Category Archives: Regression

“It’s on purpose. Really.”

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I came up with this post yesterday, but was not feeling great so I couldn’t do the new-word-generation required to turn it into a blog post.

I’m working on a video that deals in part with what disabled children often think about what’s in their futures. While I’m not likely to include much of what I’m about to write in this video — it’s a bit tangential — some of the stuff I was coming up with for the video reminded me of it.

In The Me in the Mirror, Connie Panzarino talks about growing up with spinal muscular atrophy. She was told things in physical therapy like “You can move your legs, you just won’t.” She has a long memory — back into babyhood — and describes her life starting at a very young age. And, among other things, she became convinced that she could walk and just didn’t want to enough. She thought of herself as different from other physically disabled children she knew, because she believed that she, unlike them, had this secret that she really could walk and one day would once she decided to.

It’s important to note, about her and about what I’m about to describe about myself, that in a less ableist society, disabled people would not be likely to end up thinking this way, any more than most people (other than kids who’ve watched too much Superman, and adults who’ve read too much New Age garbage) think they could fly if they really tried. It’s not “only natural” to believe these things, it’s a product of growing up in a society that really doesn’t take people like you into account, in a big way. What I am about to describe is not pretty, is not desirable, and was not fair to the disabled people around me. But I was a kid, kids think things like that in societies like this one. I’m writing this — and a lot of other things — because no kid should have to grow up thinking what I did.

Anyway, I can remember the time period when my abilities started shifting around. When I say shifted around, I mean like someone came into my head and rearranged everything while I was asleep. I can’t remember if it was gradual or sudden. I don’t know how much of it was truly the loss of certain abilities, and how much was the loss of appearance of certain abilities that had been only tenuous and illusory to begin with. I do know I gained other abilities during that time period, that I’d never shown any remote talent in before. I also know I gained awareness of certain things I did, and could not do, at that time, awareness that I did not have before. And I know that some things really did vanish. Basically there was a giant shuffle taking place in my head, beyond the usual shuffling of puberty.

At some point, I convinced myself that unlike other people, who could not help being like me, I was different. I was better. (Told you this wasn’t very nice or fair to others.) I was only being like me because I was choosing to be an individual. Others like me were only being like me because they couldn’t help it. I tried to distance myself as far as possible, including from people who were in reality far more capable than I was at a lot of things. I, unlike them, could cease to do certain things, or start doing others, any time I wanted. I just… never seemed to “want” to.

This was backed up by, among other things, shutdown. I would experience a longing for shutdown when I was overloaded, and there it would come. This must mean that I controlled it and could will myself not to. Even though I couldn’t. It did not cross my mind that having an extreme longing for shutdown is kind of like an extreme longing for sleep: It’s a biological need expressing itself as a “want”, and if you manage to put it off for any length of time, biology will take over.

While this gave me a false sense of control, it also meant that I felt guilty a lot, and as if I was a horribly selfish person (in ways other than I was actually being selfish — such as by adopting this belief system, which is truly very self-absorbed). Who but a horribly selfish person would choose to flop on their back and wave their hands and objects in front of their face while other people around them “needed” them to be doing something different? Who but a horribly selfish person would delay an entire group of people by freezing in place while overloaded, and force everyone around them to try to figure out what was wrong? Who but a horribly selfish person would lose control of their body in all the myriad ways that I did all day every day, forcing other people to deal with the consequences?

Because I did. There were a number of things that were simply too painful to think about before I realized I didn’t actually cause them.

The time that being fed a combination of chocolate and espresso beans meant that I ran around wildly and then shut down in both movement and comprehension so far that I was sent to a neurologist in the aftermath.

The amount of time I spent staring at nothing, doing nothing.

The fact that school and language were both incomprehensible far more often than not.

The fact that I acted like, and felt like, I did not understand things, only to understand them far later (“must have understood all along”).

The fact that I spent most of my time either doing repetitive movements, not moving at all, absorbed in the sensory experience of various objects, or thinking about one topic and only one topic.

The fact that I spent a lot of the time not thinking in the usual sense of the word. (These days, I’d consider it thinking, but it’s not what people are taught thinking is.)

The fact that I couldn’t get my mouth to say much, if anything, that was in my head, and often couldn’t even get the thing to move at all.

The fact that I spent much of the time babbling nonsense unrelated to my thoughts when I could get anything out.

The fact that there was only a tiny amount of stimulation I could tolerate before everything went haywire.

The fact that I was in excruciating physical pain all the time and frequently reacted to it.

The fact that I did things like flop on the floor, run away screaming, make certain kinds of motions, and hide inside and under things, spin around in circles a lot, that nobody around me was doing.

All of these things and more troubled me greatly, not least because I thought I must be doing all of them on purpose, behind my own back, subconsciously, or something.

This, by the way, is why it’s a really good idea to discuss, and discuss often and accurately, being autistic, with your kids, even if you think they are too young to understand. They will come up with far worse explanations than anything you could possibly say to them.

Anyway, I believed that I could stop these things any time I wanted to. I believed this all the way into institutions (at least part of the time), despite the evidence that I could not. I decided that I must really want to be in them if I acted in the ways that got me put in them. I decided I was the most twisted, selfish, and bizarre person on the planet. Nobody knew this about me, I came up with it on my own, although plenty of people reinforced it along the way without knowing it. It was my worst secret and I dreaded the day that I would be capable of telling it and put on the spot. Everyone around me who acted just like me couldn’t help it, but, I was convinced, I could, and that made me both better and worse than them.

It became worse after a doctor harnessed my echolalia and echopraxia to get me to act certain ways that were actually out of conjunction with who I was. I said before that I don’t feel trapped in my body, meaning I don’t feel trapped simply by appearing disabled. By the time that guy got through with me, I definitely felt trapped, because what he had me doing was so far out of sync with anything I was thinking or experiencing, further than anything every had been. When, even in the face of all this, I acted from things like overload and incomprehension that were not going away, when I slammed my fists into my head over and over, when I didn’t understand what was going on, when I still couldn’t communicate, and yet this guy was considering me “much improved”, my mind twisted into more knots than it ever had been.

Nobody should have to believe that they are, consciously or subconsciously, causing themselves to be autistic. I happened to fall into the clutches of a psychotherapist who was a holdover from the old psychodynamic-approach days. This. Did. Not. Help. To put it mildly.

But this kind of bizarre rationalization can only happen in a world where it is made bad to be autistic. It’s not that the truth I wasn’t facing was such an awful truth, it was that this truth was made awful by the way autistic people are viewed and treated. By the fact that I was not being offered any true guidance or assistance that would have helped me. By the fact that there was no roadmap and the only roadmaps I had, told me I would be institutionalized the rest of my life and that this was the only fate possible for people like me (unless we could be miraculously cured).

There is no reason that people should have to believe things like this about themselves (both that some aspect of themselves is horrible, and that they themselves are the ones causing it). But it is disturbingly common that people do.

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Is this really neutral, everyday terminology?

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Let’s say a neurotypical (not just non-autistic, but neurologically typical) child is born. Call her Kate.When Kate is born, she can’t walk, talk, understand what is said to her, or feed herself. Being that this is the case, her parents are well-armed with early intervention and treatment strategies. She gets Breastfeeding Intervention, and later immense, unprecedented progress is made and she graduates to being spoon-fed. She gets Speech Therapy every day in the form of talking to her all the time in a particular specialized way designed to elicit interest, understanding, and speech. Her treatment also includes giving her interesting toys to treat her incredible lack of fine motor skills and to hone her perceptual skills and eye-hand coordination, as well as many other interventions.

These early intervention and treatment strategies are successful, and she eventually begins to walk, talk, and feed herself. But there is a lot she does not know about the world that she lives in. Beginning at the age of four, she is sent to a taxpayer-funded institution for several hours a day of intensive therapy designed to teach her about various aspects of the world. This treatment is wildly successful and in a few years she can read, write, add, subtract, and so forth, and is even capable of comprehending some amount of science and history.

When she is not in the institution, she is doing play therapy and music therapy. Play therapy consists of supervised play with other children who are also in play therapy to get their exercise, learn social skills, and learn more about how to function in the world they live in. She is dropped off once a week for one-on-one music therapy in which she is painstakingly taught the rudiments of the piano. She is, of course, highly limited in her ability to play the piano, but it is thought that this will be beneficial to her emotional and intellectual well-being. Sometimes she also goes to a day program called Girl Scouts with lots of other girls her age.

To teach her responsibility and daily living skills, there is an intervention at home called the Chores Method. Her parents delegate certain simple instrumental activities of daily living to her, such as washing the dishes, vacuuming the carpet, and cleaning her room. If she does not do these things, then a privilege such as watching television or going out to play with her friends is taken away from her.

When Kate is seven years old, the doctor discovers that she is lactose intolerant, a relatively common condition. This explains her crankiness and the regression and stomachache she experiences whenever she drinks milk. When this is treated, her behavior improves both at school and at home. Her parents view this treatment just the same as they view all the other treatments they have been through to get their daughter where she is today.

As Kate grows older, the treatments and interventions are changed to reflect her age and increased progress and maturity. As she reaches the transition to adulthood, she is given pre-vocational training and encouraged to think about what kind of job placement she might want.

She is also encouraged to choose between one of several residential placements. She ends up electing to move to a group home with two other adults who share the same apartment and support each other with paying the bills and daily living tasks. They receive extensive assistance at home from plumbers, electricians, and repair people who are all trained to do what is outside of these individuals’ capacity. Farmers grow, raise, harvest, and slaughter the food that the poor limited souls cannot grow for themselves, and truckers take that food to special facilities called Grocery Stores staffed by even more people. While they have undoubtedly made extensive progress since they were born, it clearly takes a lot of support just for these young women to get through their days and they are highly dependent on other people for their survival.

I am describing, of course, the life of a non-disabled middle-class American kid from birth to early adulthood.

Several people have told me that terms like ‘treatment’, ‘therapy’, ‘intervention’, and ‘symptoms’ are neutral terms when describing their autistic children’s traits and education. Or that these words are justified (for all aspects of their children’s lives, mind you) on the basis that their children have something on the order of lactose intolerance (which, when it happens to non-disabled people, never-gets called a ‘co-morbidity’ either).  Or that these words are basically no big deal.  If so, I would really like to know if they describe their non-disabled children in anything approaching this manner, or if they would appreciate being seriously described in most of these ways for every aspect of their own lives. Because I’ve rarely seen anyone do it.

The roadmap that didn’t exist in the first place.

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When your child is born, you don’t have any idea what she’s going to grow up to be like. Sure, if you’re fanatically controlling enough, you might have some idea of what you want to force her to be like (I knew kids whose parents insisted they would be doctors, that’s the sort of thing I mean) but you don’t really know. You don’t know what her strengths or weaknesses are going to be. And that’s, basically, okay. Most parents are fine with finding that out, they know the approximate time schedule on which they’re likely to find out, and so forth.

When the child is autistic, that somehow changes. What does not change is that parents don’t know who their child is going to be. What does change is that they often suddenly think they know, and they think they know early, what their child will and will not be able to do. Being from an ableist society (and therefore almost undoubtedly displaying more than a little of this ableism themselves), they proceed to freak out, equating inability to do certain things with inability to live a happy enough or worthwhile enough life.

But back to those assumptions on what children will and will not be able to do.

First off, the uncertainty of what even an ordinary child will and will not be able to do, is rarely acknowledged as fully as it should be. Children do not come with specifications saying what they’ll be good at. They also don’t come with warranties or guarantees as to the fact that they will always be as good at things as they are now. They could get hit over the head, contract a disease, lose a limb, and so forth, and suddenly be unable to do things that most people can do (or most people can do at some point in their lives, at any rate). This is rarely acknowledged, though, and when it is, it’s seen as really too unpleasant to think about. Disability is so thoroughly equated with something unspeakably bad in life that most people don’t like to think about the fact that nearly everyone on the planet will be disabled at some point, including their own children.

But back to autistic children, for whom the opposite mis-estimate of our abilities is common. Not only can’t people tell what their autistic children might be able to do in the future, it’s been my observation that most people are unable to tell what their autistic child can do right now. And minus the roadmap of a schedule, a lot of people get disoriented and imagine something that they think would be the worst.

So then they get freaked out and start plugging away at trying to shove as many skills into their autistic child as possible, thinking this might cause the autistic child to somehow beat what they see as the odds, and live what they see as a better life. (All of this is on a very individual level, since our society views disability as an individual thing rather than being the product of an interaction of certain individuals with a heavily biased society.)

I think I must be a fairly prototypical example of why that approach doesn’t work very well.

I have had a lot of people try to shove a lot of skills into me for a lot of reasons. What they got, was short-term performance, if anything. After an hour, a day, a week, a year, or even several years, this performance inevitably broke down. It was the equivalent of running marathons on a daily basis, it simply could not be sustained even by someone who was used to it.

I at times very much wanted to earn the rewards (this includes the rewards offered to non-disabled children as well as the less standard ones offered to disabled children in return for certain behavior) but simply could no longer force my brain to do something that it couldn’t really do or understand in the first place. Many of the things I was doing were things I had little to no understanding of, I just knew bad things happened if you didn’t do them, and good things happened if you did. And most of the things I was doing were ill-suited to my brain and totally unsustainable.

Of course, when an autistic person can no longer sustain the unsustainable, this gets called regression, a term that itself exemplifies the “forward forward forward must always be moving forward and we damn sure know which way forward is” mentality that many non-autistic people get into around autistic people.

But, in all this, hold on a minute.

There was a lot of information I processed on my own, a lot of stuff I learned without knowing I was learning it, a lot of background information that was getting stored and people in all their effort to foreground all the wrong ways of doing and learning things, were trampling all over my ability to access.

Most of this stuff has come to light in adulthood, and I don’t think it’s totally a coincidence that a lot of this has come along with avoiding “skills training programs” (and anything resembling them, including school) and having plenty of exposure to other autistic people in natural (non-institutional) settings.

The things I have become able to do in adulthood are extremely varied. I have more understanding of my environment, including my body. I have more ability to do various things, including things that I was horrible at as a child. I have things like lasting friendships that I never really had before. And, as I pointed out, I can blow my nose now.

I learn on a different wavelength than most people. You put the information into me, you let it sit there in the back of my head somewhere, and it eventually sorts itself out. This takes time. Sometimes it takes a lot of time. Sometimes everyone is very impatient and wants to take shortcuts.

Have you ever tried to take a route that looks shorter, but ended up with so many obstacles in the way that you had to turn around and take another route that in the end took twice as long as your original route would have to take? That’s what these shortcuts people try to impose are like. They may look good to some people in the short run, but in the long run, they are the very long way around. You can succeed in pushing someone to do something well beyond their capacity, but eventually they’re going to crack under the strain and you’re going to have to work with their actual (rather than imagined) capacities.

I can see why the way so many autistic people do learn is not very popular. There’s no quick results. There’s no snazzy teaching style with a cool-sounding name or acronym. There’s no money to be made in this. There’s no nifty theories backed up by bizarre notions about our development having got off-track at some point and needing to be pushed back on track. And there’s not even an illusory guarantee of normalcy at the end. In short, there’s nothing in this learning style for money-makers to capitalize upon or parents to feel like they’re doing something doing something doing something doing something doing something “for their child”.

Plus, it’s slow. You won’t have your imagined timetable for development, we may even learn things in a totally different order than you expect (my brother was even seen at a developmental disabilities clinic for “going through the stages of development in the wrong order”). You have a child who’s quite possibly going to be learning, in adulthood, things that non-autistic babies know when they’re born, and you’re not going to be able to speed up that process.

But it’s also notable that we do often learn these things in adulthood, provided we’re not prevented from doing so. (Self-fulfilling prophecies can be really interesting things.) And provided we do these things at our own rate.

I’m sure someone’s going to come along and say, “She’s anti-intervention, she’s for doing nothing, etc.” in response to this. I have another post coming about which parts of that are and are not true.

Whether or not we acquire certain skills does not determine our happiness. Otherwise I would be much more unhappy about who I am, and some people I know who fit a much more “functional” stereotype would be much more happy about who they are.

But regardless of whether these skills are tied to happiness, childhood estimates of our skills are not only inaccurate but ridiculously so given the amount of time we spend learning these things in adulthood, and the fact that we are synchronized to a totally different rhythm (of learning and nearly everything else) than the rest of the world. I’m currently going through a period of a lot of things “clicking” that had never “clicked” before (some of which “click” for most people at a very young age), and it’s becoming apparent to me yet again that all the forced-training in the world can’t override my natural learning style, and that common estimates of what we will become like in terms of skills are out of touch with reality.

(I now have a very bad toothache, so I’m going to follow up on this in other posts later after I can think again.)

What not changing us means.

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I’ve recently written this as a reply to two different blogs, so I’m going to try to turn it into a blog entry in itself, modifying it a bit in the process.

It’s not where the desire to change a child comes from, that makes it good or bad. Not on its own. It’s, even more, what you desire to change.

Non-autistic people seem to have better instincts for what to change, and what not to change, in non-autistic children. Not perfect instincts, as is obvious from looking at any parent/child combination you can think of, but certainly good ones.

When confronted with an autistic child, many non-autistic parents, or even autistic parents whose belief system has been formed by a predominantly non-autistic world, have no idea what to do. They have all the good intentions they would have with their non-autistic kids, but they have fewer instincts for how their autistic kids operate. They may not know what growth looks like in an autistic kid. They may know so little about what growth looks like in an autistic kid that they mistake it for something they call regression, and panic.

When autistic people talk about not wanting to be changed, we’re not talking about wanting to remain static and unchanging throughout time. I actually have to strain a fair bit not to consider it deliberate that so many people misinterpret us that way. It’s easier to say “Well of course you want to change people, all people change,” than to look at what we’re actually saying.

When we say we don’t want to change, we’re incorporating all four dimensions in life already. We’re incorporating growth through time into our concept of the thing we don’t want changed. We’re saying “We don’t want to be changed” in the same way that a cat, faced with becoming a dog, would say “I don’t want to be changed.” The cat isn’t denying the important passage from kittenhood to adulthood. The cat is saying I want to grow as a cat, not a dog.

When people say “But all people change,” they’re acting like we’re only talking three dimensions, leaving time out, an impossibility. And quite frequently when they say that they sneak in something about making us into dogs, only they call that part of the growth from kittenhood into adulthood. “Sure, learn about stalking mice and stuff, I’ll give you that, as compromise or something, but hey, wag your tail when you’re happy, not when you’re mad. That’s the right way after all. You can’t deny change. Didn’t I just talk about important skills of the adult dog… er… I mean cat?”

No, I’m not saying autistic people are a different species. But we do have a pattern of growth and learning that has enough distinctive elements that it needs consideration in its own right, the same as being a different species would. It goes deeper than either personality or culture, that’s for certain.

It’s only recently, though, that I’ve been able to figure out that it’s not entirely deliberate that so many non-autistic people can’t imagine us saying “We don’t want to change” without meaning “We want to stagnate.” The entire model for growth is not based on our kind of growth. My own brother used to tell me he was sent for a developmental evaluation because he went through the developmental stages “in the wrong order”. I was later poked and prodded for similar reasons. If they were such truly universal developmental stages, we’d all go through them in the same order. If developmental stages were based on some of my developmental stages, instead of the ones they’re based on now, most of the world would be regarded as severely perceptually regressive. Not that that would be any better, but I do retain skills that are important to my way of functioning but lost by most people in infancy if they ever had them.

Nonetheless, what we need is to be helped to grow in a very autistic way. We need the skills it takes to be autistic in this world, not the skills it takes to be non-autistic. Some of those skills will overlap with the skills non-autistic people need. Some will look the same but be accomplished by very different means. Some of the skills we need, and have, are ones that non-autistic people don’t have, or don’t have very much of, and some of those are essential to our ability to function. Unfortunately, given that we didn’t build the language, a lot of that last kind don’t have words as far as I know. But I’m sure many autistic people know exactly what I mean.

And since non-autistic people generally don’t know about this stuff, and for a whole lot of other reasons, we need exposure to a wide variety of autistic adults, I think. Not as stand-in staff/aides/special ed teachers/etc. While that’s a widespread practice among adult autistics, the training for this, if not careful, or even the setting, can impede the kind of learning that’s necessary in more than one way. But as people we know. A wide variety because all autistic people aren’t the same.

I learned more about myself and how to deal with the world in a few months from an autistic mentor, than I learned spending most of my childhood and adolescence being taken to various counselors and programs and institutions and so forth.

A word of warning about what I mean: the word “mentor” is overused and has been turned into something way more common than it is. It has even been misused in some places as another word for staff. I view any program, no matter who creates it, that claims to produce “mentors” for young autistic people or any other kind of people, as inherently suspect. (I won’t even get into the details of the guy who told me “My mentor’s mentor’s mentor was Aleister Crowley,” suffice to say I don’t mean that either.)

This kind of relationship, I think, cannot be planned or forced. I certainly consider myself lucky to have one such relationship in a lifetime. But she and I clicked and that can’t be forced or mandated. Autistic people who are not compatible in certain ways with each other being forced into that role can be horrid. I’ve been in too many situations where someone was being forced on me or someone incompatible who didn’t know it was trying to force themselves on me in that way, and even with the best of intentions that’s bad. The opportunity for things like that to develop naturally is important, and the opportunity is there more if we’re exposed to a lot of autistic adults.

And our parents also need exposure to a lot of autistic people, in a very non-pathologized way (not just “here’s the story of my life according to the DSM-IV” kind of things), because then our ways of growing won’t seem as disturbing or mysterious to many of them, and maybe they’ll be able to learn to distinguish cat-growth from dog-growth somewhere in the process. ;-)

There is not a lot of formula in this or anything else that I have said is a good idea. That’s for a reason. What is good for autistic people doesn’t follow a strict formula that can readily be explained. That last sentence can be, and often is, taken to mean “anything goes,” but that is not true either. A lot of things are bad for autistic people, and a lot of things are just not particularly good for autistic people. But what is good for us doesn’t fit a formula, and isn’t just an eclectic tailored hodge-podge of “therapies” either (there is nothing medical about learning and growing, just because we’re autistic doesn’t change that).

It’s hard, and elusive, to describe what it is, though. Many of the skills we need and regularly use to survive in the world have few English equivalents. The shape of how we do and don’t grow is not diagrammed out as it is for non-autistic children.

The majority of books on autism, even by experts, provide bizarre and improbable explanations of surface behaviors, and perhaps how to change them, and nothing more, often missing the most important elements of our lives altogether.

Even many books by autistic people involve us explaining ourselves in their terms. Some of the reason for this is that the official terms provide some of the only language we can find to describe ourselves, it can be hard to generate entirely new words for entirely new concepts on our own, or to filter out what other people do and don’t want to hear about, so many of us use the official versions even if we instincitvely know there’s something wrong with them. It’s rare that you find an autistic person who can describe these things without referring back to dubious concepts, and I certainly don’t find myself up to the task most of the time. This isn’t because we’re mysterious, it’s because we’re dealing with a language that has few reference points for our experiences. Even the aptly named paper You Don’t Have Words to Describe What I Experience shoves and force-fits our experiences into non-autistic boxes while trying not to.

Which, I suppose, is one of the reasons that the presence of autistic adults is invaluable, provided they’re not adults who regurgitate wholesale those force-fitted views of how we work or should work, provided they’re respected as people and not zoo exhibits or constant resources. People who understand how we do grow and can tell the difference between “cat-growth” and “dog-growth” and “something going wrong” really are important.

As an example, a quote from a Usenet post by an autistic adult:

When I first read this I could tell, without going back to check which child was whose, that your son was under six years old. I don’t want to denigrate the value of early intervention, which can give autistic children a valuable head start in learning to function in the world– provided, as always, that the intervention works with rather than against the child’s natural processes. But even with no intervention at all (as long as you didn’t put him into a sterile, mind-starving institution that wold cause environmental retardation in any child), he won’t spend the rest of his life doing that. Your comment is similar to a Martian parent who had accidentally been brought a human child (by a stork with confused navigation skills), and who, without learning about the normal course of development for humans, said, “I hope that someday my child will be cured of being human. I don’t want him to spend the rest of his life crawling around on the floor and eliminating in his clothes.” Your son will develop other interests as he gets older–maybe interests that will be more comprehensible to you and maybe interests that you’ll find equally bizarre, but other interests in any case.

That’s from this post by Jim Sinclair, years ago. Xe could tell what many non-autistic people are not familiar with, which is the typical ways in which autistic people develop over time. Xe understands “cat growth” (or “Earthling growth”, in that analogy) while everyone else is expecting “dog growth” or “Martian growth”. I find this all the time in conversation with non-autistic parents, who mean well but honestly believe that for instance no speech at the age of three means their child will never talk, when many autistic people learn speech between the ages of four and seven or even later.

It’s hard to explain these things, though, when we can so often perceive them, but other people are so often seemingly unable to perceive them at all. I suspect, in the end, it’s a lot like trying to explain non-autistic social nuances to autistic people.

The meaning of power.

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When I was a child, my family kept rabbits. We kept them in hutches in the backyard. They rarely got out to play or interact with anybody. They were confined to small hutches for their entire lives.

When I got older, and began to experience confinement myself, I began to see that this was wrong, but still did nothing for the rabbit who lived in a cage now high up in a tree to keep him away from the dog. I was still a child, but I was more aware that rabbits must not belong in small hutches in backyards.

As an adult, I came across information from the House Rabbit Society, which I’m now a member of. They said plainly that keeping a rabbit confined to a backyard hutch is like doing the same to a cat, or (proportionally increased) a human. They are a social species and solitary confinement is awful for them. They need room to run around and play and that is not possible in a hutch.

Nobody in our family bore the rabbits any malice. But each rabbit lived out their life in solitary confinement, and died in solitary confinement. I have experienced long-term solitary confinement, and it is not just the lack of socialization, but the lack of anything to do, the looking forward to only meals as the high point of the day, if you get those… it is highly unpleasant. It must be more unpleasant for a member of a prey species that depends on others of its kind for protection and survival at all times.

I talked to my parents about it when I found out. My mother said, “I had no idea. I had no idea.” My father said, when I brought up animal neglect, “I think I know what you are going to talk about. And… you had help [in neglecting the rabbit].”

I know that I’m now going to live forever with the fact that one animal that I could have done something about, spent his life and died in highly unpleasant circumstances, ones I know the unpleasantness of because I have been subjected to them, only he had no way out. That is the rabbit from when I was older. Aptly named, Reality.

When I was growing up, my parents told me stories about people who “let their rabbits run around the house and had them litter-box trained”. The idea always struck them as somewhat ludicrous, a little crazy. Again, they bore rabbits no malice. They would not view themselves as cruel to animals. And yet until I became old enough to learn about it, I absorbed some pretty strange values about animals (including that it was okay to dump a rabbit by the side of the road in his old age, and that, having spent his life in a cage, he would still live a wonderful life in the woods and not, say, starve or get eaten almost immediately).

a picture of a rabbit in a hutch

That is the meaning of power.

It is not comfortable. It is very possible to get defensive about it. It is scary to wake up to it. Much as Dave Hingsburger has described in Mourning Has Broken, it took a long time to fully realize what had happened.

When I posted this story elsewhere when I was finding out about this stuff, one person got very angry at me. He told me that he didn’t care if I’d found out about how things really were, it was too late, and he’d never trust me. I told him that I didn’t mind that because it might just be one of the consequences of having mistreated a rabbit, even as a kid. I will never, after all, get a chance to make his life any better, or to apologize to him. He’s dead.

I feel bad about it, but feeling bad won’t actually do anything, so I try to cut that off. What will do something is changing my ideas about power, about how I relate to the world. What will do something is telling other people what happened, what can happen, to rabbits everywhere. What will do something is applying this knowledge to other areas of my life.

There are a lot of myths about power.

One of the ones Hingsburger describes is the myth of not having any power, and therefore not being able to abuse that power. “Front line” staff often think they have no power because they are at the bottom of the staff hierarchy. But they are still above inmates/clients in the hierarchy. They can use their “powerlessness” as an excuse not to examine how they are treating other people. When I had power over that rabbit, I had power over almost nobody and nothing else in my life. But I still had power over that rabbit and I misused it, not out of intentional abuse but of neglect. (My father has pointed out that I had help. I did. But I still have some of the responsibility.)

Another myth about power (which I don’t know if it’s in Power Tools or not, because every time I buy a copy it gets snagged by staff and never returned) is that if you’re a good enough person, you will never misuse power. In fact, the more power you have over someone’s life, the more likely you will be to misuse it. Even if you love the person from the bottom of your heart.

In Same, Different, Human (a good review as well as a place to snag a Power Tools quote), Cal Montgomery says (quoting Hingsburger):

“I don’t believe that most people realize,” he tells us, that “they have power,” that “they routinely abuse that power,” that “their behaviour is invisible only to themselves,” and that “their responsibility isn’t diminished because they ‘didn’t mean to’ ” (Power Tools, p. 4). That’s not merely a description of most “direct care” staff; it’s a description of most people.

When I say that I bore the rabbit no malice, by the way, I am not trying to say that to make myself into a better person. I am saying that because it’s all the more horrifying to a lot of people the amount of damage we can do without meaning to, the amount of power we can wield without being consciously aware of it, the amount of evil things that can happen in the name of good or neutral intentions.

Some people will never force a rabbit to endure the suffering I forced (by neglect) on Reality. But everyone will be in some situation where they had power to change something bad and did not use it, or had power and misused it to do wrong. And many of us will be on the other end of it. My example is extreme. But it still happens that those without as much power in a given situation will have power exercised over them, and sometimes it will not be in a good way.

Recently I was describing the clinical words that are used on autistic people, and how there’s a difference between an adult with the power to define themselves, and a child looking up to caregivers and hearing them use certain definitions on them. Someone accused me of objectifying parents, of accusing him of abuse, and several other things.

Being aware of the power we have in the lives of others is not objectifying, and it is not necessarily an accusation of abuse. Abuse of power does not always result in the kind of abuse that people talk about as in “child abuse”.

But being unaware of power is a fast strategy to abusing it. I used to have a staff person who viewed all people as on an artificially equal plane when it came to power, she became terrified at even the mention of her having more power than some other people. The concept that, for instance, she can walk down the street without getting picked up by the cops, was more than she could take.

And she did abuse power, even though she was not abusive of people in a way that legally counts as abuse or anything like that, she was not an “abuser”. She abused power in subtle ways, controlled people, including people she loved, in subtle ways, and because she was unwilling to think about power, she was unable to curb her abuse of it. When people brought power up, she said, “I’m not that kind of person!” As if there is a specific kind of person without the potential to abuse power, and as if trying not to be “the kind of person who could abuse power” would magically make her someone who couldn’t.

When I talk about power, I am not dehumanizing anyone. People may disagree with me over how to use it, and I expect that. What surprises me still, for some reason, is the unwillingness to look at power and how it is used.

When the people with a lot of power over you are people that you know love you, screwups when it comes to power are worse. It was worse to hear from my father that I was “backsliding” when I could not do something anymore, than it was to hear it from professionals. It is worse when I am unable to type and my best friend screws something up in an attempt at translating what is happening for me, or screws up at FCing me, than when a random stranger screws something up. It is worse to hear certain things from people who love us. Their love does not make them immune to misuse (intentional or unintentional) of power, but it can make it more agonizing and problematic for us when the slipups happen.

Being a rabbit in a human household means that you have almost no ability to escape if the humans try to confine you. Being a human unable to talk back, or less able to talk back, or less able to filter information, means you have less ability to change certain ways you are being treated. A mother or father can go through years of their life innocently and lovingly describing their son, now a teenager, now an adult, as “having the mind of a 2-year-old child” and “utterly incapable of thought,” and he might be able to do very little to stop them. This is part of power too.

Misusing power does not always make you an “abuser,” nor does it always make you any less loving than the next person. But it is… a human thing to do. People do this. It happens. It doesn’t make it right. But if misusing power makes someone a bad person, then every last human being is a bad person, and I don’t think that is true. What is true is that we all have the potential to screw these things up, but we also have the potential to deal with those screwups. When I point these things out about power, it is not meant as a personal insult. It is only meant to point out things that happen to everyone. As I said in another post, it doesn’t mean I’m calling you a bad person, I’m just calling you human, and I don’t hold myself exempt from any of this.

I am also not trying to make anyone feel guilty. Feeling guilty is not useful after you’ve been reminded enough of what you’ve done, or have the potential to do. Figuring out what to do, is more useful.

“I know who you are and I want that person back.”

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I thought I had written a blog entry about this topic already. I looked around, though, and all I could find were things that touched on the topic without making it the main point of the entry. So here, I am writing about how other people think about regression.

Before I get started, I want to point out that non-autistic people do things that, were they autistic, would probably get called regression. They lose the ability to make and discriminate certain differences in sound, an ability I never lost. They lose the ability to discriminate between non-human faces. This is considered a necessary part of their development. When autistic people lose abilities or appear to do so, the reason it gets called regression is not because we are losing abilities, but because the abilities we are (or appear to be) losing are ones that are very important to the people who get to define what is and isn’t regression.

But there’s something that happens to autistic people, when we change in certain ways.

Other people have an imaginary version of us in their head. That imaginary version of us grows along with what they have imagined up about how non-autistic people grow. That imaginary version, that ghost, grows right alongside the autistic child. But it is a ghost, and it is imaginary, it is not a real person.

I have undergone two major periods of drastic change in my life, that most people would label regression. I believe those periods to be not only not what people thought they were, but important and essential periods of growth. I was growing forwards, not backwards. But nobody could see the trajectory.

The result of this is that most people had formed ghost-images of who they thought I was and would become, in their heads. Some of them loved these ghosts with all their hearts. When they talked about wanting the real person back, they were talking about wanting me to mirror the ghosts.

But I am not a ghost. I am a flesh and blood human being. My growth does not change just because some of the people that know me have ghosts in their heads.

Many people experience this phenomenon, to a degree, when they merely make decisions that are different from what their loved ones want. Imagine for a moment that it’s not a decision, it’s your entire brain shifting around, focusing on some things that a lot of people find unimportant or bad, failing to focus on some things that a lot of people find important or good. Imagine that the things it is focusing on are exactly what you need to be focusing on. You are becoming the sort of person you need to be.

Then someone says, “I want the old you back. I want the real you back.”

Now certainly who I really was in the worst of the professional days was not who the professionals saw me as. There was a lot that people did not see about me. But who I really was was also not the ghost in my loved ones’ minds.

“I want the real you back” prompts the questions, “Do you know me? Would you love me if you found out this is the real me? Aren’t you supposed to love who I am, not who you imagine?”

Before anyone lashes out at me about that, those are just the natural sorts of thoughts that will flash through the head of many people whose loved ones are trying their best to rescue them from being who they are. Whether you do the things that frequently create those thoughts is entirely up to you.

By the way, this is even true of changes that are traditionally viewed as very negative. I have known of many people who, after brain damage, have all their friends say they want them to be the person they were before the brain damage. It doesn’t happen. It’s not real. It hurts them. It’s not that they wanted to get knocked on the head, it’s that who they are now happens to be a person who got knocked on the head, not the imaginary person that didn’t.

I happen to view the changes that have happened in my life as, mostly, different than getting knocked on the head. I would do them all over the same way, with one exception: I would have rather the people around me had not spent so much time referring to “progress” when I became more as they wanted, and “backsliding” or “regression” when I became less as they wanted, I would have rather not been set the impossible task of being someone I could never be, I would have rather never heard “I’m seeing a bit of the old Amanda” or “I want the old Amanda back”.

That can’t change. I don’t want apologies or discussions on the topic from people who were there at the time for me. It’s done. I’d rather not think about it, frankly. But I am writing this for the people who have the power to change that for their loved ones, right now, or who will in the future. That, rather than silly attempts to change the past, is what I’m after.

Also try to remember that some things you think you see in autistic people aren’t going to be true. Absence of certain behavior does not always mean absence of a loving nature, absence of understanding of certain things, etc. (I still get regularly accused of heartlessness, nothing could be further from the truth.) And what you view as your ordinary child being missing and stolen… no.

Now, after writing this, I see that I have written a few things about this on my other blog.

See:

Let’s play Assumption Ping-Pong!

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In my last post, A Long-Delayed Reply to the Schafer Report, I touched on something that I’ve described before as like watching a ping-pong game.

I wrote:

I am frequently represented as having spent my entire childhood in an institution, as never having spoken in my life, and as only having been in one institution, usually people assume the kind reserved for developmentally disabled people. In fact I only spent part of my childhood in institutions, I spent time in several of varying sizes and shapes and with varying kinds of people inside, and I have produced plausible-sounding speech sounds with my mouth in the past. Some people view me as misrepresenting myself when they find this out, or even as lying about events in my life, but it’s usually more a matter of the fact that I’m not going to tell my life story every time I meet someone, and my life story defies enough stereotypes that people’s initial assumptions are likely to be wrong. It’s simply too complicated to give out every nuance every time I talk to people, and I am aware that people assume all kinds of things that I don’t have the time to correct them on. If I cannot now speak, have spent time in institutions and say so, and did so in childhood, people fill in the blanks with the rest.

Generally, when people see that I type to communicate, they assume some combination of:

  • I can never or only rarely form useful speech.
  • I started typing through facilitated communication.
  • I have never been able to form useful speech, or even useful-sounding speech.
  • I always type as well, or as poorly, as I am typing when I first meet the person.
  • I have trouble with the mechanics of speech, but not with language.

Now, some of these are true.

I can never or rarely form useful speech. My utilitarian (as opposed to just random sounds) speech skills vary from none at all to assorted grunts and the occasional word or phrase. And the occasional perfect French sentence that leaves me wondering how on earth I got wired like that, but that has very little practical value.

Some of these are true only some of the time.

I do not always type well, nor do I always type badly. I can type anywhere from among the fastest typists out there, to so slowly that it’s hard to see I’m actually moving.

I sometimes have trouble with the mechanics of speech but can type perfectly good language. I often have trouble with language too, and have to expend a lot of effort putting it together.

Some of these are not true at all.

I did not start typing through facilitated communication. I started typing when I took refuge during breaks at school in a computer lab that had a typing tutor program. I learned to type by doing what the screen told me, and I drilled myself until I became faster and faster.

I did not always have trouble speaking to the degree that I do right now. I gained a small amount of speech as a child, lost that at the usual age that many autistic children lose that, gained more for a bit, and then gradually lost that as well. My suspicion is that speech has always been something that takes a lot of brainpower, is unnatural to me, and is one of the first things to go to conserve energy for more important things, and has now been more or less permanently done away with. (This does not mean this was a choice, this is a set of priorities reflected in the way my brain functions, not in my own decisions, although I happen to agree with it.)

But… this is only just the beginning.

When I explain all these things to someone, it is rare that they understand what I mean. They tend to create a whole new set of assumptions, including:

  • When I did have speech, it was always functional, as in it always connected to a thought I was trying to convey.
  • I never use facilitated communication.
  • I started being able to meaningfully communicate through typing as soon as I became able to physically type.

Well… not so fast.

When I did have speech, it varied from connected to thought to totally disconnected from thought.

I use facilitated communication sometimes, ranging from support at the wrist, to the elbow or back, to someone sitting near me.

I learned typing-as-communication separately than I learned typing-as-mechanics, although typing was always more firmly connected in my brain to communication than speech was.

And this isn’t even the end of it, believe it or not. Some assumptions that tend to follow on from that:

  • You could tell the difference between speech that was connected to thought, versus speech that was disconnected from thought.
  • My facilitators are trained in FC by FC professionals and move in FC social circles.
  • My facilitators are always human.
  • My speech is free from “facilitator influence”, whereas my facilitated typing is suspect.
  • Writing, typing, and speaking are the only forms of communication I have used.

Speech that was connected to thought and speech that was disconnected to thought could sound the same to a casual observer. They could sound very much like they should have been connected to thought, and they could sound very much like they were just words being said with no real communicative purpose. Either one. And most outsiders could not tell the difference.

Facilitators have generally learned to assist me with doing things, not just specifically with communication, through long periods of interaction with me. They learn which body parts to touch, in what way, for how long, and when, in a very natural way that reflects general interactions with me. They become people who can sit next to me in a particular manner that helps me order my thoughts and movements. They are never told specifically “this is facilitated communication,” the facilitation I use for many actions is just part of what they do for me, and happens to extend to communication sometimes.

My cat is formally recognized as a service animal specifically because she has a knack for those exact ways to nudge, poke, press, and support me. Teaching her to assist me in these areas was easier than teaching some humans. Therefore, technically, my cat is sometimes my facilitator. (I wonder if anyone will accuse her of writing for me!) This may be funny, but it’s not a joke, this is true, she is a service animal because of this.

A cat climbing boxes in a bathtub with a caption reading 'My Longest-Running Facilitator'

I have certainly experienced unpleasant levels of undue influence from facilitators before. I have a vivid memory of someone helping me move a spoon to my mouth (not by grabbing my arm and pulling, just by applying pressure in the right spots), and I wanted to do something else with my hand. By the miniscule tightening and loosening of their own muscles, in a way they weren’t even aware of, they made it impossible for me to move my hand the way I needed to, but I could freely move it the way they wanted or expected me to. And I have experienced other forms of ‘influence’ of this nature as well.

However, my experience has been that it is much easier for someone from the outside to influence my speech than it is for them to influence my writing. Perhaps because most of my speech has been the result of “outside influences” of various, not always good, sorts.

My experience has also been that there are people who can exert a certain kind of influence without touching me, from anywhere in a room. They somehow never get called on it, while people assisting me with communication are always regarded as the ones doing it. (I have a strategy of spotting and avoiding such people, but it is not always possible for me to avoid them. They’re generally easy to spot though.)

I have used many other types of communication. Some of it is only visible to other autistic people. Some of it is only visible to people who’ve been institutionalized. Some of it is only visible to people who’ve been institutionalized and had significant problems with standard communication methods (or been prevented from using them). Some of it has to do with the arrangement of objects, the placement of music, and other things that are subtle to most people but do have a language.

Some of those are more comfortable to me than words will ever be.

…and believe it or not, this can go on. And on. And on. Not only in the area of communication, but in nearly all possible areas.

Obviously, very little of this can or should be said in brief interactions with people. This means that people are almost certain to draw several wrong conclusions about me, all at once, and then relay them to others, who believe them as fact.

To be clear, I don’t think there is anything too unique about these aspects of my life. It is not the uniqueness, but the departure from stereotype, that confuses people. It’s a situation where anything that I say will be taken in one more stereotypical way, unless I spend a lot of time chipping away at it.

This is one reason that I hate being told I mislead people. I do not intentionally tend to mislead people. What happens is that people’s brains mislead them and they blame me for it.

I once got a series of sharp accusations of lying, from someone who assumed that I was in an institution throughout my entire childhood. Now, I hadn’t said this to them. It was not true. I had not even hinted at it. But the fact that I was in institutions for part of my childhood means that many people will read it as that. This particular person became very vicious and started demanding to know how I did various things that happened outside institutions, if I was inside institutions at the time. (Simple: They happened at different times.)

Another time, someone told me that having had a boyfriend meant that I wasn’t as severely impaired as I made it sound with my descriptions of my experiences with perception and action. He acted as if I was deliberately misleading people when I described my experiences. The fluctuations in ability over time, combined with the circumstances in which I had a boyfriend, combined with everything else, were not things he contemplated before accusing me of lying or exaggerating.

These are representative of many people who regard me as a liar rather than recognizing their brains as lying to them about the meaning of what I say.

My life is an extreme departure from stereotype. It is not the form of departure from stereotype that is easily resolved by taking on another stereotype, because it pokes right through all of them and all the edges. It is not that my life story is all that unusual — I have had people mistake me for several other people with similar life stories — but that this kind of life does not fit any prevailing stereotype of autism or even of human functioning in general, and it does not fit in a really, really big way.

It is easy for people to assume that I am simply stubborn and wish to refuse to be pigeonholed. Actually, a nice pigeonhole to settle down in would sometimes be very comfortable and inviting. There are just none that actually come close to fitting my life. So I can’t use any for very long, even if I want to.

It would also be easy, in a way, to just let people assume, and in many cases I do, because there’s no possible way of conveying everything in a short time. It is utterly exhausting to be slapped in the face with people’s accusations and assumptions based on the way my life and body won’t bend to what they want it to bend to. It is utterly exhausting to watch people play ping-pong with stereotypes, to correct people only to have them bounce to an opposite stereotype that is no more true than the first one.

If it were just about me, I might leave it at that. I might say, “It doesn’t matter that some people assume just by my writing that I fit their ‘high functioning aspie’ stereotype, and others assume by what I write about that I fit their ‘low functioning autie’ stereotype, and so forth. I know who I am, my friends know who I am, that’s what’s important.” And in a way, it is.

But it isn’t just about me.

A lot of things about autistic people’s lives are decided on the basis of assumptions like these. If some of us are able to make visible the discrepancies between the assumptions on how our bodies work, and the reality, then it makes us more visible as people and less as caricatures. There is something quite important about that. About saying “Hey, wait a minute, we will not be buried under your cardboard cutouts, we are real people, and we exist! We exist in more diversity than you may even want to know.”

You Have It So Good

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[this is a repost from my old blog, since several things link to it at my old blog which isn’t showing much sign of coming back soon, other old blog posts should follow eventually]

You Have It So Good is the latest addition to the Autism Information Library on autistics.org.

I have a lot to say about it. A lot of it is stuff I won’t normally say or stuff I’ve never said all at a time before.

Fortunately in an odd way for me, there’s something stereotypical enough about me that I got services after I moved out of my parents’ home. But due to the fact that I was so isolated at the time, most people, even my family, don’t know a lot about what the time in between moving out and getting services was like. And there was quite a stretch of time in between, in which I honestly believed that I needed to go back to a group home because I’d been brainwashed like everyone else into believing that significant levels of assistance only came from institutions. I just had no clue how to get back to one, which is fortunate.

I rented a room that shared a wall with a bigger house. There was a family of people living there. The little boy — homeschooled, therefore nearly always home — tormented animals, including my cat. His mother’s only response? “I can’t make him care.” (She also held the incompatible belief that he was exquisitely sensitive to all suffering because he’d supposedly screamed about blood when someone was cutting down trees.) The neighbors across the street were often threatening the neighbors next door with death and violence, and I was glad that my little add-on attracted so little attention that even the mailman didn’t always know it was there.

I spent most of my days doing — and able to do — very little. Unless you count banging your head on the wall, because I did a lot of that. My epilepsy was uncontrolled and I once found out I’d been having seizures for twenty minutes. I was in a redwood forest in the mountains of California, and there was mold everywhere. This meant a lot of migraines. And not thinking straight. At all.

Meanwhile the professionals in my life were angry because I’d abandoned them and my parents had allowed me to get away with it. Several predicted death and other dire consequences of living outside their clutches.

Sometimes I was able to drag myself outside, where I sat in my driveway and lined up stones or stacked them on top of each other. Then I went back inside. Sat on the bed. Or the floor. I was disoriented a lot of the time. In a two-room apartment. Couldn’t find the kitchen. Or the bathroom. My perceptions got so mangled that it was often a wonder if I could tell the floor from the walls. I fell down a lot.

I also froze in place more and more, and it became harder and harder to get going. Going to the bathroom, in the bathroom? Not always likely. The floor or the front yard got used just as much, and I often had to sit in it because I couldn’t move enough to take care of it. I sat and didn’t move a lot. And sat and rocked a lot. Screaming, head-banging meltdowns were also common.

Meanwhile my neighbor occasionally came by and tried to scare me with stories that the house was haunted. That "The ones you have to worry about are the ones without bodies." Apparently she and her husband wanted the entire house to themselves but couldn’t afford to rent both their house and my add-on. So they’d gaslighted several previous tenants right out of there. One time while I sat in the front yard, their boy walked up to me and said “I hope you’re not crazy like all the other neighbors.” “Crazy” was what it was called when the previous tenants had believed the stories, which his parents denied telling, at least in front of the landlord. Meanwhile, the neighbor offered me lessons in black magic, which I declined.

Then there was food and water. I couldn’t buy or prepare a basic meal. I set a few things on fire trying to operate the stove. If someone gave me step by step prompting on the telephone, all day, I could get at least some food. But not enough. I got thinner and lying down got uncomfortable because of the way my bones poked into things. This prompting wasn’t just “Pour water in the pot, then turn the stove on.” It often started with moving one limb or digit purposefully. A prompt that had to be repeated over and over for me to be able to do it. Repeat for every step and you can see why it took all day. And this isn’t to mention all the times that I couldn’t understand or obey the prompts and started screaming instead. The phone bills were huge and the person at the other end of the line, autistic and physically disabled herself, was running herself into the ground.

There was a lot I didn’t understand how to do. And even things I understood, I couldn’t do because of the rapid interplay of perception and reaction they required. Getting through the day was exhausting, and getting through the day didn’t even mean fully meeting even one of my basic needs.

At the same time all this was going on, I was dealing with the aftermath, both physical and emotional, of years of intensive “treatment”. I’d been off of neuroleptics for five months when I moved out, and the worst part of the withdrawal was over, but I was still regaining some cognitive abilities. Until I realized it was doing me more harm than good, I was still on the super-restricted diet that I’d been pressured into accepting. And to say I had flashbacks of institutions would have implied I’d grasped yet that I was not living in one anymore. Which I hadn’t. I’d barely started making any chinks in the idea that thinking for myself wouldn’t kill me.

And I had a bunch of untreated infections and serious health problems because as usual I couldn’t communicate adequately to describe what was happening to my body.

If this sounds like a disaster, that’s because it was. But it was also a time period when I was discovering how to communicate with other people — how to attach words to the things inside my head in order to bring them outside my head — by typing. I was discovering, odd as it sounds, that I was a worthwhile person who had a place in the world. I was starting to see disability in a political context rather than the tragic, individual, and medical contexts I’d seen it in before. I had to fight every step of the way for this: Every piece of training I had said I was not supposed to think these things. Online, I read parents doing the same things to their children that had been done to me. I cried. A lot.

The computer was the only physical place I felt all that competent. I was learning about communication, and things were finally snapping into place there that had either never snapped into place that way before or been lost a long time ago in one of the so-called regressions. I started writing to pass the time. I wrote about things I was barely beginning to see: That people like me had some value in the world, weren’t just useless throwaways who belonged either locked up somewhere or cured, a lot of the same stuff I write today. I prayed a lot and wrote what I could perceive spiritually before my training could shut off expression.

The reactions to my writing were often horrifying. Today, I am surprised I was able to keep writing. Sometimes, of course, I wasn’t. But often I was. My daily experience became one where I could barely move in most voluntary ways without tremendous amounts of assistance, I was peeing on the floor, unable to eat, unable to speak, unable to get up and get a glass of water for myself, half-starved, barely able to understand my surroundings, “wandering” aimlessly outside, sleeping on a completely random schedule, looking so “non-functional” by ordinary standards that if the wrong person had seen me I’d have been in an institution fast for sheer inability to take care of myself. The local teens, if they saw me, found ways of “messing with” the “retard”. And then I would do the only thing I could do well in an outwardly-visible way — write — and get dismissed. Wholesale. Often viciously. As too “capable” to understand “real” autism.

I was not able, at the time, to write fully about what I perceived then. I tried, but I only got parts, and the parts I got probably confused people. What I perceived was a glaring contrast, so glaring that it was stunning. The contrast was between what the majority of online parents and even many online autistics thought of my life, and what my life actually was. It had been so ingrained into many that political opinions like mine are formed in good times, not in times of extreme hardship, that they had, pardon the language, no fucking clue what kind of person they were looking at and what kind of life I was living. And I wasn’t all that well-equipped to tell them because the communication skills I was developing were still uneven and it took a long time to get from knowledge to fingers, still often does. (That’s why you’re hearing this now instead of six years ago.)

People who had no knowledge of me in person were calling me a liar. They said I wasn’t really autistic. They said that if I really were autistic, I did not really live the kind of life I led. They said that I did not look like I did. They even told me that I could speak, that I had a job, that I had never lived in an institution, that I did not bang my head, that I had never had any of the “therapies” I was criticizing, that I could “take care of myself”. I was often torn between laughter and tears wondering how they would react if they saw me in person, a person who looked and acted like I could have been used as a poster child for the “keep institutions for developmentally disabled people open” movement, one of those supposedly-ridiculous examples of “Would you put someone this low-functioning in a house by herself???” I suppose I also could’ve been used as a poster child for the “cure autism” movement, considering that parents described my daily life or many things much tamer than that when they described futures they were trying to prevent by curing their children.

That was the contrast I lived, and to a large extent still live, although I now have enough services that I can do more than I could before. (Any break in these services and I go back to being able to either understand my surroundings or move but not both and often neither.) That is in fact the contrast many autistic people live. But few experience that contrast more than those of us who find that not only our writing skills, but what we write about, contradicts every stereotype of the sort of person we are in the offline world. Anyone who says “Autism is horrible because this is what my offline life is like, and you people just don’t understand how much misery autism causes me, you must be a bunch of high-functioning aspies if you’re autistic at all” is much more likely to be believed than those of us who may live a near-identical kind of life and continue to assert our right to be who we are. (Not to mention that the diagnosis of Asperger’s syndrome doesn’t mean a person couldn’t live this kind of life.) And many such people will turn around and tell us we’re liars just as fast as cure-oriented parents will, because it’s in their perceived interests to associate “(perceived) level of impairment” with “level of hatred of autism” and “level of acceptance of the status quo”.

I was, in a way, lucky that it was only one area that stood out in contrast to the rest. I can’t drive, work, pass for NT, or speak, and people know there’s something really weird about me when they meet me. That means that when I applied for services, although I have many times encountered resistance and misunderstanding, I qualified almost immediately. I got SSI on my first try. Same for in-home support services and Regional Center services. When I got that last one, I had to fend off people trying to institutionalize me in a level three group home, I now am told I would qualify for an ICF/MR if I didn’t have in-home services. While there’s occasionally question about why I do, and what kind of services I need, there’s very little question that I appear “non-functional” enough to get services. That doesn’t sound like a good thing but in some contexts it’s saved my life.

Note: I as always reject the terms low-functioning and high-functioning, and this isn’t an invitation to call me low-functioning. But many people would and have. That my insight or writing skills (some of the time, on both of those) don’t match the stereotype says more about the stereotype than it does about me or anyone else who’s ever had that label. When parents say their non-speaking children can’t possibly understand something, my main response is “Maybe not, but how do you know?” It’s been my experience that my level of understanding of my surroundings, of the world in general, of myself, or of anything else, is routinely under- or over-estimated even by those closest to me.

Joel Smith doesn’t often pass for NT, but he can drive, work, and sometimes speak. And he’s a self-advocate, no-cure, disability rights sort of person when he writes, not a woe-is-me my-life-is-hell-I’m-the-lowest-functioning-person-on-the-planet we-need-a-cure-for-autism type. All of that works against him in the stereotypes of many. This kind of stereotyping has got to stop. It may not sound like sophisticated disability theory, but these are people’s lives we’re talking about. He’s not the only one. The prevailing view of how abilities fit together, as well as of how abilities are connected to political views, has to change. Or people will die, and in fact I am certain that many people are already dead over exactly this kind of thing.

People need to stop spreading these stereotypes. That includes autistic people who think that by questioning our diagnostic credibility because of our political views, they will come out ahead services-wise. We’re all in this survival thing together and it’s not okay to sacrifice others that way.

I’m reminded of a post from way back in the depths of time, and apologies for digging this up but it describes the situation so well in the words of one of the most well-known anti-cure autistic self-advocates out there:

You know where this is leading to? I’m going to die here. Maybe soon, if this throat infection overwhelms what’s left of my immune system and turns into pneumonia. Maybe a little later, if I can’t shop or forget to eat for a few days too long. Maybe alone at home, if I have another bizarre accident that’s more serious than the ones I’ve had so far; or maybe on the streets, if my “weird” appearance attracts more violence of the sort I’ve been a target of all my life. Don’t think that just because I’m not mentally retarded, I’m any less affected by autism than your brother is.

That’s from a really old Usenet post by Jim Sinclair that can be found by clicking here. I can only imagine that xe must have been in a similar situation to the one that too many of us have experienced — that contrast again. I don’t agree with some of the statements made, particularly the assumptions about IQ, but I can imagine too well the situation that prompted that post.

It is also this situation that Laura Tisoncik wrote about in Why I Am Angry, saying:

I hate the parent-professional axis that rips people to shreds then drops them into oblivion when they hit adulthood. I hate anything and everything that pays lip service to autism services but with with all its resources couldn’t do what I could do with next to nothing. I hate autism societies that have no use or place for autistics except as an occasional token to perform as freak shows at conferences. I hate “child centered” organizations that leave adult children to eat coffee grounds when there are no more parents to serve. I hate a system that mourns for t
he purgatory of the parent but doesn’t even give a damn about the hell of the autistic.

If anyone wonders, I’m the “19-year-old friend” in that article and she’s the one who ran herself into the ground making sure I could survive while she was barely getting by herself. Anyone who thinks being autistic means lacking compassion doesn’t know her.

Sometimes, while barely (if at all) able to perceive my surroundings, move, perceive the passage of time, react, or some combination of those things, I laugh in my head at the contrast between my life and the way people online pretend to themselves that my life goes. It seems bizarre — and I can have a downright twisted sense of humor — that so many people think they know what my life is or has been like. Sometimes, though, I scream or cry, because I know what the cost of their misperceptions is to people like me, and it’s not a price I want me or anyone else to have to pay. Too many of us pay some or all of it every day.

It has to stop. One ability is not another ability, no matter how closely related (or identical) they seem in abstract stereotype-land. Period. The appearance of an ability does not mean the ability is there. Period. One ability some of the time is not one ability all of the time. Period. Political views on curation, institutions, or anything else like that, do not indicate kind or level of ability in any particular area. Period. All of those are true when inverted, too, appearance of obliviousness doesn’t mean obliviousness for example. Those of us who know this will not shut up about it, and people who don’t had better learn what’s at stake when they trivialize what is happening to us.

Endangered…?

Standard

Some geneticists are busy looking at parts of chromosomes 7 and 21 for a connection to so-called regressive autism. I’m still dubious about it being that simple, given that there are many possible causes for the things being dubbed ‘regression’. But if these are truly the main genes involved in this expression, then they’re probably talking about me: I lost prior speech abilities in early childhood and have lost a number of other abilities (including the speech I’d regained) later in life.

Meanwhile, the push is getting greater to detect autistic people before we’re born, so that we don’t have to be born. Eugenic abortion — as one person put it not the right to choose whether, but the right to choose who — is already so commonplace towards people with Down’s syndrome that one activist with Down’s syndrome, Astra Milberg, has commented that she feels like one of an endangered species, and several activists with Down’s syndrome protested at an international genetic screening conference for their right to speak out against this a few years ago.

I wish I could say I felt much of anything, but I’m more sort of numb. I know exactly where things are headed, and I will work as hard as I can to stop them just as I have been all along for people who already peg some people’s “don’t even get a chance at life” meters, but I guess I got the strong freaked-out emotions out of the way when I saw where this was going years ago. It’s just… weird… to know they’re getting this close to identifying the genes, and that they’re zeroing in on subtypes that sound suspiciously like mine.