Stories

A Mother's Story Teaches Others About Autism

From Jakarta Globe

By Ade Mariyati
3rd April 2011

Like most young mothers, Gayatri Pamoedji was overjoyed when she had her first baby in 1990. However, when her son, Ananda, was 9 months old, she started to notice that he didn't behave like other babies.

"He did not respond when I held him, he would stare at one point and stayed still for a while, and he liked watching a fan rotating β€” anything that moved repeatedly and monotonously," she said. "That was when I knew something was not right."

The odd behavior continued, leading to Ananda finally being diagnosed with autism, a complex developmental disorder that normally appears before a child is 3 years old and is more commonly found in boys than girls.

Children with autism have difficulties in communicating and social interaction, and tend to spend a lot of time alone, as if "they live in their own world," Gayatri said.

Her experiences with Ananda are not unusual. Saturday is World Autism Awareness Day, an event meant to highlight the disorder as a growing global health crisis. In 2009, the Ministry of Health in Jakarta said that one in every 150 children in Indonesia is born with autism and that the number of children diagnosed with the disorder is continuing to increase.

But even with so many children being diagnosed with autism, there is still very little awareness about this disorder in Indonesian society.

Gayatri, who holds a master's degree in health counseling from Curtin University of Technology in Perth, Australia, had to do her own research on the condition and what she could do to help her son. Over the years, Gayatri learned how to cope with the most common problems faced by autistic children.

But she acknowledges that there were times in her life when she would just ask herself, "Why me?

"I felt that I had looked after myself well when I was pregnant with Ananda. I could not stop wondering how those mothers who smoked and drank had healthier babies," she said.

Gayatri learned that many parents of autistic children go through various stages before they finally accept their child's condition, such as denial and depression.

"I was there, but I'm over it now," she said, adding that successfully raising an autistic child mainly depends on three factors β€” accurate diagnosis, good education and strong support.

With the full support of those around him, Ananda, who is now 21, has proven that people with autism can lead full and independent lives. He is set to graduate from a college in Perth in July, where he is studying to become a commercial chef.

"It has been a long process, but I feel grateful. I had confidence that my son could become a productive member of society," Gayatri said.

Today, one of Gayatri's goals is to share her experiences dealing with the disorder with other parents and educators in Indonesia.
In 2004, Gayatri founded People Concerned With Autism Indonesia (MPATI), a nonprofit foundation committed to educating people about the condition and creating a better future for children with autism in this country.

One of MPATI's missions, Gayatri said, is to spread awareness about the disorder and to convince people, especially parents of autistic children, that their children can learn to live independently.

"There are misunderstandings about the disorder, and this often leaves a lot of parents so worried that they just keep their autistic children away from society," she said.

Some misunderstandings, she said, may stem from people mistakenly associating autism with mental retardation. In some parts of Sumatra, she said, a lot of people still believe that children with autism are the victims of black magic.

She added that some parents "over-diagnose" their children, believing their child has the condition without really understanding what it entails.

"When they see that their baby does not, say, respond to eye contact, they jump to the conclusion that their child is autistic," she said. "Worse, there have been parents who thought their teens were autistic simply because they didn't seem to care about their surroundings."

As part of the commemoration of Autism Awareness Day, MPATI is launching "Anak Autis Sahabat Kita Semua" ("Autistic Children Are Our Friends"), the first comic book on autism in Indonesia. The comic describes the stages typically gone through by families with autistic children. The story is told through the eyes of a little boy whose brother has the disorder.

"I really hope that this comic will be able to provide Indonesian families with easy-to-digest information on autism and the treatment needed to help autistic children become more independent," Gayatri said.

She has previously published two other books on autism: "Meniti Pelangi" ("Walking on the Rainbow"), a story about bringing up her own autistic child, and "200 Questions and Answers on Autism," a collection of answers to frequently asked questions about the condition.

MPATI also released an autism awareness video in 2005, which it distributed for free in parts of Indonesia, Singapore, Malaysia and Australia.

"Everything is copyrighted. However, I don't mind if people make copies and share them with their friends and families as long as it is for a good cause," Gayatri said.

"We sincerely hope that everything we do here will be able to boost the confidence of these children with autism and that it will open up ways for them to live independently," she said.

For more information, contact MPATI:
E-mail: yayasan_mpati@yahoo.com
Tel: 0813 8074 1898
Blog: gayatri-autisme.com

Web site: autismeindonesia.org