My Neighbor Autism

When I describe the ways I perceive things, or the reasons why I misunderstand non-autistic cues, when I react to painful stimuli or have trouble understanding something "simple", people will often point to my invisible neighbor autism.

They may give that "ohhh...I see" look that tells me they really didn't see, but rather were imagining, my neighbor autism. They may shake their head, get frustrated, or walk out of the room to leave me to my devices because they don't want to deal with someone who is self-injuring. Then later when talking to a friend over a cup of coffee in the lounge they may say, "Do you know who her neighbor is?"

Sometimes, they say, my neighbor moves in, and then in a hushed, whispered voice, say, "She lives with autism, you know."

The fact is that I have no neighbor called autism. But that is not what disheartens me most. It is the fact that people tell me - and not always overtly - that I ought to be ashamed of that neighbor. There are a few things I would like these people to know:

It is not more politically correct (or dare I say - Appropriate?) to address autistic people as "persons with autism". The rationale for this is that in using "person-first" language, you are not defining the person by the fact that they're autistic. It is supposed to be an acknowledgement that - yes, we really are human just like everybody else.

All this sounds very nice and good and all. But it's not that simple.

That and besides, political correctness means nothing if that's the only way you attempt to respect someone. For instance, it doesn't matter if you say "mentally challenged" or whatever is the latest term in preference to retarded; if you treat the same people as a nuisance or an embarrassment then your two cents of political correctness have been wasted.

The fact is, using an adjective descriptor of a person is not itself an insult, a denial of the person's humanity, or somehow supposed to define the entire person. It can be used that way (as in the man who sees a woman upset and says sneeringly, "typical female"), but that's not how it's usually applied. It is usually applied just as a plain descriptor ("I am female", "I am gay", "I am tall", etc.). The fact that the average person would have a much larger reaction to "I am autistic" than to "I am tall" mainly has to do with the fact that most people are not familiar with autistics and the fact that the only knowledge most people have of autistics tends to be skewed to the highly negative perceptions.

It also alarms me that somehow by separating autism from a person that this is supposed to reaffirm the individual's humanity. Perhaps this is part of the ghost of refrigerator mother theories and mythic interpretations of autistics as changelings. Our differing body language, our misunderstanding of non-autistic social cues, and the idea that we are autistic because of cold, un-nurturing mothers, have all been incorporated into the distortion that depicts us as less human.

But the best way to fight this ignorance is to inform people that because we act different doesn't mean we're uncaring or indifferent to people. Not to claim that our imagined neighbor autism really is something to be ashamed of.

The Burden of Children's Health

I was watching the news when they started discussing people who elect not to vaccinate their children, with mention of the fear that vaccines may cause autism.

First of all, it made me sad that people are so uninformed and/or misinformed about autistic people that they'd rather not have one of us as their kids.

Second, I had to fight my natural inclination to blame plain, ordinary human stupidity and paranoia. The fact is that like the burden of proof that exists in a court of law, there is a burden of the health of not only our children, but those of future generations. We each carry a bit of this burden in the responsibility we exercise in our decisions, but there are others whose burden in protecting children's health is far greater than any individual alone.

Yes, the people who decry the vaccines for this connection they claim to have undeniable proof of, they carry a large portion of this (ir)responsibility. I hate it when people lie to other people, particularly those people who lie to parents, teachers, and others who have authority over the lives of children. While I am sure that some of the main anti-vaccine people actually believe what they are saying, there are many who are abusing the concern parents have for their children and using the lack of good information about autistics to this end.

In reading this blog post, I have come to a startling realization: the alternate vaccine schedule promoted, which omits vaccinations for measles, mumps, and rubella (doesn't even include them separately), in leaving children unprotected from measles, would result in 1-2 in 1,000 children infected to die of measles. If every child (or even a majority) weren't vaccinated, that would be a lot of kids overall. Maybe to the anti-vaccine people this is rare, but would these same people consider telling that same thing to each parent of the future children who would die this way?

Likewise, any individual or organization takes a larger share of the burden when they put out negative and misleading propaganda. Being autistic is not a ride on the merry-go-round (however many times we may spin!) but it is not a hell either (though oftentimes we are told it so much that we become depressed and begin to believe that some monster called autism is the cause of our sadness). And showing purely the negatives, and misinforming people about autistics leads to a parent fear having an autistic child more than a dead one.

For even if it was a well-accepted, completely verified fact that the vaccines cause autism, autistics can and do have good quality of life (which is remarkable not because we're autistic, but because the majority of autistics have been abused). A dead person cannot have a good quality of life. There is no opportunity for life. And there is no way to mitigate the disadvantages of being dead.

Funds Lost

As you may probably know, recently Autism Speaks sent a notice from its team of about 30 lawyers to a 14-year-old autistic advocate who had set up a parody website of Autism Speaks. One of the things they were suing for was funds lost (in the amount of $90,000, if I'm not mistaken).

Aside from the obvious irony of an organization that purports to speak for autistics suing an autistic person for speaking out, it struck me as hilarious that they were claiming they should be reimbursed for funds lost. Even if the amount they claimed weren't so ridiculously high, isn't the whole point of speaking out against an organization to persuade people not to support it (which would include financially)?

Yeah, funds lost is kind of a goal. Well, funds lost isn't quite specific enough.

Funds redirected is our goal.

I would be fine with the continued existence of Autism Speaks if they stopped funding genetic research and seeking a cure (that money would be much better spent on services that help autistics today, rather than never). And a name change would be nice, too. Unless they had a significant number of people on the spectrum in positions of real power to guide and direct the organization, they shouldn't claim to speak for us (anyone know of the organization Voice of the Retarded, a parent-led organization that lobbied for institutionalization).

Basically, to claim that your organization deserved compensation because someone else spoke out against your organization and thus people have been persuaded not to donate to your organization, would be like if George Bush sued that website that compares him to a monkey for "votes lost". Absurd, isn't it? I thought so too.

Calling All Advocates

This is my first autism-related video.

http://www.youtube.com/watch?v=S0e8adgO06E

This is a call for responses of why you are active in autistic rights, whether by blogging, or using YouTube, or whatever you do and why you do it. It calls for a multitude of statements from our community as to why we believe the things we do and why we are worth fighting for them.

Here is my response:

We are living in a time where the voices of people long ignored are starting to be heard, if only faintly, for the first time by thousands or even millions of people. This is a movement not only for our rights, but a movement to address questions fundamental to human existence.

I blog because I can't let another moment go by where someone speaks for me.

I make videos because it is through motion and sound I most effectively communicate.

I organize because it is only through solidarity that we can achieve a better world not only for our generation, but for the generations now coming into being, and those I aim to preserve their ability to enter into being.

I make a statement not because I want to, but because I have the moral obligation to do so.

I must raise my voice, or who will defend me when I am silent?

Sick, and Other Thoughts

Club Rush is this week, which means I'm going to represent the clubs I lead (including Gay-Straight Alliance and Autistic Rights Advocacy). Hopefully more people will join and attend this semester, now that I've got things a little more organized.

I got a new magnifying glass from the Braille Institute this Friday, so I can actually read my textbooks now! :) I can now get to a backlog of work I have for some of my classes.

For the Club Rush day, I plan to have at the table a jar where people can put a dollar bill or coins into, to go towards our club's book fundraising drive to donate positive and informative books about autism to the local libraries. I am thinking of calling it Education For Autism.

I also want to hand out stickers, and I intend to have some informative videos playing on my computer. I am also putting together flyers and information sheets.

An interesting thing about being sick, I've noticed, is that it takes longer for me to execute certain actions, such as brushing my teeth or going to the bathroom or fixing tea. My skin is really very sensitive right now, much more so than usual, and it is very difficult to coordinate my thoughts.

Hense the rambling nature of the post.

The other night I got frightened because I had had hardly any sleep, and on the ceiling I saw this circle of reflected light on the ceiling. I couldn't figure out the source, though, so I started walking around the room and the hallway, looking to see if I was blocking out the light source and making the ceiling reflection disappear. Twice I succeeded in this, but it wasn't until the second time that I realized what the light source was.

It was a light from the laundry room, which I soon discovered was bounding off of a CD left on top of the sofa. I put it in between the pages of a notebook, as my eyes would play tricks and make me think the light was moving.

It reminded me of when I was very little, maybe about three or four, and I would sit with these small rectangular mirrors, and bounce light from them onto the walls. My dad would join me, and one of us dubbed them UFOs.

A funny thing about the IEP meeting a few weeks ago -- apparently autism isn't even listed in it! They had just listed Speech and Language Impairment. The actual IEP report also has some other glaring omissions, such as saying that adaptive/daily living skills are "not an area of unique need" (even though I'm 18 and in less than a year supposed to live on my own).

It has some mention of social skills difficulty, and states that I have "difficulty to maintain detailed organization with [my] papers and materials". True enough, at least for the latter, but I find it ironic that the difficulties I have that are quite common among people my age get mentioned specifically, whereas my more unique needs are completely ignored, despite my specific input.

In fact, my only social skills deficit (that I can think of) is in cutting into a group that has already formed. My main thing is with figuring out what and how I need to do things in order to get around. How to maintain daily living skills. Why nobody but me (and occasionally, my parents) has been mentioning these things, which are the most important as I'm going to be living independently, I don't know.

My primary issue: Trouble organizing, I can get help from the tutoring and help center available for disabled students. Trouble getting into groups, might impact in lab work or if we have to choose groups for small discussions, but I can usually get around that by approaching the teacher and asking to be placed in a group.

But there isn't going to be a teacher in my dorm room reminding me to brush my teeth and take showers and eat and drink and do laundry. So far, my efforts in these things, even if starting successfully, have deteriorated and I stop doing them.

And so, being sick, I now factor in the additional difficulties of when I'm sick. These things take longer, and get done with far less frequency, when I'm sick and also alone. I usually spend a few weeks to a month or two out of the year sick to some degree (usually only 3-7 weeks a year of really bad -for me- sickness, which is what I'm in the middle of).

I also missed my astronomy class tonight. It's really too bad, since we're starting on new material, and I would've learned what my grade was on the last test.