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How to care for a child with autism: A practical guide
Summary
Instead of treating autism symptomatically, parents and caregivers of children with autism need to adopt an approach that's rooted in meaningful connections and communication
“Doctor, my child was diagnosed with autism at two-and-a-half years. I moved from a small town to a metropolis for therapies not available in my town. I did everything advised: he recites rhymes, writes words, and attends school with a shadow teacher. But I can never send him to school without the shadow teacher or leave him with relatives. He now has a routine he refuses to change—screaming at the smallest disruption. Despite being ‘better’ at numbers and alphabets, I struggle to teach him social behavior, and the embarrassment is unending. People call us names, and no one invites us over. What went wrong?"
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This cry for help from a client reflects the journey of countless parents navigating autism in the modern world. Autism is more common than imagined, affecting an estimated 2.5% of the population worldwide. Yet, despite awareness campaigns and advanced therapies, many families are left wondering why interventions fall short of transforming their child’s life.
The issue lies in our fundamental understanding—or misunderstanding—of autism. Instead of addressing its root cause, we have often treated autism symptomatically, targeting speech, academics, or specific behaviors. What we need is a paradigm shift—a fresh approach rooted in the science of human engagement.
Understanding autism beyond symptoms
Autism is not merely the presence of certain behaviors like speech delay, repetitive actions, or sensitivity to sensory input. It is, more importantly, the absence of normal development in social behavior and communication. The symptoms that families focus on—like speech delays or echolalia (repetition of words said by someone else) —are consequences of the underlying lack of human engagement.
Children with autism are predisposed to excessive object engagement (fascination with objects) and reduced human engagement (social interaction). This is evident in early symptoms, such as a lack of eye contact, absence of social smiles, and failure to respond to their name. These deficits disrupt the natural sequence of social and communication development, which includes non-verbal gestures, verbal communication, and eventually, academic skills like reading and writing.
The role of community: It takes a village
Raising a child with autism is not just the responsibility of parents—it requires a supportive community. From empathetic relatives to patient shopkeepers, kind neighbors and understanding teachers, every interaction helps the child navigate the diversity of human behavior.
Unfortunately, the stigma surrounding autism often isolates families. Misguided societal perceptions and a lack of inclusive spaces prevent children from participating in everyday social environments. This needs to change. People in the community have to change this attitude and engage with these children. Communities must foster acceptance and create opportunities for children to engage, learn, and grow.
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Challenges in current interventions
While autism interventions have advanced, many are limited by a symptomatic approach. Standardized therapies often lack individualization and fail to monitor long-term outcomes. Sadly, many services in India offer routine, patterned, repetitive activities in the name of interventions. In the absence of licensing or monitoring, these have sprung up all over the country. Hyping the enigma around autism and calling it an incurable condition that needs these therapies only ensures an uninterrupted and endless business without any accountability or answerability. Moreover, the proliferation of unproven treatments—such as stem cell transplants or hyperbaric oxygen therapy—misguides families desperate for a solution.
A fresh approach to parenting autism must move beyond these pitfalls. It requires a commitment to evidence-based, outcome-oriented practices that address the core of autism: human engagement, and recognise the most vital role of parents, family and community more than doctors or therapists.
A practical roadmap
Instead of aiming for immediate improvements in the child's academics or speech, I believe that there's a need for an approach that fosters social behaviours and non-verbal communication as the foundation for further development of a child with autism. Here's a step-by-step roadmap that can help:
1.Start with engagement: The first step is fostering meaningful interactions between the child and their caregivers. For example, encouraging the child to make eye contact or respond to a caregiver’s gestures builds the scaffolding for future communication.
2. Work on non-verbal communication: Before speech emerges, non-verbal cues like pointing, nodding, or showing shared attention must be established. These are critical building blocks that prepare the child for verbal communication.
3.Avoid overloading academics: Focusing on rote learning—such as reciting rhymes or memorizing alphabets—can exacerbate echolalia and repetitive behaviors. Instead, parents are guided to integrate learning into natural interactions, like teaching counting through games or songs.
4. Empower parents to work with the child at home: Parents must take care to integrate learning into the child's daily routines, ensuring consistent and dynamic intervention at home.
5.Monitor progress dynamically: Track outcomes every month and adjust therapy plans based on the child’s evolving milestones. This will ensure that interventions remain personalized and effective.
Contrary to popular belief, autism is not an enigma. With early and correct intervention, children can make tremendous progress. It may not be an easy journey, but it is one filled with possibility. Parents, professionals, and society must work together to redefine what it means to support a child with autism.
Dr. Samir H Dalwai is a developmental behavioural paediatrician and founder of New Horizons Child Development Centre, Mumbai.
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