Wednesday 23 May 2012

Worldwide autism

Autism spectrum conditions within a global context has been a topic of some interest in recent days as per papers like this one and posts like this one. Without trying to jump on the bandwagon, I offer this post on autism worldwide for your interest. I will warn you that there are some quite sensitive issues described in this post and no offence is intended.

In the post 'Is autism the same all over the world?' I attempted to discuss a few issues around autism within a more global context. No specific conclusions were reached in that post given a bit of a gap in the research literature when it came to autism outside of Europe and the USA; aside that is, from the fact that autism is a global phenomenon. Since then, quite a few papers have emerged discussing various aspects of autism in other countries. Some of these papers had some interesting content which got me thinking.

This paper by Sayyed Ali Samadi and Roy McConkey* (full-text) is, by my reckoning, quite a good read when looking at a model of autism in the developing world. The authors focused on Iran as a template for autism in other developing countries in terms of (i) prevalence, (ii) understanding of the condition and (iii) the application of resources where money is not exactly flowing, or at least not to the standards seen in other countries even with the current economic downturn in mind.

Without wishing to regurgitate the entire paper contents, a few details were striking:

  • Prevalence data on autism is limited in developing countries. I could probably think of quite a few reasons as to why this might be so, but the more obvious ones are things like money, resources and accessibility. Add to that certain cultural nuances as per those described in the SK study and the fact that most of the instruments currently used for screening and assessing autism are in English (with population norms to match), and the waters start to become a little clearer as to why prevalence data might be so limited.
  • Related to the issue of cultural 'norms' are the various effects of knowledge and understanding about autism. The fact that 12% of the parents interviewed in a different study completed by some of the authors (here) believed that their child's autism was as a result of ".. God’s test and probable sins that they might have done unconsciously" is noteworthy. Appreciating that such views might seem a little out of place to some people, I don't want to belittle what has been said or try and put a 'Western slant' on to it because of the need to respect individual beliefs. I'm sure also that most parents of a child with autism, and lots of other conditions, might have at one time or other questioned the how and why, including some spiritual aspect also. What this does perhaps illustrate is how culture and beliefs - whether individual or societal, fluid or stable - can influence perceptions of conditions like autism. 
  • The relatively small contribution of genetics to autism aetiology cited by parents included in the same study (7%) compared with environmental factors (23%) is also striking bearing in mind recent history in that region. This contrasts with other research conducted with European and North American parents where brain and genes seem to be more commonly regarded as 'causative' factors.
  • Parental stress associated with raising a child with autism receives mention as it has done in previous research. Not to dwell too much on the spiritual aspect, the authors discuss how coping strategies might to some degree be derived from Faith and to quote: "Taking care of children is an order from Allah to all Muslim parents". I found this study by Ekas and colleagues** which offered some insight into how religion and spirituality may influence coping patterns and styles used by parents of children with autism. The caveat being that parents seem to derive coping strength from lots of different sources at different stages of their, and their child's, development including, I assume, what provisions society makes available to help families, whether this be by religious or social means.

A second paper also well worth a look is this one by Bakare and colleagues*** (full-text). This paper is more of an analytical type as per its aim to look at potential variations in language acquisition and age at presentation in cases of autism in Africa. The authors report some interesting findings based on their meta-analysis but perhaps the more relevant material to this post comes from their discussions of knowledge and awareness of autism in Africa.

Such that:

  • What the authors describe as 'preternatural and supernatural aetiological explanations' for autism were notable in some reports. I assume that this coincides with culture and superstitions which even today still contribute to modern life in some areas of the World. 
  • Whether because of superstition or because of a lack of awareness and training on autism, general knowledge about autism seemed to be quite sparse. This has obvious repercussions for screening, diagnosis and the possibility of early intervention for cases of autism.

Cumulatively, these and other papers provide some thought-provoking insights into autism in parts of the world not necessarily thought about as much as they should be. I do think there is a balance to be struck when talking about autism in developing nations. On the one hand, there is a need to ensure that people with autism, wherever they are, have access to the necessary and appropriate services and opportunities to enable their potential to be reached including suitable support for families. On the other hand is a respect for cultural and personal values, such that systems and values more commonly associated with the so-called developed countries are not forced upon others who might have a slightly different perspective.

Autism has been the focus of this post, but I assume that lots of different conditions could be transposed on to these findings with similar cultural differences reported. Just in case however that you thought things were 'all developed and rosy' in our part of the world with regards to autism, bear in mind that there is still some distance to go even right on our own doorstep.

* Samadi SA. & McConkey R. Autism in developing countries: lessons from Iran. Autism Research & Treatment. 2011
DOI: 10.1155/2011/145359

** Ekas NV. et al. Religiosity, spirituality, and socioemotional functioning in mothers of children with autism spectrum disorder. JADD 2009; 39: 706-719

*** Bakare MO. et al. Excess of non-verbal cases of autism spectrum disorders presenting to orthodox clinical practice in Africa – a trend possibly resulting from late diagnosis and intervention. The South African Journal of Psychiatry. 2011; 17: 118-120

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