Politics and parenthood

Q: My grandson has been diagnosed with pervasive developmental disorder. What is this and what's the latest treatment/research?

Pervasive Developmental Disorder, or PDD, is usually shorthand for a condition technically known as Pervasive Developmental Disorder Not Otherwise Specified, known as PDD NOS. According to Dr. Fred Volkmar, a child psychiatrist at the Yale Child Study Center Developmental Disabilities Clinic, pervasive developmental disorders refer to a group of conditions marked by significant problems with social interaction and communication.

The best-known condition within the broad category is autism. However, if a child has some but not all of the criteria for autism or some of the other specific PDDs, he or she may be given the PDD NOS diagnosis (again, commonly referred to as simply PDD).

Some parents and caregivers disagree with the PDD NOS diagnosis because they believe it's vague and simply means doctors don’t really know what’s the matter with a particular child. The truth is that a PDD diagnosis should be heartening because it indicates your grandson may be more functional than a child with autism or other specific disorder and perhaps require less intervention.

More and more is being learned about PDDs in general, but a lot is still unknown, admits Volkmar. What researchers do know is that PDD NOS is relatively rare (it strikes about one in several hundred children, says Volkmar). The etiology of PDD NOS isn’t completely understood, but it’s thought to be a neurobiological condition children are born with.

The earlier the diagnosis is made and intervention begins, the more likely the child will succeed. Sometimes children with PDD NOS are put on medications to help their symptoms but more typically “treatment” involves behavioral and educational programs.

Much is required of parents and caregivers of children with PDD NOS. For starters, you must become an expert on the condition. You have to educate yourself about PDD NOS and the reputable interventions available. Unfortunately, many programs and therapies for PDD NOS make claims that can’t be substantiated and aren’t grounded in fact.

“I encourage parents to pay real attention to what a program’s claims are, look for scientific evidence, and be aware of good objective sources of information,” says Volkmar.

One of the best sources of information to date on programs for children with PDD NOS is a book published by the National Resource Council called “Educating Children with Autism.” You can also find links to solid information and support groups by going to Yale’s Developmental Disabilities Clinic Web site at www.autism.fm.

Victoria Clayton is a freelance writer based in California and co-author of the forthcoming book "Fearless Pregnancy," due out in November from Fair Winds Press.

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