Included or Appropriated?

Portrayals of non-neurotypical people have been growing more popular in the fiction of recent years. Mark Haddon's The Curious Incident of the Dog in the Night Time, for instance, featuring an autistic teenage boy, is currently rehearsing a stage adaptation for Britain's National Theatre, and is in development for a film as well. (A woman of our acquaintance, for instance, with an adult autistic son herself, found Haddon's book so angering she threw it away unfinished.) Francisco Stork's Marcelo in the Real World, drew praise for its beautiful writing and sensitive handling of the theme; but also drew criticism that the "autism-like disorder" of its protagonist appropriated and misrepresented an actual condition. Some people feel such works promote equality by raising the profile of non-neurotypical people in mainstream society; on the other hand, some people feel such works are exploitative and, if not created by someone with personal experience, misrepresentative.

What are your views on this controversy? Can you recommend particularly good (or bad) portraits of non-neurotypical people in modern media?

---

 

The Board Administration Team
(hapax, Kit Whitfield and mmy)



Comments

[Timothy (TRiG)]

Warning for nasty stereotypes: violence.

In the last novel I read, it was mentioned as an aside that one character's son was mentally ill. A few chapters later, we got to meet the son. The description (which did go inside the boy's head to look at his thoughts) was similar in some ways to that in The Curious Incident ..., so I felt that the boy was perhaps somewhere on the autism spectrum (which is not a mental illness, but hey, this was a thriller written in the 1980s, so we'll leave the writer some wriggle room).

And then in the last chapter we discover that the mentally-ill/autistic/whatever boy has committed a senseless and very bloody murder. And killed a dog while he was about it.

I was not impressed.

And I really really don't know the history of how the health profession has approached these things, so I honestly have no idea how much slack that book should be given for being a product of its times. (Which I've just looked up, and it's far more recent than I thought. 1996. Not much slack, I'm guessing.)

TRiG.

[Millie]

I guess one piece of recent media that comes to my mind as not going down the road Timothy(TRiG) mentions is the show "Alphas," and the autistic 20ish-year-old character, Gary. I know that show has a lot of problems, but it seemed to at least have had a handful of good moments with him. Also, his special powers don't seem, in my memory, to be connected to autism.

[Norman Rafferty]

"What are your views on this controversy?"

If producers are restricted to creating content only about their personal experiences, not only will most kinds of diversity be eradicated from TV, movies, books, and culture, but there will be a rise in escapist fantasy. FIFTY SHADES OF GREY is a strange BDSM fantasy series ... but it owes its very genesis to the TWILIGHT series, which is about vampires and werewolves. While one can accuse the FIFTY author of being naive or misrepresentational or even sexist, does TWILIGHT get a pass because vampires and werewolves aren't "real"? Consider TRUE BLOOD, or the Anita Blake novels, which depict alternative-lifestyles and kinky sex.

If an author is prevented from writing from personal experience, then the reality of certain aspects of life -- which could be compelling -- will be replaced with fantasy stories that use unicorns and vampires and whatnot for stand-in metaphors. While those stories will be compelling in their own rights, it does beg the question if people are so afraid of inauthenticity in their stories that they would banish any serious inspection to Neverneverland.

Whether it's fantasy or reality, nothing excuses a lack of research. The writer of GAME OF THRONES has obviously done his homework, and he's a veteran of many series and anthologies, and his attention to details show through. Likewise, the Harry Potter series wouldn't resonate with many people if the books didn't investigate genuine emotions and feelings.

"Can you recommend particularly good (or bad) portraits of non-neurotypical people in modern media?"

In its seven-year run, the TV show MONK had both good portraits and bad portraits of mental illness. At its best, the writers and actors showed the difficulty that the title character with performing certain everyday tasks, especially with how life-shattering the same-ness of his life became with the death of his wife. At its worst, the OCD was milked for cheap laughs, especially when it was made inconsistent for humor value.

[chris the cynic]

I don't have much to say with respect to the autism spectrum. I liked Parker in what I saw of Leverage, but it was only the first and a little of the second season. And... yeah, I haven't been much of a consumer of media of late.

-

does TWILIGHT get a pass because vampires and werewolves aren't "real"?

No. But since you bring up Twilight I'm going to shift gears into portrayals of depression. I will probably never stop recommending .hack//Sign as an example of it done well in fiction and Twilight as an example of it done (apparently) accidentally in fiction.

(Anyone interested, Ana Mardoll is doing a decon of Twilight, and I've been talking a slow walk through .hack//Sign.)

Since I've derailed onto depression, something someone said about the tendency to accurately portray depressed characters has stuck with me since I heard it. Most people know depressed people in their lives, there's a decent chance they don't know those people are depressed, and as a result a character they write whose like Mike or like Suzy, will end up being a fairly good depiction of a depressed person because Mike/Suzy is a completely realistic depressed person, being a real one.

I wonder if a similar thing has to happen with other things. Set out not to create an autistic character but a character like, say, Bobby, and Bobby happens to be on the spectrum.

This wouldn't mean the person had to know someone on the spectrum, exactly, but they'd need to do enough research that they could understand such people as people, rather than symptom sets.

-

Honestly, I have no idea.

[Amaryllis]

does TWILIGHT get a pass because vampires and werewolves aren't "real"?

No. But from what I've read of Twilight-- which admittedly isn't much, although allow me to second chris's recommendation of Ana's blog-- the problem is not so much that the vampires and werewolves aren't factually real, it's that none of the characters are emotionally convincing.

If an author writes a story about neurotypical people reacting in a realistic way to unrealistic situations, does that count as "writing from personal experience"?

I liked "The Curious Incident..." as a novel. I'm not enough of an expert on autism to know if it's a valid portrait, and if I remember correctly the protagonist is never identified with any kind of diagnostic term. I enjoyed the book as a visit to one particular, individual mind, but I'm not sure it can or should be taken as a realistic, for whatever that means, depiction.

But then, that's easy for me to say.

[WingedBeast]

I think the answer here is "Write what you know, but don't forget to know what you write."

In other words, do you research. Don't assume you can just muddle through based on what you know from watching Rain Man.

This is a recurring problem, people base their portrayal of the experience of "Category X" on what the media mostly portrays of "Category X."

If you know, in real life, any Category X, or are one, yeah, it can get offensive quick.

[chris the cynic]

Also worth noting that the inspiration for Rain Man wasn't autistic, he had something else going on entirely. (Note that Rain Man is not in any way based on a true story, but the movie was inspired by the person who would go on to create it meeting a real person.)

[chris the cynic]

Also, as a bit of random information. I have no idea what it's like to be normal. It's entirely possible that to someone who has enough experience every character I write comes off as being non-neurotypical to some degree because that's what I know.

[Eva-Lise Carlstrom]

The title character in the series Bones appears to me to have Asperger's, although it's never stated. She's a highly-skilled forensic pathologist specializing in skeletal evidence, and heads up a luxuriously-appointed lab in the fictional Jeffersonian Institute. She also writes mystery novels. Throughout the series, she demonstrates powerful intelligence and expertise, combined with an often surprising lack of understanding of social cues and popular culture. When she finds social norms and her logical perspective in conflict, she considers it obvious that logic should win out, and is consistently baffled by her neurotypical colleagues' insistence that social scripts matter. Her name, Temperance Brennan, is similar enough to "Temple Grandin" to cause me to suspect that the latter real person provided some inspiration. One aspect that makes her not like any autism-spectrum person I have ever known is that she invariably dresses to the nines, perfectly made up and wearing a beautifully visually balanced ensemble, with no apparent regard for such factors as avoiding seams and uncomfortable textures.

[Leum]

I enjoyed the memoir "Born on a Blue Day." The writer is gay and has Asperger's and I found it a useful read after being diagnosed.

While I love the Big Bang Theory and Sheldon's character, I also find it troubling. While the writers deny that Sheldon is on the Spectrum, he's a very clear caricature of a person with Asperger's. The show has a whole host of problems from a social justice perspective, which I mostly tune out while watching.

[lonespark]

Most people know depressed people in their lives, there's a decent chance they don't know those people are depressed, and as a result a character they write whose like Mike or like Suzy, will end up being a fairly good depiction of a depressed person because Mike/Suzy is a completely realistic depressed person, being a real one.

I wonder if a similar thing has to happen with other things. Set out not to create an autistic character but a character like, say, Bobby, and Bobby happens to be on the spectrum.

I think it definitely has to work like this on some level, for everything. It certainly could be possible to "know" people without personally meeting them, but probably harder.

[storiteller]

For a non-fiction portrayal of someone on the autistic spectrum, I thought "Look Me in the Eye" by John Elder Robison (Augusten Burroughs' older brother) was very good and insightful. He does an excellent job describing what it is like to be in that headspace as both a teenager and adult.

In terms of fiction, the protagonist of Extremely Loud & Incredibly Close (the book version, I didn't see the movie) seems to be on the autistic spectrum, although it's never stated. Both the character and the book are weird in a dizzying way, so it's hard to know exactly what to make of the portrayal. Anyone else read that?

[Nick Kiddle]

//I liked "The Curious Incident..." as a novel. I'm not enough of an expert on autism to know if it's a valid portrait, and if I remember correctly the protagonist is never identified with any kind of diagnostic term.//

It doesn't prove much, but my little brother has Aspergers and felt a very strong kinship with the protagonist.

[Firedrake]

Drifting slightly away from the ASD/Aspergers side of things, I find it quite interesting how thoroughly "geek" has been appropriated over the last fifteen years or so. People now call themselves geeks because they carry iPads. It's been mainstreamed to the point where it's entirely meaningless, and I'm increasingly glad that I always insisted on being called a "techie" (originally, on the grounds that I had never bitten the head off a chicken and wasn't planning to start now).

I think that this sort of appropriation is simply how mass/pop culture gets new ideas: it lets other people invent them, then it perverts them into a new way of making suckers buy stuff. See also what happened to punk, and grunge, and...

[wychwood]

Elizabeth Moon wrote a difficult but fascinating near-future SF novel called "Speed of Dark", with an autistic protagonist and a plot which largely revolves around the discovery of a "cure" for autism and the ethics of such a thing.

Her son is autistic, and she certainly comes across as knowing what she's talking about; it doesn't resolve into easy answers, either.

[Rowen]

1) This goes with Big Bang Theory and Firedrake's comments on "geek." I don't like how OCD has become this "thing" in American culture and basically means this odd cross between "Don't touch my stuff" and "I refuse to use public bathrooms." The best example I have of OCD was when I was in college, I took a course that mixed art and Jungian pyschology, I think. I remember one woman wrote a children's storybook about getting ready for bed with OCD (which she had). Among other things, it included five trips to the bathroom, just in case.

2) I stopped watching House when he went to a mental hospital, and the portrayal of both the hospital. House would have been in an acute care setting which is VERY different from the long term care that they showed AND I'm getting sick of this One Flew Over the Cuckoo's Nest/Girl Interrupted view of mental health professionals.

3) I was pleasantly surprised with the musical Next to Normal, and it's treatment of the mental health professionals, ECT and (I can only sorta guess) bipolar disorder. They did up the dramatic factor of ECT. While amnesia is a complication, the type of amnesia the main character suffers was kinda over the top, but dramatic license and all.
http://en.wikipedia.org/wiki/Next_to_Normal

[Mira]

I found "Curious Incident" disturbing and heart-rending because it seemed so realistic to me - I thought it was hard to read but rang very, very emotionally true. (My brother's autistic, and my mom had a similar reaction to it.) When a work of art present a non-neurotypical character as a person, not a quirky plot device, and does not misrepresent the cognitive processes, I'm pretty OK with it. Not every autistic person is like the one in that book of course, it's a huge spectrum, and my brother isn't precisely like him either, but I think that Haddon was pretty responsible in his writing.

Other than that, it's hard for me to say. I'm honestly not sure how to evaluate issues I don't have personal experience with.

[anamardoll]

GET OUT OF MY HEAD!

I had to laugh, because I wrote a post on appropriation yesterday (though it won't go up until late August, if that makes any sense at all), and my feelings are that it's Really Complicated.

--

TW: Appropriation of American Indian Culture, European Colonization of the Americas

In my sheltered hyper-conservative religious upbringing, appropriated material was often the only exposure I had to new ideas. I didn't touch on this much yet, as I'm waiting for my actual movie deconstruction, but my ultimate example always being Disney's Pocahontas which is appropriative like WHOA, but was my first (and possibly only, prior to my 20s) exposure to a POSITIVE portrayal of pantheism, as well as one of my rare exposures to the CONTROVERSIAL IDEA that maybe European colonization of the Americas was less than the best thing ever.

MORE TW: European Colonization of the Americas Coupled With Callous Religious Prejudice

And I'm being totally serious. I went to private schools where the Christian textbooks talked about smallpox being God's chosen method for clearing out the natives to make room for his chosen people to settle. I get sick just typing that, but it's a part of my past. Disney's Pocahontas -- which was highly controversial in my church, but Mom and Dad caved since it was a "kid's movie" and it was just barely acceptable on account of being appropriative like whoa -- was my first exposure to a more balanced viewpoint, and it lit a fire in me that maybe what I'd been taught all those years was, pardon my French, bullshit.

So I'm definitely a testament that appropriative things can do good as well as harm. Complicated. :(

--

For disabilities and non-neurotypical portrayals, I'd like to see a protagonist in a multiple system that isn't a violent murderer. I keep thinking I should write one myself, but then I bump into the whole "I don't have experience with this, and therefore is this not appropriative?" I really don't know the answer to that, and I think it comes down to WHO you ask.

I think this is something that writers probably grapple with a lot, actually. I know I felt bad (and vowed to do better) when I was told that my secret lesbian character in "Pulchritude" didn't read as lesbian to several readers with more inside knowledge than I. (I identify as bi on the Kinsey scale, but.) I try to give Hollywoodians a pass if I think they tried their best, but that's dreadfully subjective and I recognize it comes from my usual tendencies to hand out cookies for trying.

[Froborr]

like to see a protagonist in a multiple system that isn't a violent murderer.

I read a deeply weird story once in which "multiples" were an accepted subculture with their own nightclubs and such, and there was a woman who found dating "singletons" boring so she tried to fake being a multiple, but then she had surgery to induce multiplicity, but she went back to being a singleton after a few months, so she went back to trying to fake it. I *think* it was supposed to be an allegory for LGBT issues, but to be honest I have *no idea* what it was trying to say, and for the life of me I cannot remember the title or the author's name.

[anamardoll]

@Froborr, wow, that seems a little... murky. I think I'm done with "this is an allegory!" works because it seems like a lot of marginalized issues don't map well onto other marginalized issues without causing... issues. o.O

(See the latest Reverse Racism! book I blogged about this week. Ick.)

[Rowen]

"in which "multiples" were an accepted subculture with their own nightclubs and such, and there was a woman who found dating "singletons" boring so she tried to fake being a multiple, but then she had surgery to induce multiplicity, but she went back to being a singleton after a few months, so she went back to trying to fake it"

I. . . have no clue how to process this. I mean. . .

Let me ask this question. When we say multiples verses singleton, are we talking dissociative identity disorder or something else? Googling multiple and singleton isn't really helping.

[Froborr]

I'm pretty sure it meant "dissociative identity disorder as understood by Joe Random Science Fiction Writer in the late 1970s/early 1980s."

[anamardoll]

@Rowen, yes, DID or MPD. "Multiples" moves away from the emphasis on "disorder".

[Rowen]

@Froborr,

Do you remember how said author pulled this off? I mean, it's pretty rare in the general population, and tends to have a lot of other issues that go a long with it, including unexplained amnesia regarding the other personalities. I getting really stuck in the idea that a nightclub subculture could arise from that.

@Anamardoll

Thanks!

[Froborr]

In the story, each multiple had one personality, usually a child for reasons that I can't recall (if they were ever stated), that could learn to monitor the actions of the others, and be called forward when they needed to be remembered. Also IIRC there were ways of inducing or suppressing a switch of personalities.

Please note that I am not putting this forward as an example of a good depiction of a non-neurotypical person, just as an example of a story where multiple systems are not automatically axe murderers.

[Brin]

Do you remember how said author pulled this off?

You can find out yourself, if you like.

[Froborr]

Wow, Brin. I'm impressed you managed to find it based on so little, but that's the story!

[Brin]

I remembered reading it and specifically which site I read it on. With that it was easy.

[Anonymus]

If it was posted on Astrea's site, then I doubt it's an allegory for some other minority group. *reads*

Interesting. I don't think it's an allegory and I don't think it's trying to make a political point, but then fiction is best when it's not a polemic. I think it's a nice story.

[Michael Mock]

I'd just like to second wychwood's recommendation for Speed of Dark, which I thought was a very good portrayal of ASD.

[cjmr]

I can't speak as to the accuracy of the portrayal in Speed of Dark, I just thought it was an excellent book!

[Charlie Weierstrass]

Indeed one has to be careful in talking about things like autism and how it is represented. It’s usually more complicated than it looks. For example, Autism Disorder is actually only one of several Pervasive Developmental Disorders (Autism Spectrum Disorders) according to the Diagnostic and Statistical Manual of Medical Disorders. You also have Asperger’s Disorder, Rett’s Disorder, Childhood Disintegrative Disorder and Pervasive Developmental Disorders – Not Otherwise Specified (which includes disorders such as atypical autism). If you look at material prepared for those who test and work with children you find that there are basically three causes of learning difficulties. Before one even considers diagnosing a child as, for example, Learning Disabled, you have to eliminate environmental (e.g. an abusive home life) or physiological (e.g. impaired vision) factors. The definition of Learning Disabled is not even the same from country to country. It also seems to be the case that someone with Autism Disorder may have some behavioral traits in common with someone suffering from, say, Reactive Attachment Disorder. However, the latter, by definition, is different from the Pervasive Developmental Disorders, and is caused by environmental factors.

I read Donna Williams’ first book, ‘Nobody Nowhere’ in 1992; it was an autobiographical account of growing up as an autistic child. I have since read that there is now some debate about whether Williams was misdiagnosed as autistic. One can’t quantify things like autism the way one can quantify the luminosity of a star or the fifth decimal place of a cyclic or transcendental number. Biological entities such as humans are incredibly complex and adaptable and the way they feel and think can be subtle and unpredictable (and marvelous). One thing that seems to be clear is that it is ill-advised to write about any disorder unless one has experienced it yourself, or one has lived with someone who has direct experience with the disorder.

As a sidebar, some have criticized the use of the term ‘disorder’ and prefer the term ‘syndrome’. Some have also had a problem with the term ‘learning disability’. In conversation they will often refer to the children diagnosed as ‘learning disabled’ as ‘alternate learners’ since one of the aims in the instruction of such children is to modify their learning techniques in order for them to succeed in the real world.

[Matthew]

Her name, Temperance Brennan, is similar enough to "Temple Grandin" to cause me to suspect that the latter real person provided some inspiration.

No, the television show is based on a series of books by Kathy Reichs, who is also a forensic anthropologist and who was the primary inspiration for the main character. The interesting thing is that in the novels, the character of Temperance Brennan isn't socially awkward at all; she likes to go on dates, barbecue with family, go shopping with friends, etc. and she just happens to deal with really morbid stuff on the job.

On the television show, it's suggested that her "hyper-logical" personality isn't a developmental disorder like Asperger's syndrome, but rather a coping mechanism to deal with abandonment issues from childhood.

[storiteller]

Indeed one has to be careful in talking about things like autism and how it is represented. It’s usually more complicated than it looks.

My mom works regularly with a number of children on the autistic spectrum and the variety is as much as it would be within any group of children. She's had autistic spectrum kids who are nearly completely uncommunicative to children who learn quickly but have major issues with specific social cues. Even within one kid, his or her capabilities can greatly vary from day to day.

In conversation they will often refer to the children diagnosed as ‘learning disabled’ as ‘alternate learners’ since one of the aims in the instruction of such children is to modify their learning techniques in order for them to succeed in the real world.

From what I know, "learning disabled" generally doesn't apply to people on the autistic spectrum in the way it applies to children with Down's syndrome, for example. Instead, being on the autistic spectrum is a different combination of methods of thinking and understanding the world rather than a low IQ. These methods of thinking can severely limit communication or understanding of social cues, but they're not the same as being able to learn well or not. Autism can be coupled with more traditional learning disabilities, so they also are sometimes mistaken for each other. As you said, some autistic children can be taught social management and communication skills that respects their unique thinking style while helping them cope better in society.

Personally, I've never been diagnosed as being "on the spectrum," but always struggled with reading social cues. I know that I've found a number of tactics - like pretending I'm interviewing someone if I find myself dominating the conversation - that have helped a lot without changing my fundamental thought patterns, so I can see how they could help others as well.

[Leum]

...AND I'm getting sick of this One Flew Over the Cuckoo's Nest/Girl Interrupted view of mental health professionals.

Very much this. I've written about my experience on a psychiatric ward before here, and it was the opposite of nightmarish. I know not all wards are as good as the one I was on, but I think the portrayal of psych wards in the media both discourages people from going to them when they need it, and makes it easier for sub-par wards to remain sub-par because they're being compared to the media portrayals rather than legitimately good wards.

[Rowen]

Leum,

I worked as an Occupational Therapy technician on a psychiatric ward for a while, and it's one of the most fascinating and cool jobs I've ever had. For one, there was the constant interaction with patients, and having worked in a rehab/acute care setting, I found I liked the variety that the psych unit had, both in staff and in patient care. Another thing that was REALLY awesome is that we had been transitioning from more long term to acute, so many of our art projects weren't designed for someone with a three day stay. SO, the therapist and I decided to have a bunch of projects that were in varying stages of being done, which meant I learned how to warp a loom, and pour slip molds (so that we'd have some already fired and ready to be glazed).

I will fully admit that I found a bunch of unopened oil paints that no one was using and we couldn't use, since we didn't have a well ventilated area and got to take them home.

One of the sad things was that the Head Nurse of the unit saw no difference between occupational therapy and recreational therapy, and tried leaning on the doctors to get us transfered to another unit, and thus make clinic just a rest area with ADL equipment.

[chris the cynic]

What is occupational therapy?

All I know of it is that when I was little they took me out of classes to do it and it seemed to involve things other people seemed to have no problem with like:
-How to catch
-How not to miss the doorway (shoulders: they stick out, and get caught on things, like door frames, walls, and other people.)
-How to balance rather than fall down.

Doubtless there was more to it than that, but my memory has never been very good.

[cjmr]

OT can also include fine motor skills practice--after my grandfather's stroke his occupational therapist helped him work his way back up from barely being able to hold a pen, to being able to write with a fairly decent print, he also learned to knit in OT, and he and my grandma then knitted together, where previously it had just been her. (I *think* the learning to knit was part of teaching his hands to coordinate motions.)

[kisekileia]

I would generally NOT accept the word of parents of autistic kids about whether a piece of media portrays people on the autism spectrum accurately. There is an extensive history of parents of autistic kids acting as if they, rather than autistic people themselves, are authoritative regarding the autism spectrum, often while also dehumanizing their own autistic children. I don't think any of the people here fall into that category, but as a person on the autism spectrum, I am automatically suspicious about neurotypical parents of autistic kids who speak with too much confidence about what the experience of being autistic is like.

I haven't read The Curious Dog in the Night-Time, or most of the other examples given, but I'm very familiar with the portrayal of Temperance Brennan on Bones, and I think she's a great example of a positive portrayal of Asperger's.

(Warning: spoilers for the end of season 3 of Bones in the following paragraph.)

I can't cite sources for this, but I have heard that the producers of Bones have confirmed that both Temperance Brennan and Zach are intended to have Asperger's. I'm less than thrilled that Zach ended up collaborating with a serial killer, but that was handled about as well as it could have been.

One area where I do think the portrayal of Temperance Brennan falls flat a bit is that, while she's female, her personality is close to the stereotype of Aspergers, which is much closer to how men with AS usually present than to how women with AS usually present. AS men are more likely than AS women to seem robotic and unfeeling, in my experience. I know personally, I wear my heart on my sleeve and am extremely affectionate with people I fully trust, which is totally contrary to the AS stereotype but far from unheard of among women with AS.

@Eva-Lise, I am also an exception to your statement about people on the autism spectrum dressing fashionably. I wouldn't say I'm a fashion maven, but I wear pretty clothes that are reasonably close to what's in style and that look good on me. I dress for appearance as well as comfort. However, I'm pretty high-functioning, and my sensory issues don't limit my clothing choices that much, although there are a few things (high heels for everyday wear, really high heels for any purpose, tags in underwear, and skirts in winter) that I find uncomfortable and therefore avoid. The way in which my sensory issues affect my clothing choices most is that I crave bright colours, and therefore wear a lot of them. My favourite colour is yellow, and I have been known to wash an entire laundry load of yellows.

Also, Chris, holy crap were you ever lucky to get OT. I'm still completely hopeless with gross motor skills, to the point where I can't play most sports at all, because I desperately needed OT and never got it. Not only that, because the other kids made fun of me for being uncoordinated, while the teachers unintentionally gaslighted me by telling me I was doing fine when I knew I wasn't, phys ed was so horrible--bordering on traumatizing--that I am basically triggered by almost any attempt to participate in group physical activity. I still bitterly resent my childhood phys ed teachers for not figuring out that something was wrong--it really was very obvious--and sending me to get assessed and get OT.

[Rowen]

Chris,

Lemme see if I can explain it. Think of "occupation" in occupational as referring to tasks, not work. So, what an occupational therapist does is work with the patient on various skills, not unlike a physical therapist, but with a different modality.

AH, think of it this way. Let's say you have a hand injury. A physical therapist will do exercises with you to recover strength and dexerity. An occupational therapist will work with you to make sure you're able to tie your shoes and comb your hair and turn door handles, etc.

[Marc Mielke]

There was a very good episode of FRINGE dealing with an alternate-universe version of one of the supporting characters (Astrid). Astrid's alt was autistic as well as some kind of mentat (AFAIK more due to alt-universe tech than her autism). The actress based her portrayal on her RL autistic sister, who she also wrote a rather touching comic about.

Let me see...http://www.jasikanicole.com/ ,it's under 'Artwork' and titled 'Sedi' if anyone is interested. She is kind of a neat artist in general.

[Wysteria]

So, if I'm following correctly, a therapist recommended a set period of crafting every day would come under the heading of recreational therapy? Huh.

[Froborr]

Hmm... when I was last involved in such things, which was over a decade ago, recreational therapy was "we turn you loose in the crafts room and see what you do" or "we hand you fluffy toys and board games to practice interacting with other people"; occupational therapy was "we send you to the crafts room to do a particular project with the intent of imparting particular skills."

I read an article yesterday about a New Zealand group that's developed a video game designed to help teenagers cope with depression; would that be recreational (since it's a game) or occupational (since it's designed to teach particular skills without you noticing you're learning them)?

[Rowen]

Wysteria,

Depends on the desired outcome. Take crochet. From a recreational therapy standpoint, it's about the . . . well, recreating. It's about the calming effect, and you doing something you enjoy, and using that to help you interact with other people or creating a soothing aura for yourself. From an occupational therapy standpoint it's about fine motor control of your hands, and the ability to mentally focus on the repeating nature of the craft and possibly the mental capacity to process the pattern, should you be doing more then just a single crocheted square.

[Rowen]

Froborr,

Hrm. .. I'd say it depends on the modalities used. Do you have a link? My mom's an occupational therapist, and I can ask her.

[Froborr]

@Rowen: I initially misread "crochet" as "croquet" in your comment. It was confusing, but pretty funny.

Link: http://www.rawstory.com/rs/2012/07/31/researchers-use-role-playing-fantasy-video-game-to-treat-teen-depression/

(Warning: Article reads suspiciously like the only source was a press release and *maybe* a phone call to the company's PR person, so in all probability the game either isn't anywhere near as effective as the article suggests, is not remotely fun, or both.)

[cjmr]

Rowen,

I know people hate being asked, "Hey, can you fix me?" on the internet, but...my hands/fingers/wrists have lost a LOT of functionality in the last 10 years. (Typing is one of the few things I can do without pain/discomfort--playing the piano, knitting, crocheting, anything repetitive like that now HURT, either while I'm trying to do them or for hours afterward.) I've also lost a LOT of range of motion in my wrists, but doctors basically ignore it because what I have left is within the 'normal' range. Do you have any suggestions for a way to get across to a medical professional that while my range may be 'normal' it isn't normal for me, and is in fact hampering my life and possibly contributing to my depression?

[cjmr]

(Sorry, apparently I should be asking Rowen's mom that question.)

[sarah]

I have a few students with ASD, all female (I work at an all-women's school), and what's interesting to me is how varied ASD presents itself in each of them. I don't really want to talk specifics about my students, but it seems that there's a wide spectrum of how one could write or portray an individual with ASD.

@cjmr: I know that there's a difference between OT and PT, but I thought range-of-motion fell more into PT? Oddly enough, my experiences with PT have happened because I have *too* much range in my shoulder.

[Mike Timonin]

Douglas Coupland's novel Jpod features a group of characters who are all on the spectrum. As I recall, the bits of the book that were really good were really good - but sadly offset by the bits that were awful. Like the author insertion. Microserfs, which is a much better book, is much less explicit about the presence of Aspergers in the population of characters, but I think it's probably there if you look for it.

[Rowen]

Sarah, it's a mixture of both.

Um, CJMR, I don't know, but after I injured my back when I was a ballet student, I had to brow beat a couple doctors because the didn't understand that I was having trouble jumping on one foot. The response was "why do you need to do that?" Including the sports doctor.

[cjmr]

Range of motion for hands appears to be a category into and of itself. I've been in PT for ankle, knee, and back injuries and husband for a shoulder injury, at four different PT places, and NONE of those facilities did wrists/hands/fingers.

At this point my problem is being taken seriously. The sense I get from the medical profession is, "If you can function well enough to work and do daily tasks, why am you complaining you can't participate in recreational activities? Oh, and take more ibuprofen."

[cjmr]

Sorry about the major grammar fail!

[Rowen]

Are you apart of Ravelry?

https://www.ravelry.com/account/login

There might be someone on there who's having/had a similar problem, as well, and/or might have suggestions on doctor's to visit who are more. .. craft savy.

Last question based on my totally non-medical school knowledge, but are you doing other range of motion exercises?

[kisekileia]

cjmr, might it be helpful if you explained that the activities you currently can't do are necessary to treat your depression? Or do the doctors not get it even when you tell them that?

[cjmr]

Rowen,

I have an account on Ravelry. I wonder if I can remember the login. I've only ever looked for patterns, not participated in the discussion forum.

I do stretches to try to improve my range of motion and practice the piano when I have the time to do so (and time to have the obligatory 2 hours of pain afterwards). The exercises aren't currently supervised by a professional, because I can't get a referral, so I'm doing the ones my piano and violin teachers gave me to do back when I was a teen.

Kisekeleia,

I don't know. I don't think I've said that in so many words. I've know I've said things like, "I can't do the things I really enjoy doing because they hurt" and "I can't participate in activities that make me happy/make me feel good about myself" but I don't think I've ever said "I feel that not being able to do these things I love is contributing to my depression".

And I get to start over AGAIN with a new primary care doc, because my previous one left the practice. Moving and/or having my primary care doc leave the practice 3 times in 2 years can't be helping the situation any.

[kisekileia]

"Contributing to depression" might be what the docs need to hear to take it seriously. The statement that the issue contributes to a documented medical problem--depression--is something that's more likely to make the doctor register it as "okay, this is actually affecting cjmr's health" than statements that frame it exclusively in terms of quality of life, I think. I hate it when doctors are dismissive, but they do tend to take things more seriously when the things are quantified in terms of medical problems rather than just "this hurts" or "I can't do this thing that makes me happy," unfortunately.

[kisekileia]

Also, cjmr--can you not see a physiotherapist without a doctor's referral in the U.S.? Here you can just walk into their office and book an appointment.

[cjmr]

Theoretically, I can see any specialist that takes my insurance plan, at any time, self-referred. (We pay more for that insurance plan than for the other one offered by husband's employer which is a true HMO.) In reality, most specialists in this area seem to have very few appointment spaces for self-referred patients.

[cjmr]

Oh, and you have to fight less with the insurance company over payment if you have a referral with attached diagnosis code from your primary care doc, as well. I need to make my annual 'well woman' appointment.

[kisekileia]

Argh. That's a pain. :(

[Dragoness Eclectic]

One area where I do think the portrayal of Temperance Brennan falls flat a bit is that, while she's female, her personality is close to the stereotype of Aspergers, which is much closer to how men with AS usually present than to how women with AS usually present. AS men are more likely than AS women to seem robotic and unfeeling, in my experience.

Oddly, that's what works for me, because Temperance Brennan is very much me, especially in my younger days. Except she has better fashion sense--I have none whatsoever.

I also suspect that Temperance has something that may be getting conflated with Asperger's these days: she's a high-end genius among normal intelligence people, and perennially doesn't get *why* other people overlook what is incredibly obvious to her. Been there, done that, am married to one.

[Timothy (TRiG)]

One of the people in my Toastmasters club is an occupational therapist. But the club is on summer holidays right now, so I'll not see him again till September.

TRiG.

[kisekileia]

I know in my case, my Asperger's characteristics were mistaken for the natural results of very high intelligence. I think it's more that Asperger's symptoms used to be blamed on genius than the other way around. Extremely smart people not getting why others overlook things that are obvious to them is something that I experience due to my intelligence as well, although my boyfriend (who is CRAZY smart--as in, was reading Shakespeare for fun at eight) experiences this even more.

[Steele]

I'm a writer, so perhaps I'm biased on one side of this.

On the other hand, I am on the autism spectrum, so perhaps I'm biased on the other side.

Ultimately I'm biased on my side. From the perspective of writing, I don't think it matters if the writer has actual writer has a disorder. I think it's more important that a writer has an understanding of it. That the writer goes out of his or her way to learn what exactly this experience is, is far more important than whether or not they've had it.

It's an important question, but I think that ultimately it's not a question of what experience the person has had. It's a question of how respectful the writing is.

I'm not a Native American, but I know that I don't like Commander Chakotay in Star Trek Voyager. It's disrespectful. But it's not disrespectful to Native Americans because Chakotay's writers aren't native americans. The portrayal is disrespectful because Chakotay's writers refused to make any sort of effort to give his tribe a consistent portrayal. He basically got every native american stereotype thrown onto his character. Giving dream catchers to a grown woman, helping the captain find her spirit animal/guide and every other 'that's native american' thing you can imagine.

I half expect him to build igloos and sacrifice buffalo on them to Quetzelcoatl, the way that the writers seemed to take a "Just make sure it's the right hemisphere" approach to his heritage.

But had there been care in the character, had there been an effort to make Chakotay be from one single tribe, had there been a serious amount of research put into what Chakotay WAS, what his heritage was, had they consulted with tribe members and tried to find out what they expected...

I don't think the character would have been offensive. It would have been a positive portrayal of a Native American showing that he was able to keep his cultural heritage going centuries in the future.

I don't think that you should have to look at who wrote something to determine if it's acceptable or not. The work should stand alone. If the only objection you can find to a work is its author, then you have a pretty strong work on your hands, and I think if you need to look up the author's biography to determine if you're alright with the story, you're looking for something to be offended by.

[cjmr]

If every episode of ST: V had written by the same team of writers, Chakotay would have been a more consistent character. But that's never been the case with Star Trek.

[Steele]

There's such a thing as a Series Bible. It's where you put continuity, and character concepts. Trek has always been good at maintaining theirs.

The Voyager Bible doesn't have anything about what tribe Chakotay's from. It refers to his people, their ceremonial calendar, and a vision quest. Not once does it give us any idea what the hell His People believe, aside from that his people feel that people are abandoning their traditional ways. What those ways are, aside from vision quests, is entirely unclear.

What a show messes up can show you something about what the writers feel is important. And the Voyager bible shows that Voyager's writer and creators didn't think that actually having an idea of what someone who is dreadfully concerned with tradition's traditions are.

They clearly didn't think Native American's beliefs actually mattered, as long as they were vaguely-defined 'traditional'