Although things are slowly changing for children living with autism in the country, people still face challenges with late diagnosis for children with autism due to limited knowledge and a shortage of trained professionals. This was raised by caregivers and parents during the World Autism Awareness Day observed in the capital yesterday. Autism, often referred to as autism spectrum disorder is a developmental condition caused by differences in the brain and can affect how a person absorbs, processes and responds to information. According to the World Health Organisation, about one in 100 children has autism.
Karma Sonam Dorji, a parent of a child living with autism shared her experience of a lengthy diagnosis process highlighting the lack of awareness about autism and a shortage of trained professionals.
“So, we took him to India and that is where we confirmed that he had mild to moderate autism. And that is where we then sat with the experts to learn how to give home interventions and then there was no looking back. We learnt how to deal with him at home, how to teach him, how to interact with him and we got interested in autism and that’s how our world opened up, a whole new world for us.”
To help and exchange experiences among children with disabilities, Karma co-founded the Phensem-Parents Support Group. Officially registered as a Civil Society Organisation in 2020, the group has around 200 members in Thimphu, Paro, Phuentshogling and Sarpang today.
While public awareness of autism is still in its infancy in the country, some parents said that the increase in the number of Special Education Needs or SEN schools in the capital is a positive indicator. There were only two SEN schools in Thimphu until last year.
“Those two schools used to be the sole schools responsible for getting or giving admissions to all the children with special needs, including different kinds of disabilities. And this year, it is good news for parents living with children with disability that the number of schools has been raised to six,” said Prem Kumar Neopanay, a parent.
“Compared to last year we have been seeing some improvement. Earlier, my child did not like to mingle and socialise. However, after enrolling him in ECCD and taking him to Ability Bhutan Society in Motithang, we have been observing some changes and he has become quite calm,” said Tshering Dema, also a parent.
A paediatrician at the National Referral Hospital highlighted the prevalence of autism in the country.
“So, in India, it is supposed to be prevalent at one in every 60 to 100 children. And they say that it might be an underestimation. And in the West, it is like one in every 40 children is diagnosed with autism every year. I am sure we would also be at the same prevalence rate in Bhutan because, in my experience as a paediatrician for the last 10 years, I have seen it increasing,” said Dr Kinley Pelden, a paediatrician at the JDWNRH.
Meanwhile, unlike the previous years, six organisations working for persons with disabilities came together to observe World Autism Awareness Day yesterday at the Kaja Throm in Thimphu.
“Earlier all these organisations working for people with disabilities have been doing it on our own. But when we came together, the participation from the public was more. When we came together we could talk about various aspects of disabilities in Bhutan. So, that way more people and organisations come together, I think the awareness was better,” said Kunzang N Tshering, the executive director of Ability Bhutan Society.
The Ability Bhutan Society initiated observing the day annually in 2013 in accordance with the Royal Command of Her Majesty The Gyaltsuen.
Devika Pradhan
Edited by Sonam Pem