Something I get which I don't know how to describe.

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Mountain Goat
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22 Jun 2019, 4:32 pm

If I join a group of people, I am made welcome and I tend to get on as I may slightly mask even though I may not know it... But to stay communicative I then put on a "Thick" mask where I use my humour to act thick. This is the perfect mask for me... But then after so long people may start to find out I am masking, and the fear of being found out makes me go all quiet and on edge. Somehow people may percieve this where I then become a target.
But usually this is the point I leave. In school or college it was real aweful as I couldn't leave, but in employment, it has been the case I find another job or I simply quit and leave. The railway aas my record as I did 9 years, but I did find that due to the ever changing staff (As the drivers I worked with due to different shifts... We would be together foe half a shift or a shift or two, but the shifts would change daily... Everyone had a different start time each day so the shifts were ever changing throught the clock as we went through the link. Due to this it took much longer before the stress of unmasking hit me. I never knew what was happeninb and why I did this though I did see the pattern. Often it wasn't that I felt in danger but I felt stale, and also stressed as I felt I had to move on before I reached the stage where I would be picked on as I was unmasked. (Not that I would be picked on in some jobs I did, but it was more of an automatic response where I felt so much pressure and fear that people would turn against me that even though at the time I disn't know this was going on in the back of my mind, I would have to find a way to leave. I would almost be (And I very nearly once carried it out not thinking straight under the pressure and the lack of sleep and fatigue etc) suicidal in my need to move on.

Now I also have a similar fear about a similar thing happening online. After my initial new member popularity I fear incase I overwelcome my stay as sometimes I repeat myself from many slightly different angles and variations of the same subject so I get a full definate multiangled conclusion from every aspect to hone in on the answer. It is a bit like a 3D scanner in question form... (If that makes sense). I do this automatically as it is how my mind gets more depth in any given subject I may latch onto. However rhe fear is that some may not fully understand this and take offence as they think in more direct ways. I hope this makes sense.
Having said that I do settle down and even if I go quiet, I usually get back to life again once the fear has gone and I feel I am safe to chat...

I was wondering if anyone else has similar patterns in life? I am thinking what I describe above that I could be on the autistic spectrum but I do not know and in a way I want to know but in another way I almost fear finding out it I am incase I then find I am but am then left alone to work things out in my life from there (If that makes sense) and I also fear an overburden-ness of care as if I am assumed to be incapeable of looking after myself in a mental way... Umm. Yes, cartain areas I rely on my Mum to assist in a relatively minor way where I find I may struggle, like sometimes the thought of filling in forms is a bit much, or sometimes going into certain shops... (The majority of shops I am fine in with no issues).
Anyway. Anyone relate to what I describe above?


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jimmy m
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22 Jun 2019, 4:52 pm

Mountain Goat, I think you are overthinking this. Remember you are in a home filled with Aspies. We are all strange and weird.



Mountain Goat
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22 Jun 2019, 5:00 pm

I can do strange and wierd well. :mrgreen:

I have been known to be normal too... Err... I think! Haha!


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Twilightprincess
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22 Jun 2019, 5:06 pm

We all probably repeat ourselves on here, frequently. It’s just how online forums are, especially for people with autism who have special interests.

It’s harder for me in real life because I feel like I have to mask and keeping that up gets really tiring. I just get overwhelmed by social situations.

As far as struggling and needing help with some daily activities in life, don’t forget to mention that during your assessment. It’s always important for them to hear anything related to problems with daily functioning.



Mountain Goat
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22 Jun 2019, 5:15 pm

The big struggle are the energy loss shut down things. They are annoying as when they happen I find they stop me or limit me doing physical things. Other times when I don't get them so much I am strong which gives the impression that there is nothing wrong with me.

Yes. I could do with writing down the issues just incase I forget, or I find I clam up. I don't often clam up, but it is better to be prepared. The other things I mentioned are not big issues... Small things really.


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JSBACH
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22 Jun 2019, 6:22 pm

Mountain Goat wrote:
The big struggle are the energy loss shut down things. They are annoying as when they happen I find they stop me or limit me doing physical things. Other times when I don't get them so much I am strong which gives the impression that there is nothing wrong with me.

Yes. I could do with writing down the issues just incase I forget, or I find I clam up. I don't often clam up, but it is better to be prepared. The other things I mentioned are not big issues... Small things really.


Mountain goat, I totally agree with Jimmy m his previous comment!! [Mountain Goat, I think you are overthinking this. Remember you are in a home filled with Aspies. We are all strange and weird.]

Personally, when I was young, I was unpopular because I was too different. After working out big time, practicing martial arts... I became more self confident. My mask was formed, and with lots of masking, I'm able to almost pass as normal. However this is not possible long term (huge drain on my energy resources).

I'm trying to drop my mask, because burning out because of the energy expense of passing has made me almost suicidal in the past.

Maybe we should stop masking?
Benefits are: it is a huge and powerful tool in the selection of REAL friends. (That accept you who you are).
Another benefit: no need to worry about acting as normal as possible?

Your self worth should not depend on what other people think about you! I understand the cycles you are going through and I think I understand what you're going through, I really relate to this!

Regarding what you wrote about your online appearance (in the first post), don't be afraid that you're repeating yourself. (You're in an autism forum...) I have read lots of your posts, and I consider your posts to be very informative, well written, and a useful contribution to the debates on this forum!


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Mountain Goat
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22 Jun 2019, 6:39 pm

Thank you JSBACH.
The energy loss situations I describe are partial shutdowns. I believe with me masking brings fatigue and feeling of being drained of energy rather then what I describe as an almost sudden energy loss which feels like a faint but is not a faint if that makes sense. I am still working things out as to what causes what... Is only recently I have realized where things fit in, as in the past a doctor insisted that all the symptoms I had were some sort of mystery allergy (Hence why I was trying with bery limited success for 25+ years to try to track mystery allergies. Sure, one or two things I avoid, but the symptoms they give me are different. The things I always thought I was alergic to when I finally last year after asking since I was 18 to have an allergy test I actually had a basic NHS 6 point test... I found I don't have the allergies I thought I had... Reading about partial shutdowns and the way I get the symptoms is described exactly spot on in one section... I am certain they are partial motor shutdowns where I do have some small control to delay the effects, though by doing this I go much deeper into the shutdown when I get it.


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22 Jun 2019, 6:47 pm

Mountain Goat wrote:
Thank you JSBACH.
The energy loss situations I describe are partial shutdowns. I believe with me masking brings fatigue and feeling of being drained of energy rather then what I describe as an almost sudden energy loss which feels like a faint but is not a faint if that makes sense. I am still working things out as to what causes what... Is only recently I have realized where things fit in, as in the past a doctor insisted that all the symptoms I had were some sort of mystery allergy (Hence why I was trying with bery limited success for 25+ years to try to track mystery allergies. Sure, one or two things I avoid, but the symptoms they give me are different. The things I always thought I was alergic to when I finally last year after asking since I was 18 to have an allergy test I actually had a basic NHS 6 point test... I found I don't have the allergies I thought I had... Reading about partial shutdowns and the way I get the symptoms is described exactly spot on in one section... I am certain they are partial motor shutdowns where I do have some small control to delay the effects, though by doing this I go much deeper into the shutdown when I get it.


What works for me when I feel a shutdown coming: retreat into a sensory deprived area. When at university (still a student, I drive there by car) I bring earmuffs and a blindfold, and rest for short periods, up to 30 minutes to recharge and avoid complete shutdown. Try to recover BEFORE shutdown hits!

I read in your signature your waiting to be assessed. Make sure you have a list written down with all your difficulties and autistic quirks. Sometimes even very experienced psychiatrists/psychologists fail to see autism at first sight, because a lifetime of practicing passing, compensated by high intelligence can give a false image.

Do you already have a date? Keep us informed!


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Mountain Goat
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22 Jun 2019, 7:44 pm

No date as yet. I believe a date will be given as I am closer to being assessed. About a month ago I was put on the list, and I was told it is about 14 months though it was hoped this would come down as they opened an additional new centre to work alongside the old one.
Is good advice you give and I naturally try ro find a quiet place to lie down... If walking I need to find somewhere quick... It has been known for me to need to lie on the floor in the rain to recover... I do not want attention as it seriously delays the recovery time.. However, I find chocolate or/and cola or certain sugary foods help speed up the recovery time or delay, or even prevent going into partial shutdown if I catch it early enough and I can go to rest for a bit. If I am no where near something sugary and also in a situation where I have to push through it, I can delay the effects but it comes at a great cost where I will go deep into it with a long rexovery time, and as I am in it I will go clammy and start to shake, and if I try to sit up or I have not reached a place to lie down in time, I get a loud medium pitched noise in my head which lowers in pitch while my eyesight dims to black and by that time I am on the floor. I never (Or very rarely do I ever remember except once when I had it bad in bed just getting ready to sleep, and I woke up the next morning knowing nothing about the time inbetween) get it apart from that once going to bed when all my senses have totally shut down but I may have gone into sleep instead?
I can hear and feel even when my eyesight has gone (If I have had it very deep which in itself is rare as I am able to reach a recovery before it gets that far) though I may not make sense of what I have heard until after the event. I will speak to respond but I try not to, or limit what I say as it takes great effort, and the effort delays recovery.


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Twilightprincess
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22 Jun 2019, 7:54 pm

Mountain Goat wrote:
No date as yet. I believe a date will be given as I am closer to being assessed. About a month ago I was put on the list, and I was told it is about 14 months though it was hoped this would come down as they opened an additional new centre to work alongside the old one.
Is good advice you give and I naturally try ro find a quiet place to lie down... If walking I need to find somewhere quick... It has been known for me to need to lie on the floor in the rain to recover... I do not want attention as it seriously delays the recovery time.. However, I find chocolate or/and cola or certain sugary foods help speed up the recovery time or delay, or even prevent going into partial shutdown if I catch it early enough and I can go to rest for a bit. If I am no where near something sugary and also in a situation where I have to push through it, I can delay the effects but it comes at a great cost where I will go deep into it with a long rexovery time, and as I am in it I will go clammy and start to shake, and if I try to sit up or I have not reached a place to lie down in time, I get a loud medium pitched noise in my head which lowers in pitch while my eyesight dims to black and by that time I am on the floor. I never (Or very rarely do I ever remember except once when I had it bad in bed just getting ready to sleep, and I woke up the next morning knowing nothing about the time inbetween) get it apart from that once going to bed when all my senses have totally shut down but I may have gone into sleep instead?
I can hear and feel even when my eyesight has gone (If I have had it very deep which in itself is rare as I am able to reach a recovery before it gets that far) though I may not make sense of what I have heard until after the event. I will speak to respond but I try not to, or limit what I say as it takes great effort, and the effort delays recovery.


I think that you need a thorough medical assessment to make sure there isn’t a physical cause. I remember you saying before that you have had one recently, but this does sound like a physical health issue.

It would be interesting to know what number your blood glucose levels are during such an episode.



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22 Jun 2019, 8:02 pm

No idea. I was tested for dibetis. I don't have it.


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Dan_Undiagnosed
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24 Jun 2019, 12:10 am

Mountain Goat wrote:
Now I also have a similar fear about a similar thing happening online. After my initial new member popularity I fear incase I overwelcome my stay as sometimes I repeat myself from many slightly different angles and variations of the same subject so I get a full definate multiangled conclusion from every aspect to hone in on the answer.


I worry about doing this too sometimes. Like I'm being too repetitive or monotonous. As jimmy m said, you (and I) are probably overthinking it. I feel I do this similar thing when I'm talking face to face with people. It's not that I'm worried they're dumb, more that I'm worried I'm not being clear enough so I over explain even the minor details of something when I'm talking. Because after all, how would I know if people understood me or not? Most likely NTs would not say something directly. And that fear of not being understood leads to over explaining and over explaining leads to a fear of being mistaken for patronising or condescending :lol: Honestly, sometimes we just can't win. Anxiety always seems to have its way.



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24 Jun 2019, 5:24 am

Dan_Undiagnosed wrote:
Mountain Goat wrote:
Now I also have a similar fear about a similar thing happening online. After my initial new member popularity I fear incase I overwelcome my stay as sometimes I repeat myself from many slightly different angles and variations of the same subject so I get a full definate multiangled conclusion from every aspect to hone in on the answer.


I worry about doing this too sometimes. Like I'm being too repetitive or monotonous. As jimmy m said, you (and I) are probably overthinking it. I feel I do this similar thing when I'm talking face to face with people. It's not that I'm worried they're dumb, more that I'm worried I'm not being clear enough so I over explain even the minor details of something when I'm talking. Because after all, how would I know if people understood me or not? Most likely NTs would not say something directly. And that fear of not being understood leads to over explaining and over explaining leads to a fear of being mistaken for patronising or condescending :lol: Honestly, sometimes we just can't win. Anxiety always seems to have its way.


What you write makes sense. I talk about every detail from every angle to explain a simple thing, and often I never finish the conversation to say what I need to say because the other person gets bored and walks off, or I go into so much detail that I forget what I was origionally trying to say! Usually I forget as my mind concentrates of telling the small details... Which leaves other people puzzled what I am talking about as I have forgotton too! Haha. Oops! :oops: So conversations with me may not do very well... I don't do smalltalk. I either do yes or no, or I go into detail! People normally talk by more then yes or no but not going into detail.
Though here in this part of Wales it is well known for people to naturally give a few extra details so when I come out with lots ad lots of detail, they don't think it could be a problem. A typical gossip (I don't do gossip as my conversations are more technical) conversation would be "Have you heard what happened to Dai... You know... Dai, whose wife works for the butcher and his mum used to be a teacher and they drive a green Morris 1000 car..." Where for me I would say "Ooh.. Dai. The one who has the Moreis 1000 with the (And I would describe the car in small details) and then I would forget to say what happened to Dai and end the conversation after a long description of his car... :oops:
It is not that I am trying to be difficult. Is just that I am following the way my mind is thinking as I speak and when I go into depth, I have to explore the depth before I can come back out again and try to recapture what I origionally intended to say!

I don't really know if this is just my character or if it could be asperges. Umm. I am thinking. If when I go for an assessment and I start opening up, it may take a few months rather then a day to assess me! :P


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Dan_Undiagnosed
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24 Jun 2019, 6:20 am

Oh yes, I get that too. I start telling a story or answering a question and I get lost on a tangent, and then that tangent leads to another tangent and so on. I've caught myself doing this a couple of times even recently while trying to answer the specialist's questions during my autism assessment :oops: