If someone says autistic people have to adjust

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Not all requests to adjust imply they don't accept you. There are some aspects of your behavior that is part of who you are (and that you obviously shouldn't change) and there are other aspects of your behavior that is what you do (and those you can change without affecting who you are).

I mean, NTs also have to grow as people, and that growth doesn't cost them their individuality. I don't see why should it be any different for aspies. Or let's put it this way: an NT was taught how to change by their parents when they were 4. An aspie didn't learn it at 4, so why not learn it later in life? As they say, better late than never.

I guess the kinds of aspies that neurologically can't do certain things would be a different story. But if it is something as simple as learning manners (such as refraining from commenting on stinky candle especially if the smell doesn't bother me that much anyway) why not learn it?

By the way there are some changes I would expressly NOT want to make. Like if someone requests that I change my career or change my religion, then no I won't change those things. But learning social skills is worth it for my own purposes anyway, so why not use outside pressure as a little encouragement?

You are definitely right about things like learning what is best to say or not say about a stinky candle. I think like one of the previous posters said, we have to define what we mean when we are talking about adjusting. I think everyone should learn basic manners and to be kind and considerate of others and to not feel a sense of entitlement no matter what neurotypes they are. I think there is a big difference in learning basic skills of humanity and being asked to adjust for things that are unreasonable. I just had another MRI today and after having long frustrating meltdown producing talks with the doctors and the MRI staff, I finally got them to adjust to my needs. And everything went really well once they understood that they could trust me. They stayed very quiet and calm even though I was completely unresponsive and then they immediately put me in a dark room and just monitored my blood pressure, pulse and oxygen. They stayed very quiet and just left me to my own devices. I was fully recovered in less than a half an hour and I drove home with no issues. So in this case, the NTs not only made the proper and necessary adjustment but I was able to educate them on what causes me to become unresponsive and how to deal with it. So hopefully if another Aspie finds herself in that situation, the staff will know what to do.

But interestingly enough, as I was on my way to the hospital, I told my neighbor that I had gotten food from the food bank in case she wanted some of it. She started going into a why don't I try this job or that job or try to move into a house over here or over there because her sister does this and that. Well her sister is an NT. Then she started asking me why don't I see if doctors can give me meds to overcome sensory overload and all my other Aspie traits? This is a conversation that I have a difficult time with. I appreciate that people are well meaning and that they really want to help but it gets to be too much to have these kinds of conversations all the time. I should not have to be chased out every single neighborhood because people want to play music loud. I am so severely Autisitic that I should be getting disability but I get denied over and over because I was not diagnosed as a child. I also have other disabilities as well. I am doing everything I possibly can to make it and survive. I am a very high level swim instructor and used to make $100 as a private contractor. Now I can't do that anymore because insurance laws have changed. Now I am stuck making minimum wage and I can only physically work about 20 hours a week before my body caves in.

I get no help from any services at all because I keep getting denied because I look so normal and the diagnosis was not around when I was a kid. But I am the one who has to adjust and figure out how to afford a home in the country where it is quiet or figure out how to adjust and not collapse and go into shock from overload so that I can work three jobs at minimum wage when I have the skill set to be making more than enough so that I don't have to be on welfare. I can't adjust like that. I really can't. I had been living undiagnosed trying to be as NT as everyone expected me to because I did not know any better. I did that for 47 years and the Autistic burnout that I suffered because of it nearly killed me. It crippled me and neurologically changed me to the point where I am actually crippled. I can't continue to make adjustments for these people. Not after nearly losing my life after spending a lifetime of adjusting.

But I do understand how you feel about people not respecting you. The Bible study example is an attitude that I have encountered in the past. Ironically, I get that kind of attitude from people when I say that I want to educate the authorities like hospitals and 911 and police systems in my town about Autism. I know from personally speaking to them that their Autism training is like a two hour power point presentation by Autism Speaks and that not an single Autistic person is involved in any step of creating that training or in the training of these people. But when I tell them that I would like to help them understand Autism and help by speaking to them from a first hand experience perspective of over 50 years, they all tell me that I am not qualified to talk about Autism because I don't have a degree in it. I often remind them that Temple Grandin, whom they pay thousands of dollars to to speak, does not have a degree in Autism either.

But yeah, it is extremely frustrating when people pull the Autism card to make the excuse of why they don't have to listen to you or respect what you say. I had a boss that did that. I totally understand how that feels. I have people misunderstand me all the time even when I am logically and factually correct and yet they say that I am wrong or not worth listening to because I am Autistic and they don't get me. But I am forced to listen to them and make efforts to understand them. That is real hypocrisy. And it is funny that they would treat you that way at Bible study. If they only knew how Jesus totally destroyed social structure and how a lot of the people that we admire in the Bible were actually very Autistic in their way of thinking and acting. Go figure.

You know what is really crazy? We mentioned how it is important for Aspies to learn to be good people and learn to be respectful and considerate and to listen well and all that social stuff that is considered acceptable. Well the truth is that if everyone else learned to do that, we would not have a lot of the issues that we have as Aspies that make us seem unacceptable to others. I am really amazed at how Theory of Mind is so nonexistent with most people. That is not just an Aspie thing. If everyone held themselves to the same standards that they want to hold us to, we would not have all the issues we have.

AS people want and deserve services tailored to their needs and neurology. In another thread we are discussing the issues that AS people have when they seek help from NT suicide prevention services that are designed and run by NTs (for NTs, but they never admit that). Expecting AS people in crisis to "adjust" to NT models of service provision is both dangerous and cruel. No wonder those that can't adjust to the open questions, to the NT assumptions, to the phone model feel cheated as well as desperate. The more I think of the assumption that neurodiverse people should just "adjust" to neurotypical models of suicide prevention, the more concerned and angrier I get. The service providers are setting up neurodiverse clients to fail, by failing to recognise and cater for their needs. Gosh, the forms of discrimination we face are much wider than generally acknowledged, even on Wrong Planet.

Okay so in this case don't you think its ridiculous when people tell me I should stay who I am in response to my telling them I want to learn some manners?

Since my comment about stinky candle was an example of bad manners, don't you think it was ridiculous that she actually stopped burning that candle? I mean, from my perspective, I shouldn't have made that comment on the first place, but I did. Now when I do something I shouldn't have done, I want to go back in time and pretend like I didn't do it. Like in math, if I make a mistake in my calculations, I cross it out and continue my calculation from the previous line, before I made that mistake. So lets go back and pretend that I didn't make that comment. If I didn't make it, she would have still be burning that candle. Right? Well, so she should keep burning it, at least thats how I see it. But it took for me like 20 different requests to get her to continue to burn it.

Or here is even better example. Professors were refusing to work with me because presumably I wasn't interested in what they were doing and was preferring to do my own line of research, different from theirs. But in actuality that was another case of bad manners: what I should have done was to listen to what they have to say, asked some interesting questions, and only after that told them about my own intests if there were time. But, instead of doing that, I just started going on and on about my own interests after the first thing they said that remotely touched on them, and this lead them to believe I weren't interested in what they do. So they were telling me "you have to be who you are, you have to do exactly what you want to do, so please find a professor that would accommodate your needs". But thats ridiculous. There is no such thing as student doing EXACTLY what they wnat to do. What they SHOULD HAVE been telling me is "please learn some manners when it comes to listening first and speaking after that". But they didn't want to tell me that no matter how many times I was pointing out this obvious thing.

So yeah thats what I find frustrating. Sometimes I wonder what would have happened if I were to live few decades earlier when autism was unheard of? Maybe back then they WOULD HAVE asked me to have some manners. But in today's autism-aware world they are too eager to tell me to be who I am.

I cannot tell you how many times I have called numerous crisis hotlines and been so mistreated that if I had not trained myself to overcome suicidal urges, I would have committed suicide because of the call to the crisis hotline. I have been hung up on several times by the hotline people because I was not answering the questions they were asking in the way that they wanted me to. I have also called for help and rather than getting help, had the hotline people misinterpret the call and I ended up in handcuffs, thrown into a police car and carted off to the hospital where I was bullied and mistreated in the ER for almost eight hours, then locked up in a psyche ward for two days, only to be told later that it was all a misunderstanding and that I had not needed to be there.

It surprises me that there is overwhelming silence on this issue, even from prominent and thoughtful AS advocates themselves.

This might be - partly -because advocacy and negotiation to create new services require skills that are learned, rather than something fundamental to anyone's neurology. I was in my forties before I began to acquire these to the level of effectiveness, and it takes some time.

This is why I think the need for mentoring is really important to AS people. Especially those who want to make a difference that benefits the neurodiverse community as a whole.

It's a tough challenge. I am directly in contact with the mayor of my town and my state representative trying to figure out how we as Aspies can become employed to really start making differences in these areas. It is like talking to a wall sometimes trying to deal with these people but now that some of them have Autistic children, I think they will take me more seriously. They don't want their children ending up dealing with the horror stories that I have been telling them about how our generations are being treated.

I think there are reasonable accomodations and then there are unreasonable demands, and I think people on the spectrum should recognize that even NTs also have their limitations. I don't think NTs are necessarily any better at flexibility and empathy than those on the spectrum are.

MB, commenting to your friend about the fact that the candle scent it not a scent that you like is not changing who your friend is. You are not forcing her to dislike the scent or forcing her to like a scent that you like instead. She was not forcing you to like the scent that she likes. So she was not trying to change who you are. All she did was to make the air more pleasant for you. It did not bother her to do it. It did not make her change how she feels about the scent. It was just a small act of kindness to make the air nice for you. That is all. She just adjusted the environment, not herself. When I ask my neighbors to turn their music down or wear headsets, I am not asking them to stop playing their music for themselves or to change how they feel about the music they like. I have music that I love and play for myself all the time. But I cannot have the neighbors invading my home and my personal space with their music and I do not invade their homes with my music. Invading my home is bad manners. They don't have to change who they are. They can continue to love that God forsaken racket they think is music. But they are not entitled to play it in my home or in my car and that is what they are doing when they blast it as loudly as they do.

I think that people on the Spectrum often have more empathy and flexibility than NTs.

I would agree. At least more than we are often given credit for anyway.

What I said was between the two, probably something like "ewwww why is it stinking like that". But you have to get the context. First of all, I didn't have a concept that there is such a thing as a candle with that kind of smell. If someone were to say something to me about smell of candles, I would think of a natural smell of wax, the type you will smell in church -- and the smell in that room was totally different from that, which is why I had no idea it had anything to do with a candle. I assumed she just didn't clean the room or something and perhaps had some stinky pieces of food. The other reason I made that assumption is because my own room is super messy and smells of rotten food, so its only natural to think in this direction when someone else's room smells.

But, be it as it may, I didn't realize that my comment was rude because she been to my room and been making some comments about it too (in fact, she took some of the stuff I been hording in my room into her storage). I didn't get mad when she was making comments about my room being messy because she did so in a playful way. So I was thought that if I make equally playful comments about her room, she wouldn't get mad either.

After I made that comment, she pointed out that it was rude, but I still didn't get it that I actually offended her. Because you see, shortly prior to that comment, I was discussing with her why do various other people (whom she doesn't know) don't like me. So I thought to myself that she was simply answering my question on how to improve my social skills and brought up this comment I just made as a nice illustration. So my response was to put a big smile on my face and think to myself "oh isn't it cute, I just saw an example of my making a rude comment without even knowing it, its kinda funny how my words sounded angry and I was actually in a good mood, and it might answer my question on how people misunderstood me in all those other instances".

But then when she saw that I didn't get it, she said that she was angry in a much clearer way. She said "first, you made a comment about my lipstick being sticky, then you talked to me about other women, then you almost forgot to carry the bag, then you made a comment about the candle, its just too much". But then I felt mislead, because you see I thought that the thing about her reminding me to carry her bag was also "just her answer to my question about my social skills" but now all of a sudden it turns out that she wasn't "just teaching me social skills" but actually she was upset. So I felt cheated, which caused me to be angry at her, and ultimately caused things to escalate.

Well, things didn't escalate right away, because she became sick shortly thereafter. Now, she is really sick in general, so she lives with her mom even though she is 34 years old. So her mom went into her room when she got sick, literally laid in the same bed with her (her mom was laying on one side of the bad, I was on the other side, and she was in the middle) and her mom was talking to her as if I wasn't even there. Then she took her to the hospital and she asked me if I wanted to come with her, and I chose not to come (probably the big mistake) because I wanted to finish my homework. Then few hours later when she came back from the hospital, I still haven't finished my homework, but I really wanted to sleep because I had few sleepless nights before due to that same homework, but then she kept pacing back and forth because she was on aderall so I was like "okay I am not going to sleep I might as well just work on my homework". So I worked on it all night long and then I had to go to school in the morning. I had a bag of clothes there, and I decided to take that bag of clothes to my place to do the laundary, but that was a bit of a passive agressive way of showing anger towards her: I was going to just walk out of the appartment with that bag without saying bye. I guess she stopped me by asking me why am I taking a bag and I was like "oh I have to do laundary". She did a few kind gestures, like giving me a ride from her house to a gate so that I don't have to walk with the bag before I catch uber, I deliberately didn't say thank you because I was mad at her. But at the same time I pretended like I weren't really mad, I basically acted passive agressively, so for that reason I deliberately "forgot" to ask her whether she was feeling better yet still was planning to come to see her that evening. But then in the evening she asked "are you sure you want to come" and I said "yes" and she was like "you don't have to come if you don't want to" and I was like "why not" and then she mentioned how her mom noticed that I didn't say anything when she was sick previous night and didn't ask her how she feels this whole day. So then I told her how I was tempted to walk out the house, and that is what lead to an escalation of anger.

Now, going back to the candle, given everything that followed that, I realized EVERYTHING that happened that night was a big deal, INCLUDING candle. THATS WHY I even noticed that she stopped putting it on (otherwise I wouldn't have paid attention) and thats why I kept nagging her to put it back on.



Well, its OTHERS who don't get it, not me. I mean, 90% of the time when I say I change and others shut me down with "you have to be who you are" it is about bad manners. So why do OTHERS tell me to be who I am if we are talking about bad manners. So clearly OTHERS are the ones who miss that distinction.



Okay, which one of those two things would cause me to be socially isolated? If I have wonderful manners but my brain just processes things differently, then I don't see any reason in the world why I would be ostracized. So the reason for ostracism is obviously manners. And, incidentally, not having friends is one of the symptoms of Asperger. So Asperger in general has manners component to it too, otherwise there won't be any reason in the world why people with Asperger won't have friends.

Now, in what context would I be discussing the fact that I want to change? In the context of my doing something others don't like. So once again its manners. So why on earth would others tell me "don't change, be who you are" in response to THIS. Obviously they aren't getting the difference between manners and Asperger, probably because they were too brainwashed by autism awarenness campaign or something.



I wasn't talking about the class. I was talking about research. Because, as a graduate student, I need to do thesis research, which is not class at all, but rather one-on-one interaction with a professor. So the professors refused to be my thesis advisors because of the way I acted when we were discussing possible thesis topics. When I am in class I know better than that; and besides, even if I did derail a class in the direction of my interest (which I wouldn't do) it would hardly warrant kicking me out of class. But when I am doing one-on-one research, it is a lot more subjective than the class, I weren't expecting that kind of level of subjectivity, which is why I didn't know how to deal with it properly.

Now that you are explaining more detail, I am understanding much more of what happened. I think there is a combination of Asperger's and manners issue so it gets a little complicated. I think when things like this happen, people just have to be patient and take a lot of time to communicate honestly and clearly about what they are feeling. And this is important for them and you to do together, not just one side. I think the biggest problem that happens is that people get angry and upset very quickly and react. If they could really slow down the conversation to give each person a chance to really understand what the other one is thinking and feeling, the conclusions might be different.

For example, the situation with the candle, you did not know about scented candles. That is reasonable. In your own experience with your room, you are used to a room which is really messy and smells really bad. Just out of curiosity, why do you keep your room this way? Anyway, you are used to your own room being the way it is so you made an assumption about the smell in her room based on what you know about your room. This is a very normal way that people make assumptions. They make assumptions based on what is familiar to them. Your assumption was offensive to her, that is also reasonable. So far everything that has happened is understandable.

Now here is the hard part. It takes an extremely mature person to not react emotionally to feeling offended like this and to calmly dig a little deeper and find out why you made the comment that you made. Most people will not be able to do that. But sometimes that is the kind of work it takes to be able to have good and honest communication where we can really understand each other. And if we are willing to stay calm and not react and talk further, we can teach each other the skills that help us handle these kinds of situations in the future. But it takes an enormous amount of patience and self control to do that and it really helps if you genuinely care about the other person and really want to know why they said what they said. You have to have really good listening skills to be able to do this.

I find that when I am in a similar situation, where I am having a conversation with an NT especially, the person I am talking to does not have the patience to really calmly dig deeper to really understand why I said what I said. The person just reacts to a "buzz word" and then the situation escalates to a screaming argument and I end up have a headbanging screaming meltdown. And then of course, I get blamed for being out of control and having a meltdown.

For example, I had a boss who used me to teach everyone about Autism and every time she saw something about Autism she would share it with me. She showed me an article in a book written by a big time lawyer and I was reading it. She was sitting at the table with me. The article was basically a definition of Autism for lawyers. I think she wanted me to be impressed with what the author wrote because of who the author was. Well I was not impressed at all. It was basically just the little bit of stereotypical stuff that you see everywhere. And it was written in absolutes.

One of the sentences said that Autistic people do not understand what others are thinking or feeling. I pointed this out and told her that this sentence was not true. Rather than asking me what I meant and why I said that, she started yelling at me and attacking me because I was disagreeing with this big time author whom she had a lot of respect for. If she had calmed down and asked me what I meant and why I said what I said, I would have told her that you cannot write a sentence like that as an absolute. There are many times when Autistics do not understand what others are thinking or feeling but there are equally as many times when non Autistic people don't understand what we are thinking or feeling. There are many times when nts don't understand what other nts are thinking and feeling. And there are many times when Autistic people are so incredibly empathetic that they empathy we feel completely overwhelms us and shuts us down. There are times when I could understand what someone was feeling better than the person himself could. My same boss who was yelling at me at that moment had often commented how I could sometimes understand what my client was thinking and feeling better than any of the other caretakers because of my Autism. She would also say that I could sometimes understand the deep things that she feels and goes through better than anyone else that she knew because of my Autism and my ability to empathize deeply which is part of my Autism. So, in my opinion, I think that it is wrong to make an absolute blanket statement that says that no Autistic person is every able to understand what anyone is thinking and feeling in a book that is supposed to be for lawyers to help them understand and help their Autistic clients. There should have been much more written about that and a much deeper explanation about the subject. What he should have said, "Many or most Autistic people cannot easily or intuitively guess what others are thinking an feeling." Saying that is very different from what he actually said. His words should have been much more precise. And many nts, including my boss, will tell me that I should have just known what he meant and that it is because I am Aspie that I did not know and that I needed the words to be precise in order to understand. Well that is exactly my point.

But because my boss could not have a deeper conversation about this and ask me what I meant but simply reacted very strongly because I have a differing opinion from an author that she respects, she blew up at me and pulled the Autism card to accuse me of not being able to have a reciprocal conversation and accused me of making her upset with what she assumed was a "rude, inappropriate, and judgmental" comment. If she had calmed down and dug a little deeper she would have ended up agreeing with me. But instead, she had a completely emotional reaction based on social status. And in her emotional reaction, she concluded that I had no idea what I was talking about before she even knew what I was talking about. And in her mind she equated that with me being Aspie. So because the author is someone she respects socially more than me, in her socio/emotional understanding, the author is absolutely correct in whatever he says and I cannot be correct if my statements change or challenge his. But she can never admit that this is where she is coming from and how she is coming to her conclusion in that moment. She is not even aware that this is what she is doing. All she is aware of in her own mind is that the author is right, I am wrong, simply based on social status position. And since being Aspie determines my social status position, I am automatically at the very bottom of the social ladder in this situation. So in her mind, in this particular situation, there is nothing I can say or do that will make any sense to her. She has made up her mind, put me where she has socially put me and that is the end of the story.

So bottom line is that we could analyze all of this to death but what is better and more powerful is that people learn not to react in conversations but to take the time to really make the effort to try to understand one another. If we can do that, we will be able to respect each other much more, teach each other as we go, and avoid a lot of emotional stress.

Last edited by skibum on 27 Apr 2018, 9:42 am, edited 6 times in total.

But the example I just posted about how the conversation I had with my boss, is literally an example of a time were I was told that I needed to adjust and not challenge or question anything this author was saying about Autism and just praise my boss for having bought this book and learned something more about Autism. Because I am of a lower social status than my boss and the author are, it is not considered my place to challenge these people. But that kind of thing is not something I will ever be able to "adjust" to. I have no social awareness. I cannot adjust to how people are constantly changing how they make decisions about me and about my competence depending on where they want to put me on a social ladder at any given moment. I will get blindsided every single time. These conversations will erupt into headbanging meltdowns every single time.

The reason they erupt is that people are expecting me to respond to them not according to facts and truths and logical sequences and things that make sense but to whatever social response is appropriate for whatever part of the social ladder they want to put me on at any given moment. Without social awareness, I often have no ability to respond from a social standpoint. Now I have learned a few basic appropriate social responses over the last 51 years, but no where near enough to engage in and keep up the complex social conversational webs that socially based people make. A lot of that stuff is based on unwritten social rules that I might not even know exist. And the rules are constantly changing without warning. So without a playbook, I have no way of understanding these things.

Now to challenge the Author's statement, I might have no idea what is socially going on in a conversation, but if someone sits down with me one on one and has an honest and true conversation about what she is really thinking and feeling and you uses words that actually say what she means and she speaks clearly and completely, I can absolutely understand what she is thinking and feeling. Sometimes I can understand it better than the person telling me can understand it herself. It's not that Autistic people can't understand what others are thinking or feeling, maybe some Autistic people really can't but a lot of us can understand just fine. The reason we don't understand is that people don't tell us what they are thinking and feeling. They expect us to guess and figure it out without ever directly telling us. And they do the same thing to us. I am constantly being accused of feeling or thinking things that never even cross my mind because rather than asking me what I am thinking or feeling, people just assume based on their own experiences with themselves. Then they hold me accountable for their assumptions.

It reminds me of a Dr Phil episode I saw once. The husband wanted Dr Phil to yell at his wife because he kept having dreams in his sleep about her dating an ex boyfriend of hers. He accused her of really doing what he was dreaming about in his sleep and he wanted Dr Phil to reprimand her for his assumption which was not based on any reality at all but on his dream. Yeah. Pretty messed up. But that is exactly what people do to each other. And we have all done it, even I have done it and every now and then catch myself doing it again. People make decisions about others and hold them accountable based on their own assumptions rather than finding out what the person is really thinking and feeling or doing. That is a lack of Theory of Mind and we ALL suffer from that, not just Autistic people.

The key is, since we all do it, that when we catch ourselves doing it, or when it is pointed out to us, we should stop and change and really try to understand the other person's motives and reasons for doing or saying whatever he said or did. But many people are not capable of changing their course in this. They are stuck thinking that they are right about their assumptions of the the other person's motives and try to prove that point at all cost. That is the biggest problem and it leads to a lot of stress and heartache.

These lack of Theory of Mind attacks by other people are not something that I can every adjust to because in order for my brain to process a concept it has to make logical and factual sense. This is because of my Autism. If you want me to accept a concept as truth that is factually and logically senseless, faulty and incorrect, I cannot accept it as truth. So I cannot adjust and just accept something as true because it fits someone's emotional or social status box if it has no factual or logical truth to it. And since everyone's emotional and status boxes are different, there is no consistency in that. Because I am not a social thinker and I have no social awareness, and because I am not a purely emotional thinker like some people are, it is not reasonable to demand that I adjust and hold my convictions and understandings purely on a social or emotional standard. I have no concept of those standards. It is not possible for me to do that. So if people want me to adjust and make life decisions and base my convictions on these standard, it is never going to happen. I should not be judged solely by these standards. But social and emotional thinkers expect me to submit to their way of thinking every single time but they will not give me the courtesy of sometimes trying to adjust themselves and make conclusions based on facts and logic. Because I am Autistic, I am considered lower on the social scale. So they think it is my job to only constantly adjust to their ways of thinking rather than for them to try to understand my way of thinking and trying to find a suitable meeting point that works for all. That is not fair.