Disappointed with the 'help'

[LunaAurum]

I'm really just posting this here to vent because this frustration has been building ever since I got diagnosed 1.5 year ago and it's reaching the point where I need to find a way to blow the steam.

I suspect I'm not the only one dealing with this, but I am so frustrated and exhausted by the ongoing, relentless lack of understanding from people around me whenever I remotely try to assert what I need to make my life easier with autism. I hold it all in because I DO understand that they can't change how they see things as neurotypicals any more than I can stop having autism. I get that they're not evil or trying to be mean. My diagnosis is harder for them to accept than for myself because they don't live inside my head, they only know the person they saw on the outside (and frankly it's obvious that they much prefer that person to the 'real', autistic me).

So I do not take out my frustration on them, but I am so, so disappointed that the 'help' and 'acceptance' everyone assures they will give you actually doesn't often pan out in real life. Sure, they SAY it but then whenever I actually make a change or devise a plan for coping with certain issues in my life, they act like it's silly, or pointless or weird and they do as little to support it as they can. Even though they do love me, it's clear that they absolutely do not want to deal with my autism at all, aside from going 'yay you're autistic we still love you', pat me on the back and walk away. Right now, I have managed to work almost nonstop for months to reach an income where I can afford some help with household work (because I have always had severe struggles with organization and clutter and I just want help to keep things nice, I CAN'T do it by myself, it's always overwhelming me). But my family is really negative about it, like I'm being frivolous and wasting money because I don't WANT to clean or something. I am so hurt and fed up of that attitude. I believed my whole life I was maybe lazy and dumb because it took 36 years to figure out it was AUTISM and executive dysfunction, so now I am doing whatever I can to just have a decent, non-miserable life and home. Yet I'm still stuck being judged by people who love me because they just don't GET IT.

I'm so tired of trying to nicely and painstakingly explain that I am IMPAIRED in many ways. I don't like it, I didn't choose it and I wish it wouldn't affect me in those ways any more than THEY do. I'm not trying to be dramatic, or high-maintenance, I just want to actually enjoy my life a bit by getting HELP I need and not being stuck hiding alone in crisis mode all the damn time. But every time I actually reach for any actual help that's more than cutesy talk, there it is: People think I'm 'high-maintenance' and difficult.

At this point I am planning to move to live by myself and pretty much only deal with people on a professional or more superficial level because I don't really believe in this 'acceptance' thing anymore and I'm tired of looking for it. I just want to exist and do my thing without having to apologize for everything I need or feeling guilty because I'm 'inconvenient'.

Sorry for the rant, I'm just so, so fed up and got nobody to talk to about it.

 

[Wolfnox]

This helps. Watch your ears.

 

[Streetwise]

I'm really just posting this here to vent because this frustration has been building ever since I got diagnosed 1.5 year ago and it's reaching the point where I need to find a way to blow the steam.

I suspect I'm not the only one dealing with this, but I am so frustrated and exhausted by the ongoing, relentless lack of understanding from people around me whenever I remotely try to assert what I need to make my life easier with autism. I hold it all in because I DO understand that they can't change how they see things as neurotypicals any more than I can stop having autism. I get that they're not evil or trying to be mean. My diagnosis is harder for them to accept than for myself because they don't live inside my head, they only know the person they saw on the outside (and frankly it's obvious that they much prefer that person to the 'real', autistic me).

So I do not take out my frustration on them, but I am so, so disappointed that the 'help' and 'acceptance' everyone assures they will give you actually doesn't often pan out in real life. Sure, they SAY it but then whenever I actually make a change or devise a plan for coping with certain issues in my life, they act like it's silly, or pointless or weird and they do as little to support it as they can. Even though they do love me, it's clear that they absolutely do not want to deal with my autism at all, aside from going 'yay you're autistic we still love you', pat me on the back and walk away. Right now, I have managed to work almost nonstop for months to reach an income where I can afford some help with household work (because I have always had severe struggles with organization and clutter and I just want help to keep things nice, I CAN'T do it by myself, it's always overwhelming me). But my family is really negative about it, like I'm being frivolous and wasting money because I don't WANT to clean or something. I am so hurt and fed up of that attitude. I believed my whole life I was maybe lazy and dumb because it took 36 years to figure out it was AUTISM and executive dysfunction, so now I am doing whatever I can to just have a decent, non-miserable life and home. Yet I'm still stuck being judged by people who love me because they just don't GET IT.

I'm so tired of trying to nicely and painstakingly explain that I am IMPAIRED in many ways. I don't like it, I didn't choose it and I wish it wouldn't affect me in those ways any more than THEY do. I'm not trying to be dramatic, or high-maintenance, I just want to actually enjoy my life a bit by getting HELP I need and not being stuck hiding alone in crisis mode all the damn time. But every time I actually reach for any actual help that's more than cutesy talk, there it is: People think I'm 'high-maintenance' and difficult.

At this point I am planning to move to live by myself and pretty much only deal with people on a professional or more superficial level because I don't really believe in this 'acceptance' thing anymore and I'm tired of looking for it. I just want to exist and do my thing without having to apologize for everything I need or feeling guilty because I'm 'inconvenient'.

Sorry for the rant, I'm just so, so fed up and got nobody to talk to about it.

how confident are you about communicating with body language, a lot of neuro typicals are most respectful of that ,Even if they try to give the impression that they respect all differences, show them that you’re offended but not destroyed ,to show them your boundaries and limits

 

[Aspychata]

This helps. Watch your ears.

I think this broke my cell phone. lol

 

[Aspychata]

I'm really just posting this here to vent because this frustration has been building ever since I got diagnosed 1.5 year ago and it's reaching the point where I need to find a way to blow the steam.

I suspect I'm not the only one dealing with this, but I am so frustrated and exhausted by the ongoing, relentless lack of understanding from people around me whenever I remotely try to assert what I need to make my life easier with autism. I hold it all in because I DO understand that they can't change how they see things as neurotypicals any more than I can stop having autism. I get that they're not evil or trying to be mean. My diagnosis is harder for them to accept than for myself because they don't live inside my head, they only know the person they saw on the outside (and frankly it's obvious that they much prefer that person to the 'real', autistic me).

So I do not take out my frustration on them, but I am so, so disappointed that the 'help' and 'acceptance' everyone assures they will give you actually doesn't often pan out in real life. Sure, they SAY it but then whenever I actually make a change or devise a plan for coping with certain issues in my life, they act like it's silly, or pointless or weird and they do as little to support it as they can. Even though they do love me, it's clear that they absolutely do not want to deal with my autism at all, aside from going 'yay you're autistic we still love you', pat me on the back and walk away. Right now, I have managed to work almost nonstop for months to reach an income where I can afford some help with household work (because I have always had severe struggles with organization and clutter and I just want help to keep things nice, I CAN'T do it by myself, it's always overwhelming me). But my family is really negative about it, like I'm being frivolous and wasting money because I don't WANT to clean or something. I am so hurt and fed up of that attitude. I believed my whole life I was maybe lazy and dumb because it took 36 years to figure out it was AUTISM and executive dysfunction, so now I am doing whatever I can to just have a decent, non-miserable life and home. Yet I'm still stuck being judged by people who love me because they just don't GET IT.

I'm so tired of trying to nicely and painstakingly explain that I am IMPAIRED in many ways. I don't like it, I didn't choose it and I wish it wouldn't affect me in those ways any more than THEY do. I'm not trying to be dramatic, or high-maintenance, I just want to actually enjoy my life a bit by getting HELP I need and not being stuck hiding alone in crisis mode all the damn time. But every time I actually reach for any actual help that's more than cutesy talk, there it is: People think I'm 'high-maintenance' and difficult.

At this point I am planning to move to live by myself and pretty much only deal with people on a professional or more superficial level because I don't really believe in this 'acceptance' thing anymore and I'm tired of looking for it. I just want to exist and do my thing without having to apologize for everything I need or feeling guilty because I'm 'inconvenient'.

Sorry for the rant, I'm just so, so fed up and got nobody to talk to about it.

It feels like to me you aren't being taken seriously. You are being given the talk, but the action doesn't follow and this alone in itself is extremely frustrating. Deep breathing, get out of situations immediately. Another to realise is that people have come to accept you as you are and don't want to welcome in the new improved and enlightened you. It's easier to act like that person doesn't exist. Family dynamics. I went through this with my family when they wouldn't let go of stupid things l did in childhood. l was married and in my 40's and they are still obsessed with the fact l opened my xmas gifts early as 4th grader. l mean like shoot me and put it on my gravesite. So maybe that explains why people refuse to accept the new improved version of you. By the way, congrats on seeing things better and figuring out how to improve your life. Very very impressive.

 

[Streetwise]

It feels like to me you aren't being taken seriously. You are being given the talk, but the action doesn't follow and this alone in itself is extremely frustrating. Deep breathing, get out of situations immediately. Another to realise is that people of come to accept you as you are and don't want to welcome in the new improved and enlightened you. It's easier to act like that person doesn't exist. Family dynamics. I went through this with my family when they wouldn't let go of stupid things l did in childhood. l was married and in my 40's and they are still obsessed with the fact l opened my xmas gifts early as 4th grader. l mean like shoot me and put it on my gravesite. So maybe that explains why people refuse to accept the new improved version of you. By the way, congrats on seeing things better and figuring out how to improve your life. Very very impressive.

Schadenfreude ( malicious delight )can help a lot ,I get no end of pleasure!!! when I see somebody who was offensive to me suffering!!!

 

[LunaAurum]

It feels like to me you aren't being taken seriously. You are being given the talk, but the action doesn't follow and this alone in itself is extremely frustrating.

This is exactly the situation. Most of them low-key deny or ignore that I'm autistic, the diagnosis doesn't matter. I get that it's because I was masking and trying to function at high level so heavily for over 30 years, they can't believe that I'm truly no longer capable to be that person. They only see that other person; 'autistic-me' is only me being silly or having a bad day, it's not real.

I do understand their point of view that it's weird and that my issues are hard for them to fathom but I'm exhausted being the one always compromising around what is THEIR inability to adapt to the information. It's like it's too much to ask for them to even try, they're acting like it's more inconvenient for them to deal with than to me. I also do not get what I've ever done in my life for my own loved ones to think that I would LIE about something like this, that I am so lazy or ill-willed that I'd invent my symptoms. It's gutting that they don't take my word for what I'm going through. I was always a very honest person and worked hard, never taking anything I didn't earn. Why would I start now?? I'm hurt that it didn't buy me much faith or support now that I am losing certain faculties and genuinely need assistance and compassion. I'm struggling a lot with those emotions. I don't want to be spiteful and unfair to them since it's clearly beyond their understanding. I hate to sound dramatic but I've been feeling so... abandoned.

Thank you for your kind words <3

 

[Aspychata]

This is exactly the situation. Most of them low-key deny or ignore that I'm autistic, the diagnosis doesn't matter. I get that it's because I was masking and trying to function at high level so heavily for over 30 years, they can't believe that I'm truly no longer capable to be that person. They only see that other person; 'autistic-me' is only me being silly or having a bad day, it's not real.

I do understand their point of view that it's weird and that my issues are hard for them to fathom but I'm exhausted being the one always compromising around what is THEIR inability to adapt to the information. It's like it's too much to ask for them to even try, they're acting like it's more inconvenient for them to deal with than to me. I also do not get what I've ever done in my life for my own loved ones to think that I would LIE about something like this, that I am so lazy or ill-willed that I'd invent my symptoms. It's gutting that they don't take my word for what I'm going through. I was always a very honest person and worked hard, never taking anything I didn't earn. Why would I start now?? I'm hurt that it didn't buy me much faith or support now that I am losing certain faculties and genuinely need assistance and compassion. I'm struggling a lot with those emotions. I don't want to be spiteful and unfair to them since it's clearly beyond their understanding. I hate to sound dramatic but I've been feeling so... abandoned.

Thank you for your kind words <3

I so support you here. It's like it falls on us to plug up the dam and hold up the falling bridges that are falling. It's like you now have to work twice as hard to support your diagnosis. Kinda of ironic and laughable. So keep stating your truth, don't back down, eventually the realization will hit them. But be prepared, it may take time. Stand your ground, it's not your job to hold their hand ANYMORE.

 

[Kalinychta]

I completely understand what you're feeling, LunaAurum. I just posted a thread the other day very similar to yours about how my sister told me a few weeks ago that basically, in a nutshell, I am choosing to have depression and anxiety and any "excuses" I might make (including autism, not to mention mountains of scientific research that show how wrong she is) are just that--excuses.

The arrogance is what really gets you, isn't it? Like it's just a matter of willpower and discipline and that we're just lazy and "not trying hard enough." And somehow autism has a big bullseye on it when it comes to these kinds of opinions. No one would tell a schizophrenic that she needs to just "get over it" and that she's choosing to hallucinate, etc.

It especially hurts when it comes from family and friends, people whom you expect to support you and understand you. It really does make you want to shut your door and hang the "closed" sign up, figuratively speaking, as far as people-in-general and socializing go.

 

[Kalinychta]

This is exactly the situation. Most of them low-key deny or ignore that I'm autistic, the diagnosis doesn't matter. I get that it's because I was masking and trying to function at high level so heavily for over 30 years, they can't believe that I'm truly no longer capable to be that person. They only see that other person; 'autistic-me' is only me being silly or having a bad day, it's not real.

My family acts like that, too. It's like they think you spontaneously and dishonestly decided to claim to be autistic so that you can use it as an excuse for not changing. What's so angering about it is that they don't trust you and that they think they know you better than you know yourself.

This forum helps SO MUCH, though. It's full of people who know EXACTLY what you're talking about it, and it helps you feel so much less alone.

 

[anxiety247]

I'm really just posting this here to vent because this frustration has been building ever since I got diagnosed 1.5 year ago and it's reaching the point where I need to find a way to blow the steam.

I suspect I'm not the only one dealing with this, but I am so frustrated and exhausted by the ongoing, relentless lack of understanding from people around me whenever I remotely try to assert what I need to make my life easier with autism. I hold it all in because I DO understand that they can't change how they see things as neurotypicals any more than I can stop having autism. I get that they're not evil or trying to be mean. My diagnosis is harder for them to accept than for myself because they don't live inside my head, they only know the person they saw on the outside (and frankly it's obvious that they much prefer that person to the 'real', autistic me).

So I do not take out my frustration on them, but I am so, so disappointed that the 'help' and 'acceptance' everyone assures they will give you actually doesn't often pan out in real life. Sure, they SAY it but then whenever I actually make a change or devise a plan for coping with certain issues in my life, they act like it's silly, or pointless or weird and they do as little to support it as they can. Even though they do love me, it's clear that they absolutely do not want to deal with my autism at all, aside from going 'yay you're autistic we still love you', pat me on the back and walk away. Right now, I have managed to work almost nonstop for months to reach an income where I can afford some help with household work (because I have always had severe struggles with organization and clutter and I just want help to keep things nice, I CAN'T do it by myself, it's always overwhelming me). But my family is really negative about it, like I'm being frivolous and wasting money because I don't WANT to clean or something. I am so hurt and fed up of that attitude. I believed my whole life I was maybe lazy and dumb because it took 36 years to figure out it was AUTISM and executive dysfunction, so now I am doing whatever I can to just have a decent, non-miserable life and home. Yet I'm still stuck being judged by people who love me because they just don't GET IT.

I'm so tired of trying to nicely and painstakingly explain that I am IMPAIRED in many ways. I don't like it, I didn't choose it and I wish it wouldn't affect me in those ways any more than THEY do. I'm not trying to be dramatic, or high-maintenance, I just want to actually enjoy my life a bit by getting HELP I need and not being stuck hiding alone in crisis mode all the damn time. But every time I actually reach for any actual help that's more than cutesy talk, there it is: People think I'm 'high-maintenance' and difficult.

At this point I am planning to move to live by myself and pretty much only deal with people on a professional or more superficial level because I don't really believe in this 'acceptance' thing anymore and I'm tired of looking for it. I just want to exist and do my thing without having to apologize for everything I need or feeling guilty because I'm 'inconvenient'.

Sorry for the rant, I'm just so, so fed up and got nobody to talk to about it.

I haven't really told anyone yet about being aspie, but I agree with wanting to have help with things that other people don't really struggle with.

I actually hate cooking and the time it takes, so I would rather pay someone else to cook or order food that is cooked than to do the cooking myself. I rather spend that time doing my work to make the money that pays for someone to cook for me. People say it's a waste of money but it's been amazing for me.

 

[SpecG]

I'm really just posting this here to vent because this frustration has been building ever since I got diagnosed 1.5 year ago and it's reaching the point where I need to find a way to blow the steam.

I suspect I'm not the only one dealing with this, but I am so frustrated and exhausted by the ongoing, relentless lack of understanding from people around me whenever I remotely try to assert what I need to make my life easier with autism. I hold it all in because I DO understand that they can't change how they see things as neurotypicals any more than I can stop having autism. I get that they're not evil or trying to be mean. My diagnosis is harder for them to accept than for myself because they don't live inside my head, they only know the person they saw on the outside (and frankly it's obvious that they much prefer that person to the 'real', autistic me).

So I do not take out my frustration on them, but I am so, so disappointed that the 'help' and 'acceptance' everyone assures they will give you actually doesn't often pan out in real life. Sure, they SAY it but then whenever I actually make a change or devise a plan for coping with certain issues in my life, they act like it's silly, or pointless or weird and they do as little to support it as they can. Even though they do love me, it's clear that they absolutely do not want to deal with my autism at all, aside from going 'yay you're autistic we still love you', pat me on the back and walk away. Right now, I have managed to work almost nonstop for months to reach an income where I can afford some help with household work (because I have always had severe struggles with organization and clutter and I just want help to keep things nice, I CAN'T do it by myself, it's always overwhelming me). But my family is really negative about it, like I'm being frivolous and wasting money because I don't WANT to clean or something. I am so hurt and fed up of that attitude. I believed my whole life I was maybe lazy and dumb because it took 36 years to figure out it was AUTISM and executive dysfunction, so now I am doing whatever I can to just have a decent, non-miserable life and home. Yet I'm still stuck being judged by people who love me because they just don't GET IT.

I'm so tired of trying to nicely and painstakingly explain that I am IMPAIRED in many ways. I don't like it, I didn't choose it and I wish it wouldn't affect me in those ways any more than THEY do. I'm not trying to be dramatic, or high-maintenance, I just want to actually enjoy my life a bit by getting HELP I need and not being stuck hiding alone in crisis mode all the damn time. But every time I actually reach for any actual help that's more than cutesy talk, there it is: People think I'm 'high-maintenance' and difficult.

At this point I am planning to move to live by myself and pretty much only deal with people on a professional or more superficial level because I don't really believe in this 'acceptance' thing anymore and I'm tired of looking for it. I just want to exist and do my thing without having to apologize for everything I need or feeling guilty because I'm 'inconvenient'.

Sorry for the rant, I'm just so, so fed up and got nobody to talk to about it.

I had similar experience at my old job.

I was diagnosed in July 2018 at 37 years old.

I was completely open and honest with them about my condition, how the environment was affecting me and requested some changes to procedures.

They did very little, instead feeding me lip service while I was being constantly triggered by many things, mainly related to poor management, organisation and staff with a misplaced sense of superiority or just plain bullies / unpleasant management.

I tried my best as I always do, for 4 years, which included 18 months working mental night and day shifts that were all over the place - putting my health at risk in the process.

I suffered depression, anxiety, anger and meltdowns because of the environment and how I was treated by certain managers.

For 9 months after my diagnosis I tried to work with them so we could help each other but in the end I had to leave as the negative effects were growing to a point where I had potentially dangerous meltdowns - one of which involved me driving dangerously because a fellow road user was being unreasonable.

It was this event plus another once I arrived home that pushed me to make the decision to resign. I became so frustrated I hit my computer desk pretty hard, which couldn't have been pleasant for my missus, who was trying to offer advice but instead massively frustrated me and triggered a meltdown.

 

[Tony Ramirez]

All the help from people who don't have autism does not amount to a hill of beans. They don't understand what it is like to have ASD. They try to understand but then say things like "why did you say this", "why don't you socialize more" (I am doing that more but balanced) or the worst the silence that many who don't have autism give you.

 

[LunaAurum]

The arrogance is what really gets you, isn't it? Like it's just a matter of willpower and discipline and that we're just lazy and "not trying hard enough."

Definitely, or rather it's the feeling that taking an interest in and understanding what I'm going through is not worth their effort. They feel it's easier to pretend it can magically go away. I think it's because they fear it's overwhelming so they avoid it; maybe I'm bitter because I *can't* avoid it so I'm left taking care of everything alone.

I rather spend that time doing my work to make the money that pays for someone to cook for me. People say it's a waste of money but it's been amazing for me.

I'm the exact same with housework! I am great at working, I have my own business, I'm a total workaholic because it is the ONE area of my entire life where I feel competent. I basically want to work all the time and make money so I can just pay to have the crap I'm awful with be dealt with. It's a very simple concept, I don't want to keep fighting losing battles. Neurotypical people don't get that my abilities in one area are not transferable to another. It's like they think I should be able to be great at *everything*. I can't. I'm either extremely effective at a few things and completely useless at others. There is no middle and I can't 'spread it out' to be more even.

It was this event plus another once I arrived home that pushed me to make the decision to resign. I became so frustrated I hit my computer desk pretty hard, which couldn't have been pleasant for my missus, who was trying to offer advice but instead massively frustrated me and triggered a meltdown.

That's so harrowing The job market is a nightmare for us. I jumped from career to career for decades, always reaching good heights and busting my butt, only to crash and burn from all the politics, bad environments and asshole 'bosses' out to exploit their workers. Expecting any sort of respect or accommodations from them is like a bad joke. I got extremely lucky to be able to scrounge enough to survive working by myself now, because I think at this point I'm no longer remotely 'employable' according to what's expected of typical workers.

It took a ton of courage to resign once you saw how destructive it was to your well-being. I hope you are okay and safe <3