dissociative identity disorder, Informative and educational writings, professionals, Uncategorized

12.8% times two – Our response to the six-year follow-up TOP DD study.

The Stronghold System from Power to the Plurals responds to the ‘’six-year follow-up of the treatment of patients with dissociative disorders study’’

After our episode on the SystemSpeak podcast, which was epic by the way, so we highly recommend you check out their amazing work! Some people pointed out (including or after Mister Barach’s comments) that the study I quote in my article ‘’Why the theory of Structural Dissociation is ableist’’ with the 12.8% fusion integration success rate, is only half the information. Those people have told me it is important for ethical reasons, to let you all know that the success rate in this study, of finishing therapy without final fusion integration is also only 12.8%. So, I will very gladly elaborate on that in this article. 

As to rectify to some, that this study seems to somehow equal that functional Plurality, Multiplicity (or whatever other term you prefer) is also not achievable or successful for most people with DID. Please know DD stands for Dissociative Disorder in the quotes in this article. 

Intro

Firstly, let me start by saying that this article focuses on the study rather than the treatment guidelines. There are good aspects about the three-phase therapy model that the treatment guidelines for adults by the ISSTD provide. However, we know it is outdated, it certainly does not serve everyone. It’s highly incomplete and too open for interpretation of individual therapists. Which can be a blessing and a curse in all seriousness. I am sure we clients are guilty of doing the same thing.
Often, it is also based on culture and language interpretation, with only an English and French translation available. This study was held internationally over a 6 year time period. ‘’The prospective, longitudinal Treatment of Patients with Dissociative Disorders (TOP DD) study is the largest treatment outcome study conducted with DD patients. TOP DD followed a large, international naturalistic sample of DD patients treated by outpatient community therapists.’’ – TOP DD study, page 1. 

The missing definition of integration

This study does not mention a definition of integration, other than mentioning phase three of treatment. The notes only mention ‘’There was less uniformity among experts in the last stage of treatment.’’ – If we then read the ISSTD treatment guidelines ourselves, they only quote Kluft saying final fusion integration is the best outcome and then make statements without sources on harmony. I still don’t know where that terminology comes from. Then, they mention resolutions as a more realistic outcome. As far as I am aware the term resolution also comes from Kluft and he states in his 1999 paper: An overview of psychotherapy of dissociative identity disorder, “a smooth collaboration is resolution; the alters bleeding into unity is an integration.” This is also what I read with different words in the theory of structural dissociation. 

So, I can understand how there is (most likely) not one definition given to the therapists or clients who participated in this study. Therefore, that means that audiences got a different understanding on what this therapy and/or what the study includes and entails. Most importantly what the outcomes of the study were. Or, to put it in simpler words, all these people choose one of the many, many possibilities of what the word integration could mean. Which is personally, one of my biggest problems with this therapy model. Please be aware, in this (and any other) article, when I mention integration I am talking about the final fusion form of integration, unless other specified. – Okay, let’s dive deep: 

Successful resolution in therapy does not equal functional Plurality.

The form of therapy offered in this study, is focused on the end-goal of integration. Not functional Plurality. Unless a therapy model is formed, the focus on functional Plurality without it being second best and with a lot more focus on ‘harmony’ and than that being studied, it’s really not fair to just take any other study and apply it to the concept of functional Plurality because of the some, 12.8% of those in the study finishing therapy without integration. That is not the same thing as functional Plurality. At least not in my opinion. We deserve a lot better than being second best. It mentions three-phase therapy but no more than that. (Stabilization, trauma work, integration.) It is unclear, but seems unlikely, that all therapists participating in this study, treated their patients in the same way. Even if they all followed the three-phase model. Nor, do all patients have the same therapeutic needs or desires, hence my earlier statement that this therapy model does not serve all. 

61.7% of people participating in this study, have not completed therapy after 6 years. But that might only be the case, because the end goal of the three-phase therapy model is integration and they have not achieved that yet. So, to some therapists and/or clients, it might be unclear when therapy is completed if integration is not reached. As often integration is still seen as an end goal and sometimes even as an event. It might also be why some other clients were reported to have ended therapy early. Did they really though or were some of them happy with what they achieved, but did the therapist not agree, pushed integration ideas or assumed therapy is not finished until integration is reached, especially in regards to this study? We do not know. But it makes me appreciate Kathy Steele’s quote even more:

Text continues underneath the image.

e1.png

[Image description: long sand road on a small hill with grass on either side and a blue sky, with some small clouds. In black letters it says: ‘’Integration is a journey, not an event and never finished.’’ By Kathy Steele] 

The remaining questions

It is not mentioned how high percentile of people desired fusion integration and at which phases of treatment. Nor is it mentioned how many percentage of their system wanted it. System size is also not taken into account. Elaboration of parts (name, age, interest) is also not mentioned or specified in any way. Furthermore it is not defined how many hours of therapy are spent each week and if that was the same for each client. It is also nowhere specified what kind of dissociative disorder the participants of the study hold. Or, if they followed other forms of therapy at the same time. Nor is medication (usage) mentioned in this study, although the notes mention that prescription or illicit drugs significantly decreased over time in treatment. But it mentions no percentage. Additionally, how many have (had) comorbid disorders. The only mention states, ‘’Outpatient Dissociative Disorder treatment is also associated with enduring gains over time, including decreased dissociative, depressive and post-traumatic symptoms, self-destructiveness, and symptoms of comorbid disorders, as well as increased adaptive functioning. (see Brand et al., 2009)’’

The involvement of the DD patient

The study was done with (singlet) therapists reporting on their (previous) DD clients. ‘’TOP DD patients were not contacted to participate due to minimal contact information and concern that some patients no longer in treatment might experience distress about reporting on their current status.’’ – Nothing about us, without us. It is disappointing to read that DD patients were not even given the option to be more involved, in a study regarding DD patients where their data was already used anyway. 

The worse case scenario

So, it was therapists, not clients, let alone individuals in our systems reporting what was going on for this study. We can’t know for sure, as it is not specified and I realize this example is a bit of a worse case scenario, but if they followed the teachings of structural dissociation and they spoke only through the main ANP, then we get the whisper game (sometimes called telephone game or chinese whispers.) Where an EP tells another EP, who tells the ANP, who tells the therapist, who tells the study, who tells clinicians and other interested and now I am telling you. So, clearly that information is really not guaranteed to be genuine anymore. Even if multiple controls and tests were used to make sure it all went as ethical as possible. It never gives the full picture and is always generalised and only from a clinical perspective. I highly recommend that you read these studies yourself when I or others mention them, if you are able & stable to do so.

Less hospitalization is a great outcome

The good thing shown in this study is that people, after six years required less hospitalisation. That’s a great outcome for DID patients, if you ask me. But if you ask this study, it only points out it’s good for decreasing financial budgets for early childhood trauma survivors, like Adverse Childhood Experience (ACE) scale and studies teaches us.
But, we as people living with DID know exactly why we do not go inpatient again or to the hospital less. It’s a shame that it is not specified in this study, it should have been. First of all: we are often not admitted and often send home. Secondly, we often end up worse there, as staff are not trained for people with DID or any other dissociative disorders for that matter. Thirdly, we can often not afford it (anymore.) How many in this study, did not go back to the hospital because of financial reasons or because they lost hope and learned by experience they were most often, safer and saner in their own safe environment? It was reported in this study that there was no difference in the statistics for suicide attempts. 

But less hospitalization is certainly not the best outcome

So, imagine if hospitalisation would have worked for people with DID. Then we might go there when in crisis, be accepted in and most importantly kept safe and treated well, and hence then the suicide attempts percentage may go down. Besides the financial aspect, I do not understand how it can be better that we do not go to the hospital, when have the same statistics for suicide, which are extremely high. The clinical community sees this as a great achievement. Personally, I find it highly disturbing. To read anything else into this is ignorant. I think it is also vital that these statistics are compared to the DSM-5. As it claims that 70% of people with DID have repeated suicide attempts. After six years, there were no differences reported in self harm either. 

Personally from reading this study, I get the impression that many of these patients in the study, were already quite stable in the first place. But, they explain this is not able to be measured ethically, so sorry if my personal observation, from the far sideline, is wrong in that regard. The majority of patients were reported to have a GAF score (Global Assessment of Functioning) of six (moderate symptoms) and no lower than three on a scale of one to ten. But, this is pretty broad to go on, if you ask me, especially in the case of DID. As it could vary greatly through phases of life and treatment. And is extremely dependant on who is fronting in the system, especially in the 167 other hours of the week, when we do not have therapy, and with that no clinical observation.

The interpretations of revictimization

One thing shown in this study is the odds of experiencing recent sexual revictimization, as they were 60 times higher at the beginning of the six years then at the end of the six years. Or at T2 compared to T5 to be more specific. It bothers me greatly that this study leaves open to interpretation what the reason for that statistic is. Although I understand it varies per client, it does not even remind the reader that in the case of intimate partner violence (IPV) the other party is to blame for at least 50% (if not 100%) of that (and any other form of) abuse. 

Why it is not integration that keeps us safer

I read that certain people interpret this as phase-three fusion integration specifically, is the safest option, like Kluft claimed, because it lowers the chance for revictimization. It does not specify integration percentage in this part of the study and remember the integration rate was only 12.8% to begin with. Hence, it can’t correlate to a statistic this high on revictimization. This study shows it is specialised treatment that lowers the rates of revictimization, not integration! In the notes, it does specify that people who were part of the improving (not integration) group, are victimised less, but if symptoms (not integration) are worsening, the rate of sexual revictimization increases. It also specifies that if there was violence in childhood it increases the likelihood of IPV in adulthood. It does not mention anything about the abusers who re-victimise the DID clients or anything on their childhood, motives or possible diagnosis.

Problematic relationship skills

The study then elaborates extensively on how problematic our relationship skills remain. But does not mention the singular normative society, if the partners in the romantic or friendship relationships were Plural (or DID) themselves or not, if the plurality came as a surprise or was known upfront to all parties involved, if (relationship)therapy was offered to the partner. Nor if all parts or only a few were involved in the relationship, or if the relationships were monogamous, nor does it mention that relationships and friendships are always a two way street. Where a therapist often only hears one side of the story. 

Work and labor

I can write a book on this, but I’ll try to keep it short. This study talks about work a lot. It is mind boggling to me why or how it is so important to the clinical community that we with (disordered) DID can work. Instead of the main focus being, that we stay alive with a decent quality of life while we are at it. It is explained how this three-phase model can lower the financial costs, as hospitalisation is so expensive. But, then work is constantly used as a measure. Where as if you would take that out of the equation, and financial (and housing) stability is provided, and hospitals are providing good care to DID patients when needed, like when in crisis, how much would the suicide percentage drop? How is that not the main and first goal?! What effect does it have on our own children? Maybe I speak from a place of extreme privilege, as I live here safely in the Netherlands on our government’s insurance, disability and benefits, but it’s tiring to see this attitude over and over again, while all we do is try to stay alive and provide stability and a better life for our children. How is that not of utter most importance?! Especially when we read 70% repeated suicide statistics in the DSM-5! 

Conclusion

So, the reason why the three-phase therapy model works, if we follow this study, is that it keeps us 60 times safer in regards to sexual revictimization, which is absolutely fantastic! (If we read it in the right context.) But, it mainly seems to be because it can lower the cost for our governments and health insurances who have to pay for our hospitalisations, because they do not know how to lower our suicides or self harm behaviours. Nor are they able with 61.7% of people in this study, to finish therapy within six years. I think this is not a problem to the clinical community, as this is how they make money, by us being in therapy. To me, that just shows this model does not work at all in favor of those with DID. It misses vital information that we Plurals further along on the road have all walked already. It is absolutely part of the extremely long waiting lists we all experience worldwide. It works in favor mostly for the people living in a higher socio-economic bracket, such as suits who sit behind closed doors in their skyscrapers and the people who work for them and who are benefiting off us being disordered.

What this study results stipulate is achieving collateral luck of less revictimization and better GAF scores. Which I have to believe is also possible with other forms of specialised treatment, without any focus on fusion integration. I cannot wait for the day it is proven that functional Plurality can be achieved faster and with better results, especially when the client collectively longs for that. I laughed when Mister Barach asked me for the statistics on this. He knows I am not a therapist or researcher. But if a study is set up in regards to truly functional Plurality and its outcomes, I’ll gladly participate. And, if help is needed to set up such therapy or study, please know that there are people in the Plural community, who gladly would collaborate on that with the clinical community. Nothing about us, without us!


Thank you for investing the time to read this article. Please feel free to leave comments or feedback in the comment section. We hope you learned something new. If you want to support our work, we accept donations. – Together we are stronger. Power to the Plurals!

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