“Remapping the World of Autism”
Roy Richard Grinker
AnthroNotes, Fall 2006, 27:3
In this article, Grinker describes how autism is dealt with in India and Hindu culture. In India, most autistic children are not diagnosed specifically with autism. Rather they are given a generic diagnosis of mentally retarded (MR) or paagol, the Hindi word for mad. This is slowly changing, but the traditions of such a richly tradition driven culture such as India's, make that progress seem infinitesimally slow at times. And an autistic child, at least the boys (which is better than 3/4's of all autistic people), are often a major source of conflict with those traditions.
A consistent theme through the article, is that autism often causes familial conflicts that are serious enough to break up families. There is a great deal of blame thrown around, often couched in terms of something that one or both parents must have done to anger the gods. Sometimes that blame is extended to the child's grandparents, who in Indian culture bear no small responsibility for the spiritual and by extension of that, the physical well being of the families of their children. Divorces are very common in the families Grinker describes in this article as well.
An autistic child also interferes with the normal process of the mother pushing her child away at about age five, into the fathers world and that of the extended family. In India, rather than
children developing their individuality, it is important for them to develop their familial identity first and foremost, with personal development coming behind. The extended family therefore often takes great exception when the mother of an autistic child refuses to send him (or her) to be embraced by the influence of the rest of the family. Or worse, the extended family simply refuses to deal with the autistic child. Whichever direction it goes, this is never very good for familial relationships, relationships that form the cornerstone of Indian society – though this too is slowly changing across Indian society.
Though the families described in the article have dealt with their child's autism in strikingly different ways, there is a great deal of similarity. And those similarities are not unique to India and Indian culture. Because while the motivations or the names of the gods may change, the Indian parents of autistic children experience is much the same as it is here in the United States.
Families in both India and the U.S. face many of the very same challenges, something I suspect is the case in many cultures. Caring for and raising a child with special needs takes a great deal of
special care – care that is going to be required for that child, no matter what culture is being discussed. About the only difference that might be found, is in cultures that may believe that it is
imperative for family and friends to make a significant contribution to the care of the child and to ensure that the parents engage in a reasonable level of self-care, thus making it possible for them to provide quality care for their child. But I again suspect that rather than being a cultural difference, most every culture has families that get this kind of help from friends and family, but like the cultures of India and the U.S., such families are also probably a rarity.
Something that really hit home for me, was the notion that even in such a tradition driven culture as India's, there are parents of special needs children who fall into a familiar pattern – becoming rather Bohemian as one mother described her and her late husband. This is another very common theme amongst the American families of children with special needs. Some of us may have started out rather “different,” but there are plenty of parents who naturally learn to live life to a very different beat, as they learn to accept, embrace and love their child for everything they are. I suspect that it is virtually impossible for most parents to even try to fit in and accept their child's neurological differences – there just isn't enough energy in any one person to make it all come together. But there is also a great deal of joy to be found in being part of a family that while different, is also honest and open about who they are.