The Evolution of Neurodiversity: How Culture influences our values

(Another essay I had to write for a class)

Thomas Wolfe once said: “Culture is the arts elevated to a set of beliefs.” Our values are not only evident in our arts and culture, they can be influenced by them. Since 1998, when the term neurodiversity was first used by sociologist Judy Singer, autism has gone from being culturally portrayed as a disability in need of a cure to being viewed as a “different ability” in need of acceptance and accommodation. The emergence of the term neurodiversity into mainstream society is an example of a broader phenomenon which uses culture to change our values by changing the language we use to speak about them, using peer pressure to influence individuals and exploiting identity politics.

By changing the language we use to speak about different issues and values, the way society looks at them can be changed. In 1999, American philosopher and gender theorist Judith Butler noted that “Language plays an important role in shaping and altering our common or ‘natural’ understanding of social and political realities.”[1] In the same year, sociologist Judy Springer published the book Disability Discourse based on her sociology honours thesis in which she first coined the term neurodiversity. She was especially acclaimed for her chapter “Why Can’t You be Normal for Once in Your Life?” When she was growing up, she says, “we thought children were born blank slates that parents could write on. When my daughter was born, I had to revise my thinking.”[2] This re-thinking naturally led to a new language around autism which trickled down from academia into mainstream culture. Other themes, such as cultural, sexual and gender diversity exploit the same argument; that differences are natural, that humans are simply “wired” differently and that these variations should be celebrated, accepted and accommodated. It was no great leap then, to introduce the word neurodiversity, in order to suggest that autism is not a disorder in need of a cure, but rather a different variation in neurology that should be accepted, supported and celebrated.

Novelist Doris Lessing notes that humans are group animals; we often join groups to find like-minded people. However, groups eventually change the thinking of individuals who belong to them and it is easier to conform than to maintain an independent opinion.[3] Up until the late 1990s, our idea of an autistic person was someone who, like Raymond in the 1988 comedy-drama Rain Man might have one super-talent like solving complicated math problems in seconds, but who was otherwise mentally handicapped, could not be reasoned with, had extreme difficulty communicating with others and could not be let out alone in society. Enter stage left: the internet. In 1997 journalist Harvey Blume wrote in the New York Times: “In cyberspace, many of the nation's autistics are doing the very thing the syndrome supposedly deters them from doing -- communicating -- often in celebration of the medium that enables them to do so.”[4] Online forums such as Independent Living permitted autistics to share experiences, exchange information and swap ideas, without feeling mentally drained afterwards.[5] When autistic people first joined these online groups, it was often for mutual support in figuring out how to blend in with neurotypical people. Eventually, as the idea of neurodiversity gained popularity, the concept that autistic people did not need to be “fixed” but that instead, society needed to accept and accommodate them took hold. Group thinking influenced individuals, and we would be hard-pressed to find high-functioning autistic people today who think that they need a cure.

James Davison Hunter, the man who coined the term “culture wars,” mentions in an interview with Jason Willick[6] that identity politics exist because of our need to identify with a group, in both our affirmations and our negations. Even within the autism community, where the medical view focuses on the disability and is centred on finding a cure and the social view focuses on how society causes the disability through lack of services and is centred on finding acceptance and accommodation, there can be a sometimes-intransigent divide in viewpoints.  The word “cure” has become controversial, mostly with independently functioning people who do not think that they need “to be fixed.” They view the idea as offensive as if society were trying to eliminate them.[7] While it is true that people on the spectrum can and do live independently and contribute to society, for parents like Amy Lutz, mother of a low functioning autistic child, the idea that autism is a “strange gift,” as Steve Silberman calls it in his book NeuroTribes: The Legacy of Autism and the Future of Neurodiversity, is mind-boggling. For families of those with extreme neurological symptoms who require a lifetime of care, the issue of autism in its more adverse forms needs to be addressed before making the claim that lack of services causes more suffering than the disorder itself.[8] As Denis Dutton, editor of the scholarly journal Philosophy and Literature points out, ideas should be more than just vague theory or jargon,  they should be based on common sense.[9] It may be counter-cultural and politically incorrect to question neurodiversity, but to dismiss the problems of low functioning autistic people creates yet another divide in never-ending identity politics.

Changing the way we speak about issues such as autism can challenge the way we think about them in a positive way, pointing to a more socially just world, however, it is important to maintain a certain independence in our thoughts, keeping in mind the influence that groups can have on us. By avoiding identity politics and carefully considering nuances even if they do not fit a certain narrative, we can avoid errors like leaving people with severe forms of autism out of the discussion.

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[1] Judith Butler, “A ‘Bad Writer’ Bites Back,” New York Times, 1999

[2] Samantha Craft, “Meet Judy Singer Neurodiversity Pioneer,” http://www.myspectrumsuite.com/meet-judy-singer/

[3] (Lessing, Doris, “Group Minds,” in Prisons We Choose to Live Inside, (Harper Collins Publishers and House of Anansi Press, Inc, 1988), 594-597.

[4] Harvey Blume, “Autistics, freed from face-to-face encounters, are communicating in cyberspace,” The New York Times, 1997, https://www.nytimes.com/1997/06/30/business/autistics-freed-from-face-to-face-encounters-are-communicating-in-cyberspace.html

[5] Blume 1997

[6] Jason Willick, “The Man Who Discovered ‘Culture Wars,’” The Wall Street Journal, 2018

[7] Jacqueline Stenson, “Why the Focus of Autism Research Is Shifting Away from Searching for a ‘Cure,’” NBC News, 2019, https://www.nbcnews.com/health/kids-health/cure-autism-not-so-fast-n1055921

[8] Amy S.F. Lutz, “Please Stop Whitewashing Autism.” Psychology Today, 2015. https://www.psychologytoday.com/blog/inspectrum/201509/please-stop-whitewashing-autism

[9] Denis Dutton, “Language Crimes: A Lesson in How Not to Write, Courtesy of the Professoriate,” The Wall Street Journal, 1999