On Easter Seals

Trigger Warnings: Ableism, anti-vax, silencing of autistic people using functioning levels and discussions of such.


Easter Seals:
I heard that you sent an apology and chose not to call autism an epidemic anymore. I'm glad you did it. It was a big step in the right direction. Huge, really. You moved from "It's an epidemic!" to "People are finding out, and we're going to help them get the services they need." One of these is scary. The other is honest. Yes, it can be hard, but help is there, and that's the big thing. (No, I don't like the way services look. But you're not the service provider or really the policy maker, so you're not the one who needs to hear about those issues. It'd be nice, since groups that are getting money have power, but that's not what this response is about.) And you know what? Employment training for adults is one of your things too! So that's another thing that's good. You're putting the focus where it belongs, on actually doing the things rather than saying scary things that increase stigma.
And yes, you're taking a lot of flack for it. It looks to me like a lot of it is from people who think vaccines and autism are related. Going to put it out there that I am fourth generation autistic, at least, direct line of descent. Yes, I'm fully vaccinated and autistic, but genetics. Genetics is a thing, autism runs in families, the big study everyone likes to point to blaming vaccines was found a fraud.
But you know what? That's besides the point too. The point is that autistic people are here, right now, and that referring to autism as an epidemic and a public health crisis does increase stigma. That means that for people who want their autistic children/children with autism to have a better life, calling it those things would be counterproductive even if it were true. (It's not. I really, really wish I hadn't lost the link to the study that found an autism spectrum rate right around 1% in British adults. Not "people living in institutions." General population, adults, 1%, right around where the kids are, no epidemic.)
They're also saying that you "sold out to high functioning adults." No. You listened to autistic people. The people who have the closest relationship to autism there can be for anyone. And it's not as if the people who were asking for the change and thanking you for it are all given the "high functioning" label. (No one ever gave me any functioning label, FYI. High is probably the one I'd get, but there is that whole self-inflicted scars thing, and the can't drive thing, and the can't actually do most activities of daily living thing... they seem to care more about verbal ability, though, and I usually speak well?) Anyways, functioning labels aren't as great as they seem because there are too many variables on what kinds of support needs people have, and some of the people asking for and thanking for the change wouldn't get the "high functioning" label by the standards of anyone who uses them. The idea that only someone considered to be "high functioning" could care about language is a fallacy, and one that comes from the old idea that autistic people wouldn't have thoughts or opinions. We do. Saying otherwise is just another way of denying the right of autistic people to speak about autism, claiming that anyone autistic enough to matter is too autistic to speak- that way, only parents matter. Which is, of course, wrong.
So thank you. Thank you for choosing language that doesn't add to the stigma and focusing on actually giving help. Fear tactics tend to work short term but cost a lot long term, and the cost of epidemic language is one the children will pay and that autistic adults are paying. Thank you for deciding not to add further to that debt.



This is the text of the apology they sent, just for reference:

Dear [recipient]

On Tuesday, we sent you an email about autism and we owe you an apology. We called autism an epidemic and some of you called us out on our language. You're right.

Autism is not an epidemic. Autism is not a public health crisis. Simply put, more people today are living with a diagnosis of autism, in large part because our diagnostic tools are better and more available.

In fact, in the next 20 minutes, a family will be told their child has autism. They'll have questions. They may worry about the future. They may feel lost and alone, unsure where to turn for help. This is where Easter Seals comes in.

Every 20 minutes, a child is diagnosed with autism. To help a family living with autism or other disability, make your gift to our Urgent Fund Drive.

Early diagnosis for young children. Behavioral therapy for school-aged children. Employment training for adults. These are just a few of the programs Easter Seals provides that help people with autism learn, grow and live their lives to the fullest. With your generosity, we can be on the front lines, helping as many people as possible get the support they need to achieve their dreams.

Across the country, all of us are doing more with less.

Not every child with autism receives appropriate services, not every adult can find residential and employment services, and many older adults still need assistance to live in their own homes.

With your financial support, we are able to provide essential services to children and adults living with autism so they can live the lives they choose. But there's so much more we could do.

Thank you for your support and I hope you accept our apology.

Sincerely,

Easter Seals

Think Fear. We Do.

Trigger Warning: Passing mentions of anti-vax, Boston Marathon bombing, 9/11

Yes, that's a spoof of the URI "Think Big. We Do." Because fear is more accurate, apparently.
Back in April, we had a lockdown because someone suspected an active shooter on campus (there wasn't one.) And we're a state away from Boston, so we did hear a decent bit about the whole marathon thing. (Frankly, the way that they actually shut down the whole city scares me a lot more than the bombing did, because I'm thinking about what this could serve as a prerequisite for.)
And then, with a little more than a week left, URI announces that it is moving the graduation inside, for sure. For "safety."
Um, no.
There are two main arguments I've got here.
1) We shouldn't be letting fear rule us.
2) It's not actually safer.
So, here's the first: We shouldn't be letting fear rule us.
Bad things happen when we let fear rule. The much-hated Patriot Act? A result of the fear following 9/11. War in Iraq? Result of fear, again. Fear largely coming from lies, by the way. The current measles epidemic (Europe, specifically the UK if I recall)? Yes, fear. That fear came from study fraud about a vaccine and from fear of autism, specifically. Whooping cough running around? Fear again, vaccines again. The entirety of 1984? Fear, fear, and fear, mixed with a healthy dose of hate. Because we hate what we fear. Basically every quack cure for autism ever? Sold on fear of disability, discrimination, abuse that parents think they can save their child from if only they didn't have autism, plus a healthy dose of fear about what autism means for the family. I could go on. Or I could remind everyone about how those who give up liberty for security don't tend to get either.
Which brings me to my second issue.
The Ryan Center, where indoor graduation is? NOT SAFER. Here's some reasons why:

• It was already the rain location. That means that if someone was planning to do anything to graduation, they already had a plan for "What if graduation is in the Ryan Center?"
• In the event of an emergency, being able to enter and exit quickly is important. It's not something you can do at the Ryan Center. It's pretty easy on the Quad.
• The "security" measures they are taking are pretty easy to beat. Like, I know several ways to get things through, even assuming that any bags really are searched. (Seriously, bags "may be subject to search, as needed." Realistically, that means that a white man is highly unlikely to be searched, even though they are statistically speaking the ones most likely to do that kind of thing. Oh, and the Boston guys? I haven't kept enough track to know much, but their photos were definitely of white-passing men, at the least.)
• No, really. The security measures are a joke. Go read about security theater. That's what this is, all the way. 

I'm not really expecting that anything will change their minds, but there is a petition. And if people felt like signing it, that would be cool, even if just so that URI has evidence of how unpopular this thing is and hopefully don't try this ever again. 

Why I'm Here

Trigger Warning: Basically every kind of ableism you can think of, eugenics, murder, abuse, silencing.

I do a lot of writing, and I do a lot of explaining, and I do a lot of teaching. You might wonder how I find something to write about every day, even with the times that I give you something like fanfiction or essays I wrote for class. Here's the thing: There are more things that need writing about than I can find the time or energy to write about. If I had the time and the energy to do the writing, I could probably come up with five or six things that need addressing in the world of autism each day and write about them all. That's a conservative estimate. There's more, I'm sure. Politics of parent-run groups could use updating with some new things, though it might be enough new stuff to justify a new post. I'm not completely sure. Don't believe that there is more to talk about than I can cover? Here's a small sampling of things I see and hear:

"If you go looking for ableism, you'll find it."
"There's no such thing as autism- I would know, I meet the criteria for it."
"You're not like my child!"
"I don't see you as being autistic. I see you as having autism."
"But vaccines!"
"People with autism lack empathy. I know because they fail this empathy test, and I know it's an empathy test because people with autism fail it."
"Can't you act normal?"
"Quiet hands!"
"It's so inspiring that you've overcome your autism to be able to write like this."
"My brother with autism is perfect and I love him. Help me walk for a cure!"
"Don't you mean you're a person with autism?"
"You're so broken you don't even know you're broken."
"Of course you don't understand, you have autism."
"People with autism are perfect angels who would never hurt anyone on purpose."
"He has the mental capacity of an infant."
"Do YOU have a child with autism?"
"You're trying to keep low functioning people from being cured."
"If I knew my child were going to be like you, I'd get an abortion."
"What do you mean, it's not a compliment to say that you don't seem autistic?"
"Did you hear about that study that says some people with autism can recover?"
"But vaccines!"
"Look at coal!"
"If my child could write like you, I'd consider him cured."
"I can't be ableist because I'm autistic too!"
"I can't wait until DSM 5 comes out. Then you'll have to admit you're just a jerk."
"It's more common than pediatric AIDS, cancer, muscular dystrophy and diabetes combined."
"What do you mean, 1% of adults are autistic too?"
"You're so tragic."
"Everybody panic! AUTISM!"
"My child won't look me in the eye."
"Applied Behavioral Analysis is going to recover my child from autism."
"Autism stole my child."
"If you want us to include you when we talk about autism, you have to stop acting so autistic."
"Isn't Autistic culture an oxymoron?"
"People with autism don't know they have autism, so if you think you're autistic, you aren't."
"You can't call yourself Autistic, it's offensive [to people with autism.]"
"What do you mean, a person who can pass is going to have very different experiences from someone who can't?"
"My child will never..."
"Your autism doesn't define you."
"VACCINES!"

Yes, people find new and different ways to combine these, sometimes, but usually? Usually it's stuff I've seen before in combinations I've seen before, or in combinations that I've been warned about. (Don't say these things. You'll be wrong, and I reserve the right to answer you with a link to the reason you're wrong and then laugh at you.) Remember, not a note of this is new. We've danced this dance before, and I'm sure we will keep dancing it for some time yet.

P.S. Go watch this. 

Flu Vaccine

Trigger Warning: Needles/blood tests in the three paragraphs following the bolded line.
The rest should be OK.
Sarcasm alert on basically the whole post.

I got two vaccines today- the flu and something else. I don't actually remember what the other one was, but it's one of those ten-ish year ones. It hurts, too. Ah well, vaccination is useful. I quite like this "not getting the flu or pneumonia" thing, really.
And goodness, will I be pissed if I wake up neurotypical tomorrow.
My thing with vaccinations, or really anything involving a needle, is that I can't watch the actual injection. Once it's in, I can look and it's fine, but I can't watch them put it in. I know, it's kind of weird. I really only know about the ability to look after because of blood draws for labs.
Yes, this is apparently TMI about Alyssa's doctors visit fears and oddnesses day, except for the first bit. Sorry, everyone.
The main point of this post was the joke about my being pissed if I wake up neurotypical tomorrow, so don't worry if you don't want to keep reading past that.
I guess it leads into a vaccines don't cause autism thing, but it's 11:30pm, and I'm tired. I had a thing queued that I could have used, but I wanted to make that joke. Today is not a quality day.
So.
Vaccines didn't make me Autistic. Genetics did. Like, a huge portion of my mother's side of the family, right up through a great-grandmother and her sister were/are autistic. If that's not genetics, what is?
But people seem to think that genetically neurotypical people somehow get turned autistic by vaccines.
If vaccines can re-wire brains, I guess it could rewire someone who is genetically autistic to be neurotypical instead.
And if it did that, I would be pissed.
Thankfully, vaccines don't actually rewire brains in either direction.
...
Or do they?
I'll let you know if my sensory processing problems suddenly vanish and I suddenly stop caring about any of my Autistic obsessions and don't get new ones and I don't mind eye contact instead of just being able to fake it well enough no one else can tell and I stop stimming. Yeah, not happening, and I'd be pissed if it did. Unless they could get rid of just the sensory processing issues and leave everything that's because autism. I'm not convinced that it's possible, but it can't make much less sense than a vaccine re-wiring my brain, right?
Of course not.
Not much makes less sense than a vaccine giving me autism.

Cancelled Event Doesn't Stay Cancelled.

Trigger warnings: ableism at the links, mentions of dangerous autism treatments/abuse/murder in article and at links.
So, remember Orycon and their autism panel, which surprised me, and the way they handled it, which disappointed me but wasn't exactly surprising? Well, they said they would cancel the autism panel that had no autistic people on it (a reasonable move- not as good as just getting an autistic person who knows about the issues they want to talk about, but reasonable) after offering up the son of one of the panelists as a token autistic (he's not an activist or an expert in the things they wanted to talk about.) The panel was originally planned to be about the diagnostics of autism (why are the rates going up, so far as I can understand.) It's easy to find an autistic who has an opinion on that. It's even fairly easy to find multiple autistics with differing opinions on it. You've got "they're just better at catching it" and "it's harder to be a hermit so you actually see us now" and "it's gotten more disabling because you lot suck at handling sensory issues, which means we're more obvious" and people who think it's various combinations of that and probably people who think it's related to higher reproductive success for people with the "broad autism phenotype" in the modern world than previously. There are a TON of theories. I think it's one of the "we've always been here and something changed so that now you're noticing" ones. It's really not hard to find an autistic with an opinion on that.
And... the event didn't stay properly cancelled. Two parents and the token son did show up in the room, which still referenced autism, and they had an "informal discussion of disability." Given that they were talking about MMR in other conversations, I'm betting they brought it up there, which means that is now blood on their hands. Future deaths of vaccine preventable diseases caused by not vaccinating and future abuse and fatalities caused by autism "treatments" based on the idea that the thimoserol in vaccines causes autism are now partially their responsibility too. Panels like this and the treatments that people who believe them are part of the reason so many of us are scared of parents, one of the things that this letter to Orycon about the incident noted. In fact, that letter includes links to some of the treatments used for autism, some of which even use the mercury argument, meaning that some of those treatments are among the ones Joyce Ward-Reynolds and G David Nordley are now partially responsible. If they want to clear themselves of that before they get more blood on their hands (it's been a few days, I assume someone's gotten one of the treatments or died of a vaccine-preventable disease by now, sadly) they need to state on a significantly larger scale than their informal panel that a link between autism and vaccines hasn't been found, even at the level of correlation, that these treatments are abusive and won't actually fix the problem, that they understand why making that kind of statement is dangerous. Otherwise, they might not reach everyone who was reached by the people they spoke to, and once parents are convinced of something, it's very hard to unconvince them. They also need to apologize for having the panel anyways if they want the "decent human beings" award, but that is secondary to "blood on their hands." This isn't OK, Orycon. This isn't OK by any stretch.

Anti-vaccination groups are seriously scaring me right now

Trigger Warning: Chelation for things other than heavy metal poisoning, especially for autism.

So, we all know how vaccines don't cause autism and are actually safe, right? I hope so. That's kind of an important thing. See, there are some vaccines that might not be actually needed for keeping your kid healthy overall, like the chicken pox one. I get that. In fact, people used to have chicken pox parties to make sure their kids all got chicken pox young, since it's milder when you're a kid and it's better to just get it over with. And yes, there are very rare vaccine injuries. (Well, not quite as rare with some versions of the rabies vaccine. But you only get the rabies vaccine after you've been bitten by something rabid, which is otherwise a death sentence, so you kind of have bigger fish to fry than the vaccine not getting along with you well.) Point is, we have vaccines because they are less likely to kill you or cause permanent damage to you than the disease they are meant to prevent. Simple as that. And the science backs up the fact that vaccines do, in fact, prevent more harm than they cause.
That does not mean that people, especially the people who are not afraid of all chemicals because chemicals, don't freak out about the trace chemicals in vaccines. Guess what? I've seen scarier statistics in parody pages about the dangers of WATER. It's the dose that makes the poison, guys, and calling the mercury compound that used to be in vaccines mercury makes about as much sense as calling water hydrogen. Which some town apparently did once... but the point is, it doesn't make sense.
That said, over on the facebook page "The Truth About Vaccines," someone asked about detox for after vaccinations. And in the comments about this question, someone suggested chelation as a routine way to detox a child from vaccines. Chelation might sound familiar to some of you. It's been used in attempts to cure autism by people who think autism is mercury poisoning or other heavy metal poisoning, since removing heavy metals is what it does. Just like it's a bad idea to chelate an autistic person unless they ALSO have heavy metals in concentrations significantly higher than is healthy, it is a bad idea to chelate an NT unless they actually have heavy metals in that kind of concentration. Here's why:
One: Most of the things they're talking about as the toxins in vaccines aren't heavy metals. Chelation won't touch them anyways.
Two: Chelation WILL drain calcium. You kind of need calcium.
Three: The heavy metals that are in vaccines are not there in amounts that will be toxic. That means they are not there in amounts that require chelation.
Four: Chelation is DANGEROUS. People have died from it.
The idea that chelation has been seriously suggested for anyone who has been vaccinated as a way to detox seriously scares me. A lot.