khangowrites

[khangowrites]

A Stimming List I Had Fun Doing

Here’s 25 stim questions if you’d like to do this yourself!

(From Ashton Daniel’s list on this video (go check it out!): https://www.youtube.com/watch?v=gHlos9VtM0o)

Why do you stim?

To calm myself, and to concentrate.

When did you realize what stimming is/why you do it?

I learned the term about a year ago, but I recognized it as the stuff I did as a kid that I then hid as I grew up. I now try to let myself do it more often.

Have you ever made a stim toy? What’s your favorite to make?

Not exactly. I like certain colors and fuzzy things and I make rugs and paint with the colors. Like a visual/texture thing.

What’s your go to stim for...

Being happy and/or excited?

Hands shake, fists closed usually cause I get embarrassed. Sometimes I bounce around, rock on my heels. Rolling my fists after one another really fast.

Anxiety or stress?

Big Leg bounce, Rocking. Shaking hands out.

Upset?

Claw hands, big sweeping motions with my arms.

Overwhelmed?

Same as anxiety. Sometimes I just don’t move at all.

Sensory-seeking?

Hand circles, wrist popping. Also flicking fingertips. I shrug and wiggle my shoulders a lot.

Any other strong emotions/feelings that make you stim?

Deep thought makes me put my hands to my mouth, applying pressure to my lower half of my face. Also with fuzzy things.

When I’m reading or attempting to focus intensely I subconsciously tap my fingers in patterns on the book surface or whatever is in front of me that makes sound.

When I listen to music by myself, I like to do an infinity symbol with my head as I listen, also stim dance with my hands and arms.

What’s your favourite texture?

Really soft smooth things- like squishymallow stuffed animals. And water.

Do you stim with your mouth at all? Do you have a chew toy or do you use something else?

I bite the insides of my cheeks constantly, but I haven’t got quite used to using a chew stim toy in public yet. I also put pressure on my face almost constantly. It is calming.

Do you use a weighted blanket, vest, plush, etc?

I have a small space themed lap blanket. I like it a lot.

What’s your favourite stim toy you have?

My favorite color Tangle. I take it everywhere.

Is there something on your stim toy wish list?

There’s a surfboard chewlery necklace I’d like to take with me on my upcoming trip.

Do you remember the first stim toy you had/have?

My tangle.

What’s your favourite body stim?

Stim dance! Probably why I enjoy conducting. Too bad no one sees me stim dancing.

Favourite visual stim?

Leaves on treetops, sky, water ripples, favorite colors. I could stare at them for hours.

Do you have pets you like stimming with? (Petting them, cat’s purrs, etc)

Not really. Maybe if my cat liked to be pet more.

Do you have echolalia and do you use it to stim at all?

YEA I quote things and make sounds all the time! Currently, the phrase “the reason I’m in here, is cause of that fake hedgehog!” from SA2. It’s on loop.

Do you watch stimmy videos and if so what’re your favorites?

Nah, not unless someone is uploading water stuff, but I don’t see that. I guess music might count. It needs to be a highly specific kind of visual stim for me to like it.

What’s something not made to be a stim toy, but you use it for stimming?

My mechanical keyboard lmao

Phone case

Game Controllers

Favourite simple stim toy, like rocks or buttons or fabric?

Metallic buttons or clasps, rough surfaces. Rugs.

Is there an everyday action you find stimmy, like skipping or brushing your hair?

Showers are simultaneously great and horrible sensory wise. I love the feeling of the water but hate everything else.

Are you more of a sensory seeker or avoider?

I’m not sure. I’m anxious a lot of the time, so I think most of my stims are focused on calming me rather then energizing.

What’s your go-to stim you do without thinking about?

Hands putting pressure on the lower half of my face, tapping fingers, wrist popping.

[khangowrites]

Is it a Complaint Essay or is the Workplace Unsuitable?

Ah, what am I writing today? Oh, well I suppose it’s almost 12am. Seems like a good a time as any. I wanted to just jot down a few re-occurring experiences I’ve had in the workplace and sometimes in other social spaces, and attempt to analyze them.

CW: mild mentions of abuse and bodily ailments.

A bit of forward: I tend to mask myself heavily whenever I am in any social situation; whether it be at work, at home, with friends or online (although I’m getting better at being myself on Discord at least. I owe a lot to my friends who accept me and whom I care so much about.) What this means is I often plan out what I’m needed to say in advance of a situation. I have an arsenal of about 5 minutes of small talk before I tank and several small greetings/placations I can cycle through on any given day if I’m not overloaded. I also limit my natural inclination to movement.

It’s called unprofessional/unsightly to sit with your legs folded under you, or to sway and shake your arms and legs back and forth in time to music in your head. But it’s okay if you tap your pencil. Everyone does that.

I have to wonder how noticeable my ‘masked’ self is. How real or fake it appears.

There have been a few trends I’ve seen with the way people treat me as an employee in the time I’ve been in the workforce. For clarity, I am a 23 year old 5’1” AFAB person with a face that looks like it stopped aging when I was 12. I’m non-binary, but I’ve seen that many have a hard time using a different pronoun for me because I look ‘so feminine’. I had one old man repeatedly tell me that my body was too pretty and that I shouldn’t hide it and ‘pretend’ to be something else. I was and still am quite unsettled and disgusted by that comment.

I haven’t used my full preferred pronouns at work simply based in fear of being fired or discriminated against further. Same thing at home- I haven’t told all my family out of fear. I may look back on this at some future date where I fully respect myself and I’m confident. I look forward to that day.

Oh, and I’m autistic.

Perhaps it is one of these things or all of them that cause people to treat me certain ways. I’d like to find out.

I worked outdoors at an Orchard for a season. They called me Cinderella because of the way I looked when I cleaned. They gave employees gloves and heaters. Only not me. When I asked, I was given a broken one and told to fix it. A coworker who had intellectual disabilities and poor eyesight was not offered a heater at all. I did not renew for the next season. Kim and I stayed in touch though.

I worked next at a gift shop at a historical site. I loved the history and the old buildings, but the cashier work was admittedly difficult. Most of the employees were kind, retired old ladies who treated me gently, like a child. Sometimes too much like a child. The assistant manager seemed wary of me, and she often avoided me. I don’t know why. I’m not good with eye contact, and I always fear that people will mistake my zoning out as being creepy or disrespectful; maybe it was that. She never brought her kids with her on days I worked.

The head manager was courteous, but always called me Special. We had an older man work in the last 2 years I was there who had a strong inclination to associate with the children at the shop, and in turn, me as well. He would always want a hug or pat me on the back, but ignored the other workers. I told the managers my uncomfortable feelings about him, but it went mostly unnoticed.

When it was found that I was decent with computers, I was tasked with entering jewelry into the system and creating labels with number associations. I enjoyed it, and they promised me a decent raise. My pay was raised a dollar several weeks later, and I found myself being tasked with more and more computer work, to the point of becoming an office manager myself, earning a grand total of 9 dollars an hour while my counterpart who started a year earlier owned a home on the same work.

I left that job after 4 years to be the music director at a local church. I love music and was excited. Maybe too excited. I developed acid re-flux and was hospitalized the week before my start day due to a panic attack. I realize now it was from stress. I also had an ovarian cyst removed a year later- it took up my entire pelvis and its formation was also attributed to stress. I’ve since been diagnosed with generalized anxiety, and I continue to have ever changing digestive issues, muscle problems and panic attacks.

After realizing I was autistic and also non-binary, so much of the stress of life started to make sense. The past few months I have been making life changes, and working towards finding a workplace that is accommodating and safe for me. My stress has lessened.

I worked at the church for 2 years. My last day is actually at the end of this month. As is the trend, I was not treated with respect when it came to my job. My pastor started choosing the hymns over me, and would make comments about me during services. His favorite was to say that my music made him fall asleep, and wait for laughter from the congregation. He had no musical knowledge, and forced me to play every song as fast as I possibly could. He didn’t believe I could do my job. Any attempts at mutual work failed to manifest. I unfortunately was groomed by a member of the hiring committee there as well, a type of abuse I didn’t even realize I had fallen into until several months after it was too late.

I currently work at a high school as a choir accompanist. I use she/they pronouns there, but no one uses they and I’m too worried to be fully they like I am outside of work. I am wary of soiling my relationship with the director further. She’s quite religious in the ‘gays don’t have rights’ way, so I have my fears.

The director is kind, but sees me as this innocent child that happens to have natural piano abilities, and the mutual respect that I’ve come to dream of just isn’t there again.

The director has the key to the doors and lets students in without fail, but conveniently forgets to let me in almost every day. At one time, I was in physical therapy and had a hard time standing and walking for any period of time. I almost went home because she didn’t answer any communication, class started 20 minutes previously, and it was 90 degrees outside and I needed to sit down because my legs were cramping. She plans the music weeks in advance, but doesn’t give them to me until the day the students get it, despite my repeated asking for time to prepare.

One day I was on zoom and she and the student teacher greeted me and then ignored my presence and played the piano herself for class. She struggled with the parts and commented to the choir that, “wow, Ms. Khango is actually pretty dang good at this- that little girl can play!”, but didn’t listen to me when I offered to play. I left the zoom after an hour.

The online students seemed to share my surprise at least, and I am grateful to them. They kept me grounded and reminded me that I matter and should have the same respect as everyone else in the room, zoom or not. They talk to me about not being heard and their chats not being read during class. It bothered me, too. The next week I brought it up to her in the form of making sure the zoom students were heard and she quickly dismissed it, like it was a puff of smoke. The students online now ask me questions directly and I relay them. It’s met with annoyance by the director.

They have voices too.

One of the scariest moments of my life was last week- I wore my ‘disability rights are human rights’ shirt to school. (Okay, maybe not scary to some, but it very much was for me.) After class, one of the students came to me and asked if I could help him find a way for his grandfather to get a seat at the concert, as he was disabled and he didn’t know how to proceed.

It filled me with joy to help him, and it filled me with rage when the teachers asked if his grandpa could just get out of the wheelchair instead.

My overall conclusion to all of these things is that people simply don’t understand, or don’t want to because it makes their lives harder.

Is discrimination and ignorance really easier than respecting people?

I’m not sure if this is all just one big complaint essay. I guess it is. What I needed to do was write it all out. All the things that make me uneasy or feel like lesser of a person. And I wanted to know why.

I note that at every job I am perceived as a child, or as someone naïve. I am not treated the same as another adult employee. I was ostracized for my way of moving and talking. Taken advantage of. My needs were not accommodated.

Even now, I feel guilt for writing this, like I’m just playing the victim for attention or something.

I want to be strong enough to stand up to it and ask to be treated with respect and have it follow through.

I want to unmask myself more and let myself move and talk naturally, and use my real pronouns.

My respect for myself and for others must become a powerful force.

My friends on discord- my real, genuine friends, have become monumental in my life. Most of my life I did not have true friends. Without them and their unconditional love and support, I would not be where I am right now. We are all equals. I want to embody that strong respect and bring it to others.

It’s getting late. 1 a.m. now. Well, I have tomorrow. Plenty of time for Star Trek.

[khangowrites]

About Communication

I suppose this is my first post/essay. I would like to write. I love to write anyway, but I’d like to write about something important this time. About communication. About autistic communication. Communication is an exchange of information. It can be through voice, symbols, sounds, or behavior. However, I have noted that verbal communication (as in speech) is often seen as ‘superior’ to other forms when in person. Why is that? Perhaps through an unspoken rule (lol)? Or, rather, by society as a whole?

I am autistic. I love being myself. I am mostly verbal, and I can effectively get my message across most of the time if it’s about a subject I particularly like. (Ask me anything about Star Trek TNG and I’ll talk for 5 hours straight.) I know other autistic folks who are not verbal at all, or who are selectively mute. I recently had been pondering the idea of using AAC every now and again. I too am selectively mute- usually in times of emotional/sensory overload or if a conversation is one that is complex (like politics or theories for example). In most cases, I want to be able to express my opinions and add my voice, but I can’t do it verbally.

But we don’t talk about that. By ‘we’ I mean my family and my co-workers, my friends; people. If I can be verbal, I should be verbal all the time. “Spit it out!” Or, “It must not be important if you can’t say it.” Or one my mother told me, “Stop trying to be so special”. This, to me, is like if someone speaks fluent English and barely passable Polish, is told to use Polish all the time and never use English. This is limiting, is it not? I attribute some of this mentality to functioning labels and the idea of normalcy.

I believe that functioning labels are limiting and allow stereotypes to persist over real people. If someone is perceived as ‘low-functioning’, they must be incapable of meaningful communication and thus not worth listening to and don’t need help to achieve said communication. Or, if someone is perceived as ‘high-functioning’, they are too “normal” to be considered disabled or in need of any extra help. This is a circle, and a terribly incorrect one that doesn’t allow for the complexity of real humans. Functioning labels compare every human to what is considered “normal”. This is damaging, and the word normal is vague and can be twisted to fit almost any narrative one might have. Normal does not exist. Humans are vastly diverse, each and every one of us.

I’m writing about this because of a specific incident between me and my parents. My parents love me, and I love them. Sometimes we hit bumps, and this was a big one (I’ll get to it in a minute).

My brother was diagnosed with Asperger's when he was 4 years old. I am now 23 and self-diagnosed. This is not unusual, considering I am AFAB (assigned female at birth), and at the time the diagnostic criteria for autism was entirely centered around behavior that was demonstrated through trials using only boys. I have been turned down at almost every center because autism is “for boys and children” and I was told by one place that I seemed too “high functioning” to warrant a diagnosis by a professional. Oh! There’s that word again.

Never mind that it took me 3 weeks to make that phone call, that I had a panic attack right before calling and I scripted everything I was going to say well in advance. I planned my entire day around that phone call. Had it been a text or email, it would have been better. Still anxiety inducing, but better.

I have great compassion for my general doctor- she helped me make some phone calls after seeing how distressing they were to me, and is just as baffled as I am that no place in Virginia will take me to even get assessed. This is a much larger issue that perhaps I will write about later. What I want to talk about is how my communication relates to a conversation I had with my parents. More precisely, an argument.

About a week and a half ago, I decided to download a text-to-speech app after watching a couple autistic creators on YouTube who used it for their videos. I was deeply curious and excited about the idea of using it to continue conversations when I no longer had the energy to speak with my voice. I sat in my room late one night, typing out paragraphs and paragraphs and being thrilled when listening to them back. Finally, my true voice- my writing voice- can be heard aloud! No 30 second pauses between words when my brain decides to forget how to speak, no rambling on and forgetting my sentences more than I do in my writing… It was a breath of fresh air.

And I am no stranger to hearing tts voices. I hear them on YouTube all the time in Reddit videos or on Twitch when donations are read out loud. For a number of years, I’d put books into tts just to listen to them aloud without having to pay for an audiobook.

So I decided to bring it up to my parents, considering that my father and I had a long conversation about government the night before but I couldn’t say what I wanted to say with my verbal words. I mentioned that I wanted to try out tts during times when I otherwise can’t speak. My proposal was met with immediate rejection.

“You can always speak.” “Well, if you can’t speak when you’re emotionally exhausted that’s not unusual, we all do that.” “I’m not going to listen to what that device says.” “It wouldn’t be you because we won’t hear the emotion in your voice.” “You are taking away our ability to communicate with you.” “I don’t mind you taking your time to speak.” I understand where they are coming from. They’ve known me my whole life, and think that I can verbalize just as well as them. But here is the thing.

You may not mind. I do. I mind because it takes immense energy to speak if it’s not about a special interest. I will be exhausted at the end of every day, burnt out every week. I mind because I have the tools right in front of me to accurately articulate my thoughts to you, but that’s not acceptable to you. I am not “me” to you if I don’t use my words verbally.

It says those kinds of voices don’t matter. And you may have just said it to me without that intention, but you’ve said it to all of us because you said it to me. To do as you say and never use tts or writing puts me in a weaker position. My good friend Jojo reminded me that day of how important boundaries are. Who is going to respect my boundaries if I can’t respect myself and take care of my own needs? No-one.

Later that evening, my father texted me to tell me dinner was ready. I was still upset and I did not answer right away (after all, my parents had just told me that writing doesn’t matter and I was angry).

A few moments later I heard him speak to my mother downstairs, exasperated. “None of our children have responded to my text.” My text. He didn’t see the Catch-22; the paradox- but my brother and I did.

I plan to use tts when my words fail me. Or writing. Or text. It eases my stress and gives me freedom. They are all valid forms of communication and I hope they become more heard.

[khangowrites]

Small Intro!

Hello, my name is Khango! Welcome to my writing blog. I'm a 23 year old non-binary autistic person (they/them, if you would) who adores Star Trek TNG, making rugs, and too many other things to write in this short blurb! I write about my experiences with autism and anything else that I feel is worth talking about.

You can catch my silly Star Trek captions at my other blog: https://imboldygoingtohell.tumblr.com