Democratic Underground Latest Greatest Lobby Journals Search Options Help Login
Google

Autistic Liberation Front fights 'oppressors'

Printer-friendly format Printer-friendly format
Printer-friendly format Email this thread to a friend
Printer-friendly format Bookmark this thread
This topic is archived.
Home » Discuss » Latest Breaking News Donate to DU
 
T_i_B Donating Member (1000+ posts) Send PM | Profile | Ignore Sun Jan-09-05 08:02 AM
Original message
Autistic Liberation Front fights 'oppressors'
http://www.telegraph.co.uk/news/main.jhtml?xml=/news/2005/01/09/nalf09.xml&sSheet=/portal/2005/01/09/ixportal.html

It is the latest freedom movement for an "oppressed" minority: the Autistic Liberation Front. You can wear a badge, buy a mug or don a T-shirt proclaiming the movement's goals - to celebrate autism, stop the search for a cure and "defend the dignity of autistic citizens".

The movement, which uses the clenched fist as its logo, was founded recently in America but has rapidly won support in Britain. Adherents compare themselves with gay liberationists, fighting for their "human rights".

Their badges declare, "I am not a puzzle, I am a person" and, "Here we're silenced. Parents don't speak for me."

Supporters argue that scientists' efforts to cure autism, a developmental brain disorder that typically appears during childhood and affects the areas controlling language, social interaction and abstract thought, are like attempts by previous generations to cure homosexuality or left-handedness, and are doomed to failure.
Printer Friendly | Permalink |  | Top
rqstnnlitnmnt Donating Member (245 posts) Send PM | Profile | Ignore Sun Jan-09-05 08:43 AM
Response to Original message
1. what a blind position
i've seen that website before, and though I understand why a specific subset of individuals with PDD would feel this way (that is, those who have a coherent concept that they are different from others and that indeed there are those who are trying to change them, and that also there is this concerted effort to do this to others) I have a problem with declaring "liberation" for *all* individuals with PDD.

I think for the VAST majority of families that are dealing with this, curing is never even an option or a topic for discussion. That's why it's called PERVASIVE developmental disorder -- it's so utterly entrenched in the person's life as to be indistinct from a "non-autistic" personality (as if there actually was one.) No one expects a cure (with the exception of desperate and often irrational parents -- who can blame them?) but what we do expect is for the individual to fulfill as much of his or her potential as s/he can, which interestingly is a whole hell of a lot. For all of my kids, the second they return home (hell, even given a break at school for five minutes) they for the most part either run around and do whatever they want or follow a routine (depending on their age) that includes their favorite activities so they don't go stir crazy/super anxious trying to figure out what to do with themselves. Where's the imprisonment?

Helping kids with autism has become my life's work over the past year, and it bothers me that there are groups who view what I do as brainwashing or somehow suffocating or smothering an individual's true Self. There's a difference between what this group frames my work as and leaving the individual up to his/her own devices, and most importantly leaving the parents without anywhere to turn when they're trying to help their kids learn the most basic of independent living skills.

A lot of people with autism aren't as fortunate to receive the indivudalized treatment they get at our school, and are doomed to 10 or so years in the public ed system (read: worse than anything you can possibly imagine...still.) But this group needs to watch out before making such general condemnations because there are a lot of people trying to do a whole lot of good work, and they fall into the easy trap of speaking from a very narrow and specific viewpoint without considering the position of others for whom they are speaking.
Printer Friendly | Permalink |  | Top
 
Domitan Donating Member (1000+ posts) Send PM | Profile | Ignore Sun Jan-09-05 10:21 AM
Response to Reply #1
5. I agree with a lot here.
Unfortunately, PDD has a major impact on the individual's ability to adapt socially unlike that of other "conditions" such as deafness, gayness, wheelchairness, and so on. Thus, as you say, much intervention is needed in order to help many autistic people survive socially and independently. However, I see that many high functioning autistic/Asperger's folks are not recognized for what they can do and for their unique abilities (e.g., Temple Gradin & Sean Barrow). It's recognizing the fine line between "taking care of them without recognizing their abilities and true worth" and "leaving them to their own devices beyond what they are ready to handle". Some can adapt better than others...so it's important to look at this on an individual basis as the range in the Autistic Spectrum Disorder is very vast and varied.
Printer Friendly | Permalink |  | Top
 
Boomer Donating Member (1000+ posts) Send PM | Profile | Ignore Sun Jan-09-05 01:44 PM
Response to Reply #1
15. I don't buy their argument
As a gay person, the only impediment to my living a full life has been external, from the reactions of a homophobic society. Fortunately, I've encountered far less of that than many other gay people, so I can truthfully say being gay has been an almost entirely positive experience.

I can't say the same for my mother's experience as a woman with Asperger's Syndrome. Her sorrows were all self-inflicted, the result of her very poor social skills. Over time she learned that, inevitably, she would say or do something that would offend her friends and they would shun her. Eventually, she simply withdrew, always maintaining an emotional reserve, even with people she had known for decades.

Ironically, many people admired her or were slightly in awe of her very formal, Old World manner. They didn't realize it was her only defense against a pattern of broken friendships that she simply couldn't overcome.

Since my mother was never formally diagnosed with Asperger's, I was also operating a disadvantage with her. I tried my best to be a dutiful daughter, but I also had to create an emotional buffer to deal with the continual blunders that felt like insults or rejection. I knew, even without scientific backing, that my mother's actions were inadvertent, the result of clumsiness rather than anger or mean-spiritedness, but it was wearing nonetheless.

Asperger's was also the basis for some life-long obsessions of my mother's, her incredible attention to detail, and her food quirks. The hobby obsession was a mixed blessing -- on the one hand her research into Earth Science was entertaining, but she spent her lifetime formulating bizarre theories that ultimately went nowhere. Her OCD resulted in hours a day spent writing notes about the trivia of her daily life. And her food quirks gradually removed items from her diet until she practically starved herself to death.

In retrospect, these aspects of her life seem obvious and dramatic. In reality, they were stretched out over 82 years, woven into her daily life so subtly that it was only after her death that I was able to put the pieces together to realize that mother wasn't just a little "odd", she had actually been a text book case of Asperger's.

I have a hard time celebrating that fact.
Printer Friendly | Permalink |  | Top
 
KamaAina Donating Member (1000+ posts) Send PM | Profile | Ignore Tue Jan-11-05 05:57 PM
Response to Reply #15
70. We believe that the impediment to our full lives is external
The NY Times had a similar article just a few weeks ago.

http://www.nytimes.com/2004/12/20/health/20autism.html?ex=1105592400&en=bceabcdd69b796db&ei=5070&oref=login (registration :puke: )

BOICEVILLE, N.Y. - Jack Thomas, a 10th grader at a school for autistic teenagers and an expert on the nation's roadways, tore himself away from his satellite map one recent recess period to critique a television program about the search for a cure for autism.

"We don't have a disease," said Jack, echoing the opinion of the other 15 boys at the experimental Aspie school here in the Catskills. "So we can't be 'cured.' This is just the way we are."

From behind his GameBoy, Justin Mulvaney, another 10th grader, objected to the program's description of people "suffering" from Asperger's syndrome, the form of autism he has.

"People don't suffer from Asperger's," Justin said. "They suffer because they're depressed from being left out and beat up all the time."


Couldn't have said it better myself. Mind you, these are tenth graders. Sounds like DU material to me!
Printer Friendly | Permalink |  | Top
 
biftonnorton Donating Member (187 posts) Send PM | Profile | Ignore Sun Jan-09-05 08:43 AM
Response to Original message
2. Heard They Might Be Sponsoring Cross Country Drive
I was talking to one of the members who told me he's an excellent driver.
Printer Friendly | Permalink |  | Top
 
Tacos al Carbon Donating Member (326 posts) Send PM | Profile | Ignore Sun Jan-09-05 01:09 PM
Response to Reply #2
13. Self delete
Edited on Sun Jan-09-05 01:13 PM by Tacos al Carbon
Sorry ... possibly inappropriate humor ...
Printer Friendly | Permalink |  | Top
 
American Renaissance Donating Member (330 posts) Send PM | Profile | Ignore Sun Jan-09-05 09:07 AM
Response to Original message
3. deaf-mute pride... I am not kidding.
This is absolutely insane, you have to draw the line somewhere between social identity and illness.

There are actually deaf-mute radicals who are opposed to the treatment of the deaf and mute and especially giving deaf children cohcular (sp?) implants that enable them to hear. They say that is deprives them of the oppertunity to experience "deaf-mute culture" whatever the fuck that is.

I know someone who had to go through a messy custody battle with his ex-wife because she bought into the crap and was dead set against allowing their deaf daughter to hear. After a time consuming, expensive and bloody custody battle, he was awarded custody as the judge felt his mother indended to deprive her of something that would have a dramatic effect on her quality of life.

The notion that Autism shouldn't be treated is right up there with the anti-stemcell crusaders and the freaks who want to get HIV on purpose.

Although it could be an interesting new tactic for HMO's... don't get a cast, celebrate your broken arm, celebrate your cancer, celebrate your manic depression.
Printer Friendly | Permalink |  | Top
 
Domitan Donating Member (1000+ posts) Send PM | Profile | Ignore Sun Jan-09-05 10:15 AM
Response to Reply #3
4. I am Deaf myself
I can very much understand the opposition to cochlear implants. However, keep in mind, that many Deaffies and I appreciate older children and young adults' choices to have cochlear implants...but what most of us do oppose are the forced implants on very young children before they can decide for themselves. While it may seem very perplexing and strange to you, the Deaf Culture can be incredibly dynamic and high-functioning. If you don't believe me, check out the history of Martha's Vineyard where there was a very high percentage of Deaf people in that population...and many of them thrived very well and independently. Many of us do not see Deafness as a handicap, but a difference. Granted that we are disabled regarding the hearing sense, but we can still be just as high-functioning and independent as the regular hearing population.

The biggest problem facing many Deaf people is the attitude by society at large that does not understand the worth of our world, the value of sign language, and so on. That in itself affects the educational system, which causes many Deaffies to be very undereducated. On a personal note, I think that Deaffies can be better served by working with and blending with the hearing world while maintaining their values regarding sign language and a very visual world...instead of cutting off the larger world. Unlike the Black population, we just don't have enough numbers to make the world pay attention to us if we shun the hearing world. I think that both worlds can be best served if they look at what each other can offer.

Regarding the autistic issue here, I work with autistic/Asperger's children (through use of interpreters). While I can empathize with the Autistic society's strong desire to be accepted for who they are as do the Deaffies, there is a crucial difference. Many lower-functioning autistics do require help in order to survive on their own. Deaffies are very very very sufficient in surviving on their own. As for the high functioning autistics/Aspergers, they have unique gifts and strengths that ought to be cherished and made use of (e.g., they make the best witnesses with their incredible visual memory and attention to minute details that most of us don't recall). However, many do require assistance or support in areas that most of us are independent. For example, I've met a few young Asperger's adults who are academically brilliant and very interesting, but need some kind of job mentor or facilitator to help them keep their jobs (i.e., helping bosses understand their social quirks and setting up situations that reduces severe social anxiety).

So in short, it's very easy to be caught in our narrow views of how the world should run, and that others who are quite different need to be fixed. I suggest that many of us take more time to look at the other side, and see what really works.
Printer Friendly | Permalink |  | Top
 
naryaquid Donating Member (282 posts) Send PM | Profile | Ignore Sun Jan-09-05 10:28 AM
Response to Reply #4
6. ..Regarding your post and that of American Renaissance....
I have no doubt that the deaf can be very high-functioning, HOWEVER, I'm afraid I'm with American Renaissance on the idea of deciding for children or anyone,that they SHOULDN'T have Coclear implants...If, after the person HAS the implant - can't they decide that they'd rather be as they were and have the implant taken out?...They should, it seems to me, have the CHOICE.
Printer Friendly | Permalink |  | Top
 
Domitan Donating Member (1000+ posts) Send PM | Profile | Ignore Sun Jan-09-05 10:45 AM
Response to Reply #6
7. Cochlear implants can be very invasive
Why not just go for a high-powered hearing aid that can be taken off at will? As for cochlear implants, a hole is drilled in the head in order to insert the device. The child becomes very salient with that device sticking on the side of the head. And there are restrictions to what that child can do (e.g., cannot have head submerged under water...unless I'm missing a new advance). There have been stories of health problems (not the majority though). Most Deaffies are quite reasonable and have no problems with children wearing hearing aids (easy to put on as well as take off) if it suits them. Cochlear implants are not so temporary. Even those who take it off when older still have this hole in the head that limits some activities (distressing for those who love to swim). As for CHOICE, I agree with you...but young children are not given the choice for a relatively permanent device put on them...which is my main objection here.

While we are talking about choices, not only do these young children not have choices, many parents don't either. The illusion of choice is there, though. When most parents have deaf children, many of them undergo grief, which is most understandable. I'd grieve if I had a blind kid, but not if I had a deaf (or hearing) kid. That's because my world would be very changed, and my life would never be the same again. But of course, I'd adapt. Anyway, who meets these parents to discuss about their deaf children's futures? Most of them are from the medical field, who have their own agendas. Very rarely are the Deaf adults/community consulted to truly showcase different options. That's why many deaf children are raised in the oral system while not being provided sign language/access to Deaf Community as another option. For those deaf children who grow up with Deaf parents or hearing parents familiar and with good access to Deaf Community, those children tend to turn out normally just like "other normal" kids.

On an interesting sidenote, there was one Deaf militant leader in Western Canada who I ran into from time to time before moving back to Ontario. This is a person who made it hard for others if they supported issues that run contrary to the interest of the Deaf Community in his area. Cochlear implants and forced oralism are such issues. One day he came up to me and told me of a seminar he went where he learned of a new device...that worked like a very inconspicious hearing aid (seemed like a cross between a cochlear implant and an inner ear hearing aid)...very hidden and with no known health/mental ramifications. This leader seemed positive about that device, admitting how impressed he was with the advances of this technology that does not harm the recipient. Very curious, indeed! Again, this stresses my point that many Deaffies are reasonable about hearing aid technologies as they see choices still being offered here instead of being "permanently" forced upon Deaffies.
Printer Friendly | Permalink |  | Top
 
naryaquid Donating Member (282 posts) Send PM | Profile | Ignore Sun Jan-09-05 11:40 AM
Response to Reply #7
10. ..Your position sounds very reasonable to me.
Printer Friendly | Permalink |  | Top
 
American Renaissance Donating Member (330 posts) Send PM | Profile | Ignore Sun Jan-09-05 01:01 PM
Response to Reply #10
11. forced oralism?
Human beings are supposed to talk, if you can't talk and hear, SOMETHING IS WRONG WITH YOU, and this wonderful thing we call western medicine can offer a wide array of solutions.

Between missing out on swimming lessons and missing out on a normal childhood, there is a lesser of two evils.

Because of a medical mistake I had serious speech trouble for several years, and to this day my voice is still a little odd, and the idea that I was supposed to embrace this situation was downright offensive.

It was years of hell, even though my GPA was damn near a 4.0, had a girlfriend and lived a basically normal life, people treated me like I was mentally retarded. When I checked in for a flight, I was escorted to the gate to make sure I got on the right plane and tried to make me wear a special id badge for "special" people, this was always fun, especially when in some cases I could fly the fucking thing myself. When I was working at one large company people outside my department treated me like I was one of the mental patients who licked envelopes. Shopping was always a wonderful ordeal, where I was either ignored or salesmen thinking I was braindead would try to pull all sorts of shit.

Parents have a duty to do everything in their means to give their children a normal upbringing, being normal, however society defines normal is very important, and alot more valuble than deaf summer camp.
Printer Friendly | Permalink |  | Top
 
loyalsister Donating Member (1000+ posts) Send PM | Profile | Ignore Sun Jan-09-05 05:22 PM
Response to Reply #11
27. Some of us with disabilities
don't buy into the concept of the "glory of normality."
The truth is that is a load of bull that has been dreamed up so that people can justify behaving like idiots in their dealings with people who vary from the "norm."
The fact of the matter is disability and illness is a part of the ordinary human experience. We all adapt to living in our bodies flawed in whatever way they may be. I recommend reading "Too See and Not See" by Oliver Sacks'. (Found in "An Anthropologist on Mars"). After a guy who has been blind from birth has a surgery that gives him vision, he was tortured by it.
A person's brain has to "learn to see" after the eyes start working, and it is a chaotic mess. It was a nighmare for this 50 year old guy. He wanted it "turned off." It was horrible for him and he regretted the surgery. Struggling with having eyesight was such an obstacle where he had gotten to a point where he worked around not having it almost effortlessly by then.
Printer Friendly | Permalink |  | Top
 
American Renaissance Donating Member (330 posts) Send PM | Profile | Ignore Sun Jan-09-05 07:54 PM
Response to Reply #27
33. and like every other walk of life...
some people with disabilities are just plain stupid and lots of philosophers are stupid too.

There is such a thing as being normal, and right or wrong, being normal is a alot easier than being abnormal.

No matter how much affirmative action or bleeding hearts, those with serious disabilities are never truly accepted, just patronized.

I wanted a career and life based on more than just tokenism.

If I still couldn't talk, I probably would not have had many of the oppertunities I have had in my life since then.

I wanted a normal life, and outside my immediate circle of family and friends who knew me, and that there was basically nothing wrong with me, to the rest of the world, I was a freak who could barely talk.

Putting someone in an insular community to accomodate them as-is, only hurts them, because eventually they will have to cope with the real world, where not everyone knows sign language, and not everyone has infinite patience.

Taking away the oppertunity for a child to be normal and function normally is the cruelest thing a parent can do, especially when it is out of a selfish and superficial belief that every single human trait is supposed to be some source of pride. It is every bit as selfish as the pro-goo sorts who are fighting against stem cell research, they both seek to deprive people of the potential for health because of their own bullshit agenda.

I am fortunate I have a father who was ready to start world war three to get me proper treatment and not some useless troll doll who would just send me to mute-camp.
Printer Friendly | Permalink |  | Top
 
loyalsister Donating Member (1000+ posts) Send PM | Profile | Ignore Mon Jan-10-05 02:52 AM
Response to Reply #33
42. Apples and oranges
Edited on Mon Jan-10-05 02:59 AM by loyalsister
I don't think you understand this concept in it's context. There is a world of difference between adaptation and treatment and CURE.
Noone here has argued against curing diseases when possible.
Nor has anyone argued against treament or adaptation. These people don't appear to be argueing against adaptation strategies. In fact, that seems to be the point. Adaptation strategies are enough. The promise of a cure is an endless waste of effort for some people who could otherwise be leading productive lives on their own terms.
The belief the there is such a thing as "normal" is seriously misguided. Particularly in a culture where lifespan is ever increasing and the number of people who have mobility impariments and diseases increases.
I think that this is something that needs to change. People who believe "normal" is "better" are part of the problem.
As in what? It's normal to never have a cold?
Normal to not have cramps?
Normal to not have pain?
Normal to not experience severe situational depression after the loss of a loved one or a divorce?
Normal to never be one of the fortunate percent to live into your nineties and avoid cancer, diabetes, heart disease, MS, etc?
Some of these are recognized as disabilities, ya know. Diseases are disabilities at least while treatment is underway. Those that are incurable are simply disabilities.
Obviously prevention by treatment is preferable. Stem cell research and better medical treatment hold great promise for these things noone wants to see this go away.
But, what in the hell is normal? Throughout a person's life there will be periods of time where they will be sick and not sick. Bacteria fights yeast, we attack our own organs sometimes. Tobacco tarred lungs protect people from toxicity at popcorn plants where they work sometimes.
People with sickle cell anemia aren't as susceptible to malaria.
What period is actually "normal?"
As far as not having enough signers, that is a huge flaw in our culture. I have seen bills where the legislature wanted to see ASL treated as a second language for educational purposes. That would be wonderful because the more that are available the better. I find it offensive that a person who speaks almosty any language other than English would have an easier time finding a translator in a hospital or airport than would a non lip-reading english speaking deaf person.

I am very sorry for the experiences that you have had.
The things you noted are problems other people have with people with disabilities, however.
But if a person with a disability buys the whole load of crap they are being equally discriminatory.
Not recognizing the option of claiming a life for oneself on one's own terms as a person with a disability is an unfortunate mistake.
Printer Friendly | Permalink |  | Top
 
American Tragedy Donating Member (1000+ posts) Send PM | Profile | Ignore Mon Jan-10-05 04:22 PM
Response to Reply #27
59. Have there really been cases like that?
Printer Friendly | Permalink |  | Top
 
Domitan Donating Member (1000+ posts) Send PM | Profile | Ignore Mon Jan-10-05 04:26 PM
Response to Reply #59
61. Oh yes,
there's one scluptor who got his vision working due to surgery. However, he found visuals very annoying and troublesome. After surgery, he'd still make sculptures, but shut his eyes while doing that. You see...just because a person had their condition "fixed" doesn't automatically mean that person will see or hear or taste or blah blah the way most people do.
Printer Friendly | Permalink |  | Top
 
American Tragedy Donating Member (1000+ posts) Send PM | Profile | Ignore Mon Jan-10-05 04:39 PM
Response to Reply #61
62. No doubt, I just find it remarkable.
I can't imagine what it would be like to never see, or never hear, and then to suddenly acquire the sense.
Printer Friendly | Permalink |  | Top
 
KitSileya Donating Member (1000+ posts) Send PM | Profile | Ignore Mon Jan-10-05 04:05 AM
Response to Reply #11
43. I thought ASL was a language in its own right.
"Human beings are supposed to talk, if you can't talk and hear, SOMETHING IS WRONG WITH YOU, and this wonderful thing we call western medicine can offer a wide array of solutions."

I don't know much about ASL, nor about deaf culture, but in my linguistics class we were told that ASL was a language in its own right. In other words, it's used to talk. Hearing impaired people speak and listen, even if they don't 'hear'. So I don't agree with your implication that just because hearing impaired people cannot articulate orally or hear auditorially, they cannot talk or hear.

However, I do see your point about the importance of being 'normal.' I once heard an anecdote that explained the lisp 's' sound in an accent of Spanish as a result of the Spanish Court changing the way they spoke because the King had a lisp. That is a unique incident where the 'normal' population changed their way of perceiving speech, instead of insisting on setting the parameters for 'normal' communications as they usually do - and which they do in your case. My brother, who is affected with cerebral palsy, has a handwriting so bad it looks like the scrawls of a first grader - an underachieving first-grader. When people see his writing (on the very, very seldom occasions he writes something out longhand instead of using a computer) they assume he is of less than average intelligence. So I see your point. However, how far should a person go to conform to 'normality'? Should they have to undergo invasive surgery in order to fit in? We frown upon it in cosmetic surgery - and while cochlear implants aren't mere cosmetic surgery, isn't there ample evidence that if the child is given a deaf friendly education, and have supportive family and friends, they might not need it?

I don't have the answer (and since I do not have any deaf friends, nor do I have much knowledge of how being deaf is, I don't think it's my place to come up with an answer either.) But I don't believe that an either/or attitude is the best. For some, cochlear implants is a Godsend. But for those who only want to be able to function in society, that should not hinge upon whether they can hear or not.
Printer Friendly | Permalink |  | Top
 
Domitan Donating Member (1000+ posts) Send PM | Profile | Ignore Mon Jan-10-05 03:58 PM
Response to Reply #11
54. Before I go on
This post tells me that you have a hearing loss. Am I off the mark? If so, what level is your hearing loss?

I'm also a university student with a near 4.0 GPA who is fluent in both English and ASL. I have a severe to profound hearing loss. I use interpreters for my classes as well as my work in the psychology field. Due to years of speech therapy, I can speak rather well for myself. However, interpreting services have helped ensured that I could communicate equally with my profs, non-signing classmates, and working colleagues. For 1-on-1 settings, I can handle that alone unless the other speaker's lips move like ventriloquist dummies.

As for there being something wrong with Deaffies who do not speak, that's a very narrow-minded stance. There are some who are very successful even without speaking abilities, because they adapt, use other modes of communication, and have confidence in how they do in this world. Clear speech is not necessary for life's success. Just look at your local engineering professor from China (joke!) Sign language is recognized as a true language and in no way does it hinder language development...or even speech development if the deaf child is able to learn speech.

Your stance is not unfamiliar to me as I've met many other hard of hearing or oral deaf people who feel the same way you do. Made for some very interesting icebreakers ;) I'll not forget the time I went to a university club meeting consisting of oral deaf intellectuals. They looked at me like I was a total 'tard because of my use of sign language. I did speak for myself as well, but that didn't change their attitude at first. However, their stance changed as the meeting went on, because they could see that I could match their wits and better. Also, I'll not forget my speech language sessions with the famous (or infamous in the Deaf World) Dr. Daniel Ling. This Canadian expert on speech pathology had a reputation for tirelessly espousing the oral point of view, and discouraging sign language as an impediment on language development. We discussed different points of views. Interestingly, he was a lot more reasonable and amenable to the Deaf Culture point of view than he let on in public.

Another question: if you are actually deaf or hard of hearing, did you have bad experiences with the Deaf Community? I've met many who did, and that added to their resentment of the Deaf Culture.

Printer Friendly | Permalink |  | Top
 
American Renaissance Donating Member (330 posts) Send PM | Profile | Ignore Mon Jan-10-05 09:11 PM
Response to Reply #54
63. I could hear...
Edited on Mon Jan-10-05 09:13 PM by American Renaissance
I had extreme difficulty speaking, but never trouble hearing.

My extreme distaste for these people comes my own encounters with them, rather than getting support, I was informed that I was a sellout and a traitor for undergoing treatment, and I was ashamed of who I was and blah, blah, blah.

What I was then was someone who had once been able to speak who just wanted his life back. I didn't want a translator, I didn't want to throw my who social life away to spend all my time with these people.
Taking an ASL translator along on a date might be a little akward... oh that is right, I was only supposed to date deaf-mute girls!

They were like a cult, they wanted to take over my entire life.

My perception of them might have been different because I had been able to speak before being silenced by a medical fuck-up. I was not raised in the so-called "deaf-mute culture", so I really didn't see anything there other than a bunch of people who seemed miserible and absolutlely sick of one another, but I appreciate that if someone was raised in the "culture" that might be the only thing they know, and they might see it very differently.

The bottom line is humans are supposed to talk, with their vocal chords and listen with their ears. If you can not do one or either of the above, there is something wrong with you. You can justify it however you choose, but there is still something wrong with you.

The good news is that western medicine can offer a wide array of solutions to this and other problems.

Now, if you choose, you may do without treatment and live your life in your insular little world. But it is selfish and cruel to try to stop others, and especially their own children, from enjoying the benefits of modern solutions. They are simply unfit to be parents, they should have their children taken away by the state and they should be sterilized.

It is absolutly no different than the jesus freaks who starved their baby to near death because they thought it was the second comming of christ.
Printer Friendly | Permalink |  | Top
 
loyalsister Donating Member (1000+ posts) Send PM | Profile | Ignore Tue Jan-11-05 11:07 AM
Response to Reply #63
66. Sorry to butt in......
Edited on Tue Jan-11-05 11:10 AM by loyalsister
But, I really wanted to respond to this.
I wonder if your discomfort was due to the fact that you weren't actually deaf. That may not have been the right place for you to learn ASL. And, it seems to me that it should have been YOUR choice whether you wanted to or not. If so a private tutor might have been more appropriate.

"The bottom line is humans are supposed to talk, with their vocal chords and listen with their ears. If you can not do one or either of the above, there is something wrong with you. You can justify it however you choose, but there is still something wrong with you."

I don't agree that this is necessarily the "bottom line" because it would not otherwise be possible to use language without using those modalities and excel in this world. However, there arepeople who have.
Just because the motor cortex near the mouth is activated does not mean a person cannot override it. THAT is the genius of humans. "Normality" in humans is the ability to compensate for problems. In fact, at the synaptic level the brain has a conditioned compensatory response.
Our visual system is also activated. This provides for visual symbol recognition. We quite prepared to recognize language visually. We do that quite well on paper, computer screens, etc..... As you are now.
We all also use sign language in our daily lives when we do things like point and nod. In fact babies often use gestures as often as words when they are first learning to speak. My 1 1\2 year old niece niece brings me her diaper when she wants to have a new one.
It is quite a stretch to believe that using the visual symbols of ASL would be unnatural when we use others so regularly and naturally.
Printer Friendly | Permalink |  | Top
 
FizzFuzz Donating Member (1000+ posts) Send PM | Profile | Ignore Mon Jan-10-05 09:45 PM
Response to Reply #11
64. please don't confuse Oral Education for Deaf people with your bad experien
Edited on Mon Jan-10-05 09:46 PM by FizzFuzz
experience.

I am very sorry that happened to you, and it certainly is insulting to constantly be treated as a second class citizen. As a woman, I have some experience with that, so I do empathize with you-- it sucks, definitely.

"Forced Oralism" refers to an education system where Deaf children are prevented from learning/using Sign Language. All instruction centers on instruction in how to form speech and lipread. Punishment ensues for children caught signing. Instruction in academics is oral--students are forced to absorb all information by staring at the teachers lips/other visual aids/residual hearing amplified with aids.

At best, only about 30% of speech is visible on the lips (someone correct me if I have that exact percent wrong. But it is only a small percent of the total lip/tongue/throat positions that make up speech). Speech reading is exhausting and imprecise. It is useless in crowded situations or any format other than one-on-one in quiet, non-distracting environments.

People with a good amount of residual hearing (moderately deaf)will generally do better than those who are profoundly deaf. But like any talent, very few lip readers are virtuosos, and many graduates of oral programs think their voices are good, when actually they are nearly unintelligable.

Now, more schools are opting for "Total Communication", a more rounded approach that uses Sign Language to communicate, augmented by speech instruction. This leaves more energy for students to actually learn, rather than spending hours upon hours blowing on feathers so they can learn how to produce the "pah" sound.

As a Sign Language Interpreter in higher education for over 20 years, I can tell you the most engaging, articulate, intellectually well developed people tend to be those whose native language is ASL (American Sign Language), as in kids whose parents are themselves Deaf or fluent in sign. Kids whose parents are hearing, and worst of all, do not use Sign, and came from the "forced oralism" mode were pretty generally very behind academically and socially--in other words, pretty screwed up.

Printer Friendly | Permalink |  | Top
 
KamaAina Donating Member (1000+ posts) Send PM | Profile | Ignore Tue Jan-11-05 06:32 PM
Response to Reply #11
71. "However society defines normal" is very important?
Hmmm... let's see... so if a Bush**-addled society defines "normal" as an unending farrago of fast food, Wal-Mart, the Fox News Channel, Diebold voting, and Toby Keith concerts, those of us who reject that apocalyptic vision are somehow "abnormal" and need to be "fixed"?

That way lies fascism...
Printer Friendly | Permalink |  | Top
 
xpunkisneatx Donating Member (225 posts) Send PM | Profile | Ignore Mon Jan-10-05 01:49 PM
Response to Reply #4
52. I just recently took a sign language class...
and learned all about the "deaf culture". I had the chance to visit a deaf club, and it was an awesome experience. There are some deaf couples that get upset when their children are hearing...like they are somehow inferior to a deaf child, but other than that I see no problem in a group of people celebrating their difference.
Printer Friendly | Permalink |  | Top
 
Domitan Donating Member (1000+ posts) Send PM | Profile | Ignore Mon Jan-10-05 04:20 PM
Response to Reply #52
58. Funny that
Many people just want their children to be similar to them, or at least share fundamental similarities. That's the bottom line, regardless of the parent's condition. Sad truth of human egocentricity.

I know I'd be traumatized if my child had 6 toes on his right foot. How can he walk and run like I do?????
Printer Friendly | Permalink |  | Top
 
American Tragedy Donating Member (1000+ posts) Send PM | Profile | Ignore Mon Jan-10-05 04:18 PM
Response to Reply #4
57. Is your condition congenital? Were you ever able to hear?
I'm curious, I don't think I've even met a deaf person before.
Printer Friendly | Permalink |  | Top
 
Domitan Donating Member (1000+ posts) Send PM | Profile | Ignore Mon Jan-10-05 04:24 PM
Response to Reply #57
60. Yes, I was born deaf
Not diagnosed with deafness till I was close to 2 years old. I was extremely fortunate to have very strong parents who knew what to do for me, and access to excellent education at school and in life. As for "hearing", I've never been able to hear clearly. I used to wear a hearing aid which amplified sound, but didn't make me "hear". The type of my hearing loss (Severe to Profound in childhood...more Profound in adulthood) is such that no matter how much the sound is amplified, the noise is all garbled.
Printer Friendly | Permalink |  | Top
 
tblue37 Donating Member (1000+ posts) Send PM | Profile | Ignore Sun Jan-09-05 03:36 PM
Response to Reply #3
20. I am severely hearing-impaired.
Edited on Sun Jan-09-05 03:50 PM by tblue37
It runs in the female line of my family.

Both of my hearing-impaired sisters and I were enraged when a couple of deaf women deliberately sought out a man with genetically caused profound deafness to make sure that their baby, born from artificial insemination, would be profoundly deaf.

I am PC about many things myself, but the PC nonsense that says you can't say "hearing-impaired" or call hearing loss a handicap offends me. In fact, on my deaf/HoH (hard of hearing) website I'm Listening as Hard as I Can! I have an article entitled "Don't Tell Me I'm Not Hearing-Impaired!":
http://deafnotdumb.homestead.com/pc.html

Printer Friendly | Permalink |  | Top
 
AliciaKeyedUp Donating Member (1000+ posts) Send PM | Profile | Ignore Sun Jan-09-05 03:48 PM
Response to Reply #20
22. You sound amazingly rational
People who wish a handicap on their children are misguided or worse. If we can make the blind see and the deaf hear, we should do so when they are young. That is a parent's obligation.
Printer Friendly | Permalink |  | Top
 
naryaquid Donating Member (282 posts) Send PM | Profile | Ignore Sun Jan-09-05 06:40 PM
Response to Reply #20
31. ,,..Yeah, I'm basically with you, and American Renaissance on this
but the person I was responding to DID say she favored choice on the matter - I don't know what the &%@# "forced oralism" is ...it does sound a little strange..like "forced walking", or "forced visualizing", or something.
Printer Friendly | Permalink |  | Top
 
phylny Donating Member (1000+ posts) Send PM | Profile | Ignore Sun Jan-09-05 08:31 PM
Response to Reply #20
34. I remember reading the article - I think it was in the Washington Post
a few years ago. I also remember being aghast that they celebrated when their son's deafness was diagnosed.

I also work with kids with autism, and I've seen how much happier many of them become when they can at least communicate a bit, when they are helped to NOT bang their heads against the wall, and when people understand that they want deep pressure NOW, please!

It's really easy for a group to say, "Leave us alone!" but in reality, the more self-reliant you help people become, the happier they usually are.
Printer Friendly | Permalink |  | Top
 
Domitan Donating Member (1000+ posts) Send PM | Profile | Ignore Mon Jan-10-05 04:07 PM
Response to Reply #20
55. Call yourself whatever you like
I just happen to think that "hearing-impaired" is a tepid, withered term, but that's my opinion. Even my hard of hearing friends who are not fans of the Deaf Culture dislike that term. I'd just sit quietly and muse while they went on their soapboxes about "hard of hearing" pride.

I personally do not see deafness as a handicap. I admit that it's a hearing disability. To me, a handicap denotes that I'm unable to function and adapt in society according to my age level. That's far from the case for many deaf and hard of hearing people based on their hearing alone. Yes, there are certain limits (e.g., not being able to be a phone operator), but they are trivial compared to what people with brain injuries or significant intellectual delays face.
Printer Friendly | Permalink |  | Top
 
PA Democrat Donating Member (1000+ posts) Send PM | Profile | Ignore Sun Jan-09-05 11:08 AM
Response to Original message
8. The vast majority of people with autism are unable to live independently
as adults. As the parent of a child with autism, I would be failing in my obligations as a parent if I did not take every reasonable course of action within my power to prepare my child to lead as independent a life as possible. In an environment of dwindling resources and dwindling public support for spending on social services, I could not live with myself if I did not work aggressively to provide my child with the tools she will need to survive in this world.

Sad to see parents of kids with autism being blamed once again. It used to be that they were blamed for causing their children's autism and now they are blamed for trying to help their children find their way in a very cold and uncompromising world.

I have friends who have children with autism who are self-injurious and have no concept of danger. If you saw your child with running sores from where they constantly bit themselves, or knew the panic of having your child dart away from your home when you had momentarily turned your back, to be found hours later naked in freezing temperatures playing in a drainage ditch, wouldn't you pray for a cure?
Printer Friendly | Permalink |  | Top
 
Gyre Donating Member (1000+ posts) Send PM | Profile | Ignore Sun Jan-09-05 11:16 AM
Response to Original message
9. That's a shame.
Nothing to see here people. Time to move along.

Gyre
Printer Friendly | Permalink |  | Top
 
Ilsa Donating Member (1000+ posts) Send PM | Profile | Ignore Sun Jan-09-05 01:08 PM
Response to Original message
12. Jesus, shut these people up so I can get help for my son.
If they don't want help, they should refuse it. But my son has PDD and is barely vocal. He has real problems comprehending danger and threats to his health and well-being. We would consider it a miracle if we thought now that he could live independently later.

These nuts fail to realize that not everyone is as high functioning as they are, and need help, a "cure," or preventive information, etc.
Printer Friendly | Permalink |  | Top
 
Boomer Donating Member (1000+ posts) Send PM | Profile | Ignore Sun Jan-09-05 01:51 PM
Response to Reply #12
16. Even "high functioning" has its drawbacks
As I relate in some detail in post above, even high functioning can create lifelong problems.

My mother would probably be diagnosed as high functioning with Asperger's Syndrome. Many of her acquaintances -- she had no real friends, or not for long -- probably did not suspect that Asperger's was the reason behind some of her abrasive behavior. Her doctor's did not recognize Asperger's as the reason she continued to lose weight decade after decade, as more and more food items were put onto her "do not eat" list.

Perhaps if she had been borne into a different generation she could have become successful at some career that required both high intelligence and obsessive attention to detail. Instead, she wasted her time making incredibly neat, detailed lists of Christmas card sent and received, or the trivia of her everyday life.
Printer Friendly | Permalink |  | Top
 
tblue37 Donating Member (1000+ posts) Send PM | Profile | Ignore Sun Jan-09-05 03:46 PM
Response to Reply #16
21. I sometimes babysit an 8-year-old with Asperger's.
Edited on Sun Jan-09-05 03:48 PM by tblue37
He's a great kid--smart, sweet, really adorable. I like him tremendously.

But feeding him--or trying to feed him--is a nightmare. Usually he will eat only an apple, sliced thin and in a bowl of cold water--usually two apples a day (one around 8:00 in the morning and one around 3:00 p.m.), but sometimes three or even four, if he's really hungry.

Occasionally, instead of the apple, he will eat a handful of Cheezits (which his mother supplies, as I never have stuff like that in my home). He will usually drink two juice boxes, fruit punch only. That's it. We are very active when I sit for him. I don't own a car, so we walk all over the place. We go to the parks, to the natural history museum, to the library.

I sit for a little girl his same age at the same time--his only friend. She eats very well. They run around a lot at the parks when I take them there, which is ever day they are with me.

He is using up a lot of energy. But he isn't eating enough to support that level of activity. I worry so much about him. I only sit for him 2 weeks during Christmas break and two weeks in the summer, between the end of his organized summer activities and the beginning of school.

I could easily see him harming himself through poor nutrition. At the age he is now, the damage is likely to be very severe. But as a couple of other people have mentioned, in a sense he is likely to starve himself to death over the years.
Printer Friendly | Permalink |  | Top
 
Boomer Donating Member (1000+ posts) Send PM | Profile | Ignore Sun Jan-09-05 11:02 PM
Response to Reply #21
39. My mother came close to starving to death
At the time of her death, she weighed just 74lbs -- and she was 5'7".

It wasn't anorexia because she never considered herself to be fat. In fact, she was quite self-conscious about being too thin and found it quite uncomfortable. But she couldn't bring herself to eat. It was more a duty than a pleasure, and piece by piece she removed items from her diet until it was incredibly difficult to find anything that was "acceptable".

A lung condition was the primary cause of death, but I'm sure her malnutrition and physical frailty were the underlying reason she couldn't muster immunity.
Printer Friendly | Permalink |  | Top
 
tblue37 Donating Member (1000+ posts) Send PM | Profile | Ignore Mon Jan-10-05 10:40 AM
Response to Reply #39
44. That's how it is with my little firend.
He can't tolerate the taste or texture of most foods. Even foods that he used to eat don't taste or feel right to him now. At the age of 8, depriving himself of any real nutrition can cause all sorts of health problems.

I really worry about him. Unfortunately, his divorced parents try to sweep the Asperger's under the rug. They know he has it, but don't like to deal with it at all. He is on Strattera, but when I asked his mother if they get his liver function checked regularly, she was surprised. She had no idea that Strattera has been shown to be very risky to the liver—in a potentially fatal way. What is worse is that I could see that she was "forgetting" the information as soon as I gave it to her, which is probably what happened when the doctor discussed the drug with her in the first place, as I am sure he must have.

The first time I took care of him was astonishing. He is the friend of a little girl who was in the home daycare I used to run. When her mother asked me to keep her during the two weeks when there was no place else for her to go, I agreed, since I know her and am very fond of her. Then the mom asked if I would also keep her friend, so I said sure. The boy’s mother called to talk to me (I had never met her before). She warned me that her son has ADD, but I said that was no problem, since I have ADHD myself and actually have a website where I post essays about it. I have a lot of experience teaching, taking care of, and tutoring kids of all ages with ADD/ADHD.

But she never said a word about Asperger’s.

Within the first hour of taking care of him, I knew. I have written articles on Asperger’s, and I have a couple of friends with it, so I recognized it immediately. Since the mother hadn’t mentioned it, I thought she and the father might not know, so when the father picked the little boy up that afternoon, I asked if he had ever heard of Asperger’s Syndrome. He froze. Then he said, “We’ve had all the counseling,” and it was obvious that he didn’t want me to say another word.

Later I talked to the mother about it. She also acknowledged that he had Asperger’s. She also mentioned that the reason she was unable to find a sitter for him anymore before I agreed to do it was that all her past sitters refused to take care of him. He is really a very good child, but for someone who knows nothing about Asperger’s his normal behavior might seem recalcitrant or disobedient. He actually can be handled easily, but not if you expect him to respond to heavy-handed control, or if you don’t prepare him for what you are going to need him to do when you need him to do it. Basically, the sitter needs to accommodate his needs, and they are not the same as most other children’s needs.

Can you imagine how it must have been for the people who babysat this child before? They were never told about the Asperger’s, and of course most people have no idea what Asperger’s is. They just got lucky this time with me—I know about Asperger’s and am well-prepared to take care of a child with it. But their refusal to even tell babysitters about how he would be and why—or how they needed to deal with him—sure does explain why the previous sitters wouldn’t take him again.

It is so sad. This kid is a real sweetheart. And yet you know his life consists of being mishandled and rejected. Except for the little girl I took care of with him, he has no friends. And he tells me he hates school. Of course he does. The other kids tease and reject him, the teachers probably don’t really know what to do with him, and the whole unbending regimentation of school is ill-suited to his needs.

After I took care of him this past summer (the first time), his father told me that he had never seen his son so happy. Of course I was delighted to know I had made him happy, but I was also saddened to know that the very plain, simple, insignificant things I did while taking care of him were so unusual in his life that they were like a special thrill for him.
Printer Friendly | Permalink |  | Top
 
Boomer Donating Member (1000+ posts) Send PM | Profile | Ignore Mon Jan-10-05 01:44 PM
Response to Reply #44
51. Makes me wonder...
Edited on Mon Jan-10-05 01:47 PM by Boomer
Makes me wonder what my own mother's childhood was like.

I've always known there was some hidden story there because the photos of her as a child show an incredibly somber, at times even heartbreakingly sad, little girl. She was shy, reclusive, awkward, and didn't marry until her mid-30s, to a man her parents considered completely unsuitable, but who provided what was probably her only chance to leave home and live an adult life.

My mother herself tried to make sense of what she recognized as a social disability. Her answer to the puzzle was that she had been raised around servants and employees of her father (a high-level embassy official) that never showed honest reactions to her behavior, therefore she never learned what was considered insulting. There may be a grain of truth in that theory -- her social blunders may not have been exposed until young adulthood -- but she's always been blind to facial expressions of emotion.

Just a few days before she died, I was walking her down the corridor of the senior center where she lived and one of the other women on the floor opened her door and started a conversation. I engaged in a short, cordial conversation -- asking after her grandchildren and admiring her decorations -- then my mother and I proceed on our way.

"I've never been able to do that," commented my mother, with almost a hint of amusement. "You always seem to know what to say and how to act." By this point in her life she had accepted her limitations and was rather proud that I, on the other hand, could navigate these shoals.

Printer Friendly | Permalink |  | Top
 
amazona Donating Member (1000+ posts) Send PM | Profile | Ignore Sun Jan-09-05 04:26 PM
Response to Reply #16
23. she probably enjoyed her trivia though
I enjoy my lists and trivia. Everything doesn't have to be turned into a way to make money. My lists may not have any meaning to anyone else but I enjoy them and they harm none so let it be. True I don't have a huge income but I know lots of people not on the autistic spectrum who also don't have huge incomes. Maybe it is just unrealistic to think everyone can be "productive" by society's standards. There just aren't enough jobs for that. We can't all have the "sales" personality, and if we did, life would be unbearable.
Printer Friendly | Permalink |  | Top
 
Boomer Donating Member (1000+ posts) Send PM | Profile | Ignore Sun Jan-09-05 11:08 PM
Response to Reply #23
40. You're quite right
And it was thoughtless of me to frame that issue in terms of financial value, which is not one that my mother ever considered important.

It's so hard to untangle just how "deep" the effect of Asperger's was in framing her personality. My mother was also very creative and spent a life time generating everything from children's puzzles to hand-bound miniature books. If Asperger's influenced that aspect of her life as well, then it was certainly a mixed bag of good and bad.
Printer Friendly | Permalink |  | Top
 
proud2BlibKansan Donating Member (1000+ posts) Send PM | Profile | Ignore Sun Jan-09-05 05:19 PM
Response to Reply #12
26. Amen and good for you for speaking out
I am a special ed teacher and I am just shocked by this idea that we don't need to treat Autism. And I think the deafies who speak out against cochlear implants are doing a tremendous disservice to kids facing a lifetime of living as handicapped individuals. That is just plain wrong.
Printer Friendly | Permalink |  | Top
 
Domitan Donating Member (1000+ posts) Send PM | Profile | Ignore Mon Jan-10-05 04:12 PM
Response to Reply #26
56. What is also plain wrong
is the deliberate neglect of the educational system for many deaf people...and the access to sign language and Deaf Community denied by the medical and educational community to many families of deaf children.

I daresay that if the educational system was upgraded so that Deaf children are taught in general (to their potential) at equal levels to their hearing peers...if the majority, if not all, of the parents are allowed access to sign language and Deaf Community as well as the medical perspectives...you'd see far more success in the Deaf World than what we see today. Society's attitudes can be a greater barrier than the deafness itself.
Printer Friendly | Permalink |  | Top
 
Demeter Donating Member (1000+ posts) Send PM | Profile | Ignore Sun Jan-09-05 07:11 PM
Response to Reply #12
32. A Classic Sogn of Autism--Inability to Relate
the lack of empathy for those who need the resources and assistance they don't want for themselves.
Printer Friendly | Permalink |  | Top
 
Banazir Donating Member (164 posts) Send PM | Profile | Ignore Mon Jan-10-05 12:34 PM
Response to Reply #12
48. Shut the reporters up and make them do honest journalism
So that they won't keep spreading the misinformation that there even is such an organization as the Autistic Liberation Front and the complete lie that the people referenced in the article don't want to be helped. Go to the website referenced and read the first article in the library and see if those people are really saying they don't want help before you throw stones at them instead of recognizing that the reporters did a lousy reporting job.
Printer Friendly | Permalink |  | Top
 
gorbal Donating Member (1000+ posts) Send PM | Profile | Ignore Sun Jan-09-05 01:26 PM
Response to Original message
14. There is a reason behind the movement
Read the whole article-people are being pharmacuetically abused and experimented on in the search for some magical "cure". While I agree that sometimes they go to far, many of the basic ideas of the movement are sound.

My brother's current treatment, for example, makes him act more autistic, not less, than he was before when he was on ritalin. But he is much happier, and that is what matters.

:)
Printer Friendly | Permalink |  | Top
 
proud2BlibKansan Donating Member (1000+ posts) Send PM | Profile | Ignore Sun Jan-09-05 05:25 PM
Response to Reply #14
28. Then adjust the meds
but to just decide no treatment is necessary is, IMO, child abuse.
Printer Friendly | Permalink |  | Top
 
Ilsa Donating Member (1000+ posts) Send PM | Profile | Ignore Sun Jan-09-05 05:36 PM
Response to Reply #14
30. It took almost a year to get my son's medication regimen
set. He needs adjustments every few months because of his growth. He couldn't take Ritalin or Adderal or any stimulant ADHD drug. Strattera has worked miracles in his life (and ours).

I wish you lots of luck in getting the right treatment for him, whether it is pharmacological or not.
Printer Friendly | Permalink |  | Top
 
gorbal Donating Member (1000+ posts) Send PM | Profile | Ignore Sun Jan-09-05 10:47 PM
Response to Reply #30
38. Thanks
He is on the right treatment now. It has been years since he has out and out said he was happy and now, every time I talk to him he so, they have to be doing something right. He isn't as alive or as expressive as when he was on Ritalin, which I miss, but he isn't as miserable either.

But to the other poster, whether or not it was child abuse would depend on the severity of the autism. Some people are not even diagnosed with AS until they are adults. My brother, on the other hand, is severely autistic and there is no argument from any side of the issue that he needs special help. It is not his "autism" that is being treated however, but his other problems.

Here is an interesting batch of links from Autistics.org, on "Autistic culture." I like the humor section.

http://www.autistics.us/links2/Autistic_Culture/


:)

Printer Friendly | Permalink |  | Top
 
Chicago Democrat Donating Member (1000+ posts) Send PM | Profile | Ignore Sun Jan-09-05 01:56 PM
Response to Original message
17. My Nephew is Autistic and 21 years old...
We don't know what to do with him. I offered to send him to Community College, he doesn't wanna go. He is completely retreating from the world. There seems no vocation for him. What is he gonna do for his whole life? He will need money and help and Social Security is a pittence.


It tears me apart. He was tortured and teased his whole life. All he does is play video games. I thought if he can play games he could do something. The educational system worked with him til age 20 and now he's just dropped off like a package. My sister basically expects this to go on forever and feels there is nothing to be done.
Printer Friendly | Permalink |  | Top
 
amazona Donating Member (1000+ posts) Send PM | Profile | Ignore Sun Jan-09-05 04:34 PM
Response to Reply #17
24. well what can he do really?
We are very much limited in jobs that can be done by people on the autistic spectrum. Time was, people like this would train in the sciences. I did. But science funding is cut, jobs are outsourced...it is really a waste of time unless you are at the very very top or very very well-connected. Any job that requires "selling yourself" is not an option for us. No medicine or therapy will change that. Everyone can't be oriented toward selling, pushing, and display of self. There will never be jobs for everyone again, if there ever were, and only the pushiest and most people-oriented people will get those jobs. I don't know what is to be done about it. And the very mechanical detail-oriented jobs...well...computers and robots do those now, don't they? Sooner or later we are going to have to figure out how to live in the post-employment world. Whenever I get a bit discouraged, I just remind myself that I am a pioneer.
Printer Friendly | Permalink |  | Top
 
RabidNation Donating Member (45 posts) Send PM | Profile | Ignore Sun Jan-09-05 02:59 PM
Response to Original message
18. logically, by extension:
because there are active and dynamic and functional communities of people with AIDS, leprosy, cancer, lupus, muscular dystrophy, and multiple sclerosis, we should then forget about research or treatment for these diseases too.

somehow, I think the afflicted would disagree.
Printer Friendly | Permalink |  | Top
 
amazona Donating Member (1000+ posts) Send PM | Profile | Ignore Sun Jan-09-05 04:40 PM
Response to Reply #18
25. big difference
If you are cured of AIDS (assuming a cure would be found) then you would still be you.

If you are cured of Asperger's, you are not you. You are a different person with a different brain and mind.

Some people would not choose to be a different person. Others would. When I was a kid, I wanted only to be "normal." I learned that people are truly hateful if you do not look like the rest. So I wanted nothing more than to pass. But it isn't necessarily a negative vision of humanity that some people believe they can actually be accepted as who they are, on their own terms. Might be unrealistic but if they want to go for it, good for them.
Printer Friendly | Permalink |  | Top
 
Ilsa Donating Member (1000+ posts) Send PM | Profile | Ignore Sun Jan-09-05 05:34 PM
Response to Reply #25
29. I don't mind them not accepting treatment.
They have every right to refuse treatment. But they should not discourage research to help those who want treatment for themselves or their children.

My son is doing much, much better on his medication regimen and he is happier. We can see that!
Printer Friendly | Permalink |  | Top
 
amazona Donating Member (1000+ posts) Send PM | Profile | Ignore Sun Jan-09-05 10:11 PM
Response to Reply #29
36. no they should not discourage research
I understand what you are saying, Ilsa. Believe you me, I wanted nothing more than to be like the other kids.

Some of the people in this movement may not have struggled with being violent the way I did. I could not express in words (I do use speech now and I think I do pass as mostly normal, just a little weird) and I expressed myself too much by hitting. Any way I could have avoided going through what I went through...I would definitely want that for the next person.



The conservation movement is a breeding ground of communists
and other subversives. We intend to clean them out,
even if it means rounding up every birdwatcher in the country.
--John Mitchell, US Attorney General 1969-72


Printer Friendly | Permalink |  | Top
 
tedzbear Donating Member (1000+ posts) Send PM | Profile | Ignore Sun Jan-09-05 03:18 PM
Response to Original message
19. Medical science can be extremely abusive at times when not meaning to...
Many doctors and scientists have huge egos which impair their ability to heal. I myself have suffered extreme harm at the hands of medical "professionals" who should have known better, but didn't. One incident was very nearly fatal.

People with Autism and Aspergers Syndrome are asking for something that well meaning health professionals often offer in short supply: respect. Until these egotistical professionals respect the boundaries of their patients, they often do more harm than good.

I support this movement and wish them all the best.
Printer Friendly | Permalink |  | Top
 
Ilsa Donating Member (1000+ posts) Send PM | Profile | Ignore Sun Jan-09-05 09:12 PM
Response to Original message
35. You know, if they can survive without help, fine. But what about
autistic children that won't be able to survive, communicate, work, get their most basic needs met, without intervention?

There are kids who come close to eating dog shit if they aren't properly supervised. My kid eats shaving creme, crayons, dirt, pancake mix, etc, if you don't stop him.

I've never met any teachers that tried to take away my child's dignity, either. High functioning autitic kids are high functioning because they got help, not because they were left isolate themselves from the rest of the world.
Printer Friendly | Permalink |  | Top
 
amazona Donating Member (1000+ posts) Send PM | Profile | Ignore Sun Jan-09-05 10:18 PM
Response to Reply #35
37. I didn't get help
I wouldn't assume high functioning autistics got help. In my day, all you got was a label. They told my parents I had this problem, my parents said I didn't, we moved out of town and nothing was done. And I think my outcome was better than, well, 100 percent of the other HFAs I know in the real world.

I don't seriously believe that high functioning autistics get any benefit from medication. I think what might help is an appeal to logic. I had to learn the hard way that life is more difficult if you express yourself through hitting rather than through words.

What I do think would have been of benefit was a way to learn, through logic, what other people know by instinct. I cannnot recognize faces or social cues just by instinct the way neurotypicals can. My mother did not know what to do other than to send me to "charm school" over and over. Lotta good that did!


The conservation movement is a breeding ground of communists
and other subversives. We intend to clean them out,
even if it means rounding up every birdwatcher in the country.
--John Mitchell, US Attorney General 1969-72


Printer Friendly | Permalink |  | Top
 
Boomer Donating Member (1000+ posts) Send PM | Profile | Ignore Sun Jan-09-05 11:16 PM
Response to Reply #37
41. You've nailed it
>> What I do think would have been of benefit was a way to learn, through logic, what other people know by instinct. I cannnot recognize faces or social cues just by instinct the way neurotypicals can. <<

Yup, that's exactly what would have helped my mother the most. It was the social ineptness that created the greatest difficulties for her and curtailed her life.

Without Asperger's my mother would have been... well, someone else entirely, so I can't honestly say I would have wanted her "cured." And I do wonder if the label would have made her life even more difficult. But understanding the nature of her "oddness" would have helped smooth some of the roughness away for both us.
Printer Friendly | Permalink |  | Top
 
PA Democrat Donating Member (1000+ posts) Send PM | Profile | Ignore Mon Jan-10-05 10:53 AM
Response to Original message
45. If people cannot understand parents' desire for a "cure"
check out the attitude of some of the posters on this thread regarding inclusion of kids with disabilities in regular education.

http://www.democraticunderground.com/discuss/duboard.php?az=view_all&address=104x2926078
Printer Friendly | Permalink |  | Top
 
Ilsa Donating Member (1000+ posts) Send PM | Profile | Ignore Mon Jan-10-05 11:55 AM
Response to Reply #45
47. People who are high functioning shouldn't be working to deny treatment
for those who are not high functioning. That is what angers me about a "movement" such as this. My autistic child is swept into a boad category of other autistics under this drive. And those who want this apparently innately have no consideration for those who need the treatment, individualized education, medication, help with behavior, etc.
Printer Friendly | Permalink |  | Top
 
Banazir Donating Member (164 posts) Send PM | Profile | Ignore Mon Jan-10-05 12:38 PM
Response to Reply #47
49. Check your facts about such a "movement" before making these statements
Start here:

http://www.autistics.org/library/ambweintraub.html

Then tell me these are people who oppose help. I'd think people here of all places would be familiar with media distortion.
Printer Friendly | Permalink |  | Top
 
PA Democrat Donating Member (1000+ posts) Send PM | Profile | Ignore Mon Jan-10-05 01:19 PM
Response to Reply #49
50. I read your link
How sad that we are pitting parents of children with autism and people with autism against each other. The writer acknowledges a system in which there are never enough funds, never enough qualified people to provide services to the disabled. Kit Weintraub has acknowledged the same problems.

It breaks my heart to see 2 groups of people who should be working together instead waging a war of words.
Printer Friendly | Permalink |  | Top
 
noonwitch Donating Member (1000+ posts) Send PM | Profile | Ignore Mon Jan-10-05 11:45 AM
Response to Original message
46. People working with autistics need to think outside the box
There are all levels of autism, from people who have no connection with the outside world at all, to people who are pretty functional.

Whatever-the cause needs to be researched, and families with autistic kids are anxious for effective treatments. Because autistics do not think and process information the way allegedly normal people do, those who love and work with them need to at least try to put themselves in the other person's place.

The "I'm not a puzzle" statement bothers me. Of course you are a human, but you have a different way of thinking and for the rest of us, figuring that out is sort of like solving a puzzle. I do understand that a pretty functional autistic would be offended at being treated like he or she was sick or the victim of a disease, or being forced to take medication that has lots of negative side effects.

I've worked with a couple of autistic kids over the years, and know someone from my church who is a highly functional autistic. He works in a computer-oriented job, for what it's worth. The kids I've worked with always involve a highly individualized treatment plan, because every autistic is different in how they interpret and perceive things, and like anyone else, has intellectual strengths and weaknesses in different areas. It takes a lot of observation (with non-verbal autistics) and a lot of time spent with the person outside of the office to really get an idea where he or she is coming from.

My own theory is that for some reason, autistics are born without the natural ability to screen out needless sensory stimuli. They are constantly bombarded with light, sound, symbols, images, etc., and aren't able to determine which ones directly involve them. The massive confusion that this sometimes involves (think about being at the mall or some other really loud place with lots to look at after taking a hallucinogen)causes them to shut down to different degrees and ignore everything, or to sometimes pick the wrong things to pay attention to.

There's a really good book written by an autistic woman about her life called "Nobody, Nowhere". She is australian and her first name is Donna, but you can search Amazon and probably find it. This book helped me with the kids I've worked with over the years, because she is so honest about how autism has affected her life.
Printer Friendly | Permalink |  | Top
 
NorthernSpy Donating Member (1000+ posts) Send PM | Profile | Ignore Mon Jan-10-05 03:10 PM
Response to Original message
53. perhaps autism has been defined too broadly...
... to the point of including people who might have a somewhat unusual temperament, but who are not seriously impaired.

If these particular folks are up to creating their own liberation front, then I wonder whether the diagnosis of autism fits them at all. Maybe they are just strongly introverted, and have been wrongly labeled as pathological because of it.
Printer Friendly | Permalink |  | Top
 
BoogDoc7 Donating Member (121 posts) Send PM | Profile | Ignore Tue Jan-11-05 10:15 AM
Response to Reply #53
65. Answering a few things...
To answer a question "forced oralism" is when a deaf child is not allowed to learn sign language, and just lip reading, simply because it is believed that the appearance of being "normal" is better than not. The problem with this (and many other ways of educating the disabled that rely on "appearing normal" as a principle) is that they make it harder for a disabled person to function. Oralism is VERY difficult to learn and VERY imprecise. Sign language isn't (deaf people almost naturally sign).

What this addresses - and what the autism group addresses - is that the problem is NOT with the disabled, but with society's views of the disabled as being incapable. MANY disabilities, with proper training and education - can be overcome to have fully productive lives that contribute. I worked with - and for - blind people at the Louisiana Center for the Blind - and learned much of this there.

Therein lies the debate of the search for "a cure" and the need for society to realize that disability is not dehumanizing. I think some of this stems from when polio WAS cured, so the belief lies that ANY disability can be "cured." A balance needs to be struck somewhere in the middle. Society needs to understand and accept the disabled for who they are, but the disabled also realize that maybe a "cure" isn't such a bad thing in the end.
Printer Friendly | Permalink |  | Top
 
Redstone Donating Member (1000+ posts) Send PM | Profile | Ignore Tue Jan-11-05 11:41 AM
Response to Original message
67. Oh, spare me, please...
So, when parents try to help out their autistic kids, all of a sudden that's "oppression?"

What a crock of crap. I don't have any autistic kids, but if I did, I'd be pretty damned honked off at someone calling me an "opressor" for trying to help my kid.

Redstone
Printer Friendly | Permalink |  | Top
 
mojojojo27 Donating Member (7 posts) Send PM | Profile | Ignore Tue Jan-11-05 12:27 PM
Response to Original message
68. dhg
dh
Printer Friendly | Permalink |  | Top
 
KamaAina Donating Member (1000+ posts) Send PM | Profile | Ignore Tue Jan-11-05 05:53 PM
Response to Original message
69. It is highly unlikely there will ever be a "cure" for autism
for the simple reason that autism is not a "disease", but rather, a behaviorally defined syndrome. That is, there are many different root causes that all lead to the behaviors we think of as "autism".

Of note is that Hans Asperger referred to what he was studying (now called Asperger syndrome) not as a disease, but as a stable personality trait like impulsivity. What if science developed a drug to "cure" impulsivity, then forced it on all impulsive people? (I know, I know, sign Bush** up for the clinical trial... :-) )

Helping people to communicate is entirely different from "curing" them. Consider the use of American Sign Language versus drilling a hole in a Deaf person's head (didn't OxyRush have a cochlear implant? Hmmm... Rush... hole drilled in head... :-) ). (Sidebar: Some children with autism who do not have speech have had success using ASL.)
Printer Friendly | Permalink |  | Top
 
pop goes the weasel Donating Member (1000+ posts) Send PM | Profile | Ignore Tue Jan-11-05 11:07 PM
Response to Original message
72. All they want is to be accepted as not normal
Is that so much to ask? Why do they have to pretend to be normal, why do they have to pretend they even want to be normal, in order to be able to get the help they need?

When my daughter was a teenager, she was having increasing trouble walking, even sitting due to her physical condition. She was so hopeful when we went to an orthopedist that he would agree to prescribe braces for her. Instead, he dismissed her needs with "a pretty girl like you doesn't want braces." Like hell. A pretty girl like her wanted to be able to walk. And it wasn't like he was prescribing a wheelchair either. He was condemning her to being bedridden, to dropping out of school, because he was more interested in her looking normal than in her being able to function to her best ability.

It took us another year before we could get the braces. In the meantime, further damage was done to her deteriorating, unsupported joints. All for the sake of someone else's idea of normal.

The point of disability self-advocacy is that it is OK to not be normal, it is OK to simply seek to be the best you can be as you are, it is OK to not put on the mask that pretends to the world that nothing is different. It is, in fact, more than OK. It is integral to health, dignity, and a full life.

As Sojourner Truth put it, talking about women's rights and blacks' rights:

"If my cup won't hold but a pint, and yours holds a quart, wouldn't you be mean not to let me have my little half measure full?"
Printer Friendly | Permalink |  | Top
 
Valerie5555 Donating Member (1000+ posts) Send PM | Profile | Ignore Wed Jan-12-05 12:31 AM
Response to Original message
73. Considering how that Canadian Ambassador guy who saved the Americans wore
GLASSES from something like nearsightedness, I wonder what people were to say or do if someone like him started up a "NEAR / FAR SIGHTEDNESS PRIDE" movement that said how anyone with those sorts of eye conditions, where the person had less than 20 /20 vision should be proud of them and not even think of considering anything like Lasik eye surgeries, though if anyone wanted to and could afford it, they probably should go for having their eyes "lasered."
Printer Friendly | Permalink |  | Top
 
DU AdBot (1000+ posts) Click to send private message to this author Click to view 
this author's profile Click to add 
this author to your buddy list Click to add 
this author to your Ignore list Thu May 02nd 2024, 04:06 AM
Response to Original message
Advertisements [?]
 Top

Home » Discuss » Latest Breaking News Donate to DU

Powered by DCForum+ Version 1.1 Copyright 1997-2002 DCScripts.com
Software has been extensively modified by the DU administrators


Important Notices: By participating on this discussion board, visitors agree to abide by the rules outlined on our Rules page. Messages posted on the Democratic Underground Discussion Forums are the opinions of the individuals who post them, and do not necessarily represent the opinions of Democratic Underground, LLC.

Home  |  Discussion Forums  |  Journals |  Store  |  Donate

About DU  |  Contact Us  |  Privacy Policy

Got a message for Democratic Underground? Click here to send us a message.

© 2001 - 2011 Democratic Underground, LLC