Two years ago, Sesame Street began airing episodes featuring its first new muppet in a decade. Her name was Julia, and she was autistic. In order to ensure she acted authentically, Sesame Workshop, the nonprofit responsible for the show, consulted with teams of researchers and advocacy groups. And they got it right. Julia’s portrayal was well received in the autistic community, who saw her as an important piece of cultural representation for autistic children who normally don’t get to see themselves portrayed on screen and a chance to help educate the broader community about autism.
But now the Autistic Self Advocacy Network, an autism empowerment group that helped developed Julia, is disowning her. ASAN represents an outspoken community of at least 40,000 followers on social media that disagrees with Julia’s ties to a new campaign meant to promote early screening for the developmental disorder. ASAN says the learning materials included in the campaign stigmatize autistic people and their parents, and in response the group will stop consulting with Sesame Workshop, effective immediately.
The issue started in late July, when the show partnered with the Ad Council and advocacy group Autism Speaks to promote several ads that highlight the various ways that Julia has learned to adapt and enjoy her life, helped by the fact that her parents and friends are aware of her developmental disorder. Each spot encourages parents to seek early screening and then throws to a website with more resources: ScreenForAutism.org. That site features a large picture of Julia playing beneath a colorful rainbow full of toys and symbols that represent different childhood activities. But the page belongs to Autism Speaks, a group with a controversial history that its critics say treats autistic people as victims and potential burdens on their parents.
For ASAN, the problem isn’t with the formal call-to-action for early screenings: On average about one in 59 kids in America are diagnosed with autism, a statistic that’s generally regarded as low because more than 65% of parents with kids under the age of 6 don’t do screenings. The issue is with the support materials—a “100 Day Kit” for parents whose children have just been diagnosed—that the campaign has allowed its characters to tacitly endorse. “If you look at the content that they’re promoting, it’s like [Sesame Workshop is] using the language of acceptance as the Trojan horse for these really old tired, stigmatizing, harmful ideas,” says Zoe Gross, ASAN’s director of operations.
In a public statement, ASAN condemned that kit for stigmatizing diagnosis as a negative, disempowering event that diminishes the value of the recipient.
“The 100 Day Kit encourages parents to blame family difficulties on their autistic child (“When you find yourself arguing with your spouse… be careful not to get mad at each other when it really is the autism that has you so upset and angry”) and to view autism as a terrible disease from which their child can “get better.” It recommends compliance-based “therapies” and pseudoscientific “autism diets,” but fails to educate families about communication supports. It even instructs parents to go through the five stages of grief after learning that their child is autistic, as they would if the child had died.”
As a consultant for Sesame Workshop, ASAN saw the PSA content ahead of time and made it clear that it would sever ties if the resource page for Autism Speaks remained. Jeanette Betancourt, Sesame Workshop’s senior vice president for social impact in the United States, says the group was aware of the potential blowback ahead of time but decided to proceed. Sesame Workshop has no plans to alter the current campaign.
“We said that our scope is not really in support of an individual resource or an individual organization. And that we were collaborating with Autism Speaks and the Ad Council for the messaging and the purpose of the campaign, which was in early screening and early diagnosis,” she says. “We’re always looking at that bigger perspective. We truly value all our partners, including ASAN, and are disappointed, but we understand their perspective, and we respect it.”
Autism Speaks has a budget of $50 million annually, which it invests in general areas like research, advocacy, and support services for people in need. The group, founded in 2005, for years drew criticism for its stated intention to “cure” autism—language that stigmatizes the neurologically different, many of whom don’t feel marginalized by their diagnosis. In 2016, the organization deleted the reference from its promotional materials, but only after a wave of criticism that reportedly included a board member who is autistic resigning over increasingly fear-mongering language, and autistic Twitter users hijacking one of the group’s hashtags to express their general discontent.
“In 2016, we refocused our mission to better serve the community and to reflect what Autism Speaks represents,” says Lisa Goring, the nonprofit’s strategic initiatives and innovation officer. Goring says the toolkit was developed through the group’s own work with researchers and the community it’s intended to serve. “Each person with autism is different and has different strengths as well as different challenges,” she adds. She views the toolkit as a “roadmap” for families “so that they can really make sure that their child with autism can lead their best possible life.”
Autism Speaks and ASAN collaborated on the creation of Julia for a campaign called “See Amazing in All Children,” which created online learning hubs and supplementary resources, in part because both felt that the overall messaging seemed positive and inspiring. (Julia became a full character on Sesame Street after the reception she got in the campaign.) The work was a success: In May 2019, a study in the international peer-reviewed journal Autism found that parents of nonautistic children who engaged with that material showed a “small but significant” increase in knowledge about autism, while the parents of autistic kids reported feeling less daily strain and more competence in their decisions, along with more hope about their kid becoming more involved with others.
ASAN is run entirely by people who are autistic. One of its criticisms is that Autism Speaks can’t possibly understand the community it serves because it doesn’t include enough people who are autistic in its daily operations (Goring says there are “several team members” on the spectrum). The group is also concerned that Autism Speaks cofounder Bob Wright is on Ad Council’s honorary board of directors, which might have led to the shrugging off of their criticism. The Ad Council declined to comment for this story, while Goring emphasizes that Wright had nothing to do with the campaign.
And now ASAN’s departure from the group and Sesame Workshop’s continued support seems to have rankled other early advocates of Julia’s existence, who are sharing their disbelief on Twitter.
— Emily Paige Ballou (@epballou) August 5, 2019
Unless something changes, Julia’s subsequent character development will continue without ASAN’s input. “Sesame Street, I think in developing these PSAs, had the idea that they could promote something that went counter to the values of what they said they were trying to achieve with ‘See Amazing’ and it wouldn’t do harm,” says Gross at ASAN. “And of course it will do harm. . . . Like just like when Sesame Street said, ‘Accept your child.’ People took that seriously. When Sesame Street is saying these other things, people are going to take that seriously too. I don’t know why they think they won’t.”
Update: We’ve changed the headline of this article to reflect the fact that ASAN did not help create the character of Julia, but did aid in her development and the creation of her accompanying educational material.