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We recently we received this email from Autism Speaks, an organization that is doing great job these days with Autism Awareness. The email speaks of the promise of Autism Treatments being covered by insurance. I say-Why stop at New York State? Why not make it nationwide or worldwide? Governor Plain, Senator McCain since it was part of your platform, why does the support you promised have to end with the election? President Obama and VP Biden, a good idea is a good idea. We can all do more to be supportive of Autism sufferers as we should for anyone suffering with a disease or sickness.
But seriously, can anyone imagine the cost of cancer care, surgery and treatments, not being covered by insurance? Hundreds of thousands of dollars a month or more that I am aware of and I am 1000000% thrilled that it is mostly 100% covered by insurance. That is how it should be in the medical system we have today.
Given the high degree of clinical research data showing how treatments can help benefit Autism sufferers, essentially at every age and stage of life but especially before the age of 3, 7 and 12 years of age. The time has come to get serious about Autism and insurance companies need to step up and begin covering for the treatment of Autism, and government needs to somehow impose on either the insurance comanies or themselves a retro-active refund of coverage or tax credit for prior years spending because $20, $30, $50,000 a year or more on treatment don’t last too long even while making a very healthy six figure income . We insure our health, not against specific diseases- at least that’s what I’ve always thought I was buying into with insurance -does anyone know how that works? Send me a comment.. Does this mean a child with Autism will never be able to be covered by insurance because of a pre-existing condition that has a real chance of being reversed with proper treatment coverage in the first place? Ok you getthe point..
Perhaps the folks I mention above need to watch the movie Sicko by Michael Moore, because it seems to me a lot of people are getting it right when it comes to medical care and it isn’t in the United States of America- which few love more than I.
Here is the email. Get Involved and Take Care.
Imagine a time when autism treatment is covered by insurance. That dream can be a reality for New York state.
Thank you! For 10 years, the autism community has been coming together for Autism Speaks. This year alone over 50,000 strong will unite in Walk Now for Autism Speaks in Long Island, New York City, Rochester, Central New York, Capital Region, Sullivan County, Greater Hudson Valley and Westchester County – raising money and awareness for Autism Speaks, the world’s largest autism advocacy organization in the world. Your time, talent, resources and donations help move ground-breaking research forward and to advance the autism cause. Dollars raised through our Walk Now for Autism Speaks program are the fuel for all of our efforts!
New York State’s time is NOW for insurance legislation. New York has the ability to pass insurance reform this session.
Over the next few weeks we will be in a critical time for this legislation and we will be asking for all of New York state to take action – calling and emailing their senators and assembly members.
“OPT IN” for news about this legislations and action alerts about how you can help. Sign up for Autism Votes today at www.autismvotes.org. If you don’t register you will not receive the action alerts.
Be part of history! Have your voice heard in Albany. Help make it possible for families to get coverage for autism.
The time for this legislation is now – and you can make it happen. You have already taken the first step of being part of our grassroots efforts in New York state by participating or supporting our Walk program. Take the next step and help the almost 130,000 families in New York state who live with autism every day get the coverage they deserve.
UPDATE – It was great to see Sarah Palin marching alongside others at the Autism Walk in Westchester, NY this weekend. Keep it up Sarah, our children need high level partners and supporters in government.
Taking care of our selves is just as important as taking care of our loved ones.
This company also has a full line of Digestive Enzyme products which may have good results on leaky gut.
Stress in Our Diets
Currently, the Average American eats 133 POUNDS OF SUGAR each year; 75 years ago, the Average American ate only 7 pounds of sugar a year! Sugar is toxic to the body, accelerates aging, depletes the body of B vitamins and minerals, and can lead to heart disease, cancer, hypoglycemia, and diabetes. An incredible 80% OF CARBOHYDRATES consumed by Americans are in the form of refined flours and sugars.
Only 9% of the population eats the recommended five servings of vitamin-rich fruits and vegetables.
Americans eat 230 MORE CALORIES PER DAY than they did just 15 years ago. Our diet consists of refined foods. Increasing our consumption of nutrient-depleted foods means we have an even higher requirement for the vitamins and minerals needed to metabolize them.
Many people eat non-foods like MSG, saccharine, NutraSweet, Splenda, artificial colorants and flavors that put stress on our systems.
Almost all foods have pesticides, chemical dioxins, and fluorides that come into our bodies each day. Most fast-food hamburgers have been shown to contain traces of OVER 100 PESTICIDES.
Most meats have antibiotic, hormone, and chemical residues that have toxic effects on our bodies.
Our foods are contaminated with phthalates from plastic wraps, styrofoam, tupperware, and non stick coatings from frying pans, that enter and damage our system.
Even the common practice of microwaving in plastic containers contaminates our food with toxins.
Vitamin B2 is one of the nutrients used by the body to support optimal thyroid function. An astonishing 5 million US adults suffer from Hypothyroidism (an under-active thyroid that slows the metabolism); most people go undiagnosed and do not even know they have it.
More than 10% OF CALORIES consumed in America come from ALCOHOLIC BEVERAGES. Alcohol in large quantities is detrimental to the liver, and it depletes B vitamins, zinc, and magnesium.
Prescription and over-the-counter medications can deplete nutrients and create deficiencies.
Birth control pills create B6 deficiencies and increase the need for B6 beyond what the diet can supply.
Those who exercise regularly have a much higher need for antioxidants and minerals.
Currently, millions of Americans are dieting and need supplements just to meet minimal nutrient requirements. Dieting increases free radical production, so more antioxidants are needed to support the health of the liver and other organs whose normal function can sometimes be compromised during weight loss.
Stress in Our Environment
An optimal selection of healthy whole foods does not give us enough antioxidants to defend ourselves against toxic chemicals and gases we absorb from office equipment, cigarette smoke, smog, and alcohol.
The average person is exposed to more than 500 CHEMICALS in the home environment and 700 CHEMICALS in drinking water that are known to deplete many nutrients.
Research has verified that routine application of organophosphate fertilizers over the past 50 years has decreased the calcium content of conventionally grown broccoli to ONE-SIXTH (17%) what it was in the 1950’s.
Even if we are drinking purified water, most of us shower in water that is full of chemicals, or sit in chemical filled jacuzzis or swimming pools, which enter our system every day.
Our clothes, mattresses, and sheets are full of chemicals, flame retardants, preservatives, and anti-fungals which enter our bodies through the skin.
Our air is full of carbon monoxide, petrochemicals, lead, mercury, plastic fumes, etc. which enter our bodies when we breathe.
The excess of cultural and environmental stressors we face daily produce free radicals. Free radicals are highly reactive molecules that trigger oxidative damage by accelerating aging and quickening disease. In order to neutralize free radical damage caused by different stressors, our livers are burdened with the task of detoxification, a process which requires additional nutrients above the RDA recommended daily amounts.
During the 3rd Presidential Debate, held at Hofstra University recently, both candidates spoke about autism. In response to a question from CBS News’ Bob Schieffer, “why would the country be better off if your running mate became president” the senators made the following remarks:
Sen. McCain: …She (Sarah Palin) also understands special needs families. She understands that autism is on the rise. We’ve got to find out what’s causing it and we’ve got to reach out to these families and help them and give them the help they need as they raise these very special needs children. She understands that better than almost any American that I know. I’m proud of her.
Sen. Obama: …I think it’s very commendable the work she (Sarah Palin) has done on behalf of special needs. I agree with that John. I do just want to point out that autism for example or other special needs will require some additional funding if we’re going to get serious in terms of research. That is something that every family that advocates on behalf of disabled children talks about. And if we have an across the board spending freeze we’re not going to be able to do it.
In response to the Bob Schieffer’s question “Do you think the federal government should play a larger role in the schools and I mean federal money?” the senators made the following remarks:
Sen. Obama: I do think it is important for the federal government to step up and help local school districts do the things they need to do….We did the right thing by saying every school should provide education for children with special needs but we never followed through on the promise of funding, and that left local school districts very cash strapped.
Sen. McCain: In town hall meeting after town hall meeting, parents come with kids, children, precious children who have autism. Sarah Palin knows about that better than most. And we’ll find, and we’ll spend the money on research to find the cause of autism, and we’ll care for these young children and all Americans will open their wallets and their hearts to do so.
We finally may have some real representation in the government with either candidate. Palin knows the pain personally, Obama seems to understand the need for federal funding of local schools. Should be interesting how this plays out, lets keep the Special Needs topic front and center.
From Age of Autism – What will happen to the Monkees ?
The first research project to examine effects of the total vaccine load received by children in the 1990s has found autism-like signs and symptoms in infant monkeys vaccinated the same way. The study’s principal investigator, Laura Hewitson from the University of Pittsburgh, reports developmental delays, behavior problems and brain changes in macaque monkeys that mimic “certain neurological abnormalities of autism.”
The findings are being reported Friday and Saturday at a major international autism conference in London.
Although couched in scientific language, Hewitson’s findings are explosive. They suggest, for the first time, that our closest animal cousins develop characteristics of autism when subjected to the same immunizations – such as the MMR shot — and vaccine formulations – such as the mercury preservative thimerosal — that American children received when autism diagnoses exploded in the 1990s.
The first publicly reported results of this research project come in both oral and poster presentations on Friday and Saturday at the International Meeting For Autism Research in London. Poster presentations must go through a form of peer review before they are presented at the conference; the papers have not yet appeared in a scientific journal.
In addition to Hewitson’s oral presentation today, on Saturday in one of two related poster presentations, the researchers also are reporting in their abstract that “vaccinated animals exhibited progressively severe chronic active inflammation [in gastrointestinal tissue] whereas unexposed animals did not. We have found many significant differences in the GI tissue gene expression profiles between vaccinated and unvaccinated animals.” Numerous scientific studies, as well as many parents, report severe GI ailments in children with regressive autism.
The results are sure to be controversial, in part because they lend credence to studies first published in 1998 by British pediatric gastroenterologist Andrew Wakefield, one of Hewitson’s co-authors on these findings. He described an unusual inflammatory bowel condition in children who had regressed into autism after they received the measles-mumps-rubella (MMR) vaccination. Wakefield is currently fighting charges of medical misconduct in Britain over allegations of conflict-of-interest and improper procedures related to that paper. He denies the charges.
In the program for the conference, the 7th Annual International Meeting for Autism Research (IMFAR), there are three separate presentations listed that report results from the overall research program. The first, an oral presentation entitled “Pediatric Vaccines Influence Primate Behavior, and Amygdala Growth and Opioid Ligand Binding” (the “amygdala abstract”) was led by Dr. Hewitson and lists 12 co-authors, including five of her colleagues from the University of Pittsburgh and Dr. Wakefield. Other authors are chemists, pathologists and psychologists from the universities of Kentucky, California-Irvine, and Washington.
Hewitson’s introductory presentation will be followed by two poster presentations on Saturday; one of the two, “Pediatric Vaccines Influence Primate Behavior, and Brain Stem Volume and Opioid Ligand Binding”, was led by Wakefield and includes six additional co-authors.
It focuses on the developmental effect of vaccine exposures on brain growth during infancy. The second, “Microarray Analysis of GI Tissue in a Macaque Model of the Effects of Infant Vaccination,” was led by Steven Walker of Wake Forest University and performed gene array analysis on the intestinal tissues of the vaccinated and unvaccinated monkeys.
The studies address – albeit in animals, not children — one of the major criticisms by parents and scientists concerned about a possible link between the greatly stepped-up immunization schedule in the 1990s, including higher exposure to the mercury preservative, and autism. While the Food and Drug Administration approves individual vaccines as safe and effective, and an advisory committee to the Centers for Disease Control and Prevention recommends the childhood immunization schedule adopted by the states, the overall health outcomes from the total vaccine load, versus no vaccinations at all, have never been compared, the authors said.
A bill requiring the government to conduct a study of autism rates in unvaccinated American children is pending in the U.S. House of Representatives, co-sponsored by Reps. Carolyn Maloney (D-N.Y.) and Tom Osborne (R.-Neb.). Just this week, former National Institutes of Health Director Bernadine Healy called for more research into a possible vaccine link to autism and said the question had not been settled, despite repeated assertions to that effect by the CDC, the Institute of Medicine and the American Academy of Pediatrics.
In the abstract for today’s oral presentation, the authors noted that macaques, the type of monkey used in the study, “are commonly used in pre-clinical vaccine safety testing, but the combined childhood vaccine regimen, rather than individual vaccines, has not been studied. Childhood vaccines are a possible causal factor in autism, and abnormal behaviors and anomalous amygdala growth are potentially inter-related features of this condition.”
The study found evidence of both behavioral and biological changes after the 13 macaque monkey infants were administered proportional doses, adjusted for age, of the vaccines recommended between 1994 and 1999. Three monkeys were not given any vaccines.
“Primate development, cognition and social behavior were assessed for both vaccinated and unvaccinated infants using standardized tests developed at the Washington National Primate Research Center.” MRI and PET scans looked for brain changes after administration of the MMR.
“Compared with unexposed animals, significant neurodevelopmental deficits were evident for exposed animals in survival reflexes, tests of color discrimination and reversal, and learning sets,” the authors reported. “Differences in behaviors were observed between exposed and unexposed animals and within the exposed group before and after MMR vaccination. Compared with unexposed animals, exposed animals showed attenuation of amygdala growth and differences in the amygdala binding of [11C]diprenorphine. Interaction models identified significant associations between specific aberrant social and non-social behaviors, isotope binding, and vaccine exposure.”
One of the Saturday abstracts makes the further point that the research “revealed significant differences between exposed and unexposed animals” in the kinds of developmental behaviors a mother might be able to observe, “with delayed acquisition of root, suck, clasp hand, and clasp foot reflexes.” They conclude by noting that “This animal model examines the neurological consequences of the childhood vaccine regimen, Functional and … brainstem anomalies were evident in vaccinated animals that may be relevant to some aspects of autism. The findings raise important safety issues while providing a potential animal model for examining aspects of causation and disease pathogenesis in acquired neurodevelopmental disorders.”
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Dan Olmsted is Editor of Age of Autism.
Results of an early study suggest that dairy-free diets and unconventional food preferences could put boys with autism and autism spectrum disorder (ASD) at higher than normal risk for thinner, less dense bones when compared to a group of boys the same age who do not have autism.
The study, by researchers from the National Institutes of Health and Cincinnati Children’s Hospital Medical Center, was published online in the Journal of Autism and Developmental Disorders.
The researchers believe that boys with autism and ASD are at risk for poor bone development for a number of reasons. These factors are lack of exercise, a reluctance to eat a varied diet, lack of vitamin D, digestive problems, and diets that exclude casein, a protein found in milk and milk products. Dairy products provide a significant source of calcium and vitamin D. Casein-free diets are a controversial treatment thought by some to lessen the symptoms of autism.
Funding for the study was provided by the NIH’s National Institute of Child Health and Human Development and National Center for Research Resources. The research team that conducted the study was led by Mary L. Hediger, Ph.D., a biological anthropologist in NICHD’s Division of Epidemiology, Statistics and Prevention Research.
“Our results suggest that children with autism and autism spectrum disorder may be at risk for calcium and vitamin D deficiencies,” Dr. Hediger said. “Parents of these children may wish to include a dietitian in their children’s health care team, to ensure that they receive a balanced diet.”
Dr. Hediger stressed that the current study results need to be confirmed by larger studies. Until definitive information is available, however, it would be prudent for parents of children with autism and ASD to include a dietitian in their care, particularly if the children’s diets do not include dairy products or they are not otherwise eating a balanced diet, she said.
Because girls are much less likely to have autism or ASD than are boys, the researchers were unable to enroll a sufficient number of girls within the short time frame of the study to allow them to draw firm conclusions. Dr. Hediger added that if a girl with autism or ASD is not eating diary products or eating a balanced diet, it would be prudent for a dietitian to be included in her health care team.
Autism is a complex brain disorder involving communication and social difficulties as well as repetitive behavior or narrow interests. Autism is often grouped with similar disorders, which are often referred to collectively as autism spectrum disorders. The underlying causes of autism and ASD are unclear. There is no cure for the disorders and treatments are limited.
When the boys were enrolled in the study, the researchers asked the boys’ parents if the boys were taking over-the-counter or prescription medications, were taking any vitamin or mineral supplements, or were on a restricted diet.
During the study, researchers X-rayed the hands of 75 boys between the ages of 4 and 8 years old who had been diagnosed with autism or ASD. The researchers then measured the thickness of the bone located between the knuckle of the index finger and the wrist and compared its development to a standardized reference based on a group of boys without autism.
Dr. Hediger said that the research team measured cortical bone thickness. She added that this procedure was done as a substitute for a conventional bone scan, which measures bone density. Bone density is an indication of bones’ mineral content. Less dense bones may indicate a risk of bone fracture.
The researchers used the measure of bone thickness because many of the boys were unable to remain still long enough for the conventional scan, which requires individuals to lie immobile for an extended period of time. To successfully complete the bone scan, many of the boys would have required sedation — a step the researchers were reluctant to take for an early study.
The hand X-ray, Dr. Hediger explained, offers an approximate indication of bone density. She added, however, that because the researchers were unable to use a conventional bone scan, the results of the current study should be confirmed by additional studies using conventional bone scans.
The investigators found that the bones of the boys with autism were growing longer but were not thickening at a normal rate. During normal bone development, material from inside the bone is transferred to the outside of the bone, increasing thickness, while at the same time, the bones are also growing longer.
At 5 or 6 years of age, the bones of the autistic boys were significantly thinner than the bones of boys without autism and the difference in bone thickness became even greater at ages 7 and 8.
The bone thinning was particularly notable because the boys with autism and ASD were heavier than average and would therefore be expected to have thicker bones.
The researchers do not know for certain why the boys had thinner than normal bones. A possible explanation is lack of calcium and vitamin D in their diets. Dr. Hediger explained that a deficiency of these important nutrients in the boys’ diets could result from a variety of causes. Many children with autism, she said, have aversions to certain foods. Some will insist on eating the same foods nearly every day, to the exclusion of other foods. So while they may consume enough calories to meet their needs — or even more calories than they need — they may lack certain nutrients, like calcium and vitamin D.
Other children with autism may have digestive problems which interfere with the absorption of nutrients. Moreover, many children with autism remain indoors because they require supervision during outdoor activity. Lack of exercise hinders proper bone development, she said. Similarly, if children remain indoors and are not exposed to sunlight, they may not make enough vitamin D, which is needed to process calcium into bones.
The boys in the study who were on a casein-free diet had the thinnest bones. In fact, the 9 boys who were on a casein-free diet had bones that were 20 percent thinner than normal for children their age. Boys who were not on a casein-free diet showed a 10 percent decrease in bone thickness when compared to boys with normal bone development.
The study authors wrote that bone development of children on casein-free diets should be monitored very carefully. They noted that studies of casein-free diets had not proven the diets to be effective in treating the symptoms of autism or ASD.
Only 9 boys on casein-free diets were available to participate in the study, Dr. Hediger said. When conducting a scientific study, it’s easier to obtain statistically valid results by studying a larger number of individuals than with a smaller number of individuals. However, the dramatic difference in the boys’ bone thickness when they were either on a casein-free diet or an unrestricted diet and when compared to normally developing bones strongly suggest that the bone thinning the researchers observed was statistically valid.
The researchers recommended that larger studies be conducted to confirm their results.
Until those studies can be conducted, Dr. Hediger offered the following advice: “Our study shows that it couldn’t hurt — and would probably help — if parents of children with autism or autism spectrum disorder consulted with a dietitian during their children’s routine medical care to make sure that their diets are balanced.”
General information about autism and ASD is available from the NICHD’s Web site, at http://www.nichd.nih.gov/publications/pubs/autism/overview/index.cfm.
The NICHD sponsors research on development, before and after birth; maternal, child, and family health; reproductive biology and population issues; and medical rehabilitation. For more information, visit the Institute’s Web site at http://www.nichd.nih.gov/.
The National Institutes of Health (NIH) — The Nation’s Medical Research Agency — includes 27 Institutes and Centers and is a component of the U.S. Department of Health and Human Services. It is the primary federal agency for conducting and supporting basic, clinical and translational medical research, and it investigates the causes, treatments, and cures for both common and rare diseases. For more information about NIH and its programs, visit www.nih.gov.
By LIDIA WASOWICZ
UPI Senior Science Writer
SAN FRANCISCO, May 18 (UPI) — There is at least one dilemma that confronts virtually every family with an autistic child, at one point or another: the problem of access to needed services.By federal law, public schools must provide appropriate education for youngsters with autism, beginning at age 3, although programs vary by state and some families opt for private treatment, especially when the child is very young.
However, early intensive therapy is so expensive — averaging $33,000 annually, by some estimates — many districts refuse to foot the bill.
In addition, because of a lack of scientific support for certain interventions, parents often find themselves fighting health insurers to grant coverage or suing school systems to provide home-based instruction.
Some moms and dads take up the therapist’s role themselves or train college students — who come at a fraction of the cost of specialists — for the job.
“There’s very vigorous debate about which methods are optimal in a given situation for a given child, but there is virtually no debate any more about the need for intensive intervention, which means expensive intervention,” said Michael O’Hanlon, a senior fellow at The Brookings Institution, one of the oldest research centers in Washington.
“These treatments are simply unaffordable at the intensity that’s necessary to make them work.” added O’Hanlon, noting the out-of-pocket tab for his child’s therapies tallies up to some $75,000 a year.
Dr. Eileen Costello, a pediatrician on the staff of Boston University School of Medicine, said she finds third-party payers so unyieldingly reluctant to cover the bill, she sometimes has to stretch the rules to circumvent them.
“I call my friends that are developmental and behavioral pediatricians and say … ‘I want this kid to get this service. What code do you think I should use?’ And … it’s sort of sneaky, and you feel like you’re breaking the law, and we probably are,” she told an autism conference.
“But … when you’re in an office with a child, and you know he needs a certain service, you’re going to do whatever you can within reason to get that service for that child. But it shouldn’t have to be that way.”
Severe restrictions on service availability are nullifying the hard-earned gains made in physicians’ ability to diagnose the neurodevelopmental disorder early, said Barbara Firestone, president and chief executive officer of the non-profit autism service center The Help Group, based in Sherman Oaks, Calif.
“(A)ccess to intensive early intervention is still very limited in our country,” she said. “Identification without intervention is an incomplete and seriously flawed policy, very deficient.”
There are glimmers of hope, including some promising federal efforts such as the Combating Autism Act of 2006, signed by President Bush last year, which authorizes close to $1 billion over five years for autism research, screening and early detection and treatment.
The Children’s Health Act of 2000 mandated the establishment of an Interagency Autism Coordinating Committee to organize autism-related research, programs and initiatives.
An expert panel convened under the plan to focus solely on services came up with a laundry list of 50 challenges to developing and delivering care to children with autism.
“(The) five that I think are particularly important: That we don’t have professionals who are trained to deliver these interventions; that we have no consistent funding mechanism for treatment; that it varies tremendously by locality; (that there is) no established standard of care; that … we have multiple agencies that are responsible for the care of children with autism, and those agencies don’t coordinate that care very well (leading) to extraordinary variation in how care is organized, financed and delivered,” said panel member David Mandell, assistant professor of psychiatry at the University of Pennsylvania School of Medicine in Philadelphia.
“(I)t’s a new paradigm for thinking about children with these disorders and how we care for them,” he told an autism conference. “Until things change at the federal level, it’s not going to filter down to states and localities and practices so that these treatments can be delivered in a meaningful way.”
518) 455-5784; Address: Legislative Office Building, Room 643, Albany, New York 12248.
