What is hard for parents of an autistic child, and what helps

What was hard for us?

When Anwesha was 4, she did not say a word. She would run away from us. We were very worried. We took her for therapy in Cuttack, then in Bhubaneswar, and did not see much change. We kept looking until we found help. Even today, she can get angry very fast.

What do other parents find hard?

• Stress. Caring for an autistic child can strain a family: in the mind, with money, and in the body.
• Lost sleep. When a child sleeps badly, parents lose sleep too.
• Going out. In a Bhubaneswar study, one parent said even a shopkeeper scolded them.
• Stigma and family pressure. In one study, a family at first thought the child was “mentally ill”.
• Blame. One mother in Goa was even blamed by a doctor for “poor parenting”.
• Late answers. In one Bhubaneswar study, most parents had never heard of autism, and they saw about 4 doctors on average (1 to 6).
• Money and travel. Families in that study paid ₹1,000 to ₹5,000 a month for therapy, and some travelled as far as Bengaluru.
• In India, most of the daily care often falls on the mother.
• Brothers and sisters can feel left out.
• Worry about the future: who will care for the child later.

Did we cause it?

No. The way you raise your child does not cause autism.

What helps parents?

• Learn about autism. In a Lucknow study, parents who knew more, and had help from family and friends, felt less burden.
• Share the care. Let family and friends take some jobs. They usually want to help.
• Take short breaks, even a five-minute walk or a call to a friend.
• Look after your own health and mind.
• Meet other parents. A support group can make you feel less alone.
• Give brothers and sisters some time alone with you.
• Check advice before you act on it. Wrong information spreads fast on social media.
• WHO has a skills course for parents of autistic children, and it has been tried in India. Ask your child’s doctor about parent training.

Where can I get help?

• Tele-MANAS: a free government helpline for your own stress, open day and night. Call 14416 or 1-800-891-4416.
• Ask at your district hospital for the free early intervention centre (DEIC), mainly for children under 6.
• The National Trust’s Niramaya health insurance covers people with autism, up to ₹1 lakh.

Questions parents ask