Controversy #1: Supporting Autism Speaks

Autism Speaks is the self-appointed figurehead for autism, similar to what Susan G. Komen Foundation is to breast cancer. Even if you haven't been personally touched by autism, you have probably heard of "Light It Up Blue" which is is Autism Speak's campaign for World Autism Awareness Day on April 2nd. And similar to the Komen Foundation, there is controversy. The Autistic Self-Advocacy Network (ASAN) is an organization comprised of autistic adults whose slogan is "Nothing About Us Without Us." They wrote an impassioned open letter to the supporters of Autism Speaks laying out their concerns. They describe Autism Speaks's deficiencies much better than I can, though I will highlight four of the main concerns:

1. Semantics matter. From their "About" page: "Autism Speaks has grown into the world's leading autism science and advocacy organization, dedicated to funding research into the causes, prevention, treatments and a cure for autism; increasing awareness of autism spectrum disorders; and advocating for the needs of individuals with autism  and their families." (emphasis mine) I could understand the phrase I italicized above if "cancer" was the condition listed instead of autism. Unlike cancer, autism cannot be excised from a person, nor do many consider it to be a disorder that needs to be "cured" since it's not fatal. Using this type of vocabulary further stigmatizes those with autism spectrum disorder (ASD).
2. Eugenics. Autism Speaks is funding research to determine whether an unborn baby has ASD. With their disease-esque rhetoric, it's not a leap to postulate that there will be a test available in the not-too-far future, taken during pregnancy, to determine whether or not a baby is inclined to have autism. Given that in the United States 67% of Down's Syndrome babies are aborted after a positive amniocentesis or CVS, it's not a reach to think that something similar will happen with ASD babies given the opportunity. While it's good to try to understand the disorder better and get interventions as quickly as possible, we should consider the ramifications of some of the research they are funding.
3. Lack of autistic adults in leadership. There are no autistic adults in senior leadership at Autism Speaks. They claim to be advocating for individuals with autism, yet they have no autistic individuals helping to form policy or give perspective and input at their highest level? The ASAN that I mentioned above was formed because Autism Speaks was not speaking on behalf of autistic adults. 
4. Finances. Of an almost $100 million budget, only $4.6 M goes to families with autistic children in the form of "Family service grants and awards" which is 1/3 of the budget allotted for scientific grants. 50%, goes towards advertising, at least some of which I'm assuming is for "awareness." 

One of the comments on this article "Speaking Out Against Autism Speaks, Even if It Means No Ice Cream" was interesting to both me and Chris. 

Seth Bittker

 Connecticut 1 hour ago

Any reasonable analysis of the medical literature on autism shows that those who are diagnosed with autism typically have unusual biochemistry. These biochemical abnormalities include: sulfation deficits, high oxidative stress, vascular damage, elevations in auto immune markers, dysbiosis, elevations in monoamine neurotransmitters. This biochemical gestalt is not healthy. As a result most with autism suffer with health consequences of these issue that go beyond the purely neurological effects and a large subset experience physical pain from these effects.

While a cure for autism is unrealistic, it would seem any organization which funds research in an attempt to understand and ameliorate aspects of this dysfunctional biochemistry is worthy of support. While I do not agree with some aspects of what Autism Speaks does, they do fund some research on autism biochemistry and for this I support them. I hope that concerns over neurodiversity do not make it more difficult to raise funds for research in these area which can lead to improvement in people's lives.

Now, I don't really know what he's talking about with regards to the biological conditions, but if this is true, I do see benefit in researching and ameliorating these sorts of physical conditions. But I reject the notion that our goal is to eradicate autism from Elias's brain and that the optimum outcome is that he is "cured." If that's the case, the majority of families will be striving for something that only a few people obtain: a reversal of the diagnosis.

There is a deeply interesting (and very long) article from the New York Times last year entitled "The Kids Who Beat Autism." It intersperses the stories of current teenagers who were diagnosed with autism as children and now have been declared no longer autistic by their diagnosing physicians with research studies that seem to indicate that a small percentage of children diagnosed with autism seem to shed their symptoms in spite of being placed on the low-functioning end of the spectrum at diagnosis. These children tend to have higher nonverbal IQ's and earlier and more intensive interventions, though that is not true of all of the children. Unsurprisingly, higher incomes and increased parental involvement were also positive factors. However, this population is only a fraction of the children diagnosed.

If you were to ask me if I would want Elias cured of autism, I honestly don't know how I would answer it. In one sense, yes, I would want to spare my baby the difficulties and frustrations that autism will bring him. But, and this is a large BUT, if it were to change his personality, behavior, the way in which he sees the world in any way, I would say no. Autism is a pervasive disorder that touches every aspect of who he is. Chris's response when I asked him a variation on this question was "I think you want him to reach his potential, as you want for the other two kids." And that's it. I want Elias to reach his potential and to follow God's plan for his life, regardless of his diagnosis. I'm far less concerned about curing him than I am about giving him opportunities to maximize his gifts and abilities.

In short, while I support scientific research into ASD, I more strongly support initiatives that help people on the spectrum to live independent and fulfilling lives. I'm not sure that those priorities are in line with Autism Speaks given how they spend their money, as well as their rhetoric and propensity for hyperbole and fear-mongering. Of course, I'm speaking from the perspective of a parent whose son is verbal and progressing. I may feel differently if he was non-verbal, self-injurious, and aggressive. However, even if my son were more low-functioning, I would hope that an organization that claimed to speak for him would also be compassionate and use adjectives that encourage and not dehumanize him.