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.


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.


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.


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.


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.


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.


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.


(Special thanks to Adam of Differently Wired