Ethos – a well-respected psychological anthropology journal – has already established itself as a very reputable publication when it comes to the social study of autism. It had actually once devoted an entire issue to the topic; and that special issue has provided us, in my view, with some of the best works on the social reality of the condition to date.
Recently, Ethos has published yet another article on autism – this time by Elizabeth Fein from Duquesne University (currently open access). It’s always exciting when a social science study about autism gets published in a major journal, and I was very much looking forward to reading it. It’s been on my to-do list for several weeks now, waiting for me for to get round to it. And now that I finally have, I thought I’d share some of my impressions.
Questioning Answers does a thing in his (excellent) blog where he reads recent papers on autism from various disciplines (mostly biomedical if I’m not mistaken) and mediates the bottom lines of these studies to his readers. It strikes me that I’m too not badly placed to do something similar in my own blog, but with regards to publications on autism from anthropology, sociology, media studies and – as in this case – psychological anthropology.
At least I think this is the discipline from which Fein’s approach can be said to have emerged. Or is it cultural psychology? I have to admit that the line between them isn’t always particularly clear to me. Well, in Fein’s bio page, under the ‘expertise’ tab, she lists the following: clinical ethnography, cultural psychology, psychological and psychiatric anthropology, neurodevelopmental disorders, and science and technology studies. So basically wherever brain, mind and society cross paths, Fein seem to be on top of it. Now that’s already a pretty decent starting from which to talk about autism.
Let me start out by saying flat out that Fein’s article is really good. Like, really good. It’s got its few possible flaws, which I will get to in a minute, but these are negligible in relation to the usefulness and persuasiveness of her arguments. Basically, Fein offers us a way to think about autism while taking into account both its biological and social-structural components. And really, this is what any of us are trying to do, with varying levels of success. If you ask me, she nailed it.
So what is Fein arguing? It’s rather simple, really. She’s saying that the condition we refer to as autism is – at least in part – shaped at the interface between a person’s natural tendencies and their social environment. When the social environment, she says, is heavily structured around various exclusionary practices, a person with certain tendencies is more likely to eventually fall within the autism category.
In other words, according to Fine, a person might, for whatever reason, find it difficult to socialise with her peers at an early age. Now, if this difficulty is unmistakably debilitating, society refers to it as a clear-cut case of autism (given the fulfillment of a whole range of other conditions, of course). But sometimes, these difficulties are relatively subtle, and could potentially go either way.
Presumably, those would be the kids who a diagnostician would be reluctant to diagnose with autism at a very young age, and would suggest a few more years of observation.
So what Fein is saying is that in many of today’s Western societies, where social relationships are most often based on choice rather than obligation, social difficulties at an early age (even subtle ones) very often lead to exclusion and loneliness. The child’s peers, to put it bluntly, don’t want to play with her. They don’t want to be her friends. And nowhere in our system is it acceptable to make her peers play with her if they don’t want to.
This social exclusion, then, in turn, leads to the exacerbation of whatever difficulties were there to begin with. The child doesn’t get to experiment in socialising. The child suffers from bullying and cruelty. And the child doesn’t have relevant role models from which to learn socially desirable codes of language and behaviour (parents and teachers can’t be seen as relevant role models, as Fein demonstrates very well, because they don’t hail from the appropriate social milieu. For example, if a 10 year old child speaks exactly like his dad, his classmates are not likely to go nuts over him).
So take a person with subtle social difficulties, add two, five, or ten years of social solitude and an absence of relevant role models, and you get a person who by now easily qualifies as being on the autism spectrum.
Fein could be said to argue this: Society’s role in shaping autism goes well beyond framing, defining and diagnosing it. It also, by means of exclusionary practices, produces more autistic people than it used to.
Fein begins her article by using this claim as a way to reject two other claims. One claim she purports to reject is that the increase in prevalence rates is entirely biological and thus ‘real’. And the second claim she rejects is that the increasing rates have everything to do with definitions and diagnostic criteria and are thus ‘not real’. This was where I had my one main grievance with this paper; at its very onset, it builds a straw-man. And why is this a straw man? Two reasons.
First, very few researchers would disagree that the increase in autism rates is at least partly the result of social processes. They may seek out genes, pollutants, or pathogenic fungi, but they still see clearly that diagnostic criteria to autism have changed. The frequent question, then, is not whether the increase is real or not, but what proportion of the increase can be explained by this moving of the goal posts, and what proportion of it is in fact grounded in biology.
Second, there is something misleading about presenting this debate as being about the question of ‘reality’ to begin with. That there are more people labelled autistic nowadays than there have been three decades ago is a fact. One researcher might explain this fact in biological terms. Another might explain it in social-cultural terms. But it’s seldom the case that one explanation is seen to question the ‘reality’ of the other. Autism is no less ‘real’ because it was diagnosed using a more recent diagnostic manual with broadened criteria. Nor is it any more ‘real’ because some gene was identified.
At its very core – and Fein is absolutely aware of this – autism is both biological and social. I don’t see a reason to maintain some sort of dichotomy between those two inseparable components of it. Not even when this dichotomy is just used as a rhetorical instrument.
Going back to the main argument, Fein makes use of three different kinds of evidence when supporting her claim. First, theories in psychology and anthropology which emphasise the role of interpersonal relationships in developing social skills. This is pretty intuitive, in fact; it’s basically the idea that practice leads to skill. This is true for football, and it’s true for socialising.
Second, she draws on work from sociology which suggests that social relationships in some societies, including the US, have become increasingly choice-based. And this, to me, is a fascinating claim when put in this context. The literature Fein refers to compares modern-day societies to something like ‘friendship-economies’ or ‘identity markets’, whereby people can be said to be ‘friendship-worthy’ or not, based on all sorts of evaluation criteria. At the basis of such an economy is the belief that friendships are voluntaristic; that people should – and do – get to choose who they’re friends with. Basically we’re talking about a free market based on the principle of supply and demand. Similarly to the way a product’s value is determined by how much consumers are willing to pay for it; in a friendship economy, a person’s value as a friend is determined by whether or not people want to be friends with them. People are products; friendships are marketable.
You’re not seen as particularly good ‘friendship material’? You’re less likely to have any friends.
Finally, Fein draws on qualitative material generated from her own conversations and encounters with people on the autism spectrum. Now, this may be my bias as a social anthropologist, but these are always the data that speak to me the most. And Fein’s data speak clearly and powerfully.
If I had to mention just one fragment from this article which I’m likely to remember for a good long time, it’s the bit where her informant, who she calls Mara, tells her about the way she imagines her afterlife (Mara is deeply religious, we’re told). Mara’s vision of heaven is a frighteningly vivid representation of the difficulties she encounters in life:
“I would bring heaven down. Everyone would be having such a good time until I got there. So [I would be told]: you know, we understand you tried, but if you could just go sit outside and not bother people that would be great.” (p.93)
This heart clenching narrative is analysed very aptly by Fein: “Even in a space where inclusion is ostensibly governed by a moral logic of rights and wrongs”, she writes, “Mara imagines herself as the eternal exception to such rules. Neither laughing with the sinners nor crying with the saints, she is banished to a place of lonely liminality.” (p.93)
Mara paints a picture in which no matter what she does, no matter how hard she tries, she can’t seem to make friends. Even in a place governed by justice and love, she would still be excluded.
Lonely and friendless, Mara grows increasingly different from her peers, increasingly emotionally volatile, increasingly vulnerable, increasingly (as Fein would have it), autistic.
To me, this argument is convincing, though it does raise very important questions, which really have to do with the nature of the thing we call autism. Basically, if we accept Fein’s claim, then we are forced to imagine autism as being on the same spectrum as non-autism; we need to imagine a space where people can cross from one category to the other, following an accumulation of social experiences.
I’m sure some people would resist this construction. But I’m fairly ok with this.
The difficulty with this, however, is when we try and explain autism in light of this view in any way that’s not completely social constructivist. If some people can step in and out of autism, then how can we discuss it in any way other than as a social category, a culturally specific label, a historically contingent concept? If autism can be subclinical, to put it in still other words, then what is the nature of subclinical autism? Is it still autism in any sense of the word? Are we suggesting an idea of borderline autism, similar to the one they apparently have in South Korea (Grinker & Cho 2013)?
And if we’re suggesting that people can become autistic during their lifetime; are we also accepting that people can cease to be autistic? Because it seems to me we can’t avoid this implication.
The implications of Fein’s argument in political terms are massive, and potentially quite upsetting. The neurodiversity movements is structured, in many ways, around the view that autism is a naturally occurring form of difference. A form of neurodevelopmental diversity. When society is introduced as a significant factor – be it friendships, therapy sessions, or indeed parenting – this could potentially undermine much of their claim to equality and acceptance.
At the same time, there’s at least one very positive implication to Fein’s model, which I wholeheartedly accept. It places the responsibility for the life-prospects of people (autistic or otherwise) on society rather than on themselves. Too much current research – into the brain, into the DNA, into the psyche – regards the individual as the locus of ability and disability; the locus of giftedness or impairment; the locus of success and the locus of failure. We do need to pay more attention to the role of society – systems, structures, institutions – in shaping people’s life outcomes. Society’s role in affording success, and in determining failure. Fein’s approach allows us to do that when it comes to autism, and that’s just great.
References:
Fein, Elizabeth. 2015. “‘No One Has to Be Your Friend’: Asperger’s Syndrome and the Vicious Cycle of Social Disorder in Late Modern Identity Markets.” Ethos 43 (1): 82–107.
Grinker, Roy Richard, and Kyungjin Cho. 2013. “Border Children: Interpreting Autism Spectrum Disorder in South Korea.” Ethos 41 (1): 46–74.
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The Autism Anthropologist 
for me the problem with all the ‘autism is csocially constructed’ aruguements is that you all seem to forget that thres more to autism than the social. if i can see a coehrent argument that unifies all the diagnostic certia for autism (and common associated traits) then maybe i could give more weight.
but as it is i find it to be incredibly lacking and im overall fed up with the social constructivist trend where everything is socially constructed, but we only talk about how marginliased peoples identities arent really real.
Many thanks for this comment.
I also think the tendency of social constructivist theorists to minimise the felt impacts of autism – or any other category they may be working on – is a genuine problem. As it happens, social scientists are better at looking at the social, and so our writings tend to emphasise that aspect over others. Similar, I suppose, to psychologists’ tendency to only look at cognitive aspects, and neuroscientists’ tendency to overemphasise brain activity.
You write “if i can see a coherent argument that unifies all the diagnostic criteria for autism (and common associated traits) then maybe i could give more weight.” I completely see your point, but here’s the thing – social constructivist theory often sees *the diagnostic criteria themselves* as emerging from a variety of specific social-cultural-historical circumstances (in other words, socially constructed…). And so it doesn’t prioritise them over, say, more obviously ‘social’ aspects of autism such as under-employment or social exclusion.
And I see why you would resent such theorisations, I absolutely do. It’s an issue I myself have often been struggling with. But I would want to emphasise that no social constructivist has ever said that what is socially constructed is in any way less real. Autism, according to this approach, is absolutely real. It’s just that its reality is shaped in the context of language, discourse, historical processes, various organisations and institutions, etc. Same as other categories which are undoubtedly real but are nevertheless said to be constructed. Such as, for example, gender.
Thanks again.
” It’s an issue I myself have often been struggling with” okay but my point is, you struggling with it doesn’t affect you in your everyday life. If peiople decide that autism is a completley socially constructed category it wont change your personal life in any meaningful way.
i get that social constructivists think that because the dx criteria cant be trusted as a source of information but to me. the diagnostic criteria is the most solid example of what the ‘construction’ of autism is. the only unifying thing we can say about autistic people is that they fit the diagnostic criteria for autism. i dont know any autistic person whos life isnt strongly impacted by sensory effects for example. there’s a significant proportion of autistic people (myself included) for whom speech delays and language difficulties (and not just in the for use in ‘social communication’ sense, just general language difficulties) affect large parts of our lives. this isnt even to go into rituals and routines and stimming and the like. i feel like if youre put it all down autism to ‘social failure’ youre kind of entirely missing the point as much as people who talk endlessly of EGG resutls and FMRI images and genetic mutations.
i understand that social constructivists dont mean to say that anything is unreal, because to them categories that are socially constructed can be *more* real than biological categories because we’re ‘social creatures’. I understand that. but what they say isn’t just heard by people who’re well verse in social constructivist literature. I feel like theorist tend to shrug responsibility for what they’re actually saying.
i do think there’s merit in looking at where we put the boundaries. But id like to point that that the National Scoliosis Foundation says ‘It’s important to realize that almost everybody has a little bit of irregular curvature’, but theres not a lot of researchers going to jump on how scoliosis is socially constructed. I’m also reminded of what Jan Nederveen Pieterse said about hybridity, that it’s boring everyday and mundane, and our reactions to certain hyrbidities has more to tell us about boundaries than it does about hybridaties.
the problem with social constructivism and their real going after identity that has been happening for me is that named identities arent really used by people who’re in a good position social structure. this is the same issue i have with judith butler and her idea that gender is compeltely socially constructed, where it is or it isnt I’m only moderately interested in, what does alarm me is from what ive seen its been used more often to tell trans people that their gender doesn’t mean anything more than its been use to tell cis men that their gender doesnt mean anything.
i hope you see my point here? what will be gained from thinking of autism as a social construction? (and if were at that, which autisms which parts of autism? All of it? Or just the BAP people? When do we stop and say yes, we’re reached autism sans social construction? Never?) And how might it be used to make life much harder for people who’re already in a marginalised position?
Also there are ways to not situated the problem within the person, to place it within society, without saying society made it up completely. That’s what the social model of disability is all about.
i know my thoughts arent the best put together but it really hurts me that ive been waiting all of this time for a reply to my comments and i dont think you are going to give one. this all makes me very uncomfortable with you people studying us like were some facisnating research project instead of people, even when you say you are seeing that we’re people, it makes me very worried. because ultimately in a world where autistic people are viewed how we are what you non-autistic researchrs say about autism will carry far more weight than what aytistic people say about autism. even if we get to have the same qualfications are you. because are autism apparently limits us so much we cant tell what our autism is.
i understand youre probably busy and my arguement probaly seems like a stupid one and an intellecual person like yourself has better things to do than assuring some crazy person on the internet that you researchers dont mean us ill. but im not convinced that you don’t mean us ill, or that you wont do us ill if only accidently.
and like also the other parts – sensory, routine, language – DO affect social. they ARE part of the social world. because EVERYTHING IS. in the same way that my partially sighted friend having a guide dog affects her soicializing, but being partially sighted isnt a social disorder. all of you and all that you bring with you to a social context affects socialising. so i dont see why they couldn’t explore the other aspects of autism. but on autism we can only talk about social failure. i dont feel like all there is to autism is social failure. all of my friends ar e autistic and i dont know if any of them would think of it tht way either. it seems to be a very neurotypical way to think of autism.
Hi, thanks for this comment. I do apologise for not replying to your previous comment – I told myself I would reply when I have more time and I must have forgotten. I should have been more considerate and I’m sorry. I am away from home for the next couple of weeks, but I promise I’ll reply at length as soon as I’m back. All best, Ben
Ok Qwell so I’ve been giving some thought to what you said in your comment above. I think the issue you were taking with social theories on autism – and do correct me if I understood you wrongly – is that social constructivist theory is basically just not very helpful or useful. And that it tends to preserve a certain hegemony. And promote a flat and unsophisticated view of autism.
Now that’s a really interesting claim, and I’m not going to try and argue with it. Mostly, because I think you might be right. I wonder if you ever read Ian Hacking’s book, ‘The Social Construction of What?’ He’s basically taking issue with social constructivism, much like you are. And he’s saying that the concept of social construction is thrown around so often that it almost lost all meaning by now. So he tries to put the mess into some kind of order, distinguishing some types of constructivism from others, and showing some to be quite useful, while others to be completely useless.
Hacking says that some claims that could be framed as ‘social constructivist’ have a political purpose. In claiming that some categories are ‘man-made’, and not ‘natural’, it destablises them, allowing the potential for change. Along the lines of ‘well if society made this category, it could also make it differently, or un-make it altogether’.
But anyway, I digress. My point is that saying that autism is a social construction is not a very sophisticated claim. But it does sometimes allow one to make other claims that are themselves potentially useful. Like Fein was doing in the article I was writing about. It opens up a space for discussion and for new ideas to emerge. Not always good ideas, of course. But sometimes they’re original ideas that might lead to more understanding than we had before.
So maybe a good way for us to view social constructivism in the context of autism is this: not as the answer to the question ‘what is autism’ (because we both agree it would ve a very poor answer). But as a basis for more questions: why was it framed this way and not another? Why is there usually more emphasis on social than on sensorial aspects of autism? Why are self-advocates and doctors so often in disagreement? (i.e. why do different groups construct autism differently?). In short, saying that autism is socially constructed opens up the possibility of looking at the political dynamics around the label. Which I think is a good think.
Is it also potentially damaging? Absolutely, as you very observantly remarked. Should we social scientists own up to this potential for harm that we might be unleashing? Absolutely. But the solution shouldn’t be, I think, to forego constructivism entirely. It would be to always make sure we present a sufficiently sophisticated and nuanced version of it.
The page has gone blank any ideas as to why?
Sorry – do you mean you can’t see the post?
I see that this is an old feed, but I find your discussion with Quell about the Fein article so interesting and illuminating in reference to the divergent ideas and opinions between NTs and autistics about autism.
The broader question on autism seems to be, is it a medical condition or a social construct, a philosophical outlook or a psychological malfunction, a genetic defect or part of our evolutionary checks and balances? Looking at it in terms of social constructivism is certainly interesting and should absolutely be explored, but it does a great injustice to autistics to look at it only in those terms.
I think that the idea of being more or less autistic over time infuriates autistics because the perspective is so obviously neurotypical, being based on outside, observable traits. More or less autistic to whom? The deficits and defects of autistics are so often couched in the terms of what what aspects of autism are most unsettling, disturbing, and uncomfortable to neurotypicals. In that way, the research is failing us and the need for more autistic researchers is most apparent.
I would argue that even if we seem to exhibit “more or less” autism over time, internally the struggle does not change. Mara’s story exemplifies this so well. I am not religious, but I do understand her view on how she would be accepted into heaven. It is so telling that she did not dream of a heaven in which she meditates in peaceful isolation or pets her favorite dog and listens to her favorite song on repeat for eternity, don’t you think?
It seems that we have a fundamental understanding of ourselves as Others, that we can not conceptualize a society, even with the multitude of them on this planet, even in Mara’s case with the limitless possibilities of heaven, in which we feel comfortable and accepted. This seems to point to an extra-social nature of autism, something outside of what any social constructivist theory could perceive.
For example, from a personal perspective, I did not suddenly develop autism in my thirties; rather, my coping mechanisms broke down, and I started looking for answers for something that was clearly different about me, and always had been. When I started learning about the diagnosis and reading other’s experiences, they tracked with my own. I had always fit in the group, but did not know it.
I stim, have a hard time talking to people, had language difficulties as a child, repeat words or phrases, crumble when faced with unstructured time and infinite options. I have ADHD, anxiety, depression, photophobia, sensitive hearing, distaste of certain textures and strong smells, and the list goes on. None of these things expressly excludes me from being an accepted member of a social group, and I have learned to ignore or suppress most of the visible affects that make others uncomfortable.
I would also argue that parents who claim their children are no longer autistic simply have children who have learned to exhibit the norms and behaviors that others find acceptable. To some extent, our sociability is trained, and some people have an easier time learning the ropes than others. Similarly, some autistics can learn them better than others. But for that autistic child, whether you know it or not, it is hard work to be what is expected of him or her.
Rein may be right that the way society treats autistics may exacerbate autism. However, I would not be onboard with he idea that society can create autism. Certainly, the burden of easing social tension should not fall only on the shoulders of the autistic, and we need more education on how neurotypicals can make socialization more natural and relaxing for autistics.
Great discussion, guys.