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):
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.