I heard from Sarah Smith (et al), a woman diagnosed with Dissociative Identity disorder. Having a diagnosis of both autism and DID myself, I invited her to interview me on the topic. Here’s our interview:

SARAH SMITH (et al)
I am diagnosed with Dissociative Identity Disorder, Not Otherwise Specified and Major Depressive Disorder. When I was reading your books, I very much related to some of your descriptions of how your senses interpreted your surroundings. But I did not have those sensory experiences while grounded, only while in what I describe as an “in-between” state – deeply emotionally distressed and not clearly one alter or the other. Do you always have intense sensory experiences or do they fluctuate with your emotional state?

DONNA WILLIAMS (et al)
That’s a great question! I was ill with Primary Immune Deficiency issues since 6 mths old so I didn’t develop properly. Part of that meant I couldn’t see a face or body as a whole – simultagnosia, and associated face blindness. I heard blah as people entertaining themselves with noise patterns and was still about 90% meaning deaf by age 9, so that stuff was fairly consistent. I don’t remember ever seeing people or rooms as a whole or understanding blah with meaning before age 9 except for the occasional phrase and a range of individual words. I always had difficulty experiencing my body as whole, visually or physically. But after age 9-11 I became only 50% meaning deaf and less object blind. That’s where the different selves developed differently.

So my splitting began around age 2 but perceptually we were the same, just emotionally and in self concept we were very different. But around age 9-11 we were functionally different yet each still ‘autistic’ just differently so. So the echolalic ones – like Da and Carol and Marnie became more elaborate in that echolalia… whole TV shows and Marnie swearing. Willie was among the most overtly Schizoid so had never been echolalic, was silent. But it was Willie who tried desperately at 9-11 to string words into sentences which lead to klunky but functional verbal speech by 11. And others like Anne and Addie struggled to use that speech due to selective mutism. And Polly remained largely non-verbal, using gestural signing and objects and Dodds developed typing. So all responded differently.

With co-morbids too, all developed differently. Willie and Addie were caught up in OCD, Addie in GAD, Da in mania, Marnie in rage and Anne, Polly and Carol were the most Schizotypal. And intellectually, as Willie gained 50% receptive language by 11 and was able to do litanies, Willie identified with intellect where Da and Carol shunned it, Marnie focused on self destructing and Anne, Dodds and Polly remained reliant on sensing, not intellect. Also Carol and Da presented as quiet ADHD where those like Anne presented as withdrawn, depressed, AvPD and Polly (when seen outside of the room, as she’d disappear at any sound of people) presented as more LD.

So very different presentations albeit each of them still ‘autistic’ presentations. But re stress and emotion, some where definitely more allergic than others, some, like Addie, Anne, Polly, Carol would definitely have info processing shut down more due to immense anxiety but those like Willie and Marnie seemed to switch on in the face of extreme challenge. We also found that one could be really ill, like have Gastro, then another might present and the Gastro seemed to disappear!

SARAH SMITH (et al)
I am and have always been fairly co-conscious with one of my alters. As my treatment progresses, I find that I can interact with them, albeit this interaction takes place largely in my mind (yet is very very real.) Do you converse with any of your alters?

DONNA WILLIAMS (et al)
We only knew of Willie, Carol and Polly (who we used to called Donna or ‘little Donna’). We didn’t know of the full 9 even though they were named along the way. In other words we ‘forgot’ or ‘left them behind’ or didn’t realise they had developed lives of their own. Even though Polly knew of Willie at age 2, and Carol from age 4, there was no conversing, not verbally. But we could feel each other at times. Like Carol could feel Willie blocking the body, Willie could feel Carol having a meltdown inside. Carol could feel Polly watching her or crying inside. Willie could feel Carol singing to create blocks. Polly could feel Carol ashamed of her. We had fugues in our 20s so found alters were ‘conversing’ through taking the body away from whatever home we lived in. In our 30s we had treatment for PTSD after taking action because alters were walking the body out in front of moving cars, so that was ‘conversing’.

A few years before formal diagnosis of DID this year at 46, we could hear each other singing, crying, screaming, quipping inside. They also communicate with flashbacks and in dreams and through typing, art, music. I think mine were all late to get functional verbal speech so they converse in less verbal ways. They now know more about each other, their histories, traumas, the things they want, need, wish they could get around to, so they’re all now helping meet those wants and needs on their own present time… so if Willie is presenting and knows Addie might need or want something, Willie will get that done, which is just lovely as before it was ‘everyone for themselves’ so lots of frustration!

SARAH SMITH (et al)
I have been co-conscious with one of my alters since I was 12 or so. We have had a rich experience of life for all these years, but I never realized I had a dissociative identity disorder. I knew I was “different” so I kept my experiences secret. When I hear controversial discussions about DID, especially those that claim DID does not exist and is a function of suggestion by a therapist, I start to feel sick as I never even knew about DID (or MPD as it was called) until years after I had a clearly established alter. But I cannot help but wonder how DID has mushroomed in the past years. How do you react to the controversy surrounding the diagnosis of DID?

DONNA WILLIAMS (et al)
Hmm. Well, like you, I knew about three and wrote about them in Nobody Nowhere long before formal diagnosis for it so there’s no way mine can be attributed to therapist suggestion. I feel there’s some lost people who have far worse identity disorders than DID in that they are not content with the identity they have and wish to be more interesting and find DID exotic, especially after things like United States of Tara. Same thing happens in the autism world, people romanticising the condition. But most things are a spectrum, even dissociation, but it churns my stomach that anyone would want to have DID… the nightmares, the PTSD, the disorientation, the shame, the alienation, the inability to plan life or even be sure the shoes you bought won’t be thrown out or given away by next week, not to mention the expense of ongoing therapy.

But I think there’s also a big confusion between those with Borderline Personality Disorder who experience dissociation and depersonalisation and derealisation and have no solid sense of identity, constantly latching onto new identities, and those with plain and simple DID who don’t have Borderline… and of course there’s those with both. So I think there’s those with DID who have strong identities, albeit multiple ones, those with Borderline who identify with DID but may or may not have it, and those with Borderline who also have DID but have very poor sense of self or selves, that their selves are perhaps more ‘imaginary’, more created, more about elves and fairies and angels etc.

So I think this creates issues out there re the perceived validity of DID. Like one could work with someone with Borderline who is identifying with DID and hooked on therapy and coming up with progressively more hundreds and thousands of alters and conclude DID is part of that person’s fantasising and the therapist’s indulgence. Then one might confront a DID patient with unquestionable switching (which can’t be convincingly performed and is remarkable to those who see it) who can’t wait to move on from therapy and works actively to overcome their DID and associated PTSD and co-morbids and that will create a whole other impression for therapists. So until the field can distinguish one group from another there will be those who convince the therapy world one direction or the other.

I also think we’re entering a new era in which attention is currency and DID is one way of being ‘more interesting’ than the norm so that’s going to attract some emotionally imbalanced and socially needy people and fact is they need actual therapy for that but I’d prefer they didn’t mess up the public perception of the validity of the condition in the process.

SARAH SMITH (et al)
I envision “integration” for me as a song – like Simon and Garfunkel’s song Scarborough Fair. There may be at least two melodies being sung at one time (or in my case, 3 or 4 melodies) as well as some harmony and lovely instrumentals….but I never intend to be just “one.” Do you strive for integration and what does integration mean to you?

DONNA WILLIAMS (et al)
Wonderful question and great example. We love Jack Johnson’s ‘Better Together’ as our integration song 🙂 We see CO-OPERATION as part of forming internal family out of my pack of 9 once severely estranged semi-strangers of different genders, races, ages, sexual orientation, social perspectives etc… and they have really gained respect for each other once they learned what each went through and the way they are supporting each other is really moving, those who had wanted to kill each other off, had shame of each other, felt intimidated by each other etc…

and in that process they learned to stop spouting about each other, stopped presuming, assuming, started tuning in, learning about each other, and caring about and loving each other, and admiring each other’s strengths, offering to stand alongside them so they could improve skills where they had developmental deficits, that’s just fab… and in that process Da and Rose (Dondola) began to merge naturally, then Carol befriended Polly and they began to semi-merge and Willie and Addie began to semi-merge, and Anne began to share the body with Dodds in shared time (Dodds struggles to speak and Anne can speak) so we can see integration as a natural process for us. Of course on that road several feared they’d die, disappear, be killed off or wanted others to just disappear and leave just them etc, but they’re all over that now. And we did have to negotiate names as merging began so Da and Rose became Da *)*) to indicate it was ‘Da’ made up of two selves, that sort of thing. And sometimes they’d give each other a few days to mutually decide they felt ok with a shared name.

SARAH SMITH (et al)
I am quite high functioning most of the time. In fact, I’m a public school teacher. I work full time and receive very high ratings on my job evaluations. I was elected to the school board, and have served as a mentor teacher. When I crash, which happens at least once a year, I crash hard. Sometimes I just need time off from work, sometimes I am hospitalized. The last time I was hospitalized I missed a month and a half of work. No one in my professional life knows why. I think they assume my absences are related to my alcoholism. Sometimes I want to be up front and public about my disability, to let people know that there are people out here with mental illnesses that are wonderful, caring, intelligent people in society. But I am afraid to do so, I even published my book under my alter’s name (as is this whole interview, as she is a major contributor to my creative process.) Do you think people with disabilities have a responsibility to educate the public about their disabilities, even ones with negative stigma attached like DID?

DONNA WILLIAMS (et al)
Health comes before responsibility to the public. I was already ‘famous’ and people knew about Willie and Carol so disclosing about my DID diagnosis was received really healthily. Of course there’s fanatics who want to do public dissections and arm chair diagnoses who lust for a ‘good case’ to get the forks into, so being public and having DID is tough and in my case although I’ve been open about it I don’t share the details of what I’m going through in therapy, that’s sacred. When its well in the past and I feel resolved about it, maybe I’ll share some of that stuff here and there as and when if, and only if, it is likely to be of therapeutic use to others. But my life, my story, my journey is not ‘meat’ for the public, its a life or a real breathing human being and one who was programmed to feel like an object, a toy, a doll, like meat, so claiming personhood, keeping that sacred is important. Disclosure is when one is ready, if ever.

SARAH SMITH (et al)
I see my “system” as not only emotional, but also very physical. What I mean is that I imagine a part of my brain is dedicated to one alter’s personality, memories, emotions, etc and another part of my brain is dedicated to another alter’s, etc. These parts of my brain have some neural connections, and with time and focus and I can access their memories and emotions some of the time. Some of the time I cannot, it’s just a brick wall. Do you think DID patients have brains that differ from people without DID, and if so in what way? If not, what do you think causes the differences in alters personalities and memories?

DONNA WILLIAMS (et al)
Great question. Yes, I also find mine neurologically compartmentalised and I find parallels between that and Dyspraxia. I have read that brain scans did find those with DID were neurologically different. It would be interesting for that to be compared with Dyspraxia.

And I think this is a difference between those who are uncomfortable with their sense of self or feel they have none so compulsively create new fantasised selves and those with DID who have developed these compartmentalised selves they may or may not be aware have taken on their own lives.

SARAH SMITH (et al)
I have had alters since I was 12. I started drinking alcohol when I was 17, and became a heavy drug user when I was 18. I spent years smoking pot, dropping acid, and sniffing crystal meth. I believe these drugs can cause mental problems, and some of my family has insinuated that my most severe mental symptoms are due to the drug use. But I had severe problems prior to any drug use. What role do you think drugs and alcohol have in mental illness?

DONNA WILLIAMS (et al)
Hmm. Only 1 of my 9 did substance abuse although my father told me we were given speed at age 3 at the home of a friend of the family, we understand we was given pills and alcohol from around age 3, Carol and Da remember first being made to drink a bottle of champagne until we couldn’t stand when we were 7 and we were on medication from age 9. So we don’t see substances as causing my DID though the misuse of them was part of the abuse and endangerment which caused our DID. By our teens Marnie was drinking and abusing prescription medication and my abuser used this to convince us we had brought my whole life upon ourselves. We think that says more about our abuser than us. We think that we cannot imagine more teenagers escaping what we escaped with the only escape being the streets and the abuse there and NOT using self medicating to manage the trauma, disorientation, terror, nightmares, PTSD until they got professional help to start making sense of it.

SARAH SMITH (et al)
How does your system deal with the issues of religion and spirituality? I see the two of them differently. Religion is the human’s way of recognizing and responding to the Spirituality of the World. So in regards to religion, one of my alters is Catholic, one is Buddhist, one is agnostic. However, if I only have one body, then do I only have one soul?

DONNA WILLIAMS (et al)
When we were about 10 Addie knew about Christianity from school and that Jesus would help if you wished enough. So Addie prayed to have Jesus please stop the abuse and the killings of the animals and Jesus didn’t so eventually it was painful to believe in a God that won’t/can’t help. At the same time most of us remain spiritual and even Marnie who threw away all spirituality and embraced apathy has become relatively spiritual. Addie would have made a reasonable Christian, Willie is a spiritual atheist and a Taoist and would have made a reasonable Zen Buddhist, Anne, Dodds and Polly believe in sensing so are spiritual but not religious. We also questioned do we all die when the body dies, and at the same time? We also still aren’t sure if we’re one soul or collectively represent one ‘soul package’, system, team 🙂

SARAH SMITH (et al)
Finally, how do you deal with making sure all of your alters are treated fairly? I have an alter who is very violent, and she cannot be in control of the body much because she would cause destruction. But if she doesn’t feel like she is being treated fairly, she gets all the more rageful. I have a system’s manager who tries to negotiated these kinds of issues. Do you struggle with issues of fairness and body availability?

DONNA WILLIAMS (et al)
Willie used to be the system’s manager but progressively shares that now with Da. Marnie used to desire only to kill the body, that she felt she would thereby erase all damage, all memories, all nightmares and be the ‘winner’ over the abusers. The others really helped her lose the many chips on her shoulders, gave her boundaries, as much acceptance as was possible, accepted her lesser forms of rage, got her a punching bag, validated her rage, and she came to accept them, eventually care about them in Marnie style.

Re fairness we created a lot of ground rules for the team and got everyone to sign up to these (or negotiate them). Everyone was welcome to leave notes and add to wish/needs lists and one of the ground rules was that others had to help each other if they weren’t present… so if one couldn’t shop and another could, the one that could would either help the one that couldn’t to do so or collect what they needed with them co-present (or not). I’m really proud of my team and how they’ve been bigger than their own stuff to develop that co-operation and respect (or at least neutrality).

SARAH SMITH (et al)
Thank you very much for your time, Donna.

-Sarah Smith, et al.

DONNA WILLIAMS (et al)
Now Sarah, do you want to add something about the title and availability of your book?

SARAH SMITH (et al)
In and Out of Ice/Glass” reads like a roller-coaster in a haunted house, telling the story of Rae who finds herself locked up in a psychiatric hospital in her 30-somethings…and 12….and ageless. She experienced a psychotic break, leading to a diagnosis of a Dissociative Disorder. A secondary theme unfolds as she simultaneously works a twelve-step program for alcoholism. This is my story, a true story, written to bring understanding of disabling mental illness and hope to any who suffer it. You can find my book on http://www.lulu.com .

DONNA WILLIAMS (et al)
Thanks for a wonderful interview.

Warmly,

Donna Williams, BA Hons, Dip Ed.
Author, artist, singer-songwriter, screenwriter.
Autism consultant and public speaker.

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