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Reflections on Neurodiversity, Testing, and Accommodations

Sophie's picture

Here are my reflections after this past week’s classes and readings/videos. I hope you like them and find them thought-provoking! 

I was thinking about the definitions of neurodivergent and neurotypical. Nick Walker defines both as centered around the “societal standards of “normal.”” This makes me think about how different cultures have different societal norms, including norms about which behaviors and ways of thinking and talking are acceptable. This means that who/what is considered neurodivergent differs by culture. Here, “culture” means cultures of different institutions, families, countries, friend groups, etc. For example, in Autistic culture, Autistic people are of course accepted and respected. One would think that neurodivergent people would be more respected and nurtured in medical/scientific settings but, as we’ve all seen, that is unfortunately not the case. As a neuroscientist and researcher, I wonder about my own field. I know that the world of research has not been very inclusive of neurodivergent people in the past (re: pathologization), but I’m sure there are small pockets of inclusivity here and there in certain labs. Which labs could these be? How could one find them? 

I was thinking about why neurotypical people are considered dominant over neurodivergent people. I thought it’s because NTs are the majority, but I think it’s more complicated than that because the majority does not always hold more power. For example, white people are in the minority (worldwide) yet racism targets Black and brown people. What societal structures/systems have, historically and currently, contributed to NTs’ dominance? What would the world be like if NDs were the majority? 

I also know that there are innumerable barriers people face in their attempts to getting tested and diagnosed with neurological conditions, based in racism, classism, sexism, and ableism (and others?). For example, tests are extraordinarily expensive (class barrier) and take lots of time for the diagnostician to administer and process (a more general barrier). How can we make the diagnostic process better? Obviously a big answer is “make tests cheaper” but I’m sure psychologists/neurologists would not accept being paid less (which is its own issue, for another time). What can we do? Additionally, at least for autism and ADHD, the tests select for male traits and against the more subtle female traits (due to a whole host of reasons such as additional biases in research), leading to women being underdiagnosed and misdiagnosed more often than men and diagnosed later than men (on average). How can we make the tests more versatile/accurate? The obvious answer, at least for me, is “do more research with autistic women and girls” and “train diagnosticians better” and “change the tests” but how could we do any of this with the current lack of women diagnosed with autism and ADHD and lack of data on them? It’s a self-fulfilling cycle. 

One last question. Where is the line between something being hard to use and something being inaccessible in an ableist way? 


aconn's picture

Thank you for your post, it is very thought provoking, and I'm stuck on the last question. I think that some things are hard to use, and the ableism lies in access and access to knowledge. I thought of access to technology as the first example of this: the repair and maintenance of electronics is largely gated in access. If someone wanted to add features to a device that wasn't installed or requires breaking warranty, then companies restrict the 'know-how' to prevent individuals from doing so. Electronics require you to send it in to a technician or get it replaced rather than fixing it. Apply this to electronics-based mobility devices and tools, and you get a system that very obviously sees disability AND disability technology as something to be replaced rather than maintained. Of course, companies like Apple and Microsoft are starting to offer accessibility access, but their instutional reforms are slow to uptake compared to the rate at which technology is created and normalized.

This mentality can be seen in diagnoses as well. I do not have whole solutions, but starting with the diagnosticians seems like a good start. Self-diagnosis is tricky to propose, but I think that an alternative form of diagnosis that relies on self-testimony over tests needs to take root. The tests cannot account for all human experiences, and as a result many practices of therapy cannot account for that diversity.

Sarina's picture

You have raised some really interesting questions, Sophie. I am also curious about how neurodivergence is perceived in other cultures and how it has been viewed throughout history. I'm wondering how perceptions of neurodivergence may change in communities in which there is a high prevalence of certain types of neurodivergence (due to it being genetic, for example) or where neurodiversity is greater (or simply more recognized and accepted).

I found a few articles that discuss the ways in which neurodivergence has been both stigmatized and valued depending on the cultural context and time period. Mel Green, the author of "Neurodiversity: What is it and what does it look like across races?", brings up the important point that many standards of diagnosis are based on Western norms. For example, maintaining direct eye contact is seen as rude in some cultures, yet this lack of eye contact is a trait that many medical professionals look out for when determining whether someone is autistic. Another point Green made that I think is interesting is how dyslexia "is based upon the social value that everyone should be able to read." In the past, the ability to read depended more on one's socioeconomic status than his or her neurological ability. I find it interesting how a cultural shift in how we communicate generated a whole new category of diagnosis. Green also mentions how biases may also play a role in the disparities in diagnosis rates among different races. I am again wondering how biases of medical professionals can influence the diagnoses they make and how we can combat these biases.

Also, I read a second article by Thomas Armstrong called "The Cultural Context of Neurodiversity." Armstong provides various examples of how certain forms of neurodivergence have been seen as assets in particular cultures. One example Armstong discusses is how OCD was seen as a positive trait for priests performing sacrificial rituals to have in ancient societies. These rituals needed to be performed in precisely the ways that the religious texts outlined or else they would have to be repeated from the beginning. It is interesting how the same forms of neurodivergence can be either valued or stigmatized depending on the cultural context and time period.



Smawad's picture

Thank you so much for sharing your thoughts, Sophie! You made excellent points. I especially liked the one about how neurodivergents are perceived in other cultures, and how "One would think that neurodivergent people would be more respected and nurtured in medical/scientific settings." From what I have seen back home, culturally, neurodivergents are hypervisible, and excluded, especially those with cognitive or psychological disability. Also, everyone is taught to speak and act a certain way around neurodivergents, which emphasizes my previous point about hypervisibility. People view that as respecting neurodivergents, meanwhile they continue to exclude them from other cultural, political, and medical aspects. 

To reply to your point about improving the diagnostic process, in my opinion, disability studies is the way to improve it! If diagnosticians, psychiatrists, physicians, and anyone going into the health field includes disability studies a part of their courses in graduate or medical school, we would be heading the right way towards improvement and away from the ableist society we live in.