“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.

 

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.

Web

I have chronic nightmares. Sometimes they are so realistic and frightening that my brain won’t let my tired body go back to sleep afterward for fear of being transported back into the horror. Usually, they include pieces of my trauma or at least feelings or phrases that I had or heard during the attack. It’s surprisingly hard to get someone’s evil words out of your head even when they treat you utterly inhumanely and you don’t respect their opinion. Not every nightmare necessarily includes my attacker, even if it does include reminders of the attack, and even still, not every nightmare relates to that. My therapist says that this type of gross sleep disturbance, even long-term, is normal in these situations.

The other night, my sleep brain had me in the familiar supine position with the feeling of a suffocating body cracking down on my ribs. I couldn’t see his face, but I had the knife blade and choking sensation. Thankfully this time, unlike in real life, I was being tortured over something that now seems comical: that I had never read Charlotte’s Web and didn’t know the story. I woke suddenly in my usual gasping-for-air panic, relieved that it was unrealistic enough to know it was just a bad dream and that I wasn’t going to live through another torturing just for failing to read an iconic children’s classic.

Still, I decided perhaps this was a subliminal message that I should read the book; after all, I’d give anything to make the real memory go away, and since I can’t seem to do that, I can try to resolve the petty issues in some of the less-severe nightmares.

As unpopular of a sentiment this likely is, I generally do not enjoy reading literature. I’d venture to guess that 49 times out of 50, I gravitate towards a nonfiction book over fantasy, science fiction, historical fiction, or any type of creative literature. I seem to really struggle to imagine things that are not portrayed extremely realistically; even then, if the context of the book is unlike anything I’ve ever experienced in at least some tangential fashion, it’s frustratingly challenging for me to relate to or get into. Luckily, perhaps due to my strange empathetic skill, I do seem to possess a strong innate ability to see similarities in many superficially different topics. Many struggles have the same universalities.

For the record, there certainly have been many great literary works I’ve enjoyed, but the ease, speed, and appreciation with which I enthusiastically devour nonfiction pieces far and beyond outshadows this number. I think it has something to do with the fact that I am essentially unable to picture anything I’ve never seen. I can listen to the most detailed description of something and absorb all of the words and their essence, but be completely blind to conjuring up a mental image of that description. Consequently, it’s hard to develop relationships with the characters or storyline. I imagine that my substantially challenged ability to read facial expressions and understand people also gets in the way of bonding with or at least following the thoughts, emotions, and decisions of characters. When discussing my evaluation results with the neuropsychologist, he said this can be a challenge for those on the autism spectrum; it’s not a complete lack of creativity, but more of a difficulty imagining a different reality. You’d think then that I’d be fine watching movies since the ambiguity is removed or the guesswork is taken out of imagining how things look, but I mostly only enjoy documentaries, food TV, or shows where you get to know the characters so well over time that their mannerisms, expressions, motives, and language, become more understandable. In any fantastical book or even fictional storyline, I find myself completely lost. I’m unable to follow the plot or keep track of the characters in most cases because I’m missing crucial pieces of information.

I don’t know if this is the reason that I’ve never read or seen Charlotte’s Web. Since the library had it on the shelf and it looked short enough to squeeze in between various obligatory readings, I figured it was worth a shot.

I liked it. I was astonished at how much. As I suspect most people do, I cried when Charlotte died. In retrospect, perhaps this is the reason my parents didn’t encourage me to read this book when I was younger. Although it’s presented as a children’s book, it not only deals with many adult themes, but it also is emotionally mature. Ultimately, I think that’s what makes a good piece of literature: it has a lasting impact on a person and it can be universally understood across the ages or types of people (even if it’s fictional!). I was overly sensitive and emotional as a child-which, apparently is a quality that I have not shaken-and after physically throwing my body on the floor and flailing my limbs in a fitful tear-filled meltdown after the dog dies in John Reynolds Gardiner’s Stone Fox, I’m guessing my parents steered me toward more soundly upbeat stories. I guess I wasn’t ready for the pain and sorrow of reality…

Charlotte’s Web deals so beautifully with the themes of friendship, sacrifice, the circle of life, ingenuity, love, loyalty, and growing up. Despite the significant need to suspend disbelief and buy into the conversations and relationships between the animals themselves and Fern, I found it surprisingly easy to relate to the different characters and imagine it enough that I could follow the storyline (it helped that it was basic enough because it’s intended for children!). I wonder if the fact that I seem to understand animals better than people in real life played to my advantage as well!

While I found many powerful quotes in the book, particularly pertaining to friendship (and one depressingly relatable one from Wilber about unhappiness and loneliness) my favorite of all was delivered by Fern’s pediatrician, Dr. Dorian, after her mother asks him if he had heard that the spider was spinning words in her web.

He replied: “I don’t understand it. But for that matter I don’t understand how a spider learned to spin a web in the first place. When the words appeared, everyone said they were a miracle. But nobody pointed out that the web itself is a miracle.”

How true on so many levels. For me, it was a reminder to appreciate the small things—the magic in the mundane—and to not always be chasing something bigger and better. Sometimes, the very best things are the things we easily take for granted and it isn’t until there’s a blatantly clear sign of something miraculous that we pause enough to consider that the simple act itself—the thing that’s been there all along—is something wonderfully special as well.

(Nature is amazing.)

Mirror

Here’s a secret I haven’t told anyone: After I got attacked, I refused to look in a mirror—clothed or naked—for about two years. I’m finally now working on it.

Unfortunately, I also seem to have an internal dialogue that believes that somehow my opinion doesn’t matter as much as someone else’s. I think that’s the predominant mindset of someone, like me, with low self-esteem (and boy, is that hard to change!).

Recently, I’ve started doing an admittedly embarrassing exercise to combat these issues. I hate the phrase. “killing two birds with one stone;” I prefer, “getting two for the price of one.”

When I go downstairs in the morning, it’s totally dark and still. It’s usually approaching 4:00am and the house has just a slight hum from the fan. I turn on the bathroom light and look in the mirror at my face. Out loud I say, “I am brave.”

In the moment, it doesn’t feel cheesy. Of course, documenting it in writing exposes me in a way that makes it sound beyond lame, but I’m admitting it because it’s something I need to do for myself. I try to make eye contact with my own reflected eyes and hold it for 2-3 seconds. This may sound trivial and easy, but I struggle with eye contact in general and have to make a very conscious, and often uncomfortable, effort to do so. It seems equally hard, if not harder, to hold eyes with myself. After the two years of feeling utter disgust and repulsion with my own body and employing a concerted effort to always avert my eyes to prevent myself from the disgrace of my own skin, it’s incredibly daunting and foreign to simply look at my face. If 2-3 seconds is all I can handle now, it’s still a big step, and I will recognize that.

The first day I did this, I didn’t even use the light, just the glow from my phone. I simply looked in the mirror for a second and said nothing. Then I walked away in shame and got on with my day.

After a few days, I mouthed the word “hi” to my reflected self and thought nothing of it. As I approached the living room to see my dog I thought, why did I just say hi? Then I realized: it was the first time I was re-affirming myself as someone that matters, as a person to respect, as someone to greet. It was like an introduction to or a formal acknowledgement of this person I’ve become since literally picking myself off the floor after my attack.

So then, I had a few days of mouthing “hi,” which slowly progressed to a whisper. One day, a “good morning,” then: “you are brave.” On that morning, I stared back for a second, trying to lock eyes in the mirror. I wondered, when I’m talking to my mirrored self, should it be you are brave or I am brave?

I walked away, worrying that any over-analysis would make me too self-conscious and drop the practice all together.

I fluctuate now. I’d like to say: “I am brave” but mirrors have always been weird to me (is this an ASD thing?). Either way, I’m hoping this practice will translate into an increased comfort in looking at my own face or body and slightly better self-esteem and confidence. I have a long way to go but I think this blog coincides with my self re-introduction and both are small steps toward validating my existence, my strength, and my ability to contribute something meaningful to some piece of this world.

 

Am I in a Wax Museum?

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

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

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

 

 

The Weight of Waiting

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

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

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

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

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

“YOUR Autistic”*

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

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

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

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

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

I didn’t respond.

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

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

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

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

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

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.