ACE’s: Proceed With Caution

I recently watched an online discussion about ACE’s and outcomes for the individual. As a survivor of childhood sexual abuse, it made me feel a bit uncomfortable. Trauma; how we react to trauma, and the consequences of trauma will vary between individuals. We are all different, and labelling trauma survivors must be done responsibly and with caution. Most would agree that support for trauma survivors is lacking and inconsistent and must be more widespread, but care should be taken when striving for a trauma-aware society, not to inadvertently end up with a one-size fits all model of care. 

Trauma-informed care is about connecting with a person-centred approach in order to meet the individual’s needs, and to prevent further harm and retraumatisation. If we rely too heavily on diagnostic tests, even the ones designed to recognise trauma, such as ACE’s, we risk overlooking the nuances that make us human. Just because we respond in similar ways to our childhood experiences, it mustn’t dictate that survivors are all defined by them in the same way, or that we all have to recover in a fixed and predictable pattern. Many are labelled as mentally disordered and for some (not all – remember we are all different) the labels such as EUPD/BPD are the cause of further stigma and distress. Some request their labels are changed to reflect trauma, but how long before ‘complex trauma’ patients are perceived as difficult, challenging or manipulative, simply because the system hasn’t progressed enough to cater for and adequately support these people?  

Research is important as it informs policy but it is paramount that this research is informed by the people who will benefit from it in the long-term. Creating as many opportunities for collaboration with survivors of abuse is essential. I am delighted to have been invited to join the open discussion on “towards a neurodevelopmentally aware, trauma-responsive Ireland” led by Jane Mulcahy, yet I’m also grappling with self-doubt. Why would these highly qualified researchers and academics be interested in what I have to say? When I, and others talk about our experiences of trauma, mental health or addiction, does it trigger unconscious bias? How do we speak in a way that prevents ‘othering’? My co-speaker and I script our talks and the reason for this is trauma. At the risk of labelling ourselves, we both have the tendency to dissociate if feeling overwhelmed or dysregulated. What if my voice decides to disappear, or my brain doesn’t cooperate and I can’t get the point across succinctly enough? Will allowances be made for me as a survivor of CSA or will I just be considered unprofessional? Do I even want these allowances to be made?

It would be inconceivable to have a debate or implement changes regarding racism, without those that racism directly impacts on. Misogyny can’t be challenged alone by a panel of men making the decisions, without hearing from women and their experiences. However, without men to also tackle the problem, women alone may not be able to challenge the culture either. 

The theme here is clear; change requires the implementation of applied research, using the lived experiences of those to be supported by that research. More importantly, when enough experiences are heard, it is easy to see that simply creating a list of desirable outcomes isn’t enough; the range of survivors’ needs is too varied to fit into one neat box. Perhaps it would be better to dispense with this overpowering need to categorise people by convenient labels, and instead tailor their care to their actual need by asking ‘what happened?’ and ‘how can we best support you now.?

This week I’ve had behind-the-scenes support from Alex O’Donnell – co-founder of Epione – an organisation raising awareness of psychological and social trauma and working towards creating a trauma-responsive society. He has nothing but encouragement for me, and for the work I’m doing, and his words once said over a virtual coffee: “All you have to do is take them on a journey” are in the forefront of my mind. Trauma may have set me on a different path to the one I once imagined; I may not have a degree or have had a career, but I do have experience that you simply cannot learn from a textbook. Because of the attitude of those willing to collaborate, listen and learn from us – not just study – this information can now be used in a way in help influence change.

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