Tuesday, October 31, 2006

Supreme Court Takes Up Case of Parents of Boy With Autism

The United States Supreme Court has agreed to hear the case of an Ohio family who sought to sue their school district over services to their autistic son without hiring a lawyer. The Associated Press has a summary of the case on The New York Times website. The Supreme Court explains here that the issue before the justices is whether, under the Individuals with Disabilities Education Act (IDEA), the family can represent themselves without hiring a lawyer. (The question of whether the services that the Parma, Ohio, school district is offering is not something the Supreme Court will decide.)

Jeff and Sandee Winkelman have been fighting this case for some time and have won some points in lower courts. School officials have argued during these battles that the Winkelmans are not legally allowed to represent their son without using an attorney.

Sandee Winkelman told The Times in an article last May that her family could not afford thousands in legal fees, and they had nowhere to send her son Jacob to school. "When you're in a do-or-die situation, you do what you have to do," she said. (The article is here but you need a subscription to read it.)

The school district argues that IDEA requires lawyers to represent disabled children in court. The case is called Winkelman v. Parma City School District.

Monday, October 30, 2006

"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.

Friday, October 27, 2006

Useful Autism Research List Available

There's a torrent of news reports about autism-related research studies coming out. The Autism Speaks website has a useful list of topics and links to reports and information about these varied research efforts dating back to November 2005.

Find the list by clicking on this website link. The list of research topics includes autism-related inquiries into the environment's impact on human health; autism's link to brain structure; and the role of genetics in autism research. The most recent symposium, held Oct. 13 in Boston, convened a group of doctors to review the status of research into gastrointestinal disorders and autism, develop a consensus on the best areas of future research and the best G-I medical treatments for people with autism. Autism Speaks promises to make a report about the meeting public.

Thursday, October 26, 2006

Comedy Central Raises $2 Million for Autism Programs; Boston Walk Adds $950,000

Two quick updates on recent fund-raising events described here.

"The Night of Too Many Stars," the Comedy Central benefit televised Oct. 16 raised $2 million for Autism Speaks, and autism education and support programs. See video highlights from the show hosted by Jon Stewart here. (If you have time for just one video clip, check out Steve Carell.) New York Magazine attended the show and has a fun writeup here.

The Greater Boston Walk for Autism Research on Oct. 15, recapped here, raised $950,000 thanks to 11,000 participants and corporate sponsors, according to the organizers at Autism Speaks. Of course, the Boston event is one of many such walks around the country. About 20,000 participants in the New York City edition last weekend raised more than $1.5 million.

Tuesday, October 24, 2006

New York City's Autism Problem

"New York City is way behind in educating autistic kids--and now for-profit private schools are getting millions in public money because of it." That's the sharp angle on a story in the current issue of New York magazine entitled, "The Autism Clause: How Lawyers Can Get Around the $140K Education Price Tag," which takes readers on a tour of New York City autism education programs for young children, both public and private, and lays out the hefty price tags which the city and families pay for school programs and after-school support.

The fact is that effective programs for kids on the autism spectrum are staff intensive, and that means they cost more per student than, say, typical education programs. Added to this fact of life is the controversy-filled special education bureaucracy. In most mainstream media stories, this one included, parents are predictably in the thick of it (hint: they're not heroes). Parents here are portrayed as effective advocates for their kids who need help. But they are also set up as greedy, willing partners with aggressive law firms and opportunistic private for-profit schools who seek to cash in on the city's low supply of suitable autism services. Other big city school systems also have problems providing such services, but the article suggests that the huge New York City district is a particularly attractive target for lawyers who can easily point out its failings and win tuition fees.

The article cites the just-opened Rebecca School in Manhattan as one of the opportunistic schools, saying "New York City's open checkbook for autism is at the heart of the business plan" of the for-profit company launching it, MetSchools Inc. (In spite of its $72,500 tuition rate, the Rebecca School doesn't promise a one-to-one, but rather a two-students-to-one teacher ratio for preschool kids.)

Reading a price tag like that (and higher ones), it's easy to imagine readers of this magazine story wondering why these schools cost so much, why the city and its taxpayers have to pay. No wonder New York Schools Chancellor Joel Klein is opening more pre-kindergarten autism classes -- and hiring more lawyers to defend the city against special education legal challenges. The city also has opened the New York Center for Autism Charter School, its first such program. And the fact is, no one in this article questions the need for more autism services in New York. What the story doesn't ask is: When will the city open more such programs?

Monday, October 23, 2006

The Mirror Theory of Autism

Scientific American's November cover story, "Broken Mirrors: A Theory of Autism," explains ongoing research into the social impairment demonstrated by children with autism spectrum disorders. The article, by researchers from the University of California, San Diego, is a science paper written for laypeople. Spending half an hour reading it gives you a decent grounding in a couple of areas of autism-related medical studies.

Researchers have been using different types of brain scans to explore why people with autism don't learn how to imitate others' movements, or mimic others' behaviors the way typically developing people do. Studies have shown that certain neurons in the brain fire when a person makes a voluntary movement, and that so-called "mirror neurons" also fire in similar ways in response to observed stimuli. For example, the researchers write of typically developing people studied, "investigators found that certain neurons that typically fire in response to pain also fired when the person saw someone else in pain." People with autism, however, do not show this kind of neurological response, the researchers write. (There's good background information on mirror neurons at the PBS show NOVA which you can find here.)

The Scientific American authors, Vilayanur S. Ramachandran and Lindsay M. Oberman, write that more work needs to be done, both in understanding what's going on and figuring out if there are medical treatments possible. "Scientists do not yet know which genetic and environmental risk factors can prevent the development of mirror neurons or alter their function, but many research groups are actively pursuing the hypothesis because it predicts symptoms unique to autism." (They say one drug candidate for study is the methamphetamine "ecstasy.")

The article also touches on research into another aspect of autism, the tendency of people to be overwhelmed by their surroundings and appear to seek solace in self-stimulatory behaviors. The authors say they are looking into the brain region called the amygdala "which acts as a portal to the emotion-regulating limbic system." Studying children's' responses to stimuli leads to the authors to suggest kids with autism have a distorted view of the sensory landscape around them. Self-stimulating activities, like repetitive motions, have a calming effect on the kids. As with mirror neurons, research continues into the causes and potential treatments.

Tuesday, October 17, 2006

This Just In: The News Moves Fast. Autism Research Doesn't.

Monitoring news coverage of autism research is like watching one of those live police car chases on California highways that TV stations used to feature regularly: it is an exercise full of information but lacking in insight. We can see that the cops are following a motorist. But why, exactly? Why won't the motorist pull over? What does it mean? And why is it on TV?

TV, it turns out, is at the center of the latest buzz in autism research, featured yesterday in the online magazine Slate. (See the article, "TV Might Really Cause Autism," by clicking here.) Gregg Easterbrook, a visiting fellow at The Brookings Institution and a journalist who pro football fans know as the Tuesday Morning Quarterback columnist on ESPN, came up with this hypothesis: it was in 1980 that the United States started to see a rise in autism cases, according to government reports, and it so happens that was the same year when children's television programs -- on cable channels, and on videos -- became omnipresent forces in very young children's lives. Could the two be related?

Lo and behold, economist Michael Waldman and his research team at Cornell University's Johnson School of Business, this week published a paper, "Does Television Cause Autism?" on the school's website. (Find it online here). Now the fact that an economist is concerned with rising autism rates, and contributing to the research by tackling this question, shows the widespread interest autism has gained as a subject of inquiry -- "one of the most important health care crises facing the United States," as the study says. But reading through the paper, and Easterbrook's summary of it, one learns these facts:

1.) When it rains, people watch more TV.
2.) In the areas of California, Oregon and Washington where it rains more, people watch more TV.
3.) In those areas of those three states where it rains more and people watch more TV, more children are reported to have autism.

The problem, of course, is that just because 1, 2 and 3 are true doesn't mean that watching TV leads to autism. Correlation, things happening at the same time, doesn't necessarily lead to causation. Like watching a police car chase on live TV, it's easy to see action. But meaning and understanding are elusive. (The Freakonomics blog has a more detailed critique of this study.)

The Cornell authors readily note their work is not conclusive: "Although our findings are consistent with our hypothesis, we do not believe our findings represent definitive evidence for our hypothesis. The only way to establish definitively whether or not early childhood television watching is a trigger for autism is to more directly test the hypothesis." One suggestion they give: "monitor the viewing habits of a large number of children from the ages of zero to three and see whether the children who are eventually diagnosed with autism on average watched more television before the age of three."

For parents, there are a few takeaways from the Slate article and Cornell study and the ongoing flow of autism research that comes out in the media:

* Do what we can to encourage more research. Momentum continues to build as the public becomes more aware of autism as an important challenge for society. There are economists, journalists and parents of all backgrounds and professions who are asking questions now, in addition to scientists, doctors and educators. Lobby for their continued efforts.

* Know the general themes of autism research. This is a growing list that includes genetics and heredity, the environment including pollutants, brain function and structure, general physiology, immune systems and now ... television.

* Understand the limits of media coverage. News stories can only tell so much. See who's writing it, and how many people and studies they quote (rule of thumb: more sources is better). And try to evaluate whether any study looks at alternative explanations for the findings it reports. If it doesn't, that's a potential weakness.

Sunday, October 15, 2006

Raising Money for Autism Research -- and Raising Spirits for Parents

Thousands of people are raising millions of dollars each weekend this fall at events around the country like today's Greater Boston Walk for Autism Research organized by Autism Speaks. (For a list of walks around the country, see this link.)

Sporting team t-shirts with names like "Alex's Allies" and "Danny's Dream," there's no question that most of the participants want to do their part to help find effective treatments for autism, eventually the causes, and perhaps someday even a cure. But there's another, almost mundane motivation for many of the parents -- a chance to just hang out with their children on the autism spectrum in a place where their kids can be themselves and no one is going to stare, ask what's wrong or wonder silently why they are "so weird." Because everyone "gets it."

Beth Kaufman Kramer of Brookline, Mass., who has two young children on the autism spectrum, organized a team of more than 20 friends and family members to trek the 3.1-mile route along the Charles River. "Maisie's Groovy Gang," which included three grandparents, an uncle, an aunt, dear friends and teachers, raised more than $1,100 for the cause, while honoring the tremendous gains 6-year-old Maisie has made since her diagnosis four years ago. Taking turns with her husband, Brad Kramer, pulling Maisie's wagon and pushing their 2-year-old son Gabriel's stroller, Kaufman Kramer felt something she sometimes struggles to feel in her daily routine of coordinating early intervention services, meeting with therapists, and witnessing her kids' challenges playing with peers at the playground down the street.

"So much of the time, being a parent of children with autism, you're just bummed and sad," Kaufman Kramer said. "But I just love going there [to the autism walk] because all of these autism parents are smiling and happy. You feel like you're not alone and there's this colossal sense of community. Everyone there knows what we're going through, what our lives are like."

-- By Carol Gerwin

Thursday, October 12, 2006

Songs Written for Parents of Kids with Autism

For a parent with a young child who has autism, listening to selections from Jamie Manning's album "What Remains" is like coming home, with all the complex feelings that concept carries. Manning's Kenny Loggins-like vocals lead these tunes, which range from rock rhythm and blues numbers to softer folk songs, through a familiar set of emotional rooms.

There's a sense of loss, a feeling that an irrational turn of events has derailed the life you expected when your baby arrived. There's the wish that you could do more to help your child thrive. There's the bittersweet acknowledgement that because of the sacrifices you need to make to help your son or daughter achieve developmental gains, your home is probably not the nicest one on the block. And most of all, there's the very powerful sense that parenting a child with autism strips the experience down to its essence, that this is a relationship that equals love.

Now if that sounds like mushy TV-movie-of-the-week kind of stuff, it's not. Manning conveys these songs in a straight-ahead style with lyrics that avoid cliche. You can listen to song excerpts on his site. He pledges to donate 5 percent of the proceeds for his CD to Autism Speaks.

A special recommendation for fathers out there. If you have a few minutes, listen to the conversation that Jamie Manning and Michael Boll, host of AutismPodcast.org, recently held. You can find the streaming audio file here. What makes this conversation interesting is the honesty and openness the two fathers share about their experiences. All generalizations have flaws, but here's one: Moms are better than dads about supporting each other during the ebbs and flows of autism parenting. So time-pressed dads out there can listen to this podcast and get, say, a year's worth of support group talk in about 15 minutes. And they don't have to leave home. Or talk.

"My wife and I were on track for a pretty typical, comfortable lifestyle," Manning says in this conversation. There was college, marriage, his music and a day job. They bought a house and planned a family. They had a child. Life was great.

"It's so easy to map things out," he adds. "And then what autism does is that it comes in with a sledge hammer and just ruins everything. From a parent's perspective, it absolutely strips you down to your absolute core." And so this music album answers the question, "How do you react when all your assumptions are destroyed? How do you deal with it, as you go through a recovery process?

"What remains," he adds, is that "all the things you thought were important get stripped out of your life. And what remains is love. The love of your spouse, hopefully, and certainly the love for your child and the joy you can take again."

Wednesday, October 11, 2006

Studying Autism as a Whole Body Condition, with Environmental Factors

Much autism research focuses on the disorder as centered in the brain, a condition that's based on genetics, is forever with you, and is treatable, but incurable. But what if that's not the whole picture required to understand the causes of autism and treatment options? What if you took a broader lens, one that considers other organs of the body, and the way they relate to each other, and to genes and the biochemical processes that run among them? And what if one also includes environmental factors, especially the tons of hazardous chemicals developed and released onto our planet and atmosphere every day?

That's a layman's translation of the approach that Dr. Martha Herbert, a pediatric neurologist at Massachusetts General Hospital, takes in her research. This evening, Herbert spoke to the Autism Alliance of Metrowest, a Boston area family support group, about her research and her paper "Autism: A Brain Disorder, or a Disorder That Affects the Brain?" (from Clinical Neuropsychiatry, 2005).

What's interesting about Herbert's research is her willingness to challenge assumptions that, she argues, underlie much of current medical thinking about autism as a fate, something that's hard-wired into children and remains a static disability which is sometimes treatable with therapies, but essentially incurable. She argues that with the vast quantities of chemicals industrialized nations like the United States release into the atmosphere and environment, we all are walking around with toxins in our systems; these pollutants increase our risk for autism, and a host of other diseases like cancer and Alzheimer's.

And so Herbert builds upon the myriad studies in anatomy -- of the brain, the gastrointestinal system, and the immune system -- as well as those in genetics and environmental hazards to public health. Contemplating these factors together makes the picture more complex, but she said the approach also holds promise for understanding the biochemistry and genetic tendencies of people with autism whose bodies may be more susceptible than the general population to pollutants. And gaining that understanding should lead to treatment options for short, medium and longer term benefits. (When? That is not clear.)

Herbert travels the world sharing ideas with researchers and making presentations, including to conferences held by groups such as the Autism Society of America and Defeat Autism Now. And for parents who may have trouble following the steady onslaught of autism research, her remarks, peppered with references to dozens of studies published and forthcoming, made her sound authoritative. She cited a 2004 paper by Johns Hopkins researcher Diana Vargas (see press release) as "the most important autism paper" she had seen because it showed that some people with autism exhibit signs of brain inflammation, suggesting that the condition is linked to the triggering of the immune system. This kind of evidence makes studies of environmental factors urgent, she said.

And Herbert's environmental points were striking. She cited research that shows, for example, that U.S. chemical production doubled pesticide manufacturing between 1964 and 1982. A study in Texas showed a potential correlation between clusters of autism cases and the presence of toxic chemicals in the environment. A study of blood taken from umbilical cords of newborn babies showed the presence of 287 chemicals such as those used for flame retardant clothing, pesticides and other pollutants. These findings and her own brain scan research, lead her to study the biochemical mechanisms that link genetics, the brain and behavior.

"There's enough things going on, that we should include a strong component of environmental factors [in autism research] to find out what is going on and how people are getting sick," Herbert said. "I don't think the scientific community admits that we have a problem."

Monday, October 09, 2006

Comedy Central Benefit for Autism Awareness This Sunday

Comedy Central is producing its first live, on-air and online special event this Sunday at 8 p.m., to raise money to benefit education and research programs for children and adults with autism.

"Night of Too Many Stars" is taking place at the Beacon Theatre in New York City. Jon Stewart, host of The Daily Show, hosts this event. Performers include musicians like Elvis Costello and Moby, comedians like Stephen Colbert, Will Ferrell, Mike Myers, Ben Stiller and Steve Carell. NBC News anchor Brian Williams also is slated to appear.

The live performance will benefit two education centers for students with autism, the Alpine Learning Group in Paramus, N.J., and the New York Center for Autism Charter School in New York City, among other autism education programs and the Autism Speaks advocacy group.

So if you can't go, you can watch on TV and the Internet. And if you have Apple iTunes, you can buy a video of the show for $1.99 starting on Monday, and the proceeds go to the autism organizations cited above. See more information about that option in this press release.

Thursday, October 05, 2006

"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.

Tuesday, October 03, 2006

Anti-Autism Remark at Center of U.K. Political Row

A controversy erupted this week in Britain because of a Conservative Party politician's remark that sounded like he was insulting a rival for having autism. The controversy is interesting because it shows the ability of advocates for people with autism to deliver media scorn on a public figure who did something parents of kids with autism see happen frequently in public or on the playground: insult, disparage or ignore their children.

Here's what happened. George Osborne, who is a high-ranking member of the Conservative Party, "was accused of mocking hundreds of thousands of people with learning difficulties after he joked that Gordon Brown was autistic," The Times of London reports today. (The BBC has a report on the incident here.) Gordon Brown is Britain's chancellor of the exchequer and the man presumed to be Prime Minister Tony Blair's successor when he steps down as Labor Party leader.

As the newspaper recounts, Osborne was telling a Times columnist that his brothers called him "Knowledge" because of his memory. When the columnist "suggested to Osborne that he might have been faintly autistic, Mr. Osborne replied: 'We're not getting into Gordon Brown yet.'"

Autism advocates lashed out. The National Autistic Society released a statement saying that the use of terms like autism and Asperger syndrome as "a criticism of someone's social skills only perpetuates the confusion that surrounds the condition" which affects 500,000 people in the U.K.

Also criticizing Osborne was best-selling novelist Nick Hornby who was quoted by the media as saying that Osborne "doesn't seem to have noticed that most people over the age of 8 no longer use serious and distressing disabilities as a way of taunting people."

Hornby, it turns out, has a 13-year-old son with autism. He is one of the parent advocates at an organization called Treehouse, a national educational charity for children with autism. Treehouse started a school in North London in 1997 using the principles of applied behavior analysis (ABA). Expansion plans for the school mean it will serve 80 children in 2008.

A quick surf around the Treehouse website shows what parents and families can do to raise awareness and money and build new services for kids with autism. They can even tell a politician where to get off when he dashes off an ignorant insult.

Monday, October 02, 2006

City of Boston Honors Flutie for Autism Awareness Work

The City of Boston has named Nov. 13 as Doug Flutie Day and is honoring him at a concert to benefit the foundation he and his wife established in honor of their son who has autism. The Boston Globe reported this news today. A poster for the Symphony Hall concert, which features Keith Lockhart, the Boston Pops conductor, and the rock band Boston, is available here.

Flutie has used his fame as a pro football player, and now TV sports commentator, to raise money to support families who have a child on the autism spectrum. The Doug Flutie Jr. Foundation for Autism has raised more than $8 million for autism awareness, research and community-based programs since its founding in 1998.