My second granddaughter was born in 2007. She was a happy child and spent hours babbling meaninglessly and laughing by herself in the first few months. She grew normally, speaking a few words and then little sentences. But soon, when she was about a year and a half, autism struck. Fortunately, my daughter chose not to live in a state of denial. She sought medical help and a painfully slow therapy commenced. At sixteen, she is still autistic, as those on the autism spectrum usually do—as in the case of Dr Shaun Murphy in the excellent serial, The Good Doctor—but my daughter and her family are better able to cope now.
The sad truth is that autism is growing rather than declining. Two decades ago, it was estimated at one in every 100 persons in the US; now, the Centres for Disease Control and Prevention estimates it at one in 36. According to a 2021 study published in the Indian Journal of Pediatrics, the incidence is one in 68 in India. A survey led by S K Raina in Himachal Pradesh in 2017 came out with the startling figure of a 0.15 percent incidence of autism in rural, tribal and urban areas of three districts of the state. Even if we take the all-India average, there are 20 million people in India who have autism, almost the population of Australia.
The boy-girl ratio in autism cases is 3:1 in India and 4:1 in the US. In a paper published in Lancet Public Health in 2018, written by Obusanya B O and others, it is stated that 95 percent of people with neurodevelopmental problems are in middle- and low-income countries. The figures for India are probably understated because there is a lack of awareness. Even educated and well-to-do people choose to live in a state of denial about the neurodevelopmental problem their offspring face, thus lowering their chances of improvement in the very early stages. As we approach World Autism Day on April 2, we need to take a hard look at what we can do collectively as a society.
Acceptance of the problem by parents and caregivers is the first step towards addressing it to the extent possible. The earlier this happens, the greater the chances of mitigating it. On World Autism Day last year, the UN said, “We are moving away from the narrative of curing or converting autistic people and instead focusing on accepting, supporting and including autistic people, and advocating for their rights. This is a major transformation for all autistic people, their allies, the wider neurodiverse community and the world at large. It enables autistic people to claim their dignity and self-esteem, and to become fully integrated as valued members of their families and societies.”
In May 2014, the 67th World Health Assembly adopted a resolution titled ‘Comprehensive and Coordinated Efforts for the Management of Autism Spectrum Disorders’, supported by more than 60 countries. The resolution urges the WHO to collaborate with member states and partner agencies to strengthen national capacities to address autism and other developmental disabilities.
The WHO's efforts focus on increasing the commitment of governments to action on improving the quality of life of people with autism, and providing guidance on policies and action plans. It also tries to contribute to strengthening the ability of the health workforce to provide appropriate and effective care and promote optimal standards of health and well-being for people with autism. It promotes inclusive and enabling environments for people with autism and other developmental disabilities and provides support to caregivers.
The scale of the problem is huge in India. Legally, provisions are in existence. The omnibus Article 41 in the Constitution reads: “The State shall, within the limits of its economic capacity and development, make effective provision for securing the right to work, to education and to public assistance in cases of unemployment, old age, sickness and disablement, and in other cases of undeserved want.” The National Trust for Welfare of Persons with Autism, Cerebral Palsy, Mental Retardation and Multiple Disabilities Act, 1999, has been passed and a national trust exists. The Mental Healthcare Act 2017 confers fair treatment to the mentally challenged in all matters as a ‘right’. A department of empowerment of persons with disabilities has been set up.
Several civil society initiatives strive to do their best within their resource limitations. The Centre for Autism and Other Disabilities Rehabilitation Research and Education (CADRRE) in Thiruvananthapuram, with which I am associated in a limited manner, is innovative and energetic, having introduced ayurvedic massage as an adjunct to therapy and expanding in several areas and age groups purely on the strength of donations. As a member of the CSR committee of Tata Power, I helped promote an initiative on autism jointly with CADRRE to bring civil society together and extend autism care outside Tier 1 cities. Several other Tata companies and corporate groups are now interested in this field.
The autistic and mentally disabled are politically weak, as they cannot raise their voice for their rights. Some of them may not even be able to vote. Yet, much needs to be done, particularly in rural and semi-urban areas. There is a massive shortage of qualified therapists, and we must plan online courses combined with field experience to quickly increase their numbers. Anganwadi workers could be trained in the early identification of symptoms.
Online programmes could be organised on a large scale for parents and caregivers in all languages. More mainstream schools should have facilities for the autistic. General medical practitioners need to be acquainted with the symptoms of autistic behaviour, and a network for dealing with this disorder needs to be created.
It is also necessary to revive the idea of establishing a central university for teaching and research in this area, which former Finance Minister Arun Jaitley had promised in his Budget speech of 2015. All the paperwork for this new centre of excellence has been completed by the ministry of social justice and empowerment, but it is yet to take off.
The prime minister has repeatedly stated his government's resolve to deal with issues facing the divyang with sympathy and speed. It is now the responsibility of the department to bring together ministries, corporate groups and civil society to create a network that penetrates the darkest reaches of India and set up the central university, a parliamentary assurance made almost 10 years ago.
(Views are personal)
K M Chandrasekhar | Former Cabinet Secretary and author of As Good as My Word: A Memoir