Communicating Culture: What Neuroscientists Need to Know about the Neurodiversity Movement

 

 

 

 

 

 

“Although biomedical platforms are efficient at driving translational research forward, they are not passive and transparent, but actively entrench assumptions that may be deeply contested.”

            ~ Gills-Buck and Richardson 2014

INTRODUCTION

            The biomedical sciences have become deeply embedded in everyday life.  Discussions about genetics, the brain, the gut, and many different diseases/ disorders have become commonplace, thus highlighting the need for high-level communication of scientific research by journalists, reporters, and scientists.  While this need for scientific communication is commonly discussed in academic environments, rarely do scientists and researchers discuss culture and what they can learn from the non-science oriented world about their research topic. 

            This disconnect between scientists and laypeople can be seen very clearly in the neurodiversity movement.  For the purposes of this paper, I will focus specifically on neurodiversity in regards to autism, though the neurodiversity paradigm and movement include a host of neurological and psychological conditions.  Neurodiversity is a fact of biology; everyone slight variations in their genes that lead to different structural and functional arrangements of the brain (Walker 2014).  Activists use this biological fact to explain the neurodiversity paradigm, or the idea that society has determined which brains are “normal” and which brains are “disordered”, when in fact all neurodiversity is natural and valuable (Walker 2014). The neurodiversity movement has embraced the biological knowledge regarding diversity of brains and cognitive function, and used those ideas to spearhead a campaign for equality, civil rights, respect, and social inclusion for neurodivergent people, or people whose brains fall outside of societal norms (Walker 2014). 

            Despite the presence of biological research (currently being used by the neurodiversity movement) regarding the innate diversity in human brains and cognition, scientists and researchers continue to reinforce the cure-focused medical model of disability that describe autism spectrum disorder as a debilitating condition that must be treated.  The purpose of this paper is to compare quotations from disability scholars, activists, and neurodiversity bloggers with quotations from scientists and researchers in an attempt to better understand how cultural views of autism inform scientific research, and the importance of scientific research recognizing the influence of culture on research techniques, data analysis, and conclusions.  Furthermore, I will begin to explore the potential for change in how the neuroscience community frames autism, and how changing the perception of autism in scientific research will help the neurodiversity movement. 

 

NEURODIVERSITY IS A BIOLOGICAL FACT (OR IS IT?)

“As psychological scientists, we are experts at empirically identifying a vast array of distinctions among humans. But as psychological scientists, we can also fall prey to drawing invidious comparisons—contrasts and conclusions between groups of people that are made with either the explicit or unconscious goal of showing one group in a negative light (Cole & Stewart, 2001). Differences get framed as deficits, and such negativity enables stigma (Amundson, 2000).”

            ~Gernsbacher 2010 

            The goal of this section is to compare the language utilized to describe autism (and other forms of neurodivergence) in neurodiversity blogs, like “Neurocosmopolitan”, and the language used in scientific articles.  The same scientific evidence used as the backbone of the neurodiversity movement is presented as “deficits” of autistic brains in academic articles and journals.  Researchers are accepting of the knowledge that human brains are diverse, however, through their language and presentation of evidence they discredit the notion that neurodivergent and neurotypical brains and cognitive styles both yield substantial, yet different, strengths and weaknesses. 

 

“Neurodiversity is a biological fact.  It’s not a perspective, an approach, a belief, a political position, or a paradigm.”

            ~ Walker 2014

“There’s an awful lot of scientific evidence that shows quite plainly that there’s considerable variation among human brains.”

            ~ Walker 2014

“Sociological writings suggest that the assimilation of biological information into conceptions of self and identity is already in motion…”

            ~ O’Connor and Joffe 2013

            In his blog “Neurocosmopolitan”, Nick Walker describes neurodiversity, the neurodiversity paradigm, and the neurodiversity movement.  He defines neurodivergent and neurotypical and emphasizes the importance of correct use of language in dispelling stigma associated with neurodivergence in our society.  Furthermore, he uses science as a justification for the neurodiversity movement.  By describing the innate variation between human brains and cognition, he focuses on “facts” proven by scientific evidence rather than providing theories or opinions as justification.  The O’Connor and Jaffe quote speaks to the incorporation of biological discoveries into identities, which is perfectly exemplified by the neurodiversity paradigm.  This speaks to how prevalent perceptions of neuroscience have become within our society, perhaps because of the power and importance attributed to scientific research.  Scientific evidence and facts are taken as truth, as objective rather than subjective. 

 

“In no other human condition is this initial problem more pressing than in the case of autism. A highly prevalent neurodevelopmental condition of genetic origins, autism is characterized primarily by early-onset, lifelong, and potentially devastating disabilities in social and communicative function (Volkmar et al., 2004).”

            ~ Klin et al 2015

“Autism spectrum disorder (ASD) is a lifelong neurodevelopmental disorder characterized by restricted, repetitive behaviors and impaired communication and social interactions (American Psychaitric Association, 2013). ASD can have a considerable impact on quality of life as many people with ASD experience difficulties communicating, developing relationships, and managing restrictive behaviors (American Psychaitric Association, 2013).”

            ~ Barnard et al 2015 

            Scientific articles studying mechanisms or genetics related to autism often begin by giving a brief description of the symptomology and epidemiology of autism.  These statements are added to give the reader a little bit of background knowledge about the disorder prior to zooming in on a particular characteristic of autism, as well as to inform the reader why they should care about the research being presented.  These descriptions are often deficit-based, and describe the negative aspects of autistic cognition and behavior rather than giving an objective view.  In a scientific review article about visual engagements in infants, Klin begins by describing autism as a “pressing case”, language that suggests that a cure or at least treatment of autism is necessary.  Another review by Banard et al utilized the current medical description of autism- repetitive behaviors, impaired social interactions, and impaired communication- still emphasizing deficits in people with autism rather than differences.

 

“Quite compellingly, each of these statistically significant demonstrations of autistic superiority is labeled by its authors as a harmful dysfunction.”

            ~ Gernsbacher Dawson and Mottron 2006

“Even researchers who study autism can display a negative bias against people with the condition. For instance, researchers performing functional magnetic resonance imaging (fMRI) scans systematically report changes in the activation of some brain regions as deficits in the autistic group — rather than evidence simply of their alternative, yet sometimes successful, brain organization.”

            ~ Mottron 2011

            These quotes illustrate the disconnect between researchers who study autism and autistic people themselves.  The neurodiversity movement has utilized biological research that shows the different cognitive styles, brain structure, and brain circuitry seen in autistic people, but the language used by scientists to discuss these differences focuses on “deficits”, “dysfunctions”, and things that need to be fixed rather than differences.  This suggests that perhaps scientific research is not as objective as it is commonly perceived to be- otherwise, how could two groups of people gain two entirely different perspectives about what scientific results mean?  Mottron and Gernsbacher also speak to the importance of scientists recognizing the inherent bias in their research, particularly as the language that they utilize represents the negative stigma and associations that autism holds within our society.  Changing the language as well as the framing of differences in the autistic brain may allow for a better understanding of autism as a different cognitive style, rather than deficient and debilitating lacks in cognition. 

 

“To be put into the same category together with low-functioning autists may be regarded by some of the persons with Asperger’s as an even worse stigmatization.”

            ~ Jaarsma and Welin 2012

“… our own failure to imagine how another person lives or our reluctance to live as another person lives determines the actions we take in relation to what we imagine as the suffering of others.”

            ~ Garland-Thompson 2012

            These final two quotes for this section speak both to the importance of thinking about language and subjectivity in science.  The scientific Jaarsma and Welin paper presents a highly problematic argument regarding the DSM classifications of autism, and the above quote is taken from a portion of that article.  Rosemarie Garland-Thompson, in her article “The Case for Conserving Disability”, argues the dangers of imaging how other people live.  Jaarsma and Welin provide no material evidence that people with Asperger’s or other high functioning autistics find it stigmatizing to be classified as having the same condition as low functioning autistics.  Thus, I believe that this statement stems from their own bias against low functioning autistics due to their “lack of intelligence” (as described throughout their paper).  In a scientific paper published by an academic journal and read by many people, this is highly problematic and could be taken as objective truth, when it is in fact a subjective projection and opinion about based on assumptions about how another group of people feel.  This speaks to the importance of recognizing the subjectivity of science, and specifically how subjective medical diagnoses, symptoms, and experimental results are despite the common assumption that these are scientifically based facts.  In fact, it allows us to question the impact of societal views on scientific experimentation, result analysis, and presentation of conclusions. Perhaps these things are not as objective as we think they are and/or would like them to be.   

 

            In conclusion, this section compared and contrasted language and perceptions utilized to frame autism.  The neurodiversity movement utilizes more objective conclusions to power their discussion of autism, focused in findings of “difference” rather of “deficiency”.  This is in sharp contrast to many scientific researchers who study autism, and often describe autism in a negative light highlighting “deficiencies” and “debilitating” symptoms.  The goal was to show how the same scientific information could be used to make very different conclusions, often based on social views.  This inherent subjectivity in science is under-reported and under-discussed, and it is important for both scientists and the general public to consider when thinking about scientific results.

 

WHAT KINDS OF NEURODIVERGENCE ARE ACCEPTABLE?

“… we should acknowledge that we already tolerate, if not accept a variety of cognitive differences- again, attendant differences in the underlying neural structures.”

            ~ Fenton and Krahn 2007

            As discussed in the previous section, neurodiversity is a biological fact, however, scientists and psychologists often use deficit-based language to describe the autistic cognitive style and often frame their research based on negative societal perceptions of autism.  This leads me to my next question, how do we (both scientists and the general public) decide what kinds of neurodivergence are acceptable and provide an asset to society versus the kinds of neurodivergence that are pathological and must be cured?  The purpose of this section is to begin to understand the measures that scientists utilize to determine the types of neurodivergence “worthy” of acceptance and the types of neurodivergence that need to be cured.  The inspiration for this concept comes from a paper entitled “Autism as a Natural Human Variation: Reflections on the Claims of the Neurodiversity Movement” written by Pier Jaarsma and Stellan Welin and published in the scientific journal Health Care Analysis.  In this paper, Jaarsma and Welin argue that the neurodiversity movement makes sense in the context of high functioning autism, and that high functioning autistics may in fact be limited by their diagnosis.  I’d like to work to critique the idea that society should only accept some forms of neurodivergence, as well as the general distinction between “high functioning” and “low functioning” autism.  Finally, I would like to start addressing the idea that scientific results may not be as objective as expected, and the importance of considering this when analyzing data and presenting conclusions.   

 

“… what qualifies as maladaptive, or adaptive, is context sensitive.  What is fitness conferring in one environment may not be in another.”

            ~ Fenton and Krahn 2007

“We are not suggesting that those with LFA have an easy life nor are we denying that their carers sometimes shoulder a heavy burden of care.  What is being problematized is a panglosian view of the ‘ordinary’ and an overly narrow perspective on expected neurological variation within the human species.”

            ~ Fenton and Krahn 2007

“All that IQ differences between autistics can tell us is that they have varying levels of capabilities in terms of some aspects of intelligence, not that some are just more intelligent, simpliciter, than others.  The categories of high and low functioning then have to be narrowed to refer only to these aspects of intelligence.”

            ~ Lim 2015

            These quotes speak to the ambiguity of distinctions between high functioning autism and low functioning autism, as well as to the importance of accepting all forms of human neurodivergence as valuable.  Our society values intelligence that leads to production of some good or contribution.  This is reflected in the psychological and scientific testing utilized to measure intelligence- the tests measure only some forms of intelligence, the types of intelligence valued by society.  A very simple, and yet shockingly common, example is using a verbal IQ test to measure intelligence in a nonverbal person.  It seems obvious that if a person is nonverbal, a verbal IQ test probably is not a good measure of intelligence, and another test should be used.  However, it is incredibly common for verbal IQ tests to be utilized and interpreted as testing “intelligence” as a whole, rather than as testing verbal intelligence and capabilities.  This speaks to Fenton and Krahn’s points regarding the importance of context when assessing abilities or “fitness”, to use biological terms.  Lim articulates a similar point regarding intelligence and testing in her quote, highlighting the importance of adjusting descriptions of high functioning and low functioning to make them context-specific.  These quotes highlight the importance of including all neurodivergent people in the neurodiversity movement, as many of the seemingly scientific distinctions between high and low functioning are in fact quite subjective and context-dependent.

 

“Neuroimaging data have been particularly effective at constructing this ‘otherness’.”

            ~O’Connor and Joffe 2013

“It seems unlikely that neuroscientific explanations will eradicate stigmatizing or prejudicial understandings of social groups.  In some cases, neuroscientific explanations of human difference may reinforce, rather than dismantle, the social and symbolic boundaries that separate categories of people.”

            ~ O’Connor and Joffe 2013

            In the Jaarsma and Welin paper, the authors use a misguided understanding of the neurodiversity paradigm to explain the need for acceptance of high functioning autistics, but a cure for low functioning autistics.  This is a perfect example of what O’Connor and Joffee describe in the two quotes- they constructed an “otherness” (with intelligence testing, not neuroimaging) between neurodivergent low functioning autistic brains and neurotypical/ neurodivergent high functioning autistic brains.  This otherness is akin to dehumanization in many respects, it allows Jaarsma and Welin to state that the brains of the “other” (LFA) are neurodivergent in a manner that is actually pathological and must be cured, whereas the brains of neurotypical and high functioning autistics should be embraced.  Rather than critically analyzing scientific evidence for a distinction between HFA and LFA or thinking about the implications of their statements on “low functioning” autistics, the authors reinforce societal conceptions of intelligence and acceptable forms of divergence. 

            Much like the importance of language in scientific papers, it is important to think critically about results of experimentations in the context of social constructions like intelligence and disability.  Neuroimaging data is often presented as a two panel figure- one panel is a neurotypical brain and the other is a neurodivergent brain.  Perhaps instead of only displaying two brains, and thus constructing a very concrete comparison between the typical and divergent brain, scientists should show a variety of brains, thus also showing the diversity both between groups and within groups of neurodivergent and neurotypical brains.

 

            In conclusion, this section discussed how we decide what sorts of neurodivergent brains we accept and what sorts of neurodivergent brains are labeled as deficient or pathological.  It appears that this distinction boils down to the degree of “otherness”, or how well neurodivergent people do on neurological tests, tasks, and imaging designed (mostly) by neurotypical people for other neurotypical people.  When neuroscientists study neurodivergent brains, it is important to think critically about the sorts of testing that are being utilized for the studies to determine if the test is really “fair” for all cognitive styles and brain structures, or if it is inherently biased towards neurotypicals.  Furthermore, it is important to thinking about how research results are framed- are differences in brain structure and cognition really deficiencies or, more simply, just differences? 

 

WHAT HAPPENS WITHOUT NEURODIVERSITY?

“I ask what we lose besides the individuals themselves if we eliminate disability and disabled people from the world.”

~ Garland-Thompson 2012

            This section stems off previous discussions of language and subjectivity in science and acceptable types of neurodiversity.  Based off of Rosemarie Garland-Thompson’s article “The Case for Conserving Disability”, discussions regarding the importance of conserving neurodiversity will allow us to explore the value of neurodiverse brains and cognitive styles within our society.  Garland-Thompson describes the importance of conserving disability, I would like to specifically emphasize that neurodiversity (though neurodivergence is likely included in Garland-Thompson’s definition of disability) should also be conserved. 

 

“I intend the term conserve to suggest the prevalence, persistence, and enduring sturdiness of disability rather than its fragility or vulnerability.”

~ Garland-Thompson 2012

“… our bodily form, function, comportment, perceptual apprehension and way of mind shape how we understand our world.”

            ~ Garland-Thompson 2012

“…although most parents struggling with children with autism would jump at the chance to mitigate or cure the symptoms, it is not appropriate to think of autism solely as a disorder needing treatment.”

            ~ Nature 2011

            These quotes discuss the importance of conserving disability, to use the words of Rosemarie Garland-Thompson.  Garland-Thompson describes how she specifically chose the word “conserve” as an ode to biodiversity conservation efforts as well as to indicate the persistence and prevalence of disability.  Similarly, we can think about what it means to conserve neurodiversity.  To conserve neurodiversity, there needs to be a societal acceptance of the both neurodivergent and neurotypical minds, and neurodivergent people must have equal rights, respect, and social inclusion as neurotypical people.  This acceptance must also be translated into the scientific fields and scientific research- instead of looking for the genetic basis of a neurological disorder like autism, researchers could look for the genetic basis of various traits to better understand brain development and function.  Thus, scientific research would not be looking for a cure, but an understanding of how the brain worked in a variety of different cognitive systems.  The actual research protocols would be similar in many respects, but the framing of experiments and thus results would be analyzed and described differently.  Surprisingly, as part of the autism special issue published by Nature, on of the most prestigious scientific journals, there were a variety of articles written by scientists and researchers that described the importance of conserving neurodiversity and promoted re-thinking classical testing and data analysis due to the implicit biases towards neurotypical brains and cognitive styles.  All of the strictly scientific papers in this also described autism in a less deficit-model based manner, although many cited the official DSM definition of autism that is intrinsically negative and focused on weaknesses of autistics, a sharp contrast to some of the other scientific papers described throughout this essay.  It is my hope that the issues raised in the 2011 Nature Autism publication will continue to be addressed and discussed within the autism research community, and that more labs adopt a new approach to studying autism.   

 

 “… characterized by the originality of interpretation arising from the distinctive embodied cognition associated with autism.”

            ~ Garland-Thompson 2012

 “I believe that autism can be a beautiful way of seeing the world.  I believe that within autism there is not only the group- the label- but the individual as well: there is strength in it, and there is terror in its power.  When I speak of emerging from the darkness of autism, I do not mean that I offer a success story nearly wrapped and finished with a ‘cure’.  I and the others who are autistic do not want to be cured.  What I mean when I say ‘emergence’ is that my soul was lifted from the context of my earlier autism and became autistic in another context, one filled with wonder and discovery and full of the feelings that so poetically inform each human life.”

            ~ Prince-Hughes 2004 (quoted in Straus)

“Autism is generally described in a negative way by listing its core attributes as impairments in social communication, narrow but deep interests and stereotyped behaviour, but emphasis could also be placed on the more positive aspects of the condition, such as ‘strong persistent interests, attention to detail, unusual memory, fascination with systems and patterns, and ability to concentrate for long periods that may be conducive to creativity and originality'.”

            ~ Walsh 2011

            Autistic cognition has long been thought of as disordered, and there are a variety of different theories that attempt to explain the “deficits” of this cognitive style.  Garland-Thompson changes the language by focusing on the originality and distinctiveness of autism cognition.   As I’ve described earlier, this distinct autistic cognitive style has only been studied in terms of deficits and it would be incredibly enlightening to study a more holistic view of autistic cognition, as well as other neurodivergent cognitive styles, to better understand the depth and breadth of cognitive styles and processes in humans.  When I first read the quote by Dawn Prince-Hughes, I immediately thought of a socially constructed dark cloud surrounding an autistic person that, once lifted, allowed the autistic person to emerge. A relatively simple but perhaps powerful way to start removing this socially constructed cloud would be to change the dialogue surrounding autism within the scientific community so that the neurodiversity movement could use even more scientific evidence to educate the public about the importance of neurodiversity.   

 

            In conclusion, this section was created to highlight the importance of neurodiversity, and inclusion of neurodivergent cognitive styles in our society.  This inclusion could also either be translated to, or aided by, more research about the differences (not deficiencies) in autism cognition to help us better understand brain biology, structure, and function as a whole. 

 

WILL NEUROSCIENCE HELP OR HURT THE NEURODIVERSITY MOVEMENT?

“New scientific information can indeed challenge and modulate existing understandings; however, it can also assimilate into and reinforce established ideas.  It is therefore not self-evident that neuroscience will substantively alter understandings of personhood in predictable directions.”

            ~ O’Connor and Joffe 2013

            In this final section, I hope to use quotes and reflections to explain why neuroscience may be a powerful tool for the neurodiversity movement.  I will draw from articles discussing the important role that science has taken within our society, as well as circle back to scientific papers, specifically those critiquing autism and autism research.  As described by O’Connor and Jaffe, neuroscience research can be utilized to challenge and change existing understandings, but it can also be used to reinforce established ideas.  My hope is that through education of researchers and a few vocal proponents of neurodiversity and changing the dialogue of autism within the scientific field, neuroscience can be utilize to challenge societal conceptions and understandings of autism as a disorder that is in need of curing and treatment.

 

“The expansion of the neuroscientific research programme to topics of acute social concern has raised neuroscience’s profile in society, propelling it into the public sphere.”

~O’Connor and Joffe 2013

“The social significance of neuroscience’s expanding media presence is intensified by experimental evidence suggesting that neuroscientific information may wield particular rhetorical force.”

            ~ O’Connor and Joffe 2013

            While this essay has, hopefully, undermined the idea that scientific information is objective and based solely on facts from research, it is important to recognize that this perception of science as being fact-driven and free of bias exists broadly in the public.  This gives neuroscience, as well as other forms of science, significant rhetorical force that would be beneficial for use to further justify the neurodiversity movement.  Activists have already been using the biological fact that there is intrinsic diversity in human brains as the backdrop for the movement, and having more evidence regarding these structural and functional brain differences (framed in a non-deficit, cure-based manner) would definitely help, not hurt!  O’Connor and Joffe also discuss the public interest in neuroscience, a new and rising phenomenon, and perhaps this peaked curiosity and interest could be beneficial when discussing a new science-based social movement like the neurodiversity movement. 

 

“Neuroscientific understandings may thereby support the continued neglect of the socio-structural contexts that shape actions, perceptions, and emotions.”

            ~ O’Connor and Joffe 2013

“Explanations for differences between prototypic and nonprototypic groups use the former to explain the latter. Thus, in brain-imaging studies, nonprototypic groups are described as demonstrating more versus less task-related activity — where more and less are always in reference to the prototypic group.”

            ~Gernsbacher 2007

            These final two quotes remind us that while future research in autism and other neurological conditions has a lot of potential to instigate change and help propel the neurodiversity movement forward, the negative and deficit-based bias associated with social perceptions of autism also translate into current autism research. Gernsbacher’s quote highlights the current emphasis placed on neurotypical qualities and behaviors in scientific research through descriptions and explanations of differences between typical and divergent brains in.  This framing of differences is likely based in the deficit models of autism and other neurological conditions, and it is important to re-think how scientists describe and analyze results for future studies to decrease this bias.  Furthermore, O’Connor and Joffe remind us that scientific research is not as objective as we may think, and that scientists must think critically about the sociostructural contexts that create research opportunities.  While reframing and changing the perception of autism in neuroscience research seems to be an incredibly promising way to help the neurodiversity movement, it is important to remember that current research is based on a very different model of difference/ disability and change will take much time and effort. 

 

CONCLUSIONS:

 

            I’d like to conclude by talking about two labs that have really led the way in terms of scientific research language, design, and reporting embracing the neurodiversity paradigm and movement.  Laurent Mottron, a tenured professor and director of the Center for Excellence in Pervasive and Developmental Disorders at University of Montreal wrote a few of the articles critiquing current techniques and conclusions drawn from them in the autism field.  Additionally, he employs multiple autistic scientists in his lab and has described one of them in particular as being a leader in thinking about autism as a different rather than as something that needs a cure.  His lab has published papers on autistic cognition, intelligence, enhanced visual functioning, and changing the perception of autism.  Another important group of researchers are those in the Gernsbacher Lab.  Morton Ann Gernsbacher is the mother of an autistic child, and studies language development in the context of autism and autistic cognition.  She is a professor at the University of Wisconsin-Madison and has served as the director of many organizations including the Association for Psychological Science.  In addition to her research, she has also written and given many talks on neurodiversity and how important it is that scientists do not reflect inherent negative biases towards disorders when presenting their results, some quotes from her work were used throughout this essay.  Laurent Mottron and Morton Ann Gernsbacher were both critically important and influential to the previously described Nature edition in autism, and they are both working to study autism in a new manner and change the narratives and perceptions of autism in scientific research.

            These groups of reflections and quotations reflect the different perspectives currently in blog posts, as well as academic articles and books, about neurodiversity and autism.  My goal in using this style was to utilize disability studies theories and frameworks to critique current neuroscience research related to autism as well as to understand how the neurodiversity movement can impact how scientists and researchers view the “disorders”, like autism, that they study.  Scientific research has a large amount of power within our society, and while there is a long way to go before the research being done on autism reflects the neurodiversity, neuroscience research could become an important tool that neurodiversity movement activists use as they attempt to acquire equal civil rights, acceptance, respect, and social inclusion for neurodivergent people.      

 

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