author needs AS or HFA consultant(s)

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Hi,

I'm writing a speculative fiction novel (first timer, but long in development) and need your help. One of the main characters is a woman, a prominent scientist, with Asperger's Syndrome or High-Functioning Autism, and having a consultant will always trump research. One of the main themes is objective reassessment / rejection of cultural traditions and norms, which is something those with AS and HFA can appreciate. This character will be used to highlight that theme, and my intention is that she'll be asexual, or mostly asexual, or at the very least will decide it's not worth the trouble - and she can vacillate and may be occasionally conflicted about it, rather than being a static stereotype.

My going in position is that passively reading posts will never be better than one on one communication. I've been communicating asynchronously for long enough to know that subtleties require iterations and clarifications during the process of establishing a common language, at the very least. Offline conversations provide opportunities to discuss representative situations appropriate to my fictional context. What I intend to do with this character can not possibly capture the entire breadth of experience of thousands of people, so not matter how many posts I read here it can't be a more effective or efficient way of achieving my goals than some offline conversations where targetted aspects and ideas can be discussed. I don't wish to exclude anyone, but realistically my project *will* exclude many personalities. It is a single character, with a unique personality, in unique circumstances, not an amalgam of everyone meant to represent all autistic women. I hope you can understand my angle on this. I really do need one on one help.

I do intend to peruse wrongplanet's content, though. The value of this site is clear.

Please contact me at "teamoverboard at comcast dot net" if you're interested in helping me create an accurate portrayal. Those who relate to asexuality are preferred, and women are preferred because the character is a woman, but all help would be appreciated - men with AS/HFA will be closer to it than I am.

This is not a veiled attempt to have a relationship, I'm really just looking for someone with AS or HFA to help me create a character portrayal that does your condition justice while achieving my story and character goals. Thanks!

Why not just start the conversation here? We hardly know you and your profile doesn't provide much info other than you being a male NT.

I was a Biology major in college and am still vaguely interested in the "soft sciences". Though I am a lesbian, my sexual drive is low and I have often been referred to as androgynous. I have gone years between sexual partners, and my current partner (9 years) and I are no longer intimate in that way, though very close in all others.

My therapist is currently attending a conference on gender identity, there being 3 aspects to it... the core identity, the interactive identity, and the sexual affinity identity (or something like that). There seems to be a young nephew in her family that is manifesting a core male identity with a female interactive identity (AKA cross-dresser). As he is only 5, it's still unclear what his sexual affinity will be.

I find your premise of the questioning of cultural norms through this character intriguing.

Maybe I can bootstrap this thing with this post.

In reading various sites describing Asperger's, I encounter descriptive terminology like the following. Please don't be offended by the way this is worded. I know it may come across as a list of flaws, but let's be plain spoken, shall we?

-- Aspies are plain-spoken and often have difficulty recognizing non-verbal behaviors found in eye gaze, facial expression, body postures and gestures. This can result in inappropriate social behaviors, an inability to gauge the interest level of the other people in the conversation, an inability to detect cues for when people want to end the conversation or change the subject, and a lack of awareness of when they're hurting other people's feelings with their plain speaking.

-- Aspies often have an inflexible adherence to specific non-functional routines or rituals

-- Aspies often have stereotyped and repetitive motor mannerisms

-- Aspies often have a persistent preoccupation with parts of objects [I'm not sure I even know what this means...]

-- due to difficulty with non-verbal cues and difficulty understanding social boundaries, Aspies can be very susceptible to bullying, including stealth bullying by so-called friends

-- Aspies may have difficulty understanding jokes or sarcasm [Surely Aspies can have a sense of humor. Please help me understand.]

-- Because of sensory integration issues exposure to loud noises, bright colors, crowds, certain fabrics or patterns, certain textures, and certain kinds or amounts of touch (e.g. hugging, etc.) can make Aspies anxious, possibly very anxious

- Aspies often avoid eye contact, do not use contractions (e.g. don't), and may seem overly serious during play

Sure I can imagine what all this means, but in writing a character I need to really have a good sense of just how far things like this can go. I need examples of what's common, what's extreme (i.e. rare), and what's just plain out of the realm of possibility. And more importantly I need to gain an understanding of the kinds of thoughts going through your mind when these things happen, the kinds of workarounds you've tried, including attempts to hide these things, and the ways in which you come to accept yourself and neurotypicals faced with the difficulties of communicating across this gap. I need specific examples of these kinds of things, as they initially manifested, as they changed over time (if they changed) either naturally or in response to conditioning by you or your social influences, and how they manifest now. Don't pull any punches on what you think of NTs, but also give credit where it's due to NTs who are better about it than the jerks, finger pointers, bullies, and laughers. I need to know the depth of your feelings about these things and about specific instances. Only then can I present a character that will not be a stereotype and NTs and Aspies can read and say to themselves, "wow, that's a realistic character".

So, recognizing that some fraction of these characteristics are only "problematic" because of cultural norms (which are defined by the statistically larger population, of course) and some of them are "problematic" from an objective standpoint in terms of effective communication, regarding the above list of characteristics of Aspies, I need your help with these bullet items:
-- examples, including how these things may have changed over time, and how/why they've changed (naturally, disciplines, habits, reminders)?
-- what's common, what's rare, and what's impossible?
-- what goes through your mind in the moment and afterward?
-- what kind of workarounds do you use, if any?
-- how have you come to accept yourself and NTs (if you have) with regard to these differences?
-- how do you *feel* about this stuff, in the moment, and on reflection?
-- in what ways (if any) do you ask NTs to change their behaviours in order to smooth things out, or raise their awareness of how to make things work, etc.?

And as you can see I'm asking for a lot of personal information, which is why I offered my email address in the original post, so you don't have to splatter yourself all over the world with your name right there attached to the post. And I may not understand you the first few times around, so we may iterate several times, with me asking for clarifications and maybe leading your examples and expressions in ways that will help me in my task. All that iteration may not be something the world needs to see, either. Please consider email.

This is only the start. There's also the whole thing about the asexuality, but I think I need to start here first!

Thanks, Aspies!

(By the way, as an offer of reciprocity, and toward mutual trust, here's something about me. Due to family of origin...dysfunctions, let's call them, I was about two years behind the social development curve for my entire childhood and into adulthood and only began to recover when I graduated from high school and left that social situation. When others were forming friendships with the opposite sex I was still trapped in the cooties phase. When others were dating I only needed friendships with the opposite sex, and so all of my overtures of friendship were assumed to be romantic, which resulted in very painful and destructive social paralysis. I know what it's like to be socially handicapped and to this day I struggle with friendships as a result of the insanity and abuse of my formative years. I'm not saying I know what it's like to be an Aspie, but there's overlap in our experiences and my history has given me an objectivity about cultural norms which has led to this book project.)

I'm going to guess that you'll get a better response if you are...
brief
concise
and give concrete examples... AKA what ifs

Because of varying levels of executive deficits, such large, lengthy and involved posts are difficult to process, prioritize, and respond to for many AS/HFAs.

Pick one thing, "dress" your character in it, and ask us what we think.
We'll let you know, I assure you.

I didn't even read your second post all the way through. I'll have to go back and wonder at it.

Some NTs can go on...

Haha! Indeed! Especially me!



I addressed this in another long post in the Media Relations forum where I have the same thread going. pandd was kind enough to attempt a response, and it was a great one, but echoed what you're saying here. Basically, my response goes like this: 1) there's no way I can imagine the kinds of behaviors which are described at a very high level in the "diagnostic summaries", 2) if you require specific examples, how can you be capable of creativity and imagination? That is not a rhetorical question. I believe you must be capable of creativity and imagination, which entails asking yourself open ended questions. I think this is an obstacle we can overcome. I will try to be brief, but I ask that you think of my questions as personal, meant for you personally, and don't try to answer "for all Aspies". It's all about examples. pandd gave me a couple of examples I never would have thought of myself. Imagination is to a great extent limited by previous experience. But I'm going on and on again, aren't I?

Thanks!

p.s. This Aspie character is NOT a villain, she is actually the main protagonist. Woodpecker made a point of checking that with me, and rightly so!

Huh?
Taking the first one...
Do you mean you really can't imagine someone who is direct and straightforward, who cuts right through the small talk, social placation and BS to address the actual issue? Who is completely unaware of office politics, can't tell the difference between friend and someone just being nice, doesn't have a clue why people think they're disrespectful, and is unaware that another person is reaching the boiling point until they actually blow up in their face? Really?

Or you just can't imagine how someone like that can hold a job?

That's been my problem. LOL

By very high level do you mean severely impacted or only mildly affected such that the person seems normal just out of sync?



Do you mean if I require specific examples, YOU can't be creative? Wow. That's sad.

You're displaying typical NT vagueness, which comes across to me as an unwillingness to stick your neck out, develop and concretize a thought/picture and test its functionality. If you can't come up with a sample incident, a small scenario, how are you ever going to write a book?

Or are you worried that someone is going to rip your ideas off?

Let me give you a hand...
Take a moment from your day, describe it and ask us how we'd respond.

Take a scene from another book, movie, TV program and put it before us.

For example... lithe, athletic, and tired, Capt. Evian crossed to the noisy crowded bar, shoved a couple of ensigns aside and ordered a Thunder Highball. As she ran her claws through her glistening mane, she reflected on her double shift monitoring the data transmissions from the outlaw colony encaved deep within the asteroid in sector Alpha subprime 4.

Is this something an Aspie would do? LOL

This one wouldn't go to a noisy crowded bar to relax, that's for darn sure. My idea of relax is to go back to my space, eliminate all unnecessary noise, pour a nice glass of wine, and settle in with a good book... on my special interest. Which in this case would probably be on factors that can disrupt, disturb and disguise data transmissions, new classes of transmission equipment, new theories indicating new directions in hardware development for data transmission... etc.

Damn, it's hard to turn pages with claws...

OK, I've shown you mind, now you show me yours....



Ah, but some of her crewmates will regard her as a villian or she's not Aspie. Just a little dynamic tension for you.

Couple of things, maybe it's meant in a friendly way and certainly a number of people on the site use the term "Aspie", however some loathe it and find it patronising....sorry, but you might need to bear it in mind.

A point raised by my project supervisor- her feedback was in terms of lab work etc not only was my AS no issue at all- but also pointed out academia is full of undiagnosed AS, from mild to full blown, the issue there being they did not themselves know. In fact, sometimes for me, dealing with the "might-be's" is more fraught.

Cultural stereotypes to avoid- some of us like nice clothes etc - takes the same amount of time to select and pay for things that match and fit after all. Even if not "fashionable" in a mainstream sense.(yes, I like velvet and cashmere and lambswool and pure silk, they feel nice...If I'm going to rub my arms might at least enjoy it) Even if I am (I suppose) mentally and emotionally assexual (convenience and avoidance of confusion underpins THAT) I do look conventionally female. Apparently "high maintanence" though

It's possible to have a regional accent, use slang etc (even my classic Autism son has a distinct local accent)

Obviously, your character will be what they will be, and you can't represent everyone on the spectrum however some differing perspectives are worth considering so you don't end up with a stereotyped idea. Also WP does not represent the entire AS population, and of those on WP some people are happy to post and share a lot, some of us less so, however please don't give additional weight to responses based on post count and willingness to respond (meaning me too), if a thread or topic doesn't apply, or I disagree I don't add anything, which probably happens a lot with other members too.

Lastly, you may have realised that some are non verbal, how we communicate on here is different from people with AS face to face. Say if you raised these questions in person, I know I wouldn't answer you- certainly not verbally.

Good luck though, and hopefully we'll get an update on the book?

Ack! No no no no. Let me try that one again.

Given only the very high level descriptions of those behaviors, I can't imagine *specific examples* out of thin air. The descriptions are too abstract and high level. That's why I need your help. Sorry about the confusion. This is exactly the sort of clarifying iteration I didn't want to load down the forum with. This sort of miscommunication is inevitable.

This is an interesting situation. If I start listing what to me are wild examples of these behaviors which are only vaguely described in the AS sites I've seen so far, someone would surely attack me as being a "typical NT" and accuse me of stereotyping you or thinking you capable of things that to you will seem obviously and offensively inaccurate. By opening it up to allow you to fill in the details, you attack me for being "vague like a typical NT". Who is doing the stereotyping? That's a rhetorical question, let's not go there. I don't want to fight with anyone here. To me this is to be approached like any cross-cultural first contact situation, and misunderstandings are inevitable. (If a say that I won't take it personally, will someone accuse me of being a typical NT and considering you "not in control of your faculties"? If I decide to take it personally, will someone accuse me of being overly sensitive and lacking understanding of the differences at hand, or perhaps of being INsensitive to how often you are misunderstood and that you must have pent up anger that naturally will come out? These are the questions that are now going through my mind.)



I've been proceeding from the assumption that you are more accustomed to having the eyes of the diagnostic world upon you and have a higher awareness of differences between NTs and those with AS than someone like me. That assumption leads me to defer to your knowledge base on these matters. I would have thought it demeaning to you for me to list a bunch of things and ask you to give "simple yes or no assessments". Perhaps I'm all wrong about that. In any case, this is definitely educational for me!



Excellent point! I'll keep that in mind.

Thanks!

Thanks for the warning, and apologies to anyone rubbed the wrong way. It was definitely intended to be friendly. I picked that up somewhere, I think on this site, but if it's problematic I'll stop. I guess I'll go with "you", "you all", and "those with AS" or something equally awkward, unless you, you all, those with AS have a better suggestion? (This is NOT sarcasm.)



So far I have not been assuming anything about clothing, one way or another. But thanks for the warning, it's a good one. Any suggestions about other stereotypes to avoid would be very helpful.



Another good one to keep in mind. On this point, too, I was NOT assuming AS would be a factor in selecting regional speech patterns.



That's exactly my goal, and it's why I'd rather keep this open to your (pl.) input rather than have me listing examples pulled out of thin air. Once one person provides an opinion, that will tend to end further discussion. (Which is another reason I preferred email - I assumed the anonymity of email would allow everyone to feel more safe, but now I see it's exactly the opposite. It appears you are very comfortable with a public situation in which you watchdog the situation collectively. You are ganging up on me. Fair enough. Turnabout is fair play, as long as you don't assume I'm the enemy. I feel fairly certain I'm not.

On that note, I would like to point something out. It only just occurred to me today that there may not be many novels out there with protagonists who have Asperger's. And *that* means someone out there is going to assume I'm doing this for cynical "be the first one" reasons. Honestly, it never occurred to me. I was always intending to have a character essentially designed around *me*, and *my* issues with cultural norms, and *my* social idiosyncracies. One day Asperger's came up and it became immediately obvious that making this character have AS was a far better way to go. Sure, having a name for the syndrome can lead to stereotyping, but the flip side of naming it is that it gives it weight, credence, acknowledgement that it exists. Believe it or not, your situation is more publicly known and accepted for what it is than mine. I don't think I could sell my character without AS, because society is not yet ready to buy just how much childhood emotional abuse (with no overt physical abuse) can mess someone up. Maybe that's a crutch, but it allows me to meet you and if in so doing I can present those with AS in a positive light, all the better. Maybe someday I'll do the other thing, but not now. It's just perfect that she (the protagonist) has AS.



I'm not sure how I can give weight to non-existent examples and non-existent shared life experiences and knowledge about AS. That's not sarcasm. But thanks for mentioning it. I'll keep this in the back of my mind in case I can somehow figure out how to do something effective with the sentiment.



Oh, yes, that's the opportunity given to us by the anonymity of the internet. I do understand, and I will definitely keep in mind the difference between how people (anyone) would interact in person versus by text on the net.



The book has a core story arc and I'm filling in details now. There will be several iterations of expansion, addition of details. This pursuit of information about AS is looking ahead to the future addition of details. It's good to get a head start. That way I can add form to the broad story elements with accuracy instead of writing inaccurate, stereotyped junk about AS and then having to start over from scratch later. DonkeyBuster is right, though, I really can't share a lot of details here in public. It just wouldn't be prudent. But you'll know more eventually. I see that as inevitable.

Thanks!

Last edited by deathbymeteor on 18 Sep 2009, 7:41 pm, edited 1 time in total.

Honestly that was too much text for me to read, but have you actually tried meeting people with HFA? Not everybody is the same, and if you were to meet a few HFA people you might learn a lot about it. Also, you could try making a survey on a site or just here. List symptoms and we can write about what they mean to us and give examples? Sorry, I didn't read most of the posts.

I will repeat some previous requests for examples, and add a few more (and I'm trying to be terse!):

Can you share specific examples from your life or from the lives of others with AS whom you know personally of the following. Again, please think of this as relating to you personally, not people with AS in general. I can get generalities elsewhere, and they do not personalize.

-- being bullied by non-friends

-- being stealth bullied / manipulated (via button-pushing) by betrayers into doing something purely for their benefit, or in order to embarrass you by having you do something out of social bounds or even illegal

-- ways in which your creative expressions (visual art, writing, carpentry, sculpture, creative demolition, etc. or even daydreams) might be notably different than what the establishment would expect from neurotypicals (again, I'm assuming you know more about this field than I do, please don't be offended - if this question doesn't work for you, just ignore it)

-- ways in which you are more capable than you think you would have or might have been had you been neurotypical, given your origins, if at all (and I don't necessarily mean intrinsically more capable, this could just as easily include social or internal mental habits which turn out to be useful and which NTs don't typically develop "because many of them don't have to" - in my case, I definitely have learned a lot about human psychology, anthropology, linguistics and even history specifically as part of how I've had to cope with my dysfunctional origins, and that learning has enriched my life tremendously. This question is meant to discover if you have had similar experiences)

-- examples of any differences between how you relate emotionally to your friends who have AS and how you relate emotionally to your NT friends, if any (This is not about mannerisms or motor functions except to the extent they color the emotional connections. In my life, for example, I generally have little interest in most people and find it very difficult to respect anyone. For me respect is at the core of every relationship. If I find someone I can respect, I can find myself getting emotionally attached too quickly and consciously "reel it in" so as not to make myself too emotionally vulnerable or too overtly needy. With those I want to relate with I go from being a fairly distant, standoffish person to being familiar and huggy. That sometimes drives people away, and the cycle continues. This is the kind of info I'm looking for, but specifically toward understanding how it may or may not be different between your AS friends and your NT friends.)

The more we do this the more thoughts come to mind, but someone told me to keep my posts shorter, so I'll stop here for now.

If non-public sharing is easier, I'm at "teamoverboard at comcast dot net".

Thanks!

I'm pursuing multiple paths to an education, but each reveals different things.

Sorry, you won't be the first, so you can drop that worry. Elizabeth Moon, for one, has already written an Aspie book... obviously I am not offended by the term. I'm sure there are others. You might ask on the Lit thread.

Seems to me you should write about what you know... which is your own pain and suffering, and it's consequences, rather than trying to credibly imagine what it is to be AS/HFA through online conversations.

I believe Moon was able to write her book because her own son is AS.

Believe it or not, society is made up of lots of individuals that have experienced extreme emotional abuse and your book will have a much truer ring of authenticity if your character is just totally head-F***ed, because you know that all the way down to the DNA level. Write about what you know... isn't that what they always say?

So a few more days here and you'll be able to write about what it's like to 'talk' to a bunch of AS/HFAs who don't conform to social conversational conventions, write bluntly and straightforwardly, and demand that you meet their parameters for conversation rather than yours.

Like lab rats? We're aware of the differences because of our daily experience, not because someone with initials after their names Dx'd us and informed us of our maladjustment. False assumption.

Our knowledge base?... {snort} by that would you mean our lives?

Anyways, if you still want to continue down this ill-fitting path... what Dx trait do you want our personal experience of first?

This is your version of terse?! Concise?! Succinct?!
Whoa.

You seem to think we know how NTs think... we don't. I have no idea what makes my creativity different from someone elses. I just hear about it from them. To me it seems perfectly ordinary, obvious, and reasonable.

You might try reading Temple Grandin's book "Thinking in Pictures".
You might also look into what executive dysfunction is, because I think you have it. One of it's qualities is an inability to organize and restrain speech... of which this is an example.

Have you taken the AS tests?

You might consider that your protagonist is intellectually gifted, but because of "co-morbid" learning difficulties she realized only later in life how intelligent she really is. Being intellectually gifted and having an Autism Spectrum Disorder is euphemistically called being "Twice-Exceptional." It is a confusing state of being (I know this from experience) because there is such a tremendous internal tension stemming from what comes easily (for me visual/spatial memory) and what comes less easily (being able to register emotional content). There are studies that explain specific cognitive traits of being twice-exceptional that could help if you are interested.

Z