Whose Planet Is It Anyway?

Monday, April 17, 2006

Prejudice (Undiagnosed)

Barbarian dreams of book-burning

Ballastexistenz, who collects books by autistic authors, recently commented on a book entitled The Feeling's Unmutual, which has the subtitle Growing Up With Asperger Syndrome (Undiagnosed). She wrote that she liked the book because it reflected the author's genuine feelings (albeit of confusion and self-loathing) rather than being "doctored to the stereotypes."

I have great respect for Ballastexistenz (and if she ever writes a book, I'll be first in line to buy it), but I have to differ with her view of autie-biographies in general. I find the whole genre patronizing and exploitative, whether or not the stereotypes are exaggerated. As I see it, there's not much difference between autie-biographies and, looking back a century or so, the abominable genre of poetry and short stories written in dialect by African-American authors who described the humble joys of their cotton-pickin' lives. Perhaps the authors of those works were indeed happy with their lives (although I doubt it) but the very fact of their publication reinforced the stereotypes, whether or not that was the authors' intent.

I followed this link from the Ballastexistenz site to an online bookstore that sells The Feeling's Unmutual. One of the reviewers on that site wrote that the author's

"fascinating and compulsively readable book offers a powerful insight into fears and horrors more chilling than anything portrayed in fiction, and into his courage in coping with them."

Urk. Bleah. What an image for the consumption of the unwashed masses—a poor pitiful autistic sufferer coping heroically with the fearsome, horrible, and chilling contents of his disordered thoughts. No doubt many of the readers will come away feeling charitably inspired to make generous donations to CAN and NAAR's eugenic abortion research in order to save all future autistics from the awful pain of existing.

You want fears and horrors more chilling than anything portrayed in fiction? Try discovering that you're part of a minority group targeted for an international genocide, as described by elmindreda on her blog. She writes:

"It is a feeling that I find very difficult to convey to most people, since they cannot for example visit the websites of organisations that explain what a terrible burden people like them are to families and society in general, but that there is hope that doctors will soon be able to prevent more people like them from being born."

Again, I don't intend any criticism of Ballastexistenz for reading or recommending The Feeling's Unmutual. However, I lack both the patience and the intestinal fortitude to slog through too much of that sort of stuff. Until recently, I had one book by an autistic author on my bookshelf, Temple Grandin's Thinking in Pictures, which was a gift from my stepmother. When I found out Grandin was in favor of eugenics to remove nonverbal autistics from the human gene pool, I tossed her book into a box in my basement. The only reason it didn't go straight in the trash is because I was raised to believe that people who destroy books are barbarians.

But I'm starting to have second thoughts about that after seeing the vast amount of anti-autistic propaganda being churned out by the mass media. I have to confess, I would not be at all upset to see an enormous bonfire containing almost every book that was ever printed about autism, with the DSM-IV used as kindling. I'm having barbarian dreams of book-burning.

And when I see a book with a subtitle like Growing Up With Asperger Syndrome (Undiagnosed), I just have to wonder why so many aspies are meekly surrendering to society's negative labels. Almost all of us over age 30 grew up undiagnosed, for the simple reason that Asperger Syndrome didn't exist before the psychologists put it into the DSM-IV in 1994. There were other names for us—nerds, geeks, bookworms—which weren't particularly nice either, but at least we could recognize the bullying for what it was. Many of us eventually found careers that suited our interests and were accepted by society as healthy and intelligent people.

Now that the psychologists have, in effect, deprived millions of us of our civil rights by fiat, there are far too many aspies who lack any semblance of self-respect or willingness to question authority. They are obediently sewing that scarlet A, that yellow star, onto their sackcloth and ashes while they go about loudly bewailing their youthful lack of understanding of their disorders and deficits. Frankly, it makes me sick.

This is what I have to say to autistics who think of themselves as courageously coping sufferers who grew up with Asperger Syndrome (undiagnosed): I may not have the credentials of the so-called psychological experts, but I damn sure know how to diagnose prejudice when I see it.

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  • I wasn't denying the problems of the genre, when I recommended those books. I was saying that for books of that genre (which is typically not one of my favorites either), they're pretty good.

    Whoever found that book to provide horrifying insights and so forth, it seems like they read a different book. The book I read seemed to be just about a life similar to a lot of autistic people I've known. It wasn't about how pathetic he was, or any of the other things people read into it. It was just about how he was.

    The problem I have with autiebiographies, isn't that they exist. It's what use they're put to by others. Which, yes, is exploitative, and in turn shapes how most people write their autiebiographies. (I've read dozens, and most of them read "Here's me. Here's how defective I am. That's all for now. Goodbye." That's not how either one of these two struck me.)

    Of course, I could have missed something. I could have missed some signal in his writing that was supposed to show how pathetic or defective he was. I just didn't see it when I read it. At all.

    The fact that he hated himself for awhile, is standard for a lot of autistic people in the situation he was in. I don't know what else he was supposed to do with it when he wrote abou that time period, hide it? My own standard for whether I tolerate self-hatred in a book by an autistic person, is whether it's framed as self-hatred (i.e. an undesirable thing), or whether it's framed as the natural way to feel if you're autistic.

    Your viewpoint and mine, though, on autiebiographies, is probably closer than you think it is.

    In my case, though, I do read them (as in, nearly all of the ones that exist, I collect them, I've got about 90 books by autistic people at the moment), and I do sometimes recommend them as what they are. One of the best functions I know of, for autiebiographies, is that a lot of autistic people find out they're autistic by reading them. I wish the genre were different, and I hate many things about it, but however flawed it is, these are autistic people who write within it and they write for a whole lot of reasons.

    Unfortunately, one of the more common reasons is being told "You should write a book!" too often by parents, even if you barely understand what you want to write about.

    Another common reason is, "Hey, this is what our lives are like. You people don't know it. You have no idea. So here's a book I'm writing." I once saw a book like that, and then saw the foreword and the afterword by an esteemed "autism expert" that ripped all that work she'd done to shreds, and it pissed me off.

    Donna Williams's first reason was, "Here, I'm going to dump this manuscript on a doctor's desk and burn it when he's done with it... hey, why do you want to publish this???"

    Some people undoubtedly try to make money or prestige off it, although that probably rarely works since there's so many people writing them these days.

    So there's a number of reasons people write them, and a whole lot of ways people write them.

    When I read them, I feel like I've met and gotten to know someone, someone I have something in common with, and that's not something I can do easily in person.

    I do hope that eventually there will be more political books out by auties (autistics.org is planning on that) instead of the more commonly exploitative stuff controlled by what non-autistic people want out of us. But at the moment I can count all of those on one... er... finger, and that person didn't even openly write it as autistic.

    All your points are valid, though. I just don't think it means that Will Hadcroft wrote a book about how pathetic and defective he is or something, because he didn't. (If you want that, try Embracing the Sky, which additionally rails against all anti-curebies about how out of touch with reality we are.)

    By Blogger ballastexistenz, at 1:35 PM  

  • Ballastexistenz wrote:

    "The problem I have with autiebiographies, isn't that they exist. It's what use they're put to by others."

    Yes, if we didn't have such an exploitative and prejudiced culture, a book by an autistic writer would just be seen as a book, without anything awful being read into it.

    And I don't have any particular dislike for Will Hadcroft as a human being, either. I don't know if he sees himself as pathetic or not. But what irritates me about such books and their authors is that they are obviously going to be used (by the foreword writer, the book jacket writer, other people associated with the publisher, reviewers, etc.) to spread prejudicial stereotypes, but the authors go ahead and sign publishing contracts anyway.

    Of course you're right that the major publishing houses wouldn't have much interest in printing an openly political book by an autistic civil rights activist. There's far more money to be made in pandering to the stereotypes. All the same, that's not an excuse for autistic writers to allow themselves to be exploited. Instead of prostituting themselves for the small amount of money they would get from a mainstream book contract, they should publish their works on the Internet instead, or (if they can afford it) have their books printed by a vanity publisher and do their own promotion. (And it would be very excellent if autistics.org got into the book publishing business!!)

    I noticed that a band called the Raventones is going on tour with "The Neurodiversity Show." I'm sure they won't make as much money as they would if their views were less controversial, but they're standing up for what they believe is right.

    By Blogger abfh, at 2:49 PM  

  • Perhaps some autistic authors publish their works -- even knowing the possibility for some degree of exploitation -- in the belief that they are in fact taking a reasonable risk.

    Prejudice and exploitation exist, but I don't think the answer to countering prejudice is silencing of people's real thoughts, feelings, and experiences (not that you're saying exactly this, but I'll ask another question about that later).

    I know that if I came upon a book by an autistic author and this book happened to have an unfortunate "foreword" and / or cover design, that would bother me but it wouldn't compel me to ignore the words of the person within. In a sense, it would be rather like finding the secret code embedded in the mess. If that makes any sense.

    I know that I would find writing and publishing a book to be rather uncomfortable -- I am actually constantly torn between really wanting to write everything on the web under my real name (since I'm not ashamed of myself) and realizing that that might draw unwanted attention and could affect not just my privacy, but my family's privacy.

    I already feel somewhat vulnerable writing so much about my real life online even under a pseudonym -- I didn't realize how hard it was before I tried it myself, but now I maintain a certain degree of awed respect for people who do come forth with their real lives attached to their real names.

    If someone is willing to write a book -- a static representation of their impressions of their life up to a particular point -- and attach THAT to their real name, I don't like to assume that they are necessarily too naive to realize the possible negative ramifications of this. It could be that they have simply determined that even if it doesn't come out completely right, they've got to say something.

    There are quite a few things that could contribute to a book's "not coming out completely right". I know that dealing with logistics and complex interpersonal transactions can be difficult for many people, perhaps autistics especially so (different wiring, different referential context for such transactions).

    Hence, I imagine that going through the publishing process (especially for a first-time author) could lead to some degree of information-loss and intention-loss due to the machinations of middlemen (editors, etc.).

    But I understand your point about working more toward publishing independently and making extensive use of the Internet. This sort of thing does need to be stated, since it is entirely plausible that some people who are compelled to share their experiences simply did not think of doing anything other than "writing a book".

    Is your main problem with "autiebiographies" not the books themselves or the writing of the books, but the manner in which they are published and promoted?

    By Blogger Zilari, at 11:31 PM  

  • Zilari, it's not just the books, or the writing of the books, or the manner in which they are published and promoted, but the interaction of all of these factors. As Ballastexistenz pointed out, the popular stereotypes often shape not only how these books are promoted, but also how they are written, and what the authors think of themselves. It's a vicious cycle.

    In many ways, it's similar to the popular description of autism as "devastating." The pro-cure groups started using that word to get attention and donations, and then the mass media picked up on it, and now many parents who are interviewed about their child's diagnosis say they are devastated, just because that word has become so closely associated with autism in the popular consciousness. (This is going to be the subject of my next post.)

    As for your question about whether people should silence their real thoughts and feelings, I have to say "it depends." How a person's thoughts and feelings should be expressed depends on the social context. Every day, we make decisions about what is polite or prudent to say under a certain set of circumstances. It's never possible to say exactly what we think and feel at all times.

    And I think autistics and others who belong to oppressed minority groups need to be aware that anything negative they say about themselves is very likely to be used against them and against their people. I'm not suggesting that we should all paint happy smiles on our faces and pretend life is peachy, but we do need to make an effort to stay "on message" when communicating with the public. Anyone who feels defective or disordered can (and should) talk about it on Yahoo lists or other less visible venues.

    I expect there are some small publishing houses that allow an author to have more control over the book jacket, the marketing, etc., than a large publisher would allow. A literary agent can advise an author about that. It's not necessarily a choice between prostituting one's work and staying unpublished forever, but minority authors need to do their "due diligence" in choosing a suitable publisher.

    By Blogger abfh, at 9:23 AM  

  • Now that the psychologists have, in effect, deprived millions of us of our civil rights by fiat, there are far too many aspies who lack any semblance of self-respect or willingness to question authority. They are obediently sewing that scarlet A, that yellow star, onto their sackcloth and ashes while they go about loudly bewailing their youthful lack of understanding of their disorders and deficits. Frankly, it makes me sick.

    Quite a word picture...works on SO many levels.

    I don't trust the practioners of modern voodoo. Ninety-nine and 44/100ths of us are "abnormal" in some way. The 56/100ths left are psychiatrists. Somethings up, ya know?

    Although I visited autistics.org for 9 years...I never really understood it until reading "gettingthetruthout".

    I'm glad to be on this side of the fence. I and Ben are so much happier.

    I enjoy your blog.

    By Blogger Usethebrains Godgiveyou, at 9:28 AM  

  • Thanks, r.b. -- I enjoy your blog too, and I look forward to reading more from you!

    By Blogger abfh, at 2:31 PM  

  • Has autistics.org even been around for 9 years? I thought it started in 1998 at the earliest.

    Regarding the expression of self-hatred and negative stuff, I think it depends on how you frame it. The best stuff (which is not most autiebiographies, including not the two I mentioned) puts all that in a political/social context. The worst stuff makes it out to be not only inevitable but correct, and then goes on to try to justify it.

    Even Frederick Douglass was afraid to write his autobiography at one point. He was afraid it would be dissected by white do-gooders and used for their own purposes, the way it had been when he'd told it to audiences. Even his white "friends" didn't let him speak for himself for a long time.

    I have a friend who's autistic, and who did write most of her autobiography, but who has never sought to have it published. She said if she does have it published, she's going to have to make sure to use a pseudonym and not connect it to autism, because otherwise she, also, will have her life dissected and put to the use of people in power.

    But I've also seen political autobiography, and I've seen it done well. I just haven't seen that in the autiebiographies much.

    To quote Cal Montgomery: "If I ever consented to write an autobiography, the various people who keep pestering me to do so would not, I think, like it." and "I wanted to make them see that my story isn't a happy little tale of someone overcoming personal adversity, but a morality story in which people just like them had done something wrong, or failed to do something right, and that I had been denied important chances as a result."

    Both of those are true of any autobiography I'm likely to write -- and I'm not that likely to write one. (If I had a nickel for every time someone asked me to, though, I would probably have more money than the royalties from a book would give me.)

    By Blogger ballastexistenz, at 3:33 PM  

  • I have just been reading your blog, its really interesting. I have read some books by Austistic people, others by parents/Drs etc
    Pretending to Be Normal by Liane Holliday Wiley (autobiog)
    The Hidden Child by Jeanne Simons (form of therapy Linwood School Method)
    Autism by Florica Stone (parents account of her son)
    Personally I think everyone is different no two people are the same no matter what their diagnosis if any might be.

    By Blogger Low Flying Angel, at 12:54 PM  

  • Hi,

    Just doing my monthly search on the internet to see how my books are fairing, and came across this blog, which makes very interesting reading. Your reasons for not wanting to read the autobiographies of those imbued with autistic traits are personal and I respect them. However I would like to clear up one or two things about “The Feeling’s Unmutual”.

    1. My motive for writing the book.

    I have been very aware throughout my life that what I am thinking and feeling is not always what I am conveying to other people. I misunderstand them, I fail to read the subtle nuances of face expression and body language correctly. I also feel misunderstood. Both counts lead to frustration.

    So writing an autobiography of sorts was always an ambition, to be able to say to those who grew up with me, and even to members of my own family, “This is me. This is what’s going on in my head. This is how I feel. This is why I react the way I do.” And for the most part I succeeded. My workmates have all enjoyed reading it, my friends have a better understanding of what makes me tick, and members of my family (one in particular) now have a clearer comprehension of what drives my obsessive thinking and behaviour.

    In addition to the above, it has been an ambition of mine to write and be published. “The Feeling’s Unmutual” alongside “Anne Droyd and Century Lodge” have been a dream come true, and while they haven’t taken the book charts by storm, they have touched the people who have read them, and in some cases moved them to make contact. All of this is very gratifying.

    2. Why it is subtitled “Growing Up with Asperger Syndrome (Undiagnosed)”.

    I would have been more than happy just to call it “The Feeling’s Unmutual”. The title is a reference to “The Prisoner”, a 1960s television series in which a man is held against his will on a beautiful island village. There are no names, only numbers. The village chairman is Number Two, while the Prisoner himself is Number Six. But who is Number One, the unseen ruler of the world? Throughout the series, the various characters who take the office of Number Two try all manner of persuasion to break the Prisoner’s personal integrity, but he is determined not to conform. In my twenties I especially identified with the character, and when in the episode “A Change of Mind” he was branded “unmutual” by the community, I felt an affinity with him.

    Since part of my book’s appeal is my tendency to fixate on certain TV programmes, I thought it appropriate to title it “The Feeling’s Unmutual” (an alternative title, again inspired by “The Prisoner”, was “A Fool and Not a Rat”, but in the end I thought it too ambiguous).

    I noticed that all of Jessica Kingsley’s books have a main title and then a subtitle, and that the subtitle kind of pigeon holes the market for the book. So I put “Growing Up with Asperger Syndrome” beneath the main title. Then it occurred to me that should the book be a resounding success, one of the obvious questions from media types would be, ‘So when did you get your diagnosis?’

    The nearest Asperger unit to me is in Liverpool, and they charge £2000 for an outside referral. Since I do not have that kind of money to throw around, I remain to this day undiagnosed by an expert in the field. I came to realise that I have Asperger syndrome in 2003, when a series of coincidences pointed me in that direction. I had always sensed that something was “wrong”. In the space of a couple of months I read an article which mentioned AS, heard a rock star say that he’d got a mild form of it, and then saw Luke Jackson’s programme “My Family & Autism” on BBC Two. Convinced AS was the name I should put to my condition, I researched it further.

    I worried that my lack of a diagnosis would be a problem for Jessica Kingsley. But after she had read my manuscript she said there was no doubt in her mind. Apparently even the way I arranged the material had the hallmarks of the Aspie. Even so, in a fit of paranoia, I amended the subtitle to “(Undiagnosed)”.

    3. John Christopher’s endorsement.

    The quote on the back cover blurb that says my experiences are “fears and horrors more chilling than anything portrayed in fiction” was not written by me. This was the conclusion of writer John Christopher, author of children’s sci-fi adventure “The Tripods Trilogy” (you might remember the BBC television adaptation of the 1980s). I had been asked by Jessica Kingsley to approach some of my boyhood heroes to see if they would endorse my book. One who did was Colin Baker, the Sixth Doctor Who, and the other was John Christopher. I nearly burst into tears when they came through. After twenty years of obsessing about their creations and using them to help me get through this crazy world, they now endorsed my story with such warmth and enthusiasm. I have since met and chatted with both gentlemen (drinking tea in the home of the latter. Wow!).

    I respect your reasons for not wanting to read autobiographies of the autistic. I fully understand where you are coming from. But I hope I’ve managed to clear up one or two misconceptions about my own story.

    You know, writing “The Feeling’s Unmutual” was very therapeutic. It helped me kiss goodbye a few things that had been dogging me for years. I also came to appreciate the context in which certain things had happened, and as a result, the reappraisal helped me move on. Regardless of whether or not you intend to publish, I would recommend writing an autobiographical account (and raiding the family photos!), just as a personal exercise.

    Thanks for reading this.


    By Anonymous Anonymous, at 4:12 PM  

  • Hi Will. I appreciate your leaving a comment to clear up where you were coming from with the book.

    My dad (who is very Aspie) is also a big fan of The Prisoner and has the whole collection of episodes.

    By Blogger abfh, at 5:15 PM  

  • I wonder if your dad, like me, awaits the remake of "The Prisoner" due next year? They say Christopher Eccleston will be playing Number Six and that The Village will be represented by exotic locations from around the world - oh, and the ending will make sense too.

    Not sure if it will be the same show, really. The new "Doctor Who" has elements that are recognisably Doctor Who of old, but so much of it is nothing like the original, at times I'm not sure I even like it.

    Will "The Prisoner" be the same? Here's hoping it retains some integrity.

    Be seeing you...


    By Anonymous Anonymous, at 6:12 PM  

  • I appreciate autiebiographies for getting the message out to people who have not yet realized that they are on the spectrum (it sucks when you don't know why you are different or why you are not respected or understood).

    It's a maddening circle that there always seems to be bad along with the good--as far as exploitation goes--which is one of the ongoing battles of humanity. Unfortunately, it happens in every crack and crevice round the world.

    I am editing a memoir and I plan on including information about the Autistic Rights Movement and the Autistic Community. My goal is to hopefully please everyone though I know what I am up against (the impossible?).

    I am mostly angered by the misdiagnosis, as well as the underdiagnosis (or even just the plain misunderstanding of) females on the autistic spectrum. There are a lot of autism myths I would like to help squash, debunk, and re-direct.

    Last, but not least, I love writing. I want to, and am highly driven, to write. That noted, I have a robust interest in autism and autistics. Hence, it is the subject of most everything I compose. What to do, eh?

    Such is life.

    By Blogger E., at 8:50 PM  

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