Differences between mild Aspergers and severe Autism?

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I suspect that it is on some level socialized. People are raised to expect that humans are supposed to behave a certain way, and that humans who fall outside those behaviors are seen as less human or not human at all. I believe this is socialized because so many of these behaviors are culture-specific.

Also, people can consciously choose to reject these assumptions, to learn how to identify more with people who are marked as other.

I think it's got to do with reading people--like people assume you are really really autistic if they can't read you very well, so they figure there must be nothing there to read.

I kind of suck at reading people... it'll take me ages to realize if somebody's disabled in some way or another unless it's physically obvious (you know, like they're in a chair or something). Like, I worked at Goodwill a couple years ago, and didn't realize until months after that all my co-workers had intellectual/cognitive disabilities of various sorts and were being sent over as part of a work program... I mean, how was I supposed to know? It's not like anybody asked them to do IQ tests in front of me or anything. But I guess maybe that kind of thing is obvious to NTs?

I dont think Ive met anyone with severe autism and if I have, I didnt know that they were. I would guess the differences between mild aspies and severely autistics are huge. Mild aspies are a hell of alot similar to NTs then the severely autistic. Mild aspies can function in normal society, socialize with people, eventually live independently. They just have a lot more difficulties with accomplishing these tasks then NTs do due to various reasons. Mild aspies are able to learn ways to cope with their conditions and live more or less normal lives. While the severely autistics cant communicate at all and will never be able to live on their own and too the population its clearly obvious they have a disorder just by seeing them. While mild aspies, you might never know that we have aspergers unless we tell u. For me, my aspie symptoms arent evident until you get to know me. I think in general its difficult to find information on Aspergers or Autism for adults. Since many people are under the impression that Autism Spectrum Disorders is mostly a childhood disorder.

"Can't communicate at all" are pretty strong words.

So are "never be able to live on their own."

I don't want to parse those statements or ask you to clarify them: But you are wrong on both counts. Perhaps you can make a snap judgment about someone on the basis of what you see but it seems to me that what people see likely does not reflect the full reality of any particular person's situation.

I can generally spot lots of different sorts of neuro-atypical people (including many who are supposedly passing). But I don't spot a lot of the artificial categories put onto us. Generally what I'll notice if anything are certain commonalities among people, but they'll be actual commonalities, not necessarily consistent with a made-up label.

What I don't always get is why it's so often the actual people with these categories put onto them that will swear they are real.

Like the post above me about how people who can "live on their own" (codewords for "are totally dependent on society but if we don't say anything nobody will notice") are totally different from people who "will never live on their own" (codewords for "need a tiny bit more help than we do but we will pretend it's a lot more so we won't be obligated to give it").

No I don't buy it one bit. Nor do I buy that it's so very easy to tell who is who.

My usual example: me and a really good friend of mine. In every way that matters we are so close to identical that it's eerie to people who know both of us. People who don't know us on the other hand? They say we are light years apart because I'm supposedly severe and she's supposedly mild. She also supposedly lives on her own while I don't. While actually she gets nearly the same help from her boyfriend that I get from the state. I can tell you she is not closer to an NT than she is to me. But a few very minor differences in the scheme of things are all people see of us.

I also notice people put a huge big deal on the ability to use words to communicate. Or the ability to appear as if you do even though you can't communicate a single word of your own thoughts. (See how it's about appearances? I bet nobody here who believes in the difference would call a person severely autistic if they couldn't communicate in words but could look just as if they did.)

They also don't care how many other ways there are to communicate. Or that perhaps non-word communication is more important to people like me and my friend than words. Or that one of our big similarities has nothing to do with when or whether either of us uses words to communicate and everything to do with whether we can use this one other form of communication. And that anyone who does that is more similar to any of us than people who use or fail to use words or speech the same way we do.

Why on earth don't people notice these things and why do they keep repeating this stuff about how all classifications of us that professionals come up with no matter how ridiculous must be valid because someone said it was and people believed them and all the circularity is tying my brain in knots.

*sigh* it really bugs me when people try to draw a hard LINE between "high functioning" and "low functioning" because there really isn't one... it's especially hard to tell when you're comparing people who were diagnosed at different stages of life, received different amounts of therapy/assistance, and pretty much are DIFFERENT PEOPLE.

like, i would be classified as fairly high functioning, but you also have to consider that i taught myself to function as well as i do now. i don't have to photograph halloween pumpkins before i carve them anymore, or record absolutely everything with a tape player, or keep the sensations in my body symmetrical (if i hit one hand on something, i have to hit the other one too, etc) but i used to do all of those things... so really, what do labels indicate? how affected we are or how far we've come?

I think so, and once a thought/reaction like that is recognized for what it is, it's doesn't seem very hard to dismiss it (and get into the habit of dismissing it).

I have noticed that I seem to be slower than normal at picking up on that (I usually end up figuring it out later, when reviewing the day/week/year in my mind). Sometimes, I've had people act weirdly toward me because I was talking to someone who might've been cognitively impaired or speaking in word salad or something (I have to listen so hard to understand people that there's no way I'm going to figure that out too quickly). In those moments it is strange, wondering what people are seeing and acting strange about, as if they were hallucinating.

It sort of is a hallucination when our minds trick us into perceiving something that isn't there.

Then by your description, I am not mildly autistic. So far everyone that I have told about being on the spectrum as basically reacted with, "well, I knew there was something different". Almost a friendly "Well DUH! Of course you are". It would seem that I am more than just weird, but in some ways obviously not put together the same as most people.

And yet I manage to get by in life. I have never thrived or met with great success in anything. But I am living 'unassisted'. So by any outward signs, I am high functioning. In the scheme of getting services from autistic organizations and social agencies, I AM high functioning. But it is obvious that I am not normal.

Last edited by wavefreak58 on 12 Jan 2011, 11:26 pm, edited 1 time in total.

I am trying to work out what high functioning is supposed to be. I know that low functioning is virtually a rhetorical device, "cannot communicate or live independently" which is a state that exists by enforcement and not something that is actually true.

I realize both of these terms are ultimately meaningless, but I have trouble interpreting what people mean by them. Is it simply "can speak verbally and can live independently?" Is everything else extrapolated from these two things? Is it just verbal communication?

And as Anbuend points out, "living independently" is an illusion itself. Everyone has support.

This'll be long because I've been looking into it since a little over ten years ago when I started coming to terms with being autistic instead of any of the other labels I was given. And it can mean different things in different contexts. 

It sometimes means solely IQ. That's another sense in which I break the definitions of course. See, the IQ cutoff varies. By some definitions my most recent IQ (well who knows what it will be if they ever test me again) puts me into low functioning. By others it puts me into sort of a mid-functioning range. By others it's unambiguously high functioning. Go figure. By the way, under all IQ-based definitions of functioning level there are low functioning people who can communicate in fluent language, pass for NT, and live "independently", and high functioning people who can do none of those things.  

The IQ definition ticks me off for several additional reasons. One is that I don't like IQ categories whatsoever. Another is that even if I agreed they were real... isn't the developmental disability where functioning is supposedly defined by IQ, intellectual disability (ID) rather than autism?  Like if autistic people's "severity" could just be defined by IQ then wouldn't autism be ID?  Not that I like that sort of classification much either of course. But if you do believe in all the standard categories of DD then defining autism's severity by IQ makes as much sense as defining CP's severity by IQ instead of like... amount of physical impairment. (That doesn't stop them from assigning super-low IQs to people with CP who can't move well enough to take the test, much like autism really. Which is why at the ultra-low end of the IQ range just about everyone actually has severe physical impairments.  But this is a tangent.)

Sometimes it's a test of actual skills that has scores that assess practical applications of abilities. The scores often work like IQ except it's not IQ. This includes things like the Vineland and the ABAS. (My ABAS score five years ago when I was much better at many things, it nearly bottomed out the test (somewhere around 40) and specific subtests did bottom out, so that would be unambiguously low.  It assesses practical application of skills in everyday life, not theoretical knowledge.  So like, the communication section emphasized things like greeting skills or using communication for immediate practical aims, which I'm terrible at unless something triggers it all. I got the lowest score possible on that section because they were not looking for the kind of communication I'm good at.)

So other definitions hinge on any (or any combination) of several practical skills:

Various communication skills cut off at different points:

* Speech
* Speech/typing
* All forms of physically independent expressive language
* All forms of expressive language
* All forms of readily understandable communication including picture symbols and the like
* Receptive language

Everything else:

* Self-care skills
* Other daily living skills
* Ability to pass for NT {1} 
* Where you live {2}
* Where you go to school {3}
* Whether you acknowledge people in typical ways or not {4}
* Whether you show awareness of your environment in typical ways or not {5}
* Whether you socialize or not. 
* Amount of stimming
* Moving when no movement would be expected in a nondisabled person 
* Failing to move when movement would be expected in a nondisabled person
* Fitting or appearing to fit Kanner's original criteria {6}
* Toilet training 
* Presence of "regression"
* Safety skills like crossing the street
* Self-injury
* Violence towards others
* Degree of sensory issues
* Number and king of so-called "comorbid" conditions
* Presence of squealing and other unusual vocalizations
* Lots of other things

I've noted for a long while that which traits a person chooses to define the line between HFA and LFA says more about that person and perhaps their society than it does about those they label HFA and LFA. 

When people label themselves high or low functioning there's often but not always some weird motivations for it. Don't get me wrong, lots of people just do it because they've heard of it. But many people call themselves high functioning to distance themselves from those they see as LFA, as if they're better than those other people. Many people call themselves LFA to prove their opinions on autism more valid, to make it sound like you'd have to be less autistic to disagree with them, etc. There's always what I call higher functioning than thou or lower functioning than thou too, either of which is a game that can be played by people who consider themselves either one, not just the one in the name. (Like someone who calls themselves HFA can still act like they're soooooooo much lower functioning than those other "HFAs".)

So it can mean whatever someone wants it to mean.  The thing is, autism affects dozens if not hundreds of individual skills. You can't, just can't, line us up from mild to severe and have it make sense. We aren't a line, we are a multidimensional landscape. Also, it's awful to point to someone and claim to know what skills are inside them. You can't watch a video of someone and decide they have no communication skills whatsoever (no matter what anyone says about them either), or no understanding of anything. Those are skills that even the person who knows them best can't possibly know they don't have them. No communication is also impossible. Everyone communicates even if they don't intend to. 

And there are all kinds of understanding. When I use words I am translating from another kind of understanding, based in the senses rather than ideas. Many people labeled uncomprehending are experts at this. Many are experts at things that most people don't even know could exist. It's arrogant to claim that the skills most nondisabled people are aware of are the only ones that are possible. Or that if a person is lacking in many conventional skills then there's no way they could be better than the rest of us at less conventional skills. 

Or even conventional ones:  I was able to speak superficially okayish but grew up with a severe impairment in receptive language. I know a boy whose IQ tested around 30 or under, who grew up nonspeaking (except in such distorted ways that most people think he is just wailing), but he had always understood words and when he learned to type (independently) he immediately was using words his mother doesn't know. Which is impressive given his mother does linguistics-related stuff for a living. His vocabulary was higher than my current adult vocabulary when he was seven. He is everything in terms of academic skills that everyone mistakenly thought I was, except he is for real. He's been in college since early adolescence and thriving there. And his appearance and outward skills are such that if some of the people on this thread saw a video of him they'd be saying he is a perfect example of severe autism and lack of communication and having no understanding of the world. I bet academically he outperforms everyone on this thread. And I once saw a little girl walk up to him and in a slow patient voice try to get him to say the word "bubble" as if he was a toddler. 

If he had a different set of parents he would probably be in special classes destined for a group home at best and declared a low functioning person with no communication skills or understanding of the outside world. Not that his skills are what ought to buy him respect, just that he shows clearly why all the stereotypes are wrong. 

But as each of us who is often described as severe or low functioning come forth as examples, people don't listen. They just say we are exceptions. Or they look through our lives to find an "aha see that explains everything" bit of information (or misinformation sometimes). Anything but acknowledge that any random "LFA" person might be just as aware (or whatever else we are) as we are (and that in the past, or in an alternate version of our lives, we would be counted as just another LFA). 

Another thing I find interesting is what happened when I was being bounced around to several different segregated settings (mental institutions, residential facilities, mental wards, special ed). The only functioning label I got on paper was low. But the papers were written by doctors. The more "lowly" staff determined functioning labels you were informally given.  

What happened to me was that I would be bounced from mild to severe and back again. Not based on behavior, nor the "severity" of other clients. Just on weird unwritten rules in each place. Each place would have its own severity level for me. None of them were any good by the way. 

The other weird thing was that if I jumped from one severity to another, nobody would believe stories from the last place. If the current place considered me mild they wouldn't believe stories of constant drooling, always being in restraints, etc. If the current place considered me severe they would not believe stories of communication or socialization. 

It's not as if I behaved differently in each place either, so it can't be that. I remember places considering me social despite my lack of interaction with anyone. I remember other places considering me unaware of people despite my clear obedience to certain directions and stuff. It was surreal and didn't help my state of mind any. 

{1} Note that this skill itself is relative to the mental activities and viewpoints of the observer.  See this post dealing with the specifics in my life growing up, short version is I was very weird looking yet passed because others actively found made-up reasons for every piece of odd behavior and then remembered the reasons rather than the behavior.  IOW more of the cognitive hallucinating. I call this being passed off, rather than passing. 

{2} As in, whether you live at home, in a group home, ICF/MR, small classic institution, large classic institution, etc.   Note that having or lacking any ability does not define where a person lives in real life. So people who say a person is HFA if living at home, MFA if living in a group home, and LFA if living in any other kind of institution, don't know what they're talking about. I could be in any of these places depending on what time and place I lived in and what my parents were willing and able to do for me. I qualify for admission to an ICF/MR or nursing home. But I get that same level of services in my own home because my state has a program to let the Medicaid money follow the person. 

{3} See {2}. I know an autistic woman who was mainstreamed despite not understanding a word of what the teacher said and running all over the classroom obliviously dancing, climbing, and singing to herself. The teacher had called her mother in for a conference and told her all this and that she was concerned about her. The mother then said something like "If you ever call me in over anything this stupid again I'll knock your block off." And mainstreaming was achieved despite her being functionally nonverbal with no receptive language to speak of and extremely hyperactive.  Meanwhile there are autistic people put into special school who could handle mainstream school. Heck there are nondisabled people put into special school for being black. The world is not simplistic. 

{4} My favorite example of misunderstanding about this was when a reporter showed up in my apartment with a camera. I was so petrified I turned around, walked to the window, and stared out it. She wrote this up as my acting as if she wasn't there. No, if she wasn't there, I wouldn't be running away from her and looking everywhere but her. I see this kind of misunderstanding all the time not only with autistic people but also people with dementia and several other things too. 

{5} See {4}. 

{6} Profound lack of affective contact with other people; an anxiously obsessive desire for the preservation of sameness in the child's routines and environment; a fascination for objects, which are handled with skill in fine motor movements; mutism or a kind of language that does not seem intended for inter-personal communication; good cognitive potential shown in feats of memory or skills on performance tests, especially the Séguin form board; onset from birth or before 30 months.  Later these criteria were revised to: a profound lack of affective contact; repetitive, ritualistic behaviour, which must be of an elaborate kind.

What I mean by appearing to fit is that most autistic people who supposedly fit those do not actually universally (or at all) have a profound lack of affective contact. Virtually all autistic people show attachment to parents for instance. The difference is that most people only see affective contact as present in certain behavior and if you lack that behavior you lack that affective contact as far as they're concerned. Meanwhile there are autistic people who successfully fake affective contact and are excluded from Kanner's criteria despite meeting them. 

I'm someone who has some amount of affective contact but most people who don't know me would say at this point in my life I fit Kanner's criteria. (Personally I consider that meeting his criteria because from the beginning he was relying on appearances like mine and deciding for us that we lacked affection for anyone.) Meanwhile I had very little affection for people in much of my childhood but sometimes looked like I did because I would put on an act.  Go figure. 

=======

I'd like to end with a quote from a great article called Defining Autistic Lives. I strongly recommend reading the whole thing:

http://www.raggededgemagazine.com/revie ... n0605.html

Here's the quote (all italics removed because it's too hard to go through and add them):

I think people are really picking this apart. If you live on your own and have a late diagnosis you are high functioning.
If I'm to see this from an NT's point of view (channel my sister) who knows very little about autism and only found out a year ago that it can be high functioning. Severe autism is obvious. You can tell who has it because the symptoms are so severe.

I'm not saying that you don't have issues and don't need any assistance. I do. I still live with my mum and have never had a paying job that lasted longer than two days. But really, it's obvious. Someone that needs to be cared for by their family, for most of their needs is low functioning. They are usually diagnosed before they start school.
I mean sure some HFA people can have a few symptoms where they can appear to be LF. Most times I'm out in the public I become like that, but I'm high functioning.

Please consider the possibility that it seems "obvious" only because the people who are putting functioning labels on others are making assumptions and stereotyping people based on superficial appearance.

What you're quoting--the "obvious" characteristics of HFA/LFA--are stereotypes. They don't play out in real life like that. In real life, it's a LOT more complicated.

Yes. That.

Have you noticed the amount of people on this thread and others like it who just keep saying "It's obvious"?

It's really disconcerting. Especially since that's exactly what people always say about me. "Autism that profound is a tragedy." "I never want my child to grow up to look like that woman." "I worked in institutions with people who look like her and they have no quality of life." "I can tell just looking at her that there is a richness to life that she will never know." "My brother teaches students like that and there's no way she could have written that."

"What is that thing on her lap?"
("I type into it and then it speaks.")
"Oh yeah? Well then can she tell me what we just saw then?"
(silent fury)
"Heh, guess not!"

"I don't know what to do with her. This chart says she's 27. But she's got the cognitive functioning of an infant."

"Looking at you... I don't know... you look like my son. But you can think. But you look just like my son. I never thought what he might be aware of until now. But if I saw you on the street I'd never have known..." "I was so surprised you can think when you can't talk. Do you think my daughter thinks?"

Direct quotes and paraphrases from people to or about me. Not a passing problem but an everyday phenomenon. I care about this stuff because I live the consequences of "But it's obvious" every day. It is really and truly "just obvious" to many people that there's nobody inside of me. And to me it's never just obvious. The only obvious thing to me in all this is that "It's just obvious who is who" is a story people tell each other and themselves. Unfortunately that story becomes anything from a nuisance to life and death for the people overlooked in all this obviousness.

They are functioning labels for a reason. Because those people require a type of support because of their symptoms.

I think you're looking into this too much. And I don't care. I'm leaving this discussion.

And I never said it was a tragedy but I can see why there are functioning labels in the first place.

Labels are what people do. The usefulness and accuracy of the labels is the question here. It seems evident that HFA/LFA is useful in a limited way. It just doesn't have the subtlety to describe the range of issues present in autism.



Your opinion matters as much as any other here, even if there is disagreement.

Last edited by wavefreak58 on 13 Jan 2011, 10:13 am, edited 1 time in total.