Providing Hope to Families of Children With Autism

Jakarta Globe, Divyha Pridhnani, Jun 18, 2014

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.