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14 t m c » p u l s e | d e c 2 0 1 9/JA N 2 02 0 9 Bringing Autism to Mainstream Media B y A l e x a n d r a B e c k e r J ulia is 4 years old, yellow, and wears her red hair cut short in a bob. When Big Bird first introduced himself to her on the April 10, 2017, episode of "Sesame Street," the newest Muppet did not look up from the paper she was painting. Big Bird seemed confused, but Alan—a "Sesame Street" regular who owns the fictional Hooper's Store—explained that Julia was just busy concentrating. Julia, Alan told Big Bird, has autism. "Autism. What's autism?" Big Bird asked. "Well, for Julia, it means that she may not answer you right away … and she may not do what you expect, like give you a high-five," Alan replied. The groundbreaking episode focused on inclusion and explained, in a clear and understated way, the differences between autistic and non-autistic individuals. Julia was heralded as a breakthrough for how autism is portrayed in the media. "Julia is an autistic character who is consistently shown to be fully included in her community, as being a part of a loving family, being a good friend to other members of her community and standing up for others. That's really revolutionary. That's not usually how autistic people are depicted in the media—as having these ordinary lives and these valuable social roles and being a positive addition to the community around them," explained Julia Bascom, executive director of the Autistic Self Advocacy Network (ASAN), a nonprofit run by and for autistic people. Bascom and ASAN, along with other autism organizations, were consulted for the creation of Julia's character. Notably, the puppeteer who plays Julia has a son with autism. But this summer, ASAN felt compelled to cut ties with "Sesame Street" after a partnership between the long-running television series, Autism Speaks (the largest autism advocacy organization in the country) and the Ad Council promoted resource materials that ASAN strongly opposes. The materials are attached to public service announcements (PSAs) that aim to lower the age of autism diagnosis by teaching parents how to identify signs of autism. "Our goal is that we want to help as many people with autism as we can, and this public service announcement was about having children screened, learning the signs of autism, and, if necessary, to get the treatment and support that they may need to live their best possible life," said Lisa Goring, the strategic initiatives and innovation officer for Autism Speaks, which also had a hand in the creation of Julia's character. It isn't the PSAs, per se, that ASAN members disagree with—it's the messaging in some of the resource materials offered by Autism Speaks, specifically the "100 Day Kit," which contains information geared towards families of children under the age of 4 who have recently received an autism diagnosis. Bascom said members of ASAN feel the 100 Day Kit in particular reflects much of the stigma and misinformation parents often encounter and that "Sesame Street" has been changing with the addition of Julia. "Basically, [the kit] tells parents to grieve for their autistic child, as though that child had died. It actively discourages parents from accepting that their child is autistic, even though we know that paren- tal acceptance is one of the most important things for a young autistic child," Bascom said. ASAN also disagrees with the kit's messaging about helping kids "get better" and the encouragement of certain intensive behavioral therapies, she added. "It's just focused on creating this mask for an autistic person," Bascom said. Validating each family's feelings Rachel Fein, Ph.D., a licensed psychologist who works within the Autism Center at Texas Children's Hospital, said she understands why self-advocates may be offended by the messaging in the kit. She added, however, that her responsibility as a provider is to offer as much evidence-based information as possible while also validating a family's feelings. "I don't tell families how they should feel after they learn that their child has autism, but I certainly validate those feelings, whatever those might be," said Fein, an assistant professor of psychology in the department of pediatrics at Baylor College of Medicine. "There are some families that, their journey to finally getting their child evaluated or finally getting the services that they need—for some it's not a surprise for them, in fact, it's almost a relief, because they have a name to describe some of the things that they've been seeing all along." But, Fein added, other families struggle with hearing the information. "Some families, they describe it as grief," Fein said. "Other families, they just describe it as, 'I want the best for my kid; I want them to have the best life that they can possibly have.' And I think that can be really challenging, especially for some of the self-advocates. They hear that and it can be saddening to hear, and it can be offensive, but I also think it's coming from a place of a parent who never wants their child to experience any sort of struggle or pain." Fein said that she believes both Autism Speaks and ASAN serve important purposes and that their messaging isn't mutually exclusive. She recommends resources from both organizations to families she counsels. Credit: © 2018 Richard Termine A recent PSA featuring Julia from "Sesame Street" has created a rift in the autism community