Tag Archives: difference

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. 


Filed under ability, opinion, request

Talking about horses again

So where I ride, there’s this one horse I want to talk about a bit. His name is Stitch. Stitch is fairly old, fairly creaky and stiff, and does not have a huge amount of energy. He won’t win any races or fly over jumps, and when riding him you can’t push him too far because he just only has so much in him.

And it’s SO WEIRD to write about him that way. Because at my barn, that’s just not how we talk about horses. We don’t bother to spend time talking a lot about what a horse can’t do, because we understand that every horse has something that they *can* do, and that’s what we focus on.

Overall, we do not rely on horses in our society the way we did in the past. We don’t really need horses for our everyday lives. Yet even so, there are still a solid number of tasks out there for horses to do. There are pulling horses, jumping horses, running horses, barrel racing horses, therapy horses, dressage horses, and probably more. Many of those jobs cannot overlap, so a horse that is very good at one job would be terrible at another. We, as horse people, understand that it would be absurd to choose one arbitrary standard by which to judge all horses, so we don’t do that. We don’t even talk about how we should not judge horses that way, because it is a non-issue for us.

So at my barn, when we talk about Stitch, we talk about his strengths. And yes, he does have them. We’ll talk about how he’s sweet and kind and gentle. We’ll praise him for never losing control and being disinclined to spook. We put beginners and brand new riders on him, because he is a wonderful lesson horse, taking things slow and gentle for people who are first learning. He’ll carry disabled riders in his role as a therapy horse. He is very very good at those things.

It just makes practical sense to find each horse’s strength and focus their job around that. To do anything else just be, well, ridiculous.

So why is it so hard for us to do that with people?

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Filed under ability

Let’s be more understanding

There is a thing that people do that I do not like. And by “people” I mean “everyone.” Me, you, that random stranger down the street, your friends, your family, everyone. EVERYONE. In my general efforts to increase my compassion, I am trying to be more aware of it and to stop doing it. Refraining from doing so takes effort and can even be uncomfortable, but I believe that it is worth it.

That thing being – when seeing people do a thing that we do not understand, deciding that the thing is stupid or worthless.

Yeah, this isn’t really an autism thing (though I do plan to relate it back to autism, of course. this is part of my speaking out). It’s an everyone thing. I talked about it a little when I spoke of social rituals. I see autistic people looking at unfamiliar social rituals and deciding that the ritual they are looking at must have no meaning, simply because we cannot see the meaning. I see it so often. I’ve done it myself. It’s such an easy way to think.

I’ve known people who thought that simple “thank you’s” had no meaning, because they could not see the meaning, so they did not say “thank you.”

Many people have declared the “how are you?” ritual stupid and meaningless, because they could not see the meaning (to reiterate – it is a way to ritually acknowledge a person’s humanity if we are not otherwise strongly connected).

I’ve seen people declare the fast-paced chattering of teen girls meaningless, because they could see no meaning.

And that’s so easy to do. Such an easy thing to think. But think about the times when it is turned against autistic people.

When people cannot see why we flap our hands, so decide it must be meaningless.

When people cannot understand why we may need to escape from sensory overload, so decide that the best idea is to just force us to stay in the situation.

Or, going a slightly different direction, when people cannot understand why we cannot understand some social formula, and so assume malevolence in a simple mistake.

It becomes easy to see the problem when we see it used against us. However, the problems are not single, isolated things. They are part of an overarching behavior set that is entirely pervasive in society (at least American society. I cannot speak to other countries or cultures). I mean, even the sentence “I don’t understand why people do that” is code for “that thing people are doing is bad.” It’s used even when the thing in question isn’t harming anyone. When the action in question is just *strange* to our eyes, in some way.

I want to advocate for acceptance of our autism. This means that society needs to learn to accept how we are different. People need to learn that just because we look or act differently, that doesn’t mean the things we do have no meaning. A neurotypical may not find any meaning in flapping their hands, but that is not adequate reason to conclude that no one can find meaning in flapping their hands.

The thing, though, is that because I think it is a part of this overall failure to accept differences just in general, it is that overall failure that needs to be addressed. So if I don’t understand a thing that a person is doing, I make an active effort to conclude that the problem is on my end and not theirs. It is my failure to understand, not their failure to make sense. As I mentioned above, this can be uncomfortable. It is easier to blame other people so that I do not have to see shortcomings in myself. Especially when society at large is so quick to shove all my shortcomings in my face and blame me for every misunderstanding, every cruelty someone perpetuates on me, every awkward moment that happens between me and anyone else. People blame autism far too often, but that is a rant for another time. The point is, we want people to accept their failure to understand and not shove it onto us. We want people to accept us, and realize that if they want to understand they will need to take the time to do so.

This means that we need to be willing to do the same. It is not ok to ask others to do a thing that we are not willing to do ourselves. So when I see something I do not understand, I assume that the fault is mine. I do my best to accept, regardless of my level of understanding.

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Filed under ponder

I am not like you

Once upon a time I wanted to write a post about conflicting desires. Specifically, about my desire to fit in and pass for normal, but also my desire for people to recognize and remember that I’m different. I have a note on it sitting in my list of possible blog topics to write about.

My desires, however, are getting less and less contradictory as time goes on. Oh, sure, I can get tired of my constant status as outsider, of the fact that I never really feel like I’m part of a group… but “outsider” is increasingly part of my identity, and I have found that sometimes I am more a part of a group than I perhaps had thought.

However, it’s the second of those desires that I’m actually wanting to talk about there. The desire for people to just bloody remember that I’m different, that I’m not like them. I won’t act like them, I won’t think like them, and I will sometimes flub up because socializing is expletive hard and I do my best but sometimes my best just isn’t expletive good enough.

Earlier today (the today of writing this, who knows when I’ll actually post it) I wrote this on an online aspergers group:

I’ve found that as an adult, the expectations on me to understand socializing are much higher [than they were when I was young], and the consequences for making a mistake are also higher. People will often assume malice when I make a mistake as well – that I must have intended to be rude. The better I pass for normal the majority of the time, the worse it is when I flub something up.

This seems to be the way that it works. I make no secret of the fact that I’m on the autism spectrum. People who know me generally know this particular piece of information about me. Yet sometimes people, people I’m close to, forget. I know this because I’m been told as much quite directly. Someone pushes me to do a thing I cannot do, and will say “I forgot that you’re different” when I get all “what the hell?” on them.

I do make social mistakes. Sometimes I hurt people. Not because I want to, but because I’m not very good at navigating the treacherous social waters. When it comes to social waters, I’m not very far above kiddie pool level. And it does seem to happen that way. Assumptions of malice, I mean. When I muck up, I want to know about it. I’m happy to apologize and do what I can do make it better. I try, I really do.

But the assumptions of malice wear me down. Reading intent into a mistake, it gets tiresome. It gets frustrating, and I get downright angry about it. Even worse is the assumption of malice in self-preservation. Like that time someone assumed all sorts of intent when I wouldn’t look at her, when in reality I just couldn’t handle that much visual stimulation. It happens. I don’t like looking at people at the best of times. I’ll let you look at me even though it makes me uncomfortable, so maybe let me not look at you, ok?

Mostly, I wish people would stop thinking they know why I’m sometimes so odd. A mistake is just a mistake. Looking away is just a direction. And please remember that I’m not like you.

I want to find a way to make it easier for people to remember that. I want to do it without actually making more mistakes. The effort I spend to handle myself and not make those hurtful mistakes is something I intend to continue. However, I think this is part of why I want to just keep on stimming. It’s why I want it to be ok to be odd, when those things are just differences. I don’t want to blend in anymore. I want people to notice that I’m different. I want this not just because I want people to be a little more understanding at my inevitable mistakes, but also because I want people to see *me.* Really me. Not some other me that pretends to be like them, or a fake me that is totally typical, but me. Autistic me. A me that makes twitches and stims and sometimes loses body parts and doesn’t want to look at you and is passionate about my interests and yes, sometimes makes mistakes.


Filed under personal


Search term post! Someone found my blog by searching for “why does society seek to dehumanize and demonize the mentally ill.” You know what? That’s a really good question. I mean, it happens really a lot, like when that lady wrote that letter calling an autistic boy a wild animal and telling his parents to euthanize him. It’s astounding how awful some people can be. How little empathy some people can have.

Let’s talk about one of my pet peeves. Actually, I think it’s more than a pet peeve, since it’s an attitude that is actively harmful. I call it the “it’s all your fault” syndrome. It’s that thing that causes people to say that since autistic people have trouble understanding typical people, it’s because we lack empathy (our fault). Yet since typical people have trouble understanding autistic people, it’s because we’re flawed (still our fault). If we get bored listening to a lot of mindless chatter, it just shows that we lack empathy. If someone else gets bored listening to us talk about our special interest, it also shows that we lack empathy.

See where this is going? Somehow it’s always our fault. Somehow, no matter who is confused or bored or whatever else, the fault is our differences or “lack of empathy” or whatever else.

I call bullshit.

Personally, I think everyone lacks empathy. I think empathy is not nearly so prevalent or so easy as people try to make it out to be. Thing is, most people can fake it. Most “empathy” seems to involve assuming people are like you. When you’re typical and many of your feelings and responses are typical or close to typical, this makes you “more empathic,” since your random guesses as to what other people are thinking or feeling are close to accurate. When you are not typical, when you think things and feel things that are distinctly different from what most people think and feel, then your guesses are going to go wild.

Yet all those typical people with their apparently amazing empathy somehow consistently fail to empathize with people on the autism spectrum. Why? Because we’re different. Because we aren’t like them, we don’t feel like them, we don’t think like them. However, admitting to their own failure in empathy is, apparently, anathema. No, they can’t do that. So instead they blame us. It’s our fault. It’s always our fault. If only we weren’t so different, you know?

Which is to say, I think people dehumanize and demonize the mentally ill due to a lack of empathy on their parts. They can’t understand us. And for some reason, this translates into a failure to accept us. I also think people have a really hard time with the idea that “normal” people can do bad things. So somehow “violent” and “mentally ill” have become synonymous is people’s minds. And because they can’t (or won’t) empathize with what it’s really like to be mentally ill and/or different, few people bother to challenge their own perceptions. The actual facts don’t really mean a lot to way too many people.

And honestly, this isn’t just about mental illness. People do this to physical illness and physical disability as well. I can see it any time I see people claiming that type 2 diabetes is always the sick person’s fault. I can see it whenever someone would rather say “gee, it sure was nice of that business to actually follow the law and put in a disabled entrance” rather than “disabled people might feel discriminated against when they’re told they have to enter in the back.” Or any time customer service people ignore anyone in a wheelchair, instead only serving or talking to able-bodied people. Or any time people say they’re all for equality, but really, it’s ok to pay disabled people less than minimum wage.

It’s all around us. It’s everywhere. It’s not ok and it’s frustrating and I don’t know how to fix it, but that doesn’t mean I’m going to ignore it.

Though I will say – just after writing this I saw this here video

So maybe it’s not ALL bad.

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Filed under rant


creative commons image by marcandrelariviere on flickr

This can be about what it feels like.

I want to talk a bit about shame and how I deal with shame. I grew up with really quite a bit of shame, and it became a rather pervasive part of my life. I felt ashamed of being so different, ashamed of struggling with things other people found easy, ashamed of my shyness, of my awkwardness, of all sorts of things.

Of course, I imagine most everyone grows up with shame. So much of our culture seems to be based on convincing people to be ashamed of something, so we feel shame if we are the wrong size or the wrong shape or the wrong gender or are attracted to the wrong gender or any number of things. Even though none of those things are actually wrong, we are bombarded on all sides with the message that they are. It’s more or less impossible to get away from, and there is plenty of shame to go around for everyone.

For a long time my primary method to deal with shame was to try to “fix” whatever I was ashamed of. I mean, if I feel shame it much be wrong, yes? If I am ashamed of being shy, then I should just stop being shy! Ashamed of being an introvert? Turn into an extrovert! Ashamed of feeling insecure sometimes? Stop feeling insecure!

Of course, not everything that I feel ashamed about can be so easily fixed. I don’t really like being socially awkward, but I can’t just get up some morning and decide I’m not going to be awkward anymore. So instead, I decided to try to hide those things. To just not show my awkwardness, or when I’m feeling insecure, or even that sometimes I have sadfeels.

Unfortunately, I have found that this tactic does not work on two levels. One is that I just can’t always hide things. Sometimes, despite my very best efforts, my insecurity will show. Or my sadfeels. And my awkwardness, well that just shows no matter what. So by trying to always keep my shameful things hidden, I was basically setting myself up for failure.

The other problem is that trying to hide just reinforced my feelings of shame. It’s already not very fun to deal with things like insecurity and sadfeels; piling a bunch of shame on top of them just makes it worse. I bought into that shame, always and entirely. And the shame I felt whenever I failed to properly keep everything hidden and tucked away… well, that was awful.

A few years ago I decided that I was well and truly tired of feeling so much shame so very often. Since the old techniques to deal with the things I was ashamed of were failing rather spectacularly, it was clearly time to try something new.

My something new, that I have been practicing for maybe a couple of years now, is to attack the shamefeelings directly. So instead of trying to stop feeling insecure or trying hide my insecurity, I am trying to not be ashamed of the fact that sometimes I am insecure. Instead, I am trying to own it, the same way I am working to own my good qualities.

For instance, sometimes I get really insecure. That is no fun at all and feels icky. Nonetheless, I am not going to hide it, or apologize for it, or act like it’s wrong that I feel that way. Quite frankly, dealing with the insecurity directly is quite enough for me. I don’t want to deal with all that other stuff too. So instead I have been practicing simply admitting it honestly when it happens, asking for reassurance if I need it, accepting that reassurance at face value, and moving on.

What is still surprising me is just how well this has been working for me. It might still be too soon to tell for sure, but so far there has been significant progress in shedding my shame and leaving it in the past. It is slow going sometimes, and I still sometimes run into the Wall of Shame and need to deal with that, but little by little I am owning myself. ALL of myself. It isn’t easy, by any means. Shame seems to have a way of digging itself into me and grabbing on with hooks. However, it does seem to be possible to shed it, even if just a little bit at a time.

The side effect that I was really not expect but is super nice, though, is the impact this has had on the ooky things themselves. The more I own my insecurity (or whatever else), the more I treat it as just another part of me that sometimes needs to be dealt with rather than as a shameful secret I need to hide, the more secure in myself I feel. Tackling it without all that extra baggage has made it *so much easier* for me to deal with insecurity/etc quickly and easily.

The only real snag I sometimes run into is people who are surprised by my approach. Shame is so pervasive in our society and the push to hide what we are ashamed of is so strong, that people sometimes think that if I am admitting it, I must be in terrible shape. So then I explain all of this and how I am owning it and really, if I ask for a few words of reassurance that is actually all I need. As snags go, I think this one is relatively minor.

Overall, I increasingly think our culture of shame over our differences or perceived imperfections is a significant problem. The only people who seem to benefit from this are people who are trying to sell us things, and unfortunately there are a lot of those people. So, as much as I can, I reject this part of my culture.

Shame does not make me better.

Rejecting shame does.


Filed under personal, that's not helping