BENGALURU: Neena (name changed), the mother of a 19-year-old autistic son, blamed herself for a long time. She thought her taking an X-ray, not realising she was pregnant at the time, had caused her son to be autistic. Today she knows better, being an art-based therapist herself.
She wants for her son an independent life and an ability to cope with its uncertainities.
Research has time and again asserted that there is no known cause for autism. The National Autistic Society, in the US, states, emphatically, that “it (autism) is not due to emotional deprivation or the way a person has been brought up”. But people are often blamed if their children are diagnised with autism.
Dr Shilpa Rao, a paediatrician and autism specialist, says, “I meet lots of families where the daughter-in-law is blamed for giving birth to a child with autism.
Then they blame her career and its attendent stress for having affected the child, or that she hardly breastfed the baby, or that she is a cold mother who does not care for the baby... list is endless.” Dr Rao says that this blamegame has even ended marriages.
But such myths have existed for long. “In early 1970s, autism was considered to be caused by refrigerator moms who left their kids in daycare to work but this fact was proven wrong stating, if working moms were a cause for autism, than all kids who were daycare should be autistic not only few,” says Dr Rao. “There is very little understanding of autism and many educated families still blame mothers for their kids and the autism... an absolutely wrong belief.”
Mugdha Kalra, mother of a son who falls in the autism spectrum, says that no one overtly blamed her. “But questions that were asked would make you wonder in that direction,” she says. Mugdha writes about her parenting experience on a Wordpress blog, titled raisinganonconformist.
Geetha VM, a former advertising professional, now runs awareness campaigns on autism including the hugely successful Supporticon initiative. She says, laughing, that no one had the “courage” to blame her. “But yes, they would hint at it, saying you maybe you should have lived in a joint family, maybe you should not have worked before pregnancy, maybe you should have eaten healthier food during pregnancy and silly things like that.”
These ‘observations’ would initially get on her nerves. “I was a new parent and I was fighting my own battles on how to make my child better!” she says. But now she tries a different tack. “I just smile and nod my head at everyone who comes forward with such remarks because I have learnt that they are talking from ignorance and sometimes out of true concern. If the person appears to be sensible, I explain and try to make them understand, if not I just nod my head and move on.”
Often, as Geetha says, people talk from concern but there are better ways of being supportive. All parents unanimously say “NO” to sympathy. “By not showing sympathy or pity and not judging,” Mugdha elaborates. She says give time and engage with families with autistic children.