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“I still remember the doctor’s words: ‘Your child has cerebral palsy.’ That day, my world fell apart.” – Meera*

Meera isn’t alone in feeling her world fell apart after a neurodivergent diagnosis for her child. It’s an all-too-familiar reality for families that have to navigate the complexities of raising children with disabilities. 

In India, over 1.15 crore children live with developmental disabilities. This isn’t just a statistic; it represents countless families grappling with emotional, logistical, and societal barriers. In a country with increased stigma around mental health, understanding something as complex as neurodivergence is a challenge for both adults and children alike. And it all starts with the diagnosis. 

A diagnosis is more than just a medical confirmation. It comes with a label, and labels carry weight. They can shape how a child is seen, how they are treated, and even how they see themselves.

Like Meera, Rajiv* was also shocked when he learned about his child’s autism diagnosis in 2021. “I thought I’d be ready. But no matter how much you prepare, it’s always different when it’s your child.”

It’s not just the diagnosis. It’s the delivery that matters. Some are lucky. Some aren’t. In an ideal context, a diagnosis for any developmental disability or neurodivergence is often a process where the parents are an active part of the process, and the professional takes days or weeks of understanding the child through observation, interaction, and multiple interviews with the parents.

Doctors and clinical psychologists or psychiatrists are expected to arrive at a diagnosis after a long and careful process, which gives the parent more insight than what they already have about the problem and gives direction as well. Despite that, the sting of the label leaves its mark.

Priya* experienced the positive impact of a compassionate approach. “The doctor didn’t just give us the news, he sat with us and walked us through it. We left the appointment with some hope.”

In stark contrast, Meera’s experience was cold and impersonal.

“There was no empathy, no warmth. It was just a diagnosis and a referral to a specialist. I felt as though I had been abandoned in that room.”

This lack of empathy created a divide, making it difficult for Meera to seek further support. “After that experience, I didn’t feel comfortable reaching out for help. It felt like the system didn’t care about us. It was just about labels and papers.”

Their vastly different experiences highlight just how important it is for healthcare professionals to deliver diagnoses with compassion and understanding. In doing so, they foster collaboration and empower parents to face the challenges ahead.

Priya emphasizes, “I can’t emphasize enough how important it was for us to feel heard and not just treated as patients.”

Understanding and accepting neurodivergence

The spectrum of neurodivergence includes the more well-known ones like dyslexia, ADHD, and autism, as well as dyscalculia, OCD, Tourette’s Syndrome, and Down Syndrome, among others. In India, specific statistics on neurodivergent conditions beyond autism are hard to come by, illustrating systemic gaps in research and understanding. (Awasthi et. al., 2017).

For many parents, hearing the diagnosis is just the first shock. The second comes when they realize how little they understand what it really means.

Like Meera described, shock is one of the most typical first reactions. But it’s often beyond that. For many, this shock soon turns into grief—grief not for the child, but for the future they had imagined. The image of a child excelling in school, attending prom, and living independently may no longer align with their reality. Rajiv admits, “I mourned the idea of what I thought my child’s life would be. I wasn’t ready to let go of those expectations.”

But over time, he found acceptance. “I realized that my child would be amazing no matter what. We just had to redefine what success looked like.”

And beyond that, find ways to cope, for themselves and their child.

The fight for support no one tells you about

Given the lack of awareness, accessing support services can feel like navigating a frustrating maze even though there are government schemes and programs. India has government programs like the Niramaya Health Insurance Scheme, which provides up to ₹100,000 in coverage for children with autism, cerebral palsy, and multiple disabilities. Gyan Prabha is a scholarship scheme to support the educational pursuits for individuals with disabilities. But the reality? The paperwork is tedious, the process confusing, and families often give up before they receive help. This isn’t just about bureaucracy; it’s about the gap between promised support and real access.

Ramesh, a father of two children with special needs, laments, “We’re told that there are laws and programs available to us, but when we try to access them, we hit wall after wall. It’s a system that’s supposed to help, but instead, it’s just another layer of frustration.”

Beyond the complexity of bureaucracy, parents often feel they lack sufficient guidance on the therapies their child needs. For example, Applied Behavior Analysis (ABA), a form of behavioral therapy commonly used to teach new skills and reduce challenging behaviors through positive reinforcement, has been criticized for potentially crossing the line between intervention and abuse.

Speech therapy, which addresses communication challenges by improving speech, language comprehension, and social communication skills, poses dilemmas, particularly when children are required to use a non-native language like English. Additionally, there are variations in how speech, language, and communication can be addressed using different tools.

Sensory Integration Therapy helps children with sensory processing issues better navigate daily activities. But it has its critics. This criticism stems from its often isolated application, rather than being integrated into the child’s routine. The real challenge isn’t just a lack of guidance, but the contradictions within that guidance—conflicting research, inconsistent therapies, and shifting policies. Therefore, parents have to be equipped to create and build an individualized plan—not just for education, but for life.

They need to fine-tune strategies to suit what truly works for their child. This process involves a lot of trial and error, as what works for one child or family may not work for another. This is the real maze—not about finding a ready-made path but about creating one.

Navigating this maze is particularly tricky because there is no single “right” way. Ultimately, parents realize that no one is coming to rescue them. Instead, they must build their own version of Wonderland—one that works for them, their child, and their family—trusting their instincts and their journey along the way. Parents often find this strain overwhelming, sometimes too much to bear. 

This journey isn’t just about creating a pathway for their child—it’s about ensuring they don’t lose themselves in the process. When parents focus solely on their child, the weight of it all can take a toll. Without support, even the strongest marriages and family structures can begin to fracture.

“It was like we were drowning in responsibilities, and instead of pulling together, we drifted apart,” shares Ananya*, a mother of a child with multiple disabilities.

Ideally, the education system should offer the support that parents need. But in India, schools that are able to accommodate neurodivergent kids are few. Many schools reject children outright, saying, “We are not equipped.” Even when children gain admission, they don’t always receive the support they need. Special educators, speech therapists, and occupational therapists often work in silos, making care uncoordinated and ineffective. This is why parents lean on building their own support systems. In India, this often means extended family or a chosen family of those on the same journey, offering strength, guidance, and belonging.

The community that became family

There’s solace and strength in shared experiences. For Rajiv, community has been a “life-saver.” For example, the Autism Club in Kerala is a parent-led support and advocacy group in Ernakulam for families and individuals on the autism spectrum. Started by a small group of parents, the Club is a registered NGO that offers products such as ‘Ausome Bites,’ in its skill development center. Other community initiatives include calendars featuring paintings and poems by youngsters with autism. Finally, they shift from a deficit-based diagnostic journey they were thrust into toward creating a pathway of strength, empowerment, and possibility.

There are others like Action for Autism in Delhi and Nayi Disha in Hyderabad. These communities offer practical assistance, emotional sustenance, and a sense of belonging. Kanchan* shares, “I wouldn’t have made it through some of the hardest days without the friends I made through support groups. They get it. They don’t just sympathize, they understand what it’s like.”

For many parents, support groups don’t offer answers. But they offer something just as valuable: someone who understands. And that’s what these communities provide, not quick fixes, but quiet understanding. Amid the chaos, they find something unexpected: each other.

Here are some of the organizations that are making change at the grassroots levels

A love that fights back

And that’s the answer. Ultimately, the journey parents undertake is one of love. A love that doesn’t fit into conventional expectations but that is just as real, just as powerful, and just as beautiful. This love is transformative. It shapes how they see their children, how they approach the world, and how they advocate for change. It’s a shift from silence to action. Parents who’ve navigated the system with their children know how broken it can be, so they fight to change it. They demand access to better services, clearer policies, and an inclusive society where everyone truly belongs. 

Love isn’t about fixing a child to fit into society’s expectations. It’s about embracing them as they are, with all their unique traits, challenges, and strengths. About seeing their worth beyond the labels and acknowledging their potential.

Parents who face these challenges discover a new kind of love, one that isn’t confined to the idea of a perfect life but embraces the beauty in the imperfections. This love becomes their guiding light, helping them overcome every obstacle, no matter how large or small. A love that fights for a world where every child belongs.