Neurodiversity: A Brief History
The term "neurodiversity" arose in the 1990s, and is generally attributed to the social scientist Judy Singer. Singer’s original intention was to shift the discussion of neurodivergent people around deficits and pathology, to one that openly considered different ways of thinking and experiencing the world. While certain discussions of neurodiversity emphasize the potential exceptional achievement and ability of neurodivergent individuals (e.g. the depictions of autistic savants, or schizophrenic artists), we think that these discussions should not supersede the belief in the inherent worth of neurodivergent life: our right to self determination, emotional and physical wellbeing, and freedom from stigma and judgment. The neurodiversity movement is relatively young, and no movement is completely homogenous. The discussions of neurodiversity presented here are not a complete representation of the views of everyone in the community, but serve as a primer to identify the main principles of the movement.
One of the most popular and accessible conceptions of neurodiversity is described by autistic advocate and academic Dr. Nick Walker. Dr. Walker defines the neurodiversity movement as fundamentally a paradigm shift, calling for a shift in fundamental assumptions and perspectives through which we view neurodivergence. To do so, she contrasts the neurodiversity paradigm and the pathology paradigm, with the pathology paradigm representing the assumptions that society at large uses to view neurodivergence. The pathology paradigm's two fundamental assumptions are:
- There is one "right", "normal" or "healthy" way for human brains and human minds to be configured and to function (or one relatively narrow "normal" range into which the configuration and functioning of human minds ought to fall)
- If your neurological configuration and functions (and as a result, your ways of thinking and behaving) diverge substantially from the dominant standard of "normal" then there is Something Wrong With You
The pathology paradigm manifests in the ways neurodiverse people are treated and perceived in society, in societal stigma, material discrimination, and potentially deeply traumatic interventions to "correct" neurodivergent behavior.
In an example relevant to the scientific community, the way that autism research funding is allocated is reflective of the pathology paradigm: of the $364 million allocated to autism research in 2016, only about 5% ($19 million) went to funding social services for autistic people. Almost 75% of the funds ($270 million) went into funding research into the "biology", "risk factors" or "treatment and interventions" for autism. The disproportionate allocation of funds and public attention to finding a cause, or even a cure, for neurodivergence rather than supporting and improving the quality of life of existing neurodivergent people, is a product of the pathology paradigm.
Conversely, the neurodiversity paradigm posits that:
- Neurodiversity is a natural, healthy, and valuable form of human diversity
- There is no "normal" or "right" style of human mind, any more than 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. race, gender, culture, or sexual orientation). These dynamics include the dynamics of social power relations-- the dynamics of social inequality, privilege and oppression-- as well as the dynamics by which diversity, when embraced, acts as a source of creative potential within a group or society
The neurodiversity paradigm challenges the concept that there is a singular "right" way for the mind to function, and that all minds which do not meet this standard are "abnormal" or "disordered". It aims to help people talk and think about neurodiversity in a way that does not pathologize or stigmatize it, and celebrate aspects of the neurodiverse experience and community.
Aurora Levins Morales, from Kindling: Writings on the Body
It also contextualizes the neurodiversity movement along other social justice movements. This allows neurodiversity advocates to discuss neurodiversity in an intersectional way, examining how neurodivergence interacts with different facets of identity and societal structures. In the vein of the Disability Justice movement, this recognition of neurodiversity as a social class allows neurodivergent people to advocate for themselves not just as individuals, but as a collective.
The philosophy of the neurodiversity movement draws on the social model of disability, which is often contrasted with the medical model of disability. Briefly, the medical model views disability as a deficit within the individual, and seeks to cure, fix or eliminate the disability through the expertise of a healthcare professional. In contrast, the social model makes the distinction between impairment, the functional or bodily limitations of an individual, and disability, which arises from the failure of their environment to accommodate their needs. Society may present physical barriers, such as buildings with stairs but without ramps that curtail wheelchair users' mobility, or societal/attitudinal barriers, such this 2020 report by the Institute of Leadership and Management, which revealed that 50% of the 1156 managers polled would be uncomfortable hiring or managing a neurodivergent individual.
Sunny Taylor, from The Right Not to Work
A common misunderstanding of the neurodiversity movement is that it only understands neurodivergence as a "difference", ignoring its impairments. However, most advocates reiterate that the goal is to de-pathologize neurodivergence, not deny any lived reality, negative or otherwise. De-pathologizing neurodivergence involves engaging with the full breadth of experience of neurodivergent people, pushing back against the stigmatizing and commonly presented narratives of tragedy, suffering and inherent brokenness. Conflict between neurodiversity advocacy and its critics often comes down to the end goal of any intervention or support policy regarding neurodivergent people. Are they explicitly or implicitly meant to eliminate neurodivergent traits or reduce the outward manifestation of neurodivergent behavior? Or are they genuinely in place to improve the lives of neurodivergent people in a respectful way?
Dr. Robert Chapman, from Neurodiversity Theory and Its Discontents: Autism, Schizophrenia, and the Social Model of Disability
The term "self-advocacy" in neurodiversity spaces is founded on the belief that neurodivergent people should have the right to self-determination. Mainstream discussions of neurodivergence often involve the neurotypical people around them, such as family members, healthcare professionals or researchers studying neurodivergence, but rarely give neurodivergent people an equal voice to speak for themselves. Advocacy groups run by and for neurodivergent people often use the slogan "Nothing About Us Without Us", which arose from the disability rights movement, and affirms the need to involve and center neurodivergent and disabled people in decisions and discussions about them.
Historically, the casual dehumanization of neurodivergent people is rife in research and popular culture. Allusions to how neurodivergent people must be from another species, or evolutionarily regressed, or missing some key element of humanity are still present today, alienating and othering neurodivergent people from neurotypical society. Even in the early years of neurodiversity advocacy in the late 80s and 90s, the most wide-reaching writings on neurodivergence were still written for a neurotypical audience. Even the bestselling memoirs from early autism rights advocates such as animal behavior scientist Temple Grandin and writer Donna Williams had forewords from researchers who attested to the "authenticity" of the narrative, and contextualized their experiences in clinical language. Ultimately, the implication was clear: neurodivergent people cannot be fully trusted to articulate their own experiences.
A radical shift in perspective came in the form of a 1993 speech made by activist Jim Sinclair at the International Conference on Autism. Titled "Don't Mourn for Us", it rejected the view of disability as inherently tragic, and still influences the neurodiversity movement today for its unapologetic articulation of neurodivergent experience, independent of parents, researchers or professionals.
Instead of deferring to the common narrative of a disabled person as a burden to their loved ones, Sinclair advocated for parents and caretakers to meet their children where they were, and re-structure advocacy organizations, and indeed, society writ large, to listen to and support neurodivergent needs and priorities instead of making decisions, whether medical, social or personal, on their behalf.
Fundamentally, neurodiversity self-advocates believe that everyone should have the right to personhood, autonomy and respect. In practice, this means that neurodivergent people should be involved in designing research, influencing policy and leading larger discussions about neurodivergence.