I completed this interview under Jackie Schuld’s questions. She has conducted a whole series of late-identified autism interviews with people. https://medium.com/@jackieschuld/list/late-identified-autistic-interviews-f6214bb999ce This is a personal expansion to the interview she posted of me previously.
How old were you when you learned you are autistic?
At age 23 I began researching in order to possibly find reasons why I was the way I was, why I seemed fundamentally different and had major struggles socializing, connecting with people, and feeling safe in the world. At that point in time everything had kind of come to a halt because I was overwhelmed with life, unhappy, unfulfilled and stuck, and felt profoundly disconnected.
But actually, in my late teens, I had come across some information on Asperger’s syndrome and was like, ‘huh, I seem to fit the bill’…maybe not some particular aspects that were described, like narrow and special interests, rigidity, and one-sided conversational style, but I definitely related with the core struggles. I showed my mom and her reaction was essentially something like, “Yeah, uhuh. That’s interesting. I guess I can see that.” I just got the impression that it wasn’t a big deal, that if it was, doctors and society would know it and be doing something about it, if there was anything you could even do about it. Plus, I didn’t need supports in my life — or so I thought. I went to school and I did stuff with friends like a regular kid, was intelligent. I had my struggles, but who doesn’t? I just had a bit more than everyone I knew and was extra sensitive. I could make it in the world if I could find my bearings. So yeah, interesting read, but onto the next thing!
Though when my life came to a halt at 23 and I was looking for answers, I again came upon information on Asperger’s and I was like, ‘oh yeah…’ This time I took it more seriously and read a lot more about it, and the more I read the more it supported my belief that I did have it. It’s understandable for my mom to have reacted that way. That’s the society we live in. There’s nothing super-obviously uber different about you, so what’s the big deal? My family had no awareness of it — the general era I grew up in was sorely lacking in that. So really, it was a case where we probably wouldn’t have found any resources for a lower-support-needs person, especially in our midsize non-destination suburban area with our lower-class income.
What autistic characteristics do you have?
I’ve got a plethora of them!
I’ve felt like I spoke a different language and occupied a different reality from those around me. I’ve felt different/alien, and have also had people point out my differentness all my life. In my younger years I would make a lot of social faux pas and I can still make them. I have to actively keep social rules in my mind in order not to break them, and feel like I have to be actively cognizant of typical mindsets so that I’ll be more on the same page as those around me.
Interacting with people was never my forte. It was normal for me to not know how to interact with people in many situations, and to hold back for fear of getting something wrong. I learned to do that at a very young age because I learned quickly from my mistakes, even if I didn’t quite understand what happened or why someone got upset. It was very pervasive. Once, when I was eleven years old, I was visiting extended family and my uncle took my brother and I to Blockbuster. There was a movie I really wanted to watch and he conceded to rent it on the condition that I most definitely would watch it before it was due. I enthusiastically agreed and fully intended to keep the deal. At the house, my grandfather told me whenever I was ready to watch the movie to go get him so he can show me how to start it. The days started to pass and there were a few times where I wanted to watch it but I did not go ask him to start the movie. This is because I could not figure out how to approach him or when a right moment to do so would be. I didn’t want to get it wrong or look dumb somehow, and it caused me so much anxiety I could not bring it up. I couldn’t approach my uncle either for the same reasons as well as being unsure if the same thing applied to him, and not just my grandfather, about starting the movie. I had operated a VCR before, and might have figured it out if I tried, but that didn’t seem to be an option, since he’d said I had to go to him if I wanted to watch it. I didn’t have much of a relationship with them because they lived several states away, but still…they were my grandfather and uncle, not some strangers! The day came around when the movies were due and my uncle asked me if I had watched it and I had to say no. He got angry at me and I felt really bad, but how do you explain what happened? I knew that it would not be seen as a legitimate excuse and that the difficulties I had were not really normal or believable so I just shouldered the blame and resigned myself to being seen as something I was not — a flip-floppy person who isn’t firm in their decisions and who takes their word lightly.
My dad, who was around until I was two, told me how he’d sit with me for hours when I was a baby trying to get some kind of response or interaction from me. I didn’t respond like a normal baby would.
There’s the tendency I had and still do to some degree to not seek out interactions in an everyday setting. I wouldn’t see the purpose in a lot of the interactions I witnessed or that people tried to engage me in, and didn’t have a natural sense of interconnectedness with people.
I’ve tended to have this natural flat affect where my voice would not have much inflection, I wouldn’t really speak with body language like others, and it could be the case that not much emotion would show when I engaged with others. When I was a toddler, I got the nickname Stone Face because whenever my mom brought me out in public or around people I didn’t know well I would affect an expressionless face, sit very still and not interact with people. I recently realized that this was probably a freeze reaction from being socially and existentially overwhelmed. I could be expressive and interactive around my immediate family but with hardly anyone one else.
For some time as a young kid I had selective mutism.
Also, when I was younger, I disliked being touched and hugged by anyone other than my mom, but endured it. With a friend in high school I was comfortable enough to playfully show that I preferred not to participate in hugging — she was a real hugger — and it became a kind of game between us where she’d go in for a hug and I’d run away…now I can see that wasn’t normal.
It can be uncomfortable for me to be in a small space with someone else where we’d be coming into close physical proximity (such as a small kitchen) unless I’m really comfortable with them, because it’ll feel like an invasion of space and they might touch me. It can be a little unsettling to be in physical contact unexpectedly but I do recognize that it’s a normal occurrence and don’t hold it against people. I think this is why my older brother, who is also low-support-needs autistic, would aggressively shove my step-sister and I away from him if we were passing through the hallway at the same time as him or if we tried to go into the kitchen when he was in there already. He wouldn’t do it to my parents though, because there’d definitely be consequences. There’s no excuse for his behavior though — being a shithead is being a shithead.
There’s a definite difficulty with eye contact (a classic) — I have to force it much of the time and it can cause mental dissonance and overload.
I have ‘strange’ body postures, movements, and mannerisms — the way I sit, the way I walk, the way I stand, the way I talk, the facial expressions I make, etc. People have repeatedly made comments on all of those things.
People regularly take me the wrong way and misinterpret my words and actions.
I’ve figured out that I don’t seem to naturally give off the cues, necessarily, that people expect to see which would help them to feel secure and comfortable around me and that I’m someone they can relate with. On the other hand, I think I learned to overcompensate for that by being really attentive around people I’m with, really responsive in the right ways to ensure they felt seen, heard, and validated, maybe at times being overly smiley and agreeable. I guess sometimes it could come off as cut-and-paste inauthentic kind of behavior to those who were more scrutinizing and observant. This would be masking behavior.
Just as people didn’t seem to understand me, I could have a lot of trouble understanding their reactions and thought processes. In the same vein, I could have a hard time following movies and shows. If my family were watching a movie together, I’d be saying things like, “What just happened?”, “Why this, why that?”, “I don’t understand”.
Within communication, I’m not natural at picking up on implied meaning, nor very good at reading between the lines.
I’ve always tended to be rather literal minded, and can also have difficulty catching onto humor and sarcasm,
I have a deficit in putting things into context. For example, I once saw someone I knew at a store and she asked me how I was doing and I said I was doing so-so. Then she asked, “What’s going on?” And I replied matter-of-factly with what’s been occupying my time lately. I only realized after the fact that her question was a continuation of the statement I had made right before. I put the pieces together afterwards when I realized that the strange look that had come over her face as I was replying to the second question meant she was expecting a different kind of response. Or a time at work when a coworker showed me the ropes on how to mop properly, left and came back later, asking, “How’s it coming along?” I said, “How’s what coming along?” “The mopping!” He replied quite emphatically, indicating by his response that he thought it was dumb of me to not have pieced that together. And yeah…it would be quite obvious to a neurotypical, but for some reason autistic brains don’t work that way naturally. Things like this can make me seem stupid sometimes, even though I’m really not.
In the first scenario I didn’t have the social expectation that she’d respond to my expression of unwellness. In the second scenario I didn’t automatically deduce that the mopping would be the most likely thing he’d be referring to. In my mind he could have been referring to any number of things. Nor did I automatically tie it to our previous interaction. Having an autistic brain can mean that you’re not seeing and filtering things through the same kind of hierarchical system of focus and meaning-making which is more natural to a neurotypical brain. There are certain societally accepted, ‘predictable’ ways people interact and communicate, some of which are not easy for an autistic person to assimilate into their toolbox, because those methods can kind of clash with how their brains work. Or it may be they’re processing so much or perhaps overwhelmed in the moment that less brain power can be devoted to the intricacies and nuances of interaction and communication. In the split second pace of social interaction there isn’t much time to analyze where someone is coming from or what their expectations would be. Sometimes I’m able to be on the same wavelength as others in this kind of situation, sometimes not.
In both the scenarios, it wasn’t explicitly specified what they were after, such as, “Why are you feeling so-so?” or even, “Why is that?”, and “How’s the mopping coming along?” I was expected to pick up on their train of thought and zero in on a particular target, although the words they used were not so specific.
I’ve had an interesting relationship with language. I will speak in a more formal manner or with words that others around me don’t really use. I was hyperlexic from a young age, reading quite above my age level. I enjoy echolalia, as well as speaking words and phrases just because I like the sound of them (I did that a lot at home as a kid…I knew not to be ‘weird’ outside :P — some of my favorites were ‘mint’, ‘tin’, ‘mandatory’, ‘moo’, ‘frozen’, ‘chicken noodle soup’, ‘toast’, ‘Henry’, ‘banana nut bread’, and ‘Humphrey’— I recognized the oddness of saying random words and I equally enjoyed that as well). I even turned some of those words into nonsensical verbs: Someone would ask me what I was doing and I would say, “I’m minting!” or my brother would annoy me and I’d tell him, “You’re so frozen!” I amuse myself in strange ways… My mother babysat from home before I started school and she once received a worried phone call from the mother of three siblings who had started using a new ‘swear word’ after coming home one day from our place. They were saying the new word I had taught them, to be used when frustrated — ‘boxy’. It sounded like an angry word to me and it seemed perfect in that context. I remember us going around the house pretending to be angry and spewing, “Boxy!” My mom assured their mother it wasn’t a new cuss word.
I definitely have sensory sensitivities. I’ve always disliked electric lights…when I was still in the crib and my mom would leave a hall light or even a nightlight on at night I would whine until it was turned off, and as I got older I really disliked someone turning on a light in the room I was already in…it just didn’t make me feel good, felt like a bother to my senses. Now, in my dilapidated physical state, it seems to affect me even more to the point of draining me, whereas, before, I could tolerate it — these days I’ve learned to bring a hat or visor with me if I end up needing it in situations where I’ll have to be under electric lights with others because others can’t seem to function without them! Too many sounds going on around me can really overwhelm my system — Loop earplugs have been a lifesaver…I wonder how they would have made a difference if I’d tried something like that growing up. Up until my twenties I really did not like bathing, especially showering, and I would do it as little as possible because it felt like a shock to the system. Although I could go swimming with people because I felt like there was more of a point to it and your focus was on having fun, not just to cleanse yourself…eh, I could do without that. I remember one time when I was late elementary age I was invited over to a playdate at someone’s house with maybe four other girls. We went swimming and then they all wanted to take a shower afterwards. I was surprised by that because I never did that at home or at my neighbor’s house. Guess you’re supposed to rinse the chlorinated water off…eh, I could do without that. But of course I followed the crowd, and it ended up being a sensory onslaught! They turned the water to what felt like scalding to me and the showerhead was sending down a harsh spray, and they were asking me why I was holding my arms up in front of me. The shower heated and steamed up so much that I felt I was suffocating so I was having to crack open the door and get oxygen, and they thought that was weird too. To me, they were the weird ones! Like, how are you guys so impervious to these extremes?
Overall I have a sensitive system — I’ve always had the tendency to break out in hives now and again. My skin is sensitive to products. One time I used a prescription acne cream and I woke up with my face all puffed up and my eye nearly swollen shut. From ages one through three I had severe asthma. Nowadays I’m quite sensitive to caffeine and have developed sensitivities I didn’t used to have — soy gives me hot flashes, food coloring makes my brain feel like it’s on fire, maltodextrin seems to mess with my automatic nervous system, artificial sugars will make me dizzy. I had to find all this out by trial and error and reading nutrition facts.
I have heightened senses: With hearing, if there isn’t much background noise, I’ll be able to overhear really quiet conversations people think others can’t possibly hear. When I was growing up, the clock ticking in the living room would keep me awake while I was in my room down the hall with the door closed. I once identified a pipe leak under the house that no one else picked up on. With taste, I was a picky eater growing up — there was a period of time where I would only eat cheese and pretzels. I can tell when something is starting to go bad or the water needs a new filter before others can. With touch, growing up I refused to wear tights, jeans, lace, and tighter fitting clothing…my mom said she could not dress me up in cutesy little girl outfits or I’d melt down. I had to wear my socks inside out because of the seams, and tear out labels from my clothes — not just cut them out because there’d still be a bothersome scratchy edge there, so many of my shirts ended up with little holes at the nape of the neck. My clothing sensitivity is not as bad now but I can find myself regularly pulling at tighter clothing or clothes that are layered and have to alter anything that is digging into my armpits, like lowering the armhole of certain tank tops, and thankfully I can do that because I know how to sew. I will also still sometimes wear something inside out if I’m feeling especially sensitive to seams that day. I’m used to going barefoot because I just did not want to bind my feet in shoes when I didn’t have to. I feel like I’m more sensitive to pain. With smell, I can have stronger reactions to bad odors. I also can really enjoy smelling things — I had a funny quirk in my high school group of friends where I would ask to smell their food at lunchtime…not taste it…just smell it.
On the other side of the coin I can appreciate sensations that others may pass over. I really like the feeling of soft or nubby things, squishy things, textures (e.g., when I play ping pong I’m very drawn to press my thumbs onto the hard black nubby back of the paddle, and that will actually throw my game off a little :P). I like the feeling of chewing crunchy foods with my front teeth (it makes me look like a giant hamster) and squishing things between my lips. I once got this water bottle that I was enthralled with (as an adult) because the lid would pop open with a satisfying *pop* sound when a button was pressed. I purchased a pair of tennis shoes in pretty new condition at a thrift store a few years back, and as I was walking around in them, to my delight I found that they suctioned to the floor when walking on smooth surfaces and would make little popping sounds as I lifted my heel. It’s probably the reason the person donated them. The particular cutout in the heel made this possible, it seems. I learned how to step just so in order to get them to suction and it was quite a pleasurable stim to walk around suctioning off the ground, going *pop* *pop* *pop* *pop*! As a little kid I loved to sit in patches of sunlight for the feel of the sun and to watch the sparkly dust specks float by, to be under the lattice awning in our backyard, which made really cool patterns of light and shadow on everything beneath it, and to sit under the big tree in our front yard to gaze up at the leaves and the sky peaking between them and the dancing light and shadows. I’d be mesmerized by those psychedelic screensavers that used to be popular before laptops became common, where colorful shapes would twist and morph endlessly.
Sometimes I can have an auditory processing delay where my brain can have a difficult time keeping up with the pace of conversation or I might be overstimulated at the time. When that happens there can be a significant delay between when someone says something and I process and am aware of what they actually said. This is one reason why it really helps to have subtitles on when I’m watching something — another reason is that it can be hard to isolate the voice from the other sounds going on in the soundtrack.
Other sensory processing difficulties include having difficulty understanding what people are saying in loud environments or with lots of background noise, even when others are not having trouble with it, and despite my supersonic hearing. A lot of movement around me can make me disoriented and I can kind of lose my place in whatever interactions I’m a part of. Sometimes my awareness of the immediate environment can be dimmed when I’m processing a social situation, and vice versa, the effect of the environment can take away from my ability to process and be more present in interactions. For example, I have good coordination and awareness of my surroundings, but it can be quite a different story when I’m participating in a social setting — I may well walk straight into a piece of furniture. The other way around, it’s really hard to tune out the noises and awareness of other people about the area, and it all kind of integrates into the immediate experience I’m having, so that less of me is able to focus on the ‘closed interaction’ of the people I’m with…it seems to add more weight, vibrancy and complexity to the general vibe and energy of the interaction and experience I’m a part of.
Here are a few scenarios which show the difference it could make in having less input and social dynamics to process:
In elementary school a couple teachers sometimes led the class in a game called Heads Up Seven Up. The way the game was played was all the lights were turned off, everyone hid their face in their arm on the desktop, and stuck out their thumb. Before that, seven kids were chosen to be the ‘pickers’ and once everyone else had their heads down they would walk about the room and choose someone’s thumb to touch and the person they chose would put their thumb down. Once everyone had chosen their mark and were back up in the front of the classroom, the lights were turned back on and the kids with their thumbs down would get to guess who chose them. The interesting thing is that I noticed a marked difference in my constitution during this game — the lights were off, the classroom was totally silent except for the shuffling around of the kids walking through the aisles for those few minutes, there was no visual data to process. I would feel a rush of calm, of happiness, excitement, energy, oneness with those about me. I felt comfortable…I never really felt comfortable. I knew my thumb might get touched but I was ready for it and it was exciting when you got that tap and were selected! I absolutely loved feeling so present and relaxed while participating in an activity with others, the anticipation of waiting for a thumb tap, the shufflings of the pickers, hearing them coming nearer or moving away, someone perhaps whispering, “Yes!” when they got chosen, the smell of my arm and the desk (I still remember the desk smell — it had a glue-like scent), feeling certain in how to go about things, the calming darkness. Once the lights were turned back on I felt like I had been rejuvenated, and it was still pretty quiet as each chosen person had a turn guessing their picker. I’m sure it was somewhat relaxing and exciting to other kids, but the difference it made in me was really significant. I didn’t feel that level of happiness or ease anytime else at school.
Something similar to this is how, when my group of friends in middle school would go quiet for a window of time, which didn’t happen very often, I might suddenly come alive, find words to say, become expressive. All other times I could barely do the bare minimum, which was give very short replies or show tiny reactions when directly engaged. I was really, for all intents and purposes, a prop in that group. I could not interact like a normal kid. It was almost earth-shattering when I was the first to speak up or say more than a few words. I think I was too overwhelmed and confused by group dynamics to be able to integrate myself into them. But those quiet times I suddenly seized upon were not exactly the right times to establish myself as an engaging person…it’s more when you engage in the faster back-and-forth times with higher energy, normally, that you really establish a place amongst people. Plus, being such a passive person who didn’t give off any commanding cues or talk in a normal socially-prescribed manner, I wasn’t seen as someone to take a lead off of — it was usually just awkward silence after I tried saying something, and I didn’t know what to do after that.
This is a very awkward but also funny scene that happened in kindergarten: I was using the restroom in the classroom and another kid accidentally walked in on me because I hadn’t shut the door all the way so that some light would come in and I didn’t have to turn on the overhead lights. He saw me sitting on the toilet with the hugest toothy smile on my face, holding onto the sides of the toilet, arching out my body and jutting out my chin. So…the kind of experience I had in kindergarten, being in a classroom of kids and an authoritative adult, being introduced to certain social protocols and the ways others behaved and how I’m supposed to fit in…it was all a bit much. I felt uneasy, out of my element. I felt tripped up and trapped inside myself, self-conscious. Well, by nature I was a very happy person, loved to enjoy life. I remember my brother even commenting that I smiled a lot, when I was late elementary age. So when I was going to the restroom that day in kindergarten I saw it as an opportunity: I’m all by myself, no one can observe me, I’m not overloaded and confused in here — I need to get my smiles in! So yeah, I continued sitting on the toilet for a good couple minutes grinning my biggest grins.
Did you seek out therapy, coaching, or other forms of structured support for autism?
Not really, just one therapist who was supposed to specialize in autism, but that didn’t work out for me, we weren’t syncing. It had seemed to me until recently that there isn’t anything out there that could help me since I’ve gone all my life learning to cope in my own ways, and had thought that timeframe had passed. But as people are becoming more aware of neurodiversity these days and the intricacies involved in living with a ‘low-support-needs’ disability, it seems more things are popping up, such as coaching specifically for those on the spectrum, and I may try that. I have gone to a couple free meetup groups for autistic people and that’s interesting to attend every now and again. I was active for some time on a Facebook autism group that was good for receiving feedback on questions and seeing all the topics being talked about.
In what ways have you noticed you’re different from neurotypical people?
It’s been pointed out quite a bit that I have a childish/innocent way or aura about me in my facial expressions and mannerisms. People have also described me as enigmatic, mysterious, fairy-like, hard to pin down.
I can kind of drift off into my own world, zone myself out from the social goings on if I’m in a group of people…I might focus less on the interaction for some time or suddenly start participating much less, or even wander off a little. There are various reasons for this. I can be not as invested in what’s happening around me as neurotypicals are. Or it may get, frankly, uninteresting/unnecessary/irrelevant in my view, so diverging from that means doing something that’s more interesting or worthwhile for whatever small amount of time that will be. Also, I certainly don’t have as much ability to effectively immerse myself in typical social interactions as others do and so I’m already kind of half-in half-out. Finally, it can also have to do with regulating my internal state so that I don’t get overwhelmed and overstimulated. Socializing can be really difficult sometimes. There are times I wish I can be more immersed and interactive like others but I am wired differently and have not been able to hone my skills very well in that area. I can only accept who I am and continue working on where I can grow.
It hasn’t been very natural for me to make little interjections such as ‘uh-huh’, ‘oh, I see’, make reactive facial expressions, etc., while someone is speaking to me. But I noticed that the majority of people do that so I learned to force myself to do that as well, and it is a bit draining having to consciously pay attention to that aspect. It can make it more difficult for me to process what they’re actually saying. And it sounds weird, but it can be distracting to me when the person I’m talking to does those things in reaction to what I’m saying.
I have less tolerance for certain things. Small talk is difficult and annoying to me, “babbly” talk, which is not very focused and is very wordy or fast-paced drains me quickly and hurts my brain. Constant talking, which is unfortunately kind of the norm when people are together, can be quite tiresome to me and I wish people would take more breaks from speaking…pardon my saying, our mouths don’t need to be flapping incessantly! I find that my tank will be draining away the longer I’ve been processing people speaking. This is why I have to really be in the mood and energetically aligned in order to listen to podcasts or attend online meetups.
In my mid-twenties I had a surprising realization while in my room that my mind was processing what the TV in the living room was saying. All my life beforehand it had been garbled ‘wah-wah-wah-wah’ sounds, kind of like the teachers in Peanuts. I had the ability to completely bypass the words and relegate it to mostly inconsequential background noise. Actually, this was also true for conversations happening around me — I was just doing my thing in my world and if I wasn’t interested in what they were saying or it didn’t involve me, one could not expect me to have picked up on it. Though if I were really trying to focus on something like schoolwork, I wouldn’t be able to focus because of that noise, but still, I wouldn’t necessarily be hearing sentences. This sudden shift in processing speech happening around me has positive and negative aspects. The positive is that I see it as proof of the strides I’ve made in my attempt to gain more skill navigating social life and integrate myself more with the way the world works around me. The negative is that it comes with sensory overload. It’s like my brain wasn’t built to be aware of and process all the speech that I hear throughout the day…I’m sure there’s a more complicated or nuanced explanation than that, but we’ll leave it at that. When I overhear the TV and my brain is automatically processing the sentences and words that are continuously streaming forth, it’s like ‘Aaaaahhhh! Make it stop!’ To me it’s like all this unnecessary information and chaos being hurled at me. This difference in processing speech has also even affected my reading! I now hear the words in my head as I’m reading a book, and that didn’t used to happen, and I wish my brain hadn’t started doing that…it’s bothersome. So I have to take into consideration that the speech processing difficulties I’ve had in life could have actually been a positive developmental outcome for my brain and system, so I wouldn’t get overloaded.
Emotional-based thinking and reacting in others, when it confuses things / goes against logic or when it brings unnecessary negative energy to an interaction, is not compatible to how I process things and will be overly stressful and exasperating to deal with.
Inconsistency from others can be difficult to process. I’m especially sensitive to rejection (“rejection sensitive dysphoria” is not an uncommon occurrence in neuro-atypical people).
Plans changing can make me feel suddenly unmoored. I’m not going to flip out but it can take a bit of adjusting sometimes.
Driving is quite a bit of fast-paced information to process when behind the wheel and my brain will be stimulated to its capacity 30min-1hr of that activity and I’ll need to pull over to take a break (I’d be able to go somewhat longer, though, if I didn’t have chronic fatigue). Interestingly it was pretty okay for me to work as a seasonal personal vehicle driver with UPS over the Christmas season. I’d work 4–8 hr shifts. Part of that was spent at the center sorting and loading packages but then I’d be out driving to my designated neighborhoods and making the rounds. I found the constant breaks in driving helped me to not get so overwhelmed by it, having to stop, get out of the car, and walk up to houses to deliver packages. It was like a little reset every time I did that, and it was good to be moving my body.
Loud noises can feel painful and overstimulating, crowds can cause disorientation and overwhelm. Fluorescent lighting makes me dizzy and fatigued, EMFs can give me brain zaps, dizziness, fatigue, chest pains, and/or heart palpitations from being around them enough or if I’m in a weak state.
The manner in which I respond or make statements have tended to be either slow and measured or kind of choppy, like in little bursts, while taking breaths in odd places, as if I have to process what I’m going to say in little chunks at a time. It can be kind of hard for me to think and talk at the same time XD
I find it really difficult to speak for any length past a few sentences. I really start feeling the spotlight effect and my anxiety will rise and my thought process can just halt. My ‘blending-into-the-background’ instincts really kick into gear. When I do have to speak at length, such as having to explain something (especially about myself), my words can get very jumbled because I won’t be able to hold a cohesive train of thought. Plus, the other person’s responses can distract my train of thought. Even anticipating someone cutting in can cause my thoughts to freeze up. But even if I didn’t have the anxiety, a couple other things will get in the way, one being that I’m a very non-linear thinker. I’ve been told quite a few times that I’m being vague and nonspecific when I answer questions…like they want more concrete details and examples and narrowed conclusions, whereas I’m in more of a seeing-the-big-picture, seeing-things-from-different-angles-at-once, sort of philosophical mode. I think I can also process little details quickly — I’m very much an independent and internal processor, and don’t even think to share my process with others, not to mention it can be quite a process to go back and tease apart and explain everything that went into certain statements and conclusions.
The other thing that gets in the way is that it’s simply hard work putting words to how I experience things — it’s like I have to force myself into a different mode of being in order to communicate. I naturally don’t think in words, and it’s always felt like I have to translate what’s inside me when I am communicating instead of it just flowing out naturally. It can even be like I’m condensing down into something more defined and contained in order to be in an experiential mode that fits with those around me so as to engage with them and bring words forth from that point of view. (I also say abstruse sentences like that last one XD and the poor people have no idea what I’m saying).
I can have a lot of difficulty being the center of attention. It can feel a little frightening. Even something as small as it being my turn in a conversation can make me feel uncomfortable because the focus is then on me and my output. I’ll be tripped up even simply by the fact that someone is looking at me.
Though my brain could work fast and efficiently in some ways, in other ways it seems really slow. I seem to take longer than others in processing what people say and the message they’re getting across and also in coming up with my own responses. That’s one reason why group dynamics are so hard for me. They’re typically fast-paced and jump from person to person, so there’s a lot of information to be processed and words won’t necessarily jump into my mind to add to what they’re discussing. I may think of something or have been able to organize my thoughts coherently enough, but too late because another topic is now on the table.
I can have difficulty keeping up with more complex situations and conversations.
If there is some kind of controversy between another person and I, I can sometimes really struggle coming to a clear understanding of their point of view and struggle in explaining mine. I can get so stressed out that I may not be able to think very coherently.
I have a super difficult time getting into a flow state where my mind and emotions and my relation with the environment and the people around me are syncing up and I’m able to just naturally *be* moment-to-moment without feeling tripped up or blocked in some way, where I feel comfortable and secure and sure enough to fully immerse myself in the reality about me at a foundational level. I feel that this is just a given, everyday ability for most people, whereas I’m left feeling like Pinocchio, still wishing for my chance to be a ‘real human’.
Do you experience any other mental or physical differences (including disabilities, other neurodiversities, etc.) that impact you?
I was diagnosed with social anxiety when I was 14, major depressive disorder in early twenties, although I contended with it since my mid-teens. I identify as being an HSP (highly sensitive person). I believe I have inattentive type ADHD. Along the path of being murdered by life, I developed CFS (chronic fatigue syndrome) and long-term DPDR (depersonalization-derealization).
Family and Relationships
How did friends and family respond when you told them you are autistic?
My parents didn’t have much of a reaction at all, like they had no opinion of it and didn’t care to talk about it. Their view is like it’s just something you’ve got to figure out how to deal with and it’s not a big deal. A lot of people have a kind of blank response like they’re unsure what to say. Lots of people don’t even know what it means to be autistic or they just have outdated media depictions of it in their heads and are caught off guard that a normal-seeming person is saying they have autism. I’ve also had people try to convince me that I’m not before even trying to come to a good understanding, or they’ll act skeptical about it. But there are also people who seem accepting of it, even if they don’t really know what it means. What I don’t get a lot of is people seeming interested in understanding what it means, asking questions. But I don’t expect them to and I’m not going to give them unsolicited information. I guess they just don’t care about understanding or maybe are uncomfortable about the topic.
Is there anyone else in your family who is autistic?
My brother is. We both independently came to the conclusion that we are on the spectrum without knowing that the other was researching it for themself. We weren’t even in any contact, actually, and found this out about each other while conversing during a family gathering. He’s had difficulty in the socializing, communication and friendship/relationship departments and experienced bullying at school. I have a cousin who’s diagnosed autistic, although I never met them because that side of the family keeps their distance.
I suppose both of my parents have certain autistic-like traits, although I’m not sure I would pin them as qualifying for a diagnosis of autism spectrum. My dad has light sensitivity, sensitivity to crowds and too much talking, sees a lot of social behavior as inauthentic and dumb, spends a lot of time alone by preference. My mom has to have total quiet when she’s talking on the phone, has difficulty following movies, has light and sound sensitivity. Both have had a lot of social anxiety throughout their lives.
Part II here:
