Anti-cure Cowardice?

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That's because the definition of what is health has become too standardized and reliant on the words of physicians and other degreed official types.

NewportBeachDude, as I posted earlier (and you promptly ignored), my daughter is autistic (with a side of mild MR, but I think that's just because when she was 4 her verbal communication skills were insufficient to administer the standard toddler IQ test). And I can tell you, having been here with her from the start, that she has ALWAYS exhibited signs of autism. My mother-in-law kept saying, "No, there's nothing wrong, she'll grow out of it," and similar phrases meant to be conciliatory, but from the beginning she lacked appropriate nonverbal signaling, did not babble, and only cried when she was in pain or had soiled her diaper. Later, sometime after the age of 2, she took up babbling, but there was no sense to it - she only did it as a form of stimming, I do believe. Meltdowns began around this time as well, as her needs became more complex, and she grew visibly frustrated at being unable to communicate them.

Today, due largely to PECS and what turned out to be a highly informal version of Floortime (I just called it "playing with my daughter, on her own level"), her communication skills are advancing. At the age of 6, she's in a Life Skills first-grade class, and doing quite well (she's begun indicating choices by going through the entire conversation - "Juice? No, not juice. Chocolate milk? Yes, chocolate milk!" It's cute as the dickens, I think).

The point remains, however, that in contradiction to claims made earlier, not every single case of Kanner's autism is regressive - not all children develop "normally" from birth, hitting all those legendary milestones, only to be stolen by the elves and replaced with a changeling- er, I mean, stolen by autism and replaced with a shell... (As far as I can tell, the only difference between the changeling legend and the modern-day "autistic shell" legend is terminology, and the fact that few people recommend abandoning your autistic child in the woods in the hopes Autism will take its child back and return your own.)

"I think I know a little more about this than you do." How pathetically condescending. I have special needs training, have worked as an integration aide, have worked for over 10 years with both "normal" and special needs children, am autistic myself as well as my father and uncle, and you tell me you know more than I do???? What are your qualifications? As far as I can see you're just a smart alec who thinks if he talks a lot that makes him inherently qualified.

Let's not bother discussing anymore people, NewportBeachDude knows it all.

lastcrazyhorn, I hear that. Completely agree with you.

Sleepy, for example, an anti-cure person said to me; "You can't cure something that's not a disease."

They won't even consider the possibility of allowing a cure, because the very idea offends their sensibilities, that someone wants to cure autism. And what does this bode for someone who does want a cure? An argument, which they'll win by force of numbers, shunning the pro-cure. I see it happen often on a few other forums, especially those which are all for autistic rights... except the right to choose to be cured.

Out of fear, to put it in solid terms, they fight the idea of a cure, because of the misguided fear that a cure will kill their personalities, or that it will be forced on them. It's base paranoia, spread to mass delusion, and the only ones who want a cure get shut out by the Aspies busy building their Autism Cure Shelters, where cure is never talked about, unless it is to be bashed.

Wheres an Autism Cure Shelter, I want to visit it! I didnt know we built them. Who pays for them?

You can treat things that are not a disease, but however you can not cure it.

Joeker, first of all, there is little protection on the Internet from general harassment. I'm not even sure a push into suicide could be followed up (I've copped that myself, and ended up leaving the forum concerned because the owner wouldn't boot the idiot out for it), although I would certainly at least pay the police a courtesy visit over it and find out exactly where you stand over the whole thing. Or get legal advice - surely you have free government legal assistance programs where you are?

To lodge a civil suit, you have to have proof as well as a case. It involves a lot of printing of the original comments, but as you don't have them it sounds like you'd be better off just letting the whole thing go and move on. In the case of the moron who tried to talk you into suicide that's a shame. Just do an entry on a blog or something about the person, and keep it no matter what. That's what I did with the idiot who told me to "jump off a bridge". Best way to get closure if you can't get it any other way.

Amanda Baggs's present diagnosis is actually Autism. A general DX (she has said so herself earlier in this thread) which may be for the best actually after what she's been through. If I recall she said she's probably PDD-NOS - which I've argued is the mid range of intelligence (average). Anyway, I think her physical issues will prevent the dropping of services where I live if she got an HFA DX.

On IQ's - it's already being used as part of the criteria, as an interpretation of the last part of the DSM-IV. The reason why it's misfiring is because those who do the diagnosis using IQ as a guide aren't psychologists (even psychiatrists aren't qualified to do proper IQ tests).

Finally - to everyone who is pro choice when it comes to a "cure". Sorry, but the instant that choice is given - it takes away the same choice to those who don't want it. Either we all reject it, or if it gets through somehow the pro cure crew will push the rest of us. Don't think it won't happen. NT's will INSIST that we all get cured because there are those like Fore Sam who are scared of us and our influence - and people who are less inclined to go off the deep end as Fore Sam does.

Freedom of choice is a fallacy - it doesn't really exist.

Oh, by the way;

There was little wrong with Inventor's post, and to be honest I found your response to be a rather harsh over reaction - given that the post was actually directed at Elan-I and not you.

Notwithstanding the fact that there isn't a cure. There's treatment, and the best - as Inventor rightly said - is love, understanding and support.

And Aspie Supremacy? Sorry - what you are seeing are people who are fighting against NT Supremacy. To seek equality, it is needed to pull that supremacist behaviour down a few notches. There are NT's who are constantly put us Aspies in the same box as LFA's just because we're on the Autistic Spectrum. Sue Rubin would have faced that, and she decided within herself she wasn't going to take it. Lucky for her she didn't face the sort of opposition (before any shouting back or whatnot) that certainly I have. If she had I'm sure she would have reacted the same way - and told people who were interfering to get out of her way. It doesn't matter how mature you appear to be, NT's see one thing out of place - they'll be onto you like a shot trying to pull you into their line.

No thank you. I don't play the NT game, and I'm not about to start. And don't underestimate NT's. They are not all angels. Most are devils although the majority don't even know it. The ones that aren't are few and far between and they are only that way because either they've been touched directly by ASD's within the family, or they have the capacity to be compassionate enough to be open to such things.

To be honest, I don't see much compassion in you, Joeker. It looks to me like you want us to fit in with the NT's. Is that true?

Look at this, I'm not even taking a stance on the cure debate (I have a stance, but who needs that when we have name calling and accusations to get out of the way first?). I'm just advocating a debate that does not revert to the equivalent of "Yo Mama" jokes being fired at one another in an apparently non-humorous manner.

The problem with this conversation is that there is a general lack of respect from most (note I said MOST) of the involved parties towards the "other side."

Establish the respect first. Establish the belief that even though the other person may be completely off-base (in YOUR mind), they are still a thinking human being with REASON for that belief that you should respect, even if you don't agree with it. Most often that reason is a result of personal experience.

Therefore, by criticizing the person, making disparaging remarks about their personalities and whatnot, you are not only insulting them, but their life experiences as well.

So someone has had a different life than you . . . we don't all live the same lives you know.

Would this approach stop the bickering? No, but it would make it a lot more hospitable and equal as people realize that they are discussing things with people as opposed to electronic posts.

am cannot see why a lot of them would even bother with aspies,have seen many on different forums who do not even know what AS is,let alone even class it under autism.

how does it take away the choice of another person,for a person to want a cure? it's a personal choice [if there ever is one] and cannot be chosen by another person,no one owns another person.
If a person is able enough to make their own choice,they are not going to go around them,there are human rights laws which allow diabetics for instance to not take their insulin,vegetarians are not forced to eat meat.

Am have a very poor quality of life as a result of autism and would like a partial 'cure' to remove the strongest traits and difficulties,although am not waiting for it,as cannot see how exactly it's going to happen-especially to existing auties and aspies,however,if a person wants a full cure,removing their autistic thinking and being as well, then that is their choice and it shouldn't be made by someone else,whether it's other autistics or the government.
Hardcore pro cure groups don't run the world,and forced cures on people [especially those who don't have severe traits] isn't something that will happen in this day and age.

Please read what I write and stop attempting to represent me.

I was diagnosed as PDD-NOS for insurance reasons only (this was really common in the mid-1990s, I'm not going into everything here, but it happened to Roy Grinker's daughter at the same time as me for similar reasons and he got into the sociology of diagnostics back then -- my parents were actually told orally that I was autistic, and an idiot savant, but that insurance would think that meant "hopeless" so they'd write down "PDD-NOS", please just get it right and stop trying to tell me what and who I am I'm totally sick of you doing this). I fit the criteria for autism and am diagnosed with autism for a reason. Please quit defining me it's getting to the point of intolerability and I can't keep correcting you, especially as I have done so probably about twenty times by now in various places. And you're totally wrong about PDD-NOS (see this post, read thoroughly, and quit inferring), it's just a grab-bag, is often used inaccurately (as it deliberately was in my case, which was common back then, and still happens a lot today) and like autism has nothing to do with intelligence.



HFA isn't a real dx anyway. I mean, it's given, but it's not part of the diagnostic codes and certainly not used by the state in giving out services. You have autism, Asperger, Rett, CDD, or PDD-NOS, those are the diagnoses that exist where I live and that's what will get you services. In order to get services you take a test that your staff rate you on what you are able to do. My staff put down what I was able to do and I got a score of 47 which is almost as low as you can get on the test, and that's how they do it. They don't do it by IQ, they do it by do you have a developmental disability, and then what can you or cannot you do.

As far as autism dx my parents and others who have known me since early childhood have gone through the autism criteria with doctors and in front of other professionals (including MIT professionals when I was asked to work with them) so many times over I'm not going to do it here, but it's happened, and please stop trying to squeeze me into your definitions of autism subtypes because it's getting pretty old and patronizing to boot that you don't just take my word for it or actually read my posts or anything, it's like you just say "I think she said" when I said something right in front of you yesterday that clarified everything and it would take you a few seconds to go back and look at it probably (unless I'm misestimating your abilities, which I might be, in which case I'm sorry for being rude, I'm just fed up with having to explain and utterly exhausted). I'm not "autistic after all I've been through", I'm just autistic, that's what was originally said to them out loud before most of "what I've been through" (it was practically the original direction that diagnostics took with me), and that's what another (relatively famous) autism professional urged my psychiatrist to put on paper. My psychiatrist and psychologist verified the diagnosis for SSI and an independent evaluator verified it for SSI again based on medical records obtained directly from doctors as well as stuff from my parents and from testing and interview of me. It was also verified for state services several times through similar methods. Like someone on one of the other threads said this is as verified as you get and I'm sick of people making up their own little stories about it. I've fit the criteria since I was a baby, otherwise they couldn't use the diagnosis because it isn't allowed to use it if you haven't fit it since you were under 3 or 4 or something. That means that they had to have proof from people other than me that I had delays or abnormal functioning or whatever the word is in various areas before that age and I did, and I also fit the criteria ongoing throughout childhood etc., I was just interpreted very differently than later and grew in different orders and ways than people want to expect.

And I'm sorry if I'm incoherent or rude. Really. I just don't know how to control it right now. My mind isn't fully back, having experienced an actual toxic gut-related reaction (which bore no resemblance to autism, and was pretty identical to delirium because that's what it was), and I just can't think well enough to keep correcting you so I'm just trying to ask you to stop, but I'm making frustration too visible and I can't figure out how to go back and erase it (yeah my brain is really messed up right now, yesterday I was still seeing people's heads disappear and stuff -- hospitals don't send you home well, they just send you home stable/not-too-delirious/not-about-to-die, and my body including my brain is totally trashed right now). I hope you and anyone else reading this will forgive me for any harshness.

First of all, I don't know what you mean about ignoring your post. I'm not on this board 24/7 and there are two threads under this topic. Lots to read. Forgive me if I slighted you, but come on! It's the internet, people.

Last, I never said all Kanners was regressive. Where did you get that? I don't think anybody in this entire thread said all Kanners was regressive. That's the first I heard of it and it's by you. Regressive Autism to me is only one form. Many parents experience developmental delays from jump street. So, I don't know where you got the all from.

If you don't believe your kid regressed, that's okay with me. You have your truth to live with and I have mine. At the end of the day that's all that matters. Not what you believe about my kid, but what you believe about your own. Peace.

Shelby, if you think I'm being a smart alec, hey, it's your choice. You said yourself that you don't pretend to be an expert. Good. Because you're not. And, you're definately not an expert on every child on this earth with Autism. My own included.

In my opinion, some kids regress. Some don't. That's not an expert opinion, but it's my own. You cannot lump every Autistic kid together and say that they all DO NOT regress, the same way you can't say they all DO. Autism is does not occur in every human being the same way and to say, "Something is not quite right with Jack," means nothing. As my above post says, some kids have delays from the start. But, there are those who don't. There are kids who exceed, then lose every ability they have to function. Autism is a complex disorder and the spectrum on "how, when, why" someone becomes Autistic is just as dynamic as the spectrum itself. You're an educator. You should know better.

Hope you feel better soon, anbuend.

Reminds me of the Huey Louis and the News song "I want a new Drug."

We'd all like a perfect day everyday.

Elan_i, I went to the other thread to post but it wouldn't let me. I wanted to reply to the above post by Member Zwerfbeertje's, so I'll do it here if that's okay.

I wanted to say that it is not the end of the discussion, but the beginning of something rather remarkable going on among young Autistic kids who are totally accepted and loved. There may not be a cure, but Autism is becoming treatable thanks to Early Intevention that produces life changing results in many kids. Nobody can say that they are cured, but some kids are losing their diagnosis based on the DSM-IV Criteria for Diagnosing Autism. They are shedding the behaviors, learning to communicate, and for all intents and purposes really thriving in mainstream environments. EI is changing the face of Autism and for those who think it's not treatable, think again. The degree and speed at which the kid progresses depends on various factors. But, for some parents, losing the diagnosis and seeing the symptoms reside so the kids can function is the next best thing to a cure. On my thread, "Did You Receive Treatment?" I mention some of the treatment methods that are helping Autistic and Asperger children thrive. Kids are getting all kinds of intervention, including Social Skills Therapy. It's all good.

So, there may not be a cure on the horizon, but there is treatment. It's here. It's now.

Interesting. I do know there are various treatment approaches that have varying levels of success for varying amounts of people, and have wanted to look into this more to become more educated about it. But for now, in doing this and the other thread, I was proceeding on the more general idea which I've developed from discussions with various people in medicine and science, which is that there is no universal treatment, but instead, varying treatments that have varying levels of success in varying amounts of people, and, the reports of effectiveness are anecdotal.

Anyway, I was trying to focus away from discussion about the varying treatments and the testimonials, and instead, stayed with a more general statement about the overall state of treatment, and the apparently largely psychological responses to the lack thereof. And I also didn't want to get into my own view (which is still quite undeveloped) about my speculations about whether many diagnosed with Aspergers and/or autism actually do not have these conditions but rather other conditions that have a similar presentation to autism/Aspergers, such as having been subjected to neglect and/or abuse of varying kinds and from varying people, including parents, other adult relatives, siblings, classmates, teachers, etc, and which could include neglect-to-care, hatred and disparagement, mockery, fright-causing, and other similar things. And, whether these children respond to intensive special education and other therapy because it provides them with very personal and intense care from wonderful people, and they finally respond to this care and interest and stimulation.

But anyway, I was trying to focus away from all of this, and instead focus on the general perspective about overall treatment, and the general view of many on wrongplanet and many others who are anti-cure and anti-major treatment, and by 'treatment' I'm conceiving of something that has a substantial impact on all core symptoms of autism and Aspergers, such that the person has a substantial increase in all core abilities, especially non-verbal communication, sensory abilities, and social abilities, which it appears is not available for adults in general. Donna Williams, for example, reports having immense improvement from a list of varying treatments, and she discusses and promotes these treatments in some of her books. Yet, while she has indeed improved, she still is extremely dysfunctional socially, and non-verbally, and has a very limited social life, and also appears to still experience rather significant sensory symptoms of varying kinds and varying degrees. Donna has reportedly come out of being non-verbal for quite some time (I'm not sure how many years in her early childhood), to in her late teens onward to becoming much more functional, but relative to her previous level of dysfunction. Again, she still has considerable impairments that greatly limit her in many ways. Put another way, she has had a degree of improvement in her core symptoms, but the level of improvement has stopped at a particular point, and a major treatment is such that it would cause a far greater level of improvement.

I myself don't consider special education, or cognitive therapy and strategies, and coping skills, and behavioral adaptations to be major treatments, any more than I consider, for neurotypicals, that regular education, parenting, and the regular learning that takes place among family, friends, etc, to be treatments.

I'm becoming more clear about why many with autism and Aspergers have an anti-cure position, and I consider their position to be much like the positions of many who have the different personality disorders -- most people with personality disorders vehemently argue against having any disorder, against any treatment, against being considered disordered, believe they are simply different, and so on. (This I believe is a major aspect of having a personality disorder, by definition. The person doesn't recognize it, doesn't seek treatment for it, and rejects it's diagnosis and treatment...most with personality disorders who seek medical attention do so for other reasons such as depression, anxiety, from the insistence of family, etc, and it is then that they are given the diagnosis, which they usually reject).

The Aspie positions I find most a sign of conceptual impoverishment, and a deficit of empathy, are the highly offensive objections to neurotypicals, such as that they are the ones that need to be cured, that the world would be better without them, that they are inferior, that their small talk activities and other interests are alien and lack value and a waste of time, that they are lower in evolutionary development, that auties and aspies are superior beings, etc. I find this the most obviously psychological response to the widespread discussion in medicine, science, etc, that autism and Aspergers are mental illnesses characterized by substantial and pervasive impairments in basic communicative, social, and behavioral abilities.

I think it would take a very humble and strong person to accept this diagnosis, accept efforts to treat this condition in a way that is agreeable to everyone, and, still, understand that we are valued not any less despite our disorder, and that having a disorder or illness or condition or whatever you want to call it, does not mean we are less human. Essentially no one in medicine or science thinks this, and for those in the public who do, they are themselves sick in their humanity. Responding to autism being considered a disorder and the subject of treatment and cure development by demonizing neurotypicals is unfortunate, and, only worsens things for those who do this, in the sense of adding to an adverse psychological make up, and being considered by others as being treatment-resistant, avoident, fearful, unaware, etc.