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.
Saturday, February 3, 2007
The Faux Autism Epidemic
Wow, didn't realize how long it had been since the last post. A lot going on.
People and organizations screaming about the autism epidemic always throw in the "where are all the adults with autism?" remark.
I am happy to tell you where they are. I'm including everyone who is ASD, not "typical" autism, because that's the way it is, and people change, especially ASD people.
Here we go:
Good places to find a high proportion of ASDs are in engineering of all types, universities, law firms, departments of governments and corporations that handle research and/or development and/or analysis, IT departments, technical support, skilled trades such as machinists or custom furniture building, manufacturing jobs that require intense concentration and long processes, and all types of telephone service jobs that don't require interaction with other people except by telephone or computer messaging. That's just what I came up with in about two minutes. I'm sure there are many other fields with a high proportion of ASD employees.
Even at 1 in 166 people being autistic, this equates to only .6% of the population of the U.S. That's 1.8 million people. Compare this to the 10% of the population believed to be gay. There are a few people proclaiming a "gay epidemic," but most of the proclaimers are viewed, except by their followers, as biased and denying reality. If 10% of the population can remain mostly hidden for centuries, except where they are accepted culturally (certain tribals groups, including some American Indian tribes), don't you think .6% of the population could be hidden away, if not by themselves, then by their families?
We now know that many people labeled "mentally retarded" were actually autistic, and were institutionalized on the recommendation of doctors and under pressure from family and society.
We all knew the odd kids in school who didn't fit in, who got into things (depending on when you attended school) like science fiction, rocket building, D&D, computers, staying within their selected societal group, and avoiding contact with the "typical" kids.
.6% in a school of 500 kids is 30, 1000 kids = 60, 2000 kids = 120. Not a lot.
And I'm sure the faulty belief that boys are more likely to be ASD than girls is because girls can hide ASD better. We're more aural, we're pushed to conform, to be compliant, we learn to read the body language and clues of other people to survive.
So we're here, we're ASD, get used to it!
People and organizations screaming about the autism epidemic always throw in the "where are all the adults with autism?" remark.
I am happy to tell you where they are. I'm including everyone who is ASD, not "typical" autism, because that's the way it is, and people change, especially ASD people.
Here we go:
Good places to find a high proportion of ASDs are in engineering of all types, universities, law firms, departments of governments and corporations that handle research and/or development and/or analysis, IT departments, technical support, skilled trades such as machinists or custom furniture building, manufacturing jobs that require intense concentration and long processes, and all types of telephone service jobs that don't require interaction with other people except by telephone or computer messaging. That's just what I came up with in about two minutes. I'm sure there are many other fields with a high proportion of ASD employees.
Even at 1 in 166 people being autistic, this equates to only .6% of the population of the U.S. That's 1.8 million people. Compare this to the 10% of the population believed to be gay. There are a few people proclaiming a "gay epidemic," but most of the proclaimers are viewed, except by their followers, as biased and denying reality. If 10% of the population can remain mostly hidden for centuries, except where they are accepted culturally (certain tribals groups, including some American Indian tribes), don't you think .6% of the population could be hidden away, if not by themselves, then by their families?
We now know that many people labeled "mentally retarded" were actually autistic, and were institutionalized on the recommendation of doctors and under pressure from family and society.
We all knew the odd kids in school who didn't fit in, who got into things (depending on when you attended school) like science fiction, rocket building, D&D, computers, staying within their selected societal group, and avoiding contact with the "typical" kids.
.6% in a school of 500 kids is 30, 1000 kids = 60, 2000 kids = 120. Not a lot.
And I'm sure the faulty belief that boys are more likely to be ASD than girls is because girls can hide ASD better. We're more aural, we're pushed to conform, to be compliant, we learn to read the body language and clues of other people to survive.
So we're here, we're ASD, get used to it!
Monday, January 15, 2007
My Kids Are the Coolest
The weather around here has been abnormally cold, so we've spent a lot of time indoors. I took the boys to the McDonald's Playplace so they could climb and run around a bit without risking hypothermia.
While we were there, both boys played with all the children, and had a great time. My ASD son was extra special. He played with a little girl who couldn't seem to get anyone to play with her. He had a LEGO creature with him and he would take it apart and reassemble it in odd ways then act like the creature. He managed to make her laugh, and even got a couple of the other kids to come over and play with them both.
Sometimes they overwhelm me with the goodness in their hearts.
While we were there, both boys played with all the children, and had a great time. My ASD son was extra special. He played with a little girl who couldn't seem to get anyone to play with her. He had a LEGO creature with him and he would take it apart and reassemble it in odd ways then act like the creature. He managed to make her laugh, and even got a couple of the other kids to come over and play with them both.
Sometimes they overwhelm me with the goodness in their hearts.
Friday, January 12, 2007
A Bad Memory
Today's post at NTs are Weird blog brought back a very painful memory for me. It was certainly not as severe, but it was an extremely painful life lesson, a scar that threatens to rip open at times.
Late in 5th grade, we moved from a suburb of a fairly large city to a small town. A very small, nearly non-existent town. It was beautiful, and I got the one thing I had wanted for years: a horse.
My first day of school I walked into class after registration to find my new teacher disciplining her class by making them copy pages out of the dictionary. I came in well after the incident had occurred, and I'm sure most of the students had no part in it, but I, along with everyone else, was forced to participate in this punishment. I knew then that things were going to be very different.
Previously, due to my good behavior and excellent grades, I had gotten on well with many of my teachers, and had been the pet of my previous 5th grade teacher. Yes, I had a few social difficulties, but I had done nothing too weird, and I was always willing to help.
It was a small school, and there was only one class for each grade. She was the only 5th grade teacher. I believe it was the next year (I am not positive) she became one of the teachers for the junior high / middle school students. We had different teachers for our subjects, and shared the same school with the elementary students. I don't remember which class she was teaching, but she seemed to develop an intense dislike for me that year.
If a student was not doing well, the teachers would send home notices to the parents and have a parent-teacher conference. That year (remember, I had never gotten into trouble for anything and had always carried an A average) I was called to the front of the class and handed one of these notices. She filled it out and announced the contents to everyone in the class. She gave me C minuses straight across (achievement, behavior and effort).
I took it home in shock. Half the class found it hysterically funny as I certainly was not a problem student and the other half seemed to be in shock with me.
Then came the conference. The teacher, in front of my mother, lied about me, belittled me, screamed at me, and my mother did nothing. Nothing. In fact, she turned on me, questioning me, the daughter who had never knowingly lied to her. I sat there sobbing, denying everything, asked the teacher to show my mother my work to show that it was good (the teacher refused, having destroyed it to prevent me from proving the lies), and my mother did not help me. She did not question a thing the teacher said, and she did nothing about the fact that I was being abused in front of her. I went home miserable, and my mother began to think that everything I had ever told her was a lie. Our relationship was never the same.
Now, certainly, this is nothing compared to the horrifying physical, mental and emotional abuse and neglect suffered by millions of children. But it doesn't change the fact that it left a huge scar on my soul, and caused the development of the extreme cynicism and lack of trust that are a large part of my personality.
It's impossible to forget something like that. And while I may have let it go enough for it to be considered forgiven, I lost my faith in my parents forever.
Late in 5th grade, we moved from a suburb of a fairly large city to a small town. A very small, nearly non-existent town. It was beautiful, and I got the one thing I had wanted for years: a horse.
My first day of school I walked into class after registration to find my new teacher disciplining her class by making them copy pages out of the dictionary. I came in well after the incident had occurred, and I'm sure most of the students had no part in it, but I, along with everyone else, was forced to participate in this punishment. I knew then that things were going to be very different.
Previously, due to my good behavior and excellent grades, I had gotten on well with many of my teachers, and had been the pet of my previous 5th grade teacher. Yes, I had a few social difficulties, but I had done nothing too weird, and I was always willing to help.
It was a small school, and there was only one class for each grade. She was the only 5th grade teacher. I believe it was the next year (I am not positive) she became one of the teachers for the junior high / middle school students. We had different teachers for our subjects, and shared the same school with the elementary students. I don't remember which class she was teaching, but she seemed to develop an intense dislike for me that year.
If a student was not doing well, the teachers would send home notices to the parents and have a parent-teacher conference. That year (remember, I had never gotten into trouble for anything and had always carried an A average) I was called to the front of the class and handed one of these notices. She filled it out and announced the contents to everyone in the class. She gave me C minuses straight across (achievement, behavior and effort).
I took it home in shock. Half the class found it hysterically funny as I certainly was not a problem student and the other half seemed to be in shock with me.
Then came the conference. The teacher, in front of my mother, lied about me, belittled me, screamed at me, and my mother did nothing. Nothing. In fact, she turned on me, questioning me, the daughter who had never knowingly lied to her. I sat there sobbing, denying everything, asked the teacher to show my mother my work to show that it was good (the teacher refused, having destroyed it to prevent me from proving the lies), and my mother did not help me. She did not question a thing the teacher said, and she did nothing about the fact that I was being abused in front of her. I went home miserable, and my mother began to think that everything I had ever told her was a lie. Our relationship was never the same.
Now, certainly, this is nothing compared to the horrifying physical, mental and emotional abuse and neglect suffered by millions of children. But it doesn't change the fact that it left a huge scar on my soul, and caused the development of the extreme cynicism and lack of trust that are a large part of my personality.
It's impossible to forget something like that. And while I may have let it go enough for it to be considered forgiven, I lost my faith in my parents forever.
Robert Redford Is Making Me Angry
I know, I know. He doesn't really run the Sundance Festival anymore, but the announcement that I say yesterday that the movie "Autism Every Day" would be screened on January 21 at this year's festival has made me so angry it's ruining all my lovely memories of him in movies.
This is the letter I sent:
To Whom It May Concern:
I was incredibly upset to find out yesterday that Sundance would be screening "Autism Every Day" at this year's film festival.
The film (I can't call it a documentary as the slant of the bias shown is so great) seems to delight in portraying worst case scenarios, and mothers who have self-traumatized themselves with the guilt of bearing an imperfect child to the point that they openly discuss the murder of their autistic children and/or suicide, one of them in front of her child.
Autism Speaks rejects the growing evidence of medical studies that autism is genetic and/or congenital and not "curable." It is a physical condition that can be treated, as of now, with love, time, attention and kindness. It is not a condition that can be treated by chelation or HBOT or injections or any of the other therapies claimed as cures by the many quacks willing to prey on desperate parents.
It seems that many of the parents of autistic children do not want to accept that they might simply carry genetic material that has resulted in the birth of a child with autism, even though many of these parents, if properly tested, would themselves be diagnosed ASD.
This film is conscienceless and cruel, a lie and abuse, and may have even resulted in the murder of autistic children by their parents who had seen this film. The view of parents who murder their disabled children as doing a kindness to the child is despicable and horrifying, and has resulted in many of the parents who have been prosecuted for these murders receiving light sentences, some no more than probation, as if the selfishness and cruelty of their decision were acceptable and courageous.
I understand the frustrations of a parent with an autistic child, especially one that seems uncommunicative and withdrawn, and with other socially unacceptable behaviors, but to support this film does a disservice to the majority of ASD people in our society who make, and have made, good lives for themselves and others, full, complete, often exceptional lives. There have been many geniuses who have shown many symptoms of ASD, and who have contributed profoundly in both scientific and societal fields.
I would suggest that if you want to view some real films by and about autistics you go to YouTube and look up Posautive. Why don't you show some of these films during the festival? We would like to be heard.
[signed by Persephone]
This is the letter I sent:
To Whom It May Concern:
I was incredibly upset to find out yesterday that Sundance would be screening "Autism Every Day" at this year's film festival.
The film (I can't call it a documentary as the slant of the bias shown is so great) seems to delight in portraying worst case scenarios, and mothers who have self-traumatized themselves with the guilt of bearing an imperfect child to the point that they openly discuss the murder of their autistic children and/or suicide, one of them in front of her child.
Autism Speaks rejects the growing evidence of medical studies that autism is genetic and/or congenital and not "curable." It is a physical condition that can be treated, as of now, with love, time, attention and kindness. It is not a condition that can be treated by chelation or HBOT or injections or any of the other therapies claimed as cures by the many quacks willing to prey on desperate parents.
It seems that many of the parents of autistic children do not want to accept that they might simply carry genetic material that has resulted in the birth of a child with autism, even though many of these parents, if properly tested, would themselves be diagnosed ASD.
This film is conscienceless and cruel, a lie and abuse, and may have even resulted in the murder of autistic children by their parents who had seen this film. The view of parents who murder their disabled children as doing a kindness to the child is despicable and horrifying, and has resulted in many of the parents who have been prosecuted for these murders receiving light sentences, some no more than probation, as if the selfishness and cruelty of their decision were acceptable and courageous.
I understand the frustrations of a parent with an autistic child, especially one that seems uncommunicative and withdrawn, and with other socially unacceptable behaviors, but to support this film does a disservice to the majority of ASD people in our society who make, and have made, good lives for themselves and others, full, complete, often exceptional lives. There have been many geniuses who have shown many symptoms of ASD, and who have contributed profoundly in both scientific and societal fields.
I would suggest that if you want to view some real films by and about autistics you go to YouTube and look up Posautive. Why don't you show some of these films during the festival? We would like to be heard.
[signed by Persephone]
Sunday, January 7, 2007
In the Car Tonight
On the way home, my NT son starts acting out a scene from a cartoon we've seen (The Adventures of Billy and Mandy). It's a cartoon about two kids who force Death to be their friend. Billy is extremely stupid. Anyway, my son starts copying Billy, saying, "They'll kill us all. Kill us all. Kill us all," in a drawn-out wail.
My ASD son says casually, "That wasn't my original plan, but, okay." We all started laughing.
My ASD son says casually, "That wasn't my original plan, but, okay." We all started laughing.
Saturday, January 6, 2007
Snark!
I love intelligent snarkiness. I believe in poking the complacent. But I have to be careful. Some people don't get it. Some only get it enough to be offended. Right now, I have to go back to the school and pull my son out of the clutches of the special education instructor.
When I first brought up my son's needs, while he was still in second grade, his teacher immediately arranged a meeting with the principal, the special education instructor, herself and us, his parents. The special education instructor had never heard of Asperger's. As we described his differences, his gifts and his needs, she attempted to force his behaviors into the boxes she knew about. None of these were related to anything ASD.
But we came out of the meeting, after making extremely clear our unhappiness with the SPB lack of knowledge and cooperation, with an agreed list of some simple things his teachers could do for the future to help him out, such as: he performs much better when he has a schedule laying out the time to be spent on each section (once he's in junior high, this won't be as important, as he will be changing classes for each section), letting him turn in homework done on the computer (instead of handwritten), earplugs for music class, giving him a few minutes to himself if he starts to melt down. Small things that can make a huge difference.
Well, the next year everything changed. The SPB apparently took a seminar on Asperger's because she was suddenly very interested in being part of our son's education. We agreed that he could go for some physical therapy once a week to help his small motor coordination. That was all we agreed to; it was the only reason we agreed to an ISP. But the therapy didn't happen that year or the next. If the school couldn't afford it, then they should have told us. They never did. We would have made other arrangements. But the real problem is that, this year, without our knowledge, the SPB began pulling him from class daily for "homework assistance." Bulls**t. She sent an ISP at the beginning of the school year. We didn't agree to it, beyond agreeing to physical therapy, and put this in writing. We didn't find out about the homework assistance for months.
When we did find out, we asked our son if he wanted to see the SPB for the homework assistance. He didn't seem to care either way. We let it go, and again requested, in writing, the physical therapy. Nothing has changed. The semester is ending. We've decided that he will no longer be under an ISP. We can arrange physical therapy through our health insurance.
As to the title, the SPB is completely clueless when it comes to snark. She doesn't get it. And anyone who doesn't get it should not be anywhere near my son, who understands snark, irony, puns, and the power of language (including the all-powerful pause). He could cut her into pieces and she would spend the entire conversation shifting each of his comments into a different box, to be assembled as his disability. Can you tell I hate her? She doesn't listen to anyone, at least not anyone without a doctorate. We're just bugs to be crushed on her way to getting her funding and filing her reports.
So, this must end. It will end.
When I first brought up my son's needs, while he was still in second grade, his teacher immediately arranged a meeting with the principal, the special education instructor, herself and us, his parents. The special education instructor had never heard of Asperger's. As we described his differences, his gifts and his needs, she attempted to force his behaviors into the boxes she knew about. None of these were related to anything ASD.
But we came out of the meeting, after making extremely clear our unhappiness with the SPB lack of knowledge and cooperation, with an agreed list of some simple things his teachers could do for the future to help him out, such as: he performs much better when he has a schedule laying out the time to be spent on each section (once he's in junior high, this won't be as important, as he will be changing classes for each section), letting him turn in homework done on the computer (instead of handwritten), earplugs for music class, giving him a few minutes to himself if he starts to melt down. Small things that can make a huge difference.
Well, the next year everything changed. The SPB apparently took a seminar on Asperger's because she was suddenly very interested in being part of our son's education. We agreed that he could go for some physical therapy once a week to help his small motor coordination. That was all we agreed to; it was the only reason we agreed to an ISP. But the therapy didn't happen that year or the next. If the school couldn't afford it, then they should have told us. They never did. We would have made other arrangements. But the real problem is that, this year, without our knowledge, the SPB began pulling him from class daily for "homework assistance." Bulls**t. She sent an ISP at the beginning of the school year. We didn't agree to it, beyond agreeing to physical therapy, and put this in writing. We didn't find out about the homework assistance for months.
When we did find out, we asked our son if he wanted to see the SPB for the homework assistance. He didn't seem to care either way. We let it go, and again requested, in writing, the physical therapy. Nothing has changed. The semester is ending. We've decided that he will no longer be under an ISP. We can arrange physical therapy through our health insurance.
As to the title, the SPB is completely clueless when it comes to snark. She doesn't get it. And anyone who doesn't get it should not be anywhere near my son, who understands snark, irony, puns, and the power of language (including the all-powerful pause). He could cut her into pieces and she would spend the entire conversation shifting each of his comments into a different box, to be assembled as his disability. Can you tell I hate her? She doesn't listen to anyone, at least not anyone without a doctorate. We're just bugs to be crushed on her way to getting her funding and filing her reports.
So, this must end. It will end.
Friday, January 5, 2007
Stimming
Stimming has been brought up quite a bit. My favorite bit of stimming while on the computer? Scrolling through a large document, letting the text roll past my eyes. I find this very soothing, especially on a busy, stressful day.
I do find myself waggling my fingers a bit when I'm kicking my brain into "computer mode." My son briefly taps his fingers on his head when he's seriously working something out. I think of it as shifting and engaging the clutch as I gear up.
Yes, I'm very mechanical. I love machines. Love learning how they work. Love making them work. I'm really good at doing beta testing on software and hardware as I will put the test item through its paces. I've killed computers. I've killed programs. But I was supposed to.
If anyone has a weird request, they usually ask for me first, because even if I don't know a way to do something, I'll try everything I can to get the requested result.
My son's dearest toys have been his LEGO sets. But this year he kept looking at video cameras. So I got him a compact digital video recorder. He announced last night that if he doesn't get into NASA, he's going to be a movie director. I could handle being the mother of the next Steven Spielberg.
I do find myself waggling my fingers a bit when I'm kicking my brain into "computer mode." My son briefly taps his fingers on his head when he's seriously working something out. I think of it as shifting and engaging the clutch as I gear up.
Yes, I'm very mechanical. I love machines. Love learning how they work. Love making them work. I'm really good at doing beta testing on software and hardware as I will put the test item through its paces. I've killed computers. I've killed programs. But I was supposed to.
If anyone has a weird request, they usually ask for me first, because even if I don't know a way to do something, I'll try everything I can to get the requested result.
My son's dearest toys have been his LEGO sets. But this year he kept looking at video cameras. So I got him a compact digital video recorder. He announced last night that if he doesn't get into NASA, he's going to be a movie director. I could handle being the mother of the next Steven Spielberg.
From comments at Autism Diva part 1
This is part of a huge comment I made at Autism Diva, which resulted in my actually starting to blog on the subject:
Anecdotal: I realized I had a gluten intolerance long before I ever heard of Asperger's. My son and I have not been officially diagnosed, but we meet a good proportion of the criteria for a diagnosis of Asperger's Syndrome. He also has a gluten intolerance. We're also both part Irish. My gluten intolerance did not show up until I was twelve, my son's until he was ten.We don't seem to have any problems with dairy.My family physician and his pediatrician have approached the problem this way: if cutting the item out of the diet ends the unpleasant symptoms, then you're probably allergic or intolerant. Doing a biopsy may make it official, but it's a dangerous procedure just to make a definitive diagnosis when the problem will be treated in the same way after the diagnosis as it was before.
There's an incredibly high rate of gluten intolerance and celiac disease among the Irish. Why? It's probably related to the low levels of wheat in the diet of the Irish. Even when Ireland was basically a wheat factory for England, nearly all the crop was exported by the English landholders. That's why the Irish became so dependent on the potato. It's quite possible that a higher level of wheat in the diet would either have resulted in a better adaptation, or simply killed off the segment of the population that could not digest the gluten.
Is there a higher level of ASD among the Irish? I don't know. They seem to have a higher rate of eccentricity, insanity, genius and misery. Autism? Asperger's? Maybe.
Or maybe it just happens that the gluten intolerance makes us a little bit off mentally.
What I have found is that nearly any type of vegetable protein causes problems for me. This includes MSG, that lovely soy protein derivative. This also means I won't be a vegetarian unless it's forced on me, as gluten and soy are huge parts of many vegetarian diets.
Maybe this way I can avoid being a real autistic (as determined by David Kirby) by not having diarrhea pouring down my legs. Wow. I didn't know it was so simple.
Anecdotal: I realized I had a gluten intolerance long before I ever heard of Asperger's. My son and I have not been officially diagnosed, but we meet a good proportion of the criteria for a diagnosis of Asperger's Syndrome. He also has a gluten intolerance. We're also both part Irish. My gluten intolerance did not show up until I was twelve, my son's until he was ten.We don't seem to have any problems with dairy.My family physician and his pediatrician have approached the problem this way: if cutting the item out of the diet ends the unpleasant symptoms, then you're probably allergic or intolerant. Doing a biopsy may make it official, but it's a dangerous procedure just to make a definitive diagnosis when the problem will be treated in the same way after the diagnosis as it was before.
There's an incredibly high rate of gluten intolerance and celiac disease among the Irish. Why? It's probably related to the low levels of wheat in the diet of the Irish. Even when Ireland was basically a wheat factory for England, nearly all the crop was exported by the English landholders. That's why the Irish became so dependent on the potato. It's quite possible that a higher level of wheat in the diet would either have resulted in a better adaptation, or simply killed off the segment of the population that could not digest the gluten.
Is there a higher level of ASD among the Irish? I don't know. They seem to have a higher rate of eccentricity, insanity, genius and misery. Autism? Asperger's? Maybe.
Or maybe it just happens that the gluten intolerance makes us a little bit off mentally.
What I have found is that nearly any type of vegetable protein causes problems for me. This includes MSG, that lovely soy protein derivative. This also means I won't be a vegetarian unless it's forced on me, as gluten and soy are huge parts of many vegetarian diets.
Maybe this way I can avoid being a real autistic (as determined by David Kirby) by not having diarrhea pouring down my legs. Wow. I didn't know it was so simple.
Thursday, January 4, 2007
Beauty and the Geek
I love this show. I'm totally on the side of the geeks, but a few of the girls always turn out to be able to get past their usual persona and grow a bit, along with the geeks. However, the sooner Cecille is gone the better. Unfortunately, Nate could go all the way. I would hate to see him out because of her. Cecille is the biggest bag of ballast on the show. If Tori had teamed up with Nate, she'd probably still be on the show.
OMG, wasn't Sheree awesome?!
Okay, so what does this have to do with ASD? Duh! Look at these guys! They're all very intelligent and most of them show obvious behaviors associated with autism/Asperger's. But look how well they've done. Maybe not socially, which NTs consider to be the most or second most important area of success. Look at these guys. Every one of them will succeed in their chosen fields, maybe even make some huge new discovery and, sooner or later, they'll probably all get married (for life), have kids and pass on their excellent genes.
The girls? Not so good an outlook. Sheree will succeed. She will succeed because she knows there's more out there than how she looks on Saturday night. The others, well, we'll see how things unfold.
OMG, wasn't Sheree awesome?!
Okay, so what does this have to do with ASD? Duh! Look at these guys! They're all very intelligent and most of them show obvious behaviors associated with autism/Asperger's. But look how well they've done. Maybe not socially, which NTs consider to be the most or second most important area of success. Look at these guys. Every one of them will succeed in their chosen fields, maybe even make some huge new discovery and, sooner or later, they'll probably all get married (for life), have kids and pass on their excellent genes.
The girls? Not so good an outlook. Sheree will succeed. She will succeed because she knows there's more out there than how she looks on Saturday night. The others, well, we'll see how things unfold.
First Post. Woo hoo?
Wow, after commenting at Autism Diva, she kindly handed out my blog address, so now I must actually blog. FYI, I do have a blog at livejournal that I haven't updated in two months. (I've been sick and several other problems have been weighing down on me, including the holidays.) That blog is more of current events, especially spiritual and civil rights commentary.
This one will be about every day life for an Asperger's adult with an Asperger's son and typical son.
As to the URL, that refers to me, oh, most definitely me, especially as my family is originally from the South. While I may not be "right," I'm a hell of a lot better than those who *may* be.
This one will be about every day life for an Asperger's adult with an Asperger's son and typical son.
As to the URL, that refers to me, oh, most definitely me, especially as my family is originally from the South. While I may not be "right," I'm a hell of a lot better than those who *may* be.
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