Autism trainer takes knowledge to India

In many ways, the autism training Erin Quarnstrom did in India in early December was not very different from what she does here.

The people she worked with in New Delhi had some knowledge of autism, of their children's abilities and needs, and of the issues with which they needed help.

Quarnstrom and four other trainers worked with 30 people in the training – teachers, directors of autism centers, and parents of autistic children. They were from all over India, and from Bangladesh and Nepal.

Quarnstrom is part of an autism team in the Champaign school district that helps teachers work better with autistic students. She also provides training locally through The Autism Program, a statewide initiative that provides services based on research and the best practices for educating autistic children. She traveled to India with AACTION (Autism Awareness Campaign Through International Organizations Networking), a nonprofit organization that provides free medical, educational and diagnostic training to parents and educators.

Even though the training and the issues it addressed were familiar to Quarnstrom, the experience was life-changing.

"The participants were the most welcoming, friendly group of people I've ever been around," Quarnstrom said. "These people worked so hard. They would come to you and say, 'Can we talk before we start? Can we talk at lunch?' They just wanted more information and someone to problem-solve with them."

The participants were mostly parents who have created programs for autistic children in India because they saw the need for their own children. One woman from Nepal founded the only autism center in her country.

The main difference from the United States, Quarnstrom said, is there is no government oversight, requirements or standards in India. There also is no government funding, nor are there specialists such as speech or occupational therapists.

"They are doing a lot of things we do because we have to by law. They're doing it because they believe it's what's best for kids," Quarnstrom said. "They had some really great programming in place already."

She was particularly impressed by vocational education for older students. The younger children all did crafts, and the young adults made scarves, folders and jewelry that were sold in the community.

"Crafts and artistic ability are really respected in their culture," Quarnstrom said, adding those skills are more marketable in India than in the U.S.

She and the other trainers did the same five-day workshop they do in the U.S. They start with an empty classroom and help the participants design the room and create schedules, activities and materials to help autistic students with communication, academics and social skills. In doing so, there is a heavy emphasis on visual organization and cues, as visual skills are usually a strength of children with autism.

Quarnstrom and the other trainers also worked individually with students later in the week.

The trip was the third time AACTION sent trainers to India, but this was a more in-depth, hands-on training, and the first time it included autistic children, said Christopher Flint, president and founder of AACTION.

"The teachers got to practice working with kids and get feedback and get some more hands-on experience setting up the programs," Flint said. "It was amazing. ... We were able to learn quite a bit from them about their work with kids with autism, and they're really eager to get more information. It's a great collaboration in that way."

Quarnstrom worked with a 12-year-old boy in India whose mother's main concern was that he was dependent on having someone tell him what to do. Quarnstrom worked on creating written schedules and lists that would prompt him to do some activities without relying on an adult to tell him what to do next.

The boy's mother wanted him to be able to make a sandwich on his own at home and to be able to entertain himself with a card game. Quarnstrom created visual instructions for him to make his own lunch, and a system for the mother to have the food close at hand so her son could get to it easily. Quarnstrom also used a mat to show the boy where to put the cards if he wanted to play Solitaire.

The trainers learned from their parents what it's like to have a child with autism in a different culture. They were told by the woman from Nepal, who founded the autism center in her country, that many of her relatives believe her son has autism because of evil things she'd done in a past life.

"I feel like I met so many strong, brave people in this training," Quarnstrom said.

India is "still pretty far behind (the U.S.) as far as awareness and treatment of autism," Flint said, but it is far ahead of many of the countries surrounding it, which are at the very beginning stages of providing services for autistic children.

"In most developing countries, in a lot of places around the world, very few individuals are getting any kinds of services. There are not enough trained professionals working with these kids," he said. "Having well-trained professionals working with these kids makes all the difference in their lives."

One goal of the training is to help build a model program in India for others to visit and to have the teachers there become trainers for others.

"India is such a huge country," Flint said. "There's no way any organization outside of the country can do all that training and work with all the teachers. We need organizations on the ground over there where they can do training and share expertise."

The trainers also tried to bring a little of America with them by teaching the children in cricket-crazy India how to play baseball. The game helped them learn about waiting and taking turns, and it showed the adults how children with and without autism could play together, Quarnstrom said.

"Everyone I met in India had such pride for where they were from and wouldn't want to live anywhere else," she said. "But at the same time, they were very thankful for us and our presence and getting information that is not readily available in their country."

Some of the parents asked the trainers to come to Bangladesh or Nepal and do a training workshop there.

"Their devotion to working with these kids ... I felt inspired by them and renewed in my passion for working with kids with autism," Quarnstrom said. "And when you have parents begging you to come back and come to their country – as long as the organization will let me, I don't see how I can not go back."

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