Sunday, October 25, 2015

An open letter to Sesame Street: How an Autistic/ Aspie feels about the Sesame Street Autism Awareness: The Good and the NEED for Improvement. #seeamazing

For a more in depth look by another Autistic blogger covering Julia (to be honest I did not watch any segments on Julia because I could not find them! I found out today she is not even a real muppet!)  more specifically and the Ableism Sesame Street is allowing click here: This link puts more effort and more words into what bothered me but I could not put my finger on.  I really was trying to be positive but this approach from Erin is well balanced. Esp the part about the leash. I was disturbed but I could not put it into words. Also this post is excellent too:

When I first heard about Sesame Street's Autism movement ( I was wary. There have been many instances of people trying to advocate for Autism with good or bad intents, but instead propagating ableist language. Often I will hear a story that is supposed to be on behalf of Autistics, that give us LESS of a voice. We are often spoken about in "othering" terms or with the patronizing assumption that we are afflicted with our "condition." Because Sesame Street is a crucial part of our culture, I felt like I could not ignore their platform. My heart was pounding and my fingers were slightly sweaty as I clicked on the site. I knew if this was more of an Autism Speaks (click HERE or  HERE OR HERE for a post about why this organization is NOT supportive) situation there would be a slew of misinformation and perpetuation of prejudice in the making. To my relief, it wasn't completely this way though there were undertones of ableism and othering in a few instances.

I was drawn to the cartoon video first. Immediately I felt encouraged because it was made BY Autistics (a group called Exceptional Minds.) I became slightly teary because FINALLY our voices were being used and included in the Autism dialogue.  Because I was still feeling a tad insecure about it all, I called my children to listen. I felt a true test would be an Autistic child's feelings toward the subject. I told them we were going to watch a Sesame Street segment without any further explanation. The giggles happened right away. My eldest son ( who was the first in our family to have his Autism diagnosis) kept nodding his head, giggling and saying statements like, "Hey that's like me!" or "I don't like listening to loud music either" or "I also like to be by myself sometimes." We re-watched it again and each of them took turns talking about what they liked. It wasn't demeaning, condescending nor was it cloaked in ableist language. We loved Benny's Story.

Because that video was met with acceptance and approval I clicked on some more. I will be the first to admit I did not finish all of them so for an extensive review please see Erin's link above this post (she also covers the first person language issue well.) I was worried that autism as a spectrum may not be shown. Luckily, non verbals and verbal autistics were included. However, what was missing were adult autistic voices. My kids and I had a tougher time with the parental interviews. While the parents are definitely doing the best with their children and are trying to be autism advocates, sometimes as autistics ourselves, it's hard to hear "how we are" by those who do not share our wiring.

For instance in the video "Being a Supportive Parent (click)" a little girl with autism is shown plugging her ears while they sing Happy Birthday. The narrative focuses on how she finally was able to blow out the candles. While it is a great thing to celebrate achievements, I found myself feeling sorry for the little girl because once upon a time I WAS her. I still loathe the song Happy Birthday and even requested my in laws to stop singing it to me. I also asked them if I could open up their gift privately but then share my love of it with them later. At first I was looked upon as ungrateful and weird, but when I explained how it made me feel and what I was experiencing, they lovingly stopped singing and instead chatted with me. I opened their gift in private but then brought it out with the appropriate reactions and platitudes. When I was younger, I plugged my ears when I heard the song Happy Birthday. I even received a few swats as a child for not listening with a smile on my face. I melted down and once I started kicking and screaming. To me, the sound was painful. I also did not like being the centre of attention. The smell of smoke made me feel threatened. I wanted people to enjoy themselves and eat the cake, but I didn't want them all looking at me and directing their singing towards me. I didn't know where to look and I felt the dread of being unsafe.

In the "Being A Supportive Parent" segment, I love how the father was choked up about his daughter blowing out the candle. He is obviously a great dad and his love for his daughter is amazing. It's also fantastic that she blew out the candle if that is what SHE was hoping to achieve. But I felt like the bigger picture was being missed. Maybe she was afraid of the candle?  Maybe the flickering flame was causing sensory overload? Maybe she hated the attention? Luckily, as I became older I was able to verbalize these concerns. Unfortunately, younger children or Autistics who are non verbal and have not yet learned alternative ways of communicating may not be able to explain. My ultimate question would be: Why did she need to blow out the candle? Why do we have these traditions and typical milestones as the goal when a child is wired differently? Why is that an achievement? Yes, everyone, neurotypical or neurodiverse, needs to learn some basic cultural rules, but why does it seem that those who are neurodiverse have to assimilate more without questions?  Why can't those who are neurotypical also question the traditions? We don't sing Happy Birthday in our home unless the child requests it. Instead we ask our children what would make them feel special. If they can not put something into words, we take their behaviour AS communication. If they are melting down or seeming to space out into their own world, it is not something they are enjoying. We avoided lighting candles the first 7 years. We simply put on a colourful, happy themed candle unlit. One year it was a Elmo candle because my son was obsessed with Sesame Beginnings. He lunged for the candle with joy and it was safe to do so. The sensory climate suited his needs and everyone was happy.

There was also another aspect of the videos our family had a tougher time with. My autistic ten year old was visibly upset after this video:  He mentioned that it made him "feel like the people are saying that everyone makes more progress than those with Autism and that they have to work so hard to be with us." I know that the video was trying to offer support for parents and maybe it was not an appropriate video to show my ten year old, but I thought that most videos on Sesame Street would be safe. We chatted about how much the mother obviously loved her child and how the parents are doing their best to understand Autism even though they do not have it themselves. I mentioned that it can be hard to fully understand a different brain wiring if it's not the wiring one is born with. It ended up being a great conversation about perspective taking and empathy with my son. I pointed out that he feels the same way about understanding neurotypicals sometimes and it would be unfair for us to expect them to understand us fully if we can not understand them. We have to speak about our own experiences in the world and sometimes we will speak about those without Autism in "othering" terms because it is not our experience. We can't blame others from doing the same, but it would be validating to see more of a minority portrayal and less of the norms. We have to own our stories. It's important that we each approach, with grace, the fact that each of us has our own ways of seeing the world. He gave me a side hug after our chat and said, "I'm so glad you are also Autistic mom. I love how you understand me." It was a moment I am thankful to Sesame Street for, however, I do want to ask Sesame Street to think about including interviews with actual parents who are Autistic themselves. Also, it should not be the case, if a children's show is trying to support autism, to have to cheer up my child.

I have not watched any segments with Julia but I am happy an autistic muppet is in our midst if they do well by her.  Extra points for it being a girl. I dare to trust Sesame Street with portraying a loveable and unique muppet with autism but only time will tell. Sesame Street has done a reasonable job of including the voices of various people on the spectrum from verbal to non verbal especially in including Exceptional Minds in one of the videos. But there were voices that were missing. Where were the parents who have Autism with their perspectives and the unique ways they parent and see their child?? Where are the adult autistics? While I applaud Sesame Street for attempting a loving, accepting and normalizing voice in a world where much of the dialogue about Autism is negative and ableistic, I still would like to see more inclusion and less tones of othering. 

I love that Sesame Street included autistics in the making of Benny's video and my family would love to see more from Exceptional Minds incorporated into television.  The puppeteer that played Abbie adapted at any situation and kept the focus on the beauty of each child. When an eager little autistic girl gave her an aggressive hug, Abbie made a loving statement with some humour thrown in and my children were in giggle fits. The lovely aspect of this is that they were not laughing AT any behaviour, they were laughing with Abbie and her funny voice. I did not like that the child was coerced into a hug but I did love that the hug itself was not mocked by the puppet. I was impressed that the overall sentiment attempts were that different is also normal. 

Autistics may see the world differently. We may act differently depending on the varied sensory information bombarding us...but we have friends, rich inner lives, and abundant ways of giving to the world. I want a public television program to acknowledge this fact with sensitive dialogue, researched approaches, and the inclusion of voices actually on the spectrum.

Thank you Sesame Street for  attempting to celebrate the neurodiverse and hopefully teaching a new generation that different is not less. But I want to see improvement. I want to hear Autistic voices and autistic parents voices. At best, hopefully bullying of minorities and differences will go down because children are learning at an early age to understand different behaviours in their friends. Hopefully, parents can also learn from this process, as well as Sesame Street itself.

Have you watched the Sesame Street segments on Autism? If you are Autistic how did it make you feel? What would you wish for Sesame Street to include?


My Little Warriors said...

I have been hesitant to look into it. I've had a few friends tell me how wonderful the think it is and how excited they are for me. Thank you so much for writing on this.. it makes me feel better knowing they are starting in the right direction. I love your thoughts about the little girl and blowing out the candle ... When you share your feelings on things like that it helps me to see even further into my boys and question exactly what they need and the place that need is coming from. I hope that this encourages other early educational programs towards inclusion and proper awareness! ❤❤❤❤

Angel the Alien said...

I think it is pretty cool that Sesame Street has worked so hard to help neurotypical people understand autism a little better. I am a little bummed that Julia is not going to be a real muppet at all, but just a cartoon character in a digital storybook. I would also like to see some more things there that are geared TOWARDS autistic kids, instead of just ABOUT them. Plus they really need to be careful to be sensitive about stressing what a burden the autistic children are to their families. Some children with autism will be watching, and shouldn't have to hear the message, "Because you are different, you are really sort of a pain."

Kmarie said...

My Little Warriors: Thanks! I would highly encourage you to click also on the other two linked reviews at the top as their perspective covers what I did not. I am glad my candle experience helped you with some perspective...I hope that they will go in the right direction and I guess only time will tell... Thank you for your encouragement and support.

Angel: I actually did not know that Julia was not a moppet and your comment was the first to inform me of this...( I did not do full research on this topic...) That really does suck. I would also like to see them gearing things towards instead of about them. YES!!! My son picked that up right away and I did not get him to watch the other parenting videos because of that...made me feel a bit sick to my stomach...he is not a burden and neither am I! I completely agree! Thank you for your comment!