My son was slipping away from me and I didn’t know how to help him
Nothing could prepare her for what would happen when one of her twins was diagnosed with autism
When my husband and I discovered we were having twins, it was one of the most exciting moments of our lives. Little did we know how challenging the journey would be.
One day, my son suddenly began banging his head and crying hysterically. We’d travelled to India, so we assumed he was exhausted or uncomfortable because of the hot weather, jetlag, or from meeting so many people. We eventually returned home, and he went back to daycare. There, the behaviour started again. He was triggered by seeing another child, even his own sister. If anyone tried to calm him, he’d pull their hair.
He’d wake up in the middle of the night, inconsolable and unmanageable. Eventually, we’d put him in his pram and one parent would take him out for a walk. Staying in one room became a challenge, as we had to prevent him from hurting himself when he saw his sister.
He also avoided eye contact and had difficulty with social interactions. Though his paediatrician said it could be just a phase, our research led us to the term autism for the first time.
Getting a diagnosis was a challenge. After waiting for months for an appointment, the doctor said that our son was a happy child, and too young to be diagnosed with autism. They suggested specialised support, but getting a slot was tough, so we didn’t know what kind of intervention he needed.
As a mother, it was frustrating to not have a definitive answer. I felt like we were running out of time.
We decided to go to India for a few months as it was getting difficult to handle both toddlers without any help. We visited temples and performed poojas — with love and care, my son eventually stopped banging his head. But then, he started running back and forth flapping his hands. Alarm bells went off in my head. When I discussed my fears with my relatives, they’d say he was physically active or that I was reading too much into it, and ask me to stay positive.
But my husband and I knew that something was wrong. Finally, his paediatrician in India told us we may have a child with autism.
Even before the diagnosis, trying to handle twins was mentally and emotionally challenging. Balancing the needs of my daughter and my son, and feeling like I was failing both. I had dreamt of watching them grow together. But my daughter could sing rhymes, tell colours, and even understand emotions, while my son was always in his own world, seemingly unable to connect with others. It felt like he was slipping away from me and I didn’t know how to help him.
Raising a child with autism has turned my world upside down. I had so many fears and doubts — it felt like I was walking in the dark, not knowing what to expect or how to help him.
Though my husband has been my greatest strength and support, he still has to work and make a living. Everyone says the mother is the biggest therapist (for autistic kids) and it creates immense pressure, leaving us overwhelmed and unsure if we’re doing enough. We abandon our careers and dreams to become therapists for our children, juggling their needs, household chores, and other responsibilities.
We’re expected to be superwomen and stretch ourselves thin to meet the needs of our families. But we get tired, physically, mentally, and emotionally. We need support, understanding, and resources from our communities, schools, and healthcare systems. I often wonder why there aren’t more initiatives to support families like ours?
We need to change the narrative and recognise that raising a child with autism is a collective effort. Mothers should not have to bear the weight of this responsibility alone.
*Name changed on request
Bookmark these resources if you’re raising a child with autism
Mom’s Belief: This social enterprise provides support to children with autism and other developmental delays with learning centres that provide occupational, speech, and behaviour therapies, a range of diagnostic and assessment services and special education programmes. They work closely with families to create customised intervention plans that address a child’s specific needs and challenges.
Trijog: It offers research-driven holistic care for children with developmental needs, and empowers parents with resources, training and ongoing mentoring.
Sethu: It caters to children with developmental, behavioural, emotional and learning difficulties, from birth to 19 years, also providing guidance to parents and other caregivers.
Umeed: Apart from providing specialised care for most developmental disabilities, they help build a cadre of trained professionals
and community workers who can prevent, diagnose, and manage developmental disabilities.
We CAN India: It employs the scientifically supported practice of Applied Behavior Analysis and helps kids overcome core deficits in the areas of communication, social interactions and acquiring life skills.
I Have Autism and I Like to Play Good Bad Tennis by author Debashis Paul is a book about the challenges and joys, small and big, of parenting a child with particular needs.
The Reason I Jump by Naoki Higashida is a memoir which takes us inside an autistic mind.
A World of Difference: The Ultimate Autism Handbook for Mindful Parenting acts as a ‘ready-to-reference’ handbook for parents struggling to cope with bringing up a child with autism, and who have little or no access to evidence-based approaches.