Wednesday, April 02, 2008
Living with autism
Are you or is someone you love living with autism? We want to hear your story. How does this condition affect your life, as well your family's? Share what life is like on a typical day. Turn on your camera and record video of yourself speaking about your experiences, and give us a glimpse of your daily routine. Have you found any unexpected silver linings? Send photos and videos that help tell the story of what it's like to have autism.
Living with Autism
Jenny McCarthy: My son's recovery from autism
Special to CNN
Editor's note: Jenny McCarthy and Jim Carrey are actors and parents actively involved in autism-related causes. McCarthy is the author of the book "Louder Than Words: A Mother's Journey in Healing Autism."
Actress Jenny McCarthy believes that vaccines could have contributed to her son's autism.
(CNN) -- In light of the recent Hannah Poling decision, in which the federal court conceded that vaccines could have contributed to her autism, we think the tide is finally turning in the direction of parents like us who have been shouting concerns from our rooftops for years.
Autism is a debilitating disorder, which according to the Centers for Disease Control and Prevention, is suffered by 1 in 150 kids, making it more common than childhood cancer, diabetes and AIDS combined.
Recently, England and Ireland reported that autism is affecting one in 58 individuals.
Is it any wonder that autism has become many new parents' No. 1 fear?
We've met some of the most amazing moms and dads who are forging their own path to prevention and recovery. When our son, Evan, was diagnosed with autism we were lucky enough to benefit from their knowledge and experience. Evan has been healed to a great extent by many breakthroughs that, while perhaps not scientifically proven, have definitely helped Evan and many other children who are recovering from autism.There are some who wonder what we mean when we say "recovering" from autism. They confuse the word recover with cure. While you may not be able to cure an injury caused in a terrible car accident, you can recover; you can regain many skills that you once lost. In the case of autism, we think there are treatments that often bring about such healing, so that the observable symptoms of the condition no longer exist. Even though we may no longer see any symptoms of autism, we can't say a child is "cured" because we do not know what they would have been like had they never been injured.
We believe what helped Evan recover was starting a gluten-free, casein-free diet, vitamin supplementation, detox of metals, and anti-fungals for yeast overgrowth that plagued his intestines. Once Evan's neurological function was recovered through these medical treatments, speech therapy and applied behavior analysis helped him quickly learn the skills he could not learn while he was frozen in autism. After we implemented these therapies for one year, the state re-evaluated Evan for further services. They spent five minutes with Evan and said, "What happened? We've never seen a recovery like this."
Evan is now 5 years old and what might surprise a lot of you is that we've never been contacted by a single member of the CDC, the American Academy of Pediatrics, or any other health authority to evaluate and understand how Evan recovered from autism. When Evan meets doctors and neurologists, to this day they tell us he was misdiagnosed -- that he never had autism to begin with. It's as if they are wired to believe that children can't recover from autism. 
Watch CDC chief on vaccines, autism »
So where's the cavalry? Where are all the doctors beating down our door to take a closer look at Evan? We think we know why they haven't arrived. Most of the parents we've met who have recovered their child from autism as we did (and we have met many) blame vaccines for their child's autism.
We think our health authorities don't want to open this can of worms, so they don't even look or listen. While there is strong debate on this topic, many parents of recovered children will tell you they didn't treat their child for autism; they treated them for vaccine injury. Read about latest fight over vaccines and autism
Many people aren't aware that in the 1980s our children received only 10 vaccines by age 5, whereas today they are given 36 immunizations, most of them by age 2. With billions of pharmaceutical dollars, could it be possible that the vaccine program is becoming more of a profit engine then a means of prevention?
We believe autism is an environmental illness. Vaccines are not the only environmental trigger, but we do think they play a major role. If we are going to solve this problem and finally start to reverse the rate of autism, we need to consider changing the vaccine schedule, reducing the number of shots given and removing certain ingredients that could be toxic to some children.
We take into account that some children have reactions to medicines like penicillin, for example, yet when it comes to vaccines we are operating as if our kids have a universal tolerance for them. We are acting like ONE SIZE FITS ALL. That is, at the very least, a huge improbability.
Even if the CDC is not convinced of a link between vaccines and autism, changing the vaccine schedule should be seriously considered as a precautionary measure. (If you would like to see some ideas for alternative schedules, check out http://generationrescue.org.)
We wish to state, very clearly, that we are not against all vaccines, but we do believe there is strong evidence to suggest that some of the ingredients may be hazardous and that our children are being given too many, too soon!
The opinions expressed in this commentary are solely those of the writers.Autistic children linked to same sperm donor
NEW YORK (CNN) -- He's only 5½ years old, and yet he's practically memorized the entire New York subway grid. He reads at the fourth-grade level, plays two-handed piano compositions and is better versed than most adults about the Fibonacci code, a complex mathematics sequence.
Dylan loves Italian music and draws pictures that artist Jackson Pollock would be proud of.
He also happens to be autistic.
Gwenyth Jackaway, Dylan's mother, is a professor at New York's Fordham University. She's single but had always wanted to have a child. So she contacted one of the largest sperm donor banks in the country.
The sperm bank doesn't reveal the identities of donors but allows people to choose based on the traits they'd like their child to have. Jackaway decided on "Donor X" because he appeared philosophical and intelligent on paper. He liked music, loved to travel and had a high IQ and a degree in economics.
What she couldn't know then is that her son would have autism. So she started to wonder whether Donor X might carry a gene that could have contributed.
The cause or causes of autism are not known and are hotly debated. Most experts believe that genetics are a component, making a child predisposed to autism or responsive to an environmental trigger.
"It's a combination of being genetically vulnerable and then having some kind of social or toxicant exposure that tips you over," according to Dr. Gary Goldstein of the Kennedy Krieger Institute.
Researchers have found some genetic areas associated with autism, but it could take years before the gene or genes that cause autism or contribute to it will be determined.
Until then, Geri Dawson, chief science officer for the Manhattan-based advocacy group Autism Speaks, says there's no way to screen for those genes and prevent them from being passed to a child.
"We wouldn't be able to screen a donor for autism because we don't yet know the specific genes that are contributing to autism," Dawson said. "But there is a lot of research going on, and I would say in the next five to 10 years, we will have identified between five and 10 genes that we know raise the risk for autism."
Once the autism gene or genes have been identified, it would theoretically be possible to screen for those genes, according to Dawson.
Jackaway says she went into a period of mourning when Dylan's autism was diagnosed at age 2.
"When you're handed a diagnosis of some sort of developmental disorder, you have to let go of the child you thought you were going to have," Jackaway said. "There's a sense of loss of the child, a grieving process. There's denial, there's rage, and then there's the tremendous sadness, and hopefully you get to a place of accepting."
Jackaway says she had to accept that "I don't have that child I thought I was going to have. But I have this child instead, who's right here in front of me."
Through a Web site called Donor Sibling Registry, she reached out to other women who used Donor X. She found six families who had used the same donor.
Two years ago, she visited Theresa Pergola in the New York area; she had given birth to triplets using sperm from Donor X. Just minutes into their meeting, Jackaway noticed Pergola's son, Joseph, 2, exhibiting some of the same behavior as her son.
"He was walking on his toes; he was flapping his hands. There seemed to be eye contact issues," recalled Jackaway, who immediately suggested screening Joseph for autism.
"She told me that she saw characteristics of autism, and it was very upsetting to me at that time," Pergola said. "I didn't know what to expect from that point on. I know I was scared, and she was there to let me know that it was going to be OK."
Pergola says she was afraid because she had an image of autism in her head and believed her son would be "in the corner and rocking and not talking."
She says Jackaway reassured her that wouldn't be the case.
One month later, a test confirmed what Pergola already knew: Joseph was autistic. The diagnosis brought her to tears, and now these two women whose sons share a father were immediately connected by another bond: autism.
"She was terribly upset," Jackaway remembered. "That moment is a terribly frightening moment. You get handed a diagnosis, and you get handed an entirely new future."
In six families Jackaway contacted that had used Donor X, three of the children are autistic, and one is showing signs of autism.
But would Jackaway be happier today if there had been a way to screen Donor X for an autism gene?
"I've done a lot of thinking about this, and to say yes to that is to say that I wish Dylan isn't Dylan," Jackaway said. "I love my son and everything about him, and that means loving his autism also. Loving your children means loving everything about them. Our children don't have autism; they are autistic. It's part of who they are."
Pergola says she's still uncertain about an autism screening process, if and when it becomes available.
"It can go either way. On the one hand, it could be helpful so that people could make choices about what risks they want to take," Pergola said. "On the other hand, it's like, what else are they going to screen for, you know? Are they going to screen for certain personality traits? It's hard to say. It's really hard to say."
The families don't blame the sperm bank. Since the discovery of autism in the families that used Donor X, his samples have been removed and are no longer available for reproduction.Monday, February 11, 2008
Comments regarding previous post...
My name is Michelle Guppy, and I facilitate an online network for parents and professionals in Texas. To join that group to learn more about autism and the educational issues, you can join by going to www.TexasAutismAdvocacy.org. Special Education in Texas is an issue that is not well defined in a brief article. I welcome any questions about the autism supplement and what it means for students with autism.
MichelleMGuppy@TexasAutismAdvocacy.org
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Most districts try very hard to do the right thing for Au kiddos and are very high functioning. As for having a " mandate " for social skills we shall see , the emphasis right now and in the near future is for TAKS test taking and it's success at all levels w/wo disabilities. TAKS and the NCLB is already out of control. And that is an unfunded mandate.
The real krux of the matter is that these AU students must pass TAKS to graduate, and if they are not on a state recommmended plan they will have a tough time getting into college, despite their grades. AU kiddos are usually do poorly on standardized tests.
So while an ABA is fine and districts will do it if told to do so.The emphasis will still be TAKS testing and an ABA would only take away from an already rigorous TAKS preperation .
Thus, this article should have been written about NCLB and how it is not leaving children behind but pushing Special Education children into the cracks of an abyss that no one has thought of , or the mess of a generation of Special Education children who have been put into the TAKS accountability meatgrinder.
Good luck to the autistic parents and especially their kids, but they are unaware of what is really going on.
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The key is awareness. My own parents were aware of my own rights for my own disabilities.
But we met other parents who hadn't the faintest idea of what they were getting into--instead prefering to leave things to 'the experts'.
BIG MISTAKE!
It is how some of my former classmates ended up as burger flippers despite being able to go on and successfully perform college level work. They were 'disabled'!
Texas Revamps Strategies for Autistic Students
REVAMPED LAWS
Hope for autistic students
Grappling with one of special education's fastest-growing areas, legislators make changes that spell out strategies
Copyright 2008 Houston Chronicle
Parents of Texas' roughly 20,000 autistic students hope that recent changes to state law will resolve one of special education's more contentious areas by clearly spelling out considerations that must be made for their children.
The revamped "autism supplement" defines 11 areas — including specific teaching strategies and social skill supports — that parents and educators must discuss before they decide on an autistic child's education plan.
It replaces an older, very brief list that some advocates say school districts simply skirted over. Education officials, on the other hand, worry that families may view the new guidelines as mandates, rather than considerations.
"Everybody's on a learning curve," said Cynthia Buechler, director of the National Educators Law Institute and a partner at an Austin law firm that specializes in education issues. "My biggest concern is that it'll be construed that there's an entitlement to these services."
Autism, a complex neurobiological disorder, is one of the fastest-growing categories in special education. While it affects children in varying degrees, those on the spectrum often have trouble communicating and socializing.
This is a major area of concern for school districts, which have seen the time and resources that they spend working with autistic children grow exponentially in recent years. Officials in the Cypress-Fairbanks district, for example, say they have about 750 special-education students classified as autistic, compared with five in 1990.
The Houston Independent School District reported 656 students last year with the primary diagnosis of autism. That's up from 557 in 2002-03.
Training for the changes
Under existing state and federal law, school districts are already required to provide any service that a special-education student needs, including all of those that are now specifically mentioned in the supplement."We're not really bothered by the autism supplement," said Nadine Fidler, assistant superintendent in the Cy-Fair school district. "A lot of the things, we already do. We're just now committing it to writing "
But advocates said the supplement means school districts have to be more upfront about what the possible services are. Unsure of how these conversations will play out this year, some school districts are scrambling to train educators on the changes.
"Many school districts are grappling with how to address the changes mandated by the new commissioner's rules," said April Fox, director of special education in the La Porte district, which has 72 students affected by the change.
They're worried, for instance, that parents might see "applied behavior analysis" in the supplement and think it means their child is entitled to the popular therapy.
Considered by many parents to be one of the most successful interventions for autistic children, ABA calls for trained educators to spend up to 40 hours a week teaching behaviors by using reward and consequences. It's a costly and somewhat controversial therapy.
"This is going to be a litigated issue," Houston advocate Louis Geigerman said. "Frankly, the districts don't like ABA. While this doesn't mandate that they have to do it, it does mandate that they have to discuss it."
Many of these talks will play out this spring, as parents of special-needs children meet with their school committee for the first time since the changes took effect late last fall.
Districts weren't required to notify parents about the changes ahead of time, and they're also not required to refer to the "autism supplement" at the meeting. They just have to discuss all 11 topics specified in the document.
Because of that, advocates encourage parents to do their homework prior to their child's special-education committee meeting. Such groups, consisting of educators, parents and specialists, meet at least annually to assess a child's progress and set educational goals.
Advocates say they hope this expanded list will guide parents' conversations, letting them know they can ask to attend training workshops or ask that their children receive social-skills support.
"It gives parents a big hammer when they come in," HISD parent Cynthia Singleton said. "But if they don't know where to hit the nail, it's not going to help them."
Policymakers' job
While parents appreciate the items and examples being added to the supplement, many are quick to point out that talk is cheap. Just discussing the items won't resolve any of the long-standing problems that surround educating students with autism, they say.Legislators and policymakers have a responsibility to make sure schools have enough resources to help students with autism, they said.
"The major hindrance, even if there were 20 provisions, is the ability to implement," said Cy-Fair parent Michelle Guppy, who has a teenage son with autism. "If they don't have the funds, and the teachers don't have the training, it doesn't matter what they say."
POINTS THAT MUST BE DISCUSSED
Parents and educators must discuss each of the following 11 points before creating an Individualized Education Program for a student with autism:
• Extended educational programming, including extended-day and extended-year services
• Daily schedules with minimal unstructured time
• In-home and community-based training that helps students acquire social and behavioral skills
• Positive behavioral support strategies
• Planning for the life, work and education of children of all ages
• Parent and family training and support
• Suitable student-to-staff ratios for children during the various stages of learning
• Communication interventions
• Social skill supports
• Professional educator and staff support and training
• Teaching strategies based on research-based practices, including discrete-trial training and applied behavior analysis
Monday, January 28, 2008
Autism Changes Everything
My grandson Christian and I used to sit by the side of the road together and talk about the different vehicles as they passed. He loved to name them all—mail truck, delivery truck, garbage truck. Our home videos, now too painful to watch, show a happy little boy reveling in the new role of big brother.
A few months later, this bright, beautiful child was somehow slipping away from us. His words left him, and his playful personality gave way to frequent and intense tantrums. His potty training disappeared. He began to suffer from gastrointestinal problems and recurring infections. The sensation of sand under his feet now made a walk on the beach feel like torture. Autism had its grip on Christian, and it was taking hold of our entire family in the process.
For a while, we mourned the loss of the little boy we knew and all we hoped he would become someday. And then we got back to loving and celebrating the wonderful child he is and how much he has to offer.
My husband Bob [vice chairman of General Electric] and I simply could not fathom why so little was known about a disorder that was devastating thousands of families like ours. Where were the impassioned speeches on the floors of Congress? Why hadn’t anyone told us this could happen to our grandchild—to anyone’s child?
Some may view autism as the disease du jour, the cause of the moment. That trivializes what many are enduring. Families are literally going broke trying to provide their children with the services they deserve. Adults with autism are failing to meet their potential.
Our grief evolved into feelings of anger and, eventually, determination. We started a foundation called Autism Speaks and, working with thousands of remarkable parents, have brought this issue front and center. With the help of the United Nations, we are taking this effort global. This year, April 2 will be World Autism Awareness Day.
We’re now playing catch-up as we try to stem the tide and ultimately eradicate autism for the sake of future generations. If we continue our current trajectory, we’ll get there in my lifetime.
What Do We Know About Autism?
As a child, I learned how autism turns a world upside down. In our house, it was my little brother who was diagnosed at 3. In the search for a treatment, parents will go to any lengths. I saw that with my parents, and I see it now as a practicing physician. Much has changed in the field of autism, but the need for parents to make decisions in a bewildering terrain has hardly changed at all.
A diagnosis of autism usually rests on three distinctive symptoms: difficulty with social interaction, problems with verbal and nonverbal communication, and repetitive actions or obsessive interests. These behaviors can range from mild to disabling.
Parents may first notice that something is wrong when their child fails to babble or point by age 1 or to speak by 16 months. Some autistic children don’t smile or make eye contact. Others seem to be hearing impaired or do not know how to play with toys. There also are cases in which a child who appears to be making normal developmental progress abruptly loses language or social skills.
Is Autism an Epidemic?
Until the 1940s, there was no autism—in the sense that it was an unrecognized condition. In 1988, when Dustin Hoffman’s Rain Man brought a version of autism to life on film, many of us first heard about it—as an odd, almost-fascinating disorder which was also, apparently, rare.
Fast-forward to today. Autism is front-page news. Celebrities talk about it, Congress ponies up millions for research, and the numbers are startling: One in every 150 American kids has some form of autism, says the Centers for Disease Control. The last 15 years in particular have seen diagnoses rates soar. “It is the fastest-growing developmental disability in the U.S.,” says Dr. Andrew Zimmerman, director of medical research at the Kennedy Krieger Institute Center for Autism and Related Disorders in Baltimore.
No one really knows why the numbers are so high. But there are many theories. The most commonly accepted one centers on how we define and recognize autism. “There has been an expansion in the criteria,” explains Dr. Cecelia McCarton, the director of a school for autistic children in New York City, echoing the majority of mainstream experts.
A broader definition means that there are simply more ways to be considered autistic than in the past. At the same time, parents, teachers and doctors are paying more attention to the symptoms—which tends to lead to higher numbers of diagnoses.
But changes in how children are labeled and diagnosed alone “cannot explain the rise,” says Dr. Zimmerman. Other theories rest on maternal, obstetric or environmental factors that perhaps trigger an innate tendency. “Anything from autoimmune disorders to chemicals in the environment may be involved,” adds Zimmerman. He notes that researchers have been pursuing all of these theories to varying degrees, “but science has not yet pointed us to any concrete answers.” An important study released this month suggests that a genetic flaw that occurs around conception may sharply increase the risk that a child will develop autism.
More than perhaps any brain disorder in history, autism has ignited heated arguments among parents and professionals.
What Is the Best Treatment?
There currently is no single definitive treatment for autism. “One size fits all” does not work. But starting early does. These days, children as young as 1 are being evaluated and treated. “The sooner you start, the better off you are,” says Dr. Mc-Carton. Early intervention works, she explains, because of the malleability of the brain in very young children—that is, its ability to grow and develop when stimulated.
Today, most school-based programs rely on behavioral therapy to stimulate development. The treatment aims to reinforce appropriate behaviors while discouraging the inappropriate. Typically, a child is required to perform over and over a task that autism makes difficult—say, buttoning a shirt—with rewards such as stickers or candy for performing the task correctly. This approach, practiced in different variations and sometimes customized to the individual child, helps some autistic children make eye contact, increase spoken vocabulary and master basic life skills.
Lisa Goring of Manhasset, N.Y., got her son Andrew early-intervention services at age 2. “When we started, Andrew threw tantrums that made it impossible for us as a family to go anywhere,” recalls Goring. “At first we felt lost. But after we found a program, he learned how to speak. Once he was able to communicate, his world opened up.” Andrew made such good progress that he was able to enter mainstream kindergarten. He’s now in sixth grade. Though not at the level of his peers, Andrew functions well with one-on-one support provided by his school district.
While behavioral programs claim a scientific basis, the reality is that it is difficult to test their effectiveness or even to compare one type of behavioral treatment with another. Still, these therapies win general endorsement by most professionals and many public school districts (though insurance companies generally refuse to pay for them).
Do Vaccines Cause Autism?
Most doctors and researchers answer a clear “no” to this question. But the controversy remains alive in the media and among parent-advocacy groups.
Parents in these groups have reported a sudden and dramatic social disconnect—including loss of language—in children who previously seemed to be developing normally. The change occurred soon after the children were given the first dose of the MMR vaccine (to prevent against measles, mumps and rubella), typically at around 12-15 months. These parents adamantly believe that their children’s autism was caused by something in the MMR vaccine or in combination with other vaccines containing the mercury-based preservative thimerosal. They insist that the timing of the onset of autistic symptoms is not a coincidence.
While some physicians and scientists support the vaccine-autism link, the overwhelming majority of medical professionals and mainstream medical organizations maintain that vaccines do not cause autism. This is the position of the Institute of Medicine (IOM), National Academy of Sciences, CDC, American Academy of Pediatrics and NIH. After reviewing the research, the IOM concluded that the evidence “did not support an association between autism and the MMR vaccine.”
In fact, even autistic children who never received the MMR vaccine first show symptoms at around the same age as those who are vaccinated.
Is There Hope?
Parents of autistic children should not despair. “Many kids do very well and adapt to their situation,” says Dr. Lee Marcus, clinical director of the pioneering TEACCH program in Chapel Hill, N.C. Since the 1960s, the program—now mandated in North Carolina—has been combining behavioral and developmental therapies, with parents as co-therapists. “There can be progress and optimism about the future. Society is more accepting. Many people do a good job teaching kids with autism.”
Indeed, the road ahead for people with autism depends on the attitudes of the rest of us and our willingness to create opportunities for jobs, for education and for inclusion. “We know our son will always have challenges,” says Lisa Goring, “but we feel very fortunate that we found people who understood how to teach him. He’s different, but his friends absolutely accept him. He has a community.”
Does It Work?
Experts say that nearly 80% of autistic children are given complementary treatments, including special diets and nutritional supplements. “I know of more than 300 treatments being used by families,” says Dr. Paul Law, a pediatrician and father of an autistic child, who created the first national online database on autism. But experts caution that there is little solid scientific evidence for most treatments. Among the most popular:
Elimination diets. These generally allow no casein (found in virtually all dairy products) or gluten (found in most grain-based foods). Many parents report improvements in their children’s functioning. But some professionals say the diets will only work for children who are truly allergic. One warning: Children on restricted diets could end up with nutritional deficiencies. Always talk with your child’s doctor before starting a new regimen.
Secretin. This naturally occurring hormone controls digestion and has been prescribed for gastrointestinal conditions. In 1998, some researchers suggested that a secretin deficiency could cause autism. Hoping for a cure, some parents gave IV infusions of the hormone to their children. But after a series of trials, NIH researchers concluded that there was no evidence that secretin was effective as a treatment for autism.
Chelation therapy. This is an accepted treatment for the removal of toxic levels of lead. Some have argued that autism is caused by a buildup of heavy metals (such as mercury) in the body. No rigorous scientific studies have shown any benefit to chelation therapy. Moreover, it has been associated with serious side effects.
Thursday, January 10, 2008
Genetic mutations boost autism risk, study says
Scientists have discovered a pair of genetic mutations that markedly boost a child's risk of autism, researchers report Thursday.
The mutations — missing or duplicated snippets of DNA on chromosome 16 — may raise a child's risk of autism 100-fold, the study says. Although the genetic errors occur in just 1% of autism cases, that amounts to a lot of children.
"There are probably a million kids in this country with autism. About 10,000 of them have this mutation," says David Miller of Children's Hospital Boston, where a diagnostic test was developed and is available.
The research marks a major turning point. Scientists no longer are simply describing the many facets of autism but are probing its biological roots.
Previous studies show 90% of cases result from genetic abnormalities, but those found so far explain autism-related disorders in only 10% of patients.
The newly discovered genetic errors occur before fertilization, Miller says, a finding that bolsters the belief that autism-related disorders are genetic or developmental, not caused later in life by childhood vaccinations.
Researchers at the California Department of Public Health on Monday further weakened the vaccine-autism connection. They reported that autism rates in California have continued to climb, from three per 1,000 in 2003 to four per 1,000 in 2007, even though the preservative thimerosal, which has been widely blamed for autism, was banished from almost all vaccines by 2001.
In the new study, researchers for the first time scanned the entire genetic code of 1,441 children with autism or a related disorder and a similar number of parents whose DNA is stored at the Autism Genetic Resource Exchange. They also scanned the DNA of almost 1,000 patients from Children's Hospital Boston and another 18,000 control subjects from Iceland whose DNA was analyzed by the firm DeCode.
Researchers found 13 children who were missing snippets of DNA and 11 who had duplications. In all the cases, the children had autism or related problems, the researchers report in today's New England Journal of Medicine.
"This might be the tip of the iceberg" of dozens of genetic errors, says Andrew Zimmerman of the Kennedy Krieger Institute Center for Autism in Baltimore. Finding more, he says, would enable researchers to create genetic arrays, much like computer chips, that could be used as a one-shot test for many forms of autism.
"If we can identify children at risk for autism very early, we have the chance to intervene early while the brain is still developing," says Annette Estes of the University of Washington's Autism Center Research Program.
Jean Yates of Pound Ridge, N.Y., the mother of two boys with autism, 13 and 17, was elated to hear her family's involvement in the exchange consortium may have made a difference to other families grappling with autism. "I wanted very badly to help," she says. "We gave so much of our blood."
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Tuesday, December 04, 2007
Asperger’s Syndrome Gets a Very Public Face
Heather Kuzmich has the neurological disorder known as Asperger’s syndrome. She is socially awkward, has trouble making eye contact and is sometimes the target of her roommates’ jokes.
But what makes the 21-year-old Ms. Kuzmich different from others with Asperger’s is that for the past 11 weeks, her struggle to cope with her disability has played out on national television.
She is one of 13 young women selected by the supermodel Tyra Banks to compete on the popular reality television show “America’s Next Top Model.” The addition of Heather Kuzmich to an otherwise superficial show has given millions of viewers an unusual and compelling glimpse into the little-understood world of Asperger’s.
The disorder, considered a form of autism, is characterized by unusual social interaction and communication skills. Aspies, as people with the condition like to call themselves, often have normal or above-average intelligence, but they have trouble making friends and lack the intuitive ability to gauge social situations. They fail to make eye contact and often exhibit a single-minded fixation that can be both bizarre and brilliant.
By definition, people with Asperger’s are outside the mainstream. Even so, in recent months the syndrome has been cast into the limelight. “Look Me in the Eye,” a memoir about living with Asperger’s by John Elder Robison, who once created special effects for the rock band Kiss, has been a best-seller. In August, the Pulitzer Prize-winning music critic Tim Page wrote a poignant article for The New Yorker about life with undiagnosed Asperger’s.
Mr. Robison says the popular appeal of these stories may be due, in part, to the tendency of people with Asperger’s to be painfully direct — they lack the social filter that prevents other people from speaking their minds.
“It’s important because the world needs to know that there are tremendous differences in human behavior,” said Mr. Robison, whose brother is the writer Augusten Burroughs. “People are all too willing to throw away someone because they don’t respond the way they want. I think books like mine tell the world that there is more to us than that.”
But while Mr. Robison and Mr. Page tell the story of coping with Asperger’s from the perspective of men in their 50s, Heather Kuzmich is just beginning her life as an adult with the disorder. And it is often painful to watch her transition from socially awkward adolescent to socially awkward adult.
A gifted art student from Valparaiso, Ind., she has a lean and angular look well suited to the fashion industry. But her beauty doesn’t mask the challenges of Asperger’s. The show requires her to live in a house with 12 other would-be models, and cattiness and backbiting ensue. Early in the show, she appears socially isolated, the girls whisper about her within earshot, and viewers see her crying on the phone to her mother.
One girl is frustrated when Heather, concentrating on packing a bag, doesn’t hear a request to move out of the way. At one point, the others laugh when they stake out their beds and Heather has no place to sleep.
“I wish I could get the joke,” Heather laments.
“You. You’re the joke,” retorts another model, Bianca, an 18-year-old college student who is from Queens.
But while Heather’s odd mannerisms separate her from her roommates, those same traits translate as on-the-edge high fashion in her modeling sessions. In interviews on camera, she often glances to the side, unable to hold eye contact. But Ms. Banks, the ’60s-era model Twiggy and the fashion photographer Nigel Barker, who all appear on the show, marvel at Heather’s ability to connect with the camera. The pop star Enrique Iglesias is so taken by her haunting looks that he chooses her for a featured role in a music video.
In an interview last week, Ms. Kuzmich played down the conflict with the other contestants, saying many more “civilized” exchanges weren’t broadcast. “They didn’t make fun of me that much,” she said.
She tried out for the show, she explained, partly to test her own limits. “It was a point in my life where I was thinking either Asperger’s was going to define me or I was going to be able to work around it,” she said.
To her surprise, she was voted the viewer favorite eight weeks in a row, making her one of the most popular contestants in the show’s four-and-a-half-year history. “I’m used to people kind of ignoring me,” she said in the interview. “At first I was really worried people would laugh at me because I was so very awkward. I got the exact opposite.”
Heather made it to the top five, but flubbed her lines while filming a commercial. Later, she got hopelessly lost in Beijing, managing to meet with only one out of five fashion designers. She was eliminated last week, but has since made appearances on “Good Morning America” and “Access Hollywood.” She says she hopes to continue modeling and eventually become a national spokeswoman for Asperger’s.
“I had no idea it would be this big,” she said. “My mom is beside herself. She watched me when I was a kid not have any friends, and she saw me struggle. She’s glad people are starting to understand this.”
Monday, October 29, 2007
Pediatricians urge autism screening
CHICAGO - The country's leading pediatricians group is making its strongest push yet to have all children screened for autism twice by age 2, warning of symptoms such as babies who don't babble at 9 months and 1-year-olds who don't point to toys.
The advice is meant to help both parents and doctors spot autism sooner. There is no cure for the disorder, but experts say that early therapy can lessen its severity.
Symptoms to watch for and the call for early screening come in two new reports. They are being released by the American Academy of Pediatrics on Monday at its annual meeting in San Francisco and will appear in the November issue of the journal Pediatrics and on the group's Web site — http://www.aap.org/.
The reports list numerous warning signs, such as a 4-month-old not smiling at the sound of Mom or Dad's voice, or the loss of language or social skills at any age.
Experts say one in 150 U.S. children have the troubling developmental disorder.
"Parents come into your office now saying 'I'm worried about autism.' Ten years ago, they didn't know what it was," said Dr. Chris Johnson of the University of Texas Health Science Center in San Antonio. She co-authored the reports.
The academy's renewed effort reflects growing awareness since its first autism guidelines in 2001. A 2006 policy statement urged autism screening for all children at their regular doctor visits at age 18 months and 24 months.
The authors caution that not all children who display a few of these symptoms are autistic and they said parents shouldn't overreact to quirky behavior.
Just because a child likes to line up toy cars or has temper tantrums "doesn't mean you need to have concern, if they're also interacting socially and also pretending with toys and communicating well," said co-author Dr. Scott Myers, a neurodevelopmental pediatrician in Danville, Pa.
"With awareness comes concern when there doesn't always need to be," he said. "These resources will help educate the reader as to which things you really need to be concerned about."
Another educational tool, a Web site that debuted in mid-October, offers dozens of video clips of autistic kids contrasted with unaffected children's behavior. That Web site — http://www.autismspeaks.org/ — is sponsored by two nonprofit advocacy groups: Autism Speaks and First Signs. They hope the site will promote early diagnosis and treatment to help children with autism lead more normal lives.
The two new reports say children with suspected autism should start treatment even before a formal diagnosis. They also warn parents about the special diets and alternative treatments endorsed by celebrities, saying there's no proof those work.
Recommended treatment should include at least 25 hours a week of intensive behavior-based therapy, including educational activities and speech therapy, according to the reports. They list several specific approaches that have been shown to help.
For very young children, therapy typically involves fun activities, such as bouncing balls back and forth or sharing toys to develop social skills; there is repeated praise for eye contact and other behavior autistic children often avoid.
Mary Grace Mauney, an 18-year-old high school senior from Lilburn, Ga., has a mild form of autism that wasn't diagnosed until she was 9.
As a young girl, she didn't smile, spoke in a very formal manner and began to repeat the last word or syllable of her sentences. She was prone to intense tantrums, but only outside school. There, she excelled and was in gifted classes.
"I took her to a therapist and they said she was just very sensitive and very intense and very creative," said her mother, Maureen, 54.
Pediatricians should send such children for "early intervention as soon as you even think there's a problem," Johnson said.
Dr. Ruby Roy, a pediatrician with Loyola University Medical Center, who treats at least 20 autistic children, applauded the reports.
"This is a disorder that is often missed, especially when it's mild, and the mild kids are the ones ... who can be helped the most," Roy said.
Dr. Dirk Steinert, who treats children and adults at Columbia St. Mary's clinic in suburban Milwaukee, said the push for early autism screening is important — but that it's tough to squeeze it into a child's regular wellness checkup.
Some pediatricians have tried scheduling a visit just to check for developmental problems, when children are 2 1/2. The problem is that insurance doesn't always cover these extra visits, Steinert said.
Sunday, October 28, 2007
AS and relationships that work
This is a forum for those who are in a relationship where Asperger's Syndrome is either diagnosed or suspected (either in your partner or in yourself) and who are looking for ways to cope and overcome the difficulties that AS brings. This forum is for for people who are actively trying to improve their relationship, not just survive it. Please try to keep posts positive in nature. It's ok to explain things that haven't worked, but please do it in a way that assists others in their search for solutions and understanding, not to discourage or squash hopes.
Wednesday, October 24, 2007
Autism Speaks - Walk Now for Autism 2007 - this Saturday, Oct. 27
This Saturday, October 27, my family and I will be participating in a very special event, WALK NOW For Autism benefiting the Autism Speaks/Cure Autism Now Foundation. WALK NOW FOR AUTISM unites the community in support of those affected by autism with a noncompetitive 5K walk and community resource fair, where parents meet a variety of autism service providers and kids enjoy arts & crafts, moon bounces and other fun activities. Experience the power of thousands united by a single cause by joining WALK NOW FOR AUTISM: the fast-growing, family-friendly community dedicated to raising necessary funds for autism research, awareness and outreach.
You may be wondering why Cure Autism Now and WALK NOW are so important to me and my family. My involvement stems from a very personal and deep emotional contact with this complicated disease.
My 8-year-old son, Sean, was diagnosed with a form of Autism, Asperger's Syndrome, five years ago. I am very proud of Sean and impressed with his progress so far thanks to hard work on his part, our part and an excellent program within the Cy-Fair School District.
I strongly feel that I can have a direct impact on finding causes and cures for autism. I also feel strongly that Autism Speaks/Cure Autism Now is a wonderful organization which has been instrumental in furthering autism research. In 1995, when Cure Autism Now was founded there were only 12 researches focused solely on autism. Today there are over 300. That is progress. WALK NOW gives us a tangible way to help the nearly 1.5 million other Americans affected by autism and related disorders.
I am asking for your support in helping us raise money for this worthy cause. Any contribution you are able to make would be greatly appreciated, but I ask you to give big as there is a big need for further research. My personal goal is to raise $500.00 for Cure Autism Now and I hope to far exceed that goal. Last year I raised over $750!
It is easiest to donate online by going to our personal webpage at
Sean's Walk Now For Autism page
If you are unable to donate online, you can print out a donation form from that page and hand it to me. All checks should be made payable to Cure Autism Now.
Please feel free to forward this e-mail on.
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Why WALK NOW FOR AUTISM?
Every 20 minutes another child is diagnosed with autism. A cure must be found NOW. Autism is a neuro-developmental disorder that is commonly diagnosed by the age of three, and in some cases, as early as one year. Affecting one in every 150 children born today, autism is characterized by varying degrees of impairment in communication skills, social interactions, and restricted, repetitive and stereotypical patterns of behavior. The money raised at WALK NOW FOR AUTISM supports Autism Speaks / Cure Autism Now's mission to find the causes, effective treatments and a cure for autism through funding essential biomedical and scientific research.
About Autism Speaks and Cure Autism Now
Autism Speaks and Cure Autism Now are dedicated to increasing awareness of the growing autism epidemic and to raising money to fund scientists who are searching for a cure. Cure Autism Now was founded in 1995 by Jonathan Shestack and Portia Iversen, parents of a child with autism. Autism Speaks was founded in February 2005 by Suzanne and Bob Wright, grandparents of a child with autism. Autism Speaks and Cure Autism Now (CAN) recently announced plans to combine operations, bringing together the two leading organizations dedicated to accelerating and funding biomedical research into the causes, prevention, treatments and cure for autism; to increasing awareness of the nation's fastest-growing developmental disorder; and to advocating for the needs of affected families. Together the organizations have awarded autism research grants valued at more than $50 million. To learn more about Autism Speaks, please visit www.autismspeaks.org. To learn more about Cure Autism Now, please visit www.cureautismnow.org .
About Autism
Autism is a complex neurobiological disorder of development that lasts throughout a person's lifetime. Because persons with autism exhibit different symptoms or behaviors, ranging from mild to serious, autism is a "spectrum" disorder, or a group of disorders with a range of similar features.
Children with autism have difficulty communicating and interacting with others. Many individuals with autism seem to retreat into isolation, or fixate on a word, an object, or an activity.
Sometimes symptoms are seen in infancy, while other children develop normally for a year or more before they begin to slip into their own private world. At best, a high functioning person with autism may simply seem eccentric, a loner. At worst, a person with more profound autism may never learn to speak or care for themselves.
You are never prepared for a child with autism. You will gradually come to believe it, but never fully accept it, get used to it, or get over it. You put away the hopes and dreams you had for that child - the high school graduation, the June wedding. Small victories are cause for celebration - a word mastered, a dry bed, a hug given freely.
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I look forward to hearing from you. I thank you very much!
Thursday, September 20, 2007
McCarthy Calls Carrey 'Autism Whisperer'
NEW YORK -- Jenny McCarthy worried about finding a good man after her son, Evan, was diagnosed with autism two years ago. Then Jim Carrey came along. "Beyond doubt it was written in the stars that Jim and Evan were a pair," the 34-year-old actress tells People magazine in its Oct. 1 issue.
"He's actually helped Evan get past some obstacles I couldn't. I sometimes call him the autism whisperer. He speaks a language Evan understands, and Evan feels safe with him."
McCarthy and Carrey, 45, went public with their romance last year. Though she's in love, McCarthy has no plans to marry the twice-divorced actor.
"There will be no certificate," she says. "It goes far deeper than that. Jim came into our life with an open heart and open arms. He's learned a lot about autism. He listens. The power of listening. It can move mountains."
McCarthy and film director John Asher filed for divorce in August 2005, after six years of marriage. Earlier that year, Evan, now 5, was diagnosed with autism.
McCarthy, who starred on MTV's "Singled Out," details Evan's progress in her new book, "Louder Than Words: A Mother's Journey in Healing Autism."
She says Carrey was curious about Evan — in a good way. But she was nervous about introducing them.
"He was intrigued," she says. "He asked questions. Still, it took me about a few months to bring Evan over."
Tuesday, September 18, 2007
Jenny McCarthy Opens Up About Her Autistic Son
Jenny McCarthy vividly remembers the harrowing realization three years ago that her son Evan, now 5, was autistic.
"It started with hand flapping," McCarthy, 34, told Oprah Winfrey on Tuesday's show. There were other telltale indications in her child's behavior, but as McCarthy said, "You only look for the good signs."
Then came the day when Evan suffered a seizure, which doctors – once she got him to the hospital – blamed on a fever. Three weeks later, however, Evan got "a stoned look on his face" while McCarthy and the boy were visiting her parents.
This was another seizure, she thought, "but this one is different. He's not convulsing." Instead, "foam was coming out of his mouth, (and) and after a few minutes, I felt his heart stop," she said.
When the paramedics arrived, she told them about Evan's heart. "They looked at me like I was crazy. I don't know why," she said. Only, as they discovered for themselves, the child's heart was no longer beating, so they administered CPR.
"Why, God? Why me ... Why? Why? Why?" McCarthy recalled thinking in those desperate moments, but then, she said, an inner voice came over her. "Everything's going to come out okay."
Because there was no pediatric hospital near her parents' home, Evan and McCarthy drove three hours back to Los Angeles, during which time Evan suffered several more seizures.
Initially, neurologists believed Evan had epilepsy, by McCarthy's "mommy instinct," as she called it, thought that not to be the case. Finally, a doctor said to her, "'I'm sorry, but your son has autism.' My mommy instinct said, 'This man is right.' I didn't want to believe him ... but ... this man is right. I felt like death."
McCarthy, however, sprung into action. She researched autism on the Internet and was struck by a message that popped up in a corner of the screen. Autism, it told her, "is reversible and treatable."
She worked diligently with her son, putting him on a wheat-free, dairy-free and artificial-additive-free diet to detox his system, and her mantra – which she says is producing results – is "hope, faith, recovery."
McCarthy, who first revealed Evan's condition last May on The View, has put her experiences down in a just-published book, Louder Than Words: A Mother's Journey in Healing Autism.
Evan is McCarthy's son with director John Asher. The couple divorced in 2005, after six years of marriage – which, McCarthy told Winfrey, was strained because of their son's condition.
But, McCarthy also said, there's a new man in her life: Jim Carrey. "He's the 'funny, cute guy' in the book," she told Winfrey and the TV audience. And, she stressed, he is there for Evan.
On the Web site for the Oprah show, McCarthy and actress Holly Robinson Peete, who has discussed her own child's autism with PEOPLE, will answer questions related to the condition. Click here.
"Keep going," said McCarthy as final advice to parents of autistic children. "And we're going to be there online."
Wednesday, June 27, 2007
Scientists eye an enzyme as target in fighting autism
CHICAGO (AFP) - US researchers have reversed the symptoms of mental retardation and autism in mice by inhibiting an enzyme that affects the connections between brain cells, researchers said Wednesday.
In a series of experiments on mice, the MIT investigators showed that they could undo the brain damage seen in a condition called Fragile X syndrome by inhibiting a key brain chemical called PAK.
In humans, Fragile X syndrome (FXS) is the leading cause of mental retardation and the most common genetic cause of autism -- the complex and devastating developmental disorder that is now being diagnosed in increasing numbers of children.
The study raises the intriguing possibility that the brain damage seen in children with the condition can be rolled back and identifies a specific target for potential drug therapies.
"It opens up a new avenue for drug research to treat this condition," said Susumu Tonegawa, a neuroscientist at the Massachusetts Institute of Technology in Cambridge, Massachusetts, and lead author of the paper.
MIT researchers began by creating a batch of mice that had been genetically modified to have Fragile X, a condition in which the neurons of the brain are structurally abnormal and functionally impaired compared to regular nerve cells.
These transgenic mice had many of the behavioral problems seen in kids with the condition: hyperactivity, attention deficits, repetitive behaviors and poor social skills.
The investigators then cross-bred these mice with another batch of mice that had been genetically modified to inhibit the activity of the PAK (p21-activated kinase) enzyme which is instrumental in shaping the formation of neuronal connections in the brain.
The researchers knew that when PAK was inactivated, the mice developed neurons that had short, fat dendritic spines, with a higher-than-usual capacity for relaying the electrical impulses that pass between brain cells.
In other words, the shape and function of the dendritic spines in the PAK mice was just the reverse of those seen in the brain cells of the mice with Fragile X syndrome.
The researchers gambled that the two abnormalities would cancel each other out, and that's exactly what the experiment showed.
The cross-bred mice had been genetically engineered so that the inactivation of the PAK enzyme began two weeks into the mouse's life cycle, which in human terms would be several years after birth.
Tests and autopsies showed that the PAK-blocking action restored electrical communication between neurons in the brains of the double mutant mice, correcting their behavioral abnormalities in the process.
"This is very exciting because it suggests that PAK inhibitors could be used for therapeutic purposes to reverse already established mental impairments in fragile X children," said Eric Klann, a professor at New York University's Center for Neural Science.
The study was conducted by Tonegawa and a postdoctoral student at MIT's Picower Institute for Learning and Memory and appears in this week's edition of the Proceedings of the National Academy of Sciences.
Monday, June 11, 2007
Court to focus on vaccine, autism Monday
WASHINGTON - Thousands of families that allege vaccines caused their children's autism are preparing for their day in court, which could bring them vindication and compensation.
Since 1999, more than 4,800 families have filed claims with the government alleging their children contracted autism as a result of routine vaccinations. Most contend that a preservative called thimerosal is to blame for the impaired social interaction typical of the disorder.
Previously, large scientific studies have found no association between autism and vaccines containing thimerosal.
But many parents say their children's symptoms did not show up until after their children received the vaccines, required by many states for admission to school. If they prevail in the courts, the families are entitled to compensation from a multibillion-dollar trust fund.
The first of what eventually could be nine test cases from those claims is the subject of the hearing opening Monday in the U.S. Court of Federal Claims. Three special masters appointed by the court will preside over the hearing, expected to last through June 29.
Autism is characterized by impaired social interaction. Those affected often have trouble communicating, and they exhibit unusual or severely limited activities and interests. Classic symptoms of mercury poisoning include anxiety, fatigue and abnormal irritation, as well as cognitive and motor dysfunction.
Monday's case addresses the theory that the cause of autism is the measles, mumps and rubella vaccine in combination with other vaccines containing thimerosal. The preservative, about 50 percent mercury by weight, is no longer found in routine childhood vaccines but is used in some flu shots.
In July 1999, the U.S. government asked vaccine manufacturers to eliminate or reduce, as expeditiously as possible, the mercury content of their vaccines to avoid any possibility of infants who receive vaccines being exposed to more mercury than is recommended by federal guidelines.
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On the Net:
U.S. Court of Federal Claims: http://www.uscfc.uscourts.gov
Monday, June 04, 2007
Mild autism has 'selective advantages'
Asperger Syndrome can improve concentration
By Sue HereraWhat happens when children with autism grow up? It may sound paradoxical, but some with the mildest form, Asperger Syndrome, may turn out to be stars.
People with Asperger's often have extreme difficulty interacting socially, preferring to focus on narrow fields of interest. But often they're able to pursue those interests with great intensity. Geniuses throughout history, including Albert Einstein, Andy Warhol and Emily Dickinson, have all been thought to have had Asperger's. And now Nobel Laureate Vernon Smith has decided to speak openly about what he calls the deficiencies and the selective advantages of Asperger's.
“I can switch out and go into a concentrated mode and the world is completely shut out,” he said in a recent interview. “If I'm writing something, nothing else exists.”
Smith received the Nobel Prize in 2002 for inventing the field of experimental economics, which uses laboratory methods to test economic theories. Smith says his capacity for deep concentration contributed to his ability to win the Nobel Prize.“Perhaps even more importantly, I don't have any trouble thinking outside the box,” he said. “I don't feel any social pressure to do things the way other people are doing them, professionally. And so I have been more open to different ways of looking at a lot of the problems in economics."
CNBC: Did you feel like you seemed strange in the eyes of other people?
Smith: Oh, yes.
CNBC: How so?
Smith: Sometimes I'm described as "not there" in a social situation. You know, a social situation that lasts for a couple of hours I find it to be a tremendous amount of strain, so I've been known just to go to bed and read.
CNBC: What led you to teaching? Teaching is very social and you said earlier you don't do well in social situations.
Smith: Teaching ... has forced me into being more social, but it's on professional dimensions that I'm comfortable with. We're talking about things that I have a lot of experience with, and I can relate to students very easily in that mode.
CNBC: Because they're in your world?
Smith: Yes, exactly, that's a good way to put it, they're in my world. And there are maybe worlds out there that I don't understand, so I don't go there.
Smiths' wife, Candace, says it hard at times to understand why her husband can't be part of her emotional world.
"He might not always know what he feels," she said. "In fact, many times he doesn't. He'll say, 'I don't know. What do you mean? ..."
Smith says she's found comfort in the Asperger's label because it's helped put some of her husband's actions into perspective."If you didn't have these words like autism or Asperger's as entry words into your own experience and understanding then you could categorize a child or adult as unemotional, cold, insensitive," she said. "Many people don't understand Vernon and they conclude wrongly about him."
Some doctors who treat people with Asperger's, like Dr. Ami Klin at Yale University, say Smith's success is not typical of people with this disability.
"The vast majority of individuals with Asperger Syndrome need help — without that help they won't be able to do very well," he said. "The individuals that I know have to overcome a great deal of difficulty to maximize their potential and get the things in life they deserve."
CNBC: There are people who think that a number of highly influential executives may have Asperger's or are on the autism spectrum. Is that society making a judgement or is it coming to realize that there are different kinds of minds?
Smith: I think it's different kinds of minds, and the recognition that certain mental deficiencies may actually have some selective advantages in terms of activities. We've lost a lot of the barriers that have to do with skin color and with various other characteristics. But there's still not sufficient recognition of mental diversities. And we don't all have to think alike to be communal and to live in a productive and satisfying world.
Bob Wright: ‘I want my grandson back’
The vice chairman of GE and chairman and CEO of NBC Universal talks about his family's personal crusade to cure autism
Autism is in the news, and it’s about time. On Monday, the Centers for Disease Control launched a new education initiative designed to educate parents of young children about the early signs of developmental disorders such as autism. Among mainstream print media, The New York Times is following this story closely, publishing more than two dozen articles on autism in the past six months. Newsweek has made autism the cover story of its latest issue. NBC News has devoted significant airtime this week to exploring every aspect of this disorder, with reports on “Today,” “Nightly News,” CNBC, MSNBC, Telemundo, the owned NBC stations, as well as on this news Web site. Autism has also been featured recently in entertainment shows such as “Without a Trace” and “Scrubs.”
Why the flurry of interest? Here’s a clue: 1 in 166. That’s the chance a baby born today will have autism. This represents a dramatic increase from a decade ago, when experts estimated the incidence rate to be 1 in 2,500.
What explains this sudden increase? No one knows for sure. What is clear, however, is that autism demands more public awareness, more understanding, and more funding, both private and public.
Last March, our grandson was diagnosed with autism. We have watched helplessly as an apparently normal toddler lost his ability to interact with the outside world. My wife, Suzanne, likens it to a kidnapping, as if someone has taken away the life he was meant to live. We all want nothing more than to have him back where he belongs, restored to his family.
Since the diagnosis, our family has been on a mission to learn all we could about autism, and help ensure our grandchild receives the best therapy and treatments available. Frankly, it’s been a difficult and frustrating challenge. We discovered, to our surprise, just how scarce the resources are for parents dealing with autism, and how thin the knowledge. We had so many questions, and instead of answers, we found a bewildering array of theories and guesses. We found it hard to believe that a disorder with the frequency of autism commands so little public attention and such meager resources devoted to research, compared to other, less common childhood disorders.
Autism is the most widely diagnosed developmental disability in the nation, yet autism research receives only $15 million per year from private sources, compared to more than $500 million for conditions like childhood cancers, muscular dystrophy, juvenile diabetes, and cystic fibrosis — all of which combined together are less common than autism.
Autism Speaks is dedicated to helping families find answers. But neurological disorders are complex, and autism won’t yield its secrets with