Autobiography of Anonymous

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Awhile back, an autistic woman sent me her autobiography. She said I was one of the few people who responded to it. She’s spent years being labeled a psychopath. I offered to put her story on autistics.org. She just finally, after several weeks, agreed and sent me an edited form that’s more anonymous. So here it is:

Autobiography of Anonymous

About Mel Baggs

Hufflepuff. Came from the redwoods. Crochet or otherwise create constantly and compulsively. Write poetry and paint when I can. Physically and cognitively disabled. Anything you hear in the media or gossip is likely to be oversimplified at best and wildly inaccurate at worst, the only way to get to know me is to actually know me. I'm not really part of any online faction or another, even ones that claim me as a member. The thing in the world most important to me is having love and compassion for other people, although I don't always measure up to my own standards there by a longshot. And individual specific actions and situations and contexts matter a lot more to me than broadly-spoken abstract words and ideas about a topic. My father died a couple years ago and that has changed my life a lot in ways that are still evolving, but I wear a lot of his clothes and hats every day since he died and have shown no sign of stopping soon.

20 responses »

  1. Even after diagnosis, I too sometimes feel “left to rot”. So many say they don’t see anything wrong with me…to my face and to onlookers but in hushed tones, they gossip about my “bad behavior” as well. They seem dead set to not want to let me use “my label” it seems. I can’t help but be invisible because of how far I’ve come without anything.

    In fact, invisible describes my life better than a lot of things. I’ve slipped through many a crack in terms of bureacratic processing. No one tells me things. The system often relies on the gossip network to get things done or the small meeting + gossip network and that’s often when it happens.

    I can’t believe the author is a psychopath. A psychopath to me describes some of the truly, more manipulative scarier people I’ve met and this writer does not scare me…and over time, I’ve become more keen to avoid the manipulative types.

    Back to invisibility…I have never been photographed more than once for a school yearbook. I have never seen myself appear in any school assembly “slide shows”. When I won contests, the second runner up was interviewed for the school paper. I was a kind of “off limits” person who was not to be touched or talked to because I would not respond how they would want me to. I didn’t do things want me to as I tried to belong to certain groups…those things that make cliques work. Only the most accepting groups had accepted me…to a point.

    So basically, I can only speak for myself here in terms of my reaction and how I relate. I sometimes feel guilty for constantly relating my own similar experiences thinking I should write about others or more of a “group” but then I’ve never really felt a sense of it enough to write that way. I could write about a few autistics I know. I can’t always attend to them but we have very cordial and pleasant relationships that it seems neither of us typically get. For that reason, I’ve more recently, since I’ve been going to adult support meetings, found more of a “group” who doesn’t only understand me but seems to actually want to be around me which I find unusual. I don’t know how to deal with it sometimes. I have dealt with it somewhat online. I am often a bit scared but in any case, while I don’t expect a friend to be someone I “fall back on” and would not expect the same per se in return. I at least feel some underlying emotional reciporactive support or understanding via the shared experience. I’ve got a lot of catching up by the way in terms of reading here. It’s been getting harder to read as I’ve been burning out at a job that seems to be going ok at the moment. Thanks for the story, as much as I was able to get, I appreciated as I too relate to a lot of that slipping through…

  2. JBJr: “Instead of just putting her story here and leaving her to rot some more, why don’t you tell her to look up Generation Rescue?”

    Because it would do absolutely no good.

    As if that isn’t obvious!

  3. Mr Best,

    If (hypothetically, since it’s not my decision or yours), anonymous were chelated, and didn’t become normal, would you take that as evidence that chelation didn’t cure autism? Or would you regard failure to respond to chelation as evidence that she was not really autistic? In short, is your claim falsifiable to any degree?

    Also, since you seem to be of the view that parents can and should exercise control over the bodies of their adult children with autism, and her parents would be unlikely to approve medical treatment of this sort (since they’d regard it as encouraging her delusion), can you honestly support chelation?

  4. I know who ‘anonymous’ is (and confidentiality is maintained); I too have a copy of her biog (which I really wasn’t sure what to do with, but knew that it was definitely something that needed to be seen and read by people, and it is not a nice situation she’s been in. I know the town, too, and it really is that bad there. Finland is not much better (if it’s any better at all), but at least neither the UK or Finland has GR stuff going on (which is good, IMHO).

    In my part of Finland, we’re trying to do something about the issue that Ann O’Nymous’ biography is filled with – the issue of nothing for those who get the diagnosis – by having a peer-support group once a month, and having local officials come and talk to us about what does exist and then be quizzed about why appropriate stuff doesn’t (in terms of services). Finland is well-corrupt at national and local political levels, and so some of this could get a bit uncomfortable for these dignitories… but they are there to serve, so that’s what we expect them to do.

  5. Can you send feedback to her? Because reading that felt like a punch in the stomach – not to me, but for a friend. The description of being labelled as having a personality disorder, of being abused by the family, and ‘left to rot’ by servies that should be helping, fits her to a T. Her situation is perhaps not quite as bad – she is barely holding down a job, and so is classed as ‘functional’ by society, but everything else sounds so familiar. My friend is in her early 20s – it sickens me that nothing seems to have changed in twenty years.

    I don’t want to leave her to rot – but without some practical help from outside, there is only so much that a small group of friends can do. I’m running out of the mental resources to try and help her (this is no comment on her, but a comment on me). This isn’t lack of love or care, but growing despair that things are not going to get any better.

    I hope her life improves; I hope that my friend’s life does. I wish I could offer something more than hope.

  6. Is there no way to help this woman get the help she chooses? Could UK readers petition a psychiatrist to treat her, or something? Not that I think the psych system is all that great, but… she did want to see one and that should be her choice.

    Just an idea… I’m sure it’s a lot more complicated than that…

  7. n – my friend was seen by a pschiatrist once and bascially told to piss off (I’ve seen the letter they sent her, and it boils down to ‘this person has a personality disorder. this is nothing to do with me’). The NAS page on getting a diagnosis as an adult is similarly gloomy; http://www.nas.org.uk/nas/jsp/polopoly.jsp?d=255&a=3341

    I’m not trying to be negative – if people do have good ideas I’d really love to hear him. But the NHS is chronically underfunded and politically messed about with, and people with mental health problems are easy targets.

  8. Personality disorder was the same dustbin diagnosis my dad recieved, nonetheless he preferred that to the idea of having a “mental illness” can’t see why considering what is said about “personality disorders” these days, but then it has been more than twenty years since he died.

    The story is recognisable enough to have happened to so many. Getting a diagnosis is very much a matter of luck and getting one without parental corroboration must be difficult so it surprises me that I managed.

    However getting a diagnosis is not a magic solution either or a point at which people will be jumping over themselves to help you out.

  9. Completely irrelevant, but it annoys me how that NAS site redefines ‘imagination’ to mean what they want it to mean so they don’t have to admit that the idea of autistics lacking imagination is just ridiculous.

  10. Kick in the stomach indeed. I suspect I would have been there myself but for the luck of the draw good fortune of support from family and a few friends who were willing to put up with my oddities and quirks, so I could then manage going to a geeky university and then getting a geeky job.

  11. Hang on now the NAS would not have changed the definition of imagination were it not for the like of me sending ballistic missiles into the heart of autism – great quote that why should the devil have all the best quotes :)

    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.

  12. Zephyr: “Isn’t there anything that can be done for this woman?”

    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.

  13. M, I meant, Anonymous woman. Why is it not possible to for a lot of (especially British) people (maybe Autism Hub participants?) to somehow petition someone to help her?

  14. I asked Jesus to send someone to help you. He is the Great Physician. I have seen many similar experiences with “the system” failing people who need them. They just don’t know everything. Because they think they do, it is hard for them to recognize differences. Don’t give up. Our thought processes affect the way we respond to our world. Try to accept that GOD has some some reason for your being in this position. Try to give up struggling against these people who are frustrating you. Ask Jesus to help you find a way to cope. Little by little, I believe you will see small improvements in your ability to handle your situation. Search for Radio Bible Class, Mart DeHaan, to study online.
    My prayers are with you.

  15. It’s unfortunate that the term “personality disorder” (which the author mentions has been applied to her) has been turned (or was originally) into such a dehumanizing, insulting phrase.
    I speak with people all the time at the crisis line who could be diagnosed with Borderline Personality Disorder, although we don’t deal in diagnoses. I hear this term used as an insult, and I have heard it given as a punishment by a jerk psychiatrist I work with- as in, she didn’t agree with him about a medication, so he told her she is “borderline” (but didn’t write it in her chart, so he wasn’t to be held accountable).

    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!

  16. I’m coming in on the discussion late because I just discovered anonymous’ autobiography when it was linked to in a discussion group. I identified so much with so many of anonymous’ experiences of homelessness and inability to get appropriate services. I am in a better position in my life and pray that anonymous can get the help she needs and get into a better position in her life as well.

    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.”

  17. Rachel: Didn’t see your comment earlier. (Given when it happened, was probably just approving comments without looking closely.)

    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???).

  18. I’m afraid it may be black and white thinking coming into the picture again… this is a problem sometimes when you think very concretely. Say you have had a decent psychologist; and you think concretely; and that psychologist becomes the model for any mental concept of psychologist you ever have afterward. No wonder you would think it absurd that a psychologist could be incompetent or abusive, if you had never experienced it and had gotten a good experience to use as a model. But really, the solution to that is just to add more models, to get a realistic picture. You could have an ineffective psychologist, who just isn’t good at what he does. You could have one who’s on a power trip, or one who believes in a pill for everything, or yet another one who’s competent but simply doesn’t have a good personality match with you. Saying they’re all bad isn’t accurate any more than saying they’re all good, though; people aren’t all bad or all good in the first place, and there are decent people in the psychology profession. You just can’t depend on dealing only with the good ones.

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