Monday, April 2, 2012

Time to shine a blue light on autism

Once you get over April Fool’s Day, April is the month to “shine the light” and raise awareness on autism.

On April 2, the fifth World Autism Awareness Day, the world is going blue to raise awareness of autism with Light It Up Blue.

In its third year, Light It Up in Blue is a unique global initiative by Autism Speaks. Iconic landmarks around the world will today Light It Up Blue to urge vigilance on autism, a pervasive disorder that affects tens of millions.

Autism is a general term used to describe a group of complex developmental brain disorders -- autism spectrum disorders -- caused by a combination of genes and environmental influences. These disorders are characterized, in varying degrees, by social and behavioral challenges, as well as repetitive behaviors.

Autism Speaks is the world's leading autism science and advocacy organization. Suzanne and Bob Wright, the grandparents of a child with autism, founded it in February 2005. Since its inception, Autism Speaks has made enormous strides, committing over $173 million to researching and developing innovative resources for families.

My first awareness of autism, possibly like many others, was Rain Man, the 1988 drama film that tells the story of an abrasive and selfish yuppie, Charlie Babbitt (Tom Cruise), who discovers his estranged father has died and bequeathed all of his multimillion-dollar estate to his other son, Raymond (Dustin Hoffman), an autistic “savant” of whose existence Charlie was unaware.

Although Rain Man's portrayal of Raymond’s condition was seen as inaugurating a common and incorrect media stereotype that people with autism typically have savant skills, the Oscar-winning movie also dispelled a number of misconceptions about autism and improved public awareness of the failure of many agencies to accommodate autistic people and make use of their abilities.

Devina and Karan (photo from Devina's blog)
My knowledge of autism was largely improved over the past couple of years through my friend Devina Divecha (@DevinaDivecha on Twitter), a journalist, food blogger, photographer and autism awareness campaigner. Devina’s 15-year-old brother, Karan, was diagnosed with Autistic Spectrum Disorder (ASD) at the age of three.

At her blog “Autism and Us,” and through Autism & Us -- Adita, Devina and Karan, Devina and her mother Adita blog about their experiences with autism in their daily lives. Simple tasks we take for granted, like going to the bathroom in a mall or going to the cinema, are practically impossible for Karan.

Devina writes: “Karan is low-functioning on the autistic scale and is non-verbal (for the uninitiated that means he cannot communicate through words although he is able to make unintelligible sounds). He can be quite hyperactive (sometimes to the annoyance of his sister), yet has times when he is amazingly calm. He loves to be hugged, which opposes the stereotype of autistic people who don't want to be touched. When he learned how to eat on his own with a spoon, we all whooped with joy.”

The blog goes a long way in helping raise awareness through Adita and Devina’s experiences about life with Karan. And as Devina writes: “It's not all Rain Man, you know."

On this special day, Devina's mother Adita sums it up in "A mother's thoughts on Autism Awareness Day," by celebrating Karan's achievements so far. It is a must read that I will not spoil for you..

Autism is a lifelong developmental disability that affects how a person communicates with, and relates to, other people. It also affects how autistic people make sense of the world around them. It is a spectrum condition, which means that while all people with autism share certain difficulties, their condition will affect them in different ways. Some are able to live relatively independent lives but others may have accompanying learning difficulties and need a lifetime of specialist support. People with autism may also experience over- or under-sensitivity to sounds, touch, tastes, smells, light or colors.

The U.S. Centers for Disease Control and Prevention (CDC) has updated its estimate of autism prevalence in the United States to 1 in 88 children -- a tenfold increase in prevalence in 40 years. Careful research shows this increase is only partly explained by improved diagnosis and awareness. Studies also show autism is three to four times more common among boys than girls. An estimated 1 out of 54 boys and 1 in 252 girls are diagnosed with autism in the United States.

Iconic buildings light up blue worldwide
Intercon Hotel at Festival City, Dubai, lights up blue
The United Nations General Assembly unanimously declared 2 April as World Autism Awareness Day (A/RES/62/139) to highlight the need to help improve the lives of children and adults who suffer from the disorder so they can lead full and meaningful lives.

The December 18, 2007, resolution was tabled by Qatar through the support of HH Sheikha Mozah Bint Nasser Al-Missned, wife of the Emir of Qatar HH Sheikh Hamad Bin Khalifa Al-Thani.

UN Secretary-General Ban Ki-moon says the day should spur global action to combat the “unacceptable” discrimination, abuse and isolation that people with the disorder and their loved ones face.

“Autism is not limited to a single region or a country; it is a worldwide challenge that requires global action,” states Mr. Ban’s message. “People with autism are equal citizens who should enjoy all human rights and fundamental freedoms.”

“Our work with and for people with autism should not be limited to early identification and treatment; it should include therapies, educational plans and other steps that lead us towards sustained, lifelong engagement… We also need to promote further research, train non-specialized care providers, and enable the autism community to more easily navigate care systems to obtain services that can support and mainstream individuals with autism,” adds the UN secretary-general.

UN stamps released today to honor autism
In New York, Vienna and Geneva today, the UN Postal Administration (UNPA) released six commemorative postage stamps and two collectible envelopes dedicated to autism awareness, with images created by artists who have been diagnosed with autism. The stamps will send a “powerful message to people around the world that talent and creativity live inside all of us,” Mr. Ban says.

The UN is the only organization in the world, which is neither a country nor a territory that is permitted to issue postage stamps. It is also the only postal authority to issue stamps in three different currencies -- the U.S. dollar, the Swiss franc and the euro.

Mr. Ban says: “The annual observance of World Autism Awareness Day is meant to spur such action and draw attention to the unacceptable discrimination, abuse and isolation experienced by people with autism and their loved ones.  As highlighted by the Convention on the Rights of Persons with Disabilities, people with autism are equal citizens who should enjoy all human rights and fundamental freedoms.

“Let us all continue to join hands to enable people with autism and other neurological differences to realize their potential and enjoy the opportunities and well-being that are their birthright.”

Awareness months are by no means limited to 30 days per year. April will hopefully encourage people to learn more about autism as I have done and possibly help in some way or just accept that we are not all the same.

This post is dedicated to Karan, who I hope to meet some day, and to Devina and her family.