I modified this from recipes I found online. It’s one of those things that doesn’t actually require cooking, it just requires dumping everything in a blender. And it’s way easier on my system (particularly whichever spot my gallbladder used to be) than the full-fat variety (that often even has cream in it in addition to yogurt):

1 cup of water
3 to 4 cups of low-fat or non-fat plain yogurt (I have had trouble measuring it, but it’s somewhere in there)
1/3 cup of sugar
1/2 teaspoon of salt
1 teaspoon of rosewater
However much fruit you want (I’ve been adding a half a peach or a whole peach, but it can be any kind of fruit and any amount that tastes good)

Stick it all in blender. Blend it until everything’s blended in smoothly and it’s frothy on top. Then pour it out and drink it. (I got the fruit idea because I’ve had mango lassi, but there aren’t any mangoes around at the moment, so I figured any fruit would work.)

Today is Blogging for Women Who Support Us Day, and I really haven’t forgotten, I’ve just had stomach trouble from antibiotics, so it’s hard to focus on writing a new entry.

I will dedicate a post to a woman who supported me and who had a great positive impact on my life and the direction I took. Please join me by also writing a post for the strong women – past and present – in your lives.

I’ve been fortunate to know a lot of strong women. I’ve described a few in my life before, so here are some I haven’t described as much.

Relatives first, I guess.

My great-grandmother, who I wish I’d known better than I did (and yes, I did know her), traveled to America by herself while she was still a child. She raised seven children (several of them would have been classified as disabled by today’s standards, although I’m sure the family would be shocked to know that, and one of the probably-autistic ones ended up being her caregiver in old age) during the Depression. I have trouble seeing her as anything but a strong woman, and I regret that she died before I had the chance to know her better (I was 11 or 12 at the time).

My mother was often quite explicit about certain kinds of gender biases. I remember a boy coming by and playing with the toys, and saying an ambulance driver had to be a man. She’d ask him, “Why does it have to be a man?” She asked those kinds of questions all the time.

Non-relatives:

One of my staff in California, Debra Kahrs, introduced herself by saying she believed women could do anything men could do, and she believed strongly in equality for women. She’d worked in non-standard jobs for women, like construction, and taken a lot of flak from the guys. She had been in the psych system as a teenager, and understood what it meant to be under the control of staff. She lost her job at least once for taking a client’s side in things and teaching a client self-advocacy by example. She tried to go by what was right, rather than what was policy, at a fair amount of cost to herself. She also came with me to Autreat and co-presented on institutions with me.

Cal Montgomery is a disability rights activist who has had a fair amount of influence in my life, both personally and intellectually. She’s been a friend, and she’s also been someone to bounce ideas off of and see what she thinks, or to see new ideas from. She’s been there for me at times when almost nobody else was, when I was depressed or having flashbacks. I can say that most of my thinking as an adult has been influenced by her (in a good way) one way or another.

It’s hard to write about human beings with that much influence in my life, in short little paragraphs like that, but it’s what I can do at the moment.

Someone wanted to find webpages/blogs/etc by autistic men, not just women. (And I’ll admit the online autism world is overrun with autistic women.) So here are some, feel free to post more:

Some blogs:

Aspie Dad
Autistic Minds
Freak Power
Homo Autistic
Ian Johnson’s Neurodiversity Blog
in regione caecorum rex est luscus (the blog of the one-eyed autistic king)
NTs Are Weird
Just This Guy
Pre Rain Man Autism
A Gadfly’s Gadfly
Tony’s Down Under Blog
Torley’s Second Life and Techno Music Blog
Weblogue de Joffrey

Some websites:

This Way of Life (Joel Smith)
Ralph Smith
My Classic Life as an Artist (Larry Bissonette)
Autistic Spectrum (Lars Perner)
Articles by Eugene Marcus
Bradley Olson — A Person With Autism
Brian’s World
David Miedzianik
Kevin Phillips Asperger Site
The Autism Picture Page (Lindsay Weekes)
Inside My Head: A Page on Asperger’s Syndrome (I don’t know if the person in question is male or female)
Richard Wawro (art)
Roger Meyer

Apparently someone’s uncovered the “shocking” fact that as a teenager, I was (mis)diagnosed with schizophrenia. (They could’ve saved their time and read it on my blog, where I’ve mentioned it, but anyway.)

They might be unaware that this took place after an initial diagnosis of autism elsewhere, and that pretty much their sole evidence for the “schizophrenia” was that I was trying to convince myself I wasn’t human and had a fantasy world that I tried really hard to act out in my head as if it was real. (A pretty common thing for autistic girls to do as teenagers, according to Tony Attwood, and a really good way to end up with a diagnosis of psychosis in an autistic person.) They might also be unaware that the diagnosis also stated that I had been “psychotic” since very early childhood, and only “became schizophrenic” (i.e. started trying to convince myself I wasn’t human) more recently. How do you tell if a very young child is “psychotic”? It can’t be hallucinations or delusions, because those would be either invisible or indistinguishable from normal make-believe play. It would have to be the so-called “negative symptoms” — i.e. the things that are identical in appearance to autism. My parents, in fact, attempted to tell them that I’d been considered autistic because of these things, and they were told this was “childhood schizophrenia”.

They might also be unaware that this was the facility that told my parents that they, specifically my mother, had caused me to become “psychotic” and then “schizophrenic” as a result of a poor parenting style. And that also forced me to “admit to” hearing voices I didn’t actually hear, and was shut down because nobody would send their kids there anymore, especially after a guy died there. So anyone who supports the rulings of a facility like this one is supporting the refrigerator mother hypothesis of autism, and the few throwbacks in the mid-nineties who still believed that sort of thing in America (yes, it wasn’t entirely dead by then). And supports a psychiatrist who has been successfully sued for malpractice before.

When I was later sent to special education, I was sent there as someone who’d had a number of diagnoses, and autism and schizophrenia were both listed among several others. Because I had been trained, by a guy who among other things believed in involuntary trance induction as part of his “Ericksonian psychotherapy technique” (also apparently believed in beatings, etc), to “admit” to all sorts of experiences and beliefs I did not have, and I was now terrified to go against him (he had told me he would go into my head, kill the person I was, and replace me with someone else, and that I would die if I disobeyed him — and I’m the one who was supposedly out of touch with reality, hmm), it was generally accepted that he was right about me, and I was encouraged to write about myself that way. (This is called an iatrogenic problem, by the way, and the patient is not generally considered at fault for it.) Heavily trained echolalia, by the way, is no substitute for communicative speech, as became obvious when I had life-threatening medical problems while under this guy’s “care” and I didn’t say anything about them. (This doctor also trained another person he diagnosed as schizophrenic, to recite obscene phrases about Jesus and the Virgin Mary. He found this amusing.)

However, when I got old enough, I asked to go off all of my medications. Amazingly, something strange occurred: I did not hallucinate (except during seizures, which were subsequently treated, and abuse flashbacks, which are pretty discrete events). I did not hold any particularly bizarre beliefs. After a period of withdrawal symptoms, I gained abilities, rather than (as threatened) losing them. My psychiatrist (who’d known me since pre-schizophrenia-dx days, and who I was only transferred away from — to the place where they diagnosed schizophrenia — for insurance reasons) decided there had been some misdiagnoses along the line, and we worked out together what they were. I gained more and more ability to tell people what had been happening in my head the whole time, rather than either not being able to say anything, or only being able to say what I’d been taught/forced/encouraged to say, or (in one intermediate stage) being able to say part of what I meant but having it come out wrong… and I took (and take) that ability very seriously.

It should also be noted that the developmental services systems in both states I have been in, have had to have proof that I was developmentally disabled. If they did not have that proof, they would not have accepted me as a client (I know a guy who can’t get services through the California system, despite having four different developmental disability labels, because his psych label is said to take precedence, so this is not something they would have accepted without documentation that prior to the age of 18 I already had a diagnosis, which I had from the age of 14). Both are fully aware of my past diagnoses, so much so that they’re mentioned in one of my individual program plans. So is the Social Security Administration. Last time I was given an SSI re-evaluation, I saw a psychiatrist there, who gave me a bunch of tests (including tests that autistic people tend to do really well on and non-autistic people don’t — and that I excelled at), asked me a few questions, and told me that he’d read my records and found it very sad that I’d been misdiagnosed in the middle of things there.

I also at one point wrote to one of the doctors at that treatment center and asked him what exactly they’d thought about the state of my communication at the time I knew him. I’d finally received documentation about what had actually happened to me, including gradual decreases in useful speech and voluntary movement throughout adolescence (which happens to some autistic people, including some with prior speech, and which were in fact the reason for an initial referral to a neurologist when I was 12 or 13). As in, there were official papers written on it, and such. (And I have now met people with Asperger diagnoses who can’t speak as adults because of things like this.) I wanted to know what on earth he had thought those things were (my previous doctor had coded them under “central nervous system disorder, not otherwise specified”, prior to knowing this research about this happening to some autistic people). He told me he had assumed they were due to “command hallucinations”. Nope, but that’s the level of thoroughness with which he checked his assumptions in general.

If I both believed that the word “schizophrenia” actually referred to anything (and after a lot of study, I don’t think it does), and believed that it fit me in some way that being autistic didn’t account for (which it doesn’t), I would be proclaiming my “schizophrenic pride” as thoroughly as I proclaim my “autistic pride”. As it is, since I don’t think either of those things, I still take part in some more generic “mad pride” organizations like Mindfreedom International (and I still have a psychiatric label — post-traumatic stress disorder).

I find it very interesting:

I have a sprained finger that is permanently crooked.

When I first showed it to a doctor (after it had already healed wrong), they thought it was a break, so I talked about it and treated it as if it was a break. It’s written up in some of my official records as a break.

They later x-rayed it and found out it was a badly-healed sprain, not a badly-healed break. I only found that out last year.

Suddenly, they no longer refer to it as a break, but they don’t give me any crap about the fact that they (and I) once thought of it and treated it as a break. Nobody else does, either, really. Nor do they question the fact that I don’t bother telling people it used to be thought to be broken. Yet when this happens in the realm of psychiatry, it’s somehow treated quite differently. Fortunately my psychiatrist is totally willing to admit his and others’ prior mistakes as mistakes, and leave it at that.

At any rate, the only particularly strange part of these events in my life is that the autism diagnosis actually predates the schizophrenia diagnosis. And I’d bet that’s happened to others as well (actually, I just realized that it happened to my friend Stan). At any rate, I have a friend who made up the acronym TAFKAS (The Autist Formerly Known as Schizophrenic), to describe this, because it’s such a common phenomenon. (In fact, until the year I was born, autism was not separate from schizophrenia in the DSM at all.) So being labeled “psychotic” is a trait I share with Donna Williams, Wendy Lawson, Larry Bissonnette, Laura Tisoncik, Mary Newport, Edgar Schneider, Georgiana Thomas, Sondra Williams, and many others, both speaking and non-speaking (and everywhere in between) at the time of that diagnosis. (For instance, look at Larry Bissonnette’s diagnostic history, he’s another mostly-non-speaking anti-cure autie with a plethora of diagnostic labels in his past, and who has echolalic speech that doesn’t necessarily reflect what he’s thinking.)

But go ahead and refer to me as crazy, if it makes you feel better. I do align myself with the mad movement as much as with the autistic one, and I’ve had many experiences in common with those described as the various psychiatric elaborations on the word “crazy” (as well as still carrying psychiatric labels beyond autism to this day). It just doesn’t mean I’m not autistic, any more than my finger wasn’t sprained just because people once thought I broke it.

Tom Bombadil was a Tolkien character who appeared pretty close to invincible in the setting the other characters encountered him. But he refused to stray past a certain set of boundaries that nobody knew except him. The evil ring the story was named after had no power over him, but could not be left with him for safekeeping because “…if he were given the ring he would soon forget it, or most likely throw it away. Such things have no hold on his mind.”

Axinar was talking about what he sees as different subtypes of autism, and said:

Of course Ballastexistenz herself has illustrated, at least to me, that this Autism Spectrum may have at least two dimensions.

You see, reading through Ballastexistenz blog it would appear that her cognitive abilities are almost completely unaffected. In some ways, in terms of her ability to observe and process information, she’s in better shape than my dad.

And it dawned on me, one reason that I always have trouble when autistic people are split up into types by this kind of thing: Usually the different typings, presumed to be mutually exclusive, apply to me at different times in my life. So if you ask me to split autistic people up into subtypes, you’re asking me to split myself in half, and to split a number of other people in half as well. Because a lot of these so-called subtypes are not, as far as I can tell, about underlying brain organization, as much as about what the person’s doing with that brain at any particular point in time.

When I was a school-age child (but not before and not after), my thinking often appeared very inflexible and rigid. This was not because my thinking is just naturally that way. This was because the kind of thinking I was trying to use was outside of my natural areas of competence. I managed for a time on sheer brute force, and the strength of that brute force created the apparent rigidity (as well as the moodiness, low frustration tolerance, coming home from school and screaming and crying all night, etc). The kind of thinking I was being expected to use, was the kind that requires stacking blocks on top of blocks and remembering where you put all the blocks in order to avoid knocking them all over. This is not sustainable, eventually they all fall down.

And when they all finally fell down, the rigidity in my thinking was almost gone. I was of course still grasping at those blocks, at random sometimes, producing some fairly scrambled-looking results. But I could not sustain it enough to sustain the kind of rigidity that held them together in the first place.

If I am pushed to engage in that more difficult kind of thinking, even today, I will suddenly appear rigid, black and white, and every other stereotype in the book about autistic thinking, few of which actually apply to me in daily life. It comes from the force of trying to hold foreign ideas together in what amounts to a foreign cognitive language, and watching them all slip away as rapidly as I can put them up. The easiest way to do this to me, is to make me do intellectual work to a deadline. I might get it done, but I become rigid, explosive, self-injurious, and so forth, along the way, and then everything shuts down for a long time afterwards. For those who think that blogging means I could hold a writing job, there’s your answer. When my staff hear I’m writing to a deadline, they give me a wide berth. This is also one reason why I don’t present at conferences more often than I do. You can also get the same reaction out of me by expecting me to perform intellectual tasks in an unfamiliar environment. (Note that for me, “intellectual tasks” start at the level of recognizing the typical identities and functions given to objects,and then work their way up from there.)

But on my own ground, I’m incredibly competent. What people don’t see, is the fact that I rarely stray off that ground. (That ground, by the way, contrary to Axinar’s statement, is far from being unaffected by autism. My way of thinking is in fact a very autistic one. But “autistic” does not mean a certain stereotype.)

About seven years ago, I was given a bunch of extra equipment for my (still) camera — a nice telephoto lens, a flashbulb, and a light meter. It made no sense to me, it was a jumble of chaos, and after a bunch of frustrating sensory explorations of the equipment I put it all in a box and forgot about it.

I opened the box two days ago. I could instantly mount and use every single piece of equipment that baffled me seven years ago.

I can’t even count the amount of books I have poured into my eyeballs without always understanding them. I could read a book and be unable to answer questions about it right afterwards. But given enough time, the information sinks in somewhere, because it’s there when it’s called up some other time.

This is the territory I operate best on, the very non-foreign cognitive territory that allows me to do all the things that seem to impress people overmuch. But it’s also the territory that gets the least respect for what it is. People see me operating well on this territory, and they want, expect, and sometimes demand me to step over into a kind of cognitive territory that, if I did, would result in a short blast of achievement (if anything is achieved at all, which isn’t always) followed by weeks of burnout and shutdown.

They see the extent of my triggered knowledge and expect me to answer questions that don’t trigger that knowledge, they see the gracefulness of my climbing and expect me not to fall on my face while walking, they see how detailed a triggered memory can be and expect me to call up non-triggered memories on command, they see how well I learn when the material is given and then allowed to percolate and expect me to learn well while they forcefully cram information into the parts of my head least equipped to process it.

I was in a room full of people with intellectual disabilities recently. We were all given a form to fill out. Some of them had trouble reading the form, but could answer the questions once they understood them. I could read the form at a glance, but I could not answer the questions (like “Why are you here today?”). Guess which one of us was more confusing to the staff.

Someone replied to my video making it sound as if I have simply not been pressured enough, that if I were pressured enough, I would give up the activities I am good at, and somehow gain all sorts of abilities I’m not so good at. That’s not how it works. I don’t learn through pressure. Excess pressure in fact may have created the burnout of a lot of those things that I wasn’t so good at to begin with, but now can barely use for any length of time at all. The more pressure you put me under, the less I can do, understand, and learn.

I can say, that if I were forced to move into that foreign territory (and if I were even capable of sustaining life there, which I’m not), I would look less intellectually competent, more rigid, more black and white in my assessment of the world, and like I was missing a lot more information about the world. And I would be thus classified into a different “type of autism”, when really all that’s happened to change me from that “rigid-thinking type” into the “type” I am now, is I’ve become much more efficient at staying within my own territory, and much less able to stay within foreign territory.

I suspect much “rigid thinking” among auties (when it’s actually rigid and not just thought to be) is actually an artifact of trying to brute-force thinking with cognitive equipment that isn’t what they’d be most skilled at, rather than a fixed trait of the autistic mind. Sort of a by-product of mental overclocking.

I’ve also noticed, in the changing-over-time department, autistic people who describe thinking like me (as I think now), and then they describe that as a way they used to think. In some cases they view it as something they were glad to discard, in others as something they wish they could get back to but can’t. And now they are way more at home than I am in the kind of thinking I’m not so good at, even though in the past they weren’t. Some so at home that they cannot conceive of understanding something without words, for instance, despite the fact that many of them had a time period when their best understanding of things was largely or entirely wordless. The changes happen in more than one direction.

Meanwhile, I still do best, like Bombadil, in my own territory, even if nobody else knows quite where the boundaries are, and even if the boundaries shift a little every day. But a lot of people who interact with me treat me as if I don’t know what I’m doing, as if they in fact know what’s best for me, and that if I don’t go along with what they’re expecting of me, then I’m either stubbornly refusing to do what is good for me or unaware of what is good for me. The idea that I already have a better idea of what’s good and bad for me than most people, doesn’t cross their mind, nor does the idea that I’m more able to do things overall if they’re done the way I think best, not some other way.

Basically, put the information there, let it come out on its own time. That’s how I best accomplish things — the results are higher-quality, too, than if I’m forced to do it some other way. So even if the way I do (and don’t do) things doesn’t seem to have any rhyme or reason to it, even if you can’t see the boundaries of my abilities, it’d be best to respect that I probably know more about them than you do.

…of course nobody’s ever figured out Tom Bombadil either, despite years of ridiculously complex analysis on lots of people’s parts.

Tom’s own response to being asked who he was: “Don’t you know my name yet? That’s the only answer. Tell me, who are you, alone, yourself, and nameless?”

Heather at Especially Heather wrote:

I know that there are those out there who view her only as a disability. I know that these people exist, Ive met them first hand. I also know that Emma’s voice has just as much meaning as your’s and mine. Its awkward dance has just as much passion and definition. It’s unsteady flow does not negate it’s importance. It breaks my heart when I see people in the medical field refer to children like Emma Grace as “broken”, “retarded”, “Devoid”. It saddens me to think that there are campaigns in place right now that devastate mothers as soon as their child is diagnosed. I was so blessed to have the support system I had when Emma was first diagnosed. There is so much hope in this diagnosis. So much support and love. These children have voices, they have the ability to communicate, they just sometimes do it in ways that seem so trivial and unnatural to us.

All of these children have something to say, hopefully we will all take the time to stop and truly listen.

She did a video of her beautiful daughter here:

Another beautiful kid:

And a video written by a really cool autistic kid:

My favorite lines from the last one:

“My biggest joy in life iterates your insistence that I am not disordered. Other worldly to you, but to me it’s merely my everyday splendor.”

I have long had trouble understanding the idea that people like us are somehow otherworldly, and he puts it pretty succinctly.