Why Should a NT Anthropologist Try to Study Autism Anyway?

Recently, the morality and potential contribution of my project were put into question by a member of the autism community. The main argument laid forward (briefly; this was twitter after all) was that being neurotypical, I could never understand – presumably not even to an extent – what being autistic is like, and so my attempts are inevitably doomed to fail. Not only that, it was suggested that my attempts could actually be harmful, as any desire to discuss autism as an experience – without ever having experienced it myself – are likely to involve at least some degree of Othering; “The ultimate form of othering” was in fact the exact words used. I’ve considered this before, of course, but never had this thrown at me with such explicitness. And I had to admit that this was a very legitimate concern.

Not only that, my interlocutor doubted that my project could in any way be beneficial for the autistic community, as any advancement in the autistic plight to acceptance and understanding can only come from within the autistic community itself, through self-advocacy and social activism.

These very fair allegations stuck with me for the two weeks that have since then passed.

So I decided to take a break from my Autism in Movies series, and write about this dilemma instead.

First, here is my reply to this person via email (with very slight changes):

“Hi …,

Thanks for giving me this opportunity to try and convince you about the possible contribution my research (and others like mine) could have. Like I said in our short twitter exchange, I think that in any field, disagreement is both inevitable and potentially productive. My goal here is not only to try and change your mind – but also to allow you to try and change mine. My ultimate motivation is to understand the various perspectives of autistic people (yes, these are infinitely varied of course). If these perspectives include an objection to the very idea of my research, well, that’s something I’m going to have to take very seriously indeed. But first thing’s first.

Let me start by referring to your comment that the word ‘autistic’ in ‘a social anthropologist trying to figure out what being autistic actually means’ couldn’t be replaced with any other group and still be taken seriously. I disagree, primarily because this is precisely what social anthropology does! It’s about trying to make sense of perspectives, motivations, beliefs, and behaviours that are different from one’s own; I have colleagues trying to make sense of the role of music and dance in the beliefs of Krishna worshippers in India, of how sheep herders in Tibet understand the state and its institutions, and of how homosexual university students in South Korea interpret masculinity. The idea is not to document these groups – hasn’t been for decades. The idea is to properly understand them. What drives them, why they believe what they do, and how they make sense of their lives and their surroundings; in other words, what their experience of the world is like.

My own motivation is similar, but different. People of different cultures differ in many aspects – but their neurology is (presumably) similar. But autistic people and neurotypical people are different in a different way – our brains work differently (again, presumably… and then there are many other differences as well of course, big and small). Questions such as those posed above need to be addressed from a different angle, rethought, and constantly questioned – but I for one believe they are still very much worth asking.

How do autistic people in the UK experience the world around them? How do they experience their own sense of self and identity? How do autistic people experience socializing? How do they experience objects? How do they experience their own bodies? None of these questions have easy or straightforward answers, of course; not even close. It would take a book – in fact it WILL take a book – to only start to try and address them. It will require great care, so as not to generalize, simplify, reduce, fetishize, romanticize, offend, or misrepresent. I have taken a very hard task upon myself; I’m aware of the responsibility this entails.

But I do believe this can be done. No, I will never know what being autistic is like. To do this, I will have had to be born autistic. However, I am convinced that by talking to enough autistic people, asking the right questions, listening very carefully to the answers, reading autistic authors’ books and blogs, spending significant amounts of time with autistic people – I can come to appreciate, TO SOME EXTENT – what being autistic is like FOR THEM.

So how is this helpful? Because few – very few – neurotypical people will ever take nearly as much time to think about what being autistic is like as I do. Because even if they did, they haven’t had the training that I had, which allows me to proceed with extreme caution in this rather delicate task of representing an entire population of people. To consider the various social and cultural factors that take part in making autism what it is. To critically assess research in neuroscience, psychology, genetics etc., and tease out the valuable knowledge from the utter rubbish. I have spent the greater part of 8 years learning to do this. There’s still a lot I don’t know, but I suppose I am still more qualified for this sort of work than many other people. I can’t do it perfectly – I’m going to make mistakes here and there, I’m afraid. But I hope I can do it well nonetheless. Several other people could; But very few others actually DO.

So how IS this helpful? Hopefully, people – NT people, that is: parents, partners, teachers, therapists, researchers, employers, journalists, policy makers – could read my book and understand autism better. Simple as that. Not the genetics of it, or its cognitive mechanisms, or the neurochemistry involved, or the various treatments that are offered. But the actual experience; what being autistic is LIKE. What difficulties this entails. What sorts of satisfaction. In what ways precisely is autism a challenge. In what ways is it a gift. And what society can and should do to minimize the difficulties and allow for people’s individual talents to emerge. Whether you are a parent to an autistic child or the prime minister of a large country – you need to know these sorts of things. It would be my role to try and inform them.

Why shouldn’t autistic people do this work? Well they should, and they do. Often quite brilliantly. In some ways, they do it better than I ever could. My contribution lies in my training as a social scientist, my close familiarity with research methods, social theory, ethics etc.; and in the fact that I am neurotypical, which possibly – possibly – puts me in a position of ally and mediator. Mediation is important.

Finally, you mentioned my study sounds like the ultimate form of Othering. That was a blow!! This is what we (social anthropologists) invariably try so hard to avoid! And it’s always a big risk. I guess all I have to say about it is this: A study such as mine COULD be very Othering. But it doesn’t HAVE to be. It’s not a question of what research you do; but of how you do it.

… “

Out of the many, many concerns my letter addresses, the one I’m least confident about is the part where I explain what my own contribution as a neurotypical could be; and why it was morally acceptable that I should engage in this sort of work. And it is this question that I still most struggle with. Am I not just trespassing on other people’s domain? In choosing autism as my topic of interest, am I merely exploiting autism and autistic people? Is there even a slight chance of me doing a better job at this than someone who is actually on the autistic spectrum?

After all, there are indeed quite a few social scientists who are themselves autistic and already do brilliant work in studying autism from this particular angle; names that come to mind are Dawn Prince-Hughes, Donna Williams, Dinah Murray, Damian Milton, and Rachel Cohen-Rottenberg; most likely among many others. And then there are the many, many self-advocates and bloggers such as Lydia Brown, Kassiane S., Sparrow Rose Jones and others who may not be social scientists per se, but do fantastic work in studying and analyzing autism from a social and cultural perspective nonetheless.

These researchers and thinkers are all brilliant at what they do; they are creative, careful, diligent, honest, eloquent, and passionate. They may be autistic, but if any neurotypical reader finds it hard to relate to their ideas for some reason, the problem is with the reader. Absolutely no mediation is required between the ideas of Dawn Prince Hughes, for example, and a neurotypical reader – despite her making no apologies for her unique style of doing social science.

So what am I doing in this field? What’s my contribution? Where’s the added value of my work?

I suppose for the time being, I can’t really answer this question; I honestly don’t know. But hopefully, by the time I will have completed my research and written my thesis, I will have learned enough, thought enough, and hopefully I will not only have realized but have in fact demonstrated that I am not a stowaway on the autism wagon. That I can contribute. And that, as the principle precept of health care and research mandates, I will at the very least ‘do no harm’. The only thing I can say with any certainty is that the burden of proof, in this matter, lies completely on me.

I would love to hear everyone’s thoughts on this.

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Temple Grandin

Temple Grandin (2010)

Temple Grandin is probably the best known autistic person out there; to say that she’s a global celebrity would not be going too far. She has written several bestselling books, she is an extremely respected professional in her field, she is often cited and quoted in all sorts of discussions about autism (popular and journalistic, as well as academic) and she gives frequent lectures and interviews on various media. But maybe the most significant contribution to her celebrity status outside the autism community (and the cattle industry) is this 2010 film which is based on her memoir.  The first time I watched this film was when it came out. I knew very little of autism then, and I have never met an autistic person (as far as I knew). And at the time, I loved Temple Grandin. In fact, I have a strong feeling that (warning: cliché) this film was one of the reasons that made me want to study autism in the first place.

2010_temple_grandin_001

I was slightly hesitant before watching it again earlier this week. Was it really that good, I asked myself, or was I simply too naïve back then? Won’t I be terribly disappointed? I’m a bit more knowledgeable about autism now, I’m a lot more suspicious, and I’m also a bit cynical. In short, I was afraid to find that Temple Grandin wasn’t half as good as I remembered it. And seeing as I know something now of the actual person who inspired this film (not personally, unfortunately, but from reading her books and watching her lectures), I was worried of finding that Hollywood – as it often does – had done her an injustice.

I was happy to find I was wrong.

I mean yes, ok, a lot was left out (obviously), and yes, the film came short of offering a complete account of the array of different aspects of autism (again, of course it would), but all in all, I felt Temple Grandin the movie is a beautiful, sensitive, and honest telling of a remarkable story about a truly exceptional person. As far as representations go, I thought the makers did a very good job. The autistic protagonist mostly makes her own choices, and while the love and care of those around her are framed as indispensable for her growth and achievement, these are acknowledged as secondary to Temple’s own intelligence, talent, and formidable sense of self-worth. The makers of Temple were not (as is often the case) rushing to spread some simplistic message about autism that downplays its disabling features, or reducing it to a generic form of mental disability that stands for weakness, dependence, or deficit. “Different, not less” was actually the film’s catch phrase, and the movie remained loyal to this message from the beginning.

In other words, I loved Temple Grandin. Possibly even more so now than when I watched it first.

*

Temple Grandin was born in 1947, merely 4 years after autism was named and identified for the very first time. In a way, her life story can be said to parallel the history of autism itself.

Often, when people think of autism, they imagine a sort of static quality that exists solely within the confines of the body. A biological condition that if not properly understood by science, it is only because we still lack in scientific knowledge; that the truth is still unveiled, but science is slowly and surely progressing towards this very goal. This is a somewhat narrow view of a much more complicated reality. Like any medical category, and perhaps even more so, autism is as susceptible to historical, social and cultural conditions as it is to biological processes in the genes or in-utero. After all, it takes people to recognize autism, define it, study it, explain it, treat it, experience it, represent it, and make sense of it. And those people come from different cultures, subscribe to different theories, value different methods of inquiry, and have different perspectives about what’s desirable, what’s normal, what’s important and what’s right. As time goes by, as society changes, autism, in a very real sense, changes with it.

Who are those people who arguably have so much influence over an apparently unbending neurological condition? Well, it’s quite a long list, actually. Neuroscientists of various sub-disciplines (cognitive neuroscience, neurophysiology, neurochemistry etc.), psychiatrists, and geneticists usually make up the group in charge of scientific research into autism, which obviously has a massive effect on how it is framed, categorized, understood and treated. Epidemiologists make a huge impact in determining ­and communicating the prevalence rates of autism. Psychologists are responsible for characterizing its cognitive and developmental aspects. There are speech therapists, occupational therapists and physical therapists who possibly know best which therapies work and which don’t (not that they are all in agreement). There are teachers in charge of instructing and educating autistic children and adults. There are those who provide welfare services, devise policy, and design legislation. There are those who advocate autism awareness and acceptance, and those who advocate the search for a cure. There are those who spend their everyday lives with autistic people, those who love them and know them best, namely their parents, siblings, partners, children or caregivers. There are those who write autism into books, make films, or write about it in newspapers and journals. There are those who study it from a humanities or social science perspective – like me. And ultimately, of course, there are those who are themselves autistic; living, talking, writing, acting, connecting, and making; they are sons, daughters, parents, partners, and friends; some are teachers, writers, researchers and artists; and they have significant influence on how autism is understood, treated, explained, experienced and even performed. Autism is therefore anything but static – it is as dynamic, fluid, and mutable as social categories get.

So wait, who are the real experts then? Well, they all are, but you know what happens when you have too many experts in one place. You get tension, disagreement, and conflict. And autism, with its myriad sorts of experts, is a fertile breeding ground for exactly that. In one of the very best books written about autism (on my opinion, that is), Gil Eyal and his colleagues, a team of sociologists, take a deep and thoughtful look into this field of contention, which they call (and named their book after) “The Autism Matrix”. Give it a read if you have the time. It’s not an easy read, but it’s well worth your effort.

Temple Grandin offers a wonderful insight into how these disagreements between the various sorts of experts come about.

The earliest scene in the movie, chronologically, depicts four-year-old Temple and her mother in a meeting with the doctor – most likely a psychiatrist. He diagnoses Temple as having autism. At that time autism diagnoses were scarce, and autistic children of Temple’s generation were very unlikely to be diagnosed as autistic. The clinician is thus arguably very well read and well trained, being familiar with such a “rare” new condition. Yet he still considers autism as interchangeable with childhood schizophrenia; this was an extremely common misconception at the time, and it remained common for decades more to come. Well trained as he may be, the doctor regards autism as hopeless and destructive. Temple will likely never speak, he says. It’s caused by a lack of bond between mother and child, he reproaches. And he recommends she should be institutionalized. The psychiatrist represents the common scientific perception of the time. He is an expert.

But Temple’s mother – a strong, educated, intelligent, and outspoken woman –rejects the doctor’s prognosis, and refuses to accept that her daughter will amount to nothing. She thus effectively opposes the psychiatrist’s expertise, and situates herself and her own understanding of her daughter’s condition – namely her own expertise as a mother – as equal, if not superior to that of the trained physician. Decades later, such opposition by parents will become widespread, as parents begin to collectively question the medical establishment’s approach to autism, its prognosis, and most importantly – its etiology. So that in contrast to what most experts claimed during the 1940s, 50s, 60s and 70s (and in some parts of the world still do), mothers knew they didn’t cause their children’s autism. It took a while for medical professionals to accept this as true – and nowadays, the fact that autism is innate is near consensus.

Another scene shows Temple’s team of school teachers frustrated by her behaviour. They consider expelling her. Only her science teacher realizes that her “bad” behaviour is not an integral part of her condition; but a result of a lack of support and care in the school environment. He takes it upon himself to mentor her, challenge her, and indeed love her.  “Just a science teacher”, but nevertheless an expert in his own right, he has a huge positive effect on her life.

In college, a psychologist interviews Temple about her squeeze machine; utterly oblivious to the communication barrier between them, he asserts it has a sexual purpose, and forbids her to use it. Her mother, concerned of the impression that Temple’s use of her machine might create among her peers, follows suit. This time it is Temple’s aunt that insists that if the machine helps Temple, it must be allowed, and encourages her niece to devise an experiment to demonstrate that the machine is in fact helpful. The authority of the mental health specialist is thus undermined by a caring relative, who shows herself to be more of an expert then he is, at least in this regard. When Temple conducts her own study as to the possible benefits of her squeeze machine, a remarkable social process unfolds: she situates herself as an expert on autism not only by being autistic, but also by employing scientific methods to substantiate her assertions. The division between experiential knowledge and scientific fact is becoming blurred.

In the very last scene, we witness what is to become a revolution in autism expertise, as Temple’s own experiences, theories, ideas, and perceptions of autism and its meaning impress heavily on the conference participants, who very symbolically banish the “expert” speaker from stage as they ask her to take his place and speak in his stead. Autism self-advocacy is born.

It is important to remember that no type of expertise ever fully replaces another. Parents’ and educators’ expertise gained its rightful position alongside that of doctors and psychologists. Neurologists and geneticists (the more recent sciences) followed. Therapists and advocates, policy makers and social scientists, and not least autistic people all claim their right to make assertions, suggest theories, devise treatments, design priorities, and speak the ‘truth’. But truth is a problematic notion. One can never be sure that an objective ‘truth’ about autism can ever really be achieved. Instead, we are likely to witness an ever-lasting struggle between opposing or simply differently-focused discourses. A dynamic, ceaseless, complicated “matrix of expertise”, in the course of which the meaning of autism is never definitively unveiled, but is instead constantly negotiated.

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