#sl99 talks

[spectrumlife99]

Autistic people of Tumblr...what are your special interests?

Personally, my main special interests right now are Pokémon and PAW Patrol. And on the non-fiction, non-media side of things, I'm really into all the different Zodiacs of the world for some reason I don't know...I just like it. That one is definitely my most random manifestation of a special interest in my life since I have no idea where it even came from. 😅

Anyway, what are YOUR special interests? Feel free to share in the comments below!

[spectrumlife99]

A more personal story about a big struggle of mine...food.

I've talked a little bit about how I hate food before on this blog...but now I think it's time to go in-depth about it...even though I usually HATE talking about it, and I'm really nervous and anxious about making this post, but I'll do my best.

Ever since I was little (like, two years old when I was taken off the baby bottle and had to move to solid foods, which, actually, I have NEVER drank milk since the baby bottle was taken away because it was nasty and I no longer needed it to survive...and I STILL to this day hate milk and find it gross), I have had MAJOR sensory issues with food, causing me to be extremely picky and particular about what I eat. I have issues with the look, smell, taste, texture, etc. I also hate things on my plate touching each other, and as a kid I had to have everything on separate plates/bowls because I wouldn't eat if anything on the plate touched each other. I still hate that to this day though, with a lot of work, I have been able to move past the "everything on separate plates/bowls" thing. I do still try my absolute best to keep everything a good distance from each other though.

I am also very particular about even the same types of food. For example, I only eat certain specific brands of certain specific things, and if the brand is wrong, even if the food itself is the same, I will always notice just by smell alone, and refuse to eat it. If the brand is not the safe brand, I will not eat it. If we don't have a safe food or the right brand of safe food, I will choose to go hungry rather than eat, because it's just too much for me to eat a non-safe food/brand. My diet is extremely limited...I would say that 99% of all foods in this world are way too overwhelming for me, and I know for a fact that I can count the number of foods I will actually eat on my fingers...and everything on that list is bland, except for a couple VERY SPECIFIC flavors of VERY SPECIFIC kinds of candy. It has to be bland because I can't handle anything that's spicy (even if it's only a tiny kick or a pinch of seasoning, it will still feel like my mouth is burning and my stomach will start feeling bad), I can't handle bitter things (bitter things will immediately trigger the gag reflex), and I can't handle sour things (sour things, aside from being overwhelming in taste, make my mouth really irritated and that really hurts), or things that are too sweet (I can handle mild sweetness but if it's anything even the slightest bit over mildly sweet, I can't handle it, it triggers the gag reflex). If I could survive without eating, I would never ever eat a thing because I hate food and eating so much. I usually only eat one meal a day, that being supper, because my family always makes sure to have safe food for me in the house for supper specifically. And if we have takeout or go to a restaurant, we always make sure that the restaurant has one of my safe foods beforehand, otherwise I won't eat.

I have gone multiple days in a row without eating anything, because there was nothing safe around. This was back when I was in my early teens in the psych hospital. I was there because I needed a medication adjustment, they had to take me off everything and put me back on everything again slowly, as well as change some of the meds because I was struggling with severe anger issues and aggression, there wasn't a day that went by without me exploding on someone and physically hurting them or myself back then...so I was in the psych hospital for about a week and a half. The teen ward was like a dorm at a university or something, there was a common area, and two long corridors of rooms, with the girls on one and boys on the other. Now, the food situation there was...less than ideal... especially for someone like me. We had a choice of what we wanted to eat, but to actually GET to choose, we had to wake up at the designated wake-up call time...which was always really hard for me since I am not a morning person and I also had nightmares that woke me up and made me really anxious and panicky basically every night. So, as you can probably guess, I always missed the menu choices, meaning I always ended up with something random. That was not good, because it was almost always something that wasn't a safe food. The worst part of it was, there were multiple days in a row of this, and by the fourth day in a row of me not eating, one of the nurses did the worst thing possible for a person with severe food sensitivities...the nurse force-fed me...and continued to do so everyday after that. It was like torture, and every time after being force-fed by the nurse, I would go right back to my room, head right to the bathroom, and proceed to get rid of it by gagging myself on purpose to make myself throw up. The food sitting in my stomach made me nauseous as it was already so I just had to get it out of there so I could feel better. I never told anyone about it though because during my entire week and a half there it was so traumatic I was basically rendered mute, barely saying a word to anyone. I know that they were just worried about me and wanted to make sure I survived while I was there, but they definitely could've done it less...aggressively...

This wasn't the first time I was force-fed either. As a kid, with my OT, I did a type of feeding therapy called Feeding Team. It was supposed to help me learn to try new foods...but it didn't work. Now, the person who force-fed me there wasn't my usual therapist. My usual therapist never did that, she just sat there with me and reminded me that if I didn't eat the food of the week, I wouldn't be allowed to do all the other stuff...the stuff I liked doing in OT. Multiple weeks just consisted of me just sitting there the whole time because I just wouldn't...COULDN'T eat. But my usual therapist never threatened to force-feed me or anything like that. So how was I force-fed there, then...? Well...it was when my usual therapist wasn't there, and I had a substitute...a couple substitutes weren't the most patient and after it became clear I wasn't going to eat, they would pick up the fork or spoon, gather some of the food on it, and shove it into my mouth. I would immediately go running to the bathroom after that and proceed to, once again, get rid of it all so I didn't feel sick anymore with the food sitting in my stomach like that.

No one, absolutely NO ONE in my family knows that I've been force-fed before. They also don't know about me purposely getting rid of the food I was force-fed every time. I have only told my talk therapist and a best friend of mine who understands what having food sensitivities like this is like...and only brought it up in the first place because I've been thinking about this for a while and having nightmares about the force-feeding where I wake up feeling sick and like I need to get rid of the food I was force-fed in my dream...so it's been really bothering me a lot lately. And I'm one of those people who HATES anything to do with throwing up. If someone around me is sick with a stomach bug or flu and I hear or see it...I freak out and have full-on panic attacks over it, and when I have the stomach bug or flu myself, I try to keep everything from coming out as long as I possibly can.

And food unfortunately is something that can make me really sick and trigger the gag reflex from just the look and smell alone...which is why I always stay away from the kitchen when my family is eating their meals, and waiting until everything they had is all cleaned up and put away before I can finally have my own safe food for supper...I do this pretty much everyday, as it's very VERY rare for my family to have something I can eat alongside them for supper. The only thing that really comes to my mind that I eat with them is pasta...my mom makes it plain and makes the sauce separately because she's allergic to tomatoes and I don't like sauce. I completely cover my plain pasta in the (what I like to call) "cheese salt" type of parmesan cheese because that way it tastes better and it's not greasy. One of my younger brothers (who also has some food sensitivities, but he's not nearly as problematic in my parents' eyes as I am because he eats a lot more things than I do) does the same thing, and we often fight over the parmesan cheese because of it.

I used to have to sit at the table with everyone during holiday meals, which felt like torture, but now I don't have to do that anymore because I just can't do that without feeling sick and losing my appetite at the sight and smell of all holiday food. The only thing I eat on holidays is plain rolls...which is just bread. Everything else is way too much for me. So I wait for everyone to finish and clean up, and then I have a safe food, just like basically every other day.

On Easter yesterday I didn't even eat supper at all because I just wasn't hungry. I have a hard time noticing when I'm hungry or not, so that plays another part in me not wanting to eat, because I don't feel like I need to. I've been put on an appetite stimulator medication because my one meal a day is not enough for my family and support workers and it makes them worry...even though I'm totally fine with one a day but that's just me. It worked for a while, it didn't change anything I actually ATE but it made me feel hunger a bit more...though now it's stopped working and I'm back to one meal a day. I get really tired of my family constantly judging me for being picky, berating me for never eating anything, telling me I'm being difficult, and saying things like, "There are people starving out there, you should be grateful for what you have and eat!" When they say those things, it does not help at all! It instead just makes me really upset because I literally CANNOT HELP IT! I didn't ASK for this, I didn't ASK to have so many food sensitivities...and it drives ME just as crazy as it drives THEM! I wish I could eat more things so they wouldn't get so mad at me all the time but I just CAN'T!

You know how people will expect you to just toughen up and eat what's in front of you...? Yeah...no...that doesn't work for me. If there's nothing I can eat, nothing that's safe, I will not eat a THING until I have a safe food in front of me again, even if it takes multiple days...the longest I've gone without eating was four days. I am so glad my parents don't force-feed me though, like the nurses at the psych hospital or the substitute OT person did...because that means I haven't had to intentionally make myself sick to get rid of the things I was force-fed in about a decade now. I am so afraid to tell my family about those incidents because they have never heard anything about it from anyone at all and I always keep traumatic memories and things that happened to me to myself for years at a time, until I can't take it anymore and I just break from the stress, but I am working on it now with my talk therapist, so I hope I'll be able to say something eventually.

Anyway, I guess what I want to say is, anyone else who's autistic and struggles with food sensitivities, I see you and I feel you. You are not alone. I used to think I was alone in this until I met my best friend who struggles with this stuff too. It was so validating for me to finally have someone who understands what this is like, and I hope my story can help some of you feel not so alone either.

[spectrumlife99]

I am not "high-functioning". I am not "low-functioning". I am autistic.

[spectrumlife99]

Christmas can be a LOT for autistic people...but I hope that all of you who celebrate it had a good one yesterday

I personally had a good one, though a family member I don't get along with came over so I was stuck in my room for the whole afternoon, but I was able to keep calm thanks to this mechanical emotional support cat I got from my grandma on Christmas Eve. I absolutely love that cat and she is so soothing for me to just sit there and pet and hear her meow and purr, and the purring is actually like a real cat because it vibrates and that's so soothing for me, it's like a vibrating weighted pillow and I love it. She's designed like a tuxedo cat and I named her Casey after the real tuxedo cat I had growing up, but the real Casey passed back in 2019 at the age of 20 (almost 21, which is LONG for a cat) and I never got over it, especially since I'm one of those people who finds being around cats to be soothing and it really helps with my anxiety. But I can't have a cat nowadays since my house is way too small so I'm so glad I was able to to get the mechanical one...and the fact that those are MADE for emotional support is perfect, they're made for seniors with Alzheimer's/dementia, and also for people with disabilities of any kind (autism included), that can't have a real pet, to have a 'pet' that helps with anxiety or depression or basically any kind of mental health issues. I gotta say, she is working wonders for me so far, everytime I have her on my lap petting her and making her purr, I feel ten times more relaxed than I have in a LONG time. Here's what these cats look like, doesn't it look fluffy?

And here's a picture of MY specific cat, Casey 🥺

So yeah, VERY fluffy, VERY cute, and perfect for my anxiety and depression...she was the perfect gift and I'm so glad I got her.

I know I haven't posted anything in a while, but I HAD to talk about my new emotional support cat (she's a real cat to me, okay?) and share the fact that these exist in case any of you might think you'd benefit from something similar (they are expensive though).

[spectrumlife99]

To all autistic people who have a "childish" special interest, or just happen to like something that is viewed as "childish" by everyone around you, I see you and feel you. Your interests are valid, there is nothing wrong with liking something geared towards children as an adult. Don't let people who tell you otherwise get you down, you should be free to like what you like, especially if it helps you through tough times.

Sincerely,

An autistic person in his 20s who still really likes Thomas the Tank Engine, and who would still really be into PAW Patrol if I hadn't developed a phobia of sirens

[spectrumlife99]

Had to get blood work early this morning, which is never pleasant because I HATE needles as well as being touched. There's one person at the place who is really good with me though, but...she wasn't there today...I panicked and even though I had my headphones and backpack of sensory/fidget toys, I still lost my ability to speak and wouldn't get up off the seat in the waiting room until my mom helped me into the testing room. My mom had to explain that I always get really nervous and have extreme sensory issues, which one of them is I hate being touched. Luckily the person doing the blood work this time was able to understand and used a much smaller needle so I wouldn't feel it as much. Of course, I did still feel it a lot but I managed to get through it, and afterward when I got home I got a Pokémon shirt as a reward! My mom said I did very well and that I should be proud of myself, and I am! I am also really grateful that my mom was there to help me get the support I needed when I couldn't speak. She's advocated for me since the very beginning and even though I'm learning to speak up nowadays, she still really helps a lot when I can't, like today.

[spectrumlife99]

Talking is SUCH A HASSLE...

I’ve gotta say, not talking much for the past two days has really been nice...talking drains me of energy and is often anxiety-inducing to the point where I just CAN’T get any words out and considering the fact that I’m FORCED to talk just because I can (seriously I’m forced to even say things that could easily be conveyed with simple gestures, like ‘yes’, ‘no’, and ‘I don’t know’), even though writing is a much easier and more effective way for me to communicate my thoughts and feelings in the first place, finally just being able to stay quiet for once has kept me calmer than I’ve been in a long time, especially since I’ve been going through a lot lately.  I’m one of those people who doesn’t like talking much, and I have episodes where I lose the ability to talk VERY often, usually if I’m tired, stressed, anxious, in meltdown or shutdown, etc.  I went through a phase in elementary school where I stopped talking altogether for a while because of bullies, even though I used to be KNOWN for being the ‘weird copycat kid of few words’ in the first place, and I have social anxiety so bad my words lock up when I’m in public by myself or whenever I’m on the phone with anyone else besides my grandma...I only have a select few people that I’m comfortable actually talking to, and they are my grandparents and my immediate family, I can actually talk to them without much of a hassle (ESPECIALLY if it’s about my special interest in Pokemon), except if I’m stressed, tired, or in meltdown or shutdown.  I’ve even become so distant from my friend group that I’m afraid to get back in touch with them even if I can somehow manage to resolve the conflict between us...which makes me freeze up just thinking about it.  I’ve completely isolated myself at this point and won’t say anything to any of my friends...because I just CAN’T without my words locking up which gets me nowhere.  I don’t know WHY talking is such a hassle, I don’t know WHY it’s so much easier to just write instead, I don’t know WHY I lose my ability to talk so often at seemingly such small things, I don’t know WHY I can only talk to my grandma on the phone but no one else, I don’t know WHY I freeze up in public when I’m by myself, I don’t know WHAT IN THE WORLD IS WRONG WITH ME AND MY STUPID VOICE THAT ALWAYS BETRAYS ME!!!  

....even though I don’t like talking and prefer writing instead, it still gets frustrating when I can’t get any words out...it’s like a double-edged sword...and a battle I can’t seem to ever win...

Anyone ever feel the same way...?  If so how do you deal with it...?  Because I’m seriously stressing over this right now...       

[spectrumlife99]

Quick PSA: “Basement dweller” is not okay!

Okay, so, around the internet, I see the term “basement dweller” thrown around a lot as a derogatory term for people who still live with their parents as an adult...and I don’t like it.  You don’t know exactly WHY someone still lives with their parents (unless they straight up tell you of course), and assuming that they’re a lazy manchild (which many people who use this term do) is not okay...some people actually CANNOT live on their own for various reasons, you know.  Many autistic people (including myself) can’t live on their own because of the disability, and when I see “basement dweller” thrown around at them, it makes my blood boil.  They can’t help it, they wouldn’t even be able to survive on their own...and they don’t deserve to be picked on for it!  

What I’m trying to say here is, you don’t know the situation and why they’re still with their parents, so PLEASE STOP ASSUMING THINGS!  It’s NOT okay and it can really be hurtful! 

[spectrumlife99]

Oh boy...tomorrow's Thanksgiving...that means I have to deal with being surrounded by foods I can't stand. I can't even BE AROUND holiday food, never mind eat it! The smells and looks of holiday food is just too overwhelming for me and I can't be in the same room with everyone while they're eating it. Luckily I don't have to sit at the table with everyone since my family knows about my issues with holiday food. I can count the number of foods I will eat on my fingers, and while it drives everyone crazy, I can't help it. I have issues with the way food looks, smells, tastes, and also texture. My family made sure I have something I'll actually eat tomorrow since I don't eat holiday food, so I'm relieved that I'll be having one of my safe foods for supper tomorrow. So I'll just be watching the Macy's Thanksgiving Day Parade on TV tomorrow waiting for the Pikachu and Eevee balloon (my favorite balloon, of course), steering clear of the kitchen as much as I can, and then eating a different, safe meal for supper separately from everyone else...at least we don't have anyone coming over or anything. That would be way too much for EVERYONE, not just me.

To any other autistic people who have food sensitivities, just know you're not alone. I see you and feel you, I'm the same way. It's hard not being able to eat many different foods because of sensory issues, and it's even more of a struggle being yelled at or scolded for it, even though it's not something you can just change. It's not like I can just flip a switch and all my problems with food are gone, no, I've had these issues since I was a kid, and they've only gotten worse over time. I'm to the point where I'm going entire days without eating anything, and I usually only eat one meal a day when I do eat. This stuff is usually really hard for me to talk about but I feel like it's kinda important, and since tomorrow's Thanksgiving, I figured now's as good a time as any to post about it.

So yeah, thanks for reading this kinda long post about how much I hate food, I guess...😅

And everyone in the US, have a happy Thanksgiving tomorrow!

[spectrumlife99]

I’m writing a book

Yep, that’s right, I’m writing a book about my experiences as an autistic person.  I actually started writing it last year and while I’ve still got a while to go before it’s done, I am definitely planning on publishing it.  I’m writing it to at least try and help people learn at least a little bit more about autism and what it can be like to live with it.  I believe the best way to learn about autism is from autistic people themselves, which is why I want to share my story with the world.  I can’t lie though, I’m really anxious about it, but I’m doing the best I can to write each chapter and focus on the goal of helping people learn more about autism.  I just wanted to share the fact that I’m writing a book, that’s really all I wanna say here.  

If anyone has any questions, please feel free to go to my ask page and ask them

[spectrumlife99]

Any other autistic people out there who also have, like, the strongest sense of smell that's humanly possible...? My family constantly compares me to a dog because I can track things by scent, I can detect scents that other humans can't, I aced a silly little blindfold challenge my school did once for an activity fun day (being able to identify different candy colors and flavors while blindfolded without even having to taste them like everyone else did, I just did it by smell), I can distinguish between multiple different scents in the air (like for some examples, at a restaurant I'm always smelling, like, hundreds of different things at once, which is really distressing, or if my family is cooking something I can smell every single ingredient in whatever they're making, also all the different smells in nature are overwhelming because I just pick it all up at once and can tell everything apart), everyone has a unique scent (for example, one of my old friends ALWAYS smelled like pickles, all day, everyday, and whenever I think about that person I smell that same pickle smell even though I haven't seen that person in years now, it's just ingrained into my brain at this point), I can detect things like gas leaks and burning from a long way away AND way before anyone else which has saved my mom from many an asthma attack because I'm able to pick up on it before anyone else and shut the door before it reaches her (there's a house in my neighborhood that's always burning things for some dumb reason), I can even tell what the weather will be just by smelling the air, etc, etc. It's overwhelming picking up on literally everything around me and it gets even worse when it comes to food...I'm not going into that here because I've already written a post about my food issues but my sense of smell being so strong plays a huge part in that. But I see it as more of a curse than anything, picking up on literally every scent around me is extremely overwhelming and exhausting...I don't get the people who have told me they wish they had a nose like mine, because I always tell them "No, no, you really don't. It's not a blessing, it's a curse that causes meltdowns and interrupts my ability to function in day to day life."

Any other autistic people out there who experience this type of extreme hypersensitivity to smell? I sometimes feel like I'm the only one because I've never met anyone else with this issue, at least not anyone with nearly as strong as my own sense of smell, so I'm genuinely curious.

[spectrumlife99]

Please, can anyone help me spread awareness of a specific autistic trait that I have but nobody seems to understand...?

I made a HUGE long post about my food sensitivities and even though my mom read the post, my parents don't truly understand my struggles because they are as neurotypical as you can get. I want to spread the word about how food sensitivities can severely impact the life of an autistic person, just as it does for me. Here is the link to my huge long post.

If you think you will be triggered by the post or it will make you upset or anxious, you don't have to read it...just please...PLEASE...if you are autistic, especially if you relate to this issue, please reblog this post right here that you're reading right now, and help spread the word. Also even if you are not autistic, I urge you to reblog this anyway, especially if you know an autistic person who struggles with this issue. Please help me with my mission to at least TRY and help people understand how much this issue affects not only myself but many other autistic people as well. I KNOW I am not the only one who struggles immensely with this. Please help me spread the word. The word needs to be spread.

[spectrumlife99]

I wish I had the ability to magically make my parents understand everything about my food sensitivities and how they affect me...but they're as neurotypical as you can get so they'll never understand...especially the ways I want them to understand. At least my mom read my post and said it was really well-written, detailed, and informative...so I hope she'll start trying to help especially when my dad keeps being his old-fashioned, gaslighting self by telling me that people are starving and that I'm being difficult by not toughening up and eating what's in front of me. That just upsets me and makes me feel like a terrible person and a failure of a human being for not being able to eat 99% of all foods in this world.

[spectrumlife99]

Meltdowns are the absolute worst thing ever, especially when I have them in public...I had an explosive meltdown last night and it was one of the worst ones I've had in a while. I hate it when I explode like that, and I always regret it afterwards, but I can't feel it coming on at all, it just happens. I've learned recently that I have severe alexithymia which plays a big part in not knowing how I'm feeling and not being able to sense that there's an incoming meltdown...

Does anyone else have alexithymia so bad that incoming meltdowns are impossible to sense??? Please tell me I'm not the only one who does...

[spectrumlife99]

That moment when you realize you've been hyperfocusing on a single thing for over 24 hours straight feels so weird and off...please tell me I'm not the only one who does this, because it happens to me quite often. I always feel so lost after I come out of it 'cause I have no idea what time it is or what day it is, and it's always someone else who brings me out of it, because I can't on my own. Hyperfocusing has positives to it though, for example, I can get things done quicker and easier when I hyperfocus. It also allows me to really zoom in on details, and it aids my creative skills, among other things. I honestly don't know where I'd be without my ability to hyperfocus and I've actually started calling myself the king of hyperfocusing. 😅

[spectrumlife99]

Why do people keep saying this?!?!?!

Okay, so I’ve seen and heard people say this a LOT throughout my life: “AuTiStIc PeOpLe HaVe No ImAgInAtIoN!  If YoU’rE cReAtIvE yOu CaN’t Be AuTiStIc!”  Seriously people?  I like to IMAGINE (ha, see what I did there?) that people who say autistic people have no imagination have only met one autistic person in their whole life and that one person had this struggle...because this couldn’t be farther from the truth.  While I am definitely aware that yes, some autistic people do indeed experience that, I myself and many others (that I personally know IRL) are extremely creative and imaginative.  In fact, if I didn’t have my creativity, I wouldn’t be able to express myself AT ALL!  It’s just like the saying goes: “If you’ve met one autistic person, you’ve met ONE autistic person.”  Everyone’s experiences with autism are completely different.  It’s a spectrum for a reason...sorry in advance if this sounds rude (because I am unable to identify my tone), I didn’t intend it to be, I’m just tired of hearing this stereotype all the time.