It is high time that we built a more inclusive society where individuals with autism and their families can thrive, and where no parent has to sacrifice their ability to work to provide care.
Published Apr 02, 2025 | 7:00 AM ⚊ Updated Apr 02, 2025 | 4:44 PM
Parents of children with autism often face social isolation and a lack of support from their communities. (Creative Commons)
Synopsis: Autism Day is observed the world over on 2 April. Despite several campaigns to spread awareness on autism and the challenges families face, little has been done to ameliorate their difficulties. A lack of data on the economic burden on Indian families with autistic children further complicates the matter.
As the world observes World Autism Day on 2 April, this year’s theme, “Advancing Neurodiversity and the UN Sustainable Development Goals (SDGs)”, highlights the need for inclusivity and support for individuals with autism and their families.
However, behind the celebrations and awareness campaigns lies a harsh reality for many parents of children with autism: the economic, social, and emotional challenges they face, often resulting in one parent having to leave work to provide full-time care.
Autism Spectrum Disorder (ASD) is a developmental condition that affects communication, behaviour, and social interaction. While the focus is often on the challenges faced by individuals with autism, the impact on their families, particularly parents, is profound.
Many parents, especially mothers, are forced to reduce their working hours or quit their careers to care for their children, leading to a loss of income and increased financial strain.
A recent study on the economic burden of blindness in India, published in the Indian Journal of Ophthalmology, sheds light on the broader issue of caregiving and its impact on productivity.
The study found that caregivers of individuals with disabilities, including blindness, lose a significant portion of their productive time, with some estimates suggesting that caregivers spend up to 20% of their time providing care. This loss of productivity translates into a substantial economic burden for families and the economy at large.
While the study focused on blindness, the findings are equally relevant to parents of children with autism. Caring for a child with autism often requires round-the-clock attention, therapy sessions, and frequent medical appointments, making it difficult for parents to maintain full-time employment.
In many cases, one parent—usually the mother—becomes the primary caregiver, sacrificing their career and financial independence.
In India, the National Trust Act, 1999, was enacted to provide support and services for individuals with disabilities, including autism. One of the key initiatives under this act is the Niramaya Health Insurance Scheme, which aims to provide affordable health insurance to persons with disabilities, including those with autism.
The scheme covers medical expenses, therapy, and other related costs, offering much-needed financial relief to families.
However, despite the rising costs of healthcare and therapy, the amount covered under Niramaya has remained stagnant for years. The scheme currently provides a maximum coverage of ₹1 lakh per annum, which is often insufficient to cover the extensive medical and therapeutic needs of individuals with autism.
Parents and advocacy groups have long called for an increase in the coverage amount to better reflect the current costs of care, but their pleas have yet to be addressed.
The economic burden of autism is not limited to India. Data from other countries, such as the United States and South Korea, provide a clear picture of the significant costs associated with autism spectrum disorders (ASD).
In the United States, the combined annual costs for direct medical, direct non-medical, and productivity losses were estimated to be $268 billion (range $162-$367 billion) in 2015, representing 0.884-2.009% of the GDP. By 2025, these costs are projected to rise to $461 billion (range $276-$1011 billion), or 0.982-3.600% of the GDP.
Similarly, in South Korea, the economic cost of ASD rose from $2.7 million in 2008 to $9.6 million in 2015. Of the total economic cost in 2015, 72.3% was attributed to direct costs (medical and non-medical expenses), while 27.7% was due to indirect costs (such as loss of productivity).
The study also revealed that the increase in economic costs was greater than the increase in prevalence, underscoring the growing financial strain on families and healthcare systems.
These figures are on par with the economic burden of diabetes and attention deficit hyperactivity disorder (ADHD) and exceed the costs of stroke and hypertension. If the prevalence of ASD continues to grow as it has in recent years, the costs associated with autism are expected to far exceed those of diabetes and ADHD by 2025.
This highlights the urgent need for increased investment in research, support services, and policies to mitigate the economic impact of autism on families and society.
While studies from countries like the US and South Korea provide a clear picture of the economic burden of autism, India lacks comprehensive data on the economic impact of ASD.
Despite the rising prevalence of autism in the country, there has been no large-scale study to estimate the direct and indirect costs associated with the condition. However, anecdotal evidence and smaller studies suggest that the economic burden is significantly high, with families often facing financial ruin due to the high costs of therapy, medical care, and special education.
The absence of such data makes it difficult for policymakers to allocate resources effectively and design targeted interventions to support families affected by autism. Advocacy groups and experts have repeatedly called for a nationwide study to assess the economic impact of autism in India, which would help in formulating policies that address the needs of individuals with autism and their families.
Besides financial burden, parents of children with autism in India face significant challenges in securing admissions for their children in mainstream schools. Many schools are reluctant to admit children with autism due to a lack of trained staff and resources.
In some cases, schools agree to admit children with autism only on the condition that parents pledge to support the salary of a shadow teacher in addition to paying regular fees.
A shadow teacher is a professional who provides one-on-one support to children with special needs, helping them navigate the school environment and academic curriculum. However, the cost of hiring a shadow teacher can be prohibitively expensive for many families, adding to their financial strain.
This practice not only places an additional financial burden on parents but also highlights the lack of institutional support for inclusive education in India.
Beyond the financial and educational challenges, parents of children with autism often face social isolation and a lack of support from their communities.
Neighbours and extended family members may not understand autism, leading to reluctance to include children with autism in social gatherings. This exclusion can be deeply hurtful and isolating for both the child and their parents.
In some cases, neighbours avoid interacting with families of children with autism, fearing that the child’s behaviour might disrupt social harmony. This lack of understanding and empathy often leads to social ostracisation, leaving parents feeling isolated and unsupported.
The emotional toll of this isolation can be immense, adding to the already heavy burden of caring for a child with autism.
This year’s World Autism Day theme emphasises the importance of advancing neurodiversity and aligning with the UN Sustainable Development Goals (SDGs), particularly Goal 8, which focuses on decent work and economic growth.
However, for parents of children with autism, achieving this goal remains a distant reality without adequate support systems in place.
Experts argue that governments and policymakers must prioritise the needs of families affected by autism by providing accessible healthcare, affordable therapy, and financial assistance.
Additionally, workplaces need to adopt more flexible policies to accommodate parents who are balancing caregiving responsibilities with their careers.
It is crucial to recognise the economic, social, and emotional challenges faced by parents of children with autism. The loss of income and productivity not only affects individual families but also has broader implications for the economy.
By advancing neurodiversity and creating inclusive policies, we can ensure that parents of children with autism are not forced to choose between their careers and their children’s well-being.
This World Autism Day, let us commit to building a more inclusive society where individuals with autism and their families can thrive, and where no parent has to sacrifice their ability to work to provide care. It is also imperative for the government to revisit the Niramaya scheme and increase the coverage amount to better support families in need.
Furthermore, India must conduct a comprehensive study to assess the economic burden of autism, which will help in designing effective policies and interventions.
Additionally, schools must be encouraged and supported to adopt inclusive practices, ensuring that children with autism have access to quality education without placing an undue financial burden on their families. The practice of requiring parents to fund shadow teachers should be addressed through policy changes and increased funding for special education resources.
Finally, communities must work towards greater awareness and acceptance of autism. Neighbours, friends, and extended family members should be educated about autism to foster a more inclusive and supportive environment. Social gatherings and community events should be made accessible to children with autism, ensuring that they and their families are not left out.
(Dr Shakeeb Ahmed Khan is the father of a child with autism and consultant to NGOs working in the disability space. Views are personal. Edited by Majnu Babu).
