I have adopted accounts on nearly every social media venue. Am I active on them all? No. As a general rule of thumb, you can find me on every social media venue at @ipiluni. Here’s some links:
Patreon This is my Patreon. I am really just starting out, and I will be posting about many different aspects of my life. Mainly writing, art and film, but there will be crafts too. If you become a patron you will get a shout out on every social media venue you would like. So please consider helping a girl out!
Twitter This is the account I am most active in. I spend a lot of time chatting with the #ActuallyAutistic community. I like to engage them, answer their questions, and ask questions of my own. I engage in the Native communities, the writing community and especially the acting community.
Instagram I try really hard to participate on this account at least a few times a week – and more often when I am on set or going to an event. If I am quiet, it is usually because I have been writing – and a girl can only post so many pictures of her computer! If you would like, you can follow my service dog Lumos HERE.
Facebook This is my “like” page. A lot of what gets posted here is cross posted from other venues – including this blog. I do try and answer any questions, and I like to be engaging there. If you want to chat, that is a good place to do so.
IMDb This isn’t so much a social media venue as a record of what have I been up to. Here is where you can find all the projects I am working on. If you have IMDb Pro, you can check out my resume and such there. If not you can see a demi-version of my resume HERE.
Pinterest I spend a lot of time on here. For me, it is an autistic rabbit hole. I get “going” on something I am researching, and I never get out. It is also where I go when I am trying to avoid feeling overwhelmed or I’m running from a meltdown.
Tumblr This is another one of those rabbit holes. I can spend hours reading about Disneyland, Neil Gaiman and Films. I cross post often on here, but I rarely post directly to it.
I am on SnapChat and TikTok at @ipiluni. I rarely post on these two, but I do like lurking about. Go ahead follow me, and I may follow you back (no promises).
I think this is common among autistic people, so I wanted to share. Perhaps it will be relatable. Maybe you can see a bit of yourself in this, if you are #ActuallyAutistic. If you are not, perhaps you can see some of what I am expressing in the lives of your autistic friends.
I worry that my friendships today work a lot like friendships back did back in grade/high school. I consider a very small select few my friends, and I am loyal AF to anyone I consider a friend. I have beenthat way my whole life. I love each one of them and would literally do anything for them. I am always honored and proud to be their friend, and I want them to be part of my life.
But, when I look back at some of my relationships, I realize that perhaps using the word “friendship” was a miscalculation on my part. I see a clear lack of me in their life on social media, or in their personal commitments. It makes me think perhaps I am really on the outside, looking in at my relationships with these people.
I do what any loyal friend would do. I consider my own faults, and my accountability for why this friendship isn’t what I thought it was. I figure it is most likely because I am a bit much, or a bit odd, or a bit different than a typical friend. Perhaps it is because I am so open about being autistic. From what I understand, that makes some people uncomfortable.
I wonder where to draw lines. I really don’t know. I am horrible at figuring out social norms. I’d ask for help, but I don’t know who I trust with my vulnerability. So, what’s a girl to do?
I am not saying all my friendships are this way. Just a majority of them. When I consider my relationships, I always factor in the realities of “life.” I am not selfishly asking to be the center of anyone’s world. I don’t make any of my friends the center of mine. What I’m looking for is a clear sign that I have value to these people, and I’m not finding it.
I thought I would share a brief look at my autistic story. Some of you know it, or parts of it – and most of you don’t. I am hoping maybe my story will inspire others to embrace their true-selves going into a new decade.
I was diagnosed as autistic ten years ago this week. At the time, I was a student at the University of Washington. I had failed my classes for a quarter, and my advisor sent me to be tested for a possible learning disability so I could get help if needed. I was quite surprised when the diagnosis came back autism spectrum disorder (ASD). The school was amazingly helpful and provided the accommodations needed to succeed at a college level. School wasn’t easy after my diagnosis – but were the accommodations not in place, I do not think I would have graduated. The Disability Services Office, my professors and my advisors were the only people that knew of my diagnosis. I was not ready to tell anyone else. I graduated in 2014 with a degrees in American Indian Studies and Dance.
At the time, I was also a single mother of four. My ableist brain was scared that if anyone found out about my diagnosis, I would lose my kids. So I kept it from everyone. It was my secret identity, but I couldn’t figure out if I was the villain or the hero. I did the only thing I knew I could do – I started researching autism, and especially adult autism and late diagnosis information. My goal was to be completely informed before “coming out” to the world. I wanted to be able to answer questions without the worry of being right or wrong.
The more I researched, the more I realized my kids – much like me – had many autistic traits. Each of them presented in different ways. Two of them, I was certain, were on the spectrum. The other two were a bit more “grounded” than their siblings – they just had a uniqueness about them that made them stand out a bit. I was determined to not let them be affraid of their traits, or weirdness. Processing things differently and thinking out side the box are not bad things. I encouraged them to all find who they were.
Giving myself that permission was not as easy. I have decades of being told to “act normal” and “quit being weird.” It took me five years to be comfortable enough to tell anyone about my autism. I would usually just say, “I could have Aspergers” or “I know I am weird but there is a reason.” I was never comfortable saying “I am autistic.” And I was miserable.
Everything I was learning about autism was not bad. In retrospect, my life started making so much sense. I was baffled at why my ableist brain fought so hard against my “finally happy to belong” heart. I was still concerned with what others would think, so I kept the masks on. I continued to accommodate those around me, instead of fulfilling my needs. Constantly, I was torn between who they expected me to be and who I really was. I was reaching a breaking point.
Three years ago this month, my life changed drastically. I was at a breaking point and I had to put my foot down. I was mentally and emotionally exhausted. I needed to to do something to take care of myself. All my choices in my life up to that point had been for the benefit of someone else. With my kids, my parents, and all my relationships, I always strived to make other people comfortable, happy and safe at the expense of myself. I couldn’t do it anymore.
One of my biggest dreams in life was to be an actor. My life was at a tipping point, so I decided to follow my heart and give my dreams a chance. I got my kids set up in a safe environment with their father, sold everything I had, packed up a suitcase and my dog and moved to Los Angeles. The only demand I made of myself was that when I landed in L.A., I was to be 100%, unapologetically myself. It took me about a year to peel away the decades of masks I had been accustomed to wearing. I worked on being comfortable saying “I am autistic.” For the first time in my life, I was me and it felt amazing. Scary and awkward, but oh so amazing.
Being autistic isn’t a bad thing. It has taken me ten years to say that. And I still struggle with it. Society tries to tell me I can communicate, work and thrive, and therefore that my autism isn’t real or worth their effort. But what they don’t see, hear or feel is the inner fight I face everyday, so they can say that to me. I would love a world where my autism is accepted just as much as “the five year old non-verbal boy.” I would love to be able to say I am autistic without justifying any part of it. Autism is a huge part who I am. I have finally accepted that… with help.
In 2018 I met my husband. He has been a huge catalyst in helping me explore who “the real Evan” is. His embracing me fully with no expectations has taught me to do the same for myself. I stopped expecting my life to be a certain way, and embraced the amazing adventure that it is. The masks are still there, but only for fleeting moments. They tend to go up when I am trying to protect myself from some unknown. But, isn’t that what life is about? Heading out into the unknown on an adventure, ready to take on whatever obstacles come your way. I am ready.
