(reprinted with permission from The Autism File)
There’s a new fad in some quarters of the autism world. Frustrated by their lack of progress in pinning down the biology of autism, many scientists have begun planning a retreat, a way to avoid owning up to their failures and to keep doing what they want to do in autism research despite the fact that little of it has been working. Some have been trying out an innovative branding concept. Instead of using the familiar label “autism”, they’re proposing to change the name and the message by adding a single letter, an s at the end of the word. Changing the name of the disorder we know as autism to “autisms” may seem like a small matter. It may even seem intriguing and attractive: a way to recognize the diversity and individuality of our children. But beware of scientists bearing semantic shifts. There is more to autisms than one additional s.
The autisms idea is coming from the highest levels of the research establishment. The man currently in charge of developing a strategic plan for autism research at the National Institutes of Health, Thomas Insel, had this to say in a press conference convened by the CDC on March 6, 2008 on “vaccines and autism.” “We tend to think about this, actually as a group of disorders”, Insel offered tentatively. “Sometimes we talk about autisms rather than autism per se.”
For the autism parent community, there’s a certain appeal in this seemingly modest comment. After all, parents know more than anyone that while children with autism share common behavioral features; they also differ enormously from one another in ways that might be medically important. “Co-morbid” conditions like diarrhea, seizures, and sleep disorders are more common in autistic children, but they are not universally shared in the same way the core symptoms are. So why wouldn’t it make sense to acknowledge, indeed even celebrate, the diversity of the condition rather than adhering to rigid and monolithic nomenclature?
The answer is that there’s a trap in autisms.
And understanding the trap requires understanding the business of science. Specifically, it requires parents to recognize their own interests by understanding how the interests of the producers and consumers of science differ.
As parents, we are consumers of autism science and our interests are clear. We want to see a lot of money spent on autism research, and we want that money spent quickly. Moreover, we want to spend money in two ways: on treatments that can help our children as soon as possible and on the areas of highest potential to prevent future cases of autism. To that end, we need to push for breakthroughs: ways to explain why autism has grown so rapidly and is now so widespread, not why it’s such a puzzle. In addition, we don’t want to see researchers who have worked for years on dead end research projects to be rewarded with even more money, we want the researchers who receive public funding for autism research to feel like they have pressure to produce results; Put differently, we want scientists, the producers of the science that will shape our children’s future to be accountable to us.
The interests of the producers of scientific research are very different. These producers—individual scientists and the departments and universities they work in—have career and business interests in the research money that flows into autism. They need to fund their laboratories and their technical staffs’ salaries and to provide overhead relief back to their departments heads and university deans. For that they need grants and lots of them, the more grants, the better.
For most medical research fields, it’s far better when there’s a large group of motivated consumers who can go out and raise awareness over a disease condition. That can really open up the money flow. This cynical realization appeared most clearly to me in one meeting I attended with a leader of one of the National Institutes of Health. During the discussion he said, “We think autism is an opportunity for us.” Autism an opportunity? It seemed odd to me, but this man was clearly thinking about the business of science. When he thought of autism, his first thought was not the tragedy it represents for the families but rather the funding it could bring to his agency.
To be sure, medical researchers are almost always sincere in their work. Most of them talk with skill about the search for prevention and cure. They usually convince themselves. But there’s a crucial sense in which the interests of producers and consumers of disease research differ. There’s no economic benefit to the research business in getting rid of a disease. In fact, the world’s greatest successes achieve the opposite; the invention of penicillin threw hordes of syphilis doctors out of a job. So while medical research certainly pines for heroic stories of disease elimination, in reality the practicing medical research community needs disease to sustain its access to society’s resources.
Seen in that light, it’s easy to understand why autisms is a much better branding choice for the medical research enterprise than the more mundane concept of autism. After all, it’s all about the business.
Let’s consider three specific ways in which autisms provides supports for the business interests of scientists while also undermining parents’ interests.
Autisms expands the financial opportunity. Tapping into the global emergency we face in autism is good for the research business, but securing grant money is an ongoing challenge for most practicing scientists. Big bets were placed on the genetics research programs and oodles of money spent, but the results have been a serious embarrassment for the science community. In the absence of a new grand project like genome scans, the next best bet is to keep the money flowing, but to keep the distributions in much smaller pieces. Autisms fits that bill perfectly.
Autisms explains the failure of the prevailing theory. If autism is more than 90% heritable and almost entirely genetic, then millions of dollars, thousands of families and a dozen genome scans later, one would have expected to find a gene or two that survived repeated investigation. Sadly for the genetic causation hypothesis, ever more statistically powered studies found nothing of the kind. One would hope that failure like this might have been an opportunity for learning and might force a reallocation of resources towards environmental causation research. Instead, the old school autism scientists have tried to change the subject. If the theory doesn’t explain the disease, then the theory can’t be cast aside, it’s the disease that must be thrown out. But too radical a revision wouldn’t do anyone much good. What’s needed is the Goldilocks solution to modifying the disease: not too much change to disband the research community, not too little change to keep the failure of the theory exposed. Autisms? That sounds just right.
Autisms may even reduce the political influence of the parent community. As so many parents of children with an autism diagnosis learn, there is a point after the initial devastation and grief when a part of our identity becomes associated with the label of autism. Because the surprising impact of the autism label is that it draws families together in a common cause. We understand each others’ suffering and eventually—via different vehicles and over many varied paths—we become comrades in arms. We learn from each other. We pursue common interests. Eventually we organize, albeit not very well (who has time?). But each and every one of us has a powerful motivation; we wake up every day and realize that our most important purpose here on earth is to do something for our children. This passion and drive is the source of our power, especially when forged together by the common bond of a shared identity. Autism.
So for a science community not particularly eager to be held accountable for results and far more interested in setting their own research agenda than to have parents working as advocates to set the agenda for them, autism has been a disease community that has been careening out of control. Those pesky parents are growing far too determined and far too powerful. One useful way to neutralize this kind of power is to divide it. “Your child doesn’t have autism”, a new label suggests, “He just has one of the many autisms.”
From autism to autisms. As parents, we have to recognize how deeply cynical this card shuffle is. And just as we’ve learned to despise what autism has done to our children and families, we need to become mindful of how language can be turned against us.
In short, we need to beware of autisms.