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For Providers: Misdiagnosis and the Biomedical Model

How do we help those we don't understand and how will we understand them if we don't take more time to get to know them? Presentation of symptoms hasn't been an effective way of diagnosing mental illness since Kreapelin and Blueler yet, at least in our hospital and community settings, it's still a dominant aspect of our approach. Assessments, diagnostic tools and collateral information, when available, and a brief interview, are typically used in an ancillary fashion, however, they are often inadequate in identifying causal relationships between presentation and experience. In the 3 years I worked on a treatment team as a peer specialist, I frequently found the time to develop a strong rapport with clients and learned from their disclosures how their behavior made some sense in a trauma-based context.

Let me present just a few examples which led to changes in the diagnosis and treatment plan:

Two men admitted to this facility refuse to engage. They isolate. The only recognition they give that others are even there are threatening glares or furtive glances. (more details about antisocial presentation). They're affects are flat, unemotional, but their behaviors give no indication of internal preoccupation. They're simply cold, they even seem a little mean.

At the hospital where I worked at the time, they were both diagnosed with antisocial personality disorder.

Was there any difference between their presentations? Not really. But as the Peer Specialist who had both on my caseload, I had the opportunity to patiently and slowly enter their space. Sitting beside them, joining them at the window, or sitting by their bedside. Eventually we developed a distant comfortability. I began talking to them in brief intervals.

One man expressed over time, through single-word responses, that he didn't hate anybody, he didn't love his family, he didn't care if others were hurt, he had no interest in others for their own sake.

The other, gradually began to talk in a guarded fashion. Over weeks he came to share bit and pieces. He'd spent time in prison, he'd been in a foster home, he'd never gotten a leg up from an authority figure in his whole life. But he wasn't angry... he was scared. His best strategy was to make no moves, give no opportunity to be misinterpreted and hopefully, this new incarceration would end.

So was one antisocial? I think so.

What about the other? A reasonable man with a strategy based on past experiences. A deep lack of trust that prevented him from explaining himself.

A trauma survivor. A misdiagnosis.

A woman is at times aggressive, bullying other clients and rude to the staff. At other times she is silent, staying in the corners or near the walls, and occasionally she bangs her head violently against a wall.

The team identified her as schizoaffective, paranoid type.

But the luxury of my role allowed me to spend long periods of time in her space, and one day she started crying and couldn't stop. What poured forth was self-loathing and shame and all the fear and meanness that accompany it. She'd been hurt in ways that now defined her. When we'd taken some real time to process what had happened, and she was able to reconstruct a healthy narrative describing her development and behavior in an empowering manner, she was able to take with her a plan of action for addressing what had been an incomprehensible morass of suffering.

A trauma survivor. A misdiagnosis.

Finally a man who fidgets. Who has trouble listening during interactions with the team. Who speaks tangentially at times and who constantly looks over his shoulder. He regularly asks if sounds, objects, topics of conversation are about him and wants to know why they're happening?

Diagnosis: Schizophrenia paranoid type.

But we didn't know until much later that he'd been a drug dealer in Mexico, that a deal had gone bad, that his friend had been shot in front of him and that he'd received two gunshot wounds while running for his life. And that he hadn't really stopped running in the 3 years since. He crossed the border illegally, and furtively made his way to Brooklyn.

PTSD with concomitant self-referential thinking.

He was a trauma survivor. A misdiagnosis.

I don't know how long the assessment process is where you work. For billing and legal reasons and because of time constraints, I'm sure a diagnosis is established within 72 hours. Our psychiatrists spent a total of 1 hour in the assessment process before determining a diagnosis. How many hours is it where you are?

Data shows that of the population of people who spend time in a psychiatric inpatient facility, trauma history is consistently above 90%, and I'll cite Mueser et al in 1998 and 2004 to support that.

Data also shows that less that 2% of the same population receive a diagnosis of significant trauma.

So how many clients here are walking around with inaccurate diagnoses? Personally, I received roughly 15 diagnoses from a score of doctors over a 3 year period.

Misdiagnosis is likely rampant. Here, and most everywhere else.

In a positive shift, we do have a general and recent commitment to Trauma-Informed Care (TIC), but Trauma-informed care is intended to act as a safeguard against exacerbating existing trauma, and when done at it's very best, it can prevent iatrogenic re-traumatization, which is a very laudable goal.

However, trauma-informed care is not intended to treat trauma. Best practices regarding trauma, based largely on the work of Judith Herman, says that delving into trauma is like opening a pandora's box. That we don't have enough time to nurture someone through the reliving and grieving process and shouldn't flirt with the buried roots of suffering, and I've noticed that so many professionals follow that logic. But then, what change are we really seeking to create during their time with us?

Others like Levine and Bloom advocate that we can process trauma through visceral experiences and corrective experiences without having to unearth too much pain. But this process is labor-intensive for clinicians, pressing into our high levels of paperwork and large caseloads. They require deep personal investment and a unifying systemic structure that allows all staff, and even clients, to contribute to the process.

A lot of people I've spoken to agree that there's a better approach in contextual diagnosis, relationship-based service delivery and treatments based in corrective experiences. However, they fall short in delivering that model for lack of resources like time, emotional capital, energy and the team support that would stretch those resources farther.

But taking on a course of action that we all believe in, have seen work, and know we could deliver doesn't have to begin at the end, with deep systemic change. It begins much more simply: with a commitment to the notion that our clients can recover in a meaningful sense and that our belief in, and commitment to them and to our own professional growth away from the dubious certainties of hard science and towards the shared human experiences that we know have mattered most in our own lives.

It was thanks to people who shared their patience, respect, love and learned wisdom using techniques learned along the way, that made the difference in my life. And I've payed that debt forward scores of times. Many professionals may agree on the ideological or theoretical level, but it's in translating that conviction into practice that real change and real progress become possible.

Let's discuss this, I can help your organization take the first steps in moving towards a person-centered and trauma-oriented approach.

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