Sa,
Thanks for your well-wishes and understanding!
We definitely agree that a lot of the fear and confusion (not to mention shame!) that we initially experienced as well would have been much easier to deal with had there been more narratives like this. We hope that by telling this story we can help others going through similar things.
~Missy and Skylar
Jclaude,
We thought about this a little, and you’re mostly correct in that we were just trying to get checked out by professionals.
If anything, any pleading that I (Skylar) did was at this point, since I was essentially trying to get psychiatrists to give us permission to exist and pleading with them to help us find a way to be part of that model so that we had a framework to be allowed in.
I don’t think what we’re doing now is the same thing; we’re explaining who and what we are and trying to show how we can exist without having to plead to psychiatry for our sense of identity.
~Skylar
Hey all,
Just to clarify, we’re asking for acceptance mostly from folks on here and at most, the culture at large. We have no real hope that psychiatry will pull its head out of its ass enough to accept multiples as we are. If we come off as a little pleading, that’s mostly me (Skylar) trying to sound as reasonable as possible while asking you all to accept what many consider an unbelievable phenomenon.
Thanks,
~Skylar
just to clarify for everyone in this thread, we’re pretty sure that SOs are currently allowed to post articles on MIA, as long as their articles are in line with MIA’s general theme/mission. there’s not some kind of ban on SOs being allowed to talk about their experiences, if we’re correctly informed. so we’re not quite sure how this discussion (meaning over the course of several sub-comment threads not just this one) even started if the premise is that SOs aren’t allowed to contribute, because they are. they’re just not allowed to say anything ableist or that goes against the premises of the ND movement, correct?
~Skylar and Missy
Julia,
We overstepped our boundaries in assuming things about your marriage, and we’re sorry. we won’t do that again.
However, don’t twist our words and say that any ND people want to see ourselves as children. That’s exactly the disgusting ableist idea we’re trying to combat here. no one wants to be seen that way and we never implied anything of the sort.
please don’t tell us how to identify. we’re a multiple system, autistic, with PTSD and enough emotional divergence that we’ve been diagnosed with several personality “disorders”. we claim labels like “mad” and “insane” because we deal with being stigmatized as abusive and potential murderers just for existing as we are; we’re taking those terms back and showing that “mad” people can function in relationships, even if we do so differently than the majority of people.
and what is this about our “trauma induced behavior” causing others pain? don’t tell us not to presume things about your life and turn around and insinuate that we and others who are traumatized must be hurting people! don’t you see how blatantly offensive that is?
humanbeing makes a very good point (also thanks to uprising for helping us make our point so effectively). the value of a relationship does not always lie in its being equal from a monetary standpoint and there are many other things someone can offer that make a relationship worthwhile even if it can’t always be equal due to one person being disabled.
Julia, we really don’t want to come across as rude here. it’s just that this is the kind of thing we’ve been concerned about. it feels to us like all we’re hearing is why your husband is such a horrible burden to you and how much you’re upset by having to take care of him. we’re trying to understand your perspective here but all we’re hearing is how awful it is for you to have to deal with him in your life. we’re sure you have reasons to want to stay with him aside from feeling emotionally obligated to but if not, it sounds like your relationship is not doing either of you very much good.
it makes us as ND people (Skylar especially takes the brunt of the PTSD and emotional instability) feel as though we are unworthy as people to be in relationships at all. why bother if we’re just like additional children who need to be cared for?
we’re actually in an in-system relationship (that is, with each other) and we’ve been able to work out ways to both contribute to each other’s emotional well-being and stability by setting boundaries, communicating our needs, etc. of course it’s much easier said than done and we don’t know your situation, but with all due respect, is it really helpful to explain in great detail to a lot of people on the internet how much of a burden your husband is?
sorry for the rant, and apologies if this got too personal–we didn’t mean to attack your relationship or offer unsolicited advice. this just touched a nerve with us. it makes us feel like you only see ND people as burdens when it is possible to have healthy mutual relationships. maybe that’s not possible with your husband, and if so, our condolences and may you work out what is best for both of your needs. but don’t make it sound like that’s the case for everyone.
This conversation seems to be walking a very fine line, between allowing SOs to express their feelings, experiences, and completely legitimate need for support and solidarity, and on the other hand, what we’re afraid of: treating ND people like we’re burdens.
this is not to imply that this is what you’re doing, Julia, just that we worry that giving too much unmediated space to SOs might devolve into talking about how burdensome ND people are, making SOs look like martyrs, acting like superheroes for /daring/ to support ND people since we’re /so/ difficult to deal with…etc. Again, not saying that you’ve done anything of the sort, but this is what we’ve seen happen often in “autism family” spaces and it just perpetuates ableism and stigma against ND people. It’s a very hard line to walk to ensure that SOs have space without having “freedom” to do this awful stuff.
we do agree that in many cases, committed SOs can be more effective than therapists. (though we are slightly put off by your phrasing that you’d rather have a “mutual relationship”–is that not possible with an ND person?) of course SOs have valuable experience and often a good understanding of how to help their ND partner(s), and we would of course welcome your perspectives. that is, provided that you respect our agency and expertise on ourselves.
hi all,
We admittedly haven’t read the pieces by psychs/therapists on here, but we assumed that they were there to provide an insider’s perspective on how the psych system works and how to combat it. But if they presume to speak for or act like experts on ND people, we would condemn that as well. (granted we’re not editors and get no say, but in principle this is something that should not be happening)
Again, there is nothing wrong with SOs talking about their experiences, what they do to support their loved ones, how they work on being allies to ND people, etc. The only problem we have is if SOs try to talk about the neurodivergent experiences of their loved ones as if they know just as much simply living with those people. That’s where there is potential to get into paternalistic “autism mom: territory.
In our opinion, SOs should be allowed to contribute (and, please correct us, but aren’t they allowed currently?) as long as they understand the limits of their knowledge and accept that it does not equal that of a person or people who experience neurodivergence first-hand.
Hi Sam,
What we can or can’t imagine due to trauma is not relevant. someone who does not directly experience a neurodivergence cannot have a full understanding of what living with it is like and thus cannot presume to speak on behalf of an ND person. That’s all we meant.
We have no opinion on whether you speak for your wife and girls on your blog, and we did not mean to come off as attacking you personally.
We wanted to share the perspective of the neurodivergence movement on how harmful it is to be spoken for in the way we described and why the principle of “nothing about us without us” is necessary. We’re sorry if we were harsh or implied a personal attack.
~Skylar
We can’t speak for the MIA editors in terms of why they make the decisions they do with regard to allowing SOs to write articles, but from our perspective, especially as autistic people, it makes sense to be suspicious of friends and family writing about us on our behalf.
There is a long and very damaging history in the autistic community of friends and family (“autism warrior moms” being the most egregious example) talking about us on our behalf, and saying all kinds of patronizing, paternalistic things, and talking about us like we’re burdens on them and nothing more. Because they are close to us in that way, they assumed to be “experts” on us and our lives in the same way psych professionals are, if not more so. However, they often use this platform to spread misinformation and stories of martyrdom, and this has gotten autistic people literally killed.
None of this is to say that anyone here would do anything of the sort of course!! We know that you all, especially Sam, care deeply for your SOs and family and mean them no harm.
It’s just that there is no way to be sure whether someone is the good or bad kind of outspoken family member, and guessing wrong can have severe consequences.
Another thing, and we don’t mean to offend here: you really, truly, cannot speak on behalf of someone in the sense of being able to give a first-person account of what living as that kind of neurodivergent person is like. We absolutely support SOs having a space to talk about what it’s like for them as SOs to help their loved one cope, but we strongly caution against the idea that you can speak /for/ them in any meaningful sense.
Hi Sam,
thanks for your replies and for listening to what we have to say. it’s good to have your reassurance that you intend to treat your wife and girls according to each one’s experience of self, and of course it’s good to hear how much you care about all of them. it’s also good to hear that you don’t see their multiplicity as the problem.
also, if you’d like a better, less dehumanizing term than “alter” (we hate that too!) we use headmate (like roommate) or system-mate!
please note, we’re responding to what you’ve said in response to Emily here:
we, like your wife and girls, have never known what it is like to live in a healthy environment or to be without trauma. however, we find it a bit condescending of you to suggest that those of us who live as stable multiple systems are somehow refusing to deal with our trauma. it’s as if you think that healing from or processing trauma automatically equals seeing all of us as parts. we have been in therapy for a decade now and have put in plenty of hard work to deal with our trauma, and yet we still see ourselves as multiple individuals–because we are.
also, please don’t refer to yourself as multiple unless you actually have experiences of more than one person/entity in your body–we often hear people say that feeling like one person at work, another at home, etc. constitutes multiplicity, and this is a misunderstanding of what being multiple is.
also there’s not a strict divide between multiples who come from trauma and those who are “non-dissociated” (by which we assume you mean something like not co-conscious?). we aren’t dissociated in that sense either–we share control of the body, memories sometimes feelings, and can freely communicate. yet we’re still multiple people.
terms like “singleton” are not meant to attack you, any more than terms like “cis” (meaning not trans) are. they’re words that we need to discuss our experiences with those who are not like us.
Thanks for the interesting discussion,
~Missy
Hi Sam,
We’ve been reading this thread with some interest and hadn’t intended to comment but your last reply pushed us over that edge.
We’re a multiple system, and like your wife and girls, also originated from severe childhood trauma. Like them, we’re also not working on integration therapy.
We find this notion that members of a system are just “parts” of a dissociated consciousness to be incredibly offensive and it has done nothing but impede our relationship with each other and with others outside. While we recognize that there may be a biological basis for this seeming to be the case, we think that it simply does not matter, since
1) neuroscience is a field in its infancy and is in no place to make claims about the existential experiences of one consciousness, let alone many in one body
2) we, and it sounds like your wife and girls as well, have strongly felt experiences of each being individuals inhabiting one body. This selves-experience is a vital part of who we are, just as your experience of yourself is, and to dismiss it as just a symptom of a disorder is to cruelly deny us and all headmates our voices. especially if the girls are telling you that they are separate individuals, ignoring that will likely cause them a great deal of pain. And for what? just to uphold /your/ understanding of what being a system is like.
this notion you have that multiplicity and dissociation are inherently dysfunctional is simply false in many cases. yes, of course your wife and girls may suffer with amnesia, PTSD, and other problems that come from that, but those can be worked through without scapegoating their multiplicity itself.
also you said that anyone who thinks otherwise doesn’t have a good understanding of multiplicity. um…no one (not even you) has as good an understanding as multiples ourselves and you should not tell us that our /existence/ is something you understand better than we do!
One of us writing this was treated for years as though she was just a “part” and it was deeply upsetting and only caused dysfunction (we fought a lot among ourselves, our main fronter could never let anyone else switch b/c he was so invested in being the only “real” one, we each felt immense self-loathing for “faking” our existences, etc.). Being told that you’re not real is psychologically damaging and demeaning.
thank god that you’re not trying to get your wife and girls to integrate. thank you for giving them that at least. but if you still think they’re “parts,” how will you handle making them co-con and working with all of them? to do so means each gets her own full voice in the system–if they do this and don’t automatically integrate, will you just continue to treat 7/8 of them as less-than-real? Please consider how this dehumanization may impact them psychologically.
Thank you for reading, and we hope you and your wife and girls have a happy Thanksgiving.
Sa,
Thanks for your well-wishes and understanding!
We definitely agree that a lot of the fear and confusion (not to mention shame!) that we initially experienced as well would have been much easier to deal with had there been more narratives like this. We hope that by telling this story we can help others going through similar things.
~Missy and Skylar
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Jclaude,
We thought about this a little, and you’re mostly correct in that we were just trying to get checked out by professionals.
If anything, any pleading that I (Skylar) did was at this point, since I was essentially trying to get psychiatrists to give us permission to exist and pleading with them to help us find a way to be part of that model so that we had a framework to be allowed in.
I don’t think what we’re doing now is the same thing; we’re explaining who and what we are and trying to show how we can exist without having to plead to psychiatry for our sense of identity.
~Skylar
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Hey all,
Just to clarify, we’re asking for acceptance mostly from folks on here and at most, the culture at large. We have no real hope that psychiatry will pull its head out of its ass enough to accept multiples as we are. If we come off as a little pleading, that’s mostly me (Skylar) trying to sound as reasonable as possible while asking you all to accept what many consider an unbelievable phenomenon.
Thanks,
~Skylar
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Aww, thank you for such a kind comment and for listening to our story! We look forward to writing more blogs!
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Thanks so much Bonnie! We’re glad you liked it!
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just to clarify for everyone in this thread, we’re pretty sure that SOs are currently allowed to post articles on MIA, as long as their articles are in line with MIA’s general theme/mission. there’s not some kind of ban on SOs being allowed to talk about their experiences, if we’re correctly informed. so we’re not quite sure how this discussion (meaning over the course of several sub-comment threads not just this one) even started if the premise is that SOs aren’t allowed to contribute, because they are. they’re just not allowed to say anything ableist or that goes against the premises of the ND movement, correct?
~Skylar and Missy
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Julia,
We overstepped our boundaries in assuming things about your marriage, and we’re sorry. we won’t do that again.
However, don’t twist our words and say that any ND people want to see ourselves as children. That’s exactly the disgusting ableist idea we’re trying to combat here. no one wants to be seen that way and we never implied anything of the sort.
please don’t tell us how to identify. we’re a multiple system, autistic, with PTSD and enough emotional divergence that we’ve been diagnosed with several personality “disorders”. we claim labels like “mad” and “insane” because we deal with being stigmatized as abusive and potential murderers just for existing as we are; we’re taking those terms back and showing that “mad” people can function in relationships, even if we do so differently than the majority of people.
and what is this about our “trauma induced behavior” causing others pain? don’t tell us not to presume things about your life and turn around and insinuate that we and others who are traumatized must be hurting people! don’t you see how blatantly offensive that is?
~Skylar and Missy
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humanbeing makes a very good point (also thanks to uprising for helping us make our point so effectively). the value of a relationship does not always lie in its being equal from a monetary standpoint and there are many other things someone can offer that make a relationship worthwhile even if it can’t always be equal due to one person being disabled.
Julia, we really don’t want to come across as rude here. it’s just that this is the kind of thing we’ve been concerned about. it feels to us like all we’re hearing is why your husband is such a horrible burden to you and how much you’re upset by having to take care of him. we’re trying to understand your perspective here but all we’re hearing is how awful it is for you to have to deal with him in your life. we’re sure you have reasons to want to stay with him aside from feeling emotionally obligated to but if not, it sounds like your relationship is not doing either of you very much good.
it makes us as ND people (Skylar especially takes the brunt of the PTSD and emotional instability) feel as though we are unworthy as people to be in relationships at all. why bother if we’re just like additional children who need to be cared for?
we’re actually in an in-system relationship (that is, with each other) and we’ve been able to work out ways to both contribute to each other’s emotional well-being and stability by setting boundaries, communicating our needs, etc. of course it’s much easier said than done and we don’t know your situation, but with all due respect, is it really helpful to explain in great detail to a lot of people on the internet how much of a burden your husband is?
sorry for the rant, and apologies if this got too personal–we didn’t mean to attack your relationship or offer unsolicited advice. this just touched a nerve with us. it makes us feel like you only see ND people as burdens when it is possible to have healthy mutual relationships. maybe that’s not possible with your husband, and if so, our condolences and may you work out what is best for both of your needs. but don’t make it sound like that’s the case for everyone.
thanks,
~Skylar and Missy
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This conversation seems to be walking a very fine line, between allowing SOs to express their feelings, experiences, and completely legitimate need for support and solidarity, and on the other hand, what we’re afraid of: treating ND people like we’re burdens.
this is not to imply that this is what you’re doing, Julia, just that we worry that giving too much unmediated space to SOs might devolve into talking about how burdensome ND people are, making SOs look like martyrs, acting like superheroes for /daring/ to support ND people since we’re /so/ difficult to deal with…etc. Again, not saying that you’ve done anything of the sort, but this is what we’ve seen happen often in “autism family” spaces and it just perpetuates ableism and stigma against ND people. It’s a very hard line to walk to ensure that SOs have space without having “freedom” to do this awful stuff.
we do agree that in many cases, committed SOs can be more effective than therapists. (though we are slightly put off by your phrasing that you’d rather have a “mutual relationship”–is that not possible with an ND person?) of course SOs have valuable experience and often a good understanding of how to help their ND partner(s), and we would of course welcome your perspectives. that is, provided that you respect our agency and expertise on ourselves.
Thanks,
Skylar
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hi all,
We admittedly haven’t read the pieces by psychs/therapists on here, but we assumed that they were there to provide an insider’s perspective on how the psych system works and how to combat it. But if they presume to speak for or act like experts on ND people, we would condemn that as well. (granted we’re not editors and get no say, but in principle this is something that should not be happening)
Again, there is nothing wrong with SOs talking about their experiences, what they do to support their loved ones, how they work on being allies to ND people, etc. The only problem we have is if SOs try to talk about the neurodivergent experiences of their loved ones as if they know just as much simply living with those people. That’s where there is potential to get into paternalistic “autism mom: territory.
In our opinion, SOs should be allowed to contribute (and, please correct us, but aren’t they allowed currently?) as long as they understand the limits of their knowledge and accept that it does not equal that of a person or people who experience neurodivergence first-hand.
That’s all. Thanks for listening,
~Skylar
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Hi Sam,
What we can or can’t imagine due to trauma is not relevant. someone who does not directly experience a neurodivergence cannot have a full understanding of what living with it is like and thus cannot presume to speak on behalf of an ND person. That’s all we meant.
We have no opinion on whether you speak for your wife and girls on your blog, and we did not mean to come off as attacking you personally.
We wanted to share the perspective of the neurodivergence movement on how harmful it is to be spoken for in the way we described and why the principle of “nothing about us without us” is necessary. We’re sorry if we were harsh or implied a personal attack.
~Skylar
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Hi everyone,
We can’t speak for the MIA editors in terms of why they make the decisions they do with regard to allowing SOs to write articles, but from our perspective, especially as autistic people, it makes sense to be suspicious of friends and family writing about us on our behalf.
There is a long and very damaging history in the autistic community of friends and family (“autism warrior moms” being the most egregious example) talking about us on our behalf, and saying all kinds of patronizing, paternalistic things, and talking about us like we’re burdens on them and nothing more. Because they are close to us in that way, they assumed to be “experts” on us and our lives in the same way psych professionals are, if not more so. However, they often use this platform to spread misinformation and stories of martyrdom, and this has gotten autistic people literally killed.
None of this is to say that anyone here would do anything of the sort of course!! We know that you all, especially Sam, care deeply for your SOs and family and mean them no harm.
It’s just that there is no way to be sure whether someone is the good or bad kind of outspoken family member, and guessing wrong can have severe consequences.
Another thing, and we don’t mean to offend here: you really, truly, cannot speak on behalf of someone in the sense of being able to give a first-person account of what living as that kind of neurodivergent person is like. We absolutely support SOs having a space to talk about what it’s like for them as SOs to help their loved one cope, but we strongly caution against the idea that you can speak /for/ them in any meaningful sense.
Just some thoughts, thanks for listening,
~Skylar
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Hi Sam,
thanks for your replies and for listening to what we have to say. it’s good to have your reassurance that you intend to treat your wife and girls according to each one’s experience of self, and of course it’s good to hear how much you care about all of them. it’s also good to hear that you don’t see their multiplicity as the problem.
also, if you’d like a better, less dehumanizing term than “alter” (we hate that too!) we use headmate (like roommate) or system-mate!
please note, we’re responding to what you’ve said in response to Emily here:
we, like your wife and girls, have never known what it is like to live in a healthy environment or to be without trauma. however, we find it a bit condescending of you to suggest that those of us who live as stable multiple systems are somehow refusing to deal with our trauma. it’s as if you think that healing from or processing trauma automatically equals seeing all of us as parts. we have been in therapy for a decade now and have put in plenty of hard work to deal with our trauma, and yet we still see ourselves as multiple individuals–because we are.
also, please don’t refer to yourself as multiple unless you actually have experiences of more than one person/entity in your body–we often hear people say that feeling like one person at work, another at home, etc. constitutes multiplicity, and this is a misunderstanding of what being multiple is.
also there’s not a strict divide between multiples who come from trauma and those who are “non-dissociated” (by which we assume you mean something like not co-conscious?). we aren’t dissociated in that sense either–we share control of the body, memories sometimes feelings, and can freely communicate. yet we’re still multiple people.
terms like “singleton” are not meant to attack you, any more than terms like “cis” (meaning not trans) are. they’re words that we need to discuss our experiences with those who are not like us.
Thanks for the interesting discussion,
~Missy
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Hi Sam,
We’ve been reading this thread with some interest and hadn’t intended to comment but your last reply pushed us over that edge.
We’re a multiple system, and like your wife and girls, also originated from severe childhood trauma. Like them, we’re also not working on integration therapy.
We find this notion that members of a system are just “parts” of a dissociated consciousness to be incredibly offensive and it has done nothing but impede our relationship with each other and with others outside. While we recognize that there may be a biological basis for this seeming to be the case, we think that it simply does not matter, since
1) neuroscience is a field in its infancy and is in no place to make claims about the existential experiences of one consciousness, let alone many in one body
2) we, and it sounds like your wife and girls as well, have strongly felt experiences of each being individuals inhabiting one body. This selves-experience is a vital part of who we are, just as your experience of yourself is, and to dismiss it as just a symptom of a disorder is to cruelly deny us and all headmates our voices. especially if the girls are telling you that they are separate individuals, ignoring that will likely cause them a great deal of pain. And for what? just to uphold /your/ understanding of what being a system is like.
this notion you have that multiplicity and dissociation are inherently dysfunctional is simply false in many cases. yes, of course your wife and girls may suffer with amnesia, PTSD, and other problems that come from that, but those can be worked through without scapegoating their multiplicity itself.
also you said that anyone who thinks otherwise doesn’t have a good understanding of multiplicity. um…no one (not even you) has as good an understanding as multiples ourselves and you should not tell us that our /existence/ is something you understand better than we do!
One of us writing this was treated for years as though she was just a “part” and it was deeply upsetting and only caused dysfunction (we fought a lot among ourselves, our main fronter could never let anyone else switch b/c he was so invested in being the only “real” one, we each felt immense self-loathing for “faking” our existences, etc.). Being told that you’re not real is psychologically damaging and demeaning.
thank god that you’re not trying to get your wife and girls to integrate. thank you for giving them that at least. but if you still think they’re “parts,” how will you handle making them co-con and working with all of them? to do so means each gets her own full voice in the system–if they do this and don’t automatically integrate, will you just continue to treat 7/8 of them as less-than-real? Please consider how this dehumanization may impact them psychologically.
Thank you for reading, and we hope you and your wife and girls have a happy Thanksgiving.
~Missy of the Violent Trans Empire
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