What The Sibling Of An Autistic Individual Goes Through
I watched them interacting at the dining table. He asked for ‘sambar’ and handed his bowl to her to serve some. She asked him if he wanted more dosa. When he answered in the affirmative, she shared the crispiest part of her dosa with him.
She knew he didn’t like soft dosas.
Later as her friends visited to study and chant, he also sat with them as they chanted.
As I glanced at him, he had a content look on his face and was comfortable to hang with her friends.
These scenes are from my daily family life.
Both my children (Mohit and Tanya) are now adults.
Mohit is autistic.
It gives me immense peace to see them at ease with each other.
This wasn’t how it always was.
Flashback: 25 years ago
We traveled to the US every year to find a ‘cure’ for Mohit.
Those trips were filled with intense work with Mohit, visiting renowned therapy centers and doctors. Our aim in life was to make him ‘unautistic.’
Tanya tagged along with us. We tried to entertain her while Mohit remained the center of our attention.
Since Mohit was on a GF/ CF diet, Anil (my husband) would try to sneak in chocolate pudding and candy for Tanya, when Mohit was doing something else.
Flashback : 15 years ago
Tanya started to resist happenings at home actively.
She would not understand his outbursts and aggression- sometimes directed at her.
She appeared to be an innocent bystander.
Being highly sensitive, she absorbed every incident.
Having an autistic child is tough. It affects the entire family.
In this journey of securing best services for the autistic child, the needs of other family members may sometimes get side lined.
Tanya, was only 5 months when Mohit was diagnosed. She had my undivided attention for the first 5 months of her life only.
After all, she was ‘normal.’ She didn’t need me like Mohit did.
I didn’t realize what a blunder I was committing. I didn’t know I would regret it later in life.
Many years later, as an adult, she commented, “I felt invisible. I felt like I didn’t exist.
For you, it was only about Mohit.”
You are dear to us. You are wanted. You are loved.
I know how embarrassed you feel around your friends when they watch your brother’s odd behaviors and hand movements.
You catch that question in their eyes, even if they don’t voice it.
“Why is he doing that? It’s so weird.”
Sometimes you feel intense jealousy when your parents are so focused on your autistic sibling.
The endless talk about therapies and their plans for your brother or sister the next day.
What about you? How come they don’t talk about you the way they talk about ‘them’?
You try so hard to play with your sister. But she’s not interested. She likes to line up toys, but gets mad at you when you try to teach her something new.
You’re lonely. Why can’t she play with you, like other sisters?
Your brother pinched you. It was painful.
While your parents were concerned about you, they were more concerned about what ‘triggered’ your brother.
You cried yourself to sleep that night.
You love your parents dearly. But they look sad, at times.
Why can’t you all go on a carefree holiday like other families?
Your sister is on a Gluten Free diet, that’s the main topic of discussion before deciding the restaurant to visit.
What’s going to happen in the future, when your parents are no longer around?
How will you take care of your brother? Though your parents have assured you they will take care of all the finances and your brother will never be your responsibility.
But you still question, “How can it not be my responsibility? I love him.”
Dear Sibling, I see you. I hear you. You are wonderful. You are a blessing in your family’s life.
It may seem like your parents only think about your autistic brother or sister. Trust me, they think about you and they love you immensely.
You light up their lives.
Be You. Be Happy.
Kamini Lakhani is the founder and director of SAI Connections. She has been providing services in the field of autism for more than 25 years and is the authorized director of Professional Training for RDI in India and the Middle East. She is also the mother of a young adult with autism.