Neurodiversity

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Author: Dana Lee Baker
Editor: Michael Shally-Jensen
Date: 2013
Mental Health Care Issues in America: An Encyclopedia
Publisher: ABC-Clio
Document Type: Topic overview
Pages: 8
Content Level: (Level 5)

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Neurodiversity

Dana Lee Baker

The term “neurodiversity” has two definitions. The first refers to perceived differences in the human brain observed as significant in a given social, political, legal, economic, or cultural context. This use of the term describes a human characteristic; after all, diversity in the population depends on the identification of multiple subgroups (Baker 2011). The second definition, the one that is the main focus of the present entry, refers to a political and social movement dedicated to advancing the human and civil rights of individuals with neurological differences. Formal articulation of neurodiversity in this sense has been led primarily by autistic self-advocates (see, for example, the Autistic Self-Advocacy Network).

Neurodiversity, then, is a natural condition of humanity related to, but nevertheless distinct from, neurological difference. Whereas neurological difference originates in the biological reality that no two brains are identical, neurodiversity involves a choice to recognize differences as a fundamental component of identity and, often, to deliberately identify with a particular neurodiverse group or community (Baker 2006).

Although a neurotypical (or “normal”) brain is as much a social construction as s a neurologically different one, differences recognized as sufficiently distinct from the accepted norm tend to be associated with a multitude of difficulties for individuals. Most of these difficulties result from factors external to the individual, particularly social, economic, cultural, and political factors (Griffin & Pollak 2009; Grinkler 2008). Moreover, some neurological differences constitute a threat to individual comfort or survival. As a result, each individual retains the right to consider a significant neurological difference as personally undesirable and to pursue palliative care or a cure. Given this, although objections to the use of “people first” language (e.g., in defense of individuals with disabilities) are rightly raised by those embracing neurological difference as a core, positive element of identity (Ortega 2009), use of such language in law, policy, and academic discourse can be considered as a means to include the expressed interests of all people with neurological differences.

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At the group level, neurodiversity describes an inherently positive characteristic and a natural experience (Armstrong 2010; Griffin & Pollak 2009). Traditional classifications drawn from the fields of medicine and education are employed to describe neurodiverse groups. For example, categories and conditions defined in the American Psychiatric Association’s Diagnostic and Statistical Manual of Mental Disorders (DSM) and in the World Health Organization’s International Classification of Functioning, Disability and Health (ICF) are routinely employed in discussions of neurodiversity. Similar to discussions about other forms of diversity, much of the discourse on neurodiversity focuses on conditions understood as connected with minority groups that have historically been excluded, ignored, oppressed, or otherwise systematically disempowered. Examples of such conditions include autism, attention deficit hyperactivity disorder (ADHD), bipolar disorder, and dyslexia (Armstrong 2010). Political activity surrounding neurodiversity involves efforts to restore basic human rights, promote acceptance of neurological difference, and reduce the effects of neurotypical privilege wherever possible (Ortega 2009).

Origins and Development of the Concept

The history of discrimination against those with disabilities is less well known than the histories of oppression toward other groups. While members of the general public are exposed to information about discrimination against racial and ethnic minorities, religious groups, and women, for example, information about disability is largely absent from public education programs and general public discourse (Baker 2011). Justification of discrimination against individuals with disabilities is, unfortunately, not yet fully taboo.

The disability rights movement grew steadily over the course of the twentieth century, resulting in significant changes in public policy such as deinstitutionalization, or the move toward community mental health, and the creation of rights-based, inclusionary special education. The neurodiversity movement is part of the larger disability rights movement. For example, the mission statement of the Autistic Self-Advocacy Network (ASAN) ends with one of the main disability rights mantras, “Nothing about Us, without Us!” (http://www.autisticadvocacy.org/ ).

The term neurodiversity began appearing in the media, on the Internet, and in gray literature (i.e., technical reports, working papers, policy statements) in the late 1990s, usually with reference to autistics. By the latter half of the first decade of the twenty-first century, the concept was being examined and articulated in the academic literature. Though use of the term in law and political discourse remains sparse, by 2011 it had appeared in legislative testimony and court proceedings in several countries, including Australia, Canada, France, Great Britain, and the United States. In the United States, one of the catalytic events of the neurodiversity movement was the so-called ransom notes campaign of 2007, in which poorly conceived advertisements seeking to raise awareness of childhood neurological and behavioral health issues represented autism, Asperger syndrome, and other conditions as roughly equivalent to being kidnapped by an outsider (Kaufmann 2007). A protest led by Ari Ne’eman, the president of ASAN, led to a cessation of the campaign and expanded awareness of questions of rights associated with neurological difference (Kras 2009). A key concern of this campaign was the unapologetic portrayal of autism and Asperger as “totally debilitating” (Kras 2009). By mid-2011, “neurodiversity” had been used in a cover story in the New York Times, lost its designation as a neologism on Wikipedia, been taught as a college course at a research university, and served as a theme for an academic symposium.

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Half Measures

Mike Stanton, an autism activist, reports that at a recent International Autism Conference in London he heard a talk by Professor David Amaral, a psychiatrist heading the MIND Institute at the University of California, Davis. At the conference Amaral told the story of a young man with Asperger syndrome who, when asked what he would do if a pill were developed that eliminated autism symptoms, replied that he would take half the pill.

As Stanton continues,

I think this illustrates a real difference within the autism community. There are many who pathologize autism as a disorder that afflicts an otherwise healthy individual. If you hold this idea you naturally look to understand the causes of autism in order to find that “autism pill.”

The idea of Neurodiversity was developed by autistic people in opposition to the pathologizing model. According to them autistic people are not disordered. They have a different sort of order. Their brains are differently wired. They think differently. They do not want to be cured. They want to be understood.

—Editor

Source: Mike Stanton, Action for Autism, http://mikestanton.wordpress.com .

Boundaries of the neurodiversity movement are debated. At the time of this writing, some continue to object to use of the term expanded beyond the experience and rights of autistics (Jaarsma & Welin 2011). This concern raises fundamental questions of the diversity component of neurodiversity, which will likely be more fully addressed in coming years. Modern concerns also surround even more basic issues of respect (Ortega 2009). For example, words describing neurological differences continue to be employed as colloquial insults, and adverbs or adjectives intended to add a negative connotation (such as “autistic economics”) appear in the popular media and elsewhere (Jurecic 2007).

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Finally, debate remains as to whether or not neurodiversity can be attributed to differences in neurology or to psychological differences (Ortega 2009). Despite stunning recent progress, our understanding of human neurology is still in its infancy. Even whether or not a human brain should be considered a single entity or a kind of “team of rivals” remains unknown (Eagleman 2011, 109). Many neurological differences continue to rely on behavior-based diagnoses rather than on actual knowledge of underlying physiology. While such fundamental gaps in understanding are likely to continue for the foreseeable future, more relevant from the perspective of the politics of neurodiversity are the implications of this form of diversity as a characteristic of community (Baker 2011).

Controversies and Open Questions

All expressions of human diversity involve various controversies and open issues. The concept of neurodiversity is no exception. A brief discussion of some of the ongoing controversies and open questions follows. Many of these are structurally similar to (if not identical to) conversations surrounding other forms of human diversity.

Right to Claim, Right to Pass

One such complication involves the (public) identification of individuals with neurological differences. One question in this area is whether neurodiverse groups have the right to claim individuals with neurological differences who have not publically identified. Naming particularly successful public figures in one’s ranks has obvious benefits in terms of public acceptance and possible advantages in achieving policy goals. As such, the claiming of well-known individuals, both living and dead, has occurred. Whether (and under what circumstances) it is appropriate to speculate on the neurological difference of another individual remains a somewhat unsettled question, one similar, for example, to the question of “outing” others when it comes to diverse sexualities.

A similar question surrounds the issue of whether an individual with a neurological difference has a right to “pass” as neurologically typical if he or she has the ability to do so. This option is, of course, not equally distributed across the population of individuals with neurological differences. To the extent that neurological privilege and disability-based discrimination continue to exist, the advantages to passing as neurologically typical exist as well. Moreover, an individual right to retain previous identity arguably deserves protection, especially in the case of acquired or degenerative neurological difference. Finally, particularly when it comes to children, it is hotly debated whether behavioral therapy designed to force development away from neurological difference should be pursued. In Canada, this question rose to the level of a Supreme Court case. In part, this controversy surrounds the interest that many parents express in teaching their children to pass as neurologically typical.

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Disinterest and Noninvolvement

Another identity-related source of discussion and controversy involves whether or not an individual has the right to remain disinterested or uninvolved in political and policy questions surrounding neurodiversity. One group to whom this question might be posed is individuals with neurological differences who enjoy relative success in society. This issue of the “tension of attention” (Baker 2011) remains similarly unresolved in politics surrounding other forms of diversity (e.g., that of if, and to what extent, it is acceptable for women to be unconcerned about women’s issues). An uneasy consensus appears to have formed around the notion that in a democracy, each individual retains a right to select which, if any, political issues he or she wishes to be involved in. That being said, however, utter indifference to discrimination-based suffering, particularly when experienced by another who shares one’s own personal characteristic, appears morally questionable. Along similar lines, professionals who work directly with individuals with neurological difference might have even less of a right to indifference given the power dynamic inherent in many such client-practitioner relationships.

Whether professionals working in fields related to neurological difference with indirect involvement with individuals with neurological differences enjoy a similar right to disinterest or indifference is also open to question. For example, the goal of eliminating autism through (purportedly) genetic testing, or Down syndrome through current technologies, involves issues such as net losses in human genetic diversity and, potentially, increased pressure to abort fetuses found to be neurologically atypical (Silverman 2008). Specification of genetic normalcy is both a scientific and political act (Bumiller 2009). At the most basic level, public involvement in scientific progress constitutes an undesirable threat to basic scientific research, one similar to introducing politics into science. At the same time, indifference among scientists to the political ramifications of science can be equally costly.

Accommodations, Services, and Infrastructures

Controversy also surrounds the question of services and accommodations in the context of neurodiversity and neurological difference. For many observers, the assertion of disability rights accompanied by a demand for disability services appears contradictory at first glance. Typically, such impressions fail to take into account the existence of exclusionary infrastructures (such as access points, functionality of utilities, etc.). In any case, the denial of some individuals’ needs above and beyond the making of infrastructure changes can be harmful to those incapable of self-care or in need of targeted services in order to participate in society even under conditions of full inclusion.

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Neurotypical privilege continues to be broadly accepted. If, for example, a noise commonly irritating to those considered neurologically typical is present in an enclosed space (such as the sound of fingernails run down a blackboard), then a level of urgency around removing the source of the noise almost always develops. Stopping a noise similarly irritating to an individual identified as having a neurological difference would often be considered a low-level priority, with greater attention commonly paid either to removal of the individual or toward encouraging him or her to develop greater tolerance of the sound. Social norms and standards are, of course, a necessary condition of society. In fact, as Ann Jurecic (2007) has noted, one disabling but presumably well-intentioned response to the awareness of neurodiversity would be to relieve those with neurological difference of the expectation of conformity to social norms or standards of achievement expected of those considered neurologically typical (Jurecic 2007). However, much in the area of neurological privilege remains unexamined. Considerable deliberation will be required to distinguish between such privilege and expectations surrounding social norms and standards necessary for the functioning of society.

Stakeholders

Since diversity implies a level of interdependence, the direct effects of neurological difference on family members and other intimates of individuals with neurological differences also present dilemmas. The negative effects often experienced by parents of children with autism, for example, include financial suffering, social stigma, disempowerment, unfounded suspicion of deviancy, and marital strain (Baker & Drapela 2010; Silverman 2008). Significant improvement in this area could reasonably be expected as a result of substantial changes to exclusionary infrastructures and discriminatory attitudes. Nevertheless, the desire for a normal life achieved through a separate peace with society appears to be a common one among families living with neurological differences. A related issue is that of decline or suffering experienced as a result of living with neurological differences—especially when associated with increased risk of suicide, violence, homelessness, or incarceration. Many observers argue for limits to the tolerance of expressions of neurodiversity. In other words, the question of at what point behavior becomes dangerous or risky is a difficult one but one that must be discussed all the same.

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There is also the issue of posttraumatic growth and increased sense of meaning that family members and intimates with neurological difference routinely experience (Grinkler 2008; Kras 2009). Part of this controversy surrounds the question of who gets to speak for people with neurological differences. This is a core identity-politics issue, common to all forms of diversity. On the one hand, there may be little reason to expect that an individual with a neurological difference is better equipped to speak for others, particularly those with different neurological conditions, simply by virtue of being considered neurologically atypical (Ortega 2009). On the other hand, any individual who has taken the time to learn about the implications of neurological difference has a level of expertise that is potentially relevant to political discourse surrounding neurodiversity, regardless of that individual’s own neurological status. Thus the matter of who can speak for whom remains a work in progress.

Conclusion

It now appears that if human neurology were somehow simple enough for human beings to understand it, we would, paradoxically, not be intelligent enough to understand it (Eagleman 2011). Full recognition of neurodiversity, in both senses of the word, originates in a more mature understanding of the human brain than now exists or has existed in the past. Substantial use of that very same human brain, however, will be necessary in order to manage the opportunities and challenges posed by neurodiversity in coming years.

Bibliography

Armstrong, Thomas. 2010. Neurodiversity: Discovering the Extraordinary Gifts of Autism, ADHD, Dyslexia and Other Brain Differences. New York: Da Capo Lifelong Books.

Autistic Self-Advocacy Network (ASAN). http://www.autisticadvocacy.org/ .

Baker, Dana Lee. 2006. “Neurodiversity, Neurological Disability and the Public Sector: Notes on the Autism Spectrum.” Disability & Society 21: 15–29.

Baker, Dana Lee. 2011. The Politics of Neurodiversity: Why Public Policy Matters. Boulder, CO: Lynne Rienner.

Baker, Dana Lee, and Laurie A. Drapela. 2010. “Mostly the Mother: Concentration of Adverse Employment Effects on Mothers of Children with Autism.” The Social Science Journal 47: 578–592.

Bumiller, Kristin. 2009. “The Geneticization of Autism: From New Reproductive Technologies to the Conception of Genetic Normalcy.” Signs 34: 875–899.

Eagleman, David. 2011. Incognito: The Secret Lives of the Brain. New York: Pantheon.

Griffin, Edward, and David Pollak. 2009. “Student Experiences of Neurodiversity in Higher Education: Insights from the BRAINHE Project.” Dyslexia 15: 23–41.

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Grinkler, Roy Richard. 2008. Unstrange Minds: Remapping the World of Autism. Philadelphia: Basic Books.

Jaarsma, Pier, and Stellan Welin. 2011. “Autism as a Natural Human Variation: Reflections on the Claims of the Neurodiversity Movement.” Health Care Analysis 20(1): 20–30.

Jurecic, Ann. 2007. “Neurodiversity.” College English 69: 421–442.

Kaufmann, Joanne. 2007. “Ransom-Notes Ads about Children’s Health Are Canceled.” New York Times, December 20.

Kras, Joseph F. 2009. “The ‘Ransom Notes’ Affair: When the Neurodiversity Movement Came of Age.” Disability Studies Quarterly 30(1). Retrieved from http://dsq-sds.org/article/view/1065/1254 .

Neurodiversity: A Symposium. Retrieved from http://neurodiversitysymposium.wordpress.com/ .

Ortega, Francisco. 2009. “The Cerebral Subject and the Challenge of Neurodiversity.” BioSociteties 4: 425–445.

Shift, Journal of Alternatives: Neurodiversity and Social Change. http://www.shiftjournal.com/ .

Silverman, Chloe. 2008. “Fieldwork on Another Planet: Social Science Perspectives on Autism.” BioSocieties 3: 325–341.

Source Citation

Source Citation   

Gale Document Number: GALE|CX2728300076