#mod aira

Ah, thank you for offering us an opportunity to share something very important to us. For those who aren’t aware, there is an organization in the US called “Autism Speaks” which claims to be a charity working to help autistic people. They are not a charity. They are a hate group.

Autism Speaks is not run with the help of any autistic people. It’s run by allistic people who think of autism as a horrible disease that needs to be eradicated. They run propaganda ads talking about autism like a plague which is destroying lives. They compare it to cancer. One of their propaganda videos famously shows a member of their board talking about contemplating killing her autistic child - while the child is in the room listening to her. Their goal is to “cure” autism - to wipe it off the face of the planet. They don’t see autistic people as people, but as tragic burdens to those around them. They want to take care of all the poor moms and dads whose lives were so tragically ruined when they found out their child was autistic. And they support organizations that torture autistic people and call it “therapy”, like the Judge Rotenberg Center.

This is not a charity. They think of us as broken, inhuman monsters who should be expunged from society. They are not helping us - they’re trying to exterminate us.

Their propaganda is a big part of why there is so much misinformation out there about autism and autistic people. The average person is likely to believe their claims that autism is a horrible disease, that the best way to help the people who have it is to cure them and make them “normal”. Especially the parents of autistic children might like the idea of “fixing” their kid.

News flash: We’re not sick. Autism is not a disease. At worst, it can be considered a disorder or disability, depending on your definition of such, but the vast majority of autistic people are perfectly happy being who we are. Our biggest hurdle isn’t some terrible defect in ourselves - it’s the negative attitudes and lack of understanding in those around us, and the expectation that our primary goal in life should be to act less like ourselves and more like the “normal” people who make up the majority (pro tip: there’s really no such thing as normal). Autism cannot be cured, because it’s not an illness. Our brains are hardwired differently than others, and that is a fundamental part of who we are. If you asked me if I would like a cure, I would look at you the same way as if you asked me if I would like to remove the color from my pizza, because it makes the same amount of logical sense.

Imagine if someone asked you if you would like to stop being (insert your nationality here). Like, just completely remove it from yourself. What would that even mean? Removing all your memories and experiences from that country? Erasing your native language and replacing it with another one? How would that even work? That’s the kind of thing that’s being proposed here.

What autistic people need is awareness, education, and sometimes assistance, depending on our individual needs. We dream of a world where seeing a person rocking back and forth gently and not making much eye contact isn’t met with indignation, disgust, or pity, and where our strengths are valued (and we have many!).

It should be noted that recently, Autism Speaks has changed their official platform slightly, supposedly focusing less on a “cure”, but I’m afraid I don’t buy it for a second. Anyone whose goal includes a “cure” at all is not advocating for our rights, and even if they did have a different mission now, the damage is long since done. Many of us may struggle, and many of us may wish there were certain problems we could do away with, but a “cure” is not possible and our goal should not be to eliminate autistic people from the world, especially given how much we contribute to society. Very few autistic people would actually desire a “cure”, even if one were possible.

So what does this have to do with writing? If you’re writing an autistic character who gets help from a charitable organization, do NOT make it Autism Speaks. That’s not what they do. If your character has any interactions with Autism Speaks, it will be more along the lines of being told they are broken and must be fixed, having the people in their lives treat them as less than human (or as deformed or defective) because they have believed the propaganda, being told they have no right to speak for themselves, and possibly suffering abuse and even torture at the hands of those who think they are “helping”.

There are plenty of good charitable organizations to help autistic people with what we actually need. If you want your character to support an organization in your story (or support the organization yourself by giving them positive exposure in your story), try one of these (and a little Google-fu can help you find a local one for you if you don’t live in the US or UK - search terms like “autism advocacy” and make sure it’s run by actual autistic people). We strongly recommend contacting them, letting them know what you’re writing, and asking how you can include them in your story and represent their work accurately:

Autistic Self-Advocacy Network (ASAN)

Autism Women’s Network

Autistic Rights Movement UK 

Hi everyone! There will be some movement on the blog mod-wise so I thought I’d keep you updated.

Aira is very busy with life stuff and will be going on a hiatus of indefinite length. She’d like to come back some day but she doesn’t know when, or even if, she’ll be able to.

Snail got a new job (congrats!) so he will be a bit less available for the blog.

To keep the blog active, we decided to take on a new mod. Please, everyone, welcome Siena onboard! She’ll be posting her introduction shortly.

Here are some reasons that could cause an autistic person to be completely nonverbal. Keep in mind that these are mostly theoretical, and that I’d say in real life it’s never completely clear exactly why someone is nonverbal, it could be a combination of these reasons, other unknown reasons, or maybe even no reason at all and just an example of human variety.

Problems with oral motor skills: the person can’t move their mouth parts accurately enough to speak in an understandable way, or some sounds are physically impossible for them to produce. If that’s the case (and the only reason for their being nonverbal), they should be able to process language just fine, and probably won’t have trouble understanding spoken language (unless they also have auditory processing issues), reading or producing written language, and signing though it might be more difficult if they have limited dexterity.

Problems with language processing: the language center in the brain doesn’t function normally which can create problems when it comes to producing oral language (speaking), but also understanding oral language, and producing or understanding written language or sign language (this is not always the case but can happen). The problem here has more to do with the structure of sentences for instance. I’m no neurologist so I won’t be able to give much more detail about this. If that’s the main cause of the problem, the person may be more at ease with using pictures such as pictograms as a means of communication.

Problems with auditory processing: If you can’t process sounds properly, it might be impossible to understand sounds well enough to learn how to reproduce them. In that case, understanding and producing oral language would be difficult, but understanding and producing written language would not be a problem.

Sensory issues: The sensory experiences that come with talking orally can be unbearably painful for some people, whether it is the touch experience of stuff moving around in your mouth and vocal cords vibrating and stuff, or the sound experience of hearing yourself talk.

Energy/spoon levels: For all of these reasons and more, talking can be possible, but take up a huge amount of energy/spoons, in a way that’s just not worth it. When you’re already low on spoons talking can also become plain impossible.

Autistic burnout can cause someone to loose some of the abilities they used to have, and talking verbally can be one of them.

I was not able to find any research exploring the reasons for people being nonverbal. Take this as a starting point I’d say. It is true that depending on the reasons why someone is nonverbal, the types of AAC they can use can differ, so it might be a good thing to know about your character, but mainly I’d say that autistic people are so diverse that basically any combination of traits you can imagine is realistic, so don’t get too hung up on knowing why your character is nonverbal and rather focus on the impacts that it can have in their daily life for instance.

-Mod Cat

Cat’s answer here is very good. I just want to add one more small note, that sign language and written language are not necessarily linked. Sign language is closer to spoken language than it is to written language. I generally prefer sign language to spoken language, and communicate best in writing. When I start to go nonverbal, I might be able to sign (in a simplified way, with less of the grammar) even after I stop being able to talk. I then usually progress into not being able to sign at all, but I can usually still read and write at least a little, again without grammar. (But all types of communication are hard for me when nonverbal.) That’s just one specific example - basically, different people might have different levels of ability with spoken, signed, and written language, both in normal life and when nonverbal.

Imagine your hands are covered in cake batter. Or you’re preparing raw hamburger or chicken for dinner. Or you’ve been cleaning and have dangerous chemical cleaners on your (hopefully gloved) hands. Or you’re at the dentist. Or your hands are just covered in dirt and mud. 

And your nose itches.

Imagine you have to sneeze. Like, really, really have to sneeze. You can’t keep talking until you get this sneeze out.

And the sneeze won’t come. Minutes pass, the feeling doesn’t fade, but the sneeze just won’t come!

Imagine you’re having a staring contest. Something really important to you depends on this staring contest. If you blink, you lose your house, or your car, or your favorite body part.

And your eyes are so, so dry.

Now imagine you live in a society where, for whatever reason, there is a very serious cultural taboo against scratching your head. If you scratch your head, ever, in front of other people, you’re insulting everyone around you, and also their parents, grandparents, and dog. Whatever you do, do NOT scratch your head. 

And your head itches. And the more you try not to scratch it, the more it itches.

That’s the sort of feeling understimulation can be. And in a world where stimming is often not socially acceptable, it’s a feeling a lot of us have to live with on a regular basis.

Hope this helps!

-Mod Aira

Personally, I tend to experience a more “global” understimulation - mainy because I don’t suppress my stimming so I don’t really get the specific “need to stim can’t stim” feeling. But when I don’t get enough mental/ physical stimulation (for instance, staying home for a whole day just watching tv is impossible for me), i get restless, stimmy, can’t focus on anything, and my brain is basically screaming at me “need to do a thing!!” “no this thing is not enough of a thing find something else” and so on. This is not something i’ve heard talked a lot about in autistic circles so I’m not sure how common that is.

Another thing I have experienced is lack of a specific sensory input, in my case pressure. I always crave pressure in a very specific spot on my chest, or on my chest more generally speaking. I know it at some kind of tingling, “hollow” feeling that’s very hard to describe. This is one of my most important sensory needs, and when I really, really don’t have enough input, I feel a deep ache in my chest as though it were going to implode. It is a very painful experience. I often end up brusing myself by trying to apply pressure, and it stills hurts less than the alternative.

Autistic people can get migraines. As far as I know, we are no more or less likely to get them than other people. For those who aren’t aware, a migraine is not simply a “bad headache”, as many people think. It’s a different type of headache which involves light sensitivity, can involve temporary blindness or partial blindness, and other horrible experiences. I have only had a couple in my life, and they didn’t seem to be triggered by anything in particular, at least nothing that I could pin down - they didn’t seem to be related to sensory overload. However migraines do often have triggers. The triggers can be certain foods, hormones, stress, sleep issues, and many others, including, yes, sensory stimulus. So it’s possible that an autistic person could get migraines which are triggered by sensory overload, but it is certainly not especially likely - not any more than any other trigger.

On the other hand, I would say that migraines, whatever the cause, can definitely trigger sensory overload. I’m normally very hypersensitive to most things, but during a migraine, I can’t even tolerate the slightest amount of light or sound. It becomes orders of magnitude more painful and nearly impossible to tolerate.

I hope this helps!

This is one of those topics that hasn’t really been researched, as far as I can tell, so I’ll be sticking to my usual method of speaking for myself and inviting autistic followers to add their thoughts. I can in no way claim to speak for everyone, but am happy to share my perspective.

First off, let me explain how a special interest works for me with a simple metaphor: falling in love. When I first come across a new special interest, its eyes sparkle at me from across the room. I get a tiny taste of it, a fragment of information or a glimpse of a picture, and a spark flies, and a fuse lights, and a bomb of euphoria goes off in my head. This thing, this thing right here, is quite clearly the most amazing, important thing I’ve ever come across. This thing is frigging incredible, the best thing that’s ever happened, and the world needs to know.

I become obsessed. I gobble up information wherever I can find it. I learn everything there is to know as quickly as I possibly can. I become an expert on this thing in a remarkably short amount of time. This is LOVE, man. Well, more accurately, this is infatuation. Puppy love. That drug-like rush of chemicals in your brain when you feel you’ve found THE ONE. I talk about it constantly, much to the annoyance of those around me who just don’t quite understand why this thing, this one thing, is so amazingly great that I need to rant about it to the exclusion of everything else in the world. (Especially since they’ve heard it all before.) Just talking about it gives me a rush of euphoria. Sometimes I can see that those around me aren’t interested, but I just can’t stop. The words pour out of me, the excitement radiates off of me, I can’t be ignored, can’t be interrupted. This is like nothing that has ever happened before! Surely, if I can explain it well enough, everyone else will see, too, right? Right?

If you’ve never been in this kind of love, you might not have learned this lesson yet, but here it comes, folks: that kind of love doesn’t last. That euphoric high that results when your brain decides to take a bath in happy chemicals - it’s just physically impossible to sustain it. Eventually, the high, the firey passion, wears off. For me, this usually takes about a year. I’ve read and watched and learned everything I can about this thing. It’s been the center point of my life for a long time, the thing that gets me out of bed in the morning. And one day, suddenly, it just… doesn’t hold the same appeal. It’s not that I don’t love it anymore! I will always love it. But the love changes. It becomes the old, familiar love that comes with time. You don’t get that high from being together anymore, but that doesn’t mean you don’t enjoy each other’s company. You no longer try to persuade the world that this one is the one, is the best thing ever. You no longer need to. This love just settles into the back of your mind, always there, always a comfort, always ready to give you a hug when you need it.

The expertise I’ve gained from all my intensive research, that stays. I will always know just about all there is to know about that thing (at least, all there was to know when I was researching it). I’ll always be able to call that knowledge to mind later on, when it’s useful. And I’ve developed quite the reputation for being a “know-it-all”. I always seem to have some random, obscure fact right on the tip of my tongue, and it’s usually debunking some common misconception that my friends would just as soon keep on having rather than feeling like they’re constantly under attack by that one girl who just HAS to know EVERYTHING.

But it doesn’t feel that way for me. A key difference I’ve noted in communication between autistic and allistic people, and the source of a large percentage of our miscommunications in life, is this: allistic people communicate to bond emotionally and to establish and display power and dominance or submission. Autistic people communicate to share information. When I correct someone, it’s because I know that if I was wrong, I would want to be given the correct information, so I could stop being wrong. But when an allistic person is corrected like that, they take it as an attack on their status, a display of power, and a denial of their feelings. The “golden rule” doesn’t always work. It’s a constant problem.

In any case, I have always been described as someone obsessive. Someone who finds one thing (although it’s often two, three, even four things at a time) and just obsessively learns everything about it and won’t shut up about it for months and months on end. And that really does seem to be true, in a sense. I have very extreme levels of interest. Either something is amazing and I need to know everything about it, or it just doesn’t catch my interest at all. There isn’t much in between.

On the other hand, due to all the many special interests I’ve had over my more than three decades of life, I have built up quite a broad range of interests. I never lost any of them. All of those things still interest me now, and when someone brings one of them up in conversation, I still get a spark of the old obsessiveness deep inside. As a result, I now seem to have a wide range of interests, some of which I’m overtly obsessive about, and others which I keep on file, ready to pull out whenever they’re needed. When I was young, that probably wasn’t the case. It’s likely that I may have been viewed as somewhat one-dimensional as a child, obsessed with just a few things and completely uncaring about everything else. (And when my parents, trying to make me act “normal”, tried separating me from my special interests, the pain was as crushing as being forced to leave your True Love because the rest of the world doesn’t want you to be together - and only made my obsession stronger.)

What I want you to understand is that I don’t see that as a negative thing in any way. An allistic person might see that narrow range of interests and think “oh the poor thing, it’s like she lives in a tiny world and is missing so much of life!” But from my perspective, it’s allistic people who are missing out. Allistic people never seem particularly interested in anything, not by my standards. From where I’m standing, it looks like allistics just drift through life, dabbling in a little of everything but never mastering anything, never finding any real interest, never getting any real, intense joy out of any of their hobbies. An allistic person might say to me, “Yeah, I do a little crocheting, but I’m not really that into it.” And in my mind, I’ll think… then why do it at all? How horribly unsatisfying must it be to go through your entire life, never falling in love with anything you do? Never feeling that euphoria that I get to experience over and over again every time I find a new interest?

Autistic and allistic brains are specialized differently. Allistic brains are best at navigating social rules and structures and internalizing broad strokes and large categories. They look at a table for the first time and think: “That’s a table.” And that’s pretty much as far as they go. They might spend a few seconds to note the material or color or overall condition of the table, but that’s it. 

Autistic brains are specialized in details. It means we have more information to process, all those details without any mechanism for discarding the ones that aren’t important, but it also means we get to see everything about something. I see that new table and I can get lost in tracing the patterns of the grain for hours on end. Sure, it takes me longer, but I get a lot more out of it, and I get a joy from that which allistic people just don’t seem to get.

It’s similar with our interests. Allistics have broad interests, dipping their toe into the shallow ends of a thousand different pools but never really diving in. Autistics have narrow but intense interests. We absorb every detail, and in doing so experience an intense and wonderful euphoria. Honestly, sometimes I feel sorry for all the allistic people in the world who never get to experience that. The poor things… ;)

-Mod Aira

For me, I can have both special interests and normal-level interests. Just because I have stuff that I really really love and am passionate about doesn’t mean I can’t also have other interests, that I’m not quite as passionate about but that I like to dabble in from times to times or as a part of my routine. I do not feel however the urge or will to research them in more depth. There is joy that I can derive from it, but there is not the same “drive” to pursue it. I’d say that’s the main difference between a regular interest and what we call a special interest: a drive to learn about it, talk about it, read about it, build projects about it, engage with it, that is much stronger. So one person can have one or a few special interests, but I’d say it’s not always to the exclusion of everything else.

I think the intensity of special interests, their “obsessiveness” and whether or not the person likes to engage with other subjects that their special interests depends a lot from one person to the next. My special interests sound less intense than what Aira is describing, and I may have more varied non-special interests. So really I’d say this is something that depends a lot from one person to the next.

I also want to add that just because someone has a narrow range of interests doesn’t mean they’re one-dimensional: I’ve seen a special interest described as a lense through which you understand the world. The world is large, and even if you have only one such “lense”, that’s a lot of things to discover with that unique point of view.

Being told to stop infodumping is never a pleasant thing. Getting all that information out just feels so good, like stimming with words, and we can feel a compulsion to get out every detail, and feel unfinished or incomplete if interrupted. However, most of us know that it’s not pleasant or interesting for those around us sometimes, and are used to being asked to stop. How this works will depend on the relationship between the people. Someone who knows she is autistic and can’t help wanting to infodump might be more patient and let her go on for a long time, maybe not even really listening, just letting her talk and letting her know it’s okay to do so, which will help her a great deal. People she doesn’t know are more likely to not understand why she won’t shut up and be more direct and less understanding, rolling their eyes and saying “alright, alright, enough already!” or even “shut up!” or “take a hint! no one cares!” This reaction is, frankly, understandable, but still frustrating for the autistic character, who isn’t doing anything wrong and needs this release.

In a situation where either the understanding listeners’ patience is all used up, or they have something else they need to do or talk about, they can find polite ways to ask her to stop. It might not be easy! Even when we see that others don’t want to listen anymore, some of us can still feel compelled to keep going until we get it all out. Sort of like being asked to stop crying or laughing when you’re not done yet. But if she can see that they mean well and really just can’t continue listening, she can cut herself off and save it for later, or talk to an imaginary friend, or herself, or find someone else who’s more interested in listening. As long as the people are polite and understanding, explain that they’re sorry to interrupt her but they really are running out of time for this other thing, and can we finish this conversation a bit later?, the autistic character can do her best to accommodate them (autistic people do spend quite a lot of our energy accommodating allistic people, after all). But she will have that “unfinished” feeling which she will have to deal with somehow.

It’s not necessarily rude to inform someone that those around them don’t share their interest, and to ask them to compromise. Especially if people are willing to listen at least sometimes - even though they’re not interested at all - that shows an understanding and compassion. If this is something that happens often, they can work out a system where the autistic person will have infodumping time, but try not to get into that topic during other times. Or perhaps even more helpful is to help them find someone who *is* interested in that topic, an audience that will be really pleased to hear all she has to say. The internet is great for this. You can talk to people all over the world, find clubs in your local area, etc.

It should also be noted that although we sometimes have a compulsion to infodump no matter what, we greatly prefer sharing with people who are actually interested, or, best of all, inspiring interest in those around us. Sometimes I just can’t stop even though I can see that others aren’t interested, but it doesn’t feel so nice. The best situation is when I can share this information with someone and see them take an interest for the first time - their eyes light up as they discover this truly interesting thing they didn’t know about before. If someone shows no interest whatsoever, and every time I bring up that topic, I see them preparing to tolerate it rather than listening interestedly, I will probably stop bringing up that topic with them eventually. If I can’t find any topic of conversation that we both find interesting, I may even start to avoid them altogether and try to find someone else to talk to who shares my interest. Failing that, I may spend more time alone, share this information with interested people online, etc. As a result, I have only a few very close friends and don’t spend a lot of time being social with real-life people, which has its pros and cons which will probably have to wait for another post. Just keep in mind that if your character is consistently asked to stop talking about something, she probably will stop bringing it up, or even stop talking altogether out of a feeling that no one values what she says and she has no common ground with the others.

I hope this helps. Happy writing!

Someone who is repressing their stims will often have some noticeable effects from doing so. Going stiff or shallow breathing is a possibility. It’s also possible that they will have to concentrate a lot to not stim (since the stimming is a natural thing they may not even notice themselves doing). That attention has to be taken from somewhere. Since many autistic people have difficulty processing spoken language, for example, the character might have to choose between focusing on listening to the boss or focusing on not stimming. By holding in the stims, they may miss some or all of what the boss says, or fail to adhere to the allistic conversation scripts they’ve learned, or give up on eye contact altogether, all of which may be seen by the boss as signs of a poor worker (when all the person really needs in order to do their job and communicate well is to be allowed to stim). 

If the character knows they’re autistic, they have the right to request accommodations. If they have a professional diagnosis and live in the US, the Americans with Disabilities act entitles them to accommodations, and the employer cannot discriminate against them (as in, fire them rather than give them their accommodations, etc.). Legally, they are protected and can request, for example, that they are permitted to stim, that they work in an area with fewer distractions, have any flickering lights fixed immediately, etc. However, this is easier said than done, and it’s difficult to prove someone is being discriminated against. For example, a boss who doesn’t care or is intolerant may secretly give them the worst jobs or pay them less than other workers (which most American employees wouldn’t know about since workers are told to keep their salary confidential, even though this is illegal). And if the character doesn’t want to “come out” as autistic or doesn’t have a professional diagnosis to back them up, they unfortunately may not be given the accommodations they need. And in the US, when not protected by something like the Americans with Disabilities Act, employees can often be fired on a whim from the boss (though most other countries I’m familiar with have much better worker protection laws and employees cannot be fired without good reason). So the setting of your story is important - it’s a good idea to research the laws surrounding these issues in the country where the story takes place, see what the character’s rights are, then decide whether the character is actually aware of those rights (most people are actually not) and wants to take advantage of any protections they have.

I hope this is helpful. Happy writing!