Kathy Steele, International speaker on dissociative disorders, rejects the ANP and EP terms in favor of her own model. She uses “DL” for “daily living parts” (ANP’s), and “TF” for trauma-fixated parts (EP’s).
The other big research getting a lot of attention in the field of dissociative disorders is The Polyvagal Theory, which will also be discussed in future sessions of this conference. The vagus is a nerve that runs from the brain to all the major organs by branching out along the way, and so thus called the “polyvagal nerve”. We will talk about this more in depth in the session about this topic, but for now there are two things to know about this theory.
One is that it helps explain why “bottom up” approaches help survivors of trauma so much. “Bottom up” means working with the body itself through a variety of ways to help the amygdala regulate the physiologic response to trauma - even trauma in memory time being felt in now time. So “bottom up” approaches are things like meditation, yoga, EMDR, pet therapy, equine therapy, sand tray, art, sensory therapies, etc., as opposed to “top down” approaches like talk therapy that work through activating the medial prefrontal cortex. The best, and most effective, is a bit of both “top down” and “bottom up”.
The other thing that this theory brought to light is that healing from trauma and shame require a social aspect to the therapeutic approach. Healing requires connection with an Other. There has been an understanding that emotional safety is part of creating the space in which therapeutic work can happen and progress be made, but now that “emotional safety” is defined as including attunement, specifically. Attunement is being in tune with and reflected by an Other: being heard, being seen, feeling held in someone’s heart, and there being some level of reciprocity (see also The Body Keeps Score by Bessel Van Der Kolk, 2014).
But here’s the funny thing about The Polyvagal Theory being all the rage: it’s isn’t new! It’s not new at all! Stephen Porges introduced the idea all the way back in 1994!
That brings us to another piece of history to that matters: changes in the National Institute of Mental Health (in the United States) for funding research. The change started in 2010, with the “From Discovery to Cure” report, which basically stated that traditional research with traditional clinical trials and decades of follow-up research was simply too costly.
They simply stopped funding psychological and psychosocial research. Period.
Starting in 2014, they cut off all those projects, and now only funds neuroscience research.
This did two things.
First, it shifted funding back to biological and neurological research. This is why some of the brilliant psychological researchers of the 80’s and 90’s suddenly disappeared or started publishing research in other fields. They simply lost funding. It’s also why we saw the resurgence of research with things like the Polyvagal Theory, which was biological enough to count for funding, as well as new focus on new technology like functional MRI’s and neurofeedback.
The second thing it did was create opportunity for new people wanting fresh money now made available. The buzz word became “evidenced based”, which was a way to tie research back to science rather than psychological studies and experiments. At its best, that gave us some new techniques that have been really helpful and are widely accepted now; at its worst, it began a pattern for repackaged fad-therapies being branded and marketed as the latest thing and “evidence-based” but not actually including appropriate application or sample sizes or well-developed studies.
This has divided clinicians into two camps of thought, often with heated exchanges between them. One camp is the traditional therapies camp, who thinks the other group is simply out to make money from the funding and from clients by coming up with “miracle” cures that are short-term and fast-acting treatments, but don’t actually have any long term studies backing them up. The other camp is the new short-term therapies camp, who thinks the first group are the ones just trying to make money off of long-term treatments. Stuck in the middle are survivors themselves, either doubting or buying into these different treatments without really knowing what is best or how to even tell which approaches are best for them.
In addition, Susan Pease Banitt points out trauma studies cannot be “evidenced based” by the very nature of trauma. Evidence-based therapies only are studied for an average of six to nine months - because, remember, long-term studies lost funding. Extensive trauma histories will take longer than that to build enough safety and connection to even start disclosing trauma. Further, she also points out that trauma is often triggered by anniversary dates or external factors, so many issues may not even come up for a whole year into treatment.
This is not only bad practice, but also an injustice for the client, when poorly studied and barely tested models are being applied to trauma treatment for survivors who have already endured so much.
But not only do treatments change, the diagnosis itself continues to change. The upcoming release of ICD-11 will classify Dissociative Identity Disorder as:
Dissociative identity disorder is characterized by disruption of identity in which there are two or more distinct personality states (dissociative identities) associated with marked discontinuities in the sense of self and agency. Each personality state includes its own pattern of experiencing, perceiving, conceiving, and relating to self, the body, and the environment. At least two distinct personality states recurrently take executive control of the individual’s consciousness and functioning in interacting with others or with the environment, such as in the performance of specific aspects of daily life such as parenting, or work, or in response to specific situations (e.g., those that are perceived as threatening). Changes in personality state are accompanied by related alterations in sensation, perception, affect, cognition, memory, motor control, and behaviour. There are typically episodes of amnesia, which may be severe. The symptoms are not better explained by another mental, behavioural or neurodevelopmental disorder and are not due to the direct effects of a substance or medication on the central nervous system, including withdrawal effects, and are not due to a disease of the nervous system or a sleep-wake disorder. The symptoms result in significant impairment in personal, family, social, educational, occupational or other important areas of functioning.
It will also be adding a “partial dissociative identity disorder” diagnosis, presumably to replace OSDD. This diagnosis also contains new language regarding switching (ANP to EP) as a “dissociative intrusion”. It also refers to passive influence, or the influence of other alters without them presenting directly or fronting completely or co-consciously. While not yet confirmed, it appears based on common interpretation thus far that this distinguishes secondary dissociation as PDID (previously OSDD), and tertiary dissociation as DID explicitly. The ICD-11 will also shift fugue to a general “dissociative amnesia” category.
Despite the release of the DSM-5 two years later in 2013, the upcoming release of the ICD-11, the latest theory of structural dissociation, and the renewed emphasis on the Polyvagal Theory, the ISSTD still has not updated its guidelines since 2011 and even that update did not include any references or research past 2009. making their treatment guidelines outdated by an entire decade.
Our specific concerns in regards to this included the language of using the word “patients” instead of “clients”, the diagnostic manual changes, and the need for functional multiplicity to be included as a treatment option.
However, last week I spoke to Peter Barach, who helped write the treatment guidelines for the ISSTD, and asked him these questions directly. He responded in several helpful ways to communicate and explain the ISSTD stance on this issue. This is my understanding of his response (not quoting him directly - please refer to that podcast to hear him speak in his own words).
Most of the original treatment providers were medical doctors or psychiatrists, and the original context of the treatment guidelines were for insurance panels approving inpatient hospital stays. In these contexts, “patients” was the appropriate use of the word, which I concur based on my own years of working in hospitals and residential treatment programs.
The Latin roots for the word “clients” means “to lean on”, which ultimately made both clinicians and survivors uncomfortable with the use of that word, so “patients” remained the better option out of those choices.
The changes brought about by the DSM-5 were not the expected changes. It was expected that Developmental Trauma Disorder or Complex PTSD would be added as a diagnosis, and it wasn’t. This chain of events is described well in The Body Keeps Score (Bessel van der Kolk, M.D., 2014).
What did change in the DSM-5 was self-reporting symptoms becoming “acceptable” and DDNOS becoming OSDD; however, neither of these changes impacted treatment itself directly, and so did not require an update in the guidelines.
Functional multiplicity happens naturally already in the treatment process, as communication and cooperation improve as a system. In that way, most ethical and good therapists understand this as a goal for part of treatment, even if it is not explicitly stated in the guidelines. It should be expected that we attain this as part of the treatment process naturally, both through treatment itself and through our own work as a system that we do outside of or in addition to the treatment setting.
That said, functional multiplicity is not an “end goal” for treatment for two reasons, both of which are related to the ACE’s research and long-term follow-up studies which are new for the first time and were not available in the 80’s and 90’s. The first reason is that it leaves the survivor at a higher risk of being retraumatized or revictimized in some way, not because the survivor is not functioning with a positive quality of life, but because they remain in a dissociated state which leaves them - by definition - with decreased awareness of themselves and their surroundings in some ways. The second reason builds on that, in regards to both the liability and the ethics of “leaving” a client in that high risk state and a more vulnerable position.
Thus, from a perspective of beginning a conversation between the clinical and survivor communities about these issues, the survivor community is concerned about agency (ability to choose) and intentionality (the choice itself), while the clinical community is concerned about safety and increased adaptability (rather than continuing to rely soley on dissociation) . Survivors seem to voice an opinion that is in regards to quality of life and wanting to measure their own progress, while clinicians are expressing concerns regarding what would put that quality of life at risk.
While there are clearly some differences of opinions in these perspectives, the biggest “trigger” for survivors may simply be facing the “we know what’s good for you” approach that feels generally oppressive despite its reportedly good intentions. This may be what is more difficult to resolve than the differences themselves. Clinicians will need to find sensitive and respectful means to support the survivor during later phases of therapy, including ways to honor both agency and intentionality as part of the healing process. Survivors will need to continue to advocate for themselves in ways that effective, while also continuing to engage in the therapeutic process.
Finally, the latest research continues to be in neuroscience because it can get funding, and much of it is focusing on what we are learning from functional MRI’s. The first fMRI with documented switching was back in 1999 (Condie, D., Wu, M.T., Chang, I.W. (July 1999). Functional Magnetic Resonance Imaging of Personality Switches in a Woman with Dissociative Identity Disorder, Harvard Review of Psychiatry 7(2):119-22). Just a few months ago, in December of last year, the British Journal of Psychiatry released spectacular results on the fMRI studies. Neurscience news reported that fMRI’s “were able to distinguish, with 73% accuracy, neurobiological differences between those with dissociative identity disorder and those without the condition.” They wrote:
This research, using the largest ever sample of individuals with DID in a brain imaging study, is the first to demonstrate that individuals with DID can be distinguished from healthy individuals on the basis of their brain structure.
DID, formerly known as ‘multiple personality disorder’, is one of the most disputed and controversial mental health disorders, with serious problems around under-diagnosis and misdiagnosis. Many patients with DID share a history of years of misdiagnoses, inefficient pharmacological treatment and several hospitalisations.
Dr Simone Reinders, Senior Research Associate at the Department of Psychological Medicine, Institute of Psychiatry, Psychology & Neuroscience, King’s College London led the multi-centre study involving two centres from the Netherlands, the University Medical Centre in Groningen and the Amsterdam Medical Centre, and one from Switzerland, the University Hospital in Zurich.
Commenting on the research, Dr Reinders said: “DID diagnosis is controversial and individuals with DID are often misdiagnosed. From the moment of seeking treatment for symptoms, to the time of an accurate diagnosis of DID, individuals receive an average of four misdiagnoses and spend seven years in mental health services.
“The findings of our present study are important because they provide the first evidence of a biological basis for distinguishing between individuals with DID and healthy individuals. Ultimately, the application of pattern recognition techniques could prevent unnecessary suffering through earlier and more accurate diagnosis, facilitating faster and more targeted therapeutic interventions.”
Further, using what has been learned from polyvagal theory, shame theory, and structural dissociation theory, there is renewed interest in the actual neurobiologic mechanisms of how DID develops. Some of this also builds on fMRI’s, where brain structural changes are noted. In DID, reduced volumes in the amygdala and hippocampus (Vermetten E, Schmahl C, Lindner S, Loewenstein RJ, Bremner JD, 2006) and parahippocampus (Ehling, T., Nijenhuis, E.R., Krikke, AP., 2008) were found. Smaller hippocampal volumes may be related to early life trauma: the hippocampus has a high density of glucocorticoid receptors and is highly sensitive to a heightened release of the stress hormone cortisol—therefore, chronic traumatic stress may lead to cell damage in this area (Bremner, J.D., 2006; 2009, 1999). Reduced hippocampal volumes in PTSD may therefore stem from a history of trauma rather than specific to the diagnosis (Daniels, J.K., Frewen, P., Theberge , J, Lanius R.A., 2016; Karl, A., Schaefer, M., Malta, L.S., Dorfel, D., Rohleder, N., Werner, A., 2006; Woon F.L., Hedges, D.W., 2009; Nardo, D., Hogberg, G., Lanius, R.A., Jacobsson, H., Jonsson, C., Hallstrom, T., et al., 2013).
Building on this, there is a “Coalescence Theory” that explains how the structure of DID happens neurophysiologically. This theory links Default Mode Network (DMN) to both default mechanisms and altered states of consciousness. The DMN is a group of interactive brain regions whose activity is highly correlated (they work all at once together) (Buckner, R. L.; Andrews-Hanna, J. R.; Schacter, D. L., 2008). Bouncing back from earlier criticism, the DMN has now been mapped not only on fMRI’s, but also PET scans and electrocorticography. The DMN is most active during “wakeful rest” such as daydreaming, mind-wandering, and dissociation. Thanks to recent fMRI research, we now know the DMN also contributes to aspects of experiencing one’s role externally, as well as the ability to think about ourselves and remember the past. In the infant brain, there is limited evidence of the default network, but default network connectivity is more consistent in children aged 9–12 years, suggesting that the default network undergoes developmental change (Broyd, Samantha J.; Demanuele, Charmaine; Debener, Stefan; Helps, Suzannah K.; James, Christopher J.; Sonuga-Barke, Edmund J. S., 2009). This seems to confirm theories about extreme trauma responses prior to age 9 developing as DID, and trauma responses after age 9 developing as personality disorders.
CALL FOR RENEWAL:
There are many differences amongst us in the community. DID presents differently in everyone, and is experienced differently by everyone. Some of us have been working at our healing for many years, while others of us are just getting started. Still others don’t yet remember trauma, while others deny having any trauma background at all. Sometimes our awareness changes simply depending on who is out.
But today, this weekend, at this first counter conference, we unite together to use our voice in a way like never before.
We stand together against being silenced by clinicians who are neither properly educated nor properly trained.
We stand together against being silenced by government funding agencies who ignore our declarations that they have long been part of the problem - and, in some cases, caused the problem.
We stand together against being silenced by dissension in research camps where politics argue over money like fighting parents, where funding unethically determines access to services, and where clinical pirates reproduce old research for credit and money at the expense of our healing being put on hold for decades.
We raise our voices to say, “Nothing for us, without us!”
This was our discussion at the recent Infinite Mind conference in Florida, when 15 plural systems met together over several days that weekend to discuss concerns experienced while at the conference:
Sign language interpreters were refused, and alternative handouts and transcripts promised were never provided, and videos used (like on the ISSTD website also) were not captioned, despite that being federal law as well, for years now, all together making the conference inaccessible to Deaf and hard of hearing survivors;
Seeing-eye dogs were twice kicked out of the conference, and powerpoint presentations did not include image descriptions, making the conference inaccessible to the blind and visually impaired survivors in attendance;
Following these slights and legal violations against the disability community, that conference organizer was asked to present about disability and trauma at the ISSTD conference this weekend, rather than someone from the disability community themselves, which again is cultural appropriation;
Presenters openly mocked animal, feral, fictive, alien alters during their presentations, despite redirection by survivors that the appropriate term for these are “non-human alters”, and without consideration that any such introjects would have developed in the minds of intelligent and creative children based on their own unique traumatic experiences as well as their own specific cultural references growing up in the 1990’s and 2000’s - which provides a very different presentation than those who grew up in the 60’s and 70’s and 80’s, but makes them no less legitimate;
Presenters continue to follow the ISSTD Treatment Guidelines which state that survivors ought to be isolated from each other, with no contact outside of group, and present themselves as both dismissive and disrespectful to those who do attempt to educate and connect and support other survivors; and
Presenters and organizations are attempting to aggregate and monetize online educational resources, which is unethical appropriation… and worse, feels like organizational abuse, which many of us have already endured, as our call for information and access and connection is dismissed while they then take control of disseminating information and resources while excluding those of us who have been doing it already for years.
This is not 1980.
It’s been more than forty years since 1980.
More than half of your survivors were barely even born in 1980.
DID is not going to look the same, sound the same, or present the same now as it did in 1980 because those clients grew up in the 1940’s and 1950’s and 1960’s. The cause may be the same, and the process may be the same, but the presentation comes in a whole new generation - four decades later. Introjects look different, persecutors look different, and inner worlds look different. That doesn’t make any of it less valid, and it is cruel and re-traumatizing for anyone to dismiss survivors because the culture we grew up in and had access to during childhood and adolescence was different than it was almost a hundred years ago.
It’s 2019. More than half of us grew up in the 80’s and 90’s and 2000’s and 2010’s.
This is the digital world, and you cannot keep us isolated from each other. We no longer grow up in a world never having met someone like us. DID is everywhere. It is mis-portrayed in mass media, misunderstood by pop culture, and mis-represented by old texts and outdated treatment models.
We are survivors, keen on discernment and gifted with hypervigilance. We grew up in the digital age, and we know that not everything on YouTube is true, and not every DID channel is real. We know there is a difference between those who share their stories online in helpful and educated ways and those who fake it for click bait and quick money. We know that some support groups on Facebook will be healthy peer support like no other place available to us, while others are nasty pools of trauma dumping. We know that Twitter and Reddit and Tumblr can be opportunities for connection and education and advocacy, or places of terrifying drama and cyber-bulling. We already know these things, and most of us can discern the difference.
Stand with us, instead of leaving us alone in it.
Collaborate, instead of letting us drown on our own.
Teach us, instead of dismissing us.
Empower us to heal, even through connection and attunement, which is exactly the message of all the latest research on shame.
We are just asking you to see us, and hear us, and to please not become the bad guys.
We agree with the concern of a person or system or part of a system over-identifying with their role online, rather than progression through the healing journey, so support us as we focus on the healing aspects such as communication, cooperation, and collaboration - inside and outside the system.
These issues are not only the modern age of clinical cultural competence, but also an opportunity for compassion.
This is what led us to organize this counter-conference, intentionally timing it simultaneously with the ISSTD conference happening this weekend in New York.
Let me clear. We are not protesting that conference, nor we arguing against the ISSTD.
We declare our legal rights for accessible treatments and trainings, as well as our ethical right to culturally competent treatment for these new generations.
Some of the issues we would like addressed by the clinical community include the following:
The decade old Treatment Guidelines by the ISSTD need to be updated, such as “patients” should be changed to “clients” or “survivors” (while we now understand their origin better, it has been decades since the hospitals were closed, and we are not a generation that grew up inpatient, and “client” has a more modern feel despite its unfortunate Latin roots; research should be updated; terminology for non-human alters clarified; functional multiplicity included as a viable and valid treatment outcome -or at least acknowledged as part of the process; and using other language such as “metabolizing” experiences (Lynne Harris) rather than “integrating” them, now that integration has such a negative connotation that it's actually become triggering verbiage in and of itself.
While we understand the difficulty with “parts” language and the need for emphasis of the functional whole, and we do even agree that the term “emotional parts” is severely limited, “trauma-fixated parts” is not a valid replacement for the EP term due to the inference of intentionality (implies blame, which is shaming), and those parts stuck in time or trauma loops is not the same as “fixating” on their trauma, nor is it helpful for those parts to be shamed further for their experience.
The general attitude regarding survivors having contact with each other needs to change, especially in regards to the online community. For years we have been isolated from each other and it was recommended we not have contact with one another. There is no other physical or mental illness given those recommendations. All other physical and mental illnesses include treatment recommendations for support groups and community of others who understand - which is consistent with the most recent research on attunement and shame and healing through connection. We understand that isolating only within that group is not healthy, as mentioned under the “Safety and Reciprocity” sub-heading in chapter five of The Body Keeps Score. But these generations growing up online anyway cannot be expected not to reach out and find others who understand them, and its culturally incompetent to expect that. What would be more helpful would be supporting those who are trying to do it well, and providing safe places, and disseminating accurate information as best they can to so many desperate for resources. We know not everything on the internet is true, or real, or safe, and we are probably better than you are at spotting abusers. Let us have our safe spaces in which we can rest and connect with others who understand. When you have those rare occasions of those who “copy cat” others that they witness online, then treat them as you would any introject - just like from a parenting figure or a comic book or a book… this generation of introjects is digitally based and a very different presentation than those twenty years ago. It doesn’t make them less real or less valid or less important.
We know, in differing degrees, but especially once we have been in therapy, that we are “parts of a whole”. Please interact with us as we present, just like you would for any other client. There is a reason why we function that way as a system, and listening to us will help you understand us more, and help us trust you more quickly.
Please stop referring to working with individual parts as “joining the delusion” - dissociation is not the same as a delusion, and it is oppressive and shaming when you say so, which is a rupture to our connection with you.
Emphasize more in your education, and trainings, and publications, that healing is a journey. Kathy Steele said that integration is not a fixed moment, but a process, and no different for you than for us - other than our dissociated starting place. You aren’t finished, either, so have some empathy for us and compassion for our struggle with the process. None of us are the same person we were yesterday. Metabolizing experiences, feelings, and memories should be the focus of therapeutic work, along with safety and stabilization (including sensorimotor / physical grounding work), as well as compassion and connection to address shame issues. This is what brings about functional multiplicity, and improves both internal and external communication, cooperation, and collaboration. I like what Peter Barach told me last week, that David Caul had said: “it seems to me that after treatment, you want a functional unit, be it a corporation, a partnership, or a one-owner business”.
We stand with those clinicians who see us, and hear us, and treat us ethically and compassionately.
We stand with those clinicians who do their own work enough not to be offended by the cultural shifts in dissociative presentations, the expression of DID in younger generations with different cultural experiences to draw on as they dissociate, and new styles of introjects based on global access to digital literature.
We stand with those clinicians who are receptive to feedback, who share the reigns with new and qualified colleagues, and who collaborate within the community as a whole, and not just the professional world as a place to hide or establish power over those already victimized.
We stand with those organizations who respond to feedback, who include survivors on their boards and advisory panels, and who support fresh ideas for connection and healing instead of dividing the community further.
And we are calling for a renewal, to reclaim our healing environment from the last twenty years, and pleading for a bridge to be built between the clinical and survivor communities.
We don’t need you to be magic. We don’t need you to integrate us into one. We have never asked for any of that. Some may choose it, but it ought not be forced on any of us. Nothing should be forced on any of us.
We want to be safe.
We want to feel connected.
We want to be able to function, and have access to all parts (aspects) of our lives.
Plurality doesn’t bother us; we have always been this way. It takes ages to get diagnosed, even longer to find a good therapist, and even longer to get well. Being plural isn’t even the hard part about DID.
What bothers us is the getting hurt, and the not knowing, and the shame.
And when you stop and think about the current DSM-5 criteria, Dissociative Identity Disorder is only a disorder when you are distressed by it and can’t function.
Help us not to be so distressed. Help us function. Then we won’t be disordered.
We can handle the rest.
There’s a lot of positivity about being Plural.
CLICK HERE FOR THE PLURAL POSITIVITY WORLD CONFERENCE 2019 SCHEDULE OF EVENTS & SESSIONS
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