Neurodiversity: The Movement
The neurodiversity movement has burgeoned through grassroots organization.
Posted Apr 18, 2020
The term neurodiversity was coined by Judy Singer in 1998. A lot has changed in the two decades since that first essay about neurological differences was published in The Atlantic. The neurodiversity movement has burgeoned through grassroots organization among people interested in social change. It's gradually making space for itself in government, research, and education.
As Steve Silberman argues in his book Neuro-Tribes: The Legacy of Autism and the Future of Neurodiversity, “Neurodiversity advocates propose that instead of viewing this gift as an error of nature—a puzzle to be solved and eliminated with techniques like prenatal testing and selective abortion—society should regard it as a valuable part of humanity’s genetic legacy while ameliorating aspects of autism that can be profoundly disabling without adequate forms of support.”
Philosophically, the neurodiversity movement is based on what we might call cerebral pluralism—the idea that each brain is different and some more different than others. Politically, the movement is aligned with dis/ability rights movements and is dedicated to eradicating stigmas associated with neurological difference, or neurodivergence, and in making it clear that a history of medical and social misunderstandings and maltreatment have caused a great deal of suffering and prevented a great deal of thriving among neurodivergent people.
While the movement is strongest in the autistic community, it encompasses a wide array of neurological experiences—including epilepsy, Tourette’s syndrome, mania, depression, hallucination, dyslexia, prosopagnosia, migraine, and synesthesia—and emphasizes the fact that many of these experiences cannot be clearly delineated from each other. No two people with the same diagnosis will experience the world or their bodies the same way; many people diagnosed with a neurological condition will also experience so-called co-morbid conditions. It’s common, for example, for a person to experience both epilepsy and migraine or autism and synesthesia.
- Neurodiversity is a natural and valuable form of human diversity.
- The idea that there is one “normal” or “healthy” type of brain or mind, or one “right” style of neurocognitive functioning, is a culturally constructed fiction, no more valid (and no more conducive to a healthy society or to the overall well-being of humanity) than the idea that there is one “normal” or “right” ethnicity, gender, or culture.
- The social dynamics that manifest in regard to neurodiversity are similar to the social dynamics that manifest in regard to other forms of human diversity (e.g., diversity of ethnicity, gender, or culture). These dynamics include the dynamics of social power inequalities, and also the dynamics by which diversity, when embraced, acts as a source of creative potential.
In the meantime, people living with those actual brains are advocating for themselves. Voices of the neurodiversity movement are proliferating—advocating, debating, insisting, decrying, lobbying, influencing policy, and designing research. It seems inevitable that neuroscience research will face increasing pressure from neurodiversity activists. These activists, after all, are living people who embody the impetus for the research.
As a movement, neurodiversity has so far focused largely on autism, but its purview is expanding quickly. Advocacy organizations of various kinds predate the coining of the term neurodiversity or its emergence as a culture and form of political organizing—including, to name just a few, the Tourette’s Association of America, the Epilepsy Foundation, The American Dyslexia Association, the Depression and Bipolar Support Alliance, the Color of Autism Foundation, focusing on support for African Americans.
While by no means uniform or unified in their ethos or aims, these organizations have advocated for valuing neurological differences and accommodating neurological disability for decades. The neurodiversity movement has emerged as a powerful cultural and political force over the last decade. The amplification of its message in that short time signals its influence in the coming decade, as its proponents continue to lobby researchers, physicians, and policymakers to develop methods that acknowledge the explanatory gap, value difference, avoid normalizing or pathologizing particular brains, and conceive of healthcare as a means to help people rather than correct them—lobbying that will take both grassroots and institutionalized forms.
Video blogger Amythest Schaber is one of the grassroots proponents. They're the author of the blog neurowonderful and the creator of the YouTube Channel “Ask an Autistic.” Their YouTube channel contains relatively short videos—actually ranging from under a minute to 90 minutes—focused on particular topics relevant to the lives of autistic people, their families or friends, and anybody else who may be interested.
Episodes include “What is Autism?”, “What Is Stimming?”, “What Is a Central Auditory Disorder?”, and “What’s Wrong With Autism Speaks?” Schaber’s answers are clear and direct, their delivery friendly and inviting, their topics ranging from intricate aspects of physiology to social controversies. The debut episode was “What Is Stimming?” In it, they articulate their motives: “Right now we’re going into a time where people are realizing that maybe what we thought we knew about autism was the observations, sometimes the inaccurate observations, of neurotypical scientists, doctors, and researchers.”
Schaber explains that “stimming is also known as stereotyped behavior and can be sometimes known as tics.” Schaber offers three reasons an autistic person may stim: self-regulation, sensory seeking, and expression. They describe several types of stimming, including hand flapping, rocking, rubbing a surface, smelling a substance, looking at flashing lights, or spinning in a chair. Stimming, she explains, is a means of controlling or reframing sensory input in ways that “regulate” what’s painful so that it may become pleasurable, or at least tolerable.
In addition to all this, they address stigmas associated with stimming. “When it comes to looking normal versus being able to live and function and be a happy, healthy autistic adult who stims,” they declare, “I would definitely take the latter.” The power of the message is palpable: The assumption of neurotypicality and the stigmatization of neurological difference curtails her health and happiness.
Eleanor Longden is both a grassroots proponent and a professional research psychologist. representing the International Hearing Voices Network, an organization most influential in the United Kingdom and Netherlands but with international reach. The HVN (also known by its affiliate names The Hearing Voice Movement and Intervoice) is perhaps the neurodiversity movement’s closest—and most astonishingly effective—cousin. The Hearing Voices Network was founded in 1990, on the idea that hearing voices is not necessarily a pathological phenomenon or a sign of psychosis. Its mission involves creating community, changing policy, and transforming psychiatric practice.
Longden, a psychologist and a person who hears voices presented a high profile TED Talk in 2012, recounting her harrowing experience with psychiatric medicine—and medication. Longden explains that the HVN objects “to reductionist biomedical mindsets; especially in our approach to voice-hearing. While we acknowledge that hearing voices can cause extreme distress, we consider it a meaningful experience that can be explored and understood (an opportunity for learning and psychological growth, even if the lessons are painful and difficult) rather than just a pathological symptom devoid of context.”
The lobbying of the Hearing Voices Network, along with the movement of people like Longden into the psychology professions, has resulted in a radical revision of diagnostic practices in the UK. In 2015 the British Psychological Association published a report, “Understanding Psychosis and Schizophrenia,” that shifts practices in a direction very much in sync with the HVN’s recommendations. As medical anthropologist Tanya Luhrmann explains, the reports’ authors “say that hearing voices and feeling paranoid are common experiences,” “there is no strict dividing line between psychosis and normal experience,” “antipsychotic medications are sometimes helpful, but that ‘there is no evidence that it corrects an underlying biological abnormality’, and that it is ‘vital’ that those who suffer with distressing symptoms be given an opportunity to ‘talk in detail about their experiences and to make sense of what has happened to them’.”
These are just two among thousands of notable neurodiversity advocates. Ari Ne’Eman is the founder of the Autistic Self-Advocacy Network, appointed by Barack Obama to the U.S. National Council on Disability. John Elder Robison is an autobiographer, policy consultant for the national Interagency Autism Coordinating Committee, and visiting faculty member in The College of William and Mary’s Neurodiversity Initiative, the first university program of its kind. Carly Fleishmann is the nonverbal host of Speechless, a comedic YouTube talk show, and co-author (with her father, Arthur Fleischmann) of Carly’s Voice: Breaking Through Autism.
Neurodiversity blogs include Dani Alexis Rykamp's Neuroqueer, a collective blog for multiple authors “queering our neurodivergence” and “neurodiversifying our queer; Debra Muzikar's The Art of Autism, another collective blog focused on visual art; an Erin Human's illustrated blog, which includes infographics, writing, and graphic design. Cartoonist Ellen Forney has published Marbles, a graphic memoir about her bipolar experience and Rock Steady: Brilliant Advice From My Bipolar Life, perhaps the funniest self-help book of all time. DJ Savarese, the first nonspeaking graduate of Oberlin College, is a prolific poet who co-directed, DEEJ, an intimate, political film about his experience. In his words, "Inclusion shouldn't be a lottery."
Neurodiversity—the concept and the movement—is not without controversy, particularly surrounding autism. In a recent Scientific American article, Simon Baron-Cohen observes that proponents of a more strictly medical model of autism "argue that the severe challenges faced by many autistic people fit better within a more classical medical model. Many of these are parents of autistic children or autistic individuals who struggle substantially in any environment." Fierce debates rage between those who advocate for a medical cure for autism and neurodiversity activists who argue that a world built on neurotypical norms prevents neurodivergent people from thriving—and, in fact, extends a historical legacy of severe medical mistreatment of people whose minds and brains diverge from those norms.
Baron-Cohen argues that "that these viewpoints are not mutually exclusive, and that we can integrate both by acknowledging that autism contains huge heterogeneity." A common mantra in autistic communities echoes this idea: "If you've met one autistic person, you've met one autistic person." The same could be said of any dyslexic, Tourettic, or epileptic person—of anybody who experiences seizures, migraines, or hallucinations.
One thing is clear: The neurodiversity movement has demonstrated—and made public—the talents and cultural contributions of people once dismissed wholesale. In many cases, these talents and contributions emerge directly from the unique neurologies of people like Amethyst Schaber and Eleanor Longden. The evolution of culture, art, science, and politics depends on a diversity of minds and people.