A Silent Agony

In the last 25 years of conflict psychological trauma and related diseases limited the scope of addressing other serious disorders like Autism. With no infrastructure in place to help develop the skills of Autism patients, they are left at the mercy of their fate. Durdana Bhat and Shiekh Tabish report the disability that is forcing many parents to suffer in silence

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Furqan Javed

 A lovely smile on Furqan Javed’s face is irresistible. This 8-year-old kid from old Srinagar’s Saida Kadal seems absorbed in his own world. He sits calmly and chuckles frequently while playing with his fingers. He doesn’t respond as normal kids do. The only thing that excites him is music. He moves his neck in excitement whenever it is in the air. But his gestures defy his age! Furqan is no ordinary child. Unlike kids of his age, he is too innocent to realise that he is having a learning disability or Autism!

The ‘shocking expose’ about his health surfaced six months after his birth. He wouldn’t respond. And when the same state prolonged, his parents grew concerned and consulted a doctor. After medical checkups, medicos revealed something which left his parents heartbroken. “Your kid is suffering from Autism,” the doctor confirmed.

Soon the grieving parents were seen consulting one doctor after another for their child’s sake. But the disability proved above any diagnosis. Though certain medical tests followed, which only ended up improving his movement, but the parents were told that their child’s disability is a lifelong affair. And soon, Furqan was put under special care.

“He is my doll,” says Furqan’s mother, holding him close to her. “He is all I have in my life.”

The only form of communication which Furqan seems to know is to wear a lasting smile on his face. This is his signature posture.

Science has identified Autism as a neurological disorder, begins in early childhood. It affects three crucial areas of development: verbal and non-verbal communication, social interaction and creative or imaginable play.

In Srinagar’s Government Psychiatric Disease Hospital, the rush of Autistic kids keep pouring with their parents. The medicos treating these kids say such kids have learning difficulties and below-average intelligence.

Dr Arshid Hussain, a senior consultant psychiatrist at the Hospital, says Autism is a lifelong disability affecting the way people communicate and interact with others.

“A child suffering from Autism has definite symptoms,” Dr Hussain told Kashmir Life. “Such a child will never make eye contact. Besides, it requires a great deal of effort to get a response from such child.” In many cases, he says, some children enjoy and initiate social interaction, including hugging their parents and other signs of affection.

Dr Hussain says Autism doesn’t need medical treatment, but a remedial treatment – which is something, not easily available in Kashmir. “And this forces many parents to take their children outside the state for the treatment,” he says.

He recalls one such incident wherein his colleague had to leave her medical profession in Kashmir and settle in New Delhi for the sake of treating her child’s learning disability. “It was a minor learning disability, and not Autism,” Dr Hussain says, “but still negligible remedial treatment facilities available in the valley forced her to shift her base.”

In the same Hospital, Dr Arif Maghribi, a senior psychiatrist who has previously worked with UNAIDS and Action-Aid International as mental health officer, says Autism leaves many parents emotionally troubled. He narrates an incident wherein a mother of an Autistic child had to endure a shock by learning her child’s disability.

“She wanted to get her child enrolled in the premier educational institute of the valley,” says Dr Maghribi, who is one of the few Kashmiri doctors trained by Royal College of Psychiatry, London. “Later on, when she learnt that her child can’t attend the school like normal kids, she was left heartbroken.”

Parents should consult a doctor immediately if any of the specified signs are detected in a child, Dr Maghribi advices: “Generally the initial three years of a child’s life are very critical. During this period, parents of an autistic child should consult a doctor immediately.”

 Autistic, but gifted

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Furqan being fed by his mother

Autistic kids are gifted in certain talents, continues Dr Magribi, they have some extraordinary creativity in them.

In fact, one medical finding has established that Autistic children display certain musical or mathematical abilities that most adults will never master, “even with years of dedicated practice?”

“Practice alone isn’t going to turn out the next 6-year-old Mozart [an autistic musical genius world has ever seen],” Dr Magribi says.

Most of the autistic kids might remarkably exhibit early abilities in speaking at 3 months old and reading at the end of 1 year after birth. “Certain children do great in computing, others in reproducing complex pieces of music after hearing them just once,” Dr Magribi says.

While sharing his own experience, Dr Magribi says one child had a tremendous appeal for music. He was later sent to music school where he is doing “tremendously well now”. Another Autistic child had an irresistible ability to segregate electronic appliances into its parts and then would fix them up.

Dr Maghribi, who has treated over 2000 patients suffering from Schizophrenia, PTSD, Drug-addiction, Exam phobia and other neurotic disabilities, says a team of neuro-paediatricians, psychologists and speech therapists help in diagnosing Autism in kids.

“Once it is established that the child has Autism,” he says. “The therapy [which ranges from medical intervention to behavioural exercises to develop social skills and most importantly, speech therapy] is put in practice.”

Over the last five years, scientists have identified a number of rare gene changes, or mutations, associated with Autism. Most cases of Autism, however, appear to be caused by a combination of autism risk genes and environmental factors influencing early brain development.

Experts estimate that every 2-6 children out of 1000 have Autism. The prevalence rate of Autism in Kashmir has been estimated as 1 in 250.

Presently, few private special units for Autistic children exist in the valley. Those include Helpline in Chanaporah, Voluntary Medicate Society in Bemina, Zeba Aapa Institute in Anantnag and Chotay Taray in Rajbagh.

“I have also established a rehabilitation centre for these children,” says Dr Maghribi who is running an institute namely ‘Step by Step Institute of Learning’ for Autistic and for other disabled children.

Arjumand Makhdoomi, the founding head of Chotay Taray Foundation, says his institute is a special school-cum-rehabilitation centre for mentally and physically challenged children.

“Twelve autistic children are currently enrolled in my institute,” says Makhdoomi, 34. “Autism is incurable. However, proper treatment and therapies help autistic children to live a complete life.”

We teach them daily routine activities like brushing, face washing, proper eating procedure etc, he says, “We also teach them how to write, read, simple mathematics and also daily life education.”

Chotay Taray is currently having 13 operational areas in two districts of Kashmir – one in Srinagar, the other in Budgam. In these operational units, a home-based treatment is provided at people’s doorsteps.

Back to Saida Kadal, sighting a bar of chocolate has flashed an excitement on Furqan’s face. But he drops it quite often as he seems too weak to grip it. His mother is silently watching him nearby. She craves for the moment when he will get on his feet. But for Furqan, nothing matters more at present than chuckling around!

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