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Shining a light on autism

1 April 2012
by Patrick Love

Emma the persuader. Her t-shirt says "Defeating autism: research's new challenge"

Today’s post was written with Anne-Lise Prigent, editor in charge of education publications at OECD Publishing.

The best (and worst) answer ever to the question “Why is the sky blue?” has to be “Because God’s a boy”. The answer to why the OECD is turning blue this evening is more straightforward: our colleague Debbie Bloch and her daughter Emma persuaded the Organisation to join in Light it up Blue night, where all kinds of buildings from public monuments to people’s homes will be lit with blue bulbs to mark the fifth UN World Autism Awareness Day. You can see some spectacular examples from last year here (and not just buildings, check out the Niagara Falls).

France has designated autism as this year’s Grande cause nationale, a distinction that raises the media and political profile of the cause chosen. Emma is one of millions of people worldwide on the autism spectrum, and mother and daughter will be taking an active part in the initiative. “I’m glad that France is finally doing something about autism,” says Emma, “helping people understand that we’re different, not crazy.”

Nobody knows the exact number of autism cases globally since many developing countries do not monitor the condition and prevalence can vary drastically in a short time even within a single country. The Centers for Disease Control for example found that prevalence in the US had increased by 57% to 1 in 110 eight year-olds in only four years (2002-2006), and data released on March 29th put the figure at 1 in 88. The CDC admits that the “reasons for the increase are not completely understood”, although better reporting and changes in diagnostic procedures would seem obvious factors. Sex plays a role, with significantly more boys than girls affected, but data on socioeconomic status and ethnicity are inconclusive.

Brain studies suggest that the disorder could occur when defects in genes that control brain growth and that regulate how brain cells communicate with each other disrupt normal brain development early in foetal development. The causes are not fully understood however, with genetics and the environment both playing a role (as in most disorders).

The likelihood of both children being affected is higher among identical twins than among non-identical ones, whereas this rate would be the same if genes weren’t involved. The 2011 California Autism Twins Study (CATS), the biggest ever research programme on twins with the condition, estimates less genetic influence than previous findings, but on the other hand it finds a far higher chance of two non-identical twins both developing the disorder than previous studies (35% versus 0% to 10%).

Dr Clara Lajonchere, vice-president of clinical programs at Autism Speaks argues that the CATS results may mean that twins share environmental risk factors that other siblings don’t, and there is some evidence that advanced parental age, maternal nutrition, maternal infections during pregnancy (especially flu), and premature and/or underweight birth play a part. There may be a time during the pregnancy when brain development is particularly vulnerable to environmental influences.

Apart from the challenges inherent to any scientific research of this type, another difficulty is that “autism” is used to designate a wide variety of conditions with different names, and it is hard to diagnose accurately. For example, the autistic savant Dustin Hoffman plays in the 1988 movie Rainman is based on Kim Peek. A 2008 study concluded that Peek probably had FG syndrome, a genetic condition that causes physical anomalies, not autism.

Specialists talk about “autism spectrum disorder” (ASD), and ASD is likely to be adopted in next year’s revision to the US Psychiatric Association’s influential Diagnostic and Statistical Manual of Mental Disorders 5 (DSM-5) to replace current diagnoses of autistic disorder, Asperger’s disorder, childhood disintegrative disorder, and Pervasive Developmental Disorder Not Otherwise Specified (PDD-NOS). Some groups, including the Autism Society, are worried that this will exclude people who need care from getting access to services.

The reason for adopting a single category is that although the causes and manifestations of the conditions vary widely, people with the disorders mentioned above show similar types of symptoms, including the ones most of us associate with autism, such as communication difficulties, lack of social skills and stereotyped or repetitive behaviours and interests. Many people who don’t suffer from ASD can show these symptoms too, leading to “autistic” being used as an insult by those ignorant of the pain such usage can cause.

Fortunately, such attitudes do change and language evolves. Today, the OECD wouldn’t publish this if the student association criticising economics teaching still insisted on calling itself the “French Post-autistic Movement” and complaining that their courses were “autistic”. I wonder what Vernon L. Smith, 2002 Nobel economics laureate would say. You can see him talking about being diagnosed with Asperger’s here.

Professor Smith often features on lists of famous people with ASD. These are useful in promoting a positive image, and showing that autism doesn’t stop you from developing your talent. There’s a downside to this as well though, with so many autistic geniuses turning up in movies and other media. Yourlittleprofessor quotes Luke Jackson who wrote a book 10 years ago when he was 13 about what it’s like to have Asperger Syndrome. Luke complains that television always shows high functioning autistic people who can do things like play the piano brilliantly without taking lessons, draw detailed renditions of buildings they had only seen once, or add complicated numbers in their head. “I find these television programs depressing,” he says. “I got all the nerdiness and freakishness, but none of the genius.”

Stereotypes, whether positive or negative, stop you seeing the person as an individual with his or her own strengths and weaknesses. As Emma puts it: “At school I’ve led autism awareness discussions because I just want my classmates to understand my differences, and to see that I’m not THAT different !” For those of us who don’t have an Emma around, luckily there are initiatives like Autism Awareness Day to help us understand ASD and the issues involved, and even be able to offer practical help to people with ASD.

Within the OECD itself, a project on mental health argues for a greater multi-sectoral approach to include issues such as autism and learning disabilities, especially the link to schools and school health programmes. Work by the Education Directorate on students with disabilities is also starting to consider autism, but as an Organisation, we could, and hopefully will, do more.

From our reporters at the scene

Useful links

OECD Centre for Educational Research and Innovation (CERI) work on Brain and Learning, with links to Understanding the Brain: Towards a New Learning Science and Understanding the Brain: The Birth of a Learning Science 

Autism organisations worldwide maintained by Action for Autism, India

International Society for Autism Research (INSAR)

4 Responses leave one →
  1. Beatrice Goldstein permalink
    April 2, 2012

    Since I am the lucky Grandmother of Emma, I am very happy to see that there is so much more awareness of Autism, (especially in France) and how very different each and every child (adult too) with Autism are from each other – just as there are differences in personality, intelligence and idiosyncrisies in any given group of people picked at random! I am proud that Emma has become the wonderful, bright and talented young lady that she has become, and definitely not shy about speaking up for herself and others. She has worked very hard to achieve her successes, and a special thank you is due to the professionals who have worked with her, to her supportive parents, and her loving sister!

    I love the calming blue lights that have become a beacon of progress and hope, so that other children (and adults) in the autism spectrum will get to realize the full potential that they might possess in the future! Thank you to all of you who are working so hard to see that Autism gets the kind of recognition it needs to continue the research to find causes and cures in the future. Keep up the good work – and may the soothing lights of blue cast this cause in the limelight!

    Can’t wait until I am able to get to France again Emma, and enjoy the musical shows that you have been performing in through your Music Teacher. You are the sparkling (blue of course) jewel in my life, and I love you so much. I hope to see others get to make the same kind of progress in their lives with the help and understanding from family and friends.

    I love you very much,

    Granny!

  2. April 2, 2012

    As Secretary-General of “Sur les Bancs de l’école” (At the School Desk) an association that helps the families of children with autism, I know how very important 2nd April is for all those families fighting day by day so that their children can grow up and lead satisfying, fulfilling lives. The UN wanted to highlight the need to improve the lives of children and adults with autism, so that they can live life to the full. That’s why on World Autism Awareness Day, monuments all over France and in many other countries are lit up in blue.
    We’re proud that the OECD turned blue last night to take part in the movement. Thank you to all those who helped make the Château sparkle so magnificently.
    Amanda McCaffrey-Horeau

    Secrétaire générale de l’association Sur les Bancs de l’école, association d’aide aux familles d’enfants atteints d’autisme, la journée du 2 avril est une journée très importante pour toutes les familles qui, tous les jours, se battent pour que leur(s) enfants puissent s’épanouir et grandir. Les Nations Unies ont voulu mettre en lumière la nécessité d’améliorer la vie des enfants et des adultes atteints d’autisme, et ce afin qu’ils puissent mener une vie remplie et épanouie. A l’occasion de cette journée mondiale de sensibilisation à l’autisme, de nombreux monuments, un peu partout en France et dans de nombreux autres pays, sont éclairés de bleu.
    Nous sommes très fiers que l’OCDE se soit parée de bleu hier soir pour accompagner ce mouvement. Merci à tous ceux qui ont participé à rendre le château scintillant et magnifique.
    Amanda McCaffrey-Horeau

    • January 7, 2013

      Jamie, I’m so glad you shared Rob’s blog with your reedars. A lot of people don’t realize the struggles that parents with children of autism have. Never judge a parent that has a child in the grocery store/mall/airport with a screaming child. You just never know what is really going on. They really are special people with loving hearts! Great post!

  3. Cortney Moorhouse permalink
    March 11, 2013

    New findings published in Pediatrics (Epub ahead of print) by the Kennedy Krieger Institute‘s Center for Autism and Related Disorders reveal that 70 percent of children with autism spectrum disorders (ASD) who have a history of severe language delay, achieved phrase or fluent speech by age eight. This suggests that more children presenting with ASD and severe language delay at age four can be expected to make notable language gains than was previously thought. Abnormalities in communication and language are a defining feature of ASD, yet prior research into the factors predicting the age and quality of speech attainment has been limited.

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