19:48
Unknown
Come across this posting in FB, and I wish that Malaysian Public will always come to the rescue of the family if someone has been an asshole: -
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Showing posts with label Family. Show all posts
Showing posts with label Family. Show all posts
Tuesday, 14 August 2012
Sunday, 12 December 2010
My feeling after watching Ocean Heaven (æµ·æ´‹å¤©å ‚)
Kind of Sad, Scare, Helpless and Hopeless. Any good backup plan before I die? I cannot live forever ...
http://en.wikipedia.org/wiki/Ocean_Heaven
Miracle please..
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http://en.wikipedia.org/wiki/Ocean_Heaven
Miracle please..
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Sunday, 3 October 2010
Amazing Umar
Twelve year old Umar, a Malaysian autistic child, amazes at the Kidzcare concert at Dewan Filharmonik Petronas with the song " I dreamed a dream"
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Sunday, 7 March 2010
Parents Often Miss Subtle Autism Signs
Parents Often Miss Subtle Autism Signs
The symptoms of autism tend to emerge in children after six months of age, with a loss of social and communications skills that is more common and more subtle than previously thought, according to a new study that questions previous assumptions about the progression of the condition.
At six months, children with autism spectrum disorder demonstrated behavior similar to other children, gazing at faces, sharing smiles, and vocalizing with similar frequency, researchers reported online in the Journal of the American Academy of Child and Adolescent Psychiatry.
However, autistic children displayed fewer of these behaviors as as they got older, and from six months to 18 months the loss of social communication and skills typically became clear.
To read more click here...
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Friday, 26 February 2010
Sunday, 5 July 2009
Stroke and The Tongue
Stroke Identification
During a BBQ, a friend stumbled and took a little fall - she assured everyone that she was fine (they offered to call paramedics). She said she had just tripped over a brick because of her new shoes.
They got her cleaned up and got her a new plate of food. While she appeared a bit shaken up, Ingrid went about enjoying herself the rest of the evening
Ingrid's husband called later telling everyone that his wife had been taken to the hospital - (at 6:00 pm Ingrid passed away.) She had suffered a stroke at the BBQ. Had they known how to identify the signs of a stroke, perhaps Ingrid would be with us today. Some don't die. They end up in a helpless, hopeless condition instead.
It only takes a minute to read this: -
A neurologist says that if he can get to a stroke victim within 3 hours he can totally reverse the effects of a stroke ... totally. He said the trick was getting a stroke recognized, diagnosed, and then getting the patient medically cared for within 3 hours, which is tough.
Recognizing A Stroke
Thank God for the sense to remember the '3' steps, STR. Read and Learn!
Sometimes symptoms of a stroke are difficult to identify. Unfortunately, the lack of awareness spells disaster. The stroke victim may suffer severe brain damage when people nearby fail to recognize the symptoms of a stroke.
Now doctors say a bystander can recognize a stroke by asking three simple questions:
S *Ask the individual to SMILE.
T *Ask the person to TALK and SPEAK A SIMPLE SENTENCE (Coherently) (i.e. It is sunny out today.)
R *Ask him or her to RAISE BOTH ARMS.
If he or she has trouble with ANY ONE of these tasks, call emergency number immediately and describe the symptoms to the dispatcher.
New Sign of a Stroke: Stick out Your Tongue
NOTE: Another 'sign' of a stroke is this: Ask the person to 'stick' out his tongue. If the tongue is 'crooked', if it goes to one side or the other, that is also an indication of a stroke.
A cardiologist says if everyone who gets this e-mail sends it to 10 people; you can bet that at least one life will be saved.
During a BBQ, a friend stumbled and took a little fall - she assured everyone that she was fine (they offered to call paramedics). She said she had just tripped over a brick because of her new shoes.
They got her cleaned up and got her a new plate of food. While she appeared a bit shaken up, Ingrid went about enjoying herself the rest of the evening
Ingrid's husband called later telling everyone that his wife had been taken to the hospital - (at 6:00 pm Ingrid passed away.) She had suffered a stroke at the BBQ. Had they known how to identify the signs of a stroke, perhaps Ingrid would be with us today. Some don't die. They end up in a helpless, hopeless condition instead.
It only takes a minute to read this: -
A neurologist says that if he can get to a stroke victim within 3 hours he can totally reverse the effects of a stroke ... totally. He said the trick was getting a stroke recognized, diagnosed, and then getting the patient medically cared for within 3 hours, which is tough.
Recognizing A Stroke
Thank God for the sense to remember the '3' steps, STR. Read and Learn!
Sometimes symptoms of a stroke are difficult to identify. Unfortunately, the lack of awareness spells disaster. The stroke victim may suffer severe brain damage when people nearby fail to recognize the symptoms of a stroke.
Now doctors say a bystander can recognize a stroke by asking three simple questions:
S *Ask the individual to SMILE.
T *Ask the person to TALK and SPEAK A SIMPLE SENTENCE (Coherently) (i.e. It is sunny out today.)
R *Ask him or her to RAISE BOTH ARMS.
If he or she has trouble with ANY ONE of these tasks, call emergency number immediately and describe the symptoms to the dispatcher.
New Sign of a Stroke: Stick out Your Tongue
NOTE: Another 'sign' of a stroke is this: Ask the person to 'stick' out his tongue. If the tongue is 'crooked', if it goes to one side or the other, that is also an indication of a stroke.A cardiologist says if everyone who gets this e-mail sends it to 10 people; you can bet that at least one life will be saved.
Friday, 26 June 2009
Self Help Hypnosis
Self hypnosis is a very powerful way to manage a wide range of issues of problems that we have. Next Click on the pictures below that best describe your concern, and self hypnosis your issues and problems away.
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Tuesday, 23 June 2009
Australian couple starved daughter, 7, to death
SYDNEY (AFP) — An Australian couple have been convicted of starving their autistic seven-year-old daughter to death after a harrowing trial which heard the girl weighed just nine kilograms (20 pounds) when she died.
Prosecutors said the emaciated girl had resembled a Holocaust victim, while ambulance workers called to the scene said she looked “mummified” shortly after her November 2007 death in the Hunter Valley, north of Sydney.
A jury deliberated for almost a week before finding the girl’s mother, 35, guilty of murder and convicting her 47-year-old father of manslaughter, national news agency AAP reported.
The pair, who cannot be named for legal reasons, had pleaded not guilty to murder.
Several medical experts testified the girl suffered the most severe case of malnutrition they had seen, saying her head looked like a skull wrapped in skin and that her muscles were wasted due to long-term neglect.
The mother’s barrister Dennis Stewart described his client as a prescription drug addict unable to cope with day-to-day matters who had believed she could nurse her daughter back to health.
He said he her actions were “foolish, irresponsible, negligent to the point of attracting criminal results” but did not warrant a murder conviction — an argument the jury rejected.
The father’s defence was that his wife was the only person who could feed and care for their daughter because of her autism, and the mother had never indicated there was a problem with the girl.
The mother will be sentenced Wednesday and the father in six weeks. Justice Robert Allan Hulme offered the jurors counselling, AAP said.
Please share this news with friends, family and also with your contact list on Twitter, Facebook and MySpace.
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Prosecutors said the emaciated girl had resembled a Holocaust victim, while ambulance workers called to the scene said she looked “mummified” shortly after her November 2007 death in the Hunter Valley, north of Sydney.
A jury deliberated for almost a week before finding the girl’s mother, 35, guilty of murder and convicting her 47-year-old father of manslaughter, national news agency AAP reported.
The pair, who cannot be named for legal reasons, had pleaded not guilty to murder.
Several medical experts testified the girl suffered the most severe case of malnutrition they had seen, saying her head looked like a skull wrapped in skin and that her muscles were wasted due to long-term neglect.
The mother’s barrister Dennis Stewart described his client as a prescription drug addict unable to cope with day-to-day matters who had believed she could nurse her daughter back to health.
He said he her actions were “foolish, irresponsible, negligent to the point of attracting criminal results” but did not warrant a murder conviction — an argument the jury rejected.
The father’s defence was that his wife was the only person who could feed and care for their daughter because of her autism, and the mother had never indicated there was a problem with the girl.
The mother will be sentenced Wednesday and the father in six weeks. Justice Robert Allan Hulme offered the jurors counselling, AAP said.
Please share this news with friends, family and also with your contact list on Twitter, Facebook and MySpace.
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Friday, 19 June 2009
Autism Center must be saved
Quinn: Autism center must be saved By Adam Testa, The Southern
Thursday, June 18, 2009 10:55 PM CDT
CARBONDALE - Gov. Pat Quinn made his message clear within two minutes of walking into Southern Illinois University Carbondale's Wham Education Building, home of the Center for Autism Spectrum Disorders.
"We've got to save the program here," he said, shaking hands with center Director Tony Cuvo before a news conference. "We've got work to do."
The autism center was one of many stops Quinn has made recently on a statewide tour of social service entities, a tour many of his opponents have called fear-mongering.
Quinn, who is promoting citizen engagement in encouraging legislators to approve a state budget including a two-year, 50-percent income tax hike, decried those allegations, calling the tour "truth telling."
A state budget remains in gridlock in Springfield with a new fiscal year slated to begin July 1. A "doomsday" budget projects cuts of up to 50 percent to many of the state's social services, which Quinn said should not even be an option on the table.
"We have to have programs that help families stick together, stay together and move ahead," he said to a crowd of more than 100.
Cuvo addressed the crowd about the importance of the autism center and the role it plays in Southern Illinois. Through state funding, the center has assessed more than 460 children from the region, provided therapy to more than 120 of them, helped many autistic children transition into regular classrooms and affected the lives of families from about 115 communities across more than 30 counties, he said.
"They will have to go out of the region, including out of the state, to get diagnosed," Cuvo said of the effect the closure of the center, which would happen under the state's worst-case scenario budget. "It will be a very sad day for children with autism and their families throughout Illinois."
Quinn said he would not approve a budget that does not include an income tax increase and that cuts funding for essential social services. He also bashed a rumored possibility of operating the state budget on a month-by-month basis for six months, referring to it as the "juvenile way to go" and comparing it to the actions of his predecessor, ousted Gov. Rod Blagojevich.
"We are going to fight until our last day, until our last breath to save this program," Quinn said. "I don't want to cut the heart and soul of Illinois."
adam.testa@thesouthern.com, 618-351-5031
Thursday, June 18, 2009 10:55 PM CDT
CARBONDALE - Gov. Pat Quinn made his message clear within two minutes of walking into Southern Illinois University Carbondale's Wham Education Building, home of the Center for Autism Spectrum Disorders.
"We've got to save the program here," he said, shaking hands with center Director Tony Cuvo before a news conference. "We've got work to do."
The autism center was one of many stops Quinn has made recently on a statewide tour of social service entities, a tour many of his opponents have called fear-mongering.
Quinn, who is promoting citizen engagement in encouraging legislators to approve a state budget including a two-year, 50-percent income tax hike, decried those allegations, calling the tour "truth telling."A state budget remains in gridlock in Springfield with a new fiscal year slated to begin July 1. A "doomsday" budget projects cuts of up to 50 percent to many of the state's social services, which Quinn said should not even be an option on the table.
"We have to have programs that help families stick together, stay together and move ahead," he said to a crowd of more than 100.
Cuvo addressed the crowd about the importance of the autism center and the role it plays in Southern Illinois. Through state funding, the center has assessed more than 460 children from the region, provided therapy to more than 120 of them, helped many autistic children transition into regular classrooms and affected the lives of families from about 115 communities across more than 30 counties, he said.
"They will have to go out of the region, including out of the state, to get diagnosed," Cuvo said of the effect the closure of the center, which would happen under the state's worst-case scenario budget. "It will be a very sad day for children with autism and their families throughout Illinois."
Quinn said he would not approve a budget that does not include an income tax increase and that cuts funding for essential social services. He also bashed a rumored possibility of operating the state budget on a month-by-month basis for six months, referring to it as the "juvenile way to go" and comparing it to the actions of his predecessor, ousted Gov. Rod Blagojevich.
"We are going to fight until our last day, until our last breath to save this program," Quinn said. "I don't want to cut the heart and soul of Illinois."
adam.testa@thesouthern.com, 618-351-5031
We are working hard to save ours in KL too..
Tuesday, 16 June 2009
Parents of two autistic sons vaccinated one but not the other
Punch drunk as I am, required to read every alert regarding vaccine injury, I was struck by the facts issued on WKRG.com News 5. Reported by Kesshia Peyton, who interviewed Dr. Paul Offit, there is a surge of parents who are very angry at the diversion that anti-vaccine activists have created.
Tina Brown, mother of 2 boys with autism, decided not to vaccinate son Dylan because his brother Dalton had been inoculated and was subsequently diagnosed with autism. Sadly, even in the absence of vaccines Dylan demonstrated symptoms of autism at 4 months of age. (video interview here).
Mrs. Brown believes that there is great need for research in environmental, genetic, and DNA reasons for the onset of autism. She is part of a growing number of parents who want answers, other than the constant mention of vaccine injury.
Dr. Offit, author of Autism False Prophets, believes that "those who oppose vaccines have taken the autism story hostage". He agrees that there is profiteering and quackery in this arena. It is the fundamental action of false prophets, to entice and recruit vulnerable families. Frankly, I agree, but "snake oil" medicine is not relegated to autism. Parents need to be vigilant and at the same time practical about the information that is presented. Sometimes it is very painful to tease our emotions from clarity of thought. We so desperately need a reason, a cure, a miracle, our focus is skewed, and ultimately our children are victims again.
I don't have the answers, but I sure want them. Now.
Robin Hausman Morris is a National Examiner. You can see Robin's articles on Robin's Home Page.
Tina Brown, mother of 2 boys with autism, decided not to vaccinate son Dylan because his brother Dalton had been inoculated and was subsequently diagnosed with autism. Sadly, even in the absence of vaccines Dylan demonstrated symptoms of autism at 4 months of age. (video interview here).
Mrs. Brown believes that there is great need for research in environmental, genetic, and DNA reasons for the onset of autism. She is part of a growing number of parents who want answers, other than the constant mention of vaccine injury.
Dr. Offit, author of Autism False Prophets, believes that "those who oppose vaccines have taken the autism story hostage". He agrees that there is profiteering and quackery in this arena. It is the fundamental action of false prophets, to entice and recruit vulnerable families. Frankly, I agree, but "snake oil" medicine is not relegated to autism. Parents need to be vigilant and at the same time practical about the information that is presented. Sometimes it is very painful to tease our emotions from clarity of thought. We so desperately need a reason, a cure, a miracle, our focus is skewed, and ultimately our children are victims again.
I don't have the answers, but I sure want them. Now.
Author: Robin Hausman Morris
Autism and Toxins
Dr Harvey Karp has just written an excellent blog beginning to discuss the role environmental toxins play in causing autism. I agree that the huge rise in autism is real, and not just related to better diagnosis or reclassification of mental illness. Autism is most likely caused by a genetic predisposition and an environmental "trigger."
Studies showing that vaccines and their many constituents do not contribute to this problem are flawed, filled with specious reasoning and, for the most part funded by the pharmaceutical industry. Even articles in reputable medical journals are often written by doctors with an economic interest in continuing the vaccination program's status quo. This does not invalidate all of these studies but it certainly makes them suspect and a poor foundation for an argument excluding vaccines from the list of environmental influences on the increase in autism in America and elsewhere.
The facile dismissal of those of us calling for safer vaccinations and scrutiny of the current vaccine schedule is not scientifically based and polarizes the discussion. Perhaps most importantly, this dismissal is insulting to the thousands of parents and families who aver that their children have been harmed by vaccines. There are extremists choosing to ignore the facts in all vaccine/autism camps. I am not one of them.
Asking that cars be manufactured with more attention to safety and that driving is best when done safely does not make one "anti-car" or anti-driving. Asking for safer vaccinations and more judicious use of those we have does not make me or anyone else "anti-vaccine."
The studies Dr. Karp cites show pretty much the opposite of what he's claiming they do. The opposite. The Danish Study's data are misused by all and interpreted to suit one's needs. The Japanese study also shows a connection between the MMR split into three components and autism. Mainstream medical journals rarely will publish editorial comment impugning the quality or integrity of vaccines because they are dependent upon the good graces of the pharmaceutical industry for their publishing dollars. Seeking out reputable commentators is difficult because the extremists on both sides of this debate exaggerate their claims and speak louder and more unpleasantly as if this helps to make their points.
In April of 2009, the "Journal of the American Medical Association" spoke to the conflict of interest and possible corruption as the journals, the AMA, the AAP and other medical associations rely on money from the manufacturers of vaccines and other drugs.
I have been in practice thirty years and watched thousands of children get shots, not get shots, develop autism or remain developmentally "neurotypical." I have no proof that vaccines cause autism and would be very excited to have my large group of extremely healthy mostly unvaccinated children studied someday. It would be disingenuous to imply that non-vaccination might not lead to an increased incidence in vaccine-preventable illness. It would be equally disingenuous to state that this possibility poses a great threat to America's children. The risks of vaccinating the way we do now exceeds the benefits of this vaccine program. "Scientists" who suggest that experienced doctors ignore their eyes and ears are wrong. Detractors who say that we should ignore parents who are certain that vaccines caused their children's autism are wrong and often quite mean-spirited.
Dr. Karp, if you are going to talk and blog about kitchen cleaners, furniture polish, pesticides and other toxins, how can you possibly ignore the 30-40 injections of potentially risky material we give children in their first 24 months of life? There is absolutely no proof that these shots are as safe the makers say they are and certainly no proof that new combinations of vaccines and hastily created shots are safe enough for our children.
Certain childhood illnesses are far less common than before we had vaccines to decrease their numbers. When numbers drop so low for certain illnesses, we have to cast a strong critical eye on the possible side effects of a vaccine. This loving, reasonable principle can initially be applied by an individual parent to an individual child and family. We certainly have to add public health into this complicated calculus of risk versus reward. It remains very possible that changing the way we manufacture vaccines and being more selective in our use of them may have huge public health benefits. It would be unscientific and immoral to ignore these more difficult possibilities in favor of the easier answers in Dr. Karp's post. We can save more children if just think harder.
Giving children the chicken pox vaccine may lead to huge shingles problems in adults.
Autism is triggered by many environmental, infectious and other causes. Vaccines are one of these triggers. Believe the parents!
Jay Gordon, MD, FAAP
Studies showing that vaccines and their many constituents do not contribute to this problem are flawed, filled with specious reasoning and, for the most part funded by the pharmaceutical industry. Even articles in reputable medical journals are often written by doctors with an economic interest in continuing the vaccination program's status quo. This does not invalidate all of these studies but it certainly makes them suspect and a poor foundation for an argument excluding vaccines from the list of environmental influences on the increase in autism in America and elsewhere.The facile dismissal of those of us calling for safer vaccinations and scrutiny of the current vaccine schedule is not scientifically based and polarizes the discussion. Perhaps most importantly, this dismissal is insulting to the thousands of parents and families who aver that their children have been harmed by vaccines. There are extremists choosing to ignore the facts in all vaccine/autism camps. I am not one of them.
Asking that cars be manufactured with more attention to safety and that driving is best when done safely does not make one "anti-car" or anti-driving. Asking for safer vaccinations and more judicious use of those we have does not make me or anyone else "anti-vaccine."
The studies Dr. Karp cites show pretty much the opposite of what he's claiming they do. The opposite. The Danish Study's data are misused by all and interpreted to suit one's needs. The Japanese study also shows a connection between the MMR split into three components and autism. Mainstream medical journals rarely will publish editorial comment impugning the quality or integrity of vaccines because they are dependent upon the good graces of the pharmaceutical industry for their publishing dollars. Seeking out reputable commentators is difficult because the extremists on both sides of this debate exaggerate their claims and speak louder and more unpleasantly as if this helps to make their points.
In April of 2009, the "Journal of the American Medical Association" spoke to the conflict of interest and possible corruption as the journals, the AMA, the AAP and other medical associations rely on money from the manufacturers of vaccines and other drugs.
I have been in practice thirty years and watched thousands of children get shots, not get shots, develop autism or remain developmentally "neurotypical." I have no proof that vaccines cause autism and would be very excited to have my large group of extremely healthy mostly unvaccinated children studied someday. It would be disingenuous to imply that non-vaccination might not lead to an increased incidence in vaccine-preventable illness. It would be equally disingenuous to state that this possibility poses a great threat to America's children. The risks of vaccinating the way we do now exceeds the benefits of this vaccine program. "Scientists" who suggest that experienced doctors ignore their eyes and ears are wrong. Detractors who say that we should ignore parents who are certain that vaccines caused their children's autism are wrong and often quite mean-spirited.
Dr. Karp, if you are going to talk and blog about kitchen cleaners, furniture polish, pesticides and other toxins, how can you possibly ignore the 30-40 injections of potentially risky material we give children in their first 24 months of life? There is absolutely no proof that these shots are as safe the makers say they are and certainly no proof that new combinations of vaccines and hastily created shots are safe enough for our children.
Certain childhood illnesses are far less common than before we had vaccines to decrease their numbers. When numbers drop so low for certain illnesses, we have to cast a strong critical eye on the possible side effects of a vaccine. This loving, reasonable principle can initially be applied by an individual parent to an individual child and family. We certainly have to add public health into this complicated calculus of risk versus reward. It remains very possible that changing the way we manufacture vaccines and being more selective in our use of them may have huge public health benefits. It would be unscientific and immoral to ignore these more difficult possibilities in favor of the easier answers in Dr. Karp's post. We can save more children if just think harder.
Giving children the chicken pox vaccine may lead to huge shingles problems in adults.
Autism is triggered by many environmental, infectious and other causes. Vaccines are one of these triggers. Believe the parents!
Jay Gordon, MD, FAAP
Monday, 15 June 2009
Fear is the force behind autism
Temple Grandin, renowned author and representative of the autism world shares her views on the mystery of autism spectrum disorder. I first met Temple Grandin nearly 20 years ago, as she was invited to speak about the very disorder that controlled her own life. A few years later I met her mother, whose tenacity and devotion to Temple paved the way to living with autism.
Temple's clarifications remain to this day to be the most concrete and reliable source for me. Autism is a maze, and perhaps only someone who can articulate what it truly feels like can make some sense of it. Reported by Argusleader.com, Ms. Grandin recently spoke at Augustana College.She reiterated her message at Augustana: "Fear is the main emotion in autism".
I have always believed that autism is about control. Being the master of their own world, including everything from eye contact to tactile defensiveness is motivated by governing the fears of individuals with autism. It's about self protection, in my opinion.
The report continued:" The autistic mind is into detail. Build an area of strength," she said. But mundane matters can be overwhelming. She told her listeners that if someone released several cobras inside the auditorium, they'd all be constantly looking around for snakes as she spoke. Running water, loud noises and scratchy clothing all can set off similar alarm bells for the autistic."
I wrote Can you teach fear to your child with autism in order to address the real dangers in not recognizing peril. However re-teaching fear is quite another story. How do you eradicate a mental image of fear? How do you you dilute the power of the intangible? The report specified that " Grandin thinks the autistic can compensate, in part. "Social skills can be taught, but social-emotion relatedness may remain absent or weak,". Clearly, building trust for those on the spectrum is an imperative. It is the path to conquering fear.
Robin Hausman Morris is a National Examiner. You can see Robin's articles on Robin's Home Page.
Temple's clarifications remain to this day to be the most concrete and reliable source for me. Autism is a maze, and perhaps only someone who can articulate what it truly feels like can make some sense of it. Reported by Argusleader.com, Ms. Grandin recently spoke at Augustana College.She reiterated her message at Augustana: "Fear is the main emotion in autism".
I have always believed that autism is about control. Being the master of their own world, including everything from eye contact to tactile defensiveness is motivated by governing the fears of individuals with autism. It's about self protection, in my opinion.
The report continued:" The autistic mind is into detail. Build an area of strength," she said. But mundane matters can be overwhelming. She told her listeners that if someone released several cobras inside the auditorium, they'd all be constantly looking around for snakes as she spoke. Running water, loud noises and scratchy clothing all can set off similar alarm bells for the autistic."
I wrote Can you teach fear to your child with autism in order to address the real dangers in not recognizing peril. However re-teaching fear is quite another story. How do you eradicate a mental image of fear? How do you you dilute the power of the intangible? The report specified that " Grandin thinks the autistic can compensate, in part. "Social skills can be taught, but social-emotion relatedness may remain absent or weak,". Clearly, building trust for those on the spectrum is an imperative. It is the path to conquering fear.
Author: Robin Hausman Morris
Saturday, 13 June 2009
Haze struck again in Malaysia
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Air quality declines in Klang Valley
PETALING JAYA: Air quality in parts of the country have deteriorated due to local peat fires in Selangor and forest fires in Indonesia bringing over haze to Malaysia.
At 5pm Friday, Port Klang and Cheras recorded unhealthy API readings of 136 and 109 respectively. Shah Alam’s API reading went up to 120 from the 95 recorded at 11am.
Overall, 21 areas recorded good air quality while 26 areas recorded moderate air quality readings.
Other areas close to heading into the unhealthy quality range of between 101 and 200 include Kajang (100), Batu Muda (99), Petaling Jaya (93) and Putrajaya (92).
Compared to Thursday, yesterday’s API readings showed a general decline in air quality in the Klang Valley. Read More at The Star here
Friday, 12 June 2009
Tips on caring for a child with autism
Tips on caring for a child with autism
As doctors, families and schools learn more about autism, people living with autism have overcome obstacles to lead healthful, meaningful and productive lives.
However, a recent Easter Seals study found that parents of children with autism face a number of unique challenges. Nearly 80 percent are extremely or very concerned about their child's independence as an adult, compared to 32 percent of parents of typically developing children.These parents also report they're "financially drowning," with 74 percent fearing their child will not have enough financial support when they die. Only 18 percent of parents with typically developing children share this same fear.
Fortunately, there are ways for parents of children with autism to ease their concerns. Easter Seals, the nation's largest nonprofit provider of autism services, offers these tips:
•Find programs. A basic rule for treating autism is the earlier the intervention, the better. There are a range of options for people of all ages. Generally, the best programs build on the strengths of the individual with autism and provide a structured environment and support.
•Plan ahead. Ease fears about the child's financial future by taking steps today. It's never too early to speak with a financial advisor about special-needs trusts and other options that could help care for a son or daughter later in life.
•Take personal time. Families can find respite by having a professional or a trained volunteer come to their home to provide support or by enrolling their child in a day or weekend program. This allows the parents to enjoy recreational, social or other important activities with siblings or with each other.
•Connect with families. Parents can attend an Autism Community Forum hosted by Easter Seals. The event brings families, community service groups and support services together to learn from one another as they look at the care options available for people with autism in the area.
The forums can be a good way to develop better support networks and ultimately improve care for people who have autism.
This article provided by North American Precis Syndicate Inc.
Tuesday, 9 June 2009
Hand in hand with autistic kids
GAMAL Zahar, 18, taught himself to play the banjo. He hugs the banjo to his chest as he strums a tune. Although seemingly focused on his banjo, Gamal is also closely following the conversation in the room.
With him are Andrew Chew, 24, and Tan Seng Kit, 20. The lads sit patiently on their stools – being interviewed by the press is something they have to get used to as “stars”.
All three are autistic and will be performing at the Hand in Hand with the Stars concert, in which Chew and Tan will be drumming.
A group of about 10 people with autism, aged 12 and above, will be drumming at the concert. The lights in the theatre will be switched off and all the audience will see are the white gloves worn by the performers and the fluorescent drumsticks.
The concert, to raise awareness and funds for Parents’ Resource for Autism (PR4A), will be held on July 3 and 4 from 8pm to 9.30pm, and on July 5 from 5pm to 6.30pm, at the Kuala Lumpur Convention Centre, KLCC Plenary Theatre.
The boys have been practising since March, not only at rehearsals with local musician Edwin Nathaniel but also at home.
Auditions were conducted to choose the youngsters who could grasp the basic rhythm patterns.
Because people with autism are very reliant on routines, helping the youngsters rehearse meant being very precise and detailed in the instructions. Nathaniel observes that the children now not only have their own parts, they also know their friends’ parts and sometimes remind their friends of missed cues.
As a bonus, the Aseana Percussion Band will also be on hand to ensure the audience has a stomping good time at the concert.
At the concert venue, there will also be an art exhibition by 15 autistic artists. It will feature about 60 pieces of art (paintings and clay).
The funds raised will go towards PR4A’s plan to set up centres in the Klang Valley, Ipoh, Penang and Malacca and to train parents in various forms of therapy.
Tickets for the Hand in Hand with the Stars concert are available from Ticketpro Malaysia / Ticket Hotline (03-7880 7999 / 03-7880 4992).
With him are Andrew Chew, 24, and Tan Seng Kit, 20. The lads sit patiently on their stools – being interviewed by the press is something they have to get used to as “stars”.
All three are autistic and will be performing at the Hand in Hand with the Stars concert, in which Chew and Tan will be drumming.
A group of about 10 people with autism, aged 12 and above, will be drumming at the concert. The lights in the theatre will be switched off and all the audience will see are the white gloves worn by the performers and the fluorescent drumsticks.
Practice makes perfect: (From left) Tan, Chew and Gamal practising for the concert.
The concert, to raise awareness and funds for Parents’ Resource for Autism (PR4A), will be held on July 3 and 4 from 8pm to 9.30pm, and on July 5 from 5pm to 6.30pm, at the Kuala Lumpur Convention Centre, KLCC Plenary Theatre.
The boys have been practising since March, not only at rehearsals with local musician Edwin Nathaniel but also at home.
Auditions were conducted to choose the youngsters who could grasp the basic rhythm patterns.
Because people with autism are very reliant on routines, helping the youngsters rehearse meant being very precise and detailed in the instructions. Nathaniel observes that the children now not only have their own parts, they also know their friends’ parts and sometimes remind their friends of missed cues.
As a bonus, the Aseana Percussion Band will also be on hand to ensure the audience has a stomping good time at the concert.
At the concert venue, there will also be an art exhibition by 15 autistic artists. It will feature about 60 pieces of art (paintings and clay).
The funds raised will go towards PR4A’s plan to set up centres in the Klang Valley, Ipoh, Penang and Malacca and to train parents in various forms of therapy.
Tickets for the Hand in Hand with the Stars concert are available from Ticketpro Malaysia / Ticket Hotline (03-7880 7999 / 03-7880 4992).
Monday, 8 June 2009
Thank you Malay Mail for highlighting our SOS
Thank you Malay Mail for highlighting our SOS
Click here for detail...
"I LOVE you" are the only three words that are missing in his life.
Simple words they may be, but the joy, contentment and happiness that emanate from this simple phrase is one that blogger Shiok Guy aka Yong Yek Ming yearns and longs to hear with all his heart from his eldest son, Wei Jie.
autism
Wei Jie, 9, is suffering from an acute form of autism. He is non-verbal, displays repetitive behaviour of self-injury and is socially-impaired.
Click here for detail...
Friday, 29 May 2009
SOS! Autism Centre Closing Down - 14 June 2009
What is Autism? Kindly click here for google Information!
Both my sons are suffering from acute form of autism, and they have been going to this center for the past few months. This center was funded by a Kind Businessman via charity donation. Hence it has been offered as Free Service to those parents who cannot afford the full commercial service. I am one of those parent who need Early Intervention Program and cannot afford it.
The center was headed by a very experience teacher in autism management and intervention. He is a retiree and if he left this job I don't think he will be actively working for the good of autistic kids again. I want to secure his service and take over the operation of the center. I have the business experience and also autism management experience to turn this around.
We are not going to provide a free for all kind of services, but will be very affordable. We will have a trust fund setup to help those who cannot afford to pay for the service. Time is running out, 14 June 2009 is the deadline for the Current Center to cease operation. I would like to take this opportunity to thank the owner of the current center for his contribution in past years.
Why am I here asking for help? I have no other way to go and seeking the help from whoever I can get my hand on to. We need the following: -
1. Premise - prefer a corner lot house with some garden area where we can setup sand and water therapy area.
2. Musical - Since autistic kids are very artistic and musically inclined, I want to setup some musical class to explore their potential. Any good working Piano or Electronic piano are needed. Can Yamaha donate some? Anyone who know someone in Yamaha?
3. Art - Art supply for painting and others
4. Renovation - Can some good soul help to pay for the renovation and furnishing of the center?
5. Telecommunication - Telephone, Fax and Internet access
6. Funding - We need at least one year of funding before we can be self funded. I will work out the requirement once we have more people come into play and willing to help
7. Teaching material - I have plenty in my house becasue both my sons are autistic and I have invested over the years.
Anyone can help me to published all the above? I have 2 weeks to put thing together before they closed it down. 20 kids will be affected if the center is closed down without giving them an alternative to go.
Update
29 May 9:32pm : Immediately we need a place to move all the material to. A place where we can start to put all the thing together. Funding can be later since we need a place to continue teaching those kids after 14 June 2009.
For those who ask me about the account number, I will ask NST tomorrow to see if they can help as independent party. Using my account will be a BIG conflict of Interest.
If you want to help to donate cash, piano, or anything that we can use. Please send me an email at Shiokx@gmail.com with the subject line of "I love to help"
29 May 10:11pm: A few friend comment that my english is really suck and they cannot really understand what am I talking about. Since I am an engineer by training, let me put it in point form: -
I have also done some budget for the initiate fund required. We would need RM40K to last us until Dec 2009
The following is my Maybank Account detail: -
Account Name : Yong Yek Ming
Account Number : 164847018858
or Paypal
30 May, 17:31pm: I belief this is Zorro Account Number. If you feel more comfortable to donate to his account instead of my Maybank, please do so and the cause is the same.
Update 4 June, 2009: We have received pledge and cash donation, Casio Keyboard and personal help
Click the above image for full or larger view. Thank you very much for your support.
Regards
Yong Yek Ming aka Shiok Guy
+60 12 208 2818
Both my sons are suffering from acute form of autism, and they have been going to this center for the past few months. This center was funded by a Kind Businessman via charity donation. Hence it has been offered as Free Service to those parents who cannot afford the full commercial service. I am one of those parent who need Early Intervention Program and cannot afford it.
The center was headed by a very experience teacher in autism management and intervention. He is a retiree and if he left this job I don't think he will be actively working for the good of autistic kids again. I want to secure his service and take over the operation of the center. I have the business experience and also autism management experience to turn this around.
We are not going to provide a free for all kind of services, but will be very affordable. We will have a trust fund setup to help those who cannot afford to pay for the service. Time is running out, 14 June 2009 is the deadline for the Current Center to cease operation. I would like to take this opportunity to thank the owner of the current center for his contribution in past years.
Why am I here asking for help? I have no other way to go and seeking the help from whoever I can get my hand on to. We need the following: -
1. Premise - prefer a corner lot house with some garden area where we can setup sand and water therapy area.
2. Musical - Since autistic kids are very artistic and musically inclined, I want to setup some musical class to explore their potential. Any good working Piano or Electronic piano are needed. Can Yamaha donate some? Anyone who know someone in Yamaha?
3. Art - Art supply for painting and others
4. Renovation - Can some good soul help to pay for the renovation and furnishing of the center?
5. Telecommunication - Telephone, Fax and Internet access
6. Funding - We need at least one year of funding before we can be self funded. I will work out the requirement once we have more people come into play and willing to help
7. Teaching material - I have plenty in my house becasue both my sons are autistic and I have invested over the years.
Anyone can help me to published all the above? I have 2 weeks to put thing together before they closed it down. 20 kids will be affected if the center is closed down without giving them an alternative to go.
Update
29 May 9:32pm : Immediately we need a place to move all the material to. A place where we can start to put all the thing together. Funding can be later since we need a place to continue teaching those kids after 14 June 2009.
For those who ask me about the account number, I will ask NST tomorrow to see if they can help as independent party. Using my account will be a BIG conflict of Interest.
If you want to help to donate cash, piano, or anything that we can use. Please send me an email at Shiokx@gmail.com with the subject line of "I love to help"
29 May 10:11pm: A few friend comment that my english is really suck and they cannot really understand what am I talking about. Since I am an engineer by training, let me put it in point form: -
- The current Autism Center will cease operation on 14 June 2009 (CONFIRMED)
- 20 kids including my two sons will have no center to go after 14 June 2009
- We negotiate with the owner to take over the material and furnishing
- We need to find a new place, a corner lot house is ideal because we need outdoor/garden to setup Sand and Water Play Therapy
- We Have Not Setup a company just yet
- The idea is to have a SDN BHD as Center. This will be run as normal business center but provide affordable rate of service. The main Objective is to survive by itself.
- The SDN BHD Center will setup a trust fund to manage donation to help those needy.
- Immediate we need a House, Renovation and Funding for at least 1-2 years for Teachers and Operating Cost!
I have also done some budget for the initiate fund required. We would need RM40K to last us until Dec 2009
The following is my Maybank Account detail: -
Account Name : Yong Yek Ming
Account Number : 164847018858
or Paypal
30 May, 17:31pm: I belief this is Zorro Account Number. If you feel more comfortable to donate to his account instead of my Maybank, please do so and the cause is the same.
Update 4 June, 2009: We have received pledge and cash donation, Casio Keyboard and personal help
Click the above image for full or larger view. Thank you very much for your support.
Regards
Yong Yek Ming aka Shiok Guy
+60 12 208 2818
Brothers, Sisters and Friends who highlighted our SOS call (pls email me if you carry our SOS call): -
- Zoro-Unmasked
- Niamah!!!
- Hornbill Unleased
- Malaysia For All
- Dream A Little More Dream
- RUN IN DIVERSITY
- YITYIENG TAN
- onelikming's Mansion
- Susan Loone's Blog
- jelas.info
- Eyes Wide Open
Sunday, 17 May 2009
Erasing Autism
Erasing Autism
Scientists are closing in on the genes linked to autism. So why is Ari Ne'eman so worried?
Claudia Kalb
NEWSWEEK
From the magazine issue dated May 25, 2009
It's spring in Washington, and Ari Ne'e-man, with his navy suit and leather brief-case on wheels, is in between his usual flurry of meetings. Ne'eman is a master networker, a guy you'd think was born in a campaign office and bred in the halls of the Capitol. He's fluent in policy-speak and interacts seamlessly with high-level officials (he's just had lunch with the acting vice chair of the Equal Employment Opportunity Commission) and inquisitive reporters alike. He's formal but sociable and has a well-timed sense of humor. He also has a problem with velvet. I knew this about Ne'eman—he'd mentioned it when we first started talking more than a year ago—but now, in a D.C. coffee shop, he gets into the sensory details. His father used to drive a car that had fuzzy velvet-like cushioning, and it made Ne'eman crazy to sit in it. "I'd wince because I'd think about how it would feel to get that under your fingernails," he says. I think I see him shudder at the memory.
Ari Ne'eman is 21 years old and has Asperger syndrome, a high-functioning diag-nosis on the wide-ranging autism spectrum. Ne'eman's velvet aversion is triggered somewhere deep in his brain, a brain that he happens to relish. He doesn't want anybody to mess with or, God forbid, cure his Asperger's. It's who he is, who he's always been. It's why he's had ob-sessive interests since toddlerhood. At 2½, he saw a dinosaur skeleton at New York's American Museum of Natural History and announced, "That's a pterodactyl." From there he fixated on baseball, reciting players' names and stats ad nauseam, whether or not anyone was listening—a behavior experts call perseveration. Later it was Constitutional law. His friend Ben DeMarzo remembers driving with Ne'eman and two other classmates one high-school weekend. DeMarzo and the others wanted to listen to music—the Beatles were a favorite—but Ne'eman had other plans. "Ari made us listen to Supreme Court oral arguments. It was brutal," DeMarzo tells me. He was outnumbered—how'd he win? I ask. DeMarzo laughs. "Ari always wins," he says.
He certainly puts up a fight. Ne'eman is officially studying political science at the University of Maryland, Baltimore County, but he also runs the Autistic Self-Advocacy Network, a nonprofit he founded in 2006, the year after he graduated from high school. The task he has taken on is daunting and controversial: he wants to change the way the world views autism. Autism is not a medical mystery that needs solving, he argues. It's a disability, yes, but it's also a different way of being, and "neurodiversity" should be accepted by society. Autistic people (he prefers this wording to "people with autism," a term many parents use, because he considers the condition intrinsic to a person's makeup) must be accommodated in the classroom and workplace and helped to live independently as adults—and he is pushing to make this happen for everyone on the spectrum. They should also be listened to. "We're having a nation-al conversation about autism without the voices of people who should be at the center of that conversation," he says.
Ne'eman's network has local chapters in 15 states, and he works closely with organizations like the EEOC and the American Association of People With Disabilities. Neurodiversity activists see their mission as a fight for civil rights, and Ne'eman and others are willing to stir un-rest. "Ari's very straightforward," says Lee Grossman, head of the Autism Society of America, who supports many of Ne'eman's efforts. "He tells it like it is from his perspective." Ne'eman has taken on powerful organizations, specifically Autism Speaks, the largest science and advocacy group in the country, be-cause he believes they rely on fearful stereotypes and focus their research too heavily on what causes autism as opposed to improving quality of life for autistic people today. Last year he helped stop an edgy "ransom notes" ad campaign created by New York University's Child Study Center to raise awareness about autism. One said, "We have your son" and are "driving him into a life of complete isolation." It was signed "Asperger Syndrome." Ne'eman was appalled. "There's a misperception that autism is some thief in the night that takes a normal child and places an autistic child in its place," he says. "That's not true."
The autism spectrum itself, however, is a universe with multiple galaxies, including nonverbal toddlers who bite themselves and college grads who can't tell the differ-ence between sarcasm and seriousness. This complexity leads to passionate and conflicting viewpoints. Not everybody stands behind Ne'eman, and some adamantly op-pose his views. One major area of contention: scientific research, which includes the hunt for autism genes.
I knew Ne'eman had a surprising outlook on this and figured he'd have something to say about the recent news that scientists have found common gene variants that may account for up to 15 percent of all autism cases. This is big in a disorder that varies so enormously from one individual to the next. Environmental factors also play a role, but if scientists can test for specific genes—most of which have yet to be discovered—they may be able to intervene much sooner to help kids. One day they might even find a cure. This is exciting for parents who want to understand the roots of the disorder. Therapies—some helpful, some shams—vie for their attention and their pocketbooks, and they'd welcome better, more targeted treatments. But the new genetic advances concern Ne'eman. He doesn't believe autism can be, or should be, cured. His ultimate fear is this: a prenatal test for autism, leading to "eugenic elimination." If a test is developed one day, it will be used, he says. And that means people like him might cease to exist.
When I press Ne'eman on genetic research—doesn't it have some merit?—he says he doesn't oppose it outright, but he believes scientists must consider the ethical implications of their work far more carefully. Already couples are testing embryos for diseases like Huntington's, then choosing to implant only the healthy ones. And who can blame them? But autism isn't a fatal condition. Should people without the disorder be allowed to judge the quality of life of someone who has it? "That is a message that the world doesn't want us here," says Ne'eman, "and it devalues our lives."
The prospect of no more Ari Ne'emans—whether you agree with him or not—is haunting. Termination of fetuses with Down syndrome is routine today; given the fear that autism inspires in parents, why wouldn't it follow? And what would our world be like without autism? The vast differences among individuals on the spectrum make the notion even thornier: will parents start demanding to know whether their fetus will be low- or high-functioning? But it's also impossible to ignore the parents who say they'd do anything to free their children from isolation and pain. Some feel so hopeless so much of the time, they do wonder in private if their children would have been better off not born. And who can blame them?
Ne'eman battles a strange kind of image problem: his critics accuse him of not really being autistic. His mother, Rina, is particularly sensitive about this. "People who see Ari today have no idea where he's been," she says. As a young child, Ne'eman was verbally precocious but socially challenged. "I didn't understand the people around me, and they didn't understand me," he says. He was bullied and ostracized—back then he didn't look at people; he flapped his hands and paced incessantly (he still does both today); he brought newspapers to elementary school as leisure reading. "I think the word 'freak' may have come up," he says. He was, at one point, segregated from his peers in a special-ed school. That led to struggles with depression and anxiety so severe he would pick at his face until it bled. I asked Ne'eman how he manages all the professional mingling he does today. Small talk makes him uncomfortable, but he's learned to play along. Still, none of it is easy. "You come out of a meeting and you've put on a mask, which involves looking people in the eye, using certain mannerisms, certain phrases," he says. "Even if you learn to do it in a very seamless sort of way, you're still putting on an act. It's a very ex-hausting act."
He remembers being taught in social-skills training that when people are happy they smile with all their teeth, and when they're sad they wear exaggerated frowns. "I was always wondering, 'Why is everybody around me neither happy or sad? They don't have emotions'," he says. When you're autistic, social interaction can be like a foreign language: no matter how fluent you become, you're never a native speaker. Katie Miller, a fellow activist, jokes that "Ari is the only autistic we know whose special interest and talent lies in networking." But, she says, "it didn't come naturally. He's learned it the way every-body else learns algebra." Ne'eman has a way of taming the stress he feels: he wears a tie because it puts a soothing pressure on his neck. "It's a good way of calming my anxiety," he says.
One of Ne'eman's latest efforts is a new public-service announcement called "No Myths," which he helped create with the Dan Marino Foundation, a funder of autism research. In it, Ne'eman appears in a red sweater and tie along with others on the spectrum, including a man who speaks through a communication device. "Our futures have not been stolen," Ne'eman says. "Our lives are not tragedies." The message is clear: We stand before you. Don't make us go away.
URL: http://www.newsweek.com/id/197813
-
Scientists are closing in on the genes linked to autism. So why is Ari Ne'eman so worried?
Claudia Kalb
NEWSWEEK
From the magazine issue dated May 25, 2009
It's spring in Washington, and Ari Ne'e-man, with his navy suit and leather brief-case on wheels, is in between his usual flurry of meetings. Ne'eman is a master networker, a guy you'd think was born in a campaign office and bred in the halls of the Capitol. He's fluent in policy-speak and interacts seamlessly with high-level officials (he's just had lunch with the acting vice chair of the Equal Employment Opportunity Commission) and inquisitive reporters alike. He's formal but sociable and has a well-timed sense of humor. He also has a problem with velvet. I knew this about Ne'eman—he'd mentioned it when we first started talking more than a year ago—but now, in a D.C. coffee shop, he gets into the sensory details. His father used to drive a car that had fuzzy velvet-like cushioning, and it made Ne'eman crazy to sit in it. "I'd wince because I'd think about how it would feel to get that under your fingernails," he says. I think I see him shudder at the memory.
Ari Ne'eman is 21 years old and has Asperger syndrome, a high-functioning diag-nosis on the wide-ranging autism spectrum. Ne'eman's velvet aversion is triggered somewhere deep in his brain, a brain that he happens to relish. He doesn't want anybody to mess with or, God forbid, cure his Asperger's. It's who he is, who he's always been. It's why he's had ob-sessive interests since toddlerhood. At 2½, he saw a dinosaur skeleton at New York's American Museum of Natural History and announced, "That's a pterodactyl." From there he fixated on baseball, reciting players' names and stats ad nauseam, whether or not anyone was listening—a behavior experts call perseveration. Later it was Constitutional law. His friend Ben DeMarzo remembers driving with Ne'eman and two other classmates one high-school weekend. DeMarzo and the others wanted to listen to music—the Beatles were a favorite—but Ne'eman had other plans. "Ari made us listen to Supreme Court oral arguments. It was brutal," DeMarzo tells me. He was outnumbered—how'd he win? I ask. DeMarzo laughs. "Ari always wins," he says.He certainly puts up a fight. Ne'eman is officially studying political science at the University of Maryland, Baltimore County, but he also runs the Autistic Self-Advocacy Network, a nonprofit he founded in 2006, the year after he graduated from high school. The task he has taken on is daunting and controversial: he wants to change the way the world views autism. Autism is not a medical mystery that needs solving, he argues. It's a disability, yes, but it's also a different way of being, and "neurodiversity" should be accepted by society. Autistic people (he prefers this wording to "people with autism," a term many parents use, because he considers the condition intrinsic to a person's makeup) must be accommodated in the classroom and workplace and helped to live independently as adults—and he is pushing to make this happen for everyone on the spectrum. They should also be listened to. "We're having a nation-al conversation about autism without the voices of people who should be at the center of that conversation," he says.
Ne'eman's network has local chapters in 15 states, and he works closely with organizations like the EEOC and the American Association of People With Disabilities. Neurodiversity activists see their mission as a fight for civil rights, and Ne'eman and others are willing to stir un-rest. "Ari's very straightforward," says Lee Grossman, head of the Autism Society of America, who supports many of Ne'eman's efforts. "He tells it like it is from his perspective." Ne'eman has taken on powerful organizations, specifically Autism Speaks, the largest science and advocacy group in the country, be-cause he believes they rely on fearful stereotypes and focus their research too heavily on what causes autism as opposed to improving quality of life for autistic people today. Last year he helped stop an edgy "ransom notes" ad campaign created by New York University's Child Study Center to raise awareness about autism. One said, "We have your son" and are "driving him into a life of complete isolation." It was signed "Asperger Syndrome." Ne'eman was appalled. "There's a misperception that autism is some thief in the night that takes a normal child and places an autistic child in its place," he says. "That's not true."
The autism spectrum itself, however, is a universe with multiple galaxies, including nonverbal toddlers who bite themselves and college grads who can't tell the differ-ence between sarcasm and seriousness. This complexity leads to passionate and conflicting viewpoints. Not everybody stands behind Ne'eman, and some adamantly op-pose his views. One major area of contention: scientific research, which includes the hunt for autism genes.
I knew Ne'eman had a surprising outlook on this and figured he'd have something to say about the recent news that scientists have found common gene variants that may account for up to 15 percent of all autism cases. This is big in a disorder that varies so enormously from one individual to the next. Environmental factors also play a role, but if scientists can test for specific genes—most of which have yet to be discovered—they may be able to intervene much sooner to help kids. One day they might even find a cure. This is exciting for parents who want to understand the roots of the disorder. Therapies—some helpful, some shams—vie for their attention and their pocketbooks, and they'd welcome better, more targeted treatments. But the new genetic advances concern Ne'eman. He doesn't believe autism can be, or should be, cured. His ultimate fear is this: a prenatal test for autism, leading to "eugenic elimination." If a test is developed one day, it will be used, he says. And that means people like him might cease to exist.
When I press Ne'eman on genetic research—doesn't it have some merit?—he says he doesn't oppose it outright, but he believes scientists must consider the ethical implications of their work far more carefully. Already couples are testing embryos for diseases like Huntington's, then choosing to implant only the healthy ones. And who can blame them? But autism isn't a fatal condition. Should people without the disorder be allowed to judge the quality of life of someone who has it? "That is a message that the world doesn't want us here," says Ne'eman, "and it devalues our lives."
The prospect of no more Ari Ne'emans—whether you agree with him or not—is haunting. Termination of fetuses with Down syndrome is routine today; given the fear that autism inspires in parents, why wouldn't it follow? And what would our world be like without autism? The vast differences among individuals on the spectrum make the notion even thornier: will parents start demanding to know whether their fetus will be low- or high-functioning? But it's also impossible to ignore the parents who say they'd do anything to free their children from isolation and pain. Some feel so hopeless so much of the time, they do wonder in private if their children would have been better off not born. And who can blame them?
Ne'eman battles a strange kind of image problem: his critics accuse him of not really being autistic. His mother, Rina, is particularly sensitive about this. "People who see Ari today have no idea where he's been," she says. As a young child, Ne'eman was verbally precocious but socially challenged. "I didn't understand the people around me, and they didn't understand me," he says. He was bullied and ostracized—back then he didn't look at people; he flapped his hands and paced incessantly (he still does both today); he brought newspapers to elementary school as leisure reading. "I think the word 'freak' may have come up," he says. He was, at one point, segregated from his peers in a special-ed school. That led to struggles with depression and anxiety so severe he would pick at his face until it bled. I asked Ne'eman how he manages all the professional mingling he does today. Small talk makes him uncomfortable, but he's learned to play along. Still, none of it is easy. "You come out of a meeting and you've put on a mask, which involves looking people in the eye, using certain mannerisms, certain phrases," he says. "Even if you learn to do it in a very seamless sort of way, you're still putting on an act. It's a very ex-hausting act."
He remembers being taught in social-skills training that when people are happy they smile with all their teeth, and when they're sad they wear exaggerated frowns. "I was always wondering, 'Why is everybody around me neither happy or sad? They don't have emotions'," he says. When you're autistic, social interaction can be like a foreign language: no matter how fluent you become, you're never a native speaker. Katie Miller, a fellow activist, jokes that "Ari is the only autistic we know whose special interest and talent lies in networking." But, she says, "it didn't come naturally. He's learned it the way every-body else learns algebra." Ne'eman has a way of taming the stress he feels: he wears a tie because it puts a soothing pressure on his neck. "It's a good way of calming my anxiety," he says.
One of Ne'eman's latest efforts is a new public-service announcement called "No Myths," which he helped create with the Dan Marino Foundation, a funder of autism research. In it, Ne'eman appears in a red sweater and tie along with others on the spectrum, including a man who speaks through a communication device. "Our futures have not been stolen," Ne'eman says. "Our lives are not tragedies." The message is clear: We stand before you. Don't make us go away.
URL: http://www.newsweek.com/id/197813
-
Saturday, 16 May 2009
The Autism Train Journey
As a father who has 2 sons suffering from Autism, has make me see the world and life in different context. First thing is that I have already discounted my life, ambition and happiness; to be replaced by dedication to bring about better quality of life for my two sons. What is the life journey of a autism family? The way I see it, The Autism Journey is like those of a train ride with destination uncertain. The destination is this context will be the death of the parent (father or mother). In here, I will just simple using me, a father as an example.
The Beginning
Once I found out about my sons condition, The Autism Train Journey Begin! We step into the train ride and going toward the first station stop. We meet a lot of people in the train and most people does not know what the hacked is happen to my sons, so do I? I am totally lost and just listen to everyone and try every possible remedies suggestion by all the passengers of the train.
The Stations' Stop
At every station, some passenger has gone for good (death) and some new one arrive. The older passenger has get used to my sons and they all show and shower us with love and care. There are those who gave us the hard time, but what the hack I cannot make everyone happy, right?
More Stations' Stop
After a few stations stops and goes, we get use to the situation with annoying new passenger, loving and caring old passenger, bad and heartless old passenger and we also missed those who left us for good in last station stop. They are gone for good!
The Final Destination
Then we start to think about where are we going? Where is our destination. After a much soul searching I realized that next station stop could be my final destination. A final destination not about autism cured or my sons can be independent living alone. The final destination is about I am leaving the train and left both my sons alone in the train ride. They still have a long and lonely ride ahead.
It really sound scary when I imagine them alone in this ride without me holding them, protecting them and loving them. Will the other passenger kind and loving enough to take over my role?
During the ride until now, I have seen some good, bad and "Oh My God" kind of passengers. How then can I leave the ride knowing they will not be in good hand.
Planning
After I realized that the next stop could be my final destination. I start to do the following: -
-
The Beginning
Once I found out about my sons condition, The Autism Train Journey Begin! We step into the train ride and going toward the first station stop. We meet a lot of people in the train and most people does not know what the hacked is happen to my sons, so do I? I am totally lost and just listen to everyone and try every possible remedies suggestion by all the passengers of the train.
The Stations' Stop
At every station, some passenger has gone for good (death) and some new one arrive. The older passenger has get used to my sons and they all show and shower us with love and care. There are those who gave us the hard time, but what the hack I cannot make everyone happy, right?
More Stations' Stop
After a few stations stops and goes, we get use to the situation with annoying new passenger, loving and caring old passenger, bad and heartless old passenger and we also missed those who left us for good in last station stop. They are gone for good!The Final Destination
Then we start to think about where are we going? Where is our destination. After a much soul searching I realized that next station stop could be my final destination. A final destination not about autism cured or my sons can be independent living alone. The final destination is about I am leaving the train and left both my sons alone in the train ride. They still have a long and lonely ride ahead.
It really sound scary when I imagine them alone in this ride without me holding them, protecting them and loving them. Will the other passenger kind and loving enough to take over my role?
During the ride until now, I have seen some good, bad and "Oh My God" kind of passengers. How then can I leave the ride knowing they will not be in good hand.
Planning
After I realized that the next stop could be my final destination. I start to do the following: -
- Love and get to know every passengers as much as possible.
- Tell them about autism and my sons.
- Share with them my griefs and joys.
- Always live my life, spend the time and loving my sons as if next station stop is my last, My Final Destination!
- Plan financially, they have the money to pay for their ride until Their Final Destination Too
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Friday, 15 May 2009
Autism's lonely questions
Autism's lonely questionsby The Oregonian Editorial Board
Friday May 15, 2009, 12:33 AM
Without better research, Oregon families will keep exhausting themselves looking for answers
If any medical condition warrants more attention and research, it is autism. The uncertainty surrounding this common brain disorder takes a terrible toll on families -- especially in Oregon, where diagnosed autism rates are higher than the national average.
It is a condition characterized by questions rather than answers: Who will help us? Will I ever connect again with my child? How much hope should we have? Do any treatments work, and what if we can't afford any of them?
No family should have to face these questions alone.
About 1 in 150 children in the United States has an autism spectrum disorder, according to the Centers for Disease Control and Prevention. The rate in Oregon is considerably higher. Some estimates based on school data peg the number as high as 1 in 87.
Behind the numbers are a thousand stories of parents struggling to cope. They are told the disorder is incurable, but lately they've been peppered with stories of miracle cures. They read about various promising behavioral treatments, which tend not to be covered by health insurance or offered through the local public school.
They are told autism is biological. Or maybe environmental.
On top of all that come the dirty looks at the grocery store.
Perhaps this helps explain why disagreements within the autism community can be so fierce and personal. The stakes are so high, the parenting can be so lonely, and the research is still so thin.
Portland State University is hosting a statewide conference this weekend about educating children with autism. The keynote speaker, Dr. Laura Schreibman, is a longtime advocate of basing autism treatments on good science and not on anecdotes and testimonials. She's a controversial figure herself, at least among people who think she dismisses promising new treatments.
But Schreibman brings up the right point: The need for better autism research is painfully clear.
The federal government is preparing to invest $1.1 billion in "comparative effectiveness research," which will evaluate and rank various therapies for different health problems. The Obama administration also intends to boost funding for medical research in general.
It's not clear whether autism will be treated as a priority area, but it should be. Without better methods to diagnose and treat autism, and without a better understanding of what causes the disorder, families will continue to bankrupt themselves looking for homegrown cures. These families need more guidance. So do the health insurers and school districts that are supposed to act as partners.
We don't know the answers.
We're still learning the right questions to ask.
-
Friday May 15, 2009, 12:33 AM
Without better research, Oregon families will keep exhausting themselves looking for answers
If any medical condition warrants more attention and research, it is autism. The uncertainty surrounding this common brain disorder takes a terrible toll on families -- especially in Oregon, where diagnosed autism rates are higher than the national average.
It is a condition characterized by questions rather than answers: Who will help us? Will I ever connect again with my child? How much hope should we have? Do any treatments work, and what if we can't afford any of them?
No family should have to face these questions alone.About 1 in 150 children in the United States has an autism spectrum disorder, according to the Centers for Disease Control and Prevention. The rate in Oregon is considerably higher. Some estimates based on school data peg the number as high as 1 in 87.
Behind the numbers are a thousand stories of parents struggling to cope. They are told the disorder is incurable, but lately they've been peppered with stories of miracle cures. They read about various promising behavioral treatments, which tend not to be covered by health insurance or offered through the local public school.
They are told autism is biological. Or maybe environmental.
On top of all that come the dirty looks at the grocery store.
Perhaps this helps explain why disagreements within the autism community can be so fierce and personal. The stakes are so high, the parenting can be so lonely, and the research is still so thin.
Portland State University is hosting a statewide conference this weekend about educating children with autism. The keynote speaker, Dr. Laura Schreibman, is a longtime advocate of basing autism treatments on good science and not on anecdotes and testimonials. She's a controversial figure herself, at least among people who think she dismisses promising new treatments.
But Schreibman brings up the right point: The need for better autism research is painfully clear.
The federal government is preparing to invest $1.1 billion in "comparative effectiveness research," which will evaluate and rank various therapies for different health problems. The Obama administration also intends to boost funding for medical research in general.
It's not clear whether autism will be treated as a priority area, but it should be. Without better methods to diagnose and treat autism, and without a better understanding of what causes the disorder, families will continue to bankrupt themselves looking for homegrown cures. These families need more guidance. So do the health insurers and school districts that are supposed to act as partners.
We don't know the answers.
We're still learning the right questions to ask.
-
