This mental illness “recovery movement” is not without controversy, however, particularly when it comes to those with the most severe illnesses. Although the vast majority of people with schizophrenia are not a danger to anyone other than themselves, there are some who are at risk for violence without medication. In these cases, self-management without consistent medication could be dangerous.
But because currently used drugs can have such devastating side effects, including weight gain and Type 2 diabetes, and because they don’t help people learn how to live with their disease, both psychiatrists and advocates for the mentally ill agree that better treatments are needed. Researchers are studying people who are able to manage their disorder successfully to develop better talk therapies; they are also searching for the causes of schizophrenia to help try to prevent it and to develop better medications.
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Some researchers are looking at videogame-like “brain training” programs designed to address the cognitive and social difficulties that often underlie schizophrenia. While hallucinations may be most commonly associated with the disease, it is in large part cognitive problems — involving memory, attention and problem solving, for example — that prevent people with schizophrenia from holding down jobs and functioning socially.
Sophia Vinogradov of UCSF is testing one such system. The training involves exercises that involve learning to distinguish between different auditory tones and listening to and remembering snippets of speech and stories.
Brandon Staglin, a research participant with schizophrenia, recently described how the approach has helped him. He wrote on the blog of the International Mental Health Research Organization:
My favorite exercise involved playing a character traveling through time on a unicycle and jumping over obstacles in sequence as instructed. This exercise was hosted by a crusty engineer character who called himself “Grampa Lugnut.” Whoever designed the presentation was pretty creative.
In the end, I was tested again and my cognitive scores had improved across the board! I felt my quality of life had improved too. I recall that when talking with friends and family around that time I felt much more relaxed and that my sense of humor had returned. I also felt (and acted) more socially adventurous. I think improvements in my ability to parse conversation helped me to relax in social situations. Within a year I was able to return to work and life among friends.
Researchers are also starting to unravel the causes and contributors to the disorder. While the idea of the “schizophrenogenic mother,” who was thought to cause the disease by abusing her child, has been thoroughly discredited, studies now suggest that severe childhood trauma may precipitate or exacerbate the disease in some who are genetically vulnerable.
Holt, for example, was placed in an abusive orphanage when he was three. Separated from his siblings, he was beaten regularly, “sometimes with a board, sometimes with a Ping-Pong paddle, sometimes with a razor strap,” for failing to memorize Bible passages.
It is not hard to imagine how someone who suffered such early loss and was treated so harshly might develop a self-hating and insult-strewn internal dialogue. If Holt had a predisposition for difficulties in distinguishing between his normal internal thought stream and voices coming from outside, his early experiences may have contributed to his symptoms.
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Other research has recently begun to identify the genetic changes involved with schizophrenia, which appears to be driven by brain development problems that may begin in utero — even though symptoms of the disease typically don’t appear until late adolescence or early adulthood.
A just-published study in Nature Genetics, for example, compared people with schizophrenia who had a family history of the disorder and those who did not. Only one in 10 people with schizophrenia have a parent with the disorder, but that does not mean that the disorder doesn’t have genetic roots. In at least half of these “sporadic” cases, new mutations appear either during embryonic development or in the making of the sperm and the egg. Researchers identified mutations in 40 different genes in the sporadic cases they studied, some of which have previously been associated with schizophrenia or with other conditions like autism.
The variety of genes involved is not surprising, nor is the fact that the same genes may contribute to the risk of developing different disorders. Brain development is extraordinarily complex and interconnected. Disorders like autism and schizophrenia share some symptoms — for example, social withdrawal and problems understanding the minds and intentions of others.
Although the new research does not yet offer anything like a cure or preventive treatment, the combination of new insights into recovery and new discoveries in the biology of the disorder offer real hope that better care is possible and not so far off.
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Maia Szalavitz is a health writer at TIME.com. Find her on Twitter at @maiasz. You can also continue the discussion on TIME Healthland’s Facebook page and on Twitter at @TIMEHealthland.