Category Archives: rant

I admit it! I’m serious!

It all started with my post on Sheldon Cooper. I had no idea it would get the kind of attention that it has. Not so much big shares or anything but, well, if you look for Sheldon Cooper and Asperger’s I’m generally on the first page on google, so I get a constant stream of views. Apparently it is still a question people ask their search engines about. Since I haven’t closed comments, I still occasionally get comments from people, usually criticizing me in some way. As a general rule, I just leave them alone.

Some, however, have really been getting my back up. Specifically, the ones that are telling me that I’m just taking it all too seriously. So I’m just going to admit it right here – YES, I’m taking it seriously!

In regards to that post, yes it’s about a TV show and, in general, TV shows are not serious business. However, it isn’t JUST about a TV show. It’s about societal attitudes towards autism. It’s about how people talk about neurological differences, the assumptions they make, how quickly people will accept prejudice and bigotry and horribly offensive attitudes towards people on the autism spectrum.

Also, it’s about my life. Let me repeat that, MY LIFE. It’s about the world I live in and the fact that I have to navigate and try to get by while dealing with people who have absolutely no clue that it might actually be offensive to talk about Asperger’s as though we’re not really people, as though just saying “this character is on the autism spectrum” is some terrible constriction that would horribly limit the freedom of writers. People don’t get it. So I write about it. I write about my life and my beliefs and the things that impact me and YES I take it all seriously, dammit! This is not some academic exercise for me!

And while comments on that post got me started on this, it’s not just that post. Any time someone tells me that I’m taking something that impacts my life in a significant way “too seriously” I’m going to wind up ticked off. I’m not taking it too seriously when I learn that some people here in the US get less than minimum wage. Or how about things that don’t impact me directly, but do impact others who are disabled? I’m STILL upset about my post on disability and “disabled entrance in the rear” and the kinds of responses I got to the poll. I’m still upset that people said, in all sincerity, “I’m happy the small business paid money to make an entrance” which just smacks to me of saying “disabled people should be grateful they get an entrance at all, even if it does involve going into a narrow alleyway, using a service elevator, or going through the kitchen.” Just for the record – yes, all those things actually happen. You might wonder why I’m still upset about that. The post was months ago! I’m still upset because IT’S STILL A THING. The problem is not fixed, and it isn’t going to be fixed until people start to care enough to get upset about it.

Writers of TV shows are going to continue to perpetuate crappy ideas about autism and Asperger’s. News organizations are going to continue to report on us like we’re not quite human or things to be afraid of. People are going to continue to take all that in stride, because apparently it’s still ok to treat neurological differences or disability in crappy, prejudiced ways. And I’m going to keep on taking it all seriously because these things are not ok. Having a different neurology is my life. When people talk about what Asperger’s is or isn’t, they’re talking about me, and everyone else who’s an aspie. I refuse to just shrug and act like it isn’t a big deal just so that other people don’t have to think about it or feel bad about it. My life is a very big deal to me, and I will continue to take it seriously.

Maybe eventually taking disability/mental illness/neurology seriously will just be expected, instead of something people scold me about.

 

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This or That

So over on the Asperger’s Support Network page on facebook, someone asked a question:

How do you determine what behavior is due to Aspergers and what is not?

Turns out I wanted to answer this question in a blog post, as a comment on a facebook post just wasn’t good enough for me. Actually, the way I first read this question was “what behaviors are due to Aspergers?”

My answer to that one is “all of them and none of them.”

This question worries me. They are always presented without context, unless the anonymous asker included context in their question – which they usually don’t. This one, of course, also did not. So I don’t know who asked or why they want to know or if there is any particular behavior they are worried about. If there is, obviously I am not sufficiently informed to answer.

However, as to behaviors in general… well, here’s the thing. Autism is pervasive. I can’t really put my different behaviors into neat little piles and say “these are the autism behaviors” any more than I can have “female behaviors.” My behaviors are simply my behaviors. Asperger’s syndrome affects everything I do, all the time.

What I really want to say to questions like this is – don’t. What is the purpose of saying “this behavior is due to Aspergers?” What are you hoping to accomplish? Ultimately, I cannot imagine a good reason to do this, and I can think a whole lot of reasons not to.

Before I go rambling away more, I just want to make my point really clear – never, ever, write off a behavior as simply “part of autism.” Never.

I imagine this topic has been coming up a lot since that article about Peter Lanza (Adam Lanza’s father) came out. The writer spent quite some time interviewing Peter Lanza, and wrote a lengthy, rather sad, article about his perspective. There was one bit that is particularly relevant here:

Peter and Nancy were confident enough in the Asperger’s diagnosis that they didn’t look for other explanations for Adam’s behavior. In that sense, Asperger’s may have distracted them from whatever else was amiss.

As I’ve said really quite often by now, I am a fan of labels. Having words empowers me, gives me direction and coherence that I might otherwise lack. The word “Asperger’s” drastically improved my life. Knowing what’s going on, being able to have a handle on it, having a WORD, that was amazing to me. IS amazing to me. Yet sometimes people respond to labels in troubling ways. Ways that show a lack of insight, of this “theory of mind” thing that allistic people like to criticize us about so much.

Sometimes, some people will see a label and just stop there. An anomalous behavior will be attributed to the label, they will simply say “well, people with [label] just do that sometimes.” and not look further. It’s why Landon Bryce of Thautcast fears “wandering” becoming a diagnosis. Because yes, sometimes autistic children wander, but it’s important to look at why. It’s important to not just write it off as something autistic children do. Sometimes the wandering is, in fact, a matter of self-protection. Of getting away from painful circumstances, whether those circumstances consist of a painful noise, or sensory overload, or gay reparative therapy, or abuse. If we get to the label and stop there, we can’t find out if there’s more there.

A diary of a mom wrote about the same issue. About a child who banged his head in a desperate attempt to cope with constant pain, and no one looked into it because “autistic children do that.”

If a child withdraws, you can’t say “that’s just autism.”

If a child is hurting themself, you can’t say “that’s just autism.”

If a child wanders off, you can’t say “that’s just autism.”

It is SO IMPORTANT to look at why. And yeah, maybe sometimes there won’t be much of a why. I regularly get distracted by shiny things, to the point that Nee tries to keep me in sight when we’re out and about, because he’s never sure when I’ll suddenly feel an intense need to study some random thing. Yeah, it happens. But it also happens that sometimes people need to get away from something that hurts them. Sometimes an autistic child may not be able to say “that hurts!” in any way other than getting away from it. I am quite sure the same is true for some autistic adults. We don’t always have words, and when we do we can’t always use them in the way people think we should.

NEVER stop at the label. NEVER say “that’s just Asperger’s.”

Oh, and please don’t try to split me apart into “asperger’s parts” and “non-asperger’s parts.” Asperger’s is throughout me. I may not be a coherent whole, but it isn’t Asperger’s that divides me.

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Ignorance

There’s a phrase that I think really needs to get used more often. As it is, I hardly ever hear or see it, and I think that’s because it tends to be demonized and/or generally held in contempt. People tend to avoid saying, or even implying, it, because of the backlash that might occur if they do.

That phrase being, “I don’t know.”

Admitting ignorance seems to be a terrible thing in my culture. I’m not really sure why, but it’s definitely a thing. I’ve seen people talk about how they didn’t know something in a circumstance, and how they were SO AFRAID that someone would discover their ignorance so they tried really hard to act like they knew things even though they didn’t. While part of me looks at this in utter bafflement, another part of me sees how others will sometimes react when someone admits ignorance about a certain thing. It’s not very nice.

Specifically, I see a lot of judgement. If you don’t know a thing that they know, something must be wrong with you personally. It becomes some kind of personal failure on your part, of which you are supposed to feel ashamed. People will get condescending, arrogant, mean, all sorts of unpleasant things in response to a simple “I don’t know.” Not everyone, it doesn’t happen every single time, but it’s common enough for people to get nervous about admitting ignorance.

Now, I do think that people need to make a good-faith effort to mend their own ignorance. If you find that you don’t know something, look it up! Find information, put in some work to learn things. While I think it is important to be able to admit ignorance, we also need to be careful to not condone people derailing discussions and demanding to be hand-held through the basics (see: discussions on feminism or racism and how often they get hijacked by men or white people demanding explanations for every basic thing they could have learned elsewhere).

Still, there are plenty and LOTS of situations in which I think it should be ok to admit not knowing something, that people still seriously avoid. For instance, women don’t like to admit they don’t know what’s going on with their car engine at a shop, because the guys working there can be jerks about it. This is a problem.

When Nee and I occasionally need to hire contractors, one of the ways I vet them is by asking a question about something I don’t understand. The one who treats me like there’s something wrong with me is out, the one who answers respectfully, happy to help me understand something outside my realm of experience, is probably in.

 

Actually, I’ve sorta started checking people in general this way. There are a number of things I do to suss out things about a person I find important, that I’m kind of hesitant to talk about because I’m afraid of being accused of “game playing” or something. Anyway, one of them is this. I admit ignorance. I say, “hey, what does [word] mean?” (or whatever) The person who explains it with the assumption that I am an intelligent person who just never came across that before is good. The person who mocks me or talks down to me or is generally an ass about it doesn’t hear from me again.

Ultimately, I just think this needs to be ok. We need to create a culture in which it is ok to not know a thing. Yeah, we should be respectful about our own ignorance and not try to make everyone cater to us, but it should be ok to say “I don’t know” in response to a question, or to briefly ask about a thing if it isn’t particularly disruptive to do so.

Which means we also need to stop being jerks to people who say they don’t know something. I mean, everyone should stop being jerks, full stop. But right now this is my rant. Sometimes I don’t know things. That doesn’t make me bad.

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What am I?

So a while back I posted about self awareness and autism and how so many NTs seem to conflate social awareness with self awareness. Ya’ll seem to do it without even realizing it, acting surprised when people say “no, that’s not how it is, I don’t need social awareness to be self aware.”

I was thinking a bit where that might come from, and what’s involved in that. Ok, in that post I had said:

“mistaking what other people think of you for who you are”

Ok, so that’s a thing. Who you are and what other people say you are can, in all reality, be difficult to separate. When everyone around you says you’re a duck, it makes sense to take a look at yourself to see if maybe you are, in fact, a duck.

And I think many NTs don’t really question this all that hard. But I also think that NTs don’t actually run into a huge number of instances where large numbers of people around them insist that they are something that they are not. Off the top of my head I can see it for trans* issues, which certainly is a big deal, but that’s about it.

But when you are autistic, you have to do this all the time. For everything. With everyone. Because people will judge based on what they can see, and if they can’t see something in a way they can recognize, they will declare it not there.

So the non-verbal child who cannot communicate in a method that most people can recognize is declared to have a low IQ, to not know their own name, to not be self aware, to not be aware of their surroundings. We don’t know what’s going on in that child’s head, the thoughts that might be in there but not coming out in a way we can easily recognize. Can you imagine BEING that child? Everyone around you says that you don’t know who you are, that you can’t add or count or think or feel. That you don’t know what anyone is saying, because you don’t talk or respond to words the way they think you should. EVERYONE says this. Everyone believes it. Even the people who are supposedly on your side, supporting you.

And then there’s you. All alone. Bombarded with messages of who and what you are that are quite possibly entirely incorrect. How do you maintain your sense of self? How do you keep that from destroying you?

Well hopefully, you learn to disconnect what other people think of you from who and what you actually are. You forge a sense of self that is separate and distinct from the thoughts and beliefs of other people.

Because you have to, if you want to actually have you own identity and eventually grow into an adult who *can* show things in ways people can see.

And if you’re really lucky, maybe eventually people will see you as you are, rather than as you seem. But only those who are close to you, only those who get to know you, only those who learn that what they think they see may not be what actually is.

So yeah. I think we need to keep social awareness separate from self awareness. But I also think we need to get better at realizing that things aren’t always what they seem, that just because we can’t easily see something that doesn’t mean it isn’t there.

Because when we don’t do that, we can do some serious damage.

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More on bullying

I want to talk about bullying again. Specifically, the way some adults justify standing back and doing nothing. You’d probably heard it before. “They need to work out their own problems.”

Yeah, that one. A while back I heard it yet again as a way to justify not getting involved, and it struck a deep chord. It’s been bumping around in the back of my mind ever since, bugging me to write about it. So I’m going to try, let’s see how it goes.

Now, I know that non-parents are not supposed to talk about child rearing issues, so I am going to approach this from the only angle that makes sense to me – that of a former child who was bullied a lot. And yep, I was left on my own by adults who may very well have told themselves “they need to work it out for themselves.” At least, the ones who actually paid attention, rather than the ones who simply ignored it or the ones that joined in and laughed. That last group… geesh. I have nothing constructive to say about that last group.

Ok, but this is about that whole idea of letting kids work out their own problems. And you know what? I’m sure that it’s true in many cases. Kids have conflicts, and they learn their skills on how to navigate conflicts by, you know, actually navigating conflict. Thing is, I really hope kids navigate conflict with adult supervision whenever possible. With adults willing to give advice when asked, or step in when things get out of hand. Usually another way to learn things is from people who (hopefully) know that thing better than you do. Much of my learning crochet is from youtube videos – people who know things better than I do, so I go learn from them. Surely learning something as complex and nuanced as conflict resolution calls for the same thing.

Then there’s bullying. Here’s the thing – I am *really* uncomfortable lumping bullying in the same category as other sorts of conflict. I don’t think it’s the kind of thing where it’s best to just leave kids to it to resolve their own problems. The people targeted are already disadvantaged and vulnerable. That’s why they are targeted in the first place. Refusing to step in is just… I don’t even have the words. It’s uncool, ok? We’re not talking about a situation that can be resolved through basic interpersonal skills, or anything close.

So here’s another thing. I internalize things. I always have. I’m sure everyone does and most people try to learn not to as adults to keep negative messages from affecting us too much. Even now, I am really not good at that. I still internalize negative messages; I do it without even thinking about it. It takes me time and distance and work to disengage, pull them out, see them as maybe a message I should keep outside myself. As a child, I did not have ANY of those skills. Messages got internalized and just stayed there. Which means that I internalized and believed the various messages I got from bullying. Even more so given the fact that sometimes teachers joined in.

In any case, the fact that no one stood up for me, even when things were happening right in front of their faces, just confirmed for me that I must deserve it. I was resigned to my bullying. I rarely fought back at all (though many people have stories of fighting back and getting punished for it. Bullies, defended by the system). To me, the way I was being treated was just the way it was.

At some point in my late teens, not long before I aged out of my church’s youth group, someone made a cruel statement to me in the middle of a bible class. I responded as I usually did – lowering my head and feeling resigned to my reality, but for the first time ever, and authority figure spoke up. The teacher was astonished at what was said and how mean it was, and said so! And the person who had made the comment was equally astonished that anyone would call him on it. That was just the way they treated me, no one had ever told them it was wrong before.

I find that really sad when I look back on it. How, exactly, was I supposed to solve my own problems? Even if the idea is for me to stand up for myself, no one can do that unless they believe they are worth standing up for. And even then, without reinforcement, backing, SUPPORT from people in power, standing up for myself would have been unlikely to have done any good.

When calling people on their behavior is so rare that someone can make it to their late teens without realizing that what they are doing is not ok, something is seriously wrong. So yeah, I think adults need to step in. Peers need to step in. We need to quit telling ourselves “it’s not my problem.” We need to recognize that sometimes people are vulnerable and need help.

 

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More on intersections

Ages ago someone found my blog because they ran a search for “do I benefit from white privilege if I’m autistic.” I wound up noting it down in my blog topics list to get to eventually. Apparently “eventually” has arrived.

Talking about privilege is tough. I’m not good at it  – I hope to be at least somewhat better eventually, but I’m not there yet. But then, I won’t get better at talking about privilege until I actually start talking about privilege, so there you go.

To get straight to be point, before I go off on a ramble – the answer to this question is an unequivocal yes. Yes, white privilege applies when one is autistic and white. Male privilege applies when one is autistic and male. That special combination of straight, white, male privilege exists for straight, white, male autistics. Autistic people of color face an icky combination of discrimination and prejudice that white autistics do not.

Increasingly I think that privilege and oppression really needs to be talked about as an intersectional thing – when the intersections are ignored, the conversation becomes pretty much worthless. Autism sits right at the intersection of disability and mental illness. There are many ways in which this is not a nice place to be. I mean, disability is barely, if at all, seen as a social justice issue. People don’t even bat an eye when disabled people have to go down alleys, use service elevators or that sort of thing to use the the buildings all the rest of us use without even thinking about it. If you bring it up, most people will not think about it in terms of discrimination. Sure, “your entrance is in the rear” is bad for most people, but disabled people? Apparently that’s ok. Or you’ll get a place full of self-professed “egalitarians” bending over backwards to defend paying disabled people less than minimum wage.

Both disability and mental illness are treated in dehumanizing ways. I once wrote a post about wanting to see autistic representation in the media. It was about how cool it would be to see a cool, confident, likable character who happened to be autistic, and about how unlikely that is to happen. But really, in a way, that was setting the bar REALLY low. I mean, the character would almost certainly still be white, male, straight, able-bodied, and have a career. A strong, confident, likable character who’s in a wheelchair, or is too disabled to work, or could work in theory but can’t find a job because they can’t get through the interview process? No, that’s not happening. That’s so far from happening that even thinking about asking for it seems utterly and completely absurd.

Anyway. This is getting a little rambly. Intersections. I am on the autism spectrum. I am female. I have been too disabled to work for many years now (though with meds that might change). I feel incredibly fortunate and grateful and I did not wind up living on the streets – something that was probably more of a risk for me than I care to think about, had aspects of my life gone differently. I don’t drive. There are no people like me on TV, and I face a lot of judgement for being the way I am (that is, when I reveal these things to people who are relative strangers. which is rare, because I don’t like the way people look at me when they learn some of these things).

On the other hand, I am white. I am able-bodied. I can usually hide my differences from random strangers on the street, and just look “quirky” instead. There is privilege in that. No one will judge me because of the color of my skin, no one will make assumptions about me based on the texture of my hair, service people will notice my existence and interact with me without uncomfortable glances at mobility aids. So YES, I am benefiting from white privilege, as well as able-bodied privilege, speaking privilege, sight privilege, cisgender privilege and various other abilities I have that other people don’t.

So, random person on the internet, yes, you benefit from white privilege if you are white, regardless of what other privileges you do or do not enjoy. Privileges or lack thereof definitely intersect and impact one another, but they do not cancel each other out.

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I want this to be real

I don’t often get political on this blog. Not because I lack political opinions or anything – I mean, I have a blog about autism, mental illness, and disability. I think about these things a lot. I think about the consequences of living with mental illness and disability in a society that has little room for us. I think about how easy it would have been for me to wind up homeless at different parts of my life. I think about how my not being homeless is because I had friends and family and people who care about me who would support me, and if I didn’t have those things my life would have turned out VERY differently, but so many people would have blamed me for my circumstances. I think about the injustice of homelessness and how we so often criminalize and punish people for being hungry or having nowhere to go. I just don’t write about it much because, to be honest, I’m still kind of nervous to do so. So instead I stick with nice, safe topics like identity and social skills and making room in a world that has no room (ok, these things are still important and I have no intention of stopping writing about them. they’re just a lot safer than expressing my political opinions).

However, today I heard this thing about Utah. I’m worried it will turn out to be an onion-type thing and we’ve all been duped, but I really hope it’s real. I want it to be real.

That being, that Utah is well on its way towards ending homelessness not by criminalizing being homeless (which far too many places do and I am angry about it), but by providing homeless people with homes. Not just because it’s the right thing to do (which, for the record, it is) or because they’re a bunch of liberal pansies (they are not), but because it is the most economical solution. If sources are to be believed, it’s cheaper than the costs of eating emergency room bills for homeless people. An apartment and a social worker, to help those who are able to work to get work.

Which is kinda right along line with my beliefs in regards to homelessness and people who need help. I see so many people out there say that we are supposed to earn our homes and earn our healthcare and earn our food and all that. And that the earning must come first. Which always leaves me wondering – how can a person earn their right to a home if they have nowhere to sleep? (hint: they pretty much can’t)

Or how can a person earn their access to health care if they are too sick to work? (hint: they pretty much can’t)

Or how can a person earn access to food if they are too hungry to think straight? (hint: actually, I think you know where this is going)

So I hope that this is actually happening. I hope that the homeless and the hungry in Utah are getting the help they need, and I hope more people and places can learn from this and maybe start implementing actual, viable solutions rather than making homeless people into criminals simply because they have nowhere to sleep.

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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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This is not support

There’s a lot of noise being made about Autism Speaks right now, and as usual I’m a little late to the party. I don’t follow them closely so I tend to get my information second hand, and it takes me a while for my thoughts to reach a point where I can put them into words. Especially when it’s about a thing that is provoking a strong emotional response.

Like this thing here.

This. Is. Awful. It’s fear-mongering. It’s really hurtful to autistic people (many of whom have already spoken on the matter).

Are there people and families out there like the ones they are describing? Yes, of course there are.

Do they need help? Yes, very much so.

Do I think we need to do more? Definitely.

Is that the only face of autism? Gods, no.

Is it fair or accurate to take this one segment of an incredibly broad and diverse group and claim “This is autism”? Not even a tiny little bit.

Comparing us to people going missing or falling gravely ill is fear mongering. It’s mean. It hurts.

Saying that we make our parents ill is awful.

And these children they are talking about – many of them will read those words and believe them. They will read that they are missing or gravely ill, that they make their parents ill, that they are a burden.* Is this the message we want to send? Does Autism Speaks even understand, or care, about what they are doing? About the message they are sending and the people who will receive it? This is discrimination, demonization, oppression, and it is coming from the very people who would presume to speak for us.

They’re going to DC to talk about autism, and last I heard have yet to invite a single autistic person to speak. They claim to speak for autism, but how can they do that when there is not a single autistic person in their organization? As a general rule, organizations get to speak for a group only when they are comprised entirely (or almost entirely) of the people in that group. It should be shocking to think of an advocacy group made up of a bunch of people not in the group, yet there are huge numbers of people that support Autism Speaks.

Now, once upon a time a bunch of people complained, loudly, at this lack of autistic representation. Autism Speaks did eventually respond by taking on one, and only one, autistic person and sticking him in a committee. Yeah, a committee. The token autistic. They then proceeded to ignore him. Yesterday Mr. Robison resigned in disgust, finally realizing that despite the fact that their tagline is “it’s time to listen” they, themselves, do not listen. They have had years and years to learn to listen, and have, with their most recent “call to action” proven that they have not changed a bit.

Their history of fear mongering and demonization continues into the present and it IS NOT OK.

I support helping people on the autism spectrum. I support therapies and assistance and providing us tools to be able to learn and communicate and become independent – whatever that means for any given individual.

I do not support Autism Speaks, and I feel the need to say that publicly. What they are doing is not ok. They need to stop. They need to listen. They need to learn.

Sadly, at this point I doubt they ever will.

*When a child walks up to their mother and says “Mom, do I make you ill?” because of what a “support” group said, something is seriously wrong.

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Oh, I didn’t mean YOU!

There are some things that really get on my nerves. The “I didn’t mean YOU!” behavior is one of them.

I’m sure you’ve run across it. You may have even done it at some point. There’s a basic script:

Person Being Offensive (PBO): All [noun] are [adjective]!

Offended Person: Um, I’m [noun] but I’m not [adjective]. It’s kind of offensive that you said that.

PBO: Oh, I didn’t mean YOU! I just mean all those other [noun]s! You know, the ones that are all [adjective]!

I have seen and participated in this script WAY more than I’d like. I mean, I’d prefer it if I had never seen this script at all and had no idea that sometimes people do that. But sadly, I do know. All too well. I see it in regards to religion, disability, mental illness, sexuality, gender identity, autism, even computer preference. Honestly, pretty much anything that can be pointed to as a difference will be subject to broad, sweeping, inaccurate and offensive generalizations.

And when someone in one of those groups stands up and says “um, I’m not like that and it’s not cool that you said that” the response is rarely “oh gee, I just stereotyped a group of people, maybe I should re-think my position.” No, the response is usually defense and justification. And if they happen to personally know someone in that group of people they just generalized about, they’ll throw in an “I didn’t mean you!” for good measure.

Seriously. Cut it out.

When you say “All [noun] are [adjective]” you ARE including everyone in that. Backpedalling with “I didn’t mean you!” doesn’t make it any better. I am not interested in being the special exception, the one amazing member of a group I’m in that is somehow not harmful/stupid/insane/whatever else you’re saying. If you say “all autistic people are r-word!” you’re including me in that. And my friends. And my family. There is no possible way to say that and not be incredibly offensive.

I am female. I am androgynous. I am on the autism spectrum. And I am NOT your stereotype. No one is.

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Filed under rant