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.

Lonely

I’m painfully lonely today. This is certainly not an unfamiliar feeling for someone as introverted, socially-avoidant, and socially-isolated as me, but it’s worse today than usual. I’m usually quite satisfied with somewhat robotically and unemotionally going through my day in solitude and that’s exactly how virtually every weekday is, except for the frequent spattering of appointments throughout my week. I work full-time from my home office and Ben and I can count the minutes, rather than hours, that we are in one another’s company each day; our schedules don’t overlap well. I don’t have kids and I don’t have any local friends I spend time with since, in the timeline of someone on the spectrum (who has trouble making friends and doing social things), we’ve basically just moved here. It’s been five months and four days, but who’s counting…

Anyway, today I’m wearing the loneliness like a full-body leaden radiation shield. It’s not the comforting and calming weighted blanket feel; it’s the heavy trapping feeling like trying to fight a strong undertow to get back on shore after a long swim. It’s days like today that the familiar welling of tears keeps filling my eyelids and I have to instantly distract myself to avoid succumbing to their flow. 

My house is cold, both literally and figuratively. It’s an unusually chilly May afternoon and the pervasive grayness has prevented any sunlight from warming the room. The thermostat reads 56, which is even colder than the uncomfortably cool 58 we permitted in the winter to save money. I can taste the figurative coldness, the loneliness, the lack of vitality. When I came back from OT this morning, it overwhelmed me as I approached the front door, the coldness in here hit me like a gust of November air with wet leaves. I could see it, smell it, taste it, and feel it. Coldness like this gnaws on my stomach and encourages me to eat, even though I’m uncomfortably full, to ease the ache and fill the void I feel from lack of human connection. 

The real reason days like today bother me is because I know they aren’t isolated incidents in that it’s not an unusually quiet day that will pass. It’s symptomatic of the life I lead and very much a chronic condition. I want two opposing things at the same time and it’s virtually impossible to rectify that in an agreeable fashion: I long for love and company yet I’m wildly uncomfortable, overwhelmed, and exhausted by it. I prefer to feel connected yet I struggle to connect. Social interaction is my constant logic puzzle or science experiment, as I must carefully observe, analyze, and try to understand and replicate the needed responses. I miss the opportunity to enjoy the moment and be present in the engagement because I’m busy “working” to make sense of it. It’s like instead of watching the production, I’m manning the spotlights and just waiting for the cues instead of comprehending the meaning of the play. It’s not until after the friend and I have departed and gone our separate ways that I can then run back through everything that happened and try to gather the meaning from the whole rather than each individual part. It is then I can assign emotional significance to what happened and not just the literal meaning of each sentence, that I so carefully followed in a calculated manner to determine my next question or response. I appear articulate and like I’m understanding (I hope) because a ton of legwork is quickly and constantly being performed in my head, but unlike a computer, it’s hard for me to simultaneously carry out all of these processes so some information gets stuck in the holding area, a backlog of sorts, that I evaluate later, even if I don’t want to anymore (like if I’m trying to sleep). Unresolved material begs to be processed before moving on to the next activity, which is one reason why social things can be so tiring: for me, they extend well beyond the end of the interaction. 

Any potential sensory overload aside (say we were out and about doing something), my brain will not cease analytic activity until it has completely finished assessing and cataloging all of the verbal, nonverbal, environmental, and contextual information from the encounter. Then, for some reason, after that lengthy and arduous process seems satisfactorily completed, it starts digging up prior social encounters (either organically experienced or observed on TV or elsewhere) and reassessing those or comparing the new material to whatever is stored in memory. There can be no obvious relation but I have to ride out the digestion because I can’t quell it. Sometimes, useful connections are made, such as relating a new discussion about a friend’s volatile freelance job situation with a prior conversation about stressful financial times. Frequently, it’s useless details or seemingly elementary concepts: the geometric pattern of someone’s earrings reminded me of the sweater of someone at the library four months ago or people’s lips purse when they are hesitant to answer a personal question (nonverbal patterns take up a disproportionately large percentage of my brain processing speed and mental attention).

Days like today are somewhat like getting a lousy performance appraisal or report card; all of my acknowledged weaknesses are directly handed to me in objective language. The insecurities I have, the deficiencies I know to be problematic, are presented in clear view and the only possible reaction is to yet again acknowledge their presence and significance. We all want to be “successful” or at least see progress, so it’s ego deflating and discouraging to get reminders of the contrary. As someone who’s naturally and habitually critical of myself, I’m fully aware of many of my challenges and must deliberately try to recognize growth and give myself credit when it’s due. This is not one of those cases. I’m lonely because I live a pretty isolated life and my good friends all live quite some distance from me.

Today, like many days, I turned to Comet for support and, as always, found her love to be boundless and her attentiveness to be unparalleled. While this is truly one of the wonderful blessings of having a loving pet, I want today’s pain to remind me to continue to make a concerted effort to reach out to people I already know and try and cultivate those friendships and also push myself to make new friends in my community. Although this is probably my biggest challenge and least comfortable position, ultimately, it is a required means to the end I desire: meaningful connections with friends who I can spend time with in an emotionally gratifying way. Loneliness carries a potent heartache; I battle enough pains as it is. Alleviating this one will not only eliminate its insult, but friendship has the transformative power to lessen other pains as well. I could use all of that medicine that I can get.

 

Is the Sinkhole Inevitable?

I’m in a tough place today and there’s not really any specific reason or excuse for it. I suffer from chronic clinical depression. Most days, I’m actually “fine” because I’ve become so accustomed to the depressed feeling that the bar against which I compare my emotional state has been permanently lowered. On these days, I grind through the motions, keeping busy with work and daily obligations, peppered with (hopefully) some leisure activities to lift my spirits. Other days, like today, for no obvious reason, I’m not fine. Everything feels like an emotionally draining chore and my resilience seems completely dried up. On these types of days, I may even cry with just the slightest frustration or discomfort because I’m in a perpetual state of straddling the precarious threshold between holding it together and completely falling apart.

On days like today, I feel deep and genuine loneliness. I am alone all day every weekday, but even if I was blessed with company today, I’d likely still feel loneliness in my heart. That’s one of the challenges of true clinical depression—it can be virtually impossible to ease the suffer during a low because the real things I’m depressed about are just that: they are real, they are heavy, and they are virtually impossible to change. Add those factors to a neurochemistry that predisposes me to emotional lows, and it’s more of a mystery as to why I (thankfully) have mostly “fine” days versus the more occasional bad days. (For the record, I’ve been doing therapy for several years and still actively do so and I don’t respond well to anti-depressants so I steer clear of those.)

Why is today worse than usual? Like I said, it’s unclear. The weather is awful and I’m in a lot of physical pain, so those two variables don’t lend themselves to the easiest of days, but honestly, I’m in pain most days and New England weather often graces us with less-than-ideal and erratic conditions. It’s probably somewhat of a chicken-and-egg situation. The more depressed I feel, the more I become aware of the reasons behind my depression and my powerlessness (coupled with impatience in some instances) to improve these. For example, when I’m really down, it helps me to get outside and run or take a walk with Comet. Right now, it’s pouring rain and I am on crutches so this is not going to happen. That makes me feel more trapped and takes away one of the few effective coping mechanisms I have. The frequency and severity of PTSD flashbacks is significantly magnified when I feel trapped and depressed. There’s an exponential relationship between the number of flashbacks I have in a day and my depressed mood, so as they come with increasing frequency on days like today, the emotional pain I feel skyrockets. It’s pretty impossible to have a good day when your brain will not bring you peace from violent memories. I think my PTSD has been particularly bad lately because of my broken foot. It just so happens that when I was attacked, I was also in a boot with a broken foot. The injury did not contribute to the traumatic event but my brain still relates “broken foot” with “attack” because in the weeks following the attack while I was healing, I was also painfully aware of my foot situation because again, it limited how well I felt I could cope. Now when my body sees “boot” it thinks, “attack.” (Pavlov was onto something…)

I’m depressed about things other than the attack and its aftermath (the ways it still affects me today), the foot, and the weather, but the other stuff feels even less topical and more stubborn or impossible to change. For instance, I’m upset that I have all the sensory processing challenges with autism because they are so limiting. Even with dedicated OT (occupational therapy), these aren’t going to go away. I can’t change my neurology. There’s an actual issue in my brain. The only thing that I can control is my attitude toward the issue and that forces me to abdicate the captain’s chair from which I’m a lot more comfortable. It puts me in more in the passenger’s seat: a less powerful, more hands-off role, with significant limitations in my ability to effectuate change. I’m not steering the ship and it’s not going where I want it to, yet I’m told to just take out my camera and enjoy the view. Sure, a bunch of pictures of glacial bays may be pretty, but if I actually want to be sailing by a coral reef, there’s only so much satisfaction that icy vistas will give me. One of the autistic brain’s modus operandi is ruminating on something and not being flexible to change course or stop fixating. When my brain decides or wants something, it’s all in and there’s virtually no way to convince it otherwise. This isn’t always a negative trait; in fact, I’m sure it’s helped me remain steadfast in many pursuits and goals, but such inflexibility can also be frustrating and annoying (to others for sure, but to me as well!). Even when I want to change course or focus or let go of something, I often can’t and no amount of logical or emotional convincing or targeted strategies will convince the rest of my brain otherwise. Of note, partly due to this reason, I find it nearly impossible for me to transition and switch tasks. Even if I physically move on to the next thing on my agenda, nine or more times out of ten, my brain is still analyzing, cogitating, and deliberating on my last task. I am much more productive if I only take on one or two things per day and do each for an extended bout of time because I don’t waste time trying to wrangle my brain to shift gears and catch up with the new activity.

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Well, this post has been marinating for several days. I’m not doing any better. I’m findings myself clawing at the falling rubble at the edge of the cliff as a dangle and fight the to stay on the solid land above the abyss, above the sinkhole of deep depression below. I’ve been down there so many times and it is barren, dark, cold, and scary. It’s not where I want to be and it’s even harder to climb back out than it is to cling on and try to grab any solid rocks I can find, even though this position is also terrifying and exhausting. I’m trying to distract myself and also dedicate my energy to preventing the fall. Hopefully instead of avoiding writing as I have been for a few days, I will embrace it as a tool to help hold me up where the beauty, the light, and the stability reside. I’m surrounded by goodness when I am brave enough and strong enough to see it, so hopefully admitting my current struggle will help me face the pain and this problem and fight back with the tenacity and resolute that seems hardwired in my steadfast and stubborn ASD brain.

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.