Four years ago, Sesame Street enriched its neighborhood by introducing Julia, a groundbreaking Muppet and the first new character in a decade. Julia, a bright sunshine-yellow four-year-old always accompanied by her plush rabbit Fluffster, made her debut not on television screens, but within the pages of an online picture book. Later, she transitioned to the beloved show itself, instantly becoming a significant figure. This autistic character was meticulously crafted with input from a diverse panel of autism advocates and researchers, ensuring authenticity and sensitivity. Julia quickly charmed audiences, befriending iconic Sesame Street residents like Elmo and Abby Cadabby, and even graced the Macy’s Thanksgiving Day Parade. For many, including myself as an autistic individual, Julia represented a monumental step forward in representation.
However, this beacon of positive representation has become entangled in controversy. Julia is now being used to promote resources, specifically the Autism Speaks 100 Day Kit, that perpetuate outdated and harmful narratives about autism. This kit controversially suggests that parents of newly diagnosed autistic children should navigate the diagnosis through the five stages of grief – for a child who is very much alive. These narratives stand in stark contrast to the inclusive and accepting world Julia embodies.
As someone who shares Julia’s autism, her initial portrayal resonated deeply. My own childhood was marked by social isolation and misunderstanding. Julia, in contrast, presented an aspirational reality where differences are not just tolerated but celebrated. Her friends on Sesame Street actively seek to understand and include her, showcasing a world of empathy and acceptance. The first time I heard “The Amazing Song,” Sesame Street’s anthem of acceptance for autistic individuals, I was moved to tears. Lines like “We all can feel happy, we all can feel mad” may seem simple, yet they challenge the persistent and damaging misconception that autistic people lack emotions.
The core issue lies in the message embedded within the 100 Day Kit: the implication that having a child like Julia, or like me, is akin to experiencing the death of a child. This narrative is not only inaccurate but deeply damaging to autistic individuals and their families.
A critical element in Julia’s creation was the collaboration with the Autistic Self Advocacy Network (ASAN), the leading national organization run by and for autistic people. Sesame Street’s commitment to consulting autistic individuals in telling autistic stories was groundbreaking. Too often, narratives about autism are sensationalized or misinformed, perpetuating negative stereotypes. Ironically, Julia, a puppet character, emerged as one of the most authentic, positive, and well-informed representations of autism on television, a stark contrast to often harmful portrayals in media like sensationalized news reports or poorly researched fictional series.
However, this vital partnership has dissolved. ASAN’s recent decision to sever ties with Sesame Street stems from the show’s perplexing alliance with Autism Speaks, an organization that remains deeply controversial within the autism advocacy community.
Autism Speaks, the organization behind the 100 Day Kit for Young Children, describes it as “a tool designed to help assist families of children recently diagnosed with autism during the critical period following an autism diagnosis.” While the kit includes some potentially helpful resources, such as guidance on advocating for inclusive education and managing appointments, it is fundamentally flawed. It interweaves practical advice with profoundly harmful and regressive information, blurring the lines and creating confusion for parents at a vulnerable time.
ASAN’s withdrawal of support came directly after Sesame Street partnered with Autism Speaks to create public service announcements promoting the 100 Day Kit, despite ASAN’s strong objections.
Initially, the problematic nature of this partnership might not be immediately apparent. The Autism Speaks public service announcements appear to champion acceptance and understanding. They showcase positive interactions, like making music together and celebrating diverse communication styles. Autism Speaks, as one of the largest and most visible autism charities, seems like a natural ally. The danger, however, is revealed upon closer examination of the 100 Day Kit itself.
These public service announcements encourage parents to screen their children for autism, directing them to resources on the Autism Speaks website. One prominent link emphasizes, “For Julia’s family, early screening made a lifetime of difference.” The most prominent link on this page is the M-CHAT-R (Modified Checklist for Autism in Toddlers, Revised), a brief screening tool for developmental milestones. While early diagnosis can be beneficial, many autistic adults, including myself, feel that the intense focus and funding directed towards early diagnosis overshadows the need for support and acceptance later in life. However, the M-CHAT-R itself isn’t inherently offensive. The issue arises when a positive screening result leads parents directly to the Autism Speaks 100 Day Kit for Young Children.
The 100 Day Kit perpetuates the damaging idea that having an autistic child is comparable to losing a child. It includes an entire section dedicated to guiding parents through the Kübler-Ross stages of grief. Beyond this central theme, the kit subtly reinforces the notion that autistic children are a tragedy. One anecdote from a parent within the kit complains that a child with leukemia at their preschool is receiving more attention, absurdly implying a competition for sympathy between families facing childhood cancer and developmental disabilities. It is crucial to state unequivocally: autism is not a terminal illness.
Further compounding the harm, the guide promotes a restrictive gluten-free, dairy-free diet for autistic children, a recommendation lacking scientific evidence. This unsubstantiated dietary advice is presented alongside legitimate, medically recognized interventions like occupational therapy, creating a false equivalency and potentially misleading parents. (In response to inquiries, Autism Speaks stated that “The 100 Day Kit is not intended to provide medical advice, but rather to provide general information about autism services to the community to help them make informed personal decisions.”)
Autism Speaks, despite recent public relations efforts, has a long and controversial history within the autism community. While the organization publicly claims to have moved away from searching for a “cure” for autism – highlighted by the removal of the word “cure” from their mission statement – the 100 Day Kit directly contradicts this assertion. “Autism Speaks is dedicated to funding global biomedical research into the causes, prevention, treatments and a possible cure for autism,” the guide declares on its opening page. “Great strides have been made and the current state of progress is a far cry from the time when parents were given no hope for their children.” This conflicting messaging makes it clear why ASAN, an organization dedicated to autism acceptance and inclusion, felt compelled to end its partnership with Sesame Street. As ASAN explained, “Our contacts acknowledged that the Autism Speaks resources were harmful and portrayed autistic children in a negative light—yet they were unwilling to reverse course in their plans to promote them.”
Julia interacts with Abby Cadabby, showcasing positive peer relationships and acceptance on Sesame Street.
The language and narratives surrounding autism and its impact on families are profoundly important. Julia’s character is so impactful precisely because she is portrayed as a child first and foremost – she plays, has friendships, and is part of a loving family. While she experiences the world differently, such as her sensitivity to loud noises, these differences are met with understanding and acceptance by those around her. The Autism Speaks public service announcements, by promoting the 100 Day Kit, send a message fundamentally opposed to the spirit and purpose of Julia. It is my sincere hope that Sesame Workshop will reconsider its decision to promote these harmful narratives. After waiting so long for a character like Julia to emerge, autistic individuals deserve the opportunity to embrace and celebrate her without reservation, in a world that truly understands and accepts neurodiversity.
