Nadia’s Story: Living with Autism in Lao PDR

Posted April 1, 2022

Nadia is just like any other 15-year-old girl in secondary school. She enjoys dancing, singing, painting, and playing sports. After school, she looks after her younger brother and helps her mother with domestic chores like cooking, washing, and cleaning. But there is one thing that makes Nadia stand out from other children her age, something that makes her unique.

Nadia has autism. More specifically she was diagnosed with Autism Spectrum Disorder (ASD). And so even though she is like so many other girls her age, in so many parts of her life, Nadia communicates differently than other children. This gives Nadia a unique way of understanding the world, interacting, and communicating with others, like so many others with ASD around the world.

Data estimates there are 52 million people with autism worldwide, affecting around 1% - 2% of children.  According to the American Psychiatric Association, the symptoms tend to appear in early childhood and can present many challenges emotionally and socially. For Nadia, she can better comprehend when people speak slowly to her and she tends to respond in short sentences, as she can struggle when people speak too quickly or for too long. As a teenager, Nadia discovered that with these communication challenges she also had some special abilities. It was apparent that Nadia had developed a specialized knowledge on dates and times and could instantly recall what day of the week a particular date in the calendar falls on up to 10 years into the future with ease. Her parents have always expressed their pride in her abilities and kind character, but things have not always been so easy for Nadia or her family.

Being unable to diagnose Nadia in Lao PDR, she was referred to Khon Kaen Hospital in Thailand when she was two years old. After six months of screening, she was diagnosed with autism and her parents were advised on various treatments and therapies. Following Nadia’s diagnosis, her parents moved to live in Vientiane where she received a year of developmental and behavioral treatments at Vientiane Autism Centre of the Association for Autism (AFA). Remarkably, and with great support from her family and AFA, Nadia’s communication improved, and she was able to read, write and learn in a mainstream school with other children. Despite the increasing inclusion of persons with autism in schools, workplaces, and communities across Lao PDR, many continue to experience discrimination and negative attitudes, in particular those with autism.

Discrimination & Diagnosis Challenges

In Lao society, the social and cultural beliefs of our communities’ frame disability as a family’s shame or sin. Persons with autism and their families face major challenges including social stigmatization, isolation, and discrimination. Nadia’s mother recount’s her experience of this, especially the preconception that disability is contagious to others, as “many times, I was crying when I heard people call my daughter as Phi Ba (crazy) and say that they do not want to play with her as they might catch her Phi Ba.”

Although treatments are available to treat the symptoms of autism, it is a lifelong condition. It is estimated that 1 in 160 people have autism, but this figure is set to increase with improved diagnosis techniques. Currently Lao PDR lacks clear data on autism numbers as there is no official assessment of, and diagnostic process for ASD in the country. As long as children and adults with autism remain undiagnosed, their psycho-social needs remain unmet. Only a small proportion of families primarily in the cities, receive a formal assessment and diagnosis by visiting hospitals in Thailand. Many of these families are the members of the parents’ advocacy group movement of Association for Autism (AFA) in Laos including Nadia’s parents.

In a study by AFA into the effects of autism on families in Lao PDR, 25 out of 26 respondents reported challenges across many parts of their lives. From emotional wellbeing, finances, family relationships, employment, friendship, to community exclusion. As difficulties in communication is a primary challenge for children with autism, Nadia’s mother advises to not allow this to justify their exclusion from conversations or society.

“People should try and speak directly to other people with autism and ask them whatever questions you have, as many children with autism find it difficult to speak but people should never assume that they have nothing to say.”

Disability Inclusion in Lao PDR

The disability sector in Lao PDR is slowly changing following the adoption of the Law on Persons with Disabilities in 2018. The United Nations Development Programme (UNDP) is committed to practicing the central principle of the UN Convention on the Rights of Persons with Disabilities (CRPD Convention) – ‘Nothing about us without us.’ The UNDP works to empower Organizations of Persons with Disabilities (OPDs) to contribute to decision-making at all levels and across all sectors. It is crucial that persons with disabilities are included in decision making processes that affect their lives, so they can not only make important contributions to society but fully benefit from public policies and services.

For Nadia, participating in society like anyone else her age remains a life ambition. After graduating high school, she hopes to open a beauty salon - laundry in her community to earn an income and support her family. For Nadia’s mother, her ultimate hope is that children and adults with Autism are accepted, celebrated, and championed by society.

“I hope that as society continues to change and as people accept children with autism for who they are, please do the same for us as parents, your kind support could mean the world to us. As parents, we know that children with autism can be participate in all aspects of life given the chance and have a happy life like everyone else. All they need is for society to have an open mind and give them an opportunity.”

Written by: 

Ms. Jenny Douglas, Local Governance & Participation Officer; and
Ms. Seevue Xaykia, Disability Inclusion Officer, UNDP Lao PDR

The views expressed in this article are those of the authors alone and not the United Nations Development Programme.

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UNDP Lao PDR is supporting the Association for Autism (AFA) in developing the CRPD Shadow report to the CRPD Committee ahead of Lao PDR’s review under the CRPD in 2022, with AFA as Chapter Leads for the Education Chapter. UNDP is also supporting AFA as a member of the Lao OPD Network. UNDP providing a grant and technical support to the Lao Disabled People’s Association to strengthen the OPDs’ network through building their knowledge, capacity and strengthening their cooperation so they can better play their role in monitoring the implementation of the CRPD Convention and participating in decision-making.