So in my last post, I made my comments about MSSNG, Autism Speaks’ new initiative with Google to try to foster more research on the genetic side of the Autism equation, as it were. And then this morning, in my twitter feed, I saw an article that did, at least, clarify for me what folks’ problem (or one problem, at least) is with the whole thing.
It’s the question of the goal of this research.
In a piece published on the Huffington Post by Linda Mastroianni, she argues that research efforts like MSSNG are fine for folks yet to come, but that what’s really needed is to help people currently living with the effects of Autism. The argument is that those who currently have Autism should be more important than looking down the road at helping those yet to be born…
…and while I agree, I think that this can’t be looked at as a zero-sum game.
Look. I think either way you go with it, you’re going to lose. If we concentrate solely on research, then those who are currently affected by Autism are going to be left in the lurch without the resources they need to be productive citizens (and their families are going to be on the losing end for having to come up with their own means to cope). If we concentrate solely on helping those who are affected, we’re essentially throwing up our hands and accepting that this is the way things always have to be, that all we can do is, essentially, play defense against the disorder.
The answer, therefore, has to be a two-pronged approach – research and aid to families/individuals.
And as I’ve argued before… from where I sit, Autism Speaks is doing just fine with their sudden renewed interest in sponsoring research. The fact that they’re throwing their money behind research speaks to the fact that, in our society, it’s sexier to research than to “treat” the symptoms, but… they’re doing something beyond advocacy/lobbying, and it’s a good thing.
I’m biased, of course, because I’m fortunate enough to live in an area where there are other organizations that do step in with aid for families that’s more meaningful for coping with the effects of the disorder. We have organizations that sponsor “parents days out” to watch children, and programs to help older individuals with living meaningful lives in some fashion. We have other groups that sponsor outings to local attractions. Between LISS and other organizations, there are opportunities to get sponsorship for other respite care. This isn’t to say that this is perfect, or that there is no need to raise more money for these efforts – it is, to me, a call for us to do just that. Suggesting that the source of this money should be found by diverting research dollars just smacks to me of being the wrong direction.
I have to hope, as a parent of a child with Autism, that research is going to make it easier for the next generation of parents with children with ASD, which is why I continue to be a strong supporter of efforts like MSSNG, and why I find it counterproductive to complain that money is going in that direction when it “could help” with other things today. Instead, let’s work together, as a community, to encourage more people to donate – broaden the pot, instead of re-allocating – and do more all around to attack this issue.