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TACA E-Newsletter

March 2010 #1

Here is your update on TACA (Talk About Curing Autism). If you are new to our site... WELCOME! This newsletter is produced two to four times each month.

We are an autism education and support group. We want to make this e-newsletter informative for you. As always, contact us your thoughts and/or questions so we can improve it.

We focus on parent information and support, parent mentoring, dietary intervention, the latest in medical research, special education law, reviews of the latest treatments, and many other topics relating to autism. Our main goal is to build our community so we can connect, share and support each other.

Talk About Curing Autism (TACA) provides general information of interest to the autism community. The information comes from a variety of sources and TACA does not independently verify any of it. The views expressed herein are not necessarily TACA’s.

1. Find a TACA Meeting

Come to a TACA Meeting!

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, CDs and DVDs 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.

2. Join Us for Coffee Talk!

Come and receive some extra support or to
chat all topics related to autism and meet
other TACA families at these informal,
monthly get-togethers.

  

3. Daily Autism Updates for Families

All news related to autism: AgeofAutism.com

4. Court ruling on autism re-ignites fight for one local mother

Hetty Chang reporting, MyNews3.com

Autism is a frightening diagnosis without a cure, often leaving parents with a lifetime of medical burdens – and questions.

Now, a recent study has uncovered that one in every four parents believe vaccines somehow cause autism to develop in healthy children.

“I took him in at 18 months. We just took him in to get the vaccine. By the time he was two years old we knew he had autism.”

Nicole Kalkowski says although it wasn’t her first thought, in hindsight, things were very clear.

“It’s when you look back and realize after he had been sick after a couple of months, the day he got sick was the day he was vaccinated.”

When she saw the light change in Ryan’s eyes, that’s when she said she knew the truth. Kalkowski says that day changed her son, and her life, forever.

“It was things like not responding to his name right away when I called him, not giving me great eye contact.”

Kalkowski stands on one side of a heated medical debate, the one linking autism to Thimerosal, a Mercury-based preservative found in multi-dose vaccines.

She insists, however, that she’s not against vaccines.

“We just want parents to do their homework, to understand what they're doing and to ultimately trust their gut.”

The push for parents to do their research on vaccines is one focus of Kalkowski’s group Talk About Curing Autism (TACA). The group is now speaking out on a recent ruling involving three separate families who brought their research to a federal claims court.

Friday, that court denied the parents compensation from the National Vaccine Injury Compensation Program.

The special master assigned to the case ruled against the parents’ claim that vaccines triggered autism in their children on the grounds that the argument was “scientifically unsupportable.”

The families involved in the recent federal court ruling plan to appeal, and Kalkowski claims the system is severely flawed.

“Keep in mind this was a government funded program with government science used. “

Furthermore, this ruling follows the same court’s judgment on a similar case last year in which the institute ruled out any causal link between autism and vaccines.

But in the highly publicized Hannah Poling case, heard outside the Omnibus Autism Proceedings, the court ruled in favor of the families.

The research on autism varies as much as the cases, leaving those families living with autism a lifetime of questions.

“Are they given a fair case? Are they really given justice?”

But Nicole Kalkowski says she will never give up on seeking the answers.

The vaccine court was created in 2002 to establish procedure for addressing claims of thousands of families living with autism. Some experts say the vaccine court requires a lower standard of proof when compared to civil courts.

5. Stress can overwhelm the parents of children with autism

BY SAM MCMANIS • THE SACRAMENTO BEE • FEBRUARY 20, 2010

SACRAMENTO, Calif. — They are both Harvard-educated and in their late 30s — he a cardiologist, she a pediatrician. They have three children, a boy and two girls, with a fourth on the way. They have a spacious home.

Such a charmed life. Such blessings to count. Such a model family.

What you wouldn't know until you cross the threshold at Howard and Tracey Dinh's home is the stress that colors their existence like dreary wallpaper, the challenge of making it through each day with at least one nerve left unfrayed, the anxiety that takes hold whenever they try to exhale.

The Dinhs are the parents of an autistic child, Austin, 7. They love him dearly, care for him constantly and see cognitive improvement almost daily.

But they know Austin won't live a life like Allie, 4, and Anna, 2. Which means their family life — not to mention their careers — never will be quite what they pictured as a couple starting out. Which is fine. They came to terms with that long ago.

That doesn't mean there isn't stress. There's plenty of it. "It's one of those things that's all-consuming," Tracey says.

What you also wouldn't know until you meet with the Dinhs is how lucky they consider themselves, how thankful they are that their professional backgrounds provide a buffer against money worries.

"I can't imagine what it's like for families where they don't have the financial means, or even a single parent," Tracey says. "In a lot of ways, we are fortunate."

Yet the Dinhs are not immune to caregiving burdens. Some things transcend class distinctions.

Researchers at the University of Washington Autism Center found that parents of autistic children show higher stress than those whose children had other developmental-delay issues.

There are hundreds of thousands of such parents: The Centers for Disease Control and Prevention says autism spectrum disorder affects 1 of every 110 U.S. children.

It's not so much the daily living skills — feeding, dressing — that trigger stress, says Dr. Annette Estes, the lead researcher. It's dealing with the erratic, sometimes violent "problem" behavior.

"Many of the parents I meet may be experiencing internal stress, but they respond incredibly adaptively," Estes says. "They're out there learning neurology and genetics and treatment that's specialized. They are using that stress to provide their kids the most optimal chance.

"They are really a high-functioning group of families. But there are people who just get slammed by this."

There Are Tense Moments

A University of Wisconsin study, published last year in the Journal of Autism and Developmental Disorders, reported that mothers of autistic children showed abnormally low levels of cortisol, a hormone released as a protective response to stress. Researcher Marsha Mailick Seltzer has compared chronic stress profiles of these mothers with those of combat soldiers.

For parents such as the Dinhs, caring for Austin takes equal parts patience and perseverance, with a healthy sprinkling of humor.

It's the daily challenges of tantrums that can weigh on them. "You get so overwhelmed and so emotionally distraught that I tell myself I need to step back, that some things are just beyond my control and I need a break, even if it is just a second or two, just to reorient myself and then come back," Tracey says.

When Austin's development seemed unusually slow as an infant and toddler, the Dinhs said they initially were in denial. They were living in Los Angeles while Howard was doing research at UCLA Medical Center.

"I'm a worry wart," Howard says. "My sister would say, 'Hey, how come we call to (Austin) and he's not looking at me?' I got angry. I said, 'You think there's something wrong with my own child?' I remember telling (Tracey), 'Would you ask the pediatrician if he has autism?' She got real angry at me, saying, 'Hey, I am a pediatrician! Why don't you ask me?' "

After meeting with several experts, a diagnosis came back. That's when the Dinhs decided they needed to change cities and career goals.

By this time, Allie had been born, and they decided that Howard had to relinquish his fulfilling, but less financially rewarding, faculty and research position to join a heart practice. Tracey would sacrifice a full-time pediatric practice to devote most of her time to caring for Austin.

They relocated from Los Angeles to the less-expensive Sacramento. Howard often works double shifts and weekends at Regional Cardiology Associates. Tracey works less than half time at Kaiser Permanente in south Sacramento, now that Austin is old enough to be in school.

"There are tiny moments I get a little resentful," Tracey admits. "I feel like my career was put on the second burner. But I realized I needed to focus on (Austin)."

The couple has adjusted to the routine. Still, there are tense moments.

"(Howard) feels out of the loop," Tracey says. "He goes to work and has the burden of providing for the family. Because I deal with Austin's therapies and get really stressed sometimes, when (Howard) comes home and asks, 'What have you guys been working on. What progress has been made?' The first thing I want to think about is, 'I don't even want to think about it.' "

Kids Keep Families Together

But the stress, in some respects, has strengthened their bond, Howard says. He recalls times when Austin was younger that they alternated staying up all night with their son, trying to get him to fall asleep.

"We were acutely aware of the statistics on families with a child with autism," she says.

"They're more likely to divorce. Just knowing that, even with moments when I get angry — and every family goes through that — what really keeps us together is just the thought of him. One person caring for him would be impossible.

"I guess it's really true that kids can be the glue to hold families together when, on the spur of the moment, you're thinking, 'OK, wouldn't it be nice to just take off?' "

Just when it seemed as if the family dynamic was settling a bit — Austin is now talking and in school; the girls are thriving in preschool — Tracey got pregnant. She's due in July. The Dinhs had planned to stop at three but, well, these things happen. Tracey and Howard say they're excited, but they also admit to feeling anxious.

"If the fourth child is a boy, we know the chances are higher" for autism, Howard says.

Life, Tracey says, was so chaotic when Austin was younger that "I didn't have time to realize I was pregnant and worry about it."

"Now," she adds, "I have to put myself in a more positive mind-set. Otherwise, those thoughts and questions will come at you nonstop."

6. The Search for Autism’s Missing Piece

Autism Research Slowly Turns Its Focus to Environmental Toxicity

Autism cases are on the rise. Or so the most recent data would have us believe. The Centers for Disease Control and Prevention (CDC) found that 1 in 100 children in the U.S. have been diagnosed with autism spectrum disorder (ASD)—up from 1 in 150 in 2007. A study in the journal Pediatrics in October 2009 revealed similar numbers—parents of 1 in 90 children reported that their child had ASD. With boys, the rate of ASD was 1 in 58. Without a doubt, autism is the country’s fastest-growing developmental disability, affecting more children than cancer, diabetes and AIDS combined. Still, in dealing with a childhood disorder that ranges from “highly functioning” to uncommunicative, and such a long list of potential triggers and treatments, even the numbers themselves are subject to questioning.

“It irritates me to no end that we still argue over whether there is an increase in incidence,” says Michael Merzenich, Ph.D., a neuroscientist at the University of California San Francisco who has pioneered research in brain plasticity (essentially, retraining brains) and leads the brain-training software company Posit Science. “I think there is lots of evidence for increased incidence,” Merzenich says. “Overwhelmingly it supports that there are things in the environment that are contributing to the rate of incidence. But people still argue.”

Doubters point out that autism is better understood today and more frequently diagnosed. Some have even suggested that an autism diagnosis may be a means to an end—a way for parents to get the immediate speech and physical therapies their children need to prevent long-term delays. Massachusetts-based health writer Lisa Jo Rudy, mother to one autistic child, Tom, 13, as well as to a 10-year-old daughter, Sara, is one such skeptic. “Are we simply calling what used to be called being a ‘dweeb’ autism?” Rudy asks. The National Institute of Mental Health writes: “It is unclear from the report in Pediatrics whether the 1 in 90 estimate is measuring a true increase in ASD cases or improvements in our ability to detect it.”

Researchers like Merzenich say the waffling over numbers is beside the point—too many children are living with the disorder, and not enough research is focusing on what’s causing it or how best to treat it. The term “autistic” was not even part of the modern lexicon until it was introduced by Hans Asperger and Leo Kanner in the 1940s—the word itself (containing the Greek autos) describes the self-absorption that is a hallmark of the disorder. While it takes many forms, autism affects social interaction and communication and leads to the development of intense habitual interests. Often, after a year of seemingly normal interaction, autistic kids will fail to respond to stimuli, make eye contact or turn at the sound of their name. They may not talk readily, or they may repeat themselves incessantly. They are likely to follow compulsive behavior, such as shaking their hands, stacking objects or repeating daily activities the exact same way each day. The treatment is years of intensive—and expensive—therapy.

Richard Lathe, Ph.D., a molecular biologist and former professor at the University of Strasburgh and Edinburgh University who wrote Autism, Brain, and Environment (Jessica Kingsley Publishers), calls the latest autism cases “new phase autism.” Explaining the term, Lathe says, “The rate of autism was quite low between the 1940s and 1980s. The beginning of the 1980s saw a marked increase in the incidence and prevalence of autism. Rates have gone up at least tenfold. It indicates that it can’t just be genetic—it must be environmental.”

The Chemical Connection

Gavin Schultz has been steadily improving from autism since beginning biomedical treatments.

The debate over the connection between vaccinations—particularly those preserved with mercury-containing thimerosal—and autism has been widely publicized, and is still the subject of controversy. The connection makes sense, says Lathe, because “People who suffer from lead or mercury poisoning appear to be autistic.” Thimerosal is still found in flu vaccines and the most recent H1N1 or “swine flu” vaccine, as well as a few single-dose vaccines. But vaccines are no longer the biggest mercury culprit, though aluminum, which is used as an adjuvant (an agent to stimulate the immune response) in many vaccines remains a concern.

James Adams, Ph.D., the head of the Autism/Asperger’s Research Program at Arizona State University says, “The two major sources of mercury are from dental fillings and mercury from seafood...And that in turn comes from the environment, from coal-burning power plants and other sources [including waste incinerators]. It just happens to concentrate in large fish because they’re pretty high in the food chain.”

Cindy Schultz lives in Wisconsin not far from a coal-powered plant. She works with the nonprofit Autism Network through Guidance, Education & Life (ANGEL Inc.), which provides grants for autism treatments. Her oldest son has Asperger’s syndrome, a milder form of autism; her younger son, Gavin, has a more severe form of autism. Her three daughters have not been affected. Still, Schultz believes that “the air is better than it was 40 years ago,” and blames vaccinations—not pollution—for her sons’ disorders.

One National Health and Nutrition Examination Survey from the CDC that looked at mercury in the bloodstreams of women found that about 3% of women of childbearing age studied from 2003 to 2006 had at least 5.8 parts per billion (ppb) of mercury in their blood. The Environmental Protection Agency (EPA), meanwhile, “has determined that children born to women with blood concentrations of mercury above 5.8 parts per billion are at some increased risk of adverse health effects.” And that’s just one toxic chemical of concern. Others include air pollutants like lead and sulfur dioxide, water pollutants like arsenic and pharmaceuticals, and environmental toxins like phthalates (plasticizers), Bisphenol-A or BPA (used in some plastic water and baby bottles), and flame retardants known as polybrominated diphenyl ethers or PBDEs, which are used in everything from electronics equipment to plastics and furniture.

“The problem is these chemicals are everywhere,” says Merzenich. “They’ve looked at levels of contamination from PBDEs in the polar regions and there are significant airborne levels everywhere. You really can’t escape them.” At the same time, he urges parents to avoid putting old plastic baby furniture, old mattresses and used electronic equipment in a baby’s room, to keep potential PBDEs at bay.

In total, there are 3,000 chemicals that the EPA classifies as “high production volume.” In other words, chemicals that the U.S. imports or produces at a rate of more than one million pounds per year. According to the EPA, 43% of these chemicals have not been tested for basic toxicity. In 2007, The Oakland Tribune arranged to test the body burden—or level of chemicals—in the blood of a Bay Area family that was attempting to live a chemical-free life. They found surprisingly high levels of PBDEs, particularly in the children. While the mother had 138 ppb and the father 102 ppb, their four-year-old daughter had 490 ppb and their 20-month-old son, 838 ppb. In the case of lab rats, at 300 ppb the rats exhibit behavioral changes.

Progression & Recovery: Gavin Schultz was most affected by autism between two and five years old. Treatments have helped
“Our current situation is an incredibly backward position that everything is OK until there is an unequivocal scientific demonstration that it ain’t safe,” says Merzenich. “And really the only thing that protects us at all is the threat of lawsuits...The onus should be on the manufacturer and distributor of any new chemical to demonstrate that it’s safe in terms that are acceptable to the public welfare. And certainly that includes that it’s not going to impact the life or development of the fetal child.”
What the Studies Show

Sudhir Gupta, M.D., Ph.D., Chief of the Division of Basic and Clinical Immunology at the University of California, Irvine, once famously remarked in regards to autism: “Genes load the gun and environment pulls the trigger.”

But the large majority of autism research is focused on genetics, despite the fact that there are known environmental factors that impact the likelihood of the disorder. Living in an urban, as opposed to rural, area increases the incidence of ASD 4∏ times according to one Texas study. There are other chemicals that are known to increase the likelihood of children born with autism, too, including maternal smoking, drug ingestion—from cocaine to anticonvulsants—and excess alcohol consumption by pregnant women.

Still, says Adams, “Most of the autism research is focused on problems in the brain, on genetics and on behavioral treatments. There is still extremely little money out there for looking into environmental issues. And there’s also extremely little money out there for looking at treatments for autism.”

The nonprofit Environmental Working Group, in a detailed report about the neglect of autism research’s focus on environmental factors, points out that “Hundreds of studies have explored the genetic roots of the autism epidemic, but none has uncovered a single gene or vulnerability to account for more than a fraction of cases.”

But the research that is taking up the environmental challenge is uncovering surprising answers—particularly in relation to the link between heavy metal toxicity and autism. Some of this research focuses on porphyrins: chemicals that increase in the urine in response to heavy metal toxicity. Turns out that autistic kids have more porphyrins in their urine following chelation—a detoxing process done by administering a drug such as dimercaptosuccinic acid (DMSA) used to treat lead poisoning—than do typical kids. The antioxidant glutathione—critical for the body to excrete metals—plays a role, too. Glutathione typically works by binding to heavy metals, which the body then knows to eliminate. In 2004, researcher Jill James, Ph.D., of the Arkansas School of Medicine, led a pioneering study that showed autistic kids had significantly less glutathione than typical kids—which put their bodies in a state of “constant oxidative stress.” In other words, autistic kids were genetically predisposed to have low glutathione levels, making them particularly susceptible to heavy metal toxicity. That toxicity—whether in the form of vaccines, fish, dental amalgams, air pollution, tainted water or other environmental toxins—might provide the “toxic tipping point” to render a child autistic.

Adams has done several studies looking at the role of toxic metals in children with autism, with similar findings. In one, he used DMSA in 221 kids with autism versus 19 controls, comparing the amount of heavy metals evident in the children following the detoxing process. “That first study showed that kids with autism dumped three times as much mercury as typical children did,” Adams says, “strongly suggesting that mercury was a major issue.” Another study found that the baby teeth of children with autism had twice as much mercury as did the teeth of typical children. It was an especially difficult finding for Adams, who had shifted the focus of his chemical research to autism when his daughter Kim, now 17, was diagnosed with the disorder in the late 1990s. His daughter’s baby teeth were included in the study—and the mercury level in her teeth was the second highest in the study. Even with extensive therapy, she still only functions at a third-grade level. A “Dateline NBC” video from 2006 about Adams’ research and family shows Kim singing along to a Barney kids’ video that she’s seen “thousands of times,” following detailed instructions to brush her teeth, and using a series of pictures pinned to her door to make her bed.

Adams’ findings point to more than just the fact that autistic kids seem less able to excrete mercury and heavy metals, although that’s part of the problem. He also found, looking at the medical history of autistic kids, that they were much more likely to have been given multiple rounds of oral antibiotics as infants, mostly due to increased ear infections. And that impacts mercury excretion, too. “Oral antibiotics in rats have been shown to greatly decrease the rate of excretion of mercury,” says Adams. “So the half-life for excretion goes from 10 days to 100 days in rats on oral antibiotics.” Adams relates that his own daughter was on oral antibiotics for six months continuously as an infant. Dr. Jonathan Finkelstein, a staff physician with Children’s Hospital Boston reports that antibiotic use in children is down 25% to 40% since its peak in the early 1990s (when children took an average of three antibiotics a year in some places), but says the first-line defense for ear infections remains the antibiotic Amoxicillin, despite the fact that the American Academy of Pediatrics encourages the practice of “watchful waiting,” or allowing certain infections to play out for 48 to 72 hours.

Dr. Jerry Kartzinel, who wrote the question-and-answer book Healing and Preventing Autism (Dutton) with celebrity and autism treatment advocate Jenny McCarthy, calls the frequent ear infections common in autistic babies and young children a “red flag” that indicates something amiss with the child’s immune system. “The medical community as a whole,” he tells McCarthy in the book, “should have been evaluating this child’s immune system, probably after the third infection requiring an antibiotic, to see what was not working properly. But that’s rarely, if ever, done.”

The Biomedical Approach

Shauna M. Layton, founder of Together In Autism, with her son, Hayden Michael.

Kartizinel, along with Adams, belongs to a network of doctors and researchers under the umbrella Defeat Autism Now! DAN!, as it’s known, is a set of practices for looking at autism from a biomedical or whole-body perspective—taking a holistic approach to both underlying factors and treatment. These are medical personnel who speak openly about potential chemical triggers for autism, from vaccines to mercury-tainted fish, who advocate treatments such as chelation therapy, gluten- and casein-free (wheat- and dairy-free) diets and even hyperbaric oxygen therapy, in which oxygen is administered in a pressurized chamber. They tend to be anti-drug and pro-supplement, and they insist that autism is, indeed, a treatable condition.
Needless to say, they’ve sparked a lot of controversy. The autism community tends to fall into two camps—those who believe in a holistic cause and cure for their child’s autism and those who trust in the established medical protocol, which includes a mixture of drugs with speech and physical therapies. Amid the accusations of “quackery” on the one side and “money-driven medical industry” on the other, it can be difficult to find a balanced voice.

Shauna M. Layton founded the online support group Together in Autism (T.I.A.) after her son, Hayden Michael, was diagnosed with autism at 2∏. While she and her group’s followers fall almost exclusively into the DAN! camp, Layton says, “We are not anti-vaccine. There are many vaccines that are necessary to one’s protection and health. We are pro-awareness for those injured or who may have an underlying issue that maybe cannot tolerate a shot.” She includes her own son as one who she believes was vaccine-intolerant, because he was put into intensive care following birth, but received the normal vaccination schedule, and his condition (first noticeable at six months) became worse with each progressive shot. Hayden was also prone to frequent ear infections and given regular rounds of antibiotics.

DAN! doctors, despite their detractors, tend to focus on one physical attribute common to autistic kids that’s scientifically indisputable: As many as 70% of them have something wrong in the gut. Common maladies include what’s known as “leaky gut syndrome,” in which the intestinal lining is damaged, allowing toxins and waste to enter the bloodstream; bowel inflammation and an overgrowth of harmful bacteria and yeast. These kids can be constipated often, or prone to chronic diarrhea. Stools are often horrible-smelling (well beyond the norm) and the act of pooping can lead to bleeding. And besides the cramping, pushing-on-their-bellies behaviors, autistic kids with these complications often have outward physical signs: bloated bellies, dark circles under the eyes, pale complexions.

Back in 1999, a study of 36 severely autistic kids by doctors at the University of Maryland School of Medicine found the first link between autism and a series of gastrointestinal disorders. Nearly 70% of the kids had acid reflux and 58% had chronic diarrhea because they could not properly absorb carbohydrates. Many of the kids could not sleep through the night as a result of their constant discomfort, which in turn was thought to contribute to their behaviors of irritability and aggression. Then, in March 2009, researchers found what looks to be a gene variant linking these two conditions. Published in Pediatrics, the researchers found that the specific gene variation called the MET C allele affected both brain development and gut processes. After studying 214 families with at least one child with autism, researchers found that only kids with both autism and gastrointestinal problems had the gene in question. In a subsequent article in U.S. News & World Report, the author concluded, “This line of research may turn up targets for new drugs.”

Diets, Not Drugs

But DAN! doctors and their patients aren’t waiting for the next miracle drug—they’re finding sometimes extraordinary results with a combination of strict diets, supplements and other biomedical treatments that heal the underlying gastrointestinal issues. “We always feel that healing the gut is the first step [in treating autistic kids],” says Dr. Kenneth Bock, who runs the Rhinebeck Health Center in Rhinebeck, New York, and wrote the book Healing the New Childhood Epidemics: Autism, ADHD, Asthma and Allergies (Ballantine Books). Bock’s treatments range from extensive food allergy testing to chelation, supplements and gluten-free, casein-free (GFCF) diet recommendations (see interview, page 33). The waiting list to be seen there can be six months or more.

The GFCF diet, which involves eliminating all wheat and dairy products, is often the first line of treatment—and it’s daunting. Bock’s book of no-nos includes bread, hot dogs, pizza, pudding, cereal, chicken nuggets, pasta, waffles, cheese, ice cream, yogurt—pretty much all the foods picky toddlers prefer. But parents today have an easier time than in the past—even mainstream grocery stores sell standard items that are GFCF now, and substitutes include rice, buckwheat (for pancakes), soy milk and rice ice cream. Not to mention a healthy infusion of vegetables, disguised if necessary. In fact, the book McCarthy penned with Dr. Kartzinel includes quite a few hot dogs on the GFCF menu (including Ball Park and Kahn’s), Lay’s potato chips, Boar’s Head lunch meat and other readily identifiable, kid-approved items.

Parents of autistic kids rave about the results. “First we removed casein,” says Layton of her autistic son, Hayden Michael. “It was like he was going through detox, he was so addicted to it. After a week he started asking the ‘who, what, where, when, why’ questions and answering them as well. Prior [to the diet] he would only say a few words to express what he wanted or needed and it was pretty much a guessing game.” Six months later, she had Hayden on a full GFCF diet, and says another six months in, he was speaking in sentences. After adding fish oil—given to autistic kids undergoing this treatment for their omega-3 essential fatty acids, which boost brain function and reduce inflammation—Layton says she was “blown away.” “My son was doing all things now to an extreme in a neurotypical manner,” she says. But Layton cautions that her son is still on the path to recovery, and that every child’s response to such treatments is individualized.

Among the many supplements recommended to autistic kids, B12 is high on the list. Nearly every cell in the body uses B12, and the vitamin promotes proper functioning of the nervous system and gastrointestinal system. But it’s not easily absorbed, so the best way to get it is through a shot. “This form of therapy seems to really allow a bloom in language, concentration and focus in many children,” says Dr. Kartzinel in the book. McCarthy’s autistic son, Evan, is one who had a marked verbal response following B12 injections.

Chelation therapy, in which DMSA or another drug such as ethylenediaminetetraacetic acid (EDTA) is administered in order to remove lead or heavy metals from the body, is a highly controversial treatment. In several chelation cases, a person was administered the wrong drug (disodium EDTA instead of calcium disodium EDTA) and died as a result, as their bodies were fatally robbed of calcium. The most recent was 5-year-old Abubakar Tariq Nadama, who died in 2005 while receiving chelation therapy in Pennsylvania to treat his autism.

But doctors who support the practice argue that past medicinal mix-ups should not compromise what looks to be a promising treatment. Says Adams: “The fact is that many families have used chelation. According to the Autism Research Institute, which has collected data from over 25,000 families, over 50 treatments, chelation therapy is ranked number one in terms of effectiveness by families.”

There was enough positive response in regard to chelation as a treatment for autism that the National Institute of Mental Health decided to conduct a study on its use in 2006. By 2008, the agency changed its mind—saying in a statement that “there was no clear evidence for direct benefit to the children who would participate in the chelation trial and that the study presents more than a minimal risk.” Adams calls the agency’s change in decision “very sad.”

Still, as controversial treatments go, chelation can hardly be considered the fringe. Other parents seek out hyperbaric oxygen therapy—in which a child is administered oxygen inside a submarine-esque pressurized chamber that allows them to take in additional oxygen. It can take 40 treatments or more to realize any improvement in the child’s language, so some parents have gone so far as to rent or purchase these chambers for home use. Prices range from $1,500 per month to rent a small unit to up to $20,000 to buy a large one. Says Lathe: “I don’t know about the long-term benefits, but [hyperbaric oxygen therapy] does have short-term benefits in normal people.”

Marty Ann Kelly, a mother from Maine affiliated with T.I.A., bought a mild hyperbaric oxygen chamber for her home to treat her son, Kenneth, now 8 years old. She has also taken him to the Institute of Cellular Medicine in Costa Rica for stem cell injections taken from umbilical cord blood. There, he was injected with 24 million stem cells over four days; and she plans to return. “We believe this will bring him to recovery,” she says, adding: “We are fanatical about understanding autism, what is causing it and how to help combat it better every day, week and month...For the last three years, we have been studying biomedical interventions and using parent-based online-forum analysis to uncover the reasons for his autism.”

Finding Answers Online

Online forums, whether railing for or against such alternative therapies for autism, have become hives of activity, with parents swapping treatment stories, medical fears, offering support and encouraging parents to take matters into their own hands. “People even get aggressive,” says Renate Lindeman, another T.I.A. supporter, and mom to a 6-year-old autistic daughter. “It is a misunderstanding. A misplaced trust in pharmaceutical companies and [believing] authorities have our best interests at heart.”

Moms like Rudy find it all a bit confining. The public forum and medical industry lashing don’t sit well with her. She took her son Tom out of school after fourth grade so that she could teach him at home, and says, “I’m not a good fighter; but I’m a good teacher.” Together, mother and son engage in a different sort of alternative therapy—going on nature walks, following bird tracks, listening to music. She remarks that he’s a great observer, and that she grew tired of trying to mold the school system to his needs. “People become so invested in whatever course they’ve invested in,” she says of certain autism parents, “that they just can’t afford to consider that it may not be accurate.”

Perhaps most frustrating for all these parents is that they’re required to seek out answers on their own, and then defend them, all while trying to provide treatments for their autistic child that—traditional or alternative—are time-consuming, expensive and may or may not bring results. Says Lindeman: “My husband and I do not have a personal or social life anymore since our child started regressing. All our time, money and efforts are spent on getting our child well before it is too late.”

Even if research begins to shift more decisively into studying environmental triggers for autism—which it is only, slowly, beginning to do—the results of those studies will not come soon enough to make a difference for parents of autistic kids today. So researchers suggest, in lieu of definitive proof, that parents take precautions. During pregnancy, women can take proper prenatal vitamins, so that the fetus is not drawing nutrients from mom’s bones and fat tissue where toxins are stored; they can avoid fish such as shark and swordfish and limit albacore tuna to prevent additional mercury; and they can minimize household chemicals and cleaning products. Once the child is born, researchers affiliated with DAN! say parents can better monitor vaccinations—following a more spread-out schedule, making sure the child is healthy prior to vaccinations and certainly not allowing vaccinations to be administered if the child is on antibiotics. And parents, good research shows, should resist antibiotic treatment for infants unless it is unequivocally necessary. Says Adams: “The research shows that roughly three weeks after getting an ear infection if you have used oral antibiotics, you’ll have about a 95% recovery rate; but if you do absolutely nothing and let the child’s immune system fight it out, you have a 90% recovery rate.” And if the child’s immune system fights off an infection, it’s less likely to return. Adams cautions against the use of Tylenol in infants, too. “Tylenol vastly depletes glutathione,” he says, meaning “kids lose their ability to excrete toxic metals.”

Early preventative steps—and early precautions—may be parents’ only defense against the likelihood of autism. It seems the wait for any definitive answers is going to be long.

BRITA BELLI is editor of E.

7. Most parents found to trust vaccines

By CARLA K. JOHNSON
ASSOCIATED PRESS, STLtoday.com
03/01/2010

CHICAGO — One in four U.S. parents believes some vaccines cause autism in healthy children, but even many of those worried about vaccine risks think their children should be vaccinated.

Most parents continue to follow the advice of their children's doctors, according to a study based on a survey of 1,552 parents. Extensive research has found no connection between autism and vaccines.

"Nine out of 10 parents believe that vaccination is a good way to prevent diseases for their children," said lead author Dr. Gary Freed of the University of Michigan. "Luckily their concerns don't outweigh their decision to get vaccines so their children can be protected from life-threatening illnesses."

In 2008, unvaccinated school-age children contributed to measles outbreaks in California, Illinois, Washington, Arizona and New York, said Dr. Melinda Wharton of the U.S. Centers for Disease Control and Prevention. Thirteen percent of the 140 who got sick were hospitalized.

"It's fortunate that everybody recovered," Wharton said, noting that measles can be deadly. "If we don't vaccinate, these diseases will come back."

Fear of a vaccine-autism connection stems from a flawed and speculative 1998 study that recently was retracted by a British medical journal. The retraction came after a council that regulates Britain's doctors ruled the study's author acted dishonestly and unethically.

The new study is based on a University of Michigan survey of parents a year ago, long before the retraction of the 1998 study. However, much has been written about research that has failed to find a link between vaccines and autism. Mainstream advocacy groups such as Autism Speaks strongly encourage parents to vaccinate their children.

"Now that it's been shown to be an outright fraud, maybe it will convince more parents that this should not be a concern," said Freed, whose study appears in the April issue of Pediatrics, released today.

Some doctors are taking a tough stand, asking vaccine-refusing parents to find other doctors and calling such parents "selfish."

A statement from a group practice near Philadelphia outlines its doctors' adamant support for government-recommended vaccines and their belief that "vaccines do not cause autism or other developmental disabilities."

8. 1 in 4 parents buys unproven vaccine-autism link

By CARLA K. JOHNSON, AP Medical Writer – Mon Mar 1

CHICAGO – One in four U.S. parents believes some vaccines cause autism in healthy children, but even many of those worried about vaccine risks think their children should be vaccinated.

Most parents continue to follow the advice of their children's doctors, according to a study based on a survey of 1,552 parents. Extensive research has found no connection between autism and vaccines.

"Nine out of 10 parents believe that vaccination is a good way to prevent diseases for their children," said lead author Dr. Gary Freed of the University of Michigan. "Luckily their concerns don't outweigh their decision to get vaccines so their children can be protected from life-threatening illnesses."

In 2008, unvaccinated school-age children contributed to measles outbreaks in California, Illinois, Washington, Arizona and New York, said Dr. Melinda Wharton of the U.S. Centers for Disease Control and Prevention. Thirteen percent of the 140 who got sick that year were hospitalized.

"It's fortunate that everybody recovered," Wharton said, noting that measles can be deadly. "If we don't vaccinate, these diseases will come back."

Fear of a vaccine-autism connection stems from a flawed and speculative 1998 study that recently was retracted by a British medical journal. The retraction came after a council that regulates Britain's doctors ruled the study's author acted dishonestly and unethically.

The new study is based on a University of Michigan survey of parents a year ago, long before the retraction of the 1998 study. However, much has been written about research that has failed to find a link between vaccines and autism. Mainstream advocacy groups like Autism Speaks strongly encourage parents to vaccinate their children.

"Now that it's been shown to be an outright fraud, maybe it will convince more parents that this should not be a concern," said Freed, whose study appears in the April issue of Pediatrics, released Monday.

Some doctors are taking a tough stand, asking vaccine-refusing parents to find other doctors and calling such parents "selfish."

A statement from a group practice near Philadelphia outlines its doctors' adamant support for government recommended vaccines and their belief that "vaccines do not cause autism or other developmental disabilities."

"Furthermore, by not vaccinating your child you are taking selfish advantage of thousands of other who do vaccinate their children ... We feel such an attitude to be self-centered and unacceptable," the statement says, urging those who "absolutely refuse" vaccines to find another physician.

"We call it the manifesto," said Dr. Bradley Dyer of All Star Pediatrics in Lionville, Pa.

Dozens of doctors have asked to distribute the statement, Dyer said, and only a handful of parents have taken their children elsewhere.

"Parents have said, 'Thank you for saying that. We feel much better about it,'" Dyer said.

The new study is based on an online survey of parents with children 17 and younger. It used a sample from a randomly selected pool of nationally representative participants. Households were given Internet access if they didn't already have it to make sure families of all incomes were included. Vaccines weren't mentioned in the survey invitation and vaccine questions were among others on unrelated topics.

Twenty-five percent of the parents said they agreed "some vaccines cause autism in healthy children." Among mothers, 29 percent agreed with that statement; among fathers, it was 17 percent.

Nearly 12 percent of the parents said they'd refused a vaccine for their children that a doctor recommended. Of those, 56 percent said they'd refused the relatively new vaccine against human papillomavirus, or HPV, which can cause cervical cancer. Others refused vaccines against meningococcal disease (32 percent), chickenpox (32 percent) and measles-mumps-rubella (18 percent).

Parents who refused the HPV vaccine, recommended for girls since 2006, cited various reasons.

Parents who refused the MMR vaccine, the shot most feared for its spurious autism link, said they'd read or heard about problems with it or felt its risks were too great.

The findings will help doctors craft better ways to talk with parents, said Dr. Gary S. Marshall of the University of Louisville School of Medicine and author of a vaccine handbook for doctors.

"For our children's sake, we have to think like scientists," said Marshall, who was not involved in the new study. "We need to do a better job presenting the data so parents understand how scientists have reached this conclusion that vaccines don't cause autism."

9. Court will hear case about vaccine side effects

Associated Press

WASHINGTON — The Supreme Court will decide whether drug makers can be sued by parents who claim their children suffered serious health problems from vaccines.

The justices on Monday agreed to hear an appeal from parents in Pittsburgh who want to sue Wyeth over the serious side effects their daughter, six months old at the time, allegedly suffered as a result of the company's diphtheria, tetanus and pertussis vaccine.

The 3rd U.S. Circuit Court of Appeals in Philadelphia ruled against Robalee and Russell Bruesewitz, saying a 1986 federal law bars their claims.

That law set up a special vaccine court to handle disputes as part of its aim of insuring a stable vaccine supply by shielding companies from most lawsuits.

Wyeth, now owned by Pfizer, Inc., prevailed at the appeals court but also joined in asking the court to hear the case, saying it presents an important and recurring legal issue that should be resolved.

The Obama administration joined the parties in calling for high court review, although the government takes the side of the manufacturers.

Only one state appeals court, the Georgia Supreme Court, has ruled that families can sue in a vaccine case. The vaccine industry has fiercely opposed the Georgia ruling in the case of Marcelo and Carolyn Ferrari. They claim their son suffered neurological damage after receiving vaccine booster shots made by pharmaceutical companies Wyeth and GlaxoSmithKline that contained the preservative thimerosal.

The family has since withdrawn its lawsuit, possibly in an effort to avoid an unfavorable Supreme Court ruling, although the Georgia court's opinion allowing similar lawsuits remains in force.

The court did not act on the companies' appeal Monday, but the decision in the other case almost certainly will apply to the Georgia case.

According to the lawsuit, Hannah Bruesewitz was a healthy infant until she received the vaccine in April 1992. Within hours of getting the DPT shot, the third in a series of five, the baby suffered a series of debilitating seizures. Now a teenager, Hannah suffers from residual seizure disorder, the suit says.

The vaccine court earlier rejected the family's claims.

Wyeth lost another high court fight last year over whether federal law barred lawsuits against drug makers. That case, involving a botched injection, asked whether federal law included an implicit prohibition on the lawsuits. The court said it did not.

In this appeal, however, Congress clearly laid out how claims over vaccines were to be made, and the court has repeatedly ruled against plaintiffs when Congress has explicitly sought to bar lawsuits.

Other than the Georgia court, state and federal courts have uniformly invoked a provision of the 1986 federal law, which seems to bar most lawsuits against vaccine makers.

The idea behind the National Childhood Vaccine Injury Act was to ensure a stable supply of childhood vaccines by shielding drug makers from most lawsuits, and setting up a federal vaccine court to handle disputes. The law would serve to block state laws that otherwise would give families the ability to sue the manufacturers.

In recent years, the legal fight has frequently come from families of autistic children claiming that mercury-based thimerosal is linked to autism. Numerous studies have addressed vaccines and autism and found no link, including with the preservative.

Thimerosal has been removed in recent years from standard childhood vaccines, except flu vaccines that are not packaged in single doses.

Last year, special masters appointed by the vaccine court concluded that vaccines aren't to blame for autism, disappointing thousands of families hoping to win compensation and others who remain convinced of a connection.

But the vaccine court still must rule on additional cases that argue that vaccines with thimerosal are to blame, if the mercury reached and damaged brain cells.

The case, to be argued in the fall, is Bruesewitz v. Wyeth, 09-152.

10. Autism Research Institute Statement Regarding Lawsuits Filed Against Doctors

AgeofAutism.com

The following is our sponsor ARI’s Statement Regarding Lawsuits Filed Against Drs. Usman and Rossignol (.pdf HERE.)

Recent articles by ABC News and the Chicago Tribune on M.D.s who subscribe to the Defeat Autism Now! approach to treatment indicate the spread of misinformation and misunderstanding in recent months. The complaints about Drs. Usman and Rossignol resulted from a custody case-- a painful situation for any family, one that can lead to accusations that must be sorted out in a court of law—not the media.

The Defeat Autism Now! approach to autism invites the medical community to be more responsive, inquisitive, and knowledgeable about treating these disorders.

The approach is not in itself a source of controversy, since many treatment interventions are commonly prescribed by traditional health professionals.

The great problem is rather that chronic, unaddressed illness plagues many, if not most, of the children and adults on the autism spectrum. These conditions, thoroughly documented in the scientific literature, often involve the gastrointestinal system and/or the immune system, but the medical establishment has been professionally insensible to what is a desperate situation in the expanding autism population.

The focus of the Defeat Autism Now! approach is twofold: to provide patients with allergen-free nutritional support, to uphold and to repair the immune system as needed, and, if appropriate, to reduce the body burden of environmental toxins; to provide clinicians in-depth medical and scientific information, with Continuing Medical Education credits.

We assure the public and the autism community that the Autism Research Institute will track developments closely and will provide information as necessary. We will continue our efforts to provide appropriate support to Drs. Usman and Rossignol, as well as to other physicians.

Editor's note: At TACA we are deeply concerned about the staged attack of these two caring physicians as a result of a very bitter and public divorce. We will be letting members and community know how to show support in the next couple of weeks – stay tuned.

11. Vaccines court' rejects mercury-autism link in 3 test cases

The finding supports a broad scientific consensus that the mercury-containing preservative thimerosal does not cause autism, and will likely disappoint parents who are convinced otherwise.

By Thomas H. Maugh II and Andrew Zajac, LATimes.com
March 13, 2010

Reporting from Washington and Los Angeles
The federal "vaccines court" ruled Friday in three separate cases that the mercury-containing preservative thimerosal does not cause autism, a finding that supports the broad scientific consensus on the matter but that greatly disappointed parents who are convinced that their child's illness was caused by vaccines.

The court had ruled 13 months ago that a combination of the measles-mumps-rubella vaccine, commonly known as the MMR vaccine, and thimerosal does not cause the disorder, so the new ruling may finally close the bulk of litigation on the matter. The earlier ruling has been appealed to the U.S. Court of Appeals, and this one most likely will be also, but most experts think the court will uphold the decision.

A claim that the MMR vaccine alone causes autism has been withdrawn by parents.

More than 5,300 parents had filed claims with the vaccines court, a branch of the U.S. Court of Federal Claims, seeking damages because they believed their children had developed autism as a result of vaccinations. And they reacted bitterly to Friday's ruling.

"Find me another industry where the U.S. government defends their product in court and funds the science that exonerates them," said J.B. Handley, a founder of Generation Rescue in Sherman Oaks and father of a child with autism. "The average citizen has no hope."

The cases that three judges, called special masters, chose to rule on as test cases were considered among the strongest, so the outlook appears grim for others making the same claim. Each ruled on one case.

Special Master Denise K. Vowell wrote in one of the decisions that "petitioners propose effects from mercury in [vaccines] that do not resemble mercury's known effects in the brain, either behaviorally or at the cellular level. To prevail, they must show that the exquisitely small amounts of mercury in [vaccines] that reach the brain can produce devastating effects that far larger amounts experienced prenatally or postnatally from other sources do not."

She also dismissed claims that some groups of children are unusually susceptible to the effects of mercury. "The only evidence that these children are unusually sensitive is the fact of their [autism] itself."

In a separate ruling, Special Master George L. Hastings wrote: "This case . . . is not a close case. The overall weight of the evidence is overwhelmingly contrary to the petitioners' causation theories."

Commenting on the rulings, Dr. Paul Offit of the Children's Hospital of Philadelphia said in a news conference that the idea that vaccines or thimerosal cause autism "had its day in scientific court and was shown not to hold up. . . . The ruling clearly supported the science, fortunately." Offit, inventor of the rotavirus vaccine and author of five books on the vaccine controversy, is a strong proponent of vaccination and has been vilified by many parents.

Parents and advocacy groups argued that the ruling represents a conspiracy to protect vaccination programs. "The courts won't concede something that will bring down the vaccination program," Handley said.

Vaccine court special masters are protecting the vaccine program at the expense of children harmed by inoculations, said Mary Holland of the Coalition for Vaccine Safety, an umbrella organization of autism groups that says it is focused on improving vaccine safety science.

"I'm sure they sincerely believe they're protecting the public health because they think that if people believed vaccines caused diseases, they would stop vaccinating children," Holland said. "They bend over backwards to not acknowledge vaccine injury."

Largely because of parental fears, thimerosal was removed from all childhood vaccines by 2001, except for multidose vials of influenza vaccine. Despite that action, the prevalence of autism has continued to grow, and it is now thought to affect as many as one in every 100 children, according to the Centers for Disease Control and Prevention.

The vaccine court was established in 1986 because vaccine manufacturers were facing many liability suits that threatened their ability to continue manufacturing the medicines. The court holds no-fault hearings to determine whether a child has been harmed by a vaccine. Compensation comes from a $2.5-billion fund based on a 75-cent surcharge on each dose of vaccine.

The court has made many awards to parents who successfully showed that their children were damaged neurologically or otherwise by vaccinations -- a rare, but nonetheless real event -- but has refused to accept claims that autism is caused by vaccination.

The Supreme Court on Monday agreed to hear an appeal from Pittsburgh parents who want to sue vaccine manufacturer Wyeth directly because their daughter suffered a series of debilitating seizures after being vaccinated. They argue that they cannot get a fair hearing in the vaccine court.

thomas.maugh@latimes.com

azajac@latimes.com

Trine Tsouderos in Chicago contributed to this report.

12. Police investigate Danish autism researcher for fraud

Copenhagen Post

WEDNESDAY, 17 MARCH 2010 12:19 RC NEWS

Critics of MMR vaccines say Danish researcher’s alleged fraud casts doubt on studies refuting connection between shots and autism

A Danish autism researcher is being investigated by police for defrauding an estimated 10 million kroner from Aarhus University while he was employed there.

Dr. Poul Thorsen, one of the researchers involved in two well-known autism reports that appeared in the influential New England Journal of Medicine, was accused of fraud last month by the university and East Jutland Police have now got involved in the case.

Thorsen resigned on Tuesday from his position in the US as adjunct professor at Drexel University in Philadephia, Pennsylvania in the wake of the investigation.

Thorsen’s fraud charges stem from the time of the reports, when he was employed at Aarhus University. Police are currently investigating the disappearance of around 10 million kroner from grants given to it by the US Centers for Disease Control and Prevention, used to help fund the autism project.

According to Aarhus University, Thorsen was in charge of appropriating the funds from the CDC. In addition to the fraud charges, Thorsen was allegedly working for Emory University in the US since 2003 in violation of his contract at Aarhus University.

The timing of the investigation and Thorsen’s resignation from Drexel coincide with a US Court of Federal Claims last Friday, which ruled against parents asserting that the MMR vaccines were responsible for their children’s health problems.

Two Danish studies from 2002 and 2003 are at the heart of that issue because they are widely referred to by groups refuting the vaccine connection and are considered to be among the most comprehensive studies ever done on the subject. A spokesman for the US Surgeon General’s Office called the reports’ conclusions that no connection exists ‘irrefutable’.

The issue has been one of heated controversy in the US between two opposing sides – the more powerful one that supports the research and the one that believes many more studies need to be done in the area.

The first report was based on studies of over 500,000 children born in Denmark from 1991 through 1998. The study indicated conclusively that there was no connection between measles, mumps and rubella (MMR) vaccines and autism.

The other report used a much smaller group in its study but came to the same conclusion.

US Senator Robert Kennedy Jr. has been the most high-profile person to question the acceptance of the studies’ results, ruffling feathers within the pharmaceutical industry, the medical profession and with other politicians. Kennedy came out this week to say that if Thorsen is found guilty of fraud then it would cast serious doubt on the validity of both studies.

Numerous internet-based autism groups have also indicated that Thorsen’s research should be considered compromised if he is convicted.

Two other scientists behind the Danish reports, Mads Melbye of Statens Serum Institut and Kreesten Meldgaard Madsen of Aarhus University Hospital, told the Philadelphia Enquirer newspaper that Thorsen was only one researcher in the groups behind the studies and had little or no influence on the ultimate conclusions.

Denmark ceased to use mercury-based substances in its vaccines in 1992. However, autism cases continue to rise here as well, although the percentage continues to be far under that of children in the US.

Many experts also say that the increase can be partly explained by the fact that more doctors are now recognising the disorder.

13. Personal Note from Lisa Ackerman

Each month I want to update you about TACA efforts, our members and how families affected by autism are doing. This month, I started to pen an update but stopped in my tracks. This article by a TACA family encapsulates is so well that I didn’t think I should continue with my thoughts in this month’s enewsletter to TACA families and friends.

If you don’t know this already – I love my job & TACA families. I adore the parents and the children affected by autism and understand deeply what they are going through. But you need to know this: I have a huge soft spot for typical siblings who are in the trenches helping all along the way of the autism journey. I marvel at their strength and heart for the brother or sister that they love. My daughter Lauren has taught me so much as a witness and advocate for her brother Jeff. I cannot believe how many siblings put their needs and wants to aside for a sibling affected by autism. These kids are my every day heroes.

I am so proud of Amber Betzold and wanted to share with you her recent school essay on autism and her brother Beau. Her parents must be beaming with pride for her ability to articulate such an amazingly tough situation with a wonderful since of humor and purpose.  I am so proud of all our typical kids and what they face along with their parents everyday.

Belly Laughs by Amber Betzold
(written by a 16 year old sibling to Beau who is affected by autism)

I believe in the power of humor. I believe in its uncanny ability to keep one going in those situations that really test our limits. I believe in the power you can gain over something, simply by laughing at it. Laughter has the power to change our attitude about a situation, which in turn gives us power to take action.

My father once said I was forged in crucible, and in a way, that's true. Growing up with a severely disabled sibling isn't exactly a picnic in the park. For my family and I, the word "autism" conjures up so much more than the image of Rain Man. Autism means chaos, stress, and even, on occasion, depression. Autism means having to worry about your financial future much earlier than most kids. Autism means having to board up the broken windows with cardboard and duct tape. Autism means watching your parents lose their son behind the mask of his illness. My brother's autism isn't just a social quirk. It's a very real illness. He cannot speak, virtually cannot go out in public, cannot tolerate clothing, and is constantly in gastro-intestinal pain.

I will forever contest that two things have kept my family sane over the past twelve years since Beau's diagnosis. The first is hope, and the second is humor. For example, the summer before my freshman year, we went on a road trip to Austin, Texas from where we live in Illinois. My brother was to see a pediatric gastroenterologist, specializing in children with autism. In the car, on the way, my parents and I wrote a parody of Bon Jovi's "It's My Life." The lyrics went, "It's my bowel, it's now or never. I ain't pooped in forever."

I am grateful to both of my parents for passing their ability to laugh through the most difficult of times on to me. I have carried that skill with me to my school, where I faced a challenging academic environment and grew an incredible amount emotionally. I am always the first among my friends to point out the humor in a bad situation. Being able to laugh, when you want to cry is one of the most valuable skills one can possess.

No matter the horrible reality of the situation, there is always some way to construe it as comical in your head. This is exemplified perfectly in a childhood favorite of mine, The Harry Potter series. A boggart is a shape-shifting creature that changes itself into, quite literally, your worst nightmare. The only way to vanquish a boggart is to think of some way to make a joke of it, and say Ridikulous. Just as boggarts can be banished through laughter, so too can the weight of our problems be lessened.

In the end, it's always best not to take oneself, or even life, too seriously. Laughter is a rejuvenating and calorie-burning activity that never fails to lighten one's heart. Never underestimate the power of a good belly laugh.

So in the wise words of Amber, have you laughed today? Find the humor where it is cleverly hidden every day.  Know that you are not alone in this journey and hope for all our children is alive and well. And today, please hug your typical child that is with you on this journey. Thank them for their love and support. I want to thank them too.

All my best,

Lisa Ackerman – TACA Executive Director

Proud mom to Jeff & Lauren, wife to Glen