Saturday, December 30, 2006

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 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.

Friday, December 29, 2006

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., 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.

Thursday, December 28, 2006

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.

Tuesday, December 26, 2006

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?"

Monday, December 25, 2006

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

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?

Tuesday, December 19, 2006

Bush Signs Combating Autism Act

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

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."

Monday, December 18, 2006

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."

Sunday, December 17, 2006

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.

Friday, December 15, 2006

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

Thursday, December 14, 2006

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.

Tuesday, December 12, 2006

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.' "

Monday, December 11, 2006

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.

Sunday, December 10, 2006

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.

Thursday, December 07, 2006

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.

Wednesday, December 06, 2006

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.

Tuesday, December 05, 2006

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 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.

Monday, December 04, 2006

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.

Sunday, December 03, 2006

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.

Thursday, November 30, 2006

The Autism Numbers That Add Up to 1 in 166

Today's Wall Street Journal Online carries this important column analyzing recent research and claims about the prevalence of autism spectrum disorders in the United States. (The Journal website is subscription only, but you can read selected stories for free, including this one for a limited time. Click here.) The piece is important because it was prompted by "several skeptical readers" who said they doubted the claim that one in 166 children in America have autism. The writer, Carl Bialik, concludes that research evidence supports the estimate, but that claims that there's an "autism epidemic" are not supported.

Autism is a hot media story right now. You can search Google News for autism and come up with more than 1,000 hits any day of the week. Around the world, there are conferences, coverage of research papers, press releases. In the U.S., small newspapers profile a local school or program or educator or parent working with children on the autism spectrum. Major newspapers and magazines pick up on trends, cover court cases and political battles over funding for special education, research and insurance benefits. National magazines and broadcast outlets pick up on the big-picture of what is happening. (To read a summary of Newsweek's recent cover story, click here. To hear a National Public Radio show on autism this week, click here.) Radio show host Don Imus talks about the Combat Autism Bill in Congress. Comedy Central, Jay Leno and other entertainers host high-profile benefits that receive coverage.

With all this attention, there's bound to be a backlash of skepticism. It's easy to imagine that people who don't live with autism every day, who don't understand what's involved could start to think it's a hyped-up, overrated, problem. (Some cynics suggest that parents actually seek an autism diagnosis for their child so they can win sought-after services. If you want to get a whiff of this dynamic, check out the comments section of this Freakonomics blog entry on autism from September, but do so with the knowledge that it's anything but uplifting.)

These kinds of responses are a natural byproduct of media reports about autism. And they need an answer if a national discussion about autism is to move beyond arguments over how big a problem the nation faces and on to responses. Today's Journal piece cites experts at the Centers for Disease Control (click here and here) to back up the claim that between 1 in 166 and 1 in 500 kids in the U.S. are diagnosed with ASD.

What makes claims about the rise in autism cases difficult to substantiate is the fact that the diagnostic criteria is relatively new. It's based on the DSM-IV, the 1994 American Psychiatric Association's Diagnostic and Statistical Manual of Mental Disorders. This suggests that more children are receiving the autism diagnosis because the definition includes a spectrum of problems so that, for example, it encompasses some very verbal children who may have Apserger's to children who communicate without words. It also suggests that, as awareness of autism grows, pediatricians and doctors are more apt to recognize developmental delays that lead to an autism diagnosis. (The Journal notes this flier distributed to pediatricians from 2004.)

As parents and other advocates continue to push for more research into the causes and potential treatments for autism, and more resources for needed services and supports, look for more reports like today's Journal article, to continue building awareness. It's awareness of the problem that can lead to support for solutions.

Tuesday, November 28, 2006

The Long-Term Scope of the Autism Challenge

Money: $100 million a year, for about a decade. That's what's needed to crack the code of what causes autism spectrum disorders, and to begin the task of identifying new methods of treatment beyond what's available today. That's what Alison Singer, senior vice president at Autism Speaks, told the audience of On Point, a news and public affairs call-in show on WBUR, Boston's National Public Radio affiliate. (You can access an audio recording of the show by clicking here.) Singer's point is that government support for autism research is vital-- and that's an important component of the Combat Autism Act now before Congress. (Read background on the legislation here.)

The other message that came through on Monday's show devoted to "confronting the tide of autism" is that we've only just begun to confront the scale of the problem facing the country. That idea echoes the November 27 Newsweek cover story about the lack of services and supports for adults with autism spectrum disorders. (One of the authors of that article is on the show. Read the Newsweek piece by clicking here, or a summary of it here.)

Other highlights of the program included comments by Pat Levitt, a medical researcher in autism who is director of the Kennedy Center for Research on Human Development at Vanderbilt University. Levitt says autism research is difficult. It's challenging to understand human communication and how such skills develop in a typically developing person is tough; to understand how it works in a person with autism is tougher; and when you consider that there are more than one type of autism disorders on the spectrum, that makes it more complex. Still, he believes there's a combination of genetic and environmental triggers at work.

The show also includes questions and comments by several parents and grandparents. As a group, they keep their emotions in check. But you can hear the strain in some of their voices as these families affected by autism deal with a big disconnect: the need for help, now and in the future, and the lack of answers about what to do.

Monday, November 27, 2006

Gift Ideas for Kids with Autism

Parents who need ideas for grandparents (or others) to help choose gifts this holiday season should check out a helpful New York Times article published yesterday that explains the particular challenges kids with autism spectrum disorders have with learning through play, alone and with peers. "For a child with autism, the right kind of play at the right time is crucial," the article notes. "Play can help deliver some basic communication and life skills that may not come naturally."

You can read the article here. It includes links to a special Toys R Us catalog (at and Discovery Toys, as well as citing several toys and book suggestions.

One example: If your child has any experience with video modeling -- learning by watching what other kids do, and imitating their actions -- the article suggests looking at the DVD version of Cranium's "Hullabaloo" game, which has kids following directions to participate in the game.

Sunday, November 26, 2006

Top Autism Advocates of 2006 -- Who Made the Most Impact?

Who do you think are the people and groups who made the biggest impact for people with autism and their families in 2006? I'm compiling a list for an upcoming article on Autism Bulletin. You can send me your nominations via e-mail at michaelsgoldberg AT yahoo DOT com. Or you can simply post a comment below this article by hitting the "comment" button.

You could name individuals (maybe radio talk show host Don Imus, who kept discussing the Combat Autism Bill on the air? some parent who posted important or moving videos on YouTube? An awesome teacher? A researcher? Author? Advocate? Parent?) You could name a group, a school, a medical or research facility. Anyone you feel made a difference for the autism community. All nominations considered, but please include information about the person or organization so I can look them up or contact them to find out more.

Let me know your nominations by December 10. Thank you.

Marking the Death of Bernard Rimland, Autism Researcher and Organizer

There's a telling line in today's Los Angeles Times article about the death last week of Bernard Rimland, 78, the autism researcher who smashed the "refrigerator mothers" myth as autism's cause with his 1964 book about the subject, and later founded the Autism Society of America, the oldest and largest advocacy group.

"This was not the career path he had planned," the article notes, matter-of-factly.

Who knows what work Rimland would have pursued with his doctorate in psychology. The fact was that once he set about trying to understand why his son Mark was so difficult to reach, he embarked on a decades-long project to share what he had learned about autism, to help other parents figure out what kinds of approaches were effective. By day, he worked as a Navy researcher in San Diego, and on nights and weekends he studied, wrote, talked with researchers and offered support to other parents seeking help, as the Los Angeles paper recounts. (Read the article by clicking here.) In 1964, Rimland published "Infantile Autism: The Syndrome and Its Implications for a Neural Theory of Behavior," a book that debunked the previously reigning theory offered by psychoanalyst Bruno Bettelheim that autism was a child's response to cold, unfeeling parenting styles of some mothers.

In an article on the website of the non-profit Autism Research Institute (which Rimland founded), he describes how he began his efforts to help his son Mark, born in 1956.

“Mark was a screaming, implacable infant who resisted being cuddled and struggled against being picked up. He also struggled against being put down. Our pediatrician, Dr. Black, who had been in practice for 35 years, had never seen nor heard of a child like Mark. Neither Dr. Black nor I, who at that time was three years beyond my Ph.D. in psychology, had ever seen or heard the word ‘autism.’”
When their son turned two, Rimland's wife recalled reading in college about children with symptoms like Mark presented. He found the word "autism" in his wife's textbooks stored in the garage. (Read the Autism Research Institute's article here.) This article explains how Rimland became a big backer of Applied Behavior Analysis as a teaching methodology for kids with autism. In recent decades, Rimland established the Defeat Autism Now project, to research biomedical treatments for autism spectrum disorders. He also was a leading voice for ridding children's vaccinations of preservatives that contained mercury.

Saturday, November 25, 2006

Simple, Revealing Letters to New York Times on Autism Article

The New York Times in Sunday's paper is publishing six letters to the editor responding to a November 21 Op-Ed column "Studying Autism Isn't Enough," by the parents of a 4-year-old girl with autism. (The newspaper posted the letters on Saturday night, and you can read them online here.)

What you learn by reading these letters is that the rise in known cases of children with autism means that more families are struggling to find the right kinds of services; that the struggle is national in scope; that wealth only answers part of the challenge, because the supply of services is so short; and that the challenge grows geometrically when the children become adults.

Clearly, the authors of the op-ed, Cathryn Garland and Michael O'Hanlon, were on to something when they suggested that the emphasis on research in the Combat Autism Act now before Congress is understandable and warranted, but fails to address the whole picture.

Read the original column in the Times here. Read about the Combat Autism Act here.

Wednesday, November 22, 2006

6 Tips for Using Autism Bulletin

I've received some questions from readers of Autism Bulletin about using this website. Here's a quick review of what you can do.

1. Search. You can search the archives of Autism Bulletin using the search bar at the top of this page. It looks like this:
Just enter the text and click on "search blog" to see results of your search.

2. Comment. You can comment on any article by clicking on this "comments" word that appears beneath it. It looks like this:

When you click on this a box will appear that asks you to type in some random letters. This act prevents automated web "bots" from adding nonsense comments to this website. You can use your name or post anonymous comments.

3. Share an article with a friend by clicking on the "forward" button which appears beneath every article and looks like this:

A screen will appear asking you for your name and e-mail address and your friend's e-mail address. Click the "send e-mail" button and you're done.

4. Subscribe so that you receive new articles automatically. One way to do this is to enter your e-mail address in the box at right and click "subscribe." Another way to do this is by clicking on the orange icon which appears on the right side of this web page and looks like this:
This icon is for RSS feeds which you can receive if you have a blog reader like Bloglines, which can be a useful for keeping all your website subscriptions in one place. Click on the icon and follow the instructions.

5. Labels are useful for navigating past articles and recurring themes on Autism Bulletin. Clicking on the "Congress" label, for example, will take you to a list of recent articles relating to that subject label.

6. You can always e-mail me at this address: michaelsgoldberg AT yahoo DOT com. Send comments, questions and suggestions and I will respond. Thanks for reading Autism Bulletin.

Tuesday, November 21, 2006

Good Will Is Not Enough To Help Kids With Autism

In an Op-Ed article in today's New York Times, two parents of a 4-year-old girl with autism argue that the nation must do more -- beyond the Combat Autism Act now before Congress -- to invest in children's development so they can lead productive lives.

The article, "Studying Autism Isn't Enough," is by Cathryn Garland and Michael O'Hanlon. (Click here to read it.) She's a director at Discovery Communications, the cable TV company that runs the Discovery Channel. He's a senior fellow at the Brookings Institution, where he is an expert on homeland security, missile defense and defense policy. Here, the writers argue that the Combat Autism Act's emphasis on research into the causes of this spectrum disorder makes sense for now, but it is not enough because it can cost a small fortune (they cite their experience of paying about $50,000 per year for a preschool-aged child) to get effective treatments. They write that "You have to be lucky or rich to get proper care for your young autistic child." Luck refers to winning rare Medicaid coverage for therapies like Applied Behavior Analysis, or working for one of the few employers such as Microsoft and Home Depot which provide health plans that pay for autism-related services.

Another argument this article asserts: it makes economic sense to invest in costly therapies while autistic children are young, so that there's a greater chance they will be able to contribute to society when they grow up, rather than relying on the nation's social safety net. The authors write:

"If we do not help these children, we are essentially condemning them to a lifetime of disability, unemployment and, for many, institutionalization. On human grounds, this is tragic. But it's also bad economics. The few hundred thousand dollars needed to do intensive early intervention for four or five years — while a lot — is only one-tenth the expected cost of supporting someone for a lifetime on the dole."

Last year, O'Hanlon helped organize a special one-day conference of speakers called "Autism and Hope," at Brookings in Washington, D.C. (Click here for more information about the conference, including a transcript of panelists including Dr. Stanley Greenspan, who developed the Floortime method of teaching young children with autism.)

For recent a Autism Bulletin piece on efforts to pass the Combat Autism Act, see here.

Monday, November 20, 2006

What To Do When the Autism Diagnosis Arrives

Every family's autism odyssey is different, but most start with variations on three themes. There's the sense parents get as they observe their child that something is not quite typical about his development. There's the quest to figure out what is going on (and the hope that it's just a temporary blip). And there's some form of evaluation -- from a doctor, from a state early intervention agency, from a school district representative -- that leads to an autism spectrum disorder diagnosis.

Whether that diagnosis is classic autism, Pervasive Developmental Disorder -- Not Otherwise Specified (PDD-NOS), or another band on the autism spectrum, the instant and urgent mission of every family is to figure out what to do next., a website created by Sandra Sinclair of New York State, has created what she calls a mini-course to address this question. The outline of the course is clear and well defined and worth reading -- with the knowledge that Ms. Sinclair presents information informed by her experience parenting her young son with an autism spectrum disorder. This means that she clearly prefers certain teaching approaches such as Verbal Behavior Analysis over others (such as Applied Behavior Analysis, or ABA) and injects her views into her presentation. Even with this bias, the kind of information presented in this mini-course is useful, thought-provoking and worth reading. It comes with links to the Autism Society of America, the Wrightslaw "yellow pages for kids with disabilities" website and the Doug Flutie Jr. Autism Foundation, which have valuable online resources.

To get the course, you need to register by e-mail and then receive seven installments over the course of a couple of weeks. Here's a general outline of the course below (the e-mails come with much more information):

1. Understand the symptoms of autism, using the American Psychiatric Association Statistical Manual.

2. Get an evaluation, if you need confirmation of the diagnosis. (Editor's note: get a medical doctor's evaluation in writing.)

3. Educate yourself about various intervention options, school programs and home-based services options.

4. Examine whether you need an advocate or attorney. (Editor's note: make sure you get references from other families about the people you consider engaging.)

5. Get support. Parenting a child with autism is stressful and can lead to problems like depression. Find a support group, or make sure you get counseling help if you need it.

6. Prepare for a meeting with your school district to talk about your child's Individualized Education Plan (IEP).

7. Look for appropriate teachers and therapists.

The project is impressive for its clear public service mission, and Ms. Sinclair has built a library of podcasts where she explains her views on different therapies, for example. Her website also contains short pieces that try to get parents to acknowledge their difficult feelings -- like embarrassment in public when an autistic child has a tantrum. What's great is it's all done in a spirit of helping other parents also working to meet this life challenge. To see more clearly as they begin the odyssey.

Sunday, November 19, 2006

When Kids With Autism Grow Up

"What Happens When They Grow Up," is the Nov. 27th cover story for Newseek magazine that paints a clear, sometimes dire, picture of life for children with autism spectrum disorders who grow up without as many services -- or opportunities for support -- as they had when they were in school. If you're a parent who's wondering how to communicate with far-flung relatives and friends about the hard-to-understand challenges your family faces, this could be a magazine article to share with them.

The article uses clear anecdotes to demonstrate the challenges parents of young people with autism face -- what's it like to have an autistic teen in the house, the efforts families spend to find services and therapies to help kids with autism develop, the stresses this disability can put on a family's activities and finances. The article uses testimony from families and experts to raise pointed questions facing families as parents (also known as No. 1 Advocates) and their children grow older. What happens when services run out after the kid turns 21? Is it fair for parents to ask their autistic child's brother or sister to help support their disabled sibling? And what happens when parents are no longer around?

Newsweek points out that there are not sufficient resources devoted to answering these questions. There aren't enough housing or employment options, and there's a problem looming as the population of people with autism grows.

The article also points out that parents' work as advocates has raised awareness and money for research, and it could lead to an act of Congress. The magazine reports that the House, which has stalled efforts to pass the Combat Autism Act, could act on a compromise bill in early December.

To read the Newsweek story, click here. To read more about the Combat Autism Act and its prospects, click here. The New York Times recently wrote about highly-functioning students with autism who are attending college. Read about that here.

Monday, November 13, 2006

A Mating Theory of Autism's Roots

Simon Baron-Cohen, director of the Autism Research Center at Cambridge University in England, suggests that scientists should spend more time studying the traits of parents of children who have autism in an attempt to understand more about the genetic roots of the disorder.

In his piece "When Two Minds Think Alike," published in the November issue of Seed Magazine, Baron-Cohen says new research from his lab "implicates genes from both parents" and leads to a theory "that both mothers and fathers of children with autism (or its milder variant, Asperger Syndrome) share a common characteristic and have been attracted to each other because of their psychological similarity."

In this context, that similarity is what Baron-Cohen calls "systematic thinking," and describes people who grow up to be good at engineering, computer science, accounting and other professions that require sustained analytical thinking. When a grandparent, especially a grandfather, is in this line of work, the odds for a child with an autism spectrum disorder rise, Baron-Cohen theorizes.

He says that researchers should probe further whether autism more common in families where both parents are "strong systematizers" and whether mothers of children with autism "may be more likely to have testosterone-linked medical conditions."

This piece builds on another article Baron-Cohen wrote in The New York Times in 2005, called "The Male Condition" in which he discusses his brain research and theory that people with autism show an extreme of the profile of masculine traits of thinking systematically and not empathetically. (Read it here with the knowledge that it was published around the time former Harvard President Lawrence Summers' sexist comments about why there weren't more women in the science professions.)

Thanks to for pointing out this article. AutismLink is a non-profit organization based in Pennsylvania that provides support and information -- including e-mail news alerts -- to families of people with autism.

Thursday, November 09, 2006

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.

Monday, November 06, 2006

Going to College with Asperger's

Valerie is a math whiz who aced the SATs, but she has trouble picking up social cues, such as when her Carnegie Mellon classmates pushed her to the sidelines during a group project. (She received her Asperger's diagnosis while taking a year off from college.) But with the right supports, including a life skills coach her family hired as well as a supportive college administrator, Valerie earned her degree. She now has a retail sector job in Pittsburgh and still hangs out with her "nerdy" friends from college.

While acknowledging the big challenges facing students with Asperger's, this is a clearly drawn success story, the centerpiece of a New York Times "Education Life" magazine issue published November 5. The issue is headlined "A Dream Not Denied," and kids with disabilities including autism spectrum disorders take center stage. You can read about Valerie and other college students in the feature story "Students on the Spectrum" by clicking here. The story is about more than one young woman's accomplishments; it points out that colleges like Marshall University, Keene State College in New Hampshire, MIT, Boston University and a number of community colleges are hustling to figure out the best way to serve a growing number of students with developmental disabilities like Asperger's. For example, the story points out that:
"A top expert estimates that one in every 150 children has some level of [autism] spectrum disorder, a proportion believed to be rising steeply. With earlier and better intervention, more of these children are considering college, and parents, who have advanced them through each grade with intensive therapies and unrelenting advocacy, are clamoring for the support services to make that possible."
This article also notes that the Individuals with Disabilities Education Act requires colleges to provide some supports, but that college educators and administrators are working to figure out how much and what exactly to do. One disability specialist in Minnesota says interventions to provide social skills training at college is the least they can offer. "We would provide an interpreter to a hard-of-hearing person. Why don't we provide an interpreter [of social situations] for somebody with Asperger's?"

Other stories in this special education section describe the architectural designs at St. Coletta of Greater Washington, a school that serves children and adults with autism spectrum disorders and mental retardation. See the slide show at The Times website by clicking here. Buildings on the campus are color-coded to help students know where to go; there's a lack of nooks and crannies for kids with autism to hide out, unproductively; a sensory room for children to relax when they get overstimulated; and residential programs that teach non-verbal kids to use signs to prepare meals and food shopping lists.

The third article of note in this issue is all about college students with the developmental disability of Down Syndrome; read it (here) to see how parents of these kids work, constantly work, to help their children reach their full potential. And how some colleges are opening their doors to them, providing supportive environments.