Notes on Community Outings

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

Nominate Top Autism Advocates for 2006

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

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

Combating Autism Bill Scheduled for House Vote

The House is expected to pass the Combating Autism Act on Wednesday, Dec. 6, after the Texas congressman who had blocked the bill reached a compromise. That's according to a brief statement by an umbrella group for 20 autism advocacy and support groups called CombatAutism.org. After that happens, the Senate would need to vote on the bill on Thursday. Then the bill would go to President Bush.

The House version, while not as strongly favored by autism advocates as the version the Senate passed in August, still would allocate about $945 million for research and support services on autism spectrum disorders. This story posted tonight by the McClatchy Newspaper chain explains that Joe Barton, the Texas Republican who's the outgoing chairman of the House Energy and Commerce Committee and had opposed the autism bill because he favored a plan to overhaul the nation's medical research institutes, worked out a compromise:

Barton was resistant to moving a "disease-specific" bill while he was working on legislation that affects the National Institutes of Health. The NIH bill passed the House in September, but Barton still had problems with the [Senate version of the] autism bill's focus on the NIH and the stipulation that researchers study environmental factors that autism activists maintain trigger the disease.

The compromise allocates funding to NIH but directs the Atlanta-based Centers for Disease Control and Prevention to set up regional centers of excellence for epidemiological research. The bill includes environmental factors in the list of research areas to be studies, but drops the Senate-passed version's provision for $45 million in research on environmental factors.

Not everyone in the autism community will greet this news warmly. Those who were pushing to get an explicit autism-environmental research project in the bill will be disappointed if not outraged. However, even with that language missing, this is a big step forward for Americans with autism and their families. And if the president signs the bill, it will put autism spectrum disorders on the nation's agenda as a problem that needs addressing.

But even if the president signs the bill, there's still one more hurdle: the federal budget appropriations process. National Public Radio today on Morning Edition broadcast an interesting report that puts the political battle over the Combating Autism Act into a bigger context: who gets to decide how the nation spends its medical research dollars. (Click here to see a web page where you can read and listen to the report.) There's some heart-felt advocacy from Elizabeth Emken, a Cure Autism Now advocate from Danville, Calif., who asserts the government has neglected autism research up until now. But there's also this warning from Dave Moore, executive director of the Ad Hoc Group for Medical Research, which lobbies for medical research funding:

"We still have a very large deficit," Moore tells NPR. "We still have a very large war that we're trying to conduct. We still have a number of other priorities, such as homeland security, that have to be funded. So the support for medical research is going to have to be viewed in the context of these larger budget decisions."

You can see past Autism Bulletin coverage of the Combating Autism Act here.

In Praise of Nick Hornby

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

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

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

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

One Gift Idea for Parents of Kids with Autism

What to give parents? Time.

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

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

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

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