::: Star Weekend Magazine :::

Endeavour

Facing Autism with Pragmatism

Mashruk M. Huq

About seven or eight years ago, I watched the movie Rain Man. What a classic, (a worthy acting gig from Tom Cruise for a change). Dustin Hoffman was simply masterful. From that movie was my first encounter with the term autism. As Hoffman's character in the movie "Raymond Babbitt" was autistic. Exceptionally unconventional, Hoffman's character could calculate cards at the casino and solve complicated math problems faster than a calculator.

The majority of the people of our (advanced-in-the realm-of-cell phones-and-pirated-DVD's) country are completely in the dark about autism. I've spoken to people from various age groups about autism in the last week and not one of them had a clear idea of what the word even means. Two or three that had heard about it, said something along the lines of, "Is it like, when people are, uhm, crazy?"

Autism is a life-long developmental incapacity that appears before the age of three. More common than childhood cancer or Down syndrome, it's a "spectrum disorder", which means the predicament has wide-ranging scales of severity. Autism hinders individuals from properly understanding what they see, hear and sense. From early childhood there is severe impairment in communication and social interactions, and actions are often repetitive and static. The degree of severity differs from person to person, but every case of autism displays an impairment in social interaction, social communication and imagination. Autistic people can't interpret facial expressions or emotions, yet one autistic person in 10 demonstrates brilliant proficiency in the vicinities of music, calculation or memory.

Enter Dr. Rownak Hafiz, Chairperson of the Autism Welfare Foundation (AWF) - the first of its kind in Bangladesh. Soft spoken and sharp, Dr. Rownak Hafiz has dedicated her life to the cause of conveying awareness and dealing with autism. She is the epitome of patience. "Without patience you'll never be able to understand that autistic children do communicate... they just have their own, unique ways of doing it. At AWF, our motivation and foremost priority is to try and ensure that these children can grow up to lead as normal lives as possible," she explains.

April 4th, 2004 saw the birth of the Autism Welfare Foundation. A non-profitable, non-government, welfare organisation, AWF was created with the aim of guiding and educating autistic children to achieve and pursue their utmost strengths and interests, and of course, to ensure autistic children are one day able to sustain themselves. Presently, AWF is operating a training/education centre which provides one-on-one intensive education for autistic children and adolescents. The emphasis is given on communication and social skills, behaviour and functional academics. AWF also runs a vocational training center for students above 10 years of age.

"My own (teenage) daughter is autistic, so I know what parents (can) go through," asserts Dr. Hafiz. "I've been dealing with this since the early '90s, and let me tell you quite frankly that back then, some of the major medical institutions in Bangladesh boldly stated that my daughter was not autistic. It was only after I had her examined at University of Iowa (USA), that we were certain of her autism. That's where I observed, learned and understood what autism truly is, and how autistic children need to be cared for."

Dr. Rownak Hafiz and her staff of 20 instructors and some 10 assistants granted me the privilege of an extensive tour of AWF. Located in Shyamoli, Dhaka, Dr. Hafiz and her staff care for 38 autistic children at AWF premises. I was honestly preparing myself to sight some poignant faces during my visit there, but to my complete surprise, I was privy to some remarkably positive and lively children at the organisation. The little ones greeted me with bashful handshakes, surprised glances and excited smiles; one of them pulled me down for a peck on my cheek. "They feel comfortable here," explains Dr. Hafiz. "Some of the children you see barely even played with toys not too long ago. Now, not only do they play, some actually ask for things by referring to pictures on the classroom walls. That in itself is a major improvement in an autistic child." I thought these children were sick...? What then, pray tell, is the "cure"? "There is no quick remedy or magic cure for autism," she replies with a smile. "Their routine of learning, playing, colouring, singing, weekly outings etc - those are the best ways to keenly observe them, socialise them and make them feel comfortable in everyday society. Thus we're able to learn and subsequently deal with the autistic characteristics of each child."

80 per cent of autistic people are male. It's key to remember that autism is a brain based developmental disorder, and not a result of poor parenting. However, due to a lack of education in remote areas of Bangladesh, parents are unaware that their loved ones may very well be the victims of a problem that a local doctor, priest or witch doctor can't cure. "The biggest obstacle we now face is the extreme lack of social awareness," adds Dr. Rownak Hafiz. "Plus, we could definitely use some financial support to help us reach the word of autism in villages and small towns. Only through the involvement of parents, professionals, teachers and the general public will there be proper clarity and understanding of autism throughout our country."

Scientists still don't know what actually causes autism, though genetic factors are questioned. Research has also shown that autism may be linked to a range of conditions affecting brain maturity that occur before, during or very soon after birth. "I firmly believe that early intervention is the most competent device when it comes to dealing with autism. The sooner an autistic child gets the proper attention, the better chances s/he will have of leading a normal life," says Hafiz.

The Autism Welfare Foundation is located at House # 428, Road #2, Baitul Aman Housing Society, Shyamoli, Dhaka.
Dr. Rownak Hafiz can be reached at 8121759 or 0189447233.