Diagnosis with dignity
Reprinted from "Stigma & Discrimination" issue of Visions Journal, 2005, 2 (6), p. 9-11
Anyone who’s ever been diagnosed with a mental illness, knows someone who has, or has done the diagnosing themselves knows that the Diagnostic and Statistical Manual of Mental Disorders (known as the DSM, or the DSM-IV-TR to reﬂect the latest edition) can play an important part in shaping a person’s illness identity. Since 1952, the DSM has been the psychiatrist’s bible for assessment guidance. It is a powerful tool that can both encourage (through labelling) and discourage (through normalizing) prejudice and dis-crimination.
To learn more about the complexities of the DSM, I interviewed Dr. Joe Solanto, a psychotherapist and educator in private practice, based in Victoria. Dr. Solanto teaches clinician groups how to understand and responsibly use the DSM system at the Justice Institute of BC. His course offerings include two levels of a workshop called Everything You Ever Wanted to Know about the DSM-IV-TR. This, and a similar course for child and youth assessments, are geared for professional gatekeepers, such as school personnel and various mental health practitioner groups. Members of these groups may not have clinical backgrounds in the DSM, but often have to make provisional diagnoses. During the last 13 years, Solanto has delivered these courses on the DSM to more than 500 participants throughout BC.
“The course content tries to present the DSM system in a balanced way that not only increases understanding, but also increases the likelihood that it won’t be misused,” says Solanto. After two intensive days of groundwork, participants review case studies and use the DSM system to come up with a multi-axis diagnosis.
While mental health consumers are not the target audience for the course, Solanto says that in nearly every session, someone invariably volunteers that they are participating out of personal interest because of a mental health diagnosis. “They’ll often express their feelings of what that’s done for or against them. Sometimes the learning for the group is that the person was disadvantaged by the system. And sometimes people acknowledge that it was helpful to them; that when they ﬁnally arrived at a diagnosis, it helped put them on a path of healing that they may have not been on otherwise.”
Solanto approaches the curriculum in a very sensitive, people-centred way and encourages participants to appreciate the potential helpfulness as well as the limitations of the diagnostic system.
"We have to accept that any system that tries to categorize or classify is going to be limited by a whole number of factors,” says Solanto. “One of those factors is that people just don’t appear in black and-white form the way that diagnoses appear; people are much more complex. And assessment doesn’t have the accuracy and speciﬁcity of x-rays or lab study, so there’s lots of room for subjective judgements and error. Inherent in the DSM sys- tem is forcing the clinician to make choices. A diagnostic category might emphasize some symptoms and under recognize others. So, in the effort to decide on a term, you’re often missing as much as you’re addressing. Even an accurate diagnosis is like a snapshot of someone: true for that moment, but not the full picture of his or her life.”
The person using the DSM tool is just as important in the equation, says Solanto. “It’s been my experience that there are some excellent clinicians out there who have the necessary clinical and interpersonal skills, a thorough understanding of diagnoses and the full range of treatment options, as well as awareness of community resources; the DSM in their hands is really a guide to help them direct their diagnostic thinking. In the end, it’s their clinical judgement that’s most important. But I’ve also encountered diagnosticians who may not have the same ability to establish rapport, to have the sensitivity or the cultural awareness, or to acknowledge the social, political or legal contexts of the client’s life. When you consider people outside of the contexts of their real lives, it’s questionable how useful that information is going to be for them.”
“The process, from start to ﬁnish, is loaded with potential pitfalls and it’s only with tremendous sensitivity, awareness and caution that one can do the least amount of harm,” he says. This advice is particularly important with the more controversial or problematic categories— problematic in diagnosis, treatment and, often, community prejudices.
“There’ve always been a few diagnoses that have had pejorative effects: in recent times, borderline personality disorder is probably number one on that list. In many cases, it still can be a kind of fatal diagnosis,” notes Solanto. “In my experience, the underlying probability of early childhood trauma has not been fully appreciated. When understood in that light, it leads to a more sensitive understanding of behaviours and, therefore, the person."
Naming and renaming has been a historical feature of the DSM system. The term personality disorders is just one of a number of recently appearing psychiatric names—and it has not always served people well. In Solanto’s view, simply changing the term for a previously-stigmatizing condition does not mean that the old prejudice does not attach itself to the new term. When Solanto worked in the New York school system, and mental retardation was the term of the day, the kids were called “retards” by their classmates. When the term was reframed to developmental disabilities, the problem didn’t disappear; peers just called the affected kids “DDs.” The tone of ridicule was the same.
Children in particular have had to face the recent parade of newer diagnoses, such as conduct disorder, oppositional deﬁant disorder, and attention-deﬁcit hyperactivity disorder (ADHD).
“We have to ask ourselves: are these diagnoses real clinical entities or are they a by-product of many different factors: social, political, familial, cultural, legal? ADHD is one of those that has more behind it than the individual child’s neurological development,” says Solanto. ADHD is culturally localized, since European and other nations do not recognize ADHD as a prevalent clinical condition. ADHD is one of many disorders in the DSM that has been heavily linked to a Western-based pharmaceutical inﬂuence and so has been culturally redeﬁned through marketing.
“That’s another pitfall of the diagnostic system: that so much of it is linked to the biomedical model,” says Solanto. “Clearly, I have seen people’s lives saved and transformed with the help of psychotropic medication. But I think the strong inﬂuence of the biomedical/pharmaceutical model has conditioned mental health clinicians to be thinking down that track from the outset. That has to colour how you think about the person, and whether you consider all the other possible causes, or treatment options.”
“Certainly, some people have found freedom in announcing their mental health diagnosis, that they’re on medication, that it’s changed their life. Rather than stigmatizing them, it has empowered them and, paradoxically, has allowed them to feel less abnormal. However, it’s more common that psychiatric medications are associated with ‘craziness’ and disability. The medications come with the potential beneﬁts, but also with that cloud over them.”
As attitudes—toward medication, other treatments, or mental illness in general—are culturally deﬁned and reinforced, Solanto’s course curriculum includes attention to Appendix I of the DSM, which encourages clinicians to conduct a cultural assessment during diagnosis. They are encouraged to ask questions such as: Are there any cultural factors that might better explain the person’s behaviour, or that should be taken into account in treatment planning? What is the potential impact of cultural differences between the diagnostician and the client?
“We have to remember that it is a very culturally bound system and the DSM itself emphasizes repeatedly—more heavily in later editions—that it represents a North American cultural world view. In this part of the world, when clinicians are working within very diverse communities, if we are to use a culturally bound system like the DSM, we have to think of how to address the cultural relevancies of it in some way that keeps a caution alive throughout.”
Cultural assessments are one way clinicians are encouraged to think of their own assumptions and acknowledge their own prejudices and world views and how that informs and complicates the diagnostic process.
“It all starts with self examination,” says Solanto. “Mental health clinicians, all along the spectrum, can beneﬁt from a regular check on their attitudes and beliefs, because even if you didn’t come into the work with negative ones, these may develop over time. You can become particularly cynical and distant as a self-protective measure. I think it takes constant vigilance, a lot of peer-sharing, ongoing professional training, and good supervision. All sorts of folks are drawn to this work, and if you’re already inclined to not be very engaged or compassionate, you’ll ﬁnd lots of ways in this ﬁeld to express all of that.”
Despite all these cautions, Solanto’s encounters with practitioners around BC have been heartening. He says, “Mostly though, I ﬁnd the dominant attitude of the folks who take my course is that they come very humbly to the task of doing an assessment. I’ve been quite impressed with the level of sensitivity, caution and compassion that they convey in talking about their clients. Even when we do the more clinical case studies, the discussion most often goes toward the human side of the story and what would really be helpful for this client.”
And, clients are gaining power in therapeutic situations. This adds a beneﬁcial balance to the DSM therapeutic equation and to the potential stigmatizing effects of a diagnosis. “It is great these days,” says Solanto, “that the ordinary person is getting more knowledgeable—talking to others, reading the books, coming to the meetings, and getting on websites—and, as a result, asking more questions. The empowerment that comes with that is half of the healing.”
About the Authors
Sarah is one of the Guest Editors for this issue of Visions
Dr. Solanto is a therapist, consultant, and clinical supervisor and educator in private practice. For more than 30 years he has trained educators and mental health professionals in therapeutic responses to critical incidents and psychological trauma. In addition to training clinicians in diagnostic assessment and treatment-planning processes for the Justice Institute of BC, Joe teaches courses in workplace wellness, restorative justice approaches, and adventure based counselling. Before moving to BC, he spent 18 years as a school psychologist and seven as the director of a mental health outpatient treatment centre in New York. He currently lives in Victoria, BC
American Psychiatric Association. (2000). Diagnostic and statistical manual of mental disorders (4th ed., text revision). Washington, DC: Author.
A multi-axis diagnosis looks at various factors affecting symptoms. In the DSM there are ﬁve major axes: 1) clinical disorders, 2) personality disorders and developmental disability, 3) general medical conditions, 4) psychosocial and environmental problems, and 5) global assessment of functioning.
Spiegel, A. (2005, January 3). The dictionary of disorder. The New Yorker, 56-63.