Personal Life

On Autism and Disability

April is Autism Acceptance Month, and right now, I’m reminded of how autism is a part of who I am but also very much a disability. If you want to know what it feels like to be autistic and seemingly low support needs in our society, it’s like being told you’re supposed to juggle constantly, but you aren’t very good at juggling and people keep adding balls. When you’re in front of people (if you’re good at masking your autism or have a job), you can manage to juggle decently for an audience for a while. Sometimes, they even think you’re good at it, but the second you’re alone, you start dropping balls and getting mad at yourself for doing so. No matter how much you practice, you really aren’t good at it, but if the conditions are perfect and you’re feeling good mentally, you can manage more balls than usual. The problem is that other people see that, assume you can do that all the time like they can, and get mad at you when you can’t consistently perform. Is the metaphor a little tortured? Probably, but it serves its purpose.

Right now, I’m juggling a lot of balls, my arms are tired, and I think some of the balls might be on fire. That’s the problem with being a seemingly low support needs autistic person with a master’s degree; people assume you are consistently fine and expect you to perform as such. When I was younger, I used to be able to hold it together to the end of the semester, and once it ended, I would crash and be completely unable to function for like a week. As a 30+ year old adult, I no longer am able to do that without a very large cost physically, emotionally, and mentally, and I refuse to do so. Unfortunately, I can’t call out sick with autism or autistic burnout.

If you’ve been following the dog saga this year, you know all of the trauma and chaos that has unfolded in my life since February. If you haven’t, the Reader’s Digest version is that my oldest dog died, my middle dog scared the shit out of me by bleeding heavily and spitting out a benign tumor (he’s fine now), and my youngest dog had a soft tissue sarcoma on her nose and is currently going through daily radiation treatments. To say 2026 has been a stressful year is an understatement. One of the emotional components of autism is that you don’t process emotions like a neurotypical person, which means I’m great in an emergency and an emotional wreck on a random Tuesday when I’m suddenly whacked over the head with whatever emotion I should have felt in the moment. When a lot of high emotion things have been going on, I don’t always know what I’m feeling or what I’m upset about beyond overwhelmed. As you can imagine, not knowing what you’re feeling or why makes dealing with those emotions difficult.

In order to deal with that stress, my body has decided that the best course of action is to stay in fight or flight mode 24/7. After weeks of hypervigilance, I am emotionally and physically exhausted. Being in that state makes it hard to get anything done beyond what I force myself to do (like grading papers) and even that is slower than I would like. It also causes my chronic health issues to kick up. Most autistic people have several comorbidities that are tied to connective tissue disorders. For me, this is autoimmune problems and hypermobility that is likely some form of Ehlers Danlos. The autistic burnout feeds into the autoimmune issue which in turn worsens the burnout by sucking up your energy reserves and making you feel crappy. It becomes a vicious cycle until your ability to function is well and truly in the shitter.

More than anything, I would like to lay on the floor with my dogs and watch Kitchen Nightmares or Ghost Hunters for a week straight without a single thing brought to my attention that could stress me out. With our current administration, I doubt that would be possible, but I’m trying to cling onto what functionality I have until the last few weeks of the semester are over. I was lamenting on Bluesky about how I wish Biden was president again solely because I know I would be handling all of this better without the background noise of political chaos. I had major autistic burnout during Trump’s first administration in 2018 to the point that I tanked what momentum I had built with my writing career. I really don’t want to do that again, and the only good thing about experiencing it once is that it’s easier to recognize (hopefully) the next time.

The point of this post wasn’t to listen to me gripe about how my life has been sucky for the past few months but to illustrate that autistic adults who have partners, jobs, driver’s licenses, etc. are still disabled. I appreciate having autism for the strong sense of justice/fairness, the different way I think and view the world, etc., yet I’m still disabled. Our society isn’t set up for people to say, “I need a week long time out because my nerves are fried.” Most jobs will tell you to either take vacation you might not have or to find a new job, and ultimately, this is one of the many reasons autistic adults end up under- or unemployed. If I wasn’t in academia where I work only a few days a week and have summers off, I would be fried constantly. The trade off is that I make abysmally low pay and am underemployed. Most of us would love to find a situation where we could do something we’re good at under conditions that don’t make us pray for death or feel unappreciated. When we tell you that we can’t do something or that we truly don’t want to, please believe that we aren’t just being difficult. It takes a toll on us that is far greater than what neurotypical people experience, and what’s an inconvenience for you is something that causes us to be less than functional for several days. We save up our energy or functionality and carefully plan how to allocate it, so when plans change or something unexpected happens, we end up paying the price for it.

Personal Life

Ambition v. Spoons

I hate making banana bread. And it isn’t because I hate bananas or banana bread or even baking. It’s because somehow, no matter what I do or how I plan the bananas and I are never ready at the same time.

This has been a theme throughout my life, especially as an adult as my inflammatory issues have taken a toll on my energy levels. If I have the energy, I don’t have the inspiration. If I have the inspiration, I don’t have the energy to work on my creative projects.

If you’ve heard of spoon theory, should sound familiar to you. In short, spoon theory is the idea that we all have a certain allotment of energy (spoons), and certain activities cost more spoons that others. The problem with being neurodivergent and chronically ill is that there is no such thing as a work-life balance. There isn’t a single activity that doesn’t cost me spoons, whether they’re physical or mental.

Spending time with people outside my partner, costs me even if I greatly enjoy our time together. Washing my hair will ultimately feel better, but it will cost me energy to do, which means I end up putting it off until I have to because I have work or I put it off so long that it starts to bother me from a sensory perspective.

What people don’t seem to grasp with spoon theory and autism is that things cost you spoons that don’t always make sense to others or they cost a disproportionate amount. Going to the grocery store isn’t physically taxing for me, but the lights, the noise, trying not to get clipped in the parking lot, the people, remembering to get everything on my list (I need a list because I have gone totally blank at the store), acting “normal” at the checkout, etc. is a lot that most neurotypical people take for granted. For me, this mental stress converts into physical stress, so once I get home from the grocery store and unpack everything, I wind up in a heap of fatigue for a few hours decompressing. It’s the same thing with my job(s) and why I avoid going to conferences or conventions. Even if covid wasn’t a thing, they still suck the life out of me and require a multi-day recovery period. Part of the reason I diligently mask and try to reduce my chances of catching covid is because if I got long-covid/a post viral illness, I would have even less spoons to go around, and I can’t imagine limiting my life more.

I’ve tried to organize my life in such a way that I’m expending as few extra spoons as I possibly can, so I can still do my writing and creative stuff and not be an overstimulated misery to deal with. It sucks though because I don’t think most people who casually know me would think of me as disabled or even autistic, and people with invisible disabilities or neurodivergence will always be held to impossible standards. They might be attainable for a time, but they aren’t something most of us can manage long-term without burning ourselves out. There is no way for me to have a standard neurotypical work-life balance without losing something, whether it be hobbies, socializing, chores, or my actual job. Something will always be falling to the wayside, and in neurotypical society’s eyes, I will always be failing.

For people where most of these things are near effortless or the effort is only required in short bursts, they will probably never understand how much I struggle and how little of a safety net there is. There are many reasons I support Universal Basic Income (UBI), but one of the main reasons is for when people who are ND or disabled burn out or need time to recover from a flare, they won’t be left destitute or having to keep working at seemingly 100% while actively hurting themselves. We live in a society that is very much all or nothing. If you aren’t disabled enough, you get zero benefits/support. If you are able bodied enough, there is no safety net. The best way to support your neurodivergent or chronically ill friends is to help them out when they need it (after asking, of course) and pressuring your government and politicians to expand things that actually help our society and those who need that extra help or safety net. Being able bodied is a temporary state for most people. Shaping our society to support rather than penalize a state most of us will end up in will benefit everyone.