Seeing Beyond Amazing: Is Sesame Street really changing the way we understand autism?

by Sam Killian on December 14, 2015

This is a guest post by Anne McGuire, author of the University of Michigan Press forthcoming title, War on Autism.

Seeing Beyond Amazing: Is Sesame Street really changing the way we understand autism?

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The Sesame Workshop, the non-profit educational organization behind Sesame Street, made international headlines and lit up social media last month with the introduction of its newest Muppet character, Julia. With wispy orange hair and bright green eyes, Julia is, according to Sesame: “a preschool girl with autism who does things a little differently when playing with her friends”. Julia is more than a just another person in the neighbourhood, however. She is also the face of a major new autism initiative – “Sesame Street and Autism: See Amazing in All Children”. The initiative’s website features a host of digital content, including online resources geared toward families and caregivers of autistic people and videos of various (mostly neurotypical) people talking about autism. “See Amazing” is the culmination of two years of research and collaboration with major US autism agencies and advocacy groups from across the political spectrum including the often opposed parent/professional-led organization, Autism Speaks, and the autistic-led rights organization, Autistic Self-Advocacy Network.

As a disability studies researcher and teacher whose work analyzes cultural representations of autism, I am intrigued by the initiative’s sense of optimism. “See Amazing” differs markedly in tone and tenor from major autism awareness campaigns of the past decade, which have relied heavily on the rhetoric of tragedy, fear and crisis. At first blush, “See Amazing” seems like a refreshing turn away from all of this. It has been exceptionally well received, lauded as a “game-changing” moment in contemporary autism advocacy. Gone are the familiar references to endangered children and warrior advocates. There is not a single mention of a missing puzzle piece. “See Amazing” is very clearly about positive messaging and it is a part of what I understand to be a greater shift within current day autism advocacy. More and more, organizations are distancing themselves from the overt fear-mongering tactics of the past decade, instead embracing hopeful narratives of diversity, acceptance and spectrum (See, for example, the recent rebrands of Autism America and Autism Canada).

In line with this shifting terrain of autism advocacy, a major aim of “See Amazing” is to improve public understanding of autism. The stakes are high. According to Sesame, the “lack of understanding around the condition contributes to discrimination, verbal abuse, even physical violence.” Indeed, disabled people in general and autistic people in particular have long, and in very systemic ways, been made targets of violence.  This is not only supported by research (e.g., according to an article in the Independent last week, disability hate crimes have increased 41% in the UK this past year), it is also fiercely felt in and fought by our disability communities. It is precisely because the stakes are so high that I question whether these emergent, more positive forms of advocacy are truly revolutionary. Are these representations indeed working to dismantle dangerous cultural logics that produce autism as a pathological condition of human life, instead of as a lived human condition?

I must admit: Julia gives me pause. And so does the greater initiative she has come to represent.

 

Julia: Progressive Muppet or Clinical Puppet?

Much has been made of the introduction of the first autistic Muppet and yet, as has been pointed out by bloggers Erin Human and The Caffeinated Autistic, Julia isn’t really a Muppet at all. According to Sesame, Julia will not be making an appearance on the show as a full-felted character. As least for now, she appears only in cartoon form in the digital storybook, We’re Amazing 1,2,3. In the book, beloved Sesame Street regulars Elmo and Abby Caddaby spend the day playing with Julia – they go swinging in the park, play I Spy, sing and go for a treat at Mr. Hooper’s store. The story is told from the perspective of Elmo and it is he who is charged with the task of introducing Julia. It is an introduction that begins with a disturbance of expectations: Abby is confused when Julia (seemingly) doesn’t respond to her greeting. Placing a kindly red hand on Abby’s shoulder, Elmo divulges: “Elmo’s daddy told Elmo that Julia has autism so she does things a little differently. Sometimes Elmo talks to Julia using fewer words and says the same thing a few times.”  Notably, Julia does not appear in this scene. This is a furtive exchange between neurotypical friends. It is, at once, a diagnosis – a way to make sense of the landscape of unexpected behaviours – and a prescription – it tells us how to ‘properly’ respond. Yet, Julia’s absence means that the audience is not privy to her feelings about Elmo’s diagnostic disclosure. It also means that we are not given insight into her own thoughts about autism and the terms of its response.

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This scene with Elmo and Abby puts me in mind of another fictionalized account of autism as seen in NBC’s family drama Parenthood (yet another show partnering with Autism Speaks to raise awareness about autism via the creation of an autistic character). In the show’s pilot episode, two of its main characters, Adam and Christina, come to terms with the possibility that their son Max might be autistic. Says a teary Christina to her husband: “I heard from the educational therapist, she has some concerns about Max […] she thinks that he may have Asperger’s […] honey, there’s something wrong with our baby”. What is interesting to me about this scene is not so much the tired narrative trope of disability-as-tragedy, but is rather how Max gets radically redefined in this moment of diagnosis. Christina continues: “It’s not just the academics, ok? Or the biting or the pirate costumes or the fear of fire or the tantrums….it’s everything.” In this diagnostic moment, Max is stripped of his agency, his identity. His whole world and his whole self – his actions and reactions, the things he cares for, the things he fears – are radically reorganized, redefined as nothing other than a series of symptoms. The kid no longer loves pirates, he “has obsessive interests”. He’s not scared of fire, he exhibits “more fear than expected”. In the diagnostic moment, a disorderly autism becomes Max’s “everything”.

Whereas in Parenthood we witness as a previously dynamic Max gets flattened out into a series of clinical symptoms, Julia seems to have been built from the symptom out. Unlike the vibrant and multifaceted Muppets for which the show is famous, Julia is, from the start, a two-dimensional caricature of a clinical story of autism. Right from the beginning of the book, the reader is taken through a series of stark juxtapositions: scenes that counterpose normalcy (as is embodied by Elmo) and its abnormal other, autism (as is embodied by Julia).

“Elmo likes blocks. He builds really tall block towers. He also likes to knock them down. CRASH! Julia likes blocks too she lines them up in a row. Elmo likes to play with his toy cars and trucks. So does Julia. She especially likes spinning the wheels around and around.”

In these scenes, Julia is the personification of the Centers for Disease Control and Prevention’s checklist of signs and symptoms of autism. Strip away the characteristic Muppet hair and grin and Julia is “unusual interests and behaviors”. She “lines up toys or other objects” and “likes parts of objects (e.g., wheels)”.  Elsewhere, she enacts “deficits in social-emotional reciprocity” and “failure of normal back-and-forth conversation”. Julia is the “red flags”, sketched out.

The literalness with which Julia performs the clinical signs and symptoms of autism is intentional.  She is an educational tool meant to teach a neurotypical audience about a biomedical version of autism with the stated hope that this will reduce autism discrimination and violence.  Yet, if Julia is little more than a checklist of abnormal signs and symptoms, if her character is not brought to life, given complexity and depth, can she possibly work to dismantle systems of oppression faced by autistic people?

The answer, in short, is no.

 

We Can’t Fight Discrimination with Pathologization

 Julia reflects a pathologized story of autism and, as has been demonstrated for decades by disability rights and justice activists and scholars, we can’t fight discrimination with pathologization. As a process, pathologization is dehumanizing; it works to distill complex people into states of disorder. It marks that which is abnormal, undesirable. It is therefor not only a common effect of discrimination, it anticipates it and even ensures it.

The problem with “See Amazing” is not a superficial one and it’s not limited to Julia. There is a troubling conflict between the intiative’s positive packaging and an underlying understanding of autism as undesirable pathology. Unfortunately, this latter understanding threatens to undercut (if not completely refute) important messages about (neuro)diversity, access and acceptance.

For example, the website offers valuable discussion about the worth of all kinds of minds and bodies. Yet, what does it mean to have Elmo sing “…We all are important, we all are okay. We all are amazing, each in our own way…”, when elsewhere on website, we encounter the language of crisis and epidemic (“In the U.S., 1 in 68 children is diagnosed with autism spectrum disorder (ASD)…”) and analogies linking autism to life-threatening illnesses (“…that makes autism more prevalent than childhood cancer, juvenile diabetes and pediatric AIDS combined”[1])? It’s great to see the website explicitly showcasing kids with a range of sensory processing dynamics and ways of communicating – the videos show kids communicating using speech, sign, gesture and technology. The true value of these representations is undermined, however, by other scenes that depict a seeming disregard for differences in sensory processing and non-normative ways of communicating (e.g., the distressing clip from “Thomas’s Story” where Thomas, who communicates non-verbally, stands up to touch Abby’s pink feathery hair, only to have his father tug repeatedly on a service dog leash connected to Thomas’ waist, forcing him back into his seat).  Amidst prevalence statistics, inappropriate analogies and everyday acts of normative violence, the language of “amazing” seems disingenuous at best. At worst, the initiative may be at risk of sustaining the very frameworks of discrimination and violence it is seeking to abolish.

 

Ways Forward

If an autism initiative is to be revolutionary – I mean, if it is to truly change the contemporary conversation about autism – it must be built, from the ground up, on the value of autistic people and the worth of autistic difference. If advocacy campaigns seek to eliminate autism discrimination and violence, they must cultivate an understanding of different kinds of people, not different kinds of pathologies. Of course, the best way of cultivating an understanding of people – especially people who might not move, act or think in normative ways – is to listen.  Eight of the nine documentary videos on the “See Amazing” website feature neurotypical people talking on behalf of autistic people, telling us what autism is and how it should be responded to. This has to change. Let’s hear it from The Real Experts, from autistic adults and kids, too.

Finally, what about Julia? As Sesame Street’s first autistic muppet, Julia certainly represents an opportunity to connect with neurotypical kids, but not by teaching them about signs or symptoms. As is so perfectly articulated by Caffeinated Autistic: “four year olds don’t really need a primer on autism. They need a primer on how do I help my friend have as much fun as I’m having?” The opportunity, here, lies in teaching about the validity of the unexpected response, the significance of non-normative movements, and the value of autistic perspectives. Of course, Julia also represents the opportunity to connect with autistic kids, kids who regularly face discrimination and even violence. “It’s time to go back to the drawing board” writes Erin Human and I agree. If the Julia we have come to know is little more than sign and symptom, then it is important to start again. To the Sesame team: bring Julia to life. Give her vibrancy, complexity and quirk.

Give her a sense of justice. Make her a revolutionary.

And then let’s hope the kids at home get some ideas.

[1] This statement linking autism to cancer, diabetes and AIDS has since been removed from the initiative’s website without comment from the Sesame Workshop.

 

Anne McGuire is Assistant Professor, Teaching Stream, in the Equity Studies Program at New College, University of Toronto. She is the author of War on Autism, forthcoming from the University of Michigan Press.

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