Language, culture and autism

Mike Danatos left this interesting comment on one of my pages. I decided to blog it because it deserves a wider circulation.

I am currently a Grad Student in an ABA program at Rutgers University. I am interested in pursuing doctoral research on autism. My review of the current understanding of autism depicts a clearly Anglo-centric view derived from research and interventions that have historically been based in either the United States or Western Europe.

Two of the DSM-IV criteria (social, language) are likely to evidence significant variability in the non-Anglo world. Uta Frith reports in her research that it is not surprising that children with autism “confuse deictic terms and even personal pronouns.” Does this observation apply only to children whose ‘natural’ language is English? Does the confusion change with an arguably more complex language such as Portuguese?

A genetic study of autism in Costa Rica reported that one of the major hurdles to overcome was that the standard research instruments (ADI-R, and ADOS) were only available in English and were unlikely to be translated by the intellectual property owners because of a perceived lack of market to repay their investment. A similar problem exists for IQ tests where no norms exist for Latin American countries.

An unprecedented amount of money has been spent in the last decade on Anglo-centric autism research including more than $100 million in 2006. A new study to understand autism in the non-Anglo world has recently begun yet the research is limited to countries on the Asian continent. There is currently a dearth of research on autism from a Latin American perspective and this is a huge gap in knowledge.

The importance of this gap can be brought into clearer focus by consideration of the tens of billions of dollars that are spent in the US annually on ‘special education’, the increasing proportion of students from Hispanic origins in the public school system and the unfortunate prevalence of significant misdiagnosis of special education needs of minority students.

I would be very interested in hearing thoughts, opinions, diatribes, etc on this issue.

So would I.  Is there any research into how different mother tongues might affect the presentation of the language difficulties in autism? As an example, I do not know if such a language exists, but you could not have pronoun reversal in a language that had no personal pronouns.Social and cultural aspects of autism including, but not restricted to language differences, are potentially as important as the genetic and medical aspects that get most of the attention. Roy Grinker, in his new book, Unstrange Minds, looks at autism as a world wide phenomena and includes an extensive section on Korea, where Reactive Affective Disorder, which is essentially blamed on bad parenting, is actually preferred as a diagnosis over autism. An interview with the Guardian reported that,

In such a setting, reactive attachment disorder is a popular diagnosis, Grinker believes, because the condition simply blames the mother: That’s the more culturally appropriate diagnosis, you see, because it means there’s just this one person – the mother – who’s to blame.”

The alternative, to admit to a genetic element, would bring shame on all the family. This may be a factor affecting the perception of autism in other communities were family traditions are strong and women traditionally have a subordinate role. This excerpt from Roy Grinker’s website shows how serious the problem is. And also how things are changing for he better.

Milal School. This is a wonderful school for children with autism called Milal School in an area of Seoul called Ilwon-dong. For me, it is a symbol of how things are changing for the better in Korea. When it was being built in the mid-1990s, some of the wealthy residents of this quiet neighborhood south of the Kangnam River in Seoul picketed the site, cut the school’s phone lines, physically assaulted school administrators, and filed a lawsuit to halt construction, because they believed that the presence in the neighborhood of children with disabilities would lower property values. The school opened in 1997, but only with a compromise. It was required to alter its architecture so that the children were completely hidden from public view. Some of the protestors were brutally honest. They said they didn’t want their children to see or meet a child with autism. Today, the Milal school is a jewel in the Ilwon-dong neighborhood where hundreds of neighbors volunteer. The architect was given an award for the building. And the gym is used for community events, such as concerts and church services. In the afternoon, when school lets out, families come by to pick up their children and sometimes take a leisurely walk in the neighborhood, for all to see. 

Cultural differences may be a factor in other aspects of autism research. When I attended the NAS International Conference in London two years ago a delegate from South Africa pointed out that nearly all of the genetic research was based on North American and European data with virtually no input from the southern hemisphere.

More recently, supporters of the link between vaccines and autism have tried to cast doubts on the validity of research by Eric Fombonne that demonstrated no connection between MMR and autism. They did this because he combined data on autism from anglophone districts of Canada with data on vaccines from francophone districts. There is a full discussion of the critique of Fombonne’s study at Interverbal; Reviews of Autism Statements and Research.

While it is extremely unlikely that language differences affect reactions to the MMR vaccine could cultural differences impact upon the diagnosis levels in francophone and anglophone parts of Canada? This is not an idle question. Autisme Europe won a case against France before the European Commitee of Social Rights in Strasbourg, in part because the cultural dominance of psychodynamic theory in France was instrumental in denying French autistic children an appropriate education. Could such a bias affect francophone communities around the world? It is worth noting that Fombonne is a French psychiatrist who does not adhere to psychodynamic theories of autism.

So, thank you, Michael Danatos. Your question raises all sorts of interesting possibilities.

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13 thoughts on “Language, culture and autism

  1. I talked to Roy Grinker briefly recently at a book signing. His research in Korea continues.

    I left with the impression that not only did he have the ADI-R and ADOS translated into Korean, the tests were modified for cultural differences, and both the parents as well as the children’s teachers were interviewed for his study.

    So at least for that population we should have some halfway decent data on prevalence.

  2. My initial response is:
    Mike Danatos – come on down! The perspective evidenced by the very nature of this question is a clear indication that you have an affinity for this field of study and action. I strongly encourage you to not only consider doctoral research on autism, but to do it!

  3. A study to be presented at IMFAR on “Autism in China” notes that

    Some items from the SCQ and ADI-R were difficult to translate into Chinese or make culturally appropriate. For example, there is no difference between “he” and “she” in Chinese and some gestures (e.g. pointing) are considered culturally inappropriate and are suppressed. A lack of gestures, “being quiet and alone”, and preoccupation are considered socially desirable behaviors for young children. The One-Child policy also makes it more challenging for parents to compare behaviors of their child with same age typically developing children.

    (I posted on this study at Autism Vox.)

  4. Yes, there are many languages that do not use personal pronouns as much as English (although I don’t know if there are any languages that do not use them at all).

    For example, in Spanish and other Romance languages, articles instead of possessive pronouns are used when speaking of body parts: a child would be taught to say “the hand,” rather than “my hand.”

    I agree with Steve D — this would be an excellent topic for doctoral research!

  5. Also, in European languages there are two forms of “you” — a familiar form that is used with one’s social equals and inferiors, and a more formal pronoun that is used when addressing one’s elders, social superiors, and customers.

    Autistic kids often get in trouble because they get confused and use the familiar pronoun when speaking to teachers and other adults.

    I once knew an autistic guy in the US, a native English speaker, who had trouble with his high school French class because he couldn’t remember to use “vous” rather than “tu” when addressing the teacher.

  6. Indeed, ABFH.

    Moreover… there are two forms of reference in first person in most European languages. Examples: I/Me (English), Jag/Mig (Swedish), and so on. Finnish has one form for first person singular: Minä. The second person singular has the two forms: Sinä/Te.

    I wonder what the influence of language is on the experience of beinga Finnish autistic in Finland.

  7. David — if I recall correctly, wasn’t your ex-wife doing some research a few years ago on pronoun confusion among autistics?

    Did she do any comparative analysis across different languages?

  8. Very interesting topics, indeed

    Living in Portugal with an autistic son, it amazes me “how easy” the english language seems to be for some of our kids, in comparison to our mother tongue. I’ve heard a few examples of children answering in english to simple portuguese questions (even though they were never thought a second language)

    I guess it has something to do with DVD films, PC games, internet and so on. The english seems to reach them “naturally” through those channels, much better than we do with social interaction

  9. Just wandered to this post through link-hopping… I thought I’d suggest that you might try getting in touch with the Autistic adults in the community that have spent their lives in other countries. There are actually a lot of them on LiveJournal, and most are members of the “Asperger” community; you might ask there (though get moderator permission first).

  10. Er, and no idea what happened to my name in the previous comment… I’m Moggymania, there’s an “a” at the end of it.

    (If you do choose to get in touch with the Asperger moderators, you could mention that I suggested you ask — I’m a mod there, just have been on vacation lately.)

  11. Thank you all for your interest and suggestions. I would very much like to pursue this inquiry as a doctoral study but am having some difficulty finding the right ‘university match’. Typically post-grad programs in this area fall either into Psychology (Autism, and interventions) or Education (everything from Pedagogy to Ed Psych to ‘Special Education’). My interest is broader than the Psychology perspective where the ‘autism expertise’ lives, yet too specific for the Education School which has no autism experts.

    But I have not given up. I’ve researched universities from Boston to Washington DC and am still hopeful that I might find an advisor and committee in an appropriate program that would be a fit (University of Connecticut and University of Maryland, College Park are two possibilities).

    I would love to attend the International Autism Research meeting in May but am not able to get there on my good looks alone :-) perhaps another year.

    I will follow up on the suggestions made here and welcome any additional thoughts, ideas, direction.

    Once again, thanks for your help.

  12. As always, great finds and comments on your blog!

    I recently emailed a behavioral colleague that relational frame theory may yield incredibly important information about how autism/MR results in difficulty forming relational frames and how these impact language and cognition. It’s certainly worth exploring: something I may look into when I begin my doctoral studies.

  13. Hi
    Its really interesting article. I have been doing research on autism pronominal reversal from India. I am concerned with Telugu language and pronominal reversal. I did find more or less the pronominal reversal the same in English and Telugu.

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