February 14, 2006

The Age of Autism: Snoozeweeklies

The Age of Autism: Snoozeweeklies
By Dan Olmsted
Feb 14, 2006, 19:25 GMT

WASHINGTON, DC, United States (UPI) -- The nation`s top two newsweeklies have just weighed in on the problems of boys and the decline in science literacy. Both abjectly failed to address a crucial part of the picture: the impact of environmental toxicity on children`s development -- and America`s future.

Newsweek devoted its cover story to 'The Boy Crisis' and reported some alarming figures: 'By almost every benchmark, boys across the nation and in every demographic group are falling behind. In elementary school, boys are two times more likely than girls to be diagnosed with learning disabilities and twice as likely to be placed in special-education classes.'

And over the past 30 years men have slipped from 58 percent of college undergrads to 44 percent, Newsweek noted.

The suspects in Newsweek`s sights: the way boys` brains work, the failure of schools to teach and test in a way that reflects that difference, the absence of adult men in their lives ...

Everything, in fact, but the notion that something environmental could be holding boys back. Is there an existing model for such an idea? Why yes, there is. It`s called autism, and it affects boys at several times the rate of girls -- 1 in 80 boys are somewhere on the 'autism spectrum,' astonishingly. A growing number of experts believe an interaction of genetic susceptibility and toxic triggers is involved in the soaring rate of diagnoses over, oddly enough, the past 30 years.

'I think there`s a real concern that there`s been a change in our environment,' Dr. Carol Berkowitz, president of the American Academy of Pediatrics, told NBC News last year. Ironically, the network did its autism series in conjunction with Newsweek.

'An exposure to some toxins, chemicals, environmental factors -- either when a mother is pregnant or after the delivery of the child -- that has led to autism,' she summarized the concerns.

Time`s cover was a painting of a boy whose chemistry experiment had blown up in his face. ('Is America Flunking Science?') Again, here`s a boy who can`t learn, with consequences not just for him but for our country`s future.

But why?

Time`s explanation for this shortfall: the government cutting back on basic research; corporations, their eye on short-term profits, doing the same; ' ... the quality of education in math and science in elementary and high schools has plummeted.'

'The years from `Baby Einstein` to AP physics are an increasing source of worry for ... colleges and universities, which see a shrinking pipeline of talented U.S. students pursuing the sciences,' Time said.

Well, if they can`t pay attention, they probably can`t do Advanced Placement physics, either. And why can`t they pay attention?

An environmental watchdog outfit claims that one in six infants is born with a blood mercury level above that considered safe by the Environmental Protection Agency. They go so far as to assert today`s kids have been exposed to enough mercury to potentially cause learning disabilities.

This 'outfit' is the EPA itself.

There`s really nothing controversial about the idea that toxic exposures can affect developing brains, whether in utero or in infancy, whether we`re talking about autism or ADD. That`s why last year the pediatricians joined other public health groups to challenge the EPA`s own power plant mercury rule.

'Many young children exposed to mercury before birth will suffer subtle but irreversible brain damage. Preventing this tragedy, which affects not only families but entire communities, should be a national priority,' said Barbara A. Blakeney, president of the American Nurses Association.

What am I not getting here? Autism is increasing; it mostly affects boys; the nation`s top pediatrician expresses concern about brain damage from a toxic trigger. Learning disabilities are increasing; they mostly affect boys; the EPA expresses concern about brain damage from a toxic trigger. Shouldn`t that loom large in any examination of why Johnny can`t learn and we`re in danger of losing our supremacy in the sciences?

Actually, five years ago U.S. News & World Report -- the third newsweekly and, in this case, the most acute -- did make this point. The cover story was headlined: 'Kids at Risk: Chemicals in the environment come under scrutiny as the number of childhood learning problems soars.'

'Experts have advanced a variety of theories for the increase in disorders, including better diagnostic methods,' the magazine reported. 'But a growing body of evidence suggests that compounds called neurotoxicants may be contributing significantly to the problem.'

So for Time and Newsweek to highlight the problems of today`s kids, yet ignore any link to toxic exposures, shows how far we are from solving the problem.

What problem?

E-mail: dolmsted@upi.com

February 13, 2006

Secret report reveals 18 child deaths following vaccinations

Secret report reveals 18 child deaths following vaccinations
Telegraph
13/02/2006

Eighteen babies and toddlers have died following childhood vaccinations in just four years, a secret Government report reveals.

Four deaths have been linked to suspected adverse reactions to the measles, mumps and rubella (MMR) triple jab, according to documents prepared for the Government's expert advisers on immunisation.

The controversial jab has been beset by fears of a link to autism and bowel disease, although since its introduction in 1998, yearly deaths from measles have fallen from 16 to zero, while the jab against meningitis C is thought to save 50 lives a year.

The report, covering the period between 2001 and 2004, details how one baby suffered a cot death following MMR vaccination in 2003. Two more infants were reported to have died after having the MMR jab in 2001, but the cause of death in both cases was unknown.

After the death of a child who developed meningitis and swelling of the brain three weeks after an MMR jab in 2004, a claim for compensation was made by the child's parents. It is not known if this was successful.

Six fatalities followed meningitis C vaccinations between 2001 and 2003. The deaths of seven other babies were linked to combined vaccines against diphtheria, tetanus and whooping cough and reported to the Medicines and Healthcare products Regulatory Agency (MHRA). They include a baby who died from a heart attack. Another died after a polio jab.

Almost 800 other reports of suspected complications of childhood vaccination - including convulsions and hyptonia, in which the baby becomes floppy like a "rag doll" - were also made, including 160 for MMR.

Medics raised the alarm under the MHRA "yellow card" warning system, set up to monitor suspected adverse drug reactions. Although making such a report does not prove that vaccination caused death or injury, it means that doctors fear it may have played a part.

Their reports were considered by the Joint Committee on Vaccination and Immunisation, which concluded that no significant safety issues were identified.

Details of the document, which emerged after a request under the Freedom of Information Act, come amid fears of "vaccine overload" due to a rise in the number of jabs given to infants.

The Department of Health last week announced the introduction of a new jab against the pneumococcal bug, which causes a deadly strain of meningitis, in addition to a booster for Hib disease, which can cause meningitis. This means that by the time a child is two he will have had 25 vaccinations, although some will be given in five-in-one or three-in-one combinations.

Dr Richard Halvorsen, a general practitioner who runs a private single jabs clinic at Holborn Medical Centre in London, said: "We know vaccines have potential side effects, but this does not mean that children died as a result of MMR or other jabs. However, it is not insignificant because these are reports from health professionals who suspect an adverse vaccination reaction."

Experts last night said that the true figures for suspected fatalities and serious side effects could be much greater. Dr John Griffin, the former editor of the medical journal Adverse Drug Reactions, said: "For fatalities, it is probably only one in two which gets reported and for other side effects one in 10."

This means that almost 40 baby deaths could have occurred following jabs between 2001 and 2004, and 8,000 serious adverse reactions.

Prof Peter Openshaw, a leading immunologist from Imperial College London, said parents should not be alarmed by the report's findings.

"A lot of vaccine reactions are just inexplicable," he said. "It may be that someone had an infection before they got a jab, it may be something in their genetic make-up or sometimes there are allergic reactions. But vaccines are extraordinarily safe compared to the diseases they prevent."

Overall, thousands of lives have been saved by childhood immunisation. Smallpox and polio have been eradicated.

A spokesman from the Department of Health said: "Immunisation programmes are regularly reviewed to ensure that all children have the best possible protection."

How to Track Medical Bills Efficiently

Click. Hey, a Billing Error!
By KAJA WHITEHOUSE
February 12, 2006
Wall Street Journal

Tracking medical bills and payments is a complicated task that even the most organized people can find daunting. But new software tools can help.

Rick and Barrie Rappaport of Chicago struggled for years to gain control of the rush of medical bills associated with their daughter's rare genetic disorder. At one point, they tried logging all their information on an Excel spreadsheet. When that proved cumbersome, they organized file folders for each member of the family and the corresponding doctors.

No matter what they tried, "it was never easy," says Barrie Rappaport, a book-publishing analyst. "I always found it overwhelming."

To resolve this problem, people like the Rappaports are turning to software programs that allow them to easily view their medical bills in relation to their insurance coverage and the payments they have made. These tools can help people identify billing errors. They can also do much more, including flagging appointments and helping people determine whether they are eligible to deduct medical expenses on their tax returns.

A Growing Responsibility

Gaining control of medical spending is an increasingly important part of managing household finances. As medical costs rise, consumers are taking on a greater share of the expenses, with higher deductibles and co-pays. Meanwhile, missed payments can have a deleterious effect on consumers' credit ratings.

There are at least three software products that can help: Medical Expense Wizard ($59.95) was introduced in 2003 by medical administrator Pamela Selby-Moore, who is also a cancer survivor. Software giant Intuit launched Quicken Medical Expense Manager ($49.99) last winter, followed by SimoHealth, which launched a free product last summer.

When you receive a medical service, you typically receive a bill -- and may be asked to pay immediately. You also receive a corresponding "explanation of benefits," or EOB, from the insurance company. The EOB is not a bill. It simply tells you what insurance will cover.

Ideally, you shouldn't pay your medical bills until you have compared them with the corresponding EOBs to make sure everything lines up. Some people don't check their bills against the EOBs. Even worse, some patients mistakenly pay the EOB amount in addition to the amount billed.

Multiple Bills

Another complication: It can take months for all the related bills to arrive. A routine doctor's visit or minor medical procedure can result in a slew of bills from a multitude of service providers, including the doctor and laboratories.

The software programs allow people to enter the information from their EOBs and their medical bills in the same place. This way, people can keep track of the bills and EOBs that have yet to arrive. Once they have everything, consumers can more easily spot billing errors.

These programs also can help at tax time. Taxpayers can take a deduction when their total medical spending for the year exceeds 7.5% of their adjusted gross income. The programs tally up your spending and can identify which medical expenses qualify.

Medical Expense Wizard and Quicken Medical Expense Manager offer more bells and whistles than the free SimoHealth product. Both Quicken and Medical Expense Wizard provide pre-formatted dispute letters that allow people who spot billing errors to easily address the problem. People using those two programs can also set reminders when phone calls need to be made or bills need to be paid.

Meanwhile, the Quicken and SimoHealth programs have features to help people manage their flexible spending accounts.

For more information and to order or download the software, see www.medicalexpensewizard.com, www.quickenmedical.com and www.simohealth.com.

WSJ: McDonald's French Fries Contain Possible Allergens Wheat, Milk

McDonald's French Fries Contain Possible Allergens Wheat, Milk
By DAVID P. HAMILTON
February 13, 2006; Page B4

McDonald's Corp. said its french fries contain "wheat and milk ingredients" that might cause problems for diners sensitive to these substances.

McDonald's previously had described its fries as free of substances that can cause allergic or other medical reactions in sensitive people. The Oak Brook, Ill., fast-food giant said the change in its ingredient disclosures followed its decision to conform to new federal food-labeling rules, and doesn't reflect any change in the ingredients of its fries or the way they are prepared.

Some people with food-sensitivity conditions previously considered McDonald's fries safe based on information supplied by the company. For instance, some individuals with celiac disease -- an autoimmune condition triggered by gluten, a protein found in wheat, rye and barley -- worried in an online forum that perhaps McDonald's fries have always contained gluten, despite the company's assertions to the contrary.

Cathy Kapica, McDonald's director of global nutrition, said the company's fries include a "natural flavoring" made, in part, from extracts of wheat and dairy products. Dr. Kapica said those extracts are processed in ways designed to remove wheat and dairy proteins, which are the substances generally responsible for triggering allergies or food-sensitivity problems.

Until last week, McDonald's described the flavoring as safe for people with food allergies and other dietary sensitivities. On its Web site, McDonald's listed the fries on a page of menu items "for people with gluten sensitivity." On an "allergies and sensitivities" page, the fries were described as free of gluten and milk or wheat "allergens."

More recently, however, McDonald's decided to bring its nutritional information into voluntary compliance with new Food and Drug Administration food-labeling rules that took effect Jan. 1. Those regulations, which apply to packaged foods but not to restaurant meals, require labels to note the presence of common allergens such as milk, eggs, wheat, fish or peanuts.

Under McDonald's interpretation of the FDA rules, Dr. Kapica said, the company decided to note the presence of the wheat and dairy ingredients used to flavor its fries. "If someone is really sensitive, they need to be aware that this product was at one point derived from wheat and dairy," Dr. Kapica said.

On the other hand, anyone who has eaten the fries without incident "can continue to do so," Dr. Kapica said.

Write to David P. Hamilton at david.hamilton@wsj.com

Autism Projects in Memory of Liz Birt

From NAA:

Autism Projects in Memory of Liz Birt

Liz dedicated a large part of her life to expanding services, treatments, and research for people with autism. The list below is comprised of projects in which Liz had a special interest and which reflect her priorities in the field of autism. All donations are being made to 501 c 3 non-profit organizations and are fully tax deductible. 100% of all donations will be applied to the described programs.

1. Truth & Love Fund, Thoughtful House
Liz was an advisor to Thoughtful House and helped establish their non-profit status. Her son Matthew was treated by several of the doctors there. Thoughtful House provides clinical care for people with autism and conducts research on the causes and treatments of autism, in order to facilitate recovery. More information about this unique center is available at www.thoughtfulhouse.org.

The Truth & Love Fund was established by Thoughtful House to provide free or low cost clinical services to families with financial need. This concept had been discussed by Liz with Thoughtful House directors, and now Thoughtful House would like to put Liz's wish into practice.

Donations should be designated for the "Truth & Love Fund" and can be sent to:

Thoughtful House Center for Children
Attention: Anissa Ryland, Director of Operations
3001 Bee Caves Road
Austin, TX 78746
Telephone : 512-732-8400x 222
Fax: 512-732-8353
Email: anissa.r@thoughtfulhouse.org


2. Camp Scholarships, Extreme Sports Camp Liz was a co-founder and board member of Extreme Sports Camp, and she volunteered as a counselor. Based in Aspen, Colorado, the camp offers sports and recreation in the summer for older children and teenagers with autism. The camp program consists of hiking, water skiing, swimming, rock climbing, rafting, and other sports with one-on-one support. More information about the camp is available at www.extremesportscamp.org or by calling 970 920-3695.

Donations would support the camp's scholarship program, which ensures that
any child can attend camp regardless of need. Donations can be sent to:

Extreme Sports Camp, Inc.
P. O. Box 10729
Aspen, CO 81612

3. Helping Hand Program, National Autism Association
Liz was a board member of the National Autism Association. NAA provides advocacy and education for families with autism and supports biomedical research on autism. NAA has an emergency fund for families in dire financial crisis called the Helping Hand Program. Priority is given to single parents.

The fund provides grants of up to $1,500 per family for critical needs such as biomedical treatments, supplements, and therapy services for their autistic child, as well as basic living expenses. Liz was instrumental in establishing this fund as part of her work on the NAA board. More information about NAA is available at www.nationalautismassociation.org.

More information about the Helping Hand Program is available at www.nationalautismassociation.org/helpinghand.php.

Donations for this effort should be designated for the "Helping Hand Program" and can be sent to:

National Autism Association
1330 W. Schatz Lane
Nixa, MO 65714

4. Liz Birt "Go for the Gold" Mouse Model, SafeMinds
Liz was a co-founder and board member of SafeMinds, a parent advocacy organization dedicated to expanding research on the role of mercury from vaccines and other sources as a cause of autism. One of the researchers which SafeMinds is funding is Dr. Mady Hornig of Columbia University's Mailman School of Public Health. Dr. Hornig has created a mouse model for autism using exposure to the mercury preservative thimerosal found in infant vaccines. Expanding this research, she is developing a treatment protocol using gold salts which she will administer to these genetically susceptible mice to determine if the treatment might improve their behavior and brain function and if there are side effects. Gold tightly binds mercury and there are anecdotal reports of gold salts being effective in improving autism outcomes. Gold salts (chrysotherapy) were also used for many years for the treatment of autoimmune diseases such as rheumatoid arthritis. This project has been aptly named "Go for the Gold." Dr. Hornig was inspired to undertake this research when she learned of Liz's death. More information about SafeMinds and the research it funds is available at www.safeminds.org or by calling 404 932-1786.

Donations should be designated for the "Go for the Gold Project" and can be sent to -

SafeMinds
254 Trickum Creek Road
Tyrone, GA 30290

5. Investigation of GI Disorder in Autism, Steve Walker, PhD
Liz strongly believed that there was a link between onset of gastrointestinal problems and her son Matthew's regression into autism. Liz actively raised funds for research on this issue, and the involvement of GI disorder in autism is now acknowledged among clinicians. An important study on GI disorder and autism which Liz supported is being conducted by Steve Walker of the Wake Forest University School of Medicine in Winston-Salem. Dr. Walker is examining intestinal tissue samples of 300 children who presented with regressive autism and chronic GI symptoms, to correlate viral gene expression with clinical outcomes. This research has implications for medical treatment as well as identifying factors contributing to autism.

Donations for this research would allow Dr. Walker to complete his analysis of all 300 children for which he has medical histories and biopsies. Questions about this research can be directed to Laura Bono of the National Autism Association, which is collecting funds for this effort. The phone number is 877-622-2884.

Donations should be designated for "Steve Walker GI-Autism Research" and should be sent to -

National Autism Association
1330 W. Schatz Lane
Nixa, MO 65714

6. Pro-Bono Legal Services
Liz was an attorney and a strong believer in volunteerism. She was involved in a number of pro-bono legal activities that advanced the cause of autism. Among these were efforts to increase transparency and accountability at key federal agencies around vaccine safety. Her legal activities were most recently centered on A-CHAMP, a non-partisan organization formed by parents to advance public policy issues affecting children with neurodevelopmental and communication disorders. Liz was a co-founder and board member.

Information on A-CHAMP is available at www.a-champ.org.

A-CHAMP needs volunteers to help them with their efforts around political advocacy. Especially needed are those with a legal background, although dedicated people with any skill are welcome.
Those interested in helping protect the rights of individuals with autism can call Bobbie Manning, Director, A-CHAMP, at 716 713-6625 or by emailing her at bmanning83@adelphia.net.


Think Autism. Think Cure.

UK Doctors Angry at Vaccine Backlash

The gist of this article is that people who are wary of vaccines "overwhelming" the immune system are irresponsible in voicing their concerns because the immune system is not overwhelmed by diseases introduced by the triple and quardruple jabs.

This idea is both wrong, and a red herring. People who do not have normally function immune systems can be overwhelmed by multiple antigens. They can also have their immune systems over react to the antigens and develop autoimmune disorders like Gulliam-Barre and Autism.

There is no debate to the idea that vaccines can trigger autoimmune disorders. The safety sheets that comes in the box will list the autoimmune disorders that can be triggered by the vaccine. There is no debate as to whether or not autism is an autoimmune disorder. The only debate is whether or not autism is one of the autoimmune disorders that is triggered by vaccines.

Doctors angry at vaccine backlash
The campaign against a new jab is exposing children to killer illnesses, fear medical experts

Robin McKie and Jo Revill
Sunday February 12, 2006
The Observer

Britain's leading child health experts united this weekend to reassure parents that the use of multiple vaccines for children was safe, calling claims to the contrary 'irresponsible'.

Anti-immunisation campaigners say too many jabs can overload a child's immune system and lead to illness. But experts say the idea endangers children's lives. 'The idea of vaccine overload damaging our immune defences is rubbish,' said Professor David Goldblatt, director of clinical research and development at Great Ormond Street Children's Hospital, London. 'It is a myth, and those who spread it are doing immense harm. The public is beginning to doubt the worth of vaccines and that has deeply worrying implications for their health.'

Last week the government announced it would add a new vaccine against the pneumococcus bacterium - a cause of ear infections, pneumonia and meningitis - to its immunisation programme for children, raising the number of jabs given to under-twos from seven to 10.

Groups like the anti-vaccine campaign Jabs, backed by several tabloid newspapers, argued that would put too much strain on children's immune systems. They said previous combinations of vaccines had triggered serious side-effects in children.

The claim was flatly rejected by scientists. The only previous connection drawn between multiple vaccines and illness was in 1996 when autism was blamed on immunisation for mumps, measles and rubella (MMR). The link was refuted by all subsequent studies.

'Twenty years ago, news of a new vaccine that could save children from dying from meningitis would have been hailed as a medical breakthrough,' said paediatrician Adam Finn, of Bristol Children's Hospital. 'Now it is howled down as a threat to their well-being. It is very depressing.'

People underestimated the complexity and power of the human immune system, the scientists said. Far from being overwhelmed by a handful of new substances in the bloodstream, the body was capable of coping with an estimated 10 billion chemical invaders, known as antigens.

'Even if the concept of immune overload was true, campaigners would still not have a leg to stand on,' said Dr David Elliman, of Great Ormond Street. 'Far from increasing numbers of antigens to stimulate immune defences, we have reduced them a hundredfold.'

Until a few years ago the whooping cough vaccine given as part of the 5-in-1 jab (see box) used whole bacteria. These contained about 3,000 antigens, each raising an immune response. Today the vaccine uses a fragment of the bacterium containing only five antigens and triggering five immune responses. 'The idea we are overloading the system is therefore utterly ridiculous,' said Elliman.

The protest is alarming, say scientists, because it has already led parents to reject vaccination for their children. 'That can only lead to deaths,' said Prof Goldblatt. 'Diseases like measles and mumps can, in small numbers of cases, cause serious disease and even kill.'

Doctors worry the campaigns will make ministers and civil servants hesitate over the introduction of more multiple vaccines for the young. These could protect against severe diarrhoea, chicken pox, and human papilloma virus, which can cause cervical cancer in later life.

'The sort of things being said about immunisation cannot help but make parents worry,' said Elliman. 'They shouldn't; vaccines are life-savers.'

Campaigners insisted vaccine overload was real. 'Vaccinations deliver the virus very quickly into the bloodstream in a totally different way from the way in which you breathe in germs,' said Jackie Fletcher, founder of Jabs. 'We want to know what trials have been done on babies to show that the new immunisation plans will be safe. We have been shown nothing at all by way of evidence.'

Vaccinations given to under-twos

Two months: Pneumococcal vaccine and the five-in-one vaccine, which protects against diphtheria, tetanus, whooping cough, polio and Hib (a bacterium that leads to meningitis).

Three months: Five-in-one booster and meningitis C vaccine.

Four months: Boosters for five-in-one, meningitis C and pneumococcal.

One year: Combined Hib/meningitis C vaccine

Thirteen months: MMR (mumps, measles and rubella), pneumococcal booster.

Ban Mercury in Colorado

From The Autism Society of Boulder, Colorado:

ASBC Legislative Alert - In 1999 the American Academy of Pediatrics advised governmental agencies to work expeditiously to remove mercury from vaccines. Seven years on, the influenza vaccine contains mercury in amounts above federal safety guidelines, while influenza vaccine meeting governmental guidelines exist in surplus. In 2003 a three year investigation of mercury in vaccines concluded that it was hazardous and recommended research into mercury as a contributing factor for neurodevelopmental disorders such as Autism, ADD/ADHD, Speech Delay, Alzheimer’s and Gulf War Syndrome be conducted. Recommended research remains incomplete. The Centers for Disease Control (CDC) announced three weeks
ago the continuing investigation into mercury in vaccines and autism.

Expectant mothers and young children deserve to be vaccinated with only the safest vaccines available. Senate Bill 06-099 puts safety above expense and eliminates mercury, a known and well documented neurotoxin, from vaccines given to our most vulnerable population. Give Colorado’s immunization program a shot in the arm. Contact the Senate Health & Human Services Committee in support of SB 06-99. (Sample Letter & Contact Info Below)

SB 06-99 goes to committee on Wednesday, February 15th, Room 352. Testimony is invited and children welcome. Those willing to testify should be brief (2 minutes), must arrive at the capital at 9 am and be prepared to stay until around lunch time. If you can’t come to the capital to show your support, please make your concerns known! Use the sample letter below to contact committee members.

Click Mercury FAQs/Facts to learn more about mercury in vaccines. Act now to remove this neurotoxin from our vaccines.

HBOT: Girl Surprises Mother By Taking First Unaided Steps

Girl Surprises Mother By Taking First Unaided Steps
Family Credits Hyperbaric Therapy Treatments
UPDATED: 11:46 am CST January 23, 2006


MADISON, Wis. -- An inspirational little girl with a rare neurological disorder took another amazing first on Friday. She surprised her mother by walking on her own for the first time.

Watch The Report

News 3 has been following 6-year-old Gracie Kenitz's progress as she continues to defy the odds.
She did so again when she walked to her mother on Friday at the Dane County Regional Airport. Her mother was returning from a business trip.

Gracie, who will turn 7 years old in March, first defied the odds by living past the age of 2 -- the life expectancy of someone with the rare neurological disorder. She's the only survivor of the five known cases in the world, News 3 reported. The disorder is mitochondrial cytochrome c reductase, which starves brain cells of oxygen. For the first three years of her life, Gracie lived in a vegetative state.

Gracie's mother, Shannon Kenitz, said that she was amazed when she began to crawl -- one of the first signs that Gracie was ready to fight. The young girl was never expected to feed herself, which she did. And then, there was the first time she walked with a walker. She survived for her kindergarten graduation as well.

On Friday, Kenitz was shocked when she saw her daughter greet her and she responded with hugs and kisses. While on the 12-day trip, she was unaware that her daughter had begun to walk unaided.

"It's the first time I've seen it in my life ever, with her just walking like a normal kid," said Shannon Kenitz. "I'm a little bit overwhelmed. I mean, this is something that we have hoped for Grace her whole life!"

Her family said that they believe daily hyperbaric chamber treatments have extended her life and improved its quality. Shannon Kenitz's trip was on behalf of the International Hyperbaric Association, and she spoke to parents about the benefits of hyperbaric treatments for children with so-called hopeless conditions, News 3 reported.

"The fight that we have for hyperbaric therapy is well worth it because it saved her life," said Shannon Kenitz. "And now she's walking."

For Gracie's grandfather, Dave Matthews, this is a surprise that he's glad to finally share with his daughter.

"Things are starting to turn into a windfall for us," Matthews said. "We don't take these firsts for granted."

Friday's surprise is yet another first for a little girl who continues to take life step by step, News 3 reported.

Black Box Warning for ADHD Drugs

Strongest warning suggested for ADHD drugs
2 million children are prescribed the drugs every month

WASHINGTON (AP) -- Ritalin and other stimulant drugs for attention deficit hyperactivity disorder should carry the strongest warning that they may be linked to an increased risk of death and injury, federal health advisers said Thursday.

The Food and Drug Administration advisory panel voted in favor of the "black box" warning after hearing about the deaths of 25 people, including 19 children, who had taken the drugs. The vote was 8-7, with one abstention.

One committee member, Dr. Curt Furberg, a professor of public health sciences at the Wake Forest University Baptist Medical Center, said it would be "inappropriate, unethical behavior" not to disclose that there was uncertainty about the safety of the drugs.

The FDA is not required to follow the recommendations of its advisory committees but typically does.

"The committee plainly wanted to tell us certain things ought to be in labeling in a more forceful way," Dr. Robert Temple, director of the FDA's Office of Medical Policy, told reporters after the meeting.

Doctors prescribe the drugs to about 2 million children and 1 million adults a month.

Drugs that would have to carry the warning labels are methylphenidates, which are sold as Ritalin, Concerta, Methylin and Metadate. The labels for Adderall and Adderall XR, both amphetamines, have included the warnings since 2004.

The Drug Safety and Risk Management advisory committee also recommended that the drugs include a medication guide for patients and parents. The vote was 15-0, with one abstention.

Adderall is made by Shire Pharmaceuticals; Ritalin by Novartis Pharmaceuticals Corp.; Concerta by Johnson & Johnson; Methylin by Mallinckrodt Pharmaceuticals; and Metadate by UCB. Various other companies make generic versions of Ritalin.

Novartis said Ritalin, approved by the FDA in 1955, is safe and effective. A company review of more than 50 years of records shows no apparent increase in cardiovascular problems associated with the drug's use, according to Novartis' medical safety director, Dr. Todd Gruber.

He told the committee that the drug's label advises caution in patients with certain pre-existing heart conditions.

The FDA had asked the advisers to consider ways of studying the drugs because agency data suggested the drugs were linked to an increased risk of sudden death and serious cardiovascular problems, including heart attacks.

The committee, however, quickly began debating whether it should consider new warnings for the drugs rather than the need for more studies.

Dr. Steve Nissen, medical director of the Cardiovascular Coordinating Center at The Cleveland Clinic, told fellow committee members they should recommend the black box warning.

Nissen said his suggestion was meant partly to slow what he characterized as the "out of control growth" use of the drugs.

The drugs already carry warnings related to the possible risk they could pose to patients with heart defects.

"We feel this warning is appropriate given our current knowledge of these drugs," said Dr. Gerald DalPan, a division director in the FDA's Center for Drug Evaluation and Research.

The FDA review that found 25 reports of deaths among the drugs' users between 1999 and 2003 also uncovered 54 cases of serious cardiovascular problems, including heart attack, stroke, hypertension, palpitations and arrhythmia. Some of these ADHD drug-treated patients had pre-existing heart conditions or hypertension.

"There's smoke. Does that mean there's fire?" asked Dr. David Graham, a medical officer at the FDA's Center for Drug Evaluation and Research.

"We wouldn't be going through this exercise if we didn't think there was a real possibility of increased risk," Graham told reporters.

The FDA's review found fewer than one reported death or life-threatening injury for every 1 million prescriptions filled for the drugs.

"The decision has been apparently made, and if it's been made, I agree with it, that the reports are not enough to warrant regulatory action," committee member Sean Hennessy said.

Hennessy, an assistant professor of epidemiology and pharmacology at the University of Pennsylvania School of Medicine, ended up voting against recommending additional warnings.

The FDA said the few studies that have looked at longer-term use of ADHD drugs provide little information on those risks.

Also, the agency's analysis of the reports of death and injury only suggests a possible link between the drugs and cardiovascular problems, said Dr. Kate Gelperin, a medical officer in the agency's Office of Drug Safety.

She said the link is not conclusive, nor is it clear whether there is an increased incidence of death or serious injury among people treated with the drugs.

That "is really a question we'd like to have answered," she said.

Sales of ADHD drugs rose to $3.1 billion in 2004 from $759 million in 2000, according to IMS Health, a pharmaceutical information and consulting firm.

About 2.5 million children between age 4 and 17 take ADHD drugs, according to federal survey data cited by Dr. Andrew Mosholder, a medical officer in the Office of Drug Safety. The survey found 9.3 percent of 12-year-old boys and 3.7 percent of 11-year-old girls take the drugs, Mosholder said.

Adult use of the drugs alone grew 90 percent between March 2002 and June 2005, he said.

February 12, 2006

Autism: Really Good Fun!

"I wanted to write a film that showed that sometimes living with autism can be harrowing but that actually most of the time it's really good fun," Pell told reporters."

soooo.... Autism is, most of the time, really good fun?

Anyone know where I can get some of the fun kind of autism?

A new look at autism as Berlin film festival opens
Feb 9, 11:47 AM (ET)
By Noah Barkin

BERLIN (Reuters) - The Berlin Film Festival opened on Thursday with a story of love and loss starring Sigourney Weaver as an autistic woman whose daughter dies in a car crash and Alan Rickman as the man who helps her cope.

With snow falling on the German capital, the bittersweet British-Canadian co-production "Snow Cake" kicked off the 56th annual "Berlinale," regarded as one of the top three festivals in the world alongside Cannes and Venice.

The film, which received scattered applause from Berlin's notoriously blunt audience of journalists and critics, jolts viewers out of their seats early on when a truck ploughs full-speed into Rickman's car, instantly killing a quirky hitchhiker girl he has just picked up.

Wracked with guilt about the accident and weighed down by his own troubled past, Rickman's character Alex forms a strange bond with the girl's mother, a high-functioning but emotionally erratic autistic named Linda.

Weaver, whose diverse film credits include the "Alien" films and "The Ice Storm," spent the better part of a year meeting people with autism to prepare for the role -- an experience she said gave her a new view on the disorder.

"I think we have to begin to see it as a gift," she told a news conference. "We may not understand what it's there for, but if you're in the presence of someone with autism you learn so much. You learn how to play, you learn how to see things, you learn how to experience things and how jarring the world is."

GRIM LINE-UP

"Snow Cake" headlines what critics have described as a strong but morbid line-up of films featuring murder, drug addiction, exorcism and rape.

Weaver and Rickman will accompany Berlinale head Dieter Kosslick down the red carpet on Thursday evening, and other stars due to appear at the February 9-19 festival include George Clooney, Philip Seymour Hoffman and Natalie Portman.

A record number of 18,000 film buyers, sellers, producers, directors, actors and journalists will crowd the screening of 400 films, including "A Prairie Home Companion" from Robert Altman and "The Road to Guantanamo," an account of three British men held at the U.S. prison camp in Cuba.

"Snow Cake," which contains both poignant and off-key moments, was directed by Marc Evans and written by first time screen-writer Angela Pell. Pell was inspired by her own autistic son Johnny, who like Weaver's character in the film loves to eat snow and bounce up and down on a trampoline.

"I wanted to write a film that showed that sometimes living with autism can be harrowing but that actually most of the time it's really good fun," Pell told reporters.

Unlike "Rain Man," the 1988 film that starred Dustin Hoffman as the autistic brother of Tom Cruise, "Snow Cake" strives for a more subtle message about a disorder which is characterized by repetitive acts and a preoccupation with fantasy.

In a dig at those who would try to put autism in a box, one of the film's more disagreeable characters says at one point: "I know about autism, I saw the film."

EOH Finalist for Excellence In Journalism Award

From St. Martin's Press:

“Evidence of Harm” is a finalist for the 2006 The New York Public Library Helen
Bernstein Book Award for Excellence in Journalism

Other nominees are:

Jasper Becker, Rogue Regime: Kim Jong Il and the Looming Threat of North Korea
(Oxford University Press)

Kurt Eichenwald, Conspiracy of Fools: A True Story
(Broadway Books)

George Packer, The Assassin's Gate: America in Iraq
(Farrar, Straus and Giroux)

Anthony Shadid, Night Draws Near: Iraq's People in the Shadow of America's War
(Henry Holt)

The list of finalists will also be posted shortly on the NY Public Library Award webpage at http://www.nypl.org/pr/awardspage.cfm

WINNER TO BE ANNOUNCED IN MAY 2006

AutismFiles.com

So last year I put up a web site and never bothered to announce it. Sorry.

I have been stockpiling autism documents, articles, research papers, hearing transcripts, speeches, power point presentations, etc. etc. for the last two years and thought I should make them of use to people. So I put them up at AutismFiles.com.

Just to be clear, I am not necessarily endorsing all the information found there. I am just stockpiling interesting stuff that I have found.

I will just keep uploading new stuff there, so if you wanna dig through the archives, dig away.

Quote of the Week....

From The US Autism and Asperger Association:
The good physician treats the disease; the great physician treats the patient who has the disease. — Sir William Osler

February 11, 2006

Autism One Radio is Expanding

From Autism One:

AUTISM ONE RADIO IS EXPANDING
www.autismone.org/radio

There
is so much information available that is helpful to getting our children better
and improving their lives - information that they need NOW. Autism One Radio is
pleased to welcome new hosts who will share information important to our
children's health and welfare.

In February, Nicola McFadzean, ND will
begin helping parents with preconception health tips to break the cycle of
autism. Dennis Debbaudt will inform us how to keep our children safe and educate
first responders and others in the Autism Risk and Safety Show. Beth Clay's
Capitol Weather Report focuses on national legislation and policies affecting
the autism and disability communities with complementary discussions regarding
innovative treatments on the horizon. The show will bring interviews with
recognized experts and legislators and provide insights on effective advocacy.
Dr. Timothy Ray debuts with his experienced perspectives on detoxification.
Chantal Sicile-Kira is adding a program to reach listeners in France and other
French-speaking countries. And Emily Iland and her expert guests, alternating
programs in English and Spanish, will help you know what to expect at different
ages and stages and share ideas to meet the challenges. Learn about strategies,
programs and options for older elementary-aged children, teens and adults.
Create an informed plan for the future and feel ready for what lies ahead.

In March, look for the debut of faith-centered programming on Autism One
Radio with Jack & Rebecca Sytsema; Sound Effects with Dorrine Davis; Rhonda
Brunett's Unlocking the Door to Autism; Jane Casey addressing autism with diet -
including practical tips such as how to handle birthday parties - and
detoxification methods, such as infra-red saunas and HBOT; and Larry Kaplan, PhD
who will interview guests from across America on a wide variety of topics
relevant to autism, including biomedical and educational interventions, research
studies, and current events. Other upcoming programs will focus on: explanations
of scientific concepts and terminology from Dr. Lauren Underwood; neurofeedback,
with Dr. Betty Jarusiewicz and Bob Patterson; siblings' perspectives, with
Ashley and Dillan Bono; and nutritional intervention, with consultant Karen
Hubert of Total Health Coach. Also planned are: a new news program, Autism
Global Week in Review, and a multi-part series on the history of autism.

Thank you for tuning in to Autism One Radio.

David Kirby Visits Canada

From David Kirby:

When Autism Today asked me if I would be interested in touring Canadian cities to speak about my book, “Evidence of Harm – Mercury in Vaccines and the Autism Epidemic,” I jumped at the chance. This simmering controversy affects Canada every much as it does the United States, and I am honored to be able to discuss the debate with our northern neighbors.

It will be the first time I take the “Evidence of Harm” message outside the United States.

Why should Canadians be concerned about mercury and their children? There are many reasons. To begin with, many Canadian kids received significant amounts of thimerosal in their vaccines until at least 1994, and some children may have received mercury after that time. In fact, many children born in three Canadian provinces and three territories received mercury in their Hepatitis B vaccines until at least 2002, and perhaps beyond. These exposures were in addition to possible exposure through the influenza vaccine, which is often given to pregnant women and children in Canada.

Mercury Exposures Today

Canadian children who received the flu and hepatitis B vaccine series were exposed to as much as 63 micrograms of ethylmercury in the first seven months of life, nearly equal to the amount of exposure in the UK, until very recently. And prenatal exposure to thimerosal in Canada continues, in the form of the flu shot (25 mcgs). Also, some women may have received injections of thimerosal-containing immune globulin products while pregnant. Prenatal exposure to mercury is thought to be extremely hazardous for the developing fetus.

Meanwhile, a number of other thimerosal-containing vaccines for children are still used in Canada, including some single antigen acellular pertussis and conjugate H. influenzae vaccines, diphtheria-tetanus (DT), and diphtheria-tetanus-acellular pertussis (DTaP) vaccines, all of which contain 25 micrograms of ethylmercury.

All of this comes on top of environmental exposures in Canada, including fish consumption, dental amalgams and air pollution. Some Canadians are exposed to increased levels of mercury from coal-fired plants in Canada and the US. Meanwhile, mining activities are also a significant source of environmental mercury contamination.

Autism in Canada

It is much more difficult to assess mercury exposures and autism statistics in Canada than in the US. To begin with, there are no reliable nationwide autism prevalence statistics in Canada, and it is impossible to say what are the current trends in the number of cases in the country. The rate of Pervasive Development Disorders in Canada is said to be 1-166, roughly the same at the US. However, these numbers include children up to 19 years of age, and many of them would have received mercury in vaccines. The prevalence of full blown autism in Canada, as opposed to PDD, has not been reported publicly.

These are just some of the many topics I will address on my tour. I will also give an update on all new science that has been generated recently and recent action in the US Senate. In addition, information on controversial new treatments for autism – such as chelation and methyl B12 therapy – will be discussed.

Thanks are due to Autism Today for making these important engagements a reality.
Also check in at http://www.autismevents.com/

Tomatos For Autism

Keith Mueller at the Online Tomoato Vine has created a few new breeds of tomatos that he is selling to raise money for Thoughtful House and the National Autism Association. He named two of his new tomatos for Liz Birt and Dr. Haley.

Blurb: Bookify Your Blog

Blurb books your blogs
February 7, 2006 7:53 AM PST

PHOENIX--They say everybody has a book in them and these days, it appears everybody has a blog. Blurb is showing its BookSmart product, which makes it easy to convert a blog to a book. Sounds like a recipe for a terrible book, although maybe a good photo album (if your blog is primarily pictures). And to be fair, BookSmart doesn't only bookify blogs. It's really a tool to create a pleasing, bound document from whatever input you want--blogs, text files, photos, etc. It costs about $30 and it's like Apple Computer's iPhoto albums, but far more flexible: You can make novels, albums, coffee-table-like books, cookbooks and so on. The books look great, and the product looks like a winner.

The Age of Autism: Doctors for mercury

The Age of Autism: Doctors for mercury
By DAN OLMSTED
UPI Senior Editor

WASHINGTON, Feb. 9 (UPI) -- As doctors and health authorities fight state bans on mercury in vaccines and keep giving it to kids and pregnant women, one fact stands out: their certainty.

The image of pediatricians and public officials as valiant defenders of mercury takes a bit of getting used to, given their longstanding efforts to keep the toxic element out of our food, our bodies and the environment.

No reasonable person -- let alone health professional -- would advocate keeping mercury in childhood vaccines unless they were absolutely certain it was an exception to this lethal legacy.

That's especially so because vaccines can be made without the mercury preservative, called thimerosal. You can take it out and still protect the health of American children through vaccination, and if you had a shred of doubt about its safety, surely you would.

If you keep it in, you had better be right.

But what is the real degree of certainty that thimerosal is safe? Is it absolute? Beyond a reasonable doubt? A preponderance of the evidence -- the lesser standard that applies in civil cases but not when someone's freedom (or life) is at stake?

Here's the kind of thing that makes doctors -- most of whom have no more ability than you or I to investigate the safety of vaccines for themselves -- feel so certain. It's a paper titled "Vaccine Safety Controversies and the Future of Vaccination Programs," and it appears in the November 2005 issue of The Pediatric Infectious Disease Journal.

The authors are from the U.S. Centers for Disease Control and Prevention, which recommends the childhood immunization schedule; the United Nations World Health Organization, which oversees the vaccination of tens of millions of people worldwide every year, and several big universities. The report was supported by "unrestricted grants from GlaxoSmithKline Biologicals, Sanofi Pasteur MSD, several universities and other institutions."

"Thimerosal has been used for (more than) 60 years in infant vaccines and in other applications and has not been associated with adverse health effects in the general population, except when persons have been exposed to amounts many orders of magnitude greater than found in vaccines or pharmaceuticals," the authors write.

That's a ringing endorsement of safety (whether it's supported by the data is an issue I'll address in upcoming columns). But keep reading: "It should also be borne in mind that the risks of thimerosal-containing vaccines to the fetus, premature infant and low-weight infant have insufficiently been studied."

Whoa. "Insufficiently studied" -- after more than 60 years of giving thimerosal to pregnant women and babies of every size and shape? Nonetheless, the CDC recommends flu shots for pregnant women and 6-to-23-months-olds and won't recommend thimerosal-free versions. As a result, most flu shots still contain mercury.

Another new study is condescendingly titled, "When science is not enough -- a risk/benefit profile of thimerosal-containing vaccines," by Australians C. John Clements and Peter B. McIntyre in the journal Expert Opinion on Drug Safety:

"Thimerosal is safe as a vaccine preservative, and should continue to be used in settings where accessibility and cost require that multi-dose vials of vaccine are available."

Clements advises the WHO on vaccine policy; McIntyre is director of Australia's National Center for Immunization Research and Surveillance of Vaccine-Preventable Diseases.

"The overwhelming weight of scientific opinion rejects the hypothesis that neurodevelopmental abnormalities are causally related to the use of thimerosal in vaccines," they point out.

This is the kind of ammunition public health officials and the American Academy of Pediatrics are firing back at proponents of mercury bans --"overwhelming" evidence that thimerosal is safe. In Illinois, the state AAP vigorously opposed the ban.

"Though well intended, these bills do not advance public health and could inadvertently diminish our state's efforts at fighting influenza," the AAP said. "Though it is a mercury-containing compound, thimerosal does not pass from the bloodstream into the brain to any significant degree."

The state legislators listened politely to that dubious assertion -- and voted to limit thimerosal in childhood vaccines anyway. But that was not the last word.

As reported by R. L. Nave in the Illinois Times last month: "Citing cost concerns and a potential shortfall for the upcoming flu season, the Illinois Department of Public Health filed for a 12-month exemption to the Mercury-Free Vaccine Act, passed last summer to limit the use of vaccines containing mercury. However, child-health-care advocates who lobbied for the bill's passage are upset by what they believe was a premeditated attempt by IDPH to circumvent state law."

This is what you call chutzpah -- public health authorities thwarting the express will of the people, certain that flu shots will save humanity and mercury never hurt anybody. Does the governor never fire anyone?

Almost lost in this crossfire is the simple fact that in 1999, these selfsame health authorities -- the CDC, the Public Health Service, the pediatricians, the family physicians -- urged drug companies to remove thimerosal from childhood immunizations in the United States as soon as possible.

Most childhood vaccines -- in the United States, not overseas -- are now thimerosal-free. But that's hardly a blanket reassurance, because most flu shots do contain thimerosal.

Yet the CDC is still studying whether thimerosal causes autism.

"We do agree the preponderance of evidence to date suggests there is no association between thimerosal and autism," CDC spokesman Glen Nowak told us last month. But he said CDC Director Dr. Julie Gerberding is committed to exploring all possibilities until the cause or causes of the disorder are identified.

"Dr. Gerberding has made it clear the CDC has not ruled out anything as possible causes of autism, including thimerosal," Nowak said. "Science is a dynamic process. We have continued to fund studies to look at the role, if any, of thimerosal."

Given these caveats, what would you do? Well, there are two maxims of medicine that might apply. "First, do no harm," is the obvious one.

The second, related concept is the precautionary principle which, according to wikipedia.org, "is the idea that if the consequences of an action are unknown, but are judged to have some potential for major or irreversible negative consequences, then it is better to avoid that action."

So: Vaccines don't need mercury. Even government experts acknowledge some possible risks -- to the fetus, for example -- are insufficiently studied 60 years on. A link to autism has not been ruled out. They're continuing to investigate, as they should.

But the doctors and their public and private allies are battling state by state to stop mercury bans, and the CDC won't recommend a thimerosal-free flu shot for kids and pregnant woman. There's a phrase for this approach:

Bombs away.

February 8, 2006

Alan Clark, M.D. 1951 - 2006


Another great loss to our community.
This time I will let Wade to the honors.

February 6, 2006

The Legal Rights of Children With Autism

Interview
The Legal Rights of Children With Autism: An Expert Interview With Jill G. Escher, BA, MA, JD

Medscape Psychiatry & Mental Health. 2005;10(2) ©2005 Medscape Posted 07/28/2005

Editor's Note:
On behalf of Medscape, Randall White, MD, interviewed Jill G. Escher, BA, MA, JD, a California attorney in the field of autism law, whose son has autism.

Like many parents, she met resistance from the school district when she attempted to have her child evaluated for special educational services. To assist other parents who face this situation, she discusses pertinent laws, policies, and procedures intended to protect children with autism.

Medscape: How is autism defined by federal law?

Ms. Escher: Unfortunately, autism is defined in very vague terms. For a definition by federal law, I refer to the Individuals With Disabilities Education Act (IDEA).[1] This act confers the right to a free and appropriate public education to children with disabilities. The first step is to determine whether the particular child is eligible. There are several eligibility categories; some have to do with well-understood problems like blindness, deafness, and speech and language disorders. One of the categories is autism.

There are other pertinent [federal] laws, including section 504 of the Rehabilitation Act,[2] that can help parents obtain specialized services for autistic children. But when it comes to education, IDEA is the primary statute that creates a structure for providing special services. The Rehabilitation Act requires the district to accommodate children with disabilities so that they can be included in ordinary schooling. A typical example of a request via 504 is a child in a wheelchair who cannot go on field trips. On behalf of the child, a parent or guardian would request a 504 plan with the school district to ensure that he or she has equal access for field trips. Usually, because children with autism are deemed eligible for special services under IDEA, they tend not to rely on section 504.

Medscape: When was IDEA passed?

Ms. Escher: Initially, in 1974. It was substantially revised in 1997, and then it was reauthorized with some amendments in 2005. The 1970s was when it was first recognized that there were hundreds of thousands of disabled children who weren't getting any education. At that time, there was no requirement to force the school district to educate these children; so many of them languished at home or in baby-sitting situations.

Medscape: What does the parent of a child with autism need to do to initiate appropriate educational services?

Ms. Escher: First and foremost, if parents believe that their child has some form of autism, it is critical to obtain at least 1 independent expert evaluation for that child. Under IDEA, the school district must provide an evaluation of its own. But, in my experience, the school district evaluations are seldom trustworthy or sufficiently comprehensive. They tend to underdiagnose children, and their opinions tend to be preformed. In addition, the evaluations are performed by school psychologists who generally have little knowledge about both autism and the range of educational interventions available for such children, including which of
these interventions is best for a given child. It is extremely important that parents find the time and, if possible, the money to locate well-qualified experts in autism who can complete a comprehensive evaluation of the child, including recommendations for educational interventions. Universities often serve as an excellent resource for such experts. In California, for example, the University of California at San Francisco, at Davis, or at Los Angeles all have excellent programs with highly regarded experts who routinely do this work. The cost of these
evaluations can run from $700 to $3000. Insurance will probably cover some of the cost, but to get the most appropriate, [unbiased] services, parents usually have to make the investment.

Medscape: What happens once the parent has the evaluation in hand?

Ms. Escher: The parent should give a copy to the special education contact at the school district. The district is obligated to review all independent evaluations submitted by the parents, including from the [primary care] physician, a neurologist, a psychiatrist, or a psychologist. This type of an evaluation usually comes from a psychologist or a psychiatrist. The district has the obligation to review those, but not to agree with them. Well before the individualized education plan (IEP) meeting, everybody on the child's IEP team should review the parents' independent evaluation(s). Here is a likely scenario: The school district evaluates a child and finds that the child is autistic. However, they only recommend a half hour of speech therapy each week and 20 hours in a mixed-disabilities special education classroom. In contrast, an evaluation by an expert who really understands autism and what is best for the particular autistic child recommends several hours each week of one-on-one speech therapy and 25 hours or more in an intensive, autism-specific program at home or at school. So, the IEP team can be faced with divergent recommendations, and it's very important for the parents to have all the evidence there supporting their view of what their child needs.

Medscape: In this type of circumstance, what is the school district required to do?

Ms. Escher: The school district is required to hold an IEP meeting before the child commences services through the district. States vary in the details of the timeline, but on the day children turn 3 years old, they are supposed to start a program with the district. The IEP should happen well in advance of the child's third birthday. I also want to emphasize that the school district is obligated to provide evaluations in all areas of the child's disabilities, so that would include not only the psychological evaluations, but also a speech evaluation and an occupational therapy evaluation, and, in some cases, a physical therapy evaluation. There could be others; it depends on the particular child's situation. Therefore,
parents may want to obtain independent evaluations in these areas as well. Evaluations should not only describe the scope of the disability, but also set forth recommendations for programming. These should be done before the IEP.

Medscape: Parents are permitted to participate in the IEP meeting, correct?

Ms. Escher: Not only are they permitted to; the district is required to make all reasonable efforts to ensure their participation. Parents are considered full and equal participants at an IEP meeting. But, while that sounds very good on paper, parents are not usually treated as full and equal participants because the school district regularly withholds vital information about their programming and their policies. In certain cases, the district has even withheld information about the child, and that has affected what services were offered.

Medscape: How commonly do parents meet resistance to implementing the experts' recommendations?

Ms. Escher: Almost always. In autism, I don't think I've ever heard of a case when a child with autism was routinely given the set of services that the independent experts had suggested. It's all about money. There was a recent federal report showing that a child with autism costs a district something like $19,000 per year, and in California, the number is substantially higher, especially for younger children with autism -- about $25,000-$90,000 annually. It's extremely expensive because the autistic child, especially when young, will often require one-on-one intervention.

Medscape: What is the procedure to resolve the difference between parents and the district?

Ms. Escher: The procedure is very complicated. If at the IEP meeting (or as often happens, series of IEP meetings), the parents are still unhappy with what the district is wiling to provide, the parents have a couple of choices. The particular procedures vary a little bit from state to state, but the parents generally have the option to file a complaint with the state, which is not the preferred choice. They can ask for mediation, which is sometimes successful. But usually, if this is an irresolvable conflict with the district, the parents will file for a due process hearing -- in other words, an administrative appeal in front of an administrative law judge who works through the state department of education. I would say that in excess of 80% of the time, after parents file for a due process hearing, the dispute is settled. Parents who hire an attorney have a much higher
success rate than those who choose to go it alone. Going for due process, while it is the dispute service authorized by law, can be very time-consuming and expensive for parents.

Medscape: And what if parents can't hire an attorney?

Ms. Escher: Well, that happens a lot. Parents can hire an advocate, who is a layperson schooled in IDEA and knowledgeable about education services. In most states, there are many advocates willing to do this sort of work. Often, the parents just go it alone and look for resources that can help them on the Web. One really good source for parents is www.wrightslaw.com (http://www.wrightslaw.com/) .[3] It's an excellent site; I highly recommend that parents visit it. (Note: Ms. Escher[4] also has established a valuable Web site for parents, _http://www.autism-law.com_ (http://www.autism-law.com/) .) Unfortunately, this is a system like many in the world where it helps to have money to hire a lawyer. If you prevail, you are entitled to at least a portion of your attorney's fees.

Medscape: How equipped are most school districts to meet the needs of autistic and developmentally disabled children?

Ms. Escher: The answer is that except for a few areas, the quality and quantity of services are very lacking. There's a dramatic shortage of teachers who are trained and experienced to work with autistic kids. But I think there's also something else a bit more sinister at work -- school districts have a very strong disincentive to provide quality autism programs because the last thing they want is to gain a reputation for excellence in autism. They don't want more autistic kids to move into the district. More autistic children means more cost. In addition, there are no
standards for providing autism education. Federal law is entirely procedural; IDEA has not 1 word that specifies anything about the substance of what needs to happen in the classroom. The idea that Congress had is that these kids have individualized needs. In addition, there are no standards for providing autism education. Federal law is entirely procedural; IDEA has not 1 word that specifies anything about the substance of what needs to happen in the classroom. The idea that Congress had is that these kids have individualized needs: We [Congress] can't possibly prescribe appropriate programming for every child; so, let's set out a series of procedures for districts and parents to engage in, and hopefully, in this tussle over each and every aspect, the process will yield an appropriate program for a child Medscape: Has there been an effort for professionals, such as teachers and psychologists, to create a consensus on the best approach for autistic children in school?

Ms. Escher: The most important one to date is the National Academy of Sciences book called Educating Children With Autism, in which a group of about 14 autism specialists tried to synthesize best practices.[5]

Medscape: Have any school districts adopted them?

Ms. Escher: The book didn't get into a lot of specifics. It recommended a minimum of 25 hours/week of intensive intervention 12 months a year. The book really relates to children age 8 and younger. There's an important effort that just got under way called the Autism Treatment Network, which has a Web site.[6] It is a collaboration among 6 universities to come up with some treatment standards, which are going to focus on treatment by physicians. But, my understanding is that they are looking at educational interventions as well. Naturally, no one set of standards is going to provide guidance for every single autistic child. However, I think that there should be some joint understanding of minimum practices. Right now,
there is so much debate and controversy, it is hard to put standards together. Every time a parent walks into an IEP meeting, they have to reinvent the wheel because there's not a single word in any law about what a school district should do for an autistic child.

Medscape: I wanted to ask if you have any advice for people in rural areas with autism, because I'm sure it is even more difficult.

Ms. Escher: It is extremely difficult. People in rural areas often have to devise a program on their own. Frequently, where there really aren't any autism programs, the parents pay out of pocket to get a therapist trained in applied behavioral analysis or similar techniques, and that therapist will then train others. The parents can then ask the school district for reimbursement.

Medscape: Is reimbursement usually available?

Ms. Escher: Yes, reimbursement is available, but parents have to go through certain procedures to get that. They have to make the request for services and be denied; then after they provide written notice to the district of their intent, they can go ahead and seek reimbursement through a due process hearing.

Medscape: Is there anything more you think people should know?

Ms. Escher: Unfortunately, when parents have a child with autism, they have to learn not only how to adjust their lives and how to care for a child with a catastrophic disability; they have to learn how to be quasi-attorneys. We have a system based entirely on procedure, and parents should make all efforts to learn about the procedures and use them to their advantage.

References

1. US Department of Education. Individuals with Disabilities Education
Improvement Act (IDEA). 2004. Available at:
_http://www.ed.gov/policy/speced/leg/edpicks.jhtml_
(http://www.ed.gov/policy/speced/leg/edpicks.jhtml)
Accessed June 30, 2005.
2. US Department of Education. The Rehabilitation Act. Available at:
_http://www.ed.gov/policy/speced/leg/edpicks.jhtml_
(http://www.ed.gov/policy/speced/leg/edpicks.jhtml) Accessed June 30,
2005.
3. Wright PWD, Wright PD. Wrightslaw. Available at:
_http://www.wrightslaw.com/_ (http://www.wrightslaw.com/) Accessed May 5,
2005.
4. Escher J. Autism Law: A Parent's Guide to Federal and California
Special Education Law. Available at: _http://www.autism-law.com/_
(http://www.autism-law.com/) Accessed June 30, 2005.
5. National Research Council, Committee on Educational Interventions
for Children with Autism. In: Lord C, McGee JP, eds. Educating Children
With
Autism. Washington, DC: National Academy Press; 2001. Available at:
_http://books.nap.edu/openbook/0309072697/html/index.html_
(http://books.nap.edu/openbook/0309072697/html/index.html) Accessed May 5,
2005.
6. Autism Treatment Network. Available at:
_http://autismtreatmentnetwork.org/about.htm_
(http://autismtreatmentnetwork.org/about.htm) Accessed May
5, 2005.

Funding Information
Supported by an educational grant from Janssen.

Jill G. Escher, BA, MA, JD, Attorney-at-Law, San Jose, California

Disclosure: Randall White, MD, has disclosed that he owns stock, stock options, or bonds in Novartis AG ADR, Millipore Corporation, Novo Nordisk, and Sanofi-Aventis.

Disclosure: Jill G. Escher, BA, MA, JD, has disclosed no relevant financial
relationships.