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i_hate_aspergers
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12 May 2012, 11:55 pm

I realize its part of a spectrum but there is obviously different types and varieties. Some autistics are more stimmy and their disorder almost seems to be mostly sensory, others struggle mainly with social difficulties, others have intellectual difficulties on top of this. Yet all forms are seen the same in the public. At least having some categories can be better than none. I mean there are times when its good to tell someone like a teacher about me having AS but id rather not use the word autism. People falsely think of autism as low functioning classic autism. So they would either think im lying , just want to have something, or they would think I had really had problems.

Plus it would be confusing to label all forms of ASDs with the same name.

I personally think that only lower functioning forms of autism should actually be called autism, because autism means "focus on self" and kind of implies a total lack of , or massive deficiency in social behavior and communication. While I think that those capable of joining a site like wrongplanet and reaching out to other people should receive a diagnosis of something like "Social Deficiency syndrome " or something (not yet made up) like that or maybe call all high functioning cases "aspergers". It would be an artificial gap but at least it would agree more with societies definition of autism =" non-communicative/communicates innappropriately" and aspergers = "social skill deficiency ". to avoid some unnecessary confusion

So many years from now, when the DSM IV is so outdated that people dont know what aspergers is anymore , i will have to say im autistic? This will just create conflict or confusion



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13 May 2012, 12:05 am

i_hate_aspergers wrote:
So many years from now, when the DSM IV is so outdated that people dont know what aspergers is anymore , i will have to say im autistic? This will just create conflict or confusion


I think you just fear prejudice by association but in the long run that's just painting yourself in a corner - because you are, in effect, validating the prejudice, by separating yourself out from "those" people to avoid it. Ironically you are, to some small degree, contributing to your own problems this way - because the exact same process can cause people to do something similar to you. If it's a valid thing to do, then that applies to you as well.



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13 May 2012, 12:08 am

I kind of feel the opposite of you, I have aspergers but suffer from more of the stimmy/motor skill side with some of the obsessive qualities and less of the "Oh I play great piano and do math equations in my head!". When people hear I have aspergers they probably assume I'm just some lazy socially awkward nerd who needs to get out more and go out partying to fix his problems. Aspergers seems so broad, you have some who seem to handle themselves well enough while others can't hold a job down and need help with lots of stuff without being LFA.



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13 May 2012, 12:29 am

The one thing that irks experts and other people about autism and autistic people is the fact that we cannot be pigeonholed into neat little categories. For most tests that detect autism, I score somewhere in the severe range. On the ADOS, I scored 14 out of 16. On the online tests I usually score near the top. Even when I do my best Neurotypical act, I can fool most people, yet speech therapists, ABA's, and most O.T.'s can see right through it. I didn't speak until after I was over four years old.

I have superb hearing and can hear sounds that most people do not notice. I have used this ability to diagnose and correct equipment and machine malfunctions. However, I have trouble understanding most conversations and have used lip reading and other techniques to be able to understand what people are saying. I have a very hard time understanding telephone conversations, words spoken over a P.A. system, or conversations over an intercom. I am effectively deaf for many types of spoken communications.

However, I have written books, served in the Navy, graduated college, worked in various fields, drive, and do many, many other things well. I've been diagnosed with Autistic Disorder (ICD 299.00). Although diagnosed early as severely autistic, I believe that I fall somewhere in the middle of the spectrum.

I know of many people who have not as severe of a diagnosis who are unable to drive or do many of the things I am capable of. I also know many others (with less severe diagnosis) that are able to do more things. I know of a completely nonverbal, autistic six year old girl who is able to read at over an eight grade level.

Each one of us is different with different abilities and problems. There is no way the so called experts can make enough categories to fit each one of us into. Autism, Aspergers, PDD-NOS, etc, usually doesn't fit any of us 100%. The one good thing about autism is the possibility that the "experts" will give up on labeling people and start accepting people as they are. YHWH made each one of us different and has given each one of us different abilities and deficits. This include not only autistic people, but also Neurotypical people as well.

I have accepted my label and have worn it publicly - not because I'm "proud" of it, but rather to show people that each person is different. Autism is something that will continue to escape the "box."


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Iloveshoujoai
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13 May 2012, 1:03 am

from a biological standpoint it's simple. You don't start calling a disease/disorder by another name simply because some of the symptoms are less severe. I got the flu one time and I ended up with mostly muscle pain and headaches. Another time I got it I ended up with a lot more stomach pains and vomiting than anything else. We know that the same disorder can look different in different instances. I'm sure this applies to every disorder to some degree.

Autism isn't so exceptionally different from other disorders in that respect, especially considering it is a complex developmental disorder. These differences are to be expected and I'm surprised to hear this mentioned so often in autism communities. The symptoms of aspergers are the same as more severe forms of autism (with maybe one or two minor differences, and of course differences in severity.) The differences between individuals with the disorder are certainly stunning though, and I think having different subtypes of autism like there are for other disorders would make a lot of sense.



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13 May 2012, 1:09 am

I think we are being pigeon-holed deliberately by the government. Reason being is if we aren't "autistic enough" on their difficult disability forms, we aren't on the spectrum at all ;) thus no additional benefits to pay out. Just speaking as someone who has worked in Social Security in the past and gathered a rough understanding of how they operate.



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13 May 2012, 1:19 am

JanuaryMan wrote:
I think we are being pigeon-holed deliberately by the government. Reason being is if we aren't "autistic enough" on their difficult disability forms, we aren't on the spectrum at all ;) thus no additional benefits to pay out. Just speaking as someone who has worked in Social Security in the past and gathered a rough understanding of how they operate.


That seems to be the prevailing theory as to why the change is being made... However, most of the members here have indicated that they feel they would still be classified w/ASD under the new criteria. (I personally would not, but I'm not on disability anyway.) So I'm not sure how much money they would really be saving.

i_hate_aspergers wrote:
So many years from now, when the DSM IV is so outdated that people dont know what aspergers is anymore , i will have to say im autistic? This will just create conflict or confusion


The DSM III is very outdated by now. Yet, people with ADHD-PI still refer to themselves as having "ADD". Many of them are not even aware that ADD no longer exists... It may be a very long time before the term "Asperger's" falls into disuse, if it ever does.



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13 May 2012, 1:25 am

I'd say it would probably bump down the care element of the DLA (Disability Living Allowance) in the UK by one tier.
So for someone going from medium to low, that would save 1,500 a year per person (tens of millions of pounds a year). They would still qualify for additional benefits though so no other savings. However, people previously that would have qualified for low maintenance would have a much harder time getting it and not qualify for anything under DLA at all in likelihood thus saving the government way way more money because it also reduces their increased hand outs they get with other benefits for being disabled (increased working tax credits, housing allowance etc.).

They've already done this with other mental conditions and disorders and it's been very effective. Note the protests last year because of these changes.



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13 May 2012, 1:43 am

JanuaryMan wrote:
I think we are being pigeon-holed deliberately by the government. Reason being is if we aren't "autistic enough" on their difficult disability forms, we aren't on the spectrum at all ;) thus no additional benefits to pay out. Just speaking as someone who has worked in Social Security in the past and gathered a rough understanding of how they operate.


Yes! That is *exactly* what is going on. It's kind of obvious, to me at least.

Imo, Autism and Asperger's are the same thing, but because of the nature of the condition, and the way it was discovered, it ended up with separate names. All other conditions that exist on a spectrum, (I tend to think of auto-immune conditions) are labeled as mild, moderate or severe. Someone with mild Rheumatoid Arthritis may lead a relatively normal life, and someone with a severe case may be barely able to move, but they still have the same name. Autism should be the same way. Some cases are just more severe and disabling than others.



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13 May 2012, 1:49 am

metaldanielle wrote:
All other conditions that exist on a spectrum, (I tend to think of auto-immune conditions) are labeled as mild, moderate or severe. Someone with mild Rheumatoid Arthritis may lead a relatively normal life, and someone with a severe case may be barely able to move, but they still have the same name. Autism should be the same way. Some cases are just more severe and disabling than others.


That will be the case with DSM-5 ASD. Under current proposals, there will be 3 levels of severity:
Level 1: "Requiring Support"
Level 2: "Requiring Substantial Support"
Level 3: "Requiring Very Substantial Support"



JanuaryMan
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13 May 2012, 1:59 am

Interesting. Your disability varies a bit from ours. Basically we have 2 components - care and mobility. They are split into three levels each of severity (which is to do with your day to day life and care needs) and the condition itself is valid or null. So in the UK before where you could have a mild case, typical case or severe case of Asperger's (not full Autism) and continue to fill out the form, if the changes proposed like in US applied here we'd be automatically disqualified because we weren't counted as Autistic thus our care needs would be irrelevant as we do not have a disability according to the form.



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13 May 2012, 2:02 am

scubasteve wrote:
That will be the case with DSM-5 ASD. Under current proposals, there will be 3 levels of severity:
Level 1: "Requiring Support"
Level 2: "Requiring Substantial Support"
Level 3: "Requiring Very Substantial Support"


Would you say talking to someone professional, get some help with social issues and anxiety issues are classed as "support"?



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13 May 2012, 2:12 am

I meant that there are three levels to the diagnosis... I don't know what effect that may have on public services / disability in the U.S. Sorry.



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13 May 2012, 2:13 am

No, it's ok. My bad for misinterpreting what you wrote lol
As far as the diagnosis goes here, we have mild, typical and extreme/severe for ASD.



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13 May 2012, 2:44 am

scubasteve wrote:
metaldanielle wrote:
All other conditions that exist on a spectrum, (I tend to think of auto-immune conditions) are labeled as mild, moderate or severe. Someone with mild Rheumatoid Arthritis may lead a relatively normal life, and someone with a severe case may be barely able to move, but they still have the same name. Autism should be the same way. Some cases are just more severe and disabling than others.


That will be the case with DSM-5 ASD. Under current proposals, there will be 3 levels of severity:
Level 1: "Requiring Support"
Level 2: "Requiring Substantial Support"
Level 3: "Requiring Very Substantial Support"


I don't require any support, I've learned how to deal with my symptoms myself for the most part. I also don't have what the OP called "Social Deficiency Syndrome" either because since my late teens and early twenties I'm completely fine socially, except I will occasionally do or say something strange or inappropriate.

I'm dx'd with AS, I have sensory issues that I handle as best I can or avoid when I can. I have processing and overload issues that I deal with as best I can or avoid when I can. I have my little quirks and things and routines that I strongly prefer, but I've learned to do without them when need be, although not happily. Learning that I have AS and then learning more about it has helped me more than anything else, except back in high school when my friends helped me get over my shyness and learn to talk to people and learn how to act normally.

I also only tell people on a need to know basis, and don't use the word autism except when explaining it, because like most people I think of the lower functioning people when I hear the word. I had never heard of AS when I was dx'd and it took me a while to actually believe that I had some form of autism because I didn't fit any criteria in my mind about it.


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scubasteve
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13 May 2012, 2:54 am

I assume the OP is referring to the fact that AS will no longer exist after this year, having been merged with Autism to form the new ASD diagnosis. (Although he did not state this explicitly and it is possible that I misunderstood him.)

In any case, the concern seemed to be that by lumping the two together, the general public might not understand the difference between the OP's ASD and what we used to call "classic autism", since they are now the same diagnosis. So I just wanted to point out that there will still be 3 levels of severity of ASD, as well as the separate diagnosis of Social Communication Disorder.

What, exactly, "requiring support" is supposed to mean, I have no idea.