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.

 

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

 

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.

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.