Nature has a fascinating article on the diagnosis of autism and how it clashes with cultures that have different forms of everyday social interaction and different standards for how children should behave.
In rural South Africa, young children may look at adults’ faces while having a conversation, but they don’t usually make direct eye contact because it is considered disrespectful. Yet a lack of eye contact is a hallmark of social deficits in people with autism, and as such it is something Western clinicians look for when diagnosing the disorder.
There are other examples of children’s behaviour – such as finger pointing to draw attention to something, or conversing with adults as if they are peers – that are commonplace in the West and included in tests of autism.
The ‘gold standard’ for diagnosing autism is a combination of the ADOS, a set of structured tasks to observe interaction with the person concerned, and the ADI, an interview with the caregiver to see how any difficulties have emerged over time.
As both were developed in London, they are based on Western / European model of social interaction. The risk is that other forms of cultural interaction can be wrongly interpreted as signs of impairment.
It’s worth saying that many cases of autism are unmistakeable as difficulties in social interaction can be quite marked.
However, as the concept of the autism spectrum has become more common, what can be variously and unsatisfactorily described as ‘high functioning’, ‘atypical’ or ‘mild’ autism, usually where difficulties are not immediately obvious, is where there is more room for cultural confusion.
The Nature article describes how various cultural tendencies eddy and flow around the concept of autism and how clinicians are now attempting to navigate the choppy waters of diagnosis.
Link to excellent Nature article on culture and autism.
3 thoughts on “A cultural understanding of autism”
Cultural norms for eye contact have been recognised as variable in education at least since the 80s when I did my teacher training – I would never expect eye contact from an Asian child when telling them off, for example, as I would be asking them to do something disrespectful.
It is recognised diagnostically by many clinicians that it is not lack of eye contact itself that is significant in autism, but atypical eye contact, unusual or inappropriate eye contact, and this would obviously take into account cultural norms, providing the clinician was aware of them.The criteria themselves do not state a “lack” as the significant factor, my son meets the criteria and has full diagnosis but his eye contact is over-intense.
ADOS and ADI are seriously out of date and need revising at the very least – they are also biased against the diagnosis of females because they focus on the overt male behaviours rather than the more subtle presentations. Time to look again at the way we test for ASCs.
Terrific article! I particularly appreciate your willingness to parse out different levels of autism. I agree that there is clearly a “real” disorder (or probably several “real” disorders) within what is now called the autism spectrum, but that there are also many people with the autism label in the North and West who would never be labeled in other parts of the world. Not only is the issue cultural in that eye contact, etc., is a matter of social norms, but it is also cultural in the sense of physical settings. The person who lives in a agricultural society which places great value on strength and physical ability is not judged for his ability to take tests, sit still, manage loud concerts, and so forth. In fact, those skills don’t even come up because they’re irrelevant!
To be just a little skeptical; food comes to mind as an example of how some basic commonality underlies a behavior or psychological attribute however much variation there may be. There may be a cultural component but at the core autism is a clinical reality.
It’s very tempting to become enthusiastic over little discrepancies.
If something like language has a biological core, whatever the variation in culture- so too autism.
The burden is upon you to build a plausible model capturing both culture and biology that goes beyond suggestive hints