Many descriptions arguably misunderstand the concept of neurodiversity and the framework and actions of the neurodiversity movement, so this chapter seeks to explain them before introducing the core chapters.
The term neurodiversity originates from the autism rights movement in 1998 from Judy Singer on Martijn Dekker’s mailing list InLv, but as the movement has matured into a more active part of a cross-disability rights coalition, the term has evolved to become more politicized and radical (a change noted by a few contributors, especially Dekker in Chapter 3). Neurodiversity has come to mean “variation in neurocognitive functioning” (p. 3) , a broad concept that includes everyone: both neurodivergent people (those with a condition that renders their neurocognitive functioning significantly different from a “normal” range) and neurotypical people (those within that socially acceptable range). The neurodiversity movement advocates for the rights of neurodivergent people, applying a framework or approach that values the full spectra of differences and rights such as inclusion and autonomy. The movement arguably adopts a spectrum or dimensional concept to neurodiversity, in which people’s neurocognitive differences largely have no natural boundaries. While the extension from this concept to group-based identity politics that distinguish between the neurodivergent and neurotypical may at first seem contradictory, the neurodiversity framework draws from reactions to existing stigma- and mistreatment-inducing medical categories imposed on people that they reclaim by negotiating their meaning into an affirmative construct. People who are not discriminated against on the basis of their perceived or actual neurodivergences arguably benefit from neurotypical
privilege , so they do not need corresponding legal protections and access to services. I have observed little serious aggrandizement of neurodivergent people or denigration of neurotypical people, but satire has been misinterpreted (Tisoncik, Chapter 5) or rhetoric misunderstood due to disability-related communication or class differences.
The Diversity in Neurodiversity
Although the people for whom the neurodiversity movement advocates far exceed autistic people, they also fall outside the main scope of the book. Some contributors’ topics do include campaigns directly affecting people with other disabilities, such as that to close the tortuous Judge Rotenberg Center in the U.S. (Neumeier and Brown, Chapter 14) and to pass the Autism/Neurodiversity Manifesto in the U.K. (Craine, Chapter 19), yet the movement remains led by autistic people. Mainly though, the scope of the movement remains unclear; at a disability studies conference I asked participants how they felt about minimum criteria for eligibility within it, but they felt uncomfortable posing limits . A woman suggested her multiple sclerosis should qualify; indeed, coverage of people with not only chronic illnesses but also primary sensory disabilities like blindness and psychiatric conditions like schizophrenia remain unclear . One issue may be the importance of the cure issue to the movement; for example, an autistic neurodiversity activist advocates for acceptance for autism but a cure for epilepsy (which she sees as separate from her sense of self and understands as potentially fatal). Such neurological conditions fall within the broader disability rights movement and deserve basic rights accommodated, such as, arguably, policy to ban flash photography in public places that could trigger seizures in people with photosensitive epilepsy . The primacy of biology to the movement seems clear due to the neuro- in neurodiversity, and debates as to whether relevant neurodivergences must be neurodevelopmental or can be acquired environmentally
or in adulthood have taken place in the U.K. . Conditions such as schizophrenia fall within another identity-based socio-political movement (the mad pride movement, and while the neurodiversity movement may help provide a bridge to the disability rights movement, many adherents do not view themselves as disabled . More importantly and practically, campaigns to attribute these conditions to the brain have backfired, likely because the public often associates them with violence and thinks brain-based conditions are more difficult to treat [8, 9]. Ultimately, book contributors did not exclude any particular conditions from the domain of the movement, and the right to self-determination offers the opportunity for other people to identify and organize within the movement.
While some activists say neurodiversity refers simply to a biological fact of this variance as opposed to the movement [10, 11], contributors to this volume—as aware autistics do generally: see Preface—suggest the term implicitly refers to a tenet of inclusion based on universal rights principles, with an emphasis on those with neurological disabilities. This includes aspirations of full inclusion in education, employment, and housing; freedom from abuse (e.g. abolition of seclusion and both chemical—that is, overmedication to control behavior—and physical restraint); and the right to make one’s own decisions with support as needed. Contributors evoke “the compassionate, inclusive flavor of the word” (Seidel, Chapter 7) and “human rights concept” (Greenberg, Chapter 12): “the specific premise of neurodiversity is full and equal inclusion…Neurodiversity is for everyone” (daVanport, Chapter 11). Buckle (Chapter 8) clarifies that this inclusion involves interaction between diverse groups even in settings prioritized around the needs of a particular group: neurodiversity “means having NTs [neurotypicals] in autistic space as much as it does autistics in NT space”. Raymaker (Chapter 10) explains both parts of the compound word: “Neurodiversity, to me, means both a fabulous celebration of all kinds of individual minds, and a serious, holistic acknowledgement of the necessity of diversity in order for society to survive, thrive, and innovate”, which as Garcia (Chapter 17) states requires that society “welcome neurodivergent people and give them the tools necessary to live a life of dignity”. Inspired by the principles of other social justice movements, the neurodiversity movement recognizes intersectionality (how neurodivergent people’s disadvantages are compounded by other types of social oppression) beyond cross-disability solidarity, such as race (see Giwa Onaiwu, Chapter 18), gender including gender identity (see daVanport, Chapter 11), and class (such as the call by Woods  for universal basic income).
Like the far-reaching concept of diversity, the neurodiversity movement as applied to autism functions inclusively, in that activists include non-autistic people as allies, and it accepts and fights for the full developmental spectrum of autistic people (including those with intellectual disability and no or minimal language). Marginalization of non-autistic people by non-autistic relative-led autism organizations catalyzed the movement (Pripas-Kapit, Chapter 2; ). Thus it seeks to help families with advocacy for acceptance, understanding, and support that can positively impact people across the autism
spectrum and their parents . Celebratory acts for parents toward autistic children such as learning to speak their child’s language and even accepting autism as part of their child’s identity, and ameliorative acts like parents teaching their child adaptive skills to cope in wider society, both show nearly universal support among the autism community—including “pro-cure” parents and “pro-acceptance” autistic people , yet many of the more powerful parental organizations have behaved in dehumanizing and polarizing ways toward autistic people, such as using fear and pity as fundraising strategies and seeking an end to all autistic people regardless of their preferences (daVanport, Chapter 11). They have appropriated self-advocacy by using language such as “families with autism” (whereas if anyone “has” autism, autistic people do). They have also claimed autistic people cannot advocate for public policy affecting their children (even though some autistic activists themselves have intellectual disability, language impairment or no speech, epilepsy, gastrointestinal disorders, self-care needs such as toileting or daily living, meltdowns, etc., or their children do: [15, 16].
The Neuro- in Neurodiversity
While the neurodiversity movement generally views autism as natural and essentially innate, despite the inability of clinicians to identify it from birth, this viewpoint transcends politics despite its utility in activism. Autistic people tend to view autism as arising entirely from biological causes, with no evident influence from the movement . This may occur both because autistic people likely cannot remember their life before autism becomes diagnosable, and because autistic people more often conceive of and describe autism from the inside, referring to internal processes such as thoughts, emotions, and sensations rather than behavior . This conception of autism privileges lived experience, and complements autistic activists’ arguments that underlying differences and difficulties persist despite coping mechanisms that may behaviorally “mask” autism, which have support from neuroscientific and other research . Such a phenomenon helps autistic people counter the attack “You’re not like my child” from parents; see the group blog We Are Like Your Child (http://wearelikeyourchild.blogspot.com/). It also facilitates a neurological kinship of sorts with fellow autistic people, helping us to emphasize within-group commonalities to develop a sense of community despite variability in how our behaviors present, and to argue for our rights based on what Silverman  calls “biological citizenship”. An inside-out viewpoint of autism also helps advocates of neurodiversity explain adaptive reasons why autistic people engage in atypical behaviors, such as “stimming” (e.g. body rocking and hand flapping: Kapp et al. ; Schaber .
Importantly, brain-based explanations facilitate the movement’s compatibility with alliances with non-autistic parents. They reject a role in caregiving for causing autism, absolving parents of the responsibility scientists and clinicians assign(ed) to them when Freudian psychogenic theories have dominated (as they still do in France and to a lesser extent in countries such as Brazil). This may reduce parents’ aversion toward listening to neurodiversity advocates describe helpful parenting practices. Many of the more successful “therapeutic” approaches involve educating others to respectfully understand autistic people’s differences, such as teaching responsive caregiving tactics to parents that require them to “learn to speak their child’s language” and communicate on their terms . Researchers developed these techniques based on successful positive parenting practices in general . A model that allows more for environmental
contributions to autism’s causation might look like parent-blaming, sparking resistance, and stifling progress. Moreover, biological explanations argue against environmental
toxins as a risk factor for autism, helping to direct parents away from cottage industries based on rejected and unproven theories that offer dangerous “treatments” like heavy metal-injecting chelation therapy, chemical castration (Lupron therapy) bleach enemas, and vaccine avoidance (amid other expensive or at least ill-conceived “interventions”). Instead, biological explanations led by the neurodiversity movement help to raise ethical concerns
about the basic scientific research that dominate autism research (such as the possibility of eugenics; see Evans, Chapter 9).
Interaction with the Medical Model
Although many claim that the neurodiversity movement simply supports the social model of disability
and opposes the medical model, neurodiversity activists instead acknowledge the transaction between inherent weaknesses and the social environment [23, 24]. The social model of disability distinguishes between the core impairments inherent to medicalized conditions and disability caused by societal barriers (e.g. lack of assistive technology and physical infrastructure to enable someone with a mobility disability to move where they want to go), which for autism especially include social norms that result in misunderstandings and mistreatment . One of the social model originators Mike Oliver  explained that he never advocated it as all-encompassing or intended it to replace the individual (medical) model
SeeSeemedical model, of disability
, but to serve as an academic-political tool to help empower disabled people by emphasizing attention to the social obstacles that unite us; that it has certainly done. Yet the impairment that the model separates from disability may certainly add to any individuals’ struggles. In practice this means that the neurodiversity movement begins with its goal of quality of life, which includes but surpasses adaptive functioning (e.g. self-determination and rights, well-being, social relationships and inclusion, and personal development: Robertson ; see also Tsatsanis et al. ), and works backward from there to address the individual and social factors that interact to produce disability. In contrast, a “pure” medical model approach would assume an individual’s “symptoms” (behaviors or traits) directly and specifically cause dysfunction or disability, and work to disrupt this linear relationship by preventing or curing the condition. Yet the disability rights movement has already helped enshrine access (e.g. reasonable accommodations) and non-discrimination into law, and medical practices have gradually changed to allow more patient and client autonomy . Indeed, social and medical models have moved toward one another over time .
The neurodiversity movement’s opposition to “curing” autism has produced misunderstandings, such as mistaken assumptions that it attributes all challenges to social injustices and rejects interventions to mitigate them. While the movement disagrees with certain principles, means, and goals of interventions, with those caveats, it does support therapies to help build useful skills such as language and flexibility. It opposes framing these matters in unnecessarily medical or clinical ways; arguably all interventions that have a scientific evidence base for truly helping autistic people’s core functioning involve active learning (by the autistic person or others), and therefore one might describe them as “educational”. It recognizes that some behaviors associated with neurodivergences like autism can serve as strengths (such as interests), as coping mechanisms for underlying differences that can prove challenging at times (such as forms of stimming like hand flapping and body rocking, which help to self-regulate and communicate overpowering emotions, among other functions: Kapp et al. ; Bascom ), or as inherently neutral differences (such as an apparently monotone voice or a preference for solitude: Winter .
While all social movements have more radical left wings, arguably the organized, politically mobilized autism rights branch of the neurodiversity movement largely practices critical yet reformist pragmatism rather than revolution. The movement in some ways supports a Western biomedical model more than autism’s medical establishment and certainly more than autism’s organized cure movement. For example, the neurodiversity movement’s
SeeAlsoSeeAlso“anti-cure” perspective on autism; “pro-cure” perspective on autism
framework conceptualizes autism itself as purely biological, as opposed to resulting from dynamic genetic-environmental
interplay (as the mainstream autism field believes and as most research suggests) or at least in part from toxins in the physical environment (as many “pro-cure” parents and their advocacy organizations have believed). Neurodiversity activists support traditional medicine for preventing and treating ill health, such as vaccines to prevent infectious diseases and (with the individual’s consent) psychotropic medication to treat anxiety and depression (see Murray, Chapter 4), whereas beliefs in the likes of false and discredited vaccine-autism links have energized radical pro-cure activists, pseudoscience, and fringe medicine.
Neurodiversity supporters cling essentially to autism’s diagnostic criteria when challenging even mainstream critics, as we support acceptance of official autism domains of atypical communication, intense and “special” interests, a need for familiarity or predictability, and atypical sensory processing, yet distinguish between those core traits and co-occurring conditions we would be happy to cure such as anxiety, gastrointestinal disorders, sleep disorders, and epilepsy. We, as do all of the authors for this book and the latest revisions of autism’s official diagnoses (; https://icd.who.int/), generally support a unified conception of the autism spectrum. Understanding and production of structural language now fall outside of autism’s criteria (as a separate communication diagnosis), and neurodiversity activists have likewise supported efforts to expand access to language and communication but do not regard this as making someone “less autistic”, unlike arguably most autism advocates. Autistic neurodiversity activists have defined critical autism studies not in terms of being critical of autism’s existence (unlike many non-autistic thinkers outside the movement), but of the power dynamics that marginalize autistic scholars, pathologize autism, and overlook social factors that contribute to disability in autistic people . While we support moving to an alternative identification system that recognizes autism’s nuances (; Kapp and Ne’eman, Chapter 13), such as strengths that can aide or add difficulties to autistic people’s lives depending on myriad factors , the often fractious autism community united around the need to protect autistic people’s access to diagnosis
SeeAlsoSeeAlsodiagnosis/Diagnostic and Statistical Manual (DSM)
because of the practical services and supports medical classification can provide. While the psychiatric and clinical establishment sharply criticized the American Psychiatric Association’s Diagnostic and Statistical Manual of Mental Disorders (DSM) for adding and expanding most diagnoses (increasing medicalization of everyday problems) in its latest revision (DSM-5) or for lacking validity , the neurodiversity movement’s leading organization the Autistic Self Advocacy Network (ASAN) worked more closely with the DSM-5 than any other in the autism community to protect access to diagnosis (Kapp and Ne’eman, Chapter 13).
The neurodiversity movement’s approach holds autistic and neurodivergent people responsible not for the origin of our problems (social barriers exacerbating biological challenges), but for leading the effort to solve them. This position—responsibility for the “offset” but not “onset” of problems—aligns with the compensatory model of helping and coping according to an analysis  of a classic theoretical paper . Other identity-based social justice movements such as the civil rights movement share this approach, which Brickman and colleagues viewed as arguably superior because it encourages people to seek help (because it does not blame people for problems), yet actively exert control over their lives. Yet while they say on page 372 that the model “allows help recipients to command the maximum possible respect from the social environment” and enables mobilization, people oriented this way put enormous pressure on themselves to solve problems they did not create, risking distressing strain. Indeed, campaigners in this book noted the financial and sometimes emotional sacrifices made for their activism (Murray, Chapter 4; Seidel, Chapter 7; see also Pripas-Kapit, Chapter 2). Movement activists do not think neurodivergences like autism excuse abusive behavior, and call it out (especially in intersectional ways to protect more disempowered community members), such as educating autistic men about consent in sexual relationships (Garcia, Chapter 17; ). In contrast, the medical model holds people responsible for neither the causation of nor the solution(s) to their problems, making them dependent , albeit medical and clinical clients in general have become increasingly empowered in practice .