The Bhutanese Leading the way.
Every child or adult with autism has unique strengths and challenges, so the approach to autism treatment and interventions as early as possible is very important for every child. However, there are limited specialists and only one intervention service in the country.
The Communication Officer of Ability Bhutan Society (ABS) shared that there is a need for occupational therapists, speech therapists, physiotherapists and other specialists.
Due to the limited number of specialists, children with autism are not getting enough therapy sessions and also a proper diagnosis for autism.
ABS is the only organization that provides intervention services based in Thimphu. Therefore, it makes it hard for the parents who have children with autism outside Thimphu to attend the sessions as required. And so the parents are taught to conduct the sessions at home since a child with autism are required to do the sessions consistently.
Namgay Om, the intervention in-charge, ABS shared that children with autism have challenging behaviors, and social communication challenges, such as eye contact, facial expressions, and tone of voice, some are picky eaters and have issues with communicating.
Children with autism in ABS are mostly non-verbal and a few use single or two words. There are a few with high functioning autism, where they can communicate and understands but they face difficulty in expressing themselves, and there are a few with echolalia like repeating words.
ABS tries to identify the strength areas of a child with autism, as focusing on a child’s strengths will be easier for the service provider and for the parents as well. If a child is drawn towards drawing and art work then that must be encouraged.
Namgay Om said they face challenges in terms of providing intervention services for every child as it is very difficult to reach all of them, and it is the same with the parents all over Bhutan, but they have no one in Thimphu to put them up, and so they are left behind. Many children come late for intervention due to no services being available in other dzongkhags.
By the time parents come with their child, it gets late for the interventions, she added.
There are positive outcomes brought by ABS, for instance, children with autism showing tantrums and challenging behaviors have reduced after joining ABS with consistent therapy sessions.
ABS has not only provided intervention services but has also enrolled 5 children with autism in Changangkha MS School, Samtse and 2 in ECCDs this year.
However, parents of children with autism are worried there is no learning path for their children after they graduate from the inclusive schools like Changangkha MSS.
The worry for parents also is that for children with autism in inclusive schools the need for exams from class 4 onwards and board exams at class 6, 8 and 10 will mean that their children cannot compete with mainstream children.
These inclusive schools would also be dis-incentivized to take in autistic children as their pass percentage would suffer.
Parents hope that the government can create a more inclusive academic path for such students in such schools.
Ngawang shared that children with mild disabilities are only accepted in schools even in inclusive schools and children with severe disabilities are left out. However, ABS takes in children with autism below 14 years, irrespective of the severity of their disabilities.
“Personally, I feel, there should be more organizations like ABS, so that every child will get early intervention services. We require more therapists, even in JDWNRH, they have limited specialists. Upon asking parents about how many times they take their child to the occupational therapist, speech therapist or physiotherapist, a few parents said only once a month which means there will be not much improvement brought in the child,” Ngawang said.
She also said the other challenge is that the parents’ willingness and acceptance of their child diagnosed with autism. It is hard for them to accept the fact because they look just like any other kid. And that’s where it gets late for early interventions.
Early interventions occur as early as 0 to 3 years of age. In this period, a young child’s brain is still forming, which means it is more “plastic” or changeable than at older ages. Because of this plasticity, treatments have a better chance of being effective in the longer term.
In terms of awareness, compared to the past, parents are aware of autism because the number of intakes in ABS has increased, but they still need to work on creating awareness and advocating, because people may not really know and understand autism.
There are 50 registered children with disabilities and majority with autism. 40 children are availing services and the remaining 9 are on standby. Overall, there is no data maintained for children with autism, but according to National Population and Housing Census, there are around 15,000 people with disabilities.
Meanwhile, 2 April is observed as World Autism Awareness Day globally to raise awareness about people with autism. Ability Bhutan Society, Disabled People’s Organization, PhenSem Parents Supporting Group, Bhutan Stroke Foundation and Draktsho observed “Lighting It Up Blue” at the Memorial Chorten in Thimphu.
