Feeling lost and alone, even within the ASD community

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kkyndall2
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28 Aug 2022, 2:24 am

I still cannot help but feel lost post-diagnosis. I know autism is a spectrum, and on my last post I was relieved to hear that not all autistic people experience dyssemia (or difficulty with non-verbal communication). My main reason for believing I couldn't possibly be autistic was because I could easily read cues and understand the feelings of others without more conscious effort. Sometimes a bit of conscious effort is needed, but not to the degree some other autistic people might require.

I just cannot help but feel lost. Where to next? I got a therapist, and the support of family and my boyfriend, however, I still feel really lost. There are things that resonate with me in regards to autism and other things I find very NT of me (like reading social cues and body language well for example). I feel like I'm too neurotypical for the ASD community and too autistic for the NT population. I have traits, yes, but I have doubts and I get paranoid it's because of another issue or perhaps a personality trait.

I feel NT in the sense of being able to read others well intuitively, getting metaphors, sarcasm, and abstract thinking, and understanding social conventions, including some complex ones. In other ways, I feel like I qualify as ND... like stimming, special interests in the past, social struggles (disinterest in social interaction, not knowing how to interact with others without feeling like I'm putting on an act, mild sensory issues, little to no eye contact (compromising by looking between the eyes or at the nose and mouth), and lack of engaging or initiating in conversation.

I see so many other autistic people discuss their social issues with cues and social conventions, yet I have little to no struggle with them. I am in fact hyperaware of them at times. I am very conscious of social things and any time something feels out of line I get uncomfortable. I'm good at noticing a microexpression and I am highly empathetic, which is possibly what contributes to this ability.

Are there any others like me? If so, where can I find them? Is it common for some autistic folks to not experience dyssemia? Or are maybe super aware of social conventions and rules to a strong degree?



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28 Aug 2022, 3:37 am

Yes , I think there are a number of people on here that seem like that but are not always aware of it .
You can see it in some on the writings on the forums . I do think that some Aspies develop work around almost unconsciously , especially , people higher on the Spectrum, Hmm. And then there are those who do not ..
And they are also represented here , I think . And obviously varying degrees , across the Spectrum .
Especially after a diagnosis .. Am thinking some people wonder where the rabbit hole ,,that is Autism might lead them ..?


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28 Aug 2022, 4:34 am

I might be.
I don't declare myself to have dyssemia or one of those socially awkward types, or one of those types who wanted to be 'human' so badly...
Doesn't stop that me and the cultures I'm stuck with don't resonate.

I also don't give a damn how socially aware I'm or not.

There are simply some things I could never able to mask and it has nothing to do with behaviors.


I don't complain about not knowing social conventions, emotions, and interaction in general.
Instead, yes, I'm also just disinterested and basically just don't pay attention.
Even if I don't pay attention enough, even without the subconscious habit of looking at people's eyes and interpret stuff, I still catch something.

At worst, I'm just too overwhelmed to actually process situations and context in any detail (social or not), whether or not I'm aware of that layer of lack of awareness, let alone "perform" socially.

My main source of social issues is mainly executive functioning (whether as average performance or as a compensation) than whatever those with social communication disorders usually has.

.. It's like mistaking my poor memory retrieval, when performing/processing poorly with being able to recall people with prosopagnosia, really.

Whether I can or cannot read others, it doesn't necessarily mean I'd know what to do with that.
And even if I do know what to do with it, that doesn't mean I can perform it right and appropriate acts definitely doesn't feel sincere in general.

I can pass naturally, and that's just more than enough for me. Why need to mask and do it further without any desire to?
Especially with the inconsistency in performance and capacity to process.

My main complaints are mainly to do with regulation and verbal abilities than social situations and anxieties around that.


Anyways.
I don't feel lost and alone myself.
I already accepted a lot of things that I cannot relate nor resonate around autistics and around humans of any group or community in general.

But that's because I learnt distrust, disappointment and helplessness in others' too soon.

A spectrum indeed.

And yes, I'm sure there is very much such thing as autistics without dyssemia.
I had wondered what are the odds autistics are such, amongst with other commonly (and lack of thereof) relatable (unrelatable) traits mentioned.


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Siddiq_Sultan
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17 Sep 2022, 9:50 am

For me it's not the lack of understanding social cues, I just don't click with orher people properly. And it is so much easier to communicate via words because the other way it is this werid tribal mentality thing that I can't not overthink, like why and how something is constructed. Like it is all just a inertia and the social construct, unwritten contracts are just weird. I mean I never feel like I belong anywhere, I always feel like an impostor, strage men in a strange world. Feeling of not belonging anywhere is with me from my early childhood. Other people always seemed so natural and organic at being a part of everything, groups, instititions, bigger systems, society), but I always preferred to just watch from aside. I don't feel like I belong anywhere, like it's my home. I still have my comfort zone that I call home, but anything just becomes meaningles as you start analysing it. I mean some purring cat, smell after rain, warm cocoa, some laughter still can be good, but I still feel kinda far away from it, there is always invisible barier and silent indifferent observer of it all.



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18 Sep 2022, 8:40 am

I haven't felt any great sense of belonging to any group since the hippie movement and socialism fell apart decades ago. And these days even when I'm with people I don't get much out of the experience. Some have likened the Aspie experience to having a "glass wall" between them and the rest of society - we can see them but something is in the way of relating to them. That idea resonates with me. My social skills aren't bad if the group is anything like a reasonable match for me, but it often feels like a tedious mechanical process I'm using to get by. Naturally I've got a lot of sympathy with other Aspies, but I've got my special interests and they've got theirs, so we're not likely to be able to share much on that level.

One possible thing that may help is to work with people, rather than just spending leisure time with them where it's all about "pure" socialising. Something seems to happen when I join in with people to work towards a common goal. If our project is successful I can feel very much as if we belong together. But it has to be a group (or individual) that has a good commitment to equality. One domineering person can take all the fun out of it.



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18 Sep 2022, 1:14 pm

Dyssemia is not a term that I came across before. Hmmmmmm.

Dyssemia is a difficulty with receptive and/or expressive nonverbal communication. Dyssemic persons exhibit difficulties with the acquisition and use of nonverbal cues in interpersonal relationships. "A classic set of studies by Albert Mehrabian showed that in face-to-face interactions, 55 percent of the emotional meaning of a message is expressed through facial, postural, and gestural means, and 38 percent of the emotional meaning is transmitted through the tone of voice. Only seven percent of the emotional meaning is actually expressed with words."

This may be one of the differences between male and female in the world of Aspies. I am a male and I do not try to fit in. I just live the life that I think is the right way to go. I have no eye-to-eye contact. I just look of a little to the side when in conversation. As a result most NTs can see me with less than a second. I believe that the problem you are trying to understand may be more prevalent in females, especially because they try to fit in.

What happens many times is that trying to mirror others can be difficult and long term may lead to some chaos. This seems to happen at around age 30 and beyond. It can cause a lot of stress around that timeframe.

I have found an interesting way of testing the effects of eye to eye contact. There are special glasses that you can buy that allow light to flow freely into your eyes but prevent light from being reflected out. I wore these glasses many times when I was up and about. It produced profound results. It was almost like I became an NT. People would come up to me on the streets, a total stranger, and begin conversations. It was almost like becoming normal.


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18 Sep 2022, 1:45 pm

My goodness...to the OP: Yes, your post resonates with me, and I even posted the exact same issue a few months ago: I don't feel "autistic enough" despite a formal diagnosis. Ways I feel NT among autistics: Good eye contact (doesn't creep me out or muddle up my thought processes in conversation), only two meltdowns in my entire life (preschool and around age six, due to loud noise), no mutism, no eventual big burnout, excellent executive functioning, very self-sufficient, okay with bright lights and crowds (though i HATE how slowly crowds move, like a giant river of thick mud), and though I don't like change, I also handle it like a "mature adult." Why I feel autistic among NTs: Subtle sounds can distract me; Long-held eye contact uses up some conscious energy (I over-think it and it can be a little distracting), don't do small-talk; can't figure out pop culture; over-analyze, too serious, can't make friends (I don't even know how), a virgin even though I'm middle age, somewhat flat voice (not quite monotone), flat facial expression though that can change in an instant when recollecting something funny or talking about special interests), Special Interests, calm/cool/chilled in the face of crisis while NTs get emotional; I must plan things; highly resistant to trends, often take things literally, though I also get metaphors and can detect third-party sarcasm, Stim, Stim and More Stimming.

And how do you KNOW you get social cues? You might think you got one but are incorrect and will never know it unless it's pointed out. Also, abstract reasoning isn't an exclusive NT trait. Autistics excel at pattern recognition, and pattern recognition requires abstract reasoning.



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18 Sep 2022, 2:45 pm

Never knew the term dysemmia? If I spelled it right ? But clearly recognized it as it occurred as I grew .
Realized eventually it was important in masking . And other things that NTs use in their interactions , intonation
Other things , that are like virtue signals . Hard not to consider it as BS , but after years and years started
To be able to mimick things mechanically. And sped to realize it was all circumstantial. Awe crud …. That was kinda bs too. But analysis of interaction based on some words by others in a convo,were intended for an effect .
It was like a play , call and response , like in music sometimes . And if not stressed could perform well ? Uhm
Sometimes. Beware .. ! I think some psychopaths are hip to this and will set people up for falls great or small .
By creating unusually stressful environments to destroy another’s ability to process stuff . Especially people they consider prey . :skull:
But on happier note if all parties are trying to be civil, sometimes following the play of NT interaction can be fun. :jester:
Not necessarily logical but some entertainment can be derived if one is observant and can play a part well
( ie. masking) even can be helpful in politely but quietly pointing out obvious faux pax.* very cautiously.
(* usually little to zero stress environment)


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jared11235
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18 Sep 2022, 7:10 pm

jimmy m wrote:
Dyssemia is not a term that I came across before. Hmmmmmm.
Dyssemia is a difficulty with receptive and/or expressive nonverbal communication. Dyssemic persons exhibit difficulties with the acquisition and use of nonverbal cues in interpersonal relationships. "A classic set of studies by Albert Mehrabian showed that in face-to-face interactions, 55 percent of the emotional meaning of a message is expressed through facial, postural, and gestural means, and 38 percent of the emotional meaning is transmitted through the tone of voice. Only seven percent of the emotional meaning is actually expressed with words."


I've never heard of dyssemia before either. This could explain my adversion to text messages. I hate SMS/text messages and could never understand why so many people use them so much. With dyssemia in mind, text messages throw away 93% of the data that I need to understand people. If you learn something new every day, I guess dyssemia is my thing for today.



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18 Sep 2022, 11:53 pm

I have also questioned myself for the following things:

Memorizing social rules and being able to follow them

Not saying things I full well know are offensive and rude and may offend and I don't get exhausted for using my filter.

No autistic burnouts

Being able to change my stims to not draw attention or to annoy others with it because they make sounds.

I am truly high functioning and everyone keeps acting like I don't exist. I do not have low functioning moments. I can live on my own, go to places on my own, I don't need a caretaker, I can clean my house and keep it from getting too messy.

I do not have a photographic memory

No I don't know every single important date in my life.

I'm not a little professor and I don't info dump.

I do not find my interests more important than my friends and my family.

I do not assume bad intentions in people by thinking they are trying to make fun of me or bully me.

I never got exhausted by copying other kids and doing school behavior. Ironically this is what lead me to a diagnosis.


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Last edited by League_Girl on 19 Sep 2022, 2:07 am, edited 1 time in total.

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19 Sep 2022, 12:32 am

Quote:
Memorizing social rules and being able to follow them

I don't have to memorize social rules either. What I do have to memorize are other rules, like health and safety rules, but general interacting with people isn't hard.

Quote:
Not saying things I full well know are offensive and rude and may offend and I don't get exhausted for using my filter.

I know some people here don't think so, I do actually have good social filters offline. Despite my impulsivity, I can actually hold a conversation without accidentally offending people. The only impulsive social flaw I have is saying silly things that make me sound like I'm daft, but I know that it is daft but sometimes I just have to say it.

Quote:
No autistic burnouts

I still don't know what those are. Apparently they last for years, which isn't in my case. I have little short-lived episodes of depression if I'm under too much stress but I know NTs with depression who have the same thing so I don't put it down to autism. (Some NTs get signed off work from the doctor if they're under stress or have depression, because they can't always face the world).

Quote:
Being able to change my stims to not draw attention or to annoy others with it because they make sounds.

I don't do hand-flapping or rocking even when alone. I do socially acceptable stims but not particularly due to sensory issues. It's more due to being unable to sit still.

Quote:
I am truly high functioning and everyone keeps acting like I don't exist. I do not have low functioning moments. I can live on my own, go to places on my own, I don't need a caretaker, I can clean my house and keep it from getting too messy
.
I don't really have low-functioning moments either. Even if I'm feeling at my most depressed, I can still communicate my feelings and my social skills don't change. I've attended a social gathering when having one of my depressed moments before and it actually made me feel better.

Quote:
I do not have a photographic memory

My memory is only good at remembering past events of my life (autobiographical) and people's faces and birthdays.

Quote:
No I don't know every single important date in my life.

I may be good at storing lots of memories from about 3 years old to yesterday, but I can't remember exact dates things happened. I can only remember the year or maybe the season.

Quote:
I'm not a little professor and I don't info dump
.
I've never been a little professor, even as a child. When I was a child I was silly, hyperactive, tantrum-prone, inattentive, hated learning, and liked running around and climbing and being silly.

Quote:
I do not find my interests more important than my friends and my family.

As a teenager I got intense obsessions with certain people that I did put before anything else but that was more down to impulsive urges that were difficult to control. Since I've been with my boyfriend I haven't had any obsessions. They're too exhausting.

Quote:
I do not assume bad intentions in people by asymong they are trying to make fun of me or bully me.

I do assume bad intentions in strangers, I think they're staring at me and scrutinizing my every move and judging me, but this is due to bad past experiences with bullies and social anxiety.

Quote:
I never got exhausted by copying other kids and doing school behavior. Ironically this is what lead me to a diagnosis.

At school I didn't have to mask much when socially interacting with other children. But I had to mask my ADHD, I didn't want to draw attention to myself in class or get into trouble so I had to consciously be well-behaved and quiet all day (except at recess), and even force myself to sit still. I was usually extremely hyper after getting home from school and sometimes resulted in being naughty for my parents. But I wasn't exhausted as such, as I would often go back out to play with other children in the neighbourhood and I loved it when other children came back to mine for tea, like my cousins.

So I don't know how I got a diagnosis either. I showed more ADHD than autism but I never got diagnosed with ADHD until adulthood.


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19 Sep 2022, 1:17 am

I never had trouble interpreting other people’s feelings but I often have no idea why they feel the way they do.
Also, it’s not that I fail to feel, see, or know when something is wrong but it’s more about my manner of being that makes people not want to connect in any meaningful way.
I know when people are mocking me, being unkind in some way, or being condescending- it happens often enough.

Example - I was having a conversation with an acquaintance. She is going through a rough time due to serious family issues and she mentioned she didn’t have someone to let her dogs out one day when she had to travel all day. I said I’d be happy to help. She was very startled/surprised. She and I were somewhat friendly so I’m not at all sure why my sincere offer of help would be so unusual.
I said just let me know when she needed the help but she never let me know.



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19 Sep 2022, 8:27 am

When you get targeted So much , for such big things , regarding your life .And cheated robbed by even close relatives , Losing a hubby to homicide / murder by the same people and the very people you go to for help .
It becomes almost beyond belief . So tending not to want to be around a lot of people becomes a issue .
But had even developed some masking skills did not help . So being alone has become a normal thing .
Have had people offer help , that I could not bring myself to trust for help . Had to learn self reliance . If I wished to survive . It has amazed even me several times over long periods of my life that I have survived .
But always think have been able to remain true to what are my values . :D


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22 Sep 2022, 1:02 pm

I am not diagnosed but I feel quite certain that I am on the spectrum. I'm in my late 50s and first suspected it in the late 90s when I read a book review and then the book itself. But there was nothing to be done, no specialists I could find, and even more recently, about 12 years ago, I went to a highly respected specialist and instead of giving me a diagnosis, which I paid for, she offered neither a yes nor a no, but she did say that my ability to interact with people, not so much externally, where I can come off as reasonably not unusual, but internally, where I just don't understand what people want or how they feel about me trying to talk to them or if I were to call and reach out to them whether they would welcome it or find it an imposition, is the worst she had seen. All of that is hidden to me.

So in a sense I am in the opposite position of the OP. I don't have many ASD traits, like stimming or needing routine, or being overly bothered by noise and crowds, but people are a mystery to me. And my aloneness is profound. So much so that I can't tolerate it and am finding it very difficult to cope day to day alone. There is one person I talk to by phone and another by email. Other than that there are friendly acquaintances, but contacting them or even just going to events where they might be is so stressful. I really need a partner who is my constant companion and I have had that before and it was heaven.

And yet there is a local ASD group (mainly online though they are considering in-person meetings) and I feel completely out of place because I appear to be NT, so I feel like an impostor, and really can't relate to the concerns I see people bringing up in the online group.

I'm not sure if I have a point. Sorry for just going on about myself. Maybe I'll start another post asking for help.



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22 Sep 2022, 3:11 pm

It takes time to integrate a dx. Remember, most people prior to dx have lived a life unconsciously over-compensating for something they never could put a name to. Integration takes time and lots of self care and love.

15 years on from my dx I no longer feel in limbo, or in that liminal place. I too am very intuitive and read body language well, which is just as well as I am an Alexander Technique teacher and Spiritual Director. However, I have overwhelming sensory issues, severe problems with executive function, planing, prioritising etc and completely out of my depth in social situations. I am very inflexible with re routines and have all consuming special interests without which my life would be meaningless.

Whilst I can read body language well, my ability to communicate non verbally is very poor. Such lack of congerance is very upsetting for me as at times I have to act out a genuinely felt emotion in order for others to really get me.

I became a writer in order to comunicate my deeply felt experiences, but the more articulate I became, the more people felt I was NT.

It is also my view that the more right brained dominant someone is on the spectrum, the more creative they will be with respect to adaptive skills, this might be a factor for you.

Wishing you well from London.



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23 Sep 2022, 6:00 am

What Quaker said, it takes time! Don't punish yourself or blame yourself. Do your best self care as you sort it all out. Everything looks different once we know about our autism. It can change everything we believe about our past, other people, ourselves.. that is a lot to digest!


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