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chromanebula
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01 Jan 2015, 1:26 pm

Do you support them? I know they broke off from Autism $peaks over the whole antivaccine lunacy. Have they fixed the "nothing about us, without us" problem? Do they see us as screwed up, or not?



alex
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01 Jan 2015, 2:28 pm

They are pretty good. I plan on working with them this year.


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Jono
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01 Jan 2015, 2:50 pm

I heard that Allison Singer is anti-neurodiversity. Scientific research is fine but I think that, as a practical matter, it would much better be spent on ways to support people living with autism than on possible cures, regardless of functioning labels.



PlainsAspie
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01 Jan 2015, 3:47 pm

They are significantly better than Autism Speaks. Whether you're pro-cure or anti-cure and want research to just find treatments that'll make life better, ASF will likely spend or dollars better.

They probably have some pro-curists involved, but their mission statement makes it sound like they have more realistic goals.

It appears that they have an autistic person part-time on their senior staff, Jason Ross. http://www.autismsciencefoundation.org/staff
They don't have any autistic people on their board of directors. They have plenty of room for improvement.

I wouldn't donate to them personally, but I wouldn't boycott businesses that support them either.



Jono
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01 Jan 2015, 4:50 pm

Quote:
I have spent a lot of time in the last year or so speaking with members of the neurodiversity community and have learned a lot from these conversations. These relationships have been very productive for me, and I have a much better of sense of the issues now. I have changed my behavior and rhetoric in response to some of the very good points people have made, and continue to speak frequently with many of the leaders of the neurodiversity community. There is still one big issue, however, on which we disagree. I do still feel that genetics research is the best chance we have for understanding the mechanism of action of autism and creating targeted therapeutics. This remains as a sticking point in my relationships with many of the leaders of the neurodiversity movement, although I do think that we have tried to be friends and continue to talk about this issue. I also don’t think that a belief in the importance of genetics research detracts from my eagerness to support research into supports and services and expansion of funding for this critical area. I have been extremely vocal on that issue at the IACC meetings.


That's a quote from an ASF blogpost in 2009 where Allison Singer was responding to a neurodiversity advocate talking a about the deal with her in the "Autism Every Day" video released by Autism Speaks:

https://autismsciencefoundation.wordpress.com/2009/09/09/speaking-out-about-autism-every-day/

I know that she was critical of Ari Ne'eman when she first started the Autism Science Foundation but from the above paragraph, it looks like she has become more open to the neurodiversity perspective. So it's probably worthwhile to work with them.



PlainsAspie
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01 Jan 2015, 5:45 pm

Jono, sounds like there is hope for common ground. The trade-off between genetic research and service research exists in reality. I wish it didn't, but Congress only allocates a finite pot of money. I do see how genetic research has the potential to be beneficial. Alison Singer gave a good explanation on Autism Talk TV. My concern for is that It's more likely to lead to a prenatal test and abortions than to effective treatments. The genetic research is happening now whether I like it or not, so all I can do for now is hope for the best I guess.

Alex, what kind of work are you planning to do with them?



Moromillas
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02 Jan 2015, 8:15 am

Oh really? I didn't know we had those kinds of numbers.

What kind of science are these Autists currently doing?