So I'm sitting here reading about Autism as research for a story. Once again, I am struck by the simularities between autism and homosexuality as well as other so called disorders. People believe that by treating symptoms of autism such as rocking and lack of eye contact you cure the "disease" by making the person appear normal. But, first of all, is autism really a disease or simply a neurological variation? Just as homosexuality or bi-sexuality is a variation. It is not a disease, not a disorder, not something that has to be cured. It's simply... different. Groups of people, after all, seem to have an instinctive fear of difference such as certain African tribes in the past killing new born twins seeing them as bad luck or in Europe back in the middle ages, burning young and old women as witches. Not to mention beating up, ridiculing and tormenting anyone in this day and age who is handicapped, shows signs of being gay or is of a different race or religion. We no longer need this sort of behaviour. It is outmoded and useless. It has been damaging society for far too long.
Society must adapt to difference. More people must educate themselves about autism, homosexuality, different religions and cultures. We must learn to see each other as individuals. Otherwise we end up with things such as- Young men having electrodes attached to their genitals to shock them if they look at pictures of males. Or, in Stone Butch Blues how the writer talks about being raped by cops just because she wore men's clothes. Autistics electricuted with mild shocks for their behaviour. It has to stop. The attitudes must change, the old assumptions must be broken. Otherwise, people will continue to fall through the cracks, something that must be avoided at all costs.
Posted by Richard Berg (Member # 133) on :
If it's causing problems in your daily life, it's a disorder, simple as that. Most treatments for autism do not involve burning stakes so I don't see your point.
Posted by Synesthesia (Member # 4774) on :
Wouldn't anything at all from a bad temper to things that are more severe cause problems in daily life? Anything could be considered a disorder, even not being able to go to sleep before 12 am and wake up at 6 am... The problems do relate to each other in a small way... There is only a small difference between detroying native american tribes through genocide and sending children to boarding schools (Like they did in the past) to learn how to be "proper" to the point that they cannot relate to their relatives or speak their own language...
Posted by Alucard... (Member # 4924) on :
Syn, one thing that always perplexed me is the inordinately high percentage of children of NFL quarterbacks that suffer from autism.
Coincidence?
Worth checking out...
Posted by SoberTillNoon (Member # 6170) on :
I am pretty sure that that is due to damaged sperm.
The reason that Autism is concered a disorder, and homosexuality should not is simply because of the way it effects the person. Homosexuality simply means that you have a preference for the same gender over the opposite one. A homosexual can function normally in the world.
In contrast, we have autism. Autism is in no way, shape, or form like homosexuality. With autism, the person does not function normally in the world. They do not have the same capacity to learn and communicate thoughts through speach. Autism keeps a person from being part of soceity, and that will that ever change. The symptoms that autism present will not allow the sufferers from being excepted into a community for obvious reasons, while homosexuality only requires people to stop being biggotted.
[ June 12, 2004, 12:50 PM: Message edited by: SoberTillNoon ]
Posted by Synesthesia (Member # 4774) on :
What is meant by functioning normally though? That's the main thing I am trying to figure out. Would it really be a disorder if more people in society educated themselves about it and learned how to handle people who behave differently? Wouldn't that make things easier?
Posted by Nick (Member # 4311) on :
Homosexuality is a devolopemental occurence. Not necessarily a disorder. It simply depends on how much hormones are in the mother's bloodstream when the hypothalamus is being developed.
That doesn't make a homosexual's feelings any less valid than a heterosexual's. It's just different, that's all.
Autism is a genetic occurence, it is not developmental. There is a giant difference between that and a developmental difference like homosexuality, and that is why you cannot rationally compare them.
[ June 12, 2004, 01:14 PM: Message edited by: Nick ]
Posted by Synesthesia (Member # 4774) on :
The reactions many people have to the both of them are simular. Plus there are some people who believe that treating a few symptoms equals a cure. (Reparative therapy, what little I know of ABA)
Posted by Alucard... (Member # 4924) on :
quote: I am pretty sure that that is due to damaged sperm.
Sorry, but every man makes damaged sperm. That is why we makes millions of sperm per day, due to the high deformity rate. I know because I had mine checked. Twice. Count was good, with some missing flagella and a few deformed as well.
I believe the autism/NFL link is something more complicated, but genetics may be at the root of the problem...
Posted by Synesthesia (Member # 4774) on :
[ June 12, 2004, 01:39 PM: Message edited by: Synesthesia ]
Posted by Mabus (Member # 6320) on :
I was under the impression that individuals with autism, at least in moderate to severe cases, were unable to take care of themselves. That they find it difficult or impossible to learn basic skills and carry out daily activities like preparing food. I would certainly consider that a disorder; the cause is irrelevant.
As for symptoms versus causes, isn't it really the symptoms that are a problem? If our bodies all carried a virus, but it harmed no one, would that be a disease? Are our intestinal bacteria a disease whose symptoms are "naturally suppressed"? If the underlying cause ceases to cause, who cares if it is still there?
Posted by AvidReader (Member # 6007) on :
Great links, Syn.
I know we've talked about the deaf before so I'll use that as an example. Plenty of people who are deaf consider it part of who they are and would choose not to hear. They're sad if they have "hearing" children becuase the child will never share that part of their lives. Autism could easily be the same for people with the...disorder? Variation?
I'm with Mabus on the last bit. I thought autistics couldn't take care of themselves. I wonder if it's like Down Syndrome. Citrus County is home of the Key Training Center. They teach work skills, help with job placement, and provide group homes. If autism is like Downs, it would be entirely possible to be a happy, productive member of society with a little help.
I hope that is true. My mom worked with an autistic child a few years back. She had heard that autism meant his brain was working so much faster than everyone around him that he couldn't relate. To her, it seemed like he was constantly daydreaming. When she could get his attention, he seemed like anyone else. The trouble was keeping him grounded in reality instead of drifting mentally.
I may have to look around for some more info on this. Thanks for the thoughts, Syn.
Posted by fallow (Member # 6268) on :
neat topic, Syn.
Though I don't think it's "as simple as that" as Richard suggests, his post raises a nice question of definition. All outlying behavior can't be categorized as mere variation in Avid's productive-member-of-society.
fallow
Posted by Synesthesia (Member # 4774) on :
It depends on the spectrum. From my limited research it seems some people are high functioning, meaning you couldn't tell they are austistic until you talked to them and their patterns seemed a bit unusual. They might go on and on about a subject they are interested in one second and clam up the next. Then you have some that do not speak and seem to be unable to communicate. A lot of the people on these sites on both sides of the issue say that if autism is caught early the child can be taught to adjust and can learn. But some children are over stimulated from too much loud noises or uncomfortable clothes. Things that would be shrugged off by most people are major sources of distraction and irratation for people who are autistic. My opinion is that autistic people can be taught to be productive members of society without being forced to completely conform to so-called normal standards. If certain autistic behaviours like rocking or hand waving are comforting, why should they be discontinued? Not everyone wants to be social and extraverted after all, everyone is different. Most importantly, I think that emphasis should be placed on what the child is interested in to help them to learn better. If the child is fixated on trains, use books on trains and shows about trains to engage them. I also believe that autistic traits disappearing or fading does not mean that the autism is cured. It reminds me of eating disorders and cutting and how people try to treat the main symptoms while ignoring what could be causing them. An autistic child could be misbehaving because she is uncomfortable or something like that.
Posted by Dagonee (Member # 5818) on :
Wanted to pop in to say that I'm extremely interested in this thread, but have no meaningful information to add. Please keep the discussion going.
Dagonee
Posted by Phanto (Member # 5897) on :
Hypothalamus?
?
What on earth does that have to do with homosexuality? I thought it merely controlled hunger and the pituary glands along with other hormone systems?
Posted by fallow (Member # 6268) on :
*backPeddles with extreme furiosity*
Posted by Synesthesia (Member # 4774) on :
Where did that come from? I have odd theories about homosexuality.
Posted by Dagonee (Member # 5818) on :
quote:Homosexuality is a devolopemental occurence. Not necessarily a disorder. It simply depends on how much hormones are in the mother's bloodstream when the hypothalamus is being developed.
If I recall correctly, this was merely a conjecture in the Homecoming series, not anything founded in empirical evidence. I doubt it was meant to be taken as scientific fact.
Dagonee
Posted by fallow (Member # 6268) on :
you don't have odd theories, Syn.
Posted by Synesthesia (Member # 4774) on :
When it comes to gayness I do. I don't think gayness is that big a deal. In fact, I don't even care what causes it anymore than I care what causes homosexuality. That doesn't matter. What matters is that a certain portion of the population is gay, has autism, is deaf, is different in some sort of way and society has to get used to it. The days in which a person could be killed or astrisized (sp) for their difference are gone. We don't need this anymore, it does no good. It doesn't help a young 7 year old with asperger's to adapt to their condition. It doesn't help a fifteen year old gay male to feel less out of place at school. And prevention, why would you want to prevent a person from being gay or different in some other manner? Is difference really such a bad thing? It shocked me in that article to learn that a proponate of ABA also tried to cure feminine boys. What's wrong with a boy being feminine besides 9 of his peers beating the crap out of him because he'd rather stay indoors and play dress up or Barbies with his sister than kick a ball? What in the world does feminine mean? (Plus, I know I'm misspelling that word.)
Posted by fallow (Member # 6268) on :
syn,
feminine just means sugar and spice and everything nice.
fallow
Posted by Danzig (Member # 4704) on :
That is a question - what if homosexuality was completely a choice? Would it then be morally permissible to discriminate against homosexuals?
Posted by Phanto (Member # 5897) on :
Not from my opinion. But those religious people who believe in the Old Testemant's truth would say so.
Posted by Synesthesia (Member # 4774) on :
Some people, fluid people do choose to be gay... They could face discrimination in both the so-called gay community and the so-called straight community. To all those who say there's a homosexual agenda-Impossible. All the different gay factions don't agree and those that try to push it as being congenital will hate people who have switched to being gay as a choice for undermining their argument. No one should be discriminated against though. Sexuality is too complicated a thing.
Autism isn't something a person has, or a "shell" that a person is trapped inside. There's no normal child hidden behind the autism. Autism is a way of being. It is pervasive; it colors every experience, every sensation, perception, thought, emotion, and encounter, every aspect of existence. It is not possible to separate the autism from the person--and if it were possible, the person you'd have left would not be the same person you started with.
This is important, so take a moment to consider it: Autism is a way of being. It is not possible to separate the person from the autism.
Therefore, when parents say,
I wish my child did not have autism,
what they're really saying is,
I wish the autistic child I have did not exist, and I had a different (non-autistic) child instead.
Posted by fil (Member # 5079) on :
This is a great discussion. First off, Autism IS a developmental disorder (sorry Nick ). It clearly occurs during the developmental part of a person's life. Not that has anything real to contribute because I don't think that is Syn's point. Also, it is a disorder not a disease. I don't think they know for sure what causes Autism, only its symptoms. As a disorder, that is all you have to work with so you can only really treat the symptoms, not the cause...'cause we just don't know what that is, yet.
Also, re: NFL. I don't think there are more kids with autism in the NFL, but I am sure those in the NFL who have kids will use their positions to raise money for research. What there is right now is a disturbing trend of increased autism diagnoses across the country, athlete or not. I have no idea if it is because Autism is still a relatively new diagnosis and we are simply seeing more people diagnosed accurately or there are, in fact, more kids developing the syndrome. Many parents with kids with autism still say it started right after their little ones got their vaccinations and a lot of research is looking at this.
It was said best above...Autism is "treated" because, without assistance, many folks with autism would not be able to survive, period. If you don't need help, you don't get a diagnosis. A rather famous person with autism (the "higher" form called Aspergers) named Temple Grandin only half jokingly noted in a talk I attended that a good portion of the tech heads at NASA probably could be diagnosed with Aspergers. All the "positive" traits of autism can be found in many folks in the sciences along with some of the "negative." It was an interesting discussion and one that, knowing a fair amount of NASA scientists locally, seems reasonable.
Why aren't the diagnosed? Because they can get up in the morning without help. They can talk on the phone, pay their bills, get dressed, resolve conflicts, etc. Many folks with autism simply can't do that for a variety of reasons. And people really typically only treat those symptoms that cause them to hurt themselves or others or in some way prevent them from doing something. I have worked in the field of supporting people with disabilities for a while now and rarely do I see folks getting treated for rocking. They get medications because they might be smacking those around them or they might have a behavior plan or a carefully structured environment because of an unhealthy obsession with coffee. I am not a big fan of behavior planning or medications, but anymore you need to show some risk to health and safety to treat, not just the awkward rocking or other repetitious motions.
That said, I have no idea how this could be compared to homosexuality. I am curious why this comparison. I am curious why these two aspects? Why not Down Syndrome and homosexuality? Why not Autism and heterosexuality? Or Autism and "tastes great" people (vs. those dastardly "Less filling" people).
fil
[ June 13, 2004, 01:11 AM: Message edited by: fil ]
Posted by Synesthesia (Member # 4774) on :
Probably due to the negative associations and stereotypes for both of them. The way people assume that all autistics are mutes who rock back and forth. Or that all homosexuals are gender outlaws out to tear down the fabric of society.
But the main simularity has been the attempts to "treat" autism and homosexuality. I have to do more research on the subject, but there are some simularities. Or, it could simply be my odd habit of associating things.
Posted by ClaudiaTherese (Member # 923) on :
Again, great topic, Syn. I haven't the time nor energy to respond appropriately, but I too am enjoying the discussion.
Posted by fil (Member # 5079) on :
Are people still trying to "treat" homosexuality? How so? I mean, sure, there are some folks out there who try to "de-program" homosexuals but homosexuality isn't even a MH diagnosis as it once was. And in the cases of those "treated" they are all done voluntarily where I think there are very few folks with autism who voluntarily get put on medications or get involved in behavior modification plans.
I am wondering if this connection comes from the (at least US) feeling that sexuality, even at best, is still something closer to a disorder than a natural state of being. I am not sure if Syn is US or not or that Syn thinks this way about sexuality, but the comparison between one disorder and a view of sexuality speaks to this.
Sexuality in this nation is both prevalent yet extremely juvenile and immature. We parade naked women to sell every product under the sun (though, oddly enough, not Viagra where one would think that WOULD be the most appropriate place...instead we get freaky frozen face man) and yet the barest glimpse of a woman's breast on television causes a national uproar. Youngsters become sexually "activated" (biologically speaking) in the early teens, yet we have a State mandated age or church mandated relationship that determines when sex is "legal" or "appropriate." The Catholic church holds up homosexuality as a sin and an abhorence yet they keep heterosexual men from ever knowing the physical love of a woman in their priesthood...if homosexuality is an aberration, so is the priesthood. To even have constructive, honest and open talks about sexuality freaks most adults out and is it any surprise that kids grow up not knowing much more than what their bodies say about sex...or what television and movies have to say about it.
Sorry for the shift, but I have a hard time accepting sexuality as a disorder. Autism is really a disorder and the lives of kids and adults with it are very complicated and can be difficult for the person with autism and those that love him. Sure, not all folks with autism rock back and forth or can count toothpicks that fall on the floor. But many can't communicate with those around them, few can have a "typical" life with mortgages, marriage, jobs, and choices that we all take for granted. I know fathers and mothers are proud of their kids and they don't want our pity. I am cool with that. And if they choose to not "treat" their kids, that is cool. If their children rock or play with dust motes or do whatever, fine. But that doesn't change that most folks with some form of diagnosed autism spectrum disorder needs some sort of support, mostly through the rest of their lives. Homosexuals don't require that, not matter how much they love someone of the same gender.
fil
Posted by Synesthesia (Member # 4774) on :
*Snerk* naked women selling viagra
See, it depends on the perspective. If you talk to some autistics they will say that they like being solitary. That they are proud of the positive aspects of autism such as an ability to be fixated on certain things, and an ability not to get involved with irratating social order stuff. I don't really think it's a disorder... Anymore than homosexuality is. Parents, upon finding out that their child is gay or has autism end up lementing miserably about how the child will lack a "normal" life. Just want is meant by a normal life? Not everyone wants to be social, work in an office, have 2.5 kids. And yet, there are many people who are autistic and gay who do just that. They have children, houses, lives. You can have a life even if you are "handicapped." That's what society needs to learn. That difference need not limit a person. Homosexuality isn't a tragedy. Neither is autism. When education emphasizing useful things a person with autism can learn to adapt to society and still keep their identity.
Posted by fil (Member # 5079) on :
Syn, good points. And I agree with most, but this is poignant...
quote: If you talk to some autistics they will say that they like being solitary.
If you can talk to a person with Autism and they can respond "I like my solidarity" then all is cool. Temple Grandin could easily say this. Donna Williams can say this. People who can speak up for themselves, autistic or otherwise, are going to have an easier time in life than those who don't. Most people who are homosexual can do this, many with autism cannot.
Good point about parents lamenting their child's life when they hear a diagnosis of autism or that at some point they find their child is homosexual. But again, these are very different feelings. Autism is diagnosed at a very young age whereas homosexuality really isn't something you find out about until waaaay later in life. I would be willing to bet more parents "grieve" the new life for their child if they are autistic than if they come out to their parents, especially in these more "enlightented" times. I think a more apt comparison (if using the autism for early and something else for later in life) would be schizophrenia, which usually isn't diagnosed until late teens or even early 20's. THAT is a significant change that will impact a person's life in a much more complicated way than homosexuality would and causes parents to really re-evaluate who their child is and what their life will look like from then on.
quote:Homosexuality isn't a tragedy. Neither is autism.
Agreed. It truly is all perspective.
quote: That difference need not limit a person.
This is really what it boils down to, I think. It isn't the differences of people with autism that limit them...it is their inability to communicate with the outside world, inability to interract with society in a way that will allow them to live on their own, etc. It isn't society's personal feeling about autism that keeps them down, though it is that very thing that has a negative effect on homosexuals.
I agree, people with autism can have as much autonomy and individualism that they can handle. I also agree that people shouldn't be "treated" until who they are is masked by layers of medications and behavior planning. People who can live on their own with autism don't suffer the slings and arrows that folks who are homosexual. As discussed earlier, there probably a ton of folks who have more "functional" forms of Autism Spectrum disorder who never get diagnosed because there is no need...they do fine. We might call them "nerd" when they are in school and "pointdexter" or "dweeb" but we also value them when they fix our computers, program our mainframes, or put a person on Mars. Unless they are homosexual, then society shuns them and puts restrictions on them.
Syn, do you always start up such cool topics? I only post here intermitently, but this is one of the cooler ones.
fil
Posted by Dagonee (Member # 5818) on :
quote:The Catholic church holds up homosexuality as a sin and an abhorence yet they keep heterosexual men from ever knowing the physical love of a woman in their priesthood...if homosexuality is an aberration, so is the priesthood.
First, the Church does not hold homosexuality up as a sin. The Church says there is an intended mode of sexual expression and that sexual actions outside that mode are sinful. This includes a lot more than just homosexual acts.
Second, the Church holds to the notion that humans are more than there sexuality. In one sense celibacy is an abberation, because it's a departure from the norm. But in another sense it's a sacrifice voluntarily made by a person intending to dedicate his life to a particular form of service to Christ and his Church.
Finally, I'm not sure why think the two beliefs are incompatible. Both are derived from the belief that human beings can control the sexual impulse and are not defined by it.
Dagonee
Posted by fil (Member # 5079) on :
quote:Finally, I'm not sure why think the two beliefs are incompatible. Both are derived from the belief that human beings can control the sexual impulse and are not defined by it.
Exactly. Yet one is a sin and one is a sacrifice. But I am nearly de-railing the thread by veering into these waters. The bigger point to bring the thread on track is that maybe the comparison of a developmental disorder to sexuality is a telling one. Autism is a developmental disorder and homosexulity simply defines one type of relationship between two people. I should not have brought the Catholic Church into it and I am sorry, I was only trying to point out different points of view on sexuality and the fact that this country in particular has mixed feelings of what sexuality is (as well as what Autism is, too! ).
fil
Posted by Dagonee (Member # 5818) on :
quote:Yet one is a sin and one is a sacrifice.
No - a homosexual living withing the Church's guidelines would be making the same sacrifice as the priest.
Again, according to the Catholic Church, homosexuality is not sinful; homosexual actions are.
Dagonee
Posted by Synesthesia (Member # 4774) on :
I got to do more research but, the other day at a meeting a woman mentioned a place in Canton, MA called the Rottenburg (sp?) institute where they use shocks in order to make teenage girls behave. Some of them are autistic. I have also read about many people with autism being forcefully restrained. Then there is also this article to consider- http://www.autistics.org/library/tito-can.html
But what I'm thinking of is what would be the best way to help a person who refuses to speak to get along in society? I once met a man who according to my friend, just stopped talking. He simply didn't want to. There are times when I wouldn't mind doing that myself. Yet, not talking is impractical when it comes to getting a job. There are many autistic people who can do amazing things with calenders and still have trouble finding and maintaining jobs.
Another thing on my mind- even a high functioning person could have had a lot of problems growing up; violent teasing, abuse from parents, teachers and professionals. Such as in this article- http://www.autistics.org/library/dotous.html If things like that are still happening something has to be done to stop it.
Posted by Ryuko (Member # 5125) on :
There's a difference between having a disorder and making yourself the disorder. It makes perfect sense to me to say that a person with autism is so affected by the autism that they would not be the same person without it. However, there are certain things that autistic adults and children have difficulty with and many of them are very much involved with having a "normal" life.
The disorder-as-person thing has been bothering me for a while now. There's a growing tendency to treat obesity or being overweight as a part of a person. To some extent, this is healthy. Worrying less about your weight and what you eat takes away stress that can control your lifestyle. But the website that I read which supported this phenomena, www.fatso.com (warning: bare butt pictures for no reason), supported things that would make the readers even more unhealthy. For instance, in the q&a section, someone wrote in asking for advice on how to remedy wearing out pants between the thighs. The advice columnist told the reader to either replace the inner part of the pants with leather, or try spending more time engaged in activities that don't require (her) thighs to meet, i.e. sit around more.
Though not nearly the same as saying that autism is a huge part of the outlook of the person afflicted with it, the side-effects could be the same. Just as people who are overweight could consider it OK to be unhealthy, people who have autism could consider it OK to go without treatment and cause difficulty for the people around them. It's a lose-lose situation in both cases.
Posted by fil (Member # 5079) on :
Syn, I hear you. Those are great articles on the website, too. I think shock treatment for folks with autism or other disabilities is a pretty rare thing. If it happened around here, someone would lose their job or end up in jail. There is only one thing where I hear shock treatment is still used and it is used with some people with epilepsy to "reset" the brain's electrical patterns. This is something done willingly by the patient and is simply using electricity as a tool, not a punishment.
This site is a cool site. There is a great movement within the disability community of empowerment and self-determination and I am totally in favor of it. Where possible, when I am helping to support a person with disabilities, they are as much in control of how to direct support dollars as possible (for home modifications, choosing an agency to help with finding a job, etc.). The folks in those stories would do fine with that sort of independence. Most people with autism that I work with cannot.
I think we are saying the same thing. There are plenty of people with disabilties that aren't, as Ryuko pointed out, defined by their disabilities. This is cool when it happens.
And it is cool if you just want to stop talking. I worked at a home in Southern Ohio with a gent, then in his mid 50's, who stopped talking at age 10 or so. From what I have heard, he started talking about 4 years ago (6 years after I left). He was pretty bright and seemed capable and his choice not to talk is cool, but an entire world had to be built around him to support that choice/disability/whatever. The autistic person who chooses not to talk or who can't handle a "typical job" needs the same sort of support. I have helped out a guy with aspergers. He is probably on paper a genius level IQ. He can look at a map once and then memorizes it. He is a walking and talking "Mapquest.com." In fact, we tried to set up a local job just to do that...a call-in map service "Hey, I am lost and at the corner of such and such...how do I get to..." He could do it, but his disability reared its head too often and he couldn't stay focused long enough to do it. He does have a PT job at a Travel Agency, sorting maps and such. But he has to have a staff person with him around the clock or he will get on a bus and go to wherever. Which is fine, except he has left Cleveland and ended up in Pittsburg, Chicago and Detroit...usually arrested, because he had no idea what to do when he got there and he "went off" on bus attendants, other passengers, etc.
The point is that he has a cool life, mostly, but with a lot of support. Tito in the story is cool but he requires a lot of support as well. Which is cool. I am all in favor of helping people find a cool life to use their gifts and find what works for them. But with a person with autism, that will require more support than someone without autism.
Which takes me back to the original thesis of putting autism up with homosexuality. I think we can both agree that if the "treatment" options for people with autism are done without consent of the person or are in any way punitive that is inappropriate and harmful. But people with homosexuality have yet to get that kind of treatment, as a large group. Sure, homosexuals have to fight off their fair share of folks who stereotype them, as well as those with autism, but stereotyping happens with everyone! Older folks have to deal with stereotypes (grumpy, old fashioned, inflexible, can't drive, etc.) or (in honor of Mr. Reagan) black women who are single mothers have their fair share of stereotypes (lazy, welfare queens, quota queens, etc.). I think there are reasonable comparisons with these last two and homosexuality but I still have a hard time seeing the connection with autism.
Cool discussion on autism, though!
fil
Posted by pooka (Member # 5003) on :
Know anyone with autism? I don't agree with shocking people but I don't think it's wrong to use cognitive/behavioral therapy to modify them either. My niece has "improved" a lot with intervention. Since her parents both have autistic leanings, I think this is much better than just letting her and them follow their own way in letting her do as she pleases (such as playing on the computer or watching videos all day).
My own daughter has some symptoms and I'd like her to modify them, if she can, to not be as different from her peers. Are any of your links helpful in that or are they only geared to make modifying autistic symptoms appear monstrous?
Posted by fil (Member # 5079) on :
Ryuko, the "fatso" thing is almost enough for a new thread. As a person struggling with weight (was a skinny minny for first time in 20 years a year ago, but "fell of the wagon," dang it) I have a hard time with the "accept who you are" thing with weight. As a nation, we are huge and the health implications of excessive weight is horrendous (and costly for both the individual, those around them and to some extent, the rest of society). I don't ever want to be comfortable with being unhealthy. Sure, when I got my weight to the point where I was in great shape, running, low BP, etc., I didn't mind if I had a little middle age paunch. I can live with that. I can't live with the time where I couldn't see my toes or couldn't walk up stairs, though, and I don't think we should be totally into saying this is a good healthy self image.
This "Fat!so" thing is pretty ugly. Not in a "that's an ugly person" thing because being larger doesn't mean you are ugly. It is ugly in the sense that being unhealthy is now considered a "norm." Being overweight and having related medical issues or being addicted to food is not normal or healthy. It would be like saying "I am a functioning alcoholic and I am fine with that." No way.
But this is off topic to rant on this. It is a good comparison for the autism discussion, though, as autism.org really is about "I am autistic, hear me roar!" And I mean that in a good way. But being autistic isn't unhealthy, unless that person really can't take care of basic life needs. Same with a person who is overweight. I now have slightly more than a paunch but I still can keep up with my 5 year old all day, go for long walks with the dog, do housework, have a job, and my BP isn't back up. So that is cool. But if you need a cane to talk due to weight, have to rest after going up one flight of stairs, can't keep up with your little ones, then there is a problem. For a person with autism, that is okay because there isn't any choice in the matter...it is who they are. With an overweight person, even if there is a struggle (and boy do I know) it is still in the realm of choice and personal responsibility to fix it.
Good discussion...kept me from eating second bowl of cereal and made me vow to take longer walk today!
fil
Posted by sndrake (Member # 4941) on :
quote:Syn, I hear you. Those are great articles on the website, too. I think shock treatment for folks with autism or other disabilities is a pretty rare thing. If it happened around here, someone would lose their job or end up in jail. There is only one thing where I hear shock treatment is still used and it is used with some people with epilepsy to "reset" the brain's electrical patterns. This is something done willingly by the patient and is simply using electricity as a tool, not a punishment.
fil,
first of all, there are a significant number of people who have been subjected against their will to the "therapeutic" (ECT) shock regimen you described - and who view it as a torture they would do anything to avoid repeating. To be fair, there are other people - even those subjected to it against their will - who view it as something that saved their lives. And just about everything in between, of course.
The other kind of shock treatment - using devices to administer painful shocks to control behavior - still occurs. There's even a large provider operating in Rhode Island and Massachusetts that specializes in it. And there are only two states that expressly forbid the use of pain as a "tool" in behavior modification - Pennsylvania and Nevada.
Most people use principles of behavior modification in tandem with other modes in teaching and training. However, it's also true that there are some regimens of strict behaviorism that bear distinct similarities to a secular and scientific version of exorcism - and it ain't any prettier than the religious kind.
I'll see if I can dig up some links later - the places that actually use shock and strict behavioral approaches are a little shy in their language in describing what they do.
[ June 14, 2004, 01:38 PM: Message edited by: sndrake ]
Posted by pooka (Member # 5003) on :
I think accepting where you are is important in terms of change coming from within. Of course, I'm still against the general tenor of this thread which is that autism is within the spectrum of normal and "shouldn't" be changed.
What is someone has OCD which expresses as bigotry? Should we just celebrate their diversity as well? P.S. What about eating disorders? Can suicide be viewed as an alternative lifestyle choice?
[ June 14, 2004, 01:49 PM: Message edited by: pooka ]
Posted by saxon75 (Member # 4589) on :
I have the same question (I think) as pooka. I don't know much about autism, but I do know that there is a pretty large range of symptoms and degree to which those symptoms manifest. At what point would treatment or care be necessary? And outside of autism, what distinguishes a behavioral/psychological variation from a disorder? Do any behavioral or psychological conditions require treatment? If so, why some and not others? If not, why not?
Posted by Synesthesia (Member # 4774) on :
Not really, Pooka... But, it depends on what methods are used to treat it. For example, I am currently reading about cutting which is the practice of inflicting wounds on oneself. It is a complicated problem. Just like telling an anerexic to eat or forcing them to eat against their will might make things worse, hiding sharp inpliments isn't enough. Somehow, the real cause of the problem has to be treated instead of the symptoms. Such as WHY a person is suicidal or why someone has decided to cut themselves repeatedly or not eat. That is a difficult thing, these symptoms seem to be a physical manifestation of a deeper pain. In some ways it's simple. If the activity hurts the person, if it gets in the way with leading an active life the way OCD can then it needs to be treated. If the autism causes a person to be violent, that needs to be treated. If a person is banging their head against the wall they need to find another sort of outlet. Cutting is a complicated problem. I have recently discovered that if I am too angry I can get self destructive in the form of hitting the walls and possibly scratching myself up... a bit frightening. Everyone seems to have some sort of problem that needs to be fixed. Fears and phobias that keep a person from leaving the house, cripling emotional disorders. Mostly, what I want is for the stigma of such things to clear enough to understand them in their real light so that people who have them can get the help they need.
Posted by sndrake (Member # 4941) on :
quote:I have the same question (I think) as pooka. I don't know much about autism, but I do know that there is a pretty large range of symptoms and degree to which those symptoms manifest. At what point would treatment or care be necessary? And outside of autism, what distinguishes a behavioral/psychological variation from a disorder? Do any behavioral or psychological conditions require treatment? If so, why some and not others? If not, why not?
Sax,
Those are excellent questions!
And they are not going to be answered to anyone's total satisfaction any time soon - but I think you probably know that.
They're important questions, though - and ones that we should be aware of. Definitions of what is a "disorder" and what requires "treatment" change over time. And it's probably a good thing there isn't universal agreement on the issues.
One relatively new element in the mix is the pretty aggressive marketing tactics of pharmaceutical companies trying to expand notions of what is "pathological" and in need of "treatment" - if you've seen any of the very vaguely worded tv commercials regarding "social anxiety," you'll have seen a good example of this.
(I might take a stab at starting thread sometime on overlaps of social anxiety/panic/performance anxiety and other stuff not really well labeled sometime for personal reasons - might be a good discussion. Or not.)
Posted by saxon75 (Member # 4589) on :
Autism has been a subject closer to the front of my mind these days because Juliette has a boy with autism in the K/1 class she's teaching. This student is very high-functioning, but he still requires a full-time personal aide, and even though he is very good at reading and retention of information, he is not a very good critical thinker. He has very different abilities and needs from the other children. This doesn't make him any sort of freak, but he definitely needs more personal attention than a "normal" student. His behaviors are also not the same as the other students, in ways that seem to me (second-hand, anyway) more than just physical behaviors like rocking or hand-waving.
I'm wondering what separates autism from something like, say, schizophrenia. Let me begin by saying that I know next to nothing about schizophrenia, and what little I do know is likely wrong, having come from watching A Beautiful Mind. But it seems like a not-totally-unreasonable comparison. As I understand it, both are neurologically-based. Both have to do with behavior and perception. Both have physical symptoms. Both occur in varying degrees of severity. Someone like John Nash can, with the aid of medication, lead a reasonably "normal" life. Others cannot. Should we treat schizophrenia? Should we treat autism? If not, why not? If so, why? Is the comparison invalid? If so, why?
Posted by Telperion the Silver (Member # 6074) on :
Great discussion. My cousin Amanda has Autism and my Aunt, her mom, has become an expert in the field (go fig!). I'm still undereducated, but I'll be sure to talk to her soon so I can contribute to the conversation.
As for being gay...it is the same as breathing for me and is a non-issue (now that I'm out it doesn't matter anymore).
Posted by fil (Member # 5079) on :
quote: (I might take a stab at starting thread sometime on overlaps of social anxiety/panic/performance anxiety and other stuff not really well labeled sometime for personal reasons - might be a good discussion. Or not.)
I for one would think this is a GREAT discussion. Not only anxiety/panic/performance, but just about every aspect of our life can be medicated to make it better, last longer, look nicer, work more like it should, etc. Overmedication is a huge issue and I think parents with children who are autistic are just as vulnerable to this mentality. Every year there is the new "miracle" cure/drug/treatment that everyone just has to have/do.
But as a separate topic, I think it is great. The anxiety commercials are my favorite... You could replace whatever drug named with "booze" and it would be just as reasonable.
...and we tell our kids "just say no to drugs."
fil
Posted by fil (Member # 5079) on :
Dr. Snake (whoops, wrong thread), I mean sndrake...
I have no doubt there are still places doing horrid things, but even you noted those places even have a hard time advertising it. I think it is way more likely to be the exception, not the rule.
More prevalent is medication (which I have not seen too often to be effective) and behavior management/modification.
More to the point, though, is that generally nasty things like punitive shock treatment most likely happens in a vacuum, not out in the sunny open world. Meaning, a person with a strong circle of support...parents, siblings, relatives, friends, teachers, etc. won't sit idly by while such things were being used. More at risk would be those folks who lost their parents, grew up in an institutional setting, and have only other "professionals" around the table making decisions on what treatment is needed.
fil
Posted by fil (Member # 5079) on :
quote:As for being gay...it is the same as breathing for me and is a non-issue (now that I'm out it doesn't matter anymore).
Thanks for bringing the discussion back to the original thesis of this thread. Do you feel you need treatment? Do you feel society wanting to give you treatment?
fil
Posted by fil (Member # 5079) on :
quote: I'm wondering what separates autism from something like, say, schizophrenia.
About 15-20 years. Autism sets in prior to age 3 and schizophrenia happens after adolescence, often in the late teens or early twenties. One is a person who is born with a condition that effects his development from nearly birth, namely autism. It effects how you talk, walk, learn, interact with people, etc. Schizophrenia is taking a "normal" or "typical" person who grew up without the effects of mental illness or disability and then hitting them with a whammy that COMPLETELY changes who they were to some new person.
Schizophernia also has pretty rigid diagnostic criteria where as the disorder called autism has gobs of different criteria.
An example would be Ray Charles, may he rest in peace. Ray was born seeing and lost his sight at age 7, I believe. He saw. He knows what vision is, knows the abstract thing called "Color" (which cannot be described without "seeing it"), etc. Hellen Keller, however, was born blind and never knew color, light, dark, etc. She grew up that way and it effected her development from the moment she was born. Ray, on the other hand, had to adapt when he lost his sight. Change who he was and how he perceived things. With autism, they don't "know" how to see things or react to things any different than how they always have. With schizophrenia, they knew and lived times where they didn't hear voices or were paranoid about someone out to get them.
Does this make any sense? I ain't a doctor or a clinician, just giving some differences that I can see.
fil
Posted by rivka (Member # 4859) on :
Helen Keller was most certainly not born blind. She was old enough (19 months) that she had started talking (baby words, like "wah-wah" mostly) before the near-fatal bout of scarlet fever that stole her sight and hearing.
Posted by Synesthesia (Member # 4774) on :
Helen Keller wasn't born blind. She had scarlet fever or something like that. That's why before she went deaf she could say "water" clearly.
This article is from the 90s, but this sort of thing still happens-
D'oh! My apologies for bad history. I had always assumed she was blind since birth. But my bigger point (bad example aside) still stands. Autism, which occurs at the beginning of the development cycle is very different than schizophrenia, which occurs later (in some cases, much later) in a person's developmental cycle.
Thanks for linky's and pointing this out!
fil
Posted by sndrake (Member # 4941) on :
quote:More to the point, though, is that generally nasty things like punitive shock treatment most likely happens in a vacuum, not out in the sunny open world. Meaning, a person with a strong circle of support...parents, siblings, relatives, friends, teachers, etc. won't sit idly by while such things were being used. More at risk would be those folks who lost their parents, grew up in an institutional setting, and have only other "professionals" around the table making decisions on what treatment is needed.
fil,
for the facilities in Massachusetts and Rhode Island, it's mostly NOT wards of the state that get placed there. The placement is done by families who are fiercely devoted to the decsions that they've made - the decisions to place their child out of home (even out of state in some cases) and to subject them to what we would describe as torture if it was anyone else getting treated this way.
A few years ago, Massachusetts got into trouble for trying to shut down the "behavioral programs" - they were sued and lost. (evidently judges think "torture" is something that is a term we should only apply to nondisabled people)
The state was also forced to start placing people in these facilities - if they were wards of the state needing placement or the family had no preference.
It's not under the carpet at all.
But even outside of these facilities, many behavioral programs run on a "compliance" model - where the program consists of "compliance drills." Unfortunately, I've actually had some peronal experience with some of this - as being the one insisting on compliance and administering "aversives."
[ June 15, 2004, 04:53 PM: Message edited by: sndrake ]
Posted by sndrake (Member # 4941) on :
I posted some info on "aversives" and the details of the death of Linda Cornelison before, but the thread in question is no more.
Here's a little sample of what I mean by a secular brand of exorcism:
quote:Victimization of 19-year old Linda Cornelison called "inhumane beyond all reason"
The following report is excerpted from recent bulletins of the Coalition for the Legal Rights of People with Disabilities (also reported in The Boston Herald, Feb. 15 and 23, 1995, and by AUTCOM)
The Disabled Person's Protection Commission (DPPC) and the Massachusetts Department of Mental Retardation (DMR) released the report of an extensive investigation into the death of a 19-year old woman who died in 1990 at the Judge Rotenberg Center (JRC, Formerly the Behavior Research Institute, or BRI). The investigation, which included interviews of 72 witnesses, review of hundreds of documents, and reports by four experts, concluded that JRC/BRI direct care staff, nursing staff, and administration, as well as several specific staff members, took actions that were "egregious" and "inhumane beyond all reason" and constituted not only violations of legal standards but violations of "universal standards of human decency." Abuse and violations of DMR regulations were also found in the woman's treatment by JRC/BRI prior to her death.
The Judge Rotenberg Center has been the source of controversy for years because of its heavy use of "aversives," which involve physically punishing people with mental retardation or autism to influence their behavior.
The woman, who was mentally retarded and could not speak, began showing signs and symptoms of illness on December 15 and 16,1990: she refused her food (she had always had a hearty appetite), she was restless and fidgety and made unusual noises. By December 17, she was pale, disoriented, had "glassy eyes," and kept attempting unsuccessfully to vomit. During this time, because staff mistook her attempts to communicate her pain and discomfort for "target behaviors," she was punished repeatedly -- forced to smell ammonia, spanked, pinched, and forced to eat "taste aversives" -- either a vinegar mix, or jalapeno peppers or hot sauce.
She received a total of 61 aversives on the day that she died.
Some more toward the end here:
quote:The program allowed the 19-year old to be limited to as few as 300 calories a day, 20% of her minimum calorie intake for the day. A dietary expert consulted by the investigator stated that it was impossible to maintain the woman's health on 300 calories a day, and that she needed at least 1737 calories a day to maintain her lowest acceptable weight, 108 pounds. Although JRC/BRI was under a court order to ensure that her weight did not slip below 90% of ideal body weight, the autopsy report showed that the woman, who had weighed 125 pounds when she was put on the food program less than a year before her death, weighed 90 pounds. In less than a year, she had lost 35 pounds, 28% of her body weight.
The program allowed the 19-year old to be limited to as few as 300 calories a day. She was deprived of food for merely having the wrong answer on the computer.
In addition, although DMR regulations permit the use of intrusive and severe aversives such as spanking and ammonia for "seriously dangerous behaviors," the woman was punished when she displayed the following behaviors: "Drooling, spitting, nagging, stopping work, refusing, silly laughing. She was deprived of food for merely having the wrong answer on the computer."
Posted by Dagonee (Member # 5818) on :
I still say there's got to be a way to shut these places down. Maybe it'll be a long-term project.
Posted by Synesthesia (Member # 4774) on :
Silly laughing? What the hell is wrong with silly laughing? It's got to stop. It just has to. Making people smell ammonia. What good does that do? That's horrible! It's got to stop. Parents trust these people because they are "experts". It's just like those Spock types in the 50s where peopla had all sorts of mixed up advice about child reering. Pick up the child a lot. Don't pick up the child a lot. Put the kid on the schedule. Do experts REALLY know what they are talking about? If a parent is having trouble with their autistic child misbehaving, yelling, throwing tandrums and hitting themselves they are going to trust some expert who will say, I know how to handle your child. I know what to do. They won't question sitting a child down and forcing them to do something tedious and stupid, nor will they question restraints. Parents need to get educated and so does the rest of society so that this stops happening.
Posted by fil (Member # 5079) on :
Note to self: Stay the hell out of Massachusetts. This is really difficult stuff. Ohio had these types of places and while I know abuse still happens, it isn't institutional any more (not since the 70's when the larger ones were shut down). I am so surprised that there are places that are run this badly at such a huge level.
Thanks for the info.
fil
Posted by Synesthesia (Member # 4774) on :
*lives in MA* I've got to do something about this somehow...
Posted by fil (Member # 5079) on :
I am sure there is tons being done. It just takes finding one of those many organizations and hitching on for the ride to help out.
I would start with THIS website. "Arc" groups come from an old titled organizations called "Association for Retarded Citizens." Pretty old-school name but the initials "ARC" were always joined with "Advocacy" so they just simplified it to "Arc" and don't use it as an acronym any more. Check it out. Usually one of the better clearing houses for information on helping out in the state on these types of goings on.
I would love to know who you hook up with or what organization you link up with in this process.
fil
Posted by fil (Member # 5079) on :
Wow, talk about kismet or synchronicity or what. This topic has been good for me as it allows me to talk about things I don't get to do, even though I work to support people with disabilities daily. We work in places with abuse, neglect, poorly run programs, etc., etc. But for the most part, we worry more about folks having enough to eat, to pay their bills, to have fun, to get a job, etc. Thankfully, the kind of stuff that most everyone worries about.
Anyway, I was talking with a co-worker who has been stumped trying to help find a place for a recently adultified 18 year old. Another thread can deal with this issue, as it is a problem with kids with and without disabilities, but my co-worker's person just turned 18. He was in custody of the local Child Protection Agency because he was removed from his home due to abuse/neglect by his birth mother. He was never able to return. At 18, though, regardless of the child is "ready" they are adults and CPA is finished and wipes their hands of this person and moves on.
Which leaves some folks in a pickle.
Anyway, that is another discussion. The short version is this young man is diagnosed with autism and has displayed over the years very destructive physical aggression towards self and others. The current place he is living (out of state from us) is great, but they only serve folks up to 18 and now he has to go. And in the continental 48, not a single facility has an opening or is willing to work with supporting him.
Except for one: Judge Rotenberg Center in Mass.
Oh my. So I kind of freaked my co-worker out by talking about what went on there. Granted, the death there was nearly 15 years ago, but still.
I checked their website and apparently the doctor that started the program is still involved (as of a writing in 2002). Dr. Michael Israel is a student of BF Skinner, a popular name in our Psych. 101 classes in college. He opened some facilities in Rhode Island and Mass. and has been unpopular ever since because of his belief that strong aversives can be an effective way for people with severe behavior issues to get under some control.
He still advocates for shock treatment by remote control.
Now here is the thing, though...I still stand by my claim that this is VERY much the exception, not nearly the rule. Israel is seen by many (if the brief bit of Googling was accurate) as anachronistic and very "old school" and abusive. Yet the school also does things that other places refuse to do. The school uses little or no psychotropic medications (which, in the case of autism, is merely chemical restraints), little or no physical restraints and lots of positive reinforcement programming. Still, I have a hard time with electric shock, though.
But not to be misinformed, I did order from their center a video that they send for free that shows before and after treatment movies of students who have been in their program. if it is interesting, I will let folks know.
Anyway, thanks for the posting as it is oddly immediate to me now and not merely a discussion. My co-worker will be happy to be armed with new information to better support this individual.
Some sites of interest I found from the company itself:
I love the way they understate everything. Is there a way to find out why they shock these clients at their place? For what reason? I'm sure they'll try to say it's for their own good, but something seems wrong to me. Shocking people. Inflicting pain on them for the smallest infraction. It seems wrong to me... Wrong and abusive. Even if they don't use drugs and restraints (which a person i met at a meeting said was not the case) The fact that they are shocking people seems... to me like a victorian asylum updated for the 2000s with technology instead of lobotomies... It's still seems wrong, regardless of the results.
*Can't get over the cute, old music they play on the JRC site*
Posted by fil (Member # 5079) on :
quote: *Can't get over the cute, old music they play on the JRC site*
Yah, that was definitely creepy.
As for drugs and folks with autism, I really haven't seen any drug that 'treats' autism, only the symptoms. For example, anti-depressants actually work with chemicals in the brain that, if out of balance, cause a depressive state. The right medication balances this. There is no such chemical component for people with autism, that I know of. Mostly what I see is a cocktail of medications that dope up a person enough that they aren't hanging from the rafters by their feet but not walking around in a stupor. I am not a big fan of using medications in that way, but that seems to be the way of it with many doctors. We replace physical restraint with chemical ones.
fil
[ June 16, 2004, 11:13 PM: Message edited by: fil ]
Posted by Mabus (Member # 6320) on :
Fil, I have recently heard of a place called "Rainbow Omega", which works with disabled adults. It was long enough ago that I don't remember much about it, and it may be too far out of the way for this patient. Or perhaps you've already checked with them and they won't work with him. But I thought I should mention it, just in case.
Rainbow Omega put on a glowing presentation at my local church a few months ago. I haven't heard anything bad about them, but of course you might know something I don't.
Posted by fil (Member # 5079) on :
Mabus, I will pass this on to my co-worker. The big deal will be if they can support people with severe mental health issues on top of significant developmental delays. That home looks like a wonderful place but I wonder if they have much in the way of treatment of mental health issues. My co-worker will find out!
Thanks for posting this!
fil
Posted by fallow (Member # 6268) on :
I have a question regarding autistic folks. Having had minimal experience with them, are they often gifted in some way or are they, by and large, simply creatures of "high maintenance" (behaviorally irritating)?
fallow
Posted by ctm (Member # 6525) on :
Falow, therre is a real spectrum to autism, and those on the "higher" end do tend to be gifted in some ways, but not always.
I've a friend with a fairly high-functioning autistic child, and they have used ABA for several years. It's pretty intensive, 30-40 hours of therapy a week, before he was in school it was all done in the home. It's definitely had an effect on the kid, but I've always wondered if such intensive therapy was necessary or if he would have done well with less, too. It pretty much took over ther lives for a while, but they felt it was worth it.
Posted by fil (Member # 5079) on :
fallow, ctm has it right. As a spectrum disorder, some folks with autism you may not realize are autistic (like Ms. Grandin's joke about NASA scientists) and others will be so compromised by their inability to interact with those around them you might think it was some other syndrome. The "Rain Man" type person who can count toothpicks as they fall to the ground or count cards in Vegas aren't the norm, though there are those folks with these types of things. It is mostly an adaptive and communication disorder with all sorts of variety and effects on the person and those around them.
fil
Posted by sndrake (Member # 4941) on :
quote:Now here is the thing, though...I still stand by my claim that this is VERY much the exception, not nearly the rule. Israel is seen by many (if the brief bit of Googling was accurate) as anachronistic and very "old school" and abusive. Yet the school also does things that other places refuse to do. The school uses little or no psychotropic medications (which, in the case of autism, is merely chemical restraints), little or no physical restraints and lots of positive reinforcement programming. Still, I have a hard time with electric shock, though.
But not to be misinformed, I did order from their center a video that they send for free that shows before and after treatment movies of students who have been in their program. if it is interesting, I will let folks know.
fil,
You don't really have to see the video (not suggesting you shouldn't, though) to know in advance what it will show, do you? The "before" and "after" will be very much like the ones you see in commercials for exercise equipment and diet plans. They may even say "individual results may vary."
That's not to say that pain and deprivation techniques don't influence behavior. Of course they do. We know that with nondisabled people, those same techniques can eventually elicit things like false confessions.
As to the "positive reinforcement" - remember the "specialized food programs?" Every bite of food and much of what you drink is counted as a single reinforcement. When your individual bites of food are counted as individual rewards, it's easy to claim that the program is based on mostly positive reinforcement.
Also, and maybe this would be best to handle in private email, I'm pretty optimistic I could get some resources at national developmental disability organizations helping to find an alternative placement for this guy if they knew they would actually be depriving Matt Israel and the JRC one more victim. I'm talking mainstream advocacy organizations as opposed to the "fringey" kinda folks I rouse rabble with.
Let me know.
Posted by Synesthesia (Member # 4774) on :
I might be missing something... but... They are counting individual bits of food as a reward... So does that mean if the person doesn't do what they want them to do they don't eat? Sorry if this is a stupid question, but I'm trying to understand just what ABA is about...
Posted by fil (Member # 5079) on :
sndrake, I have no doubt what I will be seeing when I get the video, but color me curious. Actually, I met with my co-worker today and she has found out about 5 other places since she and I talked two days ago...which was amazing, because so many had said no for the last few weeks. Thanks for the offer, though, and believe me, I won't forget and look for that e-mail in the future! I work with some of the nicer advocacy groups locally as often as I can and my favoritest person I had the honor to work for (who sadly died in the fall last year) introduced me to the rougher and tougher advocacy groups. Amazing woman. But any ideas when placement gets tough is alwasy appreciated.
fil
Posted by fil (Member # 5079) on :
Syn, if my foggy behavior supports memory serves, ABA is "Applied Behavior Analysis." What Doc Israel is doing is really just an extreme (or abusive) version of this, I suppose. It is (I think) a generic title for closely looking at a person's behaviors and trying to minimize (reduce or make extinct) the harmful ones while encouraging (developing, rewarding) the positive and healthy ones. Everyone does this as a parent, whether they think they are or not. We do it with kids, pets, employees, and so on. That 30-40 hour a week intensive programming the above poster was talking about may be (we hope) a strictly positive reinforcement plan. Most plans will typically ignore negative behaviors (if they aren't too harmful) just a parent might ignore a child's tantrum.
But where some folks can go a while without positive reinforcement for healthy behavior (say, taking son out for icecream if they don't get in a fight with his sister for a week) some folks can't go 5 minutes without some sort of reinforcement. Thus these intensive programs to help people get control of their own behavior.
It really can sound horrendous, even if all positive and healthy because it sounds so invasive...but having seen how difficult it is to take care of a person with significant behaviors (autism or otherwise), you can't simply step back and say, "meh, that is just who they are."
We work to support people who abuse themselves so badly they need helmets because without them, they literrally bash their brains in. They bite themselves so hard, they leave permanent scars. Or they hurt others around them so often, younger siblings have to be sent to live with relatives. It ain't easy.
This stuff that Israel proposes goes a bit too far, though, especially if the person can't volunteer for it.
Because, we have to face the fact that people do willingly submit to this type of extreme treatment when a behavior becomes too unhealthy. The best example is the people that will actually modify their stomach by closing off a portion of it so it can't hold more food. Why this extreme response? Because they can't control their own eating behaviors. People will self medicate and rish all sorts of medical side-effects to stem off some portion of themselves that they feel out of control about. The difference is that with me, I would be consenting to this while the person with autism typically is not. Or more accurately, cannot.
fil
Posted by sndrake (Member # 4941) on :
A bit too far???
fil, you have a gift for understatement.
The logic of those who advocate "torture" for some people with developmental disabilities is a parallel logic to arguments in support of other uses of torture.
Mostly, it relies on the "last resort" framework. I think you're pretty familiar with the rationales laid out for justifying torture in some cases - the only way to get information in a timely way that will save lives and variations on that theme.
Advocates of aversives and, for that matter, the American Psychological Association, think the discussion should revolve around what kinds of aversives are appropriate in a given situation. The issue to them is one of clinical judgment and standards, rather than human rights. And they'll typically use the real or hypothetical case of a person whose situation is so dysmal no one could see any other way out of the situation other than using torture on the person to control behavior.
Calling something a "last resort" is an exercise in self-reinforcing circular logic. Typically, once has settled on that course, the only avenues that get explored from then on are avenues of the aversive kind, since, as you told yourself, you only turned to inflicting pain as a last resort.
Let's go back to "standards," though. In an infamous incident, the staff at BRI (now named the Judge Rotenberg Center) subjected one person to approximately 5000 shocks in a 24 hour period.
I had the opportunity to challenge an advocate of aversives, Tom Linscheid (he's in your state, fil), who was a coinventor of the original shock delivery system called the SIBIS about this.
It was on a listserv that was also being broadcast on usenet as bit.listserv.autism - which means his reply is still available through google.
quote:As to the issue of 5000 shocks in one day and my unwillingness to comment on that and whether "behavioral theory" supports that. Again, behavior analysis as a science is involved with the demonstrations of functional Relationships between behavior and environment. Knowledge of behavioral principles can be "applied " in many forms without changing the theory. Electricity is electricy regardless of how it is used. The relationships between resitence, current flow and voltage are not changed by whether they are applied for good or evil. So again, the question of 5000 shocks in one day is a question of application not of theory.
If the question is, can 5000 shocks a day ever be justified as an application, let us look at a couple of senarios. The first hyothetical situation; the baseline rate of a severe self-injurious behavior is 20,000 per day, when we begin to treat the behavior with contingent electric shock, the rate is 4000 the first hour, then 1000 the second hour and then the behavior does not occur for the remaining 22 hours of that day. I can see where this may be considered acceptable by many, especially if the behavior continues at a very low or zero rate over subsequent days and weeks.
Senario number two. The baseline rate is 5000 per day and once treatment starts there is no change over the course of the entire day and therefore the person receives 5000 shocks. In this situation, continuation of the treatment is not justified because it is not effective.
My point in not commenting on the newspaper article is that I did not know the circumstances of the treatment case, especially as to baseline rates and rate of behavior accross the day. Without this information it would be hard to answer the question of whether the reported number of shocks was justified. If I were the parent of the person described in the first scenario, I would be happy and relieved that my child was no longer engaging in SIB 20,000 times a day, as the parent of the person in the second scenario, I would be dismayed that the treatment didn't work and that my child had to receive 5000 shocks.
The point is, without the knowledge of baseline rates and rates of behavior during the treatment day, it is not possible, from my point of view, to either support or not support the application of 5000 shocks in one day. If you are opposed to contingent electric shock as a treatment then knowledge of its effectivenss is irrelevant and you will be opposed regardless of details. I do certainly agree that when numerous aversive stimuli are administered in one day, the therapists are accountable for justifying the practice but I do not agree that it is automatically a bad practice - it depends on many factors, not just the number.
So, what he's said is that he's absolutely unable to set even the most minimal set of boundaries in regard to when "therapy" slips over into abuse.
Assuming no sleep or bathroom breaks for the individual, this involved an average of about 3.5 shocks per minute! 15-20 seconds to process the shock, figure out what it was in response to, and formulate a response. For someone with significant neurological disabilities.
In case it's not clear, I have very little respect for Tom Linscheid, Matt Israel, or any of the others of their ilk who claim the debate should be about "standards."
[ June 17, 2004, 05:31 PM: Message edited by: sndrake ]
Posted by fil (Member # 5079) on :
Howdy, sndrake...amazing follow up. I did underestate the concern, for sure. That stuff is amazing and I am surprised that Israel and his ilk have so much support in some parts of the treatment community. Thankfully, that just ain't happening around here (well, outside of people actually abusing folks and being arrested for it...that, sadly, happens everywhere...working on such a situation like that right now).
I wanted to give you some interesting follow up (okay, interesting to me, anyway). So, to follow up on my follow up, my co-worker took the concerns I brought from folks on the Hatrack with accompanying documentation. My co-worker presented (in cool tones, not my overheated "Oh my freaking God...that place tortures people!" sort of way I got after reading sndrake's stuff.). Still, the concerns were brought up but the mother wanted to give the place a fair shake and got a "virtual tour" of the place.
Check this out for a sales pitch...
Each room in the facility at Judge Rotenberg is designed by a unique artist and is the coolest of the cool. Each child's room has a TV, satellite receiver and DVD player. And so on, and so on... A list a mile long of "cool stuff" that, thankfully, our clinical director of psychology called "a bill of goods" and nothing more useful.
They are an extremely pushy agency, too. My co-worker expressed interest after they responded to her case application...which they took as a verbal contract and skipped over my co-worker and called our Superintendent to say "Hey, where's the written contract??!!" as if it were a done deal. They cost more than just about any treatment agency in the country...kind of the country club of treatment facilities...
Also, when asked by the staff at this agency "what does _________ (insert name here) like to do?" my co-worker told her "talk about sports and politics." The staff was very excited and said "we can make that a part of his reward system!" as if to say, you get meaningful conversation only as a reward, not as expected treatment. It just isn't about shocks and withholding food...it is about withholding all meaningful things! Yipe!
And get this, even with the warnings, the mother of the young lad in need of placement LOVED the place! Yikes! Now I have an idea how they can continue to run programs that are still considered abusive. They are filthy rich. Sheesh. Luckily, our Supe is pretty shrewd and when asked if we would pay the nearly $500/day (you read that right) fee...he kindly said, "I am sorry, our connection is breaking up" as he crinkled a piece of paper by the receiver.
Okay, he didn't do that...but he did say "that is ridiculous." So no money from our agency to support theirs, at any rate (unless mom wants to pay it alone...and even as a good lawyer, she ain't $500/day good).
So, to those that opened my eyes to this agency (albeit, not knowing that it was actually serving a bigger deal than just good discussion on the internet) my thanks and my co-worker's thanks.
Truly the coolest...
But now, another discussion would be "how far" would or should a caregiver go to ensure the health and safety of a child or adult with autism? When is treatment torture? I know 5000 shocks a day or a restricted diet fit the torture bill, but what is a "last resort" when working with someone who is abusing themselves or others to the point of serious damage?
fil
[ June 23, 2004, 09:55 PM: Message edited by: fil ]
Posted by Synesthesia (Member # 4774) on :
$500 bucks a day? Does she know that they shock people there? Did they mention that? And just what do they mean by award system? I don't understand this place fully.. perhaps it's so bad my brain is having trouble grasping all the details
So I'm not an expert. I don't enough about psychology, in fact I have some doubts about it... Nevertheless, I cannot understand the logic in using PAIN on a person who's self abusing. There has to be another, gentler way to handle it. You're talking about a young person banging their head against a wall, especially during unfamiliar and stressful times. What if some effort was taken to lessen stress? Difficult, but not impossible. What if a lot of autistic people behave violently due to something that can easily be fixed? Wouldn't it be better to try to figure out how to teach the child to communicate their needs rather than shock them? Prehaps I am ignorant... I am trying to cure that, but it still bothers me.
Posted by fallow (Member # 6268) on :
ctm & fil,
Thanks for the responses. I'm curious about clinical diagnoses (shrinking) vs. romanticizing. Like I said, I've never had any direct personal experiences, but a friend of mine was a nanny for two boys, the older was autistic. From her comments it sounded like the younger boy was exceptionally bright while the older brother was pretty much just an infantile pain in the arse night and day ("pampered", "spoiled-rotten", etc, if it weren't for the clinical assessment). Another friend of mine looked after an autistic boy for a while and showed me the collection of tin foil animals he'd made for her. Looked like genius to my naive eyes.
fallow
[ June 23, 2004, 11:03 PM: Message edited by: fallow ]
Posted by sndrake (Member # 4941) on :
quote:But now, another discussion would be "how far" would or should a caregiver go to ensure the health and safety of a child or adult with autism? When is treatment torture? I know 5000 shocks a day or a restricted diet fit the torture bill, but what is a "last resort" when working with someone who is abusing themselves or others to the point of serious damage?
I don't have the time or amount of sleep I need to reply adequately today. Went to an outdoor concert in our town - Koko Taylor is a performer many people told me I shouldn't miss, especially when its for free. (They were right, btw) Pretty sleep-deprived today and I gotta take off for a meeting this afternoon.
But...
The problems regarding "how far" and "what is allowable" isn't one limited to people with disabilities. For example, while some people don't accept the necessity of any form of physical punishment of children, there's a range that's accepted as lawful in our society. There's a neverending battle to figure out when and where a parent's rights end, and a child's rights to protection from harm begin.
The first thing, of course, is to try to establish some bright and clear lines about what is unacceptable. Child abuse laws fill that need, at least to a mimimum level.
Except for two states, we have not done the same for people with developmental disabilities.
I startle people on a regular basis when I assert that people with developmental disabilities are the only class of U.S. citizens that can legally be subjected to torture. That's not to say that torture doesn't happen in prisons and other places - but the only people with whom its use is sanctioned are those with developmental disabilities.
[ June 24, 2004, 11:59 AM: Message edited by: sndrake ]
Posted by fil (Member # 5079) on :
quote:Except for two states, we have not done the same for people with developmental disabilities.
When you wake up more, which two? (please say Ohio, please say Ohio, please say Ohio).
Center for Medicare and Medicaid Services, who oversees all of our programs (the ones paid by Medicaid, of course...which is most of them) has swept through our state and has laid down the law on setting up the sorts of guidelines, though. We had people on behavior plans in this state that had unclear parameters on how certain aversive behavior plans would work.
Aversive in this case can be holding someone to keep them from hurting themselves or others. When is that safety and when is that abuse? When is NOT doing that safety and when is NOT doing that neglect? That is a tough line to draw, especially when supporting people with significant behavior and/or mental health issues. Time outs are also aversives, I believe. I would shudder to think of any in this state that were as bad as the Mass. center we have talked about.
Get a nap!
fil
Posted by fil (Member # 5079) on :
fallow, I think you aren't seeing anything with naive eyes at all...you are just seeing two different people, that's all. People diagnosed with autism spectrum disorder are just as varied in talents and troubles as anyone without the diagnosis.
Spoiled kids with disabilities are just as common as those without disabilities. I think spoiled kids come from parents who are unable or are unwilling to give the children the needed boundaries in their lives. Same with kids with autism. The consequences can be just as damaging, too. It sounds like the "pain in the arse" kid fits this bill. I am not sure if it is as common now, but my parent's generation had a lot of guilt if they had a child born with a disability. Why? Most medical professionals prior to the 70's (and let's be honest, some are still around) would blame the mother for the child's disability.
"You must have done something wrong."
Or, in the case of autism, "You were too cold to your child." See Dr. Bettelheim's works from the 60's, as he advocated that it was parents that caused autism.
Because of this guilt, I have spoken to many of this older generation of parent that would "over compensate" with food, toys, "freedom" and so on...to the point where the child had no boundaries or expectations and were worse off for it.
Same with today. I think any child, disability or not, raised without reasonable boundaries and expecations are going to have a difficult time as they grow up.
fil
Posted by sndrake (Member # 4941) on :
quote:When you wake up more, which two? (please say Ohio, please say Ohio, please say Ohio).
Sorry, fil.
As I noted in a previous post, the states are Philadelphia and Nevada.
BTW, the attitude about using interests as "reinforcers" isn't unique to the JRC folks. Skinner-type behaviorists (and they are still overrepresented in the developmental disabilities field) seem to have no problem with doling out what may be a person's main connection to the world and people around him or her as "rewards."
Me, I look at it as an opportunity. If I'm able to engage in a conversation about Star Trek or James Bond movies with someone, it's possible that we might actually end up talking about stuff outside of their circumbscribed area of interest, if the relationship develops well enough over time.
Too often there's a subtext of control that dominates discussion of "behavior problems" - or at least that's what I've seen in my experience.
Here's an example:
We had a problem in a group home I worked at. The staff started collecting laundry at night from people's rooms. Then they'd wash it and dry it and put it back folded on the dresser.
One of the residents was a guy who didn't speak at all. He got very upset at this. He'd gather up the clothes in the morning and carry them to the laundry room. When the staff person carried them back to the room, he'd get increasingly agitated. This "back and forth" would continue until he got agitated, yelling, stomping, hitting himself and striking out at the staff person.
The morning staff people wanted a strict restraint policy put into effect to control him and eliminate this behavior before it escalated. (I should add at this point that I was just another low-level staff person)
I had some different thoughts on the matter, and was able to get people to try something different. Not without resistance, though.
I tried to view the resident as someone trying to make sense of his world. We knew he'd spent most of his life in an institution and there's no telling what he learned was "normal" there.
But the basics seemed to be this: He put his dirty clothes in a pile on the floor at night. In the morning, those same clothes were folded on top of his dresser.
Maybe the simplest explanation was he thought they were still dirty?
I asked the morning staff person if they could hold his clothes back. In the morning, they could stick the clothes in the dryer and run it for a bit. Have the guy come to the room, get them out and then put them away.
Her first reaction was "I'm not going to do all that laundry again!" I pointed out I was talking about just heating them up a little in the dryer. Her second reaction was "We're just giving him what he wants!" I pointed out we'd be giving him what he UNDERSTOOD.
When I further pointed out that the time involved in my proposal would involve zero stress and a lot less time than a new behavior plan calling for restraint, people went for it.
It worked - obviously, or I probably wouldn't be telling this particular story.
I was prepared to be wrong. I was trying to make informed guesses about what was motivating this particular person's behavior instead of just trying to force him to conform to what I wanted. If it hadn't worked, there were other hypotheses that could have been explored.
But how you approach a problem can make a very big difference in terms of the solutions you come up with.
Posted by Synesthesia (Member # 4774) on :
That is excellent!
Posted by sndrake (Member # 4941) on :
Thanks, Syn!
I should add that this particular guy was someone who was extremely social and good-natured. It was amazing and alarming to see how fast people could turn view him as someone who "needed to be brought in line" (paraphrasing).
This was a pretty simple situation - not all of them are. But the success started with the question of "what can he be thinking?"
That question was considered irrelevant by Skinner, is currently considered irrelevant by people at JRC, and in too many places alleging to "serve" people with developmental disabilities.
"Support" DOES NOT EQUAL "Control"
Posted by fil (Member # 5079) on :
quote:"Support" DOES NOT EQUAL "Control"
Totally agreed. Though it doesn't take Skinnerian training (can I say "Skinnerian?") to get to this point. Paid support staff with high school degrees so easily fall into the "control" model of providing care. It is a hard thing to overcome. The best way is to make sure that a person with significant disabilities (who may not be able to speak up for herself) has SOMEONE (or more than that) who is outside the paid loop...not me as a County worker, not the paid direct care staff, not the paid psychologist, etc. Someone who is there only for the individual. Not even necessarily a guardian or "advocate," though those often fill that role (But too often, guardians are paid any more...that "paid" thing can taint relationships).
What makes the balancing of this harder in Ohio, any way, is the LAW that says we have to ensure people's health and safety. Seems so obvious...just keep them safe. But this also means keep them safe from themselves, too. And this is where the rub gets more difficult. The state hasn't done a good job of balancing "dignity of risk" and "personal choice" with "health and safety." This has caused more than one overzealous behavior plan. People can lose their licenses and/or jobs if they fail to absolutely protect a person from everything (which ain't easy) yet could lose the same thing if they go too far. Oy.
fil
Posted by fil (Member # 5079) on :
Also, the best change we have had is with portability of support funds. A person or guardian has money tied to the individual receiving services, not to the location the services are given (as it was so very recently). It used to be that if you didn't like a group home you were in, too bad. You can put in for a new one but good luck with the long wait list (and you weren't a priority...people without housing and support were). Now the money is tied to the person and if you don't like a service, see ya! This has been the greatest part of my job...helping people choose providers and helping the person hold these agencies responsible. Very cool...which is why having a good non-paid person in there is so important. As a county worker, I won't see nearly as much nor at the same level of detail as someone close to a person who sees it through their eyes.
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). It clearly occurs during the developmental part of a person's life. Not that has anything real to contribute because I don't think that is Syn's point. Also, it is a disorder not a disease. I don't think they know for sure what causes Autism, only its symptoms. As a disorder, that is all you have to work with so you can only really treat the symptoms, not the cause...'cause we just don't know what that is, yet.![[Big Grin]](biggrin.gif)
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