The Slow Leak

Navigating through a “normal” day is completely exhausting, and often a losing battle, for those of us on the spectrum. The sensory bombardment of commonplace stimuli is like a full-on physical and mental assault. The energy and effort to be social and observant of social interactions and then “act the role” is like a constant game of mental chess, necessitating careful calculating, analyzing, and emulating catalogued behaviors. Tasks that should be simple can be monumental undertakings: getting gas, grocery shopping, lunch with a friend in a bustling cafe, a medical appointment. Mundane, unremarkable, or even calming situations for neurotypicals can, for autistic individuals, completely overwhelm the thalamus—the brain region that processes sensory signals. As a result, the thalamus sends dire fight-or-flight signals to the amygdala, which interprets the sensory overload as a threatening and fatiguing situation. The body is under a constant state of perceived stress and imminent danger, as if prepping to run from an oncoming lion attack, only there’s no lion: it’s just a quick trip into the post office to mail a package.

Lights, noise, temperature variations between indoors and out, smells of perfumes or cheap plastic products are all summative offenders so that by the time 2:00 or 3:00pm rolls around, I’m relegated to a limp sprawl on the couch with dark curtains drawn and soft blankets around me to decompress from the day. Sometimes I can’t even talk, I can’t tolerate noise, and my skin feels so irritated that my own seamless clothing feels like it’s digging its invisible nails into each sensitive inch of my body.

I equate this daily drain to riding a bike on a trail studded with broken glass and rusty nails. With the exception of the hazardous topography, the path is beautiful and goes exactly where I need and want to venture. It feels nice to be out and about, attempting to enjoy the environment and interact in a normal way, but suddenly, I get a flat tire—a sensory or social intense effort for my brain to process, assimilate, and handle. With a sufficient break and the employment of sensory toolkit strategies, I can recover enough to reset the cognitive madness back closer to baseline. This is analogous to pulling over, getting out my spare inner tube, and repairing the tire enough to keep going along the path. This time, instead of covering a decent distance before an issue, with just a few smooth pedal strokes, yet again, my tire springs a leak. Perhaps it’s even the other tire now—the back wheel—which is more difficult to change. Either way, the second puncture was inevitable given the surface I’m traveling on. Now, I’m out of spares. I do have a patch kit and a couple of CO2 cartridges, so I remove the wheel, pry the rusty nail out of the rubber (like removing myself from the exhausting sensory or social onslaught) and glue a patch on, inflate the tire (to try to relax and rejuvenate), and get on with my ride. However, now I am relying on the weakened equipment. Within just a few seconds, my tire has sprung yet another leak.

And so it continues. I can keep trying to cobble things together enough to ride, but eventually I will run out of patches and the possible cycling bouts between subsequent deflations become increasingly short. Eventually, my tire has so many holes that it remains flat, no matter how much I try to pump it up. The only solution is to get off the hazardous path: retreat to the comfort and sensory and social safety of home. I’m done for the day and I have to cancel any afternoon or evening plans. I just can’t get there. I won’t be able to repair enough to handle it. After all, I now need to buy a whole new tire at the bike shop and even get my rim repaired; riding on the flat tire too long damaged my bike. They have to work on my bike, order a new wheel all together, and it may be a few days until I’m able to get back on the bike. In fact, this is the reality of the magnitude of the impact of autism and sensory fatigue on my stamina and my ability to function. It can take days to recover from seemingly typical and casual encounters. I become a hermit as my body suddenly feels it must go into survival mode and conserve all physical and mental efforts to recuperate.

To extend the biking analogy, after my failure on the path, I try to research more well-maintained paths (places that are less overwhelming or social engagements that are less taxing) while I lie at home in the self-inflicted isolation and exclusion from society around me in order to heal. I find that, yes, there are some paths touted to have somewhat superior surfaces (perhaps stores that are more sensory-friendly, friends that are willing to just meet for a short mid-morning walk in the park, or ways to avoid doing errands all together by ordering online). Such paths are reported to “only” have shards of glass (but no rusty nails!), which is certainly an improvement, but obviously still damaging. What’s more, these routes cannot replace my desire to ride on the main beautiful path, which is the sole option to travel in the direction of my desires and interact with the world in the way that those around me whom I love and would like to join are gliding along with puncture-proof Teflon tires.

The First Step

I’ve been diagnosed and labeled with all sorts of things in my life, spanning the full gamut of medical and mental health issues, and while most transitions in my life seemed to bring about a host of new symptoms and resultant diagnoses, nothing really tied the whole picture together. Nothing ever truly explained why I felt so different, so off, and so close yet so far from everyone and everything I wanted to be. The one consistent thing in my life seemed to be the fact that I struggled with things that other people didn’t seem to struggle with and that I also didn’t know how to articulate these challenges. The irony was, for a person who is exceptionally gifted at finding patterns, I saw no method in the madness, no similarity in the symptoms and difficulties, and no way to predict or understand when something was going to be tough for me.

It wasn’t until early summer of last year, just before turning 30, that the pieces finally came together: I was diagnosed with autism. I, like many, received what they consider “a late diagnosis,” which is particularly common in women because of both a lack of understanding in terms of the presentation of autism in women, leading practitioners to miss the diagnosis, and to our uncanny ability to camouflage amongst neurotypicals by learning and emulating their behavior. (We are good at memorizing patterns (even in social behavior), perhaps to our detriment!)

For me, autism explains so much. It’s funny, because I think one of the symbols used by the autism community is the puzzle piece and although I don’t know much about this, I do know that for me, receiving this diagnosis was like finding that puzzle piece (or two) that slipped under the rug and finally fills the blatant gap in the middle of what should be a complete picture. In my own ignorance, I had no idea what autism was really like, especially in women, for which it can be quite different than media portrayals (think “Rain Man”…I’m nothing like that!).

For most of my life, I feel like I’ve lived two lives that are concurrent but not parallel. They bump into one another, they pull and push, they fight me for dominant expression because in any given moment, only one really gets to show its face. I have the life that I try to live externally: Here, I am a student of the world. I constantly observe, catalog data, categorize, and try to present myself the way I see in those around me. I carry on conversations by learning what to say, I go out, I laugh, I try to join activities, I work. This life exhausts me because it’s foreign to me. It’s a constant game of trying to understand, of calculating, of interpreting. It is somewhat like playing a character. It’s stressful because there is always the risk of messing up, which could open the windows for the other part of me to come out, to expose my weirdness. It wipes me out so much that prolonged periods of such behavior caused doctors to be concerned about my physical health: was it chronic fatigue, lupus, another underlying autoimmune issue? The other part of me looks just like everyone else at first glance. But I’m different. This part of me can’t stand the feeling of socks, tags, certain shoes, or seams so much so that it causes vomiting. It prevents me from tolerating things touching my skin in certain ways. I can’t wear my hair down and people call me a tomboy. Some people who have known me for 10 or 20 years have never seen my hair down. This part of me can’t take noises, especially repetitive ones. I can’t tolerate certain food textures without gagging, and while in full disclosure I did have an eating disorder as a teenager, I have since learned this is unfortunately common for women on the spectrum for a host of reasons, one of which I imagine is sensory-based. My list of sensory issues is so vast that it could be its own tome, but I will just say, for me at least, it is the most difficult part of my autism. In addition to affecting the five senses everyone thinks about, it also impacts proprioception, vestibular function, and what is known as interoception (the ability to sense internal stimuli such as hunger, body temperature, the need to use the bathroom, etc.). The sensory processing challenges of autism make it hard to be comfortable in my own skin, in the “comfort” of my own home where we can control the environment as much as possible. The real world? That’s a minefield of sensory bombardment; it’s one of the main reasons pretending to be normal is so exhausting.

The sensory challenges aren’t the only difficulties that the “real me” faces, and I’ll go into these more classic ASD-related difficulties another time, I imagine. The sad truth is that women, particularly undiagnosed, on the spectrum are at risk for various comorbidities like major depressive disorder, eating disorders, sexual assault, among others. Unfortunately, all of these have applied to me and I suffer the consequences of them today. While I could get into each of them separately and maybe will eventually, I share this because it’s one of the main reasons I’m choosing to speak up about my autism. Yes, it’s true that people on the spectrum (and people who aren’t) have lots of wonderful gifts. And yes, it’s true that we can blend in very well and “act normal,” evade diagnosis, and “be successful” in work, relationships, and life. But it’s also true that autism isn’t a minor challenge. It’s a real diagnosis that indicates a difference in the brain. Our brains aren’t worse, they aren’t better, but they are different. The issue with late diagnosis is that it further engrains the feeling of “differentness,” of confusion, and can exacerbate the challenges of the “disorder.”

My feelings of weirdness, loneliness, and a lack of belonging and understanding myself has caused major self-esteem issues and depression, so much so that at times in my life, I’ve been heavily medicated and suicidal. My inability to sense danger and to read people well likely contributed to my attack. That single day saddled me with what I will honestly admit is pretty debilitating PTSD. While I’m doing a lot better since that trauma in many ways, quite frankly, I have no confidence it won’t happen again unless I avoid people, which I don’t want to do. Had I known I was autistic younger, I may have devoted more attention and invoked more specific training to understand predators or at least how to defend myself. If nothing else, it may have alleviated some of the blame I put upon myself for so long.

I want to make it clear that I’m not bitter or upset that I wasn’t diagnosed earlier. I don’t blame all my weaknesses, challenges, and poor choices on being autistic. Receiving the proper diagnosis, even if “late,” simply provides more clarity for which to understand myself and learn to cope better, love myself more, be a better partner and friend, feel healthier, recognize red flags or challenges before they derail me, and feel less alone and confused. The day you stop learning and growing is the day you stop living. My goal is to begin to embrace who I am, to get to know myself better, to let others into my world a bit more, and to do my piece by opening up a little so that more people are aware of the tribe of autistic women. My hope is that increasing awareness will bring earlier diagnosis and possibly prevent some of the battles I faced for younger girls on the spectrum. An autism diagnosis doesn’t guarantee the struggles I have, it doesn’t justify my mistakes or shortcomings, but it is a bit like finally getting glasses when you’ve been squinting, stumbling around, and seeing everything blurry for years. I guess this analogy is particularly apropos for me: I just got glasses! So, to each person that reads this, whether I know you or not, thank you for your time, your interest in this topic, and for helping me start this discussion. Please connect and question me in any way that feels right to you. We are all at different parts of our journeys and in different paths but ultimately, we all, I hope, are just trying to do our best.