Tuesday, March 3, 2020

Autistic Adulting 101: Be a Practical Karen (January)


Image result for karen memes
(Disclaimer: This is a post about assertiveness and self-advocacy. Not about being an actual Karen.)

As an autistic who has always tried to give everyone the benefit of the doubt, something I learned is that you have to be thorough and persistent to get what you need. You can't always trust that someone (ESPECIALLY corporate peoples) is being honest and will follow through or keep promises.

An important lesson I learned from watching my dad negotiate over the phone + much trial and error + unfortunate consequences is to assume that everyone is incompetent. This isn’t a healthy view when applied to everything (especially regarding loved ones—I’d rather assume the best from them!), but it certainly helps prevent me from getting burned by insurance companies, medical offices, government agencies, and any organization looking to make money off me.

The “Huber” way according to my dad is to assume incompetence, be persistent, and negotiate to get what you need and want in life. You should never have a pay an unjustified bill or tolerate being scammed.


I certainly did not inherit this attitude… I had to learn it.

When you think a problem is resolved, because someone says "I'll take care of it," don't just leave it up to them and wait... Check on them, ask about it, remind them, be specific, etc. And whenever possible, do whatever you can to resolve an issue on your own since you can't trust random people who are only focused on profit.

I learned this from dealing with people lying to me about my insurance benefits, the quality of products I buy, and customer/tech support agents who don't actually read my questions in emails, and many other scenarios where I had to be assertive and communicate clearly.

So I've become a Karen. A really annoying Karen. But you gotta be a Karen to get what you need in this capitalist society that's got way too many people in it who don't have time or motivation to be helpful.

P.S.: A "Karen" is a stereotype of a person who is irritable, entitled and "wants to see your manager," but in the context of this post it is someone who is persistent and doesn't give up until she gets what she wants, even if others think she is trying too hard. I’ve just been conditioned to be super passive, so even “normal” assertiveness feels like I’m being an asshole. So I just embrace my own concept of being an “asshole” so I can have “normal” boundaries. :P

That being said, you can be a “Karen” without being a jerk. Just aim to be calm, factual, thorough, and persistent.


EXAMPLES OF ME BEING A PRACTICAL “KAREN”

Health Insurance + Doctors

Here is an example of how I learned to be calm, factual, thorough, and persistent:

When I first got my own health insurance (Medicaid/Medicare), I had no idea what I was doing. (It's worth noting that I am in the USA, so I'm navigating a mess of a healthcare system.)

I did realize that I needed to check if insurance covers procedures. But I started asking in the wrong place: my doctor's office.

I used to ask my doctor if a certain procedure would be covered by insurance. The doctor would say "Oh yes, it definitely is." But then I'd get a huge bill in the mail from the doctor’s office.

Image result for huge medical bill

How could they lie to me?? Well, the doctor probably didn't have the right information (they're not my insurance company) and just wanted to reassure me, or was in a rush to do their job and not focus on the details.

Since then, I learned that I had to call my insurance to check my benefits before getting any medical treatment. But even insurance agents would give the wrong info when I'd ask what is covered. Sometimes it's because I called a "general" phone line for an insurance company and not the phone line for my specific plan.

So from that point I'd call the phone line specifically for my plan. But sometimes, I’d get conflicting answers to my questions--one agent would give me "info A" and another agent would give me "info B"

So I learned that I have to ask more than one agent the same questions.

When that failed (like if I still got a bill), I started reading my insurance manuals. And I realized then that I needed to ask not only if certain procedures are covered, but if every step of anything medical-related is covered.... From transportation, to making an appointment, the doctor deciding to do a seemingly meaningless action or "test" that they don't tell me I could be charged for.

And since I had to find new doctors when I switched to Medicaid/Medicare, I realized that I check with my doctor and my insurance company to make sure that doctor was in my network (meaning: covered by my insurance).

So now my steps are to: 
1. Ask a doctor if they take my insurance
2. Ask my insurance if that doctor is in network
3. Read my insurance manual
4. Call my insurance
5. Ask several different agents the same questions.
6. Repeat the above steps until I've thoroughly annoyed everyone but got consistent answers and results.

Side Note: Something that I realized DOESN'T work for everything from the Huber Method™ is sob stories. People want cold hard facts. (especially for issues like health insurance). So if I get a bill in the mail and don't think I should pay it, I need to back up my reasons with evidence, like from my insurance manual, instead of simply saying "I'm disabled and poor etc." (though that can be useful in getting my needs met in some circumstances.)


Buying Stuff
(This section is written by Ayden cuz January got tired of writing.)

I learned that people also lie to you in order to sell you stuff. Surprise!

I have been in need of a new mattress for a while now due to back and neck pain. I’ve had the same old just-OK twin-size spring mattress for most of my life. So I shopped around, tried out different mattresses in search of the absolute softest one.

Image result for mattress
Mmm, sleep... something I'm lacking cuz I'm writing this stupid post

I settled on the softest one at my local Mattress Firm, but it turned out to not be all that soft—it took a few months of sleeping on it for me to figure that out. So I returned it and looked for a softer mattress.

My parents have the most luxurious mattress I’ve ever laid on. Super deep mushy top layer, but still supportive—exactly what I needed.

Note: I am a picky person. Idk if this is due to being autistic, but I need things to be just right, or I won't use them. So I gotta be Super Karen and go the extra mile to find precisely what I need and do whatever it takes to get it.

Since I liked my parents' mattress so much, I decided to find the exact same one, a Serta something-something.

Turns out that mattress doesn’t exist anymore. Serta discontinued it. So I called Serta (well, my dad did cuz I was struggling with phone calls at the time, and he’s a Level 100 Karen) with the model #, and they gave me an option that supposedly had the exact same foam layers as my parents’ bed, but even softer. I was totally game for that. So I bought it.

Almost two months later and I get off my lazy butt and decide to actually compare my new Serta mattress to my parents’ Serta mattress. And NOPE. It’s not the same at all. I DO have a mushy top layer, but it’s much more shallow, so my bed feels kinda firm in comparison to my parents’.

So I did some research on the specs of these beds and turns out that YEP, they have different layers.

So, I’ve just been lied to and screwed over. I’m gonna call Serta myself with the specs information and ask if they have a mattress that meets the EXACT specifications of my parents’ mattress, and to direct me to a link or something with proof of the specifications before I buy another bed.

There’s a chance that the Serta agent was genuinely ignorant about the differences between the mattresses, in that case I’d be more sympathetic. But it’s frustrating either way, to buy a big ticket item only to realize you got the wrong one.

Also! Don’t buy something just cuz someone says it's good. Bad idea. It’s never as good as they say.


Customer Support
(Alyssa wrote this section)

I’ve also had issues getting problems resolved via customer service or tech support.

Image result for customer support

For example, I just became a Twitch Affiliate (meaning I can make a few bucks from ads on my livestreams), and my viewers told me that no ads were showing up during my streams when I hit the “ad break” button.

It had been over a week since I was approved, so the ads should have been working! I decided to contact Customer Support to figure out what was going on.

My question was something like:
“I became a Twitch Affiliate over a week ago. When I hit the “ad break” button on my live streams, ads do not show up for my viewers. What is going on and how can I fix it?”
This was the reply from Twitch's Customer Support:
“We can understand how frustrating it is when ads play too much, or ignore our built in volume limits. Whenever this happens please make sure to use the “Options” gear on the video, and under “Report Playback Issue”, there are options for “Advertisement has played too many times” and “Advertisement cannot be muted or is too loud”.”
If you haven’t noticed yet, the customer support agent completely missed the mark, thinking I was reporting getting too many ads (likely as a viewer) when my issue was no ads at all (as a streamer/Affiliate).

I’m guessing this was either an automated reply or that the customer service agent was only copying/pasting a scripted answer because they either didn’t have an answer, or didn’t read my question in the first place.

I eventually figured it out on my own and the ads are finally working. I’m still having some other technical issues though, so I’m gonna be annoyingly persistent in contacting support until I get someone to actually read my questions and answer me, but I won't stop streaming because of it. Sometimes you just gotta make do until you get the answer or solution you need. Don't let the incompetence of a company or person stop you from living your life.

Trust me, I get it. I used to waste my time "waiting" for answers because I hate uncertainty, but all that did is cause me incredible anxiety. So I decided to address the issue, but then move on with my life while I wait for answers, or until the next time I contact someone for a solution. It's easier to do that while I'm clear-headed, anyway.

I will say that not all customer support services are like my experience with Twitch’s customer support. Amazon for example has excellent customer service. (Of course, their poor treatment of their employees is questionable, but that’s another conversation.) They actually answer questions quickly and try to solve the problem right away. Disclaimer: This post is not sponsored by Amazon :P I just really like Amazon’s services.


WE’RE ALL KINDA INCOMPETENT… AND THAT’S OKAY

I've realized that the adult world is basically a bunch of kids pretending to be adults--no one knows what they're doing and they're just making it up as they go along sometimes in order to survive.

This means you can't rely on people to be giving you correct information. I always anticipate people disappointing me or being wrong, because it happens all the time.

But that doesn't mean I should live in fear and anxiety about being disappointed. I try to have a cold and factual approach to these situations. If I'm too emotionally invested or get my hopes up, I'm just setting myself up for failure.

I can proudly say that I have overcome much of my anxiety (and emotional distress) around solving issues like the ones in this post. Of course, I still get reasonably angry when people are unhelpful or dishonest, but I’m not completely paralyzed by these situations as often. That’s progress.

Moral of the story:
Be annoying. Ask questions. Be a Karen.

~January


In Self-Advocacy, Balance is Crucial (Alyssa)


TW: cults, extremism, mention of anti-vaxxers, Autism Moms™️, and aspergers

One of my interests is analyzing cults and cult-like mindsets. I worry sometimes about how there is risk of extremist thinking on different sides of the conversation around autism, i.e. Autism Mom's™️ and anti-vaxxers, but also even in groups with fellow autistics.

I'm noticing a trend in some corners of Facebook where autistics are policing each other's language and tearing down other autistic self-advocates for not advocating "perfectly" or to their expectations.


THE "A" WORD--ASPERGER'S 🤐🤫

I have stopped using the term Asperger's in most of my advocacy work due to its controversial history, but I disagree with the practice of completely banning the term from being uttered. "Asperger's" is useful as a shorthand in some circles as a way of describing a particular type of autistic experience, to those who may not share that experience or have exposure to Autistic culture on a daily basis.

Of course, it's not a diagnosis anymore in the US, so I don't use it as a diagnostic label in spite of the fact that it was my original diagnosis. It took some getting used to, but I am happily adjusted to calling myself Autistic.

Along with banning "Asperger's" from people's vocabulary, I also disagree with outright attacking people who self-identify as having Asperger's (NOT including aspie supremacists), especially if they are from other countries as it's still a diagnosis outside the US. 

For some, it was their original diagnosis and helped validate them as "not broken," giving them a name to their experience. Nowadays, "Autistic" serves the same function, but those many grew up (at any age) with an Asperger's diagnosis can't easily erase the term from their vocabulary or memory.

There is also the issue of placing stigma upon those with the Asperger's diagnosis, when instead, that should be directed at Hans Asperger and his nazi ties. The people with the diagnosis didn't do anything wrong.


LANGUAGE AND SYMBOL POLICING 🗣️🧩♾️

I know most of the autistic community (including me) prefers identity-first language ("autistic person") and rejects the puzzle piece symbol. I understand the problematic history behind the puzzle piece and person-first language ("person with autism") and absolutely believe we should educate people about it, and adapt identity-first language and the Neurodiversity infinity twist symbol as the default.


But is it right to mandate that every autistic person adopts the same symbols and identify the same way?

Some still like the puzzle piece symbol and prefer person-first language. Perhaps they were brought up with the medical model of autism, like many of us were, and are not yet aware of the Neurodiversity Movement (which tends to favor identity-first language and the infinity twist symbol).
(It's worth noting that a very small minority of autistics who are aligned with Neurodiversity do have a preference for PFL and the puzzle piece.)


I'll educate the unaware on my viewpoint, especially regarding the puzzle piece's connection to Autism Speaks and other stigmatizing organizations, but I'm not gonna demand that they identify the same way I do. It really feels... extreme and a bit cult-ish for me to have such expectations.

They might be in a different place in their journey of self-acceptance, or coming from a different perspective, and I want to respect that.


AUTISTIC INFIGHTING 🤼‍♀️

There is also immense pressure on autistic self-advocates to advocate "perfectly" according to specific expectations, and a trend of punishing them for being politically incorrect or making a mistake. For instance, Jaime Heidel (The Articulate Autistic) had a wonderfully helpful Facebook page facilitating conversations between ND and NT folks. I thought it was reasonable and well-balanced.

Her page is now gone because she made an unintentionally racist statement in her post.

I'm not justifying her comment or the impact it left, but it was just one infraction on her largely helpful page. I'm not sure exactly what went down, whether she removed the page herself or others got it shut down, but the complete removal of her page seemed too drastic for her error.

She absolutely needed to be held accountable, but she was bullied and harassed off Facebook before she got the chance to make amends.

These trends are seeming increasingly similar to what I've seen in some SJW and extremist leftist groups (for the record, I'm left-leaning and do acknowledge that this happens on both sides of the political spectrum). Vicious attacks, blocking and banning due to differing opinions on language/approach, raiding people's personal Facebooks, violent posts and threats, rejecting reasonable criticism, and doxxing. These are all Very Bad Things™️ and we should aim to avoid them.


Let's do our best to respect our fellow autistics, and--dare I say it--even NT's, and aim to make positive change by reasonable approaches. It's helpful to get all sides of the story and be critical (even of our own ideas) without being dismissive, disrespectful or aggressive. We're stuck on this planet together so we may as well try to find ways to get along.

~Alyssa

(Special thanks to Adam of Differently Wired
☻)


Saturday, February 22, 2020

My Alters ~ The Lushia System


If you haven't seen my previous post/video on my multiplicity, please watch it here first. It provides vital context for this video.


Alters List (skip to an alter):
1. Alyssa: 0:47
2. Ayden: 2:06
3. Shira: 3:03
4. Shadow: 4:08
5. Seamus: 4:55
6. Suki: 5:16
7. January: 6:18
8. Red: 7:52
9. Lushira: 8:08
10. Bear: 8:51




MORE INFO ON ALTERS:

MORE INFO ON MULTIPLICITY:


DID YOUTUBERS

Any comments that are invalidating, triggering or abusive will be removed, as such comments could be distressing not only to me, but others who might be reading the comments who have DID or OSDD. This includes comments suggesting that me or anyone else's multiplicity is fake. Believe it or not, the fear of being "fake" is VERY common for people who are legitimately multiple, and comments suggesting that can be triggering. So, please be nice.

If you are concerned that anyone claiming to have DID/be multiple is faking, please watch this video.

CREDITS
"Elf Meditation Preview" by Kevin MacLeod (https://incompetech.com)

My Multiplicity ~ The Lushia System


Click here for a video on my alters

Video Transcript + Blog Post

I am multiple.

Which means I have multiple personalities.

If you've ever heard of Multiple Personality Disorder, which is now called Dissociative Identity Disorder (DID), I seem to meet all the criteria.

However, it's quite possible that I could have something called Other Specified Dissociative Disorder - Type 1b (OSDD-1b), which is very similar to DID.


WHAT IS DISSOCIATIVE IDENTITY DISORDER?
WebMD has an accurate and easy to understand description of DID.

"Dissociative identity disorder is a severe form of dissociation, a mental process which produces a lack of connection in a person's thoughts, memories, feelings, actions, or sense of identity. Dissociative identity disorder is thought to stem from a combination of factors that may include trauma experienced by the person with the disorder. The dissociative aspect is thought to be a coping mechanism -- the person literally shuts off or dissociates himself from a situation or experience that's too violent, traumatic, or painful to assimilate with his conscious self."

DID is often caused by repeated childhood trauma, which happens before the personality has the chance to become consolidated as one. 

This is how the different personalities or "alters" are created. 


HOW DO I KNOW I (possibly) HAVE DID?
Now, you might be asking: Alyssa, how do you know if you really have Dissociative Identity Disorder?
First of all: that's my business.
But I'm going to answer that question anyway.

My answer to that is that I have examined my experiences very critically and carefully over a long period of time (around 12 years), researching various different mental health conditions and ruling out others as possibilities while trying to find the most accurate name for my experience.

I do have other diagnoses like autism, PTSD, and OCD, and they do overlap in some ways, but I found that the alters I had developed were specifically a DID thing, so I know it's not my autism or anything else.


SELF-DIAGNOSIS IS VALID
I should mention that I do not have a diagnosis of DID or OSDD, but similar to how I believe that self-diagnosis in the autistic community is valid, I think self-diagnosis for DID or OSDD is also valid. Psychologists may be "experts," but the best expert on YOU, is YOU. DID can be tricky to recognize in oneself (and I'll explain why later), but self-discovery of DID can and does happen, like it did with me.


BUT WHAT ABOUT THE STIGMA?
DID isn't a disorder I would casually self-diagnosis, as it's not only super complex but also extremely stigmatized. Why would I want one of the most stigmatized disorders?
The important thing for me is that I know have a NAME for what I'm dealing with, and a way to search for resources that can help me function better.


OTHER TYPES OF MULTIPLES/SYSTEMS (Besides DID)
I should mention that if am unable to get a diagnosis of DID due to a lack of resources, of if it turns out I don't have DID after all, I will still say I am multiple. The reason is because there are many different types of multiplicity, and not just DID or OSDD systems.
(By the way, a "system" is a collection of alters or "headmates" within one person or body. This is a term that can apply to people with DID, OSDD, and other types of multiplicity.)

I am not an expert on the multiple community outside of DID and OSDD, so if you want to read about other types of multiplicity, I included a link in the description. Please check that out.

I believe that the other types of multiplicity that are NOT DID or OSDD just as valid since I am very much aligned with the Neurodiversity movement. I am a skeptical person by nature, but I'd rather validate others and be inclusive of their identities, instead of gatekeeping and deciding who is a TRUE multiple and who is not. So I thought I should at least mention in my video that DID and OSDD systems are not the only valid ones. They are just the type that I relate to best.


CLUES THAT I MIGHT HAVE DID
Now, back to my own multiplicity. What are some clues that I might have DID?

So... DID a very sneaky disorder due to amnesiac barriers between alters. We each have different memories of our past, and poor memory overall. This is one reason why it took me so long to realize that DID is likely what I'm dealing with. Looking back, I have had alters noticeably emerge since I was a teenager.

They would do things like leaving notes I wouldn't remember writing. Or writing in my journal in a very different tone than what I thought my personality was like. Other people had also told me that my behavior and speech patterns were quite variable. And I thought I was possessed by a demon when my voice and demeanor would suddenly change, and I'd feel like a different person. I had moments when I would revert to a childlike state.

I even had a crush on one of my alters without realizing it was an alter--I thought it was just an imaginary friend. If you have seen my documentary and some of my content with me talking about my fictional world Vael, that was actually Seamus. Seamus is an alter.

I had either at the time forgotten about these experiences or written them off as a cringey teenage phase.

But they never went away.

 In other words, they were not a phase.


MY VARIATIONS
I had always acted inconsistent, my demeanor and preferences changing rapidly, in such dramatic ways that I sometimes didn't know who I was or felt like I was just faking or lying to people. (And I know that sense of faking or impostor syndrome can come with autism or ADHD, but in my case it's even more heightened, I'd wonder why I can't just be consistent.)

It didn't make sense to me that I could be really shy, sweet and innocent one day, and another day I'm bold and brash and crude.

Some days I'd say I love video games, other days I'd say "I'm not really a gamer." Some days I'd feel masculine and other days I'd feel feminine (alters can have different genders). 

Sometimes I look in the mirror and am startled because I look unfamiliar and strange.

Each alter has different patterns of speech and ways they type messages. At least each of my alters.

Each system is different. Some alters seem very similar and are supposed to be covert, where other alters are overt and very obviously different from each other. Mine can be both covert and overt.


SPEECH AND COMMUNICATION
But they definitely have different patterns of speech and different ways they type messages. I wanted to mention that part because you might notice my voice changing, especially if you watching my gaming livestreams lately, my voice is changing a lot... that's why.

My Gaming Channel & Livestreams (where my alters hang out)


PREFERENCES AND BELIEFS
They also have different preferences, like favorite colors and foods and video games and hobbies. They also have different ways of relating to the world. So different approaches to situations, some are more introverted or extroverted, they might have different opinions on things, different religious beliefs even. Most of mine do not have religious beliefs, are atheist or agnostic, and one is spiritual.

It's all very interesting, and I'm still trying to wrap my head around it, even though it's been under my nose this whole time.


ABILITIES
My abilities also would change drastically. One of my alters has a talent for making teeny tiny paper flowers, while another one has such poor motor skills that I can't trust them to hold a knife or glass dishes. Some of my alters can sing and some cannot. Same with drawing.
And some are great with typing while others prefer writing on paper or speaking verbally.


SEXUALITY
Some are asexual, some hypersexual, some don't even register sexuality as a thing that exists.

I realize that there is a lot of stigma around Dissociative Identity Disorder, and that by being open about being multiple, I am taking a risk. But to me, that risk is worth it, because I don't want to hide myself away to make other people comfortable.

So the reason I am telling you about this, is because I am going to allow my alters to be themselves in my videos whenever possible (they'll still be polite), because it's utterly exhausting trying to mask or hide them. It's similar to how it's exhausting to mask autistic traits when you naturally want to stim and be yourself.

I am open to questions about my multiplicity, but I may not talk about it extensively (especially regarding trauma) because I don't want to accidentally trigger alters out or cause them to have flashbacks.

Questions about my alters as people, how to tell who is who, etc. are much easier to answer, and my alters would likely appreciate it and feel seen.


"FRONTING"
Whenever a specific alter is talking or aware of what's going on most prominently, that means that alter is fronting. Who fronts most often depends on who I'm talking to, what we're talking about, activities we're doing, my mood, and the state of my body/mind.

For more info on my system, please watch the video linked in the description or somewhere on my screen.

[See my blog post on my alters by clicking here]

Also, from now on, please call me Lushia. Alyssa is the name of only one of my alters, while Lushia is the name of my system as a whole. You don't have to remember the names of each of my alters, though sometimes they do like being recognized. Also, I do have some alters with different genders, but you can use she/her pronouns regardless of who is fronting. None of us really mind.

End video transcript
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MORE INFO ON MULTIPLICITY:



Any comments that are invalidating, triggering or abusive will be removed, as such comments could be distressing not only to me, but others who might be reading the comments who have DID or OSDD. This includes comments suggesting that me or anyone else's multiplicity is fake. Believe it or not, the fear of being "fake" is VERY common for people who are legitimately multiple, and comments suggesting that can be triggering. So, please be nice.

If you are concerned that anyone claiming to have DID/be multiple is faking, please watch this video.

CREDITS
"Elf Meditation Preview" by Kevin MacLeod (https://incompetech.com)
License: CC BY (http://creativecommons.org/licenses/by/4.0/)
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Art by Chanel Sanci
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Stock videos by Videvo

P.S. If you noticed a different font/format in this post, it's because I am switching to sans font, and adjusting the formatting to make my posts more readable.