The Bhutanese Leading the way.
As Autism Spectrum Disorder (ASD) cases continue to rise globally, and in Bhutan, experts at the National Disability Conference in Thimphu are calling for a systematic overhaul of autism care. With limited resources, a shortage of trained professionals, and a lack of specialized services, the conference emphasized the urgent need for early diagnosis, targeted support, and community-driven initiatives to ensure that children with autism receive the care and inclusion they deserve.
What is autism spectrum disorder (ASD)?
Dawa Drukpa, Special Educator, MoESD said, “Autism, as described by the World Health Organization (WHO), is a neurodevelopmental disorder characterized by challenges in social communication and interaction, along with restricted and repetitive patterns of behavior.”
“Since it is a neurodevelopmental disorder, it affects a child’s ability to function across various areas of life,” he added.
He said that ASD typically begins before the age of three, and can persist throughout a person’s life, though symptoms may change over time. Some children exhibit signs of ASD within the first 12 months, while others may not show symptoms until 24 months or later. In some cases, children with ASD gain new skills and meet developmental milestones until around 18 to 24 months, after which they may stop acquiring new skills or even lose previously developed ones.
Global and Local Prevalence
Globally, the prevalence of autism has significantly risen over the years but it may also be better detection. Data from the WHO and CDC shows the rate increasing from 1 in 5,000 in 1971 to 1 in 36 in the USA in 2020. Worldwide, the 2023 prevalence rate stands at 1 in 100, emphasizing the growing need for awareness and intervention strategies.
In Bhutan, emerging data also reflects this trend. The Jigme Dorji Wangchuck National Referral Hospital (JDWNRH) recorded 30 cases of autism as of April 2021. Changangkha Middle Secondary School reported 29 cases, with 22 boys and 7 girls, according to school administration records from March 2023. Similarly, Ability Bhutan Society reported 15 cases (12 boys and 3 girls) as of September 2023. Other schools, such as Yangchen Gatshel School and ECCD Hejo, also reported cases in recent years.
No such thing as ‘Virtual Autism’
The conference also addressed the rise of what has been termed ‘Virtual Autism’, with approximately 200 cases reported among children in country. Virtual Autism refers to developmental delays linked to excessive screen time during early childhood. The term, first introduced by a Romanian clinical psychologist, describes symptoms related to screen overuse that can affect a child’s communication and developmental skills.
However, the term Virtual Autism is not recognized as a formal medical diagnosis, and is distinct from ASD. WHO does not endorse the term, and there is no formal process for its diagnosis. Many medical professionals, including pediatricians in Bhutan, find the term controversial and misleading.
Pediatrician Dr Kinley Peday from JDWNRH said, “There is no such thing as Virtual Autism. My primary concern here is that the public might mistakenly believe that screen use causes autism or that removing screens would cure a child of autism.”
On that note, Dr Kinley Peday said that the current research on the effects of screen time on ASD is inconclusive. Children with ASD often exhibit social communication challenges and may naturally gravitate toward screens as a form of self-soothing or stimulation. This raises the question of whether excessive screen time contributes to developmental delays or if children predisposed to ASD simply use screens more. She acknowledged that this remains a global topic of research and speculated that in 2-3 years, there might be more concrete answers.
Causes and Associations of Autism
While the exact cause of ASD remains unknown, causes that are in suspicion as per the literature review was presented, such as the multiple genetic and environmental associations. However, Dr Kinley Peday emphasized that these associations should not be confused with causation. For example: It was presented that certain genetic conditions, such as Fragile X Syndrome, are closely linked to ASD. Individuals with Fragile X Syndrome lack a critical protein necessary for brain development, leading to developmental challenges. However, this genetic link is still under study, and it is not definitive that every genetic mutation directly causes ASD.
Associations included advanced parental age, maternal infections during pregnancy, and exposure to environmental toxins like pesticides and heavy metals. While these factors may increase risk, there is no conclusive evidence that they directly cause ASD. Dr Kinley Peday further clarified that these are associations, not causations. She drew an analogy with Down Syndrome, which has a clearly identified genetic cause. In contrast, with ASD, studies are ongoing globally, including in countries like India, to understand the genetic and environmental underpinnings.
The conference also emphasized the challenges faced by Bhutanese educators in supporting children with ASD in mainstream classrooms. Many teachers lack the necessary training and resources to implement effective inclusive strategies. Early Childhood Care and Development (ECCD) facilitators acknowledged this gap and emphasized the need for specialized training to better understand the needs of children with ASD.
Dr Kinley Peday addressed the issue of training for educators and caregivers, acknowledging that funding remains a significant challenge. She said, “When it comes to workshops and training, it largely depends on funding. I don’t believe the Ministry of Health is in a position to provide financial support. Before COVID-19, the ADB funded a program organized by the NCWC, where we trained caregivers for children aged 6 months to 3 years. We were involved in developing the training modules and curriculum.”
“However, we didn’t focus much on children with disabilities at that time. Our priority was to train caregivers for typically developing children, as we felt including children with disabilities would be more challenging. Moving forward, I believe the Ministry of Health, the Ministry of Education and Skills Development should collaborate. If the necessary funding is secured, I am always willing to contribute my knowledge and help with the training,” she added.
A parent of an 8-year-old child with autism raised a concern about the increasing prevalence of autism worldwide, and questioned how Bhutan can improve its approach to treating children with autism. The parent emphasized that autism is different from other disabilities, as it often involves multiple challenges. While ramps and railings may be helpful for physical disabilities, children with autism have specific needs that go beyond such measures. As an educated parent, the speaker feels fortunate to be able to advocate for their child, but they worry about children whose parents may not have access to support services. The parent suggested that Bhutan might consider establishing an autism center to provide specialized care.
The expert panel responded by acknowledging that while disability policies are in place, they require revision to meet the evolving needs of children with autism. They suggested a top to bottom revision of the system, incorporating the voices of civil society organizations (CSOs), disability organizations, people with disabilities, and government officials. A collaborative effort is needed to address the various barriers physical, economic, and social that families face.
A key recommendation was that each dzongkhag should have a revised, community-driven care system to support children with autism and their families. Over time, both the child and the caregiver can become exhausted by the demands of care, and a system that involves community support is crucial for long-term sustainability.
The panel also highlighted the need for trained professionals, such as therapists and technicians, to manage care for children with disabilities. This requires a combined effort from all sectors and the involvement of caregivers in planning activities.
The importance of advocacy by parents and caregivers was also emphasized. By voicing their concerns and challenges, caregivers can help raise awareness and drive change. One major concern raised by pediatricians is the shortage of allied health professionals, particularly occupational therapists, in Bhutan.
Currently, there are only four occupational therapists one in each regional referral hospital and four in JDWNRH who are responsible for a wide range of patients. This shortage limits the availability of specialized services for children with autism, and even when these services are requested, they are often not addressed in official documents.
Given the current limitations, experts noted that establishing an autism center in Bhutan may be a distant goal unless these systemic issues are addressed. They urged parents and caregivers to form support groups or associations to collectively raise their concerns, as individual advocacy can sometimes be perceived as having an agenda.
Experts also clarified that ASD is a lifelong condition with no known cure. ASD is not a disease but a neurological disorder present from birth. The sooner caregivers accept this, the better it is for the child’s development and overall well-being. With proper care and support, the severity of autism can be managed, leading to improved growth and productivity for individuals with autism.
Similarly, Dawa Drukpa presented three case studies of children diagnosed with ASD in Bhutan, each illustrating unique challenges and outcomes. The first case involved a boy diagnosed at three years who struggled with language development despite having a supportive family. In the second case, early intervention helped a child diagnosed at 2 years and 3 months, but the child still faced social barriers in school. The third case, involving a child diagnosed at six years due to a lack of awareness, faced significant challenges in adapting to school routines and social expectations.
These case studies emphasized the importance of early diagnosis and intervention. Without timely support, the developmental gap only widens, making it more difficult for children to integrate into school and society.
To address the gaps in autism care, recommendations, such as including integrating disability studies into the national curriculum to promote inclusivity from a young age.
