Robert Kolker Talks Impacts of his Novel About a Family Impacted by Schizophrenia

Robert Kolker, the author of "Hidden Valley Road: Inside the Minds of an American Family," expands on his featured session titled "Hidden Valley Road: A Story of Family, Trauma, and Hope" at the recent Psych Congress meeting in San Antonio, Texas.

The book surrounds the Galvin family—a family of 12 children, 6 of whom were diagnosed with schizophrenia.

In this video, Kolker discusses the common misconceptions he had of schizophrenia before writing the book, the key takeaways he hopes clinicians took away from his session, and how schizophrenia is "not a monolithic condition."

Read the transcript:

Robert Kolker:  I'm Robert Kolker. I'm the author of "Hidden Valley Road -- Inside the Mind of an American Family," which is a mainstream nonfiction book, a true story about the Galvin family of Colorado. This is a family with 12 children, 6 of whom were diagnosed with schizophrenia. This family became science's best hope for understanding the origins of schizophrenia and how best to treat it.

When I first was getting to know the family and telling the story of the family, I really had a lot of common misconceptions about schizophrenia. I thought it was a disease with a capital D as opposed to a constellation of symptoms that are classified as schizophrenia. That was something I really needed to learn.

I thought that schizophrenia was similar to a lot of other mental health conditions, in that it was easily medicatable, but I learned that schizophrenia really is different from those other conditions, that they're using classes of drugs that really haven't changed drastically for many decades.

It was a real eye-opener for me to see just how little headway we've made overall and how much support families really need, that for many years they weren't getting. I do see hope, however. That was the third big eye-opener for me.

I see how families today, there's a potential that life can be different for them than for the Galvins. I really have to hand it to the family to come forward and tell their story because the more people tell their stories, the more we can do to fight the stigma.

I think my discussion of Hidden Valley Road, combined with Lindsay Rausch telling some of the story herself about her family, was an important ingredient to what people experienced here at Psych Congress. It was a chance to learn from families and from the community, people who need support beyond the patient themselves.

I think that's something that more and more people in the field are really understanding has to happen with severe mental illness. It's not just about treating the patient. It's about supporting and even treating the people around the patient to make sure that they are partners in the well-being of those patients.

If you want to look at a large family like the Galvins as a case study, one of the most interesting things and the most obvious things that you'll learn the minute you get to find out more about them is how the 6 people who have "schizophrenia" actually are presenting in 6 completely different ways.

The take-home there, for me, very early on, was that schizophrenia is not a monolithic condition. It's not a cookie-cutter diagnosis. Everybody experiences it differently, even people in the same family.

The clinicians at Psych Congress and elsewhere can really take that to heart because they see it every day. They see different people who have the same diagnosis behaving in different ways. It just requires that much more sensitivity in terms of treating them.

After the talk, people came up to me to talk about supporting patients and helping understand how best to treat people who have schizophrenia and who don't believe they're sick, people who lack of self-awareness.

This condition of anosognosia is a really brutal thing. It makes it harder to do anything to help the person if they don't believe that they need help. This is the thing that people in the field really know they need to tackle next. It's about being sensitive and understanding the humanity of the patient and trying to meet them where they are.

I was just so thrilled to be at Psych Congress to talk about Hidden Valley Road. I was even more thrilled to be able to share the podium with Lindsay Rausch, who lived the story.