How would a cure work?
I see that among the autism community, there are those who oppose the idea of a cure for autism, while there are others who support it. What I don't understand is how this cure is supposed to work. Whenever I think of "curing" autism, I picture a doctor injecting an autistic patient with something, and then watching as that patient (over the course of, say, a few months) goes from being an autistic weirdo to a neurotypical person, slowly shedding and losing all of the qualities that made him/her autistic like their sensitivities to certain sensations.
So, could someone "in the know" help me understand this?
CockneyRebel
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The most realistic idea is not actually curing the individual of autism, but curing the gene pool of autistic genetics. This would be done through pre-natal testing and abortion, or genetic counseling in families whose DNA shows the relevant genes, or selection of embryos, eggs, or sperm to produce non-autistic offspring.
Next most realistic is gene therapy. This would have to be done during the pre-natal period, probably in the first few months of development, before the brain begins creating large-scale structure. Gene therapy would change the embryo's DNA, probably using a virus, to be non-autistic, and build a non-autistic brain. One assumes that gene therapy would change whatever critical physiological changes make someone autistic rather than not.
A drug might be created that would change the way the brain is built, by pre-empting whatever effect the DNA has on the structure of the brain. However, this would also have a full ("cure"-like) effect only during the prenatal period. After that, you would still end up with autism. The vast majority of your brain's maturation takes place before you are born; most of the rest, by two.
Note that because presence or absence of autism is strongly predictable by family history, but severity of autism is not, we would have to extinguish not just profound autism but HFA and Asperger's as well.
To change the structure of a mature brain to be non-autistic would cause such widespread changes that it is unrealistic unless the side effect of losing all memory and non-genetic personality were deemed acceptable. It is also something that will be impossible, probably, for another few hundred years. To change the brain at this basic level would require technology that would also permit, among other things, the ability to literally create "designer brains"--want a genius? want an artist? Let's create one...
So, how does a cure work?
Answer: It doesn't.
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I saw a documentary on Discovery Channel called "Visions of the Future" with Michio Kaku where they said that with the current technology doctors can't perform gene therapy to diseases that involve a combination of multiple genes working together. The said one exemple of those diaseses was cancer. But they also said scientists are working on procedures that will allow them in the future to apply gene teraphy to diseases that involve a combination of multiple genes.
Whatever, I think NT's are going to get their "butts bitten off"/I know corny & somewhat rude for messing with nature. Autism has possibly been around forever or a long time (read "Autism Explaining the Enigma" by Uta Frith). I think consequences of messing with nature will be Residence Evil type of stuff (they used to lobotomize people b4/don't know if they still do/similar deal) or doing something else to destroy our essences (if we are lucky & they do it we will all be made/born immortal (maybe vamps)).
Yeah, right I doubt the immortality in exchange for autism thing! I'll stay as I am, & that is how you (anyone & everyone) will have to take me! ![]()
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MONKEY
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I don't think a cure could be invented until brain transplants are invented, which I doubt will happen either. I mean, it seems a bit unrealistic to think of someone taking a drug and suddenly their brain starts changing. The only way people can be cured is by prevention, like the pre-natal testing and stuff which I hope doesn't happen, because people already abort downs syndrome babies which I think is sad because people with downs syndrome can lead full and happy lives, same with autistic people no matter if they're profound or very mild.
If a cure does end up being invented I wouldn't take it, I'm alright as I am but if anyone else did I'd respect their desicion, my view is balanced.
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From what I've been studying, there are two camps. One is the medical community and the other is parents of autistic children. Science supports neurodiversity, i.e. acceptance of brain differences. Doctors have studied the effects of immunizations and concluded that they are not the cause. Science has concluded that autism is genetic. Parents have concluded that there is a predisposition to some children in which immunizations have "pulled the trigger" so to speak and caused their predisposed children (the loaded gun, using this analogy) which resulted in their child's autism. These parents conclude that pediatricians have not kept enough data on children with immunizations over the years to make a conclusive study. Parents also wish that the medical community will recognize that, although mercury has been removed as a preservative in immunizations that doctors pretest young children for the amount of immunization given. Parents no longer want a "one size fits all" approach to innoculations. Some children will become autistic after the immunizations, is their observation. Pretesting and changing the dosage and/or staggering the required large number of immunizations will also help, is their understanding. This same camp of parents have also found improvements, a cure, to their child's autism through a change in diet (no barley, wheat and can't remember the third one in which a protein is indigestible) and no dairy. The parents can see a change in behaviors, a clarity of thinking that results as well as cure with one on one ABA and social skills therapy along with diet changes. The sad part to all of this is some parents are not giving their children any immunizations out of fear. And the parents aren't believing the scientists. I can't imagine why scientists would tell anything but the truth. What a controversy. I'm an NT teacher with an incoming HFA student who is studying, learning, reading, interviewing, in the hopes of becoming more educated and better prepared to reach and teach the unique needs of my new student. So far, I am gaining so much insight into this world through this website. What I have noticed most is how kind all of you are to each other as you ask questions and answer each other, honestly and with compassion. I was told that HFA's have trouble with empathy - I now know that there may be trouble communicating in terms NT's can understand, but HFA's have great empathy in my observation on this website.
fiddlerpianist
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I also suspect that there is a certain amount of denial in these parents. They refuse to acknowledge that they, in fact, might be autistic, too. And since they have vilified the condition ("Parents Against Autism! Defeat Autism Now!"), if they ever did acknowledge the traits in themselves, they would in effect be extreme hypocrites. So if they can blame it on something that is easy to blame (food, the environment, vaccines, white noise, rain, the list is almost endless), it makes them feel better.
Not all parents, of course. There are many wonderful, understanding parents out there who truly understand that they cannot cure their children of themselves.
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CMaximus
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Somehow my intuition tells me any kind of cure we could concoct would be a lot worse than the disease. As in: fooling around with the developing zygote or fetus would just put it at risk for any number of other developmental abnormalities, some of which could be legitimately lethal.
Also, making a fully-developed brain non-autistic would mean undoing all of their neurological development, which would probably result in a vegetative state.
And the pick-and-choose screening/abort method is kind of... strange. Best bet is to adopt. The world is already over-populated, anyway.
I also suspect that there is a certain amount of denial in these parents. They refuse to acknowledge that they, in fact, might be autistic, too. And since they have vilified the condition ("Parents Against Autism! Defeat Autism Now!"), if they ever did acknowledge the traits in themselves, they would in effect be extreme hypocrites. So if they can blame it on something that is easy to blame (food, the environment, vaccines, white noise, rain, the list is almost endless), it makes them feel better.
Not all parents, of course. There are many wonderful, understanding parents out there who truly understand that they cannot cure their children of themselves.
The split in parents, from what I've seen, is between parents whose kids have LFA and parents whose kids have HFA or Aspergers. This isn't absolute, but it's a tendency I've seen. It's fairly easy to see elements of yourself and your spouse when your kid is at the quirky-but-functional end of the spectrum. I can see traits that are like myself and like my husband and like her various aunts and uncles in my daughter. They are writ large in her and cause her problems that we didn't have because of severity. But it's so much easier to see that when your kid is verbal and able to make it through the world, albeit it with supports we never had or needed. It's easy to embrace neurodiversity when your child is like that. And easy to see it as genetic.
But I can see how parents of children who are nonverbal, not toilet trainable and terrifyingly self-injuring would have a much harder time seeing elements of themselves in their child and therefore embrace an enviromental explanation and become a so called "curebie". It's easy enough for me to say "how dare they want a cure!" My daughter uses the toilet, talks to us, and can go out and about in public without screeching. If none of those things were true, I might wind up in the enviromental cause/curebie camp.
As I read through the various threads, there are posts of people recounting their own or their relatives' growth from very disabled child to adult who has made staggering strides and accomplishments. (I just read a thread of somebody's neice who went from 6 year old who pooped on the carpet to becoming a physical therapist or something like that.) Those are stories that thrill me to the core, but you sure won't hear them from any doctor. Doctors have a way of painting the gloomiest picture humanly possible in the name of "not giving false hope". So parents leave the doctors' offices with tales of group homes spinning in their heads (since we will tend to die before our children) and terrifying thoughts of helpless middle aged auties at the mercy of whoever got hired by a group home because their parents have died of old age. Nobody here is posting from a group home or an instiution (that I know of) so it's not really the foregone conclusion that doctors make it out to be. But hearing about the atrocities of group homes and institutions can make a curebie out of parents out of pure fear at what will happen to their kids in middle age when their parents can no longer care for them.
If you can look at your child and be confident that they will not be at the mercy of somebody hired by a group home when they are middle aged and you are dead, neurodiversity seems like a fine idea. If not, cure seems like a better idea. So that's the split I've seen in parents.
KingdomOfRats
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Janissy,
am a full residential care user [lifetime placement],and it is true in many places the hell that goes on in them,the UK seems to be a lot stricter in what they can get away with [as well as having csci visits],but they still get away with so much unless the residents have advocates and are able to communicate what is going on to them.
any abuse is commonly blamed on the resident under 'challenging behavior',eg,'they were defending themselves against the service user',abuse they watch but ignore from resident to resident is ignored and forgotten by them-but not all homes are like that,parents need to really look into the organisation first before thinking of the home.
As for other users,am can remember quite a few others on here being in-or having been in residential or group home care,both auties and aspies.
Through own experience,am pro cure but not curbie,-pro choice-not forced on anyone,and family,carers,appointees, advocates,specialists etc should have the input to choice for their child that is unable to do it themselves.
Am can see any sort of cure like thing being through better medications rather than what is usually seen as a cure [something that wipes away something completely],the option to lighten the traits and difficulties in this way should at least be there for choice for those who have a very poor quality of life through their autism.
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KingdomofRats thank you for writing that. (Guess I was wrong about my assumption nobody was posting from residential care. I'm actually delighted to be wrong about that.) It sounds like residential care isn't as bad as I thought. So much of what I know about it comes from news reports. And those news reports tend to be about the atrocities. Just google "Judge Rotenberg Center" and you'll see what I mean. Anyway, it's those news reports which are screaming in many parents' brains when they say, "I wish I could make my child not be autistic". But your post gives a calmer and more optimistic perspective. And like you point out, the word "cure" is rather broad and can cover a whole lot of ground, from total annihilation (abortion of fetuses carrying a certain gene) to merely finding ways to lighten certain traits that make life hard, and that this should be offered as a choice and not forced.
I honestly think the solution to that is not to erase autism, but to erase abuse. You can't get rid of all abuse, of course, in institutions or out of them; but I am sure there is a great deal more now than there could be.
If it weren't a horrible thought to need help to live; if it didn't make you vulnerable like that; then there wouldn't be so much fear involved with it. Parents of low-functioning kids wouldn't have to wonder, "What if I die first?" because their kids could have a good life without them.
That's the best goal, in my opinion. Get rid of every autistic person in the world, and you will still have disabled people. You'll always have them; in fact, most people become disabled during their senior years. Disabled people will still have to live with the crappy system we have today, even if autism doesn't exist; and that has got to be changed.
Finding acceptance for autism will have a better effect, and will happen much sooner, than finding a cure for autism.
Re. better medications: These are treatments for autism, not a cure. The brain stays the same--and most likely, the increase in ability you see on the right meds tends to be the result of removing road-blocks to using the potention that was already there. You see this today for people whose anxiety responds to antidepressants: Suddenly they are functioning better, as though they had less autism; but they have the same amount--it's just that the hindrance of anxiety has been partly removed.
I would much prefer that research grants go to people who are investigating autistic cognition, though. If we can figure out how autistics learn best, then we will be able to teach the kids properly, and help adults find work, and devise new therapies that will help autistic people learn to take care of themselves and connect with others--without resorting to ABA, or as I prefer to call it, dog-training for humans.
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We don't know how a cure would work, because we don't know what causes Autism. If it's extreme emotions, it would reduce the emotions. If it's an extreme male brain, it would feminise the brain. Etc. Etc.
For the extramely severe cases, first thing would be to establish communication. Then they can see whether they want a 'cure'. It's not a choice that should be forced on someone.
