In Sushama Nagarkar’s Own Words — from JYNM: “The Case That Banned Autism Stem Cell ‘Cures’”

“It’s banned as a commercial practice, which is huge. It’s humongous — and it needs to be.”

— Sushama Nagarkar

I’m a school psychologist with a PhD in special education, and the founder of Yash Charitable Trust. In January 2026, India’s Supreme Court banned the commercial use of stem cell therapy as an autism cure — a ruling that came out of a Public Interest Litigation I led. It took roughly four years.

I worked as a school psychologist in the US for fifteen years, in Louisiana and then mid-Missouri, before returning to India in 2013. I’m also the parent of a neurodivergent adult daughter, Aarti — which means this case was never purely professional for me.

1. From a Hallway Conversation to the Supreme Court

At my trust, staff kept encountering parents in desperation who were selling jewelry, mortgaging homes, and taking loans to fund unproven stem cell cures for autism. After a doctors’ panel publicly warned against it with no effect, we connected with a pro bono legal firm who agreed the issue merited direct Supreme Court action rather than a state High Court filing. My trust became lead petitioner, later joined by a medical-ethics organization and a developmental pediatrician. The case moved through multiple judges over roughly four years, with rumors of bribability and even anonymous calls urging me to contact the CBI. My own board initially thought I was crazy to pursue it. My guiding philosophy: do what’s right, and leave the rest to the universe.

2. Why Almost No Parent Would Go Public

Despite losing large sums with no results, almost no parents were willing to speak out. When we made an awareness video about stem cell therapy’s lack of evidence, only one parent agreed to appear — and even he insisted on being silhouetted on camera, though he later signed the petition. I don’t fully understand the fear driving this silence. I just know it made the case harder to build, and it means the people most harmed by this practice are the ones least able to speak about it publicly.

3. What the Clinics Were Really Selling

Stem cell therapy for autism involves harvesting cells from muscle or fat tissue and reinjecting them over several sittings, with zero research evidence it helps. Crucially, clinics also bundle in legitimate therapies — occupational therapy, speech-language therapy, physiotherapy, behavior therapy — alongside the injections, so any improvement families attribute to stem cells is more plausibly coming from those other therapies. I call that a cover up. The Supreme Court’s ruling: stem cell therapy for autism may only be offered within clinical trials, at designated research institutions, free of charge, with parents clearly informed it’s experimental. Practicing clinics and doctors now face penalties and loss of license.

4. Grief First, Then Strengths, Then Self-Determination

India has traditionally operated on a medical model that treats disability as something to fix; the 2016 Rights of Persons with Disabilities Act instead embeds a social model — change the environment, and the person thrives. My advice to new parents: grieve fully first, it’s okay to cry, it’s okay to be sad. Then focus on strengths rather than deficits, consult qualified developmental pediatricians rather than fly-by-night operators, and teach self-determination early — giving children real, safe choices from a young age so they build genuine decision-making capacity as adults. Caregiver burnout is real too. Parents, especially mothers, need their own lives, and siblings of neurodivergent children carry their own quiet grief that deserves dedicated support.

Tools & Strategies

• Early intervention — starting support as soon as a developmental delay appears, regardless of a formal diagnosis.
• Self-determination practice — structured choices from early childhood, building lifelong decision-making capacity.
• Vetting professionals, not marketing — consulting licensed developmental pediatricians instead of unproven “cure” clinics.
• Guardianship and long-term planning — wills and adult-support programming for long-term independence.

We only live once. This universe is a beautiful place. Our community is a beautiful community. When we find purpose, we find meaning and we find value, and our children teach us to do that. Let’s just sit back and watch and listen — listen with our hearts.

Listen to the full episode: youtube.com/watch?v=CJ269MOZMdc

Topics covered: #Autism #StemCellBan #SupremeCourtIndia #DisabilityRights #EvidenceBasedCare #NeurodivergenceIndia