#30daysofautismacceptance2022

[turnleftaticela]

April 19th: How do you feel about self diagnosis?

Straight-up it is more valid than professional diagnosis

That’s not to say if you are professionally diagnosed it’s not trustworthy; positive professional diagnosis (i.e. you’re evaluated and they tell you you do have autism) is like pretty much never wrong from what I’ve seen

But

Negative professional diagnosis (i.e. you’re evaluated and they tell you you don’t have autism) is EXTREMELY extremely likely to be incorrect

If you’ve brought yourself all that way and they tell you you don’t have it

More than likely they’re just fucking wrong

Trust yourself before you trust a professional

I’m not even gonna say “do your research” because I guarantee an autistic person will do enough research to be accurately informed before they make any certain claims

That’s just how we fucking work

Oftentimes it doesn’t even feel like research so it can turn into impostor syndrome because we don’t feel like we’ve put enough effort into it when really we just naturally fucking research things without giving it much of a second thought

We constantly scan the world around us and collect data from it and our beliefs are infinitely more likely to be fact-based than, idk what the alternative even is, bias-based? Judgment-based? I don’t wanna say feeling-based but I guess it would kind of apply

But my point is

I didn’t suspect I was autistic because I wanted to be special or have a label or whatever the fuck the reasons would be to suspect you’re autistic other than you actually are; genuinely I can’t think of any. Cannot begin to conceptualize it

I suspected I was autistic because I spent the entirety of my teen years observing and analyzing the people around me, making note of their traits and behaviors and idiosyncrasies and communication methods and fashion choices and manners of speech and bodily movements and backgrounds and histories and commonalities and relationships and diagnoses and all the rest of it.

I catalogued all of this information in the “human understanding” section of my brain.

I made the scientifically obvious connections between certain characteristics and the way they were treated by their peers, teachers, family, friends, etc., and the classes they took and the grades that they got and their strengths and their struggles and their reputations and their needs.

And I analyzed my own traits and behaviors and experiences in the same manner, and I noticed many of the same patterns repeating within myself. And, scientifically, I came to the conclusion there was something about us that was similar.

This didn’t feel like research at the time. It just felt like life. That was just how I experienced the world. It still is. I don’t know anything different.

And so, when I eventually came across the autism label, I really did not need to do much extra research to see that it was exactly descriptive of the experiences I’d scientifically studied and drawn conclusions about. I was already a fucking expert; articles and papers and all the rest of it were far more confirmation and validation than explanation.

This experience is not uncommon. We’re told we don’t do enough research and we can’t know more than a professional, yet for all intents and purposes, we ARE the professionals. People don’t see the amount of work and research and analysis and fucking agony and effort and scientific method application that we pour into it, because they don’t fucking know how our brains work.

I can remember learning about the scientific method itself for the first time in school, and looking back it was the same feeling: “ohhh, so there’s a name for that!” and not … I don’t even fucking know what the alternative would be actually. My brain doesn’t really speak words when it has to wrap itself around a new concept. It doesn’t have the energy for that. But let me tell you, putting labels to the steps of the scientific method did not take a whole lot of fucking energy.

I’m not saying any of this to brag. It doesn’t feel like a special skill or talent to me. It’s just… life. It’s the only thing I know. It’s the only way I function.

So if you’re autistic, and you’re self-diagnosed, and you’re pretty damn sure about it in your heart of hearts but the doubt society is laced with is getting to you, stop. Don’t let it. Trust yourself. The world doesn’t understand us and it leads to gaslighting on a global scale. It’s nobody’s fault. But it’s just the truth. We’re trained not to believe ourselves. We’re trained to doubt our perceptions and discount our experiences.

Stop.

Don’t.

Don’t let them get to you.

Trust yourself.

You know yourself better than any allistic ever fucking will. Don’t let them tell you otherwise. Even if they have a PhD in autism studies and have talked to every autistic person in the world. Even if they seem to get it, they will never have lived it.

And it’s great if they do get it! They are capable of believing us! They are capable of getting on roundabout the same page! But even then, they can still miss the mark sometimes. They simply just don’t have the experience to draw from that we do.

So if any of them, no matter how much they seem to “get it,” ever tries to tell you anything that makes you start doubting your own life and self, stop. Don’t let them. Trust yourself.

They can never know you better than you know yourself.

[chronically-autistic-dinosaur]

April 7th: Is there anything in particular that you'd like to see more of in autistic representation? Anything you'd like to see less of?

In terms of autistic representation in media, I’d like to see more autistic females and POC. There also needs to be more adults represented. I’d also like to see more autistics with little support needs. Not all autistic people need a caregiver or live in their parents’ basements. Let’s also see more non-genius autistic representation. Just a regular run of the mill autistic person.

I would like to see less of the stereotypical autistic representation: white male (usually a child) with high support needs and has some sort of savant syndrome.

[turnleftaticela]

April 20th: What are your thoughts on terminology? (ie, high functioning and low functioning vs high support needs and low support needs, nonspeaking vs nonverbal, person first vs identity first, etc)

Utter bullshit

An autistic person is an autistic person

My least favorite one is “low intelligence” because it’s just not fucking true

Any “low intelligence” autistic person I’ve met has been a million times smarter than any allistic person I’ve met and I’m not just saying that to be corny I genuinely fucking believe it

I would be considered “high intelligence” by these definitions and yet the times I feel most intelligent are when I’m experiencing the world in the same ways that “low intelligence” people I’ve known have expressed that they do

To me the “spectrum” of autism is only a spectrum of masking

That’s it

How much are you able to mask and mold yourself into fitting this world

I’m not fucking kidding when I say any “low intelligence” or “high support needs” people I’ve met are what I would be like if I wasn’t trying to change and adapt and translate myself

If I could just be me as I naturally am

That is what I would be

There’s no such fucking thing as intelligence there is only OH PERFECT THERE

THERE

FUCKING THERE

“LOW MASKING” AND “HIGH MASKING”

THAT’S THE TERMINOLOGY I’LL USE

FUCKING THERE

If “low intelligence” or “high support needs” people find it useful and/or empowering to use that language I get it

It’s nigh impossible to convey what our experience is like to allistic people and I highly doubt that there will be widespread understanding of it in any of our lifetimes

They’re always just gonna see an allistic person with deficits

Maybe even an allistic person with deficits and talents

But they will never understand how we perceive the world and how much more fucking rich and complex our experiences are than we’ll ever be able to communicate

So if you need to tell someone something like “Listen to me I am fucking stupid I am less capable than you I will never meet your expectations no matter how hard I try I am genuinely just not good enough” in order for them to allow you not to hurt yourself

I totally fucking get it

But I just hope you know that you’re infinitely smarter than they’ll ever be

Genuinely

Not in a corny way or like “oh they’re so wise they only care about the simple things in life I wish I was like that!”

No

Genuinely

You see shit that is more complex than they will ever fucking understand

I’m telling you once they invent Doctor-Who-forehead-bump-style telepathic communication autistic people are going to change the fucking world

As for autistic person vs person with autism I really don’t fucking care

Words are meaningless they’re little more than a tool to manipulate allistics into giving a shit about us since they won’t take us seriously any other way

I think autism/autistic is kind of shitty terminology to begin with and I think we should invent new ways of talking about it to better convey our experiences

Autism should not be a noun it is not an object

Autistic is better especially because there’s allistic as an equivalent

But I think the terms should say more about what the experience actually means

Allistic’s etymology derives from nothing but “not autistic”

Zero specificity to what it means for them and thus zero specificity to what it means about our differences

I think we should work on summing up how we each experience the world and finding a term to represent that

Even if it’s scientific like the brain differences or something

White matter connectivity vs white matter separation or something

SOMETHING to express concisely what it ACTUALLY means to be autistic

Because for all the research they’ve done, still nobody on this earth seems to fucking know

Also nonverbal misses the point too

Like out of any of the terms listed here it’s probably the most accurate

But it’s still not enough

It’s more like

GOT IT “high translating” vs “low/non translating”

There we fucking gooooooo aaaaa aqkwgqisgqqisjqiqhsiqiwjsnshyqqijsqgqujdjfnff

This shit is so common sense and so fucking easy if only people could just understand what the fuck was actually going on in our lives

Aaaaaaaaa akqqgsiqgwidgqoswgqoxhqosgqqoxhqosyaqiwvziqvazohqoxbqizbqizbqisnqiwnziqiqjwnsfg

Personally I would consider myself semi- to high-translating on a good day

Never ever 100% ever

And I am very very easily dysregulated into a low- or even non-translating state

How the fuck am I supposed to have the energy for translating in a state where my literal entire experience of the world is incorrect and painful

Anqvqgqgqqfqgwksjqdqhh do skacqfqjsbacfqqkavxqdqhqcqdqcvqvbbqqgqqcqbqbqbqnqqq

So yeah words aren’t real and we need to come up with better ones that are defined by our own experience and not just allistic people fucking guessing

.

Oh and if it wasn’t already understood, “high/low functioning” is the worst one of all and needs to be eradicated because it’s literally just fucking eugenics

[chronically-autistic-dinosaur]

April 30th: Do you like to plan ahead for things or do you like to just "go with the flow" and see what happens? A mix of both? Does it vary by day to day?

A lot of the time it really does depend on the thing or the day. I do like to know ahead of time what plans are though, so I can plan my day around that. Even knowing the day before is enough time for me. There are times though where plans are made on the fly (going to the mall or to my aunt’s house) and I’m also fine with that. They’re not things that will cause me great distress if planning/preparation isn’t done.

If I am doing something new or going somewhere for the first time, I like to have a few days-a week of prep/planning just to make sure I’m comfortable with the situation. This can include looking at maps online for directions or even checking out the location ahead of time (if possible).

[chronically-autistic-dinosaur]

April 29th: What sort of things do you like to do to relax/for self care?

* Bubble baths

* Building puzzles

* Coloring

* Playing video games

[chronically-autistic-dinosaur]

April 25th: Do you struggle with switching tasks or is it easy for you? Does it depend on the task/situation?

I don’t necessarily struggle with the actual switching of tasks…more the returning back to the original task I was doing. I can easily go from one new task to another, but if I have to go back to a task I was previously doing, I struggle. Sometimes I can’t remember where I was in that task and I’ll end up redoing something over again when I didn’t want to/wasn’t supposed to.

At work, I everyone jumps around from task to task and I don’t like it. I would rather do one thing at a time (which is what I usually do) and my day goes much smoother. My managers don’t like it, and there are times I HAVE to stop in the middle of a task and do something different and I have actually forgotten to do the original task I was doing.

[chronically-autistic-dinosaur]

April 21st: What do you think about euphemisms for disabilities such as special needs, differently abled, etc?

I don’t hate the term (special needs), but I don’t necessarily like the term either and I try not to use it. To me, it implies that the person is severely mentally and physically delayed, which isn’t always the case, in my opinion. The term just has a negative connotation. It just sounds demeaning.

Differently abled is slightly better than special needs. To me, it just sounds like the person has abilities that are different than other people 🤷🏻‍♀️ It doesn’t have such a negative connotation to it, at least.

In my opinion, I see nothing wrong with using the term disabled. That’s what I use and I know most disabled people will prefer I use the term too.

[turnleftaticela]

April 17th: Do you prefer fiction, nonfiction or a mix of both for entertainment?

I love fiction but it has to be realistic, and even then I kinda gotta have enough energy for it. Nonfiction I can take in at pretty constant intervals, often doesn’t even register as entertainment to me just feels like living my life

For example I can spend 12 straight hours reading interviews/articles/biographies/etc. about a band that I’m into, but it doesn’t feel like I sat down to goof off and take a break from real life. To me, this IS real life. This is what feels most purposeful to me out of anything I do in a day. This is what makes me feel like I’m actually living and not just killing time. (Yes that’s a Radiohead reference)

Tbh, I don’t do a whole lot of entertainment in my day. I guess casually talking to my friends (i.e. not serious discussions) is entertainment? That’s probably the most I do these days that feels like turning off the switch, so to speak.

Lmaoooo oh my god. That’s what happened with my Beatles class I’m taking, too. I had to let myself just view it as entertainment instead of something that would feel like I’m actually living my life. And that was fucking hard.

That’s also probably why I tend to not check up with my friends for long blocks, even when I’m comfortable with them and don’t feel that I have to mask too much while talking to them, sometimes I just can’t get myself to break from my “work.”

And it’s more than hyperfocus, I think. It’s certainly not NOT hyperfocus lmfao akqhwsj but it’s like, idk. I just know there’s a difference for me between “ooh this is interesting” hyperfocus and “I am living the meaning of life” hyperfocus. Anqbqqgbqhqbq

But yeah, wow lmfao. I hardly do anything for entertainment OH I guess scrolling through apps is entertainment lmfaooo. Or watching random YouTube videos that aren’t meaning-of-life-related. That’s all kinda right on the fence between fiction and nonfiction, isn’t it? Certainly checks out with the realistic fiction preference thing.

But yeah tbh when I’m hyperfixating on something I don’t need any entertainment akqvqwjqbwjsn I’d much rather live my life than just pass it by. Which is why I end up doing nothing but research & analysis on it for days at a time without speaking to any of my friends or watching any unrelated videos or barely even scrolling through tumblr akqfqqisjqfqisskqfqusjwgquu sqfqusiwgtquws

(If you can’t tell, that’s where I’ve been these past few days. Ajqvqwjqbqushqvquqjwbbsn)

[chronically-autistic-dinosaur]

April 20th: What are your thoughts on terminology?

Person first vs identity first: I prefer autistic person simply because it’s shorter and easier to say. Person with autism just sounds clunkier and not as professional, in my opinion. I’m not offended if someone uses person first while talking about me, though. Whether someone says “I have an autistic sister,” or “my daughter has autism,” it means the same thing. I’m still autistic.

Low vs high functioning: I don’t like functioning labels at all and don’t use them on my myself or other autistic individuals. Low functioning is demeaning and makes it seem like the person is incapable of doing anything-which is not true at all! Just because they might be non-verbal, doesn’t mean they aren’t capable of following written instructions to do something. High functioning takes away from the fact that the person has to mask more to appear more NT. It also takes away from any struggles that the person may have. I prefer the terms low and high support needs instead.

[chronically-autistic-dinosaur]

April 19th: How do you feel about self diagnosis?

I support self diagnosis 100% Not everyone is able to get a formal diagnosis-especially women, POC and those who can’t afford one. Not to mention, autism is quite often misdiagnosed in minority groups because the diagnostic criteria is so outdated and based on “white and male children.”

[chronically-autistic-dinosaur]

April 18th: Do you have any pets? If not, do you want any in the future? Why or why not?

I used to have two cats (RIP Thor and Sahara). As much as I adored them and loved them, I realized that living alone AND having pets is lot of work for me. I had no issues remembering to feed them, but I neglected changing the litter box and it would get so out of hand. I just lack the executive functioning skills to properly look after an animal.

[chronically-autistic-dinosaur]

April 16th: Talk about discovering yourself as an autistic person. When did you first find out you were autistic? If you were diagnosed, what was that process like? If you are self diagnosed, when did you first start to suspect that you could be autistic?

Back when I was 12, I was part of some two-day clinical trial where I was tested for a whole bunch of behavioural and neurological disorders. I had my hearing tested. I had my vision tested. I had x-rays and blood tests done. I had a general physical exam done. I don’t recall MRIS or CT scans being done. I did IQ tests, a whole bunch of other standardized tests (including the ones for autism) and I had to talk with a psychologist. My parents also had to talk to the psychologist as well. At the end of the second day, my parents and doctor/psychologist went into the discussion room to go over everything. I wasn’t allowed in the room so I have no idea (and still don’t to this day) what all was discussed. This would have been when I was formally diagnosed with autism. My parents just never told me.

Fast forward to a few years ago. I started having suspicions that I was autistic. I knew what autism was and I knew what some of the traits/characteristic were and I felt I had those same traits. Strict adherence to routine and being upset when it got changed…sensory issues (that I was able to date back to my early childhood)…not wanting to be touched/hugged…my social communication skills that hadn’t improved as I got older. These things were just the beginning.

Then The Good Doctor came out and EVERYTHING changed for me. When I saw how much I identified with Shaun, I knew I had to do more research. His character was everything I was experiencing. So I did the tests (and scored high for Aspergers). I read even more on autism and found out that it described me. I went back into my childhood and saw that all the signs were there and were missed by both my parents and teachers.

When I told my mom that I had my suspicions that I was autistic, she then told me that she knew since I was a child that I had “odd and off behaviour” but didn’t know what it was at that time. She then confirmed that I was given a diagnosis at 12, but because autism wasn’t talked about much or as understood as much then as it is now, it was just left as it was and I was never told about it at the time.

So in a way, I self-diagnosed before being told I was formally diagnosed as a kid.

[chronically-autistic-dinosaur]

April 15th: Media is something that has the power to speak to a lot of different people in different ways. What are some media (movies, tv shows, books, etc) that really speaks to you as an autistic person? Something that you can really relate to?

The only thing that comes to mind right now is The Good Doctor. I relate to/identify so much with Shaun. So much so, that it was a huge part of my diagnosis story.

[chronically-autistic-dinosaur]

April 14th: Talk about connections, platonic and/or romantic. Who are some of the most important people in your life?

Being autistic has definitely effected my relationships. I’m 33 and I’ve never had a boyfriend or even been in a sexual relationship. I think a lot of it has to do with me not even knowing what love is and how to express it. I have a very difficult time with affection. I don’t like being showered with it and I don’t show affection….which is a turn off to a majority of people. I’ve had crushes (I honestly think it was just puppy love and I was an adult) on guys, but because I’m socially awkward and have general social anxiety, I never took the next step to ask these guys out. They would have been pretty boring relationships anyways because of the above mentioned issues. I also have a difficult time reading body language and facial cues , so I would have a hard time knowing what my partner was thinking or feeling unless they explicitly stated it. I also discovered I was asexual a few years ago, so that plays a huge role in my relationships as well.

I’ve been in a platonic relationship/friendship with a coworker and that ended badly. It could have been worse had my other coworkers not stepped in an alerted me of the situation. Being autistic, I didn’t see the dangers of this relationship. I thought he just wanted to be friends, but he apparently wanted more and I missed the warning signs. He never flat out said he wanted more. It was all in subtle hints and cues that my coworkers picked up, and I didn’t. I was taken advantage of because being autistic makes me naive and he saw my vulnerability and preyed on that.

Relationships will always be difficult for me because I’m autistic. I can’t read body language. I’m socially awkward. I don’t know how to show affection or be affectionate. I don’t know what love is. I don’t like physical touch.

The most important people in my life are my family, really. I don’t have people I’d consider friends, so my sister is the closest thing to a BFF that l have-I can tell her anything and know it’s in confidence.

[chronically-autistic-dinosaur]

April 12th: Do you consider yourself to be an organized person or disorganized? In what ways? Does being autistic affect how organized you are?

I’m a VERY organized person. Messes and disorganization make me anxious. I have all my LEGO sorted by color and shape/size. My bin is just full of baggies of LEGO. There’s no way I’d be able to have all my LEGO just thrown in a bin without some kind of organization. My books are organized by author…video games by system…hoodies by color.

My bed is made every morning and every time I use it throughout the day. Again, disorganized blankets cause unneeded anxiety.

I live alone and I have no clutter anywhere. My counters are clear, my table in the living room is organized in a specific manner and is clean. I know where everything is my house because everything goes back in the same spot it came from. It just has to.

I definitely think being autistic affects how organized I am. Clutter equal chaos and chaos equals stress/anxiety which equals meltdowns. To prevent meltdowns, everything in my life has to be organized/in order.

[turnleftaticela]

April 11th: Would you consider yourself to be a creative person? What kind of things do you create? Does being autistic influence how creative of a person you are?

Ohhhhh yes!!

Related to the connect-the-dots thing I was just talking about, articulating myself can be really hard. I find that some of the more significant difficulties I experience in my life are borderline impossible for me to convey conversationally. But, I find I can express them perfectly well in art, especially through songwriting. My lyrics say more about me than I could ever say in just normal words.

And it’s the same for listening to music; I relate to people way better when like

Actually let me just grab something I wrote (not lyrics) the other day to explain

Basically, art is a good tool for undoing self-gaslighting. The tangibility thing happens with my own creations, too; it’s so much easier to deal with an issue when I can put it into a tangible format.

And I think my art is really telling about my autism, too. For example, here’s a lyric I wrote in 2020, before I knew I was autistic:

In the words of one of my friends, it’s pretty much just Sensory Issues: The Song ahafqfwhwbqgwbd

Honestly, I don’t think I’ve ever written a song that wasn’t about autism in some way. I gueeeess you could make the case that the instrumental pieces I wrote in elementary school about Wuhu Island weren’t about autism, but the damn island was my special interest, so akabqfqysjsgqfwudng

But ever since I started writing songs in words, every single one of ’em has been about some kind of autism-influenced struggle I’ve had. And I had no idea at the time for most of them, but now when I look back, it’s so glaringly obvious. It’s really such an integral part of me and one that I’ve had so much trouble expressing and understanding, and I think music has been really the only way I could process any of it. And even though I have more of a vocabulary to describe my experiences now, I still think the music I’m writing says it all far better than I alone ever could.