Note For Anyone Writing About Me

Guide to Writing About Me

I am an Autistic person,not a person with autism. I am also not Aspergers. The diagnosis isn't even in the DSM anymore, and yes, I agree with the consolidation of all autistic spectrum stuff under one umbrella. I have other issues with the DSM.

I don't like Autism Speaks. I'm Disabled, not differently abled, and I am an Autistic activist. Self-advocate is true, but incomplete.

Citing My Posts

MLA: Zisk, Alyssa Hillary. "Post Title." Yes, That Too. Day Month Year of post. Web. Day Month Year of retrieval.

APA: Zisk, A. H. (Year Month Day of post.) Post Title. [Web log post]. Retrieved from http://yesthattoo.blogspot.com/post-specific-URL.

Showing posts with label Eugenics. Show all posts
Showing posts with label Eugenics. Show all posts

Sunday, October 6, 2013

Explaining in ENGLISH

Ok, so I've been in Tianjin for about a month now. Just over a month, actually. A lot of cool stuff has happened. Including...well, I said in My Problem With Homework that I'd never managed to explain my problem so a teacher understood? No longer true. I've still yet to manage it in English, but I've now done it.
And now I've translated my side of the conversation, edited a bit to make sure there is enough context for people to understand what I'm talking about, if not always why. Original Chinese here.

Trigger Warning: Reference to euthanization, Description of ableism (by teachers.)

You know how when I'm having a problem sometimes I can't talk? Now I know that if the problem happens when I'm using Chinese, I have the not able to talk thing in Chinese too.

Euthanization is the reason for this time that I can't talk.
During class, the teacher showed us a picture.
If you had something a lot of people thought was a good reason for euthanization, you'd probably be uncomfortable too.
I know the teacher doesn't agree with it. The picture is still scary and makes me uncomfortable.

It's really hard for me to start anything on my own. (Eating three meals a day and showering daily can also be a problem.) Ever heard of executive dysfunction? I still don't have a good method. If I find one (or you help me find one) then I should be fine.
This weekend I tried not doing my math stuff until I finished studying for Chinese. That failed: the result was that neither Chinese nor math was done. I'd thought that if I couldn't do the homework I wanted to do until I finished the Chinese that might help. (I'm interested in Chinese, but more interested in math.)
Starting stuff is the problem. (For example, it can take me 2 or 3 tries boiling water before I manage to add the hot water to the ramen.)
I can forget I have stuff I need to do, or I can know I need to do it and have trouble starting. Switching activities is also hard.
[The teacher asks me what I did before to get my homework done.]
That's the problem! In the USA, I'd choose classes where if I payed attention in class, I could pass the tests. I had problems in the classes where there was daily homework/previewing. I had the same problem in the USA, I was just able to choose different classes.
I know I need to do it. That's not the problem. In middle school, I mostly did my homework during other classes. One day, I got seven classes homework assignments done during class. This is bad. I know it's bad, but it was better than not getting the homework done.
My older methods:
1) Choose a different class (no good)
2) Do homework in class (no good.)
I need a third method. I need help.
Before, teachers always said because I was smart, I should be able to find a method. No one taught me to do it. Teaching me could help.

Saturday, October 5, 2013

Wow. So this happened.

Ok, so I've been in Tianjin for about a month now. Just over a month, actually. A lot of cool stuff has happened. Including...well, I said in My Problem With Homework that I'd never managed to explain my problem so a teacher understood? No longer true. I've still yet to manage it in English, but I've now done it. 
I translated this into English- it's my side of the conversation, edited a bit to make sure there is enough context for people to understand what I'm talking about, if not always why.

Trigger Warning: Reference to euthanization, Description of ableism (by teachers.)
内容包括:安乐死,残疾歧视


你知道我有问题的时候可能说不出来?我现在知道,如果问题是用中文的时候发生,中文也有说不出来的问题。

安乐死是这一次说不出来的原因。
上课的时候,老师给我们看一张图片。
如果很多人认为你有的一个问题是安乐死的好原因,你也会紧张!
知道老师不同意,而看那张图片还令我紧张,可怕。

我很难自己来开始做什么事情。(在每天持三顿饭,每天洗澡也有问题)。执行功能问题听说过吗?我还没有找到好的办法。如果我找好办法(或者你会帮我找好办法)应该没问题。
这个周末我试一试做好了中文以前不开始数学的。失败了:结果是中文,数学都没有做好。我以为如果我决定做好了中文后才可以做我感兴趣的课会有帮助。(对中文也感兴趣,而对数学更感兴趣。)
开始做什么事情是我的问题。(例如说,我做方便面的时候,23次开水才记住把热水放在碗。)
我会忘记我自己要作什么或者我知道要做什么,而很难开始。从一个活动换到另外一个活动也很难。
[老师问我以前做好作业的方法是什么。]
这是我的问题!在美国,我选的课都是上课的时候注意听就会记住,考过。我在每天要预习这样的课从来都有问题。在美国也是这样,而在美国我会选别的课。
我知道我要做。那不是我的问题。在初中,我大多是上另外一门课的时候做作业。有一天,上课的时候做好了七门课的作业。这样做也不行!我知道这样做也不行,而那时候比不做作业好一点。
我以前的做法:
1)选另外一门课(不行)
2)上课的时候做作业(不行)
我要找第三个做法。我需要帮助。

以前,老师只说因为我聪明应该会自己想到怎么做。没有人教我怎么自学。教我怎么做会有帮助。

Tuesday, July 30, 2013

On "Treatments" and "Cures."

Trigger Warning: References to eugenics, ABA, quack treatments

So I got interviewed for a thing, and it's a bit on the down low for now, so that's all I'm going to say about it. But one of the questions was what I thought about people who want to treat or cure autism. Well, it really was if I'm offended by the movement to treat or cure autism. I'm more scared of the damage it does with ableism than offended by it. 

There's a lot of things that go under those two banners. Some I think are fine, even helpful and needed- helping us learn skills that we're capable of learning, helping us figure out how to work with the abilities we have, helping us find ways to communicate that work for us. Of course, that communication one tends to go under the banner of "therapy" more than of "treatment," but if Paul Offit felt the need to write about facilitated communication not curing autism (he does that in Autism's False Prophets, where he unfortunately also seems to think it's a hack,) someone probably thought it did. Which, um, what? Even good things, when under the banner of "treatment" or "cure," tend to come with a lot of bad ideas wrapped up in them, bad goals that they think the good things will help make happen.
Some treatments I think are harmful- most ABA goes there, since the goal is usually to make us act less autistic thanks to conflations of less autistic with happier and more able to do things. Anything that conflates those two things is a problem. The fact that it's compliance-based also scares me. Really the only ABA that doesn't scare me is the stuff that people call ABA to get insurance coverage but where if you look at what they're doing and what ABA actually is, you can tell it's nothing of the sort. (Not all the things in ABA are ABA themself. Collecting data, for example? That's part of scientific method, which is a cool thing.)
Conflations worry me me, like when people conflate various medical issues that some autistic people have with autism and then think they're treating autism by treating those medical issues. Like everyone else, autistic people are happier and more functional when we don't have various medical issues bothering us, but that's different from being less autistic. I think this also relates to the conflation of happier/more functional with less autistic.
Some treatment terrifies me. Chelation, MMS, and the like go here. If the thing is dangerous, medically warranted under a very few circumstances that aren't actually autism, or is based on bad science (often all of these at once,) it's safe to say that it goes here. So do people who think that giving anyone a "cure" for autism without their express consent would be acceptable under any circumstances. 
I also tend to be scared of people who think it's possible to “cure” autism, since it's not really a statement that makes sense... we're talking about the entire way a person's brain is wired here. Curing the random other medical issues a lot of us have? Yeah, that makes sense. Autism itself, not so much. (Conflating those two things? Go back two paragraphs, conflations are scary.) Preventing autism usually just means prenatal testing and selective abortion, which also terrifies me. It smells of eugenics, especially since forced sterilizations of disabled people, court-ordered abortions for disabled people, insistence that disabled people can't consent, disabled people having court orders that say they can't have sex (because they can't consent)? Those are all things that happen, and those all look like eugenics too. There's a lot of stuff like that, and a lot of it goes under "cure," "prevent," or "treat." 

Tuesday, April 9, 2013

Three Poems

I've been writing for NaPoWriMo, but I haven't managed to put them up here.
So here they are:

Today, April 8, 2013, Yom Hashoah: Trigger Warning: The Holocaust

Remembering

I remember you.
Some I am related to by blood.
Some I am related to by religion, even if I am not religious.
Some I am related to by neurology, by disability.
Some I am related to in other ways, ways that were not what cost them their lives.
Some I have little in common with.
I remember them too.
I remember the Jews, with my relatives among them.
I remember the gay men made to serve out their sentence.
I remember the dissidents who dared to speak up.
I remember the Romani.
I remember the disabled, whose murders became mercy.
I remember the priests, I remember the Witnesses.
I remember the nameless, the forgotten, the lost.

Yesterday, April 7, 2013:

Finding Words

I hear, I know, I speak.
In the silence, I watch.
Quietly at times, louder at need.
Speaking when I can,
Sharing when I can't.
Writing because I must.

Sitting, typing, I find my words.
Words I did not know I had
Until I sat to write.
Words I had somewhere, but could not reach.
Now I can, now I write, now I am heard.

Saturday, April 6, 2013

The Day

A sign.
It says "Autism Doesn't Speak Unless Autistic People Are Speaking."
Another sign.
It says "Autistic and Proud."
A third.
It tells of the blood on their hands.
Three Autistics, one to a sign.
Sitting, waiting.
Spotting one who moves like us.
Watching.

A used book store.
A bin of free books, to look at, to bring home.
Shelves, shelves, books upon books.
One purchased, if only so that others do not read it.
Perhaps to be used in debunking.
Perhaps just to keep away from the innocents who don't know better.
Worth it.

A barbecue.
Meats, vegetables, sauces.
Udon noodles.
Three Autistics and a parent,
Eating together, happily.
A gong.
Loud, painful.
Overloaded.

The day ends.
Had ups, had downs, was good.

Thursday, February 21, 2013

Autism in the Blood? Autism Parenting


Trigger Warning: Early Intervention, Possibilities of Eugenics
Leslie, the same person who wrote "How did I know my daughter was autistic?" and possibly "Wholeness and Completion" (unsure, but the daughter's name is the same and the writing has the same extra commas,) also wrote the final article of the December issue, "Autism in the blood?," discussing blood/genetic testing for autism.
For a blood test, the reasoning seems straightforward enough. If we can diagnose earlier, interventions start earlier. Considering what the current interventions tend to look like, that worries me. If the ways that we changed our educational methods for autistic children were ways that worked better for them, instead of making them more convenient for the teachers, parents, and caretakers, being aware that the kid is autistic sooner would be awesome. So this is a mixed bag for me. In an ideal world, this would be really cool. Just as a matter of curiosity, I'd love to know which blood tests currently can and can't tell that I'm autistic. But with the ways that autism is currently handled, I am not comfortable with giving them any information on my genetics that could help them figure this out. Get me a world where knowing you're autistic ASAP is definitively better, not for "acting normal" as most therapies prize, but for navigating a world not designed for you, and we'll talk. In a world where one of the things I am most grateful for is how long it took people to realize that I'm autistic? Not so much.
I still think that the "oh hey, more genes associated with autism means more evidence that autism is genetic" thing is cool, though. The more evidence we have behind genetics for how autism comes about, the better I can smash people who try to tell me that I'm vaccine-injured or something.
The other big worry I have, which wasn't addressed at all despite the fact that the study about it was mentioned, was the issue with prenatally predicting autism. Australian scientists really did develop a genetic autism test using 237 genetic markers that is 70% accurate for, well, white people. (Bayesian inference and an assumed 1% autism prevalence rate gives an actual 2.5% chance that a fetus that tests positive will be autistic. It takes 99% accuracy to make it a 50-50% chance that the kid who tests positive will actually be autistic given a 1% prevalence rate, for reference.) Since the Australian one was designed as a prenatal test, my worry, of course, is selective abortion. The idea of people aborting because the fetus is likely to have a brain wired like mine is terrifying, and it's not something the author is talking about. I envy her innocence, I think.
She's talking about tests and hoping to diagnose toddlers and getting them "closer in relation to their peers by the time they enter school." I'm reading that and wondering: "closer how?" If we're talking about getting whatever forms of communication we can up so that they have similar overall communication abilities (AAC is success here) then I am all in favor. If we're talking about looking normal, I am decidedly not in favor. I don't think we need to abandon all teaching for autistic kids, but I do think we need to be taking a look at what therapies we're using as a higher priority than getting potentially harmful ones to everyone. Take a look at the correlations between ABA and PTSD before we keep calling it the gold standard and getting everyone to cover it?
Increasing social and language skills is great. Make sure you know the cost of the teaching methods, and make sure it's social skills the way they are actually done, not compliance or the way you wish social skills worked. Compliance opens people up for a lifetime of abuse, the way you wish social skills worked isn't going to make them any more friends than the way they think it should work, maybe fewer. Their natural ones will at least work with other autistic people.

Tuesday, February 5, 2013

Autistic and Pregnant

Trigger Warning: Ableism, talk of forced abortions and loss of autonomy

I saw this: 
I’ve never seen a shirt saying Autistic & Pregnant or something along those lines.  Probably because it wouldn’t be safe to wear.
(Source)

It hurts. It hurts that it's not safe to wear a shirt like that. It hurts remembering the signs at pro-choice rallies, saying that "an autistic woman shouldn't be forced to give birth" as if autism has anything to do with the fact that no one should be forced to be pregnant and ignoring the fact that an autistic woman shouldn't be forced to abort, either. 
It hurts to know that people legitimately think that Autistic people either can't or shouldn't have kids. Can't would be the assumption that Autistic people wouldn't be able to have a relationship or have sex or get pregnant, which isn't how it works. We can. We do. Why do you think we still exist? People like us can grow up and have kids. It's not just Broad Autism Phenotypers who have Autistic kids. It's Autistic adults who have Autistic kids too. 
The idea that disabled people can and do have kids, some of whom will also be disabled and some of whom will not is one that people have a lot of trouble with, but it's a fact of life. I want kids. Not now, I'm still in school, but I do want them. And I want to live in a world where I'm not at risk of having my kids taken away from me because I think that the cost of compliance-based therapy and treatment is too high, because I think that there is a huge difference between eliminating autistic behaviors and supporting an Autistic person, because I think that Autistic people are people who have our own wants and needs and goals and can make our own decisions about what is and is not in our best interests. I want to live in a world where a shirt saying Autistic & Pregnant would be safe to wear, where no one would attempt to force an abortion on anyone wearing it, where no one would think the "risk" of the child being Autistic too scary to accept, where being Autistic & Pregnant & Totally Cool With This is acceptable.
That's where I want to be, and that's the world I am trying to work towards. Maybe I'll make the shirt myself when the time comes. 

Sunday, December 2, 2012

Not Safe

Trigger Warning: Discussion of abuse, murder of autistic people FOR being autistic

It's not safe. That's what we all have to remember.
Our lives really might be on the line. That's what we all have to remember.
It means that "Don't listen to them" isn't really an option. When something comes up that includes more stereotype of who we are, when we are called burdens and tragedies and epidemics again, even when something that a casual observer might think is small, it can't be ignored.
You can tell us not to listen if you want, but this is what response you'll get:
"When the law is written to make murdering us for being autistic a hate crime, only then will not listening be an option. Until then, every word or turn of phrase designed to poison minds against us must be answered."- Dean McIntosh
I don't even trust that, though it is a necessary condition. Discriminating against Autistic people for healthcare is illegal, and it happens. Discriminating against Autistic people in the workforce is illegal, and it happens too. I need it written that murdering us for being Autistic is a hate crime, I need it written that abusing us for being Autistic is a hate crime (if it would be abuse to do it to a non-disabled person for the same offense, it is abuse to do it to an Autistic person as therapy.) And I need it to be prosecuted as a hate crime, every time. All too often, even things that legally are hate crimes aren't handled as such because no one cares about the group it was a hate crime against, and seeing that happen while our murder is legally classified as a hate crime is nowhere near sufficient. Hate crimes against us need to be treated as such, and now many are not even recognized as crimes.
There is a list of corpses. Our corpses, of those of us who were murdered by our caregivers, and it's not even complete. It' a partial list of what got reported, and people keep trying to frame them as mercy killings. That's what telling people our quality of life is reduced by being Autistic does. (well, by having autism in their words, since the people who think this want to believe our autism somehow separate from ourselves, which just isn't so. You want to separate someone from their brain? I've gone through several traits of mine I thought had nothing to do with my being Autistic... let's just say I was wrong and they do.) That's what calling us vaccine injured does. That's what calling us a disaster, a crisis, an epidemic, a tsunami does. In the end, it's what the awareness you are probably proud of does- conventional awareness kills. (Awareness a la Autism Speaks is a good example of this.)
With lives on the line and the legitimate fear that ours could be next, from a caretaker or from a healthcare system that thinks saving us is somehow harmful or from simply being allowed to starve while awaiting services, "don't listen to them" isn't a legitimate option. It's the option of covering our ears and closing our eyes and pretending not to notice as Rome burns down around our ears.

Friday, November 30, 2012

I am

Trigger Warning: Eugenics (mostly veiled-ish)

I am a burden.
I am a "situation."
I am a public health crisis, an epidemic, a tragedy.
I am a tsunami.

I am, I am, I am.
I cost and they pay and we need to know why.
Look at coal! It's vaccines! Pollution! Old fathers!
Cold mothers! Fevers and flu (in mom)!
Genes! Lots of genes!

But why does why help?
What does it do?
Why doesn't say what I need.
Why doesn't say who I am.
Why doesn't say how to help.
Why doesn't say good or bad or neutral.
Why, why, why doesn't do much.

Unless the aim is for me not to exist?
Am I just too broken to understand?
Too broken to realize that the best thing for me is nonexistence?
Too unaware to realize I should never have been?
Too selfish to accept that my kind's nonexistence is the goal?

No.
I am none of those things.
I am no burden.
I am no "situation."
I am no public health crisis, no epidemic, no tragedy.
I am no tsunami.

I am a person.
My brain is different.
My nervous system is different.
The way I see the world is different.
Different, even disabled, but not broken.
Never broken.

I am no mistake.
I am no new difference.
I do not come from coal.
I do not come from vaccines.
No conspiracy made me- I was always here.
It's just that you can see me now.
I'll not retreat to the shadows again.
This time, this time you will listen.
This time I will be heard.
I am here.

Saturday, September 22, 2012

Just Imagine for a Moment

Trigger Warning: If it's related to oppression/dehumanization/abuse/murder of autistic people, it's probably in there.

Imagine that you knew beyond all shadow of a doubt that most people would abort rather than have a child like you, even many who think abortion is wrong.
Imagine that you knew that no one really saw you as fully human.
Imagine that you knew people like you were being tortured in an attempt to make them act less like you.
Imagine that you knew most people like you would be abused by people the world considers saints.
Imagine that you knew these "saints" would get away with it because simply dealing with you gave them the title.
Imagine that you knew your parents would, perhaps did, put you through risky and baseless treatments in an attempt to make you less like you.
Imagine that you knew that if your parents killed you, this would be seen as something that happened to them, that they would get the sympathy, that you would be erased from the story of your own murder.
Imagine that you knew the people who joked you had no soul weren't really joking.
Imagine that you knew people considered you incapable of emotion.
Imagine that you knew people dedicated their lives to making sure no one like you ever existed again.
Imagine that you knew people thought that you either stole their child from them or are what remains after their child was stolen.
Imagine that you knew people believed you couldn't understand what was said in front of you.
Imagine that you knew everyone like you was seen as inherently broken, inherently tragic.
Imagine that you knew no one cared what you wanted or thought should be done to help you.
Imagine that you knew the world wanted to replace you with a stranger in your body.
Imagine that you knew they finally found a way to detect people like you before they were born.
Imagine that you knew what that meant for people like you in the future.
Imagine that you knew what that meant for yourself as you grew older, that you would not meet others like you in younger generations.
Imagine that you knew the time limit this put on your fight for acceptance.
Imagine that you knew your words would be erased.
Imagine that you were like me, and tell me you wouldn't be afraid.

Wednesday, September 5, 2012

Crud. No. Bad.

TW: prenatal screenings for autism, eugenics. 

Apparently people are further along on this prenatal testing for autistic spectrum disorders than I thought. If I actually thought that this testing was going to be used by parents who want to line up all the supports they can using the couple months notice before their kids are born, I would actually find this awesome. I just don't believe that.
That's because I know the statistics for what happened once they could do prenatal screenings for Downs. More than 9 in 10 fetuses that screened as having downs get aborted, and you're kidding yourself if you don't think that autistic ones would get aborted any less.
It's also because I know how autism is portrayed. It's the destroyer of families, a their of children, right? At least, that's how it's painted. And that's scary enough without there being a way to make us never have existed. It's more than scary enough to realize that's what people think when they hear my neurology without knowing that the next generation may well be aborted, and that I will likely face pressure to abort my children. (I have no illusions that my children won't screen as likely to be autistic, since, you know, I'm autistic.)
And it's because I know what that people think I shouldn't have kids because of my being autistic, when they know about it, that is. So... if something that does not guarantee autistic kids but does make it more likely is a reason not to have kids, what would we do with the knowledge that a kid will be autistic before xe is born?
At the end of it, yes, this scares me. And it's apparently on the way, since they're working on a screening method now in Australia based on brain development in utero and on making a method used for testing for genes in kids usable on fetuses here in the US. So be warned. It really is coming, and it may be the cure- no need to cure something that's already here if you can just make it not be here in the first place!

Thursday, August 23, 2012

Abortion and Eugenics are not the same thing.

Trigger Warning: Eugenics, abortion

That doesn't mean they never intersect. But you can support the right of people who can get pregnant to have abortions without supporting eugenics. I don't know why this needs explaining, but I have seen evidence that it does, so I am explaining.

Abortion: When someone is pregnant and does not want to be pregnant, they get one of these. Or sometimes when someone is pregnant and society thinks they shouldn't be pregnant, that someone is pressured/forced into getting one of these.

Eugenics: Preventing people who are considered to have inferior genes from reproducing because these genes "shouldn't be passed on," generally at the societal level. Individual decisions can be based on eugenic principles, but it actually being eugenics at the individual level is iffy.

There are four categories here: Something could be abortion AND eugenics, or it could be abortion AND NOT eugenics, or it could be eugenics AND NOT abortion, or it could be NOT abortion AND NOT eugenics. I'm writing this because someone thinks that the "abortion AND NOT eugenics" set is the empty set, which just isn't so. I can give examples for all four categories.

  1. Abortion and eugenics: Society forces someone with "inferior" genes to get an abortion. Also, society pressures someone to get an abortion because their child has inferior genes (most genetic disabilities with currently extant pre-natal tests.) If it is not societal pressure, but is because the child will have a disability, it is based on eugenic principles, but iffy on actually being eugenics.
  2. Abortion AND NOT eugenics: Person gets pregnant. Person does not want to be pregnant/have a child. Possibly person who has medical reasons for not giving birth, possibly someone who can't support a child, possibly someone who knows how messed up the adoption system is and won't put someone there. Essentially, if the abortion isn't because of the fetuses genes, the abortion goes here. Not the empty set, but actually MOST abortions. And yes, sex-selective abortion is here, not in 1.
  3. Eugenics AND NOT abortion: Legal/ socially acceptable forced sterilization of those with "inferior genes" or making sure these people never have sex. The idea that this sort of thing should be done.
  4. NOT abortion AND NOT eugenics: Your friend walks the dog. I go to school. Most things.
And that is how someone can be pro-choice and not pro-eugenics. It works because category 2 is not the empty set. YAY LOGIC.

Wednesday, May 23, 2012

My Open Letter to Playboy

Trigger Warning: Discussions of eugenics, abuse, murder

Here it be. Feel free to comment with suggestions before I actually send it. You've probably got about a week.


To Everyone Involved at Playboy Magazine;
Since I am female, you might interpret my none-to-happy letter to mean that I am against your magazine in general. Don't. I have no moral issue with your magazine. I just take issue with you paying Jenny McCarthy to pose for you, knowing that her fee will be going to support autism research that autistics do not favor, and in fact, tend to vehemently oppose. (If someone were to negotiate the same deal, but donating their fee to the Autistic Self Advocacy Network or another autism advocacy group that actually helps autistics, I would be applauding you for making the deal. I might even write a thank-you note to you guys, publicly. Just... not for her. Not for her idea of autism research, which has much to do with eugenics, and which can arguably look like attempted genocide using the formal criteria.)
I know you'll be getting more notes like mine. Don't ignore them for being too angrily worded. That would make you just as bad as everyone else who makes arguments from tone (against people whose disabilities mess with communication, no less!) You don't get to keep hurting people just because they told you to stop in a mean way. You have to stop as soon as they tell you to stop hurting them, or as soon as you are aware that you are hurting them, whichever comes first. And we're telling you now. Giving Jenny McCarthy a fee to be donated to autism research for posing for your magazine will hurt autistics. Don't do it.
You probably want to know why I think this will hurt autistics, that or you've already dumped my letter in the garbage or closed the page. So:
  1. She's convinced that vaccines gave her son autism. Vaccine injuries exist, but that's not the same as autism, and vaccine injury is extremely rare. Her son is autistic (or possibly has a disorder commonly misdiagnosed as autism but is also NOT caused by vaccines), not vaccine injured. She wants to get people to stop vaccinating. Vaccinations are how we don't have people getting polio and smallpox, by the way. It's why we don't have mumps or measles. It's why many of the Americans of my generation will never get chicken pox. It's why the flu doesn't take as many of the young and the old as it used to. And it DOES NOT CAUSE AUTISM. Giving money to her brand of autism research is almost certainly going to include giving money to trying to find the non-existent link between vaccines and autism and scaring more parents out of vaccinating their kids. This one actually hurts all people, not just autistics. So yes, this affects you. Even if you're Ok with hurting autistics, which you shouldn't be, don't be dumb enough to hurt yourself.
  2. She wants to find a pre-natal test for autism, and then scare mothers into aborting their autistic kids before they are born. I'm actually pro-choice to the extent that I can't fight to make that illegal (I don't mess with why you can or can't abort because that's a slippery slope) but it smells formally of genocide and obviously of eugenic principles. Each individual parent who makes that decision? No, not exactly eugenics. But it happening at the societal level, perhaps at the 90% that has happened for Down's babies? That would be eugenics. Remember eugenics? That's where forced sterilizations came from. Not cool.
  3. She incites murder. She really does. Do you want to be known for giving money to someone who has incited the murder of disabled children? Going on TV and telling people about how we are tragedies and supporting treatments that don't do anything about the fact that the person is autistic but can (and do) kill the patients is inciting people to kill us.
  4. She has claimed that there are no autistic adults. Apparently that means I don't exist, nor do the writers of most of the blogs I read. Huh. They did a pretty good job at writing stuff for people who don't exist. Some of them have done pretty good jobs of standing in front of me and having conversations for people who don't exist. They've done a pretty good job of protesting Autism Speaks for people who don't exist. I'd say I've done a pretty good job accumulating passport stamps and tutoring math for someone who doesn't exist. But seriously. People don't grow out of being autistic, so that's one of the stupidest things I've ever heard. Maybe she's suggesting that our parents and caretakers kill us before we reach adulthood, which would be incitement to murder again. Maybe she is suggesting that we are never truly adults. (Not sorry. I'm an adult. I've held a job fixing computers, a job as a classroom assistant, a job as a tutor, and a job as a grader, and I've never been fired or layed off. I'm in college with three majors. I'm registered to vote. I can cook for myself. I'm pretty competent, actually, and I am over 18.) Do you want to support someone who says stupid things that piss people off? Why?
  5. She thinks we need a cure. If someone autistic told me they wanted a cure, I'd find out why. If all the reasons didn't actually have anything to do with being autistic, I'd go after society, not cure the person of who they were. And... oh, wait. My autism-related difficulties fall into two categories. The ``Oh, big whoop. I don't really care." category and the ``Uh, that's a problem with your reaction, not with my being autistic. Go away." category. I wouldn't make someone who grew up neurotypical autistic, but I wouldn't let anyone make me neurotypical either. I've heard the theory that if there hadn't been autistics floating around all along, we'd still be living in caves. I could believe it. Do you think you would have been the first to squeeze the udder of a cow and drink whatever came out? Do you think you would have been the first to stick your meat in a fire and see what happened, not knowing if it would be edible after? Do you think you would have been the first to make a fire inside a hut or a cave? I doubt it. But I might have. I'd put money on it that the first people to do those things had autistic traits if I thought there was a way to resolve that bet. So go thank an autistic, and you can start by not hurting us or trying to make sure there aren't any more of us or cure us. That is just a start, though.
So, now that I've made it quite clear that there are actual reasons that you should not support her brand of autism research, kindly follow logic and don't support her brand of autism research.
Sincerely,
Alyssa **** (autistic triple major, researcher in self assembly, and author of Yes, That Too.)

Tuesday, May 15, 2012

Just NO.

Trigger Warning: Ableism, abuse, discussion of selling autistic children, discrimination

So. I saw THIS on Tumblr.
myxolydian:
I just heard there’s a problem where 500,000 autistics will become adults this decade and they can not support themselves and it’s a big problem that they create. And not only that but a lot of them think it’s not a big deal to have autism but also don’t try to work because disabled people get everything for free. Also, there are autistic people who are just dangerous and crazy. And on top of all this there are just more and more of them all the time! I have a solution though. Parents should be able to sell their autistic kids to scientists who will solve the problem of either discovering autism in utero (to nip the problem before it becomes a problem in the future) or discovering how autistics can be trained to be useful or just cure it all together if possible. This would take all the current autistics out of the equation and hopefully slow or even stop future outbreaks. I’d love to hear about scientists doing this.
If you wish I were just making this up, well, so do I. But here's the link to the original post: http://myxolydian.tumblr.com/post/23039840874/autism-problems

It's real.  And he tagged it with ``eugenics." Remember eugenics? That's the one where people who were considered inferior for whatever reason weren't supposed to have kids. Sometimes this was done with forced sterilizations, sometimes by killing the people. Seems to me he's going for research where people would know while pregnant if the kid was gonna be autistic, and nipping the problem before it becomes a problem in the future sounds like suggesting that all autistic fetuses be aborted. Uh, no. (I am pro-choice, but I don't think ``my kid's gonna have a disability" is an OK reason to abort.)

So, a point-by-point:
1) You're assuming it's a problem that 500,000 autistics will become adults this decade. It's a whole lot better than 500,000 autistics being killed by their caregivers this decade. Becoming an adult is a normal part of life.
2) Where did you get 500,000? It might be true- I don't know. But sources would be nice, since people tend not to agree on the prevalence of autism.
3)I actually do think being autistic is kind of a big deal. I just don't think it's a big PROBLEM. There's a difference. (Building a space colony on the moon would be a big deal, but it would be awesome, not a big problem. Resource depletion is a big economic problem.)
4) Right. That's why I have had 2-3 jobs at a time ever since I started college. I don't think I need to work! Also, that's baloney. We want to work and you guys wont hire us. When you DO hire us, we get discriminated against in the workplace. (If you're hitting us on social skills/eye contact, not our ability to do our job, which is often completely unrelated, it's discrimination. If I were to be fired as a grader because I don't look the person I grade for in the eye, it would be discrimination. If I did a bad job grading, it would not be discrimination. Most of the problems we have with getting jobs are discrimination.)
5) Everything? If by everything you mean caregivers who are often abusive, substandard medical care where doctors will ignore allergies that are on our charts, all trappings of poverty, lack of self-determination, being treated as intellectually deficient as opposed to simply having trouble communicating, and being talked about as if we are not hear, then yes, we get everything for free.
6) There are also non-autistics who are dangerous and crazy. Studies show time and again that no matter how many anecdotes you toss at it, autistics are disproportionately victims of crime, and disproportionately not the perpetrators. That goes for mental illness in general. There will still be anecdotes, since that doesn't make it zero. But... if we're going for statistics, you are much more likely to hurt me than I am to hurt you.
7) Yeah. Rate of diagnosis is going up. Rate of autistic spectrum disorders themselves (of being autistic, weather or not you are diagnosed)? We're not so sure, and there are plenty of science folk who suspect NOT.
8) You are talking about selling a living child to science in a country where people can't be bought or sold. WHAT?
9) And what are these scientists going to do? Autism research doesn't involve killing the autistics, last I checked, largely because killing people is illegal and wrong, and autistic PEOPLE are PEOPLE. And scientists doing human research don't own their research subjects. Autistic kids already participate in research fairly commonly.
10) Aborting a kid because he/she is going to be autistic isn't cool. Remember, I'm doing research with possible applications to a bunch of things, including imaging, which relates to cancer detection, and I'm autistic. Gasp! I'm autistic AND useful. Halt the presses!
11) Trained to be useful? I do believe I just addressed the part where I am ALREADY useful. I also make designs people tend to think look really cool, and I am a pretty good math tutor. Like, can tutor for high-level classes I haven't even taken yet and have people prefer me to the person who is taking that class kind of good at tutoring math. Maybe you could train society to not care if someone is looking you in the eye if they're doing their job properly instead?
12) Yeah. I think I may have mentioned my issues with a cure. If you are autistic and WANT to be cured, I don't understand, but I also know that I am not you. I won't get in your way. But if you want to cure me, you are in for a fight. I will go for the non-violent methods first, but if push comes to shove, I am fighting to incapacitate. And if it's permanent, that's just too bad. You should have respected my self-determination.
13) And why do you want to take all the autistics out of the equation anyways?
14) Outbreaks are for diseases. Autism isn't a disease that gets transmitted person to person. You're born autistic or you aren't, but a lot of people don't get this because the ways we're different don't show up right away. So, autism isn't an outbreak or an epidemic.
15) It takes all types. Autistic is one of those types. Wasn't it Hans Asperger who said that a touch of autism was essential to success in arts or sciences? So one of the original researchers thought it wasn't ALL bad. Again, GASP.

Yeah. I'm  just going to put it out there that I disagree with this person on all counts and that this person uses logical fallacies/ bases arguments on untrue statements.