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Journalism of Courage
Syed Hyder Ali, 20, is a self-taught musician from Bengaluru with an extraordinary gift—he can memorise lyrics in multiple languages, sing verses from the Quran pitch-perfect and even run his own YouTube channel. He cleans leafy vegetables at one go in a manner that even his mother cannot emulate and manages household tasks independently. Better than most boys his age. And he does it from his little perch in a room, a quiet achiever under the shadow of his illustrious grandfather and cricketer, Syed Kirmani. As a grandson, he is just a different genius.
What many wouldn’t guess is that Hyder lives with autism—a neurodevelopmental disorder marked by restrictive, repetitive behaviours and difficulties in communication. His mother, Nishath Kirmani Ali, recognized the early signs — speech delays, lack of social interaction and hyper-anxiety on flights. Widowed early, she became Hyder’s sole caregiver and strongest advocate, even training as a therapist to better support him. “I did not have to teach Hyder life skills. It is important not to focus on what an autistic child cannot do and instead focus on honing their existing potential. Of course, early intervention helps,” she says.
Through the Autism Society of India, Ali now guides other parents, sharing lessons from her journey. She also stays up-to-date on autism research, which remains inconclusive despite decades of study. “Scientists continue to investigate potential links to genetics, environmental toxins, maternal diabetes and hypertension, even exposure to toxins and air pollution,” she says. That’s why she remains sceptical of US Health Secretary Robert F. Kennedy’s claim that new research will pinpoint the cause of autism by September. Kennedy controversially blamed environmental factors and thimerosal, a preservative, in vaccines as triggers of this condition—claims widely rejected by scientific bodies and studies. Kennedy also said the condition might be preventable. Yet autism is not another disease.
THE MULTI-FACTORIAL MAZE
Ali is not alone in her scepticism. Subject experts say pin-pointing a cause may not be possible at all. “Unlike infectious diseases, autism doesn’t have one clear cause,” says Dr John Vijay Sagar Kommu, head of child and adolescent psychiatry at the National Institute of Mental Health and Neurosciences (NIMHANS), Bengaluru. “Now, people are also studying the link between air pollution and autism,” he says. Dr Shefali Gulati, who leads the child neurology division at AIIMS, echoes his observation, saying, “Researchers have not found a single causative factor in 80 years since the first cases of autism were detected.” Her research explores various factors—such as paternal age and stress, gluten and casein-free diets and gut microbiome differences between autistic children and their siblings. “We compared the gut flora of autistic children with their siblings and found it to be different. This should not be the case because siblings usually consume the same type of foods and live in a similar environment,” says Dr Gulati.
One study found autistic children had higher levels of heavy metals like lead, arsenic and cadmium in their systems.
THE ROOTS OF A FAMILY TREE
Family history also plays a role. According to Dr Gulati, families with one autistic child face a 4–7% chance of having another, which rises to 25–35% if two children are affected. Despite this, Ali encourages parents not to fear expanding their families. After remarrying and having more children, she noticed Hyder’s communication improving. He began speaking through his half-brother Hamza—asking questions and making requests indirectly, a huge milestone in his development. He now also dotes on his young sister Hiba. “If he wanted to have his favourite KFC chicken, he would say, ‘Hamza do you want to eat chicken?’ If he wanted to watch cartoons, he would say, Hamza ‘Do you want to watch Tom and Jerry?’ Now, with my two-and-a-half year old daughter Hiba, he has almost a fatherly relation,” says Ali.
AUTISM NEEDS A NEW LANGUAGE
Hyder helps around the house, manages personal hygiene and navigates social situations better—thanks largely to Ali’s structured support. She uses visual schedules and cues to prepare him for events and changes. If Hyder is meeting someone new, she shows him their photo and shares their name in advance. This predictability helps him feel secure. “Sudden changes can be tough for autistic people. On the day Hyder was to meet his grandparents, I would show him their pictures. If he was to meet anyone new, I would show him their photograph beforehand, I would tell him their name,” says Ali.
She also emphasizes minimizing sensory overload—limiting noise, light, and other distractions—and giving autistic children time to process information without pressure. Physical play and gentle encouragement can help reduce anxiety and support communication.
Autism rates in India are rising but so is awareness. The first known cases in India appeared in the 1960s and 70s, but public understanding has grown significantly in recent decades. A 2011 AIIMS study found autism in one in 89 children; a 2018 study suggested one in 68. The World Health Organisation (WHO) estimates the global prevalence at about one in 100.
Is the rise in cases due to better diagnosis or an actual increase? Experts aren’t sure. “We still don’t have a clear picture,” says Dr Kommu, noting that autism often coexists with other conditions. Around 15–20% of autistic children also have epilepsy, and about 40% live with Attention Deficit Hyperactivity Disorder (ADHD). Intellectual abilities vary widely—from below average to exceptionally gifted.
Among those gifted is Hyder, a young man who challenges perceptions of what it means to live with autism. With the right support, structure, and encouragement, he’s blossomed—not in spite of his autism, but through it. As his story shows, the key isn’t in changing autistic individuals to fit the world, but in reshaping the world to understand and support them.
