On World Autism Day, lets pause to think about “mother” of the child. There is always one person who takes responsibility of the child with autism and in India almost always that person is child’s mother.
As soon as diagnosis of Autism is made she gives up most of her personal freedom, leisure time and career to give “best possible chance” to her child. I see them in clinic waiting rooms looking after kids, trying to implement communication, behavior and activity exercises as taught by the therapist.
There is no respite. Many times, they simply close their eyes and catch a nap when child enters therapy room with the therapist. I doubt if they ever manage to pay off the sleep debt they accumulate on an ongoing basis.
In consulting sessions, I have never heard a mother grumbling about the effort she has to put in. Their anger, frustration and sadness if often about the loneliness and thanklessness of the work.
Most of them, even after years of reading, have not absolved themselves of the guilt of having produced a child with difficulties. “Why this? Why me?” are the questions that they have to struggle to keep away.
Socialization almost disappears as it is better to stay away from insensitive relatives and impatient friends. Most try to find friends in other moms they meet at therapy centers.
As a psychiatrist, this isolation and selective socialization with other parents in similar difficulty is what I dread the most. Almost all discussions in these groups are about “autism”. Various therapies are discussed, a lot of them totally unscientific, some harmful.
Friends and relatives keep adding suggestions to the ever growing list of interventions and mother runs after all the leads “just in case”!
Effect of all this on mothers’ mental health is well documented. More than half develop chronic depression. Never get any help for fear of further stigmatization.
And I wont even get started on what all this does to their marriage….
On this world autism day lets celebrate and bow to the spirit of motherhood that carries this herculean burden with a smile.
#India