(I am republishing ‘legacy content’ from our PLOS Neuroanthropology weblog, which has been taken down, along with many of the other founding PLOS Blogs. Some of these, I am putting up because I teach with them. If you have any requests, don’t hesitate to email me at: greg.downey @ mq (dot) edu (dot) au. I suspect many of the links in this piece will be broken, but I will endeavour to try to slowly rebuild this content. I originally published this on 5 January 2011. Part 2 is here: Delusions, odd and common: Living in the prodrome, part 2 (originally 10 January 2011).)
How might it feel to sense your own sanity eroding? Would you realize it? How might you sift the phantoms from physical reality, daydream from delusion, the irrefutable from the implausible? Or, as author Rachel Aviv puts it,
When does a strong idea take on a pathological flavor? How does a metaphysical crisis morph into a medical one? At what point does our interpretation of the world become so fixed that it no longer matters “what almost everyone else believes” [part of the definition of ‘delusion’ in the DSM]? Even William James admitted that he struggled to distinguish a schizophrenic break from a mystical experience. (Aviv 2010: 37)
Aviv wrote in the December issue of Harper’s Magazine: Which way madness lies: Can psychosis be prevented? (UPDATED: The original is now locked, but you can download a pdf of the story here. Thanks, Deidre!) As Aviv told me in an email, the story arose, in part, out of following young patients at clinics who might be in the prodrome to psychosis, the early stages of experiencing intermittent breaks from shared reality that might lead up to schizophrenia. Based on interviews with patients and clinicians, Aviv explores how both seek to cope with the warning signs that someone may be sliding toward a definitive break, or ‘conversion’ as it is termed in psychiatry, bolstering the individual’s sense of self and reality against corrosion.
The piece is a powerful, troubling, and thought-provoking read. Aviv explains:
It is impossible to predict the precise moment when a person has embarked on a path toward madness, since there is no quantifiable point at which healthy thoughts become insane. It is only in retrospect that the prelude to psychosis can be diagnosed with certainty. (36)
What I particularly appreciate about Aviv’s account is that she writes extensively about the nature of the delusions themselves, about the flow of delusional ideas, their relation to the collapse of a clear sense of self, and the challenges facing an individual who begins to feel the implausible welling up in everyday reality. She writes that much of psychiatry has tried to get around the specificities of the delusions — Who’s putting thoughts in your head? How are you being watched? What sort of ghosts or angels or aliens are following you?
Patients and some clinicians alike have a vested interest in discrediting the content of delusions, dismissing the ideas as errant chemicals or glitches in brain function. But as Aviv so clearly demonstrates, the specificities of the delusions are both what the patients struggle with daily and the source of the leverage that some of them find to fight off further drift into idiosyncratic worlds. The delusions matter, both because patients search in them for signs of their truth or unreality, but also because the details of the delusion, not just the fact of having them, arise from our shared reality.
As Aaron (not his real name) told Aviv: ‘What happens if there’s some truth to your delusion? What if it is tied to reality?… They don’t want you to come up with mythical explanations. So they keep telling you over and over again that it’s just your brain’ (44). This will be part one of a two-part post, the first of which will explore Aviv’s writing and the controversy around prodrome; the second post will follow by tomorrow and talk about the anthropological study of schizophrenia and my own thoughts on the how the content of delusion might affect the experience of psychosis.
Rachel Aviv’s work on prodrome
Rachel Aviv has won a number of awards for writing about mental health, but in 2010 she secured a Writers’ Award from the Rona Jaffe Foundation. Aviv used the support to follow young people who had been identified as in danger of schizophrenia at a Maine psychiatric clinic and at a specialized clinic in upper Manhattan. As she explained on the Rona Jaffe Foundation webpage, ‘I am drawn to [the Maine] clinic because it offers a rare glimpse into a community of adolescents self-consciously struggling to maintain their grasp on reality.’
Aviv, out of the blue, sent me her wonderful article in Harper’s Magazine: Which way madness lies: Can psychosis be prevented? (appeared in the December 2010 issue). Consider it my belated Christmas present to all of you to recommend that you should go read Rachel’s powerful piece, available through Harper’s online archive. The only reason I haven’t posted something on it sooner is that I wanted to do Ms. Aviv’s piece justice, and it’s taken me longer to do it than I like.
According to Aviv, sixty clinics around the US work on early psychosis, about a third of which focus exclusively on people in the prodrome of psychosis. The prodrome is:
the aura that precedes a psychotic break by up to two or three years. During this phase, people often have mild hallucinations—they might spot a nonexistent cat out of the corner of their eye or hear their name in the sound of the wind—yet they doubt that these sensations are real. They still have “insight”—a pivotal word in psychiatric literature, indicating that a patient can recognize an altered worldview as a sign of illness, not a revelation. (36)
In other words, mild (or not so mild) hallucinations alone are not the specific problem with psychosis, but the failure of what we might call the ability to recover the normal, the ‘insight’ to realize that something was a hallucination. Other symptoms seem to precede the onset of serious psychosis — conversion — and demonstrate a process of degeneration.
More recent studies have shown that in the years before people have a psychotic break, they struggle to identify tastes and smells—a banana no longer tastes like a banana, or fresh water begins to carry the odor of mold—and they lose gray-matter volume in certain parts of their brains, particularly the hippocampus, which is crucial for learning and memory. (38)
In another study, researchers found that subjects with a tendency toward psychosis could discern words in recordings of multiple voices intentionally overlaid so as to make it impossible under normal conditions to understand what was being said. Normal subjects could not perceive anything.
Part of the loss of reality then was an over-projection of meaning and exaggerated concentration on some aspect of reality that most of us, by consensus, choose to ignore (I’ll come back to this because of course, the consensus is not everywhere the same).
Rachel tells Anna’s story
One thing Aviv brings to the piece in Harper’s is a non-judgmental gentleness and generosity to people who are clearly experiencing the fragility of their own grasp of reality. Aviv tells the story of ‘Anna’ (not her real name), a young woman who had grown up with a schizophrenic mother and lived in fear of following her mother into madness.
Although Anna struggles to communicate her profoundly alien sensations — she described in her personal journal, written while first experiencing troubling thoughts, feeling ‘migrating electrical sensations’ and the sense that ‘words were alive’ (Aviv 2010: 37) — together, Anna and Rachel produce a moving description of the edge of our shared reality. I emphasize this because I don’t want to underestimate the skill of either Aviv or the people she interviewed in piecing together compelling accounts of unusual realities. As an anthropologist, I very much appreciate the skill of the translator, making another world comprehensible and yet preserving its distinctiveness.
I’m going to take the liberty of piecing together from a number of places in the article a version of the story of Anna because I think it captures with profound sensitivity the fragility of her reality. Aviv’s (2010) telling of the story is excellent, and I don’t think I can do it justice in paraphrase.
I met Anna last year at her Illinois home, a small, brightly painted town-house apartment, and she tried to pinpoint when she had stopped believing in the reality she’d contentedly inhabited all her life. A petite twenty-eight-year-old with cleanly parted blond hair, she spoke in a thin, strained voice and avoided looking at me. My lips, she said, appeared as if they were moving at a different pace than my voice, and she had to bat away the thought that she was watching a dubbed film.
Anna’s mother is schizophrenic, and Anna had always found her mother’s world-view—derived in part from messages she deciphered in processed-food packaging—distasteful and impossible to comprehend. She assumed that when her mother had a schizophrenic break, the delusions had taken her by force, engulfing her. But an alternate reality did not come to Anna fully formed….
One day, wandering the halls of an academic department, she became fascinated by the physical details of the building: tiny cracks in the wall, a light switch, a rubber doorstop that looked luminous and functionless. A bust of Plato, which she had never noticed before, seemed to be calling out to her. As she gazed at Plato’s mournful expression, she imagined that he had singled her out to unburden himself and shed light on the “overwhelming strangeness of the world.” …
She blamed herself for attending too avidly to the stream of her own consciousness. “It wasn’t as if this bust suddenly started talking to me out of thin air,” she told me. “I wanted him to, and then I sort of convinced myself that he did. It didn’t feel like I was passively being subjected to another reality. It felt like I somehow actively engaged in creating it.”…
[In] the course of a few months, she had become too suggestible: she would come up with sweeping theories about the structure of reality— that time no longer existed, that the world was made entirely of gasses— and then, moments later, scold herself for allowing the experience when there was “not a shred of scientific evidence.” She kept waiting for the particles to vanish on their own. When they didn’t, she worried she was “addicted to an idea.” She felt that by wondering about the properties of matter—by blowing on books to see whether they would disintegrate—she had taken some irrevocable step toward illness….
For Anna, there was no single moment of “conversion,” no sudden break from one state of mind to the next. If there is a boundary between health and insanity, Anna felt herself creeping across it with pained self-awareness. She remembered as a teenager feeling dismayed by her mother’s inability to communicate: her thoughts no longer conformed to the “laws that literally allow us to make sense.” Now Anna worried that she, too, had somehow been unmoored from the rhythms of everyday life. …
The last time I spoke with Anna, in June, more than two years after she first became a patient at the clinic, she said her delusions had become less compelling. Ordinary activities, like lounging on a bed and trusting that it wouldn’t sink through the floorboards, no longer felt alien and unnatural. She said that her psychologist and psychiatrist strongly believed the change came from her taking a new antipsychotic drug, asenapine, for the past two months, but she couldn’t convince herself of this explanation and was thinking of stopping the medication. It wasn’t as if her perceptions had become normal again, she argued. Hard surfaces still felt airy and insubstantial, but now she made conscious decisions every day to rely on them just as she had before. It was a matter of ignoring swaths of her own perceptual experience, of relearning how to construct the world in her mind….
The illness was about not just the active symptoms but also a more fundamental shift that made them plausible. “The symptom that bothers me the most is the one I can’t even begin to describe,” she said, leaning back on her white couch, the sun pouring into her living room.
After months spent struggling to articulate what she was going through, she felt her memories of the experience slipping away. “I can resort to bizarre metaphors, but I can’t even in the grossest, roughest way communicate that state of mind.” She paused, looking away. “The substance of my experience is thrown into doubt. I am left with this incredibly deep sense that none of these things ever happened to me.”
One dimension of Aviv’s account that I find most interesting, but that gets lost in my encapsulation of the nine page piece, is that Anna actively tried to make sense of a world that seemed perceptually so unstable. The delusional theories she comes to do not hatch from nothing, but from a mind actively trying to figure out why solid objects suddenly seem less than fully tangible, why people appear distant and small, why time temporarily shifts and becomes disarticulated into unconnected moments. Her odd worldviews and theories about reality do not create the delusions but rather arise from an attempt to impose sense on the increasingly nonsensical.
Whether this powerful interpretive process is part of Aviv’s artistry in telling the story, something distinctive about Anna, an unusually intelligent and intellectually gifted individual, or a general property of prodromal experience, I cannot tell. But I think it’s part of what unsettles Anna so much: that her own mad theories seem plausible to her, that she can’t discount what she knows, on some level, is an absurd proposition that she herself is making.
Practical problems of diagnosing the prodrome
The attempt to get prodrome of schizophrenia itself recognized as a psychiatric condition arises from a belief that, if the precursor symptoms could be diagnosed more widely, individuals might be helped to avoid entirely or postpone the onset of schizophrenia, either through prescription anti-psychotics or through cognitive therapy. When patients possess higher levels of insight (awareness of their condition, possibility to label one’s condition, ability to stay on treatment regimen), prognosis for patients improves.
The problem is that even the best clinics have a hard time discerning which patients who demonstrate warning signs are likely to undergo conversion to fully psychotic symptoms. The most sophisticated and optimistic studies place the success rate at about 40-50%, with the outcome muddied by a suspicion that intervention might have either helped or that early detection is generating false positives.
Longitudinal studies have shown that individuals who go on to schizophrenia often have a host of developmental delays, speech problems, clumsiness, higher rates of playing alone, social anxiety, and other anomalies. But the symptoms have low specificity, with too many showing up in individuals who end up developing normally to offer prediction of future psychosis (Corcoran et al. 2003).
Moreover, since early detection is so difficult, generating sufficient subjects to do statistically significant research results requires either a lot of time or widespread cooperation among clinics and researchers (Addington et al. 2007). In the case of the North American Prodrome Longitudinal Study discussed by Addington and colleagues (2007: 666), several independently conceived projects had to come together and retrospectively integrate their diagnostic procedures.
The North American Prodrome Longitudinal Study (NAPLS) is a consortium of eight independent longitudinal research programs on the trajectory of prodrome all funded by the National Institute of Mental Health: ‘The consortium combined previously collected prospective, longitudinal data from these eight sites into a common federated database including 291 prodromal individuals, 35% of whom converted to psychosis within 2½ years’ (from the NAPLS website; see also Addington et al. 2007).
The ethical problems of recognizing prodrome
So designating a preliminary syndrome is diagnostically tricky, but it’s also fraught with attendant ethical problems. In a letter to the board of the American Psychiatric Association last year, Allen Frances, chair of the DSM-IV Task Force, and Robert Spitzer, who directed production of the influential DSM-III, wrote to the American Psychiatric Association to caution especially about the inclusion of preliminary syndromes in the forthcoming DSM-V:
The suggested subthreshold and premorbid diagnoses. If these were to become official categories in DSM-V, they could add tens of millions of newly diagnosed “patients”- the majority of whom would likely be false positives subjected to the needless side effects and expense of treatment. The APA might well be accused of a conflict of interest in fashioning DSM-V to create new patients for psychiatrists and new customers for the pharmaceutical companies. Certainly, the DSM-V Task Force does not have these motives but, in its effort to increase diagnostic sensitivity, it has been insensitive to the great risks of false positives, of medicalizing normality, and of trivializing the whole concept of psychiatric diagnosis.
This letter is part of the larger debate raging about the DSM-V (see Vaughan at Mind Hacks recent piece on the broader debate at The war of the manual of mental illness which also has links to earlier pieces).
Corcoran and colleagues (2003) also warn of the false positive issue, especially in relation to likely attempts to use anti-psychotics on premorbid patients:
Identifying a population that has a 40–50% conversion to psychosis within 1 to 2 years is impressive, though it still means that 50–60% of individuals identified as at risk for a stigmatizing condition may never develop psychosis, and therefore be exposed unnecessarily to powerful medications which have unknown long-term effects on the developing brain.
Aviv similarly highlights the fact that being diagnosed as in danger of schizophrenia may have effects on the patients that are more subtle, even if medication is not involved:
Many psychiatrists worry that young patients will become fatalistic about their future and define themselves in relation to a chronic disease they may never develop. Yet once people have a full-blown psychotic episodes—the schizophrenia diagnosis requires a month of psychotic behavior—there may be irreversible changes in the brain. Studies have shown that the longer someone is unhinged from reality before getting treatment for the first time, the worse their long-term prognosis. (2010: 36)
Determining who might be at risk
In order to determine who should be admitted, Aviv reports that most clinics use a battery of tests, including background checks to see about any family history of schizophrenia, measures of cognitive degeneration, patterns of social problems, and a set of questions designed to illuminate what she calls the ‘the earliest flickers of psychosis’ (see also Addington et al. 2007):
- Do you daydream a lot or find yourself preoccupied with stories, fantasies, or ideas?
- Do you think others ever say that your interests are unusual or that you are eccentric?
- Do familiar people or surroundings ever seem strange? Confusing? Unreal? Not a part of the living world? Alien? Inhuman?
- Have you ever felt that you might not actually exist? Do you ever think that the world might not exist? (39)
The test also checks for a subject’s ability to engage in abstract thought because, perhaps ironically, the early stages of psychosis involve diminished ability to see abstract patterns. As Aviv explains, patients are asked to,
describe the similarities between an apple and a banana. The correct response— “Both are fruit”—eludes some of the sicker patients, who instead home in on concrete characteristics. The psychologist who administers the exam told me that one of the most common wrong answers is “Both have skin.”
Although they do not enumerate them quite in the way I do, Corcoran and colleagues (2003; adapted from Møller and Husby 2000) suggest that parents and family members of those later diagnosed as schizophrenic observed six recurring elements in the lead-up to conversion:
- significant decreased attendance and performance in school or work;
- a major and persistent change in interests that was evident to others;
- significant social withdrawal, isolation and passivity;
- clear and lasting change in appearance and behavior;
- disturbance in self-perception; and
- preoccupation with overvalued ideas.
The difficulty, of course, is that at least the first five of these are pretty typical — albeit in greatly attenuated form — in many young people as they transition through adolescence. My comment is not to diminish the severity of either schizophrenia or prodromal disruption but to highlight why such a severe condition can frequently go undiagnosed and untreated for long periods of time, even years, as family members try to figure out just how troubled their child might be.
Aviv discusses how Cheryl Corcoran, also director of the Center of Prevention & Evaluation (COPE), the prodromal outpatient clinic of the New York State Psychiatric Institute in New York City, must try to judge how convinced patients are of their delusions: how clearly do you hear the voices, or do you think that your feelings of having your mind read could be your imagination? Aviv describes how patients in the early stages seek to dismiss their troubling thoughts, discounting them as ‘goofy’ or ‘absurd’ (40). Corcoran explains: ‘When people are not entirely convinced, you can work with that insight…. The experience doesn’t have to impose a change on their identity’ (Aviv 40).
Making sense in a mad world
From the point of view of the patient, however, the change can look quite different; capturing their perspectives is where Aviv’s sensitivity as an interviewer is particularly laudable in her piece in Harper’s. Although the literature on pre-schizophrenic patients and their parents’ descriptions may portray them as withdrawing from reality, in their own accounts, the increasingly delusional young people are often plumbing quite deep questions, questions that are not theirs alone.
The only commonalities were that nearly all of [the prodromal interviewees] had moved through childhood and adolescence feeling more thoughtful, intelligent, or probing than their family and peers and that there had been an existential tinge to their preoccupations years before their symptoms emerged. Aaron, a patient at Aware who had been the president of his high school class, said that he and the others in his therapy group had “all gotten caught up on the deep, fundamental questions—religion, morality, ethics—and sucked in by them.” (Aviv 40).
Leaving aside the brain pathology and focusing on the experience, the prodromal individual spends an inordinate amount of time on existential questions — what is the nature of reality, who am I, what if all of this is an illusion — that many of us also cannot answer, but simply foreclose speculating upon. That is, some of the questions are legitimate existential inquiries, but they seem to come to dominate prodromal individuals and take on a particularly phantasmagoric nature.
In addition, as the prodromal patient Anna suggests, she has a hard time throwing out speculations about these questions that most of us will discount on the basis of our own experiences. Not surprisingly, as anyone who has hung out with individuals taking psychoactive substances knows, when reality is similarly intruding into by odd and inexplicable sensations, many normal individuals also resort to the same sorts of wild speculations and ad hoc theories about existence.
I am no psychotherapist, and Daniel is probably far more qualified than me to discuss this case, but I’m struck by a few questions about how the content of delusion that Aviv powerfully describes and the context in which they occur interact. Besides, bloggers rush in where even fools (let alone angels) fear to tread… But for that you’ll have to come back for Part 2….
Photo: ‘Schizophrenia’ by VisualAge 2007 (produced without multiple exposure). Used under Creative Commons license, original available through Flickr.
Photo of Rachel Aviv from the Rona Jaffe Foundation’s webpage describing the winners of the 2010 Writers’ Awards.
‘To the APA Board of Trustees’ a letter by Allen Frances MD and Robert Spitzer MD (6 July 2009)
The war of the manual of mental illness (Mind Hacks)
Addington, J., Cadenhead, K., Cannon, T., Cornblatt, B., McGlashan, T., Perkins, D., Seidman, L., Tsuang, M., Walker, E., Woods, S., Heinssen, R., & , . (2007). North American Prodrome Longitudinal Study: A Collaborative Multisite Approach to Prodromal Schizophrenia Research Schizophrenia Bulletin, 33 (3), 665-672 DOI: 10.1093/schbul/sbl075
Aviv, Rachel. (2010) Which way madness lies: Can psychosis be prevented? Harper’s Magazine (December): 35-46. (or access through Rachel’s website)
Corcoran, C., Davidson, L., Sills-Shahar, R., Nickou, C., Malaspina, D., Miller, T., & McGlashan, T. (2003). A Qualitative Research Study of the Evolution of Symptoms in Individuals Identified as Prodromal to Psychosis Psychiatric Quarterly, 74 (4), 313-332 DOI: 10.1023/A:1026083309607
Møller, P., and R. Husby (2000). The initial prodrome in schizophrenia: searching for naturalistic core dimensions of experience and behavior. Schizophrenia Bulletin 26(1): 217-232. PMID: 10755683
Selected comments (edited to remove nonsense links, original available at the Wayback Machine).