Seebach: A cautious message of hope for parents of autistic kids

Published July 29, 2006 at midnight

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After I wrote a column about autism spectrum disorders in May, many people wrote to share their own and their families' tales of hope and despair.

Among those who wrote with a cautious message of hope was Stephen Gut- stein, a clinical psychologist who has taught at Baylor College of Medicine and the University of Texas Medical School. Over the past several years he has been pioneering an approach to autism and related conditions that focuses on showing parents how to rebuild, or at least strengthen, the emotional connections with their children that have been stretched beyond breaking. He calls it "relationship development intervention" (his Web site is rdiconnect.com).

Gutstein and members of his staff are in Denver this weekend for a workshop, so we met over coffee Friday to talk about what he does.

The research literature on autism (he's paraphrasing a large body of research, you understand, and I'm paraphrasing him) indicates that people with autism spectrum disorders have difficulty dealing with the vast unpredictability of everyday life, coping with novel or ambiguous situations, coming up with multiple hypotheses and then choosing one. That can happen for many reasons, certainly not excluding medical ones, but it often plays out in the same way. A child who can't cope may become fearful, unwilling even to interact with his or her parents because it might lead to something threatening. The child's withdrawal in turn deprives the parents of the feedback that would help them provide their child just the right balance between reliable and comforting support on the one hand and challenge and stimulation on the other.

In contrast, though, the behavioral therapies in wide use tend to teach children static skills, make them less flexible, less capable of functioning in a dynamic environment, and ultimately less able to function as independent adults. Not all can do that; many have other impairments as well. But that's no reason for giving up on all of them. It's a myth, Gutstein says, that most autistics are mentally retarded.

His approach relies on identifying the small steps that children take as they develop and showing parents how to model and reinforce them in controlled settings and then in everyday life in ways that help children gain confidence in their own abilities.

These steps might seem elementary - learning to look to a trusted person for social reinforcement in a new or scary situation, say - but if your child has never taken them, they loom as high as the blocks of the pyramids.

I'm in no position to endorse an entire program, and besides it's in its early days yet. Gutstein began working with a few families about 10 years ago. His organization certified its first RDI consultants in 2001. There are some 90 certified consultants now, with about 250 in training. To grow, he'll need more people trained to do certification.

But the early results have been promising, and he knows what needs to be done to demonstrate effectiveness. One small research study has been accepted for publication, and another is under review. In the meantime, he has published individual case studies, for example in My Baby Can Dance, which is not the same thing as statistical data, but worth a look for families trying to decide on a course of treatment.

A couple of additional items are worth passing along. One reader cited studies by S. Jill James and others on the possible role of glutathione metabolism, which could affect children's ability to clear heavy metals, including mercury from vaccines, from their bodies. The reader did not cite specific articles, but one titled "Thimerosal neurotoxicity is associated with glutathione depletion: protection with glutathione precursors" appeared in the peer-reviewed journal NeuroToxicity in 2005. While vaccines containing Thimerosal, a preservative containing mercury, are obviously not the only factor in autism, and may not even be a significant one, it is certainly possible that dosages safe for almost all children might be dangerous for a small fraction of the population.

Another reader sent a link to an article in the Spring 2006 issue of the Journal of American Physicians and Surgeons (www.jpands.org/vol11no1/geier.pdf). The article, by David Geier and Mark Geier, "Early Downward Trends in Neurodevelopmental Disorders Following Removal of Thimerosal-Containing Vaccines," shows a reversal in the trend lines for new diagnoses roughly coinciding with the date at which Thimerosal began to disappear from pediatric vaccines, though it remains in some others, including flu vaccines.

The authors cite the NeuroToxicity study, as well as another by A.S. Holmes and others from the International Journal of Toxicology in 2003 that "examined first baby haircuts and determined that autistics had significantly higher body burdens of mercury in comparison to nonautistic matched controls, by demonstrating that the mercury level in hair, and thus the ability to excrete mercury, was inversely proportional to the severity of autism and overall much lower in the autistic group."

Just thought you'd like to know.

Linda Seebach is an editorial writer for the News. She can be reached by telephone at (303) 892-2519 or by e-mail at seebach@RockyMountainNews.com.

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