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Uhura
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20 Jul 2011, 10:04 pm

Hopefully those diagnosed HFA will forgive me but in some ways I almost wish that was my diagnoses. Society sees AS as a mild form of autism and therefore easy to live with. Or at least easier.

And I want to scream that the word 'mild' doesn't make it easy. It takes so much energy to control meltdowns, deal with being touched, etc.

It seems society understand the frustration that comes with more severe problems but acts like people with 'milder' problems or with mostly controlled seizures shouldn't be at all frustrated. I'm not in any way meaning to sound like it is easy for anyone with something severe, just wondering if society understands you more, or tries to, or gives you a break when you can't handle something.

Ok, I've got to go find something positive to read.

Thanks.



littlelily613
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20 Jul 2011, 10:25 pm

That generally is the connotation, but I think that is because so many people really don't know as much as they think they do. Aspergers is itself a spectrum within the spectrum, and "Aspergers" while on the high-functioning end of things, does not necessarily mean "mild". There are Aspies who are very mild, and those who are quite severe as well. It is just a matter of time before people will begin to understand this (hopefully sooner rather than later).


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20 Jul 2011, 10:38 pm

When I first discovered AS I was thinking that I was more towards the mild end of the spectrum. While I am obviously high functioning or else I wouldn't be typing this, I'm beginning to think that my AS is far from mild, and is probably more in the moderate to severe range. The only thing is that my sensory issues are mild and I don't really have meltdowns, but from a socialization perspective, I'm far from mild.


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20 Jul 2011, 10:38 pm

It really depends on your family. What is HFA is mild compared to what I was like as a child but my siblings were still mean to me and thinking my mum needing to stop protecting me from the world. Then when my skills got a bit better people started to be proud of me but then they deteriorated and people think that it's in in my head.
I've never had it easy though. I know parents with kids with AS, HFA or just autistic and they all treat them with the same amount of love and concern. They're autistic angels they call them. Aww.
I know some people that have had kids with MR that have been horrible to them. They'd boss them around and constantly tell them to shut up. It really does depend on who you know.

Personally, I feel the HFA people I know are treated like they should be doing better in areas of life skills and employment and friendship. It's just a matter of different issues to AS. I mean it's not always the case but people with AS struggle to make friends and keep a job and stay in relationships but the HFA struggle with things below that and their parents and siblings just get sick of them and say they're not trying hard enough. We would struggle with the same issues those with AS do once we get to that level.

The treatment is no different. My friends show concern for me, my family tells me to toughen up or yell at me when I do meltdown. So, it's no easier. I was once on a level where my sensory issues were mild compared to know, I could talk to people and had a good knowledge of social skills, and I might have even been able to work. I'd do anything to get those skills back. It's hell being back down on this level. What makes it worse is that no one believes me except those that have experienced it themselves.


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20 Jul 2011, 10:48 pm

SammichEater wrote:
While I am obviously high functioning or else I wouldn't be typing this


There are both moderate-functioning (ie. me) and low-functioning people who are able to type. :)


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Uhura
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20 Jul 2011, 11:42 pm

Thanks.

I was in my 30s and living on my own when diagnosed. It started when I was looking into Medicaid because I have epilepsy. I never was eligible for that but as part of the process they send you to a psychologist, who asked me if I had ever thought about it. It turned out that my epileptologist had alreayd suspected it.

The hardest part of AS changes all the time but right now it is that no one can see how emotionally exhausting it is to appear normal enough to function. The meltdowns are mostly in my head. They don't happen in my head at all and then all of a sudden they return. I have the control to not throw things, but sometimes think of just throwing things. Except I have the control of what I will ruin if I do it.

So I use all my energy to look NT and wish I didn't. Sometimes I just wish I could act as AS as I feel. I wish people would understand that I need time alone.

Thanks again. I need to check one more email and go to bed.



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21 Jul 2011, 12:32 am

I often feel like a waterbird that was forced to become a landbird. I ache for the water, but all I can see around me is dry dessert land.
I feel the extent to which an individual is trying to be normal is a deeper measure of handicap.

To see with such intensity and longing, a world that you can never fully grasp is deeply painful. To be emotionally and intellectually able to see over the wall of autism, but but unable to brake free of the wall, is, emotionally exhausting..........



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21 Jul 2011, 3:15 am

I too think that AS is often trivialised or seen as 'mild'. I don't feel like I have 'mild' autism at all. The only reason I have an AS diagnosis rather than HFA is because I spoke pretty much on time. Other than that I was quite severe as I spent all my time lining things up, spinning the wheels on toys, stimming and watching the same video over and over until it got worn out! I also made tube train noises when I was stressed to calm myself down. I think it is great that SOME people with AS can go off and live independent lives with a partner and possibly even kids, but that's something I will probably never have. I'm not bitter about that though, it's just the way it is.


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21 Jul 2011, 12:09 pm

People often see me as mild as well, because I learned to socialize better now that my diagnosis is known. I must have either gotten into a better enviorment (I know I spelled that wrong), or learned to control my meltdowns, because I haven't had one in a long time.


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21 Jul 2011, 12:17 pm

Jellybean wrote:
I too think that AS is often trivialised or seen as 'mild'. I don't feel like I have 'mild' autism at all. The only reason I have an AS diagnosis rather than HFA is because I spoke pretty much on time. Other than that I was quite severe as I spent all my time lining things up, spinning the wheels on toys, stimming and watching the same video over and over until it got worn out! I also made tube train noises when I was stressed to calm myself down. I think it is great that SOME people with AS can go off and live independent lives with a partner and possibly even kids, but that's something I will probably never have. I'm not bitter about that though, it's just the way it is.


I don't remember lining things up as a kid, but usually I listen to the same song over and over again until it got old. Sometimes when I was younger, I would rent the same movie over and over again (one time it was a movie about a resurrected cat or something).


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21 Jul 2011, 12:28 pm

littlelily613 wrote:
SammichEater wrote:
While I am obviously high functioning or else I wouldn't be typing this


There are both moderate-functioning (ie. me) and low-functioning people who are able to type. :)


What I mean is that I can function just as well as anyone else in my daily life. I've done just fine in school for the past 12 years now without any sort of accommodations made. All of my AS related issues are in the socialization category. Other than that, while my other aspie traits exist, they don't cause any problems, and in many cases, have proven to be rather beneficial.


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littlelily613
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21 Jul 2011, 12:59 pm

SammichEater wrote:
littlelily613 wrote:
SammichEater wrote:
While I am obviously high functioning or else I wouldn't be typing this


There are both moderate-functioning (ie. me) and low-functioning people who are able to type. :)


What I mean is that I can function just as well as anyone else in my daily life. I've done just fine in school for the past 12 years now without any sort of accommodations made. All of my AS related issues are in the socialization category. Other than that, while my other aspie traits exist, they don't cause any problems, and in many cases, have proven to be rather beneficial.


LOL Oops--I think that was another one of those cases where I took the specific words ultra-literally. :oops:


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21 Jul 2011, 1:01 pm

littlelily613 wrote:
LOL Oops--I think that was another one of those cases where I took the specific words ultra-literally. :oops:


Not an unreasonable reaction, given how many here have outright said that anyone who is truly low-functioning couldn't ever possibly communicate at all.



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21 Jul 2011, 2:05 pm

littlelily613 wrote:
LOL Oops--I think that was another one of those cases where I took the specific words ultra-literally. :oops:


Even though I'm not the OP you were quoting - don't worry about it, I do the exact same thing. :P When I was reading this I took it the same way you did!

And yeah, I understand what you mean... Also people tend to know what Autism is, but don't have a clue what AS is. That's why if I'm explaining myself I just say I'm 'Autistic' and leave it at that.