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Featured image is of a golden infinity symbol with the phrase “Autism Acceptance” written on it, made by Luan Huynh, found on Google.

It’s “Autism Awareness Month” and I have some things to say.

  1. We don’t need awareness, we need acceptance. Try “Autism Acceptance Month” instead. And to that effect, if you accept Autism, then you just need to start accepting anything you might consider “weird.” You can’t tell someone is autistic by looking at them or without interacting enough with them to know who they really are. Leave your judgment and assumptions behind.
  2. Autism is NOT a developmental disability, disorder, condition, or otherwise “illness.” There are MANY co-occurring conditions that can be in the same body as someone who’s autistic, but that does not mean those conditions are Autism. A non-exhaustive list of these conditions: Tourette’s Syndrome, Dyslexia, Dyscalculia, Dyspraxia, Visual Impairments, Gender Dysphoria, Auditory Processing Issues, Sensory Processing Disorder, Synesthesia, Epilepsy, Hyperlexia, Executive Dysfunction, Bi-Polar, OCD, BPD, Aphasia, Apraxia, Echolalia, Aphantasia, Tinnitus, etc.
  3. Autism IS a neurotype, natural to the range of human diversity. But it is not just a neurotype, it’s literally a whole nervous system. Autistic people, on the whole, receive and process stimuli differently than those who are not autistic. And still, not one autistic person is the same, just as not one neurotypical person is the same.
  4. Autism Speaks and other organizations who advocate for the use of Applied Behavioral Analysis (ABA) or Positive Behavior Support (PBS)—any organization or institution that preaches about needing a “cure” and supporting research for it too—should NOT be trusted. ABA/PBS is abuse, full stop. There is no cure for autism, full stop. We are not broken, we simply have different support needs. And those support needs do NOT include needing to repress what makes us who we are in order to fit a standard expectation of behavior that harms us.

    Oh, and PLEASE drop the blue and puzzle pieces. These symbols were not chosen by the autistic community, and are associated with pathology. DO use the gold infinity symbol, or embrace red as the new acceptance color.
  5. Phrases like, “You don’t look autistic, I never would’ve known!” or, “Everyone’s a little autistic these days,” or, “I don’t believe you, you’re so good at [insert behavior or task],” are all harmful! All of these phrases invalidate an autistic person’s lived experience and diminishes their issues with living in a neurotypical world.

    Autism doesn’t have a “look” or specific lived experience. Like I said, not one autistic person is the same, and it’s ableist to say Autism has a certain “look.” People who claim Autism has a certain “look” are actually misinformed, or purposefully discriminatory towards those who have external differences.

    It is natural for some traits to be present across all types of individuals—that is any expectation within the diversity of humanity. Shared traits, however, does not make everyone autistic.

    Just because someone can do something well does not mean they are capable of doing something else well. That’s false equivalency, and that kind of assumption is completely unfair. It is frequently the case where autists excel at something we’re passionate about, but when it comes to doing something more mundane, competence is harder to come by. Dismissing our struggles like this is ableist as well. This goes in line with functioning labels. Functioning labels (high or low functioning) are harmful constructs because they deny autists agency and dismiss lived experience. “High functioning” often results in someone suffering greatly behind the scenes (frequently barely functioning), and “low functioning” often pigeon-holes someone into being less than what they’re capable of. Instead, simply talk about support needs, as everyone’s are different.
  6. It’s important to address autistic people as “autistic” and not “people with autism.” We are not “on the spectrum,” or rather we are, but that’s nothing special, because literally every human is “on the spectrum” (the spectrum of human diversity). Autism cannot be separated out from us, as if it were a handbag we carry. And again, it’s not a disease we need to be cured of. Read here for more information on why identity-first language, instead of person-first, is so important.
An image of 4 stick figure drawings. First figure is being stabbed with a rainbow colored knife with the caption, "suffers from Autism." Second figure is standing atop a rainbow segment with the caption, "on the spectrum." Third figure carries a rainbow handbag with caption, "person with Autism." Fourth figure's head is colored in rainbow with captions, "Autistic person."

Autism enriches the world. We are great thinkers and contributors to our communities. We are innovative, creative, intelligent, funny, positive influences, the list can go on. But we don’t need to contribute or be productive in order to be seen as valid and worthy of love and acceptance, of just being who we are (this goes for *anyone*). We don’t need to be conditioned into something we’re not. We don’t need the world to tell us we have “special needs.” We’re not sick or broken.

It’s time we start looking at the environment in which we’re unfit, instead of looking at the individual like autism is the problem. Why do autistics struggle? Because we don’t fit the mold. Why is there a mold to begin with? We’re all PEOPLE, not clay.

Let’s stop pathologizing neurological differences, and start embracing each other for who we are! Let’s focus on meeting support needs without judgment!

Happy Autism Acceptance Month! Thanks for reading!

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Featured Image Description: the Disability Pride Flag, featuring a lightning bolt shape of blue, yellow, white, red, and green lines combined overlaying a black background. You can find its symbolism here.

It’s been Disability Pride Month all July and I have something I’d love to share, finally! (My demand-avoidance does not like having to write themed posts within the correct time period, go figure.)

Bella, the Goldendoodle. She has light golden hair with a white chest and white around the tip of her brown nose and atop her paws. Her eyes are hazel green and she’s wearing a very large open-mouthed grin. A happy pup.

This is Bella, my mom’s dog. Mom kind of acquired Bella by accident. Granted, Mom was looking for a puppy, but the litter that she was hoping to get one from had already all been claimed. However, just before Christmas, the breeder called my mom up and told her that someone had returned a puppy, and wondered if Mom would be interested in purchasing her. Naturally, Mom said yes.

A picture of Bella in front of a white door where she looks like Simone from Disney’s “The Lion King”, who is pictured to her right for comparison.

Now, while I don’t agree with the existence of breeders per-se, and I think Mom should have gotten an older dog from a shelter, period, I am very grateful for Bella in my life. She’s a lot to handle, as Goldendoodles aren’t exactly even keeled, especially this one as she’s more Golden than Poodle—she’s a doozy. Even so, she’s more than not a delight and brings a lot of joy to our lives.

Pictured above: To the left, Bella and I sitting outdoors in frame, looking off to the distance. I have short, bleach-blond hair, and lines of black eyeliner across the bottoms of my eyes and on the bridge of my nose in a unique design. I am wearing a blue tie-dye shirt on. Bella has a purple collar and bright golden fur. To the right, Bella is looking over her shoulder at the camera, her tail curled up toward her face. She has a open grinning mouth and brown nose, happy as can be.

You might be wondering why I am writing about her for Disability Pride Month though. Well, I’ll tell you: it’s because we share the same connective tissue disorder, Ehlers-Danlos Syndrome (Hypermobile type III, or hEDS). Granted, Bella has never been diagnosed officially, but I know what my disease looks like, and dogs can and do have autoimmune/connective tissue disorders. 

Here’s a list of some symptoms, just so you can see it too:

  • Incredibly lax and stretchy skin (it’s absurd how far I can pull her fur away from her body)
  • Hypermobility (like SUPER hypermobile, she can turn herself into a ball where her head is far overlapping her rear end; I swear she could be an owl with how far she can turn her head too)
  • She’s ridiculously clumsy (like, no proprioception—the body’s ability to sense movement, action, and location—at all)
  • Chronic illness of others sorts such as bad allergies, upset stomach, and UTIs
  • Beyond sensitive skin (we think she’s allergic to metal or something, but she’s constantly needing medication)
  • She braces herself when she sits (has to do with hypermobility, where one must find external support, move around a lot, or hold oneself awkwardly, as the joints do not hold themselves together properly)
  • She can’t play for more than 5 minutes at a time; she stops to either eat grass because of her stomach or to catch her breath (I’m assuming she’s usually in some kind of pain)
  • Her gums are super sensitive and it takes next to nothing to cause them to bleed

SO yeah, Bella has been incredibly expensive to take care of due to illness and I’m glad she’s my mom’s dog and not mine. That being said, I love the ever living crap out of her. It’s been a wild time reliving some of my medical and social trauma through loving and taking care of Bella, but it’s also been healing. 

Pictured above is 3 photos of Bella sitting oddly, where she’s bracing herself by relying on her front paws for support, her hips sprawled out.

There was one time where I came home to find Bella unable to move well at all. She had overexerted herself playing with some new doggy friends at the park earlier that day, and when I came into the room, she tried her best to hobble over to me, but it was a tragic attempt. Seeing her like that shocked my system. It was in that moment that I knew without a doubt we shared the same connective tissue disorder. I crumpled to the ground, with sobs racking my body as I hugged her close. I knew the pain she was in, and the strength that it took her to want to move at all towards me. I saw how pure her love was at that moment too—to want to be close to me and still feel excitement through the pain. Quite the trooper.

Pictured above, Bella and I are sitting outside, and I am wearing a red, blue, and white flannel atop a green shirt with Grogu on it. To the left, Bella and I are gazing out past the camera. To the right, Bella and I are looking towards each other. I am smiling and she has a little “blep” tongue out.

Seeing that shared lived experience in an entity that’s other than human just…I don’t quite know how to describe what it’s done for me. Like of course it’s great to relate to other humans and learn from their experiences and heal together in our sharing, or sometimes just commiserate without healing, but I don’t know…there’s just something about relating wordlessly with an animal. I honestly attribute the phenomenon to my autism, as it’s an indescribable experience. My words truly fail me here. (One stereotypical trait of autistic individuals is to relate better/be more comfortable with animals than people.)

Photographed above: On the left, Bella sits as an 8 week old puppy, posed in a Christmas landscape to the left with a stuffed snowman, Christmas tree, a red present, lots of red tree ornaments, and golden bells with a golden bow. Bella has a tiny green ribbon bow atop her head. To the right, Bella is lying down atop some fake felt snow, with a stuffed candy-cane under her right ear. She has a red starred bow on her head and is wearing a sweater that looks like a green-wrapped present with a red bow.

As beautiful as that experience was, it is, however, hard to deal with Bella’s health on and off. It makes me confront the not-so-far-off past of not having answers for most of my life about why I am the way I am. (I frequently have to disengage as memories flood my mind about how much I’ve been dismissed and discriminated against for the symptoms I’ve endured.) The vet keeps treating her symptoms, but it appears there’s a lack of understanding of why she is the way she is. I’m grateful they keep trying to find better food for her though, and they have meds for her allergies too. 

Picture above is Bella wearing a sparkly blue and silver Happy New Year top hat that matches her blue protective collar (used the same purpose as a cone of shame lol).

The good of our relationship though? She teaches me how to rest, how to be proud of my strength and love, how to stay and live in the present moment. She grounds me to the earth and to my body. She is my friend.   

Here we see Bella assisting (read: distracting) me from writing this very article. And you can see how she uses my as a backrest because it’s hard for her to sit up right, just as I have a hard time holding myself up because of hEDS. Kindred spirits, her and I. I consider myself very lucky.

So, all this to say: Happy Disability Pride Month. It’s things like this relationship I have with Bella that I seek, to bring me joy and peace amidst the chaos and pain of chronic illness. Thanks for reading!

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Image description: a bald human is cringing in pain and effort with their hands at their temples, presumably rubbing them. A forcefield radiates out in rings from their forehead. The caption reads: Me trying to remember what I heard or said just moments ago.

Cw: ADHD management and healthcare story/rant

So today was the 4th time within 3 weeks that I’ve fucked up in bigger ways because of ADHD brain. Here’s the storyline, and then I’ll get into specific issues with healthcare:

It all started 3 weeks ago when, after basically fighting with my PCP, I had the opportunity to drug test for controlled substances so that I could start my ADHD treatment early (I’m seeing an actual psychiatrist at the end of this month). Because I had the immediate opportunity to jumpstart treatment, I accidentally bypassed the appointment I had that day for my TMD treatment. I realized 5 minutes too late to make it, had to call in all embarrassed, and reschedule. All was fine, but it’s just really frustrating and ironic that I was getting screened for ADHD medication while missing an appointment because of my ADHD (in two ways). 

That rescheduled appointment was then scheduled for a time I forgot I was going to be out of town during, and had to again reschedule that last minute as well.  

Then later in the week, I almost missed my re-rescheduled appointment, EVEN THOUGH I KNEW IT WAS IN MY CALENDAR, because I was out from other obligations and thought in the moment that it would be convenient to go grocery shopping since I was near the store. Half way through filling my cart I realized I had to be at the other appointment, rushed to put everything back, and made it out to where I needed to be with no time to spare. FINALLY I made it to my appointment that I’ve been waiting for, for almost a month. 

Cool, some fumbling around and embarrassment, but nothing major (which, I’ve definitely missed major things in the past) because all turned out fine. 

Then today, after weeks of planning with my mom for me to watch her dog while she’s away, I realized that I have a very important psych appointment Tuesday this week (for ADHD treatment). I’m supposed to watch Bella (the dog) down near the Finger Lakes, which is an hour and half away from where I live. Mom and I arranged for me to stay there all week, which would have meant that I’d need to leave Bella in her crate for several hours Tuesday. Thankfully Mom isn’t leaving until Tuesday morning anyway, so she can stay with Bella back home (not at the lake). Now I can stay home until my appointment and then take Bella after. But Mom went out of her way to make sure she borrowed a car to take the dog to the lake today, and she was counting on me to also water the flowers. Once again I leave people at a disadvantage because my brain can’t even keep its shit together for a day.

“You need a system, Jae.”

Yes Mom, that’s why we’re even having this conversation right now, because I have a system and it caught my mistake TODAY instead of DAY OF. But I can’t be hypervigilant and take in my schedule for the whole month every day. I can barely make it happen for a week at a time. That’s so much anxiety. That’s so much juggling of too many things, even though it’s all written down, when my processing and capacity are already at a low. I often can’t get shit done if I’m stuck in a mode other than “one day at a time”. 

“I need you to be here at 10AM”, demands Mom. “You know I have an appointment to be at! Let me make sure I can do that,” I answer. “You already told me what time it’s at!” she barks back. “Yes! And I don’t remember!” This is seriously how my brain is nearly 100% of the time. I can’t remember things that I just uttered 2 seconds ago much of the time. It’s a stressful existence, to say the least.

Who the fuck cares, right? I’m privileged that this hasn’t had a huge impact on my life, as a lot of this is “first world problems” kind of stuff. But shit adds up. My healthcare was almost jeopardized several times, and I’ve caused people I love a lot of stress and undue inconvenience. This is why I need ADHD treatment, not just to aid me in getting my shit together for my own life (career and self-care wise), but to make sure I inconvenience others less with my mistakes. 

Mental health wise, I don’t think people realize how much ADHD can wreak havoc. There is more than memory dysfunction. Not only does it make my relationships difficult to maintain through fuck ups like this, but there’s no relationship degradation either. So when I don’t see or talk to people for months, much of the time I feel like we should just pick up where we left off because to me, nothing’s changed. But to them, that time period of not interacting with each other means they’re no longer important to me. Thankfully most of my people now are also neurodivergent (ND) and know what this is like, so we don’t hold each other to neurotypical (NT) standards, but it still sucks. Even then, the fear of that degradation happening is there. 

Rejection Sensitive Dysphoria (RSD) is also a thing for many ADHD folk. RSD makes it so perceived AND actual rejection takes a genuine attack on the psyche, where often it catastrophizes into “everyone hates me” and “I’m only a fuck up” kind of thinking. Can you imagine having that on loop in your head almost every day? It’s really hard to rise above that and feel like a competent human being who is worthy of love and other good things. It’s intrusive, a compulsion: you have to constantly redirect your focus, which takes a lot of energy–energy that you are not infinitely made up of, especially in the face of many daily adversities.

And then you have the very real impact of big fuck ups, like missing an important appointment. Not only can you be penalized by the entity that you were supposed to meet with, but the shame that comes with that kind of fuck up HURTS. It is actually physically painful a lot of the time (because of how I’m wired). And it only reminds you of all the other times you’ve repeated the same behavior that you also physically can’t prevent. I can, and do, set multiple alarms, have multiple lists, have multiple calendar events (often set at least 15 min before the actual start of the event)—all to keep me on track, and these mistakes JUST KEEP HAPPENING. 

I genuinely don’t think NT people or maybe OCD/high anxiety ND types can grasp this kind of lived experience, and it’s super frustrating to feel added judgment because of that. This is not a “woe is me” post. This is a call for awareness that a lot of us try so freaking hard and still fall short. This is to ask people to stop judging others because they’re consistently inconsistent. As hard as I try to fit into the systems that be, I simply DO NOT FIT. So many of us ND folk live in this kind of existence, day in, day out. It’s exhausting. It can be incredibly debilitating. 

“Jae is a wonderful student, they just need to work on consistency.”

– A college professor of mine.

I’ve been working on being consistent my whole fucking life. Gods how I WISH I could just gain and keep those skills, after all this time “working” on it. 

And to end, a rant on medical care:

I had to argue and prove my medical history to my PCP for him to take me seriously about ADHD treatment. First off, he doesn’t even believe adults can have ADHD. Like, what happens to children with ADHD who grow up? Their neurology just changes at the age of 18, like a flip of a switch? You can’t be “cured” out of it, it’s a friggin neurotype! Which, it doesn’t even need curing, it needs specific accommodations, just like any other neurotype. So not only did I have to feel invalidated and judged for needing medical treatment for something my doctor doesn’t even believe in, but he kept pushing medication (that I hadn’t remembered at the time that I’d already tried which put me in the hospital). He kept pushing Strattera because it’s not a “controlled substance”, when Adderall literally was the only thing that worked for me before, even though I was on too high/frequent a dose (and it also almost put me in the hospital). I am a firm believer that I can make my life better, more consistent, if I have control of my ADHD treatment. If I get to decide how much and when I need to take a stimulant, then I may be better suited to managing the days of capitalist, ableist society.   

I finally got to take a drug test, after confirming that having THC (weed, or better, cannibis) in my system would not fail me (though I only got verbal confirmation, and I wish I had gotten it in writing). And after all the to-do about not wanting to fail for having THC in my system, the test comes back negative for everything including THC. It was surprising and we ordered another test which I took the following week. Finally THC shows positive, but then my doctor goes out of town without sending my script in for Adderall. The “fill-in” doctor tells me that he can’t do anything because he needs to defer to my PCP’s judgment about the THC, making me wait yet another week for treatment. So now, instead of going into my psych appointment with a few weeks of treatment under my belt, I won’t even have a few days which defeats the whole purpose of going through this entire process with my PCP to begin with. This whole time I’ve felt like I’m being trapped into something that reflects poorly on me. I have a lot of medical trauma and misjudgments in my chart, and I feel like this whole experience is just adding to that. Either way, receiving proper treatment for ADHD as an adult apparently isn’t as easy as folk make it out to be, and it’s incredibly frustrating. It’s probable that if I had been able to start treatment when I was supposed to have started, I wouldn’t even be writing this post right now about all the fuck ups of the last few weeks.  

Update: literally as I’m writing this, I got a text from my pharmacy that my script is now filled. For the wrong mg. Well, at least I get a day to try it out I guess? Ugh.

Anyway, something-something our healthcare sucks, stigma sucks, ADHD sucks (often, but not always). And I’m Tired™. End rant.

What are the solutions though? How do we find ourselves better healthcare professionals who believe patients when they talk about their lived experience? How do we break down stigma and treat each other with dignity and respect? The best I’ve come up with so far is to speak out, and loudly, about our experiences. If you’d like to join in on the conversation, I’d love to hear about your experience too! And I encourage you to post and share in your own social groups of the same. We only have so much reach when we solely speak to each other, to people who already understand our similar plights. Much love to you! 💜🌈

Need to rant about this stuff too? I’m your guy! You can schedule with me here (read package information and scroll to the bottom to fill out a Calendly appointment time slot). Looking forward to supporting you!

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Hi friends! I hope to get back to writing regular articles soon, but in the meantime I have some events coming up that you might be interested in!

TONIGHT we have our Polyamory Panel Series session on Disability and Polyamory. This will be a fishbowl discussion to explore the dynamics of living a polyamorous life as a disabled person. From Covid, to boundaries and needs outside of the pandemic, to marriage equality, this topic is sure to have a lot of meat to chew on! Tonight, Monday April 18th at 7-8:30pm EST. Zoom link here! *this will be recorded and livestreamed*

Sunday April 24th at 2-5pm EST we have Queer^ Grief: Honoring the Beauty of Letting Go, Jam & Open Mic!

made with inShot and FlyerMaker apps

Queer^ grief is the grief we hold for having to live in a world that does not always accept, respect, or celebrate us for who we are as members of the LGBTQIA+ community. The caret (^) is for those who are additionally queer because of any other marginalized identity that is at odds with normative culture (race/ethnicity, neurodivergence, ability status, etc.).

This is a two-part event. The first 45 min will be a brave space for us to name the pain we have been carrying and find solace in one another as we share in breakout rooms. After a 15 minute break, we will be welcomed back to the space with a grounding exercise. An open format for sharing art and creative expression will follow. People will be able to share whatever form of expression their grief has produced, or that has helped them process their grief (painting/drawing, music, poetry, short story, even comedy, etc.). In this way, not only will we be able to connect over grief and set resilience down, but also be able to connect over the beauty that is free expression, that comes from that pain. More details and registration here!

*this event is free with a suggested donation of $5-35 for either segment, or $10-50 for both; registration required*

Looking forward to being in community with you!