Autism Speaks #MSSNG campaign. Google involved - Thoughts?

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alex
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10 Dec 2014, 2:06 pm

Google has teamed up with Autism Speaks to try to find out what genes are responsible for autism.

Here's a link to the official page: http://www.mss.ng/

Business Insider published a piece referencing AS as "controversial": http://www.businessinsider.com/google-l ... ks-2014-12

Quote:
So far, scientists have sequenced more than 1,000 genomes (the complete set of genes in a cell) and are working on 2,000 more.

Autism Speaks speaks says that 1 out of 68 people in the U.S. are affected with autism spectrum disorders, with boys more frequently diagnosed, 1 out of 42.

Not everyone "on the spectrum" suffers from some of the developmental problems associated with autism, nor views autism as something that needs to be "cured."

And because of that, Autism Speaks and this project in particular is controversial in the autistic community. A blogger on the Autism Women's Network went so far as to call Autism Speaks a "hate group."

Autism Speaks said this project is for people who do want more information and more treatment options.


http://www.businessinsider.com/google-l ... ks-2014-12


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PlainsAspie
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10 Dec 2014, 2:11 pm

I'm thrilled to see that the hashtag seems to be quite successfully dominated by pro-neurodiversity self-advocates on Twitter. Autistic people are #mssng on the board of directors and in leadership roles at A$.



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10 Dec 2014, 5:03 pm

Quote:
Not everyone "on the spectrum" suffers from some of the developmental problems associated with autism, nor views autism as something that needs to be "cured."

And because of that, Autism Speaks and this project in particular is controversial in the autistic community. A blogger on the Autism Women's Network went so far as to call Autism Speaks a "hate group."



If someone is "on the spectrum", then they DO suffer from developmental problems. Autism/Asperger's is a developmental condition by definition. If a few unscrupulous practitioners are diagnosing without the presence of developmental problems it is a completely separate issue, which is completely irrelevant and purely an issue of greedy people which happens everywhere- medicine, religion, journalism, politics etc. The fact people they consider as "high functioning" are against this charity is no excuse for them using their control over the media to make life harder for those who work very hard to mask outward signs of their autism to be able to live their lives. They are now having to suffer from their developmental problems AND not being believed when they ask for help. This argument is already making our lives even harder!

MANY Autistic people, of varying "functioning" levels (we ALL have great strengths and weaknesses) are against autism speaks because of the inaccurate and hateful messages they put across to the general public to make money. They spread fear, not love. This is an organisation which, (because of their past behaviour and the fact even their name is misleading- they have no autistic people speaking), is generally not trusted by those on the spectrum. We are not as stupid as they'd like us to be. We just think and communicate differently. We would not like our "kind" to be databased and then wiped out. The vast majority of all humans do not wish they weren't born! We want money given to autism charities to be spent where it is NEEDED desperately- to raise real awareness of the condition- to help autism REALLY speak- and provide solutions to the problems we do want help with, like the comorbidities which cause us pain.

When I look at the child on the campaign adverts, I do not see what they are trying to put across. Are they really trying to say HE is missing?! He has very 'knowing' eyes and obviously has more intelligence than all of autism speaks put together. He must pity them and will inevitably have to deal with the fact that his parents allowed his face to be used to spread a hateful message which helped their attempts to eradicate people like him. I pity him for THAT REASON ONLY. He is surrounded by people who are ignorant of his abilities because they are too wrapped up in their own lives.

I have no doubt that this database will be used mainly for evil purposes, like pre-natal testing. I'm firmly of the belief that if you do not want a disabled child, then you are not the kind of person who should have children. I am not against abortion in general, just abortion of certain sections of society. Have we as a race (the human race) not learnt anything about the danger of eugenics in the hands of the rich and "powerful"?! Why not give autistic scientists and theorists (arguably the best you'll get) the money to help THEM do what they want with it? Oh, that's right... we may actually be able to live successful lives and work out how to get rid of hatred and inequality in thew world. They wouldnt be able to abort us all. How awful that would be!


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alex
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10 Dec 2014, 5:17 pm

AlienorAspie wrote:
Quote:
Not everyone "on the spectrum" suffers from some of the developmental problems associated with autism, nor views autism as something that needs to be "cured."

And because of that, Autism Speaks and this project in particular is controversial in the autistic community. A blogger on the Autism Women's Network went so far as to call Autism Speaks a "hate group."



If someone is "on the spectrum", then they DO suffer from developmental problems.

How would you know if another individual is suffering from a problem without asking them? Plenty of people have problems but don't "suffer." There's nothing in the DSM stating that individuals must suffer. They must display symptoms however.

Suffering: https://en.wikipedia.org/wiki/Suffering

The statement "I have problems" is not the same as "I suffer from problems"


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PlainsAspie
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10 Dec 2014, 5:39 pm

I do have challenges as a result of aspergers, but I wouldn't say I "suffer". "Suffer" is such a strong word. Some on the spectrum may suffer, and I'm not trying to deny that.

We could improve the lives of everyone on the spectrum if resources were spent on services and research into practical interventions rather than research into pipe dream cures.

Time and time again, I read or hear of parent of severe autistics say how they worry about what will happen to their kids when they (the parents) die. So, I say let's take money being spent on unrealistic research and spend it on independent living services, group homes, etc.



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10 Dec 2014, 5:44 pm

I don't understand why the hashtag is called "missing." What is missing? The gene that causes autism?



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10 Dec 2014, 6:09 pm

Looking around the net I found this from ASAN:

#NotMissing - link to ASAN

I think it is quite an unfortunate choice of hashtag. If it is the gene that is missing, I guess the goal would be to identify it and eliminate it, which suggests that autistic people are better off not existing. Harsh.
I can't help but think that "missing" is meant in the sense that there is something missing in people with autism. I could be reading that into it though.

With google and AS teaming up on this, I suspect they will find what they are looking for quickly, if indeed autism is genetic. Perhaps autism will just be a blip on the radar of human history.



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10 Dec 2014, 6:16 pm

alex wrote:
AlienorAspie wrote:
Quote:
Not everyone "on the spectrum" suffers from some of the developmental problems associated with autism, nor views autism as something that needs to be "cured."

And because of that, Autism Speaks and this project in particular is controversial in the autistic community. A blogger on the Autism Women's Network went so far as to call Autism Speaks a "hate group."



If someone is "on the spectrum", then they DO suffer from developmental problems.

How would you know if another individual is suffering from a problem without asking them? Plenty of people have problems but don't "suffer." There's nothing in the DSM stating that individuals must suffer. They must display symptoms however.

Suffering: https://en.wikipedia.org/wiki/Suffering

The statement "I have problems" is not the same as "I suffer from problems"


That is true, but I use the term because when most people are asked about their problems or difficulties they would admit to have used the word "suffer" at some point. All problems are relative.

I do think the majority of autistic people have "suffered" in one way or another during their life, even if it is just as a result of their own or other people's lack of understanding of autism, otherwise why are we trying to change things? I would say I "suffered" from my skin conditions and allergies for example, but I still wouldn't trade in my brain just so I could feel less physical pain. Maybe I should have used the term "experienced" problems/difficulties? If they are using such strong language in their campaigns I don't think my choice of words was too extreme though.


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10 Dec 2014, 6:17 pm

anyone wanna join Boycott Autism Speaks? I like the Autism Society of America a lot better



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10 Dec 2014, 6:21 pm

Quote:
Suffering may be categorized as physical[3] or mental.[4] It may come in all degrees of intensity, from mild to intolerable.


^^from the wikipedia definition


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10 Dec 2014, 6:28 pm

alex wrote:
How would you know if another individual is suffering from a problem without asking them? Plenty of people have problems but don't "suffer."


What makes something a problem if someone isn't somehow suffering from it?


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10 Dec 2014, 7:49 pm

I think that I am not missing. Everybody who cares knows exactly where I am right now. Same place I am at a quarter to eight every Wednesday-- in my living room. With my family. Living my life.

There is not a hole in the world, or in a family, where a "normal" girl was supposed to be born in 1978. There is not a hole where a "normal" woman should be now.

My husband and my friends say the only hole is the one in my psyche or soul or whatever, where thinking that it's OK to like myself should be.

I wonder why that is?? That is a rhetorical question.

I think that I would like to have more answers, and more information, and more treatment options.

I think that I would also like for it to be OK for me (and about 3 million other Americans) to feel like we're OK just the way we are.

I think that a genetic test, especially in the absence of improved acceptance in the social climate, would most likely just result in more abortions.

I think that THAT would be the definition of "millions of missing children."

I think that I am going to have to find another search engine if Google now supports Autism Speaks.


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10 Dec 2014, 9:04 pm

the genetic information is missing. I say keep it hidden. Humanity is as morally ready for this as we were for the atomic bomb during antiquity.



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10 Dec 2014, 9:22 pm

Google is evil, Auti$m $peak$ is evil, where's the surprise?



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10 Dec 2014, 11:04 pm

The whole project involves taking genetic information from smaller-scale studies where people didn't give informed consent for a project on this big of a scale. So, informed consent is #mssng



alex
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10 Dec 2014, 11:53 pm

John Robison has this to say: http://wrongplanet.net/whats-mssng-autism/


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