Hi Parenting with ACEs Community:
There's always a lot of discussion about if, how, when and where the ACEs survey should be shared with people and it's an important topic. I get that it's sensitive.
How medical providers share, is of course, an important discussion for medical providers to have (and ideally WITH patients, staff and medical providers guiding each other about what works best and is trauma-informed for all).
IF medical providers share about the ACEs study and research, on the other hand, is not something I believe medical providers get to decide. This is public health information that all people are entitled to receive.
This isn't privileged information that anyone gets to be the gatekeepers of. It belongs to all of us. That fact that the information may be awkward, uncomfortable and difficult to share is not a reason not to share. If that were the case none of us would ever get a gyn exam or be educated about birth control or sexually transmitted diseases. But we are, as early our teens because it's important information for humans - all humans.
The same can be said about ACEs research and science.
Teens and parents to be, especially, can benefit from knowing about ACEs and ACEs science.
There are real and documented health risks that we need to be aware of and real and documented risks for our kids as well because of the way ACEs are so often intergenerational.
Knowing about ACEs research helps me know a whole lot and that's true whether not I share or show anyone my actual and individual ACE score.
As a parent or parent to be, knowing if we are at higher risks at virtually every phase of our human development, as relates to our childhood experiences. To become alert, early about this research allows US to make choices and do what we can with that information and if that alone is all that happens, that is critical, important and potentially life-changing and life-saving information.
Why on earth would anyone not share this? I don't understand, which doesn't mean I can't be made or helped to understand, only that to date, I don't.
How can anyone believe not sharing benefits patients, parents and people or that doing so is protective? I've heard some say that this information is too hard or upsetting for us to handle? To me, that's insulting almost beyond comprehension.
Living through ACEs without support, information or context is hard. Learning about ACEs is not hard.
I arrived to adulthood not knowing that 1 in 3 people have had no adverse childhood experiences. I believed, that like me most people had similar experiences and high ACE scores. How would I know different. If I'm in a family with lots of ACEs, chances most in my family have had lots of ACEs too. So, to some families, living with lots of ACEs is normal and how life is.
I'm still shocked that anyone had a childhood without a single ACE and that most people have less than five because that's not true in my world and my circles.
So when I learned about the ACE study I saw that those with no or low ACEs have minimal health risks compared with those with lots. That's life-changing information.
I'd always believed that what made me struggle so much wasn't the ACEs I was burdened with early and often as a kid. I thought something was wrong with me. That's a dangerous misconception I had and it was immediately remedied when I learned about ACEs.
If there was an evidence-based intervention that challenged the faulty beliefs of those with PTSD and worked that fast someone would be making millions. And yet, these shame-reducing facts are treated as if they are dangerous.
Why?
Learning about ACEs research changed how I viewed myself, my parents and my own parenting. It provided me a huge and wide context I had not had before and it's why I work here now. I'd been living with, writing about and healing from post-traumatic stress for all of my adult life and had never learned about ACEs.
It was infuriating to me and I believe all have a right to know about ACEs research and the ACEs study. The if, when or how to do an ACEs test, to me, gets far too much attention because that's just one small part of the ACEs equation and the ACEs aha's that people can get from learning about ACEs science.
To be sure, as a child and an adult, I did not think, "This anxiety is a symptom of toxic stress that was not buffered enough by protective factors." I didn't think, "I better get to lots of evidence based interventions as soon as I can."
I thought life and people suck and suck hard and living was basically a suck fest I should try to endure as best I could.
Knowing facts and context and our own higher risks allows us to adjust some of our own lifestyle choices. Knowing that the way we were parented isn't necessarily optimal or ideal is in and of itself an intervention because it allows to consider a large body of evidence and new and different ways of being and parenting because we can see that they provide our kids with healthier outcomes.
That's an intervention. That is positive and productive and social change action.
It doesn't mean making changes is easy but it helps us understand what direction change needs to move in.
Those with no/low ACEs are advantaged. Those with low/no ACEs have better health outcomes, less physical and mental health issues.
I arrived to parenting not knowing that those with an ACE score of 0 are much less likely to die by suicide, be prescribed antidepressants or even to be raped, violated or abused as adults and why.
That's important information.
It helps me know two things.
1. People with my history are at greater risk and may struggle more with a host of issues. That allows me to feel validated, less alone and to screen myself and keep aware of others in my life with high ACE scores.
2. It motivates me to make sure my own kid has the lowest ACE score possible.
That's not depressing.
The current medical model is depressing.
Getting an IPad and being asked in the waiting room while on a visit to get a refill for antidepressants about all of my symptoms, without any context at all for how common symptoms are for people with high ACEs - that's depressing.
Getting a label and a diagnosis without understanding context or how to change things in the future is depressing.
ACEs research was never conveyed to me in a one on one therapy setting where the talk was entirely about me, my issues and problems and symptoms and struggles. We personalize symptoms and problems, diagnose and label those and people with them and do so without providing a public health perspective or data about how much life easier for those with low or no ACEs.
How does that benefit anyone?
It seems to me that it shames rather than supports people, in general, and parents in particular.
I was furious when I learned that the ACEs study had been out since the late 1990's and I'd not heard about it from a therapist, nurse, doctor, teacher or in mainstream media. In fact, I only heard about when at a conference about the treatment of trauma but had not heard it once as someone with post-traumatic stress disorder.
This information isn't only for public health officials, researchers or those who work with trauma survivors. It belongs to all of us.
Everyone is entitled to this information.
It's up to us if or how we use it after it's been shared.
We as individuals and as parents can share it directly with one another and all of our friends, family, neighbors and everyone we come in to contact with. We can do this in our daily lives as citizens who go to work or school, when in our neighborhoods and homes and communities. We don't have to ask anyone permission or share, get an advanced degree or treat it as though it's sacred or "triggering" or dangerous information like toxic blood that can only be handled by trained professionals. It isn't.
Just as we all learn about the flu, vaccines, sexual and reproductive health and education we are capable of learning about ACEs.
ACEs have already happened and that's the part that is hard not learning about their impact. We are not all impacted in the same ways, of course, because we are individuals and different. And there's a whole lot we can do to heal, recover, get healthier and happier as individuals, families and a society but only if we are diagnosing and treating the cause and not symptoms.
We can't do that if we are too afraid to talk and share and be real with one another about what many people have lived through and will live with as a consequence. These conversations belong to all of us, not just clinical or medical professionals.
P.S. There's a great question/discussion that came up on the main site about Preeclampsia, cortisol & ACEs? If you have thoughts, stories, experiences or research to share, please do so. Here's a link to an article that was shared by Karen Clemmer about ACEs and spontaneous pre-term birth which I'd not seen. Let's keep sharing stories, research and solutions with one another!
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