Blogging about Thinking

Kev just nominated me for a Thinking Blogger award.

The official rules for participation in the Thinking Blogger Awards meme are as follows:

1. If, and only if, you get tagged, write a post with links to 5 blogs that make you think,
2. Link to this post so that people can easily find the exact origin of the meme,
3. Optional: Proudly display the ‘Thinking Blogger Award’ with a link to the post that you wrote.

thinking blog

Ilker Yoldas, the originator of this meme, also enjoins us to “Please, remember to tag blogs with real merits, i.e. relative content, and above all – blogs that really get you thinking!” Apart from feeling a buzz because Kev has nominated me in this category, I also feel obliged to choose carefully. This may be a bit of fun. But it is serious fun. It gives me an excuse to think about the themes that have informed this blog since its inception in November 2005.

  • Debunking autism quackery and exposing its exploitation of parents’ fears.
    • This is really about exposing bad science and Ben Goldacre’s weekly BadScience column in the Guardian, also published as a blog, does this and so much more. He has taken down the Geiers, Wakefield, and their media friends like Melanie Phillips. http://www.badscience.net/
  • Championing real parental concerns for their children because when these concerns are dismissed by mainstream practitioners it drives parents into the hands of the purveyors of autism quackery.
  • Educating the professionals about the reality of autism because up to date knowledge is making existing practise redundant.
    • Michelle Dawson is a remarkable autistic adult whose collaborations with Profesor Mottron in Canada and  Professor Gernsbacher in the USA have done a lot to forward this aim. http://autismcrisis.blogspot.com
  • Arguing for neurodiversity and autism acceptance because they can provide the basis for a positive intervention in the lives of of autistic people.
  • Recognizing that within science there are legitimate differences and disputes. We can be on different sides while exercising mutual respect.
    • I would recommend a website but I have already exhausted my quota. Maybe next weekend I will find time to blog about this question exclusively. It does seem to me to be of the utmost importance that, as the cultish believers in anti=science sink into obsurity, we successfully engage with the intellectually valid disputes within the life sciences in which we find giants like Pinker against Rose and, if he had not died before his time from cancer, Gould against Dawkins. Arguments about genetic determinism and autopoeisis go to the heart of the disputes within the autism community about the consequences of seeking a cure versus the potential benefits of respect for the condition of autism.

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.