Saturday, February 26, 2011

The King's Speech

Whether the King’s Speech wins the Oscar tonight or not, it is a remarkable film.  

Colin Frith, who plays Prince Albert, was thrust into the role as King George the VIth when his father dies.  Albert has struggled throughout his life with a severe stammer.  Watching him attempt to address the opening of the Commonwealth Games in 1925 is extremely painful and brings tears to your eyes.  One can’t help share his sense of humiliation.  

Prince Albert’s wife Elizbeth, played by Helena Bonham Carter (you may have seen her in A Room with a Viewfinds an unorthodox Australian speech therapist,  Lionel Logue, played by Geoffrey Rush, to help overcome Bertie's stammer, with no one, even Lionel's family, aware that the King is receiving speech therapy.  Lionel and Bertie's relationship is often strained as Lionel believes it is necessary for the two to be equals during their therapy sessions, with Lionel calling him Bertie instead of your royal highness, which ruffles the king's feathers, since he is not accustomed to such informality with a commoner. 

Lionel is strikingly perceptive, recognizing the anger and humiliation associated with the King’s speech challenge, and helping him overcome it by shouting profanity at times of greatest frustration, which the King does with gusto, to great humorous effect. In time Lionel become Bertie's friend, as Lionel attempts to uncover the psychological issues behind the speech impediment.  

Anyone who has ever feared addressing a problem in their life (who hasn't?) will empathize with the King’s dilemma, and every therapist or helping professional who has assisted a client or patient in overcoming such a challenge will love the film.  The culmination of the film occurs when it is necessary for the King to address the nation on radio announcing that England has declared war on Germany in 1939, which he does nearly flawlessly.   Lionel is in the broadcasting booth giving the King encouragement. Everyone feels like cheering for the young King.  It is a very moving film and the acting by all three main characters is wonderful.

Saturday, February 19, 2011

We're Number One?

 We have all seen the people at sporting events with their faces and bodies painted green, purple or red, thrusting their index finger into the air, screaming “We’re number one!” even though their team eventually loses the game.  NY Times columnist Charles Blow published a piece today (Sat. Feb 19, 2011), “Empire at the End of Decadence,” writes “Not only are we not No. 1 — “U.S.A.! U.S.A.!” — we are among the worst of the worst. Yet this reality and the urgency that it ushers in is too hard for many Americans to digest. They would prefer to continue to bathe in platitudes about America’s greatness, to view our eroding empire through the gauzy vapors of past grandeur.”  Fellow Times editorial page writers Paul Krugman and Thomas Freedman have expressed similar concerns. 
Being number one at something involves more than proclaiming it to be the case.  The US has had the largest redistribution of wealth to benefit the top few percent of its population of any country in the industrialized world over the past 30 years.  Money that should be going for jobs for working middle class Americans is being outsourced all over the world so the rich can get even richer.  Money that should be spent on rebuilding American infrastructure that was at one time the envy of the world, is going to line the pockets of the wealthiest few percent of the American people who refuse to pay their fair share of taxes.   The US built the first national railroad and interstate highway systems, created hydroelectric dams to provide electricity for entire regions of the country, developed some of the most important cutting edge medical breakthroughs to improve the lives of Americans.  Today our highways are severely out of date, our railroads are laughable compared with high speed rail services of our European counterparts, or Japan or China.  Our sophisticated medical procedures are accessible only to the most affluent Americans.  The rest must go without.  Outrageous personal and corporate greed has been reified as meritorious.
Every once in awhile we actually do something that continues to be the envy of the world. The US is one of the only countries that provide extensive access to intensive early treatment services for young children with autism.  Though there are many parts of the US where such services are limited or non-existent (especially in rural areas, in the south and mountain states), compared with most of the world, the US truly is number one.  These services became available because ordinary people, parents of children with autism and professionals joined forces and aggressively sought redress from their government, demanding reform.  Continued pressure will eventually bring those essential services to most areas of the US.
It is time Americans reared up on their hind legs are said, “Enough already!” It’s time the rest of us benefit from the wealth of the nation, not only the very richest few.  Those wealthy bankers and hedge fund managers who almost brought the nation to its knees leading to near financial collapse in 2008 are seeking even more ways of fleecing the American people and avoiding taxes. They learned nothing from the Great Recession of 2008. 
 The teachers, police officers, fire fighters and other union members in Wisconsin are doing just that, they are telling their radical governor that undermining collective bargaining will not be tolerated. They are standing up for what is right.  That is one of the only tools ordinary Americans have to assure that they have access to their piece of the national pie.
While the Tea Party members of the House of Representatives are pursuing a slash and burn approach to funding for fundamental social programs that provide the safety net for middle and other working class Americans, and programs to which they object on political grounds (like Public Radio and Television and Planned Parenthood) and have expressed no interest in rebuilding American infrastructure.  Indeed, they plan to cut critical infrastructure spending.
They seem to have no ability to see that without investment in American infrastructure, education and adequate health care for all Americans, our place in the world will continue to slide.  The American Society of Civil Engineers 2009 Report Card for US Infrastructure, which covers areas such as bridges, dams, energy, rail, roads, schools and transit, gave the US a an overall grade of D for 2009.  The highest grade was for solid waste, earning a C+ while drinking water and wastewater earned grades of D-.    Highways, bridges and rail earned Ds.   America invests 2.4% on infrastructure compared with 5% for Germany and 9% for China.  Talk about priorities.
 I have given up on the idea that any adults remain in the Republican Party. I would like to see a modern day Lowell Weicker or Jacob Javits emerge to play a leadership role in the party.  Instead we have John Boehner and Mitch McConnell, throwbacks to the likes of John Tyler or William Henry Harrison of the Whigs, who would make welcome additions to the Tea Party caucus.    

Saturday, February 12, 2011

Did Grandpa Have an ASD?

My first wife’s father was something of a mechanical genius. He was exceedingly bright in some ways.  He designed and built an array of mechanical devices, always with great precision. He found it beyond belief that there was anyone that did not adjust the timing on their car’s engine themselves.  He was also a perfectionist.  Nothing he or anyone else did ever seemed quite right or good enough to him.  He was always dissatisfied.  He was also devoid of humor, at least humor that most people understood. When jokes were told he often acknowledged that he “didn’t get it.”  He was very literal.  

He was exceedingly fastidious.  His work shirts and pants had to be ironed just so or he had his wife to re-do them.  The shop where he built those remarkable devices that he invented looked more like a laboratory than a mechanical shop.  There was zero clutter, all floors were devoid of dirt, oil stains or any spots that one expected to see in a workshop.  All tools were stored unless they were being used at that moment. Nothing was left out on workbenches.  He was preoccupied with everyone’s following rules exactly as specified. He had a habit of driving in the outside (passing) lane on interstate highways exactly at the speed limit so cars couldn’t pass him at higher speeds.  He was disgusted with the highway patrol’s not rigorously enforcing the speed limit.  It was impossible to reason with him.  Once he had an opinion about anything, there was no changing his opinion. He often perseverated on a topic, seemingly endlessly, and did not notice that others were disinterested.

His great grandson, my grandson, has moderate to high functioning autism spectrum disorder.  There is strong evidence that autism and autistic traits run in families. There is a recurrence rate in families of about 5-10% with siblings, though some forms of autism are more heritable than others.  His own children did not have autism traits, though there were mood disorder symptoms in the family, so apparently the condition skipped a generation.  Today, Grandpa might very well be described as having Asperger disorder, but of course we’ll never know. John Constantino at Washington University in St.Louis finds that autism traits are widely distributed in the population, but only people with genetic predisposition express them.  Judith Miles’s work at the University of Missouri indicates the heritable form of autism (Essential Autism) with a recurrence rate in relatives of 20%. Makes me wonder how many families included members like Grandpa in years past and who are now being diagnosed with an ASD.  I’m guessing it was pretty common.  

Would I have felt differently about my often very difficult father-in-law had I been aware of his probable Asperger disorder?  Probably, but we'll never know that for sure either.

Thursday, February 3, 2011

Chop, Chop: Stand Up & Be Counted

 Forty-eight of 50 states currently have (or have had) significant budget shortfalls.  As anticipated, among the most severe cuts to compensate for these deficits are in services for people with developmental disabilities, including autism. It appears the cuts are most severe in Red states, like Texas (13,000 people lose Waiver funding), South Carolina (25% budget cut), Arkansas ($3.6 cut in health benefits) and Arizona (cutting health care for 280,000 Arizonans).  Blue states aren’t immune, with New York’s governor proposing a 10% cut in developmental disability service funding and Governor Brown in California proposed a draconian $12.5 billion in cuts to disability services.
An email report forwarded by the ARC USA indicated that disabilities “advocates in Indiana reeled from incoming reports that Indiana’s budget crunch has become so severe that some state workers suggested to families that they leave their family members with disabilities at homeless shelters.

While the Indiana Bureau of Developmental Disabilities Services (BDDS) officially said this is not the agency’s policy, parents were told this was one option when families can no longer care for children at home and have not received Medicaid waivers that pay for services that support individuals living independently…. Kim Dodson, Associate Executive Director of The Arc of Indiana asserted that reports had been received of state workers in several BDDS’s eight regional offices steering families to take adults with disabilities to homeless shelters.”  Come on, we can do better than dumping our family members. What has this financial situation come to?
Recovery of lost revenue that has been hiding from the IRS, such as companies that sequester huge amounts of income in off shore banks has to be a high priority. There are corporation that pay no taxes.   Budget cuts must be more equitable.  Federal or state government cut taxes to corporations that refuse to hire American workers has to stop.  Either hire additional full time American employees or forego budget cuts. 
Families with sons or daughters with autism and other developmental disabilities will have to be willing to make tough choices.  If a group of parents were holed up in a room for an evening with a pot of coffee and a white board, I think they could come up with ways to cut corners and save money,  that would not greatly disadvantage their kids. It’s time to do that. 
Some Waiver expenditures are clearly not essential, while others are critical. If we are unwilling to make such distinctions ourselves, state agencies will do so for us and we will have no say about it.  Service providers need to find ways to more expeditiously provide services that are medically necessary, and streamline services whenever possible.  If families and service providers are reluctant to rationally address these issues, governors like Jan Brewer in Arizona will be all too willing to make the cuts without consulting you.  If she is willing to allow low income people who need organ plants to die rather than covering the cost of the procedure, she wouldn’t think twice about cutting off funding to kids with disabilities.  It is time to stand up and be counted by meeting with your elected representatives and appointed disability agency officials to propose practical ways of helping solve these difficult problems.