Julia from Sesame Street is Nothing Like My Son with Autism (and that’s okay)

by Jo on April 12, 2017

There’s been a lot of chatter on social media about Julia, the new character on Sesame Street who made her television debut this week, much to the dismay of some families who aren’t feeling like celebrating her appearance on the popular children’s show.

Now, Muppets aren’t typically a source of controversy, but Julia happens to have autism, a diagnosis that often leaves its community fractured over disagreements about nearly everything: causes; interventions; to cure or not to cure; person first vs. diagnosis first language; to embrace the puzzle piece or not; the list goes on and on, and Julia is no exception. At the center of the heated discussions is Julia’s portrayal of the neurodevelopmental disorder, which some parents say misses the mark by overlooking the many difficult and often serious behaviors and co-morbid conditions affecting their children on the spectrum. Behaviors like self-injury, aggression, and wandering, and co-morbid conditions such as epilepsy and gastrointestinal problems; topics which are rarely, if ever, explored through television, film, and other media portrayals of autism.

These families, who are living daily with the most severe form autism spectrum disorder, are, once again, feeling left out and ignored, their reality of autism pushed aside and buried in exchange for a version they cannot relate to. I can’t say I blame them. Severe autism is hard. It’s isolating. It’s messy and lonely. It’s rude stares from strangers and emergency landings in airplanes. It’s changing diapers on public bathroom floors and GPS devices strapped to shoe laces. It’s dead-end doctor visits and sleepless nights.

I should know.

It’s the kind of autism my son has. Our matching padded helmets hang in the front hallway, easy to reach when he cannot be consoled and the only way he can communicate his pain and frustration is through head-banging and hair pulling.

Naturally, this means I must agree with those who say Sesame Street should be showing more of OUR kind of autism, right?

Wrong.

Though I’m still about 6 weeks away from getting my grubby little hands on my MS in Child Development, this degree is costing me a fortune, so I’m going to start putting it to good use now, if you don’t mind, since this topic is definitely in my wheelhouse.

Sesame Street’s target audience is not you or me. It’s not your neighbor or my great aunt Freida. It’s not your teen son’s best friend or that dick that keeps parking his car in the handicap spot with no placard in sight cause “it’ll just take a second.” The target audience for Sesame Street is 3 to 5 year-olds.

3 to 5 year-olds.

The same demographic that loves glitter and will likely eat roly poly bugs when left unattended.

Knowing this, it’s necessary to ask ourselves how a difficult subject matter such as autism can and should be delivered to this target audience using developmentally-appropriate content.

Let’s break it down like this. When Sesame Street teaches this same population of viewers about another serious subject such as stranger danger, do they do a segment on human trafficking or do they develop awareness about this topic in a way that is mindful and sensitive to the age group? And, before you hit send on that hate mail, I’m not comparing autism to human trafficking. I’m simply making a point about the importance of knowing your audience, and in the case of autism, Sesame Street – at least so far – is on point. In just their first episode featuring Julia they’ve managed to explore several themes relevant to the disorder: sensory overload, echolalia, stimming, and the potential for hurt feelings among typically-developing peers who could feel ignored by someone on the spectrum when they don’t respond to their attempts at conversation and play. This is important work happening here guys.

What is Sesame Street’s goal with bringing Julia onto the show? In my humble opinion, it’s to give young viewers an introduction to a disorder they will very likely encounter somewhere along the line. Maybe some of them already have, whether through a family member or a preschool classmate. It’s a conversation starter; a seed that’s being planted in young, developing minds, and tender, open, compassionate hearts. It’s priming this next generation to not just tolerate autism, but to live alongside it as allies and advocates; to hear the word and see the person and not recoil out of confusion and fear, but to embrace the differences in their peers diagnosed with the disorder. It’s laying a foundation; a sturdy starting off place that allows for continued education about and insight into our loved ones, some of the challenges they face, and the triumphs they work so hard for.

Julia’s job is not to make you and I feel like our lives are finally being accurately captured, or to encompass every heartbreaking roadblock our children face. Again, I don’t blame you for wanting that; I want it too. Our children’s stories deserve to be told. Our families deserve a voice. I just don’t expect Sesame Street to be the platform. The things you and I have watched our sons and daughters go through is not appropriate for these tiny little humans to be confronted with. I can barely make sense of it myself most days; how can I possibly expect a young child to digest it?

I agree with you on this: Our families need more representation in film, art, and media. It’s hard seeing versions of autism that never seem to match our own. There’s a lot that our children go through that isn’t being told, that needs to be told.
So, let’s tell it. To an audience that isn’t learning its shapes and colors.

I’ll start. I promise. In fact, telling Andrew’s story is truly something I feel called to do and it’s about time I do it.

In the meantime, I ask that you give Julia a chance. She’s pretty spectacular. The way she flaps her arms gives me goose bumps. I so wish she had been around in 2004, when we were first diagnosed and I bought into the idea that flapping was something we had to eradicate in order for Andrew to be accepted in the world. How I wish I could take back all of those “Quiet hands,” commands. I’m so glad moms and dads facing a new diagnosis have Julia to show them it’s okay to flap; in fact, it’s downright beautiful.

Julia is not like my Andrew. He is, after all, a 15-year-old boy living with very severe non-verbal autism, intractable epilepsy, PTSD, and intellectual disability. He’s also in the midst of puberty (Sweet Merciful Mother, save us from these hormones). But what they do have in common is the right to be loved and accepted, accommodated and respected.

And thanks to Sesame Street, I think Julia’s viewers are going to help make sure of that someday.

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{ 48 comments… read them below or add one }

Kelly Rhoades April 12, 2017 at 11:49 am

YES.

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Ceejay April 12, 2017 at 12:37 pm

While she’s not representative of our child’s experience on the spectrum either, what I really liked about how they did it is when the “what is autism?” comes up they don’t give a blanket answer. Instead, he says, “For Julia, it means…” which is an amazingly on point approach for answering something so complex and diverse to young children. No two kids with autism have the same experience (even if they are members of the same family), and by nature of being a spectrum, it is hard to capture a single representation. I really tend to agree with your assessment here… sometimes baby steps are more significant than they get credited. I can’t fault them for an incomplete representation because it is still a) a real one, b) teaching children acceptance (which in the end, will still benefit children who aren’t like Julia), and c) information a process, not a once and done event.

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Beth April 19, 2017 at 12:45 pm

Couldn’t agree more! Great post and great response!

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Christina April 12, 2017 at 1:30 pm

Yes, yes, yes. It’s a children’s show! Thank you for this post!

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DeeDee Burke April 12, 2017 at 1:32 pm

This is a beautiful article!

I read all about Julia being introduce d to the Sesame Street family and the process they went threw to ensure they were on the right track. Which traits to include, things to avoid so not to offend and the best part! The woman who is the puppeteer for Julia has an autistic son. She encorporates his behaviours and triggers bringing her more to life. They have 2 seperate sets of arms so that when she starts rapid arm movements its more realistic. The whole purpose of bringing her character to the street is to introduce littles to more common autistic characteristics that they wil encounter when they begin schooling so that its not a shock, its not scary they will be able to relate it to Julia and identify that she is scared, somethings is wrong, etc and be able to act in a manner that can be more helpful or soothing.
Although it doesn’t compare to the struggles faced at home, it can certainly help to lessen the fears and hopefully make interactions in school a lot less scary or worrisome for both parents and children that are affected.

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Carla April 12, 2017 at 1:35 pm

It seems that Julia can do a lot for society. If young children understand stimming and other comparatively minor things about autism, they won’t have to learn it later. They’ll know a basic definition that will build up to the possibility for self-harm, to puzzle piece or not to puzzle piece, etc. They’ll have a clearer understanding as adults, and therefore they’ll be more accepting.

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judy cleverly April 12, 2017 at 1:40 pm

I agree, it’s an introduction to finding out Autism isn’t so strange! It’d okay to be autistic! It’s a beginning to understanding!!❤

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Paula April 12, 2017 at 1:45 pm

From a mom who is in the same boat as you I totally agree I am thrilled that Sesame Street is providing an experience for the world. It is a beginning at the beginning of these pre scholars lives.

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E. R. April 12, 2017 at 2:02 pm

Well written !! Completely agree !!!

Mom
Of 8 yr old Autistic son

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E. R. April 12, 2017 at 2:03 pm

Perfect article !!

Agree on all !

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Margaret Miller April 12, 2017 at 2:29 pm

I go a little farther when I talk to children about my son’s ASD. I have seen child after child avoid him like the plague, until I tell them one thing… “David’s a little weird, huh?” Yes, different is a nicer word, and adults are horrified when I use the word weird, but that is what other kiddos are thinking. I never have this conversation in frount of my son, and we celebrate “weird” in my house. But the relief that shows in EVERY kids eyes when I use that word… Then I can transition into telling them WHY David is diferent. As a general rule, every child I have talked to this way, has become Davids friend.

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Michelle April 12, 2017 at 2:37 pm

It’s a spectrum disorder, no character or actor will ever accurately portray all of Autism of our children. If you’ve met one person with autism, you’ve met one person with autism. It’s not a one size fits all disorder.

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Karen Young April 12, 2017 at 2:37 pm

It’s a great beginning for minds just beginning to formulate the idea of individuality.

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Heidi St. Onge April 12, 2017 at 2:37 pm

Good article. I agree that this introduction to Autism should be kept basic due to the young ages of the target audience. To put a muppet that has severe autism like our children would probably scare these young children more than teach them

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Ellyn April 12, 2017 at 4:26 pm

Awesome post. You have been able to clearly articulate many things I have been feeling but have a hard time expressing. I’m going to bookmark this! Happy to have found your blog, too.

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Linda Krueger April 12, 2017 at 4:52 pm

Bravo!! I’ve been contemplating telling our family’s autism story for a while now, but I’d have to tread very carefully as our son is 18 now and probably doesn’t want to have his life laid bare. I’m hoping to find a happy medium that will still be helpful to those families out there who are still navigating this never-a-dull-moment life that is autism.

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Cathy Mealey April 12, 2017 at 5:07 pm

This is a GREAT line, IMO:

“Julia’s job is not to make you and I feel like our lives are finally being accurately captured, or to encompass every heartbreaking roadblock our children face.”

Although I would hope that Julia’s parent(s) would be introduced eventually because typically, an ASD child like Julia would not be out “playing” on Sesame Street without a caretaker being nearby and helping to facilitate their interactions.

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Kate Byers April 19, 2017 at 2:44 pm

Yes but all of the kids on Sesame Street play in the road with little to no supervision in ways that are not realistic for life in 2017.

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Wendy van der Walt April 12, 2017 at 6:02 pm

So much love for this post. Perfectly written, and perfectly on point.

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Loren Kaplan April 12, 2017 at 6:13 pm

Beautiful, Jo, as always. And although I no longer have a 3-5 year old, I watched a video-clip of Julia, and I’m so very happy she’s joined Sesame Street for exactly the reasons you mentioned.

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Laura Sylvester April 12, 2017 at 6:48 pm

Fabulous! YES! Thank you for using your almost new degree to hit the nail on the head! AND Congrats on that degree BTW! I believe it is us Mom’s that will change things for our kids! Just like Julia’s puppeteer! Signed, an Autism Mom (son 16 and non-verbal)

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Anne M. Sydor April 12, 2017 at 7:57 pm

Thank you.

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Kelly April 12, 2017 at 9:13 pm

Look it describes my son not all kids are like some are.
So what yours isnt get a job and stop trying to cause controversial
Problems. You have to much time on your hands

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Angee April 13, 2017 at 10:07 pm

Kelly – I recommend you read this blog post (all the way through) and then delete your comment. You have time on your hands to comment but only enough time to skim through it before commenting.

Jo Ashline’s actually in agreement with you – trying to combat the controversy you think she’s causing. If you had read what she wrote, REALLY read it, you wouldn’t have missed the fact that she knows Julia is like some on the spectrum (like your son) and she feels that Julia is the right Muppet for the job. She’s doing YOU and YOUR child a solid.

You’re welcome.

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Jo April 14, 2017 at 2:28 am

Thank you Kelly!

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Noni-Ayanna Roach April 12, 2017 at 10:44 pm

Exactly! Well said! How would one character capture the reality of all our kids anyway? Autism is a SPECTRUM…But if Sesame street can capture some of it for little minions and teach tolerance and acceptance, and perhaps even how to interact with an ASD child, then I say way to go!!!!!! I was excited to see the character and I, too, wish it was out in 2004 when my son was first diagnosed with Autism at 1.5! I really do…

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Jennifer Miller April 13, 2017 at 3:06 am

I think it’s important to note that when the human was explaining things to Big Bird, he used keywords like “sometimes” or “usually”… indicating that there are exceptions to every “rule” and no two individuals with a developmental disorder such as ASD are the same. Like another mentioned, I loved his response when Big Bird asked what Autism was. It was specific to HER, not generalized. He also made a point to stress that it’s important to just ASK QUESTIONS so you know how to best support someone — and I think that’s important with all humans, not just those with ASD and the like.

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Krista April 13, 2017 at 5:50 am

What great thoughts! As a fellow autism mom and psychologist (finishing a PhD in cognition), I completely agree with you. My 9 year old needs time everyday when he gets home from school to decompress. His 5 year old sister and 6 year old cousin don’t always understand. It’s hard for them to not take it personally, but I try to help them understand it is autism. The sensory overload is a big one for little kids to see and not get, so this is a great way to help expose them to neurodiversity and acceptance. This is a great way to introduce the autism spectrum to young children. We don’t watch SS in our house anymore, but we have been keeping up with Julia!

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Alma April 13, 2017 at 10:05 am

Beautifully written. It is all about helping younger children understand about Autisum. Its great that we can talk about it now adays.

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Angela April 13, 2017 at 10:43 am

Yes! Thank you so much

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Natacha April 13, 2017 at 12:45 pm

Thank you for sharing this and honestly it provides an intelligent approach to how
Any individual should make efforts to understand the messages being communicated and why. These days we’re all so quick to provide and uneducated opinions so yes let’s try to understand the subject matter before we get on our soap box to criticize.

Much love!!

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Juliet April 13, 2017 at 1:45 pm

Excellent article, right on point, great job! Honestly, i don’t find that I have time to read full articles about anything other than IEP’s, school regulations, transportation issues, the latest on Aba practice, etc. However, I read the full article and agree with you completely. Thank you for sharing!

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Susan Cherian-Joseph April 13, 2017 at 3:41 pm

This is a well written article. As an Occupational Therapist and a mom to an amazing 8 year old with ASD, I have to say that Julia is a good beginning.. I am so fed up of society equating kids on the spectrum with Rainman.. Flapping or any repetitive behaviour- stimming is the way our kids express themselves and self regulate. We have to remember that no one would ever be Able to depict or portray Autism Spectrum Disorder because it is a SPECTRUM disorder….. my son is not like any one else and that’s what I love … he is unique as God has made him one of a kind so lets all work together to accept ALL and not try to dissect whats wrong with JULIA but lets be HAPPY that it is more realistic than RAINMAN…. Susan Cherian-Joseph OT Reg. Ont.

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Elizabeth April 13, 2017 at 6:50 pm

I totally agree. Well said.
-Mom of son with autism

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Kate April 13, 2017 at 9:36 pm

This is a fantastic article. I wish that Julia had been around so so much longer and not for the reasons of most posters here. I agree entirely, she plants a seed of acceptance, compassion, and understanding in a world severely lacking. I’m 30 years old. I don’t have children…it’s hard enough to keep a significant other…because I have autism as well.

From life experience I can’t relate in anyway to people who live with severe autism or a child with one. I do know that these people, despite their trials faced in learning how to take care of their family member with autism or in trying to make life even a fragment better for them, despite how frustrating,overwhelming, and consuming it is–these are the people with the truest most genuine of hearts. Someone who can see us for our potential not the “flaws” society enjoys pointing out.

I can say I can only imagine how much better my childhood might have been had someone cared then, had children not responded to me as some sort of pariah. As I’m sure you can tell I have a high functioning form of Autism…it never made anything easier. The abuse directed at me by my peers was nothing like what someone even 5 years younger than me endured so parents, rest assured, people are learning, educating, and embracing…they kind of have to now that the reality is that at some point in their lives they will encounter an individual with autism.

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Melanie April 13, 2017 at 10:31 pm

Now if we can get parents to stop pretending autism only affects children. We are supposed to either be cured or disappear when we are grown up, according to things parents say.

If you really want to love your autistic children, I suggest stop trying to make autism a condition of childhood, because it’s not.

Before everyone starts following this with hateful replies, I’m reacting to the blog and comments, not to the show. Your children usually grow up. Please stop pretending It’s all about the parents and young kids.

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Melanie April 13, 2017 at 10:44 pm

Now if we can get parents to stop pretending autism only affects children. We are supposed to either be cured or disappear by the time we are grown up, according to things parents say.

If you really want to love your autistic children, I suggest stop trying to make autism a condition confined to childhood, because it’s not.

Before everyone starts following this with hateful replies, I’m reacting to the blog and comments, not to the show. Your children usually grow up. Please stop pretending it’s all only about the parents and young kids.

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Jo April 14, 2017 at 2:27 am

Melanie, I can’t speak for all parents of course, but I can speak for myself when I tell you that I think about Andrew growing up and becoming an adult all the time. It scares me. He will never be independent. He will always need someone trustworthy, compassionate, educated and qualified to help him in nearly everything. Those of us who talk about children with autism are doing so because our children ARE children. You have a lot of generalizations in your comment and if you are directing them to me, I can say without a doubt that you are very wrong on all accounts. I wish you well and I’m sorry you’ve come across people who give you the impression they wish autistic adults didn’t exist. I hope you are supported and surrounded by positive, empowering people that see the value you bring to the world just by being in it.

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Monica Calderin April 14, 2017 at 3:19 am

As a mom with a teenager on the severe end of the spectrum I couldn’t have said this better myself. You hit the nail on the head. This show is for 3 to 5 year olds!

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Ginny April 14, 2017 at 2:41 pm

This is great, is it ok if I share it on my blog with a link to your blog?

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Jo April 14, 2017 at 4:03 pm

Of course! Thank you!

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Susie Weaver April 14, 2017 at 8:34 pm

A friend shared this article on her FB page; otherwise I would never have seen it. It is amazing! While I majored in Special Education many years ago, I just want you to know that I am more educated about autism now than ever before. Just wish I could have sat down with my now grown sons or with my grandchildren when they were Sesame Street age and shared Julia with them. Today, more than ever, we all need to be truly compassionate! I think the best role models still live on Sesame Street!

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Diane M. Rodriguez April 15, 2017 at 2:36 pm

Thank you for writing such an amazing article.

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CJ April 15, 2017 at 8:02 pm

While it’s true that Julia doesn’t represent the full spectrum, it’s also true that this is only her first episode. Maybe she’ll show the audience the more grim aspects of autism and maybe she won’t, but Sesame Street is, after all, geared toward small children — and this is a level of the spectrum they can get their heads around. To show harder cases right away could be overwhelming for them. This way, at least, they know autism exists, and it’ll open the door for them to learn more about it as they age; and this episode also shows that Julia’s got remarkable talents because of it. I would just like to say that if Julia takes us to deeper, less light-hearted levels of the spectrum, she’ll do it in her (and the producers’) own good time.

I make that point about “time” because I’m an actually-autistic adult who didn’t even find out that I was autistic until my early 20s, because my parents kept it from me even after they started to suspect it. I grew up just thinking I was broken, irreparable. It’s only recently that it’s occurred to me, the brain grows and develops right along with the body, and a growing mind can learn how to use its autistic talents to great advantage, just like a foreign language or a branch of science. It’ll take years, but it’s not out of the question.

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Tina Brooks April 15, 2017 at 8:08 pm

I am 51. I was Dx’d with Aspergers Syndrome shortly before the rolled the Dx into ASD.

I watched Big Bird meet Julia and I saw me, then she started to flap. I don’t flap, I bounce.

Then I saw Julia turn and walk away from Big Bird like they hadn’t been having a conversation. My husband said… looks like you.

I truly hope that as the character evolves, we will hear statements like, not all autistics are the same. Or If you’ve met one autistic you’ve met one autistic.

Thank you for writing this. I was wondering how moms with more severely affected autism might react to Julia.

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Planet Autism April 17, 2017 at 12:47 am

So you think “self-injury, aggression, and wandering, and co-morbid conditions such as epilepsy and gastrointestinal problems” are only suffered by “the most severe form autism spectrum disorder”?

I have two highly intelligent high-functioning autistic children, self-injury and aggression are common among children like this. The wandering thankfully stopped relatively early, but it occurred, along with low danger awareness. There are other co-morbid conditions too. And these are the children forced into mainstream school where they often cannot cope. They are the reason why NT children need to know about autism because they are the children the ‘high-functioning’ ones will be educated alongside. They are the ones who will be bullying them too. It frustrates me when parents of so-called severely autistic children do not see that the so-called ‘high-functioning’ autistic children can suffer just as much (and in some ways more, because they are so acutely aware of their own difficulties which brings severe mental ill-health and this is the sort of reason suicide is the most common form of early death in autistics) even if some of the difficulties are different ones.

So whilst ‘Julia’ may not represent the more obvious negativities of autism, please don’t use a comparison against ‘severe’ autism to illustrate your point (there is absolutely no such thing as ‘mild’ ASD). In fact Julia, could be one of the many ‘high-functioning’ autistics who mask it all in school and similar environments and go home and explode in violent outbursts, which no professional will ever believe is the same child described as the one they see in school who sits quietly. To the point that parents are actively disbelieved and in some cases falsely accused of making it up and that can have (and is having), who have to battle so hard for support and help for their child, having serious repercussions for families.

Otherwise, you have been logical about why the young age of the audience means they need to be careful how they present the autistic character.

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Brian White April 18, 2017 at 1:23 pm

I’m really glad I read this. I feel as you do about Sesame Streets approach and they themselves said as much in the news programs in the weeks leading up to that episode that they knew they couldn’t serve every experience and so worked hard to write, rewrite, etc to bring something of value to light.

My late sister was severely handicapped and I remember one time when the Special Olympics world games were happening nearby and my mother seemed so upset at that organization when I thought she’d embrace it. But she was angry that there was nothing to honor people with my sister’s conditions or to honor those that care for her directly through the Special Olympics. but I saw they were doing what they could, directly serving a portion of the group while shining a light on all the associated causes and groups, etc. You see similar examples with other groups who try to bring the issue of a whole group out but focus on making a direct immediate impact on one aspect..like Habitat for Humanity, etc. Only a small percentage of the kids watching Sesame Street this era (and my 16 month old is one) have to be impacted positively for this to make a huge difference down the line.

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Heather Parker April 26, 2017 at 3:41 pm

My son is 3 and has ASD. The peace and calm knowing that the peers he may someday interact with have been introduced to autism with such a lovable character as Julia eases my anxiety. One of the things that scares me about my sons life is not how I will care for him, but how the world will treat him.

This is such a monumental step in the right direction in changing the public opinion and feelings toward Autism. We may have a generation that grows up tolerant and accepting because they remember that Elmo loved Julia. It means more than some realize.

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