April is the Autism Acceptance Month. Even 20 years ago most of us would not have been aware of the condition unless we had someone in the family with autism. Many years of campaigning have now changed our knowledge about this “silent” condition. It is called a “silent” disability as it may not be immediately apparent in those who have them.
I was reminded of another kind of silence in my clinic a week back. Oishi, a 17-year-old girl, was sitting face to face with me, while her parents and her nine-year-old brother Arko were waiting outside in my clinic. She was fighting hard to hold back her tears, somewhat frozen and unable to speak. I sat silently, not really having the words to ease her pent-up pain of many years.
I have known the family for seven years. Her brother Arko was diagnosed to have autism by me when he was just about two years old. Since then, we have been in regular touch over the years. I had always known Arko had a sister, but that was all. I had never met her, and her parents did not mention her during our consultations.
This time it was different. They brought Arko for a routine follow-up visit but also made an appointment for me to see Oishi. “She is the best daughter one can have, but her behaviour has become terrible over the past six months,” her mother said. I asked her parents and Arko to wait outside, while I spoke with Oishi on her own.
When I asked Oishi how she was, it was only after a few minutes that she was able to compose herself and could articulate her thoughts. She described her journey as a sibling of a child with disability, from when he was diagnosed, her brother’s (legitimate) needs were prioritised. “I could not even attend sports day/ flag hoisting ceremonies in school because my parents had to take my brother somewhere or the other for therapy,” she said.
She described many years of silent tears, loneliness and self-doubt, as she could not talk about her brother with any of her friends. She felt incompetent to socialise and hang out with her peers, as she lacked exposure to “normal” activities which children/teenagers of her age do. Her parents, both anxious in nature, felt it would be much safer for them if she was kept mostly at home. The outside world, beyond school, can be unsafe. So, they discouraged all her requests to go out with her friends. Eventually, she stopped asking.
Her tears came in waves, and I sat helplessly. I did not stop her from crying. I felt it was needed. She was crying silently. She had taught herself to do that so that her parents did not become aware of her mental state and suffering.
“Why did you not say how you were feeling,” I asked. “It would have been selfish. My parents were doing everything needed to help my brother,” she said. I had no answer.
So, in this month of Autism Acceptance Month, it is not only autism that I want to talk about. I want to remind ourselves of the siblings whose brothers/sisters have any chronic and long-term conditions. They remain in the shadows and often the sun does not shine on them.
Mental healthof siblings
I tried to imagine what it would have felt like for Oishi for so many years to go through her journey. What made her so resilient that “she was the best daughter”? What made her so kind at such a young age that she put her brother’s needs above hers? She had no rancour about what had happened. She only had accumulated sadness on missing out on seven years of her life. What could we do now to make up for that? What do I tell her which will make her pain more bearable?
There is a lot of research on the mental health of siblings who are in such situations across the world. We know about the research, but we do know about them. Unfortunately, we do not even remember to ask about them. Jamie Davis Smith, writing in Washington Post, lists several of the hardships children like Oishi experience but are unable to share.
- Feeling they need to be perfect as they know how hard their parents work to ensure care for the other child in the family. Many feel they cannot make mistakes because that would add to their parents’ burden.
- Feeling like they cannot express their feelings, as was so evident for Oishi.
- Realising they have a “different” family and home.
Spending time together for everyone in the family requires more planning and often it is difficult to execute. Visiting a Puja pandal together as a family never happened for Oishi. Arko has sensory processing problems (it is a part of his condition), which made him very restless in crowds where loud noise was a feature. She said she could not draw a picture depicting her family in a Puja pandal even though that was the assigned task given to her by her teacher.
She found her aunt’s house a refuge, where she was not assigned tasks to look after her brother but felt guilty about escaping there. Asking for help from her mother, when she had difficulties with her peer group in school felt small, compared to what her mother had to do for Arko, who was struggling with his speech disorder. So, she never asked for help for what she felt were “small issues”.
Oishi, like other children in her situation, became exposed to intolerance early in her life. Her brother was mocked and bullied regularly. Her parents were not welcome in family ceremonies such as weddings and birthdays as Arko could have created problems if they attended. It was very lonely growing up. The bitter truth about prejudices and lack of acceptance for individuals with special needs was made obvious to her far too early in her life.
I sat quietly with Oishi for a while. She understood I had nothing much to say. Finally, when tears had dried up for both of us, I said what I felt about her. I said we will join forces and enable small changes in her life so that the world appears better. I said I knew she would grow up to be one of the kindest people I have ever had the privilege of talking to, and she would make this world a better place.
Dear readers, while we celebrate Autism Acceptance Month in April, let us also think about the siblings like Oishi who live in so many families around us. There are many Oishi’s in the world. We all know them. Let us break the silence around them and reach out.
Author is a senior consultant psychiatrist and co-founder of Mental Health Foundation (www.mhfkolkata.com). Find him on Facebook @Jai R Ram
