Young researcher looking at perceptions of Down Syndrome in young children

A young researcher is looking at how young children perceive people with Down Syndrome.  Seeing this young lady's research makes me excited that we have a new generation of researchers and scientists that want to support and educate about Down Syndrome.  How exciting!

Please enjoy this story about Sayoni Saha and her innovative research.

Researcher, 17, conducts Down syndrome study

By COURTNEY PERKES / THE ORANGE COUNTY REGISTER

The young researcher smiles warmly at a teenage girl with Down syndrome, inviting her to a pretend birthday party that the researcher has spent two years meticulously planning.

The video from inside a UC Irvine research lab captures two other guests – dolls, wearing the same light blue outfits with matching brunette ponytails. But one of the dolls has so-called typical features, while the other has the features of Down syndrome.

In an animated voice, Sayoni Saha asks the girl to feed the dolls bites of Play-Doh cake and wipe their faces clean. Next, she asks a series of questions about which doll is the prettiest, the smartest, the most popular. Which doll does the girl like best?

The girl picks up both dolls for a closer look before choosing the typical doll for the majority of positive traits.

"She's loving and caring," the girl says of why the typical doll has more friends.

Such questions of self-concept in children with Down syndrome have never been studied before, according to Eric Doran, manager of the Down Syndrome Program at UCI Medical Center in Orange.

But even more remarkable, is that Saha, the researcher, is 17, the same age as some of her study participants.

"This is graduate student level work, and she's doing it in high school," Doran said.

This week, Saha, a senior at Whitney High in Cerritos, will travel to Washington, D.C., as one of 40 finalists in the prestigious Intel Science Talent Search competition, which has produced future winners of the Nobel Prize and National Medals of Science. She will present her project, "A doll that looks like me: A study of self-concept in children with Down syndrome." She spent more than 300 hours over three years working on the project.

"It's important to recognize these kids are capable of making self-appraisals and judgments about themselves," Saha said.

At 14, Saha became the youngest intern in the Down syndrome program, which largely focuses on medical research, particularly the increased risk of developing Alzheimer's disease. She started helping with clinical trials, but soon came up with her own idea for a behavioral study.

In a magazine, she had seen dolls with the features of Down syndrome – almond eyes, a flatter nose and even a spread between the big toe and the other toes. She wondered how the children she was working with would feel about them.

UCI doctors and staff, who were busy with their own research, volunteered their time to help Saha embark on her idea.

"The challenge for us was she had a passion for research and interest in a topic we knew nothing about," Doran said. "We felt compelled to try to help her."

Saha applied for university funding, receiving about $6,000 for the project. She met with a psychologist to help best phrase the questions. She had to arrange for a special order of dolls from their European manufacturer, so they would be the same size with the same hairstyles and outfits.

Finally, she started her research last summer by staging the pretend birthday party scenario for 41 children, ages 4 to 17. Girls were given girl dolls, while boys played with the set of boy dolls.

"It never felt like work," Saha said. "It was a lot of fun. It wasn't just analyzing data."

Some children were quite aware of the differences between the dolls' appearance. Saha recalled one girl who, when asked which doll has the most friends, pointed to the typical doll. She said that was because the other doll has Down syndrome. Other participants never said the name of their condition, but mentioned that the Down syndrome doll was teased.

"It was definitely very hard for me to hear," Saha said. "I'd always seen these kids as being extremely optimistic and happy and some of the sweetest people I'd ever met. It was hard."

The study is ongoing, but preliminary results found that the participants associated the most positive attributes with the typical doll and showed an overwhelming preference for that doll. Close to half of the children identified that they looked most like the Down syndrome doll rather than the typical doll. Saha's results will eventually be submitted to a journal for possible publication.

Linda Beutel's 14-year-old daughter, Elizabeth, most identified with the typical doll during the session. At home, she enjoys playing with American Girl dolls with her younger sister.

"I saw it as very interesting that she didn't see herself as looking like the doll with Down syndrome," Beutel said. "That's not how she perceives herself. She perceives herself like everyone else and looking like everyone else."

Beutel, who lives in Irvine, said Saha easily developed a warm rapport with her daughter.

"I found it fascinating that a high school girl was putting the study together," she said. "Her maturity and thinking it through was just really impressive to me."

As a finalist, Saha has already won an $8,500 scholarship and will compete for up to $100,000. The top prize will be announced Tuesday.

Saha, who missed one question on the SAT, has applied to Harvard University and a number of other Ivy League schools.

Saha's biology teacher, Aileen Perry, described Saha as inquisitive, articulate and humble.

"She's just impressive as a person and as a scientist," Perry said. "I'm really excited to see where she's going to go."

Saha was born in India, but lived in Singapore until she was 11. She's the only child of a telecommunications executive and an accountant. She plays the viola in the Orange County Youth Symphony. She's also active in speech and debate as well as Model UN. She averages about four hours of sleep a night.

So which doll does Saha like best? The Down syndrome doll or the typical doll?

"There's no way I could decide," she said. "I guess I would be a data point I would have to throw out."

For more information about Down syndrome research in development and aging at UC Irvine and Children's Hospital of Orange County, call 714-456-8443.

Contact the writer: Twitter: @cperkes 714-796-3686 or cperkes@ocregister.com

Be gentle.