Supposedly there is an experimental cure for autism?!?
Tonight, while I was preparing to eat, my dad told me that he read an article in the Wall Street Journal today that said there was a drug to help cure Autism. He told me that the article said that it was supposed to go in and "fix" chromosomes and make the person "normal".
He told me it was in an experimental state right now, and that if it reached FDA approval, he wanted me to try it out. I told him that my Asperger's is a part of me, something that cannot be removed, and that I would not want to be "normal" (or NT). Furthermore, Ihe said that there were some "problematic..." (I didn't hear the rest).
I am not sure what to make of this, have any of you heard of this so-called "miracle drug"?
Nope, haven't heard of it. It can't be any worse than ADHD medication.
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Your dad was probably talking about gene therapy for Rett syndrome. Rett's is a neurodevelopmental disorder with autism as a main feature (much like Down syndrome is a developmental disorder with mental retardation as the main feature). It's listed with the pervasive developmental disorders and considered a kind of autism; but it is very rare.
This is the only thing I think it could possibly be, because we don't know the genes for any other kind of autism other than Rett's.
The study your dad might've read about is probably the study they did on mice with an analogue of Rett's; the mice were created in a way that let the MECP2 genes be fixed in adult mice. It wouldn't have been possible if they hadn't been designed to have the MECP2 reactivated; regular Rett's mice wouldn't have responded to the treatment. The point of the study, though, was to show that if the MECP2 gene were reactivated, some of the symptoms might reverse themselves. This is exactly what happened; the mice regained some voluntary movement (a hallmark of Rett's is the loss of the use of the hands for purposeful movement; it is usually replaced with stereotypy).
So, most likely they have been doing more in this same vein with Rett's mice; and some other researcher has found out more about the situation.
I doubt they found anything for gene therapy for autism proper, since we don't know the genes for autism yet!
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Supposedly they cured her with stem cells. If somene ever tells me I should try out a BS claim for a cure, I'll tell them to go f**k themselves. The only way we will elimiante autism is to detect the genes that cause it (if there even are any) and abort the babies who have the detected genes. Same thing we do to kids with Down Syndrome. Not everyone who knows they are going to have a child with Down Syndrome does abort them but then Down Syndrome dosen't have the stigma that autism does. Is it because people with Down Snydrome are more friendly than an autistic person who's all standoffish?
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I'm not weird, you're just too normal.
So say they made a "cure". If it works by "fixing" genes then maybe its an engineered retrovirus? If so that alone is incredibly dangerous.
Getting past that the developmental issues are wired into the brain so my guess is it would work only before a certain age, long before the brain stops developing.
I can understand that for some people a cure is the only option. If you had a child that would never be able to look after them self, even to the point of being unable to do grocery shopping, cook or do washing, a cure would be extremely helpful to that person's quality of life. However most ASD people are not like that. If a "cure" is made it should only be used if without it that person will not have an acceptable quality of life.
I agree.
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I don't feel short changed, at all. I've lived my first 34 years, to the fullest. I'm just afraid that if there was a cure, that everybody on the spectrum would be forced to take it, whether they want to be cured, or not. That's my biggest fear, right now.
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I think if there is a somewhat cure of autism it would be awesome for those who want to be cured of it. For those who don't they can just ignore it simple as that.
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I totally agree. What is a good solution for me personally is not necessarily a good solution for all other people.
Cockney Rebel, you bring up a really good point. If there were a cure, would people expect ALL Aspies to take it? And we all know how fond society is of forcing people to do things without actually calling it "forcing." I am so very happy that you have found a way to "live your life to the fullest." It gives me hope. Right now, whenever I try to do that, it's like I'm driving a car full-speed into a concrete wall. Hmmm...I think I will start a thread asking for stories from people with AS who are contented with their lives and with who they are.
By the way, if the world in general were more accepting of people who are "different," perhaps I wouldn't feel so cheated, I wouldn't "suffer" from AS, and I wouldn't want to be cured. In my case, anyway, acceptance would make a cure irrelevant.
No one can force me to take something I don't want too. If they do there is going to be trouble. I think a "cure" in adults would be useless unless they can come up with a way to change personailty. Years of having autism has shaped my personailty into what it is today. When someone tries to get me to stop having special intrests, there is going to be war.
Do they see themselves as lacking a quailty of life or do their characters say that because they see them as a "burden"?
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I'm not weird, you're just too normal.
Supposedly they cured her with stem cells. If somene ever tells me I should try out a BS claim for a cure, I'll tell them to go f**k themselves. The only way we will elimiante autism is to detect the genes that cause it (if there even are any) and abort the babies who have the detected genes. Same thing we do to kids with Down Syndrome. Not everyone who knows they are going to have a child with Down Syndrome does abort them but then Down Syndrome dosen't have the stigma that autism does. Is it because people with Down Snydrome are more friendly than an autistic person who's all standoffish?
I STILL say this is NOT autism, it is CDD!! !! ! After all, if this isn't CDD, then why does it fit CDD and not autism? They figure she couldn't talk(AFTER she could), and that she was reclusive(Wouldn't YOU be if you couldn't communicate and were frustrated?), and so it is autism. I contend that it is CDD which is easily identified by a regression around 2 and LEADS to autism LIKE symptoms.
Why don't we say 50% of men have alopecia, because male pattern baldness looks a little similar, or that most women have a bleeding disorder? It would make as much sense.
Frankly, I don't believe in stem cells, in the way they are presented. And there IS the idea of a growthspurt, and placebo effect that can come in play. The treatment can give them hope, so they give more attention to progress which means the child is more likely to succeed, etc... ALSO, she may have merely lost access to some things that, when triggered, will make her appear to learn FAR faster than normal, when it is simply recall of information she learned earlier at a normal rate.
And here I thought it was actually going to remotely involve science.
People have seen this kind of improvement after putting detoxifying foot pads on their kids... In other words: This is anecdotal; they have no evidence that the treatment did a thing. Autistic people are known to learn in jumps and starts. My dad, for example, learned to speak suddenly, in full sentences, at age four. Who's to say this girl is any different?
Correlation/Causation, people. It's not optional.
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