Help for autistic kids a long way off

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