If that title sounds like a bold promise to be making, please withhold judgment and stay with me for a moment. See what you think of the following, and let me know.

At the time most of the words in WATB were flowing out of my fingertips, the writing was an emotional outlet. But once it had been released, that pressure didn’t require me to spend further time burnishing the writing or putting my family’s life on display. And surely there are easier ways to become a published author, if that was my motivation. There was another reason, which came to me about ten years ago. A lot of people are in need of direction and perspective, and a lot of kids are counting on them to find it.

In hopes of sharing what I knew, I first launched an informational website. WATB is another offering.

By the way, I’m talking to myself here, too. Anything I suggest that sounds like an insight is one I’m still arriving at. Putting the right words together to define the situation is as much a benefit for me, still, as for anyone. That’s why I encourage dialog.

Of course, thanks to the Net, nobody today needs to spend any time being as lost and clueless as my little household remained throughout 1985 and most of 1986, and arguably far beyond that date. In those days, what we knew to be true came from very few sources:

• What we could see (i.e., that our baby was in distress)
• What we believed (that finding a way to help him was our responsibility)
• What the various doctors we consulted told us (first, don’t worry; be patient; and later, don’t blame yourself; and finally, don’t let this thing wreck your life)
• What alternative providers subsequently told us (that a little personal sacrifice on our part could make things much better)

At least some of the above points had to be wrong, or at best incomplete.

The story I tell was a matter of sorting through them
Den ganzen Beitrag lesen…

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.