Autism caregivers battle stigma, stress, lack of support amid social pressures

Padmavati Prabhu

Panaji: Mothers, who are mostly the primary caregivers for children with autism, often face intense social stigma, chronic mental health challenges like anxiety and stress, and a significant lack of spousal support, among others.

A mother, who is constantly blamed for her child’s developmental delay, said, “Every day, my mother-in-law taunts me, saying that if I had taken adequate rest during pregnancy, my child would have been ‘normal.’ I know this is not the cause of his condition, but I have stopped trying to explain myself. It is deeply frustrating to be held responsible for something beyond my control.”

Another mother, whose autistic child has been advised speech therapy by the doctor, said, “I understand how important it is. But my husband refuses to acknowledge our child’s difficulties. He believes our child will improve on his own over time and does not allow me to take him for therapy.”

Sharing her experience, another mother pointed out to her autistic child being compared by another mother in a sarcastic manner to her typically developing child.

“I felt deeply hurt but chose to remain silent, telling myself that reacting would not make me any different from her,” she said.

Mamta Verma, a psychologist at Sangath Goa, said that parents caring for children with autism in Goa face numerous emotional, social, and systemic challenges.

“The demands of caregiving, along with numerous responsibilities, lead to stress, anxiety, and isolation, especially in the early years post-diagnosis,” she said.

Though, she said, that she has seen a positive shift in public perception, with more families seeking support sooner over the decade in mental health and autism care, gaps in awareness and persistent stigma remain, with many parents facing unsolicited advice that hinder help-seeking and elevate their emotional struggles.

“Additionally, obtaining a diagnosis can be a long, confusing, and financially draining process. A critical issue is limited multidisciplinary, evidence-based services, making it difficult for families to access consistent therapy, qualified professionals, and inclusive educational options,” she pointed out.

To overcome the challenges, Dr Anup Netravalkar, Senior Programme Coordinator at Sangath Goa said that early identification and intervention are crucial, as timely support can significantly improve developmental outcomes.

“Creating strong support networks such as parent groups and professionals can help reduce feelings of isolation and emotional tides. Promoting inclusive education and raising community awareness are equally important, as this can foster acceptance and reduce stigma, enabling children to engage more actively in society.”

He said that parents can benefit from training and counselling, which empower them to support their child’s communication, manage behaviour and daily routines more effectively at home.