South Asian Autism Network Conference

A daylong Conference of South Asian Autism Network (SAAN) is being held today. Representatives from India, Bangladesh, Thailand and WHO, SEARO are participating in the daylong conference. Wishing the Conference all success, the Union Minister of Social Justice & Empowerment Kumari Selja in her speech said “I am really happy to participate in this august regional conference which is focussing its attention on improving the situation of persons with Autism Spectrum Disorder. I welcome all the international and national delegates to this conference. 

Autism is a complex condition and individuals with autism have a completely different social understanding of the world from those who are non-autistic. The challenges in processing information and in social communication make it hard for most them to express themselves and advocate for their rights. This is why parents, activist parent groups and NPOs have taken the lead in advocating for their children and bringing about these changes we now see. 

In order to address the needs and requirements of persons with certain specific developmental disabilities, who remain marginalised and could not speak for themselves, Indian Parliament enacted the National Trust Act in the year 1999. It was the answer to parents of their worry “What would happen to my child, when I am no more”. The National Trust Act is focussing more deeply on persons with autism, cerebral palsy, mental retardation and multiple disabilities. 

To implement the mandate of National Trust, a number of schemes and programmes are implemented through a network of over 800 registered organisations across the country. These include; appointment of legal guardians; running residential facilities “Samarth” and “GHARAUNDA”; one of its kind, Health Insurance Scheme “Niramaya”, which won the Times Social Impact Award; caregivers Training and Deployment Scheme “Sahyogi”, early Intervention Äspiration Scheme, and Scholarship Scheme “Gyan Prabha”. 

One breakthrough initiative is the marketing federation of National Trust namely Association for Rehabilitation under National Trust Initiative of Marketing (ARUNIM)”. This inculcates entrepreneurial approach towards economic empowerment and self reliance for persons with disabilities with focus on persons with Autism, Cerebral Palsy, Mental Retardation and Multiple Disabilities. 

Another initiative undertaken by National Trust is the advocacy for the Indian Scale for Assessment of Autism (ISAA) developed to help professionals assess children with autism. This Scale was validated with a large sample, from across the country. 

We are also working for creating trained human resources for working in the field of disabilities. This activity in the country is regulated through the Rehabilitation Council of India under my Ministry of Social Justice and Empowerment. The council is a statutory body created by an Act of Parliament. For creating dedicated and trained people to work with Autistic persons a Diploma in Special Education (Autism Spectrum Disorder) was started in 2003. This is now being conducted at 18 centres with an intake capacity of 450 students each year, countrywide. There are 393 qualified special educator for such children registered with RCI. 

We are also running vocational training and employment guidance facilities at different National Institutions working under my ministry. Many NGOs are also running such services. 

In the first South Asian Autism Network Conference, at Dhaka, Bangaldesh, Smt Sonia Gandhi, President, Indian National Congress, Chairperson, UPA and Chairperson, Indian Chapter of Autism had cited a three pronged approach for this sector. The approach included empowering parents, bringing people living with autism to centre of attention and creating institutions to undertake research into its various facets to take care of Autism related issues. 

Research on autism is still at a nascent stage. Greater focus needs to be placed on this if we are to evolve services and polices to benefit persons with autism. While educational options are opening up, we need more teachers with skills to help children with autism learn. While many individuals with autism may have no intellectual impairment, yet their different ways of processing and expressing communication along with their different social understanding can affect their ability to function independently in the every day world. There has to be greater understanding of the critical importance of alternative and augmentative modes and tools of communication in addressing this lifespan requirement. 

There is another important issue relating to Autism. The focus, even now, continues to be on children than on adults. The needs of adults do not receive the attention it deserves. There is a crying need for open and sheltered employment and adult residential services that ensures them a dignified life after the demise of their parents. This is not a matter of providing care, but a matter of right. 

My Ministry is also administering the Persons with Disabilities (Equal Opportunities, Protection of Rights and Full Participation) Act, 1995 for empowerment and inclusion of persons with disabilities. 

In 2007, the country ratified the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD). An exercise has been initiated to harmonise the existing laws, including the above Act, with the provisions of UNCRPD. 

During the exercise to harmonise the Act, it was felt that rather than making numerous amendments it would be better to replace it with a new legislation. This revised PwD Act is under consultation with key stakeholders in the field of disabilities. It is proposed to include specific disability of Autism Spectrum Disorder as one of the specified disabilities to be covered under the proposed legislation to ensure that the rights of persons with autism are well protected and promoted. 

I am happy to inform you that with a view to further improve implementation of government policies the Government decided in May, 2012 to establish an independent Department of Disability Affairs in order to meet the aspirations of persons with disabilities. This is the only new Department in Government of India to be created in a couple of decades. We are committed to create a humane and inclusive environment for persons with disabilities. 

I understand that the Conference is expected to adopt Delhi Declaration and Charter on Autism. I am sure it would go a long way in helping this sector”.