Jakarta Globe, Divyha Pridhnani, Jun 18, 2014
One in every 68 children in the United States is diagnosed with autism, showing a massive increase compared with 1985 when only one in 5,000 had the neurodevelopmental disorder.
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| Some of the people working to create greater awareness of autism. (Photo courtesy of Mpati) |
One in every 68 children in the United States is diagnosed with autism, showing a massive increase compared with 1985 when only one in 5,000 had the neurodevelopmental disorder.
With a lack
of reliable data, it is not known how many of Indonesia’s more than 76 million
children are suffering in silence. To make matters worst, autism is a rapidly
growing phenomenon, which is often ignored and stigmatized in this country.
Autism is
characterized by impaired social interaction, verbal and non-verbal
communication as well as restricted
and
repetitive behavior; which leads to children seemingly abnormal or odd to the
world.
“The major
cause of autism is still under research,” explains Dr. Meli Budhiman, a founder
of Yayasan Autisma Indonesia, one of the first organizations established in
1997 aimed at creating awareness of the disorder and also about the importance
of access to information about autism.
“However,
it has been found that the occurrence of this ‘brain-allergy’ is often spurred
by both a genetic predisposition and environmental factors such as exposure to
mercury, additives, other pollutants and more,” she said.
Meli also
explained that the core symptoms of autism should be noticeable prior to a
child’s third birthday.
Symptoms
include: a delay in two-way communication both through speech and body
language, extreme lack of interaction with the child’s surroundings such as
being unresponsive to being called by name, no eye-contact as well as showing
anxiety around people and living in their own fantasy worlds through isolation
and detachment.
Other
underlying symptoms may include aggression, pointing fingers to indicate desire
and also “stimming,” which refers to repetitive behaviors such as flapping,
rocking, stepping or vocal sounds.
“When these
symptoms are detected early, it is crucial to bring your child to a specialist
to receive the right diagnosis,” said the child psychologist with over 50
years’ experience. “Remember humans are social beings, it is better to be
mistaken about your worries rather than ignoring it altogether.”
Families
are often disheartened by a positive diagnosis, which involves long-term costs
and extensive therapy.
“Autistic
children should not feel like they are a burden to their families because
treatment can and should be done at home as well,” said Gayatri Pamoedji, who
helped establish Yayasan Masyarat Peduli Austis Indonesia (Mpati) in 2004. The
organization aims to educate parents and teachers of special needs children.
Mpati hopes
to eliminate financial status and a lack of information about the disorder as
excuses or barriers to autistic children getting treatment.
“We provide
free diagnosis in our center,” Gayatri said. “We also provide guidance videos,
educational manuals, counseling and unlimited training sessions for different
therapy methods such as applied behavior analysis, speech and occupational
therapy and more. Our committed volunteers also monitor the progress of the
child and the application of the training at home.”
“For your
child to improve, it requires knowledge, perseverance and love from their
support systems,” added Gayatri, a mother of an adult with autism.
Valencia
Mieke Randa, another mother with an 11-year-old autistic son, emphasized the
importance of a remedial home environment.
“If my son
couldn’t run as fast as the other kids in the phases of life, it is my
responsibility to pick him up and help him run the remaining distance,” she
said. “From being unable to speak a single word until the age of 5, my son is
now fluent English. From constantly shying away, my son performed on stage in a
crowded hall. From being incapable of expression, he speaks of being happy and
compliments me on my beauty. That is my reward.”
She added
that children’s support systems responsible for leading them to a normal life
include educators, friends and most importantly, society for understanding that
autistic children are special and merely late-bloomers struggling to adapt in
this confusing world.
“Understand
that autistic children have the same rights and deserve as much love as anybody
else. Please don’t ostracize them. They shouldn’t be bullied, joked about or
labeled as stupid,” said Gayatri, who also aims to eliminate the myths and
stigma attached to the disorder.
Meanwhile,
Dr. Meli said she observed a common tendency for families to feel guilty of
their child’s condition.
“There is
no shame or blame to give or receive for an autistic child,” she says. “Every
child’s personality differs, so does an autistic child. Therefore, any progress
will also depend on the individuals. Families and the society should refrain
from generalizing them. We must work towards awareness and eventually towards
acceptance.”
Every year,
YAI organizes the Walk for Autism to spread awareness. Last year’s march was a
huge success, with over a thousand supporters and 800 autistic children walking
for the cause. It has motivated the organization to aim for a higher turnout
this year with the help of volunteers.
Valencia
Mieke Randa also believes that when we encourage acceptance within ourselves
and our children, so will society.
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