The need to re-name “schizophrenia”
Brian Koehler PhD, MS
New York University and Columbia University

Schizophrenia translates in Chinese as “Mind-Split Disease” which is heavily stigmatizing in their culture. It is visualized as a split and broken brain with connotations of severity and irreversibility and is associated with dangerousness.

Many people in the field are calling for a dimensional approach to “schizophrenia” and “psychotic” disorders. Many researchers recognize the transdiagnostic nature of the symptoms as well as the multiplicity of etiological factors (including genetic heterogeneity and epigenetic processes triggered by adverse environments), courses and outcomes. The continuum construct includes “psychotic” symptoms in the undiagnosed population as well.

The re-naming of “schizophrenia” in China involved a working group of health professionals from several regional hospitals in Hong Kong. Fifty recommendations were generated and considered over a span of six months at various clinical settings. I do not think people with lived experience and family members were included in this process, which I believe is a significant limitation. The term eventually adopted in 2001 to replace “schizophrenia” (Jing Shen Fen Lie Zheng) is Si Jue Shi Tiao which translates to “thought and perceptual dysregulation.” The emphasis is on the “positive” symptoms like hallucinations and delusions as well as reversibility of any neurotransmitter imbalance.” Personally, I would not assume that the neuromodulator putative “imbalance” is primary in all, or even most, persons given this diagnosis. We simply do not know at this point in our knowledge. For symptoms can work through the brain, but not necesseraily because of the brain (or genes).

The Japanese neuropsyhiatrists along with family members and perhaps persons with lived experience selected “loss of coordination”-or “integration disorder.” These countries, along with South Korea which replaced “schizophrenia” with “attunement disorder,” sought to reduce public stigma and shame as well as make it easier for access to early intervention which can have a significant impact on reducing “chronicity.”

Si Jue Shi Tiao has been reasonably well adopted in Chinese speaking and East Asian communities. Public and staff education must be part of the re-naming process of “schizophrenia.” The public and healthcare professionals should be updated periodically on emerging empirical data particularly on such subjects as: genome wide association studies (GWAS) that interrogate the genome, which yield lower genetic effects (even with the polygenic risk score resulting in a “heritability gap”) than represented in family studies which have confounding variables; transdiagnostic and non-specific neurobiological findings which are often found in the neuroscience research on chronic stress, adverse childhood experiences, social isolation, etc.; social factors involved in the initiation, course and outcome of “schizophrenia” (e.g., urban birth/living, migration from a non-white to a white neighborhood, expressed emotion, etc.); psychopharmacological research, including the new data on long-term therapeutic and adverse side effects (e.g., survival rates, antipsychotic-induced atrophy of gray and white matter); to recovery and world outcome data (e.g., the WHO findings documenting better recoveries in “developing” nations than “developed” countrries). In my personal experience, I have observed that mental health professionals and educators do not always keep up with more recent data, due to their busy schedules and perhaps lack of access to a multiplicity of journals and conferences, and therefore can potentially impart incorrect and outdated information to people with lived experience, family members, other healthcare staff, and the general public.

See Perspectives in Early Intervention
Naming psychosis: the Hong Kong experience
Cindy P.-Y. Chiu, May M. Lam, Sherry K.-W. Chan, Dicky W.-S. Chung et al. (2010). Early Intervention in Psychiatry, 4: 270-274.