An Archaeology of Funding Applications

As I was going over my folders recently in search of a paragraph I remembered writing at some point and of which I lost track, I came across something interesting. It was a letter I sent to the head of a funding body to which I applied for some research funding a year or so ago.

I was upset when I wrote this letter; my application has just been rejected. But my dismay at this professional failure was overshadowed, I recall, by the reasons for the rejection, as these were specified by my application’s reviewer. These stem out for my response letter, so there is really no need to repeat them. In reading the referee’s comments now, by the way, I do see they weren’t really all that bad. But they were certainly misinformed. And so my ‘letter of complaint’ is still, I feel, quite valid.

I have no real reason to put it up here, except that when reading it now, I found it rather enjoyable. A pretty decent piece of writing, if I may say so myself. A shame that only one person would get to read it, I thought (especially since that person, namely the head of the funding body, has brushed it aside with calm). And yes, it does say something, perhaps, about the decision-making processes that go behind research funding. Not that they’re necessarily bad. But maybe, sometimes, they might be just a bit misinformed.

Dear sir / madam,

I am writing to you with regards to the resubmission of my grant proposal entitled “Experiencing Emotion and Emotional Experiences among Individuals with Autism”. I would like to humbly urge the committee to reconsider its decision to reject the grant proposal, for the reasons stated below.

While I honestly appreciate the reviewer’s comments, I would like to express my sincere doubt as to whether he/she is sufficiently familiar with the field of autism to reach a qualified evaluation of the worth of my proposal, and its possible feasibility and contribution to the field in question.

Autism is a spectrum of conditions with differing levels of severity and social functioning. In his/her review, the reviewer uses the term “highly autistic” twice, and once uses “severely autistic”; I myself have not used neither of these in my proposal! My proposal merely expresses a desire to study autistic people. Indeed, if I only meant to include severely autistic participants, some reformulations of the proposal would be in order, but that was never my intention. I fear the entire evaluation of my proposal was made on the basis of this very false reading.

Furthermore, I must admit that I was somewhat shocked to learn that according to the reviewer, “…in severely autistic individuals, emotions are a “black box” that scientists, therapists, teachers, and parents struggle to untangle”. It would appear that two decades of autism self-advocacy and activism, promoting notions of diversity and understanding, and combating prevalent stereotypes– have all escaped the reviewer entirely. I would therefore like to offer a crucial correction:

While it is certainly true that managing, discerning, expressing and interpreting emotions may pose considerable challenges for autistic people, to argue that their emotions are in any way a “black box” is alarmingly misinformed, and frighteningly reminiscent of Bruno Bettleheim’s destructive and long abandoned “empty fortress” metaphor (1967). I urge the committee to find one recent work by a researcher of autism that would even come close to making such an unfounded claim.

Having studied autism and engaging in meaningful conversations with autistic individuals for nearly two years now, I can state without doubt that many (although not all) adults with autism are reflexive, communicative, and articulate social agents, given the right conditions. They are thus in a very good position to speak and reflect about their emotional states and experiences – and indeed about their difficulties with emotions. In fact, they are in a better position to do so than anyone else is, and they should be given a chance to express their expertise, and to contribute to the academic discourse which too often revolves around them, but fails to include them.

This is particularly true given the unfortunately popular prejudice that emotional experiences of autistic people are not even worth studying, because they are trapped in some imaginary, impenetrable box (and my theoretical perspective views emotions as intrinsically relational… how could a box hold a connection?)

Yes, emotions are complex, in autistics and neurotypicals alike. Yes, neither the natural sciences nor the social sciences have any definitive answers as to what emotions “are” (although several anthropologists have developed fantastic theories to that extent). But should that prevent us from studying them, from trying to make sense of them, from appreciating their importance in people’s lives? Also, since when do social anthropologists shy away from difficult questions, simply because “scientists, therapists, teachers, and parents” struggle with their meaning? If anything, that is in itself a good enough reason to do research!

According to the reviewer, “there is a huge literature regarding idioms of distress, for example, that should be taken into consideration.” Why? Why is it assumed that distress must be a prominent theme in this work? There is an equally large body of literature on love, friendship, sexual attraction, pride, or compassion; and none of which were explicitly mentioned in my proposal, which deals with emotional states at large. Distress? Yes, of course, that too. But this particular emotional state will only outweigh others in my work if it is found to outweigh others in my participants’ lives. My preliminary research shows this is not the case.

Finally, the reviewer questions whether “simply following subjects through their online activities or attending an autistic conference” will provide me with sufficient and reliable ethnographic data. My response is simple; No, it will not. That is why many more methods – which the reviewer for some reason chooses to ignore completely – are mentioned and elaborated on in my proposal. They include accompanying interlocutors in their daily lives, i.e. family life, work, studies, and autism related social activities, while forming meaningful relationships with them based on mutual respect; as well as conducting semi-structured in-depth interviews. The online aspect of my research is crucial and exciting – but is quite far from being my main source of data. Why would the reviewer ignore all these? I honestly do not know.

I appreciate that I am still in the beginning of my career, and still have a lot to learn. I acknowledge that my proposal is not perfect, and might be improved in various ways. I respect the opinions of those with more knowledge and experience than I. However, in this case I feel my hard work was not taken under serious consideration, and was rejected offhandedly due to a lack of familiarity with the field of study in question. I therefore respectfully ask that my proposal goes to the next stage of selection, to be read and judged by someone more engaged with the anthropological study of autism and/or emotions. Thank you, and I look forward to hearing back from you soon.

Best regards,

Questioning prescriptive power: A re-thinking of theory of mind

(Over the next couple of months, I will be hosting a series of guest posts on the social study of autism. In this second post of the series, it’s great to have Matt Willis. Matt has recently completed an honour’s degree in social anthropology at La Trobe University in Australia. His research, which was based on a careful reading of prior research and literature, focused on autism and the anthropological perspective.)

I’m going to be writing about the unbalanced construction of autism, drawing primarily on theory of mind as an example. My aim is to get people thinking about how cognitive theories, such as theory of mind, are constructed and applied by neurotypical people to autistic people, or those labelled as autistic. How does this affect the validity of the theories? Who has the power in the decisions to use and how to apply these theories?

Before I dive into that though, I want to establish a precedent to my point: intelligence tests. Anthropologists and psychologists, among others, are generally critical of the practise of applying intelligence tests developed in one culture to people in another. Psychologist Patricia Greenfield considered ability tests “cultural genres” in that their construction is determined by particular cultural symbols and normalised practices. Taking one cultural genre and trying to superimpose it on a different culture is like trying to fit a square block into a circular hole—it’s not going to work! Robert Sternberg outlines a bunch of great reasons as to why this is the case, including different cultural evaluations of what ‘smart’ means, the familiarity of assessment materials and delivery, children might develop skills that serve them better in their environments than other environments, and people from different cultures might simply think about things quite differently (see reference list at the end of the post if you’re interested in reading more).

Now, these tests don’t necessarily have much traction within the cultural genres in which they are constructed either (if you even accept the notion of “cultural genres”), but that’s another can of worms. The question is: what does any of this have to do with autism (aside from the fact that autistic people likely frequently have to take such tests and are then erroneously labelled as this or that)? Consider once more the idea of constructing an aptitude test based on a particular cultural genre and attempting to use this test to explain the abilities of a group of people from a different cultural genre. Who is constructing this test? Why have they done so? Why are they applying it in the context of a different cultural genre? In other words, where is the power and how is it being used?

Theory of mind (the theory that typical minds have an ability to perceive states of mind in other people, such as intentions, knowledge, and desires) is frequently said to be impaired in autistic people. But why? Consider this: neurotypical children commonly fail theory of mind tests. In most of these instances, attempts are made to find alternative explanations and discover other instances in which the kind of empathy associated with theory of mind is present. Yet people who are labelled as, or in the process of being labelled as, autistic generally don’t receive the same scrutiny. It’s more a case of ‘Alright, there you, there’s the evidence!’

Damien Milton, an autistic person himself, as well as a doctoral social researcher at Birmingham University, has written a great critique of theory of mind, entitled On the Ontological Status of Autism: the ‘Double Empathy Problem’. In this article, Milton points out that many autistic people are made to feel uncomfortable or threatened during theory of mind tests because of the way the test is administered. This highlights, fairly strongly, the fact that tests like theory of mind are designed and implemented by neurotypical people, based on what they believe is appropriate methodology. Now, I’m certainly not trying to suggest that autism is equivalent to a culture, although different movements surrounding autism may constitute cultures. Even so, I think theory of mind is potentially another kind of invasive aptitude test, constructed by one group of actors and imposed upon a separate group of actors.

This is not to say that a degree of absence in theory of mind might not be observed in an autistic person. I have an autistic friend who has readily admitted that it is somewhat the case for him. But that “somewhat” is important. Ben has already written about the diversity of autism. We all know that autism is not homogenous, that autistic people are as different from one another as are neurotypical people from each other. You cannot apply one, totalising theory to a diverse group of people. Nor can you ignore the fact that absences of theory of mind may very well manifest to some degree in many neurotypical people.

In Milton’s article, his main point is that the neurotypical researchers who investigate the presence of theory of mind have a distinct position of power in deciding whether their fellow communicator is perceiving states of mind, or empathy. Indeed, neurotypical people in general hold this power. The kind of empathy under question is determined by neurotypical people, based on what they believe is normal behaviour. Under this model, a neurotypical person’s empathy is difficult for an autistic individual to grasp. Yet, as Milton argues, it is equally true that an autistic person’s empathy is difficult for a neurotypical person to grasp. Communication works both ways, and the rules of communication should not be determined by only one actor’s ideas of what is normal and what is not.

So what can we say about theory of mind after all this? That it is constructed by neurotypical people, assumes that neurotypical cognizance (if there is such a thing at all) is free from an absence of theory of mind, assumes that autistic people universally display a degree of an absence of theory of mind, yet does not seem to engage in communication with autistic people on level ground. Therefore, the foundation upon which the notion that autistic people have a deficit in theory of mind is built, is not as solid as many people assume.

What this all means for me is this: people need to stop generalising cognitive normalcy and start considering that many people communicate, think, and feel in different ‘non-typical’ ways. These ways are not invalid and are not representative of entire categorisations of people. Put another way: neurodiversity deserves all the momentum it can get.

Publications cited

Milton, Damien 2012, ‘On the ontological status of autism: the “double empathy problem”’, Disability & Society, vol. 27, no. 6, pp. 883-887.

Greendfield, Patricia 1997 ‘You can’t take it with you: why ability assessments don’t cross cultures’, American Psychologist, vol. 52, no. 10, pp. 1115-1124, < http://www.ecdgroup.com/download/sa1yctii.pdf&gt;

Sternberg, Robert J. 2008, ‘Culture, instruction, and assessment’, in J Elliot and E Grigorenko (eds.), Western Psychological and Educational Theory in Diverse Contexts, Routledge, Oxon, pp. 5-22.

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