Category: Social

29: When You Don’t Believe I’m Autistic

Welp, it finally happened. [Beware (or enjoy?): snarky post ahead!]

Over the last few years, I’ve been coming out to family, friends, coworkers, etc. in an effort to be more authentically me, mask less, feel comfortable in my skin, and help others better understand my boundaries and needs.

I have been very, very ridiculously lucky to have mostly positive reactions when I tell people I’m Autistic. At the very least, reactions have been surprised, but affirming. But I brace for the reaction of each new person I tell because I know that people routinely react ignorantly to Autistics coming out.

And it finally happened. I told someone (whom I no longer work with) that I wasn’t able to take on more of a workload because I’m Autistic and am feeling very overwhelmed. And her response?

Well—laughably—she first completely and utterly ignored me and continued on with the monologue she was currently wholeheartedly invested in. Then about 30 full seconds later she paused and said:

“Wait. You’re on THE SPECTRUM?!? Yeah, okay… we’ll go with that.”

She may as well have rolled her eyes given the tone she used.

She then plowed ahead with her monologue before pausing again and saying:

“Really? You’re on the spectrum? Weird, I can always tell when people are. I work with kids who… never mind.”

So, maybe not the most ideal reaction. (Yes, this is sarcasm. I can do sarcasm.)

Honestly, what I hated most about the situation was my reaction and the feeling of helplessness. I wish I had been able to directly call her out on it, but that’s something that takes time to learn to navigate in real time. I’m the type of person who needs time to really process a situation and react later. The type of person that takes a few weeks of simmering and thinking about a situation and then write a snark-filled post after fully processing.

And that’s okay.

What’s not okay is how this person reacted to me.

So let’s unpack her reaction together, shall we? Class is in session! (Still feeling snarky…)

A photo of a black woman with glasses in professional attire, paper in hand, teaching while writing with a marker.
Learning time! Photo by rawpixel.com on Pexels.com

1) “I can always tell when people are Autistic.”

Yeah… No, you can’t. I mean, sure, you probably can some of the time. But I’m sitting here right in front of you. I’m Autistic. And you didn’t know. Ergo… no. You cannot always tell. Autistics are all around you; you just don’t realize. So yeah. There’s my “highly logical brain” for you. Sending you common sense. For free. You’re welcome.

Okay, on to the next one!

2) “I work with kids on the spectrum./My brother’s best friend’s cousin’s niece has autism.”

Ok. Well, first of all… I feel bad for those kids. (Is that mean? That sounds mean.) Honestly, anyone that ignorant needs to be further educated before working with Autistic people.

Literally every person is different. Didn’t know I had to say that, but apparently I do. Why would you expect me to be like another Autistic person you know? I don’t shout “You’re neurotypical? But you’re nothing like my friend Sally!?” into your face while maintaining a disgusting amount of gross eye contact. Because it’s silly. Because it doesn’t make sense. Because it’s absurd.

Bottom line–humans are all complex and highly different beings. No two of us are exactly alike. Why on earth would you expect two Autistics to be exactly alike? As the popular phrase goes, “If you’ve met one Autistic person… you’ve met one Autistic person.”

3) “Yeah, ok. We’ll go with that” (insert nasty, sarcastic tone and/or eye roll for bonus jerk points)

Ohhhhhh boy.

So, first of all, you’re heavily implying I’m a liar. You’re implying that my psychologists and therapists are incompetent or misdiagnosed me. Or that I somehow tricked two mental health professionals doing independent assessments of me.

But more than that, you are denying my neurology. You are denying the entire structure of my brain, the way I think, and the awesome things that come along with that. You’re also denying the terrible things that come along with it. You are denying my experience.

You are being ableist, denying my struggles of past and present, denying my identity, being condescending and patronizing, and just generally being an unkind human being all in one go. It’s not a good look…

Bonus “Avoid alienating or pissing off an Autistic” Guide

4) “You hide it so well!/I never would have guessed!”

This. is. not. a. compliment.

I mean, I guess I kind of slightly sort of maybe a little get where people are trying to come from with this? Finding out that the person in front of you is a literal coping and masking wizard who is 1000% of the time exhausted is a lot. It is a feat. But it’s also messed up.

Think about it this way. As a kid, I knew very quickly in school that I was different. I didn’t have a name for it, but I knew. I was bullied relentlessly and I didn’t understand why. I even had a teacher who routinely bullied me.

It was so bad that I started to try to MacGyver together social camouflage to avoid sticking out. (Read 1: Operating Manual for a bit more on that.). My masking, ability to “pass” as neurotypical, and generally inflict extreme harm on my introverted self in order to avoid bullying and aggression is not only an exhausting production that I just don’t know how to turn off, it is the result of years of agony and bullying. Craving friendship and acceptance so much that I mimicked peers I admired. Subconsciously suppressing my neurology, personality, and desires to get by and survive.

After all, that’s such a huge part of why I started this blog—to explore who I authentically am at my core. Because I have had to put so much of who I am away in a little box on a shelf in the back of my mind. And I’m just starting to unpack that box now.

5) “You’re so high functioning!”

There are a few phrases that are bound to make most Autistic people angry, and this is one of them. For one thing, functioning labels are just completely skewed and narrow. Functioning labels hurt all Autistics. Period. (I’m not going to go too far into this, but will insert a link once I find a good one.)

You don’t see the emotional, mental, and physical fallout from my exposure to things like overstimulation, sensory overload, long periods of social activities, or a scary experience. You don’t see my meltdowns or shutdowns (usually) because I have learned to plan out my energy and ability to cope for any given situation or day. This is closely tied to Number 4. Performing “high functioning” comes at a high cost and is just not accurate.

6) “I’m so sorry.”

Don’t be. I love me. I love my neurology (most days). The issues I deal with are related to society:  ignorance, exclusion, assumption, aggression, bullying, inaccessibility, sensory assault, ableism, etc.

7) “Oh, like Sheldon from Big Bang Theory/Rain Man/(Straight white cis man or boy)?”

No.

A photo showing two people sitting at a table, having a discussion. There is paper and pen in front of them, and one person is actively listening to the other.
Listening time! Photo by mentatdgt on Pexels.com

How you should react to someone divulging information to you:

You may find yourself saying, “Okay, Alex. I think I know how to lessen my chances of pissing off an Autistic. So what do I do and say?” While I can only speak from my personal preferences and wishes, these are some things that I would personally love to hear when I tell people:

–Thank you for telling me.

–Thank you for trusting me with this information.

–Cool. My partner is too. (Notice how different this is from the comparison above in Number 2)

–I don’t know much about that. Are there any resources you recommend to learn more?

–I have some questions. Is it okay for me to ask you some?

–How can I better accommodate you?

–What are your needs? How can I help?

20: Empathy (Part 3) The Good!

As promised in 17: Empathy (Part 1) and 18: Empathy (Part 2), I’m now tackling the positive aspects of being an “empath,” or hyper-empathetic person. In Part 1, I wrote about the stereotype that Autistic people don’t experience empathy and how—not only do I empathize—I actually experience hyper-empathy. In Part 2, I focused on media consumption and how careful I have to be with what I watch, listen to, or read due to hyper-empathy. But the focus of both posts was on the negative or tiring aspects of being hyper-empathetic and how it can be a burden. Today I really wanted to address the wonderful side of being so sensitive to others’ emotions.

  • I experience positive emotions strongly too

In Empathy (Part 1), I wrote that “I feel other people’s pain so innately that it can be so debilitating I have to try to unplug my feelings and let myself grow cold and unattached to survive.” I also described “taking on other people’s pain.”  But it’s not just the negative or draining emotions that my hyper-empathy exposes me to!  I get to experience the positive ones too!

When someone around me experiences a strong positive emotion—whether they be on screen or in my life—I am affected. If someone is feeling sheer happiness, I soak up the light from that emotion. I can become giddy and joyful when someone near me is in a similar state. I can cry from happiness and flap my hands with excitement when a character I love is happy. I sometimes have to clamp down on my emotions so that I don’t cry happy tears (or otherwise outwardly show just how happy I am) and embarrass myself when riding the waves of someone else’s happiness. The more deeply connected I am to someone, the more affected I am. It’s wonderful to experience such sincere happiness when others are happy.

  • I connect deeply with characters in media and my soul is moved by music

In Empathy (Part 2), I wrote about the negative ways that media can affect me and that “[d]isconnecting from or not engaging with certain types of media has been essential to my survival as a hyper-empathetic person.” But just as I am positively affected by real-world emotions, I am also affected by positive emotions in media.

I sometimes connect with characters in books, TV, movies, and games so strongly that it feels like I have lived their lives. I hope some people reading experience what I’m talking about and can relate. It can take me days to disconnect myself from a good book and it leaves me with more insight and understanding about other peoples’ lives and experiences. It’s an enormous gift to be able to carry over what I learn in books into reality and further empathize with others.

The emotion in music often moves me to tears and fills me with such a deep peace and tranquility that I can physically feel something in my chest fill with happiness. Sad music can unplug a deep sadness within me so that I can begin addressing it; joyful music can alter my state of mind and leave me feeling energized and full of possibility. Music moves me in ways that I can’t even really describe fully in words.

  • I’m great with kids

I started babysitting around age 12 and loved it straight away. From there I became a part-time preschool gymnastics teacher, then a counselor’s assistant at a camp, an assistant teacher, and finally an English and reading tutor. I love being around kids and young adults, and I think one reason I’m so suited toward childcare and teaching is my ability to empathize.

I told myself when I was young that I would try my best to never forget what it felt like to be a child:  the changes, the anxieties, the frustration, the lack of control… and for the most part, I feel that I’ve stayed true to that promise. I can empathize with kids and speak with them from a place of equality whenever possible. Showing true caring for a child means that I’m often let inside their worlds to see the joys, the anxieties, the excitement, and the stresses…and I cherish that gift!

  • I’m a good partner

My ability to empathize deeply makes me a patient and loving partner. When my wife is happy, my mood is positively affected! When she’s unhappy, I can empathize deeply with how she is feeling and come up with useful ways to help and support her.

  • I am a good listener and ally to my friends and family

As I mentioned in previous posts, my ability to hyper-empathize means that friends and family often confide in me. While this can be tiring, it’s also a gift that I truly cherish. I experience great joy knowing that my loved ones feel they can trust me to listen to things that are going on in their lives.

  • I can empathize with strangers

When I was 7 or 8, I heard about a flood that happened in a different state in the US. There was one church that was severely affected so much so that members could no longer enter the building, much less worship there. I had never been there, never met anyone in the congregation, nor met anyone affected by flooding, but I felt such grief that I was moved to do something. I wrote them a letter and (with my parents’ help and permission), donated my entire allowance savings to their rebuilding efforts.

Around the same age, I decided that I would foster or adopt a child someday. Hearing about kids in the system broke my heart and I was adamant that I would someday provide a loving home to a child in need. (Someday, I hope this will be a reality!)

My hyper-empathy enables me to relate to and feel for strangers—people I have never, and may never meet. It makes me a compassionate, caring, and deeply sincere person, and I cherish this ability.

So there you have it:  some of the many positive ways that being hyper-empathetic can actually be a wonderful thing and something that heavily influences the way I view and interact with the world.

19: Poison People

There’s a type of person I categorize as a “Poison Person.” They may affect me mentally, emotionally, physically, socially, sensorially, or any combination of these. They will sap my coping and social skills until I am reduced to an anxious, exhausted blob. They may actually be wonderful people; they may even be people I desperately want to like. But they are like poison to me.

A Poison Person:

  • demands eye contact
    • implies dishonesty if little or no eye contact
  • invades personal space, gets in my face
    • may try to force hugs or kiss on the cheek
    • consistently moves closer when I move away
  • wears heavy perfume or scents, is a heavy smoker
  • is impatient
    • demands immediate responses and actions
  • talks loudly or yells
  • jumps topics frequently and rapidly
  • speaks extremely quickly. Is a “hyper-speed” talker all the time
  • jumps in to fill the silence when I’m trying to process something
    • supplies what they think I might want to say or what I might be feeling
    • derails my thought process, sometimes causing me to have to start all over again
  • mocks or makes fun of me/others
    • gossips constantly, makes me wonder what they say about me
  • treats others as inferior
    • is patronizing, condescending, infantilizing, or dismissive
  • lies frequently
    • cannot be trusted; breaks confidence
  • is un-empathetic or uncaring
  • has dry, abrasive humor and finds it funny when I can’t read it

A poison person may have more than one of these traits. Rarely, I meet someone who has ALL of these traits…and I run for cover.

In theory, I avoid a Poison Person at all costs, but unfortunately many PP’s can be fairly practiced at hiding these traits. Other times,  it’s someone who is not easily avoided (example: Boss).

The effect that a Poison Person can have on me is best illustrated through a story:

I went on a shopping trip with two fellow expats while studying in Japan. One was a fairly familiar friend, the other a casual acquaintance. Normally I would avoid going anywhere with people I didn’t know well, but I was desperate to get to this particular store and had no way of getting there otherwise.

The car ride to the store was only twenty minutes, but it felt like an eternity in hell. We took the acquaintance’s car and she had air “fresheners” all over. Those things are like little migraine bombs for me. I could have handled that much, if she hadn’t been a Poison Person in disguise. As she drove, words just kept rocketing out of her mouth like verbal diarrhea.

There was no pause in the stream of words for the entirety of the car ride and I was right next to her in the passenger seat. My friend in the backseat did little to engage in conversation, and I became the sole target for the onslaught. She often spoke more quickly than I could hear (much less process), all but shouted her words, adopted high-pitched voices to imitate people, kept locking eyes with me in the rearview mirror, often grew impatient (and louder) if I didn’t fill the infinitesimally brief silences with an adequate response within her self-allotted timeframe….

Unfortunately, it didn’t stop when we reached the store; she kept it up throughout the entire hour-long shopping trip as well. I had difficulty thinking through what I needed to get while in the store–even with a list in hand. I became anxious and wanted to either sink to the floor and cry, or run out the door and into the night. At one point I excused myself to go find some random item I didn’t even want so that I could have two minutes of calm in which to breathe deeply.

By the time we got back to the car, I was at the end of my rope. During the twenty minutes of overpowering one-sided conversation returning home, I had to focus on breathing and not throwing up. I was nauseous and had a pounding headache. My thoughts were scattered and I struggled to say anything at all. I answered her in one-syllable words, hoping she might get the hint. I didn’t feel comfortable asking her to speak more softly (or not at all) because it was her car, her driving, and her kindness that got me to the store at all and I didn’t want to be rude or ungrateful.

Once I got home, I was completely nonverbal. I couldn’t force myself to speak. Instead, I sat on the couch and rocked. By the time I had calmed down, it was time for bed and I collapsed into bed in absolute exhaustion. My final thought that night was, “God, it must be exhausting to be her….”

17: Empathy (Part 1)

There’s a misunderstanding still floating around that Autistic people don’t feel empathy. This is inaccurate and misleading. True, some Autistics have difficulty with things like social imagination and being able to guess what someone might be feeling. Some struggle to understand non-verbal cues and expressions and so might not react in a way that’s socially expected. Some Autistics struggle to express what they are feeling; others have difficulty understanding just what it is they are feeling. Some don’t express themselves verbally. Some may express empathy and feelings in ways others misinterpret or don’t recognize. And some struggle with these more than others. But that doesn’t necessarily mean they lack the ability to empathize.

Just because someone is not responding to something in a way you might expect, that doesn’t necessarily mean that they aren’t internalizing it and reacting to it. A reaction may come out later once they have had time to process it. It may come out in behavior later. It may come out subconsciously. Or it may come out in an act that you don’t see as connected or related. It may just stay internalized and bottled up. There are many possibilities, but I don’t believe that lack of empathy is an Autistic trait.

But as always, I can only write from my own perspective about my own experiences and observations. All Autistic people are different just as all neurotypical people are different. I don’t and can’t speak for anyone but myself, but I hope that my words will resonate with people and provide some level of insight.

I’ve been struggling to write this post for over a week now and realized I just have too much to say about empathy so I’ll break the topic up into several posts.


I don’t lack empathy. I feel empathy in a deep, gut-wrenching, fatiguing, and heartbreaking way. Some people might call it being hyper-empathetic, others might call it being an “empath.” All I know is that I feel empathy so strongly that I often have difficulty separating my own feelings from those of someone else. I absorb emotional “energy” to the point that I become absolutely weary from it. I feel other people’s pain so innately that it can be so debilitating I have to try to unplug my feelings and let myself grow cold and unattached to survive. I don’t feel too little; I feel too much.

For as long as I can remember, I’ve felt this level of empathy. My childhood psychologist noticed how much I struggle with the deluge of emotion in the world and was always saying, “Stop taking on other people’s pain!” She’d have to remind me again and again to let it go and move on–that person would have to deal with their own pain and feelings and I had to let them do that.

As a child and teen I struggled a lot when watching TV or movies until I realized that I was having issues over-empathizing with characters or people on screen. If I’m being honest with myself I still struggle hugely with this, but I’ve learned to be much more selective with what I watch.

Hyper-empathy and “taking on” other people’s emotions are things I still struggle with. I’ll dwell on what others are going through and can’t seem to let it go. In some ways, it’s a wonderful thing to be able to do. I’ve always been someone that friends come to when they need a listening ear and I truly cherish that role and the trust people place in me. But on the other hand, sometimes empathy can knock me flat on my back for days.

Hyper-empathy isn’t always a bad thing! But that’s a post for another day….

Click here for 18: Empathy (Part 2) Hyper-empathy and My Media Choices

 

Click here for 19: Empathy (Part 3) The Good!

 

[image description: A green garden with an old statue. The statue is of a woman holding a pot on her shoulder that is spouting water from it. It is cracked and worn by time.]

 

9: My Support System

Church

Although I am not religious now, I am grateful for my ELCA Lutheran upbringing. My father was the pastor of our church when I was a child, and being a Pastor’s Kid (PK) means that I was exposed to a lot of different people all the time. We lived in a parsonage connected directly to the church and we often hung out in the common spaces of the church at one event or another.

I was able to interact with people from many backgrounds and ages, most of whom were eager to talk to the toddler and adolescent me. I attribute a good deal of my early socialization to this. It was a safe space where I felt loved.

Another way church helped was the pattern and routine of it all. The services were very structured; I knew the general outline of it at any given point. And the music! I was able to thrive through structure and music at church. And hearing and learning the familiar stories told time and time again was also comforting. In this, I found a pattern and normalcy.

I also think that I learned to be a more kind, compassionate, and caring person being in church so often. I think it was very therapeutic in many senses. The community of it all, the music, the structure, the loving messages from the pulpit…. It was again a safe and caring space, and one that made me think and grow.

Counselors

I’ve been incredibly lucky to have been in therapy since the age of about thirteen. After a traumatic experience, I fell into a deep depression accompanied by extreme anxiety. I was lucky enough to start seeing a therapist several times a week, then once a week, then every other week, and so on. Since then, therapy has been an invaluable tool in my life.

Each time I’ve moved for school or for a job, I’ve found a new therapist and usually see them once a week, once a month, or every other month. Sometimes I’ve been able to go a year or two without a session. But I like to check in with someone occasionally to refresh my mental health and make sure I’m still on the right path.

No matter the frequency, therapy has truly been invaluable to me. Not only have my counselors helped me find techniques to work through and lessen depression and anxiety, my first therapist in particular taught me to thrive. She laid the basic foundations for coping mechanisms that I would need in order to make it through rough times in my life.

I think that being in therapy from such a young age and for so long has gifted me with a unique level of introspection, emotional intelligence, and grasp of coping skills. I wouldn’t be the person I am today and wouldn’t have been able to face challenges and do as well as I have so far without the hard work in these sessions.

Teachers & Professors

Middle school was a very difficult time for me. Sadly, I didn’t often have the support of teachers in a very overpacked school where they always seemed overworked.

But in high school, I was lucky. The band director and choir director were literally the difference between me graduating with honors and me dropping out. At least, that’s how I see it. They were always there if I needed someone to talk to. They were kind, caring, patient, supportive, and more.

Through their music programs, I found structure and discipline. And any time I needed a quiet place to relax, their offices were always open to me. I really can’t thank them enough for all they did for me in those four years.

Similarly, many of my professors in college supported me, encouraged me, and gave me places of refuge to rest when I was overwhelmed. Several of them took me under their wings and encouraged me as I created and completed independent studies, developed my own major, studied abroad, and succeeded in graduating.

Friends

I have also been incredibly lucky in my friendships. Although I went through a period of toxic friendships at one point, I ultimately ended up finding some of the most incredible, patient, funny, compassionate friends I could ask for. They have been a constant support in my life even as I continually moved abroad and out of state, struggled with mental health issues and social phobia, was diagnosed with fibromyalgia, and generally was a pain in the butt. I truly could not ask for more dedicated and loyal friends in my life.

My parents

My parents have always been my strength. Through both mental and physical health struggles, they’ve never given up on me. They created a safe, sensory-friendly home where I could thrive and grow. They surrounded me with books, music, love, and opportunities. They encouraged learning, curiosity, imagination, and scholarship. From them, I learned compassion and empathy. They have encouraged my self-exploration, independence and independent thought, but they’ve made it clear that they are there if I need them. I’m truly grateful that they are my parents.

My Wife

I met my wife at a time when I was fairly certain I might be on the Spectrum and I was seeing a therapist to begin evaluating me. Even before we were dating, I felt safe enough with him to confide in her the truth. At this point, very few people in my life knew anything was going on with me, but I somehow knew that I could trust her with this part of me.

I was so lucky (I know I keep saying that, but it’s true!) to meet this person who is infinitely understanding, kind, patient, compassionate, and loving. She encourages my self-exploration and search for my authentic self. She’s patient when I’m having sensory difficulties and she’s held me through more than one meltdown. She accepts and loves me for me. She’s the only person who knows my soul. She’s such a positive light and I can no longer imagine my life without her.

I owe so much of who I am and what I’ve accomplished so far to the people around me. I’ve been so loved and supported, and in some ways I think that’s one reason I wasn’t diagnosed until 27. Through the efforts of the people in my support system, I’ve been able to succeed rather than flounder. Through their love and support, I feel like I can do anything.

Thank you from the bottom of my heart!

8: Super Gullible (Animatronic Chicks)

When I first looked at a chart of female Asperger/Autism traits, I vehemently disagreed with the idea that I might be gullible. Actually, I like to think I have a healthy amount of skepticism. But the more I reflected on my childhood, the more I remembered instances of being over-trusting as a child and teen.

One memory stands out vividly.  Shortly after a trip to Disneyland when I was about 8 or 9, we visited Chicago’s Museum of Science and Industry. They had an exhibit called “The Hatchery.” In the center of one room stood a massive, hexagonal, glass incubation case. It was filled with dozens of eggs and egg shells. I remember seeing the top of one egg move sluggishly as the chick inside worked to get out. I was absolutely blown away.

I turned to my dad with starry eyes and demanded, “Is it REAL??”

With a straight face, my dad replied something like, “No, honey. Remember how Disney had so many animatronics in their shows and rides? Amazing what they can do with animatronics now!”

I remember being so confused and torn between what I saw with my eyes and what my father was insisting. I remember he kept the gag going for a while before finally fessing up. I was really angry and confused.

Fortunately, I can laugh about it now and I bring it up anytime he tries to pull a fast one on me. We even have a running joke in my family where–anytime we think my father might be joking and trying to trick us–we say, “Animatronic chicks!”

This is only one instance, but there have been a lot like this one over the years. It’s taken a lot of effort and healthy skepticism, but I have gotten much, much better at spotting lies. I probably owe this skill to my father.

I sent my parents this picture from the museum’s current Hatchery website (with my alterations). [The unaltered picture can be found on the Hatchery website. I do not own this picture and this is not my father or myself. It’s included for comedic effect. Please don’t sue me. lol]

A still image from the Museum of Science and Industry's site. A father and young girl look into a giant chick incubation cage. A photoshopped speech bubble attached to the father reads, "Amazing what they're doing with animatronics these days!" A line at the bottom reads " 'Betrayal' circa 1997."
Photo credit: The Museum of Science and Industry

 

[Image description: A screenshot image from the Museum of Science and Industry’s site. A father and young girl look into a giant chick incubation cage. A photoshopped speech bubble attached to the father reads, “Amazing what they’re doing with animatronics these days!” A line at the bottom reads ” ‘Betrayal’ circa 1997.” ]

7: Japan—My Autistic Haven

I first went to Japan when I was 12 years old for a two week study abroad trip through my middle school. I loved it and continued to study Japanese culture when I returned to the US. I chose my university for its famous Japanese Language and East Asian Studies programs, participated in a month-long field study in Tokyo and Kyoto, spent my junior year at Kansai Gaidai University in Hirakata City, graduated with Japanese and East Asian majors, and finally worked in Japan for three years as an Assistant Language Teacher (ALT). Japan is one of my special interests!

There are so many reasons why I keep gravitating toward studying about, living and working in, and obsessing about Japan!

  1. The Japanese language–hierarchy: A large part of the Japanese language is made up of set rules and patterns based on who you are talking to. If you know your place in the hierarchy, you know how to talk to basically anyone. Don’t know if you are above or below someone in hierarchy? Just use the general polite form of language! It takes away so much guess work.
  2. The Japanese language–set phrases and ritual: There are many instances in Japanese when a formal, ritualized, or set phrase is used and you know exactly what you’re expected to say in return. There is no guess work or fumbling for a response. You just know exactly what to say without thought. For example, when entering or leaving a home or work environment, there are set phrases you say and set phrases others will respond with. When you say these phrases, you know exactly what the response will be (and vice versa) and that’s incredibly comforting.
  3. There are more clear social and cultural rules: It really helps that I’ve studied Japanese culture for years both on my own, while in Japan, and at university. It may have been different for me if I had grown up in Japan, but being able to study about a society has made some aspects of fitting in much easier.
  4. Being a foreigner: Being a foreigner in Japan affords great privileges and allowances socially. In a lot of instances, any effort made as a foreigner is an unexpected surprise which is praised. Efforts to behave culturally appropriately in Japan will be often be met with exclamations of surprise and delight while social missteps are more often seen as an unfortunate byproduct of being foreign.
  5. If I don’t pass as Neurotypical, no one suspects: Along the same lines, it’s much more likely that someone would assume my quirkiness or awkwardness is due to being a foreigner! Any social misstep or awkwardness is almost always attributed to just being a foreigner and coming from a different culture.
  6. Eye contact is not nearly as valued: Prolonged eye contact can actually be seen as very rude in Japan! Along with this, handshakes and hugs are not the norm, so it’s much more sensory friendly. People bow to one another and there are even rules about how low to bow depending on your hierarchical status.
  7. Less perfume/cologne bathers: People in general just don’t overdo wearing scents. That’s not to say that some people don’t, but–compared to the US–they are few and far between. This means a much more friendly sensory environment for me and less sensory overload.

When I am in Japan, I know more-or-less what is expected of me and what to expect from others. When in America? All bets are off. That’s not to say that everything in Japan is completely wonderful for me and everything in America is terrible. But I certainly have a lot less social anxiety in Japan and it tends to be more sensory friendly.

3: Small Talk & Eye Contact

Small Talk

[Note: As with every post on this blog, I can only speak for myself. Some Autistics are extroverts! I am not and this definitely contributes to my social limitations.]

I can become extremely fatigued when I have to engage in small talk. This fatigue is considerably lessened when I know the person I’m talking to; there’s just less to decode! But if it’s a stranger, I find it exhausting and often extremely pointless. To put it bluntly, I sometimes feel like my time and energy are being wasted. 

It’s not necessarily that I don’t want to connect with people. It’s not that I don’t see that person as worthy of my time. It’s that it’s very tiring for me to converse. If there is overwhelming sensory input around, it’s doubly so. Giving some of my precious energy to someone I don’t know and quite frankly will likely never meet again is very frustrating for me. I think that a lot of people probably like idle chatting. But when I’m really tired I’d rather stick to a friendly nod and possibly a few polite words. A stranger asking me how I am or what I’m doing or telling me about their grandkids or ranting about job stress? It’s just too much and might mean I can’t complete a task later on.

And yet, perhaps because it’s what society has programmed me to do, I wind up plastering on a smile and engaging in small talking more often than I’d like. My wife and I went into a store to buy a new wiper blade. There was a solitary employee behind the counter who was clearly bored and looking more-than-a-little lonely. He helped us and then he made a quip about a sports team playing that night. Now, I care very, very little for sports of any kind. But I struck up a brief conversation with him as he rung us up.

On our way home, my wife (who is even more introverted than I am) said, “You’re really good at pretending to be extroverted. You make it look effortless.” I was shocked and thought about it. “Actually, I’m really exhausted now,” I admitted. “I’m happy it seemed effortless, but that’s almost disturbing, isn’t it? I’ve gotten so good at faking it for other people.”

If I have the energy, I am willing to (and sometimes even interested in!) small talk with people whom I know I will build some sort of relationship with. If the chatting seems like it will lead to a relationship (professional, personal, or service-oriented) which will be reciprocal, I tend to put more effort into talking. I’m trying to get better at not engaging and forcing myself to converse with people that I don’t want to. This might come off as cold or even calculated, but it’s a survival technique to exist in a neurotypical world.

Eye Contact

I only recently realized just how very difficult and uncomfortable prolonged eye contact can be for me, especially if I am tired or overwhelmed. If the person is unfamiliar to me, an authority figure, or just intimidating, this doubles the discomfort. I don’t mind occasionally making eye contact with people that I know and feel comfortable with. I very rarely have any trouble looking in my wife’s eyes, for example.

Eye contact seems somehow inherently personal to me; it’s a private look into someone. It sometimes feels like if I look someone in the eyes for too long they will see right past the walls and into who I truly am. It can be incredibly unnerving to feel like someone is scanning my mask, analyzing me, and searching for cracks in my facade of social competence. It can feel really invasive and creepy.

When I do make eye contact, it’s just another thing I am hyper-aware of:  Don’t look away. They’ll think you’re dishonest or insincere. Is this enough eye contact? Ok, they looked away. I can rest for a while. What facial expression is that? Why did they move like that? Am I making too much eye contact? Not enough? UGH, I can’t concentrate!!

I’ve found that that inner dialogue and monitoring can be so distracting that I can focus on a conversation more clearly by not looking at a person. When I do this, however, I’m still plagued with thoughts like: Is it weird to them that I’m staring out the window? Do they think I’m not engaged? Have they noticed I’m not looking at them? More times than I can count, someone I’ve been speaking to has looked over their shoulder to see what I’m looking at.

Damned if I do, damned if I don’t, I guess! 

2: Meltdowns & Pillars

Meltdowns

It’s rare that I have a true meltdown. I do experience sensory overload (which I’ll talk about in another post) quite often, but a meltdown is a true collapse of my ability to function. I often hyperventilate. I cry or even wail uncontrollably. Sometimes I rock or sway or thrash or bang my hands on the ground. Other times I’m mute and stare blankly ahead; I may become unresponsive. I literally can’t even think about completing even the simplest of tasks.  I become needy and childlike and feel vulnerable and broken. I go masked, “normal” person to fully, obviously Autistic in 30 seconds flat. Not many people have seen me this way.

In the last year or so, I can think of three significant meltdowns:

  1. During the process of moving from Japan after 3 years living abroad.  I knew it would be a stressful process so I planned well in advanced, did everything I was supposed to (and more), and thought I was ready. I should have been more than prepared and it should have been a fairly painless process. Then some insane wrenches were thrown into the mix which involved unexpectedly needing to facilitate moving furniture across the city in a short amount of time with: a car/van, international license, and manpower which I didn’t possess all while attempting to pack, clean, and prepare for returning to the United States. I was dealing with grief over leaving my job and friends, a strong sense of shock and betrayal toward the people who had ruined all of my planning and hard work, and my fears about returning to the US. This was by-far the largest meltdown I can remember having and it was actually really terrifying for me (and my wife!).
  2. After a post-wedding bridal shower planned by a family friend for my wife and me. There were so many emotions that day, but the biggest drain was the mix of people who attended. There were friends from my middle and high school days, kids that I used to babysit as infants who are now taller than me, coworkers of my mom who I grew up looking up to, my wife, and my family. In that mix of people, I had no idea which mask to wear or what role to play. I couldn’t relax and be with my friends and show a more immature side to my mother’s coworkers. Nor did I feel entirely comfortable being my old babysitter side around my friends or family. I couldn’t even act like I do with my family or with my wife. I felt awkward almost the entire time. It was a lovely day and I had a lot of fun, but just before bed that night, my body and mind told me they had finally reached their limits. This was a mini meltdown and more akin to an anxiety attack due to exhaustion.
  3. During the moving process into our first official apartment together as a couple. This meltdown came after a day or two of the moving process, sitting in the car on the dreaded highway 40 minutes each way, unloading a storage unit into cars and trucks, hauling boxes inside, etc. While we were trying to fit our brand new couch through an unexpectedly (nearly too small) narrow doorway, I got a text abruptly changing plans for the remainder of the day and I had finally had enough. I felt the tension and panic build until I finally collapsed on the recently (triumphantly!) settled couch. I couldn’t bear to do one more thing until I rested. I cried and rocked and my wife and mom tucked me in on the couch to nap while everyone went to go get another load of boxes. This was a medium-sized meltdown which left me helpless for a while.

Pillars

When describing my meltdowns to my newest therapist, she said something that really hit home and made a lot of sense.

She held up her hand and touched each finger as she said, “Mental, Physical, Emotional, Social, Sensory. Each of these has a threshold. Most of the time, you’re able to keep at least some of them in balance and are able to handle things. You’ve developed ways to deal with a lot:  overstimulating things, constant pain from fibromyalgia, your social anxiety, etc… You’re constantly pushing you mind and body. But sometimes, when all or most of these pillars have been overtaxed for too long, your body and mind just can’t take any more. Things need to shut down for a while to compensate.”

This is the perfect explanation. When looking at the three meltdowns above, I can see the pattern well. These were already high-stress situations, but nine times out of ten I can handle the stress. Over the years I’ve developed ways to deal with a lot of challenges and function pretty smoothly in most situations. It’s these unique times when the majority of my pillars have been too overburdened for too long when I snap and cannot handle anything further.

I sometimes think of these pillars as video game stat bars. Sometimes I can almost feel one of my bars blinking red. LOW HP! ABORT MISSION!! If I’m out socializing, my meter dips further and further toward the danger line. It starts out at half if the environment is noisy, crowded, or bright. If I overexert myself, I’d better hope that I haven’t exerted myself too much in the other categories, otherwise I will have no choice when my mind and body shut down for a rest.

Meltdowns are not “tantrums” and I have very, very little control over myself when I have one. I am vulnerable. I am scared. I am exhausted. I dread the day that a bad meltdown happens around friends or even strangers, but I have hope that someone around me may recognize my needs and help me to a quiet space where I can refill my pillars.

You can hear more about my meltdowns and shutdowns and the pillars in my YouTube video:

1: Operating Manual

It sometimes feels like the average person is given a metaphorical operator’s manual at some point in their early socialization. Maybe not a completed manual, but a pretty solid start on one. This manual details the basics of both verbal and non-verbal communication. Where there are gaps, the user naturally picks things up from those around them and the lessons appear in their manual for later reference. I like to think that most of those people are given a Windows operating system manual. It sometimes feels like-not only was I given a Mac manual-it was given to me with whole pages torn out or missing, lines drawn through or fuzzed out, sections written in a different language….

The majority of people seem to be able to refer directly to their manual or learn quickly from others what to add to theirs, pages being organically added to their operating guide with relative ease. It feels like I’ve had to cobble together the missing pages based on social research, observation, and sheer trial and error.

I’ve taped in handwritten pages, crossed out, and rewritten…only to rip out pages and start all over again. I’ve made wild leaps to “normal” behaviors based on what I read in novels or saw on TV or watched in anime. My manual looks like the world’s most scatterbrained, sleep-deprived college freshman used it for note-taking with memos scrawled in the margin, half-erased, and stained with no small amount of tears staining the text.

Over time, my operating manual may look as thick as someone who naturally came built in with an easily created, neat one. But in actuality, my operating manual is a book made through struggle and not-a-little suffering.

While most social users seem to be able to learn from their manual and then put it aside (referring to it only in rare cases such as “What do I say when I need a break from my partner?”), I almost never put mine down. I’m constantly referring to it (for the most part subconsciously), recording results, and grumbling over the inconsistencies and the infuriating lack of any 100% certain, rational pattern in people’s behavior.

No wonder social interaction leaves me so drained. It’s a very rare person indeed that makes me forget about all (ok, MOST) of what I’ve cobbled together into my manual, set it aside, and just BE with them. So rare that I can count on one hand the number of people I can completely stop analyzing (again, mostly) and just interact in whatever way comes to my mind.

It’s exhausting.