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.
Related Posts:
The Autism Anthropologist 
I think your project can be valuable and produce interesting results. Do I think it’s possible to truly think from another persons perspective? To be honest, I don’t think it really matters. The benefit to me of your project is that it can create dialog. I think the value resides in that dialog. Through inquiry, you learn, listen. By questioning, you give others a chance to answer, provide insights into their experiences…the back and forth of discussion, of research, creates concepts we can share, contemplate.
Also: I try to think from NT perspectives all the time. I’m constantly trying to piece together how social interactions “feel” to an NT…I don’t think it’s wrong to try that or misguided. I may never truly replicate what it’s like, but that is (for me) beside the point. The trying yields new understandings…that in-itself is valuable.
Thanks so much for this comment M Kelter.
It’s funny; when you wrote you often try to figure out how social interactions feel to an NT, my immediate thought was “well, depends on the NT (and, of course, the interaction)”. Which naturally only reminded me that experiences are always entirely different among autistic people as well. This brought me right back to the question I’m struggling with most these days: is there any sort of commonality between everyone who is autistic? These days, I tend to think the answer is No – or at least Not Really. So this makes my job harder – but in that good way.
I love the point you made, that trying to understand is in itself productive whether or not one is entirely successful. Thanks for that.
I would say I empathize with your correspondent (… I like using that phrase if only because certain organizations would have the public believe I am incapable of writing it sincerely), but am cautiously optimistic.
I see the real dangers of this project. We’ve had allistic people write about the autism community many times and do us grave disservices. We’ve had them pretend that the only autism community is among those who are “high-functioning,” and that “low functioning” people would surely want a cure if only they could communicate it (which isn’t true and is also very convenient how the Able Saviors want to speak for people who they’ve denied communication skills to). We’ve had them paint us all as angry children who are just too naive to see that the curebies are just trying to do what’s for our own good. We’ve had them pretend that our community is harmful because it insulates us from the “real world.” We’ve had them claim that we don’t face “real oppression,” and that we’re “co-opting social justice language.”
We’ve had them insist that we’re devoid of empathy and sympathize more with our murderers than our murdered. The hypocrisy there would be hilarious if what it meant wasn’t so terrifying.
So there’s plenty of reason to be wary. Very wary.
That said, you seem to be intending to do this right, to put autistic voices at the forefront and to do your level best to actually understand rather than cherry-pick evidence to support your preconceived biases.
So I’m cautiously optimistic. You seem to be trying to be an ally and do good for us. I hope you succeed.
If I may make one request: Please make explicit effort to include voices of autistic people who communicate exclusively or primarily in ways that are not speech. People like Amy Sequenzia and Ido Kedar. They’re the most often erased members of our community – both by aspie elitists and by allistics – and they deserve to have their voices listened to.
Thank you so much for your encouraging comment ischemgeek.
I genuinely understand your concerns. I’m aware of the disservice that was – and still is – done to autistic people in the name of academic research; though the nature and extent of the harm that it has caused is only gradually becoming clear to me. I also realize that while being aware of this is a crucial first step, it is not enough in itself.
Like you said, I do intend to try and do this right. I shall need to take great care if I want to succeed.
You’re absolutely right about me needing to also include the voices of those who do not use speech as their primary means of communication. Thank you for this advice. I’m familiar with Sequenzia’s and Kedar’s writings, among others. I do admit that at the moment, few of my research participants are non-verbal.
Maybe you could help – if you know of anyone who might be willing to take a part in my study, answer some questions, share their reflections with me, and explain to me their points of view, please ask them if they would contact me. That would be extremely helpful.
Thanks again. Hope to hear from you again soon!
You might consider contacting the Autism Women’s Network and/or the Autistic Self Advocacy Network and/or the Thinking Person’s Guide to Autism. They know a lot of autistic advocates, including those who use AAC to communicate. They will also commonly signal-amplify studies they think could be helpful to the community.
Just… hm. Trying to think of how to articulate the point without coming off insulting to you.
Please forgive bluntness. Tact has never been my strong suit. And I assure you that I don’t mean this as an insult, more as an explanation: A lot of the time when autistic people get questions from allistic people, it comes off as the allistic people expecting us to be self-narrating zoo exhibits. By which I mean they ask us questions that would not be considered appropriate or respectful of someone who is not disabled. Some that I’ve been asked, just to give you an idea, include questions about my medical history, my medications, my health, my sex life (yes, really – including questions about whether I’m into kink and pedophilia), my digestion, my toiletting and grooming habits up to and including when I was able to wipe my own behind (yes, really), whether or not I still pick my nose (again, yes, really), and assorted other questions that are neither relevant to the conversation nor respectful when coming from a complete stranger.
Other times, people ask us for advice about people we don’t know and haven’t met, because all autistics should understand people twenty years their junior and of a different gender and culture just because we’re autistic. And while many of us, me included, can and do offer general advice of the “here’s what worked and didn’t work for me when I was a kid because I don’t want your kid to go through that” variety, it’s not appropriate to expect me to single-handedly solve all of a person’s parenting problems, especially not regarding a kid I’ve never met.
Because of that, a lot of autistic people get wary of people saying they just want to ask a few questions. It’s like in winter when you get zapped from static so often that you start reflexively flinching before you touch metal. It’s not that I have something against that doorknob, in particular. It’s just that I’m zapped often enough lately that I might not be willing to risk another zap.
When you’re contacting them, I’d advise writing up a summary of your project and what you aim to accomplish. That way they know you’re looking for partners, not for self-narrating zoo exhibits. To continue the mixed simile/metaphor from above: Try to assure them you’re a plastic doorknob and not going to zap. But I think that’s something you have to do, not something I can do for you.
Thanks again for your thoughtful advice. Please, don’t worry about being blunt – I appreciate bluntness.
I almost always make sure to include a short summary of my research methods and objectives when contacting potential research participants. I do believe people have a right to know my intentions when I ask for their cooperation and help. Also, it’s actually an ethical imperative; informed consent has to be just that – informed. So whether someone contacts me (e.g., following a suggestion by a friend or family member) or I contact them, I fill them in on my plans before we go any further.
I’m shocked by some of the questions you describe being asked by researchers! I mean really… I honestly wouldn’t dream of asking such questions! But having said that, sometimes a piece of information about a person you’re interviewing becomes relevant. In this case I will hold on to this question, and only ask it when our relationship has reached a certain level of intimacy and trust. If that never happens, I just don’t ask. And I certainly wouldn’t dream of asking a very personal question right of the bat. That’s so rude!
I understand your wariness of researchers even better now.
More, wariness of questions from allistic people. Mostly it’s allistic people in general who as those things, not necessarily researchers in particular.
I am a text to speech user around 35% of the time, and a home sign user around 15% of the time and I use speech the remaining 50% of the time. I would be willing to do this.
Hi Alyosha, do you mean you would be willing to take part in my study? That would be fantastic. May I email you?
Yes, that is what I am saying. And yes, that would be okay.
That’s great. I will email you soon.
I am a NT and an anthropology student. I came across your blog and read this entry and feel motivated to respond. I’m not sure I have anything valuable to add to the discussion, but I have the desire to try…
I think the extent to which you can truly give a voice(s) to the autistic community(ies) is the same as the extent to which any anthropologist can give voice to any community. Did Nancy Schepper-Hughes propel the voices of the women in the Brazilian favela she studied in Death Without Weeping? Did Loic Wacquant give boxers a proper voice in Body and Soul?
It depends on how involved an anthropologist can get; how far the ‘participant’ in participant observation is taken, or can be taken. Wacquant actually became an apprentice boxer but Schepper-Hughes never lost a baby, not as a resident of the favela or otherwise as far as I know. Does this mean her ethnography was without value? Despite her unapologetically ‘militant’ anthropological approach being somewhat controversial, I don’t think anyone would seriously suggest her efforts made anything worse, or was without value whatsoever.
As you yourself said, you cannot become autistic. It’s not gonna happen. This doesn’t mean, given the proper ethical guidelines, your research cannot be of value. I may be biased, but I do believe that a NT anthropologist, more than any other NT researcher, is positioned as best one can be to tackle such an endeavour. This is so provided that they ensure the voices of their research participants are heard through their ethnography, and the wishes of their research participants are honoured. Any decent anthropologist will ensure this is so, for otherwise their research will be flawed and worthless. Obviously you’re keenly aware of this and eager maintain the integrity of your participants’ voices.
That’s what anthropology/ethnography is all about, and it’s why I believe a NT anthropologist is situated better than anyone else bar an autistic anthropologist to undertake this kind of research. Even though an autistic anthropologist may arguably be better situated than a NT anthropologist, I still think any considered ethnography can provide valuable insight. Let’s not forget that it’s impossible for any ethnography to be a perfect representation of its focus, and that multiple approaches with varied findings yield a more rounded big picture. Anyway, I’ve said enough.
I like just about everything that ischemgeek has to say about this.
I’d just like to suggest that you get a feel for the kind(s) of questions that it is appropriate to ask by testing them out on your (NT) family and friends first, then people you know less well, like neighbours.
If you cannot, or do not wish to, ask questions of people in your own neighbourhood, to get a feel (as an anthropologist) for what it is like for different people to live in your particular local culture, then I respectfully suggest that you might not be quite ready to start interacting with people who have very different experiences.
Are you brave enough to be a different kind of anthropologist? One who starts from the premise that all human lives are unique, and uniquely influenced by their particular environment? Rather than the kind who fails to examine their own unique circumstances, accepts them unthinkingly as the ‘normal’, ‘baseline’ experience, and compares all others as ‘exotic’ compared to themselves?
You know, I think that you might just be able to…
I guess the biggest problem I see is your own failure to recognize the bigger picture…in terms of your— the anthropologist’s—colonization in the same life-world / systems as the people you seek to understand better. The entire premise of your inquiry— since you appreciate bluntness (taking you at your word on this) — is founded on bullshit. (SEE “ON BULLSHIT”, the book, by H.G. Frankfurt for more…)
The bullshit? Well, the bullshit here which is the most in-my-face at this moment…some implicit assumptions that you seem to hold about yourself as the inquirer, “you”, a person who, although quite thoroughly colonized, chooses to inquire about others who are also colonized, chooses to inquire about the Other , without first inqiring about one’s own colonization, without first inqiring closely about the colonized Other “inside” you. It seems as though you seek to find the Other *out there* while maintaining the illusion that you understand yourself. You are no doubt well meaning, although even that concept is problematic and most always lets some of the most harmful offenders off the hook. However, I recognize patterns in your language/approach to inquiry that suggest self deception. They resemble almost exactly my own patterns, so I may be seeing little more than perceived similarities which are in fact of no value for you. I cannot say…and I cannot speak for you. I can suggest that I detect a common, human desire to connect with, and to understand….a beautiful impulse. But, yeah, carry your inquiry to its inevitable conclusion, in your imagination, first, back to the destination you started from, maybe thinking you understand something at all about the Other *outside* you while remaining obvivious to your own “inner” reality. Friend, please consider my words if you feel any reaction rising up now, any feelings, any thoughts you find yourself seizing on instantly to explain away your reaction. Because humiliation was all I could feel under similar conditions…and that feeling is near deadly painful..to a colonized mind alone with its colonized thoughts. But it is the human condition, you are in good company, you are not alone.
You are not an Other, not in the way you may imagine…or not..
The movie “Never Let Me Go” shares some insights I am getting at here…the students at center stage in the film are colonized, and can find no way to freedom. The teachers are colonized too of course, yet they see no need to find their own way to freedom. I don’t know whose lives are the more tragic ones in the film. Or in real life. This is a painful, awful process, facing all this variety of bullshit. It hurts like hell.
But don’t worry if I’m merely talking about my own subjective experiences, which may bear no resemblance to yours. I merely thought I noticed a familiar pattern. I call it bullshit. Certainty it is open for interpretation. And this comment? Well someone blunt called me on my bullshit—and their truth, although different from mine, seved to pull me straight from hell on earth. If it feels terrible, I am sorry. But not a bit sorry if it suggests to you, or to another, where an inquiry of this kind will inevitably lead…
Thanks for taking comments.
I stumbled on this web page today, serendipitously, and I recalled my part in the discussions on your blog….hope this link may be of value…the writer seems to have listened closely to others and maybe his words suggest a more helpful POV…i mean in comparison to the exceedingly blunt POV which i have already offered…
http://www.davidsmail.info/shyobj.htm
chapter 3, apparently, in a work about beliefs and illusions
Be well in peace..
Hmm. So. I decided to take my own suggestion, and turn the bullshit detection process on my own blog….as in taking my own medicine after prescribing it to others, such as your blog. And indeed I confronted the mountain of b.s. which was formerly invisible to me. In other words, I am sharing with you the reason why I have chosen to remove it from view. Nothing there of redeeming value for any but me. Painful to recognize and share…but not sharing this recognition, here, would be dishonest and potentially hurtful. Anyway, the b.s. on my former was so ubiquitous that I couldn’t sort it out from the non-b.s. until the light of reasoned discourse was directed properly. Now, I think a more accurate name for my blog would have been “Fight Club.” 😦 I apologize for my offense.
sincerely, me
(formerly known as hopefulandfree/Nobody)
Hi! I think the work you are doing on this blog is just fine. To whatever extent you can help NT’s understand autistic people better, that’s great.
My one suggestion is that you write more posts calling attention to specific writings by various (as many as possible) specific autistic people in academia. We desperately need more autistic people involved in autism research and in academic discourse about autism generally, and we need those opoenly-autistic people who are already involved in autism research to be listened to more. So, anything you can do to enhance their visibility would be great. (It would also go a long way toward addressing any concern that you are talking over autistic scholars.)
Hi Mona,
Thanks so much for your feedback! That’s a wonderful suggestion, I agree fully.
All best,
Ben