Julia, the Autistic Muppet, and Inclusion

karmaThe hot news blowing up my Facebook feed this week: Sesame Street is introducing a new character, Julia, who has autism. For a minute I wondered if it was April already as I was bombarded with the “historic announcement” that this autistic Muppet (the description used by several media news outlets) was created to expand awareness for young, typically developing children who are not familiar with what autism looks like, and to start a dialogue that would have an impact on the bullying that so many children with autism currently face.

Wait a minute . . . For the past several years, at least for as long as I have had children, we have been led to believe that the purpose of Autism Speaks was to raise global awareness of autism. Parents, friends and family members have been asked to walk and donate millions of dollars for this purpose. My youngest children received their diagnosis on the first global autism awareness day in 2008 at age 25 months. And Sesame Street debuts a character with autism seven and a half years later because of the “sheer numbers.” For those of us that have watched autism rates explode over the last 20 years, this is devastating. What happened to all of that money spent on awareness that was raised every year by autism families anyways?

It is culturally significant that there is a generation of children that are now preschool age that are growing up with autism all around them to the point that they may become desensitized to it. Or, at the very least, it is being normalized to the point of just being “a difference.” It would have been helpful if Sesame Street had done this a few years earlier, perhaps, in order to help educate the children that are now in grade school where differences are not considered amazing so much as awkward and scary.

Julia the Autistic Muppet

Julia the Autistic Muppet

Notably, no major autism organization is sponsoring Sesame’s Autism Initiative, but they did collaborate on it. Knowing they had the potential for backlash in a divided community, they consulted Autism Speaks and the Autism Self Advocacy Network (ASAN) so they could cover all bases and receive positive support from both ends, or at least that was their intention. Do you see any organizations in the list of advisors that you support that represents your family?

Each April, many families, including ours, dread the bombardment of media images celebrating autism, the cheerful message of quirky child prodigies, feel-good celebrity fundraisers for Autism Speaks for MORE awareness, and updates on duplicative research for the ever-elusive “autism gene.” This week, as “the Twitter sphere exploded” with the announcement of this new character, I started to become very stressed watching countless posts about how wonderful this all was. To many it must have finally felt like inclusion in the world’s most famous neighborhood.

Until you dig deeper.

As parents, we all have experienced the stealth marketing power of Sesame Street and their cute Muppets plastered on every toy, food, clothing and video aisle. We all grew up with these characters of the ‘70s and the more adult Muppet Show of the ‘80s. The appeal is multi-generational as well as multi-level, with some messages seemingly aimed at children, while the parents who watch with them come away with their own message as well, especially in the pop culture and joke references. That’s what made it especially disappointing when Vivek Murthy, the United States Surgeon General, appeared with Elmo recently to discuss vaccines. To say that it felt like a betrayal to many families that trusted Sesame Street to watch them use a beloved character to market medical procedures directly to their children is an understatement. But of course it was equally aimed at their parents as well.

surgeon general

Surgeon General Vivek Murthy and Elmo

 

So now Sesame Street is launching the animated face of autism, Julia. After the Elmo vaccine debacle, of course my first reaction is suspicion and distrust. Characters are merchandising opportunities, and Elmo is pervasive at many autism-related family events. Do we really want to go to a big box store and see a Julia doll, Julia T-shirts sold at autism walks, and Julia integrated into marketing materials for Autism Awareness Month as a shill for Disney, the parent company that now owns the Muppets and Star Wars? What’s next – will Luke Skywalker have a son with severe autism using the Force to communicate when he is non-verbal?

With all of this in mind and a lot of questions, I went to the Sesame Street site to check it out. I made sure that I watched every video, read all of the resources, and looked at the Daily Routine Cards and Storybook so I could give thoughtful feedback.

The first video I watched was the “Amazing Song,” to which I rolled my eyes and thought “good grief, another glorification of how AMAZING autism is.” Then I saw kids like my own using AAC (Augmentative and Alternative Communication) devices and I started to cry, which took me by surprise.  I have never seen a child with a speech device represented in the media. They say that autism is an invisible disability, one that you can’t tell someone has just by looking at them — except  when you can totally tell by body movements, vocalizations, and lack of speech along with the use of a device. For us and many other families, it feels like your family is invisible because it is has autism. Yes, it affects all of us. I never see children like my sons represented in the media, let alone in a positive light.

And then I realized . . . my kids have also never seen this. I sat down and had R look at the Storybook with Julia. He paid attention; he finally is at the stage where he is engaged and enjoying things that he completely missed out on when he was at the age that Sesame Street is aimed at. He saw a page where she covers her ears, something that his twin does multiple times a day.  We watched the video Thomas’s Story with a child at the same development level as he and his brother. He watched intently and smiled when he recognized the iPad and the voice that he uses for Proloquo. The video showed what a day in this boy’s life was like, including quiet time in a therapy swing when he was overwhelmed and communicating with his parents.

Holy crap! This is what inclusion looks like: seeing a video on a mainstream website that has a realistic portrayal of a family like ours and watching it with your child who gets it and enjoys seeing a child he has something in common with. It did not feel whitewashed, quite the opposite. The next videos were families where the dad helped out, the siblings were involved, and a little girl used sign language to communicate. One had a mom explaining how sometimes she struggles along with her child when they are in stressful situations. It was real – they showed kids having sensory issues and a mom overwhelmed by the stresses of getting her child to therapy on public transport. No mention of how “amazing” autism is, just real families. And a range of types of kids with a range of behaviors.

After spending a large chunk of time on this site, I had mixed feelings. The videos I loved – they felt like acknowledgement that our family was not invisible. Like many parents, my next thought was will the intended audience ever see them? Upon closer inspection of the site, I learned that Julia is only in the Storybook. For the big deal they have made in online media, with every major news outlet reporting from NPR to CNN, I assumed that this translated to the debut of the actual Julia Muppet on television. At this time there are no plans to actually do this; so, unfortunately, Julia, like so many real-life kids is not participating in real “inclusion.” She is not actually joining the television neighborhood, only the online digital world since the belief is that kids with autism will respond to this format. This is a shame because, if you watch the videos, the kids with autism really respond to the real-life fuzziness of the Muppets themselves.

Luke Skywalker of Star Wars

Luke Skywalker of Star Wars

I also thought that Julia and the Autism Initiative were created in order to help typical peers understand autism. If their parents don’t know about this initiative and it doesn’t air, how will this happen?  She is also missing from the Daily Routine cards, which break down daily living activities into steps. They only depict the regular characters. Another shame as K really liked these cards — they are a visual representation of goals he has in occupational therapy — and I like the fact that they are printable for use offline. Children with autism can have a great deal of difficulty dealing with daily routines. There is a clear need for something like the Daily Routine Cards. Is it too much to hope that they could depict a character who had the same issues they do?

Julia must be in the videos, right? Nope. Regular Muppets. It is disappointing to feel like Julia is being used to get media attention but not actually invested with a real-life representation. This may be because they are testing the waters to see what the public reaction will be; the people interviewed about the project seemed to be hyper-aware that this has the potential to backfire. Once they work out the kinks, I hope they will take the next step so the public they are trying to reach with their message of awareness and tolerance of amazing differences (not amazing autism!) will not have to seek it out on the Internet, but will instead have it piped right into their living rooms.

For now, I am hopeful that the videos on this site will open a dialogue with people who truly want to learn more, as they are the closest thing I have seen to validation of the struggles and the amazing perseverance of autism families, especially the ones so often hidden from view and the community due to the very real medical issues they deal with. As I write this, I am with my sons who are receiving in-home medical treatments, or I would be at the CDC Rally for Truth and Transparency, standing in solidarity with other families (I will be there at the Saturday event in Grant Park).

It’s a shame that Facebook exploded with the idea of the “inclusion” of Julia the Muppet when that has not been fully realized. I hope they continue to develop this with input from Thinking Parents and the autism organizations they support. If you would like to share your family’s story or partner with Sesame Street on their Autism Initiative, they included a contact email on the site: [email protected]

~ Karma

For more by Karma, click here.

 

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18 Responses to Julia, the Autistic Muppet, and Inclusion

  1. Alastair Meek says:

    Ignoring the now the ever-present fallacy of Autism being caused by Vaccines in the comments. (We aren’t caused by vaccines. Stop trying to use us to further your agenda)….

    The first part of the article is fairly easily solved. Stop supporting Autism Speaks. They are a disgusting organisation that exists to quash us at every possible turn while attempting to extract as much money and attention as possible, so preventing anyone else being able to do anything helpful either.

    So just stop promoting Autism Speaks. It’s dangerous and damages us.

    • ProfessorTMR says:

      Alastair, this site doesn’t promote or support Autism Speaks. However, we don’t believe that they exist to “quash you,” though they do seem to extract as much money and attention as possible.

      But I wonder what you think our “agenda” is here at TMR if you think we’re “using you” to further it? I can tell you it in a few words: healthy kids. That’s it — the end. You can benefit from what we do if you wish — or not. It’s up to you. But we are by no means “using you” for anything. We exist to help our own children and that of many others, and we have done so. We know this because we hear from people frequently telling us how much healthier and happier their children are thanks to what we do. And, yes, many of those children were harmed by vaccines and would not have autism, or it would not be as severe (in most cases, far more severe than yours evidently is) if they had not been.

  2. Taswegian says:

    Thanks for the email link… just told them I was disgusted to see them have the Surgeon General using Elmo to push vaccines and shame parents a few months ago and then parade around an autistic Muppet (who was probably vaccine damaged!). What a slap in the face to vaccine damaged families! :/

    • tom says:

      Are you being serious ? i can’t tell.
      In the event that you are :
      I know autist from families that refused vaccination , of course you may not find that evidence for a total lack of connection between vaccines and autism , but can you tell me why you think vaccines would be such a big cause of autism that it is probable that that is the reason this FICTIONAL character is autistic ?

      Because it seems highly unlikely that that would be something the writers discussed when developing the concept. Even if ,as you seem to think, Vaccines are the main cause for autism , what makes you think the writing staff of sesame street and the surgeon general would have this ridiculous conspiracy going on to make kids autistic?

      • ProfessorTMR says:

        Taswegian didn’t say anything about Sesame Street writers being part of a “ridiculous conspiracy.” Many people don’t believe there is a vaccine/autism connection. It’s quite possible Sesame Street’s writers are among them. That doesn’t mean that it wouldn’t feel like a slap in the face to see them promote vaccines then have a character who behaves the same way that your vaccine-injured child does.

        Vaccines are “such a big cause of autism” because repeated hyperstimulation of the immune system has a direct effect on the neurological system, including the brain. It also stimulates the production of antibodies to whatever is injected. So… people develop allergy and autoimmune conditions after injections of things designed to hyperstimulate the immune system.

        One of the problems people have with “promoting vaccines” like the Surgeon General did on Sesame Street pretends that all vaccines are created equal and the more the merrier, when EACH and EVERY dose of vaccine carries with it risk of significant harm to someone who starts out healthy. If all children were to get all the doses of vaccine on the recommended schedule at the time they are recommended there would be an epidemic of autoimmune conditions, allergies, asthma, ADHD, etc., etc., etc. Oh, wait… There is.

      • Taswegian says:

        1. Read a vaccine package insert lately? Some actually say an adverse reaction to the vaccine is Autism (amongst dozens of other things like SIDS, Guillane Barre Syndrome, Seizures, Encephalitis i.e. brain swelling).
        2. Also 83 families have been compensated by the USA’s Vaccine Compensation Fund (out of the $3billion) for autism which was found to be directly linked to their vaccines.
        3. The US has the greatest number of vaccines on their Schedule (up to 74 by the time a child turns 18) which has now become mandated in most States, with the majority of vaccines being administered in the first couple years of life and the highest rate of autism in the world 1:50, most often detected in children 2-3 years old.
        4. Whistleblower Dr William Thompson highlighted that the CDC attempted to cover up and falsify studies that demonstrated significant links between the MMR vaccine and autism in African American children.
        Need I go on…
        So now that big pharma has it’s tentacles into children’s television like they do all over the medical profession, media and governments (being one of the top 3 wealthiest industries in the world), it’s not surprising Sesame Street, (for the 1st time in their 40? year history) have to create an ‘autistic’ muppet to represent all thos ‘damaged’ individuals, we just didn’t have when I went to school 30+ years ago!

  3. KarmaTMR says:

    What, Bert doesnt have a diagnosis? I always felt like he might.

  4. KarmaTMR says:

    Thanks for reading and leaving feedback Sherry. I worked hard to see both sides of the story. The day after my piece ran I saw another one from a blogger that was extremely critical of the entire website. I think it has a good start but needs work as it feels unfinished. It doesn’t seem right to half launch such a major initiative years in the making, with input from several organizations, without actually including Julia as a real muppet on the television version of Sesame Street. My kids have been partially included at school for years so it stood out to me as did the representation of kids at their level in the videos, which other bloggers have been extremely negative about. I was not, I appreciated the videos because the intended viewers may encounter my kids in a stressful situation in public and not understand what that looks like. So yes, baby steps of hope. I was trying to communicate that.

  5. Sherry Watkin says:

    Are you ever happy with anything? Autism sucks, makes life harder for everyone. We still love our kids and want to be understood and included. We want autism to not be so hard. I almost quit reading because of the negativity from your commentary. Still don’t know what you want. What does the proper effort and response look like? Maybe the autism dad can feel better having been involved in trying to help others through his work with the production of this project. Hope he is feeling better because his life is hard. Baby steps filled with hope, possibilities and less judgement and bickering would make me as a reader feel better.

  6. nhokkanen says:

    And where is the hidden horde of older muppets on the spectrum?

    • ProfessorTMR says:

      I thought the same, Nancy. If autism has always been around in the same kinds of numbers, why has there never been a character before with any form of autism?

      • tom says:

        Technically all muppets can be diagnosed already because they all display very exaggerated behavior. They are written this way because this allows for both comedy and lessons about dealing conflicting personalities and interests.

        All monsters are self centered and display obsessive behavior and antisocial behavior ,

        Oscar is obsessed with collecting trash and knowingly antisocial,
        Grover is self centered and extremely obsessive about whatever the sketch is about , be it selling kermit the frog useless items , or being a superhero, but more interested in praise than anything else and inherently un-emphatic even when inflicting pain.

        Elmo is neurotic and theatrical like grover but slightly more empathic when it comes to pain.

        Cookie monster you can analyse yourself.

        In the end these characters suffer the consequences of their behavior in a comedic way , or learn a lesson by resolving a conflict.
        The difference with the new character is that where-as the behavior of characters like cookie monster is limited to their flaws and possibly redeeming themselves in a short morality play the new character genuinely can’t help it if she behaves a certain way , and her redeeming qualities are supposed to be her talents instead.

        She is going to be there to teach kids how deal with someone who you can’t expect a certain emotional intelligence from , or who really gets upset when you make fun of their paper clip collection and not just frowny faced like Bert.

  7. Jersey Girl says:

    I heard that Julia was created by a long time Sesame Street employee who has a son with severe autism. He also has a popular blog called “Autism Daddy”.

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