A view of autism from along the spectrum

This week, Lee took MJ and SJ on a short visit to a friend of a family member. The woman they visited knew that both boys were on the spectrum. During the visit, the SJ asked the woman for a drink of water. While in the kitchen, she asked SJ if she could “Say a prayer over him to help him get well.” SJ promptly replied, “No, thank you” and returned his attention to his drink.

When Lee told me what happened, I laughed at both the well intended, but misguided, efforts of the hostess as well as SJ’s perfect response. SJ demonstrated exactly the kind of self advocacy that I want all of my kids to have. He was direct. He was polite. I don’t know exactly what he was thinking when he heard the request. It’s safe to say that SJ did not stop to ponder the question of whether or not his autism makes him not well. I’m sure his response was not based on the concept of neurodiversity. I expect that his motivation was much more simple. Nonetheless, he was direct, and he was polite. I can think of a better way to start advocating for what he wants.

Wade’s recent post on the Combating Autism Act got me paying more attention to this often discussed (except in House of Representatives) piece of legislation. After ranting a bit in the comments to Wade’s post (Sorry Wade, I’ll keep future rants on my own blog!), I paid a little more attention to what has been going on.

I was pleasantly surprised at the amount of information that was so readily available. I was able to see Rick Santorum and Joe Barton on CNN via YouTube. I heard an interesting interview on my iPod. Heck, even the House and Senate have a wealth of information on-line. I was unpleasantly not surprised at the state of politics I found therein.

Growing disillusioned while conducting my research, I thought back to a time when politics wasn’t so petty and ego driven. To a time when people in Washington cared about doing what was right. To a time when people not only did the right thing, but also engaged in witty banter while walking down hallways. Yes, I thought back to a time when Aaron Sorkin was writing weekly episodes of The West Wing. To a time when 44 minutes of drama was enough to resolve political gridlock (88 minutes over two weeks for a particularly difficult issue). My thoughts eventually took me to this question: What Would Aaron Sorkin Do?

Now I’m no Aaron Sorkin, but I can’t help but think of a few scenarios that he might use to address the current situation. Since he’s a little busy with another writing gig, I’ll pass them on without his review.

• In a last minute attempt to save face, Rep. Joe Barton holds a press conference. He states that he sent an email last week to his entire committee indicating that he is willing to release the Combating Autism Act for a vote but no one replied. Senator Ted Stevens joins Barton at the press conference and goes on to explain that the email was never delivered because the internet tubes are clogged. The committee agrees to release the bill to vote as long as Senator Stevens agrees stop referring to the internet as a “series of tubes“.
• Sorkin updates the story from The West Wing season 2, episode 17, in which an elderly Senator filibusters in order to get a bill passed with money for autism research. In the West Wing version, Senator Stackhouse from Minnesota reads recipes for 8 hours, preventing the Senate from adjourning for a weekend recess. As the filibuster eats into the weekend, the White House staff realizes that the Senator has an autistic granddaughter and rounds up support for adding the autism research money to the bill. Sorkin would make some adaptations as House rules preclude a filibuster. Changing the storyline to keep Barton from going home for Christmas would be interesting.
• In a third possible scenario, Representative Duncan Hunter, Chairman of House Armed Services Committee, submits a bill to the house floor for a vote. The bill allocates $1 to fund upgrades to the US military base in Qumar. Before the vote, a Fellow Californian, and Chairman of Appropriations Committee, attaches an amendment consisting of the entire Combating Autism Act.
• House Republican leaders show up in Barton’s office and tell him to let the bill go or lose their votes for any leadership position for the next session. Again leveraging the script he penned for The Stackhouse Filibuster, Sorkin has President Bush, within earshot of reporters, saying of Rep. Barton “He’s a curmudgeon. A grouchy old crank,” The House leaders and President Bush also force Barton participate in the annual Big Block of Cheese Day. He is assigned to sit down with Mike Bernoski and actually listen to what he has to say.
• In my last scenario, Barton realizes how out of touch he is and releases the Combating Autism bill. In a press conference he says “If 244 Representatives cosponsored the Combating Autism Act and only 14 cosponsored my NIH Reform Bill, maybe something is wrong with the bill or my politics.” Nah, that one is too idealistic for even Sorkin.

I made the trip to NYC yesterday to attend the Autism and Advocacy conference that Jim Fisher organized at Fordham University. It was an incredibly uplifting day. Both the speakers and participants reached out to each other throughout the day and I felt a sense of community moving through the group as if it were contagious. It began before the conference as Jim struggled to move the community from one room to another to start the presentations. It continued long after the conference was over, even as the staff was breaking down tables at the reception. For me, it even extended to train back to Connecticut. It was the first time that I literally broke bread with friends on a commuter train. Looking back, I see how that symbolism was consistent with the rest of the day.

I’m thrilled that I was able to grow some relationships and start new ones. After meeting Kim and Sara earlier in the week, I am grateful for the opportunity to get to know them better. Sharing our experiences as parents helped us connect and exchanging Monty Python quips while dodging buses in the middle of 42nd street didn’t hurt either. I found out that Mike and I work in the same industry and share some common colleagues. I was also able to tell him how I saw my own son in Katie’s eyes. I had the chance to talk to Kassiane again and meet Scott who hails from my alma mater Penn State. I shared perspectives with Joe and wish I had the chance to talk with him more. I met Kristina and Jim, even if we could only talk for a brief time. There were others, and although I may not have learned or remembered their names, the sense of community was still there.

Some things that are contagious are good for us. Some even nurture us.

Jim and Kristina, thanks!