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.

The Blogosphere As Parenting Resource

The blogosphere's value as a resource grows as the web medium matures. Out here you can find lots of fellow parents who share useful information. There are directories of such blogs (see Autism Hub, Technorati, Top 10 Sources and the Autism Bloggers Ring for examples) and if you wanted to, you could easily lose yourself in the virtual stacks. It's also possible within a short time to find what most interests you, whether that means reading about one family's experiences, studying a parent-scientist's take on new research or seeking news and information. I hope from time to time to share some useful and interesting links to other autism-centric blogs. Here are three:

1. Autismpodcast.org, is a series of audio interviews hosted by Michael Moll, a classroom teacher who has a son with autism. His recent interview with Mike Bernoski, the dad who went to lobby for the Combating Autism Act at Congressman Joe Barton's office with a video camera, is typical of his efforts to share information that is both interesting and empowering to other parents and their families. (Example question: why did you look so calm on the video? Answer: "If you start screaming and looking nutty, it's human nature that people will instantly go to the other side of whatever it is you are saying.")

2. Bartholemew Cubbins on Autism is the nom-de-blog of a parent who also happens to be a scientific researcher. He delivers short commentaries using his voice over videos, including scientific analysis of research he finds interesting for its rigor or problematic for its lack of same. He has a particular dislike for what he describes as the undocumented promises chelation experts peddle to parents desperate for a fix. But my favorite of his posts is the answer to the question, "What do I do for therapy with my child?" (Check it out here.) Some of the answers: swimming, playing keyboard, soccer ball kicking. He's answering the intensity of the question with the calm idea of having fun with our kids.

3. Whitterer on Autism is by mcewen, a British expat in California, mother of four, including two children on the autism spectrum. She manages to convey a sweet sense of humor both in her posts and in the photos she chooses to include. If you have only time for one short essay, read "7 Tips - Coping mechanisms for parents of children who have just been diagnosed with autism" and pay attention to the last one:

7. Seek out aforementioned child/[ren], the same child/[ren] who now owns a new label. Hug and kiss that same child/[ren] with or without labels.

Kentucky Autism Task Force Issues Recommendations

The Kentucky Commission on Autism Spectrum Disorders recently issued 15 recommendations for the state to enact both legislation and program changes to help an estimated 24,000 Kentucky citizens who have autism. If you don't live near Louisville, but want to familiarize yourself with issues that other states should be tackling, it's worth scanning the 39-page final report. (See link at the bottom of this website that says "KY ASD Comprehensive State Plan." It brings up a Microsoft Word document.) The commission is introducing legislation for consideration in the 2007 General Assembly session.

The recommendations include:

• Creating a statewide program "responsible for implementing and monitoring services and supports for individuals with autism spectrum disorders and their families and caregivers."
• Establishing an advisory board that includes parents, siblings, legal guardians, service providers, adults with autism spectrum disorders to meet regularly with those running the statewide program.
• Finding the money to pay for services. Seeking waivers to the Medicare and Medicaid programs to help pay for autism services. Getting state money to pay for services not supported by Medicare and Medicaid.
• Fully funding early intervention programs for young children with autism.
• Coordinating autism services for kids in public schools with the state Department of Education.
• Hiring qualified staff in school districts. Developing training programs for such staff and others working directly with people with autism and working with families and other caregivers.
  
• Providing extended school day and school year services for children with autism "without the need to show regression."
• Mandating autism screening for all children at 18 months, two years, four years, initial school physical and sixth-grade school physical.
• Mandating insurance coverage to pay for autism-related services including Applied Behavior Analysis (ABA) services for people with pervasive developmental disorder that exceeds current state limits of $500 per month. Eliminating insurance deductibles and co-payments associated with this benefit.
  
• Identifying regional service centers that can disseminate information and provide training about best practices for treating autism to educators, health care providers, other service providers, families and other caregivers.
  
• Providing vocational training programs for people with autism.
  

The report ends up by urging those who care the most about people with autism -- including their families, caregivers, and autistic individuals themselves -- to monitor the state government's progress on enacting all of these initiatives.

The Louisville Courier-Journal newspaper published an editorial titled "Better Autism Services," on Dec. 23 praising the work of the state commission. The editorial notes that Kentucky still needs to come up with an estimated price tag for its recommendations. State Rep. Scott Brinkman, a Louisville Republican who led the autism task force, told the newspaper, "It's going to require some significant resources." The paper concludes:

Of course, much the same kind of statement could be made about other needs affecting Kentuckians -- including those with other forms of learning disabilities, mental retardation, and so forth.

But the rising incidence of autism, nationally and in Kentucky, makes it a pressing problem. Rep. Brinkman and his panel deserve praise for addressing it.

Autism Center Gives Parents Reason to Celebrate in Pittsburgh

What started as one mother's drive for information about her son's development has turned into a growing community resource. And the photo above, taken last week AutismLink's holiday party, is a symbol of that success. More than 150 people, families with a child on the autism spectrum, gathered at the Center for Creative Play in Pittsburgh. (See an online photo gallery of the party here.) It's one of several events that Cindy Waeltermann, director of AutismLink, organizes just for these families. Past outings have included a day at a fishing pond, a "pumpkin trolley" ride in the fall, a movie theater with spaces for kids to take trampoline breaks. She also has arranged special offers for passes to a zoo and sporting events.

But that's just the beginning. Last month, Waeltermann and AutismLink opened the Autism Center of Pittsburgh, which offers a place where families can get services for children including medical evaluations, occupational and speech therapy, and information about resources. (The Pittsburgh Post-Gazette covered the opening in an article you can read here. Note the familiar platform swing in the accompanying photo.)

"We want to do as much as we can to help these kids. We're going to constantly expand, as much as we can. There's tons of needs out there," Waeltermann told me in an interview. She says her vision for growing services extends to autistic teens and adults.

The concept that Waeltermann has come up with is simple but powerful: she finds a way to provide the space -- in this case, in a medical office building in the North Hills neighborhood of Pittsburgh. Then she brings practitioners in for office hours. Parents bring their children to the new hub she's created. Most of the services offered are covered by medical insurance or Medicaid. In the first four weeks since it opened in November, 47 families signed up for O.T. and other appointments.

"The demand is huge and eventually we're going to need to expand. In Pittsburgh, the bigger [autism] diagnostic centers have a six- to eight-month waiting list. We got independent diagnosticians so we can do it without a wait," Waeltermann said.

That kind of waiting list is what got Waeltermann to get going on her own efforts. She is mother of two boys with autism and grew frustrated with the lack of information available about what to do and where to do it.

AutismLink started about five years ago as a website, run by Waeltermann, which provides news and information about events and research, and also sells discounted kits to help parents' groups put on conferences and fundraising events. These materials have proven so popular that proceeds from their sales have provided some funds to help open the Center in North Hills and a second center in New Kensington.

Waeltermann says she has heard from a number of families beyond Pittsburgh, asking her when she will bring a new autism center to their area. She said she's interested in doing more. Right now, though, she has to act as a receptionist.

"I had always wanted to start something like this," she said. "You're carting your kid here and there, and I thought, wouldn't it be great if everything was in one place?"

Florida Awards $700,000 Grant to Start Tampa Autism Center

The Florida Department of Education has awarded a $700,000 grant for a new autism center near Tampa to be developed and run by a private company that has built more than 100 schools in 14 states.

Educational Services of America, a Nashville-based company started in 1999 (see their website here), announced it received the grant to build the Florida Autism Center of Excellence near Tampa to serve students aged 3 to 23 in six Florida counties. The company last week issued a press release (see it here) which was picked up by several Florida news media outlets. The release states in part:

"The Florida Center of Autism Excellence will provide a comprehensive program to address the unmet needs of students with Autism Spectrum Disorders," Mark Claypool, president and chief executive officer of ESA, said. "We believe that children and young adults with autism can advance in their academic and interpersonal skills if they are given the right type of instruction, encouragement and tools to learn in a safe and healthy academic environment.

"Unfortunately, current public education and social programming for students with autism is severely limited by a lack of resources and expertise, and many students simply do not receive the individualized programming that will help them progress from elementary school through high school and transition to post-secondary education," Claypool said. "That's exactly what FACE will provide students in these six counties."

FACE will offer three specific programs:

* Spectrum is a nationally recognized program serving students ages three to 22 with moderate to severe autism. Spectrum offers an individualized, language-focused, outcomes-based approach in a highly structured environment to help students transfer their newly acquired skills to everyday life.

* College Living Prep serves middle and senior high school students with Asperger's Syndrome, an Autism Spectrum Disorder, and non-verbal learning disabilities and offers academic, social development, recreational therapy and independent living skills programs.

* College Living Experience is a comprehensive program that provides structured and highly individualized assistance with academic, independent living and social skills to assist students with special needs who attend college or vocational school.

People interested in learning more about the Florida Autism Center of Excellence may contact ESA at 615-332-4900 or visit www.esa-education.com

The Tampa autism center is a non-profit entity. What's interesting about the Nashville company chosen to run it: it's got venture capital backing from New York-based investors at Trimaran Capital Partners, whose portfolio includes El Pollo Loco, a Mexican fast-food chain; specialty retailer Urban Brands; Reddy Ice, which supplies packaged ice to Wal-Mart; and International Transmission Company, described as "the first independent electric transmission company in the U.S."

That Trimaran investors describe Educational Services of America as "the nation's leading operator of K-12 special education schools" says something about the growing business opportunity they must see in educating kids with special needs. Can that for-profit drive mesh with the public service mission of education, and what these kids with autism need?

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."

An Autism Support Center Grows in Fremont

A group of Chinese-American families in the San Francisco Bay area recently opened a family support center that offers support services and social gatherings for families of children with autism and other disabilities including cerebral palsy and Down Syndrome. The Friends of Children with Special Needs Center was the subject of a good newspaper report by The MediaNews newspaper chain. You can read the story here which ran yesterday in the Contra Costa Times.

The group started in 1996 as a family support group; over the years, the families raised $2.5 million to open a 6,000-square-foot center last summer in Fremont, Calif. The center uses grants, government funds and private donations to offer dance classes, social gatherings, parent support groups, after-school classes and more. The list of programs is impressive; you can find it here. While Chinese culture is in the air here, it's a multicultural crowd with Hispanic and other families represented, the newspaper reports. A representative from the Autism Society of America says she believes the center is the first of its kind.

The San Jose Mercury News produced a video visiting the center and Anna Wang, one of the center's founders and leaders, whose teen-aged son Lawrence has autism. You can see the video by clicking here. (It took a while for it to start on my computer, so you might have to be patient.)

If you have a few minutes, take a look because it's an empowering story for parents. Here's a group of families who started with nothing but each other and have built a big, important resource. Anna Wang says: "We wanted to build a model that shows a society that is kind and accepting to the special needs individual."

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.

Another Review of Sigourney Weaver in "Snow Cake"

The Toronto Star has a good review of "Snow Cake," the film in which Sigourney Weaver plays a high-functioning autistic woman who has to cope with a death in her family. This is "a film for mature, discerning audiences who still believe that cinema can illuminate the human condition," reviewer Bruce Kirland writes. It also says:

Weaver plays an adult with autism. She functions rather well and on her own terms in Wawa, Ontario. She lives alone in her own house, works in a supermarket stacking shelves and maintains contact with her adult daughter.

Weaver, who rigorously researched autism and adopted phrases as well as physical movements from autistic adults who mentored her, plays the character with a ferocity and lack of conscious ego. This is not a trick, flash performance. She makes her character absolutely alive.

The rules of conduct inside her house -- her way of maintaining order in the chaos of everyday life -- are authentic and never ridiculed in this sophisticated film, except by people who show their ignorance by doing so.

The movie's title refers to the fact that Weaver's character has a penchant for eating fresh snow.

You can read the review here.

Sigourney Weaver Plays Autistic Woman in "Snow Cake"

Discussing her latest movie "Snow Cake," Sigourney Weaver (pictured at left) tells Now Magazine in Toronto that while she plays a woman with high-functioning autism, it's not an autism movie. (See the article, published this week, here.)

"Autism is part of one of the characters, and it's just presented as a fact. It's not the subject. The subject is really connecting versus not connecting.

"In a way, I don't know how you'd sell this film. It's such an original story. The writer, Angela Pell, has a son with autism, and she said living with someone with the condition is heaven and hell. I want people to see the heaven, but I also want them to see what hell is for the person."

When the interviewer asks Weaver about the possibility that "Snow Cake" will become known as "the Sigourney Weaver 'Rainman' movie," she answers that Dustin Hoffman was brilliant in that Oscar winning movie. Then she adds: "But there was a real desire on everyone's part that there should be more depictions out there than just Rain Man."

Snow Cake is a small independent production that is slowly making its way around film festivals in New York, Los Angeles, Berlin, Edinburgh and Toronto, seeking a major distributor. That it appears most of us will have to wait until it comes out on DVD to see it signals that it won't be displacing Hoffman's 1988 performance as the popular culture archetype of a high-functioning autistic person.

Reviews of the movie, which also stars British actor Alan Rickman, have been positive. This review from the Tribeca Film Festival in New York calls Weaver's performance "astonishing. "

Snow Cake may not be a blockbuster, but the experience of portraying someone with autism made a deep impression on Sigourney Weaver. She told the BBC earlier this year at the Edinburgh Film Festival that she spent nearly a year researching autism and understands it's useless to speak in general terms about people on the autism spectrum. "It's a huge condition and there are about as many different manifestations as anything you can think of. The more I learned about it, the more I felt it was impossible to generalise," she said.

Photo courtesy of Discovery Channel, via NewsCom.com.

The Strange Tale of a Good Fence and a Bad Neighborhood

The Rocky Mountain News today told the story of a Littleton, Colo., family suing their neighborhood association to keep a fence so that their autistic son wouldn't run away. I read this story -- you can see it here -- and wondered: Of all the problems parents and families have, struggling to find the right supports and services so their kids with autism can make gains; with all the effort it can take to do simple family things others take for granted, like going out for ice cream or attending a worship service; with all the uncertainty about why the incidence of these disorders are rising, and what we can do to understand it, unlock its causes, treat its symptoms and seek solutions; with all the unanswerable questions about what the future holds, next week, next year, way ahead when mom and dad aren't here to help. With problems these children face, like the Little League baseball coach in Pennsylvania who offered money to a youth to throw a ball to injure an autistic boy so he couldn't play, or the parents in Connecticut who today urged limits on what kinds of physical restraints school staff can use.

With all of that to worry about, this family has to fight for a fence to keep their kid safe?

The Colorado newspaper said autism experts advised the parents of 8-year-old Fletcher Illig to install the fence after he had been discovered wandering around his neighborhood, entering neighbors' homes, jumping on their beds, turning on their faucets. (The story also notes that the boy accidentally knocked over a halogen lamp that caused a mattress to ignite, and required fire damage repairs.)

The tan cedar wood fence is six feet tall and replaces a four-foot edition that didn't keep the boy in his own yard. Unfortunately, the Illigs live in an area where there's a neighborhood association leadership that wants the family to take the fence down so the association can approve its design. The Illigs say they gave notice to neighbors that they erected a fence similar to those of neighbors (one difference: theirs is tan, others are darker colored). They got Medicaid to pay for it. Then they got a letter saying the fence wasn't approved.

Maybe the story is more complicated. Maybe the neighborhood leaders believe the principle of upholding their authority over fence design is more important than showing some sensitivity to this family. Maybe that idea of who's in charge of fence aesthetics is more important than fixing a problem that could lead to some big liabilities, legal and financial, if something heaven forbid happens to the child. I hope it's simply a misunderstanding that gets solved with some easy-to-find compromise.

Like, maybe, paint the fence. We've got more important things to worry about.

The Concept of Parents As Special Ed Law Enforcers

Parents are the ones who must stand up for their kids to enforce the law, and parents are the ones who must organize to make changes in school systems to help children with disabilities, according to legal advocates Peter and Pamela Wright. The Wrights form a potent tandem as special education lawyer and advocate who produce books, workshops, the Wrightslaw website and e-mail newsletters today posted the transcript of a recent interview they gave to an organization called Smart Kids with Learning Disabilities. You can read the transcript here.

It's interesting reading for parents (just over 5 pages on the printout I made). First, there's a back story here for Pete Wright's advocacy: his dyslexia was misdiagnosed as a child, and it was through his parents' efforts and his dogged work with a terrific one-on-one tutor (including summer school) that he learned to read, then excelled at it.

Second, the Wrights share their views on general trends:

• In the courts: the Supreme Court appears to be swinging negatively, that is, toward restricting the rights of disabled children. On the other hand, a number of judges have written well-reasoned decisions that spell out the clear legal rights of disabled kids and their families. Peter Wright doesn't mention specifics, but his past writings on court decisions would point to two autism-related decisions in federal court in Virginia. Read more about those here and here.
  
• In schools, in general, the Wrights say they see less affluent districts as more receptive to seeking expert help in the critical task of training special education and classroom teachers.
  

Peter Wright says, "The real catalysts for change are parents. Parents are the enforcers of IDEA, the special ed law." (IDEA stands for the Individuals with Disabilities Education Improvement Act of 2004.) Pam Wright adds:

"Parents represent their children's interests so, in effect, they are the consumers of services. And it doesn't take an army of parents to begin to educate school board members and superintendents -- or even to run for school board, and change the system at that level. ... By the time you get 10 people together, you are becoming a powerful group. By the time reach 25 or 50, you are a powerful organization and 'we'd better meet with you.' "

Study in Kentucky, Indiana, Evaluating Collaborative Teaching Model for Autistic Children

A three-year study is underway in 11 counties in Kentucky and Indiana to evaluate an autism education model that seeks to use a consultative model to train classroom teachers to work with children with autism spectrum disorders. The study, funded by a $450,000 grant from the National Institutes of Health, involves following the progress of kids from 20 different families. The Louisville Courier-Journal yesterday reported about this research into the model, called the "Collaborative Model for Promoting Competence and Success" in yesterday's newspaper. You can read a copy of the article, "New teaching method may aid autistic students," by clicking here.

Lisa Ruble is a psychologist and autism researcher who directs a program at the University of Louisville called the Systematic Treatment of Autism and Related Disorders (STAR). She wrote short paper describing this approach which you can read here.

This paper, which covers some issues like social interactions and conversational skills that a child with autism often needs to acquire, would be good background reading for parents who are just learning about the issues that they will need to discuss when they go to set up an individualized education plan (IEP) for their child in school. However, it's unclear how this model of providing consultants to train teachers would work for a broad array of teachers, not to mention a broad array of autism cases, without more time and resources devoted to training the teachers -- and more hands-on help and supervision for them in the classroom than is described here. In other words, the goals are good but the plans for making it work appear rather thin. It will be interesting to follow up after the study period ends in 2008 to see the results.

It's also interesting to note that the Courier-Journal article quoted a co-founder of an autism services group called Turning Point for Autism, which is affiliated with the Center for Autism in Tarzana, Calif., and provides applied behavioral analysis services to children on the autism spectrum. Betsy Gibbs told the newspaper that ABA is a method already shown to help kids learn. "Sometimes you don't want to reinvent the wheel," Gibbs told the newspaper.

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.

Notes on Community Outings

I've updated a previous article about planning community outings with a child who has an autism spectrum disorder. You can read the article here.

Nominate Top Autism Advocates for 2006

Just a quick note to say Autism Bulletin is still accepting nominations for top autism advocates of 2006. Post a comment citing your nomination, who and why, on this blog. Or drop me a note at michaelsgoldberg AT yahoo DOT com. Please do it by December 10.

Nominations so far include: Doug Flutie and his foundation; author and advocate Susan Senator; all the parents of kids with autism; the sponsors in Congress of the Combating Autism Act; the Wrights who spearheaded all that NBC TV coverage of autism and founded Autism Speaks; autism bloggers from around the world; and more. Post a comment or drop a line to add your nomination. And thanks.

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.

In Praise of Nick Hornby

Nick Hornby is a British writer mainly known in the U.S. for movies based on his books. Films like High Fidelity, About A Boy and Fever Pitch have made him a very successful author. It wasn't until a recent controversy in British politics, in which a leading politician made an insensitive joke about someone having autism, that I learned Hornby is the father of a son with autism whose family helped start a special school for kids on the autism spectrum in London called TreeHouse. During that controversy, Hornby spoke out against the insensitive remarks the politician made; it's not the first time he's done this.

Hornby's introduction to "Speaking With The Angel," a short story collection he edited, dedicated to his son Danny, and for which he donates part of the proceeds to TreeHouse and other autism programs, is one of the more powerful pieces I've read about what it means to be the parent of an autistic child, and just how important education programs and teachers are. You can read an excerpt from the introduction by clicking here. Here's another:

How do you educate severely autistic children? How do you teach those, who, for the most part, have no language, and no particular compulsion to acquire it, who are born without the need to explore the world, who would rather spin round and round in a circle, or do the same jigsaw over and over again, than play games with their peers, who won't make eye contact, or copy, and who fight bitterly (and sometimes literally, with nails and teeth and small fists) for the right to remain sealed in their own world? The answer is that you teach them everything, and the absolute necessity of this first-principles approach makes all other forms of education, the approaches that involve reading and writing and all that, look quite frivolous. Danny has to be shown how to copy, how to look, how to make word-shapes with his mouth, how to play with toys, how to draw, how to have fun, how to live and be, effectively, and TreeHouse utilizes a system that makes these elementary skills possible. Danny's education began with him learning how to bang on a table when prompted to do so, a skill that took him weeks to master. What's the point of that? The point of that is hidden in the phrase "when prompted to do so": only when a way has been found to penetrate the autist's world can any progress can be made, and now Danny listens. He can't understand everything he hears, but at least there is now a sense that for some parts of the day-- and for most of the school day -- he occupies the same world as his teachers and his peers. ...

All parents of autistic children know the terrible cycle of guilt and apathy that comes with the territory: our kids are capable of entertaining themselves for hours at a time if we let them (and sometimes we do, because we're tired, and maybe despondent), but we know that the entertainment of choice -- spinning round and round, lining things up, watching the same videos over and over again -- is not healthy or productive. But few of us have the energy to do what Danny's teachers do. We cannot create scores of different activities each and every day, all of them designed to equip our children to cope better with the lives they are living now, and will live in the future.

One Gift Idea for Parents of Kids with Autism

What to give parents? Time.

Time off. Time alone. Time together. A "date night" or "date day," it does not matter. It could be a regularly scheduled time, or not. It could be whatever works, and when. (If babysitting is a challenge, for example, you could take a vacation day while the kids are in school and go to a movie matinee.)

One suggested activity for this time: that it has nothing to do with autism. No discussion about evaluations or individualized education plans, or services or therapies or schools, or advocates or anything related to developmental delays.

What to do: something that requires getting out of the house. Go to a movie, or a museum. Eat at a restaurant. Take a walk. You don't have to go far. Just go.

One potential outcome: There are several, actually. It's possible that parents could find a moment to relax. It's possible that if mom and dad go out together, they will reconnect on a different radio station than what's routinely buzzing at home. They could discover something enjoyable, like that movie mentioned above. And, depending on the parents and how long the respite is, they could realize that they miss their children and want to see them again.