Time to stand up against anti-cure

Post Reply New Topic

Ironically enough, after interviewing over 200 medical doctors and 95 psychiatrists on the subject of the word disease, only (i believe, this number is correct, and I am too lazy at this moment to go back and dig through my notes for it) 6 of them differentiated between a disorder, syndrome or disease. That is .02%... I do not believe that constitutes "A lot" when the impression from the contstruction of your sentence seems to imply a majority... HOWEVER... even if it was a majority, how does that change that the negative connotations associated with the word have NOTHING to do with the actual definition?

My point is, and always has been, the emotional connotations that have become associated with the word disease make twitch when it is mentioned with no basis in fact...

As I stated in my piece, the words whore and prostitute have the exact same definition, but if you call a prostitute a whore, you are looking to get knifed.

By letting an emotional reaction based on an inaccurate interpretation of a word govern our interactions with the medial community, we harm ourselves... Those that scream "autism is not a disease" most often INSIST that "there is nothing wrong with me." And to get the help that you outlined, it requires that one accept that help is needed... it is as much the attitude as the word that needs to be reappraised.

I'm not quite sure why you mentioned that interview. 295 doctors....

I could also cherry pick doctors. Even if it was random, I highly doubt that it's an accurate statistic with just *one* interview. What you said proves absolutely nothing. I said a *lot* of doctors in the medical community do differentiate between words BECAUSE of, well, you already said it: emotional reasoning. I stand by my statement.

In this case, emotional response matters. Why? The motivation behind words matter. In this case, when the public speaks of a "disease", it is considered a negative situation. A situation to be CURED because it is ABNORMAL. Regardless if you like that or not, it's reality. You may think logically, you may be right in a technical sense, but you are wrong that the emotional appeal behind certain words do not matter.

Speaking of words, do you know why the term "whore" is offensive? The motivation behind the word. People often use the word "whore" when they have the INTENTION of insulting someone. Taken purely out of context, it probably doesn't matter. However, taking things out of context is naive. Words matter, and so does the intention.

Things like autism AND psychological problems need to be seen in an empathetic light. If saying the word "disorder" instead of "disease" (regardless of actual definitions) helps create that, then who cares? I still maintain it's NOT a disease for the reasons I have listed. I'm not interested in getting in a purely factual debate because I already know what the strict definitions are.

What's wrong with people saying "There is nothing wrong with me"? I hope you realize they don't literally mean that most of the time. If you don't understand, let me translate it: There is nothing so defective about me that I should be considered subhuman. If people truly believed there was nothing "wrong", they wouldn't bother saying they are autistic. It would make no sense to label themselves with a diagnosis if they weren't different at all. The people saying this are most likely into neurodiversity.

It will relate this to something that is somewhat similar in many ways: Clinical Depression. People who are severely depressed might also say "There is nothing wrong with me." This is because people constantly dehumanize them as if they are so abnormal that they have no humanity left. Some people (especially in the past 50 years) have tortured those with severe depression. They treated them like they treat animals, because they think animals are of lower status than them.

If what you want is a precise thoughts and wording in a public atmosphere, it won't happen, no matter how hard you try. This is why people "dumb down" medical terminology, even though it may not be "accurate".

I do have a question with you: What do you have against emotional connotations? I see absolutely no reason to change my mind about me labeling autism as a "disorder" versus a "disease". I like factual information as much as, well, people who like factual information. However,denying the way the public thinks of the two words in terms of an ethical discussion on a "cure" seems naive. Given the stigmas and hate I've faced with other problems in my life, I still gladly say I do NOT have a disease. This is part of me, and I give in to my emotional side when it comes to that word.


Edit: It's possible that I'm making irrational statements. However, my psyche still hurts. You see, in my past, the word "disease" was used against me in severely traumatic situations. My brain also connects the word disease to my sense of self. If I'm autistic, and it's a part of my brain wiring and who I am, then I am diseased. A part of me refuses to be unsympathetic towards my mind since I've dealt with so much.

I'm thinking this might be some what of denial on my part. I wanted to be correctly known as being autistic, yet my mind does not want to accept it is "diseased". Since how people word things really does effect me, I will continue to say it's a "disorder". However, I cannot deny that valuing factual information would mean admitting you are right. Sometimes, being objective hurts, though. This is something where wording it differently really is the difference between me being in a deep depression or me being empowered. I suspect the deep depression is my mind's way of trying to cope with having a "disease", but it's a bit too much for me at the moment to admit this. So, for now, I have a disorder.

I still think there is the issue with the public, though. A debate of a cure would no doubt be commented upon by members of the public. What is one to do if people still view disease as all bad? What if one doesn't want to change their autism?

I say

Cure the symptoms of Autism that are tangibly harmful for yourself and others.

Tolerate the symptoms of Autism that are essentially harmless.

Cure advocates and anti-cure advocates need to come to a consensus!

I didn't read past this. The inherent disrespect in that statement does not further conversation. I have no interest in discussing anything with someone that would insult someone in this manner.

I wish you well.

*Before I say my response to that, I wish you WOULD have read further, as you would see I actually agreed with you towards the end*

Well, hold on a minute. You make logical arguments and don't support emotional reactions to words, yet you tell me about one interview that probably cherry picked doctors without a link to a source. How am I supposed to take that? I COULD also cherry pick doctors that would have agreed with differentiating between disease and disorder. I'm well aware that in the medical community, there is no defined definition for either. Yet, that I still said "a lot of doctors", because it's true.

Can you really blame me for not taking your one interview of a few hundred doctors as anything proving your point, though? As someone who is logical, surely you could understand how that doesn't fit with the rest of your argument.

Anecdotal evidence does not have a source when it is not published. The series I write is based on my personal knowledge, which has been accumulated over my years studying my condition. The citation (lack thereof), was explained by my statement "Ironically enough, after interviewing over 200 medical doctors and 95 psychiatrists on the subject of the word disease, only (i believe, this number is correct, and I am too lazy at this moment to go back and dig through my notes for it) 6 of them differentiated between a disorder, syndrome or disease."

I gave anecdotal evidence supporting my opinion. I cannot give a citation as I am not in a field where my finding would be publishable... nor was the methodology scientific in nature as it was an oral interview given to these professionals and cannot be published as an experimental paper as there was no experimental methodology, control group, or even experiment.

Hence my clear statement that it was based on interviews of professionals in my quest for knowledge about our condition.

I know why there are emotional connotations to the words we use... and I know the intent makes all the difference, but I do not believe that circumstance applies (for the majority) of health care professionals that use the word disease... If we disagree with the word, it would seem to be an issue with us... and not them...

In the piece I linked to... I cite the reasons that we need the word... but I will sum it up here... Those that are opposed to the word disease state, vehemently, that the reason they are opposed is because there is nothing wrong with us... we are not diseased because it is just a different way to think... The problem with this is (from an NT perspective) if there is nothing wrong with us... we have no right to ask for accommodations of any type, services, education, Rx, understanding... because we are just different... like everyone else. We are special snowflakes, just like they are.

So, we have to decide. If there is nothing wrong with us, then we need to suck it up and just lump it, like the NTs do. Learn to deal with their loud, oppressive, lying is socially acceptable, overwhelming, harsh light filled world and not complain about it or ask for understanding... Or we can ask for understanding and accommodation as special needs individuals... but that comes with that word...

And the difference in medical definition between syndrome, condition and disease... is negligible... Most of the reason people will differentiate is because Autistic Spectrum Individuals (according to my non-citable interviews) is the knee-jerk emotional connotation to the word disease... they chose an alternate word that does not upset people that means pretty much the same thing.

It was not clear to me that you are the one that did the interview at all. To me, how I read it was as follows:

I found this interview online that states most of the doctors a person interviewed did not differentiate between the words "disorder" and "disease". The person interviewing did not use any scientific method, but I'm using these results to disprove what I think you're implying.

Obviously, this was a miscommunication. I'm sure you've met people before who do nothing more than "pull information out of their ass" and expect you to agree that disproves a point. Even though you didn't say "HAHAHA, point disproven", at the time, it sure did seem like you were implying a mere interview boosted your argument.

Do you really think that people don't take something seriously when it's labeled a disorder? In my personal experience, this was the opposite. I read your blog about all of this. I even saw the picture of that kid that said something like "Autism: Being an a**hole is now a disease". I don't think that's related to word usage. This is because people view autistic people as doing everything on purpose. No matter what you call autism, this will be true of people. This is also true of mental health disorders that are labeled "difficult" no matter if someone labels it a disease or disorder. If a disability is not physically obvious, humans will insist one is "faking" it in order to "get away" with something.

In your very last paragraph, you've pretty much stated what I've been saying. People choose words that may mean the same thing, but are more empathetic. The difference is you seem to think the more empathetic terms allow NTs to invalidate the seriousness of autism and the need for services. Or, even going a step further, that it merely allows people to think of autism as a difference and, by extension, we choose not to be NT to a certain extent.

Neither are of scientific basis. One is pure anecdotal with psychological concerns. (Not saying that's bad, btw.) The other is technically not a finished experiment. Assuming only US doctors were interviewed, 200 out of some 800,000 is too small a test group for anything conclusive. Although I would be very curious as to the results; in pharmacy school, I was taught a big difference between disease, disease process, and disorder.

Please tell me your thoughts on the differences, Teyverus.

Yes, I agree neither is scientific. I avoided using the word "most" in referring to how many in the medical profession differentiate because I truly don't know. All I know is my own experiences, and I have ideas on why doctors may use different terms. I also frequent medical/nursing websites, so I know this is a big issue for a lot of people within the community (in order not to offend patients). Even ASD is "autistic spectrum disorder". Sometimes, being too accurate can do a disservice to patients. It's the public I was more worried about, though. The public often has no interest in the type of accuracy we were discussing. They have specific associations with certain words, and I was worried that within public debate on a cure, word usage could potentially do some harm. I don't know if this makes sense to you or not. Maybe I failed to explain it correctly and I'm not getting my point across. It's like the rational side of me agrees with calling it a disease, but the emotional side is like "nope".

It's kind of like the reason an ER doc doesn't explain the technical aspects of a surgery to save someone's life in the moments it's about to be preformed. The family and/or friends of the person don't want to hear that. They just want to know some general details and a translation from the doctor to layman's terms. It's more empathetic that way and easier to understand.

I disagree... Words have power... I have many examples, but most of them are political, and as such, I will not use them here... This, ARTICLE puts it into a psychological perspective.

Ummm... that is why I went to such lengths to explain that it wasn't scientific and therefore uncitable... and, technically, it is not an unfinished experiment... it wasn't an experiment at all...

HOWEVER... statistics 101... representative samples... with proper care being taken to get a proper spread of gender, location and age, it is possible to get an accurate view of the population in question with no more than 100 individuals in the sample size. How truly accurate that is, I don't know... but it is used in all anecdotal methodology and statistical analysis. And the gender, age and location breakdowns were as close as possible to a statistical spread (needed 5 more to complete that)...

The point of that is.... I have gone to great lengths to research my opinions on the subject. I have correlating information to it. Instead of attempting to dispute methodology, try replicating the results... all too often, especially on this subject, people talk to one doctor who has a different opinion. and will state that "doctors feel this way." I interviewed these people to be able to understand my condition better and to get away from that statement

Sorry, this is so funny to me, Feralucce. I'm not laughing at you or what you are saying. It's pretty much like we are saying the same thing, but we just disagreed on which words have which powers. I believe I've read that very article you linked to me before. I understand.

I still do think NTs invalidating autism is more complex than word usage being the cause. In fact, I think their word usage reflects what they already think. Perhaps we have just had different experiences with word usage?

to Bleh:

This is the basics of what I was taught:

A disease has a pathogen or chemical at the root cause, something that can be removed and the patient returned to normal operation. This is mostly treated with cures. Examples would be chemical toxicities and viral meningitis.

A disease process is in reference to the body's reaction, such as its immune response. This term is more likely to be used for things we aren't quite sure what is causing it, but the patient wasn't always like this. A good example is Traumatic Brain Injury. As it is irreversible, it's also given the subset 'chronic.'

A Disorder is abnormality that is the patient's normal. Symptoms are treated. Let's take Polydactyly (more than ten fingers) for example. The patient was born with 6 fingers on his left hand. He can get it chopped off, but in the end he still has the gene. He's still able to pass the disorder on. All the chopping did was treat the abnormal growth. The only cure would be the Ultimate Cure.

But in reference to the little argument over wording, Alzheimer's is a great example. It is more accurately defined as a disease process, but is still labeled as a disease; the reason being to add that emotional hit as to not only call attention, but to provide funding, and to try to unstigmatize the patients. They can say, "Yes I'm having problems, but I got this disease in my brain that's messing me up." However I remember a time when Down's was considered a genetic disease, and now 67% fetuses spotted as such are aborted. So I do agree that wording is a very important thing.

And as for Statistics 101:

Yes that sort of study may give you an approximation, assuming you controlled for everything. However in the end, the findings will always be questioned for the simple fact of it being an approximation experiment. More interviews will be needed for accuracy. If you want some help in that department, I am very curious to see what the findings will be.

I agree that there is much more to it.
I think the sources, however are as follows

a) Lack of understanding of our condition. Lack of public education and information is a big contributor, but words again, are hugely at fault (the piece HERE addresses that)
b) The rash of over diagnosis that has been happening... (i wrote about that HERE)
c) there, literally, is no frame of reference for them. For most NTs, our modes of thought, cognition, and coping mechanisms are so foreign that they have no way to actually understand us.
d) There are neurological differences between Autistic Spectrum Individuals and NTs... (discussed
HERE)

Not by definition. Achondroplasia, Cystic Fibrosis, Familial Mediterranean Fever, Fragile X, Klinefelter Syndrome, Parkinson's Disease... All genetic diseases (as listed on www.genome.gov - the human genome research institute)... There is no external source for these and they are diseases, by definition.

Regardless of what you learned or were taught... the MEDICAL DEFINITION OF DISEASE is as follows
: an impairment of the normal state of the living animal or plant body or one of its parts that interrupts or modifies the performance of the vital functions, is typically manifested by distinguishing signs and symptoms, and is a response to environmental factors (as malnutrition, industrial hazards, or climate), to specific infective agents (as worms, bacteria, or viruses), to inherent defects of the organism (as genetic anomalies), or to combinations of these factors :

Further... Search at the Mayo clinic... HERE


1) It wasn't a study. It was for my own edification.
2) I don't care if it is questioned, honestly. It was for my own information and I feel that the findings are representative.
3) It was not, and has never been an experiment... It was an interview. There was no control, methodology, etc.
I have moved on from that part of my life and are working on other things... While I appreciate the offer... I am no longer interested in pursuing the line of inquiry...

The problem with the reactions to words is that regardless of how we feel about it, whether the intent is something unsavory, if the word is applicable, then it is... i.e. If a condition fits the definition of disease, then the condition, disorder or syndrome is a disease... period... All squares are rectangles...