I Don't Think We Are

The Assessment of DID and DDNOS

By Lana Epstein

Photo by cottonbro studio

Despite a proliferation of material devoted to the dissociative disorders during the past 4 decades, clients on the upper end of the continuum of these orders can still remain unrecognized for years.  These dissociative clients often present with a symptom and treatment picture so complicated as to cloud the underlying dissociative organization.  Many clinicians have still not been trained to assess for dissociative disorders, which are frequently obscured by a diagnosis, such as Depression, that might correctly identify one part of the diagnostic whole.    According to Richard Kluft, a majority of dissociative clients go through periods during which dissociative activity is low and periods during which the dissociative activity is florid enough to provide “windows of diagnosability” (Kluft 1985).  To further  complicate matters, clients suffering from a dissociative disorder often go to great lengths to conceal manifestations of the disorder.  This paper, which synthesizes a number of works from the 1980’s and 1990’s  (Coons 1984) Kluft (1985) (1987), Loewenstein (1991), Putnam (1989), Ross (1995), Steinberg (1994)) will discuss some of the diagnostic clues that should alert the treating clinician to assess for a dissociative disorder.

            Certain details occur repeatedly in the presentation of someone suffering from a dissociative disorder.  These clients  are polysmptomatic and are likely to have had a number of diagnoses through the years.   Although Depression is the most common diagnosis, other diagnoses include Bipolar Disorder, Borderline Personality Disorder, Schizophrenia, all manner of anxiety disorders, Obsessive-Compulsive Disorder, Somatoform Disorders. According to  Frank Putnam (Putnam, 1989), an average of seven years have elapsed since a DID patient’s first psychiatric assessment and the diagnosis of DID and the DID patient has had an average of 3.6 diagnoses before being correctly diagnosed (Kluft, 1985).   A good rule of thumb, therefore, would be to assess for a Dissociative Disorder whenever a patient has received a number of diagnoses, a variety of medications and/or has seen a mber of treaters who have conscientiously delivered sound treatment that has resulted in little or no progress  (Kluft 1985).

            Since it is widely thought and supported by research (Putnam, F. W. and E.  B. Carlson, 1998) that increased dissociation results from a history of chronic and severe sexual and physical trauma and/or neglect, it is prudent to assess for dissociative features with clients who report such histories.   Colin Ross asserts that most dissociative clients are aware of the abuse in their history.  According to Ross, 80-90% of his clients knew they had been abused, although they might not have remembered all of the details of the abuse (Ross, 1995).   

Dissociation is the brain’s way of compartmentalizing information that is too much for the person to bear.  Consequently, many clients report little or no memory for childhood events.   Although a paucity of childhood memories is not, in itself, evidence of a traumatic childhood, amnesia is at the core of  Dissociative Disorders described in the DSM-5-TR.   Clients, therefore, should routinely be asked whether they are amnestic for events in their lives and whether they ever lose periods of time.    Ask also whether the client ever forgets important information such as his/her name, age, or date of birth.  Asking that question twice during a session frequently yields the surprising result that the dissociative client will respond negatively the first time and positively the second.

The client may report amnesia for certain periods of their childhood, or may report current periods in which they have blacked out.   These clients are frequently walking into the middle of the story and having to piece together what’s gone before--what they’ve said, what they’ve done.  A colleague tells the story of a client who awoke to realize a strange man was in her bed.    Frightened, she asked him what he was doing there, and he replied that she had picked him up in a neighborhood bar.  The client, who did not drink, was confused by this news and asked the whereabouts of this bar.  The following evening, in search of the truth, she visited the bar and was greeted by the bartender.  She asked whether the bartender recognized her and he replied, “Of course I recognize you.   You’ve come here every Friday evening for months.  Every Friday you sit at the bar and drink ginger ales.”  

You may notice that the client seems to forget from session to session the work that has been done in therapy.  Although we can and should ask about amnesia, we cannot count on self-reports because these clients forget that they have forgotten or take for granted the lack of temporal continuity in their lives and often make no such report.  Moreover, the client may be ashamed that she experiences memory gaps, and that shame may cause her to confabulate.   Often for dissociative clients, the best clues we have about the past are embedded in the reenactments which occur in the present.

You may assess for amnesia as part of your routine mental status examination.    Often the best way to elicit information about amnesia is to do so indirectly, by making inquiries about events that might suggest amnesia (Kluft, 1985).  Unless we know a client well, it’s best to avoid alarming the client by limiting  these questions to 2 or 3 per session.  You might ask, for example, “Do you remember a time in school when all of your classmates seemed to have learned something about which you had no knowledge, even though you must have been present when the material was taught?”  Such a question is more specific but less directly threatening to some clients than the question “Do you ever experience gaps in memory?”  You might ask “Do you ever have the experience that people seem to know you even though you’re certain you don’t know them?” or “Do people sometimes call you by another name?”  Somewhat more threatening are questions such as “Do you ever find clothes in your closet that you don’t remember buying?” or “Do you ever find articles in your possession you don’t remember obtaining or food in your refrigerator that you don’t remember buying and don’t enjoy eating?”

Both the Loewenstein article (Loewenstein, 1991) and the Dissociative Experiences Scale or DES (Carlson and Putnam, 1986), provide a fuller treatment of the questions to ask when screening for a dissociative disorder. This link will take you to the most updated version of the DES https://traumadissociation.com/des.   The DES is a simple  instrument to use and to score.   It lists 28 such questions, and takes about 15 minutes to administer.  A client who scores 30 or above on the DES is considered strongly dissociative (Ross, 1995).    Many clinicians begin their formal assessment by using the DES for a general picture and then administer either the SCID-D (Steinberg, 1994) or the DDIS (Ross, 1995) for a more detailed picture of the areas most affected by dissociative processes.

In the words of Bessel van der Kolk “the body keeps the score”  (van der Kolk 1994) and the dissociative population presents with all manner of physical and somatic complaints (Nijenhuis 2004)..     Headaches are the most common physical complaint (Coons, 1988).  For  clients at the high end of the dissociative spectrum, often these headaches accompany switching (of ego states) or an internal struggle in the self-system.  These headaches are unusually sudden, brief and very severe.   Gastrointestinal  complaints are common as are reproductive difficulties.  Conversion symptoms, also common, can include blindness, deafness and paralysis.  Sometimes one part of the client’s dissociative system might experience a physiological or psychiatric symptom that other parts do not. We hear, for example, of clients for whom one alter evidences hypertension or psychosis, while the other alter personalities are free of these conditions.

Tolerance for pain is another area that might suggest a dissociative disorder.  DID cleints are facile at going into auto-hypnotic states that enable them to self-anesthetize for bodily pain.  One of my clients told the story of the labor and delivery of her last child--a complicated delivery in which the obstetrical staff had to act quickly and were unable to administer anesthesia.  The staff was amazed at the patient’s composure during the procedure.  The client, for her part, told me laughingly “I never felt a thing.  I simply flew up to the overhead light and stayed there until the baby was born!”  There are clearly times when a dissociative capacity is a real plus--and this was one such time.  Unfortunately, this client was unable to control times when she would spontaneously dissociate and burn her arms or hurt herself in other ways while self-anesthetized for pain.

Because alters sometimes see or hear each other, the client may present that she hears voices.  These voices are the reason that many dissociative clients hide their disorder.  Because they know that auditory hallucinations are associated with schizophrenia, dissociative clients are often afraid they are psychotic.  Your client, therefore, may not tell you about the voices and you might elicit more information by asking the client whether she ever notices herself talking out loud.  If the answer is positive, ask whether she ever answers herself.  Whenever a client describes hearing voices, it is important to ascertain whether those voices seem to come from inside or from outside of the self.   According to Richard Kluft, dissociative patients describe hearing voices originating from inside the self greater than 80% of the time (Kluft, 1985).   If the voices are heard inside, the patient is likely dissociative and NOT schizophrenic.  (This concept has more recently been refuted as unreliable, but still may elicit useful information much of the time.)

In one paper, Kluft asserts that voices are not the only Schneiderian first-rank symptom presented by DID clients.  In his estimation, DID patients present with more Schneiderian first-rank symptoms than do Schizophrenic patients.  These symptoms include “made feelings, made impulses, made volitional acts, voices arguing in the head, influences playing on the body, thoughts ascribed to others, though withdrawal and voices commenting on their actions, in diminishing order of frequency”.  Of the 11 Schneiderian first-rank symptoms, only 3 were not encountered: i.e., delusional perceptions, audible thoughts and thought broadcasting (Kluft, 1987).

There might be a telltale physical presentation for DID  clients who are actively and floridly dissociative.  You might notice the appearance of different self-states or changes in voice or body appearance.  You may notice subtle or not-so-subtle changes in the way your client holds themselves or appears.  One of my clients appeared to actually change size from session to session.  Some days she would appear to be tall and statuesque; other days, she appeared petite.  Your client might arrive dressed uncharacteristically or might even introduce herself as another person during times of florid dissociative activity.  Changes in style are common, as are differences in hats, eyeglasses, and various other accessories.  Many dissociative clients carry complicated handbags in order to keep themselves better organized.  For the most part, however, clients present in a more covert and subtle manner (Franklin, 1988).  You often cannot discern a dissociative disorder without actively looking and you cannot always trust your clinical “feel” for the clientt the way you might be able to do with a client suffering from paranoia or depression.  As I indicated earlier, your clinical sense might detect--and correctly so--one part of the symptom constellation; i.e. the depression or obsessive-compulsive disorder--while missing the underlying dissociative organization entirely.

Some physical manifestations of DID are more observable than others.  “Switching behaviors”, for example, are often detectable.  The majority of DID clients look away or in some way cover parts of their face while they are switching from one state to another.  This movement can be subtle, sometimes even accomplished by simply sporting a hairstyle that partially covers the face, but if you are alert to the possibility of DID, you can often spot the switch.  You can sometimes notice the eyelids fluttering or even see a full eye-roll accompanying the switch.  You might see a tensing of facial muscles, a facial twitch or observe another part of the body twitching.  The experience of switching takes about 5 seconds (Loewenstein, 1991).

Access to case records might reveal other indications of a dissociative disorder, such as the use of different names or changes in handwriting.   One such record reviewed at a major teaching hospital revealed that a patient, diagnosed with Major Depression, had used a number of different  names  during the 41 years she was known to the hospital.    Close examination further revealed that her signature was markedly different on various forms she had signed for the hospital over the years.  Sometimes her signature was different within the same year.  Such extensive records are fortuitous and unusual, however, clinicians can suggest that their clients keep a journal that might be shared with the clinician.  Such a journal would alert the therapist to handwriting changes.

It is widely accepted that the psychogenesis of dissociative disorders is a history of chronic and severe childhood trauma and/or neglect. (Chu, 1999 Franklin, 1988, Herman, 1992, Putnam, 1986, van der Kolk).    The dissociative client, therefore, is subject to any and all of the symptomatology ascribed to Post-Traumatic Stress Disorder (PTSD).  Substance abuse is frequently part of the symptom picture for dissociative clients, who have often learned to use substances to self-medicate.  Colin Ross has stated that fully 65% of DID clients abuse or have abused substances  (Ross, 1997).  Common also are periods of affect flooding and constriction, irritability, hypervigilance, startle reactions, and night terrors.  Many dissociative clients sleepwalk and find evidence in the morning that they have done so.

Lastly, these clients sometimes refer to themselves as “we”.  One of the most memorable assessment interviews of my professional life was with a dynamic managerial woman in her 40’s whose chief complaint was her inability to leave a difficult relationship.  She spoke warmly and at length of her idyllic childhood and about her love for her artistic and caring parents.  She described the warmth of living close to her extended family and reminisced about the musical productions that were part of her family life.  Her adult life, however, was marked by sharp contrast and included three marriages--all to men who had been physically and sexually abusive.  I did not believe this woman to be dissociative, but because the contrast between childhood and adulthood was so puzzling, I began to ask some of the questions aimed at assessing dissociative tendencies.   To my surprise, the client responded to each question as though she were suffering from Dissociative Identity Disorder.  Once I got my bearings, I said finally, “You must be wondering why I’m asking you all of these strange questions”.  The client replied, “No.  I’m assuming that you’re checking for Multiple Personality Disorder” as it was then called.  When I asked what she knew of Multiple Personality Disorder she informed me that she was an avid reader who had always been interested in MPD and so had read a great deal about it.  “So”, I asked, “What do you think?”.  To our mutual astonishment, the client replied “I don’t think we are”, and our work was cut out for us.

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