Saturday, February 28, 2009

Autism Speaks With Its Own Creative Voice

Dan Akroyd is listed among famous people with Aspergers syndrome, a form of the disorder autism, in the category of Autistic Spectrum disorders.

by Carol Forsloff

That potential to draw, to paint, to play music, to design that comes with the ability to fix specifically on one particular thing in a unique way is being displayed at an exhibition in the United Kingdom. The exhibit allows the public to see the rich array of creative items those with autism can produce if they are given the opportunity to reach their fullest potential.

Mark Lever, NAS Chief Executive, said; "There are over half a million people with autism in the UK - that's 1 in 100 - and many adults with autism tell us how important art and creativity are in their lives. The variety and quality of the work on show is just incredible and we hope this exhibition will bring home to Government, local authorities and the general public just some of the realities faced by people with autism across the UK today."

An online gallery of the work carried in the exhibition will be available at In the meantime the tangible evidence of the fine work of those with autism can be found in the exhibition at The Galleria Pall Mall, 30 Royal Opera Arcade, London, SW1Y 4UY is open 10am-7pm (Tues, Weds, Fri), 10am-4pm (Thurs), and 9am-5pm (Sat).

The National Autistic Society is the principal charity for individuals with autism spectrum disorders that includes both autism and Asperger syndrome. It is active in support of parents, professionals and those with the syndrome. In the United States, where autism is reported to have reached epidemic proportions, the support group on the Internet has a picture that reveals how the organization acknowledges all those involved in assisting individuals with autism as well as the individuals themselves.

The accent on the can do rather than they cannot is part of the victory that parents and the community are able to produce, according to families. One unique individual shares her life in a blog, revealing the level of creativity that can be found in those with Aspergers, within the specturm of autistic disorders. Donna Williams blog is called “ever the arty Autie” and goes on to display her writing and art skills and to discuss her musical abilities, since she is the lead of her own band “Donna and the Aspinauts.” She describes herself and the blog as this: “

This is the blog of Donna Williams, author of the best-selling autobiographies Nobody Nowhere and Somebody Somewhere (there are four books in that series), four text/self help books, a book of poetry and prose, and a number of fiction works . She’s the singer-songwriter/composer of two music CD’s and a mad artist, creating paintings and sculptures!

Williams wrote this in response to the fires in her region of Australia where her own family was impacted:

“But sadly this may not be the end. Scientists warned it would happen. And the ways we’re responding, whilst noble, will not solve the fact we are heading for more of these in the near future.”

Inside her own world, Donna reveals by her writing the ability to look outside it.

Individuals with autism can achieve, and some attain University degrees. Hans Asperger who coined the term Aspergers syndrome, said it best:

"Able autistic individuals can rise to eminent positions and perform with such outstanding success that one may even conclude that only such people are capable of certain achievements ... Their unswerving determination and penetrating intellectual powers, part of their spontaneous and original mental activity, their narrowness and single-mindedness, as manifested in their special interests, can be immensely valuable and can lead to outstanding achievements in their chosen areas."

The hope and the love that can materialize following the initial unhappy news that a child has autism is talked about at conferences and everywhere families and individuals meet or professionals share their experiences about autism. The creative works displayed in the United Kingdom reveals, as was said in the article about it it, a living testimony about the devotion and care that can allow individuals to flourish who might otherwise be left out.


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Ads from The National Autistic Society in UK

A campaign film produced by the National Autistic Society, a UK charity.

Autism: Lunch

Autism: Receptionist

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Who should we focus on my disabled son or my gifted girl?

Autism And Education
Who should we focus on—my disabled son or my gifted girl?

Stephanie Lindsley
From the magazine issue dated Mar 9, 2009

My son and my daughter are happy, active, healthy children who enjoy school and are lucky to have a solid family life. But they are very different. My autistic son tests in the "severe" range in many subjects. At 8, he reads well but cannot answer basic questions about what he has read. He speaks at a 3-year-old level, adores "Blue's Clues" and is almost potty-trained.

My daughter, meanwhile, tests in the 95th percentile nationwide on standardized tests. At 12, she shows an amazing ability to process information, taking complex ideas apart and putting them back together to form new thoughts. She reads an entire novel most Sunday afternoons, solves the Sudoku puzzles in the paper and memorizes the entire script—not just her own lines—for the school plays she loves to be in.

At school, my son spends a portion of his day in a regular classroom. But primarily he learns in a group of two to six children led by an intervention specialist, often accompanied by an aide. Even when he's in the regular classroom, he is never without an adult by his side. His intervention specialist records everything he does in daily logs that are required to ensure funding. She often presents me with new strategies to help him learn a difficult concept, which attests to the volumes of time she dedicates to addressing his unique needs.

My son's teachers do their absolute best for him. I know they love him. But beyond that, his government-mandated Individualized Education Plan legally ensures that he gets every opportunity to excel. In addition, his teachers spend countless hours each year filling out detailed quarterly reports and other government-required paperwork. If I decide that the school district should pay for something extra to improve my son's education, I can appeal to an independent board for mediation.

My daughter spends all but three hours of her school week in a regular classroom, where she often hides a book in her desk and reads while the teacher talks. She complains to me when the teacher reteaches things she learned last year, and she resents being drilled over and over on something she learned in 10 minutes. For three hours a week, she is pulled from her classroom for a "gifted" program with 15 other children, where she works either on a group project with other students or independently on her own blog or a computer-based foreign-language program.

I can only imagine how much my daughter would excel if she had a program specifically geared to her strengths, one that challenged her creativity on a daily basis. Or if she received even half the individual attention my son receives every week. What if she had a person sitting next to her to encourage her to think of new ways of doing things? What if her teacher didn't have to manage a large classroom full of kids, who didn't scold her for "making things confusing for everyone else"? What would happen if she spent all day in a room with two to six other gifted children, along with a couple of adults who specialized in pushing them to realize their potential?

There is no government mandate to fund gifted education. In 2008 there was only $7.5 million in federal grants available through the Jacob K. Javits Gifted and Talented Students Education Program. All additional funding comes from states and private organizations. Compare that with the $24.5 billion allotted by No Child Left Behind, a federal program whose goal is to help every child, including the mentally disabled, meet minimum standards. But is that a wise investment? Wouldn't some of those billions be more wisely spent on special teachers and mandated programs for gifted children, who have the potential to make advances in science, technology and the arts that would benefit everyone?

It pains me to suggest taking some of the federal money designated for my disabled son and spending it on my overperforming daughter. My son will probably meet minimum standards, but most parents of autistic children describe goals for their kids in much more modest terms: being able to bathe themselves, get a job, or live semi-independently. My daughter has the potential for much more. If she were given even a fraction of the customized education that my son receives, she could learn the skills needed to prevent the next worldwide flu pandemic, or invent a new form of nonpolluting transportation. Perhaps she could even discover a cure for autism.

Lindsley lives in Beavercreek, Ohio.


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Friday, February 27, 2009

Autism proposals to be unveiled

Mrs Gillan said nothing was being done to help people with autism in her area

by BBC News

Government plans to improve support for people with autism are expected to be outlined in Parliament later.

The announcement is due when the Autism Bill, introduced by the Tory MP Cheryl Gillan, is debated in the Commons.

It is thought that ministers are unlikely to give the bill the support it needs to become law.

But they are expected to back proposals to make councils and NHS bodies legally responsible to provide support for people with autism.

Huge boost

Mrs Gillan put forward the motion after she came top in the ballot allowing MPs to introduce private members' bills.

MPs who come top in the annual ballot get Parliamentary time to launch their bills, but they need government backing and cross-party support to succeed.

Mrs Gillan said she had chosen the subject because nothing was being done in the area and she wanted a worthwhile cause that would attract cross-party support.

Health Minister Phil Hope has told MPs to say the government is planning work that will achieve the same "outcomes" as the bill.

Mrs Gillan believes he will try to talk out or vote down the bill before it gets to the detailed committee stage.

In a letter to MPs, Mr Hope said people with autism and their families "often do not get the support they need and deserve and this must change".

But he said the government believed it was best done without legislation and was already planning work to achieve the same results.

This included a strategy consultation for adults with autism in April which would include "statutory guidance" - something campaigners say is new and would make local authorities legally accountable for providing support.

He also said they would look at collecting data on adults with autism and ministers would consult on statutory guidance which would mean disabled children's needs were "properly reflected" and services are "better tailored" to meet autistic children's needs.

Matthew Downie, from the National Autistic Society, said the reforms would be a huge boost to the two million people in the UK affected in some way by autism.

"We expect this to make a real difference," he said.

"Particularly for adults, there is a chronic lack of support and services."


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Thursday, February 26, 2009

A one-hour Planet Parent special Asperger’s Syndrome - VIDEO -

This special looks at the impact this syndrome has on several families coping with Asperger’s. We tell their stories and talk to researchers and experts on the origin of this mysterious disorder and the hunt for a cure; featuring Dr. Peter Szatmari of the Offard Centre for Child Studies, McMaster University, geneticist Dr. Steve Scherer and noted social worker Dr. Kevin Stoddart.

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Parents of autistic kids seek class-action status against Blue Cross

by Jennifer Chambers / The Detroit News

DETROIT -- A federal court judge will issue a written opinion on whether parents of autistic children who want Blue Cross-Blue Shield of Michigan to pay for behavioral therapy have viable claims and whether their case should proceed as a class action lawsuit against the insurer.

Christopher Johns, a Warren father whose 7-year-old son is autistic, wants certification of a class of people who have been denied claims on the basis that treatment is experimental. Johns filed the suit in federal court in May 2008 and said he is seeking a class action because more than 7,000 children in Michigan have autism, a neurological disorder that can cause children to become withdrawn, and nonverbal, and avoid eye contact.

Data from the federal government shows that one in 150 American children has the disorder.

Officials with the insurance group have said long-term studies on autism educational therapies have been inconclusive and the treatments are experimental. Michigan law doesn't mandate coverage for such therapies.

U.S. District Court Judge Stephen Murphy heard arguments Thursday from Blue Cross on why the case should be dismissed and from Johns attorneys on why it should proceed.

"Time is a real factor in this case. Children with autism who are between two and seven can make great progress with these programs. We want to move forward as fast as we can," Gerard Mantese, Johns' lawyer said.

There's no cure for autism, but research shows that early intervention through intensive therapies and other services can improve development, according to the U.S. Centers for Disease Control and Prevention.

In the lawsuit, Johns says applied behavioral analysis has scientifically documented results that ABA therapy is effective in treating autism.

In the suit, Johns cites two programs by Beaumont Hospital that provide ABA therapy, the GIFT of Hope program and the CARE program, which are supervised by licensed psychologists on site.

The GIFT program allows parents of autistic children to participate in the treatment of their children with the goal of teaching parents to apply ABA techniques on a day-to-day basis. In the CARE program, individual treatments focus on communication, social interaction, play, self-help and pre-academic skills, as well as reducing problematic behavior.

The lawsuit is seeking damages and an injunction requiring Blue Cross to provide coverage for future treatments.


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Autistic student denied school move

by Lena Mitchell - Daily Journal Corinth Bureau

OXFORD - The parents of a 6-year-old Prentiss County student diagnosed with a form of autism were denied a temporary restraining order Wednesday that would have allowed him to attend school in Tishomingo County.

U.S. District Judge Michael Mills ruled that since Deanna Thacker's tax records show her to be a resident of Prentiss County, the child is not entitled to attend Tishomingo County schools until the school board reviews the matter March 9.

Deanna Thacker withdrew her son, Ryan Thacker, from Hills Chapel School in Prentiss County, alleging he was constantly sent home from class, physically restrained on numerous occasions, slapped in the face and threatened with a paddle.

Ryan Thacker has been diagnosed with Asperger's Syndrome, a mild form of autism that may lead to "social isolation and eccentric behavior."

Deanna Thacker sued the Prentiss County and Tishomingo County school districts on Tuesday, saying that Ryan was being denied the free, adequate public education guaranteed by state law.

The request for a temporary restraining order asked that Ryan be allowed to attend the Burnsville School in Tishomingo County while a jury trial is pending on the lawsuit.

After Deanna Thacker withdrew Ryan from school, Prentiss County released him to attend Tishomingo County, but Tishomingo County would not allow the transfer.

Prentiss County has since said they would accept him back.


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New avenues of help open up for the autistic

by Gail Johnson

By the time Karen Simmons’s last child came along, she knew a thing or two about babies. Jonathan was her sixth. So when he was a toddler and started doing things like spin in circles or flap his hands in the air, the Edmonton mom didn’t think much of it. But her sister-in-law kept saying that she thought something wasn’t quite right with the little boy. When Jonathan, who’s now 18, started peeling wallpaper off the walls and avoiding eye contact, Simmons began to wonder if her in-law might be right. Eventually, the family learned Jonathan was autistic.

“I was traumatized,” Simmons tells the Georgia Straight in a phone interview. “I thought my life was over. I thought, ‘No way. There is no way he has autism.’ All you hear is, ‘There’s no cure. It’s a lifelong diagnosis. There’s nothing you can do about it.’ Well, that was around 1990. We’ve come a long way.”

She’s not exaggerating. Jonathan—who had “early intervention” treatment, which involved occupational and speech therapists, among other health professionals—loves computers, goes to college, and has his driver’s licence.

That’s not to say the family’s journey has been easy.

“We were all on a huge learning curve,” says Simmons, who also has a child with attention deficit disorder. “People need to understand, not to jump to conclusions when parents can’t handle their child, to think, ‘Maybe there is something else going on.’ People are very judgmental. We’ve all heard comments like, ‘Why can’t you manage your child? What’s wrong with you?’ ”

Autism is a neurological-spectrum disorder, meaning that there’s a wide variation in how the condition presents itself. According to the Autism Society of B.C., some people with autism have below-average intelligence while others have average or above-average. All have trouble interacting appropriately in social situations. Four out of five people affected are male.

Simmons’s experience with autism instilled in her the determination to help others, people like her who, at the outset, had no idea what they were in for. She started out by writing a book, Little Rainman: Autism—Through the Eyes of a Child (Future Horizons), in 1996. Then she founded Autism Today, a grassroots organization that now has about 60,000 members worldwide.

Autism Today is hosting its biennial conference in Vancouver from February 26 to March 1. Open to the public, the conference will cover various therapies, including applied behavioural analysis, biomedical intervention, the SCERTS model (social communication, emotional regulation, and transactional support), and the Miller method, among others, as well as nutritional and holistic approaches to the disorder.

“People have choices,” Simmons says. “There is so much that can be done.”

The conference’s theme is “autism through the lifespan”. Government funding for people with autism usually stops between the ages of 18 and 22, Simmons says, emphasizing that this is a big obstacle for many families to overcome.

One of the conference presenters, William Shaw, will be sharing new research into treatment. The director of the Kansas-based Great Plains Laboratory for Health, Nutrition, and Metabolism tells the Straight that the use of cholesterol seems to hold promise in managing autism.

“A large percentage of children on the autism spectrum have low cholesterol,” says Shaw, a biochemist, in a phone interview. “Everything thinks, ‘Oh, low cholesterol: that’s great.’ Well, it’s not great.…Very high cholesterol is bad, and very low cholesterol is also very bad.”

He says that he’s used cholesterol supplementation in people with autism and that certain behaviours, such as self-mutilation or aggression, ceased “almost immediately”. “When we stopped the supplementation, the aggressive behaviour returned.”

He cautions that more research is needed, noting that Johns Hopkins University plans to look at cholesterol’s role in treatment.

“This could open up a whole new avenue of treatment,” Shaw says. “And because it’s a supplement, not drugs, people can try it out on their own if they’re comfortable before waiting for the results of the formal studies, which will take years and years.”

Shaw, whose 19-year-old stepdaughter has a severe form of the disorder known as Rett’s syndrome, will also discuss genetic variations common in people with autism.

Vancouver resident Sarah McGowan attended the last Autism Today conference in Vancouver in 2007. The mother of four, whose youngest child has autism, says the more information that parents have, the better. Her son wasn’t diagnosed until he was four, even though he hadn’t yet started to talk and had long been physically harming his parents and sleeping only four hours a day.

Now eight, McGowan’s son is doing well, thanks to several strategies, including verbal applied-behavioural analysis and nutrition.

“We started a gluten-free diet, and he just blossomed,” McGowan says in a phone interview. “He started having eye contact; he started having friendships with other kids. If he has gluten, there’s a big regression.”

McGowan, who has three older kids, urges other parents not to get discouraged.

“You can’t just read all the doom and gloom,” she says. “If you do that, you’ll feel defeated, overwhelmed, and then you’ll be no help to yourself or your children and your family. Do some reading, then take a break after 30 minutes. Put on a song or a movie or read a book. Replenish yourself.

“Even through the misery, hardness of him not talking, not sleeping, the aggression and the harm, we just naturally loved him through all this,” she says, “and we knew we were going to figure it out one way or another.”


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My Sweet Angel by Daniela Clapp

Hello All,

My name is Daniela and I am from Germany where I learned how to play the piano. After High school I moved to the USA to further my musical studies. I now have a child with Down syndrome, I call it Up-Syndrome, her name is Christina and she has changed my life and threw my world off it's axis. I have never cried as much and I have never laughed as much, I have never been more frustrated and never been so hopeful as I have with this little Angel in my life.

Our special little Angels live in a different world internally and see and experience the world differently then we do. We can never completely enter or understand their world and they will never fully be part of our world. But through music we can connect 100% and be in the same world with them during those special moments when we listen to beautiful music together. "When words fail, music speaks".

Neuroscientists have researched music and it's role in the developing brain. Music stimulates the critical and intellectual part of the brain and improves cognitive thinking skills and builds self-esteem, while having a calming and soothing effect at the same time. The whole range of emotions can be held within the rhythms and harmonies of music and the intimate connection with music can remain despite disability or illness.

My mission is called "Mission Possible". I help children with disabilities by introducing them to music and teaching them how to play the piano. I also have a CD called "Heart of a Child" which you can find on my website Portions of the proceeds go to organizations to help better the lifes and rights of those with disabilities. I also do some public speaking and performing to advocate for kids with disabilities. So if you like me to come and speak to your group (the theme will be "Music and Disability/ Mission Possible") contact me through my website.

Again go to and secure your very own copy of the beautiful CD "Heart of a Child" and help someone who needs our help. The gift of music is easy to give, but the echoes are truly endless.

With all my Love and Heart,

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Wednesday, February 25, 2009

Couple Lives With Autism, Comfort of Each Other


Click here to view the Video:

David Hamrick, 29, and Lindsey Nebeker, 27, look like a typical couple in love, but what's not apparent is how hard they've worked to be together.

Hamrick and Nebeker live together in a Jackson, Miss., apartment, yet they have separate bedrooms, eat meals apart and spend most of their time focused on their own interests.

This unusual setup is how Hamrick and Nebeker, who are both autistic, make their relationship work.

About 1.5 million people in the United States have autism, with varying degrees of severity. Many people with autism struggle with the most basic social interactions, so finding love may seem like an impossibility.

Hamrick and Nebeker are high-functioning but, since childhood, both have found it difficult to make friends and even harder to keep them.

"All of her socialization had to be learned, usually by hard experience," said Nebeker's father, Gordon Nebeker.

Autistic people can also be hypersensitive to touch and sound. Hamrick can't stand when the room is too warm and cringes at certain sounds; Nebeker can't take florescent lights; and both are profoundly uncomfortable with small talk, said Lynn Harris, who profiled the couple for Glamour magazine.

Learning to Interact with Autism

Despite their difficulties, they both kept trying to reach out and connect with others. Nebeker learned to make friends by reading Dale Carnegie's "How to Win Friends and Influence People." Hamrick had tried to untangle the rules of dating by reading self-help books.

"No one teaches you to flirt," said Diane Twactman-Cullen, editor in chief of Autism Spectrum Quarterly. "Individuals with autism would really be at a loss. So there might be some missed signals."

When Hamrick and Nebeker met in 2005 at an autism conference, Hamrick was smitten.

"I pretty much liked everything about her," he said. "She was very sweet, easy to talk to, and a good listener."

But Nebeker was unsure.

"In my early 20s, I had decided I was no longer going to seek a relationship," she said. "I was mainly going to focus on my career and my friends that I had been able to make and keep."

They became friends. Then one day when they were at a café, Hamrick knew he was making progress when he put his hand on hers.

"My heart was racing," Hamrick said. "I was fearful it might not work out the way I had anticipated, but the fact that she didn't pull back and she was able to hold my hand there for at least five minutes, I was very touched by that."

Living Together With Separate Needs

After two years of dating, they took the huge step of moving in together, despite their unique and separate needs.

Nebeker admits that it seems highly unusual for a typical couple to agree to separate bedrooms.

"We both understood the importance of an individual with autism needing their own space," she said.

When they are in their apartment, they are rarely together. Hamrick, a meteorologist, is often in his room on the computer or absorbed in the Weather Channel while Nebeker, a musician, can get lost for hours playing the piano and working on her music.

A romantic dinner for two presents major challenges.

"There are a number of sounds that are unpleasant to me," Hamrick explained. "Such as chewing sounds and crunching sounds."

And Nebeker has many complicated eating rituals. Her napkin has to be placed just so and her meals prepared in just the right way.

"Sometimes Dave will spontaneously ask, 'Hey, you want to go out for dinner tonight?' And I break into sobs and I say, 'I am so sorry, I just can't. I just can't,'" Nebeker said.

The couple's parents have seen their children struggle with their disorder and are in awe of the way the two care for each other and express their love and devotion.

"Being high functioning is almost more difficult than being low functioning," said Gordon Nebeker. "You are so close to there, and yet not quite -- and that is heartbreaking."

But for all the compromises, the couple's love story is actually a pretty traditional one, one of deep understanding and acceptance.

"When I have had a bad day at work or just a bad day for some other reason -- and I come home, I don't even have to say anything, he senses it. Dave will come up to me and start cuddling up to me and that's really all I need," Nebeker said. "I know that I am with a partner who is not going to judge me for certain eccentricities I have."


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xtraordinary Artist Views Autism as a Gift - Video included -

Reporting Ron Matz

Click here to view the video:

Katie Miller is an exceptional artist and award winner who says her autism is a positive influence on her work.

Ron Matz reports the Maryland Institute College of Art graduate is about to head to one of the world's biggest stages.

From the provocative to the innocent to the vulnerable, these are the people and faces of Baltimore artist Katie Miller.

"The majority of my artwork is about the relationship between the mundane and the surreal, and how it relates to changing contemporary notions of childhood," Miller said. "I'm interested in things that look like they may be scenes from every day, but when taken out of context they seem very odd or abnormal."

She is active in the autistic rights movement.

"Most of us are quite happy the way we are. We don't want to be cured. We're offended a lot by a lot of the media portrayals of autism as devastating and tragic and needing to be fixed because we are people the way we are," said Miller.

Katie was just named a winner of the Wynn Newhouse Award for artists with disabilities. Next month her "Child Standing on a Dresser" will be part of the prestigious VSA Armory Show in New York.

In 2006, Katie studied in Italy and then she graduated with honors from the Maryland Institute College of Art.

She's an extraordinary artist who sees her autism as a gift.

"I think of autism as a gift because it gives me an excellent attention to detail. I'm able to stay in my studio for really long periods and not notice anything else. I'm very sensitive to color, to detail, to line and shape and that really helps my art," she said.

The Armory Show in New York will be March 5-8. More than 50,000 people are expected.


Katie Miller was born in New Hampshire in 1984, and grew up in Boca Raton, Florida and suburban Sacramento, California. By age five, Miller had decided to become an artist. She took her chosen role very seriously and taught herself to draw during childhood. By her early teens, Miller was showing, selling, winning awards, accepting portrait requests, and receiving press attention for her artwork.

In 2006, Miller studied at the International School of Art in Umbria, Italy. Miller is also the recipient of two merit-based scholarships at Maryland Institute College of Art (MICA) in Baltimore. She graduated from MICA in May 2007 magna cum laude with a BFA in painting and a minor in art history.

Miller’s work has been shown at the Smithsonian Institution, the John F. Kennedy Center for Performing Arts, the Fort Wayne Museum of Art, and is represented in the permanent collection of Access Living, a Chicago nonprofit. She is a 2008 winner of the prestigious Wynn Newhouse Awards.

Miller currently resides in Baltimore County, Maryland. She plans to begin working on her MFA in the fall of 2009.

Katie's website:

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Tuesday, February 24, 2009

Son of slain KSU professor charged with murder

by Ed Meyer

Beacon Journal staff writer

Murder charges have been filed against an 18-year-old autistic man accused of the fatal beating of his mother, Kent State University political science professor Gertrude ''Trudy'' Steuernagel.

Sky Walker has been held at the Portage County Jail in lieu of a $2 million bond since the Jan. 29 attack at the family's home in Franklin Township.

A grand jury returned an indictment against Walker for two counts of murder and one count of assault on a law enforcement officer, according to court records. The indictment was filed last Friday.

Steuernagel, 60, died Feb. 6 at Akron City Hospital from injuries suffered in the beating. Results of an autopsy by the Summit County Medical Examiner's Officer are pending, a spokesman said today.

Portage County Sheriff David Doak said deputies were sent to the Franklin Township home about 11:40 a.m. on Jan. 29 after Steuernagel's friends became concerned when she did not show up for classes.

Deputies found Steuernagel's body on the kitchen floor, and when they began searching the home, they found her son in the basement. Walker is accused of kicking a deputy during a struggle.

Portage County prosecutors are awaiting results of an evaluation of Walker by the Summit County Psycho-Diagnostic Clinic to determine his IQ and whether he is competent to stand trial, court records showed.

Steuernagel had been a Kent State faculty member since 1975. She taught courses in political theory, women and politics and public policy. She won the Distinguished Honor Faculty Award in 1994.


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Seizures in Autistic Children

by Kim Goff, Philadelphia Special Needs Kids Examiner

My son Christian, is PDD-NOS, 8-years-old and has never had any serious medical problems. So, we were horrified when he suffered from a seizure in December 2008. According to, “one in four autistic children can develop epileptic seizures, typically during adolescence. It is believed that the seizures are triggered by hormonal changes. The seizures may be noticeable, with clear symptoms such as convulsions, blacking out, or odd body movements. However for some, the seizures are not quite so obvious. In these cases, tantrums, self-injury, little academic progress during the teen years, or a loss of previously-acquired behavioral skills may be subtle signs of a subclinical seizure disorder”. Therefore, the purpose of this article is to educate parents about the potential risk of seizures that is linked to autism, as well as general information and resources.

What is a seizure? states that seizures are sudden bursts of abnormal electrical activity in the brain that may affect a person's muscle control, movement, speech, vision, or awareness (consciousness). The effects of seizures depend on a person's individual response, as well as the seizure type, frequency, and severity. Some seizures make a person fall to the ground in convulsions, in which the muscles stiffen or jerk out of control. Others may stare in a trancelike state, have only a few muscle twitches, or sense a strange smell or visual disturbance not experienced by anyone else.

Autism and Seizure Disorder

Approximately 20% to 35% of individuals with autism have a seizure disorder. About one in four autistic individuals begin to have seizures during puberty. The exact reason for the onset of seizures is not known, but it is likely that the seizure activity may be due to hormonal changes in the body. Sometimes these seizures are noticeable, (ie. associated with convulsions); but, for many, they are small, subclinical seizures, and are typically not detected by simple observation. Some possible signs of subclinical activity include the following: exhibiting behavior problems, such as aggression, self-injury, and severe tantrums; making little or no academic gains after doing well during childhood and pre-teen years; and/or losing some behavioral and/or cognitive gains.

What to do if your child suffers a seizure
  • Protect the person from injury.
  • Keep him or her from falling if you can, or try to guide the person gently to the floor.
  • Try to move furniture or other objects that might injure the person during the seizure.
  • If the person is having a seizure and is on the ground when you arrive, try to position the person on his or her side so that fluid can leak out of the mouth. But be careful not to apply too much pressure to the body.
  • Do not force anything, including your fingers, into the person's mouth. Putting something in the person's mouth may cause injuries to him or her, such as chipped teeth or a fractured jaw. You could also get bitten.
  • Do not try to hold down or move the person. This can cause injury, such as a dislocated shoulder.
  • Call 911
If your child suffers a seizure it is important that you are able to provide as much information as possible to the medical staff treating your child. Try to remember the following:
  • What happened prior to the seizure (behavior, injuries, lack of sleep, medication, etc.)
  • The length of the seizure
  • Behavior of person after the seizure
For more information on seizures please visit the author’s resource list below.



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Autism: Finding hope

by ANGELA POMPONIO for Body & Mind - Tuesday February 24, 2009

Kyle Weiss had the signs by age 2: He dumped toys over his head instead of playing with them. He couldn't sit still and wasn't beginning to talk like other toddlers. "There were no words like 'Mommy, Daddy or I love you,'" Kyle's mother, Patricia, said.

So when Patricia Weiss and her husband, Jeff, of Carlisle, went on a family vacation that year, relatives hinted that he should be seen by a pediatrician.

The couple did, and they returned with the diagnosis that they had prepared themselves for: Kyle had autism, a complex neurological disorder, one that affects a person's brain function in varying degrees. Generally making an appearance in children by their 3rd birthday, the disability often impairs development of social skills, language and behavior.

Jeff Weiss took the news hard. "I didn't think about it for a while. The admission that there is something wrong with your child is hard," he said.

It was a similar scenario for Suzy Brenner of Mechanicsburg, who, as many mothers do, remembers her son Alex's first words: Baby, Dad, kitty and ball. In a matter of months, however, Alex, then nearly 3 years old, stopped using his words. Instead, he started whining, banging his head on furniture and staring sideways at the television.

Suzy Brenner, a Mechanicsburg hair stylist, delicately trims her son's hair in her beauty parlor. Years ago, Alex, who is autistic, wouldn't let her touch his hair without several other people helping. Today, numerous parents go to Suzy Brenner when their autistic and mentally handicapped children need haircuts.

Brenner, whose other son was 7 at the time, knew deep down that something was wrong with her younger boy. "All of a sudden, Alex wouldn't respond to his name, and all the language he had learned went out the window," Brenner said. "He never pointed to get something so I could never figure out what he wanted."

Brenner's intuition and suggestions from friends led her to an appointment at the Penn State Milton S. Hershey Medical Center. While there, she left the doctor's office for a few minutes to calm Alex, who had become increasingly agitated. When she returned, the doctor filled her in.

The doctor said, "'I just told your husband. Alex has autism,'" Brenner said, recalling that day nearly 17 years ago and the long, quiet ride home with her husband, Rick.

Autism? Just what was it? Why her son? What did it mean for his future? Looking for answers, Brenner walked to the library and pulled out an encyclopedia. Within its pages, she found one line that stood out: There was no cure. "That was scary," Brenner said.

With a few books on possible treatments and therapies for autism, Brenner returned home, determined to fight for Alex. She wanted him to one day say "Mom," read storybooks and attend school with other children. She couldn't imagine Alex spending the rest of his life banging his head repeatedly. That's when she prayed: "Lord, just give me the strength here."

Diagnoses on the rise

Since the early 1990s when Alex Brenner was diagnosed with autism, not much has changed about the disorder. Researchers still haven't discovered a definitive cause, although genetics, vitamin levels, environmental factors and vaccinations have been targeted. There is still no cure.

What they do know, however, is that diagnoses are on the rise, and at an alarming rate.

In April 2007 -- a month now dedicated nationwide as Autism Awareness Month -- the Centers for Disease Control and Prevention announced that one in 150 children is being diagnosed with autism spectrum disorders (ASDs), possibly more. The data was collected for two years among 8-year-old children in 20 states, making it the largest study so far into childhood autism.

Among other CDC findings about autism:

• It is three to four times more prevalent in boys than in girls.

• There appears to be no statistical difference among children of different races.

• Children are being diagnosed at 4 to 5 years old, long after the signs of autism begin, usually at 24 months.

At the Penn State Milton S. Hershey Medical Center, Jeannette C. Ramer, a pediatrician who specializes in autism and other developmental disorders, wasn't surprised by the CDC's study.

"I believe firmly that we're seeing more children with ASDs," she said, noting that her office is "overwhelmed and overloaded" with appointments from parents who have autistic children or who are seeking a diagnosis.

Most of the families have been referred there from county early-intervention programs that screen children for developmental problems, including autism. "By the time they get here, the vast majority of parents have thought it through that their child may have autism," Ramer said. "At times, it's a relief when a family finally has an answer."

She offers them hope and refers them to services throughout the region. "Many of the children will improve because of early intervention," Ramer said. (Some experts say the disorder is detectible as early as 12 to 15 months old.) "There's a certain core group that may not improve because they're severe cases, but, for the vast majority, they are going to experience improvement. It's not improvement, though, without painful experiences and a lot of work."

Patricia and Jeff Weiss know that for sure. Kyle, now 7, is a doting, energetic boy with an intelligence that takes many by surprise. He taught himself how to use the computer and can find Web sites on his own.

Still, he hasn't mastered potty training, has trouble sitting still and has occasional tantrums -- common behaviors for children with the disorder. Whenever possible, he tries to flush objects --
mostly toothbrushes -- down the toilet. Once, fascinated with eggs, he quietly took a dozen from the refrigerator and cracked them throughout his bedroom.

Kyle's attention span grows through music lessons with Victoria J. Rowe, music therapist with the Living Unlimited Program in Lower Paxton Township. In addition to drums, Kyle plays the xylophone and tambourine.

"You almost have to be a step ahead of him all of the time," Patricia Weiss joked. "We've lost so many toothbrushes to the toilet. We even had to call a plumber." Still, Kyle has made
significant strides from the toddler who babbled and never spoke words the way he can today.

The family spends hours working with their son -- Mom stays at home with him, and a therapy aide is there several hours a day. He has attended music and aquatic therapy classes twice a week for nearly three years.

"He loves water, so he learned how to tie his shoes at the pool and even learned handwriting in there," she said.

Music lessons, meanwhile, have helped strengthen his attention span. Another blessing came when the family acquired Gilly, a black Labrador, through Susquehanna Service Dogs in 2004. A year earlier, when Kyle was about 3 years old, he squeezed his way through a window and was found playing in a neighbor's yard. Gilly is trained to find Kyle -- whom Weiss jokingly calls her little Houdini -- if he should ever try to sneak out of the home again.

Kyle practices handwriting in a place he's most comfortable -- the pool at HealthSouth Rehabilitation in Mechanicsburg. Here, he works with therapy assistant Esther Strader and, far right, therapy aide Emily Martinelli.

There's still a long road ahead, however, and the couple often dreams that their son will attend school full time with an aide next year. "There's a perception that, with autism, it's the end, that their lives won't get better," Jeff Weiss said, admitting he was bewildered for weeks after receiving Kyle's diagnosis. "But then you come to realize that 'OK, my son's life is going to be
different, but it's certainly not over.'"

Strength in numbers

Such strength was delivered to the Brenner family, too. Suzy and Rick Brenner along with their oldest son, Wes, invested countless hours to improve Alex's behaviors and language skills. At one point, the work took nearly 40 hours a week, with the help of several therapists. There were multiple trips to Bethesda, Md., for Alex's auditory therapy. It worked.

Not long after the therapy, Alex, then 9, started to speak more. On a night Suzy Brenner won't forget, he gathered all of the family pictures in the living room." I didn't know what he was going to do. He started pointing at our photographs and naming each one us," Brenner said. "I said, 'That's right, Alex. That's your family.'"

"Family," Alex repeated.

Today, Suzy Brenner, a board member and a past president of the Autism Society of America's Greater Harrisburg Chapter, has become a go-to person for parents whose young children recently have been diagnosed with the disorder. Customers who walk into her Mechanicsburg hair salon -- many of them autistic children and their parents -- are greeted with a large posterboard that contains facts about the disorder and photos of Alex, now 17.

He attends the NHS Carlisle Autism School and recently started his first job, folding pizza boxes twice a week at a local restaurant. He volunteers at church, filling pews with prayer cards and offering envelopes.

His favorite food is pizza, and it's also his favorite word. Like many autistic children and adults, he repeats the word throughout the day.

Alex will remain in school until he's 21. After that, Suzy Brenner thinks that he may one day be able to live in a group home among peers, cook on his own and work. "There are so many milestones that I never thought we'd see when he was 6 or 9 years old," said Suzy Brenner, who helps organize a picnic every year for the local ASA chapter, which has about 150 active families and 400 people on its mailing list. The group meets monthly, has a lending library and
offers year-round activities to connect families faced with autism

"Early intervention is the key," Suzy Brenner said of her advice to anyone thinking his or her child is showing signs of the disorder. "Don't ever ignore that gut feeling. If you think something is wrong, there most likely is. Early intervention has proven, though, that these kids can make it."

How are Autism Spectrum Disorders diagnosed?

Because a medical test doesn't exist for Autism Specturm Disorders or "ASDs," physicians look at a child's behaviors to make a diagnosis.

A thorough evaluation may include observations, parent interviews, developmental histories, physchological testing, speech and language assessments and, possibly, the use of one or more of a variety of autism diagnostic scales. Typically, a child with ASDs may exhibit the following behaviors, according to the Centers for Disease Control and Prevention's Autism Information Center:

Not play "pretend" games, such as trying to feed a doll.

Not point at objects to show interest. For instance, a child might not point at a train rolling by or an airplane flying overhead.

Not look at objects when another person points at them or not show an interest in other people at all.

Avoid eye contact and want to be alone.

Have trouble understanding people's feelings or talking about their feelings.

Prefer not to be held or cuddled or might cuddle only when they want to.

Appear to be unaware when other people talk to them but respond to other sounds.

Are very interested in people, but not know how to talk to, play with, or relate to them.

Repeat words or phrases said to them, or repeat words or phrases in place of normal language.

Repeat actions over and over again.

Have trouble adapting to changes in their routine.

Exhibit unusual reactions to the way things smell, taste, look, feel or sound.

Lose skills they once had, such as not saying words that they once used.


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How we're fighting our child's autism

Geoff Sewell and Simone Lanham were devastated when doctors told them their daughter’s condition was incurable. But after three years of research and treatments costing £100,000, they are seeing surprising results. Rob Sharp reports

It’s hard to be a parent at the best of times – but when one of your children is struggling to cope with autism, every day is a challenge. Most parents of autistic children set about learning to adapt their lives and their thinking to the condition of their child, but Geoff Sewell and Simone Lanham are not content simply to learn to cope with their daughter Sienna’s autism.

Since Sienna, five, was diagnosed, they have fought her condition, using a combination of behavioural therapy and changes in diet. And the couple – who both work in the entertainment business – feel that they are winning, although they are paying a financial as well as an emotional price; the treatment has so far cost them in excess of £100,000.

“When we got the diagnosis, we were not given any advice on how to treat autism at all,” Simone says. “We were just told that it was a lifelong condition and was not treatable. Since then, we have been trying to send out the opposite message – that autism is treatable, and some children improve so markedly that they lose their diagnosis altogether.”

The couple were told about Sienna’s condition in 2005 by a team that included a paediatrician, a speech and language therapist and a psychologist. “We were completely devastated by the news,” Geoff says. “And we were very shocked by the diagnosis. It took a team of experts around two months after being seen through the NHS, and then we sat there and tried to take it all in. I think Simone broke down after they said they did not advise that our daughter should get married when she was older. And then I asked the question of whether she would be teased in the playground. They didn’t really answer that. That’s when I broke down. After that we went to Regent’s Park and just bawled for four hours.”

The changes Geoff and Simone saw in Sienna’s behaviour came gradually. “We were travelling the world with Geoff, who is a musician, and we were not really in an environment to compare Sienna with other kids,” Simone says. “So maybe we had our heads in the sand for longer than we should have. And when the health visitor advised how many functional words Sienna should have, I realised that she didn’t really say ‘hello’ or ‘bye bye’. We went through a process of assessment that lasted several months. When I explained to the doctors about Sienna’s behaviour, they just nodded their heads. I realised that, OK, this must be bad.”

Simone now sees, in retrospect, that Sienna displayed many of the characteristic signs of autism in her early life. Her daughter rocked back and forth, showed poor evidence of eye contact – except with her parents – and had erratic sleep-patterns. She screamed frequently and banged her head, beyond the expected tantrums of the “terrible twos”. “Her behaviour deteriorated as she got older,” Simone says. “Eventually, she would be awake for seven hours a night. There were a lot of indicators when we looked back. She was very much in her own world, really. She wasn’t interested in other children or other adults. That’s what we had to deal with.”

After the pair returned home from tour, they began researching autism on the internet. Simone discovered the Defeat Autism Now (DAN) network, an organisation for those dealing with autism on a day-to-day basis. DAN advocates a biomedical approach.

Feeling that this was a better approach than that offered by her doctors, Simone began testing Sienna for dietary deficiencies: if certain vitamins or minerals were lacking in her diet, for example, they would be increased. “The first thing we did was to take dairy and gluten out of her diet. And as soon as we took her off her bottle of milk, she said her first functional word, which was ‘water’,” Geoff says.

This approach is complemented by the work of a behavioural therapist. “Sienna doesn’t develop lots of normal life skills to fill in the picture,” Simone says. “She goes to mainstream school and she went to mainstream nursery, but she has a ‘shadow’ – someone who’s a bridge between her and the outside world, giving her the skills to fill in those gaps that don’t develop normally.” This “shadow” is employed by the family, at some expense, but they feel it is worth it.

The pair are confident that their approach to dealing with Sienna’s condition is yielding results, and that she will “graduate” from the programme she’s being treated with. Then, it is hoped, she will be able lead a much more normal life than would otherwise have been possible. In order to help other families, they have set up The Sewell Foundation, a charity, with the controversial slogan “Autism is treatable. Recovery is possible”.

Last month, it was announced that it may soon be possible to screen unborn children for autism using amniocentesis (although parents would not know how severely their child might be affected). “The earlier you know that your child has autism, the more you can do about it,” Simone says. “However, the important thing to remember is that more help needs to come from government, and funding so that families can deal powerfully and positively with autism now. Would it have made a difference to us if we had screened? I can’t answer that. I don’t look back, I look forward. I do know that both my children are amazing – and how could I live without them?”

The couple are keen to stress that autism should be addressed early, whatever course of action is taken (although they were adamant that they did not want their daughter treated using conventional medicines or drugs). In any case, parents should not give up hope. “We are positive people anyway,” Geoff says. “We were pretty depressed at the start. So [what is it like for] people who are not that way inclined? They will listen to the doctors, and think they have no hope.

“It is also a revelation having our other daughter, Olivia, around, because we can see how she develops normally,” he says. “If I am mowing the lawn, Olivia will come and copy me. Or if I say something, she will parrot it. Sienna will not do that. She has to be taught everything through incidental learning. There are a lot of cynics out there who will criticise behavioural therapy, but there are lots of different kinds. From our experience of talking to other mothers, you need to find the best approach for your child. Sienna does learn now. She does copy her peers. If we hadn’t acted, she wouldn’t have done.”

However, the medical profession is sceptical about the couple’s approach. “In a diagnosis of autism, there is very little evidence of interventions being curative,” says Richard Mills, research director for the charities Research Autism and the National Autistic Society. “A number of parents have recorded improvements with dietary interventions, especially those that remove dairy products or wheat. But they don’t seem to impact on the autism, more on the behaviour. Similarly, the behavioural interventions are well researched in terms of reducing the symptoms of autism and, importantly, the child’s level of functioning? [but] even then, not across the board.” Mills says such treatments suit some parents better than others.

So far, the medical profession has been unable to secure funding for a major study of the link between diet and autism, and remains adamant that research is the only way to tell whether such methods are of any use. “Lots of people are doing the dietary intervention,” Mills continues. “I would never advise anyone against doing anything that might be helpful. While there are parents who record improvement, there is very little scientific support. That’s not the same as saying it doesn’t work. We need to do the study.

“There are strong feelings on both sides of the divide. Supporters argue passionately that [such intervention] is helpful. In equal measure, people oppose them as being a waste of time or money, or say that autism is not an illness and therefore isn’t something that is curable anyway. It does attract polarised views.”

But Sienna’s parents’ views are unchanged. “We are grateful it has happened to us; even we are healthier as a result,” says Simone, who, like her daughter, has adjusted her diet to reduce its gluten content. “You appreciate going to one of Sienna’s friends’ birthday parties with more enthusiasm because Sienna now gets excited and wants to go. She doesn’t freak out when she sits on a swing, and those milestones are things to appreciate. Now, you can ask her what she did at school – and she can answer.”


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Monday, February 23, 2009

Kim Peek - The Real Rain Man - VIDEO -

The videos below shows you Kim Peek, an extraordinary individual with an exceptional memory. Kim Peek was born in 1951 and has a condition called Savant Syndrome. His condition causes him to have an extraordinary photographic memory, lack of social skills, and developmental disabilities.

He can read a page of a book in less than 10 seconds (about a book an hour) with his left eye reading the left page and his right eye reading the right page at the same time. Everything he reads he memorizes. He is literally a wealth of knowledge memorizing practically everything he comes across.

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Tobacco tax to launch kids' autism program

Posted on Monday, February 23, 2009

Lost in the debate over the $86 million cigarette and tobacco tax increase signed into law last week by Gov. Mike Beebe is a program the money would fund to help children with autism.

It would be one of 23 healthrelated programs benefiting from the tax, which also is to fund an expansion of ARKids First Medicaid health insurance for children, a statewide trauma system in emergency rooms, community health centers and a medical school in Northwest Arkansas.

The autism program's share would be $1.5 million a year.

Surgeon General Joe Thompson estimated it could serve about 100 children at any one time, with each needing between six months and three years of intensive treatment.

Thompson acknowledges the program won't meet the needs of all the children suffering from autism.

"The need is so great," said Leslie Henson-Kita of North Little Rock, mother of an autistic child. "But this is a really good starting place. If we prove the program works, hopefully more funding will become available."

Henson-Kita was the vicechairman of the Arkansas Legislative Task Force on Autism. She urged the creation of the task force and a law requiring the state to set up a Medicaid autism program - Act 1198 of 2007 by then-Rep. David Johnson, D-Little Rock, now a state senator - should funding become available.

In a 2007 survey, the University of Arkansas for Medical Sciences found that about one in 145 children had an autism spectrum disorder - the group of developmental disabilities characterized by inappropriate social behavior and difficulty communicating.

A spreadsheet put out by Beebe's office listing the programs funded by the tax increases doesn't include any federal Medicaid matching dollars for the autism program.

Thompson said the program hasn't been approved by the federal government so he didn't want to promise legislators specific funding levels from the federal government.

If approved, the state would be eligible for as little as a 50-50 match or as much as a 3-to-1 match, he said.

"I think with the money we can pay to have some experts come in and help us design the program and we can apply to the federal government to have a program in place similar to other states but tailored to our needs," Thompson said.

He estimated it would take six to nine months to get the program running.

He said "intensive therapy" for 3-, 4-, and 5-year-old children in other states has had "relatively good outcomes and decreased long-term needs."

If treated early, children with autism won't need as many services as they grow older, Thompson said.

Henson-Kita said her son, Collin, 5, was diagnosed with autism after she noticed him acting differently when he was 15 months old.

"He lost skills," she said. "He was starting to talk and then he just checked out and lost eye contact."

Henson-Kita, advertising manager for Arkansas Catholic newspaper, said she and her husband, an orthodontist, were able to pay for the intensive treatment their son needed, but it wasn't easy.

She said it costs between $30,000 and $75,000 a year.

"Most people in Arkansas don't have that money," she said. "We didn't either. My parents and in-laws were kind enough to start a college fund. I used his college money. My husband and I looked at each other and said if we don't spend this money on him now he may not need a college fund."

She looks to South Carolina as a model for what the Arkansas program could be. There is no maximum family income for eligibility and participants are chosen by a drawing, she said.

Henson-Kita paid a certified behavioral analyst to teach her how to provide the intensive therapy for her son.

"My son did improve, but we could only do 15 hours a week when 25 is what's recommended," she said. "He gained language skills. He was able to relate to us better. Most of these children have pretty severe language problems."

She called the treatment "applied behavioral analysis" and said it's different from typical speech therapy.

"It's a learning technique," Henson-Kita said. "It teaches them to take a task and process it and understand what you're asking for and they learn to respond. If your child is thirsty and wants a drink, and that child is nonverbal, he just sits on the floor and screams and you have to guess what the problem is. That's OK when the child is three months old, but not when they are three years old. They ought to be able to say, 'Juice, please.' [The treatment] breaks [communicating the need for drink] down in little bitty pieces so they can learn how to do it."

She said the services the state Medicaid program currently provides to autistic children are limited to the speech and occupational therapy and there is a sliding scale of co-payments depending on family income.

According to the federal Centers for Medicare and Medicaid Services, 10 states have Medicaid programs specifically designed for autism treatment. They are Indiana, Maryland, Wisconsin, Colorado, South Carolina, Maine, Massachusetts, Kansas, Pennsylvania, and Montana.

They served as few as 50 children in Kansas and as many as 3,000 people in Wisconsin.

Another goal of the autism task force is state-mandated insurance coverage of autism treatment.

There are eight states with such requirements according to the task force: Arizona, Florida, Indiana, Louisiana, Minnesota, Pennsylvania, South Carolina and Texas.

"What we're asking for is not unreasonable," Henson-Kita said.

She said in Indiana premiums increased by less than 1 percent as a result.

A bill for this legislative session is being worked on by Sen. Mary Anne Salmon, D-North Little Rock, and Rep. Gregg Reep, D-Warren, and the task force has asked Insurance Commissioner Jay Bradford for his support, Henson-Kita said.

"It's a heart-rending situation, and I have absolute understanding and great feelings for the people who are faced with this type of illness," Bradford said.

But he said he's hesitant to support a mandate on insurance companies because some autism treatments that seem to work for some patients haven't been proved widely effective.

Max Heuer, a spokesman for Arkansas Blue Cross and Blue Shield, said "employers and employees are struggling to maintain coverage" and any mandates would increase costs.


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COLUMN: 'Rules' is one 'R' word that is worth reading by all ages

By BILL LAIR, Managing Editor

I was late in joining the “Ready to Read ... Across Mattoon” program.

But I will be a regular now that I have participated for the last two years.

Last year’s book, “Shakespeare’s Secret,” was a good read. One of my favorite movies is “National Treasure,” the Nicolas Cage movie in which the characters follow historical clues to find treasure left by America’s founding fathers.

“Shakespeare’s Secret” offered similar clues to several kids as they looked for some jewelry in an old house.

This year’s book, “Rules,” also struck a personal note with me, but not in the same lighthearted way.

“Rules” is the story of a 12-year-old girl who has a brother with autism.

She tries to find her way through adolescence while living with a brother who poses challenges within the family and for his sister who wants a normal middle school life.

Several years ago, I wrote a column about being the best friend of a developmentally disabled boy named Bob who lived down the street when I was growing up.

I’m not proud of how I sometimes treated this boy, who was six years older than me, but wanted a friend to play with.

It wasn’t so bad, when I was in elementary school, to have a “retarded” friend. But once I got to junior high and high school, it wasn’t “cool” to hang out with Bob, the boy who was different from the kind of people I thought I needed to associate with.

Although “Rules” is about a girl dealing with an autistic brother, the book’s message is about how people, especially young people, treat others who are “different.”

It’s a great topic for all of us, regardless of our age.

I commend the Mattoon Middle School students who selected “Rules” for this year’s communitywide book.

In the book, the main character, a girl named Catherine, has a hard enough time fitting in with other kids and dealing with her autistic brother, and then she meets a boy named Jason, who has a disability of his own.

Catherine doesn’t think her friends will accept her if they see her with Jason, so she will have to decide what is important in her life.

Choosing friends is is a decision we all have to make, sometimes several times throughout our lives.

While I was reading “Rules,” I also saw an article in another newspaper in the Lee Enterprises company.

The headline read: “Students take a stand on ‘R word.’”

High school students in Mason City, Iowa, produced a video explaining why the word “retard” can be offensive.

A student named Meredith Angell narrated the five-minute video. She is president of the school’s Best Buddies chapter. She said she wanted to do something to raise awareness about how language can hurt feelings and destroy confidence of those with special needs.

“I wanted to show that all kids are the same, that we have common interests,” she said.

Best Buddies brings together special needs students with students from the general student population. Teens forge friendships and build awareness of the challenges special needs students face.

Several Best Buddies students worked on the video, which calls on teachers, cheerleaders, the basketball team, administrators, music department — even the Academic Decathlon team — to show their support for banning the word when used in a disparaging way.

“They’re already starting to say, ‘Ban the R word’ when they hear it in the hallway,” Angell said of her fellow students.

When I was a boy, people with disabilities, such as my neighbor Bob, were called “retarded.”

That word is no longer acceptable.

Mason City special ed teacher Becky Kyhl praised the students on their initiative, which follows a national and international “R” word campaign.

“It’s a great extension of what is being done at those levels — and to have this being done locally, well, we are so proud of them.”

“I think more than anything, that this project is about creating awareness,” one of the Best Buddies video participants said. “We want to see these kids as equals, creating friendships — regardless of their needs or differences.”

That same theme comes through in “Rules.”

Whether someone has autism, needs a wheelchair, is developmentally disabled, is hearing or visually impaired or has some other disability, they all are people.

Their bodies are changing, they want to fit in, just like any middle school and high school student, such as Catherine.

In this area, Eastern Illinois Area Special Education works with about 5,500 “special needs’ school-age children in the eight-county area.

I encourage you to read “Rules.” Copies are available. If you don’t know where to get one, contact Anieta Trame at Mattoon Middle School,

There are two lines in “Rules” that I especially liked:

“Sometimes you’ve gotta work with what you’ve got,” which is one of Catherine’s rules.

And my favorite: “How can his outside look so normal and his inside be so broken? Like an apple, red perfect on the outside, but mushy brown at the first bite.”

Now that’s a description that could apply to a lot of us.


Cynthia Lord's Website:

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Autism treatment needs are great in Roaring Fork Valley

by by Catherine Lutz, Aspen Daily News Staff Writer
Monday, February 23, 2009

After some coaxing and a mumbled, rushed speech about who he is and what he likes, 21-year-old Bill Bernard of Aspen concluded, softly but clearly, “I don’t like to feel panic.”

Bernard, who has an autism spectrum disorder, was the first person to testify at an Aspen hearing of the Colorado Autism Commission on Thursday. He was one of 10 people who attended the first of several hearings the governor-appointed commission was holding in various mountain towns.

Given the alarming rise of autism nationally and locally (one in 150 people in Colorado, up from one in 2,000 a few years ago), parents and educators decried the lack of autism-specific services, funding and training for caregivers in the Roaring Fork Valley. Even fewer options exist for adults with autism, like Bernard, who lives at home with his parents and must travel to see his three doctors.

There is no job coaching, no housing opportunities, no transition programs and no facilities in Colorado for adults with autism, said Diane Osaki, a Denver-based autism treatment provider, referencing the testimony of Bill’s mother, Sallie Bernard. And Colorado Medicaid limits autism coverage for those under 20 years old, and doesn’t even cover Asperger’s syndrome, which is on the mild end of the autism spectrum.

Members of the Colorado Autism Commission, which was formed last year, are touring the state to get input about gaps in services, suggestions and “what’s really going on,” said Commissioner Barry Jackson. The commission is charged with crafting a 10-year plan by Oct. 1 partially based on the testimony, which is required to come in written form from anybody who testifies orally.

Osaki, an occupational therapist, said she spends about one-and-a-half weeks per month working with families in the Roaring Fork Valley, and the need is growing such that she is bringing other specialists up. One special education teacher in the Aspen School District, who moved here two years ago from St. Louis, said that she “feels like I’m more knowledgeable than anyone in the district” when it comes to autism. She said that in St. Louis she had the support of consultants and professionals, but that in Aspen she is on her own to get a program started in the schools.

Parents testifying at Thursday’s hearing said that they are the ones primarily crafting programs and adjusting therapies for their children. And while that somewhat comes with the territory, since autism manifests itself differently in each child — hence the “spectrum” of developmental disorders that autism encompasses — that can make it kind of tough on the family.

“I see a huge area of need and I don’t know what services are working,” said Rylie Trueman, who is pursuing a costly, private home therapy for her 4-year-old son. People who work with him are all very well intentioned she said, but it’s difficult to find therapists trained in autism. “I feel a lot of them don’t get my son.”

One local agency even told Trueman that there are no services for children from 3-14 years old.

Osaki and others suggested to the commission that the valley could benefit greatly from increased training for providers, particularly with technology like Web and video conferencing. Distance technology could also help doctors and other remote therapists stay in better touch with their local patients.

Jill Pidcock, mother of a 5 1/2-year-old who also works with severe needs kids in the Roaring Fork School District, said “a lot of things are working in my world,” but “I felt at a loss coming to this valley.”

Pidcock and her family moved from Evergreen, Colo. in June, and she bought into the stereotype that Aspen would be progressive in such things as autism treatment.

While that isn’t quite the case, Pidcock optimistically believes a lot of local issues can be resolved by more communication and better relationships between parents, educators and caregivers. Heather Abraham, director of special education for the Aspen School District, also talked about Colorado’s “cumbersome” system, where evaluation and treatment fall to different agencies, leaving “an opportunity for services to fall through the cracks.”

Pidcock wants to create a parent liaison position in her school district — which she was told the district cannot afford — “to create synergy instead of splintered relationships. I believe we can do a lot with relationships.”

Funding is also a major issue, according to those who testified, both for the families and the service providers. Insurance policies don’t cover much, and school districts are limited in the autism-specific programs they can provide. Pidcock said she can’t afford private therapies, so her son must rely on the limited school programs, which she is fortunate to be able to monitor because she works for the district.

Even if more training was offered to local caregivers, Pidcock pointed out, educators, who tend to work long hours for low pay, would need some kind of incentive to take the training.

Mountain BOCES, an organization that provides services including but not limited to special education, has an autism coach who covers 10 school districts.

Complicating matters is when an autistic person also has behavioral issues, which is not uncommon, and is denied care at a hospital, which is also not uncommon, said Osaki.

“If they need to be served there’s nowhere to go,” she said. “It’s probably some of the scariest times I’ve spent with families to try to know what to do.”

People with autism have neurological disconnections that cause developmental disabilities and most take more time and effort to learn a task or activity. They also tend to have higher levels of anxiety and fear, and can easily get stressed out but may not know how to properly express their frustrations.

Pidcock summarized what parents are dealing with when she said that “the majority of us are trying to get our child to sleep through the night, or dealing with a meltdown in the grocery store. We have to force all things out of our lives when we’re having ‘an autism moment’, and you never know when that’s going to be.”

Colorado, which prides itself on its physically active population and embraces the independent Western ethic, “should declare autism a national health emergency. Ours should be a model for other states,” said Osaki, reading Sallie Bernard’s testimony.


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Sunday, February 22, 2009

Extreme Makeover Home Edition - O'Donnell Family

Aired - February 18th, 2007

Five out of six of the O'Donnell children have been diagnosed with autism. The father, Patrick is having trouble trying to make ends meet with such a big family with special needs, so they are unfortunately facing foreclosure. Before they lose their home, Ty and the team are going to make sure they have a secure home built which also accommodates their children's needs.

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Part 5/5 :

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Autism: How Childhood Vaccines Became Villains

Sharon Begley
From the magazine issue dated Mar 2, 2009

Like many people in London on that bleak February day in 1998, biochemist Nicholas Chadwick was eager to hear what the scientists would say. The Royal Free Hospital, where he was a graduate student in the lab of gastroenterologist Andrew Wakefield, had called a press conference to unveil the results of a new study. With flashbulbs popping, Wakefield stepped up to the bank of microphones: he and his colleagues, he said, had discovered a new syndrome that they believed was triggered by the MMR (measles, mumps, rubella) vaccine. In eight of the 12 children in their study, being published that day in the respected journal The Lancet, they had found severe intestinal inflammation, with the symptoms striking six days, on average, after the children received the MMR. But hospitals don't hold elaborate press conferences for studies of gut problems. The reason for all the hoopla was that nine of the children in the study also had autism, and the tragic disease had seized them between one and 14 days after their MMR jab. The vaccine, Wakefield suggested, had damaged the intestine—in particular, the measles part had caused serious inflammation—allowing harmful proteins to leak from the gut into the bloodstream and from there to the brain, where they damaged neurons in a way that triggered autism. Although in their paper the scientists noted that "we did not prove an association" between the MMR and autism, Wakefield was adamant. "It's a moral issue for me," he said, "and I can't support the continued use of [the MMR] until this issue has been resolved."

That's strange, thought Chadwick. For months he had been extracting genetic material from children's gut biopsies, looking for evidence of measles from the MMR. That was the crucial first link in the chain of argument connecting the MMR to autism: the measles virus infects the gut, causing inflammation and leakage, then gut leakage lets neurotoxic compounds into the blood and brain. Yet Chadwick kept coming up empty-handed. "There were a few cases of false positives, [but] essentially all the samples tested were negative," he later told a judicial hearing. When he explained the negative results, he told NEWSWEEK, Wakefield "tended to shrug his shoulders. Even in lab meetings he would only talk about data that supported his hypothesis. Once he had his theory, he stuck to it no matter what." Chadwick was more disappointed than upset, figuring little would come from the Lancet study. "Not many people thought [Wakefield] would be taken that seriously," Chadwick recalls. "We thought most people would see the Lancet paper for what it was—a very preliminary collection of [only 12] case reports. How wrong we were."

The next day, headlines in the British press screamed, DOCTORS LINK AUTISM TO MMR VACCINE AND BAN THREE-IN-ONE JAB, URGE DOCTORS AFTER NEW FEARS. That was mild compared with what followed. Hysteria over childhood vaccinations built to such a crescendo that Wakefield's nuanced warning—that it was specifically the triple vaccine, not single-disease vaccines (even measles), that posed a threat—was drowned out. In 2001, Prime Minister Tony Blair and his wife, Cherie, refused to say whether their son, then 19 months old, had received the MMR; rumors swirled that they had gone to France so the child could receive the measles vaccine alone. In 2003, a docudrama about Wakefield ran on British TV, depicting him as having his files stolen and his phone tapped by evil pharmaceutical companies intent on protecting their vaccines. As one reviewer described the show: "The MMR vaccine is coming to get our kids."

The MMR vaccine is the same on both sides of the Atlantic, so fears of childhood vaccines (of which U.S. health officials recommend 35 by age 6) started a backlash in the United States, too, fueled in no small part by the fact that the incidence of autism was rising for reasons scientists could not fully explain. In California, for instance, the incidence of autism had risen from 6.2 per 10,000 births in 1990 to 42.5 in 2001. Groups of parents began refusing vaccines for their children. Within a few years of Wakefield's announcement, rates of MMR vaccinations in Britain fell from 92 percent to below 80 percent. Although there was no comparable nationwide decrease in the United States, pockets of resistance to vaccination appeared throughout the country, laying the groundwork for a sevenfold increase in measles outbreaks. Looking back from the perspective of 11 years, the panic seems both inevitable and inexplicable. Inevitable, because legitimate scientists publishing in respected journals produced evidence of a link between vaccines and autism, and because the press as well as politicians and even public-health officials stoked the mounting hysteria. Inexplicable because, by the early 2000s, scientific support for that link had evaporated as completely as the red dot on a baby's vaccinated thigh.

Scientists and government officials who defended the safety of childhood vaccines were not shy about attributing the fears to the science illiteracy of the public and the fearmongering of the press. In truth, however, after Wakefield's announcement there was a steady drumbeat of studies—not from kooks in basement labs but from real scientists working at real institutions and publishing in real, peer-reviewed journals—that backed him up. In 2002, pathologist John O'Leary of Coombe Women's Hospital in Dublin reported that he had found RNA from the measles virus in 7 percent of normal children—but in 82 percent of those with autism, suggesting that some children are unable to clear the vaccinated virus from their systems, resulting in autism. That same year, a Utah State University biologist reported finding high levels of antibodies against the measles virus in the blood and spinal fluid of autistic children; the MMR, he postulated, had triggered a hyperimmune response that attacked the children's brains. In 2003, gastroenterologist Arthur Krigsman, then at New York University School of Medicine, reported finding what Wakefield had: that the guts of 40 autistic children were severely inflamed, lending support to the idea that leaks allowed pernicious compounds to make a beeline for the brain.

But these studies and others supporting the link between autism and the MMR were nothing compared with an extraordinary step that had been taken by the U.S. government and by one of the country's leading medical organizations. On July 7, 1999, the American Academy of Pediatrics (AAP) and the U.S. Public Health Service issued a warning about the preservative in many vaccines. Called thimerosal, it contains 49.6 percent ethylmercury by weight and had been used in vaccines since the 1930s, including the diphtheria/tetanus/pertussis (DTP) and Haemophilus influenzae (Hib) vaccines (but not the MMR). The experts tried to be reassuring, saying in a statement there are "no data or evidence of any harm" from thimerosal. But, they continued, children's cumulative exposure to mercury from vaccines "exceeds one of the federal safety guidelines" for mercury. (By 2003, most childhood vaccines did not contain thimerosal, though flu vaccines still did.) The AAP statement did not mention autism.

But on April 6, 2000, Rep. Dan Burton did. Burton had previously distinguished himself by his support for laetrile, the quack cancer remedy. Now he was chairing a congressional hearing on the link between vaccines and autism. His own grandson, Burton told an overflow audience filled with antivaccine activists, was perfectly normal until he received "nine shots on one day," after which he "quit speaking, ran around banging his head against the wall, screaming and hollering and waving his hands." Witnesses testified about their own tragedies, such as a child's "journey into silence" soon after receiving the MMR vaccine. Wakefield, too, testified. Since his Lancet paper, he said, he had studied scores more children, identifying almost 150 in whom MMR had triggered autism. O'Leary, the Irish scientist who had confirmed Wakefield's finding of measles virus in the guts of children with autism, pronounced himself "here to say that Wakefield's hypothesis is correct." Now there were two explosive theories about the dangers of childhood vaccines: Wakefield's, that the MMR caused gut inflammation and the release of autism-causing proteins into the blood and brain, and the thimerosal theory, that the mercury in childhood vaccines damages the immune system and, possibly, the brain.

Burton's hearing was widely covered in the press, but the attention was nothing compared with the flood of stories that were about to be unleashed. That November "60 Minutes" aired a segment featuring children who "appeared normal" until getting the MMR. On Nov. 10, 2002, The New York Times Magazine ran an article on "The Not-So-Crackpot Autism Theory," about thimerosal. It included news of an August 2002 study by the father-and-son team Mark and David Geier, who combed a federal database of reported "adverse events" after vaccinations. They found "increases in the incidence of autism" after children got thimerosal-containing vaccines compared with thimerosal-free vaccines. The following spring, the Geiers published another study: the more mercury in their vaccines, the more likely children were to develop autism.

By this time, mistrust of the scientific establishment—and of anyone defending vaccines—had mushroomed into something decidedly uglier. When pediatrician Paul Offit, a vaccine expert at the Children's Hospital of Philadelphia, testified before Burton's panel, he said that he had had his own children vaccinated, and gave their names. At a break, a congressional staffer pulled him aside and said, "Never, never mention the names of your own children in front of a group like this." The following year he received an e-mail threatening to "hang you by your neck until you are dead." The FBI deemed it credible and assigned him an armed guard during vaccine meetings at the U.S. Centers for Disease Control and Prevention.

The first cracks in the vaccine theories of autism appeared in early 2004. An investigation by British journalist Brian Deer in The Sunday Times of London revealed that the children Wakefield described in the Lancet study had not simply arrived on the doorstep of the Royal Free. At least five were clients of an attorney who was working on a case against vaccine makers alleging that the MMR caused the children's autism. In addition, two years before the Lancet paper Wakefield had received £55,000 from Britain's Legal Aid Board, which supports research related to lawsuits. After meeting with Deer, Lancet editor Richard Horton told the British press, "If we knew then what we know now, we certainly would not have published the part of the paper that related to MMR … There were fatal conflicts of interest." On March 6, 10 of Wakefield's 12 coauthors formally retracted the paper's suggestion that the MMR and autism were linked.

Wakefield did not join them. Now executive director of a Texas nonprofit called Thoughtful House, which offers treatments for autism, he admits he was retained and paid by the lawyer for the parents of autistic children but denies that posed a conflict of interest. "At the time the children were referred to the Royal Free, none of the parents were involved in litigation, though some went on to do so," he says. The legal board's payment supported other vaccine-autism research he was conducting, Wakefield says, not that in the Lancet paper. "I will not be deterred from continuing to look after these children and research their problems," says Wakefield.

In 2005 Britain's General Medical Council, which licenses physicians, began a hearing in which Wakefield was charged with professional misconduct for, among other things, the alleged financial conflict of interest in the Lancet study. The investigation has since expanded, with new charges by journalist Deer that Wakefield or his coauthors misrepresented the children's medical records. In particular, Deer reported that the children's gut and autism symptoms appeared long before their MMR rather than, as the 1998 Lancet study reported, right after. Wakefield denies doing anything improper, saying he "merely entered the documented findings into the Lancet paper."

The charges against Wakefield were the least of what was undermining the vaccine theory of autism. What would eventually become an overwhelming body of evidence showing that childhood vaccines did not increase the risk of autism began to pile up. In 2002 scientists led by Brent Taylor of the Royal Free reported that their study of 473 children had found no difference in the rates of autism between those who had received the MMR and those who had not, providing "further evidence against involvement of MMR vaccine in the initiation of autism," they wrote. Scientists in Finland, studying 2 million children, reached the same conclusion in a 2000 paper. So did scientists at Boston University, studying the medical records of 3 million children, in 2001. In 2004 a study of the medical records of 14,000 children in Britain found that the more thimerosal the children had been exposed to through vaccines, the less likely they were to have neurological problems. Also that year, the Institute of Medicine (IOM) in the United States, having reviewed 200-plus studies, rejected the vaccine-autism hypothesis. Not only did it find no evidence of a link—and, indeed, evidence against the existence of a link—but it took aim at the original 1998 Lancet paper by Wakefield's group. Because autism symptoms typically appear at the same age that children get the MMR, the panel said, it was inevitable that some children would first show symptoms of autism soon after being vaccinated. Coincidence is not causality.

If the IOM panel thought that would be the end of it, they were naive. From the halls of Congress to the airwaves to the pages of leading newspapers, true believers went at the vaccine-autism link more passionately than ever. After the IOM released its report, Rep. Dave Weldon of Florida, a physician, took to the House floor to denounce the CDC for its vaccine-autism research. The agency, Weldon charged, was guilty of "selective use of the data to make the associations [between vaccines and autism] disappear" and had engaged in "a public-relations campaign [on behalf of vaccines] rather than sound science."

The following year, a story by environmental lawyer Robert F. Kennedy Jr. called "Deadly Immunity" made the case against thimerosal in Rolling Stone. Activists used large chunks of the money they were raising from terrified parents to spread their message. On June 8, a full-page ad for Generation Rescue, which had been founded the month before to push the thimerosal theory, ran in The New York Times, proclaiming, "Mercury Poisoning and Autism: It Isn't a Coincidence." It included quotes from several politicians, with Burton stressing research that "indicated a direct link between exposure to mercury and autism," and Sen. John Kerry saying "mercury has been linked to autism." Later that year, a book titled "Evidence of Harm: Mercury in Vaccines and the Autism Epidemic," by journalist David Kirby, got huge attention in the media. Kirby appeared on "Imus in the Morning" several times, as did politicians supporting his thesis. Sen. Joseph Lieberman, citing the growing incidence of autism coupled with the increase in the number of required vaccines, said, "Make sure your kids are getting vaccines without thimerosal."

Throughout this saga, the "vaccines cause autism" side could claim more powerful persuaders than the dry-as-dust scientific papers and even drier scientists trying to reassure parents. On Sept. 18, 2007, model and actress Jenny McCarthy appeared on "The Oprah Winfrey Show" to promote her new book, "Louder Than Words," in which she describes curing her son Evan's autism—which she blames on the MMR—with diet and chelation, a process that chemically binds heavy compounds in the body so they can be excreted. Asked about the CDC statement that science does not link vaccines to autism, McCarthy said, "My science is Evan." Researchers were dumbfounded that so many parents rejected the conclusions of the CDC, the Institute of Medicine and the American Academy of Pediatrics (which after its thimerosal debacle had put itself foursquare behind childhood vaccines). "The issue for people like Jenny McCarthy isn't that doctors and scientists and public-health officials haven't listened to parents," writes Paul Offit in his 2008 book "Autism's False Prophets: Bad Science, Risky Medicine and the Search for a Cure." "It's that they've been unable to find any evidence to validate parents' concern."

The anti-vaccine campaign was having an effect. As parents postponed vaccinating their children, or refused vaccines entirely, children were suddenly catching preventable diseases, and some were dying. The number of measles cases in the United States reached 131 in 2008, the highest in decades. Last month five children in Minnesota became infected with Hib. Four developed serious complications; the fifth child died. Other parents, believing that yanking mercury out would cure a child's autism, opted for chelation. Unfortunately, it can pull out vital metals such as iron and calcium as well as toxic mercury and lead.

An overwhelming majority of vaccine and autism experts were convinced that parents were putting their children at real risk over a phantom fear. But perhaps no one understood that the MMR theory, in particular, was a house of cards better than molecular biologist Stephen Bustin of the University of London. In 2004 the U.K. High Court asked him to inspect the Dublin lab that had reported measles genes in the guts of autistic children right after they received the MMR, an important confirmation of Wakefield's theory. It was an uncomfortable situation, Bustin recalls, playing cop at another scientist's lab. But he discovered a number of problems. The genetic material the lab had found was DNA, but measles genes are made of RNA. The equipment was so poorly calibrated that its results depended on where in the machine the sample was placed. Wakefield defends his collaborator, saying that a later test confirmed "the fidelity and high quality of [the Dublin lab's] methods … The original results that found measles virus genetic material in intestinal biopsies in 75 percent of the autistic children compared with 6 percent of the nonautistic controls still stand."

Under U.S. law, families who believe their child has been injured by a vaccine have their claims heard by a special "vaccine court." Since 1999 some 5,000 families had filed claims asserting that vaccines caused their child's autism. That is too many to try individually, so in 2004 they were combined into three test cases. One would represent the claim that MMR caused the children's autism, one that thimerosal in vaccines other than MMR did and one that the combination did. The last theory was tested with the case of Michelle Cedillo, a 12-year-old with severe autism; hearings began on June 11, 2007. Before it was over, the evidence would include 939 papers from journals and textbooks and testimony running thousands of pages. One of those testifying was Bustin, who explained that the finding of measles genes in autistic children rested on shoddy science. "Normally it hardly matters when a scientific paper gets it wrong," Bustin says. "But in this case, it matters a great deal."

On Feb. 12 Special Master George Hastings Jr. announced his decision in the Cedillo case. Every study conducted to test Wakefield's MMR hypothesis, he concluded, "found no evidence that the MMR vaccination is associated with autism." And the evidence "falls far short" of showing a thimerosal connection.

That is hardly the end of the legal cases. All three sets of parents in the test cases say they will take their claims against the manufacturers to civil court, hoping to convince juries—through the emotional power of tragically damaged children—of what they failed to prove to the vaccine court. And if those cases, too, absolve vaccines? In postings on antivaccine sites such as and, parents have made clear that they think the system is rigged and that vaccines condemned their children to a lifetime of being barricaded behind the impregnable wall of autism. Perhaps it should not be a mystery why people refuse to believe science, with its tentative hypotheses, zigzag pathway to finding answers and a record of getting some things wrong before getting them right (see hormone-replacement therapy). On the day the court announced its decision, Offit pointed out that "tens of millions of dollars have been spent trying to answer these questions [about vaccines and autism]," but many people "refuse to believe the science." Perhaps, he mused, that's "because while it's very easy to scare people, it's very hard to unscare them."

And it's impossible to prove a negative such as "vaccines do not cause autism." The slim hope of finding a link—perhaps only children with specific genetic variants are at risk of developing autism as a result of vaccines; perhaps the vaccine is dangerous only in combination with other environmental triggers—keeps activists at the barricades. (They received some support in 2007, when the federal government settled the case of Hannah Poling, admitting that a vaccine had exacerbated a rare underlying cellular disorder and, as a result, brought on autistic symptoms.) Wakefield, unrepentant, slams the vaccine-court decision for "not being based on any definitive science." One powerful advocacy group, Autism Speaks, said after the decision that it will continue to support research into whether certain children with "underlying medical or genetic conditions may be more vulnerable to adverse effects of vaccines." Chief science officer Geraldine Dawson says they "owe it to the parents to listen and address their concerns. We don't want to close the door." Not even a door that, since it was opened 11 years ago this month, has let through such demons. It is bad enough that the vaccine-autism scare has undermined one of the greatest successes of preventive medicine and terrified many new parents. Most tragic of all, it has diverted attention and millions of dollars away from finding the true causes and treatments of a cruel disease.


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