4:51am March 20, 2014

slepaulica-feliscorvus-kathleenshimp-i

slepaulica:

feliscorvus:

kathleenshimp:

I was just thinking about how people who do not approve of self diagnosis of autism will sometimes claim that people are “faking their autism”. And it occurred to me that
“faking it” with any great degree of success would probably require a facility for pattern recognition that would in actual fact be associated with autism anyway… So… Hmm.

And, that’s what I just thought about.

That reminds me of how, when/if we (auties) are diagnosed, we have a tendency (well, a nontrivial number of us do at least) to second-guess it to death and come up with a plethora of reasons as to why it might be a mistake. Not because we do or do not “want” to be autistic, but because some of us really just want to be REALLY sure of a thing before we are okay with asserting it.

I think this is why I still undecided. Accuracy matters to me a lot. I want to be what I am and to say that I am what I am.

I do think that if I’m not on the autistic spectrum, then I am somewhere adjacent to it. Somewhere close by, with a lot of overlap.

Yes.

These people seem much more hung up on specific labels and the very act of classification than I am, to the point of some weird reification. What I am primarily interested in is a decent working hypothesis to help me figure out workarounds for difficulties, and talking to people with similar experiences. The specific externally applied labels for clusters of traits are not even my main interest there. Though, I will use whatever descriptor that seems to fit the best, according to my understanding. That may change at any time, and I’m mostly OK with that. What box you’re presumed to fit in is very approximate and dependent on interpretation, to begin with. (Though honestly, I’m better with patterns than 99% of the professionals I’ve seen, and am more inclined to trust my own interpretations based on a lot more information than they could ever have to work from. Some have certainly reached bizarre and sometimes harmful conclusions in past.)

I know I second-guessed my diagnosis for years, and was convinced that I must actually be some kind of fake, and it took me a very long time to do enough research to convince myself that I deserved to be a part of the autistic community as much as anyone did. I basically had to do enough research to convince myself that there was this really wide range of traits that can be autistic traits and that I fell squarely into the zone where there really couldn’t be much doubt about it. It still alarmed me when I went back into my records and found references to myself being described as “low functioning” and stuff because I couldn’t really believe that, especially given that at the time when I was labeled that way I could still speak and do a lot more than I could later on.

I never had the nerve to ask why they called me that, and now the person who did it is probably dead so I’ll never know. I also found about ten separate occasions in which I was diagnosed with atypical autism before I was finally diagnosed with regular autism, as well as at least one occasion of “developmental disorder not otherwise specified” (which is why I sometimes say I’ve been diagnosed with developmental conditions besides autism). My mother explained later that they didn’t say “atypical” when they were discussing it with her, that it only became “atypical” when it had to be put down on paper, where insurance would be judging whether I was worth ‘salvaging’ or not. And that the word “idiot savant” was also frequently used, out loud, in discussing the huge gap between my abilities and my areas of difficulty. Apparently “idiot savant” is the very first thing my psychiatrist said about me.

But all those paper and oral diagnoses would mean nothing to me if I hadn’t done exhaustive research into what autism means to people who have it. Because I could never, until I started learning to understand how I looked to others, understand how the external things said of autistic people applied to me. I could not identify with outward descriptions because I had only the flimsiest idea of how other people saw me. But I could identify strongly with just about every inward description of autism I heard by an autistic person.

For many years, though, any time an autistic person had some trait that either was different than me, or seemed different than me, I would second-guess whether I even belonged in the autistic community. And it wasn’t a neutral, intellectual exercise. It felt like being stabbed in the gut with shame and self-doubt. And to cover that feeling, I would start echoing what other autistic people said about themselves (sometimes accurately, sometimes not, just the same echoing I’d done of people my whole life), which would make me feel even more like a fraud later on and bring back the gut-stabbing feeling tenfold. Eventually I realized the connection between these things and quit echoing other people’s experiences, but it still took many years before I had the cognitive skills to actually describe my own experiences, as they were. And those severe communication and language problems were why I’d developed the skill of echoing people in the first place, and I eventually realized that that in itself was an extremely autistic trait.

These days I’m much less hung up on labels than I was when I first entered the autistic community. And I’m absolutely certain of my right to be in the autistic community now, and angered by anyone who tries to tell me that I’m somehow uniquely unqualified to be here. There is nothing about me that is grossly different from anyone else in the autistic community, other than the fact that I have bullies who dredge up things about my life that make me look bad. But everyone has things in their lives that would make them look bad if they had stalkers that liked to discuss them out of context and warp their meaning. It makes me angry that some of us get doubted because we are bullied in this manner, because there’s nothing about us, nothing, that is fundamentally different than other members of the autistic community, other than the fact that we have bullies bent on destroying our connections to any community we are a part of.

Unfortunately a lot of autistic people are very sensitive to being considered stupid, and our bullies like to play on things like that… “You’re not stupid, are you? You know she’s a fake, right? Yeah, I thought so, you’re smarter than someone who would be duped by her.” And that’s one of the biggest ways these bullies recruit followers, they frame everything so that the person feels smart by following them, even though following them is how people get duped in real life. But being duped is not about stupidity, people who get duped are just as smart as anyone else. It’s just that people who do the duping are extremely good manipulators and they know what buttons to press to get people to believe them. So I can’t really blame most of the autistic people who have gotten caught up in believing that I’m a fraud, they’ve had their buttons pushed by experts. I’m not an expert manipulator and even if I wanted to know what buttons to press to get people to believe me, I wouldn’t know it. But then even if I did know it, I wouldn’t do it, because it’s despicable.

But the funny thing, to me, about being considered some kind of autism fraud, is that I don't care that much about the category of autism. To me, there are only a few uses for labels like this:

1. To promote self-understanding, and to help others understand you.

2. To help you find other people like you.

3. To help you get services.

But there’s nothing real about the concept of autism. In fact there’s no such thing as autism. Autism isn’t a thing. The only thing that is real in this, is a very large and diverse group of people. And that group of people has been put under the umbrella of autism by psychiatry, which is one of the most notoriously imprecise excuses for a science that exists in the world today. The very idea of what autism is has been passed down through generations of shoddy guesswork. Who counts as autistic has always included people who fit the explanations of what autism means, people who look like they fit those explanations (but may or may not), people who fit explanations given to people who look like they fit those explanations but don’t, and so on and so forth recursively all the way down the line.

But autism itself is not real. The only real thing is us. We are real. Autistic people are real. But autism is just a concept applied to us. Fifty years from now, there may not be autism anymore. Some of us may be put into different categories, some of us may be kept in some category analogous to autism, some of us may be put into entirely new categories that don’t exist yet. And some of those categories will be more accurate and precise than autism, but some of them will be less accurate and precise. And today, we have no means at all of knowing how we will be divided up in the future or what name will be given to us.

I kind of startled someone by telling her this last year. She had gone into a discussion with me not really knowing what to expect. But she didn’t expect someone with a reputation as faking autism to say that autism didn’t exist, and that was her first clue that the rumors about me were just rumors, not reality.

I told her later that if I wanted to fake autism, I sure as fuck wouldn’t do it the way I live my life today. I would pick a single set of traits that would define me. I would stick to those traits day and night. If I could not speak, I would never speak. If I could speak, I would never not speak. I would always have the exact same body language in public, and it would never change. I would always have the exact same language skills, and they would never change. Everything would be rock solid and consistent, because people are much more suspicious of inconsistent abilities than consistent ones. If you really want to find the fakers – which I don’t think is a worthwhile endeavor, but if you did want to find them – you would do best to look among people who do not make waves, who have totally consistent abilities, and who claim to be exactly everything that psychiatry says autism is, with very little deviation from that. (Maybe just a little deviation to add color, but not much.)

That’s where you’re going to find the fakes. You won’t find them pushing the envelope, you won’t find them with shifting, inconsistent abilities, you won’t find them trying to argue with the definitions of autism, and you won’t find them saying that autism doesn’t exist.

Oh, but one place you might find them is among the people most eager to call others fakers, or to play lower-functioning-than-thou and more-autistic-than-thou. Because I’ve gotten some really weird vibes and true inconsistencies (like evidence of actual indisputable lying, not just evidence that someone isn’t what is expected or is force-fitting themselves to fit in) from a few of the people who are most eager to call everyone else a fake.

But I honestly don’t suggest trying to root out the fakers in our community, except in certain rare instances where it’s clearly someone who has infiltrated the community for specific purposes: Like an autism parent who is faking autism in order to undermine the autistic community, or a reporter who is claiming to be autistic in order to do a story on the autistic community, both of which I have seen happen before. But if someone just wants to be considered autistic, and isn’t, then maybe it’s just best to let them be. Let them call themselves autistic, they’re not really hurting anyone by doing that. Far more harm is done by witch hunts for 'autism frauds’ than is done by the tiny number of fakers that undoubtedly exist. Most of them are probably just quietly enjoying taking part in our community for reasons known only to themselves, and they’re probably unhappy enough already without the stress of being exposed. Plus you’re pretty much never going to find them because they will be the ones best at blending in. They will rarely be doing things to make themselves stand out as different to any other autistic people. The only time I’ve ever gotten a clear suspicion that someone is faking is when someone is a little too quick to call everyone around them a fake, then that’s when I start wondering if they’re projecting a little bit, or trying to throw the suspicion off of themselves by throwing it onto everyone else. That and one instance in real life when what someone was doing just wasn’t adding up and there was a huge amount of evidence that he was lying about a lot of really important things. But I didn’t confront him, he was a desperately unhappy person and claiming to be autistic made him happy, and he wasn’t hurting anyone by doing it.

I basically weigh out the consequences of each side of this:

One, you don’t spend a lot of time rooting out frauds. And you have a few people in the autistic community who aren’t supposed to be there. Generally they’ll be putting a lot of effort into blending in, they’ll be trying hard to look like everyone else, and to avoid having any traits at all that will throw suspicion on them. They won’t be creating very many problems, unless they themselves get obsessed with calling legit autistic people frauds, in an attempt to keep suspicion off themselves. But that’s not because they’re frauds, it’s because they’re being assholes. At any rate, there are not going to be very many of them, and the few that exist won’t be doing much harm, at least not by claiming to be autistic. Meanwhile, by not spending a lot of effort on this, you are saving the trouble that does come when you put a lot of energy into deciding who is real and who is fake.

Two, you do decide that it’s really important to figure out who is autistic and who is not. This creates all kinds of problems.

It makes the autistic community extremely unfriendly to newbies and people who are unsure of their identity. It can also make it unfriendly to people who are self-identified as autistic, as well as anyone who doesn’t fit stereotypes – whether stereotypes created by the outside world, or stereotypes created by the autistic community.

Guaranteed, most of the “frauds” you will find will be autistic people. Real autistic people. They will be some of the most vulnerable autistic people – people who don’t fit stereotypes, people who are different for some reason or another, people with a lot of additional conditions that confuse the issue, and people who seem to be lying because they care so much about blending in that they have tried to hide any traits that don’t conform.

Every time you find someone autistic that you believe is non autistic, it will have a chilling effect on every autistic person who has similar autistic traits and similar life experiences to that person. You don’t want to know the amount of private emails I’ve gotten from people with autistic traits and life histories similar to my own. People who are now never, ever going to describe their experiences in public because they don’t want to get the kind of bullshit I get for describing mine. People who are now forced to lie, not because they are frauds, but because they want to blend in to a community that might not want them if they said who they really are.

Which also has a huge effect on autistic people in general. Because if we are not able to describe where we don’t fit the stereotypes. If we are not able to expand the definitions of autism to include all of us. Then we are not going to have an accurate view of what autism is. So these witch hunts also have the effect of narrowing and distorting the idea of how autism can manifest in people, which has wide-reaching implications both for our community and for research and understanding of what autism really is.

Meanwhile, the most vulnerable members of our community are going to be living in fear, or fearing to even join our community for fear of being targeted in some way. This kind of search for fake autistic people always affect the most marginalized people, so in the autistic community that will mean people who don’t fit the stereotypes, as well as people who are extremely poor, extremely desperate, mentally ill, intellectually disabled, physically disabled, chronically ill, people of color, women, trans people, queer people, and so on. There’s no coincidence that I fall into many of these categories myself, and so do everyone I know who’s been targeted in witch hunts like this.

I’ve seen people targeted as fakes entirely because of membership in some of these categories. For instance, some of the autistic people most heavily invested in this stuff are autistic men who believe that there aren’t many real autistic women, and therefore that most autistic women online (by which they include anyone born female, and anyone who presents as female, they’re generally not up on gender issues) are fakers. I’ve heard really horrible things directed at autistic trans and genderless people. I’ve heard people say that real autistic people are mostly white, and that autistic people of color are therefore suspicious just for existing. And probably the biggest group I’ve seen targeted, besides women, is people with any real or presumed history of mental illness. Because apparently being autistic and mentally ill are mutually exclusive.

Basically, searches for frauds tend to tear communities apart and create an atmosphere of suspicions, as well as further marginalizing people who are already marginalized. Failure to find a fraud is not going to have that effect on the community, but attempts to find lots of frauds is going to have a horrible effect on the community, as well as resulting in mostly finding a lot of non-stereotypical people who are in fact autistic, and who will now have to face losing friends and community membership over what’s essentially a witch hunt.

I’ve lost friends. Not good friends, but still friends. I’ve lost people who would have become friends. I’ve lost the ability to move freely in a community that I badly needed at a certain point in my life. I can’t pretend that this loss was not devastating at the time. I also began to be riddled with self-doubt, not only in the area of autism but in other areas, and if I hadn’t gotten over that self-doubt it could have cost me my life. Because I have life-threatening medical problems that I was not taking as seriously as I needed to, because I’d half convinced myself that nothing I had could possibly be real. People who are much more vulnerable than I was, could have committed suicide under the strain I was put under and the loss of community. As it was, I barely ate for weeks at a time from sheer stress (but people claimed that couldn’t be true because I was still fat, and for some reason fat hatred played a huge role in the bullying I experienced, like the people calling me a fraud never ceased to take pot shots at my weight and grossly exaggerate how much I weighed, sometimes adding 200 pounds to my actual weight in order to make me look grotesque… I’ve lost 60 pounds as a result of health problems and one of these same bullies recently claimed that I haven’t lost any weight at all because I’m still fat, even though my clothes don’t even fit anymore). The risks involved in putting a real autistic person through the kind of bullshit I’ve been through, are far worse for both individuals and communities than the risk of having a few fake autistics running around. Unless you want that on your conscience, I’d advise easing up on people about things like this.

These people have not been content to bully me about autism, either. They have claimed that all of my medical problems are fake. They have claimed that I was never diagnosed with autism at the time that I was, and continued to claim so even after I’d posted dozens of pages of diagnostic records on the Internet (not something I advise doing, because then you’re divulging private documents to bullies who might use them against you in some way). They’ve claimed that nobody could have the number of medical problems I do, even though in reality medical problems tend to cluster and rarely occur alone – whenever I’m hospitalized, my roommates are almost always people with even more medical problems than I have. When I needed a feeding tube in order to survive, literally in order to survive, they interrupted a campaign to help me get the feeding tube, in order to tell everyone not to support me because I was supposedly a fraud. Of course, they don’t give feeding tubes to people who don’t need them no matter how much pressure you put them under, so the fact that I have a feeding tube at all is proof I’m for real. But if they had succeeded in undermining the campaign to put the hospital under pressure to stop trying to persuade me to go home and die, then I could have died. And some of these people are people who have threatened my life and whose stated ultimate goal is to remove the services and assistance that allow me to survive. So these are people who want me dead, and they’d do the same to you if they targeted you. And they could target any one of you. There’s nothing special about me that renders me the target, there have been other targets and there will be more targets after me.

Meanwhile, stress itself is potentially deadly to me. Not because I’d crack under the strain – I have nerves of steel by now, in trying to bring me down they’ve strengthened me in ways they can’t even understand. But because I have adrenal insufficiency, which means I don’t make enough cortisol (it was literally too low to measure) or ACTH (also too low to measure) and am dependent on steroids for the rest of my life. People with adrenal insufficiency can go into an adrenal crisis under either physical or emotional stress. Adrenal crisis can kill you, in fact most adrenal insufficiency is diagnosed after someone lands in the ICU or dies. So putting me under needless stress is not just an inconvenience, it’s life-threatening. Weirdly enough, I know other autistic people who’ve been accused of being fakes, who also have adrenal insufficiency.

So putting people under this kind of stress can have a lot of unforeseen consequences. It isn’t just an inconvenience. And the kind of stress that you are under when you have stalkers who are simultaneously trying to kill you, and convince your entire community that you’re a fraud? It’s horrible even without adrenal insufficiency. But with adrenal insufficiency, it’s a good way to land in the hospital or die.

And you don’t know, when you put someone under that kind of stress, what kind of reaction they will have. Some people who seem to have it together will completely fall apart and even have a nervous breakdown. Many medical conditions are triggered or made worse by stress, so you may be sending someone to the hospital or even killing them. So this is not some kind of thing that everyone should be forced to submit to in order to be a member of a community. It’s not okay to make this kind of thing the norm. And it’s not okay to target specific people and claim that you’re not having an effect on the entire community. Plus you can’t judge whether someone is autistic or not, in the way people have judged me and all the others before me. Every time you judge one of us you’re judging everyone like us, and everyone like us knows that. And if you jump on the bandwagon because you think that maybe if you target us, you won’t be targeted yourselves… well I can understand it, but it seems really cowardly to me to hurt other people, possibly causing mental breakdowns or medical problems, just so you won’t be targeted yourself.

And until you’ve been targeted in that way, you don’t know how you’ll react. You might shrug it off. But you might be like I was for a long time… it honestly felt like I was this tiny rat in a corner with this giant eyeball staring down at me, and I felt like I was trapped, no privacy, nothing. I lived in a constant state of terror, until I finally learned to deal with it. But nobody should have to learn to deal with it in the way that I learned. It was a horrible ordeal that I would not wish on my worst enemy. Not even the people who did it to me, deserve to be treated how I was treated.

And the most ridiculous part of it to me? It’s two things. One, that I was targeted even when people just like me were not targeted. Anne is as close to an exact copy of me as you can get, and yet people sometimes seemed to go out of their way to avoid targeting her while they were targeting me. Like, sometimes I’d point out to them, “she’s just like me, why aren’t you going after her?” and they’d only go after me even harder, like they wanted me to know that it wasn’t really who I was or what I was doing, it was that it was me, it was that they had a specific beef with me and wanted me to be hurt as much as possible. Two, that everyone was going into such a huge fuss over membership in an imaginary category. Like, people were acting like it was a life and death matter to figure out who ~really belonged~ in this abstract category of human beings, when nobody really belongs, or doesn’t belong, in an abstract category. Like, why is that so important? Could I just pull some category out of my ass and decide that the most important thing in the world was figuring out who really fit into the category and who was faking it? And how do you fake being in an imaginary category? It just baffles me.

So that’s my take on attempts to root out fakers. I think they do irreparable harm. And I think actual fakers tend to do very little harm unless they’re doing something in addition to faking. (And then usually whatever they’re doing, would be just as harmful if a real autistic person was doing it, so even then it’s not the fact they’re fake that is the problem.) And meanwhile, I think that most people accused of faking will be extremely vulnerable people who are not fake, and most people who really are fake will never be uncovered as fake because they claim to be everything that everyone expects when they think of autism, and rarely make waves. So even just as a logistical problem, these attempts to find fakers do not make sense at all. You won’t find the real ones, pretty much ever, because they’re really good at hiding. And the ones you’ll “find” will just be real autistic people who don’t fit your stereotypes.