Why Asperger's should be separated from Autism

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Hey I think you're responding to my post to League Girl, sorry bout the confusion mate. I didn't quote her at first, ammedned now.

I am confused though about how your post speaks negatively about the organization, maybe I'm missing something. Alls I see is you got sick and tired of being reminded that you're Autistic, even though you put yourself in a situation where it was bound to keep coming up....?????

Autism speaks caters to NTs, not Aspies. Maybe you should also keep that in mind. They design their campaigns for NTs to have awareness, for NT minds to respond to. Not to keep Aspies satiated.

No, no, I don't mind being told I'm autistic. That's a non-issue; of course I am. It's more the constant assumption that autism means my life's inferior to everyone else's, that I'm to be either pitied or admired as some kind of inspiration, that really annoys me. I hate the whole medical model of disability. I'd much rather be seen as a fellow human being who happens to be autistic, and thus different. I'd rather have my disability acknowledged and accepted.

My old online friend pressured me to join there and I eventually did. I don't go there much like I used to. It had lot of drama there because of trolls and one aspie who liked arguing with the parents about their kids. But last time I popped in there (which wasn't too long ago) it looked better and troll free and it had many new people.


Yes to your answer.

Nope.

"Cure" is what millions of dollars get spent on to fund researchers looking for autism genes, or trying to make a mouse model of autism, or something else that at best is not likely to be the SciFi cure that people imagine. One argument AGAINST cure-research is that some of the money that goes into it could be used to help EDUCATE and ASSIST autistic people right now. $1,000,000 better spent on a mouse model, or education? If you chose education, then you are sounding awfully anti-cure.

That is weird. I thought Autism Speaks is supposed to be for Autistics. Strange to have a charity which exists to cater to people who are different to who it is supposed to be helping...

As an Aspie who went to the statehouse last summer to beg North Carolina legislators to pass a sin tax that would have dampened the blow to the state budget cut for families with LFA kids,* I think the issue is complicated. I have LFA friends, and I do try to speak up about Autism, especially people who are nonverbal, not to speak for them but to remind people that they exist and are human beings, children of God to whom we owe no less respect than to anyone else. I know that many of the wealthiest countries on earth are doing far less than they could and should to make life easier for people with LFA and their families. Autism can strain relationships and force families into poverty, but it seems like more of a societal problem than an inherent part of life on the spectrum.

That said, I have concerns about a cure. My parents discovered that I was different from other children when I was very young. From then on, I was tested often. Life was a parade of professionals trying to make me normal. A number of them treated me badly. Most of them told my parents to set their expectations low. I was taught that my very ways of thinking and being were pathological, a disease to be cured, an abomination. They did their best to obliterate me. AS and LDs are not what took away my childhood and wrecked havoc on my family. Normality is. Today, I can pass as NT, but my realtionship with my parents will never be the same. My sister grew up seeing me often angry and depressed, often at least borderline PTSD. My whole life has been a battle for my autonomy and personhood, for my soul, the very integrity of my mind. There is a rage in me that nothing in this life will quench.

I was more obviously different when I was little, often "in my own world," but I was happy. I felt safe, which I may never feel again. No one ever asked me whether I wanted to change. If there is a cure someday, I want people on the spectrum to have a choice, which means not curing small children. I do not claim to know the answer for people who are completely unable to communicate, but anyone who can in any form should be able to decide for themselves. Since the theoretical miracle pill is unlikely to be produced in our lifetimes, education and long term treatment programs are probably the best way to make life easier for LFA people. First world countries can find the money if they look hard enough and tap public and private sources. We can provide people with LFA with a better quality of life.

I know this is a topic that triggers strong emotions, and I may not have been posting here long enough to say this, but the incivility of the dicussion here is worisome. Acusations and name-calling only make things worse.
*They voted it down. Tobbacco farmers donate more to campaigns than families struggling to care for children with disabilities.

People on the outside are often ill-informed and nearly as often could not care less in any circumstances anyway. All Autisms, including AS and PDD-NOS can be serious and debilitating. Do you troll the web finding sites that describes any of the ASDs as "mild" and lecture them to prevent "outsiders" from buying into this fantasy many people have that AS and PDD-NOS cannot be serious and debilitating?


Do you think anti-cure people who are not anti-communication necessarily do not find your views offensive? You are entitled to your views either way, which is why you do not see me seeking out some website you post on for the purpose of trying to lecture you into not sharing your veiws with others. You can argue your point of view so much as you like. I may or may not disagree with it, but it would take a lot more than mere disagreement or even offence before I would try to influence you to be silent about it.


I think it is a sad state of affairs when a 28 year old man feels more humiliated by wearing diapers than by having urine run down their leg. Many 28 year old people have a need for diapers. None should have to feel humiliated about it. Maybe there is no connection between the message that Autistics are not ok unless they are cured and the sense of humilation your brother feels in respect of the notion of diapers. Maybe more prominant advocacy of accepting and valuing people as they are would not give people like your brother scope to take appropriate care of their reasonable needs without feeling humiliated...maybe....

How would asking why your brother makes a choice imply or assert that I think he does not know something?


I am well aware that most people have a sense of dignity. None of my comments asserted or implied that your brother would not know he was wearing a diaper if he chose to wear one. I do not see anything wrong with someone wearing a diaper and frankly it is odd to me that someone would be more humiliated to wear a diaper than to urinate down their own leg, just as it would be odd to me if someone chose to menstruate all over their own leg rather than be "humiliated" by their own use of sanitary products.


Nothing in my original response implied otherwise or did not take such into account, so I still do not understand what the point of referring to the existance of such quotes is in respect of my comments.

You are generalizing your way out of reality. I have AS, I am disabled by it. It is a disabling difference to me. Other peoples' mileage may vary, but clinical AS is a pathological entity, hence why it is diagnosible.


They are entitled to their view no less than you, and they are entitled to express that view within reasonable limits. If you do not like it, argue the point with the individuals concerned; since you cannot silence them anyway, attempting to persuade them to your point of view makes a lot more sense than starting this thread to chastise an entire population, many of whom do not share the views you are complaining about, while evidently claiming to do this for the benefit of a population that includes people who do hold the views you are complaining about.


You are very probably not going to get what you want in that case, and people with Autism (including Aspergers Syndrome) have just as much right to express their views on this issue as any non-Autistic person does.

Learning to read braile is one way in which vision impaired people can attempt to overcome a measure of their disability. They are not cured by this; they are no less vision impaired after learning to read braile. Overcoming disability and being cured are two entirely different things. It seems to me that if someone is cured of something they have no need to overcome any disability arising from the "cured" pathology as there would not be any disability if they were cured. It is quite common in fact for people who are anti-cure to be so because they perceive that the only "cure" is probably prevention via eugenics, and that the money and effort wasted on looking for a cure should be spent on research and services that improve the lives of Autistic people, for instance by helping them overcome disability.


Well I consider that they are failing at that miserably and frankly if they do not know better than to spread misinformation that is so detrimental to our interests and sense of dignity, maybe they should go identify an enemy and "help" them instead.

I think that it is astounding and frankly disgusting that they get to spread what I see as hate speech about people with Autism, while calling themselves Autism Speaks and claiming they exist to spread understanding about Autism. No one would accept a group called "Homosexuality Speaks" spreading false and negative information about homosexuals being "stolen" marriage ruining entities that drive reasonable parents to consider killing them and to openly discuss as much in front of them, but when it's Autism that is ok. I wonder if it is because many people think that people like your brother and I do not know better or have any sense of pride or human dignity.


Many people who are anti-cure are anti-cure precisely because they believe there will never be any miracle pill, and that the only "cure" is prevention. They would rather efforts were spent on the things that you describe as being good but which are not actually cures.

In modern society all children receive educational and developmental opportunities and all should get appropriate opportunities. We do not call appropriate educational and developmental opportunities curing when they are provided for non-Autistic people even when the provided education or developmental opportunity is to meet an exceptional need arising in the course of a disability; we do not (for example) construe that we have cured hearing impairment when someone with profound hearing impairment learns to communicate using a sign language.

There are many kinds of "anti-cure" views that have nothing whatsoever to do with being anti-education/anti-development, and are premised on the fact that less research into "cures" would free up resources for research and the provision of interventions of an educational and developmental nature.

I expect that people who have Aspergers and who believe that no person with any kind of Autism should ever receive appropriate educational and developmental opportunities along with appropriate care of other kinds, are very rare indeed. That's not "anti-cure", it's probably pro-neglect, not to mention a very odd intepretation of the word "cure". We send non-Autistic children to school to learn, not to be cured, and while we expect non-Autistic children to develop out of childhood and into and throughout their latter life stages, we do not consider childhood a disease we are curing.

There are enough people with Asperger's who are unhappy and need help. Why does this need to be a discussion of differentiating people? Why can't we just decide to help those who need help? That doesn't require an Asperger's versus Autism attitude. That doesn't even require a label!

Many autistics have felt what it's like to be continually ostracized. For those who have the cognitive capacity to grasp that and experience anger over it, it's understandable that once they find a reason (in this case, the label "autism") to be proud of themselves they hold onto it vehemently and perhaps aggressively.

I don't suspect most people on this site want anyone to suffer. The issue of fighting against a cure is one of self-worth. For someone to say that autism should be cured, to someone who has fought to be thought of as "worthwhile" their entire lives, it's once more being told they're broken, a freak, and unworthy. So there is anger. A literal cure may never involve them in particular, but because of the concept of a larger label, for someone to say "autism should be cured" is a painful idea.

Most pro-cure people don't want anyone to be hurt, but they don't always understand what they are communicating when they say autism should be cured. They are making autistics, who have finally found pride in something about themselves, feel unworthy again, ostracized.

Most anti-cure people don't understand some of the pain that families/parents experience trying to raise a child they struggle to understand, communicate with, and help.

The irony is neither side is cruel and both sides essentially want the same thing, even if they don't agree how to go about getting it. Although I'd imagine a little less antagonization and defensiveness on both sides would go a long way. It's sad though that Pro-cure and Anti-cure groups have created a war that really misses the point of the whole thing and just creates additional problems.

This is a big concern. From my own research, while I suspect that the postnatal environment plays a considerable role in the development of a person, the underlying "seeds" of autism are laid very early on in gestation during embryogenesis (within the first 40 days following conception). Abortion, however, is not especially likely either. For example, take Down's Syndrome: these embryos/fetuses are frequently aborted. But someone with a trisonomy of chromosome 21 will develop Down's. For all the genes that have been associated with certain multiplex autism families, these genes will not GUARANTEE an embryo will develop autism. There are plenty of nonautistics who have these markers as well. So if that main screening method used is genetic screening, all the screening may say is that autism may be more likely but cannot tell whether it will develop for certain. Most parents, I would imagine, would not abort a pregnancy on the offchance the child could be autistic. (This doesn't include other genetically identified forms of autism, like Fragile X, etc.)

Are there ways to cure during that 40 day time period? Possibly, especially if there are any environmental in utero agents that play a role (such as maternal hormones, which could feasibly be altered during pregnancy). But this is a long way off and would require confirmation that the condition would develop, otherwise tampering could create other unwanted effects on the developing embryo. And as it stands, while autism is a highly heritable group of conditions, it's not "inherited" per se. It's quite possible that environmental agents, e.g., maternal hormones or infection, may play a role in the severity. In which case, genetics would only confirm a predisposition, not guarantee that an ASC would develop.

Playing god in the womb is extraordinarly complex and risky. Especially when you have no guarantee that the embryo is developing autism or not.

Last edited by Sophist on 15 Apr 2010, 8:07 am, edited 1 time in total.

It greatly irritates me when people try to separate the two as if they are two separate entities. I can understand people wanting to hide under the cloak of the name "asperger's" as the word 'autism' triggers fear in the general population, but the fact is; they are both autism.

Yes; it works the other way around too. People assume because I'm diagnosed Asperger's, I'm an eccentric genius with little if any disability. That stereotype has hurt me a great deal, even as it let me have opportunities they wouldn't give if the exact same impairments had been called "Autism". It's not that there isn't stuff I'm good at; it's that it totally ignores the very real deficits I have to deal with every day. People assume I'm capable of doing things that are totally unrelated to my strengths, because all they see is "Asperger's" and all they hear are the big words. I'm worried that one day I'll be pushed too far, too hard, and I'll be right back in the hospital.

Because of this assumption of competence where I'm at best hanging on by the skin of my teeth; that, and the way I push myself--a bad habit that's the direct result of having that assumption of competence made my whole life, and my autism called "bad behavior" and blamed on my own lack of willpower and maturity--I'm being basically assumed to have none of the problems that people who are labeled "LFA" have. This HFA/LFA split isn't just artificial; it's damaging. Depending on your label, you can be either assumed to be a stubborn, immature type who isn't trying hard enough, or you can be assumed to have no skills at all so you never even get the chance. It's just more complicated than that. We've all got bits of "HFA" and "LFA" in us, whatever other people label us; it's all mixed up together and you can't assume we're one or the other because really, we're not. Having the same label could let us all access both the opportunities and the assistance we needed.

I don't know how many stories I've heard of people labeled "LFA" and only given the opportunity to learn after their parents pushed ridiculously hard for it, and turned out to be talented after all... Well, what if their parents hadn't pushed? And I've heard plenty of people talking about how they were assumed to be "high functioning" until they eventually just burned out, broke down, and ended up being able to do a lot less than they would've been able to do if they had been given the help they needed--I know, 'cause I'm one of them.

This thing really hurts us. Whatever label you have, it hurts you. We need to get rid of them and take individual cases on an individual basis. This NT need to generalize can be handy when they have to process a lot of information all at once; but in this case, it's backfiring. Until they learn why they can't generalize autistics, we're going to keep having these same problems over and over.

The "experts" I'm referring to are the psychologists specializing in Aspergers and Autism. They admit to being too confused over understanding the differences. They take the approach of, "Let's simply things for ourselves by waiting for proof of how damaging it can be to ignore the fact that Aspies and Auties have a different genetic structure." I.E., They (like most others in this world) do what makes life easiest for themselves until they're forced to have to deal with what they don't want to.

There is an incredible diversity of susceptibility genes even within a single categoric diagnosis. I.e., one person with Asperger's doesn't necessarily share the same cluster of susceptibility of genes as the next person with Asperger's.

This is a behavioral continuum with many similarities between the different subtypes. But genetically and neuroanatomically/-physiologically it's probably more accurate to think of the spectrum as "the many autisms." There are similarities of anatomy and function amongst individuals on the spectrum, providing a common thread, but enough differences as well that to talk of any of these as "a condition" is probably too general.

There's little point in debating Asperger's versus Autism when even individuals within a single diagnostic category may not share the same etiology.

The whole idea of a single solution to autistic disability seems foreign to me. The LFA's who are described as "real autistics" do not only have autism, for one thing. The most common co-morbid for LFA I would assume is retardation (although I'm aware that testing is complex) or learning disabilities. That cannot be cured, obviously, but even people with IQs in the lower ranges are capable of learning and improving.

Since the autism diagnosis doesn't require mental retardation I think the average "typical" autistic individual would have far less problems then the typical autistic individual with mental retardation. Additionally, I find it odd that relatives of people with LFA seem to identify them so strongly with autism, but never with mental retardation. Is MR somehow more shameful?

I would be interested to know what problems people with moderate to severe mental retardation but no autism have, as a means of detecting what is autism and what is a result of impaired cognitive abilities. Of course I imagine autism and retardation interact to make matters worse, but when people say it's not autism unless it's LFA it makes me feel like they're mixing things up. LFA is autism with a set of co-morbids (aside from MR, perhaps epilepsy or processing disorders) HFA is autism with other variations of co-morbids, or no co-morbids.

If one wants to be factually correct, the "real" type of autism is autism without retardation. Of course, there may be very low-functioning individuals there as well, but my impression is that even when LFA is based on overall functioning rather than IQ, there are often co-morbid conditions which cause a lot of problems. Why not address these as well as the "autism monster"?

Is mental retardation somehow more shameful? Mental retardation is the single most despised neurological condition there is. People who have it are treated with pity at very best by those who don't love them. (Strangers, co-workers, teachers, paid helpers). The single highest compliment parents are given about their child?- "John/Jane is such a bright child". What word is destined to become an all-purpose insult? Whatever word the medical community has used, is using or will ever use for mental retardation. What do people often say to make themselves feel better when they are mistreated? "Those people are stupid. I'm so much smarter than them.

Parents, myself included, go through all sorts of mental gymnastics to reconfigure the stupid/smart dichotomy into somehow not having anything whatsoever to do with mental retardation. But at the end of the day it is clear that the world at large values intelligence above all else. People at the high end of the IQ scale will shake their heads in disagreement, having not won any popularity points for their intelligence. However, other adults give a grudging (and I do mean grudging) respect to that intelligence, even if from an uncomfortable distance. High IQ people chalk this uncomfortable distance up to jealousy.And they are often right. Because intelligence is so valued. What do parents want when their child is born? A smart child. Because intelligence is so valued and lack of intelligence is so despised.

And so, there is nothing odd about parents identifying their child considerably more strongly with the autism label than with the mental retardation label.

My daughter scored very low on an IQ test (no, I will not post the number). I found WP googling "IQ test, autism". IQ tests get discussed so often here that Google flagged it quite naturally. What I have found here has been a curious blend of IQ supremacy posts (just in certain threads, blessedly) and disability advocacy. (And a whole lot of other stuff too- awsome advice, fine philosophical discussions, etc.). The IQ supremacy posts make me go ballistic and I ill-advisedly post in those threads, perhaps earning me a nod from the "those meddling NTs posting here" thread that is happily sinking into the archives. But I go ballistic because I had hoped that this would be a place where everything about my daughter could be embraced even if she can't post here herself. (And perhaps some day she will be able to.) I take perhaps undue comfort in the many threads about how IQ tests aren't particularly accurate for autistic people. I say "undue" comfort because hoping hoping hoping that this is so means that I am buying into the "intelligence=better" paradigm, despite all my most arduous gymnastics. I read and re-read everything written by people who preface their post, "I did really badly on an IQ test as a child and..." and of course everything by Callista and Anbuend who are the most vocal about advocacy. Reading (and re-reading) all those posts about how IQ tests don't work well on autistic people does make me one of the parents identifying strongly with the autism label and trying to run far far away from the mental retardation label. But after reading this maybe you better understand why.

Why should AS be separated from autism for the time being? Because there has not been enough neuroscience research done on AS groups vs. HFA groups. Maybe AS and HFA are neurobiologically exact in every other way but the speech delay. That isn't known right now. But it is important from a neuroscience perspective to understand why Aspies don't have speech delay and HFA individuals do. I don't feel that I'm autistic. To me, autism is a very severe disorder that compromises a person's abilities in many areas. I function pretty well. I feel that my AS is a form of Nonverbal Learning Disorder. I wish that more research would be performed on NVLD AS types and autistic AS types.
-OddDuckNash99-

Curing the symptoms which impair an individual from living as they would like to live, is different from curing someone of what they identify as their self.

Asperger's mainly differs from HFA in the narrow focus of the developmental hindrance, I wrongly assumed that it was mostly related to the right-brain/left-brain differences, and which portion that the person registers their "self" as being located in. I learned that while I am strongly right-brained, feeling my "self" to be located there, that is not a universal or uniquely AS trait.

The part which I have noticed is that normal brain development involves a type of subtle communication between the two halves of the brain, in such a way that people can interpret the mental and emotional states of another person with the "silent self" in the hemisphere they don't identify their "self" being located in.

Having the ability to pivot that silent self on to another person, and allow it to interpret and process the subtle meanings and changes from body language, verbal cues, implied meanings, and so forth, is something utterly foreign to me.

I can not do this, I have to try to process that information in the same "self" that I am thinking in, which is a much less natural, much more tiring, and much less accurate process.


If there were a simple way to allow me to do this, such that I could suddenly gain access to those social communication channels when needed, I can not think of a reason to turn it down, it would be like gaining a new sense.


I could see that sense being irritating though if I couldn't shut it off, as it would be something that constantly impinges on my awareness in times when I actually enjoy my solitude.


If I were given the choice between "curing" me, or curing an LFA person, I would obviously choose to give them the option, I can adapt and am comfortable enough with my abilities to communicate. I would rather people like Anbuend be given the abilities they would like to have, and appreciate to a far greater degree than I may.


The problem is that I can't imagine a pill you can pop which simply changes the way your brain wiring works on a level that would undo autism, without risking immeasurable damages.

So I personally prefer the terms... assist, enable, alleviate, fix the things that are impairing people first, then if they want to go further, they can tell you themselves.