11:29am August 2, 2015

➸ The Myth of "Official": autism and self-diagnosis skeptics

withasmoothroundstone:

I’m officially diagnosed, I once posted eight to ten different versions of my official diagnosis (PDDNOS, CNS disorder NOS (with detailed descriptions of autistic sensory and motor traits afterwards), autistic disorder, autistic catatonia, etc.) from over the years from the ages of 14 to 22ish, and I still get called a faker with alarming regularity. If official diagnosis meant anything to these people, they’d have respected mine more than they respect plenty of people who’ve done less to prove themselves than I have. The fact that they didn’t respect my official diagnosis, says everything. They only say this crap to manipulate people.

I also got accused of stupidly self-diagnosing for going in to see a doctor and saying “I think X may be going on”. Which was ultimately wrong, but he (and several after him) concurred that X probably was the problem.
That would usually be considered a totally fine and normal course of action if you were talking about something more value neutral, like high blood pressure or a broken arm.
But, when it’s something stigmatized which somebody else doesn’t want to hear? That can also be “self-diagnosis”, and it’s your own fault if you get abusive treatment and/or things just don’t work out well.
Funny how that works, with the moving goalposts.

I’ve noticed that too.

Also misdiagnosis gets seen differently depending on the diagnosis.

Like I’ve been called a liar for saying I was diagnosed with autism at the age of fourteen.

Why? Because my diagnosis was changed to schizophrenia (at least in the eyes of some of my doctors, not others) when I was fifteen, and when I was sixteen or seventeen I wrote something publicly about being diagnosed with schizophrenia and “wanting to work with autistic children” (read: I had an autistic friend and people told me this must mean I “should work with autistic children” and I was pretty echolalic still when I wrote that and yeah), and therefore I couldn’t possibly have been diagnosed with autism before that point, because if I had, I would have just said I was autistic.

And somehow, like, I wasn’t supposed to be confused. I wasn’t supposed to believe what doctors told me when they said I had been psychotic since infancy and schizophrenic since adolescence. Even though they not only told me that, but told me I would never get better until I began acting schizophrenic (if I didn’t say I heard voices I was told I was in denial, just as an example), and I was living 24/7 in an environment where these people had total control of my life. I was supposed to somehow know that you can’t be psychotic from infancy. I was supposed to somehow know that these people who had control over my life were reading everything they said about me and my family, almost verbatim, straight out of a book from the seventies by Frances Tustin about autism and childhood psychosis (most of the “childhood psychosis” she was talking about would now be considered autism, including regressive autism). And that these doctors themselves were throwbacks with an antiquated view of both autism and psychosis, antiquated even for the time period this was taking place in. I was supposed to know all this as I was going through it as a very confused autistic teenager with a lot of emotional problems due to long-term abuse of a number of kinds from a number of sources.

The fact that I believed my doctors at the time and said exactly about myself what my doctors told me to say about myself is now thrown back in my face as evidence that I’m a liar and that I must really never have been diagnosed with autism at all, or only diagnosed in adulthood.

Read that again.

I said everything my doctors told me to say.

I believed everything my doctors told me to believe.

I did everything my doctors told me to do.

To a fucking fault.

And the fact that I did that.

Gets thrown back in my face.

As evidence that I need to listen to doctors more and that I probably “self-diagnosed” (i.e. “didn’t listen to doctors”).

Also note the assumption that you can’t ever be misdiagnosed after a correct diagnosis.

[This gets seriously long after this point. Be warned.]

Which is like, imagine it’s with a sprain versus a break.

You go to a doctor who correctly diagnoses a sprain. You call it a sprain for awhile. You’re still having problems, later on, and you go to another doctor, who diagnoses a hairline fracture that just didn’t happen to show up on on the x-ray because it was that minor. So you start saying you broke the bone rather than sprained it. Then later on it’s shown that the bone was never broken, but was actually sprained.

THAT happens all the time. And people will pretty much never call you a liar over that. Like I know that when people say “people will pretty much never call you a liar over that”, there’s always examples where yes, some people will call you a liar over something like that. But even when I’ve had really shitty doctors I’ve never had a doctor or anyone else on the planet, even people who hate my guts and call me a liar over nearly anything call me a liar over the confusion that happened over whether a finger injury was a break or a sprain (it went back and forth several times before settling on sprain).

But get diagnosed with autism, undiagnosed with autism and rediagnosed with schizophrenia, then undiagnosed with schizophrenia and rediagnosed with autism, and you’re a liar if you say you were diagnosed with autism before you were misdiagnosed with schizophrenia.

Like, I had a guy tell me (lying to me, mind you but nobody calls him a liar even though he was blatantly manipulating me) that he would make a public apology to me for calling me an autism faker, if I’d just tell him when I was first suspected of being autistic, and when I was first diagnosed.

I told him, with full honesty, that I wasn’t sure when it was first suspected – possibly when I was quite young, possibly as I got older, possibly not until I was 13 or 14 and in the process of being diagnosed. Because I don’t really know if, for instance, the doctor my mom asked questions of when I stopped speaking as an infant, suspected autism and didn’t tell her, just for example. And I don’t know when my family began to suspect autism. But I know for a fact that I was first diagnosed when I was 14, because I’ve seen the fucking paperwork and it’s that simple. And I told him basically that.

He came back with, basically, “Liar. We know you said you were schizophrenic when you were [16, 17, whenever I wrote that thing].”

Which, yeah, I said that.

I also didn’t really understand my autism diagnosis when my autism diagnosis was first made. I heard about it. I read a couple books by autistic people and even identified with one of them a lot, although I didn’t necessarily connect that with my diagnosis at all. I heard the words “underlying developmental disorder” being said a lot. But these words had no real meaning to me, so I didn’t run around publicly applying them to myself. I preferred words I understood, even if those words were for things I didn’t have. There’s complicated reasons for that, but I have written about it before and I don’t feel like, in this post, getting into every detail of my mental state as a teenager with communication impairments that were not very well-understood at the time by me or anyone else. Suffice to say there are plenty of reasons I didn’t run around calling myself autistic when I was first diagnosed, and plenty of reasons I did run around calling myself schizophrenic when I was diagnosed with that, and some of the reasons in both cases were intrinsic to me and some of them were results of the environments and pressures I was subject to as the diagnoses happened.

But simply the timeline:

Autism diagnosis and re-diagnosis and re-diagnosis several times over the course of the age of 14-15.

Psychotic since infancy/schizophrenic since early adolescence diagnosis, and schizoaffective disorder diagnosis, over the course of the age of 15-17.

Autism re-diagnosis and re-diagnosis and re-diagnosis several times over the course of the ages of 17-present.

Simply that timeline has been used to tell me I’m lying about the first diagnosis because apparently doctors don’t ever flip-flop like that. Or in my case, the patient is never flip-flopped back and forth between different doctors like that, or subjected to any pressure at all to conform to the diagnosis they’re given and the life path they’re told they ought to desire.

About the life path thing: I liked being around other autistic people, because they understood me and I understood them. This resulted in heavy pressure to see myself as “someone who should work with autistic children” and who was supposed to describe myself in that manner. I was very very good at that point, at describing myself exactly as my doctors described me, and acting how my doctors expected, so when they said things like that, I fucking repeated them.

Also, I was under heavy pressure from the beginning to become a psychiatrist. Because that’s what my psychiatrist saw as the ultimate in healing, was to become a psychiatrist and help other people like myself. And if I said that, he said I’d gotten better. Like literally if nothing at all changed other than me saying “I want to be a psychiatrist when I grow up” he took that as a massive sign of improvement in my mental health. If I didn’t want to become a psychiatrist or contribute to autism research in any way, this was a sign I was not making a contribution to the world at all, because this was the best contribution I could possibly make, is becoming another Temple Grandin. He said this, more or less, in writing.

I was a very passive child before I was in the psych system, I was an even more passive child after I entered the psych system, and I sure as hell was no match communication-wise for any of this at the time it was all happening. So I was not able to communicate much of anything about my own wants and desires and needs and experiences, I could just repeat what I was told to repeat, and I was excellent at doing that, and everyone else liked it when I did that so they reinforced it both deliberately and inadvertently, until it undermined my communication abilities in a very active sort of way.

But at any rate, simply the fact that I was diagnosed with schizophrenia at age 15 apparently negates the multiple, repeated, over-and-over-again diagnoses of autism both orally and in my medical records from before that. Because apparently, the only way misdiagnosis happens is in a straight line from misdiagnosis to real diagnosis. You apparently never get a real diagnosis and then get misdiagnosed and then get rediagnosed with the real thing. Even though that happens with physical non-stigmatized diagnoses all the time. But as you said, if it’s a stigmatized diagnosis or a psychiatric diagnosis all bets are off and you’re an evil self-diagnoser regardless of what actually happened.

Oh and speaking of self-diagnosis…

The year I had my really big health crash (which was some combination of adrenal insufficiency and myasthenia gravis interacting in seriously unholy ways)…

I read a Kindle book within the first few months of that health crash. It was by a veterinarian. There was a dog. The dog would start to walk up and down the halls and his legs would start dragging behind him and then he’d collapse. The dog had myasthenia gravis.

I told my doctor I’d read about this dog, who had these symptoms, and that I knew it sounded weird but was there a test he could do? He said it was not weird at all, that it was a really good guess as to what I might have, and yes there was a test. He tested me for the most common antibody of myasthenia gravis, and I tested negative. We thought that was the end of it.

The next time I heard of myasthenia gravis, I was in the hospital and my roommate had it. I was very weak (partly from myasthenia gravis) myself, and they were forcing my roommate to walk when she was almost falling over (she kept screaming “I HAVE MYASTHENIA GRAVIS PLEASE STOP THIS!” and crying hysterically, but she had enough cognitive problems that she couldn’t muster much defense against them, we were in a neuro ward and she was there mostly for disorientation from a completely different condition, she couldn’t even guess what year it was within 30 years accuracy in any direction), and then they tried to force me to walk, and punished me when I outright refused (my DPA had told me that if I walked I could fall and die so to just refuse no matter what anyone told me, and I did, and I paid the price). In fact the LNA who punished me for not walking accused me of faking, which, since I was delirious at the time and had been subject to a lot of bullying around the subject of faking, turned into a delusion that everyone in the entire hospital thought I was faking.

Then my mother – while I was still in the hospital, pretty much the same week I’d gotten transferred to another ward to escape the abusive LNA – got diagnosed with probable myasthenia gravis by the Mayo Clinic. (Which is, as far as diagnostics go, one of the top hospitals in the world.)

And I completely wigged out. I had pneumonia and was severely delirious and I was hallucinating people talking about me already, and now these (non-existent) voices said things to each other like “Myasthenia gravis is what her ROOMMATE had, now she’s saying her mom has it, soon SHE’S going to be claiming she has it, just you watch.” I was horrified when my DPA said my mom was diagnosed with it, I didn’t want her to even suggest to my doctors that I might have it, I was just completely petrified even after people convinced me that the people “talking” outside my door weren’t actually real. (The nurses told me to hit my call button any time I heard voices and they’d wheel me around to show me there was nobody there. They were truly amazing people and did everything they could to make me comfortable even when I was too paranoid to trust them at all. But the delirium did start breaking down after awhile and I stopped hearing voices – slowly, the voices just started getting more and more repetitive of the same words and phrases over and over and then faded out altogether. By the time they were gone I already knew they weren’t real anymore.)

My mom and I went through a lot of testing over the next several years.

We both tested negative for all the known antibodies for myasthenia gravis.

My mom’s doctor at the Mayo Clinic told her that this isn’t actually that unusual. Because there’s first off more than one kind of myasthenia. Myasthenia gravis is actually the term for autoimmune myasthenia. And then there’s hereditary myasthenia. And then (just to be confusing) there are hereditary forms of autoimmune myasthenia, that are just being discovered recently. So there’s like, myasthenia gravis, congenital myasthenia, and hereditary myasthenia gravis, at minimum. And even people with autoimmune myasthenia don’t always test positive for the most common antibodies, and they haven’t even found all the possible antibodies yet. So there’s all kinds of reasons that someone with myasthenia might not test positive for the antibodies. They were 99% certain my mom had myasthenia because she had such a positive response to Mestinon. And I had a pretty intense (but less spectacular than my mom’s) response to it as well, when I was put on a trial of it by my doctor to see if it might help because nothing else was helping. The effect was more subtle than for my mom (especially because I had more than one disease making me weaker than usual) but it was there and definite.

So then I had this provisional but more serious than before, “maybe myasthenia” sign, hanging over my head, five years after I’d first brought up the dog thing.

And then, I started getting really really weak. And it was getting frightening because at this point in my life, my health was supposed to be only improving. My gastroparesis and aspiration pneumonia were finally being addressed with a feeding tube. And I’d gained a lot of weight back and started getting much stronger – initially. But then after that initial burst of strength and improvement in symptoms and everything, I started getting much weaker, losing a ton of weight despite getting more calories than I strictly needed given that I wasn’t walking or anything (at the beginning of everything, I weighed 245 pounds, at my lightest I weighed about 170 – both are overweight but that much weight loss without trying is never a good sign, ever, and my doctors were worried I was losing muscle, even possibly heart muscle, long before I got below the 200 mark)…

And sometimes I was waking up so weak that I couldn’t lift my head or even wiggle my fingers even a little bit, and couldn’t stay conscious consistently. I’d wake up over and over in this state over the course of hours and just be glad I had a bipap with AutoSV mode because it was literally helping me breathe at that point. It couldn’t tell the difference between central apnea and being too weak to breathe properly. So it just activated its anti-central-apnea routine every time I woke up too weak to breathe well. And that routine involved blowing air, hard, into my lungs, rhythmically, to try to jump-start the breathing process. Which also worked really well to augment my breathing when I was breathing really weakly. Which saved my life more than once, both during those time periods and other time periods when I got too weak to get adequate oxygen on my own due to adrenal or myasthenia exacerbations. My pulmonologist even told me this was a perfectly valid use of a bipap as basically a non-invasive ventilator. And since I couldn’t even move well enough to press the button on my wrist to call for help – and I tried many times – this was all I could do was just wait it out when it got that bad.

So at this point, I was pretty sure I was going to die sometime within the next few years, and that I would never get properly diagnosed with anything until maybe someone did an autopsy and found something – maybe. But I was really well conditioned at that point to almost believe that nothing I had in the way of weakness, would ever show up on a “real” test. And I didn’t want to worry people, but I knew that every time I got sick, I got far weaker than I ought to. Because I’d known people who were at the end stage of terminal illness who had more physical energy than I sometimes did when I was in the hospital for things that clearly should not be terminal. So I knew something was very wrong, and my body was telling me I was dying, but at the same time I didn’t think anyone would ever find out what it was, so I didn’t think I could say “I’m dying” without sounding melodramatic.

Fortunately, my doctor guessed that something really bad was up, although he didn’t tell me right away. He just started ordering a lot more tests than I’d normally gotten before, and he and my pulmonologist sort of collectively pressured me to see a neurologist, which I’d been very reluctant to do because I’d had one really bad experience with a neurologist, and my current neurologist at the time had been incredibly dismissive of even the possibility I might have myasthenia (of course this neurologist was a headache specialist, not a general neurologist, so why he thought he had much right to comment on myasthenia was beyond me, but his dismissiveness still scared me).

So the first thing that happened was one of my blood tests came back severely abnormal, a cortisol test. Like as severely abnormal as possible – below the threshold where they could measure the presence of cortisol. A repeated test showed the same result. A test for ACTH also showed too little to measure. An ACTH stimulation test made me make some cortisol but not as much as they’d hoped for. Or in other words:

The end result was a diagnosis of severe secondary adrenal insufficiency (arising from the pituitary gland, not the adrenal glands, but they think my adrenal glands were not making much cortisol for so long, due to an absence of the ACTH from the pituitary to tell them to make it, that they’ve gotten sluggish or lazy or something), and an instantaneous (and lifelong) prescription for steroids.

I improved so massively on steroids that we all decided we’d figured everything out. We were about to start taking me off of Mestinon entirely when I saw the neurologist. I felt silly seeing the neurologist at that point, I told him my entire history as well as I could, as well as my mother’s, and sent him all my mom’s medical records from the Mayo clinic before I even saw him. But I told him I thought we’d figured it all out with the adrenal insufficiency and I wasn’t sure there was anything left besides that to figure out.

He wasn’t so sure.

He made a list of every possible disease he could think of that could cause my symptoms, then he made a list of tests to run.

He ran a crapload of tests, all of which came back negative, including every test that should have shown myasthenia gravis.

Except then he said he had one more test to run, just in case, but after everything else we were all sure he wouldn’t find anything.

That last test – run LAST, for reasons I don’t understand, and it’s often the last test you get for myasthenia – was called a single-fiber EMG.

It happens to be one of the best tests for myasthenia out there. Almost all people who have myasthenia test positive on it, almost all people who test positive on it have myasthenia, and people who test negative on every other myasthenia test, but who have myasthenia, generally test positive on this one.

I tested positive.

After I tested positive, my mom got tested. She tested positive too.

So we now both have absolutely definitive diagnoses of myasthenia. We still don’t definitely know what kind. I mean clearly something hereditary happened, but whether it was a hereditary autoimmune disease that happened to both attack the same part of the body, or whether it was hereditary myasthenia that is not autoimmune, is anyone’s guess. My suspicion is hereditary autoimmune but that’s because my mom’s definitely responds well to steroids, and we suspect that some of my good response to steroids is not just the adrenal insufficiency but also because steroids suppress the immune system. I am also doing a lot better after 6 months on CellCept (an immune suppressant), but there are so many other factors that we don’t know if it was the CellCept or something else. And I have too many other medical issues to do plasmaphoresis until those other medical issues are taken care of (plasmaphoresis would tell pretty quickly if it was autoimmune, in all likelihood, which is why they want to do it – they say it would create a big and instantaneous change if it was).

After years of speculation about both me and my mom, we both now have definitive myasthenia diagnoses.

And the weird thing to me is why don’t they do the single-fiber EMG first or at least early on when they start really suspecting myasthenia? Since it’s such a sensitive test, and since it shows up myasthenia when a regular EMG often doesn’t, why do they do first all the antibody tests (and then often drop the subject if you test negative, even though lots of people with myasthenia gravis test negative to the known antibodies, since we don’t know all the possible antibodies by far), and then the EMG and the like, and then only after nearly every other test is exhausted do they do the one test most likely to show if you have it in the first place? Like whose idea was that? I mean it’s not pleasant to have needles stuck in your face and your muscles zapped over and over, but I’ve had much worse in the way of invasive testing. And it’s not worse than a regular EMG in any way – so why not do a regular EMG and a single fiber EMG together instead of doing them as two separate appointments? And why save it for the last in a long string of tests? Especially when each test you test negative for, makes it less likely that they will even bother doing the next test on the list?

But anyway, that was a very long story told for an actual reason related to this post again.

Which is, I was the first person to bring up myasthenia gravis as a possible diagnosis.

I now have a diagnosis of myasthenia gravis. Right here in black and white (well, red and white, and I drew a big green box around it so you can’t miss it):

[Image description: Screenshot of my online medical chart showing most of my current diagnoses until they start running off the page. Near the bottom outlined in green is “Myasthenia gravis without exacerbation” with the date entered into the record given as 7/28/2014.]

So I’ve been diagnosed for just about exactly a year, according to that medical record. Meaning that was when it was entered into my computerized medical record as “myasthenia gravis without exacerbation”. (Those dates are just when they were last put in the computer and/or updated, not necessarily when the diagnosis happened.) But…

Six years prior to that, I came to my doctor with a story about a dog, asking if I had it. I didn’t exactly self-diagnose – I didn’t say I had it – but I did bring up the topic before anyone else did, before my mom had her own rapid health decline resulting in the Mayo clinic visits that saved her life and got her on the path to a myasthenia diagnosis among many others (several of which I either definitely share with her or am suspected to share with her, including autonomic neuropathy, small fiber sensory neuropathy, central apnea, obstructive sleep apnea, etc.), before the roommate with myasthenia gravis, before any of that.

And.

After we got a real diagnosis of adrenal insufficiency, we thought it was the cause of the myasthenia symptoms as well and almost took me off my myasthenia meds as unnecessary now that I was on steroids. Which turned out to be way the wrong move and we’re glad we didn’t do it.

But notice the pattern:

1. I suspected it because of a dog, but my suspicions were dismissed on the basis of a single, fallible test that lots of people with myasthenia test negative on.

2. After years of forgetting about it entirely, it became a strong suspicion after my mother was all but diagnosed with it herself and I responded well to Mestinon.

3. After receiving another diagnosis (adrenal insufficiency, in this case not a misdiagnosis, but that doesn’t matter) we almost dropped the matter of the myasthenia entirely.

4. After getting testing, it became very clear I had myasthenia after all, and treatment began helping symptoms that hadn’t totally gone away with the adrenal insufficiency treatment.

So again it was that back-and-forth thing: I think might have it, I probably don’t have it, I probably do have it, I probably don’t have it after all (because of another diagnosis), I definitely do have it.

And even though it’s a much more difficult diagnosis than your average broken leg or something, nobody has given me shit for the fact that doctors went back and forth and disagreed with each other about whether I had it. Nobody has called me a liar because at one point I was all but sure I had only adrenal insufficiency and not myasthenia after all. They’ve called me a liar for other reasons (there are people who, no matter how much evidence I give, including the presence of an implanted feeding tube and a port and another implant in my body at all, none of which can pretty much ever happen without there being a known and severe medical reason for them… will always call me a liar about everything medical, just because they like to do that).

But they haven’t called me a liar because I was the first person to come up with the idea of myasthenia as a possible diagnosis because of a dog book, and they haven’t called me a liar because my doctors changed their mind a lot about whether I had it, and they haven’t called me a liar because some of the tests were negative while others were positive, and they haven’t called me a liar because adrenal insufficiency almost took the place of the myasthenia diagnosis at one point, and would have definitely done so if I hadn’t had such a thorough neurologist who insisted on doing every single test he could think of until one showed something or he ran out of tests, whichever happened first. (He even went on to do more tests to rule out further problems.)

But get diagnosed, undiagnosed, and rediagnosed with a condition that’s much much harder to diagnose and test for than myasthenia, and was much more controversial in the nineties than it is now? Have to be lying. Because in the medical world, nobody ever goes from one diagnosis to another and then back to the first again. (That was sarcasm. Actually, in the medical world, it happens all the frigging time.)

Not to mention that if I were to listen to these people who say that doctors always know best, which doctors? They sometimes say to me “You don’t have any medical problems, seek psychiatric help!” I sought psychiatric help a long time ago. The first time my psychiatrist saw me he instantly thought of autism, and his testing, observation, and interviews with my family confirmed it. Oh yeah but that can’t have happened, because a later psychiatrist decided I was schizophrenic (and that I had to act schizophrenic before I could become well, and not acting schizophrenic meant being in denial, among many other pressures I was under at the time), before everyone decided I was autistic again.

Oh yeah and my previous stated desire to work with autistic children also supposedly shows that I’m not autistic. Even though, even if I had actually wanted that as a life goal, it’s an incredibly common life goal for autistic people, because especially when we have no access to the autistic community, “working with” other autistic people is often the only way we have to interact with people like ourselves. It’s also (as it was in my case) an idea often planted in our heads by professionals in our lives who think it shows a healthy desire to become just like them! And what could be psychiatrically healthier than wanting to become a psychiatrist, as far as psychiatrists are concerned? I mean really, come on. It’s not too hard to see how I was manipulated into that one.

But what do I know about any of this? I’m obviously just making it up.

Oh and that’s the other thing. If I wanted to fake things, I would do so much better than this.

By which I mean, reality is unrealistic. My story has so many fits and starts and weird places and ambiguities and confusing parts because that’s what most people’s real lives are like, especially when it comes to any kind of complex diagnostic issue. But people have an imaginary idea, of what diagnosis works like, and of what life works like in general when you’re disabled.

And if you want to successfully fake having a disability, you have to play to those stereotypes as often as you possibly can, and deviate from them as little as you possibly can. You also probably don’t want to make waves or contradict much in the way of received wisdom about your condition (you can cautiously do so if you make sure it’s only in certain select areas that other people clearly get away with all the time).

So if I was going to fake autism.

I would, first off, claim that my abilities were stable over time. I would not have all this back and forth with getting an ability halfway and losing it and getting it and losing it again. People find fluctuations in ability suspicious, always. I would not talk about fluctuations in ability – they’re well-known in actual autism literature, but not in autism stereotypes.

I would pick one set of stereotypes and stick with those stereotypes. In my case, with my particular life history, it would be easiest to go with the geeky nerdy high functioning autistic person stereotype, even though it doesn’t really fit me, at all. But it would still be the easiest probably.

I would stick to that and never do anything too “low functioning” looking, because mixing “high functioning” and “low functioning” traits is another good way to invite suspicion, even though most actual autistic people are a mix of both because HFA and LFA are stereotypes and not actual realities. (Yes, autistic people’s skills differ from each other. Yes, that’s important. No, HFA and LFA does not adequately describe how our skills differ from each other.)

As far as official diagnosis goes, if I was doing all the other stuff right, I could just say I was diagnosed at age five or something, and people wouldn’t question it. Most people online don’t question your diagnosis unless they’re pissed at you for some reason. (Which says a lot about what the diagnostic questioning is really about – power and anger, not any desire for the truth.) Or I could say I was self-diagnosed, maybe. I don’t know. I’m not really trying to fake autism and there’s only so far I can figure out this thought experiment. But I do know that whatever I claimed about my diagnosis, it would be something where it was diagnosed and it stuck. Not something where it was diagnosed and undiagnosed and rediagnosed. I might do the “I had a schizophrenia diagnosis until I was finally diagnosed properly with autism” thing or I might claim to have had no diagnosis before an autism one, there’s lots of accepted possibilities these days.

But my point is, if I did want to fake autism, I would have gone about it in a way that would actually work. My real life is far too messy and complicated, compared to the stereotypes. It would be far easier to fake autism than to live my life as it actually is, as a real autistic person, who because I am real am not “realistic” in the way a fake autistic person would be seen as. I am certain there are fake autistic people running around right now that nobody suspects because most people faking something like this are blending in, not standing out. I stand out too much. I’m all wrong as a faker.

I actually had someone tell me my autism was “not realistic”.

And I was like “I don’t have to be realistic, I’m real.”

And that was before I’d heard the phrase “Reality is unrealistic,” or the Granny Weatherwax quote, ““Things that try to look like things often do look more like things than things.” I just knew, instinctively, that “realistic” to this person was a stage convention, a stereotype, and that I was not “realistic” precisely because I was real. And real life is messy and complicated and never fits into a tidy box and only rarely follows the conventional ‘narrative‘ of whatever type of person you actually are. (1)

It’s funny now that I think of it… it feels slightly insulting to be accused of faking autism, when if I really wanted to fake autism, nobody would ever have accused me of faking it because I would do it so much better than this. I know so many ways I could fake autism and never get caught. So it’s sort of like, “Don’t you think I could do a better job faking it than this, if that’s really what I wanted to be doing?” I mean seriously, if I were faking it, the life path I’ve taken would be the worst possible way to get away with faking something, ever.

And it’s also kind of funny to be told to get psychiatric help when psychiatric help is what got me my autism diagnosis and ruled out the things people online like to accuse me of. And it’s not like I shopped around for psychiatrists, either – the guy who diagnosed me was randomly assigned to me because he was on duty when I was admitted to a mental institution for suicidal behavior. It’s not like my family was even looking for an autism diagnosis, we were just trying to figure out WTF was going wrong with me in general. I was 14 when we first met. He remained my main psychiatrist until he retired in my twenties. So… yeah.

Real life is messy. Real life is usually highly unrealistic by most standards. People who can’t see that are no good at seeing anything at all. And if I wanted to fake autism I’d be doing it so much better. :-P

And as for self-diagnosis? One thing I often point out is that even though I was officially diagnosed, my diagnosis meant nothing to me until I went through the same research and soul-searching that people go through when they self-diagnose. So why is it okay for me to have gained information about myself that way, because I’m officially diagnosed, but it’s not okay for self-diagnosed people to have gained information about themselves that exact same way? Makes no sense to me. Count me in as an officially diagnosed person who thinks self-diagnosis is at least as accurate as official diagnosis, and even when it’s not accurate, it’s not like it’s massively hurting loads of people if you turn out to be wrong about thinking you might have been autistic (or whatever other condition you’re “not supposed to self-diagnose”).

(1) I still don’t know if I’m using the word narrative right. And I feel awkward and vaguely pretentious using it in this context at all. But I don’t know a better word.