Autism Speaks...

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Autism Speaks...

Postby Erilyn Cureheart » July 2nd, 2006, 12:31 am

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Autism is on the rise now and it has to be addressed and can't just be pushed aside anymore.
Statics show that there is:
1 in 166 Children Diagnosed with Autism
and there is as many as 1.7 Million Americans with some form of Autism.

There is alot of speculation as to why this happens, something in the environment, to much mercury in childhood vaccines, genes... Scientists are not certain. But it is certain that Autism is on the rise... just 5 years before there were only 1 in 500 Americans with autism.

So, if you want to know, want to understand get a few questions answered..
http://www.autismspeaks.org
http://www.autismspeaks.org/video/index.php
http://www.autismspeaks.org/whatisit/video.php


This trully is my everyday life...
http://206.252.155.54/media/d_200605_Au ... MedRes.wmv

Sage
n.
One venerated for experience, judgment, and wisdom.

Good name for a child who will teach you everyday of your life.
Last edited by Erilyn Cureheart on February 20th, 2007, 8:49 pm, edited 2 times in total.
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Postby Frayja » July 2nd, 2006, 1:50 am

Hmm what to say. This topic affects me more then most realize...

These videos are basically showing what I do for a living... except that my clients are adults, in some aspects its very hard in others its a walk in the park it really does depend on what they choose to do i.e. there mood.

I watched the second video, I laughed at some of the stuff being said because I have seen it lived it only difference is this is my job , not someone I love. In some aspects that makes it that much easier to walk away because its not part of my job to care matter a fact it makes my job easier not to care. All these children and adults have a right to a good life as a “normal” person but yet once they hit a certain age most people shun them, as they don’t understand them. Almost always they are going to need some sort of care in there life. It really is a huge blow to there self esteem not to mention there mind set when (yes I do mean when just because they are special needs doesn’t mean there are stupid) that the one or 3 people in there life that is the MOST important to them are paid to be there. Not something I want to learn how to cope with but yet most of these children do because there is always going to be care involved

I don’t know how many people out there have children like this. I know JoJo has Sage perhaps that’s why we are so close because I do understand what day-to-day life she is living with a child that is special needs.
/spanks
~Don't give me your attitude, I have one of my own~
It's better to die on your feet, then to live life on your knees.
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Postby Erilyn Cureheart » July 2nd, 2006, 2:16 am

It's interesting to see people's reaction when Sage has an episode in a resturaunt. He will start yelling and sometimes scream cause there is way to much noise going on. Some places he likes and some places he cant deal with. I can take him to Applebee's and he freaks out, then I take him to Panda Express and he is fine.
I get major dirty looks from the people around me, even family members who don't know how to handle and say.. "Oh, you need to discipline your child." :roll:

The "running scared" part of the video, That is a reality for me. I broke down and bought a little puppy back pack that has a tether to it so that I can have a secondary procaution just incase Sage lets go of my hand and decides to make a mad dash to "play" with Mommy.

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Last edited by Erilyn Cureheart on February 20th, 2007, 8:53 pm, edited 1 time in total.
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Postby Erilyn Cureheart » July 17th, 2006, 9:19 pm

Geez, I realize that this forum is no place for this certain "world event"

I trully want my post moved from this forum. I should of never put it in here.. I don't want this topic associated with this forum anymore.
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Postby Wenceslas » July 18th, 2006, 12:29 am

Why?

Just because you violently disagreed with one particular thread?
If that's the case - don't be so ... ignorant. That's that thread - this is this one. Most of these threads are rants of some kind or another - sometimes they turn into fine arguements.
The two do not interact.

Not many of us have an opinion on autism because we don't interact with autistics. I'm sure several of us have watched Rainman though.
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Postby Wenceslas » July 18th, 2006, 3:13 am

Now tell us why you think autism is on the rise?

Is it because some yahoos think they have a better handle on it and they believe everyone is autistic to a degree? A bit extreme perhaps...
Are we more aware of it or are we finding other people with slightly different names to their problesm now being classed as autistics?
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What Happens When They Grow Up

Postby Erilyn Cureheart » July 18th, 2006, 4:07 am

What Happens When They Grow Up
Teenagers and young adults are the emerging face of autism as the disorder continues to challenge science and unite determined families.



By Barbara Kantrowitz and Julie Scelfo
Newsweek
Nov. 27, 2006 issue - Chicken and potatoes. Chicken and potatoes. Danny Boronat wants chicken and potatoes. He asks for it once, twice ... 10 times. In the kitchen of the family's suburban New Jersey home, Danny's mother, Loretta, chops garlic for spaghetti sauce. No chicken and potatoes, she tells Danny. We're having spaghetti. But Danny wants chicken and potatoes. Chicken and potatoes. His 12-year-old sister, Rosalinda, wanders in to remind her mother about upcoming basketball tryouts. His brother Alex, 22, grabs some tortilla chips and then leaves to check scores on ESPN. His other brother Matthew, 17, talks about an upcoming gig with his band. Danny seems not to notice any of this. "Mom," he asks in a monotone, "why can't we have chicken and potatoes?" If Danny were a toddler, his behavior would be nothing unusual. But Danny Boronat is 20 years old. "That's really what life with autism is like," says Loretta. "I have to keep laughing. Otherwise, I would cry."
Autism strikes in childhood, but as thousands of families like the Boronats have learned—and thousands more are destined to learn—autism is not simply a childhood disorder. Two decades into the surge of diagnoses that has made autism a major public health issue, a generation of teenagers and young adults is facing a new crisis: what happens next?

As daunting as that question may be, it's just the latest in the endless chain of challenges that is life for the dedicated parents of children with autism. Twenty years ago, they banded together—largely out of desperation—to raise awareness of a once rarely diagnosed, often overlooked disease. They are united by the frustration of dealing with a condition that has no known cause and no cure. They have lobbied passionately to get better education for their kids and more money for research into autism, a neurological disorder characterized by language problems, repetitive behaviors and difficulty with social interaction. At the same time, more sophisticated epidemiology has revealed the true magnitude of the problem. Autism is now estimated to affect from one in 500 to one in 166 children—or as many as 500,000 Americans under 21, most male. That includes individuals with a wide range of abilities—from socially awkward math whizzes to teens who aren't toilet trained—but who all fit on what scientists now consider a spectrum of autism disorders.

The culmination of much of this parental activism is the Combating Autism Act, which was pushed by a collection of advocacy groups like Cure Autism Now, led by Hollywood producer Jon Shestack and his wife, Portia Iverson; Autism Speaks, started by Bob Wright, CEO and chairman of NBC Universal, and the Deirdre Imus Environmental Center for Pediatric Oncology. The bill unanimously passed the U.S. Senate in August but was blocked in the House by Texas Republican Joe Barton, chair of the House Committee on Energy and Commerce. In a September meeting, Barton told autism activists that he would continue to oppose their legislation, which earmarks $945 million for research over the next five years, because it conflicted with his own proposal to reform the National Institutes of Health. As a result, autism advocates began inundating him with faxes and phone calls and lambasting him in the press. To advance the cause of research, radio host Don Imus joined in and pressured Barton on the air, calling the congressman, among other things, "a lying, fat little skunk from Texas."

Now that the Democrats have won the House, Barton will lose his chairmanship in January and NEWSWEEK has learned that he is attempting to pass a compromise version of the bill before then. If passed, the House bill would fund a new push for early diagnosis, which is critical to starting therapy as soon as possible. In a particular victory for parents, the legislation specifies that the research oversight committee should include at least one person with autism and a parent of a child with autism.
The House bill authorizes money for research into many questions, including whether environmental factors may trigger autism. One point of contention: the Senate bill mandated a specific amount of money for the NIH to research the role environmental factors might play in causing autism. But Barton resisted, and now the specificity about how much should be spent and where has been lost in the compromise version. Still, a Barton bill could come up for a vote as early as the first week in December and the legislation, says Alison Singer, the mother of a daughter with autism and an executive at the advocacy group Autism Speaks, "is probably the single most important thing that could happen besides the cure."

A win in Washington may lift their spirits, but a legislative victory won't really change much for the Boronats and others like them. Some kids have made dramatic progress after intensive physical and behavioral therapy; many others still struggle with basic activities. Often, when lower-functioning young people reach 18, their parents will establish legal guardianship to protect them. But no matter what level they've reached, many will need help for the rest of their lives. Most government-sponsored educational and therapeutic services stop at the age of 21, and there are few residential facilities and work programs geared to the needs of adults with autism. "Once they lose the education entitlement and become adults, it's like they fall off the face of the earth" as far as government services are concerned, says Lee Grossman, president and CEO of the Autism Society of America, a major national-advocacy group.

According to the Harvard School of Public Health, it can cost about $3.2 million to care for a person with autism over a lifetime. Caring for all persons with autism costs an estimated $35 billion per year, the same study says. Families with limited financial resources are particularly hard hit. Other chronic diseases like diabetes are covered by insurance. But parents of youngsters with autism "have to navigate a maze and, if they find providers, then they have to figure out how to pay for it," says Singer. Grossman's early wish for the Combating Autism Act was that it would address the dire needs of autistic adults, and he drafted 30 pages of service-related issues. But that part was never introduced because a consortium of activists working on the bill concluded, for the sake of political expediency, that the bill shouldn't try to take on too much. In this light, restraint seems especially critical now, when the Iraq war has siphoned off so much federal money. "It's like a forest fire running through science and it burns a lot of trees down," says Dan Geschwind, a UCLA neurogeneticist. However, advocacy groups vow that the moment the bill passes, government funding for adult services will become their next priority. Wright believes there is substantial congressional support for this, possibly from Sen. Hillary Clinton.

Moving through adolescence to adulthood is never easy, but autism transforms even the most routine activities into potential minefields. Recognizing the norms of teen behavior can be a Sisyphean task. Helen Motokane's daughter, Christine, 14, has Asperger's syndrome, a high-functioning form of the disorder. She struggles to fit in at her Los Angeles public school—and that means hiding parts of her true self. One secret: she loves Barbie. "She knows it's not cool to wear clothes with Barbie logos, so she tries to keep that at home," says Helen, who gently prods her daughter into developing more mature interests. "She says, 'You're trying to make me grow up, aren't you? You want me to do all these things right away.' I go, 'No, no, no.' I reassure her that we're not trying to push her." But an hour or two later, her mother says, Christine will ask, "Is it OK if I like Disney Princess even though other kids my age don't like it?"

Keri Bowers of Thousand Oaks, Calif., says her son, Taylor Cross, 17, seems perfectly normal at first. But sometimes he'll just blurt out what he's thinking without any internal censorship. Passing a stranger on the street, he might say, "You're in a wheelchair!" "When you're socially odd, people are afraid," Bowers says. "They want to get away from you and cross to the other side of the street." Not surprisingly, Taylor had no friends at all in the public school he attends until he began to meet other teens with autism—young people his mother describes as equally "quirky."

In one way, he's not quirky at all. "He's attracted to girls," Bowers says, "but he's shy. He doesn't really know how to talk to them." A few months ago, he asked out a girl from his school who does not have autism but who had been friendly to him. Bowers had a psychologist friend shadow the couple at the movies. "Taylor only spoke about subjects he was interested in," Bowers says. "He wouldn't do a reciprocal back-and-forth conversation on topics about her." Still, when Bowers later asked if he wanted to kiss the girl, Taylor surprised his mother with his sensitivity. "He said, 'Yes, but she's very religious and I would never do that'."

As young people with autism approach adulthood, some parents can't help but feel the huge gaps between their child's lives and others the same age. "It's very hard, especially in our competitive society where people strive for perfection," says Chantal Sicile-Kira, whose son, Jeremy, 17, can communicate only by pointing to letters on an alphabet board. The San Diego resident hosts "The Real World of Autism With Chantal" on the Autism One Radio Internet station and wrote "Adolescents on the Autism Spectrum" (Penguin, 2006). Like many youngsters with autism, Jeremy finds new environments difficult. "If he walks into a new store," his mother says, "and there's horrendous fluorescent lighting, within 10 minutes I'll look down and he's starting to wet himself." Despite such challenges, Sicile-Kira plans to help Jeremy live on his own when he's an adult—perhaps rooming with another young person with autism.

Independent living is a major goal of many families and, with the help of therapy, thousands of youngsters who in earlier generations would have been consigned to institutions are now going to college and looking forward to a normal life with a job. But for every one who makes it, there are many more young people like Danny Boronat, who has come so far and yet still faces much uncertainty. Once unable to utter a sentence, Danny now reads at a second-grade level, competes in the Special Olympics and willingly takes on household chores like loading the dishwasher. But he also can spend hours playing with water. He picks obsessively at his cuticles, and sometimes cuts himself (his mother tries to hide any scissors in the house). He has no close friends. Next year he'll turn 21 and will no longer be eligible for the workshop where he does simple assembly-line work three days a week. After that? No one knows, not even his parents. "It's terrifying," says his mother, who started her own charity called DannysHouse to focus on adults.

A few states like California and Connecticut, newly aware of the crisis, have launched efforts to meet adult needs. But until programs are widely available, families are left to cobble together a patchwork of solutions—from informal day care to hourly caretakers to private residential programs. But these are stopgap measures. Parents worry that they will run out of money to pay for these services—and that they won't be around forever to arrange them for their children.

It's understandable that these parents would feel distraught. Many adults with autism require so much special care that it's hard to imagine anyone but a loving family member willing to provide it. "My wife and I are concerned about what's going to happen to our son when we pass on," says Lee Jorwic, whose son Christopher, 17, is unable to speak even though he's been in therapy since childhood. At 6 feet 4 inches and 290 pounds, Christopher is "our gentle giant," his father says. But because of his disabilities, even the most routine tasks require extraordinary preparations. Two years ago, for example, Christopher got an eye infection. He couldn't sit still long enough for the doctor to perform an exam so he had to go under anesthesia twice "just so the guy could look in his eye," his father says. Grossman says the Autism Society gets hundreds of calls every day from families like the Jorwics. "The most distressing, most disheartening, are from parents of older kids, parents who are at the end of life," he says. "They've been fighting this all their life, and they don't have a place for the kid after they die."

The natural successors to parents as caretakers would be siblings. Some families feel that's too much of a burden; others say that's a natural part of life in a family with autism. When one sibling has autism, the needs of so-called neurotypical children may seem to come second. Beth Eisman of Potomac, Md., recently sent her oldest daughter, Melanie, 18, off to college. Her goal for her younger daughter, Dana, 16, is more basic: independence. Dana's tantrums limited the family's participation in Melanie's school activities. "The old days were pretty bad," Eisman says. "Melanie often took the brunt of it." Now that Melanie is gone, Dana feels the loss. Eisman says Dana often goes into her sister's room and says, "I want Melanie."

Many families are sustained knowing that, by raising awareness of autism, they have already given their children the gift of a meaningful identity. "If this was 10 years ago, my daughter's classmates might say she's the one who talks to herself all the time and flaps her hands," says Roy Richard Grinker, an anthropologist at George Washington University and father of Isabel, 15. "But if you ask these kids in 2006 about Isabel, they say she's the one who plays the cello and who's smart about animals." Inspired by his daughter, Grinker explored autism in different cultures for his book "Unstrange Minds: Remapping the World of Autism" (Basic Books, 2007). "The more peers of the same age group understand about autism, the more likely they are to be kind, caring and integrate them into community life."

Twenty years ago, that kind of acceptance was inconceivable. Autism was considered rare and few physicians understood it or were able to help. The disorder was first identified by Leo Kanner of Johns Hopkins in 1943. About the same time a German scientist, Hans Asperger, described a less severe form of the condition. But with the ascendancy of psychoanalysis in the postwar years, the predominant view was that autism was a psychological disorder caused by a lack of love from "refrigerator mothers," a term introduced by the controversial psychologist Bruno Bettelheim. In the 1970s, parents started pushing back against this theory and encouraging researchers to look for neurological causes. It wasn't until 1980 that autism became an official clinical diagnosis, separate from childhood schizophrenia or retardation. Since that time, as scientists have learned more, they have broadened the diagnosis to include a spectrum of disabilities. Now, they are re-evaluting it even further, considering the idea that there may be multiple "autisms."

As knowledge about autism spread in the 1990s, families began to get more accurate diagnoses for children who might in the past have been labeled mentally retarded or emotionally disturbed, and the number of cases skyrocketed. Because of the Internet and extensive networking, parents around the country found allies and became powerful and articulate advocates. Even longtime autism researchers say families have really led the way. "Beyond raising awareness," says Dr. Thomas Insel, director of the National Institute of Mental Health, "families have become the real experts on this disorder. They have to figure out how to cope with a child who becomes explosive, disruptive, who could have a meltdown at any moment. They become highly skilled at knowing what helps."

Autism has set all these families on a unique journey and, while the road ahead is still unclear, they cherish small triumphs along the way. Grinker has a Ph.D. from Harvard and, in his community, many parents dream of sending their children to the Ivy League. He and his wife, Joyce, a psychiatrist, know that Isabel will never join them. But raising Isabel has its own rewards. Isabel's sister, Olivia, 13, is "like a third parent," says Grinker. The family judges Isabel not by the standards of others but by how far she has come. "When Isabel achieves something, I feel like we're a team, like we all did it, and I feel incredibly rewarded," he says. For now, that is enough.


Odd reading what the parents say and thinking, "wow, that sounds just like Sage", or "Hmm, I had that same thought yesterday, or a few mins ago."
"Unstrange Minds: Remapping the World of Autism" (Basic Books, 2007). YEP! I'm gettin that!

To advance the cause of research, radio host Don Imus joined in and pressured Barton on the air, calling the congressman, among other things, "a lying, fat little skunk from Texas."


I'd like to find out WHY in the world this congressman is denying the bill. If someone can find me info bout that, I'd love to know.



Challenging Autism
NEWSWEEK's Barbara Kantrowitz hosted a Live Talk on the challenges of reaching adulthood with autism on Wednesday, Nov. 22.

Newsweek

Nov. 27, 2006 issue - Autism is now estimated to affect as many as 500,000 Americans under 21, most male. Autism strikes in childhood, but as thousands of families have learned, autism is not simply a childhood disorder. Two decades into the surge of diagnoses that has made autism a major public-health issue, a generation of teenagers and young adults is facing a new crisis: what happens next? NEWSWEEK Senior Editor Barbara Kantrowitz, the author of this week's cover story on autism, took your questions on the future of autism research, and what role politics will play in that, on Wednesday, Nov. 22.

Barbara Kantrowitz: Hi,
I'm Barbara Kantrowitz, co-author of this week's cover story on growing up with autism. I'm pleased that we've received so many great questions and I look forward to discussing this important topic with all of you.

_______________________

Berkeley, CA: Could the rise in autism diagnosis be closely related to the increasing average paternal age as well as more problems being diagnosed as austistic spectrum?

Barbara Kantrowitz: Right now, no one knows the answer to your first question. Epidemiologists are still working on understanding the true extent of the disorder. The statistics we have right now are the most accurate we've had, but more studies are ongoing into the many factors that may cause autism, perhaps including advanced paternal age. As for the relationship between extending the spectrum to include a range of disorders, that certainly does affect the increase in diagnoses.

_______________________

Red Bank, NJ: What can we the public do to help these families?

Barbara Kantrowitz: Many parents say they wish more people would take the time to learn about autism. One father told me that it was really helpful to know that his daughter's classmates did not see her simply as strange but rather as a person with autism. Once they understand who she is, they can begin to appreciate her strengths.
For more information, I would suggest the National Institute of Mental Health website as well as web sites of the major autism advocacy groups mentioned in our story. If learning about the disorder inspires you to do more, then you could contact one of these groups to see how you might help.
_______________________

Blue Bell, PA: Is autism being found in certain areas of the country more than others (East and West coast, urban vs. suburban, etc.) and to what extent are possible environmental impacts being looked at by researchers?

Barbara Kantrowitz: The Centers for Disease Control is currently completing a national study that will answer some of these questions. Researchers are studying the prevalence of autism at 19 locations around the country. The report, scheduled for release in February, will give a good idea of whether certain parts of the country are more affected than others.
As for environmental factors, many researchers are looking into this question.
_______________________

Goose Creek, SC: Adults with autism need more housing options, such as private group homes and assistance for those who might be able to live semi-independently. Is any Federal attention being paid to this growing need?

Barbara Kantrowitz: The autism advocacy groups we spoke to said they hope that future federal legislation will address this need. In the meantime, state and local agencies are responding. Private groups -- many of them started by parents -- are also trying to help.

_______________________

Metuchen, NJ: One of the most insightful questions anyone ever asked me about my son Will who has autism: "Is he happy?"

Therefore my question is: How do we balance putting your child in a regular school setting because it's the best place for them to learn to function with typical kids, and them having a miserable school experience. Do I resign myself to the prospect of 12 miserable years because that's the best therapy available? Or do I put him in a school with other autistic kids where he would likely be happier and lose the opportunity to learn from typical kids?

Barbara Kantrowitz: This is a really tough question and impossible for me to answer. I can only say that you are not alone in your dilemma. As I mentioned earlier, I think other parents facing the same situation can be a great source of support. I would urge you to make contact with local autism advocacy groups and see if you can get some guidance from others who have been through this. Good luck!

_______________________

Burlington, VT: There seems to be no oversight on the various therapies people are undertaking for autism. If chelation is as dangerous as the FDA has claimed why is it's popularity growing? It still seems as if autism families are having to struggle not only with autism but the half hearted "help" of the medical institutions. It leaves families vulnerable to a lot of claims of help not covered by insurance programs.

Barbara Kantrowitz: You're right and I think this is a serious issue. Families who are desperate for help are ineed vulnerable to claims of unproven theories. Since there is no real oversight at the moment and research into treatment is ongoing, parents have to be their own investigators and advocates. It's an extremely difficult situation.

_______________________

Spring Grove, PA: I work with austic children. Why is it that there more boys than girls? Also why doesn't anyone mention that 80% are mentally retarded? Every article I read does not mention mental retardation. That is a big part of it. Hopefully someday we will find a cure or at least a cause.

Barbara Kantrowitz: First of all, I would like to commend you for choosing to help these children.Your work is valuable and important
To answer your questions,no one really know why autism affects more boys than girls although a British researcher named Simon Baron Cohen thinks autism may be in essence an expression of what could be called "extreme maleness." Work on this question is ongoing. Your question about mental retardation is an important one and we did try to suggest in the story that this is one reason why many adults with autism have trouble living independently.

_______________________

Ventura, CA: What is the life expectancy of an individual with autism?

Barbara Kantrowitz: Individuals with autism can be expected to have a normal life span unless, of course, they have other disabilities that would limit their life expectancy.

_______________________

Omaha, NE: Thank you for your story Barbara. Do you think it is possible that you missed the juicier story regarding autism, namely why have rates increased so dramatically? In your story Dr. Insel of NIH makes it sound like he had great difficulty finding an autistic person in the mid- 1980's.

Where are all the autistic people in their 40's and 50's?

Barbara Kantrowitz: Your question about adults with autism is a great one and we asked it of many researchers. They believe the adults are out there, but have been misdiagnosed when they were younger because there was so little understanding of the nature of autism. Now that we know more, they and their families are gaining a better understanding of the nature of their disability. Of course, no one knows exactly how many adults with autism are around. It's a lot easier to count kids who are currently in school and easy to find. I think that everyone agrees that we now have the most accurate statistics on children with autism that we've ever had and we'll do even better in the future.
Interestingly, I've received many emails from adults with autism as a result of this story so I know they are indeed around!

_______________________


Los Angeles, CA: What is the difference between Autism, High-Functioning Autism, Asperger Syndrome and Pervasive Development Disorder? Or is it just in the eye of the diagnoser?

Barbara Kantrowitz: These are all different disorders on the autism spectrum. All are characterized by three basic issues: language problems, repetitive behaviors and difficulty with social interaction. People on the high-functioning end of the spectrum, particularly those with Asperger syndrome, have the best chance of establishing an independent life. I understand why you would question diagnosis, but you should understand that these definitions are relatively new and it takes a while for the latest information to filter down to doctors around the country.

_______________________

Ocean City, NJ: Who is best to contact to make sure the US Seante knows we support the Combating Autism Act? Where can we get more info about it? How is it best to educate our childrens' classmates about Autism so that they can be more accepting and tolerant?

Barbara Kantrowitz: If you go to the webites of your senators and your local representative in Congress, you will usually find their email addresses. For more information, I suggest the websites of the National Institute of Mental Health (type autism in the search section) and the various autism advocacy groups we mention in the story. There are also two books mentioned in the story that I found helpful -- by Chantal Sicile-Kira and Roy Richard Grinker (that book is coming out in a couple of months but I had an early copy). As for educating your children's classmates, I think that might be an issue to take up with people at school such as teachers or counselors.

_______________________

Las Vegas, NV: I know that some families have more than one autistic child. Is there any indication that autistic adults will have autistic children?

Barbara Kantrowitz: There is evidence of a genetic link in autism but we're not really sure how it works. That's something that researchers are currently trying to understand.

_______________________

Portland, OR: My autistic son will not stop talking about the same topics: animated movies and animals. How can I redirect him to be more socially appropriate?

Barbara Kantrowitz: Many families we spoke with say classes in social skills helped although this might not completely resolve the problem. I would suggest that you try and find a branch of one of the national autism advocacy groups in your area to find out how you can connect with other parents and learn from their experiences.
_______________________

Barbara Kantrowitz: I want to thank all who participated for your excellent questions. Working on this story has given us at Newsweek a deep appreciation of the special challenges facing parents of children with autism. We admire and respect their efforts and will continue to follow this story in future issues of the magazine because we feel it is a significant public health problem.


Reading this article I find that there are way more questions then there are answers. It's a tad bit frustrating. I gave up worring about the cause a year or so after Sage was diagnosed. The cause didn't matter to me anymore, it happend, it's done, move on. The cure? I don't think this can be cured anymore than down's syndrome. My son is who he is, but what I'd really want most of all then to know the cause or cure, is to educate those around me. My family, friends, my community.

I want to be able to take my son out shopping and if he screams out loud "I want a hot dog, Pleeeeease" (which is actually a wonderful thing that he asked for it) or if he starts laughing loud, or wets himself (yes, it's happend before) and not have people staring as if I have an unrully child. I've thought of screaming at them, I've thought about handing out cards, I thought of telling them nicely "My son is autistic." (that part I have done) but they just look at me and I can see their faces go through a line of thinking "Oh, the kid must be retarded" or, "She's just a bad mother" or maybe I'm just projecting, I dunno. Still, it'd be nice to let people know.

I've done alot of reading on the net about Autism and through people, and now I'm going to start getting books. I guess this has become my little obsession now. Me posting all this is now for myself as it is for anyone who will read it.


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Last edited by Erilyn Cureheart on February 20th, 2007, 8:54 pm, edited 2 times in total.
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Some Facts

Postby Erilyn Cureheart » November 30th, 2006, 5:28 pm

Possible Causes

* Genetics: Few theories maintain that a single gene causes autism. Multiple genes, possibly ranging in number from 5 to 15, or gene networks, are now thought responsible.

* Environmental factors: Chemicals such as pesticides or PCBs, as well as infections, may play a role.

* Gene- environment interaction: Genetic variations - the MET gene, for instance-could increase susceptibility to environmental factors.

* Hormone imbalance: About four times as many boys as girls have autism, leading some experts to believe that hormone imbalances during development could play a role in determining who develops the disorder.


Warning Signs


* Does not babble or coo by 12 mos.
* Does not gesture (point, wave, grasp) by 12 mos.
* Poor eye contact
* Delayed in learning speech
* Does not say two-word phrases on his or her own by 24 mos.
* Doesn't know how to play with toys
* Excessively lines up toys or objects
* Doesn't respond to name

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Postby Wenceslas » November 30th, 2006, 6:21 pm

I also noticed that more couples have children in their 30's.

It's also known that older couples (30 is old...har har har!) bake children with more medical problems.
Perhaps that's another reason.
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Postby Erilyn Cureheart » November 30th, 2006, 7:37 pm

There are many posibilites, it's narrowing them down that's seems to be the hard part.
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Postby Pulgrey » November 30th, 2006, 8:33 pm

also bear in mind many of the various forms of autism are relativly recently discovered/diagnosed. Part of the rise is sinmply that we didnt know it existed until recently.
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Postby Astarin ShadowPrince » December 1st, 2006, 7:02 am

I'll be honest, with all of the new forms of autism being discovered, looking back at my childhood, I am autistic. Sorry, medical science is very off base on several of them, what was known 15 years ago as being a kid, is being autistic now.

That being said, I have an autistic son, and an autistic nephew. Both are legitimately autistic, As Loon said, causes are unknown. Thankfully my son is "high functioning" Although his school has brought him leaps and bounds into a "normal" life. So, he's a year behind other kids his age (in school). He doesn't talk very well... and he has a temper. We still love him.
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Postby Ksstgermain » December 1st, 2006, 4:32 pm

My oldest son has autism and he is a higher functioning form. The services in Western Canada or in Alberta are beyond amazing. He can get up to the age of 18 probably 50k a year in services so far. OT grp OT, Speech grp speech, and many more things that the wife knows well... he also gets a one on one school aid everyday in school. Since he was diagnosed early all these services has helped greatly and perhaps when he is a bit older he wont need them anymore. My wife knows so much about autism she should teach it, god bless her for her research and going to conferences and talking to hundreds of mothers from around the world about it. Where we noticed his change was after he got his menegitis shot at age one when there was a small outbreak in Edmonton. It is determined (not fact yet as there is a class action suite and studies still being done) that what the company of the vaccine used had changed many childrens behaviour. If you need or want to know more send me a tell and my wife would gladly talk to anyone about this.
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Postby Erilyn Cureheart » December 3rd, 2006, 12:17 am

I have a suspision that it was a vaccination that altered my son as well. I'm not about to go off on a doc about it, Im not gunna get piss raving mad about it either. It happend and Sage is now Sage and I love him. /shrug
I am still learning about Autism everyday through my son. I reeeeeally hope we can do something about passing this bill.

The House bill authorizes money for research into many questions, including whether environmental factors may trigger autism. One point of contention: the Senate bill mandated a specific amount of money for the NIH to research the role environmental factors might play in causing autism.


I have 15 years before they kick my son out of all the programs and just 5 years ago my cousin Frank who had Downs Syndrome died soon after they took him out of school and all his programs.
I doubt that that will happen with my son, cause he, his sister and I have lives outside of the schools. The school/programs was all my cousin had.
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Postby Giadin » December 6th, 2006, 7:16 pm

For the past 12 years running now, my schools host events through out the year to raise money for St Jude and Make a Wish foundation...

    12 years for Make a Wish we have raised 29, 600
    07 years for St. Jude we have raised 18,700


JoJo becasue of this post, I now will have a new Cause to Champion
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Postby Erilyn Cureheart » December 6th, 2006, 11:47 pm

*HUGS DOYLE!!!!*
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Postby Erilyn Cureheart » December 11th, 2006, 2:50 am

'Autism and Me'

Nov. 24: Rory Hoy, 18, is autistic. He discovered filmaking a few years ago and has made 28 short movies. In his latest - 'Autism and Me' - Rory lets us into his world and tells his story in a quirky, offbeat style.

http://broadcast.organicframework.com/index.php?p=423,88897,R&rating=5&comment=&cmd=Rate

Heehehe he has a sence of humor. I hope to see Sage like this someday. I'd even love it if he collects things. Though me boy wouldn't get away with calling me a witch, yaa um... no. hehehe
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Postby franken » December 25th, 2006, 9:40 am

My nephew is at a point the school he attends is going to kick him out...

My brother is at his wits end my family is also frusterated beyond belief..

What to do.. What to do.. He is 11 year's old and in the third grade...

stutters... fires off randomly with verbal assaults and has firey red hair...

I feel so bad for him and try and help as much as I can..hes such a good

kid around me but such a little shit around his own dad....What gives>? I

have read a few books on the subject and can't find any hope for him..

Drugs didnt help.. Discipline doesnt help... Teacher's dont want to give

him the time of day.. His reading skill is at max second grade level and

his math is third tops....He continualy fights with kids at school , and im

sure it is because of his lack of normal intelligence and his red hair doesnt

help much either... The kids tend to pick on him// I have raised my

daughter by myself for the last 7 years she is a straight B student a few

a's and a few b's.. Im considering takin him away from my brother for a

little while but omg I dont know if I could deal with it 24/7
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Postby Erilyn Cureheart » December 26th, 2006, 10:24 pm

You said before your Nephew is autistic, I believe... well, what I found that works for my son is a certain phrase. "Do you want to go nigh nighs!?!" (meaning, does he want to take a nap) I have talked to teachers and even the bus driver who takes him home, that say the phrase works. The bus driver was at her wits end a few months ago, not knowing how to handle Sage. She asked me what I do or what I say to get him to do what he needs to do while in the bus. She said that all the children in her bus have phrases that they respond to. For example "If your good you'll get candy" and they immediately calm down and do what they are told. I'm not saying bribery is good or threatening the kid with nap time is all that great, but it works. For the NEEDED cooperation that you can get from these kids, whats a little bribery?
You have to pick your arguments. If he is doing something but not hurting anyone else, let em do it. Example: Spinning around, flapping paper in his hand, let em do it.
With these kids you have to get them young before the bad behaviors become bad habits. :(
Sage used to bite, used to scream, used to hit, and once in a great while he will but I make certain to stop him dead in his tracks when he does. Being firm, being consistent (consistent isn't my thing but DAMN do I try) are things that they need.
I'm not preachin, I'm not trying to tell you want you have to do, I'm just trying to tell you what I know, pass on some knowledge.
God knows if you take this child into your home it will NOT be easy. Patience, understanding and love are going to be needed above all else. These children need healthy parents, don't forget to take care of yourself too.

/shrug.. dunno what else to say... if I think of anything else I'll post later.
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Postby franken » December 27th, 2006, 5:20 am

ty very much i'll ask sister in law if she has one or fuck it ill make one if its not too late... he's great with me its just when he gets in school and other public areas...
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Episodes...

Postby Erilyn Cureheart » January 4th, 2007, 3:12 pm

I call them episodes, Tracy calls them behaviors, but to us they both mean the same thing.
Screaming, yelling, violent acts like kicking, punching, pinching, scratching, and such.

Being Naughty...
Like every child, they will be naughty and test their boundaries/limits with you, like picking on their sibling, or touching when they shouldn't things like that. With that you can give them the eye! You know, pierce them with your gaze! hehehe Or the firm voice that'd make a child think twice before ever doing something bad again.
Spanking on the other hand doesn't work with me. I find telling Sage that he will take a nap, to be much more effective! Though I fear one day CPS will come over to see if I am torturing my child.
"No Mr. CPS man, I am not hurting my child, I just put him down for a nap."
heh.. ya, you'd be surprised how well it works. Spanking really has no place in my Son's life and it really shouldn't for any child who has such challenges.

Having an Episode...
Once in a great while my Son will have these episodes, other people see them as intense tantrums. Before I even tackle the situation I deal with myself. Sage won't get any better if I am upset myself. Infact it escalates the problem.

-I first restrain him the best I can. (Hold him so he doesn't hurt himself, me, or someone else.

-Take a deep breath, relax. This cannot take a few minutes, I don't have that sort of leisure, so I take a few seconds while Sage's is screaming his head off in my arms.

-Make eye contact and talk to him. Change the subject, "Oh look at that car."

-Massage his back and head. Help him to relax.

I've had to stop what I was doing at the time and do this. I've ended up sitting in the middle of a sidewalk outside a theatre helping Sage to calm down, because he couldn't watch a movie with the family. Meh, people were complaining that he was moving too much and kicking their seat. It was another attempt to see how he'd do in that situation. In my opinion, the lady who complained failed. hehehe

This is not me telling people what to do, it's me telling people what works for me and Sage. Ya, that’s mah lil disclaimer.




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Postby Belannah » February 1st, 2007, 6:45 am

I know that life my little girl is midly autistic....but she will cover her ears or bury them in to my coat among other thngs and we just trasfered school and are having another IEP fight for her to get her needs meet

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CVRC Central Valley Regional Center...

Postby Erilyn Cureheart » February 20th, 2007, 8:39 pm

After my son was diagnosed by a Doctor, this is where they refered me to.



Regional centers are nonprofit private corporations that contract with the Department of Developmental Services to provide or coordinate services and supports for individuals with developmental disabilities. They have offices throughout California to provide a local resource to help find and access the many services available to individuals and their families.


Services Available From Regional Centers


Regional centers help coordinate the services and supports that are needed because of a developmental disability. This is called case management or service coordination. A case manager or service coordinator will be assigned to help develop a plan for services, tell you where services are available, and help you get the services. The following are some of the services and supports provided by the regional centers:

* Information and referral
* Assessment and diagnosis
* Counseling
* Lifelong individualized planning and service coordination
* Purchase of necessary services included in the individual program plan
* Resource development
* Outreach
* Assistance in finding and using community and other resources
* Advocacy for the protection of legal, civil and service rights
* Early intervention services for at risk infants and their families
* Genetic counseling
* Family support
* Planning, placement, and monitoring for 24-hour out-of-home care
* Training and educational opportunities for individuals and families
* Community education about developmental disabilities



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A Grandmothers perspective...

Postby Erilyn Cureheart » February 20th, 2007, 9:21 pm

I found this story and thought I'd share.

A GRANDMOTHER’S PERSPECTIVE ON AUTISM

During the acknowledgement of parents of special needs children, my daughter Cheryl suggested that I write from a Mom Mom point of view. I had to think because the feelings I felt really don’t have words that can accurately describe how I felt.

When Jonathan was 1 year, my husband and I thought something was wrong, but didn’t want to say anything, thinking he was just a slow starter. As he became 1-1/2 we were very concerned because he didn’t seem to hear.. If you called him, or came up in back of him and made a loud noise, he wouldn’t even flinch, but if you played one of his videos or Sesame Street he would come running. This left us with a very large question mark.

Hearing tests showed he could hear. Fortunately, our daughter is not the "queen of de-Nile"…..she went immediately into full battle mode for her son... . Cheryl went for a full evaluation on Jonathan. I was there when she got back and her face told it all. It was not good. Jonathan was autistic. My husband and I knew very little about autism, but have learned more than we every wanted to know.

Cheryl wanted to be a "stay at home mother", but instead she had to take her son to school when he was 2 years old. I went with her and to say my heart broke would be the reason I don’t think there are words that describe how I felt.

When you have children, you never even think of the time when you will not only worry about your children, but their children as well. Sort of like a double barreled deal. The worry doesn’t stop. Each stage of development brings its own problems and worries. I think the only thing that has really helped me is that we dedicated Jonathan to God and sometimes I have to stop and remind myself that he is a very special child of God and he is watched over.

Asking why in this world is a waste of time. When someone asked Cheryl why you, her answer was "well, why not me?" It can happen to anyone. It changes the whole complexion of child rearing. I can use some of my child rearing skills on Jonathan, but must rely on Cheryl to tell me the best way to deal with him. Fortunately, Cheryl and I have a very open relationship and communicate well on the best approach for Jonathan.

Jonathan is in a very loving environment at school and home. He is surrounded with people who love and do the best for him. Like my daughter said, we have to get into his world, he can’t get into ours.

I can say I understand what my daughter goes thru when I have Jonathan on the weekends, but this would not be true. She lives with it constantly. Not only the physical strain, but the mental stress of worry is always present. Every achievement is a gift, when he regresses you try not to get depressed and start over. Whatever works. The disruption in family life is astronomical. All the things you thought you were going to do with your grandson have to be readjusted. Knowing how it has affected us, the affect on our daughter is so much greater.

When your children are growing up, you can fix a lot of things for them. This is one thing we can’t fix. The feeling of helplessness is tremendous. The best thing is to "be there" and listen. Never underestimate the power of communication. Sometimes Cheryl just needs to "vent" to someone who can understand her pain.

Now for a more uplifting word – We find a sense of humor in some of the things Jonathan does. Our philosophy is you can laugh or cry. Laughing is much more fun. A sense of humor can make things more bearable.

I consider Jonathan a very special child because he has to depend so much on how we treat him. That is a very big responsibility not to be taken lightly. Saying this, it still does not help after an all day session of trying to keep up with him. This is why parents of special needs children need help. No matter how much the parents love them, they are still human and have their "breaking points". They have very little privacy and no freedom. We all need to "feed our spirit" at times, and to do this we need space and quite. An essential part of life.

Sometimes it takes a tragedy in order to focus on those who need our help and understanding. No amount of words could ever describe the strain and difficulties of caring for a special needs child. It is non-stop.

Grandmother in training

Marcia Kelley, aka "MamaBear"
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Shocking treatment...

Postby Erilyn Cureheart » February 25th, 2007, 1:40 am

Alternative medicine I believe, at its worse...

http://abcnews.go.com/Video/playerIndex?id=2889853

My son has severe Autisim... not severe behaviors because through love and patience and firmness, he's learned that those severe behaviors are not acceptable. This treatment is uncalled for, these children, any special child are our oppertunity to show ourselves what we're made of. They, these children, have the potential to bring the best out of us.

What kind of people are we when we do this to these children who depend upon us to do the right thing. What does that say about our humanity that we shock these special gifts.

God help these people who think that hurting these precious children is a good thing. :(

Why can't they see that our humanity is being tested? I see it clearly and I feel Sage has made a better person out of me. Why can't they see this?
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