Not In Love With Julia

Autism, Neurodiversity

Everyone might be tired of hearing about Sesame Street’s new autistic muppet by the time I post this, but before I wrote up a full review I had to make my way through all of the materials at the “Sesame Street and Autism” site. I watched all of the videos, either when the kids weren’t around or with headphones while they were otherwise occupied, because I wanted to screen them first before I let them view of it – and, yes, it is weird to have to screen Sesame Street, of all things, for harmful messaging, but such is the state of the mainstream dialogue on autism that I knew there were likely to be some things I would not want my kids to see or hear. And there were.

What is Sesame Street and Autism?

First, a brief explanation of what Sesame Street and Autism is and isn’t. There’s been a lot of hype about Julia, the new autistic muppet as I call her and “muppet with autism” as most of the press does. However, there is no actual muppet. There is one storybook, told from Elmo’s point of view, about a cartoon muppet named Julia. The rest of the site is “Resources for Parents,” which include: 10 videos – I would say 5 were mostly or sort of geared toward children, 5 geared toward parents, ALL geared toward neurotypical viewers; some short articles – 5 out of 6 are for parents, the 6th is for neurotypical children; and Daily Routine Cards, which are like short social stories, that could work for any child.

There is no balanced view of prejudice

For this project, Sesame Street gathered input from a couple of good sources, including ASAN (Autistic Self Advocacy Network) and Boycott Autism Speaks, and some ableist sources, which I prefer not to name because I find that the mere mention of them always derails the Sesame Street discussion into “but why don’t you like them?” and it’s not what I want to talk about here.

The problem for me with this project is that you can’t “balance” autism acceptance and positivity with ableism. The ableism corrupts the message of acceptance and makes it unusable at best, and counterproductive at worst.

Lost opportunity to do good

It’s sad because I really wanted to like it. I think having an autistic muppet IS a good idea and could have been awesome if done well. It would have been great if Julia was a real, felt-covered muppet, was part of the regular cast, and was the protagonist in her own story. It would have been great if she was fully incorporated into the show as just another character.

It would also have been great to do some of the live action videos about autistic kids, if the kids had been allowed to tell their own stories and interact with other kids and/or muppets on their own terms. It’s true that for this age range, there are many autistic kid who can’t yet tell their stories either by talking or by AAC (augmentative and alternative communication), but Sesame Street has always been able to work with typical preschoolers who don’t talk that much yet, so they know how to do this. There is no reason they could not do this with autistic preschoolers besides ableism.

It’s sad because there is a need for children to hear more about being autistic, inclusion, and making friends with people who aren’t like you. There is a need for more representation of autistic people in media and especially in kids’ media, because I would love for this generation of autistic kids to grow up feeling like they are accepted and part of the picture. (I love the Junot Diaz quote about reflection: “if you want to make a human being into a monster, deny them, at the cultural level, any reflection of themselves.”) I would have loved to be able to show my kids a good Sesame Street video about being autistic, but it’s not here.

Where they went wrong: a breakdown

As I said, I watched all the videos and read all of the articles and looked at a few of the Daily Routine Cards on the Sesame Street site. Throughout all of their material, they use “person first language” or PFL (person with autism, so-and-so has autism) rather than “identity first language” or IFL (autistic person, so-and-so is autistic) despite the fact that most autistic people prefer IFL. With that, they didn’t even attempt balance. PFL happens to be a total deal breaker for me. I can’t imagine ever telling my kids that I have autism or you have autism, because in that language, it sounds like I have a disease or a disorder, which I do not. I am autistic, which is the way I am and the way I experience the world.

Even if I could swallow PFL, there was plenty else that bothered me throughout the Sesame Street site. I’m going piece by piece to explain exactly what the problems are because I know that the uninitiated might not see what is “wrong” with this stuff at first glance, but I hope that if you are one of those, after reading this you’ll consider another point of view.

The Amazing Song

“The Amazing Song” was all right, and one of the few things on the site that I put in the “would show my kids” category. It wasn’t great but it wasn’t terrible, which is the highest praise I can give anything here. I love the footage of happy flapping autistic kids and the message that “we are all just kids and we all want to play.” The message of othering is not as prominent here but it’s still present in the lyrics “it’s harder to reach out as others do/ but when you just look closer you’ll see amazingness show through.” Whose point of view does this represent? In the second line it’s clearly the neurotypical person as the default narrator, just as it is in ALL of the material on Sesame Street. Even this song speaks to neurotypical children as the default audience and excludes autistic children. Bummer.

We’re Amazing 1,2,3

This digital storybook is the only place where Julia the autistic muppet appears, as a cartoon drawing. And yet, the book is told entirely from Elmo’s point of view, as he explains the things that Julia does and feels. Given the creative freedom of a fictional cartoon storybook, how is it that even in this format the autistic person can not be the narrator of their own story? Sure, most children are not autistic, but is that a good reason to sideline autistic children into always being the object of the story and never the subject? Sesame Street could, and really really should, do better than that.

Benny’s Story

Benny’s Story is a short cartoon and it is just okay. Aside from using PFL, it uses some positive language about being autistic. But Benny is really separate from the other kids and is never shown belonging to the group. It’s true that autistic kids like playing alone sometimes, but what about when they don’t? This video seems to emphasize being different a little too much. However, it is the ONE video told from an autistic point of view, albeit an autistic cartoon resembling a clothespin with a face. So, there’s that.

Thomas’s Story

This live action video about an 8 year old named Thomas had some great moments – showing how Thomas appreciates the little details of his environment, showing him using AAC to communicate, showing how he uses a service animal on outings.

But the bad moments were really bad, and I think are likely to trigger PTSD in some autistic adults who might watch this video. The worst bits were when Thomas’s dad keeps yanking him down by a leash at his waist when Thomas gets excited around the Abby muppet – I think this leash’s main purpose is to keep Thomas connected to his service dog, but the dad uses it for unnecessary restraints and that’s disturbing. Can you imagine a Sesame Street video where a parent claps his hand over his child’s mouth when the child starts speaking too loudly? – that’s more or less the equivalent of what Thomas’s dad does to forcefully quiet Thomas’s body language. After that, Thomas’s dad corrects how Thomas hugs Abby by taking his arms and moving them to do a hug the “right” way, which is also just yuck. And I wasn’t crazy about having the camera intrude on Thomas’s alone time when he said he needed a break.

But the larger problem with Thomas’s story is that it is told about Thomas by neurotypical people (and muppet). It’s very othering. Thomas has the ability to communicate through AAC; at the end of the video he gets a chance to chat with the muppet Abby, and he has a little back and forth with her. This could have been the main narrative, and should have.

A Sibling Story

Aagh! I just about jumping out of my skin seeing Yusenia’s sisters help physically restrain her so that her parents could brush her teeth and hair. Later in the video we see Jaslyn, one of the sisters, prompt Yusenia to stay calm when she excitedly goes to hug Abby the muppet. This video was aimed at kids but I would never it show it to mine, or really, anyone. Coercion and physical force are not normal parts of an autistic kid’s life.

Being a Supportive Parent

A video aimed at parents, this one featured Yusenia’s dad talking about supporting his wife because in raising an autistic child, “there’s probably not a day that’s not stressful.” (As opposed to life raising typical children, which is nothing but unicorn farts and rainbows from sunup to sundown, right?) The worst part of this one was when they showed footage of a very unhappy looking Yusenia at her 6th birthday party, the first year when she was able to blow out her birthday candle, after years of therapy. The dad is crying as he recounts this milestone, describing her as “typical fingers in her ears, zoning things out,” concluding with “it took her six years of her life to blow out a candle,” which is so dismissive and self-centered and, honestly, anti-autistic, that I just… You know, Yusenia is not sticking her fingers in her ears to ruin YOUR experience of her birthday party, dad, she is doing it to cope with the noise and basically put up with everyone else imposing their preferences on hers, so, get a clue.

Family and Friends

Family and Friends is a story geared toward parents and told by two women who have been friends for years, and now have kids who play together all the time. One of the kids is autistic. I would probably show this to an adult neurotypical friend. It was not terrible and I liked some of the one mom’s statements about battling stigma: “I don’t want to ‘sell’ him to anybody, like, ‘he’s autistic, but….'” Still, given that Louie can be heard conversing with various people in the background of the video, I do not understand why he wasn’t allowed to tell any of his own story. It would have been great to hear a 6 year old autistic boy tell us about his life and his friendships, but as far as I can tell, he wasn’t even asked.

Nasaiah’s Day

This video about a 4 year old autistic kid could probably make my “would show the kids” list but I would have to explain to them that, no, Nasaiah does NOT have to learn to look people in the eye. (Eye contact is a neurotypical social convention but if it makes a child uncomfortable, he should not have to do it any more than wheelchair users should have to “learn” to climb the stairs on foot.) Other than that this was pretty cute and I loved his singing clip with Abby in the end. More like that, please!

Meeting Unique Needs

Here Nasaiah’s mom just talks about her frustrations in raising an autistic kid. Bummer, they seemed nice in the other one. I did not need to see this.

Family Time with Grover

This video was just so odd, I don’t know how to describe it. A lot of it is video of Grover with twin autistic boys and their older neurotypical sister, but that’s intercut with the parents talking about their kids and their parenting strategies, so I don’t know if it’s for kids or for parents. It wasn’t horrible but it was just more of talking ABOUT autistic kids rather than WITH them.

A Parent’s Role

This is a CLASSIC parent complaining video. It’s all about Dad and how hard his life is. “The challenges for me… You don’t get to do what other dads do… [Louie] doesn’t say I love you… It’s tough handling the stress… It’s very stressful and draining on [my wife]…” And then he ends with “it’s been a blessing.”

I’m going to say something I know is controversial, but parents’ complaints about how hard it is to raise an autistic child do NOT need to always be shown. They don’t need to be part of every conversation about being autistic. Parenting is hard sometimes, yes. But this narrative of suffering only strengthens the stigma that autistic people face in the world. It helps NO ONE. Not even the person complaining. And certainly not their child.

Can you imagine Sesame Street making videos of parents of typical children complaining about how difficult it is to raise their kids? Can you imagine Sesame Street doing this with parents of kids with other disabilities? Somehow it is unique to autism that the “parents’ lives are hard” story must ALWAYS be included. It really does not have to be included. There is a time and place to talk about how hard parenting your autistic kids can be, and it’s the same place you talk about how hard parenting your typical kids can be, how hard your marriage can be, how hard your friendships can be – privately, with trusted friends and family.

Read More

There were 6 short informational articles, 5 of them for adults, all of them for neurotypical people about how to interact with autistic children and/or their parents. “Being a Friend” for kids was pretty nice but it was totally geared toward neurotypical kids. There is NOTHING here for autistic kids. They are just erased. This tells me that Sesame Street does not think their feelings and experiences really matter. They never do tell their own stories and they never are addressed directly by the materials here. It’s all about autistic kids, but it’s not for them.

Daily Routine Cards 

Slightly misnamed, these are short social stories about everyday tasks like getting ready in the morning and crossing the street. They work for any young child as reminders and/or “what to expect” stories. They’re the only thing here that actually include autistic children as the part of the audience. So… meh.

The Bad Outweighs the Good

I’m an idealist but I do have a pragmatic streak. I know that massive social changes take time, and autism acceptance is no exception. Is Sesame Street a step forward? I would actually say yes, but only insofar as it is an opportunity to talk more, publicly, about how far we still have to go. It would advance nothing to say “Oh, Sesame Street has an autism initiative. At least it’s something, we’ll take it, let’s not throw stones.” Nope. Throwing stones is also a needed step in order to move autism acceptance forward.

These are my stones. This website is not good. There’s too much that’s bad tipping the scales toward ableism and stigma. I hope Sesame Street listens. I think they can still fix this. Go back to the drawing board (literally and figuratively) with Julia, scrap everything else. Yep, scrap it. You made an autistic muppet, awesome. I love that she does happy flapping and loves to sing. Make her a real muppet. Make her part of the Sesame Street family. Let her talk instead of just talking about her. Let autistic kids see their reflection in her and feel that they are real people too, not monsters. Let them tell their own stories. Sesame Street has always known how to let kids be kids and they can do it again, and they can start now.

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157 thoughts on “Not In Love With Julia

    1. I think it’s a case of “hleping.” They want to help, but they either don’t know or don’t care enough to do it right.

      I do think Julia is a great idea, but we should have more stories from her POV. “We’re Amazing, 1, 2, 3!” is pretty decent for helping NT folks remove the stigma around autism (which is a major concern, because garbage like this is happening among the antivaxx crowd), but not really good for actually autistic people.

      As an adult who’s had ADHD her entire life (not the same thing, I know), this feels more like “How to put up with those people” rather than “What autistic people are like.” I’ve heard the ADHD version from my parents, and now I’m hearing the autism version from Sesame Street. What a letdown.

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      1. According to my insurance company that’s at 25. At least I shouldn’t need medication anymore at that point.

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    2. “What the hell did we do to them?” I’ll TELL you what we did to them … we existed: while not tripping their “fellow human” detectors.

      This is my hypothesis, based on decades of observation:

      People without autism have (or at least _behave_ as if they have) a finely-tuned and highly-specific “human being detectors/interaction manager” software/hardware package.

      A non-autistic’s neurological hardware/software suite is fine-tuned to recognize and respond to similar hardware/software in other life-forms.
      It’s like having a savant talent, but for people instead of numbers —

      — THE CATCH: the “people savant/people detector ” software (that runs a non-autistic’s interaction) doesn’t operate unless it processes the other human being[s] in the interaction as actual PEOPLE. And … the way the software/hardware package detects whether someone is “people” is by detecting the presence — or absence — of the “people detector” software.

      Neurotypical meets neurotypical: each person’s “people detector” detects the other person; each person “processes” the other person as “human being present”; interaction proceeds.

      Autistic meets autistic: no “people detection” software routine; interaction proceeds on other bases.

      Neurotypical meets autistic: neurotypical’s “people software” FAILS to detect corresponding “people software” in autistic; neurotypical’s software tells the neurotypical’s subconscious : “Warning! Warning! Human being ABSENT!” and subconsciously the neurotypical DOES NOT treat the autistic as human, because the autistic failed the “human detection” test (by not having the same software/hardware package that the test consists of & is built to look for). The autistic, not depending on the same software test, is prepared to treat the neurotypical as human … and does not understand being treated as non-human in return.

      The only way I know to get considered human, by a life-form running the neurotypical “human detection” package, is to unremittingly persuade the neurotypical to consciously ignore how his/her software package is screaming at him/her to process me as not-quite-human and/or not-quite-present. (It may be no coincidence that one of THE most frequent was in which non-autistics describe autistics is to say “He/She is just not ‘all there.'” I believe this is more than just an idiom: something within the neurotypical, quite likely, evaluates us as not REALLY present because we are not registering on their built-in ‘detection kit’ for detecting whether something that LOOKS human really IS human. We are human, but we don’t have the particular configuration that the software kit is programmed to search for … so we register as anything BUT “human and present.”)

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  1. Thank you for posting this. I am Autistic, I don’t have Autism. As someone who regularly had a hand put over their mouth growing up I get the comparison. If my mother herself (no longer speaking) she would complain just like these parents. Blindness, and other physical disabilities understand that isn’t the child’s choice to be the way they are. But when it comes to Autism, ADHD, and other brain disabilities parents don’t get it. I also saw this with a friend who was higher functioning, but had fetal alcohol syndrome. They insisted that if he would have just tried harder he would have been “normal”. Not seeing that was his normal. My Autistic normal is my Autistic normal. Not anyone else is.

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    1. @charliejenny; It’s not just parents that don’t understand, it’s everybody else that doesn’t understand, too. Nobody seems to want to give a frack about understanding autism at all, in particular Aspergers, and so, all of the bullshit that bedevils our lives as autistics happens because nobody understands what we are or how we do things.

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      1. I wouldn’t put all parents in the same boat. my son is 5 I found out he was autistic when he was 3 1/2 I read everything I could get my hands on to understand autism. I felt my son’s pain when I left my son at daycare full of neuro typical toddlers. Workers keeping him away from other kids while he played by himself. Kindergarten is starting in September and I am really worried that his teacher won’t understand him,won’t be able to see when he is getting overwhelmed, why he throws himself to the ground when he doesn’t want to go potty. It’s probably naive of me to believe in a world where all children are treated equally, it’s so much easier to judge than to understand. sometimes all they need to make their lives easier is a comforting word or a hug.

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  2. Thank you so much for the thorough review. Sounds like there’s a lot here that I won’t be wasting my kids’ or my own time on. I had high hopes for this, but I’m not too surprised. Definitely disappointing.

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    1. Oddly, while I actually agree with everything in this article, I still really appreciate what Sesame Street is doing. I think what it comes down to is everyone is different, every family is different, there is no way Sesame Street can please everyone when it comes to autism. But… It can help promote understanding and acceptance and I think that’s great.

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      1. I sent an email to their “See Amazing” program, indicating that Julia’s POV should also be incorporated, so that autistic kids are reassured that their stories and perspectives matter.

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  3. I agree. I also serched for signing to their newsletter, and surprise,surprise!
    You can submit as health care provider/educator OR as a family member. Autistic people? Nope.

    I liked the storybook and the song, but the rest was quite meh, and the site wasn’t built really well – but it was not bad.

    I was really disappointed with the fact that where was nothing for autistic children. And the rutine cards was quite dissapointing too. They showed the kids as very passsive, and not really participating in things. When I was that age, I really liked participating in things, and the kids are just so… passive. It is ok, some kids are, but I wanted some diversity.

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  4. Thank you Erin. I completely agree with your analysis of the content. I too wanted to share this with my children but nope. It isn’t for them apparently. The PFL ruined even the decent stuff.

    Also, though the boycott kicked down the door for ASAN and other more balanced partners, we were excluded from participating in the content reviews, which is a shame. The boycotters are particularly sensitive to the very errors that Sesame made, and would have been excellent at confronting the issues.

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  5. Thank you so much for putting my thoughts into words. I’ve been sharing this post on every single FB post that mentions Julia. And have had a lot of positive feedback. It still amazes me that issues that are so obvious to me, as an Autistic, needs to be pointed out to those who are not. It has certainly made people think. Here’s looking forward to the day when Sesame Street sets things right, including making Julia a real muppet.

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  6. I disagree about your stance on ‘We’re Amazing 1-2-3.’ I think having the story told by Elmo makes it easier for kids to embrace the idea of being friends with autistic children if they see ‘one of their own’ (and by the end of the story it was two of their own) having a great friendship with someone on the autism spectrum.

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      1. I mean, I feel like they’re doing a good thing here (there are tons of books for typical kids, but how many are about being a friend to autistic kids? not enough IMO). But I agree — creating something FOR autistic kids should have been a higher priority.

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  7. Yes yes yes! This is everything I thought about the site as well. It is not up to Sesame Street’s established standards and it is not FOR the kids. Autistic kids need their own voice.

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  8. Thank you so much! My husband is autistic and he also felt off about this story but couldn’t express it in a way I could understand (which really isn’t his job). I also felt it was off as it didn’t show her side of things but I really wanted to understand where my husband was coming from. Sharing this article with my husband and having him say every few minutes while reading it “yes, oh my god, yes” really, really means so much to me. As his wife I want to understand where he is coming from so that I can communicate better with him. You helped me so much to understand this issue and to understand him. A million thanks for a beautifully written piece!

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  9. Thank you. Thank you so much, as an autistic parent raising an autistic daughter. I only made it through Thomas’ story, so seriously. Thank you for watching and reading and giving honest and detailed feedback about what was good (very little) and what was lacking (A REALLY FUCKTON OF STUFF).

    I confess…I blew it off when Sesame Street announced this basically because…that’s usually NOT how they do things like that. They introduce new characters, but never make such a huge deal out of it. It felt…not right to me, from the beginning.

    I’m 41 years old and it really does make me sad and disappointed to be let down by Sesame Street, as ridiculous as it sounds.

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  10. Thank you SO MUCH for watching all this crap so that we don’t have to. This in particular really REALLY spoke to me (maybe I should say that I am not autistic but my son is):

    “Can you imagine Sesame Street making videos of parents of typical children complaining about how difficult it is to raise their kids? Can you imagine Sesame Street doing this with parents of kids with other disabilities? Somehow it is unique to autism that the “parents’ lives are hard” story must ALWAYS be included. It really does not have to be included. There is a time and place to talk about how hard parenting your autistic kids can be, and it’s the same place you talk about how hard parenting your typical kids can be, how hard your marriage can be, how hard your friendships can be – privately, with trusted friends and family.”

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  11. Reblogged this on Haddayr Copley-Woods and commented:
    She watched this so we wouldn’t have to. I was encouraged by their partner organizations, so I am disappointed. I especially call your attention to this: “Can you imagine Sesame Street making videos of parents of typical children complaining about how difficult it is to raise their kids? Can you imagine Sesame Street doing this with parents of kids with other disabilities? Somehow it is unique to autism that the “parents’ lives are hard” story must ALWAYS be included. It really does not have to be included. There is a time and place to talk about how hard parenting your autistic kids can be, and it’s the same place you talk about how hard parenting your typical kids can be, how hard your marriage can be, how hard your friendships can be – privately, with trusted friends and family.”

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  12. I agree with your overall analysis of the new site. However, I think I you are examining it from the perspective of someone who is EDUCATED and FAMILIAR with Autism.

    I am an SLP graduate student and prior to earning my bachelor’s degree I only had a slight understanding of what Autism was. This site would have been GREAT for me as a teen who only ever had minimal contact with a person with Autism.

    As for referring to “autistic children” as “children with Autism” or “Thomas has Autism”…They are using the correct, “professional” way to refer to children with Autism, because saying “autistic kids” then allows that and that alone define them. Yes, however, in reality it is not the way we identify someone as having Autism in everyday conversation.

    With that said, I can see where the creators behind this are coming from. They’re aiming to raise Autism awareness. When first learning about Autism, it would be confusing for the general public to only be exposed only to Thomas communicating with his AAC device. While it is wonderful that he is communicating, he does not yet and may not ever have the mastery to narrate an entire video segment.

    I commend Sesame Street for taking a step in the right direction. Was it perfect? No. But they are directing this toward introducing Autism to neurotypical children and adults. It is laying important groundwork for the future.

    I predict the creators will add in more videos and storylines with Julia narrating in the future, once neurotypical children have developed an understanding of what Autism is and different communication styles.

    Yes, it does cater toward neurotypical children, which is unfair and may initially seem disheartening, but I am not discouraged by all this. Hopefully in the future, Julia will be made into a puppet. In order to make a great change, small steps must first be taken.

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    1. Yes, I am educated and familiar with autism – that’s why my voice, and other voices like mine, need to be a bigger part of projects like this. “Awareness campaigns” are useless if they are based on misinformation and if they perpetuate stigma against the populations for which they are raising awareness. Another thing to think about is that awareness campaigns are generally used to raise awareness and funds to cure diseases… which is exactly why they are not suitable to autism, which is NOT a disease and does NOT need to be cured even if it could be, which it can’t.

      Person first language is indeed the standard among professionals, but that does not mean it is correct. The correct terminology is the terminology that is preferred by the people you are talking about, and most autistic people prefer identity first language. Most, but not all; so I would have settled for a mix of both on SS, but they chose to use PFL exclusively, which tells me who their initiative is for: not autistic people. And I don’t buy the argument that calling myself autistic means that alone defies me; I also call myself a woman, a wife, a mother, and none of those things are the ONLY thing that defines me, yet I’m allowed to call myself those words.

      I agree that small steps must be taken, and criticism is an important step too.

      If it seems I’m being harsh with you, just know that yours is one of the few dissenting opinions I’ve let through my moderation software, because you at least disagreed with me respectfully, and I appreciate that.

      Liked by 1 person

      1. Perhaps one of the good things that will come out of the Sesame Street series is more discourse like this. Before having children, I worked in special education. We were taught to say, a child had autism. Having an autistic son of my own and knowing all the other autistic people in our immediate community, I have to say my autistic son and autistic people because it is so clear being autistic is as much a part of who they are. If my son was not autistic, he would not be the amazing, wonderful, human being he is. His strengths and challenges would be completely different strengths and challenges. He wouldn’t be doing the things with his life that he is, he’d be someone else altogether. Any I love who he is. I wouldn’t want him to be someone else. My heart would break if he were suddenly someone else.

        I’ve read more anger coming from people who feel that Sesame Street is normalizing autism and not acknowledging the pain it causes families and autistic people themselves. My reponse to those people is, given that autism isn’t something that can be cured, the best thing that could happen is for people to have more understanding and acceptance of autism. If what Sesame Street is doing and if conversations like these lead to more understanding and acceptance, that’s a good thing. Whether it’s the high functioning child who is picked on in school and suicidal over not having friends or the parent who is afraid take their child out in public because of the judgements they get about their child’s behavior, or the low functioning child who is being forced to conform by parents and schools who are trying to make them fit in… Understanding and acceptance could make everyone’s life so much better.

        Thank you for encouraging people to share in this kind of discourse.

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  13. I appreciate this article and point of view very much. I saw the video and some of the content on their site and found it somehow unsettling but couldn’t put words to why. You’ve explained this very well. Thank you!

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  14. I was disappointed with Sesame Street’s initiative too.

    I was hoping for something that would make it easier to educate friends, family, and loved ones who are sometimes confused by the behaviors of my autistic children. I was especially hoping that it would give me a tool to address questions from their elementary school children. Kids that age have an inexhaustible supply of curiosity, – but I am often at a loss to provide them with a meaningful explanation.

    Can you give me any advice or point me in the direction of resources or existing material that covers this? I wish I knew how to condense my feelings and understanding of my children into something easily communicated.

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    1. I really don’t think there is too much out there yet for kids. I actually am working on writing and illustrating a book for all ages that would serve this purpose. Reviewing Sesame Street materials was also good research for me and got me thinking about ways to revise my draft, specifically to tell the story from an autistic point of view even though the audience will be neurodiverse.

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      1. The best kid friendly book that I can think of is “I Love Being My Own Autistic Self” by Landon Bryce. It’s not an educational book per se but it’s really the best thing I can think of that exists to help educate non autistic kids about autism (and adults too!)

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  15. Reblogged this on hereirawr and commented:
    Great review of Sesame Street’s new approach to autism (Julia, the new muppet, website materials, stories and videos). It needs some significant work to truly be empowering to spectrum kids. Excellent breakdown, all they need to do is follow her advice…

    Liked by 1 person

  16. While I do find some of your thoughts and opinions agreeable, such as the I have autism instead of is autistic, and that they need content for autistic kids not just about autistic kids, I do see their point also. The set out to create a website or page about autism acceptance and to inform parents and NT children about autistic kids. I wish some people in the community would go to this site and watch some of the videos.(show some to their kids) I wish the people who stare at my child and point at him or say “what’s wrong with him” when he is overstimulated and flapping or verbally ticking would use this site to see that their are children out there that do these things but that they are just children and they are amazing and special just like all children are. I wish people would ask instead of “what’s wrong with him?”, why does he do that or is there something he needs”. I know I would love a chance to have a conversation sometimes about his amazing mind and self instead of the pointing and starring. I also realize it would have been amazing to get the childs point of view but I also realize that sometimes this isn’t always possible. So I do agree with some of the things you don’t like but I also think this is a step in the right direction.

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  17. Erin, I typically do not respond to articles on this Sesame Street initiative however, yours struck a cord with me. I totally agree with you about PFL. That said, I feel the need to make it clear that I was by no means complaining about my ” frustrations in raising an autistic kid” as you so “knowingly” put it. I was however asked if there were ever difficult moments (of which there are many) on MY journey with MY kid and to give an example of such…..I’m sorry if that somehow doesn’t make me a nice person in your book. But then again you don’t really know ME–bummer! Moreover, since when is someone sharing their own personal experience automatically complaining or letting out frustrations? Why cant it be just that…….sharing?! And for the record Nasaiah is free to make eye contact whenever he chooses in our family. Like you said he shouldn’t have to and with us he does not have to!

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    1. I thought your family seemed accepting and encouraging in the family footage. It’s really great to know that Nasaiah does not have to make eye contact. It sounds like Sesame Street workshop chose to present your family in a certain way (talking about learning eye contact and the challenges of raising autistic children, even the use of PFL) that do not necessarily reflect the way you really are. I stand by my criticism of the videos but you’ve made me realize that I could have been more careful about critiquing the people in them. I know that the media lens can be distorting even in documentary style productions but I did not hold that in my mind as I was watching and then reviewing. All my best to you.

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  18. Thank you so much for this. I was really hoping SS would do well with Julia, but it sounds like they have a long way to go. It’s so hard to tell about peoples’ intentions on edited video, so it makes me wonder how much prompting and editing was involved in the videos of parents who were complaining about their kids. Whatever the situation, the videos shouldn’t have been presented that way. Like you said, it’s hard to raise kids. All kids.

    My cousin, who is 9, is autistic and speaks very little. He communicates mostly through sounds and hand flapping, makes little eye contact, and hugs without wrapping his arms around me (sometimes he doesn’t want to hug at all.) I have been fortunate to know other autistic people who each experience it differently, so that has helped me understand where he’s coming from. If other family members try to make him hug me “correctly,” I tell him that his hugs are great. I want him to know that I’m trying to show him respect as best I can, without him being able to always verbalize what makes him comfortable or uncomfortable. I’m trying to pay attention to the other ways he communicates, and learn his language.

    I have to say, though, as someone who has been considered a person with special needs, as someone who has always been taught that my illnesses and conditions don’t define me as a person, and as someone who has used both PFL and IFL to describe myself (but PFL first in reference to others out of an attempt at respect,) the light bulb about PFL and autistic people didn’t go off for me until very recently. Most of the autistic people I know and have known are either too young (and/or I was too young,) or don’t speak enough for me to have had that conversation with them before. I’d mostly heard neurotypical people describing autistic people as “people with autism.” So, I wasn’t aware until recently that most autistic people prefer IFL. I still know that it’s always best to ask the kind of language someone prefers when I can, but I won’t always be able to do that, so that’s good to know. Autism creates such a unique experience, so it makes complete sense. Personally, I’ve always preferred to call myself epileptic, but a person with anxiety/depression/fibromyalgia/heart issues, etc., so I understand the various reasons different people with the same health-related issues have for wanting to use different kinds of language at different times. I just didn’t have the opportunity to learn, specifically, about how that language relates to autism. I’m so glad I know now. I hope Sesame Street gets on board, too.

    Liked by 1 person

  19. your critiques are well founded and I appreciate the efforts and insights. However, in this day when neighbors want autistic children labelled as “neighborhood nuisances” and internet trolls immediately latch onto developmental disabilities as the reason for mass murderers, I’m happy that Sesame Street is at least trying to educate the next generation to be kinder and more inclusive.

    Like

  20. Although I agree with you with a majority of things on here. There is a huge issue I also have, I understand you like to be called autistic rather than make it out to have a “disease” there are a million other diagnoses out there that doesn’t have such a nice way to put it. My daughter has ACC it’s often misdiagnosed as autism so I seriously relate with the autistic community as I go through almost all of the same struggles. I can’t say my daughter is acc-ic I have to say she has acc, to say anyone has anything should not be an issue. We want everyone to be accepted regardless of what they are or have. Why is it so horrible to say you have autism. As a special needs community we should all stick together and that community also includes children with diseases. Our message should be to be accepting of everyone why is everyone so focused on that, there’s much more to talk about here.

    As for the rest of the article, I completely agree. They are making her out to be different from “typical” kids, instead of focusing on that ALL kids are diff typical or not.

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    1. Hi Amton, I object to pathologizing language about autism because it is not a disease, it’s a normal human neurological variant (albeit a disabling one), and attempts to treat or cure one’s basic neurology can be both dangerous, and hinder acceptance. However, I totally see your point that I should be careful of making chronic illness out to be an “other” and be mindful of the broader disability community… People who do have chronic illness also need acceptance and understanding.

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  21. As the parent of an autistic child, I don’t agree completely with what you’ve said above, but I think it’s good that you are communicating your take so that Sesame Street (and other organizations) can take it into consideration. It is very hard to create any initiative that would suit everyone, though, and personally I really enjoyed the storybook because I was looking at it from the perspective of what my daughter’s future friends will take away from it – namely, that an autistic child’s behaviour is different, not wrong or bad or unfriendly.

    I do have one concern about addressing the PFL/IFL issue, and I’d love to hear your response to this. I think it’s a bit unfair to critique an organization for choosing to use PFL in a campaign specifically dedicated to communicating to kids that autistic kids are kids like them – that’s pretty well the definition of person-first. I know many older autistic kids and autistic adults express a preference for IFL, but that’s surely not universal. If you have a group that prefers one and a group that prefers the other, how do we appropriately represent both sides? This is an honest question that I’ve struggled with several times since my daughter was diagnosed last year. (She’s not old enough to express a preference; when she does, I will honour her choice.) What’s your take on how to choose what language to use when you have a large community that doesn’t have a consensus about what terminology is preferred.

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    1. Thanks for asking Katherine – even though I strongly favor IFL, it would have been reasonable to mix the two throughout the site. That’s what many platforms do when they have a broad audience. In my view, the word “autistic” only has a stigma if we stigmatize it and avoid using it. It doesn’t say everything about me, but neither does “woman,” “mother,” “blogger,” all words that no one seems to mind me calling myself. Because they are neutral or positive. The same way I (and many others) see the word “autistic.”

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      1. Thanks for your response! I’d agree that mixing terminology sounds like the best compromise to incorporate all preferences. Hopefully Sesame Street and other organizations will keep possibilities like that in mind as they develop more resources.

        Like

      1. “PFL” abbreviates “person-first language,”
        which refers to phrases such as

        “person with _______”
        or “person who has _______ ”
        or “person who is living with ______ [autism, blindness, dyslexia, left-handedness, youth, giftedness, or other characteristic of some humans] ”

        “IFL” abbreviates “identity-first language,” which refers to phrases constructed instead in the normal English way:

        e.g., “gifted child” rather than “child with giftedness” —

        “Jewish neighbors” rather than “neighbors with Judaism” —

        — or “autistic person” rather than “person with autism.”

        Although I strongly prefer the second way of expression, I equally strongly reject the descriptor “identity-first language” (IFL) for it — because my identity is NOT any of the ways in which I am like someone else.

        Instead, I think of this more natural way of using the language (IFL) as “Inclusion-First Language” — being INCLUDED in the human race by having our characteristics described in the normal English way, like anyone else’s characteristics. (I’m not a “person with autism” for the same reason that I am not “a person with Americanism” or “a person with Judaism” or “a person with femaleness, giftedness, heterosexuality, and brunettism.”)

        For the same reason, I think of “PFL” as in fact being “Pointing Finger Language” — constantly pointing a finger at the trait that’s being stigmatized and set apart. (Think of how you’d feel if others called you “a person with [maleness/femaleness, Americanism/Canadianism/Mexicanism, etc.”]

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  22. THANK YOU! I could not find any Autistic’s blogging about this when I wrote mine…and to be honest I didn’t watch every segment for my review because I felt overwhelmed…I tried to stay positive because it was way more positive than Autism Speaks…but who are we kidding- that should not be the bar I put positive experiences up to! So If you don’t mind I added your review to the top of my post as its everything I wanted to say and couldn’t ( though I did cover the birthday candle thing exclusively) Oh man the leash! I forgot about that video and it REALLY bothered me! Thank you for writing this…Please send it to Sesame street in the contact us form if possible? They need to hear other Autistic Voices!

    Like

    1. Yes, I did send it to Sesame Street too. 🙂

      I read your post, and wanted to tell you that I found out “Benny’s Story” was not only animated by autistic artists, the story itself was written by an autistic man. So that probably explains why it was the most relatable and the only one told from an autistic point of view.

      I also agree with you about birthdays in general, and I have read a few other autistic bloggers who’ve said the same. 🙂

      Like

      1. yes that is probably why we related more…I think because I am not on Facebook I am not as well connected to the greater autistic community to hear about these things- like other bloggers feelings on birthdays! ( though I am friends with cynthia and Sam…and have three good autistic friends outside of my family) but I would love to follow more blogs and am adding yours to my list as I had not discovered it prior to my friend sending it…and I love what you have to say!
        I am so glad u sent this to sesame street too:)

        Like

  23. Fantastic article. Thank you so much for your specificity and thoughtfulness. I love your perspective. I’d be so curious to know whether Sesame Street gets back to you! Anyway, thank you again.

    Like

  24. Sesame Street has always gone above and beyond with childhood education and entertainment. When watching Barney I would see a gap between his costume and feet and think to myself that this is something Sesame Street would never have overlooked. They have always taken the care and tact to make quality children’s shows and not insult parents with half-assed programming focused on a profit. While I can understand that they have maybe missed the mark on Autism a bit, I applaud them for being pioneers. They are speaking to the majority of children who are not Autistic on how to understand and accept differences in their peers. Yes, no two kids are alike and that doesn’t change with Autism. No two children with autism are alike. Julia is not a stereotype. She is a unique, individual- diagnosed with Autism. As a parent of a child who is not Autistic, and as a parent who preaches acceptance and love, I think this book can be so beneficial of acceptance and understanding. I don’t think Sesame Street is saying this is what all children with Autism are like. I think it’s saying Julia is not like other kids, she has a name for why that is, it happens to be Autism ( which is a word you have maybe heard before) and we are patient and loving with her as we are with anyone else. I hope sincerely that I haven’t offended anyone. I am speaking out as a mom in favor of peer support for autistic children. I am in favor and I think if we can let down our guard a bit we will see that the world is changing in a good way. Maybe it’s off, (I’m ignorant) but a step in the right direction.

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  25. I think you missed the point. Your multiple complaints about it written from the neurotypical view or for the neortypical reader is the point! That’s exactly what they meant to do. The initiative is to inform the neurotypical world of some of the basic about kids with autism . So society as a whole- beginning with children. Can start learning about how autism manifests itself in people and children with the end result being the kids with autism are better understood by society and one day not be “the weird kid” or the bullied kid.

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    1. I think “you missed the point” is an extremely condescending way of disagreeing with someone. I did not miss the point, rather, I think the point is wrong. Can you imagine Sesame Street having a “racial initiative” or a page called “Sesame Street and Race” where white people explained to a white audience what non-white people are “like?” Autistic people can speak for themselves, whether by talking or by other ways of communicating.

      As for bullying, it is not the job of autistic people to “not be the bullied kid.” That’s like saying we should stop sexual assault by telling women not to wear short skirts. It’s up to bullies to stop hurting other people: http://davehingsburger.blogspot.ca/2015/10/the-answer-to-answer.html?m=1

      Liked by 1 person

      1. I wish there was a way to “like” comments here…so so many I just want to respond to with a “Yes, yes THAT!!” But it would be unnecessarily repetitive, and I feel disrespectful to your space and so I refrain.

        This comment and your reply I could not refrain from. Better you reply than me, and better I should simply say, “Yes. This.”

        Liked by 1 person

  26. Thank you for the wealth of info! Found your article and blog on Twitter and linked to it from our own blog. I really appreciate you taking the time to review all this material and share your impressions with us!

    Like

  27. Here is how to reach a SESAME STREET employee who works on their autism project and is a self-proclaimed “autism daddy” married to an “autism mommy” —

    autismdaddy.fb@gmail.com

    He blogs as “Frank the Autism Daddy” — I don’t know his surname.

    His Facebook page and blog (favorites of “autism parents”) are:
    https://www.facebook.com/AutismDaddy
    http://autism-daddy.blogspot.com/p/about-me.html

    So send those e-mails, Facebook comments/messages, and blog-comments!

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  28. I don’t want to detract from the debate in these comments, but the media refers to the muppet as a “muppet with autism” rather than an “autistic muppet” for a reason. When you say an “autistic child,” or a “disabled child,” you are defining those children by their mental or physical state – not by the fact that they’re children. In this case, as the muppet is representing a child with autism, it’s important that you adopt that language instead.

    It’s not just about PC, it’s about dehumanizing. Something to keep in mind, especially in a blog that calls out ableism. What’s important to you – that a child (or muppet) is autistic first, or that he or she is a CHILD first?

    Like

      1. Sending a letter to the above e-address does, immediately, get a form letter back — which is more than I’ve ever gotten from writing to SESAME executives/staffers or from using their site’s “Contact Us” page. So, someone MAY be reading what we write to autism@sesame.org

        Liked by 1 person

    1. Jozie — the day I call myself, or anyone, a “person with autism” will be the same day I call myself “a person with heterosexuality, Judaism, Americanism, and femaleness.” Do I have to call you a “person with femaleness” to see that you are a person?

      Liked by 2 people

    2. Fun(ny) fact about “person first” — when you say “person with autism,” the loudest word is “autism.” When you say “autistic person,” the loudest word is “person.”

      Liked by 1 person

    3. Jozie —

      It is disturbing to me that you believe you wouldn’t remember an autistic child is a child unless you changed his adjective to a prepositional phrase. What does this say about your perceptions?

      Liked by 1 person

  29. Here’s an idea: how about we turn the tables? We have all of this media, showing how difficult it is for neurotypical people to deal with autistic people… so, how about we do the same thing, but in reverse? You know, instead of media showing how “hard” it is for neurotypical people to have to “put up with” autistic people being “awkward,” how about we show how hard it is for autistic people to deal with neurotypical people always trying to assimilate us and impose everything they want upon us? We can show some of the struggles that autistic people go through, and how insulting and terrible it is for our struggles to be represented in the way that Sesame Street tried, with the power of parody!

    Like this example from my own life, turned into a parody: I’d just be minding my own business, reading a book, drawing, surfing the web, talking online (I have some speech difficulties, so talking online is kind of the only voice I have) with friends and/or discussing ideas with people I meet online, contemplating to myself about formal science or figuring out how to improve on the methods of Jungian psychoanalysis to better account for non-neurotypical people like myself, or something else. Then, some neurotypical people would come along: maybe some guy repeatedly shouting “SPOOOORTS” at the top of his lungs, or a bunch of people repeating the same phrases over and over again in a conversation about a topic so banal and vacuous that it’s basically an excuse for them to hear their own voices, and they’d all intrude on my life, interrupting what I’m doing and insisting that I’m doing something wrong, or that I’m less of a person, or that I’m somehow bothering them, simply because I’m not bending over backwards to conform to what they want. Then, it would cut to me in one in a segment in the style of the “complaining videos” mentioned in the blog post, and I’d talk (either through text, or maybe an actor playing me or something) about how hard it is for me as someone who has to deal with neurotypical people.

    It could even go after the idea that autistic people have poor social skills and an inability to read non-verbal cues, by pointing out how the neurotypical people misinterpret or otherwise are unable to read the social cues I show. You know, like pausing what I’m doing for a couple of seconds to look up at them with an expression that’s either halfway between “poker face” and “grumpy cat,” or otherwise just glaring at them, before going back to what I’m doing; the times I’ll say “meh” or otherwise grunt in a disinterested manner, which will get more intense and laborious every time, until I’m eventually doing a perfect impression of a wookie with throat cancer; the wincing I make when one of them speaks in a way that’s extremely patronizing to me, as if they’re talking to a kindergartner; and otherwise showing absolutely no interest or excitement at the idea of becoming one of them.

    (Obviously, I know that a lot of autistic people want to make friends and associate with others, and struggle to do so, and my example doesn’t show that; as such, a parody of this sort would have to include examples of that, as well. As a person with high-functioning autism myself, I would like to connect with others, and I struggle to do so; however, I also know that there’s a difference between “forcible associating with people you can’t stand” and “having friends,” and I’m pretty comfortable with the friends I have already.)

    Like

    1. My own “turning the tables” practice is (and has long been) to refer to non-autistics as “people without autism”: especially when I’m speaking directly to them, and ESPECIALLY when I know that the ones I’m speaking to are people who prefer/demand PFL (which they call “Person-First Language” and I call “Pointing-Finger Language).
      After all, if they think calling me a “person with autism” equals respect, they can have no objection to me calling any of them a “person without autism” ..l

      Liked by 1 person

    1. That’s pretty awesome!! I’ve seen your relentless hunt for answers to the questions and concerns that autistic people have in regards to this Sesame Street initiative!!

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      1. Sending a letter to the above e-address does, immediately, get a form letter back — which is more than I’ve ever gotten from writing to SESAME executives/staffers or from using their site’s “Contact Us” page. So, someone MAY be reading what we write to autism@sesame.org

        Like

  30. Does anyone else here find an unfortunate “hidden curriculum” implication in Julia’s not being allowed to move into a neighborhood (Sesame Street) whose community standards have long been adequately met by someone who lives in a garbage can?

    Liked by 1 person

      1. Interestingly, the reason that SESAME’s producers eventually decided to make Snuffleupagus be real (and therefore “believed in” by the neighbors, not just by Big Bird) was that SESAME’s producers found out that Big Bird’s failure to get others to believe in Snuffleupagus had been accidentally teaching children that they, too, wouldn’t believed if they had anything unusual and/or important to tell. So … what lessons are kids learning when they read a book about a character (Julia) who is only ever real INSIDE JUST THAT ONE BOOK that’s about people misunderstanding her? In the book, she’s in the neighborhood (having problems that other people have to solve) — but everywhere else in SESAME-world, she simply isn’t. It is as if people like Julia are only ever allowed to be real whenever others are using them as a lesson in kindness.

        Liked by 2 people

    1. @kategladstone-I think that we as autistics need to write Autism Daddy as well, and tell him that he’s full of it and that he needs to change how he sees his child and others who are autistic, Whether or not he’ll listen to us, is debatable at best, but at least we can try.

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  31. And you can bet that:

    /a/
    the next autism conference you attend WILL have a “See the Amazing” booth, manned by staffers cooing about how inclusive this all is,

    and

    /b/ one of those staffers will be under a six-foot-tall Julia costume.

    It would probably be interesting and educational for people to go up to Julia and ask her where she lives on Sesame Street, and other questions of that sort, in the hearing of her booth-staffers and of the multitudinous visitors and passers-by. If I undertook to do this, I would be as polite as polite can be — not loud, not nasty, but clearly audible. It would be wondrous to hear how “See the Amazing” people (including whoever got picked to wear the Julia costume) answered pertinent questions with (for example) small children present.

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  32. /1/

    Great response (below) from SESAME’s Jeanette Betancourt — who now, please note, writes “autistic children”!

    She wrote this to me after a couple of my Autism Society contacts (Scott Badesch and Michael Leaver, who share my concerns) visited her and, apparently, mentioned the letters they knew I’d written her and other SESAME executives.

    [Note: below, I’ve trimmed sign-offs — hers and mine — to save space. I’ve also snipped out my original letter, as it was long & simply summarized, with credit where due, the points made here & elsewhere.]

    ———- Forwarded message ———-
    From: Betancourt, Jeanette
    Date: Friday, October 30, 2015
    Subject: Julia, “See the Amazing,” and your request to “hear from the autistic community.”
    To: “Handwritingrepair@gmail.com”

    Dear Ms. Gladstone and Mr. Harber,

    Thank you for your correspondence to several of us at Sesame Workshop. Scott Badesch and Michael Leaver were kind enough to share your concerns with us as well. We are grateful that you reviewed the initiative and each of the components, and sent us such thoughtful feedback. Your insights and recommendations are extremely helpful as we consider additional components or activities around this initiative. As we proceed, we want to make every effort to demonstrate the diversity of the autism community. We highly value our partnership with the Autism Society and other partners, as well as input from the community. All of this will to continue to guide us in how to have the greatest impact, especially for young autistic children and their families.

    Respectfully,

    Dr. Jeanette Betancourt

    /2/
    For the sake of completeness: my response to Dr. Betancourt …

    ———- Forwarded message ———-
    From: Kate Gladstone
    Date: Friday, October 30, 2015
    Subject: RE: Julia, “See the Amazing,” and your request to “hear from the autistic community.”
    To: “Betancourt, Jeanette”

    Thank you for your reply! My husband thanks you too! (By the way, his surname is spelled “Haber” — rhymes with “neighbor” — not “Harber.”)

    It was good to see a response — and I thank you for recognizing, and using, the increasingly chosen language of more and more autistics (“autistic children/adults/people/etc.” rather than “people/adults/children with autism”).

    I look forward to seeing Julia, and others in this project, fully included in SESAME STREET — and telling their own stories. Your response lets me trust that this is being worked on.

    /3/ Her welcome response to that:

    ———- Forwarded message ———-
    From: Betancourt, Jeanette
    Date: Friday, October 30, 2015
    Subject: RE: Julia, “See the Amazing,” and your request to “hear from the autistic community.”
    To: “Handwritingrepair@gmail.com”

    Dear Ms. Gladstone and Mr. Haber (thank you for the correction),

    I appreciate your very kind response and continued guidance.

    Regards,

    Jeanette

    Like

  33. Nasaiah shouldn’t have had to make eye contact, you say. I add to that that Thomas shouldn’t have to do high fives on cue. IT bothered me a lot that his father was so disgusted when he didn’t.

    People are weird about autism. I am 58 and recently my psychiatrist told me I might be autistic, but at my age and with my particular characteristics I’ve figured out how to cope well enough that it’s not worth pursuing unless i really want to. I mentioned this on Facebook, thinking it was no big deal. a friend of decades was so hateful about it that i have stopped talkign to her-calling me an attention seeking liar and sayign almost all autistic people with autism are nonverbal tantrum throwers and even the “pleasant and nice” verbal ones can’t live alone without supervision. Apparently all the autistic people she admits to knowing are nonverbal and dependent on their parents as adults, and she can’t admit it’s not universal.She ripped into a couple of my Aspie friends too, and seriously hurt the feelings of at least one of them.

    so confusing.

    Liked by 2 people

    1. I’m sorry you had that experience Susan. I wish I could say it’s uncommon, but, well… It happens a lot. People do seem to have a lot of fear and anger around autism. And I agree with you about the high fives, too.

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      1. My take on the book:

        Elmo: This is Julia. She’s a pathetic freak, but I like her anyway, cause I’m nice.

        Abby: I’m glad you’re here to be her interpreter or I wouldn’t be able to like Julia.

        Julia: I don’t like noise.

        Elmo: Julia doesn’t like noise.

        Abby: Thanks for explaining Elmo. I didn’t know what she meant.

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      2. My judgment of the book is similar to Susan’s.

        However, I am giving time for the SESAME STREET staff to act on the written promise of their vice-president (Jeanette Betancourt) to think through the comments I sent her — she calls these comments “thoughtful feedback,” and her letter uses “autistic person” (which I call Inclusion-First Language, for reasons such as I’ve explained earlier in this thread). Therefore, I am allowing time to see if they act on her promise.

        We should know what, if any, improvements will have been made by the time the next ASAnstionsl,conference opens (July 2016). Since the most recent conference (July 2015) already had a SESAME STREET booth with a poster telling us to “stay tuned for the ‘See the Amazing’ autism project later this year” , I’m betting that 2016 will see /a/ an actress in a Julia suit talking to people & giving autographs, /b/ a Julia Muppet on the show, AND /c/ a GREAT improvement over the existing materials. If /a/, /b/, and/or /c/ haven’t happened by then, or have happened in derogatory ways (e.g., not having Julia on TV, or not letting her do/say anything on her own beyond the usual,”pitiful freak” scripts for representing autistics in media), then I will definitely resume complaints — I’ll also resume complaints if anything derogatory, or otherwise irrational and wrong-headed, comes out from SESAME before that time.

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  34. Erin, you occasionally misspell a tag for this posting (and the URL for that tag) by typing “neurodiveristy” instead of “neurodiversity” — you may want to do a global search-and-replace” throughout your site.

    Speaking of terms: I often see “neurotypical” used as the opposite of “autistic” — this is a problem (of imprecision) because there are non-autistic people who are still not neurotypical (e.g., a non-autistic may be dyslexic). Because of this, what do You think of calling non-autistics (who may or may not be neurotypical in any way) simply “non-autistics” or (my preferred choice) “people without autism”? (I like that one because it amazingly “wakes up” such people when they themselves are called that: suddenly, they understand why “person with_____” language is NOT respectful, but is in fact “Pointing Finger” Language.)

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    1. Thanks for the head up on typos, I frequently transcribe letters when I type, and since spell check does not recognize “neurodiversity,” misspellings slip through.

      I agree with you on “non-autistics” for most conversations about neurodiversity etc. I consciously used neurotypical through out this blog post because I feel it is that monolithic dominant majority that is represented by SSW’s materials. Their target audience appears to me to be neurotypical, and they appear to use a neurotypical viewpoint to explain autism to that audience. That’s my perception anyway, but I appreciate you drawing those distinctions for anyone still reading the comments!

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      1. It is possible to teach new words to your spell-checker. The exact method differs across systems, so ask around.

        As I’ve said somewhere, “non-autistic” works well — but, when the other person throws a hissy-fit if you classify yourself as anything BUT a “person with autism,” turn the tables — call him/her (usually it’s a “her”) a “person without autism” for the rest of the conversation … or even kick it up a few notches, and call him/her a “person with non-autism/person with neurotypicality”!

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  35. I see that, these past three days, there is almost NO new media release-stuff or other news about Julia or “See the Amazing”!

    The ONLY new bit of autism/Julia news that came up on Google or Bing during the past three days was one Maine newspaper’s recent syndicated word-for-word copy of the press-release that National Public Radio ran about a week ago.

    This MAY mean that SESAME STREET is re-thinking and re-designing the project — in my experience with publicity campaigns, when a just-launched project very suddenly goes from “intense long-lasting media blast” to “suddenly nothing new,” literally overnight, this very often means that the entire project is being quietly redesigned (as a result of public complaint or other documentably bad response) before the people in charge take it any further.

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  36. Spread this far and wide.

    It turns out that SESAME created Julia at the suggestion of staff at The Barber Institute (http://www.barberinstitute.org), a “behavioral health” school for autistic and intellectually disabled kids:
    http://www.erienewsnow.com/story/30458839/barber-institute-sesame-street-create-new-character-with-autism
    Note that at least one of the kids at the school is quoted in the news-etory

    And here’s video of a Barber Institute staffer reading the Julia story to the Barber Institute kids:
    http://www.twcnews.com/nys/buffalo/news/2015/10/24/sesame-street–autism–julia–see-amazing.html

    Comments? (Note that both news-sites include comment-spaces, and the Barber Institute site has a contact-link.)

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    1. Does “ableist” mean “preferring ability to inability”? If so, I don’t regard “ableism” as wrong — in fact, I see it as correct and important and worth caring about. If I’m wrong on this — if I’m wrong, for instance, in preferring ability to inability — please show me how I am wrong.

      Like

  37. When I encounter many of the things that people say and write against “ableism,” a lot of what they’re calling out as “bigotry” appears, to me, undeserving of that. For instance, the first time I encountered the term “ableism” was in a conversation with a student whose mother had asked me to help get started with a foreign language over summer vacation, because this language was required at the school the student was transferring to When the student complained that I had given her less than 100% on an assignment, the mother complained that I was being “bigoted by reason of ableism” because I wasn’t willing to “equalize things” by giving full credit for incorrect work, including incomprehensible work.
    The following link is to another situation (much later, in adult life, among fellow autistics) in which one fellow autistic denounced me for similar reasons: to help me understand any possible “ableist” bigotry issues involved here, I’d like your take on the matter — https://autisticsaware.wordpress.com/2011/11/03/pails-to-the-radio/

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  38. SESAME STREET’s Jeanette Betancourt’s most recent letter to me (a couple of days ago) states that they are looking for a voice actress to voice Julia. In other words, Julia WILL speak for herself — her voice WILL be heard — and this makes it more than likely that she WILL tell her own story, and WILL be on the TV show. Stay tuned …

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    1. The day after this weep-page started, I contacted the staff at SESAME STREET, asked them to read it, and told them a few of the reasons. The one who answered that request is high up on the team that designed the project, and she has since been carefully and sympathetically reading this page, as well as readying my following e-mails directing her to other autistics’ blogs addressing the same and similar issues. I can’t tell you more, except that she says she has learned a lot from this reading & that she advises is to stay tuned to see what happens with Julia …

      Liked by 1 person

  39. I completely agree with every statement you said.
    I like what Sesame Street is doing however they need to read this article and learn that this is what should’ve happened.

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    1. I have referred — emphatically — a SESAME STREET executive to this article, and to the comments it continues to spur. This began a conversation between the exec and me, by e-mail, which has continued for several months, and which continues still. The conversation, at the exc’s request, must remain confidential — but I strongly suggest that anyone who is (rightly!) concerned about SESAME STREET’s false steps should continue to read the SESAME STREET Autism Initiative site in 2017 and in future years. I wouldn’t rule out tuning into the TV program sooner or later, too.

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  40. This was brilliant review! My daughter is autistic and I am learning. You are right about the complaining. There should be a time and place for that. I am a single mom and her dad is not in the picture at all but I will be more careful. She is getting ready to turn 3 so I got excited about this but won’t bother with it now. Thank you for writing this!

    Liked by 1 person

    1. Hi Rachel! I haven’t reviewed the new material yet but since I wrote this they’ve put out some new videos that are better than the first batch (though the old ones are still there). I like the ones where autistic kids talk about their favorite things and favorite foods. I’ll write up a new review soon. 🙂

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  41. Reblogged this on Melissa Fields, Autist and commented:
    Because…Sesame Street can do way better than this with Julia. They ned to let Julia talk. Let Julia tell Julia’s story through Julia’s eyes, and not forcing her or any Autistic people, for that matter, to do normal neurotypical, when we are neurodivergent.

    Sesame Street, there is nothing wrong with us being Autistic!!

    An excellent read, Erin!! This needs to be read and re-read and shared widely!!

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  42. So NOW apparently Julia is becoming a ‘real’ 3D Muppet (airing from April, I think?) … I would love for you to write about how you perceive Sesame Street’s NEW attempt at Julia … See IF they’ve made any improvement (from all the feedback)

    Like

    1. I will do another review of the new material! I think they have taken in some feedback from autistic people but they still have a ways to go, and they are still running the old problematic material on their website. Stay tuned!

      Like

  43. The trouble is, they’ve consulted psychologists, etc like they do for every other “sensitive topic”. What it seems like they HAVEN’T done is consulted anyone in the autistic community. We speak best for ourselves.
    And totally with you with the “person-first language”. It makes it too easy for non-autistics to separate the autism from us. It’s an integral part of who we are, not something that can be therapied away, and trained away. Sure, extra help on learning how to interact isn’t a bad thing – but forcing autistics to do stuff that they really really aren’t comfortable with isn’t cool.

    Brushing teeth? Sure. Sensory overload at its worst. But it’s something that has to be done for hygiene and health – pinning a person down isn’t the answer, finding ways to make it less uncomfortable is the way to go.
    It’s like Sesame Street listened to all the neurotypicals (non-spectrumers) and completely excluded autistic people on what should be included. Or have BOTH included, so we get to see both sides of the coin, so to speak.

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    1. *Re:* * “What it seems like they HAVEN’T done is consulted anyone in the autistic community.”* *I’m an autistic woman with whom the project leader, Jeanette, Bethancourt, has regularly consulted since October 2015 when I first addressed her with my many concerns about the project’s content, direction, and sponsorship. *

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    2. I hear you. They did consult autistic people, mainly via the Autistic Self Advocacy Network, but ASAN was only 1 of 14 consultants on this programming, and the vast majority were neurotypical parents and professionals. I think that bias unfortunately comes through strongly in the content I’ve seen so far.

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      1. Sounds about right. It’s like neurotypicals saying “well, terminology should be person-first”, when the majority of “autistic” people prefer autistic over person-with-autism.

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  44. I’m 20. We were taught in school to say person with autism. I apologize and I will work to switch to autistic person.

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  45. Apparently, she’ll be more often described as “has autism” than as “autistic.” Maybe some more letter-writing can get them to re-consider: as it got them to re-consider so much else.

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  46. I came here after noticing that videos of Sesame Street’s new autistic character had appeared on YouTube’s trending list. I haven’t watched them yet but got interested in the topic as I got my ASC diagnosis a couple of months ago at the age of 38.

    I’ll be interested to see if your points have influenced the way that the TV version of the character is portrayed, and would like to thank you for your efforts to communicate some of the subtleties of interaction that the condition engenders.

    Like

  47. I’m autistic and also a natural redhead. A a child and in adolescence I was frequently called offensive names regarding my red hair. Later in life I found my difference wasn’t confined to hair colour…. another label…

    It seems that NTs have always disliked people of difference.

    Poor Julia has been saddled with another disability.

    Unconscious association?

    Like

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