My young adult child has just been diagnosed with DID. Resources?
April 2, 2019 7:12 PM Subscribe
My 24-year-old has been diagnosed with Dissociative Identity Disorder during a psychiatric hospitalization. What resources on the disorder have you found helpful?
My child has a history of metal health issues, including diagnoses of Borderline Personality Disorder, Bipolar Disorder, and PTSD. They are also on the autism spectrum. We don't need general info about dealing with a family member with behavioral or mental health challenges in general--the behaviors haven't changed, only this specific diagnosis is new. We're old hands at parenting this person.
I just read the FPP on comic FB Lee the other day, from which I learned some of the language, such as referring to a person with DID as a system in a shared body. Otherwise, I am totally not up on the latest best practices or info about living with, relating to someone living with, or treating DID. I'd love books, websites, and personal insights if you have them.
In case it's helpful to know, our 24yo will be discharged from the hospital on Friday. They have a place to live that is not with us, and access to community mental health services. They have medical care, psychiatric care, and therapy in place--a good set of providers. The event that precipitated this hospitalization, and the hospitalization itself, are "normal crises" for us. The only thing new is the DID diagnosis, so I'm really just asking for your best resources to educate myself and my partner about that.
Thanks.
My child has a history of metal health issues, including diagnoses of Borderline Personality Disorder, Bipolar Disorder, and PTSD. They are also on the autism spectrum. We don't need general info about dealing with a family member with behavioral or mental health challenges in general--the behaviors haven't changed, only this specific diagnosis is new. We're old hands at parenting this person.
I just read the FPP on comic FB Lee the other day, from which I learned some of the language, such as referring to a person with DID as a system in a shared body. Otherwise, I am totally not up on the latest best practices or info about living with, relating to someone living with, or treating DID. I'd love books, websites, and personal insights if you have them.
In case it's helpful to know, our 24yo will be discharged from the hospital on Friday. They have a place to live that is not with us, and access to community mental health services. They have medical care, psychiatric care, and therapy in place--a good set of providers. The event that precipitated this hospitalization, and the hospitalization itself, are "normal crises" for us. The only thing new is the DID diagnosis, so I'm really just asking for your best resources to educate myself and my partner about that.
Thanks.
For a view through a management / engineering lens, I found this Plural Pride Playbook enlightening.
posted by batter_my_heart at 9:38 PM on April 2, 2019 [2 favorites]
posted by batter_my_heart at 9:38 PM on April 2, 2019 [2 favorites]
I read a graphic novel by Madison Clell called Cuckoo. It's from 2002. Looks harder to find - I read it from a library copy 15 years ago. But it is pretty cool - as it is a first persons account.
posted by PistachioRoux at 2:50 AM on April 3, 2019 [1 favorite]
posted by PistachioRoux at 2:50 AM on April 3, 2019 [1 favorite]
If you can read Interviewer's Guide to the Structured Clinical Interview for DSM-IV Dissociative Disorders (SCID-D)
Book by Marlene Steinberg was super insightful into how dissociative symtoms impact a wide variety of different areas, and in very different ways. I definately learned more about DID in general from this book than any other source. I also found it approachable but I work in the field so the language is familiar to me already.
It's a good foundation to understanding what symptoms there are outside of the stuff people like to focus on because it's interesting or unique, or first person accounts which are useful but vary so widely because DID presentation and internal originization is unique to each person.
posted by AlexiaSky at 3:06 AM on April 3, 2019
Book by Marlene Steinberg was super insightful into how dissociative symtoms impact a wide variety of different areas, and in very different ways. I definately learned more about DID in general from this book than any other source. I also found it approachable but I work in the field so the language is familiar to me already.
It's a good foundation to understanding what symptoms there are outside of the stuff people like to focus on because it's interesting or unique, or first person accounts which are useful but vary so widely because DID presentation and internal originization is unique to each person.
posted by AlexiaSky at 3:06 AM on April 3, 2019
I work at a hospitalization program and I would be wary of any new diagnosis that comes during hospitalization. Many of us who work in this field get annoyed when clients receive new diagnoses when inpatient. For starters, diagnosing someone in crisis (who already has 4 different diagnoses) is not a great idea. You're not getting the whole picture of the client--you're getting a very limited snapshot. It's unfair to create a whole new diagnosis based on behaviors presented during a crisis.
Additionally, your kid is already diagnosed with autism, bipolar, PTSD and BPD? What I would say is keep sticking with the behaviors and deal with those. I honestly would not spend one more minute researching another diagnosis (and I would not be 100% confident with the diagnoses they already have).
In my program, we suggest that families and clients take diagnoses made during hospitalization with a huge grain of salt. Instead, continue outpatient therapy and work with people who already know the client. Get their input.
You seem like you're really on top of all of everything, and I wouldn't just yet go into a rabbit hole based on this.
posted by yes I said yes I will Yes at 4:13 AM on April 3, 2019 [21 favorites]
Additionally, your kid is already diagnosed with autism, bipolar, PTSD and BPD? What I would say is keep sticking with the behaviors and deal with those. I honestly would not spend one more minute researching another diagnosis (and I would not be 100% confident with the diagnoses they already have).
In my program, we suggest that families and clients take diagnoses made during hospitalization with a huge grain of salt. Instead, continue outpatient therapy and work with people who already know the client. Get their input.
You seem like you're really on top of all of everything, and I wouldn't just yet go into a rabbit hole based on this.
posted by yes I said yes I will Yes at 4:13 AM on April 3, 2019 [21 favorites]
I agree with everything Rush-That-Speaks wrote, up to and including the long-term prospects.
I also agree with the idea that diagnoses in-hospital are more of a possibility than a fact overall, but multiples commonly are diagnosed with a few of the things you mentioned, in part because different people fronting does end up looking like bi-polar, and a non-selves-aware multiple sometimes will present with a lot of BPD-like behaviour for various reasons. However you slice it it sounds like like your adult child is suffering and exploring this possibility isn't necessarily going to be a bad thing.
I have been asked a few times what few things are the most helpful for people to understand about being multiple and my relatively short version is the following:
- treating each person in a system as a person deserving of respect is key. Even if it turns out not to be the case, modelling how you behave towards people respecting their right to self-define and to be treated with dignity and care is a good thing.
- assume the best potential in each individual member of a system. A long time ago one of the members of my system was posting all kind of super-goth dark poetry all over the 'net about her own psychopathy and yesterday was talking to one of her nearest and dearest about the relative merits of the first and second Lego movies for kids of particular ages. One thing that most multiples have kept more intact than their similarly-aged peers is a potential to grow.
- don't get too freaked out; the people you know are still there. In the moments that things seem the strangest, that's probably when the most trust going on. It takes a lot of energy and effort and belief for someone that's been hiding their experience of living their entire life to reveal that, so if someone arrives and states they are a sparkly unicorn, run with it.
- there will be moments that things look on the surface like they are going completely backwards. I often share this example in my own experience...up until I was over 25, I had never apologized for anything in my life.
By that I do not mean anything like someone who was made to apologize as a child and gave grudging half-nods to friends and only learned to feel a sincere apology as an adult would mean making a similar statement. I mean that in my interior, human-brain experience, my entire set of memories not only started much later than little kids start learning about sorry, but that my experience of friendship was "you have a fight you barely understand" (because I was "the angry one"), then in some unknown quantity of time, suddenly, you are friends again. So I thought a common pattern of friendship was "you have bitter arguments you barely understand and then everyone cools down and is over it."
But really, there was another person in the system whose job was to be very good at apologizing, emotional repair, being thoughtful about being a good friend, etc., and I just had no personal memory of the work that she did. So my entire understanding of friendship, while based on real-life learning that I did in the usual way, like, doing it, was completely whack. If a normal person absorbs 20 hours of apology-related activities by age 18, I had absorbed maybe 10 minutes.
Once I understood that, I did have a way to connect with that other person's experience and I came up to speed pretty quickly. But if you consider that kind of gap, then if indeed you are dealing with a system, you'll see why as a parent, you may have to go over things you think are givens.
Good news is, I've almost never met a multiple who couldn't come up to speed fairly quickly about factual/social stuff, because our entire existence as halfway-functional people more-or-less depends on being able to process that kind of information quickly. (Feeling things, maybe less so.)
Anyways, some further resources:
101-type stuff includes
Amongst Ourselves - a bit hard to find but a good primer
Despite the horrific cover, Robert B. Oxnam's A Fractured Mind is the best memoir I can recommend to an adult reader.
More in-depth stuff:
The opening chapters of Jekyll On Trial lays out some of the best thinking about personhood and dissociation that I've read (I will admit that my reading list ends about a decade ago.)
I would avoid When Rabbit Howls, Sybill, anything that is written by a therapist about a single multiple system or their heroic battle against Satanism (eyeroll) and most of the abuse memoirs with the possible exceptions of The Magic Daughter, only because I think that is about the first sensibly self-written memoir, and First Person Plural by Cameron West, which was a watershed because he did not really have "the magic therapist that fixes everything."
I could write a long essay about online multiple communities as I was in some of the first and have observed on and off from afar but...I think the main thing is just let your child/ren explore and stuff and feel free but be aware that the most visible multiples (like LB Lee) are often at a particular phase in their own selves-exploration -- the period of time when they are delighting and discovering themselves, generally in their 20s, with all the rush of enthusiasm that involves. There are many many multiples not waving the flag who are also doing great.
posted by warriorqueen at 5:25 AM on April 3, 2019 [22 favorites]
I also agree with the idea that diagnoses in-hospital are more of a possibility than a fact overall, but multiples commonly are diagnosed with a few of the things you mentioned, in part because different people fronting does end up looking like bi-polar, and a non-selves-aware multiple sometimes will present with a lot of BPD-like behaviour for various reasons. However you slice it it sounds like like your adult child is suffering and exploring this possibility isn't necessarily going to be a bad thing.
I have been asked a few times what few things are the most helpful for people to understand about being multiple and my relatively short version is the following:
- treating each person in a system as a person deserving of respect is key. Even if it turns out not to be the case, modelling how you behave towards people respecting their right to self-define and to be treated with dignity and care is a good thing.
- assume the best potential in each individual member of a system. A long time ago one of the members of my system was posting all kind of super-goth dark poetry all over the 'net about her own psychopathy and yesterday was talking to one of her nearest and dearest about the relative merits of the first and second Lego movies for kids of particular ages. One thing that most multiples have kept more intact than their similarly-aged peers is a potential to grow.
- don't get too freaked out; the people you know are still there. In the moments that things seem the strangest, that's probably when the most trust going on. It takes a lot of energy and effort and belief for someone that's been hiding their experience of living their entire life to reveal that, so if someone arrives and states they are a sparkly unicorn, run with it.
- there will be moments that things look on the surface like they are going completely backwards. I often share this example in my own experience...up until I was over 25, I had never apologized for anything in my life.
By that I do not mean anything like someone who was made to apologize as a child and gave grudging half-nods to friends and only learned to feel a sincere apology as an adult would mean making a similar statement. I mean that in my interior, human-brain experience, my entire set of memories not only started much later than little kids start learning about sorry, but that my experience of friendship was "you have a fight you barely understand" (because I was "the angry one"), then in some unknown quantity of time, suddenly, you are friends again. So I thought a common pattern of friendship was "you have bitter arguments you barely understand and then everyone cools down and is over it."
But really, there was another person in the system whose job was to be very good at apologizing, emotional repair, being thoughtful about being a good friend, etc., and I just had no personal memory of the work that she did. So my entire understanding of friendship, while based on real-life learning that I did in the usual way, like, doing it, was completely whack. If a normal person absorbs 20 hours of apology-related activities by age 18, I had absorbed maybe 10 minutes.
Once I understood that, I did have a way to connect with that other person's experience and I came up to speed pretty quickly. But if you consider that kind of gap, then if indeed you are dealing with a system, you'll see why as a parent, you may have to go over things you think are givens.
Good news is, I've almost never met a multiple who couldn't come up to speed fairly quickly about factual/social stuff, because our entire existence as halfway-functional people more-or-less depends on being able to process that kind of information quickly. (Feeling things, maybe less so.)
Anyways, some further resources:
101-type stuff includes
Amongst Ourselves - a bit hard to find but a good primer
Despite the horrific cover, Robert B. Oxnam's A Fractured Mind is the best memoir I can recommend to an adult reader.
More in-depth stuff:
The opening chapters of Jekyll On Trial lays out some of the best thinking about personhood and dissociation that I've read (I will admit that my reading list ends about a decade ago.)
I would avoid When Rabbit Howls, Sybill, anything that is written by a therapist about a single multiple system or their heroic battle against Satanism (eyeroll) and most of the abuse memoirs with the possible exceptions of The Magic Daughter, only because I think that is about the first sensibly self-written memoir, and First Person Plural by Cameron West, which was a watershed because he did not really have "the magic therapist that fixes everything."
I could write a long essay about online multiple communities as I was in some of the first and have observed on and off from afar but...I think the main thing is just let your child/ren explore and stuff and feel free but be aware that the most visible multiples (like LB Lee) are often at a particular phase in their own selves-exploration -- the period of time when they are delighting and discovering themselves, generally in their 20s, with all the rush of enthusiasm that involves. There are many many multiples not waving the flag who are also doing great.
posted by warriorqueen at 5:25 AM on April 3, 2019 [22 favorites]
Response by poster: This is the most consistently helpful set of answers I have ever gotten to an AskMe question. Thank you all.
posted by Orlop at 6:05 AM on April 3, 2019 [13 favorites]
posted by Orlop at 6:05 AM on April 3, 2019 [13 favorites]
So... I'm female and on the spectrum, with a long diagnosis history like above, and mid-twenties was about the time all of the masking I did as a teen stopped working. The scripts that I followed earned me a "you exhibit the closest thing to DID" by a professional who didn't believe in the condition.
I found this halarious because I was dating someone who actually had the condition. It's real, and functions differently in the brain from what I did, but I could see how on the surface mental health professionals unfamiliar with autism/ADHD/gender might mistake it as such. Obviously, there's no way for me (or anyone?) to know the validity of your kids diagnosis.
Also, I can't offer much by way of advice, because for me, interacting with a multiple was pretty much the same as interacting with anyone else. Be kind, listen, figure out the context, confirm it (this helped both of is), interact consistent with the current environment, and move forward.
No clue if this helps, but feel free to memail me if you'd like.
posted by bindr at 7:04 AM on April 3, 2019 [2 favorites]
I found this halarious because I was dating someone who actually had the condition. It's real, and functions differently in the brain from what I did, but I could see how on the surface mental health professionals unfamiliar with autism/ADHD/gender might mistake it as such. Obviously, there's no way for me (or anyone?) to know the validity of your kids diagnosis.
Also, I can't offer much by way of advice, because for me, interacting with a multiple was pretty much the same as interacting with anyone else. Be kind, listen, figure out the context, confirm it (this helped both of is), interact consistent with the current environment, and move forward.
No clue if this helps, but feel free to memail me if you'd like.
posted by bindr at 7:04 AM on April 3, 2019 [2 favorites]
LB's old-ish site Healthy Multiplicity has a bunch of resources.
Irenes (link is to their Twitter, they're an SWE at Google) somewhat regularly post plural/multiple resources, though I think they used to have a personal website somewhere with more stuff.
If your kid is somewhere on the plural-ish spectrum and not unambiguously multiple, the therapeutic framework Internal Family Systems (wikipedia link) might be beneficial.
posted by bagel at 11:13 AM on April 3, 2019 [1 favorite]
Irenes (link is to their Twitter, they're an SWE at Google) somewhat regularly post plural/multiple resources, though I think they used to have a personal website somewhere with more stuff.
If your kid is somewhere on the plural-ish spectrum and not unambiguously multiple, the therapeutic framework Internal Family Systems (wikipedia link) might be beneficial.
posted by bagel at 11:13 AM on April 3, 2019 [1 favorite]
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Do not expect them to want to integrate into one personality. Should they wish to integrate and attempt to, do not expect it to work on any kind of permanent basis. Therapy should be focused towards increasing communication between system members and working on the problems they have as individuals and any issues they have with one another. A therapist who tries to integrate them forcefully can do a lot of harm.
Terminology: the person/people who are in control of the body are generally referred to as being in front. Sometimes, it is possible for a system to have multiple people in front at the same time, either one controlling and the others observing, or each controlling certain aspects. This is called copresence. The degree of copresence that is possible or desirable is individual to each system.
There are many different terms for a system member-- headmate, alter, personality, and, well, system member. Go with whatever terms your child winds up using, as it is possible for unchosen terms to be very offensive. (Alter, for example, is not an okay word with/for me, for idiosyncratic reasons, but I know folks who are fine with it.)
System members probably have individual names, or will acquire them when they become fully aware of themselves as part of a system. Some may tell you their names, and want you to know when they are around and with whom you are specifically interacting. Some may not and will not. Refusal to give a name or indicate presence is generally due to trauma and should be respected.
Multiplicity, in every instance of it I have ever encountered, including my own, comes from extremely severe trauma at a very early age. It is quite possible that previous attempts to work with/alleviate the PTSD have failed because the helpers were not working with the whole system. Also, because the trauma would have been early in life, there are almost certainly-- I have never met a system without-- personalities who are children, who stopped at a traumatic point and simply never grew any older. Taking care of the kids is going to need to be a major priority for your child and for their therapists.
Do not worry too much about how this diagnosis will affect your child's long-term prospects. I am literally at the top of my field, worldwide; I am a parent, happily married, and really damn functional considering the details of my early childhood. I also have DID and C-PTSD, and neither of those are going away, and that's fine. At twenty-four, I was wavering on the edge of inpatient treatment, unemployed, flailing, and had very little idea what was going on with me or what to do about it.
If you have any questions, feel free to Memail me.
posted by Rush-That-Speaks at 8:58 PM on April 2, 2019 [52 favorites]