Why PTSD Is Under-Recognized, Part I: The Upside Down
How much confidence should we have in professionals to recognize PTSD?
Posted Feb 14, 2018
For patients with posttraumatic stress disorder (PTSD), the diagnosis is missed approximately 90% of the time by clinicians. Researchers in South Africa, conducted a study with adults on a psychiatry inpatient unit (Van Zyl et al., 2008). Before the study, the rate of diagnosis of PTSD on the unit was 6%. This represented the recognition of PTSD when mental health clinicians used their usual methods of practice. The researchers then selected 40 patients at random from the unit to interview. Using the gold standard diagnostic interview for adults, the Clinician Administered PTSD Scale, they found that the rate of diagnosis of PTSD was actually 40%. Doctors had been missing the diagnosis of PTSD 85% of the time.
That study was not a fluke. A repetition of this type of study was conducted in the United States at two mental health programs for children and adolescents in Pennsylvania (Miele and O’Brien, 2010). Before the study, the rates of diagnosis of PTSD at the two programs were 2% at one site and 5% at the second site (out of 44 and 56 patients respectively). The researchers then did their own evaluations on all of those patients with a standardized diagnostic interview for PTSD, and found that the rates of diagnosis of PTSD were actually 48% and 45% at the two sites. Licensed mental health clinicians were missing the diagnosis of PTSD 91% of the time!
The Upside Down
In “Stranger Things,” Netflix’s hit series, a boy disappears into an eerie copy of his own world that his friends call “the upside down.” In the upside-down, everything is in the same place as in the "normal" world. The boy can walk in familiar buildings, and even have brief contact with his friends and family on the other side, but the upside down is dark, buildings are overgrown with alien-looking vines, and the atmosphere is different. In addition, the boy is alone, except for an alien monster that seems to be trying to eat him.
The upside down sounds more than a little like suffering from PTSD. The physical structure of the world is the same, but the reality of the individual suffering from PTSD is quite different compared to the realities for everyone else. They live in a foreign world that we can’t really visit or totally understand. As a participant in one of my treatment studies once said to her therapist, “My life changed. I’ll never be the same. I mean I used to be happy and a positive person, and now I’m never happy. And I can’t really tell anybody.”
Similar to how the boy’s friends can’t get into the upside down to search for the boy, many experts who are supposed to be helping clients with PTSD can’t correctly diagnose the clients. I believe that PTSD may be the most difficult problem to recognize in all of psychiatry.
Seven Reasons Why PTSD is Under-Recognized
1. Etiological event is required. PTSD is one of the rare disorders in the DSM-5 that requires an event to happen before the symptoms can appear. Before symptoms of PTSD can be ticked off as present or not, you must know if the symptom started before or after the event in question. Many of these inquiries require multi-step connections for both the interviewer and respondent: Identify the symptom, connect it back in time to a past event, and recognize that the current manifestations are related to the past experiences.
2. Avoidance. Avoidance of reminders of traumatic events make up two of the symptoms of PTSD. Many clinicians believe, mistakenly, that asking about traumas will make the patients excessively distressed and cause tension in their relationships with patients. I believe however that the real reasons clinicians avoid talking about trauma is either that it makes the clinicians feel uncomfortable, not the patients, or the clinicians don’t even consider the diagnosis.
3. Many symptoms are internalized, existing primarily as thoughts or feelings. That is, they are not flagrantly manifest by behaviors to the outside world. These symptoms include avoidance of reminders, self-blame, feeling detached from people, dissociative experiences, and intrusive recollections. You can’t tell someone has PTSD by looking at them and it requires thorough interviewing to spot these symptoms.
4. Developmental differences. Many symptoms of PTSD look different in children compared to teenagers and adults because of their developmental differences. For example, the assessment of difficulty concentrating requires different questions depending on whether the client is preschool-age, adolescent, or adult.
5. Memory complicates things. Memory is a critical part of PTSD in a way that is unique from any other disorder. Memory of a traumatic event is required for the disorder, and memory to connect present symptoms to past experiences is needed in order to discuss any symptoms in an evaluation. Memory, however, can be balky and malleable. Clinicians have to be extra-patient to allow clients time to retrieve their memories. Sometimes I teach my trainees to sit quietly and count to six in their heads each time that they must wait for respondents to retrieve memories.
6. Time-consuming. There are 20 possible symptoms in the PTSD DSM-5 criteria. This is more than double the number found in nearly all other disorders. It ought to be evident from the first five reasons that extra time is needed to conduct a good assessment for all of these symptoms of PTSD.
7. Frame of reference. When interviewing loved ones of patients, particularly parents of children and adolescents, they may not fully understand the syndrome of PTSD. If loved ones or parents have never had PTSD themselves, they have no frame of reference of what the symptoms look like and they will have a difficult time understanding the questions. Contrast this to other types of psychiatric syndromes, such as depression or ADHD. Nearly everyone recognizes the sadness of depression and the hyperactivity of ADHD, but you can’t tell someone has PTSD by looking at them. The frame of reference problem is a problem for clinicians too if they have never received proper training about PTSD.
When interviews are conducted properly, clinicians first educate the respondents as to what the symptoms are before it can make sense for the clinicians to ask if the symptoms exist. This process, which I call “educational interviewing,” takes extra effort and time. This will be the topic of Part II.
(Excerpted from Dr. Scheeringa’s book They’ll Never Be the Same, to be released April 2018 by Central Recovery Press, and currently available for pre-order.)
Miele, D. & O'Brien, E.J. (2010). Underdiagnosis of posttraumatic stress disorder in at risk youth. Journal of Traumatic Stress, 23, 591-598.
Van Zyl, M., Oosthuien, P.P., & Seedat, S. (2008). Posttraumatic stress disorder: Undiagnosed cases in a tertiary inpatient setting. African Journal of Psychiatry, 11, 119-122.