Travelling somewhere with my small cousin, Prabha Prakarshiki, is a nightmare for my uncle and aunt. She doesn’t sit still, runs in the train compartment, screams a blue streak in the airplane and asks her parents to sing songs to her until she is asleep.

Looks much like any normal kid in the house. But autism makes Prabha special.

Drooling, crying and responding in a special manner are considered to be very normal in babies. The true symptoms which draw the line between a normal and an abnormal baby come only later when the expectant response age to certain behavioural stimuli is attained. When Prabha turned one, she did not respond to the calls of her parents and had problem in speaking. Given that the growth and response time varies from children to children, her well educated parents, and everybody else in the family too, thought that she will also learn to respond a little later. It was only when she was found to have difficulty in sitting or walking properly, making eye contact with the person talking to her, mingling with other children and responding to the calls of nature even after attaining the age of two that she was taken to a child specialist.

With much difficulty, the doctor examined Prabha as she couldn’t sit still and kept screaming and not letting anybody come close except her father. The paediatrician declared that she was autistic. Since then, life of my uncle and aunt has been a battle to make their daughter’s life better each day.

Autism is known as pervasive developmental disorder (PDO) and is considered to be a result of neurological problems affecting the brain. The impairment of social interaction, communication and reciprocity, repetitive behaviour and abnormal motor behaviour are central to children on the autistic spectrum, ranging from mild to severe. Autistic disorder starts in early childhood (becomes apparent between the ages of two and three) and manifests itself as the child grows older.

Abnormal behaviour such as delayed or no response to stimuli, repetition of certain words or sounds (known in medical parlance as echolalia), reversal of pronouns (saying ‘you’ instead of ‘I’) are some of the many behavioural characteristics of autistic children.

Disabilities in India have traditionally been focused on physical disabilities. Our society isn’t mentally trained to easily recognise autism as disability. An autistic child may be able to write excellent poetry, but won’t be able to talk. Another child may be able to do a three-digit multiplication in the head, but won’t be able to hold a pencil. Such variable patterns make it hard to evaluate and quantify autism.

In 2005, autism was included as a disability in the Persons with Disability (Equal Opportunities, Protection of Rights and Full Participation) Act, 1995. The National Trust of India has been instrumental in spreading awareness about autism in the country since then. But there are only two schemes running for the help of autistic children. One is Aspiration, which is an early intervention scheme for the school readiness of autistic children aged up to six years of age. Another is a health insurance scheme Nirmaya for people with autism.

Although the right to education talks about imparting education to autistic kids in normal institutions in the absence (or presence) of special schools, special children are discriminated by teachers, mostly due to lack of awareness.

Central Board of Secondary Education provides additional time and amanuensis (one who takes dictation) for autistic children appearing in board examinations. They are also given a choice of set of other subjects (like music, painting) in lieu of languages or subjects with higher difficulty (like science or mathematics).

Lack of therapeutic facilities also prevents autistic children from joining the mainstream. Education and mainstreaming of these children thus fall on the mercy of few private special schools and the administration of ‘normal’ schools.

The government, after all these years, has now realised that the benefits would reach to the needy only if the people are aware. On this world autism awareness day (April 2), National Trust of India has organised a workshop to spread autism awareness. This is important since the government even lacks on the basic figures. There is no data present as to how many people in the country are living with autism. This also results in the absence of any concrete policy to address the issue.

I consider Prabha lucky. The diagnosis was early and correct which ensured early therapy. Prabha is now six years old and goes to school. As her immensely cooperative principal says, she has the mind of a genius. She solves mathematical sums mentally in seconds and loves running in the school ground. She is turning out to be a very melodious singer and is a chatterbox. Maybe slowly, but she has got started. And it’s time that the government did that also. 

(April 2 was the world autism day.)