Waking Up to ACES – Neglect Edges into Awareness

The PTSD diagnosis only appeared in the DSM in 1980. To me that seems like an “augenblick” as my German mother used to say, the blink of an eye. I realize that many of my readers may not have been even a glimmer in anyone’s eye in 1980. By now “trauma informed” is almost cliché, on everyone’s lips, thanks in part to Bessel van der Kolk’s block buster book The Body Keeps the Score, which everyone has read. If you haven’t of course, you must, and you can find it in at least 10 languages if need be.

The PTSD designation was born out of the experiences of returning Vietnam veterans. Their devastating symptoms were stumping the VA as to how to help them. Many still wander around homeless and addicted, certainly in my area which is close to Haight Ashbury. The diagnosis was designed for young adult sufferers and pretty much only veterans could check all the boxes for diagnosis and treatment then.

At first we correlated the PTSD symptom profile with overtly physically violent life experiences. It later came to encompass traumatic events such as car accidents, and then domestic violence and rape. In the 90’s violence against women and children came to be understood as traumatic the culture began to recognize the prevalence of these. Before that even physicians in training had no clue that they might be looking for evidence of these incest for example, it was not anywhere in their medical training.

In 2010, Ruth Lanius et al quietly wrote another epic, The Impact of Early Life Trauma on Health and Disease. It is another must read but most people haven’t. In it Lanius and her co-authors widened the lens, to include a much wider range of life experiences that fit the definition and also the neuroscientific profile of traumatic experience; and also to include the medical impacts. In this book neglect shows up.

I have been studying neglect doggedly since about 1998. I am not a researcher so I have no evidence basis, just a treasure trove of anecdote,  and my own personal theory and practice. Fortunately, now Lanius and van der Kolk and others are presenting the evidence and even the visuals to demonstrate it. And it is all still slow. It is still a rare therapist that recognizes neglect. The clients themselves usually don’t, and because they are not aware that something “happened” to them, they wonder why they feel so bad, and therapists do too. Their missing story is about missing experiences, and it is difficult to see what is not there. I have found that clients who discover the neglect profile, and match their own feelings and patterns to it, have been so wildly relieved and grateful. That is why, I have been on a mission over these decades, to amass information and to share it.

In 1995, the mammoth medical group Kaiser Permanente, undertook a two-year study of what they called “Adverse Childhood Experiences” or ACES. They recruited 17,000 subjects, all drawn from their membership, which skewed the sample somewhat. The subjects were all employed and insured which implies a certain class affiliation; and so the researchers would not have expected to find what they did. The ACES encompassed among others:

  • experiencing violence, abuse, or neglect
  • witnessing violence in the home or community
  • having a family member attempt or die by suicide

Also included are aspects of the child’s environment that can undermine their sense of safety, stability, and bonding, such as growing up in a household with:

  • substance use problems
  • mental health problems
  • instability due to parental separation or household members being in jail or prison

The results were astonishing. 61% of the subjects had experienced at least one, and one in 6, had experienced four or more. Imagine if the study had included subjects of poor, unemployed and a wider range of backgrounds. And yes, neglect appears on the list. This was 1997, when the results went public. How come no one noticed. Now, like “trauma informed” which some of us were desperately trying to bring into the psychotherapy mainstream for years, the ACES are on everyone’s lips. Why did it take so long? And how many survivors of childhood neglect, have slipped through the cracks un-helped and remained invisible all this time?

For at least 5 years van der Kolk and his research group has fought to get “Developmental Trauma Disorder” (DTD) into the DSM. The last edition rejected it. So there is still no formal diagnostic category to legitimize it, and also to facilitate insurance re-imbursement. To my knowledge, developmental trauma is not yet part of graduate school curricula.

Now the list of traumatic experiences continues to grow. We are coming to understand “Minority Stress” ie the continuing threat and insult to identity of racism and discrimination, and the danger of violence it often includes; and “Moral Injury” which is the shame and grief associated with having committed unbearable acts oneself. This was a feature of the Pandemic, when health care workers were unable to save patients from dying; or had to choose who got the ventilator and who died; and of course war veterans and first responders who commit heinous acts against other human beings. These are traumatic experiences that bring similar brain aberrations and symptom patterns to those that we recognize.      

Thankfully the ACES study is coming to be known and considered, at last. Maybe Developmental Trauma will become recognized and understood, and clinicians will be learning about neglect. I’d like to see neglect come out of the shadows, and a vast population of invisible sufferers come into view at last

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