Apparently, in the autism world, there’s a concept of “too big to fail.”
Autism Speaks, apparently, is too big to fail.
Autistic self-advocates and our allies have been speaking very loudly, nearly unanimously (like anything, we won’t all agree, but we almost all agree on this) that Autism Speaks is doing more harm than good in the autism world. Autism Speaks promotes an agenda that speaks to fear and prejudice, affirming that fear and prejudice among supporters and volunteers. It speaks to the first thing that goes through a parent’s mind when they hear their child is autistic: “The world’s ended. Your child has been stolen. You won’t have a life. You’re marriage will fall. You really should have built that bomb shelter.” Okay, maybe not the last one, but they absolutely echo that message – despite plenty of parents disagreeing with it (and a large reason for these feelings is the fear and prejudice that Autism Speaks promotes). But don’t take my word for it – search for “What is wrong with Autism Speaks” and you’ll get plenty of others who feel like I do. I’ll give one link here, from Emma’s Hope Book: What is Wrong with Autism Speaks. But I’m going to assume that most readers of this blog either just did a bit of Googling or read Emma’s link (or any number of other links out there that say the same thing).
So, we’ve been boycotting Autism Speaks and seeking to let their sponsors know we don’t like money going to an organization that makes our life difficult.
In the midst of this, we hear people dismayed that we would not seek to engage and work with Autism Speaks. Well, let me start by saying: we tried. Seriously. Many, many of us tried to engage with Autism Speaks. They do not want autistic people to have a seat at their table, except for a PR role. We’re good for publicity and fundraising, but not actually for coming up with thoughts about what would make our lives better.
But, ignoring that (and this effort continues – should Autism Speaks seek to engage in a meaningful way with autistic people, I’m sure they will have no shortage of ways to engage), there are two main reasons people say we should “engage” and not protest. First, they say “Autism Speaks does good things too.” Typically, they’ll mention local chapters that somehow do something good. Second, they’ll say, “Autism Speaks is the largest, best funded Autism organization and could do a lot of good if they could be pointed in the right direction.”
I’m not going to discuss the first right now, other than saying that while Autism Speaks does occasionally do something good, they do a heck of a lot more bad.
As for the second reason, it’s essentially, “Autism Speaks is big.” Yes, we know that. Of course they are – they are well funded, and spend almost all their resources to grow. Not through helping people, or even research (yes they spend money on research, and, no, autistic people do not oppose research; however, they spend more on salaries and marketing). I’ll add that I’m not comfortable supporting a research organization that can’t understand their own research – but my point is not about research. It’s this idea that if we don’t support this big organization, we won’t have any voice at all.
Let me start by saying that having Autism Speaks not speak would not hurt me or others at all. Nor would it hurt the vast majority of autistic people. In fact, it would allow other organizations that do understand research, that do understand autism, that do care about prejudice and groundless fear, to speak out.
Might doesn’t make right.
Nor is Autism Speaks likely to change course anytime soon. I hope that our efforts to get their attention by letting their sponsors know that donating to Autism Speaks is anything but non-controversial has an impact. I hope Autism does change course. But right now they aren’t doing anything that helps autistic people. Seriously.
We might as well volunteer and donate money to Exxon. After all, Exxon is big. Way bigger than Autism Speaks. And if Exxon wanted to help autistic people, they could do a wonderful job of it with the resources they have. Sure, if you sent a $100 check to Exxon, they probably wouldn’t actually use that to help autistic people. But neither does Autism Speaks. And that’s the point.
If you want to support an organization that encourages discrimination and fear of a minority population, go ahead and mail your check to Autism Speaks for Christmas. But I can suggest a lot of better uses for your money. The first one that comes to mind is ASAN, the Autistic Self-Advocacy Network. Go read about them. They could do a lot of good with your money.
But don’t just give to Autism Speaks. And don’t you dare tell me that I should support them because they are big.