Obama Unveils Disabilities Plan, Includes Autism in Agenda; Other Notes for Super Tuesday Primaries

Sen. Barack Obama's presidential campaign on January 29 held a teleconference to highlight the Illinois democrat's agenda for Americans with disabilities. You can find more information here, including a short video from Obama in which he specifically cites the need to screen children around age 2 for autism.

You can find Obama's nine-page position paper on helping Americans with disabilities is on his website here.

Obama's platform on disabilities integrates autism supports into overall plans to provide universal healthcare coverage for, better educational services through full funding for the Individuals with Disabilities Education Act. It also includes incentives for employers to hire people with disabilities and plans to support community-based residential options for people who can't live on their own. Interestingly, it includes an explicit pledge to appoint federal judges who are sensitive to the needs of disabled citizens.

Near the end of the position paper, at the bottom of page 8, comes this statement about autism:

Supporting Americans Living with Autism Spectrum Disorders: More than one million Americans live with an autism spectrum disorder (ASD), 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 ASD have been recognized across the country. Barack Obama believes we need to research treatments and search for the causes of ASD. He has been a strong supporter of more than $1 billion in federal funding for ASD research on the root causes and treatments. Obama believes we must work to guarantee that Americans with ASD can live independent and fully productive lives and to assure that their families understand and are able to support a loved one with ASD. Obama will fully fund the Individuals with Disabilities Education Act to ensure that no child with ASD or any other disability is left behind. Obama will also fight to assure that the government and our communities work together to provide a helping hand to people with ASD and their families.

Obama has a long record supporting people with ASD. In the state senate, Obama sponsored legislation that became law to create the ASD Program - a systems development initiative designed to promote the implementation of evidence-based practices. And in the U.S. Senate, Obama is also a cosponsor of a measure that would expand federal funding for life-long services for people with ASD, authorizing approximately $350 million in new federal funding for key programs related to treatments, interventions and services for both children and adults with ASD.

As the field of presidential candidates shrinks—Democrat John Edwards and Republican Rudy Giuliani bowed out this week—it's notable that the two major Democrats left in the race, Sen. Hillary Clinton, and Obama, each have issued important pledges of support for people with autism. More coverage on Clinton's autism advocacy is below.

I have been looking for coverage or position papers by Republican candidates related to autism, but have failed to see anything from the campaigns of Mitt Romney, Mike Huckabee or Ron Paul. The group A-Champ (Advocates for Children Affected by Mercury Poisoning) has issued a statement hailing Sen. John McCain of Arizona for requesting a Senate hearing on autism including the issue of mercury in vaccines.

If you know more about where the Republican stand on this issue, please post a comment here.

Autism support is an issue for parents and family members of people with autism to think about when they vote for president, according to a poll posted here on December 17. More than half of those who participated in the survey identified autism services as the most important issue influencing their vote—ahead of the Iraq war, the economy, and education. It's a small, self-selected sample, but interesting for what it's worth.

Also see:

• Where Do Autism Services Fit Into Your Views on the Presidential Race?

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

• Autism Bulletin's 2007 Advocates of the Year

Which Autism Parent Blogs Do You Like?

When I told a colleague of mine that there are many parents of children with autism spectrum disorders who discuss their experiences in blog posts, she asked me to compile a list.

I have some in mind, but am looking for more. So I am asking Autism Bulletin readers for your suggestions. Please answer this question:

Which blogs by parents who describe their experiences raising children with autism do you find helpful? Why?

Please also share the website address of any blogs you choose. You can post your suggestions by adding a comment to the end of this post, or you can send me an e-mail message at michaelsgoldberg AT yahoo DOT com. I will share the list I compile in a later post.

Understanding Autism Spectrum Disorders

BabyZone.com, a website for expectant and new parents, has published an article I wrote entitled, "Understanding Autism Spectrum Disorders." You can find it by clicking on the link here.

This article is a primer for people such as parents and grandparents who are just learning about autism and who may not know much about the diagnostic criteria doctors and other child development specialists use to tell if a toddler has an autism spectrum disorder. It lays out the criteria for the different places on the autism spectrum while pointing out how difficult this whole process can be for parents:

It's common to hear autism experts say that no two children who receive the diagnosis are exactly alike. One person with autism may not be able to talk, while another will talk a great deal, nonstop, about subjects that interest him intensely. Some people with autism display very high levels of intelligence, while others may have mental retardation.

This lack of black-and-white clarity can be frustrating for parents and family members new to autism who seek to understand what's going on with their very young child and try to assess how this diagnosis will influence not just their child, but everyone in the family.

The article includes one important piece of new information: the American Psychiatric Association, the body that publishes the Diagnostic and Statistical Manual of Mental Disorders which defines autism, plans to update its published definitions in 2011, according to Autism Speaks and this tentative timeline from the association itself. That will be version 5, or DSM-V.

Other links that Autism Bulletin readers may find interesting:

• A preview version of the DSM-IV-TR (version 4, text revision), is available online via Google Books Search website, with some pages missing. Click here.

• The American Academy of Pediatrics paper, "Identification and Evaluation of Children With Autism Spectrum Disorders" in the journal Pediatrics, November 2007

• The Centers for Disease Control autism site

• The National Institute of Mental Health autism spectrum topic page

• The M.I.N.D. Institute at the University of California at Davis, a leading research site for early diagnosis of autism

• Unstrange Minds: Remapping the World of Autism (Basic Books, 2007) by Roy Richard Grinker, an anthropologist and father of a daughter with autism who writes an interesting discussion of Leo Kanner's work. Kanner was among the first doctors to document autistic traits in his patients.

• An interactive timeline charting the history of autism, by Jane Lytel

Also see:

What to Do When Your Child Gets an Autism Diagnosis

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

One More Resolution to Make This Year: Attend an Autism Educational Event

Getting through each day can be challenge enough for parents of children with autism spectrum disorders.

There's the schedule of activities, services to track. For many, there are also a child's behaviors to manage, whether that means avoiding a tantrum, redirecting stereotypical behaviors (such as hand-flapping) or encouraging positive behaviors on a community outing. There are jobs to do at work, bills to pay, other family members who need attention. And sleep is a good idea.

So why suggest attending an autism event? Isn't there enough to do?

Yes there is. But the benefits of getting out of the house and attending a lecture, movie, or other informational gathering are potentially important. Learning more about autism spectrum disorders in general, about approaches to helping people with autism, about the history of autism, about advocacy efforts—all of these activities allow you to understand more about what's going on with efforts to help people with autism while making you feel less alone when facing the daily challenge.

Where to Find Information About Autism Educational Events

You can start finding information about events by checking with other parents about lectures or other events they may have attended. Some events cost money to attend, but many events are free and I would recommend you start by attending a free event. Other places to look include:

* Local chapters of advocacy organizations like the Autism Society of America (which holds an annual convention with many lectures and presentations) and Autism Speaks. There are often other groups in major metropolitan areas besides these two big ones, so ask other parents.

* Universities with medical schools and scientific researchers who are doing research studies on autism.

* Professional organizations such as the Association for Behavior Analysis International, which holds regular meetings in the United States and other countries and attracts top researchers and educators to give presentations. While educators dominate the attendee list, I was among the klatch of parents who attended the 2007 conference in Boston and it was very useful. There is a big conference in Atlanta coming up Feb. 8 to 10, 2008.

* Schools that specialize in helping students with autism. The New England Center for Children, located outside Boston, this year is starting a series of informational sessions for parents. Topics include: transition planning for adult placement (Jan. 16), trends in autism research (Feb. 12), strategies for managing challenging behavior (March 12), feeding problems and solutions (April 15) and toilet training strategies (June 18). These lectures take place from 7 to 9 p.m., at the school in Southborough, Mass., and cost $30 for one person and $50 for two. Click on the school link above for more information.

* Local school districts may have a special education parents group that organizes free lectures and presentations. Contact your school district's special education office to see if they do.

* Trade associations that organize educational and marketing events also can be useful places for parents to learn what's going on. There is a conference Jan. 8 and 9 in Washington, D.C. for first responders to learn about helping people with disabilities during an emergency situation. You can read more about the "Disability and Special Needs Technical Assistance Conference" by clicking here.

Another example of a trade association is the American School Health Association conference. At last year's event, they had exhibits on technologies that help with communications challenges.

* The web has resources available, too. The online bulletin board assembled by The Schafer Autism Report which you can find here.

These are some examples. You may have more to offer. If anyone knows of other online bulletin boards or constantly updated events calenders, please post a comment at the end of this post or e-mail me at michaelsgoldberg AT yahoo DOT com.

Also see:

Why Families with an Autistic Child Need to Celebrate Mother's Day Frequently

What to Do When Your Child Gets an Autism Diagnosis

BabyZone.com, a website site for parents of very young children, has published an article I wrote to help parents new to autism spectrum disorders understand what the diagnosis is about and what first steps to take. You can find the article here:

What to Do When Your Child Gets an Autism Diagnosis.

Take a look. While regular readers of Autism Bulletin and veteran parents of people with autism probably won't find any surprises, I would hope this article will help not just parents new to the subject but also grandparents, other relatives and friends.

Related Subject: Where Do Parents Find Support?

On a related subject, for a future Autism Bulletin article: I am very interested in sharing information about ways for parents and other family members find support for each other as they work to help their children with autism spectrum disorders. If you have suggestions for finding that support, please post a comment, or drop me a line at michaelsgoldberg AT yahoo DOT com.