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How much are things you experience downplayed ?

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SharonB
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11 Dec 2019, 1:16 pm

skibum wrote:
...Then a few minutes later, I told him again so he looked down to see the hood open and my foot practically against the running engine. He was like, "WHAT??? All you said was, 'My feet are hot,' I had no idea that your feet were practically burning!"
So when people downplay everything I say as if it is nothing, they don't realize how critical the situation really is for me.

YES. I had a similar - I said the car was shaking. I was seemingly "calm" - but clearly it was distressing: I took the large effort to mention the issue, right? My husband was repeatedly dismissive (he was driving another car). When he finally "saw for himself", he responded the same way: OMG!! !! WTH!! !! and immediately took it to auto repair.

My experiences were/are downplayed All The Time. I am just now learning to validate my own experiences and "educate" others when there's an opportunity. My NT dad frequently "comforts" me with "it's like that for me and everyone" and I have started nicely saying, "no, not really. Let me explain further." He listens.



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11 Dec 2019, 1:55 pm

SharonB wrote:
skibum wrote:
...Then a few minutes later, I told him again so he looked down to see the hood open and my foot practically against the running engine. He was like, "WHAT??? All you said was, 'My feet are hot,' I had no idea that your feet were practically burning!"
So when people downplay everything I say as if it is nothing, they don't realize how critical the situation really is for me.

YES. I had a similar - I said the car was shaking. I was seemingly "calm" - but clearly it was distressing: I took the large effort to mention the issue, right? My husband was repeatedly dismissive (he was driving another car). When he finally "saw for himself", he responded the same way: OMG!! ! ! WTH!! ! ! and immediately took it to auto repair.

My experiences were/are downplayed All The Time. I am just now learning to validate my own experiences and "educate" others when there's an opportunity. My NT dad frequently "comforts" me with "it's like that for me and everyone" and I have started nicely saying, "no, not really. Let me explain further." He listens.
Wow! It is so good that your husband saw the car. When I was like eleven we were driving in my dad's old VW van. You know the ones, the old classic, with the red bottom and white top! I just casually mentioned, I smell gas like I was mentioning that I saw a butterfly or something. Fortunately my dad heard me and stopped at a mechanic and had it checked. Thank God he did, there was a leak and it could have caused a fire.

And speaking of fire, I have been in cars twice when they were actually on fire and my reaction was so subdued. I just looked out the window and calmly said, the car is on fire. And that was it. I never seem to panic until way after the fact like days or weeks later when I realize what could have been.

I HATE it beyond anything when people say, "it's like that for everybody," or "life is hard for everybody." I have to explain to them that that is not actually true. When people tell me it's hard for everybody, I actually then describe in nitty gritty detail what I am actually experiencing and that usually shuts them up. They have no idea what to say. Many people have asked me how I am still alive. And that is when I say, "It's not like that for everybody, you get it now?" And when people tell me that life is hard for everybody I explain to them that it is not. I help them understand that things in life are hard for everybody, things like finances, relationships, etc. LIFE is only hard for people who have to struggle and fight every day to literally stay alive. There is a big difference. And for many of us not only is life hard in and of itself, but we also have to struggle with the things in life that are also hard for everybody.

My therapist had to explain that to my brother because he would always tell me that life is hard for everybody. My therapist told him that for me, sometimes the act of actual breathing is challenging. I have severe hypertonia and when it flares up, which is very often, sometimes, just the fact that I am conscious and breathing and upright is a really big deal. So to tell someone who struggles just to stay alive that life is hard for everybody, that is really incredibly dismissive and cruel. I am really glad that your dad is able to listen to you. My parents cannot and they dismiss every struggle that I have and tell me it's my choice because I am just lazy or make bad decisions.


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SharonB
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11 Dec 2019, 2:22 pm

^^
@skibum, relating to your experience in the way that I can: both my kids had croup. My NT son's was mild to moderate and when the his breathing caught he cried so hard (which made it worse), so it was a matter of calming him down. On the other hand my AS-like daughter had a moderate to severe case, and her reaction was to sit very still and quietly on the couch, not moving, paying attention to every shallow and slow breath. I took a big risk in not taking her to Urgent care (any NT mom probably would have, but maybe not if they didn't understand that apparent apathy = crisis!). I can imagine you, contemplating your breaths... is this passing, is this an emergency, is this it?

When my young son got lost, I was quick and efficient in obtaining help and finding him. My husband said I was uncannily without emotion. Of course on the inside I was imagining all sorts of horrible things. I am very expressive, or I am very not. I guess that confuses people.



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11 Dec 2019, 3:03 pm

This is all so interesting. I am so glad to see that other Autistic people are like. Me. I am also very much like you in either being extremely expressive or completely Vulcan! :D

I can imagine that as a mom it can be very difficult for you because you feel so much for your kids who are helpless when they are very young. When stuff is happening to me I tune into my body and try to regulate it and work with it. That is one reason I refuse to take any kind of meds at all. I must be completely aware and in tune with what my body is doing so that I can work with it and accommodate what it needs even if it is excruciatingly painful. I had a migraine the other day that stemmed from conversation overload. The migraine was so severe that as I lay in bed, every single inhalation sent a searing pain from behind my eye into the back of my head. Most people would have taken a medication but I always refuse. At one point, I questioned whether it was worth it to keep breathing but I have an insane survival instinct so I had to no matter how much it stopped. But it was important to me to be in tune with the pain and to follow it and to understand it in order to do what I needed to do to heal it. I think that I am very much like a wild animal in those ways. I am very much a primal Autistic. For those of you who do not know what Primal Autism is, here is a good video about it.

https://www.youtube.com/watch?v=vXPK0AAM79U&t=556s


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magz
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11 Dec 2019, 3:10 pm

SharonB wrote:
^^
@skibum, relating to your experience in the way that I can: both my kids had croup. My NT son's was mild to moderate and when the his breathing caught he cried so hard (which made it worse), so it was a matter of calming him down. On the other hand my AS-like daughter had a moderate to severe case, and her reaction was to sit very still and quietly on the couch, not moving, paying attention to every shallow and slow breath. I took a big risk in not taking her to Urgent care (any NT mom probably would have, but maybe not if they didn't understand that apparent apathy = crisis!). I can imagine you, contemplating your breaths... is this passing, is this an emergency, is this it?

When my young son got lost, I was quick and efficient in obtaining help and finding him. My husband said I was uncannily without emotion. Of course on the inside I was imagining all sorts of horrible things. I am very expressive, or I am very not. I guess that confuses people.

I have a tendency to Antipanic - when facing a real, well-defined danger, I become psychopatically calm and rational. I dealt with a burglar, I got lost in mountains, my 2 weeks old daughter was losing her breath and turning blue on my hands - I know what I'm talking about. I couldn't feel the dramatic seriousness of the situation because I was too focused on finding solutions.
And later, when it's safe, I need to fall sick for a few days to pay some kind of debt my Antipanic apparently creates.


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magz
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11 Dec 2019, 3:15 pm

skibum wrote:
This is all so interesting. I am so glad to see that other Autistic people are like. Me. I am also very much like you in either being extremely expressive or completely Vulcan! :D

I can imagine that as a mom it can be very difficult for you because you feel so much for your kids who are helpless when they are very young. When stuff is happening to me I tune into my body and try to regulate it and work with it. That is one reason I refuse to take any kind of meds at all. I must be completely aware and in tune with what my body is doing so that I can work with it and accommodate what it needs even if it is excruciatingly painful. I had a migraine the other day that stemmed from conversation overload. The migraine was so severe that as I lay in bed, every single inhalation sent a searing pain from behind my eye into the back of my head. Most people would have taken a medication but I always refuse. At one point, I questioned whether it was worth it to keep breathing but I have an insane survival instinct so I had to no matter how much it stopped. But it was important to me to be in tune with the pain and to follow it and to understand it in order to do what I needed to do to heal it. I think that I am very much like a wild animal in those ways. I am very much a primal Autistic. For those of you who do not know what Primal Autism is, here is a good video about it.

https://www.youtube.com/watch?v=vXPK0AAM79U&t=556s

Wow, this level of connection with your body is really impressive! Unachieveable for me. I need to really focus in perfectly comfortable environment to identify I'm hungry.


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skibum
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12 Dec 2019, 9:42 am

magz wrote:
SharonB wrote:
^^
@skibum, relating to your experience in the way that I can: both my kids had croup. My NT son's was mild to moderate and when the his breathing caught he cried so hard (which made it worse), so it was a matter of calming him down. On the other hand my AS-like daughter had a moderate to severe case, and her reaction was to sit very still and quietly on the couch, not moving, paying attention to every shallow and slow breath. I took a big risk in not taking her to Urgent care (any NT mom probably would have, but maybe not if they didn't understand that apparent apathy = crisis!). I can imagine you, contemplating your breaths... is this passing, is this an emergency, is this it?

When my young son got lost, I was quick and efficient in obtaining help and finding him. My husband said I was uncannily without emotion. Of course on the inside I was imagining all sorts of horrible things. I am very expressive, or I am very not. I guess that confuses people.

I have a tendency to Antipanic - when facing a real, well-defined danger, I become psychopatically calm and rational. I dealt with a burglar, I got lost in mountains, my 2 weeks old daughter was losing her breath and turning blue on my hands - I know what I'm talking about. I couldn't feel the dramatic seriousness of the situation because I was too focused on finding solutions.
And later, when it's safe, I need to fall sick for a few days to pay some kind of debt my Antipanic apparently creates.
Wow, those are some intense and scary situations!


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12 Dec 2019, 9:45 am

magz wrote:
skibum wrote:
This is all so interesting. I am so glad to see that other Autistic people are like. Me. I am also very much like you in either being extremely expressive or completely Vulcan! :D

I can imagine that as a mom it can be very difficult for you because you feel so much for your kids who are helpless when they are very young. When stuff is happening to me I tune into my body and try to regulate it and work with it. That is one reason I refuse to take any kind of meds at all. I must be completely aware and in tune with what my body is doing so that I can work with it and accommodate what it needs even if it is excruciatingly painful. I had a migraine the other day that stemmed from conversation overload. The migraine was so severe that as I lay in bed, every single inhalation sent a searing pain from behind my eye into the back of my head. Most people would have taken a medication but I always refuse. At one point, I questioned whether it was worth it to keep breathing but I have an insane survival instinct so I had to no matter how much it stopped. But it was important to me to be in tune with the pain and to follow it and to understand it in order to do what I needed to do to heal it. I think that I am very much like a wild animal in those ways. I am very much a primal Autistic. For those of you who do not know what Primal Autism is, here is a good video about it.

https://www.youtube.com/watch?v=vXPK0AAM79U&t=556s

Wow, this level of connection with your body is really impressive! Unachieveable for me. I need to really focus in perfectly comfortable environment to identify I'm hungry.
That is really interesting because things like being hungry and tired, I can't always tell when I feel those things, especially in the moment.


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SharonB
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12 Dec 2019, 2:29 pm

skibum wrote:
...But it was important to me to be in tune with the pain and to follow it and to understand it in order to do what I needed to do to heal it. I think that I am very much like a wild animal in those ways. I am very much a primal Autistic. For those of you who do not know what Primal Autism is, here is a good video about it.

https://www.youtube.com/watch?v=vXPK0AAM79U&t=556s


Right there with you. For the video and checked 20-some (of 24). This is odd given that I reported good impulse control during my assessment... for me impulse control for me is when in severe distress I growl at my children and don't knock them over. See, impulse control R us!!



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12 Dec 2019, 3:11 pm

I LOVE your definition of impulse control!! :D


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12 Dec 2019, 3:50 pm

A lot.

This is why I keep a tiny circle of friends and I give everyone else the benefit the doubt as being unintentionally ignorant.



magz
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13 Dec 2019, 2:25 am

SharonB wrote:
This is odd given that I reported good impulse control during my assessment... for me impulse control for me is when in severe distress I growl at my children and don't knock them over. See, impulse control R us!!

When I started to yell at people (esp. my children but others too), my husband said I become easier to live with.
Apparently, too strong impulse control is not good as well.


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13 Dec 2019, 3:49 am

skibum wrote:
magz wrote:
skibum wrote:
This is all so interesting. I am so glad to see that other Autistic people are like. Me. I am also very much like you in either being extremely expressive or completely Vulcan! :D

I can imagine that as a mom it can be very difficult for you because you feel so much for your kids who are helpless when they are very young. When stuff is happening to me I tune into my body and try to regulate it and work with it. That is one reason I refuse to take any kind of meds at all. I must be completely aware and in tune with what my body is doing so that I can work with it and accommodate what it needs even if it is excruciatingly painful. I had a migraine the other day that stemmed from conversation overload. The migraine was so severe that as I lay in bed, every single inhalation sent a searing pain from behind my eye into the back of my head. Most people would have taken a medication but I always refuse. At one point, I questioned whether it was worth it to keep breathing but I have an insane survival instinct so I had to no matter how much it stopped. But it was important to me to be in tune with the pain and to follow it and to understand it in order to do what I needed to do to heal it. I think that I am very much like a wild animal in those ways. I am very much a primal Autistic. For those of you who do not know what Primal Autism is, here is a good video about it.

https://www.youtube.com/watch?v=vXPK0AAM79U&t=556s

Wow, this level of connection with your body is really impressive! Unachieveable for me. I need to really focus in perfectly comfortable environment to identify I'm hungry.
That is really interesting because things like being hungry and tired, I can't always tell when I feel those things, especially in the moment.



For me it's difficulty telling when I'm full up , and telling when I need to drink . I'll get to having a dry mouth, headache and nausea quite often before realising I need to drink.


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13 Dec 2019, 7:41 am

I downplay my own as much as possible so no one has to and no one needs to know.

It gets the opposite effect apparently; no amount of self downplaying gets rid of worrywarts.
Yet whenever I stop downplaying myself, others would likely downplay it.

Choosing the former because latter's more annoying and disappointing.


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13 Dec 2019, 8:02 am

magz wrote:
I have a tendency to Antipanic - when facing a real, well-defined danger, I become psychopatically calm and rational. I dealt with a burglar, I got lost in mountains, my 2 weeks old daughter was losing her breath and turning blue on my hands - I know what I'm talking about. I couldn't feel the dramatic seriousness of the situation because I was too focused on finding solutions.
And later, when it's safe, I need to fall sick for a few days to pay some kind of debt my Antipanic apparently creates.


I know it sounds crazy but I find it much easier to deal with someone in full cardiac arrest than someone with a large cut on their finger: perhaps it is due to the fact it is a clearly defined problem and I am trained in what to do. My baby boy was starting to choke once and I very calmly turned him over and gave him back blows like I was just rocking him to bed meanwhile when he cries in the middle of the night (like literally all babies do) I can go into a complete panic. I remember during the cardiac arrest situation (it was at work) one of my coworkers asked is he okay and I just said that he isn't likely to survive (he ultimately didn't) in the most neutral voice possible. They must have thought I had ice running through my veins!

Same with when my baby was born: after losing the first two we were in the Hospital naturally on edge and then his heart rate suddenly became very unstable. Even though my wife had to have an emergency C-section at 4am I was as calm as if was a simulation and only thinking to myself "we CANNOT go through his for a third time." Even when he wasn't breathing initially I just remained calm, likely because all the doctors and nurses were as well. In the end he started breathing in less than 10 seconds after they put him on the table and he is as happy and healthy as a baby can be.

Even as a young child I was very anxious but I once was drowning and still remember feeling very calm and just thinking to myself "how am I going to get out of this one? I hope I don't get into trouble for going into the deep end" before my brother pulled me out.

Back to the OP's question, I no longer talk to anyone about any struggles because it inevitably goes something like "everyone gets depressed", "everyone gets anxious" or my favorite "everyone finds new situations difficult".



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13 Dec 2019, 9:34 am

Crazy-making