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?