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Diagnosed with Complex Trauma and a Dissociative Disorder, Emma and her system share what they learn along the way about complex trauma, dissociation (CPTSD, OSDD, DID, Dissociative Identity Disorder (Multiple Personality), etc.), and mental health. Educational, supportive, inclusive, and inspiring, System Speak documents her healing journey through the best and worst of life in recovery through insights, conversations, and collaborations.
Over:
Speaker 2:Welcome to the System Speak Podcast, a podcast about Dissociative Identity Disorder. If you are new to the podcast, we recommend starting at the beginning episodes and listen in order to hear our story and what we have learned through this endeavor. Current episodes may be more applicable to longtime listeners and are likely to contain more advanced topics, emotional or other triggering content, and or reference earlier episodes that provide more context to what we are currently learning and experiencing. As always, please care for yourself during and after listening to the podcast. Thank you.
Speaker 1:Maybe it would be useful for me to add a little bit of context, but in addition to having autism, we are actually the oldest of four siblings, and all three of our younger siblings have a disease called cystic fibrosis. It's a condition that's hereditary, and so both sides of our family actually carry this. And it progressively deteriorates the lungs and the digestive system among other body systems. And even though today our siblings' condition is manageable through medication, by when we were growing up, it was almost universally fatal before a person reached their forties. And so our our role in that family system was almost to be the easy child and to kind of not really have not really to have needs or to have anything wrong with us.
Speaker 1:There's a great sitcom out there on, ABC or I think it's now streaming on Hulu called Speechless, which is about a family that has their eldest son have quadriplegic nonverbal cerebral palsy. And it's it's kinda basic sitcom stuff for modern TV, but it was the first time that I had seen a family system like mine portrayed on TV. And there's a there's a scene in that there's a scene in speechless where, their younger son who is healthy and normally developing develops appendicitis on a family trip. And they're getting him prepared for an epi appendectomy, and one by one, all the family members go in. And the father leans in close to his healthy younger son who's preparing for the surgery and says, if you repeat this to anybody else, I'm going to deny it, but you are not allowed to have anything go wrong with you.
Speaker 1:And I feel yeah. And and I felt like that that that actually kind of got to me when I first saw it because that pretty well reflected how how our family worked. Some families have an identified patient. We kind of have an we kind of have the inverse of that. We have an identified rock or an anchor.
Speaker 1:And so when it became evident that we were struggling more in school and that we were not making friends, that we were continuing to be bullied by other kids, it was really difficult not just to, to have this issue by itself, but for what that issue meant in the context of the family system. Yeah. And so when we talk about the overlap between, autism and trauma or autism and the development of something like DAP, it's just as much about how people react to it in the context of a family or a community or a society and not just what's caused by the disability itself.
Speaker 3:I don't know. It makes me think of fawning almost where externally you're being sort of coerced, if that's not too strong of a word, but pigeonholed into a particular role in your family and not really allowed to deviate from that or be something else or have other issues or something go wrong. And that's its own kind of trauma, really. And I'm just thinking of all the survivors out there who had to be the good child or the quiet child or the well behaved child or whatever the label was, and yours was healthy. You had to be healthy.
Speaker 1:Oh, for sure. Pigeonhole is such a good word. I I wanna piggyback off that a little bit and and actually think about something that I kind of was beginning to think about even very early in my journey of understanding what DID was or or what being multiple meant to me. And what I landed on was to try to avoid assigning particular roles as identifiers of who each alter was. It's not that those roles weren't applicable, but then but just that a label like a protector or a persecutor or a trauma holder just felt reductive, or it felt like a secondary form of of this pigeonholing.
Speaker 3:That's interesting because we've not done a lot of that either. I mean, I've seen aspects of that in different ones, or or I have seen that show up in different ways at different times. Mhmm. But, also, even, like, on the podcast last year when everything was so dark and difficult and and and and so intense, and there were big feelings all the over the place. And it would have been easy to say, like, oh, that one's a protector, oh, that one's a persecutor, or whatever.
Speaker 3:But, really, they were hurting. I was hurting. We were hurting. And to only label or only define someone by their external behaviors really dismisses everything that's going on, like they say, under the iceberg. Right?
Speaker 3:Under the water.
Speaker 1:Community members, if you're on the system speak community, there's a great iceberg whiteboard drawing that that that Emma's Sunshaw posted explaining how big feelings come from more basic earlier tender feelings. It's a great teaching tool, something I definitely wanna use with my kids, my inside kids. I don't actually have outside kids.
Speaker 3:It's all a blur. It's the same. They all have the same needs. We had issues with the the outside children this week. They were being punks, I was being tired, and so that was altogether a lot of misattunement.
Speaker 3:Right? And I just wanted to explode and I thought this is one of those moments I do not wanna be a monster like my parents. I have to in this moment whether they deserve it or not no. I'm kidding. But in this moment, I have to intentionally and consciously choose to parent differently.
Speaker 3:And I was standing by this giant whiteboard that we have in our dining room because I'm teaching the kids algebra this summer, the triplets. And so I grabbed a marker and I just started drawing and I put angry at top over the water and then I drew the iceberg under the water and I was like, I'm angry because really I'm hurt because you're punks and I feel betrayed. And and I feel betrayed because when you treat me like that, it feels like you don't love me. And when I treat you like this, you feel like I don't love you. And really, that's scary.
Speaker 3:And really, it's scary because now I feel alone. And the kids were just like, what happened to mom? But it was helpful, and it put things into words and got conversation going and back on track of this is not about, like, the dishwasher or your laundry or how clean your room is. This is about our relationship. And your relationship, our relationship, our relationship matters more to me than anything else.
Speaker 3:Like, yes, we live in a house, and so we have to be good stewards if we wanna keep the house. So things like chores and homework, that kind of stuff, that's part of being a person in a home. So, yes, those things matter, but our relationship matters more than anything else, and you can't we can't let this invade our relationship. So that's where the iceberg came from.
Speaker 1:Oh my goodness. That's what a what a cool well gee, what a cool teachable moment. It's it's so it's so tragic because it sometimes our reactions to feeling to feeling alone or feeling scared kind of elicit more feeling alone because people give you a wide berth or they don't wanna or they don't just don't wanna be around you?
Speaker 3:You know what? That's interesting that you say that because I feel like it's a reenactment for me because I could feel, like what I didn't. Thank goodness. Thank goodness. But I had to mobilize, like, in the trauma response, I had to do something different or I was going to do this reenactment.
Speaker 3:I could feel it welling up in me where I was just gonna be angry and that's not who I wanna be. Not that being angry is bad. Feelings are feelings, and that's okay, but it was not gonna be pretty anger. It was not gonna be nice or productive anger. It was gonna be nasty.
Speaker 3:And I had this, like, flashback of my mom, and I was like, oh, I do not wanna do that. Right? But when we talked about it and when you said that just now when you said that just now about how other people treat us, I think that I I think that I reenact that in other ways because there's that whole thing of when we most need to connect with others, it's when it's hardest to do. But there's also times when I most mean people to, like, you have to show up because I need support right now or I'm not going to make it. And they're like, oh, we should give you space, so we're gonna give you lots of space.
Speaker 3:And I'm like, you're killing me. That's the opposite of what I need. I never said that. You made that up in your own head. That's not what I need right now.
Speaker 3:I need connection. I need evidence that this is real. And so I think I think I saw that with my kids, and I was like, oh, okay. So when I most wanna push them away is when I need to draw them in. And the best I could do was with the drawing on the whiteboard.
Speaker 1:That's such good communication. I've I had the experience when I first began to suspect I had autism. Was probably in early high school because I was a kid with an Internet connection, and it and, frankly, despite us being a girl and being more highly verbal, which are two pretty big barriers to getting diagnosed, there were some things that, in hindsight, were pretty, pretty obvious. Didn't get diagnosed until we were 19, but certainly knew that I was autistic well before that. What I would read about the social difficulties that people on the spectrum had was all about how we can't into it what other people want.
Speaker 1:We have trouble reading social cues. We're not getting this or we're not getting that. And there was not a lot being written in the way of let's make communicating our emotional needs more explicit. So it turns out that what is necessary for people on the spectrum to kind of have good friendships and good relationships and good communication is actually useful for everybody. We all benefit from being able to explain why we're feeling or acting a certain way and telling people what we need in return.
Speaker 3:I think that that's so important, and it's such a big struggle when you don't know that you have permission to have needs. It's hard to learn how to identify them, but when you can, it makes a relationship so healthy. The husband loves that about us. Like, we're an easy spouse in that way of, like, I'm, like, I need this and this and this. Everything else, we're good.
Speaker 3:Right? He never has to guess. Like, I'm not that sounds bossy. I'm not bossy. But, like, I communicate.
Speaker 3:I need this or could you help with that or do whatever you want or, you know, whatever. We can talk about it, I can be explicit about that and direct. But the reason I can do that with him is because that comes from deaf culture. Deaf culture is very blunt, very direct, and in deaf culture, like, they would say, hey. You should never wear that shirt again because it's really ugly, and it's not offensive.
Speaker 3:Like, it's just informational. Right? And so I have to be really careful with hearing people because they appreciate those kinds of things, and you have to have a different kind of tact with hearing people. We call it the hearing sandwich, where you have to say something nice, and then you say the truth, and then you say something nice again. And so it's really hard for me sometimes in friendships because I don't speak girl, and I don't know, like, I can't take apart the sandwich and figure out what they're actually trying to say, and I can't, like, just talk to me.
Speaker 3:I don't under like, I feel like you're alluding to something here, or maybe you're expressing that I should know what you're thinking, but because you haven't actually said it, I don't know what you're thinking. Like, just tell me. Just tell me. And so in therapy, recognizing that is interesting because once I know something of, like, what my need is or what I wished or hoped or want or some or prefer or whatever, then I'm pretty good about expressing it because of the deaf culture piece. So that's a strength.
Speaker 3:Yay for identifying a strength. But it's hard.
Speaker 1:That's a huge strength.
Speaker 3:Right? But it's hard to figure out what the need is. Like, I'm still learning to know when I'm hungry and, oh, I should stop and eat right now. Like, that's like, I'm still learning that, And so it's a hard thing. But I'm I'm curious.
Speaker 3:This is changing the topic, but I'm curious what that was like for you not getting your diagnosis until you were 19. I'm thinking back to I have a son that we didn't know he had autism until he was nine. No. Till he was eight seven or eight because he also has fetal alcohol syndrome, So there was just lots of screaming for years. So much screaming.
Speaker 3:I mean him, not us. So much screaming for years and years and years because he couldn't regulate his feelings. I literally had to unscrew my brain and hand it to him for him to be able to regulate Calm down. I've just, I'm with you. We're actually safe.
Speaker 3:What you're saying is not really happening, but your feelings are real, and they are I'm so sorry. You feel like, had to really walk it through. But once he hit about seven or eight, he had so much perseveration and, like, so much talking and such social awkwardness. They finally caught it at school and then sent him to the psychologist and the physician. But our oldest son, when he came to us, he was only four, but he was not verbal yet.
Speaker 3:And so we suspected autism because he had some of the classic things of, like, he was running around on his toes and flapping his hands, and he couldn't talk. And then by the time he was six, he was like a lot of echolalia, like, I would say, are you hungry? Do you want to eat? He would say, are you hungry? Do you want to eat?
Speaker 3:Like, even repeating the whole sentence after we got that much speaking. So with him, it was very sensory based and very a little bit lower functioning than the other one, so they expressed very differently. And I think that's one thing that people forget about autism is that it shows up so many different ways.
Speaker 1:Oh, for sure. I I think it's so funny. I I had a little tiny flashback when you said he would run around on his toes because I used to do that as well. I used to take all the VHS tapes that we owned because I was a child of the nineties and break a and take two of them and leave them together like a little like a little tent that that put a stuffed animal in there, I would make a huge circle of these video tents in the living room. And that was my form of that's what I did instead playing pretend.
Speaker 1:This is that I I would, like, line things up or stack them or or do random things. But, anyway, it was it was super interesting being diagnosed when I was 19. It was actually not a fortuitous time because that diagnosis came after we collectively completely failed here at a three year college because we were basically kinda pushed. I I I wanna say pushed out of the nest because that's sort of that's a little inaccurate. It's kind of judgmental.
Speaker 1:But we were basically set off with the assumption that we would figure it out without having without having real life skills or self regulation skills or the ability to manage time. Not only were we having, like, daily panic attacks over having to leave our bed or having to leave the dorm room or having to be back in a classroom. This was about the same time that I, as Kat, began to explicitly remember some of the trauma that took place in classrooms. But we also, after getting our diagnosis, had to go through a couple of years of speech and occupational therapy. Not not to, like, learn how to speak, but to learn the things that probably should have been taught when we were much younger about, like, planning for the unexpected or using a planner or using count online calendars effectively.
Speaker 1:All of these things that most people are, either taught when an adult realizes that they don't know these things or kind of pick up on their own, we really need it to be have explicitly worked through with us on a one on one basis. It it's funny that you talk about your two sons and the huge spectrum of, so to speak, of communication that they have. We're kind of I firmly believe that only losers talk about their IQ, but I'm gonna go here just because I think it's important to understand for this context. When we got our when we got our diagnosis, one of the things that they had done was one of the IQ tests where it has multiple multiple domains for, like, spatial abilities and verbal abilities and blah blah blah. And everything was normal or subnormal, but kind of, like, in the okay range except for verbal ability, which jumped up to a 149.
Speaker 1:Our averaged IQ over all the doe all those domains was a 115. So that's so everything everything is, like, down here. We're very we're very kind of from a cognitive perspective, we're very boring except in this one area where we have a verbal hill. Our our our clinical psychologist said it was the biggest gap he had ever seen in in in ability.
Speaker 3:What do you attribute that to?
Speaker 1:That's a really interesting question. I think that part of it would be just the way our particular brand of ASD showed up in that we're a little bit almost hyperlexic. Like, I find that I really depend on on the printed word and on my vocabulary and my ability to talk to people in order to get by, but I really struggle with, like, spatial abilities. I I almost live in, like, a live in, like, a black and sometimes I read and use documents so much. I feel like I live in a flat black and white world instead of in space.
Speaker 1:And I think the other thing that I would attribute that to is just the way that we were raised. Our dad is is the attorney and our mom was a businesswoman. I say was because she retired. Our mom is still with us. And they really emphasized not talking down to the kids, and expecting that if you used adult vocabulary around the children that they would come to understand you.
Speaker 1:And so I remember our dad saying things like, don't antagonize your sister. There's a less savory aspect to, not to the way that our parents treated us, but to the way that we were brought up in school. We were from California, which was kind of more ahead in in the nation. California, at the time, was more ahead in the literature side of things and more behind in the mathematics side of things. But our I don't wanna I don't wanna trauma dump or get too, get too triggery.
Speaker 1:So I'll just say that the school that we went to was a private religious school and they were very punitive. And some of the things that would trigger punitiveness would be things like, mistakes in, your spelling or punctuation or in the word choice that you used, your grammar, your handwriting. And so we have this really this, like, hypervigilance around the way that we speak, and it can lend itself to this kind of overprecise, overcorrect way of speaking. We've been called pedantic more than once for that reason. But, yeah, we have we have kind of within our system a few inner critics who really make sure that everything we're saying in writing is a 100% on point 100% of the time.
Speaker 1:Because being less than perfect or less than correct was dangerous for us.
Speaker 3:That's so hard. That's so hard. It almost goes back to those roles we get stuck in with trauma growing up, developmental trauma, even if yours happened at school where exactly what you said, really, are stepping out of that perfection or stepping out of that. The rules that you we have to play by. Not playing by the rules is dangerous.
Speaker 3:I mean, you said it so simply. There's no way no better way to say that. That's that's a lot. And think about the level of I just finished teaching the shame class tonight, and I'm just thinking about the level of misattunement in that example of your emotional needs not even being noticed, much less reflected or met. And then you being literally punished for them.
Speaker 3:That's relational trauma.
Speaker 1:Absolutely. I think in the trauma community, relational trauma is really hard to recognize and overcome because I know that I personally think of trauma as something that is as as anything that is potentially life threatening. Like, I was in a car accident, and my life was in danger. And from that, I have trauma. That's not really my story.
Speaker 1:I'm just making that up. So I try to think of it this way. We are a little bit what an occupational therapist might call dyspraxic. We're physically clumsy, and we get into a lot of accidents. And so pity our future spouse because we really will lose ourselves walking into a door.
Speaker 1:There's a huge difference between between an accidental injury, a little boo boo that you give yourself versus interpersonal violence. And so I I have to try to think of emotional abuse or emotional trauma as just the active ingredient of of most of any kind of interpersonal trauma. So, you know, may it I think that I I think at some point, the difference between domestic violence, for example, that's physical and domestic violence that's emotional. It's it's the same ingredients, but it's just delivered in a different way. Even when it happens
Speaker 3:at school.
Speaker 1:Oh my gosh. So true. I do I do kind of feel like I treat some of this as less as if it's less important because it took place outside a domestic setting. But we're all part of systems, and schools are a huge system in our lives.
Speaker 3:Oh, it's such a big context. And anytime that our needs are not being met or responded to, that's that that is trauma and it neurologically impacts us and it's a big big piece. And there's that layer that we see on the surface like the iceberg. Right? But then there's also all those other ways it impacts us underneath the surface that sometimes even is hard to connect.
Speaker 3:That's a lot. Were there any other autism specific pieces that you wanted to share or anything else that you wanted to say? I I just wanted to make sure you got to share what you wanted to share.
Speaker 1:No. You're totally good. I would be curious if any other people with DID and disabilities, especially neurological disabilities, developmental disabilities, also kind of experience that symptom shuffling that we kind of experience. I've remained I've remained curious about that, that I haven't gotten a really there's there's no data. You
Speaker 3:know? But that's an interesting question even just about trauma and dissociation and different kinds of disabilities and what the overlaps are, how that shows up in different ways. That's interesting. How it presents or is experienced.
Speaker 1:Yeah. I have to think that people with disabilities would be overrepresented in the DID community because people with disabilities are more likely to become victims of abuse. And if you're and if you're hurt, your your body might have evidence of that hurt.
Speaker 3:That's a lot. It's a lot to think about. It's I think there needs to be more research for sure, but it's a good conversation starter as far as getting awareness even that there are challenges and differences in all of us and what what helps those and what meets those needs or how does that show up or how is it expressed? How is it received? What does attunement look like with that?
Speaker 3:Those kinds of things.
Speaker 1:Oh, for sure. I think attunement is such a good word because I worry with the people that I'm around that I'm misattuned to them just because I'm not picking up on what they might be what they might be trying to communicate to me. So, yeah, that kinda goes back to what we talked about earlier where being explicit with stuff is really a great thing for relationships, especially if you have trauma or if there's a little bit of autism in your relationships.
Speaker 3:Well, that's a good point of something like autism and the disruption in the attunement process when those pieces aren't connecting and how, like, the experience of those needs being noticed or reflected or met and you being able to notice and reflect and meet in others and when that is possible and when it's not. And just with other things, like, is your adaptive skills? So, like, for me, I have my cochlear implants, and that allows me to pass in a hearing world differently than I could before when I only could use interpreters. And for you, things like your spreadsheets. Like, that you've done this thing is such a gift to our community, and yet it's your thing.
Speaker 3:Like, it's what you're good at and your strength, and you've, like, focused it like a laser beam in a way that's productive and useful and helpful and is such a gift to so many and literally will save lives. And I know two lives already that have been saved by it. Literally. Literally. And how powerful is that, that you just being you, having the skills that you have, that you are enough.
Speaker 1:Wow. That's a lot. I feel that it's such a sense of fulfillment that I'm able to to take this thing that was just kind of a natural outgrowth of the compulsivity that we possess and turn it into something that can benefit people because we have this platform now.
Speaker 3:Well, thank you for talking to us again. Thank you so much.
Speaker 1:Thank you. It's been so good to be here. And I I wanna I wanna put something out there just just before we completely wrap up. If anyone has time or interest in helping me track down resources that are not in English, I need I I need collaborators who are multilingual because there there's probably more stuff out there for consumers or professionals that I can't evaluate because I don't know what I'm looking at.
Speaker 3:I'm loving the collaboration that's coming from this community. It's like we would make so much progress in therapy if we could do internally what all of us are doing together in the community.
Speaker 1:So true. But it's
Speaker 3:practice. And for it to really be healing I was just talking to my friend Peter about this today. For it to really be healing, it has to be connected with someone else externally for it to be progress and healing and and moving forward in ways that not
Speaker 1:that
Speaker 3:we can we can't undo the past, but overcome it because it has to be since the wounds are in relationships, we have to heal them in relationships. And so I think the community is giving us practice at that in practical ways that feel safe, and I love that so much. So thank you. Thank you for all you're doing.
Speaker 1:Thank you for all you're doing. This wouldn't be possible if you weren't the person the people that you are.
Speaker 3:Thank you so much. Really, really. I'm so grateful.
Speaker 1:Thank you so much. It has been it has been a privilege to be part of this community, and I look forward to what we can do in the future.
Speaker 2:Thank you so much for listening to us and for all of your support for the podcast, our books, and them being donated to survivors and the community. It means so much to us as we try to create something that's never been done before, not like this. Connection brings healing. One of the ways we practice this is in Community Together. The link for the community is in the show notes.
Speaker 2:We look forward to seeing you there while we practice caring for ourselves, caring for our family, and participating with those who also care for community. And remember, I'm just a human, not a therapist for the community, and not there for dating, and not there to be shiny happy. Less shiny, actually. I'm there to heal too. That's what peer support is all about.
Speaker 2:Being human together. So yeah, sometimes we'll see you there.