Have you heard of the Sesame Street character Julia? She’s one of the newest characters in the Sesame Street lineup, and when she was introduced represented what was perhaps one of the most important steps forward for broader autism understanding and acceptance. Julia is Sesame Street’s first autistic character, and one of the first openly autistic characters to be presented on a children’s television show. And perhaps most importantly, because this is so rare, Julia is a well presented autistic character. In a time when most autistic characters are flat and two-dimensional, Julia has real personality and a story. In a time when most autistic characters are portrayed by stereotypes, myths, and inaccuracies, Julia is perhaps the most accurate portrayal of an autistic person that’s ever been put on a TV screen (or at least as accurate as you can get when your character is a yellow muppet). In a time when differences are often vilified and all focus is put on autistic people changing to make others more comfortable, Julia openly stims and uses an AAC device to communicate and is celebrated for it. In a time when the average person’s idea of autism is a white, eight-year-old male, Julia is a female character, reinforcing that, yes, there are autistic girls! The segments with Julia taught children to be accepting of differences, how to be friends with autistic people, and put the focus on Julia as a real person rather than the abstract concept of “autism.”
Julia was a beacon of hope for autism acceptance, proof that we can build positive conceptions of autistic people and use it to teach the newest generation how to love, understand, and accept. Unfortunately, that beacon is now being snuffed out under the foot of ableism.
The good portrayal of Julia was no doubt due to Sesame Street working with the Autistic Self Advocacy Network when they designed Julia as a character and how she would be incorporated into the show. The Autistic Self Advocacy Network (ASAN) is an autistic-led charity organization that seeks to promote autism acceptance and inclusion. When they are asked to consult on projects they do a really good job, which surprises no one who understands that it is autistic people, not neurotypical “autism experts,” that know the most about autism.
Julia is part of Sesame Street’s “See Amazing” autism initiative, and fortunately up to this point the ASAN-created Julia has been its face and flagship forerunner. Unfortunately, Sesame Street also brought on Autism Speaks as part of their autism initiative. For those who are unaware, Autism Speaks may as well be called the “Anti-Autistic Network.” They are one of the most unapologetically ableist organizations currently in existence, and are reasonably despised by the broader autistic community. Autism Speaks calls autistic people “burdens on society,” “changelings,” “broken,” “defective,” and “missing.” They spend their budget not on doing anything that helps autistic people, but rather on funding “awareness” campaigns that use the above mentioned hurtful language, paying their non-autistic board members ludicrous salaries, and funding research into prenatal genetic markers for autism so that autistic fetuses can be selectively aborted. Autism Speaks is likely single-handedly responsible for much of the stigma that exists against autistic people. You can see a previous right up that I did on why Autism Speaks is so horrific here.
Autism Speaks has recently been able to manipulate Sesame Workshop into using Julia as a means to promote their “100 day” kit. The 100 Day Kit is essentially Autism Speaks’ idea of what parents of a newly diagnosed autistic child should do for the first 100 days after diagnosis. I do think that such a resource would be generally useful, but of course Autism Speaks fills its 100 Day Kit not with useful information for parents, but rather with a ton of ableism, false statistics, and fear-mongering. There’s a good analysis of the 100 Day Kit by the blog In the Loop About Neurodiversity (linked here), but I’ll just summarize some of the worst of this kit.
It lists several false statistics for the sole purpose of fear-mongering, such as by stating that parents with autistic children are more likely to become divorced (they are not). It also says that boys are four times more likely to be autistic than girls, but what it should read is that boys are four times more likely to be diagnosed than girls. Autism is likely no more prevalent in boys than it is in girls, though autistic girls present differently than autistic boys and so are less likely to be diagnosed than boys are. They trot out the “1/56 people are autistic” statistic and use it to justify calling autism an “epidemic.” And, as is a common trope with Autism Speaks, autism is erroneously compared to several serious diseases such as AIDS, diabetes, and cancer.
The kit suggests that parents sign their children up for therapies that seek to eliminate autistic characteristics rather than develop actual life skills, and suggests that the best outcome for an autistic person is to appear as “normal” as possible. Autistic children are described as burdens on their families several times. One testimonial from the kit has a mother stating that she would rather her child be diagnosed with terminal cancer than with autism, because people would be more sympathetic to what she was “going through” if her child had cancer instead of autism. The kit walks parents through “stages of grief” after receiving an autism diagnosis, as if their child had died. The kit also suggests that parents blame their problems on autism, suggesting (my paraphrase) “when you’re upset at your spouse, make sure you think about whether it’s actually just the autism you’re mad at.”
And lastly, the pinnacle of badness of the 100 Day Kit comes when it explicitly tells parents not to accept autism. One of the most important thing that autistic people have been advocating for is autism acceptance, as we honestly believe this will cure a lot of the obstacles we come across in society. And yet Autism Speaks has to step in and tell people explicitly to not do that.
So yes, Julia is now being used to push a disgusting “guide” that teaches parents to despise their autistic children. When Sesame Workshop began using Julia to promote Autism Speaks, ASAN tried to step in and prevent this damage from being done. And yet Sesame Workshop would rather listening to the ableists and martyr parents over at Autism Speaks rather than the autistic people at ASAN, and so they just doubled down on their Autism Speaks Julia advertising. ASAN made a tough decision and decided to completely sever their relationship with Sesame Street due to these events.
Sesame Street has announced it will begin introducing Julia’s family to audiences on the show. Due to the fact that Sesame Street is now fully under the control of Autism Speaks, many autistic people, including myself, fear that this means that Autism Speaks will now start to push the narrative they always push and begin focusing on what a “burden” Julia is to her family rather than what had previously been done with focusing on accepting Julia herself. So yes, thanks to Autism Speaks and Sesame Workshop’s complete unwillingness to listen to the autistic community, we will now be teaching our children to view autistic people as broken burdens and the cause of all of their family’s suffering rather than actual people to be loved, befriended, and accepted.
I am fumingly mad about this, and I regret it took me so long to write about this. All we can do now is rise up as a community and tell Sesame Workshop that we will not stand for this. Demand to be heard, demand a seat at the table, and maybe if we’re loud enough we can win Sesame Street back, just as we’ve previously been able to stop partnerships between Autism Speaks and Build-a-Bear, or Autism Speaks and Panera Bread. We will be heard!
Until then, I leave you with a meme I saw on Facebook that Star Wars fans may appreciate:
(Meme credit In the Loop About Neurodiversity)