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New Recent Research as really helped me understand myself!

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New Recent Research as really helped me understand myself!

Postby KitMcDaydream » Mon Sep 03, 2018 10:37 am

All this stuff coming out recently on the differences in girls/women with Autism and the long term effects of masking and camouflaging has really helped me understand my system and why I dissociate so much, after years spent thinking I had a 'mental illness' ON TOP of being Autistic or maybe they had misdiagnosed me.

Anyway this is my system I wondered if anyone else had similar, purely down to the effects of being Autistic?

Written by one of my 'alters' Thea. (also posted on DID board)

"After reading much research from Autism charities all over the world we believe that 'our dissociation' is due to the combination of Kit having severe autism (in regards to ability to process all incoming sensory information from a very young age, resulting in her often experiencing the outside world as a 'traumatic experience') but also very high intelligence which fortunately gave her the ability to mimic other children in order to 'fit in' (for the most part) as well as early hyperlexia (ability to read way beyond her chronological age from a young age), which enabled her to stay in the mainstream school system where she had 'non-autistic' children to learn from and copy.

In that sense it was fortunate her family lived in a remote village and her local council couldn't really afford to send her hundreds of miles away to a special school for autistic kids back in the early 70's, otherwise she may well have ended up the stereotypical institutionalised 'autistic savant' and never developed the ability to create persona's in order to 'live a normal life'.

It is our belief now that these 'alters' emerged as Kit struggled to cope with the constant level of sensory overload she was subjected to daily in order to cope with 'going to school' and 'fitting in' and Kit's brain processed this as 'traumatic' (as there was no escape from it) causing her to dissociate and prefer to live in a fantasy world where her ability to create persona's/alters to cope with the daily demands of the outside world developed from a young age.

We now understand where the emergence of 'disabled characters' came about as the ongoing psychological distress manifested itself as physical symptoms easily with an already underactive thyroid. (stress affects thyroid levels) causing the symptoms of actual deafness, which in turn showed Kit this was something useful (to her to cope with her extreme sound sensitivity at the time) and so I was 'born' so to speak!

'Maddie' also evolved as a result of psychological stress (Kit had lost both her parents from cancer by then) causing the thyroid to start shutting down resulting in severe physical symptoms (she was tested for MS at the time as she lost the ability to walk and was experiencing blurred vision). However Maddie existed much longer than intended as social media kept her present with the constant need to 'check in' and present consistently at a certain level of physical disability.

As our dissociation is not exactly the same as DID and is triggered by Kit's inability to process sensory information properly, it seems she is able to control her alters much more tightly, including banishing one's no longer of use to her , recalling old ones or creating new one's as and when needed.

We think, I (Thea) did not re-emerge this time as 'deaf' because Kit no longer has the same pressures. She lives isolated, has no pressure to fit in, have a relationship, go to work and basically just does what she wants everyday on her own as that's what she likes. She just needs 'someone' to front when she has to 'deal with people'.

I do however still have the same difficulty processing sound that Kit does after all we live in the same brain! We have decided to now describe this as an 'Auditory Processing Disorder' rather than 'deafness' as we now understand the difference. As we have found through research that now hearing aids can be prescribed and set up for auditory processing disorders and you no longer have to fail an hearing test to be able to get them, making it more 'acceptable' to wear hearing aids for reasons other than being deaf.

Lastly whilst no longer been so physically restricted to the degree Maddie was (at the moment) the body still does have physical issues now (circulation problems and swelling in leg) and we are showing early signs of Rheumatoid arthritis (which Kit's mother and grandfather also had), like autism it also has its roots as a neurological condition and linked to her thyroid and the way it also affects her immune system and brain function, so it would still be fair to say we have a 'rare neurological disorder' causing this unique combination of symptoms.

Kit wanted to put this out here incase there's anyone else with autism like her who may mistakenly believe they might have DID, as although the autism has given her the ability to dissociate it's not technically the same thing as DID in the traditional sense"
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Re: New Recent Research as really helped me understand myself!

Postby Truly_happy » Mon Jan 07, 2019 11:20 pm

Hello, Kit, Thea and others.

I find Thea's thoughts to be very interesting. We are also an autistic female. Unlike you, we are a true DID system produced by repeated abuse in early childhood. What we share with you that we have not seen in other DID/OSDD systems is the ability to create "alters" at will. Two of our system's current hosts (Imre and Cullen) are actually the products of intense, repeated day dreaming. Two other hosts (Pip and Arco) are "media introjects", meaning they are based on characters that we did not create.

None of the alters meant to create anyone, but we've found the living characters are very helpful. Although each has some level of trauma from his or her backstory, they do not suffer from the same level of trauma as the alters do and are therefore more functional. They are, of course, autistic and struggle the same as the alters, but we are always learning new ways to get by.

Okay, so we were not your intended audience of people without a real dissociative disorder, but we can relate to what you are going through as an autistic system with members that are not traditional/true alters.

- the Neighborhood System
We are the Neighborhood, a large, co-conscious DID system.
Outsiders:
Imre ("EEM-ruh") - male, 20s, compassionate
Cullen - male, 13, loves life
Marcella - female, 30s, zesty
Pip - male, 12, happy

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Re: New Recent Research as really helped me understand myself!

Postby KitMcDaydream » Fri Jan 11, 2019 2:43 pm

Hi

Maybe the ability to create alters comes from the autism rather than the DID then?

Autistic kids are very different from Neurotypical kids in general (without any other illnesses involved) so it maybe makes sense that an Autistic person with DID may also not present in a way typical of DID alone and the Autism itself will affect how the DID manifests itself?

Have you ever read Donna Williams blog (author with Autism/DID) where she also interviewed another female with autism/DID and they discuss their 'alters' in depth,what role they played and how their autism affected their DID and vice versa? It's really quite fascinating (well found it very interesting!)

https://blog.donnawilliams.net/2012/06/ ... versation/


I have met other autistic people in my life, but most had accompanying learning difficulties which meant they did not have the ability to explain verbally or in writing anything like what I experienced, so have never met any other autistic person who also had alters in my life.
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Re: New Recent Research as really helped me understand myself!

Postby Truly_happy » Fri Jan 11, 2019 9:14 pm

Donna Williams? I have watched her YouTube videos on DID, but I have not read her blog. I find this article interesting, although I don't have the patience to read it all in one sitting. (I should come back to it, though.) I did not know that autistics used dissociation as a coping technique more than others, but this makes sense why so many DID systems I meet are autistic. One autistic person has told me that his inner-world contains whole cities populated with people who are not alters, but the city dwellers are real people the same as himself, and he claims to be an alter. I did not know if their non-alters are like mine, but it seems they could be.

One thing that separates my living characters from the alters is that they cannot "integrate", or fuse together. The characters can disappear, though, if they are not serving a purpose in the system. We can make them come back by thinking of them, though. Doesn't Kit have this control? (Of course, even our characters can create other characters ... :shock: )

As for meeting other autistics, I think everyone has met more autistics than they realize because autism presents in such a wide-ranged spectrum of functionality. There were people in my life who know a lot about autism yet had no idea that I am autistic. Now, I suspect just about everyone on my mother's side of the family to be autistic (including my mother), and only one has been diagnosed, because he is lower functioning than everyone else. :roll: This may be a coping technique (like saying, "I'm not weird! I'm just a member of the family."), but I have good reasons to believe autism runs strongly in my genes.

- the Neighborhood
We are the Neighborhood, a large, co-conscious DID system.
Outsiders:
Imre ("EEM-ruh") - male, 20s, compassionate
Cullen - male, 13, loves life
Marcella - female, 30s, zesty
Pip - male, 12, happy

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Re: New Recent Research as really helped me understand myself!

Postby KitMcDaydream » Sat Jan 12, 2019 10:51 pm

Truly_happy wrote:Donna Williams? I have watched her YouTube videos on DID, but I have not read her blog. I find this article interesting, although I don't have the patience to read it all in one sitting. (I should come back to it, though.) I did not know that autistics used dissociation as a coping technique more than others, but this makes sense why so many DID systems I meet are autistic. One autistic person has told me that his inner-world contains whole cities populated with people who are not alters, but the city dwellers are real people the same as himself, and he claims to be an alter. I did not know if their non-alters are like mine, but it seems they could be.

One thing that separates my living characters from the alters is that they cannot "integrate", or fuse together. The characters can disappear, though, if they are not serving a purpose in the system. We can make them come back by thinking of them, though. Doesn't Kit have this control? (Of course, even our characters can create other characters ... :shock: )

As for meeting other autistics, I think everyone has met more autistics than they realize because autism presents in such a wide-ranged spectrum of functionality. There were people in my life who know a lot about autism yet had no idea that I am autistic. Now, I suspect just about everyone on my mother's side of the family to be autistic (including my mother), and only one has been diagnosed, because he is lower functioning than everyone else. :roll: This may be a coping technique (like saying, "I'm not weird! I'm just a member of the family."), but I have good reasons to believe autism runs strongly in my genes.

- the Neighborhood


I would have considered the person imagining fantasy worlds with characters in it as imagination and more like 'maladaptive daydreaming' if it dominates all the persons time?

Kit using her imagination to fantasize about living in the wilderness after watching a TV program on it, is not the same (at least not for us) as one of our alters immediately going 'up front' if someone rings the doorbell or 'fronting' to attend an appointment.

When Kit imagines something its usually based on reality in some sense eg she has a favourite place she'd love to live if she ever won the lottery, but the house really exists and her 'imagining' involves her running about with her dogs (including one that died which she imagines how the dog could have reincarnated and how she finds her again), there's no other humans in her fantasy, unless she's using imagining to work out how to deal with a situation with another person (that's happening in real life).

For us the alters were specifically 'created' to deal with real life such as Kit having to attend school, college, work etc and they only 'existed' when other people were around in real life (at least up until the invention of the internet, chatrooms and social media etc). Usually only one is active at once for many years taking care of 'public life demands', but recently over the last few years Kit has become more aware of switching between different alters and creating new ones as the physical body's ability has changed as it has aged. It's only since she started doing a journal that 'alters' have become aware of each other.

I can 'co-exist' with Kit so for example walking the dog which Kit loves as long as no-one is about so I maybe 'upfront' to get us to the isolated area Kit wants to go to and if no-one is about when we get there I swap places with Kit but stay just in the background incase another dog walker comes along. 'Kit' has never spoken in public or even on a phone, so an alter has to front if anyone expects 'us' to communicate with them. As an alter is always present then most people only know the physical body as a specific alter.. eg Thea was the one people saw and knew in KIt's 20's, Maddie covered most of Kit's 30's and 40's. I have 'evolved' over the last year as Kit felt she needed a new alter to represent the bodies changing physical ability as it enters its 50's.

Maddie comes back for certain people and to deal with medical appointments for consistency as she is the alter who was upfront when the body was originally diagnosed (with its physical issues) As Kit didn't want to and didn't know how to explain DID it's easier for Maddie to come back for specific situations than for us to have to explain why our personality and physical ability has changed completely since that person last saw who they believe to be 'Maddie'.
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Re: New Recent Research as really helped me understand myself!

Postby Truly_happy » Sun Jan 13, 2019 5:22 pm

I have no idea where the cities and the people came from. They could indeed have been made by one alter who never fronted and spent all his or her time creating, but I am not able to contact this system anymore, so I have no way of knowing for sure.

Based on how you explained your origins and functions, I would say you guys are legitimate alters. If you don't experience amnesia, you may not have DID but Other Specified Dissociative Disorder 1b. Of course, there is the question of whether or not you have a disorder at all, since this is clearly designed to help you function. Still, I think you can safely call yourselves alters.

- Marcella
We are the Neighborhood, a large, co-conscious DID system.
Outsiders:
Imre ("EEM-ruh") - male, 20s, compassionate
Cullen - male, 13, loves life
Marcella - female, 30s, zesty
Pip - male, 12, happy

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Re: New Recent Research as really helped me understand myself!

Postby Truly_happy » Sun Jan 13, 2019 8:39 pm

Truly_happy wrote:Based on how you explained your origins and functions, I would say you guys are legitimate alters. If you don't experience amnesia, you may not have DID but Other Specified Dissociative Disorder 1b. Of course, there is the question of whether or not you have a disorder at all, since this is clearly designed to help you function. Still, I think you can safely call yourselves alters.


I'm afraid this didn't sound right. I know I don't have the authority to diagnose you, and that is not what I'm trying to do. What I'm trying to do is state that your claim of not having DID does not make sense when I look at the things you've said about your dissociation.

For example, you said this:

KitMcDaydream wrote:Kit wanted to put this out here incase there's anyone else with autism like her who may mistakenly believe they might have DID, as although the autism has given her the ability to dissociate it's not technically the same thing as DID in the traditional sense"


However, paragraphs before, you said this:

KitMcDaydream wrote:It is our belief now that these 'alters' emerged as Kit struggled to cope with the constant level of sensory overload she was subjected to daily in order to cope with 'going to school' and 'fitting in' and Kit's brain processed this as 'traumatic' (as there was no escape from it) causing her to dissociate and prefer to live in a fantasy world where her ability to create persona's/alters to cope with the daily demands of the outside world developed from a young age.


What you described in the above paragraph alone sounds just like DID or OSDD1b. There are other things you've said that give me the impression that you have a true dissociative disorder, such as the fact that your "personas" were created for specific purposes. This is true with DID. I once heard of a DID system with a teacher alter who formed when they had a teaching job. Each DID alter has a purpose, just as you do.

I must also state that there is no such thing as "traditional DID". I don't know what you think DID is, but I've read nothing to point to the conclusion that you don't have DID, but much to say that you do. Again, I cannot diagnose you, that is the work of a qualified psychologist. However,I think you owe it to yourself to know for sure if you have DID or not.

Lastly, I understand if you are not willing to accept the idea of having DID. The world is full of horrible misconceptions about DID that don't hold a candle to the truth. Ideally, DID is not even a disorder, it is a coping mechanism that allows trauma victims to live a happy, normal life. There is nothing wrong with having DID. It is just one way to get along in this crazy, chaotic world we live in.

- Marcella
We are the Neighborhood, a large, co-conscious DID system.
Outsiders:
Imre ("EEM-ruh") - male, 20s, compassionate
Cullen - male, 13, loves life
Marcella - female, 30s, zesty
Pip - male, 12, happy

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Re: New Recent Research as really helped me understand myself!

Postby KitMcDaydream » Mon Jan 14, 2019 11:13 am

Hi

I think what was meant by 'traditional DID' is simply the fact that from what we have seen on TV (there was a program about it on TV last year) and from what 'most' people on here have described (on going on people's signatures showing the with multiples names within their system) ours is not like that.

The memory/amnesia issue works differently for us... eg even though I (Sioux) wasn't around when Thea and Maddie were 'up front' Kit has access to their memories and can share them with me. Kit appears to be the 'core' or original self (not sure of the official term) and was the one originally born into the body. The role of whatever alter has been up front seems to be 'to help Kit get through life'

Each alter was only up on their own it was them dealing with life and Kit when they were alone.

Our Autism diagnosis was late in life (late twenties after a meltdown coping with university and life pressures) so it was assumed that was why Kit was 'like she was', our understanding of DID and the OSDD1b has only come about very recently, we don't have an official diagnosis of this and we've never been 100% sure if its there or which elements are the autism and which are the DID.

We'd read that people with autism had a strong tendency to dissociate anyway so therefore it could have just simply been that too? The menopause starting has also re-triggered some of the extreme sensitivities Kit had as a child (and had orginally learnt to deal with) ... sounds and physical contact been her most intense as well as severe mood swings and anxiety. Her moods and feelings are so intense at times (seem to coincide with what 'time of the month' the physical body is at too) that even when I'm upfront dealing with something for her it's triggering anxiety in me, so 'we' as a system are struggling at the minute to even get through basic life events (like having to make phone calls to sort things out or attend appointments).


Sioux


p.s it seems Kit has decided even if there are elements of DID mixed in with her autism she doesn't wish to through the procedure to get a confirmed diagnosis on it.
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Re: New Recent Research as really helped me understand myself!

Postby Truly_happy » Mon Jan 14, 2019 9:03 pm

Sioux,

Let me be very clear with you: The fact that autistics dissociate more than others gives you MORE reason to have a dissociative dissorder, not less. Please do not tell people that they may not have DID just because they are autistic if you have no proof that you yourself do not have DID. This could be very damaging to a lot of people to throw their DX into doubt as DID is not like any other disorder and has a very specific treatment plan.

You cannot treat something as complex as DID as if it were just a trait of autism. Based on my experience with the online DID community (which goes back a few years), I would say many people with DID are also autistic. I may not have much experience with the autism community (I was diagnosed less than a year ago), but I would never assume that all autistics have anything that remotely resembles DID as it is still considered to be rare. Maybe you can live happily without a confirmed DX of DID, but many others cannot. It is especially bad to cause others to doubt that they have DID because it is such a hard DX to come to terms with. There are many hosts waiting for any excuse to say they don't have DID because they think it is such a horrible DX, and that is very damaging to a system, a person.

As for your amnesia, mine is not "normal" for a DID system, either. I have a very hard time explaining my experience to other systems, but it does not sound unlike yours. We have two areas in our mind: one stores the normal, healthy memories and information for "outside" life, the other is for traumatic memories and events that happen in our "inner world". For example, I, Marcella, have no idea what happened when I last went into the inner world to be with my husband and children, but I do know what went on in the outside world while I was not present. Likewise, Imre and Cullen remember things that happened long before they formed. Imre often talks about those events as if he experienced them himself, when I know he could not have; the memories are just that clear to him. We often don't know our own names when we come to the Front, but we always know the legal name, despite the fact that no one claims it as their own. These things are not normal at all with DID, yet we have the formal DX.

As for not seeking a DX, that is okay, just don't give others reason to doubt lest it causes them harm, okay?

Sorry to be long-winded and harsh, but it bugs me when I see someone giving DID systems potentially false information that could lead them to fall into denial. As a person with autism, I don't know how to put this stuff any other way.

- Marcella
We are the Neighborhood, a large, co-conscious DID system.
Outsiders:
Imre ("EEM-ruh") - male, 20s, compassionate
Cullen - male, 13, loves life
Marcella - female, 30s, zesty
Pip - male, 12, happy

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Re: New Recent Research as really helped me understand myself!

Postby KitMcDaydream » Tue Jan 15, 2019 12:38 pm

WHERE in my last post did I say that OTHER PEOPLE with autism won't have DID because the dissociation was probably just part of the autism?

I was saying it was 'we' as a system who had assumed that about ours, as we only had a diagnosis of autism we were not online at the time of dx - around 1998, so only knew about autism what the psychologist had told us and what we had seen in meeting other people with autism all of who seemed to have some degree of learning disability too (we had met them through working at various care homes/day centres as an assistant)

As I said we have only just come across DID/OSDD very recently by accident as Kit had originally come on this board to ask about something else and have just begun to realise ourselves that what we thought was 'just part of our autism', could in fact be a separate condition!

The body has some physical issues too, some of which seemed particular to one alter, so we're also trying to sort which issues the actual physical body has regardless of who is up front and which issues only seem present when a particular alter is up front as we also never previously saw this as a 'seperate thing' that could be related to DID.

eg it was thought our neurological condition was episodic and something was triggering 'attacks' of it, we totally missed the connection that some symptoms vanished when Kit was more active around the house and took over more from Maddie. When Maddie came up front the body was more physically disabled, but in denial about the autism. (none of our neighbours here know we have autism)

In Kit's teens/20's Thea was 'profoundly deaf' so Kit could block the sensory overload that sounds in the environment triggered (anything ..noisy traffic, pneumatic drills, photocopy machines, just lots of people talking in a canteen etc), our medical records show the deafness was caused by Hypothyroidism and is a sensory-neural loss that fluctuates due to thyroid levels and how mild or severe the Tinnitus is and that is what everyone (including Thea) believed we had at the time. We didn't know of 'Auditory Processing Disorder' back then, which would have also explained why we could not work out what sounds were/where they were coming from and struggled to understand speech in particular...again this is something we've only come to realise in the last year or so when a change in thyroid meds has altered/improved some symptoms over time.

The menopause has triggered new symptoms so we find ourselves experiencing something of a 'mid life crisis' and trying to rediscover who we are and what we can and can't physically do now, our likes and dislikes and 'taste' in things has changed completely including in people involved in past alters lives (as their 'friends)....plus trying to make sense of online info on how menopause can affect autistic women and make some 'sensitivities' more intense again and of course trying to make sense of whether we may actually have DID on top of everything else!
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