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Why "Sesame Street" Needs to Reassess Their Partnership with Autism Speaks

While Autism Speaks is certainly the most well-known "autism advocacy" organization, it's almost universally despised by people who actually have autism.

HBO

At first glance, Sesame Street's newest autism PSAs seem totally harmless.

Julia :60 l Autism Awareness l Ad Council www.youtube.com

The campaign stars Julia, Sesame Street's muppet with autism designed with input from actual people with autism, and centers around building awareness to help parents recognize symptoms of autism and get their children diagnosed early. But within the autism community, Sesame Street's ads have become a major source of contention. The problem isn't the ads' content, but rather the organization they've chosen to partner with and direct parents to––an organization that many in the autism community view as extremely harmful to actual people with autism: Autism Speaks.

Sesame Street's newfound endorsement of Autism Speaks was enough to cause ASAN (Autistic Self Advocacy Network), a major autism advocacy nonprofit who consulted on the original creation of Julia, to end their partnership with the show. ASAN acknowledged the "widespread positive impact" of Sesame Street's earlier See Amazing in All Children project, but they felt that by partnering with Autism Speaks, Sesame Street was "decid[ing] to undo that progress."

ASAN has a good point. While Autism Speaks is certainly the most well-known "autism advocacy" organization––to some, blue jigsaw puzzle pieces have even become synonymous with autism––it's almost universally despised by people who actually have autism.

autism speaks Because people with autism are like jigsaw puzzles?Autism Speaks

The main reason for this is that Autism Speaks, in spite of its branding, isn't actually an advocacy group for people with autism; really, it's an organization pandering to parents' worst fears about raising children with autism, and it runs with almost zero input from people on the spectrum (only two of the 26-member Board of Directors are autistic). Moreover, Autism Speaks has actively propagated multiple dangerous myths about autism and still funnels a large chunk of their donations into researching a "cure for autism," an endeavor that many people with autism consider akin to eugenics.

The ideological divide between Autism Speaks and the rest of the autism community largely boils down to representation. Groups like ASAN (largely run by adults on the autism spectrum) advocate for autistic inclusion, asserting that autism is a neuroatypicality, not a disease, and that people with autism are fully capable of speaking for themselves and leading fulfilling, productive lives. Their philosophy stems largely from the personal experiences and input of people living with autism.

ASAN believes that the best way to help children with autism children is to understand the unique ways in which they communicate and give them the tools they need to successfully express themselves to others. For instance, non-verbal people with autism often benefit greatly from augmentative and alternative communication supports (AAC) like speech-generating devices. In many cases, people find that, with the help of AAC, children once thought to be "low-functioning" are far more capable and self-aware than anyone imagined. A great example of this is The Reason I Jump, a memoir written by Naoki Higashida, a 13-year-old, non-verbal boy with autism.

Autism Speaks, on the other hand, is more concerned about the parents raising children with autism. But in doing so with almost no input from people with autism, they approach the topic from the perspective of combating and overcoming autism––a perspective that might help families "deal with" having a child with autism, but that oftentimes hurts said child in the long-run.

To understand Autism Speaks' perspective on autism, one need not look further than their 2009 I Am Autism video, an exceedingly bizarre short film directed by Alfonso Cuarón, which paints autism as an evil force hell-bent on ruining marriages, crushing dreams, and destroying families.

I Am Autism commercial by Autism Speaks www.youtube.com

The video was so horrendous that it sparked protests by the autism community, eventually leading to Autism Speaks' taking it down. Regardless, their view of autism as an evil adversary remains crystal clear. For instance, Autism Speaks' primary therapy recommendation is Applied Behavior Analysis (ABA), a form of "normalization" training with the end goal of making individuals with autism indistinguishable from their neurotypical peers. These methods are considered a form of abuse by many people on the spectrum, and it relies on practices like "quiet hands," which physically forces people with autism to stop "stimming," effectively suppressing a unique way they interact with the world around them.

Autism Speaks has partnered with loads of major corporations, from GameStop to Home Depot, and it's even been supported by the Trump administration. On one hand, it makes sense why Autism Speaks is so prolific. Raising a child with autism is extremely hard on parents and families, and Autism Speaks is easily the most visible, clear, and concise hub for resources on the topic. Their 100 Day Kit for families of newly diagnosed young children offers a comprehensive guideline for action. And while some of the content is problematic and upsetting to read for most adults with autism––at one point, the guide walks parents through the 5 stages of grief, typically reserved for the death of a loved one––parents of newly diagnosed children will likely benefit from feeling accepted and understood through what will certainly be one of the most trying periods of their lives.

Autism Speaks White House Autism Speaks Light It Up Blue CampaignD. Myles Cullen/White House

At the same time, when so many members of the autistic community have come out to deride Autism Speaks––urging them again and again and again to listen to the concerns of actual people with autism, to stop backing unsubstantiated claims that vaccines cause autism, and to not claim they speak for people they are clearly not speaking for––those detractors are not just doing it to be contrarian. They're doing it because they've lived with autism their entire lives, experienced the repercussions of damaging childhood "therapies," and have insight to offer that is being ignored. Worst of all, ignoring those insights results in harming today's children with autism when better, more ethical, and more effective alternatives are being overlooked.

One potential solution would be for groups like ASAN, which tend to focus on autism self-advocacy, to release comprehensive material for parents of children with autism, like Autism Speaks does. While ASAN has a great resource library, it's a lot harder to navigate than Autism Speaks'100 Day Guide, and it makes sense that parents thrust into such a difficult situation would choose the most prominent, (seemingly) comprehensive resource available. As an alternative, providing an all-in-one guide for parents of newly diagnosed children with autism, filled with insight from a diverse range of adults with autism (verbal and non-verbal) and focusing on communication support, like AAC instead of normalization therapies like ABA, could really change the autism community for the better.

After all, the Internet and assistive technology have opened up unprecedented paths of communication and self-expression for people with autism. And while low-functioning people with autism might not have the capacity to fully utilize it, it's important to realize that "non-verbal" does not necessarily mean "low-functioning"; some children with autism who are thought to be low-functioning are really capable of full comprehension and simply don't have access to the right means of communication, yet.

The truth is that many people with autism love themselves for who they are and consider autism an integral aspect of their identity. In this light, a "cure for autism," even if viable, wouldn't be ethical without the express approval of the person receiving it (except possibly in cases of truly low-functioning people with autism for whom every other form of assistive technology has already been exhausted...but even then, it's tentative). As such, Autism Speaks' narrow insistence on finding a "cure for autism" that most actual people with autism don't want is morally dubious, at best. Ultimately, Autism Speaks' is better than nothing considering the amount of resources they offer for parents raising children with autism. But it's hard to justify supporting them when they barely include people with autism in their decision-making processes, especially when there are plenty of other autism-related organizations out there who do.

With their new campaign, Sesame Street certainly intends to have a positive impact on children with autism. But when real people with autism are telling them that the organization they've partnered with will ultimately do more harm than good, they'd do well to listen.

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