Autism: Year of Progress

Chris Roberts tells us our youngest grandchild will start kindergarten in September. That’s a major decision for Chris and Jenna, one they would not have made even three months ago. But this has been a year of progress for Weston. When you have a child with autism you celebrate small triumphs and this year there have been some big ones. First there was potty training (Jenna called it boot camp.) Then there was a pronounced improvement in muscle tone. His digestion got better and he tolerates more foods. He can wear a hat. He answers yes-no questions, he goes to pre-school by himself, and when they were here at Christmas he was more affectionate with his mother than we have ever seen him. Those are all important milestones.

So last week they went down to their local school to check it out. Their school district in Hoover, Alabama has a good program for autism so that’s a plus. There are two parochial schools to look at before they make their choice. It’s a happy option to have but none of them will give him everything he needs. No normal program can afford that but he will still get therapy at home too. We will be forever grateful to the dedicated young professionals who provide it.

I think a lot of his improvement is because he feels better. That’s true with any child of course but those with autism tend to have more medical problems than most. It is a constant topic in autistic circles and I’m surprised I don’t see more about it in the main stream literature. Even the CDC’s web site fails to mention that, focusing entirely on behavioral and communications disorders. Most children with autism have other symptoms. They have chronic diarrhea, or constipation, or recurring bouts of both. They are hypersensitive to pain or noise, or are insensitive to them. They have allergies, arthritis, sleep dysfunction, and a whole range of other ailments. They don’t all have everything but most of them have something. Weston had stomach cramps, no serious diarrhea but always a very loose stool and something called leaky gut syndrome that caused him to have a distended belly. To his parents it seemed every time they managed to deal with one thing something else cropped up.

Weston’s digestive problems have cleared up. His parents attribute it to two years of the Specific Carbohydrate Diet, and to a food supplement they recently started using as part of a glyconutrition program. Like a lot of things parents of children with autism try, not everyone thinks the latter is a good idea. Only a few physicians recommend it but the things they do recommend often don’t work. Within three weeks Weston’s stool was normal for the first time and his belly shrank to that of a typical five year old. There is no question he feels better, looks better, and is responding much better in his therapy. You get used to that sort of testimonial if you spend much time around autism.

Weston will still be five when school starts, the normal age for kindergarten. The plan was to hold him back for a year. That’s not unusual these days, especially for boys but Mom and Dad think he is ready so they are ahead of schedule. Their dream remains for him to become a typical child. That hasn’t happened, not yet, he is still not conversational and he has to think before he speaks but he is getting there. Count us among the lucky ones and remember us in your prayers.

Too Fine a Point

I wish he hadn’t said that. The Dallas Morning News quotes Collin County Assistant DA John Rolater saying “(Michael Blair) is the one who needs to prove that someone else did it.” This after DNA testing proved false all the principal evidence used to convict Blair of the 1993 murder of little Ashley Estell. With what’s left no responsible prosecutor would charge Blair with the crime, no reasonable jury would convict him, and no conscientious police force would stop looking for the killer. Rolater is saying the state’s only responsibility now is to see that Blair’s death sentence is carried out as expeditiously as possible, to resist vigorously all efforts to chip away at the case that convicted him, and to insist the few remaining shreds of evidence are enough to prove guilt beyond a reasonable doubt. He sounds like the drunk with the punch line “that’s my story and I’m sticking to it.”

I suppose he is right legally. In our system once an accused has been convicted the burden of proof shifts. He is now guilty until proven innocent. But to most of us there is more to it than that. We still expect the state to see justice done. When it becomes apparent or even questionable that the wrong person has been convicted of a crime the state has two moral obligations. One is to see that any wrong to the accused is put right. The other is to see that the genuinely guilty are ultimately brought to justice. The state may get a pass on both of those under the law, but not from the people. It’s representatives will have some answering to do when they are forced finally to acknowledge they were not only wrong, that rather than do their duty they willfully perpetuated the wrong for many years while a criminal went free. They may think their duty is to the law. It isn’t. It is to justice and the public trust. Law is not always the same thing as justice. Lawyers may not always understand that but the rest of us usually do. We can and will hold our officials accountable.

This case is now more than thirteen years old. In a rush to justice it took us only a few months to bring it to trial, a few weeks to present the case, and a few minutes to return a verdict. We all share some of the responsibility for that. Public pressure on police and prosecutors was enormous. It still is. Ashley was a beautiful innocent child. Blair was a convicted sex offender and an obvious suspect. In the mug shot that appeared in local papers he looked like the sort of monster that would commit such a horrible crime. He insisted on testifying at his trial and only confirmed that image in the minds of jurors. We were all wrong. Blair probably didn’t do it.

It’s been almost seven years now since DNA testing all but exonerated Blair. The same court that took months to convict and sentence him has found no urgency in reviewing the discredited evidence. If the police have conducted any further investigation they are keeping quiet about it. The original judge retired at the end of December. His replacement asked a visiting judge to take up the case. The new officiator has until April to make recommendations to a higher court that could order a new trial. Blair sits on death row. A killer probably remains free. I wish John Rolater hadn’t said what he did. It doesn’t make me feel very safe.

Autism: Ignoring the Obvious

I just don’t see room for reasonable people to disagree on this. There has been an explosion in the incidence of autism among American children since the late 1980s, yet one analyst after another continues to posit the increase is only apparent, the result of better diagnosis and awareness. That makes no sense at all. The CDC now estimates that between 2 and 6 children in a thousand have the disorder, which occurs on a spectrum that ranges from the comparatively mild Asperger’s Syndrome to severe communication and social dysfunction accompanied by immunological and digestive problems. My guess is most kindergarten teachers would say the true rate is higher.

With current best practice any hope for recovery requires very intensive intervention and it has to begin early, preferably before age three or even sooner. Many cases aren’t diagnosed until children start school. Most with autism face a life long disability. Many will eventually be institutionalized. There’s the rub. If autism had been around all along and just misdiagnosed there would be large numbers of adults with autism in the population. There aren’t. Most people with autism are under age 21. None of the researchers claiming the increase isn’t real have looked at rates among adults. Anything short of that lacks credibility.

It’s an important issue because it clouds efforts to understand the cause. If there has been no increase the factors may be purely genetic. There are obvious genetic links. If there has been an increase there must be some environmental insult involved, a factor that must itself have become more prevalent. The question is politically charged because the most obvious environmental change is a dramatic increase in childhood vaccinations. Nobody wants vaccines to be the problem.

In the three and one half years since my grandson was diagnosed with autism I have followed the discussion with more than passing interest. A consensus is emerging but it is frustratingly slow. Many reputable scientists now concede the increase is real and there must be an environmental cause. That is new. They no longer dismiss out of hand the notion that vaccines may be involved, though few would suggest the program be seriously curtailed as some parents have. They agree that more research is needed, and not just in genetics. Some of it is self serving. A pattern of intransigence among scientists at the CDC and the NIH emerged a couple of years ago and produced a level of outrage they weren’t prepared for. It got to the point where congress was threatening to fund independent inquiries and relieve them of their oversight responsibilities. There is still some skepticism about whether the official agencies can be objective. They can’t afford to lose the public trust and it is in everyone’s best interest that they retain it. They will have to tread carefully.

There are still those who blame it all on genes. About every three months I see an article reporting a new team of researchers has found the culprit. If they have there are either a lot of offending genes, or there is a shocking lack of communication in the community. A Cambridge professor named Simon Baron-Cohen gets a lot of play for his assortative mating theory. His contention is that social misfits are more likely to have children with autism and in the computer age they are more likely to marry. I call it the geek-gets-lucky theory. The New York Times and many other august publications have given him prominent coverage. Go figure. But we’re getting there. We are going to find out what’s causing this.

Energy Priorities

The happiest person in the audience at this week’s State of the Union address appeared to be Tom Harkin of Iowa. When the subject turned to ethanol the Senator grinned from ear to ear and all but danced in the aisle. I can’t blame him for smiling. I could almost hear a band playing We’re in the Money. The price of corn doubled last year. New emphasis on ethanol means even greater demand for Iowa’s most important crop. It’s very good news in that state.

But I live in a metropolitan area where air quality and cost of transportation are bigger concerns. I don’t object to using ethanol to help reduce our dependence on foreign oil. We are all patriots aren’t we? But it isn’t clear to me that replacing gasoline with ethanol does anything for my cost or quality of living. For one thing my family spends more on heating and air conditioning than on gasoline, a lot more. Our electricity bill alone would more than pay for what we spend at the pump. I realize many people drive more than we do but still, the price of an automobile is a much larger transportation factor than the cost of fuel. I like round numbers so let’s say a $20,000 car is good for a hundred thousand miles and averages 20 miles per gallon. Put a gallon of gas at $2.50. That works out to about 20 cents per mile for depreciation and 12.5 cents for fuel. It ignores both the time value of money and maintenance costs. Have you priced a new set of tires lately?

Another thing, ethanol cost more than gasoline and gets poorer mileage. The federal government subsidizes it but if you think that means we don’t pay for it I’ve got some ocean front property in Iowa you might be interested in. Also, I’m not aware that ethanol burns any cleaner than gasoline so what does that do for air pollution?

Altogether I’d rather see the emphasis on total fuel cost and efficiency, not just gasoline. We don’t have a gasoline crisis. We have an energy crisis. Home heating oil in the North East contributes to our foreign dependence too, not just automobile drivers in Western states. Maybe we could make clean burning kerosene from lignite coal and add a little of that. Do they make catalytic converters for fuel oil furnaces? What about better roads and public transportation? This isn’t just a problem in Dallas and Houston as anybody who has driven on the New Jersey Turnpike knows. How much fuel is wasted by cars stalled in traffic? And speaking of stalled cars, when are we ever going to do something about clunkers needing tune-ups?

I was disappointed in that part of the President’s speech, but you probably guessed that. Since at least as far back as the Carter administration we have needed a comprehensive approach to energy issues. For us now to single out gasoline with passing reference to alternative sources is not enough. It may even be damaging when all things are considered. I would much rather hear a call for complete energy independence. Couple that with a serious commitment to cleaning up the air and we’d be getting somewhere. For now we are left with a catchy slogan, “Twenty in Ten.” How lame is that?

So Tom Harkin beams and I wait for a new President, not that democrats are any better. As best I can tell their “energy independence” bill consisted entirely of eliminating some oil and gas exploration tax incentives. I think I’ll write my congressman.

Who’s in Charge?

There comes a time to put disagreements to one side. When the submarine captain yells Dive! Dive! Dive! somebody had better start slamming hatches shut. That time has long since come in Iraq. The 2002 buildup for an invasion was a time for debate. President Bush made his case and the following spring rightly or wrongly went to war with broad public support. 2004 was a time to reconsider. If we were going to change leadership, that was the time. We made our collective decision. 2008 will offer another opportunity. Then we will elect a new Commander in Chief whether we want one or not. Our parents and grandparents made that choice for us six decades ago when they limited presidents to two terms.

We don’t have that option this year. Mr. Bush has decided to build up troop strength in Iraq for what he bills as a final push. Maybe it will succeed, maybe not, but the die is cast. It strikes me that the continuing cacophony of dissent is less then helpful. In fact it is extremely damaging. If our enemies in Iraq believe they have only to hold out a little longer and the Americans will withdraw they will be encouraged. If they prove to be right we can expect to pay a heavy price in coming years, maybe for another generation.

I want to believe we are all loyal Americans who want to succeed in winning the War on Terror but the display of partisanship in congress is not encouraging. Democrats chose a graceless new Senator who refuses even to behave civilly to deliver their ritual rebuttal to this year’s State of the Union Address. I am left thinking they are hoping for defeat if only to see George Bush get his comeuppance. I expect that from many members of an elitist media who long ago lost touch with their country but I don’t expect it of our elected representatives.

Maybe it’s just that many of us don’t really feel threatened by terrorists. We don’t think the war is a serious one. It isn’t a life of death struggle; not for us anyway, certainly not in Iraq. Ho Chi Minh saw that in Vietnam. He realized that what was for him an existential conflict was for us only one battle in the larger Cold War. He reckoned we would eventually tire of the cost and he was right. Our enemies in Iraq are making the same calculation.

Or maybe it’s the nature of a representative democracy to flirt with self destruction. Every American president has had his critics of course, especially in wartime. They have always been loud and they have always given comfort to the enemy. Robert E. Lee saw his only real hope for victory dashed when Abraham Lincoln was re-elected in 1864 but held out for five more bloody months, in part because a defeatist Northern press was clamoring for a settlement. Had the drunkard Andrew Johnson taken office a bit earlier there might be no United States today.

It’s true we aren’t in the sort of national danger we faced in the Civil War, or in the Cold War for that matter. Terrorist aren’t going to destroy us, though they might inflict a great deal of pain and like the dog that chases a car out of its neighborhood they might think they have put us to flight if we leave Iraq prematurely. Still, there is room for only one Commander in Chief. Once he makes his decisions further debate is not only pointless, it can be quite costly.