In the last decade-and-a-half, in India, as the spotlight has been turned on the needs of the child, the issue of parenting has assumed significant dimensions. The idea of sharing experiences and information relating to the many aspects of child development and nurture, has gained ground.
It is this search for community that has brought together parents with autistic children under the aegis of Action For Autism (AFA), headquartered in New Delhi. Pitara reproduces an article from AFA’s journal ‘Autism Network’, about the need to create a support group among parents.For many of us who have a family member with autism, the only families that we are truly comfortable with are other families like us. These are families to whom we do not have to apologise for our child’s behaviour. These are families who don’t look askance when our child spins 79 times in one hour, or says, “say good boy” “say good boy” right through a visit. And, these are often the only families with whom we can sometimes share the humour in our life situations. Yet, because of the enormous distances in Delhi or due to the frenetic pace of life, of all the hundreds of families in touch with Action For Autism (AFA), only a very few were interacting with each other.
Deepak and Roma Verma decided to do something about this. And, as result of their initiative, we now have a recharged group of parents. Three enthusiastic meetings have taken place already, of which the last was a super picnic at Lodi Gardens.
There are various expectations from the meetings. The prime one of course, to quote a member of the group, is “to create a close community of families of autistic children, parents and children working together, enjoying picnic and other outings at many places in India, to develop a sense of an extended family amongst ourselves.”
There are many other concerns. “We read books, learn about various therapies but when and how do we go about (implementing) it.” Which gets answered with “Interaction with the other families and learn from each other” “meet and discuss specific problems, (receive) advise and guidance”. “Being a working mother, my prime concern is having a pool of therapists (can be young graduates/diploma holders) who can help in spending an hour or so on a daily basis with the child”. “Build area-wise groups.” “Concretise plans for (the) National Centre,” “carrying on many activities for autistic children” “where all local/state centres can be associated with us.”
But the most important one is as one parent put it, “get to know each other – children and parents and siblings – become a resource for each other.” Many of the parents of younger autistic children who also have regular kids feel, “Oh my child does not need anyone. He has his sister (or brother).” But, as those with grown up children know, siblings are not there forever. Siblings grow up, have their studies, their careers, their lives. Even though they love their autistic sibling and want to do things with them, they don’t have the time. So when our kids are older, they are lonely and alone.
But, if we learn to be a resource for each other, then the child with autism can go to spend the day with a friend who he is comfortable with, and more importantly, whose family is comfortable with him.
Siblings of our autistic children too need this networking. Very often, they feel confused about having a brother or sister with autism. And they need to meet other young people like themselves who too have an autistic sibling. With them they can share their confusions, frustrations and anger and know that there are others like them out there.
All this has to start with families just getting to know each other. And from building such ties, such sharing and holding, families can develop and build on dreams of adult living centres, vocational centres and other services for our children with autism, for which parents ultimately have to take the initiative.