A spotlight

BY USHA RAMANUJAM ARVIND

When is your birthday?

When is your son’s birthday?

When is your husband’s birthday?

Ranjan likes asking his class teacher every time he sees her.

A whizz with figures, the talkative seven year old has fantastic recall and can rattle off dates, phone numbers and car registration plates in a flash. When a visitor comes home, he instantly identifies them by the number plate of their car, claims mum Sandhya.

Ranjan’s giftedness with numbers is however, undermined by a relative lack of social cognitive skills. At the age of three, Ranjan spoke very little. “Delayed milestones are quite common for boys and I assumed it was just such a delay,” explains Ranjan’s mum. But her son’s inability and unwillingness to make eye contact alerted his dad Sanjay that something was amiss. A visit to the speech therapist led to a preliminary diagnosis of echolalia, the ‘immediate and involuntary repetition of ambient sounds’.

And so began Sandhya and Sanjay’s tenuous journey into the unknown. Multiple visits to occupational therapists and psychologists followed. Nearly a year later, Ranjan was identified as high functioning autistic (HFA) and they registered with Aspect NSW’s principal autism provider, for follow up support.

While it came out of the blue for Sandhya, the pieces of the jigsaw finally began to fall into place. Ranjan’s hitherto unexplained behaviour patterns like set interests, repetitive actions, fixations and clear lack of fear, now made sense to her.

The devastated mother pulled herself together for Ranjan’s sake. “If I had to help my son, I had to re-educate myself to cope with the totally unexpected situation that life had thrown at me. Half the time, I was in tears. The sheer information overload and hectic schedules, in the weeks following diagnosis, were traumatising,” she recalls.

Language skills were her top priority, for they were needed for his immediate survival. In addition to this, his muscle tone was weak, and his fine and gross motor skills were poor. For the first time, she also learnt about ‘sensory processing therapy’.

Luckily for Sandhya, her husband has been quite the pillar of strength, sustaining the fragile family equation.

Ranjan thrives on physical contact and movement. He enjoys singing and dancing. He loves being cuddled and unwittingly ‘grabs’ other children in his class, singing with gay abandon. His classmates would respond to this ‘attention seeking’ behaviour with laughter.

Quite unlike Ranjan, the shy and reclusive Saakshi prefers the company of her iPad and Kindle. Avoiding eye contact at any cost, she would rather curl up quietly, lost in her own world, rather than make conversation. She hates being touched and gets anxious when new people approach her.

Ranjan and Saakshi are among an increasing number of Indian Australian children being identified as autistic. Literally meaning, ‘into one’s own self,’ such children are, in many ways, nuclear and isolated. The preferred term these days, is autism spectrum disorders (ASD) because of the highly individual and unique nature of each case, and overlapping of symptoms. Because of this ASD sufferers range from extremely ‘gifted’ to severely ‘challenged’.

Unravelling autism

Triggered by a neurological disorder that sets in by the first three years of birth, ASD is a lifelong developmental disability, ‘characterised by marked difficulties in social interaction, impaired communication, restricted and repetitive interests, stereotypical behaviours and sensory sensitivities’.

Sometimes, a child’s development is delayed from birth whereas others develop normally, but start losing social skills after a few years.

issue while others present unusual behaviours like spending hours lining up objects or obsessing over one interest.

Broadly, researchers agree that ASDs could include Autism, Pervasive Developmental Disorder and Aspergers Syndrome. These conditions share some of the same symptoms, but differ in terms of when the symptoms set in, how severe they are, and the exact nature of the symptoms.

At the higher end of the ‘functioning’ spectrum is Aspergers Syndrome, marked by highly developed language skills, but poor social communication strategies. These children often have no trouble with fact-based comprehension, but may have incomprehensible trouble with understanding social situations and can’t make friends.

Global epidemic

A relatively rare phenomenon even four decades ago, autism has transformed into a global health challenge, prompting governments to increase research funding and put guidelines into place for better therapy.

On April 2 this year, in celebration of World Autism Awareness Day and in a buildings around the world were lit up in blue. This included the Sydney Opera House, Charminar, Humayun’s Tomb, Ice Bubble, Empire State Building and Al Burj.

Statistics now indicate that ASD is more common than cerebral palsy, diabetes, deafness, blindness and leukaemia, with boys being five times more likely to be diagnosed than girls. One in 100 children in Australia are autistic. The figures are higher in the US (1:88) and UK (1:55), and even higher in South Korea (1:38).

For that matter, no ethnic group is immune to this neurological disorder. In India, there has been a staggering ‘six-fold increase’ in the new millennium, according to local media forecasts. From an estimated 20 lakh cases in 2003, there are reportedly 10 million autistics at present.

However, it is hard to be accurate given that intellectual disabilities are still virginal territory and many cases go unnoticed, either because of ignorance or lack of access to quality facilities. Social stigma is an insurmountable issue, with many families still in denial or opting to exclude the child from social situations.

A pioneer case was that up, even when the best specialists in the US did. She continued loving and teaching him, until the young lad responded.

On April 2 this year, World Autism Day, Krishna’s fourth book, Why Me? An Inward Journey, was released by the Chief Justice of the Supreme Court of India. His previous books Wasted Talent, How Krishna Broke Free of Autism and From a Mother’s Heart – A Journal of Challenge, Survival and Hope document the inward odyssey.

“Yes, it has been very much a lonely journey to this day,” responded Jalaja by email. “Without the help of relatives, friends, society, and above all, [the] Government.

Parents are very lonely in this ordeal, they are very much alone not only in India, but all over the world. Coping with autism is like coping with the unexpected. These children don’t have the skills to be mainstreamed and integrated. Can they play cricket or softball? So, we need to give them skills,” she stated.

Since 1971, Jalaja has lobbied extensively with government bodies to establish a hugely successful autism centre in Chennai and better access to therapy and education all over India.

At the first South Asian Autism Network (SAAN)