Do people with milder forms of autism suffer more?

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dianthus
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27 Jul 2014, 6:09 pm

What is "mild?" If a person is viewed as "mild" they may have too much expected of them and be unable to cope. Having too many expectations put on you can lead to suffering. But so can having too little expected of you. I don't think you can quantify how much a person is suffering. But if a person is suffering I would not call their condition mild. Being classed as mild may be what is causing their suffering to begin with.



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27 Jul 2014, 6:51 pm

regardless of where someone is on the spectrum,it isnt anyone up to anyone else to generalise groups of people as suffering more than another,suffering is a concept that can only be decided by the individual themselves.

aspies/HFAs have a harder time in terms of societal expectations which will have a knock on effect on mental health but those of us with LFA have a harder time being accepted by society as human,we are betrayed by our own race,we are abused and the target of pity and negative assumptions every time we go into public-we are completely unable to mask our disability and our autism,so we are taken advantage of more as a result,am sure regulars here will remember the long term stalking,identity stealing, grooming and severe bullying had suffered here from a member,as am probably the easiest target on WP,being intelectualy disabled as well as unable to communicate the issues to those IRL.

the other difference between HFA and us
is that we have very high complex needs which creates a lot of challenges for us.
we also cannot function at all without people supporting us through every step of the day,whether its with toileting, personal care,significant understanding and communication difficulties, advocating for us in profesional situations,severe challenging behavior etc.

however,have never felt am suffering because am severely autistic,to self it seems quite negative to feel suffering for something were born with and have never known any different but am not denying peoples right to say theyre suffering,its just something that find hard to understand.


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Waterfalls
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27 Jul 2014, 8:41 pm

It's sad what KoR wrote about having a difficult time being accepted as human.

I don't doubt that people with LFA have a harder time being accepted as human, but not being accepted as human is something that continually recurs and which I struggle with. I think that's what motivates a lot of my effort to fit in, and that's what's driven me almost out of my mind as I've interpreted not being treated as human quite literally as meaning not entitled to be human, not entitled to be alive.

It's hard to imagine the kind of inhumanity that would let that be worse, but yes, I can see glimmers. It's very, very sad that such inhumanity exists.



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27 Jul 2014, 8:58 pm

Waterfalls wrote:
It's sad what KoR wrote about having a difficult time being accepted as human.

I don't doubt that people with LFA have a harder time being accepted as human, but not being accepted as human is something that continually recurs and which I struggle with. I think that's what motivates a lot of my effort to fit in, and that's what's driven me almost out of my mind as I've interpreted not being treated as human quite literally as meaning not entitled to be human, not entitled to be alive.

It's hard to imagine the kind of inhumanity that would let that be worse, but yes, I can see glimmers. It's very, very sad that such inhumanity exists.
You know what is interesting is that even as a very high functioning person I have felt that way very often. I remember feeling that way even as a little kid and sometimes I still do. I am sure that KOR gets it more because others might treat her that way but I know that I have felt that way. But I guess it must be so much worse when others actually treat you that way.


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Waterfalls
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27 Jul 2014, 9:16 pm

skibum wrote:
You know what is interesting is that even as a very high functioning person I have felt that way very often. I remember feeling that way even as a little kid and sometimes I still do. I am sure that KOR gets it more because others might treat her that way but I know that I have felt that way. But I guess it must be so much worse when others actually treat you that way.

Skibum, I am curious. If you are comfortable saying, do you mean that although you sometimes feel you are not accepted as human, others treat you as just as human as anyone else?



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27 Jul 2014, 11:03 pm

skibum wrote:
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.
That's correct. I wasn't addressing any post specifically; I was addressing the subject in general.

I may be a little sensitive because I've had some bad experiences in the past, where I would see mentally ill or disabled people put each other down--not even in a truly malicious way; it was more like they were trying to save themselves by focusing prejudice and non-personhood on some other group, as though they had given up on having the power to band together and stand up for each other.

When I get into a discussion about people with different types of autism, different severity of disability, I usually feel a very strong need to insist on equality and on listening to what everyone is saying, whether they are shy or assertive, verbal or not, young or old, very disabled or only a little impaired, happy with being autistic or hating every minute. Disagreement is fine; we can argue till we're blue in the face and there's nothing wrong with that--but we've got to be willing to see each other as worth fighting for, even when we're very different.

I guess I'm scared that we'll lose our courage and start throwing each other under the bus to try to save ourselves, because if we ever do that, it'll mean that we've lost.


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27 Jul 2014, 11:44 pm

Up until two years ago, my mum wasn't too thrilled that I got my life back on track and started being myself. She was expecting me to be a carbon copy of my *cough* same sex peers instead of being the Kinks like Mod that I am, inside and out. I was almost ready to tell her that if she couldn't take me as I am, instead of expecting me to be Rosanne Arnold, that I wasn't going to have any contact with her until she was able to take and accept me as I am. I didn't have to tell her those things, because she apologized to me just in time. I was expected to be like my *cough* same sex peers in every way that would sabotage my true self , because I'm pretty mild. My mum didn't seem to realize that I am The Kinks and the 60s (before the hippies and after the squares). My mum didn't realize that she was trying to snuff my personality out so I could be Roseanne Arnold just like my *cough* same sex peers. The years 2009-2012 could have been even happier for me if she realized what she was doing sooner. We're expected to be clones of NTs of the same *cough* gender.

I'm glad I look and operate like Mick Avory and I'm not just saying that because of my mum. I'm a gentle, sensitive soul instead of Roseanne.


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27 Jul 2014, 11:52 pm

i think it's gotta be tough being in between like that. Like close to NT but not close enough. my autism and dyspraxia are severe enough for me to never be mistaken for NT, so i don't have to struggle with that.



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28 Jul 2014, 1:13 am

I think one of the big challenges is getting into employment.
For those with more obvious Autism people can see they have Autism for people with less obvious form I think there is an expectation we should just fit in and in small bursts we can.

I find in my life I always want more but the more I get the more stress I experience trying to maintain it.

Being on the Autistic Spectrum certainly makes life harder.

I can hide my autism but not for any great lengths of time.

I have to a large extent accepted myself however coming here to compare notes with other people on the spectrum is therapeutic.



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28 Jul 2014, 5:42 am

skibum wrote:
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....


This.

I think mild-AS people have it worse BECAUSE we often are not recognized as Autistic (often never Dxed as kids/teens) and we are hurt for the lack of understanding of our own condition and being held to unattainable standards.

In contrast, more severe-AS people generally KNOW there is something wrong, and they have the benefit of that knowledge and acceptance of how it will impact their lives.

I grew up with a severely retarded (accurate description) kid who (last I know) worked as a bagger at a grocery store. At the time I last saw him, I felt pity for him because I wonder if he comprehended all the possibilities in life he could never know because of how being retarded affected his life.

Now that I know about AS, and have a lifetime of failure to show for it, I sometimes wonder if this retarded kid is blessed compared to me. Not so much of "does ignorance = bliss" but if I knew I would NEVER attain certain goals, would I be happier knowing that and NOT wasting time and effort going after things I could never have but make my peace and pursue what is attainable for me?



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28 Jul 2014, 6:36 am

Waterfalls wrote:
skibum wrote:
You know what is interesting is that even as a very high functioning person I have felt that way very often. I remember feeling that way even as a little kid and sometimes I still do. I am sure that KOR gets it more because others might treat her that way but I know that I have felt that way. But I guess it must be so much worse when others actually treat you that way.

Skibum, I am curious. If you are comfortable saying, do you mean that although you sometimes feel you are not accepted as human, others treat you as just as human as anyone else?
I believe that is mostly the case. It's kind of hard to accurately judge how some other people treat me. The people who are really closest to me and who accept me for who I am Aspie quirks and all, like my husband, my brothers, and I think my mom is starting to come to that point as well, they treat me well. I can feel that. Other people treat me well too but for most of them I have to be very careful not to let all of my Aspie traits show. I still have trouble letting everything show even with the people who accept me fully. My oldest brother is the only one with whom I am completely comfortable to let all my Aspie traits show. But a few people have treated me so badly that I wonder if they even understand that I have feelings at all. But most people treat me pretty much like they treat everybody else either because I have told them that I am Aspie and they kind of know that there is a physiological reason for my quirks or they treat me like everyone else because I manage to hide my Aspie traits from them. I don't know how they treat me behind my back though but I don't think it's bad.

But I never felt completely human especially as a young kid because I could not figure out why I did not relate to anyone. I could never figure out why I always felt weird or out of place or why I could not have those stand around the playground conversations with the other girls in middle and high school. When I was a little kid I did great but once I got to middle school is when that really started to change. I think middle school is when kids start to really notice differences and start to become really judgmental. I remember the whole three years of middle school only one girl ever invited me to her house and that was only one time. At first I thought it was because I was the only brown skinned kid in the entire school. My mom put me in a Catholic school for seventh grade because it was a better school. But even after I asked her to put me back in public school for eighth where the kids were not so stuck up and there were maybe three of four black kids, I still could not make any friends. I think only one girl ever came to my house to play with me that whole year and that was also just once.

But when I was that age, always feeling left out and awkward made me wonder if I was really a human being. I felt that I was concerned about different things than everyone else and I always wondered if I had different feelings. I was also depressed but no one explained to me what that was so I did not know that other human beings experienced that. I also had Misophonia and I did not know that other humans experienced that. The same thing with all of my sensory sensitives. And grownups had a habit of talking about me while I was in the room rather than too me and I knew that that is how they talked about animals but since I did not notice them doing that to the other kids I figured I must be more like another animal than a kid. I also did not dress like the other girls at school because I just liked what was comfortable to me and I did not care or appreciate fashion or makeup or styling my hair. I wore clean clothes that matched, I was and am good with colors, but I liked jeans and sporty tops and sneakers. I always thought the other girls were pretty because they tried to dress nice and some of them wore makeup but I never thought of myself ever being able to do what they did. Those things always felt foreign to me and because I was very athletic they also seemed out of place and impractical. And I was a bit of a tomboy too. I always associated myself as a bit of a male. Maybe it was because I was so close to my older brother when I was really little and always wanted to be like him and do whatever he did or maybe it was an Aspie thing as well or both. And at that time I had never heard of issues like transgender or homosexuality or questioning ones' gender so the thought that I associated as a bit of a male, even though it felt natural to me, I did not understand that anyone else on the planet had any understanding of that sort of thing. I was not a lesbian or confused about my gender to the point of not believing that I was a girl but I wanted to be a boy when I was little and I kind of felt very boyish. But I think my parents dismissed that as me just being close to my brother so they just let it run its course and I just kind or grew out of it. But since I did not know that others experienced this I felt like I must not be a real person.

I also could not really communicate with my parents about deep things that I felt. Much of our communication was mostly superficial. I spent a lot of time in my room avoiding my family because I did not feel comfortable with them. So having no explanation for any of these things, I felt like I must not be a real person. I did have a couple of cousins that I was close to though and one summer my parents had three of them come and spend a few weeks with us. That was great. I guess since it was a group of us it made it easier because it was not just me trying to relate to just one of them all the time. It eased the focus to have a few kids there together. But even with my cousins I still felt like I was kind of different. But at least we really enjoyed being together and since we had things in common being cousins that really helped as well.

But sometimes even now when I get into a funk or when someone treats me really badly, I do feel less human. When I was a kid I really thought and believed I was that but now I know that I only feel that sometimes.


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Last edited by skibum on 28 Jul 2014, 6:52 am, edited 1 time in total.

Waterfalls
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28 Jul 2014, 6:51 am

Thanks, SkiBum. I tend to agree this depends on the person, and the people around them.

I felt not human in the other direction, that is when people treat me as not human or having no feelings, at least nothing they can decipher. Making me not real it seems like. So from the outside in, in terms of seeing myself as normal until people don't treat me like a person rather than inside to out like you describe. At first that scared me, wondered do I not fit in even at WR? But trying to take a more positive ouook, that we can be different from one another at WR and people don't always have to get scared, look away.

You are very positive about your approach to others. How do you keep this up?



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28 Jul 2014, 6:59 am

Thank you for sharing about yourself as well. It is so interesting to see two different perspectives that lead to the same feelings. That really is fascinating.

Thank you for your encouragement. I am not really sure where my positive outlook comes from. Other people have commented on it as well. Perhaps it is just a blessing and a gift from God that I truly can't take personal credit for. I am also extremely resilient and sometimes I wonder if that has to do with my insanely strong survival instinct or even my naive little girl side. She has a love of life which even amazes me sometimes. That can be a little fun, analyzing different parts of myself and talking about my little girl side as if she were another person entirely. But I guess she kind of is because the adult personality and the child personality in me are very distinct and different from each other. But I think that she has given me an ability to always look for good and positive and to always believe that no matter what there is something beautiful and wonderful out there to be found. I can only think that God gave me this beautiful little person inside of me who is like that and that is one of the things I am most grateful for about having Asperger's.

It's interesting because even as a little kid it did not bother me to feel less human. I just enjoyed feeling like an animal because I loved animals. I was super close to my cats and gerbils and I loved dogs and horses. I never thought as animals as less than human so I was totally fine with feeling like I was more of an animal than a human. And now that I have opportunities to work with horses, I feel that way sometimes and I love learning how to "be a horse" and learning how to relate and communicate with them like they do to each other. I imagine that is what Temple Grandin was like with the cows.


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28 Jul 2014, 7:56 am

I have sometimes wished that my autistic traits were more pronounced. I think because then people would more easily understand how hard some things are for me to do. I do these things now to "fit in" and to keep from inconveniencing people or make them uncomfortable. Doing this takes a toll on me though. Now that I disclosed my autism Dx on Facebook, I'm gonna try and ease up on the "normal act" to find a balance between letting people see the real me and fitting in just enough to not screw things up too much.

These are just my personal views based on my own experience.


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28 Jul 2014, 11:24 am

I usually avoid eye contact, and people figure out I have some disability from behavior. Seen as "very high functioning"...but am actually lower. Communication is challenging, some anxiety and have been unpredictably aggressive towards my aide in the past, not just self.

My independence support is continuous, longer than available program.


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29 Jul 2014, 5:09 am

As said before it depends on your version of autism and who and what institutions you interact with.

Conversations about who is more Autistic, or is really Autistic has divided the community and hurt it in it's dealings with the neuromainstream world. While because of the quality of people posting this thread has not turned negative, I do not recommend this type of conversation.


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