Category Archives: opinion

Income does not equal Worth

dollar sign image, creative commons, from Rareclass

I want to talk a little bit about a thing that I really, truly struggle with. I live in the US, which is an extremely capitalistic society. Here in the US, your value is strongly equated to your income, in some sectors to the point that your income determines your morality (rich people are good regardless of what they do; poor people are bad regardless of what they do). Disability is often seen as a moral failing, and being too disabled to work is seen as either shameful or lazy.

I have been very open on my blog about the fact that I do not have a job or do work for an income, as well as the fact that any time I try to do so I end up profoundly Not Ok. What I am less open about is the fact that I feel incredibly deep shame around that fact. Nor has everyone around me been understanding of my difficulties in work. I’ve had second wave feminists tell me (back when I was presenting as a woman) that I should get a job Because Feminism with clearly no understanding of why I wasn’t working. I once had a therapist spend months trying to push me to get a job until she saw me being Not Ok and changed her mind.

Now, intellectually I don’t at all think that income means worth. I believe that everyone has worth, just by existing. I believe that everyone deserves food to eat, access to healthcare, and a reliable place to sleep and bathe regardless of who they are or how much money they have access to. I believe the role of society is to support everyone. I believe that there are many ways to contribute to society that don’t necessarily involve generating an income. In fact, given that “generating an income” relies on producing something that other people are willing to pay for, I’d say that there are MANY ways to help and contribute to society that don’t involve getting paid.

Yet despite these beliefs of mine, I have strongly internalized the idea that worth comes from generating income, which means that since I don’t generate income I must not have worth. I am constantly bombarded by the message that I need to work for money to have value as a human being – both from society at large and from people I am or have been close to (not everyone I’ve been close to, but definitely some of them). I frequently wonder what kind of income work I could do that wouldn’t leave me Not Ok. Something like working all by myself in some dusty basement doing archival work or something (ok, that one is less a practical idea and more a fantasy. ANYWAY). 

I wish I had strong words of wisdom I could put out there for other people who feel like I do, but I don’t. All I have is 1) the firm belief that we all deserve to live, and thus deserve the things needed to live, regardless of our ability to produce an income, and 2) an internalized belief that because I do not generate an income I have less value than the people around me. It’s rough.

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If a diagnosis matters to you, then it matters

Image by Nick Youngson creative commons license

In the autism spaces I’m in, a particular scenario comes up pretty often. It goes roughly like this: A person, I’ll use the name Finley, is an adult who believes they may be autistic. Finley has looked into as much as they can – they’ve checked out the diagnostic criteria, compared it to their own behaviors and history, and something is clicking. It looks like autism might explain parts of themself that they have struggled with their whole life. Finley isn’t super comfortable with self-diagnosis and really wants to know for sure, which means going out and finding someone to go through an official diagnostic process. Then, the people around Finley try to stop them. The people say it’s pointless, there’s no use, Finley is an adult now so why bother, it’s an expense that has no purpose. Finley ends up in an autism space to ask about it. Is it worth getting a diagnosis? Are all those people right? Should Finley just give up on this idea of knowing for sure?

So to be totally, perfectly clear – Finley, if getting a diagnosis matters to you, then it matters. Period, full stop. You shouldn’t have to justify it to anyone, because the fact that it matters to you is ultimately all that matters.

That said, if you’re in the US, you’re probably going to have to pay for it yourself and it isn’t necessarily cheap to do. If you need financial help to access diagnosis, the sad reality is that you will probably need to find a way to justify your need to other people. You shouldn’t have to, I think it’s wrong, but this is the world we live in. So how to do that with people who really don’t see the point?

This can honestly be tough. When I first sought an official diagnosis I asked my dad if he would help me pay for it. To be clear – I didn’t ask him to pay for the whole thing, only if he would be willing to contribute some amount. His response was to compare it to an employee asking their boss for a loan for a job project, and demanded I justify it in those terms. I’ll be honest – I was pretty shocked by that and did not actually manage to comply with his demand. He did not help with the expense of diagnosis. Which is to say – I know extremely well that sometimes the people who are supposed to support us just don’t or won’t. 

So how DO you justify it to people who don’t see the point? Well, part of this depends on whether or not they are acting in good faith. If they don’t want to see the point, nothing you say will convince them. That is just an unfortunate truth. But if they genuinely WANT to understand, there are a few ways to approach this.

If you are in a situation where you need accommodations in your job or wherever else, an official diagnosis will really help you there. If they try to come back with the claim that you didn’t need accommodations before so why do you now, well… let me make an assumption here. My assumption is that you DID need those accommodations the whole time, and the fact that you weren’t able to get them has led to burnout, meltdowns, shutdowns, and other unpleasantness. You’ve reached a point where you’re running on fumes, and something needs to change. An official diagnosis will help you get the changes you need.

The comfort of certainty. If you’re like me, not being able to point to a diagnosis to say FOR SURE that you’re autistic just doesn’t feel good enough. Like, ok, I put literal years of time into looking into it and reading and looking at a variety of diagnostic criteria and I reached a point where I was able to be pretty expletive certain, but I just wasn’t comfortable with that. I wanted to know for sure. I’m fortunate enough that I had other people in my life who understood and supported that, even if my family didn’t.

To be clear – I’m not at all trying to say that official diagnosis should matter to everyone. Only that if it matters to YOU, that’s valid and real. I respect that and so should everyone else. It’s unfortunate that we live in a society where official diagnosis is often unattainable without social support. I’m sorry if your social support is lacking and you’re surrounded by people who are dismissive of you. I believe you, and it matters.

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No Shame in Bailing

I imagine many of you will recognize the title of this post as being from Steven Universe. I want to talk some about how this line hit me and what it means to me now.

When I first saw the episode when this line showed up (S:1 E:28 “Space Race”), the line itself kind of shocked me. My initial reaction was basically “what? No way!” because it is so very very different from basically anything I had ever heard before then.

For a little bit of context for those who haven’t seen it – in the episode, Steven (a child) is about to try riding a little hand-made cart down a hill, and his father (Greg) takes him aside for a few fatherly words of wisdom. Those words of wisdom concluded with (essentially, I might not be remembering this exactly) “and remember Steven, there’s no shame in bailing.”

Whaaaaat?

Since when does a kid’s show tell a child that it’s ok to quit? Don’t we tell children to always see things through? We say “winners never quit and quitters never win!” We say “don’t start something you can’t finish!” This thing, about it being ok to try something you aren’t sure of and just quit if it isn’t working was quite literally brand new to me. Needless to say, I was extremely sure that Greg was saying something bad and he was going to be proven wrong.

So imagine my surprise when shortly afterwards, bailing turns out to be exactly the correct thing to do. Not once, but TWICE! In an 11 minute episode? What is happening? How can this possibly be the moral of the story?

It’s been over six years since that episode aired and being the overly-analytical person that I am, I have spent a fair amount of those six years thinking about that episode and that line in particular. I am now firmly of the opinion that Greg is absolutely correct. There is no shame in bailing.

Here’s the thing – I have anxiety. I have sensory issues. I struggle in group social situations, because group social dynamics continue to elude me. Giving myself permission to bail has opened up so many opportunities for me to try new things that I’m not sure about. Knowing that I don’t have to see something through means that I can try something that might be great, but also might be too loud or too complex or just too much for me. It’s ok for me to take risks, because it’s ok if they don’t work out. I don’t have to risk harming myself by trying to force myself to continue to do something that’s hurting me, because I give myself permission to bail. 

This also means it’s easier for me to make an honest effort to really, genuinely try something new and scary. When I believed I had to see everything through, I didn’t try all that many new things. Because what if it didn’t work out? WHAT THEN? Well, now the answer is that I bail. And that’s ok. 

I really want this to become a bigger thing in our society. I want our children to be taught that it’s ok to quit – it’s awesome to try new things; that’s how we find new things we love, but not everything we try is going to be good for us. And sometimes we won’t learn that until after we try it. And THAT’S OK. 

Go ahead and try a new thing. Go ahead and take a risk. And if exiting turns out to be what you need to do to stay safe, then exit without shame.

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Let’s talk about spectrums

Let’s talk spectrums (no, not the book I’m published in, yes I am shamelessly plugging myself here). Autism is commonly referred to as a spectrum. So are many other aspects of humanity – gender is a spectrum, various mental illnesses are spectrums, lots of things are spectrums.

Now, the point about the autism spectrum not being a line is nothing new – I’m just adding my voice to the chorus here. I only want to add that spectrums in general are not lines. Looking at spectrums as lines is limiting us and giving some people some very incorrect ideas about what “spectrum” means.

Story time! Once, someone tried to explain to me why the phrase “everyone is a little bit autistic” is actually totally correct. See, autism is a spectrum, right? And spectrums are lines, right? And the autism spectrum goes from “not at all autistic” on one end to “all the way autistic” on the other end, right? So really, EVERYONE is on that line, RIGHT?

NO. WRONG. HOLY MOLY ABSOLUTELY NOT.

Ok, for the purposes of this post I am going to be using the color spectrum as an analogy, because I think it really works well.

So when most people think “spectrum” they seem to think something like this:

Image from wikipedia

You know, a basic line of color. And sure, this is a spectrum, but it really could be so much more.

I’ve actually seen some people just stop here and try to not use “spectrum” to describe things, because of how many people think that a spectrum is just this linear thing. I sympathize with that perspective a great deal, but I am still on the side of pushing back against the idea and trying to widen the idea of what a spectrum really is.

Of course, even here that person’s line of thought that I mentioned above falls apart. Because the color spectrum doesn’t go from “a little bit of color” to “a lot of color.” It goes through the range of colors that we can see. The logic! It is flawed!

Anyway. Let’s go back to colors, shall we? The color spectrum does not actually have to be displayed as a line. There are, in fact, other ways to show it that give us a broader range than the simple line.

Image from Wikipedia

Here we see a 2d color space, including both color range and saturation range. It’s a spectrum! Being more than a line!

BUT WAIT, THERE’S MORE.

We also have the RGB Colorspace Atlas books, co-designed by Daniel E. Kelm and Tauba Auerbach. They are 8x8x8 books going through the color spectrum, each page itself a small spectrum. The end result – a color cube. 3d color. A spectrum with depth.

Source

Now, color is amazing. Our eyes are amazing. But in the end, we’re talking about wavelengths of light interacting with our retinas. Yet we still need to move beyond the idea that a spectrum is a line in order to appreciate the range of color we experience.

How much more true is that when the spectrums we’re talking about describe PEOPLE? We deserve better than that – both as people who are on various spectrums and people who are thinking in terms of spectrums. Spectrums are incredible, just in general. The spectrum of human experience is vast and in no way linear. Spectrums in general are not linear. Seriously, let’s just ditch the idea of linear spectrums just in general and understand that when we see a spectrum in a linear way, we are seeing a drastically reduced version of it. One that loses all the richness and depth that could – and should – be there.

A side note about physics: Ok, I do understand that specifically in the science of physics, “spectrum” is a specific term that IS, in fact, linear. It is intended to be reductive in that it is also understood that a spectrum is showing the range of one specific thing. Important to note – there is no single scale or range to measure that defines autism – there are many facets and factors involved. We can either stop calling autism a spectrum entirely, or allow our concept of spectrums to grow. So too in color theory, where people refer to hue, lightness, and saturation – all of which could be shown on their own, individual, linear spectrum. Put them all together into the more colloquial idea of spectrum, and you get a colorcube. 

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In Defense of Small Talk

Full honesty here – I might have posted about small talk in the past. I legitimately do not remember, and I just don’t really feel like digging through all my old posts to see if I did. It was a long time ago, and I wrote a whole lot of posts. In any case, my thoughts on small talk have evolved in the past few years, though my overall opinion remains the same.

Just to get straight to the point here: SMALL TALK IS GOOD.

Ok, now for more blather. Small talk gets a lot of hate. Being autistic and introverted and socially anxious, I tend to be in circles that really dislike small talk. People will say it’s pointless or meaningless, I regularly see things about people throwing “no small talk” parties, there’s that “find the others” quotation by Timothy Leary that I honestly find a little unsettling, people are making declarations that they are done with small talk forever – the point I’m getting at here is the consensus seems to be that small talk is attempting to fill a void that isn’t actually there* instead of serving an actual function.

Here’s the thing, though. Small talk DOES serve a function. Now, I’m not going to try to say it never gets overused because I don’t actually know if it gets overused or not. Maybe it is, maybe it isn’t, but even if it is overused, that doesn’t mean that small talk itself is the problem. Small talk is necessary.

Let’s start with the “hi, how are you” ritual that I KNOW I’ve talked about at some point in the past. Is the cashier at the grocery store genuinely interested in how I am when they say “hi, how are you?” No, no they are not. Luckily for all of us, that’s not the point of the ritual! And yes, I am calling it a ritual because I genuinely see it as a ritualized greeting in our society. (and by “our” I mean that I live on the east coast of the US so this is my normal) (I’ve lived in several other regions of the US as well and the “hi how are you” ritual has always been a thing, but it might not be a thing in other countries, I don’t know) (ok, back to the point) ANYWAY. So this is about how the “hi, how are you” script goes:

Person 1: Hi, how are you?

Person 2: Oh, I’m fine, how are you?

Person 1: I am also fine, thank you.

Aaaaaaand that’s about it. Here is what’s actually being said, though:

Person 1: Hi, I acknowledge you as a person.

Person 2: Thank you! I acknowledge you as a person as well.

Person 1: Thank you! We are both people!

You may notice that this ritual is almost entirely done between people who are strangers or are otherwise poorly connected. If I say “hi, how are you” to a close friend, I genuinely want to know how they are. If I say it to a cashier, it’s because I’m using a social ritual to make it easier for us to interact for that minute or so that we need to talk to each other.

Beyond the aspect of social rituals, small talk serves another vital purpose – finding similarities, and through similarities, connection. There’s a reason small talk almost always starts with the weather – it’s because as a rule, we can all AGREE on the weather. It’s a common starting point where people who know absolutely nothing about each other and might be wildly different can agree on something. Even if, say, one person loves rain and the other person hates rain, we can all agree that it IS raining, and possibly that the rain is inconvenient, and that wow, it’s so wet out there. We can all agree on that regardless of political beliefs, religious beliefs, whatever else. 

When it’s a brief interaction, that’s generally all there is. A tiny, short connection with a person we had a tiny, brief time with. And that’s fine. At other times, though, this can continue. Maybe we’re talking to a new person at a social event. We have acknowledged each other as people (“Hi, how are you?”), we established that we can at least agree on one thing (there is weather outside!), now we gradually move into other topics.

Generally this is done step by step. One topic at a time, we can approach territory we’re less likely to agree on. One topic at a time, we find what we have in common. It let’s me find the Star Trek people who I can talk trek with, and the crafting people I can talk crafts with, and whatever other people I have things in common with, WITHOUT just starting a discussion about the moral implications of some specific Star Trek episode with everyone around me regardless of whether they’re interested in it or not. That is considered rude, particularly because we have established social rituals that exist to help us find other people who are like us. You know, like small talk.

I have spent years now injecting tiny bits of small talk into my micro-interactions, and the results have always been incredibly positive. Maybe I’ll compliment the cashier’s nails, or comment on how I walked to wherever I am in the rain and now I’m wet, or whatever. Something that’s pretty meaningless in the big picture, but as it turns out is incredibly meaningful in the small picture of day-to-day interactions with people.

As I type this I am made very aware of the fact that my skills here are going to be rusty because, well, I haven’t really gone anywhere other than the grocery store and doctor’s offices in a year. My social skills are getting way less practice than they used too. 

ANYWAY. In conclusion – please stop hating on small talk. Sure it can be annoying sometimes, but to be real – when I started realizing what it’s for I found myself significantly less annoyed by it. I already struggle to connect with people. Why in the world would I reject a tool that specifically exists to help us all connect with each other? 

No reason I can see.

* Oh no, now part of my brain is off thinking about how voids are literally defined by the absence of stuff, so can a void ever really be said to “exist” in a meaningful way and wow my brain just goes off in its own direction sometimes.

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Pushback Against Autistic Headcanons

The root of this post is a reddit thread I came across a wee bit ago in which our poster talks about how they started an Instagram about fictional characters they headcanon as autistic, and the strong pushback they got against it. They were wondering why people were reacting so strongly against, apparently, the very idea of seeing fictional characters as autistic if they weren’t explicitly stated to be so by the writers. 

And OOH do I have OPINIONS on this matter. I can’t say exactly why THIS pushback happened in THIS instance because I am not psychic, but I do know why SOME pushback happens in SOME instances. So let’s get started.

First of all, let’s talk about headcanoning. A “headcanon” is a personal belief someone has about a fictional character or story that has not been actually stated IN the story, but makes sense to the person who has the headcanon. It’s pretty common for autistic people to headcanon various fictional characters as autistic because, let’s face it, autism representation is kinda sorta completely terrible. There is not a lot of autism representation in fiction in the first place, and what little there is leaves a lot to be desired. Autistic people are generally either objects of pity, quirky geniuses, or simply displayed for comedy. We hardly ever just get to be, you know, people. 

This is hardly an uncommon thing in minority groups, of course. Nor is it uncommon in those minority groups for people to headcanon a fictional character to be like them in some way – to fill in the gaps of representation, in order to see themselves when they otherwise wouldn’t. Personally, I’ve seen this a whole lot in queer people headcanoning characters as queer in some way – gay or bi or trans or something along those lines. Because representation is important.

Alright, back to autism representation. This is where it gets a little more ugly. The fact of the matter is that in real life, autistic people are rarely ever actually seen as people. We’re seen as objects. And as objects, we are very much NOT seen as having autonomy or the ability to speak for ourselves. For example, I’m sure we’ve all seen how it’s basically stated that if an autistic person can speak for themselves in some way, we are not autistic enough to “count” (honestly, what a terrible thing to say. It astonishes me how horrible people can be sometimes).

But it also means that to at least some people, when we headcanon a character as autistic, we are essentially saying that the character isn’t really a person. Which, yeah, if we were saying that it would truly be terrible. But we aren’t saying that. We’re saying that we see ourselves in that character. We identify with that character. We want to imagine that character is like us in a way that is meaningful to us. Which, to be clear, is not a conclusion we make carelessly, despite what some people think. 

And by “some people” I mean Benedict Cumberbatch (and others, but he’s always the one that comes to mine first for me). I don’t really want to dig a whole lot into what he said because quite frankly, I find it upsetting. So here is a link to a quick summation of this mess, and to summarize the summary – basically Benedict Cumberbatch thinks it’s “lazy” to headcanon people as autistic, and that imagining brilliant, successful characters as autistic “offers false hope” to autistic people, since apparently we cannot be brilliant or successful. And despite autistic people pushing back against that incredibly harmful (and cruel) narrative, it looks like there are people out there who agree with him.

Which brings us back to that reddit user’s Instagram, and the pushback they’re getting against seeing characters as autistic. It’s not at all surprising to me that they are getting this kind of pushback, but I do find it incredibly sad. Someone just wants to showcase characters that they think are like themself in some way, and people get incredibly angry about it. Because of course they do. Because instead of seeing us as people who are seeing aspects of ourselves in fictional characters, they see laziness or accusations of fictional characters being objects or whatever else. I hope that person continues their Instagram, because personally I am really into the idea. There are some fictional characters out there who I personally headcanon as autistic, because they seem like me in autism-specific ways. And you know what? IT’S OK THAT I DO THAT. 

PERIOD.

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Ranting on Autism Purely Defined as a Deficit

The image is kind of random, but I like capybaras, and two capybaras greeting each other just felt right. Because hi!

Hi! Starting with the elephant in the room – I’m trying to be back. Yes, it’s been some five years. Right now I’m just trying to get my brain thinking in blogging terms again. Turns out there are indeed some topics about which I have Things To Say. That said, I am very VERY interested in hearing about what you would like to see me talk about (or see anyone talk about). I can’t guarantee I’ll take every topic, but I really want to get ideas bouncing around in my head, and I really appreciate anyone who can help with that.

And now, on to the post itself.

I have so many thoughts on this particular matter, but in this instance let’s start with a study. (Disclaimer – I have read the abstract, but not the paper itself as reading full scientific papers tends to be a bit above my level) Here is a pubmed link to the abstract. To summarize the summary – some scientists did a study on information transfer between autistic people and neurotypical people. They did this by basically having different groups play a game of telephone with a story, and then seeing how much of the story remained intact by the end of it. They had chains of entirely autistic people, chains of entirely neurotypical people, and chains with a mix of autistic and neurotypical people.

The findings, which I imagine will not surprise a single autistic person, were that autistic people transfer information to other autistic people just as well as neurotypical (NT) people do. The problems happened in the groups that were mixed autistic/NT people. THAT was where information was most often lost. To me, this seems obvious, but I have definitely learned that this is NOT obvious to many NTs.

Now as we all know, autism is defined in terms of deficits, not differences. There are SO MANY aspects of this I could rant on, but I’m really going to try to focus on interpersonal interactions for this post. There is certainly plenty to say even on that.

This concept of autism as a deficit shows in how when autistic people are confused by something NTs do, it’s because we are deficient; we don’t understand. It shows in how when NTs are confused by something autistic people do, it’s because we are deficient; we are confusing. It shows in how often NTs are extremely aware of any tiny thing they do to accommodate autistic people, but are completely unaware of the measures autistic people take to accommodate NT society. Am I uncomfortable in a loud and chaotic environment? Do I struggle with sensory overload? I am deficient. Does an NT struggle and feel uncomfortable in an environment structured for me? I am still deficient. It is ALWAYS my deficiency.

So I like seeing a study like this, which actually does an excellent job highlighting the problems with this way of thinking. I think the best way I have to explain my thinking here is to tell you about some things people have told me in the past.

See, years ago I had NT friends, but only a few autistic friends. I knew I felt very comfortable with my autistic friends and we were able to communicate in a way that I could not with NTs, but it was pretty clear that my NT friends didn’t see that and weren’t aware of it. I would occasionally express that I thought it would be really nice to be in a relationship with an autistic person. From my perspective, it would give me intimacy with someone who thinks and functions much like I do. Someone who speaks the same language as me, metaphorically speaking.

Well, not everyone agreed with me on that. I was told, very bluntly, that that was a terrible idea, because I am just sooo rigid, and require sooo much flexibility from other people to accommodate my rigidity. That was honestly incredibly hurtful to hear, and I never quite knew how to respond to them. (it’s hard for me to get words to work in moments like that. It’s why I write) They were clearly extremely aware of any bending they did for me, and were extremely unaware of all the bending I did for them. And I did a lot of bending for them. But it seems that anything less than fully adapting myself to NT norms and standards counted as “rigidity” to them, and since I am unable to fully adapt to NT norms and standards, only NTs can deal with me. Yeah, I’m a little lost on their logic at this point.

In any case, I am in a relationship with an autistic person now, and it’s going exactly how I thought it would – MUCH EASIER than relationships with NTs. Our communication is better than my communication with NTs, we understand each other better and more easily than between myself and NTs. It aligns very well with what that study showed, which is no surprise to me at all, but might be a surprise to the people who told me that autistic people couldn’t possibly be in relationships with each other. 

I have no idea if those people even remember saying that to me. I’m still close to one of them, and I still remember their words and how much those words hurt. It’s satisfying to finally have science on my side, supporting what I’ve been trying to say all along.

We need new ways to look at autism. The deficiency-only model is flawed at its core, and it seems that science is finally starting to notice. I hope it continues. 

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Ramble on Stimming

This post might be a bit unfocused. We’ll see how this goes.

I’ve seen some disagreement in some of the autistic spaces I’m in around the idea of “stimming is communication.” Apparently some of us are really against that idea. It’s rather made me want to weigh in with my take on the matter.

And my take is – stimming is communication, in the same way that other forms of body language are communication. Some of the arguments against stimming being communication is that sometimes (or many times, or often) stimming is done without the intent to communicate. Apparently to some people, that means it’s not communication.

I disagree. Humans communicate all the time without necessarily putting intent behind it. Over on the neurotypical side, people generally agree that body language is communication. And sometimes NTs will put deliberate effort into their body language, so that it communicates something that they choose. However, many times body language just happens, without forethought explicit choices involved. And when that happens, it’s still communication. NTs like to talk about how up to 75% of communication is nonverbal – and they’re meaning that for themselves. Their own communication is dominated by nonverbal cues. Facial expressions, body language, tone, things like that.

I am firmly of the opinion that stimming is (among other things) body language. When an NT laughs, they are probably not thinking “I wish to communicate my amusement, so I am going to make this particular sound to convey it.” Laughing is simply a natural result of amusement. Same with stimming. Whether I’m flapping my hands because I’m excited or rocking because I’m overstimulated, they are natural results of my mental state. They are also expressions of my mental state, and, among the various things they do, they serve to communicate that to others.

When I say that stimming is communication, one of the things I mean is that NTs should learn to pay the same kind of attention to it that they do to other forms of body language. I am saying that all behavior is communication, and stimming counts too. I’m saying that stimming is another form of body language, and that is one of many many reasons why we should stop trying to stamp it out.

When I stim, I am generally not thinking about communication. I’m excited or happy or stressed or overstimulated or maybe just needing to rock. Frequently I’m alone, so communication doesn’t make any sense. However, I still say that stimming is communication, the same way that facial expressions are communication. I say this because intent or not, they can communicate information to others, if there are others around who know how to read it.

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Not a Cure

The cure vs. not cure battle seems to be continuing to rage on. Ages ago I made a post with my take after someone accused me of not needing any kind of help, since I am against being “cured.” It seems that to some people, it’s a binary. Either we’re just fine as we are and don’t need help or treatment, or we need to be cured. The reality is, of course, more nuanced, with different individuals needing different amounts and different types of help and treatment.

So, looking at the cure stuff, it seems that there is a pretty big disconnect between the broader autism community, and how some parents think of it. See, to autistic adults, most of us see autism as an identity. As a neurology. To get rid of the autism is to fundamentally change who we are.

I gather, though, that to some parents of autistic children, they see it differently. See, autism is diagnosed by behavior. While scientists are slowly researching how autistic brains are different from neurotypical brains, it’s still an area that we don’t really understand, and we are very very far away from using that kind of information in diagnosis. Behavior is all we have. So “having autism” is, in a sense, synonymous with “being diagnosable.” Of course, there are problems with that logic, and one of the big ones – the one I am wanting to talk about here – is how some people use it for their idea of “cure.”

Basically, for some parents, “curing” their child only means making them no longer diagnosable. And making them no longer diagnosable means making them get rid of the behavior used for diagnosis. And when I think about that, well, it’s quite distressing.

See, I could probably learn to stop stimming. But it would leave me constantly tense and uncomfortable, it would eliminate a huge part of my body language, and I would have to keep a fairly significant portion of my attention dedicated to preventing stimming. Sure, it would reduce how diagnosable I am, but it would not better my life in any way. Quite the opposite.

If there were enough external pressure, I could probably succumb to not showing my sensory issues. I could choke down food that makes me gag (well… maybe. The gagging can get pretty bad). I could sit in silent agony as clothing tags dug their way into my skin. I could learn to not flinch at painful lights and noises (which, actually I did learn that one a little. It’s not a skill I particularly enjoy, and I am working on getting rid of it).

I could take intensive social skills classes. Which, actually, wouldn’t necessarily be bad. My social skills are way behind other people in my age group, and this is very much an area where I need help. As I’m pretty sure I’ve written about before, my ability to handle parties or similar forms of group socialization is approximately nil. I just can’t do it. So teaching me to handle stuff like that would be good.

On the other hand, not all ways of teaching “social skills” are about bettering an autistic person’s ability to actually interact. Sometimes they are about hiding our weirdness. Things like forcing eye contact regardless of the pain involved. Or forcing us to touch people even if it makes us feel sick or panicked.

So if my childhood had included all that kind of “help,” and somehow I learned to cope with that stuff without more or less constant meltdowns, I might have stopped being diagnosable. But the thing is, I would still be autistic. I simply would have learned how to hide my autism. And it wouldn’t even be able to last long term. As life continues, as the challenges of life increase, it would take more and more effort to maintain the facade. My ability to do anything else would diminish more and more. Eventually, the house of cards would crumble. Inevitably.

Making the autism invisible does not get rid of it. All it does is make it so neurotypicals can happily pretend it isn’t there.

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Words matter to me

I want to talk a little about why I like labels so much. I mean, I’ve talked a lot about labels and their usefulness and whatnot, and I have my arguments for why labels are more helpful than harmful, but that’s not quite what I want to talk about today. This time, I want to be more personal. I want to talk about why I like them *for me.*

When I explore things like “am I aromantic?” I get people telling me that the words aren’t important and I should just live my life. I find that incredibly frustrating, because it is completely invalidating to how I process and deal with things. It actually seems a bit ironic because I usually get that kind of feedback from people who think in words, while I, the person who largely thinks in concepts and sensations, wants the words for labels and identities.

I’m not sure why it’s working that way. I would have thought that word-thinkers would be all about their words, since they use them to think, and my less-wordy self would be less interested in words. But it just doesn’t seem to work that way. I may not do my primary thinking in words, but I still LOVE WORDS SO MUCH. Maybe the fact that I often need to actively translate my thoughts into words to be able to communicate them to other people leads to me appreciating words to a rather extreme degree.

What I really want to say, though, is that having words for things helps me understand them. Being able to grab onto a word let’s me put down a signpost, so I can anchor my rather abstract thoughts into something concrete. I’m not always very good at bringing things together into coherent wholes, and words help me do that.

Ok, here’s an obvious example – “Aspergers.” Before I had that word, I was still myself. I was being who I was for my whole life – who else would I be? But there was a lot about myself that I did not understand, and my behaviors and challenges and difficulties I had often felt random and spread out and incoherent. Gaining a word let me take what was very chaotic for me and find an order and coherence to understanding what was going on. That was REALLY helpful.

This is what words and labels do for me. They don’t confine me, they help me understand what otherwise is often confusing.

To draw another analogy – I once heard that autistic people often do not see wholes very well or easily. We see pieces – all the pieces – and it can take a lot of work to bring those pieces into a whole that we can make sense out of. This is true for me, at least a little bit. How about some more examples? One obvious one, that I’ve written about before, is faces. I see faces in pieces rather than wholes. I am actually not capable of seeing a face as a whole, which can be problematic at times. As another example – ok, story time. I was visiting a friend’s house and she was showing me around. She brought me into one room without announcing what it was first. For a good 30 seconds, I looked around only seeing details – “dresser, dresser, shelf, door, bed, another door” until suddenly it clicked – “BEDROOM!” I had the word for the room, and suddenly all those details and bits and pieces came together into a coherent whole.

So for me, words matter. It’s the opposite of helpful when people try to tell me to not worry about the words, because if I am pursuing finding the right words for something, you can believe that there is a reason for it. Usually that I need to find a way to bring coherence to a number of disparate things that are difficult for me to manage until viewed as a whole.

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