We need to talk about autism

News: United Nations has mandated April as autism awareness month and April 2 as Autism Awareness Day. In India, Autism is emerging as a major paediatric concern. So, Our systems have to be ready for it.

What is Autism?

Autism is not a “disease” that can be cured. It is a condition that arises from certain neurobiological factors.

Characteristics: A person with Autism will have a lifelong set of developmental impairments in the domains of communication and social responsiveness. The person is accompanied by a set of restrictive and repetitive behaviours.

Research also suggests that sleep disturbances — fragmented and erratic sleeping, frequent and prolonged night waking — impact over 80% of children with autism.

What are the steps taken by India to tackle autism?

1) Autism was recognised as a disability in 2016 under the Rights of Persons with Disabilities (RPwD) Act, 2016. 2) The bulk of learning for autistic children in most schools, private and NGO-run, is implemented through Individualised Education Plans (IEP). It contains joining dots, tracing letters, and putting objects from one container to the others, etc.

3) In 2019, the All India Institute of Medical Sciences (AIIMS), launched an app — PedNeuroAiimsDiagnostics. The app aims to help in the early detection of Autism. Despite being very robust, the app has not seen much traction.

What are the challenges associated with combating Autism in India?

1) Awareness is low, and the stigma is high. For instance, wearing amulets, making children to drink the water touched by a crow, etc.

2) Low availability of data: A Government of India statistical profile from 2021 about Persons with Disabilities (PwD) does not account for autism since it bases itself on the Census data of 2011. For instance, A 2019 all-India statistic reveals a total of 10,338 persons with autism in India. Delhi reported zero cases as did many other states. But that is not the ground reality.

3) There is no one autism. There are many autisms: autism research shows that it a “spectrum of conditions.”

How can India face the challenges associated with Autism?

Health, education and awareness campaigns are the three domains the government should focus on.

Ramping up autism screening: This is because there are no biomarkers to detect the risk of autism.

Curriculum frameworks should be dynamic and responsive to the spectrum of autism are the need of the hour. RCI (Rehabilitation Council of India), NCERT (National Council of Educational Research and Training) and NIOS must collaborate on the creation of learning material and teacher training programmes for IEP.

Autism awareness campaigns need to popularise legal rights and government benefit schemes, which include free education and financial support for benchmarked disabilities.

The National Institute for Empowerment of Persons with Multiple Disabilities (NIEPMED) under the Ministry of Social Justice and Empowerment disseminates such information. But awareness needs to be raised.

Source: This post is based on the article “We need to talk about autism” published in the Indian Express on 2nd April 2022.