Autistic Josey & The Healthcare System of Possible Doom

My body is a mess. It’s my mess though, and I’m working to organize that mess into a slightly more organized chaos. It’s not an easy process.

I was pretty healthy growing up. At least it seemed so for the most part. I had issues communicating what was going on in my body and thought maybe I was being dramatic or exaggerating what was actually going on. Whenever a puzzle piece is put down and finds its place when it comes to my body, the memories flow in. I didn’t know I had asthma for years, and when the diagnosis came I suddenly remembered asthma attacks in gym class. When I was diagnosed with panic attacks, I realized that rib crushing feeling and impending doom had a name and triggers. Hell, I spent almost two decades of my life not actually knowing I was autistic. Now that I’m in my mid-thirties, it’s unraveling every mystery brewing underneath my skin. Oh, and also on top…thanks eczema! I realized I didn’t have to hide the things I though I was just being “dramatic” about, I had a right to unlock my mysteries and have access to do so. I had to find answers for what many thought I was just making up excuses for.

People often ask why I didn’t do things sooner or know sooner. That you can thank the American healthcare system. My father was in the navy so growing up I had some basic health insurance. When my parents split and my dad got sick, money got tight so extra expenses for medical care just weren’t in the budget, not even a copay or prescriptions. On and off after I turned 18 I had some basic insurance until I was 23. Each time I started a new insurance, it was like starting over at the very beginning. Each insurance company had to do their own referrals, cross off every x and dot every i. It took time, it took patience. After 23, I was screwed trying to keep insurance, especially with preexisting conditions like (then known as) Aspergers or a worsening back injury & degenerative disc disease. It wasn’t until “Obamacare” that I finally got insurance I had good enough coverage on, and I wasn’t piling up emergency room and clinic bills. Before finally getting stable healthcare, I had accumulated thousands of dollars in medical bills. Not having a regular doctor meant I didn’t get regular treatment. Emergency clinics want to get you in and out so they do whatever is quickest. Everytime you go, it’s like starting over again. Some meds, a few suggestions to what it may be and a lot of paperwork. Stable, steady healthcare is a necessity for all human beings. For those who have prexisting conditions and those who just need preventative care. Who knows where I could be healthwise If I had access to something like the Affordable Healthcare Act sooner. Yes, There are very just complaints about Obamacare. I will admit I’m one of the lucky ones whose life it saved without further impacting my already fragile and irregular income. I count my blessings though, because who knows where I would be now without it.

Over the last five years, it’s been a slow, but rewarding process. I moved midway through the process from Orange to Los Angeles county which set me back a bit, but I’m understanding my body, what’s going on, and getting help where I need it. I had back surgery on one of my damaged discs, and we were able to identify just what is going on with my damaged ankle – a cartilage fracture, loose tendons & arthritis. I was just finally fitted for AFO’s to help give my ankle stability, but surgery is on the horizon…when my insurance decides to stop sending me through the ringer. It’s also not always easy dealing with social limitations either, one panic attack can force me to cancel an appointment and then go back into waiting for an appointment. Some doctors understand, and some don’t get it at all. Some surprise me with their knowledge of the complexities of autism and some shock me with their complete ignorance and outdated information. There’s been times where other issues with my body have forced me to miss appointments with one doctor to rush into another. It’s a lot of referrals, a lot of waiting, a lot of patience, but I’m grateful I have the chance to at least begin poking at the surface of the issues I’m not very familiar with yet. A chapter with many sagas that currently includes the yet to be diagnosed saga currently being played out in my uterus. A saga which currently is currently waiting for an endocrinologist referral. Patience isn’t one of my strong points, but I’ve learned to harness it when it comes to anything regarding my healthcare.

Like I said, there are annoying points in the referral system too. My ankle specialist knows I need surgery, but the insurance is making me do everything else “just in case”, because they will take any cheaper route than paying a surgeon, even if its non-invasive surgery that means I wont have to keep seeing so many doctors. I had one back surgery, but because I switched insurances when I moved (I tried to remain on my old insurance but couldn’t because of county lines) I am starting completely over with my back, even though we know exactly what’s going on. I have to restart physical therapy, all the scans, poking and prodding. This includes painful epidurals that don’t work for me but the insurance has to clear it. But I endure it because I’ve been on the side with nothing at all. I waited almost a decade for basic answers, to begin my journey with healing. It’s why I ask my doctors “too many” questions and argue when they make assumptions. (ie: the time my primary care doctor tried to say I needed to not shave with dull razors because my eczema was flaring. I rarely shave my legs. I showed her how hairy my legs were, stood my ground, and got the treatment I desperately needed and that flare up was better in two days.)

I will continue to share my health journey because I’ve been on the other side too. I also recognize that being mostly white, and definitely white passing, I receive more help healthcare wise than my POC peers. I am fortunate enough to have what I have now so I won’t go back to my previous distress when help is available for me. Who knows how long it will last either. I could lose my insurance at anytime, so getting answers now is crucial. Plus, Maybe my honesty and openness and can help someone, even just one person. Maybe my continued fight will help someone find the hope to continue their own. Maybe when I go into PT multiple times a week, even when I’m overwhelmed and non-verbal, it can help someone else get into overwhelming appointments. I am loud about my struggles because for too long it was silent when I struggled and needed answers. If sharing one thing I went through can help someone, none of it is ever in vain. Hell, I’ve even considered being in medical test studies not for the money, but to help others get answers…but the anxiety issues & mysophobia are block me there but who knows? Being in therapy, maybe that can be conquered too. Maybe those questions can be answered as well. For now, I’m just a student and my own body is the professor trying to educate me and I’ve got a LOT of homework to do.

I don’t need no help, I can sabotage me by myself.

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It was almost two decades ago when I lost myself. I had been trying for years in my youth just to be another face in the crowd, I didn’t want to draw attention to myself, I didn’t want to be seen or heard I just wanted to live my life and exist and have others accept me. One of the first people to accept me for who I was, the one who peeled back layers – I lost. Sara and I would sit in the back of church group talking about hot girls and she would be open about being bipolar with no judgement from me. I didn’t even know I was autistic then, but hearing her speak so honestly made me realize I was wired different too. In 2003, her body was found at the bottom of a cliff and when she was gone I let her take so much of myself with her. I had so much guilt because I let my own mental health get in the way of our friendship and we weren’t as close as our back of the church days. I hid so many truths and was oblivious to others. I knew that I was autistic but didn’t know what it meant. I had no idea what the anxiety and agoraphobia I was yet to be diagnosed with formally were controlling my life just as much as my abusive ex at the time was. I was so embarrassed about being autistic (when finally diagnosed) that I just refused to tell people I was autistic at all. I had completely lost grasp of who I was and was letting others pull me along to fit their needs.

Our story truly starts though about 11 years ago, when I met Crystal online. Crystal was patient, and kind, and also had her own struggles with mental illness. She GOT wanting to just hang out inside, that we didn’t have to go out to have a good time. Whilst many of my peers found the definition of a good time in bars and parties, I was fine to sit and watch movies or play board games. Crystal understood. She didn’t need to be a social butterfly and neither did I. I hated talking on the phone (still do), yet with Crystal I could talk for hours. With Crystal, I didn’t have to feel like someone I wasn’t. It was Crystal who introduced me to Paramore, and nothing would ever be the same again. My ex was so controlling he bullied me into listening to only music he liked. Even alone I was heavy with guilt that I would upset him by listening to something he didn’t like when he wasn’t even around. Paramore became my little secret, when he wasn’t around I found the courage to listen to them and they lit a fire within me. I began to stand up for myself. I began to take control. Little tiny steps, from enjoying my own things to going on tiny adventures with my boys. My neighbors judged me because my closest friends were states away and I didn’t want to socialize with them or let their toddler bully mine. Their constant judgement triggered my agoraphobia to the point it became difficult to leave the house, but in my home I was building control and finding an escape with the support of Crystal, who despite me and all my issues, stayed by my side and kept pumping music into my ears that became my anthems.

I still struggled though, God did I struggle. One night I was heading into work up in Washington state, driving along the water’s edge I was going to commit to a plan that had been floating in my mind, poking at me, egging me on. I was going to drive off the road and kill myself to finally be free of every heavy thing holding me down. I knew the exact spot I was going to let go. Crushcrushcrush came on and it snapped me into a reality that I desperately needed. I don’t know why that song of all songs hit me so hard, perhaps it was the conviction in Hayley’s voice, or the music tat echoed through my body when they played. I turned the wheel back and my coordinates right, I went to work and cried in the parking lot making myself late for my shift. The world was falling apart around me further and I wondered if I should have just let the urge take me. I still don’t know to this day why that of all songs saved me, but it did. The months that followed turned into hell, the abuse got worse until I ended up in jail for defending myself, and new nightmares began. I was homeless, I had lost everything including my two young boys and had no where to go. When a friend took me in three states away the abuse continued. I wasn’t allowed any of her food, I had to clean and I wasn’t allowed to hang out with them at night until I “had a job”, they had no understanding of what I was going through, who I was, what anxiety was on any level. I was made fun of constantly for being weird, or annoying. They called me retarded and made fun of the way I dressed despite the fact that I had only a handful of clothes to my name. I had nothing BUT Paramore, a handful of songs saved on a broken phone were my solace. Eventually I met Jackie, my wife, and my world changed. I had missed my first chance to see Paramore because my concert happened the day I was in court and I was so desperate for money I had to sell my ticket to a friend. I had become another cog in the wheel, just trying to hold a job and exist. Jackie and I grew closer and closer, sharing a love of Paramore and her understanding that sometimes adventure for me had to be in the comfort of our own home.

I belittled myself constantly because I wasn’t normal enough. Unmedicated I drifted through life being angry at everything I didn’t have answers for. My father had long since died and my mother and I’s relationship wasn’t at it’s greatest then. I didn’t have her support in the ways I needed it. All I had was Jackie and even then she didn’t really get me then because I had locked so much of myself away. I didn’t want to burden anyone and was filled with such anger I just buried it and let it define me. I bullied people in my own life because it was all I knew how to do. I hurt myself mentally and physically. I bled myself raw. Sometimes belting Paramore lyrics was the only therapy I had, especially when I had no means to get actual mental health care.

The first Parahoy was a blur because despite going, I never felt safe, didn’t feel understood by my peers and was too afraid to be honest. When my thoughts tried to emerge they were often a chaotic explosion and didn’t help anything. I spent a lot of time hiding, a lot of times drowning in negativity and feeling hopeless. Things HAD to change. It wasn’t until a few years ago when the affordable care act allowed me to finally have health insurance that I got answers I needed, and finally was medicated for my anxiety. It wasn’t a fix all, but I had answers for why. My mental health issues aren’t gone either, even today I struggle with leaving my house and recently had to quit college because there weren’t anymore available online classes for me. I couldn’t even go to school, something that was ingrained in me since my formative years. I can’t go ANYWHERE by myself, my wife accompanies me to all doctor appointments, to target, even to the bathroom when I’m not at home. I’ve missed Paramore shows because my panic attacks are so painful that it feels like my rib cage is tightening around my lungs and my back spasms. I went from being called a flake to standing up for myself and say no, I can’t do this right now and this is why. I wasn’t completely in the dark anymore, so despite the pain and embarrassment, I knew what was going on was a part of who I was and things I couldn’t change, but assist in some way or another. I had the keys to my own safety and happiness in my own hands. I had answers and a tiny spark to get me where I needed to be.

The second Parahoy came full circle for me. I was able to bring Crystal, the very person who gifted me with Paramore on. I had my service dog, I had answers. Things still weren’t perfect because I let expectation pump up my reality and when things weren’t exactly as planned my meltdowns took over. I hid A LOT that cruise, missed performances, couldn’t even get myself to be in the game I had been chosen for…I was a mess. It was like I was letting the negativity of others or even my own completely consume me. Even medicated I was allowing the worst parts of mental illness to win because I had so many negative thoughts woven deeply in me. I worried everyone would stare at me, that I would be the focus and not the band because I was too weird or too ugly or drawing too much attention to myself. I had some great moments, don’t get me wrong, but I let the shadows pull me in. I had regrets because I didn’t allow myself to do anything I really wanted to.

After Laughter hit me like a ton of bricks. The lyrics swallowed me up and surrounded me. I had grown with the band, I had my pain and my sorrow and it was all neatly wrapped up in songs that I could digest as if they were made just for me. I didn’t have to be ANYTHING anyone wanted me to be, even if they didn’t get every layer of my mental illnesses or being autistic. There’s “bad” parts of me but they’re surrounded by good. It took me to the water’s edge years ago where I almost let go and reminded me to keep hanging on. I WAS worth it, even if so many negative forces wanted me to feel otherwise. I stopped letting people define me, and began to define myself.

Parahoy 3 was the turning point for me. First of all, it began on Sara’s birthday, April 6th. She blessed me with magic on her day and turned that little spark to fire. Be it demanding proper treatment and not standing down, to putting myself out there and telling my agoraphobia to fuck off. I never thought I’d see the day where I would move around a huge cruise of people in just a bikini or wander in a fishnet dress & boxer briefs. I never thought I’d see the day where I’d dress up every single night and singing louder than before. In me being out there, in me showing my skin and exposing my soul, people learn. The more awareness there is, the more people like me are not just accepted or appreciated. Over a decade of being a Paramore fan and Parahoy 3 was the first time I saw them that close because there was an ADA pit. People like me being open and honest about our needs without judgement is how other people get their chances too, Me putting myself out there begrudgingly on the first two cruises, and me opening up on social media helps other autistic folks feel safe in these sort of environments or lets other agoraphobic people know that it can happen for them too. Seeing Hayley, Zac and Taylor bounce back time and time again from the world of media and all it’s chaos, and be open and raw about their own struggles reminds me that I’m truly not alone. Their words and music surround me and help me see that even though I’m autistic, people can understand different layers of me at their own capacity. Putting myself out there this cruise allowed me to meet people I had been too shy to talk to and cement beautiful friendships that I’m eternally grateful for. It helped me strengthen existing relationships and see who would truly fight for me AND that I deserve it! I used to be so afraid of the parts of me that might draw attention, good or bad. I was afraid to be true in my gender identity, I would try to be effeminate to match what people wanted of me. This cruise I was in my own as a gender fluid person, and I FELT SAFE. Safe enough at least to not shave my pits and wear what I wanted regardless of gender constraints. Things that seem to simple, to wear what you want, to be who you truly are, are like wars for me. I battle with my mind and maybe I’ll end up breaking free. On Parahoy, I won the battles time and time again and found my steps to freedom. I still had my moments where I was sick with anxiety, but I didn’t make myself feel like shit about it either. In the past I would beat myself down with guilt for being a flake or not seeming strong enough, but on this cruise I realized the right people wouldn’t guilt me for these things. Me being open and honest about the good AND the bad aspects of mental illness helps the awareness that breeds appreciation. I’m not asking for pity, I’m asking for respect, for some understanding. I was sent into a meltdown because paperwork for Oberyn had been messed up before I was even on the ship itself but wheeling up the gangway. When the accessibility coordinator realized how stressful this was for me she proceeded to make sure I was at my absolute comfort and joy for the rest of the cruise. I’m not asking for free shit all the time, though it was lovely. Cholette understood that negative energy and things out of my control can ruin my entire trip and worked to remedy that. I didn’t expect any of it, but even just her notes of apology and genuine concern for my safety were gifts enough. I was shocked that someone got it, and three cruises in, Sixthman continued to prove they got it too. Paramore did so much for me just by doing this cruise, without even knowing it.

Paramore has helped me time and time again to realize the parts I’ve hid away so long don’t need to be hid. In letting my truths be set free I can help others understand themselves and people around them struggling in similar ways. I am both a half empty girl and a rose colored boi, I’m allowed to be optimistic and have my bad days too and not have to feel like a burden because of them. “Normal” people have a bad day and it’s excused but when you’re mentally ill and people see the aspects they ignorantly refused to see and it doesn’t fit well, we’re the assholes. But this last cruise made me realize that I’m not an asshole for how I am wired, and those who blame me for things out of my control are the true assholes. I’m still going to have those days where leaving the house seems like the end of the world, but there are also going to be days just like Parahoy 3 where I come out on top. Days that fuel me with the confidence to be unapologetically me. In truth, it wasn’t that Paramore saved me in all of this, but they showed me how to save myself. I’m still here, still kicking, and still have a lot of shows left in me to scream at the top of my lungs. Plus, theres still a lot of awareness needed out there and I’ve got to help see it grow and turn to appreciation.

Actually Autistic.

It took me what seemed like an eternity to embrace autism and everything that came with it. I pushed so much of it away, buried it in a funeral plot in my mind and hoped no one would see the freshly disturbed earth. I didn’t want to be autistic, despite the fact that it was so deeply interwoven in me and who I was. I was ignorant to my own behaviors in a desperate attempt to be normal. I had no idea that my autistic quirks were oftentimes my saving grace.

I wasn’t diagnosed as a child. I grew up that weird kid on the playground that had no “reason” to be the weird kid. It didn’t warrant me being picked on either way, but I also had no extra help that I needed. First they just thought I was hyper, then they thought it was just depression. Eventually, after high school I discovered part of who I really was. I was diagnosed with Asperger’s Syndrome after my psychologist put the pieces together. My then partner complained about me sucking on a blanket, no one understood why I rocked, why I would so DEEPLY fixate on things or why I seemed off socially. I never had much of a filter, certain types of humor escaped me, I walked on my toes what seemed randomly to others, but as a movement of excitement for myself. The pieces piled together and doors were opening for me, just as others were closing.

I struggled to be open about it because I didn’t truly understand it. Over a decade ago, my resources on the internet seemed limited, and back then places like Autism Speaks seemed like a trusted source of information. The more I connected to actually autistic voices, no matter how they choose to speak, the more I understood myself and realized how autism truly is a spectrum, and not even just from person to person but more so within the person themselves. Some voices aren’t as loud as mine, but it doesn’t mean they should be viewed lower than me because of their abilities, as we are all autistic. When Asperger’s was absorbed into the autism diagnosis, I struggled with who I was. I kept hearing “high functioning autistic” and at first took the label before being introduced on youtube to people who were labeled “low functioning” yet still told their stories and could be considered no different than me if people looked past the computer they were speaking through. Function is flexible, there are some days where I function better than others, this seems to be the same for most of my fellow autistic people but I don’t want to speak for all.

Autism is complex, but it isn’t a monster. For too long in my own life I saw it as a punishment or something I should be disappointed in, but it is not. It’s allowed me to observe people, to be open and honest with people, to love unconditionally, and so much more. Being open about who I am allows the stigmas that surround autism to begin their fall. I’m not the stereotype you may know, I’m not your “Rain Man” and the autistic children frequently portrayed in media become autistic adults, and I am one of them. Autistic adults lack many resources because we out grow them, and become to old for many of the systems provided. Autistic children are the common view of the autism community, because of groups like Autism Speaks. Autism speaks who puts sympathy with the parents and sees autistic child rearing as difficult without thinking of the perspective of autistic children or people in general. We live in a world that isn’t made for us and acts as if doing so is a chore or something that deserves a sob story. Accessibility is not something that people deserve a pat on the back for – it’s common sense. I deserve access to the same exact things you do in life – just as all disabled folks do. It shouldn’t have to be us pretending to be normal. I should be allowed to prance on my tiptoes on the good mobility days and rock safely in my wheelchair when my chronic pain is overwhelming and NOT be stared at because the ways I move my arms or legs. I shouldn’t be stared at when I’m out with my working service dog, nor should anyone police my use of my service dog. You shouldn’t stare because your narrow point of view thinks autistic people shouldn’t be covered in tattoos or have bright colored hair like me as if I wasn’t able to make these choices myself. I shouldn’t feel like a burden when I can’t do things traditionally.

An example from my own life being that time I worked at Ralph’s and was lowered in position because I couldn’t look people in the eye. Yes, because I couldn’t live up to a very ableist customer service rule, my manager decided to demote me by putting me on a night shift so I wouldn’t be able to interact with customers and make her customer service scores “look bad”. When I explained that I had Asperger’s (this was before its absorption in the DSM), she looked at me blank faced and said “I don’t know what that is”. She continued to lecture me as I cried and I was too poor to afford a lawyer and too overwhelmed and confused to even realize then what she was doing was discrimination. The situation still causes me pain and I’m forced to relieve it all time as I’m constantly fixated on what I didn’t do right in it. Somewhere Martha Brown probably still has a job, and I’ve struggled since then to keep jobs due to back injuries, mental health, and so much more. A complete lack of understanding from my managerial teams didn’t help either (Disneyland is a whole different disaster story, including how they made a fellow autistic worker stay back of house so he didn’t “bother people”) and working became a nightmare for me, combined with my ankle and back injuries, I became part of the disabled & unable to work part of America that is still very heavily looked down upon. Looked down upon because we don’t exist in your traditional boxes or nuclear family dreams, we don’t deserve anything. We don’t matter because we exist outside your societal norms, the norms whose foundations exist on ableism, exclusion, and ignorance. We don’t have to be held to your standards when you don’t bend to help us succeed in a world built against us. Many friends who said I could be open about who I was have disappeared because the actual presence of autism in their life didn’t reflect the minimal things they thought they knew. The more open and honest I was about all aspects of my life from sexuality to spectrum, the more they pulled away. However, in weeding out the people who only liked me when I pretended to be “normal” or adapted to what they wanted of me, I found the right people. I found neurotypical folks and people with other mental illnesses who existed on their own spectrums, people who gave as much as they took. These people saw my quirks not as my downfall but of my uplifting. I had words woven through me even on the days I could not verbalize, and a strong desire to share my existence with the world so they could understand my little sliver of the autism world. Those who have stayed to listen have showed me that I don’t have to adapt.

The world wants 100% from disabled folks when it only gives us a small percentage. We adapt to your schools, your rules, your socialization demands and other things you overlook because they may not be difficult for you. Yet we when ask for our own safe spaces we’re seen as a burden, as if we’re causing trouble or asking for too much. We’re asking to be valued as much as you are as a human being because surprise! we are human too! Access is something we all deserve, regardless of how we need it.

Next month is autism month, and it’s a month that’s been tainted by ableism and ignorance for many of us in the actually autistic community. Groups like Autism Speaks enforce the ideas that autistic people need to be “more normal” as if their view of existence is the only right way. This April, you can help actually autistic folks like me by listening to us. Not something you heard from your 3rd cousin, not from an experience you had with one autistic child in your daycare job, not something you saw on TV or in a movie. Listen to many voices, even if you have to read to hear them in your own mind. Meeting one autistic person doesn’t make you an expert, and there’s many of us out there with endless stories to share. Some of us don’t have proper access to share our stories, some of us have suppressed our stories because we don’t have people to listen, just police us. This April, educate yourself and support autistic groups that actually do good for our community, like Autistic Self Advocacy Network (http://autisticadvocacy.org/) or even the Autism Women’s Network for femme or female-identifying autistic folx. (https://autismwomensnetwork.org/) Challenge what you think you know about autism, and learn from those of us who actually live it. Look to the past and see how little we have progressed as a society in the fair treatment of disabled folks, it’s only been a couple decades since widespread institutionalization of autistic folx. Stop and ask yourself is you still used works like special needs or differently abled. Progress starts with you. We don’t just need awareness, we DESERVE acceptance & appreciation as well.

[ANTI]Social

My palms are soaked with sweat and my breathing is so heavy yet erratic I wonder if I’m having as asthma attack. My arms shake so bad I wonder if they’ll even work and I feel as though my ribs are tightening around my lungs. Pain shoots up and down my back and my body stiffens. My heart is beating so fast I wonder if this is the end and Its going to explode out of my chest and leave me on the hard wood to die. My hand grabs the cold golden doorknob with the slightly chipped paint and suck in a breath so deep I wonder if it’s in a completely different realm.

Opening the door I squeak out a “thank you” as cardboard hits my fingertips and a package is thrust in my arms. I turn swiftly and lock the door behind me, cradling the package to my chest and trying to catch my breath that went back to erratic.

It was just the mailman, but you’d think I was just delivering a speech that would save me from life or death. Just a small package and two words and I feel like breaking down and crying. Did I say thank you loud enough? I kind of fumbled the package, does she think I’m dumb? Last time she asked about a dog and I said it wasn’t mine, thinking she meant the one at the gate but she didn’t, she saw Oberyn, does she think I’m dumb? A liar? I can’t stop fixating on the tiniest, smallest things in a simple interaction that I wear myself down to one rusty spoon to offer up for the day. A simple interaction took all my spoons for the day and I’m feeling like I need a do-over. It’s only morning and I still have so much to do. I’m over socialized and overwhelmed and I’ve yet to even eat for the day.

I try and push through my routines, swallowing down applesauce to quell my nausea, shoving my prescriptions in my mouth and hoping the anxiety pills kick in soon. Smoking weed until I feel like I’ve gained a couple spoons and can start fresh.

My phone starts ringing and it feels like it’s ringing for five minutes as I stare in panic. I don’t even listen to the voicemail, hearing another voice on the phone who isn’t my mother makes me shut down, I feel locked in place. I read the patchy prediction of what the voicemail says and text my girlfriend to let her know my doctor needs some information. The thought of speaking on the phone makes vomit rise in the back of my throat and everything tastes like applesauce. I imagine everyone I know is laughing at me or making fun of me for the fact that I “can’t do adult things by myself”. I start to think about situations that happened years ago and fixate on what I did wrong, nitpicking every little detail of a memory someone else probably doesn’t even have anymore.

I try and distract myself on social media but even there I feel like I’m just floating above, hoping I’m not too annoying. I see beautiful faces, selfies of friends I admire and I like them. Fingers hover over the keyboard for a good ten minutes as I delete what I want to say about 8 times before finally saying nothing. Sometimes I get brave and send a reply, “You look so gorgeous today”. and I’m stuck for five minutes wondering if they think I’m annoying or fake. Maybe I get the courage to post a few photos of myself but then I’m burying myself in self loathing. Everyone thinks you’re dumb, ugly and trying to hard. You’re not cool, you’re annoying and you’re not going to get ANY likes and you think someone would actually retweet YOUR ugly fat face? HA, yeah right. If I don’t eventually delete my face from the internet, I find myself crying at the lack of numbers on my posts, trying to find some mantra about how it doesn’t matter while my anxiety eats me alive. I’m back thinking about failed friendships, or even darker things, like past assault and other nightmares.

I distract myself with some weed and a video game. I have a meltdown when I can’t do something right in the game, I mess up on a button combo and hit myself in the head with the remote, cursing my existence and belittling myself until I’m left a meek child. Oberyn helps me calm, I can feel him licking my cheek and the fog starts to clear. I have a good round of the game and I’m feeling a little better. Im dreading the clock because I told someone I’d do something with them but I can feel my body magnetize to where I am sitting. The one who couldn’t sit still can suddenly sit quiet as a mouse. I think about a cute outfit I have and how I’ve really wanted to do this thing. I start imagining how fun it’s going to be and then the darkness creeps in. You’ll look fat in the outfit, your hair is bright so everyone is going to stare at you, and think you’re weird. You haven’t covered that one tattoo up yet so everyone is going to notice and make fun of you. Your face looks really fat, shave your legs, fuck! everyone is going to think you’re nasty, you were born in a girls body, ACT LIKE ONE, you’re not genderfluid you idiot you have long hair, you have giant boobs! God you’re so fucking stupid, your Dad would be so embarrassed. I hate myself so much that I shrink into myself and make an excuse as to why I can’t go anymore. I could just tell the truth, but they won’t listen. I’ve tried to be open about mental illness and they say they understand but get mad when things are present. Your anxiety is making your IBS flare so hey, you’re not lying if your stomach hurts, just leave it at that. I stare at my phone and unanswered texts, words floating in my mind but I can’t get my fingers to type, i mentally prepare what I am going to say in response and rehearse it a thousand times before I don’t even know if my words are worth it anymore. I’ll probably be too late and they’ll dismiss what I say anyway. They’ve gotten their answers elsewhere, mine are probably wrong anyway. People from my safe space text and I can find the words a little easier, no judgement, but sometimes I can’t find the words to exchange with them either. Sometimes a random thought escapes and lands on my social media, a photo I’d been meaning to post or something. I cannot predict my socialization abilities, and making plans scares me for fear of failure, yet allows me the time to mentally prepare myself, even if it means days of doing nothing to save my spoons for a day of something. There are thousands of thoughts banging on my mind, echoing behind my ear drums for a chance to be heard and I’m wrecking myself trying to release them coherently.

I’ve done nothing all day it seems to someone else. But for me, even getting up and doing my chores, getting on the treadmill or running outside to take out the trash are all big deals. Going outside when I can hear people? I’ve overcome one thing. Getting up and cleaning a mess despite radiating pain, another small victory. Running on the treadmill for a bit, a HUGE step for me. Yet I think about the voices externally who put me down and the voices in my own head. You’re nothing, you’re useless, people do that shit every day with no problem, do you want a cookie? My mouth tastes like copper and my tongue sticks to the roof because it’s so dry. I feel like a burden. I think about the voices and faces of those who love me unconditionally. I think about how my little victories help them get through their days. I think about how the meals I make are something they look forward to. How a safe clean house gives them a solace when the world tears them down. How my weird collections bring them joy at times, or my mass of films entertains them. I force myself to think about them and them only, my boys, my tribe, my momma, and even my Dad in the sky. The dark thoughts are suffocating. I smoke a giant dab and laugh as I blow the smoke into bubbles. This is a GOOD day even, because perhaps I started my day being triggered, I may not even answer the door, but just stay buried in dark thoughts. Perhaps my back pain will not be soothed by anything, no amount of weed or therapy or heat will help. Perhaps I can hardly walk. Maybe I’ve got another flare up of my chronic bronchitis. Maybe I threw up blood. Maybe I just can’t stop shitting. Maybe it’s everything all at once. I bury it until it trickles out in little ways or I finally explode into a meltdown.

A day that seems so simple from the outside involved a battle with constant demons in truth. What seems like an easy task for you could be an entire world war for someone like me. Autistic folx have executive dysfunction, so the little steps you follow in your daily life are often askew for us. You know that to go to work you have to grab your keys, open the door, go outside, start your car, and drive. For us, those steps might be missing parts altogether, be reversed, or lacking all the steps aside from beginning or end. The tasks we perform that seem tiny to you, might be massive to us. Every day I battle my mind, and climb many walls in order to function in any sort of way that you could deem “normal.” My victories, no matter how teeny tiny, are still victories. Every day I don’t let the demons win is another day I’ve thrived. I am climbing my own mountains daily, to you they are merely molehills, and nothing special. But to me, somedays just being here and being heard is like winning a marathon. I’m not the easiest person to understand, but I don’t deserve to be vilified because you don’t get me either. My inner circle may be small, but It’s small because that is where I feel heard, and that is where I feel loved and safe. Being jealous of that is ridiculous because you can’t just skip into my life without understand the complexity of it. Just as I am often the quiet observer, it’s your turn to take on that role, to see and understand things deeper. It’s not a personal attack, just a request to dig a little deeper, to actively think in someone else’s perspective.

Stop. Read. Think. Breathe.  Have you learned anything yet?

Not Of Your World.

I’m not like everyone else. Not in that John Green pixie dream girl sort of way either. Not just some weirdo who doesn’t fit in, I feel often as though I am from a different planet entirely.

I’m an observer. It comes from being locked in my head regularly. Nearly every day, I spend a good chunk of it without the ability to even speak. I can type, I can write, I can moan, groan and even use some very basic sign language. But words are lost, building in my mind, creating giant towers of thought and expression that are trickling out of a tiny doorway. Brick by brick the fragmented thoughts attempt to escape, they come out backwards, the wrong tone, twisted and strange. Sometimes, it’s merely an echo of sometime else’s voice. A joke is told, the punchline delivered, and I repeat it with a laugh only to have every pair of eyes look at me like I’m ruining their moment.

I’m always ruining someone’s moment by not being what the expected of me. But they don’t realize that their expectations aren’t something I am able to live up to. I regularly use the word ableist to try and show those around me that their expectations don’t cater in any way to those of us who are disabled, on many different levels. Neurotypical expectations lead us to failure, to self loathing, to pulling away. The same pulling away people so often take personally, and don’t realize their actions pushed us there. I’m constantly buried in fault when I don’t do or act as people assume I will. I can’t even predict my own behaviors, how am I supposed to know? This is why I shut myself in, shut myself down, and pull away. Yet even from my dark corner I can still see people pointing and laughing, not letting go as if they’ve chained themselves to me when they had every chance to just leave me be.

In going about my life, I can feel the eyes on me. They watch every little detail of my existence, when I pick my skin, when I suck my hands, when I walk on my toes and flap my arms, when I make strange noises or rock along to music. I feel them when I get up in the morning, sick to my stomach, engulfed in pain and smoke some weed. I feel the hypocrisy as they sip their afternoon beer whilst I take another drag of a joint, why do you smoke so much? Not realizing when I don’t smoke weed I spend my time laying down, curling in the fetal position in pain. I can’t eat, despite feeling my stomach damn near eat itself, I am buried deeper in a silent coffin, waiting for the cannabis to hit so I am no longer locked away. But to the judgmental observer I should just pop a handful of pills and live my life as a zombie. Maybe it’s so they don’t have to hear when my voice finds it’s way out or placate my fixations. Maybe it’s easier for their expectations if I’m drugged down and complacent.

I’m sucked back to that little kid on the playground. I have a clear memory of trying to play on a see-saw by myself, building an imaginary friend named Ashley who didn’t judge me for being pudgy with frizzy hair and weird obsessions. A friend who listened and didn’t just wait for her turn to speak. Someone who didn’t quack when I walk or try to gaslight everything going wrong in my body. I still feel this kid, trying to find a place to belong. Trying to find their place in the sun. I’ve been buried in judgement as long as I can remember, every day I look at in in the mirror and open myself up to it socially as well. No matter what I do, someone is always watching and questioning. I’ve seen you walk, why do you have a wheelchair? Because, Martha, I have two severely damaged discs in my ankle and have had back surgery. Some days are easier than others. I have spasms so bad I can’t even drive anymore. Would you like to exist in my body for a week? Why do you have a service dog, you seem normal to me! Because Billy, I’ve spent my entire life being told by people just to act normal, it’s a force of habit. Also stop watching things like Rain Man and making dumb assumptions about autism. Why do you suck on a blanket? Why don’t you stop talking about __________? Why? What? When? Everyone wants to ask a thousand questions but when the answers don’t line up to their limited and often ignorant assumptions, I’m the bad guy.

All anyone wants is a safe space. For someone like me, that is crucial. I should be allowed to live in this world too, and not have access to the same opportunities as others even if I have a different way of getting there or doing things. I shouldn’t be laughed at or made fun of because my way of doing things or thinking don’t exist in narrow boxes you build for me. So many just watch and mutter and assume without actually seeing me. Its all I truly want, is to be seen. To be seen as someone who ISN’T a burden, someone who isn’t worth the extra time or effort. I cannot change the things that are woven in my DNA but I can change how the world sees and treats me, I can continue to be open and honest despite the people throwing bricks at me. I can continue to be myself unapologetically and force people to suffocate their expectation when I don’t back down.

I am 34 years old and I’ve drowned one too many time in ignorant viewpoints, suffocating myself trying to be what other people wanted me to be. It’s taken me three decades, but I am who I am, and I’m learning (slowly) that I don’t have to apologize for who I am. My existence is a lesson for all, my being is an example of how complex and unique each autistic individual is. Perhaps I am NOT of this world, maybe I am evolution. Maybe I am your future, someone whose primary senses are advanced, perhaps my quirks that you see as annoying all have some greater purpose. No matter what, I’m not longer going to let dark clouds loom in my sunlight. I am worthy of love and being here on this planet. I am worthy of being heard and seen, and no longer will I hide who I am to satisfy others. This world isn’t just yours, but it’s mine too, and it’s about time you share it without holding ableist viewpoints over my head.

I am Josey, I am autistic, and my voice, no matter how small, deserves to be heard.

On Love’s Lessons

Just as I am autistic and of a spectrum, so is love. My sexuality is its own spectrum and it surely seems my gender identity is too, perhaps my entire existence is one big spectrum. Regardless, these are lessons I have learned, and am still learning, about love.

Love is complex, it can bite you like cold down to the bone or like a playful puppy learning their boundaries. It’s different from person to person. It doesn’t have to be sexual, it doesn’t have to be physically intimate on any level, love can span distance, time and so much more. This was my first real lesson.

I often thought I was in love with people in an intimate sort of way because I had strong feelings for them. I had this happen in high school, before that even, but one situation I laugh at now is high school era. I thought I liked my close friend “like that” because I had a deep admiration for her that wasn’t just oh, we have this or that in common. I didn’t realize then that it wasn’t any sort of intimate love, the idea of even ever kissing said person was laughable then as it is now. In ways, I wanted to be her, not be with her. I didn’t understand it at all then, but eventually I did, and laughed it off. Even today, I have close friends I love and admire so intricately but would never be amorous with them. They have a place in my heart carved out so carefully that passersby make jokes we’re too close but it never truly phases, it just feels good to have people understand and get you for once. To know you love them, but aren’t IN LOVE with them. I’ve had too many confuse my feelings, including jealous boyfriends of female friends. One such got huffy when his girlfriend wanted to ride more rides at Disneyland with me rather than him. Our friendship fizzled soon after because his jealousy was too big, ugly and overwhelming for her to fight against.

I wandered with notions of love, strong feelings for what people seemed to be in my perception. I didn’t comprehend then (and I still catch myself forgetting now) that people are complex, even Shrek said we’re like onions, with many layers. Sometimes what we love of a person is their outer layers and maybe when we get too deep inside or know them too well we don’t love like we used to. It isn’t a crime in love to let go either. I’d long believed that you had to hang on with a death grip to everyone who came into your life, that love was measured in the quantity of people you gave it to not what you gave out in general. It’s not like that though, you don’t have to force every piece to fit, and not every one will. It’s okay not to fit together perfectly, because you probably just fit better somewhere else. Priority being that your body and mind as safe & sound and in the shape you want them to be. Perhaps I lost you at the puzzle talk, but my father-in-law always says “there’s two things in life you shouldn’t force – love & farts, either one could turn to shit.” The short feisty Canadian man has a point. You can’t force people to understand or do things you want, especially if you just cant connect in the communication department. Its okay to step back, to step away, to give it time or to let go altogether.

I wandered long looking for an intimate love, and I’m there now.  I spent too much time grasping onto any notion of love, any feeling that sprang up between me and a paramour. I thought I had to take what I got because I wasn’t deserving of anyone else. My girl is the only person I can be raw, real or open completely to. Whilst I am pan-romantic and joke about seducing celebrity crushes, I myself am truly asexual. Yes, asexuals can be in relationships, have sex and so on. Sex isn’t something I find necessary in a relationship, personally. Its intriguing to me on a psychological level, it intrigues me on a human hormonal level too at times. Being autistic it can be especially overwhelming for me in correlation to my senses, emotions, hormones, etc. However, I do feel comfortable and content in being intimate with my current partner when it does happen but it isn’t a requirement for our love. For once in my life, after chasing every rainbow of the spectrum that is love, I know what it truly is to be IN love. To be head over heels, can’t breathe right without them there, laugh at even their worst jokes, countless memories and wished on stars and footprints in the sand. She’s the one who has seen me at my sickest, my lowest, my darkest and still held tight to me, my wheelchair or whatever she could hang on to. I learned to laugh at every person who assumed because I was queer I was in love with them. I learned to let go of the hurt of my past and just embrace someone. There are still scars that are healing slowly because they’re just too deep, but Jackie is my the hand I hold to remind me someone is always there. We butt heads, I get frustrated at times but Jackie is eager to learn, eager to peek into my mind and see what makes me tick. I don’t know how many of you are familiar with Heroes…but almost like Sylar, without being a sociopath. She’s eager to spread autism awareness and appreciation. Eager to right her wrongs and eager to help me right my own. We don’t always see eye to eye, but I imagine it would be incredibly boring to have someone around who is 100% alike you in thought. Her stubbornness may drive me wild at times but it’s also saved me a thousand more. I have learned from her that our love isn’t going to ever be seen like anyone others and I’m perfectly fine with that. It’s not like any book or movie or friends story in passing. It’s silly, pertinacious, batty, marvelous, weird and a constant learning experience.

Love is a spectrum, it’s different for every person you meet. The love for your children is different than the love for your grandmother, as is your love for your favorite coffee shop barista, a a doctor who actually listens to you or your boyfriend/ girlfriend/ personfriend. Love is unique like snowflakes and no love is exactly like the other, no matter how many Nicholas Sparks books one may have read. Love IS complex, but it’s not impossible. We all understand it on our own level, experience it in our own way. Love is wild and unruly at times yet nothing to be ashamed of. It took me a long time to see my own worth in love, but we are all worthy of finding it, whichever way it may show up.

My Gender Identity isn’t yours to define.

I never felt like I belonged in the gender binary. I tried, even as a young child, to fit into the stereotypes that existed for the parts I was born with. I settled for purple instead of pink, played with dolls, tried to sincerely enjoy the clearly very separate toy sections of the toy store. My brother collected his various goods, Biker Mice from Mars, Power Rangers, Ninja Turtles and so on, and I collected a cabbage patch kid or two. I never got the divide, the direct split you could literally see in front of you in any toy store or kids clothing section. Why couldn’t I be both then, why couldn’t I be something beyond just the binary. Tomboy was thrown at me. I had my hair cut short around 9 and was head over heels for dinosaurs and Laura Dern. A woman called me a little boy at the mall once with my mom and I was overwhelmed by the idea that someone actually thought I was a boy…that I could pull it off and still be a “girl”.

I never knew there was something beyond as a child and tired to fit in so many narrow boxes. I tried to pretend I wasn’t dealing with mental illnesses, like I wasn’t different in any way. I hated how I felt in certain articles of clothing, I hated how confined and suffocated I felt living so many lies. Sometimes I felt like I was a boy, masculinity coursing through my being, and sometimes I felt more effeminate. The older I got, the more I realized that we, human beings, are the ones who forced these ideals – dress, hobby, lifestyle upon gender. Many cultures have more than one gender, and some even worship those who are different like they are a deity. I often caught myself thinking about the ancient Greek’s and how their gods and goddesses didn’t follow strict gender roles like today. Sometimes I wonder if I am Apollo, mixed up a bit with Athena or Artemis.

The more I begin to understand my being, the more I let others silence the voice that was blooming. People I thought would understand were already stereotyping being gender fluid, existing beyond the binary. My hair HAD to be short, I had to dress and act a certain way. I threw myself back into confusion and self loathing, was I wrong? Was I confused? Was everyone else right? I couldn’t possibly be gender fluid if I still had long hair or sometimes wore hair bows, was what they were telling me. The very sort of stereotyping and ignorance that leads people to be just as lost, hurt and confused as I have been. People don’t know how to be who they truly are because other’s try to dictate their existence. One I let people stop trying to tell me who *I* was, I began to peek out of my little hiding spot. I found a lot of inspiration in my close friend/family member Faith, whose own open journey through gender and sexuality lit a fire within me to be more open and honest myself. It was one night, up alone and watching Violet Chachki videos that I finally broke down and just cried. I cried the tears I’d been holding in for too long, I felt a release of honesty within my being, like I’d finally embraced my own truths and existence. A good friend Essa once directed me to read Amandla Sternberg’s words on their own gender identity and I felt far less alone. The less alone I felt in the world, the louder the voice began to get again. Jinkx Monsoon, JD Samson, Kate Bornstein…the more voices I heard, and the louder I could sing my truths.

I realized that I didn’t have to shove myself into any tiny spaces that I didn’t fit in, my identity is mine and no one else could take that from me. I coached myself, I started to slowly dress more for myself than others. I didn’t shave my legs or face or armpits unless I wanted to for whatever reason. I let my hair grow long and wore a shit ton of highlighter. That’s me, that’s Josey. Some days I may have a packer in my pants, some days I don’t. I’m coming to terms with who I am, and I am starting to really love myself and this newfound freedom to be myself, disregarding judgement from all sorts of angles.

You can call me boy, you can call me giiiiiirl, she, he, him, her….I don’t have a preference. You can just call me Josey, if you want, but what I ask most of all is that you treat me with respect. This journey is far from over for me, and I need ears to listen & minds eager to understand.