Parents of children with Autism Spectrum Disorder (ASD) are not strangers to remarks such as, “He just needs to learn better manners”. These comments, though often well-meant, leave the parent even more worried.
Hajarabi P.S. of Thrissur, Kerala, experienced this three decades ago, as she struggled to understand her son, Naji, who had speech and behavioural deficiency.
Seeking the best therapy for her child, she went to the All India Institute of Speech and Hearing in Mysuru. There, she met speech-language pathologist Jeny Philip, who began working with him in Malayalam. It was the first such endeavour for the therapist.
Today, Naji is 44. He has a bachelor’s degree in English, is a piano graduate from Trinity College London and runs marathons. His life is a reminder of the importance of timely intervention and guidance for an autistic child.
ASD is a lifelong neurodevelopmental condition that affects the way a person communicates and perceives the world. It is not an illness, rather a disorder, and is called a spectrum because symptoms vary widely. The signs are often difficult to recognise and can be mistaken for sensory or developmental problems. For instance, children who recoil from loud noise might be seen as timid or anxious, even when such behaviour reflects sensory overload.
“I entered the field of speech therapy because one of my cousins’ children would not talk,” said Philip. “It was wrongly identified as a hearing disability before being diagnosed as ASD.”
Autistic children can be verbal or non-verbal, with the latter communicating through different mediums, including sign language, keyboard typing and the Picture Exchange Communication System (PECS). The goal of speech therapy is to facilitate such effective communication, and not speech alone.
As Philip says, early intervention is also key because neuroplasticity enables children to learn and train their brains more easily than adults.
For many parents, however, understanding ASD extends beyond therapy sessions and clinical interventions. Raising a neurodivergent child can often be an isolating experience, particularly in places where misconceptions about autism persist. Feelings of confusion, guilt and uncertainty are common among parents, many of whom struggle to find people who can relate to their experiences.
Said a young mother: “I am often confused because I don’t know whether I am doing the best thing for my daughter.” Her two-year-old, Aisha, is currently undergoing assessment for ASD.
Understanding the plight of such families, Hajarabi, who was trained in special education, began helping them along with Dr C.P. Aboobacker, a retired civil surgeon.
In 2023, she approached Philip with an unusual request. Could she start a WhatsApp group to guide a few families who could not afford regular therapy? Philip agreed. The group, now called Brain Train, has over 600 mothers who seek guidance on concerns ranging from delayed speech to sensory issues.
“My eight-year-old granddaughter cannot sit still for long. After joining the group, we met other families facing similar challenges. We understand her better now,” said a grandmother at a Brain Train get-together in Kottayam.
What began as a support group has become a community where parents receive professional advice and learn from shared experiences.
