Unlock Autism

Tomorrow, April 2, 2008 is a day committed to Autism on CNN TV. All day they will feature insight into Autism Spectrum Diseases. The CNN web site is already gearing up with tons of fresh content.

It remains one of the greatest mysteries of medicine. Although autism will be diagnosed in more than 25,000 U.S. children this year, more than new cases of childhood AIDS, diabetes and cancer combined, scientists and doctors still know very little about the neurological disorder. full story

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Seems a bit like covering one’s tracks here. Seizures and Autism commonly go – hand in hand and can trigger serious health issues which lie dormant in the body.

Written and owned By Michael Smith, North American Correspondent, MedPage Today Published: March 14, 2008

Reviewed by Dori F. Zaleznik, MD; Associate Clinical Professor of Medicine, Harvard Medical School, Boston.

ATLANTA, March 14 — An apparent increased risk of febrile seizures has led the CDC to soften one of its recommendations on immunizing children against measles, mumps, rubella, and varicella with a combination vaccine.

The agency had said the combination tetravalent vaccine against the four diseases (ProQuad) was to be preferred over vaccination with a trivalent measles, mumps, and rubella vaccine at the same time as a separate varicella shot.

That preferential recommendation has been withdrawn. The agency’s Advisory Committee on Immunization Practices (ACIP) now says there should be no preference, the CDC said in the March 14 issue of Morbidity and Mortality Weekly Report.

The change comes after review of data from the Vaccine Safety Datalink, which monitors vaccine safety, as well as preliminary results from a post-licensing study conducted by Merck, which makes the tetravalent vaccine.

The Vaccine Safety Datalink, the CDC said, showed a signal of increased risk for seizure among children ages 12 to 23 months who were given the tetravalent vaccine, compared with those who got the trivalent vaccine.

The increased rates were seen seven to 12 days after vaccination.

Once the signal was seen, the agency said, analysts used the Vaccine Safety Datalink for a study comparing seizure rates among children who got the tetravalent vaccine and those who got a trivalent vaccine plus a varicella vaccine at the same visit.

The analysis included 43,353 children ages 12 to 23 months who received the tetravalent vaccine and 314,599 who received the trivalent vaccine and varicella vaccine at the same visit.

The researchers reviewed medical records to validate the diagnosis and used a multivariate logistic regression to adjust for age and influenza season, the CDC said.

Results of that analysis showed:

* A rate of nine febrile seizures per 10,000 vaccinations among recipients of the tetravalent vaccine.
* The rate was four per 10,000 vaccinations among those who got the trivalent vaccine along with the varicella vaccine.
* The adjusted odds ratio was 2.3, with a 95% confidence interval from 1.6 to 3.2, which was significant at P<0.0001.
* Of the 166 children who had febrile seizures after vaccination and had hospitalization information available, 26 (or 16%) were admitted to a hospital.
* There were no deaths.

The advisory committee was told that interim data from the Merck post-licensing study showed a similar relative risk for seizure, although the difference did not reach statistical significance. Only about half of the final sample size needed was available for the analysis.

Neither study looked at the risk of a febrile seizure after the second recommended dose of the vaccine, at ages four through six years.

The CDC noted that the tetravalent vaccine is currently in short supply in the U.S., because of manufacturing problems not related to safety, and is not expected to be widely available before 2009.

The agency also said that febrile seizures are not uncommon in children and generally have an excellent prognosis.

Additional source: CDC
Source reference:
CDC “Update: Recommendations from the Advisory Committee on Immunization Practices (ACIP) regarding administration of combination MMRV vaccine” MMWR 2008; 57(10): 258-60.

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Written and owned by www.mayinstitute.org

Wednesday, March 12, 2008

Many individuals with autism have also been diagnosed with another disorder. This secondary condition is referred to as a “co-morbid” disorder. Many of these secondary conditions are psychiatric in nature and require attention from parents, teachers and professionals. The most common co-morbid disorders are attention deficit hyperactive disorder (ADHD), obsessive-compulsive disorder (OCD), and mood disorders, such as depression and bipolar disorder, and anxiety problems.

Diagnosing co-morbid disorders in children and adults with autism can be challenging because these individuals have difficulties with language, self-expression and social interactions. They may be unable to describe personal, internal feelings. Many do not speak at all, and some need specialized communication systems such as pictures, typing screens and basic sign language to communicate.

A proper diagnosis of a co-morbid disorder should be done by a qualified professional, such as a pediatrician, psychiatrist or psychologist. This specialist will be able to differentiate between the various disorders and provide a diagnosis based on direct observation of the individual’s behavior and actions, as well as reports from family members and teachers.

Below are some observable behaviors that might be associated with various co-morbid conditions. Note that many of these behaviors are characteristic of autism and do not necessarily indicate the presence of a psychiatric condition.

ADHD: Making careless mistakes; appearing not to listen; not following instructions; not finishing tasks; frequently losing items; fidgeting; squirming; difficulty in playing quietly; interrupting others; and not waiting for his or her turn.

OCD: Putting all chairs in place at the table; walking the same path at home or school; arranging items; counting items; repeating phrases; and needing to be first in line.

Depression: Sadness and excessive crying; little interest in previous favorite items; loss of appetite; and a lack of responsiveness to other people.

Anxiety: Increased breathing and heart rate, and strong avoidance of specific situations or items.

An accurate diagnosis is crucial in determining the most effective treatment, especially if medications are to be considered. Treatment for co-morbid disorders must be administered in the context of an individual’s comprehensive program plan. There are three components to this type of approach that are briefly described below.

First, any serious problem behavior – such as tantrums, hitting others, hurting oneself, or destroying property – must be addressed with a plan that includes:

Defining the behavior in observable terms;

Using rewards for good behavior;

Employing a specific consistent response to the behavior, such as ignoring, removing privileges, or directing to a task; and

Counting the number of occurrences each day.

Second, the child or adult should be taught ways to cope with situations that might result in problem behaviors. We do this by providing positive reinforcement and rewards, teaching in small steps, and offering assistance when it is needed.

Third, medications can be considered. Many children and adults with autism receive at least one medication for a psychiatric condition. The use of medication should not be seen as a failure, but as an important component of treatment along with a good plan for addressing behavior problems and a thorough program of instruction in skills. Further, the right medication – a stimulant, antidepressant, mood stabilizer, or antipsychotic – can help reduce behaviors such as impulsive or compulsive behaviors that interfere with establishing social skills and friendships.

Obtaining an accurate diagnosis of a co-morbid condition and determining an effective treatment plan based on careful observation and individual consideration will improve the quality of life for children and adults with autism. For more information, call (800) 778-7601, or visit www.mayinstitute.org

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What is SEED?

SEED stands for the Study to Explore Early Development. It is a 5-year, multi-site collaborative study that will help identify what might put children at risk for autism spectrum disorders (ASDs) and other developmental disabilities. It is being conducted by six study sites and a data coordinating center called the Centers for Autism and Developmental Disabilities Research and Epidemiology (CADDRE) Network.

What are the six CADDRE centers?

The six CADDRE centers are:

* California CADDRE: Kaiser Permanente Division of Research and the California Department of Health Services
* Colorado CADDRE: Colorado Department of Public Health and Environment and the University of Colorado at Denver and Heath Sciences Center
* Georgia CADDRE: the National Center on Birth Defects and Developmental Disabilities
* Maryland CADDRE: Johns Hopkins University and Kennedy Krieger Institute
* North Carolina CADDRE: University of North Carolina at Chapel Hill
* Pennsylvania CADDRE: University of Pennsylvania School of Nursing and The Children’s Hospital of Pennsylvania

Where exactly is SEED being conducted?

California

a two county area: Alameda and Santa Clara counties

Colorado

the seven-county Denver metropolitan area: (Arapahoe, Adams, Boulder, Broomfield, Denver, Douglas, and Jefferson counties).

Georgia (CDC)

the five-county metropolitan Atlanta area: Clayton, Cobb, DeKalb, Fulton, and Gwinnett counties.

Maryland

seven jurisdictions in northeastern Maryland: Anne Arundel, Baltimore, Carroll, Cecil, Harford and Howard Counties and Baltimore City.

North Carolina

a ten county area: Alamance, Chatham, Davidson, Durham, Forsyth, Guilford, Johnston, Orange, Randolph, and Wake counties.

Pennsylvania

three counties: Chester, Montgomery and Philadelphia counties.

*CDC also funds Michigan State University to run the study’s Data Coordinating Center and Johns Hopkins University to run the study’s central laboratory.

How were the sites selected?

The sites were originally picked through an open competitive review process in 2001 and funded for 5 years. The sites were selected based on the merit of their application. In 2006, CDC had a limited competitive review process and funded the sites for another 5 years.

How can I enroll my child into the study?

The study is a population based study – meaning that the participants will be recruited from all children and families in each study community who meet certain criteria rather then focusing on individuals at a specific clinic or school. Families of children with specific developmental conditions, as well as a random sample of all children born in the community will be invited to participate. If the invited family is interested, then we ask some questions to determine if they are eligible, and if they are eligible then the family is enrolled.

Can I sign my child up for this study?

Although families can self-refer to participate in this study, they have to fulfill certain criteria in order to be eligible. Some families who self refer may not be eligible. Our goal is to send letters of invitation to all families who may fulfill the eligibility criteria. By sending letters of invitation to as many eligible families as possible, we hope to enroll a representative sample of families in each study area.

Examples of the study eligibility criteria include – the child must be born within the study period, the child must be born and still living in the study area, they must have a legal guardian, they must know English or Spanish (although these vary by site), and they must also meet certain diagnostic criteria.

What will each study participant have to do?

Each parent or caregiver will have to answer questions about their child’s development and their family’s medical history. The study clinicians will perform a brief exam and developmental tests on the child. Each parent and child will have to give small samples of blood, cells from inside the mouth, and a sample of the child’s hair. Finally, we would access the mother’s and the child’s medical records.

Why are we only looking at children in 6 states?

The funding for the study allowed us to support 6 study sites around the country.

Why are we only looking at children between the ages of 2-5?

The study will focus on children who are 2 to 5 years old. This age range was selected to reduce the amount of time since pregnancy and early development so that parent recall of events during these time periods is better, so that medical information is easier to retrieve, so that families are less likely to have moved away from the study area, and it will also be nearer the beginning of treatment for children in developmental intervention programs.

What is being investigated, and why?

* Physical and behavioral characteristics – Autism is a complex disorder and we want to better understand the full range of characteristics that are associated with autism. In this way, we may also better understand how the different causes of autism may be associated with specific subgroups of children within the autism spectrum.
* Infection and immune function, including autoimmunity – We want to follow up on reports that infections, or an abnormal response to infection – called the body’s immune response – may increase the risk for autism.
* Reproductive and hormonal features – We want to follow up on reports that abnormal hormone function – perhaps in the mother when she is trying to get pregnant, or later during pregnancy, or even later in the child after birth – may be associated with autism.
* Gastrointestinal features – We want to follow-up on reports that children with autism have abnormal gastrointestinal function, and whether it may be related to the causes of autism.
* Genetic features – Autism is a highly genetic disorder, but in particular we want to see if the genes that may be related to risk factors we are investigating – such as the genes that control immune function – are associated with autism.
* Socio-demographic features – We want to better understand the social, demographic, and economic features of families that are associated with having a child with autism.
* Smoking and alcohol use in pregnancy – Substance use in pregnancy can potentially harm the developing fetus and so we want to see if these so-called lifestyle factors are associated with autism.
* Sleep features – We want to follow-up on reports that children with autism have abnormal sleep patterns.
* Select mercury exposures – There are several studies, including studies funded by the government, looking at environmental exposures related to autism including mercury. CADDRE didn’t want to duplicate the work of these other studies, but we chose to look at information on vaccines and other types of medical procedures that may have mercury exposure that we can get through medical records.
* Occupational exposures – There are several studies, including studies funded by the government, looking at environmental exposures related to autism including mercury. CADDRE didn’t want to duplicate the work of these other studies, but we chose to ask parents to report to us about possible exposures they may have had at their jobs.

We selected these research factors after an extensive review of the literature. We designated each of the factors as high priority based on the how strongly they seemed to be associated with ASD and what new information we needed to collect about each factor, balanced by how well we could study each factor with our particular study methods.

What “selected mercury exposures” will be studied? How will they be studied? Why were these selected?

The mercury exposures we are looking at relate to vaccines or other medical treatments that are being studied include – vaccines that the mom received during pregnancy, the child’s vaccine exposures after birth and specific other factors such as RhoGAM treatment in pregnancy if the mom has developed an immune response against the fetus that can harm it.

There are several studies, including studies funded by the government, looking at environmental exposures related to autism including mercury. SEED didn’t want to duplicate the work of these other studies, but since we are getting medical records, we choose to look at information on vaccines and other types of medical procedures that may have mercury exposure that we can get through medical records.

Will the study include vaccines as a potential cause of autism?

Yes, the study will include vaccines. The mercury exposures being studies include – vaccines that the mom received during pregnancy, the child’s vaccine exposures after birth and specific other factors such as RhoGAM treatment in pregnancy if the mom has developed an immune response against the fetus that can harm it.

There are several studies, including studies funded by the government, now looking at environmental exposures in autism such as mercury. SEED doesn’t want to duplicate the work of these other studies, but since we are getting medical records, we choose to look at information on vaccines and other types of medical procedures that may have mercury exposure that we can get through medical records.

Will CDC find out if thimerosal causes autism?

It is too soon to speculate on the results of the study. We hope the study will give us a better idea of which of the risk factors that we will be looking at seem to be the most important in causing autism.

If the study shows that thimerosal is a cause of autism, will CDC report the data? What guarantees does the public have that the findings won’t be covered up?

We will report all the findings of the study by following the normal scientific review process as soon as possible.

When the study is completed, will we know the causes of autism?

It is too soon to speculate on the results of the study. We hope the study will give us a better idea of which of the risk factors that we will be looking at seem to be the most important in causing autism. The causes may be related to genes, the environment, or a relationship between the two – such as if some groups of children with certain genes are more easily harmed by some environmental exposures.

Will this study find a prevention/cure for autism?

It is too soon to speculate on what we might find about the causes of autism. But, we are hopeful that the findings from SEED will help the development of future studies specifically designed to assess treatments among children with autism.

What are the other developmental disabilities being studied?

We will be studying a range of other developmental disabilities, including mental retardation, developmental delay, and other behavioral problems in early childhood.

Why are we looking at other developmental disabilities?

By comparing children with autism and children with other developmental disabilities we will try to see if the risk factors we observe in children with autism are unique to autism or if they are also important in children with other developmental problems.

Looking at children with other developmental disabilities will also provide a way of comparing responses of children with developmental disabilities, in general, versus typically developing children.

How will you get the names of children to invite into the study?

We are working with our partners in the community who serve children with developmental problems and through these partners we will be sending out letters to families to invite them to participate.

Why didn’t or doesn’t the 2001/2002 funding represent “the first national study”?

In the initial grant awards (2001/2002), the grantees were responsible for 3 activities: setting up monitoring programs for autism and other developmental disorders, collaboration on the multi-site epidemiologic study, and investigator-initiated special studies. Although the multi-site study was planned, funding levels were not adequate to implement the multi-site study during the 2002/2002 funding cycle. Consequently, implementation was delayed until the current funding cycle. All funds awarded to the grantees in the current grant cycle are dedicated to implementation of the multi-site study. The grantees competed for funding to continue their monitoring activities under a separate grant announcement earlier in 2006, and no funding will be available for investigator-initiated special studies.

In what way(s) will the sample populations be representative of all children?

It seems that by not including major states like New York, Illinois, Texas, etc. it’s hard to claim this is “nationally representative”? Further, how will the selection/recruitment processes ensure or foster generalizability?

The two groups of children with ASD and other developmental problems will be identified in multiple clinical and educational facilities in each community to insure that the participants are representative of all children with these types of developmental problems – and not just children who might be seen at a single clinic or intervention program. The third group of study children will be randomly selected from all children born in each community during the same time period so that they are representative of all children in the study area most of whom do not have developmental problems.

Although resources do not permit the sample to be drawn so that it is statistically representative of all children in the nation, by conducting the study in 6 different geographic areas across the country with diverse populations and by identifying children from multiple sources in each community we hope to have a study sample that more closely represents children with ASD, other developmental problems, and typical development across the country.

Will there be interim results or will the study first have results six or so years from now?

Many of the core study hypotheses will require that we have data collection completed on the full study sample before analysis can take be completed, but some interim analyses that require less than the full study sample may be possible. We don’t want to rush interim analyses, however, before we have a good representative sample of children.

What do you mean by “community diversity”?

SEED is located in select study areas within 6 states: 2 counties in the San Francisco, California area, 7 counties in the Denver, Colorado area, 5 counties in the Atlanta, Georgia area, 7 counties in the Baltimore and northeast Maryland area, 10 counties in central North Carolina, and 3 counties in the Philadelphia, Pennsylvania area.

These study areas include diverse communities and populations from which study participants will be drawn.

Can this really be classified as a national study since it only involves six states?

It is a multi-site study set in diverse communities in 6 locations around the country: California, Colorado, Georgia, Maryland, North Carolina, and Pennsylvania.

Although resources do not permit the sample to be drawn so that it is statistically representative of all children in the nation, by conducting the study in 6 different geographic areas across the country with diverse populations and by identifying children from multiple sources in each community we hope to have a study sample that more closely represents children with ASD, other developmental problems, and typical development across the country.

How will this give us national insight?

Compared to a study located in a single area, our study in six different areas gives us geographic and community diversity that will give us greater insights into the variability of who is at risk and what are the risk factors for autism.

What is the methodology for collecting the data? Same for each state?

Yes, all the sites are using a common study protocol – meaning they are following the same procedures for recruiting participants and collecting data so that, at the end, the data from all 6 sites can be pooled into a single large data base for analysis.

We will be asking participants to complete self-administered questionnaires; interviewing mothers about pregnancy-related issues and developmental conditions in their children; conducting a developmental exam of each study child to evaluate cognitive and

emotional development, language and adaptive skills, and motor skills, and a dysmorphology exam of the child (that will look at physical features that may indicate an underlying genetic condition); taking cheek swab and blood samples from the mother; father, and child; taking a hair sample from the child; and looking at the mother and child’s medical records.

Do all 2,700 of the children have an ASD?

No, there will be 900 children in each of 3 groups: children with ASDs, children with other developmental problems, and children drawn from the community most of whom are typically developing.

I live in one of the states with a CADDRE center. Who can I contact for more information about the study?

California CADDRE
Kaiser Permanente Division of Research
California Department of Health Services
Oakland, CA
510.620.3700

Colorado CADDRE
Colorado Department of Public Health and Environment
University of Colorado at Denver and Heath Sciences Center
Denver, CO
303.315.0066
303.692.2680

Georgia CADDRE
National Center on Birth Defects and Developmental Disabilities
Atlanta, GA
404.498.3800

Maryland CADDRE
Johns Hopkins University
Kennedy Krieger Institute
Baltimore, MD
877.868.8014

North Carolina CADDRE
University of North Carolina at Chapel Hill
Chapel Hill, NC
919.966.2068

Pennsylvania CADDRE
University of Pennsylvania School of Nursing
The Children’s Hospital of Pennsylvania
Philadelphia, PA
215.573.2469
215.590.7474

Date: December 19, 2007
Content source: National Center on Birth Defects and Developmental Disabilities

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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.

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By Amy Lennard Goehner,
Time Magazine, Dec. 24, 2007
A few months ago, I took my sons to buy shoes. Nate is 14 and autistic. Joey is 8 and “typical.” And I’m the parent — most of the time. Before we got to the store, Joey said to me, “If Nate has a tantrum, I can handle him. You just focus on buying shoes. I’m better at handling tantrums than you. Sometimes you just yell and it makes things worse. No offense.”
None taken. He’s absolutely right.
The “typically developing” siblings of autistic children are, in fact, the furthest thing from typical. Often, they are wiser and more mature than their age would suggest. And they have to be, given the myriad challenges they face: parental responsibility; a feeling of isolation from the rest of their family; confusion, fear, anger and embarrassment about their autistic sibling. And on top of all of it, guilt for having these feelings.
As their parents, there’s a lot we can do to help. For starters, we can educate them early on, by explaining their sibling’s disorder — a conversation that should be ongoing. Dr. Raun Melmed, co-founder and medical director of the Southwest Autism Research and Resource Center in Phoenix, suggests including non-autistic children in visits to the doctor or other autism professionals. Early intervention doesn’t have to be “thought of as being geared only to the involved child,” Melmed says. In his office, Melmed reassures siblings that “other brothers and sisters have negative and confusing thoughts about their [autistic] siblings. That is common.” He also instructs parents to reaffirm that message at home. “Parents need only acknowledge to their healthy children that they know what they are going through and that negative feelings are normal,” he says.
A great way for kids to feel “normal” is to meet other siblings of autistic children, which they can do at sibling workshops. At the Kennedy Krieger Institute for children with developmental disabilities in Baltimore, social worker Mary Snyder-Vogel runs a program called Sibshops. “The workshops give these kids the opportunity to realize they’re not alone,” Snyder-Vogel says. “[We play] a lot of games that help them interact and problem-solve with peers. Kids don’t even realize they’re getting support.”
At a recent Sibfun workshop at the Jewish Community Center on Manhattan’s Upper West Side, therapists used puppet shows to illustrate issues that are common among siblings of special-needs kids. When asked what they thought the puppets were feeling, the children in the audience needed no prompting, immediately shouting out words like sad, disappointed and jealous.
Siblings will commonly have negative feelings — some might never connect or want to connect with their autistic siblings — but the good news is that typical siblings often turn out to be more compassionate and caring than average. “These siblings have seen what it’s like to have a hard time in life,” says Sandra Harris, executive director of Rutgers University’s Douglass Developmental Disabilities Center, a program for people with autism spectrum disorders and their families, and author of Siblings of Children with Autism: A Guide for Families (Woodbine House).
There are many other, more specific challenges that affect siblings of special-needs kids — and many of them apply to sibling relationships of every kind. Here are some of the issues that most frequently confront typical siblings — and their families — with advice from professionals.

Challenge #1: “Why won’t he play with me?”

For younger siblings of autistic children, one of their first doses of reality usually comes when their older brother or sister won’t play. “The child on the [autism] spectrum may seem indifferent or have a meltdown when the sibling tries to interact,” says Rutgers’ Harris.

Seven-year-old Adam, whose autistic brother Jacob is 11, says, “I can’t really play games with Jacob like I can with my cousin Eric [also 11]. Jacob likes to play games on the computer — but by himself, not with me. He gets too angry if he loses and then doesn’t want to play.” Adam’s father, Paul, says soberly, “I’m sure Eric represents the brother Adam might have had.”

Solution: Find common ground

Parents can start by telling the typical sibling that his brother or sister “is doing the best he can, and here are some things you can do with him,” says Judy Levy, director of social work at the Kennedy Krieger Institute. “Maybe in the future he’ll be able to learn to play with you in other ways, but right now this is what he can do.”

Harris encourages parents to “find ways in which the siblings can relate [or] share an interest.” That can be something very simple, as Elliot learned at an early age. “It turns out my brothers [Benjamin and Aaron] are really ticklish,” says Elliot. “Tickling was a good way to bond with them, and for them to show affection back by laughing and wanting it again.” (And again and again — and again.)

Challenge #2: “It’s not fair!”

Every parent has heard his or her child say, “It’s not fair!” But for families with autistic and typical siblings, “not fair” is the reality, when it comes to one child being treated differently from the other. Martin Bounds has one autistic child, Charlie, 13, and one typical child, Alex, 15, about whom Bounds says, “He’d get very upset when he would bump his knee or complain of feeling sick. He thought we weren’t sufficiently concerned about him, in the spirit of ‘I could be over here dying, and all you care about is Charlie.’”

That may be overstatement, but such sentiments often stem from legitimate gripes. Bounds recalls when he and his wife attended an important fund-raiser for Charlie three years ago, on the same day Alex rode in an annual bike race. “Alex won the race for his age group and was really upset when we were not there to greet him at the finish line,” says Bounds. “As much as you try to balance schedules, as parents of an autistic child, you have to basically accept that you are going to have moments when you feel you have cheated your other children, and those moments are awful.”

Solution: Create special time

Harris urges parents to set aside alone-time with their typical kids every week. “Private time can even [include] riding in the car to pick up the laundry,” she says, “but since [the child is] with Daddy, [he or she is] the focus of his attention.”

Some kids, like Elliot, develop new hobbies as a way to spend time with a parent. “Gardening was something I could do with just my mom — it was never easy to get my mom to myself,” he says. Elliot began gardening five years ago; he’s now a junior judge at flower shows and grows about 330 varieties at home, including the 170 seedlings he has hybridized.

For single parents, however, eking out one-on-one time can be a daunting task. As a widowed mom, I know firsthand — we do the best we can with the time we have. Single dad Ron Barth says his autistic 9-year-old, Daniel, “dominates everything, so I have to make special moments with Nicole [age 15], like taking her shopping — without Daniel.” But, says Barth, “There aren’t enough of those moments.”

Challenge #3: “I’m scared!”

Some autistic children are aggressive, which can be scary and dangerous, especially for younger kids. And parents can’t possibly keep an eye on their kids every second — which is about the amount of time it took for one child I interviewed to get squirted in the eyes with Windex by her younger autistic brother. (She survived just fine.) Even my son Nate, who isn’t aggressive but is twice the size of Joey, often hugs Joey — tight. Very tight. Around the neck. When Joey yells “MOM!” I’ve learned to tell the difference between Mom, can you help me find my Gameboy? and MOM, he’s choking me!

Solution: Find a safe haven

“I tell parents to have a ’safe place,’ usually the child’s room, where the typical child can go while an adult handles the behavior problem,” says Harris. “Then, as soon as they can, the parents should comfort the typical child and help him or her understand what happened.”

Harris also suggests that parents develop an “intervention plan” to teach the child with autism alternate behaviors — such as asking to be left alone, or using words, cards or a special gesture — when he or she feels upset. “Kids with autism can learn to go their room, sit in a beanbag chair, or do something else that helps them calm themselves,” says Harris.

Challenge #4: “He’s so embarrassing!”

It’s common for siblings to feel embarrassed by their autistic brother or sister’s behavior in public, or to be reluctant to bring their friends home. Kelly Reynolds, 21, says it can be difficult introducing her autistic brother, Will, to her friends: “It’s hard to have a young child in an older kid’s body. [Will] may go up to one of my girlfriends and sit on her on the couch — which probably would have been cute when he was five years old but he’s 17 now,” Reynolds says. “That can be hard because you can tell when someone feels awkward or scared or thrown off.”

Solution: Encourage honesty — and laugh

“Interestingly, a lot of these [typical sibs] are more outspoken,” says Levy of the Kennedy Krieger Institute. “They’ll go up to people and say, ‘Yes, that’s my brother. He has special needs. Do you have any questions?’”

My son Joey is one of those kids. When he was 6, we were at a bus stop when Nate started jumping up and down and making weird noises — just being Nate. When Joey’s friend started making fun of Nate, Joey got right in her face and said, “Do NOT make fun of my brother again! Everybody learns differently.” They were my words coming from Joey’s mouth.

Several parents I interviewed said a sense of humor is key. “Your typical child can see the humor in the actions of his autistic siblings,” says Bounds, father to Charlie and Alex. “It’s okay to talk about his or her ‘weird brother’ in a way that signals that you both know this isn’t normal.”

When Nate does something bizarre in public, which is just about whenever he’s in public, Joey and I often give each other an Oh, my God! look and roll our eyes, which sort of says, “We’re in this together.”

Challenge #5: “I feel like the parent.”

Angela Bryan-Brown, 15, says she often feels like a parent to her 14-year-old brother Alasdair. “You don’t have a choice,” says Angie. “You’ve got to help out, and your parents can only do so much. They’re so stressed out.” Angie’s mom Florie Seery refers to Angie as “the third parent in the house” and “an old soul,” a phrase I’ve heard often from other parents.

Elliot says of his siblings’ disorder: “Even though I’m four years younger, it places me in the position of being the older brother. ”

Solution: Let sibs be children too

“It’s a challenge for children to feel that sense of responsibility for their sibling,” says Harris. “A wise parent works hard to temper that and to make the responsibilities fitting to the age of the siblings. An older sister can keep her brother entertained for half an hour because an older sister would typically do that to help out — but she’s not a parent.”

For young siblings, Harris suggests counseling them: “‘It’s wonderful to care about your brother, but you’re my little boy too. Because your brother has trouble learning sometimes, he might need help from you, but you’re not his mommy or daddy. We will take care of him when he needs help.’ That kind of message reaffirms one’s love and lifts that burden.”

Challenge #6: The holidays

“Attending loud, busy social gatherings with new sights, sounds, smells, intrusive relatives and strange places overwhelms the best of us, let alone those with sensitive sensory systems,” says Dr. Raun Melmed of the Southwest Autism Research and Resource Center. “Of course, when the child gets overwhelmed and melts down, so do the siblings and parents.”

“In short, holidays suck, especially the ones you spend outside your own home,” says dad, Bounds. “They’re full of the most dreaded thing in an autistic life — unstructured time. People get together with relatives and friends and talk — which is sort of hard to do when your child has your sister-in-law’s cat by the throat and is about to put him in the food processor.”

Solution: Ask family members to help

Harris suggests that parents “create a rotating team of adults. Each person spends a half-hour with the child, so that parents and siblings aren’t trapped, and the child doesn’t have to be exposed to the chaos of the party. Cousins and aunts can take a turn.”

Siblings, however, should be spared. “The typically developing kid wants the holiday to come. She’s off from school, she’s getting her present and she can’t really enjoy that” if she’s expected to take care of her autistic brother or sister, says social worker Snyder-Vogel.

Challenge #7: In adulthood, the sibs will become “parents”

Someday, inevitably, the sibling of an autistic child will most likely take on the role of guardian and advocate. “You’re basically at some point going to be their parent,” says Kelly Reynolds, 21. “Anyone I want to marry has to take that into account. In some ways you kind of feel like you already have a kid. … For me, it’s kind of a deal-breaker when someone can’t really get along with my brother. He’s such a big part of my life.”

Solution: Discuss future plans with adult children

Parents should talk about financial plans and any care arrangements that have been made, once typical siblings are old enough, says Harris in a recent article for the Autism Society of America. But this isn’t a discussion to initiate with younger children — unless they bring the topic up on their own.

Many of the children I interviewed showed deep concern for their autistic brothers and sisters. And nearly all of the professionals and doctors I talked with said that a disproportionate number of their students and residents were siblings of people with autism. “I’m very interested in trying to help find a cure,” says 15-year-old Elliot, who closely follows news about the disorder. “I’d just like to get a neat little pill someday for my siblings that they can pop in with their apple juice and hopefully be normal.”

Here is a direct link to the article..

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A website which lists the best places to live for those with Autism and in need of services, tolerance, acceptance and more. Its been a challenge to find good information on this topic. If you know of a good resource for this, please let us know. Is there a Best Place at all?If you want to share tips on where you live or in general, please post comments or send an email.

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And this will seem to explain why for some its a stomach and diet issue, for others cellular and for still others more cerebral symptoms.

Again, another connection to Meditating and insight form the Dali Lama.
Story By Jamie Talan.
It used to be dogma that the brain was shut away from the actions of the immune system, shielded from the outside forces of nature. But
that’s not how it is at all. In fact, thanks to the scientific detective work of Kevin Tracey, MD, it turns out that the brain talks
directly to the immune system, sending commands that control the body’s inflammatory response to infection and autoimmune diseases.
Understanding the intimate relationship is leading to a novel way to treat diseases triggered by a dangerous inflammatory response.
Dr. Tracey, director and chief executive of The Feinstein Institute for Medical Research, will be giving the 2007 Stetten
Lecture on Wednesday, Oct. 24, at the National Institutes of Health in Bethesda, MD. His talk – Physiology and Immunology of the Cholinergic
Anti-inflammatory Pathway – will highlight the discoveries made in his laboratory and the clinical trials underway to test the theory that
stimulation of the vagus nerve could block a rogue inflammatory response and treat a number of diseases, including life-threatening
sepsis.
With this new understanding of the vagus nerve’s role in regulating inflammation, scientists believe that they can tap into the
body’s natural healing defenses and calm the sepsis storm before it wipes out its victims.
Each year, 750,000 people in the United States develop severe sepsis, and 215,000 will die no matter how hard doctors fight to save them.
Sepsis is triggered by the body’s own overpowering immune response to a systemic infection, and hospitals are the battlegrounds for these
potentially lethal conditions.
The vagus nerve is located in the brainstem and snakes down from the brain to the heart and on through to the abdomen. Dr. Tracey and
others are now studying ways of altering the brain’s response or targeting the immune system itself as a way to control diseases.
Dr. Tracey is a neurosurgeon who came into research through the back door of the operating room. More than two decades ago, he was
treating a young girl whose body had been accidentally scorched by boiling water and she was fighting for her life to overcome sepsis. She didn’t make it.

Dr. Tracey headed into the laboratory to figure out why the body makes its own cells that can do fatal damage. Dr. Tracey discovered that the
vagus nerve speaks directly to the immune system through a neurochemical called acetylcholine. And stimulating the vagus nerve
sent commands to the immune system to stop pumping out toxic inflammatory markers. “This was so surprising to us,” said Dr. Tracey,
who immediately saw the potential to use vagus stimulation as a way to shut off abnormal immune system responses.
He calls this network “the inflammatory reflex.” Research is now underway to see whether tweaking the brain’s acetylcholine system could be a natural way to control the inflammatory response. Inflammation is key to many diseases – from autoimmune conditions like Crohn’s disease and rheumatoid arthritis to Alzheimer’s, where scientists have identified a strong inflammatory component.
Dr. Tracey has presented his work to the Dalai Lama, who has shown a great interest in the neurosciences and the mind-body
connection. He has also written a book called “Fatal Sequence,” about the double-edge sword of the immune system.

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By Charles Bankhead, Staff Writer, MedPage Today
Reviewed by Zalman S. Agus, MD; Emeritus Professor at the University of Pennsylvania School of Medicine.
August 30, 2007
add your knowledge 1 Add Your Knowledge™ Post     Additional Autism Coverage

BRISTOL, England, Aug. 30 — Autistic children have an impaired ability to place unfamiliar faces in memory, possibly explaining some of the social difficulties associated with the disorder, investigators here concluded.

Keep In Mind

* This study shows that children with autism appear to have a reduced ability to adapt mentally to faces that differ substantially from familiar faces.

* This study suggests that reduced facial recognition abilities might be related to social problems associated with autism.

* Note that the findings are based on a small number of patients.

Specifically, children with autism have difficulty with face identity aftereffect, the ability to fix in memory faces that are polar opposites of familiar faces, Elizabeth Pellicano, Ph.D., of the University of Bristol, and colleagues, reported online and in the September issue of Current Biology.

The human brain seemingly has the ability to encode new faces in a “face space,” Dr. Pellicano explained. Average or typical faces are in the center of the space. More distinctive faces lie toward the periphery, making them easier to distinguish from faces that are closer to average.

In people with normal face recognition abilities, she continued, the brain automatically places a new face in the face space on the basis of deviations from the average.

“The really neat bit is that the precise characteristics of what constitutes an average face are continuously updated based on our experiences in looking at other people,” said Dr. Pellicano.

In the current study, the face identity aftereffect capabilities of 14 high-functioning boys with autism spectrum disorder were compared with those of 15 age- and ability-matched nonautistic boys (mean age about 11 years in both groups).

Scores on standardized tests showed the two groups had similar verbal and nonverbal abilities, but they differed significantly on the Social Communication Questionnaire (P<0.001).

The study participants were introduced to the faces of “Dan” and “Jim,” who were described as “team captains.” The boys then viewed computer-generated faces that resembled Dan or Jim to varying degrees. The two groups of boys demonstrated similar ability to place the new faces on Dan’s or Jim’s team.

The boys then viewed computer-generated faces that had features that were opposite those of Dan or Jim. After viewing these distinctly different faces, the normal boys substantially improved their ability to place faces that resembled Dan or Jim on the correct team. In contrast, the autistic boys showed little improvement in their aftereffect abilities (P<0.05 versus the normal group).

In the group of autistic boys, aftereffect scores had a significant correlation with Social Communication Questionnaire scores (r= -0.60, P<0.05). For the typically developing boys no significant correlation existed between aftereffect and the communication scores.

Dr. Pellicano and colleagues examined a subgroup of nine autistic boys with high social communication scores associated with more symptoms related to socialization, communication, and restrictive/repetitive interests. The boys’ aftereffect was about one-third that of the typically developing boys (P<0.01).

Because the normal and autistic groups demonstrated similar precision for recognizing Dan-like and Jim-like faces, the investigators ruled out poor identification performance or task motivation as the cause of reduced aftereffect in the boys with autism. Moreover, the boys inspected the faces with a similar degree of intensity.

“Reduced attention to the adapting faces could potentially contribute to the weaker aftereffect in autism, and we see the relationship between adaptation and attention as a promising direction for future research,” the authors stated.

Although face-reading difficulties might contribute to the social problems characteristic of autism, an early lack of interest in social phenomena could contribute to development of atypical face-coding mechanisms, they added.

The authors had no disclosures. The study was supported by the Australian Research Council and the Experimental Psychology Society of England.
Additional Autism Coverage

Primary source: Current Biology
Source reference:
Pellicano E et al. “Abnormal adaptive face-coding mechanisms in children with autism spectrum disorder.” Curr Biol 2007; 17: 1508-1512.

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By Neil Osterweil, Senior Associate Editor, MedPage Today
Reviewed by Zalman S. Agus, MD; Emeritus Professor at the University of Pennsylvania School of Medicine.
September 06, 2007

DALLAS, Sept. 6 — Clues into how autism spectrum disorders work may emerge from mice with a mutation that makes them socially awkward but enhances cognitive abilities.

Points to Consider

* The research described here was conducted only in mice, and that it is not known whether the same findings apply to people.

* The genetic mutation the authors described is seen in only a small percentage of people with autism spectrum disorders.

Transgenic mice with a mutation in the gene encoding for neuroligin-3, a synaptic cellular adhesion molecule, showed both social impairment and enhanced spatial learning abilities, a mix typical of some patients with autism, Asperger’s syndrome, or related conditions, reported Thomas C. Südhof, M.D., of the University of Texas Southwestern here, and colleagues.

The behavioral changes the investigators observed in the mice were accompanied by increases of inhibitory synaptic transmission but not excitatory transmission, the authors reported online in Science Express, the rapid online version of Science.

“Our data strongly support the notion that a change in the inhibitory-excitatory balance contributes to the pathogenesis of autism spectrum disorders,” they wrote.

If it can be shown that the mouse model accurately mimics the pathology of autism, it would suggest the possibility of treating some forms of autism spectrum disorders with therapies that can attenuate inhibitory synaptic transmission, the investigators said.

To see whether autism may be caused by an imbalance in synaptic circuits, the authors bred mice with an R451C-substitution in the gene encoding for neuroligin-3. A related mutation in humans is associated with familial idiopathic autism.

The investigators also bred a line of neuroligin-3 knockout mice for comparison purposes. They found that both murine strains appeared to be physically normal and had normal life spans.

The genetic substitution resulted in about a 90% reduction in neurologin-3 in the forebrain, and the deletion of the gene results in complete absence of the cellular adhesion molecule. However, mice with the R451C-substitution had an increase in the strength of inhibitory synaptic impulses, whereas the knockout mice did not. There were no significant changes in excitatory synaptic transmission.

The investigators then looked at the behaviors of the animals with the gene substitution to see whether the changes in synaptic transmission translated into changes in social behavior.

They found that the R451C-substitution mice were no different from wild-type controls in the time they spent examining a new inanimate object in their cages. But when a new caged adult mouse was introduced, they showed a small but significant decrease in interaction times compared with wild-type mice.

Although the neuroligin-3 deficient mice had social deficits, they appeared to have enhanced spatial memory, taking fewer days to learn the location of the submerged platform in a swim test, and finding the platform location nearly twice as often as controls.

“This combination of electrophysiological and behavioral effects is quite remarkable,” Dr. Südhof said. “It was also significant that these mice did not exhibit any other impairment of nervous system function — there was no abnormal locomotor activity or motor coordination, for example. This was a selective change, with social impairment on the one hand, yet cognitive enhancement on the other.”

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