What history tells us about autism research, redux
In 2015 Autistica invited me to write a short blog post on lessons from history for autism research. Then they took down their entire blog (was it something I said?). What I wrote remains relevant and then some, so here it is again. There are two minor wording changes. The original (archived here) had no links; I've added a token few of the countless possible.
History tells us about the great importance of standards in human research—standards of science, standards of ethics. History also tells us that segregation harms human beings. The costs and injustices of segregated schools, workplaces, and neighborhoods are well known, but there are other more insidious ways to segregate. Denying a group of people the benefit and protection of standards in research is especially harmful and violates basic human rights. It is segregation at its worst, destructive to human well-being and scientific progress both. Yet in autism intervention research, these lessons have not been learned.
Autistics have long been subject to separate, unequal standards in both research and practice. Claims that standards must be lower for autistics than would be acceptable for anyone else continue to prevail. When it comes to autism interventions, autism-specific low standards have proliferated, by popular demand, and are now nearly universal. History tells us to recognize this as segregation at its insidious worst, but this has not yet happened.
Instead autism organizations and advocacy leaders, including those known for opposing each other, agree when it comes to segregating autistics this way. In their documents, policies, recommendations, and lobbying, they all promote autism-specific low standards—especially in interventions. Ignoring the strong lessons of history, they all support the segregation of autistics from the basic rights and standards which protect and benefit everyone else. Their high-profile disputes are, instead, over which kinds of bad science and bad ethics should be foisted on autistics.
The results are obvious. In non-autism areas, poor quality research and its harms—its waste of resources, its misleading findings—are vigorously condemned. There is recognition that even the best existing research standards are flawed and need always to be improved. But when it comes to autism, standards have instead been lowered or discarded to accommodate the extremely poor autism intervention literature. Poor standards in intervention research are seen not as harmful and wasteful, which they are, but as what autistics need and deserve. Resources have poured not into improving these abysmal standards, but into making the very poor quality autism intervention literature more powerful and influential.
In one influential paper, the authors devised an elaborate system of autism-specific low standards for evaluating intervention research, then suggested extending this segregated system to other developmentally disabled individuals. The authors did not suggest doing this to the typical population, to people like themselves—this clearly would be harmful and unacceptable.
The segregation of autistics from basic standards in research has lowered the bar for standards applied to autistics in other areas: in practice and professional ethics, in public policy, politics, law, journalism, medicine, education, and the list goes on. It has further removed any incentive to fund, conduct, or publish good quality autism intervention research. Yet, the popular effort to impose autism-specific low standards in the area of intervention research can be shown to lack any scientific or ethical foundation.
It is remarkable that while alarming claims about “costs of autism” are everywhere, there has been no concern whatsoever about the high costs, at every level, of autism-specific low standards. What is the way forward? We should listen to what history tells us. We should stop segregating autistics from the basic rights and standards everyone else can take for granted. Then we can see what else is needed.