Wednesday, April 4, 2012

I Love Autism

(I give permission for this post to be reposted on other websites or blogs so long as credit is given to Arielle Sallee and a link to Living By Starlight is given. Excerpts may be posted, but the post may not be edited.)
There. I said it. I love autism.

I doubt very many people will read this. The ones that do (my family, mostly) probably don't know about the things going on in the autism blogosphere and wider community lately. About "I hate autism" and the murders of George Hodgins and Daniel Corby by their mothers. So to sum up: a few weeks ago, there was something of a blow-up because some autism parenting blog said "I hate autism" and people got offended (naturally, I think), and battle lines were drawn between parents and self-advocates sucked. It just all sucked.

I'm not explaining things very well. I'm upset right now. But the point is that somehow, it was okay to say "I hate autism" to some people.

George Hodgins and Daniel Corby? A man and a boy--the former 22, the latter 4--both killed by their mothers. Both autistic (I'm not 100% about Daniel). And in both cases, the media reporting sympathized with the mother. As if it was understandable to kill an autistic person. As if killing your own child is ever, ever, ever okay. It's not, and some people have said it more eloquently than I have. I will link to some posts at the bottom.

But I have this to say, to this culture of hate, to these parents that hate what their children are: I love autism. I. Love. Autism. I don't tolerate it. I don't put up with it. I love it. I wouldn't change it. It's hard and it's challenging but I don't care.

A metaphor, to explain:

I love being a woman. I love being feminine. I love that my body can incubate and birth and nurture life. I am a goddess-hippy-yay-woman-power person. (And I suddenly have "I've Got a Theory" from "Once More, With Feeling" stuck in my head. Dammit, Joss Whedon.) Anyway, I love being a woman. I wouldn't want to not be one.

And yet, it's hard to be a woman. There's times when the physiology of it sucks. Childbirth is hard, and there is sexism and discrimination and body image issues. It's not a picnic. And I don't think men inherently suck. I like men, and I'm sure many men like being men, and it's hard to be a man sometimes. It's just that being a woman, hard as it is, is part of who I am. I'm happy with it, despite all the troubles.


I love autism. I love being autistic. I love that my son is autistic. I love that we look at the world differently. I love the sensory information I get, the way soft things feel, the way I can go into this trance-like state from music and color that I'm not sure most people can get without drugs. I love that some things, like math and writing stories, are so easy. I love that I can hyperfocus so much on a thing that I can know it inside and out in relatively little time. I love that my son has learned to read before he's talking. I love that I never feel lonely just because I'm alone. I love that my son and I both seem to see things other people don't, and I wonder if what he sees is anything like what I see. I love the insight my fellow autistics have on the world. I love being autistic. I wouldn't want to not be, or want my son not to be.

And yet, it's hard to be autistic. There's times when sensory overload happens. There's times when I miss social cues in the middle of "seeing other things." This happens a lot, actually. I'm still learning to deal with all of this. I live in a society that devalues me and my son in so many ways it's hard to count. I don't feel that it's okay to ask for the things I need to get along in a world that is so different than the one I experience. And to a lot of people, it isn't okay.

I like--and love--a lot of non-autistic people. I don't think being autistic is some special new stage of evolution. I know it's hard to be a person sometimes, period, even when you're good at the social world. But being autistic, hard as it is, is part of who I am. It's part of who my son is. I wouldn't change him, any more than I would change my three "neurotypical" children.

If anybody does read this besides my family, and they agree with me: stand up and say you love autism. Stand up and say this isn't an epidemic. This isn't a burden. This isn't a reason to hate someone or fear them or kill them. This is part of who you are, or who your child or loved one is. This is part of being human, part of the fantastic diversity of our species. And it's not just okay, it's not just tolerable. It's a good thing.

I am observing Autism Acceptance Month. So should you.

Autism Acceptance Day and Month:
The blog
The Facebook event

The posts I mentioned above:
Stop the Murders of Disabled People on Facebook
This is What You Get on Journeys With Autism (Rachel Cohen-Rottenberg)
My Autistic Son's Life: Not Less Valuable on BlogHer (Shannon Des Roches Rosa)
Acceptance and Murder on The Standard Review
Remembering George Hodgins on Illusion of Competence

There's a lot more but these stuck out. I apologize if I've improperly linked anyone.

Wednesday, March 14, 2012

Emotions are a Choice

Our car died on Monday. And by died, I mean dead, kicked the bucket, pushing up daisies. It is an ex-car. We didn't know it at the time--all we knew is that the engine had stopped and there was oil leaking, and Richard had to leave it on the side of the road and walk a mile or two home with my daughter--both of them sick. Sucky situation, all around.

Today we found out from the mechanic that it will cost $4,000 to fix the engine. This is an old car; for $4,000 we could get a better, newer car--if we had the money. Naturally, we don't, nor money, really, for any sort of car at all.Where we live there are no buses for several miles, and nothing within walking distance. Without a car, we're screwed. Well, maybe, but more on that in a moment.

I could have panicked on hearing this. There are things I like to do outside the house, and Richard needs to be able to go job-hunting, and so on. Being house-bound is just not a good thing, nor a desirable thing. I could have been angry at myself or Richard for not taking better care of the car. I could have gotten depressed over the situation, and at the universe for "doing this to me" when my compter had so recently broken down too.

I didn't do any of those things. And what makes this something worth pointing out is that I chose not to. I felt despair and anger and frustration creeping up and went "screw that, none of those emotions are useful. Go away, I have a problem to solve." The energy didn't go away--I just channeled it into solving the problem.

My solution is thus: bicycles. Two bikes, plus helmets, should cost us around $300 or so--maybe more, maybe less. They require no gas and far less maintenance than a car, and it'll get me moving physically, which I desperately need. It's not a permanent solution; when we have regular income, we'll probably get a car. But right now, bikes let us get to the bus stops, and give us a degree of freedom.

Yay solution! I felt better and the nasty energy dissipated, though not entirely. I've been having a general, unfocused anxiety and depression for a while now. Some crappy stuff has gone on lately, but often everything will be fine in the immediate, but I feel dread or sorrow for no reason. In the past I'd have found a reason for this, the reason I'm depressed or angry or whatever, but these days I go... I get depressed. It happens, it's brain chemistry. I need medication and a more active lifestyle, and definitely a better way to de-stress my neural system so I don't carry the weight of getting overwhelmed so much.

Which leads me, finally, to the point of writing this: I have come to view emotions as being, sometimes and to some degree, a thing that can be chosen. Sometimes one is so angry or happy or sad that it can't be denied--and often, in those moments, those are good and healthy responses. I don't say "I chose not to be angry" as if anger is always bad. Anger can give one fire and energy to fix a problem, to right a wrong. Sadness is warranted over loss and hardship. Etcetera.

But so much I hear people say they just feel this way and can't help it, or people want their emotions "validated" or some such--they want me (or whomever) to tell them it's okay to be angry, or happy, or sad. Or rather, that I (or whomever) approve of and support their emotions. Huh? Why? If your anger is justified, it's justified. If it's not, it isn't.

Here's the thing: just because a person feels an emotion in a situation, that doesn't mean that emotion is an appropriate and mature response to said situation. Hell, it may not even be an actual response to the situation. When I get depressed, I'm depressed, and I'm not going to be genuinely happy no matter what I do until the dark cloud passes. There are exceptions, but they don't make the cloud pass on their own. Bipolar folks who are in a manic phase might be happy about anything. And even mentally healthy people do this--they ruminate on the nasty driver who cut them off in traffic and then snap at someone later who did nothing to warrant being snapped at.

What I've learned (and there are studies to back me up, which I'd link if I remembered where I found them) is that deciding "I am going to feel this way" and then acting as though I feel that way does work, to a degree. Like I said, if I'm depressed happiness is elusive, but the more I act happy and productive, the more I get done, and the more I start to feel happy and productive. Then I start doing things that fight depression--getting my diet and meds in order, getting exercise, getting my living space clean, etc.--and then acting happier and productive is easier, so I get happier and more productive and... etc. I've just learned that I have to fake it for a while. I have to look at that unfocused "blah life sucks" and go "no, it doesn't, and I'm going to act otherwise, thanks much."

The unfocused blah isn't going to go away at first. I am going to have moments of feeling awful, moments of feeling tired and worn and overwhelmed. I allow myself to crawl into a blanket and rest, but I treat it like I'm sick, not like the world is awful and life will never get better. That way lies emotional states I swore I would never re-visit. And sometimes, anger or anxious energy can be useful when I can harness them into energy for making things better.

I'm hardly perfect at this, and it's only been very recently that I've really started to believe that I can choose my emotional states. To diverge in a geeky way for a moment: I think going back to Star Trek (I'm playing ST Online and Richard and I are watching TNG on Netflix) has reminded me of how much I've long admired Vulcans. I don't think I'd want to suppress all emotion--I like passion, and anger can be useful, and so on. But trying to step back from emotion, think logically--to recognize that our passions and whims and brain chemistry need not rule us--is a good and useful thing, I think. It is also what I think a lot of "choose to spread kindness" homilies are trying to say--that you can choose to be happy instead of angry, and to spread joy instead of sorrow.

I don't know if I'd go so far as to start spouting homilies. Sometimes, a "negative" emotion is the right one to choose. Sometimes, the world sucks and its ass needs some kicking. Sometimes, the world sucks and you just need to cry. All of that's okay. I guess what I'm saying is that I'm glad I figured out that I can think my way up out of depression, and that I hope anyone that knows me that reads this understands if I maybe don't always seem sympathetic to whatever emotional state is passing through their mind right then. There is one sort-of homily I can support here: what matters is not so much your situation, but how you choose to respond to it.

Tuesday, February 21, 2012

Difficult Admissions

It's been a while. My life has turned inside-out and upside-down, and I'm not sure of what I want to do or be anymore. But the blog title still fits, so I keep it.

I realized today while writing a Facebook post that I need this. I need to sit down, at least once a week, and type these things out. I am going to. And maybe post the link some places and see if anyone else cares to read. Maybe read and comment on other blogs. I don't know... something.

Anyhow, I've been hiding from the world--even the online world--because I'm ashamed, and I shouldn't be. Below is the Facebook post I wrote in which I realized this.

(Begin Facebook post)
So yesterday I forgot how to put my clothing on.

I mean this quite literally. I had taken a shower, and I got out of the shower, and had clothing sitting on the counter in the bathroom. I looked at the clothing, and I could remember that arms and legs went in holes, but I couldn't remember what order things were supposed to happen in. Everything got jumbled up in my head.

This happens a lot, I'm starting to realize. I'll sit around in pajamas all day because I can't remember how to put the clothing on, or I won't eat unless Richard gets me food because I'm not sure where food is or how to cook it. I don't put things away because I'm not sure where they go (and I often lose them if they're away because out of sight is often out of mind for me.)

This seems to happen more often when I'm sick or depressed or stressed, as though my brain just has so much else going on that the basic stuff drops by the wayside. I've learned to cope mostly by going totally overboard the other way. I used to go without eating more than once a day for weeks at a time, but now hunger is a migraine trigger, making it impossible to function without eating. Of course, without anything easy at hand to eat I'll just sit there with the headache, since migraines make it nearly impossible for me to carry out complex tasks. Stupid body.

The big thing that happened yesterday, though, was that I went to Richard and asked for help. I started crying, I was so ashamed. I'm 30 years old... I should be able to take care of myself. But I'm starting to see that in a lot of ways, I can't. Even basic things can be hard, because it just gets all jumbled up, and I spend so much time trying to remember the little things that big stuff like homework or writing (which is even harder to organize) falls away.

I'm not sure what to do about all of this. For the moment I content myself with admitting that I might not ever be "independent." I can't take care of myself very well, and I need to stop feeling ashamed of that. I need to get help--I don't know what yet, but that's something to look into.

I also need to be honest about other things, and that's coming. Slowly. In the meantime, I need to get food and get dressed for today. All of you for whom these are easy tasks, count yourselves lucky. :P
(End of Facebook post)
There will be more forthcoming. I have updates on Morgan and astronomy and my life. In the meantime, I do indeed need to go eat.

Tuesday, September 13, 2011

Scientific Funding in an Age of Fear

Phil Plait, one of my very favorite bloggers, brought up a difficult subject today: how to deal with funding the James Webb Space Telescope. His view is in his excellent article at his blog, Bad Astronomy. My view is pretty much the same: Congress needs to fully and independently fund the JWST and cancel it otherwise, because trying to take the money from other missions will only damage all the missions involved, including the JWST.

For those who don't know, the JWST is the "next-generation" space telescope (that's even another name for it) which is supposed to become the "Hubble of its age" (well, according to Phil Plait, with whom I'm inclined to agree.) It has a whole bunch of features, including infrared optimization and its intended observing position far from Earth, giving us a different angle from which to view the universe. It is, in short, an amazing piece of equipment that could revolutionize astronomical observation.

Phil brings up cost overruns and mismanagement as reasons that he understands why people want to kill the project. I get that. It's a practical stance. But I am so tired of practical, when it comes to science. I am having a visceral, emotional reaction to this, and it's not just because the JWST might be dead before it ever gets off the ground. It's general, and I finally pinpointed it when I started running through all the things in my head that make the JWST something good and useful that we ought to give money to.

See, there's this thing that happens, with science. People want to know why we should justify spending billions and billions of dollars on research. Those same people (usually) don't question if we should spend billions and billions of dollars on health care, or defense, or buying random crap we don't need, or social programs, or what-have-you. Those things, you see, can all be identified as practical things. Things we need, to survive. They may disagree on what's practical to spend money on but pretty much everyone agrees there needs to be some sort of clear reward. "Why are we giving some guy money to go research frogs?" they ask, and laugh, like researching frogs is an utterly useless thing to do. The worst part? A lot, a lot of these people are scientists or science supporters themselves.

And those of us who want research to be funded come up with things like "without relativity you wouldn't have GPS!" and all of the benefits of the space program, and so on. It's a laundry list of all the reasons why science funding is practical, and has "real world" benefits, and so on. It winds up feeling like begging, and it's tiring, and right now, I'm done with it. I'm not saying that there doesn't need to be some feedback from research--that there don't eventually need to be results. Money is limited, I get that. But why is the money so terribly limited? Why isn't science more important to us, as a society? Why oh why is everything about the practicality?

So here is why I'm tired of it, why it makes me want to cry and gnash my teeth and all the rest. There is more to life than survival, and there is more to life than entertainment. Science is about exploration and discovery, and the need for both exploration and discovery are essential human traits.

Last summer, I wrote a research paper about SETI in which I asked the question of whether it was worth continuing the search, 50 years on. I ought to post the paper somewhere--I'm really very proud of it--but the gist of my argument was that humans have always been interested in the possibility of life beyond our own planet, and that the need for communication and connection is deeply and fundamentally human, and the drive to see if anyone else is out there is perhaps the most human endeavor I can think of. It is matched only, I will say now, by "why are we here?" which is what drives our desire to see as much as we can about the early universe. Which, by the way, the JWST is primed to explore: the formation of the first galaxies and even further back.

As a brief aside: when I say I think the need for communication and connection is fundamentally human, I absolutely apply that to all people, whatever their ability to communicate and connect in a "normal" fashion. Just because a person can't speak doesn't mean they don't want to, and just because a person doesn't care about connecting to random strangers doesn't mean they don't feel a deep connection to the people closest to them. Even wanting to connect to animals, plants or the world around one counts in this, to me. I am reminded of the video In My Language by Amanda Baggs of Ballastexistenz, which shows very clearly that language and interaction with one's environment is not always what most folk think it is.

At any rate, we need this. As a species, we need to look up, and out, and imagine what might be, and then go find out. For some people "finding out" involves what is within reach, and that makes their exploration no less wonderful than the exploration the JWST provides. I just say we shouldn't have to choose. I say we should stop staring at the ground, worrying about whether we'll trip, running through our lives afraid of everything. I say we stop, and look up, and remember what makes us great.

I will leave with a quote from Babylon 5, my oh-so-very-favorite TV show, that reminds me of how I feel the world is these days.
"Something my father said. He was old, very old at the time. I went into his room, and he was sitting alone in the dark, crying. So I asked him what was wrong, and he said, 'My shoes are too tight, but it doesn't matter, because I have forgotten how to dance.' I never understood what that meant until now. My shoes are too tight, and I have forgotten how to dance." (Londo Mollari, The War Prayer)
I feel that way, lately. I think the whole world does. I want to see JWST funded, and in a way that lets all the other projects be funded too, but I don't think it's going to happen, because we have forgotten how to dance. It breaks my heart, and I wish I knew what to do.

If you want to help save the JWST go here and sign the petition: or like their Facebook page. Or, y'know, both.

Monday, September 12, 2011

On Religion

Firstly, I've been hermiting this last week or so, for a variety of reasons. It was the second week of my three-week school break and thus a great time to get away from people, and Richard had to go out a lot during the week so I had a chance to be really alone. In addition, the media coverage leading up to the tenth anniversary of 9/11 brought me nothing but pain, and so I pretty much avoided the rest of the internet trying to pretend it was any other week of the year, ever. I understand wanting to hash and re-hash a painful event--I do it all the time, to everything--but there's no closure or solace to be found there, just more wondering "how can people be so awful?"

I played video games instead, or read, and spent one whole wonderful day with barely any stimulation at all. But "how can people be so awful" isn't a question I can easily escape; it's one I run into every time I do venture into the world and encounter stories of people lying, hurting each other, hating each other. Sometimes I can make sense of things from an evolutionary perspective, but far too often it just makes no sense at all. And then I've been playing Assassin's Creed II a lot, and the whole series is full of discussions of religion, and what religion is for, and ethics and morality and... oy. I can't remember the last time a major character in a video game said that their side really wasn't the "good guys." The shades of grey inherent in playing a character who kills in order to bring about peace and free will are not at all avoided.

So, as the topic of the post might suggest, I have been thinking about religion lately. Specifically, my lack of some specific religious practice, and whether or not I need one. I'm sure plenty of people might say "of course you don't!" And some, who I fervently hope aren't reading this post, might lambast me for not practicing whatever it is they believe. I do know what I believe--generally. That's not what this is about.

The thing is, I think that God is a concept that can't be easily hammered down. Whatever god or gods there may be are, by definition, something the human mind isn't going to be able to comprehend right now. I've already answered the question of whether I can be a scientist and still believe in God--of course I can. "Is there a God?" is not a scientific hypothesis, because the question can't be disproven. Did God cause the Big Bang? I don't know, honestly. Maybe so--even if our universe is but one of many, God could have started the genesis of this universe within the larger whole. Or maybe it's more of a natural process. My concept of God does not demand that said being created the universe, or its laws--maybe everything simply is. But whatever's going on, it's not something that science can answer, and things that science discover don't get in the way of there being a God. In fact, it's when I look at the grandeur and beauty of the universe that I feel most connected to God. The reality that science tells me exists is the reality that shows me God.

So, do I need a religion, or can I go on calling myself a religious naturalist? ( for reference) I think the main reason I still yearn for some religious practice is my desire for order and ritual. I've found a great deal of comfort in the trappings of the religions I've tried on over the years, from Christian denominations to neopaganism. To be honest, though--and not to insult anyone, really--far too few practitioners of both Christianity and paganism that I've met have a true desire to use their intellect to explore and understand the world, they're far too willing to accept whatever they're told.

I get that this happens everywhere, but I guess what I'm looking for, if I'm going to adopt some religion or other, is that thinking and learning and teaching be at the core of the religion. Modern druidry offers this--sort of--but it too often accepts the dubious practices of pseudoscience on their face. And then, of course, there's Richard and the kids--if I go one way, do they have to? Will they feel like they have to? So, I'm at a bit of a loss of just what to do.

I have some thoughts on this regard, but they are as yet malleable and not-quite-formed. I will post more if I come to some sort of understanding or decision. What I do know is that I need a framework of some sort. Stay tuned.

Saturday, September 3, 2011

Mental vs Physical Age Video

This video is about how the guy making it has always felt maybe 6 years behind his peers, mentally... and when he turned 17 or so and had to go "out in the world" he started acting much older, like someone in their 50's, and people online would think he was older. Now he feels "young" again but still 6 years behind--go watch, it's good.

I identify with this so much. People always think I am very much older or younger than I am... people thought I was older when I was a teenager although I felt younger inside. Now people who meet me think I'm younger (at school people think I am maybe 20-21 when I am almost 30) and online people have always thought I was older--but inside I feel like I stopped at around 15 and had to become very much older and now I'm picking up my development again! So I feel maybe 16 or so inside now... I wonder if I'll always be 14 years behind...

Friday, September 2, 2011

I passed my classes!

I wasn't expecting to write this post in this manner. I was expecting that I would have failed at least one of my classes, and would be speculating on what to do about that and would there be financial aid problems and should I continue school?

Instead, I find that I passed all my classes this quarter. I haven't done that since last summer. I keep peeking back to my transcript to be sure it's true. I shouldn't have passed. I know I shouldn't. I missed tons of quizzes, I did badly on finals, but somehow I managed to prove that I knew and understood the material and passed every single one.

Short summary: I took an art appreciation class that involved looking at art and discussing it, a chemistry lecture course I'd failed before (I passed the lab so I didn't have to re-do that) and calculus I which I'd also failed before.

On the "how the hell" side of things, I never had many doubts about my art class. Give me papers to write and I'll manage to write something interesting and thought-provoking and get accolades even if I forget the material five minutes after I'm done--especially in a 100-level class where the teacher is barely expecting competency. I'm good at writing papers, and I did both my main group one and my own. Chemistry... my the points I should have failed, but I had that teacher for the lab last time I took the course, and I got a 3.3 in the lab course and I should have gotten a 1.8 or so. I'm thinking either my math is wrong and I did better on the second exam than I thought (possible since I never got the test back through my own fault) or she felt generous and passed me.

Math... I should have failed, but it looks like on August 7th the teacher put in "100%" for my quiz scores, and this made be able to get a 2.8 from my exams alone. I never took a single quiz. I suspect he didn't find time to give them and gave everyone 100% and I just wasn't there the day he announced this. Another reason to go to class, Arielle.

Anyway, suddenly I have this foundation of "look I passed!" I know that passing with such horrid attendance and homework was a fluke and will not happen again. I also know that next quarter is the quarter I get into actual physics classes. And maybe... ooo... research. Real research, for honors credit or publication or even for stipend if my MESA advisor managed to pull out the funds. Yes, let's give the Aspie toys to play with and tell her she get school credit and money for it. Heaven. I've been looking forward to this for months.

So now I know I'll get my financial aid check, I know I'll get a crack at that research... and holy crap I'll likely be presenting at the UW undergraduate research symposium in May and that means talking to people and WHAT AM I THINKING THIS IS INSANE!!!

Hence the dilemma that's been looming ever since I put away the lithium bottle and went "I can't medicate away my problems." Can I do this? I want to, badly. I want to be an astronomer so badly it hurts sometimes. I avoid science things because I know I will perseverate and never come out, and if I fail I'll be so terribly disappointed. Richard (my fiance) has promised not to let me completely disappear so, so...

I will do this. I will. But it's hard, and I can't articulate why right now. It's tied up with disappointments and the fallout from my social problems, and I will manage to type coherently on it soon enough. For now... I passed! I PASSED!! Yaaaaay! I need to celebrate somehow. :)