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Featured Forever "coming to?"

Discussion in 'General Autism Discussion' started by Warmheart, Mar 13, 2017.

  1. Warmheart

    Warmheart Something nerdy this way comes Staff Member V.I.P Member

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    I spend much time involuntarily held in my autistic inner world. For me, it is a powerful, dominant, default state, which I struggle to remain clear of long enough to use a sharp knife, crisis a street, go potty by myself. Many times during when I am trying to do something (like write a forum post--Ha!), my inner world will snatch me away. Eventually, I fight to come clear... to see my toast is by then burnt, or the person I was in conversation with is glaring, annoyed.

    Imagine if you forget what you are doing... as you are doing it.
    Paying attention long enough to use a sharp knife is risky, and being in the real world is
    Ike a. Us le I try to flex.. but it doesn't last long before inner world snatches me away again.

    Anyway, I spend my entire life constantly "coming to"--- like waking up after surgery, or like when you went to the bathroom during the commercial break and do. der what you missed of your TV show.

    I get panicky as several times during a bus ride, or in a car ride with a friend or support staf, I suddenly am aware... each time thinking:
    Where am I?
    Who am I with?
    Where am I going?

    Or,...
    How long have I been standing in the shower like this, the water's cold...
    How long have I been on the bus? I think i missed my Stop a long time ago...

    People get cross at me a lot for what they think is voluntary "daydreaming."

    After EEGs, it isn't seizures, just my autism.

    This has been my whole life, an interrupted, fragmented awareness. Unlike NTs who may just gave a strong imagination, this is involuntary, and snatches my awareness away from the flow and narrative of my life. Yes, it puts me at risk sometimes.

    My whole life seems to be many moments each day of "coming to," feeling immediately anxious, wondering "Where am I?" I have sort of made peace with this the best I can. It's just st my autism, my neurology.

    Has anyone else experienced this sort of thing? Any good ideas for safety?
     
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  2. orphan

    orphan Member

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    I relate... we are not alone!

    To offset this I tend to be hyper aware. Let my mind run on... but let my instincts run things on auto pilot. Also purposely stim/stop repeat to remain "in the boat".

    I try to time my wandering during a safe time. Golfing alone, watching a movie.. why bother? Rarely make it through.

    I like to be "away". For me to function, I really have to give myself time everyday to do that... or it happens by itself.

    Good luck with it, interested to read more on this. Thanks.
     
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  3. Ambi

    Ambi Well-Known Member

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    Wow - no, I do not experience that to such an intense level. I am sorry for your difficulties, and I hope someone has some good advice. I appreciate reading your description of this, though. I do feel "snatched away" by my inner world quite frequently, but my basic safety is not impacted. I just come off as spacey and ineffectual.
     
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  4. Mia

    Mia Well-Known Member V.I.P Member

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    Become hyper-aware, but then crash when I'm home. A lifetime of working since I was young has created the constant sensory overload damage. More and more these periods of forgotten or foggy time, are becoming more frequent.

    When I do several tasks in a day, I have to do one and finish it, as very often I become distracted and never get back to it, unless I come across it incomplete at some point. This might be aging, or the beginnings of alzhemiers, (which my mother has) or the constant neuro-net stimulation of a lifetime. And it could be all those things, and others I'm unaware of. Spouse is becoming similar as well, but so far nothing that's prevented either of us from fully living our lives.

    The more I think about this, the more I would consider something non-invasive like neural stimulation with a laser emitting helmet. There is a technique used on people with ptsd, and a similar one for brain damage from strokes and accidents. Leads me to wonder if it might work on autism. If anything it might be in the early stages for use with war veterans. Don't know much about it, as it seems they are in the process of studies on this.
    Shining light on the head: Photobiomodulation for brain disorders

    Not much is known about the neurobiology of depersonalization disorder; however, there is converging evidence that the prefrontal cortex may inhibit neural circuits that normally form the substrate of emotional experience.[21] A PET scan found functional abnormalities in the visual, auditory, and somatosensory cortex, as well as in areas responsible for an integrated body schema.[22] In an fMRI study of DPD patients, emotionally aversive scenes activated the right ventral prefrontal cortex. Participants demonstrated a reduced neural response in emotion-sensitive regions, as well as an increased response in regions associated with emotional regulation.[23] In a similar test of emotional memory, depersonalization disorder patients did not process emotionally salient material in the same way as did healthy controls.[24] In a test of skin conductance responses to unpleasant stimuli, the subjects showed a selective inhibitory mechanism on emotional processing.[25]

    Depersonalization disorder may be associated with dysregulation of the hypothalamic-pituitary-adrenal axis, the area of the brain involved in the "fight-or-flight" response. Patients demonstrate abnormal cortisol levels and basal activity. Studies found that patients with DPD could be distinguished from patients with clinical depression and posttraumatic stress disorder.[26][27]

    The symptoms are sometimes described by those with neurological diseases, such as amyotrophic lateral sclerosis, Alzheimer's, multiple sclerosis (MS), neuroborreliosis (Lyme disease), etc., that directly affect brain tissue.
    Depersonalization disorder - Wikipedia
     
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  5. OkRad

    OkRad Well-Known Member

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    I do not have that at such a level. I fight to go BACK into the inner world. It is snatched away all the time by a stupid song at the supermarket or someone prying into my life or etc. etc. etc.

    But what you are describing is very strong. I am glad they did an EEG to rule anything out!!
     
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  6. Suzanne

    Suzanne Well-Known Member

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    Hi there, warmheart.

    I have this mildly. It doesn't constantly happen and when it does, it takes me a few seconds to realise I have "disappeared" and quickly return.

    I think that is one reason, I go around hyperaware of myself, which is partially why also social anxiety grips me. I feel if I am not alert, then that "disappearance" comes to say hello to me.

    Yes, very scary. I hate it.

    And yes, I get that too ie where am I? I think I am in the wrong place.

    Just last week, my panic reared as a receptionist said that my husband had to wait for me. Even worse when I was told where to go. Because it is all in French, for once I repeated what she said and got a smile and nod.

    I sensed myself breathing and kept muttering the number and with such relief, found it and the intercom she mentioned. Happily, it was one where you use your hand and amazingly, the door opens ( never happens to me) and found myself in a short corridor with just white doors on either side and immediately was once again gripped with fear: which door? I decided to take the plunge and opened a door and was confronted by a room that had cubacles in them and saw that is the area where people get ready to be taken for an operation etc. I am thinking: am I in the right place? All I am having done is a local to remove part of a tooth that a stupid dentist had not completely removed! I sat down in a heap and feeling very bewhilered and imagined about an hour later, finding I was in the wrong room! I waited and waited and no one came to me; I had expected to sit for a second and then be called it. So, I texted my husband and asked him if he would confirm with the receptionist that I was in the right area and he did and apparently I was!

    Then an elderly chap entered, but with a surgeon assistant and again, I start to panic. Why him and not me? The guy was told to go and put on hospital wear and when he came to sit next to me, I suddenly found myself NEEDING to interact and eventually it was established that I was in the right area.

    It was 30 minutes more, when a woman appeared in the door opposite me and called my name and then said with surprise: why are you not wearing these ie the hospital clothes? I told her that I was not told to put them on and since it is just for one tooth, I figured that I didn't need to. She looked at me with: of course you were told; you just did not understand! I tried to insist, but was told to go and put them on. I was also asked if I had my xrays on me? I didn't and thankfully it was not insisted on. Don't trust dentists. I changed and waited and then, ordered to lie on this hospital bed and all the while thinking: it is for a broken tooth! What is going on here?

    The final thing was that it went amazingly well. The "surgeon" was extremely kind to me and when I said that he was tugging on my mouth too much, he listened and was more gentle. I thought: Suzanne, you have had 3 teeth removed in succession ( due to acid erosion) and they were cruel to you; this is one broken tooth and he is not, so breath and talk to your God. Then next minute, it was over.

    Oh before they started they put a sheet over my face with a hole for my mouth. Sounds so funny, but in truth, I went into panic ( quietly). I quickly ascertained it was due to the brightness of the light that was needed to look into my mouth.

    I feel utterly demoralised to go through all that; whereas the average person just gets on with it. I am also trying to not compare myself ( so hard to not do).
     
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  7. toothless

    toothless this is mr shadow,my support cat V.I.P Member

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    i relate very much warmheart,i have to fight my own world continuously if i am to do anything in reality,trouble is my brain prefers my own world where everything in reality is irrelevant and part of the background to me.
    i dont have a problem with it as i am used to my life and its my safety net,its other people who see it as a problem.
     
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  8. Warmheart

    Warmheart Something nerdy this way comes Staff Member V.I.P Member

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    Toothless, I was hoping you'd add your input here, thank you!
    I usually feel pretty alone in this. I'm grateful for your time that your responded. Thank you!
     
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  9. Ylva

    Ylva Well-Known Member V.I.P Member

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    It happens. As a child I was glad it happened (and tried to make it happen often) because time disappears, and that makes the schooldays shorter.

    One thing about sensory processing disorder: it sure forces you to be present to your senses.

    On the other hand, this zoning out might just be the other side of that. It is energy saving. Because my nervous system does more work than regular nervous systems (for whom the civilized world is built and adapted), but it doesn't really have more power alotted to it.

    So by way of advice/suggestions: mindfulness meditation is suboptimal, at least for me, but taking a minute (literally a minute on the clock) every morning to gather my awareness and be present to my senses seems to help. It's kinda like actively listening to my senses.
     
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  10. toothless

    toothless this is mr shadow,my support cat V.I.P Member

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    absolutely no problem @Warmheart i relate to you a lot,so im not surprised we share this aspect of autism to.
    also i want to add,you are the inspiration for my idea for my speech to all my support staff on world autism awareness day,your last speech to the YMCA made me think of doing my own talk,quite a few staff who i wanted to talk to said theyre not in on the 2nd of april so ive said ill get someone to film it...hopefully,if not ill just use my craptop like i do with all my videos.
     
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  11. Warmheart

    Warmheart Something nerdy this way comes Staff Member V.I.P Member

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    Toothless, thank you for your kind complement. I love your work! I'm looking forward to your upcoming speech video!
     
  12. toothless

    toothless this is mr shadow,my support cat V.I.P Member

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    hi warmheart,id love to see more videos of yours! have you got any planned?
    and i shall be sticking the autism talk on youtube so anyone can view it,not just staff.
     
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  13. Warmheart

    Warmheart Something nerdy this way comes Staff Member V.I.P Member

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    Toothless, I've no other videos just yet, but I am really very much looking forward to seeing yours on YouTube. Thank you for making it available! You are wonderful! :)
     
  14. Judge

    Judge Well-Known Member

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    This subject continues to concern me. I still wonder about other mental states perhaps "in between" those of consciousness.

    Though in my own case, whatever it is or is called seems to only occur in part in a shutdown. Which also leaves me wondering if it may simply be another way of the body and mind creating some kind of "defense". Or an "energy saver" as Ylva posted. I don't really know. :confused:

    I suppose in my case it all comes down to just how much time I actually "lose" or simply cannot fully account for. Very confusing. With different triggers I suppose compared to things like sleep-walking, which I've seen before.
     
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  15. Warmheart

    Warmheart Something nerdy this way comes Staff Member V.I.P Member

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    Well-said, Judge. I also agree with Yiva.

    I think with my fragile, reactive neurology, I'll always be in one degree of shutdown or another.

    The tendency to be snatched away involuntarily into the dominant default state of autistic Inner World-- and held there-- seems to come standard with my wiring.

    Yes, it gets stronger when the shutdown gets deeper, like during the overwhelm of the K-12 school years shutdown, or during adulthood, enduring the emotional dysregulation tsunamis following a loss of some kind.

    Stranger still is the fogged-out torpor state of deep agitated shutdown from which wandering/elopement happens. It feels a heavy-limbed, walking-without-true-consciousness torpor.

    Maybe the weirdest state is autistic Catalonia, a shutdown where I am suddenly stuck, frozen in place, mute. Super creepy when in a public situation, very vulnerable. Can't move a muscle. Seems to happen during or following transitions for me, like sometimes after I get in my support staff's car. I'm frozen in place. Always so glad when that's over!
     
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  16. the_tortoise

    the_tortoise Active Member

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    I can relate.

    I get so lost in my own head or so focused on something, I completely lose track of where I am and what I'm doing and can be completely unaware of my surroundings. I'm forever struggling to keep track of everything.

    For me it seems to be a working memory/attention shifting/executive functioning problem combined with sensory processing disorder (my old OT thought I probably spent most of my life in at least partial shutdown due to sensory overload).
     
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  17. Aspie_rin

    Aspie_rin Well-Known Member

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    This was happening a lot when I was a kid (I remember some instances but others where told to me by my parents), now it mostly happens when I'm taking a walk, though thankfully I'm still sorta aware of my surroundings so it's not really dangerous. And, more or less rarely, I miss parts of what someone says, though It's not as bad as it used to be.

    I'm on ADHD meds (I was ''diagnosed'' with ADD but I think it's more aspergers) and it helps, even though I get nervous pretty easily now because of it, while I was pretty relaxed before...
     
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  18. Desiree W

    Desiree W Active Member

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    My mind wanders a lot. Before I figured out I was an Aspie, people would tell me I act as though I'm in my own little world. Even now, some people ask me was I listening to them? I heard them. It's especially an issue with people who are very very chatty. I "zone out" a lot though, whether I'm a lone or with others.
     
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  19. Joel's Hear

    Joel's Hear Member

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    To Warmheart: My grandfather received a football scholarship to Alabama. His son, my uncle Alan, received one to play for Auburn. My uncle suffered a severe concussion during his first spring training. The summer before the season was to commence, he headed to the beach to meet some friends, had some sort of recurrence of his injury, blacked out, and ran into a tractor trailer. Only he was injured; he died. Two years later, I was born. I have always been a very different sort of person: flapping my wings til that was discouraged, then ringing my hands, to feel the strange electricity flowing through me. I loved to read until three in the morning, pouring over the Chronicles of Narnia under my lamp fashioned out of an old Georgia Tech football helmet. I hated, absolutely abhorred elementary school. Wasn't necessarily beat up all the time (though it happened indeed), but nobody understood me; I was extremely autistic, and (I now believe fortunately) undiagnosed.

    I grew up to a pre-teen; my mother was diagnosed as schizophrenic; and I remained undiagnosed. My grandfather, a quite influential man in our rural southern city, dared anyone to breathe out the possibility that I was different. I, like Lt. Dan Taylor, had a destiny laid out before me: be a normal, football-playing teen that was popular albeit goofy. I certainly was goofy, and I certainly played football. Nobody really wanted to hang out with me (I was still considered really different), and I hung onto the veneer of normalcy only because my math and English teacher liked me and proclaimed that I was only different because I was so smart (college professors generally liked the gum on their shoe more than me). Sorry to ramble, but I do have a point, though I won't completely know what it is til the end.

    Still, I was failing my grandfather: I was ok at football (I drank white Zinfandel at night in the garage, lifting my uncle's old weights to get stronger) being considered a little better than average, my brain incapable of understanding strategies and rules, being told by a fake-friendly coach "go get that quarterback, STUPID!" Calling me stupid supposedly wasn't an insult, because I was supposedly so smart. I wasn't ever going to get a scholarship, though, and I wasn't hard wired enough to be cool. I tried partying and drinking, but I guess the little kid that flapped his wings isn't allowed to fit in, no matter what he does. Thank god, my kids think I'm cool.

    To the point, I tried half my life to fit into the mold of my uncle Alan. I would have done anything to be him, for the sake of my grandfather, who honestly missed his son so much. I tried for fifteen years to wire myself to be normal, popular albeit goofy, capable, not book smart but street smart, normal, normal, and normal. I tried to do this for my now deceased grandfather, who in some ways was one of the few people to ever really see me, know me, or love me (my grandma didn't care for me, though I can't blame her, and my mom wanted to, but couldn't because of her illness, my dad had left early.)

    Warmheart and other autistic-leaning members of the spectrum, now, to function while on the bus, cutting potatoes, meat, or fruit, or cooking or any other hardwired task, I can go into the little NT, uncle Alan brainchunk I built of "Normal, normal, capable, popular but goofy, normal, normal, goofy but not goofy enough to cut myself, normal, I used to play football?"

    My wife, known on the site as buzzerfly directed me to this post, and I created an account to write this to you, though I do like cutting potatoes more than filling out forms on computers!

    P.S. If anyone reads this please don't judge my grandfather. Though he did try to get me to act very strongly like something I'm not, he always secretly knew I had something special to me. The rural south isn't like the cities can be: it is NOT a melting pot. They can have grand hearts in the depths there, but being different can be dangerous.
     
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