Living with an autistic child is tough. But the rewards of effort are high, discovers Shirley Singh

WAY past the age of one, Anshu's son Rishabh did not recognise her. Initially, she laughed about it. By the time he was two, she knew there was a problem.

The word 'Autism' was coined by Leo Kanner to describe a disorder in children showing marked self-absorption and aloofness, resulting in severe social and behavioural problems. As one parent of an autistic child put it: "They live in their own world." Autism is a complex developmental disability that typically appears by age three, and remains for life. It is a brain disorder that affects three areas of development - communication, social interaction and creative/imaginative play.

Autistic individuals respond abnormally to people, objects, events and sensations in their environment. The simple reason for this is that they experience the world in a concrete, primary way, without associated meanings and social contexts.

Tackling Autism
Autism is a challenge because there is no defined way to deal with it. It is a spectrum disorder, which means that although autism is defined by a certain set of behaviours, individuals can exhibit any combination of the behaviours in any degree of severity. Autistic individuals may often appear mentally retarded, but what distinguishes them is uneven development.

Dr Vibha Krishnamurti, a paediatrician specialising in developmental disorders, explains, "An autistic child may talk like an one-year-old, but solve puzzles like a four-year old." There is no cure for autism, but structured training in early childhood helps greatly. Key areas of guided development are:

• Speech therapy: The aim is to teach the child not speech but meaningful language and communication. Therapists or parents play with the child games that build the desire to communicate. Speech therapist Deepa Nair advises: "Work with your child, but don't make your love conditional to speech. A child learns best in a free non-demanding environment. So do your best, and the rest will follow."

• Occupational therapy: Through simple play activities like scribbling or stacking rings, occupational therapy improves a person's ability to function in daily life, to enable the child to perform basic tasks like caring for oneself, working, playing, going to school, eating and going to the bathroom.

• Special education: Special educator Shiante Lobo explains, "These children don't learn spontaneously, incidentally or naturally. Through play, we bring them as close as possible to mainstream education." The aim is to integrate the child in a regular school.

• Drugs: These can be useful when a child gets too violent or the convulsions threaten to affect the brain. But, warns Dr Krishna-murthi, "Do not use drugs as a quick fix. Try to find the cause of your child's behaviour. Maybe the feel of the chair is irritating him; using a drug to calm him then is not okay."

• Parental support: Ultimately, parents are an autistic child's best support and hope. "You need therapies just to show you the way," says Chitra Iyer, who has a five-year-old son. Alka Baghdadi, whose child is 11 years old, affirms, "A mother knows her child best and can do a wonderful job of helping him cope. Bombarding the child with too many therapists only confuses him."


Signs That Signal Autism
The diagnosis must be made by observing an individual's behaviour. Some of the traits that point towards autism include flapping fingers in air; spinning objects; inappropriate attachments to objects; may not want to cuddle or be cuddled; little or no eye contact; insistence on sameness; difficulty in expressing needs (uses gestures instead of words); repeating words or phrases in place of normal, responsive language; talking at others (in monologue), without letting them speak; laughing, crying, showing distress for reasons not apparent to others; prefers to be alone; throws tantrums; has difficulty in mixing with others; is unresponsive to normal teaching methods; sustained odd play; apparent over-sensitivity or under-sensitivity to pain; has no real fears of danger; noticeable physical over-activity or extreme under-activity; uneven gross/fine motor skills; not responsive to verbal cues; acts as if deaf although hearing tests in normal range.

From Parents:
Know that your child loves you. Autistic children simply don't know the standard social ways of expressing affection. Says Dr Krishnamurti, "Hugging is unpleasant to most autistic children; a girl used to scratch her mom when she was happy!"

Know your child. Every child needs understanding; autistic children need it more. "Aim to be a little scientist and try to figure why your child does a particular behaviour," suggests Rita Jordan, reader in autism studies at the University of Birmingham. Especially since each autistic child is very different, you will have to slowly unravel how your child relates to the environment, mentally and physically.

Accept that your child is autistic; do not be ashamed of it. Take him along everywhere... If you accept your child, others will accept him. Parent Anand Gumtha says, "You can't be defensive. Be proud of your child and upfront about the condition; that gives the child confidence." Shares Baghdadi, "If my son wants to flap in public, I let him. It helps him relax; why should I worry what people are saying? Accept autism as part of life."

Teach life experiences . An abstract education is not going to help your child. Rather, teach the child to live independently and build specific career skills.

See life beyond autism. Says Gumtha, "When new parents join the support group, we encourage them to talk about themselves and not just about the child. You can't be immersed with the problem all day." Rita Jordan reminds us, "If a child is acting difficult, it is not because he's trying to trouble you. He is just trying to make sense of a difficult world."