Discussion Group: April 2023
RESPONSE TO MCLEAN HOSPITAL GRAND ROUNDS VIDEO
We discussed the panel presentation from the fall virtual conference by ISSTD and that one of the panelists re-presented that presentation two weeks ago for Grand Rounds at McLean Hospital. The presentation video was put on YouTube, and we discussed the plural community response to the video. I referenced the Infinite Mind (Healing Together Conference) statement in response, which you can read HERE. In the System Speak community, I posted the following:
Fun Facts for NerdTown:
Standards for presentations are set by credentialing boards for continuing education, not the organizations that host them. These standards address general areas of content, timelines of presentations, and sources cited for presentations. While organizations have no way to preview the exact content of a presentation prior to it being given, they are able to receive feedback from clinicians who attend presentations. This feedback includes options for specific comments on content, as well as specific feedback on specific presenters. This is part of every presentation as the process by which clinicians receive their certificates. In this way, each attendee is responsible for the directions which presentations are planned and how conferences go.
As for unrelated diagnoses being discussed online some right now, malingering is a “z code” (descriptor of a symptom) rather than a diagnostic category, and Factitious Disorder is a diagnosis unrelated to dissociative disorders. These matter to the clinical community, however, because in many legal, disability, and insurance cases, clinicians are asked to distinguish between them.
“Imitative DID” is not a diagnosis, but is one of several ways the online phenomenon has been referenced in research literature over the last five years, in effort to distinguish these newer presentations online from traditional presentations in offices. This “imitative” diagnosis is also all a phenomenon seen in other unrelated diagnoses in recent years since the rise of social media, and has been looked at in several diagnoses, not just DID. It in no way means “invalid” or “not real”. Even an actual case of “imitative DID” does not mean the person is “bad” or “making it up”, but that the person’s underlying issues may be different than someone with DID and yet somehow found their presentation of DID to be a safer expression in seeking support.
It is important to understand that “imitative” does not mean “made up” or “fake”, but “mirroring” externally instead of internally. In traditional cases of DID, what is presented reflects (like a mirror) what the individual experienced in the past. This is fascinating because with abuse and neglect, we have had no mirror at all (Steve Gold episode), while people who are native technology users or have early access to social media seem to have each other as a mirror. It is something different than ever before. In newer cases of people who utilize social media, there are often reflections of each other because that is where their connection and support is, and those cases reflect very different presentations than traditional case - often more overt. It does not make them less valid. That would be like saying extroverts are less valid than introverts. It is merely noticing the presentations are different.
These diagnoses also matter when there is incongruence between what the person says and presents. For example, someone who is not distressed by their multiplicity, or who says it does not interfere with their functioning, does not actually meet criteria for a diagnosis of DID. This does not make them less multiple or plural or invalidate their experience. It just means it is something else - clinically, we want to figure out the something else so that we can support and help. There are some cool things I can show you about how to do this with the ICD codes that we cannot do with the DSM codes. We will talk about it on zoom sometime, and I will show you.
Back to the point… Such clinical curiosity and early study does NOT rule out DID. It simply makes explicit that there is a shift from traditional presenting DID. This shift appears to be a sociocultural shift because it happens primarily with those who utilize social media as part of their sociocultural experience in everyday life. These people have a very different presentation than people who do not use social media and present with traditional cases of DID. This is not a moral judgment of those presentations of DID, but a validation of the newer cases connected by social media. Social media connects people in ways like never before, which means they identify in communities like never before, which means it makes sense that mental health and identity issues are expressed like never before. This does not invalidate these expressions of Self or self states, but simply notices the pattern, and attempts to validate it, so that it can be studied and researched and properly treated and/or supported. Because the Plural population has only recently (compared to centuries) developed in identity, expression, and community, these presentations of DID have not yet been studied or researched. This means they do not fit traditional diagnoses simply because diagnostic codes are from study and research prior to these experiences presenting. It does not mean the experiences are less valid.
We want everyone’s experience validated. That includes noticing differences enough to make space for identifying them. Then we can build from there. It is good progress when clinicians are talking about this, and huge for it to breakthrough into presentations, even if also (holding both!) that is messy while they learn better how to do that well and safely. This has always been true in the history of medicine, which is something else to improve!
We do not in any way condone any clinician diagnosing or implying a diagnosis or denying a diagnosis of someone that they have not met or solely based on social media presentation. That being said, there are actual ethics and “rules” standardized in the research community for what and how to use public social media clips in trainings and presentations. It is a very common thing, and one of many risks of sharing “content” publicly. This has been something we have experienced with the vulnerability of the podcast. As people with a history of “childhood exploitation materials” (what used to be called child pornography), we would also love for these ethics to be changed and improved to consider consent - but that would happen in the venue of the ethicists. I, as an individual clinician, am welcome to learn this and adjust and do better and change on my own, but anywhere I present is required to go by the standards until those standards are changed - they literally cannot change until the standards do.
In addition, many clinicians are coming out of decades of having to defend dissociative disorders as valid at all due to organized attacks against lived experience and those who treat them. Part of this defense has been researching and confirming trauma as the source of traditional presentations of dissociative disorders, including identifying neurological biomarkers validating the diagnosis as legitimate. These studies have also identified trauma as the source of traditional presentations of DID. This is a huge breakthrough in the science of studying dissociative disorders, and distinguishes these as unique diagnoses different from malingering, factitious, personality, or other disorders - including different from cases of “imitative DID” or “fantasy model” (as called during the memory wars of the 90’s). This in no way invalidates other experiences or presentations which have not yet been studied. Lived experience can speak to unique and varied experiences, while the science lags behind in evidence. Discussing these newer presentations in literature and trainings is how we begin to validate them and educate about them. We want to do this ethically, and model that in our presentations, the same as we practice healthy and safe interactions in this community.
Dividing into camps of “we are good” and “they are bad” or “we are right” and “they are wrong” is binary thinking. This “othering” becomes contentious and adversarial, with potential for bullying. This reduced safety limits learning from both learned and lived experience.
The struggle with healing developmental trauma is learning to “hold both” (both-and, or finding the grey). It is learning to communicate effectively and advocate in ways that are meaningful. We highly recommend an upcoming episode with Laura Brown about “feminist rage” for more information about this - it was a great conversation.
This week on the podcast, in an episode entitled “Video Response”, we organized our response into three sections. First, we fleshed out that above statement with clinical information from a left brain cognitive context to help make the discussion safer to approach. Then we shared our more affective, right-brain experience of how it all unfolded and the impact it had on us. As part of that, we also shared a poem from another survivor and some of the comments they had shared in the community in response to the video (this was shared by request and with consent). Finally, in the closing of the episode, we shared an apology for the collective and historical trauma caused by our profession.
DID and Plurality
Following that up in our discussion, we explored the differences between presentations of those with DID and those who identify as Plural.
I explained the history of Plurality and how that became not only a culture but also a political movement in THIS PAPER. It was published in the European Journal of Trauma and Dissociation two years ago. It is free to access for anyone in case that is helpful
We discussed that traditional, traumatogenic cases of DID and OSDD are often more covert (or “masked”) presentations. The whole point is to NOT be seen or noticed. The whole point is to OVER function. The whole point is to fawn (be good to be safe) and to fly under the radar. Internally, there is phobia and avoidance of other self-states (parts or alters or whatever language you use). There may or may not be a known internal world that is usually related to early traumas in some way. There is little communication between self-states in the beginning, other than those who gatekeep or guard other self-states, either actively or punitively.
With newer cases of those who identify as plural, these are often more overt “systems”. They are “out and loud and proud” of their systems, and can seem to parade alters or parts easily, sometimes even without a change in self-state presentation. They know their system, they know each other internally, and the inner world is very detailed and complex. There may be hundreds of alters reported. They are almost always active on social media, either themselves or watching videos of others (or both). They often want a specific diagnosis, whether they fit criteria or not (we looked at how ICD-diagnoses are different than DSM diagnoses, and what makes it easier to meet their needs with ICD than with DSM).
We talked about how regardless of presentation, our role as therapists is addressing the pain and “where does it hurt” being the primary question. Being aware of plurality as a culture can be important as part of responsiveness and language sensitivity. It is important to understand that the clinical experience of “this is something else” is not the same as “this is not valid” - we must be present enough with our clients to be able to validate their experience in order to tend to any pain or offer support they need.
Resources for Clinicians
Someone shared they are a new clinician, and asked for resources to help them continue developing professionally.
We, of course, offer the System Speak podcast as one resource. There are the clinical interviews with the pioneers and experts in the field. There are the personal experiences of what has worked and not worked in therapy. There are powerful moments of when therapy goes right, and horrific moments of when therapy goes wrong - and what to do (and not do) about it. We have offered that as a resource so that therapy can be better for more people.
We also recommended joining the International Society for the Study of Trauma and Dissociation (ISSTD). This organization has historically been where the pioneers in the field and experts in research gather as colleagues with those of us just learning. It’s really a powerful resource. Their annual conference is coming up next week, and you can register to attend it virtually. They are also the ones who have researched and developed screening tools for dissociative disorders, and they have also developed treatment guidelines (updated version coming out Spring 2024), and you can access all of that for free even as a non-member HERE. They also have webinars fairly often through which you can get continuing education. In addition, they have a certification course for complex trauma and dissociative disorders through their Center for Advanced Studies (CFAS) that we highly recommend. ISSTD also offers dissociation-informed courses both in hypnosis and in EMDR.
The person asking this question also does EMDR, so we also recommended Jamie Marich and the Institute for Creative Mindfulness. Jamie Marich is public about her own OSDD diagnosis, and offers EMDR training from a lived experience perspective. She is a great advocate for the community. She is very anti-establishment and has no qualms about sharing why. She has also posted several responses to the McLean video issue that we talked about at the beginning of our discussion. She wrote one of the chapters in our book Perspectives of Dissociative Identity Response: Ethical, Historical, and Cultural Issues. She also recently released her qualitative research (grounded theory) book, Dissociation Made Simple, which is a collection of lived experience perspectives.
Another clinician asked about resources for helping a client who is visually impaired. We would recommend the Healing Together conference put on in Florida (or virtually) each January/February by An Infinite Mind. There are several visually impaired lived experience clinicians who speak there almost every year. For the clinician, we have a chapter on this written by a blind lived experience clinician in our book Perspectives of Dissociative Identity Response: Ethical, Historical, and Cultural Issues. I know a colleague who is blind that has also been willing to be interviewed for the podcast, but it just has not happened for scheduling yet. I will keep working on that.
Another clinician asked about resources for working with adolescents. We recommended the clinical guest episodes, specifically the one with Joyanna Silberg. Joyanna Silberg has also just released an updated version of their book, The Child Survivor. Another clinician in our discussion group recommended the text from the ISSTD course, Treating Complex Traumatic Stress Disorders in Children and Adolescents: Scientific Foundations and Therapeutic Models by Julian Ford and Christine Curtois. With the ISSTD membership, you can also join different special interest groups (SIGs) focused on different topics, and Child and Adolescents is one of them. In that group, I know that Jill Hosey (who was on the podcast if you want to listen to those two episodes) is leading the team on updating those treatment guidelines, as well.
Podcast Discussion
Someone shared that they listened to the Eli Somer episode. We talked about Eli’s (el-lee) work in Israel on “maladaptive daydreaming”, and his identifying a whole population of people who are dissociating intentionally. Some of these are gamers, some of these are role-playing games people, and some of these are just people who actively and intentionally use their imaginations intentionally to escape. Some of these identify as Plural and some do not have any experience of multiplicity. A high percentage of people in his studies reported they do maladaptive daydreaming due to social isolation. He uses “maladaptive” to describe coping skills that interfere with functioning, like holding a job or getting through school. You can read one of his papers for free HERE - it is about the intersection of this population with DID (his paper was written before Plurals had gathered to name themselves).
Someone else shared that they had listened to the episodes with Susan Pease Banitt. She has a book for clients and clinicians called The Trauma Toolkit, and a marvelous book for clinicians about attachment in the therapeutic relationship: Wisdom, Attachment, and Love in Trauma Therapist: Beyond Evidenced-Based Practice. That book includes more about what we discussed earlier in this group about how “trauma-informed” studies actually exclude those with significant trauma and/or dissociative disorders. It also includes a great introduction to some information about polyvagal theory and the brain (HPA Axis) response to trauma. She came on the podcast again later for another episode, in which she talked more specifically about some ritual abuse issues, and I think more about attachment, also. She also is someone who studies and talks about Reiki and also ancestral healing, if any of those issues are relevant to you (or if it helps you to know that going in to things if you follow her work).
CHALLENGE
Again, we challenged group members to choose one of the clinical interviews from the podcast (you can see a list HERE) to listen to before our next month’s discussion, and come ready to share something that was new to you, different from your own perspective, or new material that you learned.
You are also welcome to bring any case questions, podcast questions, or personal lived experience questions that you have. If there is something you want to ask anyonymously, you can submit it through the comment box on the System Speak podcast page - just be sure to say it is for this discussion group.
Our next “First Wednesdays” discussion group will meet May 3rd, 2023!
I also announced I will be doing an all day workshop on May 26th, which you can register for HERE.
CLICK HERE to return to the Discussion Group Monthly Recap page.