Bending Won’t Break Me

I’m about as far as one can get from being spontaneous. I often refer to myself as “robotic” in that I do the same thing at nearly the exact same time every day under my own volition. My job is flexible, I don’t have kids, and I theoretically can schedule my time as I so please and so I do: I choose routine. Even my weekends are quite regimented and look remarkably similar from one to the next.

Routine makes me feel calm. It gives me something concrete to count on, something stable in my seemingly unstable mind and in the confusing, overwhelming world around me. I’ve always loved routine and the stability of a schedule, and I think that’s fairly common for people on the spectrum. Change, even switching tasks between things I enjoy, is very stressful and anxiety-provoking for me; it causes irritability, headaches, and even meltdowns. However, it’s grown from enjoying and abiding by a routine in a (mostly) healthy and organic fashion, to clinging so tightly to one that it feels like a clinical disorder. On the day I was attacked, I was doing something out of my norm, attempting to surprise my husband by doing a bunch of extra chores so that we wouldn’t need to on the weekend, freeing up time for something more fun. I think this fact, combined with the fact that I have since become very cautious and calculated, has exacerbated this limited capacity for spontaneity. I feel simultaneously pacified by my strict, predictable schedule and trapped by my grip to routine and inflexibility. I want to be able to deviate more easily and comfortably. I want to jump on spontaneous plans and fly by the seat of my pants, so to speak. I want to be the fun, adventurous wife who plans a last-minute outing on a Friday night, surprising my husband with some sort of wild date night rather than predictable pattern of comfort (not that we don’t have fun, it’s just it’s always a predictable kind of thing).

Today, I pushed myself. Instead of my usual engagement at 12:30pm on a Sunday of doing work for school, I announced that I wanted to go to the Spring Bulb show at Lyman Plant House and Conservatory at Smith College. My husband, understandably shocked by this suggestion, was happy to go, and, bless his heart, is always able to get ready quick enough that I don’t lose my drive.

The Bulb Show itself was great. There’s nothing like a whiff of spring on a 10-degree day to help you feel less irritable. I always enjoy looking at flowers and examining their structures for patterns in the leaves and petals. Nature crafts the most beautiful and perfect rhythms in its structures. I also got to see my family and talk about real stuff in our lives that matters. I spent quality time driving there and back with my husband. These last two things were the real benefits. Mostly though, I felt proud of myself for being flexible and doing something different at the last moment. I’m now trying to live my life in such a way that I seize chances to make lasting memories and grow individually and together with the people I love. It’s easier for me to stay at home and do what I know makes me happy and feels safe but it’s more enriching to stretch out of that comfort bubble and capitalize on the opportunities around me to foster my relationships, engage in activities, and build new experiences. I want to learn to grip a little less tightly to the things that I cling to. In the letting go, we open spaces to allow more happiness, connection, and meaning to enter and fill our lives.

 

Gradual Germination

 I have a lot of difficulty sleeping. It’s never easy to fall asleep and staying asleep is a nightmare (pun intended), as I am plagued with terribly violent dreams from my PTSD. My doctor has also told me that people on the spectrum often have symptoms of insomnia because of the sensory problems as well as from disruptions in melatonin and one’s circadian rhythm.

Sensory processing problems, for me at least, do seem to peak at nighttime. I think this is largely because they tend to build over the course of the day, like a crescendo in a musical piece that finally breaks into the final cord (or some sort of sensory overload meltdown) at night. I end the vast majority of my days with a terrible headache. My tolerance for sensory stimuli is completely exhausted by 5:00pm. Even a tiny sound—a gust of wind at the window, breathing, my own audible heartbeat against the mattress—drives me bananas. These sounds amplify with each passing second. An uneven whir of the fan (the infamous “pulsing” as it’s known in our home) is my nemesis, its rhythm paving paths of irritation on my cortex. I hate the slightest flicker of light; my poor husband fumbles around in the dark trying to get things. Even his cellphone glow (and he has the old, pre-smartphone type with a tiny screen!) bothers me.  My skin is the worst offender. I won’t even get into that right now because my intention for this post is rapidly getting buried among my sensory complaints!

Needless to say, I employ a strategically designed, carefully rehearsed sleep routine every single night, with the goal of “optimizing sleep hygiene” for better rest. Still, it’s far from good sleep and even further from flawless, which is why I find myself up every morning between 2:40 and 3:40am with a mind that is ready to start the day. As for my body, sometimes it leads the charge and is raring to go, while other times it feels as it should at 2:40am: like cement has encased it.

The other morning, I came down to find the flower pictured in this post in its full blooming glory. The bulb was gifted to me by my mother-in-law for Christmas. While I love flowers, plants, trees, and gardening, I am quite far from having that coveted “green thumb.” Historically, it seems like all my stuff initially grows and then, suddenly, completely succumbs to some sort of dramatic death. (To be fair, that was usually in the mouth of our curious Siamese cat growing up, who seemed to have a constant hankering for my “experiments” growing beans, seeds, and even moldy bread for a Girl Scout badge!)

Anyway, I stuck the bulb in the little pot, plunged it in the provided soil cake, watered it once, and put it on the shelf behind the TV. Oh, but she grew!

Without water for 9 weeks (only the initial wetting of the soil cake), without adequate light, without the TLC my plant deserved, she blossomed. My point in sharing this seemingly boring story is to make an analogy. Even though it’s hardly debatable that I deprived my plant from the things it needed, it survived. It thrived, in fact! The plant had everything it needed inside of its cells. It grew strong roots that are wildly trying to escape their plastic cage; it grew a tall, thick, luscious stem with healthy leaves; and deep vibrant red flowers with silky petals. Had I provided more water and light, I imagine it may have been an easier journey towards maturation, and perhaps today’s growth state would have been reached sooner. However, for nine quiet weeks, my plant used its own resources to figure out how to not only survive, but to thrive and express its beauty. We are much the same way. All of us have an incredible internal strength, a resilience to grow and succeed even if the stakes are against us, even when society, science, health, etc. appear unfavorable for us to prevail. Much like the plant, while there may be an optimal environment or helpful constituents for our survival, we carry within the knowledge, the power, the awareness of our needs, and the drive to grow into strong individuals.

Sometimes situations don’t feel fair. We look to blame luck, “God,” society, etc., and frankly, I think a lot of situations in our world aren’t fair (too many to name), but my hope is that we can all be like my plant, able to persist, so that someday, when it’s least expected, there is something beautiful that we are quietly (or boldly) projecting and breathing into the spaces around us. While we toil away and face challenges and pain, we are laying each strong cell in a calculated and purposeful arrangement, ripe with fortitude and care, into a structure—a life—that has meaning and value.

 

 

Oh, and I do plan to water this plant! Just because she can survive on her own, doesn’t mean she should have to. Be someone’s light and water: loving and supporting someone is never the wrong choice.

 

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.