The only official personality disorder label I’ve gotten was actually one that is not particularly stigmatized: schizoid personality disorder. Which was among the initial impressions of a psychologist I was sent to, and a psychiatrist, before I was officially diagnosed with autism. Schizoid personality disorder is supposed to mean someone who is solitary and unemotional, and I certainly looked that way to them regardless of how untrue it was.

There was a doctor for an insurance company who wanted to get me re-labeled borderline, and that was specifically so that he could cut off funding. He had, however, never actually met me, and that label never made it onto paper. In that case it was a very specific purpose he had in mind. And that’s how I saw people labeled borderline in the system. It was used when staff didn’t like you very much or you were seen as a troublemaker. But I somehow never got that label even when I was seen as a troublemaker. (I even once chickened out on a suicide attempt — I wanted to get away from my shrink but didn’t really want to die, and the ambivalence saved me — and my shrink said “Oh don’t even try to act like a borderline, we all know you’re not one so it won’t work.”) It was used as an insult, not an actual diagnosis.

But I have trouble believing in most psychiatric labels as actual scientific categories of human beings. Personality disorders doubly so. It seems so much like glorified guesswork that the entire field scares me.

Sparrow: I saw those responses you’re talking about and they infuriated me. I am getting really tired of autistic people who have little to no experience with the nasty end of psychiatry, who end up worshipping psychiatry from a position of such privilege that they can’t see or even imagine the damage they do with their little diagnostic parlor games on the Internet. I doubt that a lot of people (at least those who hadn’t identified with the shrinks to survive) who’d actually been through the system in the same ways that you or I or Anonymous have, would have any trouble seeing a whole lot of reality in Anonymous’s story. Anonymous is in the position that I bet the majority of adults who have gone undiagnosed and haven’t managed to “function in society” are in, and I don’t even want to know the number dead because of things like this. And yet people are content to sit around trying to tally up stereotypes to diagnose or undiagnose her over the Internet based on whether she’s sat there and delineated which autistic traits she actually has or not (are we all required to submit a full biography now before we are to be taken seriously???).

I felt distressed at some of the reactions other autistic people had to anonymous’ story (and because of my strong identification with anonymous through reading her story, I believe I personalized many of those reactions against her as if they were actually reactions against me.)

I decided to search to see if you, Amanda, had written anything about anonymous’ autobiography. I have come to view you as a voice of reason and inclusion and those are two things I needed to counteract my distress.

While you have said little on this topic, the responses to your post have said much and, overall, it has been a helpful experience to come here and read these words.

It is very important to help anonymous get the help she needs. It is also very important to publish stories like hers, especially connected with the Asperger’s label. As difficult as it is for an autistic adult to get services, I think it’s becoming doubly-difficult for an adult with Asperger’s to get services because we (meaning the media, the parents, and many in the Aspie community) are building a construct called “Asperger’s Syndrome Adult” that looks like Bill Gates and Stephen Spielberg and Albert Einstein and Gary Numan and does not look like anonymous, or Dawn Prince-Hughes (especially in her Twenties) or me.

I desperately want anonymous to get the help she needs. I am also desperately grateful to her for doing her part to remind the world that “Asperger’s Syndrome” does not mean “Geek Syndrome” or more specifically does not mean “Something we call a syndrome but really mean to say by it that the person will be a fabulously wealthy and successful celebrity who deserves our envy and needs no assistance.”

What these terms really (or should) refer to is when a person has a pattern of relating to othe people which causes them problems. Not which causes society problems, or Ghandi would have been personality disordered (which for all I know, somebody called him). When a person is in the habit of relating to people in a certain way, and is profoundly unhappy as a result of how this causes their relationships to be, it could be called a personality disorder (though I wish we would just ditch that and think of a new term). This does not mean the person is flawed, it just means that we all have little issues in the way we relate to people, or schemas for how we interpret people’s actions. For someone with a “personality disorder,” these schemas are simply more extreme and more of a problem than they are for others.

My interpersonal problem is that I tend to be a bit avoidant or socially phobic. This means my “schema” is that people are laughing at me, even when they aren’t. I say this to emphasize that I consider myself part of a spectrum. While my social phobia is not severe enough to be a disorder, I have at one time or another been diagnosable as depressed or having generalized anxiety disorder. I was lucky enough to see a counselor that did not focus on the thin line between “normal” and “mentally ill” and just brainstormed with me ways I could feel better.

So, I have no idea whether the author of this autobiography actually does have issues when relating to people, or this was used against her as an insult by her doctors. Either way, I commend her for rejecting the ugly, dehumanizing aspect of this label and (again) on behalf of people working in mental health I apologize for the way she was treated.

I realize this post is late, I’m kind of going through all the posts one by one. But if anyone sees this, I would love feedback similar to the suicide hotline post about what your experiences have been with these kinds of labels, how they were explained to you, or even what you think of when you hear “borderline” or even “psychopath.”

Incidentally, the term psychopath originally referred to someone who can’t empathize with the feelings of others, usually a serial killer or criminal. I’m glad to note that this term no longer appears in the DSM, as I personally don’t believe there ARE people who can’t empathize with the feelings of others, at least not people who are “born that way.” What a horrible concept, and what a horrible term to have slapped on you!

Knowing the place she is living, I’d say there’s nothing apart from the wholesale implementation of aversive-based reinforcement schedules on psychiatric staff. And that will never happen.

It is amusing to attend a day of lectures and practically every speaker has a different definition of the third component of the triad, but what that represents is that the old definitions are breaking down, and hopefully sensory differences will be incorporated eventually as they actually were right at the beginning.

Old ideas die hard however and there are still dictionaries that define autism in Bleulers terms. It takes a long time for changes to get through to the “coal face” of clinicians which explains why the autism diagnosis although available in the 50’s and the 60’s was so rarely applied.