Transcript: Episode 319
319. Nestor System (Part Two)
Welcome to the System Speak podcast. If you would like to support our efforts at sharing our story, fighting stigma about Dissociative Identity Disorder, and educating the community and the world about trauma and dissociation, please go to our website at www.systemspeak.org, where there is a button for donations and you can offer a one time donation to support the podcast or become an ongoing subscriber. You can also support us on Patreon for early access to updates and what’s unfolding for us. Simply search for Emma Sunshaw on Patreon. We appreciate the support, the positive feedback, and you sharing our podcast with others. We are also super excited to announce the release of our new online community - a safe place for listeners to connect about the podcast. It feels like any other social media platform where you can share, respond, join groups, and even attend events with us, including the new monthly meetups that start this month. Go to our web page at www.systemspeak.org to join the community. We're excited to see you there.
[Short piano piece is played, lasting about 20 seconds]
[Note: Podcast host is in bold. Guest is in standard font]
Maybe it will 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, but when we were growing up it was almost universally fatal before a person reached their 40s. And so 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.
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 kind of 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 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 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.” And I feel-. Hmmm. Yeah. And, and I felt like, 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 identified—we kind of have the inverses that—we have an identified rock or an anchor.
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 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 in the development of something like DID, it's just as much about how people react to it in the context of a family or community or a societt, and not just what's caused by the disability itself.
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.
Oh, for sure. Pigeonhole is such a good word. I want to piggyback off that a little bit 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 what being multiple meant to me. And what I landed on was to try to avoid assigning particular roles as identifiers of who each altar was. It's not that those roles weren't applicable. But, 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 this pigeonholing.
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 I have seen that show up in different ways at different times. But also even like on the podcast last year when everything was so dark and difficult and so intense, and there were big feelings all 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, 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? Under the water.
Community members, if you're on the Systemspeak community, there's a great iceberg whiteboard drawing that Emma's Sunshaw posted explaining how big feelings come from a more basic earlier tender feelings. It's a great teaching tool, something I definitely want to use with my kids. My inside kids; I guess I don't actually have outside kids. 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, and I was being tired, and so that was all together a lot of misattunement. Right? And I just wanting to explode. And I thought, “This is one of those moments I do not want to be a monster like my parents. I have to in this moment, whether they deserve that or not…” No, I'm kidding. “…But in this moment, I have to intentionally and consciously choose to parent differently.” 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 the 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 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. And really, it's scary because now I feel alone.” And the kids were just like, “What happened to mom?” [Laughter]
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.” Like, yes, we live in a house and so we need to be good stewards if we want to keep the house. So things like chores and homework, that kind of stuff, like, 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. Bla ba ba. So that's where the iceberg came from. [Laughter]
Oh my goodness. What a cool, well gee, what a cool teachable moment. It's so, it's so tragic that sometimes our reactions to feeling alone or feeling scared kind of elicit more feeling alone because people give you a wide berth, or they don't want to, or they just don't want to be around you.
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. I could feel it welling up in me where I was just going to be angry. And that's not who I want to be. Not that being angry is bad; feelings are feelings, and that's okay. But it was not going to be pretty anger. [Laughter] It was not going to be nice or productive anger. It was going to just be nasty. And I had this like flashback of my mom. And I was like, “Oh, I do not want to 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 inter-. 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 need 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.” 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. 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 want to push them away, is when I need to draw them in.” And the best I could do was with the drawing on the whiteboard.
That's such good communication. I had the experience, when I first began to suspect I had autism was probably an early high school because I was a kid with an internet connection. And, 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 them. What I would read about the social difficulties that people on the spectrum had was all about how we can’t intuit what other people want, 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.
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 relationships 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.” Right? He never has to guess. Like I'm not, that sounds bossy. I'm not bossy. But I communicate, “I need this” or “Could you help with that?” or “Do whatever you want,” or, you know, whatever. We can talk about it, and 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. Like, it's just informational, right? And so I have to be really careful with hearing people because they don't appreciate those kinds of things.
And you have to have a different kind of tact with hearing people. We call it the hearing sandwich. Yes. 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, I just, “Talk to me, I don't understand. 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 something or prefer or whatever, then I'm pretty good about expressing it because of the Deaf culture piece. So that's a strength. Yay for identifying a strength. But it's hard. That's a huge strength. 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, I'm still learning that. And so it's a hard thing.
But I'm, I'm curious. 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. And so there was just lots of screaming, for years, so much screaming. 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 like, unscrew my brain and hand it to him for him to be able to regulate. I've just, “I'm with you. We're actually safe. What you're saying is not really happening. But your feelings are real. And they are, I'm so sorry you're feeling-.” 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. And so we suspected autism because he had some of the classic things of like us 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?” 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 ones. 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.
Oh, for sure. I think, it's so funny, 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 90s, and take two of them and lean them together like a little, like a little tent, and then put a stuffed animal in there. And it was like a huge circle of these video tents in the living room. And that was my form of, that's what I did instead of playing pretend. I would like to line things up or stack them 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 [sounds distortions] college. Because we were basically kind of pushed-. I don’t want to say pushed out of the nest because that's sort of, that's a little inaccurate, that's kind of judgmental. 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 Cat 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 online calendars effectively. 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 needed to be have explicitly worked through with us on a one on one basis.
It's funny that you talk about your two sons and the huge spectrum of that, 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 sub normal but kind of like in the okay range, except for verbal ability which jumped up to 149. Our average IQ over all those all those domains was 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 clinical psychologist said it was the biggest gap he had ever seen in in ability.
What do you attribute that to?
That's a really interesting question. I think that part of it would be just the way our particular brain the ASD showed up in that were a little bit almost hyperlexic. Like, I find that I really depend 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 almost live in like a little like a black and white, sometimes I read and use documents so much I feel like I live in a flat black and white world instead of in space. And I think the other thing that I would attribute that to is just the way that we were raised. Our dad is, is an 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 use the adult vocabulary around the children that they would come to understand you. 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, um-. 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 I don't want to, I don't want to trauma dump or get to get too triggery. 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 100% on point 100% of the time, because being less than perfect or less than correct was dangerous for us.
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. Were exactly what you said, really, mistakes 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. I mean, you said it so simply. There's no way, no better ways 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. That's relational trauma.
Absolutely. I think. 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 anything that is potentially life threatening. like, I was at a car accident and my life was in danger, and from that I have trauma. That's not really my story. 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 bruise ourselves walking into a door. There's a huge difference between between an accidental injury and little booboo that you give yourself, versus interpersonal violence. And so I have to try to think of emotional abuse or emotional trauma as just the active ingredient of most of any kind of interpersonal trauma. So, you know, make it-. I think, I think at some point the difference between domestic violence, for example, that’s physical and domestic violence that's emotional, it's the same ingredients but it's just delivered in a different way.
Even when it happens at school. Oh, my gosh, so true. 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.
Oh. It's such a big context. And any time that our needs are not being met or responded to, that's, 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. 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 just wanted to make sure you got to share what you wanted to share.
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 symptoms shuffling that we kind of experience. I’ve remained curious about that. That I haven't gotten a really-. There's, there's no data, you 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. It's interesting. How it presents or is experienced.
Yeah. I have to think that people with disabilities would be over represented in the DID community because people with disabilities are more likely to become victims of abuse. And if you're, if you're hurt, your body might have evidence of that hurt.
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 helps those, and what meets those needs, or how does that show up? Or how is it expressed? How is it received? What is attunement look like with that? Those kinds of things.
Oh, for sure. I think attunement is such a good word because I worry with the people that I'm around that I misattune 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 kind of 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.
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 like with other things, like, what 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 [Laughter] that you've done. This thing is such a gift to our community. And yet, it's your thing. 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?
Wow. That's a lot. [Laughter] I feel such a sense of fulfillment that I'm able to take this thing that was just kind of a natural outgrowth of the compulsivity that we possess, and turn it into something that could benefit people because we have this platform now.
Well, thank you for talking to us. Again, thank you so much.
Thank you. It's been so good to be here. And I, I want to, I want to put something out there 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 need collaborators who are multilingual. Because there is probably more stuff out there for consumers or professionals that I can't evaluate because I don't know what I'm looking at.
I'm loving the collaboration that's coming from this community. So good. 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. [Laughter] So true. But it's practice, right? And, for it to really be healing, I was just talking to my friend Peter about this today, for 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 that 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's giving us practice it that in practical ways that feel safe. And I love that so much. So thank you. Thank you for all you're doing.
Thank you for all you're doing. This wouldn't be possible if you weren't the person, the people that you are. [Laughter]
Thank you so much. Really, really, I'm so grateful.
Thank you so much. It is, it has been a privilege to be part of this community. And I look forward to what we can do in the future.
[Break]
Thank you for listening. Your support really helps us feel less alone while we sort through all of this and learn together. Maybe it will help you in some ways too. You can connect with us on Patreon. And join us for free in our new online community by going to our website at www.systemspeak.org. If there's anything we've learned in the last four years of this podcast, it's that connection brings healing. We look forward to connecting with you.