Writing a book on AS: Input requested

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kotshka
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10 Jul 2013, 1:36 pm

I've just gotten a new job which will provide me with ample spare time to finally get started on a few side projects I've been planning for ages. One of them is a book about living with AS. I spent a portion of the day today organizing some of my notes and deciding precisely what I want to accomplish with this book. When it's completed, I plan to self-publish it as an ebook to be sold for, at most, a few dollars (just to slightly reduce the money I'll lose by spending time writing instead of working - I certainly don't expect to be making any real profit).

I don't have all the specifics planned out just yet, but I've managed to solidify my ideas up to this point:

1. The main goal of the book will be to help communicate to NTs what it is like to live with AS (particularly as an ADULT - there seems to be plenty of info out there about children), as well as to help those of us with AS to understand some of the reasons behind what we experience. I will rely on my own personal experience for this, as well as what I've learned by talking to others, including those on this web site. It will be clear from the start that the information is based on personal accounts rather than official research, with an emphasis on the fact that those who experience these things certainly understand them far better than someone who simply studies them. I want to make it clear that the autistic community is perfectly capable of speaking for itself, and we prefer if people talk *to* us rather than *about* us. All of my own personal opinions will be clearly labeled as such. Everything will be written as clearly and simply as possible, so the average person can understand it.

2. I would like to include short pieces written by various people with AS in each section, providing their personal viewpoint and experiences. This will be both to support my views (showing that I am not just making this stuff up) and to demonstrate the diversity in the autistic community (we all experience different things). I will ask on this forum for assistance with this when the time comes, and of course anyone who contributes will be credited in whichever way they prefer.

3. An introduction will include summaries of some theories of what causes autism, including my own opinions, as well as a brief description of the diagnostic criteria for ASDs according to the DSM-V (and how it differs from the DSM-IV). Also included here will be my opinions on diagnosis of autism, why I think the criteria are sorely lacking, and why I don't think (community-assisted) self-diagnosis should be discounted. The point I want to drive home here is that the diagnostic criteria are focused on the practical, outward effects of autism rather than the root causes of these "traits," and people can lose a diagnosis (or fail to get one) by controlling their behavior even though the underlying problems are still present.

4. The bulk of the book will be divided into themed sections. Each section will begin with explaining how an NT experiences certain situations (normal perception, normal senses, reading of body language, focus on the big picture, etc. - most NTs never think about these things because they take them for granted, so attention to be called to it as a comparison) and then demonstrating how someone with AS experiences it differently. Here is the tentative list of topics to address - some of them will probably be combined once I get started:
-Social Skills (including verbal and non-verbal communication)
-Sensory Issues
-Meltdowns
-Stimming
-Need for routine
-Imaginary friends
-Honesty and trust
-Clumsiness and proprioception
-Obsessions
-Disability and giftedness
-"Common sense"

5. Although I will be relying heavily on personal experience to write this book and it will probably include references to and descriptions of events in my life, it will not be autobiographical. In fact, I'm still very unsure whether I'll even put my real name on it, since many of the people in my life (including most of my family) don't even know I have AS. This detail can be decided much later.

6. I will probably draw on some of the essays and articles I have already written, though they will be edited for inclusion in the book. It's a good starting point, though, as I've written a lot. If anyone is interested in seeing some of my writing style, my blog (inactive for a while now) can be found here: http://crowdedhead.blog.com/tag/asperger/ (Note that the writing style of the book will be, for the most part, quite different from the one in my blog.)

So, that's what I have for now. I will try to start writing tonight or possibly tomorrow. What do you all think? I appreciate and will consider all feedback, although of course, in the end, I will make my writing decisions on my own. Also, how many people might be interested in contributing something to the book? Finally, I will certainly be asking a few friends to help me edit the book as I go, but I think it would be wise to also ask for input from those who do not know me in person. How many people would be interested in doing some editing work once that time rolls around?

My last question is, is anyone aware of any books which have already been published which have already attempted to accomplish my goal? I don't know of any, but certainly I want to check out anything else like this that has already been written, so I can make sure my book adds something new and useful.

Thanks, guys!



redrobin62
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10 Jul 2013, 2:42 pm

I never thought about imaginary friends as being an autistic trait. I certainly didn't have any so I'm just speaking for me.

Your book seems ambitious in scope. Good luck with it.



kotshka
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10 Jul 2013, 2:49 pm

redrobin62 wrote:
I never thought about imaginary friends as being an autistic trait. I certainly didn't have any so I'm just speaking for me.

Your book seems ambitious in scope. Good luck with it.


It is something very common for those on the spectrum. For me, it means that I have a sort of library of people in my head (almost entirely people I know but including a few fictional characters and celebrities) rather than someone truly "imaginary." Whenever I'm alone, someone imagined is always there with me. I talk to them (under my breath generally), practice conversations with them, and even get advice from them. At age 28 this is no smaller a part of my life than it was when I was a child.

Certainly everyone is different and not all aspies have imaginary friends like this, but certainly many do and I think it will be useful to include it in the book (especially the part about practicing conversations).



redrobin62
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10 Jul 2013, 3:42 pm

Can you then see how sad I must be?

I'm so lonely I don't even have any imaginary friends.

If I did have imaginary friends they'd stop speaking to me anyway.

They wouldn't let me into the "Tea For Two" party because my imaginary friend didn't show up.

I tried to play chess with my imaginary friend but he insisted he didn't know the rules.

Sorry. Couldn't resist.



benh72
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10 Jul 2013, 4:13 pm

It sounds like a great and worthwhile project.
In answer to your question about if anyone else has done something like this; John Elder Robison wrote "Be Different" as a semi autobiography, and advice for those on the spectrum, families and teachers, and Temple Grandin edited "Different not Less" - which is a book containing stories written by people on the spectrum - touted as a book to help others on the spectrum come to acceptance of their condition, as well as helping their friends and family understand.
I'm sure there are others out there, but these are two of the books I have on hand that I happened to be reading at the moment that fit your category of similar books.

There are also numerous autobiographies of individuals with Asperger's and Autism, and also Nick Dubin's Asperger's Syndrome and Anxiety - A guide to successful stress management.

Don't be put off though, you still have your own input and experience to contribute, but it may be a good idea to read through these to see if there are any ideas they touch on that you'd like to elaborate on, or things you were planning to write about that they have thoroughly examined, just so you don't feel you're writing a "me too" book.

I hope that helps.



vanhalenkurtz
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10 Jul 2013, 7:52 pm

My (unsolicited) advice. Write an article first. 3,000 words, tops. Send it around and hope to get enough editorial response to inform you what perspectives on AS are considered read-worthy. And which are not. A book is a very long project w/ a blindfold on throughout. It is less crushing to reconfigure your focus w/ a shorter piece. Almost all successful non-fiction books begin life as articles. Not that I ever listened to any advice when I was your age. Best of luck!


_________________
ASQ: 45. RAADS-R: 229.
BAP: 132 aloof, 132 rigid, 104 pragmatic.
Aspie score: 173 / 200; NT score: 33 / 200.
EQ: 6.


kotshka
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11 Jul 2013, 7:56 am

vanhalenkurtz wrote:
My (unsolicited) advice. Write an article first. 3,000 words, tops. Send it around and hope to get enough editorial response to inform you what perspectives on AS are considered read-worthy. And which are not. A book is a very long project w/ a blindfold on throughout. It is less crushing to reconfigure your focus w/ a shorter piece. Almost all successful non-fiction books begin life as articles. Not that I ever listened to any advice when I was your age. Best of luck!


Thank you for the advice. It's not my first time writing. I've written articles on these topics before and had one book published. (It was not a non-fiction book, but it got me familiar with the process of publishing.) I've gotten a lot of positive feedback already on the things I've written, which is what made me decide to go for a full book. Since I plan to self-publish, I'm not too concerned about impressing a publisher, and I certainly don't expect to make any money. I just want to get the information organized and out there in a format people might actually stop and pay attention to (as opposed to a blog which most people will not take much interest in). I've spent such an immense amount of time explaining things to people - for example, how meltdowns are not sudden and without cause, but are actually the result of my hypersensitivity, which is actually a result of my detail-oriented perception, and then describing using various metaphors the way in which I see the world, how every sound is at the same volume for me, every detail of every image must be consciously processed, etc. Based on the feedback I've gotten, I feel like I really have something valuable to say as well as the ability to say it in a way people can understand, and it is worthwhile to put it down as a book rather than repeating my stories and descriptions over and over again.

benh72: I am aware that there are quite a few autobiographies out, but the focus of my book will be on communication and understanding rather than my personal life (though of course I will draw on my experiences). Thank you for the titles of the books you gave me. I'll definitely have a look at them. From the sounds of it, though, they are different from what I'm trying to do. I'm responding to what I perceive as a terrible lack of information on what autism actually *feels* like, designed primarily to educate NTs. There is plenty of information about the symptoms and behaviors, advice on how to respond to it, and advice for aspies for learning how to live with their condition (and get jobs, etc.), but I want to really go in-depth about what AS really is from the inside. I hold on to the hope that I might influence NTs enough, especially those who study autism, that they might change their approach to studying the condition and eventually maybe even revise the diagnostic criteria (at least for those high-functioning enough to describe their experience so diagnosis needn't be made indirectly), although I am not so foolish as to expect to do that with one book. : ) I'm just trying to make a start.

The DSM describes autism solely by its practical impact on life. The person has impaired social skills and prefers routine, gets upset when the routine is disrupted. Sure, that's all fine, but it doesn't describe at all what autism actually is. Autism is not behaviors. The behaviors are just the result of deeper things which are never directly discussed in these diagnostic criteria or lists of "ways to tell if your child might have autism," etc. I get a little tired of people telling me I "can't" be autistic because I control and hide these "signs" so well after years of practice. And most of all, I'm tired of seeing books and studies written by NTs who are doing experiments on autistic people and talking about us as though we can't speak for ourselves.

Hope that didn't sound too ranty. Anyway, I'm sure my book will contribute something worthwhile. I'm sure many of these themes have been touched upon here and there, but it doesn't seem like anyone has done precisely what I'm trying to do. Of course, if someone has, please let me know, so I can make sure I do something different. Keep the feedback and suggestions coming, guys, and thanks for what you've provided so far.