Four years ago, Sesame Street introduced Julia, its first new Muppet in 10 years. At first only in an online picture book, and later the show itself, the character, an autistic 4-year-old girl, was shaped by a diverse group of autism advocates and researchers. Julia is sunshine-yellow and never without her beloved rabbit, Fluffster. She has fun with her good friends Elmo and Abby Cadabby, two of the most popular characters on Sesame Street. Julia was even featured on a float in last year’s Macy’s Thanksgiving Day Parade. She was a triumph of representation for people like me.
And now, Julia is being used to promote a resource that suggests parents of newly diagnosed autistic children go through the five stages of grief for their (still-living) child, among other regressive and dangerous narratives about autism.
I am autistic, like Julia. Instead of a childhood full of social rejection and isolation like mine, Julia’s life modeled a better world, until very recently. Julia’s difference is embraced by her friends. People go out of their way to understand and include her. I’m a little embarrassed to admit that the first time I heard “The Amazing Song,” the show’s anthem about autism, I cried. “We all can feel happy, we all can feel mad” doesn’t sound revolutionary, but many still believe that autistic people don’t feel at all.
Crucially, one of the groups behind Julia was the Autistic Self Advocacy Network—the only national organization by and for autistic people in the United States. It was groundbreaking that Sesame Street told stories about an autistic person in consultation with actual autistic people. We are rarely the ones who tell our own stories, and most of the stories other people tell about us are sensational or just downright awful. Ironically, a felt puppet with a traffic-cone-orange nose is one of the most realistic, informed, and positive representations of autism to ever appear on television.
But now, the organization is no longer involved. ASAN’s decision to break with Sesame Street this month might seem surprising at first glance, but it came on the heels of the show’s baffling partnership with another group that’s enduringly divisive among advocates: Autism Speaks.
Autism Speaks is behind the 100 Day Kit for Young Children, which describes itself as “a tool designed to help assist families of children recently diagnosed with autism during the critical period following an autism diagnosis.” Autism can require a high degree of specialized support, and many parents don’t adequately learn about their child’s disabilities. The kit includes useful tools for advocating for a child’s inclusive education and keeping appointments organized, for example. The problem is, it also weaves incredibly harmful information with useful information with little to no distinction.
ASAN decided to cut ties with Sesame Street after the show partnered with Autism Speaks for public service announcements that push the 100 Day Kit, over the former group’s vehement objection.
At first, it might not be so obvious what’s wrong with the partnership. When you watch the Autism Speaks ad spots in question, everything seems to be about acceptance. What’s not to love about playing music with friends or promoting diversity in communication? Autism Speaks is one of the largest, most visible autism charities. What could possibly be wrong? It’s only when you click through to the resource itself that things begin to get murky.
The ads encourage viewers to have their children screened for autism and points to a resource on the Autism Speaks website that declares, “For Julia’s family, early screening made a lifetime of difference.” The first and biggest link on the page is a test called the M-CHAT-R (Modified Checklist for Autism in Toddlers, Revised). It takes about two minutes and can be used to evaluate whether your child is keeping up with developmental milestones. This is relatively harmless—I and many other autistic adults feel that funding, and focus, on early diagnosis is disproportionate to the benefits and excessive, but it’s hardly offensive. What happens if the test comes up positive, though? Then you get a link recommending the Autism Speaks 100 Day Kit for Young Children.
The 100 Day Kit features a persistent narrative that having a child like me or Sesame Street’s Julia is like having a child who has died. The kit even has an entire section outlining how parents may go through the Kübler-Ross stages of grief. Then there are smaller suggestions that children like me are a tragedy: In one parental anecdote, a mother complains about how a kid at her child’s preschool who was diagnosed with leukemia is getting all the attention she deserves, as if having a child with cancer and a child with a developmental disability are at all comparable. For the record: Nobody has ever died of autism.
Elsewhere, the guide suggests a restrictive gluten-free, dairy-free diet for autistic children, which has no scientific support. This is listed alongside medically validated autism interventions like occupational therapy. (In an email, Autism Speaks said, “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, a longtime hotbed of controversy, currently asserts that it is not, in fact, searching for a cure for autism. Much fanfare was made last year when the word cure was removed from its mission statement. Cure research has become increasingly unpopular as neurodiversity, the branch of the disability rights movement pioneered by autistic self-advocates, has become mainstream. The 100 Days Guide for Young Children, on the other hand, says the exact opposite more than a dozen times. “Autism Speaks is dedicated to funding global biomedical research into the causes, prevention, treatments and a possible cure for autism,” the guide announces on its first 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.” It’s not hard to see why the Autistic Self Advocacy Network, an organization dedicated to acceptance and inclusion, was forced to cut ties with Sesame Street. As the group explained, infuriatingly, “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.”
The way we talk about autism’s impact on families matters. Julia is so refreshing because she is portrayed as a normal child—she plays, she has friends, she has a family. She is different in some ways; she has her difficulty tolerating loud noises, for example. But those differences are embraced by the people around her. The Autism Speaks PSAs promote a message diametrically opposed to the spirit and purpose of the character. I hope Sesame Workshop reconsiders its puzzling decision to promote harmful narratives about autism—after waiting so long for a character like her, autistic people like me deserve to love and embrace Julia in an uncomplicated way.