Autism Acceptance Month: Care, from beyond the spectrum

The first time it really hit me that I was raising an autistic child was not at diagnosis. Not when he wasn’t speaking, not during meltdowns, not even when a mainstream school said it couldn’t support him. It was at a workshop where someone said, almost casually, that you would have to earn for two lifetimes. One for yourself, and another for when you are no longer around and your child continues to live, supported by what you have left behind.

Autism life planning, at its core, is financial planning. It forces families to think in decades, not milestones. It is about how much money will be needed over a lifetime, and how early that planning must begin.

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India is not prepared for the scale of this reality. The 2011 census did not account for autism. It was only in 2016 that autism was formally recognised under Rights of Persons with Disabilities (RPwD) Act 2016. Even today, diagnosis is uneven and often people won’t share because of stigma.

Estimates suggest autism affects roughly 1 in 100 children in India, though many professionals believe the number is as high as 1 in 50. It’s a large and growing demographic. And, yet, while systems exist for early intervention, they taper off sharply after the age of 18.

Before 15, the financial burden is substantial. School fees, therapy costs, medical consultations, medication, caregiver support, and often the loss of one parent’s income. Even by conservative estimates, it can be more than ₹25k-30k a month.

Autism is a lifelong condition. While some individuals move towards greater independence, employment and structured engagement opportunities remain limited, which means financial dependence, in some form, continues. Employment cannot be the only outcome we plan for. Not every autistic adult will enter the workforce. Many require structured engagement and supported living. India lacks enough vocational centres, sheltered workshops and day programmes, leaving families to bridge both care and financial gaps.

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Beyond schooling, there is no defined pathway. No structured ecosystem for adult life. This is not just a care gap. It’s a missing economic category. Assisted living options are few, expensive and uneven in quality. Monthly costs range anywhere between ₹45,000 and ₹1.5 lakh. Most are privately run or charitable, with minimal state participation.

Even the best-run facilities operate at a small scale, often supporting 20-30 residents at a time. Given the long-term nature of residency, turnover is low and access remains limited. Also, how many families can afford to pay that kind of money every month, long after they’re gone?

Operators face structural challenges: lack of viable financial models, high staff attrition, limited trained caregivers, no clear succession planning and regulatory ambiguity. While RPwD Act exists, its execution remains fragmented and not tailored to specific needs of neurodivergent adults.

What is missing is an ecosystem approach. This requires financial instruments, regulatory frameworks and infrastructure to move together. There are no long-term care insurance products designed for lifelong developmental conditions. No annuity-linked care models. No investment-grade assisted-living frameworks. No standardisation of care or costing. We have financial products for education, housing and retirement. But not for lifelong assisted care.

For individuals with autism, insurance is rarely straightforward. Even claims for common ailments can be refused, with autism cited as the underlying reason.

For families, this means planning must begin early and remain continuous. Building a corpus, accounting for inflation and rising care costs, becomes essential. Wills, trusts, disability certification and legal guardianship post 18 yrs are no longer optional considerations. They are foundational.

But the irony is, parents are always so overwhelmed in the present that long- term financial planning gets pushed aside until it becomes an urgent, and often daunting, reality later.

At a systemic level, this can’t remain a private burden. Assisted living and vocational ecosystems need to be recognised as formal sectors. PPPs, CSR capital and parent-led community models can play a role, but they require policy support, regulatory clarity and financial innovation.

Every parent in this journey confronts the same thought: not about today but about continuity. Because, for families, the question always is: what after us?