why we must be weary of autism speaks

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unfortunatley most advocacy organizations dont realy speak for anyone.they speak for hypothetical concepts that might be true,based on the validity of certain facts.however the jury is still out on many facts

the dangerous thing about the way that autism speaks wants to make a cure is that it shows autism as a terrible disease, that means if you don't want a cure you would be forced into it by people who think they would be doing you a service, like schools, employers, and social workers. that would be a bad thing. i would say i would be fine with a cure if i was assured that it wouldn't be forced on me. and also if there was a way to cure autism there would also have to be a way for dissatisfied NTs to become autistic.

Disability is terrible. The goal of cure is to get rid of disability, even though not all with autism are disabled. So those on the spectrum who aren't disabled don't even need a cure.


Nobody is going to force cure on you. I doubt you would admit that though, as you don't want to stop complaining of cure.

I think the real problem with a "cure" is parents giving it to their children when the children can't make the decision for themselves. Anything they do, must be able to be undone if done to a child or someone not making the decision for themselves.

but the point is that it will be forced. people will think it is strange if i am not cured because they think all autism is a disability. i'm ok with low functioning people being pictured, but you have to keep things even and make a video about how high functioning people without much disability would be an asset to the workplace if they had the accommodations they needed. but autism speaks hasn't done that, which worries me. it would be ok also if they explicitly stated that they were "kanners speaks" or "low functioning autism speaks", but they are autism speaks, and that implies that they represent the whole spectrum, which they do not.

+1 brainwashing is also a big issue. they need to know all sides of the story.

A cure ?

What do you think a cure would entail for an adult on the autism spectrum ? Would you forget your other self, your spectrum self ? Would the goal be to make you Neurotypical or to integrate both selves??? Would only a certain group on the spectrum qualify i.e those closer to being Neurotypical, anyway ? Could the ASD mind accept the social mind of a Neurotypical and all it's complexities or reject it out right ? What would be the side effect of an Adult ASD cure ? Schizophrenia, Dis-associative Identity Disorder.........

TheSunAlsoRises

Last edited by TheSunAlsoRises on 09 Feb 2012, 11:12 pm, edited 1 time in total.

Executive functioning that's not completely dysfunctional. Being able to start tasks and work on those that are genuinely important, as opposed to being enslaved by my obsessive special interest of the day/week/month. Being able to deal with a ringing phone, incoming IM, email, and ambient noise at the office. Being able to cook dinner while watching TV, without getting a phone call and forgetting about the food on the stove until the smoke alarm goes off.

Everything else is negotiable. Improved sociability might be nice, but it's at the bottom of the 'to do' list, right after "put crown molding in the bathroom" and "scrub the disgusting brown stuff from the bottom of the garbage cans outside".

a cure could cause schizophrenia,very good point.i think maybe why that there are less girls than boys with autism is that the same intense world that causes autism in boys may cause a borderline personality in women.another possibility is that a cure could also cure schizophrenia to.both deal with intense levels of reactivity,with autism its more sensual with schizophrenia its more emotional

Personally, for aspies I don't think the cure is anything but social. Like any other organism, we are evolving and have a right to do so. We can't be expected to change ourselves to follow the NT evopath. With a more full understanding of our phenotype it might be beneficial for us to self select the independently evolved trait/gene of another as time goes by to assist in our evolution, but anything mandatory would be a definite genocide. It would certainly benefit us however to have a class on neurotypical interaction and a place in society as a protected evolutionary group and/or minority status as our numbers are sufficiently small.

As for auties, they also have a right to evolve, but are they evolving into us, or do they have their own path?

You are a minor, so it wouldn't be forced on you unless your parents saw it as a serious enough problem in you, that required medical attention.

No worries, you'll be 18 in a couple of years, and those decisions will be your own.

You have Aspergers; there is a zero percent chance that a cure is going to be found for your Aspergers between now and the time you turn 18. Scientists have no idea what causes Aspergers, and the overwhelming majority of research has been associated with individuals with Autism Disorder not Aspergers.

Recently, per cited link, below from Wiki, abnormal brain growth was researched in a large group of individuals with autism, and it was found almost exclusive to males with regressive autism; the researchers suggest this result may indicate a different cause for regressive autism in males, than in those with early onset autism.

It is entirely impossible to reverse abnormal brain growth, so the most that can be hoped for is to find out what factor or factors causes it and to attempt eliminate it, to prevent that abnormal brain growth, and the regressive autism that may accompany it.

Regressive autism is a terrible thing, Autism Speaks understand this as well as any parent or family member who has had a child that lost their ability to communicate with the world; it is the reason the organization was formed, to find what causes it and to find a way to prevent it and or cure it.

There is no advantage in losing one's ability to communicate with the world. It would be a wonderful thing if researchers could find a way to prevent it in some children, but, since it appears that abnormal brain growth may be a contributing factor, unfortunately, they are not going to be able to reverse that aspect of the condition.

The difference in preventing that abnormal brain growth, could potentially be the difference in a child gaining your abilities in life as opposed to a child that never gains full self care abilities in life.

The factor that causes some of these cases of regressive autism could be as simple as one environmental factor that has not yet been conclusively identified. As you know the controversy regarding vaccines continues, however new research into auto-immune system problems could result in findings that eventually leads to the prevention of regressive autism disorder in some children.

This isn't any small number of children either. It is estimated by the government that 25 to 30 percent of measured ASD's are regressive autism. That is several hundred thousand children.

http://en.wikipedia.org/wiki/Regressive_autism

This is the type of research that Autism Speaks supports and funds. If that research leads to the prevention of regressive autism in just a small subset of children with autism in the future, the hundreds of millions of dollars into research, will have been worth every penny.

When the word cure pops up out of the blue, if you will, think about those children with regressive autism, and the real potential that children in the future, might avoid losing their ability to communicate with the world in childhood, because of the kind of research that Autism Speaks and other organizations support and fund.

That's why autism speaks formed, and that was the specific goal from the beginning, to give those parents and families of children with regressive autism an opportunity to voice their pleas to do something to help their children communicate with the world again.

And, as far as your statement of finding a way to cause autism in disatisfied individuals without autism, I can promise you that no one wants to lose their ability to communicate with the world. Can you imagine what it would be like not to be able to speak, at all?

You have no proof. Cure isn't a form of running others' lives. And actually, some are aware of the genius associations with autism due to some media coverage. The ignorant aren't relevant in this decision.

There are lots of articles out there and in other media coverage pointing out the successes of the high-functioners. I guess it doesn't make sense that they only call themselves Autism Speaks. If their efforts are really towards cure, I don't think they will have the upper hand in implementing cure, and consequently won't lead to "forced cure" or whatever.

QUOTE OF Aghogday,And, as far as your statement of finding a way to cause autism in disatisfied individuals without autism, I can promise you that no one wants to lose their ability to communicate with the world. Can you imagine what it would be like not to be able to speak, at all?[/quote] end of quote-VTsavant says I would call that statement assumative.like we decided earlier we cant realy speak for anyone.but there is a high likelyhood that with hard core autism other people are a non issue.i dont believe that statement is a fact

@aghogday,sorry i messed up the quote,my machine wouldnt let me cut and paste right

I had read some materials on the role of oxytocin in autism/aspergers and then on oxytocin's role in relationships and women. Many of our social deficit components are a result of having the lower oxytocin levels. However women are in contrast to men, superproducers of the bonding hormone oxytocin. There are probably far more women who go undiagnosed than men because they lack many of the social deficits or are just better prepared by their gender dynamics to cope with their social deficits.

I experimented with oxytocin for a few weeks and found that it did indeed improve my social deficits and that it did help me feel at ease in new social settings. The drops and nasal sprays don't do nearly as well as the body spray though. Breathing in small quantities over a long period of time does much more to reduce social deficits and calm nerves. Inhalation in small quantities is also a natural pathway.

Mentally competent Adults in the US, have a right to refuse any type of medical treatment, as they see fit. As long as one lives in the US and the laws remain the same; no one can force treatment on a mentally competent adult.

From a clinical and diagnostic perspective, as I provided a link, and quoted earlier in the thread, all ASD's are identified as considerable disabilities, even Aspergers per diagnostic features listed in the DSM IV TR.

The potential accommodations needed in the workplace, for individuals with HFA/Aspergers, are subtle and numerous, anywhere from noise reduction/light reduction, to education for fellow employees in the workplace to understand what the condition is.

The ADA enforces the accommodations as they do with all other disabilities; Autism Speaks cannot portray a condition, in photograph or short video commercial, that does not appear significantly disabling, without confusing the general public as to why accommodations are a requirement in the workplace.

It would take a documentary to do this, which has been provided in the past by Public Broadcasting networks. Autism Speaks website explains it quite well, but a photograph or commercial does not provide enough information for an understanding of the details associated with accommodations in the workplace for Aspergers/HFA.

Kanners autism and low functioning autism are not acceptable clinical/diagnostic terms. Autism disorder is used to describe both in the clinical environment. It would not be appropriate for Autism Speaks to use those terms

Both HFA and Aspergers are clinical/diagnostic terms used to describe individuals with at least normal intelligence, along with other identifying charcteristics; there would be no reason for Autism Speaks to identify these classifications in their advertisements unless they were intending to illustrate the differences in individuals.

Again, though, the observable differences are difficult to display in a photograph or commerical. Comparitive differences between an individual with Aspergers and an individual with no identified disorder would be difficult to illustrate without detailed documentary.

Aspergers/HFA is so rarely identified in the workplace, that it can require specific educational efforts for fellow employees, in each rare workplace scenario. What is even more important is that individuals with Aspergers understand that it is understood as a legal disability, when assessed as such, under the ADA, and that they can access subtle accommodations like noise reduction measures, or lighting accommodations.

The phrase Autism Speaks neither implies or means that they are attempting to speak for any autistic person that can speak for themselves. The founder of the organization clearly indicates on their website that the phrase was developed to give the many disenfranchised families of autistic children, a voice. And the phrase was inspired by the founders own grandson and other millions in the world just like him that have regressive Autism.

When people suggest that the organization is intending to speak for autistics that can speak for themselves, they may not have looked for clarification from the actual organization, as to what the organization's intention is, by using the phrase "Autism Speaks", to identify the organization.

The organization does intend to represent the entire spectrum in their advocacy efforts, as detailed on their internet site, but portrayal of Aspergers in commercials; for instance if a commercial showed someone flapping their arms, would probably upset the segment of individuals with Aspergers that have never engaged in that behavior.

It's probably better to provide full information in a scientific documentary or on a website on Aspergers/HFA rather than attempt to display it in a photograph or a video commercial, for all whom are concerned.

http://www.autismspeaks.org/about-us/founders-message