Difficulties and prejudice experienced by parents of children with Autism

Autism Spectrum Disorder (ASD) is a developmental disability caused by differences in the brain.

According to World Health Organization (WHO), ASD is a diverse group of conditions. They are characterized by some degree of difficulty with social interaction and communication.

Other signs include unusual ways of doing things and acting, like finding it hard to switch from one activity to another, paying a lot of attention to small details, and unusual reactions to sensations.

The causes of ASD are not yet known. Scientists believe there are multiple causes of ASD that act together to change the most common ways people develop.

Tshering Yangdon is a mother of a five-year-old son who was diagnosed with mild autism or ASD at the age of four, which is considered late, as per the experts. She expressed her worries about facing rejections from several private schools in Thimphu when she tried to enroll him.

With tears in her eyes, she shared, “I’ve come across so much negativity from others when it comes to my son. People would mock his speech and laugh, and I could hear it all, but felt helpless. It’s not just strangers; even my family members and cousins would use hurtful words like ‘youngba’ and ‘tsagay’ to describe him. My biggest concern is his education. We’ve tried every private school for admission, only to be turned away. We want him to become independent like any other child so he won’t have to rely on others in the future.”

She said her son can communicate better after he had a surgery to correct his tongue tie, and he is independent when it comes to using the washroom as well.

As per WHO, all individuals, regardless of whether they have autism or not, have the fundamental right to access the highest achievable standard of both physical and mental health.

Unfortunately, individuals with autism often face stigma and discrimination, leading to unfair denial of healthcare, educational opportunities, and chances to participate fully in their communities.

Prem Kumar Neopanay, father of a 5-year-old boy, highlighted the difficulties they encounter, stating, “Our main hurdle and source of demotivation is securing admission in the Early Childhood Care and Development (ECCD) program apart from his daily challenges in communication and social interaction. Unfortunately, private day care centers do not accommodate children with disabilities. We have tirelessly visited multiple centers, only to be met with rejection.”

He said that his son was diagnosed with autism at the age of two years and seven months. Currently, his son is attending Reggio Bhutan Pre-School, a private day care center in Thimphu.

Tshering Dema, a mother of a 4-year-old boy, recounted how she learned about her son’s autism, “We were living in Gomtu, Samtse, when he was around two years old. During that time, a pediatrician visited and conducted a survey, which led to a referral to JDWNRH in Thimphu for speech and occupational therapy. That’s when we discovered he had mild autism, and we enrolled him in Ability Bhutan Society (ABS).”

“We tried everything we could, including seeking help from both religious and medical sources. Over time, we’ve seen some improvement in him. Initially, it was tough for us to adjust, but our main goal is to help him become independent, even if it’s just small steps like being able to eat and use the restroom without assistance. However, since therapy is only available in Thimphu, it took about a year for us to relocate here,” she added.

Autism frequently affects educational and job prospects, while also placing considerable demands on families providing care and support. The quality of life for individuals with autism is significantly influenced by societal attitudes, and the level of support offered by local and national authorities, according to WHO.

With the early intervention and right therapy, many children with autism were seen to be improved over time.

Pema Yuden, who has been a social worker with ABS for 11 years, shared her experience, saying, “In our country, we don’t receive specific training for this, but I’ve attended training outside on how to work with children with different disabilities. The children come to the center three times a week, where they receive sessions in two shifts on an hourly basis. Some days, we need to use physical intervention, but we’ve been trained on how to handle such situations.”

ABS is a public benefit organization founded on the recognition that persons with moderate to severe disabilities, primarily children and their families have special needs.

The concept of ABS was inspired by the vision of His Majesty and was inaugurated by Her Majesty The Gyaltsuen Jetsun Pema Wangchuck, The Royal Patron of ABS, on 6 April 2012. 

Currently there are 17 children with autism registered at the ABS with 18 staff.

As per the ABS, there are children with autism in schools and other institute too, but ABS is the only Non-Governmental Organization (NGO) providing early interventions.

There are no exact data on the number of people with autism in Bhutan.

A Pediatrician at Jigme Dorji Wangchuck National Referral Hospital (JDWNRH), Dr Kinley Pelden, emphasized, “There is no medical term such as ‘Digital’ or ‘Virtual’ autism. It’s unfortunate that even some health professionals use these terms. The exact cause of autism is still unknown in the medical field, but it relates to how the brain develops during early stages in children.”

She further noted, “I’ve encountered mothers who frequently compare their children’s developmental milestones, often worrying if their child is progressing slower than their first child. I advise them not to delay seeking assistance at the hospital if any concerns arise. It is also important to understand that delayed speech and difficulty in communication do not always indicate autism.”

“When a child is diagnosed with autism, neither the mother nor the father should be blamed. It’s common for mothers to initially feel guilt or responsibility upon receiving the diagnosis, but it’s important to understand that autism is not caused by parenting or any specific actions of the parents,” Dr Kinley Pelden pointed out.

Characteristics of autism may be detected as early as prenatal stage, but it is often not diagnosed until much later.

Autism is not strictly hereditary, but there have been instances where if an elder sibling has autism, there’s a possibility that a younger sibling may also have it, although it’s not guaranteed to happen every time.

According to foreign experts, diagnosing autism can be difficult because there is no medical test, like a blood test, to diagnose the disorder. Doctors look at the child’s developmental history and behavior to make a diagnosis.

A brief test using a screening tool does not provide a diagnosis, but it can indicate whether a child is on the right development track or if a specialist should take a closer look.

 If the screening tool identifies an area of concern, a formal developmental evaluation may be needed. This formal evaluation is a more in-depth look at a child’s development and is usually done by trained specialists, such as a developmental pediatrician, child psychologist, speech-language pathologist, occupational therapist, or other specialist.

The specialist may observe the child give the child a structured test, ask the parents or caregivers questions, or ask them to fill out questionnaires. The results of this formal evaluation highlight your child’s strengths and challenges and can inform whether they meet criteria for a developmental diagnosis.

The abilities and requirements of individuals with ASD can vary greatly and may change over time. While some individuals with ASD can lead independent lives, others have more severe challenges and need ongoing care and assistance.

Many individuals with autism also experience additional conditions, such as epilepsy, depression, anxiety, and attention deficit hyperactivity disorder (ADHD). They may also exhibit challenging behaviors like sleep disturbances and self-injury.

Individuals with autism exhibit a diverse range of intellectual functioning, varying from profound impairment to exceptionally high levels.

It’s estimated that globally, approximately 1 in 100 children is diagnosed with autism. However, the prevalence of autism in many low- and middle-income countries remains unknown.

2 April is observed as the World Autism Awareness Day, and so the day was observed at Kaja Throm, Thimphu, aiming to raise awareness about the prevalence of ASD in society, and to enhance visibility for individuals with autism.

The Kaja Throm and the Memorial Chorten were lit up with the blue colour as the colour is the symbol of autism, representing the complexity and diversity of the autism spectrum. The blue colour in particular is associated with a feel of calm and acceptance of the people with autism, in an otherwise loud and busy world for those on spectrum.

The event this year was funded by Save the Children, Country Office, and Bhutan Foundation, with support from the Project DANTAK and Thimphu Kaja Throm.