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GP23Mar05: All About Autism

A Few Notches.  As the hyperbolic New Orleans cook Emeril Lagasse would say, Bob Wright has kicked it up a few notches.  Long a-building heat as a health issue, autism is a hit on Broadway ever since Wright, grandfather of an autistic child and General Electric’s Generalissimo for its ferociously far-flung broadcasting operations, orchestrated several specials on NBC and CNBC about it.  With this explosion of interest, the question is to discover ways of better focusing the American mind on what can be done about autism now and on what might be the most promising lines of investigation for future generations. 

NBC’s recent efforts, with links, are summed up at www.msnbc.msn.com/id/6844737, while the Washington Post’s Newsweek, which is affiliated with MSNBC, has an article at www.msnbc.msn.com/id/6994474/site/newsweek/.  Even Imus in the Morning, the grouchy Don of talk TV and radio, has gotten the message and is talking up autism.  Wright hopes that private funding for autism, now only at $15 million, will swell into the hundreds of millions, and he has launched Autism Speaks which will build an address book of afflicted children so that researchers can easily do the clinical trials necessary to advance knowledge about the disease.  (See www.msnbc.msn.com/id/7024923/.)  With all this high-powered NBC activity, it’s almost amazing that we have not heard more  thunder about autism since the February series, but the networks don’t create as many echoes throughout the country as they used to. It will be interesting to see if NBC can sustain the campaign, since the 24-hour news cycle often chops off important discussions when something more exciting comes along.    

Reading about Autism.  The materials about autism, many of indifferent quality, are scattered about the web and throughout the bookstores.  We would suggest that any parent with an autistic child start with Molly Finn’s heartfelt  review of a book that took apart Bruno Bettlelheim—The Creation of Dr. B: A Biography of Bruno Bettelheim—in which she combines the emotion of a mother of an afflicted child with a keen, incisive intelligence about the disease and its history.  See www.firstthings.com/ftissues/ft9706/articles/finn.html  

Bettleheim, a European psychologist who treated autistic children at a home/school in Chicago, was once thought to have obtained miraculous results with afflicted children.   Both his treatment and his theories are now rather discredited.  The parents of autistics came to be particularly disturbed by the fact that he blamed autism on them, particularly on the nature of the relationship of mother and child.  In their grief and fury, his detractors, such as Mrs. Finn, probably have overdone their assault on him.  Now, of course, we no longer blame autism on terrible parents: with the help of speculative genetics, we simply say you have lousy genes if you have an autistic youngster.  The truth, however, is probably a little more elusive.  The resolution of many brain complaints will probably involve some sort of felicitious integration of the insights of deterministic science, the artful, virtually poetic assertions of psychology, and even the soulful illuminations of religion.  Biology is probably not the whole story.  While we all know the part biology plays in emotion, we are only belatedly understanding the part emotion plays in biology. 

A list of the greats of autism are listed at www.autism-resources.com/autismfaq-rese.html.  Leo Kanner identified the disease as “early infantile autism” in 1943 and can be said to be as much the pioneer of the disease in this country as can be found.  At the same time in Austria (an ever fertile country in so many intellectual fields), Hans Asperger was working with less impaired autistics and published a paper identifying the disease just a year later.  It was just about this time, incidentally, that Bettleheim published his own renowned article about life in German concentrations camps called “Individual and Mass Behavior in Extreme Situations,” which was to be a major contributor to his lifelong fame, and, we suspect, to the nature of his beliefs about everything. 

Bernard Rimland deserves serious attention as well.  A researcher and parent of an autistic, his Infantile Autism: The Syndrome and Its Implications for a Neural Theory of Behavior has been widely influential throughout the autism community since its publication in the early 60s.  Like Kanner and Asperger, he held that autism is entirely biologically based, which seems true enough, even though in practice this simplistic truism dilutes useful attempts to treat the disease psychologically and behaviorally (in the absence of pills or other effective medicines).  See www.garfield.library.upenn.edu/classics1981/A1981LQ21000001.pdf and also www.whale.to/v/rimland.html

For some of the historical detail on the wide range of alternate theories about the causes of autism and other child development disorders, take a look at  www.healing-arts.org/
children.  For a considered attempt by a parent of an autistic child to build a comprehensive directory of autism resources, we highly recommend John Wobus’s www.autism-resources.
com.  And Wikipedia, which can be uneven, does a fairly good introduction to autism rights at http://en.wikipedia.org/wiki/Autism_rights_movement

Alzheimer’s and Autism.  We have been following both Alzheimer’s and autism with some care in the Brain Stem section of Global Province.  Both diseases build a wall between the afflicted and the here and now, severing ordinary connection with the world as we know it, and it’s mildly instructive to compare our progress in understanding each.   We seem to find that the Alzheimer’s community is better organized and a little more focused in its efforts to come to grips with the disease than the Autists.  In this respect, we refer you to the Alzheimer Forum at www.alzforum.org/home.asp, where you can find out who is doing what serious research on this brain disease of the elderly.  Energy and enthusiasm, however, probably run deeper amongst those who follow autism, and one can find an endless array of grassroots efforts to deal with the disease, the most recent of which we guess is Mr. Wright’s.  Hopefully his foundation will work at building a more integrated autism network and providing an infrastructure that can lead to fruitful outcomes. 

Research Askew?  That said, we suspect the research efforts on both diseases may not be properly focused.  The National Institutes of Health mandarins are, for instance, dead certain that amyloid plaque (along with neurofibrillary tangles), which Alois Alzheimer uncovered in 1906, is the key culprit in Alzheimer’s, but smart researchers at the margin are not so sure. Some think the plaque is a symptom, not a cause.  Given NIH’s money power, most of the funding is going down the plaque pit, perhaps fruitlessly.  It’s not a lead-pipe cinch that we are looking in the right places for the causes of the disease.  Similar blind alleys have slowed progress on autism. 

More worrisome these days is the fact that researchers are busy—with both Alzheimer’s and autism—looking for defective genes that may lie at the root of both diseases.  In both cases, it looks like different genes may be problematic in different patients.  We would guess that that the genetic work is not really going to pay off for 10 to 30 years, and that we should be looking elsewhere for the kind of information that will help us deal with the here and now.  Kevin Pelphrey, a developmental neuroscientist at the University of North Carolina, has said, “We really don’t know anything about the brain in autism.  There is just a lifetime of research to do.”   This is true of  both Alzheimer’s and autism: we just don’t know much, and we can over-fund research about the body’s esoteric fundamentals, at the expense of today’s sufferers, who need some answers now.  Right at the moment we don’t need to learn how weak our defenses are—we have to find out what’s put the body under attack.  Again and again, with disease after disease, we are learning that simple, old-fashioned bacterial inflammations and environmental precipitants lie behind medical conditions for which we are seeking more complex explanations.  There’s a tendency now in medicine to look for quantum mechanics answers, when Newtonian approximations will do. 

Since the incidence of both autism and Alzheimer’s has been spiraling upwards over  30 years, we would suspect its growth is not due to unfortunate adverse selection where too many gene-afflicted parents are having children.  Conservative estimates on autism now estimate that 1 out every 500 newborns is autistic (www.autisminfo.com/QuickFacts.html), but we have seen more recent counts that raise that figure to 1 out of 250.  To grasp the stupendous growth of autism, one can just study the cases reported in schools under the Disabilities Education Act (www.whale.to/a/autism_increase.html) where the numbers have multiplied fivefold in a very short period.  

There would appear to be something demonic going on in the environment.  We have a public health problem that requires the work of some medical detectives whose minds are not captives of the health establishment.  Pollution, the wrong substances in our food, or some other environmental aberrations would seem to be producing nervous system alterations at epidemic rates.  Perhaps this is analogous to Rachel Carson’s unveiling decades ago of the terrible effects DDT was having on bird populations.  Now that DDT is gone, the eagles are flying again.  Is it not possible that we need to do away with a few things in our diet, in our air, or in the composition of our homes to prevent diseases of the nervous system?   

What for Now?  Some sixty plus years after Kanner put a label to autism, we still don’t know much about it.  But, as with almost all diseases, we have found out that early detection is good.  If we can find out that a child is afflicted very early in his or her life and do stimulation exercises with him and her, then there’s hope for a fuller existence.  We need better and earlier testing, pure and simple.  That’s the hope for now.   In five years or so, we will do a lot more for the kids, if we can move away from pie in the sky research. 

Medicine’s Last Frontier.  That Alzheimer’s and autism have moved to the front of our imagination dramatically underscores where medical research and the leading pharmaceutical companies are now focused.  The brain and the nervous system are the hotspots for scientific inquiry these days, especially as the populations of all the developed countries have become more and more aged, and diseases such as Alzheimer’s, Parkinson’s, and Multiple Sclerosis bedevil the medical community.  Each one of us knows of a family somewhere that has been struck by autism or Alzheimer’s, and every one of us quiver a bit when we see the magnificient Mohammed Ali trembling with Parkinson’s.  As Mr. Wright would have it, we should be donating our dollars to autism and other brain diseases.  But we should be putting our investment dollars to work there, too.  Intelligent investing in the brain and other neurologic niches can net a pretty  penny over time. 

It’s no accident that William Safire, one-time Nixonian appartchik and the just retired columnist of The New York Times, should have gone on to a new career as head of the Dana Foundation (www.dana.org), a neuroscience outfit of some moment.  As one Zack Lynch of Neuroinsights recognizes, the brain  is where the action is.  See www.neuroinsights.com/
pages/1/index.htm and www.corante.com/brainwaves/archives/william_safire_leaving
_nytimes_for_dana_foundation.php.  Of course, by taking up Foundation work as a second career, Safire hopes to keep his own brain alive.  Long ago, as he has said in his parting column, DNA scientist James Watson told him, “Never retire.  Your brain needs exercise or it will atrophy.”   For most of us the way to keep our brain working is to keep working.

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