Autism Speaks #MSSNG campaign. Google involved - Thoughts?

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See, one of the problems I can see, from my perspective; Is that Speaks essentially has a megaphone, and AS people are gagged by comparison. They can spew out as much hateful bigotry as they want, and a lot of people will hear that megaphone, but not many will hear our words.

Let's see if we can extrapolate this and create a lawsuit out of this. A large scale lawsuit is just what we need. Problem is it might be hard to get into contact with the people who are actually in the place to sue.



I agree, and I've actually thought through a few ideas. The one I'm entertaining right now is about a black man struggling in a racist society which stands as a metaphor for autism and ableist, but I realize that would be extremely tasteless for a white guy to write.

Check out their video:

link to AS mssng campaign

They want to "conquer the unknown." And talk about different subsets of disorders and specialized treatment. So does that mean they are going to start messing around with DNA? I can't even imagine how dreadfully wrong that could go. I guess the question is where does autism begin and my identity end, or are they inseparable? At this point I'm hoping that if they do mess with the genetics of people with autism that an autistic person will be the first real life genetic mutant superhero. That would be cool.

Gah, I was trying to come up with branding for that autism charity we're all starting - - and came up with the below (domain name available), but with further research I found a small organisation using that name...

Any other suggestions?

It's a little disheartening to see such an anti-science sentiment in this thread. While the branding and focus of this campaign leaves a lot to be desired, I don't like seeing the "oh no lets not do genetic research. Think of all the bad things that could happen " sentiment.

Think of technologies that help us like
Nuclear medicine
Lasers
Microwaves


The same could have been argued about research related to all of those.

I have no argument against genomic research into the causes of ASDs but I can't really see the promise in sequencing single samples from such a wide sample group. Considering that this study views ASDs as developmental abnormalities, shouldn't the epigenome take equal priority at least? I would imagine sequencing multiple cell types from a narrow group of patients with the greatest possible variance among their lifestyles, ethnicity and reported symptoms would yield more insights than proverbially throwing the spaghetti at the wall...

Science is a good thing, but that doesn't mean sending blueprints for an atom bomb to the Nazis during the second world war would have been a good idea...

This research will inevitably be done at some point, but I would rather it was done by a) a trustworthy and ethical organisation (not one that seems capable of genocide and excludes the very people it pretends to represent) and b) I would like sufficient legislation to be in place to protect against the research being used in the wrong way.

Also, I understand the value of collaboration between research institutions but what I've seen thus far really doesn't scrape the surface of what open source actually means. They should be letting people share ideas and interface concepts for means of crowd-sourcing the interpretation of this data. Promises of "open source" mean publicizing the data, not bouncing it around between laboratories. People on the spectrum might actually be given a voice in this matter if we're able to leverage our propensities for pattern recognition.

It's an open source database so the data is open to anyone.

TBH I'm more concerned about Autism Speaks lobbying budget than the research. It's the lobbying that will allow them to weaponise it.

When a genetic test does come out, it won't be to enhance the life of the fetus. If all Joe and Joanne Critter Six Pack hears about Autism is some non verbal kid beating his head against a wall screaming, or a 30 something unemployed guy living in his elderly parent's basement, I think it's a good chance that pregnancy will be terminated.

Genetic testing is pretty common now, I was offered termination of my pregnancy due to maternal age (39), and my history of bipolar disorder. That was before ANY genetic testing was done, and it was 10 years ago. And the doctors heavily pushed it.

The other part is, if you do have a kid with Cystic Fibrous or Downs, you get a lot less sympathy. It's more made bed lie in it. You hardly see any Downs Syndrome children anymore. I saw a family with a little DS girl (about 2 years old), and it surprised me. Growing up, DS children were much more common.

Less special needs kids/people=less money out of the tax payers pocket. People find that attractive.

I am a scientist so I'm not against science obviously or for that matter even learning about the genes that could lead to autism. The problem I have is that knowing the genetic markers are not going help or support people already living with autism. The only thing that they could try do with that is possibly develop a prenatal genetic test for autism. Though I think that would be hard because we already know that the genetics of autism are far more complex than what they previously thought it could be, it's not just a single gene or chromosome.

I have nothing against science and I don't respond the #ntmssng hashtags on twitter.if we were to stop doing scientific research because someone might use it for destructive purposes we would have to end all of the worlds technology.

think how many lives could be saved if we baned all cars,guns,swords,drugs/medication but then again we would all be dead of bubonic plague by age 30 because we no longer have anti biotics.

life is not a game of whether to discover,but what to do with our discoveries

When cars were first invented lots of people died. Legislation was then put in place first for speed limits, and then for seat-belts (in most developed countries). Legislation could save yet more lives on the roads if it was made mandatory for car manufacturers to implement collision-avoidance technology into all new cars, which many companies are in the process of developing.

Cars have also saved lots of lives, through ambulances getting people to the hospital faster or fire engines getting to homes faster to put out fires. They have also allowed people to spend less time traveling, and more time enjoying their life.

The issue in the past was not about cars. It was about ensuring that legislation was able to keep up with developments in transportation technology. If the legislation for things like speed limits and seat belts had been faster, less people would have died on the road, and so we would have been able to better benefit from the joy of the new technology.

However, legislation is often about 10 years behind technology (being optimistic). Legislatures are often too tied up in party politics for that to be improved much. When legislation is faster, it is often as a result of lobbying by special interest groups.

The problem is not only that Autism Speaks is doing the research it is doing, but that it is the best placed to lobby for how it is used... and that is scary.

What is more scary is that a "cure" could be pushed as a way to save money for insurance companies and health services. People could be pressured into aborting a child because of social pressure that "their baby would cause higher taxes" and fed with fear that "their child would tear their family apart". Rhetoric Autism Speaks already uses.

Additionally, if a "cure" was developed for autism in people that are already born, they could be threatened with the removal of their support or health insurance if they did not take it. And the nature of such a "cure" could be drastic, and would likely have unintended side effects down the line (rewiring a brain is a pretty drastic thing).

We also have to ask ourselves; "Is a homogenised society really a good thing"? I'd argue no. Diversity equals strength.

Within the past ten years there have already been frenzied discussions in the media about wiping out Autism, especially when people thought it was caused by vaccines. It is those same people that are behind this "scientific effort" (irony, eh).

We are not against science, but we ARE for science being ethical, responsible and accountable, and for legislation to be not only ahead of the game, but to think about more than saving money for insurance companies and allowing lower taxes for the rich.

we could end opiate addiction by burning every poppy plant from the gold coast to khazackstan and Georgia but recovering from surgery or serious injury would mean going back to jack daniels and bitting a bullet.
any scientific discovery that could make life better for people always has the risk of the wrong people using it for distruction.
police scanners were good for undercover officers who were not in radio patrol cars or auxillery police who would called in to an emergency.burglers use them to see if police are on the way after they have commited a BNE

it does not matter what autism speaks does with its research,since the beginning of science you can pervert any invention

Accidental deaths in automobiles of people who voluntarily used them are not tantamount to intentional deaths by abortion.

Martin Luther King, Jr. said it best. "But America, as I look at you from afar, I wonder whether your moral and spiritual progress has been commensurate with your scientific progress."

I'm not anti-science. Science is morally neutral. Morality comes in how we use its results. I for one think more harm than good will come from this particular scientific endeavor until our society starts to place more value on human life.