Autism day: A global conundrum?

Photo credit: http://www.iloveachildwithautism.com/LongTshirts.html


The Jakarta Post

Benny YP Siahaan, Jakarta | Opinion | Tue, April 02 2013, 11:36 AM

Paper Edition | Page: 7

What would go through your mind if you were told by your doctor that your child was autistic? In my case, it was the end of the world when our daughter was diagnosed with autism. The question of “why us?” lingered for years, but as the French say, c’est la vie (such is life), and life must go on.

Since 2008 the United Nations has dedicated every April 2 to autism with the intention of increasing global awareness and recognition of children with autism.


Year after year, autism cases have grown. Now autism is considered like a pandemic, with no country immune to it.

According to a March 2012 report by the US Department of Health and Human Services’ Centers for Disease Control and Prevention, one in 88 American children is diagnosed with autism, making it a national health emergency.

Unlike the US, Indonesia has no reliable data on autism cases. “If 10 years ago it was estimated that the number of people with autism was one per 5000 children, now it has increased to one per 500 children,” said Melly Budiman, a psychiatrist and chairperson of Yayasan Autisma Indonesia (YAI), in 2000.

According to one estimate that surveyed around 120 countries, the current prevalence level of autism is alarming. Indonesia has 476,905 cases; China 2,597,695 cases; India 2,130,141 cases; the Philippines 172,483 cases; and Thailand 129,731 cases. Interestingly, the worldwide increase of the disorder remains unexplained.

Worse, according to the World Health Organization (WHO), policymakers and public health experts have turned a blind eye to the condition, particularly in low and middle-income countries.

Consequently, children and families in need in those countries often have poor access to services and do not receive adequate treatment and care.

Although there is no widely accepted definition of autism, it is generally understood that autism is a complex neurodevelopment disorder that typically lasts throughout a person’s lifetime.

The disorder is characterized by varying degrees of impairment in communication skills and social abilities and the symptoms range from mild to severe. But many believe that early intervention may make a big difference.

As a father with my only child diagnosed with autism, these global efforts to raise awareness are a relief, although I do not know when awareness will be translated into action aimed at seriously dealing with this disorder and its impact on Indonesia.

In Indonesia, raising children with autism is not an easy task for families. I have had to send my daughter to Surabaya with her grandmother for her education and treatment since I cannot afford the same kind of treatment and education in Jakarta with my meager civil servant salary and a small amount of savings after working abroad.

Autism treatment and education is ridiculously expensive in big city like Jakarta. I have to pay Rp 250,000 (US$25.77) per session for speech therapy (one of therapies that my child should undergo) in Jakarta while the same treatment costs Rp 75,000 per session in Surabaya. Consequently, myself and (mostly) my wife have to find time and resources to see our daughter as much as we can to ensure that she is in a good condition, which is also not cheap.

Being separated is also quite difficult for a family, particularly when your child has special needs. The situation is complicated as my office does not have a branch in Surabaya. Many stories reveal that families have had to relocate, mortgage or even sell their properties for the betterment of their autistic child. We have also heard of divorces due to the difficult situation.

It is suspected that the high price of autism treatment, care and education in Indonesia is due to limited human resources, particularly with both medical practitioners and specialized therapists and teachers.

If you open the website of Indonesian autism organizations like YAI, the autism centers and medical practitioners mentioned there are limited in number and are mostly concentrated in the big cities.

The level of autism awareness varies from country to country. In most countries, however, parents have always been pioneering awareness campaigns and interventions. Indonesia is no exception.

Many centers for children with autism in Indonesia were initially established due to the interests of the family in ensuring the survival of their offspring.

I have heard stories that many of so-called therapists and teachers, even parents in those institutions in their early days, including in my child’s school, were recruited without or with limited knowledge of autism.

But as time passed, they developed more expertise under the supervision of medical practitioners hired by the parents.

Hence, greater efforts in advocacy, awareness, research and human resource development are compulsory. In this regard, government intervention on the autism issue is imperative if Indonesia is serious about dealing with this global phenomenon.

Intervention could take the form of establishing more inclusive schools for children with autism and formal programs in universities or academies for educators and therapists in order to better handle autistic children in Indonesia.

More government health centers that provide services to children with autism and medical research on the disorder are also required.

Since no country or family is immune to autism, all members of society should not wait until our children are affected before we act. As Mark Roithmayr, the president of Autism Speaks, the world’s largest autism advocacy organization, suggests, “we must aggressively invest in research and develop a comprehensive national action plan that coordinates efforts between the public and private sectors”.

At the international level, with autism now considered a health crisis that knows no geographic or political boundaries, it warrants an immediate global response that Indonesia should do what it can to reinforce.

The writer is a foreign service officer. The views expressed are his own.