Washington researcher helps shape character with autism

Feb 10 • Newsroom • 905 Views • Comments Off on Washington researcher helps shape character with autism

By Jeffrey Rindskopf

Julia is a joyful young girl who enjoys singing and playing with her friends Elmo and Abby. She is also sensitive to certain noises and flaps her hands in the air when she is excited. Julia has autism.

As the latest creation from Sesame Workshop, the international non-profit organization behind Sesame Street, Julia hasn’t yet appeared in the beloved educational TV program. She currently exists as a digital character in the organization’s new See Amazing in All Children autism initiative. It took work and delicacy to bring Julia to life.

“We went through a comprehensive research and development process to get feedback from children, parents, providers and experts,” says Dr. Jeanette Betancourt, the Senior Vice President of US Social Impact at Sesame Workshop.

Wendy Stone, director of the UW’s Research in Early Autism Detection and Intervention Lab, saw firsthand the care that went into creating the initiative and creating Julia. Her involvement with the long in-the-making project began in 2008.

“They wanted a white paper on how Sesame Street could improve the lives of children with autism,” Stone explains. “They wanted to provide any unique help or materials that weren’t available from other sources in the community.”

Stone and a colleague developed a paper per their request, describing the prevalence of autism, the needs of those living with the disorder, as well as virtually everything else known about ASD at the time. Most importantly, the paper addressed how Sesame Street might be able to help.

“Nothing really happened after that, as far as I was aware,” Stone says.

But she had become a part of Sesame Workshop’s research and development process. For the sake of the initiative to take on autism, they convened 14-partner organizations and far more autism experts to help.

In 2015, Stone was notified that that Sesame Street would be pursuing their autism initiative. The launch date was set for October 21.

“They’ve been really amazing to work with,” she says. “There were lots of gaps, and it was a long time coming, because Sesame Street really wanted to do it right. I so admire and appreciate them for that.”

Stone’s primary role in the process was to review materials for the initiative as they were developed and provide feedback, except for an in-person meeting of Sesame Workshop officials and autism experts such as herself.

“They asked all the advisers the same questions, but people within the autism field aren’t necessarily going to agree with each other,” she laughs. “I don’t know how they managed to finesse that and end up with their final result.”

The process was lengthy with many decisions, both in the format and the content of the initiative. A digital and print storybook is available, as well as a series of educational videos for parents and children to enjoy together.

As Sesame Street’s only character with autism, Julia presented quite a few difficulties. One single character, animated or otherwise, simply can’t encompass the entire spectrum of autism.

“We know that if you’ve seen one child with autism, you have only seen ONE child with autism,” Betancourt says. “While it would be impossible to represent the entire autism spectrum with one character, we seek to reduce the stigmas surrounding autism by representing the commonalties that all children share rather than their differences.”

According to her, Julia was consistently evolving during the development process, as both parents and experts like Stone pointed out anything that seemed disingenuous in the materials. Finally, they decided upon a 4-year-old whose special needs aren’t visible. Though she has some language skills, she has difficulty interacting but excels in certain areas. Her gender was chosen deliberately to refute the common misconception that only males have autism.

The decision to make Julia solely an animated character who exists only within the digital and print storybook caused some controversy during the development. Stone worried that a live-action puppet character could only reinforce stereotypes and present a visual image that wouldn’t be characteristic of autism.

“We created Julia as a digital character based on the advice that digital platforms are among the most popularly used resources within the autism community,” Betancourt explains.

Christina Barzare, whose seven-year-old daughter has autism, says she is torn by the portrayal of Julia.

“I would have liked to see her as a puppet,” she says. “Also, as it appears to me that Julia is higher functioning on the spectrum, I would have liked her to advocate for herself.”

Nonetheless, Barzare, who grew up watching Sesame Street just as her daughter does, has faith in Sesame Street’s delicate approach to complex issues other children’s shows don’t address, a major factor in the series’ continued success after more than 45 years on the air.

“I believe Sesame Street has always had a ‘See Amazing in All Children’ type of approach, they are just putting a name on it,” she says.

Stone expresses a similar sentiment, and says that she believes a program like Sesame Street has a unique opportunity to promote awareness.

“Kids are more open,” she says. “It’s about what you can change when you mold their developing brains. If they learn early on that being different is okay, I think they’ll benefit from it, and their lives will be enriched.”

Despite their admirable efforts, Sesame Street can’t take on every stigma about autism with one initiative or one character with autism.

“I don’t think people know the wide range of it, or how broad a spectrum it is,” says Stone. “I think what people really don’t know about are the individuals who have jobs and work and get married and have autism.”

Though the initiative launched in October, it’s far from over. Sesame Workshop continues to receive feedback from autism experts like Stone. They’re promoting the initiative using a #SeeAmazing campaign, encouraging parents and the public to share stories about their children with autism doing anything amazing. Betancourt hints about their hope to “expand Julia’s presence in the future.”

“We know there is a great need for resources that address ASD,” Betancourt adds, “and we know we can make a difference by using our beloved Sesame characters as furry ambassadors.” 

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