And Stimming With Rainbows of Every Design

Disclosure and Being an Autistic Cog-Sci Major

2011-09-28T13:02:00.001-07:00

[[Crossposted from my Tumblr.]]

Well, I’m out as autistic in the group for disabled students at my university.

I wish I could be out everywhere. But I’m in a major that’s happier with us being studied than being the ones doing the studying. I’m at a university with a professor who describes autism as “a cruel disease that afflicts children;” who claims that we “completely withdraw from the world socially;” who asserts that mirror neurons are behind what makes us human while claiming that autism is characterized by a loss of mirror neurons. I know this professor is famous and respected around the world, and only rarely criticized for his rhetoric.

He’s not in my department’s faculty, but he works with someone who is. It’s a small, close-knit department. What would the rest of the faculty think of me if they knew?

I’m not certain.

I’m not asking. I don’t need my fears confirmed. I don’t need my identity torn away from me by people who have spoken to me for five minutes. (Because that’s what being told “You can’t be autistic!” feels like to me. It’s not a compliment. It’s not a relief. It’s “You’ve been lying to everyone you trust for seven years and you never belonged at the one place you felt halfway safe.”)

And if I were believed? I want to go to graduate school. I need research experience. Given what they think of us, how likely would I be to get it?

But if I have to conceal why I’m interested in this field, am I really better off? I don’t want to lie outright, so all anyone gets when they ask me why I’m a cognitive science major are evasive, overly general statements. I can’t answer questions about which particular aspects of the major I’m interested in.

They think we’re not whole people. And because they think that, I can’t be. Not in public, anyway. I’m all facades and plausible-sounding excuses. People tell me I should get more involved in things — that new experiences will bring me out of my shell. And all I can think is that I should get involved — the experience will give me more stories to tell, more fuel for conversations, more ways to talk about what I’m doing so I can escape talking about who I am. It’s how to succeed.

Right now, I don’t want to succeed. I’d rather be. But I don’t know how to do that.

Still Alive (but no promises)

2010-12-18T15:41:00.000-08:00

Because when I make promises of future activity here, none seems to follow. There might be some, there might not.

Anyway, I'm still alive. A lot has happened since I last posted, most of it good, some of it rather less so. I moved to Silicon Valley in summer of '09 and have been attending community college there. I submitted my transfer application to UC San Diego's Cognitive Science program last month, so if nothing goes wrong, I should be there come next fall.

Meanwhile, my body decided this spring that I should join the subset (10-20%?) of people with cystic fibrosis who develop diabetes. I didn't find out until July, didn't get any actual practical advice until November, and didn't start actually taking insulin until yesterday. So now I'm preparing to go to a Christmas concert while my body keeps trying to head towards hypoglycemia.

And I had a two-month relationship with another autistic person which I ended (in part) for reasons that the people who go on about Cassandra Syndrome would likely consider impossible. Or possibly they would just claim that I was "too severe" and that he was "not really autistic."

Read this.

2009-07-26T14:05:00.000-07:00

From Asperger Square 8: Neurotypical Privilege.

I've been thinking for months that something like this needs to exist, did the barest beginnings of typing a list up in late June, but then realized that intersectionality was getting in the way of declaring many things autistic-exclusive. What Bev and several people in the comments have compiled is really what I wanted to get at.

That's not to say that autistics are the only ones who lack many of the privileges listed, but there's a specific way of phrasing things here that's useful and doesn't demand all the parenthetical remarks that I was inserting.

Diagnosis and something that sounds a bit fishy.

2009-06-18T20:59:00.001-07:00

I took the ADOS today. I'm now autistic rather than "Asperger's." I don't feel fundamentally changed.

I'm being told that it's best I start the Regional Center application process tomorrow.

The fishy-sounding thing is this: I'm being told that I need a guardian appointed through the Regional Center in order for anyone to get Power of Attorney if I'm unconscious and unable to make medical decisions for myself. I questioned whether this was really necessary, as non-disabled people are able to sign forms to grant others Power of Attorney. Apparently I can't do this as a disabled person unless I have a guardian? That sounds really bizarre to me, and given what I know of guardianship/conservatorship, I don't want to rush into it. But I'm being told I must do it before eighteen or it will get too difficult.

Does anyone know if the statement I heard on that topic is accurate?

Eep.

2009-06-10T00:09:00.000-07:00

I was on vacation and came back to my Statcounter to find a surge in people coming to my blog. It's less nerve-wracking now than before I determined the cause. I'm also a bit relieved that I never modified those posts. After my mother read those particular entries last fall, she told me it would have been better if I acknowledged that such "intentional communities" are good for some people and that I was only speaking for myself. I couldn't do it. It might have made the post more palatable to some people, but the particular power structures involved are wrong no matter who's concerned.

On another topic entirely, I'm very tired of how phone-focused many doctors are. I've not been able to email my medical doctors or my psychiatrist (I don't even have their email addresses) and it's made certain things very difficult. Speech may be supposed to be more authentic, but when I speak in medical or psychiatric contexts, I tend to end up reciting stored dialogue about how I'm fine when I'm not "fine" at all. There's a psych med I started a few weeks ago that I'd really like to get off of (Lamictal), but the only way I have of contacting my psychiatrist between appointments is by phone (she claims that she gets a better handle on how I'm "really" doing that way), and that's not workable for me at this point in time.

I had to climb out from under the virtual rock I've been hiding under for this!

2009-04-02T23:40:00.001-07:00

Most of the World Autism Awareness Day articles I've read have felt like a slap in the face. I thought that I would take a break this morning by reading skeptic blogs instead of media hype, but I ended up reading about the details of Jenny McCarthy's latest nonsense and where infectious disease outbreaks would be most likely to occur in California. It wasn't exactly the most uplifting experience!

I burrowed under term paper duties for most of the rest of the day (after affixing an "I am not a puzzle" button to my backpack, which will remain there for the rest of the month). Then I searched out the official site. From there I found a link to Obama's statement on World Autism Awareness Day.

I'm stunned, and, for once, it's in a good way.

"We celebrate the contributions of individuals with autism, their families..." We're mentioned first. Not as an afterthought, not forgotten entirely. First, and not as burdens.

There's emphasis on barriers, stereotypes, and discrimination before treatment. That's as it should be. The first three are what hurts, rather than the mere fact of being.

"Self-advocates" in the first paragraph. Not just helpless children. Self-advocates. We have agency. I knew that, but it's been acknowledged publicly as part of an awareness event, by a major public figure (understating here, I know!).

There's mention of treatment and more person-first language than I'd like, but it's still something I never expected that I'd see. And the fact that I am seeing it has me far happier than it should.

Also.

2008-10-10T17:34:00.000-07:00

I'm attending AutCom in Ann Arbor.

If anyone is actually interested in meeting me, the identification information in my post about Autreat is still a pretty good guide to recognizing me. Two things though: my hair is dramatically shorter than it was at Autreat and my stepmother Michelle will also be there. Much of the time, it's likely that I won't be accompanying anyone, as we're going to split up on Saturday to cover as many tracks as possible. (Though if there's a talk that I think is especially important, I might drag one of them to it.)

I'm sorry.

2008-10-10T17:18:00.000-07:00

Anyone who's been witness to all of my online decisions these past couple of days has probably come to the conclusion that I'm panicky and quick to make hasty (and often bad) choices.

I won't say they're wrong, because they're probably not.

Anyway, what happened was that either my mother or my stepfather discovered this blog (and all my others) on Tuesday night, and I panicked. I didn't want them having access to my identity like that, so I re-named some accounts, closed others, opened others, and locked this blog. At the time I intended the lock to be permanent.

It's not now. After three days, I'm much calmer regarding the whole situation. I may be careful about what I write here in the future, but I certainly won't make my archives inaccessible. I don't think I have anything major to fear, at least from reactions to anything written on this particular blog.

2008-08-18T08:05:00.000-07:00

I just spent time at another residential-farm/institution's website reading the rationale for why agricultural life is good for autistics.

There's something I want to establish, for the record.

I am a city person.

Yes, I am autistic. But I am still a city person. The two are not mutually exclusive.

I love the concept of having access to university lectures, concerts, well-stocked libraries, groups of people (yes, autistic doesn't mean asocial), and convenient public transportation. I don't love being surrounded by loud noise and sirens at all hours, but I'd rather find a place not on a main throughway or find a way to handle it with earplugs/noise-cancelling-headphones/anything-else than live on a rural farm.

SAGE Crossing's rationale/justification for concept has no similarity to my experiences, and clashes horribly with my worldview in general (that we should create a culture of inclusion). Theoretically a rural setting might be "safer" for autistic-me. (But is it for someone with my chronic illness? I think me-with-cystic-fibrosis is far better off in a city with nearby medical facilities.)

And there is no way that I'm going to live in a farm just because I flap my hands. People who flap their hands are allowed in cities too, for the record. And if all people who annoyed other people were sent out to the countryside, there would soon be so few people in cities that they would no longer qualify as cities.

Also, what the hell does needing to be anesthetized for routine medical procedures have to do with needing to live on an institution-farm? It seems like SAGE Crossing is just throwing out random stuff about autistics and assuming that people will infer we can't be included in society based on these disconnected, irrelevant things.

The point of intentional communities is that they're intentional.

2008-08-18T00:14:00.001-07:00

Bittersweet Farms is not an intentional community.

The point of intentional communities is that a person *intends* to live there. If they decide they no longer want to, they can leave. They make decisions about their own lives.

If a person is placed into a community by someone with greater power, forced to stay there unless the person with greater power moves them out, and has important decisions about their life made by those people in power, then they're not in an intentional community. They're in an institution.

Yes, even if it is on a farm. Yes, even if they are doing work on said farm.

And no, I will never willingly consider such a living arrangement for myself, even if I think intentional communities have the potential to be really cool, because Bittersweet Farms, and the Sacramento-area farm-institution in the very early planning stages are not intentional communities.

The rantling above was triggered by one of my parental units telling me that she was interested in attending the planning-discussion meeting because before she had met my father, she was considering living in an intentional commmunity. She and my father still want me to attend the meeting, because they think that maybe I could urge them to take autistic perspectives into account in this whole process.

Perhaps I'm just too cynical and jaded, but I'm not sure it's worth bothering. At most I can only realistically imagine an autistic getting a token role in this planning process. There's no way we can get a majority. Even if we did get a sizeable minority, the power structures will still be the same, and they're the most dangerous part of the whole thing.

Googling the name of the person in charge shows that they're a Rescue Angel and that they were somehow involved with the Green Our Vaccines Rally. I know what that means from an autism-science perspective, and I'm not happy with it, but I don't know if it would have any significance from an institution-masquerading-as-pseudo-utopian-community-planning perspective.

Possible Change in Tone Upcoming

2008-07-30T13:07:00.000-07:00

This blog will be turning into a general blog for content-containing posts that will likely be mostly autistic/disability-advocacy related, but that may not all be.

This loosening of internal subject-rule criteria comes about as a result of realizing that strict rules for myself were making it impossible for me to write *anything* here.

Tone change will hopefully come about soon, though my brain is not at peak functionality. I went to Autreat, and just got back from Texas on Sunday, and am leaving next Sunday for a trip to the Virgin Islands. Then I have a week at home, then I'm going to Petaluma the next weekend to go to a Dar Williams concert, and then I start school the Monday after that. It's all very confusing for me, and at the moment, I'd like to cut out the mega-vacation. :-/

Autreat Recognition Stuffs

2008-06-24T10:28:00.000-07:00

Since I saw on my StatCounter account that there were some people visiting from the Bradford dorms, I figured I'd post some identifying information so you can find me if you want. This is rushed, but hopefully won't be *too* garbled.

I'm female and almost-medium height (5'3"), have long brown hair pulled back in a ponytail. I'm wearing jeans and a t-shirt that says "This is a cat. Not a defective dog. It is very happy being a cat. Autism: It's a difference, not a disease." It contains a picture of a brown cat with blue eyes in between the "This is a cat" part and the rest. Later in the week, I'll probably be wearing a shirt with "Autistics: the true voice of autism" printed on it. I'm usually accompanying my father, Alan. One person thought he was my older brother, so don't think it's not me if the person with me looks quite young! I'm almost always wearing a brown fanny pack. I sometimes wear a white button-up long sleeve shirt with a blue floral-ish pattern over my t-shirt.

And the first part of my legal name is Katherine. (Not giving away my last name on here, though it's easy enough to find if you know where to look.)

I'm not likely to initiate interactions -- I'm really bad at it, and don't know who's looking for me. But I am here!

2008-05-25T12:51:00.000-07:00

Wow, I'm awful at updating. Whether or not that will change is uncertain.

Also, I'm going to Autreat next month. It shall be interesting to see how that turns out.

A Rule That Shouldn't Be Followed

2008-02-10T23:38:00.000-08:00

I was reading through archives of my old high school's newspaper and came across a statement that a student must be failing their classes in order to be 504 eligible. Disabled and have C's? Too bad, no accommodations for you.

When I went there just last year, my 504 plan wasn't thrown out because my GPA was too high. I was able to get my first 504 in middle school despite having received A's in every class except for Ceramics.

Now as I read the laws, it seems like they're biased against letting students with high GPAs receive accommodations. As long as we look fine on the surface everything is okay. Right?

No. The student who looks fine on the surface might be crashing every day after school. They may be unable to have meaningful conversation for hours after they get home. They may be living with chronic pain as a result of constant overload. They may be near-unable to participate in any non-paper-based academic activity, just getting shuffled along because their reputation is protected by their more academic work. They may be doing all this and still have the veneer of success.

That was my life from grades seven through ten. (Elementary was in a neat, ultra-tiny autie-friendly school). There's no grade eleven. I had to quit.

Even having to quit furthers the illusion of success. I'm a junior college student now, so the reaction is some sort of, "Look at you, look how accomplished, you skipped the last two years of high school, aren't you brilliant!!!"

No. That's not it. I want to throw away the coating of success, make people see the truth. I'm not in junior college because of a personal preference. Despite any illusions to the contrary, the system failed me just about as much as it failed any typical drop out.

If a 504 Plan or an IEP will help a student get what they need to make the educational system accessible without a later crash, then they should get it. It wouldn't have helped me (I had too many communication problems for listed accommodations to work for me, and too many communication problems to state proper accommodations, so I was stuck.), but for those it can help, it should be accessible. It shouldn't matter whether or not the person looks good on paper.

Information on Laws Banning Incandescent Lightbulbs

2008-02-10T12:32:00.001-08:00

Several months ago, there was some buzz in the blogosphere about the possibility of incandescent lights being banned. Ballastexistenz posted about it here. The BBC has since written about how compact fluorescents (the main replacement) can cause migraines, trigger seizures in some, and worsen rashes in people with photosensitive skin diseases.

Since then, legislation has been passed that will eventually ban incandescent lighting.

In the US: current incandescents banned by 2012. It does say that GE is making higher efficiency incandescent bulbs which will be permitted. That's more encouraging than what I've been reading elsewhere.

In Ireland: banned by 2009

In Australia: banned by 2010

Canada: banned by 2012

European Union: trying to phase out sales by 2009

Why I Write Where I Write

2008-01-24T20:07:00.000-08:00

I seem to spend a lot of time offline explaining to family members exactly why I write in the places I write. Apparently me commenting on blogs, in the comments section of random newspaper articles, and on places like Yahoo!Answers is just a waste of my time, and I should be writing more at higher ups in autism organizations, political candidates, and assorted other "influential" people. The "nobodies" on the Internet are not worth my time or somesuch.

Well, the "nobodies" are the ones going on fundraising walks, promoting quack cures, sending their kids to potentially disastrous "therapies," perpetuating dangerous ideological memes, and supporting the higher-ups. They're everywhere, and they communicate, because that's what people do. Some of the things they communicate need to be refuted.

I just read Daniel Quinn's Ishmael this past weekend. (I might write more on that later, I know it articulated a lot of things that I've wanted to have a way to say for years.) Anyway, exploring his website after I read the book, I found this quote from an essay that perfectly articulates what I'm going on about.

Where there are two with changed minds, there can be four. And where there are four, there can be eight. And where there are eight, there can be sixteen. All because of that one that started the whole thing by saying, "I've got to change these two minds."

That's why I write where I write. And I have successfully changed people's minds. I don't know if they spread on what they learn, but I figure there's always the potential. It's definitely better than some piece of writing ending up in the "recycle" folder of some authority's e-mail inbox. Not that people shouldn't contact people in positions of power (and I think that contacting the media can be very important, as newspapers, radio, and television are all major parts of informing the general public), but those of us who mostly hang around below the radar shouldn't be devalued either.

Barriers to Blogging

2008-01-22T21:38:00.000-08:00

I always say I'm going to write more here and then I never do. Bad me. :-P So, no promises on this entry. Maybe I'll even say that I'll write less and then I can prove myself wrong!

First off, I'm just getting back into advocacy after about six months of being mostly dormant. I'm hanging out reading things, commenting at Yahoo!Answers (yes, it's a disaster, but at least it's a disaster I'm familiar with), occasionally commenting on a news story if I think I need to. But I'm still feeling very out of the loop on things and I expect I will for a while yet.

I spend a lot of time intending to write. I think of a topic that piques my interest, and I plan that when I have time, I'll blog on that topic.

But when I actually go off to write on that pre-determined topic, I freeze up. The best way I can describe it is that when I first think of the topic, the word pathways open up and I can follow them down and make a coherent post. Of course, I'm either not at the computer then or I'm trying to get something else done, so that doesn't happen. Then five or more hours later when I'm finally attempting to write it up, I'm on a whole other island and maybe there are other paths and maybe there aren't, but regardless, I'd have to do a lot of leaping across impossible gaps to get to the island with the first path. After a few days, I *might* reach it again (certain islands are frequented more often than others), but there's no guarantee.

Add to that that I have some sort of anxiety disorder that makes dealing with comments stressful and exhausting. I think I'm among the few people that actually hope for spam, because at least I don't have to worry about the spammers flaming me! Whatever the issue is is completely unpredictable -- I can be just fine one night and have severe flares the next morning. All that is predictable is that it will come back. One or two days down the road, I *will* regret making whatever post I made. No exceptions thus far.

I have some sort of problem too with topics, where I have a very strong memory for what others have written, and am afraid of writing about topics that have already been covered. It's a bit irrational -- I don't mind reading about the same topics multiple times at all, and no one can come up with all new material or is expected to, but it's still a barrier that's there. I think that now that I'm aware of this barrier I can work through it.

I'm a full-time student too (taking almost all online classes, which doesn't cut down on the overload factor completely, but helps a lot), which could present barriers at some point, but hasn't yet. This may only be because the other barriers are taking up all the space at the front, but I'll mention it regardless.

So there goes my non-eloquent excuse list. There may or may not be real posts to come in the days ahead.

On Katie Jones, not being "allowed to die," and the supposed "disruptiveness" of diversity

2007-12-30T11:48:00.000-08:00

I wrote this last night and already posted it elsewhere, just decided that I should probably put it over here too. So if you know me on LJ or IJ, there's nothing new here.

I'm reading the Chicago Tribune article about Katie Jones, who has cerebral palsy and goes to school with a DNR sticking out of the pouch on her wheelchair. The situation with the DNR is absolutely disgusting to me, as the whole "better off dead than disabled" attitude was when I first heard of it. Katie enjoys going to school. It says so in the article. Her life is not all pain and suffering and misery. If it were, my immediate response would be to ask what's wrong and how to solve it without resorting to letting her die. But apparently Katie's interests aren't really considered in this whole thing.

Anyway, a lot of the remarks in the comments infuriate me just from a personal perspective.

It's "heartbreaking" when "a body is trying to die and no one will let it?" Define "trying to die." Define not being allowed to die.

Hardly a day goes by that I don't consider the fact that I would be dead if I were in a different world where aspects of medical progress hadn't occurred. Without understanding of supplemental pancreatic enzymes, respiratory therapy, or antibiotics to treat certain infections that people without CF don't tend to pick up as often, I'd be dead. The same goes for people with all kinds of disabilities. The specific technology required might be different from what I presently need, but that doesn't make it intrinsically more horrid.

There are people with cystic fibrosis who need supplemental oxygen or who use respirators. Some of us require feeding tubes in order to get enough nutrition. If I required any of that in order to survive, I'd gladly take it. I'd much rather take advantage of medical tech than die. To be truthful, the only thing that scares me about it is that the fact that someone needs the respiratory stuff is a pretty good indicator that their chances of survival are way lower than they should be.

With regards to the, "OMG she's disabled, she coughs, she's different, she shouldn't be going to school bcuz OMG disruption!!!11one" thing one person mentioned, should students with Spanish as their first language be prohibited from going to school? After all, English speaking students might find their accent distracting. Should we ban openly gay students from attending school? Hey, I know, let's repeal the Brown vs. Board decision! That would be sure to cut down on the distractions caused by that dreaded diversity problem. < /sarcasm> (Sadly, in the area I live right now, I would be surprised if someone didn't reply with "Yes to all three, segregation for the win!" The region of California I live in is terrible in that regard.)

I can think of so many MORE disruptive non-disabled students. Most of the people who created a disruptive learning environment in my classes were extroverted jocks who found it far more exciting to play games and harass people during class than to participate in their work. People like me exist, and we're told we shouldn't go to school. People like my former classmates are intentional asshats, and they're celebrated by their classmates (and, if they know how to suck up to them, which most do, their teachers).

No, students shouldn't be forced to be helpers. Helper/helpee built "friendships" have serious problems. (Hell-bent on Helping). But, if the student needs one, she should have an aide. Three of the three special education one-on-one aides I met were crappy, so that may not necessarily be a good thing. But there still should be an aide to help with basic tasks and somewhere out there, there are useful, non-ableist assistants. I'm certain I've seen people writing about them before. Not that they aren't rare, but they do exist in somewhere-that-isn't-fantasyland.

So yes, it is possible for disabled students to go to school without the non-disabled students being forced to be "helpers" and having the quality of their education decline.

Back on the main topic of the article, it seriously sucks thinking (either correctly or incorrectly) that people believe you would be better off dead and would be willing to see that belief fulfilled. I went until age nine or ten hearing about euthanasia and assisted suicide and never catching on that they were illegal. When my doctors at the CF clinic had something serious they wanted to talk about, they were afraid I wouldn't be able to handle hearing the truth, so they sent me away somewhere else while they talked to my parents. I thought they were discussing whether the quality of my life was low enough for them to kill me "for my own good." I had recurring nightmares about going to the UC Davis Med Center, being tied to the wall, while doctors and nurses pointed guns at me, telling me that my quality of life was so low that they couldn't allow me to live. I can easily imagine the terror that can come from the situation Katie is in. But if I had known to research, I would have found out that I wasn't in danger. With this case it's *real,* which of course makes it infinitely more terrible.

I hate this world some days.

I ATE'NT DEAD

2007-11-29T21:38:00.000-08:00

Wow, I've gone way too long without posting here.

I have *not* abandoned this blog. I hope to start posting again shortly, hopefully within the next week, maybe tomorrow.

Meme!

2007-07-15T21:50:00.000-07:00

I've been meaning to write here more, but haven't gotten around to it recently. Anyway, Ballastexistenz tagged me, so I might as well do this.

The rules:
1. Let others know who tagged you.
2. Players start with 8 random facts about themselves.
3. Those who are tagged should post these rules and their 8 random facts.
4. Players should tag 8 other people and notify them they have been tagged.

1. My main internal (never communicated to anyone else) perseverations consist of creating (and replaying) stories mixing two (or more) fictional universes, formed from my natural ability to quickly detect parallels between things. The scenarios, characters, and universes I'm mixing change over time, but the pattern has stayed the same for about eight years.

2. I only learned to get a sound out of my kaval by sitting in a vibrating respiratory therapy vest that forced me to exhale when relaxed, and moving the kaval against my lips in varying angles until I could get a sound, then unconsciously compiling the patterns so I could utilize them without using the vest.

3. I'm awful at reacting at the right speed for me to do *anything* in most team sports (mostly large ball, many player team sports -- I'm actually great at badminton), but when it comes to snorkelling through very rough water, with sharp rocks surrounding me and waves throwing me from side to side, I can navigate near-effortlessly. I'm not entirely sure what allows me to do this.

4. I trill my tongue enough in real-life, (in the manner in which many trill to call cats) that I have friends who often greet me by trilling.

5. When I was a kid, I would automatically harmonize with the group whenever I sang. That is, I would always sing at a constant interval above or below everyone else. I was never aware I was doing it, and never able to find any references to doing similar online. I had lots of people tell me that it was 'amazing' or 'remarkable,' but it actually stopped me from being allowed to sing much in groups. I still do it now, if I allow myself to sing out, but I have more control than in the past.

6. On many computers, I can tell from the variation in high-pitched tones emitted whether a slow-loading website will or will not eventually load.

7. I get immense joy out of thinking about and visualizing sets and subsets, and subsets of subsets, and the overlap between different subsets. Layered conceptual stuff in general makes me happy.

8. I went through eleven years of my life with a name that was physically painful for me to hear or read (Katy), then discovered synaesthesia and realized that most people's names didn't hurt them. I go by "Kate" now in real life, but that's still slightly painful. The only variation of my full name that isn't unpleasant for me in some way is Katerina, which brings images of a blizzard against a deep, dark blue night sky.

I can't think of any more people who haven't been tagged already, so I tag the first eight people who read this and haven't done the meme already.

No, I am not a teaching tool.

2007-06-20T16:35:00.000-07:00

This graphic is my response to the idea that autistics can be used as teaching tools for non-autistics curious about autism. I've heard enough about how I should educate everyone I meet that I've gotten annoyed by now. I'm not an encyclopedia, not a how-to guide, and not a textbook. I'm not a translation guide either. (Image made with the free program DrawPlus.)

Click to enlarge. Clicking again in Firefox gives me the best result in terms of clarity.

(In case anyone can't see the image, it's a book called The Ultimate Guide to Autism and subtitled "Autism encyclopedia, dictionary, and how-to from the inside!" On the upper left-hand corner is text saying "With rave reviews!" There is a blue-and-white wave thingy below the subtitle, and then below the wave the bottom half of two legs with feet. The whole image is surrounded by a circle with an "x" across it.)

This is what I'm supposed to be? I don't mind educating, and think it best that actual autistics do the educating about autism, but that doesn't mean I want to be turned into a teaching tool and a teaching tool only.

I'm tempted to maybe modify this a bit sometime (it would need to be enlarged at least), and turn it into a t-shirt with text on the back that says something like, "I am not your autism textbook."

But they're all so nice!

2007-06-19T11:37:00.000-07:00

This rant has been long forthcoming. It is the result of a buildup of things I’ve seen said over the years, combined with what looks more like the reality behind what people say.

So many places I go online I run into people discussing how developmentally disabled people (oftentimes just those described as “mentally retarded,” but also often all of us) are always sweet, gentle, kind, pure of spirit, angelic, innocent, harboring no “bad” thoughts or emotions whatsoever. They say that it’s intrinsic to who we are.

It never made sense to me that the result on one test designed to measure “intelligence” (and no, I don’t trust IQ testing to begin with) would have anything to do with those traits that I described above. When I think of this idea, I think of an imaginary tube of a certain volume that some people claim must be real. “Kindness” and “intelligence” are supposed to fill it. A lack of one must be compensated by the other, and an excess of one must be compensated for by a lack of the other. Just ignore that it makes no sense.

Part of what contributes to this assumption about us I think is that many people have no clue how to read us, and come up with these things to try to put a positive spin on the way we are, because they can’t find anything else positive about our existence, or perhaps cannot find anything to say about us even "really being in there." I’ve seen the argument about how angelic we are used as justification for not hating us, like hating us is to be expected and accepting us is some awful thing.

The rest, I’m afraid, actually may have something to do with the external appearance of a lot of developmentally disabled people. I’ve seen the assumption made most about special education students. I wonder how many people bother to wonder about whether this really is intrinsic, whether it's not actually a result of how we’re raised and taught to act.

According to a lot of the people in control over our lives, we are supposed to be passive, compliant, good, and show no negative emotion about anyone. We are told that this is the only way anyone will like us, the only way we can be and still expect anyone to be willing to be near us. We spend our lives learning to suppress things natural to us and unharmful to others to avoid the negative consequences of doing those things. We learn that simply asking for information is viewed as a sign of an “attitude problem.” We learn to apologize for anything and everything others do not approve of, regardless of whether whatever we were doing was in fact negative. We are taught that any expression of anger is punishable.

In special education PE (which, by the way, is where I saw most of the stuff from the above paragraph), I met a student whose entire life had been reduced to acting “nice” (read that “nice” as passive) so she would earn smiley-faces, and who spent a lot of time resorting to telling her aide that she’d be nice in the future, regardless of what she had done to warrant reprimanding before, regardless of whether it even deserved reprimanding. As far as I could tell, that was viewed as some sort of accomplishment.

If someone has a one-on-one aide (and I didn't, something I'm now thankful for), at least if that aide's purpose is to enforce "good behavior," the student will get away with a lot less than a student without an aide. There is no room to break the minor rules that most can break every day, because someone is always, or almost always, watching. It is not unlikely that everything they do is already pathologized. They’ll be followed by someone with training in how to subdue them, how to enforce compliance. And yes, the eventual result is often someone who looks nice on the outside. But that’s not a good thing! To assume it is requires ignoring the context we live in and have been raised in.

I can’t say exactly why others force us to be this way. I think part of it is a nasty self-perpetuating cycle, where people expect us to be passive based on stereotypes, and then, when we aren’t, force us to be.

Another part of it, I think, comes from the notion of “mental age,” and from the idea of developmentally disabled people as perpetual children. It’s more acceptable to treat us like small children up into adolescence and often adulthood than it is our non-disabled agemates. Plus, the ideas that many possess of all small children being sweet, cute, innocent, and angelic, or otherwise needing to be made that way echo the way we’re perceived.

Regardless, I'm not perfectly sweet or angelic! At this point, I think that means I've been lucky.

Finally figured out my problem with most autism discussion groups

2007-06-12T20:51:00.000-07:00

I'm afraid I'll get flamed into oblivion for writing this post, but oh well.

I think I have *finally* figured out what it is about most online autism communities, even those populated by actual autistics, that drives me away.

I've never been able to enjoy the forums at Aspies for Freedom and WrongPlanet. I have been able to partially attribute it to the chaos of the message board format, to the self-hatred of some members, and to claims on some members' part that some types of autistics, though not their type, need to be cured.

When I wandered back into a few two or three days ago, I realized that there's another attitude in those groups that really freaks me out. (Disclaimer: I do not mean that all members have this attitude, I'm just referring to an overall viewpoint that I've seen.) It's a sort of medicalization, in terms of fitting one's existence, or another's into medical categories, but medicalization doesn't even seem like quite the right word.

It seems almost more like some sort of "Autism Expert" worship, combined with word worship. (Note that this doesn't include all "experts" though. Most specifically it excludes anti-vax fanatics, and those who claim that ABA is the only way to "treat" us. The group that is most commonly used seems to instead be those who theorize about our internal state and social "problems.") If some "Autism Expert" comes up with a theory about our "social deficits" or "cognitive deficits," a bunch of people will spend time trying to cram little bits of who they are into the wording that the professional used. It's like there's an idea that if there's a word for it, it's right.

I see discussion of whether fictional characters are "high-functioning," "low-functioning," or in the middle, and arguments over this, with very little criticism of even the concept of functioning labels being accurate. I saw similar with people arguing over whether my favorite fictional character is Kanner or Asperger type autistic, but didn't see anyone arguing that there really is no difference. (I would have charged into that one, but it seemed too late.) I see people discussing how something demonstrates their lack of Theory of Mind, or their lack of empathy. I see very little criticism of these concepts, even if they aren't necessarily accurate.

I saw one post (and I'm really afraid someone will come and flame me for pointing out a specific) that said that Temple Grandin said that we couldn't have complex emotions. There was nothing implying that she could be wrong, it just seemed to be something like, "Grandin says it and Grandin is God." In my opinion, she's not infallible, and she's not perfect, and, as one autistic, she isn't able to describe what every single autistic can and cannot do. Her ideas about "low-functioning" autistics also infuriate me, but that's a message for another time. (I will say that I don't dislike Grandin completely - I met her at a book talk in Sacramento, and she seemed nice enough.)

In contrast to these groups, and these posters, the autistic people I get along with best, like me, are willing to question professionals' assumptions about us and what goes on in our heads. They don't try to twist everything into some sort of deficit that someone with a Ph.D. and experience with (though not necessarily understanding of) autistics came up with. The same goes for the groups I've been in, but since every group with a certain number of people attracts people with this viewpoint occasionally, I have times where I have to take a break. Despite my occasional complaints about it, the Asperger community on LiveJournal has been the best thus far, and is neat in that there are always people around who will correct the myths of "lack of empathy."

With regards to the other groups though, I just have never gotten along with people who are not willing to question ideas. I'm realizing that a lot of these people don't primarily perseverate on autism, and may have gotten a lot of information from stereotypes and newspaper articles. Problem is that I perseverate on autism, and am also unwilling to trust so-called professionals just because others consider them experts, so I'm bound to conflict with a bunch of people on the boards, or just to get so frightened by their lack of doubt that I run away before posting.

Somehow, I doubt that this is what the developers intended...

2007-05-30T19:32:00.001-07:00

I just noticed when I updated all of my Firefox extensions yesterday that I have one I hadn't noticed before - ~~SnarkNotes~~ Fleck. Some of you might find it useful, for the purposes I've been using it for, or not.

It's an (IMO) nifty extension, designed to allow ~~angry autistics~~ people to ~~safely make sarcastic remarks in response to curebies' writing~~ annotate websites and blog entries, and allows users to put comments in the area of the page that they actually want to remark on.

Of course, I'm not strictly (or at all, yet) using it for its intended purpose. I'm currently finding it a really neat tool for doing the thing I struck out in the paragraph above. And yes, I *am* internally calling it SnarkNotes, despite the images of a study guide series directed at sarcastic high school students that that conjures for me.

Granted, this doesn't mean I *won't* use it the "right" way - I expect I will if I have something to say but can't get my thoughts in order for a comment. It's just that now, when I've been restricting myself from replying to a lot of questions about autism online due to the fear that I'll just become unnecessarily sarcastic, I finally have an outlet that helps me not end up openly insulting people!

BTW, I do the same to my assigned novels for class, write sarcastic/snarky remarks in the margins/between lines of text. (Sometimes I think I might have more of that than actual informational notes.) That's why I'm afraid to let others see my books. I'm already worried that some might claim that the stranger stories I've written in Spanish are indicative of a deep morbidness and desire for violence. :-P (My instructor hasn't yet, but that was *last* semester, before the paranoia about students' writings became even more pronounced.) I'm trying not to arouse suspicion among my classmates and teachers, as I really am quite harmless.

"No, the book is wrong. This whole conclusion is fallacious."

2007-05-24T20:32:00.001-07:00

Some of you have probably seen this post already, but I'm posting this over here as well. It at least gives me something to put here for now. I should be able to update more frequently once I get out of school and have some time to rest and relax, plus don't have to spend all day in an overloading environment.

Anyway, the title quote comes from young River Tam in the Firefly episode "Safe." It refers, in the context of this post, to the wildly inaccurate conclusions about me based on writing and assumptions about people like me, or people that seem vaguely like me on the surface, but aren't really (i.e. non-autistic intelligent people.)

It seems like there's some conclusion that most if not all of my family members have made, that I'm just moving on to junior college and leaving high school because I'm bored. That's a gross oversimplification, and a highly inaccurate one at that. The real reasons are varied, and have been nearly impossible for me to articulate thus far, but it seems possible that I might at least be able to get them out in text, especially if the audience is comprised of those who already know a bit about autism and the ways our skill sets contrast with those of NTs.

Basically, it seems like the public school system is designed for one type of people, who fit statistical norms, as well as the preconceived notions of what skill sets people have. Most students do manage to fit these assumptions, and possess the right skill patterns to succeed. There are others who do, but don't succeed by the standard notion of success because of external situations (e.g. poverty, illness in their family, abuse, bullying for reasons unrelated to disability, to name the ones I can currently think of.) Then there are those who just present with an entirely different type of skill scatter, that is completely at odds with the typical 6-7 hours, 5 days a week, in a conventional classroom type of environment. (I've probably left a few other groups out, as I doubt it's clearly divided into three populations.)

My guess is that a large percentage of the people in the third group are autistic (most others are probably non-NT, but not autistic either), and that the vast majority of autistics, if not all autistics are in the third group. Conventional schooling requires being able to sustain a certain auditory and visual processing style that I can't hold for more than three hours at a time on a good day. It also puts enormous strain on us socially, plus encourages us to pretend to be something we're not, and focuses too much on authority for a group of people who tend to lack the social hierarchies of NTs.

I'm intelligent, and bored with the pacing in some of my classes that I'm strongest with (Spanish, Math, some aspects of English go slowly), but the challenge of holding the level of processing that I need to learn in class actually makes me fall slightly behind the other students comprehension-wise, and far behind my optimal learning and memorization speed. I know from experience that when I'm in an autie-friendly environment (like my private elementary school was for the most part), I greatly surpass most of my NT peers academically. I was bored in elementary school because I could actually *learn.* Now it seems like all others' interpretations of my current dissatisfaction and depression are based on that previous experience.

I've received very high grades in the past four years (since I've been in schools where we receive grades), and looked, on the surface, like a decent student. Internally, I've been coming closer and closer to crashing for almost four years now, and think I may have finally done so just a few weeks ago. I've been trying and failing to come back to a satisfactory level since then. I don't force-fit easily. It doesn't work, and has never worked to try to simultaneously squash and stretch different aspects of who I am in an attempt to make me succeed in an environment designed for standard issue neurotypicals.

Now the deceptive appearance of the surface is falling away, and I'm realizing that there's no way I'll ever be able to manage two more years in this environment. My father has been getting upset with me because I've been too overloaded to do my homework. I'm too exhausted to make sense of a lot of the at-home reading assignments for my English class, so I have a "B" in English due to not doing well on the tests, and have recently had several arguments culminating in meltdowns with my father, who, a few weeks ago, didn't think I was doing well enough or trying hard enough. I think we've reconciled, and that he understands better now, but it was highly stressful at the time, and still is to a degree.

I'm not a nice, convenient, easy-to-serve NT, and won't succeed in education designed for the masses. I know that college won't be designed for autistics, but it will, at the very least, give me a chance to take fewer classes, and have more space between classes to recharge enough for information and words to make some degree of sense, plus let me focus in on classes that fit within the areas of my perseverations.

Very little of this has to do with being bored. I know the big assumption is that the majority of my dissatisfaction comes from being highly intelligent and in a public school, because that's what the books and pamphlets about "gifted" kids say (and my parents do regard me as gifted in certain ways, despite me never having taken a standard IQ test). I just wish there were more literature about the problems with autistics and the public school system, not based on the idea that we're defective, but rather on the idea that there are major flaws in the system designed to educate us (and that goes even for special education, which from what I've seen, seems to be more focused on compliance and behavior programs than real learning.)

I'm currently in a cognitive state that I shouldn't be functioning at. I'm doing well enough to write this, but it's taking more effort than it does when I spend my days in an environment that is compatible with how I function. I've for the most part felt very depressed in the past few weeks, feeling like a burden for not fitting this system, even knowing that the educational system was designed with people very different from me in mind. I keep trying to convince myself that it's just laziness, that I wouldn't feel these emotions if I tried harder, that I could succeed if I were just a little bit better at working. But I know it's not, and I know I need to get out as soon as possible.

I *am* looking forward to seeing how I can function once I get out, and hoping to have the energy I had five years ago, when things were far better. I'm also hoping that in a few months I won't have near constant fatigue combined with exhaustion- and overload-related neurological pain. I don't care if JC is still easy like so many people around my parents say, I'll get to take some classes online, and definitely won't have to spend 7 hours every day in class.

The post I've been trying to avoid making

2007-04-23T15:50:00.000-07:00

I had been trying to avoid writing about the VA Tech killings if at all possible, but I'm going to anyway, or at least write about some of the responses I've seen. Right now they just keep circling through my head, and I want to get them out. I want to say beforehand that I am in no way excusing the actions of school shooters.

I know some information came out in the past few days that Cho may have been diagnosed autistic, although I don't know if anyone's certain whether the translation was correct. Since then, I've heard people say that if Cho had received ABA therapy, none of this would have happened. I've seen the massacre turned into anti-vaccination propaganda. I've seen someone say that this is what happens when an autistic "goes off his meds," like if we're not drugged we're automatically homicidal. The last was from the one-on-one aide of an autistic spectrum student at my school.

Okay, so on top of the bullying autistic kids already receive at school, we should add on even more invalidation at home? Right, because that doesn't go against anything we've learned about the circumstances that make a school shooter.

Treating autistics like defective NTs isn't the way to prevent things like this. Almost no autistics are naturally violent. When we are, it's generally a reaction to an autistic-unfriendly situation, that might not be as visible to the NTs surrounding us, but nevertheless is still present. We're certainly responsible for no more violence than NTs, especially because there are more of them. Neurotypicals are responsible for almost all gang violence, but I don't see people going around talking about the importance of using behavioral therapy to "cure" NTs.

Here are some examples of invalidation. Aside from physical bullying, the statements on this page are some of the things that bullies tell us in school. Uncomprehending teachers and adults say the same things. The most widely accepted therapy for autistics, ABA, does the same. It orders us to look like someone we aren't, denies the validity of our perceptions, tells us how we "should" feel and act. Therapists and professionals say things about us right in front of us that they'd never otherwise say within earshot of the person in question.

I've been reading through "How to Create a School Shooter" at The Republic of T. I found this statement from Woodham, the person responsible for the shootings at Pearl High School in 1997.

"I am not insane, I am angry. I killed because people like me are mistreated every day. I did this to show society, push us and we will push back. ... All throughout my life, I was ridiculed, always beaten, always hated.

Behavioral therapy of the sort that is most common today shouldn't be promoted as necessary for autistics in order to prevent school shootings. ABA is invalidating, it shows hatred for who a person naturally is, is often successful in teaching autistics to hate themselves. We're ridiculed and beaten down in the name of therapy, in cases where restraints and aversives are still used, literally. If this was Woodham's motive, how is applied behavioral analysis supposed to help us? How will neurotypicals' attempts at teaching us how to feel empathy by means of constant invalidation prevent us from doing the same as Woodham or Cho?

I'll just touch briefly on drugging, only to say it isn't required. The statement that we need to be medicated because of who we are naturally is just as invalidating, says just as much that who we are is defective. Medication might be helpful for dealing with anxiety and depression, but it doesn't have to and shouldn't be prescribed for autism in and of itself.

I know of autistics who were raised to accept who they are, and weren't forced through today's most popular therapies, weren't drugged every second of their waking life. I see them as some of the least likely people to kill even one person, let alone massacre thirty. So just stop using the tragedy at Virginia Tech as a means to claim your therapy is urgently necessary. It's not. What we need most is to be accepted as whole, healthy autistics, and not as broken neurotypicals.

Autism Prerequisites

2007-04-18T22:09:00.001-07:00

I've been perseverating on autism for four years now, and over that time, have read a lot from people with any type of connection to the autistic spectrum, from being on it to being the grandmother of an autistic, or just having heard about autism from an online friend. I've seen an equally wide variety of ideas about cure. Unfortunately, it seems like autistics aren't allowed to be as varied, or at least not be different from other autistics and still be regarded as autistic.

There’s something I’ve seen, especially among the pro-cure crowd, though it’s just as possible for people who have only heard about us from the accounts of NTs, or have had very limited exposure to autistics and autistic experience. It’s almost like in order to be considered a “real” autistic, and not one of those “fake online autistics,” I have to meet 20 prerequisites. The deadline has already passed for 15 of them, and I’ve only managed to meet five. I’ll be suspect that if I meet the remaining five, just because I already knew about autism, and clearly must have put in an effort to meet those five simply so I could become more convincing.

The items on this checklist are arbitrary and take into no account the context I grew up in during the time before the deadline. They vary based on the experiences of the person who makes the internal checklist (though many items, such as specific therapies and time of diagnosis factor into most of these people's checklists), and these checklists may contradict each other. My date of birth might be taken into account when evaluating me, but then it will be used as reasoning for why I especially should have met the person's criteria. The same will go for my location. Any exceptions beyond that aren’t even considered. Clearly, if I was born after 1990, and in a wealthy area of California known for its high rates of autism diagnosis, I must have had the same limited set of experiences that their kid had. If not, I must be faking.

I’m one of many (most?) autistics who doesn’t neatly meet these prerequisites. Real life is a lot more complicated than two facts. I didn’t receive the same therapy as the kids of these people because of factors far more important than my age and location, and the lack of receiving this therapy doesn't mean that I was all that different from their kids. In my case, it was obvious that I was autistic or otherwise developmentally delayed from the time I was 18 months old (maybe earlier, I'm not certain), and suddenly lost public speech. I still spoke a little at home, but not much. I regained speech several months later, but at least until I was five or so, from preschool and daycare records, I can guess that almost all of it was echolalia. (I have lots of papers where a teacher had told me to tell them a story about “that fish,” and my response consists of “That fish. I love my mommy and daddy.”) I certainly had people attempting to persuade my parents to get me evaluated when I was a toddler, and probably would have easily been accepted into speech therapy, or an ABA program if I had ever been taken to be officially diagnosed with autism. I was kept in preschool until I was six in the hope that I would magically become normal, socially and language-usage-wise, and kept in classes with younger students throughout early elementary, because they were thought to be closer to my developmental level.

However, I never was diagnosed even then, and never sent to a professional. To a lot of people I may have been visibly autistic, but to my family, I was “visibly like Mom and Dad, and even more visibly like Grandpa.” That idea just got reinforced when, at 3, I became very perseverative on factual stuff about dinosaurs and pandas, and echoed books about them. My parents would talk with pride about how I went around speaking a memorized National Geographic caption about the Woolong Preserve, and they just decided that I was even more like my mother's father, who had come to be a very well-known geologist in his specific focus area, mainly as a result of a perseverative interest. I had hypersensitive hearing and vision, but that didn't seem that odd for my family.

I also have a medical disability, and no siblings, so a lot of stuff that would have far better been explained by autism was just attributed to those two factors, regardless of how much sense it made.

I happened to go to what was close to the perfect preschool and elementary school for me, which focused on accepting the kid's developmental path, and not on forcing standards by a calendar. It was designed as a school that was supposed to be good for kids in general, and just happened to be very autistic developmentally friendly, without pressure on my parents to make efforts to normalize me, and without pressure on the part of the teachers to look NT. I ended up becoming a lot more able to function as I am than I probably would have otherwise, even (or rather, especially!) if I had been given conventional therapies.

All of this stuff in my early childhood resulted in my skipping a bunch of "autism prerequisites", that, while it might be permissible for me to have skipped if it were possible to see that I had "festered," (even if I could write online about how my parents had let me fester) aren't so permissible if I've become adept at writing, and have learned to happily function as me, and say online that I can do so.

There are, in my opinion, experiences that I have had which are just as important if not more so, in proving to a person that they are indeed on the autistic spectrum. For me, it was the two real friends I had in elementary school, who, in retrospect, were both obviously autistic. I remember how effortless communication was with them, and I remember how difficult it was with all of my other peers at the time. I also remember being literal enough at age six to think that writing in the English language was outlawed by copyright law ("No part of this book may be used or reproduced in any manner whatsoever without written permission." Words are parts of books, albeit miniscule parts, so I thought that I couldn't reproduce any word I had found in a book with a copyright notice.)

Those are just two of the many things that I can look back on today, and say, "Hey, that wasn't officially noted, but it was real, and looking back, I can see what it said about me." They're also the kind of things that, despite their significance, do end up ignored, precisely because they're small and unofficial. I often have periods of anxiety, where due to not meeting the more common checklists, I become afraid that I'm just pretending to be autistic, and those are the things that I grab onto. I keep a file (or not quite, but that's the closest verbal approximation for it) in my memory stored for experiences like the ones I just described, precisely for those times, and have a file in my computer with scanned in images from my early childhood affirming that I am autistic. This is also the main reason I keep my scribed stories that my preschool teachers gave my parents.

I'm not trying to say that I'm exactly like every other autistic kid in existence, or even like 25% of autistic kids. I'm not trying to claim that I am just like some curebie's son. I'm not. It's just that I'm tired of reading that it's impossible to be autistic if one doesn't fit a bunch of individually constructed criteria based on another person's stereotypes and limited experiences, and tired of hearing that based on my not having had these experiences, I can't have anything in common with any autistic kid. I don't like hearing that autistic advocates can't have anything valid to say based on not getting to check these boxes on their list of Autistic Life Experiences for various reasons, that, even if they almost certainly aren't my own, are no less valid.

This shouldn't be amazing, it should be normal!

2007-04-13T18:33:00.000-07:00

I do intend to write in this blog, it's just that I got occupied with other stuff, then the internal drafts and templates for the posts that I had planned became inaccessible over time. So, here's an attempt at a new post. I've been having segments of it appear in my brain at various times, so hopefully I should be able to work off of those to finish it. Anyway, I don't know how to post topics to ease readers in, so posting will probably be about whatever is accessible for me to write on at a given time.

I think I managed to find a decent psychologist. One of the things that's scaring me about this experience is just how happy and wondrous the experience of finding a psych who had actually read writing by autistics, who doesn't believe that we lack empathy and humor, and who doesn't seem to view being autistic as being of less value, or needing to be repaired is making me.

I'm imagining a neurotypical wandering into a psychiatrist or psychologist's office (for the purpose of this section, the psych professional isn't NT, and medicalizes neurotypicality), trying to deal with anxiety and depression. I'll call her Renae, and she's thirteen years of age, so most of the control over her psychological "treatment" goes to her parents. She's evaluated during five forty-five minute sessions. The diagnostician uses both the DSM and the DSN to diagnose Renae with Neurotypic Disorder and Mood Disorder NOS. Renae is trying to figure out how to deal with anxiety first and foremost, but first receives specific instructions on her diagnosis of neurotypicality. [Note: the following is not at all intended to claim that autistics generally try to force NTs into becoming autistic or that being an NT raised in an autistic family is necessarily negative. This is essentially a flip of my experiences with a psychologist/cognitive behavior therapist to show how bizarre it should seem.]

One of the only informational sources the psychologist permits her to view is the Institute for the Study of Neurotypicality's website. Stuff on the Society of Americans with Neurotypic Disorder's website (just ignore that the group only includes one token neurotypical for every other chapter) is also acceptable, as are some other autistic-written pages about Neurotypic Disorder. long as she has a parent to watch what it is. Anything written by other neurotypicals is off limits, since they are either more or less severe (though the psychologist can't imagine anyone less severe according to her narrow ideas of functioning) and nothing they say applies to Renae's specific case. Only professional non-NT researchers know about how this person should live and function. It's dangerous for the person to read anything written by other neurotypicals, and if they do, it's absolutely necessary that they read it with supervision by a non-NT so they can be informed what, if anything, pertains to their experience. Chat rooms are maybe permissible, but it's especially important that supervision is given in that case. It's highly important that Renae understands that she is a very high functioning neurotypical, even though only her aptitude at science and math is being used to determine this (and even though mathematical talent isn't necessary to be autistic and doesn't necessarily indicate that a person is autistic), and that what low-functioning neurotypicals say doesn't validate her experience.

Renae ignores this, and keeps reading the websites and books she has been reading, because none of this outsiders' perspective stuff makes sense. She's grown up mostly around family members, and most of her family members are autistic. The writing that she's been reading is easy to find, and makes so much more sense than what she's always heard and read before. She figures that she can just try to ignore what the psychologist is saying, but keep visiting to help her recover from the anxiety she's developed over time.

However, the most visible NT behaviors get in the way of the cognitive behavioral therapy that the psychologist wants to try out on her. Before any real progress can be made, it's absolutely necessary that she learns to stop making the natural eye contact that she has made with the NT friends she's managed to find. She needs to learn to re-modulate her voice, and to constantly evaluate the angle of her body in relation to the therapist, so as not to appear hostile. This constant self-monitoring leads to crashing during "therapy" sessions, and on a *good* day, she can go through a session without bursting into tears. She becomes more depressed than ever before, and can't understand how this is supposed to help alleviate, and not contribute to anxiety. In fact, they never get to any of the anxiety stuff, because everything is focused on learning autistic social skills and learning to act autistic at all times. When she tells a parent, she's told that therapy has to hurt to help. Finally, she convinces the parent that she wants to leave, but the psych informs her that a relapse of her depression will lead to a decrease in volume of a certain part of her brain, and therefore continuing this therapy is imperative. Luckily, the parent is disorganized enough to forget to make an appointment, and eventually, it doesn't even seem worth returning. This progression is ordinary for patients with Neurotypic Disorder at this clinic, though most are persuaded to stay, and never actually get to the very final step.

This should seem wrong and bizarre. However, a flip of this is essentially what I experienced during the short time I visited a psychologist. In my case, it was NAMI articles that I was supposed to be restricted to reading (ASA was sometimes okay too, IIRC, though I had to remember that I was "high-functioning"), though I disobeyed that instruction. (I had self-dx'ed autistic two years before through reading Moggy's archives at her old MovableType blog, and had been anti-cure since I had discovered that I was autistic. I got through that year of "therapy" by reading articles at the autistics.org library and blogs of anti-cure autistics over and over again.) I didn't include the stuff with the psychiatrist trying to convince me to take Risperdal to "improve social connectedness." It was my grades and grades alone that were used to describe me as "very high functioning" despite not being nearly so high-functioning in other areas. I didn't believe in functioning labels anyway.

I'm posting this now because, though I stopped seeing a CB therapist like the one I mentioned in this article, her husband is still my psychiatrist, and still does medication management for me. Appointments with him manage to make me only slightly less depressed than appointments with her did. However, I think I managed to find a good psychologist in my area recently, who's read autism-positive books and given them good reviews, and who may even be willing to help me deal with my psychiatrist, or to recommend a decent psych for managing my psych meds. (Neurontin is the only thing I'm on right now.) Among other things, she doesn't believe the all-too-common myth that we lack empathy or a sense of humor.

Over the past few days, I've been thinking about my initial elation at discovering this person, and realizing how unnecessary it should be. Ideally, what I experienced would be considered as bizarre as the situation I created earlier. Currently, however, one would be described as right, and as an excellent therapy technique, and one would be described as very wrong. They're both equally wrong, it's just that right now, one type of person (neurotypical) is more valued in society, so trying to change them in such extreme ways would be regarded as highly inhumane and immoral. That's how it should be with autistics as well.

What I wrote of is mild. It's nothing compared to autistic kids receiving 40 hours a week of ABA therapy, and it seems very insignificant compared to what a lot of other autistics have been through. I often think that initially self-dx'ed autistics are lucky because they have the chance to find out what I discovered first and are then better able to notice the prejudices of others and determine that those people are wrong.

The prevalence of more extreme ways of treating autistics doesn't make the stuff like the example I gave any more acceptable, it just means that we have even more to try to change. I want the world to become autistic friendly, and I wish it were possible to just create a cure for prejudice, but failing that, I hope that one day, preferably soon, autistics will be able to receive help for anxiety, depression, and PTSD resulting from abuse by prejudiced NTs without the people supposed to be providing the assistance furthering the problem. Right now, it seems like the safest thing is discussing stuff with peers online, and not every autistic has access to that, or is confident enough socially to try to meet people online. (It took me almost 2 years to actually interact with people on the web and start posting myself, before that was just a lot of reading and learning.)

Intro

2007-03-15T20:59:00.000-07:00

Hi, I'm Danechi, at least on this account, and I'm autistic. I'm also horrible at writing intros without turning them into 1000+ word disasters, so I'll just fill in stuff as I go with this blog. I'll try to be more consistent with my posting than I have been in previous blogs, but I'll have to see what happens when I clear out the line up of post topics that have been accumulating in my brain and need to come up with new things to blog on.