Bringing attention to autism

As part of the event, the memorial chorten and the clock tower square among others were  lit in blue, the colour for autism. 

Occasion: The family rejoiced when Ugyen was born.  He was the family’s first grandson, first son and the only brother to his sister.

Today, he is 11 years old and attends The Early Learning Centre thrice a week.

As he turned four, his family started noticing that Ugyen would not have eye contact and became sensitive to light and sound.  He was in his own world and remained fixed at a single activity for hours.

Ugyen was diagnosed with autism, a complex disorder of brain development characterised by difficulties in social interaction, communication and repetitive behaviour.

Doctors advised his family to be engaged with him day and night.  But the family was skeptic about his condition improving.

One evening when his mother Chimi could not find him and called his name, Ugyen responded softly for the first time.

“That was the turning point for my son in his responsive behaviour and a time when I became hopeful,” the mother said.

Chimi was narrating the story of her journey with her autistic son at the World Autism Awareness day that was observed in Thimphu yesterday.  The event was followed by a fund raising charity dinner.

Her Majesty the Gyaltsuen, who is the Royal patron of Ability Bhutan Society (ABS), graced the occasion.  HRH Princess Kesang Wangmo Wangchuck, ministers, members of parliament, members of Ability Bhutan Society, various stake holders, family members and children with autism attended the event to observe the day that was themed Employment: The Autism Advantage. As part of the event, the memorial chorten and the clock tower square among others were  lit in blue, the colour for autism.

Chimi said she is constantly told that her son has mild to moderate autism.

“Like any other mother, I too dare to dream and hope that one day my son will grow into a fully functional and capable man,” she said.

However, in the case of a 39-year-old mother, her 14 year-old autistic daughter’s condition deteriorated over the years. She initially went to kindergarten for two years and could walk with support.

The mother said her daughter used to recite nursery rhymes and communicate well. “But it’s been almost six months since she completely stopped talking and is bedridden,” the mother said. “I hear her voice only when she cries.”

However, the daughter communicates with the family members through writing.

It would have been difficult for the family to make ends meet if one of them left their jobs. So they found a caregiver, the mother said.

Changangkha LSS has nine autistic students in the “self-contained” class, which was initiated by one of the teachers, Chimi Lhamo. In 2006, the school had its lone autistic student, which increased to five in 2010.

“Nothing is more rewarding than seeing a smile on their faces and their eagerness to come to school,” she said.

Addressing those who had gathered to observe the day, Her Majesty the Gyaltsuen said that Bhutan has continued to work towards ensuring the rights of people living with special needs, to end prejudice, increase self-reliance, recognize unique talents and to continually reinforce a community that is inclusive and devoted to upholding the innate and equal dignity of all people.

“Let us persist in renewed efforts to ensure that children with disabilities grow to achieve their greatest potential, unobstructed by barriers and cared for by all in our society bound to common good, in which the character of our nation and people is centred, and remains a measure of true progress,” the Gyaltsuen said.

The Gyaltsuen also launched the Ability Bhutan Society Strategic Plan Document, and an animated video on autism awareness produced by ABS.

Parents of children with autism said, its important to come up with community based resource center or a rehabilitation center across the country to help parents and specially abled children to come together for resources and solutions.

Although a comprehensive study is yet to be done across the country, records with the health ministry show that Thimphu alone has more than 80 children living with autism. ABS centre is treating 47 of them.

Health minister Tandin Wangchuk said, until now the health ministry has not been able to design and focus appropriate interventions in the area given to its limited capacity.

“Dealing with autism does not lie in the hands of a single agency or family members of those diagnosed with autism,” Lyonpo said. “Let us all unite in taking forward autism as a common area of significance.”

Stressing on the theme, chairman of ABS and the chief election commissioner, Dasho Kuenzang Wangdi, said more than 80 percent of adults with autism are unemployed globally and this is true for Bhutan as well.

He said autistic people have heightened abilities in pattern recognition, logical reasoning and pay greater attention to details. These qualities suit them for employment in software testing, data entry, lab work and proofreading among others.

“As we observe this day, I call on the government, political parties, media, CSOs and the private sector to adopt inclusive employment policies in an effort to tap the potentiality of individuals with autism,” he said.

By Nirmala Pokhrel 

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