing series of excerpts from the rest of her book, in which she explores her journey of recovery and shares the people and tools that have helped her along the way.

Series Table of Contents

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Footnotes
  1. Centers for Disease Control (CDC), "ACE Study DVD Pre-View movie," 3-minute preview.
  2. CDC Home page for ACE Study: http://www.cdc.gov/ace
  3. Felitti, Vincent, MD, "Adverse Childhood Experiences" by Vince Felitti, MD - 13 minute version
  4. Felitti, Vincent, MD, "Why the Most Significant Factor Predicting Chronic Disease May Be Childhood Trauma,” NICABM “Treating Trauma” Series, May 2012, NICABM.com
  5. Felitti, Vincent,MD, official speaker biography at www.apbspeakers.com/speaker/vincent-felitti
  6. Stevens, Jane, “The Adverse Childhood Experience Study" -- the largest, most important public health study you never heard of -- begin in an obesity clinic”.
  7. Brooks, John, "Video of Baby Casey in the Orphanage," Warsaw, Poland, 1991, from Brooks, John, "The Girl Behind the Door: An Adoptive Father's Lessons Learned About Attachment Disorder," at http://parentingandattachment.com/the-girl-behind-the-door/ Baby Casey video at http://acestoohigh.com/2013/08/02/the-early-heartbreaking-rages-of-a-baby-with-attachment-disorder/ Orignal video at http://parentingandattachment.com/meet-my-casey/ ]]. 
  8. Barrett, Mary Jo, MSW, "How to Treat the Patient Without Further Trauma," NICABM webinar June 29, 2011, NICABM.com. She is a professor at the University of Chicago; founder and director of the Center for Contextual Change; co-author of "Systemic Treatment of Incest;" and co-editor of "Treating Incest: A Multiple Systems Perspective." 
  9. Siegel, Daniel J., MD, “Early childhood and the developing brain,” on “All in the Mind," ABC Radio National, Radio Australia.
  10. Perry, Bruce, MD, PhD, “Born for Love: The Effects of Empathy on the Developing Brain,” speech at conference “How People Change: Relationship & Neuroplasticity in Psychotherapy,” UCLA Extension, Los Angeles, March 8, 2013. See also “Overview of Neuro-sequential Model of Therapeutics (NMT),” www.childtrauma.org, 2010 
  11. Verrier, Nancy, PhD, “Coming Home to Self: The Adopted Child Grows Up,” self-published, Lafayette, CA, 1993 
  12. Op Cit in FN3, Felitti 13 minute video at http://www.youtube.com/watch?v=GQwJCWPG478

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