Not a disease, but a developmental disorder. Not low IQ, but a lack of social communication skills. Not medication, but training. Not mental retardation, but autism. And it’s all about timely detection and correct diagnosis. With knowledge comes acceptance and a step in the right direction. Autism is a life-long phenomenon, but with intervention, a change for the better is eminently possible.
This is the core message that a team from the Delhi-based Action for Autism (AFA) is trying to impart to its captive audience of over 100 parents and professionals at a four-day workshop organised by the Autism Society, West Bengal (ASWB). The Tollygunge-based Society has been formed primarily as a support group of and for parents.
“We are battling not just the fact that we have children with the disorder, but also ignorance,” explains Merry Barua, director of AFA. “Because our children look normal and are usually academically capable, nobody realises that they have a disorder. In that way, the kids lose the initial years that are so crucial to the training.” Her son, now 22, was detected at age four. “He is much better now, and attends our vocational skills classes. But if he had been detected earlier, perhaps things would have been different.”
Indrani Basu, secretary of ASWB, is also a teacher at Manovikas Kendra, dealing with autistic children and training the professionals there. Both her sons are autistic. Her older son was diagnosed at 14, too late for any intervention programme. Now, at 19, he has stopped attending a mental health centre. “I always knew something was wrong with him. The restlessness, short attention span… But the doctors told me I was being obsessive,” she recounts.
Just like namesake Indrani Basu, joint secretary of ASWB, was told “Bengali mothers are hypersensitive” by a leading child specialist who claimed her son was fine. “After useless MRIs, ECGs and CT scans, they tell you your child is normal. What they don’t know is that autism can’t be detected that way. It’s in the behaviour.”
Eighty per cent of autism patients are male. It is genetic to a certain extent. Patients generally have a high degree of numerical capability. They need structure and routine. In the Constitution, it is equated with mental retardation. If diagnosed with autism, the family and the patient do not get any concessions, as it is not mentioned as a specific disorder under the People with Disabilities Act.
Indu Jaiswal, director of education at AFA, says educating doctors, teachers and policy makers is the most important step. “Things are changing, because diagnosis of autism is on the rise. But the government is still ignorant. Our aim is to change policies.”
These struggling parents have come a long way in building a better life for their children, and yet, are still some distance from their goal of building a national centre for autism.