Oxytocin, as referenced in the Healthday article, rang a bell. It only took a minute to find, but it's the hormone that makes people trust each other.
Great, a drug that will make autistics trust NTs so they can be used and abused more easily. Exactly what we don't need.
Autistics don't interact because it can be painful, mentally and physically, and not because we are incapable of social interaction. We are loaded with empathy; we feel what you feel, deeply, and we suffer with you.
Temple Grandin empathizes with animals. It's usually not as overwhelming as empathizing with a human. Animals seem to sense the differences in autistics. They swarm around me, pushing for physical contact. I've had squirrels, chipmunks and wild rabbits come to my hand.
One in 150? I think it should be higher if the human species is going to survive.
Monday, May 28, 2007
Sunday, May 27, 2007
My Comments to YAI-NIPD
I just read an article on Yahoo! News from Healthday Reporter regarding your recent conference on autism. Some of the comments by doctors I found self-serving (Dr. Kaufman's remarks seem to push parents to invest in the services provided by his firm, without presenting proof that the child's improvement might simply occur with maturation), scary (Dr. Kaufman's remarks about medications, when so many autistics have unusual adverse reactions to medications, and Dr. Hollander's reporting on the use of oxytocin), but the most frightening part of the report was the referral to Autism Speaks at the end of the article.
Autism Speaks is an organization that does not allow autistics any roles in administration, governance or consultation. They choose to marginalize the people they say they are trying to help. They reject autistics who do speak for themselves as not truly autistic. Their decision to fund and distribute a movie that has parents speaking in front of their autistic children (as if the children did not understand) of desires to kill the children, and of the unbearing life they suffer as the result of having autistic children.
Perhaps this is not your choice. If it is not, please, notify Healthday Reporter to clear this misconception.
Thank you.
Autism Speaks is an organization that does not allow autistics any roles in administration, governance or consultation. They choose to marginalize the people they say they are trying to help. They reject autistics who do speak for themselves as not truly autistic. Their decision to fund and distribute a movie that has parents speaking in front of their autistic children (as if the children did not understand) of desires to kill the children, and of the unbearing life they suffer as the result of having autistic children.
Perhaps this is not your choice. If it is not, please, notify Healthday Reporter to clear this misconception.
Thank you.
The Dangerous Often Mix with the Safe
I pulled this from Yahoo! News:
http://news.yahoo.com/s/hsn/20070527/hl_hsn/autismsrisemayreflectbroaderdefinitionbetterdiagnosis
Autism's Rise May Reflect Broader Definition, Better Diagnosis
By Ed Edelson
HealthDay Reporter
SUNDAY, May 27 (HealthDay News) -- How widespread is autism? And is the condition, which centers on characteristics such as the inability to form personal relationships, being properly diagnosed?
New York City-based YAI-National Institute for People With Disabilities (YAI-NIPD) (It appears to be operative only in New York and Puerto Rico. I don't know why.) is a not-for-profit organization that not only assists families who have members with a variety of developmental disabilities, but also holds a series of conferences that highlight the latest research into specific conditions.
Earlier in May, YAI-NIPD held an autism conference that addressed the apparent increase in autism cases. One reason may be a broader definition of autism, said Dr. David Kaufman, medical director of Premier Healthcare, a Manhattan organization specializing in disability services.
"The estimate was one child in 166, made by the epidemiology unit of the [U.S. governments] National Institutes of Health," Kaufman said. "Now it is down to one in 150. I think that since the definition has been broadened, a lot of children are getting diagnosed who are at the milder end of the spectrum."
The cause of autism remains unclear, Kaufman said. "I believe that there is something in these children that predisposes them to autism and maybe something that triggers it, perhaps a viral illness, like children who get diabetes at an early age."
Whatever the cause, "the best treatment so far is diagnosing it early on and intervening early on, sometimes with medications," Kaufman said. "There is a broad array of early intervention services."
(Now we have a problem. Auties often have unusual reactions to medications; I've suffered quite a few myself: diarrhea and heartburn are common, but I also developed chronic depression from ibuprofen. He doesn't make clear what types of medications. This will require some research.)
When a child's mysteriously detached behavior arouses parents suspicions, "the first line of defense is with the pediatrician," he said. "The child can be referred to a developmental pediatrician or pediatric neurologist or specialist who will do an evaluation and then send the child to a speech therapist, a language therapist or another therapist for treatment. The earlier you intervene, the better children do."
(He's obviously selling his company's services. He's a bastard for preying on parents who are surprised and scared by an autism diagnosis and the horrors that Autism Speaks is selling.)
Financial help is often available from state governments, but "each state has different funding lines," Kaufman noted.
Children's basic medical needs should not be overlooked, Kaufman said. "Their medical needs are the same as anyone else, but it is harder to get at them," he said. "Once they get to age 2 or 4, they are able to tell the doctor what is wrong with them, but they are not as cooperative as another child might be."
(Oh, please. Maybe we're not as cooperative because we're not stupid enough to believe that the shot we get this time won't hurt as much as the shot we got last time, or that the candy we get afterward will make it all better.)
Although there is a long way to go, "One thing that is being done right is an increased awareness of autism," said Dr. Eric Hollander, professor and chairman of psychiatry at Mount Sinai School of Medicine in New York. "It has become a priority funding issue for the National Institutes of Health. There are findings that directly impact on treatment and also can lead to a better understanding of the underlying causes."
One area that clearly has been neglected is autism in adults, Hollander said. "The high school or college population, the need for residential care is also there. Child psychiatrists and pediatricians will not necessarily be treating these individuals when they get older.
"And those who work with the older population don't have enough training. We need to know a lot more about intervention with medication, how it alters outcome, the repetitive behavior, the rigid behavior, and also new treatments for disruptive behavior."
What causes autism? Attention is being focused on oxytocin, a hormone produced by the pituitary gland, Hollander said. It appears to play a role in social behavior and repetitive behavior. "Now we are starting to have a certain impact on symptoms by administering oxytocin in various forms, such as intravenously."
(Crap. Drugs. Research time, again.)
Attention also is being paid to environmental and genetic factors, Hollander said, "things in the environment that influence what genes are turned on and turned off. We need to know a lot more about environmental factors and how they play a role in some people with autism."
One indicator of how much remains to be learned is the widely differing rates of diagnosis of autism from state to state, Hollander said, but that is just part of the picture. "We don't have predictors of which individuals will respond to which kinds of treatment," he said, but ended on a hopeful note: "With additional funding, there will be more rapid breakthroughs."
Dr. Steven Lowe, the medical director of YAI-NIPD, added that autism treatment still is often a struggle. "It's a challenge, because so little work has been done in the management of patients with autism and also in mental retardation and developmental disabilities," he said. "There has been very limited work on management of such patients in the primary care area and very limited research. There is limited interest for primary health-care practitioners, because it is such a daunting prospect."
But there is impetus for progress from "parents and other caregivers and the media," Lowe said. "Among them, the issue of autism is better recognized, and it is less of a stigma. People with autism are becoming more visible. Caregivers are advocating for better access to the same sort of health care that disabled people are getting.
"There is a tremendous lack of formalized training in medicine appropriate to this patient population," Lowe added. "But there are providers out there -- institutions like our own take care of patients with mental disabilities, mainly through on-the-job training."
For families facing a problem, "my recommendation is to find a place that specializes in this patient population," Lowe said. "Look for a multidisciplinary system where everyone is comfortable with mental retardation or developmental disabilities such as autism. You need a large group of clinicians in various fields, the kind of team approach that has proven to be very effective."
Then there is the influence of other elements, such as diet. Dr. Joseph Levy, a pediatric gastroenterologist who is professor of pediatrics at the New York University School of Medicine, offers a theory that developmental disability is often literally a gut issue.
"There are a whole host of anecdotal reports about how particular diets have enabled children to make progress," Levy said. "Sooner or later, every parent will focus on the dimension of nutrition of child care and will experiment with it. For example, if there is aggressive or self-injurious behavior, the explanation is that the child has reflux irritation or difficulty with bowel movements."
The problem is that parental concentration on dietary factors means that they "sometimes are committed to thinking that autism is the manifestation of a leaky gut," Levy said. "But we don't know whether it is proven that autism is really a disease that affects the immune system in the gut, with toxins that are absorbed from the intestines."
It is necessary to work with nutritionists to be sure that children with autism get the proper micronutrients, but "autism is not one diagnosis, and this can put parents to great restrictions and might even be harmful," Levy said. "We do have to move forward the science that enables us to understand what is going on in the gut of the child, but we must do that without a preset ideology."
(I was a little worried by Dr. Levy's first statement, but his further remarks made me feel better. Gut problems seem more common among autistics, but they aren't necessarily tied together. They could as easily result from a certain genetic background, a genetic background that may result in a higher incidence of autism. Frankly, if your child is having diarrhea, stomach pain, vomiting, don't blame it on the autism, it can be treated separately, just as you would an NT with the same problem.)
More information
There's more on autism at Autism Speaks. (This part is really scary.)
http://news.yahoo.com/s/hsn/20070527/hl_hsn/autismsrisemayreflectbroaderdefinitionbetterdiagnosis
Autism's Rise May Reflect Broader Definition, Better Diagnosis
By Ed Edelson
HealthDay Reporter
SUNDAY, May 27 (HealthDay News) -- How widespread is autism? And is the condition, which centers on characteristics such as the inability to form personal relationships, being properly diagnosed?
New York City-based YAI-National Institute for People With Disabilities (YAI-NIPD) (It appears to be operative only in New York and Puerto Rico. I don't know why.) is a not-for-profit organization that not only assists families who have members with a variety of developmental disabilities, but also holds a series of conferences that highlight the latest research into specific conditions.
Earlier in May, YAI-NIPD held an autism conference that addressed the apparent increase in autism cases. One reason may be a broader definition of autism, said Dr. David Kaufman, medical director of Premier Healthcare, a Manhattan organization specializing in disability services.
"The estimate was one child in 166, made by the epidemiology unit of the [U.S. governments] National Institutes of Health," Kaufman said. "Now it is down to one in 150. I think that since the definition has been broadened, a lot of children are getting diagnosed who are at the milder end of the spectrum."
The cause of autism remains unclear, Kaufman said. "I believe that there is something in these children that predisposes them to autism and maybe something that triggers it, perhaps a viral illness, like children who get diabetes at an early age."
Whatever the cause, "the best treatment so far is diagnosing it early on and intervening early on, sometimes with medications," Kaufman said. "There is a broad array of early intervention services."
(Now we have a problem. Auties often have unusual reactions to medications; I've suffered quite a few myself: diarrhea and heartburn are common, but I also developed chronic depression from ibuprofen. He doesn't make clear what types of medications. This will require some research.)
When a child's mysteriously detached behavior arouses parents suspicions, "the first line of defense is with the pediatrician," he said. "The child can be referred to a developmental pediatrician or pediatric neurologist or specialist who will do an evaluation and then send the child to a speech therapist, a language therapist or another therapist for treatment. The earlier you intervene, the better children do."
(He's obviously selling his company's services. He's a bastard for preying on parents who are surprised and scared by an autism diagnosis and the horrors that Autism Speaks is selling.)
Financial help is often available from state governments, but "each state has different funding lines," Kaufman noted.
Children's basic medical needs should not be overlooked, Kaufman said. "Their medical needs are the same as anyone else, but it is harder to get at them," he said. "Once they get to age 2 or 4, they are able to tell the doctor what is wrong with them, but they are not as cooperative as another child might be."
(Oh, please. Maybe we're not as cooperative because we're not stupid enough to believe that the shot we get this time won't hurt as much as the shot we got last time, or that the candy we get afterward will make it all better.)
Although there is a long way to go, "One thing that is being done right is an increased awareness of autism," said Dr. Eric Hollander, professor and chairman of psychiatry at Mount Sinai School of Medicine in New York. "It has become a priority funding issue for the National Institutes of Health. There are findings that directly impact on treatment and also can lead to a better understanding of the underlying causes."
One area that clearly has been neglected is autism in adults, Hollander said. "The high school or college population, the need for residential care is also there. Child psychiatrists and pediatricians will not necessarily be treating these individuals when they get older.
"And those who work with the older population don't have enough training. We need to know a lot more about intervention with medication, how it alters outcome, the repetitive behavior, the rigid behavior, and also new treatments for disruptive behavior."
What causes autism? Attention is being focused on oxytocin, a hormone produced by the pituitary gland, Hollander said. It appears to play a role in social behavior and repetitive behavior. "Now we are starting to have a certain impact on symptoms by administering oxytocin in various forms, such as intravenously."
(Crap. Drugs. Research time, again.)
Attention also is being paid to environmental and genetic factors, Hollander said, "things in the environment that influence what genes are turned on and turned off. We need to know a lot more about environmental factors and how they play a role in some people with autism."
One indicator of how much remains to be learned is the widely differing rates of diagnosis of autism from state to state, Hollander said, but that is just part of the picture. "We don't have predictors of which individuals will respond to which kinds of treatment," he said, but ended on a hopeful note: "With additional funding, there will be more rapid breakthroughs."
Dr. Steven Lowe, the medical director of YAI-NIPD, added that autism treatment still is often a struggle. "It's a challenge, because so little work has been done in the management of patients with autism and also in mental retardation and developmental disabilities," he said. "There has been very limited work on management of such patients in the primary care area and very limited research. There is limited interest for primary health-care practitioners, because it is such a daunting prospect."
But there is impetus for progress from "parents and other caregivers and the media," Lowe said. "Among them, the issue of autism is better recognized, and it is less of a stigma. People with autism are becoming more visible. Caregivers are advocating for better access to the same sort of health care that disabled people are getting.
"There is a tremendous lack of formalized training in medicine appropriate to this patient population," Lowe added. "But there are providers out there -- institutions like our own take care of patients with mental disabilities, mainly through on-the-job training."
For families facing a problem, "my recommendation is to find a place that specializes in this patient population," Lowe said. "Look for a multidisciplinary system where everyone is comfortable with mental retardation or developmental disabilities such as autism. You need a large group of clinicians in various fields, the kind of team approach that has proven to be very effective."
Then there is the influence of other elements, such as diet. Dr. Joseph Levy, a pediatric gastroenterologist who is professor of pediatrics at the New York University School of Medicine, offers a theory that developmental disability is often literally a gut issue.
"There are a whole host of anecdotal reports about how particular diets have enabled children to make progress," Levy said. "Sooner or later, every parent will focus on the dimension of nutrition of child care and will experiment with it. For example, if there is aggressive or self-injurious behavior, the explanation is that the child has reflux irritation or difficulty with bowel movements."
The problem is that parental concentration on dietary factors means that they "sometimes are committed to thinking that autism is the manifestation of a leaky gut," Levy said. "But we don't know whether it is proven that autism is really a disease that affects the immune system in the gut, with toxins that are absorbed from the intestines."
It is necessary to work with nutritionists to be sure that children with autism get the proper micronutrients, but "autism is not one diagnosis, and this can put parents to great restrictions and might even be harmful," Levy said. "We do have to move forward the science that enables us to understand what is going on in the gut of the child, but we must do that without a preset ideology."
(I was a little worried by Dr. Levy's first statement, but his further remarks made me feel better. Gut problems seem more common among autistics, but they aren't necessarily tied together. They could as easily result from a certain genetic background, a genetic background that may result in a higher incidence of autism. Frankly, if your child is having diarrhea, stomach pain, vomiting, don't blame it on the autism, it can be treated separately, just as you would an NT with the same problem.)
More information
There's more on autism at Autism Speaks. (This part is really scary.)
Sunday, May 13, 2007
Book I'm Reading
I've started reading The Speed of Dark by Elizabeth Moon.
It's science fiction, taking place approximately 30 years from now. It's an update of Flowers for Algernon, but with an autistic protaganist who is offered a procedure to make him "normal." Will he undergo the procedure?
It's a wonderful description of an ASD life, by a non-ASD writer (as far as we know). The Description near the beginning of Lou, the main character, on his way to work and at work struck so closely to my own feelings and sensations.
I'd like to hear from any other ASDs who have read the book.
It's science fiction, taking place approximately 30 years from now. It's an update of Flowers for Algernon, but with an autistic protaganist who is offered a procedure to make him "normal." Will he undergo the procedure?
It's a wonderful description of an ASD life, by a non-ASD writer (as far as we know). The Description near the beginning of Lou, the main character, on his way to work and at work struck so closely to my own feelings and sensations.
I'd like to hear from any other ASDs who have read the book.
Causes of Autism
A lot of people crusade on the idea that autism is an epidemic caused by pollution of some type, whether from the air, ground, water, vaccines, medicines, etc. It's a thought many parents seem to cling to. Why? Because they think of their beautiful children as defective.
Guess what? They're not defective. You are. You're the one that gave them the genes that made them more sensitive to the pollution you created.
I wish I could find the reference, but a man (who, with his son, is ASD) said that ASDs are society's "canaries in the coalmine." He was speaking of the health issues ASDs suffer from at a higher level than NTs. And it's true. And the studies that have shown higher diagnosed occurences of ASD in areas with greater pollution levels, give me a small basis for a personal theory.
ASD is genetic. It's there, lurking in the chromosomes of many people. A lot of people have grown up and led decently successful lives with no diagnosis (of course, part of this is because there would not have been an overwhelming reason to test them, but also because they wouldn't have met the earlier criteria anyway) of ASD.
There is no epidemic, but there is better diagnosis. There is no epidemic, but there are more noticeable symptoms. What's my personal theory? The number of ASDs has not grown, but pollution and other outside factors are causing an increase in obvious symptoms, making an appearance of an increase in ASD individuals.
All those people throughout history who were reclusives (including the religious who lived in silent meditation), hermits, non-social geniuses, and such were the more obvious ASDs. The social introverts, non-partiers, putterers, quiet individuals were the non-obvious ASDs. Now, the non-obvious are becoming more obvious, partially due to paranoid parents who worry over everything, but also because some are displaying more obvious behaviors due to outside pollutants.
Additionally, the modern world, especially our computer-supported society and the Internet, have allowed people who would previously have been social outcasts, to build lives and relationships. These people are now more likely to get married and have children, children who are more likely to be ASD themselves.
Maybe we're the future. We probably should be.
Guess what? They're not defective. You are. You're the one that gave them the genes that made them more sensitive to the pollution you created.
I wish I could find the reference, but a man (who, with his son, is ASD) said that ASDs are society's "canaries in the coalmine." He was speaking of the health issues ASDs suffer from at a higher level than NTs. And it's true. And the studies that have shown higher diagnosed occurences of ASD in areas with greater pollution levels, give me a small basis for a personal theory.
ASD is genetic. It's there, lurking in the chromosomes of many people. A lot of people have grown up and led decently successful lives with no diagnosis (of course, part of this is because there would not have been an overwhelming reason to test them, but also because they wouldn't have met the earlier criteria anyway) of ASD.
There is no epidemic, but there is better diagnosis. There is no epidemic, but there are more noticeable symptoms. What's my personal theory? The number of ASDs has not grown, but pollution and other outside factors are causing an increase in obvious symptoms, making an appearance of an increase in ASD individuals.
All those people throughout history who were reclusives (including the religious who lived in silent meditation), hermits, non-social geniuses, and such were the more obvious ASDs. The social introverts, non-partiers, putterers, quiet individuals were the non-obvious ASDs. Now, the non-obvious are becoming more obvious, partially due to paranoid parents who worry over everything, but also because some are displaying more obvious behaviors due to outside pollutants.
Additionally, the modern world, especially our computer-supported society and the Internet, have allowed people who would previously have been social outcasts, to build lives and relationships. These people are now more likely to get married and have children, children who are more likely to be ASD themselves.
Maybe we're the future. We probably should be.
From News of the Weird
Barney Vincelette and his wife outside their home.
This little snippet is courtesy of News of the Weird:
Lead Story
* Barney Vincelette, who says his autism renders loud noises
sickening to him, has been feuding for several years with neighbors
in Houston, Del., over their rock music. At first, he invented his
own sound-jammer, according to an April profile in the
Wilmington News Journal, but a judge curtailed its use.
Subsequently, he recorded super-annoying sounds of his own
(including a fog horn's) and had them written out as music
("Sonata for Calliope of Truck Horns About to Be Transcribed for
Locomotive Horns Opus No. 1"), at which point the judge decided
that permitting the neighbors' Bon Jovi but not Vincelette's Sonata
amounted to selective law enforcement, and the feuders settled
their differences. (Vincelette, by the way, lives in a house shaped
like a flying saucer.) [News Journal, 4-15-07]
Here's a link that gives a lot more background:
http://www.delawareonline.com/apps/pbcs.dll/article?AID=/20070415/NEWS/704150338
Obviously, Barney has some problems. And obnoxious neighbors. My previous post refers to these types of people. Why do they need to force their musical choices on others. Are their egos and penises that small?
I look at my beautiful son, the one who wouldn't laugh at the girl that all the other kids at school made fun of, and then was kind to her. You, you extreme waste of oxygen, are going to tell me he shouldn't exist? If we didn't exist, neither would you. You would have destroyed human society by now, but we keep saving you. Maybe we're too kind. Maybe we should get together and buy an island where only ASDs are allowed to live and let you destroy yourselves. We'll save the best of civilization. The rest can rot.
I'm old and fed-up. I really don't care that much about people in general any more. You may have seen the stickers that read, "Mean People Suck." Personally, I want one that says, "Most People Suck."
Once Again, I was lost in space
Actually, it was delayed mourning for my grandmother. And a mystery illness we're still working on.
In the meantime, with April being Autism Awareness Month, there was lots of activity everywhere. The scaries came out of the woodwork, proclaiming their latest cures and preventions (almost all of them snake oil) for the "epidemic."
But, with the Internet and the verbalization of the non-oral auties, the real voices are starting to be heard. And we're not scary or drains on society or people who should never have been born. We're the people propelling the tech future. We're the people who say, "Why not?" We don't spend all our energy (a good chunk, but not all) trying to be part of the in crowd. We're happy with ourselves and those who want to be with us. We aren't Donald Trump or Paris Hilton or George W. Bush and the Bushettes.
We're the people who make your cars run again when no one else can figure it out, who keep the computers functioning, who create the next generation of computer, who create more and better appliances that use less energy and create less pollution, who make those incredible architectural designs reality, who design new medical equipment and new medical procedures that save lives, who are taking people back into space, and who are treated like crap by the very people we're trying to help.
Bitter, bitter, bitter. I'd love to tell all the NT losers (note, this does not refer to all NTs, I'm not NT-averse) who think that anyone not like them should not exist, to please move somewhere else. We don't want you, decent NTs don't want you, all those people with "disabilities" who live well and kindly don't want you. You don't contribute. You don't contribute to the good. You do contribute to pollution and crime and the death of our species. No one wants you. We don't need you. Too bad you're on this planet. Maybe that's why so many ASDs like the idea of traveling to space. You're not there.
In the meantime, with April being Autism Awareness Month, there was lots of activity everywhere. The scaries came out of the woodwork, proclaiming their latest cures and preventions (almost all of them snake oil) for the "epidemic."
But, with the Internet and the verbalization of the non-oral auties, the real voices are starting to be heard. And we're not scary or drains on society or people who should never have been born. We're the people propelling the tech future. We're the people who say, "Why not?" We don't spend all our energy (a good chunk, but not all) trying to be part of the in crowd. We're happy with ourselves and those who want to be with us. We aren't Donald Trump or Paris Hilton or George W. Bush and the Bushettes.
We're the people who make your cars run again when no one else can figure it out, who keep the computers functioning, who create the next generation of computer, who create more and better appliances that use less energy and create less pollution, who make those incredible architectural designs reality, who design new medical equipment and new medical procedures that save lives, who are taking people back into space, and who are treated like crap by the very people we're trying to help.
Bitter, bitter, bitter. I'd love to tell all the NT losers (note, this does not refer to all NTs, I'm not NT-averse) who think that anyone not like them should not exist, to please move somewhere else. We don't want you, decent NTs don't want you, all those people with "disabilities" who live well and kindly don't want you. You don't contribute. You don't contribute to the good. You do contribute to pollution and crime and the death of our species. No one wants you. We don't need you. Too bad you're on this planet. Maybe that's why so many ASDs like the idea of traveling to space. You're not there.
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