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Showing posts with label Autism. Show all posts
Showing posts with label Autism. Show all posts

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. 

Saturday, March 26, 2011

$40,760 for autism from Dubai Twestival

The Dubai Twestival organizers with Yahya Almarzooqi and Sara Baker
We tweeted, we met and we raised money for the Dubai Autism Center (@DubaiAutism) on Thursday night (March 24).

Twitter’s biggest event -- Twestival® (or Twitter Festival) – was celebrated in more than 150 cities around the world, connecting off-line communities on a single day to highlight a great cause and have a fun event. Twestival is the largest global grassroots social media fund-raising initiative so far. 

Dubai Twestival 2011 raised $40,760, second only to Riyadh, Saudi Arabia. The sum was reached thanks to a generous donation of Dhs. 100,000 by sponsor du (the integrated telecom service provider in the UAE) and the venue hosts, the InterContinental Dubai Festival City.

Registering
The mysterious blue complimentary drink
We tweeted...
... and connected with Twestivals around the world
After registering, and enjoying a turquoise blue complimentary drink (to suit the logo colors of du!), we tweeted and mingled, recognized faces from avatars or checked people’s twitter handles on the cards hanging around their necks. There was also food on offer with 50 percent of the price going to the Dubai Autism Center.

But it was quickly time to start the action and raise some money.

PK Gulati
PK Gulati, one of the organizers and driving force behind Dubai Twestival, kick-started the talks. Reminding us that it was our fourth Twestival, he said the funds last raised have built a school in Liberia. There was indeed a screen showing the school.

After giving us some facts and figures about autism, here in the Emirates and worldwide, PK introduced Devina Divecha, one of autism’s biggest advocates, with good reason. Devina’s 15-year-old brother Karan was diagnosed with Autistic Spectrum Disorder at the age of three. Devina and her mother Adita blog about their experiences with autism in their daily lives at Autism and Us.

Devina told us autism is a “lifelong responsibility,” how having a relative with the disorder “changes your life,” and the difficulties her family, and others like them face. She said “you feel on the fringe of society,” and “we are often kicked out of restaurants and play areas, when we are with Karan.”

Devina Divecha
Devina’s plea: “Give us some respect!”

Sara Ahmad Baker, community service unit head of the Dubai Autism Center, was on the stage next to receive the generous cheque for Dhs. 100,000 from Yahya Almarzooqi, du’s representative at the event. Sarah said the increase in autism is scary but there is hope in finding a cure. “And when that happens, all of you present would have been behind it,” thanks to the sponsorship of, and donations to, the Dubai Autism Center by Dubai Twestival.

Aramex Shop and Ship donated Dhs. 5,000 and then the bidding began (see full list of items here), helped along by Marwan, DJBliss, our favorite Emirati DJ. There was an iPad2, three iPhones 4, Sony Ericssons, Nokias, vouchers from CineMama, and many more items, including a painting. Photographers Derrick Pereira and Candice Quadros were on hand to take portrait pictures at Dhs. 25 each and this year’s Dubai Twestival T-shirt was on sale for Dhs. 25. A live stream was going on all through the evening, following other Twestivals around the world thanks to the efforts of Paul Castle (@DaddyBird).

Njashanmal , Mita56 and Cnystedt
Lhjunkie, Yahya360 and Bhavishya
Theregos
DevinaDivecha and Boozychef
Binmugahid and Figo29
MissGoogle and Bilalhouri
Autism was brought onto the spotlight on the release of the 1988 comedy-drama “Rain Man,” starring Tom Cruise and Dustin Hoffman in an Oscar-winning performance. The film dispelled a few misconceptions about autism and improved public awareness of the disorder. But, after hearing Devina, not enough.

Ahd, Monya and Ola
Dubai's youngest tweep Bambinofang with father Fangpyre
Autism is a long disorder affecting one in 91 children. There is no medical cure yet, but early intervention can limit the disorder developing, according to the Dubai Autism Center. Autism affects a child’s development and learning the signs and acting early can help family and child integrate into society. Signs to look out for and act early on, according to the center, are: difficulties in verbal and nonverbal communication; lack of social interaction; lack of eye contact; repetitive movements and behaviors; aloofness.

And some facts and figures on autism that PK Gulati spoke about:
  • One in every 110 children is being diagnosed with Autism and the incidence of Autism is still rising
  • Early detection and intervention can freeze the signs of Autism
  • The most effective intervention programs is based on one-to-one basis
  • Forty-seven students are enrolled at the Dubai Autism Center
  • For every two students there is one special educator
  • Each child has a team of eight professionals working with him or her
  • The cost of providing an individualized intervention program is Dhs.138,000 per student; parents pay 18% of that amount
  • There are more than 200 students on the center’s waiting list
  • The center started an afternoon program in October 2010 to help students on the waiting list
  • The center is operating at full capacity from its current premises
  • A new purpose-built center to house 200 students is under construction and Dhs. 32 million are needed for its completion
  • Individuals and companies can help complete the new premises by donating in cash or kind (material) through the center’s web site.
Again, a big thank you goes out to the tweeps who made Dubai Twestival happen -- the organizers and core volunteers -- @PKGulati @CarringtonMalin @Esperanca @MissGoogle @Njashanmal @AbhaMalpani @Mita56 @MaliZomg @Mnystedt @Cnystedt @RobSingleton and @Floatr.

A big round of applause to the main sponsor, du (@duTweets); the venue sponsor, InterCon DFC (@InterConDFC); support sponsors @Aramex, @MomentaryAwe, @Niftee, @JashanmalBooks, Flip by Cisco, @DuPlays, Nokia, Ford Middle East; and all the volunteers on the night.

Join us at Dubai Twestival by going through my pictures. The names may sound funny... they are Twitter handles!