TACA holds monthly meetings in many locations throughout the United States that feature educational speakers on important topics and allow family members to connect with one another and stay on top of the latest information in the autism world. Each TACA group maintains a resource library of the latest autism books and tapes that can be checked out by members at no charge.

Check out our group listings: each contains information on TACA meetings and special events as well as a contact form.

Are you wondering what happens at a TACA meeting? Watch our video.

As TACA's founder and executive director, words cannot express my gratitude for your help with the TACA Family and Friends campaign.  I know how busy you are and the fact that you took time and made the effort is greatly appreciated. Your hard work has made this 5th annual TACA Family & Friend's campaign our most successful to date, raising over 25% more than in 2008 - and all in a down economy!

While thanking you, I could not help but reflect on this campaign and its original purpose. The TACA Family and Friends campaign came about from all the families and relatives who said "how can I help."

For over nine years, I have always been reluctant to tell families that need TACA how they can help us. Families affected by autism are tremendously busy and challenged every day.   Our goal is to have TACA there for you when you need us.

This campaign was also created to put a face on autism, share stories and build communities in family's back yards by reaching out and getting help for the group that supports them. TACA's mission and efforts are grass roots.  Besides supporting families - awareness about autism is a crucial part of what we want to accomplish. Autism is anything but easy and educating more or your family and friends about the impact of autism is crucially needed.  Maybe during the past few months more of your friends and coworkers asked about your child affected by autism, knew more about the cause and what TACA does to help. Now your community of support may be a little stronger as a result of helping TACA.

Where do the funds from the Family & Friends campaign go? They go to help families living with autism just like yours. TACA has grown from 6,500 to more than 14,000 families in the last year, and our mission is more critical than ever.

Your help - from the TOP FUNDRAISER to the family who raised $25 from neighbors means so much to TACA and to me personally.  I was deeply touched as I read each of your personal stories on your web sites and saw the photos of your beautiful children and families.   I am grateful for each donation made in honor of a child that is loved.

Last area of business - to thank you for your help! The acknowledgement of your efforts will be according the incentives defined in our Firstgiving page. We will be sending you a follow up email on the small way of saying thank you for your hard work.

Together we can make a difference for all the TACA families - including yours. I truly appreciate your support and wanted you to know your help is greatly appreciated.

Thank you,
Lisa Ackerman

GFCFSF in 10 weeks

How to read food labels

Toxins in Foods & the Environment– Things That Should Be Avoided For ASD Kids

What is gluten?
What is Casein?
What is Soy

Teacher Handout (updated to remove soy and per federal law)

Defending the GFCFSF diet

Seasonal cooking (using fruits and veggies that are abundant in season)

Enjoy! Holly Bortfeld

For daily updates to all autism legislative issues: ChangeforAutism.org

But instead, parents, district employees, government workers and lawmakers all tell us they're being abused and the school district has done little to stop it.

Our story begins with a 7-year-old autistic boy named Gus Lapin.

"Why do you eat?" Gus' home aide asks him

He looks into space for a moment to think.

"I eat because I'm hungry!" he says excitedly, figuring out the expected answer.

That simple fact... a child eating, or in this case, not wanting to eat, is at the heart of an abuse lawsuit against the Clark County School District and special education teacher Lindsay Schoener.

"She said could you come inside because I think Gus is sick. He's been vomiting. So I went inside and indeed there was vomit in various places throughout the classroom and I asked her what happened and she said I don't know, I think he just probably doesn't feel well," remembers Courtney Lapin, Gus' mother.

Because young kids often get sick, so Courtney wasn't too worried.

That is until she got a call from the Staton Elementary school principal the next day.

"According to the principal, the police were at the school and that I should come to the school to get Gus."

At that point, Courtney knew something bad had happened, but no one was telling her anything.

"I was terrified. Terrified! When you send a child to school who can't come home and tell you what happened to him that day, it adds another level to your fear. It was devastating."

Months went by and no one at the school told Courtney and her husband what happened to Gus.

In fact, details only came after the family hired a lawyer to force the District to release the police report documenting the incident.

According to the report, Gus, who was five years old at the time, didn't want to eat the turkey in his lunch.

So the teacher intervened.

She reportedly told her aides, "Bear with me. This is not going to be pleasant."

She then sat behind Gus, pulled his head backwards against her chest and ordered him to open his mouth.

"And the whole time he was protesting. He was saying no turkey, no turkey!" Courtney learned from the police report.

The crime report goes on to say Mrs. Schoener clamped on his head, pinched off his nose, and when Gus opened his mouth to breathe, she dropped the turkey in and covered his mouth so he couldn't spit it out.

"His hands and his legs were flailing about. He was gagging and choking," Courtney read in the report.

The report shows that teacher force-fed Gus until he vomited repeatedly in front of all the other children.

"It just exceeds all bounds of decency and is outrageous conduct, particularly for a School District employee," says the family's attorney, Robert Kilby.

"And in a classroom where these kids need extra care and patience and understanding, to know that there's someone in the classroom who would do this over something so small, it's shocking," Courtney says.

The classroom aides reportedly tried to stop Mrs. Schoener, to no avail.

The aides reported the incident to the principal and school police, saying they were "mortified" by the teacher's conduct, and suggesting the school "place a hidden camera in Mrs. Schoener's classroom and then people would be shocked over her behavior."

Nevada law says physical restraint may not be used on a pupil with a disability unless there's an immediate threat of physical injury to students or staff, or to protect against severe property damage.

All instances must be documented and reported to the school district and the parents.

Courtney believes that "unless someone had come forward, we wouldn't have known what happened. We never would have known."

School police submitted their report to the District Attorney for the crime of child abuse.

"The Clark County School District Police Department did request for a warrant to be issued for Ms. Schoener's arrest," Kilby explains.

But that didn't happen.

Lindsey Schoener was never prosecuted and she's still teaching special needs students at Staton Elementary.

Contact 13 has been told that her disciplinary action consisted of watching a training video.

"If that's all that was done, I probably would not think that was reasonable," says Assembly Speaker Barbara Buckley, who works for Southern Nevada Legal Aid Center.

She often represents children with special needs and feels that any school teacher who did what Schoener is accused of should be terminated.

"Child won't eat... special needs... never take it upon yourself to force food down the child's mouth! Ever!" Buckley says.

She's puzzled by the fact that it took the Lapin family so long to learn what happened to their son.

"What message is that sending to these vulnerable families?" Darcy Spears asked.

"I think it's a really bad approach. I think that what it does is it infuriates the parents and it gets them angrier and angrier and what they will do is look toward litigation," Buckley answered.

The School District wouldn't talk about the incident with Gus and how they handled it.

They say pending litigation, unresolved personnel issues and confidential student information are not appropriate interview topics for district personnel.

For now, Gus Lapin is being home-schooled... the only place his parents feel he can learn and be safe.

Abuse allegations involving special needs students have been levied at the School District for more than a decade.

Contact 13 found a previous case involving a 10-year-old special needs student where a teacher and assistant held the boy's hands behind his back and force fed him oatmeal--which they knew he was allergic to--mixed with his own vomit.

He was also strangled so he would run faster despite a physical deformity in his feet and legs, pinned to the ground, and squirted with water if he couldn't stay on task.

The District fought that case starting in 1998 and eventually settled out of court.

But to this day, dozens of violations involving special needs students are still recorded every year.

California's sevenfold increase in autism cannot be explained by changes in doctors' diagnoses and most likely is due to environmental exposures, University of California scientists reported Thursday.

The scientists who authored the new study advocate a nationwide shift in autism research to focus on an array of potential factors in the environment that babies and fetuses are exposed to, including pesticides, viruses and chemicals in household products.

"It's time to start looking for the environmental culprits responsible for the remarkable increase in the rate of autism in California," said Irva Hertz-Picciotto, an epidemiology professor at University of California, Davis who led the study.

Throughout the nation, the numbers of autistic children have increased dramatically over the past 15 years. Autistic children have problems communicating and interacting socially; the symptoms usually are evident by the time the child is a toddler.

More than 3,000 new cases of autism were reported in California in 2006, compared with 205 in 1990. In 1990, 6.2 of every 10,000 children born in the state were diagnosed with autism by the age of five, compared with 42.5 in 10,000 born in 2001, according to the study, published in the journal Epidemiology. The numbers have continued to rise since then.

To nail down the causes, scientists must unravel a mystery: What in the environment has changed since the early 1990s that could account for such an enormous rise in the brain disorder?

For years, many medical officials have suspected that the trend is artificial -- due to changes in diagnoses or migration patterns rather than a real rise in the disorder.

But the new study concludes that those factors cannot explain most of the increase in autism.

Hertz-Picciotto and Lora Delwiche of the UC Davis Department of Public Health Sciences analyzed 17 years of state data that tracks developmental disabilities, and used birth records and Census Bureau data to calculate the rate of autism and age of diagnosis.

The results: Migration to the state had no effect. And changes in how and when doctors diagnose the disorder and when state officials report it can explain less than half of the increase.

Dr. Bernard Weiss, a professor of environmental medicine and pediatrics at the University of Rochester Medical Center who was not involved in the new research, said the autism rate reported in the study "seems astonishing." He agreed that environmental causes should be getting more attention.

The California researchers concluded that doctors are diagnosing autism at a younger age because of increased awareness. But that change is responsible for only about a 24% increase in children reported to be autistic by the age of five, according to the report.

"A shift toward younger age at diagnosis was clear but not huge," the report says.

Also, a shift in doctors diagnosing milder cases explains another 56% increase. And changes in state reporting of the disorder could account for around a 120% increase.

Combined, Hertz-Picciotto said those factors "don't get us close" to the 600% to 700% increase in diagnosed cases.

That means the rest is unexplained and likely caused by something that pregnant women or infants are exposed to, or a combination of genetic and environmental factors.

"There's genetics and there's environment. And genetics don't change in such short periods of time," Hertz-Picciotto, a researcher at UC Davis' M.I.N.D. Institute, a leading autism research facility, said in an interview Thursday.

Many researchers have theorized that a pregnant woman's exposure to chemical pollutants, particularly metals and pesticides, could be altering a developing baby's brain structure, triggering autism.

Many parent groups believe that childhood vaccines are responsible because they contained thimerosal, a mercury compound used as a preservative. But thimerosal was removed from most vaccines in 1999, and autism rates are still rising.

Dozens of chemicals in the environment are neurodevelopmental toxins, which means they alter how the brain grows. Mercury, polychlorinated biphenyls, lead, brominated flame retardants and pesticides are examples. While exposure to some -- such as PCBs -- has declined in recent decades, others -- including flame retardants used in furniture and electronics, and pyrethroid insecticides -- have increased.

Household products such as antibacterial soaps also could have ingredients that harm the brain by changing immune systems, Hertz-Picciotto said.

In addition, fetuses and infants might be exposed to a fairly new infectious microbe, such as a virus or bacterium, that could be altering the immune system or brain structure. In the 1970s, autism rates increased due to the rubella virus.

The culprits, Hertz-Picciotto said, could be "in the microbial world and in the chemical world."

"I don't think there's going to be one smoking gun in this autism problem," she said. "It's such a big world out there and we know so little at this point."

But she added, scientists expect to develop "quite a few leads in a year or so."

The UC Davis researchers have been studying autistic children's exposure to flame retardants and pesticides to see if there is a connection. The results have not yet been published.

"If we're going to stop the rise in autism in California, we need to keep these studies going and expand them to the extent possible," Hertz-Picciotto said.

Funding for studying genetic causes of autism is 10 to 20 times higher than funding for environmental causes, she said. "It's very off-balance," she said.

Weiss agreed, saying that "excessive emphasis has been placed on genetics as a cause. "The advances in molecular genetics have tended to obscure the principle that genes are always acting in and on a particular environment. This article, I think, will restore some balance to our thinking," he said.

Some issues related to whether the increase is merely a reporting artifact remain unresolved. There could be other, unknown issues involving diagnosis and reporting, scientists say.

The surge in autism is similar to the rise in childhood asthma, which has reached epidemic proportions for unexplained reasons. Medical officials originally thought that, too, might be due to increased reporting of the disease, but now they acknowledge that many more children are asthmatic than in the past. Experts suspect that environmental pollutants or immune changes could be responsible.

Autism has serious effects, not just on an individual child's health but on education, health care and the economy.

"Autism incidence in California shows no sign yet of plateauing," Hertz-Picciotto and Delwiche said in their study.

In a bid to quell rising public anger, a Fresno nonprofit that serves the disabled on Thursday told 350 employees to return $500,000 in taxpayer-funded bonuses.

Directors of the Central Valley Regional Center on June 20 decided to distribute a budget surplus to workers. The bonuses, based on salary and seniority, averaged $1,400.

The payouts were an effort to compensate for possible furloughs and layoffs, and for an anticipated increase in health-care premiums for employees in 2010, the directors said.

But the move drew criticism Tuesday from a top lawmaker and advocates for the disabled because they came as social service agencies face deep budget cuts. While the agency said services did not suffer because of bonuses, many critics said the money should have been spent on disabled people instead.

On Thursday, directors issued a statement announcing that the bonuses had been rescinded.

The agency receives funds from the state to provide services for children and adults with developmental disabilities. This year, it helped about 14,700 people.

Robert Riddick, the agency's executive director, said employees were told Thursday that they would have to return the bonuses, which he called "one-time salary adjustments." He said the workers took the news well.

"I think they recognize the difficulty of these economic times," Riddick said. "They've been willing to do their part in the past, when we had to leave positions unfilled and all do a little more work. They're willing to do their part again now and return the money."

Details of how employees will pay back the bonuses still had to be worked out, Riddick said.

"We will be working with our employees to repay," he said. He described Thursday's decision as a response to community concern.

Many employees already have spent the money, said Kerry Friedman, who identified himself as the domestic partner of a center employee who received a bonus. He declined to give the amount she received but said most of the bonuses were less than $1,000.

Friedman said his partner spent her bonus on "just bills -- your necessary bills."

Employees expect furloughs and layoffs in coming months, Friedman said. The bonuses "were a little glimmer of light for these hard-working people," he said.

Matthew Varpness, who identified himself as the husband of regional center case worker Rebecca Varpness, said the Visalia family had spent her bonus of about $1,000 to pay off debts.

"There's no way to get it back," he said.

One group that criticized the bonuses expressed support for the center's decision Thursday.

"We're very happy the board of directors for the regional center has changed their decision," said Ron Killingsworth, Central Valley spokesman for the California Disabilities Services Association, a group of organizations that provide services to the developmentally disabled.

Killingsworth said he felt badly for the employees who must pay back the money. The employees are "caught in the middle at this point," Killingsworth said. "I feel for them."

Lynne Arnold of Exeter said she likes the regional-center case worker who is assigned to her 11-year-old autistic son. "It's a really ugly situation."

But services are being cut for children, Arnold said. The center could not pay for her son to go to summer camp this year because of the state finances, she said.

Parents have been understanding about the state budget crisis, she said. But the employee bonuses were "like a slap in the face."

Senate Majority Leader Dean Florez, D-Shafter, had requested the agency explain its actions. Florez said the bonuses raised "a whole host of ethical and programmatic questions.

Riddick responded in a Thursday letter to Florez that he wanted to assure the senator that the "Board exercised due diligence before reaching their decision" to distribute the one-time salary adjustment to the staff.

The board would not have taken the action if there were not adequate funds through June 30 to meet the needs of the people the agency serves, he wrote.

Through salary savings, the center finished the year without a deficit in its operating budget, he said. The center has 17 vacant positions and has not hired to fill them since January 2008, except for four administrative support positions, he said.

The agency is one of 21 regional centers in the state that receive money from the state Department of Developmental Services. Central Valley Regional Center had a $177 million budget in the 2007-08 fiscal year. About $30 million paid for operations -- salaries, rent, supplies, Riddick has said.

With the state issuing IOUs until a state budget is approved for this year, regional centers are scrambling to line up loans from banks, said Nancy Lungren, a spokesman for the Department of Developmental Services.

Riddick said he is pursuing a bank loan of credit "in order to meet our obligations and pay for client services until the budget is signed.

In his letter to Florez, he said the money paid to the staff will go back into the agency's operations budget for the 2008-09 fiscal year and, if not spent, will be returned to the state. Riddick asked that any money refunded to the state be earmarked for programs and services in the Department of Developmental Services.

Florez said he's not sure that's possible any more. In a written statement, he said that he "has made inquiries to see if that is still possible, as it would have been if CVRC had returned the funds before the fiscal year ended."

July 2, 2009 (San Diego)--Local nonprofit organizations serving people with autism, cerebral palsy and other developmental disabilities will drastically cut back on services, or be forced to close their doors if the state follows through on plans to further cut funding, according to a new survey.

The survey of 300 San Diego County providers conducted by the Developmental Disabilities Provider Network, found that two thirds – 66 percent – said they would be forced to reduce services, fire staff and in some cases, entirely shut down operations, sending clients either to locked hospital wards, or in some cases, to the streets because other local providers will not have the capacity to accept new clients.

The survey was taken in the wake of news from the State Department of Developmental Services that an additional cut in funds of up to 7.1 percent may be passed down to organizations this September on top of the 3 percent cut instituted late last year as lawmakers attempted to pass a budget. Organizations have received cuts in other funding sources as well, and donations from foundation and private donors have forced some smaller organizations to consider changes in the way they have operated for decades in the community.

Elaine Lewis, executive director of Developmental Service Continuum, which operates 10 homes and provides support services for children and adults with developmental disabilities, says proposed cuts may mean making hard decisions about reducing services.

“An additional 7 percent reduction will have a significant impact on the level of services we now provide; our ability to endure and thrive is really going to be impacted. And keep in mind that we serve people in a home-based setting, state facilities can cost up to 17 times more.”

Other agency executives expressed similar concerns: Mark Berger of Partnerships With Industry, which helps individuals with developmental disabilities find employment, is afraid his clients won’t get jobs, and they’ll spend more and more time collecting social security instead of being taxpaying citizens.

Carol Fitzgibbons of Home of Guiding Hands, which has been providing housing and support for more than 40 years in East County, worries not only about the children and adults with developmental disabilities who receive services through her organization, but the more than 400 employees whose jobs are threatened. Tina Waters of the Community Coaching Center is concerned that further cuts will mean that parents trying to get their children with autism into her social skills program will face longer and longer waiting lists as her services are reduced even as the demand for them grows.

“If kids with autism lose their services, they tend to regress in their abilities,” explained Tracey Franks, whose 10-year-old son is a Community Coaching Center client. “I certainly don’t want my son to go back to negative patterns of behavior that we’ve worked so hard to extinguish. Because of this program, we can go to the store, to a restaurant, and that certainly wasn’t the case several years ago. This allows him to be a part of the community; we just can’t lose this.”
Other survey results show:

• 97% of those responding were negatively impacted by last year’s 3 % reduction in funding.

• 75% said they would continue to provide services for the next 12 months with a 3 % reduction in reimbursement rates.

• 66% said they could not continue to provide services with an additional 7% reduction in reimbursement rates. Some organizations stated they could survive just two-three months; others cited plans to reorganize and work to fund raise the shortfall.

• 73% of organizations providing day programs said their clients would have no other place to go to receive services if they close; 3% may be homeless as a result of the loss of the program.

• 41% of organizations providing supported living services so that clients are able to stay in their own homes said their clients would have no other place to go to receive services if they close; 12% may be homeless as a result of the loss of the program.

• Approximately 4,600 people with developmental disabilities will be impacted by cuts in services.

• 922 people will lose their jobs if organizations close or reduce services.

By Lisa Girion, LA Times
July 1, 2009

State regulators are violating mental health and other laws by allowing health insurers to deny effective treatment for children with autism, consumer advocates contend.

In a lawsuit, Consumer Watchdog, a Santa Monica group that monitors insurance practices, is asking a judge to order the Department of Managed Health Care to require insurers to provide autistic members with the services their physicians have ordered.

Without court action, the suit says, "California's thousands of autistic children and their families will continue to suffer."

The department said it was "holding health plans accountable to provide a range of healthcare services for those with autism" and was handling consumer complaints according to the law.

Insurers also insist that they are following the law and reimbursing policyholders for most autism care. The dispute centers on certain kinds of expensive therapy and whether a 1999 law requires insurers to pay for them.

Autism impairs communication and socialization and is often accompanied by repetitive, injurious behavior.

Insurers have long declined to pay for a variety of behavior-modification therapies, such as applied behavior analysis, because of the expense -- as much as $70,000 a year per child.

More than 37,000 children with the most severe cases receive services, such as applied behavior analysis, through the state. Because the state's limited budget for such children is rationed according to the neediest, thousands more suffer debilitating problems but are ineligible for state aid.

Applied behavior analysis involves a trained therapist working individually with a child for up to 40 hours a week. The therapist teaches skills, such as feeding oneself, by breaking them down into small steps and drilling them with positive reinforcement.

The battle over autism treatment is at least a decade old. In 1999, in response to widespread outrage over insurers' refusal to cover such needs, the state Legislature adopted the Mental Health Parity Act.

The law requires insurers to cover care for mental and behavioral problems at the same level as they do for physical illnesses.

Still, insurers continued to avoid paying for applied behavior analysis -- one of the most expensive autism therapies -- by denying requests on the grounds that it hadn't been proved effective.

Families complained to the Department of Managed Health Care, which submitted the disputes to independent medical review panels. These panels, composed of physicians working anonymously, review paperwork and issue individual, binding decisions.

Over the last two years, as the medical literature on the effectiveness of applied behavior analysis advanced, these independent review panels have decided every case in favor of the families seeking treatment. As a result, insurers, including Kaiser Permanente, were required to pay for the treatment.

Last year, however, Kaiser and other insurers, in letters and presentations to the department, urged it to change the way it handled such disputes and suggested that they no longer be sent first to the independent review panels.

The insurers began denying the treatment, saying it was educational -- not a covered medical service. And they suggested that the department, in deciding disputes, should first determine whether applied behavior analysis was a covered medical service. If not, then it should uphold the denials and stop sending the disputes to independent medical panels.

In March, the department issued a memo that adopted much of what the insurers had sought. The memo said the department would route autism treatment requests first to its coverage-dispute division.

In a statement, the department said it has told insurers they may not exclude any treatments "that have been determined to be healthcare services."

But the suit, filed Tuesday in Los Angeles County Superior Court, says the department's new policy has resulted in a reversal of outcomes. Insurers now are winning and families are losing. The decisions are binding and leave families to pay for the treatment themselves or have their children go without.

"Californians, including those stricken with autism and their parents and caregivers, expect regulators to enforce the law, not to side with insurance companies seeking to boost their profits by denying patients the care they need," said Harvey Rosenfield, founder of the nonprofit Consumer Watchdog and author of the landmark automobile insurance reform initiative Proposition 103.

lisa.girion@latimes.com

Powerful Democratic appropriators are opposing President Obama’s proposed funding boost for autism and cancer programs, claiming it would inject politics into scientific research.

House Appropriations Committee Chairman David Obey (D-Wis.), Rep. Rosa DeLauro (D-Conn.) and Sen. Tom Harkin (D-Iowa) are questioning Obama’s proposal to increase National Institutes of Health (NIH) funding for cancer by 5 percent and autism research by 16 percent, arguing that it goes against Congress’s traditional approach to science. Historically, lawmakers have avoided setting aside money to research cures for specific diseases in an attempt to leave those decisions to scientists.

The appropriators’ worry is that politicians will start picking what diseases to fund without regard to the evidence.

Obama’s budget calls for boosting total NIH funding by 1.5 percent — an increase of $443 million — to nearly $31 billion.

Obama has proposed increasing cancer research funding by $268 million, to approximately $6 billion. The president is seeking to boost funding for autism research by $19 million, to $141 million.

Harkin wondered whether so much money should go into two diseases alone.

“I’ve fought as hard as anyone for more money for cancer research, but there are other devastating diseases, too,” he said during a Senate Appropriations subcommittee hearing on NIH funding last month.

Obey said that the result of determining funding levels for research of one disease over another will lead to “political chaos in an area that ought to be determined by science.”

“I think virtually all of us are more comfortable with the final decisions being made on the basis of what peer-reviewed process leads us to the best scientific judgments, as opposed to doing a political balancing act,” Obey said during a hearing on Obama’s budget request Tuesday.

Health and Human Services Secretary Kathleen Sebelius said the administration is attempting a “balancing act” of respecting science while trying to find cures for autism and cancer. She said that Obama “fully supports letting science guide the research,” but she also noted that the president has a personal experience involving cancer: His mother died at the age of 52 after a bout with ovarian cancer.

“I do know that the president personally feels very strongly about the opportunity to cure cancer in his lifetime and has talked about that for years, based, I think in large part, on his personal experience,” Sebelius said.

DeLauro said Tuesday that lawmakers share Obama’s goal of eliminating cancer, noting that she too is a cancer survivor. But the lawmaker said she preferred to avoid the “earmarking of autism and cancer.”

Obey said that appropriators, regardless of party, have “steadfastly insisted that allocations to research on diseases be handled by scientists rather than politicians.”

“And so we have always resisted efforts to direct a specific amount of funding at a specific disease,” he added.

But advocates for cancer treatment said the administration has the right focus, even if it is bucking tradition.

The American Cancer Society (ACS) noted that cancer will kill more than 565,000 Americans and cost $200 billion this year.

“By investing in cancer research, Congress has the power to support promising scientific initiatives that can lead to breakthroughs in prevention, early detection and treatment that will save lives and reduce healthcare costs,” said David Pugach, associate director of federal relations for ACS’s Cancer Action Network, the group’s advocacy arm.

Political fights over scientific research spending are not new. In 2003, then-Rep. Pat Toomey (R-Pa.) sponsored an amendment seeking to cut money for studies on sexual behavior. Toomey’s amendment barely failed in the GOP-controlled House.

A spokesman for the Health and Human Services Department (HHS) noted that all diseases benefited earlier this year from the $10 billion investment in the NIH in the stimulus package. NIH research for diseases other than autism and cancer will also increase next year under the president’s proposal, by $154 million.

“We understand the committee’s interest in avoiding disease-specific funding requests,” said Bill Hall, the HHS spokesman. “By the same token, and consistent with his campaign promises, the president feels very strongly about the opportunity to combat cancer and to expand support for children, families and communities affected by autism spectrum disorders.”

By Katie Wright

Alex wanted to wear a tie for the first time in his life. He was also wearing special new slacks and a blazer. Alex is a handsome young man severely affected by autism. He and his mother Elizabeth, traveled all the way from CALIFORNIA to make their pre-approved comments at the public session of IACC.

Elizabeth and other Moms in attendance had to submit pre-approved questions to IACC in order to be allowed to make comments. OK, why the need to “pre-approve” comments? Are IACC meetings in danger of being crashed by strangers? Is this really such a hot ticket? Why can’t parents just sign up and be told what time to be there? Why is IACC censoring public comment? Who is IACC charged with serving? Uninformed bureaucrats who do not really care about our kids or is IACC there is serve the autism community?

Elizabeth had explained to Alex that they were going to talk at an important meeting and Alex even rehearsed speaking into a microphone. Because no seriously affected autistic person can sit in silence for the 6 hour duration of the meeting, Elizabeth and Alex had to take many walking breaks. They knew it would be their turn to speak at 3:30. 3:30 was also the published public comment time on the IACC agenda website.

As any Mom reading this knows, tremendous effort is required to time everything just right in a formal situation. Bathroom breaks, snacks, water and walking breaks were all carefully orchestrated in order to be at the IACC podium, ready to go at precisely 3:30. Elizabeth and Alex did their part.

Apparently, Tom and some others were in a rush to wrap it up. I suppose they had more important things to do. Rather than sticking to the schedule (a fairly important issue anyone who knows anything about autism should understand) Tom decided to announce time for public comment at 2. Of course all the Moms and their severely affected sons were not in the conference room then, so Tom and Della, IACC’s assistant, decided to end the meeting 2 hours early. Things are going so great with the autism- why continue the meeting? What could there possibly be to talk about? Shortly thereafter Elizabeth, Alex and other ASD family members walked into a nearly empty committee room.

Della was still there and informed the families that the meeting was over, public comment was announced early, they missed it, too bad. Della told the families that they should have been seated and ready to go anytime over the course of the 6 hour meeting! So, rather than apologizing for shafting autism families, this was really Elizabeth’s fault? Does Della even know anything at all about autism? Are she and Tom remotely aware of how utterly impossible it is to ask a severely affected ASD teen to sit silently for 6 hours? Do they care? What was the purpose of the published schedule if it was only going to be tossed aside when it suited Insel? The greatest irony is that these mothers brought their severely affected children so the committee, who are overwhelmingly bureaucrats, not parents, could see what a struggle it can be for these children to function.

Elizabeth did not want the day ruined for Alex. He had worked so hard to be ready. Elizabeth led Alex to the microphone so he finally make his comments- to an empty room. And then she clapped for her son.

Postscipt

To his credit Tom Insel did telephone Elizabeth and apologize.

Elizabeth graciously accepted his apology and spoke to Insel at length about the deficiencies within IACC. Insel listened as Elizabeth stated there is insufficient parent representation on the panel and most committee members appear wholly unfamiliar with issues affecting kids on the severe end of the spectrum. The committee operates with no sense of urgency and seems, at best, indifferent to public input. Insel promised to remedy these issues, specifically by placing this issue on the agenda of the next meeting and never again canceling the public comment segment. Insel is also seeking to have Katherine Sebelius attend the next IACC, so she too may recognize the urgency of the situation. It is in everyone’s interests for Insel to follow through with these promises. Let’s hope that is what happens.

Katie Wright is Contributing Editor for Age of Autism.

Click HERE for the podcast on Autism One Radio.

By Dan Olmsted

A full house of about 80 people heard Mark Blaxill and David Kirby address the autism epidemic and its environmental roots Friday -- and one of the attendees was a member of the House who suggested their remarks may soon get even more attention.

"The Energy and Commerce Committee should have both as witnesses," said Rep. Chris Smith, Republican of New Jersey, praising them for the quality of their presentations and citing the urgent health crisis created by the rising numbers of autistic children. He said he would speak with Rep. Carolyn Maloney D-NY, about setting up a hearing. Maloney sponsored the briefing but was unable to attend due to a committee hearing, but her chief of staff, Ben Chevat, introduced Blaxill, Kirby and Smith. (That's Rep. Smith on the right, speaking. David Kirby is in the background.)

Smith spoke eloquently at both the start and the end of the hour-plus briefing; more than anything he said, it was his attendance that gave a boost to autism advocates present. The community lost a strong advocate this year when Rep. Dave Weldon, R-Fla., retired from the House, but Smith seemed more than ready to step up as a thoughtful, fair-minded advocate for parents' concerns. Blaxill reached Smith where he lived, literally -- Blaxill grew up in New Jersey, and noted the autism rate is now 1 in 99. Smith recounted his involvement with parents in Brick Township, N.J., where the autism rate of 1 in 150 in the 1990s first sounded the alarm of rising prevalence. (That's Mark Blaxill speaking.)

Smith, a member of the House since 1980, said he was not anti-vaccine but said the program should not go unexamined if the price is an autism epidemic, and specifically mentioned concern about mercury as a trigger. He said that as part of his work on human trafficking, he traveled internationally extensivlely, and was recently told by parents of a number of children in Lagos, Nigeria, that they believe mercury in vaccines was causing a surge in the condition there.

This was the second year Blaxill and Kirby spoke to Congressional staffers in the Cannon House Office Building. The Hannah Poling and Bailey Banks cases, along with new studies of environmental links -- including vaccines -- gave the proceedings a "mainstream" feeling despite efforts by public health officials and some pediatricians to assert that they question has been "asked and answered." (Below, David Kirby speaks.)

Judging by Smith's comments, the respectful questions, the audience size and the concerns raised by Blaxill and Kirby's presentations, those questions are still being asked in the halls of Congress -- and the next stop may be a Congressional Committee where Blaxill and Kirby will have the attention of a roomful of Congress members.
--
Dan Olmsted is Editor of Age of Autism

By Ginger Taylor

On Friday, the National Biodefense Science Board met in emergency session to work on issues surrounding the H1N1 flu pandemic. They reviewed the report of their working group, "H1N1 COUNTERMEASURES STRATEGY AND DECISION-MAKING: A REPORT" [HERE], in order to provide input on it before it is sent to the Advisory Committee on Immunization Practices who makes final recommendations to Kathleen Sebelius on what the response to the outbreak should be.

They are working off of several key assumptions:

• Novel H1N1 viruses will continue to circulate.
• A second wave is likely to occur, as soon as fall 2009.
• Best estimates suggest that infection rates will be 2-3 times higher than expected with seasonal influenza.
• The second wave could peak in October, but we must anticipate onset as early as September.
• Attack rates will continue to be highest in children and young adults.
• Hospitalizations and deaths will continue to be concentrated among children and younger adults with underlying medical conditions.
• Children will continue to act as an amplifier to community spread of the virus.
• Severity will continue to be similar to or somewhat greater than the current wave but the number of cases will be substantially larger.
• Catastrophic disruption of societal function, as anticipated in some planning scenarios for a severe pandemic, is unlikely.
• Waiting for a full characterization of the immunologic properties of candidate vaccines with extensive studies, and doing studies in series would result in the H1N1 vaccine not being available until late fall.
• Having vaccine only after the peak may be worse than having no vaccine at all: it incurs all of the risk and cost with no potential benefit. Licensed vaccines, or vaccines similar to licensed products, will be most acceptable at the beginning of the next epidemic wave.
• Safety of the vaccines, both real and perceived, will shape risk-benefit calculations and acceptance. This will be true for both public health officials applying a collective perspective, and for individuals deciding whether to be vaccinated.
• Decisions about vaccine formulation must be made rapidly on the basis of available data. Strategies can and should be changed as more data become available, but we cannot wait beyond mid‐August if vaccine is to be in supply by mid-September.
• The Biomedical Advanced Research & Development Authority (BARDA) strategic goal of being able to produce vaccine for all 300 million Americans within 6 months of declaration of a pandemic is an appropriate goal for capacity. However, it is not the same as the strategic goal for dealing with a specific pandemic.

Much of their probable agenda has already been publicly discussed, but here are a list of the board's current stance on vaccine issues. from page 5 of the report:

Goals and Principles:

• A critical goal is to have some monovalent novel H1N1 vaccine available by mid-September 2009, should it be needed. This goal can take advantage of the decades of experience with other H1N1 subunit vaccines, typically at a 15mcg dose.
• Begin with the goal of targeting a small amount of the vaccine to a small group where it will do the most good. To the extent possible, this should be driven by sound epidemiologic data.
• This likely means focusing on infants, toddlers, school-age children, pregnant women, and adults with risk factors applicable to novel H1N1 virus. Manufacturing of vaccine for additional cohorts of the US population and the world should proceed, but without interfering with the goals listed above.
• Safety monitoring must be in place before novel H1N1 vaccination begins, and have the sensitivity, power, and speed to detect signals and determine causal relations in a timely manner to aid policy and communication.
• HHS should remind States and local health departments that durable record-keeping of who receives the vaccine (preferably in electronic format) is an essential component of local implementation plans.
• HHS should consider recommending school-based immunization delivery for children for logistical simplicity.
• Decision-making should remain flexible, based on clearly articulated principles and scientific evidence, and should be transparent.

Of the greatest concern to me was this portion of the paper:

• If the United States Government (USG) wants to have novel H1N1 vaccine available in September 2009, it should pursue a simplified testing program to achieve that goal. Additional studies may be appropriate for additional supplies in subsequent months, but time of availability seems to be the dominant criterion for vaccine decision making.
• Decades of experience with A/H1N1 influenza viruses provide a basis for selecting initial antigen quantities and dosing. If the US goal is vaccine availability on the shelf in September 2009, 15mcg unadjuvanted subunit vaccine and live attenuated intranasal vaccine for children may be a rational approach.
• If the second wave is delayed or production is slower than expected, mix-and-match studies of vaccine plus separate adjuvant may yield information that may stretch the available vaccine supply.

During the discussion, it was decided that the board would not only recommend having the first doses of the vaccine ready by September 15th, that they would shoot for September 1. However since the clinical trials of the vaccines will begin just this week, the studies will not be completed by the time manufacturing decisions must be made in order to meet the September deadline.

So it was decided to recommend that the first few tens of millions of doses be formulated and produced BEFORE the results of the clinical trials are in. After the trials are completed, they will then have the option to go back and make changes to the vaccine. It sounded like the second round of vaccine would be expected at the end of October, but they were not completely clear on that.

This means that members of the public who are vaccinated with the H1N1 flu shot in September and likely October will be receiving an untested vaccine. (Note that these will most likely be children, infants and pregnant women).

This seems contrary to the statement that Kathleen Sebelius made on the "Meet The Press" this week when she said:

"We're on track to have a vaccine ready by mid-October. We need to make sure it's safe, and so clinical trials will begin. And we need to make sure it's, it's effective against this new novel strain. So that's what's happening in the meantime. And if the scientists say it's a go, by mid-October we will have a vaccine available and start with the priority communities."

Scientists are already saying "go" and the people will have no such assurances that it will work, or be safe, when it is first administered.

The National Biodefense Science Board [HERE] will be meeting at least once a month for the next six months as this plan evolves. By law all meetings must be open to the public, and they are being teleconferenced. I encourage our community to be listening in and providing public comment and questions.

Ginger Taylor, M.S. is a former marriage and family therapist raising her seven year old son Chandler, who lapsed into autism following his 18 month vaccinations. She blogs at AdventuresInAutism.com

WASHINGTON--(BUSINESS WIRE)--The National Vaccine Information Center (NVIC) is calling on the Obama Administration and state Governors to provide evidence that it is necessary to give experimental swine flu vaccines to children in schools and that strong mechanisms for vaccine safety screening, recording, monitoring, reporting and vaccine injury compensation are in place. NVIC announced that parental concerns about vaccine safety and vaccine mandates will be addressed Oct. 2-4, 2009 in Washington, D.C. at the Fourth International Public Conference on Vaccination.

“Parents and legislators should be asking themselves right now: Why are children the first to get experimental swine flu vaccines? Are schools equipped to get signed informed consent from parents before vaccination, keep accurate vaccination records and screen out children biologically at high risk for suffering vaccine reactions? Will people giving these vaccines know how to monitor children afterwards and immediately record, report and treat serious health problems that develop? And will states have the financial resources to compensate children who are injured?” said NVIC co-founder and president, Barbara Loe Fisher.

According to the FDA, swine flu vaccines will be tested for only a few weeks on a few hundred children and adults. NVIC is questioning whether people giving vaccines to children in schools will obey safety provisions in the federal National Childhood Vaccine Injury Act of 1986 that include:

Giving written vaccine benefit and risk information to parents before vaccination;
Keeping accurate vaccine records including the manufacturer’s name and lot number;
Recording and reporting serious health problems, hospitalizations, injuries and deaths that occur following vaccination to the federal Vaccine Adverse Events Reporting System (VAERS) http://www.medalerts.org/
Federal Bioshield and pandemic legislation shields vaccine manufacturers and providers from all liability for injuries and deaths that occur when vaccines and drugs are administered under an Emergency Use Authorization during public health emergencies declared by government officials.

NVIC’s October 2-4, 2009 Conference will feature more than 35 scientists, doctors, bioethicists and legal experts discussing the science, policy, law and ethics of vaccination.

For more information, go to www.NVIC.org

Nothing could have prepared Nicole Kalkowski for the agony of seeing her once-bubbly and affectionate son, Ryan, slowly slip away from her into the grip of autism -- a complicated and hotly debated condition that takes a heavy toll on every family it touches. Meet Nicole, her husband, and their children as they struggle to cope with one of the nation's fastest-growing developmental disorders.

The statistics are shocking. One in 150 children living in the United States has an autism spectrum disorder (ASD). And each year, the numbers tick upward by 10 percent to 17 percent. Although the causes of autism are under debate, the families affected by this perplexing disorder agree that it's a singularly terrifying diagnosis. Major signs include problems with communication and social interaction, from the child who doesn't smile at his mom to one who stops speaking. Unusual and often repetitive behaviors, such as rocking back and forth, are also strong indicators -- and agonizing for a parent to witness. And once an ASD is suspected, there's no time to lose: Children with autism can make the most progress before they turn 3, in what's commonly called the "crucial window" of brain development. When autism invades a home, life gets flipped on its head. This is a reality that Nicole Kalkowski faces every day. After her toddler, Ryan, showed red flags for autism, she struggled to get answers. In this multipart series, REDBOOK follows Nicole and her husband as they race against time to help their son.

Sitting in the family room of her Las Vegas home, Nicole Kalkowski lights up when she sees her 2-year-old, Ryan, come bopping down the stairs. Entering the room, he begins walking in circles and gazing at his fingers, which he's fluttering close to his face. As if on cue, Nicole leaps up, playfully tosses Ryan onto the couch, and stretches and massages his legs while singing a made-up song. For a moment, he looks up at her. Nicole is elated, showering him with praise: "Good eye contact, Ryan!"

Ever since Ryan's development began to backslide in November 2006 -- when he stopped saying the words he'd learned -- these seemingly small accomplishments, or "mommy moments" as Nicole calls them, carry this 35-year-old stay-at-home mom through the tough days, of which she's seen many in the past year. For Nicole and her family, including her husband, Tim, 37, and daughters, Ciera, 8, and Ella, 6, the long journey leading to Ryan's shocking diagnosis of autism has been an emotional tug-of-war.

A Sweet, Bubbly Boy

From the time he was born, Ryan was the most social of the Kalkowskis' three children. "He was full of big smiles and would let anyone hold him," recalls Nicole. "As a toddler, when he heard a group of adults laughing about something, he'd let out a big chuckle the second everyone was quiet. He pretended to understand what we were talking about so he could be part of the group."

Beyond being "a ham," as Nicole affectionately puts it, Ryan was on track developmentally. He waved, blew kisses, and by 14 months, he was putting two words together, such as hold you." Leading the typical toddler life, Ryan had weekly playdates and was toted around to the mall, to his sisters' activities, and to their school. "The school was also our church, so we were there a lot and Ryan was well-known," she says. "Everyone was excited to see him."

His biggest admirers, however, were at home. His sisters adored their bedtime routine with Ryan, who would grab his blankie and head to each of the girls' rooms to say goodnight. "He gave them a big hug and blew kisses," says Tim, who owns a contracting business. "Sometimes he crawled into their beds to cuddle. The girls couldn't get enough."

Suspicious Behavior

When Ryan was 17 months old, Nicole took her outgoing toddler for a routine checkup and immunizations. "He's doing well," the pediatrician said. But over the next week, Ryan became lethargic and pale. He had chronic diarrhea. And he lost his appetite. Nicole was out of her mind with worry. The doctor ran tests, assuming a virus was to blame. Two months later, when Nicole saw Ryan munching on a granola bar, "I felt like I'd hit the lottery," she says.

Her elation was short-lived. Within two weeks, Ryan had a string of ear infections and stopped saying some of his usual phrases, like "bye-bye" or "night-night." Days later, he no longer responded to his name or brought her toys. Wondering if he was speech-delayed, Nicole took her concerns to friends; they assured her that "boys are slower with language." Their comments seemed to make sense. "Eight years ago, I was a special-education teacher, so I questioned whether I was overly tuned into the situation," says Nicole. "So we told ourselves, 'Ryan is busy learning other skills, and the ear infections slowed his language.'"

Just before Ryan's second birthday, Nicole's anxiety returned. Her little boy still hadn't recovered his lost words and wasn't making much eye contact. His sweet bedtime routine ended too. "I'd lead him into his sisters' rooms, but he refused their hugs," Tim recalls. Eight-year-old Ciera cried, "Why doesn't Ryan love me anymore?"

Nicole's concerns continued to swell when she saw an episode of Oprah on identifying autism. "It described a type known as 'regressive,'" says Nicole. One of the early signs: loss of language. Nicole's heart sank, and she insisted to Tim that they take Ryan to the pediatrician.

The doctor asked, "Does Ryan get excited when he hears the garage door open when Daddy gets home?" The couple nodded yes.

"Does he have receptive language?" -- meaning, if you say it's time to go bye-bye, he gets his shoes. The couple again nodded yes.

"Does he put two words together?" Nicole explained that she hadn't heard some of his old two-word phrases like "bye-bye," but he did have some new words.

"Just work with him on two-word phrases," the doctor said. "Ryan's fine."

The Search for Help

But Nicole still feared that Ryan was not fine at all. And one morning in late July, four months after seeing the pediatrician, her fears were confirmed. She went into Ryan's room to get him from his crib, and he wasn't saying "Mama" as usual. When she lifted him up, he tried to push her away. Distracted by her daughters, Nicole left Ryan for a minute. When she returned, he was on the floor with his back to the door, rocking slightly, and painstakingly lining up toy cars in a straight row. "At that moment, time stood still," says Nicole. "I desperately called his name, but he wouldn't turn around. I wasn't asking one more person if something was wrong; I knew there was."

Distraught, Nicole contacted Nevada's Bureau of Early Intervention Services (NEIS), the state agency that provides services to kids under 3 with developmental delays. The first available appointment was a month away.

During that wait, Ryan's symptoms snowballed. He fixated on objects, such as the spinning wheels on his cars, and he held his fingers near his face, repeatedly flicking them. Noisy places triggered wild tantrums. "At my daughters' school, he screamed and kicked people," says Nicole. "Wearing a smile for my daughters was difficult. Most of the day, I cried, trying to get Ryan to look at me. The feeling of losing him was killing me."

Finally, at the end of August, the Kalkowskis had their evaluation with an NEIS developmental specialist and a speech pathologist. During the three-hour meeting, Tim choked up as he described Ryan's behavior: "It all hit me," says Tim. "Talking about the negatives -- what he wasn't doing well -- was painful. And hearing that our 2-year-old was performing at a 1-year-old level was the worst."

Toward the end of the meeting, the NEIS specialists told Nicole and Tim that although their agency wouldn't provide a diagnosis, Ryan did qualify for some services. The couple was upset -- they knew Ryan had to receive a diagnosis in order to get the full range of therapies he needed. The Kalkowskis also felt let down by the meager amount of therapy the state would offer. Instead of seeing both occupational and speech therapists, Ryan would be assigned a "coach" who would tackle both areas of treatment. For only two hours a week, the coach would work with Ryan and teach Nicole and Tim the therapies, so they could perform them the rest of the time. "I kept reading that 40 hours of behavioral therapy is what you need for the most improvement," says Nicole. "We weren't even close. And hearing that Tim and I would be responsible for so much of the speech and OT [occupational therapy] scared us." Nicole was terrified that her son would lose his best chances for any kind of recovery.

Worried and confused, Nicole immediately sank into a depression. "I didn't sleep and became obsessed with autism," says Nicole. "I read every Website and book. When love and anger ball up in you like that, you can read faster than ever." Meanwhile, Ryan's condition worsened: His hands were often curled into fists and he stopped eating with his fingers; instead, he used Nicole's hand to pick up food and put it into his mouth. Nicole was afraid that he faced severe autism. "I had no hope and felt like my heart was being torn out," she says. "I worried that he'd never have friends and would never tell me, 'I love you.' I worried about his sisters and how it would be growing up with a brother with a horrible disorder. I feared for my marriage because I knew the statistics about couples who have children with autism aren't good. I feared for everything in his future and the future of our family."

For two long weeks, Tim watched his wife of 13 years become withdrawn and desperate; finally, he decided that they had to talk. A teary-eyed Nicole recalls that night: "He said: 'What are you doing? You can't keep this up. Ryan will be fine, and don't think you know his whole future because he has autism.' Then, in a caring way, he added, 'You helped so many other kids when you were a special-ed teacher, and you can't give up hope when it's your own child.' After, we prayed together. That night, I felt deeply connected to Tim, and realized Ryan would be fine."

A Fierce Determination

With that adjusted perspective, Nicole began her search for information anew, seeking out Websites that used words like hope and recovery. Choosing not to be limited by Nevada's offerings, the couple hired private speech and occupational therapists. "Two months before Ryan started losing words, we moved into our 'dream house' and cut down on spending," says Nicole. "We had no budget for two therapists to come once a week at $135 each, but there was no time to spare."

Nicole was also determined to get a diagnosis and more state-funded therapies for Ryan. She contacted autism-advocacy groups and learned that having Ryan evaluated and diagnosed by a doctor who specializes in detecting and treating developmental and behavioral difficulties (what's known as a developmental pediatrician) would officially qualify him for state-funded services. During a planning meeting she had with her team of NEIS specialists, she insisted on getting an appointment with the organization's developmental pediatrician. Her demand was met, and she had an appointment scheduled for two weeks later. Still, she was afraid of getting the runaround and once again walking out the door without a diagnosis.

Nicole felt her next move would make all the difference: She took Ryan back to their family pediatrician for a diagnosis. The doctor was shocked to see the once-vivacious boy she'd known sitting in the corner, staring at his fingers. She listened as a shaken Nicole rehashed all that had happened with Ryan. The doctor hugged Nicole, and handed her a diagnosis of autism.

That gave Nicole more confidence when meeting with the developmental pediatrician about a week after, in late September. The doctor agreed that Ryan had autism, and in addition to the therapies they were learning from the NEIS coach, the doctor approved a larger range of services, including a speech therapist, occupational therapist, and nutritionist.

Since that diagnosis, the scope of Nicole's daily to-do's has become mind-boggling. The biggest nonnegotiables on her schedule board -- which is prominently posted over her desk -- are practicing the therapies she's learned. About five times a day, Nicole "brushes" Ryan: She strokes his back, hands, arms, legs, and feet with a plastic-bristled brush to help him adjust to sensations, including touch, which can overwhelm him (sensory issues are common among children with autism). For the same reason, she does "heavy work" with Ryan three times a day; she might, for instance, have him pick up a weighted ball. And she gives him deep-pressure joint compression massages (she presses on combinations of joints, such as ankle and knee, to release the calming brain chemical serotonin). Nicole wishes she had more time to explore treatment options. No matter how much she does, Nicole is certain she's not doing enough.

"With everything that's going on with Ryan, I have trouble balancing attention between my kids," says Nicole. "For example, I may walk away from doing homework with my daughters when Ryan needs something. Then I hear, 'Why are you always going to Ryan?' It makes me wonder what else I'm messing up."

Looking at her schedule board, she does point out bright spots: Sunday evenings, after the kids are asleep, she enjoys quiet time with Tim. There's also an upcoming lunch with her girlfriends. And then there are the Monday-morning playdates with a friend from church and her son. "It's been healing when people like Sue show up at my door to offer support," she says. "She and I walk and take the boys to the park. It's the one day I feel like a normal mother again."

Look for the next installment of Living With Autism in the May issue of REDBOOK.

The path of a popular medicine from the laboratory to the chemist or doctor’s surgery can involve years of clinical trials on a select group of patients.

When the new vaccine for swine flu arrives in Britain, regulators said this weekend, it could be approved for use in just five days.

Regulators at the European Medicines Agency (EMEA) said the fast-tracked procedure has involved clinical trials of a “mock-up” vaccine similar to the one that will be used for the biggest mass vaccination programme in generations. It will be introduced into the general population while regulators continue to carry out simultaneous clinical trials.

The first patients in the queue for the jab - being supplied to the UK by GSK and Baxter Healthcare - may understandably be a little nervous at any possible side effects. A mass vaccination campaign against swine flu in America was halted in the 1970s after some people suffered Guillain-Barré syndrome, a disorder of the nervous system.

However, regulators said fast-tracking would not be at the expense of patient safety. “The vaccines are authorised with a detailed risk management plan,” the EMEA said. “There is quite a body of evidence regarding safety on the trials of the mock-up, and the actual vaccine could be assessed in five days.”

The UK government has ordered enough vaccine to cover the entire population. GPs are being told to prepare for a nationwide vaccination campaign.

Dr Peter Holden, the British Medical Association’s lead negotiator on swine flu, who has been attending Department of Health meetings on the outbreak, said GPs’ surgeries were prepared for one of the biggest vaccination campaigns in almost 50 years.

He said although swine flu was not causing serious illness in patients, health officials were eager to start a mass vaccination campaign, starting first on priority groups. First, the jabs would reduce the chances of a shortage of hospital beds because of people suffering from swine flu. Second, it would reduce the effect on the economy by ensuring workers were protected from the virus.

“The high-risk groups will be done at GPs’ surgeries. People are still making decisions over this, but we want to get cracking before we get a second wave, which is traditionally far more virulent.”

Holden said it was likely the elderly would be given their seasonal flu jab as well as the swine flu vaccination. The new vaccine is likely to require two doses.

Details of the inoculation plans emerged after the death of a patient, reportedly a middle-aged man, at a hospital in the Basildon area of Essex. The victim had no underlying health problems, but officials say there is no evidence the swine flu virus had mutated into a more dangerous strain.

Holden said it would be the biggest campaign in response to an outbreak since mass vaccination against smallpox in 1962. He said surgeries would be aiming to inoculate about 30 people an hour in a “military-style operation”.

The Department of Health said it had still not finalised which groups would be vaccinated first, but children, frontline health workers, people with underlying illnesses and the elderly are likely to take priority.

The European Commission is also identifying population groups which it believes should get priority. It is keen to ensure that countries such as the UK, which had ordered supplies of the vaccine in advance, do not cause inequities in treatment elsewhere in Europe.

It warned health ministers in a note circulated last month that if the vaccines were more readily available in some countries it could cause “vaccine tourism/shopping in other member states”.

About 15 people have died of swine flu in Britain, but most of those infected get only mild symptoms. According to the latest figures from the Health Protection Agency, the UK has had 9,718 confirmed cases of the disease.

(Austin, Texas) – The Press Complaints Commission (PCC) of London, an independent body that oversees journalism fairness in the UK, has issued an interim order calling for the Sunday Times to remove stories written by Brian Deer about Dr. Andrew Wakefield from its web site.  Dr. Wakefield had filed an extensive complaint with the PCC regarding errors of fact in Deer’s reportage on the MMR vaccine and its possible relationship to autism.  The General Medical Council (GMC) in the UK is presently hearing evidence involving Dr. Wakefield and two of his colleagues following a complaint to the GMC by Deer himself. The PCC decision today appears to indicate there are questions about the accuracy of the Deer stories.
 
The PCC complaint by Dr. Wakefield provides clear evidence that Deer’s allegations of “data fixing” by him are false. The complaint also accused Deer of an undisclosed conflict of interest since Deer also failed to reveal in his articles that he was the person who made the original complaint to the GMC, misleading the newspaper’s readers over the accuracy of his reporting.
 
“Given the ongoing nature of the dispute,” Stephen Abell of the PCC wrote, “the articles should be removed from the newspaper’s website until this matter has been concluded.  This would not be an admission of any liability on the part of the newspaper.”
 
Although media are expected to respond promptly to complaints through an informal process, the Sunday Times took more than three months to answer detailed issues raised by Dr. Wakefield, and called upon legal representation to write the paper’s response. Despite this the paper’s management have failed to produce any evidence of “data fixing” by Dr. Wakefield. In its letter to Dr. Wakefield regarding his complaint against Deer, the PCC “expressed concern at the initial slowness of the newspaper’s response.”  The PCC said it delayed a complete ruling until it has a fuller accounting of all information submitted to the GMC, but that the outcome of the GMC hearing is not relevant to a final decision by the PCC.   
 
“My contention has always been,” Dr. Wakefield explained, “And it always will be that journalism, before it is published, must stand on its merits with good documentation, sources, and corroboration. Deer’s stories fail on every count.  I see no connection between the GMC’s hearing and a decision by the PCC.  If the Sunday Times cannot defend the information today, which it can’t, then it was unable to do so at the time of publication.”
 
Wakefield has been one of the subjects of the longest GMC hearing in history.  Although the hearing was expected to be concluded in August 2009, information from attorneys involved in presenting evidence indicate the case is not likely to be decided upon by the panel until December and may not conclude until early 2010.  
 
About Thoughtful House: Thoughtful House advocates a multi-disciplinary treatment approach to treating autism and supports a 'safety-first' vaccination policy. The research program at Thoughtful House is dedicated to understanding the biological origins of childhood developmental disorders and establishing best practices in treating children affected by these disorders. www.thoughtfulhouse.org

In light of the PCC ordering the Times Newspaper to remove Brian Deer's latest material from its website (HERE), I thought it would be a good time to write about the film “Selective Hearing, Brian Deer and the GMC” and my involvement in its making.... The video is below, if it doesn't download, you can click HERE.

The film has been igored by the UK press despite a copy being sent to every major news editor.

To set the scene we need to go back two years to the opening day of the GMC. I was there with my wife Lara and members of the UK Treating Autism Charity, supporting the doctors and also (in my mind at the time the more important task) talking to the press about how recovery is possible.

We had our first encounter with Brain on his return from lunch with the MP Dr Evan Harris. Brian had trouble with the front door at the GMC, he pushed the wrong door and rather comically bumped his whole body into it. There was a large cheer from the crowd as Brian skulked inside a bit red faced.

My mother had a saying, when as a naughty child I would trip or fall whilst up to no good "THE DEVIL DID THAT" she would say. This lit up in my head like a neon sign.

A year passed, and the time came for Andy to answer the prosecution. I had been busy on eBay buying a second hand camcorder (a model with 3CCDs and an external mike input and a Rode mike.) This was the best I could afford that looked amateurish but gave broadcast quality pictures.

The night before Lara and I set about making some placards starting with "1 in 100: Why?" and "HONK" (to be held up to passing traffic.)

As it got late and the red wine started to "inspire" the more cerebral offering of "Carrey funnier that Baron Cohen. FACT!" And a rather fetching marionette with a Brian head pasted on, captioned with "who's pullin your strings, Brian ?"

On the day there were several hundred of us outside speaking to the press and protesting cheerfully. Brian took lunch but on his return we were waiting !!!

The resulting footage was donated to Cryshame. The independent film maker Alan Golding has used it along with interviews with Carmel Wakefield and parents of the lancet children to make a superb film which exposes Brain Deer and the bogus case against the three doctors.

Please set aside an hour to watch it and encourage others to watch it too. If you are a TV channel and would like to broadcast it please contact us through the editors of Age of Autism at olmsted.dan@gmail.com.

Please visit www.cryshame.com to see the full uncut "Deercam" footage.

Mark Hawkings lives in Kent in the UK, is Edwards dad and is married to the warrior mom Lara. He amuses himself by saying “I wonder if Jim Carrey has seen my film?”

msnbc.com

WASHINGTON - Schoolchildren may be first in line for swine flu vaccine this fall — and might even be able to get the shot right at school.

Health and Human Services Secretary Kathleen Sebelius is taking that possible scenario to school superintendents around the country, urging them to spend the summer planning what to do if the government decides it needs their buildings for mass vaccinations.

"If you think about vaccinating kids, schools are the logical place," Sebelius told The Associated Press Tuesday.

No decision has been made yet on whether and how to vaccinate millions of Americans against the new flu strain that the World Health Organization last week formally dubbed a pandemic, meaning it now is circulating the globe unchecked. But the U.S. is pouring money into development of a vaccine in anticipation of giving at least some people the shots.

While swine flu doesn't yet seem any more lethal than the regular flu that each winter kills 36,000 people in the U.S. alone, scientists fear it may morph into a more dangerous type. Even in its current form, the WHO says about half of the more than 160 people worldwide killed by swine flu so far were previously young and healthy.

If that trend continues, "the target may be school-age children as a first priority" for vaccination, Sebelius said Tuesday. "That's being watched carefully."

School-based flu clinics not common
Schools do occasionally team up with local health officials for special flu vaccination clinics but it's not common. More than 140 schools around the country scheduled flu vaccination days last fall, some providing free vaccine. Some vaccinated only students bearing parent consent forms; others opened their doors to entire families.

In a wide-ranging interview, Sebelius said it could take several years to meet President Barack Obama's top healthcare priority — covering the uninsured — even if Congress manages to pass legislation this fall.

"Will something probably be phased in? You bet," Sebelius told The AP. It could take until 2011 or 2012 to set up new programs, time that would help spread out a cost that by some estimates would be $1 trillion over 10 years.

Among the aims of the administration's planned overhaul is to help eliminate health disparities between minority groups and whites, "which frankly is unconscionable," Sebelius said.

Hispanics and blacks are more likely to lack health insurance, and also have higher rates of a host of illnesses. But Sebelius said some of the most severe disparities are found with American Indians, and pledged a multiyear effort to reverse "a historic failure of the government." The U.S. is obligated to provide free health care on reservations, but the troubled Indian Health Service has only about half the money it needs.

More immediately, Sebelius faces the looming question of whether to push forward with swine flu vaccinations this fall, on top of the regular winter flu vaccine that will be distributed as usual. A key challenge would be making people understand who needs which, or both, vaccines, decisions that will be made in part based on how swine flu behaves in the Southern Hemisphere this summer, where flu season is just beginning.

Sebelius soon will call together the nation's governors to be sure "these months between now and the fall aren't used as vacation months" but in getting ready.

"We can always sort of back off" if the new flu fades away, she said, "but we can't wait til October hits and say, 'Oh my heavens, what are we going to do?'"

Pilot doses set for this summer
Companies are on track to provide pilot doses for testing later this summer, Sebelius said. Those government-led studies will check if the vaccine seems to work, if one dose or two will be needed, and most important if it's safe. The last mass vaccination against a different swine flu, in the U.S. in 1976, was marred by reports of a paralyzing side effect — for a feared outbreak that never happened.

So the Food and Drug Administration will closely track vaccine safety, Sebelius said.

The secretary said: "The worst of all worlds is to have the vaccine cause more damage than the flu potential."

A recent U.S. Court of Appeals for the Federal Circuit decision reversing the U.S. Court of Federal Claims' denial of a vaccine injury claim highlights the widening gulf between the Federal Circuit and Federal Claims court on vaccine cases.

On June 18, the Federal Circuit reversed the Federal Claims court's decision to deny the petitioner compensation under the National Vaccine Injury Compensation Program. The Federal Circuit case, brought on behalf of Enrique Andreu, alleged that he began having seizures the day after receiving a diphtheria, whole-cell pertussis and tetanus (DPT) vaccine at the age of eight weeks. According to the case, the seizure disorder ultimately led to a low IQ and language and developmental delays. Andreu v. Secretary of Health and Human Services, No. 2008-5184 (Fed. Cir.).

The vaccine compensation program is a no-fault system for injury claims from a variety of vaccines. The U.S. Department of Health and Human Services administers the program with the U.S. Department of Justice and the U.S. Court of Federal Claims in Washington. Special masters hear cases filed at the Federal Claims Court, but either side can appeal rulings to the court and ultimately to the Federal Circuit.

The Federal Circuit ruling in the Andreu case comes in the wake of the special masters' initial rejection of claims in three test cases, in an omnibus proceeding of more than 5,000 cases. The cases claim that the measles, mumps, rubella (MMR) vaccine and a vaccine containing mercury in the preservative thimerosal caused autism, whether administered separately or simultaneously.

Oral arguments for two of those appeals are slated for July, and one wrapped up earlier this month.

The Federal Claims court has yet to rule on three other test cases involving autism injury claims.

The Andreu case, authored by Circuit Judge Haldane Robert Mayer, said that the special master's decision is inconsistent with two previous Federal Circuit rulings: Althen v. Secretary of Health and Human Services, 418 F.3d 1274 (Fed. Cir. 2005); and Capizzano v. Secretary of Health and Human Services, 440 F. 3d 1317 (Fed. Cir. 2006).

Mayer wrote that "three fundamental errors infected the special master's decision" to deny compensation. Mayer cited the special master's ruling that the doctor's testimony was insufficient to establish a causal link between the vaccine and seizures, her requirement that the claimant's injury find proof in medical literature and her conclusion that the claimant's "clinical picture" didn't show a link between the seizures and vaccine.

The decision affirms that the special master can't require too high of a burden of proof from plaintiffs because it's a remedial compensation program, said Cliff Shoemaker of Vienna, Va.-based Shoemaker & Associates, who represented the injured party who appealed to the Federal Circuit.

"It's a no-fault compensation program designed to compensate people injured by vaccines," he said. "But it's a very adversarial and litigious [process involving] complex litigation. It's not what Congress intended."

The Justice Department represented the Health and Human Services secretary in the case, and spokesman Charles Miller said the agency declined to comment.

The special masters are very protective of vaccines and "require too much science to prove a case," said vaccine lawyer Kevin Conway of Boston-based Conway, Homer & Chin-Caplan.

"It's seems that petitioners have to go all the way to the Federal Circuit to get relief," Conway said. "[The ruling is] again saying you don't need scientific certainty to prove the case. You need legal evidence."

Conway's firm is handling two out of three autism test cases.

The Andreu case "does give us hope" that the special masters will be more receptive to claims in the future, Conway said.

The standards laid out in prior cases are particularly important in DPT cases because residual seizure disorder is no longer on the Vaccine Injury Table, but claimants can make causation in fact claims, said Robert J. Krakow, a Garden City, N.Y., lawyer, who has a vaccine injury specialty. The Vaccine Injury Table lists medical conditions and injuries that the compensation program assumes are caused by vaccines, and a time period after the vaccine when the condition must appear in order for the claimant to collect compensation.

"You have to prove a medical theory causally connected to the vaccine and the injury, but it doesn't have to be accepted as proven, and you don't have to reach scientific causality," Krakow said. "It's a legal definition of causation. You have to prove that the medical theory is plausible."

Unprecedented amount is six times more than annual seasonal flu shots

ATLANTA - A potential fall swine flu immunization campaign may involve an unprecedented 600 million doses of vaccine, though officials said Friday they haven’t figured out how to administer so many doses or accurately track side effects if a seasonal vaccine is given simultaneously.

The swine flu campaign could far eclipse the roughly 115 million doses of seasonal flu vaccine distributed each year, officials said at a national vaccine advisory committee meeting.

No final decision has been made about whether a swine flu vaccination campaign will take place or whether all Americans would get immunizations. Health officials said that a swine flu vaccination campaign could be only a few months away, and that as many as 60 million doses could be ready by September. The timing depends on how fast a vaccine can be produced and tested, however.

However, health officials are clearly getting ready for a massive vaccination effort, and worry that illnesses could continue or even accelerate in the fall or winter. Preparation discussions dominated a three-day meeting in Atlanta of the Advisory Committee on Immunization Practices, a panel that guides U.S. vaccination policy.

The virus already has caused at least 27,000 illnesses and 127 deaths in this country. Twelve states are seeing widespread cases, and about 6,000 cases were reported in the past week — more than in any other week since swine flu first appeared in late April.

Those are just reported cases. More than a million U.S. infections probably have occurred, said Dr. Anne Schuchat of the U.S. Centers for Disease Control and Prevention.

“This new infectious disease is not going away,” said Schuchat, director of the CDC’s National Center for Immunization and Respiratory Diseases.

A new, small CDC study found the virus can cause more serious disease than seasonal flu in ferrets, which have a similar respiratory system to humans. But it does not seem to spread as easily, at least through the droplets that infected ferrets sneeze or cough into the air, said Dr. Nancy Cox, a CDC flu scientist.

However, officials are still worried about the seasonal flu, which causes an estimated 200,000 hospitalizations and 36,000 deaths each year.

Five flu vaccine manufacturers are producing 120 million doses for the 2009-2010 flu season, with a third of that available by Sept. 1 and most of the rest shipped by Nov. 1, CDC officials said. Federal officials are working to ensure a swine flu campaign doesn’t force the manufacturers to scale back production of the seasonal vaccine.

The swine flu campaign could be a huge undertaking, involving as many as 600 million doses. Although about 300 million people live in the U.S., health officials anticipate children and perhaps adults under age 50 may need two doses each.

However, the logistics of such a campaign are still being worked out. The CDC relies on one company to distribute 80 million publicly financed vaccine doses for children. That company, McKesson Specialty, still has not said whether it could handle distributing as many as 600 million doses of swine flu vaccines to clinics and doctors around the country, said Dr. Jeanne Santoli, who oversees vaccine purchase and distribution for the CDC.

Officials said they’ll probably need to recruit physicians who don’t usually give flu shots because local health departments have cut more than 10,000 jobs. Tracking side effects could also be tricky.

Problems don’t always show up in early studies. And if the vaccine is given at the same time as the seasonal flu shots, it could be difficult to figure out which vaccine is causing problems.

That happened in 1976, when officials vaccinated 40 million Americans in anticipation of a new strain of swine flu. But the pandemic never materialized, and at least 500 people who got the shots came down with a paralyzing condition called Guillain-Barre Syndrome. It’s still unknown what caused the condition.

Some health officials said they’d rather start a swine flu vaccine campaign a few months after the seasonal shots to simplify side-effect monitoring. But they may not have a choice, said Cox, the CDC flu scientist.

Swine flu and seasonal flu have been circulating together, with new data from Australia — which is experiencing its annual flu season — indicating that flu cases there are 60 percent swine and 40 percent seasonal.

“There are too many complexities” to say what will be done in the fall, Cox said. “We’ll have to wait and see.”

On Wednesday, Rep. Carolyn Maloney (D-NY) and Rep. Christopher Smith (R-NJ) called on HHS Secretary Kathleen Sibelius to dedicate between 1.6% and 6.6% of the $300 million in federal stimulus funds earmarked for the purchase and distribution of vaccines to fund a major study of health outcomes – including autism -- among vaccinated and unvaccinated people.
 
The move comes just one week after the federal government’s National Vaccine Advisory Committee also unanimously voted to recommend a feasibility study on conducting the controversial investigation.
 
Some federal officials have balked at doing a vaccinated-unvaccinated study, citing its high cost – which Maloney and Smith said would fall in the $5-$20 million range.
 
“Indeed, this was part of the rationale provided by Dr. Thomas Insel, Director of the National Institute of Mental Health, when he obtained a reversal of a previous vote,” backing the study at the Federal Interagency Autism Coordinating Committee, which Dr. Insel chairs, the lawmakers wrote.
 
But, they noted, “The American Recovery and Reinvestment Act has authorized $300 million in new funding to promote the purchasing and distribution of vaccines. Surely, dedicating resources to fundamental safety research should command as high a priority as increasing our already generous purchasing practices for childhood vaccines.”
 
Another obstacle often cited by opponents, Maloney and Smith said, is that the number of unvaccinated children in the United States is “too small or too different to permit a valid study.”
 
But as they noted, Duane Alexander, Director of the National Institute of Child Health and Human Development, has said that the National Children's Study – with its 100,000 children in the sample – “may itself contain several thousand unvaccinated children.” And, they added, children such as the home schooled and the Amish, “with known reduced vaccination rates” could be recruited to gain higher numbers.

As for “differences” among the unvaccinated, Maloney and Smith wrote that, “refusals are rising among the most affluent, educated and professional parents,” many of whom, Maloney noted, live in her Manhattan district. “Indeed, it is the rise of such refusals that lends urgency to the need to investigate the safety of our current childhood vaccine program,” the lawmakers said.
 
Maloney and Smith are cosponsors of the House "Comprehensive Comparative Study of Vaccinated and Unvaccinated Populations Act," which they will reintroduce in the coming weeks. They wrote to Secretary Sibelius seeking her “support in furthering the goals” of the bill.

Just last week, the National Vaccine Advisory Committee recommended asking an expert panel, such at the Institute of Medicine, to weigh in on the strengths, weaknesses, ethical issues and costs of studying and comparing vaccinated, unvaccinated, and “alternatively vaccinated” groups of children for a number of disorders - including autism.

Prospective clinical trials, where children would be randomized into vaccinated and placebo groups, would be unethical. But NVAC suggested one publicly submitted idea to conduct an “observational study” looking at, “natural variation in vaccination schedules, including some children where vaccination is declined through parental intent.”

The recommendation was made to Sibelius’s DHHS.

The Obama Administration has now been asked – on the record – to weigh in on two key controversies in the ongoing vaccine-autism debate. Also this week, the US Supreme Court asked the Administration for its opinion on whether autism families should be able to file thimerosal lawsuits against drug companies in civil court or not.

These are two big, looming decisions, and the autism world will be watching very intently.

Will the Obama people come down in favor of federal preemption for pharmaceutical products over the legal rights of families? And will they ignore the advice of their own National Vaccine Advisory Committee and try to shut down research to close a wide gap in our knowledge of immunization safety?

We will find out soon enough.

In addition, the CDC is advising a seasonal flu vaccine for anyone who feels they need one.

"While we are focusing a lot of attention on the 2009 H1N1 influenza virus, we do expect seasonal strains to emerge, and we are issuing updates of which strains to expect," Dr. Schuchat said. These include the A-H1N1, A-H3N2, and B strains, "which are available in this year's vaccine," she noted. "This past year's recommendations encouraged annual vaccination [of children].... This year, [the CDC] is no longer just advising vaccination whenever feasible but is [issuing] a full-out recommendation" of the seasonal flu vaccine.

Only about 40% of the US population received a flu vaccine last year. The CDC is recommending and emphasizing "an intensification of use" of the vaccine.

The CDC has specifically recommended that healthcare workers be immunized, as well as that campers at sleepover summer camps and attendees of military academies where there have been notable outbreaks of influenza receive the flu vaccine and antiviral agents, but only if appropriate.

"I don't think antiviral prophylaxis is a good idea," Dr. Schuchat said, noting that oseltamivir-resistant influenza strains have been reported.

Dr. Schuchat said that the latest laboratory-confirmed case count for the H1N1 influenza virus is 43,771 cases and 302 deaths, "but this is the last time we will be reporting cases in this way." Instead, the CDC will have a FluView Weekly Surveillance Report, updated every Friday, on its Web site.

The National Institutes of Health announced yesterday that clinical trials will begin as early as next week of 2 H1N1 influenza vaccine candidates in adults, either alone or in conjunction with the seasonal flu vaccine and, if safe, in children.

Sanofi Aventis and CSL Biotherapies, manufacturers of the 2 candidate vaccines, told a US Food and Drug Administration (FDA) advisory committee yesterday that they expect to have a vaccine available by October. Dr. Schuchat said that she is concerned that the flu season could be well underway by that time, because the school year begins within weeks in many areas.

The virus is unpredictable, she said, "skipping entire communities, while hitting others really hard." In addition, the virus can cause a wide spectrum of illness, from mild symptoms to respiratory arrest and neurological problems, including seizures. "That is why we are taking the virus so seriously." H1N1 often affects young, apparently healthy individuals, as well as those at high risk, and it could affect more than 40% of the population.

"We are preparing for the worst-case scenario of 60% of the population being affected," Dr. Schuchat said. "The value of worst-case scenario planning is that it allows for continuity planning."

The FDA's Advisory Committee on Immunization Practices is set to meet July 29 to propose H1N1 vaccine recommendations. Children aged 0 to 4 years will likely be the top priority, followed by school-age children, healthcare workers, pregnant women, and adults with chronic diseases.

Today, the FDA announced it had issued an emergency use authorization for a third diagnostic test for the 2009 H1N1 influenza virus because a public health emergency involving H1N1 was declared on April 26, 2009. It is the Focus Diagnostics Influenza H1N1 (2009) Real-Time Reverse Transcription Polymerase Chain Reaction diagnostic test.

The emergency use authorization allows Focus Diagnostics to distribute the test to laboratories certified under the Clinical Laboratory Improvement Amendments to perform high-complexity tests. This test is intended for use in the detection of the 2009 H1N1 influenza virus in patients with symptoms of respiratory infection.

The test does not indicate the stage of infection, nor does a negative result preclude influenza virus infection, FDA officials emphasize.

1 in 150?

According to the Centers for Disease Control (CDC) who track the prevalence of diseases for the United States – autism affects 1 in every 150 children.   At TACA, we are often asked about this number and where it comes from. 

WHAT’S IN A NUMBER?

In short, the CDC is guessing at the number of cases of autism – and guessing based on information from more than 7 years ago! As of July 2009, the CDC has yet to complete a census or full count of the number of individuals affected by autism.  The current statistics are based on information (surveys and sample data) from 2002.  (1)

CALIFORNIA & AUTISM:

California Is one of the only states to collect a formal, in-depth census of those affected with autism (2).  Since 1987, California officials count cases with “full blown” autism, not including those individuals diagnosed with PDD (Pervasive Developmental Delay) or Asperger Syndrome. Unfortunately these statistics have not been updated since 2007. With several years of a state budget crisis we are not sure if these data collection reports will continue.  Now in 2009, we don’t know if the numbers are continuing to rise at the same pace.  Since, 1987 California has experienced over a 6,000% increase in autism.

WHY IS THE NUMBER SO IMPORTANT?

In my opinion, this number is the basis for everything. The statistics can describe the size of the issue we are dealing with, calculate the burden on school districts & health insurance but more importantly on the family.   Not too long ago TACA surveyed families and asked the question “how much do you spend out of your family income to help your child affected by autism?” The answer was startling with the average hovering between $25,000 - $55,000 a year. Some families spend a lot more and some families spend less.   We also asked TACA families “do both parents work now that you have a child diagnosed with autism?”  Many families indicated that one parent had to stay home to care for the child with autism which leads to the question, “what is the loss of income a typical family with a child on the spectrum experiences?”

TACA MEMBERSHIP GROWTH:

TACA is not a university setting submitting a formal study or surveys. We are trying to stay abreast of the issues our members experience so we can fundraise and create programs to better serve them.  What we do know for sure: our membership is growing every year.

*TACA membership as of June 30, 2009

Each year, TACA needs to raise more money to serve the families we serve – for free.  We do not receive federal funding to provide the programs and services we offer. We help all the families who come to TACA.

IN THE ARMED FORCES THE AUTISM “NUMBER” IS HIGHER:

Recently, the Armed Forces have counted the number of cases of autism affecting those families serving our country.  The number is 1 in 88 (3).  It makes you wonder if the numbers across the United States – if updated – would be the same? Or is it just unlucky that the folks in the military have a higher prevalence?

What the CDC states as fact:

• A new case of autism is diagnosed every 20 minutes
• There are 24,000 new cases of autism in the U.S. every year
• The estimated economic impact is $90 Billion per year
• Autism receive 5% of the research funding of many less prevalent childhood diseases
• There is not medical detection or cure for autism
• Compared to other disabilities, autism is the fastest growing developmental disability in the U.S. today.

WHY NUMBERS COUNT:
The definition “X” (the number affected by autism) will dictate if we have an epidemic, how much the government will spend on research and helping school districts & families.  Without knowing “x” we cannot understand the scope of the issue completely and apply funds to help.

What I hope our government does is care enough to count. We need a complete census of all U.S. citizens every ten years, why not do that for autism?  We are well beyond a decade of an autism epidemic and need to answer this important question. Let’s ask how many are affected and see how many adults and children are affected with this sometimes very debilitation condition. Once we count, we know the scale of the issue and then can address everything from there. Our kids deserve this important first step.

Thanks for reading & caring about TACA Families,

Lisa Ackerman
TACA Executive Director
Mom to Jeff & Lauren, wife to Glen

References:

1) www.cdc.gov/ncbddd/autism

2) www.dds.ca.gov/Autism

3) www.theautismnews.com/2009/07/10/some-families-deal-with-war-autism