Social Defeat as a Possible Cause of Psychosis in Down Syndrome
When my son began to display signs of psychosis in his early 20s, you can bet I searched desperately for answers as to what could have caused such a devastating turn of events? How could this happen? We tried so hard to give him a peaceful and loving home life. He had a brother, neighborhood friends and cousins to play with, an intact family, stay at home mom, excellent inclusive school system, lots of social interaction at school and organized sports. What could possibly have caused his break from reality? I searched my heart trying to discover what I had done wrong? What had we done to damage him so deeply? Eventually, I formed a few theories and the concept of “Social Defeat” is one that sticks with me, if there is any reason at all. Well, other than a possible family history of undiagnosed depression (maybe bipolar) relatives lurking in my family tree.
Social Defeat is term I came across early in my search for “causes of schizophrenia.” In one paper published in the Bristish Journal of Psychiatry, low IQ and social standing as an “outsider” can be a risk factor for Schizophrenia.
Social defeat: risk factor for schizophrenia?
JEAN-PAUL SELTEN, ELIZABETH CANTOR-GRAAE The British Journal of Psychiatry Aug 2005, 187 (2) 101-102; DOI: 10.1192/bjp.187.2.101
First, I’d like to say: the current official answer seems to be that Schizophrenia has been documented in all cultures worldwide back through the ages. Other than a family history of mental illness, there is no definitive cause. Shockingly, it affects 1% of all populations, although it is more common in males. I was shocked to learn this statistic … 1 in 100 people have Schizophrenia? Is that number for real? Until it appeared in my son, I would have guessed that it was more rare than Down syndrome! But in truth, it is 8x more common! For various reasons, I believe people keep this diagnosis close to the vest. Mostly, I think there is shame that the family somehow caused it, or worry that others will be afraid of their family member.
I knew in my heart that my son grew up in a loving home, and I could think of no traumatic experiences that could have broken him in this dramatic way. His grandmother passed away, respite caregivers & workout buddies moved on to other careers, his favorite soccer coaches stepped down. There were a few things like these that, I suppose, could have been more devastating to him than I realized… I’ll write about those in a different post (a person with Down syndrome losing important people in their life.) But Social Defeat, is one idea that really made me say “Ah ha! There really could be something here.” especially in when you think about it in relation to high functioning young adults with Down syndrome.
As I remember it, I came across a paper online that described the phenomenon of social defeat in this way: That Schizophrenia has been documented to occur more often urban settings, and that it sometimes strikes people who are outside the norm for the population in that setting. Such as an immigrant who does not easily integrate into the community. I believe the paper used an Indian man as an example, who dreamed of America as a place that he could reach great heights of success, without being held down by the class system of his country. He scrimps and saves and finally is able to travel to “the land of opportunity” where anything is possible. But once in the “Big City” he soon discovers that he is discriminated against for being a foreigner, and finds himself working as a cab driver where he is berated for his accent. He works endless hours to live in a tiny apartment and becomes increasingly lonely, isolated and disappointed. The contrast between what he expected & thought possible is so far from the reality of his situation, that he is eventually “defeated” by the insurmountable obstacles he faces. He eventually develops a hostility toward the new community and descends into a fantasy world to escape the painful reality of his situation.
In my mind, a form of ‘Social Defeat’ could be experienced by a person with Down syndrome, not just due to teasing and low IQ. But almost the opposite situation: a bright child with Down syndrome, in our current society could become a victim of unrealistic expectations. I know this is going to strike many people as very un-PC. Please remember that I am a mother of boy with what I thought to be a very bright and independent future. I understand that his academic abilities and social skills were a result of that positive and inclusive school atmosphere. Everything and everyone around him were devoted to building him up, supporting his dreams, and helping him accomplish everything the kids around him could. He is more alike than different, as the saying goes. All through High School, teachers, students and parents are driving home this message to the special needs child. It is a truly a heartwarming experience to see how much the world has changed, since I was in the public school system. But that child has an innocence that does not always include a realistic grasp of how long and hard people work to achieve those goals.
Once high school graduation was over, something terrible happened for my son. He entered the Adult Transition Program, which would keep him in the school system until age of 23. My son, who like all the other graduating seniors, dreamed of going to college (my son insisted that he would attend New York Film School) found that the ATP program was housed in a temporary building on an Elementary School campus! Instead of heading off to new exciting horizons … his future took him to a trailer next to the kindergarten playground. My heart broke for him, and I begged the district supervisors to reconsider the placement.
At the last minute, it was decided that the ATP Program would be moved from the high school campus to the elementary school campus. I was so sad for all the young adults. To be sent to a “little kids classroom” felt like the ultimate humiliation after all the pomp and circumstance of graduation. Graduation to what? Back to kindergarten? What administrator thought this was an acceptable idea? Clearly not one who valued the growth of a group of young adults with special needs. Apparently they didn’t think that one of those needs was dignity.
I wish now, in retrospect that I had pulled him from the program and pursued a program of my own making. But I didn’t have the foresight of how deeply this would hurt my son’s psyche. Now, I must admit that it is possible that my son was already beginning the slow descent to psychosis. There were many small signs throughout his teenage years that he was withdrawing socially. He no longer wanted to spend the night at his friend’s houses. Toward the end of his senior year, he developed a strange ‘tic’ where he would rub at a dry spot on his chin, obsessively, eventually causing a constant red raw spot on his chin. He got quieter, for sure. And maybe a little grouchier. Most things seemed like normal “teenager” behavior. But after graduation, things seemed to start going downhill much faster. And he increasingly grew to dislike anything to do with “special needs” activities. He grudgingly participated in Special Olympics activities and other special needs sports programs, but increasingly refused to interact with the other kids.
As I said, Social Defeat is but one of my many theories of “what happened” to my bright, beautiful boy. Many of my theories include mistakes I made as a mother; especially as a mother of a child with Down syndrome. I’ll discuss those in future posts. But in this post, I just wanted to toss out the theory of “Social Defeat” because I feel there are some implications for young adults with Down syndrome. The huge disparity of what they believe to be their future and what actually happens, I think, could possibly be a devastating shock. I suspect that the higher their IQ, the more painful the realization. I don’t know… I’m just grasping for straws here and this is one possible contributing factor. Whether it fits into the description of “Social Defeat,” I’m not really sure. But that’s how I describe it.
In retrospect, with my son, I do see how his growing realization of what Down syndrome is, and how he began to believe it affected his future came upon him like a ton of bricks. I believe it threw him into a deep depression and I did not realize it until it was too late. It’s possible that I did a really bad job of explaining Down syndrome to him. I don’t know. Maybe no matter what I did right or wrong, my son would still have developed Schizophrenia in his twenties. I’m not sure I’ll ever know.