Get Real: Autism Speaks is Mostly About Eugenics
Autism Speaks (and its less obnoxious sister the Autism Science Foundation) are mostly about eugenics.
That's what genetic research focused specifically on autism is about: the development of prenatal tests that will enable parents to abort fetuses that are likely develop into autistic people.
I have mixed feelings about such tests. I do not oppose them, both because I think they are inevitable and because I think they will prevent many children from being born into homes where they will never be wanted.
But, of course, it hurts my feelings when I realize that most people would rather pour millions of dollars into creating a test so that people like me will not be born than invest the same money into supporting those of us who are already here.
But they would, or at least that's what they do.
I have found it harder and harder to writer about autism research. I support research into education and effective support for autistic people, like the work of Rosalind Picard. (Note: I've taken the time to clip the videos in this post to the relevant sections because I want very much for you to watch them.)
I would like to see more money spent on research to develop technology that will help people with autism to communicate and live happier lives.
But I don't know if medically based "autism research" is a good idea at all.
One of the most important points Ari Ne'eman made, both in his keynote address at the AASCEND conference last weekend and in conversations we were both part of during the conference, is that people with autism and our families are best served by avoiding thinking ourselves as a niche community with needs that are completely distinct from the disability community in general.
It makes no sense for the government to simultaneously fund the Combatting Autism Act, spending millions of dollars to research autism, and to cut Medicaid, which provides services to real autistic people.
But that's what they are doing.
And let's face it-- if Autism Speaks cared about providing services to people with autism and our families, they would be putting the same kind of political muscle into opposing cuts to existing services, both in Medicaid and in education, that they put into autism-specific legislation.
But what they care about is the development of tests that will keep parents from having to go through all the pain of having an autistic kid in the future.
Autism Speaks and the Autism Science Foundation are not run by stupid or ignorant people. The people in charge of the science at both organizations have to understand the implications of what David Eagleman is talking about here:
He makes the analogy that trying to understand what is really happening in the brain with our current technology would be like someone in a space shuttle trying to figure out what is happening on earth. We are beginning to be able to see what is happening in the brain, and that is very exciting. But to be able to truly understand how the brain functions, we will need to be able to see the microcircuitry level.
We are probably decades from being able to do that. And no one knows how many years it might take to develop effective treatments for something like autism, which need to happen on that level, provided that it turns out that such treatments are possible. Scientists who need funding for autism research are under the same sort of pressure that Eagleman says lawyers and psychiatrists are under. They are either deluding themselves into believing that we are infinitely closer to understanding things than we actually are or deliberately deceiving their listeners.
To try to do autism-specific things before we have the general understanding of neurology we need is inviting abuse-- it's stabbing around at the brain with your eyes closed. I fear that things like what happened to Charles Nelson Reilly's Aunt Lily will happen in the future, because people refuse to learn that the lessons of the past apply to autism, too:
If you really believe that genetic and neurological research is the best way to help people with autism, you would be much better off donating to an organization that sponsors general research into those topics than autism-specific research. It makes much more sense to try to speed the fields along in general, to develop technology that will make real research into autism possible than, to donate to Autism Speaks or the the Autism Science Foundation.
Unless your real goal is eugenics. A test similar to that which exists for Downs, which would allow the majority of people with autism to be aborted as fetuses, is not unrealistic. The good thing about self-advocates being vocal about how hurtful it is for those groups to talk about eugenics is that they've pretty much stopped doing it. The bad thing is that that only means they are hiding their real goals.
They have not changed.
They will not change.
Autism Speaks will never be able to treat people with autism as fully human because their ultimate goal is for us not to be around anymore. Because I don't think it's especially realistic to create a prenatal test that will let you know how disabling the autism of an individual fetus is likely to be.
They can't invest too much in making the world a better place for people with autism, because if we are less obviously burdensome, people will be less likely to abort us. Creating meaningful supports for us actually works against their chief mission.
Letting us be seen as worthwhile and fully human in the media also works against their core goal.
They have to continue to send the message that having a kid with autism is a fate worse than death because they need to create an atmosphere in which people who choose to abort fetuses because they are likely to develop autism are not stigmatized, in which paents who make that choice feel good about themselves.
Again, I do not oppose these tests.
What I oppose is the pretense that Autism Speaks and the Autism Science Foundation are not mostly about developing them.
Don't give them your money, unless you think the best way to support people like me to is try to make sure that we will not be born.