The word autism doesn’t exist in the Khmer language, but starting from when Chim* was a toddler, his parents understood that he was different from his older sister. He refused to be touched or make eye contact, and he hit himself repeatedly when agitated or bored.
He is now a long-limbed 11-year-old, just beginning to grow taller than his mother, who is 57 and still cradles her son against her body to help him manage the stairs or find his seat. After two years of sensory therapy, he can play with other children and meet the gaze of those around him, but because he is severely autistic he will never learn to speak or be able to care for himself independently.
Yesterday marked the final day of International Autism Awareness Month, but the autistic community in Cambodia remains largely unrecognised and under-served. Public schools have no programs or teachers trained to care for autistic children’s specific needs, and the handful of private schools for disability are underfunded and understaffed, experts say. There is only one hospital-level centre for autism therapy in the Kingdom.
While health services in Cambodia lag well behind international standards, care for intellectually disabled children is plagued by a confluence of unique challenges.
Cambodia allocates just 1 per cent of its health care budget to mental health. This, combined with deficits in education, has cast autism care into a state of abject neglect.
Meanwhile, the number of children born with autism worldwide continues to increase dramatically, including in the Kingdom.
“A decade back, we didn’t see any autism in our sector. Now we see it increasing each year – over the past two to three years there [has been] a sudden spike all over the world,” said Dr J Bhoomikumar, a child psychologist and the director of the Centre for Child and Adolescent Mental Health (CCAMH) at Chey Chumneas Hospital in Kandal province, where Chim receives his therapy.
Bhoomikumar said researchers were yet to understand exactly what is behind the increase, though he suggested enhanced global awareness could be a key contributor.
Every day, three to five new patients are diagnosed with autism at CCAMH, which runs primarily on a foreign aid-provided budget of $100,000 a year. The staff of 20 treats about 7,000 children annually, mostly from Phnom Penh – although poor children from rural areas are transported weekly by affiliated NGOs to the centre and are not required to pay the 5,000 riel ($1.25) treatment fee.
For parents of children with schizophrenia, epilepsy, Down syndrome, cerebral palsy and autism – and more often than not, a comorbidity of these disorders – the centre is their main hope and last resort.
“Parents are exhausted when they come,” Bhoomikumar explained. Most parents first seek out traditional healers and Buddhist monks to treat their intellectually disabled children. Many women believe their child’s disability is the result of karmic retribution due to a wrongdoing on the part of the child or mother in a past life.
Children are splashed with holy water, and infants who have epileptic fits (a common comorbidity of autism) are traditionally branded with a hot needle along their abdomens. The shame of having a “different” child also leads families to segregate themselves from their community, or neglect their child out of frustration or a lack of resources, Bhoomikumar explained.
“When people come they think there is a magic medicine, an injection, and your child will be normal,” he said.
It often takes many sessions to explain that autism “is a lifelong affair”, and there is no easy remedy, he added. Because of this, CCAMH teaches parents how to be a co-therapist so that they can continue care at home. However, CCAMH psychiatrists skirt the term “autism” with families, in favour of discussing symptoms and solutions.
Instead of “autism”, therapists use the Khmer word for “triangle” to describe the “cardinal attributes” of autism: abnormal play, loss of language skills and lack of social communication.
Just as awareness of autism is lacking in Cambodia, so too is the treatment available to those who live with it. While an American child with autism would be entitled to 40 hours of therapy per week, in Cambodia children like Chim at most receive an hour a week of treatment.
Access is equally limited in schools, where parents report autistic students are regularly rejected from classrooms, according to Chea.
“They say the teacher told them ‘please take your child away from my school because I could not work with him or with her’,” he recalled.
Minister of Education Hang Chuon Naron confirmed yesterday that there was no training to help educators teach disabled students.
“Sometimes they are gifted children and with training . . . they can do something extraordinary,” he said, while explaining in the same breath that there was no budget to provide special education classes for disabled students.
Cambodia’s Law on the Protection and Rights of People with Disabilities requires the government to provide rehabilitation to ensure those with disabilities can “participate fully and equally in activities within society”.
“The government has a really nice policy but there is no budget to implement the policy,” said Hun Touch, the founder of the Rabbit School, one of Cambodia’s few educational institutions dedicated to disabled children.
Unlike CCAMH, where many patients come from wealthier families, parents of the 162 disabled children who attend the Rabbit School for three to four hours each day struggle to afford the $2 daily tuition fee. For this large body of students, there are just 13 teachers.
“The challenge is that the parents misunderstand disability. [They think] ‘why would I send a child with disability to school if they cannot learn?’”
“We are not able to train a child to become a doctor, or a good worker, but at least we can help them to be more independent,” Touch said. Children without basic independence, like the ability to use the toilet or feed themselves, he explained, are often subject to violence.
According to a 2012 report by the World Health Organization, children with mental or intellectual disability are 4.6 times more at-risk for sexual violence.
“For disabled or autistic people, there is a lack of care, and the authorities are not preventing crimes against them,” said Ngin Saorath, director of the Cambodia Disabled People’s Organization (CDPO). “Their well-being is not important to their community.”
Saorath explained that when disabled women report they are raped, for example, the matter is settled between the perpetrator and the family, not in court.
Despite the dire current state of affairs, however, caregivers are beginning to ramp up their efforts. At the Rabbit School, Touch hopes to triple the size of the staff and the student body by 2017.
Meanwhile, earlier this April, CCAMH founded the Cambodian Intellectual Disability and Autism Network, a collective of 17 NGOs throughout the Kingdom.
While a constitution has yet to be drawn up, Chea hopes the network will build stronger community support for autistic children as they grow into adults.
For Chim, this network begins with a yellow “passport” folder compiled by CCAMH detailing the limitations he has as a child with autism. His therapist hopes those who read it will glean some understanding his disability, even if they don’t recognise its name.
*Name has been changed to protect the child’s identity