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

APA: Hillary, A. (Year Month Day of post.) Post Title. [Web log post]. Retrieved from

Friday, August 31, 2012

More people calling autism an epidemic...

Trigger Warning: Tragedy model for autism, mostly.

The autism generation: Why are so many children born autistic?
AKA let's make it all about kids, let's act like autism is a new thing (and yes, I can explain why diagnosis is going up all around the spectrum just fine with improved diagnostics by pointing to autistic adults who are non-speaking and were not diagnosed as children. People thought they just had mental retardation, mostly,) let's compare finding out your kid is autistic to getting shot because everyone knows autism is such a tragedy, let's insist that most of the "high functioning" people just have personality quirks and aren't really autistic (not sorry, but I'm autistic and hate functioning labels and do not just have personality quirks,) let's panic about the 10th kid you know having a formal assessment when you are hanging out in the autism-heavy area of society- that is where autistic go, because that's where the services are. Let's just do close to everything wrong that we can.
They actually did get a couple things right, but not much. Like:
  • Oh hey, we're asking why so many are born autistic. Which means they get that we're already autistic when we're born.
  • They link to an article with the joys and challenges of raising an autistic child. I don't really want to read it because it's probably going to be just as bad as this article, but they did include joys, which is less end-of-the-world sounding.
  • That's really it.
Which isn't much when you look at how much they did wrong. I mean, they are talking about it purely as a kid thing. They seem to be going with the tragedy model and then saying that the people for whom it is not tragic aren't really like the people for whom they expect it to be tragic. (Amy? I figure you probably have better things to do than bash an Australian article, but I've seen you write about how you don't think you're a tragedy.) They talk about how diagnostics could not possibly be responsible for the increase when it is actually pretty easy for them to be the increase. Oh, and apparently being autistic means not being "fine." Which is a problem. We're fine. We're just running a completely different brain system, which won't always get along with your brain system. Also, from whence comes this doubling every five years? I need stats for that one. With SOURCES cited. All in all, seems like a fairly typical awareness piece that I would like nothing more than to never see written again. Oh, and I doubt the kid gave consent for his picture and full name to be up on the internet with the fact that he's autistic, considering that he's THREE. If his mother thinks it's a good idea while she is still in tragedy fear mode, then I don't think she should be the one giving that consent, because she's clearly not thinking about the possibility that it could ever matter. It could. We grow up. We often do look for jobs and relationships. Employers use Google. There is a REASON my last name isn't on here.

Thursday, August 30, 2012

Advice to the parents

Trigger warnings: I mention ABA, Autism Speaks, and the abuse/murder/infantilization of disabled people in passing.
Stay away from Autism Speaks. Seriously. I've talked about what's wrong with them from the perspective of the autistic person before, and so have other people. But they won't actually be good for you either.  They will make you feel better short term, and you will meet other parents in the same boat as you. The cost, however, will he always seeing your child through the lens of tragedy that they portray autism through. I have said how it's not about you, but about what's best for your child, but the two desires agree when we talk about the need to stay away from Autism Speaks, because they will make you feel hopeless just as much as they will make your child feel broken and wrong.
Approach all therapies with caution. The biomedical ones are generally useless, and sometimes actively dangerous.  Applied Behavioral Analysis (ABA) is not a therapy itself, and the therapies based off it range from very good from very bad, as do the practitioners. One parent talks about how she uses ABA here, and it's one example of using it safely and helpfully. Diet changes only help if there is a medical need for them - removing gluten from the diet of an autistic child who does not have a gluten allergy is hopefully simply useless, though the part where many autistic people are picky due to sensory issues (not just kids, by the way -I won't come near mint, anything carbonated, or plain eggs)  means that further restricting their diet could get messy. Essentially, ask yourself if it would be considered OK to do something to a non-disabled child. If the answer is no, chances are that it's still not OK to do, and that calling it therapy doesn't make it OK.
Listen to autistic adults. None of us will be exactly like your child, just as no neurotypical adult will be exactly like your neurotypical child. That's because we're not your child. We are adults. It's also because no two people are exactly alike. We are no exception. In any case, if you talk to many of us and listen to what we have to say, or if you read many of our blogs (typing is often more accessible than speaking - there are those of us who do not speak but do have blogs) you can find what things we wish people had just let us do in peace, what we liked,what we didn't like, what we wish we had gotten help with, what we wish people had known. (Wishing people had let us stim in peace is a pretty common one.) It won't tell you exactly how to raise your child, but listening to us will give you some ideas of what is helpful and what society only wants you to think is helpful.
Listen to your child. We, the autistic adults who have been autistic children and remember it, know a lot about your child's experiences. However, we do not know as much about them as your child does by virtue of simply being your child and living them every day. Your child may or may not speak, but making sure there is some form of communication up and running, one where your child can say "NO!" and "Stop!" at need, is extremely important. The only things that you should be able to let rank higher in good conscience are things that are required for staying alive at all, really. Food, water, shelter, medical care, that kind of thing. Because your child has to be able to tell you what's going on. That doesn't mean your child has to speak, by the way. Behavior is communication. If one kind of flapping means happy and another means hungry and another means no / stop and screaming comes next if the no / stop flap is ignored, that is a rough system of communication. Typing can be communication. That's the idea behind a lot of AAC. Essentially, get some form of communication running and pay attention to whatever messages your child sends.
Remember that your child will grow up. You didn't think we autistic adults sprung out of our parents heads fully formed like Athena, did you? We were kids, and then we grew up, sometimes despite the best efforts of authority figures. (Some of those best efforts were attempts to keep us eternally children by not allowing us control of our own lives. Some were keeping us from physically developing using surgery or neglect. Some were attempts to kill us or let us die. It's not pretty.) The point is that your child will grow up. Your child might always the same supports she needs now, or she may need fewer but still significant supports, or minimal supports, or maybe no supports beyond what you need if you examined your life honestly. You won't know until that time comes, and it's besides the point anyways. The point is that getting to control your own life is generally considered part of growing up, and you need to let that happen, just as you would with a neurotypical child.
The fact that your child is autistic does not automatically mean that she can never be left alone. You know how the are some neurotypical ten year olds you would leave home alone for a couple hours and some neurotypical twelve year olds you wouldn't leave alone for five minutes? Autistic children vary the same way. Plus there is the part where a lot of us have weird sleep schedules, which means that you won't be getting enough sleep until it is safe for her to be the only one awake at home if she's like that. Being autistic is for life, so being safely alone is pretty useful. And yes, it can be done. I know one person who started going outside to do laps around buildings that were too loud when she was eight. I was able to go to China alone when I was sixteen. I know of a non -speaking autistic woman who lives in her own apartment. Point is, autistic and unsafe to leave alone are two different things, and you should keep that in mind.
Get enough rest. Schools have a tendency to be problematic for students with disabilities, so you'll probably be doing battle with them on a fairly regular basis. That's tiring. You have a child to raise. That's tiring too. Society is going to have problems with your kid. Dealing with those problems is also tiring. The statistic about autism ruining marriages is completely false, but that doesn't mean getting enough rest isn't important. It's still important to get rest because that's always important. Just remember that having an autistic child doesn't make it any less important.

Wednesday, August 29, 2012

Yes, self diagnosis can be valid.

We live in a world where some autism "experts" think that there is no such thing as an autistic female, or that everyone on the spectrum was caught in childhood, or that autistic people never speak, or that all autistic people are either savants or completely useless, or that autism is an extreme male brain, or that only white people can be autistic. And in the USA, at the least, evaluations can cost into the thousands. Not that a multi-thousand dollar evaluation can't end with "You have some traits, but *insert group here* autistic people don't exist. It can. And free services for evaluation tend to be one of the following:
  1. Nonexistent. Nothing to do here, unless you know how to create something that doesn't exist.
  2. Specific to a group you aren't in. Might have an income range it caters to, and someone just above that might not be able to afford a paid evaluation.
  3. Long waiting list. Cause there are a LOT of people who could use the dx, but can't afford the paid services. It can take months or years to be seen at one of these.
  4. Biased. The people doing the evals here can have all the same problems that the "experts" have. 
So getting a diagnosis officially with a piece of paper and everything isn't always possible. It's also not always a good idea. ADA and anti-discrimination laws and all, discrimination still happens. An autistic man was denied a heart transplant largely because of his autism recently. A hospital said it wouldn't perform a kidney transplant on an autistic girl using a kidney from a matching relative who was only offering it to her. Autistic people get neglected, abused, harassed, killed on a fairly regular basis. Being diagnosed isn't always safe.

That doesn't mean that self diagnosis can't be done wrong. It can. Declaring yourself autistic after one internet quiz just doesn't work. Most of the quizzes are rooted in false stereotypes and theories. The Aspie Quiz is based on the idea that autism=neanderthal genes, last I heard. Besides the fact that correlation does not make a diagnosis. It just doesn't. For successful self-diagnosis, you need to understand the entry in the DSM. You need to understand what does and does not count as a clinical impairment, what is and is not a coping method which covers up a trait on the list, and what biases you and others around you may have. You should read what other autistic people have written about what being autistic is like, from all around the (not linear) spectrum. You should talk to autistic people about why you think you might be autistic (autistic people who are OK with self-diagnosis as a concept at the ones to go to here, by the way.) Research research research. Because it's not as simple as one evaluation. You need to somehow manage to evaluate yourself without bias after teaching yourself how to do an evaluation. It's not easy. But when someone does put in the work involved, yes, it can be valid. (Also a lot of these people wind up with a really good sense of if someone else is or isn't autistic, because they kind of just taught themselves how to evaluate for autism.)
I'd be just a wee bit of a hypocrite if I took a stand against self-diagnosis, since I was writing here as an autistic triple major for a couple weeks before I actually got a diagnosis. And I wasn't any less autistic during those couple weeks than I am now. I just didn't have a piece of paper that said my brain is wired the way it is. Which is a kinda sucky reason not to be able to talk about how your brain works, when you think about it. So while I will totally talk to folks who decide they are autistic on the basis of one internet quiz and no research to explain why that's not enough, if you do your research and conclude that you are most likely autistic, I won't be the one who says "NOOOOOO you can't be autistic because you don't have a piece of paper that says you are." I might be the one who takes the time to talk through why you think you're autistic while you're doing that research, if you decide you want to ask me for that, though.

Tuesday, August 28, 2012

A seller of MMS had his business closed down

 Trigger Warning: We are talking about MMS here, which some people think cures autism.

When a 'Miracle' Meets the FDA talks about it. Don't read the comments, by the way, unless you want to read people talking about how wonderful MMS is and how it's only not accepted because Big Pharma can't make money off it and how it heals everything and all kinds of unscientific things. (It's pretty much bleach, so it really does have some disinfectant properties. That doesn't mean putting it in your eyes or drinking it is a good idea, and between reading the comments and reading the article, I can tell that people have done both.)
There is not direct reference to the fact that MMS has been used by people to try to "cure" autism in this article, but they do mention that it has been touted as curing everything from malaria to ear infections.

Science based medicine posted an article in which they pointed out false advertising about MMS, and it seems that most supporters of MMS are the same people who think that Big Pharma is out to get us by keeping us sick and giving us drugs that make us need other drugs. (Actually, Big Pharma does seem to like medicating things that don't need to be medicated, like giving drugs that are supposed to keep autistic kids from flapping, but the fact that they are still doing vaccines, which don't actually make much of any money, suggests that they are not quite as obsessed with keeping everyone sick as they are obsessed with making everything that people already have seem like something to be treated.)

Anyways, I thought people might like to know that at least one person trying to sell it in the USA is in major trouble, and it is illegal in Canada as well. Mexico, however, does still allow MMS, and the ingredients can be purchased legally so far as I can tell, so there isn't really anything to stop a person from making it themself.

Monday, August 27, 2012

Don't make me repeat a year over social skills.

Do you think that social skills are a good reason to hold a child back? I don't. And here's the thing. It happens. As far as I can tell (getting good information on what really happened to me in the kindergarden through 4th grade range can be tough because it was a while ago and what I remember, what my dad remembers, and what my mom remembers are three different things that sometimes contradict) my school wanted to do this to me either for repeating kindergarden or for repeating first grade. I know they wanted me to do nursery over when I arrived because I only made the cut-off by five days and had iffy social skills. My parents were pretty good about advocating to get my academic needs met until I could do it myself and then about being willing to be the cavalry to call in when the school didn't listen to me, so this didn't ever actually happen, but I know the school wanted something like it at least once. And the time in first grade? If the part about wanting to hold me back is accurate, they wanted to do it partially because I did not have the social awareness to realize that the cube root of 125 was not an acceptable answer for "what equals five?" in a first grade setting. Chances are, I really didn't have that awareness. Even if I did, I know I was sufficiently bored that I wouldn't really have cared. That's not the level of math ability that belongs in first grade math, no matter how old or young the kid is physically, socially, and emotionally. But... the answer isn't to hold the kid back to get that social awareness. It's to put the kid into academic environments where that kind of thing is hopefully expected, or at the least acceptable.
I'd say this kind of thing fits in with the refusing to skip people grades because it will be harder for them to make friends thing, which isn't true in most cases, and which isn't something the kid actually cares about even more often. Making friends off of shared academic interests isn't that hard to do as long as the people invoved are at similar academic levels. Study groups can turn into groups of friends. Comments that reference academic material in passing are more likely to be understood. And some people don't want to have huge numbers of friends. They think one or two is enough. And finding one or two at the geek table just isn't that hard for a grade skipped kid. Especially if grade skipping is common enough that most years have more than one- they are fairly likely to bond over this if they're the types where common experiences help them bond. That's most people last time I checked.
At the end of the day, the problem is our obsession with normalcy. Being normal is not necessary to success or to survival unless people decide that oppressing people (yes, when it goes to the point of parents killing their autistic children and society expressing pity for the parents, not the dead children, it is oppression) for being not normal is OK. If not-normal is OK (like "just weird" sometimes is) then things can get done. The point of school is at least supposed to be to get an education, and denying someone that education because their social skills are off is not going to magically fix their social skills. It's going to piss them off, which may well make the social skills even worse.

Sunday, August 26, 2012

"Do you still live with your parents?"

I hate to admit it. I like this better than assuming that because someone has some sort of disability, they must live with their parents for their entire lives. Still, it's not a good question to ask. Would you ask someone who didn't have any sort of disability if they still lived with their parents, assuming they were old enough that society says they shouldn't be? I hope not. It would be kind of embarrassing for the person if the answer was yes and they didn't want to be still living with their parents. But people ask people with disabilities that kind of question on a regular basis. Guess what? Some people with disabilities DON'T live with their parents. Sometimes it's because their parents were abusive, sometimes it's because they grew up and moved out in the same progression society expects of people without disabilities, sometimes it's because they can get whatever services they need somewhere other than living with their parents and that's what they prefer. I happen to know three non-speaking autistic adults, all of whom need a good bit of services, none of whom live in a group home or with their parents. One has her own apartment. One is engaged. At least two have presented at conferences. Because I am not them and have never been there when they were asked, I do not know what their reactions to being asked if they still live with their parents would be, but I'm fairly sure from what I've read on her blog that the one with her own apartment would not be pleased. I know I would not be particularly pleased, and I am young enough that it would be considered OK for me to be living with my parents at least some of the time even if I weren't on the autism spectrum. (I'm in college, traditional student, age what you would expect for that.)
Good rule of thumb: If you wouldn't ask a person without disabilities a given question, then unless you have asked for and gotten permission to ask specific questions about the persons disability, you probably shouldn't ask a person with a disability either.

Saturday, August 25, 2012

There is no such thing as too successful to be autistic.

Really. There isn't. Know why? It's actually pretty simple. There is such a thing as so good at the things you can do that no one cares about the non-essential stuff you can't do. The level of good that it takes seems to be much higher if people KNOW you have a disability, which is completely wrong. But as long as no one with authority to set standards for performance know about it, that level of good is pretty achievable.
And if you're trying to argue that someone is too successful to be autistic, chances are that other people have thought the same thing, assumed they were just weird, and been OK with their autism-related deficits because of that. It's a bit of a self-fulfilling prophecy, in a way.
In the end, being successful and autistic in the society we live in depends a lot on passing. Not necessarily on passing for normal, which I can't actually do, but passing for not disabled, which is different, and which I've been doing for years . Passing for "just weird" lets a lot slide, and people being willing to let the non-essentials slide is all it really takes for any person with disabilities to be successful by their own definitions of success.
And as far as autism-specific goes? Passing for "just weird" isn't that unusual as far as I can tell. And there is no limit when the things we aren't so good at are allowed to slide, except perhaps the limit of what we are actually capable of doing. That's not so much a limit on success as a limit on which paths can be taken there, though.

Friday, August 24, 2012

Nanoscience and disability

Nanoscale Science and Technology and People with Disabilities in Asia: An Ability Expectation Analysis

When I saw this, I wanted it to be about people with disabilities doing nanoscale sciency stuff and how this gets along with the expected ability set vs. the abilities we actually have and accommodations that are needed, but it was not. (Anyone want to do that study? Please?) I wanted it to be that because I'm autistic and do nanotech research, which makes me biased. It's cool. It's what I do.

It's actually about using this kind of science to help people with disabilities, and it was still a very good paper. I learned from reading it. Essentially, people with disabilities don't get consulted much about how nano research should be helping them (well, how the intended research could help them, what things they want examined, that sort of thing.)
It didn't really get into what people with disabilities actually want nanotechnology to do for them, though. Which is sad. If it had (or if someone did/sent me a copy of) THAT study, I might try to find a way to make what I'm doing relevant to it. Which would be nice. Until then, I will just research nanotech, do math, engineering, and Chinese, blog, and not involve the disability stuff with the other stuff because not really sure how.

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, August 22, 2012

You're not a bad person because you were fooled. Just fix the problem once you know.

For all the people who take being called out on supporting Autism Speaks as a personal affront: It's not.
It's telling you that they are actively harmful to autistic people, and that the correct course of action at this point is to stop.
If you donated to them before you learned: That doesn't make you a bad person. It just means you were fooled. They try pretty hard to fool people. I mean, they have a guy whose job is to deal with social media crises. They spend lots and lots on advertising. They make autism look like a tragic tragic thing that we need to fix, and yesterday. They make you feel REALLY AWESOME and like you're helping people by supporting them.
The problem is that you aren't. You're paying for advertising, and you're paying for offices in expensive areas, and you're paying the salaries of executives, and you're paying for research that many autistic people don't care about, and you're paying the salary of that guy who deals with social media crises. 4% of your donation is given back in grants to help actual autistic people, which isn't much of a much. To put in in perspective, Ben and Jerry's (not a charity, and ICE CREAM COMPANY) puts 9% towards charitable causes. That's right. Ben and Jerry's spends more of their income helping people than Autism Speaks does. So if you want to help people, go buy an ice cream. (Go buy Ben and Jerry's ice cream for an ASAN meeting? I bet they'd love that!)
Knowing just these problems (there are more, by the way), is it hard to see why autistic people might not want you supporting Autism Speaks? And if we deal with this a lot, might we sound kind of frustrated when we explain why they actually kind of suck? Yeah. Most of us do. I go in fairly polite (not because I think it's wrong to go in angry. Just because I think having angry, polite people, and politely angry people ALL is a good idea, and I know that angry is covered, and I haven't dealt with so much of it that my polite reserves are angry.) But sometimes, when people don't get it, I will go in with the all caps and say that actually, you are doing something bad, because whatever your intentions might be, AUTISM SPEAKS IS BAD FOR AUTISTIC PEOPLE. Sometimes that even brings them up short enough that they listen. Who knew?

So here's the point: If the people an organization claims to help are coming to you and saying that you shouldn't support them, and they sound frustrated, it's probably because this organization does not actually help them and they are sick of getting ignored when they bring this fact up. It also means that you should not ignore them, call them rude for pointing this out, or refuse to listen because rudeness (regardless of actual rudeness or not- if someone said "Get the $%#@ off my foot!" you might bring up the rudeness, but you would do so AFTER GETTING OFF THEIR FOOT if you're a decent person, and the problems here are much bigger than the problem of someone standing on your foot.) What you should do is listen to what they say is wrong with the organization, think about it, and then, since this is the group of people you went in wanting to help, figure out something you can do to actually help. It's not that hard.

Tuesday, August 21, 2012

More NH stuff

Trigger Warning: Ableism, ABA

At one point, there was a parent who wants a cure and was fairly ableist who I was interacting with. I was aware of this, but was flapping anyways because I was excited about something else. Another autistic person I was with was flapping for the same reason I was. The parent didn't say anything, but we could practically hear her thinking "Poor autistics! They need more ABA!" And so I will take down that sentence because it is not a good one to be thinking or saying in response to flapping.
1) Poor autistics? Really? Two autistic people flapping here. Both adults. One finishing up college and just recently took the Bar Exam. One me. You know, the triple major who does research in a department that isn't actually any of the three majors, is starting a masters program in the fall for one of the majors, and still finds time to write stuff and play sports? That's not a description of two people who need pity. It's a description of two people who are pretty stinking awesome and can credit at least some of this awesomeness to the being autistic thing.
2) They need more ABA? Um, no. I can suppress my flapping just fine. I just decided, as a reasonable person can generally do, that I have priorities in a given order, and that things below point X are not to be worried about. Guess what? Suppressing flapping is usually below point X! There are exceptions, but that was not one of them. When these exceptions come up, I don't flap. Simple as that.
Besides which, ABA does not have to have suppressing stimming as a goal, and I frankly think it SHOULDN'T have suppressing stimming as a goal. Weird as it might be, it has a purpose. Which means that ABA done the way I think it should be done wouldn't do anything about flapping anyways, at which point this would become a non sequitur.

Monday, August 20, 2012

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. 

Sunday, August 19, 2012

It's not an isolated incident.

TRIGGER WARNINGS: Abuse, neglect, murder of disabled people, discussions of such as systematic problems

Police: Caretaker left autistic R.I. woman in hot car for three hours while gambling at Twin River.
And more recently, Autistic teen left on school bus 6 hours. Now we hit Texas, where a non-speaking Autistic 56 year old woman was left in a van for 5 hours (this is summer, she's in critical condition as I write this update, July 25, 2013.) It seems likely that she was locked in. Still Texas, still summer 2013, and we have a developmentally disabled man left in an SUV all day. He was found dead. No charges have been filed.
These are not jokes. I wish they were. A non-speaking autistic 15-year old was left on the school bus in the bus yard for six and a half hours, despite district policy that drivers need to check for students before leaving the bus. The district and union have not provided disciplinary information, so the driver may or may not have received consequences. A service provider for a non-speaking autistic woman left her in a hot car for three hours while he gambled at a casino. She was fired, at the least, but the fact that this happens is completely unacceptable. A service provider at a group home left an autistic woman in a hot van for five hours in Texas summer. Another left a disabled man in a hot SUV where he died. I wish I could call these isolated incidents, but I've seen worse incidents, including a woman pulling her adult autistic son out of his program, not finding a new one, and then killing him in a murder-suicide. She got pity for it. Usually abuses get ignored or excused because autistic people are just so hard to deal with. So when something actually comes up and gets seen as the horror that it is, it is often treated as an isolated incident because the others were ignored or excused. But it's NOT isolated. It's systematic. We have these. We have the eight year old girl who the police say is autistic (district says she has a different disability) who broke her ankle when the bus driver pushed off the bus with her foot. We have the temporary teacher who ground a shoe in the face of a five year old autistic boy. We have George Hodgins. We have the Judge Rotenburg Center, which while recently banned from shocking new students, can still use it's electric shocks as aversives on current students. (It's seen as OK because the students have disabilities. In many cases, they are autistic.) We have Daniel Corby. We have bleach enemas being marketed as a cure for autism. We have news casters suggesting that a mass murder was probably autistic with no evidence. We have an autistic 23 year old being denied a heart transplant largely because of his autism. (These three are links to petitions on the issues, which also have some explanations of the issues. If you think these things are wrong, PLEASE sign.) We have the death of Al Bing. We have Jude, an eight year old whose mother says she killed him out of mercy.  We have Matthew Graville, a 27 year old man who was missing for 4 months and was recently discovered to have been abused and killed by his stepbrother. Apparently his father also took money from his bank account after his death but before the official knowledge of the murder (he died after a beating and was reported missing several weeks after his death.) We have a school bus attendant choking an autistic student with a belt. We have the fact that a mother did kill her autistic child less than a week after "Autism Every Day" came out, a video in which a member of Autism Speaks admitted to daydreaming about driving off a bridge with her autistic child. We have lists of autistic people killed by caretakers and lists of disabled people murdered- the dedication of Loud Hands: Autistic People Speaking is such a list. It's horrible. It's all horrible. No service provider should leave the person they are supposed to be caring for alone in a hot car for hours while they gamble. No one should let a non-speaking child spend the day alone in a hot bus due to not checking. No person should be considered a saint for putting up with a disabled family member despite having abused them, having eventually not dealt with them, having eventually murdered them instead.
All of this said: A service provider left a non-speaking woman in a car for three hours while she gambled. She claimed that she just went in to use the bathroom, but the casino cameras show that it was three hours and that she gambled. She clearly expected to get away with this. She may have gotten away with this before. A bus driver who was supposed to check for students before getting off didn't, and a non-speaking autistic boy was left for hours. We don't know if the driver got away with it because the union won't tell us. A service provider left a woman alone in a possibly locked van for five hours and doesn't even have an excuse of what they were doing. These are horrible incidents. These are not isolated incidents, but a systematic problem, need to be handled as such. We need the world to understand that abusing or neglecting or murdering an autistic person is harming a person, not a somehow not quite a person because of being autistic person-ish thing. We need this sort of thing to stop, and we need it to not start again, and we need ways to make sure people are held accountable when it happens. Because more often than not, they aren't.

Saturday, August 18, 2012

And now I talk about the Autism Summer Institute

A good friend of mine was at the Autism Summer Institute at UNH. It was also her birthday close to this, and we don't live particularly near each other. She planned to have a birthday dinner one of the evenings at this conference. She invited me. So I hitched a ride up with another conference goer, and I slept on this friends floor while at the conference. I'm kinda a broke college student, so that's how I saved a decent bit and made going to the conference affordable.
Anyways, from the beginning:
The people I went up with did not realize that events started Monday morning, so they didn't get to school to pick me up until about 12:30pm. (They had planned to be earlier than this, but were running a bit behind schedule.) The strap on my duffel bag broke while I was running out to meet them, which was annoying. On the way up, we stopped at a Subway to eat, since people need food. We got to UNH around 4pm. My friend came down to meet me. She was not speaking at the time, but she is a very fast typist. I mean, I can do 60ish wpm, sometimes more when I'm on a roll. She falls somewhere between 120-180 wpm. That's getting into the range of how fast people TALK. So a laptop was quite handy, but it didn't really interfere with communication. She showed me a chapter from one of the novels she was working on during this time, and we talked about stuff and things and things and stuff. It was pretty fun, though I wish that the stuff that caused her to go non-speaking hadn't happened.
Conference officially stuff ended at 4, but a reception started at 4:30, so around 4:45-5, I went downstairs. I fangirled at a lot of people then. I mean, both co-founders of ASAN were there, and Amy Sequenzia was there, and there were so many awesome people, and yeah. I hung out with some of them, and we had a good time. The conference even put stim toys on the tables. It was pretty awesome. Eventually my friend came down (she was feeling better, and talking was working again by this point.) We discussed food options for dinner, and we went with ordering Chinese delivery. I got Udon noodles for me (yum!) and they even included chopsticks. When the food arrived, we jumped and flapped and shouted YAY over and over. Because we can do that if we want to, and we wanted to. They make the Autism Summer Institute and autistic friendly space, so it was all good. The delivery guy seemed a bit surprised, but we didn't really care.
Post dinner, we watched Wretches and Jabberers, and I assisted a math class since I didn't get the night off. Yay multitasking! After the movie, two of the people who were a big part of making it ran a Q and A session. I headed back up to go to sleep during it, but what I was there for of it was good. We'd see them typing answers to questions a few times later in the conference.
Tuesday morning, I got up, ate my friends leftover rice, and headed down to see Julia Bascoms keynote, which was about  communication and voice, which does not require speaking in the sense we usually think about it. (I fangirled at her too.) And she says my submission is going to be in the Loud Hands anthology. WOOO! Then we had breakout sessions, lunch (more of the leftover rice, since I wasn't about to spend money on conference lunch) and more sessions. I went to the session my friend presented, and then I went back to the room to decompress. Even in an autistic-friendly space, that many people is tiring, and there was still the dinner.
Now dinner. Dinner was interesting. I won't go into too much detail about it just in case someone figures out who the friend is since I don't think she wants loads of details about this, but it was so-so. The autistic people were winful, and the NT friend was pretty cool, but my friends parents are really ableist. They were pretty uncomfortable when I was flapping, and they at least tacitly support the JRC. Which is pretty bad. I helped my friend get through it, and I stuck around while she calmed down after. Post that, parallel play, aka we're all on our computers in the same room, sometimes interacting with each other and sometimes not. T'was good.
Wednesday was more presentations, and I got a free lunch ticket from another friend, so I got conference lunch. Learned a lot, had lots of fun, headed back, stopped at a really slow restaurant on the way, was exhausted when I got back, and fell flat on my face. That is my story.

Friday, August 17, 2012

It went fine.

That telling my adviser what I did all summer went fine. He's happy. He wants me to fix my slides so that they are easier to understand, because communication. But that's really it. (Yes, communicating on topics I only semi-understand is difficult. I don't think that's even an autism thing. I think it's just that it's hard to throw together a presentation on a summers worth of only partially-understood research in a coherent fashion in three hours, even when those three hours are during a time of full energy and not executive function failure.)
But he gave some concrete details on how to fix it, and what further data I should try to get, and we're meeting again on Monday. I've got the weekend to get the data and to fix my presentation. The lab building is locked on the weekend, but the grad students have keys (I'm supposed to ask for one on Monday) and one of them lives close enough to campus that he said I can give him a call and he will let me in tomorrow. Another says she's planning to come in Sunday, and she can call be when she arrives so she can let me in. YAY ways around locked doors. (I did tell them I'm autistic, but I think that they don't believe me/it didn't sink in. I have no idea why. Except I do. I know exactly why it's hard for people to believe. It's because I am too successful to be autistic. There isn't actually such a thing, but people think there is. And I wrote about that, but I've got stuff queued out for about a week right now and you won't see it for a while.)

How my chat with Autism Speaks would probably go

Alyssa: Remember that one time I had oatmeal? That was good.
Autism Speaks: Yeah, but it felt weird in your mouth so you'll never eat it again.
Alyssa: No, that would be eggs. Or yogurt. Oatmeal is fine.
Autism Speaks: It's so sad that you can't eat scrambled eggs.
Alyssa: Not really. Vindaloo is better. Or waffles. I can just not eat plain eggs.
Autism Speaks: Give us money to fix you!
Alyssa: But I'm not broken.
Autism Speaks: So you're not really autistic? Autism is SOOOOO tragic.
Alyssa: Yeah, I'm autistic. I'd just rather live my life than moan about the tragedy I (don't) think I am.

Seriously. On the stuff they are selling at Walmart, they say their mission is to find a cure. Therefore, they want us to be not autistic. And they call autistic people burdens, tragedies, compare us to AIDS, cancer, diabetes, lightning strikes. You know, things that actually kill people. I'm actually toning it down a bit for their end. I know someone who is told to go play in traffic by Autism Speaks supporters for protesting them.

Thursday, August 16, 2012

Wish me luck?

My adviser is back in the US. He wants to meet with me tomorrow to discuss my results. I don't even know if I succeeded yet, really, because I have not managed to get any of my samples under the TEM. But I have data that suggests I may have, and I guess I will make that data look nice, keep working on getting the samples under the TEM to confirm, and let him know that is my current status. Oh, and worry, because no matter how awesome I feel about probable success, I am still nervous presenting it while it isn't definite. NERVES NERVES NERVES. Because I actually have kinda cruddy self-esteem despite knowing intellectually that I am pretty awesome. And that means I am terrified that what I have isn't going to be good enough and that I'm going to be in trouble or get fired, even though I have never been fired from anything ever, and I even did well working in customer service over the phone, though I did get asked to work on my tone, because, you know, getting tone right automatically+being autistic are not best friends.

Wednesday, August 15, 2012

Autism Speaks and Walmart

Trigger Warning: Autism Speaks hiding intentions, cure

I know, I know. I'm late to the talk about this. Executive functioning, remember? That is the last thing I talked about. So, here goes:
They are selling school supplies in Walmart. 6% goes to them, and on the packages they list that they are a non-profit devoted to curing autism. On their website, they edited out the part of the package that says that.
Autistic people are up in arms over this. There is a petition on asking Walmart to stop selling the supplies. They probably won't listen, because hey, it's Walmart, but we can try. (Walmart is evil, last I checked, and while most of the parents who are at lower levels in Autism Speaks have good intentions, I'd be quite happy to call the organization itself evil, so they probably get along great.)
There are critics of Autism Speaks even among those who do want a cure for autism -- whether or not one wants a cure for autism, there is not a cure now, and much of that money could be going to much better activities, such as research on pragmatic topics and issues that affect Autistic people now, or providing services and supports for Autistic children, youth, and adults.
-Autistic Hoya (She does not support a cure or Autism Speaks, just so we're clear.)

And as for me, I don't want a cure in the world we live in today. These are my thoughts on a cure. Basically, if there were to legitimately be no pressure to become neurotypical, if being autistic were actually OK, if it were a choice a person made for themself and only themself,  with informed consent, I doubt there would be many autistics who chose to take a cure, but in that world? If it existed, and they chose it, I would shake their hands and wish them luck. In the world we actually live in, I expect that the cure would be forcibly used on children, would be forcibly used on anyone who receives services, and for any portions of the autistic community who technically were getting it only under informed consent, choosing not to would be used as a sign of incompetence, at which point it would be forced. That means any organization that states finding a cure as a mission is inherently not trusted.
Also, this: Anti-Autism Speaks
Essentially, Autism Speaks is not good for autistic people. They only use autistics who ever did anything cool in their scary numbers and on the occasion that said autistic supports them. If an autistic person dislikes them, they are clearly high functioning. (False, by the way. Here and here are two autistic people who need extensive support and don't speak, but still have major issues with Autism Speaks. Not tokens either. It's pretty common.)
The argument that Autism Speaks qualifies as a hate group isn't that hard to make. I would be quite happy if donating to them carried that same stigma that donating to the KKK carries. They do want to eliminate autism from the gene pool, after all, and I am autistic.Is it surprising that I don't like them?
Given all the issues with Autism Speaks, I think it is safe to say that whatever Walmart might think about what it's doing (they probably think they are doing something great for those less fortunate,) the right thing for them to do would be to take the Autism Speaks school supplies off the shelves. The right thing for parents buying school supplies for their kids to do would be to not buy the Autism Speaks school supplies. If you want to give to an autism charity, give to one that actually helps autistic people, not to Autism Speaks.
So, Walmart. Here's a heads up: I won't be shopping with you until the Autism Speaks supplies are gone from your store. I don't know if I can really afford to do that, but I would rather go without whatever it is I was going to get with you than give money to a corporation that supports Autism Speaks. I encourage everyone who cares about autistic people do make the same boycott if they can afford to.

Tuesday, August 14, 2012

Yes, people are that gullible

Ever heard of the DHMO hoax? Well, people actually fall for it. College students who have taken biology (and probably chemistry, given that most bio is molecular bio nowadays) FALL FOR IT. So before you say about anything, "Oh, no one is that gullible," remember DHMO. Yes, we are that gullible. That's why we have things like anti-vaccination people suggesting that chelation is a good way to detox from a vaccine, and it's why people still think vaccines cause autism (They don't, BTW), and it's why people try things like bleach enemas to cure autism. It's why urban legends refuse to die. It's probably a big piece of why most privileges work the way they do. People are naturally inclined to believe what they are told. It's just how the world is. I won't claim that I never fall for annything, because that's just not true. But I will point out that I am not scared of all chemicals because I am aware that water is a chemical too. I'm scared of ones that could kill me in doses that science says could kill me. (Yes, that means that the idea of drinking two gallons of distilled water scares me, or it would if I rated it as likely to happen. I also understand statistics reasonably well, and know that causation and correlation are different things.)

Monday, August 13, 2012

Executive functioning? What's that?

Apparently it is something I have trouble with. I know X needs to get done, and that Y needs to get done, and once I get started, I'm totally good. But remembering that it needs doing at a time when I can do it, actually starting, managing my time properly? Not so much. I have bursts of "DO ALL THE THINGS" time, like right now seems to be, and I have times when if it doesn't relate to an autistic obsession of mine, it's probably not getting done, and even if it is, I might not have it together enough to remember. The physical aspect is a non-issue. I'm actually a slightly- faster than average typist, which means that I can do most computer related stuff slightly faster than most, and much faster once you take into account the fact that I actually know how computers work. I have pretty good stamina. Really, I am extremely close to being autistic and NOTHING ELSE. (I say close because I've got some allergies, mild eczema, sensory weirdness, and apparently executive functioning issues. The sensory weirdness and the executive functioning seems to be sufficiently common that I'm not sure they really count as additional issues, though. Oh, and flat feet, plus my fine motor skills are cruddy at speed and my not walking into walls skills are crud, period. Still, not much of a much.) Essentially, there is nothing besides executive functioning failure or possibly depression that would have the effect I'm talking about, and depressed I am not. So logically, it must be executive dysfunction. Woooo knowing what the difficulty is. Now to cobble together the executive functioning to SOLVE it. Except.... whoops. That woule be the executive functioning I lack, wouldn't it?

Friday, August 3, 2012

The way I pass

Because I do pass. I don't pass the same way that many people try to teach their kids to pass, by suppressing all stimming, forcing them to actually look people in the eye, and making them act neurotypical. I don't do that. I frankly don't think I could do a very good job at any of them. I can fake eye contact well enough that people can't tell the difference, and I can stim in less obvious ways. That's about it.
So here's what I actually do:

I get done what I need to get done, and I function, and I don't mention that I'm autistic. Interestingly enough, people tend not to put the pieces together, with the occasional exception when I say the words "sensory weirdness" or "sensory issues," or if the person has Autdar. But people who have good Autdar tend to be the ones where it's OK if they know.

This works because people don't know much about the autism spectrum. They often think that being on the spectrum means you can't really do anything, and that's not true. They often think that autistic people who are really good at something are only good at the one thing, and are usually savants. Also not true. People think of autism as applying to children (kids grow up!) and they think about autism as a boy thing. Between all those, no matter how many autistic traits I show, people tend not to figure it out.

Example: I am doing nanotechnology research. Stuff my adviser has seen:
  • Me not even faking eye contact.
  • Me flapping. A lot.
  • Me otherwise stimming.
  • Me completely missing sarcasm and jokes.
  • Me SAYING that I don't get sarcasm and can't tell when people are joking.
  • Me not understanding the concept of saving up hours from one week and applying them to the next as SOMETHING YOU COULD DO because that's not what we're supposed to do in the RULES.
  • Me showing all the classic signs of sensory overload when the department played soccer on the quad and I spent about a minute playing offense.
  • Me actually mentioning a sensory issue.
  • Me perseverating.
  • Me taking apart some of the purely mechanical things to see how they work.
  • Low-level echolalic tendencies (didn't interfere with communication or anything, but noticeable.)
Yet he has no clue. In fact, if I told him, he'd probably be surprised, because people don't just figure this stuff out, apparently. That's how I pass. I act as autistic as I want, and let people fail to put the pieces together.

Thursday, August 2, 2012

Some things really are social constructs.

Like race. Really.
Between different races, there are some very small genetic differences. Like skin color, hair color, hair texture, eye colors, sometimes average heights, that tendency for sickle-cell anemia to be way more common in groups from areas where malaria is prevalent. That much is genetics.
What we do with it? Not so much.
None of the tiny genetic differences we've found explain race dynamics. How would darker or lighter skin make you inherently smarter or stronger or better educated or anything besides better adapted to an area that gets more or less sun when sun is the way you get Vitamin D? Simple: It doesn't.
Since race dynamics are clearly not based in science, it's time to look elsewhere.
The idea that it is a social/economic/political thing holds up.
Europeans (white people) went to other areas, like Africa, and for religious reasons, felt that they were superior and needed to civilize the people there. That would be social. They came to the conclusion that having a different religion and a different way of life made people inherently less. That would also be social. They came up with systems which were highly oppressive under the guise of civilizing/helping these "savages," but which mostly seemed like a way to exploit these people. That would be economics saying it's good for them, politics and social systems backing it up. They deprived people of education and then turned around and called them too stupid to learn. That's social and political there. They made sure people were too poor to go to school. That's social and economic. Bit by bit- each thing is social, economic, political, or a combination.
So yes, the race dynamics of today are a social construct. That doesn't make the effects any less real. Oppressions are nearly always social constructs, and they're ALL REAL. Calling it a social construct is not the same as saying it doesn't exist. It's the same as saying "There is no scientific reason that it needs to be this way," so far as I can tell. And maybe it's a hint that it SHOULDN'T be that way.

Wednesday, August 1, 2012

Don't Look Past My Autism

Don't. Revel in it. I do. Because it's kind of the way my entire brain is wired. If you consider the sensory processing issues to not actually be separate, then you can toss in the rest of my nervous system to boot.
Don't look past the way my brain is wired, the way I think, the person I am inside. What's left if you do? A pretty body, maybe. Well, more like an athletic healthy one for me. Or maybe it's a body that's ALSO disabled. Who knows. The point is, if you take away the brain, which is, you know, autistic, there aren't too many traits left that I really want to be the reasons people like me.
So don't look past the autism. Realize that those parts of my personality that you like? Those are part of the way my mind works too, which means they are part of my AUTISTIC brain, and you could argue that they are part of the autism too.
When you say that I'm really cool when you look past the autism, you're either talking about traits that I REALLY, REALLY do NOT want to be the reason you think I'm cool, or you're looking past one set of traits you assume to be autism related to find another set of traits that are probably also autism related but that you happen to like.
And of course, there's that whole idea that needing to look past a disability implies that it is a bad thing or a less human thing. That's really ableist. It's not cool. So even if you think looking past a disability is a good thing, no. It's not. Looking at the whole person, including but not limited to the disability, is a good thing. There's a difference.

BTW, I stuck this over on the Autistic Hodgepodge page too. Because that one post saying ``Hi!" felt kinda lonely. Anyone want to add something to it? Doesn't need to be about autism or anything, just needs to be written by someone autistic. Or want to get involved in putting together such a hodgepodge volume, in any way, like maybe submitting stuff?