I read with great interest an article in the local paper about a trial screening for autism, which was administered to local one-year-olds. According to the article, of the children identified as potentially having a developmental problem, 75% were indeed so diagnosed by age three.

The first question that came to my mind concerned whether it is known if problems were later found in any of the kids who checked out as being OK in the screenings. However, the percentage raising flags seems roughly consistent with other statistics, so this sounds like a very worthwhile thing to be doing.

My next question is based on the fact that I have a 26-year-old son who had major developmental issues from the very beginning. When he was one year old, his mother and I wanted testing to establish whether he was at risk of being autistic. The doctors were unanimous in telling us that it was far too early to worry about that sort of thing. They were so unhelpful that we became alienated and sought medical care from alternative providers. A memoir I wrote about what we could and could not accomplish via that route is being published this year. At any rate, why is it that pediatricians have needed a quarter-century to get around to checking one-year-olds for warning signs, and only on the trial basis described in this article?

I’m very glad they’re doing it. But it doesn’t say much for progress that the idea is still novel enough to be written up in the Journal of Pediatrics.

UPDATE, June 14, 2011

Apparently, before lamenting the fact that it has taken this long even to do a pilot study of screening babies for developmental issues, I should take into account voices that still say screening is a bad idea.

I have a very hard time understanding how supposed experts can take such a stand. The above article in Reuters does not offer justifiable rationale. Yes, many screening tests can give erroneous results. They nevertheless have merit when the information is used intelligently. And the existence of wait lists for treatment hardly justifies further delays in getting on such lists. Just the opposite! If there must be a wait list, get on it now. If you find that you don’t need it, you can always get off.

When asked to list the various pitfalls families should try to avoid in seeking help for their kids, I sometimes mention the irresponsible things lay people post on the Internet. I must remember to mention as well the nutty contributions of professionals.

Recent autism list contributions by Teresa Binstock comment wryly on the “political benefits of diluting the definition of autism.” (That is to say, given a possibility that some aspect of modern life—say, pollution—might be causing an increase in the number of autistic children, some parties would have an incentive to try to prove that the numbers are not increasing after all.)

It’s not my purpose right now to wade into that controversy, but rather to talk about politics in general as it involves disabled kids. Because there are a great many such controversies, and while people take sides and go at one another’s throats, the kids we’re supposedly fighting about are in danger of being pushed off the stage.

There’s the dispute over whether it’s better to pursue remedies or to accept/embrace disability, which I talk about elsewhere on this site. There are more abstract debates, such as how much weight to give to genetics in explaining various disorders, and whether research in that direction is likely to make a difference. (“Politicians like genetic determinism as a theory of disease because it substantially reduces their responsibility for people’s ill-health.”) With vaccines, of course, there is the ongoing battle between “fear mongers” and “corporate shills.” When a new therapy stirs enthusiasm, some people become so wedded to the hope it inspires that they view skepticism as a personal affront. I’ve known therapists and educators espousing one approach or another who invested a significant portion of their energy in criticizing other providers whom they viewed as competition.

Although I think politics is an ever-growing—and necessary—part of the national conversation in general, I wish it didn’t intrude so heavily into the subject of how to help our kids. We cannot get away from it, however. You don’t need unusual skills at reading between the lines here to see that I too pick sides.

I suppose that means I’m as much at fault as anyone.

During the time I was looking for literary agents and publishers for my book, some of them said they liked my project because Joseph’s story would tie into the argument over healthcare reform. Presumably, they thought it would fit the narrative supporting increased government involvement.

As I see it, WATB supports the opposite conclusion. At least, the position our household took during the events described was that we had no need for bureaucrats (administrators in our HMO, for example) who were always denying access to the treatments we wanted. We needed information and professional guidance, yes, but the decision on what to do was ours. We knew we were going to be the ones living with the consequences. A lot of what we believed needed to be done for our son was not approved by insurance, and we were just lucky enough to be able to sacrifice our standard of living in order to pay for it ourselves (and to solicit donations to help pay for it). The way I see things, bean counters are never going to have the same priorities as patients.

New families coming into this sphere with young children in need of help can be forgiven if they see madness all around them. All these battles we’re fighting are relevant, and it seems to me they do need to be fought. But they are very seductive, too. While we stake out our positions and look for supporting evidence and burnish our arguments, time is passing. Our kids are getting older. New disabled kids are coming along. And nothing is changing in terms of what we offer them.

I’m fascinated by this continuing and accelerating erosion of the control that traditional gatekeepers have held over our lives. Lots of observers, with various different axes to grind, continue to write about this.

Some note that automation, in the form of interactive websites and self-service gas stations and cash registers, is adding to unemployment. Or, at least, it’s eliminating jobs that don’t add value to what others have created.

Some point to the ways in which amateur online journalists are now providing a reality check on big media, and myriad other small operators are using technology to overtake the complacent Goliaths in our world.

This trend has casualties, but I think it’s empowering.

One example: When the time arrived for me to show What About the Boy? to the publishing realm, I found myself repeatedly bumping up against literary agents and acquisitions editors who claimed to see merit in my story but feared to get behind it. Some admitted to being unable to proceed simply because my name is not a household word. The book exists anyway because I realized I didn’t need them. 

“No one is going to pick you,” Seth Godin points out. But that’s OK, since nowadays you can “pick yourself.”

In short, power is shifting from big organizations to small, informal groups and individuals.

If you are a parent with concerns about your kid, which nobody is adequately addressing, this trend is especially good.

I think the ultimate appeal of What About the Boy? is its presumption that individuals have the right, and the power, to make decisions for themselves, as opposed to letting authority figures hand them a circumscribed menu of choices.

Now, this comes with the understanding that we may not always make good choices. (By the same token, my ability to publish this book does not automatically mean I can do it well or deliver a quality product.) Eliminating gatekeepers does not guarantee success. On the other hand, how often do gatekeepers facilitate success? How often are they middle men, at best? At least, when we take responsibility, the choices and the results of those choices are ours. If we care, we will do our very best, and will enlist real help where needed. It’s true that sometimes certain desired outcomes remain out of reach. Nevertheless, choosing our own response to whatever fate sends our way makes us less a victim and more a participant in the way life unfolds.

I see people doing this daily as I monitor online discussions concerning developmental disabilities.

A lady reports that her nephew is constantly walking on his toes, and that the parents are taking him to a podiatrist. This triggers a rather well-informed discussion of what toe-walking may indicate and how others have treated the underlying cause.

One parent asks about the merits of homeopathy. Another responds, “Did absolutely nothing for us.“ The first comes back for more details. “How long did you guys try it for?”

Yet another parent complains that her child is expected to wait a full year before the neurologist can see her. I am among those who step in with suggestions, and the collected responses make fascinating reading, both about the smartest way to get in front of a good neurologist and about what to expect.

What About the Boy? describes my family’s quest for help in the days way back before the Internet was available. We took our son to a doctor who acknowledged that he had major problems, but the doctor had absolutely nothing to recommend in terms of treatment.

We insisted, “There’s got to be something we can do for him!”

“Oh, there are programs out there for children like yours,” the doctor said. “But I’m not about to suggest anything. “They’re controversial.”

“How are we supposed to make intelligent decisions if we don’t know our options?” my wife demanded.

“Talk to other parents,” was all the good doctor would suggest. And that hint started us down a very long path.

Sometimes, I think, gatekeepers don’t even want that role. I think the more intelligent ones hate to find themselves in the path of highly motivated seekers en route to an objective. They know, and we know, that if they can’t help us along the way, they’ve got no business being there.

As always, comments are welcome.

Our children are not born to fulfill our lives, or to make right the things that have gone wrong for us. They make their own choices and create their own futures.

This is as it should be.

Parents who fail to grasp that rather obvious point can sometimes do a lot of damage to the young lives they are shaping. For example, I can think of a guy I used to know who lived in emotional pain and had self-destructive behaviors because of his father’s disapproval. (The father’s plan had been for him to attend The Citadel, which he chose not to do.)

I’m wondering, now that final tweaking and wordsmithing of WATB is over, how long it will be before some reader sees the book in those terms. In reading other people’s books, I can be very critical if it appears that an author has neglected to think matters through (just see the one-star reviews I’ve posted on Goodreads). So now the doubts are taking root: Have I adequately justified the campaign to help Joseph? When will readers begin complaining that his mother and I sought to make him into something he was not–and worse, that as a frustrated student of medicine, I was using his untreated condition as an excuse to play doctor?

This is one of the questions specifically tackled over on the FAQs page, and in the book’s epilogue if nowhere else, but the basic facts of the story ought to be sufficient, seems to me. When he was little, Joseph was in great distress on a continuing basis. I don’t think there’s a parent alive who’d be content to leave a kid in the shape he was then. When he finally attained peace within himself, and then, with help, when he slowly began acquiring skills such as the ability to walk, no one we knew at the time suggested that this might somehow be a bad thing. It was pretty evident that he thought the changes were good!

But experience shows that the debate is inevitable. The only unknown is how soon it will be raised, and whether this story can drive it to a new and potentially more constructive plane.

Unfortunately, life with Joseph continues to provide illustrations of why disability is in the interests of no one, least of all the child. This month, Joseph will have a dental appointment. He hates going to the dentist. Yeah, I know, nobody thinks it’s fun to sit in that chair. But Joseph fights it! He fights it with everything he has, and believe me the guy is pretty strong. When he was smaller, I tried to hold him down while the dentist pried his mouth open and dealt with the risk of being bitten. In recent years, they’ve had to bring in an anesthesiologist to fully sedate him. That means he cannot eat for eight hours prior to the event, and he’s an hour or two recovering afterwards. Oh, and it means an extra outlay of about a thousand bucks. Just for routine cleaning and x-rays. Consequently, he doesn’t get dental care as often as the rest of us do, and there are predictable consequences of that.

Dental visits are just one example of why I hate disability. Yes, it’s a continuing burden for me, but that is trivial next to the suffering imposed on my son. I don’t want my son to suffer. When somebody tells me that I’m wrong in seeking to impose something unnatural on him, what I hear does not sound well-meaning. If the question comes up during a reading or an interview, I hope to be able to discuss the matter calmly, in a way that can be understood by the other side. This post is a practice run at that. Feedback is welcome.