None of these diagnoses takes into account the unusual talents that many of our patients develop or the creative energies they have mustered to survive. All too often diagnoses are mere tallies of symptoms, leaving patients such as Marilyn, Kathy, and Mary likely to be viewed as out-of-control women who need to be straightened out.
The dictionary defines diagnosis as “a. The act or process of identifying or determining the nature and cause of a disease or injury through evaluation of patient history, examination, and review of laboratory data. b. The opinion derived from such an evaluation.”2 In this chapter, and the next, I will discuss the chasm between official diagnoses and what our patients actually suffer from and discuss how my colleagues and I have tried to change the way patients with chronic trauma histories are diagnosed.
HOW DO YOU TAKE A TRAUMA HISTORY?
In 1985 I started to collaborate with psychiatrist Judith Herman, whose first book, Father-Daughter Incest, had recently been published. We were both working at Cambridge Hospital (one of Harvard’s teaching hospitals) and, sharing an interest in how trauma had affected the lives of our patients, we began to meet regularly and compare notes. We were struck by how many of our patients who were diagnosed with borderline personality disorder (BPD) told us horror stories about their childhoods. BPD is marked by clinging but highly unstable relationships, extreme mood swings, and self-destructive behavior, including self-mutilation and repeated suicide attempts. In order to uncover whether there was, in fact, a relationship between childhood trauma and BPD, we designed a formal scientific study and sent off a grant proposal to the National Institutes of Health. It was rejected.
Undeterred, Judy and I decided to finance the study ourselves, and we found an ally in Chris Perry, the director of research at Cambridge Hospital, who was funded by the National Institutes of Mental Health to study BPD and other near neighbor diagnoses, so called personality disorders, in patients recruited from the Cambridge Hospital. He had collected volumes of valuable data on these subjects but had never inquired about childhood abuse and neglect. Even though he did not hide his skepticism about our proposal, he was very generous to us and arranged for us to interview fifty-five patients from the hospital’s outpatient department, and he agreed to compare our findings with records in the large database he had already collected.
The first question Judy and I faced was: How do you take a trauma history? You can’t ask a patient point blank: “Were you molested as a kid?” or “Did your father beat you up?” How many would trust a complete stranger with such delicate information? Keeping in mind that people universally feel ashamed about the traumas they have experienced, we designed an interview instrument, the Traumatic Antecedents Questionnaire (TAQ).3 The interview started with a series of simple questions: “Where do you live, and who do you live with?”; “Who pays the bills and who does the cooking and cleaning?” It progressed gradually to more revealing questions: “Who do you rely on in your daily life?” As in: When you’re sick, who does the shopping or takes you to the doctor? “Who do you talk to when you are upset?” In other words, who provides you with emotional and practical support? Some patients gave us surprising answers: “my dog” or “my therapist”—or “nobody.”
We then asked similar questions about their childhood: Who lived in the household? How often did you move? Who was your primary caretaker? Many of the patients reported frequent relocations that required them to change schools in the middle of the year. Several had primary caregivers who had gone to jail, been placed in a mental hospital, or joined the military. Others had moved from foster home to foster home or had lived with a string of different relatives.
The next section of the questionnaire addressed childhood relationships: “Who in your family was affectionate to you?” “Who treated you as a special person?” This was followed by a critical question—one that, to my knowledge, had never before been asked in a scientific study: “Was there anybody who you felt safe with growing up?” One out of four patients we interviewed could not recall anyone they had felt safe with as a child. We checked “nobody” on our work sheets and did not comment, but we were stunned. Imagine being a child and not having a source of safety, making your way into the world unprotected and unseen.
The questions continued: “Who made the rules at home and enforced the discipline?” “How were kids kept in line—by talking, scolding, spanking, hitting, locking you up?” “How did your parents solve their disagreements?” By then the floodgates had usually opened, and many patients were volunteering detailed information about their childhoods. One woman had witnessed her little sister being raped; another told us she’d had her first sexual experience at age eight—with her grandfather. Men and women reported lying awake at night listening to furniture crashing and parents screaming; a young man had come down to the kitchen and found his mother lying in a pool of blood. Others talked about not being picked up at elementary school or coming home to find an empty house and spending the night alone. One woman who made her living as a cook had learned to prepare meals for her family after her mother was jailed on a drug conviction. Another had been nine when she grabbed and steadied the car’s steering wheel because her drunken mother was swerving down a four-lane highway during rush hour.
Our patients did not have the option to run away or escape; they had nobody to turn to and no place to hide. Yet they somehow had to manage their terror and despair. They probably went to school the next morning and tried to pretend that everything was fine. Judy and I realized that the BPD group’s problems—dissociation, desperate clinging to whomever might be enlisted to help—had probably started off as ways of dealing with overwhelming emotions and inescapable brutality.
After our interviews Judy and I met to code our patients’ answers—that is, to translate them into numbers for computer analysis, and Chris Perry then collated them with the extensive information on these patients he had stored on Harvard’s mainframe computer. One Saturday morning in April he left us a message asking us to come to his office. There we found a huge stack of printouts, on top of which Chris had placed a Gary Larson cartoon of a group of scientists studying dolphins and being puzzled by “those strange ‘aw blah es span yol’ sounds.” The data had convinced him that unless you understand the language of trauma and abuse, you cannot really understand BPD.
As we later reported in the American Journal of Psychiatry, 81 percent of the patients diagnosed with BPD at Cambridge Hospital reported severe histories of child abuse and/or neglect; in the vast majority the abuse began before age seven.4 This finding was particularly important because it suggested that the impact of abuse depends, at least in part, on the age at which it begins. Later research by Martin Teicher at McLean Hospital showed that different forms of abuse have different impacts on various brain areas at different stages of development.5 Although numerous studies have since replicated our findings,6 I still regularly get scientific papers to review that say things like “It has been hypothesized that borderline patients may have histories of childhood trauma.” When does a hypothesis become a scientifically established fact?
Our study clearly supported the conclusions of John Bowlby.
When children feel pervasively angry or guilty or are chronically frightened about being abandoned, they have come by such feelings honestly; that is because of experience. When, for example, children fear abandonment, it is not in counterreaction to their intrinsic homicidal urges; rather, it is more likely because they have been abandoned physically or psychologically, or have been repeatedly threatened with abandonment. When children are pervasively filled with rage, it is due to rejection or harsh treatment. When children experience intense inner conflict regarding their angry feelings, this is likely because expressing them may be forbidden or even dangerous.
Bowlby noticed that when children must disown powerful experiences they have had, this creates serious problems, including “chronic distrust of other people, inhibition of curiosity, distrust of th
eir own senses, and the tendency to find everything unreal.”7 As we will see, this has important implications for treatment.
Our study expanded our thinking beyond the impact of particular horrendous events, the focus of the PTSD diagnosis, to look at the long-term effects of brutalization and neglect in caregiving relationships. It also raised another critical question: What therapies are effective for people with a history of abuse, particularly those who feel chronically suicidal and deliberately hurt themselves?
SELF-HARM
During my training I was called from my bed at around 3:00 a.m. three nights in a row to stitch up a woman who had slashed her neck with whatever sharp object she could lay her hands on. She told me, somewhat triumphantly, that cutting herself made her feel much better. Ever since then I’d asked myself why. Why do some people deal with being upset by playing three sets of tennis or drinking a stiff martini, while others carve their arms with razor blades? Our study showed that having a history of childhood sexual and physical abuse was a strong predictor of repeated suicide attempts and self-cutting.8 I wondered if their suicidal ruminations had started when they were very young and whether they had found comfort in plotting their escape by hoping to die or doing damage to themselves. Does inflicting harm on oneself begin as a desperate attempt to gain some sense of control?
Chris Perry’s database had follow-up information on all the patients who were treated in the hospital’s outpatient clinics, including reports on suicidality and self-destructive behavior. After three years of therapy approximately two-thirds of the patients had markedly improved. Now the question was, which members of the group had benefited from therapy and which had continued to feel suicidal and self-destructive? Comparing the patients’ ongoing behavior with our TAQ interviews provided some answers. The patients who remained self-destructive had told us that they did not remember feeling safe with anybody as a child; they had reported being abandoned, shuttled from place to place, and generally left to their own devices.
I concluded that, if you carry a memory of having felt safe with somebody long ago, the traces of that earlier affection can be reactivated in attuned relationships when you are an adult, whether these occur in daily life or in good therapy. However, if you lack a deep memory of feeling loved and safe, the receptors in the brain that respond to human kindness may simply fail to develop.9 If that is the case, how can people learn to calm themselves down and feel grounded in their bodies? Again, this has important implications for therapy, and I’ll return to this question throughout part 5, on treatment.
THE POWER OF DIAGNOSIS
Our study also confirmed that there was a traumatized population quite distinct from the combat soldiers and accident victims for whom the PTSD diagnosis had been created. People like Marilyn and Kathy, as well as the patients Judy and I had studied, and the kids in the outpatient clinic at MMHC that I described in chapter 7, do not necessarily remember their traumas (one of the criteria for the PTSD diagnosis) or at least are not preoccupied with specific memories of their abuse, but they continue to behave as if they were still in danger. They go from one extreme to the other; they have trouble staying on task, and they continually lash out against themselves and others. To some degree their problems do overlap with those of combat soldiers, but they are also very different in that their childhood trauma has prevented them from developing some of the mental capacities that adult soldiers possessed before their traumas occurred.
After we realized this, a group of us10 went to see Robert Spitzer, who, after having guided the development of the DSM-III, was in the process of revising the manual. He listened carefully to what we told him. He told us it was likely that clinicians who spend their days treating a particular patient population are likely to develop considerable expertise in understanding what ails them. He suggested that we do a study, a so-called field trial, to compare the problems of different groups of traumatized individuals.11 Spitzer put me in charge of the project. First we developed a rating scale that incorporated all the different trauma symptoms that had been reported in the scientific literature, then we interviewed 525 adult patients at five sites around the country to see if particular populations suffered from different constellations of problems. Our populations fell into three groups: those with histories of childhood physical or sexual abuse by caregivers; recent victims of domestic violence; and people who had recently been through a natural disaster.
There were clear differences among these groups, particularly those on the extreme ends of the spectrum: victims of child abuse and adults who had survived natural disasters. The adults who had been abused as children often had trouble concentrating, complained of always being on edge, and were filled with self-loathing. They had enormous trouble negotiating intimate relationships, often veering from indiscriminate, high-risk, and unsatisfying sexual involvements to total sexual shutdown. They also had large gaps in their memories, often engaged in self-destructive behaviors, and had a host of medical problems. These symptoms were relatively rare in the survivors of natural disasters.
Each major diagnosis in the DSM had a workgroup responsible for suggesting revisions for the new edition. I presented the results of the field trial to our DSM-IV PTSD work group, and we voted nineteen to two to create a new trauma diagnosis for victims of interpersonal trauma: “Disorders of Extreme Stress, Not Otherwise Specified” (DESNOS), or “Complex PTSD” for short.12,13 We then eagerly anticipated the publication of the DSM-IV in May 1994. But much to our surprise the diagnosis that our work group had overwhelmingly approved did not appear in the final product. None of us had been consulted.
This was a tragic exclusion. It meant that large numbers of patients could not be accurately diagnosed and that clinicians and researchers would be unable to scientifically develop appropriate treatments for them. You cannot develop a treatment for a condition that does not exist. Not having a diagnosis now confronts therapists with a serious dilemma: How do we treat people who are coping with the fall-out of abuse, betrayal and abandonment when we are forced to diagnose them with depression, panic disorder, bipolar illness, or borderline personality, which do not really address what they are coping with?
The consequences of caretaker abuse and neglect are vastly more common and complex than the impact of hurricanes or motor vehicle accidents. Yet the decision makers who determined the shape of our diagnostic system decided not to recognize this evidence. To this day, after twenty years and four subsequent revisions, the DSM and the entire system based on it fail victims of child abuse and neglect—just as they ignored the plight of veterans before PTSD was introduced back in 1980.
THE HIDDEN EPIDEMIC
How do you turn a newborn baby with all its promise and infinite capacities into a thirty-year-old homeless drunk? As with so many great discoveries, internist Vincent Felitti came across the answer to this question accidentally.
In 1985 Felitti was chief of Kaiser Permanente’s Department of Preventive Medicine in San Diego, which at the time was the largest medical screening program in the world. He was also running an obesity clinic that used a technique called “supplemented absolute fasting” to bring about dramatic weight loss without surgery. One day a twenty-eight-year-old nurse’s aide showed up in his office. Felitti accepted her claim that obesity was her principal problem and enrolled her in the program. Over the next fifty-one weeks her weight dropped from 408 pounds to 132 pounds.
However, when Felitti next saw her a few months later, she had regained more weight than he thought was biologically possible in such a short time. What had happened? It turned out that her newly svelte body had attracted a male coworker, who started to flirt with her and then suggested sex. She went home and began to eat. She stuffed herself during the day and ate while sleepwalking at night. When Felitti probed this extreme reaction, she revealed a lengthy incest history with her grandfather.
This was only the second case of incest Felitti had encountered in his twenty-three
-year medical practice, and yet about ten days later he heard a similar story. As he and his team started to inquire more closely, they were shocked to discover that most of their morbidly obese patients had been sexually abused as children. They also uncovered a host of other family problems.
In 1990 Felitti went to Atlanta to present data from the team’s first 286 patient interviews at a meeting of the North American Association for the Study of Obesity. He was stunned by the harsh response of some experts: Why did he believe such patients? Didn’t he realize they would fabricate any explanation for their failed lives? However, an epidemiologist from the Centers for Disease Control and Prevention (CDC) encouraged Felitti to start a much larger study, drawing on a general population, and invited him to meet with a small group of researchers at the CDC. The result was the monumental investigation of Adverse Childhood Experiences (now know at the ACE study), a collaboration between the CDC and Kaiser Permanente, with Robert Anda, MD, and Vincent Felitti, MD, as co–principal investigators.
More than fifty thousand Kaiser patients came through the Department of Preventive Medicine annually for a comprehensive evaluation, filling out an extensive medical questionnaire in the process. Felitti and Anda spent more than a year developing ten new questions14 covering carefully defined categories of adverse childhood experiences, including physical and sexual abuse, physical and emotional neglect, and family dysfunction, such as having had parents who were divorced, mentally ill, addicted, or in prison. They then asked 25,000 consecutive patients if they would be willing to provide information about childhood events; 17,421 said yes. Their responses were then compared with the detailed medical records that Kaiser kept on all patients.
The ACE study revealed that traumatic life experiences during childhood and adolescence are far more common than expected. The study respondents were mostly white, middle class, middle aged, well educated, and financially secure enough to have good medical insurance, and yet only one-third of the respondents reported no adverse childhood experiences.
The Body Keeps the Score Page 18