Researchers track down autism rates across the globe

8 Apr

The Simons Foundation blog, SFARI, has always had a good quality of articles. Lately it appears to me that the frequency of articles has increased. One recent article hits a subject that has been a focus of mine for some time: prevalence estimates and how they vary by culture and geography. In Researchers track down autism rates across the globe Virginia Hughes talks to a number of researchers working on expanding autism prevalence studies to more countries. Outside of the US and the UK, autism prevalence studies are somewhat rare. Until fairly recently, prevalence estimates outside of the US and Europe were basically nonexistent.

Ms. Hughes starts with this introduction:

In urban areas of South Korea, some families of children with developmental delays will go to great lengths to avoid a diagnosis of chapae, or autism. They think of it as a genetic mark of shame on the entire family, and a major obstacle to all of their children’s chances of finding suitable spouses.

The stigma is so intense that many Korean clinicians intentionally misdiagnose these children with aechak changae, or reactive detachment disorder — social withdrawal that is caused by extreme parental abuse or neglect.

This won’t come as a surprise for those who have read Roy Richard Grinker’s Unstrange Minds, where Prof. Grinker explores how autism is viewed in various parts of the world, including South Korea.

Prof. Grinker is interviewed, as is his collaborator Dr. Young Shin Kim, and Dr. Eric Fombonne.

Autism prevelance work has been performed or is ongoing in Mexico, South Korea, Brazil, India, South Africa and Oman. Since autism isn’t diagnosed through a biological test, variations in culture can have a significant impact on the test methods.

Ms. Hughes notes:

Language and culture may also affect the way this research is carried out. For instance, the Korean language uses an extensive array of suffixes that denote the relationship between the speaker and the subject. South Korean children with autism have trouble using these social markers, but the Western-based standard tests of autism, such as the Autism Diagnostic Observation Schedule (ADOS), don’t test for this.

Similarly, Grinker points out, healthy children from non-Western cultures may display a trait that ADOS counts as a symptom of autism. In South Korea, for example, making eye contact with an adult is not socially appropriate.

“This is why it’s pretty useful to have [anthropologists] who can translate diagnostic instruments that were designed in one culture and used in another,” Grinker says.

Rather than cut and paste the entire article I will point you back to SFARI for the full piece. It is well worth reading.

6 Responses to “Researchers track down autism rates across the globe”

  1. Neuroskeptic April 9, 2011 at 10:52 #

    Hey, I hadn’t seen that blog before – but it’s awesome. Thanks!

  2. daedalus2u April 9, 2011 at 14:05 #

    Mention of the possible role of language is fascinating.

    “Unlike in English, verbs such as ‘think’ and ‘believe’ have different forms in Chinese, depending on the speaker’s perception of the statement’s accuracy.”

    That would make it easier to develop a theory of mind, but maybe harder to question other people’s false beliefs.

  3. julia April 13, 2011 at 03:47 #

    This may lead to great data that contradicts the idea that vaccines and other modern trappings may cause autism. Of course it is fascinating to study other cultures besides one’s own in this regard. It is mind-expanding in contrast to the mind-shrinking ideas trapped in Western cultural garb of the anti-vaccine crowd. BTW science is neither Western, Eastern nor any other mind-set; it is an objective system limited only by our personal assumptions. This is partly why such data is important.

  4. McD April 13, 2011 at 08:32 #

    Before my son’s and then my own diagnosis, I assumed, and explained away when needed, my lack of eye contact as a cultural artefact. I knew eye contact made me very anxious/uncomfortable for some reason, and I was quite happy to accept a cultural explanation when one was proferred by an occupational psychologist (about when I was in my early 20s).

    In many polynesian cultures like the one I was raised in, one averted ones eyes when being respectful, particularly when listening. But eye contact was expected when one was talking, in order to be taken seriously, so I only had half an excuse (but other people didn’t know that).

    I never did work out when eye contact was appropriate and when it was just being strange. I just try to match the other person these days. But the cultural excuse was a good one – usually people (seniors/bosses) only too happy to show how cosmopolitan they were if I happened to mentioned that was one aspect I got confused on.

  5. julia April 13, 2011 at 08:43 #

    “…usually people (seniors/bosses) only too happy to show how cosmopolitan they were if I happened to mentioned that was one aspect I got confused on.”
    Lucky you. I told a school admin that it was a sign of respect in many cultures and was taken to task for that[when i was a child]. Psychologists trying to “counsel” me said i did not look people in the eye because i felt bad about myself or had low self esteem. Maybe that became a self-fulfilling prophesy with me for a while. Too bad.

  6. Chris April 13, 2011 at 09:28 #

    The eye contact bit is very interesting to me. I have never been diagnosed as autistic, and the first time someone mentioned it was for my son was when he was in his last year of high school (he would have been diagnosed under the criteria set in 1994, he entered the special education system a couple years before then).

    Except when I was between kindergarten and first grade I got an ear infection that went unnoticed (due to my military father flitting between two states, and a winter move to another state). During that time I only remember ringing in my ear, but I was slowly losing my hearing, while at the same time learning to read lips.

    Apparently my behavior of ignoring the teacher was noticed in the school in California after my father was sent to Vietnam. I remember a hearing test, and then being in the hospital in Ft. Ord, CA to deal with my tonsil and adenoids (the reason for the hearing loss). Apparently the removal of my tonsils and adenoids restored my hearing.

    But I still watch lips when people speak. Even in high school I was asked to look at eyes. Sorry, folks, it is an hard habit to break!

    (And I still get the occasional ringing in my ears!… one bit of hearing weirdness: apparently I am still deaf to certain frequencies … early in my marriage a fly was buzzing near a windowsill that drove hubby nuts, I did not hear it at all)

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