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.
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.