The shame and blame game

DR RADICA MAHASE

SHARLENE is 44-years-old and she is the mother of a six-year-old boy who was diagnosed with autism a couple years ago. She lives in a small village in a rural area and she works as a cashier in the local supermarket. Her husband is a tradesman and they also have a teenage daughter.

Sharlene and her husband took their son to the paediatrician after the teacher in his preschool suggested that something “might be wrong with him.” When their son was diagnosed with autism, it was the first time that they had ever heard the word and they knew absolutely nothing about it. Their daughter researched it and told them about it.

Sharlene said when her son was diagnosed she was scared because she did not know anything about autism but she was willing to learn because she just wanted to help her son. Her husband on the other hand was angry and ashamed.

“My husband was worried about what people would say when they find out about our son. When he told his parents they asked him if my son was retarded and if I was the reason why he was born like that, that maybe I did something wrong when I was pregnant.”

Another mom Asha is a 35-year-old lawyer. Her daughter was also diagnosed a couple of years ago at age three. Asha said that she was aware of autism and other disabilities and was able to identify the early signs and get her child diagnosed early. However, she was apprehensive when she had to tell her extended family. According to Asha, “My daughter is the light of my life. I hired someone to work with her at home and I am making sure that she gets all the help that she needs. I don’t take her out in public because I feel badly when people stare at her and at us. I feel like people are judging me.”

Sharlene and Asha might be from different geographic areas and socio-economic background but the one thing that is common in both their cases, is the shame and blame they are faced with as parents of a child with special needs. Many parents, especially mothers, blame themselves for their child’s development.

Questions of what they did wrong, what they could have done better, what they did not do, are all justified in their situation. The problem is when the blame comes from others, whether it’s the extended family or society, when parents are made to feel that they are the reason why the child has special needs.

The shame and blame game is the result of society’s dictates and expectations. The society that we live in dictates that a child is supposed to develop at a certain rate and accomplish specific, non-negotiable milestones. Anyone who deviates from these “norms” are viewed differently and placed within a specific definition. An individual can only be different once that difference can be glorified –it’s okay to have autism once the person excels at music or art or is a “genius” in some way; but it’s not okay to have autism and be low functioning.

We can help parents, siblings and relatives to deal with the shame and blame issues when there is a support system in place when a child is diagnosed. As soon as a diagnosis is made, parents and the entire family, need to be given counselling to help them understand and accept that their child is going to have a different life from what society dictates. Additionally, we need to develop some kind of active support system for parents and siblings. These must go beyond the sporadic attempts made by NGOs and religious organisations – there needs to be a regular support system run by qualified and experienced people within the public healthcare system that would give tangible assistance to families of those with special needs.

Parents and siblings will be able to cope better when there are activities for the entire family, places where they can spend time with their loved ones with special needs and where they are not judged and made to feel ashamed. Of course, at the basis of all this is the strong need to change society’s perception and expectations and that will only come with persistent efforts at education, integration and concerted focus on younger generations.

Dr Radica Mahase

Founder/Director, Support Autism T&T