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.

"Combating Autism Act" Funding Caught in Legislative Wrangling; Bush Veto of Research, Awareness Dollars Possible

Millions of dollars in federal funding for scientific research into autism spectrum disorders and for public awareness campaigns is caught up in an ongoing budget battle between Congress and President George W. Bush, who has threatened to veto the spending bill in which these autism provisions are included.

That's the news in an important legislative update provided by the Autism Society of America, a major autism advocacy group based near Washington D.C. You can read a copy of the update at the society's website by clicking here.

The big picture here is that President Bush has decided, in the last part of his second term, to hold the line on domestic spending programs. A November 6 press release from Rep. David Obey, the Wisconsin Democrat who chairs the House Appropriations Committee, outlines how the Bush Administration and the Democrats in the House view a series of labor, health and education issues. Not surprisingly, the Iraq war plays into the politics of the situation. This is the way the introduction reads on Obey's press release:

WASHINGTON - Even as the President is asking for nearly $200 billion to cover the $10 billion a month we are spending in Iraq (paid for with borrowed money), he is trying to masquerade as fiscally responsible by manufacturing a fight over what we spend in roughly 2 months in Iraq ($22 billion) in investments that will make this a stronger and better country.
At the center of that fight is funding for the Departments of Labor, Health and Education. The conference report considered in the House today provides $150.7 billion, $6.2 billion (4.3%) above 2007 and $9.8 billion above the President’s request (roughly the cost of 1 month in Iraq) for the Departments of Labor, Health and Human Services and Education.
What would that $9.8 billion achieve? Here are some specific examples.

Obey's statement goes on to outline the differences between the White House and the majority in Congress on issues including health care, job training, education, poverty programs and medical research. Obey notes that the House wants to spend more money on all of these programs and Bush wants to cut them, including special education funding under the Individuals with Disabilities Education Act (IDEA).

It is the medical research section that the Autism Society says advocates for people with autism should watch closely. The bill for Labor, Health and Human Services spending "provides $37 million for autism public awareness and early intervention—a $17 million increase over last year, as mandated by the Combating Autism Act of 2006," the Autism Society notes, and adds:

The bill also appropriates $16.5 million for the Centers for Disease Control and Prevention to use toward surveillance and research and $1 million to reinstate the Inter-Agency Autism Coordinating Committee, which would develop a strategic plan for autism research at the National Institutes of Health.

President Bush has vowed to veto the bill because it asks for $9.8 billion more than his budget proposal. Unfortunately, there is not a veto-proof majority in either chamber, so additional negotiations will be needed.

This would be one of those times when it pays to be an engaged citizen. It would be worthwhile to educate yourself about where your House member and Senator stand on this funding bill. Because of Bush's staunch veto threat, it would be especially interesting to go through this effort if you have Republican representation in Congress, because those are the votes in the House and Senate which would be tougher to get if a veto override vote becomes necessary. Let's hope it doesn't.

Also see:

* Bush Signs Combating Autism Act

* More Autism Bulletin stories relating to Congress

A Cogent Case for Precise Autism Population Studies

Newsday, the Long Island, New York-based newspaper, today published an editorial that outlines in clear and pragmatic terms the urgency for Long Island to develop an accurate count of how many people have autism spectrum disorders. The argument focuses on the Long Island region, but the reasoning applies to the United States as a whole. The key reason: we need to know the extent of the challenge facing us, so we can figure out what to do and how to pay for it. The editorial which you can read by clicking here states, in part:

Causes are hotly debated. Some scientists are focusing on a genetic mutation as a possible cause. Others say that childhood vaccines or environmental toxins may be involved.

Regardless of cause, evidence that a growing number of children are being diagnosed as autistic is everywhere. Agencies on Long Island that provide social, educational and training services for children and adults with autism can't keep up with the growing demand. Residential facilities in Nassau and Suffolk report waiting lists ranging from two to five years.

But the lack of standard reporting requirements for schools or pediatricians means that agencies and schools don't know what they face, even in the immediate future. There is a glaring lack of hard data—actual figures—on the incidence of autism among children and adults in specific regions and communities on Long Island.

Without such information, it's hard to plan for services or to provide funds for them—even though it's apparent that the problem is growing to such an extent that some advocates call autism a major health care crisis with no end in sight.

The Newsday editors are diplomatic; "hard to plan" is an understatement, as parents of children on waiting lists for services now can attest. A lack of options for education, social support services, employment training, housing—just about every aspect of life—makes long-term planning like a steep climb in dry sand for most families.

The editorial, a welcome sign that awareness of the autism challenge is spreading, calls on Congress to appropriate funding for the Combating Autism Act signed into law in December 2006, and also urges the Centers for Disease Control to make more precise autism diagnosis figures available to Long Island. The newspaper suggests the creation of a council that can coordinate services among state, county and local service agencies that aren't doing enough of that now. The piece concludes:

But above all, along with the awareness of autism's manifestations, there needs to be valid information about its prevalence in every region, Long Island among them. Without such basic data, the extent of the problem will remain as puzzling as its causes. That's no way to deal with a disorder that can wreck the lives of so many.

Newsday's editorial follows up on articles by reporter Delthia Ricks. In one of her pieces, Ricks talked to genetics researchers at Cold Springs Harbor Laboratory about what they believe is promising research into the causes of autism spectrum disorders. Read "Researchers: New Understanding of Autism Near," by clicking here.

National Institutes of Health Reorganizes Autism Research Program

The National Institutes of Health (NIH) unveiled a plan August 2 to "intensify its efforts to find the causes of autism and identify new treatments" for autism spectrum disorders (ASD).

The announcement means that the government research agency will consolidate two existing programs into a single research effort called the Autism Centers of Excellence (ACE). The NIH announced a set of grants under this program (see more information below), and said there would be another round of grants awarded in 2008. The announcement does not say how much money the government is awarding through these research grants; I have sent a question to the NIH and will let you know what I learn.

You can read the NIH press release here.

The NIH said the Autism Centers of Excellence will include both research centers designed to "foster collaborations between teams of specialists, who share the same facility so that they can address a particular research problem in depth." And example given: "specialists in brain imaging might collaborate with behavior researchers to determine if a particular behavior is associated with a difference in brain structure. They might also consult with a team of genetics experts to find a hereditary basis for their observations."

The research networks involve researchers at many locations around the nation, all working on a single question. This is valuable, the NIH said, because these many researchers can recruit volunteers around the country to participate in a study.

Data gathered by these research funding recipients will go to the National Database for Autism Research, a web-based application housed at the NIH for autism researchers around the world to share information.

National Institutes of Health Director Dr. Elias Zerhouini said the consolidation of two existing programs -- the Studies to Advance Autism Research and Treatment, and Collaborative Programs of Excellence in Autism -- is "needed to capitalize on the gains made by the NIH research effort in autism."

That makes sense, but Autism Bulletin readers may also recall that during last year's long debate before Congress passed the $945 million Combating Autism Act to boost autism research funding and services, there was a lot of discussion about reforming the way the NIH goes about researching autism and other medical conditions. (Joe Barton of Texas, a key Republican committee chairman at the time, sought to block the bill used his desire to reform NIH as an argument. See past coverage here and here.)

The Grant Recipients

The NIH published a list of six Autism Centers of Exellence grant award recipients. They reflect an interesting variety of research efforts going on around the country. The recipients are below, with information provided by the National Institutes of Health:

— Edwin H. Cook (University of Illinois at Chicago): Researchers at the University of Illinois at Chicago ACE Center will focus on understanding the repetitive behavior seen in ASD. Known as "insistence on sameness," this behavior is a hallmark of ASD. Examples of insistence on sameness consist of wanting to wear the same clothes every day, taking the same route to work or school, or becoming fixated on certain subject matter, such as buildings or cars. Center researchers will focus on genetic factors as well as brain chemicals and brain functions that could account for repetitive behaviors in people with ASD, and test whether genetic differences influence how individuals respond to certain medications intended to reduce the occurrence of these behaviors.

— Eric Courchesne (University of California, San Diego): Researchers at the UCSD ACE Center also will use brain imaging to track brain development in children believed to be at risk for autism spectrum disorders. Unlike other ACE program projects, which will attempt to identify forerunners of ASD in the siblings of children with ASD, the UCSD researchers will study infants who have been referred by their physicians. The physicians will make the referrals on the basis of a checklist of behaviors that are similar to those of older children with ASD. The primary goal of this center is to identify brain or other physical differences that might predispose a child to autism. The UCSD Center will collect some of the first information ever obtained on how the brains of very young children with autism process and respond to information.

— Geraldine Dawson (University of Washington). Researchers at the University of Washington ACE Center will seek to identify genes and other potential factors that may predispose an individual toward ASD, as well as factors that might protect against them. In addition to genes, the researchers will try to determine the risk of ASD by examining communication difficulties, early behaviors, patterns in the sounds babies make, and brain structure and activity patterns. Researchers will also try to determine whether certain types of interactions between the parent and baby can decrease the chances for ASD.

— Nancy J. Minshew (University of Pittsburgh): Researchers at the University of Pittsburgh ACE Center will study how people with ASD learn and understand information. Research shows that the ability to organize information into categories is critical to language development. The Pittsburgh researchers will use brain imaging techniques to study how infants at risk for autism and toddlers diagnosed with the disorder place information into categories. Researchers will also use brain imaging techniques to study which parts of the brain are activated in people with and without ASD when processing information and emotions.

— Joseph Piven (University of North Carolina at Chapel Hill): In hopes of identifying brain differences in children who develop ASD, researchers at this Network of sites operating under the direction of the University of North Carolina will use brain imaging techniques to compile images of the brains of very young infants. Some of these children may go on to develop ASD. Their brain images will be compared to those of other infants, to identify differences between children who develop autism and those who do not. While previous studies have documented the enlarged brains often seen in ASD patients, little is known about the abnormal processes during early brain development in children with ASD. The research could offer new insights that lead to earlier diagnosis of ASD.

— Marian D. Sigman (University of California, Los Angeles): Researchers at the UCLA ACE Center will seek to understand how ASD affects the ability to communicate. The researchers will try to find clues to language-related communications problems by looking at genes, behavior and brain structure and functioning. The researchers also are interested in disorders that affect the mirror neurons. Mirror neurons are brain cells that become active either when a person performs an action or watches the action performed by someone else. When many patients with ASD are asked to imitate behaviors, images of their brains show that their mirror neurons are less active than those of other people. The researchers will try to stimulate the mirror neurons of people with ASD by having them follow a set of instructions to complete a task.

House Bill Calls for Autism Education Task Force

Rep. John Yarmuth, a first-term Kentucky Democrat in Congress, filed a bill that would assign a task force to "identify and disseminate evidence-based educational strategies and promising best practices" for autistic children in kindergarten through grade 12. Filed June 7, the bill is H.R. 2609, entitled "Empowering Children with Autism through Education Act of 2007."

You can read a July 30 press release about the bill here. “The number of children diagnosed with autism is escalating at an alarming rate,” Yarmuth said in his statement. “Yet, our methods of working with these children have failed to adequately address the challenges confronting them. This legislation will lead to solutions that ensure all children get a quality education and realize their vast potential.”

The text of the bill does not identify any particular method of educating children with autism spectrum disorders, apparently leaving that to the task force to identify them. The Education Secretary would be responsible for appointing the task force, and the bill's initial language would assign it to do identify and spread the word about about these educational strategies and best practices. The task force would also report to Congress about:

(1) Learning models, interventions, and services that demonstrate improvements in reading, writing, and math proficiency for individuals with autism.

(2) The cost-effectiveness of these learning models, interventions, and services, and their applicability for local education agencies.

(3) Professional development needs of educators who serve individuals with autism.

(4) Methods for incorporating State-, local- and community-based programs and services into the classroom to provide comprehensive support for individuals with autism.

(5) Identification of barriers to successful implementation of programs and services related to the education of and provision of services to children with autism and recommendations to address those barriers.

(6) Dissemination of findings to Congress, all relevant agencies, and States and United States territories to improve the quality of learning for individuals with autism.

You can find full text of the bill at Thomas.gov, which is the official website of Congress. Search under bill number H.R. 2609.

Most Popular Articles on Autism Bulletin, April 2007

The top five Autism Bulletin articles posted in April:

1. Nick News Focuses on Autism on April 22
2. Unconfirmed Diagnosis in Virginia Tech Tragedy; Related Notes on Autism in Korea
3. CDC Director Cites Autism as Urgent Concern, and other News
4. Autism Awareness Month Coincides with Uptick in National Media Coverage
5. Don Imus, Loud Advocate for 2006 Autism Bill, Loses His Soapbox

Most popular categories or "labels" for readers researching articles on Autism Bulletin this month:

1. Asperger's
2. ABA
3. Autism services
4. Legislation
5. Sports

Source: Google Analytics

CDC Director Cites Autism as Urgent Concern, and Other News

Autism is an urgent priority for the Centers for Disease Control, according to director Dr. Julie Gerberding (pictured at left). Gerberding told a Senate panel on April 18 in Washington that she understands the frustrations of parents and families of people with autism spectrum disorders that there are not available "more answers about the causes and possible cures," she said, according to a report in The Atlanta Journal-Constitution (see article online here).

Gerberding also said: "The profound lifelong impact of autism spectrum disorders, tremendous costs to the affected individuals and their families, the lack of known causes or cures and concerns about the increased rates of diagnosis all make autism spectrum disorders one of our urgent realities."

The Journal-Constitution added: "Although the CDC has been criticized by some autism activists and members of Congress, Gerberding said the Atlanta-based agency is best equipped to do the surveillance and research needed to understand and respond to the disorder."

Gerberding was speaking to the Senate panel while elsewhere in Washington, The Institute of Medicine was holding a special workshop on opportunities for researching environmental triggers for autism. The Institute website said it was expecting to set up space for an overflow crowd, based on its fully subscribed preregistration process.

For a preview of this autism-environment workshop, see here.

OTHER NEWS HIGHLIGHTS: Bills in Congress

There was talk in the House this week about two bills:

Rep. Michael F. Doyle, D-Penn., filed HR 1881, an act "to improve support and services for individuals with autism and their families." Doyle, who is from the Pittsburgh area, filed the bill on April 17 with three co-sponsors, New York Democrat Eliot Engel, New Jersey Republican Christopher Smith and Mississippi Republican Charles "Chip" Pickering.

The bill would spend an estimated $350 million to improve services for people with autism and their families, according to an online report from the Pittsburgh Post-Gazette. See the report here. While the newspaper doesn't cite a companion bill in the Senate, Doyle's proposal sounds like one unveiled last month by Senators Hillary Clinton and Wayne Allard. For more on that proposal, called The "Expanding the Promise for Individuals with Autism Act," click here.

Smith told the Post-Gazette he is optimistic that President Bush will support this kind of legislation.

In another piece of legislative news, the Atlanta Journal-Constitution story cited above reported that two House members, Dave Weldon, a Florida Republican, and Carolyn Maloney, a New York Democrat, planned to reintroduce a bill they filed last year to end what they call a conflict of interest at the Centers for Disease Control relating to vaccines: that the agency is responsible for both promoting vaccines and ensuring their safety, the newspaper said. The bill failed last year.

Pennsylvania Bill Would Require Insurers to Cover Autism Treatment

At the state Capitol in Harrisburg, Pennsylvania House Speaker Dennis J. O'Brien, who has an autistic nephew, told a gathering of several hundred autism advocates that he was pursuing "legislation that would require private health insurers to cover treatment" for autism spectrum disorders, the Associated Press reported. See the report here, via CentreDaily.com. The AP's estimates suggest that when applying the latest CDC autism prevalence figures of 1 in 150 American children, that means approximately 560,000 children and young adults have autism.

Canada's Top Court Won't Hear Case Brought by Parents of Autistic Kids

A group of Ontario parents have been seeking court ordered support for behavioral therapies which in the United States is typically called ABA (applied behavior analysis) but in Canada is sometimes called IBI for intensive behavioral intervention. The Supreme Court of Canada said April 13 that it would not hear the parents' latest appeal in the case.

The Ontario Autism Coalition says on its home page that while the court would not hear the case, the advocates would continue to press for legislative relief to support these therapies under Canada's national health care plan.

Read press reports here on the court decision here in the Toronto Star and here from the Sarnia, Ontario Observer.

Also see:

Canadian Parliament Panel Urges New National Policy

Senators Clinton and Allard Unveil Proposal To Expand Autism Services

Senator Hillary Rodham Clinton, a New York Democrat, and Senator Wayne Allard, a Colorado Republican, announced they are co-sponsoring a bill to expand access to services for Americans with autism spectrum disorders. The senators made the announcement on March 20 at a press conference in Washington with leaders of advocacy groups such as Autism Speaks and the Autism Society of America. You can read a press release on the announcement here via Clinton's website. You can also scroll to the end of this article to see a YouTube video clip of the senators' announcement.

The "Expanding the Promise for Individuals with Autism Act" takes a seven-pronged approach to expand access to treatment and support. It would:

* Boost funding for autism-related services at the state level by awarding grants to states "to help them provide evidence-based treatments, interventions and services."

* Target programs for adults with autism. The bill would set up a grant program specifically targeting programs in states that serve adults with autism. "These grants will go to states to provide appropriate interventions and services, such as housing or vocational training, to adults with autism."

* Increase the supply of post-diagnosis services. Because many children and families have to wait months for treatment after getting an autism diagnosis, this bill "will mandate that the Secretary of Health and Human Services develop guidelines to increase the amount and quality of post-diagnosis treatments and services" through federal and state-funded programs.

* Address a shortage of service providers. The bill would increase the capacity of "University Centers for Excellence in Development Disabilities Education, Research and Service to train professionals in meeting the treatment, interventions and service needs of both children and adults living with autism."

* Examine financing for autism services. Under the bill, the Government Accountability Office would "study financing of autism treatment and services, including current public and private insurance coverage for autism treatment and support services, and identify geographic and regional disparities in access to care." The GAO also would make recommendations for financing treatment and care services "to remove both cost and geographic barriers and attain a uniform baseline of coverage across the United States."

* Increase access to advocacy services. The bill would create a program to expand existing advocacy services to help people with autism and other disabilities get the advocacy help they need.

* Establish a center for technical expertise on autism services. The bill would call for the Secretary of Health and Human Services to set up "a National Technical Assistance Center for Autism Treatments, Interventions and Services to serve as a resource for parents and service providers." The center would provide experience in training, research translation and service provisions.

A first-reaction analysis of the Clinton-Allard proposal

Analysis: Though it's tempting to view every action of a presidential hopeful like Senator Clinton through a campaign-season lens and see it as a political ploy, this proposal -- and its inclusion of a Republican senator as a co-sponsor -- is impressive in its reach and timing. It covers a number of areas that families affected by autism have been clamoring for: increased access to services, an effort to raise the quality of existing services, care for adults with autism spectrum disorders. And, notably, it brings to the fore a national examination of how to pay for autism services. This is a question a number of states have looked at addressing, narrowly, by prohibiting health insurers from discriminating against people with autism, for example, or by setting up state task forces to study the issue.

The timing is also interesting. It was only December when President Bush signed the Combating Autism Act (see background here). That law calls for spending more than $900 million over the next five years on autism research and awareness education programs. The Clinton-Allard proposal complements the Combating Autism Act and potentially brings more services to more people -- while continuing to build momentum in Washington for action to help a growing population of disabled Americans.

Neither Clinton nor Allard mention a price tag for their bill, but two others do: it's an estimated $350 million, according to the Autism Society of America, which put out a call to alert your senator to support the proposal (see that here). Also citing that figure is Suzanne Wright who along with her husband Robert Wright founded Autism Speaks. She mentioned the bill and the figure in passing during her appearance March 21 on Larry King Live on CNN. King did a show on autism awareness with Bill Cosby and Toni Braxton, among others. Read a transcript of the program here.

And here's the video clip of Clinton and Allard's announcement, from YouTube:

Autism Bulletin's 2006 Autism Advocates of the Year

The passage of the Combating Autism Act earlier this month made 2006 an important year for those working to make life better for people with autism. That big news story -- a first step in what promises to be a long-term campaign for better diagnosis, treatments, services and research -- influences our picks. But there was a lot more going on as the list below demonstrates. Here, in alphabetical order, are Autism Bulletin's picks for advocates of the year.

Autism advocacy organizations deserve credit for raising the nation's consciousness about the rising prevalence of autism cases in the United States, for raising money to fund research and for lobbying to pass the Combating Autism Act. So kudos to national groups like the Autism Society of America, Autism Speaks and Cure Autism Now, without whom these efforts would not be possible. Recognition should also go to local advocacy organizations. Where we live outside Boston, the Autism Alliance of MetroWest organizes programs such as sibling support groups and open gym sessions which don't influence national policy but make our lives better.

Mike Bernoski went to his Congressman's local district office in Texas because he wanted to attend a meeting his elected representative was holding about what the government could do to help kids with autism. The staff for Rep. Joe Barton, a powerful Republican lawmaker who was blocking passage of the Combating Autism Act in the House, called security to escort Bernoski out of the office. It took just over seven minutes. And luckily for us, Bernoski brought along someone with a video camera, and then posted what happened on YouTube for all to see. (See the video below, and hear an interview Autismpodcast.org did with Bernoski by clicking here.) Bernoski's calm demeanor -- he just wants to tell the Congressman why his son and others with autism need the government's help -- juxtaposed with the staffers' stubborn refusal to let him in to the meeting conveyed to many the arrogance of the Republican leadership in the House. After the GOP lost the November mid-term election, Barton found a way to compromise on the autism bill he blocked. Bernoski gets some of the credit.



The center builders. These are parents like those in California and Pennsylvania who have built -- from scratch -- new community support centers, gathering places where parents can get information about services, receive services or attend fun programs: The Friends of Children with Special Needs in Fremont, Calif., and The Autism Center of Pittsburgh, which is an outgrowth of the advocacy and support work at AutismLink. . Both stories are inspiring when you think about all the other tasks it takes to, basically, live and raise your kids. You can read more about Fremont here, and Pittsburgh here.

Doug Flutie retired from pro football this year, but he and his wife Laurie have continued to use their influence to raise money and distribute grants through the Doug Flutie Jr. Foundation for Autism. The 2006 grant recipients include family-based services, education programs, summer camp, first-responder training, recreation programs and respite services.

Dr. Martha Herbert, medical researcher. Herbert, a pediatric neurologist at Massachusetts General Hospital, seeks to understand the biology of autism -- what it is, why its occurring more frequently, what can be done to treat it, what can be done to prevent it -- by looking at what is going on with our health and what is going on in the environment. Her talks to groups big and small and her article about environmental health and autism in the most recent edition of Autism Advocate (the Autism Society of America publication) demonstrate her commitment to communicating the science of this important research to the public. (You can read Herbert's article, "Time to Get a Grip," at this web page. Herbert gave a lecture about her work in October which I wrote about; see that article here.)

Don and Deirdre Imus, radio show host and environmental activist. How do I know Imus made an impact on the debate for autism legislation in Congress? Because friends of mine who know very little about autism would come up to me and ask me about the issue, or tell me they heard him railing about a roadblock in the House. You may find his brand of rhetoric controversial -- remarks comparing elected officials to rodents are designed to get attention -- but there's no doubt Imus made a difference. And he would not have done so were it not for his wife, Deirdre, an environmental activist. So, thanks Mr. and Mrs. Imus.

Estee Klar-Wolfond is the founder and organizer of The Autism Acceptance Project, a conference and art exhibit that offers a positive view about autism to the public "to create tolerance and acceptance in the community and to empower parents and autistic people." The project, based near Toronto, "is interested in scientific and ethical answers to the question, 'what kinds of help do autistics need in order to succeed and contribute to society as autistic people?' " In the process of seeking acceptance and understanding for her young son, Klar-Wolfond has used her eloquent advocacy to engage society at large.

Jason McElwain, or J-Mac, is not someone who volunteered to be an advocate. He's the autistic teenager who scored 20 points during four minutes on a basketball court after serving as team manager (i.e., watching from the sidelines) all season. Through his athletic feat -- and the stirring reaction from his peers in the stands -- Jason lived a dream that many families hope and work for: a dream of inclusion, of participation, of acceptance and celebration. Jason's experience owed a lot to his family and his coach and I would imagine many others we didn't hear about. But it also owed something to his own persistence and enthusiasm. And so the crowd went crazy. And the coach cried with joy. And sports fans around the country stopped for a moment and noticed. Read more about his feat on ESPN's website here (they gave him an award this year) and see a YouTube video below.



Michael O'Hanlon studies the Defense Department and foreign policy for a living as a senior fellow at the Brookings Institution, and he has used his public policy expertise to write forcefully and eloquently for needed changes to help families like his to cope with the financial burden of intensive autism therapies like applied behavior analysis. His op-ed articles in the New York Times and other newspapers (like last week's article in The Washington Times) are tailored for readers in decision-making positions of power. He also helped organize a conference this year titled "Autism and Hope" that gathered speakers including Hillary Clinton, to inform a Washington audience about the rising autism challenge and limited resources devoted to meeting it. (See more information here.)

Susan Senator, parent and author. Susan Senator's book Making Peace with Autism is a terrific resource for parents who want to learn from someone who has gone through -- and continues to experience -- the challenges of raising a child with autism. The book is more than that, though, because it also includes batches of how-to tips (how to tell a young child what to expect on an outing, how to stay in control of a situation in public). Through it all, she insists that it's possible to have an autistic child and still have a family life filled with the things that other families have -- joys and sorrows, ups and downs, and vacations too. "Throw away expectation, and you may be pleasantly surprised," she says.

Here's hoping there are many more advocates to toast in 2007. You can comment on this list, or add your own selections by choosing to comment below. Or send me an e-mail at michaelsgoldberg AT yahoo DOT com, and tell me what you think.

Bush Signs Combating Autism Act

President Bush signed the Combating Autism Act today. Autism Speaks released a statement which you can see here.

UPDATES:
Here's how Tony Snow, the White House press secretary, characterized the new law:

This bill will increase public awareness about autism and provide enhanced federal support for autism research and treatment by creating a national education program for doctors and the public about autism. The legislation will help more people recognize the symptoms of autism. This will lead to early identification and intervention, which is critical for children who struggle with the disorder. The President is confident that the legislation will serve as an important foundation for our nation's efforts to find a cure for autism.

The Washington press corps had a bunch of stuff to cover in today's briefing (read a transcript here), with issues that included a big debate about U.S. troop levels in Iraq, questions about a lack of movement in talks to get North Korea to stop building nuclear weapons and First Lady Laura Bush's skin cancer treatment. (It's not serious, the White House insists.) When it came to the Combating Autism Act, questions centered on whether the Bush Administration would fight for the nearly $1 billion in funding for research, diagnostic and support services for an estimated 1.5 million Americans with autism spectrum disorders. The answer? Well, it appears that it's going to be something autism advocates will need to keep fighting for.

Q: Is the President going to put specific autism funding for this new legislation in the FY 2008 budget?

MR. SNOW: Well, we're in the same position I've been in much of this week, Bret. We will wait to see a budget submission. There are two players in this, not only those who do the budget, but also members of Congress.

I'm not trying to be flip here, but I just simply do not want to be disclosing what we will be including and not including in the budget until the proper time, and that will begin in a few weeks.

Q But the fact that he signed this legislation means that perhaps he's going to be looking for making autism funding a priority?

MR. SNOW: Let me put it this way: The President is confident that this legislation will serve as an important foundation for our nation's effort to find a cure for autism. And you can read into that what you will.

CBS News Highlights Autism Law and One Special School

In other coverage, the CBS Evening News with Katie Couric visited The New England Center for Children, a 30-year-old day and residential school in Southborough, Mass., which specializes in educating kids on the autism spectrum. You can see a CBS News web page of autism coverage, including online video of tonight's broadcast piece by clicking here. (Disclosure: I have a child attending this school.)

One point the piece makes is that there aren't enough of these kinds of schools across the nation, and not enough trained teachers to handle the rising number of kids diagnosed with autism. Parents, here's a metaphor worth noting: it's easier to get into Harvard than into NECC, which turns away hundreds of families every year.

On the website, there's an extra piece of video interview with Vincent Strully, NECC's executive director, who makes the case that early intervention with young children diagnosed by trained teachers "saves society a fortune" and leads to productive futures. The Combating Autism Act is good, he says, a first step, then adds: "But we have a long way to go to help hundreds of thousands of families with no where to turn, no help."

President Expected To Sign Autism Bill This Week

The advocacy group Autism Speaks reports on its legislative update website that President Bush is expected to sign the Combating Autism Act by Dec. 21. You can see the brief notice here. Once the president signs the bill the legislation would set the stage for $945 million in federal funding -- a 50 percent increase -- for more services to diagnose and treat people with autism and also funds for research into the disorder.

Several media reports have noted that the president's signing the bill does not automatically release these funds over the next five years. There will continue to be appropriations battles along the way, notes a federal budget expert in this NBC News report posted after Congress passed the bill. That potential battle for dollars means of course that advocates for those with autism would need to keep fighting for government support.

For background about the Combating Autism Act, you can click here.

Family Respite Care Bill Approved by Congress

A bill that should benefit families who live with and care for a person with autism won approval during the lame duck session in Congress last week. The bill, called the Lifespan Respite Care Act, is designed to help family caregivers who provide daily care to loved ones with disabilities or chronic conditions.

The bill, which requires President Bush's signature, authorizes $289 million during five years for states to train volunteers and provide other services to help an estimated 50 million families who are caring at home for an adult or child with a disability, according Rep. Mike Ferguson, a New Jersey Republican, who was one of the bill's sponsors. Ferguson posted a press release on his website about the bill.

The federal legislation would let states apply for grants from the Department of Health and Human Services to set up respite care programs. It's modeled after similar programs in Nebraska, Oklahoma, Oregon and Wisconsin, according to The Autism Society of America. The Society was one of the advocacy groups lining up behind this proposal in Congress and posted a statement praising its passage.

As parents and other family members know, it is not enough to line up educational and other services for a person with autism. Caregivers need regular breaks from the action to maintain a healthy attitude, to remain the rocks of support they need to be. The Autism Society release included this interesting passage:

Research indicates that families of children with autism have greater parental stress due to challenges in caring for their children. Because of the additional care required by a child with autism, families identify respite care as a basic need, with the need increasing as the child gets older. Families who report less stress usually are the recipients of formal family support services, such as respite care.

On to the White House for the Combating Autism Act

The Senate yesterday passed the House's version of the Combating Autism Act, clearing the way for President Bush to sign it into law. While I don't yet see any public comments from the White House about this bill, statements from advocacy groups and related media coverage treat it as a given.

The online version of Newsweek has a good summary near the end of this article posted tonight, headlined, "Families Cheer as Autism Bill Passes":

Last month, a compromise version of the bill was agreed to by Barton and a coalition of autism groups, including Autism Speaks, Cure Autism Now and the Autism Society of America. The new Combating Autism Act of 2006 authorizes slightly more than the $924 million in the original bill (the new amount is $945 million) but has fewer specifics about where and how the money should be spent. The bill authorizes Congress to spend the money over the next five years, but they must vote each year to appropriate the funds. "Passing the act is a necessary first step," says Craig Snyder, Cure Autism Now's chief lobbyist. "This is the battle plan to win the war against autism, and now it's the law of the land."

It will be the law of the land, of course, after the president signs it.

Autism Speaks and Cure Autism Now issued a joint statement praising the Senate's action and noting that they had just agreed to merge their operations. You can read that statement here.

Combating Autism Bill Scheduled for House Vote

The House is expected to pass the Combating Autism Act on Wednesday, Dec. 6, after the Texas congressman who had blocked the bill reached a compromise. That's according to a brief statement by an umbrella group for 20 autism advocacy and support groups called CombatAutism.org. After that happens, the Senate would need to vote on the bill on Thursday. Then the bill would go to President Bush.

The House version, while not as strongly favored by autism advocates as the version the Senate passed in August, still would allocate about $945 million for research and support services on autism spectrum disorders. This story posted tonight by the McClatchy Newspaper chain explains that Joe Barton, the Texas Republican who's the outgoing chairman of the House Energy and Commerce Committee and had opposed the autism bill because he favored a plan to overhaul the nation's medical research institutes, worked out a compromise:

Barton was resistant to moving a "disease-specific" bill while he was working on legislation that affects the National Institutes of Health. The NIH bill passed the House in September, but Barton still had problems with the [Senate version of the] autism bill's focus on the NIH and the stipulation that researchers study environmental factors that autism activists maintain trigger the disease.

The compromise allocates funding to NIH but directs the Atlanta-based Centers for Disease Control and Prevention to set up regional centers of excellence for epidemiological research. The bill includes environmental factors in the list of research areas to be studies, but drops the Senate-passed version's provision for $45 million in research on environmental factors.

Not everyone in the autism community will greet this news warmly. Those who were pushing to get an explicit autism-environmental research project in the bill will be disappointed if not outraged. However, even with that language missing, this is a big step forward for Americans with autism and their families. And if the president signs the bill, it will put autism spectrum disorders on the nation's agenda as a problem that needs addressing.

But even if the president signs the bill, there's still one more hurdle: the federal budget appropriations process. National Public Radio today on Morning Edition broadcast an interesting report that puts the political battle over the Combating Autism Act into a bigger context: who gets to decide how the nation spends its medical research dollars. (Click here to see a web page where you can read and listen to the report.) There's some heart-felt advocacy from Elizabeth Emken, a Cure Autism Now advocate from Danville, Calif., who asserts the government has neglected autism research up until now. But there's also this warning from Dave Moore, executive director of the Ad Hoc Group for Medical Research, which lobbies for medical research funding:

"We still have a very large deficit," Moore tells NPR. "We still have a very large war that we're trying to conduct. We still have a number of other priorities, such as homeland security, that have to be funded. So the support for medical research is going to have to be viewed in the context of these larger budget decisions."

You can see past Autism Bulletin coverage of the Combating Autism Act here.

Autism Bill Still Alive in Lame-Duck House Session

The Autism Society of America (ASA) today said that Joe Barton, the Texas Republican who has been blocking the Combating Autism Act from leaving his House committee for a vote, "has approached the autism community to identify a possible compromise on this important legislation."

The ASA credits advocates' pressure on Barton for this development, and the organization's statement goes on to say:

"While negotiations are still underway, ASA is hopeful that they will yield a compromise that can be passed during the lame-duck session. ASA is working with Chairman Barton's office and other leaders in the autism community to ensure that a comprehensive, strong and effective bill is enacted."

This is potentially big news. The run-up to the November 7 midterm elections included protests and other efforts to pressure Barton, who chairs the House Committee on Energy and Commerce. In recent months Barton was blocking the Combating Autism Act, a bill already passed by the Senate which would provide about $900 million for autism research and services over the next five years. (For more background on this issue, click here.) Last week, the Houston Chronicle covered protests and pressure on Barton by parents and others such as syndicated radio host Don Imus. (See "Stalled Autism Bill Shows Funding Rift" for the newspaper story and more about parents' protests here.)

It appeared right up until the midterm elections that Barton was holding fast to blocking the bill, including posting a statement on his website arguing that what's needed more than an autism bill are reforms at the National Institutes of Health, the nation's umbrella medical research organization.

Who knows what may have moved Barton to seek a meeting with autism advocates now? Maybe it was the pressure and protests. Maybe it was the midterm elections that produced a new Democratic House and Senate starting in January. Barton (who himself won re-election with 70 percent of the vote) is said to be among those Republicans preparing to run for the post of House Minority Leader in the new Congress. Maybe moving this bill now, while he's jockeying for votes among House Republicans, helps his candidacy. Whatever the reason, passing the Combating Autism Act now, before the next Congress convenes, would be a big deal.

It's big because people with autism need to get these research efforts and services under way now. Because it took almost two years of effort by advocates and lawmakers to get this far. And it's important to act now because it's unclear what would happen in the next Congress. Though the Democrats have identified health care and medical research as priorities, they will also face pressure to show that they can be responsible budget builders. Who knows what might get left behind as the nation's bills for the Iraq war, among other things, get tallied.

Election footnote for autism parents: The Senate co-sponsor of the Combating Autism Act, Republican Rick Santorum of Pennsylvania, lost his seat to Democrat Bob Casey Jr.

"Combating Autism Act" Subject of Parents' Protests in Texas

About 80 people from families with a child on the autism spectrum staged a peaceful protest outside a political fundraiser in Richardson, Texas, attended by House Speaker Dennis Hastert, the Associated Press reported. The families were there to urge Hastert to press Joe Barton, the Republican chairman of the House Committee on Energy and Commerce, to let the House vote on the Combating Autism Act bill, which Barton so far has refused to do. (Read more about the situation here.) Hastert did not meet with the families but he told the Associated Press that he planned to meet supporters of the bill in Washington.

Supporters of the autism bill, which would provide about $900 million for research into causes and treatments and fund some programs, have been pressuring Barton in the weeks leading up to the Nov. 7 election. This Dallas Morning News story describes the efforts of supporters of the autism bill, and another bill related to breast cancer research, to get Barton's attention on the matter.

A dramatic and personal display of one family's effort to get a meeting is available at this video from YouTube.com that's getting a lot of attention among autism parents. See below as "Mikebtexas," who tries to get admitted to a meeting Barton is holding with families about autism, fails. It's a seven-minute video of one man's disillusionment in the political system; and it's a testament to the power of gate-keepers in a Congressman's district office.

"Combating Autism Act" Caught in Political Wrangling

This is a photo of Joe Barton. A Republican member of Congress from Ennis, Texas, Barton chairs the House Committee on Energy and Commerce. You can read his official biography and learn that as a former oil industry consultant he cares a lot about making sure energy supplies are high and prices are low. His agenda also includes protecting television viewers from what he considers indecent programs and cutting capital gains taxes, among other priorities. What is not on his agenda is helping people with autism.

Barton has this distinction: He's the House member who is blocking the Combating Autism Act from reaching the House floor for a vote when, according to advocates for the bill, a majority of House members now supports its passage. That is a big deal because the Senate in August passed its version of the bill which would provide about $900 million for autism research and services over the next five years. (You can read background about the legislation, and see links to the bill here.)

There are some things that parents and advocates can try to do about this, but first it's important to mention this morning's American Morning show on CNN, during which Barton appeared with Pennsylvania Senator Rick Santorum, a co-sponsor of the Combating Autism Act, to discuss the legislative holdup. (You can see a full transcript of today's show here.)

There's not going to be an autism bill this year, Barton said, because he wants to see Congress reform the National Institutes of Health (NIH). He has pushed such a bill through the House and now wants to see the Senate pass it, too. When that happens, he says, he will consider having the House look at the autism bill. Barton argued on CNN that his NIH reform bill would make it possible to focus more on autism -- a position rejected by Santorum, a fellow Republican. A soundbite from Barton:

"We think that the NIH reform package puts in motion the accounting principles, the transparency principles, all the various things to make it possible to focus more on autism. Again, we're not anti-autism. But the senator's legislation has a specific authorization level, which no one outside of the autistic community supports that."

(Reading Barton's remarks, remember that the Senate passed the bill unanimously, and, as of tonight, there are 228 of 435 representatives who said they will support it. Those numbers have to include people who are "outside the autistic community.") For the record, Santorum said that the Combating Autism Act was needed to research the causes of the disorder, specifically environmental causes.

What to do now? The people at CombatAutism.org, a coalition of 21 advocacy, support and research groups, has a list of Congressional leaders to contact and how to contact them. After registering your objection with Joe Barton, you can contact his political bosses, Majority Leader John Boehner, R-Ohio, and House Speaker Dennis Hastert, R-Illinois. Tell them they can talk to you about something other than a House page sex scandal. Tell them to press Barton to put the autism bill on the House agenda when the House reconvenes after next month's election.

Progress on "Combating Autism Act," But Time Grows Short

First, the good news: the Combating Autism Act of 2006, which would provide $900 million in funding for research and services over the next five years, has 190 co-sponsors in the U.S. House of Representatives, according to the advocacy group Combat Autism. That means proponents have convinced about 50 new House members to join as co-sponsors since August 7, and are 28 co-sponsors short of a majority. The bill has already passed the Senate. You can read a recap here, which includes links to House and Senate versions of the bill.

Now for a sobering thought: there's one week left in this year's term, as Congress prepares to go home for the stretch run of members' re-election campaigns. As this New York Times article suggests, there's a lot left on politicians' plates-- and autism legislation doesn't make the front burner, what with issues like Iraq, definitions of torture, port security and immigration, just to name four. House and Senate leaders tell The Times that they will reconvene for a lame-duck session after the election, which means there will be time to work on some last-minute business.

But it doesn't leave much time, either way. You can go to this branch of the Autism Speaks website to see if your House member is a co-sponsor. If that person is, great. If not, you could consider sending a note or e-mail pointing out the merits of the legislation. And if you know friends or family who care about helping people with autism advance in society, and who care about researching the causes of this spectrum of disabilities, you can ask them to check if their House member is on board. If not, consider that election time is a good moment to get a House member's attention about something a constituent cares about, deeply.

On to the House for the "Combating Autism Act"

Thursday night, Aug. 3, the Senate passed by unanimous consent the Combating Autism Act, Senate Bill No. 843. Now it's on to the House of Representatives. The coalition of advocacy groups that has been working to win approval for the bill has a website, CombatAutism.org, that urges supporters to contact their representatives to support the House version of the bill, H.R. 2421. You can visit CombatAutism.org to see if your Congress member is one of 141 co-sponsors of the bill. If not, you can contact him or her to urge their support. The website says the next 30 days are critical to winning support in the House -- no doubt because the November elections loom just 90 days away from now.

If you don't have time to read the 31-page Senate bill, here is a recap of its five-year, $900 million agenda.

The House version, H.R. 2421, is (so far) shorter in terms of the money it would devote to autism screening, research and treatment. It calls for spending $570 million over 5 years, in the latest version available on the Congressional website, Thomas.gov. So if an autism bill does make it through the House, it will be important to see whether it moves any closer to the Senate version.

The House bill would set up an "Autism Coordinating Committee" in the federal government, with officials from the Department of Health and Human Services, Centers for Disease Control and Prevention. The bill says others should be included -- such as a Department of Education expert, and families and others who deliver services to people with autism, as well as people on the autism spectrum -- but leaves such decisions up to the secretary of health and human services. This committee would coordinate autism research efforts.

Some important similarities are in both the House and Senate bills. The House version also calls for monitoring autism screening of children, and for funding research and treatment of people with autism spectrum disorders. On treatment, the House bill calls for providing "comprehensive medical care for individuals with autism through evidence-based practices, with specific attention to medical conditions that may be associated with autism, and to disseminate information on the medical care of individuals with autism to health professionals and the general public." It also says the government will award a grant "to a national organization that will establish and support regional centers of clinical excellence to provide medical care to individuals with autism and promote research aimed at improving the treatment of such individuals, and that will build a shared national medical database to record the results of treatments and studies at the regional centers."

One last thing. According to a statement from Cure Autism Now, one of several advocacy groups lobbying for passage of this legislation, the Combat Autism Act -- if it passes -- would be one of only a handful of single-disease laws. The group says the most notable one in recent times was the 1990 Ryan White CARE Act for HIV/AIDS.