IN THE NEWS
Pediatricians Urge Autism Screening
By LINDSEY TANNER, AP
Mon Oct 29, 10:34 AM EDT
The country's leading pediatricians group is making its strongest push yet to have all children screened for autism twice by age 2, warning of symptoms such as babies who don't babble at 9 months and 1-year-olds who don't point to toys.
The advice is meant to help both parents and doctors spot autism sooner. There is no cure for the disorder, but experts say that early therapy can lessen its severity.
Symptoms to watch for and the call for early screening come in two new reports. They are being released by the American Academy of Pediatrics on Monday at its annual meeting in San Francisco and will appear in the November issue of the journal Pediatrics and on the group's Web site _ http://www.aap.org/.
The reports list numerous warning signs, such as a 4-month-old not smiling at the sound of Mom or Dad's voice, or the loss of language or social skills at any age.
Experts say one in 150 U.S. children have the troubling developmental disorder.
"Parents come into your office now saying 'I'm worried about autism.' Ten years ago, they didn't know what it was," said Dr. Chris Johnson of the University of Texas Health Science Center in San Antonio. She co-authored the reports.
The academy's renewed effort reflects growing awareness since its first autism guidelines in 2001. A 2006 policy statement urged autism screening for all children at their regular doctor visits at age 18 months and 24 months.
The authors caution that not all children who display a few of these symptoms are autistic and they said parents shouldn't overreact to quirky behavior.
Just because a child likes to line up toy cars or has temper tantrums "doesn't mean you need to have concern, if they're also interacting socially and also pretending with toys and communicating well," said co-author Dr. Scott Myers, a neurodevelopmental pediatrician in Danville, Pa.
"With awareness comes concern when there doesn't always need to be," he said. "These resources will help educate the reader as to which things you really need to be concerned about."
Another educational tool, a Web site that debuted in mid-October, offers dozens of video clips of autistic kids contrasted with unaffected children's behavior. That Web site _ http://www.autismspeaks.org/ _ is sponsored by two nonprofit advocacy groups: Autism Speaks and First Signs. They hope the site will promote early diagnosis and treatment to help children with autism lead more normal lives.
The two new reports say children with suspected autism should start treatment even before a formal diagnosis. They also warn parents about the special diets and alternative treatments endorsed by celebrities, saying there's no proof those work.
Recommended treatment should include at least 25 hours a week of intensive behavior-based therapy, including educational activities and speech therapy, according to the reports. They list several specific approaches that have been shown to help.
For very young children, therapy typically involves fun activities, such as bouncing balls back and forth or sharing toys to develop social skills; there is repeated praise for eye contact and other behavior autistic children often avoid.
Mary Grace Mauney, an 18-year-old high school senior from Lilburn, Ga., has a mild form of autism that wasn't diagnosed until she was 9.
As a young girl, she didn't smile, spoke in a very formal manner and began to repeat the last word or syllable of her sentences. She was prone to intense tantrums, but only outside school. There, she excelled and was in gifted classes.
"I took her to a therapist and they said she was just very sensitive and very intense and very creative," said her mother, Maureen, 54.
Pediatricians should send such children for "early intervention as soon as you even think there's a problem," Johnson said.
Dr. Ruby Roy, a pediatrician with Loyola University Medical Center, who treats at least 20 autistic children, applauded the reports.
"This is a disorder that is often missed, especially when it's mild, and the mild kids are the ones ... who can be helped the most," Roy said.
Dr. Dirk Steinert, who treats children and adults at Columbia St. Mary's clinic in suburban Milwaukee, said the push for early autism screening is important _ but that it's tough to squeeze it into a child's regular wellness checkup.
Some pediatricians have tried scheduling a visit just to check for developmental problems, when children are 2 1/2. The problem is that insurance doesn't always cover these extra visits, Steinert said.
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AP Medical Writer Mike Stobbe in Atlanta contributed to this report.
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On the Net:
American Academy of Pediatrics: |
Gluten and Casein Free Diet
What on earth are gluten and casein? Can removing them from my child's diet really improve the symptoms of autism and Pervasive Developmental Disorder (PDD)?
Gluten and casein are getting a lot of attention in the autism community and from doctors in the "Defeat Autism Now!" biomedical movement. Some parents, doctors and researchers say that children have shown mild to dramatic improvements in speech and/or behavior after these substances were removed from their diet. Some also report that their children have experienced fewer bouts of diarrhea and loose stools since starting a gluten-free, casein-free (GFCF) diet. Author and autism consultant Donna Williams, who has autism herself, says she has been helped by "nutritional supplements together with a dairy/gluten-free and low Salicylate diet." Some people report no benefits from the GFCF diet.
Gluten and gluten-like proteins are found in wheat and other grains, including oats, rye, barley, bulgar, durum, kamut and spelt, and foods made from those grains. They are also found in food starches, semolina, couscous, malt, some vinegars, soy sauce, flavorings, artificial colors and hydrolyzed vegetable proteins.
Casein is a protein found in milk and products containing milk, such as cheese, butter, yogurt, ice cream, whey and even some brands of margarine. It also may be added to non-milk products such as soy cheese and hot dogs in the form of caseinate.
The theory is that some people with autism and PDD cannot properly digest gluten and casein, which form substances that act like opiates in their bodies. This "drug" substance alters the person's behavior, perceptions, and responses to his environment, according to this theory. Research in the U.S. and Europe has found substances with opiate activity in the urine of a significant number of children with autism. A doctor can order a urinary peptide test that can tell if proteins are not being digested properly.
There is growing interest in the link between autism and gastrointestinal (GI) ailments. A study by the University of California Davis Health System found that children with autism born in the 1990s were more likely to have gastrointestinal problems, including constipation, diarrhea and vomiting, than autistic children who were born in the early 1980s. Some people use the GFCF diet mostly to treat gastrointestinal problems.
Studies are currently underway to examine the effectiveness of the GFCF diet, which has not gained widespread acceptance in the U.S. medical community. One recent study found behavioral improvements in children on a GFCF diet, while another study found no significant effects from the diet.
Allen Lewis M.D. wrote in the Autism Society of America publication, Advocate, "Controlled studies of the GFCF diet and the ketogenic diet have indicated improvement. A dietary trial is safe and the best way to determine if dietary restrictions are of benefit."
Medical tests can determine if your child has a sensitivity or an allergy to gluten, casein and other foods. Any pediatrician or a physician from the DAN! (Defeat Autism Now!) list can order these tests before you begin the diet.
DAN doctor:
Dr. Miller - takes insurance
Lansdale Pa
1-215-412-4910
Nutritionist:
Janice Picking
1750 Zion Rd
Northfield, NJ 08225
(609) 484-9011
Before you consider a change in your child's diet, consult with a physician and nutritionist to make sure you are providing an adequate diet and nutritional supplements, if necessary. Also, please read any of the books about the diet (listed below).
Some advocates of dietary intervention suggest removing one food from the diet at a time, so you will know which food was causing a problem. It also is helpful to ask people who do not know about the dietary change if they see any improvement after a few weeks.
It's often suggested to remove milk first because the body will clear itself of milk/casein the quickest. Gluten may be removed a month after the elimination of milk. It may take up to six months on a gluten-free diet for the body to rid itself of all gluten. That is why most advocates suggest giving the diet a trial of six months.
The diet can seem like a lot of work, at first. You must carefully read the ingredients on food packages. Beware of "hidden" casein and gluten in ingredient lists, such as curds, caseinate, lactose, bran, spices or certain types of vinegar. It may be hard to locate a substitute for the milk your child loves, although many children do adapt to the gluten-free, casein-free (GFCF) soy, potato, almond and rice milk substitutes available. (Companies listed below). Many of these substitutes are enriched with calcium and Vitamin D. In addition, many parents provide vitamin and calcium supplements to their children on the diet.
Many communities have health food stores or regular supermarkets that stock flour, bread, crackers, cookies, pretzels, waffles and pasta made of rice, potato or other gluten-free flours. There also are several online and mail-order businesses that sell GFCF foods and vitamins. Also, some web sites list commercially-available foods that are gluten-free and casein-free, such as Heinz ketchup, Bush's Baked Beans and Ore-Ida Golden Fries. Some prepared foods originally developed for people with Celiac Disease, another form of gluten intolerance, now come in casein-free varieties, too. For fun or to save money, some families choose to make their own GFCF foods using some of the cookbooks below.
Foods that CAN be eaten on a gluten-free, casein-free diet include rice, quinoa, amaranth, potato, buckwheat flour, soy, corn, fruits, vegetables, beans, tapioca, meat, poultry, fish, shellfish, teff, nuts, eggs, and sorghum, among others.
Author Karyn Seroussi says her son now has no traces of autism, due in large part to a strict GFCF diet. Some parents report improved eye contact, less constipation or diarrhea, and better behavior. However, other parents do not notice a difference in their children.
Besides gluten and casein, some parents report that removing corn or soy led to equal or greater improvements in their children. Because soy protein is similar to gluten and casein, some diet proponents recommend removing it if the child seems sensitive.
Research into the GFCF diet continues. "Although the hypothesis may appear 'off the wall' in many respects, there are a number of pieces of evidence, which seem to support them. The ideas are compatible with virtually all the accepted biological data on autism and are therefore worthy of consideration. The dietary method must still be considered as experimental and no positive results can be promised or are claimed for every person," according to Paul Shattock and Dr. Paul Whiteley of the British Autism Research Unit at the University of Sunderland, which provides scientific information on the diet.
Books:
The Kid-Friendly ADHD and Autism Cookbook: The Ultimate Guide to the Gluten-Free, Casein-Free Diet. A book by two Defeat Autism Now practitioners, developmental pediatrician Pamela Compart M.D. and nutritionist Dana Laake. Advice for feeding picky eaters, and a good explanation of how and why the diet works. Recipes have information on calories, protein, fiber, etc., per serving.
Special Diets for Special Kids: Understanding and Implementing Special Diets to Aid in the Treatment of Autism and Related Developmental Disorders by Lisa Lewis, Ph.D. One of the first books to explain the gluten-free, casein-free diet and how it can help treat autism. Her explanation of the science behind the diet is not as easy to follow as Seroussi's. However, this book has more than 150 recipes for breads, cakes, candy, chili, macaroni and cheese, etc.
Special Diets for Special Kids, Two by Lisa Lewis, Ph.D. A sequel to her first book (above) with more than 175 new gluten-free, casein-free recipes and cooking tips. Recipes for peanut butter bread, bananaberry shake, oven fries, barbequed chicken pie and other foods that kids will eat.
Special Diets for Special People: Understanding and Implementing a Gluten-Free and Casein-Free Diet to Aid in the Treatment of Autism and Related Developmental Disorders. The newest how-to book and recipes by GFCF diet guru Lisa Lewis, Ph.D.
Parents should consult their child's health care provider about dietary changes
and nutritional supplements
Local health food stores:
Back To Nature Health Foods
State Highway 47 & 4
Rio Grande, NJ 08242
Phone: (609) 886-4027
Pamela’s Health and Harmony
8508 Ventnor Ave.
Margate, NJ 08402
(609) 822-8828
Bontera’s
Egg Harbor Twp
Honey Tree Natural Food Store
331 Tilton Rd, Northfield, New Jersey 08234
(at Tilton 9 Plaza, Egg Harbor Township)
(609) 641-6524
|
Court tells insurer to cover care of autism
Ruling on state benefits may have wider impact
Friday, September 14, 2007
BY SUSAN K. LIVIO AND DUNSTAN MCNICHOL
Star-Ledger Staff
The New Jersey Supreme Court has ordered a health insurance plan for state workers to pay for therapy for an autistic 5-year-old boy, a decision advocates said could set a precedent and help other families raising children with autism.
The high court on Wednesday upheld two appeals court opinions mandating the State Health Benefits Commission pay for speech, occupational and behavioral therapies for Jacob Micheletti of Milford, whose father, a deputy attorney general for the state, waged a two- year fight on behalf of his son.
The law has never mandated insurance carriers cover the cost of therapy for autism before, causing many families to go into debt to provide treatment prescribed for their children, family advocacy groups say.
"It's too early to tell what the ramifications will be, but we think it's precedent-setting, ground- breaking," said Art Ball, governmental affairs director for the New Jersey Center for Outreach & Services for the Autism Community. "We'd like to figure out a way to expand this so everybody can benefit, but it's not going to be easy."
Autism, a developmental disability which impairs communication, social interaction and learning, is a major concern in New Jersey. The U.S. Centers for Disease Control and Prevention estimate the national rate has increased to about one in 150 children, while one study indicated the incidence in
New Jersey is about one in 95.
Joseph Micheletti, the boy's father, predicted other families could seek the same coverage the court upheld for his son, which he estimated costs his family about $35,000 a year. He and his wife, Elizabeth, have maxed-out their home equity line of credit paying for Jake's care.
"(Families) go broke. That is not an overstatement," he said. "This should give an opening to the people who really need it."
A spokesman for Horizon, which administers the state benefits program, disagreed with that interpretation.
"We have not had a chance to review the court's decision or its implications, but it would appear to be limited to this case," Horizon spokesman Thomas Rubino said. "We haven't had an opportunity to review the case to know whether or not the court's ruling is a blanket mandate for all insurers to pay these costs. All mandates, however, increase health care costs and re sult in higher health insurance premiums."
A spokesman for the state Treasury Department declined to speculate on how the decision might affect the state budget, already struggling with a ballooning tab for health benefits.
"We are evaluating its content as well as its impact at this time," said Tom Vincz, the treasury spokesman. "I think there will be a lot of case-by-case evaluation of what would apply and what would not."
This year, the state budget included $1.1 billion for health benefits, and the cost is expected to grow past $2 billion within four years.
The state's benefits plan -- declared among the most generous in the nation by a consulting firm hired to review it several years ago -- covers about 520,000 working and retired teachers and government workers. An actuary's report released earlier this year said it will eventually cost taxpayers $69 billion to pay the benefits already promised to the workers enrolled in the system.
The Supreme Court upheld two appellate rulings that came down in January and May 2007. The January decision said the commission could not deny treatment for "a class of dependents, notably af flicted children, based on the na ture of their mental illness."
Doing so would violate the in tent of the state mental health par ity law, requiring health insurers to provide coverage of "biologically- based mental illness under the same terms and conditions as provided other sickness," the January decision said.
The state high court's order gave the state health benefits commission two weeks to pay about $18,000 in bills the Micheletti Family has already submitted to the state. For future bills, the court gave the state a 30-day reimburse ment deadline, according to the decision.
NEWS RELEASE
Governor Jon S. Corzine
September 12, 2007
FOR MORE INFORMATION: Press Office 609-777-2600
GOVERNOR CORZINE SIGNS BILLS ON AUTISM
West Windsor - Governor Jon S. Corzine today signed a package of
seven bills relating to autism spectrum disorders. These disorders
are often characterized by substantial impairments in social
interaction and communication and the presence of unusual behaviors
and interests.
"Today, we are enhancing New Jersey's pioneer status in the fight
against autism spectrum disorders by bolstering our arsenal of
programs, training, education, and research," said Governor Jon S.
Corzine. "This is an opportunity for New Jersey to become a model for
other states in researching the nature of autism and its causes as
well as in treating those with these disorders.
"More importantly, through these initiatives, we will be enabling
those impacted by autism spectrum disorders to function as
independent, productive, and empowered individuals."
The rate and diagnosis of autism spectrum disorders in New Jersey is
disproportionately high. While experts estimate the national rate has
increased to about 1 in 150 children, the incidence in New Jersey is
approximately 1 in 95.
"With new studies showing New Jersey with the highest reported autism
rates in the country, it is critically important that the state do
all it can to help the growing number of individuals and families
confronting autism spectrum disorders," said Assembly Speaker Joseph
J. Roberts, Jr. (D-Camden) who championed the legislative effort to
improve the detection, treatment and awareness of autism in New
Jersey.
"For families whose loved ones are locked in the grasp of this
disorder, today's action sends a reassuring message of hope that New
Jersey is working to do more to improve its safety net of services
and care," Roberts said. "These measures will enable New Jersey to
address the startling number of children being diagnosed with autism
and they will allow us to extend a helping hand to countless autistic
young adults and others who have aged out of the state's special
education system."
"A diagnosis of autism or developmental disability presents real
challenges for parents and caregivers," said Senator Ellen Karcher (D-
Mercer/Monmouth). "While the medical community seeks to find answers
to the causes of autism and developmental disability, states have an
obligation to promote programs which help those living with the
disability. These new lifesaving laws will help families deal with
the hardships of caring for individuals with autism."
"According to federal statistics, New Jersey has the highest number
of autism cases in the nation," said Senator Loretta Weinberg, (D-
Bergen). "We are still learning about the autism spectrum disorders,
but while we are learning, we must be able to provide much-needed
assistance to families living with autism. As the number of
residents living with autism increases, we must have the resources in
place to provide them with support programs and work to find ways to
decrease the incidence of autism in New Jersey."
The Governor signed A4055/S2558, providing for teacher training in
awareness and instruction methods for students with autism and other
developmental disabilities for candidates for teaching certificates,
current teachers and paraprofessionals. The Commissioner of Education
will develop recommendations to address a variety of issues including
the characteristics of students with autism and other developmental
disabilities; curriculum planning, assistive technology; and
inclusive educational practices.
"In a state with high autism rates, it's imperative that educators
have the tools to recognize autism and help children with this
confounding disorder," said Assemblyman Jim Whelan (D-Atlantic), a
veteran teacher with a master's in education. "Teachers are an
untapped resource in this state's growing efforts to help children
and adults with autism."
Other primary bill sponsors in the Assembly were: Assemblywoman
Valerie Vainieri Huttle (District 37) and Assemblywoman Joan Voss
(District 38). Primary Senate sponsors were: Senator Loretta
Weinberg (District 37) and Senator Ellen Karcher (District 12).
Governor Corzine also signed A4056/S2568, requiring the Early
Intervention Program in the Department of Health and Senior Services
to address the specific needs of children with autism spectrum
disorders and their families. These activities involve developing
guidelines for health care professionals to use in evaluating infants
and toddlers for autism, ensuring the timely referral by health care
professionals of infants and toddlers suspected of being on the
autism spectrum to the Early Intervention Program and collecting data
on statewide autism screening, diagnosis, and intervention programs
and systems.
"By establishing comprehensive guidelines for New Jersey
pediatricians to use in the evaluation and referral of autistic
children, we can ensure appropriate treatment for infants and
toddlers as soon as possible," said Assemblyman Herb Conaway, M.D. (D-
Burlington/Camden). "For autistic children, early detection is the
key to ensuring proper care."
Other primary bill sponsors in the Assembly were: Assemblyman Michael
Panter (District 12); Assemblywoman Valerie Vainieri Huttle (District
37) and Assemblyman Lou Greenwald (District 6). Primary Senate
sponsors were: Senator Loretta Weinberg (District 37) and Senator
Ellen Karcher (District 12)
Governor Corzine signed A4057/S2559, establishing the New Jersey
Adults with Autism Task Force in the Department of Human Services
(DHS). The purpose of the task force is to study, evaluate, and
develop recommendations relating to specific actionable measures to
support and meet the needs of adults with autism. These include job
training and placement, housing, and long-term care.
"New Jersey faces new challenges created by the rise in adults
classified with autism including the need for job training and
placement, housing and long-term care," said Assemblyman Gary Schaer
(D-Passaic/Bergen/Essex). "It's critical that we strengthen the
community of support for adults living with this lifelong disease."
Other primary Assembly sponsors were: Assemblywoman Joan Voss
(District 38) and Assemblyman John McKeon (District 27). Primary
sponsors in the Senate were: Senator Loretta Weinberg (District 37)
and Senator Ellen Karcher (District 12).
In addition, Governor Corzine signed S/698A4054, which makes changes
to the Governor's Council for Medical Research and Treatment of
Infantile Autism, renaming it the Governor's Council for Medical
Research and Treatment of Autism.
"There are going to be new challenges created by a growing number of
adults who are being classified with autism," said Assemblywoman Joan
Voss (D-Bergen). "The numbers clearly indicate that we need to step
up our efforts to help the thousands of families in this state that
have loved ones with autism disorders."
Other primary sponsors in the Assembly were: Assemblyman Gary Schaer
(District 36); and Assemblyman John McKeon (District 27). Primary
sponsors in the Senate were: Senator Loretta Weinberg (District 37)
and Senator Joe Vitale (District 19).
Governor Corzine signed A4059/S2569, extending funding for autism
medical research and treatment. The bill eliminates the five-
year "sunset" for the $1 surcharge established under P.L.2003, c.144
for each motor vehicle fine and penalty imposed by the court, which
is deposited in the "Autism Medical Research and Treatment Fund."
The fund provides the financial support funding for the grant and
contract awards of the Governor's Council for Medical Research and
Treatment of Autism.
"More than ever, New Jersey needs to muster more attention and
resources to help families, school districts, communities, and health
care providers deal with the challenge of rising autism diagnosis
rates," said Assemblyman David Mayer (D-Gloucester/Camden).
Other primary Assembly sponsors were: Assemblywoman Joan Voss
(District 38); Assemblyman Jim Whelan (District 2) and Assemblyman
Lou Greenwald (District 6). Primary Senate sponsors were Senator
Loretta Weinberg (District 37) and Senator Joseph Coniglio (District
38).
The Governor also signed A2306/S2723 requiring the Department of
Health and Senior Services (DHSS) to maintain a registry of reported
autism diagnoses. The DHSS, in consultation with the Department of
Human Services, will maintain an up-to-date registry to include a
record of all reported cases of autism that occur in New Jersey; each
reported case of autism in which the initial diagnosis is changed,
lost, or considered misdiagnosed; and any other information DHSS
deems relevant and appropriate to conduct thorough and complete
epidemiologic surveys of autism, to enable analysis of this problem,
and to plan for and provide services to children with autism and
their families.
"New Jersey has the nation's highest reported rates of autism and
this presents new challenges for families, schools and our state's
health-care network," said John Assemblyman McKeon (D-Essex). "This
registry will serve as an invaluable tool for the state to monitor
autism cases while ensuring that New Jersey continues to provide
services to meet the needs of the state's growing autism community."
Other primary bill sponsors in the Assembly were Assemblyman Nelson
Albano (District 1) and Assemblywoman Joan Voss (District 38).
Primary sponsors in the Senate were: Senator Andrew Ciesla (District
10) and Senator Diane Allen (District 7).
Governor Corzine also signed A2291/S690, which establishes an
Asperger's Syndrome Pilot Initiative in the Department of Human
Services. The initiative will provide vocational, educational and
social training services to persons with Asperger's Syndrome. This
will be accomplished through community-based service sites which
offer appropriate support; guidance and education that will enable
these individuals to further their education achieve gainful
employment and become broadly competent adults who are able to lead
fulfilling lives.
"Asperger's Syndrome was only recognized in the United States in
1994, 60 years after many European countries confirmed its
existence," said Assemblywoman Joan Voss (D-Bergen), whose adult son
has Asperger's. "There are so many adults and young adults who were
misdiagnosed over the years because there wasn't a correct diagnosis
for what was troubling them and there were no programs to meet their
needs. This pilot program will be a model to help people with
Asperger's acquire the socialization skills they need so they can
enjoy productive and happy lives."
Other primary bill sponsors in the Assembly were: Assemblyman Robert
Gordon (District 38) and Assemblyman Eric Munoz (District 21).
Primary sponsors in the Senate were: Senator Loretta Weinberg
(District 37) and Senator Ellen Karcher (District 12)
