READi lab – 91̽News /news Wed, 21 Oct 2015 17:20:07 +0000 en-US hourly 1 https://wordpress.org/?v=6.9.4 91̽autism expert helped shape new ‘Sesame Street’ initiative /news/2015/10/21/uw-autism-expert-helped-shape-new-sesame-street-initiative/ Wed, 21 Oct 2015 15:51:41 +0000 /news/?p=39441
“Sesame Street” character Abby Cadabby, right, is part of the new See Amazing in All Children campaign. Photo: Jesse Grant, TM and © 2015 Sesame Workshop. All rights reserved

During its almost half-century on television, “Sesame Street” has tackled thorny issues ranging from divorce to death, food insecurity and parental incarceration.

The show is now turning its attention to autism, and a 91̽ expert played a pivotal role in the effort.

, director of the UW’s Lab, helped “Sesame Street” develop content for its initiative, which launches today (Oct. 21). Stone thinks the project will promote broader awareness of autism, which impacts an estimated children in the U.S.

“This puts autism in a normalized community context,” she said. “I think there will be more acceptance and recognition, and less fear of the unknown, if people understand more about what autism is.”

The initiative will provide aimed at helping parents and caregivers of children with autism deal with everyday activities such as getting dressed and playing with other children. The effort includes a free iPad app, instructional cards and digital and printed storybooks featuring “Sesame Street” Muppets Elmo and Abby Cadabby and a new character named Julia who has autism. A social media campaign using the hashtag #seeamazing will encourage parents to share stories about their children’s abilities.

“We’re trying to convey that children share lots of things,” said Jeanette Betancourt, “Sesame Street” senior vice president for U.S. social impact. “They want to play together. They want to have friends. They want to be loved.

“There may be differences, but our hope is that we’re connecting children with autism with the general community and creating better understanding.”

The initiative includes a free iPad app, instructional cards and digital and printed storybooks. Photo: Jesse Grant, TM and © 2015 Sesame Workshop. All rights reserved

Stone wrote a background paper about autism in 2010 with at Vanderbilt University that helped “Sesame Street” executives determine whether to proceed with the campaign. Later, Stone and 11 other advisory board members from autism organizations and universities around the country reviewed materials as they were being developed.

“Wendy has been an amazing resource for us,” Bentancourt said.

Stone’s role also involved making recommendations about what types of materials might be helpful and how to present autistic behaviors in an accurate way that neither stereotypes nor sugarcoats the realities of the disorder.

The idea of creating a live Muppet with autism was floated early on, Stone said, but she recommended against it. It would be difficult to portray autism correctly, she said, since the disorder is more often characterized by the absence of expected behaviors rather than the ones it is typically associated with, such as hand-flapping and rocking.

“I thought there was a danger of it focusing more on the negative stereotypical behavior,” Stone said.

Instead, the Julia character was incorporated into the storybooks, where she talks with her friends Elmo and Abby about how she is bothered by certain noises and might be paying attention even though she has difficulty making eye contact. The materials impressed Stone.

“They’re just so well done,” she said. “They explain things in a way that’s relatable to kids and adults and normalizes autism.”

Betancourt said the initiative grew out of demand from the autism community and from “Sesame Street” hearing repeatedly from parents that their children with autism felt a comforting connection with the show’s Muppets. But there were few resources available that emphasized the commonalities children with autism share with other children, Betancourt said, so “Sesame Street” decided to take on the issue.

The show’s producers conducted research with educators and service providers who work with children with autism, and with families who have children with autism as well as those with typically developing. They found that educators and service providers were hungry for information on how to better work with children with autism, Betancourt said, and that families with typically developing children often did not know how to approach parents of kids with autism.

“They felt uncomfortable because they didn’t know which questions to ask or how to connect,” she said.

The content will not yet air on the television show, but a “Sesame Street” spokesperson said it may in the future. In the meantime, Stone hopes the initiative will help reduce the stigma and isolation that affects many children with autism and their families.

“People know the word autism, but I think they’re still scared of interacting with a parent of a kid with autism, or inviting them for a play date,” she said. “This will provide an in-depth explanation in a ‘Sesame Street’ way, which is very positive and accepting. I think it could be very, very powerful.”

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$3.9 million project will identify, treat Washington state toddlers at risk for autism /news/2015/01/23/3-9-million-project-will-identify-treat-washington-state-toddlers-at-risk-for-autism/ Fri, 23 Jan 2015 18:59:28 +0000 /news/?p=35331 Early detection can make a world of difference for toddlers with autism, but many children do not get diagnosed until they’re at least 4 years old.

As a result, they often don’t get specialized services during the critical period up to age 3 that can greatly improve their skills and behavior.

Staged photo of clinician working with child. Photo: READi Lab

A new project at the 91̽ aims to address that delay and ensure that children with autism are identified and helped early enough to prevent problems later on. The five-year, $3.9 million initiative is being carried out by the UW’s (READi) Lab and will begin early this spring.

The project is being implemented in four Washington counties — Skagit, Lewis, Spokane and Yakima — with high numbers of Latino children, who tend to get diagnosed with autism later than others. The initiative is expected to result in earlier, autism-specialized treatment for families statewide.

Parents arriving at a doctor’s office for their child’s 18-month checkup will get tablets loaded with a set of screening questions for autism in toddlers. The questions ask about specific behaviors and situations — for example, whether the child gets upset by everyday noises, plays make-believe and is interested in other children.

Project leaders hope to catch many more children at risk for autism even before a formal diagnosis is made. Lead researcher , a 91̽professor of psychology, said while Washington has been a leader in developing innovative programs for identifying children with special needs, the national health care system’s approach to managing those children isn’t working.

“We’re stuck with this model where a child needs to get a diagnosis before she or he can get specialized services, but there are such long waiting lists for a diagnosis that kids age out of the birth-to-3 system, which results in a lost opportunity,” said Stone.

An estimated one in 68 children is currently with autism spectrum disorder, characterized by delays in social interaction and communication, and restricted, repetitive behaviors and interests. The American Academy of Pediatrics recommends all children be screened for autism at 18 months.

Take a of the READi lab and learn more about its work.

But not all pediatricians follow that practice, Stone said, leaving many children undiagnosed for months or years while parents grasp for answers.

“It’s very stressful,” she said. “Imagine you’re worried about your child having autism and how they’re interacting with you, and you can’t get an answer about what’s going on. It’s a period of uncertainty and frustration.”

Even when children are finally diagnosed, it can be difficult to find an early intervention provider with expertise in autism. Generic interventions don’t necessarily address the specific challenges of children with autism.

“If you don’t attend to the social deficit issues, they can get worse,” said , the project’s manager and a 91̽research scientist. “It’s important to act on the early signs and symptoms of autism.”

The standard screening process involves a checklist with 20 questions that parents can answer. If a child screens positive, the physician is expected to ask a series of follow-up questions. But that often doesn’t happen, Stone said, since pediatricians are often pressed for time.

To streamline the process, the UW’s is developing a Web-based version of the screening that incorporates the follow-up questions. Toddlers who screen positive will be quickly referred to local early intervention programs, where they will receive additional . An off-site psychologist will work with those programs through telemedicine technology to provide guidance and interpret screening results.

The project is also promoting the use of a simple play-based intervention that begins with imitating a child’s actions with toys. The adult then models a slightly different action and encourages the child to mimic it. It’s a fun approach that early-intervention providers can use and coach parents to do the same with their own children. The intervention has been to improve social and language skills, and provides a tangible way parents can help.

“It can really empower parents,” Stone said. “It builds interactions, and the parents feel so much more connected with the kids.”

The project is one of 12 being funded by the National Institute of Mental Health to create innovative service delivery models for children, youth and adults with autism spectrum disorder. The grants were last September.

The 91̽initiative will require physicians and service providers to attend a training workshop, distribute recruitment materials to parents and complete numerous checklists. Stone acknowledges that the effort asks a great deal of participants. But there’s much at stake for toddlers with autism, she points out.

“This project has important implications for health care for these kids,” she said. “Autism just doesn’t fit that medical model where you get a diagnosis and there’s treatment for it. Because often, you can’t get to the diagnosis part.”

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