Do people with milder forms of autism suffer more?

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27 Jul 2014, 11:42 am

I've almost fully recovered from my depression but still have some ways to go. Along the way I have made improvements to appear more normal (NT). I have noticed that I have been getting more smiles from women but also been noticing A LOT MORE coldness from some people. I kinda miss the compassion I use to get. I feel like some people are intimidated by me. I'm curoius what you all have to say about this. Thanks.



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27 Jul 2014, 11:58 am

In certain ways.


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27 Jul 2014, 11:58 am

I have a friend with mild autism. I myself have great difficulties with autism (not been given a level but I'm supposing moderate autism). My friend copes a lot better than I do.


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27 Jul 2014, 12:02 pm

For now, I agree that those of us with mild-severity Asperger's Syndrome and Autism Spectrum Disorder are sometimes expected unfairly to always act as if we didn't have it at all. I blame the slowness with which most NTs are discovering that the spectrum is a spectrum and that severities aren't always identical among us. In fact, like many other Aspies, my severity (usually level 1 mild) can be quickly turned into something more with the wrong stims. While I can mask well, it is exhausting to do so, so it comes at a cost.


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27 Jul 2014, 12:21 pm

I would not say that we suffer more. I think we may suffer differently. Whether someone suffers more or less is more individually based. I really think it depends on each person and his or her unique situation. I do think that people who have milder forms of Autism like myself, do suffer a lot but in different ways than people who are severe. Like AspieUtah said, people can't look at us and tell that we are different from them so they have expectations of us that are sometimes very difficult or even impossible for us to meet. Then when we cannot meet them or meet them to the satisfaction of the people placing the expectations or demands on us, rather than realizing that we have a physiological and genuine reason why we can't do what they expect, they insist that we are lazy or defiant. And this adds another level of stress and anxiety to the situation. I think people who are obviously disabled as in people can look at them and see that they are different, like if someone is in a wheelchair or if someone is nonverbal or has a physical appearance that shows a disability, people may have more compassion on that person and not automatically assume laziness or defiance.

People have also accused me of having a bad attitude and then yelled at me and insisted that I change my attitude. My attitude was fine it's just that I might have been socially exhausted so I looked disinterested which people mistook for rudeness. I have also had people discuss this exact situation amongst themselves with me right there in front of them. I listened to them discussing amongst the group how angry and disrespectful I was and they talked about it for about five minutes and nobody bothered to ask me how I was feeling or why my face looked the way it did. And it was really ridiculous. I had just found out a few minutes before that someone that was part of another forum I belong to had died in an accident and I was a little overwhelmed. And the group had been having a discussion that was really exhausting to me as well. So I was not angry in the least, just socially exhausted but because of how my face looked they all decided that I was angry and the speaker said that I was angry at him and they sat around and talked about how I get this way a lot. No one talked to me, just about me. When I eventually told them that my forum friend had died and that I was a little overwhelmed my that, one of the girls got mad at me and said that I was a Sh**ty friend because I did not just announce it to them right away and made them look stupid. I guess she did not realize that I needed time to process this information before I could share it with them.


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27 Jul 2014, 12:28 pm

Do you mean milder as in their traits are not obvious/easier to hide if necessary/are not so severe that they are clearly "different"? I personally would not like to measure the suffering of a more severely affected person against someone who, for the sake of a term to give it, is "closer to NT" or on the lighter end of the spectrum, as I would describe myself, for example. Because I can't even imagine how difficult must be the trials and challenges of someone deemed to be in the low-functioning category.

There are people on the spectrum who would literally die without a great deal of practical assistance in living, and I couldn't sleep at night if I tried to claim that they have it better than I do. There is also the issue of bullying and taunting that may happen to someone who is more severely affected by autism, whose traits are so clear and so impossible to cover up or fake/hide that cruel people will seize upon that. I couldn't possibly say that I feel my experiences are as tough as that of the people who face that.

However, having said that, there are certain ways in which being "milder" or in other words having less visible or less detectable traits can cause less clarity in the reactions of people around you, and more confusion.

When someone has very strong traits that can't help but show in the person's manner and general presentation, the one favor that might bestow is that other people get to have a much clearer "heads-up" that this person experiences their world differently, reacts in ways the other people may not understand, and therefore those people may need to adjust their own responses to that individual.

By contrast, in a so-called "milder" case of autism/Asperger's, where the person is so-called high functioning, and can often present as just like "everyone else," I think a lot of confusion can arise in the people around them. And where there is confusion, close behind can also follow anger, resentment, misunderstanding, maltreatment, accusations of mistaken causes of the individual's traits, actions or reactions....

When it's not clear what's different, nobody can accomodate the person. By that, I do not mean make excuses for bad behavior -- not at all. But I mean give compassion to the person's stress reactions, understand their issues, take on board that even though they seem "mild" and may look like "a normal person" (whatever that is!), in actual fact they are not experiencing the world in the same way, either, and have issues that also require other people to adjust their own responses.

Milder "normal-seeming" people on the spectrum, it seems to me, may get a lot harsher judgments made upon them for any behavior that strays from the norm, because people have usually already taken for granted that that person is no different from them, therefore wonder "What the heck is going on?" when the person cracks and a meltdown, shutdown, severe stim or other unexpected thing reveals that they are not.

This is a very tricky subject though. I think a more severely affected person can suffer more challenges in everything they deal with in life, but can also find themselves receiving more readily forthcoming compassion -- but also more readily forthcoming abuse and cruelty.

A milder person can seem so "normal" that they may have fewer challenges and cope better with the ones they do have -- but they also face potential anger, lack of compassion, and no leeway from other people when they do mess up, break down, meltdown, or have difficulty coping, because other people "expect more" of the "normal seeming" person.

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27 Jul 2014, 12:44 pm

hihowareyou wrote:
I've almost fully recovered from my depression but still have some ways to go. Along the way I have made improvements to appear more normal (NT). I have noticed that I have been getting more smiles from women but also been noticing A LOT MORE coldness from some people. I kinda miss the compassion I use to get. I feel like some people are intimidated by me. I'm curoius what you all have to say about this. Thanks.


I think this is another one of those questions where the answer is depends on the individual with autism. I still have ongoing depression, sort of gave up on fully recovering, because I've figured out it sort of cycles from bearable to unbearable....at first I figured I actually was 'recovering' but then it goes downhill again every time.

I have learned various things about interaction, and since I know I can miss body language and things and take things litterally I try to take those things into account when interacting...but I doubt I appear more NT, and since I am not an NT not so sure I'd see seeming like one as an improvement. I never really got a whole lot of compassion or anything, for one I wasn't diagnosed till I was 23 and even then its not like everyone suddenly got more compassionate...I still end up having to explain 'no I am not looking for work at this time as I am on disability due to inability to work' to my moms side of the family during family get togethers and it gets on my nerves.....people are quick to say 'just don't use it as an excuse, make sure you aren't using it as an excuse.' and its like hold up a minute an excuse for what even, in some situations it is an explanation for things but its like they think I am constantly looking for an excuse for something which I don't get.


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27 Jul 2014, 1:08 pm

I guess I can only speak for myself. I don't even know how severe my autism is. Many people are cold/hostile toward me. Most people seem to pretend that they don't even see me when I'm around. Nice people are polite but they seem rather awkward. It's been like that all my life - hostile people and polite people. It's impossible for me to join any kind of group because I know I will be an outcast. That even prevents me from having a career despite my education. In my current work, I'm a laughing stock because I'm weird. People don't want to be associated with me because I'm an embarrassment.

Can you call it mild? It's affecting my standard of living as I can't have a decent job. It's affecting my quality of life as I have few friends. I'm functioning fine in most other ways (except not being able to drive). It's mostly people-related side of my autism that's making life impossible for me. So I'd say my autism is mild but life is extremely hard for me.



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27 Jul 2014, 2:27 pm

I have certainly met people with rather mild autism who are suffering a great deal, usually because of prejudice and mistreatment. They are compared to (or compare themselves to) neurotypicals a great deal, with NTs held up as the ideal. People with more severe autism are not expected to be "normal" to the same extent, and so escape that particular type of suffering.

I can't make a blanket statement, though. Each person's experience of autism is individual.

However, I do wish people realized that the amount of suffering (or lack thereof) has very little to do with the extent of the disability. It hurts both sides. Severely disabled people are assumed to be suffering greatly, their lives not worth living; mildly disabled people are assumed to be near-normal, just a bit quirky, and their suffering is dismissed. And the possibility that a disabled person might be living a joyful, satisfying, meaningful life? Gets ignored altogether.


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27 Jul 2014, 3:08 pm

Callista wrote:
Each person's experience of autism is individual.

However, I do wish people realized that the amount of suffering (or lack thereof) has very little to do with the extent of the disability. It hurts both sides. Severely disabled people are assumed to be suffering greatly, their lives not worth living; mildly disabled people are assumed to be near-normal, just a bit quirky, and their suffering is dismissed. And the possibility that a disabled person might be living a joyful, satisfying, meaningful life? Gets ignored altogether.
I agree totally with this.


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27 Jul 2014, 3:28 pm

Callista ---

I would never, never suggest or believe that someone severely affected with disability is suffering so much that their "life is not worth living."

Every life is worth living, and I know of at least one member here who is severely affected yet I can very clearly see that this person is an amazing asset to society, also to this place, and that they themselves are having a fulfilling life, possibly more so than I am, I can completely conceive of that.

I hope my comments in my initial post were not interpreted as my thinking someone severely disabled by their autism doesn't have a life worth living, as that is not what I meant, and I would never in a million years intend that meaning.

I also never meant to suggest that there is direct correlation between severity and suffering, hence the very disabled person must be suffering emotionally far more than me. I was thinking more in terms of my own set of circumstances making certain things in life easier for me therefore I shouldn't complain.

And I merely meant to convey that I would feel ashamed of myself if I walked around believing that life was outright easier for the more clearly disabled than for me, because the next thing I had to say would sound like that's what I'm saying. I was trying to pre-empt that assumption.

This is why I also said this is a tricky subject.

No matter what answer a person gives, they're" damned if they do and damned if they don't" play down their own troubles.

I do agree with the notion that people with milder autism often suffer from greater "NT expectations from themselves or others, and those more disabled don't have to deal with that particular expectation/stress. That was what the second half of my own post was pointing out.

To be honest, I feel pretty pissed off now, because yet again I feel that someone has glanced across this thread, caught some of a post of mine, and then completely misunderstood what I said and taken it the whole wrong way.

Why did I expect to find likeminded people here who "get" me? I'm constantly taken the wrong way on this place. I tried SO HARD to word my initial post SO carefully.

I knew there was a danger of being taken the wrong way and I really, really thought I was carefully choosing my words. Yet I feel a total spin has been put on what I said.
.



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27 Jul 2014, 3:39 pm

Birdinflight, I don't think that Callista was responding specifically to your post. I think she was saying that there are people, not you specifically, but that there are some people in general who feel the way she described. And from things we have seen on the news and read in news articles there are actually people who do feel that way. But I am pretty sure that she was not addressing your post specifically.


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27 Jul 2014, 3:51 pm

Hi skibum; yes, I really hope I'm jumping to a wrong conclusion, because, sincerely, that is not what I meant in any way, shape or form.

It just sounded very much like that, as I think I was the only person in the thread that brought up something that could be interpreted as that unfortunate viewpoint.

All I was trying to do was be sensitive to the fact in relative terms I feel humbled by those who have perhaps less autonomy or freedoms in life than I have, yet they are in fact doing much more with theirs than I am with mine, and probably being more joyful and productive than I am with my arguably greater ease of movement through life, hence I feel bad even trying to say I might have it "worse."

It's a balancing act and I was striving to be sensitive and make sure it's known that I realize I'm not even doing all I could do with my milder case.

I feel very sad.

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27 Jul 2014, 3:56 pm

I don't think suffering can be directly compared between people -- not reliably/accurately. It is too subjective.

Suffering is suffering. It all deserves acknowledgement and compassion.


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27 Jul 2014, 4:47 pm

animalcrackers wrote:
I don't think suffering can be directly compared between people -- not reliably/accurately. It is too subjective.

Suffering is suffering. It all deserves acknowledgement and compassion.

That's true. People express themselves differently. For example, some are able to cry around people while others only cry when their alone. There's all kinds of factors that would make it essentially impossible to compare suffering.

But I understand what OP is getting at. Aside from anxiety and possibly Asperger's, I stutter. No one considers that a serious disability. Mainly because if I don't talk then I'll seem normal. People expect me to do and behave like others even though I have great difficulties with speech. That can be very frustrating. Even when people know I stutter the most they'll do is be patient. While still approaching me with a group of people. Is it that hard to figure out I'd prefer talking one on one?

Apparently it is because they both don't get what it's like AND don't understand I'm different enough that I should be understood differently in the first place.



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27 Jul 2014, 5:31 pm

BirdInFlight wrote:
Hi skibum; yes, I really hope I'm jumping to a wrong conclusion, because, sincerely, that is not what I meant in any way, shape or form.

It just sounded very much like that, as I think I was the only person in the thread that brought up something that could be interpreted as that unfortunate viewpoint. No worries, Birdinflight. I did not think you bad intentions at all. I figured you just misunderstood Callista. That sort of thing happens all the time especially in a forum format. It's all good.

All I was trying to do was be sensitive to the fact in relative terms I feel humbled by those who have perhaps less autonomy or freedoms in life than I have, yet they are in fact doing much more with theirs than I am with mine, and probably being more joyful and productive than I am with my arguably greater ease of movement through life, hence I feel bad even trying to say I might have it "worse." I know what you mean. One of my heroes on this forum is Kingdomofrats. She is a real advocate and an inspiring example of someone who has taken her challenges and embraced them and used them to help so many others. I am high functioning but I don't feel like I am able to be half as successful as she is. It is very humbling. But I really think it's great that success is measured in so many different ways. People on whom the world tends to look down on are sometimes more inspirational and powerful than people who look like they are the successful ones.

It's a balancing act and I was striving to be sensitive and make sure it's known that I realize I'm not even doing all I could do with my milder case.

I feel very sad.

It is definitely a balancing act and a difficult one. I feel that way as well. But I think that we have to be careful not to too hard on ourselves. I have a tendency to be hard on myself. But even with those of us who are milder on the Spectrum the challenges are difficult. I always loved the thought that each person's challenges are just as challenging to her as someone else's challenge is to him. And something that might be really hard for one could be equally easy for another. So we really should not be hard on ourselves judging and comparing ourselves to others. I think we should use the difficulties of our personal challenges to help us become less judgmental and more compassionate and encouraging towards others even if we would not be challenged by the same thing they are challenged with. You never know when someone like Kingdomofrats will do something to help someone like me that could change and encourage my life. I have learned so much from her already and I can only hope that I am an encouragement to her. But don't be sad. It's all good.

.


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Last edited by skibum on 27 Jul 2014, 7:43 pm, edited 1 time in total.