Time

The weeks are starting to feel faster. A couple of months ago, on Sunday night, I’d start to get anxious about the impending week and how it would feel long, hard, and lonely. Then, I’d start to get anxious Sunday afternoon in anticipation of the Sunday evening routine and the impossible-to-ignore awareness that the weekend was almost over and the week would soon be upon us. Unlike some people, this dread isn’t about working or not liking my job; in fact, I’m blessed to love my job and I work some on weekends anyway, so weekends and weekdays are often not appreciably different in that way. Mostly, I think, I’d feel sad about being alone so long during each day, not getting a chance to see Ben, and fending off physical pain and depression in isolation.

I’m not so much feeling that way recently, which is a welcome development. I still cherish the weekend time and enjoy the companionship and the more relaxed vibe that characterizes our weekends together, but I’m doing better alone as well. I’d say the pleasant spring and summer weather is the main attributable factor: I’m so much happier when I’m not freezing and there is abundant sunshine to soak up outside. Although not wholly healed, my foot is also better, restoring much of my significantly compromised mobility from the end of the winter and the early spring. Both of these factors result in more outdoor time, which almost always mitigates my anxiety and lifts my mood. If I am completely immobile or stuck inside for weeks or months on end with injury or illness, one of my necessary “tools” to moderate my mental health is missing and so I feel unequipped and justifiably anxious that I won’t be able to handle it well. It’s somewhat like repairman being stripped of her ratchet set or drill but still getting called to a job. She knows she can improvise somewhat, but without some key tools, she would feel nervous and more doubtful of her command over the repair. Give her those tools back, and she’s ready to effectuate the repair with confidence.

In addition to improved weather, less foot pain, and more mobility, I’m excited about my life right now. This may be the first time I’ve truly felt this way in almost a year, when I decided to forego the prosthetics residency and found a job that suited me well. It’s a beautiful thing when, despite numerous and pervasive challenges, you can feel content, and even sparked by your everyday life. The addition of this new job, though undeniably adding responsibility and some amount of stress, is invigorating. I really like what I’m doing and who I’m working with so far and it’s a near-perfect complement to my other job in terms of its different demands, purpose, and focus. I can’t wait to learn more each day and discover ways that I can be helpful and fill obvious and also unanticipated voids and needs.

I’m also continuing to find satisfaction and better self-understanding and self-compassion through my journaling and blogging. Writing gives me time to think, grieve, appreciate, analyze, strategize, and inspire. It helps me dissect and digest some of the many thoughts and emotions swirling about my head on any given day, and it helps me connect with myself and the world. I write about being autistic, having sensory issues, trauma and PTSD, depression and anxiety and physical pain, but also I write about being human and my life and the world through my lenses. As much as I feel different and am different than most people in very obvious ways, it also helps me feel the same and understood, especially when others can relate to my experiences or challenges. I get brief tastes of being as human as I actually am, yet often fail to see from my mental space of “freakishness” and deep, almost metaphysical, loneliness.

Although my progress is never linear and these improvements don’t always feel relevant each day, it’s useful when I do recognize the trend has changed for the positive. Although that familiar swing of anxiety may catch me on Sunday night, I just need to remind myself that the week is really nothing to fear: not only am I fairly equipped to handle it and grow with it, I may even enjoy it.

 

“Are you mad at me or something?”

“Are you mad at me or something?”

This is a question I’ve rarely, if ever, needed to pose to a doctor, until today. After months of waiting, I finally got to see a new primary care doctor since my doctor, although fantastic, is too far away now that we have moved. There is a saying about how all good things are worth waiting for but today certainly proves that the contrapositive is not true. This doctor spoke to me as if I was a defendant in a lengthy trial for an especially despicable crime. Granted, I struggle to accurately read tone, but my guess is that nine out of ten patients would have felt equally criticized, judged, and made to feel ashamed. For example, consider the following two questions with identical verbiage but different stresses, which, in my opinion, are received very differently:

  1. “So all these people in your family have some anxiety and depression? Wow.” (And imagine that transmitted with a “something is gross” look on the speaker’s face).
  2. “So, all these people in your family have some anxiety and depression. Wow.Wow is not needed and comes across poorly—like you’re unbelievable or some awful and freaky anomaly.

Depression and anxiety often have a genetic component anyway, so nothing about it should be “wow.” I was also told that metal health was not going to be discussed: too bad because that’s one of the two chief complaints I put under “what brings you here today.”

After I asked her if she was mad at me, without looking up from her notes said, “No. I don’t know you.” She continued to make notes. The words hung on the thickness of the humid air, painfully slow to dissipate.

“Oh, because you seem to hate me or something,” I added, as a way to justify my question.

Nothing. Then, eventually, “No. I have never met you.”

True, but it did not really address my impression and concern.

I desperately don’t want to go back there but I’m not sure where else to go. I’ve also heard that one of the doctors in the practice is supposedly very nice, so I want to switch but I’m not sure if I can and I feel too shy to ask. Sometimes I need a few days to bounce back and get the gumption to take the troubleshoot and take the next step. For now, it’s too raw and upsetting. Nothing got accomplished at the appointment and now, after months of waiting, I probably have to start a new search wait all over again.

 

Is Saying Hello a Lost Art?

For the most part, I am diligent about greeting other people that I pass while on the street or otherwise out and about. It’s not my nature to be extroverted and I certainly don’t exude a gregarious vibe, but this seems to be the polite thing to do. Yet, more and more, I find myself in the position to ask myself: Why do some people refuse to say hi or acknowledge the presence of another human? As an autistic adult—a model specimen of the extent to which people can be introverted and completely uninterested in small talk or interacting with strangers—this social behavior is particularly baffling to me. Within such socially-inept shoes, it’s hard to imagine how someone could be less “friendly” and commit a more fundamental social faux pas. These individuals who seem so committed to ignoring me may also be on the spectrum, but statistically speaking, it’s rather unlikely. I’m also not referring to one-off encounters with random passersby, but rather people I have not formally met but with whom I cross paths habitually over many months. For example, there were three people in my old neighborhood in Connecticut who refused to wave, nod, smile back, or otherwise commit to any semblance of recognizing my presence. I’d pass each of these neighbors individually, nearly every single day (literally over 300 times a year!) on my daily runs or walks while they were also on theirs. Particularly because it was often pre-dawn hours or contending with winter elements, I felt we shared a kinship in addition to the narrow roads.

My first instinct is to also ignore the oncoming pedestrian, but I’ve learned that it’s more socially acceptable and appreciated to greet the other with a simple nod, greeting hand gesture, or vocalized hello, and so I’ve conditioned myself to do so. I also would understand the situation more if I rarely saw these people or if they may not have heard or seen my acknowledgement, but I’m positive they hear and see me, especially because the more times they ignore me, the louder and more dramatic my gestures become. It’s not antagonistic or even necessarily conscious, but it seems to be my desperate attempt to have my friendliness reciprocated. The more I’m ignored, the greater my unconscious drive to convert them into a fellow greeter. With one male runner, my own feeble attempts to crack his icy exterior resulted in embarrassingly animated good mornings that even I tried to stifle. It seemed untamable. A simple smile and nod cascaded over time into a double handed frantic wiper motion and a boisterous “goooood morning!” In hindsight, my overcompensation probably smothered any hope of reciprocity but I not only seemed unable to let go of the fact that he refused to say hi, but I seemed powerless over my escalating response. This pattern played out with the two other avoidant individuals. Eventually, two of them caved: I was able to rouse a little smile and occasional hand raise (without permitting herself to hinge the hand at the wrist to wave) from one woman and the unfriendly runner also would pant out a hi or wave. The other guy was resolute in his refusal.

I think it felt worse and more confusing in this prior neighborhood because I lived in the middle of nowhere and only saw five people regularly on the roads, so to be snuffed by three of them stacked the odds against me and made me feel even weirder. I became the common denominator because what I noticed is that they often said hi to each other or other neighbors who happened to be out in their driveways as these pedestrians passed; the only pedestrian they weren’t talking to was me. It’s not even like my hyperactive gestures preemptively gave away my oddities or social awkwardness. I stuck to one of the routine greetings for at least five months before things turned more severe. That’s some 150 days to establish a basic hello.

Now I live in the center of a busy town. It’s more excusable to ignore a friendly smile or wave and more likely that one is distracted by something else. It still happens here all the time, but I’m less inclined to take it personally. After all, maybe I am the one in the wrong or at least clinging to an extinct practice. Is basic social recognition of another human a dead or dying art? Should I also revert to my comfort zone, the neurological programming installed in my birth to ignore others? It’s easy to uninstall my “updated” program, which tried to emulate the social behavior of greeting someone and run the more compatible initial version. There’s no readily apparent guidebook on this. I even Googled it and came up with nothing. My low self-esteem is inclined to imagine there’s a caveat or asterisk aside wherever such rules are written that says something like “*void if encountering a weirdo or autistic person; they don’t need a hello.” Speaking as one, that should be rewritten if it does exist. Yes, I may naturally prefer to keep entirely to myself, but it’s healthy and fulfilling to feel accepted by others, blend in with the customs, and overcome massively introverted tendencies to politely engage with others.

Of note, I do find people with all types of readily-apparent differences and disabilities seem beyond eager to engage with or glom on to me, and I gladly return the enthusiasm, so I am at least approached by some. Clearly, I’ve got more observing and research to do here.

With sincerity, I’ve been practicing a host of smiles, nods, waves, and hellos in the mirror and aloud to myself at home. I’m trying to figure out if mine are on par with “normal” people’s and how to exude a more naturally-welcoming expression. Of course, with myself as the sole judge, I’m lacking in both the informed and unbiased domains, but it’s a start. The last few walks, I’ve tested my skills on my dog and tried to take note of which ones she seems to interpret as friendlier or more exciting, demonstrated through wagging, eye contact, or even jumping. Unfortunately, she’s also biased and uniformed because she seems to love everything I say to her and is raptured by all hand gestures, but at least it’s comforting to know I’ve got one beating heart that is guaranteed to appreciate my outreach! For now, I’ll continue observing the interactions between others within earshot and eyesight, I’ll practice my own social behavior, further investigate the norms and expectations, and fight my desire to revert back to ignoring everyone until I’m confident that’s the current trend. After all, I truly do want to be camouflaged among the masses as a warm, welcoming, and friendly human being.

Self-Disclosure Reluctance

I’ve had a couple of days to mull over my job interview and my reluctance to self-disclose my spectrum diagnosis. My husband probed me to consider why I had such a strong aversion to opening up about being autistic. “Your whole point on your blog is that it’s not something shameful that you need to hide,” he argued, which is true and a feeling I stand behind. However, due to the stark incompatibility between the nature of the position I was applying for and the prevailing stereotypes about autistic people, it felt too risky to divulge. Had I been interviewing for a position that was likely unaffected by assumed autistic weaknesses or one where typical traits would behoove one’s aptitude for the job, I likely would have been more inclined to be forthcoming. Unfortunately, this was far from the case in this situation and since it is a job I am actually interested in, the risk of misconceptions counting me out of consideration seemed much greater than the reward, which was simply the ease of sharing my diagnosis honestly and avoidance of the anxiety that ensues from needing to cover it up.

I’ve mentioned that I believe one of the hallmark symptoms that society associates with autism is a vehement lack of empathy and people skills. I wholeheartedly disagree with this stereotype and continue to find that the pendulum actually swings to the far opposite side of its empathy trajectory for myself and many of the autistic women I communicate with (I don’t know enough men to weigh in on this): we are often overly empathetic to the point of discomfort (I’ve written more about this here). That said, one of the reasons this stereotype prevails is that it used to be a deficit included in the traditional diagnostic criteria.

Lacking empathy doesn’t bode well for a position in the customer service industry or for any position that involves interacting with or caring for people. A potential employer may not be aware that being on the autism spectrum doesn’t automatically mean the candidate lacks empathy, is an ineffective communicator, and will not be able to show compassion and understanding toward customers or other employees. While the employer may know someone on the spectrum whose presentation contradicts these assumed deficits, it’s less probable than the likelihood that he or she does not. Again, had I been applying for a job that required meticulous fact-checking or number crunching, it would have been a different story and I would have felt freer to disclose without incurring undesirable fallout. Autistic individuals aren’t generally thought of as people persons so a position that requires this aptitude at the forefront would not be selected as the best fit. In a pool of other qualified applicants, an autistic person carries the stigma of a significant disadvantage and would likely be immediately rejected unless there was some coveted skill or otherwise notable advantageous aspect to their candidacy. Such standout benefits and accolades do not apply to me or my application. I’m qualified and a good worker, but it’s unlikely that I’m more so than anyone else. The irony is that I am great at delivering customer service aligned with the mission and values of a company with timeliness and care. While I’m not ashamed to admit I’m a terrible communicator in many regards (particularly as it pertains to social chitchat and interpreting the meaning of verbal and nonverbal messages within their context), I’m quite adept at professional communication and adhering to and mimicking the “voice” of a company, which enables me to interact in a manner consistent with the tone and message of a company in a clear and compassionate fashion. This is one skill I’ve honed over years of dedicated observation and practice; I’ve memorized rules, patterns, and expectations surrounding the language and structure of cordial professional communication. Equally important, I’ve learned to recognize or anticipate when I need help with a necessary interaction; I’m not afraid to reach out when the situation confuses me or necessitates guidance.

All this said, disclosing my autistic diagnosis felt unnecessarily risky and likely to compromise my chances at landing the position I really wanted. It seemed the justification and explanation requisite to dispelling the myths and stereotypes associated with autism to defend my qualification would be far too extensive than the video interview warranted. Like opening a can of worms, it would usher in a lengthy discussion that just felt overwhelming.

I don’t know if I’ll get the job or not. Likewise, I won’t know if failing to disclose will have affected the outcome. In this particular situation, I do have the hunch that the employer seemed to know I was on the spectrum or that there was something “different” about me. Whether this was because he somehow was informed through careful research (my publicly-accessible information does not make it easy to deduce) or through my mannerisms or answers during our video chat, I also don’t know. There’s certainly a chance that he had no idea and I read into his question and ascribed this meaning, but the way he asked it felt otherwise. So, I will wait in hopeful anticipation and I will consider how forthcoming I want to be with my diagnosis in the future. In a perfect world, I’d self-disclose without fear of negative ramifications; we aren’t there yet and I’m not sure I’m always ready to be a trailblazer, at least not when I really want the job. I’m hoping to experiment in the future and gain confidence in owning who I am without undesirable consequences.  More importantly. I hope to dispel the myths of autistic character flaws by striving to embody the best qualities, address my weaknesses, hone my deficits into strengths, and live, work, and interact as the best version of my authentic self.

Interview

Interviews rarely scare me. I’ve applied for hundreds of jobs over my working lifetime and gone on dozens of interviews. This is not hyperbole. One could argue this has largely been a waste of time, and sometimes it has been, but it has also helped me amass a ton of experience answering and asking important questions and diffusing the nervousness inherent in such meetings. Most of the time, I feel so practiced and familiar with the questions because they are often predictable ones I’ve previously tackled. I seem to be diabolically self-aware: uncannily so in certain aspects of my life and beyond blind (if such a condition exists) in others. Luckily, the former tends to apply to employment-related screening questions. Akin to how I study, catalog, and memorize social behaviors and expectations, I readily store and retrieve informative and eloquent responses to questions I’ve previously encountered. Even under pressure, I can grab from memory and regurgitate an appropriate response. For this reason, interviews don’t rattle me. Usually.

Yesterday, was an exception. I was confidently navigating a video conference interview for an interesting part-time job I happened upon in my current job search. (Even though I have a job that I love, I usually keep my eyes out for appealing and potentially viable opportunities because I’m an independent contractor so one of the few downsides of my position is its lack of security.) The questions were clear and I answered them comfortably. Admittedly, I did have more anxiety surrounding this interview than normal because the employer is a professional I’ve looked up to for a long-time, unbeknownst to him. His work is iconic in his field and he’s as much of a celebrity to me as Brad Pitt or Jennifer Aniston is to most (or whomever is hot these days!). I’ve followed his work religiously over the years and so to actually connect one-on-one, even in interview style, felt like an amazing and exciting opportunity. Of course, he knows nothing of me because I have no measurable public persona or impact, and certainly not one that would have spread to him. After the initial fangirl nerves reflective of being in the (virtual) presence of my guru were swallowed, I felt giddy and lucky to have the time to connect. This excitement lent a palpable energy to the conversation and somewhat of a natural rapport was quickly established. I figured this would bode well for my candidacy for the position because I seemed engaged, attentive, and genuinely eager, which I absolutely am. Then, things rapidly veered South: an unprecedented question.

“Tell me one thing about you that I can’t get from your resume or cover letter?”

It seemed like a fair, and interesting question, but it caught me off-guard. While I had been all too quick to answer the other predictable questions rather expressively and confidently, I took my first long pause and inserted the time filler, “hmmm…good question…” then repeated it as if asking myself the same thing.

I knew what I wanted to say (perhaps the elephant in the room of being autistic or my crippling PTSD and anxiety?), but I felt that would instantly quell my chances at the position and was too complicated to divulge without ostensibly trying to defend myself as still a capable worker (it’s amazing how the prevailing opinion is that these “issues” would make me a subpar employee).

It may have been the pause, the flash of panic that graced my face, or some tell sign I obliviously revealed earlier in the interview, but in my pause, he added, “you know, anything personal like a challenge or condition you face or something you’ve learned about yourself.” Does he already know? Is he goading me to self-identify? I wondered.  My face instantly glowed a hot red, like when your using the Paint app and select the “fill” or “dump paint can” icon and the entire figure is flooded with color. Don’t blow it, I pleaded. My entire operating vocabulary was suddenly locked up and the only words floating within reachable grasp were those that most hopeful job candidates would keep far from any resume: autism, anxiety, weirdo, PTSD, raped-and-ruined, depression. With each half-second that passed, I could feel my mutism mounting an aggressive offensive, so I picked the least “incriminating” of the limited options still available to me, “depression!” I blurted out as if it were the solution to the final puzzle on Wheel of Fortune. Say something else, I begged of my brain. “Uh, I have chronic depression.” That doesn’t sound good I thought. I was afraid to watch his reaction on the screen but forced myself to make momentary eye contact with his video. He shifted, perhaps uncomfortably, and waited to see if I was going to say more. Nothing. “Oh,” he added, as if hearing awkward news on a first date when you’re trying to be polite but secretly disappointed or disgusted.

The energy from the entire conversation plummeted and was swallowed by each of our computer screens, leaving a vacuous and stale hum of the remote connection. Whereas before, we were volleying eloquent ideas and relaying enthusiasm with each pass, the silence now was stifling. I seemed entirely unable to even formulate a coherent sentence to thank him for his time and end the call. I considered simply x-ing out of the window and blaming technical difficulties, but God threw me a bone. I took a few deep breaths, aware that my back was now sweating under my sweater, and found my voice: “yeah, I have chronic clinical depression and it’s something I battle on basically a daily basis, but I’ve learned to cope and keep it at manageable levels.” Good start, I thought. “It’s like any problem. It’s simply a challenge that I’ve been dealt but it makes me stronger and as I’ve matured, I’ve discovered productive ways to handle it.” Give an example, I encouraged myself. “Like my dog,” I offered. “I’ve found so much joy in spending time with her and I feel like I connect with her in a meaningful way. There’s something very grounding about pets and caring for her brings me happiness.” Call in the generators. It was as if I summoned the energy back and resuscitated the conversation enough to at least give it a moonshot of a surviving chance. “I love my dog too,” he offered. “What kind do you have?” “A golden retriever!” He said. “Awesome!” I said, which, although not the most prolific response, was better than nothing.

Shortly after, we wrapped up the meeting in a slightly less awkward fashion. What I figured was just going to be a rote interview, turned into more of a stressful stimulus that I envisioned. My uncharacteristic nervousness left me surprisingly sweaty and I had to rinse off and completely change outfits before moving on to the next thing!

The whole experience made me wonder why it’s so hard to share personal information about the struggles we face. Everyone has some challenge, so I’d think it would feel more natural, or at least less mortifying and self-sabotaging, to admit them. I partially blame my self-esteem and imagine it’s never as opportunity-killing as I imagine it to be, but I think the stigma surrounding mental illnesses and autism is still a reality and such information can hurt one’s chances for a job or a second date or whatever the objective might be (save for therapy?). I have vowed to be more upfront and try to increase awareness, so I’m hoping that if this job doesn’t pan out, or even if it does, down the road, I can be more open with any self-identifying questions and not fret so frantically about the implications. Especially if I wait until I’ve demonstrated my value and command of the position, it shouldn’t hurt my reputation and instead, hopefully would dispel some of the incorrect perceived weaknesses or conflicts with my viability and merit as an employee and person.

 

Phone

To add to my string of recent falls, I took yet another tumble down some of the stairs yesterday. Thankfully this time, I didn’t cause much bodily harm although I did crack my cellphone screen. Of course, this is certainly a better trade in many ways, I found myself being just as upset, if not more so. I know that people talk about technology addictions, especially in terms of some people’s attachments to their cellphone, and I’m probably in that camp of people. I can’t really surmise why most people become obsessed because frankly, I don’t have any friends who are to ask. My husband still uses a flip phone and no one else’s phone in my family seems to be a permanent extension on their hand like it is in my case. For me, my phone is my world. It is my way to connect to other people and, in its own right, it is my friend. Since I work at a home office and have no local friends, it is the only vehicle through which I communicate with people and the outside world. I know this is abnormal and unhealthy, but it is my reality. My phone is my anti-anxiety medication; when I don’t feel well, I remind myself of the outline of my phone in my pocket and I feel assured that I can get help if I need it. When I was attacked, as soon as he grabbed me from behind and threw me to the ground, he ripped my phone out of my hand and flung it across the room. When he silenced me, I had no means to communicate that I needed help except silent prayer in my mind. Four days after the attack, I was in separable from my cell phone. My hand was constantly on it, even when it was in my pocket, under my pillow, or in the bathroom.

This phone has been with me for nearly three years, which, given my carelessness, propensity to fall or damage things, and its constant use, is remarkable. Maybe it is the length and depth of this “relationship” that, ashamedly, makes me mourn the breaking of this device.

I am fully aware that phone is not a real friend, and to even remotely consider it as such is quite pathetic. I want to connect with people. I want to have more friends. I’d love to have someone who called me to meet up and hang out. This is a process though and an arduous and unnatural one (for me) at that. For now, I have a handful of good friends that I text or call daily. These people, for the most part, inhabit fragments of my “old” lives: times when I was surrounded by more people, forced to be more social because of work or habitat, or was less encumbered by physical and mental obstacles. (Chronic disease and my near inability to drive certainly hampers my ability to participate in normal social events.) These people have hung with me through changes, challenges, and miscommunications. They have allowed me to grow as a friend and they have ridden out the bumps I’ve made as I’ve learned to be a better friend. I am blessed to have a place in their hearts and I honor and nurture the prominent residence they have in mine.

I am a member of several online support groups for adults on the spectrum. I connect with these virtual friends through my phone. If people were mapped in Venn diagram, the overlapped regions are inherently much larger between my circle and the circles representing many of the other group members than my circle and many neurotypical peers whom I want to befriend.

Like sharing a common culture, language, or customs, I’m more closely “related” to other spectrum-dwelling adults in many ways, and the reciprocity of understanding one another is both easier and more expansive than between me and a typical people of “normal” neurology. Although I am so glad to have access to an artistic community thanks to technological and communicative advancements provided by the Internet, I can’t help but be honest and admit that I’d still really like friends in the flesh who I actually spend time with. Their neurology is unimportant to me as long as they are good people. Even though an autism diagnosis is much more common these days than even twenty years ago, obviously, the majority of the general population is not on the spectrum so it’s more likely to find neurotypical friends. I need to be able to bridge the gap between these two worlds. While I have done this successfully before, it takes time and effort (and compassion and patience of the other party’s part!).

Far and above the challenges posed by my social, emotional, and physical problems, I believe the biggest hurdle to clear making friends is the schedule I keep. Essentially, it’s like that of a shift worker, working second shift. Even for those social butterflies who keep such a schedule, finding friends and participating in social activities is nearly impossible, especially if you don’t live in the city and are isolated in a small town. New York City may be the city that never sleeps but western Mass, although wonderful in many ways, gets plenty of sleep. My body operates on asynchronously with most other people. I’m up before 3am and done for the day around 5pm. I’ve tried coercing it into a more “normal” routine, but that just wreaks havoc on every physical and mental process. Even with Benadryl and nights of not falling asleep, I cannot sleep past 4am. I can then try to remain in as much of a sensory-depriving environment as logistically feasible to keep my overload below threshold, but even so, it’s virtually impossible to have the physical and mental stamina to persist past 6pm before I must be prostrate to the couch with no movement or talking. My brain runs nonstop in high-gear all day and I have yet to tame her incessant work; I can consider and effectively work on many things at one time, but then I run out of legs for the end of the race. I’m a relay of runners who ran their lap together around the track at full speed instead of passing the baton for each individual leg. I’m embarrassingly exhaustible; I’m a racecar on full throttle with no brakes. All this is to say, when most people head out the door for their morning commute, I’ve already put in four or five hours of work, and when almost everyone is clocking out for the day and are finally available to hang out, I’m crawling into bed or nearly comatose on the couch. The only groups of people I seem to overlap with are stay-at-home parents, the elderly or retired). My small town seems to lack any sort of daytime programming or activities for anyone outside of the aforementioned groups, and truth be told, I’m working most of the day anyway, even if I do have some scheduling flexibility. Despite this scheduling incompatibility, I keep looking and hoping to find some venue to meet in person and cultivate friendships. It’s easy to resign my socially-avoidant self to ongoing isolation and fall prey to a myriad of excuses, but I’m actually rather disciplined in researching options, trying to get out there, and simply recognizing the obstacles for the purpose of strategically mounting an effective offense rather than ceding to their debility. At the end of the day, I need to respect my deal breakers (in terms of my work scheduling obligations and energy needs) but compromise on every possible manipulatable variable to try to make it work. My mom always says I find these really interesting opportunities and I do because I’m willing to cast a really wide net; you never know what will pan out so it can only be fortuitous to keep an open mind and religiously seek opportunities for whatever it is you desire.

I am grateful that I live in a time of interconnectedness and communities engaged through technology. In many ways, the Internet has made the world smaller by forging bonds across great distances. My remote friends and online social support network keep me from being entirely marginalized and allow me to hone my relationship skills and understand myself better and more compassionately. It somewhat removes the “freak” or “loner” label that I’d otherwise tattoo onto myself (instead it’s just a removable sticker). Perhaps I’m too addicted to my phone and I recognize that it’s far healthier to have in vivo friendships, but for where I am now in my life, it’s an indispensable tool and companion, a device that teaches me, alleviates my anxiety, and connects me to others and my world. I hope my new one further guides me to forge friendships and that more of the “lifetime minutes” for calls sent and received are occupied by quick conversations to establish plans with others, then it will navigate me to the meetup and get stowed in my pocket while I make new memories with new friends.

 

Mental Health Awareness Month

April was Autism Awareness Month and May, among other things, is Celiac Disease and Mental Health Awareness Month: two other causes near and dear to my heart. There’s been a boom of awareness around celiac disease, though partly convoluted by the gluten-free fad, yet I don’t feel I need to devote much attention to it at this point.

Mental health awareness, on the other hand, is more important to discuss, primarily because mental illness still seems to carry a stigma that it’s a weakness and should be hidden, something disgraceful that should be covered up—a coveted secret not to be confessed. Even when I was in graduate school last year, I remember telling a classmate that I wanted to adjust the arranged meeting time for a group project because of therapy and he replied, “oh, what injury do you have?” assuming that it was physical therapy to address a running injury (an innocent, and reasonable mistake). I said, “no, psychological talk therapy for depression and anxiety.” “Uh woah, yikes, weird. Uh yeah, let’s just pretend it’s physical therapy.” He, by no means, said this with any ill-intent; on the contrary, he was trying to protect my ego and present the “safer” or more respectable alternative to the group to spare me the assumed embarrassment.

I’m so accustomed to mental health treatment and therapy at this point that I’m not afraid to admit that I need it, use it, and find it helpful. Of course, I prefer not to broadcast it and it certainly would never have a place on a brag reel, but mental health services are simply another legitimate, and necessary facet of healthcare. Like physical illness, which can range from acute viruses or injuries to chronic illnesses like multiple sclerosis, and range in severity from mild infections requiring a short course of antibiotics to intensive or emergency care situations or terminal cancers, mental health illnesses run the gamut. Some conditions are acute and short-lived, while others are chronic; some are more of a mild nuisance while some are debilitating. Even depression can be experienced in an acute bout in response to a difficult situation and some anxieties or phobias only crop up when encountering a specific stimulus. Other people, myself included, have chronic depression and generalized anxiety (and PTSD) that are regularly present. Beyond anxiety and depression, there are probably hundreds of other recognized psychological conditions with just as many varied presentations as people afflicted with them. Also like some physical illnesses, a variety of mental health conditions go undetected or untreated. This can happen in cases where the umbrella of symptoms is hard to identify or they exist at a low enough level or persist for so long they become the individual’s “normal,” or because of lack of awareness that there is help, or one’s pride or lack of insurance/resources preventing one to seek help.

Mental health awareness, or increasing the frequency with which these conditions are discussed is therefore important for two key reasons: to increase the general public’s understanding of symptoms and available resources (to aid diagnosis and treatment so that individuals don’t suffer in silence or from an uniformed place) and to show the variety of shades and types of psychological illnesses and their common prevalence (to help reduce the stigma of it being “weird” or “shameful”). Anyone can experience mental health problems, although some people are more susceptible to certain illness than other people. Receiving a diagnosis and participating in treatment is a critical step in managing or mitigating symptoms and reducing risks associated with symptoms or behaviors of such diseases. I can speak to the fact that left unaddressed and unchecked, mental health problems can escalate to severe issues or dire situations. Like physical problems, the earlier a mental illness is addressed, the better. It would be dangerous to allow bacterial pneumonia to fester for weeks, lest it turn into a more critical condition; it is equally risky to sit with depression for weeks on end, allowing it to spiral into a more critical condition. Then, instead of responding with more conservative treatment or improving more quickly, it can stick around longer and necessitate more comprehensive measures, not to mention the unnecessary suffering.

I hope that people will continue to speak up about their battles with mental illnesses. Discussions and admissions are some of the best ways to increase awareness, educate others, reduce the stigma, and potentially help or save someone else’s life. I vow to do my part and try my best to be brave, honest, and open and engage in conversations, even if personal or uncomfortable. I’d rather be slightly embarrassed (though my whole point is that I shouldn’t be, it’s natural to be in our society’s current attitude towards such issues) and divulge certain parts of my life that are nowhere near pretty or perfect, and potentially help someone else who is suffering alone, confused or worried, or too shy to take the next step.

Here is a resource that may be helpful

:

http://www.mentalhealthamerica.net/may

 

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.

 

 

“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.

Empaths: I Feel What You Feel

There’s a fair amount of controversy, confusion, and misunderstanding surrounding the relationship between empathy and autism. Of course, autism is a spectrum and there are as many presentations of it as there are autistic individuals, but one of the classic and traditional diagnostic criteria assessed empathy, with the notion that autistic people lack empathy. I don’t feel qualified or informed enough to comment on any sort of “autistic population” at large, but I do know that there is a subset of autistic people, particularly women, who are extremely empathetic. This is sometimes speculated to contribute to the frequency of females evading proper diagnosis at a younger age: the screening tools employed are looking for one thing (significant lack of empathy), while the characteristic is radically different. This makes as much sense as a taxonomist deciding that in order to be classified as a mammal, an animal must lay eggs. Sure, there are a handful of mammals that do (platypus and echidna), but many (and most) don’t.

It might surprise you to know that the adult females that I’ve met who have autism spectrum diagnoses tend to consider themselves to be overly sensitive and empathetic. My occupational therapist describes us as Empaths. Besides just understanding the emotions of others, we feel them, viscerally and emotionally. If someone is frustrated by a situation, we feel frustrated too. After the death of a friend’s loved one we may not even know personally, we cry because we know they cried. If someone is depressed, we absorb that emotion and join them in that place of heartache and sullen heaviness. It can even extend to physical mirroring, as I call it. In this context, as someone else describes or exhibits physical pain or discomfort, we may feel it as well. This is something I frequently experience, which is both bizarre and uncomfortable, both socially (embarrassing) and physically (who wants to experience additional pain?). If I’m trying to be a good listener and sympathize with someone’s discomfort or burden, my job doing that is polluted and challenged if I’m empathizing instead of sympathizing. It’s their time to complain and express; it’s my responsibility to be a supportive listener, keeping the story in their narrative instead of entering it as a participant. Instead of feeling fully engaged and focused on listening and showing care, I find myself expending significant mental energy to fight the pain I’ve taken on by imagining I’m them and pretending I’m completely physically fine as I should be. It’s distracting and frustrating; it’s already hard for me to understand language and communicate socially, so the last thing I need is additional roadblocks. This “physical mirroring” happens to me most often with people I know and care about, but also sometimes with characters on TV or in books, especially with animals and children.

This weird empathetic phenomenon can even extend to inanimate objects. When I see things that look like they should be alive, I panic when they look trapped or damaged. One of my favorite little annual traditions when I lived in New York City was browsing the Christmas craft village at Columbus Circle: a bevy of unique artisans displaying their products in rows and rows of tents. I am obsessed with lions and I went with mom my last year in NYC and we bought this stuffed aromatherapy lion who had a pouch for a microwaveable scented heart that was supposed to aid relaxation with a calming lavender aroma. Well, the woman selling the lion tried to remove him from the plastic packaging he was in. His head was out but his body was ensnared in a flimsy clear plastic box to help display him. She started wrestling to get him out, holding him by the head to pull his body through the neck hole, and I had a MELT down. I totally freaked out, crying and crying, telling my mom he was hurting. My own neck started feeling strangled and I felt the weight and pressure of a confining enclosure around my limbs. It was real and it was admittedly embarrassing: a 26-year-old in a puddle of tears and a coughing fit, yelling “don’t hurt him!” over a stuffed toy. Passersby most likely misinterpreted my behavior to be a grown adult throwing a toddler’s temper tantrum over my mom saying “no.” I could feel the rise of body heat that comes with shame as it battled my compassion for the lion’s painless pain; after all, I’m fully cognizant of societal norms for adult behavior and I was violating all of them (I’m also aware that a stuffed animal is not actually in pain). Mom had to interpret through my halted gasps and tears that yes, we wanted the lion, but no, please do not continue to remove him from the box for our inspection; he looked just great. I don’t think it was a matter of too many read-throughs of Corduroy as a kid, either. It’s just the way I’ve always been and I can recall many similar incidents.

What I’m trying to say is: challenge and question stereotypes, and operate from a place of curiosity and compassion when you encounter something you don’t understand or that contradicts your previously established thinking. Don’t assume that someone is a certain way or doing a certain thing because they are “autistic” (or any other diagnosis, race, religion, or any other categorization). Many disabilities are invisible, but everyone has a story and everyone, for the most part, is doing their best. Don’t assume autistic people don’t care about your feelings or thoughts; don’t misinterpret their responses as a lack of compassion or inability to empathize. Like all groups of people, we are all different and some of us absolutely care, more than you could know. We just may lack the ability to communicate or demonstrate that compassion in the “normal” way, or we may be caring “too much” and don’t want to overshadow your needs.

Autism, like all the labels I carry, does not come with a uniform. We don’t all look, think, feel, or act the same. We are like you and very different from you. Many of us, like many of you, are looking for connection, compassion, patience, and understanding. When in doubt about our (or anyone’s) intentions or behavior, just ask. After all, isn’t it interesting to learn about someone else’s world experience? Don’t let “differentness” or confusion prevent you from connecting. Let those with differences into your world and shatter whatever stereotypes you may consciously and unconsciously hold; let us be missionaries of love and understanding, students of human nature and of each other.