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.

Tact and Advocacy

I sincerely would like to apologize about some of the insensitive people who claim to speak for the autistic community but in truth don't.

I am not strictly describing pro-cure NTs. There are also autistics who get on my nerves because not only are they narrow-minded, but they show no interest in expanding their understanding and perspective.

Of course these people are in the minority. It is unfortunate, however, that Alison Tepper Singer can be put on a video claiming to raise "awareness" as she describes the only reason she didn't kill her autistic daughter was because she had a normal daughter too and even be praised for her "courage", while a few narrow-minded autistics who state their views without presenting them in any kind of logically comprehensible OR emotionally sensitive way are demonized as "nasty self-advocates who want to take our kids' services away."

Like extreme views of anything, people are far too prone to get rigid and nasty about them, autistic or NT. I do not consider myself a "radical" or "extremist" for opposing the idea of cure. I tend to define these terms by the way a group or individual goes about achieving their goals. Of course, there are cases when the goals themselves are extremist and dangerous: who would argue that the advocacy for genocide, racist Social Darwinism, or war-mongering are not of themselves dangerous? Likewise, just because there are dangers to the ways that religious fundamentalists, such as of Christian and Islamic denominations, doesn't mean that everybody who is Christian or Muslim advocates for death to America or persecuting gays.

I hate it when autistics who don't have much of any of the disability aspect try to speak for everybody just as much as I hate it when non-autistic people try to speak for us. It's just no use.

On the Internet, I have encountered many pro-cure people who viciously attacked me even when I wrote about understanding that it can be very difficult for parents; my NT mother has had much trouble with me, and I do not have as many special needs as some others (such as, I can't brush my hair, but I can do toileting; I can speak, but often get overloaded and can't).

Remember everyone: assholes are assholes. Some of them happen to be autistic, some of them happen to be NT. It doesn't mean that either group is more prone to such attitudes.

Autism, while a disability that should receive supports, accommodations, and adaptive skills, should not be eradicated or looked at as wholly negative. I don't want a cure, but I also don't assume that the people who say they want one are bad parents/hate their kids/insert other stereotype.

I believe in diplomacy. This doesn't mean we have to be wishy-washy, roll-over-and-do-what-the-NTs-all-tell-us autistics. We can criticize the foundations of the ideas in favor of cure without resorting to ad hominem attacks on those who support it. Especially this is true since the word "cure" is often used to describe developing adaptive skills (such as speech and toileting), which I do not believe is cure.

While it is still very important that we not concede on helping parents to understand that being nonverbal is not a jail sentence, if the individual is capable and willing, some of these things are useful skills. We should focus more on the WAY the skills are taught, to see that they are not being coerced, that the individual is not made to feel inferior for "autistic behaviors." These, after all, are requisite to human equality, and I have no intention of conceding these goals, which need not be compromised by employing some empathy.

As to the divisions. They are Everywhere.

HFA, LFA, AS? Touch of AS? ND or curebie? Retards and computer geeks. I get pretty sick of it. Especially it annoys me when people use the word 'retard' as an insult. It is to me like using the word 'gay' as an insult. When I was in elementary school, I heard people say, "That is SO GAY - you're so GAY" so much that I preferred the word homosexual. It surprised me much when this summer I got my hands on a copy of The Advocate and some books about the gay rights movement, and I learned that the preferred term in the gay community is just that - gay. Why? Because 'homosexual' was too medicalized a term, one used often when it was a diagnosable disorder voted in by the APA and voted out again in 1973.

Why did I bring this up?

I am not sure at this point if I really forgot my topic or if I was trying to utilise a rhetorical strategy. In any case, the existence of a word alone does not make it offensive or acceptable. In fact, devoid of the usage and origin and other available context, a word has absolutlely no meaning, and is merely a string of the shapes of the letters to form it, and the sounds it would make if one were to produce it.

The problem lies with kids growing up thinking that if someone is gay or retarded, then they are less valuable and worth mocking. Growing up, I frequently got called both. I wonder how many grade-school kids get called "retarded lesbo?"

The fact is, whatever category people try to group me (or anybody else) into, to force-fit like the puzzle piece so many seem to think goes well with autistics into the narrow configuration so many would like to see me fit, I just can't, and I won't. Even though on the surface I resemble the math-and-science-obsessed Aspie stereotype, and that aspect of it is true, it is impossible to put someone in so narrow a box without losing a few chunks of the individual.

I tend to relate more to nonverbal auties who use a speech device than to the highly verbal aspie who has trouble with social skills. My social skills are actually pretty good; though eye contact and body language for me are atypical (in the case of eye contact, virtually nonexistent), and these are not instruments I use to augment my social understanding. Fortunately, the high school I attend is generally accepting of different people, so the fact that I spend 90%+ of my time at school rocking and moving my hands and occasionally getting up to pace, or those days in tae kwon do that I just can't speak at all, these don't affect friendships adversely for me. At my other school, where I repressed most of these behaviors to the best of my ability out of fear, I had the understanding of a select few, the sympathy of a few more onlookers who recognized injustice - most of whom did nothing to support my efforts, however.

So as we recognize that these labels are often used as dividing lines and demeaning labels, that we are not so simplistic as to fit them - no one is - we must also consider that not everybody is being a big NT meanie who wants to take away our rights and abort us. True, we cannot be weak and submissive, or we will only be worse than ignored, but being rude will work to this unfavourable end as well.

So please, I urge all budding activists, who seek to impact the posautive change that I have begun my journey to realize, to employ tact wherever it is necessary. Of course someone who outright insults you with an ad hominem attack loses that privilege, but where the individual is not making a direct attack that is meant to villify, then please employ this tact. It is difficult at times, and what helps me is to write my angry, emotional stuff down on a separate file, then post a logical, tactful reply. (Not that I always succeed - I am sure that I have slipped up. My crowning achievement in this area is when in response to a YouTube video in which a parent referred to the autism "epidemic" as a "slaughter" I kept my cool for a 500 word response limit.)

Autistic Self-Advocacy Myths

The following is from a post I made on the Autism Speaks forums. I addressed it to the parents of autistic kids who have only seen neurodiversity and autistic self-advocates as being against helping their kids, to demonstrate the realities of what it means to be against cure, to show that we're not just some highly successful math geniuses who think autism is just a difference rather than both a difference and a disability. Don't think it was very effective, though, considering nobody has replied besides me (only 36 views, too).

I hate to see the polarization between autistic self-advocates who are against cure and the people of autism speaks and cure autism now. Because the truth is that we are all out to help improve the lot of autistics, and it's a shame to see people so easily become divided.

It happens when an aspie writes cocky that they are superior to NTs. It happens when accepting autism becomes dirty words with implication that we are to ignore people's difficulties that are due to disability and pretend that they don't struggle.

These, of course, are the more extreme of the both sides, and they do not represent the true motivations behind the causes - which, as stated already, are for the bright futures of autistics who are all too often left in the dust.

The truth is, accepting autism doesn't mean letting kids bang their heads and pretend that autism is a wonderful, positive thing that everyone should want. It means looking at the various limitations and disability and helping the person to adapt to the world and, where reasonable to adapt the world to autism. Most people I have read on this board seem to already fit this description of loving their kids as they are and wanting to help them get along, except that they also express the desire for a cure.

Autistic anti-cure self-advocates support helping people to talk, or if that doesn't work, to help them to communicate by typing or signing or such. And of course to also try to help with self-help skills (I myself am 17 and can't brush my own hair that is about shoulder-length by myself. I have, however, learned toileting skills and how to wash myself).

So I identify as autistic (Diagnosed Asperger's age 10). However, I am not so reactionary that, just because I am adamantly against cure for autism that I would deem anybody who supports it to be some "conformist NT" or some such nonsense. I want to write on behalf of autistic self-advocates who, like me, reject these extreme views. (The extreme people tend to be far more proliferate (is this a word? I tend to use words that I have no idea what they mean) and so are more noticeable.

I understand that there are many people whose needs for supports and services far outweigh mine. I speak, have the self-help skills I mention, and such things. In fact, I for a long time, while completely against curing Asperger's/HFA, wholly supported curing LFA autistics. It wasn't until this summer that I reevaluated my views and realized that I had been misguided.

Through the Internet, I got to converse with and read from autistic people who are considdered classically low-functioning Kanner's type autism. People who were, variously, mentally retarded, or nonverbal, or lacked in many "basic" self-help skills. Usually fit more than one of these descriptors. And they are against cure, too.

I am only asking that you reevaluate your views of autistic self-advocates and the goal of a cure. I will not try to use scare or sympathy tactics to try to sway you. Of course autism isn't easy. And even though I am what would be called high-functioning, I don't feel any advantages or special gifts that I attribute to autism. My heightened senses, they lead me to sensory overload. It is a foreign concept to me what it is to derive pleasure from this sensitivity.

So I don't feel I have any "autistic gifts" and most certainly not savant abilities. In any case, it is my whole point that people of all opinions and backgrounds and experiences need to tone it down, consider the perspective of the other side, and to look at things a little less narrowly.

After all, some of the deficits of autism (theory of mind, perspective-taking, self-absorption) are also as commonly universal in NTs, except that the deficits are expressed differently and to different degrees (such as, a NT who would pass the Sally-Anne test but doesn't understand why her sister could possibly prefer strawberry over chocolate, or the autistic who fails miserably the Sally-Anne test but considers the differing views and experiences of a cyber-audience - such as me).

I want to add that the last example gives impression that it is meant to categorize NTs as unviersally having the skill of passing the test while not considering other people's different perspectives or autistics as universally being unable to pass the test but being able to see other people's point of view. I was just trying to show how it is dangerous to oversimplify the categories and in doing this did the same. I have known online and in person many NTs and autistics who are the opposite of the example, which was intended to be a randomly selected (apparent) contradiction of the definition of the skills and deficits that NTs and autistics are presumed to have. To show that it is not so cut-and-dried as professionals sometimes make it seem.