DW_a_mom wrote:
johnrobison wrote:
There sure is a lot of controversy about Alex accepting underwriting support from Autism Speaks. I know many of you probably think they are calling the shots or somehow influencing what Alex and my son put together, but they are not. Alex and Jack do their own stories their own way.
Why don't you consider giving them a chance, and see where it leads.
I think what it comes down to, at least in part, is that Alex never talked to the community here about it. "His" community. If he took the time to explain his thinking to the members here, they might disagree, but they would at least have the information. It all gets worse when one fails to give the information and allows everyone's imaginations to fill it in instead.
As I posted before, I remain skeptical of the organization, but am glad they are taking a few steps that show they are, at least, listening. We HAVE to work from that organization from the inside, because it is NOT going away; that is evident. I wish you success in having a positive influence from your position with the organization, and am sure you will encounter frustrations, as well; but it is a start, and I am really thankful that you are taking the time to converse with our membership and explain what is going on. A little communication tends to go a long way.
Again, thank you for taking the time.
I also articulated my other reasons for working with them and trying to influence their course a bit more to the favor of autistic people.
There's a real strong perception that they are some evil force but that's just not true. Whatever you may think from what you read, I see the key people in person and I find a lot of common ground. Enough that I want to work together, not fight. Alex and my son see the same thing, and frankly, I think that comes across in their interviews with Peter Bell and Geri Dawson.
We've made friends with Peter's son Tyler, who is 17 with significantly greater verbal challenges than either me, Alex, or Cubby, and that's given us an understanding of why parents with more disabled kids may feel very different from us. We should allow both points of view in our community because there is a wide range of affect. The "victim mindset" is a non-starter for me, but I have to accept that some people, for whatever reason, cannot outgrow that world view. Luckily, I do not see that in the Autism Speaks staff I work with, or the scientists I serve with on the boards.
Please be assured that Alex, Cubby, and I are not subverted or bought in any way. Let's see where cooperation leads us.
To be honest, I have very little idea who you actually are, and thus have no idea how much time you might have spent reading the various threads on WP over the past few years. However, it seems HIGHLY unlikely that Alex could possibly have missed the gallons of sheer vitriol that appear in EVERY thread where Autism Speaks are mentioned, which includes all the threads where they get brought in as a kind of boogeyman, regardless of the original subject of the thread. Here, they get so many negative mentions it would be entirely possible to create a new internet "law" that in any thread about Autism, Autism Speaks will get lambasted before it reaches its end. The same applies on the IRC chat as well, where Autism Speaks gets treated by at least half of the clientele as a dirty word. Its not as if its a secret, or tucked away on some thread nobody ever read. The "I am Autism" video threads alone are a lesson in sheer hatred/fear. Alex was either being extremely naieve or demonstrating a terrible lack of knowledge about the users of his own forum. (I am of course being charitable, it could I suppose just be a lie, but some faith in humanity is always nice.)
Autism Speaks in the UK are barely worth noting as existing, in whatever form they choose to brand themselves. (The fact that they choose to operate under a different name is indicative of how much bad press they generate.) so its activities have far less effect. A move towards more positive roles would be welcome though.
13 Sep 2010, 1:04 am
