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mikeman7918
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26 May 2016, 2:40 pm

In addition to what I previously, there are indeed still those people who can't relate with us but pretend like they do which has the effect of sort of invalidating our struggles.

I find this kind of thing to happen a lot with my comorbids too.

"Everyone finds it hard to focus on school work."
Yeah, but I find it nearly impossible most of the time and when I do manage it it's very draining.

"Everyone gets stressed in school"
Yeah, but not everyone has to consciously slow their breathing to avoid hyperventilating and going into fight-or-flight multiple times per day.


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League_Girl
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26 May 2016, 2:53 pm

Well if someone is talking about their struggles and you can so much relate to it and that person has a diagnoses, I would say it's good you go get it checked out yourself. That is how people sometimes find out they are on the spectrum. Sometimes people just assume what they are going through is normal, especially if they have always been told everyone feels that way or goes through that so they just assume they needed to toughen up, buck up, just live with it because it's normal.

But my question is just how does anyone know that other people don't go through the same struggles as them? How does anyone know they are not exaggerating? I often wonder how harder I have it or if it's the same as lot of people. I can't see inside anyone's head and just because they don't seem to mind doesn't mean they are not upset and stressed out, they just might not be showing it. Do I always show my feelings? I also am not in other peoples lives 24/7 so I wouldn't see their struggles and how they handle things and how they live.

Funny story here, I was on another forum and there was a guy on there who worked full time and he would get so exhausted he would come home and spend his time resting and spend his days off resting because he is so exhausted and he can't be with his friends because he has to spend his time off resting from work. He thought this was normal and I told him "lot of people don't get so exhausted from work they can't do anything else " and I also think he could have an ASD or something but no he is unaware and thinks he is "normal" but just a little strange. Even I don't get so exhausted I have to sleep on my days off and even after work and do nothing else. Instead my way of relaxing when I come home exhausted from work is watching TV or playing video games or doing the computer and this was when I didn't have kids. I didn't even want to do any other work and I only wanted to relax. Hey even my mom comes home from work and she wants to sit and watch TV or read, not clean. But yet I wonder how in the world do parents come home and still clean and cook and take care of their kids because I don't think I would be able to do that which is why I work part time. I wouldn't have to sleep of course, I would have so much stress on me I would be a mess but yet lot of people can handle this. It's all different degree. For lot of people coming home from work exhausted and relaxing just by watching TV or reading is a luxury while for people like me it's a need. But if that man wants to live his life that way slaving away and not actually have a life except working and sleeping, his choice. But to me that isn't worth living. But it's amazing what people think what is normal and don't even notice how others can work full time and still be able to hang out with their friends and do fun things, do they just assume those people must be rich and not work full time so they don't need to work long hours?


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Last edited by League_Girl on 26 May 2016, 3:22 pm, edited 1 time in total.

skibum
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26 May 2016, 3:08 pm

I thought it was normal to feel the things I felt for much of my life exactly because of what you mentioned in your first paragraph. And the fact that my doctor and nurse parents kept calling me a hypochondriac and that I was always told to buck up made me believe that I was not really impaired when I was.

The differences are obvious in an example like this. I get physically affected by certain sounds. I meltdown very violently, not in the sense that I am violent, but the meltdowns are very graphic for lack of a better word. People who are just annoyed by noise don't meltdown like I do. And that is not something I can just hide or stop from happening. I have to get away from the sound. I don't have a choice. I can't be around it. People who are just annoyed don't have to get away. They are just annoyed. Sounds have caused me to physically collapse and black out when everyone else there was fine and having a good time. I have often wanted to commit suicide because of the sounds I was hearing. That is not normal. These are not things that you can just hide. If I stay in the vicinity of the sound for longer than a couple of minutes, I will not be physically able to contain my reaction. So for someone to tell me that they experience what I do and feel what I feel when they can stay in hearing distance of that sound and not have any visible reaction at all makes me believe that they have no idea how I really feel. If they can continue with their activity without interruption and not have that sound impair them to the point where they can't function at all, they do not feel what I feel.

The fact that I can't be in a room with other people for more than a few minutes at a time without facing sheer exhaustion or having to rock back and forth because I am so exhausted and overwhelmed by the physical movements of other people's body parts and the sounds of their voices, and the fact that I might have to sleep for a very long time to recover from being in a crowded room, is not normal. I understand that people are tired when they are in crowds. But normal people don't take six weeks to recover from the exhaustion of a two day church retreat. One church retreat we went to was two days and at the end of the first day, I was so exhausted just from the presence of the other people that the girl who invited us told me, "I know exactly how you feel, go ahead and rest for an hour and then you can come back and join us and you should be fine." I was like, an hour? You have NO IDEA what I feel. It took me about two weeks to begin to recover from that.


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26 May 2016, 9:31 pm

I would never have the nerve to tell a mother who has had difficult and painful childbirth that I know what that is like and that I know what she feels because I had menstrual cramps. It's kind of like that. Or try telling a man who has passed a large kidney stone that you know how he feels because you had cramps. Yeah right. I am sure he would punch you right in the nose.


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26 May 2016, 9:43 pm

skibum wrote:
Nicola2206 wrote:
It's what skibum said. Thanks skibum for explaining this so well. I meant to say exactly those things but couldn't.

I was mostly referring to family members I know aren't autistic. I wasn't formally diagnosed but a therapist recognized the traits. It is possible someone else in my family is an aspie or a borderline case (I suspect at least two of them), but when I talk to them they don't say their issues are as bad as mine. The other family member, however, is definitely NT and she is an invalidating person overall since she seems to have little understanding of others around her and thinks everybody should be like her. I suspect she has a low empathy level.

It's exhausting cause it seems that if you aren't like Rain Man people don't take you seriously and often not even therapists are able to recognize the milder cases on the spectrum. This results in family thinking I simply have an annoying personality when instead, I have real difficulties. When I tell them not to scream or talk too loudly because it's physically painful for me, when I tell them to close the curtains cause it's too bright for me outside and it hurts my eyes I am not simply being annoying or needy or spoiled. It's because those things really hurt my ears and eyes.
Glad I could help Nicola. :heart: Like you said, Nicola, people who genuinely suffer from these issues tend to be honest about them. For example, Autistic people, or fellow suffering people even if they might not be Autistic, talking to each other will say, "I struggle this way with sound or touch or texture. I don't struggle to the degree that you do in this area but I understand that you really struggle with it." Or, "Wow, you really struggle with it much more or much less than I do but here is how it affects me." A person who is just trying to dismiss you or to make themselves feel better by trying to "reassure" you, it's really about making themselves feel better, not you, will argue with you and insist that they can relate to you and that they completely understand how you feel even though it is 100% obvious that they have absolutely no idea just like in the example that Crazy Lady posted.

People who really understand will acknowledge, validate and support you in these conversations. People who don't understand will invalidate, dismiss and be condescending.


Yup. And the people who also live with the sensitivities and struggles can also describe and give examples of situations that cause them problems. It may not be to the same degree, as you said, but it is personal and specific. This "proves" that they understand.



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26 May 2016, 9:47 pm

I don't think I said anything wrong.



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26 May 2016, 9:54 pm

If you believe somebody doesn't understand your suffering, EDUCATE the person about that.

Why place blame on the person for not understanding?

It's better to educate a person who's ignorant of something than to get angry at someone by default for exhibiting ignorance. It's possible the person had good intentions.



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26 May 2016, 9:58 pm

kraftiekortie wrote:
I don't think I said anything wrong.
You did not say anything wrong. I think your response annoyed Joe because it implied that you did not fully acknowledge part of what we felt.


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26 May 2016, 10:06 pm

kraftiekortie wrote:
If you believe somebody doesn't understand your suffering, EDUCATE the person about that.

Why place blame on the person for not understanding?

It's better to educate a person who's ignorant of something than to get angry at someone by default for exhibiting ignorance. It's possible the person had good intentions.
They usually start with good intentions and sometimes the intentions stay good. And as far as I do, I usually do a lot of educating. But just because I end up educating them which I usually do, I get very angry if they refuse to listen and continue to argue. It's one thing to be ignorant, it's another to argue with the people who are telling you how they feel and insist that they don't actually feel what they feel but rather what the person arguing would be feeling in a similar situation instead. If I tell someone how I feel about something and they hear me and respect that that is what I truly feel than of course I won't be angry. I understand that they can't possibly know and that their intentions are good and I respect that. But if they just continue to insist that I am being over dramatic or seeking attention or being a spoiled brat or whatever and they tell me that I can't possibly be affected the way that I am being affected because no one is really affected like that, and that I just need to stop reacting and do whatever, because it's not possible for someone to truly be that affected so therefore I must be making it up, then yeah, I will be pissed to the core. I am pretty sure that that is what the OP is talking about and that is what makes me infuriated.

It's not right for them to insist that they know exactly how I feel and that they experience it too and then turn around and bash me for how I am reacting. If they experienced what I was experiencing they would react the same way. The fact that they don't proves that they are not experiencing it and the fact that they can bash my reaction proves that they have never experienced it.

A great example is how people love to tell me that I should just wear ear plugs because they know exactly how I feel because loud sounds bother them too. Well if they had ever once in their life experienced sounds like I do they would never suggest that I just wear ear plugs. A statement like that just shows me that they have no clue at all.


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Last edited by skibum on 26 May 2016, 10:18 pm, edited 1 time in total.

kraftiekortie
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26 May 2016, 10:17 pm

If I offended you in any way, Joe, I apologize. It was not my intention.

Sometimes, people see something in themselves when they see somebody, say, react to a sound or have trouble communicating.

No, it doesn't mean the person is autistic, obviously. But it might inspire a person to explore the possibility that autism might be behind the difficulties they are experiencing.



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26 May 2016, 10:46 pm

That is absolutely right and good and I have actually had that experience several times. When I have shared my own experiences while educating others I have had several people wonder from hearing me if they or their spouses might be HFA as well. I actually believe that one of those people actually ended up getting a diagnosis after we talked. So yeah, it definitely turns out for the good sometimes.


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27 May 2016, 12:38 am

This is why peep talks doesn't seem to work out for me.

Worse part after the "Me too"? Especially when there's a degree of clarity: The "Not my problem" comment.


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27 May 2016, 6:58 am

skibum wrote:
I have met other Autistic people, not many but a handful in real life. I have conversed at length with almost all of the other Autistic people I have met. I also know many NTs and I know they are NTs. I have had NT's say those comments to me and I know that the people saying them to me were NTs. I have also had other Autistic people relate to the struggles that I have and we have talked about them in detail. I have noticed that there is a HUGE difference when I meet another Autistic person and we talk about these things than when I meet an NT and the NT says, "I feel that way too." The conversation is very different between the two different types of people. It always is. The entire vibe of the conversation is different and it is obvious from the very first moment. In my experience, when it has been me sharing with another Autistic, we immediately develop a bond like a camaraderie because we are talking about the same thing. There is an automatic respect and sharing of each other's struggle. There is never a feel of invalidation or minimizing or trivializing or one upping. These conversations are full of empathy and mutual understanding and respect.

When an NT tells me that he or she experiences what I experience, it is a very different feel. It feels very infuriating, so much so that sometimes it causes me to meltdown. It almost immediately becomes extremely obvious that the person has absolutely no clue whatsoever of the severity and frequency in which I feel what I feel and how it affects my body and my brain. But they tend to insist that they understand and actually it often feels like they are trying to convince me that I don't feel or respond to situations like I actually do but that I should feel and respond to them like they do. And whatever their intentions are in saying it, whether they are trying to make me feel better or not, it does not make me feel better at all. It just makes me furious and makes me want to slap them. Of course, I have to coddle them because I know they mean well but I usually end up giving them a lecture about the reality of the situation. I have received more than one apology after explaining to them how our responses to things are not anywhere close to being the same at all. If I experienced things the same way they do, I would not be Autistic. That's kind of the whole point of the diagnosis.
Thank you for saying this so well, skibum, that is exactly how I see it too.

One of my main issues is that I hardly ever know what to say. It's a problem I encounter with every single person I have ever known. If I don't care to talk to them anyway (which is usually the case, as I would usually much rather engage in my interests), I don't care, but on the occasion when I would like to get to know them/ keep in touch, it is a real problem. Even if it starts off okay, I always run out of things to say and can't come up with anything when we meet/ are on MSN etc. It has never happened that I don't. Sometimes in a a chat others may add something that moves it along so I can come up with something to say to that, until the next time, but if no one does, or it's one on one, it will reach an end.

I tried to explain this to a relative once and they thought it over and said that sometimes they too found it hard to talk to people and that some people were harder to talk to.
The thing is that I have seen them in action and I know how easily they communicate and how they come up with something to say. That one time X years ago when they encountered a person who wasn't very talkative is so not the same as my issue with every single person I have ever known online and IRL.

I know for an absolute fact that this person didn't mean to be annoying or dismissive, but it still aggravated me because they don't know. It just doesn't compare.

I also know very well how much of a relief it is to discuss it with an aspie who has it the same way. Just the validation of someone who knows first hand what you're going through!
That's not to say that any aspie can understand though, just like I can't relate to the sensory issues some of you suffer. The closest I come is how it is to have a migraine, and they pass and are only so often, so it doesn't compare when the only sensory related thing I truly suffer is being sensitive to heat. Some sounds (or more likely their source) can annoy me, as you said in another post in this thread, but I have no need to get away.
While I prefer silence, I only need silence when I concentrate.


also skibum, so nice to see you here again! :D :heart:

B19 wrote:
Most NTs would probably not even understand why a comment of Oh I Am Like That Too might feel discounting and annoying to someone on the spectrum, but it would depend on the context and subject of the conversation too.
I once mentioned this to an NT who had a specific issue that I won't go into any detail about, and they felt very differently about it than I do. They said they appreciate it when someone understands, even if it's only a little.
skibum wrote:
NT's can definitely have sensitivities as well. Nothing in Asperger's is exclusive to just Asperger's.
Very true. I have family members who are sound sensitive, which I have never understood. I am ashamed to admit it now, but until I became used to seeing talk about sensory issues here on WP, I thought they (especially my grandfather) were exaggerating massively TBH. I had no understanding of that as an issue.

skibum wrote:
I think one of the problems is that many people always want what we feel to be "good" or "positive" and they will go to whatever lengths necessary to put a positive spin on everything.
Yeah, people like that seriously get on my nerve.


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27 May 2016, 9:24 am

Hi Skil! So nice to see you too. I have missed you. :D :heart:


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27 May 2016, 9:29 am

I've missed you too. I thought you had left WP since I haven't seen you around in ages. I'm very glad to see that you're posting here again. We have to talk later on and reestablish contact. :)


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Nicola2206
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27 May 2016, 9:43 am

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Some people might just have a glass of wine and sit down and in a few minutes they are fine. But for many of us, we are in that crisis mode all day for every little thing that most people take for granted and don't even notice. I have a friend who also has HFA/Asperger's and we were with an NT once trying to help her understand what it is like for us. We were talking about our proprioceptive issues and this kid, I think he is 16, was explaining to her the extraordinary amount of effort it takes for him to make himself a cup of coffee in the morning. He shared that after I explained how I often have to take a nap after having a simple meal because of the effort it took for me to make the meal and to eat it.


This. And omg, I experience being tired like that too. I have to sleep when I do something I find exhausting and yes sometimes it includes making a meal and cleaning the kitchen.


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