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

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

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

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

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

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

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

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

I find it very interesting:

I have a sprained finger that is permanently crooked.

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

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

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

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

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