But there are people who also seem to believe that because they’re #ActuallyAutistic, they can tag any post #ActuallyAutistic. So they tag every single post they make, ever. Yeaaaahh no.

It’s still annoying spam if the content of the post is not about autism, or at least disability. People might let you get away with it if you only do one post like that every once in awhile. But when it’s multiple irrelevant posts clogging up the tag, you need to stop. And if people ask you to stop, don’t throw a public tantrum accusing them of being “fake autistics” who want to “sit on the political sidelines”.

It’s not a political issue. It’s an organizational one. Flooding a tag (any tag) with posts not specifically about that subject confuses others and makes it difficult for people to find what they’re looking for. People don’t have time to scroll through Twitter tags full of posts that aren’t what they’re looking for. If you use hashtags in a thread, only use the tag once per thread, to prevent it from showing up several times in a row and forcing people who follow the tag but not you, to have to scroll past every thought your brain spit out today.

It seems a lot of people were taught that when you mention a topic, you hashtag it. And fine, but you have to use that judiciously. Tag a person or group and they see it, and they think you’re talking to them. So don’t start that conversation with a random stranger unless you’re prepared to engage in a productive manner. AND realize that you could be attracting trolls and bullies to other people who use those tags if you use the wrong combo of tags.

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Hashtag Policing and Microaggressions

A woman who is not autistic posted about her campaign for autistic rights in memory of her deceased son. She made this post in the #ActuallyAutistic tag on Twitter and people.flipped.out. It turned into this whole controversy of We Shouldn’t Gatekeep a Tag vs Our Right to Ask a Rude Person to Leave.

Do I think she was rude to do this? Absolutely. It doesn’t matter if she’s a nice person who is working for a good cause.

There’s such a thing as Good Internet Manners. For example, TYPING IN ALL CAPS is considered shouting, you always ask and credit if you’re going to repost art, and you shouldn’t ask questions a two minute Google search could answer. Another common rule which has sprung into place on sites which use tags, like Twitter, Instagram, Tumblr, is that it’s rude to post inappropriate information in the wrong tag.

“It’s not against the TOS” is not an excuse. You are not legally banned from sitting down in a restaurant and loudly talking about your colonoscopy in detail, but you have to, as an intelligent adult, realize it won’t be met with a good response. You’re not just risking offending people, you’re wasting their time by making them scroll through your irrelevant and/or annoying posts. In the 21st C, wasting other people’s time online, is considered insulting.

But the autistic world has its own perception of manners as well. NT often don’t understand these rules, and dismiss them. It doesn’t occur to them that Autism is its own culture and that people in that community have their own opinions and feelings. And that you’re not only not the first person to do that rude thing to them, you may not even be the first person this week.

It’s something people with certain types of privileges, interacting with people who don’t have those specific privileges, don’t always grasp. They’re thinking, “But I’m a good person and I didn’t mean to cause a problem, I hardly ever do things like that. It was a mistake!” But to the other person or group, the thing you just did or said is something they experience constantly. This is a “microaggression” , small, constant indignities thrust on you by someone with power over you.

For autistic people (and others with certain types of disabilities), having other people not respect your consent, not listen when you say “no”, is a very, very common microaggression. If you don’t become fiercely vigilant about maintaining boundaries, even with things that seem trivial, you lose control of everything.

Posting in the #ActuallyAutistic tag when not autistic yourself in order to promote your project is similar to an abled person repeatedly parking in a clearly marked disabled parking space (maybe even in front of a medical facility) while a wheelchair user is sitting there watching it happen. When confronted, the abled driver tries to claim it’s okay because they have a disabled child but…said disabled child is not actually present in the car.

#ActuallyAutistic was apparently created because the other related tags became overcome with non autistic parents, ABA proponents, Ableism, and supporters of exploitative organizations. Autistic people wanted a tag which was filled with the own voices of people who were actually autistic and not being interrupted, talked over, insulted, ignored or patronized. Where they didn’t have to listen to sob stories from people who openly abuse children in ways no one would ever put up with if the children were NT. So that’s one reason why it’s so vital for people who are not autistic to respect the request of autistic people and stop posting in the #ActuallyAutistic tag.

This had already been explained to the OP more than once. People also pointed her to tags which might be a better fit for her message. I’m not saying she did it on purpose in order to upset people, I’m saying there’s a chance she simply didn’t take autistic people’s feelings on the matter seriously.

There are many people who assume she made an honest mistake and said it was unfair and unwelcoming to “gate keep” the tag. That #ActuallyAutistic is a tag anyone should be allowed to use. Again, technically, there’s nothing in Twitter’s TOS that says you’re allowed to ban someone from using a hashtag. But again, this is about what’s legal vs what’s polite. It’s rude to shun someone who makes an honest mistake, it’s rude to call out someone else’s rudeness…unless they made said “mistake” while being fully aware they were doing something they’d already been asked not to do.

Bullies do this, repeatedly doing something they know they were already asked not to do, but pretending they “forgot” or “it’s just this one time, don’t make such a big deal out of it”. But so do people who have a certain type of privilege over others (Ableds/NT do it and men do it to women and white people do it to PoC), they do it not because they’re cruel, or even because what they want is all that bad anyway (in this case, the OP was promoting an actually really good cause) but because in their minds, getting what they want is more important than your need for them to stop doing that. You let one person misuse the tag because they “meant well” and “we can’t judge” and everyone will think they can do it.

Two more non autistic people have posted in the #ActuallyAutistic tag since then.

But it isn’t just an autistic person issue, it’s an issue of commonly understood standards of politeness. Manners are the unwritten rules of a community and their purpose is to make sure everyone is comfortable. You can’t get in trouble for violating Twitter’s TOS by posting something in the “wrong” tag, but you do risk making a lot of people angry because you were rude.

Because the OP should have already known, as a prolific user of Twitter, that there are general Basic Tagging Rules already in place across the entire site (and many other similar sites such as Instagram and Tumblr). People wouldn’t have liked it if she’d done something like that with a post about another subject, in a tag about another subject. Would users in a tag frequented by more NT respond less dramatically? Mmm…maybe, it depends on the subject and how inappropriate the post was for the tag. But people certainly don’t like it when other users hijack a tag or post to promote their own stuff. Period. It’s called Spam and it’s a Serious Internet No No.

This isn’t new information. It’s been the rule since like, as long as I’ve been online and I first came online in like, 1997. Tagging etiquette is newer, because tagging is a newer development, but the basic idea is the same. You don’t repeatedly and knowingly post things in the wrong place and not expect people to get, at the very least, annoyed. Sites with tagging systems take this more seriously, because on many of these sites, it’s difficult to filter posts or make them closed to only certain people. So it becomes really important that everyone understands and respects the tagging system.

The OP claims she was invited to use the tag by autistic people, which is contrary to what a lot of autistic people are saying, which is that they repeatedly asked her not to use the tag.

It seems, upon further investigation, that members of the ADW were involved (“Autistic Dark Web, a cabal of people who troll… harass and bully autistic people who believe in Neurodiversity… and try to make them fight with each other). Associates of the ADW may have been the ones who told the OP it was okay to use the Actually Autistic tag.

You know what?  Not actually surprised. 
1) In the world of  businesses which explicitly operate under Christian values,  the idea they’re selling to the secular world is that if you have a  great work ethic and strong moral values, God will bless you with success.  The message is, “See?  Christians make better products because they’re good, hardworking people you can trust.  You can feel safe about shopping at our place.”  One thing they used to get away with but less often these days, is to quietly forbid all sorts of things which aren’t actually family unfriendly but which tap into the primitive parts of people’s brains that go “I don’t want that around my kids”.   So  people are getting the general impression that  the food at a  fast food restaurant  run by Christians  is healthier.

2)  This  whole MSG  thing  explains why so many people are so desperately obsessed with  Chick fil  A.  And why they get so irrationally furious with anyone who doesn’t like the food… Why there are so many gay people who still refuse to give up eating there.   The MSG  (and holy cow  TONS of sugar!) makes them think the food is better than it  ever really was.  Which is fine,  every fast food  place uses it, Chinese food uses it,  it’s in all sorts of  stuff you buy at the grocery store. And it’s not as dangerous as we thought. They’re not exactly lying about using it, AFAIK. But it’s a  bit misleading to your  customers to  imply or allow them to go around with the misunderstanding that  the food is better because of your  strong moral  values  when it’s  just  a  cheap additive everyone uses. 

Blood test?

Why are doctors so creepy about getting blood tests? It’s the first thing they turn to, and it’s like they’re unable to give you proper medical care without one. Some of them never think to ask for a urine test first…or even worse, almost none of them I’ve ever encountered have thought to ASK THE RIGHT QUESTIONS before doing any testing at all.

They want concrete answers from a lab, in other words, from another scientist, rather than taking the time out to listen to what the patient is trying to tell them. They could ask the patient a series of specific questions which could give them an idea of what to be concerned about. I can’t tell you how many doctors just don’t ask.

Before we get into the whole blood test rant, I do need to mention that this doctor’s office also said I’d gained 20lbs. But they listed my weight on the previous visit as 112, so my weighing 135 was cause for concern. Except, I’m pretty sure I didn’t weigh 112 in October, because I haven’t weighed 112 in yeeeearrs. It was more likely 125 or 129. Even if I did, it certainly isn’t my normal weight, and my dropping to 112 is more of a cause for concern than my weighing 135! In fact, six years ago I weighed 150, so being 135 is great!

See, this is the sort of info doctors need to ask about. Lest you tell a patient she’s gained a worrying amount of weight when she’s actually lost a healthy amount because your office mistakenly listed a weight which would have made her worryingly underweight, as her normal weight.

They also listed me as a man on my previous visit report.

I do need to point out that my doctor said I would not have to get a blood test if I didn’t want to. And I agreed that I would, if other testing turned up the possibility of something serious. And now I really wish I hadn’t given in on even that much. I should NEVER give in to these things when I don’t have to. I should NEVER offer them any sort of opening to what they want. Because everything got ugly very quickly. Almost like they were only paying lip service to the idea of letting me decide and got way too overexited when I cautiously agreed I’d do it if a urine test turned up something worrying. It’s super disturbing.

I was prepared to do it. But I also knew that I was not able to handle not being in control of the situation. It’s not just taking the blood, it’s taking more blood at one time than I can handle.

Went over to the hospital with my case manager. The lobby looked very nice, comfortable chairs, tasteful carpeting, low lighting and yet as we walked back to the lab, we entered a low ceiling ed tunnel of florescent lights and cracked linoleum, to enter a room the size of a closet. Three people barely fit in there, so I was already feeling crowded. An absolute bait and switch. Oh, and totally rushed, like the lab tech just wanted to jab and move on. Then I was told they wanted to take three vials.

“Oh no, you can have one,” I basically told them. In fact, I didn’t know if I can handle more than half , maaybe a 3rd of a vial but I was trying to be cooperative.

“If you let us take three now, you won’t need to come back.”

Stop. making.assumptions. about what will make my anxiety better. I realized that I could handle getting the tiniest amount taken every once in awhile, much more than the trauma of having three vials taken at once.

“You have enough blood to handle it.”

Well, I’m anemic, so I’m not sure. But it doesn’t matter. It’s not about whether I’m right, it’s about whether I want to do the thing or not. And I didn’t want to without some extremely reasonable accommodations. And if you won’t compromise, then it becomes a weird power struggle. It reminds me of other times when a therapist or medical professional has tried to convince me to agree to a procedure I don’t want, and they pretend, for a short time, that they’re willing to use logic and persuasion. It turns into this big drama due to their inability to accept the word “no”, and then they lose patience and take a dramatic action because I must not, under any circumstances, be allowed to “win”.

And they started trying to convince me. It’s patronizing and infantilizing and creepy. They know they need your consent, they may even be prepared to wait you out, but they’re approaching it as if it’s an argument they can and must, win. I had to go out in the hall, because the size of the room meant the lab tech was LOOMING OVER ME as they tried to convince me.

The lab tech became confused, and insisted that my doctor’s directions took precedence over mine. They also referred to my female doctor as a “he”. So basically, they believed the instructions of someone they’d never met or seen before (hence the misgendering) were more important to respect than the person standing in front of them whom the blood belonged to, whose insurance was paying for this.

It’s…it’s my blood. You can’t take it without my permission and you can’t take any more than I say you can have. As long as I’m consciously able to retract my consent and it’s not an emergency, It doesn’t matter what my doctor says. If I had to sign a paper saying I absolved the lab tech of liability, I would have signed it. As it is, I walked out rather than continue to be coerced.

But now my doctor says if I want another appointment for a blood test, I have to make it myself. She did get me an Ativan for next time, but she didn’t speak to me directly, so I haven’t been able to discuss the whole “proportion of my blood you’re allowed to take” issue. This could indicate she isn’t willing to negotiate on that. So we’re already getting passive aggressive. Don’t start a power struggle because I disagreed with you on one thing.

And Ativan will only get me to a normal level of scared to take a blood test. I still need to know that I can negotiate how much blood they take (the last appointment I used Ativan for, not same doctor, not a blood test, the doctor emphasized repeatedly that I could withdraw consent for any part of it, whenever I needed to, for any reason. ) Because the amount I was trying to negotiate, was the minimum I believed I could handle without being drugged, it doesn’t mean I was okay with any of it. I was just trying to get through it on my own terms.

So, my landlords claim that on page 15 of the lease, the landlord has the legal right to raise your rent without 30 days warning if you fail to show up for your rental re determination on time. Everyone I’ve mentioned this to has reacted with a disbelieving “Whaaaat?”

In the US, landlords can only raise your rent once a year, and/or in between signing a new lease. This is regardless of how many units they own or whether or not the tenant has a subsidy. Our property managers adhere to that law. But it’s also the law in almost every state (including mine) that a landlord must give tenants 30 days warning of any rent increases. I saw no mention, anywhere I looked, that there are exceptions for public housing/Section 8. I also didn’t see any exceptions mentioned for failing to show up to your rent re determination within a certain length of time.

They cannot charge you rent that you didn’t agree to pay or even know about. They can raise the rent, but they can’t charge you the new rate until you sign the new lease. And you can’t sign the new lease if you were never given one. The scare tactic just doesn’t make sense if you think about it- if someone missed making their appointment to renegotiate the rent on time, you can’t just penalize them by raising the rent without warning, then try to charge them back rent. People can’t pay a bill you deliberately chose not to tell them about.

It is possible that there’s a legal loophole for when the landlord can’t get in touch with the tenant to warn them. That makes sense. But they have our phone numbers, and the management is there on site every day, so the odds of not being able to communicate with a tenant are slim. Other landlords do try to pull things like this-it took me two bad experiences to learn never to give a landlord an “emergency contact”. You assume this is in case something bad happens to you, but the landlord interprets it as “it’s for if something bad happens to the landlord, ie, your rent check bounced”. However, it’s a bit more despicable when you’re absolutely well aware that the majority of your tenants are some level of protected vulnerable class and the government is trusting you not to screw these people over.

If something is illegal, it’s still illegal whether or not you signed a contract. This precedent has already been set, for example, BDSM relationship “contracts” are legally unenforceable, especially if you signed away your right to defend yourself from something which is already illegal, like imprisonment or assault. For another example, no one can legally force you to help them rob a jewelry store, even if you signed a paper saying you were okay with that.

Likewise, a landlord probably can’t enforce a clause in the lease which violates state or federal tenant’s rights laws. No matter how many tenants they trick into agreeing to it. Your rights are still your rights whether you are aware of them or not. But a lot of my neighbors are disabled, elderly, or they’re new to this country and speak English as a second language or their immigration status is still shaky, or they’re very poor with no where else to go, or they’re all of those things. Even if they’d seen the clause on page 15, they would have signed the lease anyway. Because after you’ve waited up to a year or more and you either don’t have a home or you badly need to get out of the one you’re in, and you can’t afford market rent, you’re signing whether or not you noticed the suspicious clause.

Did my landlords try to pull this on me? Actually, no. But I thought that’s what they were doing when they sent a demand for back rent. I had gotten my rent re determination appointment in on time, so I was livid that I was being penalized for breaking an illegal rule I hadn’t actually broken. But it turns out, it was just because they lost my rent check. For the third time, the second time with the same check (which we’d already had entire meeting about). And the first thing they did was blame me and send a demand. They could have, IDK, contacted me and asked “did you pay your rent last month, we can’t find the check” and I could’ve said “I did, I have a copy, let me bring it in”. And this could’ve been solved in one day with a lot less frustration. It never occurred to me that this was about a missing rent check, since I not only already provided proof of payment but had sat in their office discussing it with them…two months ago. If I can find the evidence, why can’t they?

At least this time they didn’t send me an eviction letter they should know they can’t enforce (like they did the first two times).

Can autistic people lie?

Yes and no. I mean, people are forced to learn because that’s what NT s demand of us, for us to be what we’re not and not to bother them or make life inconvenient for them by being weird.

Can autistic people tell when someone else is lying? Absolutely. They’re often much better at this than NT s are.

  1. NT’s have generations, centuries, even thousands of years, of complicated layers of social cues. Some are universal, some are dependent on the culture in question. NT lying relies on knowing and understanding these cues. Certain words, suggestions, body language, are all used to manipulate those who understand the code. It IS harder to lie if you don’t know the codes.
  2. NT’s have a sort of a Weirdness Filter. They will not notice, or politely ignore, something that doesn’t fit the normal pattern when it would make an autistic person or someone with OCD or ADD really uncomfortable. For example, this study was done where a man walked through a crowd of people and kept repeating “I’m a gorilla”. Most autistic people present admitted they noticed, while most NT either didn’t notice or wouldn’t admit they had.

If getting other people to believe your lie relies on other people playing by the established communication rules, and your target doesn’t understand those rules or won’t acknowledge them…and if they have a genetic predisposition to noticing small incorrect details and inconsistencies that people without their “disorder” will almost deliberately ignore…they’re actually going to be quite hard to really successfully lie to.

A lot of autistic people “can’t read faces”. But when NT s talk about facial expressions and empathy, sometimes what they really mean are the performative versions. Someone who is saying nice things, we’re supposed to pretend that’s how they feel. Someone who doesn’t say nice things couldn’t possibly feel empathy. Smiling means happiness! But an autistic person might look at someone who is smiling, and saying nice things but the smile doesn’t reach their eyes and they seem kinda angry, and feel confused at how they’re supposed to react. This person is clearly not telling the truth, but the social cues the autistic person gets from everyone else, is that we’re supposed to ignore this.

Plus, when you get right down to it, knowing someone is lying and being able to prove it or do anything about it are not the same thing. There’s finding yourself in a situation where you’re pretty sure the person you’re with isn’t trustworthy, but having been taught for years that you’re not a reliable witness, you second guess your own instincts. There’s knowing for a fact you’re being manipulated but also suspecting it would be dangerous to admit you know that. Disabled people know that calling out an Abled person on their BS is a risky move at best.

There’s genuinely having no reason to think that person might lie to you. It’s not a situation where you can’t tell if someone’s lying, it’s that most people would not expect to be tricked or lied to in certain situations. A teacher, a cop, a priest, a friend’s parent, someone you’ve been friends with for years who has never done something like this to you before. And when it happens, people will blame your disability, despite this being the sort of thing which could happen to literally anyone.

Then there’s loudly and repeatedly telling other people that this person is a liar, and having other people ignore you or tell you to shut up or siding with the liar. This happens a lot to autistic people for some reason. For some reason, of all the disability groups, when autistic people complain about something, NT s often immediately double down on their opinion. Just when autistic people don’t like something. Autistic people expressing autonomous, intelligent, independently formed opinions gets their hackles up like no other complaints from a disabled group ever would. NT s, who claim autistic people can’t lie or tell when someone is lying, immediately disbelieve autistic people all the time.

NT have constructed such a convoluted system of communication that half of everything that comes out of their mouths is on some level, untrue or doesn’t mean what it sounds like it means. And autistic people, who tend to say what they mean, and mean what they say, end up in these conversational traps where their very straightforward honesty is seen as proof that they’re lying. I know, this doesn’t make sense. But that’s what happens.

On the Tech/Economics model of disability

The stair climbing wheelchair is a great idea… for getting around society’s general refusal to accommodate disabled people who aren’t small, adorable children. However, it also only serves people who can afford to buy their way out of a problem.

Unfortunately, a lot of disabled people had the misfortune to be born into families where it was made clear that their families would not be able to help them financially…and their families made zero preparation for the possibility this wouldn’t work out. They can’t afford to have a disabled child. Then, when seeking out financial help they’re told they should be relying on their families.

Not all forms of Autism come paired with a learning disability. But I’m also pretty sure that sometimes, the difference between an under employed, under educated autistic person who has believed their whole life that they’re worthless and stupid due to their un accommodated “learning disability” and is contemplating just ending it because they have no relationship, no kids, no purpose and can’t get off welfare (despite having once displayed near genius levels of talent at something), versus a highly paid professor of physics at a prestigious university, is the medical care and early education their parents were able to afford. Not every autistic person who grew up with money has it better, because it can also mean their families can afford more expensive mistakes, like ABA.

But how often, when you’re poor, are sensory issues, social difficulties, learning disabilities, chronic pain, etc, attributed to laziness, brattiness, stupidity or a moral failing? How often does something like Autism get misdiagnosed in working class children as something cheaper to treat?

How many times have I tried to explain an Executive Functioning issue, a sensory problem or a fear which gets in the way of my accomplishing a task, and had someone else laugh at me or act disgusted and/or exasperated and tell me I just need more self discipline?

When I tell a therapist that the only real way out of my problems is lots and lots of money, and they laugh like “don’t I know it gurl”… What I really mean is, how many of my problems wouldn’t really be problems any more if I could afford the technology and help to just fix and/or avoid the issues, instead of having to constantly be slaveringly nice to people who don’t offer concrete solutions.

How many issues do I have which are so much worse simply because I can’t afford a way around them?

And before you say anything- when you’re living off government benefits, sometimes you’re not even allowed to purchase certain accommodations whether or not you can afford them. I can’t change out my shower head, or install a dishwasher or in unit washer/dryer for my clothes or buy an air conditioner which isn’t a sensory nightmare. These subsidized apartment units are held to high cleanliness standards, complete with quarterly inspections and yet… the original builders and current management refused to provide the technology which would make doing this faster and more efficient for everyone.