Cultural beliefs and practices affect when and whether families seek care, their understanding of disorders, their beliefs about causes, and their choice of treatment procedures. In today’s autism awareness poster, I am touching upon the issues.
In India, the birth of a child is seen as a gift from God. Disability is seen as a tragedy, in the premise that it is not possible to be happy or enjoy a good quality of life. Traditional parenting practices are followed with most of the support comes from within the family.
Majority of people in India believes in the concepts of Karma, God’s will, fate or destiny, as the important determinants of many events in life, including illness and suffering. This leads to the parents of children with disabilities considering life to be of sacrifice and adjustment for themselves, instead of focussing on rehabilitation for the child.
Raising a child with autism puts tremendous stress on the parents, other family members and caregivers. In addition to increased responsibility, social stigma contributes to this. The stress of caring for a child with autism can affect the psychological and emotional wellbeing of parents. Factors that contribute to increased stress in parents of children with autism include the child’s behavioural problems, lack of access to appropriate services, financial constraints and societal attitudes towards disability.
To cope with these challenges, parents device their own ways including accommodation or acceptance of a biological basis for autism, social withdrawal, reorganising life and relationships, empowerment, seeking social support, changing expectations, and turning to spiritual and religious beliefs. The socio-cultural diversity in India vastly influences the way parents cope with the situation.
In joint family setups, extended family members, especially grandparents provide the first line of support. The joint family system provides prop that helps parents in caring for the child with special needs, and managing other schedules. As we are staying in joint family, Pratibha got love and care in abundance, from grandparents and extended family members. In nuclear families, or in families with lack of a support system, one parent (usually the mother) often compromises on professional aspirations to take care the child. Some parents seem to seek consolation from the thought that autism in the child was due to past “karma”, and so the child was destined to be born with it. Parents of one of the families with autistic child, was telling me that no therapies will work if the child is a result of past karma, and they were resorting more to prayers and poojas rather than proven intervention approaches. There are many parents who turn towards religious beliefs and perceive prayers as a powerful tool to tackle the issue.
Parents who are unable to cope with the stress of dealing with a child with autism, often have marital and family conflicts, and are prone to anxiety and depression. I have seen couple of cases where mother is forced to look after the autistic children (unfortunately, two of their children are on autism spectrum) as a single parent. The husband believed that the children became autistic because of mother and divorced. Parents who manage to cope up think of strategies for creating a loving environment for their child and families despite the adverse situations, financial constraints and limited services.
The biggest difficulty parents and families face in India is the social stigma from the community around. We have faced it during our stay in Chennai. Situation is different and is favourable in Mumbai. As a result of social stigma, many parents stop going for social gatherings and events. Society’s obsession for ‘well-behaved children’, puts additional pressure on parents. There are many cases, where matrimony for siblings of persons with autism getting difficult.
Prevalence of autism increases year on year. But attitude changes in society is happening at much slower pace. This leads to tremendous emotional imbalances in society and manifests as social stigma. I hope the focussed campaigns for awareness by activists, parents and professionals working in this space should improve the situation, else it is going to be a huge injustice to the diversity that nature has provided us with.
No comments:
Post a Comment