While this is a Plural Positivity World Conference, I have been asked specifically to speak about the history of Dissociative Identity Disorder (DID) as we understand it thus far. The history of DID is in almost every book about it, but none of them are exhaustive.
While we can review these early cases and the first diagnosis with the “multiple personality” label, it is wrong to assume that these were the earliest cases or experiences. The case studies given credit for the identification and categorizing are only the first to formally document and label them according to modern science as we understand it now and with records available. It does not mean that these pioneers in treating dissociation “invented” it, or that these were the first cases of it. It should be assumed that cases of dissociative identity disorder have been around as long as people (and trauma) have existed.
In her 2019 book, Rachel Robertson reports the history of DID goes back at least 4,000 years. Ancient cultures describe many cases of dissociative identity disorder through their stories and art. Many of these are reframed as “demonic possession” or misrepresented through Westernized and Christianized documents. Some cultures still view their healers and shamans as multiple, without it even having any negative connotation, until they were persecuted through genocide by Western religions such as three hundred years of Inquisition. But for the sake of today’s discussion, and to answer the question about why we even need a “counter conference” in an appeal to the ISSTD and its conference currently happening in New York this year (2019), we will focus on more recent history and the Western medicine perspective.
In 1584, Jeanne Fery was the first woman to document her own case of multiple personalities, though these words were not yet used as diagnostic labels. Her documentation preserves the early identification of symptoms that correlate with the modern diagnosis, including multiple alters with their own names and identities, lists of each of their features, and descriptions of their different roles. She described protector personalities, persecutory personalities, and child personalities. These personalities were associated with different sets of behaviors that ranged from self-harm to helping her heal to disordered eating. They all had their own voices, both when she spoke and inside her head. They all had different knowledges, capacities, and skill sets. She herself documented that they resulted from childhood abuse.
Jeanne Fery’s account in a now-ancient text is no different than modern day blog, podcast, or YouTube video series. What feels like validated history to an outsider, seems very familiar to those of us who are survivors. Those of us who share our stories do it to document our progress and make sense of our experiences, not to garner attention from people already too quick to judge or dismiss us.
Ten years after Jeanne Fery, Paracelsus was born in 1541, and grew up to be a Swiss physician, alchemist, and astrologer of the German Renaissance.. He was a pioneer in several aspects of the "medical revolution" of the Renaissance, and lectured at the University of Basel. He spoke and published about a woman who had “amnesia about an alternate personality who stole her money”.
This feels very reminiscent of the modern day case study such as those often shared at clinical or public conferences.
In 1623, the story of Sister Benedetta was published. Sister Benedetta was a woman who was supposedly possessed by three angelic boys who would beat her to cause chronic pain. When they took control of her body, each would speak with a different dialect and tone of voice while using different facial expressions. Benedetta had amnesia for some of their actions, including a sexual relationship that they had initiated. Like Jeanne Fery, Sister Benedetta suffered from self harm and disordered eating. Her parents had also shown signs of dissociation and had been rumored to be possessed, and one of the “angels” was frozen at age 9, the same age at which Sister Benedetta's father had died. Her symptoms had become uncontrollable, and she had been sent to the convent (van der Hart, Lierens, Goodwin, 1996).
“Angels” were the fictives of the 1600’s. Taken from religious texts and cultural experiences and religious beliefs, these characters were apparent alters but in non-human form, much like the “dragons” and “aliens” and “wolves” introjected from modern day cultural exposure.
In 1791, Eberhardt Gmelin published the first known detailed case study of multiple personality, which he called “exchanged personality” in reference to the switching between two or more personalities. The 20-year-old German woman could speak perfect French and speak German with a French accent when she was “the French Woman”, but only knew German when she was “the German Woman”. The French Woman knew everything the German woman did, but the German Woman didn’t know what happened to her while the French Woman was out. Eventually these two could switch intentionally when prompted by him, but only after some time working together - they could not do so early in their discovery.
The judgments for and against this case feel like those that come by harsh clinicians who don’t believe in DID, or from cold clinicians behind microphones that don’t like when DID that looks different than their expertise, or even from within the DID community itself - when survivors cruelly compare stories and judge themselves or each other when in reality they have had different experiences and are in different stages of healing.
Benjamin Rush is known as the “Father of American Psychiatry”, and was the only signer of both the Declaration of Independence and the Constitution. He was the chief surgeon of the continental army, and worked with many children and adults who suffered trauma because of the war. In 1809, he published a four volume set of books about treating mind disorders, called “Medical Inquiries and Observations of the Mind”. In these essays, Dr. Rush included the concept of multiple personalities, which he referred to as a “doubling of consciousness”. He reasoned that the cause of this happening in trauma patients was a “disconnection between the two hemispheres of the brain”.
This was our first sign of hope, that the shame of the impact of DID was not entirely ours to carry, and the first validation we received of the neurobiological impact of trauma.
In 1811, Samuel Mitchel identified both Mary Reynolds and Rachel Baker as multiple personality patients. The most famous was Mary, whom he first wrote about in 1816, with a description of Mary’s symptoms as “preaching in her sleep, as well as writing poetry and music.” While none of those activities are in and of themselves signs of mental illness, these were unusual behaviors for her and activities she was otherwise unable to do.
Dr. Mitchel expanded on this account in 1860, in an article entitled “The Strange Case of Mary Reynolds” in “Harper’s New Monthly Magazine“. In this account, he reported that Mary was born to a devout family in England in 1785. The family later moved to Pennsylvania, and she grew up as a “reserved and quiet and melancholy child”. Then, inexplicably, she became blind and deaf for six weeks at age 19. Three months following this, she “suddenly forgot things she had learned”, even having to re-learn how to read and write. No longer a reserved and melancholy child, Dr. Mitchel described her now as “buoyant, witty, fond of company, and a lover of nature.” Then, just as inexplicably, she reverted back to her quiet and melancholy self, without memory of either of the other two incidents. Dr. Mitchell reported that Mary Reynolds seemed to alternate these three identities, with no memory shared between them, for the next sixteen years. She then maintained her “more excited” state until her death at age 61, but still without recall of what she experienced during the other two states of consciousness.
This was the first case study that described some of the more functional aspects of multiplicity, that many of the separately developed talents and skills are just as valid and not unusual or maladaptive in and of themselves.
In 1840, Antoine Despine published a monograph that documented the story of an 11-year-old Swiss girl, Estelle, who initially presented with paralysis and sensitivity to touch. She later displayed another personality who was quite different, could walk, liked to play, and could not tolerate her mother’s presence. Despine documented his treatment course, which he reported cured the child, and many of which are recognized as valid still today.
This was the early description of our body memories, of our differing abilities based on the trauma response in the brain and which parts are active, and the connection between the severity of the impact of Adverse Childhood Experiences and chronic pain illness and autoimmune disorders.
Eugene Azam, a professor of neurology with a large interest in hypnosis, published the most detailed account of multiple personality in the 1800’s. The woman, Felida X, had three different personalities and he detailed what they acted like, who they were, and what caused them to appear.
Felida X was born in 1843, lost her father in infancy and had a difficult childhood. She exhibited three different personalities, each considering itself to be Felida's normal state and the others to be abnormal. The second personality state first manifested when Felida was 13 years old and suffered none of the physical illnesses that the first personality suffered. Initially, switching was reported to happen almost every day after a pain in the temple and a profound sleep for two to three minutes but the frequency of switching decreased over time to the point that it would happen only every 25 to 30 days and last only a few hours at a time. The third personality, which appeared only on occasion, suffered from anxiety attacks and hallucinations. At one point, the first personality was pregnant without explanation and the second personality emerged and took responsibility for the pregnancy.
Still, even after a great deal of research into the idea of multiple personalities, people who had symptoms like those of dissociative identity disorder were either seen as having epileptic fits or being possessed. He followed the case for 35 years, and published his book about “alternating personalities” in the “double consciousness” in 1887.
This is the early documentation as alters not just presenting as real, but perceiving themselves as real within their own awareness and consciousness. It is documentation of interactions that hint at an inner world with rules and codes and dynamics by which they lived and took turns, whether that was revealed or known or not. It tells the story of explicit switching and passive influence and natural consequences for a shared body.
In 1882, the first person officially diagnosed with Multiple Personality Disorder, instead of the previously French diagnosis of “double personality” was Louis Auguste Vivet. He had been physically abused and neglected as a child and had frequent “attacks of hysteria.” One such these occurred when he was 17 and bitten by a snake. He lost use of his legs for almost one year, and when the use returned after a 50 hour attack, he didn’t remember any of the physicians who had been treating him in an asylum for the last month or any of his fellow patients. His manner, morals, and appetite were different as well. Following additional attacks, the next year, his character would change from impulsive and dangerous to calm and gentle. In 1884, he had another attack that left him gentle of manner but unable to walk, and yet another attack returned the use of his legs but left him quarrelsome and inclined to steal as he had done as a child in order to survive. Amnesia for intervals spanning episodes was noted. By 1888, he had been recorded as having 10 personality states, each of which were different in character, memory, and somatic symptoms (Faure, Kersten, Koopman, & Van der Hart, 1997).
This case study tells the story of individual alters, followed and observed over long periods of time, detailing their individuality, their reality, and even their humanity. This was not the delusion of one dominant personality creating a bunch of lesser ones. This was a group of distinct insiders sharing a body, taking distinct turns fronting.
In 1918, multiple personalities were first acknowledged in the predecessor of the DSM under Hysterical Psychoneuroses, a subgroup of Psychoneuroses and Neuroses that included alternate states of consciousness acting on normally unknown desires, amnesia, and sensory and motor disturbances (“Statistical Manual for the use of Institutions for the Insane,” 1918).
In 1919, Pierre Janet published his work, Les Médications Psychologiques, which included several detailed accounts of multiple personalities. One was the story of Leonie, a poor and “mundane” woman trapped in married life. When Janet began hypnotic regression, she underwent an unprecedented metamorphosis into a lively, boisterous, and sarcastic woman who emphatically repudiated all associations with the ‘normative’ stream of consciousness. As if having escaped her prison, the second personality evoked her quick-wittedness and intellectual superiority in claimed biological and psychological independence from the first; her argument rested on the internal perspective that the cerebral chasm separating the two was far too great to assume that they were one and the same person. She even said that her children belonged to her but that the husband was a complete stranger. In time, a third personality materialized, and she was far more narcissistic and pejorative, even referring to the first personality as “a good and stupid woman, but not me” and the second as “a crazy creature”. After seven months of working with her, Janet realized that the fragmented personality system resembled an actualization hierarchy: the third alter knew about the second and the first; the second only about the first; and the first was completely oblivious of the existence of the others.
Leonie appeared to have three or more personality states including a child alter named Nichette, a childhood name. In the case of Lucie, who also reportedly had three personality states, there was an alter personality named Adrienne who would seem to experience flashbacks of a traumatic childhood event. In the case of Rose, she would suffer from a variety of somnambulistic states. In some, she was paralyzed and in others she was able to walk.
Janet wrote extensively about traumatic memories (primary idées fixes), and how these memories could be subdivided and so cause functional loss, but also cause sensorimotor and perceptual changes (mental accidents). From these changes in sensory experiences, functioning, and perception, he proposed that the mind could then present alternate personalities that were secondary to the first - much like dreams might replay themes from throughout the day. He documented how, in several cases, some “subpersonalities” shared memories and experiences, while others did not. He was also the first to explore which personalities got to “drive” the body (fronting), and why. He was also the first to propose that the severity of fragmentation depended upon the depth of traumatization, an idea which prevails still today.
In 1906, Mortin Prince published the Christine Beauchamp case in “The Dissociation of a Personality“. Beauchamp allegedly had three personality states including one calling herself Sally who was childlike. Sally differed greatly from a very regressed alter called Idiot. Prince wrote about the case in paper of “The Journal of Abnormal Psychology” which “was the most quoted reference in the history of the illness“. After this documentation, however no further mention of multiple personalities was mentioned n the journal until Prince’s published famous account of Christine Costner Sizemore. In 1957, the case was made into a film starring Joanne Woodward playing the title role in The Three Faces of Eve.
It wasn’t until Ferenczi’s “Confusion of Tongues” paper in 1932 that dissociation and subsequent splitting of the personality were explicitly linked to childhood abuse. However, at the time, any theory involving the subconscious mind was unpopular, and few paid attention to what Ferenczi had discovered - and what Jeanne Fery herself had written in 1584.
There is an unusual gap in the literature, then, following Stengel’s famous statement in 1943 that the condition was “extinct”. This statement is often used to explain the gap in literature, and the poor presentation of the article and misapplication of the conclusion confused many who then misunderstood the article to mean that the condition is no longer studied or believed to happen as previously documented for over four hundred years. This is entirely false, and not the point of his article. It is true that the article was published during the transition between French-speaking psychiatry and German-speaking psychiatry and the development of English-speaking psychiatry as its own field. But also, when Stengel wrote about dissociation, he was referring to the external version (fugues) and the internal version (multiple personality). CLICK HERE for the reference to the original article (Stengel, E. (1943). Further studies on pathological wandering (fugue with the impulse to wander). Journal of Mental Health Science, 89, 224–241.)
But then, in the 1970’s, H. Ellenberger published a paper entitled “The Discovery of the Unconscious: The History and Evolution of Dynamic Psychiatry” that focused on multiple personality disorder. Many clinicians continued to collaborate and work toward establishing official diagnostic criteria for the disorder. Margareta Bowers along with six other contributors published “Therapy of Multiple Personality” in 1971, which included outlines and rules for treatment.
Further, the 1970’s also offered the first workshops and trainings for how to treat multiple personalities. Pioneers in the field, such as Dr. Wilbur (of Sybil fame), Ralph B. Allison, and David Caul, M.D. developed programs and treatment workshops to teach other clinicians how to recognize, diagnose, and treat the condition - which naturally led to an increase in the number of cases diagnosed and reported, once treatment for it became available.
In 1980, this work culminated in the publication of the DSM-III by the American Psychiatric Association, which for the first time created a separate category with the term “dissociative” being first introduced as its own class of disorders. It also officially set forth the criteria for a diagnosis of Multiple Personality Disorder.
When the DSM-III-R was released, the essential feature of dissociative disorders was officially "a disturbance in the normally integrative functions of identity, memory, or consciousness . . ."
Landmark publications quickly followed, including E. L. Bliss' study of fourteen patients, P. M. Coons systematic treatment of making a diagnosis, G. B. Greaves "classic" review article, B, G. Braun's treatment recommendations and S. S. Marmer’s psychoanalytic study. Frank W. Putnam, of the National Institute of Mental Health, published the classic “Diagnosis and Treatment of Multiple Personality Disorder”, which was quickly followed by the research of Colin Ross in “Multiple Personality Disorder: Diagnosis, Clinical Features, and Treatment.”
In 1994, the DSM-IV was released, changing the name of Multiple Personality Disorder officially to Dissociative Identity Disorder (DID). The criteria for dissociative identity disorder was now:
The presence of two or more distinct identities or personality states (each with its own relatively enduring pattern of perceiving, relating to, and thinking about the environment and self).
At least two of these identities or personality states recurrently take control of the person's behavior.
Inability to recall important personal information that is too extensive to be explained by ordinary forgetfulness.
The disturbance is not due to the direct physiological effects of a substance (e.g., blackouts or chaotic behavior during Alcohol Intoxication) or a general medical condition (e.g., complex partial seizures). Note: In children, the symptoms are not attributable to imaginary playmates or other fantasy play.
The DSM-5 changed this definition in 2013 to allow self-reports and specify that amnesia may occur with regards to everyday events and not just traumatic ones.
1994 (the same year the Polyvagal Theory was introduced) also saw the International Society for the Study of Dissociation (ISSTD) released their 100-page document “Guidelines for Treating Dissociative Identity Disorder in Adults”. Screening instruments, structured interviews and assessments, and specialized mental status examinations quickly followed.
While not the most authoritative, Wikipedia explains the history of the ISSTD most succinctly:
The focus of the organization has broadened over the years. In the 1980s, the ISSMP&D, the International Society for the Study of Multiple Personality and Dissociation, grouped clinicians and researchers primarily interested in Multiple Personality Disorder (MPD). Dissociative Identity Disorder (DID) had been called MPD since the 19th century, and was still called MPD in DSM-II and DSM-III. In the 1990s, DSM-IV changed the name of MPD to DID, and so the ISSMP&D simplified its name to the ISSD - the International Society for the Study of Dissociation, broadening its interest to include the other dissociative disorders. By the 21st century, the ISSD had broadened its interest to include chronic developmental traumatic disorders (also known as Complex PTSD), and so the name was lengthened to ISSTD: the International Society for the Study of Trauma and Dissociation. Editors of the book Dissociation and the dissociative disorders: DSM-V and beyond describe the ISSTD as "The principle professional organization devoted to dissociation".
As the “principle professional organization devoted to dissociation”, the ISSTD revised their treatment guidelines for adults with dissociative disorders in 2011. These guidelines are available online HERE. This was the third revision, and it was published in the Journal of Trauma & Dissociation , 12:115–187. It includes 15 pages of references (pages 172-187), leaving the guidelines themselves at 56 pages long (115-171, with the conclusion on 172).
The most recent theory of dissociation came from the Netherlands, and has come to be called the Structural Dissociation Theory ("The Haunted Self: Structural Dissociation and the Treatment of Chronic Traumatization" by Onno van der Hart, Ellert Nijenhuis, and Kathy Steele is what first brought the theory into the limelight and was only published in 2006). This will be discussed later in our conference more in depth, but essentially proposes that all children are born with an identity or personality that is structured with separate states and that it is through attunement and caregiving and being raised in a healthy and safe environment by positive caregivers with good attachment that these states are integrated into one person in “normal” development. However, with abuse and neglect or other severe misattunement experiences, these states do not get to integrate into one “personality”, and instead they remain dissociated (or separated) from each other. This is a shift from the dissociation theory of the 80’s and 90’s that viewed the separate personality states, or alters, as having “split off” from a core personality and needing to be integrated back into that core. While some dissociative systems may still have one who views themselves or is viewed by others as a kind of core, or some systems may have a primary personality who identifies with the body and age and even “host” - fronting the most often - with structural dissociation, even these would also be considered alters rather than some unbroken piece from which the others were derived.
Besides being the first developmental model of how dissociative identify disorder occurs, it also clarified several issues. One is that serious and significant trauma prior to the age of six is more likely to develop into a trauma response like dissociative identity disorder, while serious and significant trauma after age nine is more likely to develop into a personality disorder. These may overlap in presentation, and the structural dissociation model explains this by labeling different internal parts as ANP (“apparently normal parts”) or as EP (“emotional part”). There may or may not be amnesia between these parts, and the degree of amnesia correlates to the specific diagnosis along the dissociative spectrum.
Another explanation that came out of this model was the idea of how different dissociative systems are organized based on the type of trauma response. For example, an adult who dissociates in response to one traumatic event in adulthood may separate themselves from the memory or emotional response to that event; on the other hand, an adult who had a series of traumatic events may have multiple separations of memories or emotional responses to those events; and then an adult who grew up with ongoing abuse and repeated traumatic events while also being unable to integrate ego states during childhood development may have several presenting adults as well as the multiple emotional states.
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.
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