A Survey for Parents of Kids with Autism to Help Design Parenting Courses

At Lesley University in Cambridge, Mass., educators are planning a set of courses specifically designed to help parents of children with autism spectrum disorders. Elizabeth Stringer Keefe, the coordinator of the Severe Disabilities Graduation Special Education Program at Lesley, has posted a survey for parents to fill out online. It's anonymous, takes about 10 minutes to answer 10 questions, and the responses collected about the kinds of services children are receiving, and what concerns parents have, will guide the course designers.

Click on this link to take the survey.

I learned about this survey after writing to Elizabeth to ask about a day-long program on April 10, 2010, at the university, Realizing the Full Potential of Students with Asperger's Syndrome. The program is for special education administrators, teachers, occupational therapists, speech and language pathologists, psychologists, other educators as well as parents. The fee for the event is $65 and proceeds go to benefit the Asperger's Association of New England, an important advocacy and education group based in the Boston area.

The program includes four speakers, including Ellen Korin, a special educator and author of Asperger's Syndrome An Owner's Manual; Stephen Shore, a professor at Adelphi University and author of Beyond the Wall: Personal Experiences with Autism and Asperger's Syndrome, among other works; Karen Levine, a developmental psychologist and instructor at Harvard Medical School who co-founded the Boston Children's Hospital Autism program; and Ross Greene, associate clinical professor of psychiatry at Harvard Medical School and author of The Explosive Child.

This Asperger's program is the third annual speakers event Lesley has organized. Here is what Elizabeth explained to me in an e-mail:

Having been a classroom teacher, a consultant (I still consult to schools in the area of ASD) and now a university professor, I realize more than ever that training for those who work with children with ASD must go beyond standard teacher licensure. This is an area of specialty that cannot be covered to the extent necessary in teacher licensure programs, unfortunately, and requires a specific skill set and understanding. So, calling for specialized training for those working with kids with ASD is one initiative of my program.

In recognition that the cost of training is sometimes an impediment to teachers, parents and other professionals, I made a second initiative of the program the commitment to provide low-cost professional development for anyone working with this population.

And lastly, a third initiative of my program is to support our non-profit community partners, who support families and professionals outside of school settings. In my view this sets a good example for both the teachers that leave my program and for other colleges and universities. So, the last 3 events I have hosted for the series are charity events for a non-profit, with 100% of proceeds going to support the organization (my time is donated as well). This year I also asked Ellen Korin, and Drs. Levine, Greene and Shore to donate their time and they graciously obliged.

One consequence of the rising incident of autism spectrum disorders is an increase in the number of parent education opportunities. Finding the time to attend one of these events can be difficult—but it's essential to check out the opportunities near you, if only to understand what's going on. Especially in challenging seasons as the parent of someone with autism, it helps to see that these events are happening because it demonstrates that you are not alone, that there are people working to provide information, ideas, approaches to help.

One last point about educational events: if it costs money to attend, make sure to check out the source who is providing the information, to see if it is reputable. Or, simply seek out an event that's free of charge to attend (for it's possible you will have to pay for child care, already).

U.S. Version of "The Transporters" Video Series Designed for Autistic Children Arrives

The British autism researchers who recently made The Transporters, a series of animated videos to help young children aged 2 to 8 learn to recognize emotions and facial expressions, is unveiling a version of their DVD for the U.S. market.

The DVD, which has a series of 15, five-minute episodes and contains quizzes for viewers to review facial expressions from each episode, costs $57.50 with a portion of the proceeds going to autism research groups and charities including Autism Speaks. The DVDs are available starting January 12, 2009 at The Transporters.com.

There are quite a number of autism-related products aimed at families who are, of course, desperately interested in finding ways to help their kids make gains in communication skills, among other things. You won't find many product references or endorsements on Autism Bulletin because I don't want to recommend you spend precious dollars on anything.

The Transporters is interesting because when it first came out, about a year ago, it was a project supported by the British government, working with the Autism Research Centre at the University of Cambridge's medical school. The UK government supported the development of this video series and made it available to thousands of families at no cost.

I've asked the public relations company for The Transporters if they know of any plans to distribute this DVD to public libraries or other places where parents who can't afford the price may borrow the video.

The other reason this project is interesting is because the champion of The Transporters is well-known autism researcher Simon Baron-Cohen. In developing this project, researchers are leaning on the popularity of cars and trains among young autistic children (does your little one like Thomas the Tank Engine?) while embedding within the front of vehicles people's real faces and expressions. The episodes cover emotions like happy and sad, excited and angry, as well as more nuanced feelings like sorry, proud, surprised, unfriendly, tired, grumpy and worried. The researchers assume that there will be repetition involved in playing the short videos, to reinforce the impressions and messages.

In a press release accompanying the release of the U.S. version of the DVD, Baron-Cohen states:

"Imagine you're the parent of a child with autism and your child doesn't look up at your face, doesn't respond when you call their name, doesn't interact in the normal way. It can be really heartbreaking. The Transporters addresses this challenge by helping children with autism look at faces and recognize feelings. We've found a way to reach children with autism by bringing the social world to them rather than expecting them to come to us."

There are examples of the British version of The Transporters available on YouTube. You can see an example of The Transporters in this YouTube video clip, about five minutes long:



Also see this four-minute video with researcher Simon Baron-Cohen, and a clip showing a child answering questions from the quiz on the video.






Also see from Autism Bulletin archives:

Videos from British Autism Researchers Teach Children to Recognize Emotions

Audio: Interesting Show on Autism at "Studio 360"

"No matter how hard he tries he knows he can't fit into the NT [neurotypical] world."

That's how radio producer Tamar Brott describes Jonthan Mitchell, a 52-year-old writer who has Asperger's. He is very high-functioning on the autism spectrum, and he writes stories that delve into his feelings of alienation, longing, obsession and rejection of special education programs. A profile of Mitchell is the first five-minutes of an illuminating hour-long public radio program on the arts and society at Studio 360 with Kurt Andersen.

A key reason you might want to listen to the program is Andersen's conversation with Blythe Corbett, assistant professor of clinical psychiatry, at the M.I.N.D. Institute, University of California at Davis. The Institute is a leading venue for autism research, and Corbett discusses in very clear language how scientists are examining research trends in genetics, environmental and other threads of inquiry to help them understand the origins of autism spectrum disorders. (The gist is that researchers are in the early stages of their work, and they are looking at a combination of factors that could include genetics, environmental factors, parental age and more.)

Below, find an audio clip of the first 11 minutes of the episode, which profiles Mitchell and introduces the rest of the show:

Other parts of the show discuss an art project organized by the M.I.N.D. Institute, and discussions of Amanda Baggs, a well-known autistic video blogger and neurodiversity advocate, and the film Autism: The Musical.

Find the Studio 360 website with a writeup of this episode by clicking here.

Research Finds Families of Kids with Autism Try Five Simultaneous Treatments on Average

Parents of children with autism spectrum disorder don't try just one thing to help their children: they tackle multiple approaches, research from the Interactive Autism Network shows.

On average, children with autism undergo five simultaneous treatments, according to preliminary data published last month. The data comes from surveys filled out by more than 4,000 families.

As you will note from the list of most common treatments below, researchers define the term "treatment" broadly: it can mean services delivered by educators, therapists and medical prescription; special diet; treatment can also mean social stories, which use pictures and symbols as well as words to tell kids with autism what to expect on a family outing, dentist visit or other situation; social skills groups; and weighted blankets or vests.

The Most Common Approaches

Based on the survey data, the most common treatments are listed below:

1. Speech and language therapy
2. Occupational therapy
3. Applied Behavior Analysis (ABA)
4. Social skills groups
5. Picture Exchange Communication System (PECS)
6. Sensory integration therapy
7. Visual Schedules
8. Physical therapy
9. Social stories
10. Casein-free diet
11. Gluten-free diet
12. Weighted blanket or vest
13. Risperdal
14. Melatonin
15. Probiotics

What the Researchers Notice So Far

The list above accounts for more than half of the treatments that families filling out the surveys list, though researchers emphasize that they have to do a lot more analysis of their data to get a clearer picture of what's going on. See a public notice about the research here.

In fact, trying to get a clearer picture of what's going on is a main thrust of this project. The researchers note:

Hundreds of autism treatments are currently in use. In many cases, there is little or no scientific evidence to support their effectiveness. Parents of children with ASD, driven to help their children and knowing time is of the essence, are unable to wait for answers. They find themselves making all sorts of choices and trying all sorts of remedies, often in the absence of adequate information.

So many parents have gone through this: researching, agonizing, choosing, evaluating, dropping treatments, adding treatments... and trying to find a combination that keeps their child stable, healthy, present, and able to learn and grow. Most would agree that going through this process is a nightmare.

Parents need answers. Too many have participated, unwillingly, in the great autism treatment experiment. By collecting data on families' treatment experiences, IAN hopes to contribute to the effort to identify effective treatments, as well as to guide decision-makers prioritizing which not-yet-proven treatments to study.

That last note suggests that these researchers are seeking to apply some rigor to understanding parents' testimonies about what they see happening with their children—what works and what doesn't—so they can influence research directions in the future.

As for this survey sample, the researchers note that thousands of survey respondents reported that their kids are taking vitamins, minerals and prescription drugs. More specific data about this and other findings are due to be released at an unspecified future date.

Who is the Interactive Autism Network?

The Interactive Autism Network is a web-based project of the Kennedy Krieger Institute, a research and educational organization in Baltimore that specializes in developmental disabilities including autism spectrum disorders. The organization received funding from Autism Speaks, the major nonprofit group, to start the project in January 2006.

Request for Information: Researchers Compiling List of Autism Advocacy Groups in California

Researchers at Columbia University who are studying autism advocacy efforts under a grant from the National Institutes of Health are seeking information from the autism advocacy community to help them build a directory of California-based groups.

The researchers are looking into all the possible factors they can study to help explain why the prevalence of autism continues to rise. They plan to make the information they collect available to the public. They put out their request for information on Jan. 11, and are seeking this information by February 15, 2008.

You can learn more about the "Project on the Social Determinants of Autism" by clicking here. You can read an Autism Bulletin article on the project here: Study of Social, Environmental Factors in Autism Subject of High-Profile NIH Grant.

Here is the text of the request for information:

We are a group of researchers at Columbia University who would like to compile a list of autism advocacy and nonprofit organizations in the state of California into a comprehensive directory. We are interested in organizations of all sizes, types and locations. We hope to make this directory a publicly available all-inclusive resource serving the autism community, in addition to helping us answer some of our research questions related to understanding the autism epidemic.

This research is funded by the 2007 NIH Pioneer Award, to Peter Bearman.

If you work for or participate in an organization or group in California we would very much appreciate it if you could send us the name of the group and any contact information you may have. Once we build a complete list, we will contact those organizations directly.

To write us, please send an email to autism-iserp@columbia.edu. For further information on the project please visit our website at http://www.iserp.columbia.edu/centers/autism.html. Thank you in advance for your time and assistance in accomplishing this project.

More About the Research Project

Background from the group's website:

Since 1965 advocacy and nonprofit organizations have played a priceless role in thrusting autism into the public eye through working with local communities, lobbying on national legislative levels, and pushing for funding of autism research. The parent-researcher-advocate triad model was and continues to be critical to the evolution of the autism advocacy movement.

In our project, we are aiming at a better understanding of the diverse roles and scope of activities of these organizations , how efficacious the autism advocacy movement has been and its role in disseminating information about autism and autism spectrum disorders to the public.

Researchers Identify Genetic Flaw in One Percent of Autism Cases Studied

Researchers at the Boston-based Autism Consortium today said they had discovered evidence that a genetic flaw appeared to play an important role in about one percent of 1,500 autism cases studied. While the findings, called a chromosomal abnormality on chromosome 16, represent a very small portion of the autism population, scientists hailed them as a promising clue for more research into the possible causes of autism spectrum disorders.

The New England Journal of Medicine published the study (titled "Association between Microdeletion and Microduplication at 16p11.2 and Autism") on its website, which you can find here. The Autism Consortium published a press release about the research here. And The New York Times posted a useful summary about the research in an article "Study Says DNA Flaw May Raise Autism Risk."

The Times story includes this quote: “This is a fantastic study, in that it points us toward a path, gives us an idea of where to look,” said Thomas Lehner, chief of the genomics research branch at the National Institute of Mental Health, who was not involved in the research. “However, it also shows we have a long way to go to understand what is a very complex disorder.”

The researchers said the analysis they performed indicated that, the chromosomal flaw, "was de novo, a newly occurring change in the DNA that the affected individual did not directly inherit from either parent" in the majority of cases studied. This chromosomal flaw leads to a susceptibility for autism spectrum disorders.

About the Researchers and What Happens Next

It takes a lot of high-powered researchers and costly information technology to administer DNA tests and process genomic research; that much is clear from reading materials provided by of the Autism Consortium. One goal the researchers have is to reduce the costs of these tests so they can collect more samples.

The Consortium statement adds:

Future plans of the Autism Consortium include further analyses to identify additional genes involved in ASDs, research to understand traits that may be associated with specific genetic differences and the mechanisms at work. The ultimate goal is to better understand the efficacy of current treatments available and to develop new treatments.

Eric Lander, Director of the Broad Institute of MIT and Harvard said “Our collaboration with the Autism Consortium is changing the face of research in autism spectrum disorders. We are beginning to develop a full understanding of the autism spectrum disorder genome, which in turn leads us to understanding the different types of autism, the etiology and effect of each type, and ultimately, will lead to the discovery of treatments that have the greatest promise.”

In addition to medical researchers and geneticists at a group of 14 Boston area hospitals, the research involves the Autism Genome Research Exchange (AGRE), a program of Autism Speaks, which officials said seeks to share genetic data with the scientific community in what sounds a bit like an open source software project. The project allowed researchers to scan genetic data from more than 3,000 people, including 1,441 diagnosed with an autism spectrum disorder.

In addition to the genetic database information, the AGRE database included information on traits and behaviors of the individuals. The Autism Consortium team took advantage of a new gene scanning technology from Affymetrix, a Silicon Valley company that provides analytics tools for genetic researchers; and deCODE Genetics Inc. in Iceland, a biopharmaceutical company that studies genetics so it can produce new drugs.

The Autism Consortium itself includes 14 leading universities and medical centers in the Boston area. Here's more from the press release description:

The Consortium includes families, researchers and clinicians who have joined together to radically accelerate research and enhance clinical care for autism spectrum disorders. A private nonprofit, funded entirely by donors, the Consortium is ground-breaking in a number of ways. We focus on families, linking them to the resources they need and supporting them in participating in research studies to understand and treat autism spectrum disorders.

The Consortium brings together the best minds across Boston, from Beth Israel Deaconess Medical Center, Boston Medical Center, Boston University, Boston University School of Medicine, Broad Institute of MIT and Harvard, Cambridge Health Alliance, Children’s Hospital Boston, Harvard University, Harvard Medical School, Massachusetts General Hospital, Massachusetts Institute of Technology, McLean Hospital and the Floating Hospital at Tufts-New England Medical Center.

California Study: Autism Cases Rise in Spite of Vaccine Changes

California public health researchers have found that the prevalence of autism spectrum disorders in young children has risen, even after doctors stopped using a mercury-containing preservative thimerosal in the vaccines babies receive.

The study, "Continuing Increases in Autism Reported to California Developmental Services System," is published in the January 2008 issue of Archives of General Psychiatry. The journal has made the full text of the article available online here.

The study asked: Since people are concerned that the mercury preservative used in vaccines causes autism, what happened after 1999, when the government and doctors recommended the nation stop using vaccines containing thimerosal for infant inoculations such as DTP (diphtheria, tetanus and pertussis) and hepatitis B?

Instead of seeing a decrease in autism diagnoses, the state Department of Developmental Services (DDS) saw an increase in the estimated prevalence of autism cases. For each quarter from 1995 through the end of 2003, the prevalence of autism increased from 0.6 to 2.9 per 1,000 live births. (The prevalence for all developmental disabilities including autism also increased, from 5.4 to 8.9 per 1,000.)

The study authors continue: "From 2004 through March 2007, when we estimate exposure to thimerosal-containing vaccines during infancy and early childhood declined, the prevalence of children aged 3 to 5 years receiving services for autism continued to increase from 3.0 to 4.1 per 1,000 lives births."

The authors report in their conclusion:

Infants and toddlers in the United States were exposed to more of the ethylmercury-containing preservative, thimerosal, after recommendations in 1991 for universal administration of the hepatitis B virus and Hib [Haemophilus influenzae type b] vaccines.

They have been exposed to less thimerosal since at least the national recommendation in 1999 for its removal from childhood vaccines. If thimerosal exposure is a primary cause of autism, then the prevalence of autism would be predicted to decrease as young children's exposure to thimerosal has sharply decreased to its lowest levels in decades. We have instead found that the prevalence of autism in children reported to the DDS has increased consistently for children born from 1989 through 2003, inclusive of the period when exposure to TCVs [thimerosal-containing vaccines] has declined.

Moreover, since 2004, the absolute increase and the rate of increase in DDS clients aged 3 to 5 years with autism were higher than those in DDS clients of the same ages with any eligible condition, including autism. These time trends are inconsistent with the hypothesis that thimerosal exposure is a primary cause of autism in California.

Context for the California Study

This is the latest in a series of published research articles that fail to find a causal link between thimerosal and autism. There have been numerous media reports, analysis pieces, opinion articles, and books urging parents to trust the research and get their kids vaccinated.

Meanwhile, a special court in Washington is hearing a series of cases arguing that evidence shows that vaccines harmed their children and demanding compensatory damages.

But while ABC News reports today that the latest California study "may be the latest nail in the coffin of a theory that draws a link between the mercury-containing vaccine additive thimerosal and autism," the controversy is likely to continue.

The same day as the research report came out, the advocacy group SafeMinds.org, which supports research on the "potential harmful effects of mercury and thimerosal," had posted this note about the California study:

SafeMinds arrives at a different interpretation of the findings, showing that the data can equally support a primary causative role of thimerosal if autism causation is multifactorial. Vaccine components and environmental mercury, as well as other toxicants, are additional likely candidates. Deficiencies of the DDS data and imprecise thimerosal exposure assumptions make determination of the contribution of thimerosal to autism rates difficult. The increase in autism cases reported by Schechter and Grether since the 1980s highlights the urgency of the autism epidemic and the need to institute a rigorous and comprehensive environmental factors research program.

Also see:

* Autism: Why the Debate Rages, an article by CBS News correspondent Sharyl Attkisson.

* Scientists Raise Voices Against Parents Vaccinophobia

* Medical Journal Traces Vaccine Controversy to Moment When Doctors Failed to Communicate Clearly About Risks

* Special Court to Hear Autism Case

Autism Bulletin's 2007 Advocates of the Year

The past year saw important news for the autism community, including a big push by the American Academy of Pediatrics to make its members more aware of the need to diagnose autism spectrum disorders early, and big wins in South Carolina and Texas by advocates seeking to get health insurance companies to cover autism services.

Autism Bulletin's 2007 Advocates of the Year list includes the people and organizations behind those big events. It also includes other people and groups who made a difference—including a number of individuals nominated by readers. Thanks to everyone who shared their thoughts on these individuals' important efforts. Here are the picks for Autism Bulletin's advocates of the year:

The American Academy of Pediatrics.
It was big news in the fall when the American Academy of Pediatrics issued a call for doctors across the United States to offer routine diagnostic screenings for autism spectrum disorders. The group that has 60,000 members also published papers to educate its members about autism and what treatments offer important help for people on the spectrum, and a special package for doctors to educate themselves about ASD. The move is important as an awareness campaign, but its impact could have larger repercussions as it firmly legitimizes therapies such as Applied Behavior Analysis (ABA) which some insurers, school officials and medical professionals considered "experimental" and provides concrete baselines for service levels (25 hours per week, 12 months per year) for such therapies.

The South Carolina Parents Who Won "Ryan's Law."
There were tears, hugs and celebrations in the lobby of the South Carolina capitol building last June, and they were justified: the state Legislature had just overridden the governor's veto to pass legislation that requires health insurers to cover services for children with autism up to age 16. Not only did these parents and other advocates led by Lorri Unumb (Ryan's mom) and Lisa Rollins work tirelessly to educate state lawmakers about the need—and relatively modest costs—for such coverage. They have organized advocates from around the nation to share strategies and tactics to work for similar legislation in others states. We saw legislation pass in Texas and have been watching as advocates working in Michigan, Arizona, California and Florida, among other states, seek to follow South Carolina's lead.

Sandee and Jeff Winkelman, Who Argued for Parents' Rights (and Won).
The parents of Jacob Winkelman of Parma, Ohio, fought and won the right for parents across the nation to argue on behalf of their disabled children in federal court. In a 7-2 decision in May, the U.S. Supreme Court ruled that federal special education law grants parents "independent, enforceable rights" separate from their children and therefore they can pursue those rights in court—without a lawyer if necessary—so they can advocate for their child to receive a free and appropriate education. Other parents of autistic children understood the Winkelman's plight: when you have to pay tens of thousands of dollars for autism-related services and schooling, who has the money for a lawyer to fight for services in court? The Supreme Court said they didn't have to be lawyers to fight the good fight.

Senator Hillary Rodham Clinton.
Clinton, the New York Senator who is in a dogfight for the Democratic presidential nomination, this year demonstrated a willingness to be a front-and-center advocate among policy makers in Washington D.C. for people with autism and their families. In March, Clinton and Sen. Wayne Allard, a Colorado Republican, filed legislation that would expand autism services and research. Then this fall, on the campaign trail, Clinton made the loudest call for increased spending on research, education and support services for people with autism, pledging to spend $700 million per year if elected. Yes, it's that time of the political season when we hear lots of promises. And other candidates (only Democrats so far) have noted the need to do something more for people with autism. But no one else has made such pointed, specific proposals for autism. At least not yet.

The Asperger's Association of New England.
It was almost a year ago that a murderous stabbing in a Lincoln-Sudbury High School bathroom in the Boston suburbs shocked the region where I live. It turned out that the 16-year-old who allegedly killed a fellow student has an Asperger's diagnosis, a fact which his lawyer has made central to his defense. The Asperger's Association of New England took it upon itself to invite the public to discuss the diagnosis and assert that physical violence is not at all typical of people with the condition. The group's leaders fielded many media calls and sought to enlighten the public and spread awareness about Asperger's. A footnote to the tragedy: local media have reported the special education program which the Asperger's student attended is no longer hosted at the high school.

Angela Mouzakitis, BCBA.
ABA needs more voices like that of Angela Mouzakitis. Mouzakitis publishes the blog Applied Behavior Analysis: Current Topics, and is a board certified behavior analyst (BCBA) who teaches in the graduate special education program at City University of New York's Queens College. Her essays are always professional, sometimes technical and academic—but throughout she conveys a passion for helping kids on the autism spectrum, for creating new educators who share her passion. Along the way she demonstrates an open-minded approach to practitioners of other kinds of therapies.

Parents and Siblings Who Teach Others About Autism

Karra Barber is the mother of a teenager with Asperger's Syndrome who has brought energy to her advocacy work in California. Her website has a useful list of Asperger's support programs in California, among other resources. A reader writes that she was a leader in the founding of a summer camp for film-making for kids who have trouble communicating at Saint Mary's College in Moraga, Calif.

Morton Ann Gernsbacher, a psychology professor at the University of Wisconsin at Madison and past president of the Association for Psychological Science, has made understanding autism one of her research priorities since her son received an autism spectrum disorder diagnosis. An Autism Bulletin reader notes that Gernsbacher's work to make therapists aware about autism and to battle prejudicial perceptions of people with ASD is essential.

Renee Henderson, a Philadelphia-area mother and advocate, has established a group called Autism Sharing and Parenting, which organizes support groups and parent workshops in Philadelphia and Montgomery Counties in Pennsylvania. A reader writes that Renee, who started the group three years ago, spends many hours helping families make daily picture schedules using Boardmaker, and providing a helpful and supportive ear, and adds: "She is making a difference by teaching parents how to become better advocates for their children, by providing parents with the information, tools and resources needed to improve their quality of life."

Nicholas Lombardi, who is now 12, was in the mall with his younger brother Joey and his mom when Joey took off his shoes and started running. "As the people stared I found my self very angry," Nicholas writes in an essay published on the Autism Speaks website. "Not at him, not really at them, but maybe at autism. I wished there could be a way… to have people understand. A voice." Nicholas decided to create a button for his brother and other autistic kids to wear that says "I'm not misbehaving, I have autism. Please be understanding." Sales of the button in English and Spanish, has raised more than $8,000 so far at Autism Speaks online store.

Recognizing Continued Advocacy Efforts

As noted in the 2006 list of advocates, there are a number of organizations who deserve credit for their ongoing efforts on behalf of people with autism and their families. These include advocacy organizations like the Autism Society of America (which this year announced a partnership with Easter Seals to improve access to services), and Autism Speaks (which merged with Cure Autism Now). Though both groups are large and as such, have their critics and controversies, they are amassing the resources needed to make a national impact.

Others who have continued and expanded their worthy efforts include:

* The center builders, such as The Friends of Children with Special Needs in Fremont, Calif. and the Autism Center of Pittsburgh, an outgrowth of the advocacy and support work at AutismLink.

* Medical researchers. The projects funded by public and private sources, both in the United States and abroad, are aimed at new understanding of autism's potential causes and treatments. See "Large Children's Health Study Cites Autism as One of Key Target Areas" and "British Researchers Unveil Brain Imaging Center" as two examples.

* Educators. This year, Autism Bulletin started an autism schools map project to build a directory for parents seeking options. The map is filling up with examples of organizations committed to helping kids, from the Claremont Autism Center in California to the Connecticut Center for Child Development to the Florida Autism Center for Excellence (FACE) School in Tampa.

Others Worth Noting

* Ivan Corea and others at the National Autistic Society in the United Kingdom, whose advocacy and awareness efforts included a meeting with former Prime Minister Tony Blair.

* Writers who shared their experiences as parents, including Roy Richard Grinker and Portia Iverson. And Tim Page, who wrote movingly of growing up with Asperger's.

* The British author Nick Hornby, who uses his success to sustain the TreeHouse school in London he helped to found, and even from time to time, uses his book reviews in The Believer to spread awareness, though his own experiences, when he writes about autism.

* IEP Advocates like Barbara Ball of Newton, Mass., upon whom parents rely for advice and support.

Thanks to all of these individuals and organizations for their efforts.

Government Panel Seeks Input on Autism Research Priorities

What should the nation prioritize to advance research on the treatment of autism spectrum disorders (ASD)? On the diagnosis of autism? Risk factors for autism? The biology autism? Or other areas?

The National Institute of Mental Health has issued a request for information to members of the autism community asking for information on what community members believe should be the priorities for autism research.

The deadline for submitting information is January 4, 2008. The Interagency Autism Coordinating Committee established by the Combating Autism Act of 2006 will use the input to develop a strategic plan. The request is aimed at people with autism spectrum disorders, their families, advocates, scientists health professionals, therapists, educators, state and local programs for ASD, and the general public.

You can read the request for information here. An excerpt from the document explains:

The Combating Autism Act of 2006 (Public Law 109-416) re-established the Interagency Autism Coordinating Committee (IACC) and requires that the IACC develop a strategic plan for ASD research. The IACC includes both Federal and public members who are active in the area of ASD research funding, services, or advocacy. In its inaugural meeting on November 30, 2007, the IACC approved a process for developing the strategic plan that includes multiple opportunities for stakeholder input. This RFI is a first step in receiving broad input at the beginning stages of plan development.

To identify research priorities for possible inclusion in the strategic plan for ASD research, the IACC will convene several scientific workshops in January 2008. The responses received through this RFI will be collated, summarized, and provided to workshop participants. The scientific workshops will be organized around four broad areas of ASD research:

• Treatment – includes ASD treatment, intervention, and services research that aim to reduce symptoms, promote development, and improve outcomes. This area includes the development and evaluation of medical, behavioral, educational, and complementary interventions for ASD. In addition, this area includes research studies that evaluate the effectiveness of treatments in real world settings, disparities in ASD treatment among specific subpopulations, practice patterns in ASD programs and services, and their cost-effectiveness.
• Diagnosis – is concerned with the accurate and valid description of ASD (phenotype) both at the individual and the population level. The public health impact of ASD can be better understood by such studies. In addition, this area concerns itself with the diversity of what constitutes ASD and the characteristics of the condition over the lifespan.
• Risk Factors – has to do with investigations of the factors that contribute to the risk of having an ASD in a given person or population. This includes genetic studies of clusters or sporadic occurrences of ASD, studies that focus on environmental factors, e.g., intrauterine events or exposure to toxins, which could lead to ASD, and the interaction between these factors that concentrate risk for ASD.
• Biology –studies the underlying biological processes that lead to developmental and medical problems associated with ASD. This includes research in the area of neurosciences but does not confine itself to neurosciences. Therefore, research on other organ systems, interactions between organ systems, and/or other disease processes are included in this area.

The development of the strategic plan is expected to take approximately six months and will include several additional opportunities for public input.

Send your ideas to the Interagency Autism Coordinating Committee at iacc@mail.nih.gov. Please read the guidelines before doing so, such as the need to mark proprietary information and the requested two-page limit for comments.

Also see:

* Advocates, Parents Among Those Appointed to Autism Committee at National Institutes of Health

Advocates, Parents Among Those Appointed to Autism Committee at National Institutes of Health

One theme of the Combating Autism Act of 2006 was to do more to coordinate federal government efforts on autism research and diagnostic screening along with autism services and education programs. Following this directive, Mike Leavitt, the Bush Administration's secretary of Health and Human Services, on Nov. 27 announced 19 appointments to the government's Interagency Autism Coordinating Committee.

The committee's goal is to make sure government agencies are sharing information so they can coordinate their respective efforts on various autism-related programs. You can read Leavitt's full announcement by clicking here.

While the law calls for the director of the Centers for Disease Control to be appointed to this panel, Leavitt instead appointed another CDC official to represent the agency head, Julie Gerberding. (You can read the text of the Combating Autism Act here in a PDF file. For those of you interested in the specific section of the law pertaining to this committee, read to the end of this post.)

The committee chair is Thomas R. Insel, M.D., director of National Institutes for Mental Health. "The committee's first priority will be to develop a strategic plan for autism research that can guide public and private investments to make the greatest difference for families struggling with autism," Dr. Insel said in a statement.

Four Parents, One Autistic Adult Appointed to the Committee

The law calls for the committee to have one-third of its members come from the public at large, and at least one person with autism, one parent and one member of the autism advocacy organization. Levitt's six choices to fill these roles are below, with notes from the government's press release and some associated website links:

Stephen Shore, Ed.D., the executive director of Autism Spectrum Disorder Consulting. See his website at www.autismasperger.net. Shore has an autism spectrum disorder diagnosis. He is an education consultant who is an expert "on adult issues pertinent to education, relationships, employment, advocacy, and disclosure." Shore serves on the board of the Autism Society of America, as board president of the Asperger's Association of New England, and is on the board of directors for Unlocking Autism, the Autism Services Association of Massachusetts, MAAP Services, The College Internship Program, and the KEEN Foundation.

Parent Lee Grossman, the president and CEO of Autism Society of America (ASA), a leading advocacy organization based near Washington D.C. He is the parent of a young adult son with autism. Mr. Grossman is also the chair of the ASA Foundation and a member of the ASA Environmental Health Advisory Board.

Parent Christine McKee is a lawyer who has developed and manages an in-home therapy for her autistic child. She participates in monthly consultations with a Board Certified Behavior Analyst/Speech Pathologist. She applies the therapeutic measures in her daily parenting and childcare routines.

Parent Lyn Redwood is co-founder and president of the advocacy group Coalition for Safe Minds. The coalition is a private nonprofit organization "founded to investigate and raise awareness of the risks to infants and children of exposure to mercury from medical products, including thimerosal in vaccines." She is a nurse practitioner who has 25 years of experience, and began her advocacy efforts for autism research after her son was diagnosed with pervasive development disorder in 1999."

Parent and sibling Alison Tepper Singer is executive vice president of Autism Speaks and is a member of the board of directors. Prior to joining Autism Speaks, Ms. Singer spent 14 years at CNBC and NBC where she served in several positions. She has both a daughter and an older brother with autism, giving her long-term, personal experience with the disorder.

Yvette Janvier, M.D., is the medical director for Children's Specialized Hospital in New Jersey. Dr. Janvier is also a clinical assistant professor in the Department of Pediatrics, Robert Wood Johnson Medical School. Her specialties are autism and developmental and behavioral
pediatrics. Dr. Janvier is a fellow of the American Academy of Pediatrics.

Government Officials on Committee

Secretary Leavitt appointed 13 government officials and researchers to this committee. They are:

Duane Alexander, M.D., director of the National Institute of Child Health and Human Development at NIH. The Institute supports research on all stages of human development, from preconception to adulthood, to better understand the health of children, adults, families, and communities.

James Battey, M.D., is director of the National Institute on Deafness and Other Communications Disorders at NIH. The Institute supports biomedical and behavioral research and research training in the normal and disordered processes of hearing, balance, smell, taste, voice, speech, and language.

Ellen Blackwell is a social worker and health insurance specialist of the Division of Community and Institutional Services, Disabled and Elderly Health Programs Group, Center for Medicaid and State Operations, Centers for Medicare and Medicaid Services where she serves as an expert on policies that affect individuals with autism spectrum disorders.

Margaret Giannini, M.D., is director of the HHS Office on Disability. Dr. Giannini serves as advisor to the Secretary on HHS activities relating to disabilities. She is also a member of the Institute of Medicine of the National Academy of Sciences and fellow of the American Academy of Pediatrics.

Gail Houle, is associate division director of the Research-to-Practice Division, Early Childhood Programs, Office of Special Education Programs, Department of Education where she oversees programs for children with disabilities and their families funded through the Individual with Disabilities Education Act. Her expertise focuses on services for children with autism spectrum disorders.

Larke Huang is senior advisor on children and a licensed clinical-community psychologist who provides leadership on federal national policy pertaining to mental health and substance use issues for children, adolescents and families for the Substance Abuse and Mental Health Services Administration.

Thomas Insel, M.D., is director of the National Institute of Mental Health at NIH. The Institute's mission is to reduce the burden of mental illness and behavioral disorders through research on mind, brain, and behavior.

Story Landis is director of the National Institute of Neurological Disorders and Stroke at NIH. The Institute's focus is directed toward reducing the burden of neurological disease through research on the normal and diseased nervous system.

Cindy Lawler is scientific program director of the Cellular, Organs, and Systems Pathobiology Branch, Division of Extramural Research and Training, National Institute of Environmental Health Sciences at NIH. The Branch plans, directs, and evaluates the Institute's grant program that supports research and research training in environmental health.

Patricia Morrissey is commissioner of the Administration on Developmental Disabilities at the Administration for Children and Families, which seeks to improve services to and assure that individuals with developmental disabilities have opportunities to make their own choices, contribute to society, have supports to live independently, and are free of abuse, neglect, financial and sexual exploitation, and violations of their legal and human rights.

Edwin Trevathan, M.D., is director of the National Center on Birth Defects and Developmental Disabilities (NCBDDD) at CDC. NCBDDD is focused on identifying the causes of and preventing birth defects and developmental disabilities, helping children to develop and reach their full potential, and promoting health and well-being among people of all ages with disabilities. Dr. Trevathan is representing Julie Gerberding, M.D., M.P.H., director of the CDC, on the committee.

Peter van Dyck, M.D., M.P.H., is associate administrator of Maternal and Child Health at the Health Resources and Services Administration (HRSA). Dr. van Dyck oversees HRSA's Maternal and Child Health Bureau, which seeks to improve the health of mothers, children, and families, particularly those who are poor or lack access to care.

Elias Zerhouni, M.D., is director of the National Institutes of Health. A world renowned leader in the field of radiology and medicine, Dr. Zerhouni has spent his career providing clinical, scientific, and administrative leadership. He leads the nation's medical research agency and oversees the NIH's 27 Institutes and Centers with more than 18,000 employees.

Notes on This Panel from the Combating Autism Act

The law calls for the committee to meet at least twice a year, in public. Here's what the law says about its goals:

In carrying out its duties under this section, the Committee shall—

(1) develop and annually update a summary of advances in autism spectrum disorder research related to causes, prevention, treatment, early screening, diagnosis or rule out, intervention, and access to services and supports for individuals with autism spectrum disorder;

(2) monitor Federal activities with respect to autism spectrum disorder;

(3) make recommendations to the Secretary regarding any appropriate changes to such activities, including recommendations to the Director of NIH with respect to the strategic plan developed under paragraph (5);

(4) make recommendations to the Secretary regarding public participation in decisions relating to autism spectrum disorder;

(5) develop and annually update a strategic plan for the conduct of, and support for, autism spectrum disorder research, including proposed budgetary requirements; and

(6) submit to the Congress such strategic plan and any updates to such plan.

Related Stories on Autism Bulletin:

CDC Director Cites Autism as Urgent Concern

Bush Signs Combating Autism Act

National Institutes of Health Reorganizes Autism Research Program

Federal Research Grants Shows Intensified Effort to Find Autism Clues, Treatments, NIH Says

Autism Issue Makes Ripple in Presidential Race As Clinton Promises to Spend $700 Million Per Year

Sen. Hillary Clinton of New York, a front-runner in the race for the Democratic presidential nomination, last week issued a plan to help children and families affected by autism. The plan calls for spending $700 million per year to expand research, identify treatments, expand access to services for children and adults with autism spectrum disorders and provide autism-specific training for teachers.

While some other candidates do address autism in their campaign literature and remarks (read on below), Clinton's proposal is the most detailed of any of the major presidential candidates I could find, and follows her filing a bill in March 2007 with Republican Senator Wayne Allard of Colorado to increase access to support services for Americans with autism. (See "Senators Clinton and Allard Unveil Proposal to Expand Autism Services," in the Autism Bulletin archives.)

You can read a press release about Clinton's plan here. Both the Clinton-Allard bill and this plan—issued during this white-hot period leading up to the Iowa causes and New Hampshire primary in early January—include similar ideas around the same broad themes: expanding access to autism services for people who need them, from children to adults; spending more to understand what happens when someone has autism and why diagnoses are on the rise; generating more consensus around evidence-based effective treatments for autism.

Notably, Clinton calls for providing grants to states to increase programs and services for adults.

What Other Candidates Are Saying About Autism

A number of candidates who serve in Congress have records on autism that relate to the landmark 2006 passage of the Combating Autism Act, which received broad support. In fact, Sen. Christopher Dodd, a Connecticut Democrat, was the co-sponsor of the Senate version of the bill. You can read more about his work on that law here and see more coverage of that landmark law here.

Dodd and other Democratic candidates including John Edwards, the former North Carolina Senator and vice presidential candidate; Sen. Barack Obama, Democrat of Illinois, and New Mexico Gov. Bill Richardson, include their ideas about helping people with autism in their health care reform plans. Some quotes follow:

From the John Edwards campaign blog, Nov. 26:

We need to find the causes so we can help protect our children. The National Institutes of Health have concluded that childhood vaccines are not the cause, but many families are not convinced. As president, I will double funding for autism research, issue an all-hands-on deck challenge and follow the results wherever the science takes us.

We also need to take better care of children affected today. My plan for universal health care, guaranteed coverage of autism care in Medicaid and private insurance, and better investments in special education and home health workers will assist families to support and treat children with autism and help children, and adults, reach their full potential.

We should also invest more in recruiting, training and paying sufficiently teachers, therapists, psychologists and others working in the special education field. It's time to finally get on a path to fully funding special education.

From the Barack Obama campaign's health care plan:

Support Americans with Autism. More than one million Americans have autism, a complex neurobiological condition that has a range of impacts on thinking, feeling, language, and the ability to relate to others. As diagnostic criteria broaden and awareness increases, more cases of autism have been recognized across the country. Barack Obama believes that we can do more to help autistic Americans and their families understand and live with autism. He has been a strong supporter of more than $1 billion in federal funding for autism research on the root causes and treatments, and he believes that we should increase funding for the Individuals with Disabilities Education Act to truly ensure that no child is left behind.

More than anything, autism remains a profound mystery with a broad spectrum of effects on autistic individuals, their families, loved ones, the community, and education and health care systems. Obama believes that the government and our communities should work together to provide a helping hand to autistic individuals and their families.

From Bill Richardson's health care proposal:

First of all I am for strongly increased research on autism. The number of children in this country affected by autism is just staggering. [1 in every 150 children] Comprehensive and universal access to health care is part of the solution. I fought for increased funding in New Mexico for outreach, education, treatment and awareness. This is something that I have been talking about on the campaign trail everyday and it will be a priority in my administration.

From Christopher Dodd's health care plan:

Under the Dodd Plan, every child in America will have guaranteed health insurance equivalent to the health coverage Members of Congress have for their children. All children will have access to preventive health screenings including vision, hearing, autism, and other neurological disorders.

Where Are The Republicans?

I researched the online campaign literature and recent press coverage for Mike Huckabee, the former Arkansas governor; Sen. John McCain of Arizona, Rep. Ron Paul of Texas, and former Massachusetts Gov. Mitt Romney. With the exception of a haircut fundraiser that Huckabee attended for autism in New Hampshire, and a Romney campaign volunteer in Colorado who has done some charity work for autism, I couldn't find a mention of autism anywhere.

That doesn't mean it's not there, so if you know of someone in any of these campaigns, write to me or submit a comment at the end of this post. It could just mean that autism hasn't risen to any level of importance in the Republican race. Health care is present, though. Mitt Romney is running on his bringing health coverage to all in Massachusetts. Ron Paul is a doctor. In the past, Mike Huckabee has been on a mission to make citizens lose weight.

Noted: I couldn't find anything on the websites of two other Democrats, Sen. Joe Biden of Delaware and Rep. Dennis Kucinich of Ohio.

Haircut Footnote

Four candidates have taken up a "$400 haircut challenge" for charity, from the father of an autistic child in New Hampshire. Here's an item from the Autism Society of America's website:

Representative Dennis Kucinich made a campaign stop for autism on November 20. The presidential candidate, a democrat from Ohio, was the third politician to take up New Hampshire hair stylist David Holden on his challenge to get a $400 haircut with all proceeds going to ASA.

Though the challenge was inspired by candidate John Edwards’ high-end haircuts that appeared on campaign statements in April, Holden said the challenge isn’t meant as a dig just an opportunity to help a good cause. Holden is the owner of Hair Biz salon in Concord, and the father of a 12-year-old with autism.

Kucinich is the third to take up the challenge. Representative Tom Tancredo of Colorado and former Arkansas governor Mike Huckabee have also participated.

Also see:

Bush Vetoes Domestic Spending Bill That Includes Autism Research, Education Funds

Bush Vetoes Domestic Spending Bill That Includes Autism Research, Education Funds

President Bush today vetoed a bill that autism advocates say would have increased funding for autism research, data collection on autism diagnosis studies, and provided more awareness and training for professionals working with autistic students. Some autism advocates are calling on Congress to override the president's veto.

The money involved—$1 million at the National Institutes of Health for research, $16.5 million at the Centers for Disease Control for the population studies, and another $37 million for awareness programs—is a relative pittance when compared with the billions of dollars in disagreements you're about to read in the quotes from government leaders that follow. It demonstrates how difficult it can be to get federal funds appropriated for a cause that just a year ago enjoyed wide bipartisan support, when Bush signed the Combating Autism Act into law.

These autism-related items are part of a much larger spending bill that also pertains to education, health and anti-poverty programs.

Partisan Bickering—and the Iraq War

Bush issued a statement saying the domestic spending proposal from Congress, called the Labor, Health and Human Services and Education Conference Report, costs too much and contains too many "earmarks," spending provisions for projects in local Congressional districts. The president's statement said: "This year, the Congress plans to overspend my budget by $22 billion, of which $10 billion is for increases in this bill. Health care, education, job training, and other goals can be achieved without this excessive spending if the Congress sets priorities."

Leaders of the appropriations committees in the House and Senate, both Democrats, sought to point out the relative low cost of the programs designed to make Americans' lives better, compared with the mounting cost of the Iraq war and Bush's tax policies.

Rep. David Obey, D-Wisconsin, chairman of the House budget panel, issued this statement:

“The same President who is asking us to spend another $200 billion on the misguided war in Iraq and is insisting on providing $60 billion in tax cuts next year to folks who make over a million bucks a year, is now pretending to protect the deficit by refusing to provide a $6 billion increase to crucial domestic investments in education, healthcare, medical research and worker protections that will make this country stronger."

Senator Robert Byrd, D-W. Virginia, chairman of the Senate appropriations committee, issued a similar statement, urging the White House to return to negotiating with Congress on the budget.

Autism Society Calls for Veto Override

Since the Bush White House has not developed a reputation for negotiating with Congress, it is not surprising that advocates at the Autism Society of America are urging its membership to contact their representatives in Congress to override the president's veto.

Here's an excerpt from the argument the society is encouraging autism advocates make to their members of Congress urging them to override the president's veto:

This important legislation would provide significant increases for autism research, public awareness, early intervention and education. Specifically, the measure calls for:

* A 3.1 percent increase in research at the National Institutes of Health, a portion of which can be used to expand, intensify and coordinate research into the causes, diagnosis, early detection, prevention, services, supports, intervention and treatment of autism spectrum disorders. This includes $1 million to reinstitute the Inter-Agency Autism Coordinating Committee.

* $16.5 million for the CDC's Disabilities Surveillance and Research Program, which supports data collection, analysis and reporting, so that we can better understand the scope of the autism epidemic.

* $37 million to increase awareness, reduce barriers to screening and diagnosis, promote evidence-based interventions for individuals with autism and train professionals to utilize valid and reliable screening tools to diagnose autism and provide evidence-based interventions for children with autism and other developmental disabilities.

These important increases will ensure that research into improved treatments and interventions can be explored, and that children with autism are diagnosed earlier, can access early intervention services, and are able to receive a quality education.

President Bush's veto seriously endangers our ability to diagnose, treat and serve individuals with autism and their families.

British Researchers Unveil Brain Imaging Center Devoted to Autism Studies

Researchers at the Oxford University Department of Psychiatry announced the opening of a special imaging center to study the brains of both children and adults with autism spectrum disorders. The university is calling the Oxford Neurodevelopmental Magneto-
encephalography Centre the world's first brain imaging facility devoted to studying autism. It is located at the Warneford Hospital in Headington, England, about 56 miles west of London.

The magnetoencephalography technology, using a machine like the one pictured above, allows researchers to create a "window on the brain" of its subjects, allowing scientists to watch brain activity as it changes from moment to moment, of an individual subject while they sit upright and perform tasks.

The Oxford Mail newspaper reported the center's opening on October 12, complete with a ceremonial visit by Princess Anne, daughter of Queen Elizabeth II.

The brain scanning equipment costs 2.3 million British pounds, about $4.7 million at today's exchange rate. A Swedish medical equipment maker called Elekta makes this machine. (Note to e-mail subscribers: you can also see a photo of the machine here.)

This project fits into a broader effort to understand brain anatomy and genetic components of autism spectrum disorders, one of several themes of autism research ongoing around the world. Other notable research efforts are underway to examine potential environmental factors in the incidence of autism. You can read about past coverage of these and other notable research studies by going to Autism Bulletin's archives for articles labeled "research," or by clicking here.

Oxford unveiled plans for the brain imaging center in January. The university's press release emphasizes the need to make subjects comfortable while researchers monitor their brain activities. One look at the machine's large apparatus shows this could be a challenge with young children; notably, the Oxford facility is supposed to look less imposing. More from the press release:

The scanner will help Oxford University's autism research group, led by Professor Anthony Bailey, to understand the brain basis of autism. It will also be a resource for researchers from all over the UK.

MEG (Magnetoencephalographic) scanners provide a 'window on the brain': they allow doctors and researchers to view brain activity whilst a particular task is performed, showing both where and when different parts of the brain are active. The scanner measures the tiny magnetic fields generated by brain activity.

'MEG is ideal for studying autism,' says Professor Bailey. 'The scanner is silent and safe, children and adults can sit upright, and researchers are able to sit next to them, making it a stress-free experience. Imaging the brain allows us to compare the brain activity of someone with autism to that of someone without autism.'

MEG scanners allow the patient or subject to sit upright and unenclosed. MEG scanning also provides millisecond time resolution: in other words, it shows how brain activity is changing from one moment to the next.

Until now, Professor Bailey's team has traveled to Finland to measure brain activity, either taking with them adults with autism from the UK, or studying affected Finnish children. 'The new centre in Oxford will transform our research into the brain basis of autism,' he says. 'It will also be a resource for other autism researchers.'

Professor Bailey and his team's MEG research in Finland has already shown that human faces are processed in a quite different way in children and adults with autism. 'The next step is to understand why there is this difference in processing and how it changes with development,' he says. 'Ultimately we aim to develop more effective treatments.'

The £2.3m MEG Centre has been designed as a relaxing environment for children with autism, with plenty of exposed wood, natural light and open space. It contains a 'practice' scanner which allows children to get used to the process without using up valuable time on the active scanner.

Studies using the MEG scanner will form one part of the work carried out by the autism research group. The team leads an international study to identify autism susceptibility genes; uses several imaging techniques to understand the brain basis of autism; and is investigating how computer-generated worlds can be used to develop social skills. The team is currently looking for children and adults with autism to take part in their studies. Individuals and families interested in learning more about, or helping with, research by the group can contact them on autism.research@psych.ox.ac.uk.

Large Children's Health Study Cites Autism as One of Key Target Areas

The National Institutes of Health today announced federal funding for 22 research centers which will collect data and recruit families to participate in a study designed to examine the effects of environmental and genetic factors on children's health. Researchers will be looking to understand how these factors relate to children developing autism, birth defects, heart disease and obesity.

The announcement's citing autism as a key national health issue would appear to reflect the mainstream concern that autism spectrum disorders have become in government research circles.

The National Children's Study will follow a sample of 100,000 children from across the United States from birth to age 21. The study will be "seeking information to prevent and treat some of the nation's most pressing health problems, including autism, birth defects, heart disease and obesity," the NIH said in a statement.

The goal is to create a sample of children that reflects the makeup of the nation's population. A key aspect of the project, based on the statement released today, is to bring staff on board who can recruit people in communities around the country to participate in a government study. Yvonne Maddox, deputy director of the National Institute of Child Health and Human Development, said in today's statement: "Building trusting relationships with community leaders will be critical to the success of the study's recruitment efforts," and noted that researchers will work to build relationships with local community groups and health care providers, to explain the potential benefits of the study.

"The National Children's Study is poised to identify the early antecedents of a broad array of diseases that affect both children and adults. Such insights will lead to the means to successfully treat and even prevent conditions that to date have defied our best efforts," Dr. Elias A. Zerhouni, the NIH director, said in a statement.

Congress set aside $69 million for the project this year. The research study is adding 22 new study centers to an existing base of seven research centers set up in 2005. In addition, the NIH unveiled a list of 105 study locations in 2004.

The 22 locations announced include:

1. Providence County, Rhode Island: Brown University with National Opinion Research Center and Women and Infants Hospital .
2. Schuylkill County, Pennsylvania and New Castle County, Delaware: Children’s Hospital of Philadelphia with Drexel University, Philadelphia Health Management Corporation, University of Pennsylvania, Pennsylvania State University, Schuylkill County Commissioners, Pottsville Hospital/Warne Clinic, University of Delaware Christiana Care, and A.I. DuPont Institute Hospital for Children.
3. DeKalb County, Georgia and Fayette County, Georgia: Emory University with Morehouse School of Medicine and Battelle Memorial Institute.
4. Baltimore County, Maryland: Johns Hopkins University with Drexel University, Battelle Memorial Institute, and Children’s National Medical Center.
5. Wayne County, Michigan: Michigan State University with Henry Ford Health System, University of Michigan, Wayne State University, and Michigan Department of Community Health.
6. Nassau County, New York: Mount Sinai School of Medicine with Columbia University College of Physicians and Surgeons and School of Public Health, University of Medicine and Dentistry of New Jersey, Environmental and Occupational Health Sciences Institute, and Battelle Memorial Institute.
7. Cook County, Illinois: Northwestern University with University of Chicago, University of Illinois at Chicago, National Opinion Research Center, and Children’s Memorial Hospital.
8. Macoupin County, Illinois and St. Louis, Missouri: St. Louis University with Southern Illinois University (Schools of Medicine, Dentistry, and Nursing), Washington University School of Medicine, and local office of Battelle Memorial Institute.
9. Sacramento County, California: University of California, Davis with Sacramento Department of Health and Human Services and Battelle Memorial Institute.
10. San Diego County, California: University of California, Irvine with San Diego State University; University of California, San Diego; California State University, San Bernardino; Loma Linda University, and California State University, Bakersfield.
11. Honolulu County, Hawaii: University of Hawai'i at Manoa with Kaiser Permanente; Johns Hopkins University; and University of California, Irvine.
12. Worcester County, Massachusetts: University of Massachusetts with Clark University, National Opinion Research Center, and Harvard University.
13. Ramsey County, Minnesota: University of Minnesota with National Opinion Research Center, Health Partners Research Foundation, and St. Paul-Ramsey County Department of Health.
14. Hinds County, Mississippi: University of Mississippi with Tougaloo College, Jackson State University, Mississippi Department of Health, and Community Outreach for Health Awareness.
15. Valencia County, New Mexico: University of New Mexico.
16. Rockingham County, North Carolina: University of North Carolina at Chapel Hill with Duke University, Battelle Memorial Institute, and McMillan and Moss Research.
17. Marion County, West Virginia and Westmoreland County, Pennsylvania: University of Pittsburgh with National Opinion Research Center, Pennsylvania State University, and University of West Virginia.
18. Bexar County, Texas: University of Texas Health Science Center at San Antonio.
19. Cache County, Utah: University of Utah with Utah State University.
20. Los Angeles County, California: University of California, Los Angeles with RTI International; Cedars Sinai Medical Center; and University of Southern California.
21. King County, Washington: University of Washington with Fred Hutchinson Cancer Research Center and Seattle/King County Public Health Department.
22. New Haven County, Connecticut: Yale University.

Also see:

Study of Social and Environmental Factors in Autism Subject of High-Profile NIH Grant

Federal Research Grants Show Intensified Effort to Find Autism Clues, Treatments, NIH Says

Medical Journal Traces Vaccine Controversy to Moment When Doctors Failed to Communicate Clearly About Risks

The New England Journal of Medicine published an editorial in its September 27 issue that provides useful background information on the ongoing controversy over a mercury-containing vaccine preservative called thimerosal and whether it causes autism in vaccinated children. The piece is worth reading because it asserts that a botched effort by the American Academy of Pediatrics to assure the public that vaccines are safe has led to the problems we face now: a reduction in the number of children immunized, a distrust in scientists, and lengthy court battles.

The article leads a reader to conclude that no matter how many scientific studies fail to find a causal link between thimerosal to neurological disorders (and The New England Journal publishes the latest study in the same issue), the scientific and medical establishment will continue to face questions, criticisms and doubts on this issue.

In "Thimerosal and Vaccines—A Cautionary Tale," Dr. Paul A. Offit, chief of the Division of Infectious Diseases at Children's Hospital of Philadelphia, notes that the public took little notice of an amendment in the November 1997 bill reauthorizing the Food and Drug Administration, which required the FDA to "compile a list of drugs and foods that contain intentionally introduced mercury compounds and [to] provide a quantitative and qualitative analysis of the mercury compounds in the list." Offit explains:

Eighteen months later, in May 1999, the FDA found that by 6 months of age, infants could receive as much as 75 µg of mercury from three doses of the diphtheria–tetanus–pertussis vaccine, 75 µg from three doses of the Haemophilus influenzae type b vaccine, and 37.5 µg from three doses of the hepatitis B vaccine — a total of 187.5 µg of mercury. The use of mercury in vaccines wasn't new; thimerosal, an ethylmercury-containing preservative, had been used to prevent bacterial contamination since the 1930s.

To determine whether the amount of mercury in vaccines was safe, FDA scientists examined safety guidelines from three sources: their own agency, the Environmental Protection Agency, and the Agency for Toxic Substances and Disease Registry. They found safety guidelines for methylmercury (environmental mercury), but not for ethylmercury (thimerosal). Although these two molecules differ by only one carbon atom, the difference isn't trivial. Ethylmercury is excreted from the body much more quickly than methylmercury and is therefore much less likely to accumulate. For this reason, the safety guidelines that had been established for methylmercury weren't likely to be predictive of the safety of ethylmercury.

In mid-June 1999, FDA scientists held a meeting to discuss their findings. Present were representatives from the Centers for Disease Control and Prevention (CDC) and the American Academy of Pediatrics (AAP) — the organizations that are principally responsible for making vaccine recommendations for U.S. children. Several attendees left the meeting concerned that infants might be receiving too much mercury from vaccines. Although they were largely reassured by studies of children who had ingested large quantities of mercury from fish in their diet, they couldn't find a single study that compared neurologic outcomes in children who had received thimerosal-containing vaccines with those in children who had not.

On July 9, 1999, after much wrangling, the CDC and AAP decided to exercise the precautionary principle. They asked pharmaceutical companies to remove thimerosal from vaccines as quickly as possible; in the interim, they asked doctors to delay the birth dose of hepatitis B vaccine in children who weren't at risk for hepatitis. A press release issued by the AAP revealed the ambivalence among its members: "Parents should not worry about the safety of vaccines," it read. "The current levels of thimerosal will not hurt children, but reducing those levels will make safe vaccines even safer. While our current immunization strategies are safe, we have an opportunity to increase the margin of safety." Critics wondered how removing something that hadn't been found to be unsafe could make vaccines safer. But many parents, frightened by a sudden change in policy, reasoned that thimerosal was targeted because it was harmful — and their faith in the vaccine infrastructure was shaken. Doctors were also confused by the recommendation.

So what does all this mean? It suggests that doctors who were in a position to give advice about the safety of vaccines faced a moment when they had to try to communicate to the public both their vigilance on the matter of mercury contained in the vaccine preservatives and to express reassurance about the safety of an essential public health vaccination program. In retrospect, it reads like a very difficult challenge to communicate both ideas at the same time.

And, Offit notes, the pediatricians made a difficult situation worse with their ambivalent words. "The thimerosal controversy should stand as a cautionary tale of how not to communicate theoretical risks to the public; otherwise, the lesson inherent in the collateral damage caused by [thimerosal's] precipitous removal will remain unlearned."

Even if you disagree with Offit's characterization that removing thimerosal from vaccines is precipitous, it's likely that you can understand why vaccines are an issue fraught with emotion and tension for the autism community searching for answers, understanding and causes for their loved one's condition.

Policy makers and the research establishment seem to understand this, too. And so the medical community continues researching the issue. You can read the abstract to the latest study, by William W. Thompson Ph.D. and 17 other researchers with CDC backing publishing a study in the same issue of The Journal titled, "Early Thimerosal Exposure and Neuropsychological Outcomes at 7 to 10 Years" which looked at 1,047 kids and found 42 with neuropsychological conditions (without assessing whether any had autism spectrum disorders). It concludes: "Our study does not support a causal association between early exposure to mercury from thimerosal-containing vaccines and immune globulins and deficits in neuropsychological functioning at the age of 7 to 10 years."

This result echoes some other studies, but the trouble is that trust is hard for some advocates to find. And the voices of parents who distrust the research establishment don't hesitate to launch critiques. Cindy Waeltermann, director of AutismLink.com, an advocacy group which has opened an autism services center in Pittsburgh, criticized the researchers for not assessing whether the 42 kids with abnormalities detected had autism, and added:

The study assessed ONLY those children who were exposed to mercury during the first 28 days to 7 months of life. The autism community has always asserted that autism is caused by a build up of mercury in the system as a result of multiple vaccinations over the first two years of life. This study did not address this hypothesis. ... The CDC, which is supposed to be the quintessential research organization of modern times has once again proven its fallibility.... This study was geared to a particular outcome before it even began.

Also see:

Vaccine Court Starts Hearing Autism Case

Scientists Raise Voices Against Autism Parents' Vaccinophobia