As a result of one such conversation a friend brought a post at schizophrenia.com to my attention several weeks ago. The question had been posed: Can child abuse cause schizophrenia?
The poster had apparently done some research of their own and came across this article posted at Psych Central which they then linked in that thread. Among other things, the article notes: Their evidence includes 40 studies, which revealed childhood or adulthood sexual or physical abuse in the history of the majority of psychiatric patients and a review of 13 studies of schizophrenics found abuse rates from a low of 51% to a high of 97%. Psychiatric patients who report abuse are much more likely to experience hallucinations – flashbacks which have become part of the schizophrenic experience and hallucinations or voices that bully them as their abuser did thus causing paranoia and a mistrust of people close to them.
A moderator at schizophrenia.com responded to their post as follows:
That statement caught my attention on three counts. The first is that Psych Central is one of the oldest and largest mental health sites on the net. Along with hosting an online community where I can be found on occasion, it also features member blogs and publishes numerous peer-reviewed articles. I'd never heard anyone refer to the site as "anti-psychiatry" previous to this.
The article you referenced above is not from a reliable source. Psych Central sometimes publishes articles that are antipsychiatry in nature. This is an example of one of them. The research mentioned in the paper is questionable due to the origins of the article. Note that the study was not published in one of the major peer reviewed publlications...
Source: schizophrenia.com
The second was that many months ago I was briefly a member of schizophrenia.com. I lasted about 24 hours but my troubles began when I, too, made reference to John Read's work. As a result, the third detail that caught my eye was the moderator's assertion that John Read's work had not been published in a reputable journal. I knew that wasn't true.
I responded to that post at Psych Central, noting that Read's work had originally been published in "Acta Psychiatrica Scandinavica [Read, J., van Os, J., Morrison, A.P., & Ross, C.A. (2005) Childhood trauma, psychosis and schizophrenia: a literature review with theoretical and clinical implications. Acta Psychiatrica Scandinavica, 112, 330-350]." I suggested that anyone who might be a member of both sites share that detail at schizophrenia.com but nothing came of it.
Weeks passed and then, about a week ago, someone pointed out a post about recovery and "true healing" that had been started at schizophrenia.com. The individual who initiated the post asserted that any talk of cure was nonsense and that the individual who suggested as much might be suffering from a "mental condition".
I've seen many of these kinds of posts go by with minimal comment before. Occasionally someone might note they heard of someone who made a full recovery and not infrequently, there will be posts from individuals lamenting the burden they've been given -- a cross to carry for the rest of their physical existence -- but rarely have I seen anyone provide any verifiable information on recovery that people can follow up on.
This is old ground and those of you who might have read this blog before know what happens when hope vanishes. Despair sets in.
Several months earlier I'd been told that I had never really been banned from schizophrenia.com. Rather, SZ Admin, the site founder and primary administrator asserted that people will sometimes try to log-in when the server is down and they'll interpret their inability to gain access as the equivalent of being banned. None of this equated with my former experience of repeatedly trying to log-in while the server was up and running and not being able to do so over a period of several days, or of attempting to log-in and being immediately transferred to an administrator's profile, incapable of going any further.
Still, I was bothered by the idea that such a dismal statement was going unchallenged. I've discussed the role of mentors and their role in the recovery process in numerous conversations over the years. A mentor is someone who inspires and encourages you; they've gone to the places you want to go, they've done the things you want to do. In the early years of my own healing, I read the recovery stories of others many, many times over. Those accounts gave me hope. They gave me motivation. I needed that. I needed to know that however messed up life might have been for awhile, things could get better for me.
So it was that with very hesitant and doubtful fingers, I entered my log-in information. Incredibly, my efforts were successful and I was transported to the thread: Kamal84 and the rest who share his/her view on how to truly heal.....
In my response to that initial post I noted that many people have made full recoveries. To demonstrate the validity of that claim, I cited the names of several professionals -- all doctors -- who had made full or partial recoveries: Daniel Fisher, Rufus May, Patricia Deegan, Christiane Northrup, Frederick Freese, Ronald Bassman, Edward Whitney, etc. I also shared a link to the blog I have where I've collected the stories of those individuals along with several others.
My words prompted Dugal, the assistant administrator to edit an earlier post of his own to add the following notation: You should also have a look at page 113 where Torrey indicates "the recovery model" has no foundation in scientific studies or data. ... Also have a look at page 435 "Scientologists, Anti-Psychiatrists, and Consumer Survivors".
I'm not sure if Dugal meant to imply that all those doctors must be scientologists, anti-psychiatrists or consumer survivors, or if I was. I didn't get the chance to ask.
When people here are being coached to refute studies from an organization as reputable as the World Health Organization, when posts are being deleted about doctors who have recovered, and when schizophrenics are being targeted and harassed by the moderators and administrators... it doesn't take a rocket scientist to figure out that something's not healthy.The conversation continued with one member noting his doctor had told him people can be misdiagnosed. "That's not cure," the thread initiator argued, "because they were never really sick to begin with."
In response, I quoted an excerpt from an article written by Daniel Fisher: We who have recovered from mental illness know from our personal experience that recovery is real...
When asked by another member to define what I meant by full recovery, I quoted Courtenay Harding's definition and provided a link to her Vermont Study on long-term recovery: When we talk about subjects who are recovered, we're talking about no medications, no symptoms, being able to work, relating to other people well, living in the community, and behaving in a way that you would never know that they had had a serious psychiatric disorder ...
A member of the community posted to thank me for sharing that information. He/she shared that it's something they feel needs to be talked about but people are afraid to do so.
All those posts were rapidly deleted by the administrators. This prompted another member to ask why, to which they were informed by an administrator:
I've never been shy about my lack of diagnosis although truthfully, what did it matter? I wasn't talking about my experience -- I was talking about other people who have recovered and a study that demonstrates many people get better, even those who have been severely ill for decades. No matter. His assessment was: Bullshit.
The poster you mention above has never actually been diagnosed with anything. She only believes she had schizophrenia and has recovered. The research on schizophrenia in recent years has conclusively shown that the approaches favored by her are not helpful to most schizophrenics in treating their illness. She may be a great and inspirational writer to you but to me it mostly looks like bullshit. She is well aware that she is not welcome here.
Primary administrator SZ Admin stepped into the ring at this point to quote from one of my other blogs and express some doubts he had about my diagnosis. In the interests of full disclosure, I responded and included some personal details related to that experience which, among other things, included:
- a 10 month prodromal period [*]
- 6 weeks of active psychosis
- 14 months before I was capable of returning to work in a part-time capacity only
[* Actually, this was 14 months. I'd forgotten to include the four months I spent trying to figure out if I had died and if so, how I'd managed to keep on living.]
SZ Admin responded: Again, by your own description you have never met the criterion for a schizophrenia diagnosis - as defined in the DSM - IV. Why don't you go find a "temporary psychosis" web site to spam. ... 6 weeks of psychosis does not mean a definition of schizophrenia - irrespective of any self-diagnosed prodromal phase, or coping problems afterwards. Then he criticized me for dominating the conversation yet it was he who'd asked me for clarification and dragged in the quote from my Voices of Recovery blog.
I suppose I could have said that I'd seen a psychiatrist and had a diagnosis -- it's what everyone else says and it appears to pass muster without question. But not only is that not true, it wasn't even the issue. I shouldn't have to have a formal diagnosis in order to share information about people who have recovered, particularly when I'm linking those claims to verifiable sources.
Meantime, I found myself wondering, is it too much to ask that a primary administrator be knowledgeable of the basic criteria required for a diagnosis of schizophrenia? I reminded SZ Admin of this quote from his own site:
The diagnosis of schizophrenia, according to DSM-IV, requires at least 1-month duration of two or more positive symptoms...
Continuous signs of the disturbance persist for at least 6 months. This 6-month period must include at least 1 month of symptoms (or less if successfully treated) that meet Criterion A (i.e., active-phase symptoms) and may include periods of prodromal or residual symptoms. During these prodromal or residual periods, the signs of the disturbance may be manifested by only negative symptoms or two or more symptoms listed in Criterion A present in an attenuated form (e.g., odd beliefs, unusual perceptual experiences).
Source: http://www.schizophrenia.com/diag.php
Months ago, when I had my first encounter with schizophrenia.com, I'd pointed out a flaw in the quiz I'd been encouraged to take in regard to this very issue. At the same time, I'd further noted that according to the quiz writer's own account, she'd been diagnosed with schizophrenia as based on 24 hours of symptoms. It occurred to me that SZ Admin was somewhat flexible in regard to diagnostic criteria when it suited his purposes.
Shortly thereafter the original poster showed up to exclaim that "a delusional wildfire" had taken hold of the discussion and a "disaster" had occurred. I asked her what was disastrous about recovery and it was right about then that assistant administrator Dugal began to tag all my posts with the label, "Nasty Namaste". Presumably, he intended to demean me before the community. What was especially bizarre about his behavior was the signature tag that followed each jeer and jab: Please be civil and supportive. [Note: A number of the posts in this thread have since been deleted or modified, particularly those where assistant administrator Dugal repeatedly referred to me as "Nasty Namaste". Other posts of Dugal's in other threads have also been removed or had that term edited out.]
Are you all getting the full dysfunctional picture here?
- The site founder and primary administrator doesn't seem to have a firm grasp on the essential diagnostic criteria of schizophrenia, nor does he hold his administrators to any guidelines for minimal standards of behavior.
- We have a second administrator who labels people's posts regarding verifiable recovery as "bullshit" with the site founder's apparent tacit approval.
- We have a third administrator who targets and harasses members, also with the site founder's apparent approval.
You'd think that some kind of rationality might have kicked in and prompted someone, ANYONE on the administrative team to rein in their behavior if only out of embarrassment. But the show went on and then it carried over to another area of the site where the member who'd questioned why my posts were being removed was then targeted by assistant administrator Dugal.
In an effort to cast doubt and try to create suspicion about her among her peers, assistant administrator Dugal revealed to the rest of the community [... insert drum roll...] that her IP address was exactly the same as her husband's. Why would a site administrator do such a thing? The only shocking thing about this is that:
a.) there is nothing surprising about a husband and wife having the same IP address;
b.) administrators are supposed to respect the personal and confidential details of members;
c.) administrators in environments that bill themselves as supportive are supposed to actually be supportive.
Meantime, another member had also singled out and targeted that member. What occurred in that thread was something that most of us would have no difficulty recognizing as brutally unkind. At one point, that member referred to this individual -- someone who has made incredible strides in their own recovery, which includes a history of abuse in childhood and adulthood -- as an "it". An "it". It was a complete and total invalidation of her essential humanity that served to retrigger her early experiences. No moderators stepped in to stop her tormentor; they didn't seem to see anything inappropriate in his behavior.
In my recent wanderings I came across the following. It strikes me as highly applicable:
I don't think it's rash to suggest that if the above is true of family environments, it's also true of online environments.
Evidence is also consistent that negative attitudes towards individuals with (or with a risk of developing) schizophrenia can have a significant adverse impact. In particular, critical comments, hostility, authoritarian and intrusive or controlling attitudes (termed 'high expressed emotion' by researchers) from family members have been found to correlate with a higher risk of relapse in schizophrenia across cultures.
Source: Environmental Factors in Schizophrenia
Yet, that's the environment that the administrative team of schizophrenia.com creates. That's the example they set, from the site founder down of acceptable behavior for an online community that bills itself as the #1 support site for schizophrenics on the net. It is a place where people in recovery are mocked, ridiculed, silenced, slandered, targeted, set-up, verbally assaulted, demeaned, belittled, frightened and denied the opportunity to nurture hope by the community's leaders.
Given my experience of the site I can understand why they feel compelled to minimize John Read's work demonstrating the link between abuse and schizophrenic episodes; in order for them to accept that reality, they'd also have to accept that their own behavior is all too frequently, abusive. Abusive environments do not lend themselves well to recovery. More often, you must leave such environments before you can begin to get well.
I do have one heart-warming detail to report. The vast majority of participants hold themselves to a higher level of personal standard even though they are the ones who are supposed to be ill. Such is the insanity of schizophrenia.com -- the people who are most in need of healing are the administrative team.
~ Namaste
See also:
Update: I attempted to briefly participate at schizophrenia.com. I didn't anticipate it would go well but I was willing to give it a shot in case I'd been wrong... in case there'd been a change of heart. I did enjoy connecting with a few of the people there but ultimately, it didn't go well. Yesterday the primary administrator decided to run a "poll" to determine if my presence should be tolerated at the site: Your Thoughts On Spiritual Emergency.
In the interim, a number of the posts made by assistant administrator Dugal have since been heavily edited or deleted as if they'd never been there at all. Posts by other members who joined into his attack have also been removed. Something is wrong with the entire picture. It's not that it couldn't be good -- people will always benefit from peer support -- but the administration is not healthy.
One member has shared that schizophrenia.com is the equivalent of "an online psyche ward" where administrators are the equivalent of nurses/authoritarians and emphasis is on dominance, control, compliancy and cover-ups designed to protect the abusers, not the abused. If you think you can function well in that kind of environment -- it's the place for you. If you don't think you can, you'd best look elsewhere for your online support.
schizophrenia.com remains the only site on my list of potential support venues that comes with a heavy warning caution.
