Friday, December 31, 2010

What You Call People Matters

France's Minister for Europe, Pierre Lellouche, recently accused the UK’s Conservative Prime Minister, David Cameron of castrating Britain's position in Europe, adding that his approach was "pathetic.”  His use of the word "autism" has caused the most offense in Britain.  In his own words, he said:

Ttriste de voir la Grande-Bretagne, si importante en Europe, se couper du reste de l'UE et disparaître des écrans radar.  Ils n'ont qu'une formule et ne font que la répéter. C'est une forme très bizarre d'autisme

Which my Google Translator, while perhaps not the best, says in English the Minister's comment means:

“Sad to see Great Britain, so important in Europe, cut from the rest of the EU and disappear from radar.  They have a formula and do that again. It's a very weird form of autism.”   

Many in the UK’s Autistic Society are up in arms about the French minister’s use of the word “autism,” perhaps more than with his characterization of Mr.Cameron as repeating the same mistakes as past conservative governments.

One of the consequences of autism’s becoming better known is that the word begins to find its way pejoratively into popular parlance, much as was the word “mental” when my kids were growing up. If a youngster in school wanted to insult another student, he called him “mental.” 

When I was a child, one of the neighbor kids who road the same school bus as me, was something of a trouble maker, taunted me by calling me “four eyes,” which was a pejorative term for anyone who wore glasses.  At first I had no idea what he meant, but once it was explained to me that it was an insult based on the assumption that any child who wore glasses was a goody-two-shoes teacher’s pet, the remark made me upset and led to tussles on the school bus.

Many people, including professionals joke among themselves about being excessively concerned with detail and rigid in their daily routines, by assigning the word “OCD” (obsessive compulsive disorder) to themselves and coworkers. This has, in part, grown out of the popular Monk television series of a detective with Obsessive Compulsive Disorder.  It is one thing to use a word when referring to one’s own personal traits, but using any diagnostic term pejoratively (e.g. “She’s spastic”) is bad idea and should be discouraged.  When you consider that around 1 in 150 to 300 children have autism, there is a good chance that someone who hears your comment about someone being "autistic" will take offense at such remark. To them, having autism isn’t a joking matter.

In one of his children's poems Carl Sandburg wrote: “Look out how you use proud words. When you let proud words go, it is not easy to call them back. They wear long boots, hard boots; they walk off proud; they can't hear you calling. Look out how you use proud words.”

Saturday, December 18, 2010

Happy Holidays, Lots of Holidays

Dec. 21st.  Winter solstice. In ancient Rome, the winter solstice was celebrated at the feast of Saturnalia, while in pre-christian Britain, the end of December centered around the pagan Yule log in a fiery display to melt the heart of a cold and dreary winter. Midwinter Festival in the Druid tradition is called Alban Arthan, Welsh/Brythonic for 'the light of the bear'.
Dec. 22nd  Soyal or Soyala.  Hopi Native American winter solstice Prayer Offering Ceremony for good health and prosperity in the New Year
Dec. 23rd. Festivus.  A secular holiday created by a writer for the Seinfeld TV show, a holiday “for the rest of us” who don’t celebrate one of the other end of the year holidays.  It is celebrated with an aluminum “Festivus Pole” (instead of a decorated pine tree) and “Airing of Grievances.”
Dec. 25th. Christmas. The day most Christians celebrate the birth of Christ, the holiest day of the Christian year. In the Netherlands, Sinterklaas (Santa Claus) comes on Dec. 5th by steam boat from Portugal (really!) and is accompanied by a helper, Swartz Piet (Black Piet) who puts candy in the shoes of good boys and girls, and according to older Dutch tradition, bad children had straw or coal put in their shoes, and if they were really bad, they were taken back to Portugal by steam boat. (I'm not kidding, that is the tradition in the Netherlands).
Dec. 26th  Boxing Day is celebrated the day after Christmas Day in the United Kingdom and other Commonwealth countries. It was traditionally a day to give a box with a gift to those who have worked hard for you throughout the year. Many churches or businesses placed boxes for coins to be placed for year end gifts. Some countries now have Boxing Week to sell excess Christmas inventory at reduced prices.
Dec. 26th Kwanza begins for one week. Kwanzaa was created to introduce and reinforce seven basic values of African culture that contribute to building and reinforcing family, community and culture among African American people as well as Africans throughout the world African community. These values are called the Nguzo Saba which in Swahili means the Seven Principles. Developed by Dr. Karenga, the Nguzo Saba stand at the heart of the origin and meaning of Kwanzaa, for it is these values which are not only the building blocks for community but also serve to reinforce and enhance them.
Jan. 1st.  New Year’s Day celebrated in countries that follow the Gregorian calendar, but in those that follow the Julian calendar (e.g. Eastern Orthodox) New Year is celebrated on Jan 14th on the Gregorian calendar. 
Have a happy holiday season and best wishes for a healthy New Year!

Saturday, December 11, 2010

Autism Genetics: Eschew Nihilism

A recent article in Brain Research by C. Betancur, a distinguished French geneticist, points out that many genes have been associated with autism in some individuals.  The title of the article says it all, “Etiological heterogeneity in autism spectrum disorders: More than 100 genetic and genomic disorders and still counting.”   Such an assertion is dispiriting, and smacks of nihilism to non-specialists who have been hoping geneticists would come up with one or a few genes that could be targeted for treatment and ultimately, prevention of some or most forms of autism.
The article’s title is, perhaps inadvertently, misleading. Dr. Betancur may be right, that in some cases it will be necessary to identify specific medication treatments that only work with a single gene defect that may only account for a fraction of autism cases, but that is not the only option. The article might be taken to imply that because different genes are involved means there are few common pathways by which most of those genes produce their results.  That is likely false.  It is far more likely that multiple genes can produce similar physiological, chemical and behavioral outcomes by slightly different mechanisms.
Case in point.  Approximately three years ago a group of scientists and clinicians at Harvard University headed by Christopher Walsh, Eric Morrow and colleagues, and several sites in the Middle East identified autism within families where the two parents shared a common ancestor, such as a great grandfather.  That greatly increases the risk of genetic disorders. By studying those autism related genes they found several, some located on different chromosomes, but they all contributed to the same process, the formation of new brain connections during learning, called synaptogenesis.  Synapse formation occurs in two steps that involve specialized cell adhesion molecules. This implies that it may be possible to overcome physiological and behavioral outcomes in more than one way.  For example, we know that intensive early behavioral treatment markedly reduces or reverses symptoms of autism in over half of treated children. The experience provided must be able to reduce the defect in synapse formation.  But perhaps there are other ways, for example, treating with medications that promote synapse formation during certain developmental periods.  Or perhaps the two approaches can be combined, as is being done by Dr. Diane Chugani at Wayne State University.
The long and short of it is, don’t despair. The “100 and still counting” in the title is designed to promote funding for genetics research, not help families understand the cause of their child’s autism spectrum disorder. 

Betancur C. Brain Res. 2010 Nov 30. [Epub ahead of print]
Morrow, EM et. al. Science 11 July 2008:
Vol. 321. no. 5886, pp. 218 - 223

Friday, December 3, 2010

Hannukah & Autism

This week Jewish families celebrate Hannukah, the Festival of Lights. This eight-day holiday commemorates the rededication of the Holy Temple in Jerusalem at the time of the Maccabean of the 2nd century BCE.  This year Hannukah is celebrated from December 1st to 9th.   Kids on the autism spectrum usually want to help lighting the Menorah candles, so be prepared!
Jewish children look forward to spinning the Dreidel, the four-sided top with Hebrew characters printed on it, and receiving Hannukah gelt, usually gold foil covered chocolates or small gifts.  The Dreidel can be a bit of a problem for some kids on the spectrum who get hung up on spinning objects, so be prepared for Plan B, some alternative to the dreidel. The dreidel song goes, I have a little dreidel, I made it out of clay, And when it's dry and ready, Then dreidel I shall play! Too begin the dreidel game, each player should have about 20 raisins, nuts or small candy bits. Each person puts one piece of candy in the middle of the table. Then each person takes a turn at spinning the dreidel.  If the dreidel stops on the Hebrew letter Nun, the player collects nothing from the pot, Gimmel, the player gets it all, Hey, The player collects half of the pot , or Shin - The player sets one of his own items into the pot. When only one piece of candy or raisin or nut is left in the middle each player adds another piece of candy. When a player has all the candy, that person wins! Kids with autism often have difficulty not winning when the dredel stops, so you may want to modify the rules.
Though it’s a bit late for this year, families might enjoy logging onto the Skreened website run by Aspergirl, through which screened T-Shirts with apt images and slogans abound.  I’ve embedded a couple of examples I especially liked.