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.


Anonymous said...

Thank you for this comprehensive list -- and congrats to everyone on it for all of their hard work to help our kids. It helps to know we're not alone.

Anonymous said...

Mike Bernoski is my husband. I'm very proud of what he has done as an activist for autism. I am very proud of what he does everyday to support our wonderful son. God Bless all of these people for their roles on assisting this very important cause.

jypsy said...

I nominate my son, Alex Bain....

kristina said...

I'm very excited to see the Fremont Center nominated---we visited it in December 2006 and it's a welcoming place.