Autism Awareness Day

It’s Autism Awareness Day. April is Autism Awareness month, but today is designated even more singly the “day.”

I don’t know where I land on this. Autism Awareness Day/Month is actually somewhat controversial in the autism community. Some feel that there shouldn’t be focused on “awareness” since it Autism isn’t a “disability” but a “difference.” Others, specifically are anti-Autism Speaks, which leads the awareness campaign.

I don’t know where I stand yet, because I’m newly aware that I’m part of the autism community. I’ve been an oblivious card-carrying member my whole life. It’ll take some time to fully settle in. At that point, I’ll be able to weigh in from a more informed manner.

Right now, I land in the middle, in some ill-defined gray zone. I tend to fight my tendency toward black-or-white thinking. A lot of things aren’t wholly good or bad. I can certainly think of plenty of things that are all bad: racism, homophobia, xenophobia, classism, abuse of any type, hate groups, torture, bullying, rape to name a few. Things that are completely good are equally easy to name: love, kindness, learning, compassion, acceptance, peace, etc. As I make these lists, I notice the first things that are coming to mind are intangibles. I’m not sure if this is because I don’t think many tangibles are either purely good or bad, or if it’s just a reflection of how my brain thinks

Anyhow, save for small collections of truly good or bad things, most things seem to have some qualities of each. A lot of times, my own ignorance imparts a pre-judgement bias but once I become informed, I find both sides have some salient points and also expose holes in the other seemingly “right” or “wrong” viewpoint.

I think autism awareness will continue to fall somewhere on the good/bad continuum. It may hover near one extreme, but I doubt it will be one of those truly good or bad things. Autism is now part of my identity and becoming a lens with which to better understand myself. Part of me is glad there is awareness because it may help with earlier and more accurate diagnosis, which could reduce some of the depression and pitfalls I’ve experienced due to lack of self-awareness, understanding, and tools to better facilitate my needs. I’m also glad there’s awareness so people think about differences and invisible battles that some face. Sometimes it is hard to exhibit compassion when someone looks fine and just seems like a weirdo or complainer or an annoyance. From the outside, we are often not privy to the inner struggles or even the “disabilities.” (not the autism is necessary a disability, but I’m speaking in general terms).

From what I know about Autism Speaks, I certainly understand the controversy and the resentment that many people in the autism community feel towards the organization. I feel like that’s also a topic I’m not yet informed enough to attempt to explain. I worry that the funds raised by Autism Speaks aren’t appropriated well and may even go toward research treading way too close to eugenics territory for my comfort and support. Instead of actively boycotting them yet, I personally choose to support alternative autism groups such as the AANE and ASAN.

So where do I end on all of this? I guess that right there is the point: I don’t know yet. I’m very glad for my own relatively recent autism diagnosis because it has increased my awareness about myself and has honestly begun to inform my mindset, decisions, and view of myself and my place in the world. I no longer feel like such a weirdo, an outsider, a mistake, a freak, a loner, an enigma, or worth less than others. I embrace my differences as simply that and look for ways in which I can feel better about myself and my life. I try to reflect on and understand my challenges, and in doing so, if I discover that there are steps I feel that I can take to ameliorate some of the pain or difficulty, I look to taking the steps. I’m also trying to connect more with people of all types, instead of isolating myself to hide my “weirdness.” We all have something positive to offer when we operate with integrity, compassion, and good intentions. How beautiful diversity really is. I don’t want to hide the various colors I bring to the vast and brilliant spectrum in our world. I want to boldly step out of the shadows and be my authentic self and enjoy the richness that I, and everyone around me, radiates when living with confidence, authenticity, and love.

Face-Planting

I face-planted today. I was at physical therapy trying to walk with an iWalk, and I literally toppled prone onto the floor like a stiff board. (I probably should have been in the parallel bars while testing it, right?)

Let me back up. I recently broke my foot and I’m to be non-weight bearing for 8 weeks while it heals. I’m on day 3. As an avid runner and someone whose coping mechanisms involve movement, this is not a brief nor welcome prognosis. I’m already falling off the rails a bit. Because of physical issues, I get injured a lot, but this is different because the world becomes much more limiting on crutches. So, the doctor suggested an iWalk. As I mentioned, I clam up and become nonverbal in appointments, so I was unable to ask any questions about this device. While I can certainly see how it would be a useful ambulation aid for most healthy adults who are able to balance, it could not be a more mismatched tool for my safe mobility. The Amber-iWalk incompatibility stems from three six crucial issues (all of which could have been addressed had I advocated for my needs and asked questions at my appointment!):

  1. Balance: you have to have normal to good balance to use this thing. Essentially, it’s like a prosthetic lower leg that sits on a small foot with a platform for the injured foot to remain perpendicular to the ground. Since the base of support is smaller than one’s normal foot, it’s hard to control. As I mentioned, one of the primary issues with sensory processing disorder (SPD) is significant difficulty with balance.
  2. Size: it’s meant for adults 4’10”-6’5″. While I do fall within this range, albeit close to the minimum, it’s still too big for me. We were unable to tighten the straps sufficiently around my leg without maxing out their available adjustments. The therapist tried sticking a towel in there to bulk up my dimensions, but the thing still kept rotating around my leg. That doesn’t work when you’re trying to control an artificial leg. Take it from me: I spent two years earning my MS in prosthetics & orthotics, a degree that I don’t use for my vocation, so I might as well apply it to my own life situations! Prostheses need to have as intimate of a fit as possibly for control and comfort. This loose fit resulted in a device that was neither comfortable nor well-controllable!
  3. Body control, kinesthetic awareness, and coordination: sensory processing disorder issues manifest in poor coordination, and proprioception, body control. I’m somewhere between a pinball and a snowball rolling down a big hill. The laws of inertia do not necessarily seem to apply to my movements. I tend to go faster and faster with unintentional reckless abandon once I get moving and I can’t seem to control the movement of my limbs or coordinate limbs and trunk. The one exception is running. Running seems to iron out my kinks and turn me into a relatively graceful, well-oiled, unified machine. It’s always been my magic.
  4. Lack of interoception: (so, I guess there’s another reason; this is now #6). I mentioned in my first post that I have difficulty with detecting and processing internal body signals like hunger, temperature regulation, and when I have to use the bathroom. Females, or anyone wanting to sit when using the bathroom, can’t really have the iWalk on. It doesn’t allow you to comfortably flex your knee and hip appropriately to squat down. It’s also not that easy or quick to remove. Therein lies the problem. The operating window of time that I usually have between realizing I need to use the bathroom and when I will start peeing hovers around 90 seconds to 2-minutes. This works well for someone who is home and can ambulated normally, but strap on a device that’s stubborn to remove, a broken foot, and a big open physical therapy gym with a long walk to the bathroom and you’ve got yourself a free two-minute slapstick comedy show. While everyone watched the panicked and desperate struggle of two PTAs and a tech careen my awkward gait like a baby giraffe, all the patients at their respective tables or exercise stations stopped and watched. Once inside the stall I yelled, “I made it!” Ah…why do I exacerbate mortifying situations? I hate when I get anxious and blurt stuff out.

After I face-planted trying to walk with the iWalk, I lay silently on the ground thinking to myself: Wow, can this be any harder?! I have all these challenges and pains and now my foot kills, I can’t run, I can’t even walk, and more and more is taken away from me like I’m on some sort of slippery slope to doom. Thankfully, the pity party of one lasted less than two seconds. I rolled onto my side and got up using my arms and my good leg in a strong single-leg squat before the PT was even able to catch up with me.

“I was going to help you up!” She exclaimed.

“I know, thanks. But when I fall, I get back up.”

And I do, and I will.

The iWalk is getting returned. Some tools are just not suited for a particular job. You wouldn’t use a staple gun to saw a board! It turns out my insurance immediately agreed that a knee scooter was medically necessary, given my risk factors with using the other standard devices and my injury. I’m sure that’ll be another adventure, but I’m up for it.

Just like the strong callus that forms over the fracture line of a healed broken bone, strengthening the new bone beyond that of the original bone, I become stronger where I was weakest. I fall and I rise up braver, tougher, wiser, and more determined. Sometimes it takes just a second or two; other times it has taken a couple of years, but I commit to myself that whatever is thrown at me, I will face, I will fight, and I will overcome.

 

Am I in a Wax Museum?

The emergence of my nonverbal behavior always frightens me. When my ability to verbally communicate is swallowed, I feel powerless. Our world is not set up to facilitate nonverbal communication. This makes me feel like I’m at a dead end when I’m in a situation where I’ve lost my voice.

Sometimes, I’m not even aware that this has happened. I just stare stunned, nearly catatonic, blinking, perhaps nodding (if I’m lucky), otherwise, just like a puppet crafted without a mouth. The world moves around me and I feel like I’m standing still, the central axis pole of a merry-go-round with all the people and horses, music and lights bobbing up and down with carefree purpose around me. Sometimes I just watch in awe, oblivious to my nonparticipation. Other times, I feel like I’m my own statue in a wax museum, standing in a soundproof glass case around the action. The walls are sometimes a one-way mirror: I know people can see me, but they can’t hear me; or other times, I feel like I see everything but I’m concealed to the masses.

When I’m aware that I’m in a nonverbal spell, I feel like a scared child. I want to tuck myself into a ball and be carried away by a parent to safety. I want to be hugged and shielded. I become afraid that I will not stand up for what I want, or especially for what I need. Perhaps it’s my trauma background, but I sometimes get anxious that I’ll agree to things I don’t want to do. I’m not specifically referring to physical/trauma things, but less severe things that I still don’t want to do. It’s happened before: I’ve silently agreed to job offers, plans or commitments with others, giving people things that I didn’t want to part with, helping people in situations that seemed unsafe because they asked for help. A small shrug or nod “yes” seems to be a defense mechanism when I’m stunned or overwhelmed and can’t talk, even when I don’t want to agree. Thankfully, doctors usually have their patients’ best interests in mind, so that’s not typically an issue there, but I don’t get my medical questions answered, which usually sets my already-pervasive anxiety into a consuming tailspin! But like I said, I can’t take steps forward if I don’t even know they need to be taken, so this is a good starting place. I am now operating from a place of increased awareness of this issue so I can begin trying to navigate these aphasiac spells with a game plan that makes sense, which will hopefully instill some much-needed confidence to handle normal activities like medical appointments.

 

 

The Weight of Waiting

I hate waiting. I especially hate waiting for doctors because I’m usually nervous for the appointment for one reason or another, yet I imagine I spend nearly a week of every year in cumulative minutes waiting for doctors. With my bevy of health issues and the frequency of appointments, I wish I could rack up frequent-waiter minutes for free copays at the very least. Although I’ve never administered any sort of global survey, I’m confident that no one likes waiting for doctors. Every appointment has at least a three-tier wait: the weeks or months you have to wait to actually get the appointment on the books, the initial waiting room once the appointment day has arrived, and then the wait in the room after they’ve narrowed down the field to the top three.

Sensory processing disorder carries with it a multiplicative factor that exponentially increases the pain of waiting. The close proximity to other patients gives me a headache. Invariably, some woman is wearing perfume or is reading a magazine that contains a fragrance sample that wafts out with every page flip. The lights are always fluorescent, which bothers my eyes, and they have a constant buzz, which drives my brain crazy. It’s becoming more and more common for offices to have a TV in the waiting room for the “comfort” of the waiting patients. They’re always either too loud, or more often, playing some emotionally disturbing video: at my latest appointment, there was a violent movie; before that, I was at an office with a dramatic soap opera, which stressed me out. And then I have that weird empathy issue (empathy issue): If other patients in the waiting room are displaying physical pain or discomfort, I feel it too. The minutes drag on while my body mounts a mirroring pain response, reflective of what I see around me. The temperature is never right. It seems like it’s one of either two extremes. I have very poor thermoregulation, so I arrive equipped with various layers so I can try to self-regulate, but I’m always under-prepared, as the thermostats in these places must be set outside of what I consider to be the plausible range.

After all the waiting, I finally get to see the provider or someone on staff. This is where “bizarre-o nonverbal Amber” decides to assert herself (which is ironic because in doing so, she prevents “normal Amber” from being assertive!). No matter how much rehearsing or memorizing I do, outlining or even scriptwriting I bring to reference, or how much I’ve had to say about my issue prior to the appointment, it’s like I’m suddenly just a nodding, shrugging, and otherwise single-word utterance speaker. I think the stress of the appointment, the sensory overload of waiting, the pressure when it’s finally time to talk swallows me in a wave of stage fright, and the concern that my problems will suck up too much of the doctor’s time (I hate to be the reason others have to wait even longer) all combine in the least helpful way and transform my typically communicative and expressive self into a shadow. I recently told my autism therapist this after she asked how a particular appointment that we had discussed and “prepared” for. The need for the appointment had come up in our discussions the few days before the appointment. I admitted to her that I was particularly nervous for this appointment but I was not sure why. After some probing and exploring, I admitted that I was nervous that I would fail to be as proactive and assertive at the appointment as I intended to be and that I’d be overly passive and quiet and my needs would end up not getting met. After all, I venture to guess that most doctors aren’t mind readers and as mentioned, most are very busy. They aren’t going to stand there waiting in silence for the patient to form some semblance of additional information to impart on the discussion!

It turns out that it’s actually somewhat common for normally verbal (or even loquacious!) autistic people to have periods or situations where they are rendered non-verbal for one reason or another. I had no idea. I’ve discussed, and fully admit, that even on my best days, I’m not the most effective oral communicator, but I can usually get some number of words out, save for times I’m particularly scared or anxious or shy. Well, now after tracking the pattern, I see this does not hold true for appointments, which is a shame because you really have to be proactive in our physical and mental healthcare system on this country to get the help you need. My therapist said to either bring written notes that I directly give to the nurse, PA, or physician or go with a companion (interpreter).

This experience and revelation about what happens once I finally get my window of time with the doctor has me considering if there are other regular situations in which my ability to speak becomes significantly reduced. In fact, I’ve already identified several other routine occurrences where “nonverbal Amber” takes to the director’s chair. One of the primary functions of this blog is to help me identify and understand my various challenges so I can try to work on them. This seems like a more superficial one to chip away at when I need a little break from the elbow grease demanded by some of the more critical and challenging issues. And hey, I already said I go to appointments all the time; I’ve got an endless number of opportunities to practice!

“YOUR Autistic”*

* Before I begin, I just want to note that I’m using some direct quotes from another person in this post that I disagree with content- and grammar-wise. Not that I don’t make plenty of my own grammatical errors, but I just want to set the record straight that I know the title of this post (and several other instances in here) are incorrectly written as “your” (or in her preferred style, “YOUR”) instead of “you’re.”

I have a short rant today. I’m a member of an online support group for adults on the spectrum (well, I’m a member of quite a few, but this story pertains to just one of these such groups). Unsurprisingly, none of us seem particularly well-versed or comfortable in casual conversation, so the group moderator, a licensed social worker who works with verbal adults on the spectrum, often poses a question so we have a launching point from which to form a discussion. Yesterday’s question centered around the challenges experienced for those of us in an ASD/neurotypical mixed relationship. It’s actually a great question with many varied responses and something that warrants further exploration and attention to explain, but that’s for another time.

What bothered me was that a neurotypical woman in the group (who has a husband on the spectrum) jumped in with her usual negativity and finger-pointing at the shortcomings of her husband with his “impossible ASD behaviors and impairments.” She further argued that it’s impossible (across the board) for mixed couples to be happily married and maintain a healthy, mutually-beneficial and enjoyable relationship. I wholeheartedly disagree. While my husband and I have had, and do have, our share of challenges, not all of them stem from differences in neurology, and even those that do are not insurmountable. Moreover, the reason she cited for saying that neurodiverse (mixed ASD/neurotypical) relationships are doomed to fail was that “autistics are unable to have any emotional awareness and desire to care for others.” This made my blood boil because not only do I disagree, but I also feel like attitude puts the onus of every relationship issue exclusively on the ASD partner. Instead of heeding to my normal passive, wallflower approach in an effort to prioritize avoiding conflict, I stuck my neck out to question her assertions and defend my viewpoint. I also asked her to explain what specific behaviors or issues her husband exhibits that she finds particularly offensive or incompatible with a successful mixed relationship.

My prediction was that I was possibly misunderstanding (since that is engrained in my psyche from frequently misinterpreting verbal and non-verbal communication as well as intentions and customary behaviors at large) and that after I probed with clarifying questions and tried to poke holes in her stated argument, she’d explain and soften her stance.

I was wrong! She jumped on my response and said, “Of course you’d think that aspies or autistics are capable of knowing their emotions and caring about someone else, YOUR [sic] autistic!” First of all, I don’t like the term “aspies,” and not only did I find this to be a pretty immature and finger-pointy response, but it also didn’t feel kind or respectful of my opinion and it didn’t answer my request for specific examples.

I didn’t respond.

About two hours later, she added, “If your [sic] impaired yourself, you won’t understand.”

That prompted me to again push myself out of my comfort zone and confront her. I said, “I wish you wouldn’t make such sweeping generalizations about the ability of neurodiverse people to be competent partners. I feel that it unfairly places limitations on what you actually are able to see in the capabilities of people on the spectrum because your mind is already closed to any possibility that perhaps some of us are able to be good partners.”

She replied that there is no need to keep an “open mind” when the “facts clearly point in one direction.”

The truth is that I have no idea what their relationship is actually like, what her husband’s strengths and weaknesses are, and what her past experiences and expectations of relationships are. However, I can only imagine that she may also be somewhat limited in her communicative abilities, her patience and understanding, and her ownership and self-responsibility of any issues in the relationship. She seemed to carry a “holier than thou” attitude and my concern is that that may blind her ability to look introspectively at how she might be contributing to relationship issues and similarly, her self-efficacy in improving any of those issues and shaping and guiding the relationship into the direction she so desires. Making blanket statements about an entire group of people (or type of neurology) is inherently flawed and I’m suspect of anyone’s position if it makes such gross generalizations in a black-and-white fashion. I can only hope that she was either having a bad day or coming to the forum on the tail end of a big argument and thus, blowing things in her relationship out of proportion (we’ve all been there!). I also hope that her husband is self-aware and cares for her emotions and needs, but that there is reciprocity in her participation as a partner.

It also made me acknowledge that I’d rather carry the challenges that I do with my “spectrum brain” and still be the best partner (and person) I can be despite those challenges than be neurotypical and perhaps a “better” partner on paper, but lacking the awareness, interest, or diligence of being my best self. No one is perfect. No relationship is perfect, but I certainly don’t think that neurodiverse couples can’t be mutually happy in a healthy relationship. I also think that the first step in being in a positive relationship is reflecting on your own weaknesses and role in any observed problems and working to improve those. If you’re having trouble identifying these, it is likely that your partner can fill you in! It is never the wrong time to admit that you have things to work on and dedicate some attention and thought into self-improvement. One last thing and something I’m personally working on is having the courage to stand up for what you think is right, despite discomfort, especially when something poses a conflict with your morals or the rights and respect for other people.

Reframing

One of my primary goals and purposes for this blog is to establish the discipline of writing somewhat frequently. I have left the “guidelines” for myself very loose and broad so as not to constrain myself unnecessarily. I don’t have a particular agenda or “approved topics.” What I have found over the years is that through the process of writing, my thoughts and emotions become clearer to me and I can reflect on things more productively and from a more informed and self-aware place. There are almost always quite a few things going on in my brain simultaneously and writing has proven to be a useful vehicle to sort and understand these thoughts.

The following is also an example of something I am trying to task myself with through this practice. Yesterday morning, I wrote the first part about the sensory challenges with snow and my resultant hatred for it. After getting my ideas down on “paper” (read: cellphone screen at 3:30am), I left it at that. Twenty-four hours later, I find that I have a more positive spin on it and I’m disgusted by my whining over something so minor in the grand scheme of things. While I’d like to just erase the whole thing and pretend it never happened, the purpose of my blog is not to come across to myself (or anyone who reads it) as someone who always makes lemonade out of lemons, always shows my “good side,” and doesn’t sweat the small stuff. That’s not me in reality and I therefore, that’s not me in the blog. My single blog guideline is to always be authentic. It can be humbling to read some of your thoughts in the not-so-perfect, far-from-golden moments. It also presents the opportunity to reframe the negative mindset and try to re-approach from a new perspective. While this doesn’t always happen, in this particular instance, just letting the thoughts marinate for a day allowed me the pause I needed to grow a tiny bit more in the direction I expect and desire for myself.

 

3/15

I hate snow. In fact, I can’t remember a time that I liked it, even as a little kid. I can’t stand feeling wet and cold and I have Raynaud’s, so my fingers and toes morph into icy, numb, white, functionless digits once temperatures dip below about 50! Suddenly, I can’t manipulate my hands into any useful conformation and I no longer have any proprioception in my feet. I have no idea where they are below my body, which causes trips and faceplants. It’s the other sensory factors that make snow offensive to my system as well. It’s too loud. While rain is too loud as it’s actually precipitating, and it’s too loud as it mixes with tires into some cacophony of road noise, snow also has a loud soundtrack. Walking through snow, like leaves, is too crunchy. Every single step (in a rhythmic, repetitive way) barks uncomfortably loud to me. That’s the thing about repetitive noises. By the nature of being repetitive, the volume is typically constant, but when you have sensory processing issues, each individual occurrence of the sound mounts on the previous one in a summative fashion, crescendoing into an intolerable mess. For this reason, quiet and gentle snow can also be loud. The irony isn’t lost on me. Snow has a hushed whistling noise as it falls. Flakes with more crystallized water are denser and make a shimmering sound. I have to wear ear plugs under headphones but this does nothing to help muffle the sound of my own “warm” coat bending and swishing. Looking at snow hurts my eyes, not in the put-on-sunglasses-to-block-the-glare kind of way, but in the it’s-too-white-my-brain-is-overloaded way. Here in New England, we have a lot of gray winter skies, days where the cloud cover is so thick that you wouldn’t be able to point to the approximate location of the sun unless you know the time. The sky blends with the old piles of snow, which blend with the gray houses. It’s like an artist commissioned to produce an oil pastel rendering of the landscape takes a couple of colors of gray and then artistically swirls them together with his or her fingers into and indiscernible, abstract piece. My brain doesn’t know what to do with so much white, so much sameness, so instead, it renders itself into a knotted headache. I normally thrive when I’m outside. I have compared myself to a plant before. Scientists say that we are 90% bacterial cells and only 10% human cells. I don’t know if it’s because I am vegan or this is more of an any calls on or this is more of an “n=1: I-am-Amber” situation, but I must be the anomaly at 60% bacteria, 38% plant, 2% human. After all, there have been many moments of differentness and loneliness where I wonder if I am even human at all!

Anyway, being outside recharges my battery. Although I’m not convinced I have actual chloroplasts, perhaps my mitochondria have learned to photosynthesize, as I am confident that my body derives energy from the Sun. I have to consciously pull myself inside to get things done. The winter is a different story. The snow surrounds me like a suffocating blanket. A heaviness sets in as I clomp and stomp in noisy boots down the slippery street, eagerly awaiting the end of the walk. When I do get back inside and remove all my wet and cold layers, my skin hurts from the feeling of the materials, my ears are throbbing like I went to a rock concert, and my eyes ache. I have to decompress from the decompressing walk.

 

3/16

Snow isn’t all bad. As Kevin O’Leary from ABC’s Shark Tank (or the superior Canadian Dragon’s Den) would say, it’s really “a nothing burger” in the grand scheme of things, even in the tiny scheme of just my own life. I, and everyone else, has far more serious problems. I can’t control how snow offends my physical body with SPD, I can control my reaction to it. I can choose to not let it bother me so much and to recognize some of its “beauty.” Although I find the individual flakes somewhat magical, and I enjoy studying the for the fleeting moments they persist inside under my microscope, I still don’t find the snow in aggregate to be “beautiful.” People around me say, “Wow, doesn’t it look so beautiful with all the snow today?” I just think to myself, is it my eyes? My different brain? I think it looks so ugly!

So, clearly, I have a long way to go in terms of seeing its beauty at face value but I do find some of snow’s dull grayness has been painted over into a silver lining. I got to spend more time with Ben and any extra time with him is blessing I want to recognize and not take for granted. And hey, we are past the Ides of March. This will melt. My headache will subside. Spring will come.

 

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.