Re: Autism

5-24-09

Ref:   Growing Old With Autism by Karl Taro Greenfeld - NY Times http://www.nytimes.com/2009/05/24/opinion/24greenfeld.html?pagewanted=all

This article just breaks my heart.  It is so true.  My elder son is high-functioning autistic, now in his mid-forties.  When he was a child there was very little awareness of, or advocacy for, autism.  In fact, we could not even get the staff of Bradley Hospital (a psychiatric hospital for children) even to use the word "autism."  "We do not put labels on things" they smugly told us.  It was, and continues to be, an unending, frustrating, heartbreaking struggle against professional hubris and ignorance, and societal indifference.

When he turned eighteen he made the instant transition from being a troubled child, with some level of state funding, and thus an object of tsk-tsk pity, to being a troubled adult with an intractable long-term disability and no umbrella of protective legislation.

This society does not deal well with long-term intractable problems of any kind.  Be they economic, psychiatric, social, or medical.  We prefer what I call "the little-girl in the well syndrome."  That is, little Mary falls into a well in Minnesota, and CNN and the media obsess about it.  Smarmy talking heads keep us minutely informed about the progress of the rescue, and a Little Mary College Fund quickly grows as contributors send money and teddy bears.  And then it's over - - little Mary is rescued or she perishes. 

And, having had this wonderful emotional catharsis, people quickly go back to their ordinary narrow lives, feeling at  one with God, and the media go on to the next crisis du jour, be it a mine cave-in, an airplane crash, a domestic shooting, or whatever.  We skip from Nancy Grace to Larry King, voyeurs of private grief, clucking sanctimoniously as the crassly commercial entertain the emotionally insatiable.

But my son, and the person described in the NY Times article, simply are unwanted, expensive, unattractive, complications in a society that wishes they just would go away. There are no political advantages in spending public money on difficult, long-term projects that are unlikely to bring acclaim to the senator or congressperson who proposes them.  That, by the way, is why our infrastructure is crumbling.

Of course, the downside of autism, which no government official will admit, is that autistic kids do live long lives, unlike some other afflictions that have the social decency to be self-extinguishing.  But not autism, not schizophrenia, not the horrific list of auto-immune disorders, not the blind, not the deaf (have you checked the obscene cost of hearing aids?), not young men and women with double prostheses because their legs were blown off in Iraq - - not any of the long, sad list of intractable afflictions into which we grudgingly pour public money while the drug companies and private health-care organizations strengthen their unholy alliances with state and federal legislators.

And now we see the rise of a new class of pseudo-medical fat cats - - the Professional Advocates of Autism.  The federal Department of Health and Human Services has characterized autism as a “disorder of childhood”, as though when autistic children reach legal maturity (typically eighteen) they either will be miraculously cured or they just will dry up and blow away.  The  medical/psychiatric establishment and the Congress have narrowly defined autism to their political advantage (i.e., to touch our hearts and open the public purse), but that definition also determines the boundaries of political and legislative awareness and responsiveness, and determines who will make a great deal of money in the near term, only to turn their backs on the problem in the long term.

Atuism appears to be the Swine Flu of childhood afflictions.  It is fashionable, with powerful advocates both in the public and private sectors.  But in my view what will happen is similar to what happened when some foolish president (Nixon??) agreed with the psychiatric fashion of the day and emptied our psychiatric institutions. He returned all those distressed individuals to ordinary society, blandly assuring us that everything would be OK, and that those folks simply would show up at their local health-care providers and get their daily meds.  With miraculously perfect personal discipline and responsibility.  It was an ill-conceived solution to a very difficult problem.  The reality was disastrous.

So now we have a "disorder of childhood" that somehow cannot be seen as a "disorder of people."  Defining a disorder as peculiar to childhood has profound, but not at all obvious, implications for funding, for enabling legislation, for boundaries on how and where funding will be allocated, and how and where it will be spent.  That "childhood" constraint can be, and doubtless will be, a Pandora's Box of pain and frustration when the parents of all those "children" discover that their kittens have become cats, and have fallen out from under the protective legislative umbrella.  As did my son many years ago.

Clearly, there is little Establishment money to be made by addressing the numbing, grinding daily family stress of dealing with a live-in autistic adult.  No headlines.  No profitable federal grants. No journal articles. No light at the end of that interminable tunnel.  Perhaps there actually are families, parents, siblings, who are so close to God, so invincibly spiritual, that they can deal with this and maintain their inner peace, there sense of Divine Justice, and their marriages.  But for many (most?) of us the relentless pressure is immensely destructive. 

As the playwright Chekov wrote, "Any idiot can handle a crisis. It's day-to-day living that wears you down."

Now, of course I do understand that effective, early intervention will be immensely beneficial to autistic kids, and that the probability of remission goes down as the individual grows older.  So of course I applaud and encourage the growing awareness and focus on early treatment.  But I also am profoundly cynical about that "1 in 150" incidence of autism. 

Some years ago there were endless drug company advertisements showing a mildly troubled-looking college student (invariably female) with the message: "Help her adjust to the stress of college by taking Soma...."   In other words, normal adjustment to life's ordinary stresses is addressed by taking drugs rather then by the ordinary process of maturing.  That seems to have fallen out of fashion, and we don't see as many signposts urging people to travel down the Yellow Brick Road to Ellaville.

The fashion du jour is autism.

I believe that we are building another short-term, politically expedient, boondoggle, one that will enrich an entirely new crop of anointed pseudo-medical predators, instead of devising a thoughtful, rational, long-term approach to what really is an intractable, long-term problem..

Bob Richardson