Anti-cure Cowardice?

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Oh, honey, I have news for you...most neurological conditions are not reversible.

But you're right about children with autism manifesting earlier. In fact, when researchers studied video of children who supposed "deteriorated" at age two, the scientists found the vast majority exhibited signs of autism from birth. And let's face it, children aren't usually very functional at two. I have a sneaking suspicion that "regressive" autism is just the docs and the parents realizing the kid isn't progressing as normal, and lack of speech at two becomes a concern. I wonder how much of this is due to environment and pressure on the child to speak, and the child responding by withdrawing further.

Some news--it seems that there is a further regression in middle age. EIther that or us oldies don't care any more, and we let it all hang out.

Oh, yeah. What Inventor said in spades.

Metta, Rjaye

I feel I must counter your false and somewhat demeaning accusations.

1. Yes there are effective treatments which can touch on the core symptoms and issues in Autism Spectrom Disorders. No medication can and they will take a long time, effective treatment is not a 'quick fix' but it does exist. (Those higher up on the spectrom acutually can respond very well to treatment.) Early Intensive Behavior Modification and Applied Behavior Analysis are highly effective treatments for most on the autism spectrom; these are the best and most effective. Cognitive Behavioral Therapy is particularly effective for aspies. The best treatment programs mix different treatments and individualize them to the person thus targeting their specific problems helping them to adjust to the normal world to liead full lives. No, treatmeant will not make aspies and auties "normal" but they can help adjust and improve. Besides no one is exactly the same and diversity is supposed to be a good thing.

2. An aspie/autie would not know what its like if they were an NT; however, an NT wouldn't know what it would be like to have an ASD either. Treatments and cures are not based on whether a person has ever been whitout whatever is being treated or cured. They are about helping the patient or making them better if they're sick. (If someone is born severely ill, you would treat them just like you would treat a sick person whose previously been healthy.) Its not the previouse condition that matters, its the benefit to the individual which matters in concerns of treatment and cures. Autism is not a disease, and should not be put in the same mindset as diseases, unfortunatly for many it is. Those on the spectrum CAN adjust to the world (they can marry, have children, led productive and sucessful lives), even though it can be difficult but life is difficult. So where is the benefit of a cure if the main argument for one is so auties and aspies and lead full lives, considering its possible without a cure?

3. You say that it is cowardly to not want a cure, or to not think one would be best for "many or most with autism." Yet many people on the autism spectrom can learn to work and live in the normal world just fine, and may not have a problem with being autistic. Thus, one can logically surmise that a cure would not be necessary for them, and so loses its beneficiality for them. An autistic person has more to them than autism, but autism does effect who they are, it's ignorant to assume otherwise. Just as ignorant is the assumption that being ok with that part of your live means your a coward.
Is not being afraid of being different cowardly? Does accepting all of one's self imply a lack of courage? Is faceing difficulty more cowardly than looking for an easy way out? I think your concept of cowardice is severly off.
As for fear of a "major treatment" which by your definition would be a highly effective one, I have yet to meet an aspie/autie who was opposed to recieving effective treatments that helped them to adjust and improve. Good, highly effective, treatments exsist and are used. They help us to deal with the problems caused by our disorder and use the strengths that come with it. With them we can live just fine in the normal world. Some high functioning aspies and auties can learn to adjust without extensive amounts of outside treatment (this would also go against your 'a cure would be best for most senerio' a bit).
Some would say that it is more cowardly to want a cure instead of learning how to deal with the issues. Or that it is neurotypicals who can not accept the differences of aspies and auties and thus try and push this idea of a cure on them as a type of "cowardice."

4. Again it is not "treatment" most reject as there are effective treatments and many take advantage of thhose if they can, it is the view that we must/need/have to be "cured" that is rejected. You say that we are anti-social and aggressive and because we are afraid and cowardly resort to "personally demeaning, threatening, mocking, and libeling people and organizations who are devoted to the possibility of autism treatment and/or cure." Again those of us who oppose cure do not oppose treatment nor those who want better treatments. We do not like when people or organization say that there has to be a cure or that everyone with autism must be cure, and make references to how horrible and insidiateing autism is (indeed those who make these statements are making demeaning comments toward us, whether intentional or not). The worst labelling is on those who claim a cure, which doesn't exsit, and targets those on the spectrom and/or their parents to try and make money on peoples desperations, or those who try to force their want of a cure on everyone else. Call it "anti-social psychological aggression" if you want but I don't think its wrong to call these people out, who think they have the right to take advantage of someone or dictate what someone else needs to believe. I also do not find 'curbie' to be that hurtful of a label when you put it into context of what they imply we are with phrases like "insidious condition" and such. Not to mention those who plain out call us freaks, weriodos, psychos, losers, ret*ds, morons, idiots, inbiciles and so forth. Why is it ok to try to force everyone to believe that autism should be cured, but its not ok to say autism doesn't need to be cured?

5. Depraved indifference to human life is to recklessly endanger a person's life leading to serious injury or death. As ASDs do not cause severe injury or death, not provideing a theroretical "cure" or "major treatment" would not fall under this category. Thus your entire point here is invalid.

6. Its not fear but logic that follows/supports the concept that a cure, if possible, would drastically change the "personhood" (as you say) or personality. This is because the core symptoms of autism affect the way one processes, understands and sees the world, affect personality type and these core symptoms involve social interaction, communication, and behavior. The disorders are brain based (Major distinctions: Autism- weak left strong right hemisphere; AS- weak right strong left hemisphere. Along with other brain structure and function abnormalities, a main one being in the limbic system), and if you change the brain, you change the person. Your analogy is further off as the core deficites are pscho-behavioral not physical, thus a cure would not provide additional/increase physical abilities. Further these two attributes are not affected the same way so a hypothetical outcome based on comparison between them is invalid.
Your blind person analogy is not quite accurate. There is a lot more to sight than just the ability to see. Those who are born blind or become blind very early in life and live blind of a long period of time do not develope the processes in the brain to process sight effectively. There was a case in a psych textbooks where a man who went blind as a baby lived blind into his twenties when a surgery was able to restore his sight. The problem was his brain wasn't addapted to sight and he couldn't understand what he saw, he couldn't use sight as an accurate sense, still needed a guide dog three years after regaining his sight (when the art was written), could get around better when he was blind, and since getting his sight back suffered from severe headaches because of the sensory overload.

I reject the idea of a cure for several reasons, but see nothing wrong with improving treatments. Some of the reasons I do not believe in or support the idea of a cure are as follows:
1. Cureing Autism is not a feasible concept given the nature and causes of the disorder itself. In simple form the main causes of Autism Spectrom Disorders are genetics, brain structure and brain function abnormalites. We do not have the means to alter a person genetic profile and brain to the point necessary to "cure" autism, it would be extremely dangerous to try, we don't even have the technology to identify all of the gliches (or gliche combinations) that can cause autism and the disorder(s) doesn't affect people uniformily.
2. A cure is not necessary as many on the spectrom can overcome the problems associated with it to lead adaquate lives. With effective treatment even more are able to do this and advancement/improvement in treatments should continue increase this rate.
3. Further, while there are difficulties and weaknesses inherent in the disorder, their are also strengths and even some of the persieved "problems" can be developed to aid the person. To eliminate the disorder would get rid of these strengths. Everyone has their weaknesses and strength and can adapt to them, auties and aspie included.
4. As autism is not deadly or causeing physical pain and discomfort, and most of the issues can be dealt with, without a cure, a cure is not an imparative need.
5. Given the nature of Autism a "cure" bespeaks a little too much of eugenics for my taste.
6. Autism is not so insidious that it must be stampt out like some kind of plauge. It can be worked with.
7. I think that more effective treatments could help even lower functioning individuals, though it will take time. Focusing on the illusive idea of a cure does not help them now, deflects funding and research from more feasible treatments, and unfortunatly breeds so-called cures which not only don't cure autism but are expensive and potentionally dangerous. Its a sad fact but it happens.

I don't like some of the organizations promoting this idea of a cure because they oftan push the idea to far: many claim a cure is necessary for everyone on the spectrum leaveing no choice to the individual, some make claims not based on evidence and advocate drastic measures which can have serious consiquences, some will not allow the opposite side a voice and deny/ignore any evidence that goes against their claims (there are documented cases of this), some support treatments which are non-proven, ineffective and/or dangerous.

Personally, I do not want nor need to be cured. I can accept my disorders, overcome my difficulties and utilize my strengths to live my life as I see fit. I am doing well; my struggles have made me a stronger person. This is my life. I should have the right to live as I see fit and chose how I will deal with my disorders based on what is best for me even if that means not wanting a cure.

Rejay, your description of Regressive Autistics does not sound at all what truly happens to most kids. These kids not only develope normally, but many hit every single milestone ahead of time. They sit up, roll over, crawl, walk on or before target. They babble, point then start talking with age appropriate language. Then, it stops. When it stops, it's not a long, steady progression. It is almost overnight. They go from functioning at level or above age appropriate levels to a non verbal world of stimming, erratic behavior, closure.

You underestimate children at 2. Children are very functional at 2. Walk into a normal preschool and tell me what you see. You will see typical 2 year olds talking, doing puzzles, playing games with each other, socializing, attempting to sing their ABCs and 123s. Trust me. There is a difference between a regressive and some kid who's just developing slowly. The Wrights write a lot about their experiences because their grandchild regressed.

All kids have Well Baby appointments quite often during their first few years. The doctors chart development, growth and all other problems. When a child whose healthy and developing normally comes in one day and is totally unconscious of the world he's in and has lost every single word or ability he's acquired during his short time on earth, there's a problem. There's something wrong and the parents aren't the only ones who know it.

I don't pretend to be an expert but it is known that many autistic children developed normally, often they seem advanced. But they are still not 100% "normal" before the autism hits. I am a childcare worker who is an autie/aspie myself and I am seeing autism frequently. Because 2 year olds are so different, it is not obvious when one 2 year old is talking and one is not because that is quite normal. It is also not unusual for a 2 year old to just repeat words with no real meaning. But something is off...you will often see the other childcare workers saying things like "Something is not quite right with Jack." They often are advanced but something is missing. I don't believe children are "normal" and then suddenly struck down by autism.

Well stated, Darlene. Thank you for taking the time to address this so thoroughly.

I know, that's why I said in the future; I'm betting that a "cure" for autism will be a byproduct of a cure for another neurological disorder (MS for example); if the "damaged" portions of the brains can be restored to an undamaged state, the individual would be effectively normal then.

Sure, if you're a super-duper high-functioning individual who can work, form meaningful relationships, and do other "normal" things, a cure probably isn't for you because you're effectively "normal". There's many, many "aspies" out there who cannot work, who cannot form relationships (it's actually most); they want to (I don't know the statistics for this, but I do know that many wish to do "normal" things but they cannot because of their Asperger's). And then you have individuals with autism....

I'm not dxed as LFA. I had a dx of "low functioning" at one point in time and I don't know completely the details of why (it was after I had lost a number of abilities I previously had, but at that point I had more speech than I do now, and my formal dx was PDD-NOS (orally dxed as autistic -- insurance things)). I'm diagnosed at this point with autism and there's no functioning level given, which is as it should be (see Mottron et al.). In my records, sometimes "autism with associated movement disorder" (the movement disorder being the "physical issues" you describe, and being something that some autistic people develop in adolescence, including such well-known autism advocates as Jim Sinclair, who is himself the primary reason that the movement disorder was properly diagnosed -- he supplied information to me that was then passed on to my psychiatrist who recognized that the paper fit almost exactly the pattern of movement disorder he had observed from the beginning; with the understanding that "movement" extends to things beyond physical movement, see Donnellan/Leary or Leary/Hill for more information on that), or as "autism" and "CNS disorder NOS".

I don't believe in an LFA/HFA distinction. I do sometimes speak as someone who has been labeled low-functioning because I think many people can get that label for a whole variety of reasons, and I don't think that it's a matter of the label's accuracy, as much as what the label does to a person sociologically. In everyday life, people regard me as high or low functioning based mostly on whether they have seen me communicate or not, and/or on my life skills. And my life skills are pretty darn bad by now, well below the threshold that many people here set for these things (would not survive on my own in most situations, almost did not at one point). Many people who end up labeled LFA are labeled that specifically because they have more going on than just being autistic (and no, it's usually not an intellectual disability despite stereotypes), and some are labeled that way because they have this movement disorder in a more severe form from birth. Since I regard it as sociological I don't regard the distinction as having true diagnostic meaning the way you do and I don't appreciate when people apply a label of HFA or LFA to me as a diagnosis. I will say severely disabled because that takes into account my entire disability (which is based on several different things not just autism), but not severely autistic because I don't think we even know how to measure severity of autism yet.

I also don't agree with Sue Rubin because obviously people labeled LFA disagree with each other on the matter of cure as much as people labeled HFA or AS do. She has a point that some people really don't understand some things that some autistic people go through (I've experienced that on this board many times), but she can't claim that all people with a particular functioning label are going to agree with her because it's simply not true (take Sharisa Kochmeister for instance who I have met/spoken with and who like Sue Rubin types independently and has a genius-level IQ now after formerly being considered to have an IQ of 10 and requires near-total assistance due to autism and two different movement disorders... she doesn't want a cure either, does her opinion somehow not count because it's further from the expected "party line" for "LFAs"?).

(I just got home from the hospital for bowel/bladder obstruction and mild liver problems so have been unable to answer anything, but wanted to correct you about my diagnosis, am going through various things right now and replying before probably going to bed again.)

That's fine with me if you don't believe children are normal then struck down with Autism. I'm not after what you believe. I think I know a little more about this than you do. I don't just see it, I've lived. I know other parents of regressive Autistics who live it as well.

I don't know where you got your credentials from, but it is totally obvious when kids are talking and communicating. Plus, you're talking to a parent of multiple kids and many other parents out there who have regressive children have multiple kids. They've been down the parenting road and don't need books or the internet to pinpoint regression or decipher that something was missing all along.

Most kids who regress show no signs of Autism or any other disorder. Sometimes the parents say the kid had speech delay, but the kid did have words and some age-appropriate communication. Like pointing and gestures. And, NT kids can have speech delay as well. Sometimes, an Autistic kid early on can have more words than an NT kid. But, it's not just speech when it comes to regressives. What makes regressives different and baffling is that many don't have the delay at all. They can go from being talkative, social, gregarious, laughing, playing, potty trained, dynamic, communiting and lose all of those skills at the blink of an eye. Some lose physical attributes like feeding themselves and holding an object in their hands. They lose these abilities without any medical, psychological, cognitive or learning impairment that is visible to the naked eye or notable to doctors or the parents. One could argue that the disorder was there and laying dormant, then something environmental triggered it. That is a theory that's very popular among today. But, before that trigger goes off, there's no sign in most cases that there's a problem. It's the trigger (whatever it may be) that shuts down the child.

What would make a child lose all of that in an instant other than some sort of brain trauma? In adults, the only thing that would even compare to what these kids experience is a stroke or brain injury. Even Alzheimer's victims take a long time to lose their faculties, but regressive childhood Autistics lose them almost overnight. In our case, you could see the decline in days and eventually, it was almost back to the fetal stage.

The "something's missing" or "something's not quite right" makes no sense. That could be said about any child, even NT children depending on what you're looking for. So, if you ever come up with a specific pathology of what that your "something missing" is, please let me know. And, let the doctors who've treated regressives and all their parents know as well.

I'll quote a low IQ Bi polar friend of mine. "Everybodies different."

We AS NEED the NTs to Exist as do they us. Everyone fills out a role.

I think AS invents things and the NTs abuse it. I could NEVER drive, order at a drive thru, listen to the raido all at the same time. NTs do.

So wer'e not good at multitasking. Remember the old "jack of all trades master of none " thing? I would prefer to be a master in a few and oblivious to the rest. That makes for me a special intrest.

Society , every one democratic to facist, NEEDS people to go along with group think. The advancement of that society needs AS to introduce new ideas.

NewportBeachDude wrote:

That's an interesting point, but it also reminds me that eye witnesses are also the least reliable. A radical change like that suggests a trigger, such as a body system "coming online" at that age. If the child has some abnormality that begins producing the wrong kind or protein in the brain, or one that is mis-folded as many prions are, the change could be caused by that. If that's the case, it's going to take a long time to discover it.. just as it would if this were a prion caused problem. The only way it can be diagnosed is post-mortem. If the changes aren't "grossly" detectable my MRI or other advanced imaging equipment the brain would need to be analyzed quite minutely to detect anything out of the ordinary. I'm not a neurobiologist, but I try to keep up on at least the highlights in a number of different fields. This is all speculation on my part, but I could easily see where the condition could be "natural" as in caused by the genetic structure, yet appear to "come from nowhere". One week a happy, growing child, the next a staring unresponsive child... Whatever the ultimate cause, it's heartbreaking.

as for the cowerdace of anti cure, I have never sawn a leg off myself and I don't think I am a coward for not trying it this afternoon.

Of course you are. Why are you afraid of being an amputee? How do you know that's not a better way to be? </sarcasm>

DeaconBlues wrote:

Well, you'd get the good parking spaces at the mall....

</doubledog sarcasm>

Dave, those can be dangerous words, dude. One reason why so many Asperger and Autistic kids go undiagnosed is because people think what comes out of the mouths of parents is unreliable. Doctors, teachers, professionals question and doubt what they're saying and the kids lose out on time that they could be in intervention. Something to think about.

Sorry if my last post was strong. Didn't mean to sound hard. My wife is reading "The Autism Sourcebook." It's written by the mother of a regressive Autistic. Here's what she says and this account has been noted thousands and thousands of times by other parents. I'd never seen this passage until my wife showed me after my post this morning (above). We could have written this ourselves. It's long so I'll paraphrase. Quote:

"In the first seventeen months of life, Jake hit every developmental milestone: he crawled, he walked, and he talked. He was within the age-appropriate weight and height percentiles. by all accounts, he was a typical child. And then, Franklin and I watched as our once active and talkative toddler developed into a lethargic and silent little boy. It was as if, one by one, all of the circuit breakers in his brain were clicking off.

Something was affecting Jake's overall development. His coordination was off. He couldn't keep his balance while running or going down the slide. His behavior changed. Jake no longer showed any interest in playing with other children, he hardly even played with toys. Apart from turning light switches on and off opening and closing all the doors in the house, his favorite activity was lying on the floor and staring. he also began to have full-blown, horrific tantrums that looked and sounded like nothing I'd ever seen, comple with shrieking and sobbing that cause him to hyperventilate. "

It goes on and on to describe his decline and changes. This is what I'm talking about. Okay, that's my point for now. Sorry for typos.

Ah the bolded part explains where I got the idea of the LFA DX! Thanks for the correction, Anbuend! And now that I think of it, in your case it probably IS better to have a general Autism DX rather than a specific part of the Spectrum - what with the issues you have that I was alluding to.

Sorry to read about your health problems! Get well soon!

LMAO NewportBeachDude... with regard to eyewitnesses, ask a cop, particularly detective grade and up, or a prosecuting attorney. Eyewitnesses are notoriously unreliable, because memory is so fluid. Interestingly, Aspie's seem to have more accurate recall "on average" than NT's. A large number of us seem to have photographic or near photographic memories, but they do fade with time, and age. Unfortunately.