Tag Archives: that’s not helping

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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On being analytical

This can be great, but maybe only if you know you’re doing it and it’s on purpose.

Story time!

So once in a while I travel, most recently by train. One of the things I enjoy about travelling is that it very nearly guarantees conversation with a complete stranger, while stuck inside some form of metal tube that is going fast. Oddly enough I tend to really like this sort of thing (or maybe it’s not so odd. I do crave connection with people and get it only rarely). On my last train trip I wound up sitting next to a Lutheran pastor and having a most enjoyable conversation. One thing that we wound up talking about more than a little bit was autism and Asperger’s. What also came up was my tendency to be analytical. Apparently it shows through, even to a complete stranger in the middle of the night whilst in a metal tube that was going fast.

He commented on this fact. A type of comment I have gotten from many people throughout my life, who typically mean well but don’t get it.

That is, he said that maybe sometimes I’m too analytical. That there are times when it’s best to just go with the flow and stop analyzing for a while.

Now, this can be true for me if I’m doing a solo thing. If I’m doodling or making yarn or crocheting, it can help to relax my brain and let my hands do what they do. Of course, I am able to relax and let my hands do the work because I’ve already put time into making sure my hands know what to do, and my brain is still always sitting ready to jump in if my hands get confused. And sometimes, like when I’m writing, my hands seem to know what’s going on better than the talking part of my brain, but in a way that’s just thinking with a different part of my brain. Still, I can stop being analytical in those types of situations.

However, people don’t tend to mean it that way. They mean it in social situations. Even worse, they mean it in group social situations. People really believe that my constant analysis must get in my way, and I’d be better off if I would stop and just “go with it.” The problem is, while this might be true for them, and might even be true for most people (I wouldn’t know), it most definitely is not true for me.

Telling me to go with the flow assumes that I can somehow naturally detect the flow, the same way a person detects the flow of water while standing in a stream. I can’t. It does not work that way for me. Telling me to go with the flow assumes that I already know what to do and how to respond to that flow that I’m supposed to detect, the same way my hands know how to hold a hook or spin my spindle. Except I don’t know what to do or how to respond to that flow that people keep insisting is there.

So instead I engage my brain. I watch what people are doing and saying, I watch what I am doing and saying, I watch how people respond to what I do and say, and how they respond to each other, and how I respond to them. I analyze. I work it out as best I can, and I do it all very consciously. It’s not intuitive at all.

This does mean that I respond and adapt more slowly than other people. So they see that I’m doing all of this analysis and assume it must be slowing me down and tell me to stop. What they don’t see is that if I were not analyzing the way I do, I would simply be at a standstill. Or maybe I’d be going off in some other direction entirely, unaware of this “flow” that’s supposed to be taking me along with everyone else. Or I’d just go in circles, or flail, or whatever else.

I do this in most social situations. It’s one reason (of oh-so-many) why groups are so much more difficult than one-on-one. Groups have far more variables and the social dance is far more complex than one-on-one socializing. Even in groups, I strongly prefer to find one or two people who are sufficiently similar to me to just sit in a corner with and talk to. I really dislike the social butterfly dance and have no desire to participate in it. It’s stressful and even my analytical self can’t keep up with all the cues and subtle shifts and changes that keep happening.

So yes, I’m analytical, and I’m not going to apologize for it. In fact, I’m proud of it. My ability to analyze and logically work my way through things has carried me further than I’d have gotten without it. Even in this post while I was using metaphors, I was thinking about the metaphors and both visualizing their literal meaning along with thinking about the figurative interpretation that I was intending and seeing how well they matched up. Because that’s what I do.

I very much doubt I’m the only one.

And to people who want to tell me to stop being so analytical and just go with the flow – you’re not helping. Please listen to me when I say I don’t work like that. Don’t try to tell me that I must be wrong because surely I work the same way you do. Recognize that I’m different. And to the Lutheran Pastor whose name I don’t remember who conversed with me in the metal tube that was going fast, thank you for listening. You were awesome.

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“See the person, not the disability”

“See the person, not the disability” is a phrase I see around sometimes, often said by disability advocates. I believe their intent is to encourage people to not judge a person on their disability, but see them as a whole person. I will admit, there certainly is a problem in our society where many people will see someone with a disability, and simply stop there, failing to see anything else.

That said, I don’t like this phrase.

First of all, and most glaringly, it sets up a false dichotomy. It implies that we must see either the person OR the disability, but we somehow cannot see both, and that if we are seeing the disability we must, therefore, not be seeing the person. How insulting. Now, as I said, I do recognize that there is a problem with just this sort of thing out there. However, I do not believe the solution is to see the person instead of the disability. I believe the solution is to see the person as well as the disability. Disability is real, it’s there. Pretending that it’s not there does not actually help anyone.

Personally, I cannot be separated from my Aspergers. It is simply impossible. So to view me as somehow separate from my Aspergers, seeing me instead of seeing Aspergers, is to, in fact, fail to see me. By this I don’t necessarily mean that I have to go announcing that I’m an aspie to everyone I see (though personally, I do tend to be very open about it), but more that I have a large number of quirks and oddities that can be attributed to my being on the autism spectrum. Whether a person conceptualizes them as part and parcel of my being an aspie, or simply as a bundle of quirks does not matter so much as the fact that they are there, and ignoring them (seeing “me” instead of them) simply means that they are failing to see who I really am. This is especially problematic given that many of my oddities have a not-insignificant impact on how I interact with people.

Random story time! Not long ago I went to a restaurant with a few other people to have some social time. We headed to a table against a wall, but then two of the people I was with slid into the seats by the wall, leaving me to sit with my back both to people and to a flow of traffic (servers, people moving around, etc). For this to make sense you’d have to know that I really hate having people behind me. In a restaurant I make a point to sit with as few people behind me as possible, and tolerating people-flow behind me is more or less impossible. I am embarrassed to admit that at the time, I simply froze and not-quite-panicked as I tried to sort through my options. Sit where I know I won’t handle it? Go somewhere else to sit? Ask if I could please sit where one of them were sitting? One of the two people then noticed that I was looking a bit freaked out and asked if I’d like to sit where they were sitting, and I gratefully accepted. I do very much wish I had managed to handle the situation more gracefully and have since been trying to figure out templates on how to handle that sort of thing if it happens again in the future. However, it does rather illustrate that you can’t really see me without also seeing my strangeness, at least in anything but the most superficial of interactions (and sometimes not even then). It is simply impossible to see some non-existent idea of “me” without also seeing my aspie oddities, so really, don’t even try.

Ok, now I want to talk a bit about that graphic I used at the top. Not only is the wording a problem, but so is the picture. We have an able-bodied person standing (presumably what we are supposed to “see”), with people in wheelchairs as shadows (presumably what we are not supposed to “see”). Here’s the thing – everyone is a person, regardless of their ability to stand. I think they are trying to say person vs. disability with that graphic, but what they are actually saying is able-bodied person vs. person in a wheelchair. Apparently “person” directly means able-bodied/not-disabled. Seriously uncool. Just to hammer it in more (hopefully excessively), imagine if it were another group on that graphic. Such as “see the person, not the color” showing white people with shadows of various ethnicities. That would never be ok, because it would be implying that “person” means “white.” Similarly, implying that “person” means “able-bodied” shows prejudice and is not ok.

People are going to see me. That includes the fact that I am an aspie and all of the ways that makes me who I am, from the frustrating to the wonderful.

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Touching

I posted before about things people can say that Aren’t Helpful. Getting a touch more specific, one of those pieces of not-so-welcome advice I’ve gotten is “let people touch you.”

Ok, I sort of get it. I know that most people like to have those little forms of social touch like shaking hands and whatnot, and it makes them feel more comfortable around strangers and such. It gives a sense of connection. I do know all that. I know that it’s expected in social situations, and I know that a refusal on my part can seem weird or rude.

All that said, NO. Even if I was totally ok with random strangers grabbing me, I have sensory issues. There are ways that are ok to touch me and ways that aren’t. The ways that are not ok to touch me are rather odd and not the sort of thing people can be reasonably expected to guess. This means that people generally need to be trained on how to touch me, and they need to accept my boundaries. If I don’t get those things then touching isn’t cool.

On top of that, I am VERY possessive of my body. It’s mine, dammit, and I get to say what happens to it. For the record, I am also against forcing children to hug people they may not want to hug, because all it does is teach them that they don’t have the right to say who gets to touch them and how. That is one messed up message. I say that I DO get to say who gets to touch me and who doesn’t, and if I’m restrictive about it, that’s my right.

Some of the problem is phrasing. If someone were to say “socializing goes more smoothly if you can or will let people touch you,” that would be unnecessary and a tad condescending (I know that already), but not horrendously bad. But when people simply say “let people touch you,” they are essentially giving me an order without taking into account the various reasons I may have to not let people touch me. They are, intentionally or not, taking steps to remove my body autonomy from me, and that is Not Ok.

It’s great if you want to be helpful, but please think about what you’re really saying and how your words might come across.

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Just Try Harder

 

Sometimes people say rather hurtful things to me, and I’m sure others, with the best of intentions. They’re trying to give advice and really believe they’re saying something helpful, and somehow just don’t understand how hurtful it can be to hear them. Many of them can be generally classified as exhortations to just try harder.

All we need to do is just put in more effort, or take these classes, or see that type of therapist, or avoid those foods, and if we just worked at it, we’d be fine!

Thing is, it always seems like it carries the implication that I must not be working at things already, and it definitely carries the implication that I’m not working hard enough. It also implies that whatever it is they are encouraging me to fix can be fixed, so the fact that my aspie-ness is showing is somehow my fault. As “helpful advice” goes, I find it insulting and hurtful and not helpful at all. Especially because that particular brand of advice almost never comes when I’ve actually asked for advice. It seems to reside almost entirely in the realm of unsolicited advice, from people who think they know what’s wrong with me better than I do.

Here’s the deal. I do work. I work hard. But I don’t necessarily work hard at the things people think I should work hard at. I work hard to be able to walk up to an associate in a store to ask for help. I work hard to remember to reciprocate social questions. I work hard to deal with my sensory issues. I work hard to increase my mobility so I don’t hide in my house away from the world all the time. I work hard to talk to people I don’t know.

I do not work hard to hide my stimming, even in public. I only sort of work hard to hide my awkwardness in social situations. I do not push myself to keep my ASD hidden away, as though it’s somehow shameful or wrong. Yeah, I will apologize and try to improve if I am unintentionally rude or make a legitimate social slip, but I will not apologize for being strange or quirky or sensitive or twitchy or any number of other things that make me odd, but are not actually wrong.

“Trying harder” will not make my social awkwardness go away. “Trying harder” will not magically let me learn all the social protocols I have yet to learn. “Trying harder” will not cure my sensory issues. I already try damned hard.

I refuse to “try harder” to pass for normal. I pass or I don’t pass. I won’t apologize for who and what I am.

All of which means that “just try harder” is both useless and insulting, and not something I should have to hear from anyone. I can appreciate someone trying to be helpful (sort of) but please pay attention to the sorts of things you say, and what they may sound like from the other side.

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