< Back to previous page

Dr Sunita Maleku Amatya: A pioneering advocate for the rights of people with autism in Nepal

Posted: 14 February 2019

Nepal, Disability, Impact, Inclusion,

Australia Global Alumni

Ever since her son was diagnosed with autism in 2008, Australia Awards alumna Dr Sunita Maleku Amatya has dedicated her life to making a difference. This anaesthesiologist and loving mother of two is an activist advocating for the rights of people with autism and helping ensure they can participate meaningfully in society.

Born and brought up in Kathmandu as her parents’ only child, Sunita had the best schooling opportunity and a caring family environment, which she says has shaped her life to become who she is today. While always encouraging her to work hard, her parents also bestowed upon her the values of empathy and love towards fellow human beings. ‘This is very important for the kind of social and humanitarian work I do today,’ she says.

Sunita is the Chairperson of the AutismCare Nepal Society (ACNS), a national centre for autism founded in 2008 by parents like her with children with autism. In Nepal, there is still a stigma around autism, and it was not an easy task for Sunita and her colleagues to establish an organisation to work on this issue. ‘When my son was diagnosed,’ she says, autism ‘was a foreign concept to me and our community’. However, she trained herself to learn more and understand her son better. She proudly shares, ‘my son has taught me more than I have been able to contribute to society’.

Under Sunita’s leadership and in collaboration with other passionate parents of children with autism, ACNS has been making a significant difference in the lives of people with autism in Nepal. Activities delivered through ACNS range from providing both diagnostics and therapeutic autism care services, to lobbying and advocating for appropriate policies for autism. ACNS also runs a school called Aarambha Autism School to provide training to parents, children and teachers. So far, ACNS has provided training to more than 400 families from 32 districts in Nepal. ‘I have been an advocate and activist and have always tried to become a voice for people and the families affected by autism,’ Sunita says. ‘I have worked consistently to bring issues relating to autism into the Government’s attention. I am tirelessly lobbying for people with autism’s right to education.’

Her hard work has already achieved some big rewards. For example, the Government of Nepal recognised autism as a separate category of disability in the Nepal Disability Act 2015. Likewise, parent-mediated services run by ACNS have been found very helpful to widen autism-related outreach services in different parts of Nepal in a cost-effective way.

Sunita was selected to participate in the Australia Awards Short Course on Inclusive Education at the Queensland University of Technology in 2016. Through the support of Australia Awards, she also participated in the Inclusive Education Summit 2017 held in Adelaide in October 2017.

‘The exposure I received through Australia Awards has been beneficial in many ways, as it has helped me understand the core values of inclusive education and inclusion’ says Sunita

‘Our goal for people with autism is for them to be independent… and be an integral part of our society. Inclusive education is the foundation for this.’

She adds that the knowledge and skills she gained through the Short Course were also helpful for her when lobbying with policy makers, thanks to her greater confidence and insights. As a result, she says proudly, ‘Autism is addressed in the Nepal Education Act and in Inclusive Education policy’.

Autism, Sunita says, is not an easy issue to deal with. It differs from person to person even among people from the same age group. It is invisible and a complex disability to perceive; understanding autism-related needs can pose great challenges. ‘I advocate for autism care but when I am asked what exactly I need for autism, it’s a big challenge for me to respond because autism comes with different faces,’ she points out. ‘I wish I had a definite answer.’

Yet these unique and complex challenges have not stopped her. Rather, they have been a source of determination for her and her team to explore future interventions at a wider scale. She is discussing with several stakeholders how they can have more competent human resources to effectively implement inclusive education policies, particularly those related to autism. ACNS is also working towards the development of special teachers to address this issue. Sunita is still keen to learn more about how she can contribute to create meaningful and engaged lives with dignity for people with autism.

She feels that every human being deserves the best in their life, including people with disability.

‘We need to respect diversity within disability,’ she says. ‘I want to continue to raise my voice and bring more visibility on autism in Nepal’s disability map.’

Working for people with autism requires a lot of hard work, dedication and commitment. However, the satisfaction that such hard work brings is special. ‘It is a unique sort of happiness that cannot be translated into material terms. It has taught me to become a good human and value others,’ says Sunita. ‘Campaigning for people with autism has become my passion.’

 

Australia Awards are prestigious international Scholarships, Fellowships and Short Courses funded by the Australian Government. Australia Awards Short Courses aim to contribute to the long-term development needs of Australia’s partner countries in line with bilateral and regional agreements.