Well, I guess it's that time of year again. In accordance with the combating autism act, the IACC is asking for input from U.S. citizens. It's time for Gadfly to do his civic duty as an American citizen and adult with autism and offer his thoughts.
The form was very bureaucratic and difficult as is typical for the government in general and the IACC in particular. So I will just go into the gist of what my suggestions were. I realize that this was probably about as effective as writing a letter to Santa Claus but I did it anyhow. Also, the IACC and the combating autism act have been a pretty big joke since their inception and I am not terribly optimistic about this act being able to produce research or other things that will help persons with autism.
I stated that I was concerned about how the IACC allows certain members of the neurodiversity movement, namely Ari Ne'eman and Katie Miller to testify before its committee. They are naturally testifying against a cure for autism and research that could result in prevention of someone becoming autistic. This defeats the entire purpose of the combating autism act. I suggested that they and others like them not be allowed to testify or give their thoughts. Members of the neurodiversity movement protested this law and then hypocritically embraced it after it passed and found they had a soapbox on which to present their platform to the government. I wrote about this previously
I also wrote that I believed that at least one person on the spectrum who is in favor of a cure and prevention of autism be appointed as a public member of the IACC. The combating autism act stated that at least one public member would have to be on the spectrum. Currently that person is Stephen Shore, an autistic who opposes curing and preventing autism. I said that I did not believe that Stephen should be a public member of the IACC because he disagrees with the principles of the combating autism act.
I wrote about my concern that both Shore and John Robison are allowed to review grants for research that is publically funded. Both of these individuals have expressed opposition to a cure for at least some ASD's. Also, I don't believe either of them has the necessary qualifications to review this research. I believe that people should be chosen on their merit rather than on their ability to get a lot of autism conference speaking engagements or their ability to write a commercially successful memoir.
I wrote about discontinuing research on vaccines as I believe there is no proof that vaccines cause autism and so far there is evidence that they don't. Also if you read the 2003 california report the tripling of prevalence between 1970 and 1990 does not correspond with an increase in the vaccination schedule. So there is not even a correlation let alone proof of causation. I have written more about this elsewhere
I also urged them that if Morton Ann Gernsbacher is receiving federal funding for her research that this funding be discontinued immediately. This is someone who has written that autism is not harmful
I also voiced concern about the lack of published adult outcomes in Lovaas' 1987 research. This is in spite of the NIMH funding that Lovaas received to publish these adult outcomes. I suggested that funding for ABA be discontinued until these outcomes have been published in a peer reviewed journal.
I also wrote about what could be done in addition to not what should be done. I suggested using Rhesus monkeys as an animal model of autism in light of the research done by Harry Harlow in which he isolated the rhesus monkeys and they showed traits similar to autism, such as rocking and self-mutilatory behaviors. I suggested that elderly persons with autism be found and be persuaded to will their brains to science. Also, suggested that research on norepinephrine as a causative basis of autism be funded, as the dorsal tegmental bundle which is the main norepinephrine tract in the brain travels through parts of the brain that have been implicated in autism such as the cerebellum and hippocampus.
I also suggested job training program for adolescents and young adults on the spectrum.
Of course, I won't hold my breath for too long waiting for the IACC to enact any of my suggestions.
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27 comments:
There was no national immunization for Mumps until 1970, no national immunization for Rubella until 1973, MMR hadn't replaced single shots for Measles, Mumps and Rubella until 1979 and the thimerosal-containing Hib shot came out in 1985. From the seventies to the eighties, the percentage of children in California who received DTP shots from the seventies to the eighties rose 50%. Finally, in 1990 Merck quadrupled the amount of Mumps virions in their MMR from 5000 to 20,000 without telling anybody. So the CDDS data suggests that there is a strong correlation between vaccines and autism, even during this time period.
Jake, the study that I linked to down by Diane Simpson of the CDC shows just the opposite, decreased uptake of DPT during that time period rather than increased uptake. Also, assuming she is wrong, you have to account for all of the hidden horde of pertussis cases. There would have been a corresponding decrease of pertussis that would have been of a much larger magnitude than the decreases in autism. The HiB vaccine was not given to children younger than 18 months until 1991. The studies of Dale Lorings and many others have shown that there is no temporal relationship between MMR vaccines and increases in autism in the California State regional center. Some of this info you can get if you re-read my articles on this blog and also on my stories web page which I know you are familiar with.
I looked at her study, it said the USIS data you used to claim DTP decreased during that time period is known to be inaccurate, plus there is no corresponding national autism data that goes with it.
The California immunization data on the other had has the CDDS data to be compared to, and is probably more accurate. It did not show an increased uptake of DTP, merely a higher increased uptake of DTP EARLIER in life during autism vulnerability as opposed to stretched out over the 5 or so years before kindergarten. So I doubt the significant decrease of Pertussis cases you speak of would have happened.
The Hib vaccine was given to children ages 18-24 months before 1991 since 1985 during this earlier rise in autism you speak of. When it was quadrupled in '91, that's when autism cases really exploded.
Jonathan, perhaps the most reputable study to have ever claimed to debunked an MMR-autism link failed miserable, and actually showed strong autism associations to both the MMR and thimerosal.
http://www.ageofautism.com/2009/06/japanese-data-shows-vaccines-cause-autism.html
Jonathan
I commend you for your presentation although, obviously, I disagree strenuously with your positions with respect to ABA.
There are many thousands of professionals and researchers who actively investigate and work with autistic children and ABA who confirm the gains made by autistic children receiving ABA interventions, many studies and reviews of such studies. You consider that of no weight but your position, with respect, is a rejection of an evidence based approach which uses the best evidence available to assist in addressing medical issues.
Parents can not afford to sit back and wait a decade or two for a further study to unfold. We must help our children now, using the best evidence. No other intervention currently approaches ABA in terms of assisting autistic children in making gains and doing nothing and just waiting is not a real world option.
I do not consider ABA a cure although I hope that cures are developed and that the research is done to move toward finding cures. In the meantime ABA is what has been show to help ... substantially.
Respectfully,
Harold Doherty
Father of a 13 year old boy with autistic disorder who needs assistance now not 20 years from now.
Jonathan,
I think you're wrong about using rhesus monkeys for research.
It might be more worthwhile to experiment on neurodiverse bloggers since they could talk to us and explain the effects of the drugs on them and most of them are almost as smart as the monkeys.
I finally figured out a concise and clearway to say something I've been trying to get at for some time:
1. I am Autistic. I can communicate my own opinion as to whether I think Autism is beautiful or blows, etc.
2. As long as there are still Autistics who can not(1), Autism not only sucks, it swallows.
I communicate my own opinion and no one listens to it. The "Autistic Community," which is really the "Neurodiversity Community" only wants to hear their own opinions.
Droopy and I, especially Droopy since her life and autism are worse than mine, are the very people "ND" claims to want to help, yet both of us have been shunned and ignored for speaking our opinions and asking too many questions (especially about the validity of so-called "autistics.")
"Neurodiversity" doesn't truly care about autistic people; I think some of them just want to be famous for appearing to do something when they have really done nothing and actually made many lives worse.
Neurodiversity is a place for autistics to be true to themselves, but only on the Internet because their deficits, including expressive and receptive language for some individuals, make it impossible for them to stand up for themselves.
Someone has subscribed to my videos on YouTube who is a rather obvious "devotee"
(my tip-off came in the subscription being followed by a couple of messages that went like "I really admire your videos, I'm really glad you are brave enough to post your so called failures" (referring to my "Why Autistic People make Lousy Newscasters"),
http://www.youtube.com/watch?v=9HY1VUrRWKs
these comments were followed by a series of messages in succession that say things like, "I really hope that we can become really good friends even though I have no videos of my own up yet" etc
(I had yet to respond or anything to this person and I'm not sure what made me decide to go have a peek at this person's channel, but I found they've collected up subscriptions to a few 'transsexuals' but mostly disabled people, particularly those with varying forms of Cerebral Palsy and various gross motor control issues)
and a single message left for him a year ago by a woman with severe Cerebral Palsy that went,
"Dear Steve,
Thanks for signing up for my videos, but I know who you really are. If you post these videos on your sick perverted yahoo groups without my permission, there will be trouble. Home use is fine, but please don't post my videos without my permission.
Thanks,
Marie Carter"
Ugh ugh ugh, and ugh.. and ugh
and so, what does this have to do with here?
Well its always seemed to me that Neurodiversity is, among other things, one of these:
http://en.wikipedia.org/wiki/Attraction_to_disability
(And that's why I refer to a person who is a part of Neurodiversity as a "Neurodiversitee")
JediKnight2 said...
"Neurodiversity is a place for autistics to be true to themselves, but only on the Internet because their deficits, including expressive and receptive language for some individuals, make it impossible for them to stand up for themselves."
'being true to yourselves' -- what is that, a lovely new euphemism for "pretending with strict rigid role-playing rules to be something you're not while stomping the crap out of anyone who's actually are for real and therefore by the nature of who they are either can't or won't play along"?
Its too bad your idea of 'standing up for yourselves' includes always having your feet planted squarely on somebody else's back.
I really wish the lot of you would please just go become World of Warcraft junkies or something and leave Autism and Autistics and our issues alone (aka Don't go away mad, just go away)
but I suppose as long as you're here that at least the constant drumbeat of euphamisms and doublespeak and smarmy feel-good word-Muzak propaganda that are always provided are at least 'interesting' to see.
(Were you really typing with a straight face when you made this post?)
'being true to yourselves' -- what is that, a lovely new euphemism for "pretending with strict rigid role-playing rules to be something you're not while stomping the crap out of anyone who's actually are for real and therefore by the nature of who they are either can't or won't play along"?
I was referring to autistics who are a part of Neurodiversity, mainly those with Asperger's and higher forms of autism, not you. What I'm trying to say is that there are autistics who do not feel good enough about themselves due to their processing issues among other things that could interfere with their daily functioning and being understood by others, including their own family members. When the autistic subject encounters a situation with a younger sibling, for instance, and lacks self-advocacy skills due to being at a young age where he/she could not defend him/herself effectively, the autistic subject then grows up to be resentful of him/her and tries to hide who he/she is just to give the appearance that he/she has overcome his/her autistic symptoms. Plus they remember everything that happened to them in grade school, regardless of diagnosis, and elsewhere yet never seem to get understood fully by psychologists because they can't do a damn thing to fix their problems. It's reasons like that as to why people from Neurodiversity are jerks towards others.
"Its too bad your idea of 'standing up for yourselves' includes always having your feet planted squarely on somebody else's back."
It's too bad you had to butt in when you had no clue what I was talking about and wasn't even talking to you. It's too bad you can't even stand up to Amanda Baggs.....calm down.....you do realize you're upset and obsessing over something the author of this blogger is completely against.....Neurodiversity, right?
"I really wish the lot of you would please just go become World of Warcraft junkies or something and leave Autism and Autistics and our issues alone (aka Don't go away mad, just go away)"
I really wish the lot of Neurodiversity would help themselves like the way I know how to. I'm 24 years old, autistic, and know how to help myself better than any of them combined. I'm also not someone who gets into autistics' faces if they express a desire to be cured. Wow....I can't believe you're telling me to leave them alone while I've dealt with crap from them for being myself on the Internet, and the whole purpose of this blog is to talk about how we don't need no stinkin' Neurodiversity. It's not like many autistics know this blog exists.
"but I suppose as long as you're here that at least the constant drumbeat of euphamisms and doublespeak and smarmy feel-good word-Muzak propaganda that are always provided are at least 'interesting' to see."
All that drumbeat of euphamisms and doublespeak and smarmy feel-good work-Muzak propaganda is what Neurodiversity does ALL THE TIME! Most of what the ND leaders will say means the opposite. An autistic advocate who speaks against a cure is using euphamisms because he/she knows most autistics like yourself are naive and would cry on Mommy's shoulders if the truth about your disability was revealed. Gosh! It's people like you who are used by Neurodiversity, and you're naive for believing in it and getting upset over Amanda taking advantage of you. Just let it be her problem while you spend time doing better things!
"(Were you really typing with a straight face when you made this post?)"
(Did you really decide to post a comment to me to see how I'd type to a non-verbal autistic woman, so if I say anything nasty to you, you can use your disability and gender as an excuse against me?)
and, Lastly, Mr "Jedi Knight" (whoever you are when you're at home)
Here's a little semi-friendly advise for you
before you come roaring in somewhere half-cocked and with guns a'blazing making what you know full well are inflammatory propaganda statements in a place that you know full well will not be received well -- then crying wolf when you're expect-ably/predictably called out for having done so
Before wasting anybody's time in the future,
How about you first make up your mind, figure out what even you stand for and, frankly, who the hell you even are
http://www.youtube.com/watch?v=JgWQ1erBnMo
Until you can at very least do that, "JediKnight2," I'm done with you (and done playing being played like a violin by you and your games).
Maybe Jonathan is tolerant to this sort of thing since this is his site and he obviously allowed the first flaming pro-Neurodiversity word-muzak propaganda BS statement through to begin with, and yes, secondly I fell for and took the bait, and I'll own that, but it happens once, and then enough's enough and I for one, don't go for this kind of gaming -- take it to your SWG or WoW -- we're not your toys, capiche?
No, there is one more thing:
regarding this typical Neurodiversity-twisting claim that I am 'scared to take on Amanda Baggs"
Inspite of the fact that she's sent around legal threats to my home address and I've received very direct threats on her behalf, such as that I might have my head punched in, be raped and murdered (yes exactly those) if I "don't shut up about" Baggs, in spite of the fact that there's been telephone play by these people stalking and ringing up my telephone and threats that my personal information will be posted and passed around so that others may further assist in the stalking, I'm still here talking about it, ain't I?
Furthermore, I have openly invited Baggs to what I call an "Ability-Face off" because while apparently anyone can (and does) go down to the local store and buy and don an adult pullup/protective underwear ("Getting the Truth Out" and call this "diapers' and this being 'incontinent' and can buy devices off of ebay originally (what she did for the AAC devices that appeared in "Getting the Truth out" before she conned the system into giving her devices she'll never need), etc, anyone can pretend NOT to be able to d a good number of things (as we all know now she does)
but she's also claimed a good chunk of my abilities, whats good about me, for her own,
and in person and with observers (not online on IRC and blogs and videos where you can just make these claims)
you can't feign my hearing abilities, my perfect pitch, my aural recall (and sorting) capabilities, my ability to descern the 'subtle' differences of various languages, hell even my ability to cull and cue up entire pieces of music on demand "Droopy's 16 track Random Access Memory" not to mention the degree of Beatles trivia
or my ability to type as I do
You wanna know who really can type at the rate I can?
You wanna know who it is who can do that peabody or whatever block test the way I can?
All of this and more are things she has ripped off of me and claimed as her abilities (the Beatles trivia and recall was one she threatened me with privately on IRC)
I'm sure enough of myself that I have made this challenge openly in now several places, places I know her and her pals read.
I've been ordered by Anne Bevington (Baggs friend acting as lawyer for her from entirely across the country) to make no direct contact with Baggs,
and that is the one thing I abide by (rather happily so)
but would it interest you to know that Baggs is scared enough of the truth coming out, scared enough to allow for others to even lay eyes on her and I on the same premesis that she's had me ordered forbid from two "Autism Conferneces" and the confessed reasons (as stated by the person relaying this information) is that I might "cramp baggs style" if I were there?
She doesn't want people to even see the real deal in contrast to her 'echopraxia" -copies everything she sees) existance.
as for court, right now that's not feasible, and as a number of people have pointed out (including you Neurodiversitees) proving that aspect of things will be extremely difficult in a court of law, at least as things stand now (though there is something Baggs just might be bold enough to do which might change all that), not to mention lawyers need to be paid. Baggs and I both live on disabilty.
so that leaves me at least for the time being in no better of a position to do anything else about her than anyone else..
and why is it, prey tell, exclusively up to me to do something about her?
What are you doing, JediKnight, to do about the situation,
and given my circumstance and what I've been able to do and have done, by continnuing to talk about it and even making this challenge directly to her which she never responds to
what else, prey do tell, would you have me do, if you've got something else in mind that you think I should be doing and its something you can't do yourself -- I'm "all ears"
JedniKnight2 (and any of the rest of you)
If you can get Amanda Baggs to sit down with me and we can have a heart-to-heart about *all* of this and for all the world to see (and possibly, since she's all about making these claims, if I'm gonna be a trained monkey and have my existence stuck out there like a carbival show no matter what I do.. then lets have that too, lets see in no uncertain terms who's the real deal -- I'm up for it and I always have been.
I'm well aware of her twisting and manipulating and word-wrangling skills and the deficits in communication that by contrast I have. This is not news to me.
I'm still more than willing to have it out with her, a regular face to face, because for all her remarkably non-autistic and "insightful' and social engineering skills she's got working for her, I've got just one thing on my side that's all I need and I know it -- and thats that I've got that I'm telling the truth on my side. As long as I stick to that, she can wrangle her heart out.
Truth trumps Bullshit every time (no matter how brilliantly crafted the bullshit may be)
You work it out, you arrange it so Baggs and I can meet in public, preferably with the cameras rolling and the whole deal (I will have support persons with me to be sure) and settle this once and for all before God and the entire world, and from my end we can do this, not a problem, consider me there.
Do you really think I'd make such an open challenge if I wasn't sure, really really sure of myself and whats going on here?
Do you think I'm bluffing?
Baggs doesn't seem to think so.
(Its Baggs who refuses.)
Go figure, eh?
But if you can swing this, or have any other ideas (ones that she can't use to cry victim the way you guys are also such masters at)
well you just let me and everybody else here know, 'kay?
Droopy: I did not publish your last two comments because I believe there is such a thing as overkill, 3 in a row on the same subject is certainly enough.
I know Jedi well and he is a pro-cure autistic who does not like neurodiversity at all and I think he just meant that neurodiversitites are not really being honest with themselves in general but that the internet gives them a forum where they can behave in a different way than real life but he phrased it badly.
I don't think he was aware of your situation with Amanda when he suggested you stand up to her. I have to admit I don't know the whole story with you and Amanda, but anyone who even knows a limited amount as I do knows very well how you have stood up to her and tried to expose her. I understand your anger on that score towards ND in general and Amanda in particular. Jedi himself sometimes has trouble with expressing himself properly due to his ASD and that may be where the misunderstanding went. I don't think he meant any slight towards you. He does agree with us that ND is a bad thing, as I said before.
"Until you can at very least do that, "JediKnight2," I'm done with you (and done playing being played like a violin by you and your games)."
You're the one that entered this territory. I never did anything to you until you decided to jump on my back to attempt to convert me to your views.
I can't believe I have to tell you I'm Jonathan's friend. Wow.....if you've been reading his blog and have come across my messages, you should be able to make that inference! I also can't believe you assume I play WoW and SWG. I had to look up what SWG stood for because I've never played it. Just because my blog username is JediKnight2 doesn't make me the ultimate Star Wars geek. You even admitted you don't know me. This is where you're slow.
I do not give a shit about your history with Amanda. All I was doing was making a comeback. Of course you can't do shit about what she did, but you can still be yourself and ignore her antiques because someone with common sense would be able to eventually figure out that she's a phony, which in fact, some people are already figuring out. It's too bad you haven't thought of that!
"you can't feign my hearing abilities, my perfect pitch, my aural recall (and sorting) capabilities, my ability to descern the 'subtle' differences of various languages, hell even my ability to cull and cue up entire pieces of music on demand "Droopy's 16 track Random Access Memory" not to mention the degree of Beatles trivia"
I'm no savant. Yes, I have an ear for music but so do plenty of people. No, I cannot sing well so I don't have good pitch. Let me guess....you've listened to, have played and sang the same songs, including The Beatles, over and over again, and study everything there is to know about The Beatles so that's why you have vast knowledge in your NARROW area of music. Even if you don't rely much on obsessing or studying this stuff, it seems to me with your lack of language and ability to communicate with others, your brain makes it easier for you to absorb and recall music for your short-term working memory, so your 'filing cabinet' that only needs to rely on music (your limited amount you've kept up with) and facts (off of trivia cards for a band everyone has heard of- not even from school material, the newspaper, local news media or from other people) works properly. Of course if someone makes a mistake when asked a trivia question or you dislike how someone sings to you, you probably account your autism for being so "perfect" within your "expertise" that you expect perfection from those people around you.
"or my ability to type as I do
You wanna know who really can type at the rate I can?"
Typing's not about quantity, but quality. Gosh, you type too much....way more than me that I've been sitting at my computer reponding for over an hour already! Who cares about the pace you type? I'd like to see you touch-type fast, though, rather than relying on your fingers. Even if you do type fast, well it's obvious you rely on a keyboard 24/7so of course you'd type fast! Duh!!!
"You wanna know who it is who can do that peabody or whatever block test the way I can?"
Oh Droopy! I thought you were good at memorizing facts, yet you cannot recall the name of the block design test that is not my biggest strength. Don't worry, that's normal! Just as I thought....you're good with facts as long as they involve your music interest on damn trivia cards!
"what else, prey do tell, would you have me do, if you've got something else in mind that you think I should be doing and its something you can't do yourself -- I'm "all ears""
Well, you and the rest of club ND should realize that you cannot control what me, Jonathan, or anyone else thinks. We have the ability to stand up for our beliefs as to why we'll never be a part of ND for realistic reasons you'll never be able to have or grasp.
Jonathan, your interpretation about what I said about ND is correct, but to be more specific, I'm saying that those who are a part of ND use the forums, bash moms of autistic children and attempt to convert others to their beliefs as a way of coping with stress from having to work so hard with their "deficits" (i.e. avoiding rocking back-and-forth and other stims, wishing others had a special interest in The Beatles and that everyone they dealt with understood them better, etc...), including family, school and work pressures, and therefore behave like the way they wish they could in reality ALL THE TIME while they're the ones planting their feet squarly on Internet users' backs. Gee, I wonder where Droopy got the idea that I do that to others.....that's reaction formation right there, Jon!
"Jedi himself sometimes has trouble with expressing himself properly due to his ASD and that may be where the misunderstanding went."
Thank you so much, Jonathan! Yes, it's hard for me sometimes to express myself as to what I'm really trying to say. That's one reason I'm against ND and am pro-cure. However, Droopy still mocked my statement as if I was referring to myself only. From my experience, it's the statement I made that what she interpreted from me applies toward them, yet took it offensively as if I was insulting autistic people who've never done any harm to anyone. In reality, I cannot tell if Droopy is for or is against ND. It seems she's still part of it and cannot see why someone like myself is pro-cure.
Jonathan,
even though what say he meant just doesn't appear anywhere in the words from him that I've read and responded to, and unless that was some horrendous example of 'sarcasm' (one which I'd have to squint my good eye tight and tilt my head sideways to see even at that) I still don't see how the meaning you find can be extracted from them...
but because its you, Jonathan, advising this and I have a lot of respect for you, I'll defer, take it on faith and take your word for it .. this time/for now anyway (but I'll still be watching carefully, and sincerely hoping that you're not being played like a Stradivarius here).
Thanks for letting most of what I had to say be said. Close enough, you got the main points (it was the first posts I made that you held back, not the last)
and you (general you) could go right ahead and call me "Captain Obvious" for this, but
I also think if somebody means "people with Asperger's" then they that's what they need to say. (There isn't a single Autistic person in the bunch of Neurodiversity -- not one.)
Jedi: Again, you are not reading stuff carefully, I know it is difficult, but saying you don't know whether or not Droopy is anti-neurodiversity is sort of like the old cliche of asking whether or not the Pope is catholic. All three of us are allies in our fight against ND propaganda, hopefully time to put aside these differences.
navywifeandmom said...
"I love how ND treats adult autistics who express their desire to not be autistic.
They seem to be okay with rights for autistic people EXCEPT the right to NOT be autistic or even to simply not WANT to be autistic. Then all of a sudden that's wrong."
navywifeandmom,
damned straight, you can say that again
and why Jonathan inexplicably insists one of them is his 'friend' and allows him to come in here spouting Neurodiversity bullshit and attacking me, any of us for that matter, is completely beyond me
and Jonathan, please stop posting this shit-for-brains neurodiversity human fecal matter's repeated personal attacks on me, not unless you're willing to at very least allow me to respond and alert you and everyone else as to what he really is and what he's doing here.
and to remove all doubts that "JediKnight2" is nothing but Neurodiversity mole -- read here, as linked to right off of Baggs latest entry:
Comment from ballastexistenz
Time: July 29, 2009, 7:04
Really useful resource, also from Bev (who seems to be really good at useful resources at the moment): Derailing For Dummies
http://www.derailingfordummies.com/
Have a look.
What JediKnight2 is trying to pull here is right out of Neurdiversity's playbook -- literally
have a look for yourself
JediKnight2, when you spout Neurodiverity bullshit and then twist it around to try to accuse me and then defend Amanda Baggs?
You're Neurodiversity all the way.
Everyone in ND claims to have "autism" regardless of their diagnosis. I also love it when I read, "I could've been diagnosed with autism when I was younger because I met the criteria then, but I wasn't"
The reasons I have an AS diagnosis is because
1) My doctor is one of those who believes that "high-functioning autism" and "Asperger's" are the same regardless of history and ability to talk (even though I am still more severe than people with AS); he told me the treatment for AS and HFA is the same.
2) It makes me sound less hopeless. I'm glad I have an AS diagnosis because now people are more inclined to treat me like a genius than as being retarded (funny how that works...)
3) He may actually change it to autism because I think he senses that the treatment given to people with AS isn't going to work as well for me and because of how disabled I am compared to people with AS despite my intelligence.
Response inspired by (but not necessarily in direct response to) something Stephanie Lynn has said,
well hell
I "Coulda been" additionally diagosed as having cerebral palsy when I was born -- in fact if anybody asked me I find it surprising I wasn't there were all the markings and the notation even about my very alarming 'spastic movements for a newborn' and the fact that this was one of the reasons I was predicted to be profoundly/severely retarded
but for whatever reason, I wasn't diagnosed as having Cerebral Palsy, and I never have been.
As puzzling as I personally may find this to be, and whether I think, you know "gee if it looks like CP, gets mistook for CP (by onlookers and lay persons at least and occasional I am asked after it by varied semi-professionals and I duly inform them that no, I don't have a CP dx, etc) even if I might even think I'm probably a very good case for CP
I would never and have never self diagnosed myself with it, would not consider leaping into the CP community,
"hey folks, here I am howdy-doody there, I'm a johnny-come lately self DXer, now I have claimed" -- (or even if I were ever actually given the label at this late date in my life)..
"I have CP now, so welcome me to your world, let me just jump right in, with both-feet-and-a-fat-mouth, and start preaching and advocating and being the noisest amongst 'us'"
Nope.
Not gonna happen.
Wouldn't happen even if I were suddenly formally officially clinically (etc etc) deemed to have and have had cerebral palsy after all these years.
I would not bestow that grave disrespect and inflict myself upon people in the CP community, those who have CP have had it all their lives, and often times have it loads more severely than whatever I've got going on in that area.
Labels, no matter how they are acquired or claimed and come by,
are never entitlement to encroach other people's existence (nor become an unwanted spokesperson for them).
"And Now, For Something Completely Different" (and entirely off topic)
A Comedy Break
(warning: strong language, and not particularly Politically Correct, but funny as hell)
"Angry Disabled People"
http://www.youtube.com/watch?v=9_vwv5eoeVw&NR=1
Droopy,
If you did get an "official" diagnosis of CP and that was the reason for your nonverbalness than I wonder what Amanda Baggs would do? She might also have to claim to have CP to keep her story straight.
But, you are correct in that it is just a label; a label is a label.
I don't think my inability to speak well is due to autism. I've always had "dyspraxic" problems (even now as an adult) such as very poor posture, poor handwriting, awkward walking, toe walking, flexing my muscles oddly, trouble properly dressing and feeding myself, weird spasms every now and then, holding my limbs in odd postures, balance problems, etc.
Of course, none of this has an official "label" but as always been attributed to another disorder I have (i.e. autism). I suppose dyspraxia is to be expected with autism but it is also quite difficult to differentiate between dyspraxia and mild cerebral palsy.
I need to get a full neurological workup done of the 6+ hour kind. It would be nice to "officially" know what my problems are.
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