More “do an ACEs history”, less “screen for ACEs”

 

 

It is with great deal of warmth and affection that I reach out to you. I first "met" you in the briefing articles and background  documents that Dr. Felitti sent me regarding ACES last year. I read your column and the comments that followed from it with great interest.  What I am writing is not some form of instant response.  I want you to know that there are huge defeatists in this country and we have to keep our eyes on the fool's prize.  I don't want you to think ill of me, for the Fox TV informed minority  - almost as if they were not really there.  In other words, say nothing when asked whether there is a Muslim in the White House today.  Laugh out Loud at the "N" word when no one else is listening.  Africans in America have been some else's property, although no one is prepared to admit that. This slavery was six generations ago,  Freedom for Africans in American today must compete with a Hollywood vision of Negroes in Black Face, entertaining in that Al Jolson era, with lots of laughter and little significance.  The  Telemedicine Initiative at Loma Linda University, sought to connect rural clinics to the LLU academic medical center over the Internet.  As Director of TM, we were successful in ophthalmology and dermatology (because of physician leadership),  unsuccessful with  "5150" patients (because of physician "leadership") and we abandoned a regional stroke center (due to hospital bed competition prevailing over technological innovation) . For many years, statisticians had little control over the operational directors - who did not understand how to "swim upstream and learn why these lost souls entered the water in the first place.  ACE represents a solution for the hundreds of thousands of advocates and millions of consumers  who are seeking equity in health care and who long to put their burden's down.

"Poor White Trash", for people of color, carries the "raunchy malodorous image" of a Black man being stretched by his neck to test his breathing.  Some day we should spend some time in each other's yards - me in your backyard and you in mine.  I will tell you now that taking my spirit to church on Sunday and feeling the power of uplifted thrust, reminds me that a rising force tears apart a falling force. My people are from Newton Kansas, fewer than 25 miles from Wichita, Kansas.  One good thing about our culture and the spirit of African values will take care of your children as well, if not better, that others have taken care of mine.

 

Paul Simms

ACEs also represent a massive loss of life for rural, multi-generation ACE families who are Caucasian.  I am one of those.  Living in a broken trailer at less than 1/2 the poverty level with this experience having occurred on both sides of one's family  diminishes life expectance and quality too --- even if by a freak accident of God or Nature one becomes a doctor.  THAT was never supposed to happen. 

 

We so easily forget about rural poverty -- it is high over 20 percent of kids in rural areas who are Caucasion are in poverty and white poverty at generally around 1/2 the Federal Poverty Level in only slightly better then African American Poverty in American is a major problem that has No Voice.  Look at the California ACE survey... Which regions/counties had the most ACEs?  Rural Areas in Northern California bordering on the Oregon Border.  

 

And yes these poor whites are left on their own to expire or whatever the terminology appropriate to a health care administrator would be.   Their lives are inconsequential -- except for the mental and medical illness they hopefully acquire so that Medicaid can pay for the drugs that pharmaceutical companies have to offer.   Their death is ignored, unimportant and unseen.

 

I do understand that Much must be done for African American, Hispanic and Native Americans but rural white poor and "Rural White Trash which I deeply identify with",. these kids need to be recognized too.  They are the kids in Paper Tigers Movie and they are in pain, they are suffering and some will die by their own hands.  So if no one else cares, I guess, though I have little to no power, I am brave and powerful.  I am a voice --- our children matter too!!!

 

Thanks.

 

More to say on this important discussion later.

 

 

Since November 2012, San Diego Black Health Associates, Inc SDBHA) has been pursuing a conversation with community members and advocates about Adverse Childhood Experiences. Our belief is that adverse childhood experiences stimulate diminished health and contribute to shorter lifespans among African Americans, Hispanic Americans and Native Americans. For the families who represent the premature lost lives and the heightened pain, we feel it important for them to have as complete a perspective as possible on the elements that trigger the health status gap. The forum, with Dr. Vince Felitti and Dr. Cheryl Grills, happened two weeks ago (September 12, 2015).  The title was Adverse Childhood Experiences and the Impact on Adult Health  Our venue was the Jacobs Community Center in Southeast San Diego. Over 125 residents attended the session.  In addition, employees from the San Diego Unified School District, the County Probation Department, the Health and Human Services Agency of the County  and the University of California at San Diego participated. Convening the forum in the community provided young people the opportunity to express their concerns and to be witness to their own realities. The shift of health access stimulated by the Affordable Care Act MAY trigger actions where the government withdraws health support.  Our commitment is to provide information about ACES to our community.  Our vision is to prepare and promote health advocates to assume management and leadership roles, to integrate this framework into the systems design. If we promote prevention and confess the weight (and lift the burden) of that which many might find shameful - the act of confessing in a safe and trusted place with people who accept and don't judge - may be the force which helps us get realigned and centered.  Much like I found transcendental meditation of great value for calmness and clarity 30 years ago. So similarly, teaching our community (and ourselves) about the importance of vitamins, the value in drinking water, the necessity of creating small support groups - not just for the prostate cancer and congestive heart failure, but for persons who struggle with all types of ACE challenges. It's O.K. for a man to write poetry, or to feel uplifted by fresh flowers.  It's OK to cry.  A number of us are familiar with front-line issues - like the continuous grief and shame of children who have incarcerated parents, or the neglect from foster care systems which count, but which don't listen to young people, or the missing support circle for families who have lost children - this is the work that must be done.  We redirect our resources back into functioning as the villages we all have been and will be.    We are grateful that Dr. Felitti, Dr. Burke Harris, and Dr Grills and others recognize, appreciate and promote the importance of this work - and are prepared to encourage a community grasp of it - for our own best interests. There won't be a special pill that resolves this mess. It will only be by trial and error, by the freedom to examine what works in which context and for what purpose.  In the end... A Luta Continua...

Paul B. Simms, Vice President,  San Diego Black Health Associates, Inc.

 

Great thread.

 

I went to a functional medicine nurse practitioner. I brought the ACE study and my ACE score to her and she read the study and then we met again. It was the single best medical appt. I've ever had. I didn't even go over which questions I answered as yes, just shared the number.

 

She spoke to me a in a manner no one has, just curious and open and explaining why anxiety could be an issue for me in a way that was about the body (not my own or personal failures at managing stress or being calm). But it wasn't just a feel good thing.

 

She asked how I coped through the teens and I shared with her things I'd never shared. i disclosed an eating disorder I had never discussed. Though it was decades in the past she tested my bone density and explained how it, with the traumatic stress, would have been hard on my system.

 

She also tested my CRP which was elevated though I'm not yet 50 and have no history of heart disease in my family. She wouldn't have if she had not known the extent of my history.

 

She helped validate the early menopause as likely being related to stress and dietary issues which I always suspected.

 

I didn't need to detail any parts of the causes of my trauma but our entire focus was on monitoring my health, protecting my health and supported my overall system which had been pretty taxed. It was about rebuilding, supporting and fueling me with health.

 

 

Honestly, I felt great and empowered and seen and heard and not judged, pitied or belittled or afraid to share. And because of that could talk more openly about health concerns, fears and issues.

Though she did know about stress and trauma she had not known about the ACE test. But she was incredibly receptive and read and followed up with me and had a one-hour appointment.

 

 

As a result I'm on some tumeric kind of anti-inflammatory and Vit. D and fish oil and magnesium (it was low). I understand self-care for me is high priority. Nothing is a cure but it was the most seen, heard and POSITIVE and HEALTHY I've ever felt after going to a doctor's office. She didn't treat me like I was to be pitied and I didn't feel I had to protect her from a hard-luck story she really didn't want to hear about as is the case with many.

 

It was just talking facts and life and health and what to do now.

 

To have the past honored and acknowledged, by a number, without me needing to detail gory details was a lot. It's helped me prioritize self-care and healing too knowing little else for me will protect my health.

 

One final note, just to see the slides on ACEs has been healing. Doctors and therapists might be see 100's or 1000's people struggle with depression or medication or decisions about treating anxiety. But we never see one another. When I see a slide that the vast majority with an ACE score the same as mine have struggled with depression or anxiety or medications THAT ALONE is SHAME REDUCING, HEALING AND HELPFUL.

 

Oh, it's not me bearing up badly?

It's not that I lack resilience or am not tough or am lousy at this business of being human?

Others, with similar experiences are tired or working hard and fatigued too? That's maybe even expected and normal and fairly standard. In fact, I might be doing incredibly well considering.... ?

 

THAT - THAT in and of itself is helpful for the general population to know. I've been working on healing, writing and even reading lots of self-help, attachment and healing related stuff. But I didn't know there was some science and hard numbers too.

 

I didn't know that those of us with Adverse Childhood Experiences, sometimes being horrible neglect, might share a lot with those of us with horrible abuse. We are a LARGE group and far too often we are splintered off into the types of pain we identify (sex abuse survivor, motherless daughter, adult child of an alcoholic) when the differences don't matter as much. Adverse Childhood Experiences include, on some level, most of us. It's much more inclusive language but it's not language therapists use.

 

Why aren't patients at the doctor or in a therapy office shown some of these stats and this research, not just the studies, and told, "In general, with people who have adverse childhoods x, y and z are pretty common."

 

Just that. That would be so helpful.

 

We never see the people before or after us who sit in the same chairs and tell similar stories. Until Facebook and social media we were virtually invisible to one another suffering in silence, fumbling, passing for "normal" or not.

 

Half of what's hard about recovering is the shame and silence and pretending and not only the trauma.

 

Plus, when childhood ends we are still related to family that maybe hurt or neglected or was not present and so we bring that with us to our marriages, parenting and work. Without awareness and education and unlearning what we did get and relearning what we didn't get - how can we grow and change and live healthier, happier and longer.

 

For me, learning about all things ACE has been crucial and positive and I'm glad more and more are learning more as well. FINALLY.  Like so many here I'm on a mission to share.

 

I'm glad for Jane, for Carol Redding, for Dr. Felitti and Dr. Anda and all the tireless advocates here (Tina, Mem, Kathy, Robert, etc. etc. etc.) So glad.

Cissy

Many programs in Oregon are talking about this and I appreciate your exploring this topic Jane. I value the power of words and the reactions different populations have to words (screening, assessment, history) based on their past experiences with our systems. I see great value in the Enlightened Witness approach and therefore see value in screening for some professions/services. We also know that for many populations who have/are experiencing systemic oppression that data has been used against them by our systems. We are asking folks to think about why you are asking about ACEs, what are you missing if that is your only focus, who is doing the asking, what is their training and how can we provide a process where folks can say no without feeling they will be denied services.

 

I am interested in ways we can collect this information that accounts for power differences - and folks are coming up with creative ways to address this (do it at home, peer support, universal precaution videos, training for the asker, etc). I know those in justice and child welfare systems are trying to make sure the ACE information is interpreted correctly and used to support and explain behavior. I don't believe there is any one best way and that we want to be attuned to power and privilege in our work when we are asking about these experiences. Exploring this often supports us asking  - we just want to be aware of how it will feel for a person in a position of authority to inquire about past adversity. 

As a former health care administrator, I began to realize that so much of what we do is ineffective. When we started screening at a rural clinic I administered, we started asking questions about smoking and alcohol use. A positive response was to talk to them about the negative impact on health. We tried to eliminate behaviors when we heard about a symptom. It didn’t work, and our patients became resentful. Our Medical Providers don’t usually have an option because of the income expectations and the huge demand for services. In my last assignment, our patients averaged 4.2 visits annually (1 more than the national average) and we did not have the capacity to handle about 18,000 visits annually (about 75 visits daily). Our goal was to screen out real medical need and treat the patient. As one of our AceConnection regulars points out, about 25% of patient visits (might be more in Indian Country), end up with an MUS (Medically Unexplained Symptoms) diagnosis. Medical assistance won’t help them except for any Placebo effect. So when I began examining an assessment protocol, I realized that our assessment didn’t have a strategic purpose. It was incomplete and not used in a targeted way to address the problems we uncovered.

So I visualize a different assessment process, as I have written about before. I have proposed we look at ACE’s (through client history, family hearsay and documented records-which can be difficult, but not impossible to come up with). Then I propose a nutrition blood test (limited currently to Omega 3 to 6&9 ratio, Vitamin D and ability to metabolize B Vitamins). Finally, I suggest looking at a behavioral history. Where I differ in terms of a behavioral history is that I propose we look at Positive, Neutral and Negative behaviors as possible identifiers of Developmental Trauma. 

The assessment is analyzed by an intake team that includes a Provider, Behavioral Specialist and Nutritionist. Emergent needs are taken care of immediately and an assessment conducted only when emergent needs are met. 

Research on Omega 3 deficit problems has convinced me that we might be able to achieve results through supplementation. The same is true with Vitamin D and B Vitamins. What I try to keep in mind is that we are aiming for extremely small target populations. Patients with 6 ACE’s, according to the studies, have an average lifespan reduction of 20 years. Suicide ideation affects less than 4% of the U.S. population annually. About 36,000 successfully complete suicide. We are literally looking for a needle in a haystack, but this assessment, done correctly and completely, can narrow the target  population down significantly. 

After the assessment is analyzed, the treatment protocol is medical first, nutrition second, higher level behavioral problems next and a Restoration to Health protocol fourth. If we can screen out MUS, we end up with 25% greater medical capacity. What I believe is that we have a treatment strategy (standardized) for MUS and non medical patients to follow.

Knowledge is the first step in healing. We need to move away from a blame and shame medical system to a supportive system. I really stopped liking Doctors and avoid medical care unless absolutely necessary because of one Doctor who criticized me for not having the willpower to lose weight. My mother in law stopped seeing Doctors when one criticized her for an offensive feminine odor. Unfortunately we have far too many stories like this among patients. And, of course, Doctors are frequently unable to help us, and too many are too quick with the  prescription pad. But with knowledge, we can let Patients/Clients know that their reaction to trauma in childhood is norman, and likely the source of many of their issues. Nutritional intervention can relieve many symptoms and help a Patient/Client relatively quickly. I include a concept referred to as “Trauma Release Exercise (TRE),” developed by Dr. David Berceli, for a variety of reasons. TRE allows Patient/Clients to “Tremor” stress and anxiety out of their body. The 4th step involves retraining the brain, through body awareness of they respond to developmental trauma, intercepting and mediating the response, with long term training on how to lower critical response through behaviors (again, Positive, Negative and Neutral behaviors).

Having a strategy shared among all employees within a system of care is important. what good is asking about ACE’s if you don’t have a strategy that is successful. And why do we think just talking to a Patient/Client will be successful. There are so many aspects of brain functioning and response, especially the fear system, that we aren’t considering in our healing strategies. For example, our Prefrontal Cortex is active only 2 to 10% of the time. Our subconscious is always active, and according to at least one source, only about .01% of our brains activity is conscious. My belief is that we need to find a way to put our subconscious mind to work, and that is where the 4th level of activity comes into play. Mediation, Emotional Freedom Technique, EMDR, Mindfulness and other brain training techniques are embraced here to help retrain our response to fear. And finally, I am mindful that some Patients/Clients have a higher level of need and will require expert medical/psychiatric assistance.

I am not doctrinaire in my approach. I put it out there for discussion. I believe it will work. I believe the question I am responding to is a good one. I still believe that Patients/Clients should have a confidential place to learn about and respond to their issues. But they should have a change to resolve them as well. I know that I wold certainly prefer to have that additional 20 years (or more) of life available to those with 6 or more ACE’s.

I am so glad you raised this question and have received such thoughtful repsonses.  Language creates reality and how we use words is so important especially around what Dr. Felliti described as 'deeply shaming'.  My concern with  screen (and I do use that term) is that I associate a short questionnaire and nothing else.  I appreciate Dr. Felitti's comment that "asking, listening and implicitly accepting' are key in administering an ACES screen/history? and  that that may be missing from conducting an ACE screen.   I wonder if we should create another term  so that the field 'rethinks' haw it uses the screen.  How about ACES stress index? 

The original ACE Questionnaire was 4 pages long, just covering the same 10 items in more detail for research purposes.  We created the one-page version for people to experiment with, so they could become familiar with the concepts.  At this point, I couldn't prove that one is better than the other.  The one-page version has been translated into over a dozen languages, including Icelandic. 

 

Since then, we distributed the 10 ACE questions through a ten-page general medical questionnaire that patients fill out at home before coming in for comprehensive medical evaluation.  We have done this on a huge scale and it has been highly acceptable as well as quite beneficial.

Lynn -- I've attached all four questionnaires here. The Family History female and male, and the Health Appraisal female and male. These are from the CDC's ACE Study site. 

Dr. Felitti, how does your original questionnaire differ from the 10-item screening tool being used many places now?  From little snippets I've seen (e.g., in the End It Now video), it appears that the original questionnaire was much broader and provided a more complete picture of one's childhood than the 10-item screen. 

Your point is well taken, Jane.  Inquiring about the Developmental Years should be part of a complete medical history on all persons, regardless of age or their 'success'.  What we learned from doing this with 440,000 adults over a multi-year period is that it can have significant benefits.  Specifically, many of these ACE experiences are deeply shaming.  It turns out that Asking, and Listening, and Implicitly Accepting are a powerful form of Doing.  The Swiss psychologist, Alice Miller, has referred to this as the role of the Enlightened Witness.  We found that routinely asking about ACEs led to a significant reduction in doctor visits and ER visits over the next year.  It seems that thus reducing a person's sense of chronic shame also significantly reduces stress-related symptoms in their lives, thereby reducing medical visits and costs.

 

We also found that initially asking about ACEs as part of an inert mechanism like a well-devised medical questionnaire filled out at home and not in the waiting room is a big step in the right direction.  It saves time, avoids interpersonal anxiety or clumsiness, and has been highly acceptable to both doctors and patients.  Even before meeting a patient, we had a clear idea where we needed to explore further and also didn't need to go.  In the exam room, our most common approach was, "I see on the questionnaire that ......  Can you tell me how that has affected you later in your life?"  And we listened.  And implicitly accepted that person as a worthwhile human being, their  having just told someone important to them about something they had carried as deeply shameful.  

Thanks for your comments, Heather, Lynn and Julie.

Melissa -- Last week I talked with someone who thought that schools would be a good place to educate parents about their own ACEs (since this is a two-, three-, four- and/or more generation attribute), starting the first day that a parent brings a child into school, as part of orientation. In trauma-informed schools, it could be used as a way of opening the door to family services. 

We have incorporated the ACES Screening tool as a part of the social history collected during testing for special education in a district in NJ that is committed to becoming trauma informed.

I agree, Jane, that is should be used as a history collecting opportunity.  We are not using it in schools as a part of determining classification, just as a way of collecting history.  But the information gathered does better inform the evaluation team as they discuss possible programs and intervention strategies.

My hope is that schools will begin incorporating it into their entrance to Kindergarten screenings by the nurse because (1) early intervention is key, and (2) Childhood adverse experiences are a public health crisis, not just a special education issue.

PS - SO excited to hear about all of the doctors who are becoming trauma informed.

I think it may vary by program depending on, as you say, Jane, whether the ACE is used as a screen to then assess further (which is the definition of screening - a short tool to determine the need for further assessment or testing), or whether it is the assessment itself. We're using the term assessment for now since we're using it for patient-physician awareness, education & resources, and not using it to assess any further or to determine program eligibility. 

Yes, absolutely.  Reducing the ACE topics to a 10-question screening tool does not provide the type of sensitive environment in which to explore a person's (often traumatic) childhood history.  Doing an "ACEs history" allows for conversation, exploration, holding space, and experiencing emotion.

Purely my own thoughts here, but I think "having a conversation" is definitely how a lot of people are addressing ACEs now and maybe that helps parents, children, and anyone else feel more comfortable about it. I would also think that the trust that's built in sharing that information - even if it's "just" through conversation - helps strengthen the relationship between family and provider, for the good. Just my 2 cents. Thanks for writing about this!

Thanks, Tina. Very interesting.

During a conversation last week, Denise Dowd in KC also supported this approach. 

I have been saying this for some time. In my rural areas there are no referral services if one screens high for ACEs.  I learned from Dr. Rosen to do the HEADSSS history with adolescents and there is the article "getting into adolescents heads."   I just started at a new rural clinic and saw a 16 year old for "anxiety". I could already tell there was gonna be a lot in the psychosocial history but being in a new job, I didn't want to use the ACEs screen and risk losing my job because no one yet gets why so I told the father and the teen that I had been taught to get a private history from the teen using the HEADSSS acronym

We went over each letter

h-home
e-education
a-activities
d-drugs and alcohol
s -suicidality
s-sexuality
s- spirituality

I let father know this was how peds take a history (ask questions from adolescents). So I asked about home - found out a lot there is a lot of DV, parental Mental Illness and hx of childhood adversity in parents, loss of a parent and very cherished brother recently, parental drug abuse, emotional abuse and emotional neglect. The only ACE I asked directly was whether the teen had been sexually abused. But even without asking the ACEs questions as such, I found that this teen had an ACE of at least 7.  We talked about how this stress could give her panic attacks and affects the brain and mind-body connection and went over apps for breathing, guided imagery, progressive muscle relaxation.   I didn't go into a lot of specifics at the time with father about how toxic stress affects kids---I could tell this wouldn't work yet. He and mom were the cause but it didn't rise to the level of a CPS report which would only alienate this new family from me.  I would have to develop better repore. However this teen, I know felt heard and understood and for me that is a start... We have a followup in two weeks. So a History is fine and you LEARN a ton just with the Hx. It really doesn't have to be systematic with the 10 plus questions ..... But if you set up your practice to screen and have referral resources.... And everyone is educated why this is important that works too!!! This approach is the same taken for implementation of SEEK (safe environment for every kid) in the office. On my iPhone but SEEK can be found from the University of Maryland website and can be used in a similar way. I think using the term history is good--- the ACE history is really components of the psychosocial hx we all learned to take now we just need to be true to our training and we will learn all about ACEs and it's really the toxic stress that does the damage and toxic stress whether it is a traditional ACE from the ACE study or one of the ACE plus stressors --- the brain, immune system and the epigenome do not care... So I think it may be easier to bring doctors and legislators on board if we are just taking a "history" ???

http://www2.aap.org/pubserv/ps...ges/files/headss.pdf