Help for autistic kids a long way off

Simon Howland, Contributor, Jakarta

A major breakthrough in autism research may lead to early detection and prevention of the condition but more support is needed for those battling the problem in the field if the revelation is to benefit Indonesia.

Dr. Eric Courchesne and his team at the University of California discovered a biological development signaling the onset of autism; excessive growth of the brain in the first 12 months after birth. Courchesne released his findings at the inaugural World Autism conference in Melbourne in 2002.

Courchesne has identified a biological abnormality that precedes the clinical manifestation of autism. He is able to pinpoint the specific abnormality and determine when it occurs. This means it could be possible to detect the onset of autism in babies and provide effective intervention.

But one of the most significant findings since the discovery of autism in the 1940s is unlikely to benefit sufferers in Indonesia without increased support from government bodies.

Autism is a problem in Indonesia and with seriously limited resources available for increasing understanding of the problem and promoting education on the topic the future portends an up hill battle for the families and sufferers affected by the problem.

A conservative estimate by the American Academy of Pediatrics (AAP) here indicates that one in 1,000 children have autism and twice that number may have related disorders. It is feared the ratio may be as high as one in 300 in some areas and with at least one child being diagnosed with autism in Jakarta each day.

But in Indonesia a truly reliable figure is impossible to obtain due in part to insufficient public awareness of the affliction and in part due to the inability of the medical sector to accurately assess the extent of the problem. To date, there have been no specific reports or data compiled on autism in this country.

There do exist methods of treating autism in Indonesia.

According to psychologist Adriana Ginanjar, also the parent of a child suffering from a severe form of autism, a combination of behavioral, censorial and biomedical therapy has been relatively successful in combating autism.

The most popular method is the Lovaas technique designed by Californian psychologist Ivaan Lovaas. His Applied Behavioral Analysis (ABA) incorporates both a behavioral and psychological approach to the treatment of the disorder.

Adriana advises that the best time to treat autism is when the child is between one and a half and two years old.

The technique stresses reinforcement and rewards for expected, acceptable behavior and punishment for unexpected, disorderly behavior. The greatest advantage of this method is that it comes with a clear curriculum.

In Indonesia however, the ignorance of most general practitioners in the field of autism prevents the method being properly implemented.

Most Indonesian practitioners do not have enough understanding of autism from its effects and symptoms to the possible cures and treatments available. This is due in part to a lack of any suitable system of education or information sharing in relation to the disorder.

According to Adriana, media coverage of the issue helps to promote awareness and seminars are beginning to emerge to help inform and share information. But the government all but refuses to acknowledge the existence of the illness.

There exists no special centers for autism in Indonesia bar those in Jakarta, Yogyakarta and Bandung. And even should the family of an autistic child live in or near one of these centers it is likely they will not be able to afford treatment. With the vast majority of the population being denied access to specialized treatment of any kind certain alternatives have been devised as an alternative. These alternatives include homeopathy and massage therapy but even these are out of the reach of the poorest sufferers.

The problems faced by sufferers are further compounded by the limited access to education. Those suffering mild forms of the illness are able to attend schools if accompanied by a private tutor or minder. Again, way out of the league of most families. The special schools funded by the state and catering for retarded and mentally handicapped children are not suitable for autistic children.

With private therapy remaining the best alternative for the treatment of autism there is little hope for many sufferers. Adriana and Dr. Meli Budirman from Jakarta's MMC hospital are two individuals actively involved in the treatment of autism in Indonesia. Unless the government acknowledges the problem and helps people such as these in their efforts to provide treatment and education the problem will only get worse.

While the application of the treatment prescribed by Dr. Courchesne is still a long way away in Indonesia there are many alternatives available and affordable to the government of Indonesia to promote education and improve the lot of sufferers in this country.

I-BOX:

Yayasan Autisma Indonesia (Autism Foundation of Indonesia) Jl. Buncit Raya No. 55 South Jakarta tel: +62 21 797 1945 fax: +62 21 799 1355 e-mail: autism-indonesia@egroups.com