Union Ministry of Health and Family Welfare has announced inclusion of autism in the list of diseases to be covered under the Rahstriya Bal Swasthya Karyakram

It was not until Hindi films like Barfee , My Name is Khan , and Main Aisa Hi Hoon hit the screens that many people knew about autism, a developmental disorder which is characterized by communication difficulties, social, behavioral challenges as well as repetitive behaviors. Neither do a large number of people still know that Isaac Newton, Albert Einstein, Adolf Hitler and Charles Darwin are all believed to have been suffering from autism. The diagnosis of autism is difficult due to the use of different diagnostic criteria. The WHO perspective about health, especially mental health, shows an escalation in the disease burden for autism from 10 per cent to 14 per cent over the period 1990 to 2011. It is expected to rise to 15 per cent by 2020. Against this scenario, Union Health and Family Welfare Minister Ghulam Nabi Azad has announced that autism would be included in the list of diseases to be covered under the just launched Rahstriya Bal Swasthya Karyakram that will screen children for defects at birth, diseases, deficiencies and development disorders. India is the only country in the South-East Asia region that has a legislation covering autism. The National Trust for Welfare of Persons with Autism, Cerebral Palsy, Mental Retardation and Multiple Disabilities provides for legal guardianship, capacity building, awareness programs, and financial support to organisations providing services to persons with autism. Services need to be scaled up, keeping in mind the large numbers who remain under-served and unserved. To assess the degree of disability in ASD, the Ministry of Health, Ministry of Social Justice and Empowerment, The National Trust and several national institutions developed and tested the Indian Scale for Assessment of Autism (ISAA) available free on the National Trust website but it is awaiting official approval. Certification of children with autism is also a long drawn process and needs to be streamlined. According to officials in the Ministry of Health and Family Welfare, diagnostic and management services are available at major government hospitals and medical colleges. More than 24 lakh children with disabilities (including children with autism) are studying in regular schools under the Sarva Shiksha Abhiyan. Other rehabilitation services, which include pre-school and vocational training, are available through government and NGO centres.

However, programmes dealing with disabilities are being implemented in silos by the Ministries of Health and Family Welfare, Social Justice and Empowerment, Women and Child Development and Human Resource Development. The U.S. Centre for Disease Control estimates that at least one in 88 individuals are affected with Autism Spectrum Disorder (ASD) while a recent study in South Korea found one in 38 children affected. The cost of autism to society in the U.S. is $ 137 billion per year. A major barrier to improving the health and well-being of children and families touched by autism is the lack of knowledge and expertise. This limits access to care and early intervention and impedes the development of public health programmes that can improve the quality of life for individuals with ASD and their families. These challenges are further complicated by a shortage of experts and trained professionals. While there are no authentic figures of the disease burden in India, one study states that there are two million children though some others believe it would be 8 million. Preliminary findings from a study conducted by INCLEN found that ASD prevalence across five States in north and west India was as high as one in 125 children between 2-6 years age group and one in 80 among children in 6-10 years age bracket. When completed, this will be the most comprehensive study to measure the prevalence of autism in India. Research on autism in India is negligible and there is an acute dearth of human resource and experts to deal with the condition. While there are no laboratory tests, autism and ASD can be diagnosed in children by the age of two years. There are several international screening tools for autism. The most commonly used international tool in India is Childhood Autism Rating Scale (CARS). Statistics show 40 per cent of all children with autism wait for more than three years for a clear diagnosis, around 70 per cent of people with autism have an IQ below 70 while some people with autism have normal or high intelligence. With the disorder threatening to be a major public health crisis, the South Asian countries earlier this week got together and adopted declaration committing to include ASD in all mainstream policies and programmes that address issues related to early childhood development. Under the Delhi Declaration, the South East Asian region countries have committed to develop early detection and surveillance services at all levels and to evaluate and implement cost effective and efficacious programmes that address life cycle needs of persons with ASD and to undertake collaborative research among member countries on all aspects of autism. Building on the momentum of the conference on Autism Spectrum Disorders and Developmental Disabilities in Bangladesh in 2011, and the unanimous adoption of the Dhaka Declaration, the South Asian Autism Network (SAAN) was born. It is a partnership between Ministries of Health of this region which will now work together on autism.