Pointing to harmful messaging, autism organization ends partnership with Sesame Workshop

An autism advocacy organization announced Monday that it is ending its partnership with Sesame Street in response to a multimedia campaign that the organization says is harmful to autistic people. 

The Autistic Self Advocacy Network said in a statement on its website that it “condemns Sesame Street’s decision to further stigma against autistic children and adults” through an autism-screening initiative developed with Autism Speaks, another autism organization that has previously stirred controversy with its messaging around the disorder.

Zoe Gross, director of operations for ASAN, told Current that her organization’s decision stems from resources previously developed by Autism Speaks and promoted as part of the campaign. Some of the resource materials designed for parents promote fear of autism rather than acceptance, Gross said, including advice that parents may experience stages of grief upon learning that their child is autistic.

“When someone finds out their kid is autistic, it’s a very scary landscape,” Gross said. “We want to teach them it’s okay, your kid loves you. They can live a normal life.”

Sesame Workshop launched its autism initiative, “See Amazing In All Children,” in 2015. It included the introduction of Julia, a young Muppet with autism, who began appearing on Sesame Street in 2017. Other characters often refer to Julia as doing things in a “Julia sort of way” as they educate viewers about autism. Both ASAN and Autism Speaks have been consultants on the initiative since its launch.

Autism Speaks announced in July that it was joining Sesame Workshop and the Ad Council to start a bilingual campaign featuring Julia to promote early screening of autism. The campaign includes PSAs, a “Screen for Autism” website developed by Autism Speaks and a toolkit for parents of children diagnosed with autism. The kit features information about symptoms of autism, how common it is and how families can respond to a diagnosis.

Sesame Workshop notified ASAN of the campaign prior to its launch, according to Gross. ASAN immediately conveyed concerns about the Autism Speaks resources in private discussions with Sesame Workshop, Gross said.

Gross points to a section in the kit that advises parents on dealing with a diagnosis. “You want your child to get better so badly that you may feel some of the stages commonly associated with grieving,” the kit says.

“It’s like you’ve experienced a loss by having an disabled child,” Gross said. “It’s a bunch of stuff that isn’t good for anyone to hear.”

The kit also tells parents that arguments between parents may arise not because they’re mad at each other but because “the autism … has you so upset and angry,” which ASAN says encourages parents to blame their autistic children. Additionally, the kit says following its advice will help both children and parents “get better,” which ASAN says depicts autism as a “terrible disease.”

ASAN said in its statement Monday that it had explained to Sesame Workshop “how these ideas harm autistic children and our families, and reinforce societal prejudice against autistic people.” Gross said Sesame Workshop acknowledged the concerns but proceeded with the campaign, prompting ASAN to end its relationship with Sesame. 

“Our initiative was developed in close consultation with over 250 organizations and experts across the autism community and we continue to work with a wide range of advisors and organizations to ensure that our resources meet the needs of families and promote acceptance and inclusion,” a Sesame Workshop spokesperson told Current.

An Autism Speaks spokesperson said in a statement to Current that the organization developed the toolkit and other resources with experts in the autism community, including people with autism. 

“Through our partnership with the Ad Council and the most recent public service campaign featuring Sesame Street’s Julia, we aim to empower parents with the tools they need to help their children lead their best possible lives,” the spokesperson said. 

Autism Speaks has at times had a rocky relationship with ASAN and the autism community. ASAN organized protests against the group in 2009 after an Autism Speaks campaign presented “autistic people as useless burdens on society, on our families and on the world at large,” ASAN said in a statement at the time. Videos from the campaign, which were shown at an Autism Speaks conference and on its website, included statements such as “I am autism. I will plot to rob you of your children and your dreams.” Autism Speaks eventually rescinded the campaign. 

In 2014, autism advocacy groups including ASAN, the Autism Women’s Network and Self Advocates Becoming Empowered called on donors and sponsors of Autism Speaks to end their support, accusing Autism Speaks of using rhetoric of “fear and pity” in its messaging and noting the lack of leadership of autistic people on its board. 

Autism Speaks “has a very problematic history of terrible messaging that spreads fear and stigma of autism,” Steve Silberman, an autism expert and author of NeuroTribes: The Legacy of Autism and the Future of Neurodiversity, told Current.

Silberman said he was disappointed that Sesame Workshop had decided to work with Autism Speaks. He pointed to a study published in May by the journal Autism that found that Sesame Workshop’s initiative had increased acceptance of autistic children and confidence in parents of children with autism. It had also given parents more hope about involving their children in the community. 

Gross also pointed to the study as proof of the success of ASAN’s prior work with Sesame Workshop. ASAN is willing to continue working with Sesame Workshop on developing materials for its autism initiative if the Workshop ends its partnership with Autism Speaks, she said. 

“Only if they end that partnership and they return to promoting and producing content that promotes the acceptance of autism,” Gross said. “They can’t have it both ways.”