Published in SouthAsia (May 2009)
Autism Spectrum Disorder is the fastest growing neurobiological condition in the world and on the rise in countries in the South Asian region. There is still little awareness and help available for autistic children in these countries, observes Ayesha Hoda
“Hello. Allow me to introduce myself to you. My name is autism. Perhaps you know me or know of me. I am a condition, “disorder” that affects many people. I strike at will, when and where I want. Unlike Downs Syndrome or other birth “defects,” I leave no marks on those I strike. In fact, I pride myself on the ability to infiltrate a child’s life, while leaving him or her strikingly handsome. Many people may not even know I am there. They blame the child for what I cause him or her to do. I am autism and I do as I please.” (My Name is Autism, Author: Anonymous)
I came across this poem while randomly reading about health and human psychology on the internet. This led to the discovery of the hidden world of autism and the various autism awareness campaigns that have only recently gained prominence in our part of the world.
Autism Spectrum Disorder (ASD) is a developmental disability affecting 1 in 100 individuals, according to recent world estimates. ASD is on the rise in India, Pakistan, Bangladesh, Sri Lanka, Nepal, Bhutan and the Maldives. It is the world’s fastest growing neurobiological condition.
ASD was first described in 1943 by Johns Hopkins psychiatrist, Leo Kanner, and then by Austrian pediatrician, Hans Asperger in 1944. Kanner used it to refer to children who were socially withdrawn, struggled to acquire spoken language and could become so preoccupied with one thing that they would be completely indifferent to everything else in their environment.
Asperger named it the “Asperger syndrome.” He identified a pattern of behaviour and abilities in four boys, which he called “autistic psychopathy,” meaning autism (self) and psychopathy (personality disease). This pattern included “a lack of empathy, little ability to form friendships, one-sided conversation, intense absorption in a special interest, and clumsy movements.”
Asperger used the term to describe children who developed strange obsessions and were socially awkward, yet highly verbal and seemingly quite bright.
To understand the condition better, I approached a remedial therapist in Karachi, Fathma Naqvi, who explained, “Autism can be mild or severe. Symptoms generally appear before the child has turned three and include extreme difficultly in communicating and interacting with others, and repetition of any action or word. An autistic child prefers to play alone and does not make eye contact.
Some children with ASD are gifted with certain unique talents. For instance, they may be able to perform complex calculations which their peers are unable to or solve a complex puzzle which no one else can as the child has outstanding visual-spatial abilities. However, not all autistic children are extraordinarily bright.”
Some autistic children also have certain abilities to learn languages or artistic abilities. Further questioning and research revealed that the debate on causes of autism is still going on. Most experts insist that it runs in families and is genetic while others are of the view that children are not born autistic but become that way when their parents, especially mothers, are cold and uncaring. Dr. Eric Hollander, director of the Seaver and New York Autism Center of Excellence, while answering questions for CNN, said, “In fact, of all neuropsychiatric disorders, there’s a stronger genetic predisposition for autism. It’s also clear that early environmental experiences can play an important role in modifying how these genes develop.”
Autistic characters have been depicted in western, particularly American, literature, films and television serials. For instance, Arnie Grape, (played by Leonardo DiCaprio) in the film What’s Eating Gilbert Grape?, and Seth Garin, in Stephen King‘s book The Regulators, are two fictional characters with autism. However, in fiction, the focus is usually on the extraordinary capabilities that autistic individuals have which fascinate the audience or readers.
Michael Fitzgerald, of the Department of Child Psychiatry at Trinity College in Dublin, has speculated about historical figures with autism in his numerous journal papers and books. He includes famous figures like painter Vincent Van Gogh, philosopher Immanuel Kant, writer George Orwell and German dictator Adolf Hitler, amongst others, in his lists. Other academics, journalists and autism professionals have also made similar interesting speculations.
Looking at the rising number of children with ASD, the United Nations General Assembly passed a resolution designating 2nd April as World Autism Awareness Day, starting in 2008. US President Barack Obama and First Lady Michelle Obama were sent a CD copy by UK Autism Foundation of the Autism Song, Open Every Door to mark World Autism Awareness Day 2009.
Japanese artist and widow of John Lennon, Yoko Ono auctioned her new work for an autism charity on the day at the UN lobby in New York. Her seven-foot mural, entitled Promise depicted fluffy white clouds against a clear blue sky and was made up of 67 jigsaw-like pieces.
These pieces in the installation were broken down, signed by the artist and auctioned off. Ono expressed the hope that all 67 pieces would be reunited once a cure for autism was discovered.
In South Asia, we have some examples of awareness campaigns related to ASD. For instance, Ivan and Charika Corea, parents of an autistic child, have launched a massive Autism Awareness Campaign in Sri Lanka. There are 30,000 autistic people in Sri Lanka, according to international experts and there will be a massive increase in 5 years time, in Sri Lanka and all over the South Asian region.
The World Autism Awareness Day 2009 was also celebrated in India, Pakistan, Sri Lanka, Bangladesh, etc. A week-long campaign was organized in India to create awareness. Focus was also on helping families from an educational, medical and legal standpoint.
According to the Autism Society of America, there is no single known cause or cure for autism but it is treatable. Children do not outgrow autism but studies have revealed that early diagnosis and intervention can lead to significant improvement. People with autism can live full, healthy and meaningful lives with the right services and support.
People such as Krishna Narayannan from India have broken free from autism. In Narayannan’s case, ayurveda brought a breakthrough, apart from education and music. He co-authored a book with his mother, entitled Wasted Talent, an account of how he overcame all the hurdles to finally open his mind to his parents. They also included advice on therapies and techniques. “The title reflects ultimately my belief that the talent of an autistic is wasted away if it is not nurtured,” he stated when the book was published.
The toughest part perhaps is for parents to accept that their child is different from others. They need to take a proactive approach to learning about the condition and its treatment while working closely with others involved in their child’s care. Parent and family education has been shown to reduce family stress and improve a child’s functioning.
Perhaps more awareness campaigns in developing countries, especially through the mainstream media, will enable people to know and understand ASD better. These may eventually lead to the establishment of more support organizations and introduction of special techniques in educational institutions. This is extremely important, as Narayannan opines, “No challenge is greater than the challenge to educate the autistic because they are restless and their rigidity and rituals interfere with learning. They can neither write nor talk.”
People should identify and appreciate the diverse abilities that autistic children have. As Diane Bubel has said, “By raising our voices together, we are creating a world that celebrates children for their abilities.”
It’s time to promote a positive perception and greater social understanding of the mysterious world of autism.