tag:blogger.com,1999:blog-5794893825407092443.post3677432384862904215..comments2023-12-29T04:36:07.964-04:00Comments on Square 8: Angry Aspies, Please Go AwayBevhttp://www.blogger.com/profile/06766614739853100172noreply@blogger.comBlogger85125tag:blogger.com,1999:blog-5794893825407092443.post-10457132922079359562011-11-16T21:40:00.153-04:002011-11-16T21:40:00.153-04:00MJC's book seems quite good, although there is...MJC's book seems quite good, although there is a lot of controversy about his opinions on things & relationship with Autism Speaks etc. <br />It also seems MJC does not struggle with comorbid conditions such as depression which can make comparisons with Einstein etc even more depressing.Xanthe Wysehttps://www.blogger.com/profile/11528666097533701258noreply@blogger.comtag:blogger.com,1999:blog-5794893825407092443.post-64865897324431253772010-10-03T01:39:37.533-04:002010-10-03T01:39:37.533-04:00(continued from part one)
Now switch over to auti...(continued from part one)<br /><br />Now switch over to autism where it really is one condition, not several. But after watching the infighting in the diabetes community, I think it might be human nature for a diverse group under one name to experience division and some parts of the group exploiting other parts of the group for gain, etc.<br /><br />All of which is the long way around of say that yes, I think that one part of the community (I cannot predict which part) will end up having a dominating voice and coloring people's perceptions of what autism "really" is and confusing people about what autism "really" is.<br /><br />And I agree that we should cut it off before it starts and work toward autistic unity and no shade of the spectrum dominating the discourse. Or the funding. Or the public image. <br /><br />I don't want to see anyone losing funding because some other group in the spectrum got funding. I think we need it at all levels. I know that I could sure as hell use some funding to get proper counseling to help me understand why I always got fired two weeks after getting hired and how I can prevent that happening now that I'm working so hard on getting a degree that I would really like to be able to use in the workplace. <br /><br />I just need the proper nudge but I can't afford the local asperger's counselor and my medicaid won't pay for her so I'm going to go into my job hunt with no clue as to what it is that I have always done wrong on the job, all my life, and no idea how to try to fix it so I can (hopefully) keep this one.<br /><br />I think that's just as valid a need for funding as someone who needs a day worker to come to their home every day to make sure they eat or someone who needs an early intervention therapist to come work with their children. I don't want to get "thrown away" because I'm an adult with "high functioning ability." And I don't want any one else to get thrown away! We're all valuable, we're all human beings, and we all need some kind of help from society. <br /><br />I like what Joel says on his blog about how *every body* needs some societal assistance. Some people would starve to death if someone didn't grow food and someone else didn't ship it to the grocery store. Why is a grocery store more important than speech therapy, a day worker, or career therapy for an adult? Just because more people need a grocery store than speech therapy doesn't make one person better or more deserving of society's assitance than another!<br /><br />So I agree with CrouchingOwl: the most important thing is to band together for ALL of our rights and needs. The wedge is already there; we can't let something like a name change drive that wedge home and divide our community completely.unstrangemindhttp://unstrangemind.wordpress.com/noreply@blogger.comtag:blogger.com,1999:blog-5794893825407092443.post-71688099800780728362010-10-03T01:38:10.331-04:002010-10-03T01:38:10.331-04:00CrouchingOwl said: "We don't know yet if ...CrouchingOwl said: "We don't know yet if one part of the community will end up dominating the voice and image of the diagnosis. If any one group does, the others will suffer. Instead of taking sides in a fight over who will be forgotten, we should be positioning ourselves to present a nuanced and balanced view to the rest of the world."<br /><br />I'm pretty sure that this is what we will be up against when PDD-NOS and AS and autism are all under one name. I say so because of my experiences in the world of diabetes.<br /><br />There are several kinds of diabetes but two major ones that people know about: type 1, which typical starts in childhood, and type 2, which typically starts in adulthood. Most diabetics (I'd have to look up exact numbers, but something like 80%-90% off the top of my head) are type 2 diabetics.<br /><br />Both types experience difficulties from being under the same name. Type 1 get upset about being lumped in with the stigma of being fat and causing your own disease by bad eating and laziness. The whole thing is more complex than that, but since most type 2 are obese and since type 2 can sometimes be controlled through diet and exercise (type 1 requires insulin and type 1 diabetics tend to be very lean) many news stories unintentionally (or intentionally -- I'm not sure) portray "diabetes" (meaning type 2) as a disease of excess, a disease of overeating, a disease of laziness, etc. <br /><br />But, generally speaking, the type 1 community is more strongly represented by its members. Most of the big diabetes support groups online are heavily dominated by type 1 diabetics and a type 2 diabetic can feel edged out and even unwelcome. Additionally, parents of type 1 are the strongest lobbiers. They can get money more easily because people are more willing to give money to children's causes and to causes that don't have the stigma of being caused by the sufferer. <br /><br />Meanwhile, type 1 organizations count all diabetics and capitalize on the "diabetes epidemic" news stories to get money for their smaller pocket of the diabetic community. Often, even type 2 diabetics are convinced to contribute to type 1 diabetic causes, not fully realizing that their donations won't help themselves personally, sometimes not even realizing that the organization to which they're donating is only for the other disease that they don't have.<br /><br />I've often said that life would be easier (at least for me) if type 1 diabetes and type 2 diabetes (which are honestly two different diseases) had two different names.<br /><br />(continued)unstrangemindhttp://unstrangemind.wordpress.com/noreply@blogger.comtag:blogger.com,1999:blog-5794893825407092443.post-19138908359367246632010-10-03T01:37:07.824-04:002010-10-03T01:37:07.824-04:00CrouchingOwl said: "We don't know yet if ...CrouchingOwl said: "We don't know yet if one part of the community will end up dominating the voice and image of the diagnosis. If any one group does, the others will suffer. Instead of taking sides in a fight over who will be forgotten, we should be positioning ourselves to present a nuanced and balanced view to the rest of the world."<br /><br />I'm pretty sure that this is what we will be up against when PDD-NOS and AS and autism are all under one name. I say so because of my experiences in the world of diabetes.<br /><br />There are several kinds of diabetes but two major ones that people know about: type 1, which typical starts in childhood, and type 2, which typically starts in adulthood. Most diabetics (I'd have to look up exact numbers, but something like 80%-90% off the top of my head) are type 2 diabetics.<br /><br />Both types experience difficulties from being under the same name. Type 1 get upset about being lumped in with the stigma of being fat and causing your own disease by bad eating and laziness. The whole thing is more complex than that, but since most type 2 are obese and since type 2 can sometimes be controlled through diet and exercise (type 1 requires insulin and type 1 diabetics tend to be very lean) many news stories unintentionally (or intentionally -- I'm not sure) portray "diabetes" (meaning type 2) as a disease of excess, a disease of overeating, a disease of laziness, etc. <br /><br />But, generally speaking, the type 1 community is more strongly represented by its members. Most of the big diabetes support groups online are heavily dominated by type 1 diabetics and a type 2 diabetic can feel edged out and even unwelcome. Additionally, parents of type 1 are the strongest lobbiers. They can get money more easily because people are more willing to give money to children's causes and to causes that don't have the stigma of being caused by the sufferer. <br /><br />Meanwhile, type 1 organizations count all diabetics and capitalize on the "diabetes epidemic" news stories to get money for their smaller pocket of the diabetic community. Often, even type 2 diabetics are convinced to contribute to type 1 diabetic causes, not fully realizing that their donations won't help themselves personally, sometimes not even realizing that the organization to which they're donating is only for the other disease that they don't have.<br /><br />I've often said that life would be easier (at least for me) if type 1 diabetes and type 2 diabetes (which are honestly two different diseases) had two different names.<br /><br />(continued)unstrangemindhttp://unstrangemind.wordpress.com/noreply@blogger.comtag:blogger.com,1999:blog-5794893825407092443.post-57603751281003973092010-09-29T16:54:06.034-04:002010-09-29T16:54:06.034-04:00I'm having quite a bit of a hard time. I was r...I'm having quite a bit of a hard time. I was recently Dx'd as having asperger's and was told it was a milder form of autism. I have no problem with the idea, or label, of having a milder form of autism. I've had serious problems, but no language delays. I did the feces smearing when I was 9, I wasn't fully toilet trained until I was in 5th grade (both daytime and night time urinary incontinence). I have trouble with balance, coordination, and am sensitive to certain types of sensory input. Bright or flashing lights cause me to be very disoriented. Many types of sounds are actually painful, that other people don't seem to notice. Light touching is intolerable, while firm touching doesn't bother me. I can't organize anything; my mother still has to come help me with my apartment (I'm 32!), because when I try I get confused and overwhelmed and end up curled up in a ball on the floor sobbing, because I SHOULD be able to do it by myself at my age. The same goes to figuring out bills and complex paperwork. I have trouble tolerating change of any kind (as a child change equaled a massive tantrum, and it is still difficult, though I handle it better). I've no idea how other people figure out what's going on with another outside of the content of their speech, unless the other person is smiling, laughing, crying, yawning, or yelling (those ones I get). Example: without those, I can't tell if a person is angry, pensive, tired, or sad. This causes misunderstandings. I often make people angry by saying the worst thing at the worst time, and rarely understand why what I've said is wrong. I've had to memorize a lot of social rules I don't understand. My problem is that, while I fit the criteria for asperger's, I fear I won't fit the revised criteria (it looks like I'll just barely fall outside it). I've had severe trouble gaining and keeping a job, and have now begun working with vocational rehab to move towards real independence. Since I fit the asperger's criteria, I can get help now. When they change it, if I don't fit the DSM-5 criteria, I'll loose all the help and will be back to life without any available services. No chance at independence-- earning a living on my own without needing my parent's financial and practical support. I will be back to having no chance to develop pride in myself, since employment is something I'll only be able to achieve with help. Loosing this chance would be devastating to me. Completely.JJnoreply@blogger.comtag:blogger.com,1999:blog-5794893825407092443.post-68193568927544910262010-09-29T16:45:56.857-04:002010-09-29T16:45:56.857-04:00I'm having quite a bit of a hard time. I was r...I'm having quite a bit of a hard time. I was recently Dx'd as having asperger's and was told it was a milder form of autism. I have no problem with the idea, or label, of having a milder form of autism. It makes a lot of sense. I don't understand the idea of asperger's people thinking they're better than other autistics, or whatever their problem with that is. That just is ridiculous to me. I've had problems that are pretty severe, but with no language delays. I did the feces smearing when I was 9, I was not fully toilet trained until I was in 5th grade (both daytime and night time urinary incontinence, and, honestly, I still sometimes have problems with that). I have terrible trouble with balance, coordination, and am very sensitive to certain types of sensory input. Bright or flashing lights cause me to be very disoriented. Many types of sounds are actually painful, that other people don't seem to notice. Light touching is intolerable (like gently stroking my arm), while firm touching doesn't bother me. I can not organize anything, my mother still has to come help me with my apartment (I'm 32!), because when I try I get confused and overwhelmed and end up in tears, curled up in a ball on the floor, because I SHOULD be able to do it by myself at my age. The same goes to figuring out bills and any type of complex paperwork. I have serious trouble tolerating change of any kind (as a child and teen, change equaled a massive tantrum for me, and change is still seriously difficult, though I handle it better). I've no idea how other people figure out what's going on with another person outside of the content of their speech, unless the other person is laughing, crying, yawning, or yelling (those ones I pretty much get). Example: without those things, I can't tell if a person is angry, pensive, tired, or sad. This causes serious misunderstandings, and drives people nuts. I seem to consistently make people angry by saying the absolute worst thing at the worst time, and rarely understand why what I've said is wrong-- I've had to memorize a lot of social rules, but don't understand them. I could go on, but I already have long enough. My problem is that, while I fit the criteria for asperger's, I fear I won't fit the revised criteria (it looks like I will just barely fall outside the criteria). I've had severe trouble gaining and keeping a job, and have now begun working with vocational rehab to move towards real independence. Since I fit the asperger's criteria, I can get help now. When they change it, if I don't fit the DSM-5 criteria, I'll loose all the help and will be back to life without any available services. No chance at independence-- earning a living on my own without needing my parent's financial and practical support. I will be back to having no chance to develop pride in myself, since employment is something I'll only be able to achieve with help. Loosing this chance would be devastating to me. Completely.JJnoreply@blogger.comtag:blogger.com,1999:blog-5794893825407092443.post-83560144494100900082010-04-27T14:27:50.788-04:002010-04-27T14:27:50.788-04:00I agree. Thank you.I agree. Thank you.Witchymamahttps://www.blogger.com/profile/01979551771681498293noreply@blogger.comtag:blogger.com,1999:blog-5794893825407092443.post-71977906259794225562010-04-21T04:48:00.853-04:002010-04-21T04:48:00.853-04:00I have to agree with Old Rockin' Dave on this....I have to agree with Old Rockin' Dave on this. Will getting rid of Asperger's mean that some will got without diagnosis and not get the services they need? And to add my own two cents -- should those with autism cheer for the removal of Asperger's from the simply because some Aspies have an elitist attitude? What bothers me the most about the post and the various comments is that on one hand the autistics are accusing the Aspies of being elitist while on the other reflecting a prejudicial view towards Aspies themselves. Inclusion means both sides must learn to get along. We should not hate all Aspies simply because a handful of outspoken ones choose to behave like uneducated jerks. Let's be better than those jerks.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-5794893825407092443.post-10416251258865260432010-03-19T17:35:37.075-04:002010-03-19T17:35:37.075-04:00I know I'm coming late to this dance but here ...I know I'm coming late to this dance but here I am anyway. I am an Aspie, one dismayed over the change, not angry. I don't hold with Michael John Carley's reasons but I have reason of my own.<br />I was first diagnosed at age 50, self-diagnosed, really. I had never heard of Asperger's Syndrome before, but it made sense out of my life almost instantly and in a way that had never happpened before. I certainly knew about autism, having an autistic nephew, but without the diagnosis I would never have realized how much we two have in common. But without the distinction, I doubt I would have recognized myself. I have no doubt that if the proposed change had been in place it would have been hedged about with may have's, sometimes manifests as'es, does not always require for diagnosis'es, etc., and I would have wound up buried under a thicket of exceptions. Instead, there I was, in crisp black and white.<br />How much we have in common, yes, but we are different in many ways. I cannot see our differences as being between "low-functioning" and "high-functioning." The term "spectrum" itself implies that some people with autism are more autistic than others, more "authentically" autistic. I do not see us as being at different points on a spectrum so much as being in subsets of the same class. Let's say that we are both rectangles. There is no rectangle spectrum. There is no rectangle that is more rectangular than any other rectangle. There are squares and rhombuses and parallelograms and irregularly-sided rectangles, all of them different but all falling within the same class of polygon (Of course, my kids would argue that I am a square.). And there are differences in the characteristics that predominate among "Kanner's autistics" and "Asperger's autistics" and all the other definitions that fall on the so-called spectrum. <br />I understand the goal of trying to make services more available to all children on the "spectrum", but I think we are throwing out the baby of useful distinctions with that bathwater.Old Rockin' Davenoreply@blogger.comtag:blogger.com,1999:blog-5794893825407092443.post-43787492175750513942010-03-06T17:25:08.198-04:002010-03-06T17:25:08.198-04:00I just found your blog. I'm the mother to a re...I just found your blog. I'm the mother to a recently diagnosed autistic 3.5 year old who is the light of my life. Reading your posts, old and new gives me such peace, knowing that there are so many adults out there fighting for understanding and acceptance of who my child will be for the rest of her life. <br />When we tell people she's autistic, I get reactions from "oh really? I thought you didn't vaccinate?" and "oh god. I'm so sorry." to "oh. that's interesting, how can I support you and Ruby?" (the last one is clearly my favorite) My child was not given a death sentence, she's just different. Vaccines don't cause autism (although I do think that in some kids they trigger the regression that wakes up parents). My child is amazing, perfect... she's just different. and it's my job to figure out how to help her achieve her dreams. <br />She's 'high functioning' and people say things like 'oh good, maybe she'll get to live a normal life' or maybe it will turn out to just be aspergers. WTF? what is normal? normal is what makes her happy, fulfilled, complete. <br />Anyway... my comment really doesn't relate to this specific post, and seems all over the board (maybe I had too much coffee). I just wanted to thank you for your words, your honesty, for being who you are. <br />Now I'm gonna go dig for worms with my awesome kid. <br />Korin<br />www.mamazen.typepad.comkorinhttps://www.blogger.com/profile/00582076144546317577noreply@blogger.comtag:blogger.com,1999:blog-5794893825407092443.post-64051316677249353182010-02-23T15:04:36.693-04:002010-02-23T15:04:36.693-04:00I think it is kind of sad that well-known people w...I think it is kind of sad that well-known people with Asperger's are basically publically saying that they wouldn't want to be thought of as people with autism. It seems mean to me! I have Aspergers and lots of times I have found it simpler to say, "I have autism" because more people know what autism is and because autism sounds less like "ass-burger " Maybe the opposite is true... using the word "autism" to cover everyone on the spectrum could mean LESS stigma for people who have always been called autistic!Nickihttp://littlebearsworld.typepad.comnoreply@blogger.comtag:blogger.com,1999:blog-5794893825407092443.post-88372450898719007302010-02-21T11:35:40.648-04:002010-02-21T11:35:40.648-04:00Bev: Agreed -- fully, completely, totally.Bev: Agreed -- fully, completely, totally.Alexander Cheezemhttps://www.blogger.com/profile/08446703016516906469noreply@blogger.comtag:blogger.com,1999:blog-5794893825407092443.post-83348164447935058172010-02-20T02:46:48.803-04:002010-02-20T02:46:48.803-04:00I think we've brushed against another importan...I think we've brushed against another important issue, of whether the educational and other support systems are ready to deal with a diagnosis system that is on the surface a one size fits all category and on the inside part that few people see is nuanced beyond what most people could really understand. As Gavin Bollard pointed out, the DSM is supposed to link you up with support services that are appropriate to your needs. I recall seeing on the Autism Speaks website once a recommendation that HFA/AS be treated with ABA... So hypothetically I might walk into a IDEA planning meeting with full intent on asking for full blast services in one area and perhaps a placement in a gifted and talented program somewhere else and the school counselor might just look at me and say "are you sure you don't want ABA?". Granted, the school is looking to pay for as little as possible so they'd be happy not to force it on me. However, if inside all they are thinking is "why isn't this idiot accepting the ABA, its the only scientifically validated approach for autism... if they don't know what's good for them why spend the time trying to work with them... I'm certain their kid can't really function in that gifted and talented program because everybody knows autism=retardation so we'll just claim the program is full."<br /><br />This really is an argument for fixing the school system and other life support systems and for exorcising from society the stigmas which haunt many of us, not for avoiding scientifically appropriate labels. However I think it still points out a problem that we may encounter with the diagnoses being combined together. We don't know yet if one part of the community will end up dominating the voice and image of the diagnosis. If any one group does, the others will suffer. Instead of taking sides in a fight over who will be forgotten, we should be positioning ourselves to present a nuanced and balanced view to the rest of the world. Towards that effort, thanks Bev for the great post.CrouchingOwlhttps://www.blogger.com/profile/11487490296599614185noreply@blogger.comtag:blogger.com,1999:blog-5794893825407092443.post-31865007292989134142010-02-17T11:10:13.405-04:002010-02-17T11:10:13.405-04:00All of which is to say I think our community has a...All of which is to say I think our community has a long time to go before every configuration of autistic person is accepted. Including (maybe especially) configurations that have no particular official label to set them apart. Like I know many autistics of all official diagnoses who seem like you and like me, but there is no term for us, and we span every possible official diagnosis and functioning level. While those who share an official label with any of us may be almost entirely foreign. Although I am also hesitant to form groupings without much care, because for instance if there was a group for people who write long things and those who couldn't we would both be in both. One thing is for sure though, the community in general needs to get past an unfortunate tendency to only accept people's explanations of who we are if they happen to like us. I see way too much "I don't like this person so I just won't accept their explanations of their abilities", which ends up pointlessly dividing us. <br /><br />And people with less common variants of autism stand to fare the worst in such situations because in order for people to treat us as we are they have to believe we are as we are. And believing us requires understanding that the forms of autism most familiar and intuitive to a person are not the only ones out there. I see many people of our subtype (whatever it may be) facing skepticism from autistic people whose experiences are more likely to be represented in most autistic people's ideas of what an autistic person is like. And that's a shame, and a more subtle symptom of the hierarchies Bev is talking about.Amandahttp://ballastexistenz.autistics.org/noreply@blogger.comtag:blogger.com,1999:blog-5794893825407092443.post-13750115327768628012010-02-17T11:09:10.958-04:002010-02-17T11:09:10.958-04:00AnneC: Yeah, as you know if that were a grouping ...AnneC: Yeah, as you know if that were a grouping I would be in the same group. And I also have that ton of extra text. And in other circumstances the inability to use language at all, or only use it in abbreviated "telegraphic" form, or ways that mean nothing at all related to my thoughts, or use many of the wrong words, or (gasp) in ways that sound harsher than intended. These things are not mutually exclusive. And the more pressure (including time pressure) the less likely it is to even approach the right form, except sometimes when I am following a common script (the stuff about what pressure does to my expressive language being an exceedingly common script). And sometimes I am just reduced (by pressure) to screaming. So rather than sit there screaming and banging my head I have had to try to learn that past a certain point I shouldn't try to produce language that will never come out anyway. <br /><br />I also suspect there is some connection between shifts in language ability and shifts in other cognitive abilities. There are autistic people whose abilities seem to be locked into a very rigid and unchanging pattern. And I find that if they already have some reason they don't want to listen to me, it is absolutely impossible to explain the CONSTANT shifts that are going on to exchange different abilities, and they may assume that I have every ability I have ever had, except all at once instead of with exchanges going on every second or minute or year or whatever. I even had someone once try to explain yo me that my abilities don't really go away when they go away. I think that stare of shifting is really counterintuitive to anyone who is not experiencing it, and hard to fathom. Especially the fact that I have no control over the shifts and that the abilities my brain gives me have nothing to do with my choices or desires, and that sometimes those shifts may become virtually permanent. And that shifts existing don't mean I can call up any random convenient ability. And that even with the shifts there are patterns (like sucky receptive language even at my best). It's even hard to explain the difference between having trouble figuring out which word was said, and having all words sound so meaningless that without (or often despite) effort, language itself might as well never have existed or be a concept I don't have (I get a sense that mishearing words is commoner than whatever my brain does to language, where I can often hear and sometimes repeat the sounds just fine, bit the meaning might as well be in another solar system). <br /><br />So especially because I get the sense ours isn't the most common autistic configuration, it can be difficult to explain even to the most willing autistic who doesn't share this pattern. And to those who don't... (shudder) I remember trying so hard to communicate it to an unwilling person once that I spent hours of time on the computer and my pain levels were sky high, only to be told that if I really wanted to I would be able to compress a long piece of writing into something easier to understand. Even though I sacrificed several days worth of energy trying and just couldn't, the person as good as told me I was lazy and doing it on purpose to irritate her. (Which reminds me, trying to explain to anyone that only being able to write things long is just as much a language problem as only being able to write things short, which I should know since if somethings long it's because I can only write it long and exactly same if I can only write it short.) Or even being outright mocked by an autistic person for being "long and repetitive". (Even though to me each "repetition" had a slightly different meaning.)<br /><br />Cont'dAmandahttp://ballastexistenz.autistics.org/noreply@blogger.comtag:blogger.com,1999:blog-5794893825407092443.post-79882142309685594932010-02-17T02:10:11.349-04:002010-02-17T02:10:11.349-04:00Amanda: I remember that thread. I stopped being ab...Amanda: I remember that thread. I stopped being able to say anything at all in it because of being told (in some way, I don't remember the exact words) that I was one of those "fancy language using" autistic people who presumably had all kinds of ease communicating. <br /><br />When really I absolutely do not have ease like that. <br /><br />Words have always been like throwing lots of patterns at some other pattern I think I see and hoping something sticks and makes sense. I know sometimes it comes out sounding "good" but that is by no means reliable. People see my posts online but they don't see the pages and pages and pages of text I had to type first, and then extract bits from and rearrange, in order to get something coherently communicative out of it. And of course everything I typed, erased, typed, erased, is eternally lost, though I can assure you there are innumerable characters that fall into this set!<br /><br />And it just tires me out to be constantly responding to people who clearly discount whatever I say because they're apparently seeing something in my phrasing(?) or vocabulary that doesn't mean what they think it does.<br /><br />...and bringing this back somewhat on the topic of the original post, one reason I agree with a lot of what Bev is saying is precisely BECAUSE of this struggle to communicate I've always had, coupled with the utter terrifying-ness of knowing that using words at all sets me up to have to explain myself further even when I can't.<br /><br />Anyway, one consequence of this is that in the future I imagine autistics might be somewhat "groupable" NOT according to superficial "functioning level" (and sure as hell not according to how much presumed value a person supposedly has) but according to things like specific cognitive strengths and weaknesses pertaining to language and other things. <br /><br />Frankly I suspect that there's a whole lot of us out there who have something like "receptive language difficulty coupled with good apparent expressive language some of the time, and a tendency to shut down and become unable to use language at all when pressured for a response". But of course that kind of thing doesn't get studied or even acknowledged when you've got this idea in place that "real" disability cannot coexist with "real" ability, or that apparent abilities (or disabilities, for that matter) have to be utterly consistent all the time in all contexts in order to truly exist.Anne Corwinhttps://www.blogger.com/profile/04940566603711834053noreply@blogger.comtag:blogger.com,1999:blog-5794893825407092443.post-89635487987655434502010-02-16T23:33:12.267-04:002010-02-16T23:33:12.267-04:00ThIs is the first time I have ever taken matter fr...ThIs is the first time I have ever taken matter from a mailing list off of it in this manner. But since I have been called an abuser and a fraud (by Kent) in direct connection with this, and since he accused me of bringing in the moderator as if the moderator couldn't see for himself what was going on, I figure it is better to explain just this once what happened.<br /><br />The sad thing is that I remember musing, once the smoke from the clusterfuck had died down, that if Kent had just backed off after the requests for less pressure, he might have found that people started agreeing with him, once we had time to evaluate the situation he had brought up, and come up with words to respond to it. I'll never know at this point because reading the incident he asked to evaluate has become irrevocably tied with intense pressure and the stress of finding myself defamed. But I have never hesitated to denounce elitism when I have found it, nor have others on that list, so if we had been permitted to find it in our own time we would quite possibly havedenpunced it. It's hard to know by now though because I know I am not the only one who has associated that incident with extreme stress and pressure (at a time when I had too much work on my hands to blog more than occasionally, let alone evaluate others' blogs, which I wasn't even reading at the time he began demanding that people read and evaluate a blog entry really rapidly). <br /><br />So the problem wasn't that he was harsh or blunt, nor that I and the list members who had the same problem as me had no experience of being considered too harsh or blunt even by other autistics (would that Kent could have seen the messes another listmember and I used to get in on the Autreat planning list over... harsh denouncememts of elitism that pissed off more people than anything). Nor that he denounced elitism (the public record of what many listmembers have said on that subject speaks for itsel, go take a look through Joel's and my blogs for some of the easiest to findf). It was a matter of stress and pressure that blew up much bigger than it would ever have if we'd all been taken seriously when we said "We can't do this right now and pressure makes it worse." I otherwise apologize for bring list matters up in public but given the awful things that have been said, people should know there were two sides to this. I do expect since I am yet again the one speaking up (despite being again far from the only person this happens to) I might again het more of the blame than exists, so be careful in interpreting this as between just two people, because it wasn't. It also wasn't a situation where Kemt denounced elitism in general, which is easy to agree with, but an individual instance of it, which takes time to figure out.Amandahttp://ballastexistenz.autistics.org/noreply@blogger.comtag:blogger.com,1999:blog-5794893825407092443.post-6934298408519613132010-02-16T23:31:57.257-04:002010-02-16T23:31:57.257-04:00And I have been saying the same thing in various f...And I have been saying the same thing in various forms since the very early 2000s. When a pattern exists, many people will comment on it. It's not for any one person to claim credit. <br /><br />As to what Kent alludes to: I tried to say I didn't have the time or energy to evaluate the very specific situation Kent brought up on the listserv, and then reply to it, and that a lack of replies was probably due to that and other autistic communication problems. (I especially thought it would be understandable to not want to jump in denouncing something until I knew what I was denouncing.) Lots of people verified that this was precisely why they hadn't replied. Kent began to list off people by name and demand to know why we hadn't replied, and refused to take our reasons seriously. I explained (despite being conscious that Kent was becoming outright hostile to anyone who dared have the spoons to reply to something else but be unable to rapidly evaluate the very specific situation Kent brought up. Kent became more and more insistent until the moderator jumped in and told him to lay off, at which point Kent began to accuse me of putting pressure on the moderator, and refused to believe me even after I complied with a request to reassure the list that I had not gone running to the moderator. Then he began to refer to the explanations of why people might not be able to reply (especially under pressure) and the requests to stop pressuring us to respond, as abuse, and told me in private that I was a fraud. <br /><br />So the problem was never that Kent had a problem with elitism, or that he denounced it in a style people didn't like. It was that he demanded a rapid response even after receiving explanations as to why this might not be possible, and the pressure he put on people (even after explanations of why pressure makes it harder for many autistic people to communicate)caused a chain reaction that made replying even harder. Then if he got responses from anyone who had said they couldn't communicate under pressure, he would refer to it as if such people had attacked him in some way. <br /><br />In other words it was one of those mailing list clusterfucks that happen sometimes. It was not (as Kent would know if he had seen how often many of us had done so) that people on the list were ever shy of denouncing elitism. Many on the list had been denouncing elitism for years, and sometimes taking huge amounts of crap for doing so (or, yes, even doing so bluntly -- although by the time Kent brought up that aspect he had forbidden me to respond saying I had had that problem, so i didn't, even though as many on the list knew I used to be infamous for a communication style many regarded as "angry"). It was that Kent brought up a specific situation and before any of us had time to evaluate it and respond he was already pressuring us for responses, even after repeated explanations of why it was hard for us and why pressure made it harder. <br /><br />Cont'dAmandahttp://ballastexistenz.autistics.org/noreply@blogger.comtag:blogger.com,1999:blog-5794893825407092443.post-75912923825563175572010-02-16T22:58:47.457-04:002010-02-16T22:58:47.457-04:00Kristin,
See this for my views on it.Kristin,<br /><br />See <a href="http://aspergersquare8.blogspot.com/2008/03/i-am-joes-functioning-label.html" rel="nofollow">this</a> for my views on it.Bevhttps://www.blogger.com/profile/06766614739853100172noreply@blogger.comtag:blogger.com,1999:blog-5794893825407092443.post-54742112012542640422010-02-16T22:53:26.260-04:002010-02-16T22:53:26.260-04:00I've been thinking a lot lately about the term...I've been thinking a lot lately about the term "high functioning" lately, and I'm curious about whether or not it's a very...fraught term? I write about disability and am non-neurotypical (though not diagnosed on the Autism Spectrum). And I've started to feel that the term is a bit...demeaning. It seems to dichotomize people with disabilities in ways that I think are too...simplistic. I am very high functioning in some ways and not at all high functioning in others, and I start to wonder if the phrase is just one more means of dividing and regulating people with disabilities (i.e., "I've been classed as high functioning, and these are the things I'm supposed to be able to do neatly and without making anyone feel uncomfortable."). Feel free to ignore me if this is too much of a derail--I'm just curious whether or not there's actually something to my squick with the phrase or if it's just me. Or what purpose it really serves (other than to further marginalize people who are not coded as "high functioning").Kristinhttps://www.blogger.com/profile/13802639814234250619noreply@blogger.comtag:blogger.com,1999:blog-5794893825407092443.post-17464419702501996972010-02-16T20:12:32.742-04:002010-02-16T20:12:32.742-04:00Kent,
I almost never comment on listservs. In fact...Kent,<br />I almost never comment on listservs. In fact, I usually don't read them; I just don't have enough time. I am doing well when I can keep up with this blog.Bevhttps://www.blogger.com/profile/06766614739853100172noreply@blogger.comtag:blogger.com,1999:blog-5794893825407092443.post-35715957387296268932010-02-16T20:04:00.432-04:002010-02-16T20:04:00.432-04:00I don't give a damn what people call me -- as ...I don't give a damn what people call me -- as long as it stops at senseless name-calling. If it goes beyond that, I intend to use every fibre of my being to fight it.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-5794893825407092443.post-5780345730539875332010-02-16T19:58:38.923-04:002010-02-16T19:58:38.923-04:00I said the same thing a year and a half ago on the...I said the same thing a year and a half ago on the Hub list serve and I don't remember anyone, including you Bev, siding with me. In fact, I was completely alone in saying it. Its part of the reason my invitation to leave was quickly accepted by the administrator. <br /><br />I said the same thing on ASAN's listserv and I was booted. Somehow, you're getting credit and I was booted. Hmmm.... perhaps I said it a bit more harshly and to the point. My style is just as legit an autistic form of communication but it seems the same social rules apply to autistics as the general populace. We still have a long way to go.Kent Adamsnoreply@blogger.comtag:blogger.com,1999:blog-5794893825407092443.post-5543948708373415472010-02-16T14:53:01.013-04:002010-02-16T14:53:01.013-04:00Thanks Bev, that is what I meant. Not the standard...Thanks Bev, that is what I meant. Not the standard intelligence test IQ, but the unmeasured abilities of everyone on the Autistic Spectrum. I don't agree with standard intelligence tests which are biased against people who might understand language in different ways, or find it difficult to comply with a structured test, or find the person examining them aversive.<br />It's all about respect. And if you have that from the beginning then it is a lot less likely that some will be "written off" while others struggle through an unfair system.<br /><br />And you have taken a huge step towards engendering that respect on behalf of the entire autie community.<br /><br />xxLisahttps://www.blogger.com/profile/17090964959615102849noreply@blogger.comtag:blogger.com,1999:blog-5794893825407092443.post-45641170174905027812010-02-16T03:41:52.969-04:002010-02-16T03:41:52.969-04:00Thank you for writing this post. I feel the same ...Thank you for writing this post. I feel the same way.DJ Kirkbyhttps://www.blogger.com/profile/08481107164497582398noreply@blogger.com