My World Isn’t Everyone’s

I sometimes forget that my world isn’t everyone’s. I was on a road trip. The radio was blasting. The air conditioning was blasting. The car was rumbling. The freeway was buzzing. The people were chatting. My body found the sensory sensation too painful and in order to protect me, put me to sleep. I woke up to a sensory overload. The pain was horrible. I was a crying mess. My Da and sister asked what they could do to help. They pulled the car over and my Da sat with me on the side of the road as I pulled myself together. He let me know I was going to be okay and that everyone was here for me. When I was ready, I got back in the car and we pulled up to the hotel. I curled up under my weighted blanket, with my service dog doing pressure. I waited out the sensory overload.

While this was all happening, my Da’s friend watched from the outside. He asked my Da what does he do when that happens? My Da answered with exactly what we did.

My Da has not always been that amazing with my meltdowns. I am grateful that now he is my rock and he can help me through those very painful moments. Having someone who understands and can explain when I can’t has been so lovely. My Da was patient with me when I couldn’t verbally tell him what I needed. From experience of past meltdowns, he was able to figure out how to help.

I want to share these stories because autism doesn’t go away as an adult. I have gotten better at knowing my body and taking care of myself before a meltdown happens. It isn’t always possible to stop meltdowns. They are painful and embarrassing, but they are part of my life. I forget from the outside how alien my life can look. So, here I am sharing another story to normalize and bring understanding to the word of autism.

Autism & Authentic Representation On Television

Ground breaking show, Freeform’s Everything’s Gonna Be Okay, casts three autistic actors as autistic characters. Kayla Cromer (not pictured) is the first female autistic actor to portray a female autistic lead in a television series. Joining her will be reoccurring co stars Lillian Carrier as Drea and Carsen Warner as Jeremy. Included throughout the series are autistic background actors authentically cast as autistic characters. Lillian Carrier consulted throughout the production of the show in order to accurately represent the autism community. Everything’s Gonna Be Okay premieres on Hulu and Freeform Thursday, January 16th.

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My Diagnosis

Ever been to middle school, a school filled with people between the ages of 11 and 13? Everyone is growing up, but receiving more and more restrictions because their parents are scared of things such as pregnancy and drugs and death. I don’t know why we look at 11 years olds as getting into some kind of trouble that could cause way more horrendous consequences than that of a 10 year old. On top of that there is puberty. That’s a fun thing, hormones racing through your body that make you insane. People start socializing in ways others aren’t ready for. Topics get more mature and in a way we get more immature. School takes on a level of intensity that no one can prepare for. It’s just a whirlwind of a time. On top of all of this insanity that everyone is experiencing- I had autism. I also had no idea that I had autism.

I didn’t have trouble making friends. Well, maybe I did- but I had friends. I didn’t feel friendship was an issue. I had two really close friends in middle school. I had one and a spare, so I was on top of the world when it came to friends. It was my grades that put a damper on my life, at least at first. I would study for hours. I spend so much time working on projects. I didn’t understand how anyone had time for extra curricular when I would get home and immediately start my homework and barely made a dent by bedtime. I would then be exhausted in class and unable to pay attention even though I was staring directly at the teacher trying my hardest. I would miss when it was time to hand in work and not turn in assignments that I actually did complete. I began to fail out of school.

My parents got me tutors. I met with councilors. I had meeting after meeting to figure out what was going on. I was pulled out of class to see the school therapist. In other words, I was failing school so I was pulled out of class to be asked why I was doing poor in classes that I wasn’t attending. I do remember being pulled from Spanish class, that was helpful.

My birthday came around. Finally a day that I didn’t have to cry or stress out about school. Finally break from all the stress. Not one person showed up. My friends all had other plans. Not knowing what else to do, I switched schools. This school was set up the way I learned. My grades drastically improved. Although socially, I remained stagnate.

This school did an amazing job teaching me how to learn. So I turned things around and decided that I wanted to go back to public school because they had a film program. In order to continue with accommodations the way this private school was allowing, I needed a diagnosis. I was told by a therapist at one point that I had ADD, but I never had it confirmed. My twin sister was in the process of being diagnosed and wanted me there for support. So I joined in.

Did I mention that I hate tests? Well I do. They are meant to trick you. It doesn’t show what you know. You have to sit in such a stressful environment for so long. Do you know how they diagnose autism? A test. A test that takes a few days. I don’t even remember how long it was, but I remember putting my head down on the desk willing it to be over. So I received the diagnosis “autism.” Funny thing was, they never explained to us what autism actually was.

My mom kept telling me, this will only help us understand you. There is nothing wrong with you. I don’t know, it felt like some bullshit way of comforting me that I didn’t ask for. I was just happy to go do my film class. I knew whatever we were doing at my old school worked and wanted to continue doing that. My parents seemed to get much too excited about all these autism programs they are supposed to help me. So, I was forced into ABA for a year. Which sucked so bad!

My mom kept telling me “I wish you had been diagnosed earlier so we could have helped you more.” No, I was glad I wasn’t diagnosed until later. Since the diagnoses, I was told all of these things that I can’t do and that I needed help with. I never heard any of that before autism came into the picture. Suddenly I was treated like I was broken even though everyone told me that I wasn’t. I would not have been happy growing up being treated like that. I was 16 when I was diagnosed and capable of saying no. I couldn’t imagine how I would feel being a young child without the capability of fighting back or defending myself. It took my mom a long time to come around and see what I was seeing.

She first realized that I understood myself better than the so called experts who treated me like I was incapable of making decisions for myself. It took her until I was 18 to really start listening to me, but she did and I am so grateful for that. It took until I was 21 for her to stop saying, “I wish we knew earlier” because no, I don’t wish that at all. The way the world treats those of us with autism is a huge problem. Without having that label on me, I was able to decide for myself what autism means to me. Don’t get me wrong, I love having autism. What I don’t like is the way the rest of the world treats those of us with autism.

My dad on the other hand struggled with accepting the diagnosis for a long time. He eventually came around. I had the ADD label for a few years before receiving the autism one- it was just replacing one with the other that took a while for me. I was just glad there was some sort of answer to why things were harder for me and that now we could do something about it. I hoped that in having the diagnosis, I would be listened to more. It didn’t actually go that way. I felt heard less. We need to remember that the person living with autism will always know more than those standing on the outside observing.

Stay A Sprinkle

Stay A Sprinkle: High School Speech (2015)

Written by Lillian Carrier

Being an outcast is something most people fear. I have never had an issue with it. My mind has always put the strange and weird into a category of great things. I feel complimented when people call me weird. This may seem strange to most people, but take for instance the term “Normal”. I don’t think anyone wants to be called “Normal”, or any synonymous word like typical or average. No. I think everyone, even if it’s buried deep inside, wants to be different. Something that makes them special and gets them noticed in a crowd. Like the girl who always wears a crazy hat, or the boy who loves big-wheeled trucks.

Being weird has always come naturally to me. I was born with an identical twin sister, and my whole life I have been trying to find ways to be different from her.

My parents raised me on the belief that my differences were a gift rather than a quality I should hide. I mean if you have ever met my family you would know we don’t fit into a perfect box. I have a dad who never runs out of energy and leapfrogs from one activity to the next. I have a mom who needs order in a house that has none. I have a cousin who would rather study in his dorm than go out partying with a group of girls. And a grandfather who once tried to get out of doing chores by pretending his arm was broken.

In elementary school, no one cared what people wore or if you didn’t like the same things. Our little minds accepted everyone and didn’t see weird as bad, but something new to learn about. The kid who brought in a rock collection for show and tell wasn’t called a nerd but an explorer. The kid who wore hand me downs and had used school supplies wasn’t thought of as poor, but as the kid with a treasure trove of stories about their stuff. The kid in the wheelchair wasn’t thought of as sick, or helpless but as a kid who was part machine and gave others rides to class. And then we grew into middle schoolers and weird was no longer cool but shameful.

I started sixth grade with three friends. They were weird and fun and didn’t care what people thought of them. As a group we hung out in front of the math classrooms. The first week of school I met this girl in my PE class, she didn’t talk to me. She just nodded yes or no when I asked her questions. I later found her sitting by herself at snack time. I invited her to sit with me and my friends that day. She then sat with us for the rest of the week not saying a word. The girl who didn’t talk became part of our group and we accepted it. Then one day as we were joking around the girl tapped me on my shoulder and whispered in my ear. She asked me if we were friends. I nodded in response and her eyes lit up and she smiled. I would later find out that the silent girl’s name was Rayna and she had never had a friend before. I was her first friend in the world. She was weird yes. But just because someone doesn’t talk, that makes her someone no one wanted be friends with.

Our circle grew as kids began learning that the kids who hung out by the math rooms were weird. We were a safe zone for weird kids. The silent girl by the end of year was now joining in on the conversations with inside jokes and amazing opinion. She was no longer the silent girl, but she will always be part of our weird circle.

Coming here to my new school, meeting all the kids in my grade. I immediately felt at home. The weird was overflowing out the classroom windows. I want to remind everyone: Weird isn’t bad. Weird shouldn’t be feared, but embraced. I will finish off with a quote my friends and I would say to each other in elementary school that I still say today: “Weird people are the rainbow sprinkles on top of the vanilla ice cream. So stay a sprinkle.”

The Land of Fear and What Ifs

The Land of Fear and What Ifs

Co Authored by Chloe Estelle and Gail Carrier

So, first day of school. We all remember that right? The importance of that first impression, leading to picking out the first day outfit. All the effort going into what things could possible go wrong. What if I walk into the wrong classroom? What if I sit with the wrong people? What if I forget my pencil? What if I get lost? What if I say the wrong thing? What if, What If, What If. You can go wallow in What If land forever, the land of fear and everything that could go wrong. What good does that do? You can’t possibly prepare for every disaster that might spring up. And what really is so bad if you end up in the wrong classroom? Is that really the end of the world? Look back on the last first day you have had; how much do you remember of what anyone else did that day?

As a child there were countless times where my parents acted out of this land of what ifs. I was punished for something that I may do in the future. I couldn’t spend so much time on the computer because I may end up wasting my life behind this screen and not end up getting a job. You know, because middle school me who didn’t have friends to hang out with would end up a deadbeat for pretending to be an elven warrior online too often or raising a virtual animal. Oh, I shouldn’t wear suspenders because I might be bullied by my peers. Also, I probably should get home before dark because statistically speaking murders and rapists only come out at night, like vampires.

Now, hold up- Chloe, people do get bullied and murdered and rape. These aren’t irrational fears. These are cold hard facts. Sure it could happen. There are so many things that could happen. I could also win the lottery. I could also go on my first audition and become a star on a television show. So many things could happen. Do we have to prepare for every single one? I mean, sure if that was possible. It’s just not. It is a waste of energy and not only that but a hurtful waste of energy to be sending out to another person. It’s okay to be scared, but remember that it distorts your reality and acting upon that fear will never have a good reaction.

Hey, Chloe’s mom here! Yes I did those things, but in my defense- the experts were all telling me that was what I was supposed to do. Was it working? No! And yet, I kept trying over and over again- until I finally stepped back and saw: this wasn’t working. Now what? I soon came to the realization that I was parenting out of fear- my fears. I parented under the cover of wanting to protect my baby from all the bad things that could possibly go wrong. Of course, my fears never actually came to pass. All I did was end up putting my anxiety onto my daughter. She felt the opposite of what I intended. With lots of work, I began to look at each situation as it was instead of what it might be.

Parents of those on the spectrum have this fear to a more extreme. Seriously, sometimes you all act like it’s the end of the world when I am just having trouble with transitioning out the door today. We all have bad days. No need to jump to the worst possible conclusion. I’m not going to become sickly because I like to eat the same meal everyday. I am not going to live a life of solidarity because I need to stimm by flapping my hands in public. Not just parents, teachers do this to. Have you ever heard of that rule that only one student at a time can go to the bathroom because you know what might happen? The entire class could just up and leave and wander the school when they claim they are going to the bathroom. I have never heard of such an irrational conclusion to come to, yet so many teachers have this rule to prevent mass chaos.

We as parents have so much noise in our heads from friends, experts, teachers, school officials telling us that we are bad parents. You have to get your child to school more, off the computer/TV, exercise more, eat better, etc. When I finally said: shut the fuck up and listened to my heart, I knew what to do. Listen to your child. She was telling me what she needed. I just wasn’t hearing her. Be in the present by teaching to to what is in front of you, not what might be. Most of all accept and love your child for who she is because she is amazing.