*Update: a much revised iteration of this paper has now been published.*
Final publication is available
from Mary Ann Liebert, Inc.:
https://doi.org/10.1089/aut.2021.0075
This paper was originally submitted for credit in the Winter term of 2020, For the course Anthropology 9230B – Disability and Health in Local and Global Worlds, taught by Dr.Pamela Block
As folk theories of genetics have been integrated into the popular culture in North America, they have had a significant impact on our understandings of identity. This has had particular implications for Disability Studies, as advocacy groups coalesce around new “biosocial” identities. Identities that are perceived to have a biological, and often genetic basis. (Hacking 2006, 82) This has invigorated a renegotiation of the divide between the essentialist, medical model of disability and the constructivist, social model (Baker 2011, 7-12; Hughes 2009, 678-679). The social model of disability emphasizes socially constructed barriers that prevent people with impairments from participating fully in society. While this model has been essential in shifting the onus from disabled people to adapt to an inaccessible and ableist society, to society at large to create spaces that are more universally accessible, it has also sometimes had the effect of downplaying impairment and difference (Baker 2011, 9-10; Hughes, 2009, 679). Biosocial identity models incorporate some medical understandings of impairment within a broader social context (Baker 2011, 17; Graby 2015, 234-236).
Activists within the Neurodiversity and Autistic Rights movements have appropriated genetic and neurological language in the construction of Autistic identities (Ortega, 2009; Runswick-Cole 2014, 1124). Some academics have criticized this move, on the grounds that the Neurodiversity paradigm “accepts uncritically the idea that there are essential and knowable biological differences that construct our social identities and behaviours”, and that “It cannot from such a starting point adopt a meta-perspective that is able to question why ‘autism’ emerged (as opposed to being discovered) as a phenomena and became so popularized in the last few decades and what this social and cultural phenomenon might tell us more broadly about political, economic and cultural developments” (Milton and Timimi, 2016). Others have criticized the movement as presenting an overly homogenized view of Autism, one which is representative of so called ‘high functioning’ Autistics, while leaving the needs of so called ‘low functioning’ Autistics behind (Ortega 2009, 426; Ortega & Choudhury 2011, 332; Jaarsma & Welin, 2012, 21). A third caution of the adoption of such biosocial identities stems from critiques of identity politics. The heart of this argument is the limitation of identity politics in their ability to challenge the neoliberal status quo, and to address the underpinnings of ableism in a capitalist society. A narrow focus on identity based rights also risks ignoring important intersections of ableism with other forms of oppression (Mollow, 2004; Runswick-Cole 2014, 1118; Voronka, 2016, 197).
I would argue that the biosocial identity adopted by many Autistic activists is not an uncritical reiteration of medical model essentialism, but rather a strategically adopted response to current realities. Moreover, this response contains the seeds of a critique of how the medical diagnosis of autism is constructed, including reductive divisions between perceived ‘high’ and ‘low functioning’ Autistic people (De Hooge, 2019). This adoption of strategic essentialism is not a new strategy for a movement of marginalized people attempting to secure recognition, resources, and justice in a neoliberal society (Allen and Jobson 2016; Field, 1999, 194-196; Lawrence 2003, 21-24; Leve, 2011, 525-526).
Understanding how other movements have engaged with discourses strategic essentialism may shed new light on both the usefulness of such strategies, and their potential pitfalls. In looking beyond our individual struggles as Neurodiversity activists, we can see the ways they are deeply intertwined with other structural forces. In excavating those connections we may begin to move beyond the narrow field, and short term gains, of identity politics, to challenge the underlying ideologies that perpetuate ableist discrimination in our society (Mollow, 2004).
As part of an emerging social movement, much of the theory developed by Neurodiversity activists is still in a process of development. There is no single, definitive, definition of neurodiversity which is accepted by all Neurodiversity and Autistic Rights activists, and the term has grown and generated much discussion since it was coined by Judy Singer in the 1990s (Singer 2017, 17-19)
For the puropose of this paper, when I discuss neurodiversity, I will be using the definition developed by London Autistics Standing Together (LAST), of which I am a member:
(Devlin et al. 2016)
This definition developed out of extensive conversations within the Autistic advocacy community in London Ontario, and represents a consensus of multiple perspectives. I consider it an adequate representation of views held by many Autistic people who are actively engaged in the social movements under discussion.
It is understandable that both disability activists, and academics would have concerns about the use of biological and genetic language as it has been adopted by some Autistic activists, particularly given the use of biological explanations by the eugenics movements of the 19th and 20th centuries (Hughes 2009, 684; Rose 2001, 2). As appealing as biosocial constructions of identity can be, for their power to transform discussions of disability from a narrative of individual tragedy to one of minority rights, it is vital to understand the potential for such tactics to be used in the service of dehumanization (Hughes 2009, 686; Milton and Timimi 2016; Rose 2001).
The uneven way in which theory generated within the Neurodiversity movement has made its way into the academic sphere (Goodly 2013, 976) has meant that scholars have not always engaged fully with some of the more nuanced arguments forwarded by Autistic activists. The first point of misunderstanding between Neurodiversity activists and Non-Autistic academics seems to be the perception that Neurodiversity activists, as a whole, do not view Autism as a disability (Jaarsma and Welin 2012, 23). It is my experience that the ways in which Autism is discussed among Autistic activists is more nuanced than this.
The consensus definition of neurodiversity reached by LAST, which I have quoted above, explicitly identifies Autism as a disability (Devlin et al. 2016). Other Neurodiversity activists have written on the social model of disability and the relationship of the Neurodiversity Movement to other Disability Rights Movements (Bailin 2019; Graby 2015). ASAN, one of the most well known Autistic advocacy groups in the United States, explicitly states that “Autism is a developmental disability. It affects many things about the way we learn, move, communicate, and experience the world” and that “Disability is a natural part of human diversity” (ASAN 2020). The idea that Autism should be accepted as part of human diversity and that focus should be on accommodation and quality of life is not a denial of Autism’s disability status, but rather an embrace of the social model of disability (Graby 2015, 235-236).
A second criticism of the adoption of Autism as an identity category stems from the perception that the Neurodiversity movement is “dominated by people diagnosed with Asperger Syndrome and other forms of high functioning autism” (Ortega 2009, 426). Jaarsma and Welin take this assertion further, arguing that “The broad version of the neurodiversity claim, covering low-functioning as well as high-functioning autism, is problematic. Only a narrow conception of neurodiversity, referring exclusively to high-functioning autists, is reasonable”(Jaarsma and Welin 2012, 20).
The argument goes that Neurodiversity activists cannot advocate effectively for the supports that “low functioning” Autistics need, because our perception of Autism is incompatible with an understanding of impairment, particularly when that impairment is severe. Ironically, in making this argument, scholars like Jaarsma and Welin rely on categorizations that have been rejected by Autistic activists as being too essentiallizing (Banerjee 2017, 5:48-6:42; Becker, 2011; De Hooge, 2019; Ellis, 2017; Schaber, 2014; Thomas and Boellstorff, 2017).
Functioning labels have been used to divide Autistic people into two discreet categories. “Low functioning” Autistic people are often stereotyped as having little to no spoken language, intellectual impairment and difficulties with self care. This is also often perceived to correlate with other highly stigmatized Autistic traits such as self injurious meltdowns. “High functioning” Autistic people on the other hand are often stereotyped as having average to above average IQ, no difficulty with spoken language, or at most having forms of expression that are merely “awkward”, and having most of their impairments in areas of social functioning while being able to live largely independently.
In reality these categories do little to represent the lived realities of Autistic people who may have traits from either category, or experience a fluctuation in their abilities and impairments over time and in relation to different contexts (Banerjee 2017, 5:48-6:42; Becker, 2011; De Hooge, 2019; Ellis, 2017; Schaber, 2014; Thomas and Boellstorff, 2017). ‘Spiky profiles’ and fluctuation in ability is common among Autistic people and this lived experience forms the basis of Autistic critiques of functioning labels and arguments about the highly contextual and socially constructed nature of disability. Several Autistic activists have used auto-ethnographic narratives of their own abilities and disabilities to illustrate this point (Brechin, 2018; Brown, 2012; Ellis, 2017; Fenn, 2018; Flynn, 2018; Robinson, 2014; Schaber, 2014; Volz, 2019; Williams, 2019).
Jaarsma and Welin, in an attempt to circumvent some of the inconsistency with which functioning labels are applied, “distinguish between ‘‘high-functioning autists’’ and ‘‘low-functioning autists” by asserting that there is “partial consensus on this distinction: if autists have an IQ in the normal range (or above), they usually are said to have high-functioning autism (HFA)” (Jaarsma and Welin 2012, 21). In my work as an Autistic activist I have not found this consensus to be the case. Instead I have observed the application of functioning labels to be inconsistent, sometimes being applied on the basis of perceived intelligence, sometimes on the basis of adaptive functioning, and sometimes purely on whether or not a person began speaking with their mouthparts within a ‘developmentally appropriate’ time frame (Becker, 2011, Thomas and Boellstorff, 2017).
If this were simply a matter of inconsistency in the application of functioning labels, the question might be how to improve the validity and consistency in their application. However, I argue that functioning labels are deeply flawed in their conception, and not just their application. When academics like Ortega and Choudhury, and Jaarsma and Welin use functioning labels in their critiques of the neurodiversity movement they not only ignore the ways in which functioning labels flatten the tendency for impairment to fluctuate, depending on time and circumstance, they also ignore the ways in which the very conception of functioning labels is deeply entwined with ableism, white supremacy, and misogyny (De Hooge, 2019; Jack 2011).
Jordynn Jack deconstructs Simon Baron-Cohen’s “Extreme Male Brain” theory noting the gender bias in Baron-Cohen’s tests which “naturalize historically and culturally specific definitions of technology itself, which tend to exclude technologies associated with women, non-whites, and non-Europeans”(Jack 2011). Anna N. de Hooge makes similar observations in Binary Boys: Autism, Aspie Supremacy and Post/Humanist Normativity, linking biases inherent in the normalization of white masculinity to diagnostic disparities between white male Autistics who are more likely to be perceived as high functioning, and BIPOC, female and non-binary autistics who are more likely to be diagnosed with cooccurring intellectual disabilities and language delays (De Hooge, 2019).
These arguments build on the work of scholars aligned with Disability Rights Movements, Anti-Racism Movements, and the Mad Pride Movement, about the socially constructed nature of intelligence, and the role of race, white supremacy in the diagnostic process (Biklen and Duchan 1994 173-174; Brownlow 2007, 80-82; Chrisjohn et al. 1997; Heilker 2012; Inman 2019; Metzl 2010, 199-212; Mirza 1998, 114-116). In light of these discussions it becomes clear that ‘high-functioning’ and ‘low-functioning’, even when defined narrowly as a distinction between ‘high’ and ‘low’ IQ, are slippery categories. To ignore the constructed nature of these categories is to ignore the ways in which they are raced and gendered, and to ignore their historical roots in eugenic thought (Block, Balcazar, and Keys 2001, 18-20; Chrisjohn et al. 1997).
To support the assumption that the Neurodiversity movement represents only ‘high functioning’ Autistic people who view themselves as a biologically separate minority rather than as Disabled, Ortega and Choudhury quote the creator of the satirical website for the Institute for the Study of the Neurologically Typical, Muskie: “I and my experience of life is not inferior, and may be superior, to the NT experience of life” (Ortega & Choudhury 2011, 331). Leaving aside the blatant sarcasm of the original context, what is being missed here is that such views of (‘high functioning’) Autistic superiority are not representative of all, or even most, activists engaged with the Neurodiversity and Autistic Rights movements. Rather, they represent a particular philosophical perspective advanced by some Autistic people both within the Neurodiversity movement, and sometimes opposed to it, as in the case of the “Autistic Dark Web” 1. This standpoint has come to be known in Autistic circles as Aspie Supremacy.
The ADW’s reputation for misogyny, transphobia, and rumours of links to white supremacy is not accidental (The Aspergian 2019). Instead, as argued by de Hooge, “The notion of Aspie whiteness, along with the history of utilitarian arguments for Aspie survival, indicate a kinship between Aspie supremacy and Social Darwinism” (De Hooge, 2019). The choice by activists to embrace the label of Autistic as a politicized identity is not an attempt to erase the differences between Autistic people, rather it is a strategic choice to claim solidarity with those most impacted by the reductionist narrative of the medical model (De Hooge, 2019; ). In this way it draws directly on the social model in the work of earlier Disability scholars. (Hart 2019, 18-19)
While the potential for more nuanced views of Autistic identity exist within the Neurodiversity movement, it is not a given that the rejection of functioning labels alone will automatically result in the undermining of the excesses of medical model essentialism. Some authors have been critical of the Neurodiversity movement’s adoption of identity politics precisely because of identity politics dependence on a neoliberal construction of identity, and the tendency for identity politics based arguments for human rights to depoliticize discourse and fragment alliances between movements (Mollow, 2004; Runswick-Cole 2014, 1118; Voronka, 2016, 197).
In her discussion of what she terms the global ‘identity machine’, which she argues produces not only identities “but also the very ontology of identity that underlies liberal and neoliberal democracy”, Lauren Leve points to the effectiveness of neoliberal discourses in co-opting resistance (Leve 2011, 522-523). She calls on anthropologists, not to reject identity claims, but instead to “examine where that ontology is being appealed to and where it is not and, most of all, to look for emergent types of creativity”(Leve 2011, 525). Mollow and Runswick-Cole, also examine the stifling impact of neoliberal governmentally on the imaginative space that is needed for resistance. In their view identity politics has allowed activists to secure much needed resources, but will ultimately not be enough to challenge the underlying structures which create inequalities (Mollow, 2004; Runswick-Cole 2014, 1125-1128)
Autistic BIPOC people, Autistic LGBTQ+ people and others within the Neurodiversity movement have been calling for inter-movement solidarity, and a broadening of the Neurodiversity movement to include a more interdependent and relational view of identity. In We Autistics, We Villages, We Humanoids, Gzhibaeassigaekwe writes:
Much more is revealed in the narrative of resistance by autistic people than can be contained by any one movement. In the disability rights movement, we talk about disability as constructed: that we are disabled by a world that was not built for us. But the reality is that the industrialized world we have come to accept as ‘normal’ was not built to sustain life at all, only to consume it. Neurodiversity is part of a new scope of sight that needs to reach even deeper than social models of disability which retain the white colonial privilege of that delusion. Autistics of colour are among those who fall first and hardest to the violence against us that punctuates that delusion, and so our voices need to be heard across the movements that are rising today as we resist the final solution of ‘curing’ biodiversity. There is one common human disability that we all share and is not socially constructed: without air, without water, without land and without each other, our bodies, without exception, will die.
(Meunier 2017, 433)
These voices exist within the Neurodiversity movement, and they are laying the groundwork for the movement to transcend its current entanglement with the “identity machine”. This diversity in perspectives in Neurodiversity activism is why authors such as Damien Milton have been critical of non-Autistic activists who make claims about the Neurodiversity movement without sufficient “interactional expertise” (Milton and Timimi 2016). I would extend Milton’s argument further, by pointing out that the voices of Autistic people who experience multiple intersections of marginalization may not be easy to find by those outside our communities who wish to study Autistic activism. Understanding the complexity of the Neurodiversity movement takes an investment of time, and the humility to build respectful relationships with activists from diverse backgrounds.
The strategies of strategic essentialism employed by the ‘biological citizens’ of the Neurodiversity and Autistic Rights movements are not new. They find precedents in anti-colonial and indigenous rights discourses (Allen and Jobson 2016; Field, 1999, 194-196; Lawrence 2003, 21-24; Leve, 2011, 525-526). There is much to be gained by paying attention to how these strategies have played out in more established movements, the social contexts that produced them, and the points of intersection between the power structures of ableism, and colonialism. This is not just because the emerging Neurodiversity and Autistic Rights movements stand to benefit from the hard won wisdom gleaned by these movements; why after all reinvent the proverbial wheel; but also because racism, eugenics and ableism have a long and sordid history of entanglement (Block, Balcazar, and Keys 2001, 18-20; De Hooge, 2019; Mills and Lefrançois 2018). This history continues to resonate in the lives of all Autistic people, but it is felt most strongly by those who experience multiple intersections of marginalization (Ashkenazy 2017; Onaiwu 2017; Brown 2017).
In their consideration as to whether or not Autistic people can be seen as having a “culture”, Jarsma and Welin state that;
The Inuit in Canada, Native Americans in the USA, and Sami population in the Scandinavia are examples of groups that claim special rights. In their case this is based on a common origin and a shared history. This is not the case for autistic people, nor do they have a homeland of their own. The claims from the autistic culture are similar to the Deaf culture, which also live dispersed among the majority. But how to determine whether somebody is a member of the autistic culture? Is it enough with self identification as autistic or do we need some ‘‘objective’’ way to characterize them? In the case of Sami people or Inuit there are ‘‘objective’’ ways; each member shares a common history and background. Although neither autistic people nor Deaf people have a common origin it seems that there are rather simple behavioral traits that together with self-identification will single out members of such a culture”.
(Jaarsma and Welin 2012, 26)
This framing plays to the “identity machine” described by Leve in assuming that identity categories need some “objective” basis in order to be “authentic” (Leve 2011, 525). I would argue that identity categories, even those as taken for granted as ‘ethnicity’, and ‘culture’ are always constructed and contain a degree of fluidity.
Indigenous identities in North America have never been reducible to “objective” measures, and have never been a simple matter of shared history. Instead the racialization of Indigenous people has been a direct result of policies of assimilation and more saliently, an attempt to convert indigenous people to European styles of land ownership, opening their lands to colonization. In Canada this regulation of indigenous identity was first codified in the Gradual Civilization Act of 1857, The Gradual Enfranchisement Act of 1869, and The Indian Act. It continued in the genocidal confinement of children in residential schools, and it lives on in forced sterilizations, ongoing over-representation in the foster care and prison systems, and continued gender discrimination in ‘Indian’ status, which has not been fully rectified, despite revisions to the Indian Act. These policies find their justification in ideas about the superiority of European, and explicitly Christian, ‘civilization’ and the perceived cultural, and mental inferiority of indigenous people (Hall 2018, 75-84; Lawrence 2003, 6-11; Palmater 2011, 29-54; Rasmussen 2019, 18-19). As such they are historically linked not only to the construction of racial identities in Canada, but to the construction of notions of intelligence and disability as well (Hall 2018, 79; Mills and Lefrançois 2018).
Indigenous academics and activists have pushed back against colonial narratives. In doing so, many find themselves in a double bind (Lawrence 2003, 13-15; Palmater 2011, 175-210). The legal framework for indigenous rights in Canada is based on a construction of Indigeneity that is based in a myth of pre-contact “authenticity” (Lawrence 2003, 23-24; Palmater 2011, 176). Activists and academics who wish to further more relational and fluid concepts of identity must walk a tight rope between reinscribing essentialist colonial narratives and undermining struggles for self-determination and the acknowledgement of their communities’ legal rights (Lawrence 2003, 13-15).
In her discussion of Indigenous identities, and surrounding narratives of authenticity, Lawrence cautions that: “it is important to emphasize that status Indians are not being simply “brainwashed” by the logic of the Indian Act into accepting these colonial categories as natural” (Lawrence 2003, 12) but rather that “no risk-free space exists in which to explore Native identity”. Instead “the blurring and shifting of cultural boundaries that can occur in white-dominated contexts when Nativeness is theorized not as an authentic essence but as something negotiated and continuously evolving can have dangerous repercussions for Native people in terms of asserting Aboriginal rights” (Lawrence 2003, 22).
A similar caution is warranted when discussing whether it is time to move beyond the strategies of strategic essentialism adopted by Neurodiversity activists. Academics such as Damien Milton have rightly pointed out that there are potential consequences to disbanding autism as an identity category, both in terms of accessing services and supports, and in making differences in experience and behaviour understandable to non-Autistics (Milton and Timimi, 2016). These practical considerations illustrate the importance of understanding the power structures that Autistic activists are responding to when they employ strategies of strategic essentialism. What is more, if we were to repudiate these strategies without fully understanding the power dynamics behind them, we would miss an opportunity to find the places where the struggle of neurodiversity activists is “bound up” with other liberatory struggles (Coughlin 2014, 137-138). It is in those connections that we may find the seeds for transcending the “solipsistically narrow”( Ortega & Choudhury 2011, 337) field of biosocial identity politics.
Baker highlights the need for complexity in our approach to disability. This first and foremost requires a consciousness of the “distinction between beliefs, justification and policy goals” (Baker 2011, 219). It is undeniable that Autism is a construct. For all the discussion of genetic mutation, and differently “wired” brains, the underlying causes of autism have not been identified, and it is looking increasingly like there is no single underlying biological basis of the behaviours and traits we characterize as autism (Runswick-Cole 2014, 1119). This does not mean that Autistic identity should be abandoned outright. As with other marginalized groups Autistic people experience differential treatment based on our perceived differences, creating a degree of common experience of discrimination, and a sense of ‘otherness’ (Milton and Timimi 2016).
Identity politics can be a useful tool for appealing to neoliberal sensibilities through the frameworks of human rights. Sometimes it is necessary to employ essentialist constructions of identity strategically in order to secure needed resources and protections (Leve 2011, 520; Milton and Timimi 2016; Runswick-Cole 2014,125-127). To do otherwise would be to loose our ability to remain “dans le vrai” or “within the true”(Foucault 1972, 224) of much of the current biologically focused discourses around autism, where the medical model adopted by autism professionals still holds sway. However, it is important that, when making claims about Autistic identity, we do not lose sight of the history of how Autism came to be constructed as a diagnostic category (De Hooge, 2019; Jack 2011; Milton and Timimi 2016; Mollow, 2004). To do so would be to loose site of the myriad ways in which the intersecting, structural forces of ableism, racism, and class continue to operate in our daily lives.
Footnotes:
1- The ADW is a loose alliance of Autistic people opposed to neurodiversity. While they do not state unified reasons for opposing the movement, many of those involved condemn the Neurodiversity movement as representative of “moral relativism” and “identity politics”, and have become known for trolling LGBTQ+ and BIPOC Autistic activists on social media (The Aspergian 2019).
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This Is Not An Image Of Loss 
Thank you for sharing your wonderful essay. I completely agree with your views regarding the nature of autistic identity! Sorry I don’t have more to say at this moment,
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