Monday, February 16, 2009

"Symptom Lists can be Powerful Things"

As one self-proclaimed cult expert's website states, "symptom lists can be powerful things". Indeed they can, although not in the sense that particular website author means it. Symptom checklists such as the one presented on that website are notorious for leading people into believing they have syndromes that lack good research support. A well-known example of this were the checklists published that supposedly indicated people had repressed memories of sexual abuse, which were laundry lists of symptoms that just about anybody could be experiencing for a variety of reasons. For example, people with weight problems were told that this meant they had repressed memories of sexual abuse, ignoring the many other reasons a person might have a weight problem. People who had such symptoms were then subjected to years and years of therapy that may have ended up doing them more harm than good.

Something similar is occurring with the alleged "post-cult syndrome" where a wide variety of symptoms that could have a number of possible causes are attributed to an ex-cult member's past cult experience. There is no solid evidence for such a "syndrome" and I would highly recommend that the therapy consumer beware of websites claiming such and posting lists of symptoms, repeatedly offering an icon for people to click on, claiming that help starts by contacting the therapist.

There is no good evidence that most people who have been in cults need specialized "post cult" therapy which has become a cottage industry for certain ex-cult members. First of all, such symptoms can be the product of suggestion. As someone who walked out of Scientology, I never had some of the symptoms such as "floating" because I walked out on my own and didn't go anywhere near any anti-cult organization for 12 years and thus never knew I was supposed to "float". Later when I participated in research and took the Dissociative Experiences Scale, I scored very low on it meaning I do not have dissociative symptoms (although even a high score on the DES does not necessarily mean the person has a clinical problem with dissociation). Granted, this is an anecdote, but so are the reported experiences of people who claim to be suffering from this "syndrome". There are anecdotes of people who have suffered greatly and anecdotes of people who have done just fine without therapy and have not had such symptoms. However, the studies done have all too often focused on the people who were exposed to descriptions of post cult "syndrome" and were seeking help -- a very biased sample that did not include people who did not know about the "syndrome".

The claims therapists make about so many people having these symptoms are based mainly on people who seek out their help for their cult experience. How about the many people who did not seek therapy, who felt no need to do so and are doing just fine? We don't hear about those people because therapists never see them. The problem now is that people who are walking out of groups on their own and surfing the web could be influenced by the websites suggesting all these symptoms and I am concerned that these checklists could become self-fulfilling prophecies, just as the checklists for repressed memories of sexual abuse were for so many people in the 1990s.

The other possibility is that people could be actually experiencing those symptoms for reasons that have nothing to do with the cult experience. The average age of onset for a number of disorders is late teens, early 20s, which is the same time many people get involved in cults (although of course there are others who get involved at a much older age). If the person's cult experience coincides with the onset of symptoms, we cannot say that the cult caused it. The person may have developed the symptoms anyway. The only way for people to know is to be assessed by a skilled mental professional who bases his or her practice on actual evidence rather than being mainly focused on unsubstantiated "syndromes". Also beware of people claiming their practice is "evidence-based" who then refer to studies that are published by organizations with a vested interest in the form of therapy, rather than an independent peer-reviewed journal (the blooming cottage industry of "e-therapy" appears to be doing this, hyping benefits that have yet to be independently established by researchers who have nothing to gain financially).

5 comments:

  1. Hi, Monica,

    You reference my article on website. You may have not had a chance to read widely on the site, but I do NOT discuss a post-cult syndrome. And I make explicit points that most people do not need professional help after leaving toxic groups. I do NOT make lists of cults, either. In my practice, I emphasize recovery from the various challenges and symptoms that people experience. And as in all therapy, the responsibility for recovery is squarely with the individual.

    I'm not saying, Monica, that we agree on all points, but you may find that your description of my website is rather more extreme than what my positions are.

    J.

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  2. The issue I have is not with any list of cults but rather, with the very long list of symptoms you posted in the above-referenced article and your assertion that "symptom lists can be powerful things". As I read the article, I was really hoping that you would at least have a few words of caution about the drawbacks of symptom lists and that people should be cautious about attributing anything and everything on that list they identify with to a cult, but I couldn't find any such disclaimer. Symptom lists, whether you explicitly used the word "syndrome" or not, can be very dangerous things if they lead people to conclude that anything they have that is on that list was caused by their cult involvement. Not necessarily, for the reasons I mentioned. These symptoms could have all kinds of different causes other than a cult involvement. What I find disturbing is that ex-cult members and those around them tend to attribute anything that seems out of the ordinary with the person to their "cult involvement" when there could be other contributing factors. I really think that people need to understand this.
    And actually you do use the word "syndrome" in one of your articles where you wrote:
    http://knappfamilycounseling.com/cultstrengths.html
    "I can't tell you how many adult children of alcoholics realize they suffer from a treatable syndrome just from reading such a list."
    Adult children of alcoholics is yet another highly questionable "syndrome" without any real scientific validity, but your statement about this implies that the lengthy cult symptom list you posted is also a "syndrome". You and I have a very fundamental disagreement because I think this kind of "syndrome" turns people into victims who can easily develop the tendency to attribute anything that goes wrong in their life to being an "adult child of an alcoholic" or in this case, an ex-cult member. It's great business for therapists but not so good for the individual and, in my opinion, not empowering. There are many ex-members of 12-step and Alanon groups who would support me on that.

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  3. Just to add to that, I do see that you noted the danger of falling into the victim mentality in that same article. However, although you posted a list of strengths associated with ex-cult members there still was no word of caution regarding the symptom checklist and how people can be seduced by such lists into assigning a single cause to everything that is wrong with them whether it is being an adult child of an alcoholic or having been in a cult.

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  4. By the way, I also find this quote from your FAQ highly disturbing where the person writes:
    I'm not usually like this. I pride myself on being organized, and punctual, getting done what I say I will get done. Before "therapy" "I set up a business of my own.... After the "therapy" I was just barely able to stay out of bed more then three days a week. That has gotten better and I rarely stay in bed and may nap once in a great while, as I am extremely tired all the time. I wonder if that is ever going to go away."
    Does "therapy" here refer to post-cult therapy? If so, I'd say that is cause for concern. People should not be feeling worse after therapy and I would be very wary of any therapists who claims one has to get worse before getting better, which is what this appears to imply. I wouldn't recommend the person go to bed and liken the cult experience to "recovering from a heart attack" as you did. That is certainly an extreme example of literally medicalizing the cult issue which is precisely my problem with what goes on in some cases where people are offering post-cult therapy. If the person was functioning well before therapy and then goes downhill, that is an warning sign about the therapist, in my opinion. Anyone who feels that way after getting therapy should consider at the very least, getting a second opinion.

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  5. FYI, John, there seems to be a great deal of material here that needs to be unpacked and discussed in more depth than blog commentary allows. Therefore I have taken my further comments to my yahoogroups list serv:
    http://groups.yahoo.com/group/AntiCultControversies/message/46

    The archives are public. You are most welcome to join in on the discussion.

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