Last week, Autism Speaks announced a new initiative – MSSNG – that’s aimed at throwing more research at Autism in hopes of understanding the disorder better. For those who have checked out the site, they have a snappy video and some links to news about the initiative, as well as a brief explanation of the matter.
Or… you could be listening on Twitter for the folks who are squealing about how evil this whole thing is.
And the latter group is missing the point.
Now, I’m going to be the first to agree that Autism Speaks is not my favorite Autism advocacy group out there. They have a couple of board members whose personal views on how their families, and their loved ones, have been affected by Autism are not quite in step with my own. They certainly seem to spend more money on lobbying and the like, instead of research or helping families dealing with Autism. Given the options, I prefer to donate to groups locally that do more for families with Autism, such as Pathfinders for Autism, the ARC, or the local Autism Society of America chapter.
But let’s be honest here – we need more research.
MSSNG – pronounced ‘missing’ – is (for those of you who haven’t jumped over there yet) a project to make an open online library of the DNA records of 10,000 families dealing with Autism, in hopes of finding commonalities in the genome that can open new avenues for treatment of Autism. (And, as they put it, perhaps even new subtypes of Autism.) It’s a library. And to listen to folks online, it’s some kind of evil cabal that hints that people with Autism are ‘missing’, or ‘broken’ or whatnot.
Now, I’m not going to say that the Monster needs ‘fixing’, because like a lot of folks, I agree that Autism is part of who he is. (IE, my son is not “broken”.) Does he need help, treatment, and the like? Certainly. Do I think that the MSSNG campaign does anything under the sun to make it seem like he’s less of a person, or that he’s “missing” or something? Balderdash. Absolute garbage.
If they can find something to make his symptoms something he can cope with more fully, if they find something that leads to therapy or treatment that lets him live a full, productive life as a regular person? I’m going to jump at it in a New York minute. The only way we’re going to find new, effective treatments is through research. And Autism Speaks – with Google, in this case – is doing something productive to try to foster some of that research. Between this and the gut-brain-link research they’ve started sponsoring, they’re moving in the right direction, and these kinds of backlashes are not helpful in the long run.
To accuse Autism Speaks of something horrible and evil in this case is just counterproductive. If you don’t like them, fine. But don’t distort what they’re working on for your own purposes.
I uploaded my daughter’s dna data to promethease.com and there were some interesting results. One of the top findings in the report was that she has a gene found in people who report inability to recognize facial expressions. Now, it’s not definitive or exact science, but something to make a person studying autism pretty curious right? I showed the report to our “autism dr,” the neuroped, and he blew me off. With the lack of curiosity I have seen in educators and specialists, it’s no wonder the research is so slow-going.