Spectrum of Support

So I’m going to wade into the whole thing from last night that blew up (yet again), my Tweet feed, but let me come around to it slowly.

Obviously, being a large community (and, if you listen to the CDC prevalence rate, we’re getting larger faster!), there’s a slew of organizations in the Autism space.  From local organizations to national ones, there’s a vast spectrum that we can pick from when we’re looking for somewhere to ‘belong’, and indeed, somewhere to give our money.

Now, I support multiple organizations.

I love – love – Pathfinders for Autism, for how they provide support and resources for families with Autism here in Baltimore.  They do so much to try to generate awareness in the community, but also to ensure that the families aren’t forgotten about.  There are outings to ballgames, training for responders, advocacy in Annapolis…

I also love how much the ARC of Baltimore does with regards to the families here in the area.  I’m only involved with them insofar as their Dads’ Talk group, but they also offer opportunities for getting out or mingling with other families in the same boat, and there is a lot to be said for providing a safe place where we can talk about how we feel.

We’re also involved with the local chapter of the Autism Society of America.  My wife goes to the monthly meetings (I call in occasionally, since I’m home with the kids), and we attend many of their social gatherings.  I don’t always find the meeting topics applicable to what we’re going through, but I find them massively useful in getting us to think about things or talk about aspects of the Monster’s future that we’ve not considered.

And I do donate to Autism Speaks.  For those who follow my Tweet feed, you see how often my walks through Charity Miles are for them, and I’ve given to some of their fundraisers in the past, including through Sevenly.  I do get why a lot of people don’t like them, and I disagree with things stated by members of their board… but I also view them as an advocacy organization more than a support/research group, and there has to be a place for a lobbying organization on behalf of those with Autism.  (I do wish I saw them more involving people with Autism, and I think there’s other places where change would be helpful within their organization.)

I wasn’t, however, going to go to Chili’s tomorrow night, once I heard about the anti-vax link on the National Autism Association’s website.

Full disclosure – I have bought something through Sevenly previously to support the Big Red Safety Box.  I’ve probably donated other times to support that program as well – I just don’t remember, to be honest – because it’s a worthwhile project.  Anything that helps prevent deaths from wandering is a Good Thing in my book.  It’s my own fault – probably the same thing that Chili’s did – for not having looked further to see that they have links on their site that go over to one of the louder anti-vax advocacy groups.  Being informed of the fact that they have that link, though, I’ve also made the decision to stop supporting them until those links are removed.

As another poster on my feed pointed out, we have to be able to have conversations without name calling and vitriol.  We have to be able to have rational conversations about our differences and commonalities so we can work for what we all really want – the best lives possible for the members of our families who have Autism.

So, before I continue:

There is accepted, vetted research that has shown there is no connection between vaccines and Autism.  There are anti-vax families that have children with Autism, and vaccinated families that have both NT children and children with Autism.  You have the right to disagree with me, but please, cite published studies to back up your argument.  The argument that you “know families whose kids developed Autism after vaccines” is unreliable and unverifiable.  (If you’re working on such a paper, I welcome hearing about it.)

The fact is, I don’t know that we’re ever all going to agree on how to pursue what’s best for our kids and family members.  We’re not going to be on the same page with treatment, or causation, or what we want from the schools, or what we want the government to be doing in terms of research.  But the name-calling doesn’t help.  One side accusing the other of biased research or of being blind to such research doesn’t convince anyone that the other side is right.

Now… as a friend asked on Facebook, is it better to back the ‘wrong’ charity/organization rather than no charity at all?  I can’t really answer that one.  My gut says ‘it really depends’ – it’s better to do nothing than to endorse a charity that takes positions that are damaging to the community or society as a whole.  But by and large, it’s hard to separate a deeply-held position of an organization from the activities they carry out.  The question really comes down to a different one: am I doing harm to a cause I believe in by supporting an organization who advocates fringe/untruthful positions, even if they also do some serious good?

The example above of NAA is a good one – I like the Big Red Safety Box… but I can’t reconcile that with the fact that they have links on their site that advocate anti-vaccine views, or outright lies about the linkage between vaccines and Autism.  So in the case of NAA… I’m going to hold off on giving them any further money towards the safety program until they clarify their stance on vaccination – if it turns out that it really just “remained” on their site, that they no longer endorse anti-vax views and they intended to remove it, fine.  If they’re anti-vax, fine (insofar as coming clean about their views), but they won’t get any further money from me.

Just… folks need to chill out a bit.  That’s all I’m saying.

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