Category Archives: opinion

I think I’m late to the party

Ok, so if you watch TV (particularly the show “Fringe”) or keep up with popular media you might already know this. I do not get cable TV or keep up with pop culture in pretty much any way, so sometimes things take a while to filter down to me. Also, in this case, it just took me a while in general.

Anyway! I’ve been watching Fringe. I find it very silly, but thoroughly enjoy the absurdity so it works for me.

WARNING: There will be spoilers within! So if you have not watched Fringe but you plan to at some point and you care about not reading spoilers, maybe don’t read past the cut. Everyone else, I want to share my excitement!

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We don’t need no conversation

A reader recently sent me a really great idea for a blog post regarding forming connections without conversation. I have so many thoughts about this that I’m not sure how to join together into a single blog post, but I’m going to do my best.

Much of this comes from the fact that allistic people really do seem to rely so heavily on conversation as a means to connect to people. It’s often simply a default assumption that we will all find conversation as easy as they do and that highly interactive social connection is simply the best way to socialize and spend time with other people.

So first of all, let’s talk about conversation. It isn’t nearly as simple as just knowing words, knowing how to speak, or being able to make sentences. Oh no, it really isn’t. I mean, I know lots of people seem to think that conversation just naturally follows being able to speak, and we put all sorts of effort into teaching children how to talk and just assume they’ll figure out conversing on their own. So let’s just look a bit at that, shall we?

Conversation involves lots (and lots and lots) of real-time processing. Processing the words people say, trying to figure out if anything may have been behind the words and if so, what that was, processing tone and facial expression and posture and body language and everything else that goes with conversations. While conversing I honestly find it rather unpleasant that we are expected to do all of that, just given how hard it can be for me to process visual information and auditory information at the same time. Even purely text-based conversations, when done in real-time, can be challenging with all the rapid processing that is necessary. Now, I personally do enjoy conversing, don’t get me wrong, but I do think that there needs to be more general knowledge out there about just how tricky conversations can be.

While I find conversations sometimes tricky and can only do them within certain limitations, other people find them nearly or entirely impossible. However, difficulty in conversation does not mean that we have no need for human connection. I sometimes see people claim that autistic people do not need or desire human connection, or that said desire is what separates autism from Aspergers and honestly, I increasingly find that a load of twaddle. The more I read books from the perspective of autistic people, the more I read blogs like A Diary of a Mom, the more I believe that yes, autistic people totally want connection too. I know I certainly do. However, we find it difficult. Allistic people want us to interact they way they interact, to look the way they look, to be the way they are, and that’s a very difficult and unreasonable thing to ask of us. So many people just don’t see the need to find a shared language to allow for connection, and when they think in terms of assisting us, it’s just ways to try to make us like them rather than trying to meet in the middle. This is bothersome to me, in so many ways.

BUT, this post is supposed to be about connecting to others without needing to rely on conversation. As a brief note staying within the realm of conversation for a bit – even just allowing for more time to process (potentially LOTS of time to process for some of us) in silence is huge. Don’t try to fill up space with words, don’t bombard us with more and more words if we aren’t answering right away. Don’t try to force us to do everything as rapidly as you do. Allow for time to process what you said, time to think about our response, time to translate that into words that we hope will make sense to you, and time to get those words out our mouths. That might take a while. It might not feel like a conversation anymore. That’s ok – it’s communicating and connecting. Importantly, it’s connecting with who we are rather than who you want us to be, and that is incredibly important.

Imagine if I tried to force my way of conversing onto everyone who talked to me. You may not look at me when you speak to me. You must outright say what you would otherwise rely on body language to convey. You must wait for a very long period of time before you answer a question or reply to me. No one would take that well! Yet the inverse is demanded from us All. The. Time.

Anyway. I really must get back to the topic at hand here. One of my favorite ways to connect to people is something I’ve talked about before – Parallel Play. Allistic people often demand, or at least prefer, conversation happen with it, but that is actually not at all necessary. There is also the related associative play – where we are doing similar things and interacting in some way, such as sharing materials. I find that allistic people seem to rank interactions as better or worse depending on how much it forces us to closely interact with the people we are with. Cooperative play is seen as “better” than associative play, which is better than parallel play, which is better than solitary play. Only maybe these are simply different, rather than better or worse. Maybe they are all entirely valid, and maybe a parallel play connection is actually just as real as a cooperative play connection. (hint: I don’t actually mean “maybe” in the previous sentence. They really are just as real and valid as each other)

Possum, the individual who originally proposed this topic, also posted a comment to my Parallel Play post describing just such a non-conversational connection she experienced once. With her permission, I am sharing it here:

One of the high points of my life socially was casually dropping by an acquaintance’s porch one summer longer ago than I’m going to admit to. She was in the middle of some woodworking project. As a woman with NVLD as well as Aspergers (both undiagnosed at the time), I couldn’t help a lot. We just “be”ed there together in companionable silence, me handing her the tools she needed. I considered that moment in time magic and was never able to replicate it, but the way you just articulated it and normalized it gives me what I need to create more of that in my life (in conjunction with an awesome therapist).

All things considered, I actually suspect this was a form of cooperative play (yes, I am using the word “play” here very broadly), just given the cooperative nature of what they were doing. Yet it was done in “companionable silence” (what a fantastic phrase that is!); it was interaction and connection done without needing to fill the space between each other with words and sounds that, for some of us, can actually just create more distance. See, when I talk about “filling space with words,” that’s actually what it feels like for me. Like words take up space and if you put a whole lot of them out there in a short period of time, they push on me, and they can actually push me away from you because there are just so many. Instead of connecting us, they’re just this cloud of bugs, separating us.

Autistic people need meaningful connection as well. It’s just that we can’t always do it on allistic terms, and all too often I see autistic people speak of simply giving up due to the extreme difficulty of connecting in a world that is all too hostile to autism. So, allistic people, please respect silent connection, and please allow us that as well. We work so hard to interact with you on your terms; maybe you could interact with us on our terms as well. Let’s find ways to create connections based on companionable silences; on long, thoughtful pauses; on closeness that does not need constant verbal validation.

That would be awesome.

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Common Sense

A while back someone hit me with the “common sense” hammer and it inspired me to write a post about that phrase. That icky, horrid, club of a phrase.

Ok, so I just called it a hammer, and then I called it a club. This is because it seems to be one of those things (kinda like “trust” which is a rant unto itself) that exists more so that people can wield it as a weapon than because it has much in the way of merit on it’s own terms. The problem is that common sense has no consensus. Instead, it just seems to be any given individual’s set of assumptions that they think everyone else should agree with.

In many of my formative years “common sense” was the reason given for not explaining something to me and then punishing me for not knowing it. See, I was supposed to know the thing, because the thing is *common sense* donchaknow. So that made it my fault for not knowing.

I also get it – I still get it – in disagreements. A person will declare their view “common sense” and use that as a way to denounce my view without actually needing to address anything I say.

So when you add in things like how I view the world in a rather substantially different way from most people, and I am not exactly good at inferring information that hasn’t been stated, this “common sense” business gets all kinds of messy. I’ve noticed that I’ve started to have an immediate defensive reaction any time someone says that phrase. I view it as inherently dangerous, and little more than a weapon. My assumptions are different from yours. Your assumptions are different from some other person’s. Maybe that’s ok and we’d all be better off examining our assumptions and communicating our intent rather than relying on other people sharing our own concept of common sense.

Sometimes I see people talking about how common sense is becoming increasingly rare. Actually, I think I’ve heard people say that for pretty much my whole life. People who are older than me – can you remember a time when that wasn’t said? It just seems to be one of those things, like “kids today,” that people always say. Regardless, I think that’s another example of differing assumptions. Maybe “common sense” isn’t being lost, maybe it’s just that the broad assumptions people carry around with them are changing. And maybe, just maybe, that’s not a bad thing.

Personally, I want to dump the phrase “common sense.” Do we really need it anymore? I don’t think so.

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“In their own world”

People on the autism spectrum are often described as being “in their own world.” As far as I can tell, it’s quite common and more or less accepted without much, or any, question. I’ll be honest – I find this phrase (and various connotations I find connected with the phrase) really annoying. It leaves me twitchy.

Of course, there are times when it is the best phrase to describe me. I can, and do, sometimes wander off in my own head and am completely disconnected from everything around me. At those times I could certainly be said to be in my own world and I would not deny it. However, the phrase seems to be used for much, much more than that.

In this blog post the author mentioned an autistic man he saw in a record store. The man was dancing and singing to himself at a listening station and, I guess, not really paying attention to anything else around him, so the blogger referred to him as being in his own world.

This is where I start to get twitchy. He was connected to the music and actively emoting (which is a form of interacting with the world). How, exactly does that mean that he is in his own world? Increasingly I think it only means that “not connected to the world in the way I connect to the world.” Which is maybe not so good. Why is your way correct, but my way is “in my own world”?

Hypothetical situation! Let’s say I went to a party (I know, this is so unrealistic already). There is a stereo with music playing, but at the moment everyone is doing the social butterfly dance and standing around chatting in whatever way it is that people do. Since I don’t like that dance and couldn’t do it even if I wanted to, I am not participating. So instead maybe I go near the stereo and start dancing by myself, because fun! I gather this would mean that I am in my own world, because I am not in the same “world” that everyone else is in. I mean, we’re in the same environment. The same stuff is happening around us. We’re just interacting with different aspects.

Now let’s say that I wasn’t the only person dancing. Maybe lots of people are dancing! Now I’m not in my own world anymore, because I’m doing something with people. Which leads me to my next point – I have been starting to think that “in my own world” only means “not in the social world.” Which really seems to privilege socializing over, well, everything else. I can be interacting with the world – you know, the actual thing we live on, our surroundings, etc – but if I’m not doing it in various socially-approved ways, I must be in my own world.

Which is kind of related to some other things about interacting with the world in non-approved ways. Like, say, smelling books. From what I can tell, book lovers in general enjoy the smell of books (new book smell – so nice). However, since books are for reading, that seems to negate using books for anything else. Sometimes when I get a brand-new book, I’ll go into my room and just sit and smell it for a while. Not enjoy the smell while I’m reading – just smell. It’s an end unto itself. I do it privately because I fear that if someone saw me, they would tell me that I’m doing it wrong, and I need to stop. Because books are for reading, and not for smelling. To which I want to know – why can’t they be for both? I like to read. If I get a new book, it’s because I want to read it. But that doesn’t mean it’s wrong to spend some time focusing on other ways I can use my senses to interact with it. Books smell good, books feel good on my fingertips, sometimes I want to experience that.

Going back to “in their own world” – I do believe that when people say that, they are (generally) not being negative about it. I certainly see it used affectionately. The problem is that however affectionately it is said, I find it othering. I am in the same world you are, I just experience it differently.

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Self Awareness

I’ve been wanting to talk about self awareness for a while now, but it always feels so tricky to me. Like empathy, ‘self awareness’ is actually a pretty broad concept that seems to mean different things at different times.

First of all, just let me say, people need to stop saying that autistic people lack self awareness. When it is said without further context or clarification it’s downright harmful to us, so cut it out. In it’s most basic form, self awareness means nothing more than awareness of oneself. I know I’m here. Clearly, I am self aware.

Sometimes self awareness seems to mean social awareness. I really hate this definition. This is when we are supposed to be aware of what other people think of us – which is actually being aware of other people’s thoughts and feelings, not our own. If I have trouble knowing what other people think of me, it is not due to a lack of self awareness, thankyouverymuch. It would be a lack of awareness of other people, and since I am not psychic, it is actually entirely reasonable of me to be rather ignorant of what is going on inside other people’s heads if they don’t tell me in some way. I still don’t see what any of this has to do with self awareness, and when people try to defend it as self awareness I am generally inclined to view them as being entirely caught up in flawed neurotypical thinking, mistaking what other people think of you for who you are.

I also read an article that tied lack of self awareness in social situations to an overactive sense of self protection, with people on the autism spectrum seeing danger where other people see none. It went on to encourage people to teach us autistic types that there is no danger in various social situations. It happened to use the ‘loud noise’ example – something people on the autism spectrum with respond to as if it’s a threat, but neurotypical people will be less likely to do. Because apparently neurotypical people know better. Only if a loud noise is physically painful, who is to say there is nothing harmful about that? If a crowded area presents an overwhelming sensory assault, pointing out how other people are happy won’t change that. Trying to convince me that I shouldn’t see groups of people as a threat only ignores the very real problems it presents to me. Not problems that “seem” real to me, but problems that ARE real. Problems that result in pain, sensory overload, stress, and decreased ability to function. Don’t try to tell me that’s not harmful. If my self preservation instinct tells me to stay away from crowds, maybe consider that there’s a good reason for that, instead of assuming said instinct must simply be overactive because you aren’t having any problems.

Now, I will actually admit that in certain areas my self awareness is, in fact, not so great. There are a number of different things that can manifest to me simply as a stomache ache. Generally when my tummy is aching I need to run down my list of the most likely things it could be (need to use the bathroom, need to eat, ate too much, feeling anxious) in order to figure out what’s going on and what I should do about it. My emotional awareness is also iffy. I am not too terrible at knowing what I am feeling, but knowing the intensity is another matter entirely. I really hate those 1-10 scales mental health people sometimes like to use to gauge how a person is feeling. When it comes to intensity of a feeling, I am mostly reduced to “a little,” “a medium amount,” and “a lot.” I simply cannot detect any finer grain of detail than that.

In other ways, though, I sometimes think my self awareness is better than your average neurotypical’s. I take pride in being as aware as possible of my motivations and desires. I generally try to tell the difference between an actual reason I am doing/want to do a thing, and the justifications I invent about it. As far as I can tell, most people put a lot of weight on their justifications and prefer them to root reasons. Justifications tend to be more comfortable and conform to the stories well tell ourselves about who we are.

Mostly, though, I want people to be more careful about when they talk about self awareness and autism. And I really wish people would stop trying to conflate social awareness with self awareness. It’s gotten tiresome, and personally, I find it much more useful to separate the concepts. Mashing them together doesn’t help anyone, except maybe people who want to feel superior to us lowly autistics. And I have no sympathy for them.

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That sympathy vs. empathy video

Ok, so I finally watched that video that I’ve been seeing everywhere.

Here it is, by the way:

I’ve been a little trepidatious about it because I was worried it would approach empathy and sympathy in a way that I find icky.

I was right.

So ok, the video made some really good points. The actions they are labeling as “sympathy” really are harmful actions that lots of people engage in, but shouldn’t. It’s true that people shouldn’t try to make it better or point out a silver lining or similar sorts of things.

Regarding empathy, I also agree that it’s true that people should do their best to be with you in your dark place. I mean, I wrote about this.

But then there was that part when Bear goes down into the hole where Fox is, and says “I know what it’s like down here.” And the video lost me right there. I HATE it when people claim they understand. Really. It’s awful. Because most of the time they DON’T understand. Not really. When Bear joins Fox in the dark hole, he’s being a good friend. He’s joining the fox and sharing his experience. That’s awesome. But Bear has a ladder. And a lightswitch. And went down there of his own free will, while Fox had the ground just fall away. And that FUNDAMENTALLY changes the equation. It’s like spending a day in a wheelchair and then claiming to totally understand what it’s like needing a mobility aid all the time. You may be able to temporarily share the experience, but you can always leave it behind and go back to your life where all this, whatever “this” is, is not a thing. Honestly, I really hope you get why this is not a good thing. When you have power over your circumstances, and you can leave whenever you want, it is not the same as it is for a person who is stuck there.

Now, maybe at some point in the past Bear had a similar experience. Maybe he was in a hole with no ladder or lightswitch, and can draw on that memory to have an idea of what the fox is going through. But even then, his experience was different because it was HIS EXPERIENCE, and not Fox’s experience.

Then there was “Ooh… um… want a sandwich” Giraffe. Another thing I’ve talked about over on my blog is the fact that we CANNOT assume that a person’s ability to express themselves is equivalent to a person’s ability to think. Or feel. For all we know, “want a sandwich” lady is, in fact, feeling all of those empathy feelings. She could very well be struck deeply by what was shared, and care a lot. And maybe she just doesn’t know where to go from there, and out comes something awkward. I know I’ve been in that position. I’m sure lots of people on the spectrum have been in that position (look up autism and hyper-empathy if you want to read more on that). All that video did was demonize the awkwardness, and push a bunch of assumptions about her connection or lack thereof based on a few words. So not cool.

Though I also want to add – maybe that wasn’t awkwardness at all. Sometimes when I’m getting really wobbly, a sandwich is exactly what I need, and my bf has “check to see if she’s eaten” high on his list of things to look at if I’m doing badly. And in some situations – not all of them, but some – doing some “at least’s” can be helpful in terms of perspective taking. I mean, if a person is struggling with depression, they might lose perspective. Their time horizon might be really short (this happens to me). For those people, in those situations, giving some perspective can be VERY useful.

I actually like to use the word sympathy (or similar) in these situations. Because I’m not going to go claiming I understand, as though my experiences are the same as someone else’s. They aren’t. So I can say “I have been through something similar and I can sympathize with your experience. I know how much it sucks. I am here for you, and I care.”

But then, maybe I haven’t been in a similar hole. I’ve never personally experienced racism. Occasional bigotry, sure. Sexism, definitely. Ableism and… um… mental-illnessism, totally. But racism? Nope. My ability to understand the experiences of a person who is experiencing racism is far far less than my ability to understand the experiences of another autistic person, or another person who deals with depression or anxiety. I can, however, draw on my own experiences of oppression, believe their experiences, and connect that way. All the while admitting that no, I don’t really understand. I can’t really understand. I can believe, I can sympathize (yep, the dirty word again!), I can care, and to whatever degree I can attempt to connect, but that’s pretty much as far as it goes. I also like it on the other end. The first comment in this here post started with the commenter sympathizing with me, and it was exactly right. It was wonderful. Sympathy is NOT some icky thing embodying harmful behaviors.

So yeah. This video bothered me. I agreed with most (though definitely not all) of the commentary on the basic behaviors, but I hate how it used the word “sympathy” as something dirty and bad. I also hate that it’s supposed to be good to claim to understand. Plus, the fact that it contrasted one person’s actions to another person’s feelings was rather problematic.

People sometimes claim to understand me. They usually don’t. They are drawing from their own experiences – which are different from mine – and then trying to make a connection. Which is fine and good, but it usually comes with assuming that my experiences are like theirs. Which they aren’t. So yes, connect with me. Yes, bring up similar experiences that lead you to be able to sympathize with me. But STOP saying you understand.

Finally – that video never did stop to mention, even briefly, the idea of just checking in with the person to see what THEY need or want. I hate it when people say “I understand.” Maybe someone else loves it. Asking me if I need a sandwich can be incredibly helpful to me, but maybe someone else would find it insulting. Some people find assistance getting perspective really helpful. Other people do not. There is no one right answer, and just finding out from the person in question what they need should be considered very important. That the video didn’t even bother to mention it was downright disturbing.

If that’s what empathy is – pretending to understand when you honestly don’t, and doing what you think is “empathic” rather than actually checking in with the person – I want no part of it.

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Parallel Play

Parallel play! Picture by the fabulous Kimchi Cuddles

So there’s this thing called parallel play. It’s one of four general stages of play that people are generally expected to progress through as they mature. So first of all, how about a quick run-down of those stages:

Solitary play: Basically, this is when you’re doing your own thing in your own way.

Parallel play: When you’re in the proximity of someone, and you’re each doing more or less the same thing, but you are not otherwise interacting. The above picture would be an example of this.

Associative play: When you’re with another person (or a group of people), doing the same thing, and interacting to share materials and whatnot. So everyone drawing pictures but sharing/passing around the paper, markers, etc would be a form of this.

Cooperative play: A more organized form of social play, such as playing a board game together.

These types of play are usually described in terms of age groups, with the idea that as a person gets older, they progress to increasingly social forms of play. What tends to not be explicitly stated but I kind of feel an undertone of is that the more social forms of play are somehow better. This article while ultimately paying some lip-service to the idea that parallel play is healthy among adults, still gave me an overall sense that parallel activities were bad. Or at least, less good than social activities.

Thing is, the more social of an activity I’m doing, the more draining I find it to be. Only I do actually like having friends and while I may ultimately want to spend the vast majority of my time alone, I do want to socialize now and again. Which basically is to say – I LOVE parallel play. Sitting on a couch with a friend while we both read but don’t talk to each other is, to me, a lovely way to spend an evening. When I socialize around crafting it is much the same way. Sometimes we will talk and interact, and sometimes we will simply each quietly do our own thing, in proximity to each other but not interacting.

This is a relaxing, pleasurable way for me to socialize. Because to me it IS socializing. I am (hopefully) enjoying the proximity and shared activity, and I find that meaningful. We don’t actually need to interact all the time.

I think parallel play does not get enough respect. This article actually listed it as a “warning sign” for autism in a toddler, even though it is a totally normal and developmentally appropriate way for a toddler to play.* Personally, I think parallel play is an awesome thing for adults to do as well. Actually, I suspect parallel play is fairly common amongst adults (though I cannot actually verify this), though it may not be the primary way adults interact. I also think that’s AWESOME! The picture I chose for this also illustrated the pressure I sometimes feel that I’m not “supposed” to be engaging in parallel play. If I’m with someone, I should be interacting with them, right? Well… maybe not always, really. Maybe we should consciously make room for this as a totally valid social activity. I could see someone claiming it as a problem if it were the only way I ever interacted (I’m not entirely sure I’d agree, but I at least think a solid argument could be made); but as a low-cost way to enjoy another person I think it’s great.

What do you think of parallel play? Is it something you like to do?

*Though that article also referred to autism as a “childhood epidemic,” so I’m not sure how seriously we should really take it.

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This is (my) autism

Instead of just sitting back and letting an NT make declarations about what autism is, a bunch of us are speaking for ourselves. This is my contribution; this is (my) autism.

It’s a mix. There are goods and bads, challenges and joys. It is not any one thing.

It is difficulty making and keeping friends.

It is passionate joy about my interests…

… Which translates into not-insignificant skill in those interests.

It is sensory processing difficulties.

It is both joy and confusion in the friendships I manage to have.

It is my childlike joy and silliness that I hope I will always experience.

I spend time sitting at my craft table, intent on whatever it is I am making. I have no idea what my facial expression is reflecting; I am far too consumed by what I am doing. It is joyful, and I love the things that I make. This is (my) autism.

Other times I am overwhelmed. Too many sights and sounds and feelings and people throwing their emotions and thoughts all around them and I just need it to stop and I either catch it in time and escape or I start screaming. This is (my) autism.

I think and feel in black and white. Sometimes this is good, sometimes it isn’t. I am either passionate about what I am doing, wanting to throw myself into it utterly, or I simply do not care. This is me, and this is (my) autism.

Oh, and just for the record – it is far more than what I can simply list on a page. It is integral to me. It is my brain, how I think, how I perceive the world and how I perceive myself.

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You don’t get me

Ok, so I’m planning on making two main points here, which can be summed up, very roughly as follows:

1. You don’t get me.

2. You don’t need to get me.

Now, number 1 is a very broad generalization that isn’t actually entirely true. Lots of people have various forms of shared experiences and can, to a degree, understand each other, or at least certain aspects of each other. Maybe you are also on the autism spectrum, maybe you are also an adult, maybe you also have a non-standard experience of gender. The more things we have in common, the greater an understanding of each other we can have.

However, our understanding will never be complete. There will always be things about other people that we just don’t get. Things that are confusing, that don’t make sense to us, things that seem like they *should* be another way.

I’m an introvert. Introverts (at least, particularly strong introverts) make up around 25% of the population. The other 75% of the population is made up of extroverts and ambiverts. Point being, introverts are in the minority. As an introvert, I’ve had a few experiences with extroverts that all went roughly the same way.

extrovert: You should like socializing in groups.

me: well, I don’t. I like socializing one-on-one.

extrovert: no, that makes no sense because Reasons. Just try it, you’ll see.

me: I have tried it, many times. I’m not like you, and I find it much easier to socialize one on one.

extrovert: I don’t get it, therefore I don’t accept it. You must be wrong.

Seriously, that is not cool. Don’t do that, by the way. As an introvert (a really strong introvert) I find extroversion baffling. I don’t get it. Getting energy from people? Enjoying socializing in groups? This makes no sense. If I were to assume my own experiences were universal, I would conclude that extroverts are all fooling themselves.

Of course, they’re not. I know this. Because I don’t actually have to get it. I’ll never get it, it will never make sense to me, but that doesn’t mean that I can’t accept it. There are people out there, lots of people out there, who honestly enjoy group socialization. Who find it easy and relaxing. There are people out there who like, even prefer, spontaneity in their social life. There are people who don’t need routines, or who experiences routines as ruts.

I don’t get any of that. But I accept it. Sadly, sometimes it seems like people aren’t offering very much acceptance in return. Not only that, but all too often I see people say “I don’t get it” as just another way of saying “I don’t accept it, you must be wrong.” That’s not cool at all. You don’t need to get it in order to accept it. In fact, I’d go so far as to say that even if you can get it, you’re better off accepting first, and then getting to the understanding bit. Because in the end, acceptance is more important.

I also think the phrase “I understand” is overused. People seem to think saying “I understand” is a good way to show compassion. Maybe I’m strange, but I don’t find this to be the case. I mean, it can be nice if it’s coming from a person who really does understand. However, if you have no experience with anxiety or depression or being on the autism spectrum or whatever else, then you clearly do *not* understand if I am having difficulty in one of those areas. Personally, I’d rather not be lied to. Also, I don’t need you to understand. I need you to accept that what I am saying is true, even if it doesn’t make sense to you. I need you to tell me that you care and you’re here for me, even if you don’t really get it. That, in my book, is compassion. Certainly not faking an understanding that you don’t have.

Most people are not like me. Being a woman on the autism spectrum, I am in a minority. Most people are not going to understand how I experience the world, and that’s ok. All I ask for is acceptance. I want to be heard and believed.

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Privilege, validation, and reflection

Privilege is such a tricky thing to talk about. Often people with privilege don’t like to admit it, or feel defensive if it’s pointed out. I often see people assume that privilege means that life has been handed to you on a silver platter and you didn’t have to work for anything, so if their privilege is pointed out, they think they are being accused of not having worked for what they accomplished.

In activism spaces, this is not what privilege means. Privilege is more subtle than that. Now, I’m not going to try to explain what privilege is. That would be a blog post all to itself, and there are plenty of really good write-ups out there that have explained it all much better than I could. Instead, I want to talk about one particular type of privilege (since privilege takes many different forms). It’s a general type I see a lot of when looking at various lists of privilege (white, male, cisgendered, and straight being the ones I see most often talked about). That is – that you see people like you on a regular basis. That your reality and identity is reflected back at you by popular media and the people around you.

When you enjoy that sort of privilege, it’s easy to take it for granted. In my post ‘autism and race,’ I wrote:

I need to confess something. Until that post by TheAutcast, it had never occurred to me to think much about autism and race. I am white and I sat comfortably in my white privilege, seeing white faces reflected back at me, and it did not occur to me to question this.

And it’s not like I’m blind to this sort of privilege. I’m aware of it with things like gender and disability. But when something about you is privileged, it’s really easy to just not notice.

I have also found that it’s easy to dismiss. I grew up with the message that external validation was going to end when I turned into an adult, and that people are not supposed to need that sort of thing. This, I think, had two basic results. In the areas where I do experience that kind of validation – seeing people who are like me – it’s easy to take little notice of it, or dismiss it as not “really” doing anything for me. In areas where I do not experience that kind of validation, I find that I wish I did, but I have vague feelings of guilt and shame associated with those desires.

I am slowly realizing, however, that this is actually a really big deal. Like that cheerios commercial, and some of the reactions I saw about how it’s SO AWESOME for biracial people and/or mixed families to actually see other people who look like them on TV. And, importantly, being portrayed in a totally casual, ‘this is no big deal,’ some families look like this kind of way.

Or this post talking about race and adoption, and the impact it can have on children to not regularly see people like themselves in their daily life.

And there’s the fact that I love seeing strong, confident characters on TV who also happen to be introverts. Or the times when people have reflected my gender identity back to me, validating and supporting me in it, and just how utterly good that felt.

This kind of thing matters. It’s a privilege that everyone should enjoy. I don’t really know of many neurodiverse characters being represented in popular media, and when it is implicitly referenced it is often in a not terribly positive way. I find myself wondering what it would be like if I saw a strong, confident TV character who just happened to flap their hands when excited, or spun in a chair when stressed, or was sometimes confused in social situations, or just needed to fixate on a few specks of dust sometimes. And if all those things were presented simply as part of who this person is, rather than with a “what’s wrong with you?” tone. No manic pixie dream girl, no person who’s funny because they are broken, just a strong, interesting character who happens to be on the autism spectrum.

Wouldn’t that be cool? I think seeing that, in a likable, positive character, would feel really good. I think it would be awesome.

This kind of thing matters. The validation of seeing people like you, of having your identity and your reality reflected back at you, it matters.

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