Just curious...Question for lower-functioning AS individuals

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If this has already been asked, feel free to just direct me to another thread...I haven't been on here that long.

I have Asperger's, I just found out this year, and I have been researching the aspects of autism that effect me to better understand myself mostly, but I am curious now about what it's like to be lower-functioning. Do you wish you could be "cured"? Or do you like some aspects of it, like I do about my Asperger's? How do you feel about the treatments and therapies they have for LF kids? How do you feel about the way lower-functioning people are portrayed by all of the "awareness" media out there?

I participate in some online debate groups and when autism comes up, I can really only speak for myself. I try to explain that everything about it is not a horrible tragedy, but, they always come at me with "well, you don't have SEVERE autism, so you don't know what you're talking about...it's a completely different thing, it IS a horrible tragedy!"

And, of course, in the vaccine debate, they like to think Asperger's is separate from LF-autism in that it MUST be caused by vaccines or other outside sources. I showed them an article showing that they are starting to find out autism cases really aren't increasing much, they were just undiagnosed before. They don't believe it. What do you think of the vaccine debate?

I don't really like functioning labels. I think there's more diversity to humans than that. I have a son that's considered by most to be LF, but I seem to be able to relate to him. I have a son that's considered HF, and I will admit that I relate to his idiosyncrasies more than my other son, again, I still see more similarities than differences. It just seems arbitrary. HF at what? LF at what? I tell people that say things like that that my son is a person, not a big ball of deficits with a few splinter skills. I remind them that it's demeaning to a person to call them LF. What if we classified NTs as HF, or LF?

My son is not a tragedy, and I hope that he never hears anyone say that he is. I have had to remind people that he is autistic, not deaf. Someday, I have no doubt, that he'll learn to read, and I do fear that he'll read some of these negative interpretations of what people think him to be. I have read many stories where suddenly a nonverbal autistic (usually an adolescent) learns to type, and everyone is amazed. They tell everyone that they have been aware of everything going on around them, but unable to communicate it. Just because my son experiences life differently, and communicates differently doesn't mean that he's any less happy.

I think the people you're referring to in your post are what can make my son unhappy. Acceptance can make a world of difference.

1. Without doubt, being a full autistic or low-functioning is a real burden to bear, and I don't envy those who struggle to overcome it. However, as much as being high-functioning is a blessing, it isn't exempt of its pain and struggle, and I resent those who cheapen the experience by saying that because I'm not as bad off as someone more severely affected that my struggles aren't just as legitimate.

2. Until we know exactly how autism happens and all of its causes, there will be a lot to debate. Without question, we should not expose children and infants to things that could cause neurological problems. Heck, we should remove such products from the general marketplace (artificial sweeteners carry a host of metabolic and neurological complications from long-term use).

I agree with you on the functioning labels...I'm just not really sure how else to word it

I've attempted to explain this to people, and mostly what I get back is they treat it like I'm insulting their religious beliefs and I have no right to try to get them to see the other side of the story. It was strange to me that there were no people with Asperger's or anything in the austism groups on that site trying to reason with these people, but I guess I understand. It's insanely frustrating to read their posts and it's easier to just ignore it! I wrote a journal on there once about the good things about Asperger's and a couple of the parents of autistic kids on there reminded me to not "cheapen our struggles"...pretty much implying that there is nothing good about more severe autism...and some even told me that Asperger's and autism are two completely different things and I can't know what autistic kids go though! I went in there thinking that when they make posts asking why their kids do certain things, that they'd appreciate hearing why I did those things when I was a kid...but they don't. They only want to hear from the other parents. I guess the only reason I still look at the posts is because I feel sorry for some of the kids. The parents have such low expectations for them and I hope they keep it to themselves when their kids are around. Geez, one lady was asking how to break it to her son that he may never drive...and she said he has "very high functioning Asperger's" (whatever that is). I told her she better not tell her son he won't be able to drive!! She kinda got mad at me for pointing out that I can drive fine and so can many other people with Asperger's. I really don't get the mindset of these parents...

I think that's the biggest problem with being "higher functioning". Sure, you don't have the struggles that more autistic people do, but you have more judgment from other people because you seem normal so they expect you to act normal. People think you're using it as an excuse (my uncle currently refuses to have anything to do with me because my Grandma told him about finding out I have Asperger's. He thinks it's just my newest excuse to be "lazy".) If you grow up with a parent who tells everyone that you are autistic, then I'd assume people are more understanding...however I got to grow up wondering why in the world 95% of the people at school hated me even though I tried so hard to be a nice person and why my whole family thinks I'm such a terrible failure even though I got straight A's!. Besides that part, I like most of the Asperger's traits I have.

Besides that, when I read about more autistic people, I CAN see how my symptoms could cause more problems if they were just a little bit more pronounced. I do understand it to a point. I know I can't totally understand it, and I'm not going to claim that I can, but it pisses me off when they treat me like I have absolutely no clue what autism is.

Honestly, I can't tolerate those sorts of forums anymore. Even before I thought that I might be on the spectrum (when my kids were first diagnosed) I still didn't mesh with all of those parents. I still put up with a few autism moms on facebook that I vehemently disagree with how they treat their child, but that's about it. We pretty much agree to disagree, and not force our views onto each other. They have their mind set to what they think autism is, and that is that. All I do is get myself all upset when going to autism parenting boards. All that you can really do is blog about it, and try to find other ways of spreading info. Reach out to the open minded parents that will listen. There are some out there.

I will say, however, that some of the parents are just wanting validation for their struggles. I'm not gonna lie, and say that it's easy. It's incredibly stressful, and I know it's even more so for people that don't have the patience to deal with special needs kids. My kids don't hinder my social life, because I wouldn't have one even without them. The same with going out, and doing a lot of fun things. It doesn't bother me that I can't do that, but it does a lot of NT parents of severely autistic kids. I don't care what the neighbors think of me, but again, (most) NTs do. I don't think it's their fault they're that way. They're doing what they're wired to do. Though, I think some of their selfishness goes over the top at times.

I do find it strange that they got upset at you for saying their kid may be able to drive. The boards that I've been on were completely the opposite. They get upset at anyone that even so much as suggests that their kid just might grow up to be anything less than indistinguishable from their peers, despite all the therapies that the parents have them in.

i agree totally!! ! great post, when i was growing up i watched my family yell back and forth about me, heard my father when he was at his worst call me bad things, and watch them throw a newspaper where apartment ads were at me to get out, did they think i knew? not really, i mean all i really did was babble and stim, no they were angry and didnt realize their actions(which i dont hold them responsible either), but unfortunely i did know. I was very aware still am very aware of what is going on around me, jus because on the outside appearance all im doing is stimming make "low functioning" noises as ppl would call it, and not really verbal, i dont hav feelings or thoughts? pleasse, yes i do, i do have a voice although it may not seem it but i do. I think thats the biggest thing ppl do is talk about autism as a disease or a tragedy or how its stole their soul, im sorry but if i heard that as a kid i would remember especially if i figured out i was autistic, like what a jab in the heart that is. So i totally agree with ya serenuty. Acceptance can make a world of difference. I also agree on functioning levels are sometimes stupid, ppl describe me as mid-low functioning, so what i stim and dont speak most of the time, so what i dont interact and appear as a 3 year olds behavior, inside i have real thoughts, and on here can type it all out, i experience everything the same way, and there are sides of me that are high functioning, but not everybody sees them. to call me mid-low functionin is an understatment, cuz there are times i can have a conversation, and seem to interact. Basicallyu there are high fucntioning and low functioning sides to every person i think in my eyes, from my point of a view, ive met kids well im around kids with profound autism, ones who cant do much but bite themselves, not even hold a crayon, hold a ball right, etc, whom sometimes give better eye contact then me, who are sometimes more gentle then me, who sometimes will allow more then me, but if you put a functioning label on what u see yes thats profound autism, but how do u really know if their profoundly affected inside too? how u not know there like a mini einstien inside, no u dont, unless like serenity said u meet kids who find a voice threw typing and amazing like holy crap there is soembody inside, yes of course there is always somebody inside. anyways jus my 2 cents hope i didnt hurt anybody or bash anybody.

I've had very similar experiences on these boards... I never know what to think about it, and have a hard time being shrugged off at times on them.

Once there was a guy talking about trying to take his son to a completely new place because they had moved, and was talking about how the son refused to go and was making up "nonsense" excuses like "I don't want to go because our cats are fuzzy."

I found it kind of humorous, because other parents even were telling him that these reasons are not always nonsense and may tie into the real reason in one way or another. They were all addressed, but he still kept calling it all nonsense... but when I piped up to offer suggestions on how it could tie together, what it could possibly mean, and brought up the fact that he may be making his son feel forced into offering a reason to begin with, it kind of went... silent for a few days, and then the conversation started up once again with me ignored, lol.

I find quite a bit on those forums, that those of us with ASDs will go ignored or will get yelled at at times... maybe because they are looking for reasons for things that are logical to THEM rather than to us, it's hard for them to believe our suggestions for why one may do something?

I think the only times I was ever addressed nicely was once by another parent who suspected she may have an ASD as well, and another time when I was explaining to these parents who thought their children were incapable of love and showing it and all, that if I'm willing to stay in a room with my parent for a long period of time, it isn't because I'm being forced to be there... I'm choosing to be there because I am comfortable, feel safe, love them, etc.

I haven't figured out why I keep going there... or why I keep trying to offer insight. I suppose I feel that if I had an idea of a reason my child would do something, I would feel better about it... or if I saw someone with the same disorder accomplishing things, I would maybe feel better about things... but it's just so hard to put myself in their shoes and actually understand what they are there for, that I think I probably open my mouth a lot more than I should at times.

I don't think about it a great deal actually. My experience has been that anyone can just about learn to fake it enough to get degrees and a steady job. I've adjusted enough that I wouldn't know what to do if I woke up cured and NT.

Lots of LF people don't want a cure either. In fact, non-verbal autistics are some of the more vocal advocates, partly because people can't deny they've got autism (it's easier to pretend somebody can't legitimately say anything about autism if they can speak without a VOCA.)

And yes. Functioning labels really don't mean a thing. I've heard "high-functioning" said to mean anything from "can use the PECS pretty well" to "is a respected scientist at a major university". And I've heard "low-functioning" defined as everything from "must have assistance at all times for basic survival" to "still needs help at school".

So I am anything from low-functioning to high-functioning, because the functioning labels don't mean anything.

You want to talk functioning level at all, you've got to have a solid scale and say exactly which one you're using, because it doesn't mean much when you just say high, moderate, low.

If you want to talk about how well I do in daily life, try GAF. I had a GAF of 53 at my last assessment, which is basically in the moderate range.

Support level is a way of talking about functioning by the level of assistance a person needs. In terms of support level, I'm Intermittent Support, occasionally Limited Support. That means I need things that are mostly minor, like having somebody available to handle a crisis if I have one at school, having access to a crisis line at home, weekly organization/living-skills lessons from a counselor, job training, people to teach me to drive and help me hunt for a car, etc. It's a matter of people being "on call" or by appointment, not actually always there.

You can also talk about "Functional IQ". That puts you on a bell curve of developmental milestones with people your age. It's more often used with children. Because I cope about as well as a teenager might be expected to deal with life, mine hovers around sixty.

There's one important thing about functioning levels that you have to remember if you talk about them, though. You can put a "functioning label" on a person IF the scale is well-defined enough, by looking at that person and their traits.
But you cannot tell what a person's traits are by looking at their functioning level.
It's like, if you look at schoolchildren who both have a grade-point average of 2.0 on a four-point scale; you can look at a child's grades and calculate his GPA, but you can't look at his GPA and tell what his grades in specific subjects are. When you calculate the GPA, you lose information.
Same goes with functioning levels: When you calculate a functioning level for anybody, even if you use a consistent scale that actually makes some kind of sense, you can't predict their specific skills from their functioning level, any more than you could say, given an average of two points, "That kid must have had 3 points in science and one point in geography."

Edit--Also, I realized I didn't actually answer your question. Heh.

Basically, yeah, I'm disabled, and yeah, it can get difficult. I don't need as much help as some (see above; and obviously I live on my own, which is always a good sign, however narrowly you're holding onto it); but it's not like AS is just a little social awkwardness in exchange for being a genius or something. There's real disability here. Thing is, there are more important things than not being disabled. Being myself is one of them. That's the problem with the cure mentality; people assume that the life of a disabled person must automatically be worse than that of a non-disabled person, as though you could rank human happiness based on skill levels.

Yeah, I have problems. So does everybody. NTs go through messy divorces and go broke and get hooked on drugs; I have meltdowns and transition issues and executive dysfunction. So how's that different? We all have problems. I think a lot of NTs assume that because they would hate to lose the skills I don't have, I must be suffering like they would if they lost those skills. But I never had 'em, I'm working around it, and I don't really miss them any more than a guy who's born deaf misses hearing. They think that it must be horrible not to have a normal life. But for me, autism is normal.

The so-called "awareness" campaigns do LF kids and their parents just as much of a disservice as they do to anybody else on the spectrum. For that matter, pigeonholing them as "LF" doesn't help them much, either. When you try to turn an autistic person into some kind of tragedy, you're distancing yourself, isolating them, and assuming that they cannot have a good life if they aren't cured. But that's nonsense; they can have good lives just like I can. If my life isn't any worse than an NT's, then by extension, I'm going to guess somebody who's more disabled might not think their lives worse than mine. The one thing that makes me really mad, though, is that people get told over and over that they ARE worth less than high-functioning or non-disabled people; that they won't be happy until they can be cured; that all their problems stem from their disability; that they've got to "overcome" it; that they've got to reject what is essentially a part of themselves because it's unacceptable to have it. That hurts people.

Vaccines don't cause autism. And it isn't even really a debate anymore--more like a bunch of quacks and fearmongers yelling loudly, and a bunch of exasperated scientists reaching for the earplugs so they can investigate the causes of autism properly. We've shown it over and over: Vaccines don't cause autism. Vaccines cause very little of anything, and certainly much less than the diseases they prevent. Autism is mostly genetic, with some environmental influence, most likely prenatal; and it is neurological in nature, since the structure of autistic brains is different from the structure of typical brains.

Last edited by Callista on 25 Oct 2009, 11:08 pm, edited 1 time in total.

I'm betting most "lower-functioning" people don't really care enough to answer your questions, rather, they'd prefer to follow their interest (meaning, unless advocacy is their interest, you won't be hearing from them).

Yeah, but if advocacy is their interest, it's kinda hard to shut them up.

^see above long-winded lecture.^

(Really, though, there are lots of reasons why you might be called low-functioning, and only a few of them would make you uninterested in participating in a discussion on advocacy.)

I've seen this on that site as well. I'm often told I don't understand, but I believe they do not understand. I know I was one who was late to drive, but I CAN drive. I have tried to reason with moms like that, but have not succeeded.

Totally.

I was not diagnosed with AS specifically, but I do consider myself a "low-functioning NLD-er" irrespective of what anyone thinks about functioning labels. From my perspective, the ONLY thing which would define me as "high-functioning" is my IQ scores. To make this easy on myself, i'm including a case illustration from Dr. Byron Rourke's book, "Nonverbal Learning Disabilities, the syndrome and the model". The struggles faced by the women in the illustration are remarkably similar to my own:


"Upon completion of secondary school, a woman who I call H.S. initially worked as a salesperson in several department stores. Invariably, she was let go in each instance because, among other things, she made errors when using the cash register. Subsequently, she attempted a job as a keypunch operator but was dismissed from this position as well because she was slow in carrying out her responsibilities and prone to making many mistakes. Following this, she attempted several waitressing jobs. As would be expected, she found that she could not cope with the demands of such work, because she often got orders mixed up and her motor coordination problems made it difficult for her to carry trays, particularly during busy times when speed was demanded.

Discouraged, depressed, and by now criticized by her high-achieving upper-class relatives, H.S. sought help from a psychologist. On the basis of a vocational assessement the psychologist advised her that her interests were clearly in the "helping" professions. Following the advice of the psychologist, she subsequently managed to gain acceptance into a social work program at a university. Despite extreme difficulty, particularly in the third and fourth years when the academic and pratical (field placement) demands became quite complex, she managed to complete the program. This was accomplished, however, only with considerable help from others in organizing term papers, in writing reports and in other aspects of the academic program. She also received much in the way of general support from a sympathetic guidance counselor. During this 4-year period, H.S. experienced bouts of severe anxiety and depression; however, it was not until after graduation and subsequent futile job searches that her suicide attempts began. Over a period of 2 years, she "overdosed" three times and was admitted to a psychiatric unit on each occasion. Misunderstood by her relatives, who continued to demand that she should be working "like everyone else"; out of touch with her former school friends because they were all either busy working or raising children; rejected by potential employers; and incapable of comprehending the nature and implications of her deficits, she finally (and very reluctantly) assented to receiving a disability pension. With considerable supportive counseling, she has not attempted suicide for several years, but she is chronically depressed and frequently talks about being "no good" and of "no use to anyone".

H.S. continues to believe that she could function as a social worker if she could only obtain such a position. In all likelyhood, she could never do so. While she possesses a rudimentary knowledge of the field, she lacks the cognitive capacity to evaluate complex situations adequately, the cognitive/affective flexibility to deal with the changing needs of individual clients, and the emotional strengths to survive the stresses inherent even in a light caseload. She is highly vunerable to stress and, as an apparent result of this, has developed multiple physical symptoms over the years. As well, she endured a period of approximately 6 months during which she was clearly paranoid, with delusions mainly of persecution. She is currently functioning reasonably well, but it is clear that even the prospect of maintaining a small apartment, preparing meals for herself, and coping with the other requirements of daily living represent a considerable challenge for her.

Interestingly, H.S. has, on several occasions, expressed a desire to apply to graduate school to obtain an M.A. in social work, convinced that this would be the "ticket" to her success, Thus, her unrealistic self-evaluation is perpetuated in the belief that another degree will solve the problem. In fact, in the unlikely event that she could even complete a graduate program, the stage would be set for new and even more devastating setbacks".



There are certainly many differences between myself and "H.S.", but the similiarities are striking enough. She actually managed to complete a BA in social work whereas it took me 8 years to obtain an AA in liberal arts WITH course substitions for mathematics. I have never attempted suicide or even seriously contemplated it. I'm not saying that makes me the *better* person in any way, i'm merely pointing out the distinctions between myself and H.S. In fact...I believe H.S. had EVERY rational reason to attempt suicide and I believe I do as well. I just happen to have an intact self-preservation instinct which seems intractable no matter how horrific my life is. There are other minor differences which are not worth mentioning, but fundamentally speaking, my own experiences are very similar. I truly cannot understand how anyone could say H.S. has a decent quality of life. For all intents and purposes, people like H.S. (and myself) function little better than the average person with mild mental retardation. Such is the inexpressible hell of NLD-ers like H.S. and myself. We might be in possession of normal (or greater) on-paper IQ scores, but in most ways that MATTER, we are hardly less impaired than someone with an IQ in the mildy mentally ret*d range. The intelligence we do have seems to serve as little more than a curse. After all, we likely possess greater capacity for self-insight (relatively speaking) then the mildy mentally ret*d do. We do not have the luxury (though I have mixed feelings as to whether this can be viewed as a "luxury) of blissful ignorance. BTW....i'm fully aware of the fact that the vast majority of those with NLD/AS do not function at my level. For whatever god-forsaken reason, people like myself and H.S. are the gross exceptions rather then the rule.


At any rate...I am done apologizing for my "negative attitude" about my condition. I am tired of my fellow NLD-ers (and many "on the spec" as well) trying to tell me they've had similar struggles. Based upon what i've come to know about the overwhelming majority of people with NLD, AS, HFA, etc.....their struggles are remotely similar at the very most and vastly incomparable at the very least. I suppose I should be happy for those who are at peace with their own NLD/AS, etc....issues...but frankly.... i'm not. If that makes me a terrible ghoul ....so be it. I'd say it's a bit unreasonable for anyone to expect me to be happy for anyone else FOR ANY REASON when my own life is so damnably miserable. I feel like i'm one in a billion, if not one in 6.5 billion. I feel like the most desolate and wretched creature who ever existed....somewhat akin to Gollum in the LOTR. All I ask is that my "fellows" consider this before they tell me I ought to "embrace my uniqueness" or some other pointless and sentimental feel-good crap. If I should, then perhaps we should start "embracing the uniqueness" of the holocaust. Once again, maybe i'm a horrible monster for comparing my own sufferings to those who were tortured and murdered in the holocaust, but from a purely psychological perspective, I truly can't see how they suffered any more than I have. If nothing else...at least most of them were decent and capable people who were simply at the mercy of nefarious entities beyond their control. I am at the mercy of my own accursed brain and/or possibly, if i've somehow magnified my own neurobiological impairments.... (which is what EVERYONE....including the various psychologists who've tested me over the years would have me believe) my own bad decisions, monstrously distorted self-perception, laziness, etc.....


So to (finally) answer the OP's questions...and though I only speak for myself here of course.... the aforementioned and much, much, more is how it feels to be "low-functioning". The only thing which MIGHT be preferable to a cure is a winning lotto ticket for $25 million. But I only say this because i'm 40 now with no job skills, acceptable work history,meaningful college education, credit, finances, etc....ad nauseum.So for all practical purposes, a "cure" wouldn't do me very much good at this point right? It seems like it would be little better than a band-aid on a bullet wound...a case of "too little...too late". At least I could abandon myself to hedonistic nihilism with a winning lotto ticket for $25 million. I could travel to every place i've ever wanted to see, pretend i'm a neurotypical who made all this money in some brilliant real estate deal or something and hire the best high-class escorts money could buy. How pathetic eh?....I fully concur. Oh well...consider it an illustration of how intolerable my life is. Even the most mindless, vacuous and shallow escapism that amount of money would allow would be infinitely preferable to my current reality. I need not answer the question about liking any aspects of my condition. As far as treatments/therapies for LF kids....all I can say is that I wish some were available to me when I was growing up. It's hard to imagine i'd be any worse off if I did undergo such treatments/therapies as a child. I do not feel it's my place to oppose/support treatments/therapies for other LF individuals. These things should be determined on case-by-case basis after a thorough "cost/benefit analysis" and that's all I can say. I don't pay enough attention to the "awareness" media's portrayal of LF individuals to formulate any meaningful opinion about that either. If it's not obvious by now...my own issues are pretty much all-consuming and I don't have the luxury of being any sort of heroic advocate for my fellows "on the spec". It would be grossly unethical and irresponsible of me to try to be one. It would be a case of the totally blind leading trying to lead those with a bit less then 20/20 vision.

Again at the risk of being viewed as the most self-pitying person in the world....I cannot see my own personal situation as anything but a "horrible tragedy". Nevertheless... I agree....autism/AS/NLD, etc...is NOT a horrible tragedy for most. I just happen to be one of the unlucky few, that's all. I really don't know whatever happened to the idea of walking at least a mile in someone else's shoes. If a person tells you their own (or those of someone else) circumstances amount to a "horrible tragedy", i'd say anything less than omniscience gives you no authority to issue any absolute denials of that. Sure it's fair to be SKEPTICAL of such claims, especially when one is dealing with the same (or similar) condition themselves. It's NOT fair to simply dismiss someone else's "horrible tragedy" out of hand though and just assume they're merely depressed, exagerrating, seeking pity/attention, etc.....

I don't see any evidence to suggest vaccines are causing autism...nuff' said about that whole vexatious topic.