Sunday, March 3, 2019

I am 22 years old and from California.

My name is Chloe Estelle

 I am a founder of OurTism- a nonprofit that helps those with asperger profiles. In the same building is the friendship foundation that helps those with autism and down syndrome profiles. We send clients back and forth so that everyone feels like they have a place to go. I never want to send anyone away without helping them. I wanted to create a place where those on the spectrum felt safe and in control. I remembering being shut down so much so that I stopped talking. I felt like my voice didn’t matter. I could scream “no, I don’t want to do that” but would be forced into it anyways. So I created a place where the person with the disability gets to decide what they want to focus on- not the parent or caregiver or counselor. I do workshops, host a live stream, write a blog, mentor, speaking engagements, and jump head first into any project that will help autism and disabilities. I am loving life right now. 

My biggest accomplishment is:That I have decided to try something even if it is scary, I do it anyways. When I was in high school I was asked to film my twin sister’s musical and make their DVDs. The company lost the personal who normally did it for them a week before the show. I was overwhelmed from the idea and tried to turn them down. They pushed me to do it since they did not have anyone else. I ended up creating the DVD for them and found that I could do it. So I kept saying yes to future opportunities and found I had been putting boundaries on myself that didn’t need to be there. I have given a workshop, guest appeared on a podcast, modeled in photo shoots, I’m on the cover os someone’s book, and now I probably need to learn to say no.

I wish those who are not autistic knew:
That we are always trying our best. I am not sure why the world judges someone for having a hard time as lazy but that label gets thrown around too much. When I was in college and I talked about mental health days people seemed to get it. I wish I knew that term in elementary school, but I have this feeling if I told my teacher that I took a mental health day- they would say something along the lines of “What does a child need a mental health day for?” People don’t seem to get how hard it can be for those of us with disabilities. I’m trying to change that by starting a conversation and talking about my life and what I go through. 

I have so much advice beyond that. I don’t even know where to begin. I have built a career around answering this question. I think just knowing that those of us with asperger’s/autism are always trying our best is where we start. If you approach someone assuming they are trying as hard as they can, you’ll get a better result every time.

To those who are also autistic: 
Take care of yourself. Stop listening to those around you who don’t get it. Your body will tell you what it needs. Listen to it. Do what makes you comfortable, safe, and happy. Do what works. I know it sounds so simple, but the world puts these arbitrary rules on you. It’s easy to see through the bullshit, but it’s hard to act on it. Do it. Call people out. 

I wear one color. It makes me happy. It’s that simple. People have given me shit for it. I don’t see how it effects them, but It’s happened. It bothers me more to wear another color than to be given shit once in a blue moon. So I do what makes me happy. The people who disapprove, I don’t want them in my life anyway. For the most part when explain that the color makes me happy, I change peoples minds about what someone’s closet can look like. I get it’s small, but getting the world be comfortable with someone wearing only one color means that we can change things. Let’s start questioning everything. Start creating a world that everyone can feel safe in. 

Resources that benefited me: 
I had a teacher in middle school for three years who taught 6 of us how to take our learning disabilities and turn them into an advantage instead of a deficit. He taught us how to learn. Beyond that he taught me so much about life and about being excited about every moment. He understood us and created a family. He brought trust back into my life. Sadly, the program he runs is gone. He created a room where we all felt safe and that we belonged. It is pretty rare to find a space like that for those of us on the spectrum. I found myself in that room all the time. If I needed a mental health day and my parents were fighting for me to stay at school- I was in that room, curled up with a book or on the computer or sleeping.

Signs/symptoms that indicated I was autisitc
None, I mean looking back- I was selectively mute and I didn’t know how to communicate. I could not transition. I has sensory overloads all the time. No one seemed to put two and two together, probably because of my gender. My twin sister was going to be tested and she wanted me to test with her. She had done so much research on the subject and was convinced I was on the spectrum. I trusted her and am very protective of her. So, I did the test to support her. At 16 years old I was diagnosed with autism. Before that I was misdiagnosed with ADD and OCD when I was 13.

When I was first diagnosed: It was hard to adjust to a new label. I know getting the ADD diagnosis was a relief because it gave a reason to why I struggled and made everything make more sense. So with the autism diagnosis, it just put everything into place much more clearly. 

Today I feel about my diagonsis is 
autism is part of who I am. Its like saying I have brown hair. It isn’t bad or good. It just is. I love who I am. 

 I feel that when I was younger that the support was… horrible. There were boys in my class that just looked so beat down when they had to go to different support classes. Today things are much better. I just feel I would have retreated into myself and shut down. I see parents come into my work who just had a young child diagnosed and are mourning over the loss of a child they never had. They are fear mongered into doing so much therapy they don’t need to do. For me the last diagnosis was a relief and I was older and listened to when I said I didn’t want to take part in a certain therapy. It was hard for sure being told that I just needed to try harder when I was trying my absolute best. I just don’t think having a diagnosis would have changed that situation. Autism has both negative and positives in my life. I try to focus on the positives. I see so many diagnosed at an early age who have associated autism with only the negative aspects of their life. I think our experiences make us who we are and I love who I am.

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