conuly: (Default)
What do you know! If this keeps up, we may get a white Christmas for a change.

Removing DRM increases sales

We are very, very bad at washing our hands, says science

Judge's word on NSA program won't be the last

If this judge doesn’t buy the legal basis for the NSA’s intrusive phone snooping, no one should.

Study finds evidence of domesticated Chinese cats 5,300 years ago

A brief history of African click words

Autism hits Somali kids harder, University of Minnesota study finds

Freedoms for Saudi university girls end at gates

The NSA: An Inside View [blog-post]

The Odd Rise of Anonymous Sources

Paul Dini Tells Kevin Smith about Hollywood’s Fear of Girl Cooties

Barbie and Elevator Guy: science and sexism

(Yes, I know it's old.)
conuly: (Default)
Some NSA Officials Favor Giving Snowden Limited Amnesty For All The Wrong Reasons

Feds joins battle on citrus disease

Obama to review changes in spy policy

Tech giants team up in anti-snooping effort

On the one hand: good for them! On the other, I am even more uncomfortable with corporate influence in the government than I am with the NSA, and that is saying an awful lot.

The Return of the Welfare Queen

Federal judge declares Utah polygamy law unconstitutional

This Ethiopian village has gained wealth, but has bred hostility

Because they aren't Christians or Muslims, basically.



As many commenters point out, not all of the "black" people on that modified Guess Who? board look unambiguously black. So there's that as well.

Surprise! Charity Buys 21 Sacred Katsinam for Hopi at Auction in Paris

Scientists discover double meaning in genetic code

How cholera evolved to be one of the deadliest diseases in history

This study shows how a good metaphor can change the world

Inside the Rainbow Gulag: The Technicolor Rise and Fall of Lisa Frank

The second operating system hiding in every mobile phone

A Pen That 3-D Prints Bone Right Onto Patients

In Ukraine, skepticism greets new vow on E.U.

Kindergartener signs song for deaf mom. It's the most adorable time of the year!

Teacher accused of feeding autistic student hot sauce rehired.

Either Florida has a serious teacher shortage or they really hate disabled kids down there.
conuly: (Default)
6 year old accused of sexual harassment

A pair of Philadelphians bringing their style of pretzel to Brooklyn

Breastfeeding mom kicked out of Conn. court

Mars Curiosity rover finds life-supporting chemicals

200,000 people apply to live on Mars

Bernie Sanders Introduces New Health Care Legislation: Medicare For All

Nearly Half of All U.S. Schoolchildren Live in Low-Income Households

An Organic Greenhouse Run by Farmers With Autism

Remote classroom illustrates China's education challenges

Big Brother spying is reaching scary levels

Storage Tips for Winter Vegetables

What Happened On Easter Island — A New (Even Scarier) Scenario

US job openings reach 5-year high, a hopeful sign

It seems to me that I've spent my adult life listening to people say "no, really, the economy is doing better now!"

Girl in the Shadows: Dasani's Homeless Life

This is a long, 5-part article. I wasn't going to post it when I read it, because it is so very depressing in parts, but everybody else seems to be passing it around and I'd rather be a little depressing than very behind the times.
conuly: (Default)

I thought we already knew that! Didn't we already know that? I'm pretty sure I already knew that, at least.
conuly: (Default)

And of course, we have all heard by now that autistic children are even at only a few months old making less eye contact than their typically developing peers. ( This is not, of course, deterring the anti-vaxxers at all, and all sorts of people have jumped out of the woodwork to say lack of eye contact is caused by smart phones (and the moms that use them instead of looking at their kids), strollers (which face forward so that moms don't have to look at their kids), bottle feeding (because all moms prop the bottle while playing on their cell phones instead of looking at their kids), the Internet.... Well, point being, dads aren't getting any of this shit. I don't get it.

Over at the NYTimes version of that article you have one person basically proclaiming that eye contact is the crux of autism and that it must must must be normalized because "lots of people can't get a job because of eye contact". Now, I could buy that argument when it comes to speech (it is good to be able to communicate with others) or meltdowns (everybody prefers to have some way to deal with sensory overload and other issues before it gets to that point), but eye contact? How about this? How about we send every last hiring person a copy of the ADA and point out that few jobs actually require eye contact and ask them to stop being discriminatory already? Sheesh. Eye contact. It's not actually the be all and end all of human society.

Children Who Have Autism Far More Likely to Have Tummy Troubles

(Adults with autism far more likely to have grown out of the word tummy.)

You know, I thought we already knew that!
conuly: (Default)
She was very excited about it, because, really, who isn't excited about the prospect of being gainfully employed?

Her autistic son gets home from school early one day a week, and she asked for accommodations for that day, maybe the ability to work from home, so she could better care for him. They rescinded the job offer, and now she's suing as a violation of the ADA and the Civil Rights Act.

Now, which big company am I asking you to boycott right now? Who could possibly act in such a stupidly heinous manner?

Take a guess, and then I'm sticking the answer under a cut.

*drumroll* )

Comment if you were surprised. You'll get a consolation cookie.
conuly: (Default)
PSA: Your Default Narrative Settings Are Not Apolitical

An Asperger's Guide to Neurotypicals

And a DW friending meme. I've been making a concerted effort to read my reading page there lately, that's an improvement. You know how slow I can be about change.

As a bonus, I also have this link, 6 Ridiculous Lies You Believe About The Founding Of This Country.
conuly: (Default)
Now, in the comments there are many people asserting that "of course" most autistics are "low-functioning". They say this, but they never once attempt to prove it. They must think we're too stupid to notice.

Quite aside from the never-ending discussion on how to define those terms and whether or not they're even valid, there really is no proof of that claim. When people say that, they're making it up. They really are. Don't buy into claims like this until you check it out yourself. As I get older, I find that the more often something is repeated, the less likely it is to be true, and this little gem is no exception.

Read more... )
conuly: (Default)
Now, in the comments there are many people asserting that "of course" most autistics are "low-functioning". They say this, but they never once attempt to prove it. They must think we're too stupid to notice.

Quite aside from the never-ending discussion on how to define those terms and whether or not they're even valid, there really is no proof of that claim. When people say that, they're making it up. They really are. Don't buy into claims like this until you check it out yourself. As I get older, I find that the more often something is repeated, the less likely it is to be true, and this little gem is no exception.

Read more... )
conuly: (Default)
Some autistic brains really are wired differently

What child prodigies and autistic people have in common

This latter is not all that well written, I think. Of course, I'm inclined to find the "all aspies are brilliant!!!" meme truly irritating, so "all brilliant people are autistic!!!" isn't much better.

Two of the top-level comments, so far, are the sort that ignore everything said in the article and only go nattering on and on about person-first language. One of them, upon being corrected, still goes "Oh, but, you know, not all people with autism will ever be able to talk!" And if they did, they'd automatically agree with her? The arrogance there is astounding, and far more annoying than the original "person first language totally rocks!!!" comments.

I'm thinking I'd be far less annoyed by the whole concept if the people insistent on it would ever, ever say something of content instead of their vapid, sanctimonious little comments.
conuly: (Default)

For decades, the Judge Rotenberg Center in Canton, Massachusetts has been torturing and abusing people with disabilities in the name of treatment.
Residents are subject to electric shocks, food deprivation, prolonged restraint and seclusion, and forced witness of these same tactics used against other residents.

This video of Andre McCollins, then-eighteen, who has behavioral and mental health issues, has been sealed by the courts for the last eight years. Yesterday, it played in open court during his trial against the Judge Rotenberg Center.

I haven't watched the video in question. I've heard enough about the JRC that I felt that I didn't need to do so. I would like to keep my food down today. So I'm just going to assume it is triggering and move from there.
conuly: (brain)
The Autism Wars

Read more... )
conuly: (brain)
Scientists have linked rare gene mutations to a heightened risk of autism. But only for SOME individuals.

The comments, of course, are full of people going "VACCINES!" so really, when it comes to eugenics, we've still got nothing to worry about.

Read more... )

New data show autistics' superiority at some cognitive tasks

The comments THERE are absolutely a mess, or they were when I checked them.

Autism Awareness is Not Enough: Here’s How to Change the World

With autism, no longer invisible
conuly: (Default)
We've been having spotty internet lately, and have finally tracked down the problem: My router, which was cheap when I bought it, is eight years obsolete. I need to get a new one. Well, they can't possibly have gone up in price, so it won't break the bank, I don't think.

Gave away a kitten today. Apparently, this was Evangeline's favorite kitten. Tough for her. I didn't say it to her face, but I'm sure he'll be happier in a home with three doting grown-up people who are at home all day than in a home where his needier siblings hog most of the attention and the only one who dotes is six years old and still thinks he likes being hugged. (No, I don't let her squeeze kittens around the middle, even though she wants to.)

Anyway, on to those links!

Israelis Facing a Seismic Rift Over Role of Women
There are pictures

Read more... )

New Definition of Autism May Exclude Many, Study Suggests

Read more... )

Here's an article about segregated housing for vegetarians only in Bombay

And one on Bastøy, a very free prison in Norway

State notes alarming spike in starvation of adopted children. They list the signs of potential starvation in a child, but of course it's worth noting that with adopted children, many of these psychological signs (like hoarding food or bolting it down quickly) could be a sign that they went hungry BEFORE being adopted.

Report: Medical Marijuana Laws Reduced Traffic Fatalities

Texas doctors lead open-notes movement

And finally, BSG (remake) as an 8-bit RPG!
conuly: (Default)

I never had to deal with that from teachers nor, for the most part, family. The only thing similar is my mother's complaints that when I spun a mardi gras necklace on my arm, I made her dizzy - but even then, she didn't care so long as she didn't see me.

My mother's comment once, when I complained about the judgment inherent in saying autistic children don't "play properly" with toys but may "just" line them up was, before I could get to the point, a vehement interruption of "But that IS playing!" That's certainly how I played as a child much of the time.

Sometimes, I love my family very, very much.
conuly: (werewolf theothernight)
When I leave a long, thoughtful review on how a certain book sends the message that it's okay for autistic people to kill themselves because, after all, it's not like we fit in, there are a number of correct responses to that.

Not a single one of those responses is "Please use person first language!" Not even as part of another response.

Because seriously? Fuck that shit right there. This is exactly the problem! If you can't remember which people are really people because we don't all talk funny? That's all on you. That's not my concern. Maybe if you didn't think we all had to talk funny first you'd be more on top of having people love and accept their autistic family members.

I am done. I am no longer even going to reply to people who think it's oh-so-crucial to call me out on my use of the word "autistic" when that word does, in fact, apply to me.

(And it really bugs me because I couldn't care less if you use person-first language or not. This is me, not caring. But do I get the same respect and consideration about my language choices, when I promise you I've thought more deeply about it than they have? No, no I do not.)

Tomorrow maybe I'll feel bad for being snippy towards this person, but honestly: STOP telling people to use person-first language! It's really not God's gift to human discourse.
conuly: (werewolf theothernight)
that Arthur just had a show on Asperger's!

George meets a rabbit with Asperger's, and after a few rather pathetic comments about "the piece of the puzzle" the show goes on.

Read more... )

There's also a "Word From Us Kids" that was edited from that episode, despite it being otherwise complete. You can see that clip at the end of the video here.
conuly: (werewolf theothernight)
somebody else is bound to pipe up "OMG! Use person first language!"

And I'm sure I've shared my opinion of person first language with you, but to recap:

It's counterproductive and, ironically, stigmatizing.
It's insulting in its very premise. (If you need to speak funny to remember that people are people, the language isn't the problem.)
With regards to autism, it's just plain silly. (How is changing my brain or yours going to keep us the same person? Absurd!)
Anyway, there probably are better things to worry about.

The last is why I rarely say anything. Honestly, silly though I find PFL to be, I don't really care. If you prefer to use it, go for it. If it can apply to you, and you want me to use it, I'll try to remember when talking to or about you. (But not about me. There, I draw the line. I think that's fair.) So long as you're being polite and respectful and understanding, I don't particularly care what words you use. I'm not going to play language cop unless you're really being offensive, in which case I'll either point out that that word is inappropriate (if you probably don't realize) or yell at you for having no manners (if you probably do).

However, if you pipe into somebody else's discussion a sanctimonious little comment about how They Are People, then all bets are off, because that's just really annoying.

Here is an editorial about a woman whose autistic child stopped speaking at two.

The language used within the editorial is pretty offensive, I'm thinking, so I'm tucking it behind a cut: )

So, dozens of comments down the line, the whole conversation has dissolved into "OMG! VACCINES!", I've left two comments or so on the subject, and here's one person who feels it's oh-so-necessary to point out "they are children* first, not a disability".

But, you know, none of the OTHER rude things said concern her at all! Talk about missing the forest for the trees!

(Also, you don't have to read the comments (and you probably don't want to, it's all same-old, same-old, very boring), but you could be a big help by commenting that you're an autistic adult, especially if you happen to be in your 50s or older. Some people are saying quite certainly that you simply don't happen to exist at all!)

*Yeah, I know. See my parenthetical.
conuly: image of Elisa Mazda (Gargoyles) - "Watcher of the City" (watcher of the city)
First, apparently the Theater Development Fund is running special Broadway performances for autistic children and adults (they said that specifically, with that wording) and their families.

It sounds like a really great program.

Now, you'll notice that in the list of organizations they thank, a prominent one isn't mentioned. YOU know which one. But I wouldn't expect them to be, first because this isn't really AS's thing, and second because, you know, they're evil. Or maybe they were deliberately excluded, a sign of good taste if you ask me.

And in the more awful news, here's a video of a bus driver and an aide beating up on an autistic student. They've been convicted but not sentenced. Why people who hate kids or just aren't good with them go into professions where they have to interact with children, I don't know.


Half of them are "oh, that boy was violent, what do you expect them to do, he shouldn't be on the bus if his parents can't teach him to behave" and the other half are "oh, those terrible fatties from the ghetto should be shot". It's a sad day when both sides are obnoxious.
conuly: (brain)
your life is just events in between telling other people that Autism Speaks is evil? (EEEEEEEEVIL!)

On that note, I found a very nice article the other day about the family of an autistic boy who just won a case against the school district for denying their child services - and all of the dozen and a half comments were supportive of the family! One or two mentioned school districts wasting money... by not doing what they were supposed to in the first place and dragging out long court cases they knew they were going to lose!

I'm sorry I lost the link, but it was a very pleasant surprise. The comments were actually worth reading!
conuly: "I'm not a puzzle, I'm a person" (puzzle xiggy)
Could places like Silicon Valley be breeding a whole generation of kids with autism or Asperger's syndrome?

Because I distinctly remember talking this subject to death only about five years ago. And, uh, three years before that as well. And last year, maybe?

And yet, the comments (don't read the comments) are acting like this is a wildly new proposition, and as it is SOOOOOOO new they are deeply, deeply suspicious of it. (Especially because it doesn't mention vaccines at all, but that's all right, lots of people are willing to promulgate equally absurd non-vaccine hypotheses as well. Maybe people have too much sex! Maybe they use too many birth control pills! Maybe it's artificial sweeteners! Wait - could it be vaccines??? Or some sort of hormonal imbalance that I'm making up right now?

And there's always the eugenicists....

(Do NOT read the comments!)

As far as inheriting autism goes, I've said it before, but to recap:

I'm pretty sure both parents were/are what's called "the broader autistic phenotype". One day I have to explain how I grew up, our whole family functioning as a little self-contained unit that didn't particularly want or need anybody else. (This was actually a great way to grow up, but by my teens I could see that other people didn't live quite like that!) And I'm pretty sure both grandmothers were/are as well. And we ALL know my mother's father was autistic, that's not even a possibility that he wasn't.

Now, my mother swears that she knew about me from the time I was a baby. And I believe her - I remember being dragged around to doctors as they tried to get me diagnosed, to no avail. (Apparently, bright children who could talk just didn't get autism diagnoses back then. Remember this the next time somebody points to their bright, verbal child and says "This child is autistic because of vaccines, it's an EPIDEMIC!" Very often when people do, I reflect that the kid is no different than I was at that age.)

At the same time, when I started researching the subject (after I admitted it to her), she didn't want to talk about it for a while. She thought I outgrew it or it "wasn't that bad" or whatnot. How she could hold both views simultaneously I do NOT know, but there it is.

She's gotten better about it, and recently she randomly brought up that a friend had said that if I wasn't "so aspie" she'd think Jenn was on the spectrum. (I don't see it myself, but possibly for the same reason my mother... wait, I'll get to it.) And that brought up the whole issue, again, of who in the family might be anywhere near the spectrum at all, and my mother, at the end, scoffed "C'mon! If that's all your criteria, half the world must be autistic!"

And I think I finally figured out the issue here, and I pointed it out to her - if my idea is correct, and there's a heck of a lot of it floating around in her family and the people she's chosen to associate with (including, y'know, her husband my FATHER) - she doesn't know what normal is. She thinks her family is the epitome of normal, but you know, her cousin Frances thought Schlomo was a normal name! (And it is to some people, just like we're all normal to my mom.)

That's a tangent, but it's a bit more interesting I think than the link, which, y'know... isn't really news.
conuly: (werewolf theothernight)
but apparently not, as this editorial on a business that hires autistics deliberately is only a few days old.

Weird how that happens. Nothing really new here, it's not saintly to hire disabled individuals - heck, it's probably the law where you are, if not to seek out disabled people to hire to at least not discriminate against them and to give reasonable accommodations.
conuly: "I'm not a puzzle, I'm a person" (puzzle xiggy)
Behind the cut is a list of companies that give to Autism Speaks. If you have any information on OTHER companies, pass it to me and I'll pass it to the person I got this from.

Read more... )

The ThinkGeek situation has a happy update!

Oh, hey!

Apr. 2nd, 2011 07:46 pm
conuly: "I'm not a puzzle, I'm a person" (puzzle xiggy)
It's time for my yearly poll!

Poll #6477 Autism
Open to: Registered Users, detailed results viewable to: All, participants: 15

Are you aware of autism?

View Answers

15 (100.0%)

All done?

Whew, now I don't have to mention it again for a whole 'nother year. (Well, assuming nothing tragic happens in the world of autism, like autism speaks continuing to exist or something like that.)


Jan. 10th, 2011 02:55 am
conuly: "I'm not a puzzle, I'm a person" (puzzle)
Well, apparently closely-spaced second-born children are more likely to be on the spectrum than first-borns or those spaced further apart.

The comments are a morass of "FOOD COLORING! DOES ANYBODY REALLY KNOW ANY GRANDPAS WITH AUTISM???" (Hi, I do!) and "TV WATCHING! THAT STUDY WAS SOOOOOO WELL DONE!" (No, it wasn't!) and "OMG, VACCINATIONS, BIG CONSPIRACY!!! (Uh-huh, you keep saying that!) but this one takes the cake:

There was study conducted to understand the risk of autism based on genealogy. The researcher chose to examined Amish people since they live in a closed society. In case you didn't know, roughly 65% of Amish have the same surname. When they first came over, their were about 300 families. Since their lifestyle isn't that appealing they rarely get new blood. They try not to get closer than 3rd cousins, but still they all pretty close. This of course increases the chance of defects greatly. So reason dictates they would have a greater percentage of autistic children.

S/he goes on from there with the same-old, same-old "Oh, the Amish don't vaccinate and they don't have autism and it's so not a coincidence!" line.

To all this, I can only say the following:

A. Logic doesn't work like that.
B. Genetics doesn't work like that.
C. YOUR PREMISES ARE ALL WRONG! Why do people have this asinine idea that the Amish don't vaccinate, or that they don't have any autism? It's not because they bothered to look up the facts for themselves - you'll notice this person has no idea what study or researcher they're talking about. No, they just repeat the same old tired lines that were worn out the first day anybody ever said them. (And they weren't true then either.)

Oh, and she also goes "As you may know, Autism was unheard of prior to 1900 (right around vaccines were widely introduced). Though many would simply say that it existed but people were simply unable to spot it back then, riiiight. "

That doesn't even merit a response. I mean, I have a few (and they're longer than two words!), but she doesn't deserve the energy.
conuly: Discworld quote: "The new day is a great big fish!" (fish)
As an aspie who attended Stuy, I find the unstated assumption that the kids at Stuy (and those other elite schools) don't overlap at *all* with the, uh, "special needs crowd" to be, if not quite wildly hilarious, at least quietly amusing.

However, lest we go too far the *other* way - no, not all supergeniuses are autistic, and no, not everybody at Stuy is on the spectrum. (When I was there I'd say the percentage wasn't any higher than in the general population - but it wasn't lower than the general population either, of course.)
conuly: "I'm not a puzzle, I'm a person" (puzzle)
But maybe I did.

Now, the article is ostensibly about how children are less likely to be fooled by a certain optical illusion. So far so good, but then you get to this paragraph:

Other investigators have noted that children with autism don’t succumb to visual size illusions, consistent with the idea that autism involves an excessive focus on details. But visual context largely eludes all young children, not just those with autism, Doherty asserts.

At the risk of making a pun in bad taste, let me say that this is just typical. Here we have an autistic strength (not being easily fooled by misleading extraneous information) and yet people insist on describing it as an unalloyed negative (an "excessive" focus on details?)

Man, that is just annoying. This sort of thing can make a cloudy day seem gray and dreary instead of potentially snowy and wonderful. And it's a pity because I got the link to that first article after reading this cool article about how a class of kids studied bees and got their research published in a peer-reviewed journal.

Telling quote? "“It’s so different from other science-education programs, where the aim is to learn facts,” Lotto said."

Yes! This is something that's been bugging me about my own science education (and, by extension, the nieces') for the past several years! Science isn't just a bunch of facts piled together like rocks! You can learn the facts when you're grown, or you can look them up (when does it really come up how many planets are in the solar system?), but what you need to learn as a child is how to think and figure things out scientifically! Not how to pass a multiple guess test or what King Phillip can order.


Nov. 2nd, 2010 01:57 pm
conuly: A picture of the bridge at night. Quote: "Spanned with a poem" (poem)
One on 25 years worth of dryer lint. WOW

On wasting food. Or not.

On a sorta early EARLY intervention for potentially autistic toddlers.

Read more... )

On learning to like fruits and vegetables. I've never understood the hype about how "hard" it is to eat sufficient fruits/vegetables. Some of that hype, admittedly, is beverage ads (so... yeah), but a lot of it isn't. How hard is it to eat an apple with your breakfast (one or two servings of fruit), an orange and half a banana with your lunch (one serving each) which also has a small side salad (half a serving), a salad at dinnertime (another half a serving) and a vegetable side (another serving - hey, now I'm over 5 servings, and I haven't even had any snacks!), seriously?

Could be worse. I've seen an ad for some product full of vitamin C because it's "so hard" to get your RDA by drinking a gallon of OJ daily. *headdesk* Vitamin C is so prevalent in EVERYTHING that you can't even get scurvy unless you really try!

Read more... )

Explaining the 2nd Avenue Subway to first graders.

Read more... )

Apparently, some genius has decided breast pumps do not merit a tax break.

Read more... )

The return of Pee-wee Herman

Read more... )

Is Candy Evil or Just Misunderstood?

Read more... )


Oct. 6th, 2010 02:01 pm
conuly: "I'm not a puzzle, I'm a person" (puzzle)
One on one of Kanner's first diagnoses.

One on how Sharron Angle, whoever she is, apparently thinks that autism doesn't exist. Don't vote for her.

And... an interview with Ari Ne'eman!

There aren't very many comments to the last one, so I went ahead and read them. They're pretty varied... of course, there's the obligatory "Well, he's obviously incredibly high-functioning so he should shut up because what does he know???" which... just always pisses me off, actually, but what's new to be said there?

But here's one which is so wrong that I felt I had to crosspost it and pick it apart for your reading pleasure:

If you were interviewing a Black person about Black civil liberties would you write a line like this?

“Why are some N ggers up in arms about this?”

Personally I think “Aspie” if far more derogatory than the N-word (which has its origin in a simply descriptive label about skin colour).

“Aspie” on the other hand is the diminutive of a pathological condition and not a label I want to be stickered with.

1. No, I imagine that if he were that clueless he'd write the word out in full.

2. Personally, I think that you don't have the standing to speak for everybody on the spectrum. Some people dislike the word "aspie", yes, but others do not, or even embrace it. It's not widely recognized as a slur, is it?

3. Aaaaand... I love how he manages at the same time to brush aside accusations that maybe saying "the n-word" is rude. "Well, it just starts off talking about skin color!"

4. Diminutive of a pathological condition. I love it! Here's this whole talk about neurodiversity, and all he gets out of it is that Asperger's is a "pathological condition". I'm thinking that may be a little bit more offensive than what term you use, but we're just building up to my ultimate question....

5. Did he just ultimately compare being black to having a pathological condition? Or, worse, he said that "aspie" is worse than "nigger" because, after all... etymology!

Sometimes, I just can't believe what I read.
conuly: "I'm not a puzzle, I'm a person" (puzzle)
When children die in hot cars, I normally point out that it's surprisingly easy to forget a child in the back seat, and that this is fortunately a rare occurrence. No, I really do that.

However, in this case they had two counselors and a driver for four adults. I don't know how things are run, but I know that drivers of school buses are required to walk to the back of the bus at the end of their run, every day, to post a sign saying they checked for children. Why? To prevent this sort of thing from happening.

However, let's digress slightly. Way down at the bottom of the comment page there's THIS off-topic comment:

Read more... )
conuly: "I'm not a puzzle, I'm a person" (puzzle)
That's, what, the second time this summer?


Seriously, don't. It's the usual morass of eugenics, hatred, and excuse-making, with the occasional racist remark thrown in for good measure.

Don't read the comments, guys.
conuly: Quote from Heroes by Claire - "Maybe being different isn't the end of the world, it's just who I am" (being different)
So I'm just gonna post them and you'll have to read them. (this last is just so I can stare at the comments. There's two people in them saying the same thing happened to their kid as happened to Alex Barton. What the hell is wrong with education these days???)
conuly: (Default)
Here is a neat summation of the various issues around this, if you haven't thought of this before.

Here's an article on the death. I find it annoying that they describe her, at six, as being unable to care for herself because she had Rett's syndrome. I know what they mean, but meanwhile - she was kindergarten-aged! Barely the age typical children start real school. At that age, you're not supposed to be able to care for yourself, which is why children are expected to have guardians. They might've found a better, less silly way of phrasing it.
conuly: Quote from Heroes by Claire - "Maybe being different isn't the end of the world, it's just who I am" (being different)

Read more... )

And look, there's letters!

I won't quote every letter in its entirety, but let's look at some of them....

Different cancers need to be treated differently, for example, as do different forms of epilepsy. A potential treatment to which severe autism will respond, but to which “pervasive developmental delay” or Asperger’s will not, will never be known if clinical trials do not separate different forms of “autism.”

Really? You had to go there with the cancer analogy? SERIOUSLY? Why is it always cancer? Let's go somewhere different for a change. Maybe ebola. Ebola might be nice. Why does it have to be cancer, every time?

In more than 40 years of practice as a child psychiatrist, I have found it more fair and reasonable to “label” someone as a “quirky kid” who may need some social training skills, rather than offering a medical diagnosis.

At the same time, I am aware that funding is not available for “quirkiness” and that some parents much prefer a diagnosis. But the latter is often because parents then feel less responsible for their child’s difficulties.

You, uh, you get many patients with that attitude of yours? I'm asking cause, you know, I wouldn't pay you. I'm just saying.

Well, that was an amusing (more or less) two minutes. Time to go poke Evangeline and see if she's ready to wake up from her nap, I guess.
conuly: Quote from Heroes by Claire - "Maybe being different isn't the end of the world, it's just who I am" (being different)
According to this, anyway.

Dr. Edwin Cook, an autism researcher with University of Illinois at Chicago, offered a novel theory for why autism is more common among children with older parents: Autism is known to run in families and it may be that adults with mild or undiagnosed autism have children at later ages, Cook said.

Not that novel, it was my very first thought when reading the headline. Admittedly, having it be my very first thought doesn't necessarily mean anything, but it definitely was what I thought.
conuly: Quote from Heroes by Claire - "Maybe being different isn't the end of the world, it's just who I am" (being different)
of ethical and professional guidelines.

To those of us who already know all this, this is old news.

To those of us in deep denial... nothing's gonna convince those folks. As in...

I feel very sorry for this doctor. We are still at stage 1, of 3, of the truth. They are still ridiculing the idea. I have a 16 year old son, he was normal befoe his vaccinations, with in a few months of his injections he changed. He has been diagnosed with Asperger Syndrome.
I believe he his an mmr casualty.
In America, one family has been paid out for mmr damage.

Asperger's syndrome. Huh. 25 years ago, that kid would never have been diagnosed. Asperger's wasn't even in the DSM at that time. It's better this way, I do believe that, but when the next comment by this person runs "And you know, the rate of autism is increasing!!!" remember that it's increasing because kids like his weren't getting diagnosed back in the 80s.
conuly: Quote from Heroes by Claire - "Maybe being different isn't the end of the world, it's just who I am" (being different)

I'm feeling inexplicably exhausted right now, so I'm not going to read it just yet, I'll do that later.
conuly: Quote from Heroes by Claire - "Maybe being different isn't the end of the world, it's just who I am" (being different)
It always craps out in the rain. And this time it was raining AND the ceiling was leaking RIGHT OVER MY BED. (I moved my bed.)

Here's a story about Autism Speaks raising money to help a school that couldn't open because of Katrina. Aww. They finally did something righ- no, no, wait, actually it seems they never gave any of the money they raised to help that school or any other, and who knows where it went.


Well, I'd say "that sucks", but that's pretty much par for the course for these people. I'd like to pretend to be surprised... but I'm not. I mean, how could I be?
conuly: Quote from Heroes by Claire - "Maybe being different isn't the end of the world, it's just who I am" (being different)
Here it is, you can read through it at your leisure. In the comments there, I told Leora I had another thought to get to, and I intend to do just that. But first, I want to add something to that post that came to me at 3 in the morning that I'd left out. (I actually do a lot of my posting in my head at 3 in the morning. I'm eloquent and persuasive when I'm about to fall asleep. When the sun comes up and I eventually wake, the words aren't as clear and I lose something, but I assure you, I'm brilliant when I'm in bed with my eyes closed.)

In addition to the pragmatic reasons for not accepting the arbitrary division of high-and-low-functioning in order to say "Well, most of us aren't like that", which I listed and spelled out for everybody, there's also a clear ethical reason not to do so.

By making that argument that 1. These folks are bad because they say mean things about autistics in order to agitate for more money to spend on a dubious search for a "cure" and 2. They're wrong in their word choices because most autistics (which is where they get their 1 in 166 number from, from the whole spectrum, incidentally, but that's on their consciences, not mine) aren't as they portray, you're tacitly saying 3. IF all or most autistics were really "as bad" as they make out, it would be okay to say these things about them. It would be okay to blame them for breaking up marriages, it would be okay to rationalize their murder, it would be okay to call them soulless or trainwrecks, it would be okay to compare them unfavorably to children with AIDS or cancer, it would be okay to compare autism to child abductions.

But it's not okay! It doesn't matter if we're talking about Einstein or not! It doesn't matter what you think a kid's (there are no autistic grown-ups, and if there are, they're perpetually children, of course) functioning level is, it's not okay to talk like this.

And it's not okay to say it's wrong just because it's inaccurate with respect to whom it's insulting.

It's one thing to not bring up the hate speech at all because you need to open that door first. But to bring it up and then to make an argument that seems to say it would be justified if only people were more careful about defining their terms... you can't do that. It's abhorrent and reprehensible.

If we're going to take a stand against this language, if we're going to take a stand against these attitudes, then we have to take that stand together. You can't go dividing people up, saying "It's okay to say those things about THOSE people, so long as you don't say them about ME". You can't do it.

This is now a post on its own, so I have one more post left to do. I'll get to it in a bit, promise.
conuly: Quote from Heroes by Claire - "Maybe being different isn't the end of the world, it's just who I am" (being different)
Due to transportation difficulties I actually only was there for half an hour or 45 minutes at the end. (They ran out of fliers!) And at the end Ari Ne'eman asked us all to post something about the event, and I spent the past few weeks thinking about what to say. Because you know, I came in at the end and all. Well, I just spent a heck of a lot of time organizing some of the tags over on [community profile] asperger (we'd run out of tags because we were tagging entries by username, so I neatly deleted all those and set up a new system which is alphabetical in nature, but I had to go retag all the previously tagged-by-username entries), and you know, there's a lot of good posts there languishing in obscurity, some of which made me realize I do know exactly what I want to say!

It's not strictly speaking on the protest, which I feel slightly guilty about, but it's inspired by the protest. And anyway, he asked all of us and I kinda mumbled, so that's not binding or anything, is it?

Now, the thing with Autism Speaks, as far as I'm concerned, is that they're evil they use hate speech and think it promotes "awareness" to be extremely offensive (and occasionally deceptive), even concerning their own children. However, some people don't find anything wrong with parents saying in front of their children that they want them dead or... well, anyway, the point is that if you go and tell people Autism Speaks is evil because they're hateful, some people won't listen. (Some people....)

No, what you do, apparently, is tell them that Autism Speaks mismanages its own money and that only a tiny percentage of the funds they take in goes to help actual autistic children and their families. (Meanwhile, they seem to spend quite a bit of money into their own pockets. And, as I found out talking to people then, into donating free tickets to their own benefits, but that might be reasonable, I don't know. Seriously, why do people give them money?)

This is a very good argument because you can't... argue with it. Whatever you feel about cures or autism or killing your kids, you can't argue with the fact that these people waste your money. (Well, not my money, because I'd sooner give all my money to the scientologists than let so much as one copper penny get into their greedy little hands, but you know what I mean. They waste the money of people who don't know better than to give them money to waste, and that's just shameful.)

So, you know, that's the background on Autism Speaks.

Well, for those 45 minutes or so, I spoke to a very few people, and I listened to other people speak as well. (And a very special shout-out goes to those two admitted special-ed teachers who seem to think nobody ever listens to The Poor Parents and that it's reasonable to tell a child you want them dead. I hope your teaching licenses get revoked for the sake of the poor kids in your care. BTW - it's not like Autism Speaks is giving so much of its money to help you and your students either, so yeah.) At one point, a man started giving us his whole life story the little bit he knew about autism. He's got a friend with an adult autistic son who... oh, I forget, who doesn't speak and who needs a lot of help. And the person he was talking to was going "Oh, well, most of us aren't that low-functioning and that's not the norm" and... I knew why I was uncomfortable with this line of argument, but it took a while before I knew how to say it, so I didn't interrupt.

It's very common among some parties to divide autism roughly into high-functioning and low-functioning for matters of convenience. Depending on who's doing it, they might say "Well, high-functioning, they're autistic but they can talk and get jobs and go to school and they're often brilliant, and they make eye contact and never do anything weird to make me uncomfortable!" or they might say "Well, yeah, but what about those low-functioning autistics who can't even communicate or live a normal life, who are randomly violent and sad sad sad all the time and probably retarded and who do weird things with their poop and they rock back and forth and it's weird".

And then, depending on how they divided it up and why, they might go "Well, we can't cure autism because we like those smart people" or "Well, those people who don't want a cure aren't really autistic and I don't like them" or "Well, those people who don't want a cure are only saying that because they like those smart people, and they're not thinking about those poor low-functioning autistics whose parents all secretly want to kill them".

At this point, my thoughts go into several different tangents. Try to keep up, okay?

1. I will grant that there is some logical purpose behind labels such as high or low functioning. However, even if those labels were consistently applied (which they're not), there's just too much variation in people in general. These two views people have miss the whole middle ground of people who need more help in some areas and less in others.

2. You'll also note that the way people in their own minds (as compared to any sort of clinical or official usage... which I also don't think is as consistent as it should be) group people is full of ableist assumptions, like the one that says that "low functioning" people always would want a cure if only they could understand (but can't) and that if anybody is capable of communicating in any way that they don't want a cure they're not "low functioning" even if they fit every other category out there.

It also makes fairly arbitrary assumptions about what is better and what isn't. Speech, for example. Hard as it is to believe, there are people in this world who would rather see their child work hard to speak badly than to see them communicate well in any other fashion, be it sign language, writing, or an assistive device or... anything else. Or, take stimming. Stimming is what autistics are doing when rocking or flapping or pacing. It can be fun, it can be calming, it can alleviate boredom, and it can help people function. By any reasonable measure, stimming that doesn't hurt people should be considered a good thing - it helps people work and learn and get along in a world where things can be frustrating or overstimulating. However, it's not uncommon to hear people complain about it, to talk about how some of us "just don't understand" why it has to be eliminated in their kids. Recently, somebody posted on [community profile] asperger about her experience in working at a school for autistic kids, and the teachers went out of their way to shame kids for stimming because it's "weird". (By the reasoning used above, these kids would be "high functioning", as they talk and all that. However, when push comes to shove their parents would say they're not as compared to "those high-functioning autistics who don't want a cure who aren't really autistic and don't count". More on this in a bit.)

They also make the assumption that without lots and lots of help, these kids will never change or develop on their own. This is probably more complicated than that, although I'm not going to take any stand opposed to actual help.

3. Because I just used the phrase "ableist assumptions" and mentioned a few things which I think are fine about autism, I've put myself in the group of "those horrible people who don't want a cure because they Just Don't Understand!!! Did I mention the poop????? They don't want my kid to ever have any treatment ever!!!!"

It's because of this arbitrary division people set up. By sorting the spectrum into "low-functioning" and "they don't really count", they're able to put every possible aspect of being autistic into the "we have to get rid of it!!!" bin. (And then they wonder, some of them, why their kids are unhappy! More on this in a bit.) Because those of us who "don't really count" say that stimming is okay, or maybe that it's okay to type instead of write if it's easier for you, it's like we said "No, you should absolutely never take any steps towards helping your child communicate in any way whatsoever" or "Yes, I think your kid should keep doing weird things with their poop and never be toilet trained" or "Sure, I think that being so sensitive to tags that you rip off your shirt is JUST PEACHY".

This is nonsense, of course. Nobody endorses the view that autistic kids shouldn't be helped to function as best they can. Nobody thinks that meltdowns are fun (especially not anybody who's ever had one). Everybody in the world thinks that people need to be able to communicate with others. But we can have those self-obvious views without also having the views that everything autistic is automatically bad, or that normal is a better way of being by definition, or that the only cure for the aspects that are problematic is to eliminate autism altogether.

4. Around the same time I went to this protest, I read a few of the comments over in Schuyler's Monster. I stopped at the top, basically, because I was getting upset, but a few people with autistic kids were talking about how "those people who don't count" (Hi!) couldn't possibly understand why a cure is important because, after all, we can't see how unhappy their kids are when they can't "make friends" or when they get "picked on".

(Interlude: That's my childhood in a nutshell. I've told my nieces. You can ask my sister. I was friendless for almost my entire childhood. I think I understand this just fine.)

One shouldn't make assumptions, but that's just what I'm going to do. I'm going to assume that these people have kids who, logically, are "high functioning". Why am I going to assume this? Because I imagine that if I had a school-aged kid who had trouble with toilet training or who couldn't speak or who had frequent inexplicable meltdowns that this would be my concern - not the fact that they didn't have friends. (The later comments may have been different, I don't know.)

So if their kids are probably a lot like I was as a kid, why don't my opinions count? Because it's convenient for them to say I (and anybody else anti-cure) have nothing in common with their children. It's really as simple as that.

Of course, I can offer up some advice as to make their kids happier, but they're unlikely to take it if it conflicts with their view that their kids' problems == autism. For example, I might suggest that most people (gay people, black people, autistic people, and everybody else) are happiest when they're accepted for who they are instead of being asked to hide aspects of their identity. And I might say that the ultimate cure for prejudice as expressed by their kids' peers isn't more prejudice but more learning. And I might even suggest that if their kids were typical and other kids picked on them, their answer wouldn't be "be more like them!" but "those kids aren't worth your time".

Or I might not waste my breath.

5. So this all brings me back to why those comments irritated me. WHEN you make a big deal about how "I'm not like THOSE people, most of us aren't like THOSE people", you're justifying the sort of division in people's thoughts that allows them to say that YOU don't count - after all, if you're not like THOSE people, and THOSE people are really autistic, where does that leave you? (And if some of THOSE people are also anti-cure, does that mean they're bumped into being NOT those people? What does that do when they need services?)

Furthermore, you undermine your own efforts to get accommodations. If you're not like THOSE people who rock in a corner all day, surely your boss is justified in actions taken if he's uncomfortable seeing you occasionally flapping your hands or spinning in your chair? (And if it's okay for YOU to stop stimming because you're not like THOSE people, then surely it's okay to make THEM stop stimming so they can be more normal - like you! - right? Nobody is helped by this!) If you're not like THOSE people who can't even communicate, how can you be justified in asking to email instead of using the phone? Can't you even talk? If you're not like THOSE people, why aren't you looking me in the eye?

(I agree that this is all very illogical, but nothing about this makes much sense except the simple fact that we need to not make arbitrary distinctions where they don't benefit any of us.)


conuly: (Default)

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