4.2 Diagnosing autism in different cultures

In many developing countries, access to diagnosis is extremely limited, which contributes to strikingly lower prevalence estimates (Elsabbagh et al., 2012). There is also evidence for variations in diagnosis rates between different ethnic communities within a given country (Begeer et al., 2009).

Most diagnostic criteria and tools have been developed in the UK and US and reflect the majority Western understanding of what is typical behaviour and what constitutes significant difference. Beyond the challenge of making diagnosis available wherever it is needed, there is the issue of what diagnostic criteria and instruments are appropriate to use; cultural norms for behaviour must be considered (Norbury and Sparks, 2013).

Activity 6 What factors affect varying prevalence estimates across cultures?

Timing: Allow about 10 minutes

In these clips, Dr Prithvi Perepa, of Northampton University, draws on his own research to consider the implications of cross-cultural factors for diagnosis of autism. As you watch the clips, note the main factors he mentions.

Clips 1 and 2

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PRITHVI:

The number of people diagnosed with autism vary across the world for two reasons, partly as I think the access to services and understanding of autism, which is varied in different parts of the world. But personally, I also feel there's a difference because of how autism is actually understood or defined by different groups. Because autism does not have a medical diagnosis as such-- it's based on behaviour and how we understand behaviours-- what can be considered as a difficulty or a difference would vary, especially when we are looking at kind of social behaviours and social norms.

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PRITHVI:

A piece of research, for example, I did in Oman recently-- statistics in Oman is 1 in 10,000 is on the autistic spectrum. And in the UK, as we know, the latest studies are-- we are seeing 1 in 90. So it's real different. So it might not just be access to services. But it's also how we actually understand autism as a disability.

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Discussion

Prithvi acknowledges that limited access to diagnostic services will have an impact on prevalence estimates: fewer diagnosed cases means lower prevalence. However, he also stresses that culturally different understandings of autism, may affect whether particular behavioural traits are seen as atypical or not.

Clip 3

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PRITHVI

For diagnosing autism, we are looking at behaviours that are exhibited or not exhibited by individuals on the autistic spectrum. And the value that different cultural groups put on the same behaviour could be varied. So for example, in some of my research I was coming across some cultural groups where they don't necessarily teach children to play in an imaginative way. So the play is a very functional kind of based kind of a play.

Now if a child like that comes to a professional in the west, who might be seeing from the prism of autism, that would immediately ring alarm bells. Because you start thinking this child is not showing imaginative play skills, one of the core difficulties with autism. And therefore, this person could be on the autistic spectrum.

Or there might be issues around things like the use of language, for example. Again, some African cultures, it's inappropriate to use personal pronouns. So those cultures, they actually encourage children to use their own name. So rather than me saying I think, it might be saying Prithvi thinks he would like a drink.

Now again, that would be considered as one of the classic features of autism, which again, a professional could think that might be the reason why this child is doing. So how different cultures communicate and interact are different, which can raise alarm bells from professionals but also may not raise any alarm bells for parents. Because coming from an Indian background, for example, there's this general idea in Indian families that boys develop speech later. So if a child is not developing speech and happens to be a male, probably parents from India wouldn't be concerned, even if they are three or four-- as I know from some personal cases-- whereas there might be a genuine speech issue or even autism, for example. But they are not seeking support.

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Discussion

Culturally different expectations may be particularly marked concerning children’s early developmental milestones. For example, whereas imaginative pretend play is considered an important milestone in the West, some cultures prefer their children’s play to be ‘functional’ e.g. the ability to stack toy bricks would be considered more important than using them as ‘cups’ for pretending to drink. In certain African cultures, children are not expected to refer to themselves with personal pronouns such as ‘I’, and in India, boys are not expected to develop speech early. Such differences are likely to affect whether and when a parent forms concerns about their child’s development.

Clip 4

Besides differences in cultural expectations for developmental milestones, there may be differences concerning acceptable social behaviour. Such cultural differences may exist in UK-based ethnic minorities, as well as across different world cultures, as Dr Perepa explains.

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PRITHVI:

A lot of work my work has been around Asian and African communities in the UK, I suppose. And eye contact has been a big issue. Because as probably people from those backgrounds understand, giving eye contact to an adult or to somebody in authority is considered as extremely rude in those cultures. So children are actively taught not to give eye contact, because giving eye contact is almost challenging somebody. So you are supposed to look down or avoid eye contact.

And again, because even diagnostic tools aimed at children as young as 18 months or three years focus so much on lack of eye contact as one of the initial features of autism, professionals could think the child is not giving eye contact, does that mean that they are on the autistic spectrum? So I think some of these features are based on what are the norms for western children and perhaps are not always as transferable for children or young people coming from different parts of the world.

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Discussion

Besides different expectations for development, acceptable social behaviour may differ. For instance, in some countries, it is considered disrespectful for a child to engage in eye contact with an adult. So lack of eye contact would not give a parent cause for concern. Such cultural differences may exist in UK-based ethnic minorities, as well as across different world cultures