You can do better

Dear Sesame Street,

I grew up watching your show. I was born in 1981 and I have many fond memories of watching Sesame Street with various family members. It made me happy when I saw kids who weren’t abled or were diverse in some way. You made it ok to be different, to think differently, to behave different from the norm and still be ok. For my early childhood anyways, between you and Mr. Rogers, I felt like it was okay to be me.

When I had children, I couldn’t wait to introduce my kids to Sesame Street. They loved it just as much as I did. I’m fairly certain my daughter was watching it long before her second birthday.

So when I saw that you were beginning a new autism initiative, I was tentatively excited. After all, you helped this autistic person accept themselves. Both of my children are also autistic and I hoped that this would be more explicit acceptance of autistic people.

But then I found out that you were partnering with Autism Speaks, which sounds great, but is not. Autism Speaks contributes to the stigma against autistic people in a big way. So I, along with other supporters of Boycott Autism Speaks, tweeted you to let you know how we felt. We left messages on your Facebook page. Yet we received no response. (But I did see a statement from ASAN regarding their involvement, so this is a small somewhat good step) .

This week, you introduced Julia, an autistic Muppet. I think she’s great, and as an autistic person who is not a young boy, having a character who is autistic be a girl is a huge step. I think many of the stories are good, too. It’s fantastic to see an autistic person use AAC and not be shamed for it. It’s great to see a child stim and it be okay. (I was not so pleased with the casual discussion of holding down an autistic kid to brush her hair. That’s all kinds of wrong).

But then I go to the resources on your page and there’s a resource page for parents and teachers and siblings and? Where are the resources for autistic people? Then I realized that this was never for us. This was never so kids like mine could have a character to relate to. This was so that parents could have a character to point to so they can explain autism. This is so that other kids know what to look for to identify  autistic kids. This isn’t really for me or for my kids. This isn’t for people like us. This is for others to explain us.

All of this is so clear when I realize that Julia isn’t a real Muppet. She’s a cartoon. She’s not like Elmo and Abby Cadabby and Rosita and Grover and Telly. She’s just a cartoon. As autistic people, we aren’t often considered real people. We are often calling ourselves unpeople in autistic spaces because that’s how people treat us. There are studies done about whether autistic people are capable of pain, of emotion. And this is only reinforcing that.

With collaboration with Autism Speaks and Autism Daddy, I am not surprised. But I’m hurt.

I don’t expect perfection. But with the person first language (notice my use of identity first language? It’s intentional because most of the autistic community prefers that), the fact that Julia isn’t a real Muppet and the lack of resources for autistic people, I’m a bit miffed. Because you have the ability to do much better. But you chose to center this on non autistic voices, while never responding to the autistic people begging you to do what’s right.

I see that this is a step toward acceptance and understanding. It might help preschool kids accept kids like mine, and is a step toward understanding. But we still have a long way to go.

Published by

thecaffeinatedautistic

I am a 35 year old parent of two multiply neurodivergent preteens. I am Autistic and queer.

150 thoughts on “You can do better”

  1. Pingback: You can do better | Louellena's

  2. How is it that everyone is missing the fact that this is the beginning, and Julia hasn’t yet been on an episode?

    How is it that so many people are bashing Sesame Street Workshop for something they haven’t done wrong?

    How is it that everyone is so uptight about A$ they miss the fact that ASAN is involved directly in this project?

    How is it people are missing the fact that NT parents are going to need supporting materials when Julia DOES show up on screen? She will unless you keep screaming about what they did wrong before they have even done anything yet.

    It takes months to prepare a show, writing, setdec, characters, lighting, makeup, blocking, scripts, staffing, character calls for human characters, and so much more, let alone creating Julia and getting her handlers up to speed, figuring out how to represent an authentic autistic character and yet so many autistic people are up in arms because they are not seeing the whole picture yet?

    I grew up watch Sesame Street too. It first aired in 1969. I was 5. Julia is going to be awesome if you don’t kill the project with your ranting first. I am an autistic woman who uses an AAC in public without shame. Now. For for much of my life I had to sign or worse.

    The materials on the website are NT based for a reason, so that NT parents don’t freak when Julia shows up. She hasn’t walked on set yet.

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    1. Way to generalize there. Maybe, just maybe, interact with the content of what I’ve actually written rather than lump me in with a group that I may or may not belong to?

      I mentioned that they worked with ASAN and Autism Speaks. Did you miss that? What happened as a result of that is this weird combination of ableism and acceptance that doesn’t work all that well.

      Where is the evidence that there is still more to come? Where is the evidence or a statement that she’s going to be on an episode when she’s being released as a cartoon only? I haven’t ever seen this happen with other characters to my knowledge. When Abby Cadabby was introduced to the show, it wasn’t in cartoon form. It was as an actual Muppet. Where is the proof that there is going to be a real Muppet version of Julia?

      Where is there any proof that Sesame Street is going to offer any material from an autistic person’s perspective? I’ve seen several news outlets call this introduction from “an autistic character’s point of view” but it isn’t. This is from Elmo and Abby Cadabby’s point of view but it isn’t from Julia’s. It’s from a very neurotypical point of view.

      They’ve had three years to get this right. And I don’t see any evidence that they really centered this on autistic people. It feels as a whole as if ASAN was included to avoid backlash from the autistic community rather than because they actually wanted to hear from autistic people.

      Also the materials provided are minimal and they aren’t anything revolutionary, not really. I don’t really see how they’re going to help neurotypical parents prepare their neurotypical kids to interact with autistic kids, or how they’re going to help neurotypical parents help their autistic kids deal with the world around them. You know what has helped me the most as a parent? The experiences and advice of other autistic adults. Finding out that Oh this is a thing my kid does but is not a thing I do, but oh other autistic adults can relate to this and here’s how to help was actually revolutionary. Not more information on ABA therapy and quiet hands and forcing them into more uncomfortable sensory experiences.

      But by all means, continue want ranting about how I’m “screaming” and “killing the project”. That’s useful.

      I want Sesame Street to do this character justice. Not make her a one dimensional cartoon character that is only allowed in books and apps. If you have proof that she’s going to be elsewhere, by all means share that information. I’m not seeing that anywhere in any press release. The closest was NPR, which said that they were waiting to hear back from the autism community before introducing her to the show. If she’s such a great character and there are no issues with her introduction, why are they waiting? Oh, right, to hear from us which is why giving my opinion is important. Which is why others have also written and their opinions are important too. Wow, amazing, if we say something, like they asked, her character design might actually improve! Imagine that! She might be a real character on the show instead of just a cartoon.

      But absolutely, I’m just whining. /sarcasm

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      5. Again, I’ve not seen a single indication that they have ever introduced another character this way, in cartoon form. Rosita? Muppet on her first day on the show. Abby Cadabby? Also a Muppet. And they put out this statement regarding her being a cartoon :

        “Westin also said that they decided to create Julia digitally because “families with autistic children tend to gravitate toward digital content.”

        http://m.huffpost.com/us/entry/5627e718e4b0bce34703c19d

        That article also says that there is no indication if or when she will appear in the show. So.

        Liked by 1 person

      8. To “euphoriciraqisinglemom” — Take our perspectives; see our sides of the disagreement. (After all, people like you are widely claimed to have empathy: use this).

        From our perspectives, we can see that any adult without autism lacks a certain credibility when attempting to interact with autistic adults in a venue, and on a topic, which the autistics in the interaction recognize as personally significant. To a degree, the intrinsic shortcoming in credibility can sometimes be compensated for, if the person without autism is willing to develop and use the proper social skills and/or empathy needed to hold up his/her end of the interaction. So far, in the current conversation, this has not been happening. Please try harder.

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      1. Me too. You’re right, it’s a good step in the right direction. But the fact that it is so focused on the people around a person with autism and not the experience of that person isn’t… it’s not really changing anything. I sure hope they see your letter and rethink some of what they’re doing to be more inclusive!

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      2. I hope they do! I’m going to send them an email with the links to the posts I’ve written about this along with an edited and more concise statement about why Julia is important but why she as a character isn’t quite there yet.

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  8. A somewhat upsetting post. I’ve never watched Sesame Street, but it seems as if this partnership has taken a step towards misinterpretation. I agree with a lot that’s been said in this article. We shouldn’t label people, and it is much worse for a programme to encourage doing that. Thanks for sharing.

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    1. It isn’t about labeling or not labeling a person. Autistic is a label that describes me (one of several labels) and labels are useful for finding community and Acceptance and understanding. But focusing on the way others talk about us is the problem.

      Look, if Julia had been able to tell her own story or heck if any of the autistic kids had done the same, I’d have fewer criticisms. It isn’t about not wanting a label or putting her into a box (though that’s a reasonable concern, too!). It’s about allowing her to be proudly autistic and speaking for herself instead of others speaking over her.

      Rosita is proud of her heritage. I want Julia to be proud of herself for being autistic in a similar way.

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      1. I’m an autistic who doesn’t understand the claim that a person should be “proud” of his/her genes, lineage, ancestry, inherited condition, the culture s/he was born into, or anything else that s/he did not create and cannot take credit, Will the author of the statement comparing Julia with Rosita please explain what it means and what would make it true? I obviously was absent on whichever schoolday everyone else had this explained and demonstrated to them.

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      2. Why not be proud of what makes you who you are? I mean you don’t have to, obviously, but I don’t understand why a person would choose to not embrace what makes them who they are. I spent too much of my life hearing how awful it was to be like me and I decided one day that no, I should embrace who I am instead. What was wrong with thinking differently, and using writing as communication and being better at that than speaking? What was wrong with being overwhelmed with emotion when hearing and viewing certain things instead of being practically oblivious to their emotional impact? Nothing. Nothing is wrong with that. Nothing is wrong with being neurodivergent, and I accept that as much as I accept my sexuality and gender, body type, socioeconomic status, etc.

        I bring up Rosita as a character because they have done episodes on how important being Mexican is to her. They’ve done some exploration on how important being Deaf is to Samara and Linda. They’ve had characters with Down Syndrome who were very proud of who they are. Why not Autistic pride?

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      3. I completely get what you mean. I don’t have autism ‘officially’ but I have a lot of the characteristics. I also have ADD and I’m currently working on a blog post explaining how it effects me at uni. In it I’m not just looking at the fact that it effects my concentration etc, I’m also looking at the fact that I’ve had it since birth, and so therefore it is part of my personality. It’s part of who I am, and I am not proud per se, but I don’t care that I have ADD. Yes it can be frustrating for me at times, but really it just seems to annoy others a lot more than it annoys me.
        I also completely understand what you mean about a step in the right direction, but not enough of a step. I think honestly that there is too much emphasis on teaching other people to ‘deal’ with autistic/ADD children, and not enough of an active ‘discussion’ with the children themselves. Its almost like ‘these people exist and they’re different, but still the same,’ but there’s no mention of helping the child themselves accept who they are themselves. When you see yourself as somebody as a bit ‘different’ that can be hard, so the children themselves need as much help (if not more) than the other children.

        This is just what I’m thinking… correct me if I’m wrong – it was actually really hard to put what I meant into words xD

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      4. Also I didn’t have it explained to me. It was just something I gradually accepted. You can feel differently, and that’s fine. I think a variety of different ways of being autistic is something that we should aim to show as part of Sesame Street and their related media.

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      5. Your explanation leaves me rejecting your position. I can’t be “proud” of something I did not choose, did not earn, did not create. “Pride” in that is silly, like being proud of the inherited color of one’s skin.

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      6. And that’s fine. You don’t have to agree. I need time to process your questions and formulate my own answer as to why that may be the case. It was a long long journey, that probably started around age 11 and became a more complete thing about 5 years ago, when I turned 30. Like I said, a gradual thing.

        You can feel it’s silly. But I don’t feel it is and I definitely don’t tell other people that they shouldn’t feel the way they do about themselves, especially when parts of themselves (like being disabled or gay or black) are seen as awful things by a large portion of society.

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      7. When you are part of a marginalized group you are constantly told to be ashamed of who/what you are. Being proud is an act of resistance.

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    1. Why, Caffeinated Autistic, did you “gradually accept” that premise? Who or what gradually convinced you it was true — and how? (Or was it something you never consciously decided about, but just absorbed without thinking … then noticed, later on, you had “gradually accepted” it as a result?)

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      1. Also I didn’t have it explained to me. It was just something I gradually accepted. You can feel differently, and that’s fine. I think a variety of different ways of being autistic is something that we should aim to show as part of Sesame Street and their related media.

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      2. Sorry that previous reply was supposed to go with the other reply.

        Hmm, that’s a good question. I think maybe it started with a couple of good teachers who emphasized differences being important on the road to acceptance. One of them had a son with down’s syndrome. One of them was just a very good teacher who celebrated diversity in general. And I think that plus finding a community of people who grew up in similar ways to myself was essential.

        This isn’t a real answer. I’m going to think more about it and maybe I’ll write some more on it. Because it’s a combination of things that doesn’t have a concise answer.

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    2. Mitchell writes: “When you are part of a marginalized group you are constantly told to be ashamed of who/what you are. Being proud is an act of resistance.”

      That isn’t good enough. “Being proud” of something you inherited (or were born into, or otherwise didn’t achieve) has another name: chauvinism. Autism chauvinism is no better than any other kind.

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      1. Being proud of a part of yourself that is inherent to who you are is not a negative thing that you’re making it out to be. I don’t even understand how you come up with the utter bullshit that keeps spewing out of your comments to be quite honest.

        When you are a part of a marginalized group and society at large tells you who you are at your very core is something to be ashamed of and that society should get rid of your way of being, yes, being proud of that part of you is an act of resistance and I don’t see how you can possibly call that chauvinism.

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  10. I sometimes think the best way of accepting people with some problems is just not to emphasize too much their…diversity.
    A great example Is for me the ceebeebee, the daily channel of bbc dedicated to kid entertainment. The speakers or some of the reportages include handicapped people, but with such soft, gentle and natural way that you cannot even think of “accepting” them. Why thinking of this: they are like everyone of us, just persons, and therefore automatically to be accepted as such!

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  13. 💙💙💙💙 Thank you. I see life from a different angle also…. not just because I wear glasses or the possibility of being influenced by big bird but seriously – I am okay with it. I just write about the country I grew up in and I call it “Blighty” vs “Land of the midnight sun”….. I mean, it’s creative – it doesn’t harm anyone. Why do we all have to fit into a norm bubble?

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    1. I have. Feel free to search the #EducateSesame hashtag on Twitter, which emerged over a YEAR ago. My comments are there, along with others. This is about education and not teaming up with organizations that contribute to the abuse of people like me. Or teaming up with parents who don’t care about their kids’ privacy or bodily autonomy (like Autism Daddy).

      But please tell me what I’m failing at doing when it’s Sesame Workshop who asked for the autistic community’s thoughts on the initiative. I’ll wait.

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      5. You care, because it directly affects you. If it was something besides autism that was poorly represented you wouldn’t care. Sure younger kids may be mean, but they don’t understand what they’re doing. Eventually, they learn. Special needs kids aren’t the worst bullied, because most people aren’t that heartless. The people who really need to be educated are the educators, because unfortunately they’re not that great at dealing with them. People don’t need to be educated on not to bully autistic people. They need to be educated on the different types of autism and its spectrum. In order to be done justice, there should be at least two autistic characters to show different degrees of autism.

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      6. Why do you think I wouldn’t care if it was something other than autism? I have fought for other causes that have nothing to do with me, that don’t affect me much at all, because I’m not in that particular marginalized group. This blog is about autism, in case you missed the memo (clearly you did).

        Special needs is a gross term. Disabled is a much better one. If you’re talking about the education system, the term is exceptional student education.

        And there isn’t such a thing as “degrees of Autism”. Autism doesn’t work like that. It’s a spectrum, not a scale. And yes this is the whole point. The character of Julia is a good start. It’s not all there is. There should be a variety of different characters, just like they’ve always done. But maybe from an autistic kid’s perspective and not talking about her like she isn’t there, hmm?

        Also your comment about kids not knowing what they’re doing shows a huge lack of understanding of childhood development.

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      8. Totally agree … My son has grown up with a cognitive deficiency that definitely affects his self awareness and self esteem. And yes, kids do know what they are doing at a very young age… I’ve seen it in the classroom and beyond.

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    1. Because they have done it for so many other forms of diversity. Why would I expect anything less from a show that taught me and many others to celebrate diversity? Because they’ve done a great job with many many sensitive topics. If you think this is about publicity, I’m pretty sure you don’t know much of anything about the company as a whole. Like seriously, all you have to do is look at any of the episodes to see the wide variety of characters that exist, both humans and Muppets to see that they can do this well. They just are prioritizing parent voices over autistic people at the moment.

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      6. Interestingly, the Deaf and Autistic communities are very very similar in many ways. And there’s much more information out there in 2015 about autism compared to the 80s and 90s when everyone thought to be autistic you had to be a copy of Rain Man (who was not, in fact, autistic). The Deaf community had been more well recognized back in the 80s and 90s. They have a longer history of pushing for acceptance because they didn’t tend to have doctors shipping them off to institutions.

        Autism is different for every person but I wouldn’t call it complicated.

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      8. Nah. Only if you’re coming at it from a cure or fixing a problem perspective. Then maybe it’s super complicated and confusing to you. Which is probably why neurotypical people need autistic people to explain what it’s like to them.

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      11. Great comeback. You’ll notice I’m no longer taking you seriously, because now you’re just being ignorant. Taking things out of context isn’t the way to win an argument.

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      12. There is nothing about this reply that is taking things out of context. You clearly believe that autism is something super complicated and difficult to grasp and understand and I’m telling you no, it’s not. Unless you think you need to cure autism. In which case I feel sorry for you.

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      15. Autism is generally misrepresented. Making a decent representation difficult. The spread of misinformation about autism turns it into complicated, because misinformation is so common. Oh don’t mean autism is actually a complicated disease.

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      19. I know autistic people struggle with subtext. Hence me saying, I can’t help it if you can’t read subtext. Although, it’s more like you misinterpreted what I wrote. I just said subtext to be polite.

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      20. Nah, you just weren’t clear and direct. Why is it when an autistic person doesn’t understand subtext, it’s their fault and never the other person who isn’t being clear?

        That’s a rhetorical question, by the way. See, I tend to explain things instead of assuming the other person will get the subtext or the right message from what I’m saying or asking.

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      21. Reckon it’s cuz I often overestimate the intelligence of others. Why don’t you write a letter to sesame street counterpoints to the misinformation they’ve been given, instead of wasting time on me?

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      22. You assume I haven’t done this. Is your life 100% about educating people about things or do you do real life things too? Because I don’t know about you, but I’d be pretty irritated all the time if all I did was educate people.

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      24. Oh my bad. I forgot that I wasn’t actually allowed to engage in conversation with people if it wasn’t always about educating them.

        And does this mean that you don’t actually care about autistic people or is that specific to me?

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      29. Thats not a pass to allow it to occur… Obviously you care nothing about kids and what influences kids TV shows may have on their self view. Sesame Street has the largest children’s
        audience in the world. They have a responsibility as a publicly funded institution to do the amount of research necessary to impart accurate and carefully considerate information and portrayals of ALL people. Not only autistic, learning disabled, gay, transgender, Black, Chinese, Indian, etc..

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      34. Great comeback. You’ll notice I’m no longer taking you seriously, because now you’re just being ignorant. Taking things out of context isn’t the way to win an argument.

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      37. Oh I tried. But I don’t need to waste my energy on educating someone who thinks I’m wasting my time. Instead, I’d rather play whack a troll with you. That’s way more fun, since you so aren’t listening anyways.

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  21. My uncle is autistic. He’s non-verbal. My little cousin is also autistic and in the process of further evaluation. My 4 year old step daughter and my 2 year old are inquisitive and have asked, “whats wrong?” I said “nothing is wrong, just different.” I learned about the new character from your post. We have sesame street go app and I am relieved there is a character that will better explain “differences.” I want them to be knowledgeable and loving children. I hope the character develops but I am sincerely glad she is here at all in any form.

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  22. Thank you for this post. It is meaningful to have access to your opinions, as they enlighten me to pay more attention to a significant community. There is a radio show on the NPR app called “Invisibilia.” There is a talk show you might find interesting about Autism (wish I could remember the title…). I would love to hear your perspective on the content of this show. I work in Clinical Mental Health Counseling so your perspective is important to me. You have pointed out discrimination that I would have overlooked. I appreciate that. Please keep sharing and do know that there are many of us who value the Autistic individual’s unique worldview, as a culture, as a beautiful and intelligent way of being, feeling, and seeing. Take care.

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  26. So interesting. I read about the new autistic cast member just as I began reading Michael Davis’s STREET GANG, a history of Sesame Street. Impressed with the real altruism that went into the creation of the show, I was sure the new character would be positive. A cartoon? As the mother of an autistic son, I am shocked, and inspired to find out more. Thanks for a very thoughtful post!

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  28. As a mother of twins, one of whom is autistic, I was actually delighted that Sesame Street introduced this character. I don’t care what their intention is. Who cares?!?!? As long as they “accepted” that autism does exist, that kids do stim, that many kids are non verbal, it’s great. As to the “why” they did it, is not a concern. And that’s just my own personal opinion. I’m not a fan of autism speaks either but introducing such a character will definitely help raise atleast some awareness to many who are ignorant.

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    1. You realize that autistic representation doesn’t matter as much to non autistic people than autistic people, yeah? So your opinion even as a parent is less relevant than what autistic people think.

      Being spoken over isn’t acceptance. Being pushed aside from their own stories isn’t acceptance. Sorry.

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      1. That’s not very fair. I think as a mother of an autistic child, my voice matters as much as an autistic person. I want only the best for my child. Like I’m sure you do too. Anyways people agree to disagree….

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      2. No, sorry. It doesn’t. It doesn’t affect you in the same way that it affects autistic people. You wanna talk fair? Read the comments on any article about parents who murder their autistic kids. Then we’ll talk fair.

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    2. I mean, there is actually not consensus in the autistic community about the quality of this character’s representation of autistic people. But no, the opinions of parents of autistic people do not count as much as the opinions of autistic people when the issue is representation of autistic people. Any more than if you were the heterosexual mother of a gay person, your opinion about gay representation would count as much as that of a gay person. No. The opinions of people being represented count more than the opinions of people not being represented when it comes to issues of representation.

      My opinion about the portrayal of people like me counts more than my parents’ opinions of portrayal of people like me.

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      1. Of course! There’s autistic people who love Julia and that’s fantastic and I’m not telling them their opinion is wrong. But parents of autistic kids who aren’t autistic themselves do not deserve the same voice as autistic people ourselves.

        Which I know you’re agreeing with here; I’m not being contrary.

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      2. I have also seen a lot of the time, that non-autistic parents often have seized on the fact that there is dissent in the autistic community about any given issue to decide that they can just pick whichever side they want and say “this is right, I’m listening to autistic people.” For instance, that they don’t have to give serious consideration to neurodiversity advocates because there *are* autistic people who want a cure. That they can pick any position that’s more convenient to them because somewhere there’s an autistic person who agrees with them.

        And…no. I mean obviously, somebody *can* do that, but it doesn’t actually make it the case that a non-autistic person’s opinion counts as much as autistic people’s opinion when we’re talking about autistic people. Like there is dissent on certain issues that I absolutely have opinions about, but if I’m not a member of the group *most directly actually affected* by a given issue….at the end of the day it’s just not my fight to have. I’m not the person whose opinion actually counts if I’m not the person being misrepresented.

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      4. I have to agree here, your opinion as an autistic parent is worse than useless unless you are exceptional and really understand our lives. You are biased by your own ignorance and wrong ideas. You are NOT autistic, you don’t walk in our shoes, live our lives, see/hear/feel/sense/experience life with an autistic brain. And no, I don’t not have to agree to diagram when you are wrong.

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      5. @thecaffeinatedautistic: What if the autistic child in question can’t communicate in a way that would work when shown on TV? Not everybody can express themselves well enough to be on TV.

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      6. Uhhh I’m pretty sure most autistic kids can communicate in a way that can be shown on TV. There’s rpm, the use of aac devices as well as verbal speech. Verbal expression isn’t the only way an autistic person can communicate. If I’m not mistaken, Sesame Street has had several non speaking disabled people on their show – from those who were deaf to those who had motor and movement disabilities and communicated in alternative ways.

        And yes there are autistic people who haven’t found a way to communicate with nt people. That doesn’t make them incapable of communicating with anyone. Maybe they aren’t right for TV, but that’s true of a good many nt folks too, so I’m failing to see the issue here.

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    3. The opinion of an Allistic person should never carry the same weight as that of an Autistic person when it comes to Autistic issues. Similarly the opinion of a cishet person shouldn’t hold the same weight as the opinion of an LGBT+ person on their issues, the opinions of men shouldn’t hold hold the same weight as the opinions of women on issues of sexism, and the opinions of white people shouldn’t hold the same weight as the opinions of people of colour on issues of racism. How is it not fair that the opinions of people most affected by something be considered the most important?

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      1. But WE ARE affected by it too! I’m the parent. And I didn’t say that the one’s affected are not most important. Plus I don’t think you can compare an LGBT or racism to autism. That’s a different ball game. Like I said, that’s my own opinion and I respect yours…

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      2. I’m a queer autistic person and I think no, neurotypical lgbt people shouldn’t use the comparison, but considering that Ivar Lovaas was the both the father of ABA and instrumental in the feminine boys study, which is the basis of conversion therapy for gay folks. So yeah there’s definitely similarities even though they aren’t the same.

        The point was not that they are the same (even though they share similarities) but that people outside those groups (yes even parents who may want what is best for their kids) don’t get to speak about issues affecting those who are part of those groups. I am part of both. And I am telling you that your job as a parent is to listen to autistic people and amplify our voices. You can have an opinion. I’m not denying you that. But this is an autistic space you’re in and I’m not going to have you claim that your voice matters just as much as mine or my fellow autistic friends.

        I am a parent of two autistic children. I advocate for them when I need to, but my first job is listening to their voices, letting them speak for themselves and tell me what they need. That is something I’ve taught them since they were very young – consent and the ability to advocate for themselves.

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    4. Neville Ross–what are your criteria for someone being able to express themselves well enough to be on TV or not? I’m honestly curious.

      I would also wonder if you’ve seen documentaries like “Autism is a World,” “Wretches and Jabberers,” and “Loving Lampposts,” or the YouTube work “In My Language,” all of which feature minimally verbal or non-speaking people communicating quite vividly in a variety of ways.

      (And like, you could never put *me* on television, even though I’m quite communicative, because my exposure anxiety is that horrible, but that doesn’t mean you could never put an autistic person more or less like me on television.)

      “Familiar or comfortable to most mainstream television viewers” is not the same thing as “able to be represented on television.”

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  30. What a great blog. Very upsetting though. I have been working one on one with an autistic young girl, and doing this for more than a year now i have become much more involved with autism awareness. Recently, I actually wrote a speech on “Erasing the R word”. What I’m trying to get at is that I completely agree with you in that attempts at raising awareness are still struggling to knock that made up barrier between autistic and non autistic people. More successful attempts are physically mixing autistic kids in a typical activity with also non-autistic kids. But hank you for sharing!! Very well-written.

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  32. I totally understand where you are coming from. I think this is something that is often done unintentionally.

    Like when a local school board chose a new girl’s uniform – but no one on the uniform committee had daughters. So the uniforms ended up hot, scratchy, and a weird shape – because, while their heart was in the right place, there wasn’t anyone who really KNEW what it was like to spend five days a week in a school blouse.

    That often happens with systems and resources for disability and illness. Unless you suffer from something yourself, you’re always going to be projecting, to be trying to think of what someone will need, or how to portray something, when you have no experience with that ‘thing’.

    Good on you for highlighting the issues here. I’m sure Sesame Street didn’t intend to make this ‘about’ autistic people, but not ‘for’ autistic people. But since that’s where it stands, and there are autistic voices letting them know – I hope they have the grace to change it.

    xx S.
    (P.S. I don’t personally suffer from autism. But I do suffer from several chronic illnesses, and I’m used to people designing systems for sick and disabled people, without any idea of what they actually need. Disabled toilets for example: who designed those things?? If you’re in a wheelchair, the doors are too heavy for you to open!)

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  34. By the way …
    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-story: good move! Too often, kids in disability coverage are silenced.

    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

    SURE, I’m happy that the kids like Julia, BUT …

    I’m still wondering about the appropriateness and/or “hidden message” of having this group of the population (autistic and otherwise neurologically disabled kids) focus on a resource-package that is very definitely, if subconsciously, designed to be firmly from the perspective of typical kids instead (as abundantly described on your blog and elsewhere).

    What is the Barber Institute inadvertently (?) telling autistic kids, for instance, when a story “about” a person like themselves depicts her primarily as a recipient of others’ niceness?

    (We would not give blind kids a book about how to be nice to blind people, in which the blind character isn’t understood until other, sighted people rescue her by telling other people what she wants and why she is having trouble. Such books were common in the nineteenth century, and into the early twentieth … but that is not the way we want to raise children today … or is it? If not, why is autism being portrayed to autistic [and other] children in this manner?)

    And of course I wonder what’ll be the impact on the little kid (in the news-story) whose favorite SESAME character is now Julia, once it becomes evident to even a pre-schooler that this character is never actually even on the show.

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  38. I can understand your passion for this issue. It is not something I would have thought about when watching Sesame Street with my kids. As awareness of Autism continues to grow so does the need for proper education. I have a degree in Special Education but am not a practicing teacher at the moment partly because I do not agree with the way public education is failing. No Child Left Behind was a joke! It has only caused an increase in the un-education of our children. Alas, that is for another day!

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