To the Govt, autism isn’t a disability

All these boys have what is known as autism’, a life-long disorder, affecting one in every 500 individuals across the world. Autism primarily affects communication and social skills and the way people perceive the environment.

Renowned Spanish psychiatrist and advisor to the World Autism Organisation, Joaquin Fuentes, who is here to attend a workshop, says, “Autism is not a rare condition. It is, rather, rarely diagnosed. Its symptoms are evident either from birth or may begin to appear after a period of normal development, but it definitely appears by the time the child is two years of age.It can occur alone or with such other problems as retardation or seizures”.

“India and China are two major countries that have not recognised autism as a handicap. A recognition would help them provide facilities and benefits available to other handicaps.”

A person with autism has distinctive behaviour patterns. Recounting the example of one of his friends, Dr Fuentes says George could deliver speeches at public fora but was obsessed with time. He would be able to say the number of seconds he has been alive, and flight schedules of the Luxembourg airport would be on his finger-tips.

The exact cause of autism is not known, although research has determined the origin to be genetic with neurobiological manifestations. In case of siblings, if one of them is born with the disorder, the possibility of others being autistic would be 50 times more, says Dr Fuentes. In case of identical twins, the probability is heightened (70 to 90 per cent).

A person with this disorder could have specific areas affected.In particular, social and communication skills are impaired, even when the person has a high IQ. Fifty per cent of such people do not develop speech, while others may develop speech but could still have difficulty using language to communicate.

People with autism have restricted emotional involvement and their capacity for imitation and sharing is less. More often, their language and mannerisms (such as hand flapping) is repetitive and stereotyped. They love to talk about themselves. They also have a limited theory of mind and fantasy life. Elaborating on this, he says, “We all have mental states. We try and change others’ line of thinking. Political parties try to woo people to win votes or youngsters try convincing their parents for late-nights. An autistic would not do so. Moreover, they cannot empathise. They would not be able to imagine the grief a father suffers when his son dies in an accident”.

Advocating the use of the term people with autism’ instead of autistic’, Dr Fuentes says, “There isno objective way to say a child is autistic. One can say he fits into a criterion of autism. We don’t define people, it is a syndrome which is classified”.

Outlining the situation in India, Merry Baruah of the Action for Autism (AFA), a voluntary organisation, says, “Autism has not been recognised as a handicap in India. It is usually clubbed with mental retardation. There are hardly any professionals specialising in it. The lack of awareness, access to diagnosis and assessment and consumer-friendly medical testing have compounded the problem”.

The AFA runs a training centre for children and adolescents with autism.

Recounting experiences with her 24-year-old son Ranjit, Shyama Prasad (name changed) says, “We felt so helpless without guidance on bringing him up. Medicines would have a dulling effect. He would withdraw into a shell or turn violent, if he did not have his way. Now, it is slightly better. With AFA’s training, he has been able to work out mathematical problems, buy things from themarket, make friends and the like. Wish he had this training much earlier in life”.