NEURODIVERSITY 101--October 30, 2009:
Comments by Sarah Pripas
Part I: What is neurodiversity?
“Neurodiversity” is a neologism which refers to both an idea and an organized political movement. As an idea, neurodiversity simply means that variations in human neurology are a natural part of human diversity which need to be accepted and accommodated. I’d like to note that while this term has typically been used to refer to autism spectrum conditions, the idea is by no means limited to just autism. I believe that many other neurological differences, such as AD/HD for instance, also encompass neurodiversity. This panel, however, will be focusing on autism. Neurodiversity as an organized political movement has largely been initiated by autistic people ourselves, though generally with support from parents and other family members who are allied. As a political movement, we have made concerted efforts to get our message out there, countering the message of autism as a great tragedy which permeates our society. We have also been greatly concerned with practical issues geared towards improving the lives of all autistic people: fighting against school abuse, working for better special education services, housing options, and employment services for all autistic people. Autistic adults are virtually invisible in the mainstream autism discourse, and the neurodiversity movement is working hard to change that. However, we wish to show the world that we want to exist in the world as autistic people. Working off of the social model of disability—the idea that disability comes from the intersection between physical or mental differences and social structures which support or marginalize certain types of bodies and minds—neurodiversity hopes to challenge common perceptions of autistic people and work to achieve lasting change. To further understand the social model of disability, I encourage you to read the cartoon on the back of the resource list we have provided. This cartoon explains it much better than I could.
Part II: General Comments
These days, we hear about autism constantly—whether it be concern about vaccines, scare statistics which point to “1 in 100” American children having a diagnosis of an autism spectrum condition, or any number of other points. Largely missing from this social discourse is actual autistic people. Journalists habitually write articles about autism which do not attempt to show the perspective of autistic people. Congress will debate legislative acts such as the ill-titled Combating Autism Act without hearing from any autistic people. Researchers are conducting billions of dollars worth of studies about autism—yet very few of them are stopping to ask autistic people what we think, what our priorities are in terms of funding research, and what the ethics about autism research are. Neurodiversity wants to change all of this, and though we are a nascent movement, I believe we are making strides. Projects like AASPIRE—the Academic Autistic Spectrum Partnership in Research and Education—are working to bring researchers and autistic people—and autistic researchers, such as Steven—together in collaboration. The work of many neurodiversity-positive researchers—such as Michelle Dawson and Dr. Morton Ann Gernsbacher—is among the very best being produced. People like Ms. Dawson and Dr. Gernsbacher are showing us what autism research can be—research into how autistic people think and learn. This sort of research is geared towards helping—not curing or preventing—autistic people, and it is exactly the sort of thing which neurodiversity is working for.
In the public policy arena, pro-neurodiversity organizations are, with our limited budgets, doing our best to improve disability policy. Here I feel compelled to speak about Autism Speaks, an organization which is worth tens of billions of dollars, yet has done comparatively little to address the practical needs of autistic people. (In fact, the organization has actively hurt autistic people through ad campaigns which consistently demonize autistic people.) According to the organization’s own materials, only 4% of its non-overhead expenditures go towards providing services. In contrast, 65% of its funds go towards research. Some of this research is helpful. But much of it is geared towards causation and genetic research—something which does nothing to help actual autistic people, and actually has quite harmful implications in some ways. 28% of its budget goes towards fundraising and so-called awareness campaigns—campaigns which often make autistic people out to be monsters who ruin our families’ lives. So when you donate to Autism Speaks, less than four cents on every dollar actually goes to services for autistic people. Virtually none of it goes to autistic adults. The organization has repeatedly ignored autistic adults’ calls for the organization to have an autistic board member, and to pay attention to adult issues. It has remained very much focused on cause and cure.
In contrast, pro-neurodiversity people concern ourselves primarily with issues of human rights. Today, many autistic people are being subjected to electric shocks and other forms of abuse at the Judge Rotenberg Center in Massachusetts. When such things occur in Guantanamo Bay, many people rise up in justified outrage, yet when disabled people are subjected to similar abuses, society turns a blind eye. But the neurodiversity movement cares; we care about all forms of abuse, restraint, and seclusion which autistic children are routinely subjected to. We care about passing the Community Choice Act, a piece of legislation which Congress puts in perpetual limbo. If passed, this legislation would allow people with all kinds of disabilities to live in their communities, with supports, rather than in institutions. We care about improving employment services for autistic people. Autistic people have much to offer the world, but we often experience difficulties in employment due to problems with social skills and other issues. We envision a workplace in which autistic people have our differences understood and accommodated. We envision an education system which provides equally for all students, regardless of disability. As the Supreme Court found more than 50 years ago in Brown v. Board of Education, “separate but equal” is rarely equal. The neurodiversity movement knows this, and we are actively working to fully fund IDEA, the Individuals with Disabilities Education Act. These are just a few examples of our issues.
On a broader level, our message of acceptance and accommodation is of great importance for autistic people. Without an acceptance of autistic people, we won’t be socially included or integrated into schools and the work force. Our human rights will not be respected. We will not be treated as equals. Our attitudes, arising from a desire to counter the narrative that autism is a tragedy comparable to cancer or AIDS, have broad implications and great potential for social change.
