Autism speaks is wrong, you can't cure whats not messed up.

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I don't think Autism Speaks wants to do that. I think there's some misinformed parents who would like to, though, and tack themselves onto Autism Speaks because they think they'll do something about it. I'm talking about those freaks who advertise their Autistic kid to the world and act like they're such a liability because of their differences... I sure wonder why their kid isn't "attaching" to them, hmph! Although I really don't agree with pre-natal screenings though because that could really get out of hand really fast with these kinds of people. ew.

Autism Speaks is a good resource, although I wouldn't probably donate to them, since I don't really agree with all that marketing. lol

I agree. I would also like to say that pre-natal testing for Autism would be much worse than a straightforward "cure" because in the UK, 90-93% of fetuses with Down's Syndrome are aborted. For a moment, let's imagine that pre-natal testing for Autism was established around 15 years ago and that 92% of Autistic fetuses were aborted. Including myself, 8 people attend my weekly youth club for adolescents on the spectrum; if pre-natal testing were available, it is very probable that only one of us would exist. One of the few things that bring is spending time around like-minded individuals and if I didn't have any friends, my life would be even more miserable than it already is.

Another obvious implication would be that if Autism had been extremely rare for 15 years, this would result in a lack of both awareness and support services which would create even more problems for Autistic people - especially children and adolescents.

Not only would pre-natal testing result in the horrific genocide of a wonderful group of people, it could also make life unbearably difficult for those whose parents chose not to murder them.

I wouldn't tack Autism Speaks onto that though. That's more of society's problem than Autism Speaks actually advocating that. Unless they do, prove me wrong. But I know so many parents that would abort their kid if they had autism (thankfully I know my mom isn't like that!) because of both misinformation and a horribly out-of-touch stigma that it would INDEED be a problem which is why I'm against that.

Actually, I really don't like that pre-natal testing for Down's Syndrome either... that's pretty scary actually. I didn't even know that

If anything I'm more pre-natal testing in general than the group itself. Why is it all the sudden that in just the last 20 or so years this suddenly becomes a problem, and suddenly it's such a bad problem that we have to exterminate them lest we "have to deal with that". I mean, consider how long people have lived on this planet and then consider how long this whole "defeat-autism" mentality has existed and it really just puts into perspective that this is not something we should really be destroying, but rather just learning about...

I think it far more likely Autism will be treatable, than a test be developed that can identify Autism yet no treatment method be available - the shaky premise behind that idea is that Autism is a 'hardwired' unalterable difference. There is no proof of this, it is supposition.

The model for the genocide rhetoric is the available tests for Down syndrome, a condition for which we know there is no 'cure' available.
But Autism is a lot more subtle than an extra chromosome - if it wasn't it would be easier to find the cause. That to my mind suggests some forms may be treatable.

And that I guess hinges on whether you consider Autism a difference or a disability, and that may in itself hinge upon how affected you or your family member are.

I think a big problem with this whole autism thing is that you get generally several groups of people with it; there's people like me who can function pretty well but are a bit off-key so to speak, and then there's other people who have it in varying degrees of more and more severe. I'd say that about 90% of my friends are somewhere on the spectrum but I wouldn't say at all that any of them are that much more down the spectrum than me (and I'd argue that some of them are less so than me as well), of course, a measurement for such an obscure subject is difficult, if not impossible. So it's more common for people around my range to appear than say someone more on the more severe lengths of it.

However, putting it all under one umbrella called "Autism" makes sense from a scientific perspective, but it also causes a lot more people to associate people like me with people who are much more severely disabled than me. This in turn causes people to feel that autism in general is a blight and should be eradicated, but I think that changing myself is not something I'd want to do.

It's pretty scary to actually think like that - there is substantial proof to show that the disorder is at least neurological, and curing such a neurological disorder is really touchy, especially with people like me. Think about it - they essentially want to rewire your mind. That's very scary if you think about it.

In addition, if they found what causes autism and could detect it while the baby was in the womb, it's pretty scary to think if in the future that if my mom was more "typical" on her views of it, and she found out through pre-natal testing that I had autism, that my future self could have been aborted for something that ended up not really being all that bad.

The bottom line is is that a lot of people fail to understand the "spectrum" bit of autism spectrum disorder and tend to group them all into a box meaning "bad". It's been "spreading" so to speak because the definition of it has been changing more and more, which also risks spreading that bad stigma to people who aren't all that incapable of functioning, such as myself. I mean, for years I felt like it was bad until I started looking into this stuff really deeply, leading to a diagnosis I would have never anticipated years before.

Again, this isn't Autism Speaks' fault, it's more the fault of stigma.

I don't know if someone has pointed this out yet (if someone did, I'll delete this post).

Here's (link) 'Autism Speaks' profile on Charity Navigator, a very useful site for, well, navigating charities.

In the "reviews", it looks like a lot of people are not okay with how 'Autism Speaks' is ran. 2 out 5 stars. Even if half those people were lying, the profile would still have a very poor score.

It looks like they cross every 't' and dot every 'i' when it comes to filling out forms and providing information about their charity. Nearly every box is checked. However, it looks like they have major issue with money. $30 million goes to their programs, but $16.4 million goes to fundraisers! That's a lot of money misspent and it really holds them back. Compare with this (link) Autism-focused charity. The second charity receives less money, but the vast majority of its resources goes to the programs. Here's (link) another one (it's not Autism related). See the pie chart? A good charities pie chart should look more like that, with most of the revenue going towards the programs. Also note the president of Compassion International, a charity that receives $400 million more dollars in revenue, receives $100,000 less than the Autism Speaks president.

But still, it could be worse. It could be the Cancer Survivors' Fund (link).

Now regarding their ethics... I can't seem to find any evidence regarding advocacy for abortion or forcing drugs on people. I only see awareness advocacy (which we do need more of) and pretty reasonable programs. I'm still looking though. If anyone has proof (from a credible source, of course), please provide it.

Yeah, I have a problem with their marketing, like I said earlier. I just also have a problem when people say THEY'RE ADVOCATING ABORTING AUTISTIC BABIES because I highly doubt they actually advocate that.

People already have the legal right to abort pregnancies at risk for autism, and are provided statistical risks provided by genetic counseling based on family risk factors, where information is provided that the chances of autism are much lower in a pregnancy if a male fetus is aborted over a female fetus. The information for familial statistical risks is available on the internet, for those that choose this legal option.

A prenatal test that includes the risk for abortion is already available, that autism speaks did not develop, that provides low risk statistics for Autism along with information on about another 150 disorders/genetic anomalies. However it requires amniocenteses, which is usually only advised in high risk pregnancies.

The most definitive postnatal test currently being developed is in Australia, with potential odds of detecting Autism Spectrum disorders at 70%. If the test is eventually used as a prenatal test, it too will require amniocenteses, and will likely only be provided in high risk pregnancies.

Eventually a non-invasive blood test that scans for the whole human genome will be provided to test potential disorders/genetic anomalies/other physical characteristics, but it is not likely insurance companies will cover it, with individuals that can afford it likely having to spend over a thousand dollars to afford it, once it becomes available.

One cannot provide a similar comparison between the down's syndrome prenatal test to the prenatal test that screens for autism, as the risks provided are much lower for autism, and there is a non invasive blood test that screens for factors associated with down's syndrome before amniocenteses is advised to use the more invasive procedure for a more definitive answer.

Amniocenteses is a risky procedure in itself for a miscarriage, it is highly unlikely someone is going to risk that specifically for the purpose of determining low risks for autism, and even in the case in the future if the more definitive postnatal test is used as a prenatal test, unless one is determined in finding out a more definitive answer that has individuals in their family that already are diagnosed, providing a higher statistical risk, it's not likely that many are going to risk amniocenteses to find out.

It's highly unlikely a simple blood test, covered by insurance, like what is used to screen for down's syndrome blood factors before amniocenteses, will be developed to screen for autism, other than the much more complicated eventual provided genome wide test, that will likely not be covered by insurance, and will be quite expensive as an out of pocket option.

As far as the topic goes, Autism speaks has already provided public information that they are not funding a prenatal test, that can be easily verified as the sources funding the actual development of these prenatal tests are not associated with Autism Speaks. Autism Speaks research is also an open book for review on their internet site, where one finds no evidence of research done for a prenatal test for autism.

Actually, the Charity Navigator organization posted the wrong numbers for Autism Speaks frpm their form 990 for 2010, in their report provided a couple of weeks ago, that is yet to be corrected, as a correction request has been sent to that organization.

If one hovers above the bar graph that compares numbers from 2009 to 2010, one sees the correct amount of over 35, 297, 855 from the 2010 form 990 for program expenses as compared to the incorrect number of a little over 30M posted for the latest incorrect report from the charity navigator organization.

The accounting and transparency figures stayed identical from the previous report provided in Feb of 2012; the same 2010 form 990 from Feb of 2012 was used in this Sept 2012 charity navigator report. The charity navigator organization's financial ratings are completely determined by the form 990, so it would be impossible for Autism Speaks ratings to change for financials unless this mistake was made by charity navigator.

The comments section of the report have no bearing on the actual ratings provided by the charity navigator organization as anyone can go to that section register as an anonymous user and say what ever they want to whether it is based on fact or not.

The charity navigator organization rated Autism Speaks at 3 out 4 stars until this mistake was made in the September 2012 report. The Actual form 990 from 2010 is linked below that shows on page 10 that 35,297,855 were spent for program expenses, 11,156,498 spent for fund raising, and 2,203,217 spent for administration expenses

The Autism research institute is not an autism advocacy organization, it is a research only organization. It is not a charity that can be equally compared with expenses as research organizations and advocacy organizations have different expenditure requirements. When the figures are corrected Autism Speaks rates the same rating as the other two autism advocacy organizations that the charity navigator organization rates, the Autism Society and the Doug Flutie organization; all receiving overall ratings of 3 out 4 stars.

http://www.autismspeaks.org/sites/default/files/documents/990s/2010_tax_form_990.pdf

Last edited by aghogday on 16 Sep 2012, 12:03 am, edited 1 time in total.

This isn't all about you. I have nothing in my life, and those who function well are not my priority, and I don't prioritize your petty unfounded fears. What is scary for me is the actual disability I am bound to. Others doing better is what scares me. Cure won't be abandoned. Please don't attack it.

It's not all about you either...also who are you to decide if someones fears are unfounded or petty, I'd disagree with that assessment as I find those things disturbing as well. If it does not disturb you then it doesn't disturb you does not mean that makes your feelings on it more valid. I mean I personally don't see what is scary about others doing better than someone, but I am not going to say its unfounded or petty to feel that way.

Also I have to point out attacking the idea of not wanting a cure while calling someones fears 'petty and unfounded' isn't a very good way to convince people they should not attack the idea of a cure.

I'm another person who realizes the absurdity of and the real intentions behind such "fears". It's no coincidence that many who worry of their personalities being hurt by a cure intended for someone else, are the ones who are highly abled and don't even need cures. There has to be some reason why they're trying to come up with such scary and demonic descriptions of some potential medical treatment designed to get rid of impairments that impede other individuals' lives.


I can't just pretend that they're not going to try to enforce their idea on all of us. It's not like I have no reason to worry.

Well, it's a spectrum after all. I can't speak for people who have a more crippling version, but at the same time it IS pretty scary for those who don't have it that bad to be modified because people want to shove it all into the same barrel. I mean, it IS neurological. A cure would literally rewire your entire mind; you would become someone ELSE. That's pretty scary.

I highly doubt that anyone will force a cure on anyone, but my point is, is that if someone is told their kid in the womb has high chance of autism, it's VERY likely for that kid to be aborted out of fear of that kid having it, even if it weren't a complete cripple like in my case (or in a lot of people's cases). Like I said, it's a spectrum, but if you put it under an umbrella people don't understand that - especially with something that is that difficult to measure.

Another problem with a cure is that this dramatic change could be forced, by their parents, on children who don't really understand the consequences of such a cure (not that I think the parents or even doctors would be much better), and they also are not at the age to decide for themselves what they want for themselves. Not only that, especially at very young ages, it's difficult to tell how severe the condition will become. Don't you think that's a bit unfair? If my parents changed me in such a dramatic way and I found out about it, I would feel like I was ruined, like I was changed because I wasn't good enough for them. I would feel absolutely horrible. I mean, again, I can't talk for everyone but it is a pretty nasty thing to think about.

Personally how I feel is that people should just learn to accept that people are different. Again, I can't speak for you, but at least in my case my problems are those induced by other people rather than just myself. If people learned to respect that people are not alike, this "plague" wouldn't be nearly that much of an issue. I certainly think things would be better for you too, perhaps it would still be a crippling effect, but at least better, if people were more knowledgeable, less judgmental, and more accepting. Once people get over my quirks and habits (which seems to be very difficult for most people!) they'll realize they have a talented individual under there, and I bet that you're at least somewhat similar in that respect.

I mean, feel free to disagree, but I like the way I am, despite my (sometimes severe) flaws.

The actual scientists researching cure know it's a spectrum, and will have to deal with that accordingly, as cure will have to be individualized according to etiology. Cure wouldn't even make sense for someone without impairments. That's not a complicated concept. The fear that it would be forced on you is unfounded. The entire mind is not rewired. That's a repeated misconception. Cure isn't going to change identities. You can't speak for them, but are trying to come up with justification to control others.


Lots of children are aborted. Not all who are prenatally identified with a condition are aborted. And prenatal tests aren't administered to all who are pregnant.


Children first of all don't have any weird wishes to be disabled. Actually, many autistic children have been noted as being frustrated with their difficulties in communication. The fact that you mentioned that children wouldn't understand the implications of it, is why parents will justly make the decision to cure their children. There likely will be ways to determine severity with tests. Gene expression differences have been proven between functioning groups. They will know what to look for eventually. What is unfair is that you have access to a disproportionate amount of ability compared to others, permitting you to do many things that others can't. You wouldn't know what it would be like for disability to be prevented from affecting you. My actual reality is that I don't get to be good enough for myself. This isn't all concerning parents. I really have a terrible and loathsome lot in life. These hypotheticals you mention, which don't make sense for the real goal, won't apply.


It seems you think of ability/functioning as only an extension of one's psyche and identity, inseparable from one's choices. That is truly absurd. Abilities enable one to act according to the choices they want to make, and they expand the set of options one has with which to make choices. Shortfalls of ability make one cause outcomes that are against their real wishes. This is not "difference" The problem for me is that others have access to abilities I need, so I have to depend on them for things, because I can't do them for myself. What else is there to understand about this? You don't seem to have an idea of what it is like to struggle just to get basic things done right, to go without doing some tasks completely, and much less tackle enriching/advanced activities. I don't want others' charitable hand-me-down acceptance. I want my own access to ability that others have access to and use of. I work hard enough. And so do many others. If ability was spread around to all, those who were smarter than others wouldn't be needed to do things for others at their own convenience, as others could work on it themselves.

And I can't just pretend the pro-cure people wont try to enforce their idea on all of us...its not like I or the others who would prefer not to have an invasive attempt at a cure have no reason to worry.

I am an Autistic adolescent (whether or not you'd consider me a child is your own prerogative) and although the difficulties I face in communication frustrate me, I have always had a positive attitude towards Autism. This may be because my sister is diagnosed with low-functioning classic Autism and I learned from being around her that being different isn't necessarily a bad thing.

All of my friends who are also on the spectrum share a positive view of Autism, and not all of us are exceptionally high-functioning either. In fact, some of us are quite the opposite