Polly's pages (aka 'Donna Williams')

Ever the arty Autie

Myth busting and Dissociative Identity Disorder

January12

DID is Dissociative Identity Disorder. It is a DISSOCIATIVE DISORDER and part of a SPECTRUM of DISSOCIATIVE DISORDERS… so is PTSD (Post Traumatic Stress Disorder) and all human beings dissociate, especially before age 5.

Autistic children dissociate more than most due to chronic stress and information overload. This does not mean they develop DID. It does mean they would be more at risk of dissociative disorders along the spectrum of dissociative disorders such as Derealisation, Depersonalisation and also PTSD. DID is one of the most severe Dissociative Disorders. Hence only those who have experienced severe ongoing trauma usually would develop DID. It is believed that 25% of chronically abused children develop it and that there are predispositions toward dissociation.

Donna Williams

You can find more info at my website http://www.donnawilliams.netincluding my consultation page for DID where I offer online Peer Support.

Cheryl Law
thank you Yes my son used to do it all the time up to about the age of 8 to 10. he is 13 now

Anita Cameron
Thanks! I never knew that PTSD was on that spectrum of dissociative disorders. I have PTSD from childhood abuse.

Caz Lane
There was a film shown in 3 parts over here years ago called Sybil based on a real case. She had 26 different personalities as a result of horrific abuse at the hands of her own mother throughout her childhood. I highly recommend it but have some kleenex handy! There is also the book ‘When Rabbit Howls’ which is essential reading if you want to gain an insight into the condition-the lady who wrote it had no less than 96 personalities at time of writing the book!

Donna Williams
Yes, the one with 96 alters would have had Polyfragmented DID… which is more complex and further along the spectrum of dissociative disorders than DID and DID is further along the spectrum than DD Nos, which is further along than PTSD. Sybil, by contrast had DID, or at least today she’d be dx’d with DID. In real life, the real Sybil in fact passed for any other person you might meet. The rest was Hollywood.
http://www.youtube.com/watch?v=jhiBq8QqetY
http://www.youtube.com/watch?v=S4RfbTRqh54&feature=related

Tara, in United States of Tara, is an example of a simple case of DID… 6 alters (the minimum for dx is 3, the average is 10)… one form of abuse (sexual) over a limited time versus those dealing with multiple forms of abuse and multiple …abusers over 0-15 years. Tara and Sybil are also examples of people with DID who did not have developmental disabilities. There are those dx’d with autism who have been dx’d with DID. DID in someone with autism will present differently as it might in someone without developmental disabilities.

Alyson Bradley AsPlanet
If someone had say PTSD and/or DID etc.. I presume those differences may not always apply, as they recover from trauma etc… or will in part some aspects stay with them or does it depend on varied factors. I think I am answering myself πŸ™‚

Donna Williams
Hi Alyson, people do recover fairly well from some dissociative disorders along the SPECTRUM of dissociative disorders… so people recover from derealisation, depersonalisation, PTSD takes longer, then DD Nos may take longer, DID takes around 4 years of therapy to recover depending on the severity/complexity, Polyfragmented DID is the most severe along the spectrum of dissociative disorders.

People can dissociate without it having developed into a dissociative disorder… perhaps just as people can be autistic – a developmental ‘disorder’ along a SPECTRUM of developmental ‘disorders’ without it being at a level where its a disorder.

DID used to be called MPD and was mistakenly presumed to be a personality disorder but its a dissociative disorder along a spectrum of dissociative disorders. BPD (a personality disorder) is commonly mistaken for DID. Those with BPD are more prone to dissociation than those with other personality disorders but most with BPD do not have DID and most with DID in fact don’t have BPD, though there are some with both – confusing!

Most people with DID do not appear particularly psychotic, nor are they dangerous. Those with both DID and BPD are more likely to be self injurious than those with DID who do not also have BPD. So the stereotypes of self harm, violence etc don’t apply to all with DID. Interestingly, in this study BPD has only a 53% crossover with DID but AvPD has a 76% crossover and Self Defeating PD (the extreme of the self sacrificing personality trait) has a 68% crossover…. so shy self sacrificers may be more prone to DID than Borderlines. Could this mean that those on the autism spectrum who tend towards AvPD and dissociation, if subjected to ongoing trauma, could have a higher incidence of dissociative disorders including PTSD, DDnos and if the trauma was severe and ongoing enough, DID?

Carmel Anne Jones
It seems hard to believe somebody would have 96 different personalities…

Donna Williams
Carmel, it does occur in polyfragmented DID… for example, to give you some idea of the process without being too graphic, an alter develops when a child faces unbearable loss, neglect, trauma including emotional, physical, sexual abuse, w…itnessing domestic violence, witnessing animals being tortured, imprisonment etc. Some experience one form, chronically, others for example living with a mentally ill, substance abusing psychopathic carer, may experience all levels. I was not polyfragmented… as best I can tell I have 8 + 3 animal alters – so 11 alters. But when I was about 12 one of my alters began to create ‘Donna Now’… she kept creating new ones with every new abuse… this was the start of polyfragmented DID. We didn’t progress into that as those with 100 or 1000 selves, but can you imagine daily abuse and the only way you can stop from walking in front of a car to end it is to dissociate each day or week into a new, untainted alter… that’s how it happens. But without those who experienced these processes talking about it, DID and Polyfragmented DID will seem just too bizarre for some to get to grips with.

Alyson Bradley AsPlanet
I do have BPD (type1) and probably had PTSD, I did detach myself from situations as a child to cope, memory wise there are chunks of my life I seem to of lost, but not sure I had DID, I would act differently depending on different people, a…ll to confusing for me, I just did a quick test and seem to be high on so many things, maybe crazier than I thought πŸ™‚ but all good because happy with who I am these days, and no longer impact on others mostly, well like everyone, there will always be the odd person. But many things on the basic test under personality disorder with a whole sub list with that seem to relate to bipolar and aspergers, I some how feel there is an interconnect with many disorders, or maybe the labels get changed over time!

Donna Williams
Those with Borderline generally have had more experience of derealisation and depersonalisation (parts of the spectrum of dissociative disorders) than most people might. It would also mean you probably had PTSD which is how someone with the Mercurial trait might escalate into Borderline (the personality disorder associated with the Mercurial trait). Those with Borderline do experience amnesic episodes just like those with DID. One of the main differences is that in Borderline the person takes on roles, in DID the person has dissociated into alters. As you said you would ACT differently… where with DID you ARE a different person, you’re not acting. Also with Borderline these are roles, they’re more 2D, archetypal, stereotypes. With DID these are more complex, whole identities with their own full histories, perspectives, tastes etc. Also the emotional instability in Borderline can be more extreme than in those with just DID even though the switching and fragmentation would be more extreme in DID, Borderline and Rapid Cycling Bipolar are hard to tell apart, just as DID and Bipolar are hard to tell apart (and many kids with autism are getting dx’d with co-morbid bipolar). Having AS would have meant your chronic anxiety levels would have been higher than most children due to information processing issues.

Alyson Bradley AsPlanet
To clarify for those that do not know I have Bipolar (type 1) apart from other diagnosis and who knows what else, but guess we all have many differences. Anyway my head is spinning, maybe I will sleep for a change, good night everyone πŸ™‚

Donna Williams
Ah… THAT BPD, Bipolar, not Borderline… sorry… well I went for my medication review for bipolar and that’s when I was dx’d with DID!

Billie Rain
I really liked the way “Sybil” showed her internal world. there’s a great book called “united we stand” by eliana gil that explains DID in a simple and direct way. I’m polyfragmented, and the experiences I had as a child were pretty horrific.
thanks for speaking out, Donna.

Donna Williams
Hi Billie, it was REALLY hard for me this week facing up to having 3 animal alters. Polly started out knowing of 3 alters – her, Willie, Carol, though she thought she was the Core Self (until I arrived after 44 years). By the time we were dx’d with DID in 2010, we knew of 4 but found it hard to slowly face up to the other 4, arriving at 8. Accepting the 3 animals made 11… but facing having animal alters was so scary, even though we knew we’d been a rabbit at age 9, a cat all our lives, also been a bear. Even scarier was remembering when one of us started creating all the ‘Donna Nows’ and the level of things to reach the point this was the only way to not kill ourselves… the memories were so hard to live with, the reality of it all so overwhelming, Marnie desperately wanted to kill the body to rid all the memories, to stop all the PTSD, flashbacks, to never have to go back, to get all the horror out, no more nightmares or shaking, no more entrapment in silence (especially with communication disorders). I’m glad I didn’t become polyfragmented… it’d have been even messier for me re therapy… 11 is hard enough to work with! But I’m glad I had a window to understand the corner I almost turned which divides DID from polyfragmented DID.

One thing that really distresses me in the autism world is that the horrors I lived with re abuse and DID, once in the autism world I was told not to talk about alters, I was encouraged to talk of them as ‘characters’, and in public speaking I was encouraged to avoid mention of any of ‘that stuff’…. its like being silenced when I was already severely abused as someone without functional speech until 9-11 and even then only litanies until 13, then combinations of echolalia, stored speech, Donna-speak, Schizotypal poetry-speak, so until I went to university (and got academia-speak) I couldn’t make myself easily understood… so you can imagine how traumatising and confusing it was to suddenly find people being kind to me but subtly controlling my voice, wanting me to remain silent about a condition that effected me as much as my autism, its like being ripped in half, a world that accepts half of you, finds the other half filthy, contaminating, unmentionable. I’m allowed to talk about primary immune deficiencies (even those I was made to shut up by those who didn’t want to hear THAT side of autism because it didn’t apply to ALL) but not about DID. Yet many with autism had experienced other dissociative disorders – derealisation, depersonalisation, PTSD, even DD Nos, but it was just way too taboo.

Maria ‘Ria’ Strong
And probably in the DID world encouraged not to talk about autism.
Had a friend who used to teach at TAFE. She invited people from mental health consumer org in to guest lecture. They started “we may have had mental health problems, but we’re not stupid”. Next week, she brought in people from self-advocacy org for (mostly) people with an intellectual disability. They started “we might be slow learners, but we’re not crazy”. A few years after that, was in a workshop at an ABI/TBI conference. Question, what do you want people to know about ABI/TBI?. Immediate and more or less unanimous answer, “we’re not stupid, we’re not crazy”. Sigh.

Donna Williams
oh Ria, that’s hilarious, and tragic. So far I haven’t had the DID world detest me for having autism though its funny, those who aren’t autistic sometimes have EMOTIONALLY autistic or Selectively Mute withdrawn alters they refer to as ‘aut…istic’. On the internet there’s haters who pity me for being mentally ill (go figure) and portray me as having only one alter who was ever autistic… er… well in fact all my alters would have been dx’d on the autism spectrum… just some more likely with PDD Nos, some with ‘moderate autism’, some as ‘severely autistic’, some with ‘atypical autism’ and Willie (once she had functional speech by age 11 and litanies by 13 as having Aspergers…. as for the animal alters… well…

Love Sanchez-Suarez
for me, the topic of DID does scare me, i have to admit, although i don’t know you personally, i felt like i knew you a little through your music as one autistic person and now to find out you are really several persons, it was a bit discon…certing. also i don’t know what to think of it, whether it really is a coping mechanism as mainstream psychiatry says, or all those other people are really there like that other system (i mentioned in previous post comments) says. i mean i guess if things are going along and a person is living with themselves ok, maybe it doesn’t matter? Also yeah there is that “we’re autistic, not crazy” feeling. but what about being both?! a lot of the way autistics get treated could make anybody crazy. also there are all those other life experiences that may not have to do with who we are, but just things that could happen to anybody… in fact i am sort of trying to get a dx and the shrink wondered if i was really Asperger, or just had been raised by crazy people (not her words, of course, but general idea) and i said, why not both?! she didn’t know a lot of my social difficulties and processing differences, because she hadn’t seen them yet.

Donna Williams
Hi Love, yes, it is disconcerting to some Singletons when they realise someone is a multiple… it is… well which ONE did I know. So if you knew me through Nobody Nowhere, you’ve met Willie, met Carol and the others would have been in there in the writing or in moments of the writing and primarily I was the typist, the conduit, in a sense ‘channeling’ them as they told what they remembered as they remembered it. Remember how the styles shift suddenly all over the place in Nobody Nowhere? Some parts quite clinical, others just silly, others meandering, others sudden short sharp shocks….. well these were the styles and memories of different alters… split off parts of the Core Self, of me, except I was still in a dissociated, traumatised, sort of sleep walking state.

Then with the music, you’d have met several… Carol was the singer on the first two albums, but there are several of us on the Broken Biscuit album. Several of us write music and lyrics… some (like Anne) write poetry which others have converted. Some write classical music (like Willie) which others have converted into songs. Carol writes ballads like Beautiful Behavioural Mutations, Da writes surrealist silliness like All of You, Marnie probably wrote All Be Happy. Willie does the lectures, Da the characterisations during the lectures. Addie, Willie and Da take questions. Addie and Anne both run the book stall afterwards. So you have met most of us. All people, even Singletons, are rarely a fully cohesive whole. That’s why DID is a spectrum. Then there is the Core Self, which is like a basket that contains all the alters. That Core Self was split from the body for 44 years but it would still type and sometimes you could see it staring as if blind, not moving, sort of looking like someone in a Petit Mal seizure I expect.

Ruth Elaine Hane
Donna, we met years ago in Milwaukee, Wisconsin when you were an anomaly. You spoke about autism and shed light on my own journey, then, as you are today, by sharing personal information. I admire your courage and pluck. I called my overl…oad-shutdown place my “Nothing Place” I preferred it to facing my abusive father, I thought nothing could hurt me when I hid inside. I too, have been cautioned not to tell about my abuse and coping strategies. I resonate to the thread about functioning too well to be autistic. I return the you gave to me in Milwaukee: “Be strong, have courage!”

Donna Williams
Hi Ruth, wonderful for you to find belonging here. Thank you for speaking out.

Natasha Delgarno
Yes what an interesting thread, thanks everyone for your contributions and Donna you are amazing. I read a book last year on DID called “A Life in Pieces” by Richard K Baer, I could hardly put it down and it left me with such respect for the healing process.

Randy Klein
A man is defined by the sum of all of his parts.

Donna Williams
Randy, I agree!

Love Sanchez-Suarez
i have read at least one autistic “multiple system” who doesn’t think DID is a disorder, they think they are several souls coexisting in one body. they think it’s real. is there anything wrong with that view, in your opinion? Not sure if it matters that this system (or some of them anyway) are autistic, but that’s how i came to read them was through the online autistic community… so i mentioned it for that reason.

Donna Williams
Hi Love, just as in the autism and deaf communities there are those who see their conditions as ‘differences’ and those who see them as disabilities or disorders, the same is true in DID. I see MY DID as both a difference, a disability and… a disorder BUT I see it as a disorder in the sense of it being an imbalance, an extreme that is too large to easily manage… so in the same way that OCPD (Obsessive Compulsive Personality Disorder) is common in Aspergers but only some with it will find it too imbalanced or extreme to easily manage… others will feel its ok with them, even if overwhelming to others, or sometimes to themselves.

Devlyn Rhys Young
as DID (my preference is MPD) occurs as a coping mechanism, it unfolds upon whatever other personality traits a person is born with (like OCD, BPD, depression, etc)…it also unfolds upon those with autism. i have read that those with auti…sm and MPD can come to manage it best, because of the pattern-solving, puzzle-organizing type of mind they have. my ability to mimic and script well – and read others’ expectations- had/has me functioning quite highly although quite weird in many ways. b/c autism is on a spectrum, i had several alters who functioned way less autistic, so that i could teach, counsel, and live appropriately (mostly) in the world. each of my inner peeps sees themselves as real, complete humans in and of themselves, just wanting healing, friendship, and a way to interact cohesively and coherently within the one who people see as the presenting adult

Donna Williams
Hi Devlyn, I agree I’ve made a great DID patient as many of my selves have incredible problem solving skills I feel I wouldn’t have if not autistic. For example, Polly can use stones, sticks etc to externally mentalise, just as people did in the stone age… she can map out her feelings on the floor showing relationships between things. Da is a surrealist and systematician and came up with amazing ‘integration maps’ to weekly track our progress – awesome! Willie is a list maker and researcher of OCPD proportions. The cat alter, Ning, has an ability to scan each room we’ve ever been in and feel out the trauma spaces and the safe and sacred spaces. Anne paints the faceless works and keeps an art journal that tracks the process and dilemmas and lost memories in the system.

As for MPD it is a dissociative disorder (or difference if you like) not a personality disorder (just as depression/bipolar are not personality disorders, they are mood disorders, and OCD is a compulsive disorder, but OCPD or Borderline are personality disorders). So its really the P in there that is an anomaly. Although in DID each self has its own rehash of the personality traits the Core Self was capable of, what each alter takes is still part of that original mix of traits, so in a sense there IS one personality, just the alters have their own distinct rehashes… like a DJ doing a remix… its still made from the original materials. Perhaps something like DMID – as “Dissociative (and) Multiple Identity Disorder” would be most fitting which would keep the multiplicity but stop feeding the confusion re a Dissociative Disorder versus a personality disorder. As you know, those with DID are not personality disordered. Their alters don’t necessarily have any personality disorders at all (though they can).

MPD was never seen as part of a spectrum. As such people could never imagine THEIR place along the milder ends of the dissociative spectrum. DID is known as a spectrum disorder within the spectrum of dissociative disorders. It helps people understand the comprehensibility and validity of the condition.

Devlyn Rhys Young
oh, is that what they meant by DID; i couldn’t grasp it because it didn’t fit me. also, all what you said to me in the previous note is so right on with what i’ve experienced; too awesome… i mean that in a good way… i know there are many times it is not awesome, but – for me – to know someone who works similar to me, way cool. the spectrum itself seems genetic somewhat with my mom and daughters, but nobody is mpd like me… and i like the cat alter: maybe that’s why i can shapeshift as a shaman easily… curiouser and curiouser. stay dry and safe.

Donna Williams
Hmm, Da is amazing at characterisations, Carol is/was a chronic pleaser, Anne struggled to be more than a ghost with a body, I struggled to stay in much more than the fingers, feet and eyes, but none of us shape shift. The cat is always a… cat, the rabbit always a rabbit, the bear only ever a bear, so they don’t shape shift. Willie is fairly archetypal Aspie so no shape shifting there. Marnie neither. Rose neither. Addie neither. But helpers, therapists, troubleshooters… yeah, we got them. So no shamans here but Da, Addie, Willie are all good as therapists. Anne is good too… if its with silent people and via arts. Carol and Da are lovely as play therapists. Marnie’s ever ready with a healthy dose of reality. Polly isn’t shamanic but she’s very cool with using objects in external mentalising and she creates symbols for everyone.

Randy Klein
Then there is the argument of integration. Some are for it and some are against it. The point of comfort arrives when a choice is made. Regardless of what the decision is.

Donna Williams
Hi Randy, I have a friend with DID who is not autistic. Her DID came about in late childhood where mine began around age 2-3. Her alters don’t have early childhood histories, most of mine did and those that couldn’t remember before age 10 then did remember back to ages 4, 3, sometimes 2. Her Core Self remained present all her life. Mine was in shock and dissociated – what we think of as ‘asleep’, some people feel theirs got ‘killed’… essentially my Core Self thought it was a ghost. So her system didn’t want integration as they didn’t feel anything was missing. But mine wanted a sense of home (the Core Self to wake up), wanted to find their relatedness to each other, some wanted each other as friends, siblings, carers. So my system was naturally inclined toward integration. This is not to say some didn’t get exiled or exile themselves along the way. But now all are accepted for who each is and their importance in terms of past, present and future to the system as a functioning whole.

Alexei Maxim
I am very disturbed that people with DID and Borderline (BPD) (which I believe is the precursor to DID) are seen as somehow inhuman, mentally. DID and BPD are the natural human reactions to trauma, in my opinion. Would you agree, Donna? The more trauma experienced, the deeper the reaction goes, until it moves from an anxiety disorder, into BPD and then further into DID. I am trying to write a novel that will make people see these ‘disorders’ are natural human reactions to too much trauma and so I appreciate your view on it Donna. I am enjoying reading your myth-busting sessions.

Donna Williams
Hi Alexei, DID doesn’t progress into BPD and most with DID don’t have BPD (the two used to be confused but are now differentiated). Many with BPD do not develop DID but DO have dissociative disorders such as derealisation, depersonalisation and if subjected to trauma may be more predisposed to PTSD and further to DD Nos. If they experienced the same severity of trauma that causes DID, someone with BPD could develop DID in addition to their BPD. But generally they find most with BPD over indulge in fantasy and compulsively disappear into roles and those with DID compulsively dissociate into more 3D, fully developed and more complex alters. Saying that, one can certainly have both.

Also BPD (Borderline) is a PERSONALITY DISORDER which has DISSOCIATIVE FEATURES as opposed to a DISSOCIATIVE DISORDER. As such those with BPD are more prone to dissociative disorders along the SPECTRUM of dissociative disorders but BPD is not listed as a dissociative disorder. It is listed as a personality disorder. Where DID is listed as a dissociative disorder along the spectrum of dissociative disorders. BPD is also not an anxiety disorder. Though ANY personality disorder gets from a personality trait into being a personality disorder VIA chronic stress… unless one has two parents with the same personality trait and got a double whammy of it. Similarly OCD and Tourette’s are COMPULSIVE DISORDERS and Depression and Bipolar are MOOD DISORDERS and AUTISM is a DEVELOPMENTAL DISORDER (or difference) and ANXIETY added to any of these will exacerbate them. Hope that clarifies your important question.

Alexei Maxim
Thank you Donna for your elucidations about BPD and DID. I had thought DID was also a ‘personality disorder’. It is helpful for me to visualize the SPECTRUM of dissociative disorders and to realize that BPD affects how prone a person may be to develop something on this spectrum. I will study your opinion more. I thank you for helping me to understand this! It is a subject that I think people need to be educated on(including me).

Ruth Elaine Hane
Dear Donna, I’m sad that you were sensored, however had you exposed too much information before you were accepted as autistic, no one would have listened. I love your analogy of a basketball, you have a great team! After reading Nobody Nowhere, I read most of your other books. I feel an affinity to each of you, and all of you, since I was split until I had intense group therapy in my 40s. Looking back, I commend and embrace my survivor self for creating new people to carry on and not collapse into a deep depression like my older sister did.

Isabelle Monod
thanks Donna & everyone on this link for your honesty ! it’s so painful to hear that when one has gotten the ability to “talk” in a “significant language” ,one is immediately told to shut up, on subjects that don’t “”fit” what has been”decided” to fit !!! this is real abuse!

Jane Waterman
I’m having a hard week this week – memory and stuff, but i just wanted to say thank you Donna for furthering awareness that people with DID are not psychotic and not always mentally ill. There’s a very good book i just read called “five farewells” by Liz Elliot, about a girl growing up in the south with abuse and well just not about her DID so much as about having trouble relating to the world, and relating through objects and well i saw ourselves all over it. She felt a part of nature and light and water and stuff, well, we really related to that part too. Some of our people are more energy than anything – perhaps a moot point when you only have one body and many souls, but it kinda makes sense that we are entranced by different forms of energy when trying to relate to the world. The abuse stuff is hard to read, but i think you will really get a lot out of it. she talks about being mostly integrated now, but i really get the impression that all her selves are still there, they just overlap more now. I’ve known some multiples with animal alters. Donna it’s not something to be scared about.

Donna Williams
Jane, you are an angel… of course maybe one of your alters IS! Anne thought she was an angel/ghost/cat spirit. She’s now differentiated from Ning (the cat) so at least she’s freer to talk now. She’s still coming to terms with being human.

Donna Williams
Some great videos where the non-DID partner is being interviewed by the partner with DID.
http://www.youtube.com/watch?v=N_1zsU03tX4&feature=related
http://www.youtube.com/watch?v=dkwQoKR7qVA&feature=related

More DID mythbusting here. I also have a peer support service for people with dissociative disorders.

Donna Williams *)
author, artist, singer-songwriter, screenwriter.

Ever the arty Autie.
http://www.donnawilliams.net
http://www.myspace.com/donnaandtheaspinauts
http://www.auties.org