OK, so let's say there’s a medical problem, or at least a suspicion that something might not be entirely right.

We all know what’s supposed to happen next. We go to the doctor. We explain the situation from our perspective. The doctor performs an evaluation and we leave with a game plan: a prescription, a referral to a specialist, or at least the assurance that our concern has received due professional consideration. Of course, if it turns out that we were just worrying overtime, that’s good to know, too!

This is not necessarily the way things go when a parent has doubts about a small child’s development.

Earlier this year, I read that a researcher in my city named Karen Pierce had completed a trial program in which more than 10,000 one-year-olds were given a simple 5-minute screening to catch warning signs of autism and other developmental issues. The children’s progress was then followed. Of those identified as potentially having a problem, 75% received a diagnosis by age three.

Dr. Pierce published her results, because she thought it would be important to know, at the earliest possible point, when a child’s development is at risk.

She said the the screening could easily be adopted by any pediatric office, and the point of the study was to encourage more doctors to use it.

I felt discouraged when I read this, because the screening she described ought to be standard practice. It's pretty well established by now that children with developmental issues have better outcomes when appropriate help is given early. Anyone in doubt can run a Google search for “early intervention” to see what is being said. Help begun at age one is likely to be more effective than help begun at age three. So while it's hard to disagree with the good doctor's observations, I do object to the glacially slow pace of progress in this direction. 

Twenty-five years ago, when my son was one year old, I specifically asked for such a screening, and for intervention, and was refused. Anyone could see that my son was missing major developmental milestones, although the underlying cause remained a mystery. In those days, the protocol for treating such a child amounted to little more than waiting and hoping that he might suddenly start catching up on his own. I knew nothing about the subject, but felt sure that passively waiting would be a mistake.

In the absence of any help from mainstream doctors, my wife and I attempted to educate ourselves and sought help elsewhere. Our son began making good progress as a result. Of course, he might have done better if his doctors had shown a little intellectual curiosity and had extended themselves on his behalf.

Recently, when I spoke about this to a group of fathers, a physician in the audience explained that one reason doctors are reluctant to acknowledge developmental problems in very small children is that “then they would have to do something!”

Now, I’m quite sure any doctor does want to help a patient if a way to do so is apparent. However, in cases of developmental delay, many doctors are not aware of an effective treatment. The fact is that various treatments have indeed helped some children, but those treatments may be considered experimental or controversial. Doctors are unlikely to endanger their reputations by steering families toward anything they think might be questionable. Thus, when my son was small, a pediatrician would say only, “There are programs out there for children like yours, but I’m not going to talk about them.” When asked how she expected us to make decisions, she suggested getting our information from other parents.

Another obstacle to obtaining a timely diagnosis is the doctor’s awareness of a waiting list for getting into an early intervention program. At least, this was the rationale given in a recent article by a Canadian pediatrician. I fail to see the logic in that reasoning. If there’s a waiting list, families should get on it now rather than later.

Perhaps the Canadian doctor feared that parents would be subjected to needless anxiety if the passage of time later revealed that their child’s early screening had resulted in a false positive, and that no special intervention was needed after all. On the other hand, if a child is not progressing at the same rate as his peers, the parents usually notice the warning signs first. In my family’s case, we most definitely noticed. Denying the parents’ legitimate concerns and kicking the can down the road does not spare them any anxiety. By far, the best remedy for anxiety is the knowledge that competent people are addressing its cause.

For my family, professional neglect had the effect of alienating us from doctors and driving us to alternative medicine. And while we did find value from some alternative providers, the loss of faith in mainstream doctors was not in our child’s best interests. It could have been avoided.

It's true that children do not all progress at the same rate, and that, for example, parents need not be alarmed if their baby is not crawling at eight months of age. The purpose of this article is not to frighten parents or to create friction between them and their children's doctors. On the other hand, the information exchanged at the pediatrician's office needs to flow in both directions. The parents need to share everything they have observed about their child, and the doctor needs to be completely honest in evaluating both the child's condition and the doctor's own capacity for providing support. If a doctor cannot do that, the parents might just need to shop around for another provider.