The Importance of Autistic People Seeing Reflections of Ourselves in Media – Sesame Street, Julia and Me

I kept seeing a link over and over again in my facebook feed yesterday and today which got my attention, plus a friend shared it on my wall. Once I saw what it was all about I hit the “share” button and started to type out how it made me feel. It quickly became something that belonged here on Echoes of Mermaids and not a fb post.

LINK ⇒  http://www.people.com/article/sesame-street-introduces-autistic-muppet

Fuzzy favorites Grover, Abby and Elmo are joined by their newest muppet pal, Julia, a character with autism, in Sesame Street Workshop‘s new nationwide initiative.”

                                             Meet Julia!! She’s Autistic!

image (c) Sesame Workshop/Marybeth Nelson

image (c) Sesame Workshop/Marybeth Nelson

If you’re NeuroTypical (LINKhttp://musingsofanaspie.com/2013/01/10/what-is-neurotypical/) you might not understand what a big deal this all is, and that’s okay because it’s probably not part of your life experience unless there are Autistic people in your life. So let me tell you why this means so much to me as an Autistic person.

I was born in 1969, the same year as Sesame Street as it goes. I’m actually 8 months older! How special and really life saving it’s been to grow up with them, to have our beginnings intermingled as they have. It’s lucky I even got to see it! Growing up in rural East coast Canada we only had 2 channels — 3 when we could tune in the French one. So this show was a standout not only in its content, but also its longevity.

I can’t ever remember not feeling different from everyone else in fundamental ways that seemed to keep me separate no matter how hard I tried to fit in and be liked. Trying to be understood was nearly impossible.  It was like I had a really important secret that even I didn’t know. Everyday I searched to figure out what it was that seemed to prevent me from connecting to people like I did to animals, to plants, rocks, stuffed animals, the moon and the stars, colours, cameras, books, the number 3 to music most of all.

See, despite a frantic search for a reflection of myself in other people whether in person or on TV I never could seem to quite find it, nor did I go about it in very good ways at times. I was always looking for some sort of ‘sign’ that I was connected to someone else because I just don’t understand the supposed natural process of it. Sometimes I’d find what I thought were enough signs and I’d become out of control about it all, mostly in my head. I’d emotionally suffocate people once I grabbed a hold – all trying just so desperately to figure out where I fit but more so – WHY wasn’t I fitting in despite all my very young mind had come up with to try to make that happen.

The pressure I put on myself for being different — and then trying to crack the code of fitting in because when I acted as my true self it just wasn’t tolerated mostly — was staggering even at the age you see in the photo below.

A girl and her plastic dog. Grade Primary - 1974

A girl and her plastic dog.
Grade Primary – 1974

Sesame Street instantly became something I looked forward to seeing SO much. I could have watched it all day, along with a show that very few may have heard of outside of Canada called “Bixby and Me” (“Bixby Says… Reeeeeelaaaax.”)  I was actually introduced to Bixby at my one room Schoolhouse where I attended Grades P,1 and 2 and walked uphill – just one way – to get to school.  That’s my School picture above and when I was Reeeeeelaaaax‘ing with Bixby!

♪ It's Bixby and me, we live in a tree, and for miles around, there's so much to see. There's plenty to do, and people to meet, so come on along, with Bixby and me ♪

♪ It’s Bixby and me, we live in a tree,
and for miles around,
there’s so much to see.
There’s plenty to do,
and people to meet,
so come on along,
with Bixby and me ♪

Those 2 shows became what I relied on for the majority of my “scripts” (LINK to YouTube Video about Scripting ⇒ https://youtu.be/vtbbmeyh5rk ) from pre-school through to about grade 3 or 4 when those scripts didn’t work anymore with my peers. Even at 46 years old I love it when I find someone who I can communicate with using just lines from Sesame Street or other childhood favourites as the main language.

Until 2011 when the seizures started my life was a seemingly endless cycle of trying to find reflections of myself in others so I could figure out how and where I belonged. So I could maybe be like others and answer questions with ease and not the awkward way I did. So that when I was a kid I could figure all the weird ‘girl’ toys out (umm Barbie? Yeah, I don’t get that whole thing) and look happy doing it because that’s what I saw reflected back to me and it’s what was asked of me.

I was supposed to want to play with other kids and expected to know how. But I wanted the time alone in my room looking at my Kaleidoscope or my Viewmaster to be respected as important to me. My escapes from so many failed attempts at play and friendship because they truly made me feel happy and I didn’t have to struggle so hard.  I was fine with hanging out with my Grandmother, or my pet rabbit, or my abundant ‘favourite’ rock collection.

I also remember watching Romper Room in hopes of hearing my name!

Romper, bomper, stomper boo. Tell me, tell me, tell me, do. Magic Mirror, tell me today, have all my friends had fun at play?

Romper, bomper, stomper boo.
Tell me, tell me, tell me, do.
Magic Mirror, tell me today,
have all my friends had fun at play?

                “I see Robert and Kathy and Mark and Emily and Pa….trick…”

                                               (maybe next time 🙄 )

Because despite wanting those times alone there were also times I wanted to be seen, to be acknowledged, to be understood. I knew I had so much to offer the world but I just couldn’t seem to break through. I notice to this day (literally) conversations end when I participate.

Shows like Sesame Street helped me to be able to exist around my peers enough to just get by. Just getting by never fills you up though, so you’re in a constant state of losing ground – well, sanity really.  I used my scripts from the show and the things I learned from the various skits as ways to communicate with others. But I rarely ever saw myself, even in a show as diverse as it was. It was teaching me ways to be around others but was it really teaching others how to be around and accommodating of me?

They’ve taken a giant step forward in this regard. In giving Autistic kids the opportunity to see a world accepting of our differences. To see that we can fit in on our own terms and not spend all of our processing abilities on working to blend in and hide the things we need to cope – like stimming to self regulate for example.

And they’ve done something which is what ultimately allowed me to feel good about talking about this on my website. They worked with ASAN for the past year on this project!

ASAN‘s Statement on Sesame Workshop’s “See Amazing” Initiative.
LINK ⇒ (http://autisticadvocacy.org/2015/10/asan-statement-on-sesame-workshops-see-amazing-initiative/)

ASAN was able to accomplish this with the tireless advocacy of so many actually Autistic and our allies who work with Boycott Autism Speaks. They pushed for Sesame Street to partner with more than just Autism Speaks, who as it goes is not a good organization at all.

I’m also including a link from ‘The E is for Erin’ that offers a very in-depth critical review. There are many very valid points.

LINK ⇒  http://eisforerin.com/2015/10/23/not-in-love-with-julia/

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

I checked out the interactive book on their website called “We’re Amazing 1, 2, 3” and cried at finally seeing a reflection of me on Sesame Street. And because when you’re an Autistic female you’re just that much more invisible, having the character be a girl means so much.  As an added plus orange is my favourite colour, like, favouritefavouritefavourite and Julia’s hair is orange!

Julia and Elmo – image (c) Sesame Workshop/Marybeth Nelson

They even have a page dedicated to just Autism!

LINKhttp://autism.sesamestreet.org/

This wouldn’t have even been possible just 5 years ago. I’m excited by the progress in the places it’s happened and a bit more hopeful for the barriers we have yet to break down. I can’t imagine Sesame Street is any less impactful and influential to the young minds that watch these days. The effect of this is beneficial for everyone which is a giant step toward how it should be.

I think though, I’m most excited for #ActuallyAutistic parents of Autistic kids who grew up with Sesame Street. To watch as they see themselves reflected in a positive and accommodating way will I hope, offer some healing for how so many of us were continuously forced to hide who we really are.

I’m really hoping Sesame Street continues to grow this part of their programming. It’s a step in the right direction, but we have a long way to go. Julia needs to transition from being purely digital to a “real” life character in the show so that this becomes far more inclusive. There needs to be Autistic characters of different races.  Black girls especially have a real difficulty being diagnosed and having access to services. We need Autistic LGBTQ characters.  Autism is a commonality — but we are all very different. The public image remains that it is mainly a young white male issue, but that’s far from the overall picture.

I don’t have children, but I have a Great Nephew who is just a year old and it’s a good feeling to know that this far more inclusive Sesame Street is the one he’ll grow with.

Welcome Julia! Lucky for me I already know the way to Sesame Street 🙂

See you there!

finding my way through Autistic Burnout

I realised something just recently – I’m burnt out. Talking with my one sister about it I said, “I dipped my toe into burnout” and she laughed and questioned, “Just the toe?”

Okay, so I went in up to my knees…” (she laughs at me, again)

FINE I WADED INTO MY WAIST!!

Being Autistic and finding yourself in burnout is a big problem. I’m not talking about when life gets a bit overwhelming and you take a break and can regroup and carry on. This type of burnout is a big problem with very little literature available to help guide us through it, or even help prevent it. The only ones to talk about it are actually Autistic adults like myself. It wasn’t till we started communicating with each other that we realized what it was that was happening to us. I know it was both a relief and terrifying for me to finally have a name for it. Autistic Burnout.

While many people go on vacation to recharge from their own version of being burnt out, it was being on vacation recently that helped me realise just how far back down that rabbit hole I’ve gotten myself.

alicerabbithole

Oh Alice, why must you run off like that, chasing those rabbits…

A few weeks ago my friend and I got to the spot we call Paradise to set up camp which you can’t just drive to — you have to hike into — quite early, and were all set up and ready to go by noon. Once set up I found myself just sitting a lot. Sitting and looking at this…

canal_lake_3_sept8_15_k20d

I’d sit in silence and marvel at the calm that made the Lake into a reflective wonder.

canal_lake_2_sept8_15_k20d

I’d sit and dig my feet and hands deep into the sand. I’d pull out handfuls and let it fall, waiting for a piece to catch the sun and glisten. I’d trace the sand with my hands, fingers wide open and I’d go round and round until I could feel the palms of my hands vibrate all over. The soles of my hands and my feet are almost polished from all the sensory seeking I did with them in the warm, white sand.

I’d sit and watch a single wave come to the shore when the wind was up. I’d find one out as far as I could see and then watch it make the journey to where it ended and contemplate that for a while. Then a new one would catch my eye and away we’d go.

I’d sit and watch the dragonflies, as many as a dozen, dance around me everywhere at dusk.

And I stood in the water a lot, just stood. When the waves were plenty I’d find myself being pushed and pulled by them as they broke against my body. So I’d close my eyes and be rocked by the water. It’s a blissful surrender for me. In that space I can really breathe, the oxygen fills my soul. When the water was calm I’d stand and watch to see if the resident mated pair of Loons would break the surface before gliding by.

canal_lake_1_sept8_15_k20d

And in that space I faced my weariness. With all the distractions gone, I saw how far away from myself I’d wandered yet again. I’m tired. Not just physically, because I am really tired these days, but also just deep-down-to-my-bones, tired. My vital life force feels weak. My memory is a mess, I’m having a lot of trouble communicating and I’m finding myself shutting down a lot.

This is what happens when I’m not being my true Autistic self. So what does that mean? Why do I find it necessary to identify it as Autistic burnout and not just simply, burnout?

Because for 25 years I was labelled as having manic (lovely word, that) depression/bipolar. What incomplete science seen as a manic cycle was really an Autistic person being pulled so far from herself and her internal resources that she would just explode into upsetting situations, extreme emotions, and eventually end with a lack of ability to cope at all. Till that fateful day in January 2012 when I came out of a 3 day coma born of, well, no one should have to go through what I did to get to that place. It was unfair and cruel. Life is unfair and cruel I am told. My brain wiring makes me naïve. I don’t know how to understand how people can be so mean. So it’s easy to catch me unknowing and exploit that. That’s why it is so important that it be seen as a separate experience than a NeuroTypical would go through.

From the moment I accepted I am Autistic, because that took many, many months after the Doctor first talked to me about it, everything changed and I can’t go back anymore. Going back comes with known, serious consequences. I’m not NeuroTypical and while I can do a decent job of passing depending on people, places and things – I WILL suffer if I try to be something I am not for any extended period of time. The longer I try to fit where I don’t belong and acquiesce acceptance, the less I am using necessary tools I need to make my way through this really overwhelming for me world.

The internet is an overwhelming place when you have such a strong sense of social justice and wanting to be truly heard and elevate the stories of others. And when you struggle with the social aspects it can become a very dark place at times. When I finally got to where I could have internet access again after several days without it, I found myself hesitant. And when I did start catching up I felt myself slowly deflating all the good I built up on my trip. So much distress, so many people needing help and being treated unfairly — forget what you heard about being Autistic and empathy — we shut down sometimes because of how deeply we feel, not because we don’t. Don’t carry that lie any further, please.

pg_sept17_15_gs5

Self portrait at night — late summer

The internet is also the place where the #ActuallyAutistic community has made our voice heard in a viable way. I’ve had 2 fairly important, I think, articles published in the last few months. One was a reaction to a local news story (Group homes won’t ruin your neighbourhood, Dartmouth) and a decent amount of work on my part but nothing like the 2nd project. That required reading a 500 page book and turning it into under 2000 word review on what I, as an Autistic person, thought of the book. (Thinking Person’s Guide to Autism : How We Autistics Got to Here: Reviewing Steve Silberman’s NeuroTribes)

The Group Home article which was my 1st ever opt/ed piece ended up being my ‘coming out’ as an Autistic person to all and anyone. I didn’t really connect to that happening till after it was published. This was a local article for a local newspaper that would be read by many locals.  It hit viscerally, just like the moment it hit me that yeah, this is the name for my brain wiring, for how I navigate the world and why I’ve always felt so separate. I actually had a Tribe here on earth and we had a name and I was accepted within that Tribe.  I burst out laughing with unmitigated joy.

What I experience as a joyful thing is still very much not understood or accepted by the majority of people. But I have NO choice anymore. I can’t be what I am not without it making me very, very sick. And since about April when my seizures came back I’ve been steadily getting very, very sick.

What the unwilling-to-see majority don’t get is that I’m not sick because I am Autistic. Sitting by the Lake and able to run my hands through the sand as much as I needed, and it not being a big deal if I was quiet, or noisy. Where I could eat with my hands, get dirty, rock back and forth, hum, script, ramble my endless facts. I was just fine. And when something came up, I could deal with it. In an accepting, accommodating environment we thrive.

So I’ve been taking a social media/comment reading break because I don’t want to get any deeper into this burnout. It’s helping a lot. In the last few days especially I find myself communicating more with those closest to me. I’ve not just gone silent online, I’ve been quite silent offline too. Most days I’ve only been saying a few words verbally. When I’m like this I don’t even listen to music.

I have some very big life decisions that need to move forward now. I’ve been through a books worth of life experience in the past 3.5 years. It finally feels like I have come through to the other side of it. And after being online for almost 19 years it feels like it’s very important to work through most of these decisions in a safe, supported environment. I can’t always just fight for those spaces. I now need to take time to use what I’ve worked so hard for. To walk my talk. To accommodate myself.

And to sit and watch and photograph more sunsets like this.

sunset_canal_sept7_15_k20d

In Absence of Memory – Treasures

I was very, very young when I got my first jewellery box. Like many young girls at the time it was a smallish box, covered in satin and when you wound the “key” at the underside of the box then righted it and opened – a ballerina appeared, spinning, as the music box played a familiar tune. Mine had a very delicate tutu. I wanted to be a ballerina back then. I even took a few lessons.

Over the years the jewellery boxes have come as birthday presents, as Christmas presents, from friends and relatives alike. They’ve been small, they’ve played tunes and not – they’ve been grand and had many sliding drawers and doors with glass that opened and closed. And they’ve been simple too, an eclectic mix but all loved for many different reasons.

(all the pictures in this entry will open to their fullest size in a new window when clicked)

Jewerley box

Jewelry Box – Simple on the outside but on the inside…

I don’t quite remember where ↑ this ↑ particular one came from, and I don’t remember how it got to where it was when I pulled it from the depths of a clothes drawer that hasn’t even been accessible in a very long time. But as soon as I saw it a few days ago, I yelled out loud and hugged it.

Treasures revealed

Treasures revealed

And when I opened it? Oh my, how can I explain the collective sensory explosion that took me over? My eyes unable to rest in one place for more than a few seconds…is that? Oh my! I haven’t seen that since? When did I see that last?!

It took me a few minutes to even touch anything inside. I felt an almost reverence towards the chaotically placed contents. I wanted them to rest a bit longer in place before I went to stage 2 of sensory exploration – touch.

Bunnies and FlowersKey chains and bracelets

With each touch of a necklace, a brooch, obviously 80’s earrings, I was granted access to pieces of myself that I didn’t even know were lost. My memory loss has been a bit of a mystery to me. Not how it happened, that part is perfectly understandable though it’s taken me a while to really see the extent of it which is also understandable.

Necklaces

Necklaces! I made the Dream Catcher on the bottom left side.

The mystery is in how I am not as panicked as I thought I’d be. I had a spectacular eidetic (also known as photographic) memory most of my life. I was always worried about what it might be like to lose it. But it turns out you might not stress what you don’t remember, or at least that’s what I’ve come up with so far.

Watch

From a trip taken to Prince Edward Island in the early 1990’s this watch became a constant companion for many years. Lennox Island First Nation is a Mi’kmaq Community located in Malpeque Bay off the northwest coast of PEI.

Always looking to see the big picture this has come just when I needed it. What plagues my memory has after 3 (of course) years started plaguing me in many other ways. I have no problem saying I have Epilepsy, I’ll tell the story of how that came to be but I have yet to accept and understand it. Impatient with my lack of progress my  body started forcing the issue on its own about 2 months ago with the return of seizures in the form of Simple Partial. 3 (ha!) days ago (I really do NOT mindfully plan this stuff) I have (wait for it) 3 Simple partial seizures in 12 hours.

I wish I would have written down just how much I messed up a sentence (spoken) yesterday. When I was asked to repeat it and I “heard” what I said I decided to laugh instead of cry for how scrambled my brain is right now.

This picture has the least amount of items and carries some of the largest meaning

This picture has the least amount of items and carries some of the largest meaning. (L-R) I helped to design the Pin to represent the Hubbards Area Lions Club Cenotaph in 1985. A simple “P” pin from my Grandparents when I was quite young, ticket stucb for Van Morrison concert 1998, a pay stub from the late 1980’s and the key to my first ever car, a 1987 Toyota Tercel.

My creative process however remains a near mystery to me. This started out as me taking 1 picture to post on twitter. The creative process is intrinsic to who I am and through it I heal, I grow, I change when change is called for. Not always easily, mind you. Rarely in fact.

Granddad Treasures

My Grandfather’s Treasures (l-r) Sears, Lions, Legion, Lions and Navy.

The simple box contained a treasure trove of memories that span decades. The far back reach of that span is what makes this discovery particularly appreciated right now. Many of these objects take me back to a time before I was married. After 23 years of marriage you get a wide view of things. Marriage is not easy and rarely properly prepared for. With so much of my 46 years wrapped up in this union (been together 27 of the past 30 years) and with so many of my memories lost or maybe just missing, I don’t have a lot of me any more. And when I go back that far to find me? That kid was diagnosed as Manic Depressive by the time she was 15. She was in a lot of trouble, very little of it by her intended guidance and mostly just a fight to survive moment to moment.

Earrings

An eclectic collection of earrings – I yelled out loud with joy seeing some of them.

Touching, seeing, smelling, these pieces of my history is like a belated birthday gift from someone who you thought forgot – but it was just lost in the mail. It’s allowing me to colour in shaded pieces of my past that have been greyed out for a while now. Gifts from the past that have become gifts once again. Their meaning and personal wealth, doubled. They aren’t worth anything monetarily which makes them priceless to me. The attachment strictly emotional and if physically lost now tucked away safely in my heart and soul forever.

Brooches

I sat back and looked at this assortment and all I could think was wow. Apartment keys, Grandmother’s brooches, the elastic bands to my braces for my teeth!! Guitar pick, bracelets, lost marbles 😉 Key chains. What a gift this rediscovery this has been.